I tried to list in title what I used to search for. I'm only sharing in hope that it helps another. It's such a long story, I'll seperate it into categories.
My Point:
I had been on anti-fungals for 6 months. It seemed to kinda help, but not a cure. I was convinced that my "Morgellons", was yeast. I was wrong. I managed to get a "trial" of Acyclovir (anti-viral), and within 24 hours, I had significant improvement. Amazing improvement. I'm a week in now, and can't believe it. Definitively helping, not a guess. I have described myself (not to doctors) as having Morgellons for at least the last 6 years. Im my case, at least, It's obviously viral (one of 8 herpes virsus).
Symptoms:
I had single spots on my skin a decade ago that were "odd presenting zits". It was like a single white plug or white rice inside a spot. At the time, I learned that if I removed that plug, the spot would heal quickly. If I didn't, I stuck around. It's a bad set up for the future. Once it's beyond that, it doesn't work the same way.
I havethe black specs, hair issues, white plugs. At it's worst, it would be so many white plugs in an ulcer that refused to heal. All over my body. I have the typical Morgellons scars. I had the typical tramatic doctor experience. 6 years ago, what was a few spots on my body, explodedall over. I had systemic issues.At it's worst, I would sleep 13hours a night and felt like I hadn't slept at all. Brain fog, headaches, joint pain, digestive issues, ect. The list was so long, that I learned to not tell doctors about all of them. Too many things, and they stop listening, don't know where to start. I was deemed as having "delusional parasitosis" by one itch of a derm. Derms are the worst.I didn't know it until I ordered my medical records. It's horrible, awful, when you are so desperate. What are you supposed to do when your face is being eaten off? It was just trauma, after trauma.
I held onto my my life with everything I had, but it was hell. I lost everything. My identity, friends, my face, my job (sued my employer for disability discrimination dues to my illness). I always said - I don't want to die, but I don't want to live like this. It took pure endurance. Please endure. It's more than persistance. Endure through the lowest of lows. You are not alone.
I can't say for sure that I have Morgellons, but no one can. It's the only thing that has ever fit. I did years of research. I don't know if I am you, or if Acyclovir will help you. But I only came on this site to tell you to tell you about it. I endured 6 years of hell, and one medicine, that cost $7.00, did more in 24 hours than I have ever expereinced in 6 years.Acyclovir rocked my world when I expected nothing from it. Maybe we are not alike, but just thought I shouldshare.
I do have immune issues that maybe if I shared could help others. I can't do it tonight though.
I was warned the last time I was on this site for bullying. I certainly am not a bully, but I have been very vulnerable over the last many years, and that leaves one open to manipulation. I am very sensitive, very empathetic. I've also have had a hard time and have been taken advantage of. I pick up on other's energy. I have not bought "machines" to help my illness, and I don't recommend it. I would just like to say, do not engage people that offer crazy "solutions". Even when more than one supports it. I'm not sure it's being a bully when the inention is to protecta vulnerable group. I'll accept either conclusion.
Hey Fun, Morgellons is specifically associated with bacterial infection and there is a classification and staging system for the condition. Morgellons presents with embedded, often multicolored, filaments in the skin tissue.
Classification and Staging of Morgellons Disease: Lessons from Syphilis - PMC (nih.gov)
There recently was a case study published that provides further insight into eliciting the condition.
"white plugs" "Comedo-like masses can emerge from pores spontaneously or when scratched, and are sometimes described by patients as being sand-like. Patients may misinterpret these objects as being seeds, eggs, cocoons, parasites, or even arthropods."
History of Morgellons disease: from delusion to definition - PMC (nih.gov)
Have you had it? Did you take antibiotics and it worked? OMG! Share your story!
I have been on so many medications, antibiotics long term, differerent ones, and they never worked. But if you found something that worked, please do share!!
There's lots of articles out there, for such a unknown illness. I saw a recent one about it being spirochet:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5072536/
I can't say it's not that. I'm just sharing my own experience, if it helps another - that's great.
Thanks for sharing!
Immune issues that I encountered with "morgellons", white plugs, white rice, black specs:
I have always thought I had Morgellons, 6 years since explosion, but also prior to that. I see research articles about immune issues related to all sorts of "controversial" illnesses, most results seem inconclusive. I do see connection though. I am just sharing my experience with thehope that it helps atleast one other.
I first visited immunologist (dept of allergy and immunology) in 2015. Doc did typical first round testing procedure- T cells, B cells, Immunoglobins (IgG, IgE, etc). Everything was fine. At the time, it was determined that I had no immune deficiencies(which is different from autoimmune issues). I changed insurance, saw a different immunologist in 2017. He tested other parts of my immune system: my response to vaccines, Natural Killer Cells, a few others. My Natural Killer Cells came back low, but not super low. This is literally 1 number. 3 above, good, 1 or below bad. I was at 2. Doc, while one of the kinder ones, released me - so to say.
In 2020, my insurance changed again. I went back to 2015 University related office in major city, but with different doctor. When I first met him, he had another doc in office with him.I felt as if they were trying to prove a "Delusional Parasitosis" case. That crap was in my records, impeeded my care. But they did conduct blood tests. Once again, my Natural Killer Cells came back low, a 2. Doc siad a "red flag", but not a diagnosis. So he ordered a "functional natural killer blood test". Only a few places in the US do this test. To get to this point of testing, docs will want to have tested immune multiple times. It's not a test you can just walk in and ask for.
When that result came back, their attitudes drastically changed. I was suddenly validated. Story goes on. I'll share later. But after years of so many meds that never helped or made me worse, Acyclovir has been amazing for me. I can't say it will be for you, I'm obviously not a doctor. Just sharing my experience.
Make sure you watch out on this website. There are some questionable people on here, to be polite.