Abilify during crash? Save crash?

[GlassCannonLife]

Doing really badly at the moment. Can barely use phone. Massive PEM/crash from covid.

Has been a little over a month, propped up on pregnenolone and cumin (as many of you probably know from all my whining!)


Have Abilify at home - worth trying now? Can it help save my crash and if it wears off I'd go back to pre-covid health.? Or too much mixed in at once? Anyone tried starting during bad PEM?

Thanks!

 

[Judee]

from all my whining!)

What you've been going through is awful. We understand what that's like so please don't feel like you're whining. I don't think anyone here thought that.

As to the main reason for your post, I'm sorry I'm not able to answer that. I do however, remember seeing this being asked recently in the FB group, but when I was on there still hadn't been a reply that I remember. Sorry.

 

[GlassCannonLife]

What you've been going through is awful. We understand what that's like so please don't feel like you're whining. I don't think anyone here thought that.

As to the main reason for your post, I'm sorry I'm not able to answer that. I do however, remember seeing this being asked recently in the FB group, but when I was on there still hadn't been a reply that I remember. Sorry.

Thanks @Judee

Ah what a shame it wasn't answered! Hopefully someone has an idea..

Yeah the struggle has been a bit too real, barely getting through eating without crashing and doing phone tiny amounts..

 

[GlassCannonLife]

@hmnr asg you might have been around the fb groups enough to know if anyone has tried this?

 

[Judee]

Okay, so here is a copy of that post on FB:

Q: Did Abilify get anybody out of a bad crash?

And the only pertinent reply was:
Yes! I was in a crash for several years when I started abilify. Within 14 days I saw improvement. If you search my name in the group you can find my posts about my experience with LDA and how drastically it has improved my quality of life.


Another post that I don't fully understand said:

EDIT: it has been 10 days now, I am still out of constant PEM. Don't get me wrong, I'm still extremely limited, but I feel better.
Abilify pooped out and I stopped for 8 days. I restarted at my full dose, and it pulled me out of constant PEM. It was an incredible transformation that only took 2 days.
No taper, just stopped and restarted with 8 days in between. Just my experience, ymmv.

However, I also read of people going into a crash when starting Abilify. It seemed to be in many cases, that they just did not start on a low enough dose.

I know it would probably be very hard for you right now but if there is a way to join the FB group it might help. Or if you have someone that helps with your care, maybe they could go on there and look. It's a very active group/page.

 

[GlassCannonLife]

Okay, so here is a copy of that post on FB:

Q: Did Abilify get anybody out of a bad crash?

And the only pertinent reply was:
Yes! I was in a crash for several years when I started abilify. Within 14 days I saw improvement. If you search my name in the group you can find my posts about my experience with LDA and how drastically it has improved my quality of life.


Another post that I don't fully understand said:

EDIT: it has been 10 days now, I am still out of constant PEM. Don't get me wrong, I'm still extremely limited, but I feel better.
Abilify pooped out and I stopped for 8 days. I restarted at my full dose, and it pulled me out of constant PEM. It was an incredible transformation that only took 2 days.
No taper, just stopped and restarted with 8 days in between. Just my experience, ymmv.

However, I also read of people going into a crash when starting Abilify. It seemed to be in many cases, that they just did not start on a low enough dose.

I know it would probably be very hard for you right now but if there is a way to join the FB group it might help. Or if you have someone that helps with your care, maybe they could go on there and look. It's a very active group/page.

Thank you! Very useful. I might ask my wife

 

[Gijs]

COVID is a nasty virus. Did you get vaccinated? I hope you feel better soon. Hang on!

 

[GlassCannonLife]

COVID is a nasty virus. Did you get vaccinated? I hope you feel better soon. Hang on!

Thanks, yeah was double vaccinated. Could have (should have?) had a booster but the 2nd vax already gave me a lot of side effects so I didn't do it..

 

[GlassCannonLife]

@leokitten maybe you have some thoughts on this? Can't remember who else was active in the Abilify discussion.. Maybe @jaybee00?

Or perhaps @Hip? Not to tag you too often..

Or @Shanti1, your post in the other thread was very insightful - do you have a take?

Thanks all

 

[Hip]

Or perhaps @Hip? Not to tag you too often..

I believe Abilify takes some weeks to begin working, so it may not be quick enough, but that's anyone's guess.

You could look at the PEM Busters thread for some anti-PEM ideas, but a month crash is not typical PEM, it may instead be a general worsening of ME/CFS for some reason. If you catch a new virus, that can worsen ME/CFS. And especially in the early years of ME/CFS, the disease can worsen just on its own.

PEM usually lasts for some days or even a week. Having said that some people have very long PEM periods that last months.


Did you see my thread on high-dose selenium? That made substantial improvements for me, but it does not seem to work for most ME/CFS patients.

 

[GlassCannonLife]

I believe Abilify takes some weeks to begin working, so it may not be quick enough, but that's anyone's guess.

You could look at the PEM Busters thread for some anti-PEM ideas, but a month crash is not typical PEM, it may instead be a general worsening of ME/CFS for some reason. If you catch a new virus, that can worsen ME/CFS. And especially in the early years of ME/CFS, the disease can worsen just on its own.

PEM usually lasts for some days or even a week. Having said that some people have very long PEM periods that last months.


Did you see my thread on high-dose selenium? That made substantial improvements for me, but it does not seem to work for most ME/CFS patients.

Thanks Hip, yeah I tried that years ago and unfortunately didn't help.

Yes this is a crash after covid - I think it is a general worsening but I also can't seem to get it to level off and start improving. Trying extreme minimum energy expenditure for the past few days and the next week to see if I'll have some progress and can come off some of my PEM blockers.. But after that I'll either have to face the music or try something like Abilify.

Currently can barely tolerate to eat normally and go to the toilet, and use phone a few min to communicate (doing no talking if at all possible), which is kind of my limit in terms of how low I can go activity wise.. Just keep having this super angry inflammation feeling going on and constantly almost crashing despite the blockers.

 

[GlassCannonLife]

@Hip do you think it could be non-crash related? Like something off with me because of the covid that is causing this horrible crashing/worsening that I should just get checked out in the hospital properly? That decision has been my issue this entire time so far..

 

[Hip]

@Hip do you think it could be non-crash related? Like something off with me because of the covid that is causing this horrible crashing/worsening that I should just get checked out in the hospital properly? That decision has been my issue this entire time so far..

A lot of ME/CFS patients have got worse after COVID, according to Dr Chia. See this conference presentation summaru:

Covid-19 infection in patients with myalgic encephalitis/chronic fatigue syndrome (ME/CFS) – a preliminary study.

John Chia (MD) from Lomita,CA, USA looked at Covid-19 infection in patients with ME/CFS. Acute infection with Covid-19 is often followed by long lasting debilitating symptoms, known now a Long-Haul Covid. This study looked at whether those with pre-existing ME/CFS would get a more severe illness if they contracted Covid-19. 26 ME/CFS patients were studied and they also had enterovirus infection (EV). Prior EV was diagnosed using stomach biopsies.

Patients who developed Covid-19 were followed over 3-6 months. 15 had mild symptoms, and 11 were bedridden with flu-like symptoms, fatigue and brain fog for 2-4 weeks. 14 of the 26 felt worse ME/CFS symptoms for months after the acute infection. 4 of the 11 were hospitalised. One had perforated sigmoid diverticulitis, 3 had pneumonia (treated with off- label use of remdesivir and steroids). Recovery took up to 3 months for the latter.

During follow-up, enteroviral proteins were detected in peripheral blood leucocytes in 13 patients, but none had ongoing Covid-19 proteins.

He concluded that Covid-19 infection had caused significant worsening on ME/CFS symptoms in half the patients and 4 required hospitalisation. Remdesivir had led to marked improvement of ME/CFS symptoms and needs further study.

Source: https://anzmes.org.nz/wp-content/uploads/2021/10/IACFS2021RV3.pdf



Have you looked into Dr Chia's oxymatrine treatment for enterovirus ME/CFS? This is a potent immune stimulating herbal extract which helps fight certain viruses.

There was one report of the supplement nicotinamide mononucleotide (NMN) helping acute COVID patients, but I am not sure if it would be helpful for long COVID.

Remdesivir might be useful if you could get hold of it, but I am not sure how easy it is to access.

 

[GlassCannonLife]

@Hip thanks, no I hadn't seen Chia's work regarding this.

I tried oxymatrine in the past with no success, it just made me feel more worn out and inflamed vs baseline - do you think it's worth a shot now? I don't know if anything like that would have changed with me. Also more inflammation might not be the best right now..

Don't think I can get remdesivir but I feel like I should have just gone in with bad covid symptoms in the middle of the illness and asked for some in hindsight..

I think it's just over for me and I'll be joining the extremely severe crowd soon..

 

[Hip]

You might want to look into any anti-inflammatory substances which have been helpful for COVID or long COVID. I think Nigella sativa (black seed oil) is one.

Also there is hopes for a clinical trial for fluvoxamine for long COVID.

Dr Bruce Patterson has an experimental long COVID drug treatment.

68% of long COVID patients have Epstein-Barr virus reactivation, Ref: 1

 

[GlassCannonLife]

You might want to look into any anti-inflammatory substances which have been helpful for COVID or long COVID. I think Nigella sativa (black seed oil) is one.

Also there is hopes for a clinical trial for fluvoxamine for long COVID.

Dr Bruce Patterson has an experimental long COVID drug treatment.

68% of long COVID patients have Epstein-Barr virus reactivation, Ref: 1

Thanks, been taking black seed oil the entire time.

I saw fluvoxamine in the I-recover protocol but haven't tried to access it yet.

The maraviroc + statin approach is interesting but maraviroc is very expensive and hard to access.. I tried ivermectin and it does help but feels like it is doing the same thing as pregnenolone (and gave me weird eye side effects..) so I didn't think it was worth double dipping into that pot.

I can ask my doc about maraviroc but it seems like a long shot..

Thanks for your help though

 

[Hip]

@Hip do you think it could be non-crash related? Like something off with me because of the covid that is causing this horrible crashing/worsening that I should just get checked out in the hospital properly?

Some long COVID patients seem to have a non-ME/CFS form of long COVID, where their symptoms come from physical heart or lung damage. So it might be worth getting checked out by your doctor.

 

[GlassCannonLife]

Some long COVID patients seem to have a non-ME/CFS form of long COVID, where their symptoms come from physical heart or lung damage. So it might be worth getting checked out by your doctor.

Thanks. Covid-specific symptoms were mild and I was severe ME beforehand (20 CFIDS Scale). Just wondering about some crazy immune dysregulation or hyper-inflammatory condition..

Don't think it could be EBV as was on 3 g valtrex during and 1 g on and off since. Maybe CMV/HHV-6? But no other symptoms..

 

[leokitten]

If Abilify pooped out and then they took a break for only a week to then start it again I doubt it’s going to continue working for very much longer unless they take a very long break of months and it might never work again. Sorry I’m so tired I couldn’t follow what what being asked these last posts

 

[GlassCannonLife]

If Abilify pooped out and then they took a break for only a week to then start it again I doubt it’s going to continue working for very much longer unless they take a very long break of months and it might never work again. Sorry I’m so tired I couldn’t follow what what being asked these last posts

Sorry leo - I haven't tried Abilify before and am crashing into an abyss of extreme severity.. Not sure if I should try it now to see if I can save myself?