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XMRV or Coxsackie Bs the cause of intestinal inflammation??

Discussion in 'XMRV Research and Replication Studies' started by Solon, Oct 25, 2009.

  1. Solon

    Solon Guest

    I ve been through alot, endless pain, isolation, severe financial issues and seeing my family members and other friends get mysteriously infected from this agent (not all of them, but at least half of my family which i never understood how, and almost 1 out of 3 of my girlfriends despite using condoms and other protections) I have paused from med school, lost most of my friends and all of my life pretty much.

    The biggest deal however to all this issue is the gastrointestinal problems which tear my every day living apart. I had biopsy showing inflammation of distant small colon, the lymph node aggregation is noticeable and it all fits the criteria of an enteroviral infection. The tongue appearance and glossitis signs are also evident but i never really understood weather it is the Coxsackie B viruses (which i recently got infected with and my IBS got doubled in intensity) or the retrovirus that causes this long lasting SIBO to develop and the inflammation to persist. Could eradicating the Coxsackie B help in lowering the symptoms of small intestine inflammation?? I recently purchased oxymatrine to shift the balance in my immune system but i am worried that this will decrease survailance of the retrovirus and it will become reactivated.

    This time i got infected with coxsackie i saw new lymph nodes in my neck and next to genitals and this makes me think that since coxsackie cannot cause persistent generalized lymphadenopathy, so it must be the XMRV that reactivated and does this. Its strange however, what do i have to do to get my IBS better?? I cant live on fibers and spasmolytics any more. Its killing me, i cant even sit for 10 minutes without feeling the bloating and pressure on my stomach, and defaecating doesnt help anymore.

    Anyone have any experience with antivirals for coxsackie or other treatments to lower bloating and inflammation in the intestines??

  2. _Kim_

    _Kim_ Guest

    I have tried antifungals, antibiotics, and liver cleanses. The only thing that has worked for me (and I have similar GI problems) is to exclude sugars, grains, and starchy vegetables from my diet. And when the pain and bloating are bad, massage and a heating pad on the belly help some.
  3. rockfaery

    rockfaery Guest

    My doctors are idiots and never did much beyond telling me it was IBS and eat more fiber... but I went on a gluten free diet and almost all the problems went away.. I ahve no idea what was causing all the symptoms but since my diet was gradual at first I don't believe it is genuine celiac disease.. I also had problems tolerating any meat for a while and now I have difficulties with dairy. I find if I am very very careful about what I eat most of the inflammation and other very icky symptoms can be kept at bay. I remember a few years ago a doctor in California I think found that there were frequently active viral infections in the stomach with CFS. If docs won't help maybe changing what you eat will at least reduce the symptoms?
  4. rockfaery

    rockfaery Guest

    Almost forgot to mention.. I also take licorice supplements which are supposed to help with intestinal inflammation
  5. Alice Band

    Alice Band PWME - ME by Ramsay

    Charcoal tablets - they really help me but I need to take a lot of them.

    Betaine HCL for after meals when the food seems to just "stick" in my stomach.

    Many years ago in the UK I had the VP1 blood test for entroviri but no investigations or help since then as I in the UK, they think it's all in the head....
  6. Solon

    Solon Guest

    It was ok to manage for the last 7 years, i just had to push my self to exercise as much as i could, avoid alcohol too much smoking and really sugary food. But, lately as i said i got reinfected (possible enterovirus since i had pleurodynia-not great but significant) and all of a sudden i get new lymphnodes appearing similar to the ones i initially developed 11 years ago. I am still clueless as to which is the most important virus to cause IBS. Antibiotics help but not for long (rifacol/xifaxan), cutting out sugars/carbos helps but not that much, problem is i feel such a tension and swelling in my belly that i cant really do much nowadays. I used to feel better after defaecation, now this doesnt matter at all as the inflammation has spread. I can grasp a massive chunk of inflammed intestinal tissue with my fingers at the point where small intestine connects to large (caecum). I dont know what will help, i dont want to live on fibers/antispasmodics any more. Ok fiber is good (agiolax is what i am using) but i really want to travel abroad and this inflammation is killing me- its been 5 years at home now- and i cant take any more of that, especially now that we have close to definate answers about the retroviral origin and sequence. I suspected retroviral infection since all the immune issues, lymph node location/constistency and spreading and acute infectious symptoms where 90% identical to HIV but my medical professors told me to go on a long vacation and forget about studying so hard, finally one of the doctors whom i saw in the university hospital, believed me and did most of the things i asked him to do, (like immune assays to check for CD3+CD4 consistencies and CD4/CD8 ratios and he was astonished) but as soon as PCRs HIV-1 and 2 where negative he told me to see some psychologist.

    biggest mistake in my life was that i did summer practice in a cancer clinic where one of the most respected retroviral researchers and labs where located but at this point (6 weeks post acute infection) i was too guilty and hesitant to talk to him. I cant believe how close i was, he would be the best person to identify this, since he found HTLV-1 and assisted in HIV-1 discovery too.

    11 years of endless self torture because of my stupid guilts and fear of getting dismissed from a great researcher (instead i prefered to return home and try convince all my quack professors about this issue- i wasted so much time and effort almost developed PTSD from their behavior)
  7. akrasia

    akrasia Senior Member

    Two products I've found useful recently for my moderate gut problems are Russian Immune Choice, made by Nutricology and Agave Digestive Immune Support by Life Extension. It's too early to give a full throated approval to either but if you're up to experimenting, you might give these a try.
  8. klutzo

    klutzo Senior Member

    Exocrine pancreatic insufficiency and failure

    I don't want to scare you, but have your digestive enzyme levels been tested? I don't want anyone else to end up like me.

    I suffered with these issues for a decade, unable to eat more and more foods as time went on, despite a normal stool IgA , which means I have no food allergies. I even had my gallbladder removed, before finding out my pancreas just wasn't making enzymes any longer. Dr. Cheney and Dr. Hyde have both written that this is the number 3 cause of death from CFS, but I have never met anyone else on any CFS forum who has been diagnosed with it, other than myself. I do hear these complaints constantly though, and I often wonder if this is the underlying problem. For those who have Lyme like I do, Dr. Klinghardt also writes about this problem, and says it is due to the loss of parasympathetic tone that regulates peristalsis, digestion and absorption, due to extreme sympathetic dominance.

    I now take prescription enzymes with everything that goes in my mouth and eat a very low fat diet. It is very expensive, as the (expletive deleted) FDA just took all the generic enzymes off the market. OTC enzymes are not enteric coated and don't make it through stomach acid to the small bowel, so they are a waste of money if you really have this problem. We are now stuck with outrageously priced brand name prescriptions.

    Gross content warning! Symptoms are the ones you describe, plus as it gets worse, you will have steatorrhea that sticks to the commode, and clear oil floating on the water in the commode. That clear oil slick is a red flag for exocrine pancreatic insufficiency specifically. Eventually, you will be eating so little that you lose a lot more hair than normal, and you lose weight rapidly. You can also have upper right quadrant pain, just like gallbladder attacks. The bloating can be quite severe and can even cause shortness of breath and rapid pulse. Ascites is possible. Both gas and stool are especially noxious in odor. Stomach spasms are one of my main symptoms, and I still take Librax for it.

    Most doctors I've seen are unaware that CFS can cause this problem, but I'e never been able to see a CFS specialist. Exocrine Pancreatic insufficiency's usual causes are alcoholism or cystic fibrosis. In some people small gallstones backing up into the pancreas over and over again, blocking ducts and causing the enzymes to eat the pancreas itself can cause it.

    For decades I was told it was "just IBS" as it slowly got worse and worse, while I wasted a ton of money on treating leaky gut, yeast overgrowth, gastritis, etc. Then, when a special procedure found tiny gallstones, the doctor thought that caused it for me, but symptoms came back after gallbladder surgery. Subsequent tests show no damage to my pancreas. It just isn't making enough enzymes.

    It is worth a simple serum lipase test to find out, IMO, since this condition lowers life span by an average of 20%. The sooner it's found, the less damage and the less likely you are to have complications, not to mention that you would need less enzymes if it's caught early. They cost a fortune and are rarely covered by insurance.

    I hope that is not your problem, but if it were me, I'd want to rule it out. Best of luck to you,

  9. FernRhizome

    FernRhizome Senior Member

    If anyone is having problems eating they might want to consider having a gastric emptying test. It's a simple test in which you eat radioactive scrambled eggs and then have a series of x-rays. If the stomach muscle isn't working that the gastric emptying is delayed. It's helpful to know if that's the case as then you can go onto a gastroparesis diet which is high protein, low fat, and low fiber. There are also colon inertia tests that are similar. You swallow a capsule with markers and then have a series of x-rays over a week & then can figure out how slow the colon is. I have paralysis of both stomach and colon and I've several times nearly died as a result. But a gastroparesis diet and medications can help in both cases. ~FernRhizome
  10. Countrygirl

    Countrygirl Senior Member

    Just thought I'd mention a couple of things in case it helps anyone........

    Reading Klutzo's post about pancreatic enzymes really struck a chord with me. Twenty years ago, after being severely ill for several years and unable to eat more than a very few foods, I tried supplementing with pancreatic enzymes. The result was amazing: I could suddenly tolerate a much greater range of foods and it was a turning point for me. I improved a little, and no longer had to survive on the dreaded rice cakes and very little else. I have never heard of anyone else using the enzymes. Thank you, Klutzo.

    In recent years, I have found that following a very low carbohydrate diet ( a modified Atkins) helps considerably with the symptoms of IBS. (Of course, this automatically excludes two of the usual suspects:gluten and sugar.) I think I picked up this idea from Dr Bruno's book, The Polio Paradox. The improvement in gut symptoms was quite dramatic and rapid.
  11. Suzy

    Suzy Guest

    pancreatic enzymes

    Are you using prescription pancreatic enzymes or off the shelf ?
  12. Countrygirl

    Countrygirl Senior Member

    Pancreatic enzymes

    Hello Suzy,

    The pancreatic enzymes came from Lambert's, U.K. A private doctor recommended them to me. They certainly made a difference; however, I wouldn't like anyone to take them without medical advice (difficult to get, I know) because it may not be your problem. I don't know if they could harm you in that case. Perhaps someone here could advise? I just wish I had known about this aspect of the illness years before.

    Hope the above is of some help, Suzy. :)

    Best wishes,

  13. klutzo

    klutzo Senior Member

    Enteric coating is all important for enzymes

    Edited to add that I just noticed that neither of you are from America, so all the part about Medicare and donut hole coverage won't apply. Sorry to waste your time, just ignore it. Maybe your health coverage will include these drugs. If so, lucky you! I will need to rob a bank to afford it once I hit the coverage gap next year.

    Hi Suzy and Country Girl,
    For the first few years of my problem, I got by with off the shelf enzymes, because my problem was minor. I also assumed it was due to my Fibro/Lyme, since I had read about how those things made digestion difficult, so I did not go to a GI specialist. I had no idea it could be so serious. At that point I did not know I had CFS and had not read anything by Cheney or Hyde.

    It started with not being able to digest beans and legumes, then cruciferous veggies, then eggs, then beef, then other veggies, then poultry and fish, then raw fruits, then cold grains, until the only things I could eat were hot cereal and canned fruits.

    Absorption takes place in the small bowel, and more than 90% of off the shelf enzymes are destroyed by stomach acid, so they will only help with a minor problem. I have searched but have not found a single over the counter enzyme that is enteric coated. The really good prescriptions are not only enteric coated, but have little microbeads inside the capsules that are time released. Creon is the best brand, IMO. I've had free samples of it, and it is far superior to the generic, plus I only needed 120 capsules per month as opposed to over 600 generic caps to get the dosage I need. Creon is not covered under any Medicare plans....I've looked. Pancrease MT brand is the best you can do, and none of them cover it when you hit the gap aka the donut hole.

    How did a minor problem become major? The vaunted high protein, low carb diet is how. I let several doctors talk me into ditching my life long preference to be a lacto-vegetarian for a high protein, low carb diet. This was due to a diagnosis of metabolic syndrome after menopause redistributed all my extra weight onto my stomach. My body reacted very negatively. I lost all energy and could barely walk to the mailbox. My stomach felt like I was eating lead weights, I had frequent chills and shakes, etc. My body really wanted to eat as it always had, but I did what the doctors told me to do, thinking they knew best. Huge mistake. The problem is that protein foods all have fat in them. My life long preferred diet had been naturally very low in fat. That is when all hell broke loose.

    Ironically, I am now back to a lacto-vegetarian diet, since the only no fat protein you can get is dairy. I have also found out recently (Dr. Klinghardt) that most Lyme patients have some degree of acquired acute porphyria, and therefore need a high carb diet or they get very sick. Coming from him, that is quite an admission, since he has been one of the biggest pushers of the high protein, low carb diet.

    If you have a serious problem, you will need prescription enzymes. Up until a couple of weeks ago, you could get the generic pancrelipase as a Tier One drug on most insurance programs, meaning they were free or close to it, depending upon your plan. On my plan, now that I can get only brand names, I will be forced to pay $85 per month until I hit the coverage gap, which will be at the beginning of May in 2010. Then I must pay full price, up to $600 per month. I looked around and found the best deal with my Walgreens discount card at $253 per month. One problem is that no matter what you pay your insurance company, Medicare is billed full retail price and that is what counts towards your falling into the coverage gap.

    That was the long answer. The short answer is that if over the counter enzymes work for you, that is great, but it may progress to where that won't be enough, unless you can beat this disease before that happens. I would look for one with pancreatin in it, since it works far better than plant enzymes. None of the enzymes with pancreatin, which is in all the prescriptions I know about, are safe for those who are allergic to pork, so if you are allergic, you will have to see a GI doctor to find out if alternatives exist.


    P.S. Re: the possible risks question above: Too much lipase can in rare cases cause fibrosing of the colon, but that is only proven in those with cystic fibrosis. None of the over the counter pills have anywhere near enough lipase in them to cause that problem. The prescriptions are monitored by your doctor to avoid that. If you need a dose that high, my experience is that you will be asked to further reduce the fat in your diet instead. For example, I can only eat 15 grams of fat per day even with prescription enzymes. A normal person can eat 100 grams easily, and a person with mild pancreatic insufficiency can eat 60 grams with prescription enzymes.
  14. guest

    guest Guest

    Same here. The intestinal problems are the biggest problem for me too.

    @Solon: Try some Align probiotic. Probiotics are the only thing that help me (if you tolerate enzymes, great, unfortunately I don't and I tried all of them). There are tons of studies for many probiotics. They lower IgE and help with lots of other illnesses but I would try what fits best for you. The gut definetly is a huge problem with this illness and I hope that they advance in this field fast.
  15. Suzy

    Suzy Guest

    I was taking these for about a year.

    These enzymes contain both pancreatic and small intestine enzymes. The protease is acid stable but the lipase and amylase are not. They helped tremendously for about a year, then stopped helping.

    The other thing I learned from Rich V is that HCl is needed in order for the pancreas to release it's digestive enzymes. Are either of you taking HCL ? I'm taking a couple iwth each meal which helps but going to try taking more.

    Somehting else I learned recently is that mitochondrial dysfunction can cause GI problems including dysmotility and inability of pancreas tomake digestive enzymes. I got this information from Bryon Jepson's talk at the Spring 2009 Defeat Autism Now! conference. Here is the list of symptoms he presented:

     muscle weakness
     dysmotility
     GI problems
     IBS
     Hypotonia
     Diarrhea orconstipation
     Inability to make digestive enzymes in pancreas
     Hypoglycemia
     Fatigue
     Etc etc etc

    He goes on to say he believes teh vast majority of mitochondrial dysfunction is environmentally induced.

    I've done the diets, the enzymes, the probiotics, the fiber etc for years and my gut is still not digesting; there is something bigger going on. Just as soon as I am able, I'm going to be doing teh Acumen testing for chemicals/metals/pesticides/VOCs.


  16. klutzo

    klutzo Senior Member


    Hi Suzy,
    Yes, I have tried HCL. Even one capsule burned the living daylights out of my stomach. I tried it once putting lemon juice in my water plus taking OTC enzymes failed to do the job. I was told by someone on a forum back then that the burning meant I needed a much higher dose, but was too scared to try it after what happened, and what I'd read said that burning meant I did not need HCL.

    I have blood type A, which is the most likely to have low stomach acid, so I thought HCL would help, but it may be that I just can't tolerate it with my chronic gastritis. I also have a precancerous metaplasia in the antrum of my stomach and a strong family history of that cancer (40 X normal chance of getting it), so I don't want to irritate it any more than it already is.

    I wish I could tolerate HCL, since I've read that slow stomach emptying can be caused by low acid, which then in turn causes reflux of the undigested food. What I read said that the pyloric valve won't open properly until it senses the food has been digested to a certain level so it's ready for the small bowel, but I think if that were true, then food eaten by people taking acid blockers would never leave their stomachs!

    Many Fibromyalgia doctors believe the poor digestion is caused by the hyperactive sympathetic nervous system, since when it is turned on all the time like it is in Fibro, the parasympathetic side is turned off, and it is that side which handles digestion, sending blood to the digestive system to help digestion and absorption, proper movement of food through the system, etc.

    It is all very confusing. When I studied Naturopathy, I was taught that digestion is the single most important thing in determining life or death. I agree we need more research in this aspect of the illness.

  17. Parismountain

    Parismountain Senior Member

    South Carolina
    Watch out with the Walgreens prescription club. If you are on Medicare rx plan you are suppose to be thrown out of Walgreens or any similar club. Walgreens is suppose to catch it when you apply or renew.

    It makes no sense to me why this is, I'm on only two meds currently and neither are covered by Medicare D, excluded class of drug and they would qualify for the $10 a month generic price but they have to bill me full price since i'm on Medicare.

    Gotta love it, won't start a thread drift but I use to have a drug plan from my disability provider through my former company but when D rolled around they dumped me into D and now nothing I take is covered by the D plan. Thank you Govt, I'd have been better off if you never touched my insurance benefits.
  18. Martlet

    Martlet Senior Member

    Near St Louis, MO
    Klutzo - It sometimes feels like that to me. I'm on prilosec and as an example, I am still very full from a meal I ate over six hours ago. Then when it finally decides to move, there's an evens chance that my colon will get spastic and send me running to the loo. I'm going to have to mention all this to my doctor. I've had it for years but it has been worse since my GB was removed.
  19. meandthecat

    meandthecat Senior Member

    West country UK
    Hi country girl your mention of rice cakes took me back to pre-ME days.

    'I improved a little, and no longer had to survive on the dreaded rice cakes and very little else.'

    10 yrs of food sensitivity controlled by a strict diet disappeared a few months after the onset of ME. Apart from Gallbladder type twinges I had no pain just all the rest of the disgusting symptoms.

    Later I found out about Fructose intolerance which seemed to explain alot. These days I can eat anything and use rice cakes as fire lighters :D evil joy.

    I also live in the southwest and think that contamination/ chemicals in the water-supply started off my gut issues.
  20. klutzo

    klutzo Senior Member

    Sorry about hijacking this thread - did not mean to

    To all,
    There is a thread on the pancreas, liver and gallbladder where all this is discussed in detail somewhere on this board. I can't remember where Cort moved it, but that is where this discussion should go if it continues, since we are off topic.

    Hi ParisMountain -
    Thanks. I did not know they had changed the Medicare Part D policy. I just talked with Walgreens a week ago about the price on my drug and they did not say a thing! Maybe that is because they told me most of my drugs are so cheap they never even bill Medicare, and just use the Walgreens discount because it's a better deal. However, my enzymes are more than six times the cost of my other 7 drugs put together.
    I guess I will have to order from Canada, and if/when they start enforcing the ban on foreign drugs, I will just have to go gently into that good night, as they say. They say starvation is not a bad way to go after the first couple of weeks. Before the drug, I was losing four pounds per week.
    I have already tried getting help from the manufacturer of the drug, who said I would be turned down because I am on Medicare, even though it does not pay for my drug in the coverage gap, which is 2/3 of the year for me. Like you said, these policies seem very unfair.

    Hi Martlet -
    Gastroparesis combined with rapid transit of the bowel was my problem too, esp. when I was on Prilosec, but I still have it without it as well. That can be due to parasympathetic nervous system dysregulation, since it runs the peristalsis (movement) of the bowel.
    GB removal almost always makes IBS a lot worse.....the steady drip of bile into the small bowel afterwards is very irritating to it. Check out for diet advice, etc. on problems after GB removal.
    IMO, if there is any way you can get off Prilosec, I would very slowly wean off of it in order to avoid a rebound acid rise. In a recent anonymous survey, PPIs were one of 8 types of drugs doctors said they would never take themselves. In only one year on Prilosec, I doubled my previous 13 years of bone loss. It raises fracture risk by 44% for each year you take it. It greatly increases the risk of bowel infection coming up into and infecting the stomach, raises the risk of pneumonia and other respiratory ailments, prevents absorption of calcium and B12, and inhibits A,D,E and K absorption, and now they are saying it even raises heart attack risk.
    Two thirds of people on it really have too little acid anyway, not too much, but drug companies have no expensive purple pills to sell for that, so your doctor won't ever hear it. Enzymes, lemon water and sometimes HCL capsules can fix that.
    There is a simple test to see if you have too much or too little acid, but you must be off PPIs for a month so your normal acid level has stabilized before you can do it. You simply wait for indigestion during a meal, then stop eating and swallow a tablespoon of lemon juice. Wait three minutes. If you have too much acid, you should feel worse. If you have too little, you may be amazed by how much better you feel. This is where the old tradition of the lemon wedge served with your water began. People used to understand that squeezing lemon juice into their water was a digestive aid, esp. as they got older and naturally made less stomach acid and made less enzymes.
    If you are taking the PPI for ulcers, look into Mastic Gum and L-glutamine but tell your doctor and wean off even more slowly.
    Don't take my word for any of this. I am not a doctor, just someone who studied Naturopathy for years and experienced this in my own life. Do some research on your own and get both sides of the story.
    Sorry for the rant; it's just that this is one area where I am convinced the Naturopaths are right, and in any case, the risks I mentioned are well documented by mainstream studies. I hate to see anyone suffer a broken hip or other problem needlessly, just because conventional medicine is so pig-headed and profit oriented.

    Meandthecat -
    Congrats on being able to eat whatever you want. That is wonderful. I was just like you after many long years of working on leaky gut, until I let doctors talk me into a high protein low carb diet. That ruined me. Please have a piece of dark fudge with pecans for me. YUM. That is all I want before I die. I never wanted fatty foods until I could not have them anymore, and I ate an impecable diet. But, now that I can't ever have it again, I can't stop thinking about having a burger, fries and a coke! :eek:


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