Re: cortef- need some update please/Teitalbaum,Goldstein&Ampligen failures,etc.

[Guest guest]

> --- In ,

>

> Although he included a few very modest " little helpers " such as

some known sleep meds, etc that many of us use to simply hang-on,

the " Fatantistic " promise of his suggested treatments I believe has

since been proven an outright and objective falsehood for the

broader spectrum of the ME/CFS population.

>

>

>

> At the end of Teitalbaums book, he recommends that people consult

> Jay Goldstein, MD who was(now retired) a CFS physician he looked

up to and suggested patients consult him if some how his " Fantastic "

suggestions didn't take. The problem with this book ending

suggestion is Dr Goldstein is someone who asserted a significant

improvement rate in 95% of ME/CFS patients who went through his own

protocol promoted in his 1996 book " Betrayal of the Brain " .

>

>

>

> This book had some interesting observations about ME/CFS and Dr

Goldstein is a very intelligent man, but unfortunately and for

whatever reason(s) he made his assertions regarding his protocol,

the results never panned out as implied for the broader spectrum of

the ME/CFS patient population who tried it.

>

>

>

> The upside of the patient populations experimentations over the

years with Teitalbaum, Goldstein and I also think its fair to

include Ampligen as well as numerous other vanquished protocols is

to recognize these essential failures as such. This recognition

allows for clearer insight, understanding and a more sober focus to

bare on current and future treatment suggestions.

>

>

> Our job as patients is to get well and to stay efficiently on

target until we do so. Our job is not to waddle in false hopes,

false dawns and being sentimental about sincerely intelligent

doctors, treatments and organizations for that matter that we can

discern aren't delivering.

>

>

>

> Hall

I am sorry but you are SO WRONG.

By getting rid of the mercury in my amalgams and body, treating my

adrenals with LOW DOSE Prednisone (now 2.5mg only = 10

hydrocortisone, previously 5 mg for one year), treating my thyroid

with Armour plus 25 mcg T4, doing the Kane Detoxx protocol and

finally treating the infections with Samento I AM NOW WELL AND NO

LONGER HAVE ME OR CFS.

If I hadn't done the lot it wouldn't have worked and this is

probably where some go wrong. You have to systematically treat ALL

aspects of this illness in order to recover.

Treating the adrenals is probably essential to getting well if you

have been ill for a long time plus not treating underfunctioning

thyroids is probably the most common mistake and the reason why

people have no energy and muscle aches/pains.

All you have to do is to take your early morning temperatures on 3

consecutive days running. If it is below 97.6 then you have low

metabolism and underfunctioning thyroid with possible adrenal

involvement too.

The problem then is to treat it with the right treatment and dose

which I agree can be difficult. Most people are just put on

thyroxine (T4) and this doesn't work for many but they would do well

on Armour which contains everything your thyroid makes. Doctors are

extremely ignorant about the thyroid and know nothing about the

adrenals apart from Cushings (too much cortisol) and s (too

little or none). They don't recognise that there are degress of

underactivity of the adrenals as well as the thyroid.

It is also necessary to find out why the endocrine system has been

hit. In my case it was mercury poisoning PLUS borrelia and co-

infections in my blood. I bet this is the case for a huge number of

CFS/ME sufferers but traditional doctors are ignorant about this too.

Pam

[Guest guest]

> > --- In ,

> >

> > Although he included a few very modest " little helpers " such as

> some known sleep meds, etc that many of us use to simply hang-on,

> the " Fatantistic " promise of his suggested treatments I believe has

> since been proven an outright and objective falsehood for the

> broader spectrum of the ME/CFS population.

> >

> >

> >

> > At the end of Teitalbaums book, he recommends that people consult

> > Jay Goldstein, MD who was(now retired) a CFS physician he looked

> up to and suggested patients consult him if some how his " Fantastic "

> suggestions didn't take. The problem with this book ending

> suggestion is Dr Goldstein is someone who asserted a significant

> improvement rate in 95% of ME/CFS patients who went through his own

> protocol promoted in his 1996 book " Betrayal of the Brain " .

> >

> >

> >

> > This book had some interesting observations about ME/CFS and Dr

> Goldstein is a very intelligent man, but unfortunately and for

> whatever reason(s) he made his assertions regarding his protocol,

> the results never panned out as implied for the broader spectrum of

> the ME/CFS patient population who tried it.

> >

> >

> >

> > The upside of the patient populations experimentations over the

> years with Teitalbaum, Goldstein and I also think its fair to

> include Ampligen as well as numerous other vanquished protocols is

> to recognize these essential failures as such. This recognition

> allows for clearer insight, understanding and a more sober focus to

> bare on current and future treatment suggestions.

> >

> >

> > Our job as patients is to get well and to stay efficiently on

> target until we do so. Our job is not to waddle in false hopes,

> false dawns and being sentimental about sincerely intelligent

> doctors, treatments and organizations for that matter that we can

> discern aren't delivering.

> >

> >

> >

> > Hall

>

[Guest guest]

> --- In ,

> Hi Pam,

>

>

>

> I stand by what I stated 100%. I know its on target. Perhaps you

missed the " broad spectrum... " qualifying statement I included in my

comments.

>

>

>

> I did that in recognition of the rare exception of an ME/CFS

diagnosed patient who has seemed to have gotten better and

attributes there good outcome to one of those older and generally

failed protocols. Also, your noting the use of more recently

promoted protocols as being intetegral to your success.

>

>

>

> Thus, it seems even your example of recent success is not a

genuinely unqualified endorsement of those old protocols I'm

underscoring as having failed their claims. For the broad spectrum

of people in this patient population who tried them, they did fail

their claims.

>

>

>

> Eitherway, congratulations on your recent success and I accept

your claim of apparent compelete resolution of ME/CFS. Your are the

CFIDS Houdini we all hope to be and I hope it sticks.

>

>

>

> Thanks,

>

>

>

>

>

Hi

Thanks for your kind comments and I can say that 100% I have beaten

this illness. I have been well for a month now and this has never

happened to me before during the whole of the illness, I just knew

it had gone one month ago. Now my job is to help others so that

they too can feel so good.

I have still had a nasty cold virus which I caught from my husband

but my immune system dealt with it in 2 days, probably faster than

a " normal " person and it did make me feel very unwell at the time

but by the 3rd day I had bounced back and was fully well again with

all my energy back to a level I still find unbelievable.

I have got to update my website to include the bugs in the blood bit

(treatment with Samento) but you might like to have a look -

www.bertiedog.com.

Again I stress that treatment of the adrenals and thyroid is

paramount if you are to stand ANY chance of beating this illness if

you have been ill for some time.

Best Wishes

Pam

[Guest guest]

Glad you are feeling so well. Just keep on top of it. I was " cured " for almost

two years, but then got sicker than ever. Fortunately I also have been

improving and am doing better than in a long time. The thyroid was a huge help;

I can't help but wonder if most PWC's wouldn't benefit a lot from it. But I

still have constant infections. Personally I have a hard time trusting " cures "

after having it come back worse than ever. Just keep up your vigilance.

Maybe the key is to fight hard when symptoms start to sneak back. At least we

have means to fight with now, much more than 4-5 years ago.

Doris

----- Original Message -----

Hi

Thanks for your kind comments and I can say that 100% I have beaten

this illness. I have been well for a month now and this has never

happened to me before during the whole of the illness, I just knew

it had gone one month ago. Now my job is to help others so that

they too can feel so good.

Best Wishes

Pam