Lyme/High Creatine Kinase?

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,
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

As long as I can, Mrseve, as long as I can!!! ;-)
Thanks!

Oops! 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!

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....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.

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?

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 :)

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.

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!

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.