Re: Carol, Igenex, neuro Bb

[Guest guest]

Thanks for the information, Duramater..Is Lymenet considered the best site

to get up to speed on :Lyme? You guys are so far ahead..

And, if you don't mind me asking, Have you seen neurological improvement

(in which areas) when using ABX, and if so, which ones? (I have not had a

doc who would give long term ABX)

TIA,

Carol

> [Original Message]

> From: duramater27 <spam-barb@...>

> <infections >

> Date: 5/3/2005 11:30:35 AM

> Subject: [infections] Carol, Igenex, neuro Bb

>

> --- In infections , " carol grahm "

> <sunscape1953@e...> wrote [iN PART]:

> > In the mean time, can anyone tell me if the Western Blot Igenex

> test will accurately diagnose someone who has had, possibly, the

> neurological borreliosis for over twenty years? (seems to,

> accurately, refect my symptomalogy)..I have an appointment with doc

> coming up, soon, and would like to ask about having it performed.

> Also, how do you find out the cost?

> >

> > TIA to all,

> > Carol

> >

>

> Carol,

>

> Lyme disease is a clinical diagnosis supported by a variety of

> tests, serology among them. Prior to my most recent testing for

> which I used Igenex, I spoke to Nick , the lab director. I

> was impressed not only with his extensive knowledge but with his

> measured approach. While it might have benefitted him to

> recommended a vast array of testing, he instead suggested only the

> most necessary testing backed by rational, methodical reasoning.

>

> I personally would recommended Igenex for Bb testing as well as that

> for co-infections. You can call to receive (A) the appropriate test

> kits for the Bb & co-infection tests that you need, and (

> information regarding pricing. The phone number is: 1-800-832-

> 3200. You might also peruse the website: www.igenex.com as it has

> some overviews of how tests are chosen and general information on

> tick-borne illnesses.

>

> Just an FYI, postive test results are reported to your state

> department of health. My doc got a call from them, was suprised by

> this, but very pleased. The DoH wanted to know if he had begun

> treatment yet, and if not, be sure that he was aware of my positive

> test result.

>

> Again, keep in mind that such testing is only one facet in the

> determination that one may have such an infection. Particularly in

> the case of neuro involvement, other imaging or neurological testing

> may be necessary and one, of course, needs to rule out other

> differential diagnoses or identify additional issues.

>

> Best of luck with your illness,

> ~DM

>

>

>

>

>

>

>

>

[Guest guest]

> Thanks for the information, Duramater..Is Lymenet considered the

best site

> to get up to speed on :Lyme? You guys are so far ahead..

>

> And, if you don't mind me asking, Have you seen neurological

improvement

> (in which areas) when using ABX, and if so, which ones? (I have

not had a

> doc who would give long term ABX)

>

> TIA,

> Carol

Would I say personally that Lymenet is the best? No, I would simply

say that it is one of many places to obtain information. There are

a vast array of ideas, information, and mis-information there, many

people with different goals, experiences, and agendas. Again, in my

opinion...

Given your interest in neurological issues, I would direct you to

here to begin your education:

http://www.lymeinfo.net/neuropsych.html

and

http://www.lymeinfo.net/lymediseasetreatment.html

There are a lot of links to follow and papers to read.

And yes, many (but not all) people can see neurological

improvement. The antibiotics, combinations, adjunctive meds and

supplements that people use differ based on the specific infections

they are dealing with, their symptoms, their tolerance/allergies,

and pre-existing conditions.

Someone on Lymenet asked a similar question regarding improvement of

neuro symptoms and here's the link to that:

http://flash.lymenet.org/ubb/Forum1/HTML/030842.html

As you will see, a vast array of symptoms, treatments, experiences,

and ideas as to what helped...

[Guest guest]

Like most people I have 10000000 sx, but the worst were heavy

anxiety, extreme malasie / constitutional pain, extreme fatigue,

sleep disturbance, hyperesthesia (usually totally couldnt sit at a

table for dinner with my parents & sister - too overwhelming)...

Evaluating my improvement is difficult because early in my illness

(last summer) I once had a 3-week remission, pre-abx, where I was

fine-ish. Then I got much worse all over again. But I still had

pretty severe hyperactive mentation during the remission. My brain

had verbal thoughts, with or without my will, every single second I

was awake.

This has gone away on long-term abx. Also, in fine weather most of

my sx are usually almost as good as they were during the spontaneous

remission. During most bad-weather days or sometimes just for no

reason, I am crushingly depressed, with " virus-like " malaise. I can

walk 4 miles or so regardless of how I feel - which is about 2-3x as

good as during my first months of abx. Altogether, I feel pretty

horrible, but probably 70% improved (whatever that means exactly)

over how I was all last summer and fall minus the spontaneous

remission. I was pretty damn bad. I'm not doing any antidepressants

or palliatives now, but probably will soon-ish.

The clinical studies lit re long term abx for lyme has the work of S

Donta on one hand and the New England Journal O'Medicine study by

Klempner et al on the other (which apparantly showed no benefit).

There is substantial acrimony between the

clinician/investigator " camps " to which these workers belong, and I

think there is furthermore really a lack of trust about what the

other party is observing. I feel little trust for the NEJM result

myself, but I never even took the time to go over its methodology,

since I personally, for the purposes of choosing my own treatment,

judge the value of long-term abx to be very well attested in

informal media by intelligent patients and clinicians. (Plus I know

from multiple peer-reviewed papers that the assertion that the

infection is easily eradicated by abx is a horrible lie.)

Donta cites a no-substantial-improvement rate of ~25% for his

particular regimes (which are not combo therapies).

> Thanks for the information, Duramater..Is Lymenet considered the

best site

> to get up to speed on :Lyme? You guys are so far ahead..

>

> And, if you don't mind me asking, Have you seen neurological

improvement

> (in which areas) when using ABX, and if so, which ones? (I have

not had a

> doc who would give long term ABX)

>

> TIA,

> Carol

[Guest guest]

wrote:

" Donta cites a no-substantial-improvement rate of ~25% for his

particular regimes (which are not combo therapies). "

:

First- sorry to hear you're feeling so wired and crappy.

Second- you're so right about the disconnect between research and

the clinician. That's just the was it is in any business- And

medicine (alas) is just a business.

Klempner and Donta are both heavy weights (not clinicians) and I knew

it was only a matter of time before one or the other had to get out

of Dodge. Donta was of retirment age, and I think probably ready to

get out of there himself, so I guess it worked out for both of them

career wise.

The VERY interesting thing is Donta says he has about a 25% failure

rate with his regime (I've not heard any other Docs quote their

sucess or failure rates). Id like to hear his comments on why he

thinks this is so.

I know when I talked to him about my case (when I was looking for

an LLMD - which was unfruitfull in the end) - he said

my case was too complicated and encumbered with multiple autoimmune

diagnoses.. and I was just too simultaneously wired and depressed at

the time to ask if he then thought I would be one of his failures..

in any case I didn't take him on as my Doc, but my ALtMD and I

followed his HCQ theory.

I don't have a solid theory on the 25% failure rates (I wish I could

see the case histories!!) but my best guesses it's either a)

immunosuppression to some degree (with various degrees of GI

dysfunction) additional/multiple infections c)toxicity issues

(including the drugs) being mis interpreted... or d) my favorite

theory - the bugs are just smarter than we are.

Barb

> > Thanks for the information, Duramater..Is Lymenet considered the

> best site

> > to get up to speed on :Lyme? You guys are so far ahead..

> >

> > And, if you don't mind me asking, Have you seen neurological

> improvement

> > (in which areas) when using ABX, and if so, which ones? (I have

> not had a

> > doc who would give long term ABX)

> >

> > TIA,

> > Carol