BINGO Positive Enterovirus what next?????

[weyland]

Echovirus and Coxsackie B are enterovirus serotypes grouped under the Enterovirus B species. They are genetically related, yes.

 

[kevin Feldman]

Many thanks again for ping ponging with me you just solved a 12 year mystery. You may have made me recipient of the 2015 Patient Pathologist Award.
I got this virus in early 2003 flying back to Hanoi from Saigon, I drank a dragon fruit cocktail before boarding the plane. While on the short flight I started to sweat, chills, shake , stomach was exploding I left me seat started back to the lavatory as I approaced the door i heaved all over the carpet..I mean heaved a puddle. I never have thrown up in my life just rare thing. GO back tmy seat, on limo ride home my head is resting on my engineers lap, I get to my hotel where my staff found me the next morning in the bathtub color of green. The take me to Japansese clinic hook me up to saline and bring me around few hours later I get up and leave, weak but alive. I followed up a set of pills for 7 days and got progressively stronger and better...in 2011 dec I have open heart bypass surgery , I get a post op bacteriin f

 

[kevin Feldman]

oops hit button ..post op sternal bacterial infection "entero-bacter clochae" ( any relation to entero virus?) in any event only 1.5% of men get this post op and i git hit with IV antobiotics for 4 months before they operatied to remove sternal wires...when i got infection i went back to hospital for 3 weeks of hell , 2 more open chest surgeries, wound vac, i never realy got my strength back, on dec18 2013 after having a stressful trading rout in the stock market, I came down with shingles but didnt get meds for 6 days wjich is too late, , few weeks later as teh skin vesiclles subside I develop large bilateral ankle swelling and a monster viral flu that lasted 60 days with coughing nite and day and stuffed head nothing would help this flu, I lived on bronkaids , I had 3 weeks of laryngitis also something I never had in my life...by march 31 the lflu was subsiding but left me very weak, as i removed a wrap to help edema go down I begain a peripheral neuropathy in left toe that spread all over , over next few weeks I had seizuresm couldnit walk or tocuh ground with feet or anjkles couldnt walk for weeks had to relaern gait in therapy pool if i keep going it will fill the entire forum long story shorrt after getting provisonal Dx for psiriatic arthritis and cvid ( both a worst of class case) I get coma weak wave and ataxia and that was it , I stopped chasing b12 d and all that and came across cfs ( i never knew what it was) and within 30 minutes it was the easiets DX to make...it accounted for all the crazy symptoms that were getting progressively worse my onset was aprik 10, 2014 Is it possible I got the persisten echo 30 in vietnam in 2003 it stayed but I was younger and immuno stronger , the bypass surgery 2011-12 shook things up and then stressed and immunocompromised the echo latent reactivates , puts me down immuno low, shingles erupt, in heels of shingles echo monster virus erupts ---does that sound plausible??

 

[weyland]

It's hard to say after the fact but it seems possible. CVID might make this more of a possibility. Antibodies are what keep enterovirus infections at bay. Are you a candidate for immunoglobulin replacement do you know?

Here is a list of common symptoms seen with these persistent infections.

 

[kevin Feldman]

Yes mr weyland ( are u in UK?) such a productive chat with you ...please keep it coming yes I was dx cvid 3/18/15 i begain subq hyquvia 22g per months april this coming thursday will be my 4th monthly treatemnt as soon as I was dx cvod i stopped enbrel and mtx i was on for 4-7 weeks i just couldn[''t get my arms around this sense of self "modulation" ie psaA is autoimmiiune hyper immune system ( inflsmmatory) mtx and enbrel ( tnf-a inhibitor) are suppressing immune and then I have cvid which is immunedeficient but more than that likely dysfuctional which i learn more of from the cfs info...my problem now is dealing with cfs and taking hyquvia i have very painful ankles where i have enthesitis ( where tendon inserts to bone) don't know how much u know of this but its more painful than rneumatoid which inflames the outer synovium, enthesistis is off the chart . i have multiple joint erosions in hands and periostitis in calcenieous ( heels) so running and staying on feet alot os a problem...the question is what will i do to treat the psA , surely of left untreated my joints will degenerate badly and that can't be reversed

 

[kevin Feldman]

It's hard to say after the fact but it seems possible. CVID might make this more of a possibility. Antibodies are what keep enterovirus infections at bay. Are you a candidate for immunoglobulin replacement do you know?

Here is a list of common symptoms seen with these persistent infections.

yes well that's quite a catch all list -anybody who would say they have most of those symptoms would be branded a hypochindriac..well I have approximately 90% of them most documented

 

[kevin Feldman]

It's hard to say after the fact but it seems possible. CVID might make this more of a possibility. Antibodies are what keep enterovirus infections at bay. Are you a candidate for immunoglobulin replacement do you know?

Here is a list of common symptoms seen with these persistent infections.

so what came first in the circle, did I get igg (and subclass) and iga deficiency first and that allowed the the ev and shingles or did the ev come and knock down the immune system and alllow shingles to come..did ev cause cvid and mecfs? or did cvid cause ev and cfs? I tend to thing the cvid is subset of cfs and ev was the trigger to cfs

 

[Jon_Tradicionali]

This is a little different. Dr. Chia's histopathology test shows direct evidence of active viral expression and persistence associated with the formation of double stranded RNA. This is a big step above using antibody tests to try to link disease with herpes antibody titers. This isn't just Dr. Chia's pet theory either, it builds on the work of many British investigators from the past.

Pridgen found CP1 in 29/30 FM patients using stomach biopsy samples. This is the clearest sign of an active infection. Chia's initial findings of enterovirus infection in CFS patients also came from stomach biopsy samples.

My point was, it all depends on what you are looking for and where you are looking for it.

 

[kevin Feldman]

I have ME/CFS ( same thing as FM) we are looking for active virus any type what else would we be looking for , FM has shown the virus in muscle cells as well I think,

 

[Jon_Tradicionali]

I have ME/CFS ( same thing as FM) we are looking for active virus any type what else would we be looking for , FM has shown the virus in muscle cells as well I think,

Ok

 

[kevin Feldman]

This is a little different. Dr. Chia's histopathology test shows direct evidence of active viral expression and persistence associated with the formation of double stranded RNA. This is a big step above using antibody tests to try to link disease with herpes antibody titers. This isn't just Dr. Chia's pet theory either, it builds on the work of many British investigators from the past.

thanks for the heads up on pridgen and lerner please send any reference links you know of , Im intererested...I am guessing my brand is Cox B2 or Echo 30 one of those 2 ( are they one and the same) the viral naming is confusing..It s costing me $1,300 to find out

 

[weyland]

so what came first in the circle, did I get igg (and subclass) and iga deficiency first and that allowed the the ev and shingles or did the ev come and knock down the immune system and alllow shingles to come..did ev cause cvid and mecfs? or did cvid cause ev and cfs? I tend to thing the cvid is subset of cfs and ev was the trigger to cfs

It's hard to say. What I do know from the medical literature is that individuals with hypogammaglobulinemia often develop severe, body wide persistent active enterovirus infections. Usually these individuals end up with meningoencephalitis because there aren't any neutralizing antibodies preventing the virus from reaching the brain. Giving these individuals IVIG can sometimes, but not always, help with the infection. I also know, from personal experience, that you can develop these persistent infections even with totally normal immunoglobulin levels. It's not universal, but people with ME often do have IgG1 and IgG3 subclass deficiencies. What I don't know is if these are preexisting or develop after ME onset. Perhaps nobody knows.

I don't know what would happen if you had a persistent infection and then developed CVID after the fact. It's possible that this would allow the virus to become viremic again and this might allow the infection to spread and worsen.

I am guessing my brand is Cox B2 or Echo 30 one of those 2 ( are they one and the same) the viral naming is confusing

They are not the same, they are different serotypes of enterovirus, but they are somewhat closely related genetically. Both coxsackie B and echovirus have been implicated in triggering ME.

 

[kevin Feldman]

It's hard to say. What I do know from the medical literature is that individuals with hypogammaglobulinemia often develop severe, body wide persistent active enterovirus infections. Usually these individuals end up with meningoencephalitis because there aren't any neutralizing antibodies preventing the virus from reaching the brain. Giving these individuals IVIG can sometimes, but not always, help with the infection. I also know, from personal experience, that you can develop these persistent infections even with totally normal immunoglobulin levels. It's not universal, but people with ME often do have IgG1 and IgG3 subclass deficiencies. What I don't know is if these are preexisting or develop after ME onset. Perhaps nobody knows.

I don't know what would happen if you had a persistent infection and then developed CVID after the fact. It's possible that this would allow the virus to become viremic again and this might allow the infection to spread and worsen.


They are not the same, they are different serotypes of enterovirus, but they are somewhat closely related genetically. Both coxsackie B and echovirus have been implicated in triggering ME.

Thank you weyland please note my private conversation post

 

[Zapped]

@Feldman. I must commend your depth of sleuthing and understanding but I am at a loss as to your potential application(s). You have covered one boatload of funneled research in this thread thanks to the detailed scientific translation by the obviously very knowledgeable Weyland.

I think many members from here and around the web ought to read the material. It certainly offers a well molded ball
of clay in one place, germane to the plight of at least one camp of PWCs.

I hope you find success and relief as you undoubtedly will keep up the pursuit of pertinent knowledge (perhaps). However, please be advised: there are no published 'cures' for ME/CFS that I nor others have come across nor validated publicly in
the last 25 years of piecing together the cumulative research (results) as it occurred. [FWIW, I started with my own relatively limited knowledge base circa late 80's and I arrived at the same conclusion on a personal basis as posited in your opening query - a polio virus was seemingly at the bottom of all this (giving due credit to the likes of Dr. Byron Hyde, John Chia, and many et als) after interpreting their work as best I could at the time.]. You seem to start from a much elevated level of training or understanding which may shortcut your journey of getting the bigger picture (contained within
this and other dedicated forums on ME/CFS.

Since you claim to be a newbie, while I hope you can adapt the succinct analytic explanatory science successfully to your case be aware that other very bright people have had access to the above data/information as well, yet again there remains no published 'cures' for ME/CFS! I offer this not to dissuade your enthusiasm but as a fallback cushion for you to consider if you hit the same static wall as other PWCs - and not suffer a catastrophic meltdown.

As your wallet will tolerate you can test ad infinitum and get elaborate analyses from the most esoteric of 'camps' but end up where you are now, but with less funds, jaded and frustrated; or you may end up relieved of our common demons.
Caveat Emptor! What would you otherwise do with all this (known) science - synthesize new applications, sic for
mice, men or Petri dishes; or on paper?

I for one am re energized by your apparent resolve. As you intimated, should you divert into slopsistic privacy in seeking the elusive cure please at least apprise those of us here who are now aware of your dilemma of your progress.

 

[kevin Feldman]

@Zapped You are very gifted prosespeaker. I have a friend like you but he doesn't have ME/CFS . I gather you do. I wish I had you to better describe the indescribable to some of my providers, the only words I could come up with to describe the coma weak waves were:" I feel the weight of gravity in my fingers" Oh I also created a new descriptive neuropathic word by conjugation: stinging + tingling = stingling.
I have had a 16 month run that I would never believe a human being could have and knowing what I do now I know alot of you have had humdingers, but man I have been crawing on my garage floor in seizures, lost my ability to walk, asked the lord to take me and he wanted no part of it...so much more its both fascinating and horrifying. Someday ,If I achieve and lasting improvement goal which I suspect I will not I would like you to write my memoirs. My memoirs is more signifcant not for surviving the maladies and illness, but for surviving the medical industrial pharmaceutical complex. I have learned survival tricks because going through provider hell came closer to killing me than anything else. I thumbed my nose at rules and policies, I demanded staff forget about tomorrow and get me test results by 5:30PM when I took it at 3:30PM, I used nurses to pester Drs 3 times within 45 minutes until they relented to sign a script on a biologic that I had already had preapproved in 3 business days having pharma company foot the bill

 

[kevin Feldman]

@Zapped You are very gifted prosespeaker. I have a friend like you but he doesn't have ME/CFS . I gather you do. I wish I had you to better describe the indescribable to some of my providers, the only words I could come up with to describe the coma weak waves were:" I feel the weight of gravity in my fingers" Oh I also created a new descriptive neuropathic word by conjugation: stinging + tingling = stingling.
I have had a 16 month run that I would never believe a human being could have and knowing what I do now I know alot of you have had humdingers, but man I have been crawing on my garage floor in seizures, lost my ability to walk, asked the lord to take me and he wanted no part of it...so much more its both fascinating and horrifying. Someday ,If I achieve and lasting improvement goal which I suspect I will not I would like you to write my memoirs. My memoirs is more signifcant not for surviving the maladies and illness, but for surviving the medical industrial pharmaceutical complex. I have learned survival tricks because going through provider hell came closer to killing me than anything else. I thumbed my nose at rules and policies, I demanded staff forget about tomorrow and get me test results by 5:30PM when I took it at 3:30PM, I used nurses to pester Drs 3 times within 45 minutes until they relented to sign a script on a biologic that I had already had preapproved in 3 business days having pharma company foot the bill

oops acciddental send zapps send me a private post with email and Ill send you some docs, bottom line Im so pissed , scared as hell, depresssed enough to think about some really bad endings, I overcome that by pressing the only way I know. The same faulted nature that got me into this mess is the same one that got me thru the gauntet to figure out what is going on. I hate Drs, mediclal appointemnts in the last year I have has 141 insuarble events ( that means dr visit, test, consult, therapy etc) and probably another 40 uninsurable events ( private brain clinics, wellness IV infusion therapy, acupuncture , biomagnetic pairing ) . That means I have had my health to deal with once every 48 hours....so abnormal. The truth is I don't follow rules , I never have.I don't take my vitamins when I should, sleep when I should all the lifestyle thnigs to get better and I don't see how I ever will short of moving to tibet to be a grasshopper asprring to monkhood. Just the sound of my wife;s voice shoots my sympathetic ns of its pilot light to full flame on. I have heard that 50-60% of the "treatment" ( yes I am aware there is no cure) is non prescriptive---internal peace, silence, ambivalence to the world around you, tuning out. So, for now ( now meaning the next 6 months) Ill continue my Don Quihote quest for a redemptive cure. I am at war. Its a civil war of me against myself and myself keeps kicking my ass. I and me need to win some battles here , I

 

[kevin Feldman]

I started i April 2014 ( with what I later found out was brain fog) to read up on what was going on After my first few Dr visits and normal tests I knew the only person who will roll up the sleeves to do what it takes to figure this out was me and I knew absolutely not one medical term except coronary By pass which i had 3 years earlier. So I made use of my insomnia and read thru the night-at first wiki of every other word, reading a page 5 times and remembering and learning nothing. Every 3 weeks before I could get a grip on the MSK system, Im onto the endocrine system and then the every few weeks another system domain. It took months before I accumulated a critical mass glossary to retain anything. So no , expecially at the beginning I just went on my gut and aversion to anything the Drs were saying. I also needed to understand my own symptoms I had concurrent , overlapping symptoms , the noise of one masked the other ie perihperal neuropathy feet and ankles, enthesitiis achilles tendon and ankle joint, periostitis calceanous and more same locality). So no I have no real knowledge but I did what I always did when I was at such a disadvantage- I bulldogged it, I spent 24/7 inefficiently bouncing from topic to topic and sucking in what I could. Oddly enough by September 2014 ( I say this with humility but its true) I knew more about the specialtoes as they related to my areas than most of the Drs, Granted I was looking at stuff on the fringe far from the bell curve. Alot of my stuff has " ....this may be associated with.." not "is the cause of"and on I went finally getting a DX of PsA in 8 months ( avg DX time 4 years) , CVID in 10 months ( avg DX time 12.4 years 38% 15+ years) and Me/cfs 14 months ( I don't know what the average DX time is. As good as that may seem given my perplexing and disparate symptoms I am upset I didn't know all this in 120 days...I feel I should have. Anyway, I march on to pop some ldn pills, supps and vites, maybe some equilibriant + iosine I don't know yet. Take all this stiff for a few months and hope to get an imperceptible 1% improvement in any given month and nothing significant for 2 years. That is how Im realistically going in. I know I can't Rocky my way out of this , if it were possible I would have done because that is what I always had done. That pisses me off the most. I was master of this body now this body is my master.I do not relish a life being "kind and gentle" to this body . If it has now failed the Darwinian cut its time to cut it looose ( what do they do with lame horses). Before we do that Ill give it a good try to gain enough back that I can be over that magineau line I have in mind. stay well zapp its time for about 2-3 hrs ZZZs

 

[Zapped]

@ Kevin, Thank you for the compliment.

No doubt lots of kindred spirits have read this thread with mixed emotions and trepidations; and your last few posts reveal that you are having one hell of a time right now finding your way on a set tracks, seemingly not parallel.

Myself and each onlooker, mostly PWCs understands and empathizes that dealing with this GD illness feels like being caught between a rock and a BIGGER rock, with nothing but rocks up ahead, manifested in all the processes that seemingly block ‘the resolution to our malaise!’ You named some key ones.

There are few other mental gymnastics that are as taxing to the spirit - winning battles against demons we have yet to face, if ever we will, in fact have to face the ignominy we hypothocate in our darkest hours… .
IMO, that’s because in our own mind we tend to present value the future of all possible worse case scenarios, all imminently pending. It’s absolutely fallacious reasoning that sneaks in when we’re most vulnerable. It’s like contemplating a Safari and how one is going to handle each encounter with the multiple predators that roam the jungle, i.e. all at once. ‘Ain’t gonna happen!

Rather than beating yourself up and working so hard on the science of solving the ME/CFS/FM puzzle why not allow yourself to take some ‘off time’ from those rigors? Read some other personal stories around this forum (and over at phoenixrising.me). Go one on one with someone who is up to the task (regrettably, I'm not). I assure you that you will find intrepid mavericks who have found ways to slay the tiger and avoid or transform the other predators that test our being - one day at a time.

Personally, when I hit a wall I fall back on the wisdom of everyday humanity: that no matter how bad it is, it could always be worse. I adopted new heroes, like Stephen Hawking and wonder if I could put up with the indignities he suffers every day of his life; and I envision the ‘iron lungs’ of the 1940’s like rows of patriots at Arlington… . Thankfully, these others have paved the way for us to consider less traumatic alternatives.

If there is such a thing as a forum candle I hereby light one for you here in the spirit that a joy shared is twice a joy; a sorrow shared is half a sorrow. There is a path through this ME/CFS/FM (or ?) muck for you in interacting with others as you have done here but it’s yours to scrape together… .

 

[kevin Feldman]

What the hell am I doing up. The number one thing I read that aggravates the bitch and on its own can decapitate you is lack of sleep. Since this started I can count on one hand th nights I have had more than 3 hrs of ZZZZs. Anyway what you write is so great. It sounds as if you are one of the pour souls on the "dark side" ( that means lights out, bedbound, silence). Have you ever seen this ?i think I posted it yesterday....just riveting -that father is one of our best researcchers at Stanfrd Ron Davis Watch this

I like the hypersensitve amygdala lead , as I had just discovered Kama Gupta, inventor and purveyor of the ultimate amygdala reset kit "or your money back" guarantee. Then I found another The Active Minds Global audo entrainment- sound pulse your brain to health...actually all remedial theories make sense to some body. Problem is we are all individual cases and its like there is not one type pair of sneaker that will fit ll of us. Alot of this is untested.
You must be in the UK to post so early? Im only on here a short time and probably haven't earned the standing to tout anything. I even held back after my first session. I just had my second session in my own personal hail mary called "biomagnetism pairing" Its not the often quacked about false claims of sticking magnets in an ace bandage n yur kneee..this is done by a trained practioner. The theory made sense and I triednit. I wasn't sure about my delayed positve respionse the first time, I just assumed ts placebo. But today, after the second session I took a one hour nap ( nap means my body flicked not the light switch but the main power switcn to the off position). All I know is in the afernoon I felt better than I have an quite a long time...less pain, swelling, head clear...hmmmm Im going to keep at it as next week I am going to chose from a chinese menu of things which I just read abut in the appendix in the "Summary of Trial Therapies" . Under the columns benefit 98 % say NONE, a couple have improved fatigue but always with footnotes. Basically , they have no Alka Selzter---not a damn thing Ill get you a comprehensible explanation of how "Biomagnetism Pairing" works . Its not that popular and I saw no hits on here or PRising so maybe I can claim a beginners BIG LUCK WINNER...nit just yet

 

[kevin Feldman]