I could really use some insight on Lyme. I’m in the medical profession and just read one of Horowitz’s books and I’m still so confused about my daughter’s issues.
She’s always had medical issues: benign cyst on her liver, allergic colitis from casein @3months,colic, knee pain that started as soon as she could walk, frequent vomiting, acid reflux @6, migraines @6, and a great deal of random symptoms that come and go.
She was cleared by ortho, GI, ENTs, neuro, and her all the autoimmune tests sent by her pedi were normal.
At the end of May she had a weird fever that would quickly spike to 103 every day at different times for 8 days. Like usual anytime she has a fever she complained of nausea and knee pain, but was otherwise her normal self.
After 4 visits to her pedi and urgent care they ran a CXR, CBC, Lyme screen, and western blot. The X-ray showed a very small area of pneumonia, that wouldn’t really explain her weird fevers and her high WBC, high platelets, but they put her on azithromycin for 7 days. Her Lyme screen was negative. The fever went away after 48 hours.
On June 12th I logged into the patient portal and saw that her western blot was IGM + on 41 and 23 and the IGG was negative (“insufficient bands”).
Her doctor told me that it was a new Lyme infection, but it couldn’t cause pneumonia. Her doctor does not believe that her chronic symptoms were caused by Lyme. She put her on amoxicillin and called it a day basically
From June 14th to June 24th she was on amoxicillin 3x daily. On the 24th she developed terrible itchy hives, joint pain, and a random fever.
Thinking it was an allergic reaction I stopped the amoxicillin and started benedryl q4hours and cortisone cream. Nothing is helping to alleviate her pain and rash. Benedryl, Zyrtec, cortisone, benedryl spray, arnica, Motrin. Nothing is helping.
Is it likely that this could have been chronic Lyme, complicated by pneumonia? Is it likely that only the IGM would be positive?
Has anyone had a similar rash that didn’t respond to antihistamines?
Thank you for reading . . .
(breaking this up for easier reading for many here)
posted
Thank you!
Posts: 23 | From Massachusetts | Registered: Jun 2018
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Brussels
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Golightly, sorry for your daughter... It's hard to see so little children suffering... Mine started having problems at age 2. She's now 14, and all is past, but she also had LOADS of problems.
I'm not good on Westernblots, I'm sure there are other people in the forum who are and I hope they come and tell their views. If you had the whole bands with exact values will be better, I think.
What I know is that I was bitten by an infected tick, 2 weeks later had a bullseye rash, no other symptom, went to the dr and he gave me 2 weeks doxy. The rash disappeared fast, and I thought I was fine. About a month later, I started having joint pains.
It was small, so I didn't bother to think much. Gradually, I started having so many symptoms that I knew something was wrong. So I went back to the dr and he decided to make a Weternblot. It came POSITIVE for lyme.
I told him: so, please treat me. He said he had to send my exame to a lyme specialist, who said I was not ill, but suffering from post lyme disease DESPITE my positive Westernblot.
So no treatment.
In a couple of more weeks, I went so badly downwards, kept looking for answers, visited more drs and hospitals, and got 2 more Westernblots!
The 2nd westernblot came borderline, same laboratory as the first Westernblot.
The 3rd westernblot was done in a different lab, a bit later, and it came NEGATIVE.
The time it came negative, was the moment I was handicapped.
The moment it was POSITIVE, it was my best time, I was still functional.
Conclusion: treat the PERSON, not the exam!!
I had all babesiosis symptoms one could find at that time, the 'lyme doctor' said babesiosis is impossible to have if I had my spleen still, so he never tested me for it.
I had rashes all over my body, that looked like bart rashes.
I could not go out due to sun sensitivity. All my joints felt affected. Bad mood. No more short term memory. Light sensitivity. Tinnitus. Numb arms and legs. Etc etc. No treatment because exams were all negative.
Then my Ferritin level went down to 6, I could not walk, really. Then they treated me for that: and that was all the help I got from conventional MDs.
They never looked at me, at my symptoms, never believed a word I had to say. They only believed the exam that got negative (the positive exam, they said, was just because I had had lyme in the past, not that it was active).
Long story short: I got treated for lyme, and got healed after 4 years of day and night treatment, LOADS of treatments, not through conventional doctors.
Treat your little girl for lyme, with natural treatments, don't wait for her to get a positive exam. She doesn't deserve that.
It doesn't matter if it's chronic or acute. She's got problems that look A LOT LIKE lyme. If something is showing up in the Westernblot, it can mean she had contact with the bacteria, so why wait?
Acute or not, it took my daughter MONTHS to get rid of her first acute lyme. MONTHS.
It doesn't matter if it's fresh or not, treatment may last very long, so I wouldn't really be too fixed on results. I would just look at my little girl and try to help her, with natural treatments if you are not too sure she's got lyme. If she improves, does it really matter if the lyme was acute or chronic?
My opinion.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Thank you, Brussels. I just want some concrete answers to explain all the hell she has been through.
By the time she started having migraines I had already given up on conventional doctors, they have done nothing but make the situation worse.
At the same time I can’t afford a LLMD. The ones that I’ve actually been able to get a hold of charge $800+ for the initial appointment.
Before the hives started she was on amoxicillin, probiotics, GSE, echinacea, vitamin C, and a small dose of serrapeptase. I was trying to be aggressive because I do think she has had Lyme for awhile - definitely hiding in her joints.
Every since she has had hives (day 4, unrelenting) she hasn’t been eating so I can’t give her any of that regimen. I’m at a loss right now. She’s tried benedryl, Zyrtec, Pepcid, arnica, epsom salt baths, sitz baths, oatmeal baths, cortisone cream - nothing is helping her. No one has slept in 4 nights. It’s terrible - no kid should have to deal with this.
What actually worked for you and your daughter?
(breaking this up for easier reading for many here)
Brussels
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Golightly, sorry for your little one. I know how horrible it is.
The exam topic is more for society, so that you can tell THEM you are not crazy only 'thinking' your daughter has lyme.
I would NOT put my energy into getting positive exams, because EVEN if they come positive, if she's in wrong hands, they WON'T TREAT her properly, anyway.
When I realized that, I stopped putting my energy into getting positive exams: they only are useful if used by COMPETENT professionals, not by normal MDs (as they only will give her a couple of weeks of one antibiotic anyway, then give cortison injections and then let her suffer or send her to loads of specialists that again, won't help much).
My daughter got lyme first at 2 years old: tick bite on the head, started with gut symptoms, tummy pains, then joint pains, she had eye symptoms, sound symptoms (tinnitus, maybe?). I had to rely on her descriptions of what was going on inside her.
Joint was clear: sooo painful. She had then loads of food allergies, that created the tummy problems on top of gut infections.
It's a must to do a diet: gluten free, milk free, nut free, and just put all the MAIN ALLERGENIC foods OFF her plate (like raw tomatoes, etc).
Unless you go test her food allergies (but again, which test can you rely on???).
The easiest: just take the 10 most allergenic foods, and cut them off. Then think about tests.
That is already a great start, in my opinion.
Look into the gut: it is screaming for help of all lyme sufferers!!
The right probiotics (must do in ROTATION)-best is FOOD probiotics, enzymes in rotation (best is food enzymes), allergy-free foods AND gut BINDERS (!!!) that is where I will start.
Everyone one profits from these 4 things.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels
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The 2nd thing: neurotoxin binders + detox organ support: think LYMPH system, LIVER, GUT at least.
The lymph is where we ALL have problems, where everything is dumped (heavy metals, pesticides, die off toxins...), I would just add HOMEOPATHIC cleaning substances like Lymphomyosot, Itires and I'm using a wonderful support that helps the liver too called Lymphdiaral, all fully homeopathic, NO SIDE EFFECTS.
Liver support: MORE THAN MUST!! Milk thistle, dandelion, then binders like chlorella, or spirulina + barley grass, or MSM (amazing, if she can take it....), ZEOLITES (of good quality)... I also use homeopathic liver support (like Hepar compositum).
All that must be done daily, probably even more than once a day. No or little side effects!
Brain/ nerve support: Omega 3 clean supplements and MAGNESIUM ( a good biocompatible one, daily, is a must). I use magn citrate or malate, but I'm sure there are other good ones.
If she has joint pain, she would profit from magnesium 'oil' and hot magnesium baths (or epsom salt baths).
3rd thing: I would also try to make a sort of alkaline protocol: cut added sugar, increasing alkaline foods, diminishing acid foods;
.... then adding help (I use homeopathics for that, products such as Sanuvis, Citrokehl, Schussler Salts...), some alcaline salts in empty stomach for a while (not long term), or baking soda (not long term)....
Only then, comes 4th thing immune support + killers.
Echinacea is only good temporarily, not long term, like ginseng for example (they excite too much the immune system, long term they are not good, but temporary use can be good).
Vitamin C: I'm doing a homemade liposomal Vit C that has been AMAZING. I never profited from water soluble Vit C, never really felt any help, except that it caused me tummy ache or loose stools.
I have much less problem with the lipo C, and if I knew about it during lyme, I would have taken it. Easy to do, amazing support. Bought versions do not seem to work as well as home made.
Amoxy served my daughter for nothing: it made her situation worse.
I would do Buhner's herbs, jernigan, or any other natural protocol: MUCH superior than drugs in my non-medical opinion.
Rash can be some food allergy (allergies skyrocket with active lyme), could be also from drug allergy.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels
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I would do EVERYTHING I could to AVOID INCREASING ALLERGIES.
Read about MCAD: most people using long term antibiotics OR fighting lyme long term (even without antibiotics) may end up suffering from a condition that is described as WORSE than lyme itself: MCAD.
I would not desire that to anyone.
Avoid contributing to increase allergies: that is what I would say. That is why for me, long term antibiotics is NOT the way to go. (but that is my opinion).
Amoxy is really NOT useful long term, specially if alone, as it treats none of the main coinfections (that MOST LYME patients have).
Hives could be also: from excess of toxins (lymph is charged).... (just my guess).
Aggressive treatment, in my opinion, works ONLY for the ACUTE lyme: only in the first 1 -2 months.
More than 2 months: I would NEVER use aggressive treatment because of the allergy potential, because it charges the liver / lymph / kidneys even more and DUMP the immune system even more.
Detox and immune system go hand in hand: ignore one, you can't win.
Sorry to be so direct, but I have a daughter, and I'm just writing to you what comes from my heart, more than my brain....
It takes YEARS to acquire experience with what is good or not. Years, literally.
I'm NOT a drug person. I go downwards even with aspirin. I can't tolerate drugs, so I never use drugs. I avoid them, because it seems I get most of the side effects and they bring me nothing.
Natural treatments, homeopathy, herbs, binders: these are the things my body can stand. My daughter also had such a better time WITHOUT drugs. Amoxy made her worse (she took it 5 weeks).
CORTISONE is the LAST THING to do with lyme, unless ABSOLUTELY necessary (bleeding, etc).
It weakens the immune system.
I had loads of sleepless nights, too. Many parents with lyme children go through that, unfortunately.
I'm not a doctor, I'm just a parent that has seen her kid suffering, sometimes horrible suffering.
Stay strong, use both your brain AND INTUITION.
Lyme is a TOXIC DISEASE in my opinion. Toxicity is what makes lyme and coinfections THRIVE. Toxicity is what dumps the immune system.
Borrelia causes herxes not by accident, but because it DEVELOPED this strategy to remain alive and dump the immune system of the host!
Herxes is THE evolutionary TOOL that Borrelia / Babesia etc found to dump the immune system!! (my opinion).
Toxicity will cause allergies (food, mold, rash etc), will cause other dormant infections to wake up (candida, herpes, etc), will make us prone to suffer like AIDS patients, catching all sorts of infections around us...
I'm reading now a book of a German practitioner, and he describes treatment of any chronic disease this way: you need 3 things, simultaneously.
1- detox, binders, take off toxins, support detox organs.
2- correct the pH in the whole body, through food, some supplementation, minerals...
3- fix the gut: clean the diet, correct enzymes, probiotics, parasites..
My daughter took Buhners herbs, Chinese herbs, dr K's tinctures (like Cowden), did the KMT microcurrent, diet, took loads of binders (loads of chlorella + bear garlic daily for years), omega 3, propolis, vit D3, then at the end we did photon therapy with nosodes.
Posts: 6199 | From Brussels | Registered: Oct 2007
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quote:Originally posted by Brussels: I would do EVERYTHING I could to AVOID INCREASING ALLERGIES.
Read about MCAD: most people using long term antibiotics OR fighting lyme long term (even without antibiotics) may end up suffering from a condition that is described as WORSE than lyme itself: MCAD.
I would not desire that to anyone.
- Truth ...!!
I would definitely suspect the amoxy as the cause of the hives. Very dangerous to continue with it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Brussels, thank you so much for your advice! I will be referencing it often
I think my daughter wasn’t able to filter out the dying Lyme from her body and developed a sort of “serum sickness.” After 2 weeks of hives she started a 21 day course of Ceftin.
Her pediatrician was pushing Doxy on her, but from what I’ve read it is no more effective than ceftin or PCNs in children. And it causes permanently yellowed teeth in kids younger than 8.
She finished the Ceftin two weeks ago and hasn’t had any joint pain, fevers, or migraines. But she developed an inguinal hernia from vomiting so much over the years. I’m praying it heals before we see the surgeon - I don’t want to put her through surgery.
I really wish one of the dozen doctors she has seen over the past 7 years actually did their due diligence and diagnosed her properly. It’s infuriating. I’m so thankful to have found this site though . . .
Posts: 23 | From Massachusetts | Registered: Jun 2018
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What an ordeal for a child to go through! You have our sympathies!
Sounds like Lyme to me - knee pain as soon as she could walk, random symptoms, the whole nine yards here -
IgM band 23 is a positive Lyme band. Re the recent fever spike, we can have old and new Lyme, if you know what I mean, as in multiple exposures.
Just reading what you said your daughter was on prior to developing hives, my bet is on the amoxycillin.
Question - what do you mean by GSE? Grape seed extract or grapefruit seed extract? Grape seed extract is a tolerable anti-oxidant. But grapefruit seed extract can cause die-off - it's a strong treatment.
I suggest you contact the Lymelight Foundation here in CA - they give grants to get kids treated!
Posts: 13116 | From San Francisco | Registered: May 2006
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Hi Robin, yes she was on amoxicillin when she developed the hives.
We’ve been taking grapefruit seed extract since she stopped the antibiotics. Do you mean die off from the Lyme dying or from Candida?
It’s kicking my butt, but she seems to be doing well with it. We are also continuing Teasel root extract and usnea extract.
I’m afraid to take her off anything for fear that she’ll get worse.
We have to start the GAPS diet soon, before taking a chance on a LLMD. It’s a gut-healing elimination diet that really helped us in the past, so hopefully the antibiotics + supplements + diet will keep her going in the right direction.
Posts: 23 | From Massachusetts | Registered: Jun 2018
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Brussels
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grapefruit seed extract is strong and it seems to kill candida.
Both candida and borrelia may cause awful herxheimer reactions.
I would never let my child without binders, many times a day because I did the treatment before her, and I know what herxes meant to me.
Don´t expect doctors to treat ANY complex chronic disease properly. It´s hard for everybody - common doctors and lyme specialists as well.
Just keep reading, informing yourself. But think about cleansing and building the gut / body before you think antimicrobials.
If you´d like a happy child, cleansing and building comes before ´killing´, because of neurotoxins.
They clog the liver, lymph, charge the kidneys, create brain fog, bad mood, fatigue, allergies, gut malabsroption, loads of skin symptoms, digestive symptoms, sleep symptoms, hormone imbalance etc...
Gaps may help, if not , shift the diet until something fits her.
what I see is that you are concentrating on killing agents but forgetting your little girl needs to flush the toxins off.
Usnea barbata is EXTREMELY strong, even more than grapefruit seed extract to some people.
If she´s angry, fight and flight mode, think cleansing and binding, not only antimicrobials, or she won´t probably feel good (light, good mood, happy, good sleep etc).
Posts: 6199 | From Brussels | Registered: Oct 2007
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