A little about why I’m starting this blog:
I suffer from a condition called chronic idiopathic urticaria and also what I would call severe eczema. For those not in the know, here is a definition: Urticaria (from the Latin urtica, “nettle” from urere, “to burn”), commonly referred to as hives, is a kind of skin rash notable for pale red, raised, itchy bumps. Hives may cause a burning or stinging sensation. They are frequently caused by allergic reactions; however, there are many nonallergic causes. Most cases of hives lasting less than six weeks (acute urticaria) are the result of an allergic trigger. Chronic urticaria (hives lasting longer than six weeks) is rarely due to an allergy. The majority of chronic hives cases have an unknown (idiopathic) cause. In perhaps as many as 30–40% of patients with chronic idiopathic urticaria, it is caused by an autoimmune reaction.
For roughly 20 years, I’ve been dealing with these skin issues. Recently, however, my skin has been in a near constant state of flare up. For the past year, I have had mostly no relief besides a week here and a week there when I was prescribed a short round of steroids. Having itchy, red, burning skin on a regular basis is maddening and frankly very depressing. In fact, this condition has become rather debilitating in that it is affecting my quality of life and mental state. My sleep is always disturbed. I scratch until I bleed. I look like and feel like a leper. I’d rather not have my skin showing out of fear that people will think I have an infectious or contagious disease.
Doctors are of little to no help. Few of them want to listen when presented with a skin issue as most of them are difficult to diagnose. They all tell me the same thing: “see a dermatologist!” And then I’m prescribed various topical steroid creams that don’t help much if at all and also cause long-term issues such as skin thinning and stretch marks. (Cause yeah, I totally want more stretch marks!) Antihistamines are also of little to no help. I’ve been taking a cocktail of them for months and I’m beginning to worry that I am now a “pill-popper”. So far, the only thing that really helps is prednisone. One cannot exist on prednisone for the rest of her life. Side effects are awful, especially when taking it long-term.
Fast forward to now. For months, I’ve been researching an “experimental” therapy that many people with various autoimmune illnesses have tried with success. Helminthic therapy. By definition: Helminthic therapy, a type of immunotherapy, is the treatment of autoimmune diseases and immune disorders by means of deliberate infestation with a helminth or with the ova of a helminth. Helminths are parasitic worms such as hookworms and whipworms.
So yes, there you have it. In the coming days, I’m going to be deliberately inoculating myself with parasitic worms in the hopes that my skin issues and misery will come to an end; or at least improve some.
I want to make it perfectly clear that this was not a decision that I made overnight. I researched for several months and said research included personally speaking with several people who are undergoing this treatment and have been for periods of months and/or years. My research also included going over studies/clinical trials and various scholarly medical articles written by physicians. Helminthic therapy is not approved by the FDA. My worms are being obtained from a provider outside of the United States. To protect my provider, I will not mention their name or relative location at all in my blog. If you wish to know more about my provider, you can email me privately and perhaps we’ll discuss it there if I deem you trustworthy. That last part isn’t meant to offend anyone. There are people out there who are against this treatment (or anything that can’t be regulated by the FDA and therefore will not put money in certain pockets) that they would go to great lengths to find things out and put a stop to them.
As I mentioned above, I am in contact with others who are using helminthic therapy. I am part of more than one online support group and I will be in close, regular contact with my provider. I will also be under the care of a physician even though this therapy cannot really be supported by the American healthcare system. In the event that I need medical intervention, which is doubtful, my physician has agreed to treat me.
There is a chance, 25% actually, that this therapy will not work for me. If it does work, it will not be a quick fix. My understanding is that it will take several months until I see any sort of improvement, if any at all. I may experience side effects which include diarrhea, cramping, fatigue or even anemia. Or, I may experience no side effects at all. I will most certainly, provided my worms arrive here ALIVE, experience an itchy rash at the inoculation site. I’ll explain more about that in an upcoming post. The title of this blog should not be taken literally. I will not be EATING worms as my adorable little title suggests. The worms will simply be crawling through my skin. Much better, right? I think so.
A little about why I am NOT starting this blog:
- to gain sympathy or attention (Frankly, fuck that.)
- to promote helminthic therapy (I am not offering medical advice nor is my provider..)
- to gain anyone’s approval (I don’t need it.)
I’ll be tracking my progress here throughout the course of my therapy. As I mentioned above, I’ll be inoculating within a few days provided that my worms arrive ALIVE. If they are exposed to cold for too long they can die. I expect that my worms will arrive by the end of this week and I’ll be updating here with photos and more interesting bits as I go along.
Thanks for reading!