The below article is posted on behalf of user woman4humanrtz in contribution to the Morgellons Disease discussion here.
I have a masters in nursing, but no longer work due to my health problems. Below are my personal photographs documenting the course of my Morgellons Disease and the effectiveness of treatments. Since there were no known effective treatments endorsed by the medical community, I have experimented on myself for the last eighteen months. Recently I added two new treatments to my regime and in less than three months on the new therapies, the results are dramatic. I believe that I am now 75% cured.
Photos # 1 & 2 taken 01/2012: Right Foot: Note scales, crusts, redness and dark specks
Photo #3 of right foot noting substantial improvement. Photo taken 07/2012
Below: Photo # 4 of “specks” that when removed from my legs and feet resemble hair follicles/fibers. Photo also shows peeling skin and scabs removed from right foot 01/2012
Below: Photo # 5 taken 01/2012 of left leg. Note lesion where scab was removed revealing hair-like follicle/fiber in center of wound. Also note edema and multiple wounds.
Below: Photo #6 of Left Leg taken 07/2012: Wounds are smaller and leg has less edema.
Treatment Protocol History
I will briefly review my treatment protocol history, but it is much too extensive to cover every detail here. For months I used Dakins Solution along with wound debridement and got no better. My wounds would not heal; in fact, they slowly got larger. I started removing the fibers/follicles and then my wounds would heal. I could not keep up with the new wounds as well as the existing ones where fibers continued to grow.
I did in vitro experiments to check the efficacy of products on my skin/scales and fibers. I found some that worked well, especially “Neutrogena® Deep Clean Cream cleanser, oil free” to help soften and remove the scales. Sometimes, I left it on for hours and then scrubbed it off in the shower with Scotch Brite Stay Clean Scrubbers (plastic). Luffas were useless. Neutrogena works well to soften the scales so they can be removed. The itching was greatly reduced, but not eliminated. Sometimes, I would leave the Neutrogena on for only a few minutes and then I could scrape off the scales. Wounds were sometimes visible on the surface of my skin, but frequently small wounds were hidden beneath layers of scales.
I suspect that my wounds are partially caused by Actinomyces bacteria introduced into the skin by a now resolved parasitic (scabies) infestation. Actinomycosis infection causes chronic wounds that drain and may contain colonies of organisms that resemble grains of sand. The accumulation of these colonies of bacteria can give the appearance of “sulfur granules” that look yellow or orange. Additionally, the surface over the involved area may have a hard or woody consistency and draining sinus tracts develop. I have seen (macroscopically) the sulfur granules in draining sinus tracts on my foot and leg.
Laboratory confirmation is very difficult because the bacteria are anaerobic and slow growing. They require special handling on specialized growth medium and the typical q-tip wound swab from the MD’s office is not sufficient. Additionally, cultures must “incubate” two weeks or more and the lab must be instructed to culture specifically for this bacteria. A negative culture does not r/o this infection. Interestingly, the CDC has no posted information on Actinomycosis in their A-Z disease index even though a missed diagnosis (often missed even by the best clinicians) can be catastrophic. This disease has recently made medical news because of cases of abdominal Actinomycosis associated with the use of IUDs.
Actinomycosis can occur virtually anywhere on/in the body, including the face, breast and skin- coincidentally all the most common areas associated with Morgellons Disease. Clinical diagnosis is usually made by macroscopic or microscopic identification of “sulfur granules” in draining sinus tracts. Actinomycosis is usually sensitive to high dose penicillin, but treatment with antibiotics may be needed for six months to one year. Initially, due to the possibility of multiple wound pathogens, a broader spectrum antibiotic (than PCN) may be needed for a short period of time (usually less than 2 weeks).
My Morgellons has improved significantly on antibiotics. After a year with this horrible disease, I went on a 10 day course of an antibiotic called cefuroxime axetil (Ceftin 500 mg twice a day) since I am allergic to Penicillin. Ceftin is a second generation drug in this class, and a first generation drug will not work for Actinomycosis. I improved, but my wounds worsened once I stopped the antibiotic. I started Ceftin again and have continued on it for greater than three months now. I continue to show significant improvement, with decreased wound size, decreased swelling and drainage.
Actinomycosis will not resolve if foreign bodies (i.e. fibers), are present in or around the wound due to adherence of bacterial bio-films that protect bacteria from destruction from antibiotics or by the body’s immune system. I continue to remove these fibers or my wounds will not heal. Incidentally, many of these fibers can be felt by running the fingertips over the affected area. Many fibers feel like splinters and are very painful to touch and excruciating to remove.
The second addition to my treatment regime that has shown dramatic disease and wound improvement is the use of Cansema® “deep tissue” black salve from Alpha Omega Labs. This topical treatment removes the abnormal skin, but does not damage my normal skin. http://www.altcancer.com/Products/qblack-salveq.html
This stuff is the closest miracle treatment I have found after eighteen months of research. It probably won’t cure in just two or three treatments. I just did my fifth. There are risks. Safety in pregnancy and lactation is also unknown. I first used the “deep tissue” black salve less than 2 months ago. I had a good response. It did not harm my normal tissue, but application to the morgi areas caused burning pain and I could only keep it on my skin for about 10-15 minutes. This stuff was able to penetrate the extremely hard surface-I hesitate to call this area “skin”, since it seems more reptilian than human. Unlike the experience of others, my fibers did not fall out, but the rate of their replication has dramatically decreased. Also, I still have to remove the fibers that were present before I used the black salve, but now, I am usually able to get to them.
The intractable itching was eliminated by about 50%. Another thing, an area that had previously itched intensely (even though no lesion was present) ruptured and drained large amounts of grainy yellow stuff. It left a ¼ inch hole in my foot and that has now healed and the itching in that spot has almost stopped. This stuff should NOT be used by pregnant or lactating women and anyone with poor circulation or poor wound healing due to diabetes or other medical conditions. Nor should it be used on the face or mucus membranes.
Although I do not know the short or long term safety of this product, living with Morgellons disease unchecked is not an option for me. Until the medical community comes up with a better solution, I will search for my own. Having unchecked Morgellons disease is not living; it is a slow death.
My photos speak for themselves. I am better-much, much better! For the first time in eighteen months, I am optimistic for a cure.