Dr. Teitelbaum

[Guest guest]

Have you read his book? I would do that first and save time in your visits

(if you decide to go to him). But my personal feeling is that he is

addressing people with chronic fatigue, but NOT chronic fatigue syndrome.

If you happen to be newly diagnosed or have some specific things he

addresses, fine. But his treatments don't do anything for people that have

the true profile of CFIDS.

Doris

Dr. Teitelbaum

>

> Has anyone gone to see Dr. Teitelbaum ?

>

> If so what has been your experience and improvement ?

>

> His books and web site make the protocols sound great.

>

> Doe he Actually treat patients or just develop a protocol that you have to

> find a Local Dr. to implement ?

>

[Guest guest]

Has anyone gone to see Dr. Teitelbaum ?

If so what has been your experience and improvement ?

His books and web site make the protocols sound great.

Doe he Actually treat patients or just develop a protocol that you have to

find a Local Dr. to implement ?

-

[Guest guest]

And how many are cured?

Carole PS. Is there anyone that is cured?:

[Guest guest]

In defense of him, he released a scientific study done on people with CFS

using his treatment protocols, and he was able to help the vast majority of

patients to have some improvement, and some with total improvement. In

addition, I have CFS and FM, and I've followed some of his treatment

protocols and had some improvements. I'm on an e-mail list that his wife is

on, and she's discussed his practice some with that list, and I think it is

a mistake to assume that he is only dealing with people who are tired, and

not PWC's. From what I've been told by her and correspondence that I've had

with Dr. Tietelbaum personally, his practice focuses on CFS and FM. It's

only coincidence that some of his protocols help people who have other

problems.

But to be fair, I haven't been an actual patient, and I am far from well,

and I was unable to tolerate some of his treatment protocols. But then, I

have my own unique problems complicating things. (IBS, MCS and RA in

addition to CFS/FM)

lindaj@...

Dr. Teitelbaum

>

>

> >

> > Has anyone gone to see Dr. Teitelbaum ?

> >

> > If so what has been your experience and improvement ?

> >

> > His books and web site make the protocols sound great.

> >

> > Doe he Actually treat patients or just develop a protocol that you have

to

> > find a Local Dr. to implement ?

> >

>

>

>

>

> 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.

>

>

[Guest guest]

I've seen it written in his website but right now I don't remember exactly

where. I'll try to find out more specifics and share it with you.

Amy S.

[Guest guest]

My statements are based on the book. I re-read it recently and came to that

conclusion. Most of it is very basic, stuff that any decent doctor would

have ruled out before we became labelled CFIDS. Obviously, I realize some

PWC's have some of the underlying problems he addresses, which haven't been

caught sooner. But there's nothing new or even that useful in his books

from my standpoint. (To be clear, it was useful 8 years ago when I was

trying to figure out what I had. But since then it seems to me that while

everything he talks about might be a factor in PWC's, none of them are the

cause so his treatments it don't cure anything.)

Doris

Re: Dr. Teitelbaum

> In defense of him, he released a scientific study done on people with CFS

> using his treatment protocols, and he was able to help the vast majority

of

> patients to have some improvement, and some with total improvement. In

> addition, I have CFS and FM, and I've followed some of his treatment

> protocols and had some improvements. I'm on an e-mail list that his wife

is

> on, and she's discussed his practice some with that list, and I think it

is

> a mistake to assume that he is only dealing with people who are tired, and

> not PWC's. From what I've been told by her and correspondence that I've

had

> with Dr. Tietelbaum personally, his practice focuses on CFS and FM. It's

> only coincidence that some of his protocols help people who have other

> problems.

>

> But to be fair, I haven't been an actual patient, and I am far from well,

> and I was unable to tolerate some of his treatment protocols. But then, I

> have my own unique problems complicating things. (IBS, MCS and RA in

> addition to CFS/FM)

>

>

> lindaj@...

>

[Guest guest]

Where did u get the $5800 figure from ?

I had not been able to locate a cost for him.

Re: Dr. Teitelbaum

I read his book. But he charges $5800 for a visit, therefore I don't think

I'll go see him.

Amy S.

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.

[Guest guest]

I thought Carol Silverling from Cheney's last study was pretty much cured.

Did I misunderstand her post ?

Re: Dr. Teitelbaum

And how many are cured?

Carole PS. Is there anyone that is cured?:

[Guest guest]

Thanks for the summary. I don't agree with everything your have written that he

said, but it is still great to see what he said and that you took the time to

write it down.

Doris

[Guest guest]

Thanks for this great report

I have had so many endocrine tests and they all get dismissed by the

endo. I think they look at them when they - yet I am convinced that it

is all around the hypothalmus and adrenal

My thyroid function Free T4 = 16.8 pmol/L (NR 11.8-24.6) and TSH =0.806

mIU/L (NR 0.27-4.200)

Competly normal - as you say this may not mean that it is

underfunctioning - but how do you know?

My salivary Cortisal was all normal. Yet taking HC makes me feel better

so it seems it is related

Thanks Again

Dr. Teitelbaum

I went to see Dr. Tietelbaum last Thursday night at our local health

food store in Alameda, CA. He spoke for free for 2 hours. He spoke very

quickly and covered a lot of ground. He stayed after and answered

questions until everyone's questions were answered. I really think he's

on the right track for CFIDS, not just CFS as I had been told to expect.

He has written an updated version of FROM FATIGUED TO FANTASTIC and I

got a free copy for being one of the first 20 people there. The room was

pretty full. I think there were about 100 people there.

There were a couple of people in the audience who kept shouting at him

that he wasn't giving enough information and that he wasn't really able

to help pwcs. He handled them very well. Where were they when I saw Dr.

speak? And speaking of Dr. , I don't know how he can say

his protocol is like Tietelbaum's, they are as different as can be. For

one thing, DR. T never mentioned CBT! Yea for him!

Dr. T gave all of us a sample packet (one dose) of his vitamin/mineral

drink mix. I tried ~1/8 of the full dose and thought it tasted awful! I

usually like vit/min drink mixes and I have 2 powders that I use on a

regular basis. Anyway, I couldn't sleep that night and was soon very

sick to my stomach. I was sick for days and became weak again. I had

just gotten my system back on track before that night and had finally

had a run of good days together. I looked at the ingredient list and

there are 900 mg of Malic Acid in one serving! Thankfully, I only took ~

1/8 of that! Here's what my cousin Hal Kristal says in his book, The

Nutrition Solution about metabolic types and mag:

" Magnesium was discovered to be acid forming to the Oxidative types. For

the Slow Oxidizer, who is overly alkaline, this would be desirable as it

would help to counteract their alkaline tendency by helping to acidify

the blood. But for the fast oxidizer, (Hello!) who is already too acid,

mag will tend to exacerbate their condition. Therefore, mag would be

desirable for the Slow Oxidizer but undesirable for the Fast Oxidizer. "

Yes, undesirable is an understatement. Yikes! Is more accurate. I will

always check that mag level before I take anything again. Should Dr. T

know this already and have two different packets for the different

metabolic types? Yes, he should. I couldn't ask him as I didn't know at

the time but I will e-mail him. He also had too much regular mag. And

the wrong type of vit. C for my type.

I'm wondering if different metabolic types explains the differences in

how pwcs handle antibiotics. Some pwcs feel great on them and others of

us can't take them at all. Penny says she does well with antibiotics and

she tested as a slow oxidizer. I can't handle them at all since I got

CFIDS and I'm a fast oxidizer. I wouldn't be surprised if there was a

link there.

Code:

PWC- person/people with Chronic fatigue immune dysfunction syndrome

sx- symptoms

dx- diagnoses

Anyway here are the notes from Tietelbaum's talk:

* Half of us had sudden onset with a flu or injury and know to the day

and hour when we got sick. Severe stress can cause it, pregnancy can and

that is usually a gradual onset, yeast overgrowth can cause it.

* Dr. T had sudden onset with a flu he considers himself recovered now

but admits he has to carefully watch his protocol and will have to the

rest of his life.

* Dr. Tietelbaum accepts no money from any drug, supplement or any other

company that would benefit by his protocol. He always tests with placebo

controlled groups.

* You need to be on his program (or any program) for 10 to 12 weeks

before you start exercising or you'll crash.

* The difference between CFIDS and FMS depends on what specialist you go

to.

* Treat your Candida (all pwcs have it) That means eliminate sugar from

your diet

* Chronic sinus infection is common and yeast overgrowth causes it.

(This was the first sx that went away after I was on the anti-Candida

diet.)

* Antibiotics are often used to treat infections, like sinus infections,

they cause yeast overgrowth which worsens the infection. The person

takes more antibiotics which causes more yeast overgrowth which causes

more infection and round and round and round we go.

* The term CFIDS was meant to be informational not clinical.

* CFIDS is a defense mechanism in your body that is reacting to stress.

He used the analogy of a fuse box, when you blow a fuse it's a good

thing or the house would burn down.

* CFIDS causes no permanent damage to the body. There's no damage to the

hypothalamus but it's down regulated.

* Hypothalamic dysfunction is the circuit breaker that clicks off.

* Your hypothalamus controls: hormones, sleep, body temp. blood

pressure. Most pwcs have NMH, one way to tell is to sit on chair where

your feet dangle, your legs will begin to ache badly if you have it.

* The hypothalamus keeps the body protected. When the fuse turns back

on, we look younger than we would have because all of our systems were

slowed down to protect us.

* If you want to turn your hypothalamus back on: get 8 to 9 hours of

sleep a night, treat your hormonal deficiencies, treat your infections,

treat your nutritional deficiencies.

* Thyroid tests are missing 1/2 the people with the deficiency. All you

need to test for thyroid is your free T4. Just because your thyroid test

says that your thyroid is normal, it doesn't mean it isn't low. The way

thyroid is measured would be like going into a shoe store and saying

" Give me anything from size 6 to 14 and any of them will fit. " Thyroid

meds have to be gotten through a pharmacy, not the health food store.

Sinthroid is often ineffective. Armor is better, it's a biothyroid (?)

Use thyroid meds with doctor's supervision as the meds can cause heart

attacks. 70% of pwcs have Hashimotos disease. Also, your thyroid can be

overactive and then would need to be treated differently. (I suspect I'm

in the latter group which is something Dr. never even addressed.)

* Hormone problems cause: disruption of day/night sleep cycle, low

growth hormone, low DHEA, low thyroid, low testosterone, low cortisol,

low estrogen, low oxytocin, thinning of eyebrows, dry skin and hair. One

must continually adjust hormones to get a right fit. If you're feeling

hyper, you're taking too much.

* DHEA: is an adrenal hormone, it can cause acne. Have your sulphate

levels checked every 2-4 months while taking it. Start with 10 mg. ( I

can only handle 2.5 mg. A day. That's the amount Dr. Rosenbaum put me on

and when I've tried taking 5 mg a day I broke out with a new kind of

acne. I had to special order my 5 mg of DHEA because most stores don't

sell it at such a low dose. I break it in half as my doctor suggested.)

People with Lupis often feel better on 200 mg. of DHEA!

* Adrenal Glands: Our adrenals go off with anxious stress and cause

exhaustion, low blood pressure, hypoglycemia (irritability and shakiness

relieved by eating). You can treat your adrenals with cortisol hormone

pills which is a drug or with licorice which is natural but can be hit

or miss. Panax Ginsing or raw adrenaline are natural remedies as well.

Dr. T has lists of remedies, both drugs and natural, for each deficiency

on his web site and in his book. Draw your cortisol before 9 AM but Dr.

T believes that blood tests are useless to test this. Each pwc has to be

treated individually depending on his/her sx. If your cortisol is too

high it causes depression. Also, some pwcs have overly high levels of

cortisol and have to be treated differently. (I've also heard doctors

say that these levels can all fluctuate depending on time of day and

month. When you're suddenly wide awake at 11:00 at night it could be

because your cortisol just shot up. This is very common in pwcs.)

* Low Estrogen: Blood tests are useless. Treatments for it are:

Estradiol (a drug), he recommends natural progesterone instead of

Provera for a natural treatment and don't take the Birth Control Pill.

* Low Testosterone: check a " free " (active) level. You want it to be at

the middle of the normal range. Only take natural products for this.

* Sleep: It's not our bladders waking us up, normals have to pee when

they wake up too. It's our sleep disorder, so don't drink less water to

treat this. For sleep use; Valerian root, Passionflower, Lemon balm,

Hops, Jamaican dogwood, or Wild lettuce, (all herbal remedies) Take 1 to

4 capsules before bed. (Herbal capsules always make me sick, but I do

great with teas and tinctures. Traditional Medicinals has passionflower

tea for sleep that I use and like.) Take any kind of calcium (Dr. T has

no opinion yet about Coral Cal) but don't take it in the morning if

you're on thyroid meds as it interferes with these. Take whatever you

need to to get to sleep; if you don't get 8 to 9 hours of sleep your

pain will not go away.

* Immune Dysfunction is caused by (and causes): bowel infections like

Candida and parasites which overgrow and thrive, sinus infections, UTIs,

Mycoplasma, Viruses (EBV,CMV,HHV6) etc... Garlic gets rid of parasites

Toxin binders like Questram can make you feel better in 2 weeks.

* Candida sx: post nasal drip, confusion, recurrent infections, bowel

problems. You MUST eliminate all sugar from your diet. For the best

tasting natural sugar substitute use Stevia. The liquid drops are the

best tasting and can be ordered at 1-800-4-STEVIA. It takes 6 to 12

weeks to treat yeast with a drug. (However, he didn't go into this, but

when yeast goes into organs like the brain I've read that it can take 6

years on the diet to eradicate it with the diet and drugs are way too

harsh to use for extended periods.) Nystatin, Diflucan and Spoinox can

be used but they also hurt the liver. If you use these be sure to take

lipolic acid to protect your liver. Natural remedies include: Caprylic

acid which can cause reflux, Garlic, Oregano Oil and he had Colostrum

with a question mark. (I want to add that the Candida they found in me,

Caqndida Krusei-not Albicans, tested resistant to Nystatin and Diflucan

and garlic but tested sensitive to Caprylic acid and Oregano Oil. I

think you should get tested at a lab like Doctor's Data that tests your

Candida and other bowel pathogens against natural remedies and drugs.

Also, Colostrum makes some people sick, it did me.) Dr. T said there is

no accurate test for Candida.

* Nutritional Deficiencies: This is the most important thing to treat.

Our American Diet causes a lot of malnutrition. The RDA for Bs is

inadequate. Check your B12 with a blood test, if it's under 520 get

shots. Check your iron and ignore the normal range. (Sorry, I didn't

write the range in my notes in a way I can understand now; my notes say;

" Ferritan<40 sat<22% " . It's Greek to me but maybe someone understands

this. The " < " sign means less than.) We can have 50 different

nutritional deficiencies so he sells a Daily Powder. (WARNING-CHECK YOUR

METABOLIC TYPE FIRST!) Vitamins and minerals can be bought through his

web site. Dr. T was asked about Coral Cal again. He polled the audience.

10 said they'd tried it. One said it helped. He recommends fish oil (I

found out I'm allergic to fish) He says Eskimo by Tyler has the best

fish oil, Nordic Naturals is good too. Do you have dry eyes and mouth?

Then you're deficient in EFAs, take fish oil, flax oil, and/or almond

oil etc... (only take the EFA oils). These oils are all good for your

heart and cholesterol. Amino acids are plentiful in flax seeds and they

raise glutathione.

* Dry Eyes: You can get prescription Testosterone cream from a doctor

and put it on your eyes.

* What to eat: increase salt and water, elliminate sugar, eat what makes

you feel good. (I had delayed reactions to ~10 of the foods I was

regularly eating. I never knew they were setting me off. I had immediate

reactions to 7 more foods.) Dr. T says that blood tests for allergies is

useless, (I agree, I had Serial Endpoint Titration done) He says he has

good testing for allergies but he didn't elaborate. He said the problem

we have isn't from too much acid, it's poor digestion.

* Pwcs are drinking 4 times as much water as normals but peeing 5 times

as much so keep drinking water because you're probably dehydrated. Does

your throat feel dry right now? Take a drink.

* Some pwcs never catch colds, other pwcs catch everything that comes

by.

* The average weight gain for CFIDS is 35 lbs.

* Brain fog is scary and our short-term memory is gone. It can be very

disconcerting when you get peoples' names wrong, like your spouse's! 1/3

of us have disorientation where suddenly they don't know where they are.

The difference between brain fog and senility: with brain fog you forget

where you put the keys, with senility you forget how to use the keys.

* Some pwcs need psychotherapy (not because CFIDS causes psch probs,

remember CFIDS is just for information, it's not clinical.) If you go to

a psychotherapist you should like him/her and feel better even though

it's a tough process to go through. Be picky!

* For All PWCS: No Blame

No Worry

No Fault

Drop the worry. Ask yourself " Am I in immanent danger? " usually you're

not. Be gentle with yourself. Do not make up for lost time when you feel

good. Do what feels good.

Believe that CFIDS/FMS are now treatable dds.

* Dr. Tietelbaum's Web site has a program that analyzes test results and

it's free if you're on Medicare (Medicaid?)

Dr. T will pay you back if you buy his vit/min powder and it doesn't

help. The END