Mast Cell Disorders Forum - Helminthic therapy (worms) for mastocytosis???

bobkeenan

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Helminthic therapy (worms) for mastocytosis???
12/12/12 at 04:56:33

I was cruising around the web today came across this study where they are treating autoimmune patients with helminthic therapy. They introduce parasitic worms to the patients system. The type of worms live naturally in pigs but humans are not an ideal host. So thier lifespan is short and they do not develop into intestinal worms. The theory is that our society has become so anti-bacterial that our immune system is going after things that it should not go after. So did a quick search on masto and this therapy. I came up with several studies that conjecture that this could help masto patients as well but no actual treatment results. Anyone else heard of this?

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bobkeenan

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Re: Helminthic therapy (worms) for mastocytosis???
Reply #1 - 12/12/12 at 05:10:23

I did not finish the theory part... So the immune system will then go after the worms instead of all the non harmful triggers that it was going after. I guess studies showed that patients with worms had less or no autoimmune problems. Of course if the worms trigger an immune response then wouldn't it be a trigger?

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DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: Helminthic therapy (worms) for mastocytosis??? Reply #2 - 12/12/12 at 08:28:18 Ummm, I can't get past the worm part. Somehow, I just have to think that this is highly unadvisable....It gives me the creeps just thinking about it!
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MarciaB

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Re: Helminthic therapy (worms) for mastocytosis???
Reply #3 - 12/13/12 at 06:06:37

I'm not sure if this will help but I met someone who tried this. I don't know if she had masto and she's deceased now. I was told that it helped her but she was still severely disabled, unable to speak clearly or walk when I met her. Her mind seemed sharp but her words were all garbled.

I only mentioned this because sometimes medical studies make it sound like their treatment can cure anything. And unless we speak up, no one hears about when it didn't work.

Tc .. Marcia

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jbean

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Re: Helminthic therapy (worms) for mastocytosis???
Reply #4 - 12/13/12 at 08:49:24

Not advisable. One of the functions of mast cells is to irradiate parasitic infections.

It would be like throwing a match in a pile of gun powder. Toss some worms into your mast cell party, then you'd really see some major fireworks. Mast cells would probably blow off all over, neoplastic guys would proliferate to join the fun, and then you'd have a royal mess.

http://www.pnas.org/content/early/2012/04/04/1112268109

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zippy890 Tutor Offline I Love YaBB 2! Posts: 97	Re: Helminthic therapy (worms) for mastocytosis??? Reply #5 - 12/16/12 at 07:18:02 I've head of this before. It is an interesting idea. You'd just have to do the experiment with several people and see what happened.
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Joan

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Re: Helminthic therapy (worms) for mastocytosis???
Reply #6 - 12/16/12 at 12:59:06

Mast cell disorders are usually not auto-immune, but rather immune system dysfunction. There are a few people on this forum who have been diagnosed with the auto-immune type. This distinction might make all the difference, and I would not recommend helminth therapy for anyone with any type of mast cell disorder.

Strongyloides is a helminth, and believe me, it did nothing at all good for this mastocytosis patient! In fact, it took 3 years after it was treated for my GI tract to even begin to heal. Parasites can kick up the immune system, which is the opposite of what we need.

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Lisa

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Re: Helminthic therapy (worms) for mastocytosis???
Reply #7 - 12/16/12 at 13:43:30

I would also have to say that I think this is highly risky!!!! Mast Cell disorders, whether they include an autoimmune element or not, are a clonal defect of the mast cell itself. Jill's right on the mark cause the MCs job is to defend the body from "invaders" and protect the body by releasing it's mediators. By introducing them you are doing the very same as introducing a virus - it will kick up activity, not calm it down. The defective MCs are going to overreact and throw a party because they are hyperreactive in nature.

I also can't help but question this as a treatment for masto patients. I'm sure that if the different immunologists out there - Dr. Castells, Dr. Schwartz, Dr. Akin and Dr. Metcalfe felt that this was a valid treatment....they'd have tried it by now...AND SAID SO!!! The fact that there are no articles on this, makes me question it's use for masto.

I can see, however, why this would be beneficial in OTHER treatments where there is a need to stirr up the mast cells in order to help them function in a more appropriate way to take attention off of attacking the body in order to give it a REAL need to attack something. See the difference? In many autoimmune diseases the body is attacking itself mistaking the body as an enemy. By introducing the worms, it introduces a REAL ENEMY and thus "reteaches" the body as to what is a real enemy and a false enemy.

So, again, by doing this with a masto patient you are stirrring up what is already a hyperactive situation!! Shocked

BAD IDEA!!!!

Lisa

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zippy890

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Re: Helminthic therapy (worms) for mastocytosis???
Reply #8 - 02/25/14 at 08:13:38

BTTT.

I just ran across this again myself. If I am not mistaken, the intestinal worms modulate a dysfunctional immune response by releasing bio-active peptides (or the bioactive peptides are associated with the eggs they release ?). So, you get the worms; your body tries to irritate the worms to get them to leave, the worms release immune modulating (maybe even immune suppressive in some respects ?) peptides; the body calms down and declares a cease fire. That was my understanding. It's the immuno-active peptides from the worms (I believe), not just that the body is "diverting" its attentions.

Perhaps not helpful in systemic mastocytosis, but in MCAS... who knows ?

I'm not prepared to dismiss this yet. But caution is due !
Todd in Tenn.

P.S. Supposedly, you can modulate the level of infection also, i.e. a therapeutic dose of worms is 50 worms (?). You don't have to take 50 worms. I saw a report where people started low and slow with 2 worms, then ramped up as they felt comfortable. The worms don't multiply, so if you take two worms, you have two worms. And they are supposed to be readily eliminated with short courses of anti-parasite medications.

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zippy890

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Re: Helminthic therapy (worms) for mastocytosis???
Reply #9 - 02/25/14 at 13:16:26

Theoretically speaking, helminths have been shown to significantly raise IgE levels. But, I believe it is a non-specific form of IgE.

Here is a quote excerpted from the Yahoo Helminthic Therapy Forum:
The fact is that the polyclonal increase in IgE probably stops the allergic response by flooding out the mast receptors with "different" IgE molecules, stopping activation as I believe you require two identical IgE molecules to attach for activation.

Further, here is a abstract from PubMed showing increased numbers of mast cells in IBS, among other things. No surprise there. But, IBS is one of the conditions that typically gets a good response rate to Helminthic Therapy.
http://www.ncbi.nlm.nih.gov/pubmed/22053295

So, I'm just reporting what I'm seeing. FYI,
Todd in Tenn.

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zippy890

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Re: Helminthic therapy (worms) for mastocytosis???
Reply #10 - 02/25/14 at 15:04:28

http://discovermagazine.com/1993/sep/ofparasitesandpo264/

But when it comes to moderating the reaction to parasites, Ottesen thinks he knows
exactly what's going on. Indeed, he's devoted many lab hours over the past decade to
piecing the process together. It turns out, he explains, that there's an IgG antibody that
competes with IgE. The G antibody grabs onto the worm protein before it encounters the E
antibody fixed on the mast cells, preventing it from triggering the inflammatory response.

This blocking antibody, called IgG4, is the rarest of the IgG family. Normally most of the
IgG antibodies we make are those garden- variety killers of viruses and microbes, officially
known as IgG1; IgG4 accounts for only 1 to 2 percent of the total. But intriguingly, in
people with parasites, the blocking antibody jumps to 10 percent of the total, a fivefold to
tenfold increase. The parasitized people we've studied have enormous G4 responses, says
Ottesen. So even though they churn out plenty of IgE antibodies to attack the parasites'
proteins, many attacking antibodies are prevented from reaching their targets by blocking
antibodies. The blockade results in a subdued inflammatory reaction that makes it
possible for human and worm to live together. It's the other side of the coin--the control
side, he concludes. Even if you have a strong IgE response, if you know how to make a lot
of G4 you can control the reaction.

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DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: Helminthic therapy (worms) for mastocytosis??? Reply #11 - 03/06/14 at 05:50:37 I need to state: The Mast Cell Disorders Forum does not condone or suggest this type of therapy for any mast cell disease. I will not erase this topic from the forum, but I am locking it down, as I can't have forum discussions on things that could be very dangerous. Deborah Forum Owner
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