Not Boom and Bust - an Epiphany.

[justy]

I had a brief and fleeting Epiphany the other day.

I am not stuck in 'Boom and Bust' or a cyclical waxing and waning of symptoms because I am overdoing it and then resting, then over doing then resting, but that something else entirely is going on (I do however get severe PEM from minimal extra activity beyond baseline)

The past 6 years, since my severe relapse I have been following the advice to pace to try and even out the terrible, cyclical ups and downs of this illness. I do need to pace to avoid PEM but I now feel strongly that the cycles I experience are coming from my immune system and extra illnesses I am getting on top.

I am one of those who catches everything going - although not so much bad colds. The problem is that my body doesn't mount a good immune response so they linger for weeks (usually about 2). Then I may have a few good days or even at the most two weeks before another nasty hits and takes me down again for two to 4 weeks. occasionally these illnesses run into each other causing months of crashing at a time.

This suddenly became apparent this week after a run of ill health on top of the usual M.E symptoms.

In June I had a severe sore throat which over a week turned into a chest infection, which became severe and upset my asthma and then I had weeks of nasty drugs that made me feel worse. As soon as I started to feel better - around mid July - I got a horrendous case of heartburn and stomach pain (so did my husband) his lasted a few days while mine carried on well into August (and I felt extra exhausted). Just as this was clearing at the end of August my husband became extremely ill, very quickly with stomach pain, chills and a high temperature. I also that same day started to feel sick with stomach pains, but was no where near as sick as he was.

Within 24 hours he said he was 90% better, the next day fully recovered. For me it took two weeks to come on and about a week to leave me - I never had a temperature at all.

As soon as this was coming to an end around the beginning of September my youngest daughter started coughing and complaining of a blocked nose. Oh no, I thought- that's it for me - I may even end up back on steroids for my lungs if I catch her cough and cold. I started to feel bunged up - my asthma declined. She was ill for a week and then better altogether. I am still very slowly 'coming down with something'.

In-between all these events I had a few days here and there of feeling a bit better. Right now I feel the best I have in months (still not great), but as the cold virus takes hold I expect to go down hill again over the next few days to week.

It seems that my ups and downs, boom and bust is entirely immune mediated. I am staring monthly IV Gamma Globulin - 10g from November for three months so we will see if that makes much of a difference to my over all health. I suspect (as obviously my Doctor does) that if I can STOP catching things - or at least be properly sick and recover quickly- and treat my intracellular infections then I may have a chance at some improvements!

I wonder how many of us this scenario is true for?

 

[Sasha]

Me too - I keep myself well below PEM levels by pacing but even so, I can never establish a steady baseline for more than a couple of weeks or so.

 

[AndyPandy]

@justy

Sorry to hear of your struggles.

I can relate to this. I catch everything going and it takes me many weeks to months to recover. I have patches of feeling a little better, only to be knocked down again with another bug. I seem to be declining over time. I think I have just caught yet another bug and have an enormous mouth ulcer as well.

I pace pretty carefully, but not perfectly. I think my immune system is struggling and this is the reason for the ups and downs, rather than overdoing it when feeling a bit better.

Best wishes

 

[justy]

I think my immune system is struggling and this is the reason for the ups and downs, rather than overdoing it when feeling a bit better.

Yes this is it for me exactly!

@Sasha - do you remember if Jonathon Edwards has this type of ME in his list of ME's? @AndyPandy and I also both have symptoms similar to Lupus AND have developed low level Anti Nuclear Antibodies.

 

[justy]

Dr Nigel Speight mentions the benefits for some PWME of doing IVIG in his pre dinner speech at the IiME conference this year - I will try and copy up the quote later. He mentioned some studies...

 

[Sasha]

Yes this is it for me exactly!

@Sasha - do you remember if Jonathon Edwards has this type of ME in his list of ME's? @AndyPandy and I also both have symptoms similar to Lupus AND have developed low level Anti Nuclear Antibodies.

I don't remember, I'm afraid - here's a link to the first post on his thread in which he describes them:

http://forums.phoenixrising.me/index.php?threads/do-mes-cause-cfs.31930/

 

[Sidereal]

@justy, I was like this too in the first ten years or so of my illness. I seemed to catch every infection and was always sick with something or just feeling recovered for a few days, only to be slammed with the next infection. Compared to others around me, these infections would always develop into something severe and long-lasting. I would be flattened for at least two weeks with any sore throat. Then, mysteriously, my illness changed about 7-8 years ago. I catch colds at a normal rate (~2x a year or so) but I never develop a fever, ever, so any infection I do get lingers for a long time and affects me more severely than family members.

I also have the type of ME with antinuclear antibodies as described by Prof. Edwards.

 

[taniaaust1]

I wonder if you have a certain immune deficiency issue (another medical issue on top of the ME/CFS).. sorry bad brain so I cant remember what it is called but remember reading about it on here some time as something else had it.

Im fortunate in that Im not like that, excertion knocks my immune system down but as long as I can avoid excertion I dont have issues like this. Its hard cause doing so very little knocks my immune system down eg last week I talked to someone on phone for 45mins, that was enough to give a red sore throat and swollen glands for 2 days. Sometimes I get a cough after and it does give me asthma as a ME/CFS after affect.

I think you may have something else going on as well.

 

[AndyPandy]

I don't remember, I'm afraid - here's a link to the first post on his thread in which he describes them:

http://forums.phoenixrising.me/index.php?threads/do-mes-cause-cfs.31930/

Maybe ME 1? Both @justy and I have positive ANA speckled pattern. Mine has just been retested and has gone from 1:320 in 2012 to 1:640 last month.

 

[PeterPositive]

I can relate to those problems as well. I very rarely get an acute flu, cold, stomach flu etc... even when people around me are very sick. Which is good to a certain extent, but on the other hand I get these milder versions that last for weeks if not months. It's as if the immune system can fight strong infections but it is horribly slow to definitely get rid of them, so I end up with almost chronic flu-like symptoms.

I have never investigated this aspect very much... so it's not clear to me how this might work. I suppose that the part of the immune system responsible to react to the infection quickly is still working, while the "garbage collectors" are all on vacation?

 

[ukxmrv]

You have learned something valuable there Justy.
Pacing for me doesn't make any difference when it is the change of season flu or the summer glandular fever type attacks that I get. The viral attacks seem to have a life and a rhythm of their own. No amount of pacing will stop me from catching the flu from my partner and from the flu turning into a sinus infection or chest infection. That can go on from a month off and on and then keep coming back for a season.
It's not the same as the PWM flu symptoms which last as long as the PEM.
Something that "pacing" missed is that some people actually feel better for a few days as they develop a cold or flu. They can do more for a few days and the pacing crowd would blame the flu/cold on the over-exertion of the previous days rather than a precursor phenomenon.

 

[alex3619]

I see this issue as more about convergence of waves. Waves have peaks and troughs. Sometimes they converge and merge, and you get big peaks and troughs, and sometimes they cancel each other out and you can feel good very briefly.

Why am I using this analogy? I have been aware since 1993 that symptoms in ME can closely follow food patterns. Diet can have a huge impact. However its not any food, and not covered by most theories. There is a class of hormones called eicosanoids. They are synthesized by fats in the diet. Many factors regulating their synthesis are abnormal in ME patients. As we eat different combinations and amounts, we produce different hormone responses. These can induce crashes. I have had more than a few that way in a very predictable fashion.

Further, we get infections all the time. Maybe every day, maybe several times a day. Our immune system beats most of them down and we never notice. Its possible that our defective immune responses mean they get a little further before we beat them down. Its also possible we are just more sensitive, and these transient infections stimulate our immune systems too much.... this can easily tie in with the microglia model.

The point is these may cause ups and downs too. Its not just exercise, or even stress, that can induce crashes. Its just that exercise is often so much easier to see as an issue. So when a bunch of factors come together, you get a crash. When a bunch of factors cancel each other out, you get a good day. Yet nobody really knows what all these factors are. So, wham, it comes out of the blue ... how did that happen?

I have had times when I was much more resistant to exercise induced PEM. It took a lot more. I have had times when almost no effort produced PEM. Lots of factors modify the response. Exercise is the trigger in these cases, not the whole mechanism.

 

[Snowdrop]

HI @justy

I am sorry to here that you have been experiencing so much added misery at the hand of opportunistic infections on top of ME.
It's good you figured out that you're not just affected by overexertion. By starting this thread there have already been some interesting observations.

Like Peter Positive I don't really seem to get very sick. I'm not sure that I even get a mild version of anything although having said that I think I just put any setback down to overexertion. I just missed an opportunity to take notice as my son brought home a cold that my husband then caught. Alex certainly made some interesting points to consider. I'll have to pay more attention.

From a quick search here's some info I found on Eicosanoids: https://www.rpi.edu/dept/bcbp/molbiochem/MBWeb/mb2/part1/prostag.htm

take care,
SD

 

[justy]

HI @justy

I am sorry to here that you have been experiencing so much added misery at the hand of opportunistic infections on top of ME.
It's good you figured out that you're not just affected by overexertion. By starting this thread there have already been some interesting observations.

Like Peter Positive I don't really seem to get very sick. I'm not sure that I even get a mild version of anything although having said that I think I just put any setback down to overexertion. I just missed an opportunity to take notice as my son brought home a cold that my husband then caught. Alex certainly made some interesting points to consider. I'll have to pay more attention.

From a quick search here's some info I found on Eicosanoids: https://www.rpi.edu/dept/bcbp/molbiochem/MBWeb/mb2/part1/prostag.htm

take care,
SD

Thanks for the link...I didn't really understand much of it, but I did notice they said that prostaglandin is an Eicosanoid and my PEG2 was found to be very increased. Cant connect the dots here though as im too brain fogged.

 

[alex3619]

@justy, would that be PGE2? The PG is prostaglandin. E is a type. 2 refers to a molecular parthway, in this case synthesized from omega-6 fatty acids. This kind is pushed by fat from meat, and especially organ meats and egg yolks. Fish oil can help. This entirely fits with the model I was talking about, but that should not be taken as proving the model. Maybe its due to something else. What is interesting is this can be responsive to both steroids and NSAIDs, though I think fish oil is safer. Restriction of organ meats is also a good idea.

For those who have ever read many of my older posts you will see me writing a lot about arachidonic acid. Its whats present in meat fats, and is the series 2 equivalent of fish oil (which is series 3). Its usually pro-inflammatory, though this is deceptive as some important anti-inflammatory hormones are also made from it.

PGE2 is a vasodilator I think. It might affect OI.

 

[Snowdrop]

Thanks for the link...I didn't really understand much of it, but I did notice they said that prostaglandin is an Eicosanoid and my PEG2 was found to be very increased. Cant connect the dots here though as im too brain fogged.

Yeah I didn't understand much either but from having read some of your other posts in the past I recognised the Prostoglandin bit as something that might be relevant.

Edit: would be glad to here more about how these biochemicals affect PWME.

 

[justy]

@justy, would that be PGE2? The PG is prostaglandin. E is a type. 2 refers to a molecular parthway, in this case synthesized from omega-6 fatty acids. This kind is pushed by fat from meat, and especially organ meats and egg yolks. Fish oil can help. This entirely fits with the model I was talking about, but that should not be taken as proving the model. Maybe its due to something else. What is interesting is this can be responsive to both steroids and NSAIDs, though I think fish oil is safer. Restriction of organ meats is also a good idea.

For those who have ever read many of my older posts you will see me writing a lot about arachidonic acid. Its whats present in meat fats, and is the series 2 equivalent of fish oil (which is series 3). Its usually pro-inflammatory, though this is deceptive as some important anti-inflammatory hormones are also made from it.

PGE2 is a vasodilator I think. It might affect OI.

Hi Alex, that's interesting as I haven't eaten meat in 25 years and don't eat eggs as I am allergic. Interesting stuff though.

 

[Valentijn]

Hi Alex, that's interesting as I haven't eaten meat in 25 years and don't eat eggs as I am allergic. Interesting stuff though.

I eat meat or plant protein twice per day, but not in large amounts. My PGE2 is also quite high. I also take 3 grams of fish oil per day.

 

[alex3619]

Hi Alex, that's interesting as I haven't eaten meat in 25 years and don't eat eggs as I am allergic. Interesting stuff though.

Vegetarian diets are often high in short chain omega-6s, and so often lead to lots of arachidonic acid anyway. This is under better control though. Its the organ meats that are likely to induce sudden surges of hormone synthesis.

 

[alex3619]

I eat meat or plant protein twice per day, but not in large amounts. My PGE2 is also quite high. I also take 3 grams of fish oil per day.

I interpret high PGE2 as a sign that fish oil is probably a good idea .. .quality fish oil of course.

I have written many times about the biochemical factors here. Even in a patient with low arachidonic acid there is no guarantee that they don't make too many series 2 eicosanoids. Worse, due to glutathione issues we can both make too many and too few series 2 eicosanoids. This is an area begging for more research, but sadly I don't see that happening.

Too many and too few? How can that be? I think we push certain eicosanoids and not others, but this is speculative. What is not speculative is that if some organ (like the liver) is pushed to make too many, then there may be less substrate for other tissues. Either too few or too much can cause problems.