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

[Mary]

@datadragon - I don't know of any way to measure inflammation. It seems to be all guess work. I've been taking 5-htp for over 20 years. It helped a fair amount with sleep when I first started taking it. I've stopped taking it since I started the methylene blue because everything I read says to not take SSRIs or 5-htp etc., anything that can increase serotonin, with methylene blue, because of the possibility of serotonin syndrome.

I tried taking B6 at night and it gave me insomnia. I tried taking butyrate at night and it gave me insomnia.

The majority of ME/CFS who have PEM CURRENTLY and not bedbound in a later stage should have increased inflammation and some may further have some chronic inflammation or uncleared infection adding to that, due to a dysregulated immune response so they may need a bit more to bring it down.

I'm not bedbound and I don't have PEM all the time. I only have PEM when I have overdone it - gone beyond my tolerable roughly 4 hours a day of light activity. Again, I have no way of measuring inflammation so I don't know if I have chronic inflammation.

So I don't know what to do with all the information you have provided. I know B6 is supposed to help with sleep, except for those people for whom it causes insomnia, when taken in the evening. I do take it in the morning.

The MB did help with sleep and when I took 2 drops a day, my sleep was pretty good, though my energy was bad. With 1 drop I felt pretty good energy-wise, and slept halfway decently part of the night.

So today I'm trying 1.5 drops of MB and crossing my fingers about tonight!

You're providing a lot of good information but I don't know how to translate it into something useable for me.

 

[lenora]

HI @Mary.....Thanks for the information. I was wondering when you took your dose(s) of MB?

I've been taking my vitamins/supplements earlier in the day, in the A.M., at least the ones I think may interfere with my sleep. After 4 nights, it seems to be helping, so it may help others to take them earlier. Aren't we always adjusting one thing or the other?

 

[Mary]

I was wondering when you took your dose(s) of MB?

Hi @lenora - I put one drop in a large glass of water and drank it during the morning, and then put another drop in a large glass of water and am drinking it this afternoon, almost done. It doesn't seem to be making me as tired as it initially did, and hoping I sleep better tonight. I still had trouble sleeping last night on 1.5 drops so am hoping the 2 drops might work better . . .

I've been taking my vitamins/supplements earlier in the day, in the A.M., at least the ones I think may interfere with my sleep. After 4 nights, it seems to be helping, so it may help others to take them earlier.

Yes, I've found that the times I take my supplements is VERY important. At one time I took fish oil at night - a big mistake, it kept me awake, but I do okay with it in the a.m. or no later than lunch. So I'm very careful about what I take at night - If something has the potential to cause insomnia, it's a guarantee that it will for me!

Aren't we always adjusting one thing or the other?

Yes we are! And I'm near-constantly experimenting too! I'll find something that helps with sleep, until it doesn't any more and then I have to find something else . . .

Are you going to try methylene blue? I'd suggest starting with one drop, taken in the morning and see how you do.

 

[lenora]

Hello @Mary. Thanks for the information. As you can tell, I'm up again all night, so yes, MB is my next step.

I'll do as you suggest and start with one drop in the a.m. and will take baby steps in increasing it...if necessary. You're right. We do seem to peak out on what is helping....and it doesn't take long for that to occur with many substances. Sleep....the lost, elusive dream. Hope you're doing OK, at the very least. Yours, Lenora

 

[Mary]

Hello @Mary. Thanks for the information. As you can tell, I'm up again all night, so yes, MB is my next step.

I'll do as you suggest and start with one drop in the a.m. and will take baby steps in increasing it...if necessary. You're right. We do seem to peak out on what is helping....and it doesn't take long for that to occur with many substances. Sleep....the lost, elusive dream. Hope you're doing OK, at the very least. Yours, Lenora

Hi @lenora - unfortunately, I was up all night too! I took 2 drops yesterday, one in the a.m. and one in the afternoon (in a large glass of water each time). It no longer makes me tired and I think gives me a little more energy - BUT - I couldn't sleep last night, at all! This is maddening. I know you have severe sleep problems, mine are bad though not generally as bad as you - anyways, I hope the MB does not make your sleep even worse (if that's even possible!)

So I'm skipping it today. I guess it mainly helped me with sleep when it initially made me so tired. And now that it seems to be perking me up, it's destroying my sleep. I wonder if this has happened to anyone else - @Wayne , have you heard of MB interfering with sleep?

 

[Wayne]

Sleep....the lost, elusive dream.

@Wayne , have you heard of MB interfering with sleep?

When I was taking my highest dosages of 12-15 drops/day, I did notice a bit of insomnia and a "coffee-like feeling". But it quickly went away when I lowered my dosage back down to 9 drops/day. I'm now at about 6 drops/day, and occasionally skip some days.

Regarding sleep, the PEMF mat I just purchased has made a big difference in my sleep quality and quantity--in addition to helping me get to sleep to begin with (which is often a fairly big obstacle). I'm continuing to do research on PEMF, and am continually running across references to improved sleep.

One video on YouTube I watched last night was an interview with a man who is with a company that sells a variety of PEMF machines, from very basic to quite sophisticated (with Rife frequencies). His company name is: PEMF Supply, where you can watch some videos, check out some testimonials, and the variety of products they have.

Sounds like a person can "maybe" get a basic model that might help with sleep for around $500 or so if you look around enough. I think most PEMF products have a 90-day return policy on them. The strength of the magnetic fields they generate appears to be the main variable between the lower and higher priced products. I'm hoping to get more specifics on that today.

 

[hapl808]

Regarding sleep, the PEMF mat I just purchased has made a big difference in my sleep quality and quantity--in addition to helping me get to sleep to begin with (which is often a fairly big obstacle). I'm continuing to do research on PEMF, and am continually running across references to improved sleep.

One video on YouTube I watched last night was an interview with a man who is with a company that sells a variety of PEMF machines, from very basic to quite sophisticated (with Rife frequencies). His company name is: PEMF Supply, where you can watch some videos, check out some testimonials, and the variety of products they have.

Sounds like a person can "maybe" get a basic model that might help with sleep for around $500 or so if you look around enough. I think most PEMF products have a 90-day return policy on them. The strength of the magnetic fields they generate appears to be the main variable between the lower and higher priced products. I'm hoping to get more specifics on that today.

All seems so crazy. I do find my headaches are less when I don't use wifi, but what benefits have you noticed with PEMF mats? So expensive, and seems a bit predatory (considering the technology). Has it changed your physical limits? My sleep is 'fine', other than the fact that it's completely not restful and after sleeping eight hours, I wake up feeling just as bad as when I went to sleep. Do you have any metrics - like wearable numbers?

 

[Wayne]

Has it changed your physical limits? My sleep is 'fine', other than the fact that it's completely not restful and after sleeping eight hours, I wake up feeling just as bad as when I went to sleep. Do you have any metrics - like wearable numbers?

Hey @hapl808 -- Your sleep is "fine", except for it being "completely unrestful"... I hope you don't mind that I got a bit of a chuckle out your description of your "fine" sleep. lol

Here's a brief rundown on my PEMF experiences so far. I do a daily regimen of energy balancing, massage, and acupressure techniques. So I'm quite attuned to how my body is doing on a day to day basis. The night after doing my first PEMF session, my sleep was noticeably better. When I did my techniques the next day, I had noticeably less pain in some of my tender areas, such as around the TMJ and neck areas. I also noticed the muscles all over my body felt different, as in less tight, and more malleable.

I also noticed I felt more grounded. My brain was calmer, and functioning better than normal. Part of that was likely a result of the better sleep, but I think it was even more than that. I've now learned that in 2003, the FDA approved PEMF therapy for "drug-resistant" depression. I couldn't help but be impressed by that. But it also made me reflect on our drug first culture, where antidepressant drugs aren't approved for PEMF-resistant depression.

I then ran across a very interesting tidbit on how magnetic fields can affect brain function and depression. I can't help but think it could be helpful for some of the dysfunctional brain function so often experienced by pw/ME/CFS. Here's that tidbit. It actually struck me as being a little "wild"..

"In a February 2004 Science and Society article, Marianne Szegedy-Maszak reported that severely depressed patients who were taking pharmaceutical drugs for treatment and underwent brain evaluation with MRI machines actually ended up experiencing dramatic improvement in their depression from the MRI machine itself. ​

​

A patient who had been so depressed she could barely speak became ebullient after the 45-minute brain scan. Then a second patient, who seemed incapable of even a wan smile, emerged actually telling jokes. The article concludes that in theory, since the brain itself is an electromagnetic organ, stimulation with electromagnetic energy appears to be beneficial in depression and possibly other illnesses such as Schizophrenia and Obsessive Compulsive Disorder..."​

 

[lenora]

As usual, so much of this is how we're affected individually.

Years ago, I tried a very heavy mattress with a cover that had magnets inserted. Nope, no go, but I kept it for a month or so just to be sure. That was then, of course, so perhaps improvements have been made.

@Mary....I think my basic problem is just what I've been told: There has been damage to the sleep center close to the brain. I also started all of this off with a pituitary tumor, there may still be some interplay. Still, this no sleep thing is a bit hard to take. I could exercise all day long and it simply wouldn't matter. I just can't shut off whatever the cause is. I'm glad that my husband sleeps and I marvel at this simple thing.

I'm really sorry that MB wasn't the answer to you dreams....perhaps give it another try at a lower dose. Post menopause affects sleep in a lot of women (and I don't know if you're there yet or not). To be honest, I've tried so many things over the years and as you found out, they may work for one night, but certainly not beyond that. It seems that good sleep is difficult for so many people, not just our group. Yours, Lenora

 

[forestglip]

I'm interested in trying this, but of course it has the dumb side effect of permanently staining toilets. I have a job so I'm often going in business bathrooms. I can't be going around coloring their porcelain.

 

[Wayne]

I'm continuing to do research on PEMF, and am continually running across references to improved sleep.

Ran across a good 10-video on PEMF. This LINK goes to a reference in the video on remarkable success using PEMF for insomnia. Here's a LINK to a reference in the same video to 100% of people with scalp psoriasis having it clear up with PEMF. Pretty amazing data!

 

[datadragon]

@Wayne,

Far infrared radiation (as found in PEMF mat from what I read) inhibited both the NLRP3 inflammasome and the production of IL-1β in lipopolysaccharide-activated THP-1 macrophages. https://pubmed.ncbi.nlm.nih.gov/26864306/

So it has similar mechanism as methylene blue of inhibiting the NLRP3 inflammasome which also is working for you. NLRP3 activation is one thing that leads to pro inflammatory cytokines which sequester zinc into the cell, then reducing its uptake /absorption as well in the gut. So lowering NLPR3 is beneficial to help reverse that process as zinc is involved in numerous downstream effects. This is where some of the thoughts were of using zinc amino acids that can bypass at least the uptake problems to some degree + nlrp3/er stress inhibitors in combination. Betaine HCL was also interesting as I had found research that showed that mechanistically betaine (hcl) inhibits nuclear factor-κB (NF-kB) activity and NLRP3 inflammasome activation, regulates energy metabolism, and mitigates endoplasmic reticulum stress and apoptosis. https://forums.phoenixrising.me/threads/betaine-inhibits-nlrp3-inflammasome-activation.90510/ Betaine HCL also promotes stomach acid, and stomach acid is required to absorb nutrients including zinc, while zinc is involved in making stomach acid so it can be low eventually.

There are many forms otherwise of zinc. https://www.onedaymd.com/2021/03/types-zinc-supplementation-absorption.html The research to me was suggesting for ME/CFS supplementation more along the lines of only the chelated zinc/zinc amino acids complexes first (when inflammation is testing high) https://pubmed.ncbi.nlm.nih.gov/28717982/

 

[Judee]

Have to come back and get up to date on this thread but I wanted to post something I read in one of my FB groups and unfortunately, I don't know what there poster's source nor do I understand what "cytochromes" are.

Still I thought it might be important information to share because sometimes things that improve us and get things functioning in the body better also seem to start using up nutrients at the same time. (Maybe that's why some things stop working for us. ??)

FB quote, "Over time MB will make demands on your Copper and Iron stores as Cytochromes are stimulated to be produced so long-term expect to be getting enough of those from diet."

And I really like the idea of trying to get them from our diet because sometimes supplements (esp some of the trace minerals) can be taken in too high of a dose and cause toxicity which we don't want either.

 

[Judee]

A question for anyone: If you have Reynaud's has MB helped with that? (Also feeling cold a lot of the time?)

My Reynaud's keeps getting worse every year. This year instead of just white fingers (and toes), my fingers started to turn purple.

Also a note about staining but I've read that vitamin c can be taken concurrently to stop/neutralize the blue staining. Somewhere I even read that if you've spilled some it can be used for clean up. Not sure if that's accurate because I am still researching all this.

 

[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.

Updating now that I have been on MB for a little over a month. I must have been having some brain fog when I wrote that first post because I got the dosage wrong! 15 drops was NOT 15mg, it was just 7.5mg. So it look like I was taking much lower doses than I thought at first. That in retrospect makes sence as to why I was able to take MB and Wellbutrin on the same day and not feel over stimulated.

This past month however I upped my MB dosage to 20 drops/10mg 1-2 times a day depending on how I was feeling. I take Wellbutrin on an as needed basis and I did take that plus the MB for a couple days in a row when I was having my period. I typically feel pretty tierd and depressed right before my period and the MB did seem to help with that.

I did not experience anything that I would consider a negative effect. If you don't want blue teeth temporarily just get a straw. However, some people might be concerned about lead or other heavy metal exposure, so I would suggest buying from a place that is willing to give you a COA (certificate of analysis) of their product.

It could be a coincidence but I did notice that I have had to take less anti-inflammitory medication while taking the MB. It's not a miracle drug but it sure does feel helpful for getting through the day. Overall seems like a very safe drug to try as long as you go slow and start low.

 

[Wayne]

However, some people might be concerned about lead or other heavy metal exposure, so I would suggest buying from a place that is willing to give you a COA (certificate of analysis) of their product.

Hi @Katt,

Thanks for your update. It seems like your experiences are similar to mine, in that it feels helpful for "getting through the day". Regarding your suggestion about getting a COA for any MB product, I just discovered what appears to be a new MB product on Amazon.

I was impressed not only that they provide a COA, but have a complete kit so that you can easily mix the powder with the six individual bottles that are part of the package. They make it very easy (watch video), and have it available at a very good price ($48.99 for 6 100 ml. bottles).

That's only about $9.00 per bottle with tax. I decided to go ahead and order it, so will report back after I get it next week. For now, I would recommend anybody searching for a quality MB product to check it out.

 

[Wayne]

I got the new MB product on Amazon "kit" in the mail today, and even though I haven't yet mixed water with the powder (1 gram of MB powder already in each of the 6 bottles), I have to say I'm incredibly impressed with this product. It just exudes quality, and includes everything needed to make the mixing and use of this MB very easy.

One tiny quibble I have is that they only included one "measuring dropper" for all six bottles. So I can't really give a bottle as a gift, because I can't include a dropper with the bottle. I guess they just assume that when you get done with one bottle, you will just transfer the dropper to the next bottle. -- I was reviewing some of the ratings on Amazon, and one guy (who was also very impressed with this product), left the following comment:

"I actually contacted this company directly and they're willing to sell 10 G, 50 g, or 100 G bulk pricing for what I thought was an absolutely excellent price. I bought this kit and now I'm just going to reuse the bottles and buy bulk methylene blue Powder directly from Quantum Innovation labs."​

​

I thought the price of the kit was excellent to begin with, and am super happy to hear that a person can purchase bulk quantities for an even (much) better price. -- I also visited their website Quantum Innovations Labs, and discovered the following on the link, "Our Story".

"Quantum Innovation Labs arose from the frustration of the current market’s absence of genuine USP-grade Methylene blue powder. Our pursuit of this premium product revealed that brands labeled as USP grade often fell short, being nothing more than a low-quality imitation, undeserving of the USP mark. This frustration was compounded by the lack of a straightforward method for converting Methylene blue powder into a solution without the potential for mess. As you may know, working with Methylene Blue powder can result in a messy experience.​

​

Recognizing the potential of MB, our mission became clear: to locate the highest quality premium pharmaceutical-grade methylene blue available. Following numerous months of relentless efforts, we are confident that we have finally identified what we were searching for – Ultra-pure MB powder that adheres to current USP grade standards, as stipulated by the present USP monograph guidelines.​

​

Quantum Innovation Labs aspired for more than what we considered the highest quality USP grade Methylene Blue available. We were committed to formulating a strategy to deliver this product with precise accuracy, all while ensuring convenience and reducing the potential for any mess.​

​

As we went about our usual routine, preparing the 1% Methylene Blue solution was just another task on the list. We removed some powder from its original vial, measured 1 gram, poured it into a bigger vial, added distilled water, and mixed everything. But on that day, something unexpected happened. A bit of the powder missed the mark and landed on the table, leaving a vivid blue stain. From across the room, a voice exclaimed. “It would be so much more convenient if the powder came in a larger vial; then, we wouldn’t have to transfer this messy powder.” In an instant, we exchanged knowing glances. And at that moment, the vision of the Methylene blue kit was born."​

​

I could absolutely relate to them mentioning they spent "numerous months of relentless efforts" researching and searching for an ultra-pure MB powder. I embarked on this very same endeavor shortly after I first discovered MB about a year ago, scouring the internet for probably hours.

I contacted various suppliers, and got very little practical assistance in my quest to find a high quality product. It now appears to me this company followed the kind of research I was doing to the every end, and came up with the kind of quality MB powder I had diligently tried to find, but finally gave up.

Unless something changes, it appears I've found the quality and economical MB product I looked for and kept an eye open for for the past year. Yay!

 

[hapl808]

Unless something changes, it appears I've found the quality and economical MB product I looked for and kept an eye open for for the past year. Yay!

That's great. Please let us know how you respond to it over time.

 

[Katt]

I got the new MB product on Amazon "kit" in the mail today, and even though I haven't yet mixed water with the powder (1 gram of MB powder already in each of the 6 bottles), I have to say I'm incredibly impressed with this product. It just exudes quality, and includes everything needed to make the mixing and use of this MB very easy.

One tiny quibble I have is that they only included one "measuring dropper" for all six bottles. So I can't really give a bottle as a gift, because I can't include a dropper with the bottle. I guess they just assume that when you get done with one bottle, you will just transfer the dropper to the next bottle. -- I was reviewing some of the ratings on Amazon, and one guy (who was also very impressed with this product), left the following comment:

"I actually contacted this company directly and they're willing to sell 10 G, 50 g, or 100 G bulk pricing for what I thought was an absolutely excellent price. I bought this kit and now I'm just going to reuse the bottles and buy bulk methylene blue Powder directly from Quantum Innovation labs."​

​

I thought the price of the kit was excellent to begin with, and am super happy to hear that a person can purchase bulk quantities for an even (much) better price. -- I also visited their website Quantum Innovations Labs, and discovered the following on the link, "Our Story".

"Quantum Innovation Labs arose from the frustration of the current market’s absence of genuine USP-grade Methylene blue powder. Our pursuit of this premium product revealed that brands labeled as USP grade often fell short, being nothing more than a low-quality imitation, undeserving of the USP mark. This frustration was compounded by the lack of a straightforward method for converting Methylene blue powder into a solution without the potential for mess. As you may know, working with Methylene Blue powder can result in a messy experience.​

​

Recognizing the potential of MB, our mission became clear: to locate the highest quality premium pharmaceutical-grade methylene blue available. Following numerous months of relentless efforts, we are confident that we have finally identified what we were searching for – Ultra-pure MB powder that adheres to current USP grade standards, as stipulated by the present USP monograph guidelines.​

​

Quantum Innovation Labs aspired for more than what we considered the highest quality USP grade Methylene Blue available. We were committed to formulating a strategy to deliver this product with precise accuracy, all while ensuring convenience and reducing the potential for any mess.​

​

As we went about our usual routine, preparing the 1% Methylene Blue solution was just another task on the list. We removed some powder from its original vial, measured 1 gram, poured it into a bigger vial, added distilled water, and mixed everything. But on that day, something unexpected happened. A bit of the powder missed the mark and landed on the table, leaving a vivid blue stain. From across the room, a voice exclaimed. “It would be so much more convenient if the powder came in a larger vial; then, we wouldn’t have to transfer this messy powder.” In an instant, we exchanged knowing glances. And at that moment, the vision of the Methylene blue kit was born."​

​

I could absolutely relate to them mentioning they spent "numerous months of relentless efforts" researching and searching for an ultra-pure MB powder. I embarked on this very same endeavor shortly after I first discovered MB about a year ago, scouring the internet for probably hours.

I contacted various suppliers, and got very little practical assistance in my quest to find a high quality product. It now appears to me this company followed the kind of research I was doing to the every end, and came up with the kind of quality MB powder I had diligently tried to find, but finally gave up.

Unless something changes, it appears I've found the quality and economical MB product I looked for and kept an eye open for for the past year. Yay!

That company looks kinda sketchy to me. For one thing their website makes outrageous, unscientific claims about what MB can do. There's zero evidence that it prevents aging.

Plus the COA they posted doesn't even look like a real 3rd party document. COA's are written by the lab that does them and has the lab's information clearly available. What they posted just appears to be a marketing document. Plus they only list the amount of copper and arsenic, what about other metals? Did they not test for them or were they bellow the limits of detection?

I'm not going to advertise the brand I purchased but they posted a full COA and had much lower levels of arsenic. For something that I'm putting in my body I'd rather pay a little more over time to know that I'm safe.

Plus it's really not hard to measure out liquid and put powder in a bottle if you want to mix your own. Buying a decent stainless steel funnel is really cheap and fixes the problem.

 

[Judee]

Kind of an interesting study on MB: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7444404/

I'm not sure where I read it lately but there was a post somewhere about some doctors thinking with this disease is a kind of sepsis and maybe another where some actually think we make too much nitric oxide. ??