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Differences between HIV/AIDS symptoms and CFS symptoms

shannah

Senior Member
Messages
1,429
What is the medicinal property in St. Johns Wort that he uses to justify using it as a treatment for me/cfs? It looks like the only scientic indication is for mild depression. Is there something different in SJW than in an AD?

This is more a reflection of my lack of understanding what the author is saying. .

I know that SJW has antiretroviral properties. I investigated it and trialled it back when XMRV was thought to be the cause.
 

JES

Senior Member
Messages
1,320
I trialed SJW long ago, didn't do a thing for my CFS symptoms except causing hypoglycemia. Haven't heard of anyone with CFS/ME getting great benefits from it, seems to work better on depression.
 
Messages
8
I trialed SJW long ago, didn't do a thing for my CFS symptoms except causing hypoglycemia. Haven't heard of anyone with CFS/ME getting great benefits from it, seems to work better on depression.
But maybe ARV could be help full? Like they now looking at for ALS.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I have no idea about the validity of this persons theory. But hopefully he is using an n=1 as a case study that only indicates that this theory may be true.Does he have other citations that explain this in more detail or at a level my addled mind can understand?

What is the medicinal property in St. Johns Wort that he uses to justify using it as a treatment for me/cfs? It looks like the only scientic indication is for mild depression. Is there something different in SJW than in an AD?

This is more a reflection of my lack of understanding what the author is saying. I do get the part about the cortisol levles. Beyond that I'm lost. Any citations to help understand this would be appreciated. I'll check his other work to see if that helps.

I think your lack of understanding might be a reflection of it making no sense! (I didn't get even the cortisol bit which seemed to be both ways at once.) I rather think this is some sort of SPAM advertising, maybe for Dr Laderoute. She goes in for functional cures for cancer, whatever those might be.
 

sorin

Senior Member
Messages
345

So, nothing new under the sun. This is nothing but a clone of the cancer theory that was telling us that all people have the seeds for cancer in their bodies but cancer is developing only on a few of them, triggered by some specific stimulus in some specific circumstances. So what is this "new research" telling us? That all human beings have AIDS/HIV like seeds in their cells, but only a part of them develop the immunologic disease only triggered by some specific stimulus in some specific circumstances!!! If my understanding is wrong, please correct me...
 

Jonathan Edwards

"Gibberish"
Messages
5,256
So, nothing new under the sun. This is nothing but a clone of the cancer theory that was telling us that all people have the seeds for cancer in their bodies but cancer is developing only on a few of them, triggered by some specific stimulus in some specific circumstances. So what is this "new research" telling us? That all human beings have AIDS/HIV like seeds in their cells, but only a part of them develop the immunologic disease only triggered by some specific stimulus in some specific circumstances!!! If my understanding is wrong, please correct me...

Yup, it is wrong for HIV. Most of us have no HIV in us. If you have HIV untreated you are very likely to get AIDS but in some people with protective genes it might take many years. But for about 99% of people in the UK there is no seed of HIV anywhere.
 

sorin

Senior Member
Messages
345
Yup, it is wrong for HIV. Most of us have no HIV in us. If you have HIV untreated you are very likely to get AIDS but in some people with protective genes it might take many years. But for about 99% of people in the UK there is no seed of HIV anywhere.
I have wrote "HIV like seeds" that meant viruses from the same family with HIV (i.e the so called HERV).
What I meant to say was HERV=HIV like virus=retrovirus genetically found in all human beings
Isn't this theory saying that all human beings have HERV's, i.e retroviruses like HIV, in their bodies?
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I have wrote "HIV like seeds" that meant viruses from the same family with HIV (i.e the so called HERV).
What I meant to say was HERV=HIV like virus=retrovirus genetically found in all human beings
Isn't this theory saying that all human beings have HERV's, i.e retroviruses like HIV, in their bodies?

We all have incorporated retroviruses but they are nothing like HIV. There is no analogy between the two. HIV is not incorporated into germline DNA.
 

JES

Senior Member
Messages
1,320
i still have a nagging feeling this is a retrovirus..i cant get rid of the idea

If it was true, I'd imagine you would hear stories about HIV patients recovering from ME while taking ARV medications. As was the case with rituximab, which was given for cancer patients, but their ME symptoms improved as well.
 

duncan

Senior Member
Messages
2,240
Would ARV's work equally well regardless of RV type? For instance, HIV is an exogenous RV; would the protocol be the same for a HERV? Does the nature of an activated endogenous RV require a different approach?

Do we even know?

Sorry, just musing about stuff I'm sure we talked about five years back.
 

Daffodil

Senior Member
Messages
5,875
Would ARV's work equally well regardless of RV type? For instance, HIV is an exogenous RV; would the protocol be the same for a HERV? Does the nature of an activated endogenous RV require a different approach?

Do we even know?

Sorry, just musing about stuff I'm sure we talked about five years back.
hi Duncan. well i took tenofovir (Viread) for a long time. it helped only a little but when i tried to stop it, i became so ill, i couldn't get out of bed and was again having labored breathing and feeling very close to death.

when i brought this up to my doctor, he commented that the drug was probably acting on HERV. i asked him when he thought i could stop, because i certainly did not want to go through what i had before....he said maybe 4 yrs into treatment. i was able to stop it at around the 3 - 3.5 year mark
 

duncan

Senior Member
Messages
2,240
@Daffodil , does it even work that way? I mean, how far does our knowledge of RVs extend? I am not doubting you or your doctor. I simply assume most of the times these days that the collective medical community knows quite a bit less than they are willing to admit to us patients. :)

ETA: I remember when the formula for chronic Lyme was XMRV and Lyme. Part of me STILL thinks a RV link may lurk somehow...
 
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Daffodil

Senior Member
Messages
5,875
@duncan its strange, isnt it...how we have same gut issues as HIV patients, how we can have low CD4 counts...how the disease often starts with a flu-like illness.....it just seems to fit a retrovirus senario so perfectly...

but then again, i think severe lupus can also cause low CD4 (i think!) and many autoimmune patients also have dysbiosis.....
 

duncan

Senior Member
Messages
2,240
@Daffodil , it's hard to keep it all straight in my head at times.

I do know the retrovirus theory is like a sweet opiate I long for because it's soothing in its simplicity...But then I toss back some coffee and cynicism, and trudge on.
 

Daffodil

Senior Member
Messages
5,875
If ME is caused by a retrovirus, then the 4 ARVs I am taking are not the ones that will control it.
hi scott. fair enough. have met some who are on ARV's for HIV and also have CFS...got the fullike illness and the whole nine...all the while on ARV's.

at the same time, i have heard of at least 5 people who have recovered or remain in remission with ARV's! they all seem to have had CFS and not something else.

xo
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
hi scott. fair enough. have met some who are on ARV's for HIV and also have CFS...got the fullike illness and the whole nine...all the while on ARV's.

at the same time, i have heard of at least 5 people who have recovered or remain in remission with ARV's! they all seem to have had CFS and not something else.

xo

Making the argument that ME folks should contract HIV to at least have a chance at accessing medication that may help ME!! ;)

Sort of like an ME patient kind of, sort of, hoping to get cancer to get access to Rituximab or Cyclophospamide to maybe help with ME.