Hi Hope, Most of us that suffer from Morgellon's disease have had horrible experiences with DR visits, mine were demeanoring, embarrassing, confusing and then I was called paranoid and delusional, then I was told that I was doing this to myself. Most have had the same experiences, as for the tests, O&P along with skin biopsy showed nothing, confirmation that I was delusional.
I have not had any formal medical training. As for personal experiences with others using the same treatments as those used by myself, there have been a few.
You asked what research,...Entomology, Mycology, Ethnobotany, molecular Biology and Chemistry. Morgellon's disease requires that anyone researching it's cause and symptoms will need to have a general understanding of all these areas of study.
Initially I found clear threadworms in a stool that was so full of them that it was alarming, the next day the same mess exited from my genitals, an amount equal to 1/2 cup. So far none of the clear larva have been found to be in any research articles nor in any Peer Reviewed journals.
The many different things inside us require anthelmintic therapy from more than one type of dewormer. Safeguard fenbendazole 10% Equine paste has proven to be the most successful anthelmintic and the one with least side effects. It would require 60X the dose that I use before a possible overdose could occur and even then, it can't be said that a problem would occur. Each individual is a bit different, so anyone using any drug needs to listen to their own body and what it is telling them.
The Equimax dewormer is Praziquantel 14% & Ivermectin 1.78%, this set of drugs is a bit harsher than the Fenbendazole but is necessary to use for those with M. I've seen women eat a whole tube of Equimax at one time. One lady had the worms in her brain and we had seen the nodule as it moved to her brain. Here face was swollen and she was in bad shape. The heavy dose of Equimax took care of her brain invaders but she scared when the mess moved out of her head. She had a mini stroke or a light seizure and passed out in the yard. It was over quickly and she made a wonderful recovery. In hindsight, she need to have stayed at home with a monitor such as myself. It's a fine balance when working with someone as sick as many are and with the responsibility that one assumes when advising them as to treatments. Pamoate pyrantel paste can be added to the equimax paste each day as it makes the Prazi and iver mix much more effective. Do not drive, make sure someone is close by that knows your plan and remember to keep the stool loose with something like ice cream, which has fat in it and that may be necessary for the dewormers to attach to. Olive oil, grapefruit sections and other things also help. Morgies have a large mass inside their small intestines and things attached to the intestinal wall, inside the large intestine. All organs are usually infested with black fibers, short and pointed on each end, other insect life forms, fungi and arboviruses. M sufferers do not have bacteria issues unless they have a secondary issue such as a tick bite.
Most sufferers that do the anthelmintic therapy will need to pulse the treatments, such as five days on and 10 days off, or more but some don't stop until all internal issues have cleared. I've seen some of the latter discharge as many as 16 lbs of unwanted things from all orifices and some that weren't exits, such as the tongue and eyes, saliva glands, belly buttons, skin, ears, nose, and anywhere the things decide to leave from. You can place a lettuce strainer, the old aluminum type or a self made screen over the toilet so that you can see exactly what you were holding inside you. I use coffee filters and an old filter holder for urine samples. Gross but after 3,000 of these traps are checked, one gets a good idea of what needs to leave his or her body.
I clean strain and place in alcohol all my artifacts unless I am intent on growing the sample, which I can and have done. That's another story.
I hope that I have properly answered your concerns about any knowledge that I might possess. Perhaps I know nothing. morgellon's research and treatment certainly is humbling, for the numbers are astounding and the level of suffering is often unfathomable.
Many never make it back home, I suspect they didn't ever find any help. I hope to prevent this outcome from happening to anyone else and there are others here that are simply doing all they can in order for the suffering and death to be stopped.There are also too many sufferers being locked up and forgotten about. mental institutions are no place for treatment of this disease.