Incredible improvements with Helminthic Therapy

Hip

Senior Member
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18,146
Just hitting week 12. The improvement at week 7 was, unfortunately, probably just a normal fluctuation in my ME. My health has since declined again. On balance I would say I am pretty much where I was at the start, if not a little worse. One of the reasons I am seeing no improvement might be that I started on such a low dose. Another might be that it is just too early to tell.

I certainly would not give up on it yet, because the in the above Hookworm Timeline post, it says that benefits only start to begin to appear at the 12 week point, and 20 weeks (5 months) is when the worms really get into the their stride in terms of providing benefits.
 

Cheesus

Senior Member
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1,292
Location
UK
Thanks @Hip. Yes, I saw that they only get into their stride at week 20. Still, a lot of the anecdotes I read talk about improvements much earlier, so I was always hopeful I would see changes early on too.

Nevertheless, there is ample opportunity for the worms to start doing their things - both from a time and dosing perspective - and I still remain cautiously optimistic that this could be what I need to get me out of my multi-year rut.

Are you still planning to start therapy?
 
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67
Location
New Zealand
Hi,

Any updates from @Gyre?

Still doing well. In fact, I've started a new business! We're now manufacturing cold brewed coffee and tea, so this requires hauling around large kegs of drinks, standing and bottling for hours at a go and working at Gourmet Food shows and having to be on my feet for entire work days. I still need recovery time after hard work, but I can get it done if I pace myself.

I added LDN about 8 months ago which gave me a small, but noticeable improvement in stamina and better sleep.

I did have a bit of a set back a few months ago when I let my inoculation schedule slip. Instead of adding a few new wormie friends at three months, I didn't add any for five months and the effect was NOT good. I'm still getting back to where I was, energy-wise, but that will teach me!
 

Hip

Senior Member
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18,146
I did have a bit of a set back a few months ago when I let my inoculation schedule slip. Instead of adding a few new wormie friends at three months, I didn't add any for five months and the effect was NOT good. I'm still getting back to where I was, energy-wise, but that will teach me!

That's very interesting, @Gyre, as it shows the importance of constantly maintaining a healthy colony of worms in the intestines in order to keep ME/CFS symptoms at bay.

Pleased to hear that you are still doing well, and still in near full remission from ME/CFS.
 
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67
Location
New Zealand
That's very interesting, @Gyre, as it shows the importance of constantly maintaining a healthy colony of worms in the intestines in order to keep ME/CFS symptoms at bay.
Some people can get away with only inoculating every 6 months, 1 year or even 3 years, but I'm obviously not one of them. A two to three month schedule with very small numbers (3-5 NA) is what seems to work best for me.
 

Hip

Senior Member
Messages
18,146
Some people can get away with only inoculating every 6 months, 1 year or even 3 years, but I'm obviously not one of them. A two to three month schedule with very small numbers (3-5 NA) is what seems to work best for me.

I wonder if you are eating anything that can kill worms? In the second half of this post, some foods that can kill helminths are listed.
 
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67
Location
New Zealand
I wonder if you are eating anything that can kill worms? In the second half of this post, some foods that can kill helminths are listed.

Highly unlikely, as I'd be seeing a much more sudden symptomatic change of course. I was extremely conservative the first 6 months on HT in avoiding anything that could conceivably cause a problem. When I added in various spices and other foods after 6 months of extreme caution, I saw no difference and that was over a year ago.

Most foods are fine at normal consumption levels. I avoid overdoing it on coconut products and some spices, but the only thing I actively avoid is peppermint oil. I LOVE peppermint oil and it is easy for me to go overboard with it, so it is safer to avoid completely.
 

Hip

Senior Member
Messages
18,146
Here is a possible explanation of how helminth therapy works for ME/CFS:


Resistin appears to be induced by helminth infection, and resistin can be pro-inflammatory in some contexts (this study says that helminth infection causes the release of resistin, which then promotes proinflammatory cytokines and impedes parasite clearance).

However, this study finds that resistin has anti-inflammatory effects by blocking the LPS-induced activation of TLR-4.

This then perhaps makes helminth therapy for ME/CFS similar to low-dose naltrexone (LDN) therapy, as LDN
blocks TLR-4 on microglia (LDN also increases levels of met-enkephalin and blocks the mu-opioid, delta-opioid and kappa-opioid receptors).
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
Philosophically and mechanistically this treatment is very interesting, as it's using another living organism to favorably augment the host. I imagine there are countless biological feedback loops going on that would be almost impossible to replicate with pharmaceuticals in their current incarnation.

It reminds me of other biological treatments that come from the byproducts of separate organisms such as fecal matter transplants (FMT), and intravenous immunoglobulins (IVIG). Helminth therapy of course goes one step beyond as it's utilizing an actual living organism housed within the body.
 
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52
Can you quantify that improvement in your ME/CFS symptoms in terms of your position on the ME/CFS scale of mild, moderate and severe? Where would you say you were on that scale before starting the helminth therapy, and where do you feel you are at present on this scale?

I would say I had mild CFS over the last 6-7 years and then veering into moderate over the last year. One of the reasons I started with the hookwarms was that I was getting pretty desperate. In the beginning of this year I had gone from managable fatigue to sleeping 8 hours a night and another 2 hours after lunch and still not being able to work.

From what I gather from Phoenix Rising there are different types of CFS. I think my fatigue has an auto immune component and this is something Helminthic Therapy seems to do well with. My other issues were IBS, Eosinophilic esophagitis, chronic rhinitis so there seemed to be a theme were I had an overactive immun esystem which left me with lots of inflammation

I started with 10 NA and I changed nothing else in terms of supplements for the first 16 weeks. It’s obviously difficult to judge these N=1 experiments, but I’m currently feeling better than in years and I credit the hookworms with that. I’m not at normal person status, but on most days I can get in 5-6 hours of desk work and I’ve been able to do yoga twice a week.

As general advice I would say start out slow. You see a lot of people in the main facebook group start out with 20NA. I would avoid that. I started out with 10NA and between weeks 5-8 I was very tired and had persistent stomach problems.

I did another 7NA a month back and will try to build up until I have 50 or so. I think that if you have similar symptoms it’s worth a try. It’s honestly less intrusive than a lot of other things we put ourselves through and there is a decent amunt of peer reviewed work on hookworms.
 
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41
Update- I Inoculated with 15 NA on April 2nd. On day 5 till now, I noticed my stomach aches have been nonexistent. (My digestion is not that great and I usually belch a tad here and there but haven't since) obviously, this is just the "bounce" phase and I expect things to be rocky in the next coming months. I can't really comment on energy since I'm already taking supplements to eliminate fatigue. I will try post updates every month.
 
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12
I'm still hosting, and right at two years with hookworms (about 8 months hosting a truly therapeutic dose). And 3 years, 9 months of hosting total. (I began hosting rat tapeworms.) So far, for me, it helps some. It can be a rocky road, with ups and downs. I'd still rather host than not. I'm hosting ~ 37 hookworms now, and will probably maintain that level as a stable colony. Like Gyre, I reinnoculate with 4-5 hookworms, every 3 months. I find that schedule preferable for a variety of reasons, not the least of them being the hookworm bite rashes. I believe in hosting multiple species, but haven't yet acted on that belief.
 
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