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I'm glad you are not my doctor. Anyone to make such a negative statement like you did -- let me repeat -- The only known, conventional, solution is repeated blood transfusions and eventually even that will not help and the person dies. There are medications that will help for awhile but it is really whipping a deadly tired horse. Eventually, they will not work because the horse is dead. --sure is not very PROFESSIONAL. We all know great strides in medical research with treatments are taking place each day. If you were a newly diagnosed Aplastic Anemia patient and would read your commentary HOW WOULD YOU FEEL? Your bedside manner certainly leaves alot to be said. You need a slap from the AMA about your comment. Also, I think an apolgy should come from you. You are WRONG!!! Jo Ann Wuensch diagnosed with MDS-RAEB-T after total replacement surgery Aug. 1998; went to acute leukemia by Jan. 1999; had aggressive chemo treatment Jan/Feb 1999 (40 stay in hospital); remission Mar. 1999 and holding.
In Reply to: Dr. Stoll's Comment About Aplastic Anemia posted by Jo Ann Wuensch on June 09, 2000 at 09:44:28:
Dear Dr. Stoll,
Shame on you! Welcome to 2000! Are you aware that many people are LIVING with Aplastic Anemia? There are several very successful treatments available today. My son, diagnosed in December 1998 is alive and well with near normal blood counts living the normal unrestricted life of a child. Your irresponsible comments could be devastating to someone newly diagnosed. Do your homework!
Wendy, mother to Grant, age 8
dx AA 12.4.98
ATG/cyclo/pred
ALIVE AND WELL!
In Reply to: Re: Dr. Stoll's Comment About Aplastic Anemia posted by Wendy, Mother to Grant, age 8 on June 09, 2000 at 11:37:28:
I find this page to be outragous. You should not have a liscence to practice medicine with the dark aged comments you have made about aplastic anemia, many people have LIVED with the help of current treatments, which include much more then just transfusions. Do your research before making such a ridiculus statement. If you truely are a doctor I would have you reported to the AMA....
Mary
In Reply to: Re: Dr. Stoll's Comment About Aplastic Anemia posted by Wendy, Mother to Grant, age 8 on June 09, 2000 at 11:37:28:
Jo Anne and Wendy,
I hope you BOTH went on to read the rest of Dr. Stoll's comment on this disease where he talks about the causes and how you might be able to reverse this condition. Please be assured that Dr. Stoll's comments are meant to educate people about their conditions and how to deal with those conditions. Surely you realize the gravity of this condition. Dr. Stoll is not known for sugar coating things - he speaks clearly and directly in order to educate people. This discussion board offers support to whomever is willing to help themselves for the most part, but I am not sure it was intended to be a "support group."
Good luck to you both,
trish
Here is the rest of his summary:
"It is now known that the most common cause of this condition is MCS (Multiple Chemical Sensitivities) and how early
in life this happens is genetically determined.
When I first entered practice, nearly 40 years ago, aplastic anemia was almost unknown. In 30+ years of practice I
never saw a case. However, now it is almost an epidemic. This is NOT a case of sudden evolution of mankind but a
result of the tremendous increase of invented chemicals we are all exposed to every day.
Only the identification and elimination of (see Multiple Chemical Sensitivities archive)
those chemicals (even foods) from the hypothalamic burden OR improving wellness (thereby increasing the horsepower
the person still has to deal with them)-- see Wellness archive--or the glossary, will do reverse this condition. One would
need a good Clinical Ecologist to help with that. See the glossary for C.E. explanation AND for how to find the closest
one to you."
In Reply to: Dr. Stoll's Comment About Aplastic Anemia posted by Jo Ann Wuensch on June 09, 2000 at 09:44:28:
I too cannot belive the statements you have made. What kind of Dr. are you? Don't you know one of the most important jobs as a Dr. is to keep the patients HOPE alive? Saying we'll give you some blood and then you'll die. Oh thats a lot of hope. Maybe you should take some time and review the MDS/AA support list. There are some that have lived many years with the disease and many that have been in remission. Oh sure there are many sad cases of people fighting and losing. But thankfully for Drs. like at M.D. Anderson in Houston they will find away to destroy this disease. Closed minded Drs. like you will only succeed in killing his patients.
Kathy
In Reply to: Dr. Stoll's Comment About Aplastic Anemia posted by Jo Ann Wuensch on June 09, 2000 at 09:44:28:
Please remove your inaccurate information from this site. Not only is it completely out of date, but most of your data is false. For those patients who truly need information about aplastic anemaia, I urge you to look elsewhere! The first place to look should be at the AA-MDS website found at
www.aafa-ner.org/aa-mds
Sincerely,
Kim, mom to Zak, dx SAA 6/97, treated unsuccessfully twice with ATG, unrelated donor Bone Marrow Transplant 9/98 - and who is very currently a very healthy and active 12 year old!
In Reply to: Dr. Stoll's Comment About Aplastic Anemia posted by Jo Ann Wuensch on June 09, 2000 at 09:44:28:
Now this is interesting. having been diagnosed with MCS but
also Combined System Disease seems more the problem after my
really bad reaction to chemicals i was exposed to one time
and B-12 and Folic acid were low which causes CSD. I believe
my liver and kidneys were affected since things they
regulate were off or a problem. Things that helped function
a lot were zinc and niacin after the B-12 and folate didn't
help anymore. Now MSM is really geting me doing things and
each brand seems to help something different.
I had Extremem food and chemical sensitivities with
incredable stabbing headaches and Oatmeal of all things
got rid of them and for good in a short time and they used
to last for days before finding that. My system had gone
acid and i was loosing my central vision till i happened to
get a rare case of heartburn and took bicarb and it came right back so
I put bicarb on any acid foods i wanted to eat so my body
didn't tingle
VF
In Reply to: Dr. Stoll's Comment About Aplastic Anemia posted by Jo Ann Wuensch on June 09, 2000 at 09:44:28:
Jo Ann,
You must not have read the archives about AA OR read the offensive note very well. If this were not such a serious condition (becoming much more common every day & why do you think that is?) it would be amusing to see the knee jerk responses to anyone suggesting any other approach than the basically ineffective one presently being touted by conventionakl physicians as the only possible way to think.
The causes of AA are only unknown until someone figures out the causes. In genetically susceptible people, environmental chemicals are the major cause of AA. What possible harm can accrue for someone to at least look into that with a Certified Clinical Ecologist while they are being treated conventionally???
Walt
In Reply to: Re: Dr. Stoll's Comment About Aplastic Anemia posted by Wendy, Mother to Grant, age 8 on June 09, 2000 at 11:37:28:
Wandy, mother to Grant.
It is time for you to do your own homework.
See the note I posted today about this.
Walt
In Reply to: Re: Dr. Stoll's Comment About Aplastic Anemia posted by Mary on June 09, 2000 at 12:13:19:
Mary,
Are you aware of the actual statistics as to the long term survival of AA? Are you aware that the current conventional treatment has NOTHING to do with the cause?
What possible harm can there be for anyone to seek the consultation of a Certified Clinical Ecologist while continuing the conventional treatment???
Methinks thou protesteth too much.
Walt
In Reply to: How about the REST of Dr. Stoll's Comment About Aplastic Anemia posted by trish on June 09, 2000 at 13:43:17:
Thanks, trish!
It is amazing how people with incurable conditions get all up in arms when someone suggests that the docs they are depending on for their lives are not up on the latest developments. The Human Genome Project results are going to have to come up and bite those docs on the butt to get them to break their paradigm.
Waolt
In Reply to: Dr. Stoll's Comment About Aplastic Anemia posted by Jo Ann Wuensch on June 09, 2000 at 09:44:28:
Dr. Stoll:
I have the following input and questions relating to your posting on aplastic anemia. I have included your text for reference and annotated it with my input or questions.
This type of anemia [aplastic anemia] is, perhaps, the most severe one can have since it is caused by a shutdown of the person's ability to MAKE blood cells. That means that, even if all the nutrients are present, the factory cannot make them into cells. [The conclusion of paragraph is basically accurate; however, the paragraph may lead the untrained reader to assume that aplastic anemia deals only with the RBC line and not the WBC and platelet lines.]
The only known, conventional, solution is repeated blood transfusions and eventually even that will not help and the person dies. There are medications that will help for a while but it is really whipping a deadly tired horse. Eventually, they will not work because the horse is dead. [This paragraph indicates that you have a basic lack of understanding of the current treatments for AA; the equine references are beneath contempt. Current treatments for AA include protocols using, either alone or in combinations, cyclosporine (CSA), antithymocyte globulin (ATG), prednisone, cytoxan (cyclophosphamide), traditional bone marrow transplant, mini bone marrow transplants (nonmyeloablative), and several other protocols that are on the cutting edge of medical technology related to AA.]
It is now known that the most common cause of this condition is MCS (Multiple Chemical Sensitivities) and how early in life this happens is genetically determined. [I have never seen any published material supporting your comments; however, this does not mean that it does not exist. Would you please post citations to the published reference material that supports this paragraph as it relates to AA?]
When I first entered practice, nearly 40 years ago, aplastic anemia was almost unknown. In 30+ years of practice I never saw a case. However, now it is almost an epidemic. This is NOT a case of sudden evolution of mankind but a result of the tremendous increase of invented chemicals we are all exposed to every day. [How many cases of AA have you treated to-date? What protocols have you used and what were the 1, 3, 5 and 10 year morbidity rates based on your treatments?]
Only the identification and elimination of (see Multiple Chemical Sensitivities archive)
those chemicals (even foods) from the hypothalamic burden OR improving wellness (thereby increasing the horsepower the person still has to deal with them)-- see Wellness archive--or the glossary, will do reverse this condition. One would need a good Clinical Ecologist to help with that. See the glossary for C.E. explanation AND for how to find the closest one to you. [No comment pending posting of research supporting your position.]
Of course, doing both would help the most. [No comment pending posting of research supporting your position.]
In Reply to: Re: Dr. Stoll's Comment About Aplastic Anemia posted by Kevin Holder on June 10, 2000 at 21:08:57:
Hi, Kevin.
I appreciate your thoughtful note.
The purpose of this BB is to open doors for people seeking information---NOT to do the research for them.
I have done the literature research over the past 25 years and have at least convinced myself that it is a valid avenue of inquiry for those with the problem.
Contact the Clinical Ecology organization and find out for yourself. Those who choose to find out now have the tools to start their journey. Those who decide to ignore this open door will eventually have to learn it all later. Hopefully, they will still be alive to do it.
I hope you will take the time to share what you learn with the rest of the BB.
Walt
In Reply to: Dr. Stoll's Comment About Aplastic Anemia posted by Jo Ann Wuensch on June 09, 2000 at 09:44:28:
Hey Doc, as if I should call you that? Why in Gods name would you make a comment like that? I can only imagine you are old and tired of your profession. I have been fighting this disorder(AA) for nearly two years now and I am thankful that I have survived this long. No longer working but still stay active. Last summer I was able to ride bike for 60 miles,I continue to make progress to this day. True there is no known cure for this disorder but half the battle against it is HOPE!! May you never or any of your family ever fall ill with such a rotten illness. There are people who have survived and are going on with life. There are Doctors who have come up with certain ways to battle this disorder, thank God for them. AA is so rare that maybe you do not know to much about it. Maybe you should research it more. As for your comment on it,you`ve only made me want to drive on more. Perhaps thats why you made those remarks. Well doc? , thank-you for giving me another reason to survive to prove you wrong. See I have other reasons too. Married to a wonderful woman which I have two precious little girls with. Thanks again doc, and I use the term very loosely. Take care and God bless. Fred L Fal Jr.
In Reply to: Re: Dr. Stoll's Comment About Aplastic Anemia posted by Walt Stoll on June 10, 2000 at 08:11:34:
Johns Hopkins treatment with cytoxan in the theory that AA is an auto-immune disease has resulted in everyone treated so far being successfully restoring their own systems to producing their own blood and living totally transfusion free. There is treatment that is working.
There is no doubt our environment that we are creating is somehow causing this but seems very varied and hard to track as individuals. HOw do you report it to an ecologist that would compile the data from all of us?
In Reply to: Re: Dr. Stoll's Comment About Aplastic Anemia posted by Madelyn on June 14, 2000 at 21:40:51:
Ni, Madelyn.
I appreciate the information about Johns Hopkins success. I will be interested in their 10 year success.
All that I have read about the successes in learning about the environmental causes of this condition tells me that it is impossible for their approach to be more than a temporary benefit.
So far as your last question is concerned: the specialty of Clinical Ecology is the one who can answer it.
Get the February issue of the Functional Medicine Update service to get an inkling of the genetic/molecular mechanisms of this problem. Call (800) 843-9660.
Let us know what you learn.
Walt
In Reply to: Re: Dr. Stoll's Comment About Aplastic Anemia posted by Walt Stoll on June 15, 2000 at 08:35:37:
There has been success over 10 years with the cytoxan treatment at Johns Hopkins. There are a couple people out over 22 years and several out over 12 years. All living normal lives.
In Reply to: Re: Dr. Stoll's Comment About Aplastic Anemia posted by Julia on June 15, 2000 at 17:24:11:
Hi, Julia.
Are you seriously suggesting that Aplastic Anemia is a cytoxan deficiency disease (One of the most poisonous substances known to man?)
When you take the time to look into what is known about the genetic susceptibility related to this condition, and the environmental chemicals that take advantage of this susceptibility, you are going to be embarassed for letting someone else do your thinking.
Walt
In Reply to: Dr. Stoll's Comment About Aplastic Anemia posted by Jo Ann Wuensch on June 09, 2000 at 09:44:28:
My MDS(RARS) diagnosis came from a doctor like you. He told me I was an unlikely candidate for a bone marrow transplant. He told me that I probably wouldn't want to try chemotherapy or trials. Then he turned me over to his nursing staff. I accepted that I was not going to be cured. He had me nearly convinced not to even try to improve my condition. When my white cell started dropping rapidly, no one said a word. That's when I realized that I was on my own with this. My doctor wasn't even going to monitor my demise. I have since learned that a medication, neupogen, might help raise my white count. He didn't even offer this simple medication. I am making an appointment at one of the centers of excellence and will be under the care of doctors who understand this disease and who care. I am now interested in fighting this. No one....NO ONE....should ever just be written off. We are intelligent people. We need the honest facts so that we can choose from our options, and we don't need or want candy-coatings. But, don't tell us we shouldn't try. If I tire of fighting this disease, it will be my choice not some impersonal SOB who won't even look me in the eye.
Barbara Hendricks
In Reply to: Re: Dr. Stoll's Comment About Aplastic Anemia posted by Barbara Hendricks on June 17, 2000 at 04:04:14:
Barbara,
It's very obvious that you have NOT read what Dr. Stoll wrote. He has never told anyone not to try to get well. Never.
All you folks came on this board after Jo Ann misconstrued what he was saying and everyone went off on it without bothering to read for themselves...with all due respect, that's not very fair - or intelligent. Why don't you read a little bit of the archives here on your condition?
You are right NO ONE should be written off - so how about giving Dr. Stoll a chance, NOT writing him off, and READING what is available to you here?????
trish
In Reply to: Re: Dr. Stoll's Comment About Aplastic Anemia posted by trish on June 18, 2000 at 17:57:56:
Hello,
Walt, am I the only one who understands what you were trying to say? Maybe you should rephrase your description, since people don't seem to get past the dead horse thing - I took it to mean that their tired systems were being worn out by the drugs. Everyone seems to think you're refering to the patient as the horse.
Just a thought...
hope you are feeling fine!
trish
In Reply to: Walt, I have a question/suggestion... posted by trish on June 18, 2000 at 18:01:59:
Thanks, trish!
As you know, the "dead horse" is the bone marrow. In MY experience, those who go off half cocked cannot be helped at this level---no matter how hard one tries to spoon feed them the facts.
These people are dealing with a very serious problem that is frequently fatal and STILL they cannot take the time to learn something new---even though it would not interfere with their conventional treatment at all.
Walt
In Reply to: Re: Dr. Stoll's Comment About Aplastic Anemia posted by Kim on June 09, 2000 at 18:47:49:
Thank you Kim for your response. My 11 year old has been diagnosed with Fanconi anemia and has begun treatment. Dr. Stoll's comments would make a person give up all hope for my'son's future.
In Reply to: Re: Dr. Stoll's Comment About Aplastic Anemia posted by Susan on June 25, 2000 at 22:28:07:
Susan:
I'm sorry to hear your discouraging interpretation of and reaction to what Dr. Stoll shared earlier. Yes, he is blunt, to the point, and holds no punches. He figures that people who are desparate enough with their chronic illness to come here with their questions want as straight a story as possible, not to have it sugar-coated.
All that is here is offered freely to whoever may come and visit and read a bit and ask a few questions. What you do with what you find here is completely up to you. The same with your reaction to Dr. Stoll. It's up to you to choose your reaction, and what you do next.
Even more importantly, when you are with our son's doctor, the next time and at times after that, do be sure to ask about the treatment that is being recommended/given. Since you want the very best possible care for your son, and the best possible long-term outcome, it's important for you to understand what can and is being done to treat the symptoms (treating symptoms useful as long as the side-effects are not worse than the original problem!) and what can and is being done to cure the underlying reason (cause) for the disease.
My guess is that unless you are very fortunate in your selection of doctors, your son's doctor will likely be able to only treat his symptoms, and will have no clue whatsoever how to address the underlying causes. In fact, likely it would be against his financial best interests to address the underlying causes. Typically insurance companies don't pay for patient education. This way (treating the symptoms only, and hoping that the disease will go away on its own) your son will be back at the Dr's. office many times over many years for checkups, treatments, and at the very least to get prescriptions refilled. With patient education, you would be there at most a few times and never need to return. Where's the profit in that for the Dr? Do think about it, not only in this instance, but in general.
Sadly, if the doctor you choose only treats the symptoms, then what you read Dr. Stoll "say" may in fact eventually come to pass. But that's not what you want and it's not necessary. It's up to you to either find a doctor who CAN treat the underlying causes, or else to use your current doctor just for symptoms treatment and monitoring of progress of the disease, learn for yourself what to do about the underlying causes, and make that happen in any way you must. It's your choice.
So after your initial anger subsides, I'm hoping that you will come out of here with much more than you realized and more than you even hoped to find.
This web site is about dealing with underlying causes of diseases with things like wellness. Check it out! It's your choice and your life.
Hope this helps!
RHJ++
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