posted
On our German Lyme-board today we had an avid and controversial discussion about the Morgellon-syndrome.
I for one think, this subject has to be taken very seriously, while the admin thinks, the Morgellon theory belongs rather to the category of "delusional parasitosis" and should not be discussed on a lymeboard if one wants to be taken seriously. There should be no connection between the Morgellon theory and Lyme in order not to lose public credibility - this is their conviction.
How do LLMDs and ILADS handle this subject here? Is it acknowledged as being real?
glm1111
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Sounds as ignorant as the ID docs who misdiagnosed a lot of people for years. Morgellons is just a name someone came up with and in fact most so called Morgellons people have been dx with Lyme disease.
IMO this is most likely the co-infection of Filarial Worms that Willy Burgdorfer found in the original ticks he dissected.
It is for the most part being overlooked sadly enough. I would have never suspected that the parasites pictured on
were inside of me until I got them out via antiparasitic herbs and salt/c. Dr. K. and some of his LLMD followers treat parasites/worms
before they treat any of the other co-infetions. What legit Lyme board would not allow this type of discussion?
How ignorant for anyone to think this belongs in the category of "dellusional parasitosis" when people are suffering.
This just really sounds like the IDSA.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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BoxerMom
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It is arrogant and dismissive to label ANY illness as psychiatric. More and more, illnesses that have long been considered psychiatric are being found to be infectious. Just because someone can't find it and culture it, doesn't mean it isn't there!
I can't believe this would happen on a Lyme board, as the medical system would love to write US off as hypochondriacs, another dismissive and infantalizing label.
All of the Morgellons patients I know are Lyme patients. They have disseminated filarial worms, for sure. But they also have another infection that creates the "fibers" that are definitive of Morgellons.
I previously thought the fibers were an infection of the worms themselves, like a fungus that lives in the filarial worms. But, it looks like the fibers live in the human host, itself. It is likely fungal.
The filarial worms are necessary for some part of the life cycle of Morgellons. Maybe the fibers need them to reproduce. Patients have reported seeing the fibers infect filarial worms and kill them. They wouldn't kill the primary host.
Morgellons is frightening and real. There is no standard treatment, though most ILADS docs prescribe antihelminths to kill the worms.
Do not leave these patients high and dry with no support. Do not let someone label them as delusional. We are fighting for credibility and recognition. Let's bring the Morgellons folks with us.
I was ignorant at first, I didn't believe this nearly microscopic fibers could be anything but clothing until I tried to burn them. No, they do not burn. They are mostly red and blue. Blue are the easiest to see with a handheld microscope.
These very same fibers are actually on myself. However, the one's I have found aren't burrowed in the skin and don't create lesions, so I would not claim to have Morgellon's. I do not know how they get there.
I do believe Morgellon's can be associated with neuropsychological illness, but I am skeptical that that is the infection causing the illness.
I am not convinced that it's all just Lyme and tick co-infections either. I think some infections may be opportunistic. I was watching the latest presentation from Judy Mikovits and the WPI, and it was interesting the 65/65 patients with chronic Lyme tested positive for XMRV. That's 100%! More than CFS. Also, I believe all lymphoma patients tested positive for XMRV, and it's known that Lyme disease can lead to lymphoma.
Anyway, there is a lot that is not know. I think it's ignorant to dismiss Morgellon's as a made up disease right now especially since the "CDC Investigation" has not produced the information they promised.
It's not surprising when studies find that drugs such as antipsychotics can help a patient (though this class of drugs sent me to the hospital). However, it's known that these medications may have potent psychoneuroimmuonolgical effects. Potential immunological effects are not discussed or are avoided, and the study author's then assume it's all in their head, because after all, the drug is labeled as an antipsychotic. Assumptions drive me nuts, and unfortunately, medical journals are full of them.
People on this forum embrace a lot of strange, alternative therapies. That is their choice, and I am not going to criticize their character for it. Whether many truly work or not, who knows. I for one, had great success with colloidal silver, and my methylation cycle started moving continuously after a laser energetic detox. I do make sure to not mention these things to practicioners that are too afraid to leave the pharmacetical/FDA box that they trapped themselves in.
I do think I know the forum you speak of, and just don't let their negative energy penetrate.
The western medical culture is generally too afraid to say, "I don't know." However, the doctor's that I had the most respect for were not afraid to say this. In my experience, these doctor's were also were more thorough and seemed wiser than your average doctor. Other doctor's tried to give me "peace of mind" by performing negative tests, and had nothing else to offer. Unfortunately, unless they could help fix me, there was no such thing as peace of mind.
Does discussion of Morgellon's hurt the credibility of Lyme patients? Most likely. But at this point, I don't think ignoring Morgellon's as a potential co-infection is a good thing to do.
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karenl
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you can google Dr. Staninger Hildegarde for information.
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posted
There are yearly conferences on Morgellons now. They should get the yearly proceedings. I don't have the time right now to find the url to the yearly conference but it exists.
I think the latest thinking is it may come from a soil bacteria that has crossed species, causing our bodies to create fibers like plants do! Research is ongoing.
Morgellons is a very serious illness causing much suffering that people can die from.
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momlyme
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Morgellons is very real and being played down in the medical community as "delusional parasitosis."
Some people regard wikipedia as a reliable source of information - I do not. Considering that many people go there to learn more about things and they come up high in the search rankings... here is what they have to say about the subject: http://en.wikipedia.org/wiki/Morgellons
A sad story for people suffering from this very real disease.
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posted
Scientifically, it doesn't add up to be delusional parasitosis. Putting aside the whole "Every chronic, 'strange', disease that was difficult to pin down was at one point thought to be psychosomatic" issue, delusional parasitosis tends to present MUCH differently for each patient. Morgellons does not - the "fibers" and sores are there and plenty of MDs and PhDs have gotten ahold of them to investigate their strange properties.
The fact that they are unable to be burned is one of the most perplexing. This suggests something way beyond simple pathogens (ie, with the exception of certain ultra-rare types of organisms that live in volcanic undersea vents, there are very few biologics that do not burn).
Some believe it to be something that crossed kingdom, possible some sort of agrobacteria that has adapted enough to infect humans instead of plants as a result of certain genetically modified organism. With this theory comes the idea that the strands are some sort of "plant" product like cellulose, but that doesn't necessarily explain the fire issue. Sometimes, Morgellons is related to or believed to be a component of the Lyme Vector Borne Infection Complex, but at the moment I don't think this serves anyone and makes both Lyme and Morgellons patients "look bad". Though I am sure that delusional parasitosis can be a symptom of Lyme due to its well known effect on the brain, Morgellons doesn't fit that bill.
Everyone who's anyone in scientific research has not come up with the exact composition of the strands, but I hope that research continues to help these suffering people. There is no harm in saying "We don't understand it yet, but that is why we're still working!"
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glm1111
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I just don't understand why this is being labeled as "Morgellons" when most of the sufferers have been dx with Lyme disease.
It is taking focus away from the original dx of Lyme disease. Why is this not being recognized as a co-infection and something that the tick was carrying?
When I look at the red and blue "fibers" pictured on lymephotos they look like worms. I have had them exit my head, mouth and nose and so have others I am in touch with.
Why are we so quick to follow someone who after finding them on their child decided to call it Morgellons after some other malady that no one knows the cause of.
Gael
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posted
glm1111 - There is no problem calling it a coinfection, but that certainly isn't its only property. For many afflicted, it is the "dominant" ailment. Its quite possible that it can be passed via a tick, but it is certainly its own infection.
Part of what troubles Lyme is that, despite common vector, the community (meaning ILADS) is just beginning to really separate out the various organisms that CAN be involved. Everyone's disease process is different. We can't just "call it all Lyme", or else we will have people continuously attempting to debunk. There are multiple organisms involved in many Lyme patients, but they are just that - multiple, not a fraction of Lyme itself as a condition.
There are morgellons patients that don't have any reason to believe its Lyme, and we don't have a clue about the organism causing it at the moment. Quite simply, worms aren't typically those colors and even if they were, they would burn under a blowtorch-level of heat or hotter. Morgellons fiber does not.
I believe with the knowledge currently available, it is a distinct phenomena.
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BoxerMom
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I've heard about the agrobacterium theory.
What's weird is that Morgellons patients describe these fibers as having qualities of living organisms that have survival needs. Like when they seek out and infect the filarial worms.
I'm not sure that they are plant fibers, but who knows? They are not like anything we understand. I can't wait until these things are identified.
glm1111
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If you look at some of the pictures on lymephotos you will clearly see eggs and larva that also exited with them. I find it difficult to believe that a fiber of unknown identification has eggs and larva as part of it's makeup. To me, this clearly indicates a living organism.
Listen, I love a good sci-fi mystery as much as anyone else (that would include UFOs, Aliens etc.) but because I have experienced this firsthand, I just don't buy some of the theories of mystery that is surrounding this malady.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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BoxerMom
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Patients and researchers are finding that the fibers are different from the worms.
They certainly have different characteristics.
I think if they were all nematodes, there wouldn't be so much mystery around Morgellons.
I know patients with disseminated filarial worms without the Morgellons fibers. Their symptoms are very, very different from the patients with Morgellons.
Morgellons adds an extremely complicated dimension to the filarial worm infestation.
nefferdun
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One of the LLMDs in CA treats Morgellons. Here are a few suggested sites to visit listed on her site. I know nothing about it. Hope there is no need for me to know about another pathogen in my body!
The Charles E. Holman Foundation: A Source for Morgellons Disease Information
The Morgellons Research Foundation
The Oklahoma State University Centerfor Morgellons Research
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METALLlC BLUE
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It's a very real disease. Anyone who denies it's real obviously hasn't seen a case of it.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
glm1111
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posted
I have a real case of it and had the lesions and the colored fibers exit from the lesions. I am still clearing some from my scalp, and what's exiting is EXACTLY what's pictured on lymephotos.
I have had a ton of parasites exit from every orfice and every lesion because of the aggressive protocols I am doing.
I have had Lyme and co for over 30 yrs and never would have guessed that this is part of what has been making me so sick.
So are my colored "fibers" different than what others are speaking about?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Gael, so you're saying that you have Morgellons? What a nightmare. How long? And did you get a hold on it? Were you able to eliminate it somehow?
During the discussion on our forum today it was repeatedly admonished, not to talk about it any more in order not to frighten or terrify other forum members. I think, we'd fare much better by looking it straight into the eye.
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BoxerMom
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Gael -
On Morgellons sites and forums, patients and researches post lots of magnified pics that look exactly like what is on lymephotos. So, yes, they have all the colored "threads," too. And eggs, larvae, other weird stuff. And, like you point out, it comes out everywhere. Patients most often culture from their urine.
But I think the fibers are different. I don't think everyone with filarial worms has the fibers of Morgellons. It does look like everyone with Morgellons has the filarial worms.
"Are the fibers another type of nematode?" is a million dollar question. It's possible. But we don't know.
glm1111
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kadee,
I was dx with Lyme, bart, babs and erlichia in 1999. I was on abx for 4 yrs including 6 mos of IV Rocephin. In 2005 I was still very sick and no longer had an LLMD.
I started to develope lesions on my back, tush and shoulders and scalp. I started on antiparasitic herbs and then salt/c when I found the lymephotos site here on lymenet.
The salt and herbs is what started to push these parasites out of the lesions, and other orfices and into the toilet.
I was pretty freaked at first and couldn't believe what I was seeing. I am concerned that people with chronic lyme maybe harboring these parasites and are not able to kill this infection with abx alone.
Really don't understand what other kind of fibers these folks are referring to. I have gotten rid of most of it, but am still getting rid of some smaller ones.
Gael
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