Bizarre Morgellons Disease: A Nurse Describes Her Own Symptoms
Cindy Casey's First Symptoms Began in 2003
Cindy Casey, Registered Nurse, Now On Medical Leave from California Pacific Medical Center's Critical Care Unit, Hughes Springs, Texas: "Looking back on it now, I know it first presented with chronic fatigue. I realized I was tired all the time. I kind of tried to attribute it to other things and tried to ignore it for awhile. Then I started to break out in skin lesions. This went on for a couple of years off and on. But the fatigue was profound. I was sleeping up to 18 hours/day.
I also noticed what I call Ďbrain fog.í It was just inability to focus and to think straight. I could not multi-task like I used to. Itís kind of difficult to describe to a physician and it sounds so vague that no wonder they just blew it off as possible depression. I really didnít feel depressed and anti-depressants did not help me any.
Painful, Itching Skin Lesions
The skin lesions came up Ė first it was sort of intermittently. Then over the past three years I became full blown skin lesions all over my body. Probably the first part was on my lower legs, in between my ankle to my knee, right along my shin bone. That was probably the first area that got really bad. I didnít know what I had. I went from dermatologist to dermatologist and this went on for a couple of years and kept getting worse. The doctors werenít really helpful. I just kept making appointment after appointment and they just kind of blew it off as a psychological problem.
Then, a friend called me and said, ĎWatch the news tonight. There is going to be something on KTVU,Ē which was airing in San Francisco. I lived in San Francisco at that point. It was a week after my husband and I got married. This was going on before we got married and a week after our wedding. When I watched the segment, it was with the Morgellons Research Foundation.
Mysterious, Unidentified Fibrils in Skin Lesions
What they showed was really weird. There were fibers slightly coming out of the skin lesions, both under a microscope and some visible to the naked eye. The news story recommended people get a Radio Shack microscope. So, I thought maybe thatís what I have. My husband went and got the microscope the next day and thatís when I knew what I had. It was May of 2004. I will never forget the feeling the first time we actually saw the fibers with a microscope. I had felt like there was something in the wounds, but on me itís just hardly visible to the naked eye. But with the scope, you can clearly see them and itís very alarming.
SO, WHAT YOU ARE SAYING IS THAT PEOPLE CAN HAVE LESIONS AND NOT BE AWARE THAT THERE ARE MICROSCOPIC FIBERS IN THE MORGELLONS DISEASE?
THE PHOTOGRAPHS OF THE FIBERS ARE HARD PHYSICAL EVIDENCE, ARENíT THEY?
You would think so, but amazingly enough, I am very disillusioned with the medical world having been in the medical field all my life (26 years nursing) myself, I canít believe that doctors are this obstinate. If itís not in their books, they donít want to listen.
COULD YOU PLEASE EXPLAIN WHAT YOU WERE FEELING AT THE SKIN LESIONS AS THEY FIRST STARTED EMERGING?
The itching is so intense, it was unlike anything I had ever had. Iíve had poison ivy and things that itch pretty bad. But this was unlike anything I had ever had Ė an intense itching and crawling sensation. It actually feels like something is crawling under your skin. I would take tweezers and try to remove the fibers. Itís very difficult. They have like a substance on them thatís connected into the tissue. A lot of people have pulled very long fibers out that are macroscopic. Mine are mostly microscopic. I do have a few that can be barely seen with the naked eye. But you can pull them out with a good pair of tweezers and thatís the only time you get relief from the lesions Ė when you can pull the fibers out.
ONCE YOUíVE PULLED THEM OUT, HOW LONG IS IT UNTIL OTHERS EITHER COME BACK IN THE SAME PLACE OR NEARBY?
Within 24 hours, and maybe even within 12 hours Iíve noticed before. They are very fast growing. Microscopically, they resemble particular fungi. But they donít fit any fungus thatís ever been described. The fibers are too large. But itís almost like a moldy-like substance. A lot of people, and I have had, too, some multi-color fibers that look blue and red. Dr. Wymore has examined several of these and right now we have more questions than answers.
SOME OF THE REPORTED RESEARCH SAYS THAT WHEN THEY HAVE TRIED TO DO AN IDENTIFICATION OF SOME OF THE FIBRILS, THEY HAVE COME UP WITH A CELLULOSE THAT WE ASSOCIATE WITH PLANTS?
That was some of the earlier studies. As far as I know, Dr. Wymore who has looked into this more closely than anybody else, has not come up with that conclusion. So, we still donít know. We have some forensic labs looking at this and so far we donít have any answers. It doesnít match anything thatís in textbooks.
USUALLY YOU THINK OF Science
AND MEDICINE AS BEING HARD SCIENCES AND THAT THESE ARE FIBRILS THAT PEOPLE HAVE PHOTOGRAPHED. THE FIBRILS DEFINITELY SEEM TO BE SOME TISSUE OR SOMETHING THAT HAS TENDRILS COMING OUT OF IT? WHY IS IT THAT THOSE FIBRILS ARE NOT IMMEDIATELY IDENTIFIABLE?
Thatís what I thought, too. In fact, before we found Dr. Randy Wymore, I thought one scientist in the lab for one week will have the answer to this. I found out that it works a lot differently than that. When he tried to culture it, nothing grew. The PCR tests were difficult because he didnít know a particular organism to look for. Even forensic labs are at a loss for having any answers. It doesnít match any textile thatís known. So, I thought so, too. Thatís one of the most frequently asked questions. I thought it would be a lot quicker.
Also, it takes a long time to find a doctor like Randy Wymore who is very interested. And now it takes a long time for Oklahoma State University, whIch is in the process of getting their internal review board OK to do clinical studies on human subjects. I didnít realize what a long process that would be.
Academic Explanation: "Delusions of Parasitosis"
This is the problem because thatís the best way to describe the sensation, and yet when you say that to a physician, they automatically put you in a category as 'delusions of parasitosis.' This is what they have been taught in medical school Ė when people who describe crawling sensations on their skin and think they have bugs, they are delusional. They want to use medicine for Tourette Syndrome. [ Editor's Note: Tourette Syndrome (TS) is a neurological disorder characterized by tics -- involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way.]
So thatís why weíve had so much problem getting any kind of medical attention. They want to put us on anti-psychotic medication. Here it is so frightening and the symptoms so miserable, I was literally up night after night. My skin was so sensitive with open sores that I couldnít even stand to put on clothes. I would wrap in a sheet and lay on the couch for weeks on end this went on. I was unable to tolerate it. The symptoms are so miserable, itís hard to even describe it.
WHY IS IT THAT THE MICROSCOPIC DISCOVERY OF THE FIBRILS NOT CONSIDERED HARD PHYSICAL EVIDENCE OF SOMETHING HERE THAT NEEDS TO BE INVESTIGATED AND UNDERSTOOD?
Thatís a great question. Doctors donít believe it. They will not look. The minute I knew what I had, I went back to the dermatologist with my little handheld scope and asked if he would look at a lesion. Thatís when he said Ďno,í and referred me to a psychiatrist. They will not look! I didnít believe it. Here I am a nurse and they listen to me when I describe whatís going on with critical patients that I specialize in and transplants and open heart surgery. I had excellent rapport with the physicians I worked with, but when I go to a doctor and explain whatís going on with me and ask him to look, suddenly Iím delusional.
Geographic Concentration of Morgellons
I SEE THERE IS A MAP IN WHICH CALIFORNIA, TEXAS AND FLORIDA SEEM TO BE WHERE THE CASES HAVE EMERGED MOST INTENSELY FIRST?
Yes, thatís where the most registrants with the Morgellons Foundation are. We donít really have any true epidemiological study that tells us any answers for sure. That might be where people are more apt to have internet access and find out foundation.
I WONDERED IF IT MIGHT BE A CLUE TO SOMETHING IN THE SOUTHERN LATITUDES AND TEMPERATURES THAT MIGHT RELATE TO THE ORIGINS OF WHATEVER THIS IS?
Right. We have considered that, too, that where the most people are reporting this are wet and damp areas. A lot of people have reported being exposed to a flood or mold or water exposure. Weíve noticed that with our registrants, a large percentage of them.
WHAT ABOUT YOURSELF?
Yes, I did live in an apartment for years that flooded. It was in Sausalito, California, and I was right on the hills there. Itís a good place for mudslides and it flooded every year. Iím not sure that I was exposed to mold, but there would have been a good opportunity for it.
HOW MANY PEOPLE RIGHT NOW ON MAY 30, 2006, WOULD YOU ESTIMATE THAT YOUR FOUNDATION HAS HEARD FROM AND THEY MIGHT FALL INTO THE MORGELLONS DISEASE SYNDROME?
I think the last number I heard Ė and I know weíve had a lot more since then and recent media Ė but I think it was right around 4,000. Thatís 4,000 families that have registered, so some of them represent 4 or 5 family members that are all infected. Weíve heard from all 50 states. The highest concentrations are in California, Texas and Florida, but we have registrants from all states and at least sixteen countries.
[ Editor's Note: In addition to the United States, the Morgellons Research Foundation at Oklahoma State University has received registrations of the skin disease complaints from Canada, New Zealand, South Africa, Japan, Philippines, Indonesia, Australia and Europe, including Ireland, the Netherlands, Denmark, Italy, Spain, England, Germany and France.]
Family Cluster Cases of Morgellons Symptoms
We do have some families in which everyone from children through parents and grandparents are all infected and it seemed to happen all around the same time. So we donít know if itís transmitted from person-to-person, or if they were all exposed to whatever toxin might be causing it.
Lyme Disease Link?
Itís been a long haul for me and in the beginning I was treated for Lyme Disease. There has been some belief this might be associated with Lyme Disease because a high percentage of Morgellons patients so far have also tested positive for Lyme Disease. So, I went into treatment for that hoping I would get better. I didnít even realize that Lyme could play a part. Actually, my symptoms became worse and worse (while on Lyme treatment).
Now, the past eight months, I have gradually been improving and now Iím to a point where itís tolerable. Itís still very freaky and frightening and creepy and crawly and Iíve come to a level of acceptance, I guess. But my lesions are probably 80% improved to what they were two years ago.
WOULD YOU SAY THAT THE PEOPLE WHO ARE NOW COMPLAINING, THEIR SYMPTOMS STARTED ONLY TWO OR THREE YEARS AGO AS WELL?
Pretty much, for the majority, yes. But I would say it was anywhere from 1998 on.