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Post by lostintime on May 11, 2013 2:09:49 GMT -5
Now you know how I feel
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Post by lostintime on May 10, 2013 12:30:52 GMT -5
Baraka, I hate to be the bearer of good news but I got to tell ya. You don’t have morgellons disease. I’m not sure what it is that troubles you but in my opinion you might do well to look into other medical conditions. We have spoken a few times over the years and I follow most of your post and I mean this sincerely as a friend. You’re not in touch with true symptomatology of Morgellons. I wish you well my friend but I don’t see how anyone here can be of help to you.
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Post by lostintime on May 10, 2013 3:13:25 GMT -5
Susiq, I would like to thank you for that perfect description of our daily lives. From the folks that truly suffer from morgellons disease you are spot on. There is no doubt that this disease does significant damage to us on a neurological level. There has not been one person I have met with morgellons that does not struggle with the task you mentioned every day. (for the way I Look, for not cleaning the house or doing laundry, for not paying the bills, for not being able to drive, for not wanting to go shopping or visiting friends, etc.) I used to be neat and tidy, never even paid a bill late in seven years before this happened to me. In the last seven years with this I pile up my mail, fill cardboard boxes with it. Stacks of medical papers everyplace, some fill boxes others just get placed in piles. Two thirteen-gallon trash bags hold all my empty pill bottles explains where all my money went. I look back on the career I had, the home I had, the friends I had and the love I had and how it’s a distant memory now.
Activity? Not sure where you’re going with that, but I can say the last month has been a living hell. This hit me seven years ago and none of it has been good. I’ve had some ups and downs (mostly down) but it does seem lately that things have gotten worse. I can’t even get out of bed during the day, I look like hell and feel worse. Suicide crosses my mind often but then I think about all the doctors that have done me wrong. Why not murder? I mean really, why should I take myself out because I was treated so poorly by the medical profession or denied over and over by an insurance company for benefits. Things are bad and all I see these days is disheartened people by a CDC report, fighting amongst the people suffering and junk science trying to draw sick people into the 30 year fight over lyme disease. The so-called support boards are completely out of control and are of no help to anybody. It is sad to read post by people you can relate too only to see them drop out and fade away. There are tens of thousands if not hundreds of thousands of people truly suffering from morgellons disease and we can’t find a way out of a dark tunnel with both hands and a flashlight. Thank you susiq for reminding me that there are others out there that have all the same problems as I do. I’m just beyond sad and am at a complete loss. Too many years have past for hope.
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Post by lostintime on Apr 26, 2013 1:03:03 GMT -5
I just went to the current mayo clinic page on morgellons. Noticed that it was authored by "Mayo Clinic Staff"
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Post by lostintime on Apr 24, 2013 4:19:17 GMT -5
I guess I am irritated because this board is just useless. I’m not trying to reprimand anyone but was pointing out how topics get off topic and go nowhere. Sometimes I see people change the subject right off the bat so a conversation never gets started. . I wasn’t even addressing you at the time.
I am really tired and need sleep. Try to post my mission statement so everyone will know why I come here If your interested. Nite.
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Post by lostintime on Apr 23, 2013 20:20:27 GMT -5
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Post by lostintime on Apr 23, 2013 17:49:57 GMT -5
Am I missing something? I do not see any question from ppy18 about the CDC. Wake up before you comment. ppy18 I too have issues with the mayo clinic and would like to find that paper as well. I kinda remember the doctors name that wrote it was Dr Davis or something like that.
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Post by lostintime on Apr 22, 2013 20:24:20 GMT -5
Why Medical Research is at Risk
Since the completion of the unprecedented doubling by Congress of the NIH budget in 2003, appropriations for the NIH have remained essentially flat. When one factors in the rate of biomedical inflation, the agency has effectively lost approximately $6 billion, or 20 percent, in purchasing power and therefore its ability to fund life-saving research. And as a result of Congress and the White House’s inability to reach agreement on a balanced alternative to deficit reduction, President Barack Obama recently signed an order authorizing the government to begin cutting $85 billion from federal agencies, officially enacting across-the-board reductions known as sequestration.
Sequestration, originally slated to go into effect Jan. 2, was delayed two months with the hope that the new Congress might reach a more balanced and comprehensive budget agreement. With the enactment of the sequester, the NIH budget has been slashed by 5.1% or approximately $1.5 billion. This means now that NIH is funded at $29.1 billion and the NCI at $4.8 billion. NIH director Francis Collins, MD, said recently that the agency will try to “prioritize things that seem most promising, most critical to public health, but there’s no question there will be across-the-board damage to virtually everything.”
These cuts are particularly disconcerting to the research community because it comes at a time when scientific opportunity has never been greater, and administering a reduction of this scale in such a short timeframe will be devastating to the biomedical science enterprise. It will require arbitrary funding cuts that will prevent critical research projects from reaching completion and will ensure that other potentially lifesaving research will not even get off the ground.
If we are to address the health challenges of an aging and increasingly diverse population, and remain a vibrant force in the global economy, America needs more investment in medical research, not less. We respectfully urge Congress and the Administration to work together on a solution that preserves the nation's investment in medical research and the health of the American people.
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Post by lostintime on Apr 17, 2013 22:44:40 GMT -5
This is becoming more common then you think. This is a must read to understand how your health care works for you.
Physical Illnesses May Soon Be Labeled “Mental Disorders” Act now to prevent physical illnesses from being categorized as mental illnesses Published on December 27, 2012 by Toni Bernhard, J.D. in Turning Straw Into Gold DSM stands for The Diagnostic and Statistical Manual of Mental Disorders. It is often referred to as the The Bible of mental disorders because it’s what health care practitioners use to decide if their patients have a psychiatric disorder or not. The DSM-5—its 5th edition—is about to go to the printers and will be released in May 2013. It is published by the American Psychiatric Association (APA) which gave final approval to the DSM-5 even though more than fifty mental health professional associations petitioned for an outside review, and even though professional journals, the press, and the public vehemently objected to several changes that were made to this edition. In this piece, I want to discuss Somatic Symptom Disorder or SSD—a new diagnosis that’s been added to the DSM-5. It has garnered little attention. One exception is a recent article written by Allen Frances, M.D., “Mislabeling Medical Illness as Mental Disorder.” In my opinion, Somatic Symptom Disorder is a dangerous addition to the DSM-5. For an update on the status of SSD and the DSM-5, see my article of January 17, 2013: "Your Physical Illness May Now Be Labeled a Mental Disorder." The word “somatization” refers to psychological stress that manifests in the form of physical symptoms. In other words, a person’s physical symptoms are traceable to a mental or emotional cause rather than to a physical one. The current edition of the DSM—DSM-4—has a category called “Somatoform Disorder,” but it is so different in criteria from this new Somatic Symptom Disorder, that I won’t take the time to compare them. And Somatoform Disorder is being replaced by SSD anyway. Here is the new DSM’s definition of Somatic Symptom Disorder. (Warning: you may have trouble believing what you’re about to read.) People can be diagnosed with SSD if, for at least six months, they’ve had one or more symptoms that are distressing and/or disruptive to their daily life, and if they have one of the following three reactions: Criteria #1: disproportionate thoughts about the seriousness of their symptom(s); Criteria #2: a high level of anxiety about their symptoms or health; or Criteria #3: devoting excessive time and energy to their symptoms or health concerns. Are you doing the same double take that I am? That double take warrants repeating this information. Once again, here’s the recipe for SSD. Take only one six-month-old bodily symptom that is distressing or disrupts your daily life. Add to it one of the following: disproportionate thoughts about the seriousness of the symptom or a high level of anxiety about the symptom or about your health or devoting excessive time and energy to the symptom or to health concerns. Can you see how this diagnosis potentially includes everything from a stomach ache to Cancer? One more repeat, this time using a hypothetical: For six months, you’ve had bad gastrointestinal symptoms that have been disruptive to your daily life because you can’t be far from a bathroom. In the subjective view of a diagnosing health practitioner, you’ve spent excessive time and energy “devoted” to trying to figure out what to do about it (criteria #3)—SLAM—you are now suffering from a mental illness: Somatic Symptom Disorder. After studying the criteria for SSD, it’s hard for me to escape this conclusion: Toni Bernhard. Diagnosis: Somatic Symptom Disorder. For more than six months, I’ve had symptoms that disrupt my daily life (assuming “disruptive” includes having had to give up my career... ). I have at times had “disproportional” thoughts about seriousness of my symptoms (criteria #1) Why? Because for almost twelve years, I’ve felt like I have the flu, but existing medical tests can’t pinpoint a cause. Wouldn’t anyone in this position have concerns about whether these symptoms are serious? This in itself qualifies me for a SSD diagnosis since I only have to meet one of those three criteria. But I guess I really suffer from Somatic Symptom Disorder because I also come under criteria #3. I go through phases where I “devote excessive time and energy” to trying to figure out what the heck to do about my symptoms (criteria #3). This third criteria really gets my goat: I am mentally ill because I’m vigilant in trying to find ways to improve my health. In addition to well-recognized illnesses such as Cancer, Diabetes, Heart Disease, here are some physical illnesses that could easily come under this new criteria: Chronic Fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome, Chronic Lyme Disease, Chronic Migraines, Neuropathy, Rheumatoid Arthritis, Interstitial Cystitis, Systemic Lupus, Ehlers-Danlos Syndrome, RSD, Gulf War Syndrome and other chemical injuries… the list could go on and I’m sure you who are reading this could add to it. What’s the problem with all of this? I recognize that there could be a plus side to being diagnosed based on the DSM. Some health insurance companies won’t cover mental health treatments (from therapy to psychotropic drugs) unless the patient has a diagnosis from the DSM. So if you wished to seek therapy or try these medications to help you adjust to the drastic life changes brought about by chronic pain or illness, it’s possible that this expanded definition of somatic disorders will allow you to get these services paid for by your insurance company. But the downsides of including Somatic Symptom Disorder in the DSM-5 far outweigh the benefits: 1) Those of us with little-understood illnesses who are “excessively” proactive in trying to get answers could have a psychiatric diagnosis added to our medical charts. Then every specialist we’re referred to would see it. The stigma of mental illness is, unfortunately, alive and well in the twenty-first century. In addition, for many of us, it would become a double stigma because we already have a diagnosis that is disregarded by many health care practitioners—CFS, Fibromyalgia, IBS, to name but three. 2) Once a person is diagnosed with a mental disorder, it increases the likelihood that his or her doctor won’t look further for a physical basis for that person’s symptoms. (And it’s possible that health insurance won’t cover those tests anymore since the person has been labeled as having a mental disorder.) This could even affect the motivation to continue to fund and perform research into little-understood illnesses such as CFS and IBS. And what about illnesses that can take years to diagnose, such as Lyme Disease, Fibromyalgia, Multiple Sclerosis, Systemic Lupus and other autoimmune diseases? If a patient is given a Somatic Symptom Disorder diagnosis early on after reporting symptoms, it’s highly possible that further testing and investigation into physical causes will be put on hold and a person would never get the proper diagnosis and treatment. I thought the rule of thumb in medicine was to rule out physical causes before settling on psychological ones. I’ll end with this hypothetical, contributed by my husband. It relates to criteria #3: devoting excessive time and energy to symptoms or health concerns. What does that criteria suggest to diabetics regarding just how concerned they should be about what they eat? “Go ahead and have that ice cream…and don’t be so diligent about weighing your food on those scales. After all, you don’t want to be devoting excessive time and energy to your symptoms or health concerns.” I hope the APA decides not to add Somatic Symptom Disorder to the fifth edition or, if it does, it will change the criteria so the disorder includes only those who truly suffer from somatization.
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Post by lostintime on Apr 15, 2013 1:04:53 GMT -5
Misinformation can come in many forms. Posting all sorts of things that don’t have anything to do with Morgellons is one way. Trying to lead people to believe Morgellons really is another existing illness such as lyme disease or Delusions of parasitosis is another form. Continuing to post the names of profiteers or conspiracy theorist has been a long standing misinformation campaign. Yes even starting arguments can be considered a form of misinformation by way of distraction.
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Post by lostintime on Apr 12, 2013 0:23:14 GMT -5
Dawn dishwashing liquid
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Post by lostintime on Apr 10, 2013 19:44:53 GMT -5
No worries, mine and your ideas run parallel often.
I think this statment from the Urban Tulsa Weekly sums it up for me. "However, Wymore no longer answers his phone in an effort to avoid lengthy and ultimately fruitless conversations with Morgellons sufferers. But he said he gets calls and responds every week to doctors" who take Morgellons seriously.
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Post by lostintime on Apr 10, 2013 17:32:03 GMT -5
“Phoretic mites but with a twist. I have yet to see a demodex mite from my body “
This is the statement I was referring too. As I wrote my comment to susiq and entered the word demodex I just knew somebody out there would take it out of context. Scab was trying to emply morgellons was not caused by demodex mites. I whole heartily agree that demodex mites do not have anything to do with morgellons. Everyone has demodex mites at some point in their life and most people live with them their whole life and don’t even know it. The ideology of the eye doctor was that if demodex become over infested in the eyelashes it can cause eye irritation. The treatment for this is to cleanse your eyelids with baby shampoo. Later in the post morghunter post about j & j no tears and scab gets back in the conversation to praise the suggestion. Scab you can debate your intentions but will let the readers decide.
Now for bb’s statement, .” Zapping is also very effective, though not a cure. I swear I could feel them coming from behind my eyes after zapping. It felt like a flea jumping inside my eye socket, heading toward the front. It seems they get in my eyes during the night, because I find them in the morning mostly in my eyelashes.”
While you did stay on the topic of eyes I never made the connection between zapping and susiq’s problem with her eyes. Although I don’t know all the science behind zapping I am pretty sure it is not a good idea to suggest to anyone using any kind of electrical currant to treat any eye problems. It seemed you were capitalizing on scabs comment and treatment of mites. My apology, I have cognitive issues too.
Now back to susiqs question of why people don’t post anymore. BB your reply demonstrates complete hostility and loss of self-control. I understand this completely as it happens to me on a daily basis but this is a great example why people don’t post anymore. All the people that suffer from morgellons are suffering from a long-term chronic illness. This chronic condition leads to depression and irritability. With this type of hostility and loss of control it is completely impossible to have a serious debate or conversation regarding morgellons disease. I am not singling you out on this bb, this relates to everybody. I was not trying to attack you or scab.
Here is some food for thought. When reading email, text or post, one must remember that you cannot hear tone of voice or see facial expressions. It is very easy to misinterpret the mindset of the person sending email or posting information. Much of the way you interpret information rests on how you feel when you read it. Ideology also plays a huge roll on the way you respond. I have been guilty of making these vary same mistakes but have worked on getting better. Hope everyone does the same.
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Post by lostintime on Apr 10, 2013 1:44:45 GMT -5
Thank you lynn but how are you going to move the post's around? Do you moderate this board? By the way I did not say it was on this topic, read what I wrote.
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Post by lostintime on Apr 9, 2013 22:00:43 GMT -5
Thanks bb, got it.
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Post by lostintime on Apr 9, 2013 21:51:51 GMT -5
Hi Susig, I have the same issues here. It is impossible to carry a conversation on this board or any other board. I’m amazed that people can’t stay on topic, not even a little bit. For starters people don’t pay attention to the topic heading. Susiq, your post asking a question about your eyes is a perfect example. Scab you just took a word from my reply out of context and derailed the conversation, then bb went even further into zapping which has nothing to do with the question. I understand this disease causes cognitive problems but it would be nice to clean up this board a bit. When people take a subject off topic point it out. Nobody wants to come here anymore
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Post by lostintime on Apr 7, 2013 20:42:32 GMT -5
I read about that case. Thanks. That’s a good place to start but I hope that’s not the only person in the United States that has sued over this. There has to be others out there or we have bigger problems then I thought.
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Post by lostintime on Apr 7, 2013 1:54:35 GMT -5
Sorry your hurting so much. My eye doctor told me to buy baby shampoo and wash my eye lashes. Getting soap in your eyes is no good no matter what your using so don't put it right in your eyes. The eye doctor was thinking of demodex mites in the eye lashes when he told me to do this. I don't think he really knew what was going on but it did help. I just think the same goo that comes out of our scalp and gets in our hair is doing the same thing with the lashes. Good luck
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Post by lostintime on Apr 7, 2013 1:21:03 GMT -5
I am seeking information on case law regarding morgellons. If anyone here has had to appeal a decision, file a lawsuit, win a court judgment or any other matters regarding morgellons disease please contact me. I am particularly interested in Private long-term disability cases, but Soc. Sec. Cases will help as well. I may be the first person to file a lawsuit against a private insurer, as I don’t know of any other. If morgellons disease has to be recognized one case at a time, so be it. Thanks
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Post by lostintime on Apr 6, 2013 5:38:58 GMT -5
ladies and gentlemen from my read of this post I see a couple things wrong here. I see baraka pointing out his distrust for the rife mech. and know he points out problems with things he does not agree with. So far that’s fine, I have done this several times myself when I see profiteers. I have a friend that bought the rife setup and used it correctly for a long time. It is now in the closet with the other things he has tried. I guess I see rife as phsyco therapy shock treatments used in mental institutions in the 40’s. This is based on the pretence that the person is just not thinking clearly and if we shock him just the right way for the right amount of time we could get you thinking more clearly. This is text book psychiatry. In other words brought to you by the people that think your all nuts. So today it is software. We have been through so much to think a software program is going to cure you? Well good luck with that. I know Braka thinks somewhat like I do about folks coming her to promote a product claiming it will fix the incurable. Beraka may come off as abrasive at times but we all have some anger issues. I like reading barakas post, Some I agree with and some I don’t. I do see little clicks on the boards that think one way or another. We all don’t have to believe the same things and it has become accustom to criticize things you don’t believe in. I have read Davids pages and there really all over the map. I have no problem with that. Its his page and can write what he wants. I do look after the new people here that come desperately looking for help and monitor profiteers off my illness. Truth be told, nobody has ever been cured of morgellons and may never will. I know there are lots of people out there that don’t want to here it but that is the facts. Everyone needs to take a deep breath and treed lightly into new things. If you have money to burn go right ahead, but if you don’t I can bet you there are others that have.
I did want to ask a question, what is all the light or in the light or love in the light stuff? Is that something they say in Europe? Don’t understand it but see it around here a lot. Please explain.
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