Reflections about Morgellons Disease
Having lived with Morgellons disease for just over four years, I'd like to share certain awarenesses, in the hope that it will help prevent people from making the same mistakes that I did.
Almost everyone that comes down with Morgellons immediately assumes that they are dealing with some sort of insect infestation. This usually triggers a frenzy of activity clearing the environment of unnecessary belongings, using chemicals to kill invaders and exposing oneself to further environmental toxicity. Been there, done that.
I was just as insistent as everyone else in this community, in the belief I was infested with bugs. After all, I've been on this planet for 57 years and know what a darn bug feels like. What I didn't know (and couldn't hear at the time) was that a severe histamine (allergic) reaction can mirror the sensations of bugs crawling on the skin to the point that it is virtually impossible for the individual to discern the difference. Unfortunately, it's as if our brain has only has one wiring system to deliver these two distinctly different messages to the physical body. Having never experienced a histamine reaction, one couldn't possibly know the two could be identical. Call it a flaw in our design, and take it up with the Creator.
At least allow yourselves to keep an open mind to the possibility that you are not crawling with bugs, but that these are SYMPTOMS. The nervous system is reacting profoundly to some sort of allergen, pathogen, or other toxic event that is triggering it to into high red alert.
It was only during the act of healing, that I was able to understand this concept.
During treatment of 3-4 months, the symptoms of itching, biting, stinging and crawling started to quiet down, as if the volume were being lowered a tiny bit each day—until they completely subsided. This did not feel like bugs dying, it was something altogether different—the body slowly just stopped reacting.
In your travels, you will hear that Morgellons is a parasite: a mite, a nanobot, a worm, or 'other.' Keep in mind though, that a parasite can be a spirochete, protozoa, fungi, mycoplasma, etc. and should be viewed as something separate from the crawling sensations on the skin which are in most cases symptoms.
My feeling is that there is a parasitic component involved (along with other complications), based on the high "positive" that is showing up on DNA stool tests showing "non-human parasite, taxonomy unknown"—and positive results for the new protozoa, Dr. Fry, of Fry Labs discovered. We know that Morgellons sufferers have high bacterial and fungal levels as well, and those getting tested for heavy metals seem to be carrying a lot of toxicity. It seems that Morgellons might be a multi-layered, multi-faceted disease and needs to be treated as such.
For all those people in the forums that are vehemently convinced to the point of evangelical proselytizing that these sensations of the skin are a bug or nanotechnology, please consider that the world is watching. It is bad enough, that our families, physicians and governments do not believe this disease is real and label us with a mental illness, but a community in which there is so much divisiveness lessens our credibility in the eyes of the general public, which is all too willing to discredit us—and for good reason. We often sound unstable. If you do not have scientific proof to back up what you think is going on, try to keep an open mind.
Now that I've said all this, I want to qualify my thoughts. There are those in the Morgellons community that truly are having issues with bug infestations of their skin. Clearly, something in the human condition is severely broken to allow us to be host to foreign organisms like this. A co-infection in which the bodily terrain is so compromised that it can be invaded by foreign organisms, is not the general norm for this community—however it does exist.
Most people experiencing the sensations of crawling, itching stinging and biting, do the obvious and exterminate. It is imperative to know first if your environment is the cause. We know that the Morgellons infection can be delivered through a variety of bug vectors—mites, scabies, spiders, ticks, bedbugs, etc. One way to figure out what is going on, is to call in a professional exterminator. If they check your environment and tell you there are no bugs, embrace the idea that maybe this is the disease. Another way to get a reality check is to see if other people that live with you or visit are experiencing your sensations. If you are the only one, that is an indication that maybe the problem is internal and not external.
Extermination in this case, is not going to serve you well and it poses a moral dilemma for any professional you've called in, who is not supposed to spray if they cannot find evidence of infestation.
There is often a toxic component to this illness, as many of us who have been tested know. By spraying unecessary chemicals you may be overburdening a body unable to detoxify itself, thus creating an even greater problem for yourself.
Food On the diet and pH page I talk more about food, but it bears repeating here. The food you eat can have a dynamic affect on your symptoms. I have experienced a full return of itching and stinging by eating one too many products that triggered me (carbohydrates), i.e. a bagel on one day and three health-food cookies, two days later. This full body reaction took a good two weeks to calm down before symptoms left me completely. If your diet consists of processed foods, GMOs, high sugar, high carbohydrate denatured foods, it will be hard to become symptom-free without making changes that nourish the body instead of fueling symptoms.
Common sense tells me that families with more than one member infected might not necessarily be an indication of high contagion to the general public (although I can't discredit that), but might have to do with having similar genetic material, such as in a mother and child relationship, with the possibility of a common weakness or even immune deficiency making them susceptible to the disease and more likely to pass it on.
People ask me all the time about contagion and I have no answers. I've heard convincing stories with opposing positions. Dr. Ginger Savely has seen hundreds of Morgellons patients and has not gotten ill from them. As far as I know, she doesn't believe it's contagious. Yet, I have heard of people getting infected from contact with someone in the throes of crawling, itching and stinging while spending little time with them. Usually, they've been in close contact in a car or slept in the same bed.
I do not believe at this stage, that I am contagious, and I am out living among those that are healthy without fear of making them ill. If there is a contagion factor, think of all those people that currently have fibers in their skin but have no symptoms of Morgellons. These are the folks that are handling (and putting back) vegetables in the supermarket with their bare hands. So if it is contagious, it's likely most will have been exposed. If you are in the early stages of the disease where you are experiencing crawling sensations and feeling miserable, my advice would be to refrain from pursuing intimate partnerships during this time.
Parting thoughts Becoming ill with Morgellons is psychologically devastating to the individual. I believe that many of us suffer from post traumatic stress disorder (PTSD). Faced with a situation in which there are more questions than answers, uncertainty about what we are dealing with and how to treat it, lack of empathy from the current medical extablishment, including little support from family members and friends who will not acknowledge this disease as real unless an "authority" tells them so, has a huge negative psychological impact on the Morgellons sufferer. Many withdraw, suffering with deep emotional pain and isolation that has in some cases driven them to take their lives. To top things off, we are told we have a mental illness by those "authorites" that stand united in ignorance.
There are thousands of people turning to the Internet in the hope of finding help. For this we are branded as Internet "fadists" as if Morgellons were a hysterical disease that could be caught by reading websites. We just can't seem to catch a break.
It is a long road back to healing, but many of us are succeeding in recovering our lives. When I got sick there were only two people publicly announcing that they were well.
There are many unacknowledged (heroes) in our community who are researching and studying, and already in the few years I've been sick, I see progress. We are figuring out how to manage and we are sharing. I look forward to the day when we will have enough answers to guide others through this experience in an intelligent fashion.
It has taken me a few years, to come back to a sense of being myself. Not knowing if I were contagious to others, I went into self-imposed isolation for ten months. Zero physical contact of any sort—not even to pet a dog. No man is an island and in the end, it was my friends that helped me heal; the girlfriend that let me cry on her shoulder when my long-term relationship crumbled, showed that she could survive physical contact with me without getting sick—allowing me integrate one tiny toe placed in front of another, back into society. Sometimes the smallest gestures have the greatest impact.
If you have Morgellons, then I'm talking directly to you. You are courageous to carry such a heavy burden and are not alone on this road—even if it feels that way. I say this for myself as much as to you—forgive yourself for mistakes made unwittingly while journeying this illness, and give yourself a pat on the back for the hurdles you've managed to jump.