Re: Tony - reminicsing

[Guest guest]

Yeah, Tony, I remember her too. She was blown away when she realized

what was going on. She was a smart cookie too. But there were

others, even before I met you, but they never insisted like you did.

They just disappeared before getting yelled off the forums for not

really having had CFS or FMS if they were now better. Nothing like

the word infection or " cure " to cause World War 3 on a discussion

forum back then, right? :-)

Until you appeared I didn't have the tools to put 2+2 together for

myself. The ONLY talk of bacterial infection back then was on

Nicholson and Mycoplasma, and that was very controversial. Plus,

anyone who tried to discuss it was yelled off with the

admonition " CFS has no CAUSE!!! " (I never could get over that one).

There was a report on the thyroid forum that the Greeks had

discovered that hypothyroid patients were testing positive for

yersinia bacteria at a far higher rate than the normal population

and the concluding statement was that abx therapy should be

considered. It was ignored, but it was another indicator to me, like

the people with the miraculous i.v. abx healings, rattling around in

the back of my brain-fogged head, trying to get my attention. Until

you came on screaming and couldn't help but get my attention.

Remember, I had zero visible signs of any kind of infection and no

reason to believe I had an infection until you came on that CFS and

FMS forum yelling that people were dying from simple bacterial

infections and doing nothing about it. That they were wasting their

time and money, spending thousands on supplements and pain killers

and sleep meds (which didn't go over well). After trying to

understand your posts about cultures and blood smears and gram

negative and gram positive, which was like reading greek,

(especially as I was so brain fogged back then), I finally started

asking myself where some kind of infection might be originating in

my own body and remembered a crown that had given me problems a few

years before, and started looking there (and you hooked me up with a

local woman who was dealing with the same kind of infection but was

a couple years ahead of me as far as dealing with doctors), and boy,

I didn't like what I found. Talk about a can of worms. Seriously

infected wisdom teeth, and it all went down hill from there (sinuses

too) as far as realizing the extent of the infection and its impact

on my body. But the good news was, I finally started taking abx

regularly and seeing major improvements, even if sometimes only

temporary, and then got more courage to take higher doses and pay

attention to my body's reactions, and am now at a point where the

brain fog is gone, my energy's up, my pain is gone.

As always, I'm very grateful for your ranting and raving, and your

encouragement and support (I always knew you'd do anything within

your power to help), otherwise I'd never have gotten this far, or

been willing to look at so many different therapy modalities that

targeted infection. I often thought you probably saved my life,

because a few times, I truly thought I might not recover at all.

Maybe I was dying. I'd be too weak to do anything and you'd

intercede, talk to my doc for me so he'd know what to do. I truly

believe you saved me. I've watched so many really sick people with

bone infection try so many intense and expensive therapies, and I

would never have known about any of them if not for your insistence

that we've got to investigate every possible avenue to beat these

bugs. It empowered me, to say the least, I was no longer all over

the map, and it made me bold and able to make decisions that might

not fit the norm, as long as I could tell they were really working

for me. That's when I started throwing most everything I'd been

doing up til then, out the window, because it wasn't working, not

really.

I used to go back to some of those forums sometimes (in your place,

since you were banned from all of them, lol!) and try to talk about

new findings in infection but they never wanted to hear it.

CFSExperimental was the only group that was broad minded enough to

entertain the notion (although people could get pretty riled up

there too, considering more people believed in viral infections),

and of course there was the Mycoplasma group, which didn't take

posts. Immunesupport, too, was always on the leading edge, at least

as far as making new theories public, and the lyme forums were

further along in the process of understanding infection.

But this is the first group that I know of that seriously discusses

all types of infection as a major cause of chronic illness, so I

guess we've made some progress after all, even if it's taken years.

Thank goodness there are now researchers out there opening people's

eyes to the destructive nature of various bacteria. Regardless of

the strain, or our individual dx's, we're realizing that we're all

suffering from similar effects and often benefitting from the same

or similar treatment approaches.

penny

> > >

> > > > He took VERY high dose abx, and he's well. I know others

like

> him,

> > > > went into the hospital, contracted staph which almost killed

> them

> > > but

> > > > were saved from death by high, high dose i.v. abx, and waht

do

> yo

> > > > know, they walked out of the hospital with their FMS/CFS

> cured.

> > >

> > > I'd definitely read closely if you have the energy to tell us

> about

> > > each of these people, their hx of illness, their labs at

various

> > > times, what tx they did prior to hospitalization, the drug

> regimes

> > > they took in the hospital, whether they are now able to do

heavy

> > > exercise, how long theyve been cured, etc etc - in short

> everything

> > > remotely relevant. And whether you know others with a similar

> > > trajectory who *didnt* get cured. I know some others on here

> would

> > pay

> > > close attention too.

[Guest guest]

Penny,

>CFSExperimental was the only group that was broad minded enough to >entertain the notion (although people could get pretty riled up >there too, considering more people believed in viral infections

I have been on CFSExperimental since it was created (in fact even before that, when it was owned by Clements, does anyone remember, in the 90s?) and I ALWAYS talked about bacterial infections and abx. I don't think I was ever yelled off from other forums for mentioning bacterial infections nor was I told I didn't have CFS.

I became ill in late 81 (mainly gut symptoms with low-grade fever weight loss and fatigue) and a few months later developed a very nice EM Lyme rash. Doctors in Sydney-Australia made me look such a fool for insisting it was infectious that I nearly lost it. Not only was I desperately ill but I had to fight single-handedly against the whole entire world!

The 80s were one long and absolutely incredible struggle on all fronts having lost absolutely everything-health, job, husband, friends, family (I don't think I am forgetting anything:)). I had the most incredible struggle with the %à§! & medical ç%!!!!ssss to get abx and stay alive.

BTW, Penny, Flagyl (metronidazole) was the abx that REALLY made a difference back then, it made me feel cured. I remain convinced that if I had been able to stay on it for a decent period at the time, I would have had a good chance of a complete recovery.

And all these years down the track, and after many other adventures including many further tick-bites, Tinidazole is still the abx that can get me vertical and functioning within hours of taking it. When I am really, really bad, that's what I reach for (again a few days ago).

I don't think you should feel terrified of Flagyl, although it can give me really bad headaches (just about everything that works does after a few days anyway), it is an absolute must for me. It saved my present husband's brain too on many occasions, and he has got to keep his job as I certainly can't work for a living.

Nelly

[Guest guest]

Thanks Nelly,

Yes, people like you have kept the fires burning (and probably

helped plant the idea in my head). I don't think you were on many of

the other CFS/FM forums I frequented. Mostly at ABOUT.com and places

like that (started at the thyroid forums). They were really

dominated by people who believed there was no cure and never could

be a cure. I started frequenting Experimental, then the lyme forums

even though I didn't have lyme. They were the only well trafficked

forums with any reasonable kinds of discussions. And unique in that

they were determined to find some kind of effective treatments, not

just commiserate about their suffering.

Thanks for the encouragement about Flagyl.

penny

> Penny,

>

> >CFSExperimental was the only group that was broad minded enough

to

> >entertain the notion (although people could get pretty riled up

> >there too, considering more people believed in viral infections

>

> I have been on CFSExperimental since it was created (in fact even

before that, when it was owned by Clements, does anyone

remember, in the 90s?) and I ALWAYS talked about bacterial

infections and abx. I don't think I was ever yelled off from other

forums for mentioning bacterial infections nor was I told I didn't

have CFS.

>

> I became ill in late 81 (mainly gut symptoms with low-grade fever

weight loss and fatigue) and a few months later developed a very

nice EM Lyme rash. Doctors in Sydney-Australia made me look such a

fool for insisting it was infectious that I nearly lost it. Not only

was I desperately ill but I had to fight single-handedly against the

whole entire world!

>

> The 80s were one long and absolutely incredible struggle on all

fronts having lost absolutely everything-health, job, husband,

friends, family (I don't think I am forgetting anything:)). I had

the most incredible struggle with the %à§! & medical ç%!!!!ssss to

get abx and stay alive.

>

> BTW, Penny, Flagyl (metronidazole) was the abx that REALLY made a

difference back then, it made me feel cured. I remain convinced that

if I had been able to stay on it for a decent period at the time, I

would have had a good chance of a complete recovery.

>

> And all these years down the track, and after many other

adventures including many further tick-bites, Tinidazole is still

the abx that can get me vertical and functioning within hours of

taking it. When I am really, really bad, that's what I reach for

(again a few days ago).

>

> I don't think you should feel terrified of Flagyl, although it can

give me really bad headaches (just about everything that works does

after a few days anyway), it is an absolute must for me. It saved my

present husband's brain too on many occasions, and he has got to

keep his job as I certainly can't work for a living.

>

> Nelly

[Guest guest]

I also had poor luck trying to tell another forum (idiopathic pelvic

pain, often with multisystemic symptoms) about infection models of

various pathologies. I got the boot, despite being altogether

evidential - and also deferential, as those guys were my first

teachers, and showed me how to get rid of my pelvic pain.

Discussion of infection explicitly has never been allowed there, so I

was just glad my stuff didnt get deleted. I guess no one wants to

admit they might be a big old germbag, too bad what they want dont

mean nothin.

People are dumb, as was I. I thought " well, I dont have a fever so

infection cant possibly be involved. " As if I knew ANYthing of the

sort. Partly this error arose because early on I often felt more

starved than flu-ish - but the greater problem was that I had alot to

learn about how to stop being so presumptuous.

To master reality, whether in discovering or manipulating it, you have

to bow down as its abject slave - that means always recognizing that

dogma is nothing, models are models, and nature is everything.