Question for Jen102....

Discussion in 'Fibromyalgia Main Forum' started by SherylD, Dec 7, 2005.

  1. SherylD

    SherylD Guest

    Thank you for answering my post(on Dr. in Northern IL.) I wish I was closer to Minnestoa. I would definatly check into that Dr.

    What did you mean by the Teitelbaum's protocols?? What kind of treatment is that?? And I am not firmilar with the Fibro and Fatigue Centers. I don't think that we have one in this area.

    Thanks again,
    SherylD
  2. Jen102

    Jen102 New Member

    Happy to pass on what I know. These are my opinions, and others may have different ideas about these things.

    Jacob Teitelbaum is a doctor from the Northeast (NJ?)who suffered from CFS and now has a practice treating patients with Fibromyalgia and CFS. He also conducts research which has resulted in products sold by Enzymatic Therapy and another major company--sorry, but fibrofog won't allow me to retrieve the name from memory. He wrote a book called "From Fatigued to Fantastic." He has a website with much valuable information on it. If you google his name and fibro, it will come up, no doubt.

    The Fibro and Fatigue Centers (google them and you will learn the locations and philosophy or mission statement) are discussed frequently. Maybe you could do a search by entering Fibro and Fatigue Centers or FFC above at the top of the page and you will learn the experience of others in this group. They have opened several boutique medical clinics throughout the US to treat those with Fibro, CFS, and connected illnesses.

    Teitelbaum, the FFC's, and my great doc, Karen Vrchota believe that these illnesses are not a life sentence. They believe that similar to other illnesses, you can get to the root of the cause, and eventually fix what is broken in your body so that you can regain a normal or near normal life. This is opposed to what I view in traditional medicine where the most they hope to do is relieve a few symptoms, tell you to have happy thoughts (eevn though your life is crashing down around you), and stop whining! (My opinion--sorry I get so fiesty, but I wish I could have gotten good medical advice and treatment instead of half-hearted cheerleading when I first became ill.)

    Teitelbaum uses a list of different meds and supplements and he tries different things for sleep, for example, until the right formula for you can be determined. He also believes in treating hormones, pain, start the mitochondrial furnaces, etc. I think the theory is to kickstart the body by fixing all of the things at once. His list is in the book and i believe on his site. He uses meds and supplements. I have heard some negative comments about him from this group--that the supplements were costly, that they thought he was profitting from the ill (I understand he doesn't get a cut from the supplements, but the money is used to research a cure, and unlike most docs, he doesn't accept money to talk at symposiums as it creates a conflict of interest). You will have to decide for yourself. I can understand people feeling bitter if they didn't find the right key, and spent alot of money but didn't get better. He certainly doesn't have all the answers, but is heading in the right direction, in my opinion.

    In my own healing journey, I continued to decline until this summer even though I employed all traditional and alternative therapies reasonably available--we just couldn't find the key despite dilligent treatment. This summer I started getting glutathione and magnesium iv's and they have literally saved my life. I am now making baby steps towards improved health rather than continuing to worsen. I am hopeful about the future. For the first time in 5 years, I went outside with my daughter and went sledding in our yard for a few minutes. I couldn't do this anytime I wanted, and I still have very bad times, but the important thing is I am improving.

    I hope you can find a good doc who will understand how sick you are and how hard you are trying to have a normal healthy life. I liked you bio. You enjoy so many things and have such a positive attitude. Now if you could have the health to be all you can be. Blessings to you. Jen102

  3. Jen102

    Jen102 New Member

    bumping so you don't think i blew you off. Jen
  4. SherylD

    SherylD Guest

    I am sorry I didn't respond sooner... Thanks for responding to my question!

    That sounds like what I need to get better. I just feel like I get a few things better and then they come back. Or nothing ever gets better... OR things get worse instead of better.

    You take drugs after drugs and nothing changes.. And for what. I get to the point of just saying forget and not take anything and I still pretty much feel the same no matter what.

    I feel that there is a REASON why I feel so bad all the time. I have a hard time excepting the fact of .. Just take this little pill and you are going to feel better. But I try it and usually feel way worse.

    I know this all effects everyone different but I seriously feel there is something REALLY wrong. I go gunho on trying to figure it out and then I think I give up after you try a few things and nothing works.

    Thanks again and sorry I am rambling on and on...

    SherylD
    [This Message was Edited on 12/07/2005]
  5. Jen102

    Jen102 New Member

    yes, I too feel there is something broken that maybe can be fixed. If we could speak more privately, I would tell you more what I have learned. I haven't used the chat room before, have you? Anyway, I found one of the keys to my health problems, and that the glutathione is necessary for me. I have been slowly improving since June and continue to improve, so will just see where it takes me before I try anything more. Also, I have had some improvement in my sleep, which seems so necessary for any healing. I go to bed around 9:30 or 10, after taking small dosages of several things (I am very sensitive to meds or supplements, but Dr. Teitelbaum suggests taking small dosages of more than one thing under the theory that we get the good effects but minimal bad side effects). It took me a long time to come up with the right formula, but it has been a blessing. I usually wake around 2 and take things again and sleep till morning, but then don't have hangover--yeah. This is a big improvement over past sleeping pattern.

    I am taking several hormones to supplement deficiencies. Hopefully my body will become stronger and take over production on its own. I am less dependent on hydrocortisone than I used to be, as I used to absolutely crash between dosages.

    I wish I had gotten this help before I became so ill. The doctors simply did not believe me, nor did they really know how to help. They don't enjoy treating us, because they have no treatments that work. My doc has something real to offer.

    Keep in touch. I am interested in learning who you find. You may wish to look at the ACAM website and see what docs are in your area, or Teitelbaum has docs listed on his website who have been trained by him and subscribe to his theories. Blessings to you. Jen102
  6. SherylD

    SherylD Guest

    I went on the sight for the Jacob Teitelbaum. Very interresting. I feel that all makes a ton of sense to me.

    I agree that it really involves hormones and all the other things that are listed. ( not really remmembering right now)

    I get soooo bad before I start my period. Every month. And now I think is not just the aches and pains and fatigue that get worse. It's everything, reflux, naseua, dizziness. And so on.

    I wish I could use more supplements. How do I go about finding how I am to use them. I just don't know what I am to use and how much. One thing I do use is the cherry juice. I know it makes me feel better.

    Also I love that they say that tests can come back fine but they are not. It makes me feel better knowing that. You go in and have test after test and they all come back fine and then you start feeling like you are going a little crazy.

    How would I go about seeing if there is a Dr. that would go by the Teitelbaum in my area?

    Thanks for you help,
    SherylD

  7. SherylD

    SherylD Guest

    bumping incase you didn't see it....

    SherylD
  8. Jen102

    Jen102 New Member

    on Teitelbaum's website on the left hand side is a section called "Resources" and under that is listed "Physicians". If you hit "physicians" you will go to another page in his site, and there you can see what physicians are in your state. I looked, and there are many listed in Illinois. When you look at the individual listings, they tell what trainings by Teitelbaum they have had. Again, I don't worship at the feet of Teitelbaum, but I like the approach that he takes. His "fatigued to FAntastic" book is quite inexpensive, about $10 and you can be quite informed before you visit your new doc. I like the list he uses of protocols. For example (did I say this before? Sorry if repeating) he lists many things that might help for sleep, and you just keep working at it until you find something that you tolerate and which works. I am extremely sensitive with a capital E, and yet I have finally found something to help me sleep without giving me a big hangover in the morning. Blessings to you. Keep us updated. I will be happy to hear. If you wish to give me the nearest bigger city, I could ask my doc who she knows in your area--she may or may not know someone--not sure how far away they know people. Jen102
  9. SherylD

    SherylD Guest

    Thanks for getting back to me..

    I did the check on the Dr. in Illinois and found them. I think that his book would be interresting to read. I think that I will start there and see. Then maybe I can find a Dr. if that is the way I would like to go with it. I really appreciate all your advice and help.

    Thanks again,

    SherylD