Hi everyone, I know, large gaps between my posts. Honestly, I haven't really felt like rehashing history these days. So I think the next post be my last post to talk mainly about the past. I will refer to past things, I'm sure but mostly stay in the now.
A lot of well meaning friends made suggestions to me but when they suggested The Environmental Health Center in Dallas, (I'll be calling it TEHCD for the remainder of this post)
they were really adamant about how wonderful and helpful it was. How people flocked from all around the world to see Dr. Rea. Well this was several years ago (This should have come before the baby posts because it happened before I had my second daughter so I am guessing it was about 9 yrs ago? don't remember anymore without digging up my papers... oh the damned fibro fog)
Anyway what they do at this place is really interesting, although EXTREMELY expensive. It's unbelievable when you see just how many people have environmental allergies. We flew from Northern California to Dallas to have our appt with Dr. Rea. I was to stay there several days to a week to have tests done and other things.
It was wild to see how many different people with different illnesses were there. I specifically remember this one guy with his head wrapped in foil and stuff to keep e.m.f. out of his head. It seemed so sci fi. But Dr. Rea who does travel around the world and give lectures and writes books and things is truly admired by many. He ordered tons of tests. Such as a stool test to see if anything strange was in my intestines.
Now this was back when I was still really really ill and the fibro diagnosis was fairly new. He had me see a nutritionist and also do a thermography of my breasts. Which, by the way is not just WAY safer than a mamogram but also detects breast cancer way earlier than a mamogram. Why, then aren't mamograms put aside and thermography used instead? Simple , they cost more. So the industry would rather have women die of breast cancer than spend more on thermography and educating techs to use thermography.
My aunt has breast cancer and she says it is the same with certain body scans which show whether the cancer is likely to spread. This could save millions of lives but insurance doesn't cover it so people don't really know about it or do it. She did it out of pocket. You only have one life, right?
Anyway, sorry to stray off the topic. The nutritionist insisted I keep a journal and do a rotational diet to find out what foods trigger my symptoms. Something that sounds easy but is really hard for someone who is constantly nibbling like I am.
They also had this really cool all glass sauna. We had to take different supplements before (like niacin and organic oils) before the sauna and several ones after. We were given these huge jugs of purified water that was specially brought in in 10 gallon glass and put on coolers. Everything was specialized as to not have any type of allergic reaction for anyone.
After the sauna, we showered and had a detoxing massage.
The main thing of the EHCD was the allergy testing. It was unlike any type of allergy testing they do anywhere else. You had to sit in a room everyday for hours with other patients and the tester. Every 15 minutes he would inject you right under the skin with the allergen. They had everything from mold spores, foods, plants, chemicals , you know it. I think it would have taken months and months to be tested on everything they had. It was injected right under the skin and circled. Then in the 15 minutes they watched you to see what reaction you would have to it. Then they recorder your reaction or lack of it and move to the next agent. It was fascinating to see the reaction of some of the other patients. There was this one woman who a minute after being injected with something, began to cry hysterically. As soon as the tech injected her with anti histimine she just calmed down. Wow, what a reaction! The poor woman was stunned herself. If I remember correctly you couldn't have more than a certain amount of allergens injected to you per day because it would over do your system.
A lot of well meaning friends made suggestions to me but when they suggested The Environmental Health Center in Dallas, (I'll be calling it TEHCD for the remainder of this post)
they were really adamant about how wonderful and helpful it was. How people flocked from all around the world to see Dr. Rea. Well this was several years ago (This should have come before the baby posts because it happened before I had my second daughter so I am guessing it was about 9 yrs ago? don't remember anymore without digging up my papers... oh the damned fibro fog)
Anyway what they do at this place is really interesting, although EXTREMELY expensive. It's unbelievable when you see just how many people have environmental allergies. We flew from Northern California to Dallas to have our appt with Dr. Rea. I was to stay there several days to a week to have tests done and other things.
It was wild to see how many different people with different illnesses were there. I specifically remember this one guy with his head wrapped in foil and stuff to keep e.m.f. out of his head. It seemed so sci fi. But Dr. Rea who does travel around the world and give lectures and writes books and things is truly admired by many. He ordered tons of tests. Such as a stool test to see if anything strange was in my intestines.
Now this was back when I was still really really ill and the fibro diagnosis was fairly new. He had me see a nutritionist and also do a thermography of my breasts. Which, by the way is not just WAY safer than a mamogram but also detects breast cancer way earlier than a mamogram. Why, then aren't mamograms put aside and thermography used instead? Simple , they cost more. So the industry would rather have women die of breast cancer than spend more on thermography and educating techs to use thermography.
My aunt has breast cancer and she says it is the same with certain body scans which show whether the cancer is likely to spread. This could save millions of lives but insurance doesn't cover it so people don't really know about it or do it. She did it out of pocket. You only have one life, right?
Anyway, sorry to stray off the topic. The nutritionist insisted I keep a journal and do a rotational diet to find out what foods trigger my symptoms. Something that sounds easy but is really hard for someone who is constantly nibbling like I am.
They also had this really cool all glass sauna. We had to take different supplements before (like niacin and organic oils) before the sauna and several ones after. We were given these huge jugs of purified water that was specially brought in in 10 gallon glass and put on coolers. Everything was specialized as to not have any type of allergic reaction for anyone.
After the sauna, we showered and had a detoxing massage.
The main thing of the EHCD was the allergy testing. It was unlike any type of allergy testing they do anywhere else. You had to sit in a room everyday for hours with other patients and the tester. Every 15 minutes he would inject you right under the skin with the allergen. They had everything from mold spores, foods, plants, chemicals , you know it. I think it would have taken months and months to be tested on everything they had. It was injected right under the skin and circled. Then in the 15 minutes they watched you to see what reaction you would have to it. Then they recorder your reaction or lack of it and move to the next agent. It was fascinating to see the reaction of some of the other patients. There was this one woman who a minute after being injected with something, began to cry hysterically. As soon as the tech injected her with anti histimine she just calmed down. Wow, what a reaction! The poor woman was stunned herself. If I remember correctly you couldn't have more than a certain amount of allergens injected to you per day because it would over do your system.
After several days and no significant reactions to anything I was injected with, the doctor called me in saying that some of my test results were back. The only really significant thing I remember was that they had found some kind of pesticide in my body that was supposedly not being used here in the U.S. anymore since I was a baby. The only thing we could think of is that it was from the Basmati rice that we Persians eat all the time. The rice is brought in from India and Pakistan and they use different pesticides than we do here. Also, he found something weird in my intestines that he said he would order a vaccine for but that would take several months. So we decided to leave and make an appt for when he said the vaccine would be in (in a few months)
Unfortunately (which seems to be my middle name) when we came back, they told us the vaccine had not arrived yet. But to do further skin testing since I had spent so much money on plane tickets and hotel already. On the 2nd day of skin testing, I got really really sick. The tech really over did the skin testing . An hour later I was sweating, hot, dizzy and about ready to pass out. I had an appt w/ the doctor, but he didn't show up. I began to throw up and found I had a really high fever. I attributed it to the over testing. It was worse than any flu that I had ever had. It was Friday afternoon so they couldn't see me the next day. My husband decided that we should just drive down to Houston to where he has aunts and uncles. My fever and sickness got so bad that my husband's uncle was insisting I go to the ER. I had such bad experiences there that I refused.
Anyway, the sickness lasted for a week and we had no choice but to go back home. They actually billed us for all the things we didn't get to do cause I got sick and didn't even acknowledge that I may have gotten sick because of too many allergens being put in my body. I called for that vaccine, they told me that I would have to go back because they couldn't find what I was talking about over the phone. So that meant we had to spend a ton of money to fly back from California to Texas to tell the doctor to reorder the vaccine then go home and wait to be told the vaccine was there and then fly to them again???? We weren't made of money. We never went back. Though I really would have liked to try that vaccine. If nothing else, it may have cured my IBS and I wouldn't have to go through all that.
I had a really good gastroenterologist from UCSF by the name of Dr. Aron, before I switched to stupid old Kaiser. He believed opposite of most fibro specialists, that fibromyalgia results from IBS or other small intestine problems. A lot of people may not know that the small intestine is our main immune system.
I agree with Dr. Aron. I have had digestive problems since I was 15 years old. It has made my life miserable before the fibro ever did.
4 comments:
Please go to Walgreens website and sign up for the wellness newsletter. August had a fantastic article on "Fibromyalgia", I hope that you do your best to find this article even if you go to the Pharmacy and ask how to get the article or contact Walgreens on their website. I live in Houston area and have a Neurologist, Rheumatologist and they are fantastic. Fibromyalgia is an illusive illness with many side effects. Sorry to hear you are having problems. Some of these clinics are a bunch of junk science. Stress will increase your problem and IBS is part of Fibromyalgia. You will have to learn to avoid certain foods. I can be found on Facebook.
Hi Foggy, Great article. What a shame they couldn't get their customer service together. It's tough dealing with the big guns at times. I really admire you for going to that extent, seems such a shame to have had it fall flat. Have you tried writing a letter to them about it? I'm not sure letters have much impact these days, but well I guess you never know. I also really like the way you write.
What a story you have. Have you tried a yeast cleanse? If you have gas, indigestion, heartburn, bloating, bleching, etc. it can be an overgrowth of yeast in the large intestine. Have you been tested for Lyme? Low thyroid? Fibro and CFS can have so many variables.
Sorry about your experience in Dallas. Personally know people who have had good responses there. Hope by now that you have been tested for celiac disease. Not ALL gastro,s are knowledgeable re: type tests, kits, etc. Having negative tests results does not preclude future positive tests. Going gluten free without being adequately tested is not recommened & can be harmful. I was originally misdiagnosed with IBS, which turns out to be Celiac & has wreaked havoc with health & purse. All health issues started to improve after some villae healing started after being gluten free for about18-24 mos.Still have issues that will probably never resolve because of mis 7 delayed diagnosis. Best wishes on your health journey.
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