morgellons?

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Just today after taking a shower i noticed tons of dark blue fibers washing off of my skin, and after closer inspection i noticed my hands were covered in them as well as other parts of my body. does anyone else have experience with this? I don’t know what to make of it but im pretty sure this stuff is the source of my current abulia. any info would be highly appreciated.
 

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Hip

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Morgellons has been linked to chronic Lyme disease. See this article for example, and this study. So Lyme disease treatments might be worth looking into.

The fibers of Morgellons were found to be composed of keratin and collagen.

At one point I suspected I might have Morgellons, because the pathogen I caught seemed to trigger anhedonia (loss of ability to feel reward or pleasure from normally enjoyable experiences), which is a Morgellons symptom. But I never had any of the fiber skin manifestations.
 
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The anhedonia is the worst part. never experienced anything that horrible in my life. I’ll definitely bring it up with a doctor, and ive suspected lyme for a while now. have you tried treatment for it? id really love to get some relief from this
 

Hip

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have you tried treatment for it? id really love to get some relief from this
My ME/CFS appears to be linked to coxsackievirus B4 infection, so I don't think I have Lyme. I have tried coxsackievirus treatments like oxymatrine, but to no avail.

Lyme is hard to treat, high dose antibiotics are sometimes used, but I don't think there are many success stories.

Some people have found home mild hyperbaric oxygen (mHBOT) helps (after a year of daily sessions). Then there is a new treatment called disulfiram, which is thought to kill the Borrelia persister cells (these are the Borrelia bacteria which are not killed by antibiotics, because they are protected by biofilm).

Some people swear by the Stephen Buhner protocol for Lyme. This is a protocol involving certain herbs.


My own theory is that the oxygen from mHBOT may help kill the Borrelia persisters. Biofilm bacteria are protected from antibiotics by becoming metabolically dormant within the biofilm. This tends to make them impervious to the effects of antibiotics. But oxygen wakes these bacteria up, so that they can then be killed by antibiotics. This paper suggests this HBOT approach to killing biofilm bacteria should work.
 

Hip

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The anhedonia is the worst part. never experienced anything that horrible in my life.
I agree, it's a most horrible mental state. On paper it does not sound that bad, just a loss of the feelings of enjoyment or pleasure. But in reality anhedonia seems to affect the very core of your being. Some supplements which I found mildly beneficial for anhedonia are listed in this post.
 

lenora

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Yes, my understanding is that Lyme is incredibly difficult to treat with antibiotics (which had been the go-to treatment for years). I hadn't heard of the others, so let's hope it's good news. Sadly, I've yet to hear of a real success story but that would make sense if it truly is one virus "stacked" on top of another.

There are so many ways of looking at this, but I would definitely look into the info Hip provided. Best of luck...and please get back to us. Yours, Lenora.
 
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I agree, it's a most horrible mental state. On paper it does not sound that bad, just a loss of the feelings of enjoyment or pleasure. But in reality anhedonia seems to affect the very core of your being. Some supplements which I found mildly beneficial for anhedonia are listed in this post.
much appreciated. I can really relate to what you’re experiencing. at its worst I could’t experience any reward, motivation or emotions at all. it felt like
my brain was encased in some kind of gross substance that blocked dopamine from working. I also had dystonia, and at one point i could barely walk or move my hands or back because of how rigid they were. It’s starting to get better as i started on pramipexole and selegeline. I’ve also been supplementing with l-carnitine/alpha lipoic acid, NAC, uridine, b vitamin complex, and vitamin c. I’ve also lost a lot of physical sensation in my body, as well as taste and smell. I also don’t respond to stimulants anymore which is rough because I’ve been prescribed adderall/vyvanse/ritalin etc most of my life for adhd. hopefully we get through this and find the light at the end of the tunnel eventually.
 
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Yes, my understanding is that Lyme is incredibly difficult to treat with antibiotics (which had been the go-to treatment for years). I hadn't heard of the others, so let's hope it's good news. Sadly, I've yet to hear of a real success story but that would make sense if it truly is one virus "stacked" on top of another.

There are so many ways of looking at this, but I would definitely look into the info Hip provided. Best of luck...and please get back to us. Yours, Lenora.
Best of luck to you too!
 

Judee

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I can't find it right now but I thought I saw where anti-parasite medication is helpful with this.

I think it was maybe like Ivermectin or Albendazole. However, it was the pill form and not any type of cream that people were getting help from.

Wish I could remember where I saw that. :(
 

Hip

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I can't find it right now but I thought I saw where anti-parasite medication is helpful with this.

I think it was maybe like Ivermectin or Albendazole. However, it was the pill form and not any type of cream that people were getting help from.
I believe that might have been ivermectin. About decade or so ago, I was in touch with one of the leading researchers into Morgellons, and at that tine he said to me that ivermectin was worth a try. There does not seem to be much online though when I search for Morgellons ivermectin, nor Morgellons Lyme, so maybe it did not work out.
 
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I can't find it right now but I thought I saw where anti-parasite medication is helpful with this.

I think it was maybe like Ivermectin or Albendazole. However, it was the pill form and not any type of cream that people were getting help from.

Wish I could remember where I saw that. :(
I dont even know how to bring this up to a doctor. since i have a history of anxiety and mental illness, absolutey none of the doctors ive seen will take me serious. I recently got an official diagnosis of “somatic disorder” (lol) on top that’s probably the nail in the coffin as far as seeing normal docs go. So im not sure how id go about getting this medication.. I have seen that there’s a doctor who specializes in this, but she’s fine pretty far from where I live, so i might need to go on a trip to get this treated.
 

Judee

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I dont even know how to bring this up to a doctor. since i have a history of anxiety and mental illness, absolutey none of the doctors ive seen will take me serious. I recently got an official diagnosis of “somatic disorder” (lol) on top that’s probably the nail in the coffin as far as seeing normal docs go. So im not sure how id go about getting this medication..
I thought about this too. There seems to be a strong disdain for this condition in the medical community. I hate that. Why can't doctors start from a position of believing the patient and then work from there? I'm sorry. :(

I have seen that there’s a doctor who specializes in this, but she’s fine pretty far from where I live, so i might need to go on a trip to get this treated.
Can you see if she would do telehealth?
 
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I thought about this too. There seems to be a strong disdain for this condition in the medical community. I hate that. Why can't doctors start from a position of believing the patient and then work from there? I'm sorry. :(



Can you see if she would do telehealth?
I’m going to call and see what i can work out. if worse comes to worse I’ll just go out there. In the video i watched she mentions that she will talk to peoples doctors but they usually refuse to take it seriously. This whole thing is messed up, but what can you do, I guess? if you like i can link you the video I’m referring to.
 

junkcrap50

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Do you know if you have been bitten by a tick or bed bug? Do you have skin sores? Do you have a sensation of bugs crawling under your skin?

There is a website, I can't remember its name because use it was a decade ago, but probably really easy to find googling. I'll try to find it. Where there are a TON of pictures of the stuff coming out of people's skin: string filaments, lumps of stuff, etc. And even pictures of the byproducts under microscope. And they sort of classified the stuff into different group types. I remember the filaments but also these things like shards of glass - sort of blackish too like obsidian. There might be some info there and you could compare your skin objects to pictures if you're still uncertain it's morgellons.

And yes. I would not recommend you go to the doctors about this concern. They will call you crazy as moregellons is even more disbelieved than CFS. Only go to morgellons specialists.
 
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Do you know if you have been bitten by a tick or bed bug? Do you have skin sores? Do you have a sensation of bugs crawling under your skin?

There is a website, I can't remember its name because use it was a decade ago, but probably really easy to find googling. I'll try to find it. Where there are a TON of pictures of the stuff coming out of people's skin: string filaments, lumps of stuff, etc. And even pictures of the byproducts under microscope. And they sort of classified the stuff into different group types. I remember the filaments but also these things like shards of glass - sort of blackish too like obsidian. There might be some info there and you could compare your skin objects to pictures if you're still uncertain it's morgellons.

And yes. I would not recommend you go to the doctors about this concern. They will call you crazy as moregellons is even more disbelieved than CFS. Only go to morgellons specialists.

Yeah, I fee like there are bugs crawling around my body , spine and even brain. i have lesions, sparkly stuff,
black specks, crystals, and fibers coming out. strange popping sensations in mygums and head. I haven’t been bitten by a tick but this came on fast and progressed over the course of month. I also hear this buzzing sensation like flies inside of my ears. Also the movement is sometimes visible.. my hair will move with the sensations and sometimes there are indentations left on my skin after