Re: Jill- /Tony/Babesia/chronic illness

[Guest guest]

Jill:

My maladies over the past 27 years cost me a marriage

(and I - the woman - lost the house, that I had designed

and 50% built) & financially ruined me by 30 years old.

This was all during the time I was receiving my first autoimmune

disease label - and I was fighting treatment (steroids).

I had no support. I lost 95% of my friends during that

divorce, and time period because 'I wouldn't take my medicine -.

I was under incredible pressure from my family 'to take my medince'

(which was steroids). I was the one deemed 'nuts'.. my X was

trying to get me committed.

I been very close to suicide twice (1978 and 1993 during

debilitating bed ridden flares). I learned to keep most things to

myself. People tire of listening if you 'look good'. I started

studying the immune system.

My last (Lyme)western blot (IgG) has been getting progressively

more positive (12 bands last time) and I'm asymptomatic. But I

started my Lyme therapy with just a positive PCR for Lyme- almost no

antibodies.

Why did I respond to a relatively short (by Lyme standards) period

of abx? I don't know, but the abx weren't the only thing was doing.

I had been keeping myself alive with the way I was feeding myself,

and supplements, life style and Alt therapies.

After reading about people taking Lyme therapy, I have to say

(lucky for me) I was a 'positive responder' to the abx - or my

choices were right, or the bugs weren't resistant. I can't give you

a exact answer on that one. Even the Dartmouth Ophth. can't beleive

the change in my eyes - and I don't hink he would beleive it if the

severity wasn't documented by another well known Opth... and with all

the $$ I paid these guys - it was really just to monitor me.. I

wouldn't submit to the kenalog injections into the backs of the eye

balls.

WHy did I respond to Artemos? I don't know that either. It's only

been recently that they've devised a western blot for Malaria (and

it's not available yet) There may be cross-reactivity between Babs

blots and Malaria. 2 of the bands I was positive for Babs are also

the bands + for Malaria in certain stages of the parasits life

cycle. Uncomplicated malaria gives symptoms similar to Babs. I could

have had Malaria for all I know as I'm one of the FEW

people that had a RBC profile documented (damaged RBCs, RBC

frangments in the blood, sky high (18K) WBC counts - fevers - and

remember no spleen consistant with malaria or babesia -

if the dummies (Drs) had done a blood smear in the past then I'd

know or if I had even known about Malaria (yes I was a dummy too)

I would have gotten one done- if even by a Vet.

Artemos is a drug not avaiable in the US. And US Dr.s won't

prescribe it. You, in the past have chastised for being a Vet

and making recommendations on Lyme therapy... so how do you think I

should respond to you, when you ask me about a non FDA, non US drug

that I procured, and took - knowing the risks- all the risks.

I'll talk about what I did- but I will not try and convince anyone

of doing what I did, nor convince them what to take or what doses.

I'm way W_A_Y more like Tony than any of you know - just maybe a

little more articulate. Neither Tony nor I EXPECT the medical

profession to heal us.

And the truth of it is that they don't expect to heal us, nor do they

particularily even CARE.

He took his health into his own hands. SO did I-

long long before I met the ALTDoc., long before I knew I had Lyme

that now helps me with Lyme...

I have a long history of working with and against the theories of

autoimmunity - and supposed 'genetic defects'.

EVERYONE with chronic illness has a tragic and sad story.

There are no exceptions no matter what the (disease) label.

It was suggested recently that I was ' self-serving ' by an internet

acquaintance, I think because I didn't give the answer the eprson

wanted.

After thinking about it - I had to agree.. I am self interested,

self serving and self educated when it comes to my illness. I call

that MY survival.

Sometimes I question just what the heck I'm still doing on these

boards. I think I'm going to have to review my own motives for

Barb

> > > > > > > Tony I'm curious your thoughts on the antifungals as

> > > > antibiotics.

> > > > > > >

> > > > > > > I now realize, with some new information I've been

given

> > that

> > > > > will

> > > > > > be

> > > > > > > out next year, that band 93 is diagnostic and that I

got

> > lyme

> > > > the

> > > > > > > first time at age 21 (summer, connecticut, atypical

rash

> > and

> > > > > joint

> > > > > > > soreness, no idea what I had) that resulted in episodic

> > weird

> > > > > > > inflammatory conditions and persistent infections off

and

> > on

> > > > for

> > > > > 20

> > > > > > > years. During that time I believe it was all fungal

(and

> > did

> > > > have

> > > > > > > fungal issues start up, since lyme is

immunosuppressive,

> > they

> > > > are

> > > > > > now

> > > > > > > figuring out it downregulates certain tcell mitogens,

> cd57

> > > and

> > > > > > > natural killer cells). However I used to feel better if

I

> > > took

> > > > > any

> > > > > > > antifungal, nizoral was what they had back then; even

> > > nystatin.

> > > > > > >

> > > > > > > Since Dr Schardt now has a protocol with diflucan...for

> > > > > lyme...that

> > > > > > > is helping some lymies, I am now wondering if the

> > antifungals

> > > > are

> > > > > > > viewed too narrowly. For instance nystatin interrupts

> > > > ergosterol

> > > > > in

> > > > > > > yeast, well who's to say lyme doesnt need that too,

after

> > > all,

> > > > > > lymies

> > > > > > > often find themselves with raised cholesterol, i.e.

lyme

> > > cannot

> > > > > > make

> > > > > > > some of its own fats and uses ours.

> > > > > > >

> > > > > > > Also, many of the antifungals end in azole and the

> > > > antiparasitics

> > > > > > in

> > > > > > > azole (flagyl, tinidazole), the latter are often

helpful

> in

> > > > lyme.

> > > > > > >

> > > > > > > I know you don't think so much of lyme but that's okay,

a

> > > book

> > > > > will

> > > > > > > come out next year that will blow your mind and all

> > > > > scientifically

> > > > > > > legal documented. BUt for now my question is actually

> more

> > > > > general.

> > > > > > > Have we overlooked antifungal efficacy in broader ways.

[Guest guest]

No way, Barb. I don't see you as self serving at all. At least from

my perspective you're serving all of us by sharing your experience

and success. I hope you'll rememember that when reviewing

your " motives " for being here.

You've given me a lot of hope. That's why I stay on these forums.

For the possibilities. And to share what might possibly help someone

else.

penny

" Barb Peck " wrote:

> After thinking about it - I had to agree.. I am self interested,

> self serving and self educated when it comes to my illness. I call

> that MY survival.

>

> Sometimes I question just what the heck I'm still doing on these

> boards. I think I'm going to have to review my own motives for

>

[Guest guest]

Barb...I sympathize. Or should I say empathize. I am now reframing my

entire adult life, the voodoo doll as you say, all due to relapsing

remitting illness from a spirochete changing antigens and manifesting

with strange afflictions in different organs...now I know I'm fine,

the spirochete is not. It's a fundamental shift in perception as well

as a lot of grieving over the fact that, the only sense I could make

of my life was that I had a defective immune system and I also was

being mysteriously tormented by unseen forces that periodically had

it in for me.

That was the only bizarro narrative that cohered, if it was not

spirochetes.

> Artemos is a drug not avaiable in the US. And US Dr.s won't

> prescribe it. You, in the past have chastised for being a Vet

> and making recommendations on Lyme therapy... so how do you think I

> should respond to you, when you ask me about a non FDA, non US drug

> that I procured, and took - knowing the risks- all the risks.

> I'll talk about what I did- but I will not try and convince anyone

> of doing what I did, nor convince them what to take or what doses.

Its not the same thing. really bugs me when he goes " we this,

we that " as if he's a doctor, and he and others adapted Schardt's

protocol which Schardt expressly DISAGREES with. I find that a bit

too glib, at least discuss it with Schardt. Schardt's the one who

figured out this mechanism by which flucanzole may work, and

explained why to use narrow penicillins. So...whatever...I think I

could get arthemos if I want, maybe I will try artemisinin first. I

have that here. It would be my choice, not seeking medical advice

from you...just information on your experience.

Can you tell me a bit about the bee venom again? How much did you

use? Randy Baker's protocol is to give multiple shots equiv to 1/4

bee sting in 15-50 spots.

[Guest guest]

Barb, even now in this age of the internet, it takes a long time for

most of us to get a clue about what's going on. How did you figure out

to buck the system and start looking for other answers?

- Kate

On Saturday, June 11, 2005, at 12:15 PM, Barb Peck wrote:

>   I'm way W_A_Y more like Tony than any of you know - just maybe a

> little more articulate.  Neither Tony nor I EXPECT the medical

> profession to heal us.

> And the truth of it is that they don't expect to heal us, nor do they

> particularily even CARE.  

> He took his health into his own hands.  SO did I-

> long long before I met the ALTDoc., long before I knew I had Lyme

> that now helps me with Lyme...

> I have a long history of working with and against the theories of

> autoimmunity - and supposed 'genetic defects'.