Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 Hi , Welcome back :-) You mentioned your scleroderma. You might want to read Henry Scammell's book entitled SCLERODERMA: The Proven Therapy That Can Save Your Life. It outlines the treatment based on Minocycline (Minocin), and the small clinical trial used to prove this theory was led by none other than........Dr. Trentham. If you do decide to go with the Minocin for your scleroderma, you might also be attacking your RP at the same time. Dr. Trentham uses it for some of his RP patients. Also, you might want to check out the following sites: www.roadback.org The Road Back Association is where you will find more information on Henry Scammell's book. He was recently named president, so he is wearing several hats these days. Most importantly, I feel that he is an honest man and truly believes in what he writes. www.immed.org This is Dr. Garth Nicholson's website. He has some interesting ideas concerning these diseases, and also mentions cancer.....another disease of the immune system. http://www.canceroption.com/ This is a cancer treatment site and Dr. Nicholson is one of the directors. (or something) They have had impressive successes recently. Hope this helps, take care, Connie H. <<<<<<Original Message>>>>>>> Subject: Hi and HELP Please. " Hi, I really need the Rp groups help. My doctors have asked to see if anyone has had this problem and HOW it was dx and treated. What worked and what did not work. My trachea is collapsed on one side form the esophagus down to the bronical tree. They have been able to control this with a Bi-Pap machine. The pressures are 17 inspiration and 14 expiration. Do to the extent of tracheal involvement stenting is not an option at this point in time for me. Several months ago, they discovered that I had sclederma and an esophageal aneurysm that compresses the trachea when inflated on the other side. This also they have somewhat under control. Both the trachea and my esposhgus and almost all internal gi parts are hyper sensitive. Now comes the tricky part. The thyroid cancer that has been very slow in growing has now developed nodules. Two rest directly on the tracheal one the left and ride sides. These guys swell and constrict. But it is totally unpredictable. The left portion of what I'm assuming is the thyroid is very firm to hard. Both nodules can be palpitated and felt. Even by a lay person! The ultra sound shows hard and soft nodules of veries sizes. The left one appears to be partly inbedded into the trachea. The MRI that was done also show hot and cold defects. The colds defects are the ones that have all of us worried, plus the nodules that are resting on the treacha. I also do not respond to synthriod. Even in extremely high dosages. My Doctors do not want to resort to surgry do to the extreme amount of meds they would have to give me to put me under. So now I have multiple problems addressing the air intake. Once my lungs get the air they now what to do with them. I have been to the point of passing out, and extremely weak with a headaches. The E.R. doctors would really like me not to see them. Which I agree. Has anyone had problems with their thyroid or the glands in their neck and can possible tell me what tests they had and what type of treatment helped? " I would be most grateful. Respectfully Rutledge skyfireranch@... Re: dehydration and water! > >Date: Fri, 6 Oct 2000 15:53:39 EDT > > > >Carmela, thanks for your input. I think I've been doing everything all > >wrong. I've stopped taking the folic acid the day before and the day of > >the > >metho. Then continue it the rest of the week. I guess I should cut down on > >the water too. I'm going to see if this helps. Thanks again. (maybe this > >is > >why the metho isn't working for me.)LOL > > > >Hugs > > C > > _________________________________________________________________________ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. > > Share information about yourself, create your own public profile at > http://profiles.msn.com. > > > > ________________________________________________________________________ > ________________________________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
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