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

[nystew]

How many people on here have tried MB and have had good results? I hate to invest in one more bottle of something. @Wayne, I admire your tenacity, so it has nothing to do with that I'm hoping that at least a few other people have tried MB. Yours, Lenora

Hi Lenora. My order us enrolled. Will let you know.
Warm regards,
Maureen

 

[nystew]

Try CTZL powder. I read about it on Healthrising.org. My order is enroute.

 

[lyran]

Is anyone taking it with LDN?

Yes, LDN and methylene blue work in different ways so you can use them together.

LDN raises beta-endorphin, met-enkephalin and dopamine levels and the first 2 are very low in many pwME (like in me). Methylene blue raises dopamine and serotonin levels, causes the mitochondria to work more efficiently and reduces oxidative stress. Both are anti-inflammatory.

I only notice a very slight and short lived cognitive boost from methylene blue and if I overdo it, I get a headache and stimulatory effects. LDN on the other hand is very beneficial for me, I am unable to function at all without it.

 

[Mary]

I've been using MB for 6 days now. I started with 2 or 3 drops (can't remember which!) and then settled for 2 drops a day. Unfortunately about day 3 or so I noticed an extra layer of fatigue which is not normally there - unrelated to exertion. And I don't know if it's a reaction of some sort to the MB - perhaps herxing? When I've herxed in the past, the chief symptom was always fatigue.

However, I also started a new type of gummy (for sleep) with Delta 8 THC (from hemp) and CBD right around the same time, and between the gummy and the MB, something is helping my sleep a lot. But unfortunately that something is also causing fatigue! I think . . . it is possible that one of those is helping with sleep and the other is causing the fatigue - arggghhh! I usually only try one new thing at a time so I know what is doing what to me, but I've never had a gummy affect me like this, I didn't think it would make a big difference.

Tonight I plan to cut the gummy in half to see (1) how well I do or don't sleep and (2) if the fatigue is less tomorrow.

Oh - and overall my BP has been lower than usual, to my surprise - coinciding with the fatigue I guess . .

 

[Wayne]

I don't know if it's a reaction of some sort to the MB - perhaps herxing?

Hi @Mary -- Yeah, I can see where it would be difficult to sort through that all. Good luck with it all! BTW, I recently started using a PEMF mat, and it has really helped my sleep quality. Unfortunately, they're pretty expensive, but the one I got has a 6-month return policy. So I'm gonna give it a go for a few months, and see if the benefits I've noticed continue.

 

[Mary]

Hi @Wayne - I saw you mention a PEMF Mat the other day and I looked them up and they are expensive! The ones I saw were around $1500, but I didn’t realize you got to use it for six months - could you post a link to what you bought?

Grounding helped my sleep, but it’s almost impossible to do where I live now because they spray the grass with pesticides and all kinds of things that I’m sure I would absorb through my feet. But I’m guessing a PEMF Mat might do something similar to grounding. I'm really glad to hear it's helping your sleep so much!

 

[Wayne]

could you post a link to what you bought?

I was discussing this over on another thread where I made about 3-4 posts. Here's a LINK to my first post on it.

 

[Mary]

Sort of an update - it (the MB) still seems to make me rather tired. I am sleeping better, but it seems to be at the expense of energy during the day. I don't know if I'm having a herx or detox reaction, or neither, maybe just a bad reaction? Although it is so nice to sleep!

@Rufous McKinney - in my research today I came across someone who said that methylene blue helped their stroke-afflicted relative (I can't remember whether husband or wife) - but anyways, the person who had the stroke started improving - their speech, word recognition and retrieval etc. was helped quite a bit. You might want to do a little research on this and see if it's something you want to give a try with your husband - I can't make a recommendation based on my experience, although I seem to be an outlier from what I read - most people seem to have a more positive experience - more energy, etc.

 

[Wayne]

Sort of an update - it (the MB) still seems to make me rather tired. I am sleeping better, but it seems to be at the expense of energy during the day. I don't know if I'm having a herx or detox reaction, or neither, maybe just a bad reaction? Although it is so nice to sleep!

Hi @Mary -- Interesting to read your update. My first thought was it may be that your "sweet spot" (dosage) may be fairly minimal. If so, I cant' help but wonder if a slightly lower dose might get you improved sleep without the extra tiredness during the day.

Also, a friend of mine once started taking an effective pain relief medication, and immediately started sleeping a LOT. When she asked the doctor about it, he said that it was quite common for people who've been sleep deprived to go through a period of time (around a month if I remember correctly) of a lot of extra sleeping to make up the sleep deficit they'd built up over time.

I wonder if it's possible the improved sleep has shifted you into some sort of new cycle, and that the extra tiredness during the day may not necessarily mean it's a bad thing. Just doing a little thinking and speculating out loud. Life and health is (almost) always a mystery!

 

[nystew]

Hi @Mary -- Interesting to read your update. My first thought was it may be that your "sweet spot" (dosage) may be fairly minimal. If so, I cant' help but wonder if a slightly lower dose might get you improved sleep without the extra tiredness during the day.

Also, a friend of mine once started taking an effective pain relief medication, and immediately started sleeping a LOT. When she asked the doctor about it, he said that it was quite common for people who've been sleep deprived to go through a period of time (around a month if I remember correctly) of a lot of extra sleeping to make up the sleep deficit they'd built up over time.

I wonder if it's possible the improved sleep has shifted you into some sort of new cycle, and that the extra tiredness during the day may not necessarily mean it's a bad thing. Just doing a little thinking and speculating out loud. Life and health is (almost) always a mystery!

Wayne I am beyond tired. My powdered shipment arrived yesterday. My sister will mix for me. I cannot remember what dose to start with. Can you help. I really want to have the positive results. Many thanks.

Mary, sorry to hear thus

 

[lyran]

Sort of an update - it (the MB) still seems to make me rather tired. I am sleeping better, but it seems to be at the expense of energy during the day. I don't know if I'm having a herx or detox reaction, or neither, maybe just a bad reaction? Although it is so nice to sleep!

Could it be because methylene blue raises serotonin levels?

 

[Mary]

Interesting to read your update. My first thought was it may be that your "sweet spot" (dosage) may be fairly minimal. If so, I cant' help but wonder if a slightly lower dose might get you improved sleep without the extra tiredness during the day.

I should have put down that 2 drops of MB saps my energy, but helps me sleep - argghhh!!! It's not fair!

As I recall, one day I went to one drop, had more energy, but then had trouble sleeping . . .

And I haven't been doing a lot of extra sleeping, just having a few good nights where I get enough sleep, which seems to count for "extra" sleeping in my world!

I wonder if it's possible the improved sleep has shifted you into some sort of new cycle, and that the extra tiredness during the day may not necessarily mean it's a bad thing. Just doing a little thinking and speculating out loud. Life and health is (almost) always a mystery!

This is what I'm trying to figure out - whether the extra fatigue (which really is affecting my life) is temporary, if I'm herxing or detoxing, or if it means it's not good for me. My muscle testing says the MB is good for me but I wish I had access to my old chiro where I used to live - he'd charge Medicare for my visits and do an adjustment, but would just slip in muscle testing on something I wanted him to check. Where I live now I'd have to pay $50 to get it tested, plus I don't think he's as good as my former chiro.

Well, I'll keep bumbling along. Today I'm trying 1 drop again. (Who needs sleep anyways??!!!)

 

[Mary]

Could it be because methylene blue raises serotonin levels?

Yeah, that could be why I sleep better with it. That part is really nice! But I really wish I knew why it made me tired at the same time --

 

[Strawberry]

I’ve decided to join this circus. I’ll try liquid first, then see if I can get the powder if it works.

 

[datadragon]

Sort of an update - it (the MB) still seems to make me rather tired. I am sleeping better, but it seems to be at the expense of energy during the day. I don't know if I'm having a herx or detox reaction, or neither, maybe just a bad reaction? Although it is so nice to sleep!. Yeah, that could be why I sleep better with it. That part is really nice! But I really wish I knew why it made me tired at the same time --

Hi @Mary -- Interesting to read your update. My first thought was it may be that your "sweet spot" (dosage) may be fairly minimal. If so, I cant' help but wonder if a slightly lower dose might get you improved sleep without the extra tiredness during the day.

Inflammation is a balance and can make you have low energy when you over inhibit inflammation too heavily as well.

Hi @Mary, it sounds like it is working but as suggested it sounded like it may need to adjust dosing to a more minimal amount, alternate days taking or take only at night where its helping with sleep are general ideas. MB also inhibits the NLRP3 inflammasome so its very anti inflammatory and normally is best taken only when inflammation levels are high for that reason. That can also help restore zinc metabolism which along with Vitamin A are involved with sleep as we discussed before in this link, as is butyrate which is also lowered as a downstream effect of chronic inflammation/infection. https://forums.phoenixrising.me/thr...-sleep-insomnia-post-links.78501/post-2442576

Another finding was that Zinc can promote non-REM sleep, whereas defective non-REM sleep responses to sleep deprivation are found in Nt5e/Cd73-KO mice involved in the regulation of purinergic signaling. as Zinc deficiency potently decreases the activities of extracellular adenine-nucleotide-hydrolyzing ectoenzymes, delaying both extracellular ATP clearance and adenosine generation. https://forums.phoenixrising.me/threads/brain-adenosine-modulation.90819/post-2443941

 

[Mary]

Hi @Mary, it sounds like it is working but as suggested it sounded like it may need to adjust dosing to a more minimal amount, alternate days taking or take only at night where its helping with sleep are general ideas.

@datadragon - I didn't even think of taking it at night - thanks for the suggestion! I am generally very leery of taking anything at night unless I know exactly how it's going to affect me. So many things when I take them at night cause severe insomnia (fish oil, lecithin, not to mention the B's of course - even B6 taken at night gives me insomnia) Anyways, yeah, I'd be afraid it would cause insomnia but that would be ideal if it helped me with sleep when taking it at night and then have the fatigue abate by the morning.

Inflammation is a balance and can make you have low energy when you over inhibit inflammation too heavily as well.

MB also inhibits the NLRP3 inflammasome so its very anti inflammatory and normally is best taken only when inflammation levels are high for that reason.

I didn't know this. I have no idea when inflammation is high. I just read about inflammation in the brain and ME/CFS and assume I have that, but who knows? When I have blood work done my CRP is always within normal limits.

You would think though that there would be more reports of fatigue with methylene blue due to over-reducing inflammation -

I have read about zinc being important for sleep and take it faithfully.

 

[nystew]

I’ve decided to join this circus. I’ll try liquid first, then see if I can get the powder if it works.

I just mixed my first vial and took my first dose.

 

[Wayne]

I didn't know this. I have no idea when inflammation is high. I just read about inflammation in the brain and ME/CFS and assume I have that, but who knows? When I have blood work done my CRP is always within normal limits.

Hi @Mary -- I was just watching a video (I think by Dr. Jockers) who said that insulin (even when functioning properly) creates a kind of inflammation when released in response to carbohydrate intake. Dr. Jockers is very much into intermittent fasting, which he believes counters this kind of inflammation.

Apparently, the available glucose in our body's reserves (glycogen) usually gets used up after about 12-14 hours of eating. It then starts using fats for energy, which eliminates the need for any kind of insulin response. So the longer a person doesn't eat after 12-14 hours, the longer their bodies get a break from insulin induced inflammation.

A quick note on dosing: When I was taking MMS (chlorine dioxide) a few years ago, many people online were talking about taking anywhere from 3-12 drops, 3x/day. It was apparently the dose used to successfully treat malaria, but almost certainly way too much for most other situations.

What I eventually learned through trial and error was that even a drop was too much for me, and I ended up starting out at 1/3, every other day. Given how sensitive your body seems to be to MB, perhaps a fraction of a drop of MB might end up being your sweet spot. At least starting out. Perhaps it would change as time goes by.

 

[Mary]

Hi @Wayne - thanks for your tips! I usually don't eat from 7:00 -p.m. the night before until 10:00 the next morning, 15 hours. That's about my limit for fasting. I do eat low carb and almost no sugar. I have a little bit of honey in a cup of tea or something and that's it. And a piece of fruit every other day or so. So I don't think insulin-related inflammation is an issue for me, though you never know!

About my MB dosing - I've found I tolerate one drop pretty well. It doesn't make me extra tired and I do sleep a bit better at night. And my muscle testing keeps telling me it's quite good for me! But I still need more help with sleep - especially after waking up at 1:00 or 2:00 - have a terrible time getting back to sleep! So I was going to do this yesterday but chickened out - but plan to use 1-1/2 drops today and see how I do with that.

Thanks for all your input! I'll let you know how today/tonight goes!

 

[datadragon]

Inflammation is a balance and can make you have low energy when you over inhibit inflammation too heavily as well.

MB also inhibits the NLRP3 inflammasome so its very anti inflammatory and normally is best taken only when inflammation levels are high for that reason.

I didn't know this. I have no idea when inflammation is high. I just read about inflammation in the brain and ME/CFS and assume I have that, but who knows? When I have blood work done my CRP is always within normal limits. You would think though that there would be more reports of fatigue with methylene blue due to over-reducing inflammation -

C-Reactive protein is one measurement of inflammation. NLRP3 activation for example would increase C-reactive protein levels. If your levels were currently within normal limits and then you further inhibited inflammation heavily you would be swinging the see saw too far in the other direction actually. 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.

Prolonged fasting suppresses mitochondrial NLRP3 inflammasome assembly and activation via SIRT3-mediated activation of superoxide dismutase 2. Twenty-four hours of fasting is known to blunt activation of the human NLRP3 inflammasome. https://www.jbc.org/article/S0021-9258(20)42986-2/fulltext So you are already lowering it there also.

About my MB dosing - I've found I tolerate one drop pretty well. It doesn't make me extra tired and I do sleep a bit better at night. And my muscle testing keeps telling me it's quite good for me! But I still need more help with sleep - especially after waking up at 1:00 or 2:00 - have a terrible time getting back to sleep! So I was going to do this yesterday but chickened out - but plan to use 1-1/2 drops today and see how I do with that.

@datadragon - I didn't even think of taking it at night - thanks for the suggestion! I am generally very leery of taking anything at night unless I know exactly how it's going to affect me. yeah, I'd be afraid it would cause insomnia but that would be ideal if it helped me with sleep when taking it at night and then have the fatigue abate by the morning.

Butyrate was found to be a bacterial-derived sleep-promoting signal while L reuteri helped a doctor to sleep through the night as mentioned in the earlier link. All of that (zinc, b6, Vitamin A, butyrate, lactobacillus for example are negatively affected as a downstream effect of inflammation/infection. Some nutrients can help you sleep better and some vitamins may actually help promote a deep and restful night of sleep, so taking these nutrients closer to nighttime may help you reap the benefits. Inflammation for many is the reason since it can cause the sleep issues it turns out as a secondary effect, but that is normally also causing more difficulty falling asleep when sleepy (zinc) (insomnia) and the lowered Vitamin A and butyrate, l reuteri etc as well as part of that. However if that is not the cause, Type II insomnia, characterized by falling asleep easily but then awakening frequently throughout the night is a classical sign of magnesium deficiency. https://forums.phoenixrising.me/threads/hawthorn-berries-helping-a-lot-with-sleep.90261/post-2437320 Otherwise, other nutrients needed for conversion of serotonin to melatonin even could come into play. In other words a person can try something like 300 micrograms (300mcg) Life extension melatonin as in that link it explains why that dose is more effective. Some use that short term and drugs and that may work fine but doesnt fix any underlying deficiency that can negatively impact many other areas. A person could then next try 5-hydroxytryptophan (5-htp). 5-HTP increases serotonin also in addition to conversion to melatonin. 5-HTP increases REM sleep by about 25%, while increasing deep sleep stages 3 and 4 without lengthening total sleep time. If that doesnt work there is likely a deficiency in the nutrients for conversion there to serotonin and melatonin. Before I found inflammation was a potential culprit which is therefore a more likely cause for many I thought any of those might be the reason. Inflammation happens to just additionally lower the zinc, b6 also needed in those conversions for example.