Citizen Science

We started helminths, necator americanus (NA), back in July 2011. The little one did awesome on a low dose (10 NA), one day of stomachache. I took 25 NA and was not so fortunate. It seems the people with fibromyalgia/ POTS/ CFD/ narcolepsy do poorly with doses of helminths most people can handle. I had 2 weeks of diarrhea and at the same time my POTS got really bad. My stool showed massive amounts of charcot-leyden crystals. So I took antibiotics and started over at a very low dose in October. That went well and I added a few more NA, bringing my total to 11 NA.

I also took 500 trichuris trichiura (TT) in June of 2011 with no problems. The antibiotics I took for the NA should have killed the TT, but a few TT hung in there (I confirmed with stool checks).

My helminth use is under the medical supervision of my allergist. Jr’s helminth use is under the supervision of his allergist, GI, and pediatrician.  I haven’t seen any benefits yet, but the little one seems to be having great results. A huge increase in fine motor skills. His stools are firm and regular even though I got lazy with the magnesium and flax. He is now potty trained for #2, which is a miracle, after all those surgeries and years of diarrhea.

We are also using Prescript Assist and Saccharomyces boulardii about every 3 days. All systems are go. No more seasonal allergies, and viruses come and go with few symptoms (compared to ending in secondary bacterial infections). He’s flying through his food exposures with no problems.

Now he has finished the slowly increasing nut/sesame exposure. He had been eating 1/4 teaspoon of mixed nuts/sesame every day for several weeks. Seems to tolerate very well. I am still not sure if the nuts and sesame were false positives, as he had eaten them before with no IgE symptoms. But this is EoE we are dealing with, with no reliable way to test which substances are triggering the process. Hopefully with the helminths downregulating the eosinophilic response, and the probiotics and helminths creating an anti-inflammatory milleau in the dendritic cells in the GI tract, the foods will no longer trigger an eosinophilic response. I am using a Larabar cut up into 10ths as maintenance dose for peanuts (peanut butter cookie) and treenuts (apple pie), and a sesame bar for sesame maintenance.

It’s delightful to think that he will be able to get rid of the allergies. The next step is continuing chicken/turkey/lamb and fish/seafood exposure. When he gets to the max dose of those, I think I will make some kind of meatball or nugget for him to eat every day. I plan on keeping him eating these things for 3 years to permanently change the immune system. After he is able to tolerate fish, he will have skin testing redone. If skin testing is negative, we will rescope.

The allergist is excited. Little one’s blood eos had been high, holding at 10-15% with no parasites on board. After the first dose of NA, they shot up to 19%. Last week they are back down to 10%. Let’s just say for example most people with helminths have eos at around 10%, and my son averages around 10%, so you would expect my son’s blood eos to be around 20%. But the NA release chemicals that stop the eosinophils from migrating into tissue, along with other chemicals that downregulate the anti-parasite response. It seems the chemicals are being released and stopping the eosinophils. It’s just amazing to me how much this is affecting his brain for the better. Hopefully the gut is responding the same way.

I am in touch with a few other families that are using NA with EoE and EGID kids. Most need benadryl or prednisone to get through the “worm flu” stage where the body is attacking the helminths, before the helminths reach the stage where they release anti-inflammatory chemicals. This stage is around week 5-6 after infection, when I had a hard time. After this stage helminths are well tolerated, causing no symptoms. The only other problem would be too many helminths, this would cause anemia. So this is why my son and I get regular blood tests. No signs of anemia. In fact, I had been dealing with anemia on and off for a few years, but then I started on the paleo diet and have not had any more anemia. You could say we are taking primal living /natural parenting all the way, even replacing our lost helminths. The little one is very loved, and his health is well cared for. He has never been as healthy as he is now with a few of his lost friends back in business.

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5 Responses to Citizen Science

  1. CW says:

    Hi eosinophile,
    I am following your blog with great interest. I have a son with EoE and still struggling to keep him stable. I would like to read in more detail how you went about with the NA therapy for your son. What success are the other families having and how old are the children.
    You are a lonely voice in the wilderness at the moment, but I feel people will gradually come round to appreciating using this therapy in the absence of alternatives.
    All the best,

  2. where did you get your na and tt?

    • eosinophile says:

      I picked up a stool sample from a donor. The donor showed me labs tests showing they did not have infectious diseases such as HIV and Hepatitis. I wanted to be sure of exactly what I was getting and how much, by raising the larvae myself.

      There are two companies outside of the US that offer NA and TTO. WormTherapy.com and AutoimmuneTherapies.com

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