Differences between HIV/AIDS symptoms and CFS symptoms

[sorin]

Lots and lots of different conditions from leukaemias to lupus can produce these symptoms. You do not make a diagnosis on these symptoms - you look for something specific that tells you which of fifty possible causes it is.

Then do you have an explanation why all articles presenting these symptoms (like the one I mentioned in my original post) are entitled "N Signs You May Have HIV" and not "N Signs You May Have leukemia" or "N Signs You May Have lupus" ?

 

[Jonathan Edwards]

@Jonathan Edwards - so having no answer from you to this question, that means implicitly that you are on opinion that a HIV treatment applied to a non-HIV CFS patient is a complete mistake and is of no use?

If you mean something like protease inhibitors, which are designed to interfere with an very specific process relevant to retroviruses, then yes, it would be completely irrational at least. And these things are toxic in the long term. Nobody gives HIV treatment to people with unresponsive leukaemia, so it is hard to see why they should for CFS.

I realise that at some point in history an analogy has been made between AIDS and CFS, even to the extent of calling it CFIDS, but I think that has washed under the bridge now.

 

[Daffodil]

@Jonathan Edwards ......do you think the CFS patients who have responded to antiretrovirals (i know some personally) are responding because the drugs are acting on HERVs, perhaps?

thanks

 

[Jonathan Edwards]

@Jonathan Edwards ......do you think the CFS patients who have responded to antiretrovirals (i know some personally) are responding because the drugs are acting on HERVs, perhaps?

thanks

I don't think we know that anyone with CFS has responded to anything much to be honest - whether rituximab or antivirals or whatever. CFS is probably fairly similar to rheumatoid arthritis in that it waxes and wanes in severity and both doctors and patients put faith in improvements being due to treatments but unless one has proper trials you never know. I personally think it very unlikely that retroviruses have anything to do with CFS. If they did there would be at least a few cases where that was barn door obvious - as in AIDS and HIV. There would be some tissue specific pathology.

 

[ScottTriGuy]

I personally think it very unlikely that retroviruses have anything to do with CFS. If they did there would be at least a few cases where that was barn door obvious - as in AIDS and HIV.

My n=1 as a person living with HIV is that the ARV cocktail did not prevent me from getting ME.

 

[Daffodil]

My n=1 as a person living with HIV is that the ARV cocktail did not prevent me from getting ME.

I am not sure what you mean by tissue-specific pathology, but demeirleir/Lombardi did find HERV activity when they tested gut tissue samples from CFS patients....albeit only 8 samples......

there is evidence of HIV patients having less likelihood of developing diseases such as MS....and there are trials of antiretrovirals going on with MS right now.....and even lupus

so the idea of antiretrovirals helping autoimmunity isn't new...right?
thanks

 

[Daffodil]

@ScottTriGuy ..I have heard of others on HAART who have CFS, too. its confusing for sure. may I ask if you have had the sCD14 test for leaky gut?

thanks

 

[ScottTriGuy]

@ScottTriGuy ..I have heard of others on HAART who have CFS, too. its confusing for sure. may I ask if you have had the sCD14 test for leaky gut?

thanks

I know of others who have chronic fatigue, but not CFS. I have a close colleague who struggled with chronic fatigue for over a decade - a pharmacist (not the countless previous HIV specialist doctors) noted that all his previous / current ARVs had a particular 'ingredient' - so suggested a different ARV (I think Isentress, I'll double-check with him today) and his chronic fatigue lifted. He no longer needs 12 hours of sleep a day.

I was not aware that sCD14 was indicative of leaky gut - but I have responded well to adding butter (and cutting way down on sugars / carbs). I'll see if I can get my doc on board to order the test, she responds well to research so...

I found your PR thread and link in my quick google search...

http://www.catie.ca/en/treatmentupd...tion/importance-soluble-cd14-and-inflammation

I see you couldn't find the San Francisco study, so I emailed the author - he's out of office until next week.

Thanks for heads up.

 

[JES]

I am not sure what you mean by tissue-specific pathology, but demeirleir/Lombardi did find HERV activity when they tested gut tissue samples from CFS patients....albeit only 8 samples......

The problem is that all kinds of viruses have been found from some CFS patients over the last 20 years or so, but the evidence that would link any certain virus to CFS is not strong enough at moment.

Personally I believe that enteroviruses are a much more likely cause for CFS than retroviruses after following up on Dr. Chia's papers. But even his findings aren't (yet) enough to prove that enteroviruses would be the cause or driving factor for CFS.

 

[Daffodil]

@JES dr chia is using some antiretrovirals too, isn't he?

 

[Daffodil]

I know of others who have chronic fatigue, but not CFS. I have a close colleague who struggled with chronic fatigue for over a decade - a pharmacist (not the countless previous HIV specialist doctors) noted that all his previous / current ARVs had a particular 'ingredient' - so suggested a different ARV (I think Isentress, I'll double-check with him today) and his chronic fatigue lifted. He no longer needs 12 hours of sleep a day.

I was not aware that sCD14 was indicative of leaky gut - but I have responded well to adding butter (and cutting way down on sugars / carbs). I'll see if I can get my doc on board to order the test, she responds well to research so...

I found your PR thread and link in my quick google search...

http://www.catie.ca/en/treatmentupd...tion/importance-soluble-cd14-and-inflammation

I see you couldn't find the San Francisco study, so I emailed the author - he's out of office until next week.

Thanks for heads up.

ha! interesting. Raltegravir (Isentress) is what someone I know responded to with CFS....and it is being trialed as an MS drug too. I didn't respond to it though...but did get a tiny bit of help from Tenofovir at one time.

 

[ScottTriGuy]

I started on Raltegravir in November so I'm currently taking 4 ARVs daily...I'm sleeping better, but that's the only change.

My HIV+ colleague confirmed that when he stopped Viramune and started Raltegravir his chronic fatigue lifted.

If ME is caused by a retrovirus, then shouldn't experimental ME treatment with ARVs be a 'cocktail' as is done with HIV patients?

The first ARV, AZT, was only temporarily effective because HIV became resistant to AZT. It was only when patients received a cocktail of 3 ARVs did they stop dying. ( I guess I'm assuming all retroviruses are also able to develop resistance in the presence of a single ARV)

 

[taniaaust1]

@Jonathan Edwards - so having no answer from you to this question, that means implicitly that you are on opinion that a HIV treatment applied to a non-HIV CFS patient is a complete mistake and is of no use?

He basically answered that question when he gave this response

"Treatment tends to have nothing much to do with symptoms except for simple things like pain. It has to do with the disease mechanism. The 'damages in the body' bear no relation to each other in these different conditions."

You are trying to compare AIDs symptoms with ME/CFS ones rather then disease mechanism. To properly treat something, you need to treat it according to disease mechanism..so it probably would be a complete mistake to give ME/CFS patients AIDs treatments based on symptoms being similar.

eg you wouldn't treat a painful leg due to a fracture with chemo drugs or a painful leg due to cancer with a splint. Though the symptom of painful leg is same.

 

[taniaaust1]

If ME is caused by a retrovirus, then shouldn't experimental ME treatment with ARVs be a 'cocktail' as is done with HIV patients?

It isn't known what causes ME..

 

[taniaaust1]

I know of others who have chronic fatigue, but not CFS. .

chronic fatigue should be confused with ME/CFS.. They are completely different illnesses/things.

 

[ScottTriGuy]

It isn't known what causes ME..

Ergo my "if" qualifier.

 

[ScottTriGuy]

chronic fatigue should be confused with ME/CFS.. They are completely different illnesses/things.

Did you miss the word "not"? As in "not to be confused".

 

[JES]

@JES dr chia is using some antiretrovirals too, isn't he?

Not as far as I know, no. But assuming that he did, I suspect it would not be because he suspected retrovirus involvement, but rather because some antiretrovirals might have effects on other viruses as well and/or immunomodulatory effects. He seems 100% focused on enteroviruses in his treatment plan.

 

[Daffodil]

@JES I hear he is using 1 of them but you are right - it is not for retrovirus.

 

[wastwater]

If AIDS destroys T cells and makes a person susceptible to infection,I thought maybe in cfs it's lame T cells that need lots of extra signalling to get going but the side effect of extra cytokines is feeling unwell.Addled T cells.partial T cell immunodeficiency maybe that's more similar to MS i don't know