• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Dr Teitelbaum & LDN

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
D ribose is VERY helpful for me. He talked about it long ago. He brought a lot of things up that doctors are now beginning to talk about.

I can't speak for all brands of Dribose but I love the powder I take. I just ordered two more big bottles yesterday. I make sure to have plenty of backup for my supplements.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Moonchild - Dr Myhill is nothing like Teitlebaum - she is a well respected doctor who has nothing but her patients interests at heart, a truly lovely inspiring person.
 
Messages
75
Location
Australia
sallysblooms, quite a few people have been telling me that ribose has helped their pain and energy. have just ordered some from the US - cheaper than buying it here as far as i can tell - and started taking it. the brand i ordered seems to be the one that keeps coming up (and is the one teitelbaum mentioned too). would be interested to know about other people's experiences with different brands too though.

maryb, thanks for that. i've just been to see a dr here who used to work with dr. myhill and follows her protocol (sorry if i've said all this before here...serious case of brainfog) the thing that probably concerned me the most was that she hadn't heard of XMRV before. have also been wondering how compatible it would be with being vegetarian...
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
Hi Marlene - welcome!

There's a very long thread on LDN elsewhere on this board. Some have had some success with it, but many find it doesn't help or makes things worse.

Jenny
 

Kathi

Senior Member
Messages
104
Location
Pittsburgh,PA
Dr. Teitelbaum's Fibro and Fatigue Center put me in congestive heart failure because they gave me too much T3 thryoid medication without slowly ramping it up. I had a major heart attack as the result of being seen by a doctor on PA licensing probation for passing himself off as a board certified ER doctor. This doctor told me I wasn't sick and totally had no clue about how sick I actually was.( By the way I had no heart issues prior to being seen there and was not on any heart medications) All Dr. Teitelbaum was concerned about was whether I was going to sue and begged me not to do anything because so many people would be without proper health care. I stupidly listened.Dr. Teitelbaum offered to work with my PCP and furthered my health decline. I was forced to go elsewhere. Instead of recovering, because I have recovered from this illness before, I am on social security and disabled. Did they monetarily compensate me for what they did to me. NO .................................
 

Cort

Phoenix Rising Founder
Honestly when I look at SHINE and the Fibro-Fatigue Center protocols they look pretty much like Dr. Myhills and most other alternative health practitioners - they look at pathogens, hormones, heavy metals, oxidative stress - if that's not enlightened medicine, I don't know what is; if those things don't work then it's because those are the wrong protocols for CFS - which is apparently so for many people. I know of people they've worked for and for people for whom they don't work; ditto with every single treatment on this board. Yes, they are expensive but then again all that stuff really IS expensive.

I think the problem with Teitelbaum is that he promises too much - leading to upset when he doesn't come through.

Whether the FF practitioners are any good is another story; it takes years to get to know ME/CFS and even then many aren't effective. They were apparently started by a Fibro patient who improved greatly. Just look at the Introduce yourself stories on the Forums - they are all over the place - there are subsets in subsets; its incredible how diverse ME/CFS is - no wonder its so difficult to treat. Even Cheney admits he's not all that great at treating it.

The problem is that there aren't enough good treatments for CFS and he is over stating his success.
 

andreamarie

Senior Member
Messages
195
The FF center in the Boston area closed within a yr. I have not been able to find anyone who went; it was in Waltham MA. It seemed strange that it disappeared so quickly.
 

Kathi

Senior Member
Messages
104
Location
Pittsburgh,PA
Cort, I was not tested for the things that you mentioned at the Fibro and Fatigue Center. I had been following protocol for a year before going to the F&F Center and Dr. Pierotti thought I was a hormone only patient. Suffice it to say I have been officially diagnosed as having CFS and WAS NOT a hormone only patient. I WAS MISDIANGOSED by the very people that claim they know about CFS and put in congestive heart failure. Their lack of understanding and failure to identify my illness was the problem.
A slacker/liar/malingerer is not in my vocabulary, nor have I ever been any of those things. When I came in and said I had CFS, I meant I had CFS, not a hormone imbalance.