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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I have recently made it......an acquired taste but I like it...... you can use nettle tea or rooibos which will cut down on the caffeine but it is debatable as to whether the sugar is really all used up in the processing....it sure taste sweet and sadly I don't tolerate sugar......it also contains alcohol.
There are plenty of scary health stories out there regarding kombucha......hospitalisation, deaths etc. The thing that concerned me most in every article was the risk to those who are immune compromised
My very healthy sons have taken it over but as I'm soo sick I daren't risk it
http://www.cancer.org/treatment/tre...rnativemedicine/dietandnutrition/kombucha-tea.
allyb
A website called thesplendidtable had a good write up on this. I found it by googling kombucha warning.
One other concern i had healthwise other than the sugar and alcohol is that I found that the containers where I'd previously stored my kombucha grew scobies in whatever I put in them if I didn't use bleach to kill the traces of scoby.
Apparently the components of the scoby stay alive even after the bottles were washed and put away.
ok. maybe that's a good trait. lol. I just couldn't believe how virulent my scoby was.
I've started bleaching my dishes every so often after seeing this. When i can remember. The plastics always look better.
tc ... x
Yes I've come across an article on "sciencegasedmedicine" that people with compromised immune systems should not drink this. Hmm, I don't think I will not take that chance.
I seem to remember Rich Van K saying that people with ME/CFS don't get viral/bacterial infections very often (ie. we rarely get the flu) because of the immune dysregulation that normally goes on in in ME/CFS prevents infection while allowing dormant or chronic infections to proliferate and flourish. I am sorry that I can't seem to find a link to this, possibly it is on the videos from sweden 2011... (Does anyone know?)
Why You Rarely Catch a Cold in ME/CFS
By Richard van Konynenburg
So first, how does the immune system normally respond to viral infections? There are basically four types of responses, listed here in roughly the chronological order in which they normally occur:
1. Type I interferon (interferons alpha and beta) responses
2. Natural killer cell response
3. Virus-specific cytotoxic T lymphocyte (CD-8 "killer" T cell) response.
4. Antibody response
Type I interferons are secreted by infected cells, to alert nearby cells, and hopefully prevent them from becoming infected. The Interferon responses include the PKR, the 2,5-OAS RNase-L, and the Mx responses, among others. The PKR response inhibits the synthesis of viral proteins inside host cells. The 2,5-OAS RNase-L response degrades viral RNA inside host cells. The Mx response inhibits viral gene expression and assembly of the virions inside host cells.
The natural killer cells recognize virally infected cells in which the viruses are attempting to hide from the immune system by shutting off the Class I HLA mechanism that the CD-8 cells use to recognize virally infected cells. If the Class I HLA molecules are not displayed on the cell surface, the NK cell kills the cell.
The CD-8 killer T cells kill cells that are displaying viral antigens by means of the Class I HLA molecules.
Antibodies against viral antigens are made by B lymphocytes and plasma cells, and they bind to viruses that are outside the host cells, as when an infection is beginning or when viruses are spreading from one host cell to another.
This neutralizes the viruses, so that they cannot enter new host cells, and it can also "mark" them for attack by other cells of the immune system, such as macrophages.
O.K., now what happens to these responses in ME/CFS?
Well, the Type I interferon responses continue to work, and even though they are intended to be short term responses to hold back the viral infection until the "cavalry" in the form of the CD-8 killer cells arrives, and the CD-8 cells, together with the NK cells, knock out the viral infection, in ME/CFS the interferon responses continue to work overtime (and even become dysregulated in the case of the RNase-L) because the CD-8 killer cells are not able to take over. Sadly, the "cavalry" never arrives, leaving the "civilians" to battle the "Indians" in an ongoing guerrilla war.
What causes the formation of the dysregulated low-molecular-weight RNase-L molecules? I propose that glutathione depletion is responsible. It activates calpain, and calpain cleaves the normal RNase-L molecules. The cleaved parts join together, forming the unregulated LMW RNase-L.
Both the NK cells and the CD-8 killer T cells are rendered impotent by their inability to make perforin and granzymes in normal amounts. Furthermore, the CD-8 killer T cells are not able to multiply to outnumber the "bad guys" as they should. Why does this happen? I propose that it is a result of glutathione depletion and depletion of folates, respectively, which are part of the GD-MCB vicious circle mechanism that I believe is at the basis of the pathogenesis of ME/CFS.
Antibody production continues, and in fact may be increased, because of the shift toward the Th2 immune response in ME/CFS, which favors humoral immunity, i.e. the production of antibodies by B lymphocytes and plasma cells. What causes this shift? Again, I have proposed that glutathione depletion is responsible, in this case in the "naive" T cells.
So what we have are heightened interferon and antibody responses, but failure of the main "kill" mechanisms. The result is that latent viruses in the body (such as EBV, CMV and HHV6) are able to reactivate, and the immune system continues to fight with the weapons it has left, confining the viruses and keeping the host alive, but not winning the war against the viruses by completely knocking them out or putting them back into latency.
Now, what about your questions?
Would interferon treatment work? Well, to some degree, but without the other dysfunctional immune responses to help them, they cannot completely knock out the viruses.
Why don't PWMEs get colds and flus? I think it's because of the constantly elevated interferon responses. This produces what has been called the "antiviral state." With this going on, it's difficult for a newly introduced virus to get a foothold.
Does this have anything to do with the elevated cytokines in ME/CFS? Yes. The immune system is well aware that there are enemies inside the perimeter, and it is sounding the alarm, trying to organize the defense. The cells of the immune system are sending chemical messages back and forth to each other in the form of cytokines. However, because the NK cells and the CD-8 cells are impotent, even though the trumpet sounds, they don't respond, because they are not able to, so the messages just keep flying back and forth, unheeded.
So what's the solution to this problem? How do we win the war? Well, I'm still working on that, but I think that a big part of it will be to restore glutathione, folates and methylation, and that will probably require a methylation protocol.
Beyond that, because viruses that are well-entrenched have various ways of foiling the immune system, even though the immune system is restored, other measures will likely also be needed. One interesting one is GcMAF, which overcomes one of the strategies used by viruses to foil the immune system, i.e. nagalase. Antivirals are another possibility, especially in view of some success using them, as in Dr. Lerner's experience.
I hope this is helpful.
Best regards,
Rich
aaron, to me, its the usual reductionist western view of viruses, littered with "us" and "them" "invader" talk. humans are brought up to fear viruses and microbes as some kind of evil intruder that its necessary to wage "war" on. see those adverts on the tv showing the latest cancer causing chemicals cantering across the kitchen sideboard, pictorially represented as knights in shining armour come to save the day. to see it as a war, imo, prevents understanding.
digestion is a large part of immunity with stomach acid and bile ensuring no "invaders" get into the body via that entry and that food is digested so that it doesn't create waste that lower bacterium can get a foothold in.
it maybe right, im still not seeing it. if its chronically activated then why does it not mop up whats hanging around? digestion is a major part of immunity and is very compromised in most individuals with me/cfs.our immune system is chronically activated so we have less risk of viral infections.
i think it is chronically activated only with respect to viruses. something about elevated cytokines or interferons(?). it is the same reason you do not usually get a second viral infection when you already have one.it maybe right, im still not seeing it. if its chronically activated then why does it not mop up whats hanging around? digestion is a major part of immunity and is very compromised in most individuals with me/cfs.
the antiviral state seems to me to mean no adequate reponse leading to no acute illness phase, like flu, rather than a state of alert that stops any new rna getting a foothold.
so is it saying that every cell in my body has some form of information in it that stops foreign rna replicating inside them? that would seem like quite a feat for an ill body
aaron, to me, its the usual reductionist western view of viruses, littered with "us" and "them" "invader" talk. humans are brought up to fear viruses and microbes as some kind of evil intruder that its necessary to wage "war" on.
it is the same reason you do not usually get a second viral infection when you already have one.
Hmm... Once again, I am no expert. And I very much wonder what someone more learned would say. This is what I get after reading Rich Van K's paper:
Looking over wikipedia's entry on interferon, it does indeed seem to induce an anti-viral state, and I think this might be what you are looking for? But my tiny bit of research has not turned up the extent to which this antiviral state persists in the presence of low NK and CD-8 responses. However I imagine that if, as you suggest, the antiviral state does not persist in people with ME, then we would have seen studies showing that a large portion of people with ME are (chronically) infected with the flu. I understand that the absence of proof proves nothing; but I, personally, would not bet on chronic influenza being part of the picture.
I think that Rich Van K (and other theorists, to a greater or lesser degree) believe that the dysfunctional immune response is an essential player in the "vicious cycle." The wikipedia page on interferon looks like it might be pertinent. It seems a bit like the French invasion of Russia, where the Russians burned their fields rather than let the French live off of them. I'm saying that yes, interferon prevents viral replication, but maybe it makes more sense understanding that it comes at a price?
What was it that indicated that your infection was just getting over?
I agree completely with your sentiment on what extensive use of war metaphors in health fields reflects/has gotten us. It reminds me of the Naturopaths who believe Pasteur agreed on his deathbed that it was the "the mileau, not the microbe." I certainly think so. And I agree that improving gut health, or perhaps working with our body in a more systemic way like they do in eastern medicine would be very good.
But Rich's use of war metaphors worked for me. In his defense, his first approach was to fix the mileau. I believe he said that he turned his research to individual infections only when fixing the mileau failed to cure most people. I do hope there is another immune metaphor that works as well as war does.