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i really don't want to depress anyone. i'm having a very hard time accepting the fact that i can eat nothing. i am still having 2 protein shakes, carrot juice. must drink between 8 and 3 or have major gerd. am losing major weight. went to gastro to find out how much narrowing is in jejunum, even after talking to radiologist. he is clueless, wants me to go to surgeon see about that and gallbladder. also wanted to possibly do cat scan. i have had barium swallow, and cat scan of gallbladder this month and have seemed to go down hill since may1, could at least eat salad before 4. went to primary care dr. who wants me to have cat scan for cancer since can't eat. read dr. f's site last nite said if kidney, heart, digestive, & lung involvement usually was terminal. wow, this is all too much. really just rest alot. come to work but have a cot that i rest on off and on throughout the day. i am blessed since we have a business and i can lay down, not really feasible, but can't hardly make it to work. please be praying. need a miracle about now! this disease or something has really taken it's toll.
My grandmother had pancreatitis and ate little more than chocolate chips it seemed for years. Now I wonder what disease she may have really had – what we all really have. You will be in my prayers, tish.
Tish,
Prayers are sending your way!!! Please keep us posted. Have you checked if you have systemic scleroderma (with only organ involvement)? I am not doctor, I am just thinking, if you cannot tolerate pill form minocin, is there any muscle injection minocin you could use? You may consider to order some Advanced Ambrotose. They have powder mixed with water. This may help to supplement with your lost nutrients.
Don't read too much from Internet, sometimes it just makes you depressed. Rest when you can. You are sure in my prayers!!!
JB
Could you be Celiac as well as all the other issues? Sorry you feel so bad. ((hughughughughughughughug))
Jenn
Tish,
So very sorry you're feeling awful right now. Do hope you can get answers quickly to get things turned around.
Wishing you the best…..kim
Tish, you are in my prayers. Please keep us posted.
— whaleharbor
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
Tish,
Am so sorry to hear about your difficulties at this time. I don't know if your present doctors are familiar with the AP protocol, and all the hazards that go along with a diagnosis such as yours that just may be turned around, using the “best” therapies. If they are not, they may also not be aware of some of the little-known things that can be done.
Cheryl has indicated she is sending you a PM. She has dealt with a lot of issues for her daughter. I'm hoping she has some suggestions.
Please don't give up. There is much that can be done; and many answers that most physicians haven't learned about or pursued.
Will be away mostly for the next two weeks, but you will be in my prayers — prayers for guidance that will take you on the best road for your recovery!
AF
Your symptoms seem a lot like my symptoms 4 years ago, when after going to a lot of doctors including the Cleveland Clinic, I went to a local gastroenterologist, who suggested I have a test called, ERCP (Endoscopic Retrograde Cholangiopancreatography) a long name for a test that doesn't hurt. However, one has to have insurance.
This test is about the same as an Endoscopy, except it can go further down even past the stomach. He found that I had cancer of the small bowel (ampul carcinoma), and sent me to a surgeon who does many, many of the operations called a Whipple Operation. I had to have no radiation or chemo because they figured it was all enclosed. One must go to a surgeon who does a lot of them, and I had to go to Tampa, FL, 2 hours away, for it. It took awhile to get over the Whipple – about 2 months.
I don't want to distress you, but an ERCP helps a lot in diagnosis. It is quite an easy process, and you are ready to go home in a hour. All I am really saying is: Have you seen a gastro person? Nancy Blake.
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SD (CREST), 2000
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