Author Topic: New treatment  (Read 2061 times)

Sharon

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Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

Pete0211

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Re: New treatment
« Reply #1 on: March 18, 2017, 05:46:36 PM »
That's great - all the benefit of the parasite, but without the parasite.
Male 49 y/o; Undergoing Primary SJS diagnosis process; Cevimeline, Ubiquinol, Calcium, Magnesium, Potassium,Vit. D3, Restasis

Sharon

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Re: New treatment
« Reply #2 on: March 18, 2017, 06:13:52 PM »
Exactly!
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

Nymph

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Re: New treatment
« Reply #3 on: March 18, 2017, 06:28:04 PM »
Sign me up!!! I might even make a trip to Israel soon and see if I can get in on it.   :D
38 y.o. teacher; anti-CCP+, RF+, otherwise seronegative; POTS; Plaquenil, Allegra, Depakote, Neurolink, C, probiotic, multi-V, magnesium, quercetin, NAC, DHEA, fish oil, D3, turmeric, ubiquinol; <3 my neti pot

Kathy57

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Re: New treatment
« Reply #4 on: March 18, 2017, 07:50:36 PM »
Interesting!  I would try it.  I'd like to hear more about it
Kathy
Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer

bluegardenia

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Re: New treatment
« Reply #5 on: March 19, 2017, 05:07:59 AM »
this would be  really great but  there are no news about this, articles, official sites, medical magazines
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

Sharon

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Re: New treatment
« Reply #6 on: March 19, 2017, 01:06:08 PM »
« Last Edit: March 19, 2017, 01:37:09 PM by Sharon »
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

ignatz

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Re: New treatment
« Reply #7 on: March 27, 2017, 02:23:47 PM »
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
This one got my attention because her most debilitation symptom is fatigue which is mine as well.




 
SLE with secondary Sjogrens, Raynauds.

Nymph

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Re: New treatment
« Reply #8 on: March 27, 2017, 02:46:39 PM »
Well, I will tell you what. I am ready to jump on a plane and head to wherever I can legally obtain this stuff.   ;)
38 y.o. teacher; anti-CCP+, RF+, otherwise seronegative; POTS; Plaquenil, Allegra, Depakote, Neurolink, C, probiotic, multi-V, magnesium, quercetin, NAC, DHEA, fish oil, D3, turmeric, ubiquinol; <3 my neti pot

AnneNeville

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Re: New treatment
« Reply #9 on: March 28, 2017, 05:01:02 AM »
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 . . .
Diagnosed with primary SS 2/2017 after 20+ years. Double vision from 6th nerve palsy, severe anxiety (now gone!), fatigue, dry eyes. Now: 12.5 mg Prednisone (burst), 200 mg Plaquenil, Prozac, Wellbutrin, Restasis, Xiidra.

WhatYouSjo

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Re: New treatment
« Reply #10 on: March 28, 2017, 09:28:39 AM »
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.
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, select supplements, helminthic therapy, LDN, and CBD. My treatment regimen

You can visit my website at http://www.whatyousjo.com

AnneNeville

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Re: New treatment
« Reply #11 on: March 28, 2017, 09:33:41 AM »
Good to know that!
Diagnosed with primary SS 2/2017 after 20+ years. Double vision from 6th nerve palsy, severe anxiety (now gone!), fatigue, dry eyes. Now: 12.5 mg Prednisone (burst), 200 mg Plaquenil, Prozac, Wellbutrin, Restasis, Xiidra.

araminta

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Re: New treatment
« Reply #12 on: March 29, 2017, 03:54:30 AM »
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?
Dry eyes (MGD),dry nose, dry mouth, labyrinthitis, rashes, dry skin, mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative and no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes.

wendyoh

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Re: New treatment
« Reply #13 on: March 29, 2017, 04:02:06 AM »
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 ....
sjogrens, cervical stenosis, bulging cervical discs 4 level, DDS, DJD, emerging vertigo, cfs, fms, gerd, plantar fascitis, corneal erosion, some other stuff :)
not trained in medical field so just share my experience and opinions as a consumer and lay researcher trying to get more well-ness

WhatYouSjo

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Re: New treatment
« Reply #14 on: March 29, 2017, 08:19:52 AM »
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.
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, select supplements, helminthic therapy, LDN, and CBD. My treatment regimen

You can visit my website at http://www.whatyousjo.com