posted
I was diagnosed with Lyme in February. Positive Igenex, Quest WB, and one band on mayo western blot. I had gone 7 months without a diagnosis and had every symptom you see on Lyme Specialists' checklists and also developed a lot of muscle damage. Had a CPK level of 12,000. Does anyone know if muscle damage is common with Lyme?
Posts: 31 | From Boston, MA | Registered: Jan 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had extreme muscle weakness from lyme, babesiosis, and bartonella.
I got rid of all my symptoms with good lyme treatment. It has been 4 years now since I finished my treatment, and I am enjoying my life--the same life I had before lyme disease.
When I was sick, my legs shook like jello when I walked down steps, I dreaded having to rise up from a chair or step up a curb, I couldn't hold my mouth open to have me teeth cleaned, and my arms were too weak to hold the phone up to my head so I could only talk on the phone for about a minute. I couldn't stand very long or walk very far.
Is this what you mean? How do you know you have muscle damage? What is CPK level of 12,000?
Extreme muscle weakness is a common lyme symptom.
Look at the following document for a good list of lyme disease symptoms--pages 9-11:
These are the Burrascano lyme treatment guidelines--probably the best document on lyme disease you will ever read. Suggest you become very, very familiar with it since you have lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks TF. CPK is a blood test that reads the amount muscle ezymes in your body. muscle enzymes exist when there is muscle damage because it is used to repair the muscle. So, the higher the reading, the more muscle damage. I think a normal reading is 100-300 (I think). So 12,000 shows I had a TON of muscle damage.
That is fantastic you are doing so well now! I am curious. How long did you go undiagnosed, how long was your treatment, and what treatment did you use? Feel free to Private Message me if that is better.
I have 2 months of treatment under my belt. Azythromycin, Plaquenil, Probenecid, Omnicef, Cortef (steroid), and fluconazole plus a billion herbs and suplements. 3 weeks ago I stopped the Omnicef and Probenecid and have started Bicillin Injections. I have noticed some improvements but overall dealing with a lot of the same stuff, esp fatigue.
Posts: 31 | From Boston, MA | Registered: Jan 2009
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You need IV fluids to flush out your kidneys to prevent Kidney damage with a level that high.
Posts: 261 | From Piedmont | Registered: May 2008
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I never went on IV fluids. My many, many doctors attributed it to a viral myositis (this is before I saw a lyme specialist). It normalized by itself over the course of a month (back in October). But I can still tell that my muscles are incredibly weak. I exerted them slightly over the weekend and am now on crutches. ugh... I believe routine kidney tests were done and showed normal kidney function.
Posts: 31 | From Boston, MA | Registered: Jan 2009
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posted
Thanks! My legs did feel incredibly numb. not any more. They definately shake and burn like I exercised too much. After this weekend, it feels like I pulled/strained both of my quads. I can't even walk... frustrating! I feel like I'm walking like an 80 year old man. even then, I think an 80 year year old man would beat me in race.
Posts: 31 | From Boston, MA | Registered: Jan 2009
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posted
Hi, Also when I go shopping, then leave the cart I have been flopped over to get through these humongous stores. I am at my car door, Just crumble, not pretty. Always hope no 1 is looking but legs just give out.
Yrs. ago rhume said did not like what she saw with muscles, I was jock & almost over muscular.
No 1 has addressed since even thought finally got 2 mo. of IV Rocephin do not have much change still in Pain & exhausted. Hugggsss, to all in need, Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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posted
i have LOTS of muscle pain and labs showed abnormally LOW CPK but with elevated Myoglobin.
Odd combo for me. dr's confused, i am confused. the results contradict themselves.
like you, i have one lab showing muscle loss then CPK low instead of high, as would be expected. no one able to explain it yet. and have tons of muscle pain. some of the pain to larger muscles has gotten better with babs tx
am having muscle wasting, i was working out until feb. had port put in and have not been able to do cardio anymore since that. knocked me on my behind. now just walk, do stretches. yoga out as balance and NMH.
just part of lyme and co's i guess. likes to get into lg muscles to live/grow and uses our cellular energy to do so.
still have pain is huge symtpom, and better some with upped meds-- and on a TON of meds that would probably put a horse down and i still hurt.
can tell u in my case, we think dx goes back at least 11 yrs. possible longer. now hubby tested +, and mother in law awaiting testing. may go back generation
our kids are next on list for testing and very concerned for our oldest.
i think the muscle loss, nerve and brain damage there will be residual damage in my case. i cant see how all this could be undone. just hoping more to halt further damage. still so much we dont know and the science is too far behind
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I hope you've seriously considered mitochondrial/metabolic myopathies and had a serious work-up with that CPK level. Lyme may not be your major issue. That's a prime indicator of mito diseases. I'm not saying it's not Lyme, but don't believe all is. Good luck and I'm sorry you're having these issues to begin with.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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jt345
Unregistered
posted
Hi I lost alot of muscule on my left side ,which has not came back.
Some of my Doctors feel it could of been caused by a small stroke,seeing as how I have lessions on my right and left temperal lobe. appeleed
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I had my CPK checked too when I first became symptomatic but before figuring out it was tick-borne diseases. Despite muscle weakness and pain which I still have years into treatment, my CPK was normal.
Are you on a statin (cholesterol-lowering) drug? In rare cases they can cause muscle damage and affect the CPK.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Good luck and I'm sorry you're having these issues to begin with.
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