Soylent Green Lyme Blog

Fall 2011 Update

2011-09-22T09:21:00.000-07:00

My daughter has been doing great. She continues to be symptom-free, although continues to struggle with flares. Since the spring, her flares seem to be more immune-related rather than pathogenic load-related. Clearly the diseases are still present, as indicated by blood work, and by her immune responses. Her immune system is so dysfunctional.

Seasonal allergies, a food she commonly eats, and very loud noises can trigger a flare. Flares last about 3 to 5 hours. An exposure to tulips will bring on a flare of her traditional Lyme symptoms (headache, fatigue, shin pain, stomach ache). Homeopathy continues to help her with these symptoms, curing her flares about 80% of the time. I learned if a flare is triggered by an environmental allergy like tulips, a homeopathic remedy for allergies such as Wyethia will help rather than a remedy I commonly use for Lyme. So, her symtpoms will call for Wyethia, Sabadilla, but will work! Others that work are the Strep and Carcinocin nosodes at very high potencies. Very interesting, and happy I finally figured it out.

We are on a new BioSET protocol right now that seems to be really helping re-train those memory cells not to react. I have the vials at home that our practioner made us (she is an angel!), and I clear her multiple times a day. I have a ways to go, but can already see a difference, so I am hopeful. If it were not for BioSET, she would not be able to eat anything or take her antibiotics or supplements!

Although this blog is mainly for my own reference and log keeping, I do plan on updating it with our treatment timeline for this year. Just hasn't been a priority!

In health and hope, Ashley

December Relapse

2011-01-28T10:11:00.000-08:00

What has your doctor's approach been for those kind? My docs have always put the treatment focus on the Lyme/co-infections since they are the ring masters that allow those bugs to take over. Dr. Marra says "You don't want to be a bug chaser." Makes sense but frickin scary when these things pop up like that.

My daughter had a Bartonella relapse in December (triggered by our long flight back east for thanksgiving). Guess the low oxygen and pressure change wasn't a good idea along with winter bugs. It was mild in comparison, especially when I look back to the last 2 Decembers. We actually went to a matinee every day, and grocery store. Was good to get out of the house each day.

The doc says the relapse is part of the disease process, but it sucked and I got super depressed about it and felt trapped. I think I was in denial that she would have a setback. It is normal for the bugs to take turns being "center stage", and each time to be milder and milder until remission holds.

We are in year 3 and on track (in theory anyway). She is back to her normal self, no symptoms! And sure enough all the opportunistic bugs are now not a stressor for her. Phew! We are now focusing on her immune system and her allergic reactions to things. I found a BioSET practitioner to go through our clearings again which has gotten her back to eating normally etc.

My son continues to be symptom free and doing well in middle school. Most importantly he is happy and confident. Making all A's except one B in science (the bane of his existence!). He is playing baseball and belongs to a good group of peers (well, except one I could do without).

They both continue on abx, biofilm protocol, and supplements, and good food and exercise.

I have been reading a micro immunology book and it has been so helpful in understanding all of this. It is making me think and ask questions. Hopefully by the time they are adults we will have all this figured out!

Antibiotics Summary

2010-12-05T13:47:00.001-08:00

Amoxicillin 10/6/08: jr. LLMD
Cefdinir/Nystatin/Zithro: 12/15 first real LLMD
Cefdinir inc/Nystatin/Zithro/Rifampin: 1/22 first LLMD's p.a.
Mepron, Zithro, Nystatin: 2/24 pedLLMD
Mepron, Zithro, Nystatin: 3/19/09 pedLLMD (phone)
Mepron, Zithro, Nystatin, Plaquenil: pedLLMD 4/6/09 (phone)
Mepron, Zithro, Nystatin, Plaquenil, Septra: (5/13/09) LLMD
Cefdinir, Rifampin, Nystatin,Probenicid, Plaquenil (10/19/09)
break from abx for 3 weeks due to swine flu (11/4 - 11/25/10)
Plaquenil, Rifampin, Azithromycin, Nystatin (12/9/10)
Add Septra as a 7 to 10 day trial. Stopped after a few days. Horrible flare. (2/12/10)
Biaxin, Alinia, Bactrim (6/29/10)
Biaxin, Alinia, Plaquenil (8/3/10)
Biaxin, Alinia, Albenza, Diflucan (9/20/10)
Bactrim, Alinia, Zithro, Diflucan (11/8/10)
Zithro only due to Bart. flare from thanksgiving flgt (12/13)
Zithro, added back Bactrim at half dose 12/16)

Favorite Detox Brands

2010-11-17T10:19:00.000-08:00

I just put this list together for a friend, then figured I should post it. Below are my favorite detox products that I have found to be the best for reactive/sensitive people. A shout out to Mary Coyle for her guidance and introduction to this incredible way to detox children.

1) HVS Labs (homeopathic only) Adaptosode, Biosode, and Detoxosode we found were the best for our kids (not so reactive). These products are designed for overall organs and systems cleansing.

2) Energetix: Pure Body Clear (herbs) Capsule form only. Through practitioners

3) Flor-Essence (herbs). Available in a tincture to make tea or capsules. You can buy this at Whole Foods, or some health food stores or online. This is a popular herbal blend for cancer patients to use before or after chemo.

I would recommend taking any of these with homeopathic drainers (no herbs, good for allergic/reactive people):

Pekana: Renelix (kidney), Itires (lymph), and Apo-Hepat (liver).
Energetix (Drainage Tone, Liver Tone, and Kidney Tone)

The homeopathic stuff doesn't interfere with anything on the biological level - so abx and other supps won't be affected. Herbs, there may be some contraindications.

November Doc Appt

2010-11-09T12:22:00.000-08:00

So it looks like it's Bartonella's turn to take center stage, with Biofilm as back up singer. Romy continues to be pain free and fatigue free, but did have a week-long flare. Good news since we did pulsing this time and we had a very different protocol. The flare was thankfully not like the old days, she only missed one day of school and was basically comfortable. She has tendon discomfort on her right foot that happened after a soccer fall. That is her only complaint this flare week, but has occasional fatigue and some minor neuro sx and circulation problems based upon her physical exam. Our LLMD changed up her regiment again to reflect who is showing their face today.

As usual, I feel a bit down and overwhelmed after these appointments. On the surface, she is doing great and has come so far, living pain-free, fatigue-free, and dancing and playing soccer to her heart's content. But, she continues to be a sick person and I continue to be her caregiver. I get burnt out from hypervigilance. The doc assures me this is how things go, we keep rotating through regiments that address the highlighted microbe as the population gets lower and lower to eventually going dormant. I am thankful I have a great doc that can see these remaining symptoms of infection and knows where my daughter is on her road to wellness.

I know I should just be happy with how things are going, but I am tired.

Here is her current regiment:

Biofilm Protocol
Boluoke
Nattokinase
Serrapeptase
BiofilmX

Antimicrobials
Zithro, Bactrim, and Alinia to cover all 3 bugs
A-Bart
Diflucan for yeast and Lyme

Nutritionals
probiotics
saccroB
Vit D
Vit C
Multimmune
Baxyl
Multivitamin

Pain Free and Fatigue Free!

2010-10-21T11:07:00.000-07:00

Since June 11th, my daughter has been pain free. She flares, but no longer suffers from the chronic pain she has endured over the last 1 1/2 years. They are minor and last no longer than a few hours. She can sometimes still go to school. I will never forget her face when she came down for breakfast that morning to tell me that her headache (the last symptoms) was gone. I forced myself to not get excited until I knew it had lasted a few days. Hurray!!!!!!!!

It's incredible how everyone is so different. Over the last 2 years her symptoms gradually increased until diagnosis, continued to gradually gain momentum, peaked to where I thought we would lose her, then gradually decreased over time to where we are today. There haven't been radical ups and downs. Just where ever we are.

Dr. J. gave me a general timeline of 3 years for kids and 4 years for adults in intensive Lyme treatment to go into recovery, remission, whatever you'd like to call it. We are now in year 2 and am happy to say we seem to be on target. My now 9 year old has residual symptoms that indicate there is still a pathogenic load, although it is very low. Her symptoms are occasional sweaty hands, hyperflexion, and red bumps on the back of her tongue and enlarged tonsils. She sometimes gets more "emotional" cyclically and on certain pulsing meds.

We continue with an integrative approach that has worked for us - antibiotics, and herbs and homeopathy as support, along with nutritional supplements, diet, and exercise. Luckily, she is carefully examined physically each month by her LLMD and her regiment is tinkered with. We drive 4 hrs each way and stay overnight at a friend's each time.

She plays soccer which has greatly helped her increase her endurance and agility. Until this summer she couldn't walk let alone run longer than a few minutes without causing shin and heel pain. Although she was dead last during a field day running event, she was able to run! Slowly but surely she is getting closer to being age appropriate - she is almost there. Younger neighbor kids keep her motivated during nightly games of tag. She hopes to be faster than them.

She also takes 4 dance classes a week - is motivated to make the dance team next spring. She tried out this spring (I didn't tell them about her illness) but didn't make it. Although we were really upset (a great social bonding thing) it gives her more time to get stronger.

Interestingly her flares have been of late attributed to food. Food she's eaten her entire life - eggs, beans, dairy, and soy. It took me a couple months to figure it out - thinking it was die-off as usual, the culprit for symptoms. But the usual homeopathics (Ars. Rhus. Tox, Bryonia, Gelsemium, Cocc., Nat. M., Puls.) that work to bring her out of a flare based on the symptoms no longer worked.

Then I realized it happened around food, but not always. I thought the glycemic issue was returning but that ended up not being it. Next I looked at her supplements, carefully dosing her one thing at a time to see if there was now a reaction. I was cautious with new stuff which happened every month. Nothing. I then turned to food and finally figured it out! She is bummed but now she tolerates sugar which used to give her an allergic reaction.

It's been weeks since she's had a flare now that we've removed these foods. She must have Leaky Gut Syndrome as a consequence to the antibiotics and the rest of her regiment and the bugs. Thanks to my BFF Georgeann it become crystal clear! But hey, I'll gladly take that along with a healthier child not screaming in pain. So now we are ramping up the Aloe and other gut-building stuff. I am confident we can rebuild her (like Neo from the Matrix)

Today we are pulsing with Diflucan (yeast) - she does get clammier hands and has more stools and flatulence on this. We are also pulsing with Alinia for parasites and Babesia, Albenza, and Biaxin. We are doing a biofilm protocol (Bulouke) along with some other herbs and the usual nutritionals:

Prescript Pro
Vit D
Pe Min Kwan
Bolouke
Vit C
Biocidin
IgG 2000
Multiimmune
Baxyl
BSP201
Multivitamin
Chlorella

GF, sugar-free, organic whole foods as much as possible. Lots of mexican and asian food. GF sandwiches with potato/corn chips, GF granola bars, fruit and veggies for school lunch. Fruit smoothie with protein powder for breakfasts. Handful of pistaccios, cashews, walnuts, and almonds for snacks and vegetarian meals.

We see our doc again in 3 weeks and we'll see where we are.

Although I know she can regress I am happy to be in the place we are today. Each day that she makes it the whole day at school and is happy before bed I am beyond grateful.

We are happy to be living in the beautiful North West. We miss our friends and the life we left behind, but know this is a better place for all of us. I am confident my children will continue to make gains and make a life here. I continue to feel lonely and isolated - the consequences of managing multiple chronic infections in GI/Immune compromised children but hey, I am happy I can do it without having to work. This is my path and I strive to accept that and feel satisfied my life is to help my children and others. And maybe catch a movie here and there! haha

Year 2 - 9 years old

2010-10-20T12:03:00.000-07:00

10/17
morning flare: burning feet, head, throat, stomach, fatigue, mental sx. Lachesis worked to bring her out of flare. Later, both thighs itchy as side effect from lachesis. Lots of head nodding tic.

10/18
left leg itchy, head nodding worse, up to 8x repetitions at once. mental sx

10/19
Began new LLMD protocol: Cefdinir alone at adult dosage for 2x days as a ramp up.
Cefdinir, Rifampin, Probenicid, Plaquenol, along with nystatin and cowden at reduced drops.

right arm sore at blood test site. kept bothering her, hasn’t happened before.
After lunch: head, throat, right heel (just at recess), 100 degree fever. Viruchord, mycelia, drainage helped. mental sx

10/20
morning stomach. Ars. worked
night: “fuzzy” and sore left calf, left butt cheek, bad stomach, left heel
mental sx

10/21
MORNING FLARE
frog throat, mucous, sore throat (not Lyme type), sensitive skin, both calves, eyes hot & watery, stomach (not Lyme type), all over headache (not Lyme type).

10/25
NIGHT FLARE: shins, both arms, head, stomach, entire back, fatigue, sensitive skin

10/26
MORNING FLARE: headache, sensitive skin, stomach, shins esp. right shin that is pounding, sore and tickly throat, arms.
Pars/Burb, baking soda/seltzer - didn’t work. Cocc a little.

10/27
NIGHT FLARE: 2 hrs but better B4 bed.

10/29
NIGHT FLARE: after crying hysterically about homework. “Rock” in throat, sore throat. Lasted 10 minutes. Left hand itchy

10/30
NIGHT FLARE: was resting for an hour before right jaw, stomach, chest, fatigue, humming tic STARTS.

10/31
HALLOWEEN NITE. full nite, bed late, did great on hills and endurance in general. Shins lasted until about 9:30pm. Cocc. helped. 11 days after new medicine.

11/1
humming tic, very emotional, flare by eating dinner, lunch. Empty stomach makes it worse? not sure.

11/2
ONE NORMAL DAY. very hungry, 2 bananas B4 bed.

11/3 BEGAN CROUPY ACUTE (missed a week of school)
MORNING FLARE: everything
aconite, burbur, nothing helps. mushy BM and lots of it. Die-off flare?

11/3 SUMMARY OF CONCERNS FOR LLMD, PHONE MESSAGE
10/19 since new abx protocol, 15 days.
flares assoc with BMS, doesn’t relieve
9 out of 15 days are flare days which are either morning or nite, not all day. BMs more loose than usual during flare.
humming tic since 10/30
flare sx: chest pain, right eye blurry for about 10 minutes
increased appetite during flare. really really hungry and not just carbs

11/4 acute begins
croup sx along with NEW TICS “squeaky” vocalizing and “hard to breathe” sound, sniffing, and throat clearing. croupy cough absent.
Dr. H. office returned call to recommend taking break from regiment for 3 weeks
Hepar and Spongia helped but temporary

11/6
local LLMD
phlem in lower airways, regular temp. O2 fine.
*prescribed cough formula and nebulizer (garlic, and alb as necessary).

11/7 - 11/11
stable but still with cough. Spongia and herbal cough formula worked a little, but not all the way. Tried Drosera for fun, thinking pertussis but didn’t help.

11/12
MORNING FLARE plus usual cough/chest sx.

11/13
back to “regular” symptoms all day except CALVES hurt

11/14 - 11/15 Sat/Sun
Burt on duty. Continued nebulizer with garlic and albuterol as needed. Considering the Zithro prescription as we wait to see if she gets better.

11/16
Began zithro for acute resp infection.
day 1 on acute antibiotic

11/17
LLMD responded to my message about zithro. Said not to take with Rifampin which was fine since Romy was off her abx for now already.
day 2

11/18
SMALL FLARE, headache in afternoon. Cocc. helped. Breathing seems to be much better, just heard the “hard to breathe” sound slightly before bed.
day3

11/19
SMALL MORNING FLARE - shins, shoulders. better after breakfast.
day 4

11/20 Friday - thru thanksgiving weekend 11/29
day 5 - last day of zithro for acute
stable for 9 days. Very few minor flares here and there. Handled staying up late a couple nights well.

11/25 Wednesday
Returned to Lyme antibiotic protocol

11/30
AFTERNOON FLARE: fatigue, new throat tic worse. pain rotating between calves and back of thighs hurting. Very emotional, lots of crying. Pulsatilla helped.
Dr. Means appt: small amount of fluid left in left lung. Continue with cough formula and check in 5 days.

12/2
Zyto scan with Dr. T
-aggression, emotional blockage
-borrelia lysate IgM
-staph enterotoxin
-allergic to meat and dust
ordered sprays, will give it a shot.
AFTERNOON FLARE: fatigue

12/3 Thurs to 12/7 Mon.
stable, with “regular” pain and other symptoms. Continues to flare around meals and before/after BMs. Minor flares here and there, often before bed she’ll need a homeopathic remedy for a headache or restless leg/shin pain.

10/16 to 12/9 SUMMARY FOR LLMD

Flare days : 5 days home from school with acute. 2 other days home. 17 days where there was pain here and there that didn’t last long since last phone consult (10/16). Numerous small flares before/after meals and BMs.

Number of symptoms improved: unchanged
Number of returning symptoms: unchanged
NEW SYMPTOMS: new tics leftover from croup: Throat clearing, sniffing, “squeaky” vocalizing, “hard to breathe” tic. Hand shaking tic started slowly, first as an attempt to crack her elbows.

Antibiotic Protocol
(from 10/19 to 11/3. 15 days. Taken off during acute (flu/croup). Resumed 11/25 to present. 14 days so far). Dr. Jennifer Means, N.D. managed acute (ILADs, LIA)
Plaquenil
Cefdinir adult dosage
Probenicid
Rifampin
Nystatin

Modified Cowden
Samento/imprinted
Cumanda/imprinted
with Parsley, totalling 4x a day

Current Horowitz Supplements
Methylprotect, Reservatrin, Chelex, NAC, Alamax

Vitamins
B, Mag, Omegas, Minerals, D3, Homeopathic Drainers/Toners

9 CHRONIC SYMPTOMS for December’09 (same since October)
frontal headache
arm soreness
stomach pain
chest pain
shin pain
mental sx: sensitive, irritable, emotional
fatigue
head nodding tic and other facial tics
NEW TICS: throat vocalizing, breathing tic, sniffing and throat clearing
Occasional“stone” sensation in throat or stomach, heels, shoulders, elbows, hips, butt, thighs, calves, back, SI problems
12/9 MEDICATION CHANGE

Antibiotics
Plaquenil
Rifampin
Add: Azithromycin 250mg a day
Nystatin 500mg 1x/2x a day
Stopped: Cefdinir, Probenicid

Cowden Protocol
Stopped: Samento/imprinted, Cumanda/imprinted with Parsley, 4xday

Current Horowitz Supplements
Methylprotect, Reservatrin, NAC, Alamax
Stopped: Chelex

12/9 Started Dr. T Protocol

12/10
very negative, emotional

12/11 Friday
very negative and emotional
Night FLARE: headache, tired, cold (is it from sprays?)
Arms worse on occasion rather than shins. Drinking gobs of water!

12/12 - 12/14
mood better, fatigue after meals. Seems more restless in sleeping and more sweaty in general, especially at night. Arms worse on occasion rather than shins. Flary with headache at nites. Lots of water! Hand shaking continues.

12/16
BEGAN FULL COWDEN PROTOCOL, the Condensed. Started with 4 drops which was the dosage before on the modified. Kept the support drops at 10 but increased Banderol and Samento 1x drop per day on average, peaking at 21x drops. Flared on day 22 (1/6/10), so decreased to 17 which seemed to work.

BEGINNING YEAR 2 OF ROMY’S ILLNESS

1/2/10
BIG NEWS chronic “regular” Lyme headache is almost all the way gone!

1/4/10
Dr. T Reading #2
Radiation 1877 big time, a good guide for metals, molds
ANS
phages are fighting off something (used to fight infection)
antimony (often related to mold)
cats, animals, insects - allergic
stachy - better but still there
gall bladder - an issue
hormonal stuff again; regulation to treat through pituitary. plastics, herbicide atrazines, body acting on hormones, chemical toxin. liver support will help
not yet on wifi blocking paint
strep okay

1/6 flare day in afternoon. top of left foot, headache, before bed

1/7 flare day in afternoon. right ankle, stomach before bed.
BEGAN DR. T READING #2 sprays

ROMY ROSEN SUMMARY FOR HOROWITZ, 1/12/10

Flare days : Zero days where she stayed home all day. Small flares before/after meals and BMs, and before bed were minimal. 3 flare afternoons resulting from too high dosage of Banderol and Samento.

Number of symptoms improved: 4 - chronic “regular” headache almost gone, emotions much more stable, fatigue better, new tics gone, older ones better, and flares less numerous

Number of returning symptoms: unchanged

NEW SYMPTOMS: NONE/GONE. The new tics we had last month are now gone. They were tics leftover from croup/flu: Throat clearing, sniffing, “squeaky” vocalizing, “hard to breathe” tic. Hand shaking tic started slowly, first as an attempt to crack her elbows.

Antibiotics
Rifampin, Azthromycin, Plaquenol, Nystatin

CONDENSED COWDEN PROTOCOL (st date 12/16) Started with 4 drops which was the dos,age before on the modified. Kept the support drops at 10 but increased Banderol and Samento 1x drop per day on average, peaking at 21x drops. Flared on day 22 (1/6/10), so decreased to 17 which seemed to work.

Vitamins
B, Mag, Omegas, Minerals, D3, Homeopathic Drainers/Toners

Probiotics on rotation: VSL3, Theralac, UltraFlora

9 CHRONIC SYMPTOMS since October’08
frontal headache (improved, almost gone since 1/2/10)
arm soreness
stomach pain
shin pain
mental sx: sensitive, irritable, emotional (improved)
fatigue (improved)
head nodding tic and other facial tics (almost gone)
hand shaking tic and foot dragging tic (improved)

Occasional “stone” sensation in throat

1/12
mild morning flare - stomach/headache/shin. Ars. worked

1/13
headache/shins, throat clearing tic, sniffing tic

1/14
confirmed breast bud.

1/15
mild morning flare - sore throat, okay by school

1/20
Dr. T scan #3
interleukin - allergy
TH3 immune sys off
wheat, pepper, potato, melon, peanuts
needs pancreatic, pepsin, minerals
phosphatase, problem area
liver/gall bladder stress

Sun 1/24
a couple head nodding

Mon 1/25
a few hand shaking, throat clearing, sniffing, and “hard to breathe” tics B4 bed.

Tues 1/26, Wed 1/27
tics B4 bed - throat clearing, sniffing, fatique, tiny flare. popping mouth tic.

1/28
hand shaking - very subtle

1/29 (possible acute)
flare after dinner, rock in throat, headache, legs. wheat from Karam? 4 wk cycle, more leaky gut? Cocc. didn’t help.

1/30 (possible acute)
still rock in throat, getting better, ars worked at nite.

1/31 Sun - (acute?)
croup in morning. fatigue. spongia. everything else almost normal. tic: hard to breathe, throat clearing, sniffing. Afternoon: fatigue, irritability, chest & throat worse

2/1 Mon - (definite acute)
morning: cold sx; mucous, chest congestion. throat, chest, fatique.
Eddie too.

2/2 Tues/Wed
multiple everything sx. cold sx. knees, calves, lower leg, feet, shoulders.

2/4 Thurs
cold sx gone but flare same. no remedies can crack it. Ars and Tub. helped temporarily in beginning with fatigue.

2/5 Fri
Acute - home all week. flare worsened since wed.
Symptoms: frontal headache, throat, tonsils swollen but not red, shoulders, chest, stomach, lower legs, allover feet, ankles.
LLMD

2/6 Sat
headache, flare seems almost over
2/7 Sun
flare over, although a small flare after Slappy Cakes breakfast for one hour. New tic: snort.
2/8 Mon
snort. tired and very cranky after school.
2/9 Tues
hot&cold temp changing all day until afternoon. fell apart emotionally in morning
Dr. T SCAN #4
kept on same sprays. allergies causing groups of people to feel sick.
2/10 Wed
woke up a.m. chronic arm pain completely gone. chronic headache almost gone. Must’ve been from the good work of the flare.
2/11 Thurs
fatigue
2/12 Fri

ROMY ROSEN SUMMARY FOR LLMD, 2/12/10

Flare days : One full week where she stayed home all day. Began as cold sx (congestion, cough) along with brother & neighbor kids, then became a flare 3 days later. Bartonella sx: 99 fever, sore soles, irritable/falling apart, stomach pain, shins. Add’l sx: throat, shoulders, chest, ankles, calves, and heels. Tics worsened gearing up a few days before flare. Small flares before/after meals and BMs improved except during the flare week.

Number of symptoms improved: Two days after flare 3 chronic sx improved or gone.

arm pain GONE completely.
headache improved
flares before and after meals and BMs improved.

Number of returning symptoms: unchanged

Tics: Improved except during flare week: Throat clearing, sniffing, “squeaky” vocalizing, “hard to breathe” tic. Hand shaking tic almost gone. Leg dragging tic gone.

New tic: snorting. Very minor and not constant. Began towards the end of the flare week.

Antibiotics
Rifampin, Azthromycin, Plaquenol, Nystatin

CONDENSED COWDEN PROTOCOL (st date 12/16) unchanged.
Vitamins
B, Mag, Omegas, Minerals, D3, Homeopathic Drainers/Toners

Probiotics on rotation: VSL3, Theralac, UltraFlora

CHRONIC SYMPTOMS since October’08
frontal headache (even more improved, almost gone)
arm soreness (gone)
stomach pain
shin pain
mental sx: sensitive, irritable, emotional (improved)
fatigue (improved)
Tics:
head nodding tic and other facial tics (almost gone)
hand shaking tic (improved)
leg dragging (gone)

Occasional “stone” sensation in throat (during flare week a few times)
2/12 Horowitz Update

Likes response, isn’t going to change current protocol much. Just make an addition of a drug that worked before, Septra. He said normal to flare after upper respiratory infections.

Keep everything the same except:
Add Septra as a 7 to 10 day trial. Will try that after the long weekend.
Add more probiotics - now do 3x a day
If stomach can handle trial we can move thru killing the Bartonella faster
add chromium. Medaglycemic is a good product for this. Said the fatigue assoc with meals and BMs is a vagus nerve stimulus response. A hypoglycemic, blood sugar issue.
change diet to smaller meals and more snacks.

2/17 Wed
Clear-eyed, great mood, less fatigue and tics

2/20 Sat
Played soccer for the first time ever. Did great, rested once because of shins. Rallied. DAY 1, had taken one Septra pill.

2/21 Sun
Swimming and running around, flare in the evening. Skipped Septra pill

2/22 Mon
Flare, home from school. head, shoulders, rock throat, mucous, stomach, shins, calves, fatigue.

2/23 Tues
morning flare. head, shoulders, throat, chest, stomach, shins, heels
Called Dr. H office. Hold Septra due to severity of flare.

2/24 Wed
Flare day. Right shoulder the worst. no chest but still head, throat, stomach, shins, heels

2/26 Fri
Vocal tics worse.

3/2 Tues Dr. T Zyto scan
Chlamydia -277, Epicoccum Purpupas(?), a mold -156
Plastics -116, Bacteria Kit
Parasympathetic, Pancreas
H1N2

ROMY ROSEN SUMMARY FOR LLMD, 3/12/10

Flare days : Other than the 4 day Septra flare, no major flares where she had to stay home. Just the usual small glycemic ones before/after meals, but less frequent. I think the chromium and better food intake management is helping those small flares.

Number of symptoms improved: 2 - fatigue and mental symptoms continue to improve. More energy during the day, we notice this after school and in the evenings. More positive mood, happiness in the mornings. Chipper, gets herself ready with no complains. More together.

Decided to take a risk and sign her up for soccer. Managed her pain through 2 practices so far with success. Coach is having her play goalie so there is less running which triggers her shins to flare. She only had to rest once or twice during each practice.

Number of returning symptoms: unchanged

Tics: stable. still see these when tired at end of the day but very minor. Throat clearing and sniffing, and occasional snorting.

Antibiotics
Rifampin, Azthromycin, Plaquenol, Nystatin

CONDENSED COWDEN PROTOCOL (st date 12/16) unchanged.
When we changed to Mora, began dosage at 4 drops and gradually increased since it was new. We are at 12 drops now. She is fine, no change.

Vitamins
B, Mag, Omegas, Minerals, D3, Homeopathic Drainers/Toners

Probiotics on rotation: VSL3, Theralac, UltraFlora

CHRONIC SYMPTOMS since October’08 - No Change
frontal headache
stomach pain
shin pain
mental sx: sensitive, irritable, emotional (improved)
fatigue (improved)
Tics:
vocal tics on occasion when tired (throat clearing, sniffing, and snorting)

3/13, 3/14
allergic symptoms. Homeopathy helped.

3/15
very bad tics (breathing tic, throat clearing, sniffing), but fixed with Allerchord. Worked on brother and father too.

3/16
Home with flare - mucousy cough, low fever, fatigue, clammy, shins, bad headache, sore throat. Better by 2pm.

3/17
Dress rehearsal. Morning flare. cough, slightly warm, chest tight, headache, shins, sniffing and throat clearing tic. Eyes red, face flushed. Went to school anyway. Not as painful as yesterday.

Spring Break Week
Amazing all week. Skied for first time - did not aggravate shins. Skiing blues by 3rd day (had lessons). No food/glycemic flares. Stiff neck 2 mornings (ski helmet?) 2 nites flare before bed, very minor. Arsenicum got rid of it.

4/2
Ciara’s birthday, Nicols, Bauers. Stayed up till 1130p. no sx

4/3
Minor flare, emotional and tired.

4/4
right elbow and upper arm flexors. Geometric stress from Nicol visit but also fell off bed onto arm. Top of arm red and itchy. No pain

4/5
Afternoon flare, right elbow, upper arm, left knee, stomach swords.

4/6
elbow almost better.

4/7
elbow all better. top of hands, arms itchy. Small headache

4/12
sore heels after running barefoot

4/13
chemical exposure day. tickly throat, itchy eye (Euph yes, Wyethia no). sore heels, felt dizzy after getting up from resting. Shins tiny bit better.
4/14
Homework observation. still needs to modify writing position by tilting head to left. This avoids “swords” in back of neck, sometimes forehead.

GENERAL COMMENT: hairbrushing much better.

4/15 - 4/18
allergies

4/19
headache, chest tight, sore throat, tickly throat, shins, fatigue

SUMMARY FOR LLMD, 4/20/10

Soccer is going well. Noticed she is taking on more aerobic activity with no consequence. Definitely affected by seasonal allergies - red itchy eyes, cough, chest tight, mucousy on flare days. Experienced some geometric stress from family visiting.

A pesticide Talstar (active ingredient is Bifenthrin, a Pyrethroid) was accidently sprayed around the perimeter of our house. Our neighbor’s house was supposed to be sprayed. That day she did get a tickly throat, itchy eye, sore heels, and felt dizzy briefly after getting up from resting. But, shins were slightly better that day. Not sure if it was associated with the exposure or not but worth noting.

Flare days : 4. Minor, although stayed home from school she improved by the afternoon in most cases. Homeopathics for relief are helping more these days.

Number of symptoms improved: 4 - fatigue and mental symptoms continue to improve. More energy during the day, we notice this after school and in the evenings. More positive mood, happiness in the mornings. Chipper, gets herself ready with no complains. More together. Shins have improved a tiny bit. Tics are stable and more minor and happen less often.

Number of returning symptoms: 1. Heel pain did return briefly, for an hr at a time, after lots of running on the pavement outside barefoot.

General comments: Homework observation. still needs to modify writing position by tilting head to left. This avoids “swords” in back of neck, sometimes forehead. Tolerates hairbrushing much better. Still needs to sit for major sessions or else she gets tingly pain in her head.

Antibiotics
Rifampin, Azthromycin, Plaquenol, Nystatin

CONDENSED COWDEN PROTOCOL (st date 12/16) unchanged.
12 drops of antimicrobial

CHRONIC SYMPTOMS since October’08 - No Change
frontal headache
stomach pain
shin pain
mental sx: sensitive, irritable, emotional (almost gone)
fatigue (improved)
Tics:
vocal tics on occasion when tired (throat clearing, sniffing, and snorting)

4/21
puffy eyes, sore throat, itchy eyes, mucous, sniffy tic. Allium 1M helped.

5/3
Birthday - 9 years old

5/4
headach after big piece of cake after school. Better before bed

5/5
stomach, shins. Arsenicum helped. Before bed throat clearing tic, minor. LOST CHRONIC stomach pain.

5/17
post SF trip to see Charla. Woke up with headache, stomach, all of right leg. Sore from pool and tennis court running around? And the cheerleading? More exercise so more sensitive?

ATTN: LLMD for today’s phone consult at 5:30pm.

FROM: Parent of Romy, 9 years old

DATE: 5/18/10

Seasonal allergies - chronic red, glazed, sometimes itchy eyes. Cough, sore and tickly throat, mucousy. Sometimes stomach and headache

Flare days : 2. Minor, didn’t miss school. Homeopathics worked for relief.

Number of symptoms improved: 4 - fatigue and mental symptoms almost normal. Tics barely present, just when super allergic. CHRONIC STOMACH PAIN GONE!

Number of returning symptoms: 0.

General comments: Homework sitting position still needing modification. Tilts head to left. This avoids “swords” in back of neck, sometimes forehead. Tolerates hairbrushing much better. Still needs to sit for major sessions or else she gets tingly pain in her head.

Antibiotics
Rifampin, Azthromycin, Plaquenol, Nystatin

CONDENSED COWDEN PROTOCOL (st date 12/16) unchanged.
12 drops of antimicrobial

CHRONIC SYMPTOMS since October’08 - stomach pain gone!
frontal headache
shin pain
mental sx: sensitive, irritable, emotional (almost gone)
fatigue (gone)
tics: barely present. Just sniffing triggered by the allergies.

LLMD PLAN; WBC completely normal! Take her off abx after ballet recital (end of June) and phone conf with him next after she’s been off them for 3 weeks. Will continue with Cowden and other supplements/diet for next year to 1 1/2 years. I am nervous to take her off with minor headache left. He assures me that patients that go off after 2 mos sx free still relapse.

5/18
B4 bed (late, 10pm) right ankle, neck, headache

5/20
B4 bed headache, right hip, itchy hand

5/23
Sunday, recital picture day. Susan’s party afterwards. FLARE: headache, stomach, fatigue, right ankle. Remedies: Ars (no), Aurum (no) Eup (no). Started after eating homeade calzone and birthday cake at party.

5/24
Monday - missed school, same flare sx

5/25
Music Man recital. Evening FLARE: bad headache. heavy, humid, rainy day. thunder
Bryonia 1M worked

5/26
morning: right ankle
Dr. Toby zyto scan: flare stimulated by virus. ancylostoma cevlanicum, lyme path, brucella, hsn2, Polarity off.
evening: right ankle, headache bad again. Bryonia worked again.

6/5 - 6/10
head nodding tic a few times per day. Also reports headache (the last chronic sx) takes breaks for about an hour.

6/6
Flare after eating rice cereal with soy milk. B4 bed SUPER hungry.

6/7
flare after morning breakfast again with same cereal, ended at school. Flared after GF pasta and meat sauce in evening. Fatigue, both ankles, shins, calves. Can’t remember if I kept up with the chromium. Glycemic stuff, autoimmune/allergy? Tried Allerchord, Euphrasia 200C seemed to help in a minor way. Probably not strong enough.

6/8
Shins minor from walking up hill during field trip.

6/11
Chronic headache completely GONE. 1st pain-free day since Sept. 08. Countdown begins....

6/12 - to present symptom free.

TO: new LLMD

FROM: Mom

RE: 2nd Opinion? For Romy

Hi Dr. Marra. I wanted to see if you could possibly consult with us. Or take over if it’s appropriate. We are at a major crossroads with her treatment regiment with LLMD. Romy has been slowly improving the last 1 1/2 years under the care of Dr. J and Dr. H. As of JUNE 11th, Romy is symptom free.

As of our last phone consult in May with LLMD, our current doctor, he wanted to take her off abx end of this month, June, totaling 7 months on this last protocol for Bartonella. I questioned this since she still had a remaining chronic symptom (tiny headache left) and felt nervous about “fixing what isn’t broken.” Also, I know Dr. J keeps everyone on abx until they are symptom free for at least 2 months.

She has been on a Bartonella protocol as our last long-term regiment:
Rifampin, Azithromycin, Plaquenol, Nystatin, Condensed Cowden

LLMD assured me that summer is a great time to “see where she is” and that his patients that do the 2 month symptom-free also relapse. He also said we would be keeping her on anti-microbials, the Cowden Protocol, which has been quite magical for us with losing her symptoms.

In a nutshell, Romy is a “pain kid” and started out with all over body pain (26 that I could count) that was unbearable for about 6 months until she turned the corner with the right co-infection diagnosis and abx treatment. Slowly over time she lost symptom after symptom. Long-term aggressive antibiotics and the Cowden has been our core protocol. That and absolutely NO sugar, 90% GF, organic, whole foods. And lots of exercise even though aerobic activity had to be limited due to triggering flares.

I suspect she was born with Lyme, but got a 2nd, super virulent infection back in the spring of ’08, although who the heck knows it could’ve been earlier. The pit of hell that we lived in of Ridgefield. That was when she started throwing flu-like symptoms.

I am so torn about what to do. Clearly LLMD has brought her to where she was today, so why would I question him? But, my gut isn’t settling with it. I am also sick, so I am not comfortable with my judgement alone on something so huge.

I would love to work with you on figuring this out if that is something you would do.

Please give me a buzz once you are free. I have a 49 page outline that I can email you with all her symptoms from birth, and I would of course fill out the forms you have on your site and sign the 2 forms.

Mother going crazy even though things are good.

6/12
tempary flare; stomach ache from smoothie, then hotdog and fries

6/14
field trip Cathedral Park, field day.
temporary flare in late afternoon: right heel, frontal headache, fatigue

6/15
last day of school
left ankle, tickly throat, headache right side of head, sniffing, allergic trigger?

6/16
headache after tomato soup and chicken salad

6/17
headache after tomato sauce in GF pasta

6/18
flare afternoon for 1/2 hour, hungry, headache, shins, fatigue

Symptom Summary as of 6/20

General comments: Homework sitting position still needing modification. Tilts head to left. This avoids “swords” in back of neck, sometimes forehead. Tolerates hairbrushing much better. Still needs to sit for major sessions or else she gets tingly pain in her head.

Flare Symptoms:
Tics: head nodding, sniffing, throat clearing
frontal headache
shins
stomach ache
occasional ankle or elbow pain, very minor
allergy sx: itchy roof of mouth, itchy eyes, sore throat

Triggers: grass, mold, food, glycemic response

6/20
drinking more water, going to bathroom more, super hungry, eating more, headache, chills. chromium 200mcg

6/21 new LLMD
hypothalamus
Babesia
CD57
IGf1
For neuro sx: FOS, fatty acids, chromium and the other herbs
Neuro sx from exam: throat/bumps on back of tongue, hyperflexion, clammy hands
STOPPED: zythro, rifampin, placquenil

CLAMMY HANDS THIS DAY FORWARD OFF AND ON.

Saturday, Recital Day
head nodding tic, that’s it. no flare, did great.

Sunday
shins, headache b4 bed at 1020pm.

6/28
hot/cold temp changing, superhuggy, later a stomach ache and bad headache, sweaty before bed.

6/29
BEGAN: Biaxin

6/30
9pm rock in throat, shins, headache, reaction from fresh green beans

7/2 - 7/5
BEGAN: Allinia 7/2
flare b4 bed, headache, NEW shin tic (a movement of straightening legs), rock in throat, tired

7/8
BEGAN: Bactrim
hand shaking tic triggered by wearing a ring at dance camp. head nodding from brushing hair, more sensitive

7/9
mng: fatigue, slept in till 9a, tired for 2 more hours

7/12
both heels, both ankles b4 bed

7/16
allergic, mucous. Wyethia better. Bad nite with mosquito bites, itchy and super swollen. Hot and cold, woke up at 3am.
hands tic right after starting first 3 new herbs (Blt, Crypto, sweet chestnut)

7/16-7/19
tics worse

7/22
DR. T appt
mycosis 2
mycobacterium -147.
pineal -205.09 (from radiation)
sympathetic excess, from ANS

Stomach ache at Andina during dinner

7/23
FLARE: headache, fatigue, rock, chest tight (mac and cheese made rock worse)
burbur (no), Nat M (better)

7/24
RASH from trying to add Yarrow. Added KDrain a few days ago, flared minor so I reduced amt to 5 drops.

7/27
tics worse, especially vocal squeaking

7/28
mng flare, didn’t go to camp. headache, neck hurt (NEW), and fatigue
cocc (no) gels (no) nat. m. (no)

7/29-7/30
tics, fatigue, lots of activity and stayed up late

7/31
tired, whiny, tics (vocal) worse.
hot towel, hot soup all helped.
hand shaking, head nodding ( a few times)

7/27 - 8/1
BMs loose and flaky like in small pieces.
no cramping or discomfort.

Symptom Summary as of 8/1/2010

General comments: Symptoms almost every day, mostly tics and fatigue. If she goes to bed late she will get a flare. Very allergic to mosquito bites - very swollen. Her elbows are now actually sensitive to pressure. Allergic response to

Flare Symptoms:
Hypothalamus dysfunction: drinking more water, going to bathroom more, super hungry, eating more, alternating hot and cold before bed.
Clammy hands since day of last visit - on and off but almost every day.
Hands tic right after starting first 3 new herbs (Blt, Crypto, sweet chestnut)
NEW shin tic (a movement of straightening legs)
Other tics: throat clearing, sniffing, squeaky noises. Hot towel and soup help.
Seasonal allergy sx gone
MAJOR CONCERN: BMs loose and flaky like in small pieces - she takes enzymes with most meals and also probiotics 2x daily.

Zyto Stressors:
mycosis 2
mycobacterium -147.
pineal -205.09 (from radiation)
sympathetic excess, from ANS

8/3 LLMD appt

- high lipoprotein A. heart disease, hypercoagulation, heparin? red rice yeast, less fatty diet

hemobartonella positive

Babesia duncani positive

for BMs more fiber, better food.

vasodialation, vasoconstricttion

regiment
plaquenil
alinia
biaxin
nystatin

hi bp

elbow, rib sensitive, cold toes, clammy hands, cobblestone tongue from post-nasal drip

for babesia dincani BLt and Crypto which she flared on. chinese herb she is fine on. suspected c-diff so we got flagyl filled just in case, but turned out to be the BLt/Crypto
flare sx were: loose BMs, cramping after, stone sensation in chest. added culturelle & new probiotic from LLMD. Recovered starting friday. Stool test was sent anyway.

8/6
tired

8/7
shins, heels, soles, top of feet after eating chipotle. lasted 15 min. felt cold before that. stools continue to be normal.

8/8
Soccer Picnic
more emotional, tired, wearing jacket
chest, nausea after pills
stone sensation

8/9
good until night. hot & cold, woke up with stomach ache several times during nite. new stuff is biofilmx and pin wen

8/11 Wed
elbows & wrist are okay, normal. L elbow “almost” gone.

8/12
mild hand-shaking tic, throat clearing, sniffing while watching a movie (at rest)

8/13
throat clearing, sniffing t.v.

8/17
shins, fatigue, bad head nodding from that while at Mt. St. Helens

8/18
tired

8/24
FLARE DAY: lyme stomach, tired. Ars - no, seltzer/baking soda, almost 100%. Then bad again, small headache and fatigue
NITE: woke up 5 times, each time with a different sx - headache, tickly throat, sore throat, stomach, shins. Diarrhea

8/25
tired but no other sx. taking break from regiment except for silica since the flare was yesterday. later on a headache

8/25 Zyto
lymph, EMF, mold, strep, clost frigidearnis (sp), legionella (bad weather).

8/29
food flare from lunch (pasta, pistacios)
pain behind ears, both thighs.

8/30
flare-ish day. Lyme hunger after Chipotle, hand shaking tic, both legs on and off all day. frontal/occip headache b4 bed

8/31
back to normal but now has a new tic, the hannah montana mouth tic. last just a few days.

9/1
normal

9/2
frontal headache, fatigue, emotional.

9/3 - 9/6
emotional. Nat M didn’t work and caused a flare

9/10 - 9/11
nightime headache, lasted till next morning

9/13 monday - blood draw
FLARE
middle of night flare, came into our room.
mng - stomache ache, farts, lots of BM, rock in throat
late morning - chills, headache, fatigue, sensitive to touch, vocal tic
aconite, ars, cocc - all no
gave her clay, eup/aurum blend.
flare ended around 1pm

9/14 Tuesday
normal

9/15 Wed
FLARE
woke up fine and happy. Went to school, had flare 2 hours from taking anything and had to come home from school. Flare symptoms: low fever, clammy hands, bad fatigue, bad stomach ache.
nothing worked, then tried 30c Carc direct water dose and she was 1/2 better in 5 min. another 1/2 hr she was all better. Seemed my theory of a miasm block worked.

-later in day her hands were SUPER clammy and she was slightly warm.

9/16 Thurs
at school, good mood this a.m. came home with tickly throat, gave her a 2nd dose of Carc 30c with succussions and it got rid of it. Got a mild headache later, a possible agg., but then it went away after a half hour.

9/17 Friday

9/18 Saturday (Yom Kippur)

9/19 Sunday
allergic reaction to chocolate muffin

See 10/21/10 post - finally figured out it was food allergies - Leaky Gut Syndrome causing the flares rather than die-off.

Been virtually flare-free for weeks after I figured it out.

Skiing and Talent Show Week

2010-03-25T17:34:00.000-07:00

The biggest obstacle to my daughter having a "normal" life is her chronic shin pain. She goes about her day with her headache and stomach pain, minor enough to not interfere with her day. But the shin pain does limit her activity from taking long hikes with the family, running extensively at recess, and playing hide and seek in the neighborhood. Going up and down stairs and hills eventually cause her shins to flare. She will complain usually just at the end of the steep hill from the bus stop. Our house has stairs, so the pain will crop up at the end of the day before bed. But, she does play soccer as I've mentioned.

This week however we've found yet another wonderful surprise. She can ski! We met my husband's family for a week of skiing. I figured I wouldn't ski, and that I'd hang out with my daughter because most likely the skiing would cause pain. Amazingly, the different leg motion - sliding rather than walking or running, did not flare her shins! Romy is a natural athlete and really picked it up. She was skiing blues by the 3rd day! Definitely not my side of the family that's for sure.

Our LLMD has really stressed exercise, and so the past year I have coaxed her along to continue ballet class even when not feeling well, to run around outside, and to play soccer. I can see what a difference it makes and contribute her healthy status in part to all the exercise. I was overwhelmed with joy to see her participate with family all day outside skiing! I think it helped her confidence and was such a change of pace, something any of us can use.

She had only one minor flare - before bed her headache, stomach, and shins were worse. Arsenicum worked to bring her out of the flare and she quickly went to sleep. Her neck did hurt a few mornings, I think it was due to the heavy helmet. Her neck and head continue to be delicate areas. We did see her head nodding tic return one night, just a few times. We had a regular cyclical flare the previous week, so we were home free this week.

It's been a stressful time for mom, glad this is all over. I am sure my mental strain caused the cold I now have. It will pick up again in May and June for the next performances. Luck of the calendar will hopefully be on our side.

Her flare last week was during talent show week. I was hypervigilent keeping her as healthy as possible to make it to school and to participate in every rehearsal. She was a champ, doing her dance routine with her friends with a low fever and body aches. She almost didn't make it to dress rehearsal, but the flare subsided. She had dark circles and looked a little pale, but that was it for show day.

Doing Great

2010-03-04T17:29:00.000-08:00

Romy is doing great - we are back in business after that Septra flare. Most notable is her positive mood and how much energy she has in the mornings. Just a short time ago I'd wake up with anxiety about what the morning would bring upon waking her up. She could barely get herself together, so miserable, out of sorts, just exhausted each morning. It took her a half hour to just sit before doing anything. And this is after going to bed no later than 8pm, usually 730 to 745pm. I am happy she is doing so well.

Septra

2010-02-23T09:48:00.000-08:00

Last spring, about 6 months after diagnosis, Septra was a great drug for us. Really turned things around. LLMD wanted to add this to her regiment to see if we could move progress along faster. Her current regiment is making her progress well, but as we know with Lyme, things are slow. She flared about 9 hrs after each dose, so I stopped after the 2nd time, and I left a message for LLMD to see what to do.

Normally 4 to 5 days pass before we see a shift - either a die-off, a positive one, or no change but minor sx differences. This more immediate reaction is concerning - is it an allergic/immune response? or a die-off that is quicker because her body knows this drug already? Or is it a different brand of Septra that is causing this? The dosage was halved since this is a 3rd abx, so maybe this why?

Ah....biomedical, a love/hate thing. tic toc staring at my phone.

Okay, got the word....take her off Septra. The flares are too severe. Keep her on her current regiment that is working until next appointment. I think I agree with that answer!

Rifampin and Soccer

2010-02-20T13:43:00.000-08:00

We've seen improvement since we started our new Bartonella protocol in December. The flare pain is classic Bartonella, so interesting and funny to be excited about symptoms matching to just one disease, not 3. Seems like her Babesia and Lyme symptoms have gone away. Knock on wood!

So after another awful flare week due to Romy's new Rifampin/Cowden/Dr. Toby regiment, we made another dent into chronic pain. Arm pain that has been around for 1 year and 4 mos is now gone! Her headache has also improved to the "almost gone" status. Hurray! So, we are down to 3 pain areas:

Frontal headache
Stomach pain
Shin pain
Tics: sniffing, throat clearing, "hard to breathe" vocal tic, and very very occasional head nodding and hand shaking. These are barely present except when she is tired at night.

Fatigue, emotional instability are still present but continue to grow milder.

Romy's friends all play on a soccer team. Due to aerobic activity flaring her, we haven't considered any team sport. She is also not interested, loves dance and acting. But, I decided to veto her objections and risk signing her up. I figured it's a good way for her to connect more with her new friends.

I was in tears - she only had to rest ONE TIME during the practice when her shins were hurting too much from the running. They are going to have her play goalie, less running which I think is a good plan for now. She was happy the entire time and grew more sure of herself as she saw that she could make contact with the ball and didn't stand out as much as she thought she would as a new player. It made me so happy just to live today and see her not in too much pain, holding hands and skipping around with her friends.

Here is her current regiment:
Rifampin
Azithromycin
Nystatin
Plaquenol
Condensed Cowden - month 3
Dr. Toby sprays - Liver, Lymph, ANS, and Radiation
resveratin
Probiotics: rotate Theralac, Ultraflora, VSL3, dose of 3 to 4 pills a day
Nutritionals: omegas, magnesium, enzymes, folapro, stress B, trace minerals, vit D3
Immune support rotation: vit C, sambucus, lapacho, olive leaf, temple guardian (a chinese herb blend from energetix), and occilococinum
detox maint: Pure Body Clear by Energetix. Zeolites included under Cowden
homeopathic drainers: energetix and rotate other brands

How this flushes out: vitamin box morning evening. 14 doses of drops/sprays into a shot glass - morning, after school, before dinner, before bed. Abx after lunch at school, b4 bed

Bud Update

2010-01-24T14:37:00.000-08:00

Well it's for sure, my 8 year old daughter has one bud and one on the way. We drew blood this week to make sure her gonadotropins are in check. Both the N.D. and our LLMD are not that concerned - technically it's not precocious puberty unless she is 7. I could care less what is now considered normal these days, it's way too early and it's probably due to pesticides like Dr. Toby says. She has been on a pure diet her entire life, as pure as the food these days can be on most days. I am keeping my fingers crossed that no other signs emerge for another couple years at least.

She continues to do well the last few weeks - her flares and fatigue are minimal and her bowels/food intake seem to be less of an issue as triggers. Her remaining symptoms are frontal headache, upper arm pain, shin pain, and stomach pain. When I type it out I get a bit nauseous, but I have to remain hopeful that they will be gone one day. And also be mindful of where we were last year at this time. We are very lucky.

Bud

2010-01-08T19:15:00.000-08:00

She's only 8. I just discovered this about an hour ago on her left one. Unfortunately I can't use the word on this blog because it will attract the perves. Sigh. I will get confirmation from our naturopath early next week. Have our regular phone consult with LLMD on Tuesday. On that ledge again. Of course it has to be from this formidable disease. We'll see, how quickly things can turn to shit.

New Year Update

2010-01-02T10:50:00.000-08:00

Last year at this time was one of the darkest, scariest time as a parent for me. The peak of my daughter's illness, the big Disney flare that pushed us into our new lives as slaves to the formidable diseases of Lyme. January and February of last year was the bottom for us, and I literally pray every day we do not return to that level of illness again. The fact that we COULD haunts me.

But back to catching up since October - The end of summer she really improved, losing 10 of her chronic symptoms in just 1 1/2 months on a modified Cowden protocol. Pretty incredible. We moved across the country and got settled and her improvements held. Then, like everyone here, she got the swine flu. It was a very scary time, everything got worse and her tics worsened on top of having croup symptoms for over 2 weeks. More to the story, but I just don't want to relive it right now. It was such a horrible time. She is now stable - on the Condensed Cowden, antibiotics, probiotics, and vitamins and homeopathy support.

Her current symptoms are:

4 body chronic body pain areas that never break:
frontal headache (improved as of this morning as I write this!)
arm pain (top of the upper and lower arm), not elbow or wrist
shin pain
stomach pain
Other symptoms:
emotional (hypersensitive, mood swings)
fatigue, mostly before and after bowel movements and meals/snacks
tics: head nodding tic, shaking hands tic, and dragging feet tic

A new treatment we added just 3 weeks ago are sprays from Dr. Toby Watkinson in San Diego, CA. We do zyto scans with him to determine which ones she needs. Since Romy was off everything at the time (per our LLMD during the flu), we could assess the new sprays on their own. They really helped with the other symptoms: emotions - she was so bad, very aggressive without knowing herself why, crying all the time, and extremely moody. This all dramatically reduced with the sprays. The fatigue reduced and so did the head nodding tic to barely at all. That was huge for us.

We are doing our 2nd scan on Monday - hopefully we can see even more improvement, maybe crack the code into the chronic pain once again. The Cowden seems to be really working as well. We are hopeful.

Romy's Timeline from 0 to 8 Years Old

2009-10-18T11:10:00.001-07:00

Romy D.O.B. 5/3/01
Lyme Symptom Timeline

0-2 years old:
Numerous croup infections - one hospitalization. Several rounds of Orapred. Whenever sick, the throat was always the first symptom.

2 years old:
Croup reactivity continued. Romy presented with very mild on-again-off-again eye blinking at 2 years old, but then it disappeared over time. Our doctor chalked it up to perhaps allergies or some kind of developmental glitch that would eventually sort itself out. Eventually “grew out” of the croup.

Treatment: No treatment other than meds for croup. Nebulizer at home. Steam baths, alternating hot and cold.

5-7 years old:
The eye blinking returned, and now that she was older she said her eyes sometimes felt dry and that “they bothered” her. Around the same time, my older son, then almost 8, developed the same thing. After researching and reflecting back on my children’s atypical response to illness, it appeared both kids had a version P.A.N.D.A.S. This was confirmed by positive strep tests for my son with our ped, along with EAV testing done by our nutritionist.

The blinking would come and go, exacerbated by seasons, weather, and exposure to germs. If 4 kids were missing from school from strep, 5ths disease, or a stomach flu, my kids would be blinking like crazy but no other symptoms.

Treatment: No treatment recommended by ped. Mother found that no antibiotics are recommended for P.A.N.D.A.S. even if a doc recognized it as a disorder.

7 years old:

3/31/08: facial tics seemed worsened, figured it was the flu bugs going around and the season change once again. This time they were worse and now included:
sniff
saliva “swishing”
mouth widening
side of mouth downturn
throat clearing
eventually finger flicking

Treatment: No treatment for tics recommended by ped. Mom researched tourettes and other possible disorders. Mom used homeopathy to treat tics with the guidance of a pediatric homeopath.

4/10/08
flu-like symptoms
continued to go to school and activities.
no fatigue or mental changes.

Treatment: Continued to cover symptoms with homeopathy - Gelsemium and Bryonia reversed the symptoms.

4/24/08
neck pain
urge to arch neck backwards
bad headache all over head
chest hurt
stomach ache with stone sensation
some fatigue, would pass quickly

Treatment: Continued to cover symptoms with homeopathy.

May/08
Persistent cough all through summer. Exercise, laughing would induce cough. Sounded like whooping cough. On again off again.

7/1/08
facial/neck tics; varied
sore throat
throat stone sensation
both upper/lower legs ache
both upper/lower arms ache
appetite problems, food aversions
sensory integration problems (sensory seeking, rubbing arms against tables, leaning into furniture, more “clumsy”).
some fatigue, would come and go

8/1/08
Symptoms returned quicker after homeopathic treatment and worsened as time went on.
Cough seemed to be gone.
flu-like symptoms continued on and off.
tics varied on and off - new ones throat clicking, teeth chattering, tip of nose sensations.

July/Aug Treatment: No treatment recommendations by ped other than going to a neurologist for the tics. Mom declined since she didn’t feel they could help until Romy fit a perfect disease profile. And even then, many diseases don’t offer any cure with meds. Flu-like symptoms seemed just the flu to mom and the docs. Continued with homeopathy, although the treatment stopping working as well. Ironically, Cina, a remedy commonly used for parasites, covered all her symptoms for a while, on and off.

8/31/08: acute “flu” second week of school

New symptoms:
101-102 temp
spongy heel sensation
food aggravates
worse sitting
loose stool
nose stuffy

Old symptoms:
neck arching backwards
arm soreness
leg soreness
sore throat
head ache
stomach ache
stone sensation in stomach
right rib pain
chest pain
tics were suppressed/gone

The symptoms would get better during the day and trick me into thinking a remedy (homeopathic) was working and that she was getting better. The doctor thought it may be strep or some kind of flu. Knowing next to nothing about Lyme, I asked for a Lyme test, thinking about her flu-like summer and her tics being worse. This is CT after all!

Treatment: Doctor declined my request for a Lyme test, and Romy’s strep test was negative.

Romy was back to normal and even tic free the next week. I thought, hurray! Whatever it was probably lingered all summer and finally manifested and brought the tics out as well.

9/6/08
New symptoms emerged after Romy recovered from her acute: sore chins, minor sore throat. A remedy Cocculus covered it but then stopped working.

9/12/08 (plus or minus a day or two)
And to my horror ALL of Romy's symptoms returned.

end of Sept
Good timing, I went to a Lyme disease talk held at a local Holistic Moms group. I started shaking as I read the ILADS checklist. There were all of Romy's symptoms including tics!

10/3/08

Blood draw for first IGeneX with newly found LLMD. Tested for everything including coinfections and CBC stuff.

10/3-10/6/08
very bad weekend for Romy. No energy, overall body pain. On couch or in bed the entire time.

10/6/08
Began amox 2x a day with 400 chewables.

10/6 through 10/23
Initially the antibiotics seemed to stop the decline and returned a little bit of energy back to Romy. I think she started to get used to the symptoms, and rallied as well. No improvement.
New: joint pain: ankles, wrists, and hips, back pain

10/21/08
Saw renouned pediatric homeopath. She too recommended antibiotics and supplements for immune system.

10/23/08
Increased dosage to full amount 3x a day of the 400 mg tablets of amox
New: burning, stabbing overall pain

end of Oct through November’08
dizzness on empty stomach or fed sugar.
felt like falling over to ground on a few occasions.
mood swings, irritability, sensitivity
Got Romy tested on the EAV machine through our nutritionist. Tested positive for borrellia and for bartonella (as far as we can tell). On a supplement regiment, a collaboration of mom, nutritionist, homeopath, and LLMD.

Researched and purchased a Rife machine for next phase in treatment, post antibiotics.

11/10-11/17/08
New symptoms:
The last two days Romy has noticed her hands are weaker. She can't open the tube of toothpaste like she usually can. Alarmingly, she felt like she couldn't hold her "smoothie" cup (indeed it's heavy, a coffee mug) and asked for a straw. The good news is that she's not scared, she doesn't get the big picture. She had a crappy week last week (11/10), seemed to be a herx week and stayed home a lot - two afternoons I got the call from the nurse, and one full day right off the bat.

Ongoing Mental symptoms: More irritable, tantrums, fragile in general.

Awaiting LLMD appt 12/15/08 and ped LLMD appt 2/24/08.

12/3/08
really crappy last few days. A flare?
New Symptoms:
“sand in eyes”
photosensitive
skin overall sensitive, sensitive to pressure
need to arch upper back, doesn’t ameliorate, possibly a tic.
Romy reports “every single spot, part of skin, moles, hurts.”
teeth hurt
tip of nose painful
fire sensation in head, stomach, and all over
sour stomach
chest and stomach swirl and connect
butt, hips, ankles and heels particularly painful
nauseous riding the bus

Old symptoms: same as before.

12/4/08 flare ends, chronic overall body pain continues. Back at school.

w/o 12/8: Took Romy off all homeopathics and switched to mineral earth to see if there is a change.

12/9/08 feels heavy, feels like “falling down” after a bagel. Shins flair, had to use wheelchair at a dept store since she was in too much pain to walk.

12/11/08 hard to breathe, feels heavy, chest, stomach, heels, arms/legs all WORSE, rock sensation in stomach and throat, “bee stings” on arms/legs/heels, swords/fire all over. Pain travels from heels up legs through body to head.

12/12/08 headache all around moving, dizzy, “swirly” in head, nauseous.

12/15/08: Saw Dr. Horowitz! Romy’s stomach and headache worse during the visit. NEW MEDS: Zithro and Ceftin

12/18/08: Flare: Head whirly, steamy, fire. back of head headache. Stomach: nauseous. Chest: terrible. Shins, heels, and hips very bad. Sensitive to any pressure.

12/20/08: woke up with a NEW SYMPTOM foggy vision. Romy described it like having the fog we see outside in the house. She also reported blurry vision. I gave her fresh parsley and after about an hour these flaring symptoms went away.

12/15 - 12/20: Bowels dark, almost black, solid. Then more dark green. Back to brown. Assume normal adjustment to new antibiotics and nystatin die off.

Intermittent periods where chronic wrists and hands are better for an hour, two hours, then symptoms return.

12/21: Winter solstace, sledding. No flaring today.

Week before break: Head and stomach better for a few hours a couple days.

Holiday break: More fatigue, shins hurt after climbing around on rocks.
Gigantic Flare at Disney:

She was a trouper, still wanting to go on rides even though she was fatigued and feeling worse. We either had her in a stroller or was carrying her the entire time (as planned). But it was pretty exhausting for us parents since we couldn't keep the stroller in line. It was also crowded (yeah it always is).

By the end of the day she was really bad, getting a low fever with chills. She slept during the drive to the hotel. By the time we got to the hotel she was shaking from the chills and had some neuro. symptoms - her head was shaking and nodding and her tics were very pronounced. She started a new tic, small squeaky vocalizations that sound a little like she was humming. Very scary! It didn't help that the elevator was down and we were on the 12th floor. We were also surrounded by very happy tipsy people getting ready for new years. "Yay".

Here I was at a crossroads, holding my 68lb daughter while waiting for the service elevator since the regular ones were out and there was a half hour WAIT in line just to get to our floor. It was too high to walk, plus she can't walk! At that moment I didn't know if I was going to take her to the hospital or put her in bed. What would they do at the ER anyway? She's already diagnosed and on meds. I feared her going into shock, and it was up to me to figure out what to do. What would be less taxing? A busy stressful ER trip? I wasn't sure. Luckily she seemed to get a tiny bit better as we got to the room, so I put off a hospital trip since she stopped shaking. She was in a lot of pain - her head and stomach, so she didn't sleep very much and neither did I. I stayed awake to monitor her, making sure she didn't get worse and need a hospital.

By morning we had to call it, so we decided to be conservative and delay her flying for another day so she could rest. She was much better by morning, walking around, arguing with Eddie, happy, but I was too nervous. Eddie, Burt, and Marcella went ahead as planned.

She rested all day and had no flares on the flight home. I kept her in a wheelchair at the airport and she was relaxed and content on the flight. By the time we got home, 3 of her symptoms were all the way gone - her headache, stomach, and chest. The first relief she had since the week before we left. Her symptoms returned the next morning, but I am hopeful the giant flare was a sign of a big fight and healing.

1/2: Head almost better, neck partly better, chest all the way better. Still have “regular” Lyme symptoms of : stomach, shins, heels, arms & legs, wrists, back, knees

1/3: Throat better for a couple hours

1/6: Bad stiff neck at school, wanted to come home it was so painful, but teacher didn’t let her go that day.

1/14: wrists and hands better

1/15: Missed school - chest hurt, head shaking “no”, hands and wrists all better. Regular Lyme symptoms. Shins bad before bed.

1/18: In the middle of the night Romy explained she feels “hot, then cold, blankets on and off.” Along with it, her head or her stomach will feel “weird.” Not sweaty, no fever.

1/19: All regular symptoms today. About an hour of “everything worse”, shins remained, around 6pm.

1/20: Missed school. Woke up in morning with “everything worse”, including vocalizing, and her frontal headache feeling “weird, like things moving back and forth”. By 3pm she was back to “regular” Lyme symptoms.

1/21: Missed school. Woke up with similar morning, “everything worse”, including vocalizing. By 2pm she was back to “regular” Lyme symptoms, but hands and wrists all the way better, and shins slightly better. Shins is the second last symptom that appeared. Wrists were the last, and they are showing intermittent relief. Shins are maybe next, maybe we are going backwards?

1/22 - 1/25: LLMD appt. Protocol adjusted. BEGAN 1/26
Cefdinir: increased dosage to 5ml
Zithro: rotate 4 days on, 3 days off 1x day 1 tsp
Rifampin 150ml 2x day
Glutathione
Probiotics: Theralac, VSL3
Grape seed extract
Olive leaf
Parsley/Burbur for flares
Overall, the doc thinks Romy is responding to the new med protocol she's been on for one month. She is 5 to 10% better overall, and they are happy she is responding to the meds.

She has Bartonella and Babesia, two of the Lyme coinfections. We couldn't capture these on this latest blood work, but clinically this is what her new diagnoses are in addition to Lyme.

They tinkered with her current meds and added two components, another antibiotic called Rifampin,and added weekly IV treatments of glutathione, an amino acid group key in detoxification. They are increasing Cefidnir and rotating Zithro. Nystatin is the same, and her probiotics have been adjusted.

One of her worst symptoms is her frontal headache, and this is what keeps her from going to sleep at night. Very painful. So they theorize there is toxicity in her brain/nervous system that's not getting out. Lots of dead Lyme. The glutathione will assist in getting rid of the toxins which will then get rid of the headache.

We drew our monthly blood, and at that end they injected her with the glutathione since the needle was already in. Within 20 minutes her headache was 98% better. And this is during a flare (she was having a flare day along with a doctor day). Her headache returned that evening per usual, but a good sign we are on to something. Since the trial dose worked, we are going to do an IV 3 times a week

I wasn't sure at all if she was better or not until this appt because her symptoms are so complex: chronic (better), nightly flares(worse), and a major flare (worse).
Missed school, recovered over the weekend. Back to “regular” Lyme symptoms. Didn’t start new antibiotics yet because Rite Aide didn’t have it yet.

1/26: First full day back at school. Still no signs of hands/wrists better. Throat worse from oral glutathione. On increased dosage of Cefidnir, but nothing else different until tonight where we’ll introduce the new antibiotic for Bartonella.

Parsley/Burbur make flares worse so stopped it. Glutathione didn’t continue because of the acute.

Next Steps: Awaiting ped LLMD appt.

1/27: Throat worse and now has mucus in nose. Sniffing, sneezing. I now think it’s an acute on top of the Lyme. Spongia helped the throat this morning. Pain moving around from throat to shins to heels. Rock in chest before bed.

1/28: Regular symptoms all day, no relief in hands/wrists. Throat still worse. Complained of stomach before bed, hasn’t happened in a while. Voice scratchy sounding from sore throat. Very emotional today although it was a snow/home day.

1/29: Regular symptoms all day, tiny relief in hands only that lasted a small amount of time in the morning.

nite flare -” swing and kicking my head, feels heavy, man on a swing kicking”, throat to stomach weird/nauseous, shins and shoulders worst/painful/sore/burning. Head and shoulders feel heavy.

1/30: Everything worse but did go to school 1/2 day. Headache made her come home. Hands almost “back to regular”. Trying homeopathic remedies all week. Spongia helped with throat early on but nothing else is working. Parsley/burbur/Glutathione oral all don’t help. Glutathione oral makes her worse. Nightly headache bad (swings)

1/31: Emailed with British renouned homeopath whom recommended I try contacting Canadian renouned homeopath/M.D. to help us since he takes miasmatic theory seriously. Back to regular Lyme symptoms but no pain relief in hands/wrists. Nightly headache really bad (swings).

2/1: Regular Lyme symptoms. Nightly headache not as bad, maybe because we got her to bed earlier than usual, maybe avoided it? Or is it getting better?

2/2: Everything worse upon waking. Headache, back (hard time sitting upright without so much pain), and shins the worst out of all the pain areas. Since she was home did a rifing sesion of Bart, Babesia, and viruses. Looking into infared sauna.

2/3: acute cold/flu that is exacerbating Lyme sx. Throat is main area of acute. Brother has flu symptoms as well. home.

2/4: Bad flare - vocalizing, head shaking, chills, low fever, one double vision moment, red itchy eyes, along with bad neck tic and pain, back pain, shin pain and headache. Everything worse. home

2/5: Thursday home. Flare continues all day. At night, our old friend the croup returns at night. Homeopathy remedies don’t work, potency too low, so we give her the albuterol we had that was expired by 2 years, and it worked.

2/6 to 2/8 Friday and through most of Monday she slowly gets better. Overall, acute lasts a week.

Monday 2/9 thru Presidents Weekend: She is great. Overall her mental symptoms of irritability, sensitivity, and being very emotional is a little better. Energy better. We see moments of “the Real Romy” shining through. She continues with all her “regular Lyme” symptoms of 15 pain areas. Still no pain relief in these. Nightly flares are MUCH better, her headaches and shins are a tiny bit worse at night but no longer interfere with sleep.

Since she made it through a FULL WEEK of school we decided to make a run for it and go to Philly for the weekend. Just 2 1/2 hours away, can easily get home if she has a flare. Extended walking/running exacerbate her symptoms, so we took a stroller with us, made it very easy to for being out all day walking around. Had one flare on Sunday that lasted 3 hours - chills, fever, shins, headache, stomach, vocalizing/throat clearing, but not bad, didn’t have to stop activities.

Also had a NEW SYMPTOM: Pain between thumb and index finger on left hand. Joint pain in fingers (tarsals) worse during the flare.

Tuesday 2/17 - Sunday 2/22:
Everything back to “regular Lyme symptoms”, back to school, continues to have a great week where overall her symptoms seem a notch better. Flares at night are almost gone, but shift to morning, headache is worse upon waking but gets better after she is awake for awhile and after food.

New Symptom: Has blue swollen spot on each thumb. Lasts all week.

2/18: Just a morning flare that lasts about an hour.
New symptoms: hot itchy watery eyes, stuffy nose Euphrasia helps (a homeopathic remedy). Is this perhaps an allergy not related to Lyme? Stomach ache/feels weird, nauseous, bad headache/shins.

2/19: New Symptoms: Calves, achilles heel area in morning only.

2/20: New symptoms: neck, calves, headache in morning. Forearm and elbow painful for a couple hours at school, ice pack helped while at school.

2/24: Saw ped LLMD; Took Romy off: Cefdinir and Rifampin. Increased Zithro 1 tsp 1x a day. Added Mepron 1/2 tsp 2x a day. Nystatin stayed the same, 2ml 2x a day.

He really got to the root of some of Romy's sensory issues that have worsened. For example, her right eye has a convergence problem which is probably the answer to some of her disorganization. She also has some double vision. She can't do some of the balancing and walking exercises either.

He manipulated and measured almost every joint in her body and worked a lot with her arms and legs in general. He would say something like "Romy, does your left knee hurt more than your right knee?" Romy would say "How did you know that?" And I can't tell from the naked eye there is a difference.

He came to the same conclusions that first LLMD did without him knowing that he did - that one of her coinfections is the culprit in the rate of her recovery, a hard to treat Babesia c. He changed her medicine to a new one that treats Malaria called Mepron that looks like yellow school paint. He took her off two other medicines and increased her dosage of Zithro which is great for intracellular. He didn't talk about supplements or diet, must not be his thing.

He couldn't answer my question about the kids' facial tics. He said "It's hard to say." He also said there could have been multiple bites/exposures.

So far she is tolerating the new medicine - she did have a minor rash on her knuckles of one of her hands but it went away with no other signs.

2/25: Began Mepron and the new protocol.

2/27: new temporary symptom: calf tendons sore

2/28: Rash on hands, burning sensation. Neck pain worse, mouth pain worse, headache worse

3/2: new symptom: head dropping forward tic, neck sore from this movement. Very noticeable. Rash burning, stinging.

3/3: morning flare (headache, skin sensitive, chills, head dropping foreward tic worse, everything a little worse.

3/4: afternoon flare (stomach, neck tic, and mouth)

3/3-3/10: bad neck from head forward tic

3/11: neck sore from head forward tic, right thigh, right forearm, right groin

3/12: neck, right arm, right leg continues. “Regular” headache still there but a little better. Head forward a little better. Hands sting a bit.

3/13: Morning flare: New headache; sensation top of head and sides. Right leg still bad, bad sore throat. Head foreward gone.

3/14: Sore ankles after jumps in ballet. New symptom: stomach ache (we call it her waste), band going around lower stomach to back. right leg overall worse still.

3/15: Back hurts (the band) prior to BM and afterwards. Waste hurts - burning, hot, painful. Left armpit feels swollen. Right leg still hurts.

3/16: Everything back to “regular” symptoms, but with right leg all over hurts more (thigh, hamstrings, calves). Right shoulder hurt but just lasted that morning. Back and stomach hurt (the band) off and on during day, timing with BM.

3/17: Everything back to “regular” symptoms, but with right leg continuing to hurt all over (thigh, hamstrings, calves). Band thing gone.

3/18: Morning flare: top of foot (new), nauseous stomach, headache worse, wrists worse, overall legs worse, chills.

3/19/09 - 3 Week Summary 2/24-3/19)

RASH:
An hour after first dose of Mepron got a minor rash on right hand at the knuckles. Was hot and had a mild burning sensation. The rash comes and goes, only noticable during a flare, but not all flares. Now on both knuckles. Otherwise, the area is a little dry and scaly looking.

“Regular” Chronic Pain (see list): NO CHANGE

MAJOR CHANGES:
Daily flares are gone. Shins are no longer a major pain area for flares (still continues as chronic pain).

OCCASIONAL FLARES:

We’ve only had 3 flares, lasting somewhere between 2 to 5 hours since our last visit. Pain areas continue to be headaches, throat, stomach. Chills, low fever/sweats, skin sensitivity, light sensitivity, vocalizing, head shakiness, and fatigue are the marked symptoms of her flares. Was exposed to strep this time which I theorize why her throat was so bad during 2 of those days.

NEW SYMPTOMS:

Head dropping: Romy’s head drops forward and she catches it and draws it back up. It looks like a person nodding off would. It is very noticable and her neck was very sore from this movement that happened 2 times a minute to 10 times a minute. She did this for 11 days from 3/2 -3/12. This stopped after a minor flare.

Right thigh pain: She’s had this since 3/11, increasing to the whole leg currently.

Lower stomach around to back: This lasted 2 days.

ped LLMD Response:
No med change (continue with Mepron, Zithro, and Nystatin). Romy is making “reasonable progress” but would’ve “liked to see more” at this point.

3/21: Saturday Right thigh a little better but still present. “Regular” Lyme symptoms. Left achilles heels/back of ankle hurt for two days but now gone. Just regular. Had Quinn’s party, boys in FL for spg break.

3/22: Sunday
FLARE DAY - 4pm
Right arm sore, elbow
Disney headache
sore throat, feel mucousy
fatigue/chills
brother was sick Friday/Saturday

3/23 Monday
FLARE DAY, home from school
bloodshot eyes, blue rings around eyes
fatigue
fever
worse with movement
legs worse (thighs)
stone sensation in throat worse

3/24 Tuesday
FLARE DAY, morning, stayed home from school
headache, throat, left/right shoulders, left hip, all over both legs (painful, burning sensation), headache, throat better, back to “regular”.

3/25 Wednesday
FLARE day - but well enough for school
headache, stomach ache, left achilles, both legs

3/26 Thursday
FLARE- but well enough for school
both legs (shins, calves)

3/27 Friday
very warm day
both legs (shins, calves, achilles) still but went to school

3/28 - Saturday
calves, tiny bit of shins

3/29 Sunday
all back to regular but tiny shins. Calves went away.

3/30 Monday
FLARE - went to school
headache, shins, calves, puffy heels, sore throat

3/31 Tuesday
little bit of shins - went to school

4/1 Wednesday

FLARE DAY - home half day
sensitive skins
fatigue, irritability
stomach, chest ache
headache (swings)
NEW Flare symptoms: sore, weak arms. feel loose. Sore soles of feet

4/2 - 4/5; still flaring but much better

4/6 ped LLMD consult

Hi ped LLMD. I was wondering if Romy needs a medication change - additional medicine to support her weakend immune system. Her “regular” chronic pain symptoms are the same from my last summary.

Here’s what’s been going on:

Acutes on top of Lyme
Romy has been worse since the consult. She got a cold/flu bug from her brother and hasn’t quite recovered since. Her Lyme symptoms are worse on top of the acute symptoms (mucous, fever, sore throat).

Returning FLARE symptoms:
fatigue
shins
the “Disney” headache (the worst flare we had in Dec.) Throbbing kind.
sore throat, stone sensation in throat
“puffy” heels (hasn’t happened since sept/oct when she was diagnosed

New symptoms
sore calves
soles of feet
sore/weak arms, “loose” sensation
both thighs

ped LLMD Response: added Plaquinol 4/6

4/6
- Lauren Stone Nutrition/EAV appt: new nutrition/homepathy protocol

Summary of dz strength on a homeopathy scale via the Wavefrontimprinting machine and Avatar EAV machine:

Disease Oct’08 Apr 6th’09 May 4th’09

Borrelia 5c 18x 3x
Bartonella 3c 1c 3x
Babesia 3LM 2M 2c
Strep n/a 3m 1c
Myco. f. n/a n/a 6c

Nutritionist: detoxing heavy metals, allergies, congestion, bone marrow high, bacteria may have been lodged there. Cranial nerves, liver, fat tissue toxicity low.

pedLLMD: Major flare, not an acute during time of regression/croup, etc. Added Plaquinol. Here is an antibiotic summary:

Antibiotic Summary
Amoxicillin 10/6/08: jr. LLMD
Cefdinir/Nystatin/Zithro: 12/15 first LLMD
Cefdinir inc/Nystatin/Zithro/Rifampin: 1/22 first LLMD's p.a.
Mepron, Zithro, Nystatin: 2/24 pedLLMD
Mepron, Zithro, Nystatin: 3/19/09 pedLLMD (phone)
Mepron, Zithro, Nystatin, Plaquinol: pedLLMD 4/6/09 (phone)

4/7
Started new medicine and new nutrition/homeopathy protocol

4/8
Stomach worse
4/9
Passover: headache, head dropping forward tic, both brief - saw two times

4/10
Left hip, fingers all better from afternoon till morning then returned

4/11
Puffy eyes, dark circles

4/12
Headache (3 hours) in morning, left arm worse after lifting

4/13
EVENING FLARE:right armpit, itches, burns. Left knee swollen, skin sensitive, skin itchy. Minor accident - fell down stairs onto face. Nose swollen, frontal head pain, right eye, and neck pain.

4/14
FLARE; note one week after starting Plaquinol
Bad arms, shins, bad legs, hands, sensitive skin, vocalizing tic

4/15
jaw pain, head pain for a half hour
Head nodding forward tic once a day
Hair brushing causes legs to hurt on occasion. Feels like she must sit down.

4/17
IMT eval.
Right pronation IMT.
FLARE: soles and calves after lengthy bike riding
hands: better for a couple hours then returned

4/19
Sunday Spring Break - warm day
FLARE: Heels, achilles, chills after active outside playdate with neighbors

4/20
cold rainy day
FLARE: post ballet. Right heel, throat has stone sensation/sticks, swollen
Left upper back teeth, headache, shins

4/23
regular day

4/24
post IMT headache worse, throat a little better for two hours

4/25
hands a little better for a couple hours

4/26
fingers a little better. Warm day. Got bike

4/27
MORNING FLARE: legs/back. Well enough for school, worse after ballet.

4/28 & 4/29
regular day. Noticed head nodding 2 times a day

4/30
regular day

5/2
left knee, throat worse

5/3
FLARE at night after birthday.
Birthday okay, some allergy symptoms, throat hurt a little
fever/croup episode that night.

5/4
FLARE continues.
Nutrition/EAV appt
metals have cleared up, metabolism looks good. bacterial load less
large and small intestines not good
kidneys way beter
autonomic nervous system is working hard
got latest readings on each ds

5/5
FLARE continues. Chest very mucousy. Sometimes “hard to breathe” but no signs of croup. Worry about pneumonia so I rifed for pneum. myco and for strep.
Home from school day 2.

5/6
FLARE continues. Chest mucousy plus shins, arms, legs, and throat worse.
Home from school day 3.

5/7: shins, heels. chest. Afternoon FLARE - headache, throat, fatigue

5/8: shins, heels, chest

5/9: RECITAL DAY (physically demanding). Tics and fatigue worse by night show. Head forward tic and wide mouth opening.

5/10; congestion, shins

5/11: Morning - legs, especially shins, feet feel “fuzzy”. Went to school all day. After school, tired and tics worse.

5/12: Morning: shins, bottom of feet hurt. Went to school.

5/13: Morning - entire bottom of foot hurts and feels “fuzzy.”
first LLMD appt. Added Septra to see if she needs a cell wall antibiotic added back in. Very stressful appt. BEGAN new meds last night (Septra). Resveratrol, NT Factor and Methyl Project prescribed.

5/14 Thurs: Looking out for rash or any other change. Shins, heels worse. Everything else regular pain symptoms (from Regular Lyme Symptom Chart). Before bed stomach hurt. Baking soda/seltzer drink helped.

5/15 Friday: A tiny bit of skin discoloration. Paleness. Shins and heels worse.

5/16 Sat; Right upper arm and shoulder hurt, shins, left inside of ankle.

5/17 Sun: Both hips, NIGHT FLARE: head dropping forward tic, shins, headache, 4 days after start of new medicine.

5/18:Monday MORNING FLARE: home from school. Shins, arms, chills, headache, nose hurts, hot nose, right arm/shoulder. Homeopathic remedies: Euph helped, Cocc. no. Eddie was sick.

5/19: Tues. FLARE continues. home from school. Sore throat, waist, shins, stomach ache, nose stuffy, tired, hands hurt, wrists hurt, right arm/shoulder. Eddie still sick.

5/20: Wed. Back to school although shins and right arm/shoulder.

5/21: Thurs: bad shins. AFTER SCHOOL shins a little better. Romy noticed while sitting on bus that her ankles, knees, and wrists did not hurt at rest. Once she moves them they continue to hurt like usual (Pat the bus driver made a big turn and they all hurt again). Back and chest feel like “it has a statue in it. Hard to breathe.” Shins got worse towards evening. Romy reports shins always get worse when something else does on her legs. Thighs hurt (front and lateral). Ankles back to hurting all the time, but knees and wrists continue to be pain free at rest.

5/22: shins worse, ankles/wrists/knees continue to be pain free at rest.

5/23: Butt cheeks sore, shins EXTRA worse. Ankles/wrists/knees pain free at rest.

5/24: shins, butt cheeks. Ankles/wrists/knees pain free at rest.

5/25: Shins, right and left arms (all over), right heel, chest/stomach bad at night. Mouth widening tic worse at night. Just wrists and knees pain-free at rest. Ankles hurt because shins and heels do according to Romy.

5/26: Right and left upper arms, shins, right thigh, left and right elbow, right wrist, right index finger. FATIGUE.
5/27: Fatigue, shins

5/28: shins but that is it after day long field trip at Bronx Zoo. Had to rest for 1 hour. Head nodding forward tic, did a few times.

5/29: Head nodding forward tic, feet burning sensation, shins, ankles back to hurting at rest again. Knees and wrists pain free at rest. Stayed home since legs were so sore from walking all day yesterday.

5/30 Shins, head nodding forward tic, knees and ankles still better at rest.

5/31 Shins, knees and ankles better at rest. Before bed right side of neck hurt, stomach hurt (baking soda/seltzer helped) and head nodding forward tic a few times.

6/1 MORNING FLARE: back of head headache, frontal headache that moves around. Shins and heels worse. Knees and wrists pain free at rest. Stomach regular symptoms, shins FINALLY back to regular symptoms, left ring finger and top of hand hurts. ALLERGY: tomatoes and kiwi over last few days - “funny” mouth sensation after eating those items.

6/2 Shins worse again (sat down for gym) stomach worse. Wrists and knees better at rest. Ankles hurt all the time because of “the most powerful symptom, my shins, mom.” Went 12 days with ankles pain free at rest.
Throat a little better.
NEW SYMPTOM: Top of feet hurting . Neck worse all over especially on right side.
FINGERS DON’T HURT AT REST. Major sign of healing since it was a last sx to appear.

6/3 Head nodding forward tic a few times, also HEAD BACK (an old symptom from the fall). Frontal headache in morning. Stomach ache after lunch. Knees and wrists don’t hurt at rest.

6/4 Nutritionist/Homeopath Appt

homeopath reports: CNS increased inflammation, but no stress which is great.
Bacteria and large intestines down, Allergies and toxins high. Ganglia high, Joint high. All targeted work so a good sign her body is working well.

Summary of dz strength on a homeopathy scale via the Wavefront Imprinting
Machine and Avatar EAV machine:

Disease Oct’08 Apr 6th’09 May 4th’09 June 4th’09

Borrelia 5c 18x 3x 3x (no improvement)
Bartonella 3c 1c 3x 1x
Babesia 3LM 2M 2c 4x
Strep n/a 3m 1c 4x
Myco. n/a n/a 6c* 4x
Myco.F. n/a n/a n/a 1c
Mercury 3c
Lead 2c
Aluminum 4x
*error, had previously reported this as Myco. F.

Antibiotic Summary
Amoxicillin 10/6/08: jr. LLMD
Cefdinir/Nystatin/Zithro: 12/15 firstLLMD
Cefdinir inc/Nystatin/Zithro/Rifampin: 1/22 firstLLMD p.a.
Mepron, Zithro, Nystatin: 2/24 pedLLMD
Mepron, Zithro, Nystatin: 3/19/09 pedLLMD (phone)
Mepron, Zithro, Nystatin, Plaquinol: 4/6/09 pedLLMD (phone)
Mepron, Zithro, Nystatin, Plaquinol, Septra: (5/13) LLMD

6/4 Mental symptoms and fatigue worse (irritability, emotional). Head nodding forward tic triggered by towel on head after shower. Knees and wrists continue to be pain free at rest. Shins, left side headache.

6/5 Mental symptoms and fatigue worse (irritability, emotional). Stomach ache after breakfast and after dinner. Definitely working on some die off. Headache after lunch at school and worse all day. Headache moved around. BEFORE BED FLARE: head, shins, heels “too wobbly to walk on” because they hurt too much. Groin hurt. Homeopathic remedy Cocc. helps.

6/6 Sat. Shins worse. Knees and wrists pain free at rest. Impressive after long day of a poolside birthday party and then a BQ, went to bed late.

6/7 Sun. Shins and heels worse. Knees and wrists pain free at rest.

6/8 Mon. Shins worse. Knees and wrists pain free at rest.

6/9 Tues. Shins worse. Knees and wrists pain free at rest. Mental symptoms and fatigue seem improved.

6/10 Wed.

6/11 Thurs

6/12 Friday Phone Consult with Horowitz - kept abx protocol same, added supplements to help with detox.

6/15-6/20: head nodding forward, fatigue. WAS THIS A FLARE BUT JUST MINOR WITH THE TIC AS THE ONLY SX?

6/21: Headache, head nodding forward, back and neck hurt worse. Endurance fully functional, full day plus bike ride up big driveway. Did complain of shins and back worse afterwards.

6/22: started new Horowitz supplements that came in the mail (Chelex, NAC, Alamax). Refuses Cholera, won’t chew.

6/22 to 7/1: 9 days of stabilization. Head nodding still bad when fatigued, doing challenging things. 1st day of dance camp (6/29) was very bad, then suddenly way better. Shins also better, pain-free at rest for 2 days.

7/1: Shins back to “regular” Lyme symptoms

7/2: Emotional/mental and fatigue symptoms almost gone. Almost like the normal Romy of long ago.

7/3: Shins/heels FLARE before bed. Cocculus helped. Head nodding forward worse again. Possible reason off meds for 2 days, ran out.

7/4-7/7: July 4th weekend. Romy stable. Lots of pool time, play dates, late nights. Romy did great. Only after fireworks ended, around 9:30pm did she need to be carried because her shins flared to get back to the car.

7/8: FLARE after dinner, sudden: stomach, throat, headache, shins, fatigue, chills. Aconite 1M helped. Seltzer/baking soda helped stomach.

7/9: Arsenicum the next morning helped stomach. Everything back to “regular”

7/10 - Sunday 7/12: Everything “regular”. Fatigue better.

7/13 SUMMARY FOR LLMD APPT

Current Meds:
Mepron, Zithro, Nystatin, Plaquinol, Septra: (5/13) LLMD

Current LLMD Supplements
Methylprotect
Reservatrin
Chelex
NAC
Alamax

Vitamins
B, Mag, Omegas, Minerals, D3

Homeopathy Drainers/Toners

Globally Romy is better than last month. She seems much more stable with her endurance/fatigue and her irritability/emotional symptoms.

Chronic pain: She had a break in her chronic shin pain - they were pain-free at rest, just like her wrists and knees last month, but only lasted 2 days.

NEW SYMPTOMS: Her new worsening of shin pain went away that was new last month. Her head nodding forward tic was more frequent. We had a 6 day period where it was very noticeable. Wondering if that was a flare?

FLARES: The head nodding forward tic lasted 6 days could have been a flare time. Other than that, she had only two other days (7/3 and 7/8) where she had a minor flare that lasted just those evenings. Homeopathic remedies helped reduce her pain.

7/13 : Romy’s “Regular Lyme: Symptoms Since Fall’08 when she was diagnosed.

All over headache
Neck Pain/stiffness
Back pain
Arm soreness
Leg soreness
Sore throat, stone sensation
Stomach ache
Chest pain
Shin pain (see NEW below)
Heel pain
Ankle pain
Finger pain
Wrist pain (pain-free at rest continues like last month)
Knee pain (pain-free at rest cont. like last month)
Mental symptoms: highly emotional, sensitive, irritable
Sensory integration problems worse
Fatigue
Facial tics (mouth widening, eyes looking up, raising eyebrows)

Occasional
Gums ache (especially after teeth brushing)
Shoulder pain
Right rib pain
Hip pain
Stone sensation in stomach
Other facial tics: Throat clearing tic, sniffing, and vocalizing (rare) upon extreme fatigue. Also a sign that a major flare is coming).
Elbow Pain

NEW: head nodding forward tic more frequent and noticeable. Shin pain back to “regular”, was pain-free at rest for 2 days. Ankles were pain-free at rest again for 2 days. Last month ankles were pain free for 6 days.

-Swimming exacerbates eyebrow raising tic, and makes arms and legs sore.

7/22: Started modified Cowden - Samento/imprinted and Cumanda/imprinted with Parsley totalling 4x a day.

7/23: throat better but not all the way gone sometime this week.

7/28: WBC down, a 3.8

8/2 - 8/3: flare nights (headache, shins, heels, fatigue)

8/14: LLMD Phone Consult: Reduced Mepron to Malarone when we were done with our bottle.

Romy’s “Regular Lyme: Symptoms Since Fall’08 when she was diagnosed. 6 symptoms completely gone. 7 symptoms improved.

All over headache (just frontal, all over is gone)
Neck Pain/stiffness (gone, except that the head nodding tic can exacerbate it)
Back pain (gone)
Arm soreness (a little better)
Leg soreness
Sore throat (gone)
Stomach ache (a little better)
Chest pain (gone)
Shin pain
Heel pain (L gone, R a little better)
Ankle pain (gone)
Finger pain (gone)
Wrist pain (pain-free at rest)
Knee pain (pain-free at rest)
Mental symptoms: highly emotional, sensitive, irritable (better)
Sensory integration problems worse (better)
Fatigue
Facial tics (mouth widening, eyes looking up, raising eyebrows)

Occasional
Gums ache (especially after teeth brushing)
Throat - stone sensation now occasional.
Shoulder pain
Right rib pain
Hip pain
Stone sensation in stomach
Elbow pain
Head nodding forward tic (bad during the monthly cycle)

8/15, 8/16: Chest pain.

8/24 to 8/30: head nodding tic (forward and now backward) bad. WBC still low but up a bit. Great endurance and mood.

8/30: heels hurt end of day. Cocc worked.

8/31: Left calf, L and R thighs. tired.

9/4: R ankle, outside of it.

9/6: stomach, ARS worked. Finished last of Mepron.

9/8: School started. Walked to and from school.

9/10: While waiting on the Malarone issue to pan out, Rifed on Babesia frequencies. Romy’s shoulders felt better, pain gone, during session (10 minutes).

SUMMARY FOR PHONE CONSULT - 9/15

Romy’s “Regular Lyme: Symptoms Since Fall’08 when she was diagnosed.
Purple 8/14 status. 8 symptoms gone. 4 symptoms improved.
Red is 9/10 status. 5 symptoms gone. 1 improved. 1 returning symptom.
Blue: 10/15 status. 0 symptoms gone. 1 symptom improved. 3 symptoms returned on occasion

All over headache (just frontal, all over is gone)
Neck Pain/stiffness (gone, except that the head nodding tic can exacerbate it)
Back pain (gone)
Arm soreness (a little better) (slightly better)
Leg soreness (thighs gone, just calves)
Sore throat (gone)
Stomach ache (a little better)
Chest pain (gone) (came back as a little)
Shin pain (a little better)
Ankle pain (gone)
Finger pain (gone)
Wrist pain (pain-free at rest) (gone)
Knee pain (pain-free at rest)(gone)
Mental symptoms: highly emotional, sensitive, irritable (better)
Sensory integration problems worse (better) (gone)
Fatigue
Facial tics (mouth widening, eyes looking up, raising eyebrows)

Occasional
Gums ache (especially after teeth brushing)
Throat - stone sensation now occasional.
Shoulder pain
Right rib pain (gone)
Hip pain
Stone sensation in stomach
Elbow pain (gone) (returned as occasional)
Heel pain (exacerbated by aerobic activity)
Head nodding forward tic (bad during the monthly cycle)
Calves returned as occasional
Back returned as occasional

Current Meds:
Zithro, Nystatin, Plaquinol, Septra
Change: No Mepron as of 9/6. Waiting to resolve Malarone insurance issue

Current LLMD Supplements
Methylprotect
Reservatrin
Chelex
NAC
Alamax

Modified Cowden
Samento/imprinted
Cumanda/imprinted
with Parsley, totalling 4x a day

Vitamins
B, Mag, Omegas, Minerals, D3
Homeopathy Drainers/Toners

9/18
clicking in throat tic started.

9/24
flare day
top of left foot, shins, stomach, “sensitive” throat that wasn”t a Lyme throat maybe a flu bug.

9/26 Sat
morning; right thigh, left calve, hurts when walking, fine at rest
night; left knee, stomach, headache, shins

9/27 Sun
morning; chest/stomach flare
night; headache, sore throat, chest/stomach again, top of left foot under big toe, fatigue. Belladonna helped head & throat &fatigue

9/29 Tues
right/left butt checks

10/4
right ankle

10/9 Fri
woke up with throat, jaw, jaw tic (opening wide)

10/11 Sun
tired, throat, BAD headache, shins, stomach. cocc no, ars yes

10/12 Mon
before bed headache. belladonna

10/13 Tues
flare day
Morning:headache, slight fever, throat, stomach, fatigue. bella, aconite, gels, bryonia
all better by late afternoon

10/14 Wed
Morning:flare day
headache, shins, arms, throat
better by late afternoon

10/15 Thurs
Morning: stomach, stomach after meals. But went to school. Ars helped.

10/16 Friday, LLMD Summary

Flare count: 4 days home from school. 8 days where there was pain here and there that didn’t last long, but presented more than last month. Did not have a bad week of the head nodding tic like the last 2 months.

Number of symptoms improved: 2
Number of returning symptoms: 3 returned on occasion

Current Meds: (same as September)
Zithro, Nystatin, Plaquinol, Septra, Mepron (couldn’t get Malarone covered)

Current LLMD Supplements
Methylprotect
Reservatrin
Chelex
NAC
Alamax

Modified Cowden
Samento/imprinted
Cumanda/imprinted
with Parsley, totalling 4x a day

Vitamins
B, Mag, Omegas, Minerals, D3, Homeopathic Drainers/Toners

9 CHRONIC SYMPTOMS for October 09 (down from 26 at peak in Dec’08)
frontal headache
arm soreness (slightly better)
stomach pain
chest pain
shin pain
mental sx: sensitive, irritable, emotional
SI problems (gone)
fatigue
head nodding tic and other facial tics
neck soreness from head tics

Occasional
heels, shoulders, elbows, hips, butt, thighs, calves, back, SI problems

For the remainder of the year (November and December'09, refer to Jan. 2010 posts)

Lyme Bill 6200

2009-02-07T09:51:00.000-08:00

ATTN: PHC Members

RE: Public Health Committee: H.B. 6200

My daughter is lying next to me as I write this like she does night after night, her throbbing headaches are so bad they keep her from going to sleep. Recently, my daughter described her headaches: “Mom, it’s like there’s a man with big boots on swinging on a swing. He hits my head (points to her forehead) with the boots, trying to knock me over. The swing goes back, and hits my head again and again Mom. It hurts SO BAD Mom.” Her eyes well up as she looks at mine, dreading the possibility that I may cry again, which always makes her feel worse.

Romy is only 7 years old.

If having Lyme and co-infections isn’t bad enough, our journey helping our daughter has been an outrage. After several weeks on antibiotics with no marked improvement this past fall, we got educated. Why wasn’t Romy all the way better? For a number of reasons I slowly figured out over time.

According to approximately 30 Lyme patients I spoke to directly, Lyme groups and websites, books, and magazines, I soon realized the most VIABLE treatment option for a case like hers at this juncture is long-term antibiotics. Not everyone, but a majority! This is what patients who got better, people like my daughter, were saying. I trust patients over anyone, they have no agenda.

So I went hunting for these doctors that treat tough cases like my daughter’s. The normal route didn’t work, my pediatrician. Where were these doctors I was reading and hearing about? At this point, I didn’t pay attention to the politics, I simply “followed the white rabbit” into this horrible reality where these doctors are scarce, expensive (no insurance), and live 1 1/2 hours away. She misses enough school due to her pain, and a whole day away from school for a doctor’s appointment.

I had to call and call to get in to one Lyme doctor, which took 2 months. Another, the only one that specializes in children, 4 months, which is at the end of this month. Sit and wait as my daughter struggles with 15 pain areas that NEVER cease? Agony.

This was mind boggling to me. How could my daughter’s serious, pervasive disease, be in my hands? For the first time I saw discomfort, perhaps fear, in my primary care doctor’s face. She wanted nothing to do with Lyme or us even though we’ve been patients for almost 10 years. I felt betrayed and angry. I just wanted my daughter to have this viable treatment by the best doctors. I wanted her to have a chance at the ultimate outcome, recovery.

Is this fiction? No. I think about how lucky I am that our family works on one salary, that we are comfortable. What about those other parents out there that aren’t so lucky to be available drive their child to these doctors far away and pay out-of-pocket?

The irony is that I practice Homeopathy, an alternative form of medicine that’s wildly popular outside the United States. I am enrolled in Homeopathy school, but have suspended my studies in order to advocate for my daughter’s treatment and care. My daughter has never been on antibiotics until now, pretty unheard of for most children.

Antibiotics is the last thing I consider when treating my family until now, facing this horrible disease. Even several homeopaths recommended antibiotics after assessing her case.

Why? Why is a homeopathy student like me screaming for antibiotics? Because my daughter is IMPROVING on them, just like everyone told me she would.

I hope you pass this bill so parents like me don’t have to be outsiders, carry a stigma, and spend $800 a month on treatment. It’s really a simple thing to do, let doctors do what they do. What’s complicated is being human, and everyone deserves an individualized treatment plan based on that person.

Thanks for listening.

New Malaria Drug for Kids WSJ article

2009-01-27T08:20:00.000-08:00

I wonder if this new MMV version has been considered for Lyme patients. I'm happy they are finally looking into tayloring these drugs for kids. Yeah, 4 mil, but that's the future. Kids are always last to be considered.

JANUARY 27, 2009, 9:28 A.M. ET
New Child-Friendly Malaria Drug Presents Distribution Challenge
By ROBERT A. GUTH

Novartis AG and a nonprofit partner said they have devised a pill that overcomes a longstanding challenge in developing countries: getting children to take their malaria medicine. The next challenge, however, will be distributing it to those children in the first place.

Cures for malaria are largely designed for adults; the pills are often bitter and too big to swallow for children, who account for most of the more than one million people killed each year by the mosquito-borne disease, malaria experts say.

On Tuesday, the partners will roll out a new children's drug, called Coartem Dispersible, that is small, cherry-flavored and dissolves easily.

The Swiss pharmaceutical giant and Medicines for Malaria Venture, a nonprofit organization focused on malaria drugs, have tested the pill in Africa, trying various flavors including mango, said MMV Chief Executive Chris Hentschel. "The surprise was it was liked by African children who had never tasted cherry," Mr. Hentschel said.

Still, the new pill faces a critical challenge: getting it to the people who need it. In recent years, new investment has poured into creating drugs for afflictions common in developing countries. But efficient channels to distribute the products are rare, giving rise to what health workers call "pile-up" of drugs trying to reach villages and health clinics.

"This is a big step forward," said Richard Feachem, a malaria expert and professor at the University of California, San Francisco. But "there is no silver bullet and there never will be one."

The new pill, which has received regulatory approval in Switzerland and in several African countries, is based on an existing Novartis malaria treatment called Coartem that is designed for adults and is often crushed to better suit children. The drug uses artemisinin, a compound derived from a wormwood plant. The children's version required four years and millions of dollars to develop.

Distribution of Coartem and other drugs is largely done through an international nonprofit fund set up for the purpose of paying for medicines in developing countries.

The fund helps a local government buy the drugs, which are then distributed free through national medical centers and hospitals. Coartem Dispersible will be included in such programs. But the public distribution misses many rural areas, which often aren't reached by national health-care facilities.

"In the end the only drug that matters is the drug that is swallowed," said Novartis Chief Executive Daniel L. Vasella.

Another challenge is lowering the drug's price. Many existing malaria medications have lost their effectiveness as the parasite that causes the disease has built up resistance to the treatments. But they're cheaper than new treatments like Coartem, which on average costs about 80 cents per treatment. And people in countries where the drug is used sometimes mark up the price.

MMV is testing ways of subsidizing small local sellers of the drug in rural areas. In Uganda, it is working with the Clinton Foundation to develop ways of getting drugs to rural retailers at around five cents per treatment.

MMV officials said they also are working with governments to train health workers in local communities to help people manage their health and treatment of diseases like malaria.

Write to Robert A. Guth at rob.guth@wsj.com

Printed in The Wall Street Journal, page A6
Copyright 2008 Dow Jones & Company, Inc. All Rights Reserved

January Doc Appt

2009-01-24T07:40:00.000-08:00

Hi friends. I wanted to give everyone an update about our monthly Lyme specialist appt. yesterday. Overall, the doc thinks Romy is responding to the new med protocol she's been on for one month. She is 5 to 10% better overall, and they are happy she is responding to the meds.

She has Bartonella and Babesia, two of the Lyme coinfections. We couldn't capture these on this latest blood work, but clinically this is what her new diagnoses are in addition to Lyme.

They tinkered with her current meds and added two components, another antibiotic called Rifampin,and added weekly IV treatments of glutathione, an amino acid group key in detoxification. They are increasing Cefidnir and rotating Zithro. Nystatin is the same, and her probiotics have been adjusted.

One of her worst symptoms is her frontal headache, and this is what keeps her from going to sleep at night. Very painful. So they theorize there is toxicity in her brain/nervous system that's not getting out. Lots of dead Lyme. The glutathione will assist in getting rid of the toxins which will then get rid of the headache.

We drew our monthly blood, and at that end they injected her with the glutathione since the needle was already in. Within 20 minutes her headache was 98% better. And this is during a flare (she was having a flare day along with a doctor day). Her headache returned that evening per usual, but a good sign we are on to something. Since the trial dose worked, we are going to do an IV 3 times a week

I wasn't sure at all if she was better or not until this appt because her symptoms are so complex: chronic (better), nightly flares(worse), and a major flare (worse).

CHRONIC: As you guys know Romy has chronic overall body pain in approximately 15 areas. Her hands and her wrists have had intermittent pain relief since we started these new meds. So, 2 out of the 15 areas are getting better. It also fits into Hering's natural law of healing, you trace back by healing the last symptoms to first symptoms. Her hands were the last, and wrists second to last.

NIGHTLY: Romy's nightly flares have been worse. Her headaches have been really bad before bed, sometimes preventing her from going to sleep. She feels overall slightly worse in those 15 areas before bed. Hopefully the IV will improve these.

MAJOR FLARE: These have been way worse (Disney) and now this week. They are longer in duration. Usually it's a couple of days home resting, but this week her flare has lasted 4 days. A couple days longer than the last flare before Disney. They do seem to follow the spirochete life cycle.

Her extensive blood work indicated past exposures to a few bizarre things. Mycoplasma was one of these, and fortunatley it looks as though we've overcome this one. She no longer has strong stomach pains, just her regular low level chronic pain, so it makes sense. Her allergy panel, celiac, strep, epstein barr and a few other things came back negative/normal.

They asked me to assign a made up number to track her overall wellness. I assigned 20% better for last month, and 25% to 30% better for this month, on a scale of 0 to 100%. With increased meds, we hope her wellness rate will improve.

For me, it's been hard not having a consistent schedule, and sad that Romy continues to live in pain day after day. DH and I have been working together to make sure there is home coverage so I can exercise or meet friends, and so he can go to the gym and keep his appointments (the silver lining of having a laid off husband). Since she seems to be home from school around half the time, we need someone home. I've been trying to keep busy and get out of the house every day even though I don't feel like it! This seems to be working, although I did get a major migraine this week which I'm sure is from stress.

Romy continues to be her amazing self. She feels bad for me that "I have so much Lyme work to do". So heartbreaking. I tell her how much I love being her mom, and that the work part isn't bad at all, it's just that it makes me sad she has pain. We try to talk to her and her big brother as much as possible about it. She has so much empathy for everyone. My goal is to keep her from feeling guilty and focus on getting well and being as happy as possible in spite of the pain. Performing makes her happy, so I added her acting class to the schedule and she just loves it. A risk since it does make her very tired, but it's important. They are going to perform "It's a Hard Knock Life" from Annie during her recital.

The Second Hardest Thing About Lyme

2009-01-10T07:28:00.001-08:00

The hardest part about Lyme is the pain. The pain my 7 year old daughter endures is unfathomable. I don't know how she walks around with approximately 20 symptoms that NEVER subside for months. I think she can handle this pain as well as she does because she thinks it's normal. I doubt she remembers what it's like to not feel like this, as she's only 7. Very "here and now" is where her maturity lies, to our advantage.

The second hardest part is that Lyme is an invisible disease. Aside from the minimal paleness of her face and dark circles, no one SEES this pain. If only we could wrap her up from head to toe in gauze. Other than pictures from a microscope from her body, this is what it would take. This day and age people respond to things that are visible. Everything is accessible and viewable online. No need for an imagination.

As a mom, I am my daughter's advocate. Day after day I am explaining what's not visible, details of her pain so she'll be able to take it easy in gym, come home during math because her neck hurts more than usual, that her probiotics are very important to take. As a mom, I need to validate her feelings, her physical pain, that it's indeed real, and I'm here for her and empathize. I need to shout out her condition to the world, to let everyone know that things are NOT fine, that Lyme is a very SERIOUS disease that is still dominating my daughter, still destroying her quality of life. I talk to anyone who will listen, explaining this chronic virulent form of Lyme that's taken away 2nd grade forever.

I have lost two friendships over it already. To them, they can't comprehend what I am telling them. They see my daughter at school walking around, laughing and playing with her friends. It doesn't make any sense. Their own kids have had Lyme - the acute version. They caught it early had were blessed with the golden ticket - the bulls eye rash and super high fevers. They got diagnosed and treated. It went away. For them.

So our situation couldn't be different, could it? I am this California granola mom, emotional type person anyway. Perhaps I've gone off the deep end. Am I looking for attention? I am sure some think I have that psychiatric disorder where I make up illnesses for my kids to get attention. Am I just lazy? Is my daughter making it up for attention? I only wish.

To date, 3 months of antibiotics and no improvement overall. I am at my whit's end.

I am slowly learning that chronic Lyme has a stigma. People rarely talk about it openly to anyone. People are careful and they compartmentalize their life, their pain, their emotions. People deal with things differently, and I can't blame anyone for how they deal with this disease, but I hope people will be brave and share their stories. If I hadn't heard a story, I may be further behind in treatment.

We are stronger in numbers.
There is more support in numbers.
It's not our fault.

The desire to be perfect, to put on the role outside of the home has been passed down generation to generation by moms all over the world. It's also reinforced by society. This is very sad and dangerous reality.

Christmas Vacation Flare

2009-01-06T12:32:00.000-08:00

We were back-and-forth over whether we should fly to CA like we usually do to see family for Christmas. If this is our new life, we can't sit around and not do anything right? Or, is it too risky to tax her system so much? Mentally wellness counts too, as does the feelings and lack of attention that my son has been getting this fall. She seemed to be feeling good, so we decided to go. We took all the precautions, carrying her, putting her in a wheelchair whenever possible so that aerobic activity isn't too lengthy, which can cause a flare. We were all relieved and happy to see family and the trip was like usual. She DID seem a little more fatigued, but had only a couple flares that lasted no more than a couple hours - one from hiking too much around on rocks, maybe the length of time as well.

Because things seemed pretty even keel with her, we decided to go to Disney with my sister and her two kids. My son was thrilled, her boys are close to his age and couldn't wait to go on all the rides with his cousins. Romy was happy with our stroller/carrying plan.

But with all that, Romy had a major flaring of Lyme symptoms that began at Disney that afternoon.

Who knows what caused it?
A cyclical thing?
A culmination of the entire week?
A virus? Everyone had colds after we left.

She was a trouper, still wanting to go on rides even though she was fatigued and feeling worse. We either had her in a stroller or was carrying her the entire time (as planned). But it was pretty exhausting for us parents since we couldn't keep the stroller in line. It was also crowded (yeah it always is).

By the end of the day she was really bad, getting a low fever with chills. She slept during the drive to the hotel. By the time we got to the hotel she was shaking from the chills and had some neuro. symptoms - her head was shaking and nodding and her tics were very pronounced. She started a new tic, small squeaky vocalizations that sound a little like she was humming. Very scary! It didn't help that the elevator was down and we were on the 12th floor. We were also surrounded by very happy tipsy people getting ready for new years. "Yay".

Here I was at a crossroads, holding my 68lb daughter while waiting for the service elevator since the regular ones were out and there was a half hour WAIT in line just to get to our floor. It was too high to walk, plus she can't walk! At that moment I didn't know if I was going to take her to the hospital or put her in bed. What would they do at the ER anyway? She's already diagnosed and on meds. I feared her going into shock, and it was up to me to figure out what to do. What would be less taxing? A busy stressful ER trip? I wasn't sure. Luckily she seemed to get a tiny bit better as we got to the room, so I put off a hospital trip since she stopped shaking. She was in a lot of pain - her head and stomach, so she didn't sleep very much and neither did I. I stayed awake to monitor her, making sure she didn't get worse and need a hospital.

By morning we had to call it, so we decided to be conservative and delay her flying for another day so she could rest. She was much better by morning, walking around, arguing with Eddie, happy, but I was too nervous. Eddie, Burt, and Marcella went ahead as planned.

She rested all day and had no flares on the flight home. I kept her in a wheelchair at the airport and she was relaxed and content on the flight. By the time we got home, 3 of her symptoms were all the way gone - her headache, stomach, and chest. The first relief she had since the week before we left. Her symptoms returned the next morning, but I am hopeful the giant flare was a sign of a big fight and healing. They always say it gets worse before it gets better.

So far she seems a tiny bit better overall on this new regiment - breaks in some of her chronic pain, overall mental symptoms have improved and fatigue seems a little better. We'll see, the CA trip set her body back since it was so exhausting, and Disney was a bad call on our part. Oh well, we can only do the best we can!

I know Romy really had a great time seeing her family that loves her, a much needed mental boost for all of us.

My cancer doctor friend shook my confidence by criticizing us for getting treatment outside of the current guidelines by a "quack" doctor that's not affiliated with a major university/hospital. I then sat up till 2am re-reading all the symptom checklists for every autoimmune disorder. Again, none of them seem to match. I try to remember all the stories I've heard from people who've gotten well by using antibiotics long-term. I keep searching, leaving no stone unturned, but man is it overwhelming. I am so afraid I'll fuck up if I haven't already.

New Protocol

2008-12-22T08:39:00.000-08:00

Romy is on a new protocol as of 12/15- a 3rd generation Cefton, a Zithromax for inside the cells, and Nystatin for the guaranteed yeast infection.

She is also on 3 probiotics and grapefruit seed extract:
Xymogen brand Sacc. Boul.
Metagenics brand Ultra-Flora
Therabiotics brand Theralac (contains 5 human strains plus prebiotics)
Pure brand grapefruit seed extract

12/20/08: woke up with a NEW SYMPTOM foggy vision. Romy described it like having the fog we see outside in the house. She also reported blurry vision. I gave her fresh parsley and after about an hour these flaring symptoms went away.

The flares seem more frequent but her wrists and hands are better during the day. Sometimes all the way better, and sometimes the pain is still there but much less pronounced. The bowels seemed to go through an adjustment, now they seem back to "normal". Hard to know what will happen, how long she'll have to fight this. It's depressing to not know, gives me anxiety. She could be better next week, next year, 10 years. There is no recipe or prognosis. I feel very guilty that I didn't figure this out earlier AND I continue to be angry at the medical community for not accepting the widened criteria and educate patients and parents about all symptoms of Lyme.

When is it chronic Lyme? She's been medicated for 2 1/2 months with a long way to go it seems.

I am totally dreading going to the airport tomorrow. I need to keep her from flaring. Investigated wheelchairs for JFK, hopefully if we need one the airline will call one for us. I didn't want to drag one all over, up and down elevators, etc, unless we have to. She is 68 pounds now, not that easy to carry not to mention luggage. My poor 10 year old son will have his work cut out for him. Could be the best thing for her, surrounded by family over Christmas, or the worst thing ever as it's 12 hours door-to-door.

12/3-12/7 Flare

2008-12-09T08:47:00.000-08:00

Romy definitely felt worse, all of her symptoms. A herx, flare, what have you. I need to document these cycles more carefully. She complained of it being hard to breathe, but seemed minor to her stomach pains. Knives, sticks, pointing out. Her heels really hurt, the left one in particular.

Week of 12/8
Sunday: Better in time to see the Nutcracker with Grandma in the city. All day at school Monday.
Monday: All day at school, ballet. Just chronic all over body pain, what we now call "regular" pain. How sad is that.
Tuesday: Good day so far. Dentist, no hip hop.

Rollercoaster Wednesday

2008-12-06T07:29:00.000-08:00

Romy was feeling very bad Sunday through Wednesday of this week. As the mom, my emotions mirror the wellness of my daughter. I wish I could detach myself but I haven't been able to do it in 10 years.

I was planning on getting my son tested for Lyme on Wednesday. He doesn't have an acute issue, but he too has facial tics and it would be nice to see a CBC and a baseline. I decided to postpone him and use the appt to talk about Romy's increased symptomology as we sit at 2 months on antibiotics.

I cried as I went over her new symptoms, "sand in eyes", sensitive skin, photo sensitivity, overall burning pain, especially in the head and stomach. A sour stomach and the urge to arch her upper back were other new symptoms. We reviewed her overall symptoms that I newly transferred over to the Burrascano/ILADS checklist. She thought that worsening symptoms after 2 months of amox indicates a coinfection. Her IgeneX didn't pick one up, just the borrellia, but that as we know doesn't mean it's not there. The stomach symptoms, so prominent, made her think of a mycoplasma.

We also talked about other specialists non-Lyme specialists that we could see that may have other ideas for testing and ruling out other diseases. She could have Lyme and something else, and it would be nice to have another doctor review her case. Waiting for our LLMD appt (2/24) and trying to score an appt with another LLMD nearby is just agonizing. The only docs in the area that will take children that are not in Camp A. Our new ped suggested we talk to a Rheumatologist, which I would consider, but won't talk about Lyme with them.

I also realized after going back over the EAV testing we did back in October, that she did come up weak for Bartonella. I feel like a total idiot for not noticing it. I doubt it would've changed the choice for antibiotics, but maybe it would have. At any rate, we've been giving her Cats Claw the entire time, so that makes me feel a tiny bit better.

The LLMD said we should draw her blood again to see where we are on amox, and change her meds since there is not only no improvement, but worsening of symptoms. Feeling helpless and completely inadequate I called the LLMD's office AGAIN when I got home. I left a message checking again if there was an opening for my non-responsive daughter, but also asked if he has a referral list. Any specialist at this point is better than no one.

My phone rang about an hour later, and guess what? The spirits have taken pity on us and it was the LLMD's office. Either because they feel sorry for me or they are tired of my calls, I GOT AN APPT. I started crying, and the assistant said "Are you okay?". I said, "I'm just really happy." She asked "Do you want to call back?" I screamed "No!" , apologized for being an idiot, and slapped myself a few times to get it together. There was no way I was hanging up the phone without completing the task. After 8 attempts, I finally squeaked out my complete address so she could mail me the forms. How embarrassing, but here I am groveling at the feet of anyone that can help us. I've turned into this senseless mess.

I immediately asked our LLMD what to do, and she said we should wait the 2 weeks until our appt so we can do a draw then based on what the guru LLMD wants to do. So my LLMD, my ped, and finally specialist, LLMD guru, will have input on testing and treatment. Yeah! Hopefully Romy (and my emotions) can hang in there until then.

So the day started dark but ended with a little ray of light. An apppointment!

Week of 11/17

2008-11-18T06:40:00.001-08:00

So the last two days Romy has noticed her hands are weaker. She can't open the tube of toothpaste like she usually can. Alarmingly, she felt like she couldn't hold her "smoothie" cup (indeed it's heavy, a coffee mug) and asked for a straw. The good news is that she's not scared, she doesn't get the big picture. She had a crappy week last week (11/10), seemed to be a herx week and stayed home a lot - two afternoons I got the call from the nurse, and one full day right off the bat.

To keep a record, I may as well doc the antibiotic timing so far:

10/6: 2x a day on amox, 43 days as of today
10/23: 3x a day on amox, 26 days as of today

Our new ped (ped B) says we really should discount the 10/6 date, and start at 3x a day as the beginning of antibiotic treatment. I heard from a few other Lyme patients that the strength is almost more important than which drug it is. Ped B and my Lyme doc both don't want to increase or change just yet, considering this is still "early".

Lyme Protocol

2008-11-17T07:39:00.001-08:00

So my daughter Romy has had Lyme since the spring. That's what I estimate anyway, beginning of May. Her symptoms began with arm and leg soreness (both, symmetrical) and fatigue. Thinking it was some sort of flu, I covered it usually with Gelsemium, Bryonia, or some other remedy. She'd recover fully.

Both my kids have had facial tics over the last two years, which have turned out to be a P.A.N.D.A.S. like response to the environment. Romy presented with eye blinking at 2 years old, but then it disappeared over time. Our doctor chalked it up to perhaps allergies or some kind of developmental glitch that would eventually sort itself out. These tics slowly have worsened over the summer as did the summery flu-like symptoms. The remedies temporarily ameliorated the symptoms but then slowly stopped working. Thinking it was a block, miasm remedies didn't work either.

Finally, the second week of school, Romy came down with a 101 temp and ALL of her pain back: arm soreness, leg soreness, sore throat, head ache, stomach ache, rib and chest pain. The symptoms would get better during the day and trick me into thinking a remedy was working and that she was getting better. The doctor thought it may be strep or some kind of flu. Knowing next to nothing about Lyme, I asked for a Lyme test, thinking about this now chronic thing she has. This is CT after all! They declined my request for a Lyme test.

Romy was back to normal and even tic free the next week. I thought, hurray! Whatever it was probably lingered all summer and finally manifested and brought the tics out as well. I had a quick taste of freedom, I could work out, study, and pack (we were moving nearby in a month). Slowly, a new symptom NWS emerged: sore chins. Hmm....and again a remedy Cocculus covered it but then stopped working.

And to my horror ALL of Romy's symptoms returned. Good timing, I went to a Lyme disease talk held at a local Holistic Moms group. I started shaking as I read the correct list (broader) of Lyme symptoms. THere were all of Romy's symptoms including tics!

I immediately began testing and treatment with this doctor, and soon learned about Lyme politics - the two camps of Lyme:

Camp A: A narrow criteria (bullseye rash, swollen joints, high fever) and short treatment backed by the CDC, insurance companies, flawed testing instruments that are used diagnostically, and a corrupt Lyme organization IDSA.

Camp B: A broader symptom list, longer more aggressive treatment, the latest and best testing (IGeneX labs) and a Lyme group that supports the thousands of misdiagnosed patients and "atypical" Lyme symptoms which actually ARE typical, the organization ILADS.

See the list to the left for links to these organizations. I've included the latest book, an accounting of the Lyme politics I am referring to as well as the history of Lyme disease, and the movie that also covers these topics and follows several Lyme patients.

We began amoxycillin 10/6 and today she still suffers from ALL her symptoms. It's too early to tell how long she'll have this, so for now I have to feed her gobs of pills to support her immune system and sit tight. It's very difficult as a parent to watch your child in chronic pain. I don't know how she does it. She's gotten "used" to all of these symptoms and now goes about her day at school and takes dance classes two days a week. She has good and bad days, usually afternoons are tough, and right before bed. That's when her symptoms are the worst. Eating makes her stomach hurt, and the antibiotics make her nauseous.

Her immune system protocol contains 10 supplements and 11 homeopathic drops:

Supplements
Immunoglobulins IgG, IgA, IgM, etc (her numbers are way low, suppressed CD 57 Burrascano numbers)
Selenium
N Acetyl Cysteine
Vitamin Bs: Folate, B6, B12, and a B multivitamin
Zinc
Vitamin C - high dosage sugar-free powder
Magnesium - chloride, glycinate, and many other forms including Epsom Salt baths. I give her pills 4 times a day
Aminos: Taurine, 5-hydroxytryptophan, Sun theanine
Probiotics - pills several times a day away from antibiotics
We rotate herbs: Cat's Claw, Echinacea, and Lapacho
Aloe - to support the digestive tract
An endocrine stress blend
Co Q 10
DHLA
Fish oil
Vitamin D (she was deficient already from her CBC, but even more important
Minerals (contains iron, may eventually become anemic, but for now she tests normal)

Homeopathy
We use homeopath for lymph support/drainage, and for endocrine organ support (especially the liver. hypothalmas, gall bladder and kidneys). We also use a homeopathic bacteria blend that contains the Lyme nosode and Romy's Lyme imprint.

I try giving her a constitutional remedy, Carcinosin, when it seems appropriate.

The plan for now is to do antibiotics even after she is better. I am not sure how long until we are there. Post antibiotics I am going to use a Rife machine to "zap" any remaining bugs that are hiding in her tissues/joints away from the antibiotics. There are cell wall deficient forms of Lyme that antibiotics can't kill (they are designed to interfere with cell walls), as well as spores. In theory a Rife protocol will cover these forms. Rife and homeopathic constiutional remedy should hopefully return Romy's health back to normal. We want to get it all so the strong ones that remained don't multiply and return fiercer than ever. I've heard horror stories and I want to avoid that at all costs.

We moved the kids from Ped A that clearly was Lyme illiterate to Ped B. We have a good Lyme specialist that is getting trained by Charles Ray Jones. We have an appt with him in Feb if we still need him. We have our nutritionist/EAV homeopathy person and a homeopath that are helping us with our protocol. All sounds great with the except that Romy is in chronic pain.

My Shit List Du Jour:

1) Ped A's entire office. I wish I were a millionaire so I could make Lyme "care packages" for all of them while I report them to the CT Attorney General's office.

2) Federal and state government for being short-sited scaredy cats that won't do the right thing and study this thing and take chronic Lyme patients seriously.

3) The R.A. and other immune doctors that continue to hold out their stance at the cost of the thousands of seriously ill people.

4) The Visiting Nurse Association: Again, because they are ill informed, they will not take care of the seriously ill people in my town because they are not elderly. They just don't get it.

5) The entire medical community for not coming together for the sake of these patients and the protection of the public. Us parents and patients suffer the cost by reinventing the wheel and having to spend wasted time advocating for our rights.

It's been only two months, so we'll see where this leads us.

Pediatrics Article: Viruses Passed from Parent To Child in DNA

2008-09-03T06:24:00.000-07:00

I can't help but think about miasms. Makes total sense that these diseases are passed to our kids. Homeopaths are still ahead of our time and they lived in the 1800s.

Virus is passed from parent to child in the DNA

By Maggie Fox, Health and Science Editor
Tue Sep 2, 5:39 pm ET
WASHINGTON (Reuters) – A virus that causes a universal childhood infection is often passed from parent to child at birth, not in the blood but in the DNA, U.S. researchers said on Tuesday.
They found that most babies infected with the HHV-6 virus, which causes roseola, had the virus integrated into their chromosomes. Not only that, but either the father or mother also had the virus in the chromosomes, suggesting it was a so-called germline transmission -- passed on in egg or sperm.
"This is really a unique mechanism for congenital infections," said Dr. Caroline Breese Hall, a pediatrician at the University of Rochester Medical Center in New York who led the study published in the journal Pediatrics.
Her team is now investigating what this means for the children.
"If you have a chromosome that has got a virus integrated into it, what does it mean? What does it do? Can it activate again? Can it start spewing out virus and cause problems? Can you get an immune response to it?" she said in a telephone interview.
The questions are critical because nearly everybody is infected with HHV-6. It is a herpes virus that causes roseola -- an infection marked by high fever and the usual vague virus symptoms that may include respiratory or stomach problems.
About 20 percent of children also have a characteristic sudden rash that appears just as the fever breaks.
Hall's team studied 250 infants, 85 with HHV-6. Of them, 43 were born with the virus and 42 were infected later.
Most of the babies born with the virus -- a congenital infection -- had the virus in the chromosome. Hall said the assumption had been that the virus somehow crossed the placenta from mother to child, but in 86 percent of cases, it was inherited directly in the genetic material.
Just 14 percent were infected across the placenta.
Tests showed either the mother or the father -- but not both -- also had HHV-6 in the chromosomes.
"Because we know a parent already had the virus in the chromosome, we know that it didn't spontaneously wiggle its way in once the baby got it," Hall said.
There were several spots where the virus integrated into the DNA, but usually right at the end of the chromosome, where a key structure called the telomere is found. Telomeres protect the chromosome and are involved in aging and immune response.
The virus is everywhere in people who inherit it, Hall said. "In your hair, your nails, your skin, your blood, and at very high titers (levels)," she said.
The babies infected this way did not appear ill but Hall wants to follow them as they grow up to see if they develop normally. They all had antibodies to HHV-6, which is evidence of an immune reaction of some sort.
There is no drug licensed to treat HHV-6 infection.
Other viruses are known to integrate into the DNA and pass on from parent to child, but these so-called human endogenous retroviruses have never been known to cause symptoms or activate an immune response.
(Editing by Will Dunham and Mohammad Zargham)
Copyright © 2008 Reuters Limited.

FDA To Permit Irradiation of Spinach, Lettuce

2008-08-22T07:04:00.000-07:00

FDA to permit irradiation of spinach, lettuce
George Raine, Chronicle Staff Writer
Friday, August 22, 2008

(08-21) 19:36 PDT -- Nearly two years after E. coli bacteria traced to California-grown spinach killed three people and sickened 205, the federal government says it will allow producers of fresh iceberg lettuce and spinach to use irradiation to control food-borne pathogens and extend shelf life.

The Food and Drug Administration is amending the food-additive regulations to provide what it calls the safe use of ionizing radiation for just the two leafy greens. The FDA also has received petitions seeking permission to use irradiation for other lettuces and many other foods.

The government is allowing the practice in the wake of the major E. coli outbreak in 2006 and numerous other problems with food safety and recalls. But this won't be first time such a technique has been used on food. Consumers have eaten irradiated meat for years.

Despite some consumer concern, the FDA says irradiation is safe.

"The agency has determined that this action is of a type that does not individually or cumulatively have a significant effect on the human environment," reads the FDA's final rule, released Thursday and effective today.

xpensive gimmick'

As expected, criticism of the FDA was swift.

Food & Water Watch, a nonprofit consumer rights group that challenges what it calls corporate control and abuse of food and water resources, said that very little testing has been conducted on the safety and wholesomeness of irradiated vegetables. The group also said the action was off target.

"It is unbelievable that the FDA's first action on this issue is to turn to irradiation rather than focus on how to prevent contamination of these crops," said Wenonah Hauter, executive director of Food & Water Watch. "Instead of beefing up its capacity to inspect food facilities or test food for contamination, all the FDA has to offer consumers is an impractical, ineffective and very expensive gimmick like irradiation."

On the industry side, there is little demand for irradiation from California growers and shippers of spinach and iceberg lettuce.

"I think that from a growers' perspective, we have to consider anything that helps us provide safety for consumers, but whether this takes off depends on consumers," said Cathy Enright, vice president for government affairs for Western Growers, which represents growers, packers and shippers of nearly half of the nation's fresh fruits, vegetables and nuts.

"In any marketing decision, we have to look at cost in adapting the technology and consumer acceptance," which will take time to develop, she said.

The petition for the voluntary use of ionizing radiation was filed in 2000 by the Grocery Manufacturers Association. At the time, said Robert Brackett, the group's chief scientist, the grocers wanted permission to use irradiation in the preparation of many foods. However, they amended the petition and asked the government to focus on iceberg lettuce and spinach after the 2006 E. coli outbreak.

The contamination was traced to spinach co-packaged by Dole and Natural Selection Foods in San Juan Bautista (San Benito County). Spinach virtually vanished from grocery stores as demand plummeted.

"That was a big motivation for us," said Brackett, in Washington, D.C.

California producers of leafy greens, in the aftermath of the case of the contaminated spinach, formed a voluntary group called the Leafy Green Marketing Agreement, which developed a food safety protocol for its members - nearly all of the major leafy green producers in California. The approved business practices range from accommodating fieldworker sanitation to preventing animal contamination of leafy green vegetables.

taved off regulation

The marketing effort also kept the producers steps ahead of attempts at government regulation of the industry.

The marketing group, said its chief executive, Scott Horsfall, was surprised by the government rule announced Thursday, saying, "It's not something we have talked about in the year and a half we have had the marketing agreement in place."

He added, "I do not know anyone clamoring for it. There has to be consumer acceptance. We do not know how big a hurdle that might be. The science needs to be looked at and the cost, too."

Others feel it is a step in the right direction.

The grocers' association's Brackett said, "It's more of a safety net. No matter how good a job you do with preventative steps - good practices, proper sanitation - there is still a small chance for contamination. This takes care of those small chances."

eral swine

The California spinach was contaminated by feral swine, an investigation later found. Most of the victims were from Wisconsin and Utah. William Marler, a Seattle lawyer representing victims of food-borne illness, is handling lawsuits for 103 families affected by the outbreak. All the suits except four have been resolved, he said Friday.

Marler said the ionizing radiation tool "gives potential consumers more choice." He said most of the E. coli problems in recent years have been with mass-produced, bagged product, "and those products are ripe for using some kill step like irradiation to make it safer."

Marler, along with the Grocery Manufacturing Association, advocates for national food safety oversight regulation and said this week's FDA rule may prompt more of a discussion about that.

"Everyone would have to play by that rule," said Marler.

© 2008 Hearst Communications Inc.

I completely agree with Wenonah Hauter's comment. Totaly idiotic to put on a bandaid rather than address the problem of how we grow our food. Yet another outcome from the industrialized food system we have.

Researchers Question Wide Use of HPV Vaccines

2008-08-20T14:49:00.000-07:00

New York Times
August 21, 2008
Researchers Question Wide Use of HPV Vaccines

By ELISABETH ROSENTHAL
Two vaccines against cervical cancer are being widely used without sufficient evidence about whether they are worth their high cost or even whether they will effectively stop women from getting the disease, two articles in this week’s New England Journal of Medicine conclude.

Both vaccines target the human papillomavirus, a common sexually transmitted virus that usually causes no symptoms and is cleared by the immune system, but which can in very rare cases become chronic and cause cervical cancer.

The two vaccines, Gardasil by Merck Sharp & Dohme and Cervarix by GlaxoSmithKline, target two strains of the virus that together cause an estimated 70 percent of cervical cancers. Gardasil also prevents infection with two other strains that cause some proportion of genital warts. Both vaccines have become quick best sellers since they were licensed two years ago in the United States and Europe, given to tens of millions of girls and women.

“Despite great expectations and promising results of clinical trials, we still lack sufficient evidence of an effective vaccine against cervical cancer,” Dr. Charlotte J. Haug, editor of The Journal of the Norwegian Medical Association, wrote in an editorial in Thursday’s issue of The New England Journal. “With so many essential questions still unanswered, there is good reason to be cautious.”

In her article, Dr. Haug points out the vaccines have been studied for a relatively short period — both were licensed in 2006 and have been studied in clinical trails for at most six and a half years. Researchers have not yet demonstrated how long the immunity will last, or whether eliminating some strains of cancer-causing virus will decrease the body’s natural immunity to other strains.

More to the point, because cervical cancer develops only after years of chronic infection with HPV, Dr. Haug said there was not yet absolute proof that protection against these two strains of the virus would ultimately reduce rates of cervical cancer — although in theory it should do so.

Dr. Richard Haupt, medical director of Merck, called these concerns “very theoretical,” noting that continuing research and monitoring suggested that immunity would be longlasting and that the vaccine would not lead to problems with other strains.

He added that cervical cancer was “just the tip of the iceberg” and that HPV caused a huge amount of expensive and stressful testing in developed nations that could be avoided with vaccination.

The vaccines, which require three shots for a complete series, cost about $400 to about $1,000, depending on the country and the fees for doctors’ visits. Unlike older vaccines that save money by preventing costly disease, these vaccines cost health systems money.

The second paper published this week, a study by Jane J. Kim and Dr. Sue Goldie of Harvard, looks at the issue of costs and concludes that the vaccines will be cost effective only if used in certain ways. In particular, the researchers say the vaccines will be worth the cost only if they prove to protect girls for a lifetime, and if current methods for screening for cervical cancer using Pap smears can be safely adjusted to reduce costs there. Further research is required in both areas.

“I believe the vaccine is a great advance, but we have to implement it properly to get the benefits, and that hasn’t happened,” said Dr. Philip Davies of the European Cervical Cancer Association.

In developed countries, Pap smear screening and treatment have effectively reduced cervical cancer death rates to very low levels already. There are 3,600 deaths annually from cervical cancer in the United States, 1,000 in France and 400 in Britain.

Cervical cancer, like skin cancer, can generally be caught at precancerous or non-invasive stages and treated. Because the vaccine prevents infection with only some of the cancer-causing strains, Pap smear screening must continue even in those who are vaccinated.

The Harvard study concluded that giving the vaccine to 12-year-olds would cost $43,600 for every “quality adjusted year of life” it saved by preventing a cancer death; that price would often be considered acceptable by health officials in wealthy countries, experts say.

Dr. Haupt said the study proved that it was best to vaccinate early. “It underscores the value of vaccinating pre-adolescent girls,” since the vaccine works fully only in girls who have not been exposed to HPV.

But if the vaccine were given to all girls and women up to age 21, the cost per year of life saved would be far higher — $120,400, the Harvard study concluded. And if the vaccines prove to require a booster shot, as many critics believe, that cost rises to $140,000. In such cases it might make more economic sense to rely on Pap smear screening alone, the researchers said.

Copyright 2008 The New York Times Company

Well there you have it. I'm surprised by how candid they are about the effectiveness, but then again we are talking about money. It always comes down to that, and a cost-benefit analysis like this makes sense to do for ALL vaccines, especially the childhood protocol.

2008-08-15T17:40:00.000-07:00

Proud of my husband!

2008-08-14T15:59:00.000-07:00

Burt just climbed Mt. Rainer in Washington. Enjoy!

2008-08-10T09:40:00.000-07:00

So on my way to LAX I stopped at Santa Monica Homeopathy. It was the greatest place ever! I had never been to a homeopathy store before. I couldn't believe it, all the m.m.s, the literature, all of the remedies, blends, and vitamins. It was incredible! I want to move back to the west coast just so I can shop there.

The kids recognized how exciting this was for me. They were so patient and let me wander with no complaint. How amazing are they! I stocked up on Premier vitamins and some detox stuff. Yeah!

Study Time

2008-07-19T16:47:00.000-07:00

So I've been into the groove of studying. The battle between studying the lessons versus researching remedies for my children's acutes continues. And, the chronic issues they have - facial tics and my daughter's pertussis cough. The main reason I am taking on this training is so I can manage my kid's illnesses. The chicken or the egg? Who knows. Good thing I finally have a homeopath that specializes in children to help me! I am forever grateful for her help and insight, and for her mentorship.

I am finally at peace with daily life versus the course. Structure is key for a person like me, it will help me move forward with my goals. There is so much to understand, and I am not at the point where I can retain and access what I've learned. The database is way too large at this point. I look forward to it all finally making sense, like becoming fluent in a new language.

Currently I am learning all about calc. c., lycopodeum, and sulphur. All polychrests that are very important in homeopathy. They are fascinating and cover so many chronic and acute issues.

I am struggling per usual with traditional homeopathic philosophy. What are these miasms and how can I use them? What about new things? These new diseases and disorders due to the last 20 years of pollution in particular? Are there new miasms? Nosodes are very interesting to me. What about pesticide nosodes(isodes?), lyme nosodes, etc? And my favorite, electromagnetic fields that are growing exponentially in our environment?

Soylent Green The Movie. Something To Think About

2008-05-31T10:47:00.001-07:00

This blog will become my outlet for my frustrations about our food supply and environmental toxins. I'll also be sharing my learning and journey through homeopathy school. Yeah! I am excited about my new passion and look forward to summer and getting into study mode.

But, I have to give a nod to one of my favorite movies (what's not to like about the cheesy acting of Charlton Heston?), Soylent Green from the 70s. It's just fabulous for so many reasons, BUT scary since it was made ages ago and HERE WE ARE TODAY. Heading for Soylent Green.