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Pathology labs are utterly useless

Pathology labs are so utterly useless, it was quite disturbing to discover out how bad they are, repeatedly and in so many ways for so many types of tests.
When I first got back from Africa convinced I had been successful infecting myself with hookworm, because of multiple rashes and a night of violent coughing, I tested negative 3 times in a row at a lab in California.
I was convinced I had failed. I was crushed. I was broke.
Then my allergies and then my asthma went and I began to wonder, and I bought a microscope.
After that, I had multiple tests over the next year or so with different labs looking for one that knew what they were doing. I was being asked to prove I had hookworm, and everyone thought as I had that it was a simple test.
You can imagine, back then there were no blogs, almost no news or research, and a lot of people thought I was lying. After all, where were the test results?
Later on, I wanted to be able to refer clients to an independent lab, a lot of people were preoccupied with McMaster egg counts, worthless though they are. As well as to confirm their ongoing infection with hookworm.
I did not want to do stool tests because it was going to be believed I was just making results up. A lot of people did not believe we actually had worms back then is what I mean. One client when we first started providing whipworm who lived in San Francisco, ninety miles to the north, insisted on visiting to view some ova through a microscope. Some decent independent testing would have been useful.

Some decent independent testing would have been useful.
I have only ever tested positive once with a third party, the Clinic associated with the Liverpool School of Tropical Medicine, this was after we had had to leave the USA and fully four plus years after I went to Africa and more than two years after I went to Belize. That clinic even gave decent estimates of my worm burden for both Hookworms and Whipworms, as in Heavy of hookworm and moderate for whipworm.I imagine lab techs are people who “know” no one in the States or Europe can possible have a helminth infestation.

I imagine lab techs are people who “know” no one in the States or Europe can possible have a helminth infestation.

So when a sample comes in from someone wanting a test for hookworms and they say they have not travelled abroad in the last three years, in the Tech’s mind the person asking for the test has to be obsessive, a Hulda Clarke acolyte.The Tech does, at best, a cursory examination of a single slide, wretches a few times, and bins the sample, ticks “Negative” on the carbon paper form and then furiously washes their hands, and liberally applies hand

The Tech does, at best, a cursory examination of a single slide, wretches a few times, and bins the sample, ticks “Negative” on the carbon paper form and then furiously washes their hands, and liberally applies hand sanitiser.That is how I imagine it goes most of the time, at $90 a pop.

That is how I imagine it goes most of the time, at $90 a pop, with three tests at two week intervals the recommended way to test for parasites.

We had another experience where a client went to their doctor, the client was nuts by the way, convinced they had a deficiency disease, and the Dr. ordered blood work.At the time I was working with a clinical pathologist, someone who ordered and interpreted sophisticated tests for doctors, and had done so for years working for the National Health Service here in the UK.

At the time I was working with a clinical pathologist, someone who ordered and interpreted sophisticated tests for doctors, and had done so for years working for the National Health Service here in the UK.On the basis of the blood

On the basis of the blood results the doctor ordered iron infusions, and a regimen of supplementation for things like magnesium.The client went nuts.

The client went nuts.The client very shrilly blamed her predicament on hookworms and on me, it was still early days so I wasn’t equipped to refute both her and a doctor or so I thought. She was fulminating online and everywhere that we were a threat to life and limb, grossly irresponsible, etc., etc.

The client very shrilly blamed her predicament on hookworms and on me, it was still early days so I wasn’t equipped to refute both her and a doctor or so I thought. She was fulminating online and everywhere that we were a threat to life and limb, grossly irresponsible, etc., etc.So we obtained a copy from her of her blood results, and according to the clinical pathologist had they been correct the blood could only have been drawn from a corpse.

So we obtained a copy from her of her blood results, and according to the clinical pathologist had they been correct the blood could only have been drawn from a corpse.The Dr. had not noticed, or more likely had decided it was easier to treat a condition that did not exist than to confront the lunatic.

The Dr. had not noticed, or more likely had decided it was easier to treat a condition that did not exist than to confront the lunatic.The lesson of this story is that you should always obtain a confirming test when lab results indicate anything other than a mild course of treatment, iron infusions are not mild. You can apply the same reasoning to the opinions of doctors. I never go myself, but when I do and if a diagnosis is rendered I will definitely be getting a second opinion and a new set of tests.

The lesson of this story is that you should always obtain a confirming test when lab results indicate anything other than a mild course of treatment, iron infusions are not mild. You can apply the same reasoning to the opinions of doctors. I never go myself, but when I do and if a diagnosis is rendered I will definitely be getting a second opinion and a new set of tests.

If you doubt me maybe you should do some searching, here is one link I found by Googling “number of misdiagnoses per year USA”.

http://ow.ly/KcPw309TWaq

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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.

———–

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”

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Follow up on progress of “A”

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 below 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.

Jasper

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Why helminthic therapy is so cheap

I have seen a lot of posts and received a lot of emails about what we charge over the years. It gets tiresome having the same conversation once a month or so, so here is an explanation I am hoping I can just point people to in the future when the subject comes up.

Believe it or not they come down about equal between our prices being a remarkable bargain and those who believe it should be a lot cheaper.

Before I get into it let me remind everyone that it is our objective to popularise this therapy to that it becomes widely available, and in so doing to drive down the price. The only way to accomplish what we want requires a strong and dedicated company focused on nothing else. That in turn requires people work on it full time, the only way we can pay for that is to charge prices which will allow it. Michelle and I do not own a car, or a house, we have no savings or insurance, all our possessions fit in two back packs. We own and have next to nothing. No one here is even comfortably well off. So if you are pissed off about what we charge console yourself with the knowledge that we are broke.

For those of you saying to yourselves “if they cut the price people would buy more helminths and they would make way more money”, think again. This is not price elastic, that is total sales will not rise enough to compensate for any cut in price, in fact the opposite is true. This is price inelastic, we would make more money if we raised our prices, and we would work less, too. Most people do not base decisions on medical care on price, primarily. They are focused on quality of service, safety, efficacy and want a trustworthy provider. No one offering cut-price helminths would be able to offer the level of service and support we do. “Cheap blood sucking parasites over the internet from strangers available here! One time clearance sale, this week only!” I don’t think so.

Those who believe it should be a lot cheaper, I am often quoted prices of $50 or so as being reasonable, obviously have no understanding of what it takes to provide a product or service. All they see is the raw material cost, and having no experience running a business they have no idea about all the other factors that go into price.

I don’t believe this is the place to explain issues like fixed and variable costs, amortisation, marginal pricing, overhead, arbitrage, competitive vs. cost-based pricing, etc. Suffice to say the cost of real estate, marketing, insurance, equipment, materials and chemicals, marketing, sales, hosting, legal expenses, risk, profit, fees for hosting and credit card processing, and many others all go into price.

Nor do I believe that anyone is that interested in a detailed price comparison of helminthic therapy with competing therapies. But as an example Tysabri for MS costs about $140,000.00 over five years for the drug alone, never mind the blood tests and medical care also required. For the same period of time, safer and with better results for MS, you would pay $3,050.00 (2010) for hookworm from Autoimmune Therapies.

Nor is that comparison exceptional, it is the norm. You would pay about $55,000.00 for TSO over five years. Over ten times what we charge, and the only directly comparable therapy available.

By those measures our prices are very low.

Risk is another issue that affects price in any business. Think of various third-world agricultural commodities like Copra or Cocoa, Palm Oil, Coffee, now think of those third-word agricultural commodities that are not available from the corner store. A similar dynamic is at work here, and reasonably so given our flight from the US and our likely lifetime separation from our children.

Would you be willing to sell something cheaply that might result in your going to jail? Again, I would argue that on that basis our prices are very low.

Nor do we just sell helminths, a host of necessary services go into providing helminths, above and beyond dose preparation, particularly when one’s goal is more than turning a profit:

Information: before and after the sale, not just providing it but gathering it to improve what everyone wants, the rate at which people get better and the degree to which they when they respond. Formulating protocols to deal with every eventuality post infection. All of that takes a lot of time. Surveys, aggregating the results and trying to draw conclusions about what the information means. At some point in the future all that will be known and understood, and it will no longer be charged for.

Tailoring therapy to the individual: This is not a therapy where one dose fits all, it goes beyond balancing the desire for the biggest therapeutic impact on the first dose and avoiding unpleasant temporary side-effects from taking too many the first time. When someone buys therapy from us they are not just buying a single dose of helminths. They are buying that and the ability to add supplemental doses within the first year for just the cost of shipping, a 25% discount on supplemental organisms, reinfection for just the cost of shipping if they lose their infection, a 25% discount on then current prices when reinfection becomes necessary in five or so years when the first dose dies of old age, consideration and advice by us regarding our observations on the use of traditional therapies in conjunction with helminths, our experience reducing dependence on other drugs and how best to go about it, etc.

We promise everyone that we will do whatever is possible to make them well, and we do exactly that.

Discounts for those deserving: In the last week we decided to provide combination therapy for free to a sixty-plus year-old woman with primary progressive MS who is on social security. Those with the ability to pay full price are in effect paying for her therapy, and we have done this more than once.

Programs for unstudied diseases: before leave the US we provided therapy on a deferred payment basis to anyone with a disease, like Diabetes or Rheumatoid Arthritis, for which we had no experience and for which there is no science yet. Those with diseases we believe could respond were able to obtain therapy for just the cost of shipping. If after a year they decided it had not worked if they told us they had eliminated the helminths they owed us nothing. If they decided to keep them because they had benefited they owed us for therapy, with the option to pay over time.

We did this, and a successor program where therapy is discounted by almost 2/3, because we are working constantly to expand the amount of information on helminthic therapy’s potential, which we believe is enormous, and to add to the store of knowledge. We are able to do this because of the fees paid by those willing and able to do so.

Variability in the level of service required: Rather than charge for each of our services currently included in the cost of helminthic therapy: replacement of doses blocked or lost in shipping for free, reinfection for the cost of shipping regardless of the cause of the loss of helminths, stool tests to confirm infection because most western labs are incompetent to do the test, ongoing advice before and after treatment for as long as the client hosts the helminths, discounts on future purchases of any therapy we sell, access to a private forum, blog site and mailing list, setting up and managing this forum and various sites with information about this therapy and the issues surrounding it, we included those costs in the price of therapy.

We do this because response, what is required to get well, varies so much from person to person, and because people would be unwilling to pay for all these services individually, and because there is no practical way to cleave those services from the provision of the helminths in terms of pricing. This of course means that some people are paying for services they many never use. But many others are receiving services beyond that which they paid for, and if we did not roll all those services up in the price it would be too confusing to be able to sell, and less efficient.

People are not buying hookworm or whipworm from us, they are purchasing the chance to be well. There is far more to accomplishing that, and maintaining it once attained, than just shipping some hookworm or whipworm.

You can argue that you may not want or require those services, but we are not willing to abandon our goal of making this therapy accepted, or our goal of 100% response rates for all diseases we routinely treat. To do that we need to steer a course that is quite particular, and that requires us to behave as we do. If you don’t like that you have the option to obtain helminths independently of us.

Take one example of our experience and why we believe our approach is required: Debora Wade’s, who I feel comfortable discussing because she is so open about it and has documented it so extensively online. Debora purchased Multi-dose therapy from us when it did not exist. That is we created multi-dose therapy, where treatment with hookworm consists of 3 or more doses over time, at her request.

We planned on providing her 3 doses, but we priced it on the basis of two doses, that is we did not charge her 3x single dose therapy, we charged her 2x because we believed it was too expensive. Not that we did not feel it was justified, we were expecting to do three times the work. We ended up providing her with around ten doses at no additional charge. I also took risks at the time, which she had not paid for, to provide her with helminths at her home because the impact of travel on her health was so great.

After improving initially she lost her helminths after about six months, and because her side effect reaction had been so strong, and because we mis understood one another so badly and she did not trust me she was afraid to reinfect. I persisted, despite many differences between Debora and I, and at great cost to us in many ways, and was finally able to persuade her to reinfect bout fifteen months ago.

We spent so much time on Debora’s case, man-weeks or -months, that even though Debora paid almost $8K to us we probably ended up earning minimum wage or less.

The result is that Debora has reported to us in the latest survey that her response, in her own words, is a 4.0 out of a possible 5.0, where 5.0 is drug free remission (I asked DW’s permission to publish her survey result). Obviously this might change, for better or worse, as we do not have long term information.

Doing this for Debora required countless conversations and discussions with her and internally here. It required a great deal of thought, and argument, and research. Finding, downloading and reading and discussing dozens of scientific papers. The background was an often shrill and very public series of arguments between Debora and I.

A lot of sleepless nights thinking about it, worrying about her and how to make her well, about whether or not it would work. How much do you think a doctor would have charged for such a service?

I am certain that no other business or group of people would have persisted with Debora at such great cost in the way we did.

We did so because to be able to treat Crohn’s effectively we needed to learn how to treat Debora successfully. We learned things we use with every Crohn’s patient we have, things that have raised our success rate and improved the end result for many, when if we had just treated her as an opportunity to sell some helminths her case would have been a failure from which nothing would have been learned. if we just sold helminths as cheaply as possible as so many advocate I know this therapy would not be as advanced as it is, and it may have disappeared. The information we gather and provide is crucial to helminthic therapy’s development and success.

When people buy therapy from us they are getting the commitment that we will work tirelessly and do everything we reasonably can to help them get well. We are not just simply selling them a package of hookworms or whipworms.

Did Debora pay a lot of money? Yes. Did we make a lot of money off Debora? Not on an hourly basis, no. Was it worth it? Yes, if viewed from our point of view.

From Debora’s point of view? I have no idea. But I do know that after over twenty years and countless traditional drugs that Debora’s Crohn’s is doing very well for the first time in a long time, and thanks to hookworm alone.

We have done the same for others as for Debora many, many times. We will continue to do so.

Over time we have adapted our treatment protocols, added whipworm to deal with Ulcerative Colitis, and adapted our policies. At each step this has been to the benefit of our clients, and to our sometimes substantial cost.

Once we had obtained whipworm we offered them for just the cost of shipping to every one of our existing clients to that point, so that those who had not benefited from hookworm alone or who had only seen a partial result could have another shot at getting better.

Do you think other companies or people would have made that choice? Do you think that having failed with hookworm people would have been prepared to pony up for whipworm even if prices were lower? I don’t, and all those failures with hookworm we turned into successes with whipworm would not have happened, would not have become part of the public record if we just treated this as an opportunity to sell helminths at the lowest possible price. Helminthic therapy would not be as far advanced.

It is our policy that this process will repeated if we ever acquire other potentially beneficial organisms. This has resulted in some of our UC clients getting better when hookworm alone proved to be of no use for Ulcerative Colitis for just the cost of shipping to that group. They did not pay for this when they bought hookworm from us, and had no reasonable expectation that it or any other organisms would be offered in this way.

At some point helminthic therapy will be widely available, and the situation will have changed so that instead of being an experimental therapy regarded as lunacy by most it will be accepted as something obvious, as part of the medical landscape. When that happens the cost of therapy will no longer includes so many factors, like risk or the acquisition of knowledge or providing it to the client. Those services will be provided to you by your doctor, not by whatever company will be selling you helminths.

Which is something else to consider, pioneers like us do not profit from their efforts, it is those who follow. We have no expectation of getting rich, and if you are interested we are broke.

If anyone disagrees with us in terms of pricing or our policies they always have the option do obtain helminths independently of us and to start a business selling them, or, to give them away if that is their wish.

What they do not have the right to do is to criticise our prices when utterly ignorant of the factors that go into our pricing and without consideration of the services we provide surrounding the delivery of the helminths themselves.

Every time someone expresses an opinion here many people will read it. Many are not equipped to evaluate what they read here, they see opposing view points, worry that we don’t know what we are talking about or that we are crooks, and make the best decision they can based on the available information.

You may be raising a valid point, you may also be putting off dozens of people who are seriously sick who we could make better, and who may chose not proceed with helminthic therapy because you have posted something that frightens them that has no basis in fact.

If you sincerely disagree with our point of view, or believe that while it is valid there exists a place in the market for a company providing helminths without all the supporting services, you are welcome to do so.

Go to the tropics and risk violence and infection with diseases you don’t want.

Learn how to use a microscope, centrifuge and micropipette, and buy all of the above.

Buy and learn how to use the chemicals and antibiotics required.

Learn how to set up and administer a web site, databases, security, back-up and redundancy, and a business entity and associated bank accounts and ability to process credit cards suitable to do what is required.

Learn how to advise people on what dose to use, which organisms are appropriate for their disease, age, gender, etc.

Research and write various web sites to provide supporting information, create and manage an online forum or forums to create and support a community.

Accept the responsibility that goes with offering something like this when profoundly sick people, often at the end of their financial and physical ropes, are depending on you. When you are the last hope for someone facing surgery, death and bankruptcy, lie in bed at night considering every syllable of what you say to them.

Don’t forget about their spouses, parents and children who are in turn dependent on them, and therefore, on you.

Accept the risk, as we did in advance of it happening, that the FDA or similar may drive you away from your children, your home, the place you have lived your entire life.

Set up a travel bag with everything you will own if such a thing happens, and put a few thousand dollars in it so you can get to a safe place, remembering that everything you own will be contained in that bag and that that money will be all you have.

Remember that even calling your children could expose you to arrest.

In addition remember that you will be working in an environment that is very different from the one I saw when considering this. More research, more widely discussed and understood, many websites and blogs discussing this, news and media coverage. You will not have to sacrifice your career, mortgage your house, endure ridicule or doubt as I did, or impoverish your family, in an environment where there was very little evidence to support your ideas and beliefs. No one had seen their asthma go into remission before I started doing this, never mind their Crohn’s or MS, their Ulcerative Colitis or Sjogren’s. None of these things were known.

When you take that responsibility and do all those things, then, and only then, if you still disagree with our pricing you will have earned the right to debate us on the issue of pricing.

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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