posted
My primary feels that I should get a muscle biopsy to see if I have a muscle disease in my legs, even though I was clinically diagnosed with Chronic Lyme by a LLMD and been on abx for 6 months and certainly not in as much pain as I use to be. Has anyone else been told you may have muscle disease because of the tightness/pain in my leg/upper thigh muscles?
Posts: 190 | From Bourne, Massachusetts, USA | Registered: May 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Did you ever take levaquin for any length of time? and how long ago? When I was on it made my legs hurt deep down and I also tore three tendons.It also took about 6 months for that to clear.
[This message has been edited by treepatrol (edited 29 November 2004).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
No one has mentioned a muscle disease to me. And my leg muscles are incredibly tight.
I do have a friend, who has a fibromyalgia diagnosis, who had a muscle biopsy done. I think she regrets it because the size of the scar and I think it was very painful.
I suggest talking to a specialist about it. Start with your LLMD. Your primary care doctor likely knows less about your condition and lyme than you know.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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lymiecanuck
Unregistered
posted
I haven't been told either that I have a muscle disease, and I have had much tightness, and pain. Also, wasting. This is very common with lyme.
posted
For years, I only knew I had some sort of neuromuscular disease due to neuro symptoms (which never showed up on any EMGs or other tests) and muscle weakness with - this is important - a consistently high CPK level in my bloodwork; this is an enzyme muscle tissue throws off into the blood when the muscles are wasting. People with diseases such as muscular dystrophies show this, but in a much higher level than mine. Still mine has been consistently elevated, which puzzled everybody; my diagnosis was simply "myositis." (Of course this never accounted for the other rotten things since being infected in 1984.) Now, it has finally been explained to me about "molecular mimicry" - the molecules in one of the Lyme disease proteins so closely resemble those of muscle tissue that sometimes the body attacks both. Yes, this includes the heart muscle. I have asked numerous times for a muscle biopsy too, just to see if it would be abnormal, but the docs have refused saying the yield of information they would hope to get wouldn't be worth it. The weakness is in my limbs and is sometimes really quite bad.
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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Lyddie
Unregistered
posted
I also had a myositis diagnosis at one point (am CDC positive for Lyme). My daughter had muscle wasting on her right quad severeenough to cause frequent falling, then surgery. Tightness and pain are really common in muscles of folks w/Lyme.
Having a muscle biopsy seems like real overkill to me. Maybe you didn't go into the whole story- do you have other symptoms w/your muscles?
Even w/myositis, CPK and aldolase (I think?) blood tests were done as a first step, and a biopsy was further down the road because it was invasive.
Have you done physical therapy, or yoga, massage, swimming in warm water, etc. etc? You probably have, but just to let you know that even w/the disease process of Lyme as a cause, these modalities were very helpful to us. We've even done ballet! Glad you think it's hurting a little less. Hope this helps.
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