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Elevated EBV, HHV 6 -- what does this mean?

heapsreal

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Would the work published by Hornig et al earlier this year be relevant here?

“It appears that ME/CFS patients are flush with cytokines until around the three-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop.” - Hornig

Most studies don’t distinguish between short and long-term patients. If testing for pathogen activation is based on immune response, it’s presumably going to be a very different story for the two subgroups. Wouldn’t this make attempts to generalise about immune activity and the pathogenic activity it indicates very problematic?

Perhaps this explains why long-term me/cfs sufferers with only moderate test signatures for viral activation may find antivirals helpful? If their immune systems are in a state of burn-out, the antiviral may be doing what the autoimmune system can’t. Subsequent testing might show little change in cytokine activation, even if the patient is feeling a lot better. ???

Sidenote: as well as routine PEM episodes, I sometimes get longer, slow motion crashes. I’ve just been through one lasting about three weeks. These invariably involve swollen glands. Viral?

ps. pls don’t shout at me if the above is nonsense! I’ve been following this quite demanding thread because it’s very instructive. My remarks are more an attempt to get to grips with this than assertions.


Make sense to me. I find my symptoms are different now after 13yrs compared to the first few years.

the last 12 months my insomnia isnt as bad although not perfect but im finding im becoming a more drowsy tired than a tired but wired, maybe a cytokine change.

i think your right about immune exhaustion . If i stop antivirals i get viral symptoms etc sooner after stopping than i once did and last time i took a break from avs was when i got shingles and still ongoing issues for last 5 months. So no av breaks for awhile .

Another thing I noticed with myself and others is increased sinusitis probably post the 3year mark. But thats just an observation .

thanks for bringing up the less than greater than 3 year study. Most of us can relate to it.
 

Mij

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@sarah darwins I do think the swollen glands is viral.

I've had swollen glands off and on for the past 4 months, bouts of vertigo and weird weakness/fatigue/stiffness in my legs. I think I may have had mono.

I will also mention an observation I made concerning PEM in the last 4 months.

Two months ago I had difficulty walking, I knew I was dealing with a viral infection so I took it easy.

One month ago I went for my usual power walk (one hour). I felt completely fine until 18 hours later when I started experiencing extreme muscle fatigue in my legs, major cramps in my calves. I could not stand or walk for 4 days. I was stunned because of the delayed 18 hour reaction- it took me totally off guard. This was not the distressing PEM I normally experience in the last 18yrs from when I go over my energy envelope. I know exactly what my 'envelope' is so I've been able to avoid it for a long time.
This in my opinion was not PEM even though it was delayed. Interesting! I've not experienced this before.
 

sarah darwins

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@sarah darwins I do think the swollen glands is viral.
Thanks, Mij. It's what I've assumed. I did experiment with Olive Leaf Extract during my recent episode, partly because I quite recently tested high (about 4 times top of normal range) for one of the HHVs, and people here had reported that OLE helped.

I got what seemed to be a fairly strong Herx reaction, part of which was significant neck pain — so I had swollen glands in my neck and another form of neck pain!

The Herxing could be from something else. I've tested positive for a few things and have very messed-up gut flora. After 5 days with the OLE I stopped, on the basis that I really didn't know what I was doing. I'm currently regrouping and studying some more.
 

Eeyore

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@sarah darwins - That's an interesting point. I'd argue all ME studies from this point forward should stratify by duration of infection, as we could very well be missing things if we do not. I'm not convinced it would demonstrate any differences with regard to viruses - my own lab work didn't change in that sense - but that was a great paper and it's worth investigating the idea I think. Fortunately, the most ardent pathogen-seekers are probably the same group, so they will certainly have this in mind.

My crashes definitely tend to be slower motion. I sometimes have bad days and good days randomly interspersed, but there is also a broader time arc as well where I'll feel better or worse for months or years. I've been in a very bad relapse since March of 2014.
 

Eeyore

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Pre-existing immunosupression wouldn't be the only reason to have an adverse reaction to vaccines. Hence I'd probably stay away from vaccines as much as is reasonable while I have ME, with the additional assumption that live vaccines would provoke the same mysterious effects in us as the flu vaccines.

@Valentijn - I agree that pre-existing immunosuppression would not be the only reason to have an adverse reaction to vaccines, and in fact I'd go further and say that reactions to non-infectious vaccines (inactivated influenza) and recombinant (Hep B) would suggest another mechanism is in play.

it may be that any immune stimulus causes problems. It might also be the adjuvants in the vaccines. I tend to believe that live, attenuated vaccines are safer, as we all experience mild infections all the time (most of which we do not notice). It seems therefore they are unlikely to cause a severe relapse. When we use inactivated vaccines, we have to amp up the body's immune response dramatically or we won't get enough response.
 
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I tend to believe that live, attenuated vaccines are safer, as we all experience mild infections all the time (most of which we do not notice).
Maybe ... but I'd rather see some ME research involving live vaccines before I start snorting FluMist :p

In fact, such research might be extremely interesting. How do ME patients and healthy controls react to inactivated vaccines versus live vaccines? And FFS, a study into the more exact nature and duration of the ME reaction to inactivated flu vaccines is pretty long overdue :rolleyes:
 
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Mij

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Thanks, Mij. It's what I've assumed. I did experiment with Olive Leaf Extract during my recent episode, partly because I quite recently tested high (about 4 times top of normal range) for one of the HHVs, and people here had reported that OLE helped.

I got what seemed to be a fairly strong Herx reaction, part of which was significant neck pain — so I had swollen glands in my neck and another form of neck pain!

The Herxing could be from something else. I've tested positive for a few things and have very messed-up gut flora. After 5 days with the OLE I stopped, on the basis that I really didn't know what I was doing. I'm currently regrouping and studying some more.

I already have neck and shoulder blade pain since this viral infection started., it comes and goes. I'm taking a high potency freeze dry royal jelly. It's supposed to have immune modulating effects. Interesting you mention OLE, I was considering buying this recently. I was looking into the East Park Research brand. Which one are you taking?

I know how you feel about stopping supplements when you feel symptoms, when something new starts up I'm . . .:nervous: . . . and I stop. I've had negative reactions to immune modulators so I'm careful.
 

Eeyore

Senior Member
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595
@Valentijn - I'm really pro-vax and suggest vaccines to family/friends. However, two (maybe 3) of my major relapses have corresponded in time to inactivated vaccines, although my initial onset was postviral, probably enteroviral based on symptoms, testing, and seasonality.

If I needed to take a vaccine, I'd take the live attenuated over the adjuvant boosted recombinant or inactivated - but I agree - it's not clear yet how we react differently.

I bet we really do react differently to vaccines. I read one study that showed no difference in antibody titers produced, but that doesn't mean we have the same reaction across the board. I *think* this was to an inactivated vaccine, but I'm not certain.

My PCP - who provides free vaccines to all her regular patients and encourages them for all - doesn't think I should get more. She is a very mainstream scientific doctor (not an ME doc, although she's wonderful) - and she follows science, but she also doesn't ignore what's right in front of her.

i personally found it very hard to accept that vaccines caused a problem, so kept getting them. Only now, decades after my initial onset, am I getting cautious on this. My scientific brain keeps telling me there is no evidence to not take them - but something happened to me with the last one.

On the other hand, I did the Hep B vaccines in college (3 shot series), and I don't recall having any unusual reaction to them or feeling worse after. This was post-ME onset. So I don't know... Also as a kid I got all the normal vaccines and was a healthy child. No one else in my family seems to react badly to vaccines.
 

sarah darwins

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Cornwall, UK
Interesting you mention OLE, I was considering buying this recently. I was looking into the East Park Research brand. Which one are you taking?
Mij, I was taking Swanson liquid OLE. I chose it as a compromise between reviews/cost. I was only taking half dose, but it was unquestionably doing something, so I'd say it's fairly potent.
 

Eeyore

Senior Member
Messages
595
My ups and downs tend to be long.

I'm better now than I was in March 2014, but (much) worse than I was 2 yrs ago.

I have day to day variation too, sometimes associated with obvious triggers.

When I'm doing really well, I can do moderate exercise and not get sick from it, although I can't sustain it in the way other people can. Even then the next day I probably have some GI issues in the morning. When I'm bad, I can't do much at all, and I'm more cognitively affected.

For example, when I was young, I loved to ski. When I felt good a few years ago, I tried it - I just couldn't sustain the energy to do it. I tried to force it and lasted an hour or so but it was not fun and I was just in pain, so I haven't tried again since. I think we forget what it feels like to feel normal... even when we think we're good, we're not back to normal. There are studies that have shown that even self-identified recovered ME patients are not truly recovered. I suspect my mom is in this category.
 

heapsreal

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Maybe ... but I'd rather see some ME research involving live vaccines before I staimmunity ing FluMist :pappreciate if sct, such research might be extremely interproblems . How do ME patients and healthy controls react to inactivated vaccines versus live vaccines? And FFS, a study into the more exact nature and duration of the ME reaction to inactivated flu vaccines is pretty long overdue :rolleyes:


Aussie giffith uni cfs group did a study on flu vaccine. I cant recall the details but i think they found that it didnt increase immunity , but there were no adverse effects from it either.

having problems copy and pasting on my phone this study. It appeared cfser did feel unwell compared to controls and was a different cytokine pattern.

appreciate if someone else could copy and paste this study.
 
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SOC

Senior Member
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If a person is already less immune competant, than a vaccine with a live virus seems like a not-so-good idea.
Most top ME specialists seem to agree with you and advise against live virus vaccines, although they often suggest killed virus vaccines if you tolerate them.
 

Violeta

Senior Member
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Aussie giffith uni cfs group did a study on flu vaccine. I cant recall the details but i think they found that it didnt increase immunity , but there were no adverse effects from it either.

having problems copy and pasting on my phone this study. It appeared cfser did feel unwell compared to controls and was a different cytokine pattern.

appreciate if someone else could copy and paste this study.

This one?

http://www.scirp.org/journal/PaperInformation.aspx?PaperID=24744

he Effects of Influenza Vaccination on Immune Function in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
 

Eeyore

Senior Member
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595
Flu virus is (usually) inactivated - so if ME patients feel worse after getting flu shots, then it's probably due to immune stimulation and not due to immune suppression being unable to fight an infection.

Nasal flu vaccines are (I think always) live attenuated, but most people don't get those.

I am very pro vax in general - but I think there is something worth looking at with ME patients and vaccines. The problem is that anyone who believes they are going to make the patient ill will have ethical issues with giving them.
 
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Aussie giffith uni cfs group did a study on flu vaccine. I cant recall the details but i think they found that it didnt increase immunity , but there were no adverse effects from it either.
Actually it was the other way around:
Griffith Uni said:
While vaccination may protect CFS/ME patients against influenza, it has the ability to increase cytotoxic activity and pro-inflammatory reactions post vaccination. The role of Tregs in promoting a toxic effect at 28 days post-vaccination in our patient group cannot be ruled out.
So there's probably immunity resulting, but also still some definite weird-ass stuff happening with our immune system 28+ days later. The weird-ass immune stuff was also accompanied by subjectively feeling worse.
 

Eeyore

Senior Member
Messages
595
@Valentijn - This would seem consistent with what I'd expect. For example, I had the hep B vaccine in college (over 20 yrs ago probably now) and was recently tested for immunity - and I remain immune. So vaccines by and large do work in us.

In fact, even IF we found elevated titers to viruses, that would not mean that we have elevated levels of those viruses. It would mean we have a superior immune response (at least measured on that parameter). It could imply we have a superior ability to produce antibodies, or that other parts of the system are not working as well and that antibodies are compensating.
 

Violeta

Senior Member
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Or it could imply that for an unknown reason some of our bodies are producing abnormal levels of antibodies to an abnormally high number of pathogens.

There is little superior in that, only abnormal.
Thank you for that, good logic is so appreciated and a breath of fresh air to the mind.