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.

In the few months I´ve been reading on the forum it´s been interesting to hear about what sometimes presents before MG:

H1N1/other virus
M.E.
Guillain-barré
Lyme disease

I wonder what percentage of patients presented with MG as their´first disease´

(And if the´partner´diseases that usually accompany MG come before/during/after the MG)


Anacrusis

bny, What's to be sorry for? ;) When you have MG, every day is a long day and that might happen even before noon!

The signs of C-Diff are so obvious that you can usually get help soon, so don't be scared of it. Mine went untreated for nearly 3 weeks (long, stupid story) and my ESR was 104 before I got help. BAD ER doctors.

I'm glad you got better on all of those meds. I remember the meningitis but not the drugs you were given.

Annie

That's interesting. it also wasn't my first. I've had hashimoto's (auto immune slow thyroid) for 2 years, doc told me to take more meds, I did and got hyperthyroid. That gave me weird feelings in my throat, gave me weightloss and more. So they decided not to test my thyroid but to take my tonsils out. I got valium for the operation (they said I was anxious, but I wasn't: the hyper thyroid gave me symptoms like high heartrate and stuff).

I'n sure the valium got my MG to wake up. I've never felt normal again, and I took 2 days to get out of the narcosis, which for such a simple operation normally lasts for 2 hours. [and it took another year to figure out it was mg]

Is there someone with mg as their first disease?

I had Graves disease, in and out of remission, for 13 years before the MG popped up. Had a big Graves flare in the spring and treated it with thyroid suppressants. In the fall, my five kids at home came down with H1N1. After taking care of them for two weeks, I had my first noticeable MG symptoms. I never really got the flu, but I had deep body aches for a couple of days--I felt like I was fighting it off.

Abby

It's my first, and so far, only. I did have a baby a year before my symptoms started but that's not really considered a "disease.";)

That may be open for debate.................. :wink:

I hear ya...I'm currently struggling with "Teen Angst Drama and PITA Syndrome" at my house!:p

I take strong probiotics every day to make sure I don't get C Diff from all the antibiotics. It's a dreadful disease and there really isn't a known cure once it's so entrenched in you. Eventually I'll have to go off the IV antibiotics and at that point I'll have to accept I'm probably not going to get any better. As long as I'm on them and making a little progress, I feel like there is a tiny glimmer of hope. They got me from years of being bedridden to being out of bed and able to do a few things. The MG was the final straw for me though in being just incapacitated and is really causing most of my issues now.

My symptoms are mostly MG and Bartonella I think. However I know the Lyme infection still lurks because the IV has cleared up things I didn't even know were Lyme related; my TMJ got better, two frozen shoulders cleared up, severe tailbone pain went away. Just hoping it will still give me more progress.

wow, that's great that your symptoms have gotten so much better Tracy... Did you ever feel sick with the antibiotics (Like I did with the vanc).. I wonder sometimes if i was having a "herx" reaction?? I just thought it was the meds.. but later thought 'huh" .. maybe there was more to it.... I'd do anything to get as close to my old self as possible! :)

I was wondering too if you were having a herx reaction! I got very very sick with antibiotics and herxing for the first several years I was on orals; I've actually been on antibiotics for 8 years. Definitely have had that many, many times. I don't get it as much now. I think my Lyme load is really down now. Thank God! It's taken YEARS of treatment though.

I never thought about that until when I read this thread.. I mean i was ILL - green, and soooooo nauseated and just felt AWFUL.. body ached.. I just thought that was a normal reaction to vancomycin.. as I said earlier, I've had many many tick bites, as I grew up outside and spent most of my 20's outside in new england hiking! What were your lyme symptoms initially? Did you test positive on the standard western blot?? I know they always teach dr's treat primary lime so it doesnt' turn into chronic, which is the "great imitator".. but they don't really teach them HOW to treat it..

Body aches are classic herxing. There are so many symptoms of Lyme Disease, it's ridiculous...but basically pain that moves around, fatigue, brain fog, GI distress, those are some of the top ones. Once it becomes chronic people struggle a lot with headaches and neuro issues, balance problems, vision disturbances, sensitivity to light and sounds, back pain, neuropathy, the list goes on and on.... check out www.lymefriends.org, www.ilads.org, whatislyme.com. Your best bet is to go to a lyme literate doctor who understands and treats chronic lyme. A Western Blot may pick up some bands but it is not reliable and a regular doctor generally won't read it correctly. You can get a list of doctors at www.lymenet.org at Flash Discussions.

Lyme and MG
 

I am so happy to have found this thread. I live in a Lyme hot spot in MASS and have had Lyme at least 7 or more times in 38 years that I've lived here. In the beginning we didn't know what it was up until the eighties, and then we got it treated, at first with 2 weeks of doxy and more recently like last summer I took it for 6 weeks. I'd been so busy all summer, I mean really stressed so busy that I couldn't take time to think about why I was having such a hard time walking up and down my hill between my house and my studio. Finally in August my son said to me Mom, maybe you have Lyme. My test was pos and I took 6 weeks of doxy, but I never felt strong after and looking back I'm thinking I was having a bit of trouble doing stairs, but I'm a pretty heavy woman and in my mid sixties so I thought well I'm fat and getting old, but I've lived a very active and physical life and I was noticing it was weird that repeated trips up and down the hill were taking me "out"... I'd lay down and rest and then after a good rest I'd be fine. Long story short... I was in a foreign counrty for a few months and had time to do research on Lyme. I was thinking I had chronic Lyme but the symptoms don't really match so well. I never have headaches and I feel pretty good, it's just that I get worn our doing stairs and things like climbing hills and I feel fine after rest. Last Feb I started feeling a sensation between my shoulders like blind pimple. Around April it began to feel it spreading more a bit but it would be there some days, like if it was going to rain , but then gone. Later it seemed to be there most every day. I somehow got off track doing my constant research and stumbled on MG and I was flabbergasted when I realized that "this" was what I have. My last eye appt had some tests with flashing lights that I didn't do so well on and my doctor asked me to come back and see her when I got back. When i read online for several hours sometimes everything gets blurry. So I went to my primary Doc and told her what I was thinking and she sent me for the Acetylcholine test and I'm waiting for the result. I know it can be neg and I can still have MG. BUT BUT , now i know that what I suspected could still be true or that there is some kind of connection with Lyme and MG... I'm not crazy on top of it all. I think even if I am MG pos , I'm going to get tested and find out if I have co infections etc... because that gives me hope to read some of what I've read on this thread. Tracy, if you read this please let me know how your doing . Thanks for reading me guys... I am so happy to have read you.

Wondering how your doing
 

I have had Lyme many times in my life. When I first got it in the late 70's we didn't even know what it was, so we didn't treat at that time. I believe I have Chronic Lyme because although I have been treated for it with Doxycyline for 2,4, or 6 weeks depending on the year I got concurrent infections, I now know that that was not enough to kill the cysts and late stage Lyme. I began to develop symptoms of generalized MG about 18 months or more ago. I am older so I thought.. I was just getting old. I decided to research Lyme and discovered MG during my very lengthy research. I recognized the leg weakness that abates after rest. The difficulty climbing stairs or hills but no problem on flat ground. I have had some blurry vision but I wouldn't call it double vision. My mid back muscles started acting weird last winter and for a while it seemed to come and go but now it's almost constantly there and seldom away. I'm wondering how you have done with the Lyme and if you have managed to minimize or eradicate it, and if so has it effected your MG? I am exploring nutrition ways to address MG and just last night I watched and excellent vid by Dr. Deitrich Klinghardt on you tube about Lyme. He is one of the foremost experts on Lyme in the Alternative movement in the entire world.
I hope your making progress!
Best ,
beamer