1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

No serological evidence for a role of HHV-6 infection in chronic fatigue syndrome ?!

Discussion in 'Latest ME/CFS Research' started by Omar88, Nov 13, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,309
    Likes:
    4,661
    australia (brisbane)
    Maybe part of the reason, when i was getting regular nk function testing i was on antihistamines alot and anti-inflammatories some of the time, maybe there are stronger was to overcome mast cell activation? I regularly take curcumin which has anti-inflammatory properties and maybe can affect mast cells?? but i dont know?
     
  2. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    385
    Virginia, USA

    To my knowledge, tyrosine kinase inhibitors such as Imatinib are the "nuclear option". Usually, however, one starts with both H1 and H2 blockers as histamine has an auto-excitatory effect on mast cells. COX-2 inhibitors such has aspirin may also be used in certain cases to target elevated Prostaglandin D2 and metabolites. Leukotriene inhibitors such as Montelukast may also be used. Cromolyn sodium, a purported mast cell stabilizer, is also used. There is also a a first generation H1 blocker with some mast cell stabilizing properties called ketotifen that many people use.
     
  3. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    I had heard these as well. But I think it is generally accepted that these levels go up during times of stress (I would assume because the immune system gets suppressed at those times). So it's possible that is the case for ME/CFS patients as well, at least in part. Heaven knows we all tend to be under significant stress just from dealing with everything that goes along with this illness.
     
    August59 likes this.
  4. Foggy

    Foggy

    Messages:
    76
    Likes:
    17
    Australia
    Do you have high IgG titres (past infection) or high IgM titres (current infection)? Sounds like your dr doesn't know his Ig's. ;)
     
  5. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    As I understand it, IgM is only for a new infection. A current reactivation of an old infection would still be IgG, unfortunately.
     
    August59, taniaaust1 and heapsreal like this.
  6. Dufresne

    Dufresne almost there...

    Messages:
    367
    Likes:
    228
    I think I remember reading some time ago about even dormant HHV6a releasing an antigen. Anybody recall this study? It's at least a couple years old.
     
  7. soxfan

    soxfan Senior Member

    Messages:
    677
    Likes:
    226
    North Carolina
    It was IgG titer that was so high....Dr. Komaroff is a leading CFS doctor here in the U.S. so I believe he is pretty knowledgeable about this.
     
  8. PhoenixBurger

    PhoenixBurger Senior Member

    Messages:
    174
    Likes:
    123
    You know what astounds me about this discussion? And about doctors who say its not possible to have two different physical reactions to the same virus?

    We have a living, breathing, example that this is false with HSV 1 and HSV 2.

    All of medical science acknowledges that between the two, 80% of the human population is carrying at least one. Yet they also state that something like 80% of that group NEVER have a SINGLE SYMPTOM. And what is different between the two groups? Immune function. Maybe something else.

    One person can have Herpes Type 2 and never have a single outbreak. Another person can have the same virus and have painful outbreaks with flu like symtpoms even muscle spasms all over their body, on a monthly basis, for the rest of their life.

    We have literally millions of living, breathing examples of how a herpes virus can cause sometimes torturous symptoms in one person, and do absolutely nothing in another person. In fact another parallel: The majority have no problems, just like with EBV and CMV. But the minority have MAJOR problems. And there's a *whole spectrum* of shades of gray in between.

    Yet they outright reject the possibility that this phenomenon can exist? Why? What is missing in the brains of doctors? Seriously.
     
    NK17, Hip and ukxmrv like this.
  9. adreno

    adreno 3% neanderthal

    Messages:
    2,443
    Likes:
    1,705
    Tundras of Europa
    Testing for these viral infections seems rather irrelevant, as they do not tell us anything about the cause of ME, and don't even function as a biomarker. Two persons can have the same virus, one sick with ME and the other not.

    I agree with Nanonugs assertion that it's an immunological problem, not an infectious one.
     
  10. PhoenixBurger

    PhoenixBurger Senior Member

    Messages:
    174
    Likes:
    123
    Can someone be "immunocompromised" without HIV?
     
  11. adreno

    adreno 3% neanderthal

    Messages:
    2,443
    Likes:
    1,705
    Tundras of Europa
    In a word, yes.
     
  12. PhoenixBurger

    PhoenixBurger Senior Member

    Messages:
    174
    Likes:
    123
    The boy in the bubble right? And several shades of grey in between.
     
  13. Hip

    Hip Senior Member

    Messages:
    3,113
    Likes:
    2,967

    Well said, PhoenixBurger.

    There are many reasons why the same viral infection might cause severe disease in one person, and no disease at all in the next person. These reasons include:

    (1) Host genetic makeup is a factor that plays an important role in whether a virus causes a disease or not:

    • For example, herpes simplex virus has been linked to Alzheimer's, but only in people who carry the APOE-4 gene (this gene enables the herpes virus to enter the brain). In people without the APOE-4 gene, having a herpes simplex infection is not associated with getting Alzheimer's.

    • In mice, Crohn's disease can be precipitated by a norovirus infection, but this only happens in mice that have a very specific variant of the ATG16L1 gene.

    • Even the HIV virus can have a range of effects: the majority of people will develop AIDS and die if they catch HIV and do not take anti-retroviral drugs. However, some people possess the CCR5-delta32 allele which gives them total immunity to developing AIDS if they catch HIV. The CCR5-delta32 prevents the HIV from entering cells.

    So host genes play a role in determining the effects of an infection.

    (2) Viral genes and serotypes also play a fundamental role in whether the virus causes disease or not:

    Human herpes virus 6, variant B (HHV-6B) is found in nearly all the population, and is considered more benign HHV-6. BY contrast, human herpes virus 6, variant A (HHV-6A) is found in only 3% of the population, and is though to be a far more vicious version of this virus. Nearly all tests for HHV-6 do not distinguish between the A and B variants. So two people could test positive for an active HHV-6 infection, but only one of them may have the A variant, and it is that person with the A variant that is more likely to get a disease like ME/CFS from it. Ref: 1.

    (3) Partial reactivation of viruses. Another important issue with chronic smoldering viral infection is whether these viruses might be just partially reactivated. Some researchers think that partial reactivation of viruses is more problematic than full reactivation, and that diseases like ME/CFS may be caused by partial reactivation:

    • For example: some new evidence suggests that some subtypes of ME/CFS may be caused by partial reactivation of Epstein-Barr virus. Refs: 1 2

    • Then there is the very interesting work of Dr Kazuhiro Kondo in Japan, who has theorized that a partial reactivation of HHV-6 may be responsible for causing ME/CFS, major depression, and bipolar disorder. Ref: 1.

    (4) Two or more microbes may work in tandem in the host body:

    • For example, Chlamydia pneumoniae and cytomegalovirus have symbiotic relationship (Chlamydia pneumoniae processes cholesterol in such a way that favors cytomegalovirus infection). So if you catch cytomegalovirus, you may only get a disease if you already have Chlamydia pneumoniae in your system. Ref: 1.

    In summary: there are many reasons why a viral infection might cause severe disease in one person, and no disease at all in the next person. These reasons include:

    (1) Host genetics
    (2) Virus genetics and subtypes
    (3) Infections where there is partial viral reactivation (which may be worse than full reactivation)
    (4) Two or more microbes may work in tandem to create disease.
     
    NK17, heapsreal and August59 like this.
  14. adreno

    adreno 3% neanderthal

    Messages:
    2,443
    Likes:
    1,705
    Tundras of Europa
    Hip, now you are getting in to something interesting. I think we can agree that we want to find what is unique about ME patients, not what is similar to normal people. The viral infections are not in themselves unique to ME patients (almost everyone has them), so we need to identity the factors that cause sickness in us.

    I would like to emphasize epigenetics as a factor. Previous "experiences" or exposure to the environment cause changes in our makeup. Examples are stressful experiences, diet, vaccinations, illnesses, fitness levels, previous medications, toxins aso. All these factors combined with your genetics make you the unique person that you are.

    Brain scans are a good example of my point. When trying to identify what brain activity is triggered by a stimulus, brain scans during the stimulus are compared to scans of average activity, which is then subtracted from the picture. This leaves us with only the difference (or uniqueness) in activity. This is what we're looking for in ME, and unfortunately this is very complex.
     
    NK17 likes this.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,309
    Likes:
    4,661
    australia (brisbane)
    I think that most of us with cfs/me have low nk function and or cd8 t-cell dysfunction. Having these dysfunctions can open up simple infections into big infections that are hard to treat. Maybe the auto-immune component is at the cause of the immune dysfunctions. Thats how im currently seeing this illness in myself. The immune dysfunctions are hard to treat so next best bet is going after the infections.
     
  16. adreno

    adreno 3% neanderthal

    Messages:
    2,443
    Likes:
    1,705
    Tundras of Europa
    I guess it makes sense to keep infections under control, if you can't fix the underlying immunological problem.
     
  17. Sparrow

    Sparrow Senior Member

    Messages:
    671
    Likes:
    770
    Canada
    I agree. And there's also some evidence that partially or fully reactivated infections may be part of what triggers that immune dysfunction or at least helps to perpetuate it or make it worse. I think the more we can calm things down and take the extra strain off, the more likely the body will be able to adjust itself or respond to other treatments. ...Or at the least, we may feel better in the meantime, without the extra symptoms caused by the viruses themselves.
     
    NK17 and heapsreal like this.
  18. Hip

    Hip Senior Member

    Messages:
    3,113
    Likes:
    2,967
    (5) Location of the infection. Another crucial factor that may also explain why an infection may cause ME/CFS in one person, but not in the next person, is the location of the infection in the body.

    In particular, if an individual catches a virus, and this viral infection is confined to the body, but does not reach the brain, then perhaps that individual will avoid getting ME/CFS. However, if in another individual, the viral infection manages to get into the brain, then this is perhaps when ME/CFS is triggered.


    (6) Autoimmune reaction. Yet another factor that may also explain why an infection causes ME/CFS in one person, but not in the next person, is whether the infection precipitates an autoimmune reaction in an individual or not. Most infections tend to affect an individual's autoimmune status. Indeed, microbial inferctions may be the driving force behind all autoimmunity. ME/CFS appears to have an autoimmune component, and thus it may be that you only get ME/CFS if the infection you caught happens to precipitate a particular type of autoimmune reaction.


    Ah yes, epigenetics may certainly be playing a role in the etiology of ME/CFS.

    Interestingly, the methylation cycle affects epigenetics, because our epigenetic database employs methyl molecules as its "language". These methyl molecules are used to tag the base pairs in our DNA genome, with these methyl tags determining whether a gene gets expressed or not. In this way, our epigenetic database can switch individual genes on and off. I believe if you are under-methylating, this will affect the epigenetic database operation, due to the shortage of methyl molecules.

    The epigenetic database also uses acetyl molecule tags that can be similarly attached onto our DNA genome.

    I just found this interesting slide show on THE ROLE OF EPIGENETICS IN MENTAL HEALTH.
     
    NK17 likes this.
  19. PhoenixBurger

    PhoenixBurger Senior Member

    Messages:
    174
    Likes:
    123
    Hip do you have any theories for those of us who have bodywide muscle spasms and twitching as part of this? Someone keeps mentioning viral infection of anterior horn cells, but there are countless other theories as well.. Clean MRI's clean EMG's clean Nerve Conduction tests. Fasciculations on the scalp, arm, hands, pops and jiggles in legs, back, butt, stomach, tongue, cramping in calf, rigidity ...... in combination with developing muscular pain, aching, burning, exercise intolerance and days of fatigue. All preceded by swollen glands in groin, armpits, and 100% clean blood tests across the board, except for currently active CMV igm. My fatigue is mild at this stage, and manageable with lifestyle changes. But its the spasms and twitching (no tremors) that literally show no signs of abating. Going on 3 months now nonstop. Another theory is sodium/potassium channel malfunction, etc. Perfectly healthy individual one day, the next, all this. I could manage my apparent CFS fine if the spasms weren't constantly torturing me.
     
  20. Hip

    Hip Senior Member

    Messages:
    3,113
    Likes:
    2,967
    I don't much about this, but I know magnesium deficiency is a common reason for muscle twitches and spasms. Magnesium is often low in ME/CFS patients anyway, so you could try taking say 400 mg of magnesium orally each day, to see if this improves the situation.

    Nerve damage might also cause these symptoms, and the nerve repair vitamin par excellence is vitamin B12, in the methylcobalamin form. You could try taking methylcobalamin sublingually each day. You need to leave it under you tongue for a good 5 minutes; it will not be absorbed if swallowed. The recommended brand is Enzymatic Therapy methylcobalamin (recommended by B12 expert Freddd on this forum).

    Muscle twitching and spasms are also common symptoms of an enterovirus infection (ref: 1). Enteroviruses are strongly linked to ME/CFS, so you may have caught an enterovirus. DId you have any bouts of illness (a sore throat, or stomach upset/diarrhea) a few weeks or months before your symptoms began? If so, this might have been when you caught this virus.

    Also look up myoclonus.
     
    Valentijn likes this.

See more popular forum discussions.

Share This Page