Helminthic therapy(treatment using hookworms)

Tell us what you are using to treat your MS-- and how you are doing.

Re: It's not so easy

Postby ScutFarkus » Sun Nov 21, 2010 10:02 am

Lyon wrote:
ScutFarkus wrote:Nothing to lose? Last time I looked into helminthic therapy, I was put off by the price and legal situation. I'm in the US, and as I recall it's $2500 or more to buy worms, plus the challenge and costs of traveling to a different country to actually receive the helminths. On top of that, it is an unproven and rather disgusting therapy. :)

:lol: I'm among the staunchest of proponents but I have to admit that you're right on every count. It's surprisingly expensive, gives the FDA the heebie jeebies and is pretty darned disgusting!

Still, while association doesn't imply causation, it's hard to ignore the seeming association at every turn between the progressive loss of evolutionary normal conditions as we industrialized nations "developed" and the increased incidence of inflammatory immune disease in those same locations and populations.


True, but there are also some theories about this that don't involve parasites. For example, improved diagnosis techniques, more indoor lifestyles (lack of sunshine), etc. The science is still far from settled on whether or not this trend is real, and if so, what's causing it.

In general, I think my view on therapies is that they need to be reasonably safe, plus at least two of the following: cheap, proven, and plausible. I'd say helminths have safe and plausible down, but so far are lacking on the other two. I'd probably try 10-15 worms myself if they were cheap.

A clinical trial good enough to get the FDA to back off in the US would do wonders, since there's no reason they ought to be expensive. Although they'd still present a heck of a challenge from a marketing perspective, given the whole "disgusting" thing. :) But I'm fine with that.

/Scut
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Re: It's not so easy

Postby Lyon » Sun Nov 21, 2010 11:54 am

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Last edited by Lyon on Fri Jun 24, 2011 7:04 pm, edited 1 time in total.
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Postby HelminthicTherapy » Sun Nov 21, 2010 12:02 pm

oh, man, that sucks!! That was a long post :-(
by any chance, anyone had it saved in their cache?

Lyon wrote:
HelminthicTherapy wrote:did my post just get deleted? what happened?
I think so. thisisms was down for hours last night and I had seen your post and responded and they're gone now.
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Postby Lyon » Sun Nov 21, 2010 9:41 pm

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Re: It's not so easy

Postby Egggirl » Sat Dec 18, 2010 10:39 pm

Lyon wrote: You might or not be aware that a friend at the University of Wisconsin/Madison is on the phase II using the T suis helminth against MS and although it's blinded there are good reasons to think that he's finding good results.....despite the myriad of reasons NOT to think that good results would be found using T suis.


I am new here and am starting my treatment with helminths in January. I am in the same trial. I just wanted to say I am so thankful to have stumbled across a forum that really does seems so open and unbiased and I am excited to find other MSers using the same therapy. Being diagnosed and then jumping into a clinical trial has been daunting to say the least. Just browsing on this forum has been a comfort. Apuman I can't wait for another update!!
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Postby dreddk » Mon Dec 20, 2010 7:19 pm

Eggirl Please keep us updated on your progress. Plenty of interested minds here!
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Postby Apuman » Sat Dec 25, 2010 7:22 pm

I'm excited for you too Egggirl! I hope the trial shows good results for you, I'll be interested in knowing as well. There's certainly lots of different opinions on this board, especially regarding a controversial treatment such as this, but it will all serve to make you better informed.

As far as my own progress, there's been no change since my last update, which is good news, of course :wink:

It's been about 6 months since my last minor attack now, and I can definetly say that I've thrown some stressful triggers onto the pile with all the traveling and working, so at least for now, it's withstanding the stress tests. 6 months is also on the longer end of the remission periods i've experienced, so that's giving me reason to be optomistic as well. It's good to have days where the letters "MS" don't even need to enter my mind.

I've also been picking up carpentry work again. Even during previous periods of remission, this particular stress factor seemed daunting to me, with the loss of coodination and strength, as well as the fear of triggering another attack. I was a little shakey to start with, but I think it was more a matter of not doing this type of work for so long. Now I feel pretty confident doing the moderatly heavy work.

Every time I think about the course of my disease since taking my dose, I grow more and more confident that they truely are an effective option.
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Postby Lyon » Sat Dec 25, 2010 9:31 pm

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Postby mrbarlow » Sun Dec 26, 2010 9:48 am

Thanks Apuman - great post and please keep us updated on your progress.

I am starting combined therapy from AIT in February. Cost is $4000 which effectively covers 5 years treatment. $800 a year - compare that to the cost of conventional treatments and think again.

Im currently in CIS territory following one acute boout of ON. However I suffer daily tingling particularly in hands and feet and anticpate another acute attack in thefuture. I have one very small WM lesion on the brain. As a result Neuro put me on Rebif.

Also high dosing Vitamin D 3-5000iu a day. Lots of oily fish, avocado and olive oil.
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Postby Lyon » Mon Jan 03, 2011 11:32 am

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Postby Egggirl » Mon Jan 03, 2011 4:33 pm

Apuman I am so pleased to hear you are doing well. Thank you so much for posting and keep us updated. I started my clinical trial today and am anxious for the next treatment in two weeks!!! I posted about it in the Drug pipeline since it is a phase II trial.
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concurrent treatment with helminths?

Postby roadaction13 » Sat Jan 15, 2011 12:37 pm

hi all - thanks so much for this fascinating and informative thread.

I have RRMS and am currently on tysabri (infusion #6 was yesterday)... but I want to get off in the next 6 months or so, since I have tested positive for the virus that causes PML and I don't want to risk getting it.

So I've been looking into helminthic therapy... I will shortly be setting up a call to talk to the guy in England that sells it but in the meantime...

I assume I can't be on tysabri when using it, but how long of a wash-out period do i need before i start it?

I'm also on low-dose naltrexone and low-dose testosterone - would I also have to stop those treatments?

thanks!

JD
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Postby mrbarlow » Sat Jan 15, 2011 11:56 pm

As far as I am aware you don't have to stop any treatments.

AIT will set up a phone call with Marc Dellerba, the companies clinical biochemist. He is ex NHS. He will go through any contraindications.

From what I recall the only thing to avoid is spray foam cream which has nirous oxide in it and can kill the worms. Like wise general anaesthetic will kill the worms.
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Re: concurrent treatment with helminths?

Postby Apuman » Sun Jan 16, 2011 10:51 am

roadaction13 wrote:I assume I can't be on tysabri when using it, but how long of a wash-out period do i need before i start it?

I'm also on low-dose naltrexone and low-dose testosterone - would I also have to stop those treatments?


Hi roadaction,

I'm glad to see that you're open to considering helminths. The important thing to keep in mind is that this treatment is still very experimental, and by going on it you assume all of the risks. Marc Dellerba will go over all of your current medications and the results of your blood test, and will inform you of any foreseeable complications, but ultimately, you're taking the risk into your own hands.

That said, there really is very little reason to think that complications should arise, as far as we know at this point.
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Postby gibbledygook » Fri Feb 11, 2011 11:46 am

I expect this has already been posted somewhere on a helminth forum but just in case...
J Neuroimmunol. 2011 Jan 28. [Epub ahead of print]

The impact of parasite infections on the course of multiple sclerosis.
Correale J, Farez MF.

Abstract
Previously, we demonstrated that helminth-infected MS patients showed significantly lower number of relapses, reduced disability scores, and lower MRI activity compared to uninfected MS subjects. In the current study, 12 patients with diagnosis of relapsing remitting MS presenting parasite infections were prospectively followed during 90months; due to exacerbation of helminth-infection symptoms after 63months of follow-up, 4 patients received anti-parasite treatment. Helminth-infection control was associated with significant increase in clinical and radiological MS activities. Moreover, these patients showed significant increase in the number of IFN-γ and IL-12 producing cells, and a fall in the number of TGF-β and IL-10 secreting cells, as well as CD4+CD25+FoxP3+ Treg cells evident 3months after anti-helminth treatment began. These new observations on parasite infections associated to MS indicate that parasite regulation of host immunity can alter the course of MS.

Copyright © 2011 Elsevier B.V. All rights reserved.
PMID: 21277637 [PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/21277637
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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