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Post by psychologist on Jun 5, 2006 0:30:21 GMT -5
Dear Healthcare Provider,
As a psychologist I think it is imperative to warn you that practicing psychology without a license is a crime in the United States of America.
Could Mari, London, Skytroll, Tonie, Freaky, Questionhair and others who have been so generous with their time and thoughtful replies (Carrie, all others) possibly tell me how the above works as one sentence in a psychologist's letter to other healthcare providers? I need to know what you think of it as a letter you can use. Thank You, Psychologist
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Post by psychologist on Jun 5, 2006 0:36:23 GMT -5
Does anything about glitter sound familiar? If yes, please take time to post a reply. Psychologist John, Bare with me for one more. Did you ever at any time notice glitter particles and black specks? Guest
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Post by psychologist on Jun 5, 2006 10:01:55 GMT -5
To Mari who has put in many hours of research:
If any funding comes through you are certainly deserving. In spite of your own serious health problems you have continued to contribute long hours of research. You and Sky and others have striven mightily to answer the question, "What could have caused this?"
I continue to maintain that the answer lies not in either or but in both and. Mari I want to take this opportunity to acknowledge your research contribution, particularly in the area of West Nile Virus.
Very Respectfully, Psychologist
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Post by psychologist on Jun 7, 2006 1:12:08 GMT -5
Skytroll, I hope to include at least a chapter on your research when we get this book into the hands of the public. You have carefully investigated what infectious agent or combination of pathogenic agents could account for signs and symptoms reported, observed and recorded. This collection of work which you and others who search for accurate diagnosis have amassed will prove valuable beyond the problem currently at hand. Very Respectfully, Psychologist
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Post by psychologist on Jun 7, 2006 1:20:29 GMT -5
Catholic4Life, Spinose ear tick and some of the things that are now currently available with just a google search are very important to those who are so sick they are not able to get through one day with even a minimal level of necessary functioning. The question is what do we have to do to get doctors to stop this shameful denial of medical care?
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Post by psychologist on Jun 7, 2006 1:27:03 GMT -5
If physicians in certain states insist they do not have lyme and other tick borne disease they had better inform robins, other migrating birds that carry ticks and nymphal stage ticks that they cannot enter a no fly zone.
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Post by psychologist on Jun 8, 2006 8:51:47 GMT -5
Dear Dr. Wymore,
I am addressing this draft of a request for funding of clinical trials, laboratory research and a centralized facility for our work to you in open letter form for a number of reasons. Primarily it is an excellent podium for engaging others in work toward a public health approach from the scientist practitioner model. I will be happy to discuss privately the many ancillary reasons for availing myself of the public forum afforded by this avenue of free speech through those responsible for this message board.
Psychologists are trained to listen. We remember that in the now famous Tarasoff ruling involving duty to warn it was decided that the confidential privilege of the patient ends where the public peril begins. It would serve us well to remind our medical colleagues in dealing with patiients' reporting of and seeking diagnosis and treatment for disease of unknown etiology to remember Tarasoff.
When the clinical picture is clouded remember the public health. When newspapers are replete with articles about new bird flu, bioterrorism possibilities, emergent infectious disease, new cases of disease previously believed to be eradicated consider duty to protect. It is not beyond the realm of possibility to caution that every individual case presentation carries the potential to move from the idiographic and become a marker case for the nomothetic.
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Post by psychologist on Jun 8, 2006 14:46:59 GMT -5
While we know that medical doctors who treat late stage, neurosystemic, Lyme disease patients are persecuted, little has been said about psychologists who work with this population. Psychologists who work as clinical researchers from a public health approach with this population are at a particular disadvantage.
This same disadvantage holds for investigation of Morgellons spectrum disorder. Case in point: effort to discuss lesions in no way fitting profile of self-mutilator met with blatant hostility on the part of med doc. Psych doc not able to finsh relating observations before med doc with anger bordering on hysteria interjects, "I don't need a medical lecture from you!"
I had an interest in the work of Hans Selye which began in the early 1970s. In particular I was interested in why the predicted decline in health due to the role of psychoneuroimmunology in the biological effects of stress seemed somehow to meet with resiliency among certain individuals. While some people displayed remarkable resilience for others chronic and severe stress had disastrous and debilitating effects.
Thanks to the generosity of Kerry, Ant, Patti who have graciously allowed me to pursue both a study and writing it up on this board the above themes can be returned to and reworked later for clarity and depth of analysis. In this draft of an open letter for funding, a book documenting research of Lyme, Morgellons and related disease models, and articles for submission to various journals I will presently focus on clinical manifestations and their correlation (or lcak of such) with test data.
A vignette is presented of one patient. In keeping with past and future policy, every effort will be made to protect patient confidentiality as well as extend maximal protection and respect in every manner possible to all patients, all practitioners who have upheld their their ethics code, all human beings. By general consensus not more than basic human decency will be extended to those who were pleased to betray the most rudementary standards of science, practice and ethics.
No special concern for protecting their identity will be extended. They will be treated with respect for their basic human dignity. No violations of their humanity will occur. That is more than many of them extended to needy, suffering patients who desperately sought their help.
Having entered an era where veterinary medicine is state of the art and interesting television programs can be followed to learn about cutting edge science, practice and technological advances in this field it does not appear that medicine for the average American has kept pace.
Throughout the 1960s, 70s, 80s, 90s, I addressed issues of civil and human rights and responsibilities. It did not occur to me that by 2000 my focus would be drawn of necessity to medicine. It appears that once labeled Morgellons, with many concomitant pejoratives piled high in the patient's file, that patient is hard pressed to find medical help even when pathognomic signs are clear and present.
A patient who has attacks which she describes as excruciating and like gall bladder or appendicitis attacks along with many other debilitating neurosystemic signs and symptoms complains that "the regular doctors won't listen." She is careful to exclude me from the category of bad doctors. I am the exception. I am a psych doctor. A good doctor. I listen.
I ask if this has held true in all intances of her contacts with psychologists and medical doctors. "No" she replies, a doctor had carefully read the articles she had printed from medical web sites, paying particular attention to the parts about diagnostic challenge, often not discovered until autopsy, potentially fatal, excruciatingly painful, disfiguring, wasting and debilitating... which she tearfully and pleadingly called to his attention.
While other doctors had refused to listen to her at all, this doctor listened intently, read and asked questions. The imperative that the clinician have a high index of suspicion was not wasted on him. "...and most importantly I think I am alive today because" he listened patiently and repeatedly to her symptoms and history as best she could iterate and recapitulate in her agonizing distress. He lost his license. I want to use his name and commend him and many patients want to publicly endorse him. His permission will first have to be secured.
This patient had horror stories of encounters with psychologists, psychiatrists, dermatologists, infectious disease specialists, even a doctor who held himself out to the public as aparasitologist failed her miserably. "I don't want to waste the precious time when I can walk telling people how sick I am." She has recently confined her medical requests to an open MRI.
"They blamed me for moving when I didn't move. Ikept trying to tell them what it was like---the pain and moving and pounding in my head. It was a closed MRI. They said I must hae been moving my face or something but I did not move. A four minute test repeated three times. They said no when I begged them to try again. They said they can't bill my insurance company. I tried so hard to get the radiologist to give me a copy of the screen moving
Previous "pleading and begging only gets me locked up and then they write more lies about me." Requests for more thorough investigation of headaches, gastrointestinal lesions, "escruciating pain, worse than any pain you could ever imagine" have been for the most part ignored.
"I think it is related to cigarettes but I am so beside myself...I don't know if I should wind my head or scratch my watch! The cigarettes are the last thing I need but the worse it gets the more I smoke and I'm smoking more than ever." For nearly three years this patient has been awakened nightly with what she has now come to describe as some kind of attacks. The pillow is sometimes soaked. Oher times she must rush to the bathroom. She describes a pounding in her head and pain.
"The worst headache I have ever experienced in my life. I have been told to write it down. It is impossible to write or stand or speak coherently. They tell me to write it down." This patient uses her hands and tries to make a motion like what she feels in her head. She has described a "banging, pusating, moving," even kicking sensation consistently for at least two years. Prior to this she had paralysis with sudden onset and apparently spontaneous remission of the left wrist.
A nerve conduction test had revealed nerve damage which the psychiatrists and medical doctor assigned to the psych ward where she had been placed for "faking" chose to ignore the findings. A second study was done of the right upper extremity and her report states than the previously documented reduced action potential is not found. "I told them I was the last person they would commit such an atrocity upon. I told them I would sue if I did not get the nerve conduction study."
This patient brought the reports and it appears that the second report is an effort to negate the findings of the first. It would seem that someone would have at least the scientific curiosity to observe the sudden rise and fall in blood pressure and other signs and symptoms, investigate the double and blurred vision, headaches with sudden onset, violent awakening, contradictory and anomolous test findings over "almost three years of pure, miserable, wretched hell."
Please permit me to reserve this space for constructing open letters. Thank you, Psychologist
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Post by psychologist on Jun 8, 2006 15:34:34 GMT -5
The patient's account:
I just want you to know doctor that most of the people you will ever meet are stupid. I can prove it. Look at my ear. See the blood and the lesions? I have told everyone from the clerk in the grocery store to the doctor in charge of the emergency room that there is something called a spinose ear tick that feeds for years.
I bring in articles and bloody things from my ears and ask them to read for themselves or use a microscope and see if anything about these big bloody things on my washcloths that I put in something and bring to their office might help them to figure out what is wrong with me. Do you think they try to help me? They do not. They just make fun of me and say that is the matchbox sign.
That is not why I say they are stupid. I do believe that people so cruel to make fun of someone who is suffering are really stupid people. That is just my belief doc. I do not think anyone has proven a correlation between cruelty and stupidity. I believe such a correlation exists and I have heard other really intelligent people say the same thing.
I am sure they are stupid because they will not even look at what I tell them is torturing and killing me. How could they be so stupid? Now it is only a matter of time before wat is torturing and killing me makes its way around to them. They are stupid.
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Post by psychologist on Jun 10, 2006 8:29:33 GMT -5
The Patient's account:
I am trying to find Catholic Health Care. I went to a doctor who said he was Catholic after a Jewish doctor, a fundalmentalist Christian, a Hindu and some other doctors all wanted to look so intellingent by agreeing with everyone else that I am mentally ill and saying that tests are not warranted. I asked if there was a Muslim or Catholic doctor and they told me no. So I am looking now for a Catholic Health Care facility.
I have learned enogh about the Catholic Church and the lives of the Saints and sins of omission and commission that I have hope for compassionate care. I believe they will follow universal precautions in case I have something contagious and learn all they can to protect the public health.
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Post by psychologist on Jun 13, 2006 3:29:23 GMT -5
The patient's account:
I have lost the last three years of my life. I would have been better off to fall asleep in 2003 and wake up in the same room in 2006 with nothing changed about my life. If I had slipped into a coma and had a Catholic family who would have had the support of priests and the Catholic Church to keep me alive until now even though I showed no signs of life that would have been far better than what is happening. I have been too sick to stand up and even get food or do the normal things to take care of myself and practically slept away these years.
I have lost everything and try to hide how sick I am. I have lived in so many places over these years, rented rooms, motel rooms, a friend or cousin who lets me stay awhile, just anywhere I can find to lay my head. If I would get well today I would have the disability of all the people who mistook me for some kind of derelict, drunk or dope addict these years I staggered around sick, in a stupor seeking help, a place to live and try to get well.
Now at three in the morning as I wake up in another state, another room and forget in the dark that it is a different place, bumping into a wall, disturbing others and hearing someone swear at me from a different bedroom I wonder where it will all end. Calls to lyme doctors and lyme contacts have proven futile. Individuals have tried to help but I am convinced it will take a centralized facility where people like me can go for help before it is too late.
We are too sick to make it to doctors' appointments without help. We only eat right and get proper rest when we end up in the hospital. In the hospital we are treated for respiratory infection or something else which ignores the possibility of neurosystemic lyme disease. In my case I learned that insisting I had been bitten by ticks and telling about bull's eye rashes and lesions could land me in the mental ward.
I ended up in this rented room in another state after someone who had been a neighbor and best friend for more than ten years had broght me here because she believed I would get well at her house. At the airport she hugged and kissed me and was so happy to see me. In less than 24 hours at her house things began to change. Like each person before her who had thought that just being there for me would change everything she was sorely disappointed.
I was falling asleep when I should be awake, staring blankly when I should be attentive, unable to eat or carry on normal conversation when it was expected, awake in the middle of the night and just everything that people do not want in a house guest. She decided that I should use paper cups and plates and not anything that they might use. They were very afraid of catching whatever was wrong with me. I woke drenched with sweat, followed by chills and sometimes screamed aloud in pain.
Her grandchildren were not allowed near me for fear of infectious disease. I found a room and got out of their house. Now these people want me out. If there was a place to go and be tested by those on the cutting edge of lyme and associated disease research I might have hope. All I have is a disability check and I wonder how many people are like me, with no family or support system at all, nowhere to go, too sick to stand or walk and only the prospect of a homeless shelter.
How many of these sufferers had useful, productive lives before an illness that robbed them of every single day for years? How much has been wasted in human potential, never to be recovered? How much longer will this squandering of life and human productivity, creativity, basic human dignity continue?
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Post by Administration on Jun 20, 2006 20:52:11 GMT -5
Can you call me? I returned your call but only got a machine... Is there any other way I can reach you?..
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Post by psychologist on Jul 8, 2006 3:23:46 GMT -5
Hi Mari,
I think you have been overwhelmed with data. I have been and we work as our health permits. Thanks for agreeing to converse on the board instead of on the phone. Two important reasons: We have record of data documenting readings, conversations with sufferers, observations and the other reason is someone reading this may have something to contribute that will broaden the data base.
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Post by psychologist on Jul 8, 2006 3:42:39 GMT -5
Yes, Mari---as a matter of fact I have accumulated quite a few questions over several weeks and especially in reference to patient 1, could you tell me anything you have documented regarding lethargy, paresis, lesions and a smell of amonia? Also I am interested in any reports of necrotizing tissue or protein identified in association with lesions.
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Post by psychologist on Jul 8, 2006 4:22:30 GMT -5
It seems the worst reports are associated with the hot humid weather and summer season. There are descriptions of something like seeds, granular in the lesions and a supposition of flies laying their eggs in the patients' skin. People would apparently rather suffer than be told they are delusional with no work up or even a serious visual to serve for investigation.
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Post by psychologist on Jul 8, 2006 4:50:25 GMT -5
Isn't patient 1 the one who never smoked a cigarette in her life, yet she has chronic bronchitis and all the symptoms you would expect from a heavy smoker? I think you mentioned heart trouble as well.
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Post by psychologist on Jul 8, 2006 5:15:32 GMT -5
Ok. I would like to just stick with patient 1 for now if that is alright with you. I was hoping we could discuss a number of patients and people who have responded to questions. If we can manage profiles or vignettes of ten or twenty patients, others reading the board might PM with signs and symptoms, history relating to course of illness from onset until present. It seems that patient 1 has fewer cutaneous and more systemic problems if I remember correctly.
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Post by psychologist on Jul 8, 2006 5:46:58 GMT -5
It seems that most people who are very sick had a period of stress either physical or mental or both shortly befor the initial onset of illness. Did patient 1 mention serious stressors?
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Post by psychologist on Jul 8, 2006 6:23:20 GMT -5
This is an example of the role of psychoneuroimmunolgy in disease process. You did not go into much detail about how long the stress lasted or what sort of stress. For some people some emotional stress tips the scale and they succumb to illness. For others it takes chronic, severe, unrelenting psychological and physical stress over a very long time before they get really sick. I am interested in symptoms which have changed over time. Perhaps you will be able to fill in some of the details about the stress, anything that may have brought about exhaustion, the progression of symptoms. Also if symptoms subsided, did new, more serious symptoms occur?
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