Convinced this is the way to go.... Helminths

[alwaysimproving]

After doing a fair amount of searching around I've become fairly confident that helminthic therapy is the best way to go.

Thoughts?

[eye2dry]

 hello.

This was discussed months ago here. I forget the forum users name but they had
infected themselves (mail order hook worm) purposely because they believed in
this theory. I have not seen an update....so, I am not sure how it went for this person.

Maybe someone here can remember the persons name and then you can get in
contact with them. I myself do not believe it.

shelly

[Sharon]

It was WhatYouSjo and he claims it has helped him.

[jazzlover]

Because I have Mast Cell Activation Disorder, there is no way I would do that. I  read that it can activate mast cells. Believe me, you don't want them activated.

[Sharon]

I second what Jazz is saying about not wanting to activate those mast cells!

[Carolina]

Article from The New York Times:

http://www.nytimes.com/2016/06/19/magazine/the-parasite-underground.html

"Citizen scientists are pushing this forward," says Donahue, who acts more like an evangelist than an entrepreneur. He seems to want to share the miracle he's found, to spread the word and help others. Biome Restoration has no robust safety data nor any evidence that rat tapeworms help with anything. And parasites that find themselves in unfamiliar hosts can, in theory, cause significant disease and, in rare cases, even death. (In March, the F.D.A. extended an import alert, which already applies to hookworm and whipworm, to tapeworm.) But the company, which seeks to make a more affordable helminth available to more people, is trying something few others have: It is engaging with regulatory authorities to legally sell its product in Britain. The underground is pushing its way aboveground.

Regards,  Elaine

[Navigator]

I have not done extensive research but have read a few articles here and there. That being said trying anything..be it helminths or new drugs or whatever is a weighing of risks and rewards. 

Our bodies are in effect a super organism, much more complicated than we think.  I have read some studies that show that WHEN a person is exposed to an infectious agent/parasite affects how it moderates the immune system...in other words there are windows in our lives (most in infancy and childhood) when if we are infected with XYZ our immune system is impacted.  This is still an evolving science.

So I think a vision of cure (if that is the goal) may be out of reach. A moderation of symptoms might happen...I don?t know, but at what risk?

I would look for a study that maybe you can join first before thinking of going it alone and I would only do this (if it was me) with my doctors knowledge.  If something goes wrong that is who will have to address the result.

[trc1962]

Sounds a little extreme and possibly dangerous not to mention downright gross....

[alwaysimproving]

Hmm... what would be the risks though? The only risks I can see with Necator Americanus is possibly wasted money and disappointment.

[WhatYouSjo]

<sigh>

This type of response is one of the reasons that I no longer frequent these forums like I did in the past. While I do not wish to engage in a large debate, I will say that I do use helminthic therapy and have found it to be quite helpful. I have also spoken to other SS patients who have seen their symptoms improve on HT. I would note that two medications that this forum is generally supportive of, Plaquenil and Rituxan, have both repeatedly failed clinical trials and have serious side effects that include permanent blindness and a deadly, brain-eating virus (PML). The side effects of HT, on the other hand, are fairly mild, and can be easily reversed by ending the treatment. No drugs have ever been approved to treat SS systematically, so we often must look into alternative treatments.

Alwaysimproving, I?ve already shared my experience with you directly, and I know that you have done your own research as well. As you?ve stated, the main risk is financial, and even then it is much cheaper than biologic drugs. The choice of treatment is ultimately up to you, and I hope whatever treatments you choose end up helping.

[jazzlover]

Mast Cell Activation Disorder is a huge risk to take. Maybe you should research that one.

Have you read this one?

http://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1003250

[alwaysimproving]

Whatyousjo it is understandable that people would be wary of this. Skepticism is good. I always appreciate your input though...

MCAD is inherited I believe, so unless I have it (never had the symptoms) I should be fine?

[WhatYouSjo]

As I said, I really don't want to get into a long debate, but since it has been implied that I am uninformed, I will respond this time. While helminths initially do increase mast cells as part of the immune reaction, they have also been found to inhibit mast cell activation in at least one study, and are being considered as a possible therapy for mast cell disorders. There is actually significant discussion in the HT community around mast cell disorders, and while the science is still uncertain, they may ultimately prove to be of a benefit. There are members of the community who have treated their mast cell disorders with HT, though results have been mixed and they are recommended to start at much smaller doses. This is similar to fibromyalgia, which has a mixed record with HT treatment, and thus fibromyalgia patients are started on smaller doses. These types of issues are normally discussed as part of the helminth acquisition process with at least some providers. However, as I stated, patients can end the treatment with a single anti-helminth pill.

Skepticism is fine, but I have seen outright hostility towards members of this forum who try to tell their story concerning alternative therapies. I personally have been attacked through PM and directly on these forums in the past for simply stating facts about my own experience. I am a member of other SS forums where members may be skeptical, but are still very supportive. It doesn't have to be one or the other.

[Carolina]

I've been here since 2010, when I came desperately seeking advice, suggestions, and support after I developed Profound Peripheral Neuropathy.  I have serious Immune Disorders.

In that time I've seen several 'conflicts of opinion' on the forum.   I think the reasons can be boiled down into a few points:

1.  The scientific method vs. personal experience. 

The scientific method requires objective testing of treatment modalities, using thousands if not hundreds of thousands of tests.  To be truly scientific the testing must factor in the placebo effect. 

Personal experience requires that a treatment work for one or more people.

2.  Both the scientific method and personal experience can be unreliable indicators for each of us.  We are individuals with serious Immune Disorders and we baffle the medical community, each other and ourselves!   

Often, we must rely upon trial and error.  I, personally, come down on the side of the scientific method.  I refer to the NIH, even when choosing supplements.  I must know that at least no known harm can come from my choices.  However, only trial and error shows me what works for me.

3.  We all wish to be tolerant and kind when members post about any treatment that offers hope.   However, all members are free to express their opinions here.  Disagreement is natural and normal.  We are grown ups and expect disagreement.

if a post is abusive, however, please refer it to the Forum coordinators.

Regards,  Elaine

[cccourt1942]

I know NOTHING about this topic.  I can tell you whenever it comes up, I experience the yuck factor.  I am an American and a Christian.  I believe everyone (on earth) has the right to believe (right or wrong) what they choose.  Therefore, if you want helminth therapy go for it.  If a physician or Chinese herbalist recommended it for me I would decline.

That being said, it's strange this came up again this week.  Last week an article (on the internet) I read a warning about "the" filarial worm.  I hope that 's the correct spelling.  What caught my full attention is something I didn't realize:  ALL hookworms are helminths. 

Just a comment.
Sjoldier c3