Karen: yr gut protocol

Discussion in 'Fibromyalgia Main Forum' started by deliarose, Jul 1, 2008.

  1. deliarose

    deliarose New Member

    Your toxic gut thread got so long.. I couldn't wade thru it.but I would really like to know exactly what supplements Dr Farr has you on for your gut.

    I am looking at my Dr's Data CSA now & here are my results:

    *I have no lactobacillus.
    All other beneficial flora are fine.

    *I have Pseudomonas Aeruginosa - dysbiotic flora

    *Digestion/absorption markers are ok (I suspect that's not the case)

    *Inflammation markers are Ok (I suspect that's not the case)

    *Short Chain FAtty acids
    They're low. Butyrate is esp. problematic.

    PH is 7.1

    It's interesting that several of us have shown no lactobacillus on a CSA. I've been taking probiotics forever too. I seem to recall reading sthg on the yasko forum about it being "used up"?

    I've looked but I can't find that thread now.

    Anyway, appreciate any info.

    [This Message was Edited on 07/02/2008]
  2. deliarose

    deliarose New Member

    I may have this. I present clinically as having the signs acording to Yasko. This may be elevating my Ph and making it look normal when it isn't.

    Clues: Low Threonine on UAA
    High MHPG on a MAP.

    I hope not, but I may need a more sensitive CSA or maybe a parasitology to rule it out.

  3. brainfoggy

    brainfoggy New Member

    I think Karen did hers with a better lab (Genova Diagnostics). I did mine recently with Doctors Data too and my results are pretty much exactly like yours. No beneficial flora, rare yeast, and butyrate problems. I don't think this test is very good compared to others. This new alternative med LLMD doc I'm seeing wanted me to get a metametrics? (I think this is the one) stool because it is the most comprehensive. The one we did isn't very telling, just confirms what we already know. Was supposed to do the metametrics one, but started abx so I missed this opportunity for now, but I will ask him what it entails. Also, will ask what he recommends for the gut.
  4. Slayadragon

    Slayadragon New Member

    I got the MetaMetrix stool test done last summer and found the comments that I wrote about it on the board.

    I know this is overkill, but I'm going to paste it here since I'm not in the mood to edit it down.

    Perhaps it will give someone a better idea of what the test involves (so that they know if they want to spend money on it) or of some alternatives to treat particular issues.

    Dr. G got excited about this test after it found a severe staph infection on one patient from this board (confetti11). Treating that problem appears to have helped her a lot, though she was doing other things too.


    From September 2007:

    I went to my doctor this week and talked about the next phase of my treatment.

    My doctor agreed that while this suggested that my immune system is making progress in attacking viruses, it is doing so with much difficulty. After discussing my digestive issues and looking at the results of a recent test (Metametrix 2100 Gastrointestinal Function Profile), he said his belief was that if we worked on my gut for a while, my immune function in general would improve and that getting rid of the remaining viruses would be easier.

    The Metametrix test is a sensitive stool test using DNA technology. It showed the following:

    * Inflammation (demonstrated by presence of mucus and white blood cells)
    * High levels of various opportunistic bacteria (stuff that's not supposed to be there but not "proven" to do bad things....these were achromobacter/alcaligenes sp., morganella morganii and aeromonas sp.)
    * Somewhat elevated level of helicobacter pylori (I don't have stomach ulcers, but this causes other stuff too)
    * Mild yeast/fungus
    * Problems with Short Chain Fatty Acids (n-Butyrate and butyrate % are low; acetate % is high)
    * Bifidobacter sp. (a probiotic) is low. Lactobacillus sp. (another probiotic) is high, though a high value here probably is okay.
    * Moderate amounts of vegetable fibers (indicating the need to chew food more thoroughly and/or take digestive enzymes)
    * On the "Adiposity Index," it says that firmicutes is high and bacteroidetes is low.

    The last seems to have a relation to obesity and thus is interesting. This is what the Metametrix book says:

    "Research has indicated that obesity has a microbial component that alters caloric yield from ingested food. Treatments for obesity that result in lowering the percentage of Firmicutes may improve weight control.

    "Firmicutes are high in obese individuals. Organisms include bacillales, bacillus, listeria, staphylococcus lactobacillales, enterococcus, lactobacillus, lactococcux, streptococcus clostridia, clostridium, eubacterium mollicutes, mycoplasma, spiroplasma.

    "Bacteriodetes are low in obese individuals. Bacteroidetes were found to increase in obese individuals who lost weight. The increase was significantly correlated to weight loss but not total caloric intake. Organisms include bacteroidetes, b. acidifaciens, b. distasonis, b. gracilis, flavobacteria, sphingobacteria."

    It's nice to think that by working on the gut, obesity problems might start to resolve themselves. I've gained about 10 pounds over the past year, which has put me to the area where I'm not crazy about my weight. Of course, if I started to feel better I would be more active and thus negate the controlled experiment of whether this might actually help me get thinner. Extra motivation to work on the gut likely is a good thing anyway though, considering how many folks (isn't Kenny de Meirleir one of them?) these days seem to be emphasizing that immunity begins in the gut.

    For what it's worth, my Ph was right on the money. A number of other tests also were done, but I am not listing them here because they do not seem to have shown problems for me.

    The test included listings whether the opportunistic bacteria and yeast would be sensitive to various drugs. It also tested for berberine and for caprylic acid. My having taken lots of goldenseal over the years may be catching up with me since bacteria were resistant to the berberine. The bacteria and yeast both were sensitive to caprylic though.

    The test did not show parasites, but my doctor said that my response to the parasite herbs suggested that they were a problem and that I therefore should keep taking the herbs.

    We discussed the apparent ammonia issues that I'd been having with the methylation. He agreed that it sounded like ammonia and that we should address it.

    My doctor thinks that working on my gut problems for two months should get things back into shape. In the meantime, I will continue to take only as much of the folate/B12 as does not give me any substantial die-off/detox/stress effects.

    This is the list of things that I am going to try, adding one at a time.

    * Increase probiotics (18-strain, 64 billion units per capsule) to three per day. This is a huge amount of probiotic (note that most health store probiotics contain about 1.5 billion units of one strain per capsule).

    * For GI Healing: DGL (deglycyrrhizinated licorice), l-glutamine and aloe vera. The l-glutamine helps with the ammonia also. The product he recommended is called Glutagenics (by Metagenics), but the high amount of l-glutamine (3500 mg per teaspoon) made me fear it would tilt the glutamate/GABA ratio too high. I thus am going to take l-glutamine as tolerated, aloe vera (powdered and/or gel....this is _not_ the leaf/latex used for constipation), and licorice. My blood pressure is moving up toward normal levels (maybe due to the methylation?), but I think that I could still tolerate regular licorice if I stop the Florinef (which I would prefer to stop since it's a drug). I will move to the DGL (which just helps the digestive tract without adrenal stimulation) if necessary.

    * For GI Healing: Cromalyn. This is a natural anti-inflammatory available through compounding pharmacies. I have yet to research it.

    * For Inflammation: Fish oil, 6 grams daily. (This is a little more than 1 teaspoon.)

    * For Oppotunistic Bacteria: Doxycycline, 100 mg. Start 2x per week, the next week 3x per week, etc., making sure that die-off is not noticable. Within 4-6 weeks, should get to being able to take it daily and starting to feel better. Continue for another 1-2 weeks, then stop. May be pulsed later. (Obviously these are pretty open directions. I have been on almost no antibiotics since getting sick, and so hopefully I will respond quickly to this one.) My doctor says that this is targeted enough that it should not interfere with the work of the probiotic (or perhaps he meant not his 18-strain one). Cipro (another possibility that I could take) has a much wider range of action and thus would be more likely to cause yeast problems, he said.

    * For Bacteria, Yeast and Viruses: Caprylic Acid and/or Coconut Oil, to be taken into the foreseeable future. (I will continue to take oregano oil if it "feels right" but skip the goldenseal for the time being.)

    * For H. pylori: Mastic by Allergy Research, 2 daily in 2 weeks. (I am allergic to the cellulose filler in this brand and so may order another one.)

    * For Ammonia: Questram, 1 tsp. at night. This is an anti-cholesterol drug that should bind up the ammonia, but without eating up prescription drugs. My doctor first recommended activated charcoal, but then prescribed this when I mentioned that I was afraid that the Lamictal and Xanax/Klonopin I take could be absorbed by the charcoal. (The pharmacist confirmed that this drug should not interfere with the benzos or Lamictal.) This drug may help general toxicity too, since he told me to take it just before the time when my body seemed to release the most toxins (for instance, just before bedtime if I felt the most toxic in the morning). I'm not sure when I feel the most toxic and will have to monitor that a bit.

    * For Ammonia: Lactulose. I have been taking this since early August for constipation. It's been great, but I was slightly worried the sugar might be feeding bacteria. He said that was not a concern, and that it actually should help with ammonia. I don't know if it's been doing that so far, but it's certainly possible my ammonia issue could be even worse than it has if I weren't on this stuff.

    * For Vitamin D: I brought up the fact that I had never had testing for Vitamin D, never supplemented, and tried to stay out of the sun. He said I should take at least 5000 u daily, then wrote down "D3 5000, 2 daily." I don't know much about Vitamin D and so am going to try to read more.

    As with last time, he commented that at least 2 and preferably 3 bowel movements should occur each day. He said that this should happen spontaneously as my gut healed, and (as always) emphasized the importance of taking as much Vitamin C as my gut can handle without getting diarrhea. This has been 15 g, but perhaps I will see if I can go even a little bit higher without getting diarrhea. Right now I'm getting one movement (sometimes two), apparently perfectly normal....certainly a step in the right direction for me.

    I mentioned my lung problems and brought up the possible issue of chlamydia pneumoniae. He just said that the doxy and other things should help with this, directly and indirectly. From everything I've read, treating cpn aggressively seems like a difficult and ultimately losing battle, so just getting it under control so it doesn't bother me seems a good strategy.

    I didn't discuss the RNA products, but will continue to take the RNA Bowel since I have it on hand. (It is exhausting, but perhaps that means that it's helping me.) I also may try the cumanda that I ordered just to see what happens with it.


    Back to Summer 2008:

    Now that I look back on this, I am amazed at how many of these things ended up causing me unexpectedly large die-off and detox reactions.

    L-glutamine is fine for gut healing and ammonia control. Great for ammonia, actually. Unfortunately, Yasko was right in terms of it pushing my brain into hyperactive weird mode (glutamate/GABA balance). The one time I took it (along with the methylation support), I had to take some Klonopin right afterwards to balance it out. My ammonia problem seems to have diminished over time, perhaps because of having killed bacteria and/or taking manganese. I wonder if it’s still an issue though.

    One capsule of doxycyline (100 mg) gave me by far the worst herx of my life. That is a very bad way to feel bad! (Detox symptoms usually feel like a good way to feel bad, even when they’re hard.) Lyme and/or chlamydia pneumoniae, apparently.

    Questram (cholestyramine) works on detoxifying biotoxins (lyme and mold) and other toxins. I actually took a teaspoon of this on the same day as the doxy and wonder if it intensified that herx. (The doxy had an effect even without the Questram, but it could have been exacerbated.)

    My strong belief now is that fish oil in combination with cholestyramine gives me the nastiest detox of all time. My brain seems literally to swell, and the detox symptoms afterwards are fierce. I have theories about why that might be but no firm answers yet.

    On the other hand, Lactulose always worked fine for me. I had forgotten about its helping ammonia until I read this post. Perhaps I will give it a try to see if it makes me feel better, as a casual test with regard to whether ammonia might be a factor for me.

    I didn’t take much cromalyn, and then I abandoned the bottle when I left my house. It’s an interesting though.

    I never felt like licorice of any sort has helped me, but maybe there was some small benefit.

    I do think that aloe vera juice was very good for my intestines.

    I took a lot of coconut oil and caprylic last fall but am not sure what it did. I’ve been afraid to take any Lauricidin but may try it eventually. Coconut oil has done wonders in terms of clearing up any kinds of skin issues (especially when I was taking antivirals), and upon reflection I wonder if it might do something similar in the “skin” of the gut. Hmm.

    Dr. G’s compounded probiotics continue to be great. It takes care of yeast problems and perhaps forces out some of the bad bacteria as well.

    I seem to do well on occasional treatments for “regular” intestinal parasites, using a typical Western herbal combination (wormwood, clove, black walnut husks, grapefruit seed extract, etc.). I used that on my own, but Dr. G thought it was fine that I had.

    Anyway, it's sort of spooky how many things that came up in this appointment ended up having huge die-off or detox effects on me. Dr. G told me at our last appointment that he's learned to be really careful with me because I overreact to certain things. (Not everything, just some things.) I think he was groping in the right direction here, but it did turn out to be a really intense list!

    [This Message was Edited on 07/01/2008]
  5. Catseye

    Catseye Member

    thanks, dragon, for all the explanations!

    I was taking enzymes for the inflammation; before I started anything else he said that was important to do first. Bromelain and something called Beta TCP. Then I got on some detoxification supplements which were the same enzymes, an emulsified form of oil of oregano to kill pathogens, some EFAs, whey protein, a multi vitamin and mineral powder and some other supplements with herbs for liver and kidney function, but no probiotics yet. I will be starting those in another week. And now, since I've found out from a reliable test (unlike my previous unreliable test that was negative) that I have lyme, I've started a couple more things. They are all very specific to my situation.

    About the nonexistent lactobacillus, Dr. Farr compared it to a hotel full of bad guys. There's only so much space for bacteria, and it's already taken up by the bad guys. And when they are overpopulated, they are in charge. I had asked him if you couldn't just take a handful of probiotics and just repopulate them all at once. And the answer was no. Plus the bad guys eat the good guys so all we did was sacrifice the poor lactobacillus we were taking. Isn't that sad!

    The low short chain fatty acids he said means I needed more enzymes. Too high means bacterial overgrowth. The SCFAs are end products of anaerobic microbial fermentation of dietary fiber. Levels reflect the concentration of intestinal flora as well as soluble fiber in the diet. They are a source of fuel for the cells and regulate fluid balance in the colon. N-Butyrate is the most beneficial, serving as the primary energy source for the colonic epithelial cells. Adequate amounts are necessary for the healthy metabolism of the colonic mucosa and have been shown to be protective of colorectal cancers. Dr. Farr did mention this was a cancer marker. You definitely don't want it low.

    If you're having cfs symptoms, then I would be curious, too, about the digestion and inflammation markers. I think those are problematic for most of us.

    Probably the most important things I'm on is the betaine hcl (up to three or four 700 mg pills per meal now) and the enzymes. And the diet, of course, is crucial. We have to starve out the bad guys by severely restricting the types of carbs we're eating. I only eat chicken, some beef and fish, eggs, veggies and raw nuts and seeds. That's it! And it's working. I'm not getting exhausted anymore. And this is after about 3 months on this diet and supps.

    I've asked the doc about me posting my exact supps and he said it isn't a good idea because people will run out and try them but no two people are exactly alike in what they need. My supp schedule was tailor made to fit my gut and it's such a complex system, there are no real generalities. But I can think of 3 that fit most of us: the enzymes, betaine hcl and the diet.
  6. Catseye

    Catseye Member

    I really miss fruit and am looking forward to when I can have it again. I guess it all depends on when my testing clears me for adding carbs into my diet once again. I probably have at least 3 months to go, maybe more. It's no wonder hardly anybody wants to do this. I'll definitely be restricting carbs somewhat for the rest of my life, though. I mean compared to how I used to eat. I ate whatever I wanted, whenever I wanted it. That's totally over. I'll never have regular ice cream or cereal and milk again, things like that.

    I've never heard of the ciguatera epitope neurotoxin. The things you learn about when you have cfs/fibro!