I have posted my story before but i still have questions about why doctors test for lyme if they are not willing to treat it?

I went to a rheumy last October with complaints of terrible fatigue and low grade fevers. He ran a bunch of blood tests.

The only thing the doctor said was that i had "boderline lyme disease". I only had 3 bands (39, 41 and 66) on the IGG but my ELISA was positive. So, according to the CDC i was negative.

Im still having symptoms and im going to a LLMD.

My husband wants to know if i have lyme, why the doctor would not treat me or at least send me to someone else? The only thing he did was tell me i had fibromyalgia.

I dont have an answer for my husband. It seems like i am almost having to defend myself about why i want to find out whats wrong with me. Im just becoming more and more depressed.

JB

according to the CDC i was negative
WRONG CDC says make it a clinical diagnoses the stuff you quoting is for tracking the disease not diagnoses.

FDA http://www.fda.gov/medbull/summer99/Lyme.html
CDC http://www.cdc.gov/ncidod/dvbid/lyme/diagnosis.htm
You should be treated on symptoms when it comes to lyme and other tbi's. Tick born Illnesses

I had it full fledged + test, igm and igg, after being extremely sick for well over a year.
they treated me w/ 3 weeks antibiotics, said 'you're fine'.

Relapsed within a few months, went to a few LLMD's, stayed on zithromax for about 5 months, felt fairly fine therafer, went off meds.

One year later, symptoms so severe neurological, (and numerous antibiotic allergies to boot, I was not able to be treated overall) SO I went to TONS of different doctors, to see if it could be 'something else'.

I was misdiagnosed w/ seizures, lost my drivers license, and was being prepared to meet a neurosurgeon for surgery of uncontrolled seizures.

I saw about 52? doctors in 1 year.
Went to 2 universities for full evaluations.

Had a spinal tap done, (now about 3? years after my initial lyme dignosis).

Dr read spinal tap WRONG- YES - wrong.

Went to ANOTHER university, they said OMG your spinal tap is POSITIVE for lyme, (the dr who said this, is a dr from a 'steere' world, which is the dr's who state after 3 weeks of antibiotics you're healed).

I was put in the ICU and desensitized to penicillin, was on IV for 1 month.

Felt OMG GREAT after, for an entire year, was wonderful.

Last summer, rashes down my leg, that lasted 1 month+.
got re-tested for lyme, full fledged + in blood.
went back to 'dr' who desensitized me, said- another spinal tap for me!

-new lab from different insurance company..-

got retested, 3 months after old blood test from OTHER lab, was down 1-2 IGG bands.
spinal tap negative.
dr said at beginning OMG u prob have MS, if the spinal is negative for "MS" then I will do IV on you again, as you are fully clinically diagnosed w/ lyme again.

After results came in he said, do a diary, get back to me in a month. I did.
after that he said, okay, lets run a few other tests, (co-infections), negativefor HME (or HGE forget). He said, wait another month, get back to me.
I did not call him back.
He said- I think u have 'mollecular mimicry"
(steere line of inflammatory response of post lyme syndrome)...

I said- WAIT! I have a 3 for a sed rate, negative C Reacive protien tests, and a POSITIVE lyme western blot? I did not go back to said dr. Have been lyme + w/ no new treatement for 1 year now.

He asked if i wanted him to run a lyme test but i figured im seeing a LLMD doc next week who is going to run a bunch of tests using Igenex and MDL labs. I already have results for Quest labs from October.

Also, I posted about a week ago that i have bilateral ulnar neuropathies at the elbow. I only received one response. I was wondering if lyme can cause neuropathies?

The neurologist who ran the tests told me just to be careful with my elbows. He also said i would never have had known about the neuropathies if he never did the EMG. DUH!!

He ran the tests to see if i had damage to my median nerve from a needle injury from a nurse trying to draw blood (another long story).

Thanks for your replies. It means so much to me to have people who care. :-)

JB

re doxy and amoxi:

About 2 weeks ago going through prescription receipts for income tax purposes, noticed that I was put on doxi twice for 21 days each time over 3 yrs ago for pleurisy or sinus infection, etc., then twice amoxi for same diagnosis. Well guess what I did feel better each time, but months later symptoms returned only worse. I also once took cepro and could only handle for about 4 days as got so ill, thought I was allergic to drug.

Can't remember why I am posting a reply here. Have been working for the past 2 weeks as editor for a phd candidate's paper. I am able to handle that quite well, but am so tired in evening, can only read posts and then off to bed.