Methylene Blue -- The "Perfect Supplement" For ME/CFS (?)

[Hoosierfans]

Keep in mind that 6-7 drops is not a tiny dose.

The range tends to be from 60mcg (more for nootropic benefits supposedly) up to 10mg-20mg type range for anti-pathogen dosage. I felt it (not a great feeling) even at 10mcg. I'm planning to revisit it, but been trying a few other things first.

Interesting bc in the Lyme communities they are giving people 4 mg 2 x day up to 50 mg 2 x day (8-100 mg).

Given it’s mechanisms of action — anti fungal, anti bacterial, plus MAO-I effects (increasing neurotransmitters), I can imagine that plenty of folks will get side effects — die off, neurotransmitter imbalance etc. Any one of those makes you feel awful. So agree it’s better to go low and slow and find a sweet spot if there is one. 👍🏻

 

[Hoosierfans]

Very curious of the same myself, even hopeful. If it holds out, I just shaved off a good 10-20% of the fatigue and brain fog, which is not enough to get me back to work but enough to make things more tolerable, which is very helpful.

Dosage is hard for me to calculate out in mg's, but if you did the math it is probably correct.

I just put mine in a small plastic squeeze bottle with a pointy dropper top, this type is typically used in labs for reagents, I do keep it closed in a dark cabinet.

How are you doing now? Still seeing benefits?

 

[Jo86]

Just a quick piece of information:
I had these expensive mitochondrial labs done at MMD labs in Germany (sent the blood there from France) and the Prof. responsible for the tests interpreted them for me on the phone, and I mentioned many things, including MBlue, and she said "see, if MB isn't yielding any benefits when it's supposed to be a mito booster, then that means the mito are so dysfunctional and depleted they can't possibly use it for that desired effect.

 

[perchance dreamer]

Vanity question: Is anyone finding that MB stains their teeth?

My practitioner at a functional medicine clinic recently talked to me about trying MB. She said to start with 1 drop of USP pharmaceutical grade liquid in a small glass of orange juice, the juice providing the small amount of vitamin C that makes MB work better. She said to avoid taking other antioxidants around it.

I'll try it at some point, especially since the dosing of liquid can be so flexible. My system is exceedingly sensitive, so I'd start really slowly to make sure I can avoid insomnia with this. My practitioner takes it herself, twice a day, but finds it gives her insomnia if she takes her 2nd dose mid or late afternoon.

 

[Hoosierfans]

At one drop 2 x day I haven’t seen any teeth staining, and I even “swish” it around a bit to get at all the thrush I have on my mouth. I would imagine once I / we get up in doses, staining is possible.

Solutions for that: Dilute in as much water or juice as you can. I’ve also heard adding some Vit C changes the blue color. Also, use a metal or glass straw and get it to the back of your mouth, swallow quickly.

Hope it goes well! Keep us posted!

 

[Slushiefan]

How are you doing now? Still seeing benefits?

Benefits continue, it is hard to be absolutely positive. The main reason it is hard to be positive is because no treatment creates eg full remission (where I could be certain of its effects), just mild amelioration, and only of some symptoms.

I can say with certainty it is not causing me to become worse.

I typically find anything that helps at first, so far, seems to diminish over time. Typically I will run out or forget to take the treatment or supplement, and find I don't notice a change. This is not the case with MB though.

I take MB 3 times a day (taking 20 drops each time). If I miss a dose, by the next dose time I feel 'air hunger' with a some fatigue waves. In general it increases my physical stamina so I can move a bit longer before resting. I think it also helps with POTS symptoms, and by a lesser degree it seems to reduce brain fog.

The effects of MB do not seem to improve over time. Rather, it is a nice boost that helped immediately the first day I took it, and these effects do not seem to diminish as long as I keep taking it.

For background - at the same time I started MB I also added Tributyrin, and around 2 weeks later I re-balanced my B vitamins (took a blood test and supplemented where needed) and added Rinvoq. I didn't notice anything synergistic with any of these and the MB, so I don't believe the positive effects of MB require these additions.

My suggestion based on this would be: if you're thinking of adding MB, try a small dose on a day you can tolerate it if it causes an issue eg high blood pressure, etc. If there are no issues found, increase the dose as tolerated, and target splitting the dosage at 3x daily as a dose last around 8 hrs.

My best wishes for all of you.

 

[Hoosierfans]

Continuing my experiment, now doing 2 drops 2 x day. Some days I’m noticing a bit more energy, clearer mind, lightheadedness and dizziness is less. Planing on adding 1 drop to each of my doses every 3 days….so moving up VERY slowly.

One thing I have noticed — I get a really bad reaction…possibly die off or some other sort of inflammatory reaction, if I eat a higher carbohydrate day. Yesterday I treated myself to a GF donut in the afternoon…took my MB dose…and then an hour later my dizziness, lightheaded and brain fog was off the charts.

I have Candida issues which are really tough — even 3 months on no carb carnivore didn’t kill it off. Knowing that MB is anti-fungal, it seems now I have to be even MORE careful with my diet…so working back towards more of a Keri style of eating.

 

[lyran]

Oh no! Are you feeling better?



Starting my experiment w MB today. Starting at 1 drop 2 x day.

Yes, it usualy resolves by taking hydrocortisone but that doesn't help with CFS crash. When I reached 6 drops of methylene blue, my eyelid started twitching - that is an indicator that it is a stimulant and I don't do well with stimulants.

 

[lenora]

@Wayne & @Mary.....I hope neither of you has had sepsis, I didn't follow the entire thread. Dangerous business, if so.

I have high BP which is finally under control. I'm pleased with it, and don't know if I'd try MB or not. I hate to take a chance on blue teeth on top of everything else. Vanity at play here. If I had constant UTI's I'd be inclined to try cranberry supplements first. I'm glad they're under control....not very pleasant if not.

@brenda....Yes, I'd try MB for a good night's sleep. This problem is becoming worse all of the time.

@Wayne, I'll definitely read the article you mentioned. We have to try everything we can, and comments on here are something I would believe more than most sites. Thanks. Yours, Lenora

 

[Mary]

@Wayne - I'm finally going to be giving methylene blue a try. I saw a naturopath today who was sipping on her MB water as we talked - she uses 3 to 4 drops a day. She's not that familiar with ME/CFS but thought the MB might be helpful. And I remembered your posts. I think initially I was put off by the potential for dangerous spikes in blood pressure. My BP tends to run high as it is.

But I did more reading today in several of the links here and found that raising BP seems to be largely a concern if one eats or drinks foods high in tyramines - in other words, hopefully raising BP wouldn't be a concern if you're careful to avoid high tyramine foods. I love cheddar cheese, but could make do with mozarella if need be, if the MB worked well enough!

I just ordered a bottle of what my naturopath takes: https://www.amazon.com/gp/product/B09J1JRSLC/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1
and if this goes well, I'll look into possibly getting the powdered form and diluting it.

I plan to start slowwww . . . . 1 or 2 drops a day. I never know how I'll react to things and if it raises my BP, well that will be too bad. But I want to give it a try.

The naturopath also recommended this book which I also ordered (kindle version): https://www.amazon.com/Ultimate-Gui...to+methylene+blue+sloan&qid=1704324673&sr=8-1

I was able to get the kindle version for $2.99

Thanks again Wayne for all the information you've posted about this! I wish I had taken the time (and energy) to read more in-depth about MB before --

 

[JasonPerth]

Hi All

Ive found myself here as an M.E local group chat member said the following
“Has anyone tried methylene Blue as a treatment? My gp Mark Donohoe has suggested it .”

What interests me about this question is that Mark Donohoe is a leading ME GP in Australia/The World. So i wonder how he found himself telling a patient to try it.

This is new to me, how are the people above who started taking drops months ago?

Is anyone taking it with LDN?

Whats the cost of a bottle and is there any in stock? (One in amazon link above is not available)

Cheers, Jason -Perth/Australia

 

[Wayne]

I plan to start slowwww . . . . 1 or 2 drops a day.

This is new to me, how are the people above who started taking drops months ago?

Hi @Mary & @JasonPerth,

Just a little update on my dosage: I was always at the lower end of the recommended dosages, learning early on that 15 drops was too much, and then settling into about 9-12 drops/day for several months. I'm now down to about 6 drops/day. When I tried 9 drops recently, I quickly noticed the kind of headache I used to experience at 15 drops.

My best guess as to why I now have a lower "tolerance" is that my body doesn't need it as much as it did when I first started. I'll never forget how after about 2 months of regular dosing of around 12 drops/day, my more than normal occasional sinus drainage (since starting MB) went from an hour or two every few days, to a full on deluge that lasted an entire day.

That deluge had many hallmarks of a bad cold, but in the early morning when it started, I noticed I felt better than normal. I used that opportunity to try to get some organizing done, which I normally could only do for short periods of time (15 min. to an hour at most). The day of the "deluge", I worked for several hours, and seemed to gain momentum as the day progressed. I think I used up about a full box of kleenex that day! lol

My best guess on this experience is that the MB broke up some kind of (fungal?) infection in my body, quite possibly in my sinuses. And when that day was over, the excess drainage went away for good, and I no longer had occasional days where I had unusual drainage. My sinuses are now much clearer than before I started MB, which has now saved me a few dollars in my "kleenex budget". lol.

Mary, I think you're wise to approach this cautiously. The nice thing about starting out with low dosing, is there's really no need or urgency to try to start out at too high a dosage. I once read that less MB is more effective than more MB, and I think that's likely accurate. The goal is to slowly find the optimal, neither too much or too little. And that may change over time, as it did for me. I've also read recommendations to skip a day or two each week, and let your body reset however it needs to without the daily MB.

Jason, I checked the links I posted in one of my earlier posts for MB products online and discovered they still work, and thought I'd paste them below. I don't know if you have access to these in Australia, but you might. Good luck to both of you (and anybody else) as you give this a try!

I initially purchased a 3.5 oz. 1% solution bottle at Amazon, but you can also buy it for much less if you get the powder (same company) and dilute it with purified water. The ratio is 1 gram of the powder to 100 ml. (about 3.5 oz.) of water. The exact ratio is not really important, and some people like to make it both stronger and weaker than the above ratio. The 1 gram to 100 ml. ratio is the most commonly used however.

The above linked products are pharmaceutical grade (USP), which is what they recommend for taking it internally. There are other less pure grades out there for fish tanks and laboratory use.

 

[nystew]

I'm building up the nerve to take my BP and hope to do it tomorrow.

Please keep us updated. Good luck. I am waiting for LDN and this sounds so much more promising. I've heard Dr Mercola speak of it. Also, where did you purchase? Powered or liquid.

 

[hapl808]

Does methylene blue 'go bad' if stored in a glass container? I have some I diluted months ago, but moved onto other things for the moment.

 

[Slushiefan]

Still taking MB here @ 20 drops x3 or 60 drops daily.

I pulled back to no MB a few months ago because I was getting extreme sweating and hot flashes when eating, having a conversation, and occasionally for just no reason at all, along with high BP.

I have since discovered the hot flashes were due to prednisone combined with MB, prednisone I had been taking for a few years now @ 10mg daily.

As I began reducing the prednisone, I found I was able to reintroduce MB w/o hot flashes or too high of BP. If you find your having these after starting MB I recommend considering other causes and the possibility of removing/adjusting those as an alternative to removing the MB.

MB is possibly the most effective tool in my toolbox atm that helps with energy. It is not making me normal by any stretch, but it does help a good deal.

 

[Slushiefan]

Does methylene blue 'go bad' if stored in a glass container? I have some I diluted months ago, but moved onto other things for the moment.

I don’t think it would go bad as long as it was kept in a dark place, like a cabinet.

Apparently light breaks down the MB molecules.

 

[Slushiefan]

My best guess on this experience is that the MB broke up some kind of (fungal?) infection in my body, quite possibly in my sinuses. And when that day was over, the excess drainage went away for good, and I no longer had occasional days where I had unusual drainage. My sinuses are now much clearer than before I started MB, which has now saved me a few dollars in my "kleenex budget". lol.

My son and I both came down with the same cold. I got over it in 4 days on MB. My son spent 3-4 weeks recovering.

 

[hapl808]

I don’t think it would go bad as long as it was kept in a dark place, like a cabinet.

Apparently light breaks down the MB molecules.

It's on a countertop, but not in direct light. Well, sounds like strength might decrease from light exposure, but unlikely to 'go bad' I guess.

 

[brenda]

Please keep us updated. Good luck. I am waiting for LDN and this sounds so much more promising. I've heard Dr Mercola speak of it. Also, where did you purchase? Powered or liquid.

I have been trying to cope with a dental crisis and have put returning to MB for now. I have liquid. Forgot where it came from but here is one:

https://www.fishersci.co.uk/shop/products/methylene-blue-pure-certified/10455081

 

[Katt]

I've been interested in MB for awhile now and finally got around to trying it out.

I was concerned that it might make me feel worse because it supposdly lowers nitric oxide which I seem to naturally be low in and frequently take L-Citrulline to help with that. However, I did not seem to experience any negative side effects from the MB.

It's hard for me to say for sure if I experienced any positive effects from the MB. I did seem to have slightly more energy but then 2 weeks into my experiment I caught a bad cold and was so miserable that I stopped taking the MB on a regular basis simply because it was too much to remember on top of all my cold meds.

But now that I'm recovered I'm going to give it a shot again. I had worked my way up to at max 15 drops a day divided into 2 doses. I read that takng too much is actually bad for the mitochondria so a low dose is better, however it's hard to tell what is a low vs high dose. This states that it is safe in doses less than 2mg/kg https://www.ncbi.nlm.nih.gov/books/NBK557593/ - but I don't plan on getting close to that. The highest I'm willing to try is 20 drops a day (about 20mg). Just took my first dose today and will keep taking it for a full month and see how it goes. If anything interesting happens I will post an update!

I should add that I also recently started increasing my vitamin b12 dosage, so it might be hard to tell which benefits are from the b12 and which are from MB, assuming I get any benefits. I know that doesn't make for the best experiment but I was very curious to see if the two might boost each other.