Delayed Post: Dose 3.

I’ve been meaning to update ya’ll for over a month but haven’t. 

On June 6, I received my third dose of hookworm larvae. This was my second dose of 50. They were alive and well. (cuz summer!) So, if all worms have persevered, I’m now hosting 135 of them in my gut. 

 And here’s a picture of the inoculation rash at day 4! 

  
Lovely, isn’t it? It was slightly painful this time around. A good portion of my forearm was swollen and bruised. And the itch! Yikes. It was bad this time. Those of us who brave helminthic therapy seem to have more severe skin reactions with each consecutive dose. 

And since I haven’t posted any progress notes from the ‘hookworm timeline’, I’ll do that to keep things interesting and more informative.

Weeks 12-20

Although some hosts have reported experiencing the start of long-lasting improvement at 7 or 8 weeks, the worms only really start to ‘work’, and symptoms begin to ease, at around 12 weeks. Allergies and asthma, in particular, generally (but not always) resolve between the 11th and 13th weeks. By week 20, the worms are usually in their stride.

I’m now at week 24. So quite honestly, I can still improve from here. 

I’ve had a few mild eczema flares on my hands and arms. These flares have been coming and going since March. I’ve had zero episodes of urticaria or hives since about February. The hives were pretty unbearable and I’m hoping they’re gone for good. 
And! I recently did an interview with an online tech magazine about helminthic therapy and my progress thus far. It was pretty exciting, I’m not gonna lie. I’ll keep you posted on that article if/when it’s published. 

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4 thoughts on “Delayed Post: Dose 3.

  1. Hi Stefanie, read the article on Motherboard and wanted to compliment you on your opinions, and in particular for the way you expressed them. Three cheers for the truth spoken clearly and with appropriate emphasis (that would be the swearing).

    I have read some of your blog, and plan on reading more, however I wanted to mention that while some people have credibly reported good results in as little as 8 weeks that is an outlier. While many do see a substantial improvement, with continuing improvements thereafter for up to 3 years, between 12-16 weeks after the first dose, that response time is by no means universal.

    There is some kind of Bell Curve describing response times. So while what you said is true, I would prefer you edit or add to it so that it is clear that at least half of those trying the therapy take longer than 6 months to respond, some up to two years. That while some see a sudden change, one day they realise they are no longer allergic to cats for instance, others will experience such gradual changes that they are often unaware of any benefits, it having taken almost two years for the change to occur. Until they lose their helminths to old age and see the return of symptoms they had fogotten they ever had, they remain convinced helminthic therapy had failed them..

    I would say one of the largest groups of failures we have are people who either did not read or did not understand the documentation, do not stay in touch, and based on stories online about people getting better in a couple of months and believing everyone has that experience if it is going to work, they give up. So it is a serious issue, and I would be very grateful if you could help me set expectations properly by editing the post a little.

    Based on one of my favourite papers it is quite clear that changes in cytokine levels, etc., continue for at least 24 months, and that symptoms and flares of the disease studied, MS, grow less likely over the first year, and that between 18-24 months remission is universal. So again, making sure people stay the course is very important, because some require higher populations, and I believe, and it is just me and I am not a scientist, etc., that many of these diseases, including asthma and allergy, have as one contributory factor a genetic adaptation to high parasite/disease burden environments, which means of course some have genes that confer a more effective immune response to helminths on the host. For that reason it is important you, and everyone else, stay in touch, and that ANY sudden worsening or return of symptoms, or even the sudden inexplicable belief you have lost some of your new friends, be reported to us immediately.

    That is another unfortunate, and quite common dynamic. An individual is doing great, say full remission, experiences a slight return of symptoms, and dismisses it as a temporary phenomena arising out of…. take your pick. Of course by the time the attrition of their helminth population has worsened still more, and the lag in the worsening of their symptoms has reached the point where they do contact us, they are sicker than they need be, and we have to essentially start over.

    Our dosing protocols, based on many factors, account for the possiblity of anaemia, and unless the host has an undiagnosed or occult anaemia or pro anaemia factor, it is not a risk. I am trying to say you should plan on supplemental doses of 25-40 every six to nine months. The benefits are various, you could reasonably expect to accelerate any ongoing improvements that may be available to you via helminthic therapy, if some other factor (say inadvertent exposure to nitrous oxide in food) damages your helminth population assuming they are not all killed you will be more likely to still host sufficient to maintain your health. But it also serves the purpose of ensuring you never experience loss of the entire population due to old age, and the return of symptoms again.

    Given genetic and epitopic variations I am sure some will take longer still to see results than I describe above, and I know of many examples where the early improvement was followed by very gradual improvements over the following years. So of course it is likely if not a certainty that some individuals will experience improvements only after 24 months, and true that many will see ongoing incremental improvements even after 3 years or more. I have.

    In fact during the first two years when we did not know very much at all compared to now two different people gave up after nine months and disappeared. They resurfaced at about the 3-year anniversary, their hookworms had started dying and their symptoms were returnning. The loss of symptoms in their cases had been so gradual they had not realised how well they had grown, when their hookworm died off due to old age their symptoms returned. They realised they had forgotten they had ever had them.

    On top of that I have been continuously infested (the correct term but I say infected everywhere, I gave up explaining it) since January of 2006, and I still see, sometimes quite profound, changes in my immune system’s reaction to various stimuli. For instance your description of the rash getting worse, which is universal because it arises out of the development of antibodies for hookworms, which are not present of course with the first, and often the second dose, was always incredibly strong with me. Even though I would not scratch it, within 3-4 days the skin would liquify and mascerate completely. However about a year and a half ago I applied a top up dose of 50 larvae, and had barely any reaction. So mild in fact that the first time it happened, I had one tiny pink dot and a few very small bumps that itched for a day or two, that I was convinced I must have killed them while applying them. This though I had transferred them from slide to bandage to arm, they do not get much “fresher” than that.

    However repeating the experience produced a similar lack of skin reaction. Though it did flare up when they attached in the intestines having matured around day 21. In fact that skin reaction, though still barely noticeable, was worse than the original as a result of them migrating through my skin.

    At any rate I have gone on, and in far more detail than you are likely interested in, for way too long, as I do. However if you could edit your post to let people know that perisistence is required by some, and that to know with certainty whether or not it might work requires two years. It is for this reason that we do not just sell doses by the way, we want people to commit to a long enough period, and have the support and access to information they need, so more people get what they want, to be well.

    Jasper Lawrence
    Founder, Autoimmune Therapies

    Liked by 1 person

    1. Hi Jasper,

      For some reason all of your comments had been judged by WordPress as spam. Why would that be? I’m not sure myself but I’ll try to be more diligent in the future with looking all all ‘spam’ comments myself.

      Thank you for taking the time to “go on as you do”. And I will certainly edit my post and make sure people are aware that my quick results are not so typical and that we must all be patient when treating with helminths.

      I certainly have room for improvement with my eczema. Hives are 100% gone and I realize I am lucky that they’ve disappeared so soon.

      Thank you for all you have done in the HT world. I am eternally grateful.

      Like

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