Rare Diseases Community
In Desparate Need of help
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This patient support community is for discussions relating to rare diseases and disorders. Some example include: Aarskog syndrome, Acoustic Neuroma, Angelman Syndrome, Behcet Syndrome, Bell’s Palsy, Canavan Disease, Carbon Baby Syndrome, Charcot Marie Tooth Disease, Chromosome Monosomy Disorders, Chromosome Trisomy Disorders, Devic's Disease, Dystonia, Ewing’s Sarcoma, Fragile X Syndrome, Immune Thrombocytopenia, Kawasaki Syndrome,Maple Syrup Urine Disease, Mastocytosis, McCune Albright syndrome, Pachygyria, Polycystic Kidney Disease, Prader-Willi Syndrome, Reiter’s Syndrome, Sickle cell anemia, Sturge-Weber syndrome, Trisomy Disorders, Usher Syndrome, Xanthinuria, Zollinger-Ellison syndrome.

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In Desparate Need of help

Don't know how to make this brief but here goes a try. I was very healthy, felt fabulous everyday and in 1984, I got violently ill with severe, SEVERE night sweats, vomiting, fever and literally couldn't get out of bed to the bathroom without help. I thought I was dying, laid in bed and moaned all day and night. After 3 days I was getting worse, not better, so I was hospitilized in Jackson Memorial in Miami and due to the time and symptoms, immediately they thought I had HIV or full blown AIDS. After a week in the hospital, the doctors kept asking me if I was sure I wasn't going through drug withdrawals because they had run every test imaginable and could find nothing wrong with me. I wasn't using drugs, BTW. Finally they released me after another week and said they could not determine what had caused my illness. It took 3 weeks to start feeling better. Then I went back to being totally fine for aproximately 2 years and I know this sounds totally crazy but one day was driving with a friend to Cocoa Beach and felt like a "cloud" came over me where I just didn't feel good. In a matter of seconds I went from feeling fantastic as usual. Literally ever since that day I have been afflicted with this "illness" where I just never feel right. I am not depressed, I have been put on every anti-depressant and it does nothing. My eyes are ALWAYS bloodshot since that day, were as white as sheets before, my joints ache slightly, I have a low grade fever usually around 99.3F, I can barely get in the shower every morning to go to work, never have any energy, I can't drink alchohol any longer, it amplifies my malaise, instead of getting lightheaded and cheerful, I get depressed and sick feeling. No loss, I was never a big drinker anyway. My yearly physicals all check out fine. Aproximately 4 or 5 weeks a year, I will get days, sometimes lasting for a week or more at a time that I feel totally normal again, fantastic and want to go out and conquer the world. I pray that whatever has been wrong with me is finally over, then I wake up one morning back feeling like I have been the last 20 to 25 years. I am tired of doctors telling me there is nothing wrong that they can find. This is probably coincidence, but in Miami, a few days before I was hospitilized I was giving myself daily enemas due to constipation and noticed weeks after I was back at home the enema bag had a black mold or fungus in it, and have always wondered if that could have had something to do with this and have always been to embarrased to mention it to my Doctor. Also EVERYTIME I test for Lyme disease, it comes back positive but upon further testing am told it was a false negative. Also the test for Tuberculosis does the same. I lived in Paris, France from the time I was 14 until I was 22 and traveled throughout Europe and North Africa. I developed aural epilepsy at 42 yeras old. I only get "Auras" (Mild partial seizures) and a catscan reveals nothing other than possible small amount of scar tissue on a small part of my brain. Please, any advice would be greatly appreciated.
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selmaS
Allentown, PA