Has anyone seen Dr Tietelbaum?

[Guest guest]

That is outrageous. You can, by the way, go see Cheney for $540 an

hour and I think Cheney has a better grasp of the illness than

Teitelbaum. I am going back to see him myself in June. Or see a

physician who does the Teitelbaum method, there are links on

Teitelbaum's website to these doctors that tell where they are state

by state. I think it's endfatiguenow.com or .org, can't remember, a

google search will turn it up.

Helen

> Just wondered, I called and the price is $5800 for the first 4 hour

visit. Not including any blood work. That is crazy. Anyone here

ever see him?

>

> Thanks,

> Suz

>

>

[Guest guest]

Just wondered, I called and the price is $5800 for the first 4 hour visit. Not

including any blood work. That is crazy. Anyone here ever see him?

Thanks,

Suz

[Guest guest]

Or you could go see my doctor if you are in the San Diego area. He

has gotten me to about 95% remission. For the price of seeing

Teitlbaum you could buy plane tickets to San Diego, got to

Disneyland, Sea World and have a great vacation. See my doc, have a

lot of blood work, get needed meds and he even takes insurance.

He'll even spend about 1 1/2 hr with you and draw your blood his

self so that there are no mistakes. He's been my doc for about 11

years.

MExperimental , " helen9jora " <helen9jora@y...> wrote:

>

> That is outrageous. You can, by the way, go see Cheney for $540 an

> hour and I think Cheney has a better grasp of the illness than

> Teitelbaum. I am going back to see him myself in June. Or see a

> physician who does the Teitelbaum method, there are links on

> Teitelbaum's website to these doctors that tell where they are

state

> by state. I think it's endfatiguenow.com or .org, can't remember,

a

> google search will turn it up.

>

> Helen

>

>

>

> > Just wondered, I called and the price is $5800 for the first 4

hour

> visit. Not including any blood work. That is crazy. Anyone here

> ever see him?

> >

> > Thanks,

> > Suz

> >

> >

[Guest guest]

Hi Jelly,

95% remission -- that's pretty damn good. Do you mean you're

done with treatment, or are you taking meds (or hormones,

supplements, etc.) to manage your symptoms? I know that

we're all different and what worked for you may not be right for

others, but I'm sure we're all curious to know what the protocol

was / is -- and also, what the name of your doctor is?

As for me, as much as I'd love to go to DisneyLand, I know that

right now there is no way I could even stand in line for more than

10-15 minutes, let alone go on any rides! But I totally understand

your point...

Thanks

Dan

> > > Just wondered, I called and the price is $5800 for the first 4

> hour

> > visit. Not including any blood work. That is crazy. Anyone

here

> > ever see him?

> > >

> > > Thanks,

> > > Suz

> > >

> > >

[Guest guest]

Hi Dan

I don't think I'll ever be clear of treatment. For the most part I

am down to 10 mgs. of Elavil for sleep and I still take 5 mgs. of

Norvasc, which I continue to take kind of as a security blanket. I

have had ventricular tachycardia which can be seriously life

threatening and can be associated with conjestive heart failure.

They couldn't find anything obviously wrong with my heart and

thought maybe it was related to vascular spasms around my heart. I

have been on Norvasc for about 7 years for Raynauds(vascular spasms)

so I'm kind of afraid to let go of that. Other then that, I take

nothing else usually. Ocassionally Advil or Tylenol which actually

work now for the first time.

It has been about a year since I took ABX and I have just recently

started a round again. I am only taking 5 mgs. of Doxy along with

NattoK to keep my blood thin and I am herxing. I know the bugs will

always be there so I try and hit them whenever I have a little free

time to endure a herx. The herx is not unbearable, but it's really

hard to bring the discomfort on when I feel so good otherwise.

I had posted my story for some others on another website, here is a

copy. If you are interested in my doctor, email me. Several have

already emailed me since I posted that message.

I know what you mean about Disneyland. I have pictures of me at

Disneyland when my kids were little, I looked so bad, so, so tired.

My story: I have been sick for 24 years, since I was 24, now you

know how old I am. I was very sick with nueroligical problems, heart

problems in the form of ventricular tacycardia for no apparent

reason. Hypercoagulation, I didn't bruise, I didn't bleed.

Congnitive impairment enough to scare myself at times, when not

being able to dial phone #s or find my way home, not knowing where I

was. Pain daily about 9 or 10 on the richter scale, migraines daily,

nausea, consuming fatigue. I didn't sweat, I was anorexic thin, my

eyes are oddly messed up, tinnitis, my hair was falling out, my skin

was gray in color. Chronic yeast. People were in fear for my life.

There's more, but I think you get the jest of it.

The first thing that bought me time, was Elavil that I started 14

years ago. I don't know why but it works REALLY good for me. It

works for my mom and my daughter too. I was put on 75 mgs which is

alot, but it was what I needed then. I tried to cut back after a

couple of years with no success. My doc then suggested adding

Flexeril. With the Flexeril, I was able to cut back to 25 mgs of

Elavil eventually. Even though I was feeling so much better,

probably 75%, I could tell whatever was wrong with me was still

progressing. My extremeties were

turning icey cold and paler and paler, until I looked like a walking

corps. The Raynaud's was getting worse and worse and I was having

numerous episodes a day, even in the heat of summer. I was put on

Norvasc to help the spasming in my viens. My heart rate was us to

120 bpm even at rest so I knew I had to keep looking for answers.

Really started working with my doctor whole heartedly and really

listening to what he was saying. He had told me some time earlier

about Mycoplasma and even though I knew that a Myco infection had

been at the start of the problems I remember, it didn't really hit

home. Besides, the tests were so expensive.

Finally though I decided to get tested and I came back negative. He

explained why it might have been, but I wasn't ready to dish out any

more cash right then to try again.

Probably a year later, he told me about a test for hypercoagulation

that might explain what looked like my very poor circulation. I was

tested and came back definetly positive. I was started on a nasal

heparin spray immediately.

I stayed on the heparin for about a year, seeing major improvements

in my skin color and tempurature immediately. The color of my urine

at first was oddly green and I had a lot of breakouts on my legs.

Over the weeks my skin took on a more moist appearance and that

continued over the weeks and months to come. I had a little bit more

mental clarity, but not enough in my mind. My blood for the first

time started looking normal instead of like brown sludge. I was so

excieted when I go my first whopping bruise on my leg from a klutz

moment I had.

After the first year we tried to take me off the heparin and the

hypercoagualtion came immediately back. My doc explained that I

likely had an infection and my body was still not able to handle it

on it's own even with the fibrin removed by the heparin. He asked my

to be tested for the Mycos again, this time I would go to the lab in

Beverly Hills which was an hour away. Bingo, I came back positive

for the the 2 Mycos, one being the Fermentans.

I was started on Doxycycline at 200mgs. a day. Nothing happened at

first, then on day 8 I woke up feeling extremely weak. My heart was

pounding away at 145 and my BP was not picking up on my home cuff. I

could barely stand up. My cardiologist recommended I get to the

hospital immediately and to call and ambulance if no one could take

me now. At the hospital they could find really no apparent reason

for the problems, my potassium was a tiny bit low, but everything

else looked ok. They found my BP fascinating though, had me standing

up and lieing down, watching my bp doing the opposite of what they

should see it do. I suppose they were doing a tilt table test

without knowing it and not recognizing what the results were.

I was sent home and had begun feeling a bit better the next day. I

had instinctively stopped taking the ABX not making a connection

though. I started doing some research and found that I had herxed

BIG time and thankfully I ran into the Road Back Ffoundation where I

learned about pulsing ABX.

A week later I tried again and again felt terribly weak, but not

like the time before. I was now taking 50 mgs a day, every other

day. After about a week though, my ankles and feet started swelling

and were red and feverish. I contiuned for another week or so, and

it was just getting worse. Stopped the ABX, waited awhile and tried

again, same thing. So I took a break from the ABX all together for a

bit.

I had been reading about Minocycline, that it was better absorbed

and there seemed to be less reactions. We decided to give that a

try. I started at 25 mgs every other day. I again had some swelling

in my feet, but not unbearable. It reminded of what my dad's Lupus

feet looked like. I did herx significantly, but it wasn't something

that I couldn't push through. I continued for probably 2 months

straight while still using the heparin all along.

My life took a turn and got seriously complicated when my daughter,

3 1/2 months pregnant was put on bed rest and gave birth to her

second daughter 3 full months premature. She weighed 1lb, 15oz and

was 13 inches long. From the time I started taking care of my

daughter and first granddaughter I had to stop the ABX, because I

just douldn't do what I had to do and herx at the same time. As long

as the ordeal was, I managed to hold up pretty well during the 3

month stay that my little granddaughter endured in the hospital. We

finally got her home about the end of Janaury last year, but not

before my dad passed away 2 weeks earlier. I tried to start the ABX

again but life wasn't done kicking us around and I just couldn't do

it. I was really feeling good though with my heart rate down to

about 95. I would say I was at about 85% normal at this time.

Then around April someone had encouraged me to look into the MP as

it might make the herxing less difficult. I read up on it and I am

always game, so gave it a try. I failed miserably although I will

say I did not stay out of the sun like I was supposed to, I can't be

a cave dweller although I am far from a sun worshiper either.

I was incredibly weak and not able to function which was not an

option since we were now moving out of state. I stopped the MP and

that is about the time I took the yeast med. Well, I'm not sure what

made the difference, the short couple weeks on the MP or the yeast

med. But my intestines started working for the first time since I

was a child. My heart rate slowed another 10 and I was slowly able

to cut back on the heparin, to the point I was taking none and then

started the NattoK. I was able to stop the Flexeril and I am now

down to 10mgs. of Elavil and am about to drop to 5.

Have not been on ABX since my try with the MP I don't think. I feel

great, I hike, take walks, spend time out in the sun. I don't take

naps ever anymore and can stay awake until 10:30 or 11:00 at night

easy. ALL of my symtoms are gone except for the dang ringing in my

ears and my apparent dry eyes.

-- In , " kdrbrill " <kdrbrill@y...>

wrote:

>

> Hi Jelly,

>

> 95% remission -- that's pretty damn good. Do you mean you're

> done with treatment, or are you taking meds (or hormones,

> supplements, etc.) to manage your symptoms? I know that

> we're all different and what worked for you may not be right for

> others, but I'm sure we're all curious to know what the protocol

> was / is -- and also, what the name of your doctor is?

>

> As for me, as much as I'd love to go to DisneyLand, I know that

> right now there is no way I could even stand in line for more than

> 10-15 minutes, let alone go on any rides! But I totally

understand

> your point...

>

> Thanks

>

> Dan

>

>

> > > > Just wondered, I called and the price is $5800 for the first

4

> > hour

> > > visit. Not including any blood work. That is crazy. Anyone

> here

> > > ever see him?

> > > >

> > > > Thanks,

> > > > Suz

> > > >

> > > >

[Guest guest]

Sad, but ultimately fascinating and UPLIFTING story Jelly.

thanks for posting it.

I've heard so many other try SO many things, only to be helped

after starting some sort of antifungal therapy as you did. Some

do a combo or triple therapy (i.e. the Cranston protocol), and

have to stay on it for 3-4-5 months, along with some dietary

rotations, but then end up being able to completely stop all other

drugs and even begin to eat some of the foods that they used to

have problems with. Congratulations on your success so far!

d.

Somewhere I have a chart that shows that fungal infection

symptoms are identical to symptoms of CFIDS and fibromyalgia.

Identical.

> > > > > Just wondered, I called and the price is $5800 for the

first

> 4

> > > hour

> > > > visit. Not including any blood work. That is crazy. Anyone

> > here

> > > > ever see him?

> > > > >

> > > > > Thanks,

> > > > > Suz

> > > > >

> > > > >

[Guest guest]

$5800 for an intial visit? I'm sorry, but my opinion of Tietelbaum

has just gone waaay down. That's inexecusable and

unjustifiable, especially considering, as you say, that so many of

us can barely afford to get by each month.

Cheney charges $540, and Tietelbaum $5800? For one to

charge over TEN times the amount of the other -- jeez, that's

more than unjustifiable, it's shameful.

d.

> > Just wondered, I called and the price is $5800 for the first 4

hour

> visit. Not including any blood work. That is crazy. Anyone here

ever

> see him?

> >

> > Thanks,

> > Suz

> >

> >

[Guest guest]

The less talented doctors who cannot invent some suitable etiological

concept to gain them notoriety simply become " CFS doctors " be

asserting their " belief " - increase their fees, and yet offer nothing

more than the same old vitamins, supplements and useless therapies

that didn't work twenty years ago.... and still don't.

When pressed, these " CFS doctors " can be made to admit that they have

a conceptual grasp that is based on " fatigue " or " inherent weakness of

the individual " which calls for no special research into the strange

manner in which this illness progressed through the population.

Failure of CFSers to correct this " blame the patient " philosophy means

that these doctors will have a very rewarding career selling vitamins

and never add their voices to the call for research.

-

[Guest guest]

IMO, other idiopathic diseases like sarcoidosis and Crohns, which I

think probably have alot in common with CFS, are not exactly being

blasted to bits by modern science, even tho they seem to be researched

much more energetically than CFS. In the 80s and 90s the

Wirostko- group did some very meritorious work on occult

infection in eye inflammation occuring in those diseases (Crohns is

usually cited as having extra-gut inflammatory manifestations in ~30%

of cases, and sarcoidosis is very often multi-systemic).

They made many electron micrographs, published many an article, passed

the bacteria to mice and imaged them in the mice, achieved partial

recovery in the greatly-sickened mice using antibiotics. Their

findings were very similar in all or almost all examined cases of

uveitis whether or not associated with systemic disease. They

demonstrated very signifigant improvement in human patients using

long-term rifampicin. Similar bacteriomorphic bodies were imaged in

another inflammatory eye disease by an idependant investigator, and

images published. Today, 10 years later, uveitis is considered an

idiopathic inflammation as it was before.

A later pilot study by et al found the same bacteria in

sarcoidosis lungs. I have never seen it cited anywhere. There has been

little work of this kind since.

All this work was published in mainstream journals and was greeted by

a few lukewarm-to-snipey letters and editorials, which had maybe 1 or

2 good points, but look like what they basically did was shoot down

the work. One such response refered to " experiments claimed to be

carried out in mice " , a bald allusion to fabrication the like of which

one rarely sees in this sort of discourse.

IMO, those who want to understand these mystery diseases should try a

transmission electron microscope, amongst other things. Those who want

to advance therapy might try, amongst other things, finding out why

Chlamydia pneumoniae is invulnerable to antibiotics when inside

leucocytes, a total mystery:

http://circ.ahajournals.org/cgi/content/full/103/3/351

http://aac.asm.org/cgi/content/full/47/6/1972

These angles easily deserve 10-50 times more attention.

<erikj6@e...> wrote:

>

> The less talented doctors who cannot invent some suitable etiological

> concept to gain them notoriety simply become " CFS doctors " be

> asserting their " belief " - increase their fees, and yet offer nothing

> more than the same old vitamins, supplements and useless therapies

> that didn't work twenty years ago.... and still don't.

>

> When pressed, these " CFS doctors " can be made to admit that they have

> a conceptual grasp that is based on " fatigue " or " inherent weakness of

> the individual " which calls for no special research into the strange

> manner in which this illness progressed through the population.

>

> Failure of CFSers to correct this " blame the patient " philosophy means

> that these doctors will have a very rewarding career selling vitamins

> and never add their voices to the call for research.

> -