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Anyone have an elevated CPK with chronic Lyme?
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Anyone have an elevated CPK with chronic Lyme?

Just wondering if anyone had a high CPK with Lyme?
6 Comments Post a Comment
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Avatar_f_tn
I don't recall anyone mentioning it here before now, but I just searched online for --- elevated cpk lyme disease --- and got quite a few hits.  

Does your doc have words of wisdom on this point?
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Avatar_f_tn
I've never had elevated CPK. I did find this reference:
http://www.nlm.nih.gov/medlineplus/ency/article/003503.htm

"Why the Test is Performed
When the total CPK level is very high, it usually means there has been injury or stress to muscle tissue, the heart, or the brain.

Muscle tissue injury is most likely. When a muscle is damaged, CPK leaks into the bloodstream. Determining which specific form of CPK is high helps doctors determine which tissue has been damaged.

This test may be used to:

Diagnose heart attack
Evaluate cause of chest pain
Determine if or how badly a muscle is damaged
Detect dermatomyositis, polymyositis, and other muscle diseases
Tell the difference between malignant hyperthermia and postoperative infection
The pattern and timing of a rise or fall in CPK levels can be diagnostically significant, particularly if a heart attack is suspected."

BUT before you get too worried also read that serial venipunctures are important with this test (the last sentence in the quote above). Which probably means that a test can show high or low one time, for an unknown reason, and then the next tests will show 'no problems'.

Or as one site said: "However some prescription drugs and other substances can cause levels of CPK to increase"

So when you give your doctor a list of all meds, supplements or other substances that you take he'll be able to tell you if they are the reason for the elevated CPK.




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Avatar_m_tn
Thank you for the helpful responses. I am so anxious and worried today. I REALLY do not feel right and am hoping my doctor's can get to the bottom of this.
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Avatar_f_tn
Anxiety is normal when seeing a doc, of course -- and with Lyme disease in addition, anxiety is practically a given.  Lyme messes with the whole endocrine system and makes being calm and collected almost impossible.  (The Lyme bacteria use up magnesium in your body, and anxiety is a direct biochemical result of that deficiency.  That is fixable, however, by use of supplements, but we can get into that later if you are interested.)

If and how this may relate to CPK levels, I don't know.  If you would like to share more details with us, we can give you the benefit of our experiences and perhaps suggestions on how we would go ahead from here.

Keep us posted, okay?  Hang on!  --
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Avatar_m_tn
Thanks again! I will let you know what my lab results show, but I think results may take a couple of weeks! Something is definitely going on. I feel so out of control with my emotions and anxious and have been so forgetful. I was having a conversation with my husband and stopped to read something on the iPad and FORGOT I was in the middle of a conversation with hubby :-( my legs hurt so bad it is like I have been doing P90X every night for hours, but I haven't been!
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Avatar_f_tn
More about taking magnesium (Mg) supplements while waiting for your test results:   ... at reasonable levels, Mg can't hurt, from what I read, but if you do take it, be sure to tell the doc at the next appointment so s/he can factor that in to your symptoms.

I've read that any kind of Mg that ends in '-ate' is the easiest for the body to absorb:  magnesium malate, orotate, aspartate, citrate, etc.  I've used each of those, and my favorites are malate and another one that is a combo of citrate, aspartate and orotate -- the bottle says 'Magnesium CAO' -- I buy it online, not sure if it's in stores too.  I still take it even tho my Lyme is gone, and it really helps just general mood and resilience and thought process.  (I've also read that the way food is grown these days, there is not as much Mg in it, so deficiency is not uncommon.)  

I was never big on vitamins etc., but the Mg is amazing.  I told a (nonLyme) doc I was taking it and he got all huffy and said I would damage my kidneys (!) but I looked it up, and I'm only taking the recommended daily dose and have had no problems -- and I'm really sensitive to just about everything.  The doc was thinking megadoses, I guess.  Another doc told me 'if you get diarrhea, you're taking too much.' -- I never did, so all's well.  I still take the daily recommended dose.  And I sleep like a BABY.  

It does take the tests a while to come back .... let us know what the tests say (in detail) and what labs ran the results, because some labs and tests are better than others ... many of us here have learned that lesson the hard way.  

When I was first ill, I felt like I had the flu and a hangover at the same time ... 24/7, so don't be surprised if you do too.

Take care, we're here if you need to vent or freak out -- we've all done it!  ---------------------------------------------------------------
and a big PS:  when you get the test results, be sure to get hardcopy of ALL the results, not just a summary page.  Some docs just don't understand Lyme and read the tests as negative, where another doc might read them as positive.  Lyme is like Alice Through the Looking Glass -- the whole medical world is upside down.  

When you get the results, if you want to post the details here, we can tell you how we've learned to read them (thanks to our Lyme docs).  

It also matters what lab did the test, so include that too, as well as test results for any other infections the same ticks can carry that the doc may have thought to test for.
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