• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Testing for coxsackie virus. How?

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
I remember getting a severe infection to a coxsackie virus when I was 11.

I just realized that the chronic nausea started right after that episode.

I think I also had it when I was an infant. My mom said that i was very sick. Very high fever.

Now, i'm stuck with a chronic sore throat and upper respiratory problems but my doctor doesn't know why.

I just put two and two together. Could it be a chronic infection to a coxsackie virus?

How can I figure it out? Are there tests being done for this? If so, are they conclusive or will i be wasting my time and energy?
 

shannah

Senior Member
Messages
1,429
Here's a link to the Enterovirus Foundation. Dr. Chia is connected to it. 'Timaca' seems to know quite a bit as well if you can contact her.

I looked into it maybe 3 years ago (in Canada) as I was already having biopsies on stomach and colon. It was all going to be much too complicated at the time. Maybe it's easier now.

http://www.enterovirusfoundation.org/index.shtml
 

floydguy

Senior Member
Messages
650
My testing through Klimas was just a blood test from Quest. Maybe Timaca can clarify when biopsies are needed. It seems based on the test from Quest that Coxsackie B is a problem for me and Klimas is trying to address it. Unfortunately, there don't appear to be a lot of treatments. She mentioned the possibility of Oxymatrine which is a Chia inspired treatment I believe.
 

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
Dr. Chia definitely believes that enterovirus infections are a big part of CFS. He has a website at www.evmedresearch.com. EVMED (Dr. Chia) will test tissue samples for enteroviruses and send you a picture. He stains the tissue sample and takes a picture using a microscope. The cells with viruses show up as dark spots. By looking at the dark spots, he can determine approximately what percentage of cells are infected. He can not tell what type of enterovirus that is present. As I understand it, there are over 100 different enteroviruses, and his stains won't work on all of them. I had a stomach tissue tested by Dr. Chia, and found that more than 50% of the cells contained viruses.

After I had this testing done, blood tests became available that will identify the type of enterovirus. I have learned that all labs are not equal. I asked my doctor at the Mayo Clinic to send my blood to ARUP Laboratories for testing. They sent the blood to Focus labs instead. The tests came back negative, which I knew wasn't true. After a lot of complaining, they agreed to draw more blood and send it to ARUP. The results came back showing three different enteroviruses at high levels. See www.aruplab.com for details.

The tissue tests by Dr. Chia is less expensive, but getting the small piece of tissue is very expensive to obtain. As I recall, getting the sample cost about $ 15, 000.00. The test itself was about $ 250.00. The ARUP tests cost me about $ 1,000.00. That makes the blood test a lot more affordable.

I have been taking Oxymatrine for just over two years now. For the first year and a half, I didn't see any difference. After that, things have been slowly changing for the better. I used to need to take Zantac once or twice a day, and had constant diarrhea. Now, I almost never need the Zantac and the diarrhea is slowly getting much better. I don't take the compound that Dr. Chia developed. I am taking the White Tiger brand that I get online at WWW.acuatlanta.net. It is pretty affordable at about $ 25.00 for 84 tablets. I take three tablets a day.

My complete story as well as Timacas is told on the HHV-6 website. The exact tests that you want are identified there, so I won't repeat it all.

John
 

floydguy

Senior Member
Messages
650
Dr. Chia definitely believes that enterovirus infections are a big part of CFS. He has a website at www.evmedresearch.com. EVMED (Dr. Chia) will test tissue samples for enteroviruses and send you a picture. He stains the tissue sample and takes a picture using a microscope. The cells with viruses show up as dark spots. By looking at the dark spots, he can determine approximately what percentage of cells are infected. He can not tell what type of enterovirus that is present. As I understand it, there are over 100 different enteroviruses, and his stains won't work on all of them. I had a stomach tissue tested by Dr. Chia, and found that more than 50% of the cells contained viruses.

After I had this testing done, blood tests became available that will identify the type of enterovirus. I have learned that all labs are not equal. I asked my doctor at the Mayo Clinic to send my blood to ARUP Laboratories for testing. They sent the blood to Focus labs instead. The tests came back negative, which I knew wasn't true. After a lot of complaining, they agreed to draw more blood and send it to ARUP. The results came back showing three different enteroviruses at high levels. See www.aruplab.com for details.

The tissue tests by Dr. Chia is less expensive, but getting the small piece of tissue is very expensive to obtain. As I recall, getting the sample cost about $ 15, 000.00. The test itself was about $ 250.00. The ARUP tests cost me about $ 1,000.00. That makes the blood test a lot more affordable.

I have been taking Oxymatrine for just over two years now. For the first year and a half, I didn't see any difference. After that, things have been slowly changing for the better. I used to need to take Zantac once or twice a day, and had constant diarrhea. Now, I almost never need the Zantac and the diarrhea is slowly getting much better. I don't take the compound that Dr. Chia developed. I am taking the White Tiger brand that I get online at WWW.acuatlanta.net. It is pretty affordable at about $ 25.00 for 84 tablets. I take three tablets a day.

My complete story as well as Timacas is told on the HHV-6 website. The exact tests that you want are identified there, so I won't repeat it all.

John

FYI - Focus is part of Quest. Mine came back very high. I am hoping Klimas knows the ins and outs of proper enterovirus testing. In any event, my treatment will probably be the same: Oxymatrine. Too bad it took so long for you to notice a difference.
 

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
Hopefully, you won't have as much virus, and the oxymatrine will work faster. Dr. Chia found that the oxy only works on about half of the people that he has used it on. He doesn't really know how it works, it is not an antiviral. He is thinking that perhaps it is an immune stimulator.

I have heard that Dr. Chia is suggesting that Cimetidine ( generic Tagamet ) is synergistic with the oxy. I have been taking the Cimetidine along with the oxy for a year now. I was hoping that it would work faster also. I wish I could find a doctor that would do the tests on a regular basis. The ARUP tests show the titers, which would show the progress being made. Without more testing, I really don't know for certain how much progress I am making.

I had an experience in 2005, that convinced me that the gut plays a major role in CFS. I went to Mayo for a colonoscopy. They found a polyp and removed it. For a week or so, I didn't notice ant change, but then I started feeling better every day. I was stronger, sleeping better, and my headaches were almost gone. Every day for the next two weeks showed improvenents. Then, in one day, I was back to my normal sickly self. I believe that the colon cleansing process was what changed things for me. Unfortunately, I have never been able to repeat this improvement.

John


Dr. Chia has been working with drug companies for several years now, trying to develop a real drug to treat the EV's.
 

Sing

Senior Member
Messages
1,782
Location
New England
Hi John,

What is the HHV-6 website that your story is on? I am very interested, as I think, as with Boule de feu, my problems started with a severe enteroviral infection as a young child.

Thanks,

Sing
 

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
See WWW.hhv-6foundation.org. You will have to register with a name and password. The click on patients, and then patient forum., shown in red. When you are at the discussion page, click on antiviral treatments, and then the fifth item down, oxymatrine journeys.

My valcyte experiences are also detailed there.

This site is an excellent resource for information on HHV-6 viral infections. In addition to the enterovirus problems, I also had HHV-6, EBV, CMV, and Parvo B19. I am fortunate that the Valcyte took care of these four, leaving me with the EV problem, and possibly XMRV, which I have not tested for yet.

John
 

Francelle

Senior Member
Messages
444
Location
Victoria, Australia
The tissue tests by Dr. Chia is less expensive, but getting the small piece of tissue is very expensive to obtain. As I recall, getting the sample cost about $ 15, 000.00. The test itself was about $ 250.00. The ARUP tests cost me about $ 1,000.00. That makes the blood test a lot more affordable.

Unbelievable! How can it be so expensive to get a biopsy of stomach tissue during Gastroscopy/Upper Endoscopy? I've had small samples of stomach tissue taken during Gastroscopy and the only cost apart from the procedure itself ($200 out of pocket) is a small cost for the pathology/histology analysis.

My biopsy was not for checking Enterovirus status but a biopsy for something else but nevertheless......
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
Wow! I never thought I would get so much info in such a short time. This forum is the best! =-)

Two things are coming up:
1. I really don't want to go through a stomach biopsy again. Last time, I had a severe relapse.
2. If I do test positive, there are no cure yet. So, is it really worth it finding out?

I read that if it is a "chronic" infection, the blood test will not detect the coxsackie virus since it is not in the blood anymore. Is it true?
 

Timaca

Senior Member
Messages
792
You can consider testing at ARUP lab....looking for antibodies. Here is some info: http://chronicfatigue.stanford.edu/infections/entero-tests.html If you have had one stomach biopsy there is a chance that the tissue is stored at the lab that looked at it. (Tissue can be stored for years.) So, go on a hunt for that tissue, and if you find it, then send it to EV med research for evaluation.

Oxymatrine has helped me and a couple of people I know. I'm not well, but certainly in a better place than I was.

I do (did) have high antibody titers to Coxsackie B3 and B4. They dropped with the oxymatrine to normal levels (and I felt better). They increased again when I relapsed, (which was very interesting)....now they are dropping again. I do have a chronic infection, and the antibodies are being found in the blood.

Best, Timaca
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
Thank you, Timaca.

I doubt that my stomach sample has been kept, but we never know.
I must consult for blood in my stools so I will find out with my GI when I see him again.

Maybe it would be worth it to do the blood test first. If it is negative, I could ask for a biopsy.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
Hopefully, you won't have as much virus, and the oxymatrine will work faster. Dr. Chia found that the oxy only works on about half of the people that he has used it on. He doesn't really know how it works, it is not an antiviral. He is thinking that perhaps it is an immune stimulator.

I have heard that Dr. Chia is suggesting that Cimetidine ( generic Tagamet ) is synergistic with the oxy. I have been taking the Cimetidine along with the oxy for a year now. I was hoping that it would work faster also. I wish I could find a doctor that would do the tests on a regular basis. The ARUP tests show the titers, which would show the progress being made. Without more testing, I really don't know for certain how much progress I am making.

I had an experience in 2005, that convinced me that the gut plays a major role in CFS. I went to Mayo for a colonoscopy. They found a polyp and removed it. For a week or so, I didn't notice ant change, but then I started feeling better every day. I was stronger, sleeping better, and my headaches were almost gone. Every day for the next two weeks showed improvenents. Then, in one day, I was back to my normal sickly self. I believe that the colon cleansing process was what changed things for me. Unfortunately, I have never been able to repeat this improvement.

John


Dr. Chia has been working with drug companies for several years now, trying to develop a real drug to treat the EV's.

We share something in common. They also found a polyp. But, I got worse after it was removed.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
Dr. Chia definitely believes that enterovirus infections are a big part of CFS. He has a website at www.evmedresearch.com. EVMED (Dr. Chia) will test tissue samples for enteroviruses and send you a picture. He stains the tissue sample and takes a picture using a microscope. The cells with viruses show up as dark spots. By looking at the dark spots, he can determine approximately what percentage of cells are infected. He can not tell what type of enterovirus that is present. As I understand it, there are over 100 different enteroviruses, and his stains won't work on all of them. I had a stomach tissue tested by Dr. Chia, and found that more than 50% of the cells contained viruses.

After I had this testing done, blood tests became available that will identify the type of enterovirus. I have learned that all labs are not equal. I asked my doctor at the Mayo Clinic to send my blood to ARUP Laboratories for testing. They sent the blood to Focus labs instead. The tests came back negative, which I knew wasn't true. After a lot of complaining, they agreed to draw more blood and send it to ARUP. The results came back showing three different enteroviruses at high levels. See www.aruplab.com for details.

The tissue tests by Dr. Chia is less expensive, but getting the small piece of tissue is very expensive to obtain. As I recall, getting the sample cost about $ 15, 000.00. The test itself was about $ 250.00. The ARUP tests cost me about $ 1,000.00. That makes the blood test a lot more affordable.

I have been taking Oxymatrine for just over two years now. For the first year and a half, I didn't see any difference. After that, things have been slowly changing for the better. I used to need to take Zantac once or twice a day, and had constant diarrhea. Now, I almost never need the Zantac and the diarrhea is slowly getting much better. I don't take the compound that Dr. Chia developed. I am taking the White Tiger brand that I get online at WWW.acuatlanta.net. It is pretty affordable at about $ 25.00 for 84 tablets. I take three tablets a day.

My complete story as well as Timacas is told on the HHV-6 website. The exact tests that you want are identified there, so I won't repeat it all.

John

15,000.00???
 

jstefl

Senior Member
Messages
250
Location
Brookfield, Wisconsin
Actually, a great deal of money has been spent on my colon.

Things started with a PET scan, which showed a hot spot. A follow up colonoscopy found and removed a polyp.

A year later, another PET scan showed another hot spot. This time, they did not find a polyp during the follow up colonoscopy, so I ended up having the upper part of my colon surgically removed. They found the polyp in the section that was removed. I am not sure why they couldn't find it during the colonoscopy, they knew it was there and really looked for it.

The GI specialist at Mayo was completely clueless about entroviral infections. This was three years back, but I found plenty of information on the internet at the time. I am not sure that it can be proven yet, but I believe that the polyps were caused by the entroviral infection. I later had a piece if the polyp sent to Dr. Chia, who found that the polyp was infected.

John
 

rlc

Senior Member
Messages
822
Hi all heres some more studies on entro viruses and ME done in the eighties, unfortunately the work that was being done on this came to a halt with the invention of CFS, which is a shame as it was showing a lot of promise of finding the cause of ME, hopefully at some stage the likes of Dr Lipkin will turn their attention to this area because the modern viral detection techniques could probably work this out very quickly.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1972867/pdf/jroyalcgprac00078-0017.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1291624/pdf/jrsocmed00161-0023.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429637/pdf/postmedj00163-0031.pdf