Enteroviruses and ME/CFS

[_Kim_]

I'm starting this thread on jackie's behalf. Hopefully, we can move any other posts about Enteroviruses or Dr. Chia's work over here in time.

​

Founded in 2005, EVMED Research has been investigating the role of enteroviruses in Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) and other diseases that are without clear origins. We have also focused our efforts to develop diagnostic tests to idenfify the causes of our patients illness. We will research antiviral and immune modulating therapeutics.

I added these articles to the Library:

Chia 2003 - Diverse Etiologies for Chronic Fatigue Syndrome

Chia 2005 - The role of enterovirus in chronic fatigue syndrome

Chia 2007 - Chronic fatigue syndrome is associated with chronic enterovirus infection

Chia 2010 - Acute Gastritis Associated With Enterovirus Infection

And here is a picture of what a stomach that has enteroviral infection looks like:

Low level of enteroviral RNA was detected in the whole blood.
Staining of stomach biopsy showed extensive enteroviral protein (as shown, 100x magnification).

And here is John K. Chia MD


From the 2007 paper:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Cort has written some good stuff about Oxymatrine in the past, but I don't know if the info is still relevant. Treating Chronic Fatigue Syndrome (ME/CFS): Oxymatrine

And here is Cort's interview with Dr. Chia from 2008: The Dr. John Chia Interview with Cort Johnson (8/08)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

CFS Patient Advocate has an excellent blog entry from February 2010:Focus on Dr. John Chia, Researcher

p.s. Great work Chris!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dr. Chia is on the Board of the Enterovirus Foundation
​

From their website:
​

Symptoms Commonly Seen for Persistent NonPolio Enteroviral Infections

Listed here are common symptoms of persistent non-polio enteroviral infection. This list is from observations made by Dr. John Chia in his Infectious Disease Medical Practice in Torrence, CA.

• Respiratory and/or gastrointestinal symptoms or just flu-like symptoms (fevers, body ache, headache etc.). Few virus infections present with both respiratory and GI symptoms.
• Upper respiratory tract symptoms such as runny and stuffy nose, sinus congestion and pain, sore throat, ear pain, difficulty in swallowing, loss of smell or taste.
• Upper and lower gastrointestinal symptoms such as nausea, indigestion, reflux, abdominal bloating, upper and lower abdominal pain, cramps, constipation alternating with diarrhea.
• Sudden weight loss due to significant stomach problem or decreased caloric intake, or weight gain due to inactivity.
• Numbness in the limbs, muscle twitching and spasms. Some experience facial tingling and numbness.
• Many types of headaches.
• Bone, muscle, and/or joint pain. Foot pain is quite common.
• Chest pain, palpitations and tightness
• Cough, shortness of breath, wheezing
• Low blood pressure
• Heart arrhythmia (irregular heartbeat) or tachycardia (rapid heartbeat)
• Intermittent low grade fever, chills and night sweats.
• Reproductive irregularities and pain.
• Prostate issues and pelvic pain.
• Blurred vision.
• Herpangina (blisters or ulcers over the roof of the mouth). Ulcers may form in the mouth, throat and for females the vaginal/cervix area.
• Recurring yeast or bacterial infections due to a weak immune system.
• Adrenal surge or dysfunction. High cortisol levels or low cortisol levels.
• Psychological problems, anxiety, or depression.
• Mental fatigue when trying to concentrate on tasks. Cognitive issues are very common as are short-term memory problems.
• Sleep disturbance.
• Seizures are rare but do occur.
• Vitamin and mineral deficiencies. Many become anemic.
• Swollen Lymph nodes in the neck and in the armpits
• Rash
• Organs that can be affected by enteroviruses: heart, pancreas, lungs, liver, spleen, colon, ovaries, testicles, epididymis, thyroid, muscles, skin and the central nervous system.
• Enteroviral infections can trigger dormant viruses to reactivate, such as HHV6, Epstein Barr Virus, CMV, and chickenpox– all herpes viruses.
• Children can show symptoms, but parents may not recognize them especially if they are intermittent.
• Children can have many of the same adult symptoms – a flu-like illness, fever, mouth ulcers, abdominal pain, loss of appetite, a rash, headaches, leg pain and weakness, muscle twitching, reflux, cognitive dysfunction and perhaps heart pain and arrhythmias. A diagnosis of chronic fatigue syndrome/myalgic encephalomyelitis in children is possible after three months of illness.
• An enteroviral infection should be suspected if the same symptoms recur every month.

 

[jackie]

Kim...you've earned the Kisses! What a lucky gal I am...full of enteroviruses AND I have my own thread...what more could I want? Thanks! (going to go tell Dr. C...and take all the credit)

 

[CBS]

Kim,

Thanks for the article on enteroviruses. I've been tested both for antibodies as well as having stomach and duodenal tissue samples analyzed using immunochistochemisrty for enterovirus antigens. Both the anti-body and tissue samples were positive. Right now it is not clear what role enteroviruses are playing in my health but while being positive for antibodies is common, being positive for antigens is not common and it is much stronger evidence of an active infection.

The options are limited for treating enteroviruses but my doc and I are discussing the use of Dr. Chia's oxymatrine.

 

[_Kim_]

Kim...you've earned the Kisses! What a lucky gal I am...full of enteroviruses AND I have my own thread...what more could I want? Thanks! (going to go tell Dr. C...and take all the credit)

Jackie, you may have a belly full of bugs but I still luv ya! And you certainly can take credit for this thread.

Kim,

Thanks for the article on enteroviruses. I've been tested both for antibodies as well as having stomach and duodenal tissue samples analyzed using immunochistochemisrty for enterovirus antigens. Both the anti-body and tissue samples were positive. Right now it is not clear what role enteroviruses are playing in my health but while being positive for antibodies is now uncommon, being positive for antigens is not common and it is much stronger evidence of an active infection.

The options are limited for treating enteroviruses but my doc and I are discussing the use of Dr. Chia's oxymatrine.

CBS,

That's the kind of info I was wondering about - what tests to have done and what they mean. I looked into Oxymatrine, but w/o a diagnosis, I felt it was too expensive to try. Thanks for sharing your experiences with us.

 

[jackie]

Kim - I'd like to mention to Dr. Chia that this thread is now available on the Forums....I'm sure he will be pleased. I'll certainly be watching for any new info I might come across to add to it....and I hope others do the same.

And thank you, Kim - as always! - for taking the time to set this up! I couldn't have figured it out!

(Also, I'll be picking up my Equilibrant on Mon (can't make excuses or put it off any longer!)...and I'll post with the costs/details...I THINK it's about 48.00 for 90?)



Thanks....jackie

 

[herry.james]

It could be referral pain from sinuses. I've seen raging toothaches due to congested sinuses, when there is absolutely nothing wrong with the teeth themselves. Keep taking the decongestant and also get yourself a saline nasal spray to use.

 

[consuegra]

Dr. Chia has well documented evidence that enteroviruses play a big part in CFS/ME. Years ago Coxsackie B viruses were suspected of being a major player - but then this idea was discounted and died away. Dr. Chia has proven that enteroviruses stick around and are not transtient and that many of his patients have enteroviral presence in tissue samples. Surprisingly his evidence does not get him much attention -and he goes about his business of treating his patients and doing continuing research. He seems like he is "on his own". For three years he has been invited to London to give lectures at the conference held in May. They like him in the UK. I suppose this is because he has dredged up old forgotten UK research and reinvigorated it. He will speak again May 2010 presenting further research. He has trouble presenting all of his evidence in a forty five minute lecture format. (This conference in London presents in one day the very best of treatment and research. Surprisingly many of the speakers are Americans. This year the list includes Huber, Mikovits, Cheney, Chia, Chapman, Kiimas, and Jason. It is strange that one has to travel to the UK to hear this collection of speakers.)

For those that cannot get the tissue biopsy, the antibody test at ARUP is the test to get. This test is more sensitive and readily available.

It is worth noting the recent evidence that implicates Coxsackie b4 in type 1 diabetes. Coxsackie B is also one of two viruses that is known to attack the thyroid.

Why isn't someone validating Dr. Chia's research and connecting the dots. Is it too obvious, it is too real? It is a shame that Dr. Chia is on his own here, having to forge his own way. He offers a clear shot at getting at one particular element of this illness. For some reason many people want to deal with abstractions and wrestle over substantiating new unknown viruses, efforts that will take years to decipher. Coxsackie B is here now and it is known to cause trouble. The awareness of enteroviral involvement in CFS/ME needs to be heightened. Treatments need to be developed. A target exists. It is just a matter of focusing more attention and pressure. I think it is up to his patients and supporters to give more information about his diagnoses and treatment so that his work can be elevated.

I myself have no personal stake in Dr. Chia and his research beyond the fact that my daughter has consistenty high coxsackie b4 antibodies via ARUP. Most doctors say that this is secondary, that many people have elevated coxsackie b antibodies. Is this true? I don't think so. A few say that this is unusual and could be "significant".

I look at this doctor/researcher (and his wife and son) and I wonder what is going on? Why can't he get traction for his ideas (which are so thoroughly documented). Can someone answer this for me? What is the intellectual research argument that separates him from being embraced by Judy Mikovits and the WPI? They seem to want to reach out. Why don't they reach in his direction? What is the problem? Please tell me.

Chris

http://cfspatientadvocate.blogspot.com

 

[Timaca]

I do have high antibody titers to Coxsackie B3, B4 and B5. My journey on oxymatrine can be found here: http://hhv6foundation.proboards.com/index.cgi?board=antiviral&action=display&thread=200 You will need to sign in to access the posts. I've been on oxymatrine for a year, and it has helped me. I am also battling HHV-6, HSV1 and Cpn.

Chris~ To answer your question, different researchers are interested in different pathogens, and money also causes limitations. Thus, WPIs interest is XMRV. Dr. Chia's is enterovirus. Not everyone can do everything. I do know of a doctor who has taken an interest in both WPIs work and Dr. Chia's work and is doing research on multiple pathogens. So, it is happening.

Best, Timaca

 

[Mithriel]

The work on enteroviruses was never disproved. SW set himself up as an expert, him and his cronies renamed and redefined ME as CFS which was neurasthenia rather than epidemic ME and the work got lost.

The researchers had found that Coxsackie B viral titres were much higher in people with ME than in others.

The VP1 test for enteroviral particles just seemed to fade away even though they were found in lots of people with ME and even in brain tissue from someone who died.

All the enteroviruses, including polio and Coxsackie B are very closely related. It is an accident of history that they have different names. The E. colis are given numbers but are not as similar genetically as the different enteroviruses. In diagnostic labs it is the norm to look for enterovirus species and only then to look to see which one it is.

When the polio vaccine came in much of the microbiological expertise was lost and now many the specialists who were also the defenders of ME have died and we are left with the myth, pushed by the psyches, that enteroviral involvement in ME was disproved.

Some of the interesting papers can be found here

http://www.meactionuk.org.uk/Documented-involvement-of-viruses-in-ME.htm

The way the likes of SW can stand up and say that he would be surprised if viruses were involved in ME when ME was an illness found in epidemics takes my breath away in its audacity. For many years after they invented their own Oxford definition CFS their website said that it was neurasthenia which was common during the nineteenth century but little heard of through most of the twentieth. Yet they were the ones who said ME was CFS They eithe rlied or new nothing about the illness they hijacked.

The new work into enteroviruses is very interesting to those of us who were originally diagnosed with ME long before CFS was invented either side of the Atlantic and who have always had high titres to Coxsackie B.

Mithriel

Mithriel

 

[IntuneJune]

Thank you Jackie and Kim....

Hopefully the volume of the "chatter" is being turned up. Doesn't it seem so? I hope help is not ten years away... as suggested elsewhere...

June

 

[ldhunter]

Timaca,

I am also a patient of Dr. Chia and on Equilibrant. What dosing are you currently at? I'm currently up to 3 a day, but just had somewhat of a relapse. My Coxsackie B titers (1-5) are all 1:64 and I'm feeling pretty run down. I've had a hard time increasing the dose, but feel I need to muscle through.

Enteroviruses are tricky and need not be forgotten! I do worry about the damage they can cause: diabetes, myocarditis, etc... I will be going back to see him in the summer/fall (possibly sooner when he hears about my current bloodwork). I do think this virus is in constant activation with my EBV, HHV6 and XMRV. My focus is to get this virus under control so my body can be strong enough for my next round of treatments. Does anyone know how Gamma infusions react with enteroviruses? Success?

Mithriel, I definitely feel that this virus has played a huge influence on my brain. I now sport a niffty shunt because the pressure was so high in my brain that I was starting to damage my optic nerves and could no longer stand. They called it Psuedotumor Cerebri (false tumor) because basically- they did not know what caused it. Like others, I was told by Dr. Chia that enteroviruses are in tissues, so it did not surprise me that I had a elevated CSF pressure. My liver is also enlarged, probably from the same nasty little bug.

Collaboration of the XMRV/Enterovirus studies would be great, but the cost of the research seems like it would be an issue. I think that at some point that these two areas of interest will come together. Singing the song ~"You can't have one without the other..."

 

[starryeyes]

This is very interesting. For some time now I've felt that my liver and other organs near it may be enlarged.

If XMRV turns out to be the puppetmaster for all these viruses then attacking it with medicine should help our immune systems fight these other viruses. I think that's what the WPI is concentrating on. This is what happens with AIDS.

 

[Gerwyn]

This looks like a list of all of the symptoms produced by different enteroviruses combined.the various echos cocksackies HEVA etc No one enterovirus produces all these symptoms.

 

[jackie]

My dr. mentioned once that most of his patients had multiple enteroviruses present. I think there are tests now for the coxsackie's but only 5 or 6 of the echo's can be detected by antibody tests? This is one of the many reasons testing is so difficult (it seems that every few years new tests are developed for the remaining ones)...and now they're using stomach biopsies. I have (and have had for years) most of the symptoms on the list (however, night sweats are becoming less frequent, while sinus probs are increasing)
I'm also one of those with chronic shingles (rash present all the time with the blistering phase every few weeks...over two years now). I've also recently developed HSV1...to add to my "collection".

(BTW...had an ultrasound last year that showed an enlarged liver, like others here. also...anybody else have very elevated c-reactive protein number? am curious as to any connection)

 

[Hope123]

My question for those who have enteroviral titers or positive staining on tissue samples: did you have stomach/ gut issues?

So far, I have had no GI issues (knock on wood!) compared to many people I know. I have limited enteroviral antibody testing (6 types) but they're all undectectable. I wonder if people with CFS and more IBS issues tend to have enterovirus than those who do not?

(I'd also add that those monkey studies showed XMRV clustered in the gut long-term.)

 

[Timaca]

ldhunter~ I am not on Equilibrant, I'm on oxymatrine that comes from China. I take 2 tablets, twice a day, which I *think* amounts to 400 mg oxymatrine a day. B3 has dropped from 1:320 to 1:40, then back up to 1:160 (I guess it likes to dance around a bit), B4 has dropped from >=1:640 to 1:80, B5 from 1:160 to 1:20. I'm tested at ARUP lab. Seems like you must be tested at a different lab to have a titer of 1:64......

Hope123~ I do have GI pain...sometimes it feels like my stomach is "paralyzed"....does not want to eat. Other times, my stomach or intestines just hurt.

Taking the oxymatrine has helped me. March was my best month in years. I've been on it for 1 year. Am I well? No, but definitely improved. I still have to knock down a few other pathogens...HSV1, and Cpn and possible HHV-6 (again).

Best, Timaca

 

[jackie]

Hope...I do have "gut" issues. I never believed that I had "true" IBS (even though I had varying problems even before my eventual me/cfs dx). I did experience some ibs-like symptoms...but it was more stomach /intestinal PAIN...such as shooting /stabbing pain in my gut.

I've also had a chronic nagging queasiness (which I make an effort to try and ignore - interestingly I notice it a lot as I'm just waking up...or drifting off to sleep....an awful sensation!)
Occaisionally full-blown nausea and I have to take a prescription med for relief (some of this has increased since starting acyclovir 4 yrs. ago as well as completely losing my appetite and an absolute revulsion to the thought of certain foods! Too bad I have not seen any weight loss from this.)

Timaca...Much to dr. chia's dismay...I have put off starting first Oxymatrine and then Equilibrant for over 3 yrs! In fact...I still have my first prescription for Oxy from a source in Kowloon dated 3 yrs ago that I never ordered! And I promised to pick up my first box of equilibrant last week and haven't done so!

I have such a strong feeling that I will become even MORE ill (at least at first) and I can't bear to start that up! I know I'm acting like a cowardly baby about this...but when you feel so sick all the time anyway...sometimes ANY more "ickyness" just pushes you over the edge!

Pretty silly as it probably won't be much worse than the high doses of acyclovir at the beginning. It's encouraging that it has helped you...did you have any additional GI distress when you began? (I realise that I can stop at any time...and I intend to start at a very small dosage (1/2).

(I'm somehow managing to care for my elderly mother (92)...sort of from my bed..if you can imagine that! And I worry about getting worse at the beginning and having no one to help us...these are the things that weigh on my mind. If it was just me alone...I'd have already been experimenting. I was afraid of acyclovir at first...now I can't survive without it...maybe this will turn out fine.)

IDHunter...so sorry to hear of what you've been through. I'm shocked regarding your need of a shunt! And to think of how many people view this illness...as something harmless and, although "inconvenient"....benign! If they only knew of the deadly potential....! Dr. was saying the other day (after some further studies) that they are now realizing just how dangerous and involved these viruses can be.

Can you tell me when you started the equilibrant (I know everyone reacts differently, but any early side effects?...and what might your next treatment be? IVIG?)

I have a niece taking the equilibrant for nearly 3 months now...and she simply can't progress beyond 1/2per day without a major exacerbation of the WORST of her symptoms!

good luck all and thanks!........jackie

 

[Timaca]

Jackie~ Yes, I did get worse upon starting the oxymatrine. You can read my journey here: http://hhv6foundation.proboards.com/index.cgi?board=antiviral&action=display&thread=200 You will need to sign in to read the posts.
Best, Timaca

 

[TheMoonIsBlue]

Anyone still taking Oxymatrine? (Equilibrant?)

If so, how are you doing? Been thinking about this product for quite a while....tested positive for Coxsackie B4. Would like thorough enterovirus testing, but that requires doctors cooperation.

Any long term users of Equilibrant, are you feeling any better/worse/no change?

Thanks!

 

[jstefl]

I have been on oxymatrine since March of 2009. I am taking the White Tiger brand that is available at a reasonable cost from several different suppliers. I get mine from Accupuncture Atlanta, ordering online, and have been happy with them so far.

Before I started, I had my duodenum tissues tested by Dr. Chia, who found greater than 50% of the cells contained enteroviruses. Previous to this testing, I had a portion of my colon removed because of a persistance of tubular adenomas.

After starting the oxymatrine, I had my blood sent to ARUP laboratories, and found antibodies to Coxsackie B4, and B5, and Echovirus 11.

I believe that my enterovirus infection predates my CFS by many years. In one of his London talks, Dr. Chia talked about the ways he believes the enteroviruses are spread. I grew up in the farm country of central Wisconsin, drinking well water. I now believe that my grandfathers well was too close to the septic field, causing the drinking water to be contaminated. My grandfather died fiom stomach cancer, and my father and his brother both developed CFS, and died prematurely.

I started having stomach distress at an early age. For many years, I was able to control things with the occasional use of antacids. My CFS started in 1990, and I noticed a slow increase in stomach distress after that. By 1992, I was eating yogurt daily to control things. I had occasional diarrhea, but at first it wasn't a problem. As time went by, the diarrhea and stomach distress became much worse. I was living on two Zantac a day, and the diarrhea was constant.

After starting oxymatrine, I didn't notice any changes for a very long time. I the last month or two, I have noticed a large decrease in my diarrhea, and have really cut down on the Zantac. The mechanism by which oxymatrine works isn't known. Dr. Chia thinks that it acts as an immune booster. It doesn't seem to kill the viruses directly.

I am very encouraged by the results that I have noticed in the last few months. I most likely will continue taking the oxymatrine the rest of my life, or until a real medicine comes along.

John