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Dr. J in DC using Methylene Blue ?

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Posted 9/21/2019 12:24 AM (GMT 0)
Does anyone know if Dr. J in DC is testing out methylene blue in his patients?
Posted 9/21/2019 1:02 AM (GMT 0)
How is the Disulfiram going Rikky? Do you feel that Bartonella is getting worse while on it?
Posted 9/21/2019 2:06 AM (GMT 0)
i'm almost 3 weeks in been at 250mg daily for about a week. besides an initial surge in symptoms (which is promising cause that's what some abx's did) all i'm left with is a lingering head nervey thing. doesn't seem to be doing much for my ongoing nerve issues.

there's been some recent chatter on the FB DSF board and 90% of the folks are saying its not doing anything against their bart. i believe most are doing monotherapy.

one theory is to use DSF in combination with abx as its believed to make the bacteria weaker via DSF then abx is more effective. this is pure conjecture as they don't even know DSF's mechanism of action against lyme or malaria.
Posted 9/21/2019 2:35 AM (GMT 0)
Sounds like you're tolerating it pretty well.

I'm 4 doses in: 125mg every 3 days. I definitely get strong neuro herxes from it. I have had windows of feeling really mentally clear around 3 days after taking the last dose so encouraging signs.

I have had a flare of seemingly Bart symptoms that I don't really remember having before. Calf pain and jabbing, foot / hand tingling and numbness. Starting taking Berberine but not sure if that's gonna be enough.

People seem to be talking about Methylene Blue for Bart. However I'm already on Emeramide and Disulfiram. Not sure how many more experimental treatments I want to layer on at this point..
Posted 9/21/2019 2:53 AM (GMT 0)
DSF isn’t doing much for me because I’m pretty sure I got rid of my Lyme a while ago and still some traces of babesia duncani but I beat that up pretty good over the years.

I was hoping it would help with my bart and at the very least clear out the last of the Babs.

I plan on getting to 500mg daily in a week or two and do 8 weeks at that dose and be done. That should be long enough.

I’ve been reading about methylene blue as well. Wouldn’t add it to DSF but could be a potent combo given what they both supposedly do.

There’s either thought or some research behind DSF having great permeability so maybe the MB can take advantage of that.

I’ll definitely have it on my list next as I’m basically out of Bart treatment options have exhausted them all over the years.
Posted 9/21/2019 4:51 AM (GMT 0)
Reading more about MB it seems to be a nootropic as well, pretty interesting.

So you think your remaining symptoms are mainly Bart at this point? I had always thought that Bart was more opportunistic due to immune suppression from Borrelia and Babesia. But did occasionally hear people saying their Bart was the worst of the 3 to eliminate.
Posted 9/21/2019 5:26 AM (GMT 0)
You ever tried gallium nitrate? Heard some patients have had success treating tough bart cases with that one as well (methylene blue as well plus has the zhang in vitro study suggesting effectiveness). Both those agents have facebook groups (gallium nitrate for bart and methylene blue for bart)
Posted 9/21/2019 9:29 AM (GMT 0)
Did Dr. J prescribe you DSF Rikky? I just had my face to face with him last week.
Posted 9/21/2019 10:34 AM (GMT 0)
I haven’t seen Dr. J in about a year basically last time i saw him he was out of ideas. I asked in another post if anyone knows if he’s doing MB.

I’ve taken boatloads of abx from him and I’m not doing it anymore as it’s proven not to be effective for me.
Posted 9/21/2019 10:37 AM (GMT 0)

project said...
So you think your remaining symptoms are mainly Bart at this point?

Bart has always been the main driver of my nerve issues. I basically got rid of Babs/Lyme symptoms 6-9 months into treatment it’s all Bart.

Bart is also an immunosuppressive bug hence why many can’t shake it even with no other pathogenic load.

In my travels Bart is the main stubborn infection the others are the co’s
Posted 9/21/2019 1:22 PM (GMT 0)
On paper it’s easy to recognize Bart symptoms but I still find it very hard to differentiate between the infections. When My daughter started mepron, she had drenching sweats but her nerve pain also exploded just due to the inflammation. How do you know what is what? When you say your babesia and Lyme are under control, what is left that makes you sure it’s Bart?
We don’t see Dr J but hopefully others will be along to answer your question about methylene blue.
Posted 9/21/2019 2:02 PM (GMT 0)
Nerves are a tricky one many infections cause issues in this area Bart and Lyme being the most advertised but Babs absolutely causes it as well.
Posted 11/21/2019 5:45 PM (GMT 0)

Rikky1 said...
one theory is to use DSF in combination with abx as its believed to make the bacteria weaker via DSF then abx is more effective. this is pure conjecture as they don't even know DSF's mechanism of action against lyme or malaria.

Although I did not try methylene blue, this was definitely my experience with other antibiotics. Sodium valproate alone just made my bartonella flare up. Minocycline alone did not kill bartonella effectively. Sodium valproate plus minocycline caused a major herx and actually killed the bartonella. Although I haven't been taking it as long, disulfiram plus minocycline also seems to work.

As for the mechanism of action, disulfiram is known to form a metal ion complex similar to valproic acid. This seems likely to be the mechanism, as I found that disulfiram had a similar effect on bartonella as valproate.
Posted 11/21/2019 6:27 PM (GMT 0)

JovaLyme said...
I tried methylene blue alongside disulfiram and it definitely worsened my neuro symptoms, but I've no idea which infection is causing them.

My symptoms are nearly all neurological now and without knowing which infection to target I feel a bit stumped at this point. I certainly don't feel any better at all after 4 weeks of disulfiram. If anything I feel a lot worse, so I would say it hasn't hit whatever infection is causing the neuro symptoms whatsoever.

I've seen it mentioned on this thread that bartonella suppresses the immune system. Is that confirmed as true? My Armin Labs results show immune suppression, but the comments say this could be due to an infection such as mycoplasma. This is just infuriating as I am having to treat this myself without having a clue what infection to target or if there is even any active infection still present. I'm beginning to wonder if the original infections have basically caused autoimmunity and that is now my problem.

All I know at this point is that my neuro symptoms are off the scale and getting worse. I feel like I'm being permanently given electric shocks and my nerves and brain have been destroyed.

I would think all these infections cause immune suppression...ie bart, babs, lyme...etc...etc.
If you haven't thoroughly treated the infections...how would it not be active infection?

Try a bart specific drug - like Rifampin or Rifabutin....for two weeks...and see what happens.

Is it possible that your nerve symptoms are from the DSF (and it's long half life)? When was your last dose?
Posted 11/21/2019 7:03 PM (GMT 0)
"One of them even suggested a recent infection."

what test showed it was recent? Are you talking about IgM antibodies? If so, that doesn't necessarily mean recent.

I had symptoms for about 15 months and tested positive with IgM antibodies.
Possibly had them brewing since childhood.
Posted 11/21/2019 7:59 PM (GMT 0)
Why cant you get in to see a GP? I dont understand, i thought NHS was supposed to be pretty solid and they wont allow you to see a GP?
Posted 11/21/2019 8:37 PM (GMT 0)

JovaLyme said...

Girlie said...
"One of them even suggested a recent infection."

what test showed it was recent? Are you talking about IgM antibodies? If so, that doesn't necessarily mean recent.

I had symptoms for about 15 months and tested positive with IgM antibodies.
Possibly had them brewing since childhood.

I'm baffled Girlie.

My original NHS test was negative, quite conclusively apparently.

The Armin test showed a weak positive and low CD57.

A second NHS test showed every single thing as negative apart from OspC Antigen as positive. The comments on this one said: "Isolated IgM OspC blot positive in the absence of detectable C6 antibody may be a non-specific result (due to cross reaction with for example EBV) but can be an indication of early infection."

The most recent NHS test came back completely negative.

I am completely bewildered. I feel like I'm dying half the time, dizzy, disorientated, have no energy, like I'm being electrocuted, pain everywhere, arthritis, exhausted, my eyesight is terrible etc etc. But all my results are totally inconclusive and I'm getting no treatment at all. I've been treating myself based on the Armin test and symptoms that suggest bartonella, but I now feel worse for doing it.

I have no idea what to do.

=================

In most diseases IgM means recent/acute infection but with lyme - IgM can be an older infection

Non lyme docs don’t know that tho

Hang in there - Jova -
Posted 11/22/2019 12:22 AM (GMT 0)
JovaLyme,
Sorry for what your dealing with, its a tough road to figuring out whats wrong and getting on the right path to getting better or getting some relief from the worst symptoms.

While I cant be sure what is exactly going on as I am not an medical expert, I would suggest considering detoxing alternating zeobind (or something similar), and activated charcoal for a week or so.
I would also suggest researching and possibly trying Jerrnigans annti tox II cns/pns tincture.

Could it be possible that after the 4 weeks of disulfiram, your body is just overloaded with die off(Toxins and ammonia build up in the brain) and needs a bit of help to get back to a more stable condition before treating again.

I have had that experience before and had to back off everything and just detox and get to a more stable place.

Take care and I wish you the best of healing.
Posted 11/22/2019 6:11 AM (GMT 0)
Dr. J is now using methylene blue from what I hear. A friend of mine just started taking it a week ago or so.
Posted 11/22/2019 6:35 AM (GMT 0)

Sheekster said...
Dr. J is now using methylene blue from what I hear. A friend of mine just started taking it a week ago or so.

Do you know if he’s incorporated the MB into his protocols?

Or is he just supporting your friend who wants to try it?

My last appt with him - I asked him about DSF and he said he has a few patients on it - but they’re doing it on their own - sounds like he’s not actually endorsing it - but still open to it.
I wonder if he writes a prescription for it.

I don’t have an appt until March - I may discuss it with him - unless - I am symptom free by then ...
Posted 11/22/2019 8:51 AM (GMT 0)
project - The symptoms u describe are classic peripheral neuropathy and not Bartonella.

U need to stop taking the Disulfiram if that is truly happening to u. Tell your doctor as well...although he won’t be able to help.

Definitely a big red flag. Time to reassess.
Posted 11/22/2019 2:46 PM (GMT 0)

Sheekster said...
Dr. J is now using methylene blue from what I hear. A friend of mine just started taking it a week ago or so.

//////////////////////////////////////////////////////////////////

That’s great news that Dr J is using Or allowing patients to take DSF and MB. His opinion along with Dr H means it must actually be working. I hope he actually includes it in his protocol cause that will be an even better sign.
Posted 11/23/2019 7:26 AM (GMT 0)

Girlie said...

Sheekster said...
Dr. J is now using methylene blue from what I hear. A friend of mine just started taking it a week ago or so.

Do you know if he’s incorporated the MB into his protocols?

Or is he just supporting your friend who wants to try it?

My last appt with him - I asked him about DSF and he said he has a few patients on it - but they’re doing it on their own - sounds like he’s not actually endorsing it - but still open to it.
I wonder if he writes a prescription for it.

I don’t have an appt until March - I may discuss it with him - unless - I am symptom free by then ...

Hi is incorporating it into his protocols. I am not sure what else is in the protocol, but its the typical babesia or bart stuff. Not sure where exactly my buddy is in the treatment cycle. He started probably 6 or 7 months ago or so.
Posted 11/23/2019 9:11 AM (GMT 0)
Sheekster - I think he should be finished the Babesia protocol and on the Bart/persisters now... unless he had to extend Babesia.

I’d love to talk to DrJ about trying the dsf but my next appt isn’t until March so it’s going to have to wait.

So just the MB - he’s not on the DSF too?

So are you going on it too - or do you think you don’t need anything else than the “usual” meds/protocols.
Posted 11/23/2019 11:22 PM (GMT 0)

Rikky1 said...

[quote]"Does anyone know if Dr. J in DC is testing out methylene blue in his patients?"

JovaLyme said...

[quote]"I tried methylene blue alongside disulfiram and it definitely worsened my neuro symptoms, but I've no idea which infection is causing them.

My symptoms are nearly all neurological now and without knowing which infection to target I feel a bit stumped at this point. I certainly don't feel any better at all after 4 weeks of disulfiram. If anything I feel a lot worse, so I would say it hasn't hit whatever infection is causing the neuro symptoms whatsoever."


I haven't heard anyone mention of the fact that methylene blue is considered to be an MAO-Inhibitor (and could cause neurological symptoms, as such). I only know this because I've researched MAO-Is, and am currently on one now (as an antidepressant)--it's called Nardil. They are potent antidepressants, but have to be used carefully. There are major dietary restrictions that have to be observed, or you can wind up in a "hypertensive crisis." Certain foods (i.e. any type of fermented or aged proteins, like aged cheese, smoked meats), certain dietary supplements, certain pharmaceuticals, and many mind-altering drugs have to be avoided. Many MAO-Is are of the kind that are called "irreversible"--the Monoamine Oxidase is bound permanently until the cells produce more of it. I don't know whether or not methylene blue fits into that category, but if so there could be a cumulative effect. The foods that are culprits (aged proteins) contain an amino acid called Tyramine, and must be avoided or minimized. Any SSRI antidepressants have to be avoided like the plague, as the combo will cause "serotonin syndrome"--a serious consequence with many neurological side-effects.

Post Edited (BlueRidgeDave) : 11/23/2019 4:34:14 PM (GMT-7)

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