Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by JaimeS, Feb 12, 2016.
i dont know @sarah darwins
I don't know really, but I've read that pathogens and even cancer cell utilize iron for growth.
I think I might have found a potential culprit: heparin. My own.
Heparin, a blood thinner, is produced by mast cells. Presumably this is more pronounced when infection is severe.
It's a defense mechanism. It's certainly only happened when I'm at my sickest, so we may have our answer. Or at least a tentative hypothesis that makes relative sense -- the most we can generally hope for!
To further support this hypothesis, my most recent bout of bleeding happened when I stopped my most recent antibiotic, and stopped once I bit the bullet and began consuming small amounts of probiotics. I don't do well with them, neurologically, but my digestive system is way happier with me right now... and I'm not bleeding like a hemophiliac anymore.
Nice detective work, Jaime. Out of curiosity, have you experimented with saccharomyces boulardii? I've been reading some things lately that suggest it helps with various healthy gut flora and is very prophylactic both during and soon after antibiotic treatment (Horowitz is very keen on it, and far from alone). Might be a bit less of an insult to the system than regular probiotics.
I've been doing a lot of research on iodine these days, and benefitting a lot from iodine supplementation. So I tend to view a lot of things through that lens at the moment. I've read testimonials of how iodine has significantly improved a very wide variety of health symptoms, but the one that may be applicable to what you describe has to do with blood artery health.
Some people supplementing with iodine have noticed significant improvement in varicose veins, and other types of vein "irregularities". I can easily see where the benefits could extend out to any number of circulatory health conditions, including stroke, cardiovascular disease, and much more.
I myself have noticed less pain in my body, better energy, far less brittle fingernails, very noticeably better overall muscle strength, enamel strengthening in my teeth, and more. And I thought for many years I had been supplementing with more than enough iodine through kelp tablets, and other means. Iodine supplementation might be worthwhile for you to consider researching.
I haven't, @sarah darwins ... but I've tried three different strains of probiotic and the result is always the same. Tingling up the back of the head, increased nuchal discomfort (what I think of as the 'encephalitic' part of M.E.), dizziness, blah-de-blah. Currently, I'm taking a probiotic proposed to not generate lactic acid, because I feared that was the problem last time. Turns out, no; it's not.
I'm hesitant to waste money when I've tried 'maybe THIS probiotic won't bother me' three times in a row...
I know that feeling! Currently, everything is "infective" for me. I'm diagnosing people on the street, I swear.
Tried iodine at one point. Made me feel weird and jittery, like a high dose of caffeine. I could have been taking the wrong thing or the wrong dose, though... unlike probiotics, which I've tried in several forms / types.
However, my thyroid numbers are all good as well.
Bacteria like iron, and proliferate when it's abundant; but lactoferrin has to have iron to help produce an effective immune response. There is a really good summary article on infection as it relates to iron here:
Cassat JE, Skaar EP. Iron in Infection and Immunity. Cell host & microbe. 2013;13(5):509-519. doi:10.1016/j.chom.2013.04.010.
You could start a thread asking for links to sites that have small sample packs of probiotics. iHerb sometimes has low cost or free sample sizes for products. Or you could ask other members here to part with some of their own shelf-stable probiotics if you cover the cost of shipping.
Totally get that, although the reasons I suggested sacc. boulardii are that it's very cheap (you could definitely get it for less than $10) and it seems to act a bit differently to other probiotics. Anyways ... never ends, does it ;-)
So, you don't disagree that this condition may have an infectious cause?
@sarah darwins -- there sure is a lot of good info out there on Sacromyces b.! Trolling through pubmed turned up a lot of information.
It raises intestinal IgA?!
I agree that it certainly could have an infectious cause... and that's my working hypothesis with the data I have right now.
In regards to iron, it's something of a Catch-22. Sure, you don't want to take too much iron or you could end up with bacterial proliferation. At the same time, enough iron is essential to a healthy immune response. My oldest sister (Ed PhD as I call her on here, lol) has similar issues to mine, and had a scary (infective?) flare when she STOPPED taking iron because she forgot her dose two days in a row.
I suppose that could have been a die-off response, but I don't think so. She ran a fever, etc.
Yes, the host should not be weakened, but, if the pathogens can be detected, ( difficult ), then treated, ( same), wouldn't that be nice.
Of course, testing is faulty ; treatments are side-effecty, and non-specific, but there's hope.
I see you've recently tried abx, and had some improvement, but not without side-effects. Same here.
After reading extensively, ( forgetting more so ), Abx seem to only inhibit ( or kill ) certain other microbes ; and microbes are quick to develop resistance. (smarties)
Probiotics aren't all that 'friendly' either. Although symbiotic, they will overtake if allowed. But we need them...
So, abx's can leave some pathogens room to grow, and some probiotics may not be so host beneficial.
Some researchers are combining herbals with abx for synergy with some success.
I don't know for sure, now I'm back to high dose goldenseal tincture because it seems I've left some rascals behind after abx. (e coli ?)
I haven't had the iron anemia that you and your sister have,, but I've been a bleeder for some years. I suspect the acidosis, and possibly excessive nitric oxide/peroxynitrite production due to infections may be causing this.
Goldenseal and other berberine-containing herbs like Oregon Grape Root are where it's at. Seriously, though: they seem to be quite powerful anti-infectives, but I've never had a poor reaction to goldenseal, even when I take it for a week at a go. No weird overgrowth of other bacteria, either. I list it as one of the essential things to have in your cabinet of ME supplements in my blog.
I went looking for berberine's mechanism of action, but it's insane, and apparently multivariable. That leaves out any other compounds in goldenseal that may behave in a different manner, or act synergistically to enhance the antimicrobial action of berberine...
I think we've meandered off-topic, though. Let's start a new thread as necessary, or return to discussing possible hemophila etiologies.
Ehhhh, @Gondwanaland , I'm familiar with that site and so far every single natural product I've looked up increases the risk of bleeding according to them. I'd have to see a study before I agreed that made sense.
When I go to pubmed, I can only find it listed as protective against bleeding risk, particularly intestinal bleeds. But each time I search I come up with cool stuff -- you can apparently use berberine as a marker to study mast cell activity! And it stains...
Officially back on topic.
Updates that relate to this thread:
@sarah darwins - I tried the Sacromyces, half a pill, and it's the first probiotic that does not appear to make me sicker. Thank you!
Apparently, this is a thing:
Pathogenic mechanisms underlying iron deficiency and iron overload: New insights for clinical application
MJ Kotze1, DP van Velden1, SJ van Rensburg2, R Erasmus2
1Department of Pathology and 2Division of Chemical Pathology, National Health Laboratory Services (NHLS) and Faculty of Health Sciences, University of Stellenbosch, Tygerberg, South Africa. e-mail: firstname.lastname@example.org
Stumbled across it while looking for something else. Presumably, if you took a hepcidin test, it would say whether you had this sort of anemia... though as I mentioned, it's likely transitory and based on infective load or upswing in inflammatory cytokines, or both.
Hope this helps someone. If you're bleeding too much, it might be time for an antimicrobial.
Hi @JaimieS. Did you carry on with the S. boulardii? Wondering how you got on.
I love it. <3 First probiotic I've tolerated long-term. I still take half a pill, though I could probably up it by now. That means I'm taking about 125-mg Saccharomyces boulardii per day.
Second: I am now taking Lactobacillus fermentum ME-3, a probiotic that is reputed to produce glutathione once it reaches the gut. The brand is Reg'Activ and the formula is called Detox & Liver Health. It contains Milk thistle extract, selenium, NAC, and L-methionine as well.
The difference is remarkable. I had a tiny skin issue but ON MY FACE, which is not okay. Could've been Candida I suppose, because it's going away since this formula, and I had tried literally everything I could think of and nothing budged it. Also: more energy, better focus, no 3pm slump. (Is it 3pm now? Yes? I'm not in bed!)
First time I took it, all my sinuses felt like they popped individually. Soooo weird.
Pricey: $50 for the pack. I only bought it at all because a nutritionist I trust strongly recommended it. They say 2 pills a day, but I started off with one of course. Now I'm at 2 pills in the morning, 2 in the afternoon and one in the evening. That's still only 300-mg per day of probiotic.
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