This is topic Has anyone FINALLY been properly diagnosed after many years?? in forum Medical Questions at LymeNet Flash.


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Posted by windowlite (Member # 26620) on :
 
Hi Everyone!

I'm new here today, and have been looking for an answer for 20 yrs.. Was diagnosed with Fibromyalgia after a Western blot showed negative.

Around 1990 I got a large over rash on my side, with smaller red rashes on my midrift area. The Derma. doc said it was contact dermatitis.

A couple years later, after having gotten symptoms of severe fatigue, stiffness, pain and fogginess - I went to an infectious disease specialist for Lyme testing, but who did the tests and said I was negative so sent me to a Rheumatologist who diagnosed me with FMS.

A year or so later, I went to a doc because of another problem and was put on a 2 week dose of Penicillin. After a while on it, I noticed a wonderful new energy and 'normal' feeling! The fatigue and brain fog had lifted (but came back soon after).

In about 1995, I heard a holistic doc on WOR radio say that half the time you don't get a bullseye, but some people can get multiple rashes - and they can be oval - not round. He also spoke about how inaccurate the Western Blot can be.

That gave me a whole new passion for discovering a new test and FINALLY getting a proper diagnosis, because my symptoms are dibilitating and even if I can't be helped at this point - I would STILL like an ANSWER to what 'this' is .. if it's REALLY "LYME" !!

Is there anyone in the Central Jersey area who found a creative doc who figured out a way to test to get a POSITIVE Lyme test after many years of frustration ??

Thanks very much for any help possible !! [Smile]
 
Posted by daniella (Member # 6753) on :
 
yes I was properly diagnosed after more than 20 years of being incorreclty diagnosed. Never give up!


Daniella
 
Posted by daniella (Member # 6753) on :
 
double post
 
Posted by lymeinhell (Member # 4622) on :
 
Yes. Took me 10 years.

You really need to go see an LLMD (Lyme Literate Medical Dr). Put a post under 'Seeking a Doctor' section, with the state in the subject line.

Read enough on this site, and you will find your life story repeated over and over again here as others tell of their experience. Most of us have been through what you have (myself included), and it is possible to feel 'normal' again.
 
Posted by joalo (Member # 12752) on :
 
I was misdiagnosed with fibromyalgia for twenty years. Your story sounds a lot like mine. See below...
 
Posted by windowlite (Member # 26620) on :
 
Wow!! I'm glad you finally got an 'answer' !! Thanks for the encouragement.

Can you tell me what kind of test finally gave you the positive reading? Did you do an antibiotic challenge before the test... and what - if any drugs helped eleviate your symptoms?

Best !!

window*
 
Posted by TF (Member # 14183) on :
 
I was finally diagnosed with lyme disease after suffering with it for 10 years.

Since none of the lyme tests are that accurate, a good lyme doctor diagnoses you based on symptoms and history like what you have told us. You don't NEED a positive test to be treated by a good lyme doc. A good one knows to treat you based on your symptoms, since many people never get a positive test.

Call the lyme support groups in your state (see left side of page, Support Groups) to find a good doctor. You can also post under "Seeking a Doctor."

I went through 2 other lyme doctors who didn't know enough to get me well before I found a doc with enough expertise to get rid of this disease for me. After 1 year of treatment with him, my diseases were gone! That can be you too, but the doc is the key.

It has now been over 5 years since I completed my lyme treatment and I am still symptom-free, enjoying my life.

I strongly suggest you read and study the Burrascano lyme treatment guidelines. They are here:

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

Pages 9-10 give you a list of lyme symptoms. Make a list of all that you have for your first doctor's appt.

I strongly suggest you see a doc who follows the Burrascano protocol. That is what got me and all my friends well from this disease. Lots of docs treat lyme, but not many can get rid of it for people.

Ask if the doc follows Burrascano protocol when you call the office or support groups. Hope you can find one who does.

Keep posting here. We will help you through this. Glad you found the site.
 
Posted by daniella (Member # 6753) on :
 
PCR blood tests were the only tests that showed that I had Lyme and Babs. All other Lyme tests neg.

My body wasn't even making high white blood cell counts or antibodies against the infections any more.

It took about 4 -5 years of treatment for the regular western blot to finally turn positive and for my body to start making high white blood cells to fight Lyme and Babs.
 
Posted by windowlite (Member # 26620) on :
 
Thanks to the next posters' for your comments. I'll definitely post - asking for a Lyme Literate Medical Dr in my area!!
 
Posted by TF (Member # 14183) on :
 
Also, my lyme doc had the fibro diagnosis for years. Finally, he tested all his fibro patients for lyme, and 100% of them had lyme.

He tested himself, and he had lyme too. So, he treated his fibro patients and himself for lyme, and everyone got rid of their fibro.

What does that tell you?
 
Posted by windowlite (Member # 26620) on :
 
.. "my lyme doc had the fibro diagnosis for years. Finally, he tested all his fibro patients for lyme, and 100% of them had lyme"

Unbelieveable, TF !!

ALL the Fibro patients ??? Unreal !!

My doc wants me to have an antibiotic challenge test at Igenex. If it still comes out negative then I'll search for the next expert doc.

window*
 
Posted by Dekrator48 (Member # 18239) on :
 
I had a fibromyalgia diagnosis for 21 years before discovering on my own that it was lyme.

Both my western blots (Lab Corp and Igenex) were officially negative, but my Igenex WB showed a few lyme specific bands that were either IND or positive.

Using the western blot info by Dr B and Dr C, I was able to see that those bands were significant.

I then found a LLMD.

It is sooo important to remember that you may never have a positive test and Lyme is a clinical diagnosis based on history, symptoms and exam.
 
Posted by windowlite (Member # 26620) on :
 
Dekrator .. I'm going to pass your info onto my currant doc and see if he'll look at the bands like 'you' did.

Thanks for sharing your stories, everyone. It's so comforting to be able to be among fellow-sufferers who understand what I've been through with the FMS/CFS/Lyme link! It's unbelieveable that this misdiagnosis is 'not' such a rare story!

If anyone in Central Jersey (near Westfield, Summit, Mountainside) knows of a GREAT doctor - please let me know .... I like who I have, but we've just started on the idea of creative Lyme testing - so I don't know if he'll be the best at 'discovery'.

Thanks!
 
Posted by sickpuppy (Member # 23846) on :
 
The Igenex test is not an antibiotic challenge test. It includes all the necessary bands whereas the usual dumb dumb test--Western Blot--does not. It tests the blood for antibodies to the lyme. If you had lyme for a long time the body can give up the fight so there won't be any antibodies--doesn't mean you don't have it. I tested poz on the igenex and I went undiagnosed for at least 10 years FOR SURE. I might've had lyme longer than that though.

It's a tough road 'educating' a regular doctor.

And as others have said, your story is so common it blows the mind--in a bad way. Day after day I read posts like this. I too had a similar journey. It's a real crime how we've all been abused my the medical establishment.

I hope you find a great doctor!
 
Posted by windowlite (Member # 26620) on :
 
puppy ...

Thanks for your response, but my doc is being creative and is of the belief that if I have lyme, it's probably in the CYST stage now - so he's going to probably have me on an antibiotic that he thinks is one of the few that will break the shells of the cysts and spill out some of their substance that can be picked up with one of the Igenex tests. I really like his creative thought process, and the fact that he's thinking 'out of the box'.

I'll do this and see if it makes a difference in my results. The last WB test (I've had 3) that I had was about 8 yrs ago.

Thanks for your well-wishes..
 
Posted by LightAtTheEnd (Member # 24065) on :
 
It's great that you have a doctor willing to diagnose and treat you at all--those are all too rare for people with Lyme disease.

Keep in mind that you really need to see an LLMD (Lyme literate doctor) who has lots of experience treating other Lyme patients and getting them well.

This disease and its possible coinfections and complications is very complex, so you need guidance from an expert.

Most other doctors just don't know enough about it to treat it effectively--even the few who are willing to try.
 
Posted by Lymetoo (Member # 743) on :
 
42 yrs to diagnosis... 20 yrs from FM to Lyme diagnosis. (confused now??) [Razz]

Yes, do the abx challenge and then Igenex WB.

Hope you will find an LLMD very soon so you can get well!!

 -
 
Posted by sickpuppy (Member # 23846) on :
 
windowlite, which cyst busting abx will he be giving you? he should simultaneously be pairing that with something to go after the spirochetes.
 
Posted by BoxerMom (Member # 25251) on :
 
I was diagnosed 18 years after my initial infection. Yes, I was a FM/CFS patient for over a decade (although I never really believed in those "diagnoses").

My Igenex Lyme tests were negative by both CDC and Igenex standards, but I was swimming with spirochetes and L-forms and cysts. I had a few indeterminate bands.

Your doc has to know how the interpret the labs. Under "medical questions," click on "quick links to popular topics," then "western blot explanation."

You must also be tested for co-infections. Those tests can also be negative in the presence of active infection.

If your labs come back negative, it does not rule out Lyme and co-infections.

Get a good LLMD!!! And get your health back!!

Good luck!
 


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