Post by bb on Aug 7, 2005 14:28:04 GMT -5
because they have been in the same boat we are in today, no one would help them, and no one know anything about their disease.
*same as the letter to NIAMS except the first paragraph and the closing sentence
August 6, 2005
amfAR (American Foundation for AIDS Research)
1828 L Street, N.W., #802
Washington, D.C. 20036-5104
Dear Sir/Madam:
I am writing because thousands of Americans are finding themselves in a situation that AIDS patients faced some years ago. I am writing in hopes that your organization can lead us. Somehow the AIDS society found a way through the maze to at least get recognition for the disease. We have a condition that doctors are diagnosing as dillusional, but we know better. We suffer immensely, with little or no medical care. Our condition is being called Morgellons. There is a website I beg you to check out. It is morgellons.org.
People with Morgellons are desperately seeking help elsewhere and everywhere, because the medical community has turned their backs to us. Morgellons has been in the news often lately, but it's like no one is hearing what we are saying because it's just too sci-fi. When Morgellons hits the news I thought it would be big news, huge. But it was barely a bleep on the screen. No one can believe it if the doctors don't.
Thousands of people in America are coming down with this new, undiagnosed disease. We all share the same symptoms of intense itching, skin nodules, feeling like bugs are biting and crawling around in or on our skin. We suffer many physical symptoms like fatigue, brain-fog, anorexia, cough, and many more. Most people with these symptoms have skin lesions that are very difficult to heal.
The problem really begins when we seek help from our family doctor. After several visits you figure out he/she is not going to help you. Then the suicidal thoughts set in. You feel you have to end your life to stop the torture that is 24/7. People are killing themselves. The torture is too much, and the hopelessness is caused by the lack of our doctor's concern. If you manage to pull through the initial suicidal stage, then you go on to see other doctors, and more doctors, until you are broke and still haven't received one bit of help. Not one of seven doctors have done so much as a skin scraping for me. I have begged for referrals, but I all I got was an appointment with a shrink, as many of us sufferers have.
We are living in daily hell-on-earth. Worse than that, it intensifies at night. Sleep is impossible without medication. Most of us have lost our jobs. Most of us cannot drive. Most of us are extremely ill. There are whole families that have it. My heart goes out to the children whose little lives have been destroyed by this scourge. They have to rely solely on their parents to pull them through, when the parents don't know the first thing to do. We are all trying to figure out what works, what products on our skin, or what taken orally to kill internal parasites will help. We desperately self-medicate without much success.
Ginger Savely, a Nurse Practioner in Austin, Texas, is finding some 10% of her Lyme Disease patients have this condition that is being called Morgellons. No one knows what the connection is, but she is trying to help us. The last I heard she had some 36 patients with Morgellons, all tested positive for Lyme except one.
She also told me that Lyme is the new imitator. Anyone diagnosed with MS, or Lupus, or Fibermyalgia should be tested for Lyme. The rest of that story is that it is hard to get an accurate test for Lyme due to the government guidelines being ridiculous and outdated. Also, many doctors "don't believe" Lyme is in their part of the woods. Excuse me, that is just a stupid statement. How can an educated person be so dumb.
I strongly suspect that the medical profession is being run strictly as a business. The almighty dollar is the bottom line. Our health comes dead last. How can it be possible that people all across America are going to doctors with these symptoms and all getting the same diagnosis that we are either mentally ill, or it's just scabies, or it's absolutely NOTHING! They can see physical evidence of the person's unhealthy skin, the person is unhealthy in general, but they pronounce you fine. What's going on here? Even when you send them information ahead of your appointment, they will still see you, take your money, and then do nothing to help you. After 11 months of research, I have come to the conclusion that parasites are making us all ill and making doctors rich. They know this. It is their big secret.
Even the CDC has turned their backs to us. They send form letters in reply to our requests for help. They finally conceeded enough to say they would accept samples. How can anyone know how to collect samples of a mysterious scourge? Samples sent in thus far have been disregarded as nothing. We need top-notch, professional, government help to unravel this mystery.
We have been told to find researchers interested in our plight. That is a daunting task for anyone. Why is it that sick people in America are expected to climb a mountain of beauracracy to find help? It is as if we are domed for defeat before we even begin the monumental task. It is as if our defeat has actually been carefully planned and orchestrated. The more our condition is ignored, the more money is taken from us by the medical community as we desperately seek help in vain. Each doctor visit leaves a person feeling more humiliated. How can the medical profession be so blatently ignorant? Do they really think we are that dumb, to believe this is nothing when the symptoms speak volumes? How can we believe them when we are talking to many others on the internet with the same symptoms? Most of all, how can we take on this huge battle alone? America needs to develop a plan for dealing with new diseases that doesn't leave an extremely sick person to fend for themselves.
Is there anything you can advice us to do? Without help and hope, the suicides will continue.
thank you,
Becky Bailey
beckybailey2892@hotmail.com
*same as the letter to NIAMS except the first paragraph and the closing sentence
August 6, 2005
amfAR (American Foundation for AIDS Research)
1828 L Street, N.W., #802
Washington, D.C. 20036-5104
Dear Sir/Madam:
I am writing because thousands of Americans are finding themselves in a situation that AIDS patients faced some years ago. I am writing in hopes that your organization can lead us. Somehow the AIDS society found a way through the maze to at least get recognition for the disease. We have a condition that doctors are diagnosing as dillusional, but we know better. We suffer immensely, with little or no medical care. Our condition is being called Morgellons. There is a website I beg you to check out. It is morgellons.org.
People with Morgellons are desperately seeking help elsewhere and everywhere, because the medical community has turned their backs to us. Morgellons has been in the news often lately, but it's like no one is hearing what we are saying because it's just too sci-fi. When Morgellons hits the news I thought it would be big news, huge. But it was barely a bleep on the screen. No one can believe it if the doctors don't.
Thousands of people in America are coming down with this new, undiagnosed disease. We all share the same symptoms of intense itching, skin nodules, feeling like bugs are biting and crawling around in or on our skin. We suffer many physical symptoms like fatigue, brain-fog, anorexia, cough, and many more. Most people with these symptoms have skin lesions that are very difficult to heal.
The problem really begins when we seek help from our family doctor. After several visits you figure out he/she is not going to help you. Then the suicidal thoughts set in. You feel you have to end your life to stop the torture that is 24/7. People are killing themselves. The torture is too much, and the hopelessness is caused by the lack of our doctor's concern. If you manage to pull through the initial suicidal stage, then you go on to see other doctors, and more doctors, until you are broke and still haven't received one bit of help. Not one of seven doctors have done so much as a skin scraping for me. I have begged for referrals, but I all I got was an appointment with a shrink, as many of us sufferers have.
We are living in daily hell-on-earth. Worse than that, it intensifies at night. Sleep is impossible without medication. Most of us have lost our jobs. Most of us cannot drive. Most of us are extremely ill. There are whole families that have it. My heart goes out to the children whose little lives have been destroyed by this scourge. They have to rely solely on their parents to pull them through, when the parents don't know the first thing to do. We are all trying to figure out what works, what products on our skin, or what taken orally to kill internal parasites will help. We desperately self-medicate without much success.
Ginger Savely, a Nurse Practioner in Austin, Texas, is finding some 10% of her Lyme Disease patients have this condition that is being called Morgellons. No one knows what the connection is, but she is trying to help us. The last I heard she had some 36 patients with Morgellons, all tested positive for Lyme except one.
She also told me that Lyme is the new imitator. Anyone diagnosed with MS, or Lupus, or Fibermyalgia should be tested for Lyme. The rest of that story is that it is hard to get an accurate test for Lyme due to the government guidelines being ridiculous and outdated. Also, many doctors "don't believe" Lyme is in their part of the woods. Excuse me, that is just a stupid statement. How can an educated person be so dumb.
I strongly suspect that the medical profession is being run strictly as a business. The almighty dollar is the bottom line. Our health comes dead last. How can it be possible that people all across America are going to doctors with these symptoms and all getting the same diagnosis that we are either mentally ill, or it's just scabies, or it's absolutely NOTHING! They can see physical evidence of the person's unhealthy skin, the person is unhealthy in general, but they pronounce you fine. What's going on here? Even when you send them information ahead of your appointment, they will still see you, take your money, and then do nothing to help you. After 11 months of research, I have come to the conclusion that parasites are making us all ill and making doctors rich. They know this. It is their big secret.
Even the CDC has turned their backs to us. They send form letters in reply to our requests for help. They finally conceeded enough to say they would accept samples. How can anyone know how to collect samples of a mysterious scourge? Samples sent in thus far have been disregarded as nothing. We need top-notch, professional, government help to unravel this mystery.
We have been told to find researchers interested in our plight. That is a daunting task for anyone. Why is it that sick people in America are expected to climb a mountain of beauracracy to find help? It is as if we are domed for defeat before we even begin the monumental task. It is as if our defeat has actually been carefully planned and orchestrated. The more our condition is ignored, the more money is taken from us by the medical community as we desperately seek help in vain. Each doctor visit leaves a person feeling more humiliated. How can the medical profession be so blatently ignorant? Do they really think we are that dumb, to believe this is nothing when the symptoms speak volumes? How can we believe them when we are talking to many others on the internet with the same symptoms? Most of all, how can we take on this huge battle alone? America needs to develop a plan for dealing with new diseases that doesn't leave an extremely sick person to fend for themselves.
Is there anything you can advice us to do? Without help and hope, the suicides will continue.
thank you,
Becky Bailey
beckybailey2892@hotmail.com