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

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New Member

Date Joined Feb 2010
Total Posts : 12
   Posted 2/6/2010 3:05 PM (GMT -7)   
I'm just curious if your primary care doctor figured out your problem or if it was a specialist.

Veteran Member

Date Joined Oct 2007
Total Posts : 1172
   Posted 2/6/2010 3:54 PM (GMT -7)   
8 months, a specialist

Veteran Member

Date Joined May 2007
Total Posts : 517
   Posted 2/6/2010 3:54 PM (GMT -7)   
Hi Cass,
I was fortunate, and only had to wait one year and three months. This was after I had a exposure with ticks, a bulls eye rash, and many Lyme symptoms. After seeing my PCP and being tested for everything under the sun, including Lyme. The only thing I tested positive for was EBV. Since the Lyme test came back CDC negative, he would not give me ABX even though I told him of the tick exposure. The problem I and many others have is the testing for Lyme is so bad that many infected do not test CDC positive.

After finding this web site I finally learned about LLMD's and scheduled an appointment where I was clinically DX with Lyme and later tested positive for Ehrlichiosis also. I have been treating for three years now, and although I am much improved, I still have a few lingering affects.

Best wishes

Regular Member

Date Joined Jun 2009
Total Posts : 367
   Posted 2/6/2010 4:15 PM (GMT -7)   
18 months. Diagnosed by my LLMD

Forum Moderator

Date Joined Nov 2009
Total Posts : 3266
   Posted 2/6/2010 4:49 PM (GMT -7)   
24 years. But it took a second bite and coinfection with Ehrlichiosis to seek help for insomnia and psychotic episodes. It was a Nurse practitioner that ordered the Lyme test on an offchance. I'll be eternally grateful to her.

Veteran Member

Date Joined Apr 2008
Total Posts : 1522
   Posted 2/6/2010 5:40 PM (GMT -7)   
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.

Martha's Vineyard
Veteran Member

Date Joined Jul 2008
Total Posts : 1119
   Posted 2/6/2010 6:22 PM (GMT -7)   
Got it in 02 but did not know what was wrong with me.
Got it again in 03 and got treated for it.
Got better with alternative medicine in Az. went Oct 08 off and on to Feb. 09.

But thinking back to the summers in Edgartown Mass. In 1998, and we were with my mom and my daughter was in diapers. We came back to the house and my moms skirt was covered with tiny white ticks.
I had no idea then what was all over our property.
Our family all got lyme in 2004. It has been a long battle. But all is well now with my children. Feb 8 TH of 2009 is when I left Envita. And I am celebrating a year of perfect health.

Martha's Vineyard
Veteran Member

Date Joined Jul 2008
Total Posts : 1119
   Posted 2/6/2010 6:28 PM (GMT -7)   
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.
Our family all got lyme in 2004. It has been a long battle. But all is well now with my children. Feb 8 TH of 2009 is when I left Envita. And I am celebrating a year of perfect health.

Forum Moderator

Date Joined Mar 2009
Total Posts : 2154
   Posted 2/6/2010 6:32 PM (GMT -7)   
At least 4 years. First symptoms in april 2005, lots of strange symptoms including mouth infection, headaches, heavy legs, nauseau,etc. til June 2006 ended up in ER twice with stiff neck and severe anxiety. After numerous doctors all telling me meno, one endocrinologist listened and listened and insisted something not right. In March 2009 got a copy of lab work ordered by primary care in June 2006 which showed three prominent bands for lyme but she told me everything fine. Ugh if only I knew then what I knew now.

Veteran Member

Date Joined Jul 2005
Total Posts : 570
   Posted 2/6/2010 7:15 PM (GMT -7)   
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.


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

Nicky D
Regular Member

Date Joined Jun 2009
Total Posts : 361
   Posted 2/6/2010 10:11 PM (GMT -7)   
2 years. I figured out my problem, and saw a lyme-literate natural practitioner who confirmed it. I now see an LLMD.

My primary care doctor wouldn;t even order blood tests to test me for auto-immune diseases. I had to get a referral to a different doctor through a drop-in clinic. The other doctor couldn't find anything wrong, but when I started having a bunch of neurological symptoms, he wanted me to see a neurologist. Unfortunately, the referral had to come through my GP, and it took over 6 months to process. By that point, I'd already said "screw this" and done a bunch of research on my own.

Veteran Member

Date Joined Oct 2006
Total Posts : 851
   Posted 2/6/2010 11:42 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

Regular Member

Date Joined Oct 2007
Total Posts : 259
   Posted 2/7/2010 5:41 AM (GMT -7)   
4 years. At 2 years in, a Physician Assistant at a reg doc office said "maybe it's lyme" but then the test came back negative. It wasn't until 2 more years after that that by sheer chance(and daily scouring of the internet looking up diseases) I read about ELISA(which is almost certainly what the PA ordered) being unreliable due to false negatives and decided it MUST be lyme after all; and then went to an LLMD to have WB done.

So I kinda figured it out on my own except that if that PA hadn't suggested it in the first place I might not have known to be googling it later on. The sad thing is how useless ELISA is and is still used anyway as front line testing.

Veteran Member

Date Joined Aug 2007
Total Posts : 4399
   Posted 2/7/2010 12:56 PM (GMT -7)   
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).
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.

Veteran Member

Date Joined Oct 2006
Total Posts : 1458
   Posted 2/7/2010 3:08 PM (GMT -7)   
Many years (and many docs, including specialists) until correct diagnosis for both of us.-------lyme literate nurse practitioner, and llmd finally diagnose

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 2/7/2010 9:52 PM (GMT -7)   
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.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Regular Member

Date Joined Sep 2009
Total Posts : 233
   Posted 2/8/2010 10:39 PM (GMT -7)   
Symptoms started 4 1/2 years ago - I was just diagnosed last August. I did have some really weird symptoms that came and went nearly 20 years ago, so it is possible that I got it back then and it was dormant all those years. I may never know for sure! Sort of an LLMD (alternative doctor) diagnosed me.

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 2/8/2010 11:43 PM (GMT -7)   
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!!
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

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