Incredible improvements with Helminthic Therapy

sb4

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Hello,

I don't post here very often (ever ?). I've had CFS for over 30 years, and have been a patient of Dr. Paul Cheney for over 12 years. I had classic onset of CFS, following diagnosed case of mononucleosis at around age 19. I'd like to compliment Gyre for such a thorough treatment of this interesting subject. I too have been "hosting", as we wormies like to politely call it, for about 30 months now. I began by hosting rat tapeworms from Biome Restoration, and I can't say enough good things about them - wonderful folks. Then I transitioned to Necator Americanus hookworms. I got my first hookworms from the shadowy world of the "Hookworm Underground". I have no advice to people wishing to go that risky route, because I was extremely lucky. Like Gyre, I now do home grow.

I have seen some curious improvements to my health. But only small things really. So far, I have not seen any improvements in my major symptoms. However, I have been extremely cautious in my dosing schedule, building my colony size very slowly. In general, I like hosting, and I think it is simply part of a healthy lifestyle. It seems perfectly normal and natural to me now. I would continue to host, even if I did not ever see any specific improvements to my health. I believe, however, that there is still a good potential that this therapy will show significant benefits for me in the future.

So, that's it. Kudos again to Gyre for an even handed treatment of this subject.
So what improvements have you seen?
 

sb4

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You ought to be careful with colloidal silver. It can permanently and dramatically change the colour of your skin.

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Thanks but I have used it before and basically you have to do everything wrong to have that happen. I remember they did help my palps and Ive been meaning to start them again however don't want to immidiatley kill off the worms.
 

Hip

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It looks like in the case of Necator americanus, the immunomodulation it produces is more complex than just a simple Th1 to Th2 shift.

This paper found that a protein from Necator americanus binds to human natural killer cells, resulting in interferon gamma production. Interferon gamma is a Th1 cytokine that fights viruses and intracellular infections.

The paper says:
Descriptions of cytokine profiles from human PBMCs stimulated with Necator adult worm Ag have been reported only recently. These studies demonstrated a mixed anti- and proinflammatory response, characterized by IL-5, IL-10, as well as IFN-γ and IL-12.
———
This is the first report of a pathogen protein that binds exclusively to NK cells, and the first report of a nematode-derived product that induces abundant levels of cytokines from NK cells.
Note Th1 cytokines: IFN-γ, IL-12 and IL-2; Th2 cytokines: IL-4 and IL-10.


So quite possibly, Necator americanus's induction of interferon gamma in NK cells may help fight off the chronic viral infections associated with ME/CFS.

Dr Chia's interferon alpha and interferon gamma combined therapy was pretty successful in bringing some ME/CFS patients into full remission (though all relapsed several months after the end of this course of interferon therapy). So with Necator americanus, you may perhaps in effect be getting ongoing interferon gamma therapy to fight your viruses, and at a knock down price.
 
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<So what improvements have you seen?>

Well... I had long standing foot and ankle edema, with a rust color that extended from my shins to my feet, and also lots of toe nail fungus. Dr. Cheney speculated that the rust color in my skin was iron depositation from dying red blood cells. Anyway, that's all gone. And interestingly enough, I had a line on a couple of my toe nails, straight across the nail, where the fungus was gone and was being replaced by healthy pink nail. I looked up how fast toe nails grow (~ 1 millimeter per month), and it corresponded to when I began hosting. No more fungus. No more edema. No more rust colored skin.

I used to have some level of gut discomfort all the time, from mild to debilitating. That is mostly gone.

Then... well. My testicles started to grow, and my reproductive health improved significantly. Hey, I'm just saying.

The improvement in gut symptoms I would list as significant, for it was always occupying some portion of my thought life. It's hard to describe, but it's always there, bothering you. You can't not be aware of it. That's 90% better. Not completely well. But much better.

So, that's one important thing I suppose, and then some "minor" issues that improved. As I said before, I'm going to host anyway, barring any unforeseen difficulties or contraindications. I think it's just part of a healthy lifestyle.
 
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I can't lay my hands on the paper at the moment. But, from memory, I recall seeing that human adapted helminthes were capable of producing cannabinoids. It sort of makes sense that intestinal parasites would hit upon that trick, given the number of cannabinoid receptors in the human gut, and the down regulation effect on the immune system that could have. An interesting nexus between cannabis and worms.

I've heard it said that hookworms have a larger genome than the humans they infect. Some have speculated that they require this expanded genome to produce various bioactive peptides, blunting the immune response to their presence in real time, and "educating" other immune cells to ignore them for the future. There's a lot going on here, with much to be learned.
 
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Btw, I am unfairly undercutting worms here by talking around the margins.

If you want to get to the meat of things, in my opinion, you need to concentrate on helminth induction of IL-10 secreting Treg and Breg's. (Although, I had not seen the paper cited by Hip above, which is very interesting.) There are other things of course, like expansion of polyclonal IgE. A ten fold increase in IgG4, etc.. But for CFS, I think the rubber (probably) meets the road in Tregs and esp. Bregs. I am not the only person to independently make the connection between Breg expansion, helminthes, CFS, and Rituximab. If EBV loiters in the B-cells for a lifetime, possibly causing immune dysregulation in some people resulting in CFS, and Rituximab improves these cases by non-specifically causing B-cell depletion, thereby eliminating the principle cause of immune dysregulation, then would it not be sensible to hypothesize that another route of B-cell modulation could also be effective ? What is another route ? Breg inducing helminthes. Helminthes can induce strong Breg expansion, which basically tells the immune system to calm down and take a chill pill. (The paper cited by Hips seems to argue against IL-10 Breg induction as a primary immune modulation mechanism, btw. So, another, yet to be discovered, mechanism could be primary !)

http://www.jacionline.org/article/S0091-6749(11)00767-6/fulltext

Anyway, that's my 2 cents worth.
 
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Hip

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Breg inducing helminthes. Helminthes can induce strong Breg expansion, which basically tells the immune system to calm down and take a chill pill.

I found a couple of papers (here and here) saying that helminths can induce regulatory B cell expansion, but I could not find any info specifically about the Necator americanus helminth triggering the expansion of regulatory B cells.

Do we know if Necator americanus can trigger B-reg expansion?
 
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I found a couple of papers (here and here) saying that helminths can induce regulatory B cell expansion, but I could not find any info specifically about the Necator americanus helminth triggering the expansion of regulatory B cells.

Do we know if Necator americanus can trigger B-reg expansion?

That's a VERY good point, Hip !

If you will notice in the body of the paper I just added to my message above, from 2011, there is a section, "Human Breg Cells: Do They Exist ?". Based on this, and other papers I've seen from the time period, there has for some time been a question of the existence of human Breg cells. Therefore, it would not be surprising to me that these cells have been understudied. They have just recently come to the light of science - in humans.

So, apparently it's an open question. :) Do they, or don't they ?

I hate to be unscientific about this, but I'm going ahead and voting with my feet.
 
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Cheesus

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I found a couple of papers (here and here) saying that helminths can induce regulatory B cell expansion, but I could not find any info specifically about the Necator americanus helminth triggering the expansion of regulatory B cells.

Do we know if Necator americanus can trigger B-reg expansion?

To what extent do different helminths have different effects on the host immune system? Are the effects broadly similar or broadly different?
 
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To what extent do different helminths have different effects on the host immune system? Are the effects broadly similar or broadly different?

Yes, their effects are both, generally the same... and different. Generally, they have a global effect of telling the immune system to calm down and be more tolerant. But, they are different, in that some seem to be better at this than others, and some seem to have more of a localized effect. For example, human adapted hookworms seem to have a greater body wide effect on the immune system. Whereas, human adapted whipworms (Trichuris) seem to act more locally in colon. However, both have significant positive effects on the microbiome, perhaps, not unlike the famous return of wolves to Yellowstone National Park. (Worms fall into the category of the MACRObiome, and bacteria fall into the category of the MICRObiome.)

For myself, after reading for over four months on this subject very intensively, including "Epidemic of Absence" by Moises, I elected to begin with 5 small rat tapeworms from Biome Restoration (great folks). Rat tapeworms are the "gateway drug" of the helminth world. If they don't seem to agree with you, that's OK. They will die off of their own accord in the next two to three weeks anyway, since a human is not their natural host. So, I elected for the "soft approach" to start with. I took my 5 rat tapeworms, and the most amazing this happened. Nothing ! I didn't feel anything at all. Nothing.

You see, I am so exquisitely sensitive to practically everything under the sun that, being able to take ANY worms at all and not react was incredible for my case. And so it went. In fact, I did not really begin to feel the gears grinding on my immune system until I got up to about 20 rat tapeworms, taken every two weeks. Then I could definitely tell things were changing.

I hope this additional information helps. :)
 
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Can I make a small suggestion regarding your site. Your drop down menus are very difficult to cope with -- my eyes are quite sensitive to light. The backgrounds of your main page and your drop down menu are both white and it hurts the eyes and the text is very light which makes it difficult. It might be helpful for those with light sensitivity if you made the drop down menu a different color from the main page and made the text a bit darker or lighter depending what colors you choose. Interesting site. Thanks for the information.
@Kina, thanks again for the concrete suggestions. I've changed the main background colour to a light grey as well as changing the colours of the dropdown menu. I'd very much appreciate it if you were willing to take a look and see if you think the site is more friendly for those of us who are light sensitive. http://colonyofme.com/escaping-autoimmune-hell-helminthic-microbiome-immune-support/
 
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Just a question about your ME symptoms.. you mention fatigue a lot, but not PEM specifically unless I missed it. Did you also have post exertional malaise, after cognitive or physical activity?
Yes, the PEM was wicked. One trip to the grocery store would put me out for a whole week at one point. That was if I managed to go to the store at all, of course.
 
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There is an article here on the use of helminth therapy for treating depression:

Duke scientists treat depression with intestinal worms

Though some people find that helminth therapy can lead to depression or anxiety: see here.
My experience is that it has been fantastic for my mental health, but just like pharmaceuticals, you have to expect that some people will have better than average results and others will experience more side effects. Also, some people do better with one helminth type over others, so some experimentation may be required to find what works best. I understand HDC can feel more gentle to some than NA, not that I've personally had trouble with NA being rough on me.

As for the idea that most people seem to get worse after a couple of years on HT, that is not what we are seeing reported in the community. When people do get worse after that time, there seem to be two broad categories: either they have gone over their personal optimal colony size and seen a consequent reduction in efficacy (and need to terminate the colony and rebuild it to a lower maximum number) or they have taken one or a few doses then not redosed for too long. After you reach a good colony size of NA, adding a small new dose every 6-12 months seems to work best for most people, although some find theirs don't last terribly long in their gut environment and need to redose every 3 months.

@zippy890, any personal thoughts from you on HT and mental health?
 
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It looks like in the case of Necator americanus, the immunomodulation it produces is more complex than just a simple Th1 to Th2 shift.
Yes, there are a lot of theories about what is really going on, but no one knows the answer just yet.

I've got a "simplified" page on How HT works on the site now which says basically, "HT tells your immune system to chill out". I'm also planning a intermediate version, with Th1/Th2 info, then an advance version that says, we don't really know, here are some theories to read.
 
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Mental health ?

Um.... Yeah, I do have some things to say about that. Occasionally, I can tell that my hookworms are making me irritable. On the other hand, they can sometimes make me feel really Zen. On balance, I am MUCH calmer over all than before hosting, and I am thankful for that.

I want to keep emphasizing this, however. It is very likely that humans need to host worms in order to be healthy. It is an important part of a healthy lifestyle. With that said, is it good for any particular person to host worms ? Well, that depends. Is it good for people with CFS to host worms ? Nobody really knows yet.

But yeah, I am much calmer on worms.
 
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I want to keep emphasizing this, however. It is very likely that humans need to host worms in order to be healthy. It is an important part of a healthy lifestyle.
Double thumbs up. I absolutely agree. It all sounds completely bonkers, until you do the research. Then you think, "yeah, probably a good idea for most everyone."
 
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