Living with Morgellon’s DiseaseBy

David T. St. Albans 05/31/2009

Synchronicity has always been a facet of my life. At times it can be rather surprising how things work out in just such a way that makes the event seem both positive and meaningful. In 2007 I had written an article on Morgellon’s disease for a small press magazine called The Gate (a small-press magazine which is dedicated to various paranormal phenomenon and weird news from around the world. It is a smaller condensed version of Britain’s famous Fortean Times). Usually I do illustrations for The Gate (now called The Gate to Strange Phenomenon). However the publisher, Beth Robbins, gave me the O.K. to write a story on the topic of Morgellon’s disease which was becoming notable in the mainstream media as well.

I did as much research on the subject as I could but there was precious little information on this new disease. It had supposedly first been noted in Arizona and Texas. I lived in Arizona but had heard of no one suffering from this rare disease.

In November of 2007 I went to work for Dillard’s department store. I was working there for a year when I met Kelly M. She was a very pretty twenty seven year old woman who was apparently crippled. I thought for one so young to be using a rolling walker, bent over and barely able to walk, the tragedy had to be some tragic car crash scenario. She bought several things from me and I just had to ask how she came to be in such a condition. She told me straight out: “I have Morgellon’s Disease.”

I was stunned. I had heard about the itching and scratching, the strange fiber like hairs and lesions, but why was she in such a horrid position from this disease? I told her that I had written an article on the subject and that I was very interested to hear her story. Outside she began to tell me her stories in a disjointed fashion. I listened attentively, and finally told her I wanted to write an article about her and asked her if she would be willing to answer some questions. She said she would, but it took some months, as her illness makes her increasingly vulnerable to pneumonia which she contracted that same week I’d met her.

Kelly was born in 1981 and raised there until age five in Buffalo, New York. At some point in her youth before moving to Scottsdale, Arizona in 1986, she was infected by a deer tick bite with Lyme Disease. Like most people Kelly never developed any symptoms for may years. Her symptoms appeared gradually and were put down by her family and by the medical community to laziness and/or mental instability. She suffered from loss of appetite, depression, fatigue, increased severity in her asthma problems, and a skin rash that was perpetually troublesome. Her asthma several times turned into pneumonia and threatened her life.

Kelly attended Pima Elementary School from 1987 to 1993. Then went on to Supai Middle School, Coronado High School and finally on to the New School for the Arts where she studied violin and became proficient and gave concerts. She then attended Scottsdale Community College for three years but could not finish due to her declining health.

In high school Kelly was assaulted by a young man who had first stalked, then brutalized her, threatening to kill her and her family if she told. She had a child by this man. She kept and raised the child, her only son, in spite of the myriad difficulties and the onset of complications from the Lyme Disease. Kelly claims she never resented being a young mother because when she

was only 20 years old her period stopped due to unknown disease and she found out that she would not be able to have any more children.

Kelly says about her rape and challenging way of life as a single teen mother with a debilitating disease; “What a blessing it is that I had my son so young! If things had not happened when I was a teenager the way that they did, I never would have been blessed with having a child at all.”

The symptoms of Kelly’s Lyme included Rheumatoid Arthritis, premature menopause and extensive nerve damage which caused her to have to stop performing on the violin before audiences, though she still plays today as best she can for herself. When Kelly became too ill to work at all she had to rely on her parents who allowed Kelly and her child to live with them in their house. Her independence came to an end as her parents slowly came to understand that there was something very wrong with Kelly’s health, although at the time Kelly, moved back into her parent’s home no one had any idea what was wrong with her.

As the undiagnosed Lyme took its toll, in 2000 she suddenly began to develop the itching rashes and lesions with the attending fibers and growths connected with Morgellon’s. She had no idea what this was, nor had she been diagnosed yet with Lyme. She finally heard about Morgellon’s on a TV program and did some internet research, which she took to her doctor. Five years ago, in 2007 she was officially diagnosed with Lyme Disease and only last week was diagnosed officially as having Morgellon’s Disease. Still to this day most of her family shuns her because the initial diagnosis was “Delusional Parasitis.” (That is “bugs on the brain.”) She was given anti-depressants and told to seek psychological help. Psychiatric doctors even tried treating her with anti-psychotic drugs that caused very severe adverse reactions due to the fact there was nothing wrong with her mentally.

Kelly is in constant pain and torment from the tiny itching hairs and the rough patches of skin and lesions which cover most of her body, which in turn leave behind scarred and inflexible patches of damaged skin. With the arthritis brought about by the Lyme’s Kelly has become increasingly unable to move her legs and arms, her back is in constant pain and she had to begin use crutches and a rolling walker to get around. Another odd occurrence for her is that her natural hair in places has become wiry and thick, and her hair has turned various odd colors, green, blonde-green, bright red and sometimes transparent or white! Her over all body hair has become green and has to be shaved off regularly so she doesn’t offend people. Some of her hair has the consistency of small, flat pieces of Scotch Tape ™! This is similar in fact to the strange coloration and texture of typical Morgellon’s fibers. It is as if her DNA itself is changing under the attacks of the disease. All this at 21 years old! Bravely, even heroically, she takes care of herself and her son as best she can alone and with little financial help. She is in desperate straits needing well over twenty thousand dollars to cover treatment costs.

This last year doctors prescribed the heavy doses of antibiotics with which Lyme Disease is supposed to be treated with when initially contracted. At this point there is no telling if the treatments have had any effect. Even since I last saw her she has developed serious joint problems and has had two bouts of near-fatal pneumonia. She is very often too exhausted to do any sort of activity at all. Worse, it seems the Morgellon’s is doing something to her lung tissue, causing her to have massive asthma attacks just after the formation of lesions. Something, (doctors cannot determine what), keeps showing up on her lung x-rays and then disappears when she has these attacks. These episodes have now brought her close to death on at least three separate occasions.

At this point, house-bound and in pain, Kelly is trying her hand at writing. She has several stories she wants to publish. Yet even writing is a task for her now. Still, Kelly is the type of person who wants to give back to others with her creativity and her energy. Life has thrown her perhaps the worst kind of curve-ball any of us could imagine, a debilitating set of strange new diseases which no one understands and for which there is no cure, but she keeps swinging. She keeps fighting for a normal life. Who can say if there is a true ray of hope for Kelly on this dark journey? It seems to me that these cases of Morgellon’s need to be quarantined, studied thoroughly by our top doctors and scientists, and treatment given to the patients gratis, in order to stop this horrible disease in its tracks before it spreads further. It is time the U.S. Govt. which has now recognized Morgellon’s as a real threat, should step forward and take decisive action.