posted 30 January 2005 14:07               

1. Your family doctor
2. Specialist (reumatologist, neurologist,infectious diseases etc)
3. You made it yourself on the basis of the Internet,family, friends or other resources and later made your doctors to confirm it.

posted 30 January 2005 14:57            

Test was positive so I guess the neurologist wins the golden ring for me! He diagnosed me with Lyme meningitis.

Second time, I had huge cardiac symptoms and again ended up in the E.R. (about 3 years later after being pretty well). In the blood tests they did, they included a Lyme titre which came back positive. After keeping me in the hospital for about a week, the cardiologist ruled out all other causes for the symptoms, went and read the Lyme literature available at the time, said it seems like a 50/50 yes/no split to him regarding chronic Lyme and that I wouldn't get treated at this hospital. He transferred me to the NY hospital my LLMD worked out of saying that's what he would do!

So second time, E.R. doc/cardiologist.

posted 30 January 2005 15:46               

Then, family duck said it couldn't be Lyme - ELISA was neagtive.
Could convince dermatologist finally to do a Westernblot which was positive.

posted 30 January 2005 15:55               

A friend told me "gee it sounds like you have lyme" the first week I got sick. I said "yeah but I didnt get bit by a tick". She didn't know any better, and neither did I.

posted 30 January 2005 16:39               

For JC: pediatrician, then infectious disease specialist, then LLMD w/ WBs

For Julie and myself: LLMD w/WBs

posted 30 January 2005 18:36            

She treated me with 30 days of DOXY.
Symptoms came back and we tries DOXY again, 30 more days.

Symptoms came back so she sent me to a hematologist. He denied Lyme.

I then went to an LLMD.
Voila a positive WB.

posted 30 January 2005 19:54               

It was me. Only recently confirmed with clinical dxd from Infectious disease. This was after a year of trying to convince docs that I needed long term abx for lyme.

posted 30 January 2005 20:16            

My rheumotologist just made a "clinical diagnosis", based on reaction thus far to abx seems correct.

posted 30 January 2005 21:57               

I was referred to him by my naturopath for help with systemic yeast. This LLMD is my naturopath's physician. Cool, huh!?

posted 30 January 2005 22:03               

2. I went to an OD for another reason and he tested me with Igenex lab after a negative test with Unilab for lyme disease. The Igenex test came back positive on the western blot.

4. I then saw a lyme specialist and he confirmed I had lyme disease. I continue to see him and be treated. That was in Jan/Feb 2003. Still waiting to be able to do routine chores around the house and walk for longer than 20 minutes at a time on a good day.

5. I also searched the web for subnormal temps and some of the other symptoms and lyme kept coming up. But, I also had the symptoms for MS, ALS, Valley Fever and Myasthenia Gravis, CFS, etc. I started a binder full of the information and tried my best to self dx but with the brain not working it wasn't possible. It was a slow process of elimination and talking to the MS Socity, MG Foundation, etc. etc. When I talked to the Lyme Disease Association, I had the positive Western Blot and was just looking for a doc.

I think I had seen over 35 docs when I saw the lyme specialist. It is very disconcerning that so many docs ignored the possibility of lyme disease. Two doctor's offices at least teated for lyme disease but lost the test results when I asked for a copy of them. I also was seen by neuro's at UCSF and docs at Samsun Clinic. While at Samsun clinic I was told that people come from all around the world for answers. I didn't finish with Samsun Clinic as my insurance ran out. But, the neuro didn't think my symptoms were lyme related and once again I was tested for ALS, MS and MG and heart and other possibilities. They did have an infectious disease doc who was open to lyme disease although he used Quest lab for testing. Test results came back negative with Quest lab for lyme.

[This message has been edited by kam (edited 30 January 2005).]

[This message has been edited by kam (edited 31 January 2005).]

posted 30 January 2005 22:11               

I was given a LLMD in MO and he started treatment on us both after our first appt.

I feel I (and all of you) diagnosed my daughter and I. Our LLMD just confirmed it. My daughter's WB was positive, mine was equivocal (sp?).

Thanks to you all!

posted 30 January 2005 23:04               

I knew I was bit by a tick. My PCP & allergist would not give me antibiotics just in case. They chacked and said the protocol was to wait a month and then test.

3 1/2 weeks after the tick bite my face went numb. I diagnosed Bell's Palsy on the internet and learned it was a presenting symptom of Lyme. Therefore technically I diagnosed it first.

posted 31 January 2005 09:35            

He treated her with IV Rocephin among other things.

posted 31 January 2005 11:54               

This is the doctor's office who lost the test results.

This is also the doctor's office who told me for 3 months that they were waiting for approval for insurance to send me to a medical clinic such as UCSF, or UCLA, etc.

When I was told the insurance company denied the request, I called the insurance company to find out why.

The insurance company then said they never received a request from the doctor's office.

I called the doctor's office and was told that they had called the insurance company and that they had denied it over the phone.

I called the insurance company and they said that they do not do business that way. That it has to be in writing.

I changed doctor's offices. And, the same song and dance happened. They too stretched it out for 3 months. I now know that it does not take 3 months to get approval.

But, it does take 3 months to get the quartly bonus for a new patient. HMMM.

I lost 6 months at these offices. But, I learned from them....all be it my lyme brain was a lot slower than my normal learning curve.