Discussion in 'Fibromyalgia Main Forum' started by suexi, Aug 28, 2006.
Hi everyone; has anyone tried his protocol...if so what were the results?
I haven't personally tried his approach, however if you run a search for Dr. Teitlebaum you'll find a lot of information from other posts.
I go to a regular MD who trained in the Teitelbaum protocol and I am getting great results.
I'm only 4-5 months into it, so have a ways to go, but am less fatigued, and have less muscles soreness. The fibrofog is pretty much gone.
I highly recommend it.
not too long ago about going to Dr. T. Said he charges a small fortune.
Susan, I have not tried his protocol, but my doctor suggested that I make an appointment to see him. I just read Lamotta's post here about how much Dr. Teitlebaum charges. WHOA!!!
Lamotta, if you read this, I want to know if this includes a cruise or 5-star hotel with meals (lol). Seriously, I wonder what he does during this visit to justify charging $3,000 - $4,000. What health insurance is going to cover that?
anyone here or anywhere having noteworthy results from his treatments . A few people like his supplement drink with vitamins , but others did not .
Unless a doctor has LOTS of patients who are getting there lives back and make significant progress , I would NOT invest 4,000 dollars.
The only lady I knew who saw Dr Cheney ( big $$$$ CFIDS
"expert") never improved , and died at 48 of cancer .
A lot of docs write books and give lectures , and sell videos and tapes . But are they REALLY experts on this disease ? NO ! There are no experts on this disease .
And as far as I know, there are NO doctors who can post
a significant cure rate .
There are docs who try different protocols, but you can take their ideas to your own doc and ask for his cooperation , if the protocol does not have big risks .
I am getting better. I go to a doctor who trained in the Teitelbaum protocol, and my insurance covers him. He is not expensive.
The Teitelbaum protocol is to implement all helpful treatments, not just one thing at a time and wait to see if it helps.
The areas they treat:
They also manage pain.
This doctor got my insurance to pay for xyrem, which is giving me deep sleep. I am seeing the effects of getting growth hormone thru delta wave sleep, and that's making a world of difference in my life. I do hope for a complete remission, because of the improvement I continue to see.
Once I feel good and strong for 6 months, I'll start backing off treatments, one at a time so I'll know what I can do without, and what I need to keep. Once I'm 'cured' I realize I always will have the chance of relapsing and will always be vigilant about getting run down, or taking care of anything that pops up with whatever helps me.
I couldn't afford to go to Dr. T himself, but know of one person who did. They had such a complicated, horrendous case, that they were near death (adrenal failure). He did help that person. They only do occasional phone consults now, and are continuing to improve.
I don't know...I agree with some of it and not with some it. I think with ANY doctor you have to take what they say with a grain of salt and weigh the pros and cons.
What works for one may or may not work for another.
I do agree with his point that getting 7-9 hours of sleep at night is CRITICAL.
I also agree about some of the dietary things and supplements such as magnesium and B-12.
Not sure about starting all these thyroid and adrenal supplements even if your blood levels are normal. That could be VERY dangerous.
He also seems to be very SSRI-happy and even says you can take some of the "natural" serotonin boosters (St John's wart, 5HTP, etc.) WITH an SSRI. This is VERY dangerous!!!
Please be careful and weight the pros and cons of ANYTHING. I would not start taking massive amounts of supplements or medications at one time. We are so sensitive to EVERYTHING.
thank you all very much for your input; this board is really great! I have been on here so long and never really utilized it like I have been lately. I have had it with this illness cfids 4.5 years... and determined to find something that will work for me. so I am checking out ALL Avenues(at least as much as I can; there ARE so many, gets soo confusing. Well it looks like anything else; what will work for some may not work for others.
Lamotta77; After reading his book a few years ago; I felt the same as you and still do. I AM SO Very Intolerant to drugs; its ridiculous; so alot of his tests,etc do sound TOO agressive for me. I cant even take a tiny; i mean TINY pc of any antidepressant; it makes me feel weird. I would probably have to go to ER if I Took A whole pill.lol
Hayleycore; I was wondering; I take b-12 shots 1mg/wkly. How long have u been on it daily? Doesnt he say( cant remember for sure) to lower it to once a week after awhile? Sometimes i do wonder myself if i would feel better if i took it every day. But the docs always scare you and say "Thats way too much" so i get scared.
Jewelra; I agree with you about some of the things he says to do sounds like it would be dangerous; my doc years ago when i first got this thing; said his theorys,pills etc sound too aggresive. And she didnt even believe in cfs, not really anyway, so omg i cant imagine what some of his pills etc would make ME FEEl like. I guess there are others with cfs who can tolerate it.
thank you all again and daisy I am glad its working out for you and not costing you a small fortune. Dr T must be very well off.
How did you get the B12 shots? Is Rx needed? I heard Dr T speak and I am trying some of his powders and sleep ideas but I am backing off a little as it caused aflare up but I will keep trying. I am just so sensitive to everything!
I first saw Dr. Teitelbaum about 17 months ago. Since then, I've improved significantly, although not well yet. But my quality of life is much better, and I'm able to do much more than I could before. My husband rates my improvement, on a scale of 1 to 10, as moving from a 4 to a 6.5. Mind you, I had taken 15 years to improve from 0.5 to 4, so this is dramatic relative to my past. Also, to be fair, you have to know that in the past 9 months I have moved twice and finished an MS thesis in biology, which I don't believe I could have done before starting his protocol. And, if I hadn't gone through all that stress, I'd probably be even better now.
Yes, Dr. T. does cost a lot, but so does being sick. I lost my job as an engineer 16 years ago, and although I've had disability ever since, it doesn't compare to my previous income. So I look at his charges as an investment in my health and my future ability to work.
I believe Dr. Teitelbaum is an expert in CFS/FM/whatever. He's had it himself, when he was an intern, and had to postpone his internship. So he understands it from the inside out. Also, as a biologist myself, I can tell you that his hypotheses make a lot of sense to me, and some are very similar to my own hypotheses based on my studies and my illness.
In short, I could go on and on about what a wonderful doctor he is, as well as a wonderful, compassionate person. But I realize that most of you are not in a position to see him personally, and that's why he wrote his books. I would urge everyone to read his book, ask your own doctor to read it, and try to work with it to find what will help you. You will have to experiment with different therapies to find your own best protocol, but his book explains the rationale behind each and how best to use them.
[This Message was Edited on 09/08/2006]
[This Message was Edited on 09/13/2006]
I found my alternative Dr. through Teitelbaums website. I am doing many things from his book. It is very, very expensive. I am spending $600/mo just on supplements and I do the IV therapy and injections for another $300/mo. Fortunately my insurance pays for 80% of the IV and injections. I am better. I have been doing this for over 2 years now. I want to make it in my profession for 5 more years and I knew if I didn't do something drastic I wasn't going to make it. It is a huge expense but if it can see me through retirement then it will be worth it. Good luck.
I owe a huge debt to Dr. Teitelbaum & his book. It was through his book that I finally understood my illness and sought to get an accurate diagnosis, but more importantly effective treatment.
I really began to see significant improvement after taking many of his supplement recommendations for 6 weeks. I started taking what made sense to me financially and from my symptoms based on the ideas in his book. I found this website looking for a less expensive source of NADH.
Once I found the message boards I was intrigued by some of the other users comments and experience with the hypercoagulation theory and treatment. He touches on this in his book too. I decided that this was a treatment worth trying.
Another user on the message board suggested calling the laboratory that tests for hypercoagulation for a doctor referral. I found my most wonderful rheumatologist that accepts insurance and understands CFIDS/FM. I have regained my previous life. It took 2 years of active investment on my part and yes a lot of money on supplements (which are tax deductable when prescribed by a physician) and treatment for hypercoagulation and infectous agents.
I was close to not being able to work anymore. Now I'm working full time and effective at it. And my husband & I are adopting two preschoolers. I can't believe how full my life is! I still have my bad days, but nothing like before. A bad day now is I take a two hour nap or go to bed early. Not lay in bed all day.
Love & Light to all-
Dr. T is now working with the Marshall Protocol and that is not an expensive treatment if you have insurance. He has seen his patients improve with it and is allowing people at the FFC centers to use it if they request it.
He is the new director of the FFC centers.
There are many old timers that use to post here that are improving on the marshall protocol. I am one of them. Others drop back in from time to time.
The FCC clinics use Dr. T's protocal. I am reading the book, and go to the FCC in Philly. I believe they know alot of what they are doing, what to test for , and how to help you
Bumping for more input
He may be one of the best, but I think anyone who charges that kind of money when he really has pleanty of it already it unbelieveable.
He knows almost knowone with this horrible disease can afford to see him or go to the FFC's. And many here have to basically mortgage their house to do so. What surprises me most of all, he had CFS. It potentially could have ruined his career. So how does he get off charging that kind of money? Cheney does the same, and so does Lapp. The only one I know of who is a famous CFS doc and will work with your insurance is Dr. Enlander. At least that says something about his character. And I believe Dr. Klimas if you can get an appointment also works through the University with your insurance.
You may want to check into Dr. Lucille Bateman as well, she is supposed to have a very good repuation, don't know if she takes insurance. Just my thoughts! I think it is really sad how little the healthcare community offers us!!!
I wonder about his charges too. It would be helpful to understand how he comes up with that fee - what the breakdown is - maybe it is all ligitimate, however it is unaffordable for most of us.
Glad I can get his book from the library and not have to buy it!
Still, though, if it really, really worked, and not just for a few months. If it really worked, if I could hear from a majority of people who have had continuous improvement and 2 years later are still feeling at least 75% better, then it would be worth the cost.
Anyone else have personal experiences they can tell us about?
I made an appt to see r Teitlebaum. His office fee for 4 hours was $5,000.
Instead, I went to the FFC who I thought was cheaper.
It turns out they are not cheaper and they didnt give me the individualized treatment plan That I should of had. Im now back at square one.
Im now making progress using Teitlebaums protocol. I seriously considering using him again. He sees pts in his Hawaii office....I know I know-what a life! (my SIL lives there, so maybe a vacation is needed for recovery)
On the other hand, My SIL has breast cancer and she is seeing a doc who had breast cancer as well. I think her out of pocket expenses so far have been 62 thousand dollars. She did every conveivable alternative treatment to increase her odds of survival.
Was it worth it?
I would say yes!
Im way sicker than see is, so I think spending money to potentially give me a life would be worth every last cent.
Love and light,
OMG, shoot me! That's unbelievable! I had no idea. I first saw his online protocol last year and between him and Cheney's, I read and studied them, decided which symptoms I had and then started using ALL the supplements they recommended for those symptoms. They have alot of supplements in common.
Long story short, they're working. And I didn't even have to pay either of them anything! I kept going to doctors but all my bloodwork is always normal and to all the doctors I've seen, patient complaining of serious debilitation + normal blood tests = hypochondriac in desperate need of psychiatrist + antidepressant.
I had liver issues and can't tolerate meds anyway, so supps were the only way to go for me. I had tried almost all of them before, at one time or another, but just not all at the same time. When I took everything together, I started dramatic improvement and I'm still improving constantly. Slowly, but surely. I'm in no hurry to force myself back to normal. I had been completely bedridden needing to be hand fed and everything.
As far as I'm concerned, Teitelbaum and Cheney are geniuses. I didn't know they were that expensive, but anyone can look at their protocols for nothing. I really got alot out of just reading them. It took me a long time to understand and look everything up, though. I had liver issues and had to make sure all the supplements I took weren't going to make my liver have a harder time than it already was. Here they are:
I suffered in bed for almost 4 years with ups and downs before I finally put it all together with these 2 guys' protocols, supps only. I'd say they're definitely working.
[This Message was Edited on 02/16/2007]
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