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Re: Potential "Patch" for AS [Re: Onice1] #284017 02/02/20 02:23 AM
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Originally Posted by Onice1
PainintheAS - I got to report that I only felt a bit better one to two days after the mimicking fast diet and then as I ate my regular diet (and more) it all came back bad. I'm just wondering if I should try that no starch diet if even though I certainly don't want to. I was going to do the fast again but with my own foods. I've spent days recreating the Prolon foods on a spreadsheet. I forgot, have you ever been on the no starch diet - basically meat, fish, and just greens? In the meanwhile I've been trying some CBD, (no THC), at 25 mg. at night and I got some topical sprays and creams from Herbalmana that have a DMSO base with CBD and/or just herbs but even after a few days applying twice a day to wrists, knees and ankles, maybe minimal if at all relief. I even have some weird symptoms in my eyes but the opthamologist said it is like a pre migraine but with no migraine. Strange. Nobody so far says I have RA, but that it is a version of spondyloarthropathy that is in my all my joints. I definitely have some kyphosis and if I stand too long my back hurts along with feet.


I am on a keto diet and have been on it for a long time. MINIMAL carbs, but essentially impossible to eliminate. Fasting for a day yesterday I felt even better. I reset my pain receptors and pain signaling pathways each week with natural "fungi." This has helped a lot too.

Re: Potential "Patch" for AS [Re: PainintheAS] #284019 02/06/20 11:04 AM
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Nail in the coffin for me folks. Direct biopsies of HLA-B27+ tissue from joints and gut lining demonstrates B27 homodimers are forming and tagging NK cells as well as having interaction with KIR3DL2 to promote cell-survivability instead of undergoing apoptosis (promoting an enduring state of inflammation.) This directly demonstrates why the gut is such an important area to treat in the disease, as it can calm the progression of the disease (it also explains the joint involvement.) Mucosal interactions on epithelial linings will upregulate the very cytokines that are out of balance with the genetic interactions elsewhere (like joints.) Upregulated Th-17 immunity and IL-23R is coded for both at the genetic level through these homodimer reactions, as well as by the epithelial lining interactions due to the B27 homodimers on the gut surface + the microbiota interaction being altered on these tissues (likely due to the presence of increased homodimers.) The gut reinforces this skewed cytokine profile, driving it harder, thus causing the inflammation in the joints to continually worsen. There appears to be a substance, HD6, that binds to HLA-B27 homodimers and stops them from interacting with all of the molecules mentioned above. We NEED to get on finding a way to get this in our hands. I see it in papers going back to 2012 and earlier. If this substance has been available for so long, why are drugs focusing on blocking only IL-17 etc? This is absurd. HD6 was shown to interact ONLY with B27 homodimers and leave all other forms of B27 structures unaffected, including other HLA types, such as A, etc. In the studies it stopped the production of the Th-17 / IL-23R cytokines. This basically solves all the problems, so this is like almost directly clear evidence that I've been right...that the treatments out there are barbaric...and purposely so. They know blocking the signals is never going to cure us, with drugs like biologics. It's clear in these papers that you have to stop the creation and tagging of homodimers to stop the disease...and we have the ability to do that! ???

Link

Supporting Links Validating HD6 Efficacy (and the fact that it has been tested in humans more than once!)
Link
Link (scroll to the end)
Link (HD5 mentioned in this paper as a treatment used!)
Link
Link (Full text)

Re: Potential "Patch" for AS [Re: PainintheAS] #284020 02/06/20 04:16 PM
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in 2018 during treatment with Arcoxia (basically another COX2 inhibitor that we are being prescribed in Europe - quite powerfull though) i had an ileum biopsy for which result indicated eosinophilic ileitis. At that time I wanted to know if perhaps Arcoxia might cause that. They said that if any drug then wouild be penetration of neutrofills into mucosal wall not eosinophils. 2 years later, I manage AS with as needed Arcoxia 1 or 2 per month. The last 2 times I took it 3 hours later I developed nasty rush on my face (essentially red patches all over my head and face as well as neck and upper abdomen) that looked quite similar to the ones I have seen on the camera when undergoing biopsy. They disappeared almost entirely within 12 hours. initially I thought it was MSM allergic reaction but I discontinued MSM and happened again after taking Arcoxia. There is one more possibility that I am going to test to confirm it was not something else. Basically I take 4000IU vit D3 Daily and that day I was quite exposed to direct sun 18 C degrees. Dermatologist day later told me to stop Arcoxia right away.
By the way, this week I performed all the blood analysis that came back spotless - CRP - 3, VSH - 12, fibrinogen 350. I have some ketone bodies traces in my urine indicating perhaps my body tries to use other sources of energy than carbs which could be an outcome of fasting. I have minor pains, especially during abrupt weather changes, and no inflammation since 3 months. I take 1 or 2 NSAID per month and quite many supplements including those studied by the creator of above thread (to whom I am very Thankful). I will perform the next blood tests (still waiting for the tests on epithelial membrane permeability & metal allergens, as well as Glutathione S-transferases) in 3 months.


diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with AAU Nov 2017 (7 flares so far)
Eosinophilic Gastritis
Sulfasalazine 3g 08.2018-05.2019 (worked for AAU & peripheral)
Supplements:C/D, omega 3/Probiotic/ Mediterranean NSD/curcumin
swimming/yoga/pilates
Predonisone in case of another AAU flare
Re: Potential "Patch" for AS [Re: achala] #284021 02/06/20 07:42 PM
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Originally Posted by achala
I take 1 or 2 NSAID per month and quite many supplements including those studied by the creator of above thread (to whom I am very Thankful).


It's these kinds of things that make me try even harder to find answers and to help you all out. So glad to be able to help man! =)

Re: Potential "Patch" for AS [Re: PainintheAS] #284039 02/14/20 06:43 PM
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Hey all, so I have read a lot about helminth therapy and other parasites, too. Many that are desperate to reduce their pain have turned to helminth therapy in order to promote Th2 (regulatory) immunity, as opposed to Th17 immunity, which is inflammatory. Many have had success, however, some also struggle with a lot of side-effects related to these parasites. At any rate, parasites can evade the host immune system by suppressing it...this is known. The studies out there related to parasite therapy and autoimmune disease cannot be refuted. There is something there. I came across the holy grail, in my opinion. We've finally gotten beyond just observing the effects these parasites have when within the body. We actually have studied many of the compounds they create and administered them within studies, to great effect! These compounds include ES-62, tufsin-phosphorycholine, and P28GST to name a few. Check this out!

Link

Last edited by PainintheAS; 02/14/20 08:01 PM.
Re: Potential "Patch" for AS [Re: PainintheAS] #284040 02/15/20 05:56 AM
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Hi all - Some of this discussion above my head, but I think I should ask the rheumatologist if I have time, why this HD6 is not out there in use or if it is in more studies. I mean when they found a cure for hep-c, they didn't not put it out, just I bet at some exorbitant price. In mean while I've never been so bad even after going on fasting mimic diet twice. I just put the weight back on with more pain. So now I just read the Keystone Approach by Rebecca Fett and I was very impressed as she is focusing on spondy group of diseases and her diet approaches seem what most here seem to gravitate to - basically low starch - she has three levels and also discusses supplements/probiotics. I'm putting myself on level 2 which does eliminate most starches and the common inflammatory foods that are usually listed in all anti-inflammatory diets. I may struggle sticking to it when I travel to take care of my ailing mother, however, because I won't have access to a home kitchen. In meanwhile I've had these throat issues that may be caused by some mold or other allergy. I suspect something is really kicking up the joint/tendon swelling which has spread to my hips and sit bones. I'm getting really testy now - my sort of pun. I had a cyrex array 12 test done - only turning up equivocal IgG to borrelia burgdorferi (lyme) which means nothing in light of CDC negative standard lyme testing I have done before, and slight elevation of igG to stachybotrys chartarum (black toxic mold) so perhaps that is kicking up something. This array 12 looks at about 20 common infectious agents that I guess if one has high IgG to, indicates a strong past infection. Why IgM is not tested I don't know (for current infection). The interesting thing is I have some IgG to every other infective agent tested but not out of range. We have been challenged by our environment in the normal course of living I guess. Also for the heck of it, no results back yet, looking for food sensitivities array 10 (I know that that IgG food panels are poopooed by allergist as being bogus) and also another array looking for chemical exposures. But what I am really excited about is I just sent in my Viome Gut Intelligence test (yes, dot of poop it is). It will take about 6 weeks to get back. It all sounds too good to be true, what they claim they can tell about the state of your gut in regards to the foods you should eat/not eat to reduce inflammatory pathways (viome.com). They are having a sale so I fell for it. The box that the kit comes in says "Conflicting Food Advice is Now Obsolete". My rheumy knows about worms distracting the immune system but she has not suggested it yet.

Re: Potential "Patch" for AS [Re: Onice1] #284053 02/20/20 09:54 AM
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Originally Posted by Onice1
Hi all - Some of this discussion above my head, but I think I should ask the rheumatologist if I have time, why this HD6 is not out there in use or if it is in more studies. I mean when they found a cure for hep-c, they didn't not put it out, just I bet at some exorbitant price. In mean while I've never been so bad even after going on fasting mimic diet twice. I just put the weight back on with more pain. So now I just read the Keystone Approach by Rebecca Fett and I was very impressed as she is focusing on spondy group of diseases and her diet approaches seem what most here seem to gravitate to - basically low starch - she has three levels and also discusses supplements/probiotics. I'm putting myself on level 2 which does eliminate most starches and the common inflammatory foods that are usually listed in all anti-inflammatory diets. I may struggle sticking to it when I travel to take care of my ailing mother, however, because I won't have access to a home kitchen. In meanwhile I've had these throat issues that may be caused by some mold or other allergy. I suspect something is really kicking up the joint/tendon swelling which has spread to my hips and sit bones. I'm getting really testy now - my sort of pun. I had a cyrex array 12 test done - only turning up equivocal IgG to borrelia burgdorferi (lyme) which means nothing in light of CDC negative standard lyme testing I have done before, and slight elevation of igG to stachybotrys chartarum (black toxic mold) so perhaps that is kicking up something. This array 12 looks at about 20 common infectious agents that I guess if one has high IgG to, indicates a strong past infection. Why IgM is not tested I don't know (for current infection). The interesting thing is I have some IgG to every other infective agent tested but not out of range. We have been challenged by our environment in the normal course of living I guess. Also for the heck of it, no results back yet, looking for food sensitivities array 10 (I know that that IgG food panels are poopooed by allergist as being bogus) and also another array looking for chemical exposures. But what I am really excited about is I just sent in my Viome Gut Intelligence test (yes, dot of poop it is). It will take about 6 weeks to get back. It all sounds too good to be true, what they claim they can tell about the state of your gut in regards to the foods you should eat/not eat to reduce inflammatory pathways (viome.com). They are having a sale so I fell for it. The box that the kit comes in says "Conflicting Food Advice is Now Obsolete". My rheumy knows about worms distracting the immune system but she has not suggested it yet.


It seems to me you have a lot of infectious agents around, and inside. I would recommend checking out liftmode's baicalein. It's a strong antibacterial/antifungal as well as modulates inflammation. You have A LOT going on inside you and you need help clearing it. All the UTI's and things you're mentioning are being detected should be taken care of by a properly functioning immune system. If they are getting in, you are likely a "permissive" host. While you fight it, you can't eradicate it. I am taking baicalein powder in olive oil (recently read online that this is the way to go with it.) I was not having much success in coconut oil, so then I switched to this and MAN, what a difference. Within 5-10 minutes of taking this stuff, my pain drops by about 80%. For me, it's related to the homodimers formed by HLA-B27 for sure. This stuff is an IKB kinase inhibitor, which blocks these homodimers from forming, similar to sulfasalazine. However, baicalein is being studied for pretty much everything under the sun. You should read up on it. I am sure that it's antibacterial properties will help you out.

Re: Potential "Patch" for AS [Re: PainintheAS] #284073 02/27/20 05:04 PM
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Hello again,
I got my intestinal permeability results back and it seems the beta defensins are below the lower bracket level and histamine is high. No fungus/mushrooms, Kliebsiella normal. Lower levels of E.coli, bacteroides, bifido & lactobacillus & enterococcus.
Higher ph, probably due to protein intake.
Checked also LTT metal allergens all normal.
Genetic tests revealed no changes in enzyme activity of glutathione transferaze M1 and GST-T1.
Adding to it recent allergy to etoricoxib Cox-2 inhibitor
Any ideas? Can be food allergen? Crohn?
Possible suggestions on remedies?

Last edited by achala; 02/27/20 05:08 PM.

diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with AAU Nov 2017 (7 flares so far)
Eosinophilic Gastritis
Sulfasalazine 3g 08.2018-05.2019 (worked for AAU & peripheral)
Supplements:C/D, omega 3/Probiotic/ Mediterranean NSD/curcumin
swimming/yoga/pilates
Predonisone in case of another AAU flare
Re: Potential "Patch" for AS [Re: achala] #284077 03/01/20 01:27 AM
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Achala, how did you get an intestinal permeability test?
Did your doctor order it for you?


Background: 30 yr old male
Symptoms: Ps (scalp, elbows, knees) since 2000; PsSpa (neck, sacroiliac joint) since 2015
Dx: Osteoarthritis Aug, 2017; PsSpa Nov, 2018
Treatment: Meloxicam, Nov 2018-Jan 2019; Naproxen, Jan 2019-Jun 2019; Humira, Jun 2019-Present
Re: Potential "Patch" for AS [Re: achala] #284078 03/01/20 09:05 AM
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PainintheAS Offline OP
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Originally Posted by achala
Hello again,
I got my intestinal permeability results back and it seems the beta defensins are below the lower bracket level and histamine is high. No fungus/mushrooms, Kliebsiella normal. Lower levels of E.coli, bacteroides, bifido & lactobacillus & enterococcus.
Higher ph, probably due to protein intake.
Checked also LTT metal allergens all normal.
Genetic tests revealed no changes in enzyme activity of glutathione transferaze M1 and GST-T1.
Adding to it recent allergy to etoricoxib Cox-2 inhibitor
Any ideas? Can be food allergen? Crohn?
Possible suggestions on remedies?


High acidity seems more related to the byproducts of bacterial breakdown of your food than it is of protein supplementation, but I could be wrong. Generally, if gut bacteria are skewed, then the production of butyrate, propionate, and a few other metabolites are going to be out of whack. When my guts are severely out of whack, which is quite frequent, I get a very "acidic" stool, even if I had eaten no acidic foods. If your beta defensis are low, this is likely because your gut has been damaged. Increased acidity is likely an indicator of something going on that could be damaging your gut slowly with time. Your lower levels of the beneficial bacteria all indicate that you have a skewed balance, and quite similar to those with HLA-B27+ markers. I think you mentioned you are HLA-B27 negative, so this could be related to other genetics or some other event that skewed your gut into the wrong ecology. I would recommend you try to balance these guys out with a good diet, some antimicrobials, and proper pre/probiotic supplementation.

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