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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Oh heck, madie, of course we want to hear from you. I'm thinking more about the healthy scientists talking about RS on the other thread, or people with completely different illnesses when I suggest that that we limit reports in this thread.So should I not post here? I've got CFS, but I don't understand the distinction between CFS and ME for those of us who are relatively functional. I don't know if my experiences apply?
Ripley said:What we've learned over at FTA (freetheanimal.com) from Tatertot, Dr. Grace, and others, is that a variety of fibers need to co-exist in the diet. RS alongside Inulin, FOS, GOS, MOS, etc. And this is because RS2 alone ferments quite rapidly in the caecum (although, interestingly, RS3 from cooked/cooled starchy foods ferment slow and more distally, which is what we want). In other words, it's rapidly fermented. But eating RS2 alongside other fibers helps move the fermentation more distally and helps slows its rate of fermentation down.
After seeing people having some mixed — or in some cases underwhelming — results with Potato Starch (PS) alone, I recommended people start experimenting with other prebiotic fibers like Larch Arabinogalactan (LAG) and Beta Glucans and other polysaccharides — and ideally some of those found in medicinal mushrooms like Turkey Tail, Reishi or chaga.
However, this is where caution needed to be exercised. The feedback I got on those who tried LAG and medicinal mushrooms is that some found them to be too stimulating to the immune system if they went too fast. So, I believe there has been some merit in going very slowly so as not to cause an overwhelming blowback of endotoxins.
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I could be wrong, but I got the sense that some people were hesitant to try too many probiotics. I can't remember though. I believe Prescript Assist was popular, and AOR-Probiotic 3. Many people seemed to have their own favorites though.
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I'd like @Vegas to clarify, but I believe most of his benefits are coming from small amounts of Larch Arabinogalactan (LAG). I know he used some PS as well, but the LAG seemed to be the key if I recall. I believe he said that LAG actually helped him tolerate PS better.
@Gestalt was very adventurous, at one point trying 20g a day of LAG (early in the day, as it is energizing) in addition to the 3-4tbsp of PS (taken 5 hrs before sleep). I don't even think I could tolerate that much LAG He had very good results if I recall, but he's had some regression due to an experimental stint with NAG/chitin (which we now know might apparently can feed candida).
So... I think LAG is showing some promise. And truth be told, LAG is actually advertised to help CFS patients (one of the reasons I mentioned it in the first place). The makers of LAG claim that it increases NK cells and enhances the immune response while supporting the lymphatic system, and this was believed to be beneficial for ME/CFS patients. (Here's a little layman's cartoon explaining how LAG works, for those who are interested). The amazing thing is that you don't need that much. But, LAG is a bit complicated in that there are different kinds of LAG with different molecular weights offering different kinds of targets.
I believe @Gestalt recommends a low molecular weight LAG (ResistAid or Thorne's Arabinex... they are the same thing) for dealing with immune issues. The larger molecular weight (FiberAid) LAG is supposedly a better LAG for general gut health. But if I recall, @Vegas is using FiberAid so whatever benefit appears to be found in both kinds of LAGs to some degree.
More info: http://www.nutritioninnovation.com/agpaper.pdf
I do recall @Gestalt saying he's tried a number of LAGs and preferred ResistAid for their quality (smells like fresh pine trees) and for its preservation of antioxidants. ResistAid is manufactured by Lonza, and they are just a supplier. If you want ResistAid, you need to find out which LAG products are supplied by ResistAid in your country. Thorne's Arrabinex is ResistAid, but it is $40 for 100g (a normal dose is 2g if I recall). NaturalDoctor ResistAid is the exact same product (again, it's also just ResistAid by Lonza), but sells for $20/100g and is only available in the US — though they seem to be out of stock at the moment. Lonza is a big Swiss company, from what I understand, so ResistAid products should be available worldwide.
FiberAid sells for under $20 for 250g, but the normal dose is supposed to be 4g I believe (though, I think @Vegas uses much less than that).
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My guess is all these products are on a sliding scale based on their molecular weights (i.e. "polydisparity") and their individual quality controls.
It's probably best to experiment with different brands of LAG and see what works for you. But, don't automatically buy the cheapest one. The molecular weights are all different (each purportedly promoting different effects), the doses are different (skewing the cost effectiveness of seemingly cheaper products), and the potency is different. So, the best approach may be to experiment.
Bark - healthy and tasty! (via Google Translate) said:A special status in elderly Sami cuisine consumed dried or roasted inner bark of pine. This part of the bark, i.e. the thin layer between the wood and the thick outer bark is rich in carbohydrates, vitamin C and minerals. It also has cholesterol lowering properties…
…The use of the inner bark as a food supplement has been all over the Saami settlement area, Sápmi. Bark has also been used as a foodstuff among Siberian peoples and of Native Americans in North America…
..The bark is harvested in large quantities during savningsperioden in late June and was put up in storage for the winter…The bark could be eaten fresh, and was perceived then as a delicacy. Dried and chopped into flakes mixed it in various dishes. Bark flakes were a common ingredient in fish, meat and blood soups and broths…
…Pine bark has in no way been nödföda but on the contrary been a coveted staple resource.[LINK]
Good sources to purchase LAG??
Thorne said:Pharmaceutical-grade larch arabinogalactan is a fine, dry, off-white powder with a slightly sweet taste and mild pine-like odor. It dissolves completely in water or juice, is low in viscosity and therefore easy to administer, even to children. It is composed of galactose and arabinose molecules in a 6:1 ratio, with a small amount of glucuronic acid. Arabinogalactans are long, densely branched polysaccharides of varying molecular weights (10,000-120,000). Lower molecular weight polysaccharides typically exhibit an anti-inflammatory, anti-complement, antiallergy effect, while those of higher weights stimulate natural killer (NK) cell cytotoxicity and reticuloendothelial cells. In the case of larch arabinogalactan, molecular weights of the two major fractions are 16,000 and 100,000, perhaps accounting for its wide range of therapeutic properties.[2] [LINK]
[2] D’Adamo P. Larch arabinogalactan. J Naturopath Med 1996;6:33-37.
@madietodd Do you think the virus could have been from prescript assist? I got a sinus infection after loading up on that probiotic for a while. I don't know if there was a connection between those two things, but P A does have some different strains of things than the normal probiotics. I am taking it again now and so far I am okay. I guess moderation is the key?
I am on ABX too and it is tough to get my gut into shape during this treatment. I am only doing one tablespoon or so of potato starch now.
I started on LAG (Swanson's FiberAid) 1/4 tsp Seemed to tolerate it ok. I was trying several probiotics so haven't tried to up the dose. I have some PS but haven't yet tried it for fear of feeding the wrong bugs.And if I can just say... for those just tuning in...
Immune-stimulating fibers like LAG and those found in herbs (Echinacea) and medicinal mushrooms (turkey tail, reishi, etc) seem to be a safer choice in that they aren't randomly feeding whatever's in your gut — rather they are taken in small quantities and hook right into the immune system to modulate it.
Yup, that's what happened. I was surprised at the way I was tolerating the pre & probiotics and was seeing some tiny improvements. Then, after taking them each day things deteriorated and got headaches. The past couple nights I ended up in severe migraine territory. (a very familiar place for me)And even if you have enough good bacteria, crowding out the bad bugs too quickly can cause endotoxins to flood your system and you might have trouble clearing those endotoxins (what seems like a honeymoon period, followed by a regression).
Has a pine-fresh scent!! Horrors! I do not tolerate pine-smelling anything, including actual evergreens. So glad you mentioned this. I would not have wanted to waste my money on this. This type of info is very important to those of us with sensitivities.ResistAid™ seems to be very high quality from what I've gathered (hat tip to @Gestalt for his excellent work on this). They have a production process to preserve the antioxidants and it has a lower molecular weight than other products (which supposedly better targets the immune system). It also has a pine-fresh scent, indicating its quality.
I am unable to eat much food due to sensitivities. I am hoping the pre/probiotics can help with this. Am I correct in thinking that, for the time being anyway, I should avoid inulin, RS, FOS & GOS and instead focus on the "immune-stimulating" ones? I take LAG, but I don't know what the others you list are.Truthfully, I am amazed at the potency of the immune-stimulating fibers With most traditional prebiotics, a healthy individual is recommended to consume at least 20g-30g of total fiber/prebiotics per day, preferably through food, (inulin, RS, FOS, GOS, etc).
But, the immune-stimulating fibers (LAG, ß-glucan, PSK, PSP, etc.) have effects at tiny doses. The bacteria seem to process some of them into metabolites and they also appear to get persorbed into the blood, right into the immune system to do their work. Fascinating stuff.
I find it very interesting that LAG may possibly be able to directly modulate the immune system. Would be nice to have some proper studies done to see if this is really the case.
I noticed increasing brain fog, and stopped the 2T potato starch. The next morning the brain fog was gone, and this improvement has stuck. Since I have a history of problems with potato, I'm giving up on this form of RS.