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Old 03-11-2010, 08:16 PM   #1
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Teitlebaum...guaifensen...How to choose?

Hi all. I am having a really bad day with my FMS/CFS because it's just overwhelming trying to decide whose program/protocol to try.
I can't continue to live like this...with chronic pain and fatigue. I feel like I'm not even living my life.
I am doing a major overhaul on my diet (no sugar or gluten) and starting Cymbalta next week. Am seeing the doctor next week also and hoping we can try low daily dose of thyroid medication.

But beyond that, I find it hard to decide which treatment plan to try.
Dr. Teitlebaum recommended about 100 supplements...but they seem to make sense. I have heard good & bad things about Guaifenesen protocol.

How did you all decide where to start?

thanks,
amy

 
Old 03-12-2010, 05:20 AM   #2
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Re: Teitlebaum...guaifensen...How to choose?

Bosanova, you are to be congratulated for just getting up and trying to get ahead of this mess. There are a few sites that review supplements -- just look up acuatlanta, nccam health supplements, mskcc supplements -- those are a few of the free websites. Consumerlab is not free but provides more in depth analysis of what's actually in each brand of supplement; i.e., does it have mercury or lead, does it really give you as much as it says on the bottle, etc. The acuatlanta one has a database of conditions that you can check and find supplements that match those conditions; the search will show you the A grade supplements that have been proven to help, the B grade ones that show some evidence to help; and I don't mess with those graded below B. I think the mayo clinic also has some info on supplements.

100 supplements seems a lot to me, although I do take a menopause combo pill that does contain 12 supplements--wouldn't go without that one. The best thing you can do is what you are doing, bosanova, and that is studying. I just found a printout from five years ago by Richard Gerwin about myofascial pain/fm and could not believe how well it predicted these last five years I've been through. Your doctor has like five minutes with you--not a lot of time for so complex a problem. Become your own specialist. I'm not saying it will help the sinking I-can't-be-this/I refuse-to-be-this feeling. I'm dealing with a lot of that myself right now, but what you are going through is real. And you need to be informed because there is a lot of evidence that our types get more unneeded surgery than most and our meds sometimes do more harm than good. The pain we experience is so severe the need for escape, help, hope is just enormous--that makes us way too vulnerable to quick decisions and apathy. Accepting you have this crap is not anything any of us do willingly, but it is dangerous not to accept that fact. Continue what you are doing and the best to you.

Last edited by baserockermom; 03-12-2010 at 05:22 AM.

 
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Old 03-12-2010, 01:14 PM   #3
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Re: Teitlebaum...guaifensen...How to choose?

I order Dr. Teitlebaums' fatigued to fantastic drink and it has all the vitamins in it that he thinks we need... cause he had fibromyalgia and knows what we need... it is a lifesaver for me... it works for real!!!

Last edited by moderator2; 03-23-2010 at 11:10 AM. Reason: please do not post websites except as described in the Posting Policy

 
Old 03-12-2010, 08:10 PM   #4
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Re: Teitlebaum...guaifensen...How to choose?

thank you both so much for the recs. will definitely look into them this weekend.
slp.....do you take anything else besides the powdered drink, or is the drink enough?

 
Old 03-13-2010, 11:03 AM   #5
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Re: Teitlebaum...guaifensen...How to choose?

I take the drink which has lots of vitamins..but then i also take fish oil, B-6, 1000 mg magnesium, and 800 mg of malic acid..the malic acid and magnesium are the most important things to take for fibromyalgia..they help to relax muscles..and Dr. T himself said they are important..

 
Old 03-13-2010, 04:24 PM   #6
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Re: Teitlebaum...guaifensen...How to choose?

Exploring options is such a good idea. Power is knowledge!

I'm on the guafenesin protocol. There are no bad things to report. The drug is well tolerated and does not cause allergic reactions. BUT, you will go through some cycling which can be down right annoying at the start. Eventually you do become better. You have to find the exact dose that you can tolerate and stick with it. If you dose yourself based on some self-formulation, you can find yourself in bad shape or possibly not have enough of the medicine in your system to remove the fibro gunk. So I suggest you read the book "What Your Doctor Won't Tell You About Fibromyalgia" by St. Amand (the pioneer doctor who developed the protocol). Make your own decisions. Do not let fear get in the way.

And, by the way, the reason I didn't start with the Teitlebaum protocol was the expense. Guafenesin is, by far, the cheaper of the two options. I'm so glad I'm cheap.

I was almost bedridden. I now ride ATVs, horses, bike ride, go fishing, enjoy life. This too can be you.

Kirstee

 
Old 03-22-2010, 08:22 PM   #7
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Re: Teitlebaum...guaifensen...How to choose?

Before Dr. Teitelbaum became affiliated with the Fibro and Fatigue centers he had a practice in Annapolis, Md. On a positive note, he was a very nice man and he and seemed to care. The things that I did not like is that he did put me on about 50 pills a day. The pharmacy staff and pharmacist treated me like a drug addict. My PCP told me how harmful this was to my body. Even so I continued to take these pills and continued to pay thousands of dollars at each visit with no results. During many visits with Dr. T I spoke with other patients who were also having no luck. I am not saying no one does because someone must considering that he is still in business. I do however know so many people who have gotten well on Dr. St. Amand's protocol. I am getting on that wagon right away!

Last edited by moderator2; 03-23-2010 at 11:09 AM. Reason: please do not post websites except as described in the Posting Policy

 
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