Re: probably being diagnosed tomorrow

[Guest guest]

Get rid of the infectious dr as they will not help you in the long run, but

cause you heartache. Find an LLMD and if u post your state someone will refer

you off list. Drs names are not to be mentioned on list. Once it is chronic you

are in for a long ride and need an LLMD for right treatment.

[ ] probably being diagnosed tomorrow

My daughter is going back to the infectious disease specialist tomorrow to get

the results of her bloodwork. My husband took her for the testing so I'm not

sure what they tested her for. They took so much blood she had to go in twice

because it was too much to draw at once...so they did test for a lot of stuff. I

know the doc mentioned testing for different autoimmune issues, and my husbamd

saw 'western blot' on the labwork.The doc said from her symptoms it does sound

like late stage lyme to her. My daughter is 8, and only weighs 50 pounds soaking

wet. What I believe is Lyme has made her such a sick and different child this

year. I think she's had the lyme for a few years...but this year she became a

different child. She went from a perpatually happy confident child who literally

never did a thing wrong, to a kid who has anxiety about everything and is

unhappy much of the time. She looks sick most of the time and odesn't feel well

most of the time. So my question is what do I expect now? Is it most common

and/or effective to go with antibiotics? I read somewhere that she's going to

get pretty sick when she starts treatment...how does that go? Any information

would be much appreciated. I know next to nothing about Lyme and haven't had

time over the past few weeks to research

[Guest guest]

Also please make sure all your doctors, e.g., dentists, neurologists,

rheumatologists, et al, are lyme literate.

________________________________

From: fsmfarms <fsmfarms@...>

Sent: Tue, April 12, 2011 12:58:28 PM

Subject: Re: [ ] probably being diagnosed tomorrow

Get rid of the infectious dr as they will not help you in the long run, but

cause you heartache. Find an LLMD and if u post your state someone will refer

you off list. Drs names are not to be mentioned on list. Once it is chronic you

are in for a long ride and need an LLMD for right treatment.

[ ] probably being diagnosed tomorrow

My daughter is going back to the infectious disease specialist tomorrow to get

the results of her bloodwork. My husband took her for the testing so I'm not

sure what they tested her for. They took so much blood she had to go in twice

because it was too much to draw at once...so they did test for a lot of stuff. I

know the doc mentioned testing for different autoimmune issues, and my husbamd

saw 'western blot' on the labwork.The doc said from her symptoms it does sound

like late stage lyme to her. My daughter is 8, and only weighs 50 pounds soaking

wet. What I believe is Lyme has made her such a sick and different child this

year. I think she's had the lyme for a few years...but this year she became a

different child. She went from a perpatually happy confident child who literally

never did a thing wrong, to a kid who has anxiety about everything and is

unhappy much of the time. She looks sick most of the time and odesn't feel well

most of the time. So my question is what do I expect now? Is it most common

and/or effective to go with antibiotics? I read somewhere that she's going to

get pretty sick when she starts treatment...how does that go? Any information

would be much appreciated. I know next to nothing about Lyme and haven't had

time over the past few weeks to research

[Guest guest]

Lots of stuff here.

It's remarkable that your ID doctor is even willing to consider the possibility

that your daughter has " late-stage Lyme. " The infection disease community has

been clinging to an outdated model of Lyme disease that's rejected most of the

research done in the past 20 years, and is still generally unwilling to treat it

aggressively. So while your journey has begun with this doctor, odds are quite

good that it will not end there.

Two things:

First, given your daughter's symptoms, you should not take a negative Western

Blot at face value. It is a very poor test that's only slightly better than

throwing darts at a dartboard in terms of its ability to catch the disease. If

the test does come back negative, don't rule out Lyme until your daughter has

also had the full Lyme and co-infections panel offered by the Igenex lab in Palo

Alto, CA. Odds are very good that your ID doc will not consent to run this test,

but you can't be sure it's not Lyme until this test has been done.

Second, if the WB comes back positive, your doctor will probably give her a

month of doxycycline as a " cure. " This is appropriate treatment for someone

who's less than three months post-tickbite; but our long experience is that it

doesn't begin to do the job for late-stage Lyme. At this point, the spirochetes

have spread throughout the body, hiding inside your daughter's own cells (L-form

Lyme) and forming dormant cysts that are impervious to most antibiotics. These

three different forms require three different kinds of antibiotics, all

administered at the same time, to cure. And for most of us, treatment must run

anywhere from six months to two years. This approach is more like chemo than a

course of antibiotics in the way it hits the body; and yes, your daughter may

get quite sick while the bugs die off and the side effects of the antibiotics

hit.

Your next steps: Read the Burrascano guidelines (link to PDF is here:

<http://www.ilads.org/lyme_disease/treatment_guidelines.html>). Also read " Cure

Unknown " by Pamela Weintraub, and see if your local library has a copy of the

movie " Under Our Skin. " Finally, find out where the nearest ILADS-certified

Lyme-literate doctor is, because you're going to need one. (Tell this list where

you're located, and people will contact you off-list to recommend local

options.)

Finally, you need to know that your insurance company probably won't be of much

help through this process. They subscribe to the same model your ID doc does,

and haven't accepted that Lyme requires more aggressive treatment than those old

IDSA guidelines recommend. They'll pay for the month of doxy, but they may not

pay for your LLMD, the Igenex test, or for the more aggressive antibiotics that

will be required if you get a positive Igenex and decide to treat.

Wish the news was better, but all of us have been through some form of this

dance, and we'll help.

Sara

On Apr 11, 2011, at 1:25 03PM, Les wrote:

> My daughter is going back to the infectious disease specialist tomorrow to get

the results of her bloodwork. My husband took her for the testing so I'm not

sure what they tested her for. They took so much blood she had to go in twice

because it was too much to draw at once...so they did test for a lot of stuff. I

know the doc mentioned testing for different autoimmune issues, and my husbamd

saw 'western blot' on the labwork.The doc said from her symptoms it does sound

like late stage lyme to her. My daughter is 8, and only weighs 50 pounds soaking

wet. What I believe is Lyme has made her such a sick and different child this

year. I think she's had the lyme for a few years...but this year she became a

different child. She went from a perpatually happy confident child who literally

never did a thing wrong, to a kid who has anxiety about everything and is

unhappy much of the time. She looks sick most of the time and odesn't feel well

most of the time. So my question is what do I expect now? Is it most common

and/or effective to go with antibiotics? I read somewhere that she's going to

get pretty sick when she starts treatment...how does that go? Any information

would be much appreciated. I know next to nothing about Lyme and haven't had

time over the past few weeks to research

>

>

>

> ------------------------------------

>

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>

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>

[Guest guest]

I have three girls that have late stage lyme as do I...............we are all

here to help you but you MUST find a LLMD to help your daughter.......where do

you live???  Sorry as this is all so overwhelming at first..........hang in

there........you will get though this all and your daughter will get

better......but you must find a LLMD..............bless you   Diane (WI)

________________________________

From: fsmfarms <fsmfarms@...>

Sent: Tue, April 12, 2011 11:58:28 AM

Subject: Re: [ ] probably being diagnosed tomorrow

 

Get rid of the infectious dr as they will not help you in the long run, but

cause you heartache. Find an LLMD and if u post your state someone will refer

you off list. Drs names are not to be mentioned on list. Once it is chronic you

are in for a long ride and need an LLMD for right treatment.

[ ] probably being diagnosed tomorrow

My daughter is going back to the infectious disease specialist tomorrow to get

the results of her bloodwork. My husband took her for the testing so I'm not

sure what they tested her for. They took so much blood she had to go in twice

because it was too much to draw at once...so they did test for a lot of stuff. I

know the doc mentioned testing for different autoimmune issues, and my husbamd

saw 'western blot' on the labwork.The doc said from her symptoms it does sound

like late stage lyme to her. My daughter is 8, and only weighs 50 pounds soaking

wet. What I believe is Lyme has made her such a sick and different child this

year. I think she's had the lyme for a few years...but this year she became a

different child. She went from a perpatually happy confident child who literally

never did a thing wrong, to a kid who has anxiety about everything and is

unhappy much of the time. She looks sick most of the time and odesn't feel well

most of the time. So my question is what do I expect now? Is it most common

and/or effective to go with antibiotics? I read somewhere that she's going to

get pretty sick when she starts treatment...how does that go? Any information

would be much appreciated. I know next to nothing about Lyme and haven't had

time over the past few weeks to research

[Guest guest]

I am so bummed out right now. I was warned that this would be difficult and that

we'd probably get false negatives. I reall thought this lady was educated in

Lyme...nope. So The test came back negative....duh. It was the exact same test

as before...the IgG blood test. She's running the Western blot, as she says

" because I won't believe her otherwise " . So back to the drawing board. Oh, the

test she ran was for Lyme in Texas, and my daughter would have contracted it in

Georgia...I heard that was important in the testing. She said it wasn't

important to test state specific. So, what is the test I want from Iginex? I

thought it was the Western Blot. Back to the drawing board. I guess I need to

find an LLMD in Texas. I'm so sick of the medical community not being able to

provide my kids with the care they need...and with having to pay tons of money

to get them well