Post by betsy on Jan 23, 2008 2:16:43 GMT -5
Dear Representative ___________,
My name is_________ I reside in Southern California . I am a retired public school teacher with 36 years experience. I have been asked to address my involvement with Morgellons.
On January 18, 2005, after substituting all day I was called to the bedside of a very sick friend who had previously been in and out of the hospital. To skip all the details to the critical event, I used alcohol on a washcloth to soothe his abdominal rash and then bent to kiss him on the forehead.
Bingo. That night I had crawling all over my scalp, face, eyebrows, eye lashes, up my nostrils and in ear canals. I didn’t substitute the next day; I didn’t know what I had, but I didn’t want to give it to the kids.
Within a day or two I was treating for scabies because the diagnosis for my friend who was now back in Kaiser Hospital had changed from “medicine rash” to Norwegian scabies, and therefore contagious. Indeed, his same hospital room changed from normal designation to “contagious” overnight. Caps, gowns, and masks were now required.
Due to the crawling and my exposure, I started treating for scabies even though I did not have significant eruptions. Within a short time, the picture changed. My back broke out in a rash after the car seatback attacked me. Yes, I screamed out loud in the car as needle-like jabs went into my back while driving to Long Beach Memorial Hospital to fill a prescription for Ivermectin. I now believe the car was infested from carrying my sick friend as a passenger. I had just removed the plastic trash bags that were protecting the seats from contamination. Evidently the seat had already become infested.
I had a bad reaction to the Stomotol or Ivermectin prescription so I couldn’t take more. I continued with the weekly scabies cream applications head to toe, until my doctor told me to stop or I’d fry my brain. She said use Vaseline to smother the crawling. She didn’t know what was wrong but she didn’t think it was scabies. Likewise the dermatologist didn’t find scabies nor did it show up in a biopsy. She referred me to an infectious disease doctor who also didn’t know what was wrong and referred me to UCLA Dermatology.
I had to wait several weeks for that appointment. Meanwhile I saw an eye doctor 2 times, 4 local dermatologists, another infectious disease doctor, a public health nurse, a nutritionist, a psychologist and an alternative medicine practitioner. By the time the UCLA appointment date drew near I had to cancel. I was feeling too weak to cope with the drive across town.
This infestation had been going on for two or three months. I was exhausted following the laundry protocol for scabies or whatever contamination this was turning out to be. I had no washing machine in my building so I had to go to the laundromat daily with all the bedding, towels and clothing. I was also exhausted from dealing with a contaminated environment, the black specks, the white specks, the fibers. I started keeping almost everything in plastic bags. In fact I became the queen of plastic. I also had to cover open beverages and food and stopped preparing meals at home.
Meanwhile, I had daily crawling episodes which drove me to tears, a rash on my back that kept spreading and eventually covered the entire torso in the front and back and lasted for several months. In addition, my hands were infested to cause me to wear disposable gloves to eat, take vitamins, bathe and handle other sensitive bathroom issues. There were lesions on the hands, grooves being eroded into the fingers and nails and tiny hairs growing out of every pore of the fingers. One thumb joint was swollen the size of a half marble. I continued to have episodes of the stabbing needle attacks in various parts of the body. My feet were so infested that I wore cut down plastic bags over my socks inside the shoes so I wouldn’t have to throw the shoes away regularly. I was already throwing socks away daily. My legs broke out in red splotches. Due to all the stress I lost 20 pounds and now weighed 106. I was ready for a hospital or a hotel. I chose the hotel.
Meanwhile, just before fleeing to the hotel, I saw an alternative medicine practitioner who determined I had a parasite. He used rather strange methods to arrive at his conclusion, but I didn’t care; I was desperate for help. I began taking Oriental herb teas he made (which seemed to help the crawling) and spraying my body with special solutions several times a day. I fled to the hotel taking all my remedies with me.
So now I was living in a modest extended stay hotel, and driving a rental car since my vehicle was contaminated. I was concerned about not contaminating the environment or infecting others. I was alone and lonesome with a medical problem I didn’t know how to resolve. I thought I might have Morgellons which only made me feel worse since no one knew how to solve that problem either. I remember several times sitting outside on a driveway curb and the tears just rolled down my face.
While I was living in the hotel, I worked to strip and decontaminate my apartment.
Clothing, linens, furniture, carpeting, food, spices, vitamins, toiletries and bed all had to go. Then I hired someone to treat the walls according to the protocol suggested by Dr. Schwartz, author of Lisa’s Disease, Fiber Disease.
After 5 ½ months I was finally able to move back to my apartment. It’s a good thing as I was running out of savings. About this time, the public health nurse sent me an article mentioning a West Coast Lyme practitioner who was seeing patients with Morgellon symptoms. I made the appointment, got some of the lab work, and flew to San Francisco for the consultation all out of pocket. At the appointment I learned that my test results and evaluation indicated I had chronic Lyme. I was shocked. I also scored approximately 50% on the Morgellon symptoms check list. The practitioner prescribed antibiotics for Lyme as a way to treat Morgellons.
In all the United States , there are just a handful of doctors who recognize or treat chronic Lyme. Frequently one has to travel a very long distance for appointments. Likewise, it is even harder to find a doctor that has heard of Morgellons let alone has any idea how to treat it. Keeping this in mind, I have not made a lot of headway in treating either condition.
The whole Morgellons experience has been traumatizing not to mention terribly costly. It also caused great isolation and consumed my life. In addition, it may have taken the life of my friend who died 12 days after being readmitted to the hospital. It would be nice to say at least it was now over. Unfortunately I still have lingering symptoms which cause concern. I have a lot of unanswered questions about what might be happening internally. We can only hope these answers will come.
Sincerely,