Posted in the Portland Forum
#1 Aug 19, 2010
do you have morgellons? I wonder how many people have this new disease.
If anyone knows what it is or how to treat it, plese let us know. Silver helps, but it is not the cure, it is a temporarry bandaid.
IS IT CONTAGIOUS?
why won't the CDC look into it?
#2 Aug 21, 2010
I never even heard of it
#3 Aug 22, 2010
There's s a new disease every week. Because people eat meat.
#4 Aug 25, 2010
Morgellons Disease; Real and Spreading Rapidly and There is Hope
Morgellons is a systemic disease that has not yet gained widespread acceptance in the medical community, yet it actually exists just as AID/HIV existed 30 years ago before Medical Science recognized it. It is similar to scabies, which is a contagious skin disease in which parasites burrow under the skin and lay eggs. These parasites belong to the arachnid family. Symptoms vary from one patient to another. Others, such as skin lesions and a “crawling sensation” in the skin are consistent. Areas of the body where the disease seems to be most severe are on the hands, behind the knees and arms, on the chest and back. Other common physical symptoms are rashes and pain that is similar to fibromyalgia. Severe depression often leading to suicide is all too common.
When seeking medical help, Morgellons sufferers are nearly always diagnosed with Delusions of Parasitosis (DOP). Currently, there is no known test for Morgellons disease so patients are always told "it is all in your head" and are prescribed physo-tropic drugs and occasionally antibiotics. Neither provide any relief whatsoever from these horrible symptoms. The patient's family often believes the doctor and they withdraw their support. Morgellons patients begin to feel hopeless and continue their descent into severe depression.
Many patients have reported trouble concentrating while constantly experience fatigue. When affected areas are viewed under a microscope, many Morgellons patients have clusters of multi-colored fibers beneath the unbroken skin. These fibers may or may not be visible with the naked eye. The fibers have been tested in several labs. They will not burn until they reach 1,700 degrees Fahrenheit and are covered in some sort of high-density polyurethane. A recent study has found microscopic parasites in some patients. This parasite is known to feed on algae, bacteria and decaying organic materials. They thrive in wet or damp surroundings. Unfortunately, there is no meaningful research being conducted since the Morgellons population, while global in nature and increasing daily is still statistically insignificant.
The results are inconclusive as to the cause of Morgellons Disease. The Centers for Disease Control refers to it as an unexplained dermopathy and they are currently conducting an investigation at Kaiser Hospital in Oakland, California.
Many dermatologists and psychiatrists consider this a psychological disorder, rather than a physical disease. Medical doctors generally treat the condition by prescribing antibiotics, antifungals or herbal supplements. These methods are considered treatments rather than cures, as the symptoms return when discontinued. Colloidal silver has been marketed as an alternative medicine for this condition as well as many others, from fibromyalgia to E. coli. From a medical standpoint, there is no proven effectiveness for this treatment. The most severe symptoms are debilitating and in many sufferers, their quality of life is reduced drastically with absolutely no hope of relief. Until now, that is.
Many Morgellons sufferers have found relief when NutraSilver is used. They state that;
• the lesions begin to heal after a week
• The sores usually dry and fall off completely within three weeks
• The bouts of stinging and biting sensations that plague sufferers are reduced or disappear altogether
• The severe cognitive issues generally resolve in about two weeks.
• When taken as suggested, these fortunate Morgellons sufferers actually get their lives back; their energy returns, their brain-fog reduces and they begin to feel like themselves again.
For more information on NutraSilver, visit the web site at www.nutrasilver.com
#5 Aug 28, 2010
I don't know if this is a real disease or not. There isn't much proof that it is. But...
I went to the doctor with a complaint of itchiness. The doctor took one look at me and prescribed a minor tranquilizer. I dutifully took it.
I didn't like the effect of the drug. I was sleepy and had difficulty thinking. The itching continued to increase and spread.
I returned to the doctor and he said it was in my head. I went to another doctor outside my insurance, paid cash and was told the same thing.
I really felt I was going to go nuts with the constant itching that was worse at night so I could hardly sleep. My skin was looking like hell. I became isolated.
I spent hours in the library and I came up with something I never heard of -- scabies. It seemed to fit. So I went to the public VD clinic and after an interview I was prescibed a lotion to treat scabies.
I laundered everything (again) and applied the lotion as directed. Soon the itching started decreasing for the first time in more than a year. It took several weeks for the itchiness to disapear. Scabies' itchiness is caused not by the mites but by the mites' poop, which needs time to work its way out from under the skin.
To this day I fear human touching because of the fear of reinfection. I fear I might have infected others and for that I am truely sorry. And I have distrust of doctors and the entire medical industry that easily dismisses patients' complaints.
#6 Sep 9, 2010
to itchy n scraty, thanks for your reply. I have watched my sister suffer both the disease and the doctors misdiagnosis. If she has delusional parasitosis then so do I. I have seen the lesions, the fibers and even strange looking bug parts under a microscope. I got rid of the microscope because I was too scared to look any more.
I know everyone is saying nutra siler, but my sister has had better results with a moleculer silver. It doesn't cost as much a nutra and seems to work better. The moving pigment on her face is clearing and there isn't the constant lesions and draining on her chin.
good luck to all and feel free to email me. If you have a good treatment, please let us know.
The skin remedy of apple cider vinegar and baking soda spray on skin and let dry and then scrape off seems to loosen up the gooey resin that surrounds affected areas.
maybe we can all help each other.
#7 Sep 11, 2010
Morgellons disease is a skin disorder that has not yet gained widespread acceptance that it actually exists. It is similar to scabies, which is a contagious skin disease in which parasites burrow under the skin and lay eggs. These parasites belong to the arachnid family. Some symptoms vary from one patient to another. Others, such as skin lesions and a “crawling sensation” in the skin are consistent. Areas of the body where the disease seems to be most severe are on the hands, behind the knees and arms, on the chest and back. Other common physical symptoms are rashes and pain that is similar to fibromyalgia.
Many patients have reported trouble concentrating and constantly experience fatigue. When affected areas are viewed under a microscope, many Morgellons patients have clusters of dark fibers beneath the unbroken skin. These fibers are not visible with the naked eye. These fibers frequently work their way out of the skin via the sores and lesions that accompany the disease. Unlike scabies, there are no parasites present when patients are tested. However, a recent study has found a microscopic parasite in some patients. This parasite is known to feed on algae, bacteria and decaying organic materials. They thrive in wet or damp surroundings.
The results are inconclusive as a cause for Morgellons disease. The Centers for Disease Control refers to it as an unexplained dermopathy. Many dermatologists and psychiatrists consider this a psychological disorder, rather than a physical disease. Medical doctors generally treat the condition by prescribing antibiotics, antifungals or herbal supplements. These methods are considered treatments rather than cures, as the symptoms return when discontinued. Colloidal silver has been marketed as an alternative medicine for this condition as well as many others, from fibromyalgia to E. coli. From a medical standpoint, there is no proven effectiveness for this treatment.
Regardless of official reports, many Morgellons sufferers have found relief when it is used. They state that the lesions begin to heal after a week, with the sores dissipating within two weeks. The bouts of stinging and biting sensations that plague sufferers are reduced or disappear altogether. The most severe symptoms are debilitating and in many sufferers, their quality of life is reduced. For more information on scientifically engineers, cluster water and the many advantages of using colloidal silver for a healthier life, visit the web site at www.nutrasilver.com .
#8 Oct 9, 2010
My sister used nutra silver, but htat is not a cure. this is a heavy metal and can only be used in moderation.
She has since stopped using it and changed to molecula silver and mms. she says she is feeling better, but it is still not gone. so these silver solutions are bandaids, not cures. I'm looking for the cure.
Meanwhile, the worst part is not knowing how it is transmitted. I basically treat her like a lepar.
personally, I think it is a virus, mostly because I have noticed that many people have lesions around their noses and mouths. Virus' usually come out where they went in. Which makes me think they inhaled it.
Question is: inhaled what? where? When? is there an incubation period? Or is this a reaction to something we are eating, drinking, breathing, touching, wearing?
I would like to see a report from the CDC. Without that it is just speculation on the part of laymen.
We thought red M&Ms were safe until we found out that they caused cancer.
What about the animals? Can this be transmitted to and from our pets?
#9 Nov 23, 2010
I have seen some new videos on youtube by doctors who are trying to educate other doctors.
the title is "morgellons conference 2010"
Each new remedy seemsto help for, at most 4 months, and then the symptoms or new symptons come back.
Right now my sister's eye is swollen. she looks like a boxer who took repeated hits to the eye socket. This is a symptom I have seen on various parts of her face. Big, swollen, red lumps that move inches in minutes. It is literally like a horror movie.
Saint Petersburg, FL
#10 Nov 23, 2010
The Standard will exclude it from disability benefits and life insurance. They suck.
#11 Dec 11, 2010
I live in Portland Oregon and I believe that I have Morgellons. I have had symptoms for six months now and recently I noticed strange fibers in my open wounds. I originally thought I had a serious problem with slivers after building a shed with particle board. After pulling out what looked like egg sacks, I got out my 20x lense and that is when I discovered the fibers. Last night to my shock and horror, I saw one of the fibers moving! I am freaking out and would like to hear back from anybody that has it or can direct me toward getting help. I called OHSU infectious disease department and they warned me that their standpoint is it parasotosis. Please get back to me, sincerely, D.
#13 Dec 12, 2010
I am so sorry to hear about this.
There isn't much that can be done. There is a company that promotes silver as a cure, but it is not. It will lessen the sym[toms for short period of time, but then it will come back with vengence.
Check out youtube, there are may people who have it and are documenting their wymptoms and what they are trying.
I think a key is to detox on a regular basis. another good band aid is mixing baking soda with lemon juice, letting it sit for 3 minutes and then drinking it. Bathing in it helps too.
Please don't get discouraged as it seems that it is not deadly, but it is incurable, so far.
Watch what you eat, try to stay away from genetically modified foods. There is a theory that it is a GMO that has gotten into people.There is a post on how to make your own colloidal silver on youtube as it is ery expensive to buy.
There are also conflicting thougts about whether or not it is contagious, so err on the side of caution and try not to share clothes or bedding with those you love.
My email is email@example.com
i can keep you updated with my sisters conditions and remedies.
There is also a post on youtube about food codes so you can distinguish between genetically modified fruits and veggies.
email me anytime. Again I am so sorry to hear this. It seems to be rampant in oregon, california, texas and Florida, but is everywhere now.
Don't let the doctors dicourage you either, everyone gets the delusional parasitosis diganosis.
#14 Jan 10, 2011
I also live in Portland, and am a survivor of Morgellon's disease, for about a year. What a nightmare. However, the effects have been mostly positive. I've totally changed my diet, thanks to the King Diet, discovered by a fellow survivor. And homemade silver, and Max One. I still have rosacea and acne, but am healthy, fit, and no lesions and not much itching.
This horrific situation can change your life for the better with a spiritual attitude and a lot of patience and internet research on what works right for you. Don't think about cure, think about overall health. I'm learning to let go of my facial skin's appearance. It might never be the way I want it.
#15 Jan 15, 2011
Glad to hear you are working on your overall health. that is what my sister has done. She has gone into full detox mode.
She is getting healthier too and feeling better, but still some problems with the skin. she has had 2 large (golball sized) removed from her stomach.
It seems that everyone who gets this is first accussed of having parasitosis, when clearly there is something there.
My advice to anyone who developes symptoms is not to say the word morgellons toa doctor becasue they automatically stop looking for anything and declare parasitosis.
My sister has had success with homemade silver, sodium citrate, enzymes and lots of vitamin C. Also lots of good food, no junk or processed food. And alot of bathing to remove whatever gunk is coming out of the skin.
Try not to get caught up in the paranoia about aliens and government spraying because even if this is true they are not going to admit it and the energy that you have should go int getting better. If you work at it, I think you will get better, but it takes a couple of years.
#16 Feb 28, 2011
Northern California - I am a recent transplant from the East Coast. I have had a diagnosis of Morgellons' for close to 2 1/2 years; I have had symptoms for 3 1/2 to 4 years. I was diagnosed with Delusional Parisitosis, scabies, cat fleas, bipolar disorder, and unknown skin disorders. The CDC has a data base and calls Morgellons' a skin disease of unknown origin. The Mayo Clinic recognizes Morgellons, and the Morgellons Research Foundation has the most comprehensive information available for physicians and patients - including lab guidelines for detection or diagnosis. Research grants were given to Kaiser by the CDC or NIH in Northern California. You must be part of their insurance plan to participate.
As with many obscure maladies, it is frequently a diagnosis of elimination. My M.D. in Baltimore treats many adults with fibromyalgia and chronic fatigue syndrome. He found a frequency of Morgellons' occurrence in this population. Autoimmune disorders increase the vulnerability to Morgellons'. Treatment (particularly systemic) for arthritis and other autoimmune diseases may open the door to Morgellons'.
I have cycles of inflammation and lulls but no complete remission. When in a flare, I am treated with a 12-week protocol using antibiotic, antifungal, antiparasitic, anti "worm", and anti-inflammatory medications. They are combined and alternated each week to give an overall therapeutic treatment. Unfortunately, the cure can be tough on the liver, the GI system, and life in general.
Whether this is an agrobacteria or some other infectious agent, it is obvious the disease is on the rise. The OCD aspects that accompany the disease increase one's chance of being diagnosed psychologically. UCSF Dermatology wants me to take Orap, a medication used for Turrett's Syndrome. With permanent dyskinesia a possible side effect, I declined.
Whether we are canaries in a coal mine or just a vulnerable population to processes that others go through with less difficulty, I don't know. The concept that inorganic substances are extruded through the skin from interstitial space is rather disturbing. The symptoms and social stigma may exacerbate one's tendencies toward depression. Please keep talking until someone listens.
#17 Mar 20, 2011
I called the Mayo Clinic and was referred to the CDC website. I am not crazy. I cannot find a doctor who will even consider Morgellons as a disease including the Mayo Clinic. My doctor has been treating me for about 2 years for pain, but because she does not know what is wrong with me she suggested I see a Psychologist.
Why is the CDC's report late being released?
The mind fog and blurred vision are getting worse.
I am from the East coast now living in Phoenix?
#18 Mar 20, 2011
Phoenix transplant: I sent a response to topix but I also am responding here. Please check the sites below, particularly the last one. You can print out the official diagnosis parameters and also the information for physicians. My current counselor feels bad because she told someone that exhibited symptoms several years ago to see a psychiatrist (thinking it was DoP). Try to avoid the psychiatric route; I went there when I couldn't sleep for days and began to cut the lesions out. I ended up on lithium and seroquel. I did finally get a diagnosis and a doctor in Baltimore. University of California at San Francisco has a clinic but suggested a Turrett's Syndrome medication to me. I was not interested as it had the possibility of permanent tardive dyskinesia as a side effect.
I use an experimental protocol for 12-week periods with some down time between (depending on my symptoms). It is physician-based and tough on your liver and system. I hope the sites help, and keep pushing (but with the paper work from the site in hand).
#19 Mar 20, 2011
I have had this dreaded affliction for 4 years now. It has changed my life, and affected me in every way. Aside from the obvious, physical changes that have occurred with my skin,and the constant pain, combined with the disturbing neurological effects; perhaps the most damaging effect of this disease has been the loss of credibility, with almost everyone I know. The self-doubt that I've let this pattern bestow on me, coupled with the pain and exhaustion, has all but crippled me. And lastly, the skepticism and ignorance of the medical community, which is clearly what fuels the loss of credibility with family and friends, employers,ect...then undoubtedly this has instilled one the ugliest of all traits...bitterness. My question is...How could it not! When we all have physical proof that absolutely no one will look at! I'm thinking what on earth was I thinking...when I thought the dermatologist would take a look at my pictures...even just a couple?? Sorry...I mean they don't even look at my skin, or anything I'm trying to show them...patterns, similarities,changes; nothing!!! They look at nothing!!! Now maybe it would be possible to live life as normal if it were only skin deep...But it's not, and I am not that shallow. It's downright frightening, and inhumane, is what it is...So, yeah dammit, I'm mad as Hell!
#20 Mar 27, 2011
kimmy, you hit the nail on the head. I have been to all the web sites sharon e posted. I need a doctor who will believe ME. My Integrity and Credibility are in question at this point! Doctors look at me like I am crazy some have never even heard of Morgellons. I found Morgellons 01/2011 by searching out my symptoms on google. Here is a small list of the most recent prescriptions.
Vimpat 100mgs twice a day. This has helped with the mind fog.
Trazodone 50mg a day.
Hydrozyzine HCL 25mg 3 times a day.
Lyrica 75 mg twice a day.
I work a full-time job. LOL I am expecting to be fired soon for missing so much work.
Sharon e give me a name of a Doctor how will treat me in any state? Thanks for letting me vent.
Have any of you ever had MRSA?
#21 Mar 29, 2011
kimmy and comfort -
First, I have been marginalized, doubted, and shunned for Morgellon's and for other skin disorders. I have had psoriasis for over 40 years; if you name a rash, I've most likely had it. Cellulitis and weeping staph infections occurred when I reacted to Enbrel and got eczema to add to the mix. My doctor couldn't tell what was going on, but she did know I couldn't work and put me on family leave.
As for doctor's here, Dr. Yoo is at UCSF and seemed aware but not as active in my treatment. This is because my physician in Baltimore already had me on a regimen including 2 antibiotics, stromectol, vermox, flagyl, ketaconazole, fluconazole, and a couple more anti's. For sleep, I was on trazodone and clonepin. For inflammation, 5 mg hydrocortisone. For the incessant feedback loop of skin sensations, I was on seroquel and xanex for anxiety. Ginger Savely, a nurse practitioner, is in San Francisco, but from checking, I know this is a costly route.
Sleep, that commodity that comes so rarely when you feel like this, is important in bolstering your immune system. Stress is another situation that exacerbates the condition. What about this isn't stressful, or personal, or difficult? Yet I try rather hard to not take it personally and push through each day. When I'm in a flare, it's much more difficult to go out anywhere and to be in my skin. My ex-husband found this diagnosis before a doctor did, but my marriage didn't stand through all of this. I'm on remicaide for my arthritis, and because it suppresses my immunity, I'm more vulnerable to Morgellon's.
Does the Morgellon's Research site list any physicians? I know it's frustrating to deal with this disease, the doctors, and the social stigma. It's not like we all went out and played in traffic, rolled in a field of fleas, decided we wanted to have a reason to be miserable. There are compassionate doctors, and there are those who are uninformed about Morgellon's. Educate them and show them the evidence. Give them the paperwork to read over. I've handed to my physicians in CA as they're all new (I've been here almost 2 years). BTW they call it matchboxing when we save the things our skin extrudes. It's a psychological diagnosis. Ask them to take samples or how you could provide them with some?
Either way, be careful about the charlatans and snake oil salesmen. Take care of your skin, your spirits, your nutrition, your sleep, and yourselves.
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