Do any medications/ supplements help?

[valdezfa48]

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.

Bren, thx for your post. I took Mestinon and it made me feel normal for a day then dropped off. I’m on low dose Ritalin now which is helping with the sx you mentioned, but can you please tell me if Mestinon helped you with any cognitive deficits? Thank you for your time.

 

[AEW]

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.

Hi, I was told by the doctor who diagnosed my fibromyalgia to take malic acid. I take it with magnesium in the form of magnesium malate and it is my pain medicine. I’ve taken it since 2008 and I’ve tried to stop it but can’t. It hurts too much without it. I take 3750 mg at bedtime.
Diet is a strong key. Get off gluten and sugar. Eat only whole fruits. Berries are best. A nutritionist told me to heal my gut. I’m still trying to figure out how to do that but a book I read recently called The Holistic Gut Prescription by Lauren Deville will help you. I discovered through reading it that I have SIBO and am treating that with antibiotics and low fodmap diet. It’s certainly helping my gut issues if not my fatigue levels.
Get allergy and thyroid tested.
Try PEMF. My fibromyalgia specialist put me onto that and it works for me. I invested in my own device and treat 3-5 times a day. Over 8 months it has helped with energy, pain, brain fog, arthritis of knee and hands, and a slight reduction of my POTS. The negatives are its expense and the time it takes. It’s running my schedule at the moment. (I chart everything I do, from treatments to food changes, and I recommend you do that too.) Another negative is the delicacy of the equipment. I am replacing the exagon sense attachment of my iMRS Prime device at a cost of $1000.00. I tried to stuff my hand into my pocket with the oximeter on and kinked the cord. The whole system costs $7,000. Treat it like gold. No, treat it like eggs.
Another book that helped me was Myofascial Disease and Dysfunction by Travell and Simons. Chapter 4 discusses perpetuating factors of chronic pain and I bought the book for that chapter alone. Some of its main take aways: pay attention to nutrition, thyroid, ergonomics, and pacing. Don’t do any activity for more than 2 hours. If your body is off-normal, get a work chair that puts your hips and knees at right angles, and your elbows should be at right angles on your work desk when you sit straight in your chair.
Exercise very gently. Tai chi and walking are good, if you’re able. Stretch every day. Keep a routine. Meditate.
Avoid toxic people.
Educate yourself. Find medical practitioners who will work with you even if they don’t understand your disease. If they won’t help, find someone who will. Good luck.

 

[jaminhealth]

My LONG TIME supplemenet has been Grape Seed Extract ,, been taking it 29 yrs soon....I deal with a load of arthritis, FM was always a questioh,n no CFS but plenty of fatigue at 86 soon, I could use more Thyroid but it's gotten so damn $$$...so I cut back.

A friend with ME for many yrs. believes MORE potassium is critical for more Energy....get your potassium tested and look at the potassium foods you eat. I like to see potassium level at mid range at leawst, not low on the range.....

Food does help but NOT ENOUGH...

 

[jaminhealth]

My LONG TIME supplemenet has been Grape Seed Extract ,, been taking it 29 yrs soon....I deal with a load of arthritis, FM was always a questioh,n no CFS but plenty of fatigue at 86 soon, I could use more Thyroid but it's gotten so damn $$$...so I cut back.

A friend with ME for many yrs. believes MORE potassium is critical for more Energy....get your potassium tested and look at the potassium foods you eat. I like to see potassium level at mid range at leawst, not low on the range.....

Food does help but NOT ENOUGH...

 

[Woundedwarrior]

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.

I am not a doctor and what follows should not be taken as medical advice, just someone with M.E. sharing their experience. The two vital bits of information are that pacing is vital to prevent Post Exertional Malaise which is harmful and strongly associated with deterioration. So how you use your energy below that threshold that triggers PEM is up to you, but no amount of 'thought retraining' or exercise, or 'building up', or 'activity management' that takes you over that threshold and triggers PEM is going to help - it will simply be making you deteriorate. The deterioration can be anything from virtually imperceptible but building up slowly over time, to sudden and drastic. The second is that the disease can kill, so don't mess with it by overdoing it as it's possible to deteriorate fast. Remember the disease is multisystem - impacts GI as well as muscles, brain, breathing etc.
Regarding supplements, there are two medications that come first to mind, before supplements. They are LDN and LDA, Low Dose Naltrexone, which may not give you any improvement you can notice, but which is thought to be helping to restore NK Cell function. You can google what NK cells do and why they are important. They are apparently compromised in ME/CFS. Low Dose Aripiprazole (trade name Abilify) is widely used, and has side effects but can be a game changer for some. It is the only thing I've found in 46yrs of the disease that can raise my PEM threshold. When you are very low in function, even a small improvement feels large, but take care to read take medical advice before deciding. Supplements - my consultant recommended Magnesium, quercetin, Vits C, D, B12 (which helps energy while you are below PEM threshold), zinc, selenium, flushing niacin. Be careful not to take too much of anything - read, check, follow medical advice. I also take Coq-10 particularly when in PEM or brushing the threshold, and that seems to help a little. For generalised pain, I don't use opiates as my gut problems get worse, so I rely on nortryptyline on prescription, plus paracetamol when needed. Transcutaneous Vagus Nerve Stimulation (a regular tens machine, ear clips right on the body of the earlobe close to the scalp, 30 mins x 3 a day, the settings are on the facebook group A Vagus Adventure. There's studies ongoing, but it seems to enable me to get deep sleep, so I don't just doze on and off at night, I can get a proper night's sleep even if I still wake up with an 'uncharged battery'.
I have to take about three different antihistamines to handle MCAS which often comes with ME/CFS, and supplementary fluids are vital for many of us because so many of us get orthostatic intolerance (difficulty standing, being upright for any length of time even sitting etc) due to low blood volume. So hydration is really important. I also take sodium cromoglycate tablets to damp down gut problems/food intolerances and it definitely helps. I don't know if any of that is any use - if you have low mood and need an antidepressant, some are recommended for people with ME/CFS and some not, but I don't have that information. I do hope you improve, don't waste money on people who claim to be able to cure you, it's snake oil. The only private treatment I'm aware of that has anything remotely like a positive reputation is HELP Apheresis, controversial, and very expensive, only available in a few places in the world. It removes microclots among other things, in LC and ME. However, having done the 'home test' for microclots I don't seem to have them - so it may be it is more helpful for a subset of people with Long Covid than for ME/CFS. According to Prof. Pretorius our microclots are different to those with LC. The pace of research is picking up, so don't give up. Even life in bursts of two or three minutes between long rests can be worth living.

 

[ediirwin]

I was helped by studying the book ME/CFS/PVFS The MEA Clinical & Research Guide An Exploration of the Key Clinical Issues. This book is from the UK ME Association April 2022. Been taking acetyl-l-carnitine 750mg twice per day for stamina, Duloxetine 650mg/day, and Low Dose Naltrexone 4.5mg/day. (Used to be on Neurontin for pain, but it can cause respiratory depression.) This combo is not ideal, and I take Tylenol Arthritis or acetaminophen with a muscle relaxant.

 

[ediirwin]

I also take Efamol evening primrose oil and a drop of Oregano oil in water.

 

[Rose Munro]

I wanna talk about: NAD; Methylene blue; red light therapy.

Every 2 years I loop back and look at the research/online developments. It really is very encouraging to see everything that has come out in the last couple of years.

I've been listening Nancy Klimas's institute's (INMI) pod cast where they emphasise the role of inflammation in ME (esp neuro inflammation), detoxification and nutrition endlessly, and where they're not anti-supplementation. So I've investigated some supplements and treatments targeting those issues which I'm now going to try.

I've been on NAD for a 2 weeks now. Its meant to stimulate glutathione production - important for detoxification. Even after one dose I felt WIRED and slept a lot less. Then after 5 days of it ... totally exhausted - a week of terrible PEM. So ... NAD seems sort of promising, but clearly I'm going to have to be very gentle with finding an appropriate dose. I plan to try taking it very carefully (650 mg maybe twice a week?) and possibly work my way up if a higher dose seems more beneficial.

I wondered if anyone else has experienced this wired feeling with NAD?

Onto Methylene Blue: I've also started low dose (8 mg) maybe a couple of times a week at first, becuase I've seen so much about it e.g from dr Paul Anderson Dr Sarah Pugh (neither of whom sell it, which is encouraging) and of course here on health rising. I found a source here in the UK that seems to have a good safety profile. They supply the heavy metals batch testing certificate with every bottle via a QR code on the label. Given its pretty potent stuff, it feels a bit scary to be using it without a praticioner overseeing but since when did anyone with ME in the UK have a decent flippin' doctor to rely on!

And finally ..... I've just splurged on a red light therapy panel after pouring over this guy's you tube channel for advice on which panel to buy. Its supposed to reduce inflammation and work well in tandem with Methylene Blue ...

I'd like to hear other people's experiences with these treatments if anyone wants to share. Take care folks!

 

[Ken Lassesen]

Here's the list of items causing improvement from clinical studies (with links to the studies)

Medical Condition Cross Validation

 

[Carl#1]

I know what causes ME/Fibro and I can tell anyone who has used Methylene Blue that you can strike yet another antimicrobial off the list of antimicrobials that can be used against the pathogens which cause ME because you didn't do it correctly. I keep warning people about not doing this and no one seems to listen. Your making it harder on yourselves and you could end up with nothing to destroy the pathogens without using Efflux Pump Inhibitors and even then antimicrobials will be effectively weaker.

By the time someone listens there could be nothing left, except for herbs and many of those will also be resisted based upon what I have seen with everyone recommending this herb and that herb. "I told you so" doesn't help much if you don't have anything left to destroy them.

I will give one recommendation. Do not use ANY antimicrobials of any sort that you have not already used because at least using the same ones will not cause any further antibiotic resistance. Insist that no new antibiotics be used and don't take any herb with antimicrobial properties unless you have used it previously. The pathogens will quickly develop resistance to ANY antimicrobials of ANY type.

 

[Ken Lassesen]

One other issue is the issue of BIOFILMs that can make treatment difficult.
Here's a list of bacteria known to produce biofilms -- these bacteria should likely be a high priority (If you have them -- i.e. confirmed by microbiome testing).

Biofilm Producing Bacteria

 

[TAllen]

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."

Have you done a 24 hr adrenal saliva test? Main stream medical doesn't believe in adrenal issues but I get it done every year to make sure I'm still on track. Your adrenals control your energy level throughout the day. High in the am to wake you up and slowly decreasing through the day until you go to sleep. Then rising around midnight to wake you up again. I'd be willing to bet your circadian rhythm is flipped and the test should show that. Then you take a supplement like Cytozyme A/D to reverse it. It works for me. I use Diagnostechs and my ND provides the test kit. $90.

 

[TAllen]

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.

Genetics testing helped me a lot. A company called Genomic Insight in US. You do it through a DR/ND and you get a specific report on changes to make in your diet, drugs to take/not take and potential issues you may e predisposed to. Well worth the money as it will save you a lot on supplements you don't need.

 

[drhirsch]

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.

Welcome! Focus on removing the "Toxic 5" - the heavy metals, chemicals, molds, infections and trauma that have built up in your body over time. I have found that they are the real root causes of ME/CFS and LCovid.

 

[drhirsch]

To answer the question: "Do any medications/ supplements help?" the answer is yes, but you need to focus on the causes that you have and address each with a supplement. Everyone with ME/CFS has a combo of 20 of 38 possible causes and each needs to be address to resolve your symptoms.

 

[MtnRose]

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.

I’m a relative newbie too — diagnosed about four months ago although I’ve been ill for a year and a half. So, I don’t have as much experience as others with supplements and such but I can say that low dose naltrexone has made a world of difference for me. Brain fog has nearly cleared and energy levels are better. I haven’t felt as much myself in a long time. I also meditate every day, which calms everything down. I hope you find something that works for you!