Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
When I was getting all the endless bloodwork and so on last year, I found out that I have antibodies to the neuromuscular junction. But when I went to take the emg and the sfemg, the neurologist said they couldn't find it on the test so it was just some sort of mystery antibody.
This is actually one of the reasons I think I have Lyme because I also have Sjogren's antibodies but no Sjogrens. So what else causes, like, random antibodies?
Anyway -- I bought some Mestinon from All Day Chemist because even though I had these antibodies and even though I was describing muscle weakness the neurologists would not acknowledge in their exams, I thought it might help with the weirdness I was experiencing every day.
I never tried it because I've been put off by all the Gulf War Illness press, where they say that this was one of the factors considered as a cause.
Does anyone have experience with Mestinon plus abx plus all the general millions of supplements we all take every day? Do you think it's safe, does it help?
Posts: 2057 | From Florida | Registered: Feb 2015
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Jordana - don't know.
You come up with some lu-lu's like I do!
What is Mestinon?
What is neuromuscular blood test you describe?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Jordana
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Member # 45305
posted
Heya --
It's a test for myasthenia gravis. Your body decides to start making antibodies to the place where your nerves and your muscles meet which results in "fatigability."
I'm pretty sure I have it -- the test is diagnostic and it was positive; but I also think I got it from spirochetes messing with my nerves.
Mestinon is a drug that keeps the acetylcholine at the neuromuscular junction from breaking down as fast as it usually does, which gives your muscles more ammunition to fire. If you already have enough working neuromuscular junctions it probably wouldn't do much.
I always feel like my head is too heavy for my pathetically weak neck.
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
So check it out: ( Actually you don't have to read it all) - it seems like Mestinon is immunomodulatory.
They did a study of the immune markers in people who had AIDS when they took Mestinon. That's interesting because we have some things in common with HIV infected people because of the low CD57.
Here we showed that pyridostigmine is able to modify T cell overactivation and proliferation in patients chronically infected with HIV. Pyridostigmine led to an increase in the antiinflammatory cytokine IL-10 and a decrease in T cell proliferation and production of the proinflammatory cytokine IFN-gamma.
Now look at what it says on Wikipedia about the immune dysregulation in Chronic Lyme:
Recent studies in both acute and antibiotic refractory, or chronic, Lyme disease have shown a distinct proinflammatory immune process. This proinflammatory process is a cell-mediated immunity and results in Th1 up-regulation. These studies have shown a significant decrease in cytokine output of (IL-10), an up-regulation of interleukin-6 and interleukin-12 and interferon-gamma and dysregulation in TNF-alpha,` predominantly.
Here, we describe a previously unrecognized, parasympathetic anti-inflammatory pathway by which the brain modulates systemic inflammatory responses to endotoxin. Acetylcholine, the principle vagal neurotransmitter, significantly attenuated the release of cytokines (tumour necrosis factor (TNF), interleukin (IL)-1beta, IL-6 and IL-18), but not the anti-inflammatory cytokine IL-10, in lipopolysaccharide-stimulated human macrophage cultures. Direct electrical stimulation of the peripheral vagus nerve in vivo during lethal endotoxaemia in rats inhibited TNF synthesis in liver, attenuated peak serum TNF amounts, and prevented the development of shock.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
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Member # 47170
posted
Herbs for cytokines?... or ldn ..just got some 1.5 ..? hows the abx going. Auto immune can resolve with tx
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Just thought I'd say hi.. I have a borderline result for MuSK Myasthenia Gravis, and have been taking mestinon for intermittent weakness for the past 3 years with some success. I am just now doing some research on Lyme and what to do about it.. had the EM rash 19 years ago but didn't get tested until 2 yrs ago. Got negative results on both the ELISA and Western Blot/Basic Lyme panel from Igenex.. so not sure where to go now, no admission to Infectious Disease specs with a negatory ELISA here in BC. So looking into NDs, etc.
He recommended taking Huperzine A but no more than 200 mcg) instead of Mestinon, as he said it causes refractory weakness.. although I never noticed that but normally I just have to take it prior/during menses for weakness now. I tried the Huperzine A in a combo formula (SmartGingko) and had a very bad reaction, got weaker than before (am super reactive to all sorts of things-birth control meds, oregano oil, goldenseal, travel vaccines, etc.. not sure if this is herx, or MG??).
Anyway after the reaction to the Huperzine A formula (it contained 400 mcg.. possibly too much) I took 60 mg Mestinon and was okay to walk and sit upright at least! I have the weakness response to so many meds, and I don't think I could tolerate antibiotics, so I'm looking into other options.
I consulted with a homeopath, and she gave me some Nux Vomica to take.. works like a charm! Feeling literally almost like myself, after two days of that! Even felt energetic enough to play with the dog and run a bit!
So now the plan is to take nux vomica if I feel like I'm getting weak. I'm starting on some other homeopathic remedies as well now, with the intention of strengthening my own system's resilience so we'll see how that goes.
I wouldn't want to be without Mestinon but I'd be happier to take a homeopathic. I haven't heard of the concern with mestinon and gulf war syndrome.. gonna google that now!
Good luck! Let me know how it goes, if you take it.. Other things I am doing that generally make me feel better are voiding sugar and carbs, eating lots of veggies. Kundalini Yoga, and taking turmeric when I feel brain foggy and sore.. It's a pretty good natural anti-inflammatory.
Cheers, Gabe
-------------------- "Keep up, and you will be kept up." Y.B. Posts: 25 | From BC | Registered: Mar 2016
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So looking into NDs, etc.
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