Sick but never sick

[Rick Sanchez]

Very interesting discussion with this thread.

Also interesting because it matches some of the research that has recently been done on the illness.

I always joked to my school friends that I had AIDS when I first started having CFS. I would simply catch everything around. Once around the 2-3 year mark though, I simply would not get ''really'' sick. I don't even remember the last time I have had a fever.

A lot of people in this thread have some sort of point where their CFS went from causing them to constantly be sick, to never ''really'' being sick (no fevers), and it seems to often occur around the 2-5 year mark.

This is from the Columbia University press release (2/27/15) about the Hornig / Lipkin study.


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.

Yes, I also have a difficult time wrapping my head around this one. From my personal experience and from what I have read in this thread, the first 3 years seem to feature what is an under active immune system, whereas the years after that feature an overactive immune system.

For example, I have noticed that I have developed a lot of allergies (I never had allergies as a child, ever), and that I have almost chronic inflammation in my nose / mouth after the 3 year initial CFS period.. This points to what is an overactive immune system after the 3 year period.

Some researchers are talking about ''immune-system-exhaustion'', after the 3 year period for CFS sufferers, but what does this mean? AIDS patients who had a deficient immune system would still get fevers if I recall correctly, although we do not.

Then again, I will admit all my knowledge on the subject is of a very bro-science-esque nature, and I am feeling very drowsy at the moment .

 

[JaimeS]

Bro-science!

I definitely had the react-to-everything, react-to-nothing pattern. Now, I'm really not sure if the react-to-nothing part of it is because my immune system has given up the ghost and refuses to produce signs an infection is happening (fever? What fever? Let it join the microbiome! We're an open, friendly community! We don't discriminate!)

OR

If my immune system is constantly spraying my insides with a machine-gun going "yippie kiyay mother$*(Uer"?

How's that for bro science?

Hornig goes by the depletion model, tho: her study shows that predominantly pro-inflammatory chemicals are high in early-illness sufferers, and low in later sufferers.

[EDIT: I will say that occasionally the little suckers wake up, though, and it's not always pleasant. Once, I was just kind of chillin', except that the coffee I'd just drank tasted a little off. Seriously, that was IT. Within 15 minutes my fever had spiked from 97.8 to 103. THAT IS NOT A FUN EXPERIENCE, BTW. I DO NOT RECOMMEND.)

-J

 

[Rick Sanchez]

Bro-science!

I definitely had the react-to-everything, react-to-nothing pattern. Now, I'm really not sure if the react-to-nothing part of it is because my immune system has given up the ghost and refuses to produce signs an infection is happening (fever? What fever? Let it join the microbiome! We're an open, friendly community! We don't discriminate!)

OR

If my immune system is constantly spraying my insides with a machine-gun going "yippie kiyay mother$*(Uer"?

How's that for bro science?

Hornig goes by the depletion model, tho: her study shows that predominantly pro-inflammatory chemicals are high in early-illness sufferers, and low in later sufferers.

[EDIT: I will say that occasionally the little suckers wake up, though, and it's not always pleasant. Once, I was just kind of chillin', except that the coffee I'd just drank tasted a little off. Seriously, that was IT. Within 15 minutes my fever had spiked from 97.8 to 103. THAT IS NOT A FUN EXPERIENCE, BTW. I DO NOT RECOMMEND.)

-J

-J

Bro-science?

This sounds like a peer reviewed article to me!

I will admit I am a believer in the yippie kiyay theory though. From reading everyones exprience in this thread, including my own, this just seems to make so much more sense!

 

[soxfan]

I am never sick either..last time I had a cold was 2008 and it was during a time when I felt like I was in remission. I was feeling well..had refreshing sleep...working again.

I haven't had a cold...flu...etc since then and I also feel as though the remission ended about 8 months later..

I worked in a pharmacy until 2013 and even being around sick customers daily I never caught anything.

 

[digital dog]

I also feel much better with a cold. I got flu ten years ago and felt much better. Proper debilitating flu (not a week long cold) but it was a relief.
What sort of F****** up illness is this when flu is a welcome change?

 

[halcyon]

I've not had the subjective experience of another infection since the initial infection that triggered my ME. I say subjective because I know for sure that I have had at least one new infection since ME onset due to an extremely well timed lab test that showed I had an acute coxsackie B infection with a serotype I hadn't previously been exposed to. I experienced no new symptoms during this time but did experience a transient worsening in many of my existing ME symptoms, most noticeably the POTS symptoms.

 

[picante]

Wow, what an interesting thread. Look what you started, @digital dog!

I never get currently circulating colds/flu/viral illnesses. And I dance tango, so there are opportunities to catch germs. But nothing in the 23 years since my EBV-triggered metabolic crash. Just shingles in 2012, which is latent varicella getting reactivated. And possibly my EBV is getting reactivated, since those antibodies are still in the stratosphere.

Hashimoto's -- Yes.

The immune system isn't 'deficient' as some claim, it's dysfunctional. The th1-th2 balance is messed up. Never getting 'real' colds or flus is one of the key, classic symptoms.

Since our exhaustion is neurological, I've been wondering whether this immune dysfunction is also from a neurological problem.

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! I picked up a gut pathogen last spring at a folk dance gathering. No fever, but I sure threw up a lot. A few other people were sick after the gathering, including my husband. It's the first actual communicable illness I've had in over 20 years -- although I suppose it might have been food-borne.

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?

Yes, confusing.

Those of you on here with hashimotos, do you take medication for this?

Yes, thyroid hormones. On T3-only, my TPO antibodies went from over 500 to a steady 85-95 and remained there for 7 years. Just this summer they were down to 59, which may be from stopping vitamin D or possibly from adding a little T4.

This seems to be my experience. In the past six years I have had two or three "four-hour colds". I wake up with my nose running like an open faucet, etc. Then by noon it's completely gone. It's a very odd experience.

It may be an allergy. Every time I've had what I thought was a cold, it has turned out to be a respiratory allergy or irritant.

With all the reports of Hashimoto disease on this thread I thought, just how many of us have this disease? It seems like something the CDC must have researched. Apparently no one in the entire research field has ever asked this question. I can find nothing on Pubmed.

Typical.

I've not had the subjective experience of another infection since the initial infection that triggered my ME.

How long has that been?

 

[halcyon]

How long has that been?

Getting close to two years.

 

[Tammy]

What sort of F****** up illness is this when flu is a welcome change?

A really really F***** up one.

 

[picante]

What sort of F****** up illness is this when flu is a welcome change?

I have a strong reaction to those signs they put up in the fall: "Get Your Flu Vaccine Here!"

 

[slysaint]

People keep saying to me 'have you had your flu jab ?'.. Nooo!
Before ME, I used to catch any bug going around. But apart from chest infection like symptoms, and allergies, I haven't had a real cold in nearly 14 years.

 

[PatJ]

But six months of LDN did nothing for me, good or bad, so I gave it up.

I've been researching LDN lately before trying it. Apparently at least three things can cause a non-response or poor response with LDN: taking it in the morning (works for some, but not others), low vitamin-D status, and manufacturer quality. More information can be found here.

I'm another one who is cold and flu free. Last flu was 2004, last cold in 2007, with one exception: after two months on Freddd's treatment I got a coldy/fluey hybrid sickness that wiped me out for 3 days. Freddd and a few others have mentioned they started getting colds and flu again after several months on the treatment.

In the first 2-3 years with CFS I frequently had what I thought of as 3 hour flu episodes. Each passed through like a storm and then quickly faded away.

 

[Rick Sanchez]

Ok. From having been observing my body for the last 3 weeks with the utmost scrutiny I now think that we do in fact get colds and flus, but our bodies are simply too weak to launch a proper defense, which is why we don't get the symptoms.

Instead of actually having symptoms of a cold or a flu we simply experience something like a crash.

This is my theory, because of what I have been experiencing the past years, when I had what seemed like an illness induced crash.

For example this month I was feeling pretty good until I started to get cold / flu like symptoms which went away after less than an hour. What I did experience though was my body had some feeble attempt at creating mucus to fight off the disease. I was only able to create mucus for one day, after that my body just crashed and sorta gave up. I have now been crashing out for 2 weeks with tiredness, mind fog and shortness of breath.

This would also explain why when we write in this thread that we do in fact experience a cold / flu once in a while, it is properly because we are actually in remission / feeling better, and our body is therefore able to launch a proper attack for once. So it isn't so much that we feel better when we get a cold / flu, it is that we get the symptoms of a cold / flu when we are feeling better

/MegaBroScience over

 

[MEKoan]

Just want to add my experience to this discussion. My illness started in 1979 and I have had 1 maybe-flu and 0 colds in the 37 years since. I would love to know why that is and I'm sure it's a major clue as to what's going on with us.

 

[Mel9]

Just want to add my experience to this discussion. My illness started in 1979 and I have had 1 maybe-flu and 0 colds in the 37 years since. I would love to know why that is and I'm sure it's a major clue as to what's going on with us.

I seem to be the same
At Easter, everyone caught a cold except me.

 

[Crux]

Increased Nitric Oxide production might be involved with resistance to certain viral and bacterial infections.
http://www.ncbi.nlm.nih.gov/pubmed/15643342

But if someone is producing too much, that's when things can go awry.

 

[JaimeS]

I wanted to add an update. I began taking an immune-activating supplement and the results weren't pretty.

The product was Buried Treasure Liquid Nutrients, ACF Fast Relief (for 'Rapid Immune Recovery'). IRL -- that is, for people who aren't us -- it's probably meant to be taken when you feel a cold coming on.

So at first it felt great. I sometimes have mouth-grossness after abx use, and that cleared right on up, despite the fact that there's some sugar in the blend.

Awesome! I took it more often.

Then.

THEN the symptoms of early illness began to come back. YOU KNOW: those hyper-active immune symptoms of the first two years or so! I shook like a leaf, I was tired and depressed (I had emotional symptoms early on that dissipated after the first few months of acute illness). I ran a fever for the first time since the end of my acute stage. This stuff switched my immune system back on! (Or back up to 11.)

I'm thinking maybe, just maybe, if I lower the dose and ramp it up over time I won't get those distressing symptoms caused by the lights coming back on. As always, everything we do is an experiment, but this one was interesting.

FYI, ingredients:

• Vit C (1000mg)
• Citrus bioflavonoids (300mg)
• Rutin (50-mg)
• Zinc gluconate (15-mg)
• Echinacea purpurea (600mg)
• Ligusticum porteri (osha) (100mg)
• Usnea barbata (100mg)
• Elderberry (200mg)
• Goldenseal (200mg)
• Myrrh (100mg)
• Thyme (50mg)
• Ginger root (100mg)
• White willow bark (300mg)
• Purified silver (30mcg)

This is all based off of a 30-mL dose.

From an herbal perspective, this is 'supposed' to be immunomodulating, not immunostimulating in its entirety. I've certainly taken vit c, zinc, and silver w/o getting these symptoms, so it's the herbs that made the difference, or the formula is more than the sum of its parts -- that is, one or more components increases the uptake or effectiveness of the others.

Just an FYI, I'll let you know how it goes (and if it goes).

-J

 

[frog_in_the_fog]

From an herbal perspective, this is 'supposed' to be immunomodulating, not immunostimulating in its entirety. I've certainly taken vit c, zinc, and silver w/o getting these symptoms, so it's the herbs that made the difference, or the formula is more than the sum of its parts -- that is, one or more components increases the uptake or effectiveness of the others.

Remedies hardly ever work for me the way they should for most. I am naturopathic doctor's worst nightmare, or is that goldmine.

Your experiment is useful information for the rest of us, thanks. Good luck in finding your immuno balance!

 

[Mel9]

I wanted to add an update. I began taking an immune-activating supplement and the results weren't pretty.

The product was Buried Treasure Liquid Nutrients, ACF Fast Relief (for 'Rapid Immune Recovery'). IRL -- that is, for people who aren't us -- it's probably meant to be taken when you feel a cold coming on.

So at first it felt great. I sometimes have mouth-grossness after abx use, and that cleared right on up, despite the fact that there's some sugar in the blend.

Awesome! I took it more often.

Then.

THEN the symptoms of early illness began to come back. YOU KNOW: those hyper-active immune symptoms of the first two years or so! I shook like a leaf, I was tired and depressed (I had emotional symptoms early on that dissipated after the first few months of acute illness). I ran a fever for the first time since the end of my acute stage. This stuff switched my immune system back on! (Or back up to 11.)

I'm thinking maybe, just maybe, if I lower the dose and ramp it up over time I won't get those distressing symptoms caused by the lights coming back on. As always, everything we do is an experiment, but this one was interesting.

FYI, ingredients:

• Vit C (1000mg)
• Citrus bioflavonoids (300mg)
• Rutin (50-mg)
• Zinc gluconate (15-mg)
• Echinacea purpurea (600mg)
• Ligusticum porteri (osha) (100mg)
• Usnea barbata (100mg)
• Elderberry (200mg)
• Goldenseal (200mg)
• Myrrh (100mg)
• Thyme (50mg)
• Ginger root (100mg)
• White willow bark (300mg)
• Purified silver (30mcg)

This is all based off of a 30-mL dose.

From an herbal perspective, this is 'supposed' to be immunomodulating, not immunostimulating in its entirety. I've certainly taken vit c, zinc, and silver w/o getting these symptoms, so it's the herbs that made the difference, or the formula is more than the sum of its parts -- that is, one or more components increases the uptake or effectiveness of the others.

Just an FYI, I'll let you know how it goes (and if it goes).

-J

I am suffering my first cold in many years .
I have been on antibiotics for Borrelia and was feeling marvellous, showing that the antibiotics were winning the fight against the bacteria.

But I guess my newly revitalised immune system is now fully able to fight this virus. Great, but now feel awful.

 

[JaimeS]

I wanted to add an update. I began taking an immune-activating supplement and the results weren't pretty.

The product was Buried Treasure Liquid Nutrients, ACF Fast Relief (for 'Rapid Immune Recovery'). IRL -- that is, for people who aren't us -- it's probably meant to be taken when you feel a cold coming on.

So at first it felt great. I sometimes have mouth-grossness after abx use, and that cleared right on up, despite the fact that there's some sugar in the blend.

Awesome! I took it more often.

Then.

THEN the symptoms of early illness began to come back. YOU KNOW: those hyper-active immune symptoms of the first two years or so! I shook like a leaf, I was tired and depressed (I had emotional symptoms early on that dissipated after the first few months of acute illness). I ran a fever for the first time since the end of my acute stage. This stuff switched my immune system back on! (Or back up to 11.)

I'm thinking maybe, just maybe, if I lower the dose and ramp it up over time I won't get those distressing symptoms caused by the lights coming back on. As always, everything we do is an experiment, but this one was interesting.

FYI, ingredients:

• Vit C (1000mg)
• Citrus bioflavonoids (300mg)
• Rutin (50-mg)
• Zinc gluconate (15-mg)
• Echinacea purpurea (600mg)
• Ligusticum porteri (osha) (100mg)
• Usnea barbata (100mg)
• Elderberry (200mg)
• Goldenseal (200mg)
• Myrrh (100mg)
• Thyme (50mg)
• Ginger root (100mg)
• White willow bark (300mg)
• Purified silver (30mcg)

This is all based off of a 30-mL dose.

From an herbal perspective, this is 'supposed' to be immunomodulating, not immunostimulating in its entirety. I've certainly taken vit c, zinc, and silver w/o getting these symptoms, so it's the herbs that made the difference, or the formula is more than the sum of its parts -- that is, one or more components increases the uptake or effectiveness of the others.

Just an FYI, I'll let you know how it goes (and if it goes).

-J

Update: this stuff is GREAT in careful, tiny doses just when I have pathogenic overgrowth. I just can't take it with any regularity or the above happens...