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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 4: The Story 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.

———–

From the child’s father:

“It has been over two years now since we began treating Crohn’s disease in our daughter, “A”, using helminthic therapy.

Specifically human whipworm, from Autoimmune Therapies, and she is today doing better then ever. She was around 21 months old when we started helminthic therapy, she had been diagnosed at 14 months of age, and had not responded to any attempted treatment of the disease, except steroids.

She is now over three and a half, and is as happy, healthy, and as beautiful as any parent could want from a child.

Two years ago my wife and I could have only hoped the future should be so bright for her, and us.

A has now taken four doses of the helminths, and each time her condition has only improved.

I can assure you it was not a straight line to good health, but rather a gradual improvement. Like any good, long term investment, there were setbacks along the way. Despite our better judgment, every time there was blood or diarrhea, in the back of our minds, we would wonder if it was the beginning of a major flare, one that would require the drugs we tried so hard to avoid for her.

But the reality was that it never even came close to that. There is no doubt she is doing better now then a year ago, and certainly two years ago. She continues to gain weight, in fact she is 34 pounds, and her stools continue to improve. We have even begun introducing different foods to her diet, with fantastic results.She can play endlessly with her sisters, is as cheerful as could be, and she is even a little chubby, something we’ll take any day of the week over the alternative.

She has not taken any medication for the Crohn’s disease since shortly after she began helminthic therapy.

Suffice to say, treating our little girl with helminthic therapy was the single best decision we could have made, given the circumstance. The treatment has enabled her to live a normal life with Crohn’s disease, rather then one riddled with pain and fatigue, pills, injections, and steroids.

It is not lost on our family, the thought that today we can focus on teaching “A” to read, and swim, and good manners, rarely worrying or even thinking about the fact that she has Crohn’s disease, instead of living in the bleak future we imagined for her, and us, two and a half short years ago.

I’m proud of what we did for her, and we’re thankful to Autoimmune Therapies for the opportunity to do it.”

End of email.

As it happens I am proud too, particularly of those who work with me to do this. I talk a lot, too much perhaps in the past, of the sacrifices my family has made. Far too little has been said about the team working with me.

All, in different ways, are making very considerable sacrifices to be able to make sure people like “A” continue to get the probiotics they need. Our chief scientist, who had a very good career before I came along, has essentially sacrificed that to peruse this. That is just one easy example to identify and explain.

One day soon I hope that it will be possible to acknowledge their courage, the risks and sacrifices they have made, and to do so completely publicly. I am the figurehead for a group of people who are all intelligent, hard-working, dedicated, principled and very high-integrity individuals.

All intelligent enough to not want their name to appear on my blog.

Here’s to hoping that will one day change and their accomplishments and courage can be lauded publicly.

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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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