Topic: Myasthenia Gravis...I've just been diagnosed. Anyone have this? Depressed.
Tracy9
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There, I said it.
I'm pretty depressed about this. It's not a good diagnosis. It's not the end of the world, either, but I can't help but feel my chances for getting better are getting slimmer and slimmer.
My husband says maybe with this diagnosis and treatment I'll be better, maybe it's a good thing.
I told my LLD, who is a neurologist, I'd been having problems with choking. I never would have thought to mention it to him, but someone (I think on here actually) said to tell him. Little did I know it was a symptom of this autoimmune, progressive, incurable neuromuscular disease; my second now, along with the small fiber neuropathy.
It's in the same catagory as ALS and Muscular Dystrophy. And no, it's not one of those things they can mistake Lyme Disease for. There is a very definitive blood test for it, if you have the antibody, it is 100% certain you have the disease. The problem is, like Lyme, lots of people are seronegative and have to have all kinds of other tests or even be clinically diagnosed.
But not me. I tested positive right away. I have the antibody. It explains so many things I'd have never thought to bring up to the doctor; my blurry vision getting so much worse, the choking, why I HATE to talk on the phone or really talk at all, because my talking muscles are so fatigued, why it feels like too much work to even breathe at times, I complain it's hard to breathe, it's exhausting; why I choke on my own spit, even wake up in the night doing it; why last year when I got bronchitis, which I've had a million times, I could not breathe, had to go on Prednisone, never felt that way before, honestly struggled to breathe....
Why my arms and legs are SO weak and I have to rest after just a few minutes of any activity...why sometimes my speech comes out garbled, why I feel like I'm tripping over my tongue.
My muscles are weak, and I think I've had it a long time because it's progressed to all these muscle groups. He wants me to get on treatment ASAP. It means more meds, which hopefully will help strengthen the muscles.
Other treatments are IVIG, which I'm already on, and I can honestly say my choking and vision are getting better with it. I will probably have to wear a CPAP at night and even during the day to give my breathing muscles a rest.
Some people need open heart surgery to get their thymus gland removed. Some end up having "crises" where their respitory status gets bad and they have to go on ventilators for a while. Plasamapheresis is another treatment, steroids, and immunosuppresants.
Some go on the meds and do fine.
I'm worried because it's already affecting me in all the areas. Early on, it's just your vision. I've got it everywhere.
I'm worried because I can look back now and see that over the last year or two or even longer I stopped talking on the phone, started being so short of breath I had to stop talking mid sentence but just assumed it was Babs.
I'm sad because I'll need more drugs and now, IVIG will probably be for life instead of a year or two.
With all we already have to deal with, who the hell wants to get another diagnosis, especially a fairly serious one? So I'm sad. I feel my chances of getting any functioning back just keep getting further and further out of my grasp.
So, does anyone else have MG? And if so, how are you doing? How are you managing it? How long have you had it, what were your symptoms?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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I don't have MG, though one doc did suggest it early on. I did have the choking, however. I had difficulty swallowing too. It was so bad I had trouble eating, and sometimes had to stick my fingers down my throat to pull out food that got stuck. I also had the thing where talking and breathing seemed a great effort, though not nearly as bad as you describe.
In my case, I am pretty sure it was the throat nerves, aggravated or inflamed by TBI's. I, too, am someone that the docs think has a good bit of autoimmune stuff going on.
Thankfully, that cluster of symptoms has not been around in a while. It seemed to improve over time -- time off abx, which, in my case, seemed to exacerbate it.
Herx? -- I don't know.
I wish I could be of more help. But I just wanted to let you know that I had something similar, and it seemed to go away on its own -- at least for now.
I'm sure someone else will come along and have info on MG.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Don't know anything about MG, sorry, but just wanted to add that sometimes, when I have trouble swallowing, I need a chiropractic adjustment - seems to be related to C2 or C4 being out of place.
Posts: 13171 | From San Francisco | Registered: May 2006
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Tracy9
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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17hens
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Tracy, I don't know anything about anything. I just wanted to say that I'm so sorry you have to go thru this and sorry that you're feeling sad right now.
Wish I could do something to help you smile, help you regain hope, help you feel better.
I'll pray.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Lyme patients develop a number of different autoimmune markers, which tend to disappear with successful treatment. I don't know if anyone is keeping track of this, testing afterwards to watch a result go from positive to negative. It should be done, though.
The hitch is that until the treatment for lyme and the cos is successful, that "autoimmunity" can cause damage. And those of us who are chronic will have these markers and the damage.
So, I think you should consider that maybe there is a relationship between lyme and this new diagnosis.
What many of us have is infection-driven autoimmunity.
Posts: 8430 | From Not available | Registered: Oct 2000
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Hubby does have a ptosis (droopy eyelid) so he has been tested for mysasthenia gravis by at least one neurologist. I found a copuple of journal articles regarding lyme and MG -- not exactly sure how to interpret them as I only read the abstracts. Would suggest you have your hospital library obtain the full articles for you to see if they offer any insights.
Abstract In a 29-y-old male with neuroborreliosis, partially responsive to ceftriaxone, myasthenia gravis with acetylcholine-receptor antibodies elevated almost 1000 times the upper reference limit was diagnosed. Pyridostigmine resolved all remaining neurological deficits.
During a 1-y follow-up the patient remained symptom free, despite persistently high acetylcholine-receptor antibodies. They were attributed to epitope homology of the acetylcholine receptors and Borrelia surface antigens.
Role of immunologic cross-reactivity in neurological diseases. Ercolini AM, Miller SD.
Department of Microbiology-Immunology and Interdepartmental Immunobiology Center, Feinberg School of Medicine, Northwestern University, 303 E. Chicago Avenue, Chicago, IL 60611, USA.
Abstract Although the immune system evolved to protect the host from foreign infection, it can sometimes recognize and attack host tissues, a phenomenon known as autoimmunity.
In addition to genetic factors, environmental elements such as viruses and bacteria are thought to play a role in the development of autoimmune diseases.
The major hypothesized mechanism by which infection with these agents can lead to autoimmunity is termed molecular mimicry. Here, immune responses initiated against foreign antigens are cross-reactive with self-antigens.
This is thought to occur especially if the foreign antigen is similar in structure or amino acid sequence to the self-antigen. In this review, we explore evidence for the role of molecular mimicry in neurological diseases.
PMID: 16197809 [PubMed - indexed for MEDLINE]
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Infection and Immunity, August 2007, p. 3842-3847, Vol. 75, No. 8
Copyright � 2007, American Society for Microbiology. All Rights Reserved.
Pathogen Specificity and Autoimmunity Are Distinct Features of Antigen-Driven Immune Responses in Neuroborreliosis
Sandra Kuenzle,1,{dagger} Hans-Christian von B�dingen,1,{dagger} Mirjam Meier,1 Melanie D. Harrer,1 Eduard Urich,2 Burkhard Becher,2 and Norbert Goebels1*
Clinical Neuroimmunology Unit,1 Experimental Neuroimmunology Unit, Department of Neurology, University Hospital Z�rich, Frauenklinikstrasse 26, CH-8091 Z�rich, Switzerland2
Received 16 February 2007/ Returned for modification 6 April 2007/ Accepted 7 May 2007
Neuroborreliosis (NB) is a chronic infectious disease of the central nervous system (CNS) caused by a tick-borne spirochete, Borrelia burgdorferi. In addition to direct effects of the causative infectious agent, additional immunity-mediated mechanisms are thought to play a role in the CNS pathology of NB.
In order to further understand the involvement of humoral immune mechanisms in NB, we dissected the intrathecal antibody responses down to the single-plasma-cell level. Starting with single-cell reverse transcription-PCR of fluorescence-activated cell sorter-sorted cerebrospinal fluid plasma cells from an NB patient, we identified expanded clones and resurrected the antigen specificity of their secreted antibodies through recombinant expression of the correctly paired immunoglobulin heavy- and light-chain genes as monoclonal antibodies (MAbs).
As expected, we found specificity for the causative infectious agent, B. burgdorferi, among the clonally expanded plasma cell (cePC)-derived MAbs. However, from an independent cePC of the same patient, we could derive MAbs specific for human CNS myelin, without detectable cross-reactivity with B. burgdorferi antigens.
While reactivity against B. burgdorferi is a known feature of humoral immune responses in NB, we show (i) that immune responses specific for self antigens may be a distinct feature of CNS infections independent of pathogen reactivity and (ii) that humoral autoimmunity in NB (since found in cePC) is the result of a truly antigen-driven immune response. Our findings indicate that in NB mechanisms may be at play that induce distinct immune responses specific for pathogen and self antigens independent from "molecular mimicry."
Posts: 8430 | From Not available | Registered: Oct 2000
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What Bea posted and I what I posted are two sides of an argument about molecular mimicry; some say our tissues can resemble borrelia in some aspects and that explains why our immune system attacks our own tissues. Others say that molecular mimicry has never been proven. And if intracellular locations protect borrelia, then our immune system is trying to find them when they are hidden inside our cells. Just some explanations for how autoimmunity develops in a person with an infectious disease.
I don't know how long you have been treated, but I don't think you should assume this is a life sentence with the MG. Or at least not yet.
Posts: 8430 | From Not available | Registered: Oct 2000
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I looked up MG in my medical dictionary -- here is one sentence that seems relevant to me.
Quote -- It (MG) is caused by antibodies to the acetylecholine receptor in the neuromuscular junction and a DECREASE IN RECEPTOR SITES FOR ACETYLCHOLINE.
Don't know if you are familiar with the P.K. protocol. The major part of that treatment was the use of IV phosphatidylcholine imported from Switzerland administered with IV glutathione.
Hubby had one appointment with the doc and I was trained to administer the IV's at home. It was an extremely expensive treatment and we were unable to continue it and never even got to the suggested therapeutic dose. But hubby felt the few treatments he did receive were beneficial.
One of the major things the doc believed was that by replacing the good fats in the brain the brain could build additional receptor sites for various neurotransmitters.
I do know that prior to this treatment hubby had one MRI which said he had mild brain atrophy. He has had 3 or 4 more MRI's since then and none of them have had that comment in them.
At the very least I would order the oral Phoschol from the source below. It seems to be the purest on the market. Hubby took this for a year or two after doing the limited IV's that we could afford.
He says it tastes like burnt motor oil -- but you kind of get used to the taste. Hubby took 2 tablespoons of the liquid oil 2 times per day after meals. If I remember correctly one 16 ounce bottle lasted about a month at that dose. But start with a lower dose and work up as it may cause nausea initially.
If I remember correctly I think you have had your gallbladder out -- if so then I would probably suggest taking an ox bile supplement to help with the digestion of the fats. Ox bile is avaialble from Vita Cost.
I think a few people have had some success with using the phoschol to treat neuropathy.
Not sure where P.K. is practicing anymore -- the company listed above would probably have contact info.
One final comment -- I remember reading somewhere that both lyme and babesia deplete people of acetylcholine -- so I think it would be very important to make sure that any babesia coinfection is under control as it could be complicating matters.
Bea Seibert
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I'm so sorry, Tracy. I have every symptom of MG without actually having the disease (though I only had the blood test once, and it can miss sometimes so who knows...)
Having M.E. means my muscles do a similar thing--you only have so much use of them, and you better rest them or else the consequences are severe, anything from not being able to use your arms for a while, to temporary paralysis, to trouble breathing (because of muscles) and a necessity for oxygen machine... I do understand even though I do not have myasthenia gravis. To live every day with that set of symptoms, is terrible, and to know that it will eventually get worse, without any way to tell when it will happen? I'm sorry so much is piling on top of you, that you're going to have to deal with this and I really hope the available medications help you.
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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Tracy9
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Wow, thanks for all the info. I'd like to bring the articles to my Hem/Onc doc at the Cancer Center because he said to me yesterday he has "never seen a patient with as many diagnoses" as me and that "lightning doesn't usually strike the same place this many times." I keep trying to tell him the Lyme causes a lot of these problems after so many years, but he doesn't get Chronic Lyme. He's a good hem/onc doc and he gives me my IVIG and I'm just too tired to really educate him!
17 hens, never underestimate the power of your words. You ALWAYS make me feel better!!!
Little Olive, I think I read about 20% of people are seronegative. I think that's scary if you have all the symptoms because my LLD seems extremely anxious to get me on treatment. Without treatment you really progress. Can't they do the other tests to diagnose you, EMG, I read about other tests and even purely clinical diagnoses.
I guess the good news is I'm already getting IVIG and now that I know some of these symptoms are MG, I can say I've already seen improvement. It sucks to have to take more meds; have yet another freaking incurable disease (though YES there is remission possible for periods of time.)
The scariest treatments besides the steroids are the plasmapheresis and the thymectomy which is MAJOR big time open heart surgery...yikes. I haven't even gotten half the tests on my list done yet and now there will be more.
Oh well. Onward we all go. Thanks for all the feedback, everyone, I guess it is a pretty rare disease (I read 50 people in a million but also that it is very underdiagnosed.)
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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karenl
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Tracy, I had the symptoms and all the bloodwork and it got better and is finally gone. There is a good possibility that you get completely cured.
Make sure you have no mold in your house. I blamed mold for it. Maybe also small parasites could demyelate...just guessing.
Pm me if you need more but no reason to be depressed. I would never take steroids. Good luck and get better soon.
Posts: 1834 | From US | Registered: Oct 2008
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Yes I have had an EMG (negative), but at my next neuro appointment I want to get retested (antibodies) just to be sure. Various diseases can cause similiar symptoms but you're right, it'd be a shame to miss it, wouldn't it? It's admirable that you can still manage to be concerned about other people at this moment!
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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Rumigirl
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Oh, Tracy!!
Good grief, you've been through way too much to have to deal with this now.
Please, please, while you are going through testing, strongly consider what Bea and Lou, etc. were saying. I say, too: TBI's very commonly cause "autoimmunity."
How much of that is really the body attacking the self directly, and how much is the body trying to attack the infection, and attacking the self, because it can't find the pathogens is anybody's guess. But it seems like both are probably happening for many people.
Please, before you do anything drastic, like steroids or a thymectomy, go back to dealing more with the TBI's, try the phospholipid exchange that Bea mentions, and have your LLMD look at your IVIG dosage/schedule to see if it needs to be tweaked in light of this.
I totally agree that it may well be an effect of the TBI's that may improve with all this. By this, I don't mean to say you should forget about seeing what they find and recommend for MG.
BTW, I know of a way to do the phospholipid exchange as an IV at home, and an LLMD who rx's it. Email me if you want the info.
I am sending you prayers and blessings. Please don't give up on the TBI's causing this (in that it could get better with all of the above and whatever else you and your drs can come up with).
Please don't consider that this is necessarily permanent, as someone else said, yet.
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Rumigirl
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Bea and everyone,
I went to a well-known LLMD in '07 who rx'd Phoschol for me in a high dose. Unfortunately, he didn't explain the rationale for it, and it cost $325/month at that dose (from the office anyway), so I only did it for one bottle. (And yes, it sure doesn't taste good!).
But my point is, to get the best effect from it, you could take a much higher dose, at least to the extent that you could afford it. Maybe it would help your hubby more. I could try to find the dosage rx'd, if you want.
Plus, as I said, you could do home IV's of phospholipid exchange with an rx for it. Still not cheap, but it's a thought.
Posts: 3792 | From around | Registered: Mar 2008
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hum, I think this condition is lyme induced, just like MS lupus and whole list of "auto immune" conditions... What is this antibodies test? Here is the contradiction: if there is some specific antibodies to it, that means they have identified the bacteria or virus that causes it right? For example, we have antibodies to lyme, to AIDS, to hepatitis... all those are indentified pathogens.. What about MG? what is the underlying pathogen? I bet no doctor has a clue...that means the "antibodies" test is not something I would trust... So if I were you, I would just stick to my lyme treatment and hopefully you will get better soon!
Posts: 723 | From Montreal | Registered: Oct 2010
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Your body creates antibodies for outside intruders, i.e., infections: Lyme, HIV, hepatitis, just as you said. Those are the antibodies you measure against something from the outside that is attacking you.
Autoimmune conditions occur when the body starts creating antibodies against ITSELF, not an outside source.
Myasthenia gravis is not an infection.
Lyme disease can mimick autoimmune conditions like MS, and Lupus, and RA, but the person doesn't actually have those conditions, they don't actually have the antibodies that are attacking the body. It's just a case of misdiagnosis.
MG is caused by the body creating antibodies NOT against an outside source, but against its own chemical receptors.
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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lpkayak
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couldn't read everything but the bushes(elders) both had it and they spent time in kennebunkport maine---very endemic and i always thought it was undiagnosed lyme
i would not be so quick to say it is is not lyme or coinfections
docs tell you stuff is true and they really don't know what they are talking about
i had all those sx and most are better with buhner tea after a year...i get more better as i strengthen the dose
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Lyme cannot create false antibodies to your acetylcholine receptors.
The tests for MG are not like other conditions where it is based on symptoms, signs, and general tests such as ANA, and ESR. Things like multiple sclerosis and RA don't have definitive blood tests; myasthenia gravis, does. If you have the positive antibodies, there is no question. Some cases of MG are diagnosed without the tests, but if you HAVE the positive test, it's there.
That said, sure continuing to fight the Lyme and reduce the inflammation from that will help the MG, but Lyme disease does not equal myasthenia gravis.
I'm just trying to get the right information out there. The symptoms are very similar, which is why her doctor tested for it, but if the tests are positive, the tests are positive, and I feel people are confused about what that really means. There isn't an "it might not be MG" anymore, which is why it was so hard for Tracy to make this post.
I know everyone is trying to be helpful and give out a sense of hope and "it's not the end" but I think we need to also be realistic about what we're dealing with. You can't fight what you don't acknowledge, and as brave as it was for Tracy to acknowledge she has MG, I think it's detrimental to blurt out "but you might not actually have it" when the tests--the definitive tests--show it is there.
I hope my intentions come across clear, I'm honestly not trying to "start something" or anything of the sort. Just trying to clarify what the situation is and I hope my foggy brain isn't getting in the way.
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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Tammy N.
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I don't have words of wisdom on this topic. Just wanted to reach out to let you know we care about you. I am sorry for you. Sorry that you have to deal with yet another thing.
I'm a big believer that once you can get Lyme and cos in remission, auto immune issues also disappear/diminish. I've heard it over and over many times. Don't let go of this hope. Tell yourself 'This will be me!"
Suggestion -- I would read everything I could get my hands on about Dr. K and all of his teachings. He is one of the best doctors out there. He deals with healing on many different levels. I don't think I (or most of us) can be cured just treating from a medical standpoint. I think we need to come at our complex issues from many different directions.
Dr. K also educates other doctors, so you can perhaps find someone on his referral list near you.
Wishing you all the best, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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I just wanted to let you know that I am so sorry you are dealing with this among all the other issues you and your family are going through. I read some of your other post.
I truly admire your stength and God will help you get through this. Sounds like you are in good hands.
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lpkayak
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olive-i hear what you are saying...and it is important-however i stand by what i said. i am not telling anyone to treat or not treat mg or anything else. i encourage ppl all the time to be sure to treat other problems that are treatable.
docs often say "you don't have lyme cuz your TEST is negative." i know the lab sheet says it is neg so the doc is not lying...they are just ignorent-if you understand the lyme test issues you understand this."
also...as info comes out it is looking more and more like lyme is not lyme...or Bb...it is a MULTISYSTEMIC-MULTIPATHOGEN condition...they are starting to come up with new names for it...
and the combo of these pathogens plus your individual history plus your individual genes determines what happens when you are exposed to the pathogens
i'm nobody. just a leftover hippie (who didn't inhale-really) and a long term chronic lymie(27 years at least) but i have followed the emergence of so called "lyme" and watched research come out and watched docs and scientists and patients suffer and die and if you take this info in over time you learn not much is as it seems.
facts are not facts.
the test you refer to may say she has what she has and someone may have decided to call that mg...but where did it come from...does the tx really cure it?
so many docs dx us with lymphoma and give us a death sentence from lumps that are bart and respond to chinese herbs.
i understand there are times when living this life with lyme is overwhelming and we have to do what the doc says...and that is fine if tracy decides to so that. i'm not saying she shouldn't...i'm just saying when it comes to health and docs they often don't know what they are talking about but they present it to you as the truth
if you know me you know in the last 3 months i lost my ability to walk because after 3 yrs i gave in to the docs telling me to take lipitor. all my heart and lipid tests were neg but because my dad died of a heart attack and i am fat they pushed for me to be on it. 10 mg. small dose-they wanted me on 80. 6 months later i get unexplained pain in my legs and within 2 months can't walk. tons of test.s.. tons of radiation. no answers. i google the sx and find out it is lipitor poisoning. i don't take my daily pill that night and walk in the morning.
all i am saying is when it comes to medical stuff...esp long term chronic...the docs don't know.
strep is strep. 10 days low dose abx gets rid of it-sort of-makes it able to live with anyway.
but i think ppl need to think twice about a doc that says they have these long term chronic mysterious conditions and make sure the tx is not going to hurt them more than the disease
i know tracy from the rally in westchester. i have followed her story and it is hard to believe someone has had to go thru so much. i am only giving my opinion based on my experience.
my advice tracy is to be open to everything...research as much as you can...and then pray...ask what to do...and listen for the for the answer. cuz noone here on earth knows what is really going on with all these diseases/conditions. any good llmd will tell you that.
admins---feel free to delete this if it is offensive...i just think it is an important idea for all to consider.(i'm moving and may not be online much)
tracy..take care. i am so sorry for all your troubles.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak, I'm with you. Need to put you up in front of a class of med school students and current docs. They know how many holes there are in current practice and theory but patients expect an answer, rightly or wrongly and don't want to live with uncertainty. Seems like many people prefer a wrong diagnosis to "we don't know." So, docs just pull something out of the hat for them.
Posts: 8430 | From Not available | Registered: Oct 2000
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sixgoofykids
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Tracy, I know your diagnosis is more serious than the fibro and CFS this article discusses, but the cytokine information in this article is helpful. It talks about how cytokines stimulate the immune system even more causing autoimmune conditions. http://www.prohealth.com/library/showarticle.cfm?id=3748&t=CFIDS_FM
I found this to be true in my case. I was constantly trying to reduce the inflammatory cytokine response. Even my LLMD thought my reaction to some drugs and supps indicated excessive cytokines.
Whey protein and turmeric were two of the things I used. I could never use things like transfer factor or elderberry (for the flu) because I already had an excessive immune response. Even now, when I catch something, I try to calm the immune response with turmeric (a miracle herb, IMO).
At one point I tested as having an autoimmune response to gluten (but not celiac). I have no trouble with gluten any longer.
All the treatments you mentioned seem to calm down the immune response. They REAL key will be to find out what's causing the over-active immune response to begin with.
I'm not one of those who thinks borrelia and coinfections are the end all for all diagnoses even in a Lyme patient. But the borrelia does hide out and cause this type of reaction. It must be dealt with.
So must parasites. Major, major, major, IMO.
Some have viruses. I was not one of those ..... you seem more like me than the people who have viral issues.
KPU and mold exposure were HUGE for me.
You might look into "tapping", it's good for the emotional component. Even the CDC admits almost all chronic disease has an emotional component .... I'm referring to emotions as one of the contributors, not our emotions we deal with because we're sick. This was/is another big piece of the puzzle for me. Bad emotions inhibit necessary energy flow in the body.
We have all these pathogens hiding out in our bodies and our immune systems are confused. The beauty of photon treatment is that you can go after the pathogens in a way that builds up and strengthens your body. Also, once you start using blood as the nosode, you start going after the pathogens you don't even know about. I, personally, could hold back my symptoms with abx significantly (not completely), but they didn't seem to make me better (they do work for some, we're all different). Maybe this is something to look into. The PE1 is about $1000.
So, use the doctor's plan to keep the immune response to a minimum, but go after the source of the cytokines that might be causing this immune response to begin with. I wish I were 20 years younger .... I'd go to medical school .... I really think this is the key to autoimmune problems, I just don't have the education to study it. This is the paradigm that I used to get completely better - calming cytokine response while treating the underlying cause of it.
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Bugg
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Hug to you, Tracy
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lpkayak
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thanks lou. sometimes i think all they teach new docs now is how to use a palm pilot. they type in sx and it spits out a tx that makes the drug and insurance companies happy and covers the docs butt and we deal with side effects mixed in with the original illness and it goes on and on.
why can't they teach these docs to think? our good llmds have been forced to think often cuz a loved one or themselves are not responding to what the palm pilot says.
heres to better medical care in the future...somehow.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Tracy, I'm so sorry you are dealing with this diagnosis. I know a little about MG, because I have always thought my aunt had undiagnosed MG. There's a yahoo group for MG, and I have seen them post about lyme being a co-factor in MG. There can be so many overlapping symptoms.
Sixgoofy, Can you please elaborate on the cytokines stimulating the immune system. How do you know that your system is overactive? How can we determine what is overactive, and what is underactive?
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Tracy9
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Thank you everyone, for all your input!
Little Olive, thanks so much for explaining it. MG is a definitive diagnosis. I will cut and paste and explain why. It's like doing a biopsy or cutting out a tumor, there it is. There is no question. It actually explains SO much of what I have been dealing with and could not explain over the last three years; it's unreal. Now EVERYTHING makes sense. Truly. It all fits together like a puzzle. Unfortunately I would say I am a fairly advanced case, but I am grateful to my LLD, who is a neurologist, for recognizing my symptoms and diagnosing me now with two fairly rare neurological conditions I would NEVER have known I had.
Small Fiber Neuropathy was diagnosed by a biopsy; definitive. MG was diagnosed by an antibody test. There is no such thing as a false positive. With both of these tests, like Lyme, more often people struggle to try and GET a positive and they can't; with me I was positive on both the first try.
It's not a good diagnosis. Both diseases are incurable. But with MG you can go into remission. It can be life threatening. The treatments suck. But there is no doubt it completely explains just about EVERYTHING I've struggled with and why I'm bedridden the last three years, why in six years with all the Lyme and co treatment I've had, I've never gotten better, but only worse, and worse, and worse.
I do believe both these diseases were caused by Lyme. SFN is clearly known to be caused by Lyme and Bart. MG is known to be caused by bacterial infections.
I had Dr. W fax me my results so I could see them for myself. I tested in the highest range of positive for the antibody. It sucks. I can only hope the treatment works for me. I'm already on IVIG and now, in retrospect, it has really helped. It explains why I kept going in and telling him how it was helping with all these wierd things that had nothing to do with SFN, like how I could move and bend my fingers again. That's a classic MG thing; my fingers had gotten so weak I couldnt' bend them anymore very well. After my first round of IVIG I could effortlessly bend my fingers. But that has nothing to do with my nerve fibers!
My choking has gotten better with the IVIG (the reason he did the test to begin with.) In fact it sure is helping with the MG a lot more than with the SFN.
I've researched endlessly and it appears almost everyone goes on the drug Mestonin, which seems to help a lot. But I will post some of what I found here. I really appreciate that everyone cares. And yes, Little Olive, you really hit the nail right on the head.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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What is Myasthenia Gravis? Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. Symptoms vary in type and intensity. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Muscles that control eye and eyelid movements, facial expression, chewing, talking, and swallowing are often, but not always, involved. The muscles that control breathing and neck and limb movements may also be affected. Myasthenia gravis is caused by a defect in the transmission of nerve impulses to muscles. Normally when impulses travel down the nerve, the nerve endings release a neurotransmitter substance called acetylcholine. In myasthenia gravis, antibodies produced by the body's own immune system block, alter, or destroy the receptors for acetylcholine. The first noticeable symptoms of myasthenia gravis may be weakness of the eye muscles, difficulty in swallowing, or slurred speech. Myasthenia gravis is an autoimmune disease because the immune system--which normally protects the body from foreign organisms--mistakenly attacks itself.. It is not directly inherited nor is it contagious.
Is there any treatment?
Myasthenia gravis can be controlled. Some medications improve neuromuscular transmission and increase muscle strength, and some suppress the production of abnormal antibodies. These medications must be used with careful medical follow up because they may cause major side effects. Thymectomy, the surgical removal of the thymus gland (which often is abnormal in those with myasthenia gravis), improves symptoms in certain individuals Other therapies include plasmapheresis, a procedure in which abnormal antibodies are removed from the blood, and high-dose intravenous immune globulin, which temporarily modifies the immune system and provides the body with normal antibodies from donated blood.
What is the prognosis?
With treatment, most individuals with myasthenia can significantly improve their muscle weakness. Some case of myasthenia gravis may go into remission temporarily, and muscle weakness may disappear so that medications can be discontinued. In a few cases, the severe weakness of myasthenia gravis may cause respiratory failure, which requires immediate emergency medical care.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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About MG
In most cases of MG, which is part of a large class of diseases known as "autoimmune," or "self-immune," disorders, the immune system mistakenly attacks the acetylcholine receptors (AChRs), destroying them faster than the body can replace them.
The result is that the nervous-system chemical acetylcholine, which normally lands on these receptors as the first step in transmitting nerve signals, often fails to do so. Signal failure causes fluctuating weakness in patients.
Current treatments for MG include suppression of the immune system, direct removal of immune-system proteins called antibodies, and enhancing the transmission of acetylcholine signaling with a medication that slows acetylcholine breakdown. These treatments can usually control the disease, but they often have unwanted side effects and don't always work as well as desired.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Diagnosis If a person has symptoms that suggest he might have myasthenia gravis, there are tests that can be done to confirm it. The most specific test is to check the blood for the presence of abnormal antibodies using the acetylcholine receptor antibody test. Presence of the antibodies confirms the diagnosis.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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"Myasthenia gravis is characterised by fluctuating weakness and muscles that tire easily. An acute increase in symptoms can be life-threatening because of swallowing difficulties or respiratory failure. Myasth...enia gravis is an autoimmune disorder in which the body's own antibodies block the transmission of nerve impulses to muscles and damage the neuromuscular junction (where the nerve meets the muscle). With optimal treatment, including thymectomy, (open heart surgery to remove the thymus), corticosteroids, immunosuppressive drugs and plasma exchange, most people with myasthenia gravis go into remission or improve but these treatments can cause many adverse events."
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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The progress of the disease is variable, with periods of remission followed by exacerbations. In about 85 percent of cases, the weakness will progress to a generalized weakness that affects large muscle groups.
At some point in the illness (...usually within two to three years after diagnosis), 12 percent to 16 percent of myasthenia gravis patients will experience a crisis episode, in which the weakness becomes so severe that breathing is compromised and respiratory assistance is required (Berrouschot J et al 1997; Cohen MS et al 1981). This eventuality is most likely in people who also have a tongue and mouth weakness.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Conventional treatments used in myasthenia gravis take five forms (Drachman DB 1994):
Acetylcholinesterase inhibitors. These drugs work by blocking the enzyme that normally destroys acetylcholine in the synapse, which allows the existing ace...tylcholine more time to interact with the available receptors. The result is stronger and more complete muscle contractions. Excessive use of antiacetylcholinesterase drugs can have fatal side effects. The most commonly used acetylcholinesterase inhibitors in myasthenia gravis are pyridostigmine and neostigmine.
Thymectomy. Dozens of studies support the use of thymectomy, or surgical removal of the thymus gland, to treat myasthenia gravis patients (Roberts PF et al 2001). There is some debate, however, over how effective the procedure is among patients who do not have a thymoma: one review suggested an absence of any benefit from thymectomy in myasthenia gravis patients who lacked a thymoma (Gronseth GS et al 2000). Other reports suggest that the procedure is especially valuable in early-onset myasthenia gravis (Onodera H 2005). Following a thymectomy, patients often report that symptoms lessen and, in some cases, disappear completely.
Immunosuppressants. Immunosuppressants are often used in myasthenia gravis to blunt the overactive immune response. These drugs might include glucocorticoids such as prednisone, azathioprine, cyclosporine, and others. Although they are effective in many patients, careful management of patients on long-term glucocorticoid therapy is crucial because of the significant side effects associated with these drugs. Glucocorticoid use over the long term is associated with significant metabolic side effects, including central obesity, impairment in insulin sensitivity, and bone loss.
Plasmapheresis. Plasmapheresis separates plasma, which contains the autoantibodies, from red blood cells, which are then returned to the body. This treatment improves symptoms temporarily and is especially valuable in preparation for surgical removal of the thymus. Several studies have reported that plasmapheresis is tolerated well in patients. The most common side effects are reversible hypotension (low blood pressure) and mild tremor. Several studies indicate that infection and mortality rates due to plasmapheresis were negligible, and all patients had immediate benefit from the procedure (Carandina-Maffeis R et al 2004; Chiu HC et al 2000).
Intravenous immunoglobulin. High-dose intravenous human immunoglobulin (IVIg) has emerged as a therapy for various neurologic diseases, including myasthenia gravis. Rather than expunging abnormal antibodies from the blood, the procedure floods the body with gamma globulin antibodies from several donors. In controlled clinical trials, IVIg was effective in treating chronic inflammatory demyelinating polyneuropathy (van Doorn PA et al 1990). IVIg has also produced improvement in some patients with myasthenia gravis (Ronager J et al 2001; Wegner B et al 2002). IVIg therapy generates temporary relief lasting weeks to months. Studies that compared plasmapheresis and IVIg found that although both treatments demonstrated a clinically significant effect in patients with chronic myasthenia gravis, the improvement had a more rapid onset after plasmapheresis than after IVIg (Ronager J et al 2001).
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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A Myasthenia Gravis crisis involves several breathing difficulties (shortness of breath) due to muscle weakness. A crisis is defined as being unable to breathe to the point that one needs a ventilator, which is a breathing machine. This usu...ally occurs over days to weeks, not suddenly, as the term suggests. The crisis is often induced by another medical condition, such as an infection.
In a crisis, the most dangerous signs are breathing and throat muscle weakness. The shortness of breath may become severe enough to require hospitalization for breathing support (ventilator), as well as treatment for the underlying infection. If the problem is not identified and treated correctly, it could lead to death. Problems with swallowing (choking and coughing frequently while eating) from throat muscle problems may lead to aspiration of food into the lungs, which will lead to pneumonia. It is important for MG patients to notify their neurologists with symptoms of shortness of breath.
(I've been living with shortness of breath for a couple, 2-3 years now, worsening; been hospitalized for rule out heart attack how many times now? And I choke all the time. This is my baseline. I'm always short of breath. I can't take three steps or finish a sentence half the time without running out of air. I always thought it was Babs. Now I know it's Mya.)
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Myasthenia Gravis causes muscle weakness that becomes significantly worse with activity. Double vision, swallowing and speaking abnormalities, difficulty walking and using the arms are common symptoms.
Crisis situations, where muscle weakness involves the breathing muscles, may occur without warning. These attacks seldom last longer than a few weeks. Hospitalization and assistance with breathing may be required during these attacks. Often plasmapheresis is used to help end the crisis.
Quality of life can vary depending on the severity and the cause. The drugs used to control MG either diminish in effectiveness over time (cholinesterase inhibitors) or cause severe side effects of their own (immunosuppressants). Most patients need treatment for the remainder of their lives, and their abilities vary greatly.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Personally, I have to say I could never get through ANY of this without all of you, LymeFriends, and Facebook. The Lyme Community has not only gotten me through these last six years, but also helped me completely change my attitude, outlook, and turn despair into utter gratitude for the people in my life whom I love so much that just lift me up every day.
I hope I give back half as much as I get! Gosh you all mean so much to me!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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TerryK
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Tracy, I'm stunned and so sorry to hear about this.
You have been such a tower of strength while dealing with so much adversity and once again, it's easy to see your character and strength shining through.
I'm so glad to hear that IVIG is helping. That is a very good sign. I'll be praying that you go into remission and stay there.
Rumigirl
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Oh, Tracy, I just pray that with high-dose IVIG, the acetylcycholine med, continued TBI treatment, and a whole lot of prayer from all of us, that you get better enough that you don't have to go to the steroids or thymectomy!!
Please don't give up on TBI treatment, along with IVIG and the less extreme treatments for MG! I still believe that this could improve from that (not that I'm a neuro, but I've sure seen a lot of extreme illness from TBI's!). Plus all the other pathogens, like Chlamydia Pneumonia, Mycoplasma, etc., etc. And XMRV. And on and on.
Love, hugs, and prayers to you.
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I was wondering if there is any possibility that the antibody test for MG came back positive due to a passive transfer of those antibodies through IVIG? I don't mean to question your diagnosis but my personal experience with IVIG has shown this can happen with other antibodies (hepatitis, etc) but I am not sure if this can happen with MG specific antibodies.
And by the way, don't give up on IVIG treating small fiber neuropathy! I have SFN and IVIG has helped (skin biopsy results have improved and I am also feeling quite a bit better).
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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Tracy9
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Davidx, interesting question...and I am so so glad to hear your great results with IVIG for SFN! How long did it take for you to see results?
I will ask about your question. But I must say, it's not that I want to have MG because I don't, but I have never looked at anything before and had it explain so well everything that is happening with me.
The diagnosis, unfortunately, fits me so perfectly it's frankly terrifying that I may have had this for years undiagnosed. It explains SO much...the reason I have difficulty breathing so often, can't hold up my own head, always have to lie down, weakness in arms and legs, deteriorating vision, why I can't talk, why my muscles are so weak and give out so fast (lose my voice, feel exhausted after talking for a few minutes,etc). My friends tease me about my "phone aversion" and I just say "I can't talk, it's too exhausting." It seemed wierd to me, now I get that MG weakens your talking muscles.
Breathing so often feels so tiring, I've been to the ER countless times for shortness of breath which of course I attributed to Babs. MG weakens your breathing muscles, and the way they describe it is EXACTLY how I feel, like it is too much effort to take a breath.
My choking issue has gotten so bad others are always commenting on it; but it has improved over the last month or so with IVIG.
I could go on and on....I just hope that when I start the medications for it I get some strength back. I will of course stay the course with treating whatever else needs to be treated; Lyme, Babs, Bart, and of course the SFN, which is still a big problem for me and a separate issue.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Well right off the bat I have to say I am sorry to hear this news, but you are not alone. About 4.5 years ago I came down with what was determined Lyme meningitis and treated with Ceftriaxone through a pic line. End of story right? Not really about a year later I began getting severe migraines and numbness and weakness in my arms... Treated with prednisone and migraine meds and got better. Well almost two years ago the weakness came back with a vengence and through a series of fateful events was found to be generalized Myasthenia Gravis. I have been hospitolized many times for crisis situations and have been on high dose prednisone, imunesuppression, Mestinon, and IVIG with some benifit but nowhere near normal... I am 35 and was active and otherwise healthy until this tore apart my life. The Docs are not interested in what caused it because once your immune system begins to produce the 3 main offending antibodies then there is no shutting it off. Unless you go through hi-dose cyclophosphomide chemotherapy to kill off your adult immune system down to your bone marrow stem cells and regrow your immune system. If you need anyone to talk to PM me and I can share more... This is truly a hard road and a tough diagnosis, I pray every night for all of us and wish you the best in your treatment!
Posts: 6 | From Boston Ma | Registered: Feb 2008
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lpkayak
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tracy-i am really glad you are hearing from MG experienced ppl to help support you wit this.
i just want to mention that this sx:
"... (lose my voice, feel exhausted after talking for a few minutes,etc). My friends tease me about my "phone aversion" and I just say "I can't talk, it's too exhausting. "
for me was MCS
take care.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Tracy9
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I do know that all of these symptoms overlap with other things, there's no question of that. But I do have every single symptom unfortunately of this ugly disease, and fairly advanced, too, it appears.
aw3, finally someone else who has it, though I'm so sorry for you as it sounds like you have had a very rough road. I guess I thought more Lymies would have it as infection can trigger autoimmune diseases.
I would like to talk to you more; I have lots of questions. Thank you.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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karenl
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Tracy, it is right you have the symptoms of MG, MCS is a bit different, I think you have the feeling that your muscles are weak. Do you see your skin looks old too and people think you aged a lot in the last months?
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