Dont know what to do next after lot of treatments - every opinion is welcome! CFS/Inflammation

MartinK

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Hi there,
someone already knows me here, someone not... and I am not happy with this report at all. But...lot of disappointment in recent months.
Fact is, summer is here and this year is hot temperature lot of worse for me - I feel the bed is burning with me!
My problems are the same from the beggining - bad CFS and lot of inflammation feelings.
5 Years was could handle it, last year after some flu I get worse and this year is critical...lot hours of day in bed, hard symptoms.

This all after lot of treatments. I know I had a Lyme and EBV when I was a child and lot of doctors still want me on Lyme protocols, but I did not respond of all treatments in past - no herxes, no nothing... tetracyclines, clarithromycines, rifampicinum, metronidazolum, some IV atbx...
And herbs - Cowden full support for 1 year, now Buhner for 0,5 year - core and Babs... no respond, no herxes... I can drink it in liters and nothing happens. Maximum dosages are no problem for me.
Essential oils, stevia, enzymes...all things for biofilms and persisters...
dr. KDM still want me on "persister protocol" but Im pretty scared of this, when another atbx and herbs for Lyme do nothing for me. And I dont want more chemistry in my weak body.

With this all Im still on big support from supplements - CoQ10, liposomal C, good B complex, E, D, K, Curcumin with piperin, lot of good oils...

Some SC Immunoglobulines from my doc for 2 years now...

10-pass ozone - nothing for me

Ketogenic diet for possible mast cell activation and inflammation - massive ketogenic flu and no more for me. Maybe few days I was little better, but no longer results. I dont know, if do ketogenic for next months or stop it... (now Im 3 months on it)
Maybe I try histamine diet... but its all shooting void of despair.

HBOT - firts year impressive results, this year nothing for me (absolutely not understand it!)
Anyone thinking something about it? One year most effective treatment (40 sessions) and now (another 40 sessions) nothing... all in hard chamber.

Sauna, epsom salt bath - this detox methods makes my inflammation harder, another detox methods makes nothing. Somethimes PEM from this...and last PEM was from massage.

Mold things - dont know, I live in good new house for 12 years now...no molds here

Possible gut problems - many diets trying, no allergens...this make nothing too.
I was on KDM normix/mesalazine/biokult gut protocol without results. But my digestion feels perfectly fine...no bloating or something...better than ever. Dont understand, why Kyna and PGE2 are increased a lot... (LPS related)

Heavy metals - lot of amalgams from my mouth are out! Now only 3 amalgams inside, I was on big surgery with wisdom teeths, infection under one is treated - all without effects.
Best heavy metals testing is? Maybe here is some way...

Maybe is there some more in this crazy 6,5 year! But its a fact, I'm much worse over it all. Crazy thing is, on paper - on results (lot of investigation) is lot of results better and better! Im crazy everytime when I see results and feel my body, my CFS and inflammation... all is bad like 500 meters walk for a day and 2 days in bed after this "massive performance".

Sometimes I thought it was psychic (from despair), but fact is, I am very positive most of the time, carrying over a lot of things. Its not like - thinking about my state and symptoms comming, no - symptoms comming and I'll realize it.
This is, why Im little bit uncertain with all that neuro-programming programs... (DNRS and more) :-/

What do I think about it? Something inside me makes a massive inflammation and this makes all that problems - like chronic-active immune system fighting with something that doesn't exist for some time.

Fact is, I dont now what to do next? :-/ stop buhner and all around, save some money and try some completely different? Im very unsure with the infections in me, but still not find right way...
I think if I get rid of inflammation, I'll be much healthier, but I don't know how to do it anymore...

Some ayurveda stuff?
Parasites?
Get out last amalgams and start chelation?
Try immune supressors?
Hyperthermia? (because fever makes me better - 2 times verified after flu
Analgetics? (this is most crazy idea...no solving problem, but when I woke up after wisdom teeths surgery narcosis last year, I felt 100% healthy for 1 day! I attribute it to analgesics)
Bee venom therapy?
Or?

Everything is welcome! every advice, every tip...this can't work anymore, something must happen ...

Most crazy thing is, blood test results are still better, but Im still worse. and I don't know how I can endure that inflammation in the summer :-/

Thanks a lot, Martin
 

percyval577

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I had ticks when I was a child, and there was an impact (a lasting one). I detoriated after EBV when I was 30.

Now I am on my way back. It has been so far a difficult improvement as thinking and vision got a bit worse, whereas pain and other nonsense slowly improved. My improvement/experiences:

1. lower manganese diet, because borrelia contain 2 times of magnitude (!) more Mn than other cells. The Mn should have altered iNOS, which I suppose to downregulate now. Especially no puls. If it works, be careful, I had horrible effects from mistakes at the beginning, green tea, a spoon of beans, for some reason an apple in combination with a lot of cheese (both low on Mn, maybe milk faciltated Mn uptake).

2. Vit B5, B7, B2, B1 (but never B6 and folate), after meals. Supporting the TCA cycle. B3??
I often do B5 and waiting a bit, than B2. Or Vit B7 and later B1.

3. changing configuration of metals. I think nerves do act where metals are, so one wouldn´t do it when/while getting worse.
a) eating chocolate (which contains a lot of metals), but not too much (say 9-37g or so at one time)
b) chelating metals by citrate acid (juice from a lemon in 1L water, drinking from it over some time, say a day or two hours, it depends). Citrate acid may also support the TCA cycle.
c) in addition: I take in extra selenium, 2 times a day 50µg, it´s often reported to help.

4. Putting a drop of 5% vinegar in the lemon water, as well as 75-150µg Vit B12. I think it would help epigentical changes. B12 also is a NO scavanger and inhibitor. Sometimes I took/take too much.

5. a) The combo of GABA and taurin I find helpful. I take every morning this combo (each 250mg, or 500mg) then doing a short chelation, then selenium, than chocolate. And every evening before bed in combination with Se once more.
b) I found also tyrosin helpful, but it stopped after having taken stupidly for one single time an antipsychotic.
c) A third help for my symptoms: I put (organic) tomatoegreen into hot water for 5-10 seconds, and from this water I put a little or big spoon in drinks. The alkaloids work against acetylcholine in the brain (nictotinic).

6. Eating only adequate protein and high fat (I eat vegetables and white bread with kerrygold butter). Two reasons I think:
a) the protein will be split up by requiring Mn. If low maybe not a good idea, in additon the required Mn will be released into the blood and should reach the iNOS enzyme to some extend as well.
b) some immunecells (shown for macrophages) have an M1 state where their energy production relies more on amino acids - I need to look it up for a third time - (here also B6 and folate may fit in), and an M2 state where it relies more on fatty acids.

2-4 and 6 I figured out only this year, but it is an acceleration, though it is not already possible to give a percentage, and a guess how much especially 2. and 3. have been a limiting factor during the last four years while doing my lower manganese diet.
____

I think the (currently not any further followed) NO and central sensitization theory is not bad an explanation at least for my mecfs. In particular I guess that in tendency unstructered nerve actions especially in the basal ganglia and the thalamus are responsible for PEM, which can be delayed, and might be (part of) a laughable exaggerated sickness feeling/acting. Maybe some of the involved mechanisms haven´t already adapt enough to our bigger brain.

Also part might be that primates have a pyramidal system which works not only for the head but for the whole body, whereas non-mammals haven´t any pyramidal system. In addition it´s also not so long ago that we lost the coat (3 million years, wasn´t it?) and began to sweat. This could also be an explanation for the fact that women are more prone to the illness: They sweat more, and - if I remember rightly - their basal ganglia and thalamus is bigger (they are more intelligent than men anyway). It might be only a slight misbalance in our illness, but with great an effect.

(Link to some of the theoretical attempt I tried.)​
 
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Hip

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Treatments which have a track record of helping ME/CFS and are used by various ME/CFS doctors, or which have been shown effective in studies, include:

B12 methylcobalamin injections (or transdermal B12 oils)
Methylation protocol
Low-dose naltrexone
Oxymatrine (immunomodulator for enterovirus ME/CFS)
Inosine (good add-on immunomodulator with oxymatrine)
Epivir (for enterovirus ME/CFS)
Valcyte (for HHV-6 or cytomegalovirus ME/CFS)
Valtrex or Famvir (for EBV ME/CFS)
GcMAF injections
Tenofovir (antiviral immunomodulator)
Nexavir (porcine liver extract)

Ampligen (hard to get and expensive)
IVIG (expensive)
Interferon beta (expensive and benefits usually do not last)

Piracetam (good supplement for brain fog)
Nimodipine (for brain fog and brain blood flow)
Methylphenidate (for brain fog and fatigue)
Dichloroacetate (for brain fog, fatigue and pain)
Modafinil (for brain fog)
Moclobemide (for fatigue)

Pyridostigmine (reduces PEM)
D-ribose (to speed up PEM recovery)
Dichloroacetate (improves fatigue and brain fog)
Probiotics and prebiotics (if there are gut issues)
Rifaximin (for IBS or gut dysbiosis)
 

Wishful

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I think you're spending too much effort on fad theories. Claims that health issue x is caused by y, so if you follow our 40-treatment program (Buy it now!!!), your health problems will go away! The problem is that none of those theories are based on knowledge of what the true cause of ME is. Maybe the treatment does reduce inflammation in some people who have some disease other than ME; and maybe not. You're setting yourself up for disappointment if you expect treatments for diseases other than ME to work for you. You shouldn't even expect that treatments that people here say have worked well for them to work for you, since ME is so individualistic.

When I encountered something that worked for my ME, the response tended to occur within a day or two, or even within hours. I haven't encountered anything that has taken weeks or months to start working, though I admit that I haven't experimented all that much with treatments that are supposed to be slow-acting.

My suggestion is to ignore the theories of what will help with ME. Instead, think of all chemicals as potential treatments, and try different things, and pay close attention to your symptoms. Keep track of which chemicals to avoid. Maybe you'll find something that reduces your symptoms, and maybe that will even work reliably rather than stop working after a short time as is all too common with ME. In 18 years, I've found only two that still work reliably, so it's not a quick, easy fix. Those two make a huge difference in my quality of life, so I consider it well worth the effort.

Possible treatments are not limited to chemicals. If you notice that you feel better when exposed to sunlight, or if you accidentally get zapped by electricity, that would be worth following up on. Massage or acupuncture might be physical, but probably work by altering chemical production or balance in the body, so I'd call those chemical too.

BTW, you said 'inflammation feelings' and that your blood tests are improving. So, are the tests showing actual inflammation, or are you just feelings symptoms that you associate with inflammation? It's possible to have flu-like symptoms without actually having immune system activation. It's the various chemicals produced by inflammation that cause the feelings, and those chemicals (such as kynurenines) can be produced without inflammation.

That reminds me of the other thing to experiment with: avoidance of chemicals, such as specific nutrients. Tryptophan and several B vitamins were things that increased my symptoms, so avoiding them at least allowed me to minimize my symptoms.

It's certainly possible that there are some treatments (or avoidances) that will help you. I don't think it's more likely that you'll find it in an expensive "This will solve your health problems!" offering than if you viewed the grocery store or wherever as a selection of potential treatments. When I've gone walking in the woods, I've occasionally chewed some leaves and berries on the slight chance that they'll have an effect on my ME symptoms. No discoveries yet, but no toxic reactions either.

I haven't been desperate enough yet to try chewing on bugs, which are probably just as likely to be a potential treatment than any health magazine advertisements. Maybe that beetle will work... :yuck:
 
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I ahve extreme inflammation, my citokines are extremely high. I discovered I had untreated colitis for 2 years.
I also have don’t know coming from where, I feel it in head. I am on LDN.
No sugar or gluten.. inflammatory foods are nono
I am now trying cbd oil and has been good so far.
I think you need doctor to dig in your cause and go by your lab results. Test is called Citokine profile and the normal one doctors run.
 

pattismith

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@MartinK
Some people here in PR were diagnosed with neck issues that could have trigger their ME/CFS, for example Chiari or Cranio-cervical instability (CCI). Internal jugular stenosis is also an alternative potential trigger for idiopathic intracranial hypertension, which is very similar to ME/CFS and Fibro.
Do you have some headache, or migraine, or neck pain? Did you have any neck injury in the past?

When I encountered something that worked for my ME, the response tended to occur within a day or two, or even within hours. I haven't encountered anything that has taken weeks or months to start working, though I admit that I haven't experimented all that much with treatments that are supposed to be slow-acting.
That's true for me too, even antibiotics that helped me at a time gave positive effects within less than three days!
 

MartinK

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Hey all, Im really happy from many words here! Thanks ;-)
Something is really hard to understand with my pood english skills but...hope I understand it good :)

@percyval577 low manganese diet sounds interesting, iNOS sounds in first time. Any interesting articles about it? TCA cycle is what? I will look at link! Thanks!
It I understand it right, you believe about problems with nerve pathways in our parts of brain?
How big progress in your state is? ;-) Hope you will be still better with your ideas and way!

@Hip Hey Hip, thanks a lot! Know a lot from this list after that years of finding good treatment. Some have been tried, some are unavailable... maybe I go back for LDN. Valtrex makes me little bit worse after few months of using. Lot of IVIG (1g/1kg) sounds really great, I did my best...but no chance to make this treatment on common immunodeficiency :-/
Results of CellTrend talk on Pyridostigmine is good for me, but I try hard to get it from my docs... really interesting pill to try!

@Wishful Oh, dear, really hard to understand some passages with my english :-/ If I understand it right, you recommend go trying lot of things and watching whats happen? Lot of experimenting whan will work or not?
Why tryptophan and some B? Any explanation? I do hydroxocobalamine (B12) a lot (MTHFR).
Oh, yes...inflammation, yes, here is feelings like fire burning in me. Good feeling when I touch on some cold things or make a cold shover.
IL-8, Kyna, PGE2...some links here on results:
https://www.dropbox.com/s/7j3wqyhfeajpvkt/IMG_2665.JPG?dl=0
https://www.dropbox.com/s/ztfbjw0niq9mm6b/IMG_2666.JPG?dl=0
When I feel more inflammation, my CFS is worse and PEMs more frequent.

@Seven (formerly lnester7) Hi, how cytokines? I have problem only with IL-8. How long you try CBD? And how many drops by day now? I tried 2 months test (8 drops 2x day was maximum) ...maybe little bit less muscle pain and better sleeping for me.

@pattismith Thanks for goodquestions! Because, I have really bad back - scheurmann. My back with legs are first what start to be painfull and exhausted when I do some activity. And inflammation here is very escalating afterwards! My neck is no good - pushed forward, a large bend of several vertebrae. But fact is, no migranes and headache for me. How many times people with good spine suffer more!

Thanks all for help ;-)
Martin
 

pattismith

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@pattismith Thanks for goodquestions! Because, I have really bad back - scheurmann. My back with legs are first what start to be painfull and exhausted when I do some activity. And inflammation here is very escalating afterwards! My neck is no good - pushed forward, a large bend of several vertebrae. But fact is, no migranes and headache for me. How many times people with good spine suffer more!

Thanks all for help ;-)
Martin
I had severe spine pain some years ago. Fortunately, it went away with antibiotics (lyme/Chlamydia protocol for 4 months). It's a pity antibiotics didn't work for you. I hope you will find something helpful.
In order to wait for this day, maybe you can achieve some little improvement with this physiotherapy:


This video comes from this site that you may find helpful for spine problems, especially neck:


https://treningogrehab.no/atlas-joint-instability-causes-consequences-solutions/
 

percyval577

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@MichaelK Yes, I think that nitric oxide (NO) from the enzyme iNOS has changed/is changing the action of nerves. And I think that subsequent a misdistribution of metals and some vitamins happens/ed. So, they would be on wrong places or too less at all.

For the iNOS and manganese I have found four articles - [though I have to say that manganese might be only one possibility through which nerves have gotten out of tune.] - e.g.:
Filipov et al 2005: Manganese potentiates in vitro proinflammatory cytokines and nitric oxide by microglia through ... (It had been open access, not anymore, sadly)

I will try to give all the literature which has been important for me (so to say) quite soon and in a reasonable way. It may take two weeks. (I will leave you a message on your thread).

For the TCA cycle: https://cs.wikipedia.org/wiki/Citrátový_cyklus
The czech wiki even mentions vit´s B´s, though not B7. There is a review on the B´s: Kennedy 2016: B Vitamins and the Brain: Mechanisms, Dose and Efficacy ... It covers also the TCA cycle in general, I think (almost all cells in our body do have the cycle).

I am comparable very well, though it´s still a catastrophy in terms of organisation. My brain fog I would say is a feeling (which has led up a lot), and an ability, here it changes, at least I can read things often quite concentrated now. All in all I might have improved to 80%? Difficult to say, I felt so bad. I sleep well right since I have begun my diet.

I also have a mild scheuermann. It has not gotten dramatical, and now sometimes my back piles high for some time, minutes, an hour. I think the bones havn´t changed too much in my case, but I think for sure it´s because of the ticks that I had when I was four years old.
There is an article from 1975 by Ader and Cohen which often might serve for psychosomatic medicine, not that what we want, really not. But on the end they say wisely, that their result is drawn from healthy animals. So, in healthy animals the immunesystem can be conditioned to stimuly which are captured by the psyche. Therefore, also in unhealthy animals ILL nerves should have an influence on other modules of the body, making some schuermann e.g. And I think this way is a good chance for an influence.
 
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@Seven (formerly lnester7) Hi, how cytokines? I have problem only with IL-8. How long you try CBD? And how many drops by day now? I tried 2 months test (8 drops 2x day was maximum) ...maybe little bit less muscle pain and better sleeping for me.
I would say a few weeks, I am at 80mg, I am mainly using it
For sleep. My drops have 25mg per dropper.
 

Wishful

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Why tryptophan and some B? Any explanation?
I think trypotophan is a problem for me because my ME is converting too much of it to the neurotoxic kynurenines, such as quinolinic acid. Your test results show an excess of KYNA, which is the good kynurenine (antiinflammatory I think). If I avoid dietary B3, my cells convert excess QUIN to niacin, reducing the effects of too much QUIN. I'm not sure why B2 caused problems, or why B12 did for at least a while.

Oh, yes...inflammation, yes, here is feelings like fire burning in me.
You can feel inflamed with actually having true inflammation. The feelings could be the result of an imbalance in some cell functions. I'm not sure whether your test results would be considered 'strong inflammation'. You should ask an expert whether you have real inflammation. Also, I assume that the tests were on blood serum, which don't show problems in the brain. The brain has it's own immune system (glial cells) that can be active without showing clear abnormalities in serum. Of course, it's much harder to convince a doctor to take a sample of brain fluid.

You said that you've tried many different treatments for reducing inflammation, and that none of them helped. To me, that is strong evidence that your problem isn't inflammation, so you should rethink your strategy for future treatments. I suggested trying a lot of simple, easy, cheap things, because at this point, there's no way to know what is likely to work for you. I just don't see any point in spending your resources on expensive or difficult treatments that are intended for health issues other than ME. There presently is no known treatment for ME. There also isn't a known basis for ME, so no way to recommend what to try. Thus you might as well try a spice blend or a fruit or vegetable that you haven't tried before, rather than an expensive treatment that is supposed to take six months before you see any effects.
 

MartinK

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@percyval577 Oooh, I know! Now I see it...I know "Krebs cycle" ...and now see its the same like TCA cycle. Thanks ;-) Now im in picture...
You find some "Low manganese diet" books or something? some clues and food lists? Looks like a good thing to try!

@Wishful Some about tryptophan write KDM in his first message from results for me:
https://www.dropbox.com/s/s12y4nj26kvrbny/IMG_2671.JPG?dl=0

Yes, I don't understand anything that happens in my body, after a long list of treatments and Im open to many new possible ways. Really interesting thing for me is fever and my reaction on it - fever makes me better. I think this indicates an immune response - like good response when this it's happening.

Yes, Im not sure with inflammation, thats right, but when Im in cold room Im feeling better, hot days makes me really sick - this points to something unequivocally.
 

percyval577

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No books. I discovered it by accident (and then thought to have borrelia). When I quickly forced low manganese after having had a manganese rich diet, the first day felt a bit strange, the second was already better and the fifth I slept wonderful. After three months I relapsed, but the very slow improvement took place, whereby thinking (whole front of the brain) and vision (whole back) were on an almost constant level worse than before.

With foods it´s roughly:
non-green vegetables are mostly low (some green ones as well)
non-mealy fruits are mostly low (e.g. billberries are somewhat mealy, and very huge on Mn, bananas middle)
milk products, eggs and meat are low
oils and fats are low (probabaly all, I think)

puls, especially beans, are high, at least I avoid all of them
nuts are mostly high, also whole grains and their products
chocolate can be very high but also contains oxalacid which captures the Mn. I learned to avoid dark chocolate.
milk may facilitate uptake, I had a pronounced effect from only three grapes in combination with yoghurt.
tea is high, also in my drinking experience
innards tend to be high, liver e.g.

For myself I made this scheme, and stick/ed to the first two, .....Mn/100g food:
40-150 µg
150-800 µg
800-3000 µg

When intake is low, the resorption gets more effective. Fat seems to slow down resorption.
Iron and manganese compete for the same transporter (I have forgotten if calcium as well)
In my experience the resorption from bread is worse than from potatoes.
I still avoid bananas, although they are in the range of 150-800µg.
A lot of tasks that work by Mn work also by magnesium. So it could be wise to look for some Mg.

For some time I sticked to very low Mn (40-150µg intake), because I could feel the Mn (and hadn´t figured out additional influences). I am rather a very healthy person, no serious sideeffects appeared so far (I obviously had thin blood then).

There may be some books that lists contents in nutritions. Also the internet provided me (once they made a mistake, haha). Good luck!
 

percyval577

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Yes, green tea :-/, I too loved it so much. I tried it this year again, but still not a good idea.

Keto yes, I knew, the diet can easily be a low manganese diet, I will add it to the linked list.
I improved by accident before I choose to quit meat (replacing it by puls, detoriating three months later):
I was mostly low on Mn (by accident), and then I quit by accident any tea (due to another work) and drank coffee, and within say two years only one uncomfortable symptom stayed.

Recently I had tooth pain, and took a COX inhibitor (ibuprofen) with a very good effect. I know that (some) COX-2 inhibitors are somewhat helpful for me due to inhibiting iNOS, though I hadn´t looked at the relationship iNOS - COX-2 much further. (It´s of course no good idea to take strong COX inhibitors for long time, also they might get out of work.)

Really good web site.
 
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MartinK

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Hi all!
Some update here!

Next week I starts BVT - Bee Venom Therapy (for still possible active Lyme and inflammation) - my CD57 still goes low.

Heavy metals and minerals hair testing - LEAD problem...I would like to start some gentle chelatation, but 3 amalgams still in my mouth. (Mercury is not problem in my hair tests)
here is all hair testing: https://www.dropbox.com/s/g69utbmpwsn52n4/1000132573_Cz.pdf?dl=0
For LEAD is best chelator EDTA, right?

Aspen Vista Multi Neck Brace arrived from USA! This is for testing possible CCI, EDS, Chiari... my back are bad - moerbus scheurmann. Now second day with this brace - amazing ergonomy, cold pillow and air pressure settings - amazing product and cervical spine support. I do short perieods now with this brace.

And looking for some good mycotoxines testing. This can also decrease CD57 from some studies.
 
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Ketogenic diet for possible mast cell activation and inflammation - massive ketogenic flu and no more for me. Maybe few days I was little better, but no longer results. I dont know, if do ketogenic for next months or stop it... (now Im 3 months on it)
If our ME bodies are having trouble burning glucose, AND fats, then it seems like the ketogenic diet is perhaps not a good approach for us.
 
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This video comes from this site that you may find helpful for spine problems, especially neck:
Wow: this is a pretty mind blowing PHD in neck anatomy.

I know mine is NOT ok. I hope I can find someone to help me: figure this out.

It seems like one is constantly trying to hold some physical position that the body then defies moments later. Its exhausting. How can our bodies be this DIFFICULT?

But this seems to explain what I"m doing with this Adam's apple- that I did not have, from what I recall.

The last four years of sitting at a computer. I can only imagine the GENERATIONS of damage we are generated by the tech work so many now do. (I typed).