posted 31 January 2005 15:32               

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.

posted 31 January 2005 19:00            

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!"

posted 31 January 2005 19:43            

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

posted 31 January 2005 19:51               

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".

posted 31 January 2005 23:01               

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.

posted 31 January 2005 23:40               

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"?

posted 01 February 2005 08:25            

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

posted 04 February 2005 19:03            

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