Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Bob If you haven't already, you should look into small intestinal bacterial overgrowth, bacterial translocation and the FODMAP hypothesis. I'd come up with a theory that low grade ammonia intoxication could happen in the absence of liver failure if the blood brain barrier was compromised. So I tried lactitol (an OTC version of lactulose) thinking I might feel 10 to 20% better. Within 4 to 6 hours of a standard dose I was being brutalized. A mild fever was quite informative. I asked for clues and he cited this beauty: http://tinyurl.com/2eu72r It basically says that the modern diet now includes compounds that we can't absorb but that bacteria can ferment. The main ones seem to be high fructose corn syrup, guar gum, gum arabic and sorbitol. Consuming these compounds feeds the commensal bacteria in your gut. You're supposed to have relatively low numbers of bacteria in your small intestines. But feeding them can lead to " small intestinal bacterial overgrowth (SIBO) " and " bacterial translocation " (that is the overgrown bacteria can compromise the integrity of the small intestinal lining and then translocate into the tissues/blood. I suspect that this is why Garth Nicolson found mycoplasma in the blood of PWCs when he looked for it). It seems pretty clear that this explains why lactitol had such a bad effect on me. I suspect that I have intracranial hypertension and that the resulting activation of sympathetic nerves slows peristalsis and that this helps promote the SIBO. I also had C diff which was doing serious damage to my intestines, and which resolved with treatment. So I can't be sure how much credit to give the FODMAP dietary changes versus the C diff treatment, but collectively they have eliminated overt GI problems. I'm going on a year now. The two times I've had obvious gurgling were when I consumed lots of corn syrup. The " die-off " that your wife, and others describe may not be a die off of pathogens, but of commensals that are overgrown in the small intestine because of FODMAPs and/or slow peristalsis. If true, then you can plan on endless " herxing " if you pulse abx since the commensals grow rapidly and replenish between pulses, IMO. The obvious solution is to avoid FODMAPs. I even avoid juice due to the fructose, though I occasionally drink some after adding a tablespoon of dextrose (i.e., glucose) since the fructose isn't so much a problem if it is matched on a molar basis by glucose (fructose undergoes glucose-dependent transport, hence the problem with high fructose corn syrup unmatched by glucose. Sucrose is not a problem because it is one part fructose, one part glucose). Note that " Endogenous lipopolysaccharide (LPS) is continually absorbed from the gut into intestinal capillaries, and low-grade portal venous endotoxemia is the status quo " . Quoted from: http://tinyurl.com/28x8jd SIBO should aggravate this greatly and it looks like the liver would be hit hardest. Given your wife's constraints, restricting dietary FODMAPs is something that shoud be safe and possibly a bit effective. Unfortunately, I didn't experience a relief of the fatigue and such that was aggravated by the lactitol (a FODMAP) but it does seem to have helped eliminate my GI problems. As for Ceftin, my wife was give a single, large dose of Omnicef when she had stitches. She had major GI problems for months afterwards and then went to the ER for what turned out to be a gall stone. She's had intolerance to food for many years that now makes sense in light of gall bladder problems and I think the Omnicef aggravated it badly. Ceftin and Omnicef are related to Rocephin which is notoriously hard on the gall bladder. I couldn't find any definitive statements on Omnicef to match those of rocephin, but it seems too coincidental. Matt > > She can't tolerate Zithro at all. Strangely, aside from a massive > cytokine storm, the symptoms are what we associate with mobilization of > mercury: dark depression and emotional lability, which in her case are > particularly striking because that is so contrary to her fundamental nature. > > Tried mino once, tore her stomach up right away and took months to > recover. These kinds of atypical responses make abx really challenging. > > Biaxin brings about promising clinical results but is hard on the > stomach; even so she managed a three week course which for her is a huge > accomplishment. And then the doctor tried adding Ceftin. > > Ceftin has been tolerated fine in the past by itself, though it didn't > produce clinical results one way or the other. But combined with > Biaxin, Ceftin produced an immediate heavy die off of something. The > toxins overwhelmed her liver, liver enzymes went through the roof, and > coincidentally or not, she threw a gall stone (completely new problem -- > whoopee). > > At this point one of her doctors is convinced the gall bladder needs to > go, that it's a locus of infection and in any case should be removed > while it's elective, not wait until it's a crisis. He wants to > stabilize her for a couple of months and then do the laproscopic > procedure to take it out. The other doctor is more conservative and > doesn't recommend attempting surgery unless she has another attack. He > puts the odds of such an attack at 20%. > > Unless she has another attack, we are going to move heaven and earth to > avoid the knife because with the severe MCS, the combination of a > hospital stay and anesthesia could well run her into the ground, if not > do her in altogether. For now, she is just starting the Biaxin again by > itself. > > --Bob > Quote Link to comment Share on other sites More sharing options...
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