Article Implicates Unhealthy Gut in GBS

Good article Alice. I have emailed it to several friends. We believe that hubby’s CIDP was someone related to his incidents of diverticulitis and irritable bowel sorts of things that went on well before he came down with CIDP. We take Udo’s probiotics.
Laurel

I am on board with this and I think that it is the root of all my problems. I started taking a probiotic (Garden of Life) a few months ago and it has dramatically helped me with nausea, gastro issues, etc. It doesn’t help me with pain issues, but having a centered “gut” helps you cope with the other issues. Thanks for sharing.

Good Post. I have a long history of eating PLAIN yogurt several times a week. It must have nothing added, no sugar, no fruit for example and I will not eat low fat fat yogurt either.
It seems that gluten is my enemy and since I haven’t been tested it could be gluten sensitivity, gluten allergy or full blown celiac disease, but I know when I’ve been glutened.

Hi everyone,
I can relate to this because for the last few months, my stomach has been feeling really odd. I am bloated to the point that I look pregnant, and it is a hollow, feeling that 1 word can describe, YUK! I can’t even zip my pants! I thought it was bloat g due to gas for a while because it lasted so long that I lived on gas x for weeks without improvement. I went to a new specialist, Dr. Nancy Klimas, the medical director for the Chronic Fatigue and Fibromyalgia Center in Miami because on top of CIDP, I also have those 2 conditions, and then some:-/:eek: She ran a battery of blood test and I tested positive for coxsackie B2 AB, a virus that attacks the gut!!!
The way I contracted it was from my daughter who caught slapped cheek syndrome, a.k.a parvo 5. It is a virus that went around in Nov-Dec, 2010 in the school system here in Miami. Little did I know that even though I didn’t display the flu like symptoms she had, I caught it in my gut:( My immune system is so compromised that I didn’t and still don’t have the defenses to battle it! So here I am, top button undone, uncomfortable a hell waiting for this virus to die! And since it is viral, there are no meds to attack it.
She ran some more tests on me that showed that I am not only fighting that virus off, without any defense in my blood, but 3 additional viruses to boot! Mono, HHV6(measles) and shingles!!! I tested positive for nearly all Ebstein-Barr viruses!!! Good Lord!!! No wonder I am so exhausted all the time!! She clarified that I have less than 5% of my NK cells (natural killers) in my blood, which is what would kill these viruses for me. What a mess!!!!!!!!!
Anyways, I’m blabbing and off track. Here is what I really want to pass on to you. There have been a few very promising studies showing the existence of a retro virus called XMRV. It has been found consistently in patients who have diseases like ours that almost always leave us suffering from Chronic Fatigue Syndrome. It was discovered about 6 months ago and there are more papers backing it than debunking it. Besides, there are always skeptics! Read about it. I’m not saying that it will cure your bad gut, but if the studies keep finding this in patients with compromised immune systems, she is guessing that a study will be made of it within 6 months. The good news is that there will finally some physiological backing to our dx. Some hard evidence, therefore, some much needed money from the NHI, FDA, government or whomever the hell is supposed to watching out for our health. I think she said it can be confirmed with a endoscopy/biopsy of the stomach lining. That is where the virus lives and where it can be found. Talk to your doctor about it. It was very interesting and I for one, would like to get to the bottom of this bloated belly of mine. I just had a round of IVIG and am hoping that will supply me with the antibodies I need to kill this coxsackie B2 AB so I can finally zip my pants. If not, I am getting the test to see if I have the XMRV virus and take it from there.
BTW: for anyone interested in the blood work done to find out that my immune system is working on overdrive, but not targeting sick cells due to lack of NK cells in my blood and also a test that proved beyond a shadow of a doubt that I have Chronic Inflammatory disease due to high TFNa, the blood test performed was:
Cytokine Multiplex-18 Report.
If you have a good relationship with your doctor, ask if he/she can run this test for you and then take it to an immunologist for translation. I paid $850 for the consult that lead me to that test, which answered a lot of questions and let me and my neuro know that I am not exaggerating about my fatigue. It’s not depression, it’s part of the CIDP that has caused these immune disorders that are keeping me in bed with Chronic Fatigue. Save your money ($850), get the test and for those of you having a hard time convincing your doctors, give them the results and shut them up once and for all!!! There is no denying medical evidence, no matter how naive. My neuro said “Wow! This is starting to make sense”.
Really doc?????
Be well.

For a long time now I have been saying that the gut is the center of all of this. 80% of the immune system is centered around the gut. We also were positive for having had mono (epstein barr) we also have h-pylori, another gut issue, which can cause so much havoc on the body it is unbelievable. We also had these fevers and sweats a few times a WEEK!!! No one would listen, infectious disease, imunologist, finally I dropped them and went to our pc and she swabbed our nose to find out there was staph in the sinus. We have been on a course of 3 month antibiotics. As you would expect, they cause their own host of problems, so we take about 24 different pro-prebiotics a day. We are going to re-test for the h-pylori through a stool sample to see if we still have it. Apparently once you test positive through blood, even after treatment…antibiotics, you always test positive, therefore necessitating the stool sample. This stuff is all connected, the leaky gut which allows neurotoxins from the holes in the gut to escape which increase production of mast cells causing allergies, and on and on. There really is something to be said about those worms. Apparently it is in phase three now and having some good reults with ms and ra. On the otherhand, a uc patient actually did worse. So in the end, like everything else, wait, see be patient. Yeah right! Thanks for the blood work info, I will pass it on to pc.

Florencia,

“… 3 additional viruses to boot! Mono, HHV6(measles) and shingles…” Many times, the tests for virus are not for the viruses themselves, but instead for the antibodies to the virus. This is true of tests for Epstein-Barr (mononucleosis), HHV6 (which causes exanthema subitum, also known as roseola; not measles), and varicella zoster (the virus responsible for chickenpox and shingles), all three of which are herpes type viruses. Over >90% of Americans over 40 have been infected by all three of these viruses and would therefore be positive on a simple antibody test. I would only be concerned about finding them if I had an unusually high concentration of antibodies or the viruses themselves were identified.

On XMRV, it was first described in 2006. A link to CFS was first suggested in 2009, but replicate studies were inconclusive. To address possible differences in classifying patients and test techniques, a multi-center trial was started in 2010. Early results are inconclusive. That is not to say that XMRV is not implicated in CFS or other diseases, just that it is not a slam dunk yet.

Godspeed in recovery from your Coxsackie B virus infection.
~MarkEns

[QUOTE=MarkEns]Florencia,

“… 3 additional viruses to boot! Mono, HHV6(measles) and shingles…” Many times, the tests for virus are not for the viruses themselves, but instead for the antibodies to the virus. This is true of tests for Epstein-Barr (mononucleosis), HHV6 (which causes exanthema subitum, also known as roseola; not measles), and varicella zoster (the virus responsible for chickenpox and shingles), all three of which are herpes type viruses. Over >90% of Americans over 40 have been infected by all three of these viruses and would therefore be positive on a simple antibody test. I would only be concerned about finding them if I had an unusually high concentration of antibodies or the viruses themselves were identified.

On XMRV, it was first described in 2006. A link to CFS was first suggested in 2009, but replicate studies were inconclusive. To address possible differences in classifying patients and test techniques, a multi-center trial was started in 2010. Early results are inconclusive. That is not to say that XMRV is not implicated in CFS or other diseases, just that it is not a slam dunk yet.

Godspeed in recovery from your Coxsackie B virus infection.
~MarkEns[/QUOTE]

Thanks for that information Mark. I am going to go around town to every doctors appointment I have this week with my results to get more input. When you say you would only worry if the antibody concentration was high on the tests. They were. EBMA-G, VCA-G and EBV-EA-G show the calibrator II should = 20 AU, I tested in at 277 AU, 227.23 AU and 24.61 AU (those test and results in the same order).The HHV-6 is positive if >1.00, I tested at 12.80. What has me the most worried though is my lack of NK (natural killer) cells (CD3-CD56+). I have less than 5% of what I should have. Without these cells, I am not going to be able to fight off any viruses that come my way, or are already in my system. Let alone my CIDP!
What I found interesting is that the Red Cross and United Blood Banks started discouraging CFS patients from donating blood as of December 2010. They are already outright banned to donate in the UK.
I think that the papers and studies you are reading are from 2006, when this virus was first discovered and then put on a shelf and forgotten about. The latest publications are as recent as 2/17/2011 and you will find that the tune has changed from one of non urgent to one that needs immediate attention due to it being found as a human pathogen in 2009. It is now classified as a retro virus. There have only been 2 retro viruses in our generation has had to deal with, HIV and HBLV (something like that). Now XLMR has been classified as the 3rd human retro virus and the NIH, FDA and CDC are growing more and more concerned due to the lack of prep, testing and possible contamination to the current blood supply. Not only in the USA, but in the 80 countries that are involved with the World Blood Banks and it’s current inventory.
I hate to panic, but I also hate to sit on my hands and wait for my doctors to come to me when they get their aha moment. That did nothing for me in the past but allow my Miller Fisher Syndrome to mutate into these awful diagnosis that I will now have to live with for the rest of my life. I opt to be as involved as I possibly can with this and bring it to my docs. I will be tested further, even if I have to go to 10 doctors to find the test and pay out of pocket. The risks are too high. Not to mention that I was sick during my pregnancy and breast fed my child. I don’t want to even think about the possibilities of this being passed from mother to child (it is passed by bodily fluids including breast milk) . I would rather know and monitor my kids as closely as I can. Educate myself as much as humanly possible and be proactive for their sake. I’m already sick, but I live with the fear that I put them at risk for not only this new virus, but a neuro auto immune disorder.
I was told by my doctors that CIDP is not hereditary. I wish you could hear the confidence in their voices when they tell me this, because it is not there.
It turnsout that my mom suffered from a neuro auto immune disorder when she was a child. On my father’s side, I have an aunt and 1st cousin with Myasthenia Gravis. ISo I carry the gene from both parents. When I told my doctors this, they took back the statements of it not being hereditary and have changed the no to a maybe. That is scary to me. I give them the info as I receive it as my family is spread around the world. The more info I give them as I get it, the more they think it is hereditary……. I don’t like those odds for my kids. I don’t want to dismiss any possibilities or overlook any possible symptoms. Now hearing about XMRV, well, it’s just something else to be informed about so I can be cautious.
Although reading about it, going over my health journal and bloodwork had convinced me that I must be tested and soon to protect those around me. I want to be as safe as possible and if it’s too late, then I need to get my husband and kids tested so I can sleep at night.
Please read the current articles. You quoted an article from 2006. Google it and look at the most current studies. As I said, there are studies debunking it. But there are always skeptics. I stopped being skeptical of CFS and fibromyalgia when I couldn’t get out of bed due to fatigue and started sleeping through holidays from hypersolemnence. My ignorace made me deny treatments and miss the last year and a half of my family life. I don’t want anything to rob me of my family again. My kids, husband and I have a lot of weekends to make up for, Halloweens and Christmas celebrations I have not been a part of I am now making up for. I don’t want to be blindsided by any more diseases. Not for a while at least….. You can’t blame me for being so concerned. My children are finally getting used to having a mother that is awake enough to greet them most days after school. I am terrified of losing those precious hours I have…….:(

Well,
Since you brought up the word “aids” Guskno, they are actually calling it hiv-x, that is why they are trying the aids antivirals on some people (as I mentioned in the first response to you, I was just afraid to mention the aids word) Apparently, the study itself has some issues, apparently the initial docs doing the study admit there was some sort of contaminant and that could have been the reason for the results. The female doc has since stopped workingw/ that partner and is continuing to work herself. Several tests on others with fibro/cfs have been done on others since and they show no high incidence of the virus being present in cfs/fibro patients. Anyway, it is kind of like my leaky gut/worm thing, new, it will take a while till people get on board. I wrote another thread, off the cuff ideas, I just don’t get why docs just don’t connect the dots that some virus keeps the body in a attack mode causing these autoimmunes and till we treat these virus’s, the attacks will keep on coming. in my other thread, I express that it is just a matter of figuring out what is the worst poison, the anti viral drugs, cytoxan or as some have tried the rituxan?

Florencia,

I have been wanting to go see Dr. Klimas since last year, but she does not accept insurance for the clinic. Were you able to get this covered? Possibly it is only out of state that is not covered?

Another member and I had corresponded because we both had vaccine injuries. He has been treating at this clinic. Did she put you on the treatment regimen? It is supplements. I have been doing part of this since June of last year. While I have noticed improvements, I am definitely nowhere near 100%. As for the viruses, I had my doc up here check for these and I was negative for all of them. The tests may be more sophisticated though that she does.

Was it worth a visit to see her? I would have to pay a lot out of pocket.

There was a recent article in Wall St. Journal about CFS research, and she was not in this article. However, I spoke with a local person and he said that “noone else has the skills that she has.”

If you can, send me a PM. Thanks.

Guskno,

My daughter’s cidp was caused by Fifth’s disease or Parvo b19 as was confirmed by the NIH. When they do DNA testing of her blood she has a little virus still in there but not more than 100 copies which is the cut off. There used to be a mother who posted on here a couple of times and she said that her son’s cidp was caused by coxsackie. We are the only 2 that I know of that KNOW that their cidp was caused by a virus. We have been told that her immune sysem is normal and not deficient but I would like to have that confirmed. She get’s very little colds or anything. Thanks for sharing

Florencia,

I am sorry that you antibody numbers are so high, but it is good to know that the testing was thorough. I hope that your doctors can find some way to bring them under control.

As I scan the 96 entries that a PubMed search returns for “xmrv” since October 2009 (done today), it seems to me that the jury is still out on XMRV links to human disease. As you know, an article in [I]Science[/I] (October 2009) linked XMRV with CFS. Some scientists have reported similar resutls, while others have not been able to reproduce the findings. There is enough controversy that the Blood XMRV scientific research work group was established in mid-2010 to sort out the causes of the discrepancies. This group just this month published their plans. The blood agencies are restricting collection from CFS sufferers because of the [I]Science[/I] article and an abundance of caution based on their experience with HIV. Their restriction neither proves nor disproves that XMRV causes CFS; they are being cautious until it is demonstrated more clearly one way or the other.

Your doctors probably mean hereditary like hemophilia or Huntington’s disease is hereditary. By that definition, GBS or MF is not hereditary. However, there is likely a genetic susceptibility to autoimmune diseases, probably involving a large number of genes that have unusual expression (either too much or too little). I believe there is: I have a cousin with MS and another with RA, but only on my mother’s side.

Godspeed with your tests. I hope they prove negative, but should they prove positive, you will have the jump on the diseases.

~MarkEns

Thanks Mark! I am hoping that my test come back a with better results next time. I am now found extensive testing of the adrenals with a DHEA-S testing kit, which is a 24 hour saliva test that marks the cortisol in the saliva which will let us know how and when my adrenals are or are not working. I am Also doing a 3 day stool sample test, looking for live bacteria and parasites. My doctor said that it is an extensive and expensive test because the one covered by insurance looks for parasite particles or even dead ones. She also said that we all have these in our system from the food we eat. Say I eat a piece of fish today, it will show up in tomorrow’s stool sample as having dead parasites because even cooked fish have parasites. So, I am paying a few hundred dollars to have these tests run at a specialized lab. Along with all of this, I am having a on of additional bloodworms done. I will keep you all posted on these results. Especially the stomach ones! She is thinking that along with the the cocksackie in the gut, I am most likely hosting something in the intestine. I will keep you all posted on my results.
Thank you all for your support!

[QUOTE=MarkEns]Florencia,

I am sorry that you antibody numbers are so high, but it is good to know that the testing was thorough. I hope that your doctors can find some way to bring them under control.

As I scan the 96 entries that a PubMed search returns for “xmrv” since October 2009 (done today), it seems to me that the jury is still out on XMRV links to human disease. As you know, an article in [I]Science[/I] (October 2009) linked XMRV with CFS. Some scientists have reported similar resutls, while others have not been able to reproduce the findings. There is enough controversy that the Blood XMRV scientific research work group was established in mid-2010 to sort out the causes of the discrepancies. This group just this month published their plans. The blood agencies are restricting collection from CFS sufferers because of the [I]Science[/I] article and an abundance of caution based on their experience with HIV. Their restriction neither proves nor disproves that XMRV causes CFS; they are being cautious until it is demonstrated more clearly one way or the other.

Your doctors probably mean hereditary like hemophilia or Huntington’s disease is hereditary. By that definition, GBS or MF is not hereditary. However, there is likely a genetic susceptibility to autoimmune diseases, probably involving a large number of genes that have unusual expression (either too much or too little). I believe there is: I have a cousin with MS and another with RA, but only on my mother’s side.

Godspeed with your tests. I hope they prove negative, but should they prove positive, you will have the jump on the diseases.

~MarkEns[/QUOTE]

Thanks Mark! I am hoping that my test come back with better results next time. I am having additional extensive testing of the adrenals done with a DHEA-S testing kit, which is a 24 hour saliva test that marks the cortisol in the saliva which will let us know how and when my adrenals are or are not working. I am Also doing a 3 day stool sample test, looking for live bacteria and parasites. My doctor said that it is a more extensive and expensive test then usually run because the one covered by insurance looks for parasites, parasite particles or even dead parasites in the stool. She also said that we all have these in our system from the food we eat. Say I eat a piece of fish today, it will show up in tomorrow’s stool sample as having dead parasites because even cooked fish have parasites. So, I am paying a few hundred dollars to have these tests run at a specialized lab. Along with all of this, I am having a ton of additional bloodwork done. I will keep you all posted on these results. Especially the stomach ones! She is thinking that along with the the cocksackie in the gut, I am most likely hosting something in the intestine. I will keep you all posted on my results.
Thank you all for your support!

[QUOTE=MarkEns]Florencia,

I am sorry that you antibody numbers are so high, but it is good to know that the testing was thorough. I hope that your doctors can find some way to bring them under control.

As I scan the 96 entries that a PubMed search returns for “xmrv” since October 2009 (done today), it seems to me that the jury is still out on XMRV links to human disease. As you know, an article in [I]Science[/I] (October 2009) linked XMRV with CFS. Some scientists have reported similar resutls, while others have not been able to reproduce the findings. There is enough controversy that the Blood XMRV scientific research work group was established in mid-2010 to sort out the causes of the discrepancies. This group just this month published their plans. The blood agencies are restricting collection from CFS sufferers because of the [I]Science[/I] article and an abundance of caution based on their experience with HIV. Their restriction neither proves nor disproves that XMRV causes CFS; they are being cautious until it is demonstrated more clearly one way or the other.

Your doctors probably mean hereditary like hemophilia or Huntington’s disease is hereditary. By that definition, GBS or MF is not hereditary. However, there is likely a genetic susceptibility to autoimmune diseases, probably involving a large number of genes that have unusual expression (either too much or too little). I believe there is: I have a cousin with MS and another with RA, but only on my mother’s side.

Godspeed with your tests. I hope they prove negative, but should they prove positive, you will have the jump on the diseases.

~MarkEns[/QUOTE]

Hi Florencia.
Are you seeing a naturopath? Those are the test I always talk about that we did for the lg stuff. We learned so much. If it is a naturopath or OD, they will treat your body like a whole picture, not a puzzle. Don’t you have bcbs? If so, they did pay for all of the saliva, stool blood even hair samplings. The only thing they did not pay for was the parisistology because the naturopath is not an md, therefore they feel he is not qualified to read the info. If they only knew in fact how he blew the md’s out of the water. I imagine some of the blood work they will be doing is the eliza test if not, you should just ask for it. It will tell you what food sensitivities you have. Removing those food items along with the probiotics had helped us tremendously with so many symptoms. FYI, some parasites are actually good for you and actually heal people from many of these autoimmunes. Of course, some parasites are deadly, it is just a matter of finding out which ones you have or don’t have. If anything, the info you will obtain from these tests will open your mind in a whole different direction regarding your body and its function. It is truly amazing how complicated and intertwined each function is to the next. Keep us posted, I would like to see what similarities we have in results.

My GBS was caused by virus. Saw a fabulous doc at Ohio State who focused on total health, which for me meant testing for celiac and food allergies. For a year after attack before finding him, I had little recovery. I am now grain free and dairy free. I am sure my health issues were based on digestive problems which had gone undiagnosed for years. Note, I’m a boomer and digestive compromises often show up at this age.