Chronic Lyme Disease??
 

I keep seeing lyme disease mentioned in conversations. What does lyme disease have to do with MG?

I think maybe some of the medicine used for lyme (both chronic or acute) can trigger MG. It can cause MG to reveal itself.

And another thing; chronic infections may contribute to the existence of auto immune diseases like RA or MG. Not sure id this is proven yet but it just seems logical to me. Having your immune system work overtime for months, even years.

And of course, both have symptoms that arent always clear, and they both can take years to diagnose.

But I don't think there is much else they have to do with eachother, just like a bunch of other diseases that fit the discription above (but i'm no expert and can be wrong of course ;) )

I have seen so many mentions of lyme disease, that I was starting to think that it might be the cause of MG. I have been tested for it more than once. I have never had symptoms of acute lyme disease; however, I have been bitten by a lot of ticks over the years.

Many of the symptoms are similar. I bring it up because I have both diseases and I can't help myself, because I see people posting without a definitive diagnosis that really fit the profile of Chronic Lyme Disease. Also I see people posting symptoms are that very fitting for Chronic Lyme, maybe more so than MG. It is called "The Great Imitator" and is a huge epidemic. It is hard to diagnose, makes you very sick, and has a ton of symptoms.

Also, when you have a bacterial infection for a really long time, you can develop an autoimmune disease. For myself and a surprising number of people I've met in other MG groups, our MG started with years of Chronic Lyme disease. If the Lyme goes undetected and untreated, the MG will never get better. My doctor is certain Chronic Lyme was the cause of my MG. I started to feel better when I went on long term IV antibiotics. I've been on them daily for 14 months.

Thanks Tracy!

I had tick bites, bulls eye rash, negative Lyme test, long term staph aureus, oral antibiotics 12 months total. Travel abroad neuro said, MG - not enough pain and joint dysfunction for Lyme disease...Horrendous myasthenic side effects from my prescribed antibiotics. What was the antibiotic that made you feel better? Just out of interest :)

Anacrusis

I am on Rocephin, 2 grams IV every day. I'm still on it. I am fortunate it does not seem to effect my MG symptoms. I am also on oral Biaxin. I take Rifampin too for Bartonella. One of the most important things about tick bites is you rarely ever get just Lyme; you often get Bartonella, Babesia, Rocky Mountain Spotted Fever and / or Erlichiosis too. I had them all. It's nasty and debilitating. Then after about 5 years I got MG. I 've also gotten hypothyroid, POTS, small fiber neuropathy and adrenal fatigue out of this mess as well.

The tests are totally inaccurate, but if you had a Western Blot and can get a copy, you are better off looking up the results online. Regular doctors don't know how to interpret them correctly.

Goodness! Bartonella rings a bell. Friend of a friend was written off - she was really deteriorating - until she traveled to New York and got diagnosed there. Seems a bit of a contradiction that docs where we live don´t want to give antibiotics for it long term (that means 5 weeks at start of symptoms) yet they leave it too long and they end up having more than they (and you!) bargained for. But that is really interesting that this path led you to MG. Thanks for sharing.............

I have been bitten by many tics (I was a hiker in the northeast and a childhood outdoors all the time).. never thought much of it other than getting the head out and move on with my day.. however my tests come up negative.. All the dr's ask about it, and when I tell them I have had possible exposure, they all just give this blank look like huh? and then don't know what to do..

From what I have researched chronic lyme is poorly understood.. but some Dr's believe that it is an autoimmune reaction chronically and actually IVIG is a treatment for it...


I am terrified of infections like C. Dif... When i got antibiotics I felt AWFUL in the hospital - everytime they hung up the vancomycin I felt like I was gonna kill over - which I hear can happen with lyme.. but I figured it was just how Vanc makes people feel, so didnt' think much of that either..

Celeste, If only they knew all of the bugs that cause disease - or do they? ;)

Ticks not only cause Lyme but other tick borne illnesses as well. Any neurological symptom that is not specific to MG should be thoroughly investigated but it doesn't mean that every MGer has Lyme disease!

bny806, Can you clarify what you just said. Did you have C-Diff? Did they actually give you IV Vanco for that? Because the only treatment is GI/tablet Vancomycin. It has to go into the GI tract, not the blood stream, to kill off the little bugger. When I had C-Diff, I had absolutely no reaction to that drug.

I've never been bitten by a tick. Stay out of the woods! :eek: Although, some people have them in their back yards.

Annie

Sorry Annie- it's been a long day!!

No, I got Vancomycin, rocephin and acyclovir when I had aseptic meningitis in the hospital from the IVIG.. they did an LP on me to look for other things and it was found I had lots of WBCs in my CSF.. they said since it was half poly's and half lymphocytes that they needed to be cautious and treat it with the above meds in case it was in face bacterial... Which we all knew it wasn't ugh! I had them stop after a few days as i was SOOO ill from that vanc.. I kept feeling like I was going to kill over it was really cyclical.. and then realized it was everytime they hung the vanc.. I would throw up and everything.


Thankfully no C. Dif.. that reference was just that any antibiotics scare me as every med is with a risk.. and I already have intestinal issues, so that really scares me.