Methylene blue aggravating MCAS or herx?

Hi everyone!

Just recently posted about my great pain relief from osteopathic manipulation and I'm now back to being in pain all the time - but I think if I hadn't changed my regimen, I'd be okay, so I stand by my suggestion of giving osteo a try! My neck was amazing for a while there and I can visibly tell that my range of motion is better.

Anyway, I started methylene blue around June 24. Usually with MCAS I will know pretty quick if I don't tolerate something, but occasionally I have slowly increasing reactivity that takes me off guard like this.

Slowly but surely I've noticed some increased constipation (usually controlled well by prescription motility agents), increased tingling in all of my limbs, more hives than usual (like, 3 in the last week compared to getting them rarely once every few months), increased bloating, brain fog. I have some symptoms around the clock, but most notably, I am getting terrible reactions to eating. Doesn't seem to matter what I eat, I get muscle weakness, neck pain, tingling, and brain fog and for a good hour after, I'm laying in agony on my bed.

I'm only on 10mg of methylene blue, but this has been the biggest change in my regimen lately. The distinct link to my eating patterns makes me worry that it's my MCAS getting worse for some reason. But I'm wondering, if it's maybe killing bartonella in the GI tract, maybe that's why my mast cells are angry? Could the worsening of MCAS be a downstream side effect of a herx?

I'm also curious, what have others experiences of herxing from MB been? Is it common with this med? Delayed? I am on such a low dose, I didn't such expect a strong reaction.

i have been taking methylene blue for a while now - i have lyme and bartonella

many people with bartonella find they are very sensitive to methylene blue - even at the doses you mention
and even though they are stable on whatever regime they were on before hand - they get strong herx like reactions from it when adding MB at even low doses ( many cases of this experience are recounted on the FB MB for bartonella group )

i am what i would consider moderately sensitive to treatment - no overt MCAS - but i typically have to go slow when introducing new treatments - and this happened to me with MB

i was treating lyme/bart with mainly herbs - was stable - making very gradual improvements - then added MB at only around 15mg a day and had pretty significant herx like reactions - and had to go very slowly from there - increasing by a small step only each 3-4 weeks.

i dont think we know if this is because it is simply killing or weakening bartonella ( or other infections ) in ways that other treatments were not - thereby causing more herx reactions and thereby increased symptoms in the same way that most treatments do
or
if it is somehow "waking up dormant bacteria" and making them more aggressive - as i don't think its possible to know from symptoms alone.

either way i think MB synergises with other bart treatments well - there are studies confirming this effect with some antibiotic classes like rifamycin's and macrolides

i would agree with Quin that single antimicrobial treatments for chronic bartonella are not generally a good idea as bartonella is known to be able to form resistance to single antimicrobials over time. this is not to say it always will - or that a few weeks of a single antimicrobial are likely to cause antimicrobial resistance.
more that a longer term antimicrobial treatment plan targeting bartonella should really include 2 or more antimicrobial agents to reduce this risk.

if you have MCAS reactions issues - its probably to be expected that any herx like reaction is likely to stimulate that to some degree.
generally MCAS treatments are needed to try to quell those reactions enough to make antimicrobial treatment possible.

there are people here with a good deal of experience in MCAS treatments - a separate thread on that might be the best way to get input on this

Also, good to know about low dose methylene blue. My LLND said she has been preferring the low dose and seeing people get improvement but my LLMD was going with the more standard dose of 25mg twice a day, so I might give the higher dose a try if this settles down to see if that helps more.

Unfortunately, as I found out, bartonella can become resistant to clarithromycin and rifampin.

Clarithromycin and rifampin were the first two drugs I tried. It did not work.

I have nothing to offer on the antibiotics front, but I have a suggestion on the MCAS front. Have you tried taking oral cromolyn sodium before you eat? The symptoms you describe are basically what it's for. It's a liquid you drink twenty minutes before meals. It will calm the mast cells that line your GI your tract, so you won't react to foods or to the act of eating. Hope you find something that's helpful!