Author Topic: New treatment  (Read 2062 times)

SjoGirl

  • Hero Member
  • *****
  • Posts: 1764
Re: New treatment
« Reply #15 on: March 29, 2017, 11:24:04 AM »
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.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

araminta

  • Full Member
  • ***
  • Posts: 204
Re: New treatment
« Reply #16 on: March 29, 2017, 12:58:50 PM »
Thanks for your reply, WhatYouSjo.   It certainly sounds as if this type of treatment has potential to help SS sufferers.   
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.

SabbraCadabra

  • Jr. Member
  • **
  • Posts: 55
Re: New treatment
« Reply #17 on: March 30, 2017, 05:36:21 AM »
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.

wendyoh

  • Sr. Member
  • ****
  • Posts: 479
Re: New treatment
« Reply #18 on: March 30, 2017, 08:39:14 AM »
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
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

  • Full Member
  • ***
  • Posts: 123
    • What You Sjo
Re: New treatment
« Reply #19 on: March 30, 2017, 08:55:45 AM »
Wendyoh, there is a list 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. 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, particularly the Introduction to helminthic therapy document. The site is provider-agnostic, but they do provide a short description of the currently operating HT providers.
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

wendyoh

  • Sr. Member
  • ****
  • Posts: 479
Re: New treatment
« Reply #20 on: March 30, 2017, 01:29:59 PM »
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 ;)
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

wendyoh

  • Sr. Member
  • ****
  • Posts: 479
Re: New treatment
« Reply #21 on: March 30, 2017, 01:38:57 PM »
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
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

SabbraCadabra

  • Jr. Member
  • **
  • Posts: 55
Re: New treatment
« Reply #22 on: October 11, 2017, 05:55:58 AM »
...I think I'm about to take the plunge and order some NA...

*breathes deep*

katie1111

  • Full Member
  • ***
  • Posts: 187
Re: New treatment
« Reply #23 on: October 12, 2017, 08:24:00 AM »
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

SabbraCadabra

  • Jr. Member
  • **
  • Posts: 55
Re: New treatment
« Reply #24 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.

Sharon

  • Hero Member
  • *****
  • Posts: 1016
Re: New treatment
« Reply #25 on: November 09, 2017, 03:00:58 PM »
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.

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...

SabbraCadabra

  • Jr. Member
  • **
  • Posts: 55
Re: New treatment
« Reply #26 on: November 11, 2017, 08:37:28 PM »
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.

ignatz

  • Newbie
  • *
  • Posts: 41
Re: New treatment
« Reply #27 on: November 12, 2017, 04:32:40 AM »
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.
SLE with secondary Sjogrens, Raynauds.

WhatYouSjo

  • Full Member
  • ***
  • Posts: 123
    • What You Sjo
Re: New treatment
« Reply #28 on: November 12, 2017, 01:33:58 PM »
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.
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

SabbraCadabra

  • Jr. Member
  • **
  • Posts: 55
Re: New treatment
« Reply #29 on: November 13, 2017, 05:07:29 AM »
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.