Treatment Decision to Make:Guai and Whey OR Abx

[Guest guest]

Ken and others,

I'm about to make a rather big decision re which treatment to start. I

am having a surge in pain that's just too much to stay put and do nothing

new, despite fears of new treatments.

I was moving in the direction of guai and if I could find a way to pay

for it a good denatured whey, because the posts here on the

phosphate-glutathione connections have made a lot of sense to me.

However, yesterday, when I saw my still-new CFS doc and presented him

with my problems with a dreadful pain surge, he asked me if I wanted to

try doxy.

I had brought him lots of the St Amand stuff from the two guai websites

and lots of stuff from this list on the glutathione-phosphate connection

(thanks to the hard work and smarts of many of you). He was definitely

interested, took MY copies (I have to now reprint them all out using my

paper and my ink and my time!!!!) and said he'd read them but wasn't

prepared to prescribe or recommend yet. Understandable.

BUT, when I reminded him that he'd wanted me to do a Great Smokies gut

test from last time he of course said not now, since we're probably going

to be messing up your gut BIG TIME and urged me to quadruple my

probiotic!

Yet at last visit he said you gotta deal with your gut first if you wanna

make progress.

I had a difficult night. I know that docs are human and when you come in

in terrible pain and report a big trough their instinct is to intervene

fast. He knew of a woman who'd gotten quick relieve on doxy for the bugs

we all know it can kill and which I'm postive for (myco and chlamydia).

Yet I'm thinking, wait a minute. Maybe the sensible thing would be NOT

to risk messing up my gut more in the process of killing those bugs

(maybe, and also risking a lousy reaction to doxy, too). Maybe the

staging should be:

1................. do the Great Smokies test

2..................give him time to absorb the guai and glutathione stuff

3................. I'm on a waiting list at his office for a combo

palliative treatment that helps many but not all consisting of a certain

type of message combined with " homeopathic " injections of bee venom and

some other stuff, for pain

4................. do increase the probiotics (ARG L plantarum,

salivarius, rhamnosus (spelling duh)

5................. maybe go the guai route because it might be kinder to

my gut than abx and build up my immune system (I had a very very high

Candida count last Gt Smokies test.

Bottom line is I wanna treat in a way that doesn't invalid me long

because I must not be homebound at the moment. I cannot afford that for

medical and psychic reasons, and even financial ones.

I'll make the decision. It's a tough call. If anyone cares to comment,

fine, I'd appreciate it. And until I get that pain relief treatment

opportunity I do have some control over pain--and that's being more

careful , boringly so, to titrate activities, which is hard for me

because I've been ill since l980 and I've been around that block so many

times I find it exasperating. Yet that's my only mode of hope, plus

lowering my reaction to stressful events, to control pain without leaning

on opiates, which I mustn't allow myself to do as that can cause yet

another medical problem.

Judith

On Wed, 06 Dec 2000 21:51:33 -0000 KenL@... writes:

> Hi Hope,

> Treating mycoplasma caused CFIDS is usually 9 months of

> antibiotics (at least). If you have a positive Hemex result and do

> anticoagulants (heparin) first, the time may decrease significantly

> [no studies to confirm it].

>

> I've been on antibiotics for 14 months, my wife for 11 months. We

> are

> both off them --- provisionally. Any signs of problems, we are back

>

> on them without hesistancy.

>

> Taking antibiotics is not a picnic. The Herxheimer reaction can be

> very severe -- you may get sicker than a dog. It is NOT from the

> antibiotics, but from the bacteria that you are killing off.

>

> There are many myths about the risks of antibiotics... The key issue

>

> is what you are capable of putting up with. My wife was unable to

> walk to the bathroom when she first started antibiotics - they made

> her that sick.

>

> This year she celebrated thanksgiving with family on Thurdsay and

> then put on a 2nd thanksgiving feast the next day -- and did not

> crash. Last year (pre-antibiotics), she crashed just attending

> thanksgiving.

>

> Two egroups lists

>

> CFSFM_Antibiotics

> cfs_mycoplasma

>

>

> Ken

>

> > Hi everyone.....I hope someone can help me with this one. I was

> just

> > diagnosed with acute mycoplasma pneumonia by my cfids doc and was

> given

> > doxycycline (not sure of spelling!) to take twice daily for 6

> weeks. Has

> > anyone else had this infection? I'm concerned about side effects

> of

> the

> > antibiotic (if it's harsh on the stomach), how long it takes to

> feel better

> > and where I can find more information on mycoplasma infections and

>

> cfids

> > patients particularly.

>

>

>

> -------------------------- eGroups Sponsor

>

> 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.

>

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[Guest guest]

Judith,

From what I know of your case from your posts, I think that all the

things you are considering could very well be helpful. I realize

from what you've said in the past that cost is an important factor,

but I hope that you can do ALL of them! However, I don't think anyone

can guarantee that several of these things won't tend to make you more

homebound. Those who use guaifenesin testify that it makes you feel

worse initially if it is doing its job, and that you go through

" cycling. " Those who use nondenatured whey protein report " herxing. "

Those who have taken antibiotics have experienced " herxing " as well.

It may well be that anything that effectively goes after the problem

will make you feel worse for a while, and it may also be true (as

I have come to believe) that a combined treatment is necessary to make

real long-term progress. By " combined treatment " I mean general

nutrition, nutrition specifically for the immune system, support for

the GI tract (depending on what the problems are there), glutathione

building (using whey and alpha lipoic acid), guaifenesin, a

high-protein--low-carbo diet, and anti-pathogens tailored to go after

the particular ones you have. I guess I would favor the CDSA test

first, to help determine what your GI tract needs.

I don't know if this helps you to resolve your dilemma, but this is

(these are?) my two cents. Of course, I need to add that I am not

licensed to diagnose or treat disease, so my suggestions should be

viewed simply as information to be considered together with your

doctor.

Rich

> > > Hi everyone.....I hope someone can help me with this one. I was

> > just

> > > diagnosed with acute mycoplasma pneumonia by my cfids doc and

was

> > given

> > > doxycycline (not sure of spelling!) to take twice daily for 6

> > weeks. Has

> > > anyone else had this infection? I'm concerned about side effects

> > of

> > the

> > > antibiotic (if it's harsh on the stomach), how long it takes to

> > feel better

> > > and where I can find more information on mycoplasma infections

and

> >

> > cfids

> > > patients particularly.

> >

> >

> >

> > -------------------------- eGroups Sponsor

> >

> > 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.

> >

>

> ________________________________________________________________

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