This has been such a mystery to me, I hope that someone could help me out with this.
Here is what happened: two months ago in October I had no idea that I had chronic Lyme. Severe fatigue was my main problem (I had had it for many months) and so I was starting to think that I have chronic fatigue syndrome. So I decided to try a herbal supplement which is supposed to help with the fatigue.
These were the ingredients of the supplement: aloe vera, mushroom extracts (shiitake, maitake, cordyceps), tragacanth gum, beta-glucan, arabinogalactan, glucosamine sulfate, ghatti gum, guar gum.
On the 3rd day of the supplement I started having burning sensations all over the body. I freaked out and stopped taking it (I had had some occasional, rather mild burning before but nothing like this). But it didn't stop. And now, after 2 months I STILL have the burning. It seems to be stuck with me now.
Then in November I found out that I have chronic Lyme.
Does anybody have any similar experiences? Did that product somehow stimulate my immune system and lyme bacteria went crazy?! Any ideas? It would be nice to understand this.
Thanks!!
BF
Posted by seibertneurolyme (Member # 6416) on :
This is just a guess. In my opinion the supplement increased your immune response and as a result you killed off enough Lyme bacteria to produce toxins which have not cleared your body.
Lots of discussions regarding whether Lyme actually creates toxins or not, but the dieoff is known to cause a herxheimer reaction -- a worsening of symptoms.
Would suggest lots of B vitamin supplements -- especially b12, b6 and folic acid plus phosphatidylcholine to help with nerve repair.
Bea Seibert
Posted by BartonFink (Member # 10818) on :
Thanks. That has been my guess too.. or actually my doc's who says that the burning is because of the neurotoxins. I've tried B1 (as benfotiamine) and b6 and they seem to help a bit. I will try b12 next week.
Posted by SForsgren (Member # 7686) on :
I agree with Bea. Take some chlorella (lots) or maybe CSM, beta-sitosterol, chitosan, etc. You likely need some binders to get rid of the neurotoxins.
Posted by BartonFink (Member # 10818) on :
I've already been taking n-acetyl-cysteine (NAC) for a month but no help. Maybe I should try that chlorella next then.
Posted by MrG (Member # 10254) on :
Barton...was the supplement in a gelatin capsule?
Pat Sr
Posted by BartonFink (Member # 10818) on :
quote:Originally posted by MrG: Barton...was the supplement in a gelatin capsule?
Pat Sr
No, alfalfa sellulose.
Posted by BartonFink (Member # 10818) on :
Is that important MrG? I have some supplements which have gelatin capsule.
Posted by MrG (Member # 10254) on :
Barton...important...you bet. Gelatin is 40% glutamic acid.
Pat Sr
Posted by Jill E. (Member # 9121) on :
BF,
Burning neuropathy was one of my first symptoms, starting in both feet (I was bitten on the shin) and spreading throughout most of my body. I've had it for four years - not to scare you - but it has only mildly responded to Lyme treatment so we are thinking it might be Bartonella or other coinfection.
But many people have it with Lyme. That being said, I agree with the mushroom immune booster could have put you in some sort of herx.
But please be careful about high doses of N-Acetyl-Cysteine. NAC, at high levels (such as 800 mg/day) can mobilize metals, especially mercury, out of your tissues and into your nervous system and brain.
When I first got burning neuropathy, but didn't know it was Lyme, I upped all the supplements I could find that were written about as improving neuropathy such as B-vitamins, alpha-lipoic acid and NAC. I went to see a nutritionist who showed me an extensive article by the VP of Doctor's Data Lab (they test heavy metals) saying do not use high NAC or alpha-lipoic acid if a person is suspected to be heavy metal toxic.
Many/most people with Lyme have heavy metals issues. So I may have made my situation worse by the supplements, which of course I stopped immediately.
Many people use NAC and alpha-lipoic acid, I would just be careful about dabbling in these, particularly high amounts, until you have a good Lyme regimen under a Lyme practitioner's supervision.
Vitamin B-6 is often written about to help with neuropathy, but it's a fine line - too low or too high a dose can cause it. I've heard some good things about Benfotiamine and plan to try it, although others have said they got no help.
I've had B12 injections but not at high enough doses or for long enough to really help neuropathy.