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Bizarre symptoms...Lyme?

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Posted 12/19/2016 7:03 PM (GMT -5)
Getting slightly desperate to figure this out. On July 19th the backs of both of my legs started to ache, really bad, like I'd worked out for hours. The next day it migrated up to my hips and groin, then my upper back and finally my forearms. It was so bad that I couldn't zip up a coat, no strength I need my hands. They tested for Lyme, and said it was negative.

The two numbers that were high were my CPK (1276) and my sed rate (36). They assumed it was a virus but it stuck around for a couple months. Each day was a mystery regarding where it would hurt. Finally, in early October, I didn't feel much of anything. That remained the case until December 15. That day I was sore in my legs again. CPk was back up to 411 and sed rate was 32.


Doctor is sort of at a loss for what it is. Many have told me to be rechecked for Lyme disease. Does this sound like ANYTHING anyone has ever heard of?
Posted 12/19/2016 7:50 PM (GMT -5)
Welcome to the forum. I'm so sorry that you are here, but I'm glad you found us. We ask new members to read our first thread New To Lyme?... Start Here! It is full of great information, symptom lists, helpful links, etc. You will find a list of possible detoxing methods here: www.tiredoflyme.com/detox-methods.html

As for your symptoms- we are all so different and we all get a variety of symptoms. And what is horrible is that a symptom will go away and another will come.

Which test did you do and did you get a copy of your test results?

Do you have a Lyme literate doctor?

You can email the Tick-Borne Disease Alliance at medicalinfo@tbdalliance.org for LLMD referrals and you can go to tbdalliance.org to learn more about these infections.

You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

Again welcome and others will be along to help.
Posted 12/19/2016 8:18 PM (GMT -5)
Hi B.L. Lippert - welcome to our community.

Tests for Lyme disease are not very reliable/accurate.
But some labs are better than others.

One lab you might want to look into is Igenex Lab in California. They specialize in testing for tick-borne diseases. That's all they test for.

You can call them and order a test kit. Do you have a Dr. who would be willing to sign the lab req?
The Lyme Western blot IgM and IgG costs $210 for both tests.

Krimpet included links - if you want to get a Lyme Literate Dr. and schedule an appointment for an evaluation.
It can take several weeks to months to get an appt...so you could do the testing while you wait for the appt. and bring your results to your first appt.

If you change your mind, you can always cancel the appt.
Posted 12/19/2016 8:19 PM (GMT -5)
Forgot the link to Igenex website

www.igenex.com/Website/
Posted 12/19/2016 8:27 PM (GMT -5)
Welcome ...dna connexions is a test that can be ordered without a doctor ...with inflammation that high something is causing it ...could be bartonella ...if onlyba few bands showed up on test they will tell you its negative ...mine was positive and infectious disease doc said it was a false positive so he wouldnt have to treat ...dr david martz tested negative 4 times then did antibiotics and got a positive test ......

god speed ...if it doesnt make sense its lyme
Posted 12/20/2016 9:15 AM (GMT -5)
Thanks for the input. Very frustrating.
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