Re: Bob: FODMAP hypothesis

[Guest guest]

This is great detective work, Matt. I also think you're onto something associating the back pain, infection causing increased nerve sensitivity, and the slowed down peristalsis. This is something I can definitely relate to when I suffered with back pain for 3 years around 20 years ago. I was eventually dx'd with a herniated disc, but what I learned in the meantime was that I had to keep my bowells functioning really well to avoid really bad back episodes. Back then, constipation was a continuous problem for me (interspersed with severe bouts of IBS). I eventually realized that constipation was linked to unbearable back pain. Of course, my doc said there just wasn't any physiological connection between my bowells and my disc, but I knew for sure that if I was vigilent about preventing constipation, my back pain was reduced greatly. The thing that

eventually reversed my herniated disc was traction, both the machine kind and gravity traction. Eventually my back recovered to the point I didn't worry about it any more, but it used to be a huge worry for me all the time. penny phagelod <mpalmer@...> wrote: BobIf 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/2eu72rIt 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/28x8jdSIBO 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>

[Guest guest]

Matt,

I've looked into it but not this far. I'll have to catch up on this.

"Leaky gut syndrome" and "damaged blood-brain barrier" has been a

drumbeat of several of her doctors in recent years, and more recently,

her peristalsis has been terrible. This looks like a fresh angle that

speaks to all these things. Thanks very much for pointing me at it.

Although I don't think my wife has eaten anything describable as a

"modern" diet in some time.

She already eats a 110% organic diet that is extremely limited due to

food sensitivities -- at one point literally there were only a half

dozen things she cold tolerate, though it has improved some now. She

benefits greatly from raw milk, and home-made kefir from same, and

takes about three different probiotics. I wonder about whether one can

simplistically overwhelm undesirable gut flora with desirable species,

but clinically this aggressive "colonizing" strategy seems to be very

helpful.

By the way I probably shouldn't mention it here but FWIW Yasko does

talk a lot about ammonia toxicity and its relationship to certain

organisms and to defects in the methylation cycle. It's too bad her

protocols are so baroque and difficult both to comprehend, and in

practice, really, to implement. In the end I think part of whatever

success people have with her methods is that in their attempts to

follow them, they just eat a better diet. That observation intersects

nicely with your "ammonia intoxication" theory AND the whole SIBO /

FODMAP thing you're talking about.

--Bob

phagelod wrote:

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

>

[Guest guest]

Bob, there's no reason you shouldn't talk about Yasko here. I'm actually interested in hearing what people have to say. I'm just not interested in spending a lot of my own time pursuing yet another convoluted supplement program if there's zero emphasis on understanding the organisms equally as well. But I'm always open to hear what other people are saying, as I'm sure others are as well (except maybe for Tony). :-) penny Bob Grommes <bob@...> wrote: Matt,I've looked into it but not this far. I'll have to catch up on this. "Leaky gut syndrome" and "damaged blood-brain barrier" has been a drumbeat of several of her doctors in recent years, and more recently, her peristalsis has been terrible. This looks like a fresh angle that speaks to all these things. Thanks very much for pointing me at it. Although I don't think my wife has eaten anything describable as a "modern" diet in some time.She already eats a 110% organic diet that is extremely limited due to food sensitivities -- at one point literally there were only a half dozen things she cold tolerate, though it has improved some now. She benefits greatly from raw milk, and home-made kefir from same, and takes about three different probiotics. I wonder about whether one can simplistically overwhelm undesirable gut flora with desirable species, but

clinically this aggressive "colonizing" strategy seems to be very helpful.By the way I probably shouldn't mention it here but FWIW Yasko does talk a lot about ammonia toxicity and its relationship to certain organisms and to defects in the methylation cycle. It's too bad her protocols are so baroque and difficult both to comprehend, and in practice, really, to implement. In the end I think part of whatever success people have with her methods is that in their attempts to follow them, they just eat a better diet. That observation intersects nicely with your "ammonia intoxication" theory AND the whole SIBO / FODMAP thing you're talking about.--Bobphagelod wrote: BobIf 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/2eu72rIt 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/28x8jdSIBO 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>

[Guest guest]

Bob

As you know, " leaky gut syndrome " is wrapped up in theories about

candida. I haven't found much on PubMed to support this, though I

haven't ruled out the possibility that yeast can do this. SIBO is

about bacteria and there's loads on PubMed to back it up.

Although " leaky gut " and " intestinal permeability " refer, on their

face, to the same thing, one implies candida, the other implies

commensal bacteria.

If milk and probiotics help her, that's great. But SIBO is not

about pathogenic bacteria, it's about commensals that overgrow where

they ought not to overgrow. My understanding is that many adults

don't break down lactose well even if they don't have obvious

lactose intolerance. I avoid milk. I eat lots of cheese though.

I'm assuming that the culture used to make cheese breaks down the

lactose, but I could be wrong. What is in raw milk that helps her?

I think there is an enzyme you can buy OTC (lactase, maybe) that you

can put in milk to break down the lactose, if you wanted to

eliminate lactose as a potentially harmful FODMAP.

The FODMAP hypothesis also lists some natural foods that are high in

FODMAPs--a lot of fruits, legumes, wheat, (raw?) potatoes, etc.

Since I was consuming mass quantities of high fructose corn syrup,

eliminating the unnatural sources of FODMAPs was my priority.

I used wheat bran for a while to improve peristalsis. Other fibers

tend to be highly fermentable, like oat bran. The FODMAP authors

highlight wheat bran and I did a lot of background checking on

this. I think they're correct to promote this fiber exclusively.

Matt

>

> Matt,

>

> I've looked into it but not this far. I'll have to catch up on

this.

> " Leaky gut syndrome " and " damaged blood-brain barrier " has been a

> drumbeat of several of her doctors in recent years, and more

recently,

> her peristalsis has been terrible. This looks like a fresh angle

that

> speaks to all these things. Thanks very much for pointing me at

it.

> Although I don't think my wife has eaten anything describable as a

> " modern " diet in some time.

>

> She already eats a 110% organic diet that is extremely limited due

to

> food sensitivities -- at one point literally there were only a

half

> dozen things she cold tolerate, though it has improved some now.

She

> benefits greatly from raw milk, and home-made kefir from same, and

takes

> about three different probiotics. I wonder about whether one can

> simplistically overwhelm undesirable gut flora with desirable

species,

> but clinically this aggressive " colonizing " strategy seems to be

very

> helpful.

>

> By the way I probably shouldn't mention it here but FWIW Yasko

does talk

> a lot about ammonia toxicity and its relationship to certain

organisms

> and to defects in the methylation cycle. It's too bad her

protocols are

> so baroque and difficult both to comprehend, and in practice,

really, to

> implement. In the end I think part of whatever success people

have with

> her methods is that in their attempts to follow them, they just

eat a

> better diet. That observation intersects nicely with

your " ammonia

> intoxication " theory AND the whole SIBO / FODMAP thing you're

talking about.

>

>

[Guest guest]

Yasko does urge people to identify strep and clostridia in the gut,

and she has protocols to address it. People then test again (stool)

to see if they still have the infections. I haven't gotten involved

in any of this yet so can't comment. My son did have high strep

antibodies though, so I might look into it. I think that's what it

was anyway -- he had another test that supposedly indicated no active

strep though. Neither of these tests was the stool test.

- Kate

On Jun 11, 2007, at 12:19 PM, Penny Houle wrote:

> Bob, there's no reason you shouldn't talk about Yasko here. I'm

> actually interested in hearing what people have to say. I'm just

> not interested in spending a lot of my own time pursuing yet

> another convoluted supplement program if there's zero emphasis on

> understanding the organisms equally as well. But I'm always open to

> hear what other people are saying, as I'm sure others are as well

> (except maybe for Tony). :-)

>

> penny

[Guest guest]

Pasteurization and homogenization change milk in ways that make it much

more allergenic. The type of cow matters too (legacy breeds, e.g.,

Guernsey, Jersey produce a "safer" subtype of casein than "factory"

breeds, e.g., Holstein). We hear from many sources, including my

wife's doctor, that people with whom milk normally disagrees, have

fewer or no problems with raw milk. Our own experience seems to bear

that out.

Raw milk is produced under more sanitary conditions, rendering

pasteurization unnecessary. Or looking at it the other way,

mass-produced milk is processed in relatively unsanitary conditions,

which requires some form of pasteurization to compensate for it.

We gladly pay $10 a gallon for the stuff, and make a special trip into

town every Tuesday to a distribution point to obtain it. For my wife

it's about the only "fun food" left to her. In my case, well, I'm just

a milk lover. Always have been.

It tastes about the same as any organic milk, and keeps better (it

becomes sour rather than rancid, if you keep it around for a couple of

weeks, but you really have to work at it).

As always, your mileage (and your supplier) may vary.

--Bob

phagelod wrote:

What is in raw milk that helps her?

I think there is an enzyme you can buy OTC (lactase, maybe) that you

can put in milk to break down the lactose, if you wanted to

eliminate lactose as a potentially harmful FODMAP.