List of ME/CFS Recovery and Improvement Stories

[Rachel Straub]

@Hip, feel free to add my story. In 2013, I became severely disabled (predominantly bedbound) & was diagnosed with ME/CFS. In Aug 2017, I entered remission & returned to graduate school. It took ~4 yrs of treatment to move from severe to remission. All treatments targeted possible infections, which included Mycoplasma pneumonia, Candida, Epstein Barr, Lyme disease, etc. Full details on this can be found in my published case report.

By Nov 2017, I relapsed & resumed treatment. I was able to remain in graduate school with overwhelming accommodations & graduate with my PhD Aug 2022. From Nov 2017 to Dec 2022, I oscillated between mild to severe ME/CFS. As of Dec 2022, I am back into remission & no longer meet the criteria for ME/CFS. From Nov 2017 to Dec 2022, I was treated for Lyme disease, Bartonella, Candida, and parasites. I attribute my current remission to full restoration of my GI tract, which took 2 years & 9 months of treatments that primarily targeted Candida. I posted details regarding my 2nd remission here.

For me personally, to overcome ME/CFS has required treatment that in many ways has been akin to chemotherapy, as everything has made me sicker & more severe. There has clearly been a switch, but the journey to get here has been exceedingly painful with no instant gratification.

My current list of medications is below. This was much more extensive when I was under treatment.

Prescriptions:
1. Levothyroxine

Herbs/Supplements:
1. Iodine (kelp)
2. Multi-vitamin
3. Fish oil
4. Vitamin D
5. Mangifera indica
6. CBD oil
7. Pycnogenol
8. Curcumin
9. Scutellaria Baicalensis
10. Salvia Miltiorrhiza
11. Ubiquinol
12. PQQ
13. L-Glutathione
14. NADH with D-Ribose
15. Drynaria
16. Calcium
17. Collagen
18. Vitamin C
19. Colostrum
20. Probiotics
21. Ca/Mg Butyrate
22. Lactoferrin
23. Saccharomyces Boulardii

 

[Hip]

@Hip, feel free to add my story. In 2013, I became severely disabled (predominantly bedbound) & was diagnosed with ME/CFS. In Aug 2017, I entered remission & returned to graduate school. It took ~4 yrs of treatment to move from severe to remission.

Thanks very much for posting your recovery story. It's not often that a patient's recovery is reported in a medical journal!

I will add your story next time I update this thread. I am too tired at the moment to read the paper in full, but I notice from the paper that you had undiagnosed hypothyroid disorder for many years, so your entire body might have been weakened by this. So probably not you average case of ME/CFS. Also long term sinusitis, which can cause similar symptoms to ME/CFS.

 

[Rachel Straub]

Thanks very much for posting your recovery story. It's not often that a patient's recovery is reported in a medical journal?

I will add your story next time I update this thread. I am too tired at the moment to read the paper in full, but I notice from the paper that you had undiagnosed hypothyroid disorder for many years, so your entire body might have been weakened by this. So probably not you average case of ME/CFS. Also long term sinusitis, which can cause similar symptoms to ME/CFS.

As someone with a history of publishing research in peer-reviewed journals, I felt an obligation to write up my story, in the hope that someone may find it useful. My case report discusses that my long-term history of medical problems that went undiagnosed/mistreated for decades likely contributed to my development of severe ME/CFS. This included chronic sinusitis (which disappeared after I figured out I had a dairy intolerance ~20 yrs later), but the damage of long-term antibiotics/allergy shots was likely already done. In addition, I had severe hypothyroidism that likely contributed to further immune dysfunction that went untreated for years and led to misdiagnoses of amenorrhea, congenital neutropenia, and psychogenic polydipsia. Then there were extensive tick bites. Before my ME/CFS saga, I had seen 20+ physicians, so multiple events/mistreatments/misdiagnoses over decades likely contributed to my official "health crash" in 2013.

Regardless of my medical history prior to ME/CFS, I became severely disabled and was diagnosed with ME/CFS fairly quickly in 2013. Most of my past issues were resolved at this point (including chronic sinusitis). I was fortunate to find a MD/PhD with the skillset to treat possible underlying causes. This partnership with a physician who finally had a "brain" (as I felt all doctors prior to this were on a mission to kill me) has played a critical role in my recovery. I will write up a follow-up case report in time (as the published report stops in 2017), but I thought I should share some of the more recent details now in the event someone finds it helpful. My first remission in 2017 didn't last, but I remain hopeful this second remission will.

 

[Hip]

As someone with a history of publishing research in peer-reviewed journals, I felt an obligation to write up my story, in the hope that someone may find it useful. My case report discusses that my long-term history of medical problems that went undiagnosed/mistreated for decades likely contributed to my development of severe ME/CFS.

That's very impressive that you published your recovery circumstances in a medical journal!

 

[Dude]

I have good news today. LDA or low dose abilify has improved my condition immensely. After trying countless supplements and medications. Just to name a few: (Rapamycin, Vortioxetine, Fluoxetine, Escitalopram, Naltrexone, Metformin, ETH,...) I finally found something that improved my condition by 20-30% within a few days. I even started working 19h/Week again. Had my first full week. So far so good. Before that it was only a few hours sporadicly and i got really fast fatigue and flu like symptoms when sitting behind a desk. But now with home office (Software Developer), this is fortunately not a problem anymore. I currently take 2.5mg every other day. The pills are very small (10mg) and I have problems to dose them well. But right now I'm very happy with the result. It's the first drug that really helped. I have improvements in almost all areas (brainfog, pain, fatigue). Unfortunately, what is still modest is sleep, but at least waking up is more relaxed now. Hope this holds up.

 

[fingers2022]

I have good news today. LDA or low dose abilify has improved my condition immensely. After trying countless supplements and medications. Just to name a few: (Rapamycin, Vortioxetine, Fluoxetine, Escitalopram, Naltrexone, Metformin, ETH,...) I finally found something that improved my condition by 20-30% within a few days. I even started working 19h/Week again. Had my first full week. So far so good. Before that it was only a few hours sporadicly and i got really fast fatigue and flu like symptoms when sitting behind a desk. But now with home office (Software Developer), this is fortunately not a problem anymore. I currently take 2.5mg every other day. The pills are very small (10mg) and I have problems to dose them well. But right now I'm very happy with the result. It's the first drug that really helped. I have improvements in almost all areas (brainfog, pain, fatigue). Unfortunately, what is still modest is sleep, but at least waking up is more relaxed now. Hope this holds up.

Have you tried ART?

 

[hapl808]

I have good news today. LDA or low dose abilify has improved my condition immensely. After trying countless supplements and medications. Just to name a few: (Rapamycin, Vortioxetine, Fluoxetine, Escitalopram, Naltrexone, Metformin, ETH,...) I finally found something that improved my condition by 20-30% within a few days. I even started working 19h/Week again. Had my first full week. So far so good. Before that it was only a few hours sporadicly and i got really fast fatigue and flu like symptoms when sitting behind a desk. But now with home office (Software Developer), this is fortunately not a problem anymore. I currently take 2.5mg every other day. The pills are very small (10mg) and I have problems to dose them well. But right now I'm very happy with the result. It's the first drug that really helped. I have improvements in almost all areas (brainfog, pain, fatigue). Unfortunately, what is still modest is sleep, but at least waking up is more relaxed now. Hope this holds up.

Very interesting - one of the next things on my list. Did you titrate up the dose or start there? Very curious to hear updates as you go.

 

[Hip]

I have good news today. LDA or low dose abilify has improved my condition immensely.

I hope this improvement holds out for you, as many responders to Abilify get substantial improvements, only to find that those improvements vanish after a few months. We have unfortunately seen this quite often on the Abilify threads of this forum.

 

[Dude]

Have you tried ART?

I only tried supplements for ART like Cistus or Olive Oil Extrakt (Supplements), but had no luck there. I still have Maraviroc and Sofusbuvir Laying around. One day, i was so desperate i just ordered all medications that someone mentioned helped with CFS. I'm now waiting for the conference on May 11th in the Charite. I am very positive that there will be more information about what the causes could be.

I hope this improvement holds out for you, as many responders to Abilify get substantial improvements, only to find that those improvements vanish after a few months. We have unfortunately seen this quite often on the Abilify threads of this forum.

Yes, the fear is real. I've also read that some people's effects wear off over time. I will definitely update if my condition continues to improve or worsen.

Did you titrate up the dose or start there?

I did start with the "max" dose of 2,5mg. In my case, i didnt had any side effects.

 

[mrmichaelfreedmen]

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-021-02721-9

 

[Wishful]

The study about aripriprazole is interesting, but definitely needs further study before getting too excited about it. The claimed benefits could just be the result of how the questionnaires were written, or the patients reported benefits from any treatment that sounded promising. The potential side effects sound unpleasant too, especially if it's in trade for only a slight reduction in ME symptoms. Extra insomnia and drooling? Nasty withdrawal symptoms too?

 

[hapl808]

The study about aripriprazole is interesting, but definitely needs further study before getting too excited about it. The claimed benefits could just be the result of how the questionnaires were written, or the patients reported benefits from any treatment that sounded promising. The potential side effects sound unpleasant too, especially if it's in trade for only a slight reduction in ME symptoms. Extra insomnia and drooling? Nasty withdrawal symptoms too?

I do worry about withdrawal. All these studies that downplay side effects concern me, because historically you see the same from SSRI to Valium to Oxycontin to Subutex and so forth. Initially all the studies talk about how well tolerated and no withdrawal. Then you talk to patients and start hearing the horror stories.

Anything that modifies neurotransmitter balance makes me wonder if it can do so for the long term. And if it can do it in beneficial ways, can it do it in harmful ways. I often suffer from rebound effects with everything from CBD to Benadryl to Valium, so that's another concern.

 

[Wishful]

Then you talk to patients and start hearing the horror stories.

Yes, I had a neighbour who was prescribed antidepressants, with no warnings about side effects or withdrawal effects, and she ended up with fairly serious withdrawal symptoms. In my search for help with what I didn't know was ME, I was handed free samples of antidepressants, with no warnings of side effects or withdrawal problems. The system is weighed way too heavily in favour of the pharmaceutical companies.

I'd be quite leery about trying aripiprazole, especially if it only offers slight reduction in brainfog or other ME symptoms.

 

[hopefulalligator]

You can add my improvement story if you'd like.

I went from housebound and mostly bedbound to mild/only getting PEM from cardio exercise in 2 months using Mestinon. I take 45mg 3x/day and have been on it for 4-5 months with lasting improvements so far. I'm able to do some strength training in physical therapy now and work part time from home.

Can you share what time of day you take each dose?

 

[hmnr asg]

The study about aripriprazole is interesting, but definitely needs further study before getting too excited about it. The claimed benefits could just be the result of how the questionnaires were written, or the patients reported benefits from any treatment that sounded promising. The potential side effects sound unpleasant too, especially if it's in trade for only a slight reduction in ME symptoms. Extra insomnia and drooling? Nasty withdrawal symptoms too?

I have talked to many people now with CFS who improved on LDA (either on the CFS subreddit, on here or on a dedicated Facebook group for the use of LDA in CFS) that I know it's one of the few things that can substantially and fundamentally improve CFS. (Even on PR we have an LDA thread that is more than 70 pages.)
I have myself tried LDA and had all of my symptoms (cognitive, PEM, energy, sleep etc) improve dramatically in a short period of time. The results are not due to the way the questionnaire was designed. LDA does something profound in altering CFS.

Also there are very few side effects for *most* people because LDA is at a subclinical dose.
Having said that, I lost all the benefits like many other people after two months and went back to baseline and was not able to recreate the effects even after taking a year off.
As for the research paper, I think their explanation about the involvement of dopamine is merely post-hoc. Also they completely neglect to mention that most patients lose the positive effects after a few months. I spoke to Bonilla about this and he blatantly denied that this happened (I know for a fact he knows about this because i know many of his patients had the same experience: getting better and then returning to baseline).

 

[hapl808]

As for the research paper, I think their explanation about the involvement of dopamine is merely post-hoc. Also they completely neglect to mention that most patients lose the positive effects after a few months. I spoke to Bonilla about this and he blatantly denied that this happened (I know for a fact he knows about this because i know many of his patients had the same experience: getting better and then returning to baseline).

Doctors see what they want to see and what they expect to see. It's one of the (many) things that separate them from actual researchers. Sadly, most researchers aren't really researchers, either. They have a hypothesis, then they reject anything that doesn't support it.

It's very strange with LDA where I've had the same experience - the doctor I spoke to had never heard of it stopping efficacy, yet I find that highly unlikely with the number of reports on forums. My guess is possibly his patients give up and go see another doctor, but they just assume it continues to work. I think that's what most doctors do - if the patient doesn't come back, they assume their brilliance must've suddenly cured them.

I have yet to try LDA, but it's one of the things on my radar. I wish I trusted the experience of those dispensing it more. I also wonder about side effects. If doctors aren't rigorous collecting info about improvement, they are likely even less so when it comes to side effects.

 

[hmnr asg]

I have yet to try LDA, but it's one of the things on my radar. I wish I trusted the experience of those dispensing it more. I also wonder about side effects. If doctors aren't rigorous collecting info about improvement, they are likely even less so when it comes to side effects.

exactly, medicine seems to be one of the few fields of professional work where there is absolutely no feedback mechanism. They get to go home thinking they cured everyone with their amazing advice: "H0Wz YouR DieTZ? D0 YoU Eat Da VeGTablEZ and ExorCize?"

 

[Andryr]

H0Wz YouR DieTZ? D0 YoU Eat Da VeGTablEZ and ExorCize?

Also get enough sleep and stay hydrated

 

[BonitaApplebum]

I have good news today. LDA or low dose abilify has improved my condition immensely. After trying countless supplements and medications. Just to name a few: (Rapamycin, Vortioxetine, Fluoxetine, Escitalopram, Naltrexone, Metformin, ETH,...) I finally found something that improved my condition by 20-30% within a few days. I even started working 19h/Week again. Had my first full week. So far so good. Before that it was only a few hours sporadicly and i got really fast fatigue and flu like symptoms when sitting behind a desk. But now with home office (Software Developer), this is fortunately not a problem anymore. I currently take 2.5mg every other day. The pills are very small (10mg) and I have problems to dose them well. But right now I'm very happy with the result. It's the first drug that really helped. I have improvements in almost all areas (brainfog, pain, fatigue). Unfortunately, what is still modest is sleep, but at least waking up is more relaxed now. Hope this holds up.

Has it caused weight gain?

 

[Dude]

@BonitaApplebum Maybe a little bit. But I'm just setting a bad example in that regard, since I've come up with cfs I've been gaining weight steadily. I used to run marathons and my body just wasn't ready for a complete shutdown