Mystery illness

I'm new here & trying figure out my "mystery illness". Had tons I mean tons of blood work. Been to 5 rheumatologists, 3 neurologists, infec. disease, fibro doc, primary doc. and a few in between.

What we do know...

Morphea on my back and upper arms very light
Prendisone does not help at all
Negative no bands at all with MDL and quest
.84 IgM .68 IgG Anaplasmas pagocytophilium ( .90-1.0 is equivocal )
C6 peptide negative but index showed .59 (range .91-1.10)
Way too many symptoms to list but a few are joint pain, severe muscles burning, skin stinginging, muscle twitching and spasms, horrible perriferal neuropathy.

I went to an llmd who did blood work and started me on antibiotics... I was already on Minocyline which was stopped because I developed severe pressure in my head and might be intarcanial hypertension which is side effect of mino. MRI of head negative, eye exam neg. Neurologist refuses lumbar puncture...I have had one month of severe head pressure and fever since starting mino. ( started mino for the morphea...road back.org)

I as so scared that the igenex results will be negative just like MDL was...
Where do I go if igenex will also be negative? Also does anyone think any of the values posted are of significants? I know lyme is based on symptoms.. But I need to see it on paper....

Also last summer went to Poconos, PA and slept in villa.…woke up with a weird bite not bullseye rash it looked more like a spider bite, very red, stung,and took a while to clear up.

My life has been put on hold. I break down daily and cry from this horrific pain!!
Went to a neurologist yesterday who feels I have fibro.... I just looked at her and asked does fibro cause morphea, or joint pain or sering pain in your ankles?lol

I am convinced fibro and CFS are made up so doctors can load a patient up with pain meds and antidepressans for conditions they can not diagnose.


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Post Edited (ela9050) : 6/19/2014 5:31:35 PM (GMT-6)

Sorry you're feeling so terrible! A lot of diagnoses are clinical - based on symptoms, so even if you have a negative test, the LLMD is qualified to diagnose whether or not you have Lyme disease.
So, what did the LLMD say - does he think you have Lyme disease?

When I read your first paragraph, it reminds me of myself - tons of blood work, and many doctor visits, including specialists...but you've beat my record - hands down! I've only been to 1 neurologist, 2 endocrinonlogists, and a physiatrist...on my way to an ENT.
I have just had my blood sample sent to Igenex and waiting results.

Many people who have Lyme disease get passed from doctor to doctor and have a multitude of symptoms.

You've taken the right steps - you've had blood sent to Igenex and you have a LLMD.

This forum is very supportive...many knowledgeable people on this forum to help and support you along the way.

If you haven't already, take a look at the thread at the top of the page 'New to Lyme" - lots of valuable information for you to read...including the detoxing. Detoxing is very important if you have Lyme disease (and can't hurt if you don't have it)

Good luck!

ela - regarding hesitation to treat for years without labs to back it up. Most people with Lyme disease do get a response within a few months or weeks - either you may start to feel better, or you may get a herx reaction.
But, I understand you wanting the "evidence" of Lyme disease...I am waiting for my results...and I'm praying that they are clearly positive...I think because there are so many people including docs that are saying no-way do I have Lyme disease ...it's not common in this area.

See what the lab results are, and talk to your LLMD about your concerns.
Remember - even if you start treatment with antibiotics, at any time you can stop. Or you can take them for a while...and then decide to do herbals.