by Managing Morgellons on Morgellons disease
Q-1) Could you briefly describe your story from getting diagnosed to having been cured?
A-1: I started experiencing Morgellons disease symptoms when I was 24. I had all the hallmark symptoms of the disease; deep, slow-healing lesions, fibers protruding from the unbroken skin, brain fog, fatigue, etc. I had no idea what Morgellons disease was then, so I sought medical help. Unfortunately, despite seeing many doctors and specialists, I was not able to get an alleviation from symptoms. I eventually learned about Morgellons disease after a top-rated dermatologist accused me of self-mutilation and diagnosed me as being delusional. Mind you, this happened without a skin examination or a psych evaluation. I’m 30 years old now and have dedicated much of my free time to advocating for Morgellons disease.
Q-2) How did the disease change your life, in terms of diet, work, and other activities?
A-2: Morgellons disease seems to be triggered by certain foods, which I’ve had to adapt to over the years. No more sugar, dairy, or gluten. Whenever I do consume these things, my symptoms intensify.
I was active in my community before becoming ill, hosting weekly events for performance artists to gather and regularly volunteering to help those in need. Morgellons disease suddenly halted all that. I was barely making it through my workday due to extreme fatigue and painfully slow and disfiguring lesions all over my body. I also wasn’t getting answers from doctors, so I didn’t know if I was contagious. I spent much of my time in isolation.
Q-3) How did you keep yourself updated about your disease? Please specify if you were a member of an advocacy group; depending on government initiatives; or reading about your disease.
A-3: I am the founder of www.managing-morgellons.com. We are a new international patient advocacy group working to raise awareness about this disease and to hold members of the CDC and the government accountable for the mishandling of Morgellons disease. Regarding staying updated about this disease, I rely on the world’s largest Morgellons disease foundation, The Charles E Holman Morgellons disease foundation. They have funded over 17 scientific peer-reviewed studies, all demonstrating Morgellons disease to be associated with an infectious agent and not a delusional disorder, as the CDC asserts. I also stay updated with Oklahoma State University Morgellons disease research facility. They are the only university in the US at this time conducting research on Morgellons disease. OSU announced this year that they would be doing further research and releasing more data on Morgellons disease, so I’m hopeful about that.
Q-4) Are your treatment options easy to access? Are they expensive? Is there a permanent cure for your disease?
A-4: All medical practitioners must follow the dictates of the official position of the CDC. Without the CDC or IDSA to validate Morgellons disease as a true physical disease, patients are condemned and denied proper testing, diagnosis, and healthcare treatment. A few doctors, mostly LLMDs or Lyme-literate doctors, recognize Morgellons disease (the peer-reviewed science done over the last decade draws a correlation between Lyme disease and Morgellons). Suppose you find a doctor who recognizes Morgellons. In that case, you’ll be paying out of pocket for all your visits, lab testing, and medication, as most insurance policies will not cover these treatments since the CDC does not approve them. It’s typical to hear about Morgellons patients spending tens of thousands of dollars yearly to attempt to lessen the severity of symptoms. Unfortunately, there are no known cases of anyone recovering fully from Morgellons disease, although I have heard of people going into remission.
Q-5) How did the treatment affect your family’s financial situation? Did you have to take loans or borrow money from friends and family?
A-5: Many people with Morgellons disease are already too ill to work, so there are zero treatment options available to many. It’s about $500 out of pocket to see an LLMD for a one- hour-long appointment, plus another several thousand for the lab testing and medication. Considering there are no established treatment options, the doctor is simply running an experiment and has no way of knowing if you will respond. There are also reports of patients getting much worse when undergoing experimental treatment options. Due to this, I have had to put my treatment on hold. It’s more than I can afford right now, and I worry that the treatment options could make me much sicker and interfere with my ability to work and provide for myself.
Q-6) Are you trying out any alternate healing techniques?
A-6: I’ve managed my symptoms much better through the years by taking various supplements, dry brushing, and practicing a healthy lifestyle. Due to the PTSD that comes from being discriminated against by the medical community, it’s essential to tend to your mental health. I find mental relief in practicing meditation and yoga.
Q-7) How did you and your family deal with your changed circumstances?
A-7: I’m very fortunate to have the emotional support of my family, as many who suffer from Morgellons disease do not have that. Typically, when a doctor says you are delusional, your friends and family will side with the doctor. It’s a sad situation because so many have nowhere to turn. My mother had fibromyalgia, and so she dealt with being dismissed by doctors when she tried to seek treatment. I think she’s more open-minded about what I’m going through because of her experience.
Q-8) Please share one aspect of your journey that touched you most.
A-8: I was in denial about having Morgellons disease for many years. It took a lot of courage to come forward and share my story due to the ongoing stigma and misunderstanding about this disease. It always touches my heart when someone comments on my Youtube and shares their story. People often express that it is the first time they have ever spoken to anyone about what they’re going through. I’m grateful that the channel has become a safe space for others to come forward and share their stories. We are collectively coming together and standing for the truth; one day, no one will suffer alone with Morgellons disease. One day, everyone will be able to seek out fair and effective treatment.
Q-9) Do you have a secret to staying strong? What inspires you to keep fighting?
A-9: Adopting an extremely healthy diet and lifestyle has helped me tremendously, but what keeps me going is knowing that our work to raise awareness will help many people worldwide. So many of us can’t get back the years of suffering, isolation, and abuse we’ve endured due to the CDC’s improper stance on Morgellons disease, yet the work we are doing now will make it so that others who come down with this disease in the future won’t have to suffer in the same ways.
Q-10) What would be your message or advice to patients diagnosed with rare diseases?
A-10: My message to those suffering from Morgellons or other rare diseases is not to give up! Do what you can to stay healthy, and be gentle and forgiving of yourself when symptoms get bad. Remember, it’s not your fault! Connecting with a community of people who understand your condition is important too. Search for support groups, or look for Youtube videos. Chances are, you’ll find something you can connect with. For those with Morgellons disease and/or Lyme disease, I encourage you to check out the Managing Morgellons emotional zoom-based support group. We get together every other week to share our experiences. It has been beneficial along my healing journey, and I know everyone who attends that group gets a lot out of it.
the petition can be signed here (anyone in the world can sign): https://actionnetwork.org/petitions/we-demand-presidential-action-on-morgellons
The views expressed in this article are the author’s own and do not represent any kind of medical advice.