Abilify during crash? Save crash?

[leokitten]

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?

Can’t advise you on such things unfortunately, though I’m sorry to hear about your situation. I know how you feel, in a similar place for the last few months. There are risks with everything, I was fortunate that low dose Abilify gave me a wonderful 4 months, from bedridden to almost normal. Then benefits slowly started reducing over a few months until I decided to stop to try and reset tolerance. Reverted back to where I was before Abilify. In a month or so I’m ready to try it again it will be like 6 months.

Low dose Abilify takes a couple weeks or so to start working it seems in pwME for who it works, you need to be on the right low dose for you and it has to accumulate enough in your body. It won’t initially feel like it’s working at all, but then, if it works for you, your will feel most or all of your ME symptoms virtually melt away over a couple days about two weeks into taking it.

Being non-stop ill for so many years, that feeling of being much of myself again was fucking fantastic. I was in tears I remember, I totally forgot what it felt to feel like that, to feel more or less normal, it had been so many damn years! It was so depressing when it started feeling that maybe down the road it wasn’t going to last. I really hope I’m in the subset of people that can cycle and it will work again after 5-6 month break, but I’m not getting my hopes up I have pretty textbook post-viral ME and nothing else has temporarily worked for me at all except for ld Abilify and keto.

 

[GlassCannonLife]

Can’t advise you on such things unfortunately, though I’m sorry to hear about your situation. I know how you feel, in a similar place for the last few months. There are risks with everything, I was fortunate that low dose Abilify gave me a wonderful 4 months, from bedridden to almost normal. Then benefits slowly started reducing over a few months until I decided to stop to try and reset tolerance. Reverted back to where I was before Abilify. In a month or so I’m ready to try it again it will be like 6 months.

Low dose Abilify takes a couple weeks or so to start working it seems in pwME for who it works, you need to be on the right low dose for you and it has to accumulate enough in your body. It won’t initially feel like it’s working at all, but then, if it works for you, your will feel most or all of your ME symptoms virtually melt away over a couple days about two weeks into taking it.

Being non-stop ill for so many years, that feeling of being much of myself again was fucking fantastic. I was in tears I remember, I totally forgot what it felt to feel like that, to feel more or less normal, it had been so many damn years! It was so depressing when it started feeling that maybe down the road it wasn’t going to last. I really hope I’m in the subset of people that can cycle and it will work again after 5-6 month break, but I’m not getting my hopes up I have pretty textbook post-viral ME and nothing else has temporarily worked for me at all except for ld Abilify and keto.

Interesting, thank you! I hope it works again for you.

You tried antivirals etc? I also haven't found anything to work for me yet.. Only tried valcyte for 3 months once though and I feel like it started working a little then I crashed and lost the progress and then ran out of the script lol..

 

[leokitten]

Interesting, thank you! I hope it works again for you.

You tried antivirals etc? I also haven't found anything to work for me yet.. Only tried valcyte for 3 months once though and I feel like it started working a little then I crashed and lost the progress and then ran out of the script lol..

Yes I’ve tried pretty much everything including antivirals, Valcyte and Famvir both for years in the beginning. Didn’t prevent decline.

I haven’t read your history pardon me don’t know how long you’ve been ill, but one single advice I would say to you if you are very recently ill… would yell it back to myself if I could, and others said to me years ago in the beginning.

DO WHATEVER IT TAKES, WHATEVER IT TAKES, TO QUIT WORKING, STOP YOUR ENTIRE LIFE, TO REST AND RECOVER FOR A COUPLE YEARS OR SO

It’s the only chance you might have of spontaneously recovering if you got ME as an adult. It’s the only away and worth the shot and risk if I were to do it again. Alas our society just doesn’t easily allow that, especially when most of us got ME after terrible viral infection but many years before COVID came along.

People looked at us like we were crazy for describing the same symptoms that are long COVID. Didn’t have support to stop my life and rest in the beginning and now this will likely be the rest of my life. I would be happy to die anytime soon honestly it would be a blessing, this isn’t a life we are zombies not living and waiting to die.

 

[GlassCannonLife]

Yes I’ve tried pretty much everything including antivirals, Valcyte and Famvir both for years in the beginning. Didn’t prevent decline.

I haven’t read your history pardon me don’t know how long you’ve been ill, but one single advice I would say to you if you are very recently ill… would yell it back to myself if I could, and others said to me years ago in the beginning.

DO WHATEVER IT TAKES, WHATEVER IT TAKES, TO QUIT WORKING, STOP YOUR ENTIRE LIFE, TO REST AND RECOVER FOR A COUPLE YEARS OR SO

It’s the only chance you might have of spontaneously recovering if you got ME as an adult. It’s the only away and worth the shot and risk if I were to do it again. Alas our society just doesn’t easily allow that, especially when most of us got ME after terrible viral infection but many years before COVID came along.

People looked at us like we were crazy for describing the same symptoms that are long COVID. Didn’t have support to stop my life and rest in the beginning and now this will likely be the rest of my life. I would be happy to die anytime soon honestly it would be a blessing, this isn’t a life we are zombies not living and waiting to die.

Haha damnit I wish you found me a few years ago! I would say that to myself too.. Right around this time 3 years ago I went from mild to moderate (Feb) then to severe (housebound) by the end of May.. So stupid! I wish I could go back.

Also please don't lose hope! We will all die eventually so we may as well stay and suffer, no difference in the end but we might actually improve one day and get at least a few good years. That being said I've been struggling a lot recently too and yeah it is grim to put it lightly.


Edit: but so being super careful during your LDA journey didn't seem to reduce the risk of it losing effect? I remember reading you starting it out when I went through the thread a month or so ago and you were very determined to pace and be careful, go up super slow etc. I thought that was also the right plan but it seems like it didn't help..? Thoughts on that (if you're well enough to write)?

 

[Shanti1]

Hi @GlassCannonLife I am holding out hope for you! I was just PMing with someone who was severe and now has days where he feels like he is in remission. At my worst, I was moderate, but I am now back to mild. For myself, I attribute this to addressing stealth infections, food sensitivities, and finding medications that provide some correction to the impacted pathways in my ME/CFS brain. What works for each of us is going to be highly individualized, but I think the key is to keep trying... carefully, with low doses working upward.

I remember being struck by Dr. Henery Bonilla's presentation on Abilify at the 2021 IACFSME conference. He presented the retrospective study of 101 patients treated with Abilify in which they reported a 74% response rate (ref), but he also presented a case study in which he videotaped a pre-Abilify patient, basically crawling down the hallway of his office, and his post-Abilify follow-up, where the man walked normally down the hall and was basically in remission. Anyhow, I thought of this because you asked about starting it in a crash and this patient was described as being in a "six-month-long severe crash".

Of course, not everyone responds to Abilify. For example, when I tried it I felt more sedated and slowed down, but my ME/CFS does not involve any anxiety, insomnia, or "wired" feeling. I returned to my baseline a day or two after discontinuing it, despite the long half-life.

 

[elvira]

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

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.

@Hip Do you think these worsenings can subside over time or are they permenant? The study only followed them for 3-6 months.

Like @GlassCannonLife I’m doing very poorly after covid.

 

[Hip]

@Hip Do you think these worsenings can subside over time or are they permenant? The study only followed them for 3-6 months.

Hard to say, some people who were healthy and developed long COVID improved after 6 months or so, but others continued to have long COVID.

Maybe the same might apply to existing ME/CFS patients who were worsened by COVID, some might get better, others perhaps might not.

 

[hmnr asg]

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

Hi there and sorry for the late reply.
I havent been on that forum for a while now. Abilify pooped out on me and regardless of a long hiatus it just never worked again. I changed the dose a few times too but no luck. So I have given up on that at this point.

I have no idea if it would pull someone out of a crash im sorry i couldnt be of more help.

 

[Quilp]

Yes I’ve tried pretty much everything including antivirals, Valcyte and Famvir both for years in the beginning. Didn’t prevent decline.

I haven’t read your history pardon me don’t know how long you’ve been ill, but one single advice I would say to you if you are very recently ill… would yell it back to myself if I could, and others said to me years ago in the beginning.

DO WHATEVER IT TAKES, WHATEVER IT TAKES, TO QUIT WORKING, STOP YOUR ENTIRE LIFE, TO REST AND RECOVER FOR A COUPLE YEARS OR SO

It’s the only chance you might have of spontaneously recovering if you got ME as an adult. It’s the only away and worth the shot and risk if I were to do it again. Alas our society just doesn’t easily allow that, especially when most of us got ME after terrible viral infection but many years before COVID came along.

People looked at us like we were crazy for describing the same symptoms that are long COVID. Didn’t have support to stop my life and rest in the beginning and now this will likely be the rest of my life. I would be happy to die anytime soon honestly it would be a blessing, this isn’t a life we are zombies not living and waiting to die.

Leo, that last paragraph......

Please, please no, I have been ill since I was 24, I am now 51. Everytime I think I might have to exist like this for the rest of my life, I break down and cry. I can't live like this, I just can't. What sort of torture is this ? People who are healthy couldn't begin to imagine what we have to go through every second of every day. And yes Leo, death cannot come quickly enough for me. I will be glad when it's all over, and these aren't just the ramblings of an emotional man, but words forged by years of thoughts, contemplations, feelings amd most of all sufferings.
There are so many times, when on my own I have thought about getting it over with. For a moment it feels like knowing I have a way out is so intently relieving that I the decision no longer becomes mine, and the inevitable has to happen.

I wish you all the best, all of you and I hope Abilify or something better comes along. It has to, for all our sakes.

 

[Hip]

@GlassCannonLife , just wondered how many out of the following ME/CFS treatments you have tried:

ME/CFS treatments that have a track record of helping, and are employed by ME/CFS doctors:

GENERAL ME/CFS TREATMENTS:
Methylation protocol (includes B12 and active folate; can improve ME/CFS)
Low-dose naltrexone (only works for around 10% of patients, but when it works, it works well)
Abilify (can make major improvements in ME/CFS, but may stop working after some weeks)
Nimodipine (calcium channel blocker which improves blood flow to brain)

ANTIVIRAL AND IMMUNE BOOSTING ME/CFS TREATMENTS:
Oxymatrine for enterovirus ME/CFS (antiviral immunomodulator) can make major improvements
Epivir for enterovirus ME/CFS can result in mild improvement
Valcyte (for EBV, HHV-6 or cytomegalovirus ME/CFS) can make major improvements
Valtrex or Famvir (for EBV ME/CFS)
GcMAF as transdermal cream, capsules or injections (immunomodulator)
Tenofovir (antiviral immunomodulator) can make major improvements

PEM:
Pyridostigmine (reduces or eliminates PEM)
D-ribose (to speed up PEM recovery)
See also the PEM-busters thread: https://forums.phoenixrising.me/threads/48438

EXPENSIVE AND HARD TO OBTAIN TREATMENTS:
Ampligen (antiviral immunomodulator) for enterovirus or herpesvirus ME/CFS
IVIG (works well for pain)
Interferon beta for enterovirus ME/CFS (antiviral immunomodulator, benefits usually do not last)



Some like oxymatrine, Epivir, tenofovir, pyridostigmine and LDN are inexpensive and easy to obtain.

Tenofovir incidentally might have effect against SARS-CoV-2, as it inhibits RNA-dependent RNA polymerase.

 

[GlassCannonLife]

@GlassCannonLife , just wondered how many out of the following ME/CFS treatments you have tried:

ME/CFS treatments that have a track record of helping, and are employed by ME/CFS doctors:

GENERAL ME/CFS TREATMENTS:
Methylation protocol (includes B12 and active folate; can improve ME/CFS)
Low-dose naltrexone (only works for around 10% of patients, but when it works, it works well)
Abilify (can make major improvements in ME/CFS, but may stop working after some weeks)
Nimodipine (calcium channel blocker which improves blood flow to brain)

ANTIVIRAL AND IMMUNE BOOSTING ME/CFS TREATMENTS:
Oxymatrine for enterovirus ME/CFS (antiviral immunomodulator) can make major improvements
Epivir for enterovirus ME/CFS can result in mild improvement
Valcyte (for EBV, HHV-6 or cytomegalovirus ME/CFS) can make major improvements
Valtrex or Famvir (for EBV ME/CFS)
GcMAF as transdermal cream, capsules or injections (immunomodulator)
Tenofovir (antiviral immunomodulator) can make major improvements

PEM:
Pyridostigmine (reduces or eliminates PEM)
D-ribose (to speed up PEM recovery)
See also the PEM-busters thread: https://forums.phoenixrising.me/threads/48438

EXPENSIVE AND HARD TO OBTAIN TREATMENTS:
Ampligen (antiviral immunomodulator) for enterovirus or herpesvirus ME/CFS
IVIG (works well for pain)
Interferon beta for enterovirus ME/CFS (antiviral immunomodulator, benefits usually do not last)



Some like oxymatrine, Epivir, tenofovir, pyridostigmine and LDN are inexpensive and easy to obtain.

Tenofovir incidentally might have effect against SARS-CoV-2, as it inhibits RNA-dependent RNA polymerase.

Thanks hip I'll reply properly in a bit just very weak. Before I forget, what do you think about ivermectin for LC/this situation? I tried a few days and it helped but gave me vision disturbances. Could try a lower dose but I thought it was just being an anti-inflammatory (and benzo potentiator) vs actually clearing virus or something. Are there even viral reservoirs left from covid.?

 

[Hip]

Are there even viral reservoirs left from covid.?

My memory is unfortunately getting worse and worse, but I think I did see some studies indicating that SARS-CoV-2 remains in the body in long COVID patients.

This would not be surprising, since we know enterovirus for example can be found in the tissues of enterovirus ME/CFS patients.

 

[GlassCannonLife]

My memory is unfortunately getting worse and worse, but I think I did see some studies indicating that SARS-CoV-2 remains in the body in long COVID patients.

This would not be surprising, since we know enterovirus for example can be found in the tissues of enterovirus ME/CFS patients.

Ok cool, thank you. No opinion on ivermectin then I guess? Hard to say isn't it.

Re the list, I have tried:

- a lot of methyl b12, hydroxocobalamin, and methyl folate over the years, helps a little bit with mood but unfortunately nothing else
- ldn did a few weeks in 2019 and only felt more brain fog - maybe should try more? I don't know how long you need to take it to assess the effects properly.
- Abilify I have but haven't tried yet
- wanted to get nimodipine from Alldaychemist but it keeps being out of stock..

- oxymatrine just made me feel worse while taking it (I have high il6 normally and no Th2 dominance)
- valcyte did 3 months at 450 mg (most I could get scripted). Felt like it was being mildly helpful but then I flared up a little and lost the benefit and doc refused to script more.. Would want to retry
- valtrex was 2 months into 3 g a day when got covid. Didn't notice any benefit by that stage. Been taking 1 g on and off the last month but might just take the rest at 3 g a day and see if anything happens..
- haven't tried epivir, gcmaf or tenofovir - would like to try at least tenofovir sometime

- haven't been able to access pyridostigmine
- ribose doesn't seem to do anything for me
- thanks yes it's a great collection of busters. Bcaas used to be mildly helpful but not with this intensity of a crash. Cumin helps a fair bit to block the symptoms temporarily

-haven't tried any of those last 3. Don't have any pain atm luckily.

Thank you very much for your help. I'll look into pyridostigmine and maybe tenofovir (and maybe epivir..?). I have a current script for ldn I could fill but not sure if it's worth trying again, happy to hear thoughts on that.

 

[Hip]

Ok cool, thank you. No opinion on ivermectin then I guess? Hard to say isn't it.

The latest study I read about ivermectin is that is only worked for COVID in countries with a high prevalence of Strongyloides (an intestinal parasite which ivermectin will easily kill). The implication is that ivermectin reduces COVID deaths by killing this parasite which can be life-threatening when immunity becomes weak.

It's possible ivermectin may have some other benefits, but this effect on Strongyloides might explain the bulk of its efficacy.

oxymatrine just made me feel worse while taking it

According to Dr Chia, that is a good sign, since oxymatrine ramps up the immune fight against viruses, and that in turn can worsen symptoms.

This is why Dr Chia often starts patients on just half a tablet for the first week or two, and then slowly increases the dose week by week.

Dr Chia observes that after around 6 week or so on oxymatrine with slowly increasing doses, ME/CFS patients may actually be hit with a bout of flu-like fever for a few days, when they feel really bad. This fever episode is the antiviral immune response reaching its crescendo, and after those days of fever, patients report feeling much better, and it's all downhill from then.

The oxymatrine Wikipedia article provides links to further info: https://me-pedia.org/wiki/Oxymatrine

Did you ever get tested for enteroviruses using the sensitive neutralization test recommended by Dr Chia?


Dr Chia uses tenofovir, and says it works for about less than one third of his patients. But when it works, the results can be major.

Epivir is a very well tolerated drug, but even if it works, it's effects are only mild.

 

[GlassCannonLife]

The latest study I read about ivermectin is that is only worked for COVID in countries with a high prevalence of Strongyloides (an intestinal parasite which ivermectin will easily kill). The implication is that ivermectin reduces COVID deaths by killing this parasite which can be life-threatening when immunity becomes weak.

It's possible ivermectin may have some other benefits, but this effect on Strongyloides might explain the bulk of its efficacy.





According to Dr Chia, that is a good sign, since oxymatrine ramps up the immune fight against viruses, and that in turn can worsen symptoms.

This is why Dr Chia often starts patients on just half a tablet for the first week or two, and then slowly increases the dose week by week.

Dr Chia observes that after around 6 week or so on oxymatrine with slowly increasing doses, ME/CFS patients may actually be hit with a bout of flu-like fever for a few days, when they feel really bad. This fever episode is the antiviral immune response reaching its crescendo, and after those days of fever, patients report feeling much better, and it's all downhill from then.

The oxymatrine Wikipedia article provides links to further info: https://me-pedia.org/wiki/Oxymatrine

Did you ever get tested for enteroviruses using the sensitive neutralization test recommended by Dr Chia?


Dr Chia uses tenofovir, and says it works for about less than one third of his patients. But when it works, the results can be major.

Epivir is a very well tolerated drug, but even if it works, it's effects are only mild.

Thanks. I checked my notes - I went up to 4 pills over the course of a month and just felt increasingly worn out and brain fogged from them so I went back down to 2 then eventually stopped.. This is when I was first crashed to severe though so I was impatient and naive, constantly doing too much. Is that a good response though or just normal extra inflammation etc..? Should have maybe just rested more and taken more or more slowly? Don't think I could handle trying it now though as any more symptoms would be too much to handle as I am..

Never been tested for enterovirus as access to proper tests is very limited in Australia unfortunately.

 

[Hip]

I checked my notes - I went up to 4 pills over the course of a month and just felt increasingly worn out and brain fogged from them so I went back down to 2 then eventually stopped..

How long were you taking oxymatrine in total, including the period when you went back down to 2 pills?

If oxymatrine works for you, Chia found patients would generally see improvement by 4 to 6 weeks; but a few patients may take more than 3 months.

Which pills were you taking, the Equilibrant ones, or other brands? Because my guess is that the other brands may have more oxymatrine than Equilibrant, so would have a stronger effect.

Dr Chia unfortunately does not detail the oxymatrine content of his Equilibrant pills. So he says take take up to 6 tablets daily, but oxymatrine dose in those pills is not known.

On the Alternative Medicine Solutions website they suggest an oxymatrine dose of 400 to 600 mg, which means one or or two of their 300 mg pills.

Never been tested for enterovirus as access to proper tests is very limited in Australia unfortunately.

Same in the UK, I had to send blood serum to Europe for my coxsackievirus B tests.

I was hit by my virus in 2006, but it was well over a decade later before I managed to find a lab in Europe which offered the appropriate antibody neutralization test.

 

[GlassCannonLife]

How long were you taking oxymatrine in total, including the period when you went back down to 2 pills?

If oxymatrine works for you, Chia found patients would generally see improvement by 4 to 6 weeks; but a few patients may take more than 3 months.

Which pills were you taking, the Equilibrant ones, or other brands? Because my guess is that the other brands may have more oxymatrine than Equilibrant, so would have a stronger effect.

Dr Chia unfortunately does not detail the oxymatrine content of his Equilibrant pills. So he says take take up to 6 tablets daily, but oxymatrine dose in those pills is not known.

On the Alternative Medicine Solutions website they suggest an oxymatrine dose of 400 to 600 mg, which means one or or two of their 300 mg pills.





Same in the UK, I had to send blood serum to Europe for my coxsackievirus B tests.

I was hit by my virus in 2006, but it was well over a decade later before I managed to find a lab in Europe which offered the appropriate antibody neutralization test.

Yeah would have been around 6 weeks total. I think that's why I stopped, because I didn't notice any benefit just the worsening.. Maybe I should have done more though.

I had the white tiger brand so some matrine as well as oxymatrine, I believe the matrine causes worse brain fog though so maybe that's why it was so bad..?

Crazy about the testing.. I could just never find the effort to organise the sample shipping. So many regrets!

 

[Hip]

I had the white tiger brand so some matrine as well as oxymatrine, I believe the matrine causes worse brain fog though so maybe that's why it was so bad..?

The White Tiger has 200 mg of oxymatrine per tablet, plus as you say matrine. Compared to the Alternative Medicine Solutions which is pure oxymatrine, I found White Tiger made me dizzy for two hours after taking each pill, which I am guessing is due to the matrine. So I've always used the AMS brand.

I never found any benefit from oxymatrine myself though.

 

[GlassCannonLife]

The White Tiger has 200 mg of oxymatrine per tablet, plus as you say matrine. Compared to the Alternative Medicine Solutions which is pure oxymatrine, I found White Tiger made me dizzy for two hours after taking each pill, which I am guessing is due to the matrine. So I've always used the AMS brand.

I never found any benefit from oxymatrine myself though.

Yeah I had the same dizziness! Did you have a transient worsening while taking it?

 

[Hip]

Did you have a transient worsening while taking it?

In my first 5 ot 6 years with ME/CFS, I had pretty bad mental health symptoms (appearing after the mild brain damage of the encephalitis which triggered my ME/CFS). These symptoms included depression, anhedonia, anxiety, mild psychosis and others.

I found that oxymatrine greatly worsened my depression, so was unable to take it, much as I wanted to try it. Only many years later, when I had improved a bit in health was I able to take oxymatrine without getting depression. But then unfortunately I found it did not help.