Part 2: Follow up on progress of “A”

This is, as the title suggests, one in a series of posts, almost entirely derived from emails from her family that they send me periodically to keep us up-to-date.

At the end of this post, and in a few minutes all the others, is a standard block of text with links to each part of the story of this child, as well as some additional information.

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I just got a fantastic, cheering follow-up email from the dad of “A” whose experience with severe Crohn’s, as a two year-old, and her response to whipworm for her problems are described in my previous post, and now here:

Here is his follow up email to me:

Quoting: We had the colonoscopy done yesterday with amazing results. The doctors first words to us after completion were “I’m now a believer in this therapy”. “A” had absolutely no signs of Crohn’s anywhere. She said someone else looking at her would think there was not a thing wrong with her. The worms were alive and kicking, and she gave us some pictures. [A’s Mom] and I couldn’t be happier, we wanted to jump and shout. The doctor said we should get more worms, and that the biopsies should be in within two weeks. She seemed very pleased as well.” end quote.

Pretty cool, eh?!

Of course this is remission, not cure, so if she loses her helminths she would get sick again, but I for one could not be happier.

Links to rest of series on “A”

“A” was under 2 years old when diagnosed with Crohn’s Colitis, and the disease appears from the family’s descriptions to have been severe and aggressive. They approached us when the recommendation for treatment from the child’s Gastroenterologist was one of the biologics, either Remicade or Humira, I cannot remember which.

Below are links to each of the four posts, so far, which for the most part are just emails from the child’s dad on “A’s” progress, and his thoughts and observations.

Managing the links between the posts has become cumbersome, so I have created this standard block of links to tie the story together, explain the context if someone happens upon one of the posts and does not realise they are part of a series, and will probably make a static page to aggregate the whole thing.

Part 1: Part 1 of the story of “A”

Part 2: Part 2 of the story of “A”

Part 3: Part 3 of the story of “A”

Part 4: Part 4 of the story of “A”

Recent test results for Jasper Lawrence

I am the primary reservoir for production of doses of hookworm and whipworm for AIT’s version of helminthic therapy, and recently there has been some speculation as to my current status re infection with Hepatitis, HIV, etc.

As you can see (you can download the test results here: “Jasper Test Results 10-2010.pdf”) I am negative for everything I was tested for. I had these tests in early October, 2010, they sent the letter at the end of the month. Being slow to post them was simply a matter of losing a letter in a move and then the holidays preventing my getting a replacement copy.

Although I think only a handful of people have ever asked me about such test results (in over three years of being in business providing hookworm and whipworm) those that do are very interested in the results. Perhaps others that are very interested don’t mention it for some reason? As I explain later, I am not sure such concern is appropriate.

Part of the delay posting these results was a desire to combine the Strongyloides results with those just posted in one post, but I have given up waiting for the letter. I have of course called multiple times about getting a copy but I am still waiting. We have also had a lot of problems with mail here for the last month because of the weather, so it is probable it was lost in transit. I will post it as soon as I get it, which will probably be tomorrow now I have relented and put these results up.

The only value in the test is to reassure people, falsely I would argue. Anyone preparing doses of this type for other people has to take steps as if the host is infected with everything, to do otherwise would be irresponsible.

The reasons for this are manifold.

First, you cannot test for every possible pathogen. I doubt I have enough blood for such a comprehensive panel, even if I had the money.

Secondly, a negative test result, unless the disease is an exotic, hard-to-encounter-unless-you-travel-to-some-weird place, organism like Strongyloides, cannot be entirely relied upon because most tests are for antibodies, not for the actual pathogen.

So there is inevitably a period of time, referred to as the Window, in someone recently infected who carries one of these diseases where they are not yet producing any, or sufficient, antibodies to show up on a test.

If you are at all familiar with the HIV test you already know this. The interval between exposure to HIV and being able to test positive is up to six months, and in rare cases say when there is coincident Hepatitis C exposure (or use of prophylactic therapy), even longer. Even if you are being tested monthly, or more frequently, for every human disease going, you still do not know whether or not you have picked up something since your last test, or if they are in the Window period.

Third, some diseases cannot be tested for, although the pathogen has been identified.

Fourth, some diseases clearly have an infectious component, but that vector or agent has yet to be identified.

So the results have no effect on dose preparation, and although it is reassuring to know that your reservoir is not a cesspool of human disease such reassurance is illusory.

What you should really be concerned about is whether the person preparing the dose has the requisite knowledge, skills and experience, and is caring and attentive each and every time they are in the lab.

After all if GlaxoSmithKine can screw it up in a multi-million dollar facility staffed with PhDs and highly trained technicians, who presumably were being inspected by the FDA periodically, then the most important factor has to be the professionalism and care of the person preparing the doses: http://business-ethics.com/2010/10/26/1740-glaxosmithkline-to-pay-750-million-fine-whistleblower-to-get-96-million/

Having said all that if it is important to you I am happy to submit to any test you desire, at any time, so long as you are willing to pay for it if you want me tested outside our normal schedule of once every two months, for the diseases given during organ donation.

Thanks,

Jasper