Lyme/High Creatine Kinase?

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saxmar
Veteran Member


Date Joined Feb 2007
Total Posts : 668
   Posted 12/1/2009 7:52 AM (GMT -6)   
I had high Liver enzymes on a blood test about 2 months ago.  Probably due to meds (Biaxin, Spectracef, plaquenil, celebrex, neurontin, crestor, plavix). I upped the amount of Milk Thistle and the Liver enzymes came down but still higher than normal. However the latest test showed my Creatine Kinase was 100 points above normal.  Anyone have high Creatine Kinase that was caused or due to Lyme?

mrseve
Regular Member


Date Joined May 2011
Total Posts : 27
   Posted 5/24/2011 11:40 AM (GMT -6)   
Hi saxmar,

Im an undiagnosed Lymie, have been for the last 5yrs. I'm in the process of trying to get the docs to take me seriously. For full story, take a look at my post; Lyme or not lyme, that is the question - www.healingwell.com/community/default.aspx?f=30&m=2111117
I'm not currently been treated. I had some routine bloods taken about 3 months ago, my CK reading was 700+ it was re-tested 2 weeks later 370+ and then again in april, still high at 370+
I've also been wondering if this is a cause of Lyme?

Creatine Kinase is produced by your muscles, its common for an athlete or body builder to have massive amounts of CK, its a protein released by damaged muscles. There are 3 main sources, Brain, heart and skeletal muscle. The fact that mine is high, leads me to believe that the Lyme is attacking my muscles, more so my heart(getting mega pulpitations)and is producing my CK reading. Trying to convince my docs of this, but its falling on deaf ears.

Can't be sure, but I have many coincidences, and evidence and symptoms that is seriously pointing to Lyme.

Don't forget to read my other post.

Hope that's helped.

Post Edited By Moderator (Traveler) : 5/24/2011 11:58:16 AM (GMT-6)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 21059
   Posted 5/24/2011 11:58 AM (GMT -6)   
Mrseve,
I just wanted to let you know that all I did was put in a hyperlink to your first post, so that others can find it easier.
Trav
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, which makes long paragraphs very hard to read.

mrseve
Regular Member


Date Joined May 2011
Total Posts : 27
   Posted 5/24/2011 1:08 PM (GMT -6)   
Thanks trav,

Keep up the good work.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 21059
   Posted 5/24/2011 1:18 PM (GMT -6)   
As long as I can, Mrseve, as long as I can!!! ;-)
Thanks!
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, which makes long paragraphs very hard to read.

sallyup
New Member


Date Joined Jun 2011
Total Posts : 1
   Posted 6/30/2011 3:25 PM (GMT -6)   
I've been looking at different creatines and I'm pretty set on getting bsn no xplode creatine but I haven't gotten any opinion from anyone yet which is why I am asking, what are your opinions on this?

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 21059
   Posted 6/30/2011 4:32 PM (GMT -6)   
Oops! blush So sorry! I should have explained that this is a post from 2009 and I haven't seen Saxmar in a long time. Hopefully someone with some knowledge about this will be along shortly!


Hi Sallyup!!
Welcome to our forum!! Do you or someone you know have or have had any tick-borne infections? How long ago were you infected? Maybe you could tell us a little bit about yourself?

I'm sure you will find us to be a caring, helpful and understanding group!
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, which makes long paragraphs very hard to read.

suzieq7
New Member


Date Joined Feb 2015
Total Posts : 7
   Posted 2/8/2015 8:05 AM (GMT -6)   
Its been quite some time since anyone has posted regarding Lyme disease and high cpk so I'm wondering if anyone is still interested in talking more about this subject.

I have been sick since 1993 with peculiar symptoms finally getting diagnosed in 2005 with Lyme disease. I was also diagnosed with Dermatomyositis in April of 2014 after new symptoms and a high cpk.

I would love to talk to someone who has similar issues. I see a lyme literate physician and also a doctor for my Dermatomyositis.

Thank you....

quilty
Regular Member


Date Joined Mar 2014
Total Posts : 86
   Posted 2/8/2015 8:40 AM (GMT -6)   
I too have high ck currently 292 I test ck every month.
Susieq , I was dx with polymyostis in 2013 and put on high dose prednisone. I weaned myself off it jan 2014. Dreadful exp. tested positive for Lyme apr 2014 and blamed high ck/muscle wasting/severe weight loss on lyme. Treatiedwith Cowden, currently Buhner.
My fam Dr, after 3 years decided she was really worried about me lol., referred me t o chronic disease dr who has done tests galore. Seems they want to send me to yet another rheumatologist as they again think I have myositis. I know that this will lead to a script for prednisone (and I will not let this happen). That steroid plays with your mind, turns you into a monster.
I would like to hear, are you treating you dermatomyostis with steroids?
My understanding is that these are not good for Lyme.

quilty
Regular Member


Date Joined Mar 2014
Total Posts : 86
   Posted 2/8/2015 8:46 AM (GMT -6)   
Sorry should have added live in Canada, Drs do not recognize my Igenix pos. test so they will not take Lyme into the equation.
Surely the Lyme will cause all of the same issues as the myositis. Should we even consider the myositis dx.

suzieq7
New Member


Date Joined Feb 2015
Total Posts : 7
   Posted 2/8/2015 9:19 AM (GMT -6)   
quilty....My cpk is 271 now on its way back up. a few months ago it was 500. I always know when its high as I have extreme muscle weakness. I see lyme literate physicians and they both say that my symptoms are Dermatomyositis. They both also agree that Lyme causes myositis. I have been sick since 1993 beginning with kidney failure and it took me til 2005 to get diagnosed with Lyme. In September of '13 I started having trouble swallowing, broke out with a horrible eye rash which encircled my eyes with purple eyelids etc, it was so painful, also extreme weakness in the muscles along with hot spots and an itchy spot on my back. After going to a ton of doctors I was finally diagnosed with Dermatomyositis. I did treat against my one LLMD's advice to treat with Prednisone as my Rheumy scared me into it. Told me if I didn't take this disease serious I would die. It did help my symptoms but did horrible things to my lyme. They also put me on Methotrexate. It hasn't done anything for me. I just skipped my dose of it yesterday and I am staying off of it. My lyme is out of control. I saw my Lyme dr last week and I am starting back on my full course of lyme treatment including doxy, mepron etc. I have coinfections as well. I am so ill with my lyme right now. My cpk level is now going high again. Its so frustrating as I can't find a rheumy that believes in chronic lyme and so they don't want me in lyme treatment. On the other hand I can't ignore the fact that I have lyme disease. I wish I could find a dr to treat everything. It is really hard when your sick and no one wants to help. They have done studies that prove that lyme disease causes Dermatomyositis and others. That's where my lyme dr says it came from. My lyme doctor wants me on a low dose 10 mg of prednisone, that's it. He thinks if I stay at a lose dose it may help my Dermatomyositis and also not make my lyme worse. Steroids are horrible for lyme. I have no choice I am going to have to go back on low dose steroids.

suzieq7
New Member


Date Joined Feb 2015
Total Posts : 7
   Posted 2/8/2015 9:29 AM (GMT -6)   
I get my cpk level done monthly as well. I currently have an appointment at the Cleveland clinic for my Dermatomyositis. My primary dr wants me to go there to discuss both my diseases but I found out recently that Cleveland clinic doesn't believe in chronic lyme. go figure...now what to do...

quilty
Regular Member


Date Joined Mar 2014
Total Posts : 86
   Posted 2/8/2015 12:14 PM (GMT -6)   
Susieq sorry to hear all that you have been through. I only wish I knew the answer to your question - what now.
My understanding of myositis is that of a description (many aching muscles). It is not a diagnosis. Drs who label us with myositis want only to treat the symptom, they are not interested in finding the cause. Hence the bandaid - prednisone. They have no idea what causes the myositis. Most Drs (and I generalise) (personal opinion)
don't seem to want to be healers anymore, just glorified salespeople for big pharma's drugs.
Personally, I have decided no more prednisone. I will continue to treat lyme with herbals and hope eventually that by putting my lyme into remission, I will also take care of "the many aching muscles" and my mobility problems.
I am so thankful for my LLND,who is currently with Dr K in Seattle. He has been my lifesaver. I look forward to his return next week, hopefully, he will bring back lots of new info. I read Dr k's website
frequently. He is so knowledgeable.
Please do post again and let us know how you fare on the low dose steroid. Are you on any forums for DM?

lymedisease1
Regular Member


Date Joined Jan 2015
Total Posts : 132
   Posted 2/8/2015 12:53 PM (GMT -6)   
suzieq7 said...
I get my cpk level done monthly as well. I currently have an appointment at the Cleveland clinic for my Dermatomyositis. My primary dr wants me to go there to discuss both my diseases but I found out recently that Cleveland clinic doesn't believe in chronic lyme. go figure...now what to do...

will they believe that the clinical tests. You can thank the CDC for setting the guidelines for lyme treatment.

suzieq7
New Member


Date Joined Feb 2015
Total Posts : 7
   Posted 2/8/2015 8:57 PM (GMT -6)   
quilty, My lyme doctor said that the lyme spirochete caused my myositis. You are right the only treatment for it is steroids and immunosuppressants. I do not want to go back on Prednisone but it did help my levels get under control. As long as I was on low dose it didn't affect my lyme but now that I am on Methotrexate my lyme is out of control again along with my Babesia and Bartonella. I'm not feeling well and I don't feel like the Methotrexate has done anything for me so I am going off. I'm treating my lyme. No, I'm not on any forums for the DM. I will have to look in to them. Thank you :)

suzieq7
New Member


Date Joined Feb 2015
Total Posts : 7
   Posted 2/8/2015 8:58 PM (GMT -6)   
Oh Yeah lymedisease1, you gotta love the CDC for their standards. Ridiculous!! Because of them we are having to pay for a lot of our treatment as insurance doesn't cover a lot.

DLD23
New Member


Date Joined Apr 2015
Total Posts : 1
   Posted 4/15/2015 10:28 AM (GMT -6)   
I also am suffering with elevated CK levels and a positive lyme result from Igenix. My lyme doctor thinks I have lyme and my rheumatologist thinks I have fibromyalgia and they can't come to an agreement. I suffer from stiffness, muscle pain and joint pain. I know when my CK gets high, I can feel it. Steroids really affect me poorly so I refuse to take them unless absolutely necessary. Maybe will try naturopath again. Came away with so much medication at such an expense I was taking meds all day long! Wish there was a simple answer. Maybe healing the gut and building up the immune system is all we need.

FlyerLover
New Member


Date Joined Aug 2015
Total Posts : 4
   Posted 8/20/2015 10:23 PM (GMT -6)   
Hello to you all!

It is so comforting to find other in the predicament I am also in. I have been diagnosed with Lyme and found a great LLD. AFTER I was diagnosed, I developed symptoms consistent with Dermatomyositis. I also refuse to take steroids at this point. Lucky for me I have had little muscle weakness (at least I think so) and just a rash that is only raging when I am in the sun. I am taking the wait and see approach and continuing my 2nd course of Antibiotics. LLD said as long as I continue to feel better (every slight improvement) he will continue with Doxy. IF I do not improve, he'll switch to another Antibiotic. During all of this he is running a TON of antibody test specific for DM. So I feel like I am doing all I can. My plan is IF I don't continue to improve (which I feel I have two 1/2 weeks into a 4 week course) we'll see where those blood results land. IF I have some antibodies, the LLD or my reg Doc will order a MRI of my muscles to see if they can identify any clinical weakness. IF they can, they'll take a hunk of muscle. YOU CAN ask for them to test for the spirochete in the muscle. That is proof that the muscle is being destroyed because of Lyme! I saw that in some clinical data on patients with Lyme & DM. So I feel like I can get to the bottom of this one way or the other without having to compromise my health and take steroids; which in contraindicated with Lyme. I hope for all of you that you are able to, at least, get a muscle biopsy and ask for testing to determine if that nasty bug is in your muscles. I'd be happy to continue the discussion as well and keep you all informed of how these next few weeks go! Thank you for reading!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 6078
   Posted 8/21/2015 12:20 PM (GMT -6)   
Hi FlyerLover - welcome to our community! This is a great group of people...lots of support and knowledge here.

That is good that you have rejected the steroids for your skin condition.

You do need to treat for a couple of months AFTER you are symptom free. (Not sure if you know that...)


I'm not sure if I would have the muscle biopsy done...that's an invasive test. You've already been diagnosed with LD and are improving on the antibiotics...so why not just continue to treat.

Your muscles could be weak because of lyme/bartonella affecting your nerves. I have nervous system involvement...and that is most likely the cause of my muscle weakness. In that case, the muscle biopsy probably won't show that.

I have symptoms consistent with lyme disease, along with a Positive Western Blot from Igenex, I don't need a muscle biopsy to prove I have LD.

Please take a look at the "New to Lyme?..Start Here!" thread at the top of the page...it's packed full of great information...symptom lists, info on probiotics, detox suggestions, and much more.

I hope you keep coming back here to read, post, ask questions. That's what we're here for!
Moderator, Lyme Forum
Symptoms started April/13; Buhner's protocol May 15/14 to July24/14
Igenex pos. July 3/14 Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14
Amox 1000mg x3 + Probencid Aug. 29/14; added biaxin 500X2 Sept. 26/14
Disc. amox and added Ceftin Nov. 20th. Jan/15 pulsing Tindamax ; disc biaxin
Buhners bart herbs added Dec/14; ABX/Buhner herb break Apr/2015

FlyerLover
New Member


Date Joined Aug 2015
Total Posts : 4
   Posted 8/21/2015 12:49 PM (GMT -6)   
Hi Girlie,

Tks for your reply!

I was referring to getting the muscle biopsy as it relates to Dermatomyositis and ONLY if I don't continue making progress on AB (Lyme doc said it should be continually getting better; even if only slightly) AND/OR if my antibody testing comes back positive for DM. Otherwise, no - I would not get such an invasive test. The biopsy was not to prove Lyme but to confirm a DM diagnosis; consider the "gold standard" in DM diagnostics. I already have a positive Lyme test - that's enough to prove Lyme.

Ultimately, IF I don't feel better over time this would be about ruling out DM and whether DM is driving these symptoms or Lyme is.

I do know that Lyme can mimic all those muscle issues and then some. It's a tricky bugger!

I did read New to Lyme Forum postings. Interesting info there - I got a body brush because of those posts! ;)

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 21059
   Posted 8/21/2015 3:32 PM (GMT -6)   
Hi FlyerLover!
Welcome to our community!! I'm so glad you joined!!

You should also be aware that Doxy alone encourages the Lyme bacteria to go into it's cystic form, which will stop your healing progress as well. I would suggest a change in abx before you have that muscle biopsy done if/when symptoms seem to quit resolving.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!

FlyerLover
New Member


Date Joined Aug 2015
Total Posts : 4
   Posted 8/21/2015 7:50 PM (GMT -6)   
Traveler,
Thank you for that info. My LLD said something about cysts but I didn't pay much attention. I will address it with him when I speak to him in two weeks.
He did say that he would switch to another ab if I don't continue to make progress. I would def do that before giving up.
However, I am having some breathing issues and recent echo showed some lung pressure abnormalities so I can't put this process off too long.
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