Morjella

The Magazine for Sufferers of Morg, Lyme and More
Subscribe

May 2012 Report

April 09, 2013 By: kajay Category: Tips

There are several places to find support and information from other sufferers. The best I have found is birdmitesorg. There are others, but that is where I would start. I also have a comprehensive list of resources and best practices at Morjella: the Magazine for Morgellons Sufferers (aka body bugs).
Go join that group and jump into the conversation. Don’t worry, we’ve heard it all, complete with the emotional aspects of what you are going through.
There are those among us who have gotten well. Those most recently infected recover most quickly because the infection is less established in their bodies. I was infected in 1988 and only now am beginning to see the light at the end of the tunnel.
This has been a learning process. Dissed by the medical profession because of a poorly researched 2001 article they take as gospel (Delusory Parasitosis [DP] by Nancy Hinkle, a veterinary entomologist at University of GA) because it is published as “truth” in the trade encyclopedias of three professions whose help we need and consequently do not get: medical doctors, including dermatologists; pest control operators (PCOs); and entomologists themselves, we have had to do our own research and development – uninsured and unsupported by the previously mentioned key professionals and as a result, unsupported and often cut off or prevented from seeking care by those who love us and tell us it is for our own good–or, like the docs and PCOs, they say it is all in our minds. Everybody wants to send us to a shrink. Well, this will make a person crazy, and crazy people are not immune from getting it, but we do not get this because we are crazy. While I recognize the legitimacy of DP or DOP, as it is also called “delusions of parasitosis,” that is definitely not what I have myself. What I have bites me and leaves bloody holes in my skin. I carry a styptic pencil (like men use when they cut themselves shaving) to stop the bleeding. They are cheap, so I keep one wherever I spend time: home, car, office.
Morgellons is now considered a strain of Lyme because it is vectored by insects or mites or ticks, thus it can be counted among tick-borne diseases.. Many who have Morg also have Lyme and find their solution through a Lyme literate MD (LLMD). For this reason, the second Yahoo group you should join is your state’s Lyme group, for example, AlabamaLyme, GeorgiaLyme, WisconsinLyme.
I have lucked up and found an LLMD I like in a nearby state, and he has diagnosed me with Lyme and put me on minocycline, an intracellular (within cell) antibiotic he says I might have to take up to a year. I am lucky. Probably because of the evening primrose oil I have taken for many years, first to control menopausal night sweats and other symptoms, and since for allergies, I have never had brain fog. I am lucky. Most have it.
In addition I am using products from Big Island Skin Care called Enzpire or F-8. I mix the powder in water to spray on my skin and from the day I started using it Mar 2011, 14 months ago almost, I have not had lesion one. Still have the rest, though. I also take the capsules, a different enzymatic formula. There is more but everything I know is published at Morjella.com, but you will find much more at birdmitesorg.
I have also found several things (all published at Morjella, just look through the categories to see what is there) that have made my life easier during the recovery process.
The bottom line is, I believe you, others with this will believe you, and you can get well. Make sure when you ask questions to ask people to tell you what got them well, and whatever that is, that will give you a start point.

Leave a Reply