Do any medications/ supplements help?

gravescal

New Member
Hi, I was recently diagnoised with ME/CFS. I have gone from a high functioning, very active person, to basically home bound. Are there any medications or supplements that have helped you?

I am in 2 CFS education/ online help groups (brain retraining).

Does anyone have any advice for a newbie?

I am very grateful for this community.

Thanks in advance.
 

Creekside

Active Member
Yes there are medications and supplements that help with ME. The problem is that each one works for a few individuals, doesn't help others, and makes some worse, and there's no way to tell in advance which ones will work for which individuals. Also, some will work for a few doses, then stop working and never work again; that's sadly common with ME.

In my 20+ years of ME, I've found three treatments that worked really well for me ... but haven't been that effective for anyone else. I've found several more that either cured a symptom or just blocked it for a few months before the problem went away for some other reason (too hard to prove what worked). I've also found a few treatments that worked briefly, but then stopped working. Of course, I also found plenty of things that made me feel worse; luckily none had long-term negative effects.

I see trying treatments for ME as buying tickets in a lottery: there's only a tiny chance that you'll win, but not buying any tickets means that you're guaranteed to never win.

I'd also like to point out that only one of my effective treatments was a prescription drug (LDN). The other two very effective ones were already in my kitchen (cumin and iodine). You can spend a lot of money trying really expensive pharmaceuticals, but I think you're just as likely to find an effective treatment with some cheap things from your local grocery store. A randomly-selected bottle of herbs or spice might be just as likely to help as a $100k six-month antiviral treatment.

One more point: pay attention to changes in your symptoms. If you feel a bit better some day, try to figure out what might have been responsible. A food/activity/symptoms journal is important for this, since human memory is so fallible. Cumin might have been an effective PEM blocker for me for years, but it wasn't until I noticed that some expected PEM (after chainsawing wood) didn't show up that I could check my journal for what might have caused it, and doing intentional experiments to prove what the factor was.

Next time you're shopping for food, look at some food (or herb or spice or whatever) and wonder whether it might be your winning lottery ticket.
 

pamojja

Active Member
Supplements usually don't help, if they aren't only the second but necessary step to lifestyle changes.

For which only persistent experimentation helps, to find out which lifestyle changes and supplements - or the other, sometimes even the opposite from what helps others.

Had a 70% walking disability from PAD 15 years ago, took 7 years to go into remission (with much improvement and worsening too, in between). T2D kept in check with low-carb. COPD, after a 1 year chronic bronchitis in remission (4rd year). Finally, constant PEMs, due to working part-time, only ceased after the 10 year.

Medications, in my case LDN, only played a minor role.
 
IN my personal opinion, Brain retraining will only be useful if your root cause is your brain, or if it's a contributing factor. If you have underlying pathologies or deficiencies then they need to be diagnoses and treated. But learning to manage thoughts and regulate your nervous system can be a really good part of the overall healing process.
Health Rising has the best information out there for us. Cort does an incredible job of distilling the research so that we can make some sense of it. I have basically cured myself from reading this website over many years, then taking my hypothesis and questions to my medical team. It took LOTS of trail and error but I gradually improved.

Good Luck on your journey!
 

Bren

Member
Hello @gravescal,

Yes! There are treatments that can help.

However, it can be a difficult, arduous process of trial-and-error, but I am heartened that relatively recent research is helping me (e.g. by David Systrom on Mestinon/Pyridostigmine). I have personally, and by sheer luck, experienced some improvement with the aforementioned drug (e.g. from 1 or 2/10 daily energy to now ~5 or 6/10...where 10 is a full tank and 0 is bedbound). But my doctor had to increase the dosage gradually. I've been on it since January 2023. It also has helped me with orthostatic hypotension, neurally-mediated syncope (fainting spells), and IBS-C.

My best tip is to find a medical doctor that is a good fit, and specializes in CFS/ME (waiting times can be long, but it's worth the wait). Personally, I haven't found much help in the way of alternative medicine. I stay away from it generally, because it doesn't seem to work for me, it is not as well-regulated, and can also be very costly (here in Canada, alt-med is not covered under public insurance).

Best of luck! Take care, and always remember to pace and protect your energy.
 
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Creekside

Active Member
Brain retraining will only be useful if your root cause is your brain,
... and if it's a problem that can be solved by retraining. There are plenty of brain malfunctions that can't be solved that way. If brain retraining actually works for any problems, it's more likely that it works for a few very specific cases, rather than a technique that only has a few cases where it doesn't help.
 

Creekside

Active Member
My best tip is to find a medical doctor that is a good fit, and specializes in CFS/ME
I think for a lot of us, the stress of searching for a good doctor would be more harmful than the tiny chance that it would result in actual help. While some people might find actual help with ME from a doctor, at this point the doctors are just guessing at what might help, so the chances of success are not much better than experimenting on your own. You might have a 1/100000000000 chance of success with the world's best expert on ME, and the same chance by trying herbs&spices from a grocery store. ME is just that individualistic. Finding a doctor, not necessarily experienced with ME, willing to write prescriptions for drugs could be helpful if there's a prescription drug that might help with a specific symptom. I've had better success with things already in my kitchen than from prescription drugs. It's a matter of luck.
 

Bren

Member
I think for a lot of us, the stress of searching for a good doctor would be more harmful than the tiny chance that it would result in actual help. While some people might find actual help with ME from a doctor, at this point the doctors are just guessing at what might help, so the chances of success are not much better than experimenting on your own. You might have a 1/100000000000 chance of success with the world's best expert on ME, and the same chance by trying herbs&spices from a grocery store. ME is just that individualistic. Finding a doctor, not necessarily experienced with ME, willing to write prescriptions for drugs could be helpful if there's a prescription drug that might help with a specific symptom. I've had better success with things already in my kitchen than from prescription drugs. It's a matter of luck.
I think that's a fair point, but I like to be medically guided personally rather than experiment on my own. I've done both, and got results from the former. Also, my MD (an Environmental Health Specialist who has a very Integrative approach) also had me on various herbs and supplements (over 20 at one point)...some were okay, most didn't do much, and some had intolerable side effects (especially herbal tinctures). Mestinon really worked, and without side effects. You're right that it's really *very* individual, but the problem with only trying "herbs and spices from the grocery store" is that you have no access to prescription medications that *could* help. Also, if you like DIY, you can totally do that with a doctor; a good doc will be open to you bringing up suggestions - prescription or nonprescription.
I really did not reply to impose my approach on anyone; I just spoke from my own experience of 7 years of moderate-to-severe ME/CFS.
Thanks for your input; I have no more energy to debate this so this will be my final posting on this thread.
All the best to all.
 
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GrammaLinda

Active Member
I think for a lot of us, the stress of searching for a good doctor would be more harmful than the tiny chance that it would result in actual help. While some people might find actual help with ME from a doctor, at this point the doctors are just guessing at what might help, so the chances of success are not much better than experimenting on your own. You might have a 1/100000000000 chance of success with the world's best expert on ME, and the same chance by trying herbs&spices from a grocery store. ME is just that individualistic. Finding a doctor, not necessarily experienced with ME, willing to write prescriptions for drugs could be helpful if there's a prescription drug that might help with a specific symptom. I've had better success with things already in my kitchen than from prescription drugs. It's a matter of luck.
I am in agreement with you. Although Cymbalta has helped with depression from fibro/me pain. I do believe in natural unprocessed foods and supplements especially those that have been in use for thousands of years. We are all unique, obviously - equal diets and lifestyles and still unequal health wise . My neuros just say yup, you have CFS and send me out the door. After all these years I still opine what now, what am I supposed to do ? I am on a personal quest researching posts and threads about what has worked or not and doing further research into that product.
 

NYStew

Member
Yes there are medications and supplements that help with ME. The problem is that each one works for a few individuals, doesn't help others, and makes some worse, and there's no way to tell in advance which ones will work for which individuals. Also, some will work for a few doses, then stop working and never work again; that's sadly common with ME.

In my 20+ years of ME, I've found three treatments that worked really well for me ... but haven't been that effective for anyone else. I've found several more that either cured a symptom or just blocked it for a few months before the problem went away for some other reason (too hard to prove what worked). I've also found a few treatments that worked briefly, but then stopped working. Of course, I also found plenty of things that made me feel worse; luckily none had long-term negative effects.

I see trying treatments for ME as buying tickets in a lottery: there's only a tiny chance that you'll win, but not buying any tickets means that you're guaranteed to never win.

I'd also like to point out that only one of my effective treatments was a prescription drug (LDN). The other two very effective ones were already in my kitchen (cumin and iodine). You can spend a lot of money trying really expensive pharmaceuticals, but I think you're just as likely to find an effective treatment with some cheap things from your local grocery store. A randomly-selected bottle of herbs or spice might be just as likely to help as a $100k six-month antiviral treatment.

One more point: pay attention to changes in your symptoms. If you feel a bit better some day, try to figure out what might have been responsible. A food/activity/symptoms journal is important for this, since human memory is so fallible. Cumin might have been an effective PEM blocker for me for years, but it wasn't until I noticed that some expected PEM (after chainsawing wood) didn't show up that I could check my journal for what might have caused it, and doing intentional experiments to prove what the factor was.

Next time you're shopping for food, look at some food (or herb or spice or whatever) and wonder whether it might be your winning lottery ticket.
Doyouuse a compounding pharmacy and The Bukari Method?
 

NYStew

Member
Yes there are medications and supplements that help with ME. The problem is that each one works for a few individuals, doesn't help others, and makes some worse, and there's no way to tell in advance which ones will work for which individuals. Also, some will work for a few doses, then stop working and never work again; that's sadly common with ME.

In my 20+ years of ME, I've found three treatments that worked really well for me ... but haven't been that effective for anyone else. I've found several more that either cured a symptom or just blocked it for a few months before the problem went away for some other reason (too hard to prove what worked). I've also found a few treatments that worked briefly, but then stopped working. Of course, I also found plenty of things that made me feel worse; luckily none had long-term negative effects.

I see trying treatments for ME as buying tickets in a lottery: there's only a tiny chance that you'll win, but not buying any tickets means that you're guaranteed to never win.

I'd also like to point out that only one of my effective treatments was a prescription drug (LDN). The other two very effective ones were already in my kitchen (cumin and iodine). You can spend a lot of money trying really expensive pharmaceuticals, but I think you're just as likely to find an effective treatment with some cheap things from your local grocery store. A randomly-selected bottle of herbs or spice might be just as likely to help as a $100k six-month antiviral treatment.

One more point: pay attention to changes in your symptoms. If you feel a bit better some day, try to figure out what might have been responsible. A food/activity/symptoms journal is important for this, since human memory is so fallible. Cumin might have been an effective PEM blocker for me for years, but it wasn't until I noticed that some expected PEM (after chainsawing wood) didn't show up that I could check my journal for what might have caused it, and doing intentional experiments to prove what the factor was.

Next time you're shopping for food, look at some food (or herb or spice or whatever) and wonder whether it might be your winning lottery ticket.
Do you use the Bukari Method and which compounding pharmacy. Initial dose? It helped me previously and would like to restart. I believe the pharmacy was in Colorado
 

Hippymum

New Member
I'm in the UK. I've had ME for 40+ years, and finally got a fibro diagnosis 10 years ago. I have many other autoimmune and genetic conditions.

Low dose Naltrexone has been life changing for me. It's made a huge difference to my brain fog, pain levels and energy levels.

I also take pre and probiotic gummies as well as turmeric and ginger gummies. I find these have helped my GI problems enormously.
 
I always worry about highly active folks contracting this illness, as conventional wisdom for recovery from illness has been "you just need more exercise..." Pacing is actually critical. In my 17th year, but did not start improving until after I quit my 55 hr/week management job 4 years into ME/CFS. I had a sore throat that lasted for months at a time. 3 week intervals where I was fine for 3 and down for 3. Literally could not put a sentence together one day and totally fine the next. Had problems putting one foot in front of the other during the relapses which really scared me - hence the pacing. Neuroinflammation was bad in early years. I used a cranial cap which I could put in the freezer. All these years later an Aleve will relieve the occasional neuroinflammation. I continue to look for supplements to help the Hypothalamus as I have from the beginning.
A little goes a long way with supplements for me. So I buy liquid and bulk when necessary to adjust the dosage more easily. Supplements that provide energy can keep you up all night!

Keep Vitamin D3 test levels above 50
Astralagus - I take this at start of relapse
Ashawgandha - don't take much lately but was fantastic with anxiety at one stage
L-Theanine - currently take for anxiety before I go to bed - 100 mg.
Magnesium
Tumeric
Kelp supplement of once a week or so for iodine as none in my salt
Fish oil
L-Tyrozine - affects thyroid balance
Cannabis products for pain
Homeopathic products like Arnica for pain
Pre/probiotics

Been fighting circadium rhythm issues forever. My best time of day is 11 p.m. I now take THC/CBN gummies and Hyland's Calms Forte for getting to sleep but still average 1 a.m.

Champagne, Cava or Prosecco have been VERY helpful over the years. People laugh, but I finally figured it out: Champagne increases the availability of Nitric Oxide in the blood, a vasodilator:
From Healthline: "Numerous fruits and vegetables, like spinach, beets, radishes, arugula, and leafy greens, contain nitrate [2]. Nitrites are created when bacteria eat nitrates in the mouth and digestive system. The subsequent conversion of nitrites produces nitric oxide, crucial for many physiological functions."
 

Creekside

Active Member
Do you use the Bukari Method
No, I used the "Hey, something I ate reduced my symptoms. Now I have to figure out what it was and what dosage is optimum for me." method.

For which compounding pharmacy I used for LDN, I used the closest one (Hinton AB at that time). I don't expect it matters for something like LDN. My initial dose was the usual 4.5 mg, which worked well, but it worked just as well for me at 2.5 mg. Some people feel that it's important to start at really low dosage and build up, but starting with 4.5 mg worked well for me, so my experience doesn't support the slow build up philosophy.
 

HJR

New Member
One of the most helpful treatments, for me, in reducing PEM has been pretreatment with ibuprofen (200 mg) and CBD(~100 mg). By pretreatment I mean taking the ibuprofen and CBD BEFORE I engage in physical activity. Both CBD and ibuprofen have antiinflammatory effects, which seem to be what helps reduce PEM. If I forget or am unable to take the antiinflammatories before physical exertion, I feel much worse the following day.
I am concerned with long term side effects of ibuprofen (and other NSIADs), so I keep the dose to 200 mg and I don't take it every day. I reserve the ibuprofen for the maybe 1-2 days per week where I do ~1 hr of light-moderate exercise. The CBD I take every day. I buy it in bulk powder form, which only costs ~$5/gram.
 

ruanmalan

New Member
Its a shock to one's system and seems to rob one's life, hang in there, many have had significant improvement or recovery!
Various places on the internet have surveys of what supplements helped most people e.g. Low Dose Naltraxone seems to have higher general success rate than many others, as a few people here also mentioned it helping them.

You need to persist in trying things and eventually you find things that help, if you stack enough of those over time you get dramatic improvement, but a single full fix has up to now probably been the exception rather than the norm. In my case I regularly tried the most common or promising ones but then am forced to delve into treatments for my symptoms that are worst at any given time.

In my case decades of CFS and microcirculation and auto-immune issues were much improved due to a regimen I built up over time. Then with Covid and subsequent flus it took a big knock again. Research in the last few years around persistent micro clotting common across chronic conditions and very marked in long covid have been an absolute eye opener for me - see https://keithcellisphd.substack.com/
Out of the vast number of antioxidants I have tried for the diverse array of circulation related issues I have had to deal with, a small percentage have had dramatic effect. Going off them for even a few days has dramatic worsening of my condition which has always puzzled me. It turns out they were all anticoagulants affecting two of the three main coagulation/platelet activation pathways targeted by triple anticoagulation therapy - Turmeric, White Willow bark, Skullcap, Pomegranate. Studies on individual anticoagulant drugs have all shown one cannot break chronic illness cycles by targeting only one pathway. Very high clinical success rates with triple anticoagulation therapy has not yet been backed up by funded trials. Those with bleeding risks need to be carefully monitored and cardiologists are trained therein and routinely use triple anticoagulation therapy, but for use with other chronic conditions doctors tend to be nervous.
The third anticoagulation pathway that is not impacted by any yet identified commonly used western herb or supplement and only by prescripton medicine is to inhibition of the P2Y1 and P2Y12 receptors. There is a herb very widely used for many centuries in China and since the 80s formally endorsed by cardiologists in the west for some circulatory challenges: Danshen (Radix Salviae miltiorrhiza)
Specialists in the US and South Africa who have been using the prescription triple anticoagulation regiment have seen success rates not yet seen in chronic conditions like these and lately mostly focussed on long covid. They warn the worst detox might happen in the third week, it is still a gradual process,

Another aspect is that one's amygdala can become overwhelmed and stress and anxiety and dorsal vagal nerve shutdown can become a runaway spiral. This is especially because trauma often contributes to the conditions trigering chronic illness. I have had to do a lot of work around calming my nervous system without shutting it down, for many years that had to be my primary focus, but its generally easy to manage now. If that happens to you there are many learnings others and I can share that worked for us and might work for you, e.g. Ashwagandha, Taurine, Buspirone, Wim Hoff Breathing, Breathing out twice as slow as in, belly breathing, throat pressure, DBT.

Hopefully you find enough of what worked for others to make enough of a difference for you that you feel motivated to persist in searching for full recovery and hopefully you will eventually share your full recovery story here with the rest of us, good luck!
 
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Gitfiddle

New Member
Hi, I was recently diagnoised with ME/CFS. I have gone from a high functioning, very active person, to basically home bound. Are there any medications or supplements that have helped you?

I am in 2 CFS education/ online help groups (brain retraining).

Does anyone have any advice for a newbie?

I am very grateful for this community.

Thanks in advance.
Hello,

I’ve been disabled with ME/CFS for 37 years. I’ve spent thousands of dollars on supplements and vitamins, all to no avail. Some even did more harm than good. I was on turmeric for several years and it caused liver problems.

I now just take a multivitamin (Centrum Silver) and a vitamin D , because I’m actually deficient in D according to my blood test. I wished I had all that money back I wasted trying everything other people with ME were taking.

The only medication that has actually made a difference is low dose Naltrexone which I’ve been on for 6 years. I take 2 milligrams and helps greatly with pain, POTS, and mood.

Good luck!
 

Creekside

Active Member
I’ve spent thousands of dollars on supplements and vitamins, all to no avail. Some even did more harm than good.
Think of those purchases as lottery tickets: most of the time you just lose your money, but if you never buy a ticket, you're guaranteed to never win. If you hadn't tried all those things, you wouldn't be sure that one of them wasn't helpful for you.

In my 20+ years of ME, I've probably only spent hundreds on possible treatments, mostly because I didn't match the symptoms/responses of people who touted their treatments, and because I didn't feel that the theories some of the treatments were based on were valid (viral cause, mitochondrial cause, etc). I did try some immune modulators, with no success, so wrote off that category. I tried some other categories, with no success, so wrote them off too. I did manage to accidentally stumble across two treatments that did work really well for me (cumin and T2 (3-5 diiodothyronine)), so those were "winning tickets". LDN was the only treatment I tried based on other people's success stories, and it did work well for me, although in a different way (pain blocker) than most reported.

I've also chewed on various bits of plants I came across on my walks in the forest, just in case one of them happened to have just the right chemical to be helpful (no wins so far). I think that for many of us, there is some natural treatment that would help. Unfortunately, that specific leaf or bark or fungus or maybe even insect might be found only in a tiny patch of remote rainforest, with no way to know in advance where to look. Still, you could stumble across something in your local grocery store or maybe an ethnic store, so pay attention to any unexpectedly better days: it may let you figure out what you ate/did differently that had an effect. Paying attention to things that make your symptoms worse is important too, because aside from knowing what to avoid, it could lead to figuring out what might have the opposite (beneficial) effect.

Oh, one more example of accidental treatments/cures. My ME started as what seemed to be a type IV food sensitivity, which gave me what I didn't realize were ME symptoms for 2.5 years. Then I made some curry with canned coconut milk that I didn't realize had spoiled. After a night of unpleasant discomfort and mess (typical food poisoning), my type IV reaction to foods was gone. Food poisoning for the surprise win! My guess is that my immune system was reacting to some bad bacteria, and the flushing out eliminated it, whereas several treatments of antibiotics didn't eliminate it.

So, don't give up "buying lottery tickets (ME treatments)"; there's always the possibility that one of them will be a winner, and effectively treating even one ME symptom might be worth at least thousands of dollars to you.
 

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