Helminth secretions in a pill or injection.
They're claiming it's the answer for all AI conditions.
What do you all think about this new invention?
Click on the link to see a video of the interview with the creator of the treatment:
https://worldisraelnews.com/watch-israeli-autoimmune-disease-treatment-with-parasitic-worms-has-marvelous-results/?utm_source=MadMimi&utm_medium=email&utm_content=US+Furious+Over+UN+%27Israel+Apartheid%27+Report%3B+Trump+to+Maintain+Aid+to+Israel+to+Ensure+Military+Edge&utm_campaign=20170316_m138177347_US+Furious+Over+UN+%27Israel+Apartheid%27+Report%3B+Trump+to+Maintain+Aid+to+Israel+to+Ensure+Military+Edge&utm_term=watch_btn_dark_png
That's great - all the benefit of the parasite, but without the parasite.
Exactly!
Sign me up!!! I might even make a trip to Israel soon and see if I can get in on it. :D
Interesting! I would try it. I'd like to hear more about it
Kathy
this would be really great but there are no news about this, articles, official sites, medical magazines
You just need to know where to look.
Here are a few sources:
https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-015-0306-7
Versini M, Bizzaro G, Shoenfeld Y. Helminths and autoimmunity: the good, the bad and the ugly. Israel Medical Association Journal. 2015;14(4):249-250. http://www.ima.org.il/imaj/viewarticle.aspx?year=2015&month=04&page=249.
http://www.rheumatologynetwork.com/rheumatoid-arthritis/helminth-therapy-ra
https://www.elsevier.com/books/infection-and-autoimmunity/shoenfeld/978-0-444-63269-2
http://ndt-educational.org/shoenfeld_slide_2014.html
I had a friend who had MS who tried this. This was several years ago and he had to have this complicated delivery process to get it through customs. Unfortunately he was too far gone for it to help him much but when he heard I had Lupus/Sjogrens he recommended I try it.
I would be willing to use the worms myself, I guess I'm not very squeamish about such things. Its quite easy to purge them if that's what you want to do. Of course if they synthesized the component that gives the benefits without worms involved so much the better, though I wonder how long before it would be approved for use. Anyone know?
Searching around I came across this article:
http://www.stuff.co.nz/life-style/well-good/teach-me/78818294/ive-got-parasitic-worms-living-inside-me-and-its-great (http://www.stuff.co.nz/life-style/well-good/teach-me/78818294/ive-got-parasitic-worms-living-inside-me-and-its-great)
This one got my attention because her most debilitation symptom is fatigue which is mine as well.
Well, I will tell you what. I am ready to jump on a plane and head to wherever I can legally obtain this stuff. ;)
I'd be more likely to try this than the actual worms . . . I think I'd get very nervous about the idea of potentially passing my "pets" onto others . . .
As someone who is using and has benefited significantly from helminthic therapy, I have been following this research with interest myself. Traditional HT has been found effective across a variety of AI conditions including SS, so I wouldn't be surprised if the TPCera treatment has a wide reach. There is a lot of promise, but also several questions.
It's hard to know how much of the beneficial effects of HT come from their secretions vs. the actual presence of the worms themselves in the digestive track. It may be that the TPCera treatment will not be as effective as traditional HT. It is also possible that the new treatment will be more effective due to synthesizing the best dose and combination of secretions. With no publicly available data, we won't know until more studies come out.
The treatment will have to go through clinical trials, which can easily take a decade. The initial trials will likely focus on MS, RA, and other more publicly recognizable AI conditions., so those with primary SS will have to wait even longer. In addition, the patented treatment will likely be expensive without insurance coverage, particularly compared to traditional HT costing $500-$1000 each year, depending on provider.
In short, this is very promising research, but it is a long way from being proven or available for SS patients. I will continue using and recommending traditional helminthic therapy for the time being, though I will definitely keep an eye on TPCera.
As an aside, it is nearly impossible to pass therapeutic helminths to others, as modern sanitation and footwear prevent transmission.
Good to know that!
A question for WhatyouSjo - as I understand it, the helminths dampen down the immune response - so does this mean you are more vulnerable to infections and other health problems?
I have been reading about this for some time and am curious. Does anyone know how someone can tell if its a good thing or bad thing if they might already have some parasites without trying? So many people in integrative medicine test for this then do cleanses to get rid of them.....if you were to get implanted with them couldn't you accidentally cause a die off by eating wrong spices etc and feel sick? So many questions :) But interesting to explore no doubt.....too bad we are so far off from easy access and validation scientifically ....
Araminta, the exact mechanisms that helminths exhibit on our immune system is not fully understood. Studies have been mixed - some have found a higher degree of certain infections among helminth carriers, while others have found helminths to reduce certain infections. It is important to note that there are many helminths that infect humans, and only a very small number of them are used therapeutically. Much helminth research focuses on subtropical areas where people are often infected with many different (and often larger) helminth species.
That being said, there is disagreement as to how helminths affect our own immune response to foreign pathogens. Therapeutic helminths such as necator americanus are known to stimulate the growth and activity of T-regulatory cells, which help dampen the immune response. This could potentially reduce the immune response to foreign pathogens. They also stimulate the production of eosinophils: large immune cells meant to fight multicellular invaders. One view is that the helminths give our immune system something else to target rather than weakening the entire system. This is very different from biologic drugs and most DMARDs, which attack parts or all of the immune system and often leave patients more susceptible to infections.
On a personal level, I haven't found myself to be particularly more susceptible to infection since starting helminths, though SS itself has thrown my immune system for a bit of a loop.
Wendyoh, as I mentioned above, there are many different types of parasites, and only a few fairly benign ones like necator ameracanus are used therapeutically. There are certainly parasites which have an overall negative effect on our health, and many which are not well understood. Most providers of helminthic therapy would recommend only controlled doses of well-understood helminths like NA.
One of the things that my rheumatologist and I discussed on Monday is drugs and reactions to them. I'm going to paraphrase and say somethings work for some people and some work for others.
I have gastric issues and have to take Nexium daily to control GERD, even my PCP has said her SJS patients have not been able to quite taking it. So, would I let someone worm me, I'm not so sure. I tried probiotics years ago when I first was ill and they made my face break out horribly, even the residents in the care facility where I worked commented on it.
I might share this with my gastro doc to see what he or his staff have to say about it.
Thanks for your reply, WhatYouSjo. It certainly sounds as if this type of treatment has potential to help SS sufferers.
I didn't click the links yet, but I'm assuming this would be something you'd need to take regularly.
I'm very tempted to look into this hookworm therapy...especially with the past week or two, feeling so awful after a month of feeling awesome.
thanks whatyousjo for the info that was helpful
I would be curious to hear from folks doing that treatment if they have to avoid spices and herbs that fight parasites to avoid feeling sick or messing with their treatment
Wendyoh, there is a list (http://helminthictherapywiki.org/wiki/index.php/Introduction_to_helminthic_therapy) of potentially problematic foods, drugs, and supplements. Most problem items are drugs, with most spices being fine at normal dietary quantities.
A patient named John Scott manages a Facebook group for helminthic therapy (https://www.facebook.com/groups/htsupport/). He also maintains a lot of useful documentation, such as the care manual with the list of items that can interfere with HT. If you are interested and have not yet done so, I recommend reading the Helminthic Therapy Wiki (http://helminthictherapywiki.org/wiki/index.php/Helminthic_Therapy_Wiki), particularly the Introduction to helminthic therapy (http://helminthictherapywiki.org/wiki/index.php/Introduction_to_helminthic_therapy) document. The site is provider-agnostic, but they do provide a short description of the currently operating HT providers.
hey thanks again, I think I did join some group at FB about the therapy Whatthesjo, but my brain isn't working too great this week, in middle of dealing with dry socket after tooth extraction so was going to delve deeper when brain a little better, I think I could handle wiki now tho ;)
whoa that is interesting, I followed one of the links and reading contraindicated things for one of the worms---promethazine and pumpkin seeds and the clove oil the oral surgeon just packed in my dry socket wouldn't be good either
interesting also moringa is anti-helminthic (sp?) I have been putting that in my smoothies, can't tell if I like it or not, using minute dose, but a friend of mine with psoriasis swears it cleared it up for him.....
I love reading about this kind of thing, how different chemicals interact and best ways to heal and how to do it with more "natural" methods
...I think I'm about to take the plunge and order some NA...
*breathes deep*
I remember quite a few years ago when a new medication appeared in Europe for the treatment of PBC. I forget the name of it, but I was all enthusiastic. I took the article promoting it to my doctor. He read it and said that he would not recommend trying any medication that had not been approved for at least 3 years. His reasoning was that the clinical trials treated too few patients to adequately check for side effects which may appear after thousands of people have been treated. In reading one of the articles on this therapy, I noted that a few people did have reactions. Also there is no information about long term affects.
When Ursodiol (the first drug approved for PBC) came out, we were assured that it was safe and no side effects. Over the years, though I know of no deaths, Urso, although Urso is generally safe, it has been found to have major side effects in some people.
When Methotrexate was first tried with PBC at least one patient died.
I hope this therapy works, but right now I am a little leery of the side effects and long term effects. I will wait and stay informed.
Katie1111
Well, I'm on day 9 of my NA inoculation. It's going to be a while before I find out if this works or not, but I'll be sure to come back with some updates.
Keep us updated Sabbra!
I'm waiting for the secretion injection I posted about to be properly researched.
I can't bring myself to infect myself with actual helminths.
The theory makes a lot of sense to me, and the science looks fairly sound...and after about 30 years of suffering, any glimmer of hope sounds like a godsend compared to "there is no cure". So maybe I might be acting out of desperation =)
I think my worms got lost somewhere, because here I am with a tickle and cough on day 9 and 10, when that was supposed to happen closer to day 4. Still breathless with anticipation for "the bounce".
My concern about the injection/pills is that, being something you would likely need to take on a regular basis, the cost could be quite high. Although if it could actually be approved by the FDA, that would be a huge bonus.
I started helminth therapy back in April and have had good success with it, in particular my energy level and cognition have been noticeably improved. It hasn't been a 'cure-all', it did nothing for my Raynaud's and hyperacusis, but I'm thrilled with the benefits I've had.
Quote from: SabbraCadabra on November 09, 2017, 07:16:45 AM
Well, I'm on day 9 of my NA inoculation. It's going to be a while before I find out if this works or not, but I'll be sure to come back with some updates.
Good luck Sabbra! It took me 2-3 months to notice improvements from my helminths. Seasonal allergies were the first thing to go, but my SS symptoms also improved steadily throughout the first year.
Yeah, I've read that it can take quite a while...it's not like I have anything else going on in the mean time =)
I've had these issues since I was a little kid, so I'm certainly not expecting any instant miracles...seems like it took about a year for my vocal cords to heal after finally figuring out how to get my LPR under control, so I already know that all I can do is wait and be patient.
Well, it's been two years now, so hopefully I start seeing some improvements soon.
It does seem like I have a lot less fatigue these days, but I also haven't been working as hard, so it's difficult to say that it's one thing or the other.
Dryness and food allergies seem about the same.
I only took my third dose a few weeks ago though, so it's still "early days", so to speak. Not giving up hope, just a small update.
IIRC, my first dose was 5, my second dose was 15, and my third dose was 10. The second dose gave me really bad "worm flu" for a day or two (severe nausea all day), so I decided to lower it a little.
I have discussed this with medical people for years. Most agree with the concept but will not recommend it until the FDA weighs in. As my symptoms have progressed I have become very close to trying it. I actually had this conversation as recently as this morning with a professional.
Rcristal
I have some observations. First of all, I don't see or hear about a line of people waiting to get this treatment. Also, I don't see a lot of doctors writing in favor of this treatment nor do I see any hospitals who use this for any or a lot of patients have their names in any magazines.
If there was a lot of positive input about this treatment I would expect to see the medical magazines over run with articles about the glory of this treatment.
And lastly, there are a few anti parasitic drugs and other drugs used to get rid of the worms that people have in their colon. Generally worms in colon have the tendency to migrate to other organs...one of them being the brain. Ii am inclined to wait this one out. Research needs to be done in large quantity and I do believe the medical community is not too inclined to get involved with this at this time. My opinion. No opinion of each person just opinion on worm therapy. Itish
What I failed to say in my previous post is that I recently spent 2 1/2 hours one on one with a well known Physician at a well known University discussing ALL of this. He has been interviewed many times. Later today I will post a couple of articles.
I am on the fence. However, as symptoms get worse I am strongly considering it. I will say that after reading a great deal on the topic, and not being in the medical field, the concept makes a great deal of sense.
Rcristal
just for your information, I just, in the past couple of weeks saw a new list of new drugs listed that are being used with good luck on Sjogrens. They are biologicals. I didn't take the time to write these down. I would think that a search would find them. I don't believe that a doctor or clinic/hospital was listed with the info. Irish
I suppose I should update, still haven't seen any improvements, but like I said, I wasn't expecting a miracle.
But I might also be doing it wrong...I've seen a lot of people say that they'll take one or two larvae on a monthly basis, or they'll mix it with other helminths...it's really hard to figure out dosing on this when there's no medical regulation at all.
But I will say, this last dose gave me a REAL bad case of worm flu...my blood pressure was bad for a day or two, I seriously thought I was going to pass out at work.
I am concerned that these issues could reflect on your autoimmune disease. Have you checked with a doctor....meirish
I would think they can carry viruses