|
[ Multiple Chemical Sensitivity Archive ] [ Main Archives Page ] [ Glossary/Index ] [ FAQ ] [ Recommended Books ] [ Bulletin Board ] |
Search this site! | |
Dear Dr. Stoll,
Before I tell you my story I want you to know that I have done a great deal of research on my condition and have tried ,not to succesfully, on my own to heal myself but most of the time to no avail.
In the summer of 1983 I was doing my normal jog around the park and was suddenly unable to finish. I had had a concusion due to a car accident a few days earlier. Tremendous fatigue came over me and that was the beginning. During the first three years of this I had constant low grade fevers, flu symptoms, and all of the typical symptoms that occur with this condition. I dropped out of school, moved back to my parents, and basically became an invalid at the age of 23. Of course like everyone else, I was in the Dr's office constantly. Finally, by sheer force of will I forced myself out into the world. Ever since that time it has been a daily battle. Of course, my physicans have told me until recently that it was all phycosomatic.
I answer yes to most every question in the Candida questionaire (particulariy those concerning lots of gut and bowell problems, I take Prilosec) and can answer yes to most CFS questions. The flu symptoms aren't as frequent as they used to be unless I over exert myself. I went to Manhattan for a week and was determined to have fun and forget all of this. I got sick on the last day and had to come home and lay around. I did not do anything that would be considered bad for myself such as drinking etc. except just filling the day up with activities. The fatigue still persists all hours. Luckily, I have a job where I can make my own schedule. I frequently go home to take naps. Sunday is my biggest day at work so i have to spend every Monday lying around. The newest symptoms that have become most intense is an almost total inability to concentrate and to remember anything. I forget names of folks I've known for years. I also had a neuorpathy in my feet that lasted for two years and just three days ago had a sudden stabbing pain in my foot that sent tingling up my left side. It went away after twenty minutes but I was left with a weakness in that leg for two days. It's basically gone now. My vision has also gotten very blurry. I am 40, however and the eye dr. gave a prescription for glasses. I've had strange fungi on my feet and legs and tongue, just a myriad of wierd, abnormal stuff that the Dr. seems to think is ok. You know the score; every symptom I came in with, I was given a different drug and they were all making me sick. I've even had 2 yeast infections on my penis from two many antibiotics. He gave me diflucan and for some reason that combined with all of the anti depressant drugs and other drugs made be very ill.
Four years ago I was diagnosed with BP disorder. I firmly beleive this has evolved from trying to cope with 18 years of being chronically sick. Of course I've been on drugs which have caused more problems. I took my self off of a couple of them. I've been in a day hospital for mental care for a month once and also checked myself into a clinic because I was suicidal. Every once in a while I just freek out beacuse no one will take my symptoms seriously.
My Doctor has finally admitted to me probably having CFS. because I showed up positive on an Epstiern Barr titer test that I had a Dr. friend of mine do because my doc wouldn't do it. He still will not tell me what to do however. I brought him some info on some of the theories such as low blood volume on some CFS patients. Maybe he will read. Tonight he's having me moniter my sleep in order rule out sleep apnea since I basically never have a restful nights sleep.
Once I put myself on a anti candia diet. Perhaps I went about it to severely and all at once. I lasted for three months. I think I felt better but the food prep etc. became so complicated that I had a hard time balancing my life and doing all of that. I think it was probably too extreme of a diet too quickly.
These are the meds I'm taking now. Depakote 500 mg/Wellbutrin 300/ claritin 20/ Prilosec 20/Flonase nasal spray.
I was on Paxil. They took me off slowly and phased in the Wellbutrin and I had horrible withdrawals. That's when I became suicidal the last time. I'm also supposed to be on Serzone. I took my self off of that.
Several months ago I was given the glucose tolerance test and my Dr. told me I was diabetic. I think it's severe food allergies. He gave me drugs of course. I noticed that when I adjusted my diet my levels were fine. So, I stopped taking that mediceine. When I do check my sugar it is usally too low; in the 70's low 80's. My moods and physical well being are greatly influence by what I eat. I usually have a 15 minute energy burst after I eat then I feel disoriented with blurry vision and I wast to sleep.
The diagnosable (by western standards) illnesses that I have Had are Hepatitis (first they told me "B" then they said it was non-descript, what ever that is.) Pneumonia amd I recently had my appendix taken out. It was slighlty torn. An interesting part of this was I had to go back into the hospital after I was released for 2 days bacause my intestines just stopped working. I was off of food for a week. They claimed it was trauma from moving them around during the operation, whatever. It took me 3 months to recover.
I will tell you that I am gay and that in my early life I was very wild. I've had lots of oppurtunity to contract many viruses. I did have some std's in my 20's. I've been tested for AIDS many, many times and am negative. Obviously when this all started I thought that was what I had.
As you might guess, I'm at my wits end. I love my work (church music director) and I would love to have a life that wasn't just barely surviving. I'm basically and outgoing guy who has been sapped of any desire to live happily. What
I desire most of all is a physician who will believe me, one that I can trust, and one who will give me some sort of diagnosis, and a structured plan of attack which I will follow. I've tried just doing this myself. The information is too vast and much of it conflicting. Usually I make myself sicker. I tried a thing I read with supplements and some herbs. Didn't work. I feel there needs to be an individual to guide me. I would appreciate some references of someone I could see. It would be great to be able to drive to Florida and see you. Just some one who beleives and is serious about helping someone!
I think it's wonderful that you're doing this and I appreciate it Dr. Stoll. I hope you can get me on the way to being healed. Yours truly, Bryan
In Reply to: Cfs, Bi Polar Disorder, Candida posted by Bryan on March 20, 2001 at 20:26:02:
Have you been tested for Hepatitis C? If you got tested for Hep before this test was available, they would tell you that you have non-A and non-B hep. Hep C is believed to be transmitted in the same manner as AIDS. Hep will make you extremely fatigued. If you have chronic Hep C, this fatigue can go on for many years and cause the Epstein-Barr results that you are seeing too. Chronic Hep C, as I understand it, has about a 50% mortality rate. It is a very serious condition which can lead to liver cancer or serosis (sp?).
What can you do about it? Eat a low fat diet, drink lots of fresh water, eat lots of fresh fruit and stay away from drugs and alcohol. Get tested for it and see. Ask if you can have interferon(sp?) treatments. As far as I know, that is the only traditional medicine treatment for it. I would also seek accupuncture or therapeutic massage to rid your body of toxins. Toxins are the enemy of your liver. You can have a liver biopsy to determine the extent of liver damage should you test positive for Hep C.
A GI doctor is probably your best bet for treatment.
In Reply to: Cfs, Bi Polar Disorder, Candida posted by Bryan on March 20, 2001 at 20:26:02:
Hi, Bryan.
The most likely scenario that fits EVERYTHING you have mentioned is MCS (Multiple Chemical Sensitivity) and it easily could have been precipitated by your concussion--at least the Brain Allergies susceptibility to it. There have been several replies about this within the past 2 months that are not yet archived.
My first suggestion would be to get a copy of Dr Phillpott's classic "Brain Allergies" OR the newest edition of that book (I forget the title). Next would be to find a good Clinical Ecologist in your area while collecting copies of ALL your medical records for your HOME files.
This has been going on long enough you need to approach this with deliberation so that this is finally the end of it.
You will have to deal with the LGS which is close to the basis of all of this and, since this will take about a year to help, you need to get started right now while dealing with all the rest. Alexander Technique OR Feldenkrais will help you help yourself.
See the glossary and archives about MCS, Clinical Ecology and LGS---- as well as any unfamiliar terms.
If I knew what part of the country you lived in I might be able to refer you to a good C.E.
I hope you will take the time, as you get well, to share your experiences. When people see how much you have helped yourself, in spite of the advanced nature of your condition, they will be encouraged that they, too, can help themselves.
Walt
In Reply to: Cfs, Bi Polar Disorder, Candida posted by Bryan on March 20, 2001 at 20:26:02:
bryan
i am not EXACTLY like you, but the extent of many similaritites in my case to yours is striking. Maybe biggest of them is knowing how the eccentric ups and downs of life can interact so devastatingly at times with "unresolvable" health issues. When you are by nature far left of center to begin with, and then crazy problems push you out EVEN way farther, you can quickly arrive at a place so unfamiliar that death looks rosey by comparison.
What finally began to help me the most was following the appraoch for someone with multiple chemical sensitivity. later confirmed, this becomes defeatable with the right techniques...but those techniques are little known in the medical field.
Dr Stoll is SO right. Find a good clinical ecologist (not just a regular "member" of the American Academy of Environemntal Medicine, but one with more advanced training-- this would be my advice). Your doctor is worthless to you. STOP TRYING TO GET HIM TO CHANGE HIS STRIPES. I went through about a dozen of them before i realized they were all selling the same wine, only in different bottles.
Dr Stoll -- VERY EXPERTLY-- has put you on the way to being healed. I wish I had known about him and his approach four years and $27,000 ago.
In Reply to: Re: Cfs, Bi Polar Disorder, Candida... trinangulation posted by leon cavallo on March 22, 2001 at 11:22:19:
Thanks, Leon.
Walt
|
[ Multiple Chemical Sensitivity Archive ] [ Main Archives Page ] [ Glossary/Index ] [ FAQ ] [ Recommended Books ] [ Bulletin Board ] |
Search this site! | |