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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Sick but never sick

Forbin

Senior Member
Messages
966
This is from the Columbia University press release (2/27/15) about the Hornig / Lipkin study.
The new research suggests that these infections throw a wrench in the immune system’s ability to quiet itself after the acute infection, to return to a homeostatic balance; the immune response becomes like a car stuck in high gear. “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,” says Dr. Hornig. - See more at: https://www.mailman.columbia.edu/pu...igue-syndrome-biological#sthash.7TlfQP9Q.dpuf

If the immune system is stuck in high gear, it might be so responsive to new infections that they never get the chance to develop into the flu. Of course, the downside of that is that we constantly have the symptoms of ME instead. If this is the explanation though, then it's hard to figure why we would remain "immune" to flu/colds after three years. Perhaps even after the cytokines drop the system can remain hyper-reactive.

I didn't get any kind of flu/cold for almost a decade after I got ME, but, by that time, I had experienced improvement in some symptoms. As other have said, I think getting the flu is actually a sign of improvement.

I also don't really buy the argument that the isolation of being ill keeps us away from coming into contact with viruses. I was not totally housebound for most of the that time and I had plenty of contact with people and crowds. Even so, I didn't get a flu or a cold for almost a decade.
 
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Effi

Senior Member
Messages
1,496
Location
Europe
If this is the explanation, though, then it's hard to explain why we would remain "immune" to flu/colds after three years. Perhaps even after the cytokines drop the system can remain hyper-reactive.
I could be remembering this wrong, but I heard a doctor say after the three year mark the immune system is still stuck in hyper-reactive mode, but because it's been in that mode for so long parts of the immune system also get worn-out. So he said the immune system is both over-active AND under-active. That would explain why treatment is so difficult.
I also don't really buy the argument that the isolation of being ill keeps us away from coming into contact with viruses. I was not totally housebound for most of the that time and I had plenty of contact with people and crowds. Even so, I didn't get a flu or a cold for almost a decade.
Glad you brought this up. I always wondered if I just wasn't getting any colds because I hardly ever see anyone.
 

Mij

Messages
2,353
I don't get/catch the normal flu or cold that's going around, but it seems a viral activation is always around the corner and this is what knocks me down.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I also don't really buy the argument that the isolation of being ill keeps us away from coming into contact with viruses. I was not totally housebound for most of the that time and I had plenty of contact with people and crowds. Even so, I didn't get a flu or a cold for almost a decade.

same here. I have a four year old who goes to pre-school and goes on lots of play dates, and she brings everything home, so her and my wife get loads. I no longer worry about catching colds, if someone says to me "don't come to close, I've got a bad cold" I tell them not to worry, that I'm immune. They normally look at me like I'm crazy. My GP looked at me like I was nuts when I told her I was immune when she clerly had a bad cold but was still working. She asked me what I meant so I explained it to her - she looked like she didn't know what on earth to make of it. She obviously believed me but at the same time I think she couldn't believe it was possible and that she didn't know about it.
 

Sidereal

Senior Member
Messages
4,856
For the first 12 years or so when my ME was mild I had constant colds, flu, bronchitis etc., literally I would catch something every 3-4 weeks; just as I was recovering from one infection/fever the next one would start coming on. Then when the ME turned moderate and later severe I stopped getting normal infections altogether.
 

Raines

Seize. Eggs. I don't know. Zebra. Eighties.
Messages
201
Location
UK
Just to add another yes me too,
I rarely catch anything, I've maybe had five coughs or colds in the last ten years, but when I do get something I consider it a good sign. It's also a nice break, the whole different sick feeling -if that makes sense.

An acupuncturist once told me it wasn't that I wasn't catching things, I was in fact catching everything, instead it was that my body way already too sick to have any sort of response to them.
No idea if that's true or not but it made sense to me at the time.
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
For the first 12 years or so when my ME was mild I had constant colds, flu, bronchitis etc., literally I would catch something every 3-4 weeks; just as I was recovering from one infection/fever the next one would start coming on. Then when the ME turned moderate and later severe I stopped getting normal infections altogether.
Ditto.
 

gregh286

Senior Member
Messages
975
Location
Londonderry, Northern Ireland.
Yea ldn seems to be highly sucessful in some and failure in others.
Maybe it works in same subgroup patiens as rituximab.
It does supposedly boost nk cell function..have the link somewhere.if anyone needs it.
I think you have.to perservere with it as with rituximab takes many months for.b cell washout.
 

dannybex

Senior Member
Messages
3,555
Location
Seattle
I don't know about that last bit. I don't get cold or flu, but I do occationally get stomach bugs and when I have had those I have been very ill with very high fevers.

Interesting. Do the high fevers last for several days to a couple weeks or so? And/or when they resolve, does your stomach infections resolve?
 

Wayne

Senior Member
Messages
4,268
Location
Ashland, Oregon
But I think our response is on all the time, hence an invader doesn't stand much chance of getting any kind of foothold.

Hi @snowathlete

I too think our response is on all the time, but I tend to believe it eventually wears out our immune system so that it only "limps along", allowing various chronic infections to persist in our body. I often go through extended periods where it feels like I'm experiencing a kind of "viral activation", with very little outwards signs, but leaving me ever more exhausted.

I've also come to believe there's a close correlation between immune system function and brain function--whatever affects the immune system affects the brain. -- I have Hashimoto's Disease as well, an auto-immune disease that is part of my overall immune system dysfunction.

Hi @dannybex, I've long believed it was most unfortunate when they changed CFIDS to only CFS. I would guess most people could understand a problem with the immune system not working properly, but totally misinterpret the "chronic fatigue" part. As in, "Gee, aren't we all kinda chronically tired/fatigued?"
 
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Snowdrop

Rebel without a biscuit
Messages
2,933
I also don't get colds. It's not true of everyone with ME/CFS but it is common. I think it is a clue that ought to be pursued properly. In my opinion it is not that our immune system is underactive, but rather, overactive (at least with regard to the parts that fight viruses). Normally you get invaded by a virus and it takes time for your body to mount a response so you get a full blown cold/flu. But I think our response is on all the time, hence an invader doesn't stand much chance of getting any kind of foothold.



This is interesting about LDN. Can you tell me more? I know that LDN rates highly on ME/CFS people's list of things that actually provide some benefit. I also know that it is used in ulcerative colitis with some success as well, and as I have that too I plan to try LDN very soon; perhaps as early as next week.

My GP gave me a Rx for 1.25mg LDN. I had been lobbying him for me to try it for some time. I had my husband take the Rx to a compounding pharmacy in Toronto that was listed on an LDN website. I was given a months worth in the form of capsules.

I didn't want to start with a full dose and I wasn't up to figuring dilution and titration so I eyeballed it by opening the cap and putting about a 1/3 of a cap in water and drinking it down. I noticed a very clear improvement within a few hours of the first dose. It's not really easy to describe.

I have had constant pain for quite some time. I'd say the deep pain is gone. The morning pain and stiffness is relieved. I have to qualify that I have Fibromyalgia for which this drug is labelled in Canada. I have been upping the dose over the course of the week (I started 7 days ago) but I have not yet taken the full 1.25mg dose. I haven't had any bad effects at all so far. But early days maybe although I can't help but feel quite optimistic.

The pain I have now feels quite superficial and easy to cope with. I feel less fatigue--I think because I'm not having to cope with the deep pain. So I have more physical stamina during the day.
The powerful sense I had right after the first dose has gone--I think this is because I simply quickly adapted to the new lessened pain level.

It has not impacted my cognitive dysfunction which has become quite severe (it was funny the first dozen times I called my son by the cats name--we're way past that now). And my sleep is not good-- although I seem to cope better with a lack of sleep. All my other issues are still there but I feel that the pain relief is way past anything I could get from a regular pain reliever. And that means a lot to me.
One other thing I would say is that I could actually feel my body relax somewhat but as I've been more active over the past few days I can feel the tension start to come back. With luck upping the dose might compensate for this otherwise I'lll have to curb my enthusiasm and take more breaks for rest. So finding the 'zone' where I can function is the job for the next while.

I don't quite know what else you may be wanting to know, feel free to ask and I'll try to answer.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I'm in the never-gets-sick camp, except recently when I was improving somewhat, I caught a cold. It felt... really good. As someone states, a "different kind of sick", and it felt like my immune system was working properly for once. But that was for the first few days. My body didn't handle the challenge well, and I ended up feeling far more awful than usual by the end of the illness. Admittedly, it was a doosey that had everyone I knew laid up for a week, so it wasn't the average case of the sniffles.

There is a poll on that in this thread. People might like to put in their two cents.

So the question is:
  • Is our immune system so depleted that we can't really launch a defense?
  • Is our immune system so overactive that we are constantly launching a defense?
I guess which parts of our immune system are active/overactive depends partially on our genetics and partially on how long we've been ill. That magic "three years".

But it matters. LDN has an antagonistic effect on the macrophages' Toll-like receptors. Taking something like GcMAF or lactoferrin, both of which activate macrophages.... what am I missing, here?

-J
 
Messages
50
Location
Germany
I am the same. Never get sick with colds. I had a sudden onset of ME/CFS with something that felt like a constant flu over 4 or 5 months. After this period I have had one or two minor colds in 5 years. I always thought it's weird. My doctor is clueless why that is.

I also have Hashimoto's.
 

digital dog

Senior Member
Messages
646
I used to get loads of coldsores too and now I only get one a year.

I wonder how many people on this forum have had their thyroid antibodies tested. I know in the UK doctors only test T4 and TSH so do not pick up if there is an immune dysfunction. I bet there are rather a lot of us.

Those of you on here with hashimotos, do you take medication for this? I cannot tolerate the medication which was why I thought of trying the LDN.

My worry (and I hope you don't mind trying to answer this) is that I have terrible reactions to different medications. I think an SSRI would quite possibly kill me (through suicide due to akathisia) and I wonder if this LDN works on GABA and dopamine which is also problematic for me.

Similarly (just humour me here) if LDN is encouraging more endorphins to be released into out body, then theoretically couldn't we be just taking a tiny amount of opium based medication? Wouldn't that do the same thing? Are we kidding ourselves that this is something less problematic than taking psychotropics?

Sorry to be a downer. I am very keen to try this drug but petrified at the same time.

Anyone on this forum that had a VERY nasty reaction to SSRI's (theanine, glutamine, 5HTP, fish oil etc) but foune LDN okay?

Ta very much x
 

brenda

Senior Member
Messages
2,262
Location
UK
My UK GP tested for antibodies for me. They were very high but TSH normal so no treatment. Lowered since gluten free. I dare not try LDN. Tried Naturethroid and then T3 but both gave me hyper symptoms even at low doses so take nothing. My thyroid feels enlarged. Last TSH was just under 1.
 

digital dog

Senior Member
Messages
646
Thank you Brenda.
Can I ask how high your antibodies were, what they are now and how long it took for them to decrease with gluten free?
My TSH was 12 for a week but that seemed to be a one off anomaly.
I got very hyper with smallest amount of thyroxine (but had a few good days) and then coming off it I have suffered for five weeks of anxiety and fear...lovely. I hope that I do not have to take another thyroid med. I think I will have to be very ill to go through that again.
I am scared of LDN. I think it could help me (us) though. Why are you scared? Could we not try 0.1mg? It's easy to get online from a reputable pharmacy selling the liquid preparation. It is suggested for hashimotos.
I have just gone gluten free. My digestion seems better but Im just as ill. Hope it reduces my antibodies. I am not cealiac and never seemed to have a problem with gluten but thought best I try this.
Do you take selenium?
 

brenda

Senior Member
Messages
2,262
Location
UK
I take 200 mg selenium. My antibodies were over 1000 but went down to 300 l think on gluten free. I am now dairy free too but have not had antibodies tested. Sorry can't remember how long it took to get them down. Am dealing with so many things. I would be willing to try LDN l guess after l trial choline and tyrosine. Have you thought about tyrosine? It is giving me energy.

I have heard of folk with hashis getting worse on ldn.
 

Raines

Seize. Eggs. I don't know. Zebra. Eighties.
Messages
201
Location
UK
Sorry to be a downer. I am very keen to try this drug but petrified at the same time.

Me too! LDN is top of my list right now, but there are other life stresses going on here, and with my brains cognitive issues, it's hard to be confident I've done the research, thought it through, weighed up the possibilities and come to a reasonable decision.

I find lists helpful, pros, cons, others stories, likely side effects, cost money, cost time, etc

When the things going on here are sorted I will start an LDN list, and try to make my decision.

Your not being a downer, your asking questions, other people are answering, sharing their experiences, and that's good. Not just for you, but for people like me too, also wondering about things and searching the forums to see what people are saying.