A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Incredible improvements with Helminthic Therapy

Discussion in 'Alternative Therapies' started by Gyre, Jan 26, 2017.

  1. Hip

    Hip Senior Member

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    @sb4, any updates on your helminth trial?

    @Cheesus, did you actually go ahead with a helminth trial, or are you still considering it?

    I want to try these helminths myself, but am currently still testing the Staphylococcus vaccine treatment for ME/CFS, and it may not be a good idea to test tow things at once.
     
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  2. Cheesus

    Cheesus Senior Member

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    @Hip

    No, not yet. I am about to do some pretty cool infectious disease testing, and I want to wait so a) I don't pick up the helminths on the test and b) I don't embark on this treatment direction if I can embark on a better-informed alternative.

    Helminths are the next step as soon as I have exhausted this avenue of exploration.
     
  3. sb4

    sb4 Senior Member

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    @Hip

    I seemed to go down hill for a few days than suspiciously on week 12 a bump back up.

    I'm on w14 however last 2 days feeling a little worse.

    I suspect the NA have brought some change however my current plan is to wait a couple more weeks, see where I'm at, then add 10 more. This should give me a more clear indication of how much it's helping. I will then be able to provide a meaningful update.
     
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  4. Hip

    Hip Senior Member

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    @sb4, have you seen this nice and clear Hookworm Timeline wiki article, linked to earlier by @Gyre, detailing what to expect, week by week, as you introduce hookworms (Necator americanus is a species of hookworm)?

    Apparently in weeks 3 to 10 after the introduction of the hookworms, you can feel a little worse, with fatigue and gastrointestinal symptoms. The article says that antihistamines or steroids can help. You may be still in this period of initially feeling a little worse, before you (hopefully) get better.

    Then from around week 12 (3 months) onwards, that's when the tide turns, and the worms start to work, and your symptoms start to ease (that is, if you are a responder to the worms).

    Around week 20 (5 months), that's when the worms really get into the their stride in terms of providing benefits, and so you should be feeling improved at this stage, if you are a responder to the worms.

    Week 45 (11 months) is when the worms reach equilibrium in the intestines, and any improvements that may result from the worms will usually have manifested by this time. Although in a few cases, improvements may not appear until week 60 (14 months).
     
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  5. sb4

    sb4 Senior Member

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    @Hip

    I have seen the timeline and it has followed my experience somewhat. Itchy skin, then cough, then ill/sinus/flu, wk8-12 gastro symptoms which have mostly gone. However it was like at 2-3week when I noticed a bump in symptoms which has mostly maintained ever since. This last bit is inconsistent with the timeline which makes me only 60-70% sure its the NA.
     
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  6. sb4

    sb4 Senior Member

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    Applied 10 more one week ago however am worried that they may not have took.

    The first 5 made the spot where I applied them itchy all day on the first day and then still itchy for days to come. This batch was itchy for the first 30 minutes then nothing. There are a couple of red marks left but thats it.

    First time I got a cough after a couple of days which lasted weeks. No sign of anything this time. I feel no different.

    I got a sore throat around a week or so last time but nothing yet.

    It was a hot day when I applied the patch although I kept the patch in the shade. Hoping they haven't evaporated or something...

    @Gyre any ideas on this?
     
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  7. Cheesus

    Cheesus Senior Member

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    @sb4 I found this on the wiki:

    http://helminthictherapywiki.org/wiki/index.php/Hookworm_timeline
     
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  8. Cheesus

    Cheesus Senior Member

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    Any updates on your last innoculation, @sb4? My helminths arrive tomorrow.

    How are you doing with you staph vaccine trial, @Hip? Are you thinking of moving onto helminths yet?
     
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  9. sb4

    sb4 Senior Member

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    I have definitely had increased motility which is good for my gastroparesis however I am unsure if it's just my body trying to expel the helminths/ or something similair and not it actually fixing it. I will know in a couple of months when the gastric symptoms settle down, if my paresis returns, then it won't have helped in this area, if it stays away, then it will have.

    I have had the sustained boost since starting my first one more or less consistently throughout, but still cannot 100% pin it on this as I'm still taking TUDCA.

    I will be very interested to see how you respond so I can compare...
     
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  10. Henrik

    Henrik

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    Very interesting thread Gyre. I've been reading what research I could find on Pubmed as well as all the anecdotal stories and there seems to be fairly low downside and lots of potential upside. I inoculated with 10 Necator Americanus on July 10th so hopefully I can replicate your success. I guess we have to wait at least another three month to see results, but I will try to update this thread now and then!
     
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  11. kyzcreig

    kyzcreig Senior Member

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    After reading this thread in February I bought 5 helminths (NA) and evaluated for 14 weeks. Symptoms got worse, I saw no benefit after 14 weeks so I killed them with anthelmintic drugs. I was also impatient to try other therapies as this one had only made me worse. The days after I killed the helminths I did much better.

    After helminth therapy I tried ShK-186. It gave me a tingling sensation across my body and did not improve symptoms.

    My primary symptoms are MCS and chronic fatigue. I see positive response from corticosteroids, Ozone IV, and nutritional IVs. I am currently 2 weeks into Rituximab therapy, response is usually 5-6 weeks in. I will post if I notice benefit.

    I am looking into IVIG and the MCAS drugs. Research shows CFS patients have mast cell irregularities and MC disorders are associated with low level environmental sensitivities.
     
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  12. kyzcreig

    kyzcreig Senior Member

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  13. Cheesus

    Cheesus Senior Member

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    This was a false start for me. I did finally start helminth therapy 7 weeks ago. I am currently seeing an upswing in my energy. I don't know if it is the start of sustainable improvements from the helminths yet, but things are looking positive for the time being. I will update again at the 12 week mark when I plan to inoculate with 5 more.
     
    Last edited: Oct 23, 2017
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  14. Henrik

    Henrik

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    I need to write a longer update, but I started Helminthic Therapy 14 weeks ago and since week 8 I've seen very large improvements in energy. Too early to say anything definite, but it's by far the biggest change Ihave had since I got sick five years ago.
     
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  15. Hip

    Hip Senior Member

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    Are you using the Necator americanus helminths discussed in this thread, or some other species of helminth?
     
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  16. Cheesus

    Cheesus Senior Member

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    And what was your starting dose, @Henrik?
     
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  17. Henrik

    Henrik

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    I started with 10 Necator Americanus. Not that many side effects and I took prednisone for those. Just be aware that you need to wait at least 8-10 weeks before you see any effects. It definitively takes some time before the worms are mature enough to start working.
     
  18. Cheesus

    Cheesus Senior Member

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    I only took 5, so it might require another dose or perhaps more to fully get up to speed.

    Let us know how you get on.
     
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  19. Hip

    Hip Senior Member

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    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?

    Hopefully in the coming months, if your health level continues to improve, you might move even further up this scale. The original poster on this thread, @Gyre, started out with severe ME/CFS, but moved up two levels on this scale to just mild ME/CFS after helminth therapy, which is a huge improvement (even moving up one level on this scale is a major improvement).


    I am planning to try helminth therapy myself soon.
     
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  20. Cheesus

    Cheesus Senior Member

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    Just hitting week 12(ish). 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 should temper this with a note of caution, however. Whilst I have not seen any improvement, I have seen some changes in my symptoms (different symptoms or a resurgence of symptoms I haven't had for a while). This in itself is intriguing as my condition has been incredibly stubborn for years now, with no change in anything at all beyond the small fluctuations mentioned above. So change is good. If it can change, it can get better (I hope).

    I have re-dosed with another 5 NA. Itching was worse this time. The rash isn't too bad, but unlike last time i cannot see the individual entry points of each worm - perhaps they were clustered too close together.

    I will report again either in 6 weeks or if something happens. In another 12 weeks I plan to up the ante by dosing with 10 hookworms if I don't get many side effects from the 5 I have just inoculated with.
     
    Last edited: Nov 25, 2017
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