In Reply to: Re: aplastic anemia posted by Walt Stoll on December 09, 1997 at 13:12:18:
Dear Cynthia or Dr. Stoll I find it very interesting and odd twins have aplastic anemia. Don't you? Also what do counts of 115 and 102 mean? when I have a cbc my hgb ct. is 9.2 or 7.4. My reciculite ct. is 65000 right now this is a very important count to me. It is number of new blood cells (or somthing like that) that only my lill' ol bone marrow can make. I don't know if it's me or the cyclosporine I am taking.For now I guess I just go day by day and cbc by cbc test. I don't know if any one will read this. I would like any follow ups or feed back on Dr. Stoll's site or email me at baechert@indy.net Thank You Tamra
In Reply to: aplastic anemia posted by Charlene Woodward on September 10, 1997 at 12:52:40:
Ms. Woodward,
I am a 26 year old college student with aplastic anemia. I have had this diagnosis for almost six years. I take cyclosporine with nothing else and I respond well to it. The necessary dosage for maintenance of acceptable counts has been reduced over the years. You have only had one transfusion? Have you doctors considered cyclo?
Also, it's a bad situation to have this disorder, but it is nice to hear about someone who can relate. Write me if you have comments, questions, or expressions of concern.
In Reply to: Re: aplastic anemia posted by Tamra Baecher on January 09, 1998 at 00:14:39:
Dear Tamara,
The time is long gone when the poor patient has to just wait to get worse (by "watching" counts) before the waiting doc finally takes action. As you should know, no one even considers that your present treatment is anyhting more than a delaying action.
It is now well estblished that aplastic anemia is at least partially caused by environmental pollutants to which the individual has become hypersensitive. For "specialists" in the diagnosis & treatment of aplastic anemia to continue to pretend, that no body knows that at least some of the causes are known, is no longer acceptable behavior!
You need to at least be seen by a good Clinical Ecologist in your area to get a "second opinion". Be sure to take all of your clinical records (copies of which I am sure you have in your home where they should be) with you for the consultation in order to save lots of time & money.
Call the American Academy of Environmental Medicine, Box #16106, Denver, CO 80216 for the closest certified CE to you. When you get their phone #, please share it with the rest of us here on the BB.
As you get well, please share your experiences with the rest of us. This used to be an incredibly rare condition (30 years ago) & now it is common. Who believes that the human race is evolving at such a pace? Of course it is NOT. It is the rapidly increasing levels, & numbers, of toxic chemicals in the environment. The incidence of aplastic anemia parallels perfectly the environmental exposure. Not only that, the only effective way to reverse it, so far, is discovering which toxins can be identified & eliminated or detoxified.
In the meantime, improving your own immune system is also a very effective way to keep from getting worse while some of the causes can be removed. AIDS research has shown MANY ways that an individual can do that.
The only reason you have not been told that already is that we MDs have carefully kept insurance companies from paying for education so that only prescription-writing practitioners can participate in the monopoly. Most health promotion activities can be taught by ANYONE. That puts them in the catagory of "competition" to we MDs who haven't a clue as to how to resolve THIS problem.
Walt
In Reply to: Re: aplastic anemia posted by Eric Mckee on January 09, 1998 at 12:45:32:
Dear Eric,
If you are ready to learn how to beat this thing, read the other responses I have on the BB today.
Walt
Dr. Stoll,
My 17 month old son was diagnosed with severe aplastic anemia 4 days ago. We are working diligently to learn as much as we can about this disorder. He has already received 2 platelet trasfusions and 1 red blood cell transfusion. We expect him to receive another platlet transfusion tomorrow... We are located in Northern Virginia (Fairfax County...Washington DC metropolitan area). I am having difficulty locating a specialist (or expert in this field) that deals with infants. I spoke to Dr. Neil Young who said that he does not treat anyone under the age of 2 years... but that this disorder, while not common was more common in adults than in children. Our Hematologist is currently running HLA testing on my 4 month old daughter's blood to determine if she is a candidate for a bone marrow transplant.... I am concerned about the effects this may have on her fragile system.... Can you recommend a source in this area that I can use to verify my Dr.'s credentials and/or locate an expert in dealing with pediatric cases of aplastic anemia???
Thanks Much, the clock is ticking... Jodie
In Reply to: aplastic anemia in an infant posted by Jodie Bonett on January 12, 1998 at 16:10:10:
Dear Jodie,
The reason why older people get AA is that it takes years for the environmental toxins to build up to overwhelm most people's resistance. There is a bell curve of resistance & your child has been unfortunate enough to be born at the bottom of that curve.
Those physicians who do not understand that nearly ALL AA is due to environmental chemical sensitivity should be doing something else for a living! Certainly you are wasting your time paying them for help.
If I had your child, I would be seeing the closest Clinical Ecologist I could find. This might only be the beginning of the necessary journey but at least you will be on the map.
Call the American Academy of Environmental Medicine, Box #16106, Denver, CO 80216. Tell them the problem & get the closest expert in that area. When you get their voice & FAX # please share them with the rest of us.
Let us know what happens.
Walt
In Reply to: Re: aplastic anemia posted by Walt Stoll on September 11, 1997 at 10:00:43:
My father was diagnosed 8 months ago. He is 66 years old, Filipino. No known cause has been determined. He did go through some, not much radiotion therapy with the removal of his prostate from early prostate cancer in 1994. The cancer did not metastasize. He continues to receive blood transfusions every 3 weeks. He had also travelled to the Philippines 3 weeks before he was diagnosed. Can you give me any information on this disease? His doctors told us that there is no research on this subject. Thank you.
In Reply to: Re: myelodysplasia posted by Susan Mitchell on January 18, 1998 at 01:18:32:
Dear Susan,
Perhaps HIS docs have not read any of the research. That is a far cry from saying that there is no research.
Use the search feature provided with this BB & read everything about aplastic anemia you can find.
THEN, if you have more questions, write again.
Walt
In Reply to: Re: aplastic anemia posted by Walt Stoll on September 11, 1997 at 10:00:43:
My wife has multiple myeloma. She had a bone marrow transplant with radiation and chemo about 1 1/2 years ago. She has now been diagnosed w/myelodisplatic syndrome. We are searching for good ways of treating this - both doctors, medications, alternative cures or anything.
In Reply to: Re: myelodisplasia posted by Dick Doty on January 22, 1998 at 07:51:49:
Dear Dick,
The fact that your wife's disgnosis has progressed from multiple myeloma TO myelodysplastic syndrome should tell you something; since both have been linked directly to multiple chemical sensitivity. I have been discussing this concept for years on the internet.
They are related to aplastic anemia & that subject has been discussed many times right here on this BB. Use the search feature & read everything you can find about AA. THEN, if you still have more questions, write again.
Once you get on the right track, share her experiences, as she gets well, with the BB participants. These conditions used to be (40 years ago when I first started my medical training) extremely rare. NOW, they are becomming common. Has the human species evolved so quickly or is there an obvious cause that is not being addressed?
Walt
In Reply to: Re: myelodisplasia posted by Dick Doty on January 22, 1998 at 07:51:49:
Dear Dick,
The fact that your wife's diagnosis has progressed from multiple myeloma TO myelodysplastic syndrome should tell you something; since both have been linked directly to multiple chemical sensitivity. I have been discussing this concept for years on the internet.
They are related to aplastic anemia & that subject has been discussed many times right here on this BB. Use the search feature & read everything you can find about AA. THEN, if you still have more questions, write again.
Once you get on the right track, share her experiences, as she gets well, with the BB participants. These conditions used to be (40 years ago when I first started my medical training) extremely rare. NOW, they are becomming common. Has the human species evolved so quickly or is there an obvious cause that is not being addressed?
Walt
In Reply to: Re: aplastic anemia posted by Cynthia on November 24, 1997 at 13:34:03:
Two twins with aplastic anemia. That sounds like
Fanconi's anemia. Its inherited. Sometimes theres not
many of the usual signs of this. There is a women Dr.
from Texas who specializes in children and also inherited
forms of aplastic anemia. Contact the aplastic anemia
foundation. I can't remember her name but she spoke at
the 1996 convention. She wrote the text book with Dr
Neil Young on Anemia.
In Reply to: Re: aplastic anemia posted by mary on January 27, 1998 at 23:32:48:
Dear Mary,
AA is never inherited. The susceptibility to AA IS inherited. It still takes an environmental trigger to set it off.
It could even be that these people, on the bottom end of the bell curve, might have to live inside a plastic bubble to avoid the environmental toxins that destroy the blood forming tissues of the body--a hell of a way to live. However, this has "worked" for the "bubble baby" who has a genetic SUSCEPTIBILITY to infectious agents.
IT IS IMPORTANT FOR PEOPLE (especially the researchers) TO STOP LOOKING AT THIS IN SUCH A SIMPLISTIC WAY!!!!!!
Walt
In Reply to: Re: aplastic anemia posted by Walt Stoll on January 29, 1998 at 12:47:44:
After years of suffering from a mild form of chronic anemia that the cause could not be diagnosed, I was finally informed after my 7th bone marrow that I could have either aplastic anemia or monoplastic anemia. However I can't find anything on monoplastic anemia. Do you know anything about this. I am awaiting the final results of some test to come back to determine which it is.
Any information would be helpful. Thanks
In Reply to: Re: aplastic anemia posted by Pat on January 29, 1998 at 19:57:21:
Dear Pat,
Monoplastic anemia is just one of the stages along the path to aplastic anemia. The causes are the same. Do you want to catch it earlier or later?
Mono means one. That means that with monoplastic anemia only one kind of cell in the bone marrow has stopped working. Aplastic anemia means that they all have stopped working.
One of the reasons the docs you have been seeing make so much money is that it is their responsibility to explain all this to you NO MATTER HOW MUCH TIME IT TAKES. They are not supposed to just take the money & run--unless you let them.
Walt