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Avatar universal

Keep an eye out for snake oil and overconfident salesman.

I bet PATM is a goldmine for alternative health specialists and anyone wanting to sell us lots of supplements. The PATM community is a group of desperate individuals looking for a solution to a problem that traditional doctors don't take seriously - we'll buy anything if you promise it will cure us.
          We don't currently know what causes PATM - I encourage speculation, hypotheses, and random information about what MIGHT be the cause/mechanism of PATM, but when you start recommending an (unconfirmed) course of action for others to follow, please have something tangible to back you up (placebo-controlled studies, lab tests, or advice from a doctor who recognizes your PATM as legitimate).
          PATM may or may not be related to candida - there are tests you can perform to determine if you might have candida (they're not perfect, but they're better than mentally diagnosing yourself). There are also plenty of treatments for candida that do not require purchasing supplements. Even if you don't have health insurance, it would be cheaper in the long run to go to a doctor, request tests for candida, and then pay for whatever treatment they may recommend. Upfront, the costs will seem higher, but when you think about spending $40+ on a month's supply of some supplement, which you will have undoubtedly been told to take for longer than just a month (of course), the costs will even out. You can also try to control candida by modifying your diet.
          PATM may or may not be related to TMAU. A PATM/TMAU connection is currently my preferred hypothesis, but I have no empirical evidence to back it up (but then I'm not telling people that the cure for PATM is to purchase some supplement targeted to TMAU consumers). Most notably, if PATM is related to TMAU, then there is no cure, only dietary/behavioral modifications.
          PATM may or may not be related to a parasite or some infection that hasn't been documented yet in the medical community. This seems a little less likely to me, but stranger things have happened. Importantly, if PATM is related to an infectious condition, then we absolutely REQUIRE the help of medical researchers to help us determine where the infection came from.
          If this forum is ever going to serve us in a meaningful way, we need to develop a filter for parasitic posts and pseudoscientific information.
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Avatar universal
I understand your concern about placing too much faith in supplements that are recommended on this website.  But I take issue with several of your statements.

You say:  "I bet PATM is a goldmine for alternative health specialists and anyone wanting to sell us lots of supplements."
I find this a bit laughable.  I have seen no evidence of alternative health specialists commenting on these forums trying to sell supplements.   I doubt they would even have the time to.  Besides, PATM is such a rare disease that all the sufferers in the world hardly represent the "goldmine" that you are talking about.  If you've seen such advertisers promoting their products on here, please identify them.

You say:  "When you start recommending an (unconfirmed) course of action for others to follow, please have something tangible to back you up (placebo-controlled studies, lab tests, or advice from a doctor who recognizes your PATM as legitimate)."  I also find this statement ridiculous.  Who on here has the money or access to conduct or request studies or lab tests?  Many people on here are actually unemployed or poor because their conditions prevent them form keeping a stable job.  Your expectations are not realistic at all.

I think there's no harm in people stating what solutions worked for them -- even if they are supplements.  Right now, sharing information from firsthand experience is the only realistic solution we have.  People are smart enough to decide whether they want to try something or not, and abandon it if it doesn't work.  You honestly sound like you are venting because you might not be able to afford supplements, or have not had success with them, and you are jealous of other people who have or can.  That's not a very nice way to be.  
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You say "experimenting with supplements" as if it means experimenting with illegal drugs.  The reason there aren't a lot of scientific evidence to support the efficacy of many supplements (and why they have not received official blessing from the FDA) is that the pharmaceutical industry is invested in making sure they are not taken seriously.  Why?  Because it is afraid of the competition and lost profits.  But in the absence of studies, the best support for efficacy is word of mouth -- first hand experience.  For example, there are over 1,000 customer reviews for Candida Cleanse on Amazon stating how effective it is in getting rid of candida.  That's not just "anecdotal" -- that kind of information is meaningful.  I tried it myself and found it highly effective.  As for lab tests, there's nothing wrong with taking them, but even if they do provide information, the doctors giving them do not know how the results link to PATM.  For example, I had a blood test that showed my liver enzymes were elevated.  Great, now what?  There was no medicine the doctor could prescribe for that, and there is no information about a possible link to PATM.  So ultimately the information didn't provide any meaningful plan of action.  It just made me feel a little more knowledgable about my body.
Having elevated liver enzymes means that liver cells are leaking substances into the bloodstream that aren't supposed to be there. This is interesting information because it suggests a possible mechanism for how PATM could operate: Some substance (possibly a by-product of incomplete liver detoxification or something like that) is getting into our bloodstream, and once a substance is in our bloodstream, it can easily get out into the open via our lungs, sweat glands, etc.
          It's especially interesting if multiple people with PATM also have elevated liver enzymes. It might not help you out as an individual to know that you have elevated liver enzymes (although doctors will take you more seriously if you present with something objectively suspicious like elevated liver enzymes, and you could choose to avoid alcohol or make other lifestyle changes based on the information), but it helps us out as a community to know whether elevated liver enzymes are a common feature of PATM or not. The same is true for any other lab test (e.g., maybe people with PATM have similar vitamin/mineral deficiencies, or have similar abnormal bacteria in their stools, etc.).
I just want to add that my elevated liver enzymes were the primary reason that I was willing to try protein powder as a supplement. Protein powder is great for boosting glutathione levels, which helps improve liver function, as demonstrated in (among others): Meek, Beeh, and Buhl (2002) "Effects of long-term supplementation with whey proteins on plasma glutathione levels of HIV-infected patients".
          The protein powder did positively affect my overall health (more energy, more muscle mass, thicker hair), but it did not cure my PATM. I think Hopeful12345's recommendation of protein powder is great: Protein powder seems to improve the mucosal lining of the gastrointestinal tract and it helps to optimize liver function, so if anyone has the disposable income to get high-quality protein powder, go ahead and get it (the science backs it up). But despite its overall health benefits, I did not find it to be a cure for PATM, even after a solid 6 months of using it.
Avatar universal
I'm responding to all of your comments here, Patmsufferer, as I don't want to have to do it in multiple places.  First of all, I will agree that lab tests can be helpful in allowing us to know if there are common symptoms among people who have PATM, which can be helpful in choosing treatments.  But most people want a short-term answer as well -- as this is a problem that affects us every day and every minute of our lives -- basically, whenever we are around anyone else.  So while we need studies and tests for long-term solutions, we also need short-term suggestions to preserve our sanity, because this condition can be very stressing and depressing.

As for me using the headline "The PATM Cure is Here" -- I know it sounds overconfident.  That was sort of my intention.  I wanted to make a headline that would grab people's attention -- largely because there are so many other threads.  That said, there were no nefarious intentions behind it -- I just wanted to let everyone know that after a few years of dealing with this problem, I found some things that were very effective.  So I wasn't trying to be a snake oil salesman, I was just trying to make sure that people saw my message.  In fact, in my post I make it clear that these supplements were helpful on my journey; I never say once that "this will definitely work for you."  I hope that's clear.
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4 Comments
A lot of my posts were just me venting at the fact that I've spent a lot of money on supplements (thousands of dollars), and my PATM has not gotten any better (it might even be worse - it's hard to remember after 2 years). And patmfighter's posts just set me off a little bit (c'mon, 2 identical posts telling us to get in touch with him?), so I just wanted to let it be known that supplements had no effect for me and that this forum should not be exploited by "aroma therapists with a good knowledge of infectious diseases" trying to tell us that our PATM is infectious.
          As I hope my youtube videos show (I'd post the link, but I just learned you can't do that on medhelp), my PATM is pretty bad, and maybe it's too bad to be helped by supplements. If other people have milder symptoms, then perhaps boosting their liver functioning, immune functioning, and intestinal mucosal linings with protein powder is in fact enough to stave off these milder symptoms. If anyone out there is as desperate for a solution to PATM as I am, just be aware that it's extremely easy to plop down a lot of money for all sorts of supplements - don't let desperation affect your decision-making processes. Go for supplements that have a good track record, which most of Hopeful12345's do.
I understand your frustration with your situation.  I have two questions:

Which of these supplements have you actually tried?

-Candida Cleanse (Purely Holistic)
-Sacc Boullardii (Jarrow)
-Oxy Powder (GHC)
-Brown Rice Protein Powder (Jarrow) (please note, not talking about regular protein powder here)

And for the ones you tried, how much did you take (pills/spoonfuls per day) and how long did you take them?
I have taken:

NutriBiotic's Raw Organic Rice Protein, Vanilla: 1 scoop delivers 12 g of protein, and I wanted to get at least 40 g of protein per day (a dose recommended for immune system boosting), so I took 4 scoops per day (2 in the morning and 2 in the evening) for 2 months.

I took Sacc Boulardii by Jarrow as you recommended - 3 per day for 1 month, then 2 per day thereafter.

I tried Oxy-Powder for a month - I determined my serving to be 8 capsules per night, took this amount for 5 nights straight, and then maintained 8 capsules every 3-4 nights thereafter.

Candida Support (Now Foods) - 2 capsules twice daily - I tried taking it with and without food (for about 20 days).

After taking Candida Support, I continued on the Sacc Boulardii and protein powder and added Formula SF722 (Thorne Research) - 5 gelcaps, 3 times per day (for about a month).

While taking all of the above supplements (representing about 2 months of intervention), I was also taking Dipan-9 (Thorne Research), which contains pancreatic enzymes (e.g., protease, amylase, and lipase), which attack the cell walls of candida and bacteria (if taken between meals, which is what I did - if taken with meals, they primarily aid digestion of food).

I also took Betaine HCL (Now Foods) and Ox Bile (Nutricology) whenever I ate foods with lots of protein (e.g., chicken breast)

I was also taking Culturelle, Original Kombucha Capsules (Pronatura), as well as activated B-vitamins throughout this intervention.

After this intervention, I began taking Mt. Capra, Double Bonded Protein, Vanilla Bean, since whey protein contains more amino acids than rice protein, and whey protein is more heavily studied that rice protein. This protein powder is very expensive, but also quite medically efficacious (although not for my PATM). I took this for six months.

Unfortunately, this isn't even an exhaustive list of all the supplements I've tried over the past 2 years.

I never tried Candida Cleanse by Purely Holistic, but it looks like a lot of its ingredients should have been provided by Candida Support as well as the probiotics/digestive enzymes I was taking (with the exception of cellulase, which is the primary ingredient I might get excited about with Candida Cleanse).

I would hope that our PATM doesn't depend on the brand of supplements we take, but rather on the active ingredients, and cellulase is the only interesting ingredient that my intervention lacked that Candida Cleanse might have supplied. The reason cellulase is interesting is because our bodies do not have the ability to digest cellulose (hence we can't digest plant material like tree bark), so if any fungi/bacteria are protected by cellulose, then it would be very difficult for our digestive system to attack them without supplemental cellulase.

But one would still think that there should have been some alleviation of PATM after taking most of these supplements, but I did not see a reduction.

I recently got some interesting results from a stool sample test and will post those shortly.
Thanks for sharing.  It sounds like you tried a lot of things.

Here's what I suggest:

1) Tackle candida first.  Give Candida Cleanse a try.  It has a significant difference from Candida Support in  two different ways:  a) It has a different format (oil instead of powder) and higher dosage of oregano (500 mg vs. 200 mg).  Oregano is likely the most powerful herb for fighting candida.  b) It has Lactobacillus acidophilus, one of the best probiotic strains for fighting candida (see "Choosing a Probiotic" on The Candida Diet website).  It can only be purchased on Amazon.  There are 120 capsules in a bottle; take four per day at the same time for the most impactful dose.  Within a week you should start seeing powerful detox effects (headaches, excess mucus in your throat, etc.), which is good because it means the candida is dying.

2) After you finish the Candida Cleanse, focus on leaky gut (since it is largely caused by holes that remain after killing candida).  I know you tried brown rice powder already, so I'd like to suggest something similar but different:  Perfect Hydrolyzed Collagen by Perfect Supplements.  Like Brown Rice Powder, it has numerous amino acids.  However, collagen is also one of the best supplements for healing your gut lining, and also provides a number of other benefits (skin, hair, etc.).  The bottle comes with a scoop; take two scoops first thing in the morning with a mug of water.  You should start seeing a decline in reactions in 3 weeks or so.  If you're not noticing anything, I'd recommend you give the Brown Rice Powder by Jarrow formulas a try, since it does have some different ingredients from the one you used.

Best of luck with everything.
Avatar universal
Another concern I have with relying on supplements is that, if you have a fungal or bacterial infection, it might not be advisable to take continuous, mild treatments for it (i.e., treatments that don't immediately reduce the population of fungi/bacteria to levels the immune systems can handle by itself). If you take a mild supplement for candida, you could end up selectively breeding a stronger strain of candida in your body. This might explain why there seems to be a lot of relapse with PATM (and ever newer recommendations for more and more supplements).
          When you take an anti-candida supplement for the first time, let's say it works well and your PATM diminishes (it never has for me). After a couple of months, however, your PATM comes back, and you assume it's because your supplement wasn't strong enough. So you find a stronger supplement. You started with oregano oil, so you move on to caprylic acid, and maybe you even work all the way up to things like undecylenic acid (Formula SF722 from Thorne - not effective for me), which is supposed to be substantially more effective than caprylic acid (and maybe it is, and my PATM just isn't caused by candida). The problem is that each new supplement might only be effective against the weakest strains of candida in your body, and by getting rid of them with the supplements, you gave stronger strains free rein to multiply.
         If I had a severe fungal infection (and a fungal infection that causes something like PATM should be severe), then I would want to hit it hard with an anti-fungal medication in one shot. Anything less might just end up making the infection stronger and stronger. If I ever take a course of anti-fungals or antibiotics (and I'm currently going through tests to see if I could use them), then I would be willing to invest in expensive probiotics to try to rebuild my gut flora, as a one-time investment in my health. But sustained use of probiotics/supplements seems, at best, like a waste of money, and counterproductive at worst (because it might ultimately encourage the growth of more resistant strains of fungi/bacteria).  
        
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          I will admit that my post was based on evolutionary theory in general, and not on any study in particular. Drug-resistant fungi and bacteria are a well-documented problem with antibiotics and anti-fungal medications, and I don't mean to suggest that taking an anti-fungal is by any means "risk-free". But if it is taken correctly, at the right dosage, for the prescribed amount of time, and as a one-time deal, the risks of creating a drug-resistant strain can be minimized.
          I have recently found a post on this issue from the "Candida Crusher". He, among other naturopaths, suggests that candida does not develop a resistance to caprylic acid (although he does not cite any studies that actually demonstrate this, and I failed to find any on Pubmed). He suggests that the reason candida does not develop a resistance to caprylic acid is because it is a more heterogeneous substance (i.e., it has more compounds in it) than an anti-fungal medication like Nystatin - caprylic acid is like a "shotgun" whereas Nystatin is like a "sniper rifle", as he puts it.
          Now, he could be entirely correct, and maybe the inherent complexity of caprylic acid prevents candida from developing a resistance to it - I don't know, I'm not a biochemist and I'm willing to be wrong when I am. During my literature search, I encountered studies that suggest a cocktail of anti-fungal medication should be administered to minimize the risk of drug-resistant candida, so maybe it's true that the complexity of the anti-fungal agent matters when it comes to preventing drug-resistance.
          I would still like to point out, though, that Erik Bakker (aka Candida Crusher) also promotes a product called CanXida on his website, so there might be a slight conflict of interests in some of his advice. I couldn't find any studies that showed caprylic acid DIDN'T eventually result in resistance in the same way that anti-fungals do (possibly because studies on caprylic acid are still relatively new and the question of when candida might develop a resistance to it won't come out until caprylic acid is more widely adopted), so it seems to me that most evidence for saying that "natural" remedies don't carry risks of developing drug-resistant strains comes, anecdotally, from naturopaths, i.e., people who have a financial incentive to get you to use products/services they recommend. But if I'm wrong, and credible doctors actually do agree that natural products don't carry the same problems of resistance that synthesized products do, then please tell me. From what I can gather, though, the problem of drug-resistance doesn't depend on drugs being synthesized - it's more to do with them being over-prescribed. And I don't know about anyone else, but I for one believe that if PATM is caused by candida (which I don't think it is), then it would definitely merit prescription drug use.
You said:  "so it seems to me that most evidence for saying that "natural" remedies don't carry risks of developing drug-resistant strains comes, anecdotally, from naturopaths."

I never specifically said this is the case (or that naturopaths have said this).  I merely said that a) There is discussion/evidence of fungal resistance to prescription drugs and b) there is no evidence of fungal resistance to supplements.  I said supplements are more likely to be safer IN GENERAL due to their natural ingredients, but was not specifically commenting on their impact on candida.

Again, I'll say this -- you pointed out one person on this site who you said seemed like a salesmen.  That's just one person.  I started frequenting this site since 2013, and I have seen very few people who appear to be "salespeople" or naturopaths hawking their products.  I doubt they'd have time to do so.  The majority of people who have shared supplements are people who have actually tried them and saw positive results.  So I just think it's silly to discount these firsthand results because there haven't been extensive studies (the likes of which we are not going to see any time soon) or lab results (which many people have taken and presented on here anyway).  You are sounding an alarm over something that's nowhere near a big problem.
          You say "there is no evidence of fungal resistance to supplements." Exactly, there is no evidence, neither for nor against it. The reason there's evidence for candida developing a resistance to anti-fungals is because it's a topic that's important enough to generate research. There just hasn't been enough research on "natural" remedies yet.
          I realize that there's plenty of research showing the anti-fungal properties of coconut oil, etc., which is great, but that doesn't mean there's been enough research to establish the best way to administer these natural remedies or to discover possible complications such as drug-resistance with these remedies.
           I just think it's a little premature for someone to give us recommendations for supplements in a post entitled "The PATM cure is here". I don't question the medical efficacy of all of your recommendations: S. boulardii and protein powder are great for people's health (although, as previous posters have pointed out, some rice protein powders might have issues with heavy metals - but maybe not all). Oxy-powder is still questionable; it's a product for which evidence simply doesn't exist (that doesn't mean it doesn't work, but it also doesn't mean it does work).
          What I question is your confidence. If your method worked for you, that's great, and maybe you actually have found a treatment for some forms of PATM. But my PATM has not responded to any supplemental interventions (but maybe I'm just an outlier), and I just wanted to suggest that your method might not be the cure (and without double-blind clinical studies, it should not be advertised as such) and that the approximately $125 worth of supplements you suggest might be better invested elsewhere.
Avatar universal
P.S

I also since 2011 - have chosen to eliminate dairy , gluten, fried foods, junk foods, meat from my daily food choices. I do eat shrimp whenever .  I choose to use Stevia for my smoothies instead of sugar.
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Avatar universal
God Bless you always PATMsufferer

I have been a posting contributor to this forum since the year 2011 - an amazing five years !

My focus has been and will continue to be - is to

Share my journey with PATM and what has helped me become PATM free and fixing and tweaking any hiccups of reoccurrence along the way.

My success is due to my decision to change my lifestyle by enjoying plant based food choices the majority of the time, staying hydrated , sauna and/or exercise at least 5 times a week to release toxins from my body , oil pulling each morning and taking supplements on a daily basis that I have found - to help me remain PATM free.

I encourage everyone to be proactive in being your own health advocate - googling computer searches continue to be a great help to me.

peace,joy and good health to you and everyone on this forum always in whatever paths you decide are best for you !



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