Dr Teitelbaum & LDN

[Diva55]

I read on another support board that Dr Teitelbaum will be discussing LDN soon.

Now I'm not a fan of Teitelbaum as he dismissed XMRV as another virus and also he just pushes his supplement "protocols" so much. Now he seems to be about to jump on the LDN bandwagon.
I suppose it could be good thing for promoting LDN as he is well known and is involved with Fibromyalgia & Fatigue Clinics in the US.

"In our upcoming newsletters, we will be discussing a number of promising treatments for CFS/Fibromyalgia, chronic pain, and a number of other health issues. These include:

1. Low Dose Naltrexone

This old, safe and cheap medication has been found to have dramatic immune modulating effects, but only at super low doses. A recent case series by Dr. Sultana Mustafa that used this treatment at the Detroit Fibromyalgia and Fatigue Center confirmed a recent Stanford study showing it to be VERY helpful."

 

[gracenote]

Here's what I found on the Stanford study. It was a very small pilot study. I couldn't find anything about the Mustafa study (perhaps it has not been published).

Reported April 23, 2009

Drug May Relieve Fibromyalgia Pain

(Ivanhoe Newswire) -- An inexpensive drug that has been used for years to treat opioid addiction may be the key to relieving pain for millions of fibromyalgia sufferers.

Fibromyalgia is a disorder that affects an estimated 4 percent of the population, yet there is no well-established and objective blood test to confirm its diagnosis. Sufferers report experiencing chronic widespread pain, debilitating fatigue, sleep disturbance and joint disorders.

A small pilot study at Stanford University tested the effect of a low dose of the drug naltrexone on 10 women with fibromyalgia. Over a 14-week period, the women used a handheld electronic device to report their symptoms on a daily basis. They took a placebo for two weeks and the drug for eight weeks, but they were not told when they were taking the drug or the placebo.

The drug reduced symptoms of pain and fatigue an average of 30 percent over the placebo, researchers said.

"Patients' reactions were really quite profound," senior author Sean Mackey, M.D., Ph.D., an associate professor of anesthesia and chief of the pain management division at Stanford University Medical Center, was quoted as saying. "Some people decided to come off other medications. Some people went back to work really improving their quality of life."

Researchers said the drug is so promising because currently there are few treatment options available for fibromyalgia patients, it costs about $40 a month and it causes limited side effects. A larger, longer-term trial is planned to confirm the results of this preliminary study.

Source: Pain Medicine, April 2009

http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=21300

 

[JT1024]

Check out the last posts on this thread... There was a conference in Glasgow, Scotland today and results of a new LDN study were announced.

http://www.forums.aboutmecfs.org/showthread.php?379-Low-dose-Naltrexone

 

[moonchild]

just been reading some of teitelbaum (in a round-about way while trying to find out more about things in the myhill protocol)...and at the same time also trying to find out more about LDN - will look up the link above thanks. i have a vague memory of reading some more positive XMRV comments from teitelbaum a few months ago? what would you make of a dr. who specialises in CFS and hadn't heard of XMRV yet?

 

[garcia]

just been reading some of teitelbaum (in a round-about way while trying to find out more about things in the myhill protocol)...and at the same time also trying to find out more about LDN - will look up the link above thanks. i have a vague memory of reading some more positive XMRV comments from teitelbaum a few months ago? what would you make of a dr. who specialises in CFS and hadn't heard of XMRV yet?

Teitelbaum doesn't treat CFS though, he treats "Chronic Fatigue", whatever that is. I would avoid him like the plague. He is bad news for us. Constantly jumping on bandwagons, then jumping off when it suits his business strategy.

 

[moonchild]

i've read that about teitelbaum (possibly here?) before, but from what i've come across so far in his work i don't get that impression really. and many of his ideas for treatment seem to be similar to myhills and revolve around mitochondrial function...

 

[dipic]

i've read that about teitelbaum (possibly here?) before, but from what i've come across so far in his work i don't get that impression really. and many of his ideas for treatment seem to be similar to myhills and revolve around mitochondrial function...

[video=youtube;yckmMir-BXU]http://www.youtube.com/watch?v=yckmMir-BXU[/video]

I'll let this video speak for itself. Teiteldumb isn't concerned with treating people with ME/CFS so much as making as much money as he possibly can off anyone experiencing "chronic fatigue" or even as this video exemplifies, simply fatigue.

For further enlightenment about this little annoying tick on the ME/CFS community's back, I suggest you take a look through this thread: http://www.forums.aboutmecfs.org/showthread.php?6466-Dr.-T-on-the-recent-controversy

 

[moonchild]

ironically my eyes/head/concentration simply aren't up to watching the video at the moment (slow computer doesn't help - you get it all in snatches and then have to wait while it loads another little bit). the link you provided was enlightening...what i've been basing my opinion on so far is things like these quotes from his book:

' Others have fatigue so disabling that they cannot even get out of bed, let alone participate in regular daily activities.' (p 7, 3rd edition), and
' Dr. Teitelbaum does not accept money from any pharmaceutical or natural products whose companies he recommends. He has directed that all his royalties for products he makes be donated to charity.' ( p 282, 3rd edition)

that said, others obviously have had much more exposure to his views than i have.

 

[moonchild]

PS

oh, and i did wonder about his 'cure' ( i think was the word?) rates...of all the people i've known and heard of with severe CFIDS i've haven't yet found one who has sustained a significant improvement that seems attributable to anything other than time, let alone a 'cure' (we wish!).

 

[pine108kell]

My opinion of Dr. T. has evolved, in a negative way, over time. His intermingling of people with "fatigue" and CFS is a huge disservice. His SHINE program is a cruel joke, suggesting that this is actually a highly effective program for people with a severe debilitating illness.

I am skeptical that XMRV is the "cause" of CFS either, but Dr. T suggested it doesn't really matter because the SHINE program is already an effective treatment. Maybe his "simple" program works for people with "fatigue", but he is now an ambassador for minimizing our illness. He takes us backwards when we need to keep looking more closely at the real root problems and new treatments.

As for LDN, I have no idea. I would try it if it was affordable and I had a dr. to help me, but I am not paying thousands to see Dr. T.

 

[Sallysblooms]

Well, he is not the best for sure but at least he did raise the profile of CFS. Also, some of his ideas like DRibose and a few things are very good. Dribose is very helpful along with other things like amino acids, CoQ10, carnetine... At LEAST he isn't like 99% of the doctors they are clueless... DUH....Many don't get it, don't believe CFS is real etc. He is better than they are.

Thankfully, there are wonderful integrative MD's and nutritionists that DO understand it all and are knowledgable about supplements! FINALLY.

 

[dipic]

At LEAST he isn't like 99% of the doctors they are clueless... DUH....

I disagree, at least with the sentiment that he is better than doctors who are simply un-or-misinformed. The fact that he is extremely knowledgeable about the illness yet willfully muddies the definition of CFS when talking about it (referring to it as "chronic fatigue" or sometimes just "fatigue") so he can capitalize on anyone who is experiencing any sort of idiopathic fatigue is simply disgusting.

He clearly cares more about self promotion, pimping his protocol which he claims has a "91% success rate" in improving or recovering people (I think we all know that number is total bullshit) and maximizing his profits from said protocol and supplements than informing people about the serious neuro-immune disease known as ME/CFS. By being a spokesperson "for" us (by going on the Dr.Oz show, Today show, speaking at lectures, etc.) he is doing us a HUGE disservice.

Also, Dr.T is hardly the only one who has figured out what supplements "work" for ME/CFS patients (as you acknowledged yourself.)

And how about those amazing supplements? Those have cured a ton of people with this terrible neruo-immune disease and/or XMRV, huh? Oh yeah, and forget about XMRV. According to Dr.T (at least as of Nov. 3 2009 when he spoke to Psychology Today) XMRV is simply just another virus (or his exact words: "is in essence but one more documented infection") in CFS patients.

The guy is a shameless, greedy tool and I shall say nothing more on the matter as it, if you hadn't notice, quite angers me.

(also, please note that my anger is not directed toward you, Sally, although I may have come off too sarcastic and sincerely apologize if I seemed rude... this guy just makes my blood boil and find it oft frustrating that there are still people within the ME/CFS community that support him)

 

[Sallysblooms]

Wow.

My CFS goes WAY back and I saw heartless MD's that told me there was NOTHING that could be done even if CFS DID exist. They didn't even know what blood tests to give. I just never gave up. As time went by I found Integrative docs, and one nutritionist that had a doctorate in CFS. He helped more than doctors. Dr. Teitlebaum had helpful advice when most docs had nothing and didn't want to learn anything. Things are finally getting better, but for a long time, Dr. Weil and Teitlebaum were the only ones in the spotlight with advice to help with supplements and that was great to at least support the health of the body. I am happy that there are good integrative doctors now. I needed them 18 years ago, but better late than never.

 

[Recovery Soon]

Here's my analogy for Teitelbaum:

He targets abandoned children (cfs patients), offers them the compassion/love they are missing from their parents (the medical community) and then RAPES THEM.

Then he goes on television and purposefully distorts it as Chronic Fatigue, which further disenfranchises us from the medical community, in order to sell fatigue related products to the non CFS masses (thereby cheating on us).

Afterwards he placates us with stories about how the medical community has forsaken us. "I don't know why Mommy and Daddy hate you so much. You're not crazy, you crazy critter. Come over here and give Uncle T a squeeze. Uncle T loves you, baby!"

And then when called on it he offers a classic abusers apology "I'm sorry but all my talk about Chronic Fatigue Syndrome was edited out. It's not my fault. You must be irritable cause you're so sick and temperamental, baby. Come give Uncle T another hug."

It's time to go Uncle T, you've overstepped your welcome, and our backsides can't handle any more of your cures.


HE CONSISTENTLY DIMINISHES THE SERIOUSNESS OF CFS EVERY SINGLE TIME HE IS IN THE MEDIA BY FALSELY CLAIMING THAT IT IS "EASILY TREATABLE"

I went to F&F clinics- my doctor left because, in his words "I can't emotionally handle watching people not get better."

 

[onebush]

I totally agree. I saw him in 96 and he has raised the price bar way too high and it was bad then. He is about selling products. He has such a campaign going it is unreal, key in CFS/FM and he will be there.
I am not sure if this is true seems like it would be against the law..he is having patients sign contracts to do his entire protocol. IV's and all. It was a huge mistake to go to him even then and costly. He charged $1500. to read my test results and tell me what he thought I should take. He was not formulating his own products then. He had some things in his office and told me where to get the rest. He claims all profit goes to charity...what a nice write off for all his other business failures.. I think a few of his clinics have closed.

 

[Sallysblooms]

I have not seen him, I just know most docs years ago were not helpful at all. A doctor talked about here is not a great one either, at least for me. Guess we are all different.

I am sure some people have been helped with his advice. I am not a fan, I just know he knew things other docs didn't and it was very helpful.

 

[Sunday]

From what I have seen on this thread, I would not advise going to Teitelbaum.

I do think he says some useful stuff, but it's all mixed up as those above have said: he conflates CFS with adrenal and other kinds of fatigue, and, more importantly, he promises a cure he can't offer to people who REALLY have CFS. If you search "Teitelbaum" on this forum, you will come across people with personal experience of his centers. I have read a few who said they spent thousands to no effect, and were stonewalled when they asked where the promised improvement was. I have read a couple who mentioned the head of his New England center who quit, because he couldn't stand working with so many people who never got well.

And I read one account of a woman who had a massive heart attack because one of his FFCs insisted she had low thyroid and gave her such a high dose of thyroid meds that it blew her heart out. She was stonewalled, too.

The fact that some of Teitelbaum's suggestions might be helpful needs to be balanced with the fact that many of his suggestions might be harmful, or even deadly. There's a reason people are leery of him.

 

[*GG*]

My opinion of Dr. T. has evolved, in a negative way, over time. His intermingling of people with "fatigue" and CFS is a huge disservice. His SHINE program is a cruel joke, suggesting that this is actually a highly effective program for people with a severe debilitating illness.

As for LDN, I have no idea. I would try it if it was affordable and I had a dr. to help me, but I am not paying thousands to see Dr. T.

LDN is affordable, if you don't have a Dr, you can get it on the internet, there are Yahoo groups for this. FYI

 

[*GG*]

I disagree, at least with the sentiment that he is better than doctors who are simply un-or-misinformed. The fact that he is extremely knowledgeable about the illness yet willfully muddies the definition of CFS when talking about it (referring to it as "chronic fatigue" or sometimes just "fatigue") so he can capitalize on anyone who is experiencing any sort of idiopathic fatigue is simply disgusting.

He clearly cares more about self promotion, pimping his protocol which he claims has a "91% success rate" in improving or recovering people (I think we all know that number is total bullshit) and maximizing his profits from said protocol and supplements than informing people about the serious neuro-immune disease known as ME/CFS. By being a spokesperson "for" us (by going on the Dr.Oz show, Today show, speaking at lectures, etc.) he is doing us a HUGE disservice.

Also, Dr.T is hardly the only one who has figured out what supplements "work" for ME/CFS patients (as you acknowledged yourself.)

And how about those amazing supplements? Those have cured a ton of people with this terrible neruo-immune disease and/or XMRV, huh? Oh yeah, and forget about XMRV. According to Dr.T (at least as of Nov. 3 2009 when he spoke to Psychology Today) XMRV is simply just another virus (or his exact words: "is in essence but one more documented infection") in CFS patients.

The guy is a shameless, greedy tool and I shall say nothing more on the matter as it, if you hadn't notice, quite angers me.

(also, please note that my anger is not directed toward you, Sally, although I may have come off too sarcastic and sincerely apologize if I seemed rude... this guy just makes my blood boil and find it oft frustrating that there are still people within the ME/CFS community that support him)

Well written Dipic, I agree with what you have said here, hope you are improving!

 

[moonchild]

really interested to see all these opinions...definitely take on board all the comments, i'm sure people in the same country as him know much much more by word of mouth over the years etc. and also the ribose reference had my ears pricking up - just started taking some as it seemed to keep being mentioned in various places and is one of the few things i hadn't tried before. any similarly strong opinions on myhill???