A crashing story

[heapsreal]

Yes, im having a crash.

Ive been off my usual self since december i guess. A few sinus infections etc. But the last few years have been quite well, different work role has been a big help plus no shift work and ive been able to get into my hobby of weight training and train hard.

Not sure if maybe my immune system is just gone to sleep on me or not but im guessing it has, due to the sinus infections being quite persistent. Blood work shows moderate neutropenia but that isnt new.

But i think the major issue is that famvir is in a very limited supply here in Australia at the moment. So limited i cant get any. But i am on valtrex but past experience with valtrex only was not effective for me and currently doesnt seem to be helpful. So i have my pharmacist keyed up to let me know when it comes in.

I plan to get a lymphocyte subset test soonish and chat to my dr about it as he isnt my original cfs dr but instead a skeptical gp who has continued my prescriptions on from my previous dr. That will be interesting as i have a feeling my T lymphocytes will be all over the place. But the testing will help my dr in being confident that famvir is right for me.

Episodes or incidents like this make me realise how reliant on antivirals I am and how effective they are for me. Reinforces this crap isnt just in my head, but i think these thoughts go through every cfsers mind, every so often.

Anyway i thought id post an update, a whinge and a whine.

Cheers🍻

 

[Wolfcub]

Sorry about your crash @heapsreal No fun at all. I speak from my own crash-zone here. One that just won't go away this time.

So you have to continually take antivirals, just to keep a decent baseline? But they are not actually shifting the ME/CFS?

Last night I almost prayed that this stuff WAS all in my head. Sorted with a course of talk-therapy and mindful thinking. Wouldn't that be nice?

 

[xks201]

Are you sure your hormones are working? What tests have u taken recently to reflect any T you’re on is real etc?

 

[heapsreal]

Last night I almost prayed that this stuff WAS all in my head. Sorted with a course of talk-therapy and mindful thinking. Wouldn't that be nice?

Yes i understand . Our mind plays tricks on us like this. Hope things start improving soon for you👍

 

[heapsreal]

So you have to continually take antivirals, just to keep a decent baseline? But they are not actually shifting the ME/CFS?

The antivirals did improve things, so i guess they shifted my cfs but i have to stay on famvir to maintain my level of function. But they arent curative as in a treatment course is completed and your improvement remains.

Although if i recall correctly, Dr Lerner mentions several antiviral responders. Some will improve after a year or 2 on antivirals as immune system strengthens enough while the viral load is down and can maintain this. Another group need to remain on antivirals for 8-10 years and eventually the virus burns itself out, whatever that exactly means but i get the idea. Then there is a group that appears to be me where we just have to remain on antivirals forever, unless there is some way to restore nk function to normal i guess.

So im basically in waiting for supplies of famvir to start arriving.

 

[Wolfcub]

I get the idea. Thank you for explaining that @heapsreal I hope your meds arrive very soon Waiting for something which we know is going to make us feel a little better is frustrating isn't it?

 

[Davsey27]

The antivirals did improve things, so i guess they shifted my cfs but i have to stay on famvir to maintain my level of function. But they arent curative as in a treatment course is completed and your improvement remains.

Although if i recall correctly, Dr Lerner mentions several antiviral responders. Some will improve after a year or 2 on antivirals as immune system strengthens enough while the viral load is down and can maintain this. Another group need to remain on antivirals for 8-10 years and eventually the virus burns itself out, whatever that exactly means but i get the idea. Then there is a group that appears to be me where we just have to remain on antivirals forever, unless there is some way to restore nk function to normal i guess.

So im basically in waiting for supplies of famvir to start arriving.

Curious heap,

Which viruses do you think is causing this?

 

[heapsreal]

Curious heap,

Which viruses do you think is causing this?

Cfs onset was cmv then chickenpox, then ebv in 2002. My cfs dr with an educated guess said cmv and ebv is reactivating going by lymphocyte subset testing. Cant get viral titre levels tested here. But since 2015 have had several shingles outbreaks on my head. So some combination of them but mostly suspect cmv as i have been unresponsive to valtrex and there is a history of people with cmv and hhv6 improving with famvir.

 

[Hd-x]

ive been able to get into my hobby of weight training and train hard.

Doing some sports is good for the immune system, but as harder you go -obvisously, it could happens the opposite. I started slowly last year with weight lifting and everything went fine. Well, since I added some CNS demanding exercises, few immune problems (bladder infections) were coming back. The strange thing is that I have many immune system problems fixed (= my blood work looks a lot better then in past)
So I am asking sometimes myself how could it be possible that infections can come back under some cirumstandings and recognized it as a warning not to train with near maximal loads that place strain on the nervous system.

However so, in my case also viruses are a problem (HSV1 & VZV),
combining Valtrex + Inosine + High Dose L-Lysine helped, have you tried such combinations?
Valtrex alone also didnt work for me, but curiously together with L-Lysin/Inosine.
I don´t know the reason.

Wish you the best and that yours crash didnt last long.

 

[Davsey27]

Doing some sports is good for the immune system, but as harder you go -obvisously, it could happens the opposite. I started slowly last year with weight lifting and everything went fine. Well, since I added some CNS demanding exercises, few immune problems (bladder infections) were coming back. The strange thing is that I have many immune system problems fixed (= my blood work looks a lot better then in past)
So I am asking sometimes myself how could it be possible that infections can come back under some cirumstandings and recognized it as a warning not to train with near maximal loads that place strain on the nervous system.

However so, in my case also viruses are a problem (HSV1 & VZV),
combining Valtrex + Inosine + High Dose L-Lysine helped, have you tried such combinations?
Valtrex alone also didnt work for me, but curiously together with L-Lysin/Inosine.
I don´t know the reason.

Wish you the best and that yours crash didnt last long.

Interesting seems that there is definitely a viral component to this conditon.I have had VZV,CMV,and EBV markers as well.

Seems like combining antivirals inosine and lysine with a pharmaceutical is helping you.Glad to hear that.I would like to experiment with antivirals as well.I know they can be expensive for those of us who don't work.

 

[Davsey27]

Cfs onset was cmv then chickenpox, then ebv in 2002. My cfs dr with an educated guess said cmv and :2ebv is reactivating going by lymphocyte subset testing. Cant get viral titre levels tested here. But since 2015 have had several shingles outbreaks on my head. So some combination of them but mostly suspect cmv as i have been unresponsive to valtrex and there is a history of people with cmv and hhv6 improving with famvir.

Interesting heaps,

I have also had rashes on my head once or twice a year that come for a few days and disappear.I have had markers to CMV 10:1 Ebv 14:1 and varicella 200:1

These are past infections according to conventional docs and not current markers.I was told it just means you were exposed to chicken pox as a child and take care of your immune system as you get older.

Glad you benefited from Lerners idea heap.

I will see if perhaps I can convince my parents if they
can order something online or try to raise money for antivirals


Do you think famvir can tackle all of these infections?

 

[Stretched]

Indeed, your CFS seems To be viral related, if you get improvements by treating with antivirals. Or, do you wonder if it is that the antivirals are coincidentally conducive to making you feel better, e.g. irrespective of your viral condition?

Amazing that you’re able to work out! That was the first thing that went for me; never have been able to return to anything but light exercise and walking. Otherwise, P.E.M. Do you feel you are continuing to decline in total or do you feel stable and do you still get PEM, e.g. regularly after exercise?

BTW, where have all the regulars of old gone, say >5 years - still reading in the shadows but not posting?

 

[Hd-x]

Interesting seems that there is definitely a viral component to this conditon.I have had VZV,CMV,and EBV markers as well.
Seems like combining antivirals inosine and lysine with a pharmaceutical is helping you.Glad to hear that.I would like to experiment with antivirals as well.I know they can be expensive for those of us who don't work.

Besides the viral problems this Inosine works great (for me) as PEM buster together with ATP Supps (HMB, MSP, Creatinmalat, EAAs, ß-Alanin). Since I am on antivirals + ATP supps + got the immunological (chronic) TH2 Shift under controll => my recovery rate significantly changed and the PEM a lot better.

 

[heapsreal]

I will see if perhaps I can convince my parents if they
can order something online or try to raise money for antivirals


Do you think famvir can tackle all of these infections?

Well famvir seems to have helped me with these 3 viruses.
If you were going to try antivirals you need to realise you may be on them along time, so you have to weigh up the cost. Need atleast 3 months to notice improvements the first time you use them. For some reason people who have been on them before respind sooner, maybe a lower viral liad from previous antiviral treatments.
The whole certain viral titres are an old infection i dont think is 100%. Igm titres show a new infection, igg show an old infection but nothing specific to an old infection reactivating but Dr Lerner would say igg titres over a certain level was a sign an old infection was reactivating. Where im from i cant get a specific viral titre measurement. But elevated total lymohocytes and certain T cells can indicate your immune system is actively fighting something. Which is what i went off. Plus low nk function is a common finding in chronic viral infections, so its an educated guess.

Good luck.

 

[heapsreal]

Indeed, your CFS seems To be viral related, if you get improvements by treating with antivirals. Or, do you wonder if it is that the antivirals are coincidentally conducive to making you feel better, e.g. irrespective of your viral condition?

Amazing that you’re able to work out! That was the first thing that went for me; never have been able to return to anything but light exercise and walking. Otherwise, P.E.M. Do you feel you are continuing to decline in total or do you feel stable and do you still get PEM, e.g. regularly after exercise?

BTW, where have all the regulars of old gone, say >5 years - still reading in the shadows but not posting?

Yes definitely viral stuff at the core. The 3 herpes viruses kickstarted my cfs crap and alot of my testing of generalized immune markers come back saying i jave a current viral infection, usually because on fbc lymphocytes will be high and or neutrophils are low.

Well the working out was probably a combination of things like change in working conditions, antivirals but also another spike in improvement doing TRT/testosterone replacement therapy. My testosterone level had been low for awhile but in Australia drs are too scared to treat low testosterone but instead but guys on antidepressants. But if your a girl that wants to be a guy then its not an issue. The health system is really that crazy they wont treat guys with obvious hormones deficiencies and this has major health implications itself as all risks of chronic illness are increased in men with low testosterone including immune function. Where theres a will theres a way and guys can find TRT.

Id still get some pem from exercise but only for a day. I was only weight training twice a week but was training hard and some sessions for 2 hrs. I would also cycle my training intensity for several months so i wasnt going flat out all the time. And made sure i got a good supply of protein. I probably got back to an 8 or 9.

It didnt help that i had a run of sinus infections and then caught a cold off someone at work, the icing on the cake was the supply of famvir dried up.

The regulars of old have gone, hopefully cured but more than likely sick of thinking about cfs i guess and just trudge through the fog. A couple of months back i was looking through some of the original posts back over 15 years ago as i was one of the first group of people on PR, so many old names i remembered but over time have left. Plus several big feuds didnt help with the xmrv storm, the rituximab war and the site being over run by a dr who promised to cure everyone but change the forum from a patient support group where people shared experiences to some type of scientific hardcore research facility and everything posted was scientifically censored. Always disagreements when something new comes along as not everyone agrees or i think mostly people move on. I was basically poking my head in here once in awhile. Strange but when one starts to feel worse we tend to go looking for answers more again etc

Cheers

 

[heapsreal]

Besides the viral problems this Inosine works great (for me) as PEM buster together with ATP Supps (HMB, MSP, Creatinmalat, EAAs, ß-Alanin). Since I am on antivirals + ATP supps + got the immunological (chronic) TH2 Shift under controll => my recovery rate significantly changed and the PEM a lot better.

I think just like how many chronic health conditions are a catabolic state, so is cfs/me. So i think of one can push the body towards a more anabolic state with hmb, creatine, hrt, adequate protein 1-2grams per kg of body weight etc it can help improve exercise tolerance and reduce pem.

But also try to find and treat the underlying cause or whats close to the underlying cause be it infections or different immune deficiencies.

 

[Marylib]

I am getting up the nerve to do my version of weight training, which is all lying down, then doing nothing for a long time. The best thing I have found is exercise bands for muscle tone and this great Suzanne Sommers (I kid you not) ab cruncher and butt lifter thingie, which I use for arm muscles and back muscles. But I am really really careful - I gave up on most of it - anything that makes my heart race and go "puff puff" with my breathing is a definite no-go. @heapsreal - hope you feel better soon. But be careful with testosterone stuff, okay? It can really mess with a guy's mood. I have heard of some men getting an Rx to reduce oestrogen somehow.

 

[AndyPandy]

Hi there @heapsreal
Good to see you back here. I’m not on here very often either. Just pop in from time to time.
Hope you can get hold of the Famvir again soon.
I might have told you this before but I met someone with ME/CFS who told fibs to a new GP about having genital herpes and needing to stay on anti virals. The anti virals are keeping that person’s ME/CFS manageable and they are very functional.
I wish mainstream GPs were more open to prescribing anti virals for us.
Best wishes Andy

 

[Hd-x]

But also try to find and treat the underlying cause or whats close to the underlying cause be it infections or different immune deficiencies.

I came up to the conclusion that some CFS related problems (depending on the case) have something to do (reactivated) viruses. my HSV titer where high und there is evidence that herpesviruses can impair mitochondria (HSV 1 mitochondria study, Pridgen FM Trial, ME/CFS mitochondria HH6 study).
The chronic immune system TH2 activation might be partly a different thing, I cant say if it is CFS or MCAS related, the only thing I know that the Supps I use against chronic inflammation/Th2 shift seems to work. (IL4 + IL8 went into normal ref. range, also the problem with the toxic granula in my blood is gone/history)

Still have problems to get antivirals prescribed for long. Unfortunalty, it seems to be a "common" problem that ppl. with ME/CFS have problems to find a Dr. that prescribes antivirals for long. In my country 96 Valtrex pills cost $150 and Famvir 21pills cost $500. (Famvir would not be covered by my insurance)

I was only weight training twice a week but was training hard and some sessions for 2 hrs

Wow, 2hrs is a lot and seems you like HighVolume training,
in my healthy days I always trained LowVolume (HD / HIT) and did the same now with CFS. It seems to work as so long I avoid muscular failure and any intensity technics (superslow, static holds, negative reps and so on).

Interestingly our cases have some parallels
we both have Herpes virus problems and take benefits from antivirals, we both take benefits from TRT in supraphysological ranges.
Some folks say against chronic viral infections high dose Vitamin C infusions should help, also Thymic Protein A (Pro Boost), Monolaurin and so on.
There are some others immune boosting Supps availible besides Pro Boost like MGN3 that should increase T-cells, NK cell activity and so on (still havent tried such supps because off MCAS)
Have you ever tried such immune boosters and did it help anything?

 

[Davsey27]

I think just like how many chronic health conditions are a catabolic state, so is cfs/me. So i think of one can push the body towards a more anabolic state with hmb, creatine, hrt, adequate protein 1-2grams per kg of body weight etc it can help improve exercise tolerance and reduce pem.

But also try to find and treat the underlying cause or whats close to the underlying cause be it infections or different immune deficiencies.

Mr.heaps,

I was curious what helped your cfs more Trt or antivirals?