I can hardly believe it has already been 8 months since I started my helminithic therapy journey; In the briefest terms possible, it has been the more dramatic, mind-blowing, and wonderful decision of my life. In more extensive details... well, read on!
8 months ago, I infected myself with parasites; hookworms to be exact. Its one of those things that makes people say "If someone told me I was going to do this 2 years ago, I wouldn't have believed them." I, like more Americans, believed parasites were disgusting, dirty, horrible organisms that should be destroyed at all costs.
I want to be your friend! |
Now, I am in awe of the power of parasites, the ways in which they can (and do) live in symbiosis with their host, and the complex ways in which they have evolved along with their hosts. I now consider my hookworms (about 45 to be exact), to be a part of my body; as critical and vital to its function as any organ, and as welcome as my own blood. They have completed my physical being, like a long-lost friend. They are helping my broken immune system to heal; they are giving me a hope that I had abandoned years and years ago, when I realized that my conditions would be life-long, the treatments barely effective, and the prognosis grim.
2 weeks ago, I received my final (at least for the next few years) dose of hookworms, bringing my count up to the 'therapeutic' level of 30-45. In actuality, I began to notice the crippling symptoms of my autoimmune diseases fading about 1 month after my second dose in October. However, it is a slow process, obvious in the title of this post. The treatment is not without side effects; I am currently in a "flare" caused by the latest hookworm infection. My autoimmune diseases (MCTD/lupus, Fibromyalgia, Raynauds, and Autoimmune hepatitis), have been exacerbated by the introduction of the latest dose, as it was with each previous dose. This has not dettered me however; the flare usually only lasts a few weeks; and what follows is a blissful state of NORMAL. I. Feel. Normal. Read: hardly and severe, debilitating, mind-numbing, exhausting, unrelenting P.A.I.N. Energy levels on par with other people my age, as opposed to narcoleptics and flu-patients. The ability to get up in the morning without wanting to cry from the pain, dizziness, and crippling fatigue. The ability to think and speak clearly. The ability to play with my son, do the laundry, brush. my. teeth. Basically, all things I completely took for granted before I got sick, and which I had waved goodbye to for good, so I thought.
"Normal" |
Last night, I was unable to sleep, due to extreme pain. The entire left side of my body was on fire. I started sobbing uncontrollably. Something I had never really done before. Because I know what its like now to feel well, and thus, this flare is bitter and intolerable. It reminds me strongly of the 2-hour period before I received my epidural while in labor with my son. I had been fighting for over 15 hours, in such extreme pain that all I could do during contractions was stare at a wimpy sapling out the window and be "inside" the tree. When I knew that relief was coming, my courage faltered, as did my stamina and pain tolerance. So now, as I wait for this flare to abate, and wait for my "hookworm-i-dural", I have also found that I'm less tolerant of the pain.
Side effects; yes. However, the side effects of helminithic therapy are pathetically mild when compared to any other drug used to treat autoimmune disease; they don't cause cancer, wild mood swings, loss of vision, liver damage, ect. They just make you feel your disease for a few weeks, and maybe get a mild rash and stomach ache. But unlike the drugs, the rash/stomach ache and flare are temporary!! =D Then, you just get well. It's like getting married; at first it might be a little rocky when you move in together, but you learn to live with eachother. Eventually, you realize your spouse is actually your rock. They complete you; they support you; they inspire you to do things you'd never had the courage or motivation to do before. You are a part of them, and they you. Just like my lil' buddies. Just like falling in love, I see the world in a whole new light. I see possibilities and hope where I once saw nothing but blackness and despair. My new love affair with life has begun.
I encourage anyone with Autoimmune diesase, especially Multiple Sclerosis (MS), Crohns Disease, severe allergies and Rheumatoid Arthritis (RA) [These are the most highly-researched diseases with extremely high rates of remission (upwards of 90%)*] to look into this treatment; it might be a good option for you!. There have also been success stories with Autism and dozens of other autoimmune (or suspected autoimmune) disease. I have a rare disease, thus I'm basically it when it comes to research, thus I am a sort of guinea pig. But I decided to try it based on all of the amazing results that people with other AI diseases have had, and it is working for me. There IS hope. Besides, if it doesn't work, all you have to do is eat some canned whipped cream! Yup; hookworms are intolerant to nitrous oxide. kills em. Thus my biggest issue with the lil rascals is that I can't get my favorite frappucinos with whipped cream anymore *cry*. But its worth it.... it is SO freaking worth it!
Good thing you can make whipped cream at home ; ) |
Original Post: "They work! They work! (Helminithic therapy) 12/13
Sorry for the masssive delay in posting... but I have very fabulous news today! The results are in... the hookworms WORK! My dream has come true! I'm actually only 1/2 way through my helminithic treatment, with 15 more to go in January, at the moment I have between 15-20 hookworms, so I can't wait to see the results of my full dose.
I'm going to keep it short for now (you'll why understand soon), and write more later.
I stopped taking my celebrex a month ago, and cut my Imuran (immunosuppresant) in half. A few times, especially recently, I get out of bed without noticing that I didn't take my tramadol (pain med) and adderall- formerly REQUIRED in order to function just enough to get myself and my son ready in the morning. The changes were so subtle, slowly improving every day, that I hardly noticed. Then, this happened:
A couple of weeks ago, my family got sick, and we didn't get better. Turned out that we all had strep-pneumonia and were prescribed 2 courses of intense antibiotics. Unfortunately for me, antibiotics suppress the function of hookworms.... they don't die, but they apparently 'go to sleep'. Today is my 3rd day on this antibiotic (a sulfa). At 6 am, I woke with an intense, horrible, and searing pain in my joints. My fingers are swollen, so much so that the creases on some of my knuckles have disappeared. It even hurts to type, thus why I'm keeping it short. I can't even bend a few of them. My knee is so painful that I can't walk without a pronounced limp. My neck, lower back, shoulders... everything hurts!
It was such a shock that I immediately assumed I was dying or had some horrible reaction to my medicine. I almost called 911. Then, I realized it was raining, with a massive cold front coming in (not a good forecast for joint pain!), and it hit me: "OMG, the hookworms... the antibiotics.... they work! This is how I used to feel, almost every day. This was my life, not 6 months ago. How in Gods name did I manage to survive?" I immediately began weeping tears of joy... THEY. WORK.
Now this "song" is in my head:
Go Hookworms! go go! Go Hookworms! go go! its ur birthday, go go! , its ur birthday!! I think I made it up, but maybe it was implanted in my brain by the little guys. Parasites, you never know what they're up to!
The most unfortunate aspect of this is that the antibiotics can make them sleep for up to 8 weeks, Cry. Back on my Celebrex and Imuran I go, sadly, but also with joy. I now know that the pain is temporary, where I used to see nothing but bleakness and struggle in my future. I can't wait for the best Christmas present of all, which will be arriving in January... some more hookworms!! What more could a girl want?
"This American Life" did an episode on hookworms, and interviewed the original guy who started autoimmune therapies. VERY interesting story! I think its act 3 or 4
Resources:
Search "Helminithic therapy" on clinicaltials.gov to find peer-reviewed research articles (US research)
wikipedia page on helminithic therapy
Autoimmunetherapies.com
Healthline article on heliminithic therapy and Crohns
And to all of you, I hope you have a pain-free, energy filled day, and life! (parasite host or not ; )
Thanks for reading!
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Tags: fibro, chronic pain, spoonies, hope, fatigue, lupus, autoimmune, connective tissue disease, hookworms, helminithic, worm therapy, alternative health, homeopathic, fibromyalgia, parasites, hygiene hypothesis
Wow! What a journey! Sounds so interesting:) My 5 year old has autoimmune thrombocytopenia and autoimmune neutropenia. With his disease his body destroys his own platelets and his own neutrophils thus resulting in low blood counts.. Since his disease is so rare, not even conventional doctors know much about why this happens so all they want to do is push steroids. I wish I had the guts to try helminths with him..I just wonder if it would work. Your journey is very inspiring and I wish you the best of luck!
ReplyDeleteJuliansmom: thanks for commenting! I encourage you to contact autoimmunetherapies.com to discuss your sons case. Children tend to tolerate the hookworms well, and like I said, they are very easy to get rid of. I actually had thromocytopenia when I was a child (age 2) as well! I got it after a vaccine (I was sick at the time, so my immune system got out of whack). I was hospitalized for a couple of weeks, but I got better. I'm so sorry to hear about your son. I hope you do try the helminithic therapy; its a good 'last straw' treatment ;) I tried it after I became desperate, because nothing else was working. I hope your little guy feels better soon!!!!
ReplyDeleteI'm so sorry you have to go through the pain part of it but I'm glad there will be a light at the end of the tunnel. How often is the treatment? I hope your flare up isn't too long!! Stay strong and take this time to relax, be a couch potato and snuggle with your boys ;) ...you'll be good to go just in time for spring fever!!!
ReplyDeleteI actually feel much better already! It only lasted a few days =D I can't wait for spring!!
DeleteAre there any clinics in the US that give this therapy?
ReplyDeleteHi. I am thinking of trying this for my fibromyalgia. Now that it's two years later, I was wondering if you still felt that this treatment helped you? Also can you describe exactly what the treatment was and where you got it. How many doses, how many worms, the process, etc. I'm in the US, so I may have to do it DIY! Thanks!
ReplyDeleteFibromyalgia is a pain condition which is characterized by chronic widespread body pain, fatigue, and tender points throughout muscles, joints, and other soft tissues. These tender points can be located in the neck, shoulders, back, hips, arms, and legs. therapy and fibromyalgia treatment should be needed to cure.
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