posted
when i recently spoke to the PA at my LLMDs office, the PA asked if I had ever been tested fo this. And I haven't.
she said that some of my symtpms suggested this, not to worry, unlikely, but should be ruled out. Seems reasonable-very much so. She mentioned that I didn't really present typical symptoms of myasthenia gravis, but with my arm weakness, and increased muscle fatigue and weakness as the day progress, (and I am now losing muscle mass) perhaps it should be looked at.My fatigue has generlly felt more from the pain and actually in my muscles than the chronic fatigue that i know others experience....
I have all the lyme stuff though, joint pain, so called fybromylagia, dysthasias, numbness, sensory loss, ect.
can it all go hand in hand?
I was a bit familiar with this disorder and just did a web search. And now I realize that probably a few of you out there might have more answers. Anyone have this dx with their lyme dx? Atypical presentations?
Although I hear the assessment for this is relatively simple, nothing medical is simple here in Santa Fe. So of course, I want to know what I am doing and hear from a voice of experience before I look into this more.
thanks as always, all of you, for your help
jif
Posts: 208 | From Santa Fe | Registered: May 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
jif,
I, too, was told I might have MG as well as many other labels.
I was tested for it 3 different times. I was told the testing is frequently done wrong so each neuro wanted to re test.
I contacted the MG organization and was told which tests need to be done.
I told UCSF Medical Center what the MG organization had told me.
The neuro said they did not believe in that test.
I can't recall what the test was at this time. Sorry.
Yes. I was told you could have both going on by the MG organization.
It seems when things attack the inside of the body we all have a lot to learn.
I have noticed that with treatment for lyme I am not waking up at night with breathing problems.
I also was on a MG yahoo group while trying to rule out MG.
I recalled one guy getting something and getting treated with lots of abx at the hospital.
HE said he no longer had the symptoms.
Others on the web site, wondered if their symptoms were lyme related too instead of MG.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I was actually diagnosed with MG last summer before my lyme diagnosis, but I presented differently from anyone the neurologist had ever tested. From what I"ve heard, it's common for lyme to be misdiagnosed as MG.
However, the only good thing that came out of that diagnosis was I was put on a drug called Mestinon. It was supposed to help my muscle weakness, but instead it helped my tachycardia and low blood pressure.
It's still a good thing to rule out. Especially because MG is treatable, so if you have it, you want to know.
Good luck!
-Lauren
Posts: 22 | From Maryland | Registered: Dec 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
MG looks to be caused by an entirely different pathogen.
Magnesium should NOT EVER be given/taken if one has extreme muscle RELAXATION.
The muscles cannot contract. This reaches the point where one cannot even keep his (more often males) eyes open.
The "cure" today is having the thymus gland removed and then lifelong small doses of steroids. It does work!!! I've personally seen this in the son of a friend who came in contact with ???? likely after a trip to a 4 star dude ranch out west while on vacation.
A "flip" is cerebral palsy...constant muscle contraction.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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I tried to PM you about the testing but your mailbox is full. I had testing done at Johns Hopkins, by a doctor who specializes in MG. I had an EMG, single fiber EMG and bloodwork drawn that was sent to Mayo to look for antibodies.
My EMG was negative, but my single fiber EMG was positive. Because of the positive single-fiber EMG and other factors, I was diagnosed with MG. However, a few weeks later I tested positive for lyme, so we've been doing the lyme treatment first, just to see if my MG symptoms are actually caused by the Borella.
If you have any other questions, I'd be happy to try to answer.
Marine,
You're mistaken about the cause of MG. MG is caused by ACH-receptor antibodies and has not been linked to any pathogen. Sometimes the ACH receptor antibodies begin attacking as a result of a thymoma, or tumor on the thymus gland. But many times, a tumor isn't present. The most common treatment for MG right now is IVIG treatments, which are a kind of blood product that acts to "reset" the autoantibodies.
[ 01. January 2007, 03:36 PM: Message edited by: Lauren M. ]
Posts: 22 | From Maryland | Registered: Dec 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
The first neurologist that evaluated me said I did NOT have MG. Unfortunately, the possibility of lyme disease never crossed his mind.
I think it is good to rule out anything else that you could possibly have.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
years ago the bushes (dad and mom) were both dx with it (i think-don't hold me to it for sure-i am foggy these days) but i remember the press release-about it wasn't a big deal-easy dx and tx
ha ha
all i could think of was their "summer place" on the ocean in k'bunk maine. its one of those things that has stayed in my head for years and i actually remembered it at an appropriate time
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
To Lauren M:
I believe the antibodies which block the AcH receptors are doing so FOR A REASON...protective.
This happens IN RESPONSE to a pathogen. The antibodies form in RESPONSE. It maybe that by blocking those receptors, the body is preventing a PATHOGEN from locking on.
Watch the "dates" in the following board discussions:
My point...some PATHOGEN is PROVOKING this body RESPONSE.
You might be interested in knowing that the AIDS drug, methotrexate REDUCES CHOLINE. Another "autoimmune" drug, Humira, blocks TNF alpha and while one DOES FEEL BETTER, osteoporosis...bone destruction... CONTINUES. Now let's add Foxamax for the osteoporosis...that drug INCREASES TNF ALPHA AND CRP. Not exactly "heart friendly"!
Think about that!
Our body doesn't just suddenly develop antibodies to its own receptors/tissues. It doesn't block or attack its own tissues without reason. I believe those antibodies are trying to PREVENT a pathogen from locking on OR in the case of tissue...trying to REACH the infection.
P.S. If you believe IVIG "resets" the immune system...the "autoimmune" drugs
FAIL TO ELIMINATE THE UNDERLYING INFECTION
BUT DO PROVIDE SOME SYMPTOMATIC RELIEF and DO PROLONG LIFE.
We must get to the ROOT CAUSE.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
I thought Methotrexate was an RA drug not aids. Also used in Cancer ??
Posts: 355 | From NY | Registered: Jan 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
First note: IVIG is very, very expensive. It takes a LOT of blood donations to harvest the immunoglobulins and they have to be the "right" ones and "healthy" ones to work. This is also not a "one time works" thing. So the costs would be astronomical.
Here's the link:
Arch Phys Med Rehabil. 2003 Sep;84(9):E34-E35. Related Articles, Links
Return of muscle strength and function after use of intravenous immunoglobulin for Lyme disease-associated acute demyelinating polyneuropathy.
Patient: A 58-year-old man with babesiosis and Lyme disease.
At follow-up 8 weeks later, muscle strength had fully returned.
Discussion: This case illustrates that Lyme disease-associated demyelinating polyneuropathy may be treated with IVIG. The potential use of IVIG in this population is based on its efficacy in those with acute demyelinating neuropathy of alternative etiologies. Conclusion: IVIG can be considered as a treatment option for demyelinating polyneuropathy associated with Lyme disease.
PMID: 13680780
The above link no longer works which is very puzzling since it was a ``cut and paste'' on my part. If whoever is reading this has access to a hard copy of this journal, I urge that person to find it and copy it. The Sept. 2003 issue of that journal may be found in hospital or medical school libraries.
I still believe in Freedom of Information and was saddened to see this information no longer available on Pubmed.
Cancer...some forms (esp. breast and prostate) have been indeed linked to following the glycolysis and cholesterol pathways...simultaneously. It is likely Bb is not the ONLY pathogen capable of triggering this. What we're talking about is DNA damage.
There is only ONE NUTRIENT capable of restoring the brakes on those pathways simultaneously.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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thanks for your responses, some deatailed, will have to print out and really concentrate! (Especially after reading the recent post about cognitive profiles of lyme patients...)
interesting about the magnesuim--that is the supplement that I consistently take, noone told me about muscle weakness, seemed to help with other neuro stuff??!! I should learn more.
I am posting more about the muscle weakness topic soon if anyone feels like looking at that...
I will clean out my pm box, sorry I missed pms
and again, thanx
jif
I
Posts: 208 | From Santa Fe | Registered: May 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
When lyme hits, the grams of magnesium which are pulled from storage matches that % stored in muscles -> weakness. Roughly it is a 33% drop in the total body stores. I'm talking GRAMS, not milligrams. The kidneys are constantly keeping the pH balance and excess Mg will be eliminated...ongoing. Pulled from storage, lost, pulled from storage, lost.
So, it looks like the very first few days of the infection (at the time of the rash) Mg breaks from ATP (it is stored INTRAcellularly as Mg-ATP) and Mg then is in general "circulation" in somewhat higher amts. for multiple reasons.
In high enough doses it will displace zinc.
It can help prevent "thick" blood.
It is a natural antihistamine and anti-inflammatory.
Mg INactivates HMG Co A reductase (liver enzyme) to halt VLDL (very low density lipoprotein) release and to prevent Bb from forming its lipoprotein cell wall and to halt placque from forming on the arterial walls making it harder for our antibodies to REACH the infection.
Also..Mg (and more abundant Ca) are needed to make HEALTHY, not damaged - fab portion - antibodies. Too many are damaged when Mg levels drop. We KNOW this....documented, pubmed. There are many damaged (won't work) antibodies specifically made to knock off Bb, but can't UNLESS Mg is restored and that "fab" portion is repaired.
So...NFkB (cell signal) stays active...yo...more TNF alpha (inflammation)...make the entire system acidic 'cause our antibodies are imperfect. Quick....find another back-up route.
Bb is PFK dependent. We need this enzyme to make ATP. Also, other nutrients drop dramatically...as we try to protect our DNA.
We make very little ATP using sugar, a LOT (!) more ATP when we use oxygen, but Bb prefers sugar.
ATP is the energy transporter. It must have Mg to work...which is WHY it is found as Mg-ATP.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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