How many years were you sick before you got the right diagnosis?

8 months, a specialist

18 months. Diagnosed by my LLMD

I was unfortunate enough to get the flulike symptoms in December so it ended up taking almost a year.

I was diagnosed by the neurologist my PCP sent me to when I lost the use of my left arm. He told me that there was nothing wrong with me, I just needed a good man. He told me he would do his routine office blood work just to prove that he was right. Fortunately, I tested positive for Lyme.

Oh regular Dr. on the vineyard and then many specialist and of course depending on what lab the Dr. sent the blood test to at the time, is what they based their whole diagnosis on. Brillant no?
Send it to lab that gives gov. controled results so that you don't know what you have and don't get treatment for. Big secret.
As if they are going to be able to hide you.
No, they are thinking that they can hide the fact that Martha's Vineyard and Nantucket, and the Hamptons and Conn and the Cape...are all infested with some of the worst infectous disease's out there.
And then the Dr. who do try to help you are punished by the insurance compainies who do not want to spend the money on you to get you better. The money that you pay for insurance is for their pockets. Not for us when we get sick.

I had it for ten years before I was dx by an LLMD. The doctors I went to didn't have a clue. The only dx I got from mainstream doctors is arthritis and fibro. My wife had lyme disease too and she started putting two plus two together and told me she suspects I have lyme disease too. I ignored her pleas to go to her LLMD to get tested until I could hardly walk up and down the stairs to our bedroom. Finally I relented and went to her LLMD and sure enough I tested positive for lyme disease. Strange thing is, I had it ten years before she had it and never knew it. Had she not had lyme disease we might not have ever figured it out because, unlike her, I never got bit by a tick. My previous LLMD suspects that I got it from a botched surgery when I was given a blood transfusion.

Gary

Post Edited (GWB) : 2/6/2010 7:26:13 PM (GMT-7)

Time line:

~Symptomatic starting 1999

~Dx'd w/ FMS by family doctor in 2000

~On long-term disability 2001

~Locum at family doctor's office in 2007 states possible Lyme disease;
Locum advises to see LLMD, provides name & phone number

~Dx'd with both Lyme and babesiosis December 2007 by LLMD (Almost 9 years later)

~Oral antibiotic combinations from Jan/08 to Jan/10, with 30% improvement at best

Let's see... I got my first symptom in 1977 or 1978, went to dozens of MD's and a few Naturopaths (all stumped by what was wrong or misdiagnsed me with other things), and finally was dx in 2007. So that means it was 30 years from first symptoms to diagnosis. It was a Naturopath I was seeing about my lousy immune system who diagnosed me, so I'd have to say specialist (even though he is virtually my Primary Care doctor at this point).

I had symptoms for over five years and was finally diagnosed by an LLMD. My primary kept telling me that we didn't have Lyme disease here when I asked to be tested even though I had all of the symptoms including flu-like symptoms every 3 months. He kept telling me it was a viral flu BUT GAVE ME ANTIBIOTICS! I would get beter on antibiotics then feel bad again when I got off. NOONE here knew what I had and I was NEVER tested for Lyme. My LLMD thinks I've had it since I was little though.

I apologize for my verbosity in advance....but maybe this will be helpful to someone?

I don't know when I came down with Lyme. My first strange illness occurred in 2004. I had "cryptogenic" hepatitis, meaning they tested me for every hepatitis virus from A to Z, all sorts of weird congenital liver diseases, and never did figure out why my liver enzymes were over 3500 at the peak (normal for AST/ALT is less than 40). My bilirubin was also through the roof....I turned as yellow as a Highlighter marker.

I eventually started to improve, but was scared for a while because the doctors were using the "T" word (as in "transplant"). I've since read that Lyme disease can mimic acute hepatitis....who knows? Maybe that was Lyme? Or it could have just been the beginning of my autoimmune hepatitis (AIH), but I think that was ruled out by blood work at the time...?

I slowly recovered from that episode but by 2006-2007 I was experiencing a number of odd symptoms, including pain in my back and difficulty walking. In 2008 I once again had liver issues and was dx with autoimmune hepatitis, then fibromyalgia, then rheumatoid arthritis, then celiac disease....all within about 6 months. I ended up in a wheelchair. In 2009 I was dx with lupus, then UN-diagnosed and told I had another as-yet-undefined autoimmune disease that's NOT lupus. (???) Well, that's another story....

I was just dx with Lyme about a month ago. I tested positive on the Lyme ELISA, then I did a Western Blot through Igenex: negative by CDC standards but positive according to Igenex.

My theory is that sometime in the last 3 - 7 years I came down with Lyme disease and it managed to trigger many of my autoimmune diseases and my fibromyalgia. I know I had a few AI diseases before the Lyme hit, but the explosion of diagnoses over the past couple of years has been ridiculous....Lyme must be responsible for some of them.

In any case I was the one who told my neurologist I wanted to be tested for Lyme disease. I insisted on it because a friend of mine in an online celiac forum kept pushing me to get tested. I'm so glad she did....I never would have known. And none of my doctors ever mentioned it as a possibility, even with all of my unexplained neurological symptoms!!