Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by debored13, Mar 10, 2018.
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There is a great deal of evidence that a variety of viruses can initiate ME/CFS, but it is less clear that a virus is involved in sustaining the disease. However, some patients may have a continuous problem with viruses, especially those viruses we always carry like EBV and HHV6.
These viruses are usually kept in check by the immune system. Any suppression of the immune system can cause reactivation of these viruses (e.g., shingles). It is possible (we have new supporting data on this) that the immune system is somewhat impaired in ME/CFS, which will make it difficult to keep these viruses suppressed. If we can find the cause of this disease and cure it, this virus problem should go away.
Also, there is a common misunderstanding about viral infection among some patients and even some doctors. Most viral assays used by doctors test for the presence of antibodies to viruses, not the viruses themselves. The presence of antibodies shows that the person had a viral infection in the past, but does not constitute evidence that it is still present....
Our goal is to find an accurate biomarker, find the cause, find a treatment for the cause, find a cure and then prevent the disease.
Question- Many ME/CFS experts have improved the symptoms in some patients by treating with antivirals and Ampligen (polyIC double stranded RNA). I think this proves that ongoing viral infections are causing our symptoms. It is not merely “tired patients” who are stuck in a lowered metabolic state because of a past trigger (which now is gone).
We devoted a section of the paper to this and related questions about infections. The section title was, “A Homogeneous Metabolic Response to Heterogeneous Triggers”. It concluded with the sentence, “Despite the heterogeneity of triggers, the cellular response to these environmental stressors in patients who developed CFS was homogeneous and statistically robust.” As background for this conclusion, I recommend reading our paper on this topic entitled, “Metabolic features of the cell danger response” (PMID 23981537).
Second, many people do not understand that the first response our body mounts against a viral, bacterial, or any kind of infection is metabolic. Yes, our chemistry is our first line of defense. Our chemistry reflects our instantaneous state of health. Innate immunity is coordinated by mitochondria and is an essential first step in developing adaptive immunity to any infectious agent. Without innate immunity there can be no antibodies and no NK cell activation, no mast cell activation, and no T cell mediated immunity....
Sometimes the inhibition of host cell functions can attenuate ME/CFS symptoms for a time, but in other cases, using potent antiviral drugs inhibits mitochondrial and methylation reactions and can delay a full recovery from ME/CFS....
Third, latent and reactivated viral and bacterial infections can occur, but in the case of ME/CFS that has lasted for more than 6 months, this may be the exception rather than the rule. Some doctors and scientists have not done a good job at educating patients and other scientists about the difference between serological evidence of infection in the form of antibodies like IgM and IgG, and physical evidence of viral replication like PCR amplification of viral RNA or DNA, or bacterial DNA....
I believe the symptomatic improvement after antiviral treatment may have more to do with the metabolic effects of antivirals in ME/CFS than their action on viral replication. The good news is that this hypothesis can be studied scientifically and put to the test easily using the tools of PCR and metabolomics.
Good science needs to remain open, ask the questions without bias, design good experiments, take careful measurements, then have the courage to follow the data wherever they may lead.
this is really giving me second thoughts re: my current use of antivirals
This is interesting, although those statements were discussed here back in 2016. Naviaux and Davis don't believe viruses play a big part, but lots of CFS/ME doctors think otherwise. There is a big trial going on by Pridgen et al. (primarily for fibromyalgia) that investigates use of Famvir+Celebrex combo and apparently there are some promising results upcoming. One patient who had CFS/ME for 26 years got into remission after a couple of months on this protcol. If those viruses play no part, then there should not be any recoveries from chronic diseases with Pridgen protocol, but apparently there are.
It's nice to ear he is studying PCR for virus in ME/CFS patients, but it is something our docs can't do, it would mean taking samples in our body (lymph nodes, nervous system, muscles) that are not easy to take (blood is not enough).
on the other hand if you do two serologies some weeks apart, and you can see a rise, it means that there is an active infection.
"The inhibition of methylation reactions in the cell also affects neurotransmitter (dopamine, norepinephrine, and serotonin) and phosphatidylcholine membrane lipid synthesis, folate and B12 metabolism, and many other reactions. So by giving antivirals, doctors are not just inhibiting viruses, they are also inhibiting many host cell metabolic functions.
Sometimes the inhibition of host cell functions can attenuate ME/CFS symptoms for a time, but in other cases, using potent antiviral drugs inhibits mitochondrial and methylation reactions and can delay a full recovery from ME/CFS."
Maybe vitamine C shots are safer ?
"Ampligen is a form of double stranded RNA called poly(IC), for poly inosinic:cytosinic acid. We have studied the action of polyIC extensively and have published this in our studies of autism and virology. It acts by binding to an innate immune receptor called TLR3, creating a simulated viral infection. If you expose a pregnant animal to a single dose of polyIC at the beginning of the second trimester, she develops a 24-hour flu-like illness then completely recovers. However, her pups have social and cognitive abnormalities similar to autism for life. If you look at their brains, you find that they have activated microglia and brain inflammation for life.
In adults, Ampligen also binds the TLR3 receptor, and activates an incomplete antiviral response characterized by a non-MyD88 dependent activation of interferon and other cytokines. Long-term use of polyIC carries a risk for toxicity because of chronic innate immune stimulation. In certain clinical situations like cancer or Ebola virus infection the toxicity is actually part of the therapeutic effect."
If you can trigger autism with Ampligen, so I don't understand why it couldn't also create CFS/ME in adult...
This doesn’t make a lot of sense to me either. I wonder if there is something in the full paper that explains it better. I will look.
This makes it (a little) clearer, I think: https://paolomaccallini.wordpress.com/2016/09/02/ampligen-rituximab-and-hypometabolism/
I think I finally understand.
Ampligen induces immune reaction to acute viral infection, which can trigger autism if given to pregnant women, just like Flu infection can trigger autism if a pregnant woman catches it during pregnancy.
So I guess the post infectious hypometabolic state is a weird immune reaction, and that Ampligen may switch it to a correct immune reaction which would give a chance to end ME/CFS...
I wonder if there is a risk that one can go back to the weird immune reaction after the switch to acute immune response...
if Ampligen is working like an acute infection and is supposed to put again the immune system on the right track,, then
what about catching a good old flu to do the same effect?
one of the reasons i'm interested is that I only had the bands that usually indicate past infection, but my CFS doctor is into the lerner protocol and thinks that those high IgG or IGM--i forget which?? bands indicate current infection. Well so far i'm only getting worse on antivirals. So i was curious about what the researchers I respect most have to say about it
The biggest oversight I think is the focus on viruses. We know q fever can cause me cfs, and there is always the Lyme question too. My own ME was triggered by yersinia, so I would hope that the researchers are open to such possibilities.
I think the omf, ron davis, and robert naviaux are well aware of that. naviaux's paper on cfs discusses that it's a "homogenous response to heterogeneous triggers"
Hi Patti- I'm pretty sure most viruses can be detected by PCR with a blood test (ie. ebv, cmv, etc.)
It is actually very unusual to be PCR positive to herpes type viruses.
Hi Ema-Wouldn't a negative PCR test mean the virus is latent and not active? Assuming one has the infection.
All they know from blood work is if its a new infection and your igm positive. Chronic reoccurring infection they cant tell. Certain immune markers can indicate the body is fighting something, which is common in cfsme, but what that something is comes down to an educated guess.
Even spinal fluid isnt 100% effect for picking up active infections.
If this was the case famvir should work on all viruses even the flu or even bacteria for that matter, but it doesnt. But we need specific antivirals and abx for different viral and bacterial infections.
This chart talks about different testing methodologies and whether they can or can't determine active from latent infection for HHV-6. I have always assumed that the same would hold true for EBV. But i don't really know the difference between these tests, and the Multiplex PCR from your linked article.
So, I would guardedly say at this point, that i don't believe low level, chronic herpes viral infections in the tissues can be accurately diagnosed by PCR testing. I feel like if it were otherwise, Lerner would definitely have used that kind of testing, as it is not new, rather than the antibody testing he did use.
It's interesting that women have twice as many herpes virus reactivations than men, and at the same time, there are about twice as many women with CFS than men. Coincidence?
Ask me after another thirty years of science is done.
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