In nine months, I've gone from being bed/couch bound to an increasingly normal life using helminthic therapy. There doesn't seem to be much about this here in the forums so I wanted to put it out there. You can read the long version of my story here at a new site I'm working on to get the word out. I'm putting the easy to understand brain fog friendly version of info out there now, but will get deeper into the science of it as I go on. The links to 400+ peer reviewed papers and the Helminthic Therapy Wiki available on the site will provide you with all the science you need for now.
In addition to helminthic therapy, I find following the AIP diet and continuing with Freddd's methylation protocol are crucial elements for health for me as well.
That's quite some improvement! Congratulations! Sounds like you've gone from severe ME/CFS to mild ME/CFS as a result of your helminth treatment. Does that seem about right? So that's a two level improvement on the scale of mild, moderate and severe.
Yours is the first ME/CFS story I have come across where there was improvement from helminthic therapy, and in your case, a very major improvement. Would you know any other ME/CFS patients who have improved through helminthic therapy?
Is your ME/CFS a fairly typical case (do you satisfy the CCC definition of ME/CFS for example)? And can I ask, did your ME/CFS start with a viral infection episode, as is often the case, or was there some other triggering factor? Have you been tested for chronic infections, and if so, do you have any active viral infections?
Is it possible that rather than ME/CFS, you could have another ME/CFS-like disease such as celiac disease? Celiac is known to respond to helminthic therapy, but I have not seen any research indicating that ME/CFS responds to this treatment. So that's why I am asking if you feel sure you have ME/CFS, because this is the first account I have seen of ME/CFS amelioration through helminthic therapy.
If we know with reasonable certainty that you do have ME/CFS, then your great success with helminthic therapy may open the doors to other ME/CFS patients wanting to try helminth treatment.
May I ask the cost of your worms? I note that on wormswell.com, they sell a 10 Necator americanus hookworms for $130. Some other helminth providers are listed here.
Was there any special reason you chose Necator americanus hookworms for treating ME/CFS? According to Wikipedia, several different helminths are being used to treat disease:
A number of such organisms are currently being investigated for their use as treatment including: Trichuris suis ova, commonly known as pig whipworm eggs; Necator americanus, commonly known as hookworms; Trichuris trichiura ova, commonly referred to as human whipworm eggs; Hymenolepis diminuta, commonly known as rat tapeworm cysticerci.
Trichuris suis ova has been used in most cases to treat autoimmune disorders because it is thought to be non-pathogenic in humans and therefore has been rendered as safe. The use of Trichuris suis ova has been granted by the USA Food and Drug Administration as an investigational medicinal product (IMP). While in the UK, the hookworm Necator americanus has been granted an IMP license by the Medicines and Healthcare Regulatory Authority. This hookworm is likely to be relatively safe, but can cause some gastrointestinal complications.
According to this article, Trichuris trichiura (human whipworm) are 4 cm long and live in the colon (specifically, in the cecum and ascending colon); whereas Necator americanus (human hookworm) are 1 cm long and live in the small intestine.
From the autoimmunetherapies.com (AIT) website FAQ, I found this interesting:
Can I accidentally kill my helminths?
Yes. Not many things kill helminths, but it is possible. Nitrous oxide is known to kill hookworms. They are extremely sensitive to it, so much so that AIT recommends people abstain from eating canned whipped cream or any “food” sold in aerosol cans, because the propellant used is nitrous oxide.
Whipworms are not as sensitive as hookworms, but it is possible that nitrous oxide could have the same effect on them.
If either antibiotics or local anaesthetics are used while undergoing helminthic therapy, AIT has observed that efficacy can be reduced for up to eight weeks. AIT strongly advises clients to get in touch in these circumstances, because we have found that a small supplemental dose administered shortly after taking either of these drugs restores efficacy in as little as two weeks. AIT will supply a supplemental dose for just $150.00 USD.
There are lists on the internet warning people about things that kill helminths, such as turmeric, pumpkin seeds, and even carrots. We have had no experience of people losing their helminth population by consuming these things. AIT is of the opinion that any unprocessed food found in any diet will not harm your helminths. It is important to remember that neither hookworms nor whipworms feed on your gut contents; they feed on you.
The things that you should be wary of are highly concentrated foods or tinctures that are not found in nature. These include things such as essential oils, oregano oil, and mixed Chinese herbs used as infusions, because we have no way of knowing what they contain, and they could contain something with antihelminthic properties.
If something specifically states that it has antihelminthic or antiparasitic properties, stay away from it throughout your helminth therapy.
What happens if I accidentally kill my helminths?
If your helminths are killed accidentally you will see a rapid return of disease symptoms.
If you do want to purposely get rid of your helminths, this is very easy:
Are hookworms and whipworms easy to eliminate?
Yes. To eliminate hookworms, you can take a single dose of the anti-helminthic drug called Albendazole, obtained through prescription from a doctor. That is all that’s required.
Whipworms or hookworms, or both, can be eliminated with a 3-day course of a similar drug called Mebendazole. These drugs are available over the counter in some countries; in others, it is a prescription medicine available only through your doctor.
There have been a few threads on this forum about helminthic therapy, and ME/CFS patients who have tried it, but without positive results:
Starting helminthic therapy for CFS, log — in this thread, an ME/CFS patient tried Necator americanus helminthic therapy, but unfortunately got worse as a result.
Helminthic Therapy anyone? — in this thread, an ME/CFS patient tried Hymenolepis diminuta cysticercoid, but it worsened his bipolar, and he does not report any success for ME/CFS.
That is great news and absolutely fascinating. Is there a group forum for those on helminthic therapy?
I would love to hear what the lab rats have to say. One wonders about what to expect when introducing new "pets" into the home and what problems they might cause.
Did you also take prebiotics and probiotics to create a healthier gut microbiome?
That's quite some improvement! Congratulations! Sounds like you've gone from severe ME/CFS to mild ME/CFS as a result of your helminth treatment. Does that seem about right? So that's a two level improvement on the scale of mild, moderate and severe.
Yours is the first ME/CFS story I have come across where there was improvement from helminthic therapy, and in your case, a very major improvement. Would you know any other ME/CFS patients who have improved through helminthic therapy?
I'd say that scale-wise, you've hit it on the head. Definitely severe previously, now mild and getting milder. It's been two months since I wrote that page and I now no longer crash out often in the afternoons. I tend to slow down, but don't usually crash completely at the nine month mark. People in the helminth community are seeing improvements increase for 2-3 years before plateauing, so I'm hopeful I'll be back pretty much to normal (whatever that is) before I plateau.
Yes, there are several people I know of who have reported ME/CFS improvements. The therapy has been primarily centred around Crohn's and ulcerative colitis for a long while, but the last few years have seen people trying it for a number of other primarily autoimmune conditions. You can get a look at 500+ reports (successful and not) organized by symptoms and conditions at http://helminthictherapywiki.org/wiki/index.php/Helminthic_therapy_personal_stories
Is your ME/CFS a fairly typical case (do you satisfy the CCC definition of ME/CFS for example)? And can I ask, did your ME/CFS start with a viral infection episode, as is often the case, or was there some other triggering factor? Have you been tested for chronic infections, and if so, do you have any active viral infections?
I tick all the boxes in the CCC definition with ease. I remember struggling with energy from as far back as the age of 14, went to various doctors about it over the years, but it didn't hit in earnest until the episode I mentioned in the article. No one ever tested for chronic and or active viral infections. Like I said in the article, all any of the docs wanted to do was fiddle with migraine meds, no matter how I pleaded.
Is it possible that rather than ME/CFS, you could have another ME/CFS-like disease such as celiac disease? Celiac is known to respond to helminthic therapy, but I have not seen any research indicating that ME/CFS responds to this treatment. So that's why I am asking if you feel sure you have ME/CFS, because this is the first account I have seen of ME/CFS amelioration through helminthic therapy.
If we know with reasonable certainty that you do have ME/CFS, then your great success with helminthic therapy may open the doors to other ME/CFS patients wanting to try helminth treatment.
Given that there is no gold standard lab test for CFS/ME, anything is possible, but I fit that definition better than anything else I've found. I did have a blood test for coeliac at one point which came back negative. I do poorly with wheat, but I also do very poorly with nightshades, neither of these things being unusual for someone with autoimmune problems.
May I ask the cost of your worms? I note that on wormswell.com, they sell a 10 Necator americanus hookworms for $130. Some other helminth providers are listed here.
Was there any special reason you chose Necator americanus hookworms for treating ME/CFS? According to Wikipedia, several different helminths are being used to treat disease:
I got mine from Wormswell back when he had a different price schedule. I chose Necator americanus for a couple of reasons, one, it seems to be the best one to use for CFS/ME while other helminths are better for other conditions, TSO for instance, seems to be the go to helminth for autism cases and, two, it was BY FAR the least expensive, which is always an issue. These days I incubate my own, so I no longer have to order off for them.
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.
That is great news and absolutely fascinating. Is there a group forum for those on helminthic therapy?
I would love to hear what the lab rats have to say. One wonders about what to expect when introducing new "pets" into the home and what problems they might cause.
Did you also take prebiotics and probiotics to create a healthier gut microbiome?
There is an active forum for Helminth Support on Facebook where all such things are discussed in detail at https://www.facebook.com/groups/htsupport/ There will also be more on what to expect, etc on Colony of Me as I get more info on the site.
I've been eating a diet high in prebiotics and probiotics for several years now. I've tried supplements for those as well, including Prescript Assist, but never saw any noticeable improvement over my nutrient dense, vegetable heavy Wahls-style AIP diet with home fermented probiotic food and drinks.
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.
Very interesting to read someone with CFS/ME actually has improved on this. I looked into testing this treatment a year or two ago, but I guess my main concern is with the potential negative reaction and side effects from this treatment. CFS/ME patients are quite sensitive to any immune treatments compared to the average person. For example, my body reacts to certain probiotics like I had ingested some poison, my immune system goes crazy and it takes many days before I get back to baseline. If I could minimize the risks with getting an adverse reaction, it would be something to trial for sure.
Thanks for answers my questions so clearly, @Gyre.
You didn't mention though whether your ME/CFS onset was virally-linked, or whether you have been tested for chronic active viral infections. The reason I am interested is because helminthic therapy is known to reduce the Th1 (antiviral and intracellular infections) mode of the immune response, and increase the Th2 (antibacterial) mode. This is detailed in the Wikipedia article.
So possibly ME/CFS patients who have chronic active viral infections may not fare so well on helminthic therapy; perhaps helminthic therapy might work best for autoimmune ME/CFS without active viral infections.
Nevertheless, although my ME/CFS was virally triggered, and my blood tests show a chronic active infection with coxsackievirus B4, I am very tempted to try helminthic therapy, after reading your success story.
The cost seems reasonable ($130 for 10 Necator americanus helminths), and if it does not work, or if you start to get worse rather than better, you can very easily kill off all your helminths in just one day using the anti-parasitic drugs detailed above.
Very interesting to read someone with CFS/ME actually has improved on this. I looked into testing this treatment a year or two ago, but I guess my main concern is with the potential negative reaction and side effects from this treatment. CFS/ME patients are quite sensitive to any immune treatments compared to the average person. For example, my body reacts to certain probiotics like I had ingested some poison, my immune system goes crazy and it takes many days before I get back to baseline. If I could minimize the risks with getting an adverse reaction, it would be something to trial for sure.
People with Crohn's and ulcerative colitis generally start out with a dose of 25 NA and do well with that. For people with CFS/ME, fibro, multiple food intolerances/allergies or who are just plain sensitive to things generally are starting out with 5NA and seeing how it goes from there. I did 5 NA as my first dose and over the course of 9+ months have worked up to just 30, so much lower dosing than with the IBD folks. You can also minimize symptoms, should you need to and if you have a sympathetic doc, by having a course of prednisone.
Thanks for answers my questions so clearly, @Gyre.
You didn't mention though whether your ME/CFS onset was virally-linked, or whether you have been tested for chronic active viral infections. The reason I am interested is because helminthic therapy is known to reduce the Th1 (antiviral and intracellular infections) mode of the immune response, and increase the Th2 (antibacterial) mode. This is detailed in the Wikipedia article.
So possibly ME/CFS patients who have chronic active viral infections may not fare so well on helminthic therapy; perhaps helminthic therapy might work best for autoimmune ME/CFS without active viral infections.
Nevertheless, although my ME/CFS was virally triggered, and my blood tests show a chronic active infection with coxsackievirus B4, I am very tempted to try helminthic therapy, after reading your success story.
The cost seems reasonable ($130 for 10 Necator americanus helminths), and if it does not work, or if you start to get worse rather than better, you can very easily kill off all your helminths in just one day using the anti-parasitic drugs detailed above.
As I mentioned in the article, the various doctors I went to were not at all interested in trying to help with my chronic fatigue issues. The only blood work that was done was standard CBC (showed nothing interesting) and, when I absolutely demanded it a few years in, a thyroid panel. When the big symptoms hit, they told me I had a stroke, then later recanted on that Dx. Before that, I'd struggled with fatigue problems since the age of 14.
For me, HT was an obvious high reward/low risk thing to try. I had minimal symptoms (a rash each inoculation and the first time some increased wind and vague gastro uneasy) and a huge payoff. I've spent vastly more in supplements that I've tried and turned out out not to help than the money I spent on Helminthic Therapy, which turned my life around. If it had turned out not to work for me, I could have popped into the local chemist and gotten some deworming tablets over the counter. Easy.
The cost seems reasonable ($130 for 10 Necator americanus helminths), and if it does not work, or if you start to get worse rather than better, you can very easily kill off all your helminths in just one day using the anti-parasitic drugs detailed above.
Hip, also, if you didn't see my reply about dose size above, 5 NA has become the go to starting dose for CFS/ME and a few other conditions. The IBD crowd tend to go for 25 as a starting dose, but that seems to be well too high for the CFS/ME crowd. We also tend to need a much lower number as a maximum colony size.
From the Hookworm dosing page on the Wiki:
An initial dose of 25 is generally much better tolerated than 35, so this may be a better introduction to the therapy for most subjects, although even this number may be far too many for subjects with one of a small number of conditions, including the following:
fibromyalgia
Chronic Fatigue Syndrome (CFS/M.E.)
Multiple Chemical Sensitivity (MCS)
multiple food intolerance
narcolepsy
eosinophilic esophagitis
mast cell disorders
mitochondrial dysfunction
Anyone with one of these conditions needs to begin with exceedingly small doses of hookworms, and this is even more important for females, who appear to fare somewhat worse than males.
All those providers look pretty dodgy. No contact details and only accept payment in bitcoin. Probably just some private individuals working out of their basement. There's no way of knowing what you're ingesting.
All those providers look pretty dodgy. No contact details and only accept payment in bitcoin. Probably just some private individuals working out of their basement. There's no way of knowing what you're ingesting.
Some of the providers only accept Bitcoin, but by no means all of them.
I know Wormswell has specifically satisfied the import requirements for the New Zealand government and we take biosecurity very seriously down here. I've had no issues with Wormswell myself.
That really is an astounding improvement. I have been reading these forums more or less daily for 7 years, and it is rare to find stories of treatments providing even a one level improvement on the scale of mild, moderate and severe. Usually the effects of treatments don't even achieve a one level improvement. But you've gone from severe ME/CFS to mild ME/CFS, which is a two level improvement. That really is a huge gain.
People with Crohn's and ulcerative colitis generally start out with a dose of 25 NA and do well with that. For people with CFS/ME, fibro, multiple food intolerances/allergies or who are just plain sensitive to things generally are starting out with 5NA and seeing how it goes from there. I did 5 NA as my first dose and over the course of 9+ months have worked up to just 30, so much lower dosing than with the IBD folks.
How many doses of the Necator americanus hookworms have you taken so far, in the nine since you first started helminthic therapy? I had assumed that once happily living in your intestines, these helminths would increase in number anyway, so that you would not need any further doses of helminths.
Or are these helminths somewhat fragile, and prone to dying off, so that you have to regularly take top-up doses?
No one ever tested for chronic and or active viral infections. Like I said in the article, all any of the docs wanted to do was fiddle with migraine meds, no matter how I pleaded.
Same with me here in the UK. I had to pay myself for my viral blood tests. But like many ME/CFS patients, I also had a clear infectious episode preceding my ME/CFS: a bad herpangina-like viral sore throat that would not go away. In many cases, ME/CFS is preceded with an infectious episode like this, typically: a bad sore throat, a flu-like illness, or a gastrointestinal illness.
By the way, Gyre, did you ever test yourself for the usual dysautonomia conditions found in ME/CFS: postural orthostatic tachycardia syndrome (POTS), orthostatic hypotension (OH) and neurally mediated hypotension (NMH)?
POTS is very easy to diagnose at home: essentially if your heart rate increases by 27 points or more on stand up after lying down for 10 minutes, then you have POTS. OH diagnosis is similar, but slightly more complex, as it requires the use of a blood pressure cuff. Details about home diagnosis of these dysautonomia conditions can be found in my roadmap of chronic fatigue syndrome (ME/CFS) blood tests and treatments.
The interesting thing about POTS and OH is that they have both been linked to autoimmunity (and may well be autoimmune diseases). Thus if helminthic therapy is reducing autoimmune responses in the body, and thereby improving ME/CFS by that route, you might also expect any POTS and OH you have to improve at the same time.
The good thing about POTS and OH is that both can be easily diagnosed and measured objectively (unlike ME/CFS which is diagnosed subjectively by how you feel); this means that any improvements in POTS and OH arising from helminthic therapy can be measured objectively.
