XMRV or Coxsackie Bs the cause of intestinal inflammation??

Hello Suzy and Klutzo,

It is all so complicated and I'm so sorry to hear what a bad time you have had.

Just a few extra facts in answer to your comments.....

My digestive enzymes were enteric coated and I did take HCL. Klutzo: I am blood group A as well, but didn't know that correlated with low stomach acid. Thanks for that info.

When I said I found a modified Atkin's diet of help I meant a very modified Atkin's because I can't digest red meat. I also eliminate grains, sugar, root veggies and processed food.

Klutzo: Thanks for the info about sympathetic overactivity and the digestive problems. I'm just beginning to follow up the information from the autistism sites. Very, very interesting. I have much to learn.

Just throwing out a question here......how many of us have Gilbert's disease, a so-called benign condition of the liver? I remember ( I like saying that ....I remember .... it's such a rare event) Dr Charles Shepherd saying years ago that 16% of folk with M.E. have Gilberts). Some claim that it can produce the symptoms of M.E. - even including the alcohol intolerance thst is typical of this condition, especially in the early years. Anyone any information on this? (I'm probably asking this on the wrong thread...sorry.)

Gilbert's Disease and sugar

HI Countrygirl,
I have never heard of Gilbert's Disease. It's a new one on me and I will have to Google it, thank you. I definitely have the alcohol intolerance though.

I just want to applaud you for avoiding sugar. That takes incredible discipline, at least for me .Not one grain of sugar passed my lips for two whole years, but I never felt any better for it, so I went back to allowing myself one sweet thing per day, since I have an awful sweet tooth. For years now, that one sweet thing has been one cup of low fat tapioca pudding, so at least I am getting some protein and calcium out of it. Limiting myself to that is hard enough, since 8 of my top 10 favorite foods are desserts. I blame that on my proven low serotonin level, which goes back to the weak parasympathetic system, that requires plenty of serotonin to run properly.

I hope someone can answer your question about Gilbert's.

klutzo

I am sorry about the problems everyone is having.

I just thought I would say that I have never had much problem with what I eat and have no liver problems, but I am extremely alcohol intolerant.

I believe that alcohol intolerance in ME (I have had classic coxsackie B induced neurological ME since 1968) is due to its effect on a badly functioning brain.

Of course, having Gilbert's Syndrome or gut problems would make the effect even worse.

I have a cousin with GS (and no CFS). He was told it is fairly common and has no symptoms but is usually found incidently. Even if that is true having something like CFS must put a strain on a system that isn't 100% even if you get away with it if you are in good health.

Mithriel

Gilbert's , Lyme, Brains

Hi Mithriel,
I looked up Gilbert's and read that it is a common hereditary disorder that causes harmless jaundice and abnormal bilirubin levels. So, I do not have it, since I did not have jaundice, even when my gallbladder was failing.

As one of the many here who also have Lyme Disease, I can tell you that the prevailing theory as to why Lyme patients have alcohol intolerance is that borrelia, the pathogen that causes Lyme, converts sugars into ethanol. Hence, we are already somewhat drunk! This helps to explain the persistant yeast overgrowth, brain fog, sleepiness, slow reaction time, vertigo and clumsiness.That is also why the high protein, low carb diet that messed me up so badly is usually advised.

You are certainly correct about our brains being messed up. Like most of us, I went through years of testing, being told over and over that all my tests were normal, until I finally landed in a Neurologist's office 8 years into my illness. Every test he did came back abnormal, and I was thrilled. How crazy is that to be thrilled at abnormal test results! I know you all can relate. We get so tired of being told there is nothing wrong with us, that even bad news is a cause to celebrate because it provides validation.

klutzo

No i can digest properly, pancreatic enzymes didnt do anything special for me. The only thing that helps really is antibiotics or spasmolytics, it makes my bloating a bit less. I also have terrible terrible constipation and this i take fiber+senna (Agiolax) to deal with. Its a miracle drug, i take it for 10 straight years.

Anyways i am on the way of searching/trying some immune enhancer or some immune response shifter but dont know of anything that works for sure. I want to try oxymatrine again but its a very strong alkaloid and all of them cause me suppression of my stress system dizziness, fatigue, nervousness, blur vision and so on.

Align sounds good but i never understood whether a person with immune problems can handle probiotics at all. I tried this yoghurt Activia and i ended up in the hospital at day no3 because probiotics had build up in so large numbers inside of me that i couldnt breath no longer.

So align could be a difficult choice, but i might try it after i use antibiotics to see what it does. I really dont believe though that probiotcs have so powerful anti-inflammatory effects like antibiotics.
Same goes for glutamine that they say helps with Iga but i doubt it does, you might want to take loads of it daily

SIBO and enteroviruses (two pronged treatment)

Hi Solon,

I have experienced recurrent SIBO and treatment with systemic antibioltics as well as non-systemic anti-biotics (xifaxin). The xifaxin has worked wonders, at least temporarily. My docs don't think that the enteroviruses are a direct cause of the SIBO. Rather, the enteroviruses (and other co-infections) slow the small intestines natural rate of motility via autonomic nerve damage. The slowed motility then allows bacteria from the colon to migrate into the small intestine where they proliferate and result in SIBO. For me, the fix is two part; 1) get rid of the bad bacteria with xifaxin (400 mg four times a day for 15 days) and replace it with a probiotic (Florastor - twice a day indefinitely). This gets rid of the SIBO and the difference between the pre and post treatment hydrodrogen breath testing is very clear. The second part is trying to get the motility going and in my case my docs think the issue is viral damage (enterovirus and HSV-1). I am on acyclovir for the HSV-1 and will soon be starting on oxymatrine to try and treat the enteroviruses if a stomach tissue sample that is now being analyzed for live enterovirus comes back positive.

The point my docs made was that the oxymatrine is not going to treat the SIBO directly. The SIBO is caused by the low motility which is caused by nerve damage. We need to treat both the overgrowth and the viral impact on the motility nerves. For what it is worth, the xifaxin on its own provided a huge degree of improvement (almost no D in two months - the previous several years had been hell). My gastro has just written me an open Rx so that if the SIBO returns I can start on it before it gets to bad. We expect the SIBO to come back at some point, at least until we get the motility back to normal. Good Luck. Shane

Shane - motility

Hi Shane,
Do you know for certain motility is the issue, as opposed to low secretory IgA for example ?

I, too, have SIBO and the most frustrating part if figuring out why, there could be somany different reasons.

Suzy

Suzy,
I have been bugging my GI doctor about SIBO for ages as a cause for my abysmally low pancreatic enzyme production and he is very resistant to the idea. He still feels my pancreas is done for, despite 2 CT scans with contrast and an MRCP that were all normal.

I know from salivary adrenal testing (ASI tests) that I have a low sIGA. Is that what you are talking about? If so, how would that affect the GI tract? Would it be more mucosal infections and more susceptibilityto infection? But then, we're right back to SIBO, aren't we?

My test report said low sIGA was due to sympathetic overflow and stress, and that I should take phosphytidal serine and do exercise to bring it up. I tried PS for months and it did nothing but empty my wallet. I already exercise and have done so regularly for 22.5 of the 24 yrs. I've been ill, though I've had to reduce the length and intensity over time as illness progressed, doing more stretching and lifting and far less aerobics. I put up with some degree of PEM because I also have severe Fibro, and without exercise I get so stiff I can't move. Also, I take 5 grams of Creatine on exercise days which greatly increases my exercise endurance and reduces lactic acid burn.

I am confused about this and any ideas are welcome.
Thanks,
klutzo

Klutzo, The SiGa, yes, I have a low one as well. Tht can also cause SIBO. And then even if SiGa is the cause, then what ? What caused that ? It is so frustrating.

Suzy

Hi Suzy,
Thanks for the clarification. What frustrates me is that antiparasitics make me stop breathing, and I am allergic to all antibiotics except fluroquinolones, which are not used for SIBO. My doctor says there is no way he is giving me antivirals for an unproven viral infection in my bowel. So, how can I get rid of the infections?

Instead, he tells me to take Florastor, which did nothing after 3 months, so I stopped it. How to fix this is what I can't figure out. I have to take over 600 prescription enzyme pills per month to eat anything now, and they cost a bundle . Retail price is $600. I am now paying $45, but when I hit the Medicare Part D coverage gap, I will have to pay at least $253, the cheapest price I could find in calling around, and can't afford it. Medicare is billed full price in counting down to the coverage gap, so I will be there by May. I need to get rid of this problem so I won't need these drugs anymore. I worked on our taxes this past weekened, and we spent 21% of our income on medical out of pocket last year! If we had any debt at all, like other people have, we'd have had to declare bankruptcy, and we are both insured. It's insane.

What are you doing for your low sIGA?

klutzo

sIgA

I read in a study that bifidobacteria bifidum brings it up, so a deficiency I assume must cause low sIgA. So, I take that (havent' rechecked though) and also vitamin A.

It does seem to be helping my digestion.

Thanks, Suzy. I am glad that works for you.

I already take a great probiotic with plenty of bifidum and 14 other strains, with 35 billion active organisms in each dose. I take it twice daily. I also eat plain yogurt. When I get thrush, or yeast under my breasts like I have right now, I take it 3 times daily and open the capsule up into a spoon, which I dump on my tongue and mush it around in my mouth as long as I can stand it before swallowing. I also use ketoconazole cream under my breasts after each shower. So, I guess I'm still screwed, since none of that has helped.

I read somewhere on this board that taking probiotics before the bugs are killed is counter productive, since your immune system attacks them as if they were bad germs, which takes it away from attacking the truly bad germs. I find that hard to believe, but who knows.

klutzo

Hi Suzy,

My Gastro is pretty sure this is a motility issue (I have a number of other autonomic issues - including cardio) but I couldn't say that there is absolutely no chance it is IgA related. I have had a lot of immune testing with some clear abnormalities. Is there a specific test for secretory IgA (I'd be glad to check my reocrds).

What I do know is that the xifaxin did wonders for the SIBO and we are waiting on the tissue reviews to confirm active enterovirus infection (endoscopic visual inspection was consistent). I've tried other antibiotics in the past with either no improvement or significant side effects. The xifaxin is expensive (and I had to argue with my insurance co. as it is usually used for three days and my doc wanted me on it for 15) but it does not cross out of the intestinal tracts into the blood stream (thus the label 'non-systemic'). It was hugely effective and I felt none of the antibiotic side effects that I experienced with the other meds. As for combining probiolotics and antibiotics, I started both simultaneously (may have just been senidng the probiotics to an early demise) and then continued the probiotic (florastor) indefinitely. My gastro doesn't think that the florastor is going to prevent a recurrance but that it will most likely delay a recurrance and thus minimize the need for antibiotics. So far I have been GI pain/'issue' free since the later part of October.

We all know this is not one of the more pleasant sides of CFS.

Best of luck,

Shane

Hi Solomon and others,

wondering if anyone on this list with CFS and GI problems has tried following Specific Carbohydrate Diet - SCD? (I believe someone mentioned in earlier posts a low carb diet). It often does wonders for Crohn's, colitis... any inflammatory GI conditions really. It is often used sucessfully in autism when kids display GI symptoms (and even in absence of obvious symptoms).

A friend of mine who suffered CFS felt great during Atkins diet, (she didnt click at the time why that was so...), then a year later, as her CFS and gastro issues got worse and she decided to try some of my sons autism protocols her with nothing to lose and me noticing how many similarities there were between the two of them. She fist removed gluten from her diet, which did wonders for bloating and diarrhea then later on went on an almost SCDiet removing all sugars and most complex carbs, added probiotics etc and pulled herself out of gastro problems completely. Now can handle sugars, only has to stay away from gluten most of the time.

My friends GI symptoms were not as bad as yours sound and SCD is not easy to do, but worth giving a go
http://www.breakingtheviciouscycle.info/
the book can be found on amazon or ebay even
http://www.breakingtheviciouscycle.info/book/the_book.htm

there is now also a modified version of SCD called GAPS diet, I dont have details on it but many swear by it for their kid's gastro issues.

Sibo

And the SiGa is still low ? Maybe it'sthe vitamin A tht's helping me. I've also been on Rich's protocol plus pycnogenol for a littleover a month and that could also be helping. Also, HCL and pancreatic enzymes. I'm just not sure.

Suzy,
it may be the HCL. That is one thing I can't tolerate because I also have bile reflux gastritis and HCL burns like crazy. That should be a big help for you.

klutzo

Damaged motility is certain. Nothing works for me, no drugs whatsoever to increase it. Its surely damaged. I am starting oxymatrine low doses becasue i also have adrenal fatigue and low testosterone and cortisol and damage to the conversion rate of t to dht because of a hair loss drug.

I hope oxymatrine does something, i will aslo try replacing some of the bad bacteria with a micture of lactobacilus and bifidobacterium. Is lactobacilus any good ??? Yet i always find probiotics to make my motility less and bloating to increase. I hope there is some change from using those specific strains and constipation leaves me. actually its not constipation just NO MOTILITY

I just had my annual gastric endoscopy and have now been diagnosed with gastroparesis, on top of the bile reflux gastritis, and metaplasia I already have. In otherwords, my stomach is partially paralyzed and will not move the food out. They found a snack in my stomach that I'd eaten 12 hours before the procedure!

The only good news was my L-glutamine supplement cleared up my esophagus completely. No more signs of bile reflux damage and no more pre-Barretts. Yeah!

I was told to prevent reflux due to this gastroparesis, I must not eat within 5 hrs. of lying down, but I should eat six small meals daily. How in the heck can you fit that in, if you can't eat after 5-6 pm?

I have not got blood sugar results yet from labs done yesterday, but diabetes is the number one cause of gastroparesis. (Just got results called in while typing this. Am not diabetic. )

Number two cause of low stomach motility is vagus nerve damage, which sure rings a bell with me, since I have advanced Lyme Disease. I would bet CFS can cause vagus nerve damage as well.

Solon, if probiotics make your motility problem worse, I'd better reconsider them. I've taken them longer than any other supplement, even before I got sick. I started taking them in 1983!

Also, like most Lymies, I take magnesium with each meal and at bedtime, but just read that it slows stomach emptying.

I also must take a heart drug called Verapamil to stop a serious Lyme caused arrhythmia, and it also slows stomach emptying. Catch-22 once agan.

For now, I discovered that light exercise daily seems to help a lot to get things moving (I had been doing it only 3 days per week and not quite as long a routine).

Also, my doctor recommended Ensure for breakfast. I had always resisted that because it has so much sugar, but it really seems to help. I think maybe I am absorbing the liquid vitamins in it better than my solid capsule ones. I eat 6 prunes each morning, which keeps my bowel going great, along with my usual diet........

The recommended diet for low stomach motility is awful. White bread, mashed potatoes, baby food, purees, juices. No raw food like salads, no nuts, no high fiber food, no oranges or broccoli. In otherwords, none of my normal diet. I am not giving up healthy eating without trying everything else first.

Since gastroparesis can get so bad that you are throwing up several times daily and must have a pacemaker implanted in your stomach, or be fed from a liquid food bag into a picc line, I am trying to get on top of this now, but am not willing to take drugs like Reglan. I already have some signs of tardive dyskenisia due to brain damage from Lyme, and am not willing to risk ending up with permanent facial grimaces and tics. Ginger and nutmeg both help move food along. I will try those things first.

Isn't it strange how so many of us have stomachs that move too slowly, and bowel's that move too fast? Or vice versa, or some other motility problem. Sounds like a mis-firing autonomic nervous system problem to me, and that could well be coming from the vagus nerve.

Acupuncture is supposed to help this a lot, but I can't afford it.

Almost forgot, another cause of this that was mentioned to me is post-viral effects. No mention of which one though.

klutzo