Human Anatomy, Physiology, and Medicine. Anything human!
This thread is dedicated in loving memory to my virtuous and valiant
friend and fellow victim of the Fiber Disease,
Travis Allen Wilson.
December 29, 1982 – April 23, 2006
We carry on in your honor, rest in peace.
With much love and sorrow,
My family and I are afflicted by the insidious disease that people call Morgellons. We have suffered from this disease for a long time as it has managed to go by undetected and misdiagnosed by many doctors. We are being refused treatment of any kind even as I write this and our health continues to deteriorate at a rapid speed.
This fiber disease has turned my life into a surreal nightmare that defies rational thought. It is by far the most bizarre and hideous disease that I have ever even heard of not alone had to endure. My life could very easily be made into a Hollywood movie and someday may well be, but for now I will continue to look for help in getting treatment, work for advancement in research, and help with public awareness.
If you’re not scared yet then you very well should be as this is an ambiguous and evasive killer that no one yet has been able to determine its means of transmission. The fiber disease is spreading among our population and your doctor cannot even detect it. Most have never even heard of it and some deny its very existence.
If any of you here can help to guide this desperate Mother to alleviate this condition I would be eternally grateful. I am searching for answers any where I can and am asking for your help.
April 30, 2006
I am posting this update because I feel obligated to caution anyone who reads this thread to be extremely critical of all information that it contains. To anyone that may be new to this disease or its name, you may find this thread very confusing to say the least.
A few leading, predominate, fact based, and verifiable people in this field who have done legitimate scientific research on this disease have contributed to this thread and should be recognized as such. This includes Dr. Schwartz, Dr. Martin, Cliff Mickelson and our new scientist Tamtam. Special thanks to Dr. Wymore who addresses my personal questions in form of an open letter and shares his most current and up to date research. I thank all of you for once again for helping and you are all to be honored.
Initially I came here to ask for assistance from people who frequent this forum and did receive this. Thank you Biology-online.
This thread has become a perfect example of how desperate the suffers are for some answers as to what is happening to them and how overwhelmingly crazy it is to have to shift through what is real and helpful and what is misleading and dangerous. It is very sad.
It also shows the way in which this disease is too often presented and one can very easily see why medical professionals are reluctant to get involved in anyway. At this point, I cannot blame them as I would do the same and not give it another thought if I were not infected. Again, very, very sad.
The unfortunate part in all of this is that the Fiber disease is real. I cannot see how a doctor or anyone else who does not live with this disease is able to differentiate how to tell legitimate cases from people who suffer from mental disorders. Unless you are infected by this or are able to recognize it, the borders are highly undefined and seemingly are often intertwined. Perhaps this is the very reason it is so difficult to get help and hinders any further research developments.
I wish to close by once again thanking any individual who has taken the time to think about this medical anomaly and ask you to please remain open-minded.
I have no doubt that this disease will affect many people in the future in one way or another, remember me. Until then know that I am still a desperate Mother that will not give up on the search to help my family in finding treatment and HOPE for a cure for this horrific condition.
Last edited by Sabrina on Tue Jun 06, 2006 5:04 am, edited 5 times in total.
Here is what one research doctor says about this and so far it has been the most accurate information I have found that describes what we have.
We don't know how to treat this and it makes AIDS look like a walk in the park.
Please view this link.
http://www.s3support.com/Alternativecel ... asitic.pdf
Ok, Am I shaking foundations here or do you all think I’m crazy?
Doesn’t anybody here have one thing to say about this? Anything???
There are thousands of us that all display the same exact symptoms in every state in America and even in some other countries as well.
Because of the nature of how this disease acts, we believe that we are very contagious. The CDC has failed us and is allowing this to spread rapidly.
Many of us test positive for Lyme disease and nobody knows why. I am proof of this as my test was positive as well as family members of mine.
Is anybody here even curious about this? For God’s sake, WE GLOW!
"How can these unknown fibers be described?
The unknown fibers associated with skin lesions can be described as coenocytic (aseptate), smooth-walled, branching, filamentous objects. The fibers have been analyzed by FTIR (Fourier Transform Infrared Spectroscopy) and have tentatively been identified as cellulose.
The elongated fibers are often twisted into balls or what appear to be bundles of fibers, as they grow within the skin. Many people refer to these bundles as fiber balls, fuzz balls, or lint balls. The fibers are clearly hyphae-like structures, and yet, due their immense size (150 microns wide), they do not fall within the description of known hyphae or pseudohyphae. The fibers are most often white, but are also consistently seen as blue, black, and rarely red. The fibers exhibit a high degree of autofluorescence and are not textile derived."
“Cases of this disease have been reported to this foundation by people living in all fifty states in the U.S., as well as fifteen nations. The majority of individuals reporting symptoms of Morgellons Disease reside in California, Texas, and Florida. Distinct geographic "cluster" areas of this disease have been noted near Los Angeles, San Francisco, San Jose and San Diego, California as well as near Houston, Dallas, Austin, and Round Rock, Texas.
Physicians treating patients with this disease, believe that it involves either a novel organism, or a known organism acting in a novel way. This organism has been difficult to identify, but many physicians report that it appears to infect some individuals whose immune systems have been altered by Lyme Disease, also known as Borreliosis. The percentage of people with Morgellons Disease, who also suffer from Borreliosis, remains to be seen. One physician who has treated a patient with symptoms of Morgellons Disease, believes that the etiologic agent of this disease is Stenotrophomonas maltophilia, a resistant bacteria which can contaminate water. Another physician believes that Morgellons Disease has a viral etiology. It seems clear that, until public health agencies properly investigate this situation, the cause of this emerging illness will remain the subject of speculation.”
Yes, unfortunately I do. I have been having some results with the current treatment of high doses of Septra and Cipro. Nobody seems to be able to figure out if this is a bacteria, fungus, or virus as it displays qualities of all of them.
If it were just me being affected by this I would have thrown in the towel a long time ago but, my child has it too and I don’t have a clue as to what I am dealing with. All of the doctors are completely stumped and nobody wants to treat it because they don’t know what it is. I can’t even get a doctor to send a sample of this stuff to the CDC and they won’t accept samples unless they are collected by a physician. I don’t know what to do. Any ideas?
Fiber Study link
http://lymebusters.proboards39.com/inde ... 941&page=1
This is very new, and most of us have probably never heard of this disease. I think that's why nobody can answer you.
I think you shoul try to get in touch with some of the researchers that begun to study this. Maybe they can help with the CDC too.
"A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort" - H. Albright
If your family members have it is there a genetic link or is just because you are living close together and its infectious?
Obviously we seem to have established thats its an organism but could there be something genetic which means you develop these symptoms when exposed. Immunodeficiency.
If it is an organism which is in the water then has anyone ever got better when they have moved house. Have you been on holiday and its got better. Maybe worth trying.
I've just been reading about Stenotrophomonas maltophilia (Which was mentioned above somewhere). It says here http://www.ascp.com/public/pubs/tcp/200 ... nage.shtml
that mortality rates are high. Had anyone died as a result of this disease? Maybe infection.
It's always funny until someone gets hurt. Then it's just hilarious.
Dear iri black,
Thanks for your advice. I have been in touch with some of the researchers and unfortunately they can’t help. No body is funding their work so much has yet to be discovered. We desperately need the CDC to do their jobs.
“This is very new, and most of us have probably never heard of this disease. I think that's why nobody can answer you”
This is also why no doctor will treat it either. What’s it going to take? It has become my job to educate doctors and if you know the kind of ego's that many doctors have, then you must realize what I'm up aganist. I still cannot figure out why the CDC has not started to quarantine people!
Thanks for providing that link.
One chemist that came down with this has helped us look for some answers. He believes that it is genetically related as well. This is what he had to say about that.
“Well it seems there's been a LOT of research on the genetic implications of Lyme disease and corresponding affects on the immune system and subsequent response to antibiotics.
Basically the bottom line is IF you have the HLA-DR4 genetic marker you become a "problem" for antibiotics alone to cure you because this bacterium or bacteria (I think we're dealing with more than one type) mimics our immune system and is able to "hide" so unless you do a prolonged course of antibiotics (like the Marshall protocol) you'll never beat this because antibiotics DO rely on your own immune system to kick in when the bacterial count gets low enough. If it mimics your body's immune system, it can hide out indefinitely and thus we have chronic cases of Lyme disease.
How do we beat this then?
Dr. Schwartz proposes a gram negative bacterium with flagella called Stenotrophomonas maltophilia. Most with Morgs are testing positive for Lyme disease too caused by a gram negative spirochete acting in a viral manner called Borrelia burgdorferi. All I know is that ciprofloxacin will beat BOTH but I needed a way around the immune system mimicking. Thanks to Victoreah I think I found the last piece to the puzzle that should be the answer.
There are two gluconutrients that biochemists have isolated from the Aloe Vera plant called mannose and galactose. The marketing groups are touting "8" necessary gluconutrients but that's a bunch of marketing BS - all you need are those two. Basically the bind to cell receptor sites allowing for improved intercellular communication. The same sites the bacteria is trying to use to block immune response. Flood your system with these and suddenly the bacteria have no where to hide!
I believe the cure for Morgellons is a combination of Ciprofloxacin and mannose/galactose. I don't know what dosing or duration nor where to get the mannose/galactose combo (current gluconutrient packages seem to be multi-level marketed and are thusly WAY overpriced) so I will pose that as a challenge to other forum members here to find out for us. I have racked my brain way too hard over the past 48 hours coming up with this hypothesis but I think it has a very real chance based on sound science.”
”The HLA-DR4 genetic marker. Without it you're basically immune to Morgellons. With it you can be infected because it mimics that gene code and your immune system won't fight it. Don't believe me? Have your doctor check for it - it's found in 90% of chronic Lyme disease patients. It's not a mystery any longer.”
I’m not completely convinced of this yet. Nobody really has a clue how this is transmitted.
Moving does help some but is not the answer and this is because this gets in our environment. It also comes off of our bodies so I don’t think the water is the biggest factor here either.
You guys, I’ve never been so scared in my life. I have no science or medical background what so ever and I’m grasping at straws every day. Thanks for your help.
Last edited by Sabrina on Tue Jun 06, 2006 4:55 am, edited 1 time in total.
Looks like Aloe Vera might be worth a try. You can buy it in various forms. I tried a cranberry flavour drink containing aloe vera not too long ago. (mainly because it was half price ). Its supposed to be good for skin. I have eczema and in some ways know how you feel (I know NO ONE can really know how you feel.). Even with something like eczema doctors still didnt have a clue what to do with me sometimes. I was in a right mess. They just kept prescribing me the wrong stuff. it was only when i went into hospital that i saw a specialist who knew what medicines to treat me with. Back to helping you...
As this disease affects your skin and is linked to the immune system Aloe Vera may help. Look for it on special offer or buy it online, where it might be cheaper.
You could obtain mannose and galactose from other sources, but if both of them are in Aloe Vera then i'd take that. If nothing else, Aloe Vera is going to be good for you. As for dosing and duration. Take what it says (probably the larger dose out of the options) and your going to have to take it for at least a few months as these things can sometimes take a while before you see an effect.
Some info about Mannose and which foods contain it:
http://www.innvista.com/health/nutritio ... annose.htm
and galactose (Milk seems to be the best source because it contains lactose which is hydrolysed to glucose and galactose) Altough diary products and lactose can cause immune reactions, allergies etc (but thats another story)
http://www.innvista.com/health/nutritio ... galact.htm
Can you answer a few questions about Lyme disease? How did you or your other family members get this disease? Because I have always thought it was trasmitted by ticks.
It also says on Wikipedia that Lyme disease may be transmitted sexually. Which you mentioned. so i'd check this out.
It's always funny until someone gets hurt. Then it's just hilarious.
Thank you very much for those links! Very helpful. And I’m sorry to hear that you are suffering from a skin condition too. I’m glad you finally got the correct help as I know how frustrating it can be.
Many people are seeing good results with the aloe juice; I’ll get some very soon and see what happens.
As far as Lyme goes, only the best labs (Igenex and Bowen) with the most sensitive tests are able to pick this up.
We don’t know if it is actually Lyme at all, or if they are just detecting an aspect of Morgellons. It very possible that Morgellons causes Lyme, or visa versa. Only professionals like you guys can figure that stuff out. Yes, Lyme can be contracted sexually although doctors don’t seem to be aware of this fact for some reason and the general public hasn’t been told either. Apparently this is not the only way to catch it since my child has never had sexual relations. I didn’t know anything about this disease until I recognized the Morgellons symptoms, but found it pretty easy to learn about it and thank God I did.
“LYME DISEASE (Borreliosis)
A Plague of Ignorance Regarding the Ignorance of a Plague
© Copyright 2004, Dr Scott Taylor, DVM, All rights Reserved”
My child’s “top notch” doctor had misinformed me and told me Lyme could not be passed by breast milk. Well, all it took was one look at Igenex’s website to see that not only is it detected in breast milk, but semen and various other tissues. When I called their 800 number, they also told me it can be passed invetro. I can’t figure out why I know this information yet Infectious Disease doctors don’t. I’m no proffesional
nor do I have any kind of real medical knowledge, for Pete’s sake!!!
Where did we get this? Well now that’s the million dollar question and I’d have a Nobel Peace Prize if I knew the answer to that one!
I was stationed in Connecticut when I was in the Military and it is right next to Lyme County. Maybe there??? I don’t ever remember being bit by a tick and I’m 98% positive that my child never was either.
One strange aspect to the Morgellons is that this stuff acts, and can feel like an actual bug! It can jump from one person to the next. Strange, I know but it’s true. I have seen this under a blacklight. It can be felt also but is not visible until the Ultraviolet light is on it. This creates many problems for people suffering from this as doctors, family members, and friends can’t see anything on us and most people don’t know about the blacklight technique. When I have showed this to doctors, the only reply I get is the same exact one. All they can say is, “I’m not sure what I just saw” and then they send us away. Yes, I have to pay good money just to hear that. I am one of the 5% of people with this that has managed NOT to get the DOP diagnoses and I believe this is why. I’ve been able to show them how to detect it and what it looks like, not to mention what drugs are being used to treat it. Don’t know why I am the chosen one but I really don’t want to have to inform doctors, I need them to know more about this than I do. Here is some more background.
Now, I do know that some bacteria can produce this type of phenomena but I know this is still not it.
http://www.curie.fr/upload/presse/cellm ... y02_gb.pdf
It is my belief through personal observation that this can and does infect other people by “jumping” on to them. This is just one more reason to take this disease very seriously. What is wrong with the CDC????? Why are they allowing this to spread? Why is the medical community clueless?
I know you guys don’t have all the answers for me but maybe someday you will. Thanks for taking the time to look at and ponder my dilemma. Thanks for being open minded too.
Last edited by Sabrina on Tue Jun 06, 2006 5:14 am, edited 2 times in total.
Thus, the controversy……
“Plum Island is a legend, but not a myth. Just off Orient Point, Long Island, and six miles from the Connecticut coast, Plum Island is the site of a United States Agriculture Department Animal Disease Research Center. The USDA acquired the island from the War Department at the end of World War II with a charter from Congress to study animal diseases such as Foot and Mouth Disease. In surrounding communities, distrust of Plum Island runs deep. Lyme Disease takes its name from a Connecticut town across from the island: many wonder whether birds or swimming animals could have brought the disease from Plum Island. Some suspect this might be the case with West Nile Virus as well. Plum Island officials, of course, dismiss such hypotheses as fantasy.”
http://www.gene-watch.org/genewatch/art ... sland.html
“Apparently the first appearance of what we now call Lyme disease a mere 13 miles northeast of the facility falls under the category of coincidence, as does the mysterious and still unexplained appearance of West Nile virus in Long Island and New York City.”
Here it is.
And it’s everywhere now.
"Lyme disease has been reported in 49 states and on four different continents. In 2002, there were 23,763 new cases reported in the U.S. Between 1996 and 2001 the number was level at about 17,000 new cases per year, but increased by nearly 7,000 cases in 2002. See Figure 1 below from the CDC."
I have heard it said in a news broadcast that Lyme is now spreading faster than AIDS. I don't know if this is true, but that's what they said.
I am very happy to see that you find this intresting!!!! I hope more people with take an interest so we get some help!
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