Re: break in treatment

[Guest guest]

Dawn - did you call your LLMD's office and ask for a prescription to

carry you through until your appt? It may simply have been an

oversight. I think that sometimes the LLMD's have to avoid drawing

attention to themselves in order to stay out of the line of fire

from the AMA etc. It can't hurt to check with the office.

I guess I am lucky in that my primary care doc will supplement my

Lyme meds if I ask him so between him and my LLMD, I can get things

done.

Diane

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> ,

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> I do have a highly reccommended LLMD from several people on this

list and the DFW Lyme list...Dr M in TX.

>

> My doc believes I was infected in 98 but I was not officially

diagnosed until Nov 2005. That is when I first began any kind of

treatment at all. This was my first experience on abx for treating

Lyme. I started them on Nov 28 and 30 days ended today.

>

> To my knowledge, I have not been tested for co-infections

yet...but he did test my husband for Lyme and co-infections on our

last visit...and he came back highly positive for Babesia...neg Lyme

(these were quest labs since our ins. covered it 100%...but we may

still pursue Igenex, unless he will treat soley on the pos Babs

test...my next appt is Jan 9...

>

> I am a bit frustrated about the break in treatment. The office

staff knew when my next appt would be so why did they not prescribe

another 2 weeks to get me through to the appt??

> Grrrrrr..

>

>

> Part of me wonders if I have been " black balled " ....recently I

apparantly caused a local doctor a lot of trouble without realizing

it...and the D.O network here is pretty tight...so if he got word

that this other doc got in trouble because of me, that may explain a

lot...but that is pure speculation on my part.

>

> Here's the scoop....

> The first doc I went to for Lyme testing told me she was doing a

study with the CDC regarding Lyme disease. She said insurance would

not cover the test because it was " experimental " . To participate in

the study cost $150 for the test...the dark field live blood

analysis. She was able to show me the spirochetes in the cell wall

of my red blood cells and several other pertinent things that were

helpful and she said she believed I was definitely dealing with

Lyme. She also wanted me to buy her herbal supplements to the tune

of $500 per month. So that is when I sought out a second opinion

because I had read enough to know ABX were almost necessary at this

length of infection with no treatment.

>

> I asked her to release my records to the LLMD for a second

opinion. She refused saying that all the info was part of the study

and could not be released. I am not stupid either and I know about

the HIPPA act that they cannot with hold my medical records. THe

more we went round and round about my medical records, I began to

have red flag warnings rise all over the place. I had another

friend who is a doctor tell me that if the CDC were legitimately

doing a study with her there would be no charge to the patient , in

fact the patients would be PAID to participate in the study. So I

went to the CDC website and sent an email saying nothing more

than, " Can you verify for me that you are doing a study with Dr D in

Fort Worth? "

>

> I never heard anything from them so I even forgot I sent the

question asking for verification. After that time I had my first

visit with the highly reccommended LLMD and decided to stay with

him. I told him the trouble I was having with getting my medical

records sent to him and he very firmly told me to " let it drop " . he

explained how many docs working with Lyme have been taken before med

boards over the use of that experimental test. So once he explained

I just let it drop.

>

> Last week we called the other docs office to let them know to go

ahead and cash our payment check, because we had put a stop payment

on it until we could figure out why we could not get our medical

records...once my LLMD explained we relseased the hold. So when my

husband called their office, the office manager jumped all over case

accusing of reporting them to the CDC! They are now being

investigated. I was flabbergasted to say the least! All I did was

ask for confirmation that they were doing a study with her as she

TOLD ME!! A day after that phone call I received a certified letter

at my door that I had to sign for saying that I was being dropped

for their practice.

>

> So part of me wonders if this is part of the reason my LLMD is

not refilling my meds.

> Or maybe I am just gun shy....and terrified of losing his

medical expertise.

>

> I am beside myself because I never intended to cause trouble,

only verify info the doc had given me....things just were NOT adding

up in my mind. I did not even tell the CDC she said it was a lyme

study...I just asked if they were doing *A* study with this

doc...and they never even acknowledged my email--but aparantly just

began an investigation of her practive. I dont know what to think

anymore!

>

> I just dont want to lose my LLMD because I tried to verify

something the other doc told me.

>

> Dawn

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