Similarities between Post Polio Syndrome and ME

[mrpanoff]

mrpanoff,
Interesting. What lab was used for your serum polio antibodies? Was there a reference range? Viral reactivations tend to decline in intensity levels after the sudden onset. they do their damage to the immune system and fade back into the woodwork. How long ago was your onset?

It was Rospotrebnadzor lab in Moscow, a sanitary inspection authority. There was no strict reference range. They told me up to 1/256 can be observed in healthy individuals. There was a problem with polio type 1 results as they didn't do dilutions properly at first and gave me a result of 1/>32. However, upon my insistence they did further dilutions and proclaimed 1/32 as the final result.

The onset was more than 2 years ago.

All in all, together with the negative PCR (detects common sequences between ECHO, Polio, Coxsackie) it doesn't look like an enterovirus, for me at least.

This doesn't rule out the possibility of Polio vaccines of the past having been contaminated, hence the reported coincidence between Polio and ME outbreaks.

 

[Levi]

mrpanoff,
Generally, testing of Post Polio Syndrome patients for active enterovirus has not been fruitful, as in your case. You point out the possibility of vaccine contamination. You will never see any good research on that subject because it is a "radioactive" topic. We do know that polio vaccines have often been contaminated with polyoma viruses though, so that is a good place to look for evidence of viral infection. As long as you leave vaccines out of the picture. Here is an interesting article on the subject: http://www.scielo.br/scielo.php?scr...1413-86702011000300017&lng=en&nrm=iso&tlng=en

In most reports so far, the main limitation to conclude that BKV is the causative agent of the neurological disorders is the lack of demonstration of the virus in the brain tissue sample, either by immunohistochemistry or by in-situ hybridization. However, since most cases occur in AIDS and transplant recipients with multi-organ involvement by BKV infection, it is reasonable to assume that if a patient shows neurological symptoms without a positive serology and PCR for other pathogens (namely viral agents such as JCV, herpes simplex virus, cytomegalovirus, etc), while a positive PCR for BKV is present in the CSF/brain tissue, it strongly favors the diagnosis of a BKV meningoencephalitis.

ME/CFS patients are well known to have viral reactivations of herpes simplex viruses, cytomegalovirus, etc. immediately after sudden onset. These usually resolve or diminish with time. Is this a coincidence or evidence of a "low grade" BKV infection in the CNS? It is doubtful we will ever see any research on this, but it is an interesting question.

All in all, together with the negative PCR (detects common sequences between ECHO, Polio, Coxsackie) it doesn't look like an enterovirus, for me at least.

This doesn't rule out the possibility of Polio vaccines of the past having been contaminated, hence the reported coincidence between Polio and ME outbreaks.

 

[rlc]

Hi mrpanoff, from what Ive read PCR isnt much use for finding Enteroviruses, unless it is done near the time of the initial infection, Hyde has found that in the patients that he has found Enterovirus infection, that it cant be found again after three years even though they remain sick. The virus seems to go deep into the body, and can only be found by muscle and stomach biopsy, although the VP1 test does pick up infection it is none specific as to which Enterovirus it is.

So you may still have an Enterovirus infection, but unfortunately the tests to find out are not available to many people. I gather that Dr Chia is working on a better diagnostic tests, but dont know when that will become available.

Theres another interesting article with more information on Enterovirus findings in ME patients here http://www.imet.ie/imet_documents/book/Chapter 3 - What Causes ME - Part 1.pdf

All the best

 

[floydguy]

It's rather discouraging that this work was put out over 20 years ago. It seems like the direction is really backwards not forwards.

 

[Levi]

Floydguy,

IMHO there is no longer any direction at all with regard to ME/CFS research. Patients may choose to satisfy their own curiosity about some particular aspect of the illness. However, there is no accepted diagnostic testing available, no effective treatment available, and no support from the orthodox medical community available to patients. 20 years ago there was hope that progress will be made as research unfolded. At this point, that is an unlikely scenario. The patients who will do best will be the ones who adopt a pragmatic approach, and abandon all expectations of medical treatment or support. Patients will need to become self-reliant now, in charge of their own education about the illness and self-treatment possibilities.

It's rather discouraging that this work was put out over 20 years ago. It seems like the direction is really backwards not forwards.

 

[rlc]

Hi floydguy, its very discouraging to see how much good research from the past has been completely ignored by the likes of the CDC and the Wessely School, while they continue to promote their pseudo science psyc theories. I also get very disappointed with a lot of the new researchers getting involved and not doing their background reading as well and then doing their research based on a complete lack of knowledge of what ME is, and you end up with them proposing theories like its genetic, genetic illnesses dont cause fast moving epidemics, ME is obviously infectious!!

If the researchers would just read the older research and get a proper idea of what their dealing with, tests the patients in their cohorts properly to get rid of all the misdiagnosed, and then use the modern technology to tests ME patients, they would be able to work it all out very quickly, fingers crossed Lipkin has done his research properly!

All the best

 

[jepps]

This doesn't rule out the possibility of Polio vaccines of the past having been contaminated, hence the reported coincidence between Polio and ME outbreaks.

Dr. Richard Bruno is Director of Fatigue Management Programs and The Post-Polio Institute at Englewood (NJ)Hospital and Medical Center. He suggests:
http://www.ibsgroup.org/forums/topic/37539-post-polio-syndrome-symposiums-in-canada-san-diego/

OneCoxsackie virus, named A7, produces paralytic symptoms so similar to polio that it has been named poliovirus "Type IV."Other enteroviruses that cause damage and symptoms similarto the polioviruses include all the other Coxsackie viruses, the ECHO viruses (which in 1956 were the first viruses associatedwith a CFS/ME outbreak) and the recently discoveredEnteroviruses 71.
And the oral polio vaccine is "causing" chronic fatigue syndrome by making way for other enterovirus to grow in the intestines andbe able to do damage like that done by the poliovirus, exceptthat the damage is most frequently found in brain activatingsystem neurons and causes fatigue, not in the spinal cordcausing paralysis.

The CFS epidemies after polio vaccines were the reason, why the live virus was changed in a dead virus 20 years ago.

But Donna Gates (BDE, treats autism) writes:
http://bodyecology.com/articles/myths_truths_mercury_autism_connection.php#.VOA82PmG9Ci

This is why babies are being born today with systemic fungal infection. When this happens, yeast is in the baby's gut. Studies show that yeast in the amniotic fluid can paralyze the gut wall, so babies are in turn constipated at birth. This can be serious because the baby won't have the ability to eliminate inherited toxins - including metals, like mercury.
A baby's blood-brain barrier isn't formed until 6 weeks after birth. Before the blood-brain barrier is formed, there is potential for fungus and viral infections to enter your baby's brain.
Because the child has an underdeveloped immune system, instead of building antibodies to the live viruses in this vaccination, he becomes infected by the vaccination.

New studies here and here suggest, that vaccine complications are due the low bifidos and a compromised gut flora.
As Sandler researched, polio epidemies always were in summer, when the children had low blood sugar because of eating much ice and sugar and having much training. As sugar feeds candida, this fits with the idea of donna gates, that fungus overload, which suppresses immunity, provides the milieu for viral infections, of course also of viral infections from vaccines. The same writes Dr. Enderlein, a Germain researcher.

I treat candida since 9 months (stooltest), since this time I excrete it. Monitoring bioenergetic testing shows upcoming microbes and other toxins., the latest was the coxsackie A7, what caused me a strong immune reaction with higher temperature, coloured sputum and a sniffy nose for two weeks.

Maybe the fungi (candida is rarely alone, mostly mold is with it) is the underlying cause of persisting viral infection, never mind if from vaccines or elsewhere.

As candida blocks methylation, part of polio symptoms could also be deficit of several minerals and vitamins, as the gut flora produces them.

 

[ahmo]

My husband has Post Polio Syndrome, which began some years before my illness. We share many symptoms re fatigue, loss of strength. I've often wondered if a polio vaccination started my demise. I had a rather serious illness with high fever as a child, and it may, or may not, have been shortly after oral polio vaccination, around 1960. My thyroid stopped functioning within a couple years of that.

 

[jepps]

Thank you for your answer, @ahmo, and greetings and best wishes to you and your husband. I also was very frightened, before our daughter was vaccinated, and in fact, she had a cerebral membrane excitation. She was born with candida. As I was a very angry crying baby (my mum told me) - I assume from severe colics, not only from being angry - supposably I was born with candida too.
I do not remember, whether I was ill after the vaccines as child, but I remember that I always had an allergic response with swollen arms, and that I was inflamed afterwards.

 

[ahmo]

@jepps I was recall reading you recently saying you'd been dealing with Candida for 9 months or so. I couldn't find the post to respond there directly. Have you been using anti-fungals all this time? Have you written about it elsewhere, you can link for me? I'm about 6 weeks into this protocol, can't imagine it going on and on, which is how it already feels! thanks

 

[jepps]

@ahmo, I do not take herbs for the fungi. I take higher dosages of saccharomyces boulardii, additionally prescript-assist, bifidos+lactos, the fibres and RS for building up the gut. For biofilms I take CDX (with cellulase+protease). For candida+mold I take Pleo Sanum, these are the healthy form of candida+mold, which coalesce with the pathogene form, and so dissolve the pathogene fungi forms, to create gradually a healthy milieu in the gut. This protocol is thought to take at least 1 1/2 to 2 years, so long takes the fungi to eliminate.

 

[picante]

My husband has Post Polio Syndrome, which began some years before my illness. We share many symptoms re fatigue, loss of strength. I've often wondered if a polio vaccination started my demise. I had a rather serious illness with high fever as a child, and it may, or may not, have been shortly after oral polio vaccination, around 1960. My thyroid stopped functioning within a couple years of that.

@ahmo, do you know anything about Simian virus 40, which was in the polio vaccines from 1955-1963? I was also vaccinated during that time. Can we get tested for SV 40?

I have read that it can be transmitted between sexual partners and from one generation to the next, so I wonder what the rate of infection is now, 2+ generations later.

 

[Sing]

@ahmo, do you know anything about Simian virus 40, which was in the polio vaccines from 1955-1963? I was also vaccinated during that time. Can we get tested for SV 40?

I have read that it can be transmitted between sexual partners and from one generation to the next, so I wonder what the rate of infection is now, 2+ generations later.

There was an excellent book called The Polio Paradox by Dr. Richard Bruno from 2003 about post-polio syndrome and its close similarities with CFS.

There is also Dr. John Chia in Los Angeles who studies the connection of ME/CFS and the Coxacki B (spelling?) virus which was also the virus which caused polio.

 

[Sing]

My vague memory tells me that there is no evidence that people got polio from the vaccines, even though the quality of the vaccine wasn't as good at first as it later became. However--a big however--polio myelitis is the result of a common Cocksackie B virus, of which there are a number of closely related forms. The main form associated with polio is the one that people are vaccinated against. But it is possible to get polio--very rare but possible--from one of the other varieties of this virus. Then--another point of great relevance to us--these Cocksackie viral infections can cause brain damage even without polio myelitis. All this is covered in Dr. Richard Bruno's book, The Polio Paradox. He was the head of the International Task Force on Post-Polio Syndrome, and a polio survivor himself, so his is about as informed a look at the subject as you might find.

 

[CantThink]

There was an excellent book called The Polio Paradox by Dr. Richard Bruno from 2003 about post-polio syndrome and its close similarities with CFS.

I have that book! I got it second hand. My mum's read it twice. It seems really good and worth reading.

 

[ahmo]

@picante, I don't know anything about Simian. sorry. Interesting comments here.

@jepps thanks for that info. Good plan for when I finish this phase, a few more weeks to go. Finally I put some practices in place to make things easier, including doubling my carrot juice/pulp intake. Praisebe for free radical scavengers!!!

My internet connection is waiting repair, still several days away, so my response time is pretty slow. cheers.

 

[vshelford]

Absolutely there are a lot of similarities to post-polio on paper. I went so far (about 15 years ago) as going to a PPS physician (and subsequent work-up for MS as well) who said there was no particular difference between what I had and PPS, that the treatment (or lack of it) would be essentially the same in any event, and that I should 'pep up' and do some volunteer work to get my energy back! I went to a number of meetings of the PPS support group in my city, and of course talked with several of the people. It became clear to me that what I had was NOT what they had. They had mental energy, loved (and therefore tolerated) alcoholic drinks, loved a party, etc., etc. Sure, many rode scooters or motorized wheelchairs and had levels of muscle 'inability', but they did not have the neuroendocrine exhaustion or post-exertional malaise anything like mine (or my alcohol intolerance) or type of cognitive problems I and people in my CFS support group had.

This is rather a late reply, having only just joined the forum, but the PPS group you met up with were not typical, in my experience. Indeed, all of my polio contemporaries who attempted the "pep up" route regretted it later, as they landed up with more severe restrictions later. As far as I know at this point, I just have PPS, but maybe ME/CFS too, as I absolutely can't tolerate alcohol and have every level of exhaustion and post-exertional malaise. A huge amount may depend on where the polio took it's greatest toll in the body. It's interesting - I did encounter doctors who tried the "pep up" routine on me when I was looking for a diagnosis of what all these problems were about, and when it obviously didn't work, they decided I had myasthenia gravis and went to considerable lengths to prove it, never quite succeeding, until a muscle biopsy definitely ruled it out and suggested the most likely issue was polio damage. One thing both polio survivors and ME/CFS sufferers have in common, is a dearth of doctors who have any experience, or indeed interest, in our cases.