Abilify (Aripiprazole) might seem to be the last thing that could help someone with chronic fatigue syndrome (ME/CFS). Abilify is a second-generation antipsychotic that is FDA approved for schizophrenia but is used off-label for depression, Parkinson’s disease, autism and many other diseases.
Abilify is a “dopamine stabilizer”: at high doses it will inhibit dopamine production; at low doses it will increase it. (Image by Pexels from Pixabay)
If ME/CFS has never been associated with psychosis, why would an anti-psychotic help? Because when Abilify is used the way it is in ME/CFS, it does not have anti-psychotic properties. In fact, it operates so differently in ME/CFS that it could be called an anti-anti-psychotic drug. When given in the doses used in ME/CFS, it should actually make schizophrenia and similar diseases much worse.
Abilify is a “dopamine system stabilizer”; at the low levels it’s used in ME/CFS, it stimulates the D2 class of dopamine receptors (D2, D3, D4). At the higher levels prescribed in schizophrenia and other diseases, it inhibits them; i.e. in high doses, it inhibits dopamine production and stimulates it at lower doses.
One psychiatrist explained the Jekyll and Hyde nature of Abilify’s dopamine stabilizing role like this:
“Thus, Abilify can be seen, at the same time, as both an antipsychotic, and not an antipsychotic. It’s both an antidepressant, and not an antidepressant.”
Finding that drugs operate very differently at low or high doses does not appear to be that unusual. Low dose naltrexone, for instance, has very different effects than at the higher doses the drug is mostly known for.
The Gist
- Abilify is the drug that helped Whitney Dafoe communicate again.
- Abilify is a “2nd generation anti-psychotic” that was not used as an anti-psychotic in ME/CFS at all.
- Abilify is a “dopamine stabilizer”. When use correctly it tends to stabilize dopamine levels at more optimum levels.
- In the higher doses used to treat schizophrenia and other disorders Abilify reduces dopamine production. At the lower doses used in ME/CFS, though, it enhances dopamine production. (One might call it an anti-anti-psychotic.)
- In the brain dopamine is produced mostly in the basal ganglia region. Dopamine levels can affect “reward”, mood, energy production and movement.
- Infections have been shown to reduce dopamine levels. In fact, the reductions in dopamine levels due to pro-inflammatory cytokines provided one of the first keys to the idea that brain produces most of the symptoms that occur when we get an infection.
- It’s becoming clearer and clearer that dopamine has strong immune system effects and several recent reviews have proposed dopamine affecting drugs be used to fight neuroinflammation.
- Several ME/CFS and fibromyalgia studies suggest that low dopamine levels may be causing fatigue, pain and other symptoms
- This retrospective Stanford study analyzed the symptoms of 101 patients before and after using a low dose of Abilify. About 25 percent of patients did not respond but the 75% who did reported they experienced less fatigue, brain fog and PEM and better sleep. Side effects were minimal.
- Since the trial was not placebo-controlled we can’t tell how effective Abilify really is in ME/CFS but the results were promising and will hopefully provide the basis for a more rigorous trial.
Back in 2012, “erist” on Phoenix Rising reported that Abilify was one of the only things that could provide her with more “more energy, more appetite, much easier time getting up in the morning” but that the drug also brought “a lot of restless agitation, the wired/tired feeling, a general feeling of vibrating internally, burning skin, etc.”
A couple of years later “JeanieBeanie” reported that: “As of now the only time I can have a semblance of a real life is when I am taking the Abilify.” Over time, though, it would stop working and she would have to go off it, and then go back on it.
It was Abilify that enabled Whitney Dafoe, one of the most severely affected ME/CFS patients, to communicate for the first time in years.
The Study
In February of this year, Laurel Crosby PhD (lead author) and Hector Bonilla (MD) (senior author) published a Letter to the Editor: “Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): a retrospective study of 101 patients treated with a low dose of Aripiprazole”, in the Journal of Translational Medicine (Open access).
Back in 2012, Laurel Crosby was the first member of the Stanford Genome Technology Center (SGTC) to join Ron Davis in his ME/CFS studies. Hector Bonilla’s background in HIV/HCMV lead him to focus on the role inflammation plays in disease. He’s co-authored a variety of studies, including a recent one which documented “significant persistent symptoms and functional impairment, even in non-hospitalized patients with COVID-19“.
This was a retrospective study. It assessed a variety of symptoms on a simple 0-10 point scale before and after 101 patients tried Abilify. The patient’s symptoms appear to have been assessed whenever they visited the clinic. The doses ranged from 0.2 to 2 mg/day or about 7-100x’s less than the 15-30 mg/day than people with psychiatric or neurodegenerative disorders typically receive. The mean time each patient was on the drug was 7.8 months.
Since the trial was not placebo-controlled, it’s impossible to determine how much of a role placebo effects may have played in the results.
Results
Twenty-six percent of the patients either did not respond positively to the drug or experienced side effects which caused them to drop out of the study.
The 75% who responded seemed to respond quite well. The average fatigue and brain fog scores dropped (fatigue: 5.76 to 2.86, p<0.001; brain fog: 4.39 to 2.06, p<0.001), and sleep quality ratings went up (5.80 to 3.75, p<0.001). Post-exertional malaise (PEM) events became less frequent (from every 4 days to every 8 days) and were typically described as milder and shorter in duration. Eighteen of the participants reported that their PEM disappeared altogether.
When used for schizophrenia, bipolar disorder, autism, etc., Abilify’s side effects can include drooling, loss of balance, muscle jerking, twisting movement of the body, spasming eyelids, problems with swallowing, etc.
The very low doses used in the ME/CFS study, on the other hand, produced only mild side effects. Out of the 101 people in this study, five reported headache, four irritability/agitation, and two extreme agitation. That’s remarkably low for a study of this size. Weight gain can be a severe problem with Abilify. On average, patients gained 0.15 kg per month but while ten participants gained weight, eight lost weight.
Neuroinflammation Buster?
The authors of the Abilify study went straight to neuroinflammation to attempt to explain why low dose Abilify seems to help in ME/CFS.
The role dopamine plays in the immune system has been growing over time. A 2014 paper described dopamine as an important bridge between the nervous and immune systems.
A recent paper which highlighted dopamine’s role in the immune system hoped it would “prompt scientists … to consider (the) … neurotransmitter when targeting neuroinflammatory/neurodegenerative pathologies.” Another recent review specifically called for the development of dopamine affecting drugs to combat neuroinflammation.
The basal ganglia may be particularly susceptible to inflammatory events.
Studies suggest that low dopamine levels may indeed play a role in both fibromyalgia and ME/CFS. Reduced blood flows to the basal ganglia – the seat of dopamine production in the brain – were highly correlated with disabling pain and overall symptom scores in one FM (fibromyalgia) study.
Andrew Miller’s ME/CFS and hepatitis C studies suggest that infection-triggered inflammation in the basal ganglia may be producing the fatigue and other symptoms associated with ME/CFS and “sickness behavior”.
Miller highlighted the fact that the basal ganglia region appears to be uniquely sensitive to inflammation. Studies suggest that inflammation in the body may translate to inflammation in the basal ganglia region. A 2015 study found that an injury to the nerves in the body caused microglial activation in the basal ganglia region, which then reduced dopamine levels causing fatigue, pain and other symptoms.
Conclusion
Abilify is a dopamine stabilizer usually used in higher doses in diseases like schizophrenia and depression to reduce dopamine levels. The doses used in this ME/CFS study were approximately 7 to hundreds of times lower than used in those disease. When used in those doses, Abilify is believed to increase dopamine levels.
Abilify produced good results in a retrospective Stanford study. Approximately 75% of the 101 participants in the study responded positively, showing declines in fatigue, brain fog and post-exertional malaise (PEM). Sleep also improved. About 20% of the participants reported their PEM completely disappeared. It was unclear if neuroinflammation was affected.
With its nice size, remarkably limited side effects and good results Abilify seems to be off to a good start. A placebo-controlled study is needed, however, to determine how effective it is.
Because it was an unblinded, retrospective study it was impossible to assess what role the placebo effect may have played in the results. Drugs need to produce significantly better results than those found in the placebo in order to be considered effective.
The authors believe low dose Abilify may be reducing neuroinflammation in ME/CFS. Several fibromyalgia and ME/CFS studies suggest that low dopamine levels may be producing fatigue, pain and other symptoms.
Large, placebo-controlled studies are needed to determine if low dose Abilify is able to consistently help people with ME/CFS. Double-blinded tests, validated and regularly scheduled symptom tests would presumably be done in a more rigorous study. This study suggests, though, that the low dose Abilify saga in ME/CFS may be off to a good start.
If you’ve tried Abilify please let us know how it went in the comments.
Wondering if the two people that mentioned their success were on full strength or low dose?
Bring on the double blind placebo study ASAP!!!
Got the prescription today for 0.5mg
How did you get a prescription for this?
Hi Cort, is there an update on Abilify as a treatment for ME/CFS since this article?
How is it going so far, Nicholas?
Did you have to get it from a compounding pharmacy? I thought the lowest dose you could get was 2mg.
I just got my Abilify 15mg(that’s the only size they offer) from my friends from Bulgaria 28 pills for 10 Euro(easy to buy it there, no prescription, i wasnt able to get it here in UK…) I got a precise scale from eBay for 20 Euro , 0.001g accuracy and i’m starting my trial on 0,2mg. today. It is a round pill and i use a Milwaukee utility knife blade to cut it on small pieces , not so tricky . Will report the effect
I had very good progression(from homebound to 1-1.5 miles walk every day) for 1.5 year from 2021 to the end ot 2022 but looks like it stopped working for me. from january 2023 i’m mostly homebound with all the sympthoms i had 2 years ago, so i stopped the drug. Now 2 months later i’m considering to start it again, but i don’t know how to start(from 0.25mg and rising weekly to 1mg, as before, or just to start with 1mg) so this is my experience
George, have you gone back on Abilify? And if so, how has that worked for you?
Hoping you’re doing well.
Yes, I’m back on 1mg daily and i’m doing very well since the end of March until now!
Thanks for updating George! I’m going to ask my dr abt this for my long Covid.
My daughter and I were part of this study and Dr Bonilla is our Dr at Stanford. We both tried low dose abilify a multiple times for months without success. It gave us headaches and me, weight gain. The medical team there was really pushing us to try the drug multiple times as they have seen good success. Sadly, it didn’t work for us.
ich löse die 5 mg Tablette in einer Medizinalflasche in 50 ml Wasser auf, und entnehme davon mit einem Messzylinder z. B. 10 ml, dann habe ich die Dosis von 1 mg Aripiprazol. Wichtig ist, die Flasche gut zu schütteln, vor der Entnahme, dass die Verteilung gewährleistet ist. Zum Schlafen nehme ich Mirtazepin und eine geringe Dosis Quetiapin.
I was not in this study, however I have been on 2 mg of abilify for one month along with some other meds I had been taking. I have appointment with my phychiatrist Thursday. I must say that it is giving me my social life back instead of living under a rock.
I wasn’t in the study either, but I am taking 1 mg (1/2 of the 2mg) and enjoying sunrises for the first time in many years. However, I am struggling with weight gain and can’t seem to stop the increase much. I had restless legs syndrome which is also gone since starting the med. Fatigue was better, but I still have bad days.
I was prescribed 0.2 ml for 2 weeks and then increase by 0.2 every 2 weeks up to 2 ml. There is a syrup version and the pharmacy gave me a separate tiny syringe for dosing, since the one that came with it was not marked precisely enough. Started 2 weeks ago and no changes, but it seems to take a few months to work
Thanks Cort!
To whomever is interested, come join the discussion over at the “Abilify for ME/CFS” Facebook group.
Good to know! Thanks!
Thanks!
Ì have been on 5mg for about 5 years and it has helped my severe CFS enormously, I had a lot of anxiety side effects for the first few months but they then stopped. It has made a huge difference to my life.
Hey Nat, is this FB page still up? I’ve been trying to find it and have had no luck.
Thanks for reporting on this study, Cort. I just started Abilify two weeks ago (at 1 mg/day), and I very quickly felt more energy and less PEM than I’ve had in many months (not dramatically more, but noticeable). However, after four days on it, my body seemed to have forgotten how to sleep, so after a few more days I paused it for a week, and my sleep still has not recovered. (I’m sleeping half as much as usual, and often no more than 2 or 3 hours continuously.) Given that this is the only one of the many meds and supplements that I’ve tried over the years to produce a positive effect on my fatigue, I’m still feeling really hopeful about Abilify and am going to go back on it and see if I can find a dosage that works.
I was surprised to read in the article that they found improved sleep among participants. I thought I was being cautious by starting at 1 mg, but maybe the sleep effects go away at 2 mg? Anyone have any experience with this?
1mg is a high starting dose. Most start with 0.25, some even start at 0.1mg.
Abilify has a very long half life of ~75 hours which means it takes around a month for it to fully get out of your system.
This is really helpful information. Thanks, Nat.
I tried Abilify twice for about six months. It did give me a little boost in energy and mental alertness, much like caffeine would. However, I gained weight and could night sleep at night. I opted to go off of it so I didn’t have to take prescription drugs to sleep; and unfortunately I haven’t lost the weight that I put on while on it. And with weight gain comes sore knees and sore backs.
My daughter has just started on Abilify and the consultant suggested 0.1 mg for the first week, doubling each week until the level reaches 2mg. His aim was to gradually introduce it to the body
I forgot to put it in (it is now) but the participants in the study started at .25m/day. It did not say how quickly the dose was ramped up.
Hi Cort, I am one of the participants in the Stanford Abilify study. Dr Bonilla is my treating physician. I started w Stanford last May. Dr Bonilla started me on 0.25mg daily. 2-3 weeks the dose was increased by 0.25mg, unless I was in a “crash”, His max dose for me is 2mg of Abilify daily. It has helped with cognition, dizziness, the excessive lethargy ( I was sleeping 15, 16 hours a day. Some help with the exhaustion, but that is still an issue I fight with. Hope this helps.
Hello Cort,
It has taken me a long time to gather my energy/thoughts, etc., to let you know how much I appreciate the information I have received through Health Rising over the last couple of years. I’m not really sure how long it’s been since discovering HR; but, as with everything else in my life, it’s probably been way longer than I realize.
I’m responding to this particular article because of my frustrating experience with Abilify. My troubles all started in 1971 with a tick, picked up from camping out in the Hill Country of Texas. Flash forward (50 years!!!!!) and many, many seemingly unconnected health issues later; and, here I be with having had, thyroid cancer and Hoshimoto’s thyroiditis, chemically induced hepatitis, five major joint replacements (only left knee being my original equipment), central and peripheral neuropathy, depression, anxiety, SEVERE restless leg syndrome, connective tissue disorder, vein issues, IBS, fibromyalgia, chronic fatigue and on and on it goes. I am truly grateful that I’ve not had cardiac issues.
All of which, as you probably already recognize, a result of Lyme Disease which was finally diagnosed in the late 1990’s through a tissue biopsy from a cyclical/recurring rash appearing on different areas of my body.
Through my relentless efforts to chase all of the above, I recently tried Abilify to address my fatigue and lack of energy and motivation. Amazingly and almost immediately, my outlook and motivation were improved; however, NOTHING, including the hydromorphone and temazepam that I take for pain, RLS and sleep, were working!! That was practically immediately also. Additionally, my appetite became voracious and within a very few days started gaining weight at neckbreak speed. So, I stopped the Abilify and have dropped to a new low with the thought that I will live out my days as this shell of a person that I’ve become over the last many years. I have an appointment with my psychiatrist next week and am guardedly optimistic about trying the low dose Abilify. We’ll see how it goes.
I’ve tried searching doses in the range of what have been described (.1 – .25 mg.); and, I’m not finding dosing documentation for that amount. Is Abilify actually availabe at those doses; or, does it need to be compounded or extrapulated from a higher dose? If you are aware of the availability I would love to know, so that I can advise my doctor. I’m guessing, as with everything else I’ve addressed over the years, this will be foreign to the local M.D.s here in Texas.
Again, I thank you so much for the incredible service you are providing through Health Rising. I never cease to be amazed at the scope and volume of information that you are providing. The hope and help that it garners for those of us who are suffering and searching AND the education for physicians and healthcare providers is invaluable. PLEASE keep up this amazing work!!!
I look forward to any advice, information or suggestions that you might offer.
Cordially,
Patti
That’s very interesting Patti! I wish things could be simpler! Unfortunately they seem to tend to the more complex. I’m afraid I don’t know much about Abilify. It was good to see your positive initial reaction and then rather dismaying to see all the weird side effects. Just as a layman I would think that lowering the dose would be an option if you can manage that.
I have learned, though, that having a fall after a nice boost is a treacherous period indeed. We can get used to where we are – even if its really bad. Popping your head out of the clouds for a time though and then getting forced back into the muck can be doubly stressful and had lead to some bad outcomes.
Please tell your doctor about your experiences – hopefully he/she can help.
I hope you’re feeling better – and thanks for your nice words! 🙂
Cort, hello again! I just wanted to make clear something that I may have presented in a discombobulated way.
The long list of illnesses, (ie, joint replacements, neuropathy, thyroid cancer, hepatitis, etc.) were not a result of the Abilify. All of the physical, neuro, emotional issues that plague me are a result of finally being diagnosed with Lyme Disease some 25 years post tick bite. It wasn’t until a dermatologist determined it was Lyme through a tissue biopsy. And, while I did receive “treatment” at that point, the damage was done; and, it was a bit too little too late.
The Abilify worsened the existing Restless Leg Syndrome AND led to an unending, voracious appetite. Both of these side effects were intolerable, which led to my stopping the Abilify.
As an update though, I have a local compounding pharmacy who is able and willing to extrapolate the low-dose Abilify (.2mg); and, my psychiatrist has begrudgingly agreed to write the script. She is unaware of the study; and, thought the idea was inconceivable. I figure at .2mg, I can half the dose to start; and, see how it goes.
Cort, thank you again for your tireless efforts! I especially appreciated your comments regarding “getting forced back into the muck”! You certainly nailed that. And, as for “simple”? My epitaph: NOTHING IS EVER EASY!!! As the battles wear on, it does become more tiring to climb the mountain.
Thank you for your understanding.
Patti Backus
I too started with 0.25mg and that was plenty. When it stopped working I found that increasing the dosages did nothing for me. It just didn’t work anymore.
Hi, posing my experience several weeks into Abilify.
I felt nothing at 0.5mg. At 1mg it’s been helping a bit. At 1.5mg it was intolerable. I have “textbook” ME brought on by a virus for 1 yr now.
Good at 1mg: At 1mg I feel more alert, less brain fog, and mornings are slightly easier to get my mind and body going, and it seemed (from my 2 week trial) that my average PEM went from 7 days to 2 days. I’ll have to keep an eye on this. I did have to increase my sleep medicine (XYWAV) dosage to get a solid 6.5 – 8 hrs sleep per night.
Bad at 1.5mg: 1.5mg was not good for me, the side effects outweighed the benefits: Bad insomnia, sleep fractured by waking with chills, sweats, nightmares, and vivid dreams, worsening tremors/shivers, even shaking lips.
My sleep medicine stopped working at 1.5mg Abilify, and I started waking every 1.5 – 2 hrs throughout the night. I was only getting 5.5 hrs of sleep total on the highest possible dose of my sleep medicine. Worse, the 1.5mg Abilify alone or in combo with increased sleep medicine triggered a migraine. And I felt “crazy,” like so awake I can’t close eyes, but shaking and sweating from exertion, and I couldn’t rest off my PEM because the Abilify makes me so wide awake. It was a horrible feeling.
On 1.5mg I am more alert in the morning and overall, but the horrible side effects make 1.5mg intolerable for me.
In summary: I’ll be sticking with 1mg here. It seems to help shorten my PEM and lessens my brain fog, which is really great.
I have been taking Abilify daily since July 2020, at 0.5 mg daily. I’ve had ME/CFS for four years and consider myself in the Moderate category. I believe Abilify has improved my health dramatically. I am significantly less sensitive to sound and light. I have not experienced any side effects. I could not be more enthusiastic about Abilify
Hi Ann,
Care to share your abilify experience with the Facebook group, “Abilify for ME/CFS”?
I wonder if Pramipexole – a D2 agonist – might work the same way and without the potential side effects from less complex pharmacology?
Gibs, My now-retired psychopharmacologist (since roughly 12 years) and I experimaented with Pramipaxole among other dopamine boosting or stabilizing drugs. These even include the flu drub Amantadine. The problem is that, except for the Abilify success stories, the effect tends to fade. I guess I had somewhat positive reaction to Pramipexole as I took it for several years, but not enough to want it back.
I would like people to refer back to Betty I Mekdeci comments on Lyme,previous topic. To find any treatment you have to first find the cause of the disease. As she said a lot of people would have had their immune system compromised by toxic chemicals which we come into contact in daily living, which are in not only the food chain but in other products which we are not aware of. Garden sprays, oven cleaners, possibly some women’s make up and other products used and absorbed through the skin, these days we are surrounded by chemicals harmful to our immune system. When the immune system weakens enough,either from constant stress or viral infection these viruses that nearly everyone carries in latent form reactivate. The immune system is the reason some recover quickly after viral infection as they quickly defeat the infection and also keep the HHV4 and HHV6 in latency. This is the reason some people take longer to recover and some do not. Medications such as Prednisone and Symbicort interfere with the immune system and possibly other medications also affect the immune system. They don’t want to know because it’s Big business and Big Phama ruining our immune system and when sufficiently weakened the viruses reactivate. Lyme disease is also CFS after the immune system being compromised by the tick bite. Long COVID is also CFS the Herpes virus reactivating during Covid infection. A REALLY GOOD READ: The Atlantic. Unlocking the Mysteries of Long COVID: Story by Meghan O’Rourke. This article was published online on March 8th 2021.
I have both, ME/CFS and Fibromyalgia. After decades of trying numerous medications and supplements, I finally noticed a positive change with Abilify.
The initial doses were quite low – 0.25 ml, 0.5 ml, 0.75 ml, and so on. It was at 2 ml that I noticed a change – the pain was reduced and so was the fatigue. I am able to walk 20 minutes without PEM hitting me a few hours later. Fatigue is down 30-40%. I wake up without pain. None of this was possible before.
It has been 2 months since I am at the 2ml dose. I won’t say I am cured, but it has made a positive impact on my life.
Hi Priya,
Care to share your abilify experience with the Facebook group, “Abilify for ME/CFS”?
How often did you up your dose. So pleased for you that this has helped.
Many of us are extremely sensitive to even pediatric doses of medicines.
I take a lower than pediatric dose of Depakote, not for bipolar, but for the wired but tired, jumping out of my skin feeling. I noticed that migraine meds calmed my body and nervous system.
Also, when I was at my sickest, it felt like I was in a catatonic state. I now realize it was abulia.
If you have not already tried them, you may want to try highly absorbable magnesium (e.g. ReMag) and potassium supplements. Once I found the correct amounts of these minerals, the “burning, crawly” feeling in my legs disappeared completely
I am one of Dr. Bonilla’s patients and may be part of the numbers they reported. To me low dose Abilify was great, I felt great without side effects, but like most other drugs it ceased to work after about 6 months. I actually had a longer run and equally good response on Celebrex. That has also stopped doing it’s magic after 8 months and now I’m throwing some Adderall on top of it to function. I’d like to return to Abilify but it’s been about a year since I stopped taking it and I tried restarting a couple of times but it did not have the impact on me it once had. I understand some of comments here about getting to the root of what’s causing the ailments, but sometimes we don’t have the luxury of stopping our lives – bills need to be paid, kids fed, etc. Yes, I so want somebody to tell me want is physically wrong with me… even if it was something very bad, but give me a diagnosis! However, it’s been 6+ years since this hit me and I’ve given up on finding the root cause of the problem and just want to function. Good luck to all of you out there.
Hi Mark,
Care to share your abilify experience with the Facebook group, “Abilify for ME/CFS”?
Hi Mark – I also had a great response to Celebrex for about 8 months.
I tried Abilify twice unsuccessfully – once at 2mg, and then again titrating from 0.25mg up to 2mg – before a third, successful trial at 2mg. I have no idea why it didn’t help me the first two times.
When it did work, it was like a miracle drug for about 3 months, and then gradually went downhill over the next several months. It caused me to be obsessed with food and I gained almost 15% of my body weight in that short time. Since I am back to nearly bedbound, and have only the weight gain to show for it, I’m discontinuing it. But those few months that it worked were like heaven. I still needed dexdrine to clear the brain fog, but it felt like it was working properly for the first time in a long time, and I was able to tolerate much more activity without experiencing PEM or crashing, and I required less sleep as well, doing well on 8-9 hours sleep instead of the 10-11 that I’m back to now.
@ Dennis, I also agree that the Atlantic article is VERY worth reading!
Here is the direct link;
https://www.theatlantic.com/magazine/archive/2021/04/unlocking-the-mysteries-of-long-covid/618076/
Now I was in Bonilla’s study as well and I wrote some comments about it in a recent blog comment here. To summarize, I was one of the people who, the higher the (tiny) dose the more confused and forgetful I got. I definitely didn’t notice an uptick in energy or other strong improvement. The information gathering left something to be desired as it was short and relied on immediate response at the end of an appointment. Better to have people chart their experiences so think the results MAY be unreliable.
Presently I’m trying NAC again along with Shilajit and D-Ribose. Think I’ll add yogic breathing exercises after reading that article!
As an interesting addition to Covid treatment, and maybe applicable to ME/CFS, is a repurposed drug for obsessive-compulsive disorder. Evidently if our issues are immune based, i.e. neuroinflammation, then fluvoxamine might be another place to look. There was a piece on it during a recent 20/20 TV show.
Hi Nancy,
Care to share your abilify experience with the Facebook group, “Abilify for ME/CFS”?
@Nat,
Thanks for inviting me to the Facebook group, however I don’t have much more to share except what I have posted here (and in the comments of an earlier Health Rising comment section). Also I tend to avoid Facebook…
Good luck with your discussion group!
For general ratings about Abilify you can go to AskaPatient.com I took .50 mg for 1 month because the generic 2 mg was unable to be cut down more than .25 mg without having fragments. I gained weight, felt sleepless and lethargic. In some way that’s hard to describe, I was less depressed – I felt happier despite that I got nothing accomplished. I could not stop eating and still can’t 3 weeks afterwards, and I gained a few lbs. Just my 2 cents. I would like to try the brand name in liquid. I took the Genesight test and it shows that I metabolize it slowly.
Hi Wendy,
Care to share your abilify experience with the Facebook group, “Abilify for ME/CFS”?
Can you explain what you mean by fragments? A family member is on the generic version for CFS. I’m the one doing all the researching…thanks! The dosage is less than 2 mg so now I’m concerned if there is a problem with the generic at this dosage.
I am a new patient to the Stanford Clinic. I have developed significant CFS after CV-19 infection a year ago in March. I take .25mg daily. I noticed a significant improvement in my brain fog, light and sound sensitivity, ability to focus, word recall and capacity for conversation. I was getting PEM from cognitive activities and I would say it is 75% better. I have also noticed a 25% increase in my physical stamina before a crash. No side effects that I can tell. Been on it about 6 weeks. Its been a very positive experience. I am only 46, and was feeling like I had early onset dementia, but no more.
Hi Rebecca,
Care to share your abilify experience with the Facebook group, “Abilify for ME/CFS”?
I am one if the patients that participated in the Abilify study. Here is my story.
I am 37 years old and I have lived with ME for over 13 years. My symptoms came on gradually and I became very ill over several years. The first few years I struggled with fatigue and orthostatic intolerance but was still functional. I pushed through and made myself worse to the point that I was severe for about 4 years, housebound/bedbound with debilitating symptoms and countless daily seizures. I could not tolerate any light or sound. I would experience extreme sensory overload with minimal stimuli and my cognitive function and memory were greatly diminished. My muscles were so weak that simply opening a water bottle would cause me to have a seizure. Even the smallest mental or physical exertion caused me to have seizures resembling dystonic storms. I couldn’t tolerate riding in a car, listening to music, reading or even scrolling through social media or checking my email. I needed ice packs behind my neck all the time, blackout curtains, eye masks, ear plugs/noise blocking headphones, etc. My inflammatory markers were through the roof and I couldn’t stand for more than a few minutes without nearly passing out. I struggled to walk and would my body would literally shutdown with the slightest exertion. I needed a wheelchair to leave my house. I suffered with paralysis and muscle spasms. I would completely lose the ability to speak or move. I would sleep for 18-20 hours a day and never felt rested or refreshed. I constantly felt hungover and rarely left the house. Any minor exertion, be it physical, mental or emotional caused me to be bedridden for days, weeks or even months after with PEM. I needed help with everything except basic hygiene. I was hospitalized twice with cytokine storms, and thankfully survived, as they can be fatal.
Like many ME patients I saw countless doctors. I was dismissed and ignored for 9 years before I became a patient at the Stanford ME/CFS Clinic in 2016. I finally received an ME diagnosis and began treatment, but saw little improvement for 2 years.
In 2018 I began seeing Dr. Bonilla and he prescribed low dose Abilify. I started out at 1mg. I noticed improvement within 2 weeks. After about a month I increased to 1.5mg. After another month I went up to 2 mg but that was too much for me as it caused irritability and anger. I went back down to 1.5mg and that seems to work best for me.
Thankfully, it has been life-changing for me. While I am nowhere near what most people consider healthy, my quality of life has greatly improved. I am now considered moderate. I am no longer housebound/bedbound. I no longer need a wheelchair. My sensory sensitivities are much improved and my seizures have reduced in severity and frequency. I rarely have PEM. My cognitive function is almost back to normal and I can even drive again! I no longer sleep the day away (everyday) and I can listen to music and read again. I also take Midodrine for POTS and I can stand for longer periods of time without passing out or needing to lie down.
Abilify has given me the ability to participate in life again. I am at about 30-50% functionality, depending on the day. Before taking Abilify I was at 10-20%.
Wow that is an incredible story. So happy for you that Abilify has had such a positive effect on you
Interesting information about the drug and its effect on ME/CFS.
But please: Autism is not a disease! (“but is used off-label for depression, Parkinson’s disease, autism and many other diseases”)
why don’t scientists immediately do a double-blind study. They know that a study otherwise has less value. I am not sanitizing that. Do it right. Ans isn’t it dangerous to stimulate dopmanine.
I am not understand. And…
Because it’s a retrospective study, and because double-blinded trials are very expensive and time consuming. Look up Ron Davis’ latest update on this – they are planning a double-blind study, but they need funding.
It is yet another great results for us! Thank you, Cort. Just wondering….. Naltrexone increases the active dopamine level by blocking the uptake receptors. So the amount of dopamine one would like to increase is determined by the dosage one takes. Does Abilify actually adjust the dopamine level flexibly? Or does a dosage of Abilify also determine the level of dopamine one would like? Of course there are differences in terms of chemically between Naltrexone and Abilify. I was however wondering how the dopamine level is managed by these two different meds. If Abilify adjusts the level of dopamine rather than mere dosage, then it implies more flexibility, depending on your dopamine level, which …. great!
Reading about Abilify has me intrigued and would like to consider asking for it. For 4 years I have taken LDN and it helps with sleep and overall wellbeing for my CFS of 30 years. Would taking another dopamine- impacting drug be OK or would it adversely impact me?
Unfortunately for me Abilify and all the meds in that class cause my muscles to get very stiff and rigid and extremely painful. I believe it’s the 5HT1A agonism, buspirone also does the same thing. I’m in so much pain it hurts to even walk.
Abilify’s weight gain commonly leads to serious life-threatening diseases such as diabetes and kidney disease.
Once again the use of Abilify is for neuroinflammation , with all research pointing to not only neuroinflammation but systemic body inflammation we must be looking at what could be causing such widespread inflammation. For me that would be inflammation of the endothelial cells which line the inside wall of all blood vessels. They express a lot of ACE 2 receptors which viruses use to enter our cells. This inflammation only needs to be mild to cause a multitude of symptoms throughout the body not only affecting the brain but all other organs and glands throughout the body. The affect on the lungs and heart have serious implications on blood flow through out the cardiovascular system and having constant inflammation has a major affect on cortisol levels, which then leads to low blood pressure as cortisol helps maintain blood pressure. This inflammation is not seen in normal ESR or CRP tests. With low blood pressure a Renin- Angiotensin- Aldosterone process is initiated with the result being constriction of blood vessels adding to already problems with blood flow. Unfortunately a lot of the pathology tests have margins far too wide and most people are told everything is ok. One test for inflammation of the blood vessels is ANCA test looking for Myeloperoxidase antibodies for which my results come back positive with higher than normal Myeloperoxidase antibodies , but some may not be picked up as some of these tests are not accurate, as with the test for EBV serology. Even when coming back positive EBV- IgM which means the virus is active I was told the test was unreliable by Infectious Diseases Specialists, until I had a EBV- PCR – DNA test which returned DETECTED in low copies. Yes we are all looking for something to make life more bearable but we must not stop looking and pushing for the cause of this inflammation. I do believe mine is a result of EBV reactivation as my IgM and IgA Immunoglobulins are high. Some will want us to just accept our disease and look for relief with medications as with so many other unexplained diseases like autoimmune disease and many other diseases which when researched say could be caused by viruses. There is always a possibility that the immune system is over reacting or the virus is evading detection by molecular mimicry and the immune system is attacking self cells. But finding the cause must be paramount in all research even at the detrimental effect of Big Phama if a cause and treatment of all these diseases is found..
I believe my CFS is also from EBV but if it is, how would they treat it at thisnppint, had ot over 4 years ago?
I am still convinced that the combination of HHV-6A and toxic exposures can start and perpetuate CFS. With that in mind, I take two of the immune stimulants recommended on the HHV-6 Foundation website: Immunopro and Nexavir. Immunopro is a whey-based supplement that enhances glutathione and immune function. Nexavir is the newer version of Kutapressin, a treatment made from pig liver. Nexavir can be purchased in cream form without a RX or in injectable form with a RX.
Yeah, that is the problem with drugs: they stop working after a while. If there is another drug, you could rotate between the two. I’m resorting to natural dopamine enhancer that I call “novelty effect”, which lets me do twice as much without triggering PEM.
It seems that evidences have been accumulating that dopamine plays a role in CFS. I’m of opinion though, that we don’t lack dopamine. We are still full of drives constantly pushing and then crashing. But additional dopamine could be playing the role of fire retardant on the brain. And if Ability proves to be effective, it could eventually could point to solution.
This is fascinating as I have been thinking a lot about dopamine recently without being aware of research. I started suffering from insomnia in my early thirties and Zopiclone worked for many years. But the problem was getting worse. I tried various other options including Quetiapine, which is also an anti-psychotic. I found that in small doses coupled with Zopiclone, it was really effective and would give me more restorative sleep so the body could recuperate more easily and get me through the day. The problem I’ve been facing recently is that I clearly suffer from Restless Legs Syndrome aka Willis-Ekbom disease, which appears to affect many of us with fibromyalgia.
Turns out that all those off label medications they offered me for insomnia, were aggravating the RLS, causing me all sorts of itches and waking up often. Presumably Quetiapine and all the antihistamines I don’t tolerate lower dopamine levels and that would cause RLS… so is Abilify the same or different in some respect? I naturally wonder if the agitation described above is really RLS? Despite the symptoms, Quetiapine seems to be the only thing that can keep me going and it’s a rather dire prospect as I do have to keep upping the dosage which then causes more agitation during sleep. I wake up a lot but I’m able to drift back to sleep, and just sleep longer while getting more REM sleep which I seem to be lacking. I just cannot get restorative sleep on non-benzos and benzos alone. It’s a really strange paradox. However, I desperately need help and will suggest this alternative to my doctor.
If you have not already tried them, you may want to try highly absorbable magnesium (e.g. ReMag) and potassium supplements. Once I found the correct amounts of these minerals, the “burning, crawly” feeling in my legs disappeared completely
There are other ways to balance out dopamine. I take a tincture of Korean Red Ginseng, every morning. Not only will it help increase cognitive function and help with brain fog, but it can help balance out dopamine and give an additional boost of a little more energy with a better sense of wellbeing.
I also use another brain supplement that also helps me tremendously with brain function and balancing of hormones called Clari T. It has properties to help with blood flow and transmission signals. And helps prevent reperfusion issues. Has herbals in it that both people with ME, FMS and POTS have found helpful.
These two things are must keeps for me. And have been very helpful.
Hi Issie, I am new to ME/CFS. Do you know of any websites or support groups that have an interest in a more holistic approach with ME/CFS?
Hello there – As you might have already figured out, managing ME/CFS is troublesome because it’s a complex heterogeneous disease we don’t have a complete picture of. As a result, what works works, and there isn’t really a huge distinction between managing the disease via pharmaceutical intervention vs. holistic approaches.
For example, one of the things that a lot – a LOT of people – really swear works for them is magnesium supplements. (I mean, me too, but not everyone.) I kept a tracking journal for six months and eventually managed to figure out that I felt better after eating cheese, which I later figured out was because cheese has glutathione in it. Even Readers Digest has a list of natural management tricks!
I have not personally checked out stuffthatworks dot com but they claim to be trying to crowdsource disease solutions. I guess you could check those guys out.
There is a content aggregator and alternative medicine publisher called VeryWellHealth that has a couple articles on ME-CFS. The one I read lists mostly treatments I happen to believe are sound based on literature review.
There is a UK organization called the ME Association, but last time I checked they were still making recommendations based on a clinical trial that has since been withdrawn, so please approach with skepticism.
There’s a dude named Gundy who has some supplements he swears by; I have not had the energy to check them out yet.
You might also read Sara Myhill’s book on CFS. Her approach is very holistic. Diet, supplements, etc. It helped me. You might also read Dr.Terry Wahls book, The Wahls protocol. It’s written for those with autoimmune disorders and she says that she cured her Multiple Sclerosis with the protocol she came up with. The diet portion is exactly what Sara Myhill recommends, but it is much clearer, so that’s what I did in terms of diet. It has been one of the pillars of my recovery.
Does anyone know if Abilify helps neuropathy? I have CFS and it led to SFPN. The pain and burning is my biggest problem now, especially at night.
I felt great for a few days, but this wore off after a few weeks. For the rest of the time, my physical capacity seemed a little lower than without Abilify. More importantly, my attitude become consistently pessimistic, which is unusual for me, and I was sleepier. I experimented with different doses and timing, but nothing worked. The only positive effect that lasted for a while was the elimination of my periodic limb movement disorder (restless legs), but this eventually wore off, too. I felt a little better after I quit.
I’ve had ME/CFS since at least 1989. I have been moderate for most of the time. I developed depression recently and was give an antidepressant and then later Abilify as an adjunct medicine. I went from barely able to walk a block to walking 9 miles a day. Then the adverse effects of the Abilify left me unable to think clearly, robbed me of the motivation to do even basic tasks so I stopped. I’d love to try the low dose treatment. During my time on Abilify I had a complete cessation of chronic migraines as well!
I’m curious. What was the abilify dosage you were taking?
Reading about Abilify has me intrigued and would like to consider asking for it. For 4 years I have taken LDN,( which increases endorphins and blocks cytokine production temporarily) and it helps with sleep and overall wellbeing for my CFS of 30 years. Would taking another dopamine/endorphin- impacting drug be OK or would it adversely impact me?
Hi Gidget,
What do you use for brainfog and tinnitus?
after talking alot of medication our doctor ask us,to start on Tree of life Health Clinic Parkinson’s Disease Herbal mixture, 1 month into treatment she improved dramatically. At the end of the full treatment course, the disease is totally under control. No case of dementia, hallucination, weakness, muscle pain or tremors. all thanks to Tree of Life Clinic, Visit Tree of life Health Clinic website ww w.treeoflifeherbalclinic. com She is strong again and able to go about daily activities
Interesting. It has dopa bean (Mucuna Pruriens) in it.
I’ve have been taking Abilify for years for intrusive thoughts/depression. 2 mg. and then 5 mg. I have had fibromyalgia for years too. I don’t feel like I am getting any off- the-shelf fibro pain relief from taking the Abilify. I still have the excruciating vice-like pain and feel like I’ve been hit with a baseball bat. Maybe my pain would be worse if I wasn’t taking the Abilify, but it is not a drug to stop taking if one needs it for intrusive thoughts in order to find out if my fibro pain, in fact, would worsen.
Have you tried LDN for the pain?
I certainly respect Dr. Ron Davis and his work on the metabolic trap/cell danger response, but am a bit disappointed in the Abilify angle. It’s now been 7 years since Dr. Naviaux published the encouraging study about the dauer state, and the fact that the oxygen/glucose is not powering our cells. It was SO encouraging to have a study actually provide so much logic and hope. But now, 7 years later, we patients are still bereft of health, with little hope.
If Abilify truly helps those with post-exertional malaise, great! Been waiting 3 decades. However, if this is just another study that dies on the vine, the fact that an anti-psychotic drug is used will not help our families and friends understand that our illness is not psychological. We can explain that low vs. high dosage levels make a difference, but we will again be considered psychotic to our ‘support’ group.
I am of the opinion that ME/CFS is a 2-stage problem. I would say the first stage involves PEM & the dauer state shutdown, both unique to ME/CFS. The second stage is the Central Sensitivity Syndrome symptoms we share with many other illnesses, like West Nile Virus, PTSD, and other forms of brain inflammation. I further suggest that the oxygen/glucose misfire is keeping our systems exhausted, and have to turn to the backup system, adrenaline. Using adrenaline for day to day energy means we don’t have it when we need it. If we can solve the cell energy, our systems wouldn’t need to be constantly alert, PEM would go away, and adrenaline would be used as intended. Correct the first part and the rest of our symptoms go away.
Thanks for the opportunity to vent.
I appreciate what you said in your post. In the meantime, who cares what other people think. If you have to lie to them to continue to get their support in your recovery process, I say why not. If they’re not going to understand, that’s their problem.
If ones dopamine and serotonin levels are high 202 & 117, does aripiprazole .1mg daily increase dopamine & serotonin levels?
Peripheral / serum serotonin and dopamine levels do not correlate witj CNS levels
Thank you for the article. Ive had ME/CFS since post mono as a teen now 54. I’ve been on Abilify for 2 years now. 4.5mg. It has been a game changer for me. I’m on both LDN and Abilify. I started on LDN then several months later added the Abilify. I attribute the loss of chronic pain mostly to the LDN and an increase in energy, stamina and clear headedness to the Abilify. I went from sometimes needing a walker/wheelchair to walking 2-4 miles a day and generally being able to enjoy life events and volunteer etc. only draw backs for me are increased appetite and 5-10lb weight gain and exacerbated anxiety which I am now on Lexapro for.
Wow. Congratulations Dian.
Hi, posing my experience several weeks into Abilify.
I felt nothing at 0.5mg. At 1mg it’s been helping a bit. At 1.5mg it was intolerable. I have “textbook” ME brought on by a virus for 1 yr now.
Good at 1mg: At 1mg I feel more alert, less brain fog, and mornings are slightly easier to get my mind and body going, and it seemed (from my 2 week trial) that my average PEM went from 7 days to 2 days. I’ll have to keep an eye on this. I did have to increase my sleep medicine (XYWAV) dosage to get a solid 6.5 – 8 hrs sleep per night.
Bad at 1.5mg: 1.5mg was not good for me, the side effects outweighed the benefits: Bad insomnia, sleep fractured by waking with chills, sweats, nightmares, and vivid dreams, worsening tremors/shivers, even shaking lips.
My sleep medicine stopped working at 1.5mg Abilify, and I started waking every 1.5 – 2 hrs throughout the night. I was only getting 5.5 hrs of sleep total on the highest possible dose of my sleep medicine. Worse, the 1.5mg Abilify alone or in combo with increased sleep medicine triggered a migraine. And I felt “crazy,” like so awake I can’t close eyes, but shaking and sweating from exertion, and I couldn’t rest off my PEM because the Abilify makes me so wide awake. It was a horrible feeling.
On 1.5mg I am more alert in the morning and overall, but the horrible side effects make 1.5mg intolerable for me.
In summary: I’ll be sticking with 1mg here. It seems to help shorten my PEM and lessens my brain fog, which is really great.
(Sorry, I think my last post incorrectly went as a reply)
Abilify is available as syrup, 1mg/1ml. Pills are not to be cut in pieces because you will not get the right amount.
My neurologist prescribed Abilify first 0,5 mg/morning. That didn’t help much. And i got a very bad insomnia. I could not sleep at all for several nights. I became very restless during the days. So i stopped it.
I started again several month ago with 1mg/day in the mornings and i feel MUCH better then all the years before. Pain is bearable without painkillers, I have more energy, fewer and milder crashes, been able to go out for a walk since many years.
The difference is so remarkable that my carers and nurses tell me how well I am now – compared to the past years (bedridden 20 hours a day, very little energy e.g. for brushing teeth or showering, frequent crashes lasting 3 weeks).
I have gained weight and my appetite is huge. This is not ideal. I have to go on a diet now.
But Abilify really should only be prescribed by an experienced neurologist / psychiatrist. The side effects can be very dangerous even with LowDose – up to sudden cardiac death! And taken as the last chance, i would like to say.
Can be purchased as syrup 1 ml=1mg.
With a small syringe starting with 0,2 mg is quite easy.
This is the dose my physician has starting me know, as half life is 3 days steady state will be higher and reached only after ca. 10 days.
Ill report later on experience.
Thank you all for your contributions
How much did the syrup cost? The compounded script I filled cost more than I can really afford.
Thanks
Has anyone tried going from duloxitine to abilify? I’m considering asking my doc for a script.
I tried Abilify for 3 months starting with .25 and gradually increasing dosage to 2.0. Unfortunately, it did not help at all with ME/CFS.
zum Schlafen kann man z.B. Quetiapin probieren.
Hey, Cort. It’s now been just over 2 years since this was published, and I have not seen any other data on this (nor can Google or PubMed find any) You and I both know how many treatments touted as beneficial over the last 3 decades have not panned out when subject to more study, and it seems that by now other larger clinics must have some data on this. Are you aware of any other data?
Although you mentioned interest in dopamine agonists going back to 2014, you probably recall Andrew Holman’s studies on pramipexole and ropinirole in fibromyalgia almost a decade earlier.
Keep up the great work!
Hello,
What about if you have bipolar disorder and ME? I’m trying Abilify under a psyquiatric prescription and I’m having symptoms of mania.
I”ll be seeing my psyquiatrist in two weeks but it seems that I’ll probably have to stop.
Any suggestions?
Correction needed- Abilify is on label for adjunct to antidepressants and for irritability with autism (psychiatric ARNP here). I just learned of its use for ME and plan to ask my primary care provider about it.
A quick reaction to the first paragraph: Autism is not a disease.