Deteriorating?

[godlovesatrier]

I feel like I'm going backwards at the moment. It's been 12 months on the Joshua Leisk protocol (most of it anyway) and in that time the covid vaccines have really beaten me up good and proper. Essentially I only really started to struggle in February of this year. I did some further experiments with Inosine, famvir, valtrex and the Oxford long covid probiotics. But they seem to have failed or made me worse.

Currently in a bad crash which I assume is viral as I feel exhausted all the time and am fatiguing much more easily + brainfog is certainly worse.

What worries me though is my reaction to things. So I used to take 5g of bcaas and get quite a boost from that. It still gives me a boost but nowhere near as much. Thing is tho is this just improvement of my general function or is it deterioration?

2 weeks ago I almost collapses in the shower. I lost hearing in both ears and grew weary. I laid down on the bed for several hours but had shocking weakness. I eblievd this was an attack of dysautonomia as that symptom for me is mild to non existent. As I type this I don't have it.

It took me 3 days to recover from the above crash. Then I thought I'd give Famvir one last try but wishing I hadn't bothered. Took it for 8 days and for the first 6 was very energised by it with much more disturbed sleep (my sleep is actually really good these days I get 9 or 10 hours a night). After that tho I had a crash from too much exertion and the day after I took my usual famvir dose but experienced horrendous brainfog, fatigue and dizziness. Now I write this I'm comforted in knowing this did actually happen once before I think while I was on famvir. I noticed I'd feel better, crash and then in the days after every time I took famvir I'd experience blinding dizziness and brainfog which was entirely not present before.

So maybe I'm actually improving? My energy envelope had improved quite a lot until this latest "dip". This time last year I had my az Vax no 2 and crashed for about 2 months. Lost the use of my legs for a few days and was weak as hell for at least 2 to 3 weeks. So this is on a par I guess with that. Comforted to know that also passed and I went onto feel better than I had in 5 years.

Guess I'm just looking for some emotional support as I start a new job in a week and I'm panicking that I'll be as brain fogged as I was last year at work. When the brain fog got bad not a single thing anyone said went into my brain. But this brainfog issue was caused my b vitamins at the time. I stopped those and it went away. But right now I think the fog is just from fatigue. But its been fairly relentless.

On the plus side it's only been two days since I stopped the famvir.

So just some background. Antivirals I've noticed make me unstable which means I overreach on them only to crash horrendously and at that point I have to stop or I can't work. I seem to be allergic to valtrex at the correct doses required and it gives me bad renal calculi + kidney swelling.
Famvir is fine but it stimulates me which causes me to crash so I end up in a worsened energy cycle. Prob why I'm in a bad way right now!

Josh Leisk protocol does keep me going but I'm convinced it's not strong enough for the viral load. As relapses do happen and they take weeks or months to recover from. The original Josh Leisk protocol doesn't seem to work like it once did.

Someone in another group said Dr chia said in a talk that viruses get used to the treatments we give and become resistant to them over time. Not sure that's true. But if so we're surely buggered taking any of these treatments.

 

[Jyoti]

Awww...I am really sorry to hear all of this, @godlovesatrier! You have worked SO hard (as have so many of us) to get well, to be well, to bushwhack the paths that might lead to health and it sounds like you are in another valley.

Perhaps, as you note, you actually are improving? It is possible. Sometimes I am very tempted to adopt the stance of some of our members here that says: there is nothing that is likely to change anything so the challenge is to learn to live with what is. It just seems easier (and more reality-based!) some days. But your devotion to finding a way to get better -- I admire it. And I have had my fingers crossed for you all year, hoping that Joshua's protocol would improve things. Maybe a few more days out from the Famvir you will start to regain some energy. I do hope so.

Those Covid vaccinations have wreaked havoc, upended progress all over, though. I am glad to not have had Covid so far, but I have lost half of the last year to the vaccination side effects, like you have.

I'm thinking of you and sending you loads of good wishes for the start of your new job. I am sure they will be lucky to have you.

 

[godlovesatrier]

That's Jyoti.

Can't be doing with this brainfog. Endocrinologist told me to stop reishi and oat bran becuase of the 5-ar stuff. But turns out my t levels are low even if I do stop taking it all. As usual specialists give good advise but there's no wholistic approach looking at the patient as a whole. I'm not actually sure how a GP can do that in today's world.

Thanks for your kind thoughts. I had a nice send off from my old place which I wasnt expecting. I've also found another patient in a telegram group who's working full time remote as a civil servant. That makes 4 full timers with ME I've found now.

Just so frustrating to he feeling so good on 250mg famvir and then for things to change so dramatically with a rather low level of exertion (which brought on said crash).

Now I've got this weird thing where I feel a bit better in the evening. Which hasn't been a symptom I've had in years! So weird.

Hopefully I am improving. Got rid of some very concerning and worrying symptoms. Hopefully this crash won't last much longer.

 

[BrightCandle]

That sucks mate it doesn't sound like you are having a good time. I crashed myself on Sunday trying to make some busts to paint with a resin 3d printer, the fact I can do that is astonishing but the cleanup was too physical. Thankfully crashes these days aren't that bad but I have spent all week feeling sorry for myself. This illness just sucks.

 

[Judee]

If you can, try to do ART (aggressive rest therapy) between now and the start of your new job. It might help break this crash you're in. I hope.

I'm so sorry you're going through all that. Some of that sounds very scary.

 

[godlovesatrier]

Hey Judee,

Yeah haven't left the house. Just sat here playing games, watching TV and feeding myself. That's it. I might be improving tho slowly. Just so frustrating when you can't figure out if it's a viral issue or some sort of metabolic or MiTo issue. Some things are easier to treat than others.

But hopefully I'll feel better in a week.

Sounds like you're in a similair place Bright. Crashes are normally 2 to 3 days for me to recover max which is just amazing and I can do more than I could this time last year. But this crash was certainly more scary.

It does suck. Just pisses me off we can't figure out what's wrong from one minute to the next.

 

[YippeeKi YOW !!]

Someone in another group said Dr chia said in a talk that viruses get used to the treatments we give and become resistant to them over time. Not sure that's true.

I know it's true of bacteria, and not sure why it wouldn't also be true of viruses. They're both living prokaryotic entities with the ability to defend themselves, so who knows ....

 

[godlovesatrier]

Yeah still I'm not sure that is true. I know members of this forum who've been on natural stuff for years and they say it's not only worked for them but they've stayed in one place.

I do wonder what full time work stress does though. I mean until you've stopped work is it even possible to not continually slide backwards.

Saying all that I'm trying to remain hopeful. This may just be a blip.

 

[Booble]

Good luck with the new job!

 

[YippeeKi YOW !!]

Saying all that I'm trying to remain hopeful. This may just be a blip.

That's a good policy .... remaining hopeful not only makes the journey a lot pleasanter, it may actually improve the destination ....

And blips are an absolute constant given with this. You've thrown a lot of changes at your system, and it may just be slowly letting out a sigh of relief and normalizing at wherever it is. Once it's thru sighing, you should pop back up to a new, higher base, no?

Keeping a really good thought for your new, courageous, undertaking. Going back into the workplace after all you've been thru isn't for the faint-hearted, which you definitely aren't.

 

[godlovesatrier]

That's what my gf said. Your body prob needs a rest tell you what tho these antivirals seem to make whatever causes my ME worse. I dont get it tho. So many patients tolerate them just fine. If I hadn't taken any part week I'd be fine.

Anyway I noticed that they work just fine as long as you don't take generics but then you crash on them even if your operating at an 8 when learner said light exercise was ok. I'm sure I'll recover anyway. Takes time.

 

[godlovesatrier]

Thanks to those that replied, managed to bounce back from the crash. Was a bit too spontaneous even by ME standards I think mixture of crashing from supplements (newer ones) and lack of sleep due to adrenal fatigue, messing up my cortisol levels causing ebv to re-activate, causing even more lack of sleep.

Also others on this forum are convinced I have a co-infection and that's why I have such a strange response to antivirals. Might also explain why ebv re-activates even with little sleep, as most people on this forum have poor sleep and yet don't all have ebv symptoms. I woke up with pharyngitis, which for me is 100% ebv.

Also I took some famvir this morning and tolerated the dose, with only mild brainfog and mild fatigue/body aches. So immune system must have corrected the viral load by itself. That probably also explains why I am milder than some, as my immune system still seems to be working.
I do feel a bit wired on the Famvir though so will be temporary dosing!

thanks @Judee for helping me make sense of this crash.

 

[Marylib]

Glad you bounced back a little @godlovesatrier . Been pretty crashed out myself lately and I admire your ability to hang in there. Good luck with the new job and staying as uncrashed as possible.

 

[godlovesatrier]

Hey Mary,

Thanks. Sorry to hear you're also struggling. It never ends does it! Just pulled myself out of another mini crash. At least I know exactly what causes each one. That helps.

Hope you're able to get back to baseline soon. I'm about 70% now was definitely 80 a few weeks ago. But still think this is viral.

I couldn't find any hard evidence but I did find one study showing ebv and stress can mess with hpa axis. And then a website where someone said ebv attacks the adrenal gland itself. Highly anecdotal but they might have a very good point.

I'll do another experiment with small doses of valtrex and see what effect that has. I'm expecting quite a dramatic effect. Have had some amazing days on valtrex and some pretty good days on famvir. But also bad crashes on both too when over exerting or stressed.
Not completely clear why the stress is such a bad combo but it appears to be very bad.