Finally some proof

Well when I started my Lyme's journey in December I thought it would never end and I thought we would never figure out what I was actually going through. 14 different MD's and 20 MD visits over 4 months yielded nothing but a high cpk level and a rising crp level of which the MD's said could be normal of course.

Many nights of being up most of the night wondering if I would actually wake up the following day. All with negative test after negative test including 2 negative Elisa tests and a negative western blot test with0 positive bands and wondering if the MD's were right and I was just under to much stress.

After researching for months and coming to the conclusion that it was either lymphoma or Lyme's I found an llmd who managed to get me in within a week, bless his heart he even came in on his day off to see me as he was booked out 2 months. He said as most know here that the test are horrible for Lyme's and he was not even going to waste his time with more tests but he was going to treat clinically.

He diagnosed me with suspicion of Lyme's, Bartonella, and erlichia. All likely contracted in 2009 or prior. He started treatment right away and said if I wanted to have a positive result to put my mind at ease wait 2 months and than recheck, after almost a month I started to see some improvement and after 2 and a half months I felt much better compared to where I was in December. I have even found relief from things I didn't realize we're an issue until they subsided.

Anyway fast forward to today. I received a call from the MD's office that is treating me and upon recheck almost 3 months into treatment my western blot results came back CDC negative but where there were 0 positive bands before there is 4 now and since one is a Lyme's specific bands it is considered a positive by all Lyme's organization standards.

I don't have much hope that they will listen but have been surprised by some of the responses from the MD's that initially saw me when I try to use this as a teaching tool at our local hospital which is in a highly endemic area of southern Wisconsin. Hopefully my experience with this disease will help others not have to jump through as many hoops.

And at least some closure for my mind as well knowing the results. Hopefully others will take heart from knowing there is a light at the end albeit it is further the we wish for at times. And while I know that I have a long way to go yet the progress has been encouraging.

Thanks for all you guys who listened and posted when I was not sure what was going on and hopefully I can pay it forward by spreading the message that there is hope in feeling well again.

Thanks,
Nick

Nick,

Thank you so much for sharing this. There are so many who feel like they are in limbo. Having symptoms of Lyme, but not having the proof. This lets them know that in time the proof may be there. And that it is ok to treat without the positive test.

I am so glad you have found some healing through treatment. It sounds like you have a wonderful LLMD! Perhaps, sometime you could share your treatment so it could help others. Often we have to try many different things because not everything works the same for everyone.

Could you Email me with your LLMD's name? I live in Iowa. We do not have any LLMD's that I know of in our state so all the people I know with Lyme have to go out of state for treatment. I am often asked for the names of competent people that treat Lyme in Wisconsin and this would be one more I could recommend.

Thanks again!

Denise K

Nick, thanks for coming back and sharing your good news. I am so happy you are on your way to wellness.

It breaks my heart when I hear of people not in treatment and I just feel in my gut they have lyme but their tests say, no.

I was one of those.

Happy healing and spreading the word.

Yehaw! awesome news Nick! You are on the road to reclaiming your wholeness/wellness with a competent guide, and bless you for your thought to be an educator - I haven't bothered with that, but perhaps I ought to!

Your story sound like mine. High CPK 3179. Heard everything form muscle diseases to mitochondrial disease. 17 K later sick and depressed with a pile of examens from muscles biopsy to Mris Dr google saved me.... God bless the internet!!!

Yell it from the mountain...the mosquitos can spread it from dairy cows and jm not sure pasturization kills it ..my dad a cheese head with 40 yr of cfs from "mono" we just fojnd spirochettes in his blood...its in9 of 10 people here ...btw n berg you can see them plain as day under 1000 x