Lyme Disease Support Group

My name is tom, just retired from the Air Force after 30 years, 50YO male

Here is my story as of today Im awaiting test results from CD-57

50 year old male , I am suffering from RA...So they tell me!!!!!

Back in August my whole body started locking up...My hips, knees , shoulders , so bad my wife had to dress me in the morning...I even had a rash on my legs and linear rash arms, ...

My legs and Hamstrings were so weak I fell down in my garage twice...It wasn’t form pain it was from weakness. I had red spots on both of my thighs, they didn’t itch they were just there...I was baffled that I go from 100 miles an hour to zero in a month...

Keep in mind that I had some bites red marks on my belly after a a camping trip Oregon in August 2011...didn’t seem like mosquito's but it took a week for the symptoms went away...

After I couldn’t function on my own, keep in mind this was just this past November...My doc gave me steroids for relief until they could find out something...

EVERYTHING went away I was flying high, thought I was fixed...On the second to last day of my roids, my body locked up again...the rash went away from my legs and then appeared on my arms in the pic I posted...

I was checked for

Blood work for infections

Checked for Lyme (early onset of symptoms) Elisa Test

Checked for West Nile

Checked for Lupus

Checked for all kinds of tissue and Bone cancer

Full body Bone scan

MRI of C-Spine , brain and lumbar

Neurologist for a muscle and nerve disease

Went to a dermatologist had biopsy on the rash, came back as reaction to anti-inflammatory meds (I wasn’t Taking anti imflamatories at the time)

Thyroid was checked and checked again as I have Hypothyroidism, I do take synthroidAlso had MRI for MS (negative)

ALL NORMAL OR NEGITIVE!!!

RA was checked came back positive +14, not that big of deal right???

ANTI CCP was checked, came back greater than > 250, RA doc that’s positive for RA, She said that this test is very accurate

I have read that Lyme will also make these levels high!!!!

I go from shooting 70# bows every day to barely being able to shoot 40# bow,

My arms feel like they are going to fall out of the shoulder sockets, my knees feel swollen, but they don’t look like it, My forearms are sore, the bottom of my feet are sore...I still have a slight rash on my left rib cage

I am so weak I can barely pick my body weight off the floor.

Now my middle back feels swollen, like it’s in my spine...really weird

I’m not going to lie to you guys Im scared, I feel that all these docs are missing something...

How can I get RA that fast with no warning signs...None of my Joints hurt to the touch or are red or are deformed ...

I’m on my 10th dose of Methotrexate with no sign of relief (it isn’t working)...They only thing that gives me relief if MOBIC and some pain med that is called TRAMADOL (ULTRAM)...

It makes me feel real good...But I don’t like that feeling , if you get my drift

I’m tired weak and sore, I don’t think I have RA, I can’t get any of my doctors to check me for Lyme again....

I was checked for Lyme with a standard Elisa test it was negative but as I learn that test is not accurate

I’m am tied to Military Tri Care Insurance, (Retired Air Force 30 Years Sept 2010) and I cant go anywhere I want because I can’t afford to pay for all these tests myself...(We have to be referred by our primary care doc to go outside of his treatment)

Something isn’t right, I’m only 50, and I’m supposed to take care of my family not the other way around..

.I have never been weak, Used to be competitive power lifter and bodybuilder, never had a bad joint , or broken bone, except ruptured disk between L4-L5....

I dont know how RA is supposed to feel, am I supposed to be weak, or just sore...no one can tell me...

All I know is my muscles and joints are stiff like rigor and ache, my knees and shoulders are the worst and my legs feel like they are locked up all the way down my shins,

my muscles twitch all over my body and face at times , the soles of my feet are sore all the time..

Keep in mind there are NO LYME EXPERTS in Idaho, so Im told...

Once all my docs saw that my CCP was elevated they stopped looking, said that is/was RA...I’m not convinced. Treating me for RA when I have about 17 or more of the tell-tale signs of Lyme

I am not giving up until Lyme experts tells me I dont have it...I just have to find one

Enclosed is the linear rash I had on my arms, A symptom of Lyme

After no relief with the Methotrexate , I finally talked my primary care doctor to give me a test CALLED CD57 , I had this done yesterday !!!

fixed link; when we copy them, it adds SPACES we don' want! bettyg, leader

http://www.healthcentersofamerica.com/information.cfm? id=144

I wanted the Western Blot , but no one will do that unless the Elisa test comes back positive

I’m actually praying that they find something because they told me they won’t give me antibiotics until they find something...

What happened to treating the symptoms , not the tests

I did go to my Dermatologist Saturday and showed him the whole package and evidence, he finally decided to prescribe me some antibiotics minocycline …

I don’t know if I should start taking it until the CD-57 test comes back…what’s the worst that can happen, upset stomach and diarrhea??

Here is a link to a packet that helped me convince my doc to finally do another test...Please use it it might help you

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Wish me luck!!

Look forward to sharing with you folks

Tom

Post edited by: Bettyg, at: 04/18/2012 11:19 AM

Post edited by: Bettyg, at: 04/18/2012 11:20 AM

welcome! if you didn't copy/paste this to your PROFILE, top left corner, may i suggest you do so. we use this info later one when you post about thigns to help you.

thanks; bettyg, leader