hi all. i tried valcyte for 6 months and it did not work. all i have is 1:320 IgG for HHV6.

K. Loomis of the HHV6 foundation keeps telling me that i should have an endoscopy and check for enteroviral infection. she says many people are finding this.

has anyone at all on this board had this test???

thank you sue

I recently got a biopsy of the antrum per Dr. Chia, and I'll find out the results on Apr. 1. I've been taking oxymatrine, his prescribed herbal compound for enteroviruses. It's supposed to suppress the virus and tilt the TH1/TH2 balance toward TH1. He's still looking for a pharm company to invest in an antiviral, so even if you do show up positive, it might still be awhile before you can do anything about it with lasting effects.

On a positive note, his son who was diagnosed with CFS in high school has been using oxymatrine for the last 10 years and is now running 3-4 miles a day.

I'll let you know what he says on my next visit

-joey

thanks a lot for your response and please do let me know your results!

i see that you can order oxymatrine online..is this the same thing that dr. chia is using?

i heard demeirleir uses quercetin for enterovirus...

may i ask if you also have EBV, HHV6, or CMV?

thank you! sue

I haven't heard of quercetin for enteroviruses, but I have been taking it as an antihistamine.

I wouldn't order oxymatrine online. Dr. Chia uses a source from Kowloon Bay, HK as he is concerned about contamination from unknown chinese sources. It is my understanding that you would have to order this through him. What is the address of the source you found online?

I have EBV and HHV-6 titers, no CMV. However, I've never tested for the EBV early antigen, only positive IGM and IGG, and I'm waiting for those results to come back. I have 1:160 IGG for HHV-6, not considered extremely elevated but still elevated.

-joey

Sue,

Keep your eyes on Cort Johnson's Phoenix-CFS site in coming weeks. He will be posting a recent interview with Dr. Chia shortly.

Apparently Dr. Chia is talking with a number of pharmaceutical companies with regard to development of an anti-enteroviral. I have a feeling that if a correlation is shown this summer when Dr. Montoya publishes his study, we will see a snowball of interest for the drug companies, other researchers, etc.

He's still looking for a pharm company to invest in an antiviral, so even if you do show up positive, it might still be awhile before you can do anything about it with lasting effects.

This is what Dr. Levine told me as well. Apparently, Chia was also using IV immunoglobulins--very tough stuff.

With regard to having the upper GI endoscopy, how hard is it to find a gastroenterologist who is willing to play along? Did you guys end up running into "why is your doctor ordering this testing for a psychological disease" type stuff?

mj0ey, my HHV-6 titer (Quest) was the exact same as your (1:160). My illness was of instant onset in origin, with a brutal 3 month long upper respiratory infection, with a 6-week flu-like illness earlier that year (no psych issues, etc). I am curious as to what your game plan is. I tried 4 months of aggressive abx (high mycoplasma IgG) with no changes whatsoever.

I am curious as to your game plan for treatment at this point.
[This Message was Edited on 03/15/2008]

to found out where to send the slides after your endoscopy, please email: kristin_loomis@hhv-6foundation.org

i had GI issues too but i know i 1st had mono....:(

this is getting so hard..

sue

hi ria!

where did you get your HHV6 tests done? apparently, only Focus or Specialty are accurate.

my HHV6 IgG was a little elevated and this by no means proves active infection..it may suggest it. elevated IgM would prove it but this doesn't usually appear after a long infection.

if you do test positive for enterovirus, u can take a oxymatrine (buy this only from dr. chia's supplier due to possible contamination from other sources) or quercetin. there is no actual drug yet, just supplements.

please keep in mind K. Loomis knows A LOT and has been so much help to me....i am very indebted to her. however, she is not a doctor and not always correct. she told me dr. lerner would never treat me with antivirals because my titres were too low but he is treating me with antivirals.

good luck sue
[This Message was Edited on 03/16/2008]

hi ria. i re-start valcyte tomorrow (monday) at 1/2 the dose i was originally on (450 mg per day) due to some liver enzyme problem.

may i ask what your RNase L was? mine is VERY VERY high.

i didn't realize you had seen dr. cheney....thats pretty neat!

i heard valcyte does not have any immunomodulatory properties...just antviral...but i dont know this for certain. someone said montoya told them that.

i am at my wit's end with this disease. if only i had SOME clue..ANY clue..that i am on the right track...:(

thanks hon and all the best sue

I think Valcyte has a hefty list of side effects that include things like anxiety, insomnia, GI problems, confusion, etc... so its hard to tell whats a "dieoff" or whats just a side effect...

my rnase l was 1885 before treatment and normal was <50.

after 5 months of valcyte, it was still 1265.

i think the only thing that can help me is ampligen but i cant get it.

i am so so sick ...i honestly dont know how much longer i can hang on.

i dont even feel like i am here...my mind is gone.

Ladybugmandy==please hang in there. There will be a day (and I hope not that long anymore) when this will all be a lot better....

I know a CFS patient who started Valcyte b/c he tested positive for dr. Chia's stomach virus. Therefore I am a little confused...

To me: Valcyte is given to patients who have a viral onset, and elevated HHV6/EBV/CMV. When you are positive for the stomach virus (dr. Chia) you are not given Valcyte. Am I right?

Thanks!! Brainfogged Mariska

Sue,

Hang in there.

As I've said from the very beginning, this year is the first time I've EVER been optimistic after 13 years of this.

1) If Montoya's study shows a correlation when it is presented this summer, it has the potential to OPEN THE FLOODGATES with regard to new research, etc. The whole ID community will be throw on its ear.

2) Even with the clowns running Hemispherx running things, there is a good chance that Ampligen will finally release in 2008.

Hang in--things are finally starting to change for the better.

thanks guys. i was in bad shape yesterday...

pluis...that is correct. you would not be given valcyte if you had the enterovirus but maybe the person also had the other herpes viruses active?

aftermath...i always forget that there are people who have had this almost as long as i have on this board lol..thank you for reminding me to have hope.

even if ampligen is available in the states, it will be a long time before it trickles into canada...and even longer before the public insurance companies here will pay for it. i'm guessing like 10 years.

i keep reading and reasding (exactly what dr. lerner told me NOT to do) and still don't understand whether my defective LMW RNase L means that i have a genetic defect that will always prevent me from recovering or not.

my head is spinning....

thank you everyone. every post helps.

wishing you all the best sue

I'm bringing this thread back to top in the hope that someone can answer as to what hoops they had to jump through to get a gastroenterologist to do the endoscopy.

Are they generally willing to do this?

I know our diagnosis is considered sketchy by a lot of mainstream docs.

pluis, may i ask who is the doctor treating the cfs patient who tested positive for enterovirus with valcyte?

I don't believe that Valcyte is effective for enterovirus.

That is why Dr. Chia is using oxymatrine and trying to get interest from a drug co.

Question: If enterovirus is a factor, is there a unique set of symptoms to signal that as a possibility? I can't tell from reading this thread. If the information exists elsewhere if someone could point to that, thanks.

Wow, now this is whole other avenue to be tested and evaluated. Does it ever stop?

Sue, please don't give up. You have come too far. You only just started seeing Lerner in Jan so its still early to experience differently there. I am a bit concerned that he said quit reading. I understand WHY he said that. He is convinced he has the approach (don't they all?). Maybe he does and maybe he doesn't, who knows, but he does have something to contribute. He has done some fantastic diagnostic work. Treatment is a whole other challenge, as we all well know. As I see it, "trust but verify" with each of them, and that means never quit reading as it was reading that got us this far in the journey to recovery in the first place. No disrepect to Dr. Lerner meant, but I would disregard that part about stop reading, just my opinion. Each must decide their own course.

For me, I have to constantly be reading and asking. I feel like a woman possessed to find a way to get well. This has become my job. One I can only do reclined with a laptop. The only way I can get through this is to be actively engaged in the work of finding possible answers. I think it is how I keep my sanity for the moment.

If nothing else, it always reminds me there is hope of another option if the current one fails. I don't think I could take the emotional blow out when a current approach isn't all the answers and I am standing empty with no idea what the next step or direction should be. I am not sure that any one single approach is the answer, though it could be for some. For many of us, it is pieces of answers to fix our out of whack systems; finding that just right match to our personal chemistry imbalance. I think while many of us share symtpoms, that our imbalances are unique to our chemistry and genetics. I am always lining up the next step option while on the current one. I am sure at some point that complexity of that may flatline me, but for now it is all I have to give me hope to keep searching and lining up tests and treatment trials.

Hang in there hon! When is your next appt with Dr. Lerner? Is he still doing diagnostics or has he moved fully into treatment options? Sorry, I know you have likely posted all of this and I have read it elsewhere, but my pathetic brain won't let me retain much detail, especially not at 6:30 am here.

jam...thank you for the kind words:)

symptoms of enteroviral infections are GI symptoms - mainly upper GI i think, such as nausea. i am not 100% sure about this though!

dr. lerner has me on valcyte now but only at 450 mg a day due to some liver enzyme elevation.

i did complete 6 months of valcyte before i saw dr. lerner, at 450 mg twice a day.

i am now going to try to be patient, because i have run into a few people who say it took them years on antivirals to see improvement..and i have had CFS a long time.

love sue

Why is she recommending the enterovirus testing? What does it have to do with the HHV-6 foundation?

hello. she is recommending enteroviral testing because of dr. chia's study showing enterovirus in 89% of CFS patients by tissue culture.

i don't think it has anything to do with the hhv6 foundation. i think she is just trying to help...

sue:)

Thanks for the info, ladybugmandy.

Has anyone here tested for both? I'm curious how many people test positive for both the enterovirus by biopsy, and HHV-6, EBV, CMV, etc.

hello. i think aftermath sees dr. levine and said she is waiting for results of some biopsy samples she sent away.

levine usually answers her email. perhaps someone out there can email her?

sue

Ms. Loomis is in touch with many of the top ME/CFS docs out there.

Obviously, the docs are looking at the role of HHV-6 in causing ME/CFS. Still, HHV-6 is thought to work in tandem with other viruses (Dr. Montoya's hypothesis for ME/CFS involves interaction with EBV). Enterovirus may be another one of these.

Ms. Loomis is often asked about people with lower HHV-6 titers. She is just trying to pass along her best info--that a lot of top docs are seeing enterovirus as well.

The HHV-6 Foundation is a great outfit. We can only hope that they broaden their horizons, as they really have our best interests at heart.

Yes, I am a patient of Dr. Levine (although I do not have her e-mail). When I first saw her in December, she mentioned that she had sent some samples to Chia's lab but that she had not gotten them back.

I asked about this during subsequent visits and she somewhat steered me away from it. The last time I was there (a month or so ago), I asked again and she said that the best thing to do is for people to get their own GI doc to do the stuff. She again steered me away from it, as she was not a fan of the treatment (it was either IVIG or IV interferons--I forget which).

The next time I go there, I am going to ask her to refer me to someone. I'd like her to "grease the wheels" with a GI doc so I don't have to deal with convincing someone that ME/CFS is real, etc. I'm sure that she must know someone at Sinai (where she sends people for the tilt test).

is it possible for you to ask her if she has found this virus in any one of the samples she sent away?

i know it's hard to get a question answered sometimes...i wonder if she is steering you away from the issue because she did find some patients with the virus and does not want to be the one to monitor the therapy?

sue

I've read that Dr. Chia has found that the visrus is also in the intestines of normals in small amounts but in people with CFS the amount of virus is huge.

The questions still remains why can some people fight off the virus and others not?

Is CFS and all of these other diseases an immune problem or a virus?

I'm sorry I can't help you--I brought this up to my doc in Jan and he said he wouldn't even test fir it because "there's nothing they can do about it yet". THAT was helpful........

If anyone knows of a tx for this, I'd be grateful to talk to my doc about it.

Thanks, Lenore

interferon beta and gamma and one of the tumor necrosis factor drugs.

if you need k. loomis' email address, it is:

kristin_loomis@hhv-6foundation.org

kelly....thanks for the info! i didnt know they test for all that at georgetown.

dr. lerner says he is not convinced that enterovirus is a real culprit in CFS. i would like to get the test though. i would likely have to go to another american doctor and pay through the nose...so i'll hold off for now.

i am not sure my GI symptoms are really that bad.

please tell me your results when they come back!

dr. demeirleir uses quercitin for enterovirus and dr. chia uses a special kind of oxymatrine i think.

sue:)

I didn't know that they save any part of the endoscopy. I think I had one in 2007. I got violently sick afterwards. I literally thought I was going to die and was to sick to even get to the emergency room. I thought that maybe they gave me an antibiotic afterwards that made me sick. I never found out.

Now I'll go back there if I get the forms to send the slides to Georgetown. Thanks for this info.

I just ordered some oxymatrine and started it today. I don't necessarily believe the contaminated story. I've taken matrine from this same company that I got the oxymatrine from. I asked and they said that people have been ordering from them that have said they have CFS.

Hey Kelly,

thats interesting that K. Loomis asked you about an endoscopy. I had one right before I developed CFS. I wonder if I could get mine sent there too. What prompted her to suggest this for you? I thought you were getting better on Valcyte?

Hi empty2void,

Thanks for all of your info. I didn't know that tissues are saved from biopsies. I had a biopsy of the stomach done in 2006, so now I'm wondering if there's stuff I can also send to get tested for Dr. Chia's tests.

Is Georgetown where Dr. Chia has his testing done; are they working with Dr. Chia? You mentioned that on the form they have various herpesvirus testing; is that testing for the herpesviruses on the biopsy?

Also, I'm imagining the tissue is finite, so do you know if any testing sort of affects the possibility of even further testing later on?

Ms. Loomis sounds really helpful. I'm wondering if I should e-mail her about getting tested too, or if she's getting bombarded with too many e-mails from all of us. :)

And he said he has been communicating with the HHV-6 foundation about HHV-6 & enteroviruses. It seems that the foundation is insistent on finding HHV-6 in the gut. So far, of the 50 samples that they have sent Chia, he has found no evidence of HHV-6 in the gut at all. However, they continue to forward him studies suggesting that HHV-6 in the gut; at the end of one study, it said something like, "although HHV-6 was seen, it seems more like an innocent bystander than an actual culprit."

I'm not sure if there is one culprit to CFS, considering the multiple subsets. However, unlike other doctors I have seen, Chia is open to the idea of enteroviruses not being the culprit if only the evidence would support EBV, HHV-6, CMV, pneumoniae, lyme etc. However, his own son had CFS and after taking high doses of oxymatrine, he is now swimming 90 laps a day. He has had multiple patients return to work after taking interferon-gamma or oxymatrine (including a cop and construction worker, so they returned to physically-demanding jobs, not just sedentary types) I myself have felt about 20% better after taking 1 oxymatrine/day for a month, and 2 oxy/day for the second month. I am also on the methylation protocol so I can't say which is making the most difference.

I have yet to hear anyone "recovered" from the methylation protocol though, and the ones that have gone into remission seem not to have a lot of the genetic polymorphisms that seems more troubling. Therefore, I have decided that I'm going to build up to 4 oxy 2x/day in the next two months and see if I can get a huge boost out of that before I move onto valtrex (I have positive EBV early antigen titers). A part of me wants to do both together, but I'm as curious as Chia is as to whether the enterovirus is the culprit.

Additionally, Chia is studying the potential shift from TH2 to TH1-dominated immune response incurred by the oxymatrine. He's looking for amounts of interferon-gamma and interleukin-2 genes. Therefore, his theory is that the combination of enteroviral suppression and TH1 dominance is what leads to remission.

Chia sent 10 CFS and 10 control (but volunteer and paid) GI biospy samples to try getting a pharm company to invest in an antiviral. However, they turned him down because 3 out of the 10 control samples were slightly positive for enterovirus, rending the difference not statistically significant. However, he then talked to those 3 volunteers or their parents, and discovered 2 of them have consistent nausea and vomiting, and another one had chronic stomach problems and takes antacids daily. Because the volunteers were getting paid $400, they lied about their health. I think what he'll need to do is take a random sample in the future and re-submit these slides. I would be curious to see what shows up then, when the volunteers are truly healthy without stomach troubles or muscular dystrophy.

IMHO, even though the HHV-6 foundation is a huge for us, we have to keep in mind that Dr. Ablashi, the scientific director, has financial ties to a lab in Fairfax, VA that focus on HHV-6. Not saying he has alterior motives, but I personally trust Chia more now simply because he has no financial ties to any diagnostic lab.

Just trying to be a harbinger of information, hope I didn't offend anyone.

-joey

Joey-where did you get your oxymatrine from? Awhile ago PvLady had seen Dr. Chia and he had told her to try matrine. Now he's suggesting oxymatrine. I think they are similar but I'm not sure what the difference is. I bought matrine and took two bottles over several months. I think it helped me but I didn't stick with it. I recently bought a bottle of oxymatrine and just started taking it. I've also been on Valcyte, and antibiotics for Lyme.

I have high HHV-6, high CMV, high EBV, c. pneumonie, and a positive Igenex for Lyme and a sarcoidosis diagnosis.

Difficult to know what to take!

I hope the oxymatrine works for you!

Ria-very exciting that you're taking Ampligen and that it's working so well for you! Continued success to you!! Please keep us posted on your progress.

Hi Kelly,

I emailed K Loomis today. I have emailed back and forth with her previously, before I started on the Valcyte. She was very helpful. I had an upper GI literally right as I was getting sick with CFS, and in the midst of the worst GI symptoms, so I'd suspect if I had an enteroviral infection it would show up. I looked at the pathology report from that time and they just said I had mild GERD and some "atypical looking lymphocytes" on the sample. They of course didn't run it through a viral DNA probe...

I have been on the Valcyte w/ Dr. Lerner for about 3.5 months. I haven't felt any better yet, but I haven't been on it that long. I felt a bit more tired and less hungry when I first started it. I have had to stop it already and take a "break" because my liver enzymes keep going up. Seems odd, since I haven't had liver issues before. Makes me wonder whats up..

A

Thank you everyone for all this information. (I wonder if the researchers have message boards like this because it's really productive discussion bringing everyone together. :) )

(section deleted)

m0joey - That is interesting about Dr. Chia and his communications with the HHV-6 foundation. It's good to hear that he sounds open to ideas. I read his research papers and published correspondences and they are very good. I'm wondering if he has tested any of his patients with the same tests Dr. Montoya uses, specifically HHV-6, EBV from Focus Labs.
[This Message was Edited on 04/03/2008]

Sorry, I didn't see that you deleted your post until afterwards. I had left an earlier page up on my screen. Actually you had said some stuff that was pretty thoughtful advice to apply to life.

They all seem to be focused on their own research. Even Dr. M told me that there is nothing else besides his treatment that can be done (in conventional medicine).

Anyway, from a scientific perspective, there are reasons why it could be possible that some research shows tests positive for HHV-6 in the gut while other researchers like Dr. Chia find his tests negative, but actually both of them could be right.

Hi, I'm interested in this thread because I have been trying all kinds of prescription antacids lately and, since nothing has worked to date, they might do an endoscopy.

I hate to admit it but I'm having trouble with all the acronyms. Can someone tell me what's going on here in 'newbie' terms?

I'm exhausted and the fibro has me completely defeated. I have a hard time researching as much as I would like, and I could really use a cheat-sheet before I go back for more tests. What am I looking for?

Thank you!

vista.....just email ms. loomis at:

kristin_loomis@hhv-6foundation.org

tell her you have fibro, have GI problems, are getting an endoscopy, and need an application and information about where to send the slides for biopsy as per dr. chia's protocol.

she will email you back in little while.

good luck sue

My husband has started to use oxymatrine that we ordered online. He is having some positive results and wants to continue with it. I am concerned about the purity of the product and would like to order from the place that Dr. Chia is using. I would greatly appreciate it if you would provide me with the name and address of his supplier. I assume that it appears on the product that you receive.

Thank you, Patricia

Okay, Ladybug, thank you. I will do that! =)

Questions...

What is the oxymatrine treatment that Dr. Chia uses? Did his son recover after a finite treatment or have to take it continuously? Any thoughts on side effects and toxicity?

Does he have an actual lab/organization? I could not find a Web site for the "EV Med Research" organization mentioned on his research articles. I am wondering if it's possible to get a biopsy specimen tested by Dr. Chia's lab, and how to contact them.

email kristen loomis and she will answer all these questions:

kristin_loomis@hhv-6foundation.org

The oxymatrine that I got through Dr. Chia is from Jinan Mingxin Pharmaceutical Co., Ltd.

-joey

Oxymatrine is "one of the major alkaloid components found in Sophora roots." This is used mainly in China for viral hepatitis, viral myocarditis and skin diseases.

Dr. Chia's son has not been "cured" but has certainly returned to a "normal" lifestyle with intense exercising. He still take 9 oxymatrine tablets daily. In Chia's mind, this drug is very safe with minimal side effects. I've been taking it for about 2 months now, and I have to agree with him. I haven't gotten any toxic feelings, but others might have more side effects. Really depends on each person's sensitivity to drugs/herbs

He does not have an actual lab/organization that I know of; instead he has a patented pax gene test that he does (not sure where). If you wanted to get a biopsy specimen tested by Dr. Chia's lab, it's $250 to have 5 slides tested. You have to somehow have the GI doctor send 5 slides directly to Chia's office

-joey

M Joey,

Do you have any idea if Dr. Chia sells the Jinan oxymatrine to those not under his care?

That brand does not appear to be distributed in the US at this time.

The next time you see him, I would appreciate if you could ask him if he is willing to fill outside orders...

I'm also wondering if anyone on this thread has had success trying to get a gastroenterologist to do the upper gi endoscopy without being accused of being crazy.

Thanks for the info about oxymatrine and testing that you posted a few weeks ago.

And I'm bumping this thread because I am interested in hearing of anyone who has done this test for enterovirus by Dr. Chia.

I had an endoscopy, sent it to Chia and I was a 1+ with full slide staining which made me more like a two plus. (Scores are 0 , 1 , 1+ and most positive for enterovirus is a 2+)

I started taking oxymatrine 3 months ago. When I up the dose from 1 to two to three pills per day, I feel bad for two weeks. When I up it to 4 and 5 I felt terrible and stopped taking it. Then I took a two week break and recovered rapidly to 50% of how I felt before, I also have less depression and different sleep. So I decided to start it up again because I liked the small signs of effectiveness.

hello. do you mean you recovered to 50% of how you were before you got sick?

thank you sue

can someone be so kind and tell me where to order oxymatrine?

best regards

cesare...please email k. loomis. she will answer your email within a few hours.

kristin_loomis@hhv-6foundation.org

Does anyone know which brand or manufacturer Dr. Chia uses for the Oxymatrine and where to purchase it online?

Thanks

Dr. Chia uses a brand from China. However, apparently there will be a brand available within a couple of months in the U. S. that he finds acceptable.

I misplaced the name and company that it will be available through. If I find it, I will post it.

Best, Timaca

I would like to contact Dr. Chia's office to order the oxymatrine and inquire to get the enterovirus testing done. I have googled several times and cannot find his office number anywhere. Help is greatly appreciated. Thanks