Re: 'Real' vs In-Vitro Effects, and Alternative Cyst-Busters

[Guest guest]

--- In infections , " Schaafsma "

<compucruz@y...> wrote [iN PART]

> Someone should compile a list of everything that might reasonably

be

> suspected of having action against cyst forms. It does worry me

that

> I may not be able to tolerate flagyl. I'm not sure yet whether I

can

> tolerate any of the azoles (pronounce that right, and it sounds

just

> like...)

>

> Anybody got a list they'd like to share of alternative cyst-busters?

,

No list of alternatives, but an N=1 experience of getting MUCH better

on several different monotherapies. I have an allergy to Flagyl

(which was a joy to discover...) and therefore no doc will tread into

*zole land with me. Serious allergies to penicillin and (after

exposure) cephalosporins also limit my playing field.

Despite this, I've gone from being bedridden with meningitis and

needing to re-learn to walk (twice) and read (once) to functioning

quite well and returning to (demanding) work. Once, IV claforan did

it for me, once IV vanco followed by primaxin did it, and once IV

primaxin did it. Each time I lasted between 1.5-5 years afterwards

well enough to work PT or FT (interestingly, remissions lasted longer

when I was only working PT).

As I said, N=1, but a nice robust round of abx can do wonders even as

a monotherapy and in the absence of " cyst busters. " I've had this

stupid disease since August of '89, before so much was known.

Indeed,

I was only tested for co-infections this year with my current

recurrence because the last time I relapsed, this still wasn't common

knowledge even amongst the most research-oriented docs. I did test

weakly positive to Babesia, so even in the absence of any treatment

for that over all these years, I still got so much of my life back

with " basic " treatment.

Moreover, my LLMD (Dr. KL in NY) has never even mentioned the " cyst "

stuff to me, let alone treatment to address it specifically. And

this

time, despite my bedridden (thank goodness for laptops!) status

again,

we're starting on orals (mino & zith).

In short, the possibility exists to do quite well with basic

monotherapy in the absence of said cyst-addressing meds and potential

co-infection therapy. Perhaps even better health would be achieved

with such treatments, nevertheless, as someone who has literally been

deathly ill on a few occassions, the difference can be absolutely

dramatic.

None of this is to discount the many instances of treatment failures

that exist. However, it is meant to discount an notions, hypotheses,

or false statements of fact that suggest that " cyst busters, " co-

infection treatment, avoidance of Rocephin/Claforan or combination

Abx

therapy are necessary pre-requisites for dramatic improvements in

health status.

[Guest guest]

Thanks much, DM! It is a good reminder, and very welcome at the

moment. I am not surprised about the longer recovery working part

time. It seems clear to me that my life must be lived differently

from now on, whether I improve dramatically or not. I used to use

myself unsparingly, now I must learn to conserve and be more

judicious.

1989! That's a long time. What a road you've traveled. If I ran the

universe you would get a medal for the marathon performance and a

big, valid-for-life " Get Out of Hell Free " card.

I watched " Meet the Fouckers " the other night, the comedy with Ben

Stiller, Barbra Streisand, Deniro and...somebody else.

Anyhow, there's this running joke about a baby whose first word

sounds almost exactly like " azzzzooole " which is now all I can think

of when I see the drug names.

Hope this day is treating you alright. I have had my cheerios and am

going to bed.

> --- In infections , " Schaafsma "

> <compucruz@y...> wrote [iN PART]

>

>

> > Someone should compile a list of everything that might reasonably

> be

> > suspected of having action against cyst forms. It does worry me

> that

> > I may not be able to tolerate flagyl. I'm not sure yet whether I

> can

> > tolerate any of the azoles (pronounce that right, and it sounds

> just

> > like...)

> >

> > Anybody got a list they'd like to share of alternative cyst-

busters?

>

> ,

>

> No list of alternatives, but an N=1 experience of getting MUCH

better

> on several different monotherapies. I have an allergy to Flagyl

> (which was a joy to discover...) and therefore no doc will tread

into

> *zole land with me. Serious allergies to penicillin and (after

> exposure) cephalosporins also limit my playing field.

>

> Despite this, I've gone from being bedridden with meningitis and

> needing to re-learn to walk (twice) and read (once) to functioning

> quite well and returning to (demanding) work. Once, IV claforan

did

> it for me, once IV vanco followed by primaxin did it, and once IV

> primaxin did it. Each time I lasted between 1.5-5 years

afterwards

> well enough to work PT or FT (interestingly, remissions lasted

longer

> when I was only working PT).

>

> As I said, N=1, but a nice robust round of abx can do wonders even

as

> a monotherapy and in the absence of " cyst busters. " I've had this

> stupid disease since August of '89, before so much was known.

> Indeed,

> I was only tested for co-infections this year with my current

> recurrence because the last time I relapsed, this still wasn't

common

> knowledge even amongst the most research-oriented docs. I did

test

> weakly positive to Babesia, so even in the absence of any

treatment

> for that over all these years, I still got so much of my life back

> with " basic " treatment.

>

> Moreover, my LLMD (Dr. KL in NY) has never even mentioned

the " cyst "

> stuff to me, let alone treatment to address it specifically. And

> this

> time, despite my bedridden (thank goodness for laptops!) status

> again,

> we're starting on orals (mino & zith).

>

> In short, the possibility exists to do quite well with basic

> monotherapy in the absence of said cyst-addressing meds and

potential

> co-infection therapy. Perhaps even better health would be

achieved

> with such treatments, nevertheless, as someone who has literally

been

> deathly ill on a few occassions, the difference can be absolutely

> dramatic.

>

> None of this is to discount the many instances of treatment

failures

> that exist. However, it is meant to discount an notions,

hypotheses,

> or false statements of fact that suggest that " cyst busters, " co-

> infection treatment, avoidance of Rocephin/Claforan or combination

> Abx

> therapy are necessary pre-requisites for dramatic improvements in

> health status.