Do all people with CFS commonly experience flu like symptoms

[Justin30]

Very rarely do I get flu like symptoms.

Just more brain fog, weakness, blurred vision, high heart rate, cant dont want to move, emotional, sore, hard to talk, etc.

Flu like symptoms were were predominant at onset only.

 

[Seven7]

I got those symptoms by year 5+, Also now I only gets them as a sign of overactive immune system and can be trigger w things like:
Zync over 15mg
Echinacea any amount.
any immune booster med.....

 

[catherinejoy]

If that is anything to do with having ME/CFS, and happening so regularly, it probably would be best to see if as far as work goes if you could may be take a couple of days off each week towards the end of the 2 week period to try to avoid this being triggered off eg work only a week and a half out of every 2.

If this is ME/CFS it could end up getting to the point where that symptom may end up staying with you rather then leaving which would be probably completely disasterous for your work life that happens. My ME/CFS wasnt full time at first and was triggered off regulary with certain things with making a full recovery in between the rounds of it. I really regret not slowing down at that point as maybe it would never have become an ongoing thing.

I think I need to accept that this doesn't have a quick fix and that I need to take it easy. Thanks for your advice

 

[JaimeS]

I got those symptoms by year 5+, Also now I only gets them as a sign of overactive immune system and can be trigger w things like:
Zync over 15mg
Echinacea any amount.
any immune booster med.....

Agreed! Immune 'activators' can cause these symptoms for me.

 

[catherinejoy]

Agreed! Immune 'activators' can cause these symptoms for me.

Sorry I'm new to this, can you please explain what you mean by immune activators?

 

[catherinejoy]

I got those symptoms by year 5+, Also now I only gets them as a sign of overactive immune system and can be trigger w things like:
Zync over 15mg
Echinacea any amount.
any immune booster med.....

So those things you listed trigger it?

 

[JaimeS]

So those things you listed trigger it?

Yes; echinacea and zinc are both reputed to help the immune system fight off pathogens. I sometimes take a blend containing both, if my pathogens are being particularly frisky. However, if I go overboard, I get the symptoms mentioned: very sore lymph nodes (to the point that it hurts to talk), low fever, fatigue worsening, etc.

 

[JaimeS]

Ditto; there was a thread on this called, I think, "Sick but never sick". There's a significant subset of us who never seem to catch anything at all; or don't react immunologically to what we DO catch.

When I think about the pathogens that bother us, they're pathogens that all of the world has, we just can't seem to fight them off like healthies: Candida, Aspergillus, EBV are something that the vast majority of the population has, they just don't have them out of control. It seems as though our ability to recognize new pathogens might be unimpaired, or even boosted, while our ability to 'remember' to fight pathogens we're exposed to seems to be malfunctioning.

Is anyone aware of research into memory B-cells malfunctioning in ME, or memory B-cells decreasing in ME? That would seem a rich avenue for research.

[Edit: yup, this research has been done here:
Extended B cell phenotype in patients with myalgic encephalomyelitis/chronic fatigue syndrome: a cross-sectional study.
http://www.ncbi.nlm.nih.gov/pubmed/26646713

And here:
Characterisation of cell functions and receptors in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).
http://www.ncbi.nlm.nih.gov/pubmed/26032326

First says:

Within memory subsets, a higher frequency of CD21(+) CD38(-) B cells (>20%) was associated with the presence of ME/CFS

CD21 is also called the Epstein-Barr virus receptor for just the reason you'd expect. On B-cells, it's also partially responsible for activation and complete development.

CD38 -- from Wikipedia,

The loss of CD38 function is associated with impaired immune responses, metabolic disturbances, and behavioral modifications including social amnesia possibly related to autism.[5][6]

So, CD21(+) and CD38(-) would imply an activation of the first and a lack of expression of the second? Not sure about that nomenclature.

This first study used patients that met multiple criteria including CCC. [/Edit]

 

[catherinejoy]

Yes; echinacea and zinc are both reputed to help the immune system fight off pathogens. I sometimes take a blend containing both, if my pathogens are being particularly frisky. However, if I go overboard, I get the symptoms mentioned: very sore lymph nodes (to the point that it hurts to talk), low fever, fatigue worsening, etc.

Its such a balancing act!

 

[JaimeS]

Second study says:

• CFS/ME patients exhibited alterations in NK receptors and adhesion markers and receptors on CD4(+)T and CD8(+)T cells.
  
• Moderate CFS/ME patients had:
  • increased CD8(+) CD45RA effector memory T cells
  • SLAM expression on NK cells
  • KIR2DL5(+) on CD4(+)T cells
  • BTLA4(+) on CD4(+)T central memory cells.
    
  • reduced CD8(+)T central memory LFA-1 total CD8(+)T KLRG1
  • naïve CD4(+)T KLRG1
    
  • CD56(dim)CD16(-) NK cell CD2(+) and CD18(+)CD2(+).
  Severe CFS/ME patients had:
  • increased CD18(+)CD11c(-) in the CD56(dim)CD16(-) NK cell phenotype
    
  • reduced NKp46 in CD56(bright)CD16(dim) NK cells.

Whew! That's a lot...

 

[catherinejoy]

Second study says:
Whew! That's a lot...

wow that's like an entirely other language to me! Should print it all and take to the doc

 

[Horizon]

Only my PEM is flu like at times. Generally though i just feel very run down but not flu.

 

[JaimeS]

wow that's like an entirely other language to me! Should print it all and take to the doc

The whole study plus Wikipedia is often way easier to understand than the abstract (which is what I quoted). Each of those has the full-text available, and can definitely be handed to your doctor -- though I would include the most recent study on Rituximab, which shows that B-cell depletion seems to improve symptoms, and has caused remission in two patients who had EBV-related onset.

-J

 

[Seven7]

So those things you listed trigger it?

Yes those are my flu symptoms triggers, for me is a sign of my immune system to be on overdrive (mostly by something I drank / ate, new supplement.... Sometimes I cannot figure out why.I do immune modulators to stop it and back down on all meds until the immune system clams down.

 

[Mary]

Haven't had PEM in a long time (knock wood) but when I did get it I always got flu-like symptoms with it. Feeling like flu symptoms might be coming on is still (always) a barometer by which I judge my ability to go forward or if I should take a break.

@whodathunkit - do you know why you haven't had PEM in a long time? Is there anything you can think of that is helping you with this? PEM is my most intractable symptom. I've improved in several ways - primarily feeling better when I'm not crashed - but I don't seem to be able to increase my energy envelope, still very limited in what I can do if I don't want to crash. Any suggestions would be greatly appreciated!

 

[whodathunkit]

@Mary, my endurance and exercise tolerance skyrocketed after a crash that I think was induced by choline back at the end of 2014, and then subsequent gut therapy with a wide variety of pre- and probiotics. I'm assuming what happened to me happened via modulation of the immune system in the gut and liver, but as to *exactly* what happened...I can't say. I wish I could. All I really know is that Freddd's protocol gave me the motivation and some energy, but not endurance. The choline and gut therapeutics seemed to add the endurance.

I also wish I had something to offer in the way of guidance, but I don't. Pre- and probiotics seem to be a very dicey road for a lot of people with CFS symptoms, especially if there are co-infections present. I never seemed to have much of a viral load or bacterial load (as evidenced by my symptoms when I use various substances that are immune modulators or function as antibiotics), so I'm able to tolerate fairly hefty doses of lots of things that people with co-morbidities and more severe symptoms can't.

I would say that you might get some good idea by reading the Resistant Starch Challenge thread here:

http://forums.phoenixrising.me/inde...ge-is-it-the-key-weve-been-looking-for.26976/

It's a looooong thread but a lot of good information in there.

You might also start researching things like ALA, phospholipids and choline, B2, thiamine, pantethine, and even niacin. These B's all work synergistically and seem to work well for some people busting PEM.

I do wish I had more to offer but I'm just no expert. I know what works for me but as far as what will work for someone else...it's hard to say. I've had at least as many disasters as successes trying to give advice, so don't do it much any more except to say check out this or that to see if it resonates with you. Plus, the more I learn the more I realized I don't know. Further, cognitive dysfunction is not my friend these days.

Good luck!

 

[Mary]

@whodathunkit - thanks so much for your reply! It's very interesting. Freddd's protocol (plus some other things, including P-5-P) have improved my energy, but not endurance. And I have been taking inositol with choline at night for sleep for 4 years or so.

I think I'm sort of like you, I don't react a lot to immune modulators and handle probiotics just fine in general.

I have looked a little at the Resistant Starch challenge thread and never got very far - it didn't seem applicable to me but maybe I wrote it off too quickly. And I never got into it in any depth. So - a little light reading! (hah!) I will take a closer look at it. Your theory about modulating your immune system through the gut and liver is intriguing - it's definitely worth exploring.

I do take all the supps you mention (ALA, etc. - I've been taking lecithin for several years which has phospholipids). The only one I haven't been able to tolerate is B2 - I've tried it a couple of times and each time reacted badly to it. But I take a B complex that has B2 in it. And then I take extra thiamine, pantothenic acid, P-5-P, niacin, and folate and methylB12 of course.

FWIW, I don't have brain fog. I don't know why, am grateful I don't, but there it is.

I really appreciate all your input. And I totally identify with disasters vs. successes! (I seem to spend a lot of time recovering from self-inflicted disasters or, rather, New Learning Experiences )

Thank you again!

 

[taniaaust1]

When I think about the pathogens that bother us, they're pathogens that all of the world has, we just can't seem to fight them off like healthies: Candida, Aspergillus, EBV are something that the vast majority of the population has, they just don't have them out of control. It seems as though our ability to recognize new pathogens might be unimpaired, or even boosted, while our ability to 'remember' to fight pathogens we're exposed to seems to be malfunctioning..

I believe we may have that issue before we even get the ME/CFS. In my case I had severe EBV (put me in bed for a near term of school) 10 or 11 years before I actually got ME. So I think something must of been wrong with ability to fight off that way before the ME.

The big question is.. what is wrong with our immune systems?

 

[whodathunkit]

I have looked a little at the Resistant Starch challenge thread and never got very far - it didn't seem applicable to me but maybe I wrote it off too quickly.

I definitely wrote it off too quickly when it first popped up. I think we all come to things when it's our time.

It's a looong read but lotta good info.

One thing about it...I do think that gut therapy raised my overall internal inflammation levels even while it gave me a huge boost in energy, probably by increasing overall bacteria count (bad as well as good) and possibly by exacerbating an existing candida problem with all the starchy carbs. My cognition worsened a bit after starting it, but not enough to put me off the benefits in energy, if that makes sense.

So I now think my inflammation may have had something to do with biofilms and candida after all (I wrote *that* possibility off for a long time, too), and am addressing them accordingly even as I type this. Candida and biofilms being a bit easier to deal with than bacteria because the main way to deal with bacteria is abx, and you can't specifically target only the bad bacteria with those, especially without knowing exactly what the bad players are. But breaking up biofilms and wiping out yeast/fungus is a little easier simply because you don't have to worry so much about wiping out beneficial players (because as far as we know right now, there aren't any in a candida overgrowth situation). And once the biofilms are gone then supposedly the body's own defenses can come into play again, and do their jobs. We'll see.

Mentioning that not to derail this thread off into a discussion of inflammation and gut dysbiosis, but simply to add a caveat to starting gut therapy. It can be very rewarding but can also beget some problems that may have to be addressed.

Also, to be clear, I'm still a fan of carbs and starch. I eat them every single day and they are the bulk of my diet. I don't think they're the cause of candida. I think carbs and starch are essential and the notion that you have to cut them to treat candida is misbegotten. But if you've got a dysbiotic gut already then adding carbs and starch might feed candida. That's all.

 

[whodathunkit]

The big question is.. what is wrong with our immune systems?

Sadly, I starting to believe that's kind of like asking how many angels can dance on the head of a pin; it's a question with no concrete answer since the answer is almost entirely subjective. For some the answer to that question could lie with genetics...for others could be prenatal stress...and for still others might be cumulative environmental insults. Probably various combos of the three.