I am 36 years old (m) and have Lyme since 1994 (diagnosed in 2007). I have severe muscle weakness and muscle pain ever since. All this is pretty symmetrical and almost in every muscle of the body, especially the weakness: there is no muscle that has "normal" power. My LLMD always told me that this does not fit to Lyme symptoms.
Now, things are as bad as never before: although I am getting Ceftriaxone again and there is an effect on other symptoms, the muscles keep getting worse. I have severe pain even when sitting or lying, mainly in the thighs. Every step is a living nightmare .... In addition to this, my creatine kinase ( http://en.wikipedia.org/wiki/Creatine_kinase ) is constantly high: never lower than 200, often higher than 300 lately.
Now, my general practitioner believes I might have a myopathy. However, there is no doubt in "official" medical literature that Lyme myositis exists. Even Steere says this: http://en.wikipedia.org/wiki/Dermatomyositis
But .... I could not find literally anyone here in Germany with similar symptoms to mine. Hence my question: is here anyone with similar symptoms, high CK and maybe had a muscle biopsy?
Thanks in advance & greetings from Germany, Guido
-------------------- "There's something rotten in the state of Denmark; though this be madness, yet there's method in't." - Hamlet (almost ) Posts: 99 | From Koblenz, Germany | Registered: Oct 2009
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posted
My major symptom is progressively weakening muscles. Mostly in my thighs, but every where, back, neck, arms. Pain also, but not as bad as the weakness. Also have high CPK, High CRP. Have avoided muscle biopsy in hopes eventually Lyme and Bart treatment would help.
My LLMD knows about the muscle weakness and the tests showing muscle damage, and seemed to believe it comes with Lyme and Bart.
I know how you feel, it's scary and so debilitating to feel like your muscles are slowly atophying...but still hoping it will get better with longterm Lyme treatment.
Anyone else have muscle weakness as huge symptom?
Posts: 348 | From MA | Registered: Dec 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yes, I suffer with this. A muscle biopsy is not a terrible procedure. I've had 3 over 12 years. I say do it and rule out those issues. Hell, the suffering is bad enough that it's foolish not to. Just make sure to see the RIGHT docs and facilities if you do because there are very few experts in this area.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I've never had a muscle biopsy, so I'm sorry that I cannot give you information on that. However, if it's helpful, the muscles on the right side of my body have become weaker and smaller over the past 18 months -- so noticeably that a new doctor and my massage therapist have commented. For example, my right arm used to be much stronger than my left; now it is weaker.
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
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posted
Lyme is a neurological disease. When neurons are killed, the muscles don't work and begin to atrophy. Not everyone with lyme has this, but it is known in a number of cases.
I personally have decided that unless a lyme doctor requests these invasive tests, I will not do them. They only document the damage, not repair it or even tell you what is causing it. And some of the specialists who do this kind of testing are very ignorant about lyme, so they may write opinions that are misguided, and not help you at all.
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by lou: .... They only document the damage, not repair it or even tell you what is causing it. And some of the specialists who do this kind of testing are very ignorant about lyme, so they may write opinions that are misguided, and not help you at all.
Did you say "some"?? A specialist in myopathies is always a neurologist, so chronic Lyme does not exist, normally.
Then again, there is always the possibility that you have lice AND fleas, as we say in Germany. There are about 800 (sic!) different myopathies.
Best regards, Guido
-------------------- "There's something rotten in the state of Denmark; though this be madness, yet there's method in't." - Hamlet (almost ) Posts: 99 | From Koblenz, Germany | Registered: Oct 2009
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quote:Originally posted by Beagle: .... My major symptom is progressively weakening muscles. Mostly in my thighs, but every where, back, neck, arms. Pain also, but not as bad as the weakness. Also have high CPK, High CRP. ....
That's interesting .... I'm having the pain as bad as never since a few weeeks: as I said, even when doing nothing ....
So what's CPK? Or do you mean CK, creatin kinase?
Best regards, Guido
-------------------- "There's something rotten in the state of Denmark; though this be madness, yet there's method in't." - Hamlet (almost ) Posts: 99 | From Koblenz, Germany | Registered: Oct 2009
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quote:Originally posted by lou: .... Lyme is a neurological disease. When neurons are killed, the muscles don't work and begin to atrophy. ....
My neurological tests are all okay, "of course", mainly EMG.
What is disturbing me so much is that the weakness is so equally all over the body. And there are myopathies in which the metabolism of the muscle doesn't work properly.
Best regards, Guido
-------------------- "There's something rotten in the state of Denmark; though this be madness, yet there's method in't." - Hamlet (almost ) Posts: 99 | From Koblenz, Germany | Registered: Oct 2009
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quote:Originally posted by seekhelp: .... Yes, I suffer with this. A muscle biopsy is not a terrible procedure. I've had 3 over 12 years. I say do it and rule out those issues. ....
So you didn't get any result? It depends on how big they make the biopsy: there are two versions. A small one, where only a small part is punched out and a bigger one where a greater part is cut out.
I will let me tell how "big" the operation will be and then decide whether I will do it or not. However, they already told me that after all the preliminary examinations that it is very unprobable that there will be a result in the biopsy. However, it might be a metabolic myopathy, they said, which can only be seen in the biopsy. Very helpful, isn't it?
Best regards, Guido
-------------------- "There's something rotten in the state of Denmark; though this be madness, yet there's method in't." - Hamlet (almost ) Posts: 99 | From Koblenz, Germany | Registered: Oct 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Hi Guido Glad you are able to access Lymenet again.
The symptoms you describe are very common with lyme. When I was very ill I had similar issues and extremely tight muscles that were very painful.
I experienced muscle weakness, clumsiness, tightness and felt generally weak and extremely fatigued. It resolved with aggressive treatment but it did take a very long while, years in fact, into treatment to see improvement with these symptoms.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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quote:Originally posted by Abxnomore: .... Hi Guido Glad you are able to access Lymenet again.
The symptoms you describe are very common with lyme. When I was very ill I had similar issues and extremely tight muscles that were very painful. ....
Yes, I'm back again!
That's interesting, because that's how ist was all the time: when I felt really bad, the muscles got tight, weak and painful when moving. When ABx were effective, also the muscles felt much more "normal".
But now, things seem to be paradox since 2-3 months: although the Ceftriaxone is effective at the moment (which I can feel first of all from the headaches, which are almost 100 % gone), the muscles remain very, very weak and painful even when not moving. And they are not tight any more, but just atonic. It feels like it never felt before. That's the problem ....
Best regards, Guido
-------------------- "There's something rotten in the state of Denmark; though this be madness, yet there's method in't." - Hamlet (almost ) Posts: 99 | From Koblenz, Germany | Registered: Oct 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My major lyme symptom was extreme muscle weakness. That's how lyme stole 5 years of my life.
I could only stand for 1 minute, walk 2 blocks, hold the phone to my head 30 seconds, and could not hold my mouth open to have my teeth cleaned.
I dreaded rising up from a chair or stepping up a curb. My legs shook like jello if I walked down a flight of stairs.
I had to sit down and rest twice while getting washed (not a shower) and dressed.
This horrible symptom went away with good lyme treatment.
It is now 6 years since I completed my treatment and I am still symptom free, enjoying my life. I have the same life I had before lyme disease.
I followed the Burrascano protocol. High-dose combinations of antibiotics, treated lyme, babesiosis and bartonella, took supplements and artimesinin, did the 1-hour Burrascano weight lifting program every other day, and followed the anti-yeast diet throughout my treatment.
It was all 4 prongs of the protocol that got me well:
meds supplements exercise diet
When my doctor told me I had to start the weight lifting program, I felt like he told me to climb Mt. Everest. I could hardly walk down to the basement to get on the weight bench.
All I could do at first was 10 minutes. But, I persevered. Over a period of months, I was eventually doing a full body workout--legs, back, arms, chest, abdominal muscles, etc.
Then, I began to add more weight to what I was lifting. Believe me, seeing my progress on the weight lifting was so uplifting for my mental attitude. But, it was awfully hard at first. It was horrible at first, really. I had my husband there with me to encourage me because it was so discouraging at first.
Please read what Burrascano says about what the weight lifting does for the body. It is on page 31 of the Guidelines, and starts with these sentences:
"LYME DISEASE REHABILITATION
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission."
I wish you the very, very best.
------------------------------- God still talks to people today!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Very good advice.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Well, I finally had it made and after a first glance at the lab, they said "it looks altered". Now, a DNA test is performed aiming at "Myotonic dystrophy": http://en.wikipedia.org/wiki/Myotonic_dystrophy
Mmmmh, I am pretty scared now, frankly ....
I am afraid I not only do have lice and fleas, but plague and cholera.
Best regards, Guido
-------------------- "There's something rotten in the state of Denmark; though this be madness, yet there's method in't." - Hamlet (almost ) Posts: 99 | From Koblenz, Germany | Registered: Oct 2009
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Abxnomore
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Sending good wishes your way, Guido. I hope the DNA tests prove negative.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Guido-
Have you been checked for thiamine deficiency? This can cause muscle pain and severe muscle weakness and neuropathy and fatigue. Medications such as Ceftriaxone (Rocephin) can deplete the thiamine (B1) from your body and cause myopathy with elevated creatine kinase....
Please research thiamine deficiency.....apparently the testing is a "whole blood test" that not all labs can do...I think Mayo clinic does it....
quote:Originally posted by Bugg: .... Have you been checked for thiamine deficiency? This can cause muscle pain and severe muscle weakness and neuropathy and fatigue. Medications such as Ceftriaxone (Rocephin) can deplete the thiamine (B1) from your body and cause myopathy with elevated creatine kinase....
I had injections with B1, B6 and B12 in a high dose already last year. In addition with the Ceftrixone and Creatin, I felt a great improvement all over, including the muscles. This did last for 3 months, but I can't seem to repeat the effect now ....
Best regards, Guido
-------------------- "There's something rotten in the state of Denmark; though this be madness, yet there's method in't." - Hamlet (almost ) Posts: 99 | From Koblenz, Germany | Registered: Oct 2009
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quote:Originally posted by Abxnomore: Sending good wishes your way, Guido. I hope the DNA tests prove negative.
Thanks! But actually, I don't know what to think now. If I read about that myopathy, there are a lot of things that would fit ....
And the neurologists that performed the biopsy don't want to know about Lyme and my LLMDs don't want to know about myopathy. It's pretty absurd.
But if there is no real result in the biopsy, I will ask for a Borrelia PCR. The "funny" thing is: a DNA test like that will take 3 months. But other results of the biopsy will be there in about 6 weeks.
Best regards, Guido
P.S.: My new LLMD told me that the muscle smyptoms would fit to babesia. I will be tested fot that.
-------------------- "There's something rotten in the state of Denmark; though this be madness, yet there's method in't." - Hamlet (almost ) Posts: 99 | From Koblenz, Germany | Registered: Oct 2009
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I hope you find some answers and effective treatment. Your post caught my eye as I was in the hospital in October for 5 days with a dx of Myositis/Rhabdomyolysis. This was after self-injecting Bicillin LA 3 x weekly for 5 months.
After one of my injections, my hip just blew, horrific pain etc. By the time I went to the ER I was going into shock, CK reading was 40,000+.
Anyway, my kidneys recovered after 5 days of flushing and ck levels have since been in the normal range. Needless to say, no more injections for me and have now been on IV Rocephin for almost 5 months. I have not had a muscle biopsy and have no plans to do so.
Crazier still, I can run for 2 hours on a trail (though my feet are a bit numb and my coordination is impaired). So...on a daily basis, I don't really have overall muscle weakness....I am just neurologically very fouled up in a number of other ways....one crazy bugger. Good luck. TS
Posts: 566 | From West Coast | Registered: May 2008
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