Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Moderate success with hookworms/helminthic therapy after 2.5 yrs

Discussion in 'Alternative Therapies' started by 1luke2, Dec 8, 2017.

  1. 1luke2

    1luke2

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    Hey all,

    I've had CFS/FM for 15 years. I'm 36 y/o male, tried everything, and finally have a slightly positive story to share. It's not an incredible story as per (http://forums.phoenixrising.me/inde...e-improvements-with-helminthic-therapy.48955/) but it's sustained, meaningful, and (hopefully) stable improvement after a 2.5 year journey with hookworms.

    Summary: I've found a small amount of hookworms significantly reduces inflammation across the board which has allowed increased (albeit still small) amounts of activity, and a large reduction in brain fog/general malaise. So nice to have a bit less pain and a brain again.

    Diagnosis: I've been diagnosed as a 'classic case' of CFS/FM by a respected rheumatologist (severe PEM, chronic muscle pain, borderline POTS, autonomic disturbances, brain fog, fatigue etc leaving me 85% housebound and of that 85% bed bound). That said, muscle pain was my #1 symptom, and while it wasn't the sensory, 'true' FM type of pain, it was muscle pain that would occur after any exertion and leave my legs particularly very sore. So I've tended to identify more with the FM than CFS side of things, for whatever that's worth. I've ruled out just about every other potential diagnosis.

    Story: After hearing about & researching hookworms I decided to give them a go. You can read about the general theory in the media, e.g.:
    http://www.nytimes.com/2008/07/01/health/01iht-01prof.14122951.html
    https://www.theguardian.com/lifeandstyle/2010/may/23/parasitic-hookworm-jasper-lawrence-tim-adams

    Some providers charge $thousands though, which was prohibitive for me. However after I discovered Wormswell.com which can do them for a reasonable price & the Helminthic Therapy Support Group (https://www.facebook.com/groups/htsupport/) which has lots of resources I was prepared to try it, and so my journey began...

    Note that I started by following the standard protocol and found this was not ideal for CFS patients, so be careful! The standard protocol is something like 25 worms to start, then extra batches of 25 until you get to a "therapeutic" level of 50, 75, or even 100. I'm currently using only 10 and found more than 25 problematic.

    I've experienced worsening of symptoms (as have others) at times, so also make sure you have anti-helmithic drugs on hand if you try this. (E.g. albendazole - you only need 1-2 doses to kill them off.) And please be aware of the risks, which are real and should be taken seriously.

    Here's the full story:

    March 2015 - Started with a dose of 5 hookworms, tolerated them fine, maybe even had a small bounce (a brief, temporary period of improvement that some experience). I wrote to the provider at the time "I had ~36 hours of lung irritation [you'll find out why if you read up on them :)] over days 3-4, and then ~10 days of mild abdominal discomfort and additional fatigue (i.e. feeling quite wiped out at times), and some flu-like inflammation, but that was about it."

    The provider wisely suggested I wait 8 weeks to mature befor adding more.

    Late June 2015 - Added 20 more. However, this resulted in 10+ weeks of considerable on-and-off abdominal pain which was, shall we say, not at all pleasant. I endured it (with very mixed feelings -- was very close to ending it several times) but still felt below par for a couple of months after that, and then hit the crazy Christmas season. However...

    Early 2016 - By early 2016 I was noticing I was getting more work done. Normally I can do 2-3 hours of very low-intensity computer work over a day, which has been consistent for more than a decade, creating a very stable baseline. But over a period of a couple of months I noticed I was averaging 3-4 hours per day, and was generally feeling more alert and generally 'with it'. That was a promising, albeit not revolutionary improvement, so I decided to up my dose to see if there would be greater, more systemic improvement.

    Mid 2016 - I took another dose of 12, then three months later another 12 around July. While I tolerated the split doses better than the 2015 dose of 20, adding worms knocked me back a bit, and I felt below par again and lost the mental alertness. Nevertheless, a couple of months after the last dose the mental alertness returned, but this time it felt almost overstimulating. It wasn’t a natural, relaxed alertness, but more like being switched “on” in an artificial way, like you've had too many coffees (or any coffee at all in my case).

    November 2016 - After trying everything I could to relax and try and accomodate the 'sped up' feeling I decided I'd had enough -- my body had been struggling, and I didn't have the extra gear I sometimes need to just get through my (very restricted) life. This made the worms at net-negative at this point, so I decided to terminate in November.

    What a waste of time, I thought. So much suffering for nothing.

    Early-mid 2017 - It took a while to recover from the overstimulation, but eventually things got back to normal. In fact, life became pretty hectic -- I moved interstate, I was getting a lot of work done, I survived an overseas holiday better than usual (with walking stick and electric scooter as per normal) and by July I even started going on short daily walks (~1000 steps), which is *very* unlike me, as I generally try and stay off my feet as much as humanly possible. Zero worms, but the alertness & increased activity had become a new normal, until...

    August 2017 - I got a cold/flu that had been doing the rounds, and got knocked around by it for a solid couple of weeks. After this I was right back at square one, CFS/FM-wise. I'd forgotten exactly what it was like. The muscle pain, the brain fog, the malaise... yuck. It all came back, just as it always had been, and it highlighted the extent to which I had actually improved.

    Pure speculation, but I wonder if the worms had put my immune system in a slightly healthier place so there was less inflammation, and I could do slightly more, even after the worms had gone. That is until my immune system was disturbed by a virus, and went into overdrive again (more inflammation etc). This is a really interesting phenomena that might shed a little light on what is going on in CFS/FM...? Who knows.

    I decided to restart the worms to see if going on a small amount would bring back the improvements...

    September 2017 to today -
    I got a new batch of 10 worms in mid September, and while I was knocked around a bit in October (people talk about "worm flu" when you get a new dose) soon enough the positive effects returned, and have stayed pretty consistent to date (Dec 9 as of writing). I've tried doing *tiny* amounts of exercise again, I can learn/use my brain more (still the main improvement), pain is down, occasional short walks (~500m, still with a stick) aren't a huge deal, and I generally feel more human.


    Conclusion: I'm still sick, I'm still largely bed/house bound, but it *is* quite nice to not have all that inflammation as an extra layer on top of that, despite everything I had to go through to get here. You know you're properly sick though when you can improve significantly, and still be pretty darn incapacitated though :/ From a "What *is* CFS?" point of view it's been pretty interesting to see I can remove inflammation and find it's just secondary to whatever the underlying issue is.

    So that's my story. Please keep in mind there are unknown risks associated with this therapy. I'm only assuming my provider is actually providing hookworm - I have no objective way of knowing. Buying parasites from an anonymous supplier off the internet is INHERENTLY RISKY AND POTENTIALLY STUPID. Just saying :) Worms can knock you around, and they itch like *hell* on application after a couple of doses. And who knows what happens long term to your gut/immune system/etc. People die from hookworm related disease (in very high loads) so again please be careful and educate yourself about the process and the risks before diving in.

    Feel free to ask questions and I'll do my best to answer them! :)
     
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  2. zippy890

    zippy890

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    Hey Luke,

    I too am hosting. Nice to see a fellow ME/CFS wormie. :) I started with rat tapeworms from Biome Restoration in 2014, and they helped some. Then I graduated to Necator Americanus hookworms in April of 2015. Like you I have had some ups and downs. I got my hookworms off the "Hookworm Underground" patient network. Everything you've said is spot on as far as I can see.

    I would just add that, I believe worms might be working by inducing IL-10 producing Bregs and Tregs. This would dovetail nicely with the improvements some have seen with the drug Rituximab. And also with the fact that EBV likes to hang out in the B cells, possibly stimulating them to mischief in people with CFS. But there's a lot of unknowns here, as you note.

    Worms have helped me some, but I'm not well. And they do cause me some grief occasionally (mostly stomach aches). But all things being equal, I like hosting. I'm "off the grid" so to speak, in that I can grow my own with no recourse to anyone one else. I like that measure of health independence, and no recurring costs. And, even if I couldn't tell the worms were helping me, I would still host, as I believe it is part of a healthy lifestyle. I've even infected other family members (with their full consent) at zero cost to any of us.

    The only thing I would add is caution about your colony size, and dosing. I started with ten, because I need enough males and females to breed, and I had travel far to get them off the patient network. If I were buying them (and I've never used Wormswell, so I can't comment on them), then I would start smaller. I'm currently just working to maintain my colony at a stable, healthy, and fecund level. Since hookworms probably become geriatric after about two years, I take 4 new worms every three months. This keeps me with a colony size of 24-32 working worms over a rolling period of two years. I've read that this is the estimated colony size of hookworms seen in wild, free living, humans. So, I'm using that as a baseline for my investigations into this lifestyle. Some people host much larger colonies. I've heard of people hosting up to 150, or more, hookworms. I would definitely discourage that for a CFS patient. For CFS, I think less is more. And I would space my doses out to 3-4 months for each dose. You must have patience for this therapy. You must.

    Thanks for posting and good luck,
    Zippy

    P.S. Some people believe it is more natural to host multiple species, like humans in the wild. I'm planning to begin hosting human adapted whipworms soon, in addition to my colony of human adapted hookworms.
     
    Last edited: Dec 14, 2017
    1luke2 and sb4 like this.
  3. Hip

    Hip Senior Member

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    Thanks for posting your story, @1luke2. Very interesting to see more ME/CFS patients trying helminth therapy.

    That sounds like you could have the ME/CFS "wired but tired" state, or a mild version of generalized anxiety disorder. Mild anxiety feels like a state of overstimulation, and you can actually be quite productive mentally with mild anxiety, but it does not feel that nice, since you cannot relax.

    If these anxiety / overstimulation symptoms return, you might try the supplements detailed on these threads:

    Completely eliminated my severe anxiety symptoms with three supplements!

    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state
     
  4. 1luke2

    1luke2

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    Zippy, thanks for sharing your experiences too, really interesting, especially that you've gone "off grid". Interesting points about ongoing dosing too -- I should have a think about that. How do you self inoculate, if you don't mind me asking? Is it the eggs-on-a-patch-on-your-arm approach?
     
  5. 1luke2

    1luke2

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    Hip, yeah 100% "wired but tired" for sure, even before CFS/FM (or more likely: in the run up to CFS). Going on a low salicylate/amine diet has helped, and relieved the stressed-to-depressed rollercoaster considerably (felt somewhat happy for the first time in a long time when I went on the diet). Didn't effect CFS/FM symptoms though. Lots of meds put me into a "wired" state very quickly too, which has been frustrating (e.g. florinef). I also tried low-dose, sublingual ketamine briefly which was a mildly interesting experiment in switching off the "wired" part of my brain a little bit :)

    Thanks for sharing your findings & resources too btw, have coming across them plenty of times over the years :) Really impressive result with the supplements for anti-anxiety, will give it another look. It's been years and years of feeling like "If I could just rest enough, then I'll feel better" (even though my sleep patterns are fine, albeit sleep itself is often unrefreshing). Hopefully one day we'll understand what's going on.
     
    Hip likes this.
  6. zippy890

    zippy890

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    Luke,

    There is a good Facebook Group called Helminthic Therapy. In the Files section there, you will find several methods of cultivating hookworms. I use "Sarah's Simple Method". It is not as clean as using glass petri dishes, but it is extremely easy and simple.

    In fact, I just started a new cultivation last night. It takes about ten days for them to hatch and mature to the L3 infective stage. So, I will be hoping to apply to myself and family on Christmas Day. You've heard the expression,
    "The gift that keeps on giving" ? And yes, you apply the mature L3 infective stage larvae to your skin with a patch/bandage. You need a good microscope for this, and also some other lab equipment. I probably spent $500 dollars getting good lab equipment. But it is durable goods. Your cost after that is virtually nothing.

    There is also a sister Facebook Group to Helminthic Therapy, called "Helminth Incubation". People there discuss just incubating helminthes, their techniques, etc.. Between those two Facebook Groups, there is enough information to tell you all about incubating and using hookworms, and other therapeutic species. Best regards.

    https://www.facebook.com/groups/678894952216125/

    https://www.facebook.com/groups/htsupport/
     
  7. 1luke2

    1luke2

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    That's really interesting Zippy, thanks for sharing, and all the best with the Christmas presents! :)
     

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