posted
Hello all !! Am having a muscle biop on tue. I've been having severe muscle pain on and off for many yrs, just one of many sx's.
I am wandering what anybody elses results or experience from having m biop were like.Thanks for all your help!!! Brl
Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006
| IP: Logged |
posted
Well, I didn't have one and would do a lot to avoid one. Not clear why this will be helpful or what your situation is, apart from muscle symptoms. There are some blood tests that can help to characterize muscle symptoms. Have heard that muscle biopsies hurt.
Maybe someone else will come along with actual experience.
But if you think you have lyme and are relying on an ordinary rheumie, this may be a mistake.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
My husband had a muscle biopsy last year when he was under the possible dermatomyositis category. I'm assuming your CPK levels are high? I hope they've done an MRI to help pinpoint exactly where the "best" place is.
My husband's biopsy was coordinated by our pulmonologist who actually gets things done and the useless rheumie.
The rheumie ordered the MRI (of the shoulder) and the pulmonologist had them do the biopsy of the thigh. Wrong!! The MRI was useless, you don't just do one for fun. We were happy to find out that he didn't have a rotator cuff tear but the shoulder is really far from the quadriceps muscle.
Whether you have mycoplasma or borrelia there are people that get better with antibiotics.
posted
The biopsy turned out to be not very conclusive. I don't have it at hand right now but the muscle wasn't normal but didn't land in the myositis category. There was also a note that prednisone could have caused the changes and he had been on quite a bit of it.
As far as pain, my husband didn't find it very pleasant but he survived. He did bother him for a couple of months. Other people at the myositis website have had different experiences.
Posts: 984 | From San Diego | Registered: Nov 2006
| IP: Logged |
posted
Thanks for your reply Lou ! Yes I feel as though I do have lyme, probably for a long time but I am one of the unfortunate people who have not been able to test +.I was treated by llmd for 2 yrs w/oral doxy & amox &supplements and I felt better.
Long story short 1year later I lost most of what I had gained from treatment and my llmd is not able to help because of his own condition . A terrible thing!!! So for now I'm back to pcp ,neuro,& rheum docs , all very smart people, but I feel like I know more about Lyme,thanks to Lymenet and all of you!!! Biop because of elevated cpk enzymes along w/muscle pain.Maybe they will see some critters?
Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
They will only see critters if you send it to someplace that specializes in that. I know MDL does, maybe Igenex. I highly doubt any other place will look for Lyme in a muscle biopsy.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
posted
My friend had one. She does not have lyme. She had all kinds of muscle pain, numbness, tingling and weakness etc... She had EMG's, CPK's etc....Every test she had was normal. The neuro was looking for a mitochondrial disorder. To the doc's surprise, and my friend, the biopsy showed myositis. She has been diagnosed with dermatomyositis. Not a good disease at all. But it is treatable with steroids.
She was told that the CPK is not necessarily elevated with this disease and may only increase with an acute flare-up.
She was also told that the biopsy can only be taken from certain muscle groups, not necessarily the areas that hurt. Her biopsy was from her thigh which was not really her biggest problem area.
She said her leg was sore but it was worth it to find out what was causing all her problems.
Posts: 340 | From Ohio | Registered: Oct 2005
| IP: Logged |
posted
Thanks Parisa , Aniek , Pattilynn, I appreciate all input!I think I need to demand to know exactly what they will be looking for. I did ask the rh doc todo a TH1 inflammatory blood test first which came back normal. As far as the mus biop goes he said the sample would be looked at under an electron microscope but i don't know where.Should probably ask ! Thanks again!!!
Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006
| IP: Logged |
posted
I just had a muscle biopsy 4 weeks ago...in my right thigh. It really wasn't a bad procedure though the healing did take a couple of weeks. I was also expecting a diagnosis of Polymyositis but the results came back inconclusive.
Specifically, the results showed definite muscle damage but very limited inflammation and only around blood vessels. The Rheumy cannot give a clear cut diagnosis of polymyositis but still wants to treat me for that.
Because of a relapse I suffered (CPK went to 12,000), I ended up hospitalized and was able to see the Infectious Disease specialist who (believe it or not) called and spoke at length with my LLMD. When the muscle biopsy was done, they had it cultured for a couple of other things including a PCR for Lyme (which came back negative).
Buckfever, I see you live in my area (Philly) and was wondering where you were having your biopsy done. I was at Pennsylvania Hopsital for my procedure but the specimen was sent to the University of Penn nuero-muscular pathology lab which is supposed to be the best. I would recommend having this procedure done at the best possible place so they don't ask you to have another one done!
Please feel free to email me privately for more info. I'm in the same boat as you are and we may be able to share info on doctors in our local area.
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
posted
Good morning to all and thanks for the info !KP I pm,d you this morn. Yes I am in the Philly area, actually in Chester county,home to many deer,deer tics,and sorry to say many ,many people w/lyme!!!I just wish it was home to more llmd's!I think I am going to postpone this muscle biopsy until after I see new llmd on wednesday, maybe he can give me some advice. The last thing I need is another worthless test!!! I'm sooooo confused. Thanks again for all the help! Brl Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
Printer-friendly view of this topic