Lyme disease, stress, what is it!? Who has the guts to answer this?

[Hope75]

2.5 years of painful burning peripheral neuropathy, fatigue, fasciculations and several neurologists later, I find myself with a "probable Lyme" diagnosis.  Positive ELISA for Lyme at Johns Hopkins followed by a negative Western Blot.  Now, my neuro ordered a WB from Igenex and it IS CDC positive on the IgM portion to incl. bands 39, 41 and 58.  IgG was positive for 39 and indeterminate on 41.  My symptoms wax and wane every 6-8 mo., but never fully subside.

3 ticks were embedded in my scalp 20 yrs ago that resulted in lumps all over my head - don't make your judgement yet - and then I put in a pool and was walking around the back yard a great deal in Aug 06, when all these symptoms started.  I have been tested (all negative) for everything under the sun!  No, I don't live in an "endemic" region, but ask ANY veterenarian how many cases of Lyme in dogs have they had in any state and they will answer that it has happened.  Ticks do not know what state lines are!  These dogs weren't shipped into the state either, so there is your answer.

I have one lesion on the corpus callosum, non-enhancing, been there for about 6yrs, at least.  Had my last MRI Tuesday w/ and w/o contrast to see if anything new and fun pops up.

Given all that info., on which I could write a book, I know all too much now about this little Lyme disease controversy and, quite frankly, I'm skeptical too - but there are people - thousands of people, out there with issues after a tick bite or just a positive test and even some without positive tests!  They truly get better with long term antibiotic treatment.  What gives?!  I'm have a healthy skepticism re:my own diagnosis, but I also see proof and see the nasty things that can happen in health care and gov't issues (ie the Tuskegee incident!).  It is a very valid issue that needs attention from the medical community.  By the way, I had a trial of doxycycline and got even sicker.  Herxheimer reaction?  Very compelling, sorry...

So, does any doc have the cajones to answer this?  Objectively?  Isn't a spirochete such as this, like syphilis, capable of making someone sick for a very long time?  Syphilis does...

[CheeserNurse]

I'm curious, did you have the classic 'bullseye' rash anywhere on your body which is indicative of Lyme disease? I really am not sure what it is, I'm going thru similar issues, suspecting MS due to my symptoms and my MRI images, along with the clinical assessment, but so many neurologists seem so scared or hesitant to make the Dx...I had all the blood tests to try and rule out MS...lyme, lupus, vit. b12, etc. Hang in there!

[Hope75]

Hi!  Nope, no bullseye rash that I know of, but if it can hang out for several years - I had ticks on my head and you couldn't see a rash, if it were on your scalp.  I had a bunch of lumps, however.  

Yes, most doctors are scared to make the Dx....because of the controversy/politics surrounding the disease.  That is why my post is somewhat daring a doc to answer.  They don't want anything to do with it!  It's ridiculous.  They have good reason to be scared - just google Dr. Jemsek.  His license was suspended in NC for treating Lyme patients with long term abx.  But, I think more docs should remember the oath they took and take a stance on this subject - perhaps think outside the box, at least.

Check us out on the Lyme forum, we are all welcoming:)  A good book to read:  "The Cure Unknown".  A good documentary to see: " Under Our Skin."  

Do you have lesions on MRI?  I was in the MS limbo as well.  It doesn't fit and is a diagnosis of exclusion.  So far, I cannot exclude Lyme.  Keep in mind that the nymph stage ticks are as small as poppy seeds and not all patients exhibit the rash.  You may never know you were bit.

The best thing to do is get a doc that is willing to sign off on Igenex Western Blot testing.  It is the only lab that seems reputable in Lyme diagnosis.  Of course, the other camp will say it is the only lab that is not reputable, so be prepared for a roller coaster ride!  I had a positive ELISA at Johns Hopkins and their WB was negative.  I payed the Igenex lab $475 to see what their WB would turn up - and I am CDC positive.  Some say that's a dead ringer, some say that Igenex is making $ off of sick people who are just wanting a diagnosis other than fibromyalgia/CFS, MS, etc.  I say, it's worth the chance.

Take care and keep in touch!!