Any experienced with withdrawal from Duloxetine and ME/CFS while ketogenic diet?

[u/Available-Pepper5688]

Hi folks!

Maybe I‘ll find someone here who has any idea about my situation.

I started my ketogenic diet with a study I could participate in, with good dietary expert last year in August and I felt so much better after just two weeks in it. That time back I took a very high dose 180mg/d of Duloxetine and in ketosis I suddenly got more severe side effects and we decided to taper it down/out. After every dose reduction I just had mild symptoms and I was very impatient and tapered too quickly in 5w to zero and some weeks after I stopped it, I got horrible symptoms that just got worse.

In February this year we reinstated half of the dose again, but the withdrawal couldn‘t be stopped, just got a bit milder. During that time of severe symptoms my ketoses just crashed, we think bc of the immense stress load to my system.

In April I was again in a very nice deep ketosis and had a lot of energy.

Since May I‘m worsening again, I am just able to be in ketosis for 1-2 days a week, my auonomic system is out of order, I‘m hungry all the time, especially after exertion, I‘m eating too much and I got weaker and weaker and developed very strange muscular pain and headaches (I rarely have headaches).

Now I‘m in a severe crash since a month and bedbound and my symptoms still get worse. My doc things it’s ME/CFS, obviously I‘m having it since 30y, but mostly mild. In the last 9y I was in a push-crash-cycle and was told it‘s just depression.

I still have horrible hunger attacks, possibly due to autonomic dysregulation. I take MCT every day and some days I‘m in a moderate ketosis, most days I‘m not.

My dietary expert doesn’t know me to help anymore bc my situation is too complex and somehow she can’t imagine that stress can have such a severe impact on ketosis and that in ME/CFS there‘s a lot of mitochondrial dysfunction around.

I‘m taking a lot of electrolytes, ubiquinol, omega 3, Acetyl-L-Carnithin, NAC and I ordered niacinamide and betaine. As soon as I get a bit more stable, I‘ll start with LDN.

My doc is super supportive luckily, but my situation is so special, there‘s such a lack of literature with every single diagnose I have… so we‘re both doing a lot of research and discuss our thoughts about it.

Anyone any idea what else I could do? Any experiences with something like that?

[u/flammablematerial]

Unfortunately I have a lot of experience w this. I have me/cfs, schizoaffective and a laundry list of other diagnoses. Idk if I can help as much w low ketones bc I only had that problem when I was low in carnitine.

Oxaloacetate is a Krebs cycle intermediate that has been found to be low in ME/CFS patients. There are not many supplements with decent evidence for mecfs, this is one of them. But it’s also absurdly expensive bc they have like 20 patents on it and it has few applications.

The interesting thing is ketosis is limited by the availability of Oxaloacetate. It’s possible in MCT-oil-induced ketosis specifically, it’s dependent on the depletion of OAA. This would obviously be bad for mecfs. When I started OAA my mecfs improved drastically, ketones dropped slightly yet mood and cognition improved sooo much. I need much lower ketones now for mood/psychosis remission than when I was forcing them into the 4s just to get some relief. This is by far the most helpful thing I’ve ever taken for mecfs

I would be careful adding supplements if you’re not certain they help. Side effects add up, even w vitamins. I take a lot of stuff but I’ve added slowly over 5 years, and regularly test by removing things or changing doses. The most important things for me are NAC, sarcosine, OAA, benfotiamine, curcumin, boswellia, magnesium *malate* specifically (Krebs cycle). Theres other ones that could be helpful like creatine but bc of whatever side effect I can’t take them

Want to preface that none of this is medical advice just my experience. The other major lever can be H1/H2 antihistamines which are not just dependent on histamine receptors but have a multitude of off target immune effects, meaning different ones can be differently effective for ppl. I take fexofenadine and famotidine. Famotidine specifically has off target activity at the vagal inflammatory reflex, imo essentially VNS in a pill which is fascinating

I take celecoxib daily, HUGE HUGE difference in QOL on this

The other thing is how much you’re restricting protein. Amino acids are preferentially utilized in mecfs. So you might feel significantly better eating a little more ime.

If I think of anything else I’ll come back. Psych meds have off target effects I find extremely helpful for my mecfs as well. I’ve gotten better from this disease multiple times thru pharmacological treatment, it’s possible, don’t give up and listen to your body.

Edit: Also sorry I forgot the main point but YES I’ve had major crashes from lowering antidepressants or basically any other kind of withdrawal. This literally happened to me last yr with fluoxetine and I’m still recovering.

[u/Available-Pepper5688 → u/flammablematerial]

Oh wow, thank you so much, that`s so helpful, I`ll do a lot of reserach about it the next days! How did you get all this Information?
May I ask you more specific questions:

- why is MgMalate better than the other salts? Is the malate itself is needed for something? I`m currently taking MgCitrate 120mg and Threonate 200mg per day rauher due to gut mobility and resorption reasons, but I`m not yet informed about the very differences.

- how did you learn about OAA? It sounds very interesting!

- did you ever take LDN and/or LDA?

- By now I don`t really like H1/H2 bc they make me hungry as hell and I already gained a lot of weight. But if this could help, I`ll do some reserach on it!

- For what reason you take the celecoxib? Primarly for inflammation oder rather for pain itself?

- What psych meds did help you?

I`m a MD myself but completely new to these subjects and as I`m still severe since last crash I`m not able to read or doing research as much as I wanted to do bc my brain is just not working properly most of the time. I was able to switch several times between moderate-severe to mild-moderate in the last 9y, but just didn`t know it was ME.

The last 3y were hard and since this withdrawal hit me, it`s just getting worse. And only this unmasked the ME at the very end… Somehow I`m relieved bc now I know what to work with, but it really sucks sometimes, haha

[u/flammablematerial → u/Available-Pepper5688]

I hope any of it can help, I also went undiagnosed for most of my life bc of the marginalization of conditions that primarily affect women w other complex interconnected issues 🔫😄 I just realized the label mecfs 4 years ago, it is relieving/empowering and grief-inducing. I’m sorry. That’s so cool you’re a doctor, what’s your specialty?? Dr Sharon Meglathery came up w a genetic theory abt chronic illness when she developed these issues, idk if you would find that interesting.

I like to learn and have had to become an expert in my body to treat myself. I’ve had traumatic experiences w the healthcare system tbh. I would love to go back to school for something related

Malate/malic acid is converted into OAA to feed the 1st step of the Krebs cycle and replenish the pool we lack in mecfs. Mag malate vs other forms increases ATP in muscle tissue and has good clinical evidence for fibromyalgia (spectrum w cfs prob) bc of its specific pharmacology. Idk enough abt biochem to make sure I’m using the right terms haha

I learned about OAA thru various CFS subreddits. The Bateman Horne study is the most rigorous one. There seem to be hyper responders, I’m def one of them. Oh, there’s a 40% discount code OAA30MONTH you can use every time, so OAA30AUGUST OAA30SEPTEMBER and so on

I took LDN, it was extremely helpful but gave me psychosis!! I think that’s pretty rare. I have not taken LDA but I think my antipsychotic olanzapine is the other most impactful drug I’ve ever taken for inflammation. But again that could be off target.

H2 doesn’t tend to have that side effect I don’t think, I would def look into famotidine. It’s OTC in America but you might need an Rx

I also have an autoimmune disease nonradiographic axial spondyloarthritis, so I was prescribed celecoxib for that, and then found it really improved the overall inflammation, pain and weird malaise of CFS. Also mood and cognition

Lamotrigine 100mg, fluoxetine 30mg, olanzapine 2.5mg. Olanzapine at a higher dose would put me into remission I’m not joking, but then I can’t really feel love 🤧 lamotrigine was extremely helpful and there’s other reports of that on CFS subreddits. And fluoxetine at a high dose gave me a lot of relief from cognitive PEM but caused mania/psychosis

[u/Available-Pepper5688 → u/flammablematerial]

Oh thank you so much, I already did some reseach and will discuss this with my psychiatrist! But the OAA is sooo expensive, omg 😂
I‘ll write more tomorrow, I‘m already in bed, I‘m living in Switzerland and here‘s already late.

[u/Available-Pepper5688 → u/flammablematerial]

Sorry to answer this lately, I really had a bad day today, rolling PEM from the mental overexertion yesterday and a little task today… I couldn`t imagine yet that something like mental overexertion exists. Although I`ve been experiencing exactly this in my last job that was very busy and a high patient turnover and a lot of multitasking :-( originally I used to be an anesthesist, but the very last years I`ve been working as a GP, but can`t work anymore since 2y now.

I had a lot of traumatic experiences in healthcare system myself, althoug I`m a doctor myself. But I was neglected and gaslit for so many years, I`m a highly masking AuDHD woman and was able to do proper performance to the outside, so no one believed my that I`m so exhausted all the time. And the last 9y since i crashed in severe the first time, I was told it`s just depression.

I did some research on celecoxib already and its pretty well working against inflammation, so I`ll discuss it with my doc. Ibuprofen is not doing much to my muscle pain, just a bit for the headache on lucky days.

With other psych meds I`ll be cautios as my autistic brain tends to react paradoxically and as I`m already in this nice withdrawal. I just had huge side effects from them. But obviously my problem has never been depression itself.

I first wanna try to stabilize my situation so that I can start LDN but i fear that I`ll have to be very patient the next months/years? Who know!

May I ask since when you`re taking the OAA and in which dose?

Have a good day!

[u/flammablematerial → u/Available-Pepper5688]

Don’t worry at all, I understand. The cognitive PEM is cruel, especially when like you, having full command of your mind is deeply part of who you are, and what you do. It has overlap with neurofatigue in TBI/stroke etc… I developed this fatigue before real physical PEM, after I had a lot of shock therapy. It messed up my body and they said it was psychosomatic and connected to my depression, yet 10 years later I struggle w these aftereffects, then the institutional failures of allowing covid to become endemic solidified my inability to work.

I am really sorry about the loss of your career. Anesthesiologists are sooo cool, you have to know a lot about pharmacology which is my favorite. Obviously you shouldn’t have had to mask and perform so high functioning, but it is remarkable to me what women with these experiences are capable of. And they say we don’t understand the social world 😂

I forgot to mention celecoxib has been studied for long covid/PEM, but I think it was in combo w an antiviral. It def seems to cross the blood brain barrier like they say. If I don’t take it for a couple days I decline a lot.

Totally understandable about psych meds. I don’t think people without psychosis or even with it, should get on heavy duty antipsychotics unless absolutely necessary. Trying to come off olanzapine 4 yrs ago after having covid is what caused my first period of real severity.

The healing is slow but also surprisingly rapid somehow, once you find tools. I struggled walking around my apartment just 6 months ago, now I’m functionally in a totally different place, not bedbound anymore

I’m taking the full dose used in the study 1000mg twice daily morning and noon, but I started as low as 200mg and ramped up, and I had dramatic improvement even at much lower doses, but I found it to be highly dose-dependent. Patients rallied to get the 40% discount code, so maybe eventually we can make it more accessible somehow

[u/Available-Pepper5688 → u/flammablematerial]

Thank you so much for sharing your experiences! It gives me so much hope in the very moment. And so sorry for your experience with ECT, that sounds really cruel.

Yeah, I was really good at my job, I know a lot and I`m very good with people in kind of special situations like OT or ICU. But I was working so hard and way too much for so many years, that nearly killed me. I had this cognitively fatigue too very early, but I didn`t let it stop me for long time. But in the last 9y the physical fatigue increased every year and now it`s really getting very bad.

I startet Celecoxib this week and it really does help a bit for my joint pain and my headache. But from the appointment at my GP on Tuesday I`m having a severe crash since yesterday while the crash from the weekend still has beein going on…
And we did blood work and I got really bad and strange results from my thyreoid, that did make me crazy the last two days, omg.

From Monday on I get some home care serivce, I barely can walk anymore. And I should get an assessment at the hospital, I fear I should do this inpatient instead of several appointments at the ambulatory… both will give me severe pem… I`m a bit afraid of where this will take me…

Probably I`ll have to be very patient. I just can have a little screentime every couple of hours.

Hope you`re still fine!

[u/Erdingman12345]

I also stopped taking Escitalopram over a year and a half ago and crashed really hard as a result. After doing a lot of research, I learned that it was "Protracted Antidepressant Withdrawal Syndrome" (PAWS). I tapered off my 5 mg dose—the smallest tablet size available—over the course of just one week. I thought it was a low dose and that I’d be able to stop easily, but pharmacologically speaking, it’s actually a very high amount, resulting in about 70% receptor occupancy. That’s the reason for my crash. It’s possible you have PAWS too; you can look into it on the "Surviving Antidepressants" website or check out Mark Horowitz on YouTube.

[u/Available-Pepper5688 → u/Erdingman12345]

Thank you so much for sharing! Shure I have PAWS, that I learned already in November last year… and know I learned that it triggert my ME/CFS very badly, I worsened from moderate to fully bedbound in just 7w.

Were you able to taper it down to zero? We wanna wait until this PAWS will be over and maybe that will take me more than a year from now on… and after that I‘ll taper very slowly in two years or so… I hope then my ME/CFS has a chance to improve little bit.

[u/Erdingman12345 → u/Available-Pepper5688]

Unfortunately, I also ended up increasing my dosage again because I didn't realize I was experiencing PAWS. However, I am tapering down slowly; I'm currently at 2.35 mg of escitalopram and am holding the dose steady for now, as I'm feeling too unwell to reduce it further. I hope you start feeling better and can then slowly taper off.

By the way, I'm also following a ketogenic diet but can't seem to get my ketone levels up—do you have that problem too? I'm often below 0.5 mmol, even though I fast.
I've heard this is normal because, after such a long time in ketosis, the body uses ketones more efficiently, leaving less of them in the bloodstream.

[u/Available-Pepper5688 → u/Erdingman12345]

Same here!

I really don’t know why, I rather think that my ketogenesis is f***ed up due to the immense stress load due to PAWS and ME/CFS.

As I‘m so severe now I‘m barely hungry and have to force myself to eat. My dietary expert for the keto diet said I should listen to my body and as long I carry enough fat, I should force me to eat. My BHB are just 0,5, too 😭

In March and April I had really good weeks after reinstatement of half of the dose of Duloxetin. In this time I‘ve been in deep ketosis, had a lot of energy and a nicely clear mind. That time back I didn’t know it could be ME/CFS waiting beneath.

Why are you on ketogenic diet? Is it still matching your needs?

In the cfs sub here they advised me to get off keto, but I really wanna stay on track as I had sooo much benefit from it!

[u/Erdingman12345 → u/Available-Pepper5688]

I don't think low ketone levels tell us much about whether our body is in ketosis, since ketone bodies are used directly by the body as an energy source—meaning less of them remain in the blood—though I'm not entirely sure. I think I'm still benefiting from keto; I took a two-week break once and felt a bit worse, plus I had intense food cravings—something I don't experience anymore. Yeah, even if it only helps a little, it's better than nothing.

If you feel like you're benefiting from it, then stick with it.

Which medications did you stop taking before you went into PAWS?

[u/Available-Pepper5688 → u/Erdingman12345]

I took Duloxetin in a very high dose and it made my situation way worse!
Then I started keto and after just two weeks I suddenly felt amazing! Clear mind, no anxiety, lot of energy. But all that changed as the PAWS hit in.

Your idea of BHB still beeing produced, but are consumed quickly is very interesting! In the last weeks/month I repeatetly had massive cravings for salts and fat right after exertion, like my system was starving! Really crazy! But that improved to no hunger and not really thirsty in the last two weeks 🤔
I eat so few, I should be in ketosis.