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Posted 4/10/2012 3:04 PM (GMT 0)
I feel like I'm on a new reality show.

Just came back from the big CC (Clinic).
I THOUGHT I wanted a 2nd, 3rd, 4th. . . opinion???

The doctor there said to take out my PICC line and stop the ABX.
That I don't have Lyme disease, just Fibromyalgia.

I was diagnosed with that 15 years ago and treat with Neurontin but,
I feel there is something else.

He suggests doing Hot Water (hotter than swimming pool) therapy every night at 6PM.

Does anyone know if insurance or disability covers hot tubs?

For now I am going to continue my ABX treatment against his advise.
I am in my 7th month of orals, currently on Doxy and
3rd month of IV, just starting Zithro--I have never been this SICK.

The Dr. at CC agreed to do another Lyme blood test there, it came back Neg.
He would only order the ELISA though.
He says the urine tests, from Califiornia, that I finally got positives are unrealiable.

Has anyone else heard of this?

Sorry for the mix up in train of thought, I always say it's the Lyme talking.

Post Edited By Moderator (achievinggrace) : 4/10/2012 1:12:52 PM (GMT-6)

Posted 4/10/2012 7:14 PM (GMT 0)
Hi Lyme?

I had to take out the name of where you were being seen. Sorry about that.

Have you been to see a Lyme Literate Doctor, one who follows the ILADS guidelines?
Posted 4/11/2012 1:23 AM (GMT 0)
I think so.!?!?

He has been treating Chronic Lyme for many years

We tried
Amoxcylin, Ceftin, Biaxin, Flagyl, Suprax, Rifampin, Doxycycline--orals
and
Rocephin and Zithromax--IV

Now my family says to quit after 5 doctors have told us that I don't have Lyme.
All the blood works are Negative

HELP
Posted 4/11/2012 3:37 AM (GMT 0)
So are you saying that you've been seeing an LLMD, who is the one treating you with the PICC abx for lyme, and then when you went for a 2nd opinion that's when you were told it's not lyme?

It sounds like something fishy is going on. Any doctor who will order only an ELISA in the 21st century clearly is not up to date about current lyme disease research. I'm just wondering...why did you go to the clinic in the first place? Are you unhappy with your current doctor or treatment?

I can't diagnose you (and unfortunately, that's not the easiest thing for the medical community to do at times, either) but I can tell you that I've tested negative for lyme, have been diagnosed with fibromyalgia, and have come back around to testing positive for lyme (even though I was never bitten a second time). While fibromyalgia is a legitimate condition, it's become a bit of a trend to diagnose it where it is not. Your best bet if you want to be tested properly (although even this isn't 100% accurate) is through igenex or another specialty lab.

Just a word of caution, if you're considering hot baths - sometimes heat can cause a herx with lyme - the bacteria will die off at high temperatures. This could potentially cause a worsening of symptoms. I think it would really help to look at the "new to lyme" thread - there's a lot of information in there to help really make sense of lyme disease.
Posted 4/11/2012 5:38 AM (GMT 0)
A lot of docs say fibro is a symptom of chronic infection. Virals, mycoplasmas, lymes, some of these, a combo of a few things.

It's strange to me now when some docs say it's just fibro or these other things like CFS, and more and give no causes. They have now found causes.

This molecular biologists site educated me when I was misdiagnosed with Sjogrens Syndrome with joint inflammation. I knew he was wrong, and searched and found this site that says, Sjogrens, Fibro, MS, typically symptoms of chronic infection.

One area of his site on Fibro, CFS, another area on auto immunes etc. He was nominated for a Nobel Peace Prize.

I sure wish you luck and hope you can get some support and answers.
Posted 4/11/2012 11:53 AM (GMT 0)

WWJD20 said...
What are your symptoms? Forgive me if you already said, but why don 't they think you could have Lyme? Do you feel worse (herx) while on abx?

Something doesn't fit here, does it ? I know my family thinks I'm a little off the wall too. Oh well.


4 years ago woke with worst headache ever--viral menengitis

Headaches for 6 months straight then down hill. . .

Constantly tired, but always have been a sleepy person

Hurt all over, worse than the Fibro pain I've experienced for years.

Every joint hurts, can barely go up & down the stairs.

Blurry vision, hard to swallow, and other things I can't think straight anymore either.

Yes I do feel worse on Abx, but I used to get sick from Abx for other things years ago.

In regards to all the docs that don't think I have Lyme. . .

The only positive results were Igenex urine tests, which were
1pos. 1 neg. & 1 undetermined. because of RBC (menses) then
I sent away another set and got 2 pos. & 1 neg.
I recently sent blood away for genetic testing to Igenex.
All (3) local labs show negative ELISA.
Only band 41 shows reactive on WESTERN BLOT

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