Morgellons is a condition characterized by a range of symptoms including crawling, biting, and stinging sensations on the skin; finding fibers on or under the skin; and persistent rashes or sores.
|Skin rashes||Skin rashes and lesions that do not heal.|
|Joint and muscle pain||Joint and muscle pain|
the Charles E. Holman Foundation has a pamphlet that you can download on your computer, and give tons to the local clinics, doctors, health nursing fields, home health, public health, and anywhere else you can think of. Try to be polite and just ask if you may leave them with them. or put them in a rack with other literature. AS far as I am concerned, Mayo Clinic and the CDC are not reputable and I never quote what they say. smoothdeb
There are so many hypothesis out there about what Morgellons is, they are not theories, because a theory is a tested hypothesis. In fact, from what I can tell - so far, as of today 11/21/08 - very little factual information is available to help us figure out what this is, what is causing it, how to manage and maintain it, and most of all how to cure it. The Medical Professionals have not taken our condition seriously and when we sought them out, we were called delusional. We have been forced to go into hiding, some of us quarantining ourselves from our friends and families - not even knowing if Morgellons is contagious. We are having to experiment with over-the-counter solutions, and household items that seemingly do not work to rid us of the pathogens, all we have at this time is the Internet to learn from each what we have found to help manage this terrible disease. People's lives have been and continue to be destroyed by this illness and yet, as of today - we are still getting very little support. We have to raise public awareness, to possibly get enough people involved that can get us some quick research done to inform our Health Care Professionals on what to look for and how to threat us. Supposedly, in a statement from Dr. Hildergard, 1,000 people a day, worldwide are showing signs of having this new epidemic disease. This is very alarming! The CDC is a military run organization, part of our Government that for whatever reason, has been totally ignorning Morgellons since 2002. They are currently in the process of a $300,000 study of 500 people in Oakland, CA - that's $5000 allocated for each person? And, we have to wait until next year to get any of these results. We are in a lot of trouble and we need help and we need to figure out how to get it. At this time, it doesn't appear that our Government Health Organizations are too much interested, in what has happened to us? What can we do? How can I or you, help wake up the people that have the most potential to help us? The clock is ticking and every day counts.
* I use homemade soaps that contain one or more of the following: oatmeal, clay, tea tree oil, sulfur, coconut, mainly. I use it all over, inside my ears where the fungal mites bite and crawl out of, as well as my nose and corners of my mouth. It keeps them at bay so I don't itch and scratch in public. For itching, I take hydroxyzine or atarax 100 mg prn from my doctor. I give it to whomever needs it, as he supplies it by the hundreds in my prescription. Keeping your hands clean and OFF YOUR BODY, is what works for me. If you can't afford handmade soaps, use original selenium Head and Shoulders for a few bucks a bottle. It burns the crotch, but I believe it works there, too. I suffer from fungus, that is my main complaint. I have it in my teeth, nose, eyes, ears, throat, ears canals, mouth, and lungs. 6 of my toenails have been permanently removed from fungus, and my nails are full of black and white fungus all the time. Under a black light at the doctor, the short fibers stick out ALL OVER MY BODY. DEVB IN SOUTH DAKOTA
I've tried http://www.naturalginesis.com/parasites The first day I tried it I went thru 36 ounces of it and that's far to much but being horrified of what was going on with me I didn't think it couldn't possibly get any worse.... Wrong , I ended up freaking out because the stinging/bitting, the crawling sensation, the little white things that come out of your pours, the burning sensation in different parts of my body, and a weird dust ash type of substance on my clothes over the spots that got hot was by far my worst day of the symptoms. The next two following days had little to no "action" after 3 weeks of little to none symptoms it's started to Gear back up to how it was before I used the http://www.naturalginesis.com/parasites
Hello Everyone - I see that quite a few of us are here, however, we're not communcating. It's kind of difficult figure out how to post here, but if look on the top left to "Forum" - and manuever around - you'll get here. I'm a Morgellon's sufferer and would like to interact with others with this condition for the purpose of support and sharing our information. I look forward to seeing your post.
keepnfaith, you will find that there isn't a Dr. anywhere that believes in it. Well, maybe a few. I went to so many Drs. and then I got scared cause I thought my County might lock me up. So I quit going. I was tired of being made a fool out of also; always being told I was delusional. Ha! I suffer from M and I will email you. That is really tough when you don't have the support you so desperately need. No one can say if it is contagious or not. I worry about my grandson cause he is only 5 months old but their parents aren't worried at all. makes me wonder if they really believe I have this. I will email you....Judy
No doctor in Bakersfield Ca believes in this disease, I have a the symptoms and recently found out about it myself, after a year of living in hotels I've ran out of money I've moved in with some relatives, they believe it's delusional so aren't concerned about getting it. Can somebody please tell me if this M is contagious please, I'm having a hard enough time dealing with this and I'm terrified what can possibly happen if the two babies in the house were to get this, I don't know if I can handle knowing that I was the cause of it. Any info is more than appreciated. I would love to talk to someone or anyone that suffers from M. My personal email is email@example.com. Thank you for your time and god bless you all.
My names sal, I've been diagnosed with delusional parastosis, follicleides, eczema, gout. It's been a little over a year and numerous emergency room visits, doctor visits, dermatologist visits, I'm financial destroyed, I've lost everything I owned. About a year and a half ago the visible symptoms started.. A year ago all the other symptoms started, 3 months ago I found out what Morgellons symptoms are, I'm so sad that this is happening to me, I've been told so many times its in my head that I wanted to believe them but the more I research this disease what I prayed was a bad dream its confirmed that this is real by others that suffer from this horrific disease.
Hello Judy, that was my mothers name. My name is Gina I am 48,a widow,from Independence Missouri I have had skin problems for 20 years started as hives which has manifested in many ways.Doctors have never been able to find out what was causing them.Just found out about MORGELLONS ABOUT 5 years ago. I have pictures that are really disturbing and no real support. My faith in God is what has sustained me.I am very sick now all kinds of surgery would love to talk to you further.God Bless
Hello Peaceplayer, I am so happy you came here as the messages are pretty old I did not know it was active any longer. I have had M for about 10 years. It first began with the rapid changes in my face which was the biofilm spreading on me, although I did not know it at the time. It was in 32008 that I first felt like something was moving on me. I have gotten rid of much of the biofilm build up but still have the movements...and of course like anyone else, most Drs. think I am delusional. Please tell me more about yourself. I hope we can become good friends as we go along here. I have so much to tell you and I'm sure you so as well. It will be nice getting to know each other. Looking forward to hearing back from you, judytoo
I have had several mri scans following a diagnosis of "empty cella syndrome". The first mri showed seizure activity. Three scans have been done since then and they all have shown seizure activity. I had been placed on seizure medication following the first mri. I did seek another opinion from a Neurologist because I have never had a seizure. He agreed with me and took me off the meds. My mri's continue to come back showing seizure activity and I continue to remain seizure free. My M.D. cannot explain why the tests show one thing, and yet I don't have seizures. I have not mentioned Morgellons to any physician due to articles I've read from Morgellons sufferers. I do not doubt that I have Morgellons. I have all the symptoms.
I have had a recent Brain Scam
Hello everyone, I am one of the many RNs with this dread disease. Early on, I had an MI scan done (head) that revealed lesions in the white matter of the brain. These could never be explained. I have always felt this was a significate finding in Morgellons Disease. Presently, I am trying to get a neurologist to review as many MRI scans as possible to see if there are any commonalities or other issues within them. If anyone has had a MRI Scan of the brain (head) since or even prior to contracting Morgellons and would be intersted in taking part, please send me an email at firstname.lastname@example.org. If this works out, there should not even be a cost since most medical facilities will send scans, reports, etc. to another medical provider at no charge to the patient. I sure hope this continues to be true. Please pass this request on to others who might be interested. Thanks! Sunny
Judy, There doesn't seem to be much going on here. Glad to see you're trying to stimulate interest. I am crunching on a time-sensitive project for The CEHF. Stopped to check this out when I got the email notice. Might want to direct anyone to our FB site and/or home page website for the present. Sunny
I am creating this new message in hopes of waking up this Community again. There has been much that has happened in the 5 years anyone has been here. So, before I go any further, I am going to wait and see if I get any response to this or if the group has completely died, like we wish M would.
I have put my theory and observations on Lymebusters.com - in order to be 'centralized' in one place. Here is the link to my thread, you can reach me there: http://lymebusters.proboards39.com/index.cgi?board=theories&action=display&thread=11709&page=1
I have a list of possible sources that we can individually or collectively solicit to help us diagnose what Morgellons is. This is a list of scientific research and analysis organizations, worldwide, that some will take your samples and give you a valid analysis of our pathogens. I have not approached any of these on this list at this time. However, by publishing this list - maybe we can find one of these organizations that will look at Morgellons and be the break through that we all need in order to better understand what happened to us. Also, we can list Doctors around the country that we can possibly go to - who are taking Morgellons as a real disease and get some help that way?
This thread is for those of us that are having trouble managing our Morgellons and need advice and to ask questions. A gathering place to voice whatever concerns you may have.
|Dr. Omar M. Amin's Parisitology Center Inc.||
Parasitology Center, Inc. has been working with Morgellons (hereafter referred to as Neuro-cutaneous Syndrome NCS) for over 15 years which Dr. Amin described from patients experiencing dermatological abnormalities (elevated itchy skin sores that may develop into mucoid lesions) and neurological symptoms (movement, pin prick or crawling sensations) caused by toxic exposures to a wide variety of factors. They provide a comprehensive and definitive evaluation including blood bio-compatibility testing, among others, and design a management program for individual patients' rehabilitation.
|The Charles E. Holman Foundation||
The Charles E. Holman Foundation is a grassroots organization that supports research, education, diagnosis and treatment of Morgellons Disease.
Ultimately, we seek discovery of it's cause and cure.
The Charles E. Holman Foundation exists to play an integral role in funding scientific research and spreading the understanding of Morgellons Disease to others.
The Charles E Holman Foundation is a 501(C) 3 Non-profit organization.
Our Mission: To create awareness and find factual knowledge about Morgellons Disease through:
>Funding and sponsorship of empirical scientific research
>Educating the medical community and the public
>Creating a patient support system
>Bringing accurate information to local, state and federal health agencies to enhance recognition for appropriate government action within their designated responsibilities and duties under the law.
Our Vision: We seek discovery of the cause and a cure for Morgellons Disease.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Created by kammy | Last updated 14 Oct 2014, 01:50 AM
Created by sunnyand7777 | Last updated 21 Dec 2013, 04:09 PM
Created by kammy | Last updated 26 Nov 2008, 06:35 PM
Created by kammy | Last updated 26 Nov 2008, 06:29 PM
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.