posted
Lots of lyme patients have reported they have elevated CPK levels...that high I am not sure about. Mine is elevated but only slightly. Are you referring to muscle CPK? If so, do you have muscle weakness or muscle twitches? Betsy
Posts: 107 | From VA | Registered: Mar 2005
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posted
My CK levels continue to be high (one value was almost 1,000) but the LLMD I am seeing continues to monitor it to see if it comes down with treatment. I dont seem to have any symptoms though of muscle weakness, etc.
2,000-4,000 sounds rather pretty high and if there is weakness in addition to the high levels, I would think there would be a reason? I'm assuming at Mayo they did a muscle biopsy, EMG, etc.
I think an LLMD would be a good next step.
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
High CPK was one of my first problems.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
Mathias, thanks for your post! I have my friend sitting here next to me. She wants to know how high
your levels were/are.
I'm asking her questions about what has been told to her so far by prior drs and Mayo. Let me know if this makes any sense to you or anyone else.
Her muscle biopsy was taken and sent to Mayo. they told her that her mytocondria does not use ATP (or something like that) correctly, which leads to low endurance, pain and fatigue.
The end result of the biopsy is a necrotizing myopathy. And then added: They don't know what it is. She was sent home with instructions to take a creatine body building type of supplement of her choice, a good multi-vitamin and CoQ10 and a perscription for clonazapam ( a mild tranquilizer to help her to sleep).
This is all a foreign language to me but this girl is totally miserable. Her muscles are atrophying too fast and they told her that she has to keep a balance between building the muscles up to keep it at least even with the rate that they are dying.
They also told her to not have her labs done all of the time to see what her Cpk levels are because it will just keep her upset all of the time, so if she has a drastic change to be tested again because what she has now might just be a stage before full blown ALS, polymyocytis , myocitis or sarcadosis.
I know this is alot of info but this person has been my best buddy for years and I want to help her.
Any thoughts?
Posts: 70 | From essex fells, nj | Registered: Jul 2006
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I don't recall the exact value but it was around 300.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
west virginia university tested mine,it was at 2200,something...We got home,there was a message on the machine,saying we needed to come back they messed the test up.So they redid the test,it came back in the 2400's. The doctor said it was impossible,i should be visibly shakeing...Got to admit it was when i was at my worse.Had a muscle biopsy in my left shin portion of the leg,,and then a emg,,,was told i had als,maybe a year to live,,that was in 1996..Found a good lyme doctor a month after that..In three months of treatment my cpk levels were near normal.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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posted
A high CPK and elevated liver enzymes are what finally got me some treatment - but through an LLMD. Here's my story in a nutshell - hopefully it will help someone else.
I started with migratory joint pain in October 2005. Everyone asked if I had a tick bite (not that I can remember) and ran all kinds of blood work - all negative. Saw all kinds of specialists who had a "wait and see" approach to treating me because they really didn't know what was wrong.
In Feb 2006, I was given 5 days of Zithromax for a possible ear infection (really was a tickle that still exists) and then had NO SYMPTOMS for 6 weeks. Beginning in April, the joint pain along with incredible muscle weakness and a myriad of other complaints it me like a ton of bricks! I have never felt so sick in my life.
This time I switched primary doctors and more blood work was done. They discovered my liver enzymes were elevated...two weeks later they were even higher, and two weeks after that even worse! I had a CAT scan and ultrasound (all parts working perfectly). I discovered that elevated liver enzymes could be related to Lyme disease and showed the information to the doctor. He sent me to a Infectious Disease who discovered the high CPK.
Initially my CPK was 300 but it kept going up and up. My rheumy ordered an EMG (muscle testing) after the CPK reached 2600! The diagnosis was inflammatory myositis. I knew from my research that it was likely Dermatomyositis since I also have the skin affected on my fingertips.
While waiting for some of these results to come in, I consulted with an LLMD out of network (meaning he can be honest with me since my insurance company isn't paying for his summer home). His initial response was that I probably did not have Lyme since my symptoms are more arthritic and most arthritic lyme patients test positive.
He did give me a two week trial of abx and I saw dramatic results! I was able to start going up the stairs without stopping to catch my breath. I was able to walk around my block (1 mile). I was able to lift things above shoulder level again.
Then the blood work came back and PROVED there was a change. My CPK dropped from 2600 to 1900 after 2 weeks of abx! My liver enzymes are also going down. The LLMD called me with the results and told me that although it is rare, there are case studies of patients with Lyme Myositis who were treated with abx and cured. I started IV the next week.
On another note, my mother was in nurses training in the 1950s...and I was looking through one of her textbooks and reading about myositis. Back then they believed it to be caused by an infectious disease such as Typhoid Fever.
Today they call it auto-immune which really means they don't know what causes it. The docs are too quick to throw steriods and other drugs (chemo) at a patient when a simple treatment of abx could possibly fix everything!
Sorry this is so long, but it sounds like the original poster is dealing with alot of the same things I've just been through.
Do a google search on Lyme Myositis and you'll be surprised at what you find!
Feel free to email me any questions!!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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posted
Bugged, I used to lurk on the Brain Talk forum because I thought I had ALS due to my severe muscle fatigue, wasting and cramping. I had elevated CPK levels once but they went down after that.
I have heard that very high CPK levels is not due to ALS but could be due to other disorders. I don't remember them off hand.
I know your friend is probably very scared about what could be causing these symptoms. What did her EMG test say? If she has ALS, I would assume that she would experience rapid changes but I know that they waiting is intolerable.
What is her next step other than taking creatine, etc? Did they want to see her in a few months?
Posts: 331 | From virginia | Registered: Nov 2005
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posted
Did they say that she has a mitochondrial disorder? The ATP thing leads me to believe that she may have something of that nature. I was tested for that myself after having elevated lactic acid levels (and muscle fatigue) but it didn't end up being the case. They stopped short of a muscle biopsy.
So, what is a necrotizing myopathy? Is that just a symptom and not the root cause?
Posts: 331 | From virginia | Registered: Nov 2005
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posted
Vachick, I'm going to try to answer your questions the best I can.
I called my friend on the phone to get the answers. Here goes:
EMG results - Normal
Do they want to see her again in the next few months - No, unless her CPK goes up even more (she knows when this is happening because her muscles get a very strong burning sensation) If the CPK goes up, they would want to do another muscle biopsy.
Is it a mitochondrial disorder - Yes
What is necrotizing myopathy - Necro, I think in Latin is death, myopathy has to do with the muscles. Dying muscles
They said that they don't think that she has any of the dystrophies.
We had a post reply from KP that you should look at. My friends story is identical to KP's.
My friend also took KP's suggestion of googling "Lyme Myocitis"
The google then referred her to the PubMed.gov website that explained Lyme Myocitis even more. The definition that they gave was the exact wording that Mayo wrote (about the necrotizing myopathy)
Googling this and our responses to my post has done so much to help her to understand more of what is going on with her. She left Mayo , totally confused and on info overload.
I don't know if this helped you or not. We are trying to understand it. I have Lyme so between my friend and I, it takes a bit of effort to make sense of things!
I wanted to respond to you asap so it might aleast give you additional info to use in your quest for better health.
There's only 8 documented cases of this Lyme Myocitis (according to the net article) so I'm sure info is limited. That's why all of our posts are so helpful.
Thanks again everyone!
Posts: 70 | From essex fells, nj | Registered: Jul 2006
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posted
Great response, bugged. Hope your friend begins to feel some strength. Will keep her (and you) in my thoughts. great information. It is good news that the EMG is normal (i.e. that usually points to other bad things). You are a good friend to be researching this for her. Posts: 331 | From virginia | Registered: Nov 2005
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