I know this is a total shot in the dark but… anybody want to give/lend/buy me a microscope?
No really, I’m broke and living on a grad student stipend, so I can’t afford one. But I’d really like one. I’ve been meaning to purchase a microscope for a long time, so I can keep tabs on my little ones by doing periodic measurements of their ova productions, by doing egg counts. Apparently egg counts can only provide general data–you can only get only a very rough estimation about population numbers, etc., based on egg counts. Still, it would a useful tool, and I think it would be interesting way to at least try to have some idea of what’s going on inside there. As any veteran helminthic therapy patient will tell you, one of the most frustrating elements to this therapy is the inability to know how many alive n kickin’ helminths there are inside, even roughly estimated.
Plus, I think it would be kind of fun.
I need a microscope like this, just a basic microscope with powers up to 100x (that’s the amount needed to be able to seem ova), I don’t care if it’s used, or if you stole it from your vet (actually, please dont do that). Maybe someday I can splurge on one of these microscope camera things and then I could post photos and videos online!
I’m serious. I get somewhere around 40-80 hits on this puppy per day, and figured someone out there has a microscope laying around that I can “borrow”, hangs out with scientists and/or geeks, or maybe one of you mysterious readers is rich and just wants to straight up buy me one 🙂
If you have any leads, please email me at:
Thanks, and keep on helminthin’
One year ago I sat nervously holding a tiny vial of microscopic whipworm ova. “Just drink them,” I told myself. I had gone this far, no looking back now—right? This was the final moment, months of research up late at night, anxiety over a new highly experimental therapy—my mind switched back and forth between excitement and doubt. I tried to imagine what life would be like without IBD, without the specter of sickness haunting me daily. In the previous five years, not a single day had gone by where I didn’t have to deal with being chronically ill. Even at my best, I still thought about it every single time I went to the bathroom. I worried everyday about what would come out of my body. I worried about it every time I sat down to a meal, wondering if I’d eat something that would aggravate my intestines. Each morning in the bathroom would determine my day—would it be a ‘good’ day where I could mostly go about my daily life, or a bad one, spent worrying about where the nearest bathroom is, stashing toilet paper under my car seat for emergencies. The most difficult part of having IBD is the invisibility of it–to almost everyone I appeared healthy and (usually) happy, and trying to negotiate the symptoms of my disease with that of trying to live a normal life was often exhausting and stressful. It is no secret that people with IBD often suffer from anxiety and depression, in addition to the physical difficulties and pain, and I was no exception.
Staring at the vile of whipworm ova, I knew it was the right thing to do. I had spent so many months and late nights researching this therapy, making sure it was safe, or at least safer than the drugs I was taking. The doubts remained, but I was ready. I said some kind of prayer, even though I’m not religious, and tossed back the solution of ova. No reaction, nothing. I watched some TV to ease my mind, and went to sleep.
Fast forward one year to today, and I’m in the best shape I’ve been in since my teenage years. I’m exercising every week, biking and running. I’m eating almost whatever I want (although still eating healthy) and have even almost gone through an entire bottle of Sriracha chile sauce. Most importantly, I’m having totally normal bowel movements. I’ve literally even invited people into the bathroom to look at my stools they look so good (oh the poor people in my life). My bloodwork is coming back normal, my C-Reactive protein is < 0.1 and I’m in total remission. The only thing of note is that I have elevated eosinophils, which is actually a good thing as it is a sign that I have helminthes inside.
A brief summary of my experience over the last year:
Two more new helminth blogs have started up! Go on over, bookmark their blogs, and wish them good luck!
Getting Healthier Now (using hookworm to treat UC, asthma, multiple food and environmental allergies)
Whipping Out Colitis (using human whipworm to treat UC)
I remember back in the day (a year ago) when I was the only helminth blogger using human whipworm for UC, and just one of a 3-4 helminth bloggers at all. I was so grateful that people had been blogging about their experience before me, which helped me realize that this was not some internet scam but a very real therapy with huge potential. I started this blog to ‘pay it forward’ so to speak, as well as have a nice record for myself. Plus, I enjoy connecting with others and talking about this therapy, and (eventually) do respond to all emails and posts.
One note: as bloggers writing about an experimental therapy, we all have a responsibility to be careful about what we write. Being clear that you are not giving medical advice and are not a doctor/expert is a given, but despite saying that, people give a lot of trust and expertise to those of us who blog by default. We all have a lot of anxiety about this therapy, a mix of desperation for success when things look good, and flipping to immediate despair the second something goes wrong. I like that some bloggers regularly write monthly (more or less) summaries to keep readers on track with what their experience has been like overall. It’s obviously interesting to write about your experience, but try to balance details with the long view–your readers want to learn about your experience, not read every thought or symptom you’ve ever had. I too remember when I first started I wanted to document every gut gurgle or perceived effect, but the therapy simply does not work like that (although it is good to write about the first month or two in detail, as people are interested in others’ reactions to the little guys). It’s one for the long haul, patience is key. Also, please be clear about the details of your therapy–how many helminths or ova you took, what date(s), which provider, etc., always useful. I get emails every week from interested readers, and am nearing 10,000 hits, so I do take my responsibility seriously with this blog, despite my less-than-serious parts that I include for fun. Thanks for reading & keep on blogging everyone!
A new helminthic therapy patient has just started a blog, “A Worm’s Eye View” to document her use of human whipworm to treat Ulcerative Colitis. I hate to be weird (oh shit I paid money for parasitic worms on the interwebs, started a blog about them, and then named them, too late!) but I get excited everytime I see a new helminth user start a blog. The more the merrier! No really, given the highly experimental nature of this therapy, it’s actually really useful to read others experiences, and I hope my blog does the same–’tis the reason I write it. Go say hi to Jenna and wish her well with her new “worm babies”.
I just noticed that my blog traffic has jumped significantly over the past week, going from between 20-40 hits per day to 200+ per day, surprised, I then noticed that many users were clicking on the Dr. Oz post I wrote a while back. I guess the Dr. Oz episode on whipworm therapy must have re-aired?
Anyhow, just to briefly follow up my last post, my BMs have settled back down to normal after a day or so of diarrhea. I’m pretty sure this was part of the initial stimulation that hookworm do to the immune system in the first month or two of hosting them.
It’s been exactly a month since my “top off” dose of 500 TTO and 15 hookworm larvae. I had gone on a three week prednisone dose just to blunt any side effects, but ended that two weeks ago.
Interestingly, yesterday I had my first real side effect–I think. I was feeling a tiny bit of nausea in the morning, and instead of passing my now usual solid BM, I had some watery D. Still, didnt feel at all like IBD-diarrhea, just normal D. I’m guessing. I’ve heard weeks 3-6 are often where hookworm can cause some upset, and also the one month period is where whipworm finish their maturation I believe. So I’m not too worried about it. Especially since I have not had any D since. I’m assuming that this side effects is a result of my new wormy comrades stimulating my immune system, which I’ve heard others report at this stage–as I’ve felt a bit run down, without any other symptoms.
Hopefully things will stabilize within a week or so.
Bombs away! Well, no ok. Helminths attack! Err, well, I guess I can’t really think of an exciting introduction other than to say that about a week and a half ago, on March 17th, I added in a new cohort of whipworm, about 500 TTO, and 15 hookworm larvae. My little comrades I’m sure have been happy to receive their new friends, although I really hope there is no generational rivalry going on, especially since the new hip youngsters are moving in. I really don’t want to deal with the issues of gentrified colonic real estate.
Two days prior, I started on a 20 mg dose of prednisone in order to blunt any possible side effects, and more importantly, keep my immune system from damaging the incoming helminths. This seems to be a perfect recipe, for me at least, as I have had nearly zero side effects since inoculation. I did have the classic puritic rash, from the 15 hookworm, and although it does not itch at all anymore, is still visible on my arm. My bowels have been good, although I have had a day or two of slightly loose bowels, which is to be expected. I will stay on the prednisone for another 2 weeks, as I taper down, and then be done with the stuff, thankfully. Otherwise I’ve been feeling really well, and have been going to work/gym etc. with no problem.
I honestly don’t expect to see any great changes from adding in this new cohort–the plan has always been to add in more about half a year after I first started. I was seeing excellent results from just my first dose, so with this second, I hope to have staggered the population age, and hope to have continued success. The small dose of hookworm, for me, is really just to see if I can host both organisms in harmony, as my long-term goal for this therapy is to have around 25 or so hookworm, combined with around 1,500 TTO, which I think is a good balance for me and my symptoms, and will avoid any possible problems of having too large of a helminth burden. Many of the patients on combination therapy (both whipworm and hookworm) have seen excellent results, and it just makes sense, to me at least, to try to have a diverse ecology of the little ones. Add to that eating a good diet with fresh food (I’m getting a CSA – Community Supported Agriculture share this summer for local fresh veggies), getting lots of sunshine and exercise, and hopefully I can maintain a good immune system balance, and overall health.
I really don’t want to change the name of this blog, and probably won’t, but I can’t say anymore that I just have colon comrades, since I now host helminths in both my colon and small intestines.
*My huge thanks to AIT, and in particular Dr. Marc Dellerba for his insights and help, as always. I have had many a great conversations with him, and it really makes this whole therapy much easier to deal with.
In two weeks I’ll be getting a “top up” dose of some more comrades (whipworm). This is not, I repeat, not because I’ve seen a loss of efficacy, or because I’m feeling sick. Quite the opposite, I continue to have solid BMs and am feeling very well in the UC department. I’ve planned on getting a “top up” dose ever since the beginning, as all the experiential knowledge from AIT points to 1,500 TTO as just about the ideal amount for most people. I’ve only taken 1,000 TTO, and will add in another 500 TTO.
Most exciting for me, is that I’ll be adding in a small dose of hookworm as well, 15 larvae. I’m doing this for two reasons; aside from UC, I’ve long had other, less serious but still difficult autoimmune-related problems; specifically GERD, which has been bothering me for years, and Lichen Planus (probably related), which is inflammation of the inside of the mouth, and I frequently get lesions. I have even seen a slight (could be totally random and unrelated) increase in these non-UC symptoms since starting TTO therapy.
My experience with whipworm is that, at least with 1,000 TTO, I have not seen an effect on anything but my UC. Again, this is huge and wonderful, but I think it’s worth trying out a small dose of hookworm, as hookworm appear to have a more pronounced ‘systemic’ effect, while whipworm appear to have a more localized effect to the colon. Probably such a small dose, 15, will have little effect. So this is really just a test to see if I tolerate hookworm along with whipworm. If so, maybe a ways down the road, I’ll add in another 15 or so to get up to a therapeutic range.
Also, some patients who are using combination therapy; both hookworm and whipworm together, have seen very impressive results with both, so this is not too ‘experimental.’
A reader pleasantly reminded me that it has been over two months since my last post that actually dealt with how I’ve been feeling. Although I like to post on related topics, the major aim of this blog is to document my experience, so here we go:
To summarize. It has been more than 7 months now since I inoculated with 1,000 human whipworm ova. After the first month I started to see marked benefit, but still had some bad days. At two months, my bowel movements had totally normalized. I mean totally. Starting after two months, I began having 1-2 BMs per day, zero blood, zero mucus, zero pain. My stools were totally formed and well digested. At 4 months, I tapered down the medicine I was taking, Colazal, to half a dose. At 5 months, I stopped completely. Since then, it has been “smooth” sailing, and I am continually excited each day when I pass a nice solid BM. It’s such a relief. My blood work is all normal. For the first time in 6 years, I no longer am taking daily medication. No longer must I carry around pills in my pockets and bag, swallowing 9+ pills per day, often to little effect. Nor more prednisone regimens that leave me exhausted, feeling sick or wanting to throw up. No more spraying steroid foam up my rectum in a vain attempt at quelling my inflammatory proctitis. Currently, all I’m doing besides eating a (mostly) healthy diet and some moderate exercise is taking some Vitamin D, some calcium/magnesium, and I drink peppermint tea. Oh, and course my little comrades hard at work.
The best part is the mental well-being that comes along with the feeling of having stable health. I’m far less stressed with work and school than I used to be. I’m more energetic, I’ve picked up jogging after a 5+ year hiatus. I admit to feelings of glee & happiness when I think about the potential for this therapy, and how it has, thus far, benefited my life–but I try to quickly remind myself that it is simply far too early to make any conclusive claims. I’ve just got to appreciate my health now, and hope that things continue. We all need and deserve hope, don’t we? Everyone with IBD, or any debilitating condition must slough through days, months–sometimes longer, without hope. If anything, this therapy provides a new hope for the millions who suffer daily under the (often) hidden burdens and pain of autoimmune diseases.
I wont now, or any day soon, say that this therapy “cured” me, and it is still way too early to have any idea about the long-term efficacy of this therapy. Sadly there are very few people that have used helminths therapeutically for longer than a year or two. The patient profiled in the scientific american article has been using human whipworm to successfully treat UC for 3-4 years now, which is encouraging, but this is ONE example. My hope is that in 3-5 years, we will have amassed enough experiential and hopefully scientific data to know whether or not this therapy can be effective to treat the disease for the long term.
In the interest of full disclosure. There have been two incidences over the past 5-6 months where I have had diarrhea. This is entirely my fault, as I am somewhat lactose intolerant (runs in my family), and in my new found joy of not worrying about what I eat, I have done stupid things like put heavy cream in my coffee, or eat cream cheese. Each incident lasted just one bathroom session, and things went right back to normal the next day.
A surprising note: I have a fantastic GI who is very supportive of this therapy (I switched to her from a ‘shitty’ one), and when I first got on board with her at the start of my therapy, I was her only patient who was actively trying helminths to treat Inflammatory Bowel Disease, although she had had a few patients inquire about it. I just saw her again last week, and as we talked about the increasing attention being given to helminthic therapy, she noted that she now has four patients actively using helminths!! I was shocked. That seems to be quite a good sign.
Hasta la victoria siempre, my little colon comrades.
*In the bizarre fantasy I have created to deal with the weirdness of this therapy, I’ve decided that my ‘little ones’ are latin american revolutionaries, fighting against colon(ial) imperialism (hehe) and/or intestinal inflammation, and thus I speak to them in Spanish. To be fair, they do come from central america, originally. I also like to call them comrades to challenge the concept that they are parasites–as for me, clearly they are not. Apparently I’m not the only “helminther” out there who names/makes up weird references/plays music for their helminths. Anyone want to admit theirs?
An interesting little piece on how our culture of hygiene, most extreme for girls, is having some majorly bad effects later on in life. Apparently, according to the ‘American Autoimmune Related Disease Association’, autoimmune disorders affect women three times more often than men.
Why Keeping Little Girls Squeaky Clean Could Make Them Sick, from NPR’s blog.