Helminthic Therapy, the only thing to make a difference so far

[bad1080]

i been diagnosed with me-cfs after being misdiagnosed with depression for (too) many years, diagnosis of exclusion and through canadian consensus criteria. i think i had me-cfs for decades until progressive worsening left me unable to work or to even care for myself, mostly house-bound, bed-bound at my worst, bell score of 30. i tried all the supplements (the most common ones at least) but nothing was ever able to move the needle for me.

i started inoculating with larvae of the hookworm necator americanus (NA) after seeing a post on r/cfs about it by sheer luck and then doing months of research on the topic. after my first dose i had almost two weeks of full remission (i was riding my bike through the woods for 2h without experiencing PEM afterwards just normal levels of exhaustion and fatigue). apparently this is called a "bounce" and it may or may not occur. after having that kind of response i knew i was on the right track and stuck with it. the weeks after the initial bounce were tough with increased fatigue and intestinal discomfort but i started with only 3 larvae and that was a good idea.

the wiki says a regular dosing strategy is every 12 weeks but it turns out that is way to long for me, i lose benefits after week 6, so i dialed it down and down. i am still not at the point where i have continuous benefits dosing every 8 weeks but this time i decided to increase the dose to 5NA instead of my regular 3. additionally i am going to try and incubate my own larvae to be independent with my dosing and frequency (it also saves money). once i accidentally killed my colony with turmeric/curcuma, there are a bunch of foods with anti-helminthic effects (see the hookworm care manual for more information).

it is now somewhat established how an idle or under-conditioned type 1 immune response (for single-cell organism) contributes to oversensitivity and thus allergies (see "Hygiene Hypothesis" and "Biome depletion"). i believe the same is the case with the type 2 immune responses (for multicellular organism) and the plethora of inflammatory diseases we see today.

i been doing it for close to a year now so i have some confidence in saying this. subsequent doses are much easier to tolerate (but the itch at the inoculation site seems to increase each time) and even with my last dose i experienced 2 weeks where it put me from severe to mild. i was able to visit multiple shops in a row without much problems, where before just one was often too much for me. and then after coming home i was able to cook for myself without needing prolonged rest or not being able to cook at all the same day.
every time i lose benefits i am struggling to comprehend how bad i was before because the moment i do better i seem to forget how far down the me-cfs hole goes and can only seem to focus on how to improve even further, some humility is in order for me there. being glad i found something instead of pushing the envelope...

in his book Velasquez-Manoff theorizes the efficacy of helminthic therapy might be due to co-evolution with helminths for millennia, thus selecting genes which also carry diseases but which were mitigated by the symbiotic relationships with worms. but since everybody in the western world is essentially worm free nowadays those diseases are in full bloom.
so yeah when i first heard about it i never thought this is where i'd be now (or that i would try this at all) but i am glad i gave it a chance.

i should add that when i say "the only thing to make a difference" i mean to my crippling fatigue and the exhaustion. it also helps with inflammation, mood and brain fog but i had some success with supplements here too.

recommended literature:
-"An Epidemic of Absence" by Moises Velasquez-Manoff
-an article from 2022 published in nature titled "Effects of helminths on the human immune response and the microbiome"
-the wiki has tons of information and papers about the topic, best to start with the "reading packet"
-everything by William Parker (there are also a couple interviews and podiums with/by him on youtube, linked at the bottom of the page)
-Science - Type 2 immunity: Expanding our view

edits:
added clarification about "the only thing to make a difference"
added a paragraph about "Hygiene Hypothesis" and "Biome depletion"
added 2022 nature article to recommended literature
added william parker to recommended literature
linked "bounce" to the wiki
added science article

 

[Wishful]

The wiki doesn't mention beneficial uses of hookworms; someone should add that.

You mention an inoculation site. Can't the larva be swallowed? That would avoid all the burrowing through organs. You end up swallowing the larva eventually when they burrow through the trachea, so they're not harmed by passing through the stomach.

 

[bad1080]

You mention an inoculation site. Can't the larva be swallowed? That would avoid all the burrowing through organs. You end up swallowing the larva eventually when they burrow through the trachea, so they're not harmed by passing through the stomach.

the larvae of necator americanus (NA) can not be swallowed no (nor can the eggs), the hookworm has a specific life cycle it needs to undergo. i understand the skepticism about the burrowing, i had reservations myself believe you me. they can't get lost though, that's only a thing in an accidental or wrong host and they are human hookworms. the only length they burrow is from the inoculation site to the nearest artery, where they then get picked up by the bloodstream and are transported to your lungs. from here they have to be coughed up and swallowed to mature and complete their life-cycle. this has the added benefit of eliminating the risk of accidental dosing by ingesting eggs.

if it is any consolation the larvae are so tiny you can't see them with the naked eye. what it boils down for me (after overcoming the initial "ick factor") is a slightly worse mosquito bite (similar to a horsefly if you know those). i found a bandage with a painkiller paste on (either paracetamol or aspirin works just fine) gives me great relief once placed over the spot (only needed for 1-2 days). note this is from taking 3 larvae, larger doses may produce are more pronounced reaction (but are not recommended for me-cfs!).

there are versions of helminthic therapy (HT) where you swallow eggs though, those would be TTO and TSO (the "O" stands for ova = eggs). NA was just the easiest and cheapest form available to me. plus the ova variants don't (fully) colonize so they come with their own trade-offs.

there are currently only four species of helminths deemed safe for HT as they have to meet certain criteria. additionally i recommend reading the safety section of the wiki.

The wiki doesn't mention beneficial uses of hookworms; someone should add that.

not exactly sure what you mean but there is a large section of success stories (and failures) on the wiki, sorted by condition. note that these are anecdotal and not scientific by nature. a lot of the time i am missing dose and frequency from the reports but imo the wiki is by far the best resource on the topic. apparently there are some facebook groups (but i am not on FB so i can't recommend nor vouch for any of them) and there is a discord (links to support groups on the wiki).
the wiki has recently been restructured so articles might still move around and some parts might be broken. i am having a hard time adjusting to the new layout myself but the search seems fairly reliable.

edit:
-added support groups page link

 

[Wishful]

The technique is more interesting than I thought. I'll have to do more reading.

My comment about the wiki was about the necator americanus page. It only mentions it as an infection that needs to be treated, with no mention of use as a treatment for other medical problems.

 

[Wishful]

I was thinking about the claim by helminthic promoters that the lack of these worms that we evolved with is responsible for many modern health problems. Does that claim stand up to statistics from people living in regions where it's too cold for those worms? Do populations in the tropics really have lower rates of those diseases than people in northern regions?

I'm not saying worms can't be helpful for some people with some diseases. I'm just questioning whether the statistics supports the claim of the importance of worms to general health.

 

[hapl808]

every time i lose benefits i am struggling to comprehend how bad i was before because the moment i do better i seem to forget how far down the me-cfs hole goes and can only seem to focus on how to improve even further, some humility is in order for me there. being glad i found something instead of pushing the envelope...

This is always interesting to me. I look back at my journal from times I was doing better, and it's just filled with awful symptoms - constant migraines, GI, crashes, etc. I think we forget to save our sanity.

so yeah when i first heard about it i never thought this is where i'd be now (or that i would try this at all) but i am glad i gave it a chance.

Yep. It sounds bizarre to me when I've read about it, but so did buying unregulated peptides off the internet and injecting them, yet I ended up there eventually, too. So who knows.

I'm not saying worms can't be helpful for some people with some diseases. I'm just questioning whether the statistics supports the claim of the importance of worms to general health.

I think this is often a problem with various treatments. We may have technology to determine if something works or doesn't work (or just our own experiences), but when people start giving sweeping explanations for why something works or doesn't work, it rarely holds up to scrutiny.

 

[Slushiefan]

Thank you for posting about this therapy. It is, as was said earlier, more interesting that I thought.

I will be moving this from a quack theory to a therapy to seriously consider thanks to your input.

 

[bad1080]

Does that claim stand up to statistics from people living in regions where it's too cold for those worms?

the claim isn't "this one species will fix your problems" the claim is rather "the variety of organisms in our biome (the biodiversity) is decreasing and that turns out to be a bad thing" (thus "biome depletion" theory). and from the data Velasquez-Manoff analyzes in his book (multiple meta-studies with tens of thousands of people) that part looks irrefutable.

keep in mind that helminths are only one kind of organism and the species can (and likely will) vary depending on the region and climate. in sicily for example (one of the meta studies analyzed in which they found human genes naturally selected to deal with the prevalence of malaria in that region (an island)) it wasn't even a multicellular organism but a single-celled one:

Human malaria is caused by single-celled microorganisms of the Plasmodium group.[10]

from: https://en.wikipedia.org/wiki/Malaria
here the claim wouldn't be "malaria is good for you" of course not, the argument would be along the lines of: life in this region developed in regards to the variables of its environment, those variables dramatically changed at one point (when humans eradicated malaria) and there are consequences to drastically altering a biome like that.
i forgot what the consequences were (i think it had to do with arthritis but don't quote me on that) most of this is off the top of my head so i encourage you to do your own reading!

relevant to this: https://www.science.org/doi/10.1126/sciimmunol.aat1604

A vast array of disparate stimuli are able to evoke a type 2 response, including helminths, allergens, specific bacterial and viral infections, and even endogenous host molecules (1)

in regards to cold climate, they found parasites in oetzi's intestines:
https://www.smithsonianmag.com/scie...bugs-clues-ancient-human-migration-180957738/
https://www.smithsonianmag.com/smart-news/he-died-otzi-iceman-ate-greasy-fatty-meal-180969630/
if you were to look at e.g. wild penguins my money would be on them having parasites but the route of transmission would be different and not rely on a warm climate. to quote jurassic park "life finds a way".

let me add that "parasite" is likely a misnomer for human hookworms and they behave much more like a symbiont (the relationship is mutualistic) but as with everything they can cause problems with the wrong dose.

edit:
added the science article

 

[bad1080]

but when people start giving sweeping explanations for why something works or doesn't work, it rarely holds up to scrutiny.

the mechanisms behind helminthic therapy are poorly understood. but i think we (as humans) are looking at it from the wrong side, we ask "if we add x why is it helping z" whereas the question should be "why did z develop after removing x" and here the answer become rather clear "well, we removed x" so let's reintroduce it and see if it helps. and i know correlation is not causation but i am no scientist, all i have is my anecdotal n=1 but if you search for it you can find more of those reports: https://forums.phoenixrising.me/search/929952/?q=helminthic+therapy&c[title_only]=1&o=date
here is the one that initially set me on this path from r/covidlonghaulers (it was crossposted to r/cfs), it has a follow up in the comments.

Yep. It sounds bizarre to me when I've read about it, but so did buying unregulated peptides off the internet and injecting them, yet I ended up there eventually, too. So who knows.

desperate times and such

I think we forget to save our sanity.

could very well be, yeah

 

[Judee]

Some of the FB groups I am in say that parasites (and Candida) bind to heavy metals. I wonder if that's one reason for your improvement.

 

[bad1080]

Some of the FB groups I am in say that parasites (and Candida) bind to heavy metals. I wonder if that's one reason for your improvement.

idk that i have a problem with heavy metals (never been tested) so i can't rule that out. i grew up in the 80s and leaded gasoline was a thing and some toys probably still had lead paint on them. so i wouldn't be surprised but the way it ebbs and flows with the dosing frequency makes me think the effect is due to immune modulation. otherwise it'd mean i have constant reuptake of heavy metals which i doubt (e.g. water pipes are made from copper where i live and have been for decades and heavy metals are strongly regulated).
my brain is mush now, ttyl!

 

[Wishful]

whereas the question should be "why did z develop after removing x" and here the answer become rather clear

The problem is that x isn't the only factor that varied in the period of time when worm infections became less common; there were other major lifestyle and environmental changes. Isolating causative factors can be tricky.

so let's reintroduce it and see if it helps

That's proper science, and a good way to identify whether a factor is a cause. However, you need a suitably large set of subjects. If 10,000 PWME try the treatment and 9876 get better, it's strong evidence, but if only a few people report improvement, it's strong counterevidence.

I was actually considering the treatment, but it's probably too late in the year for me. The package would be too likely to experience low temperatures before reaching me.

 

[bad1080]

However, you need a suitably large set of subjects. If 10,000 PWME try the treatment and 9876 get better, it's strong evidence, but if only a few people report improvement, it's strong counterevidence.

like i said, i am no scientist, just a self-treater working with what we got. somebody else would need to do this study but since nothing here is patentable i wont hold my breath for anybody getting the funds to do it. there is an interview on youtube where somebody talks about the process and the costs involved in getting TSO approved in europe (maybe it was just germany) but i can't find it rn found it:

The package would be too likely to experience low temperatures before reaching me.

that depends on how long it is in transit. when temperature is a concern they usually get shipped with an isolation barrier and you can opt for express shipping to minimize the time they are in transit. it's best to talk to your supplier about it, they have the experience and can tell you what works and what doesn't.

 

[sb4]

I did this a few years back. I felt a little better afterwards but put it down to other treatments (TUDCA and something else). Is it possible the bump is just from "distracting" the immune system from latent infections or autoimmunity?

 

[bad1080]

Is it possible the bump is just from "distracting" the immune system from latent infections or autoimmunity?

i wouldn't call it a distraction if you give the type 2 immune response the thing to do it was designed to do (but maybe i misunderstood the question). i suspect the problems come from it idling and having very little to do in the "civilized world". just how people with an unchallenged type 1 immune response are more likely to develop allergies.
i just found this: https://www.science.org/doi/10.1126/sciimmunol.aat1604 and it's going to be my next read

 

[sb4]

i wouldn't call it a distraction if you give the type 2 immune response the thing to do it was designed to do (but maybe i misunderstood the question). i suspect the problems come from it idling and having very little to do in the "civilized world". just how people with an unchallenged type 1 immune response are more likely to develop allergies.
i just found this: https://www.science.org/doi/10.1126/sciimmunol.aat1604 and it's going to be my next read

I meant as in some people feel temprory relief from their symptoms when they catch a cold etc. Could be a similar thing going on there were after infection with helminth immune system gets distracted before setting on a new equilibrium.

 

[Wishful]

I had another thought on how it might work: the microbes that escape the larva's antiseptic treatment might benefit the microbiome. The microbes in the larva's digestive system are most likely to escape the treatment. I'm not sure how well that hypothesis fits the duration of benefits from treatment. If the duration matches the lifespan of the worm, then it's more likely the body's response to the parasite. However, there could be beneficial microbes that don't survive long in a specific human's gut.

 

[bad1080]

I did this a few years back. I felt a little better afterwards but put it down to other treatments

did you also use necator americanus? do you remember your dose? my last dose was 5 larvae for the first time (instead of my usual 3) and i have a lot more side-effects. keeping the dose low seems to matter a lot more than i initially thought. turns out staying on 3 for such a long time was the right call. even a slight increase like that makes a big difference in how well i tolerate them. i thought i was safe to increase after treating with helminths for 11 months now.

 

[sb4]

did you also use necator americanus? do you remember your dose? my last dose was 5 larvae for the first time (instead of my usual 3) and i have a lot more side-effects. keeping the dose low seems to matter a lot more than i initially thought. turns out staying on 3 for such a long time was the right call. even a slight increase like that makes a big difference in how well i tolerate them. i thought i was safe to increase after treating with helminths for 11 months now.

Just had a look and found my old posts about it on this very website:
https://forums.phoenixrising.me/threads/incredible-improvements-with-helminthic-therapy.48955/page-5

 

[bad1080]

about 4 weeks into my overdose of 5NA (instead of my usual 3NA) i finally start to feel a bit better. slipped into severe again for that time and was reminded how profoundly unfun it is...
cooked lunch for myself yesterday (was sick of eating out of the freezer)!