Re: Re: to Ken re: stats >lyme tests<

[Guest guest]

I have been looking into lyme testing lately. It is very frustrating.

One thing is becoming apparent though- the tests are not reliable, and

have to be done over and over again. positivity varies a lot in

different stages of the disease. Igenex lab told me that some doctors

have their patients do a bit of antibiotic just prior to the test to

kind of flush out some spirochetes. I haven't got a sufficient answer

about this and plan to pursue it tommorow. www.Igenex.com has some info

on using lyme tests: click on the articles link in the index. also a

really great article is at

http://dwp.bigplanet.com/eojlyme/pages/view/send.nhtml

Lyme disease does respond to amoxicillin which is a pennicillin. this

is of particular interest to me, because dicolxicillin (sp?) was the

first thing I took when my disease started and it worked great...until I

quit. I've since tried doxicycline which worked immediately after the

amoxicillin...until I quit, but had no response to in a subsequent

trial, and zithromax no response. Guess what? they aren't very good

for treating lyme. my docs talked me out of pursing lyme (which I take

most blame for- unless we have the best specialist docs, we need to

check things out for ourselves) based on erroneous information of all

kinds including missinformation on testing promoted by of all people the

damned CDC! Listen to me, I'm already pissed and I haven't even

retested yet. Just wait till I test negative 3 times in a row. I'll

try to keep the list informed of very pertinent information when I find

it.

My wife just happened to meet the main lyme and tick borne disease

studier guy in northern california yesterday. He said there's a new

spirochete that they're finding, but they aren't sure if it's

transmissible to humans yet. Also, human granulocytic ehrlichiosis is

around here too. That was really great timing.

[Guest guest]

wrote:

>My wife just happened to meet the main lyme and tick borne disease

>studier guy in northern california yesterday. He said there's a new

>spirochete that they're finding, but they aren't sure if it's

>transmissible to humans yet.

Hi ,

Who might this " main lyme studier guy " be?

Nelly

[Guest guest]

Hi Nelly,

I would think it's Nick of Igenex Labs,. just my guess.

Hyperbaric Oxygen is still the best treatment for Lyme from what I'm

hearing & reading. I've already emailed you the details on that a few weeks

ago.

Al

Re: Re: to Ken re: stats >lyme tests<

> wrote:

> >My wife just happened to meet the main lyme and tick borne disease

> >studier guy in northern california yesterday. He said there's a new

> >spirochete that they're finding, but they aren't sure if it's

> >transmissible to humans yet.

>

> Hi ,

>

> Who might this " main lyme studier guy " be?

>

> Nelly

>

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

Nelly and Al

His name is Bob Dale, out of UCB and don't get too excited, he studies

it in parasites and animals not in people. our area is a hot bed for

lyme. He also studies other tick borne illnesses. He did the study on

how something in the blood of blue belly (western fence) lizards kills

lyme disease. The little young nymph ticks haven't fed on lizards yet,

and I guess that's one reason they carry the spirochittes (sp?) more.

That's what I was bit by about a month and a half before falling

abruptly ill. Ehrlichiosis is also in this area, so I'll be testing for

that too.

The lab that Bob Dale recommended is Virolab in berkley CA. 510 524

6201 They test for lime by ACIF anticompliment immunoflourescence,

confirmed by western blot. He seemed to think they are a very good

thorough lab, but he isn't a clinician either. The test through them is

only 24.00, so I'm going to run it as a preliminary. My doctor said

that test shouldn't give a false positive, but would likely give a false

neg. If it's neg. I may not do the IgeneX tests, which are a pretty

penny, but I still need more data to make a decision. Just in case, I

got a prescription for amoxicillin to do a challenge test with IgeneX

where you take antibiotics to shed/flush the organisms out and collect 3

urine samples. This test is around 200.00 I think. Info on this is

available at the IgeneX web site, or call them if you can't find it.

And Al, I'm interested in the hyperbaric for lyme info as well, if you

could post or send to me.

>>Hi Nelly,

        I would think it's Nick of Igenex Labs,.

just my guess.   Hyperbaric Oxygen is still the best treatment for

Lyme from what I'm

hearing & reading. I've already emailed you the details on that a few

weeks ago.

Al

Re: Re: to Ken re: stats >lyme tests<

wrote:

My wife just happened to meet the main lyme and tick borne disease

studier guy in northern california yesterday. He said there's a new

spirochete that they're finding, but they aren't sure if it's

transmissible to humans yet.

Hi ,

Who might this " main lyme studier guy " be?

Nelly <

This list is intended for patients to share personal experiences with

each

other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

----------------------------------------------e

BTW: Did you buy that new car yet?

If not, check this site out.

They're called CarsDirect.com and it's a pretty sweet way to buy a car.

1/6847/5/_/531724/_/966393089/

----------------------------------------------e

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.