Mystery unfolding and going with nuclear protocol!

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Post by Polly »

I guess the main issue is this: is it worth wiping out all of your hard-eamed good gut bacteria to test a theory? And also Tex' point - do you want to risk developing resistance to this potentially life-saving antibiotic, again to test a theory?

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Zizzle
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Post by Zizzle »

I'm still on the fence. Reading about people with C.diff gives me pause. Surely I have some good (or bad) bacteria that are keeping my clostridia levels under some degree of control. Otherwise I'd be MUCH sicker! I'm seeing a new doctor in the practice on Tuesday and will discuss my options with her then. I can't see my original prescribing doctor, because now that he wrote a book, he just switched to a membership model requiring $3,500 per year to be his patient. No thanks, I'm not that sick.

I still want to go after the Candida with Nystatin pills, but I worry that taking Nystatin "unopposed" is what may be causing me trouble. Should I just load up on the probiotics I know I can handle, like Culturelle? Maybe start drinking water kefir again (even though its part yeasts?). Or take "natural" antibiotics like oregano oil or olive leaf extract?

To be continued...
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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Zizzle
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Post by Zizzle »

BTW, with all this talk of bacteria, my husband now thinks I "gave him something" that resulted in him becoming gluten intolerant. Possible? Of course his mother has ME, is gluten intolerant, and her whole family has every gluten-related disease in the book. I certainly didn't share my germs with her.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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brookevale
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Post by brookevale »

I just ordered a book for my Kindle called, "Missing Microbes: How the Overuse of Antibiotics is Fueling Our Modern Plagues". I am only on Chapter 2 but so far it is very interesting. The author is Martin J. Blaser, MD. He is the director of the Human Microbiome Program at NYU. You can take a peek at some of the contents on Amazon.
Strongly believe I have a form of MC that began to flare December 27, 2013.
44 year old married mom to three sons ages 26, 17, and 2, a 21 year old stepdaughter, and 18 year old stepson. I also have a beautiful granddaughter who is one.
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Zizzle
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Post by Zizzle »

The question is, are we missing microbes, and are we actually low on them, or rather do we have more virulent disease-causing microbes taking over in our GI tracts?
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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tex
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Post by tex »

Zizzle wrote:The question is, are we missing microbes, and are we actually low on them, or rather do we have more virulent disease-causing microbes taking over in our GI tracts?
Well, if certain population levels are missing, then they will almost certainly be replaced by some other strain (already established), but this can also open the door to the introduction/establishment of "new" opportunistic bacteria. And here's the bad news — in general, antibiotics are very good at destroying populations of so-called "good" bacteria, and typically rather weak at destroying populations of pathogenic bacteria. That implies that if any populations are likely to be completely eradicated (exterminated permanently), the lost strains are much more likely to be from the so-called "good" or "benign" category, than from the pathogenic category.

By applying a well-known engineering concept to this medical issue, we can understand how this medical process can be defined by a theory of mine (here I go again :roll: ). The theory can be defined as an effect that leads to a loss of robustness in gut flora and fauna that is very similar to the concept of the loss of entropy so well known to engineers. Entropy is a measure of the unavailability (wasted) energy that occurs with every process that involves a change of state. The second law of thermodynamics says that the entropy of an isolated system can never decrease (thereby implying that entropy is always either constant or increasing). IOW, every complex thermodynamic process results in a net loss of energy (or energy that becomes unavailable to do work) that can actually be mathematically defined, and this quantity is known as an increase in entropy. To understand entropy, we have to understand that certain processes are irreversible. Even though theory might suggest that they are reversible (with a perfect conversion/recapture of energy), in the real world, all processes are irreversible. An irreversible process increases the entropy of the universe. Reversibility is impossible because that would imply a loss in entropy, which would violate the second law of thermodynamics.

So every time the bacteria populations of the human gut are modified by the use of antibiotics, the process is irreversible, and it results in a net loss of "energy" to an increase in entropy (that can never be regained). For lack of a better term, let's just call it antibiotic-induced entropy. Whatever we choose to call it, the process results in a loss of robustness (which in essence is a form of potential energy), as far as the integrity of our gut bacteria is concerned. The net result is that each time we go through the cycle, we lose a little more robustness in our gut bacteria populations, that can never be regained (remember that entropy always increases; it never decreases).

To carry that thought a step further, consider that medical researchers don't have the foggiest idea which gut bacteria strains should actually populate our gut, because for several generations now, none of us have been spared antibiotic treatment. Prior to the development of antibiotics, the technology for classifying/understanding gut bacteria populations was so rudimentary that the information was never available, and consequently today, we actually don't know what the gut bacteria demographics should be for someone eating a "so-called" western diet. The demographic profile that is claimed to be representative is hardly an honest and accurate result, because it has been modified at numerous points during our lifetimes by the use of antibiotics.

For all we know, some essential bacteria species (essential in the sense that during evolution they were very efficient at preventing certain other bacteria from creating environments that predispose us to various autoimmune issues or other diseases) have been totally exterminated, since the advent of the use of antibiotics. Or looking at it from another perspective, perhaps there are certain species that only exist in tiny populations (therefore they have been completely overlooked by researchers), yet they have such unique characteristics that they are the key to health, if/when certain other bacteria are present in established populations. But before those unique populations have a chance to become well established, we smack 'em down with antibiotics, and they are never able to recover (in part, due to the loss of entropy). And there is no way that we can even be aware of this, because we don't even know that they exist (yet), or that they ever existed.

As you are well aware, IMO there is no such thing as a "good" bacteria, and we would be much better off without any of the little freeloaders in our guts, but my point is that if we are going to have to live with any of them in our gut, then we are stacking the cards against our long-term health by selectively exterminating antibiotic-susceptible strains that evolved to keep pathogenic strains in check, thus allowing the more aggressive (and more robust) pathogenic strains to repopulate our gut. The net result is permanently skewed gut bacteria population demographics. And every time we go through the process, we almost surely cripple our gut bacteria demographics a little more, due to the increase in antibiotic-induced entropy.

Hopefully other engineers on this board will either repudiate, elucidate, substantiate, validate, or otherwise offer their opinion on the appropriateness (or lack thereof) of my invocation of the concept of entropy into the medical process of modifying gut bacteria populations by the use of antibiotics.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
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Post by Gabes-Apg »

My research this far, and collaboration with my knowledgeable naturopath, acupuncturist and now nutritionist,;

work with what is there, try to encourage the good to increase
Heal the leaky gut first, then use supps and diet to minimise inflammation
Have teeth and gums as healthy as possible
use gradual process rather than massive nuclear explosion treatments
Be patient, give the gut time to operate as it should be
Use 'natural' based treatments, food, mineral, herb derived, ideally single to low ingredient type products (so if there is an issue we can pinpoint troublemaker)
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Post by nerdhume »

"The gut flora as a forgotten organ"
Host–microbe interactions occur primarily along mucosal surfaces, and one of the largest interfaces is the human intestinal mucosa. The intestine is adapted to bi-directional host–flora exchange and harbours a diverse bacterial community that is separated from the internal milieu by only a single layer of epithelial cells. Resident bacteria outnumber human somatic and germ cells tenfold and represent a combined microbial genome well in excess of the human genome (Shanahan, 2002). Collectively, the flora has a metabolic activity equal to a virtual organ within an organ (Bocci, 1992).
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1500832/

So apparently all the gut flora operates together almost like another organ.
Theresa

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gluten
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Post by gluten »

Hi Zizzle, I researched oregano oil and found that it eliminates bacterias that need oxygen. It covers the bacteria and without oxygen it is eliminated. It will remove both the good and bad oxygen sensitive bacterias. Oregano oil is the strongest of the oils. Jon
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Post by brookevale »

I am so desperate to rid myself of this female issue that I bought Ultimate Flora Vaginal Care to "repopulate" my hoo-ha with good bacteria and fight candida. Ok, sorry for the TMI. After all, we are the Potty People. Since starting it a few days ago I have mega mucus in my normans (normans are thanks to the Entocort I started a month ago). I feel like I am detoxing every day too as I'm finally sticking to a very restricted diet of meats and veggies. Some say probiotics are just as good as sugar pills. Others say they are the answer to everything. I am so confused. All I know is that I couldn't tolerate a single probiotic capsule during my flare. Since there are no real good tests for candida or SIBO, I have just assumed I have those as well as the inflammation.

All I do know is that I never want to take another antibiotic as long as I live. That is what started this entire mess. No thank you. However, if I knew beyond a shadow of a doubt I had full blown c diff, you bet I'll be taking some vancomycin and scrubbing the entire house with bleach. I had it September 2012 and never want to ever have that awful condition again. C diff spores can only be killed with bleach and one little spore can re-infect you over and over. I can confidently say my house is free of c diff after that. :grin:
Strongly believe I have a form of MC that began to flare December 27, 2013.
44 year old married mom to three sons ages 26, 17, and 2, a 21 year old stepdaughter, and 18 year old stepson. I also have a beautiful granddaughter who is one.
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Post by nerdhume »

brookevale
It is my understanding that most of us have c.diff in our intestines. It becomes a problem because antibiotics kill off the good bacteria that keep it in check. IMO a good probiotic should be able to control the c.diff and the candida. There is an enormous difference between probiotics. The best ones are kept refrigerated, the ones on the shelf may have been there too long and be out of date. Also, depending on your diet you may need to have prebiotics so the good bacteria have something to sustain them. I brew my own water kefir to drink and believe that has really helped me.
Theresa

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in remission since June 1, 2014

We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
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Zizzle
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Post by Zizzle »

You may recall I had amazing success while drinking water kefir. I was in total MC remission for months. I stopped more than a month ago and all the MC symptoms are back, despite still being on the same restrictive diet. Time to wake up my kefir grains...

Although...the urine test that showed bacteria and yeast overgrowth was done while I was still drinking WK, albeit not the day before. I wondered whether the WK could skew the results.
1987 Mononucleosis (EBV)
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2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
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Zizzle
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Post by Zizzle »

A little update now that I had a visit with my new integrative medicine doctor:

I happened to have my appointment on a sick day after dealing with 3 days of runny nose, constant headache, D, and stomach pain. By the time I saw her, I was doubled over with stabbing left upper quadrant pain. To me it felt like an ulcer in the left wall of my stomach. She said there was a stomach flu going around with similar symptoms, but she gave me a script for an ultrasound, because she thought it might be my spleen! Luckily the pain and headache started to resolve the next day. Not a fun 4 days!! My BP was 90/40, 104/58 lying down, and I was symptomatic (woozy, fatigued). Having D is not good for my BP!!

We talked about the severe D resulting from 4 days of Nystatin, and she said that's how some people react to the die-off, and it should improve over time. I later read the inactive ingredients and realized it contains corn starch, one of my suspected triggers. Of course my prednisone and plaquenil probably contain corn starch too, and I tolerate them just fine, so who knows. The pills contain talc and other crap, and the liquid is even worse. Ugh.

We also talked about how I reacted violently to their multi-strain probiotic, but not to water kefir or Culturelle. So she said I should dust off the water kefir grains, drink it for several days, then re-start the Nystatin. Before I start, I'll be mailing away a home test for SIBO to Genova Diagnostics. It's the ideal time, since I've been off all probiotics, Nystatin, and Pepto for several weeks. My first and only SIBO test was in 2009 and the result was equivocal. I'm guessing I'll be positive now. Depending on the result, we'll decide whether to pursue antibiotics.

Despite all these GI issues, my skin is doing great thanks to LDN. My sun sensitivity is calming down, and the itching and almost all of the redness is gone. I'm amazed! I'm down to 6 mgs prednisone with no noticeable symptoms after the last 1.5 mg drop. Yay!!

My new doc is family medicine trained, so she offered to see my daughter too. Now that I'm feeling better, it's time to concentrate on her "post-infectious IBS-D" before she ends up like mom!
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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Gabes-Apg
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Post by Gabes-Apg »

What type of SIBO test are you doing?

Glucose? Fructose? Lactulose?
Gabes Ryan

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Zizzle
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Post by Zizzle »

Lactulose.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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