HealingWell
Search Close Search
☰

Podcast on bartonella & MCAS

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/16/2019 1:34 PM (GMT 0)
For those interested in bartonella & MCAS. Interview with Dr. Tania Dempsey.

https://www.betterhealthguy.com/episode106?fbclid=iwar2whutgcih4wjsihbzmypel6hcfewk-46ajyq5b4eurlswdfld5sxsgit0
Posted 10/16/2019 2:01 PM (GMT 0)
She is seeing evidence of disulfiram helping bart. Starting to pair methylene blue with disulfiram.

Also states probably never eradicate bart, just lowering load for immune system to handle.

Post Edited (k07) : 10/16/2019 11:07:17 AM (GMT-6)

Posted 10/16/2019 2:23 PM (GMT 0)
Also, she states a paper is coming out in next couple months that indicates multiple chemical sensitivity (mcs) is mast cell activation disorder (mcas).

I have mcs so i guess time to just call it mcas. She also states, you can have mcas but not necessarily triggered by chemicals.

I was supposed to be evaluated for mcas this week, had to cancel, so now not until Feb. I think it was always underlying for me.
Posted 10/16/2019 2:39 PM (GMT 0)

k07 said...
Also, she states a paper is coming out in next couple months that indicates multiple chemical sensitivity (mcs) is mast cell activation disorder (mcas).

I have mcs so i guess time to just call it mcas. She also states, you can have mcas but not necessarily triggered by chemicals.

I was supposed to be evaluated for mcas this week, had to cancel, so now not until Feb. I think it was always underlying for me.

How do you get evaluated for MCAS? MCS is by far my worst symptom along with mold, which I think is pretty much a conconction of chemicals from mold and water damaged buildings.

My gut is a big player in this, too. When I get symptom relief after expelling stuff from my gut, I feel some improvement in the chemical sensitivities, but not as much as I used to. Whatever is in my gut is apparently a toxic chemical production plant.
Posted 10/16/2019 5:25 PM (GMT 0)
Hey guys what is methylene blue?
Posted 10/16/2019 6:16 PM (GMT 0)

HeartsinPain said...
Hey guys what is methylene blue?

I know it’s a treatment for
Methemoglobinemia - because when I was on dapsone I read about it (dapsone can - rarely cause Methemoglobinemia)
Posted 10/16/2019 6:52 PM (GMT 0)
Jova - did you read through this thread on MMS?

https://www.healingwell.com/community/default.aspx?f=30&m=3642425
Posted 10/16/2019 8:13 PM (GMT 0)
My doctor suggested methylene blue as an add-on to my disulfiram protocol. Right now disulfiram is giving me more than I can handle, so I haven't added it in. Plus my bartonella issues are largely resolved far as I can tell, at this point it is largely borrelia/babesia for me.

That said I think methylene blue is an incredibly promising agent. For some patients bart is the beast, and if we have more tools in the box to tame it the better. Gallium nitrate is another very intriguing treatment for bartonella, that one is very early stages I haven't seen many people using it yet. I'd rather try methylene blue than gallium nitrate just because there are more patients who've used the former, so a bit more of a track record.
Posted 10/17/2019 1:48 AM (GMT 0)
What exactly is it and where do you get it?
Posted 10/17/2019 2:03 AM (GMT 0)
https://www.everydayhealth.com/drugs/methylene-blue


Before trying it - read up on it - it does have interactions with some other meds plus there are some risks of side effects
Posted 10/17/2019 2:17 AM (GMT 0)

JovaLyme said...
@Girlie,

Is it only taken through IV like the article says?

I don't really get how this would kill pathogens to be honest. Anyone here used it?

I’m not sure - I’ve only looked into it briefly - when I was taking dapsone and daraprim - because I was freaking out that I may get the methoglobinemia (sp?) and wanted to know how it was treated.

I have silently freaked out a few times during the past few years with these infections and treatment or lack of treatment....
Posted 10/17/2019 3:33 AM (GMT 0)

JovaLyme said...
@Girlie,

Is it only taken through IV like the article says?

I don't really get how this would kill pathogens to be honest. Anyone here used it?

Jova, you can take it orally and Dr H is using a compounding pharmacy in Florida I believe. He combines it with other anti Bart treatments Like rifampin/rifabutin/Pyrazinamide/bactrim/Minocycline and seems to be getting promising results but it’s to soon to tell like DSF.
Posted 10/17/2019 2:52 PM (GMT 0)
Hey JovaLyme, I've basically been on all the frontline bartonella drugs, including pyrazinamide. Also pretty much every herbal bartonella antimicrobial. I never got much flare or improvement with bartonella treatments. It's really only in treating babesia and borrelia that I've seen most of all my improvements. I think bartonella is in the system (I almost wonder who doesn't?!), but I don't think it is driving symptoms and is largely corralled. Of course I might be wrong, which is why it would be interesting to try methylene blue and gauge my response. But it has cross-activity and can hit babesia as well (maybe other things too for all we know)...

There are certain combos one can do for bartonella, and then when you plateau and or don't respond anymore, you can rotate to the next line therapeutics. For instance, rotating rifampin to rifabutin... If you are curious about the combos I would def recommend Dr Horowitz's book, he lays out his treatment strategies and combos vis a vis the different infections.

If bartonella is a major issue for you, it def makes sense to meet it head on. For some of us babesia is a biggie, others it is bart. Sometimes when you cut one down, the other one jumps up and makes itself more present. It's an interesting dynamic, the bart-babs dynamic.

Many patients who are trying DSF but have heavy bart involvement are layering in some bartonella therapeutics along with that agent. Personally, given how potent DSF can be, I think starting with that agent alone and very carefully is the way to go. So long as response is controlled, can always then add in the bart agent(s).
Posted 10/17/2019 7:08 PM (GMT 0)
Jova - you could wait until you’ve done a few months of the disulfiram - see how you feel

You don’t want to overload your system.

Remember - your infection load is very high - as you’ve not really treated - except for a few months of doxy, right?

You can go for bart after you’ve done the Disulfuram

Sebreg had been treating extensively prior to going on the disulfiram and it hit him hard.
Posted 10/17/2019 8:59 PM (GMT 0)
Jova, people are combining dsf with any of the before mentioned Bartonella drugs. Just go easy like girlie and Sebreg said. Gauge your response to treatment first. Also most of the prominent llmd’s start with Babesia/Bartonella treatment first and then focus on the Lyme so that it’s easier to eradicate. Just a thought.
Posted 10/17/2019 9:17 PM (GMT 0)
My LLMD does Babesia - then bart/Persisters - those two treatments tske care of lyme.
✚ New Topic ✚ Reply