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IVIG and Xiflaxan: A Dr. Peterson Patient Improves

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Cort, Aug 28, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    I just got this e-mail from a patient of Dr. Peterson's. He's been seeing him for quite some time and has improved markedly over the past months it appears. Ampligen lead to some improvement and IVIG and xifaxin for leaky gut bacterial overgrowth have helped him markedly.. He wasn't bedridden or anything but he's had a long-standing case of ME/CFS and is clearly doing much much better.

    Dr. Park is a big IVIG fan - he reports very high success rates for his patients in Korea. I just don't hear about it that much here.

    http://aboutmecfs.org/Trt/TrtIVIG.aspx

  2. hvs

    hvs Senior Member

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    This is good stuff, Cort. Thanks for sharing. And good for you, emailer!
    Again, this is another case that shows that Dr. Peterson simply tests the living heck out of his patients and then tailors a treatment to fit. Yes, he understands CFS (or whatever this thing should be called) to be about immune dysfunction and pathogens, but that doesn't mean that everyone who walks in the door gets blasted with antivirals. The treatment for the emailer is vastly different than the treatment Ross and I are getting.
  3. kolowesi

    kolowesi Senior Member

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    Cort Xiflaxan

    Thanks for this info. I haven't heard of that drug.

    Maybe I can do a trial sometime. I have enterovirus in my stomach, and I'm pretty sure I have leaky gut.

    My IgG levels have always been in normal range, group 4 just barely, and I used to take IgGs that are supposedly absorbed in the gut (immunolin). Lately I haven't been taking it and I can tell a difference.

    I love hearing these stories. Yay!

    Kelly
  4. winsomme

    winsomme

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    Xifaxan

    Cort,

    Is it possible to find out the dosage, # of times per day, and # of days of treatment this patient was on Xifaxan?

    It sounds like a short course of treatment which would be consistent with how Xifaxan is being studied in Irritable Bowel Syndrome (IBS).

    I also wonder about replacing good bacteria after treatment with products like Align and Yokult.
  5. busybee

    busybee Senior Member

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    Myhill

    What we need, of course, is an antibiotic which is not absorbed systemically and is specific to those hydrogen sulphide producing bacteria. This could be a prescription drug, or a herbal preparation. Initially, I would suggest rifaximin, which is a non-absorbable antibiotic widely used for travellers' diarrhoea with very few side effects and low risk of antibiotic resistance. It must be taken with high dose actively fermenting probiotics such as Kefir

    take rifaximin 200mg three times daily for three days, then a maintenance dose of 200 mg daily and then re-check a urine test to see if we are making progress.

    http://www.drmyhill.co.uk/article.cfm?id=452

    Bx
  6. Cort

    Cort Phoenix Rising Founder

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    Dr Peterson's patient did a followup email. Apparently doing both IVIG and Xifaxin was key for him. He hasn't responded to my question about dose.

  7. busybee

    busybee Senior Member

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    Aahh - Now to check out whats available in the UK

    Bx
  8. Solon

    Solon Guest

    Isnt IVIG so very expensive?? Does anyone know if it is readily available in hospitals for use?? I would like to try. What are side effects?? My intestines are swollen up i cannot eat or sleep without drugs any more. Drugs are messing up my head. I can barely walk inside my house from the brain fog and head pressure
  9. CBS

    CBS Senior Member

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    Xifaxin alone

    Amongst other issues, I have a long history of recurrent SIBO (recurrence is very common with SIBO). My gastroenterologist finally prescribed a two week course of Xifaxin at 200 mg QID (800 mg/day - 60 tablets). The recommended dose for 'travelers diarrhea' is 200 mg TID (600 mg/day) for three days (nine tablets).

    My insurance co balked but my gastroenterologist was great.

    The bottom line is that I had horrendous GI symptoms prior to trying the Xifaxin including a bout of septic shock that landed me in the hospital for three days this past summer (campylobacter infection probably from slightly under cooked chicken but I was the only one that got sepsis - which was probably made more likely by the SIBO).

    Before taking the Xifaxin, the SIBO recurrence was confirmed with a hydrogen breath test. Two weeks after completing the Xifaxin my hydrogen breath test was absolutely negative. Better yet, before the Xifaxin, a lot of abdominal pain and GI symptoms. About 10 days into treatment, no abdominal pain and nearly no GI symptoms. I do have enterovirus co-infection (thought to make SIBO more likely). Hoping this holds. No noticable negative effects from Xifaxin. I also started on a probiotic at the time I started the xifaxin (scorched GI assault - glad it isn't systemic). I am going to continue the probiotic.

    Meeting tomorrow with my gaastroenterologist to talk about long term plan for enteroviruses and SIBO. Nearly all of the improvement has been limited to abdominal pain and GI problems. I should note that shortly after finishing Xifaxin I was started on acyclovir (HSV-1, EBV, enterovirus).
  10. Solon

    Solon Guest

    How long have you been taking xifaxan for?? It gives me nausea and dizziness.
    Which probiotic are you using ?? I thought that people with immune deficiencies cannot use probiotics because their body cannot clear out the bacteria no matter if good or bad and this causes bloating.

    I tried activia yoghurt once for a couple of days and it made me almost die in the middle of the night from bloating. I think it was one of the most horrific experiences in my life.

    Now since i have been coinfected with an enterovirus i get bloating so severe every day that i nearly faint. I live on Mebeverine but this started bringing headaches even at 1/6th of the normal dose and i cant handle them. Plus my body is started to readjust to low dose mebevering and symptoms of bloating and tension are restarting.

    I had seen someone using herbal intestinal antivirals here but cant remember the name. I am desperate to use something with no side effects and some improvement in treating the inflammation of my intestines.

    How inflammed are yours??
  11. Advocate

    Advocate Senior Member

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    Hi Sarah,

    There was a story on plasma on the front page of the busiess section in yesterday's New York Times: Is Money Tainting the Plasma Supply?


    "To satisfy demand for plasma-based medicines, the industry has increased the number of collection centers to 408, from 299 in 2005..." The story says that many people from Mexico have been crossing the border to donate at the centers, for money.

    They don't mention XMRV, but I thought this was relevant:

  12. CBS

    CBS Senior Member

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    Xifaxin

    Hi Solon,

    I just barely walked in the door from seeing my GI.

    I took xifaxin for 15 days (roughly 10/20 - 11/4). The relief of GI symptoms was dramatic. I too had been quite a bit of bloating. Before the xifaxin, I used genasyme (generic Gas-X - a lot cheaper but had to ask the pharnacist - kept behind the counter for some reason) and that provided short-term relief from the bloating (but not any of the other GI symptoms - pain/cramping/diarrhea).

    As for symptoms, findings and tests, I had severe diarrhea 15-20 times/day. I have diabetes insipidus and the GI issues were compounding problems with fluid balance. Colonoscopy was completely negative, upper GI endoscopy was positive for inflammation of the antrum and culture of the duodenal fluids was positive for bacterial overgrowth. As I stated, my hydrogen and methane tests were very positive before xifaxin (I was extremely careful to follow dietary and medical requirements on days preceding pre and post tests). On the pretest my hydrogen was already positive before taking the lactulose. Even so, my hydrogen and methane levels both increase significantly over the base lines.

    I told Dr. Montoya that I was on the probiotic (Florastor and he didn't seem too concerned). I also talked with my GI about this today. He was a bit concerned but wanted me to stay on them for the time being and keep in touch. My GI was also very interested in Dr. Chia's enterovirus work as well as Dr. Kerr's recent study confirming unique genetic expression for CFS AND association of enterovirus infection among three of the genetic subtypes. It looks like we'll be sending biopsied tissue for viral confirmation very soon.

    Lastly, my GI and I discussed the the mechanism likely to be causing the SIBO; autonomic neural dysfunction and enteroviruses. His feeling was that the autonomic neural issues were the most likely candidate (lack of motility). He also said that the enterovirus may be a direct cause but that he could not describe a mechanism. He was also concerned about the difficulty in treating enteroviruses. The bottom line was that he was very open to trying to address the enterovirus issue (oxymatrine) and, acknowledging that the xifaxin was not treating the underlying cause, he would not be surprised to see the SIBO return (more xifaxin). Ideally, treating co-infections will restore autonomic neural function.

    In the past I have tried Levofloxacin (Levaquin) with metronidazole (Flagyl) - no probiotics - for 7 days and had absolutely no relief (and I was completely wiped out by the strong systemic action)

    I'm sorry to hear that you've been having so much difficulty. Hopefully some of this will be of use.


    Sarah,

    I saw the NYT on story and had the same thought as Advocate.



    Shane
  13. jenbooks

    jenbooks Guest

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    Thanks for that article, Advocate. I use Talecris. They make IVIG in glycine rather than in sugar and salt. Their product is not reconstituted (ie a powder you mix with sterile water) and is kept refrigerated until use. I'm not so concerned with Mexicans donating (many cross the border daily in El Paso to work) as long as they're screened like Americans. Blood donors have often done it for money. I'm more concerned that no shortcuts occur in purification and storage. We've seen that occur with some drug companies (Mylan). The latter could be a serious issue. You recall tainted heparin from China that killed people. I'd rather there be spot inspections unnanounced to be sure nobody is cutting corners.

    I use Atrium frozen peptides from Douglas Labs, an oral product said to be made under aseptic conditions with no additives of any kind. A recent batch tasted like cherry and my inquiry resulted in their admission they'd not changed the tubing (their regular products are often cherry flavored) and they'd have to go over procedures with their employees etc. I say for an Rx product that requires freezing and has no additives, use fresh sterile tubing when you make it. Who was cutting corners?

    Money corrupts industry. One of my bottles of IVIG last week was bubbly. I don't like that even though they say protein products can bubble and I'll probably pay to fedex it back and get a replacement. Another concern is that the product must be refrigerated (36 to 45 degrees) to last until its expiry date (usually 3 years from date of manufacture). Otherwise, if it goes to room temperature or close, it is good for the next six months only. I began to wonder about shipping. They ship it on ice overnight but does it really stay as cold as it should? And what about when it's shipped from the manufacturing site to various warehouses?

    I don't think I'm overly cautious, not with what I've read and seen and heard in general.
  14. jenbooks

    jenbooks Guest

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    Probiotics

    I've never heard this. However, many probiotics contain fillers that could cause reactions (and do in me) such as maltodextrin, which I can't tolerate. In addition, many strains produce d-lactate which can cause bloating. Try culterelle. It's very well tolerated.
  15. Solon

    Solon Guest

    So youthink i can take a probiotic and not blow up like i did in the pasT?? i am really looking for this probiotic. I wonder if align does something.

    In the meantime, i just cannot believe that in the year 2010 there is no treatment for enteroviruses nor any herbal antibiotic that i can use because xifaxan causes drowsiness in me after a while.

    I bought today some pine cone extract and willing to try it and also some cat's claw.

    Also i have started trying the charcoal tablets to pull some bacteria and air from my gut. It seems to work for a couple of hours or so and i feel more energetic and intestines a bit more free.

    Yet the massive swelling in the lower right quadrant of my intestines where ileum meats cecum remains. This massive inflammed chunk of intestine. I wonder how the muscular walls can be so inlfammed...
  16. jenbooks

    jenbooks Guest

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    Hi, Solon. I don't know for sure. But I am very sensitive to fillers in probiotics. I tolerate Culterelle well, and it doesn't produce d-lactate. It's been the subject of a couple hundred pubmed studies (lactobacillus GG). Get it from a good source--the one time I bought it from Vitamin Shoppe it was slightly discolored ie too old. I order mine from Allergy Research Group. Probably it is also available at vitacost or iherb.
  17. CBS

    CBS Senior Member

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    Herbal enterovirus Tx - SIBO versus EV

    Hi Solon,

    If you have not already done so, I would encourage you to at least consider the Gas-X. It works by breaking the surface tension on gas bubbles in your digestive tract. No bubbles, no trapped air, huge amount of relief for me.

    As far as your response to the probiotic, I really can't say. I have not had issues with Florastor. I have looked at Align (cheaper and easier to get) but right now my primary goal is not to rock the GI boat. My gastro agrees for the time being that it is best to not argue with success.

    Just to be clear, it is my understanding that xifaxin does nothing for enteroviruses (perhaps aside from giving your body one less thing to fight). IN MY CASE, xifaxin is to treat SIBO. If I am not mistaken, SIBO is common in CFS folks and while seen with IBS, it is distinct from/only accounts for a subset of IBS.

    Dr. J Chia does have an 'herbal' remedy that he 'prescribes' to treat enteroviruses; Oxymatrine (see 'Phoenix Rising' - Treating Chronic Fatigue Syndrome (ME/CFS): Oxymatrine - http://aboutmecfs.org/Trt/TrtOxymatrine.aspx). I have not started on oxymatrine (Equilibriant) and I will not start on it until I can confirm the presence of enterovirus RNA via a stomach biopsy (right now my antibody tests show levels expected with active infection for a number of enteroviruses and the biopsy found inflammation in the location of the stomach where enteroviruses are know to cause inflammation). Necessary Disclaimer (and for what it is worth); I'm taking a lot of other meds and I will only be taking this under the direct supervision of my CFS doctor and with the knowledge of all my other specialists. The Equilibriant site goes on at length about proper physician supervision. I don't know if they will even sell it to anyone directly. Getting the SIBO under control does help make the wait for yet one more test result more tolerable.

    The oxymatrine article on Phoenix Rising is part of a larger article on interferon and enteroviruses (Many thanks to Cort for all of the great interviews): http://aboutmecfs.org/Trt/TrtInterferon.aspx. In that article, Dr. Chia discusses his history with interferon and oxymatrine. If I am not mistaken, Dr. Chia no longer routinely prescribes interferon for CFS patients. Here is the link to the Enterovirus Foundation: http://www.enterovirusfoundation.org/index.shtml

    According to the EVF web-page, Dr. Chia is President of EV Med Research and a professor at UCLA.

    Also, as you may already know, enteroviruses can impact a number of organs throughout the body. While it is a huge relief to calm my GI issues down, long term, I am actually much more concerned about getting the systemic co-infections under control. In my case, the coinfections (EV amongst others) cause much more alarming symptoms and can lead to permanent neural and cardio damage.
  18. sarahg

    sarahg Admin Assistant

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    OK let's see if my brain is ok enough to be coherent?

    Jenbrooks, I don't know about the IV product, but the IM one specifically and emphatically states not to ever use it if it is bubbling. send it back! Mine (Gamastan SD) is from Talecris as well. (by the way, is anyone else a little freaked out to learn Talecris is currently owned by Cerberus?????? )

    Advocate, thanks so much for the NYT article. I have a lot of moral issues about plasma donation in general. It is something I think about a lot and it gave me more to think about. I can't say why but I am not really concerned about my safety, I have read a lot about the processes they sterilze with and what they test for and I just have my fingers crossed that nobody will screw up. What I am concerned about is the safety and health of the donors themselves and what leads them to keep donating. Drug development is exploitive. It is a flawed system. (not nearly as flawed as that of "control" drug testing by pharmaceutical companies, which are also often conducted in very poor neighborhoods with less than adequate concern for the health of those involved, there is a very good PBS special about that which I could track down if anyone has interest)

    I think back about the people I have previously known that donated plasma and some were not what I considered "safe" people. This bothered me and bothered me and I was talking about it with a close friend who struggled with heroin addiction for many years (thankfully clean for the past 2 1/2). He told me that he tried to donate plasma many times at different locations and in different states and was always turned away, and did not know of any addicts he had known that were'nt screened out. That made me feel a little bit better about safety.

    I do know a lot of healthy normal college kids who did it for money for food or to pay for books. I know people who did it or do it just because someone they know has benefited from plasma products. It is not all bad news.

    Like Jenbrooks, I don't have a problem with Mexican plasma, but I have a problem with exploitation, and that will happen anytime you put a plasma clinic in any poor neighborhood, border or no border.

    The antitrust accusations, the fact that much of the world uses US plasma, and the potentially overinflated costs of the product make me wonder if industry collusion is responsible for product shortages. Maybe it would be worth my writing to NYT and asking in case they do a follow-up? The FDA has a webpage that keeps a running account of shortages of products in this industry, as they happen so frequently. I really do wonder if the shortages are "manufactured" to keep prices up and regulation down. That just pi**es me off, but I am also of the belief that most pharmaceutical companies are corrupt and exploitive, so I am not by any means surprised.

    It all does make me wonder what concrete steps are needed to reform the industry and make it fairer for both donors and recipients. I have always had mixed moral feelings about this therapy, while my medical feelings have been nothing short of elation. If it does keep helping and I do keep getting it, it may have to be my next big "project" to try and push for reform.
  19. jenbooks

    jenbooks Guest

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    Thanks Sarah. The distributor I'm working with is open to an exchange I think. Talecris beat around the bush when I called and I was very annoyed. I would have to send it back and they'd have to do an investigation of the product and could not say if they'd refund me unless it was actually not good etc. Well better safe than sorry??? I will send back that bubbling one.

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