Can be CFS caused by a HIV-like infection?

[ScottTriGuy]

@ScottTriGuy
CD4 of 900 is very good, better than my 674. When you started ARV's in 2002 what was your level of CD4?
I read about people having CFS with CD4 <350.
My problems started in 2010 and since 2012 I am feeling extreme fatigue, dizziness, abdominal left pain, neurological problems (muscle weakness on arms and foot), problems to focus and work, allergies, infections, soft and painful lymph nodes.
In 2010 my health problems started, first with rash on scalp, then painful lymph nodes and dry cough. In 2012 it became more serious - muscle weakness appeared, chest pain and extreme fatigue which I still suffer today an which disables me from work. Actually this is the point when I did intense Gym activity and swimming and after that could not even walk 300 meters on the street.
In January 2014 appeared abdominal pain on left side and a few months after that neurological problems, dizziness, extreme fatigue. Since 1 year ago I started to observe some kind of soft type of candida on tongue.

@sorin In 2002, the threshold for starting ARVs was 200, so when mine dipped under that, I started on the cocktail including the nasty AZT, ergo the nausea. I know many people who had single digit CD4s when starting meds and are alive to tell about it - the Lazarus effect.

My sister's friend was recently diagnosed with ataxia, some of your neurological stuff is similar:
https://en.wikipedia.org/wiki/Ataxia

@alex3619 I would not be surprised if HIV was implicated as one of the factors in the complexity.

 

[Marky90]

My cd4 is 280 (though i will have to check again this week), but I have had zero infections (of which i know).. I think its possible that it could be a consequence of ME/CFS, or a "regulatory shift" as JE put it.

 

[heapsreal]

In MY case.............I went to an immunologist/cfs specialist back in 1997.......who diagnosed me with CFS.........I was positive for the EBV and also had many specialized tests. The Dr. told me that many of his patients with HIV were similar to those who had EBV. Some of the lab results were similar as well as the symptoms.

I think the reason they dont give titre levels in australia is they cant or wont explain the very high igg titres found in many conditions like cfsme. Some titre levels i have seen on american cfsers tests are really high way above normal and cant be explained away as a normal immune response where one has good antibody production . Also many have shown years later even decades later to have these very high titres after the initial infection.

 

[heapsreal]

It just makes sense that those with low nk function would have problems with viruses but this is always explained away by many doctors, even though its well known in medical circles that nk cells fight viruses and other infections and cancer cells.

 

[alex3619]

It just makes sense that those with low nk function would have problems with viruses but this is always explained away by many doctors, even though its well known in medical circles that nk cells fight viruses and other infections and cancer cells.

And I think fungal infections? NK cells are part of the first response team in the innate immune system. The second response in the adaptive immune system takes time. So, in theory but not proven, a failure of NK cells might increase the time it takes for the immune system to get an infection under control, possibly increasing the severity of infection. This might result in an over-stimulation of B cells, with more antibody production than normal. We need our own reference ranges, not the regular ones.

 

[Daffodil]

@sorin ..i have spent decades suspecting CFS is caused by a retrovirus because everything seems to fit with the actions of a weaker retrovirus. indeed, some HIV meds did help me when I was at my worst....and my CD4 count also reached 350 at one time.

I have read about HIV+ individuals on HAART who also develop CFS, but I used to think that that could be explained by the fact that the particular drugs they were on, were not effective against whatever retrovirus we might have.

Though my experience cannot rule out retrovirus or some other virus as "puppet master", I did get much better on antibiotics that treated Lyme (or possibly some other bacteria?). My CD4 count is now 900. Northern Indians are known to have a lower CD4 count, so it possible that 900 is is a very good value for me (ie..the value of a totally healthy person who is HIV negative).

There are people with severe Lupus and other autoimmune disorders who can have extremely low CD4 counts. (sometimes, doctors even try antiretrovirals in these patients). Lyme patients can also have low CD4 counts. So, perhaps many illnesses can cause destruction of these cells.

I asked my doctor why HIV medications helped me (one in particular named Viread). He theorized that it was acting on the HERV(s?) that are activated in these sorts of illnesses, which can have autoimmune components).

What is interesting to note is, after 3 years of antibiotic treatment, I was able to finally stop taking the Viread. When I tried to stop the drug much earlier on, before the antibiotic treatment, I again became completely bedridden and felt close to death.

Anyway, as I said, this does not rule out virus/retrovirus, because, as I understand it, many who are treated for Lyme/chronic bacteria, relapse once they stop the antibiotics.......maybe something other than bacterial persistence is causing the body to relapse - causing the body to not be able to keep the bacteria in check. Who knows?

 

[heapsreal]

@sorin ..i have spent decades suspecting CFS is caused by a retrovirus because everything seems to fit with the actions of a weaker retrovirus. indeed, some HIV meds did help me when I was at my worst....and my CD4 count also reached 350 at one time.

I have read about HIV+ individuals on HAART who also develop CFS, but I used to think that that could be explained by the fact that the particular drugs they were on, were not effective against whatever retrovirus we might have.

Though my experience cannot rule out retrovirus or some other virus as "puppet master", I did get much better on antibiotics that treated Lyme (or possibly some other bacteria?). My CD4 count is now 900. Northern Indians are known to have a lower CD4 count, so it possible that 900 is is a very good value for me (ie..the value of a totally healthy person who is HIV negative).

There are people with severe Lupus and other autoimmune disorders who can have extremely low CD4 counts. (sometimes, doctors even try antiretrovirals in these patients). Lyme patients can also have low CD4 counts. So, perhaps many illnesses can cause destruction of these cells.

I asked my doctor why HIV medications helped me (one in particular named Viread). He theorized that it was acting on the HERV(s?) that are activated in these sorts of illnesses, which can have autoimmune components).

What is interesting to note is, after 3 years of antibiotic treatment, I was able to finally stop taking the Viread. When I tried to stop the drug much earlier on, before the antibiotic treatment, I again became completely bedridden and felt close to death.

Anyway, as I said, this does not rule out virus/retrovirus, because, as I understand it, many who are treated for Lyme/chronic bacteria, relapse once they stop the antibiotics.......maybe something other than bacterial persistence is causing the body to relapse - causing the body to not be able to keep the bacteria in check. Who knows?

Do u think the viread may have had antibacterial effects also??

Or do u think working on hervs can help free up the immune system so it can treat bacterial infections ? ?

 

[sorin]

Do your symptoms match?




About 5 years ago, but you don't hear much about it these days.




Not as far as I am aware.

My symptoms are common to many diseases. Actually symptoms of CFS/ME are common to many diseases, is nothing specific only to CFS or to this Chinese virus. By the way, why in the last 2 years there are no news about the Chinese virus? If it is spread so easy (saliva) it should have been affected lots of people by now. On the other hand, why is not used HIV treatment on Chinese patients with this unknown virus?

 

[sorin]

Weren't some docs calling this non HIV aids?

Hopefully could be a weaker form of HIV. Some researchers consider it to not be so strong as HIV, it does not develop so fast, and hopefully is not so destructive. I really do not know what to think about this theory.

 

[sorin]

What are the medications that can increase levels of CD4 count?
Another thing I would like to ask is: For a person infected with HIV who does not receive any treatment (suppose he/she does not know is infected) - what is the average life expectancy? I mean how many years from the moment (s)he got infected to death? Is it possible to survive more than 15 years without any treatment?

 

[sorin]

Sorin is, the cause of ME could be a retrovirus similar to HIV;
I had 30 years ago about the low CD4 counts (450) and low NK (test HIV negative), then in recent years returned to normal (+ or 900).
I think if people with ME / CFS did you typing lymphocytes within the first 2 years of onset many of them have these bogus values ......

It, the China syndrome seems a good translation from ME ...

@ Alex3619, I disagree with your thinking, in my life as a patient, I saw several people familiar (family relatives, friends, colleagues ...) have symptoms of ME, which surely have sent me ..... .
A good observer can not ignore: In the dozens of epidemics of the second half of the last century, the B countless families with more than a sick family member, C the increase in cases of ME;
so it is not "the severity of the infection," he status of the immune system to develop the ME, but trivially the germ of ME.

@unto - When your CD4 was 450 did you start any medication? How did you increase CD4 back to 900? Do you think this CFS is contagious, I mean can be transmitted to members of family? Can it be transmitted by sex? A CFS sufferer can put at risk his sexual partner? Can it be transmitted through saliva?

 

[sorin]

My cd4 is 280 (though i will have to check again this week), but I have had zero infections (of which i know).. I think its possible that it could be a consequence of ME/CFS, or a "regulatory shift" as JE put it.

@Marky90 : Did you start any treatment to increase CD4? If yes, what medication?

 

[Valentijn]

Weren't some docs calling this non HIV aids?

One extremely vocal patient calls it that. But the symptoms aren't similar. In fact, I'd expect them to be somewhat opposite. AIDS involves immune deficiency, whereas ME symptoms and research suggest something more in the way of an over-active immune response, such as autoimmunity.

 

[Daffodil]

Not to compl

Do u think the viread may have had antibacterial effects also??

Or do u think working on hervs can help free up the immune system so it can treat bacterial infections ? ?

hi heap. i wouldnt know for sure, but i am guessing that Viread does not have antibacterial effects. i know it is also used in hepatitis B, which shares some structural(?) similarity with HIV.

your second question on working on HERVs....it might help a little, but I think the HERV's might become active later in chronic diseases and exacerbate the situation rather than be a major player....but that is just a very wild guess.

BUT.....there is also the fact that i have heard of 2 people who supposedly recovered (or became significantly better) on Raltegravir and AZT, respectively....and as far as I know, were not on other antimicrobial medication....... lol so its all very confusing.


xoxoxo

 

[ScottTriGuy]

What are the medications that can increase levels of CD4 count?
Another thing I would like to ask is: For a person infected with HIV who does not receive any treatment (suppose he/she does not know is infected) - what is the average life expectancy? I mean how many years from the moment (s)he got infected to death? Is it possible to survive more than 15 years without any treatment?

Depends on many factors, including genetics.

Some, not very many, HIV+ folks are long term non-progressors - they have a viral load but it remains low and their CD4s are normal stable.

Even fewer are elite controllers - they are HIV+ but do not have a viral load.

The vast majority of people infected with HIV and not receiving ARVs would be dead by 15 years.

 

[Daffodil]

What are the medications that can increase levels of CD4 count?
Another thing I would like to ask is: For a person infected with HIV who does not receive any treatment (suppose he/she does not know is infected) - what is the average life expectancy? I mean how many years from the moment (s)he got infected to death? Is it possible to survive more than 15 years without any treatment?

hi sorin. if you don't get HIV treatment, i think the survival time varies greatly...from very little to maybe 10 yrs? probably not more than 15, i am thinking...i am just going by things i heard on the news in the 80's and 90s....

there are those who are called "elite controllers" who can survive long term and maybe to normal life span without treatment, because their bodies are able to control the virus without medication.

xox

 

[Hip]

My symptoms are common to many diseases. Actually symptoms of CFS/ME are common to many diseases, is nothing specific only to CFS or to this Chinese virus.

The Chinese virus has several symptoms that are generally not found in ME/CFS, so by these symptoms you can differentiate (if you want to be more precise about things).

By the way, why in the last 2 years there are no news about the Chinese virus? If it is spread so easy (saliva) it should have been affected lots of people by now. On the other hand, why is not used HIV treatment on Chinese patients with this unknown virus?

Chinese censorship played a role in keeping this outbreak quiet, and this might explain why there is no news about it in recent years. Also, the Chinese official line is that these symptoms are "all in the mind", so patients with the Chinese virus may be treated by psychiatrists, not infectious diseases specialists, and hence would not appear on the radar.

Also, viral outbreaks can and do disappear on their own, so the Chinese outbreak may be winding down.

There is no evidence that the Chinese virus is related to HIV or is a retrovirus, according to studies in China, so there would be no reason to use anti-retrovirals. There were some anecdotal reports in China of the anti-retroviral drug Epivir having some efficacy for the Chinese virus, but apparently Epivir also has effects against enterovirus (Dr Chia uses Epivir for his ME/CFS patients with enterovirus infections).

For people with CFS but HIV negative who reach CD4<200, nothing happens, no diagnostic and hence no treatment. That is something to worry about CFS sufferers.

I don't believe it is something to worry about, because people who have ICL (where CD4 counts go down to less than 300 cells per mm3 of blood in the absence of any HIV virus) — which include the elderly and healthy marathon runners — are given no special treatment.

Apart from ICL, other causes of low CD4 are:

A one-time finding of low CD4+ cells is usually associated with a recent infection and resolves on its own. Alternative explanations for the low CD4 counts include conditions such as blood cancers (aleukemia), treatment with chemotherapy, immunosuppressive medications, or other medications that suppress or kill T cells, infections, and problems with blood production.

Source: Idiopathic CD4+ lymphocytopenia - Wikipedia

Your current CD4 level at 674 cells per mm3 are well within the normal range of 500 to 1500, so nothing to be concerned with, I would have thought. What does your doctor say?

If you want to try to increase CD4 counts, see the medications listed in this post.

 

[Marky90]

@Marky90 : Did you start any treatment to increase CD4? If yes, what medication?

Nope, because I dont have any infections I wont get any treatment..

Apparantyl IL-2 has been used with success in smaller studies, and there are anecdotal reports of LDN increasing the numbers.

 

[unto]

Sorin hello, I have never taken drugs to increase the CD4, they are back
to normal by themselves ....,
I am sick of ME since 1985, unfortunately I transmitted the disease to family, partners and friends ... I am convinced that ME is an illness similar to mononucleosis, it can be transmitted with the saliva, and many other body fluids .... ., I think, from experience, that it is always on, so always potentially contagious, I saw
dela ME symptoms in a person who I met for the first time in 2005, twenty years after my start; although I do not rule out significant differences in infectivity from one patient to another.
good night

 

[heapsreal]

Not to compl

hi heap. i wouldnt know for sure, but i am guessing that Viread does not have antibacterial effects. i know it is also used in hepatitis B, which shares some structural(?) similarity with HIV.

your second question on working on HERVs....it might help a little, but I think the HERV's might become active later in chronic diseases and exacerbate the situation rather than be a major player....but that is just a very wild guess.

BUT.....there is also the fact that i have heard of 2 people who supposedly recovered (or became significantly better) on Raltegravir and AZT, respectively....and as far as I know, were not on other antimicrobial medication....... lol so its all very confusing.


xoxoxo

Would liketo try raltegravir but price is too much. Think its active against herpes viruses. Cmv is one issue for me.

I respond to abx but not sure if its sinusitis or lyme and co like babesia . Just can't afford testing seems easier to just treat??

Cheers