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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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A crashing story

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
@heapsreal Great post. If I were able to do your routine I would consider myself cured! it makes me question my own CFS, sic is it really something else? Dang, it’s been progressively worse over the years. Anti- and retro- virals only made me sicker... .

I go back ~8 years here but 30+ with the illness. ‘Getting old and tired:pem:. I only pop in here occasionally and don’t recognize very many people. I think the illness may be at a standstill with new developments. Keep on truckin’.
 
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heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Wow, 2hrs is a lot and seems you like HighVolume training,

Sounds like high volume but i keep reps between 1-5, lots of rest between sets, especially going heavy. I think at the right time, as in functioning well with cfs, we can train very heavy but use singles in training helps us avoid taxing our aerobic system too much. It seems the aerobic metabolism is the issue in many of us. So i try to stay in that anaerobic range and singles seem to work best for me. But there is a certain amount of pem and fatigue that builds up which is why i adjust my training intensity over several weeks to months.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
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?

Yes, tried a variety of things and the only things ive seen effect nk function or numbets was immunovir/isoprinosine or cycloferon. Im not sure what it is but its getting harder to find things online. Govt conspiracy or what?? Govt here want to get their10% tax on everything , even some cheapo phone covers from china for $1, they want their 10 cents worth. Hopefully i have found a good source of isoprinosine i will order soon and hopefully famvir stock entre the country. Its actually much cheaper for me to buy it with a script here then online. Its the reverse of what it was 10yrs ago when it was cheaper online but there were more option on line then.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Mr.heaps,

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

Im on trt now and no famvir and the medical word is shithouse lol. So id say i need the antivirals first and get the viral load down to then benefit from TRT.

The other thing high on my agenda thats helpful are sleep meds. Without sleep im just a mess. So i really need the 3 to feel well.
 

Davsey27

Senior Member
Messages
514
Im on trt now and no famvir and the medical word is shithouse lol. So id say i need the antivirals first and get the viral load down to then benefit from TRT.

The other thing high on my agenda thats helpful are sleep meds. Without sleep im just a mess. So i really need the 3 to feel well.

Being in Australia heap have you ever experimented with sunlight exposure to fight herpes family viruses
or did you find antivirals more powerful then being outdoors in natural light?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
@heapsreal Great post. If I were able to do your routine I would consider myself cured! it makes me question my own CFS, sic is it really something else? Dang, it’s been progressively worse over the years. Anti- and retro- virals only made me sicker... .

I go back ~8 years here but 30+ with the illness. ‘Getting old and tired:pem:. I only pop in here occasionally and don’t recognize very many people. I think the illness may be at a standstill with new developments. Keep on truckin’.

I guess you could almost say cured but take the meds away and im back up shit creek lol.

Theres always a few things that knock me back and remind me that im not out of the woods. When i get sinus infections they knock me back down as does my random insomnia nights of nil sleep or the shingles thing on my head which im not sure if its rhe virus reactivating or neuralgia or maybe both. Those sorts of things can knock me down to cfs level pretty quick and if on the right treatment i have been able to bounce back from them.

Ive spoken to a few people who have improved alot, i guess many would say recovered, but theres this something always in the back of your head that you have to be careful or you have a day of full on cfs brain fog and surfing the lounge chair just to remind you to watch out. Its weird but have to enjoy the good times when there around because its never far away that your bum print will be almost permanently on the lounge again 🤣
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Being in Australia heap have you ever experimented with sunlight exposure to fight herpes family viruses
or did you find antivirals more powerful then being outdoors in natural light?
Like sunbathing? Not really. But have had times where ive had plenty of sun exposure but cant say ive noticed much. Years ago my vit d was low but that could also have been apart of doing shift work. I increased my vit d levels but didnt notice anything. Now i take cod liver supps as its high in vit D and vit A and omega 3s.
For me famvir has been the best antiviral. Even looking back, it worked better than valcyte for me i think. Valcyte may have helped in the long run but i didnt feel great on it.
 

Hd-x

Senior Member
Messages
244
It seems the aerobic metabolism is the issue in many of us. So i try to stay in that anaerobic range and singles seem to work best for me
From time to time I try higher Rep ranges (currently I am "testing" Supersets with light weights), but have the same problem like you describe that the aerobic metabolism didnt work well and doing so exhausted us earlier (then staying on the anaerobic + Low rep side)
There are (in my case) also some wired limitations on few muscle groups that hinders me somewhat on squats/deathlifts/rows. The recovery rate from my legs, forearm muscles, erector spinae is pretty bad+slow. Using lifting straps helps with the forearm problems, certainly it didnt do anything for leg//erector issue. I was never able to figure out the reason for this partly strange recover issue. (all the other muscle groups show a normal recovery rate)

Hopefully i have found a good source of isoprinosine i will order soon
I dont know how long shipping would take from EU to AU, but there is pharmaceutical grade isoprinosine availible at Ebay EU. I dont know if this may be any helpfull for you, but if you dont find isoprinosine in yours country , I can pn you few EU seller links.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I dont know how long shipping would take from EU to AU, but there is pharmaceutical grade isoprinosine availible at Ebay EU. I dont know if this may be any helpfull for you, but if you dont find isoprinosine in yours country , I can pn you few EU seller links.
I will keep you in mind. I have a well priced source from india and hope shipping is only a week. If famvir isnt in supply here soon i will get famvir the same.
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
For me famvir has been the best antiviral. Even looking back, it worked better than valcyte for me i think. Valcyte may have helped in the long run but i didnt feel great on it.
. I don’t recall but were you ever weak to the point you couldn’t work or exercise, ever cognitively fogged?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
. I don’t recall but were you ever weak to the point you couldn’t work or exercise, ever cognitively fogged?
Years without exercing. But basically worked part time with alot of sick time and several stints off sick for several weeks at a time. 3 months off work at the beginning of 2015 and 2016 both with shingles. Seemed along time where i was more or less in bed and would only be out of bed for work 2 or 3 days a week after i popped a sudafed or modafinil and a tramadol to go to work. I didnt have an option of not going to work. Miserable times and its starting to feel like that again. I finished work yesterday and dived in bed asleep for 3 hours and woke up had dinner some tv and in bed. Now awake, modafinil, tramadol and ready for work 😩
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
Ouch, that’s major affliction. I feel for you and you remain employed! That takes really strong determination.
I could work even part time. However, even standing or talking too much makes me ditzy. It’s hell either way. Isolation has its own set of challenges, liie having too much time being consumed with this stuff.
 
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heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Have you ever tried Mildronate (or similar stuff) for enhancing stamina? (there was a CFS Study around it)
Cardarine. Works great but only noticeable when exercising, not at rest and normal every day stuff. But im familiarwith mildronate, have you tried it?