Enteroviruses, Stomach biopsies, and more.......

Discussion in 'Fibromyalgia Main Forum' started by swedeboy, May 19, 2008.

  1. swedeboy

    swedeboy Member

    Hi Ya'll!

    I just recently had an appointment with Dr.Montoya.
    I brought up the idea of having myself tested for a chronic enterovirus in my stomach. So Montoya referred me to a GI specialist at Stanford to have a biopsy taken from my stomach and then have the biospy tested for an enterovirus. However, Montoya told me that I should contact C.Loomis of the HHV-6 foundation about which lab to send my biopsy to.

    Has anyone had there stomach biopsied for an enterovirus? and if so which lab did you have it tested at? Also would anyone describe the procedure for me, because I am very nervous to have it done, something about taking a piece of my stomach away sounds painful!

    I would like to know in advance which lab tests stomach enteroviruses so I can tell my GI specialist where to send the biopsy to. I contacted C.Loomis, But I haven't gotten a response yet.

    Any info would be great.

    Smiles, Sean

    P.S. Here's the Abstract that gave me the idea.

    Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach.

    By: Chia JK, Chia AY. EV Med Research, Lomita, California 90717, USA. evmed@sbcglobal.net

    Journal of Clinical Pathology. 2008 Jan;61(1):43-8. Epub 2007 Sep 13.

    BACKGROUND AND AIMS: The aetiology for chronic fatigue syndrome (CFS) remains elusive although enteroviruses have been implicated as one of the causes by a number of studies. Since most CFS patients have persistent or intermittent gastrointestinal (GI) symptoms, the presence of viral capsid protein 1 (VP1), enterovirus (EV) RNA and culturable virus in the stomach biopsy specimens of patients with CFS was evaluated.

    METHODS: 165 consecutive patients with CFS underwent upper GI endoscopies and antrum biopsies. Immunoperoxidase staining was performed using EV-specific monoclonal antibody (mAb) or a control mAb specific for cytomegalovirus (CMV). RT-PCR ELISA was performed on RNA extracted from paraffin sections or samples preserved in RNA later. Biopsies from normal stomach and other gastric diseases served as controls. 75 samples were cultured for EV.

    RESULTS: 135/165 (82%) biopsies stained positive for VP1 within parietal cells, whereas 7/34 (20%) of the controls stained positive (p< or =0.001). CMV mAb failed to stain any of the biopsy specimens. Biopsies taken from six patients at the onset of the CFS/abdominal symptoms, and 2-8 years later showed positive staining in the paired specimens. EV RNA was detected in 9/24 (37%) paraffin-embedded biopsy samples; 1/21 controls had detectable EV RNA (p<0.01); 1/3 patients had detectable EV RNA from two samples taken 4 years apart; 5 patient samples showed transient growth of non-cytopathic enteroviruses.

    CONCLUSION: Enterovirus VP1, RNA and non-cytopathic viruses were detected in the stomach biopsy specimens of CFS patients with chronic abdominal complaints. A significant subset of CFS patients may have a chronic, disseminated, non-cytolytic form of enteroviral infection, which could be diagnosed by stomach biopsy.

    PMID: 17872383 [PubMed - indexed for MEDLINE]
    [This Message was Edited on 05/19/2008]
    [This Message was Edited on 07/18/2008]
  2. ladybugmandy

    ladybugmandy Member

    hello. k. loomis is good at getting back and she will have all the info. give her a day or so.

    good luck
  3. swedeboy

    swedeboy Member

    Ok Great! Thanks for the support!

    Smiles, Sean
  4. swedeboy

    swedeboy Member

    Thanks for the great info!

    I did receive a response from Kristin Loomis and she provided me with the form to send to Georgetown Univ.. However, Loomis told me to fax it to the "Pathology Dept." where my biopsy will be done. But I have know idea where the "pathology dept." is at Stanford. Montoya referred me to the " Gastroenterology Dept." So I'm not sure who to fax it to. Oh and I wonder how much it costs to have G.Town Univ. process my labs? Hopefully it's not too expensive. I wonder if Medi-cal or Medicare will cover the Georgetown Univ. lab fees?

    Did you have your biopsy done at Stanford, and if so who did you fax your lab form to, its the form that Kristin Loomis provides, the one for Georgetown Univ. lab.

    Has anyone had the biopsy done at Stanford and then had Stanford send the slides to Georgetown Univ.? if so any info would be great!

    Thanks for telling me about the procedure, I'm glad there was no pain! I'm curious about the drug 'versed' (sp?) Is it a sedative along with some amnesia?

    I haven't found any effective treatments for me yet, Montoya would like to try Clarithromycin for my positive IgG and IgA titers to C. pneumonia. I've already tried Doxycycline and Flagyl for C. pnuemonia. I'm not familiar with Clarithromycin, does anyone have any experience with or info about Clarithromycin.

    Smiles, Sean
  5. swedeboy

    swedeboy Member

    Is this the procedure?:
    Upper GI Endoscopy (EGD)
    An examination of the esophagus, stomach and the first part of the duodenum with a scope. Medication will be given intravenously to minimize your discomfort and help you relax.

    I found this info on Stanford's GI Dept. webpage.
    And I am wondering if this is the procedure that is done to get the biopsy? It only mentions a "Scope" and not an actual biopsy. I think I need and "antrum biospy" also, did you receive an "antrum biopsy" aswell?


    [This Message was Edited on 05/19/2008]
  6. acer2000

    acer2000 New Member

    I found it odd that Dr. Lerner tests for lyme co-infections but doesn't test for Bart. Oh well, I just sent my sample to IGENEX, they test for bart..
  7. Lichu3

    Lichu3 New Member

    Agree with Kelly that you should bring forms to your stomach doctor and see what the doc says. You should mention that Montoya sent you to them (although there is likely a written referral from him) and take the article you printed with you in case you run into problems.

    One other place to ask for help is the Whittemore-Peterson Institute. You can google for it. They have an e-mail address up and I know they are also interested in collecting tissue samples. Of note, Annette Whittemore sits on the HHV-6 board as well.
  8. swedeboy

    swedeboy Member

    Thanks for all the helpful info!

    I'm sure I was tested for that at Igenex, but I will double check. Funny story...When I was in Hawaii back in 1998 there was this house across the street from where I was staying and there was literally like 20-30 cats roaming around it and people would go over and pet them, etc.. So yeah I have thought about Cat Scratch Fever.

    Yeah the GI Clinic and the Infectious disease clinic (Montoya's dept.) at Stanford are both located in the same section/office of the Hospital.

    When I spoke to the Stanford Medical Assistant on the phone today she expressed that it would all be done in one appointment. So I got the notion that I would simply go and have the procedure with out having to consult with the GI specialist first. But it makes a lot of sense that I would need to see the GI specialist first, and then have the procedure after as a separate appointment.

    Thanks again guys! :)

    Smiles, Sean
  9. waltz

    waltz New Member

    Hi swedeboy,

    I noticed you said Ms. Loomis told you to send it to Georgetown. However, you are interested in chronic enterovirus per Dr. Chia's research that you posted. Dr. Chia does his own testing, and if you are specifically interested in Dr. Chia's research, it seems that you should have the biopsy sent to Dr. Chia. Also, he and his research had specific requirements for the biopsy to be taken from the antrum of the stomach and something like 2-3 pieces. It just seems a little weird to me that the instructions from Dr. Montoya are so vague.

    I'm wondering why Ms. Loomis told you to send it to Georgetown? Are they working with Dr. Chia? Or is she inadvertently steering you to another group of researchers on a different topic? Especially since the director of the HHV-6 Foundation is from Georgetown.

    I think it would be wise to find out exactly what is the relationship between the research and testing of Dr. Montoya, Georgetown, and Dr. Chia.

    Unless they have suddenly recently started all collaborating together, it's a little bizarre that if you are interested in chronic enterovirus testing because of Dr. Chia's research paper, that she would send you to Georgetown instead of to Dr. Chia. She has his info as well, so it seems that a reason should be given.

    (For example, if someone read Dr. Montoya's paper and was interested in testing for herpes viruses, they should go to his group for information and testing, not some other unrelated group of researchers on chronic fatigue. And it would make sense for the doctors to refer accordingly as well.) At least they should explain clearly why they are sending you elsewhere if they send you elsewhere.

    I'm glad to see you are interested in getting tested for enterovirus per Dr. Chia's research. I was interested in this myself as I had a stomach biopsy taken a few years ago. It is painless. Well, actually, when I had it done, the doctor gave me something that knocked me out. However, the pathology department where I had it done only keeps the samples for a few months afterwards, so I couldn't do the testing.
    [This Message was Edited on 05/23/2008]
    [This Message was Edited on 05/23/2008]
  10. swedeboy

    swedeboy Member

    Six slides from my Upper GI Endoscopy and Stomach Antrum biopsy will be sent to:

    Dan Hartman, PhD
    Director of Molecular Diagnostics
    Georgetown Pathology
    Georgetown University Hospital
    3900 Reservoir Road, N.w.
    Med Dent Building, SW 201
    Washington D.C. 20007

    Tests Required:
    HHV-6 (late), HHV-7
    EBV (early)
    Enterovirus, Parvovirus

    Personally, as long as the lab correctly and ethically tests my slides then I don't really care which lab they are sent to.

    Dr. Montoya didn't tell me the lab to send it to. He told me that I need to contact K.Loomis and that she'll provide me with all the info I need to get my slides to a good lab.

    Montoya was instrumental in only referring me to a GI specialist and to K.Loomis. Montoya also said that even if I am positive for a chronic stomach enterovirus that he doesn't feel comfortable treating me because the treatment is interferons.

    However, my C.Pneumonia IgG and IgA titers are elevated, and Montoya would like to treat it with clarythromicin (sp?). So far Montoya has treated me with doxycycline, flagyl, Valtrex, and one week long treatments of IV IG's.

    I'm still waiting to hear back from the GI Clinic at Stanford to get my appointment for the biopsy.

    Thanks so so much for the great feedback and discussions!
    All of the support is very helpful and I am overly grateful for having you guys to talk about this with.

    Smiles, Sean

    The smoke from the Santa Cruz Mountain fires has made its way over to silicon valley. When I woke up this morning the air smelled heavily like smoke and when I peeked outside visibility was poor from the smoky air. I Hope it clears up soon. I Wonder if the air is bad to breath? Maybe I should stay inside today.
  11. Timaca

    Timaca New Member

    Do you know what your titers are to C. pneumonia (IgG and IgA?)
    I have high titers too....

    You mentioned that Dr. Montoya has treated you with doxycyline, flagyl, valtrex and IV IGs. What were those for?

    What are you sick with that you know about (besides C. pnuemonia?)

  12. swedeboy

    swedeboy Member

    What am I sick with?.......well.........I wish I knew! In the mean time they call it ME/CFS, hehe. j/k :)

    My IgG titers for C.Pneumonia were 1:512 and my IgA titers were 1:128

    The Doxycycline and Flagyl were for the C.Pneumonia, the IV IG's were for parvovirus B19 (for a slightly high IgG), and the Valtrex was for a false positive from an IgG titer to HSV-1 that was so high it was off the charts according to Montoya. But I didn't need the Valtrex because the IV IG treatment falsely made my IgG titers extremely temporarily high for a short while. I am negative for HSV-1 and HSV-2 for both IgG and IgM.

    I'm not sure what you mean when you ask me what am I sick with? Like are you asking me if I know what caused my ME/CFS?

    Smiles, Sean
  13. winsomme

    winsomme New Member


    the enterovirus testing is interesting stuff. i have seen Dr Chia and he is a great DR.

    if this doesn't lead to an effective treatment for you, you might want to look into the marshall protocol.

    currently, this is what i am trying...

    this website was created by someone with CFS who recovered using this treatment.


    also the protocol website at:


    the basic idea is that the combination of Cell Wall Deficient Bacteria and the ensuing Vit D dysregulation is the underlying cause of many chronic immune diseases...

    can't say anything for sure personally, but you might want to take a look at it.

  14. swedeboy

    swedeboy Member

    Thanks for the info!
    Yeah I have read and heard a lot about the marshall protocol. The hardest part for me is the no sunlight thing. I am a sun-worshipper! hehe. Of all the ME/CFS protocols and treatments the Marshall protocol is last on my list.

    Smiles, Sean
  15. waltz

    waltz New Member

    Hi swedeboy,

    Thanks for the information. Interesting that they are testing for HHV-7 too.

    All the patients of Dr. Chia I have heard about were or are being treated with oxymatrine, a Chinese medicine herb (I think usually used for hepatitis). Someone else on the board said Dr. Chia's own son has been on oxymatrine for around 10 years and he is functioning normally, running, etc., and he believes it to be a safe drug.

    So I'm puzzled why Dr. Montoya said that the only treatment was interferons. Makes me wonder, did they actually talk and exchange information?

    This is my opinion- if tests show a "coinfection" with enterovirus, that holds A LOT of information. It probably suggests that dietary modification can have an effect on the disease since it is infecting the gut. But non-alternative doctors aren't going to entertain that idea. Even though it's harmless to read up on and try. (I mean, experimenting with a vegetarian diet or multiplying your fruit intake or eliminating a few types of foods has got to be thousands of times less risky and harmful than taking Valcyte or even an antibiotic, and especially if none of those have worked.) (There are lots of people who say that specific coordinated modifications to their autistic children's diets improved their functioning, and some even say it cured them. But of course, no non-alternative doctor is even going to listen or take a look at that.)

    I also think that if tests show positive that it shouldn't be assumed to be a coinfection; it's also possible that it's a "coreaction". But who's going to listen to a non-doctor's ideas...
  16. waltz

    waltz New Member

    Yes, the research results definitely have to be reproduced elsewhere. I don't know but it just seems like a behind-the-scenes way of getting patients to give their biopsies for testing. For example, a full-fledged study is very public and will be in clinicaltrials.gov and on the University or other official Web site, and everyone can read all the details of what's to be tested and the investigators involved. I guess maybe they haven't reached that stage yet.

    One reason why it would be nice to see exactly what they are testing is if they do different tests for enterovirus than what Dr. Chia did, then it's possible that the same sample could test negative at Georgetown and positive with Dr. Chia, or vice-versa.
  17. Timaca

    Timaca New Member

    With regard to my question as to if you know what you are sick with....I was referring to high IgG or IgA antibody titers...for instance you are treating the C. pneumonia, so you think you are sick with that. My titers are similar to yours for Cpn.

    I assume you've done some reading at www.cpnhelp.org? There is some info there about Cpn. Are you finished being treated for the Cpn? Did your IgG and IgA titers drop? I'm trying to start doxy for Cpn. My GI tract wasn't happy about it though, so I had to stop. I hope to try it again in a few days.

    I also have high IgG titers to HSV1. My doctor would like me on valtrex, but first he wants me on the doxy. I was on valcyte for I had high antibody titers to HHV-6, EBV and VZV. Those have dropped to normal now.

    Waltz~ Enterovirus doesn't infect only the gut. Some was found in my endometrial tissue via IHC staining.

  18. mshvan

    mshvan New Member

    I have read some information saying that IVIG is somewhat effective for enteroviruses.
  19. waltz

    waltz New Member

    That's interesting that your endometrial tissue tested positive for enterovirus. Did you get a stomach biopsy too, and did it test positive?

    I think I recall that you mentioned being a patient of Dr. Montoya too, which I'm assuming means you tested positive for some set of herpes viruses? In which case, you would be an example of a patient who tests positive for both enterovirus and herpes viruses. I've been digging around these forums trying to find out if there are and how many patients test positive for both!

    Yes, I have seen many studies referring to enterovirus being found elsewhere in the body. However there must be a reason why it's called enterovirus since "entero" means relating to the intestines. The question then might be, is it possible to have an enterovirus infection that does not exist in the gut while it exists elsewhere in the body. My "gut feeling" (hah, sorry about the pun) is that that is probably unlikely.

    Just my thought that the reason we find enterovirus in the rest of the body is probably because it's in the gut and that's the source. Maybe if we eliminate it from it's main home, then the rest of the body will clear.
    [This Message was Edited on 05/24/2008]
  20. Timaca

    Timaca New Member

    I have not had a stomach biopsy. A friend of mine tested positive for enterovirus via IHC staining in her cervical tissue. She has not had a stomach biopsy.

    I did (or do) have high antibody titers to HHV-6, EBV, VZV, HSV1 and Cpn. I've tested positive via IHC staining for HHV-6, HHV-7 and enterovirus.

    My "gut" feeling is that enterovirus is not limited to the gut...and likely affects the entire body.