[nai16]

Hello there,

my name is Natacha, I am 33 years old, and I just found out about this forum so I decided to join it. I was diagnosed with Myasthenia Gravis in 2005 after a few months of occasional, then more regular symptoms which included weakness/muscle failing and fatigue in arms and legs and occasional muscle tingling. I was lucky: my first neurologist realized it was MG after only three visits, as I tested serum positive and responded to Mestinon immediately. I had a thymectomy conducted in early 2006 and my symptoms have been more or less stable (not better or worse than before the thymectomy) ever since. I take Mestinon 3-4x daily. Apart from the symptoms mentioned above, occasionally I get drooping eye lids. And muscle pain or "burn", which is the symptom I would like to ask a question about.

Has anyone here experienced, or heard of a relationship between MG and the so-called leaky gut syndrome? I have always assumed that the pain was part of the myasthenia symptoms, although my neurologist always said that it wasn't a "standard" symptom. At about the same time as my MG appeared, I had my first vaginal thrush, which I treated with creams and didn't ponder any further. At the start of this year, though, I got thrush without taking antibiotics, so after researching Candida albicans, one month ago I commenced strict dietary changes and treatments with natural antifungals & probiotics (following recommendations of a candida forum), also hoping that this might clear my sinuses, which have been blocked for 17 years now! It was in this forum that I first heard of the "leaky gut syndrome", and when I read about the muscle pain description, it sounded extremely familiar! Leaky gut seems to be related to many auto-immune diseases, although I didn't find any specific mention of MG. It would be great to hear your opinion and comments on this matter. I have ordered a leaky gut test kit in the mail, hopefully in a couple of weeks time I will know more about it.

thanks!

[AnnieB3]

Hi, Natacha, and welcome.

First, the gut is basically our immune system. No, it's not quite that simple but you need to keep your GI tract healthy from top to bottom to stay healthy overall. A leaky gut has been proven to lead to autoimmune problems.

My first reaction is that you need to see an allergist. Chronic sinus problems are most often cause by either allergies or fungal issues with foods (or respiratory/environmental causes). They can do basic skin tests or have you keep a food diary to see if some foods cause you problems. If you sneeze after eating a certain food or have an increased amount of mucus, you might either be allergic to the food or have a food sensitivity.

I can almost hear Teresa approaching . . . What she would say is that you might want to get checked for Celiac Disease. I have it and it's very common. That causes all sorts of GI tract damage, not to mention deficiencies, etc.

Muscle pain can be caused by a lot of things. A Vitamin D deficiency is quite common, so if you can ask your primary doctor to test for that it would be a good idea. MG can cause muscle pain if your muscles become too weak and are overused while they are weak.

You need to be on the lookout for other autoimmune diseases, even though your MG is well managed. When was the last time your doctor did basic testing like those mentioned, or thyroid, B12, cortisol, CBC, chem panel, etc.?

The other thing that can cause a leaky gut is either overuse of antacids or not enough stomach acid, whether you use antacids or not. We need stomach acid to keep a healthy balance of good and bad bacteria in our guts.

I hope you will have a conversation with your primary doc about all of this. Doing "doctoring" through the Internet is a tricky thing. You really need someone with experience to do the necessary testing and watch out for drug interactions! Even OTC supplements can be harmful.

Annie

[nai16]

Hi Annie,

thank you very much for your informative response! You are right, there are a lot of tests that I haven't done or haven't done for a long time. One of the reasons for that is that I don't actually have a primary doctor as such, which is a consequence of living in remote parts of Australia and the health system in rural areas being pretty average in this country. Having said that, this is not an excuse not to pursue such important issues, and I am glad you have rattled me awake - I will make an effort to try to find a good doctor (or get hold of the one good doctor I know - the only doctor in a radius of 200km from here - who is very busy, as you can imagine!) and get some tests underway to try to find more answers. I will keep you posted of any news!

Thanks again
Natacha

[AnnieB3]

Natacha, I know, it can be pretty rough in Australia. I've known a couple of MGers from there. But undetected allergies or celiac disease can make your immune system even worse. If you can increase antioxidants, that would help. Do you have organic food where you live?

Be careful, I heard that you guys are in a pretty dry period. I can't believe some of the firestorms that you guys get!

Annie

[Beamer]

I found your thread searching MG and Leaky Gut. I am not yet diagnosed formally with MG but have had the weak legs mostly when doing stairs or hills a symptom that began about 18 months to two years ago. I have blurry vision some times and I've had one Actetychoine test come back neg and awaiting the MuSK test result and appt for EMG muscle test. I have seen my chiropractor to muscle test me for supplements and she suggested I might have leaky gut. I have been looking out how to test for it and thought to search for a connection. I've also suspected that Lyme disease could have created a neuro toxin that would have made my body attack it self. I've seen this theory thrown around in a few places. Anyway how are you managing? Hope your doing well. I participate on a good MG group ( run by Luke Ridgely) on FB as well. There are a lot of knowledgeable people there.
I've been studying a lot of natural approaches to dealing with MG and I'm convinced that it can help.

Originally Posted by nai16

Hi Annie,



thank you very much for your informative response! You are right, there are a lot of tests that I haven't done or haven't done for a long time. One of the reasons for that is that I don't actually have a primary doctor as such, which is a consequence of living in remote parts of Australia and the health system in rural areas being pretty average in this country. Having said that, this is not an excuse not to pursue such important issues, and I am glad you have rattled me awake - I will make an effort to try to find a good doctor (or get hold of the one good doctor I know - the only doctor in a radius of 200km from here - who is very busy, as you can imagine!) and get some tests underway to try to find more answers. I will keep you posted of any news!

Thanks again
Natacha