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.

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.

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

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.

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

For Julie and myself: LLMD w/WBs

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.

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.

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

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

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).]

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!

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.

He treated her with IV Rocephin among other things.

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.

I had been diagnosed with CFIDS by one of my regular doctors (MD with anthroposophical practice), after a year and a half went to our other doctor my family uses, a general practicioner, who confirmed CFIDS. 2 years later was examined by a QME(qualified medical examiner) hired by my exhusband during a child support legal battle, who said that in his opinion I did not have CFIDS,concurrently my SSD claim got a denial.

I said, that's it, I need to get to the bottom of this, I KNOW Im sick !! Did internet search for well qualified CFID specialists in my area, picked out two that sounded good. Went to both. The first was an ancient Osteopath who is also a QME. He questioned me, looked at me, said he also didnt think it was CFIDS. Then he reached over and poked me somewhere on my back, and I was in such pain. He counted off the rest of the pressure points(or whatever theyre called), and said I had fybromyalgia. I thought great, a diagnosis from an expert.

I went to the 2nd doctor anyway, told her I'd just been diagnosed with fybromyalgia, answered her questions, exam, etc... She said she'd like to run a Western Blot test at Igenex to rule out Lyme disease.

I started seeing the osteopath for adjustments. Then got Western Blot test results back, very positive. I initialy thought, great ! This bacteria must be a very big load on my immune system, and It's a bacteria. So #1) No exhusband or court or SS can argue with this and #2) It can be treated, it will go away ! I was uninformed and niave at the time.

I thought I'd try to cure them both. Fight this with whatever it takes. The osteopath stopped seeing me when I told him I was positive for Lyme. Im still seeing the other Dr, who is a well known local LLMD it turns out. Of course, she thinks CFIDS and fybromyalgia are bull**** diagnosis and would never check for or confirm the pressure points. So, they ALL have their biases.

OK, I am positive for Lyme. But my should be latent viruses flare up constantly, CMV, Herpes I, Epstein Barr... I meet all the criteria for fibromyalgia (except being able to spell it). And now, I seem to have systemic candida. Maybe Lyme is the biggest load on my immune system, and she's right to focus on it. But, I think treatments should be more holistic.

I became completely disabled after a steroid shot and continued to decline in the months following. Saw numerous doctors and got numerous diagnosis, NMH, MCS, MVP, bells palsy, low thyroid, low adrenals, increasing food allergies, increasing pain and fatigue, neuro stuff, insomnia, hypoglycemia and many many many more.

No doctor could make sense of it. All became overwhelmed with my case. I began to research each condition on the net and looked for causes.

The common denominator was lyme. I asked the doctor I was with at the time to check for lyme. He said he'd been in practice 27 years and knew lyme and I didn't have it.

It took 3 months of insisting and finally he did the test and it came back positive. At first he thought it was a false positive and said he needed to talk to the lab director at Igenex. After his talk he said I definitely had lyme.

I told him I would be switching to an llmd and this doctor encouraged me not to because "they treat too agressively - quack!"

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

When it came back negative - he turned 180 degreees and said it's not lyme, it must be your mental/depression state.

I told him I wanted a Western Blot,
the test showed "reactive bands".

Doc #1 looked at my swollen hand, said I had an "unknown infection" and gave me steroids. When I asked, he said it "couldn't possibly be Lyme."

Doc #2 (one week later) PUT MY HAND IN A CAST, despite clean x-rays. Said it could be Lyme, but he would not test for it, and I should go see my regular doc.

Doc #3 (less than a week later) the "fractures" are spreading to different joints, so I take off my cast and make an appointment with my friendly walk-in doc. By now I've read about Lyme on this site and know what to ask for -- a Western Blot, and to start me on doxycycline. He is hesitant, but agrees. He calls me as soon as the results come in, with surprise in his voice. Yup, positive.

Now she's my life savior. She emailed me the Lymes Checklist. I checked yes for almost everything.

Took the check list to my PCP. PCP gave me 30 days biaxin xl 500 2x a day.

It's only been 2 weeks.....

Feel the same or slightly worse, and am very confused with normal conversation.

When am I going to "Herx"?

I would love to answer your question with a quick 1 - 2 or 3 answer, But I have found that nothing is cut and dry, or short and simple when it comes to giving answers about lyme

I went to a co- doctor in my PCP's office, with what I now know, was a classic bullseye rash. He diagnosed me with lyme and gave me 3 weeks of doxy.

6 weeks later I was worse and he now suspects M/S, so he sent me to a Neurologist. He diagnosed me with Neuro Lyme..gave me 30 days Amox.

Still not feeling better, PCP's Co- Doc sent me to an Infectious disease doctor..who concluded that I was "cured" of lyme, but could NOT tell me what I was suffering from...

BUT, she told me that if I would try to take my mind of my pain, and symptoms, I would "surely get better".

Not accepting that this was all in my head, I made an appointment with my PCP, and we talked about what I had learned on the internet about Lyme, and she gave me her take on it.

We decided to send me to a lyme specialist in Boston. This LLMD diagnosed me with late stage/chronic lyme and started me on treatment..

It is my PCP and my LLMD, I credit for helping me get my life back.

But technically the Co-Doctor diagnosed me first, then the Neuro doc, than my PCP and LLMD.

See, nothing is simple

Had I not made this call when I did, I would not be writing this. I was suffering from almost fatal respiratory distress syndrome, as well as just about immune shut down. I was so ill back then, to this day I can remember the feeling of death.

Nightly I was waking up with suffocation, it was like a nightmare...
the antibiotics stopped this within a few days, and the tears I had that FINALLY after 15 or more years I was on the right track.

My initial reaction was NO WAY do I have lyme disease. Lyme disease is an arthritic disease I thought.

I then went to a LLMD after this woman told me she was picking up lyme, and here I am,
alive, and hoping to stay alive if things go well for me.

It was just about too late for me, and
I often think of my very dear friend who
paid for this call to this woman, and who... i know, saved my life.

I still think sometimes it may be too late for me, but wonder if it is just fear from feeling so much death, or if it is just
too late.... hope I get a second chance.

trish