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Can be CFS caused by a HIV-like infection?

Discussion in 'General ME/CFS Discussion' started by sorin, Nov 1, 2015.

  1. sorin

    sorin Senior Member

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    Hello all!

    My name is Sorin, a 35 years old man, who is suffering from 2010 of something yet not diagnosed but which have many things in common with CFS.

    Do you think that CFS could be caused by an unidentified type of HIV-like virus? I can see so many similarities between HIV symptoms and CFS symptoms that I was wondering why if CFS is triggered by a "relative" of HIV-virus?

    My CD4 count decreased with about 100 in 1 year (autumn 2014 compared to now).
    My latest results are

    CD3+ CD4+ 32% 674/mmc
    CD3+ CD8+ 50% 1.058/mmc
    CD4/CD8 2:3
    CD3+ CD56+ (NK-T) 13,5%

    CD4/CD8 seems to be inversed (normal is >1)
    CD8 seems to be increased

    Last year (November 2014) I had
    CD4 782
    CD8 1075
    CD4/CD8=0.73

    I am worried about CD4 because it is known that HIV decreases the CD4 count to a level where opportunistic dangerous infections and cancers could appear. I tested several times for HIV and it was always negative, but I am worried that CFS can be the result of a HIV-like infection (not HIV 1 or HIV 2 but a similar virus).

    It is known that when CD4 deceases below 350, as far as I know, for HIV positive people, the antiviral therapy starts, which does not happen in case of CFS HIV negative.
    The same, when CD4<200 then HIV patients are declared to have AIDS and their life is in danger, special protocols have to be applied. 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.

    On the other hand, why is not prescribed antiviral therapy for CFS patients as it is done for HIV? I think it can not hurt, but will have benefits for CFS patients.

    All the best!
    Regards,
    Sorin
     
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  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Hi @sorin,

    I am HIV+ and taking anti-retrovirals with undetectable viral load for over a decade.

    My m.e. onset was August 2012, so ARVs did not prevent me from developing m.e..

    Perhaps its not a retrovirus that's causing our symptoms, but another virus type?
     
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  3. sorin

    sorin Senior Member

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    @ScottTriGuy
    Hi!

    Can I ask you how were you diagnosed in 2012 having CFS? Based on what test? As far as I know, CFS is an exclusion diagnostic - people who test negative for dozens of other diseases (such as HIV, Lyme, MS, etc, etc) are, finally told they have CFS (just to have a name for their disease). Often they are not even told to have CFS but that they are hypochondriac and must visit a psychiatry center.
    What is your CD4 count at the moment?
    Is it possible that your symptoms are an effect of HIV infection?
    Regarding CFS, I think it is caused by a virus since in my case it started with flu like symptoms, painful enlarged lymph nodes, rash on scalp and then developed to extreme fatigue, neurological problems, allergies, etc. Basically it is an immunity problem.
    But can not say what type of virus. A few years ago a couple of scientist published their results saying it is XMRV (Xenotropic murine leukemia) - another virus created in the lab. And then they were forced to withdraw their theory.
     
  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I first experienced acute onset of symptoms on August 9, 2012 - like many others I had many tests that showed nothing. My primary symptom, then as now, is post exertional malaise.

    My CD4s are always around 900. I cannot find any link between HIV and m.e. or ARVs and m.e. in the research literature...nor any other people with both illnesses for that matter so there doesn't seem to be a connection.

    Fatigue is a common side effect of ARVs for some people - depends on the ARVs - I never experienced fatigue related to ARVs - lots and lots and lots of nausea though. I was diagnosed HIV+ in 1998, started on ARVs 2002. I was a multiple national triathlon team member post-diagnosis, so HIV and ARVs didn't slow me down much.
     
  5. Tammy

    Tammy Senior Member

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    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.
     
  6. sorin

    sorin Senior Member

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    @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.
     
  7. sorin

    sorin Senior Member

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    Hi Tammy!
    In my case I tested negative for EBV, HTLV, CMV, HIV and HSV. Do not really know what other type of viruses I can try to test for... IgG for CMV was very high, showing a past infection but IgM was normal showing that there is no present infection.
     
  8. SOC

    SOC

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    Low CD4+ is not a consistent finding in ME/CFS. Many of us actually have a high CD4/CD8 ratio, although that may be due more to low CD8+ cells than high CD4+ cells.

    Antiviral therapy can be difficult to get because most of us don't have very low CD4+ cell count and chronic viral infection is difficult to prove. Top ME/CFS specialists are using antivirals with many of their patients, however. They typically do extensive pathogen and immune testing first to confirm the need for antivirals.
     
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  9. Tammy

    Tammy Senior Member

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    @sorin....I'm not convinced about the tests showing "past" infections equals they are no longer causing problems. To me it just means they can't be picked up in the blood stream at the moment. Any virus could be in hiding so to speak where it cannot be detected. JMO.
     
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  10. sorin

    sorin Senior Member

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    Right, good point, this is what I think too. But the doctors I have consulted just looked for IgG and if that is normal just ignored the rest, so no diagnostic, no treatment :-(
     
  11. sorin

    sorin Senior Member

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    What means "very low CD4"? What threshold value?
     
  12. sorin

    sorin Senior Member

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  13. Hip

    Hip Senior Member

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    Do you think your disease could be the result of the Chinese "HIV-like" virus? Studies found 40% of the infected patients with severe symptoms have low CD4 cell count, as low as 200 CD4 cells per mm3 of blood (normal CD4 counts are in the range of 500 to 1500 cells). These patients also often have a raised CD8 count.

    More info on this virus and its symptoms:
    New HIV-Like Virus in China

    Forum thread on this virus:
    Is it a new disease or its CFS ? | Phoenix Rising ME / CFS Forums
     
  14. SOC

    SOC

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    Sorry, I don't think there's any published research at that level of detail. If you want to look, Brenu and Marshall-Gradisnik at Griffith Health Institute, and Klimas and her team at the Institute of Neuroimmune Medicine have done the most research on immunology in ME/CFS. Neither group has reported low CD4+ cells as a common finding, afaik.

    I believe some patients have reported low CD4+ count, but not often as low as 350. You can do a Google Site Search for CD4 here at PR to see what CD4 numbers and CD4/CD8 ratios people are reporting.
     
  15. SOC

    SOC

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  16. sorin

    sorin Senior Member

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    Hi!
    I really do not know. Do you know when this Chinese "HIV-like" virus was first reported?
    And what can be done? Is any treatment available?

    Regards
    Sorin
     
  17. Hip

    Hip Senior Member

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    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.
     
  18. alex3619

    alex3619 Senior Member

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    There is a case to be made that HIV itself is yet another virus that might trigger ME. In dicussions over the last few years about the 2 day CPET, which might be diagnostic of ME, there was one case in Holland of someone who was HIV positive and showed the indicative energy crash on day two of the CPET.

    Known acute (lytic) viral infection is very unlikely to be a cause of ME. Other viral lifecycles, or unknown viruses, are still a possibility. The most likely hypothesis though is that many pathogens, including bacteria, fungal etc., can derange the immune system or other systems and lead to ME. Or they trigger another problem, creating a weakness. Etc.

    Pathogens that produce a CFS-like syndrome in a sizable percentage of patients include influenza, polio (which is an enterovirus), SARS, giardia, and the Lyme and Q fever diseases. Some mold infections are also strong suspected. According to the Dubbo studies, and a new one is in progress apparently, the most powerful indicator of possible ME developing is the severity of the infection. Not the pathogen, the infection, though more severe pathogens are more likely to result in severe infections. So the host plays a part too. Genetic issues, nutritional deficiencies, and co-occurring risks, diseases and disorders may make someone more susceptible to more severe infections, and so higher risk.

    So the answer is if you have a severe infection, and probably of any type, it might create an ME like syndrome. There is some risk though that post viral syndromes that are not ME will be confused with ME.
     
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  19. minkeygirl

    minkeygirl But I Look So Good.

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    Weren't some docs calling this non HIV aids?
     
  20. unto

    unto Senior Member

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    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.
     

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