• 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.

opinions please - shine protocol, fatigued to fabulous book

serenity

Senior Member
Messages
571
Location
Austin
went to a fibro "specailist" last week & was upset that all he was peddlin was the SHINE protocol & the book From Fatigued to Fabulous, which i have full access to so why would i pay him?
he wanted me to take DGL, ADR & LVR.
i asked for some test before just jumping into treatment & he ordered some, but i dunno - why didn't my GP (who i trust) order them?
i did not like the guy, & am not huge on alternative treatments anyway. i tried them for 10 years, refusing all drugs for a decade, with little results.
anyway, i also have a friend on me about this - on me about using herbals & acupuncture & stuff.
i've tried acupuncture, it made me worse not better.
(& another friend who's on about gluten free, & anther on about carb free, etc. etc blah blah)
can someone give some advice?
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
My first comment would be, if you don't like or trust a Dr. would be - STAY AWAY.

Secondly, while I not sure what tests were ordered but if he wanted to put you on a bunch of supplements you were correct in being cautious. I don't have anything against supplements, but as with most treatments I believe in adding one thing at a time and monitoring the result before changing anything else.

You'll find this is a pretty science-based bunch here when it comes to evaluating treatment and SHINE doesn't really hold up.

Dr. Teitelbaum, author of From Fatigued to Fantastic, became the Medical Director of the Fibromyalgia & Fatigue Centers. I don't think you'll find too many positive comments about the centers. I checked FFC out many years ago. At the time they were doing lots of expensive tests of questionable value and selling expensive supplements. Many people have reported that were thousands of dollars poorer and feeling the same or worse. I lost all respect for Dr. T. when he became director of the FFC (a few years ago) and his stock has only dropped. Apparently now the FFC wants to lock people into some kind of expensive treatment contract which I find very confounding.

I think he may have started off well intentioned and has definitly become a greedy self-promoter.

Here's a post in response to blog post made by Dr. T. recently:
http://www.forums.aboutmecfs.org/showthread.php?960

Best of luck,
Otis
 

serenity

Senior Member
Messages
571
Location
Austin
fantastic! i am so thrilled, i will read the info.
i know for sure i won't see the doc again, my gut (leaky or not) tells me when i'm dealin with a snake oil (or fish oil) salesman.
thanks guys! i LOVE that you are scientific minded bunch as i am as well & i never know what to say to the dang hippies - haha!
(no offense to hippies, i am one myself) :)
 

Sunday

Senior Member
Messages
733
In this case you may find that scientific-minded means taking a scientific look at all that acupuncture and herbs and stuff - because there is no medical cure for what we've got.:Retro smile:
 

serenity

Senior Member
Messages
571
Location
Austin
oh goodness, thank you Otis! i read that before but had not put 2 & 2 together. i read so much that i dismiss & can't always recall who said what - but i knew SHINE & Fatigued to Fab were red flags... there were many other things about the appt too detailed to get into (one example was asking how much the vitamins cost & being told he didn't know - to ask the girl up front), let's just say every time i asked a legitimate question i got the run around. i was pushed to answer right away if i planned to follow his regimine & told him i had not come prepared to answer that today...
finally i was pushed to say "i don't much believe vitamins cure this, i believe XMRV will pan out to be the culprit" & i was told that his 20 years of experience said that i was wrong.
cough cough
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
hi, i think the principles in the book of fatigue to fantastic is quite good, but you have to look past the hype/salesman type stuff with the supplements, he makes it sound like the supplements will cure you, i think supplements help but not to the degree he makes out and supplements he recommends u could find cheaper else where. The book should be called 'from fatigue to more functional', i say use these principles but work with your own doctor, give him a copy and explain to him about the hype, but the principles are sound. Have to remember that most of the treatments for cfs are about treating symptoms, making it more bareble and trying to increase your function.

Cheers, good luck!!!
 

serenity

Senior Member
Messages
571
Location
Austin
thaks Heaps, i bet my doc won't be interested - he's so practical, havin been in the biz for so long & seen it all ... hard to explain but he's a good old country doc (best in my little town) & he's just very down to earth. he basically says i'm doin fine & not to try to "reinvent the wheel". i know what he means & i agree, i'm doing pretty well & barring some miracle dont' expect to do much better & i need to be realistic about that & accept it. he has seen so much worse, so... anyway. i mean i can ask him about all the stuff my friends & other docs & relatives push, but there is only so much time per appt. & i need to deal with my issues first, so - as you can imagine, asking about every protocol cure or whatever out there... it adds up. i pretty much know his stance. he has no problem with my trying anything i like, but in the end - i always end up back with him.
:)