posted
I'm still on the prowl for a diagnosis of my condition. I have an appt with a LLMD next week.
Meanwhile, I saw my Rheumy today who said I have "inflammatory muscle disease" based on my inability to lift weight higher than shoulder height and difficulty with legs getting up the stairs or off the floor, etc.
Last time I saw the Rheumy I had "inflammatory arthritis" so apparently my diagnosis has changed. In reality my symptoms have developed past joint pain and into muscle issues along with tingling in arms and legs, fatigue, night sweats, etc. that the Rheumy says are non-related.
My Creatine Kinase level is up considerably so there is obviously some type of muscle injury...waiting for another blood test to see if it's going up or down and then possibly will have an EMG done.
I know Lyme treats everyone differently but just wondering if muscle weakness/high CK is typical.
ETA: My CPK is 1900, AST 76, ALT 126 These, so far, are the only positive tests I've had in 9 months to prove that there really is something wrong with me!!
Karen
[ 07. July 2006, 07:55 PM: Message edited by: KP ]
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
posted
I believe muscle weaknes is a part of lyme. My legs are very weak with fatigue and walking can be difficult. The numbness and tingling are a part of lyme...i have both this.
have you been tested for lyme yet?
lesley
Posts: 120 | From NB Canada | Registered: Jan 2006
| IP: Logged |
I have at least 5 negative Lyme tests...it's always the first question the doctor's have asked, but so far I test negative. I live in a high tick-infested area but have no memory of a tick bite or rash.
I'm hoping the LLMD will be able to run other tests to prove or disprove the Lyme. I just want to know what I have and how to treat it but all I know is what I don't have! So frustrating!
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
posted
a good LLMD will diagnose you clincally. My LLMD took blood, and said my test came back a hair below what would be considered positive, and most normal docs would brush it under the carpt and say "oh she had it when she was young, thats why she has antibodies".
But the LLMD put on doxy before he even got my results.
He's a rheumy too, so he knows the different diseases. i feel I am in good hands.
And yes, muscle weakness is a big problem of mine. Some days I feel almost normal, then others I feel like my legs are hardly there to support me.
Inflammatory muscle disease isn't even a diagnosis.
When docs can't figure out whats wrong with someone they simply slap them with an autoimmune disease label, give them steroids and pain pills and tell them to try and get on with life.
Posts: 594 | From NJ/NY | Registered: Jun 2006
| IP: Logged |
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I had both. My CPK was not as elevated as yours but was still elevated.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
| IP: Logged |
posted
I had normal CPK level even with visible muscle wasting. Researching the test led to the discovery that it does not track muscle damage all that well. Another dubious test.
My doc re-ran this test, along with other muscle related tests (aldolase, ESR) which were all normal, which results, along with the results of nerve conduction testing (abnormal), led him to conclude that it was neurolyme acting on the nervous system thus causing the muscle fatigue and wasting.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
That is a high CPK. Did you do any exercise before the test? Really high CPKs can be from metabolic disorders, too, I think. However, it can be inflated if you did some exercise that "injured" the muscles.
Remember that tests are a point in time and often need to be repeated to make sure it is not a one time result. My CPKs were up once and then subsequent tests were never elevated. Also had elevated lactic acid once and not the second time tested.
I have muscle weakness (mainly on one side of my body), tingling, myoclonic jerking, etc. Neuros are stumped. I am now realizing it could be from my Lyme and/or Dysautonomia (which causes most of the same symptoms as Lyme including muscle weakness).
Posts: 331 | From virginia | Registered: Nov 2005
| IP: Logged |
posted
My CPK is high, though not as high as yours....I think just 200 over normal....and has been the same for 2 years. I do have muscle weakness but not wasting. my nerve conduction tests were abnormal and I have had fasciculations 24/7 for 2 years. I have tested positive for lyme and ehrlichiosis and suspect babesia. So I attribute the elevated CPK to tick diseases so does my LLMD. Hope this helps. Betsy
Posts: 107 | From VA | Registered: Mar 2005
| IP: Logged |
No, I did not exercise prior to the testing! LOL I did walk from the car to the lab - that's the most exercise since I've become ill.
I have significant muscle weakness in my upper arms and legs but it's only been for the past 6 weeks to 2 months so hopefully it's a temporary situation and not muscle wasting.
My Rheumy explained that if he punched his leg muscle and immediately had a blood test that his CPK would probably be about 300 due to "injury". He seems to think it's not worrisome but an indicator toward the type of rheumatological disease I have. We'll see what the LLMD thinks!
I did test negative for Ehrlichiosis...but I haven't researched that test enough to know if it's trustworth. The ID wouldn't test for Babesiosis...with my luck, I probably have some other disease that doesn't have a name!
Thanks again - it helps to know others have similar test results and that I just might get well again! Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
I have had 3 blood tests for CPK and it was high (greater than 200) every time. I am sure that your doctor fractionated the results but just in case you should have a fractionted CPK test done.
My CPK levels range from 200+ through almost 1,000. My EMG was normal and so far nothing can explain why my CPK is high.
So your question is good...can lyme cause high CPK levels? The LLMD I am seeing has told me that he has treated patients with lyme who have had high CPK levels and that some did fall with treatment. However, he is not certain that lyme is necessarily the cause of elevated CPK. So we don't know. But, as you go through treatment, it would be good to monitor the CPK levels to see if it changes. Of course, you still havent been diagnosed with lyme yet but hopefully the LLMD you are seeing can help clear things up.
I think an EMG and or a muscle biopsy can help determine if there is a muscle disease/disorder but I don't know enough about it to really say for sure. It's funny timing with this topic because I am seeing another specialist very soon to address my CPK levels since the neurologist I am seeing is concerned about it.
Good luck and let us know how your LLMD appointment goes!
~David
By the way, I dont know the scale your tests used but usually the AST and ALT should be less than 50 or 60 so it appears yours might be a little high maybe?
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
| IP: Logged |
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I think it is unlikely that you have a muscle disorder given that you have both "muscular" and joint problems.
Lou also raised a good point about the aldolase levels in your blood. That would rule out a primary muscle disorder. The high CPK with normal aldolase indicates a neurological origin to your muscle problems.
Neurological symptoms + joint symptoms is very common in lyme disease.
No way I would consider a muscle biopsy. EMG's typically show nothing either so if normal blood tests don't lead to a diagnosis I would work with the LLMD for a while and see what happens.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
| 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!
![[Smile]](smile.gif)
Printer-friendly view of this topic