Hello from Arkansas

[fried okra]

Hi All,

Just thought I would introduce myself. I am a solo attorney in the northwest corner of Arkansas in a beautiful rural area. I have a family member who has more advanced symptoms than I and who is suffering a lot, and I may have mild symptoms. Just discovered the board, and believe it will be really helpfu to us. Thanks for any encouragement. I will research this as much as possible. Best regards.

[Sadsack]

Hello, Fried -

Funny your "name" should be okra - that is one of the good things to eat for this condition. It helps clear the colon.

Please feel free to ask any specific questions you might have.

It would be helpful if you can give a brief outline of your condition as well as that of your family member. Did this person have it before you, or did it just progress more quickly?

It's a tough thing to find yourself here, but since you are try to get as much out of it as possible.

SS

[fried okra]

Thank you for the welcome. My son and his wife and his now year-old baby had bites that they at first believed were a flea infestation. After a year of daily and extraordinary vacuuming, multiple time a day laundering, moving three times, and being advised that the fibers they were submitting for analysis were mere "fuzz," my son is now deeply worried and depressed about the fact that he now believes they have morgellons. I would prefer not to be too specific about other symptoms, including for myself, because I believe my task is for the moment to become better informed. But the board seems to be quite comprehensive. For myself, I would like to be directed to credentialed universities and labs that are taking this seriously and to understand the theories and science aiding the investigations. I notice there are some threads along these lines. Other than reluctantly admitting to some brain fog (not too good for an attorney to admit to!), that's as specific as I would like to be right now. Thanks for all your attention to and care for persons who are suffering and need help.

[Sadsack]

Dear Fried -

The only University-affiliated PhD (not an MD) doing research in Morgellons is Dr. Randy Wymore at the Univ of OK at Tulsa. He does not do treatment. To see pretty much everything about his work (or anyone else's for that matter) go to "Zoominfo" and enter his name for associated links.

Unfortunately, research into this condition is very slow. As you probably know, the CDC is 20 months into a poorly funded "investigation" into Morgellons. Kaiser-Permanente in N. CA was awarded the $338,000 to conduct the initial part of the investigation, and now all the samples and data is in the hands of the US Army Lab (10 months now). A Freedom of Information request was recently filed to try to get any information about the study but final response is pending at this time.

There are three main approaches to treatment of the condition. The first is traditional western medicine. The most prominent provider is Ginger Savely in San Franscico, who practices with Dr. Richard Stricker. She has one patient who has been symptom-free for three years. In general, this approach has not been very successful and is largely experimental.

The second approach is using natural, non-chemical methods. The most famous practitioner in this area is Dr. Hildegarde Staninger in LA. I have been her patient since Jan '08 and am 98% symptom-free. I have been in touch with many other of her patients who are also doing very well. Her approach uses supplements as well as devices, such as FarInfrared treatment, diet, etc. Each protocol is tailored according to the results of extensive bloodwork.

The third general category is really a combination of the first two, and is usually what we, in this and other groups, have developed according to what we have read and what we find is working.

There are other doctors here and there who try to help, but I cannot speak to their methods or success. Most of these other doctors are Lyme-literate MD's, though I know of three docs in FL - one an Infectious Disease, one a Family Practitioner, and the other I am not sure of (except that he doesn't take insurance and charges $1,000 for an office visit!!!)

Dr. Kolb is Atlanta, GA, is a plastic surgeon who has a lot of patients with Morgellons and many with Lyme. She offers both natural approach and traditional approaches.

BTW - I know a trial lawyer in MD who could barely function at one point and nearly lost his practice. But he is now doing quite well and in full swing with his practice.

Good luck.

SS