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Immunosuppressant or immunostimulant?

Ninan

Senior Member
Messages
523
I'm kind of a newbie so please bear with me here. First some facts:

-- I haven't had a cold or any infection at all since I got ME/CFS in 2004. Doesn't matter how much people cough at me.
-- When I become allergic to our cat I get a great energy boost.
-- Got lots of autoimmunity (RA; MS, psoriasis etc) in my family.
-- Swine flu vaccine left me feeling much better for a month.
-- Goji berries, that are supposed to stimulate the immune system, makes me feel like shit for four hours, with aching lymph nodes, heavy feeling over my chest and achy throat.

I draw the conclution that what I need is an immunosuppressant, not a stimulant. Still, the stuff mostly mentioned here, like iisoprisine, are supposed to be stimulants.

Anyone able to sort this out for me?
 

Seven7

Seven
Messages
3,444
Location
USA
I react horrible to boosters but I need modulators instead of suppressants. You need your individual cytokine profile done so you know which one you need.
 

Ninan

Senior Member
Messages
523
Thanks for the link (didn't work though, had to look it up). Gave some info. Still confused, though. Maybe I should try immunovir. Not sure how I can get my cytokine profile either.
 

Ninan

Senior Member
Messages
523
Done some reading on immunovir. Says it's "used as an immune stimulator for cancer, herpes, and AIDS."

Since I haven't caught a virus for ages this makes me a bit worried. Does it mean I don't have the Th2-shift?
 

heapsreal

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10,089
Location
australia (brisbane)
Done some reading on immunovir. Says it's "used as an immune stimulator for cancer, herpes, and AIDS."

Since I haven't caught a virus for ages this makes me a bit worried. Does it mean I don't have the Th2-shift?

The th1/th2 theory i think over recent years has been shown not to be 100% accurate, maybe the immune system is too techinical to isolate it down to 2 arms. Theres also a th17 now. Im not discrediting it but its just to technical.

I think the best way to look at immunovir is that it is an interferon inducer, so it stimulates the immune system to make more interferon. Interferon also has its own antiviral properties as well as increases nk function. So if your nk numbers and or function tests low then its worth a shot.

Not catching a cold/virus its hard to say what that means. Many symptoms of infections come from the immune system themselves not all from the infection, so if your immune system isnt functioning then its possible that you want get alot of symptoms from an infection that one would typically get like say high temps etc?

The other thing is that your whole immune system is in overdrive trying to fight the infection thats possibly causing your cfs, so when a cold/flu comes your way it doesnt get a foot hold as the immune system is on high alert and wipes it out before it gets a hold. Its just a theory and could be other reasons why some dont get colds.

The first few years of cfs i didnt get colds etc either but over time i seem to get more and they take longer to get rid of. Maybe the immune system over time get worn out. Test i have show that my immune system, t-cells are activated but my nk function is low, so aprt of its activated and the other doesnt work, maybe the t cells are trying to compensate for the low nk function??

cheers!!!
 

lansbergen

Senior Member
Messages
2,512
The other thing is that your whole immune system is in overdrive trying to fight the infection thats possibly causing your cfs, so when a cold/flu comes your way it doesnt get a foot hold as the immune system is on high alert and wipes it out before it gets a hold. Its just a theory and could be other reasons why some dont get colds.cheers!!!

I think so too and how would you notice the difference with the reaction to the ME pathogen.

Not the whole immune system is in overdrive some parts fail.
 

Ninan

Senior Member
Messages
523
I think so too and how would you notice the difference with the reaction to the ME pathogen.

Not the whole immune system is in overdrive some parts fail.

If there is a pathogen, that is. I'm more into the "hit and run"-hypothesis, where the infection is long gone but left antibodies who are reacting to stuff they shouldn't be reacting to. Seems to fit my experience, at least.
 

Ninan

Senior Member
Messages
523
The th1/th2 theory i think over recent years has been shown not to be 100% accurate, maybe the immune system is too techinical to isolate it down to 2 arms. Theres also a th17 now. Im not discrediting it but its just to technical.

I think the best way to look at immunovir is that it is an interferon inducer, so it stimulates the immune system to make more interferon. Interferon also has its own antiviral properties as well as increases nk function. So if your nk numbers and or function tests low then its worth a shot.

Not catching a cold/virus its hard to say what that means. Many symptoms of infections come from the immune system themselves not all from the infection, so if your immune system isnt functioning then its possible that you want get alot of symptoms from an infection that one would typically get like say high temps etc?

The other thing is that your whole immune system is in overdrive trying to fight the infection thats possibly causing your cfs, so when a cold/flu comes your way it doesnt get a foot hold as the immune system is on high alert and wipes it out before it gets a hold. Its just a theory and could be other reasons why some dont get colds.

The first few years of cfs i didnt get colds etc either but over time i seem to get more and they take longer to get rid of. Maybe the immune system over time get worn out. Test i have show that my immune system, t-cells are activated but my nk function is low, so aprt of its activated and the other doesnt work, maybe the t cells are trying to compensate for the low nk function??

cheers!!!

That's my conclusion too -- it's more complicated than Th1/Th2. (Th... 17?? :0 )

For me it's been the opposite. The first few years (4-5) I got a few mild infections but when I since I got sicker I get nothing.

Been thinking of that "catching but not reacting"- theory too but I doubt it. The main reason for that is that my father who has Bechterews disease or whatever it's called these days, and from whom I've inherited most bodily challenges, has the same thing. He hardly gets sick (and when he does, he feels better). It's like that for many with autoimmune diseases and I never heard of them collecting pathogens. I think my immune system is wired up, attacking stuff it shouldn't, and while it's at it, protecting me from viruses. Makes sence?

So, if there is no "ME-pathogen", just autoimmunity, how should we treat that while waiting for rituximab?
 

rosie26

Senior Member
Messages
2,446
Location
NZ
If there is a pathogen, that is. I'm more into the "hit and run"-hypothesis, where the infection is long gone but left antibodies who are reacting to stuff they shouldn't be reacting to. Seems to fit my experience, at least.

This is really the conclusion I have come to as well. Fits my experience too.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
This is really the conclusion I have come to as well. Fits my experience too.
we are all different as i feel that im the opposite, if i stop antivirals and get alot worse and the same with antibiotics, when i stop the sinus infections come roaring back. My sleep issues maybe apart of the hit and run theory as treating pathogens doesnt make a difference there. Again maybe its a sub group thing, hate saying it but might be the only way to explain the differences???
 

rosie26

Senior Member
Messages
2,446
Location
NZ
we are all different as i feel that im the opposite, if i stop antivirals and get alot worse and the same with antibiotics, when i stop the sinus infections come roaring back. My sleep issues maybe apart of the hit and run theory as treating pathogens doesnt make a difference there. Again maybe its a sub group thing, hate saying it but might be the only way to explain the differences???

I could be wrong heaps.

I caught a bacterial infection when I was 20 years old, was treated and cleared of it with antibiotics but was left with unexplained inflammation which remains to this day - 30 years later. I have had many tests to check whether the bacterial infection had come back and checked for other bacteria as well but all tests come back "normal " "healthy".
Very frustrating. As inflammation is a sign something is wrong but what ?

My health deteriorated from this 20 year old mark, and feel this unresolved inflammation is what has undermined me and caused problems with my immune system. Causing my ME ?

I have never tried antivirals, only antibiotics which don't help with the inflammation.
 

mellster

Marco
Messages
805
Location
San Francisco
-- Got lots of autoimmunity (RA; MS, psoriasis etc) in my family.

There is little proof that RA, MS etc. are auto-immune diseases. Recent research has suggested links to faulty metabolism and/or chronic infection causing chronic inflammation/scarring.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I could be wrong heaps.

I caught a bacterial infection when I was 20 years old, was treated and cleared of it with antibiotics but was left with unexplained inflammation which remains to this day - 30 years later. I have had many tests to check whether the bacterial infection had come back and checked for other bacteria as well but all tests come back "normal " "healthy".
Very frustrating. As inflammation is a sign something is wrong but what ?

My health deteriorated from this 20 year old mark, and feel this unresolved inflammation is what has undermined me and caused problems with my immune system. Causing my ME ?

I have never tried antivirals, only antibiotics which don't help with the inflammation.
i think proper treatment for us is going to have to be very individual. I dont even know if i have that much faith in infectious testing anymore, it seems from lab to lab that test results can be so different. I think having cfs makes you aware of how much medicine doesnt know, not just about cfs but everything.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
There is little proof that RA, MS etc. are auto-immune diseases. Recent research has suggested links to faulty metabolism and/or chronic infection causing chronic inflammation/scarring.

True, there are some people with RA improved on abx. Then there are some with MS that have improved on antivirals. Maybe the term autoimmune is something they use when they cant pin point the infectious cause but with obvious symptoms they cant go to their old standard depression diagnosis when they dont know?
 

mellster

Marco
Messages
805
Location
San Francisco
True, there are some people with RA improved on abx. Then there are some with MS that have improved on antivirals. Maybe the term autoimmune is something they use when they cant pin point the infectious cause but with obvious symptoms they cant go to their old standard depression diagnosis when they dont know?

That's what I think as well, esp. if frequent and/or high fever is absent.
 

Hip

Senior Member
Messages
17,824
I haven't had a cold or any infection at all since I got ME/CFS in 2004. Doesn't matter how much people cough at me.

Many ME/CFS patients become highly immune to catching colds. This is very common, and not at all unusual.

The best explanation for this that I have come across is the following one from Richard van Konynenburg:


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
 

lansbergen

Senior Member
Messages
2,512
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.

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.

That is a nice discription.

I will add : I think there is not enough interferon type 2.
 

Ninan

Senior Member
Messages
523
Bah, I wish things were less complicated. Is Rich's theory consistent with the rituximab-findings?

Valtrex has no effect on me btw. I haven't tried any other meds like it.