Morgellons Disease Support Group

Morgellons or Morgellons disease is a controversial name for an alleged polysymptomatic syndrome characterized by patients finding fibers on their skin, which they believe are related to other symptoms, including intense itching, skin lesions, as well as a wide range of other chronic symptoms. These symptoms are occasionally accompanied by the belief in an infestation by...

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“Blood worms” under skin - how do they go away?

Jodisred
Jodisred

I have sores on my tounge, inside mouth and face that expell what I call “blood worms” (thick plastic feeling sacks of blood, some with black specs).  I was wondering how these disappear. When an area starts healing I can still feel that sack/like object under the skin. 


Does the discharge go away with treatment or do they have to be removed?  Some of them are hard and feel cyst like. I’ve just been diagnosed and starting treatment but I’m concerned about how they subside. Do they start to dissolve over time or do they push out through my skin?


I haven’t been able to have a detailed discussion with my Dr yet about this specifically so I thought I’d reach out to others with this mess. When I was picking my skin, I pulled out some scary pieces of this stuff. I know I can’t pick but the area did smooth out after I’d get one out. 


Id like anyone’s feedback 

Parisapple
Parisapple
It's best not to pick or tear at your skin, but you already know that :) We are all trying to find a cure for this hideous disease. When you go to your doctors, you might want to bring him or her some recent literature from PubMed. Anything older than say 2016 will simply say that we are psych cases. And, don't be surprised if your own doc tells you to seek psychological help. But YOU are not crazy. I just realized, after going to 9 different doctors what this is. Most just walked out of the room. Don't give up.
Jodisred
Jodisred
I really appreciate your reply. I’m past the “you’re crazy” stage...15 drs in 5 years with no diagnosis. Due to open sores on my face all 4 Dermatologist told me I was mentally unstable and somehow created this mess.
The dr I noted is a Lyme/Morgellon specialist and I’m receiving correct treatment but, so far, nothing is effectively treating the areas that are deep on my face. Areas are either rock hard or I see fibers literally knotted under my skin. My mouth feels “sewn shut” in areas.
The dr said the treatment would help, which is true for my body and mind, but nothing has even made a dent in the sores on my face which leads me back to my questions about how these fiber filled areas disappear. I get more depressed as time goes on and I see no change.
IrieK
IrieK
What is the treatment the doc has you on?
Jodisred
Jodisred
Hi. I’m seeing a Morgellon/Lyme specialist. You can find one ☝️ n your area on the Charles holman foundation.
I’m using EVERY over the counter suggestion in Ginger Savelys new Morgellons book and they work. The dr has me on a heavy vitamin/supplement program and 4 antibiotics that alternate over an 8 week schedule. I see him at the end of the 8 weeks for the next steps. They also tested me for metals because they slow healing and I have a high lead reading that has made things worse. I’ll be treating that too. Happy to answer any questions because it works!