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Bartonella - MCAS connection?

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Posted 3/10/2020 2:29 AM (GMT 0)
Is there a connection specifically between these two? Bart is my biggest problem I believe and my MCAS has been around since before I started abx therapy so it's not due to that (though it'd be convenient if that were the answer as I could just stop them). I just started Rifampin at the lowest dose 3x/week so hopefully I'm finally hitting bart where it hurts but has anyone seen their MCAS improve with treatment of bart?

Post Edited (jb1994) : 3/12/2020 1:39:48 PM (GMT-6)

Posted 3/10/2020 2:36 AM (GMT 0)
Yes. Dr M the bart guru specializes in this. Aerose91 can tell you more.
Posted 3/10/2020 5:03 AM (GMT 0)
Oh interesting, I await her reply.
Posted 3/10/2020 3:48 PM (GMT 0)
Yes. MCAS and Bart can be connected. In some cases, bartonella can cause MCAS, in other cases it's completely separate from the bartonella infection. In my case, my MCAS symptoms came after the onset of my bart symptoms and everything just happened acutely so that's how my LLMD and I came to that conclusion. I believe Dr. M has done studies on how MCAS is intricately connected to bart. Anywho, all I know is I was on Dr. M's protocol and treated with his typical abx combo along with mast cell stabilizers (quercetin, ketotifen, cromolyn, singulair, h1/h2 blockers, etc.). In fact, the majority of my medication regimen consisted of mast cell stabilizers and the remainder were the abx, supplements, detox.

MCAS markers that were tracked for me include PGD2 levels and tryptase along with sjogren's markers (correlation with mcas/bart symptoms). All of those markers for me was very elevated at the beginning of treatment. After I finished treatment, all of them returned to normal levels.

This is different for each person...for some people it may take longer after treatment for mast cells to calm down.

Hope this helps.
Posted 3/10/2020 5:43 PM (GMT 0)
Cignet- ah that makes sense if others are complaining about it. What a nightmare. Do you mean to say Rifampin should be taken indefinitely? My doc said to space it out during the week. I'm taking it M/W/F and only took 125 (or 150? the starting dose) and it hit me kinda hard even at that dose. I'm also on Bactrim and Biaxin but we might get rid of one of those.

peetza- yeah those are all the typical mast cell stabilizers, problem is I have tried all of them! Either they don't work or they make me worse. Every one you named. So I'm just on quercetin and am starting skullcap which is supposed to help.
Posted 3/10/2020 6:03 PM (GMT 0)
Yeah I don't want that to happen but I've read Girlie's Dr. J pulses it, even taking it three days a week and then stopping a couple weeks, so I don't know. It must work for him because he's a pretty successful doctor. She said she improved.
Posted 3/10/2020 10:38 PM (GMT 0)
It's possible it happen to me with Lyme I beleived to have Bart and babesia as well and rickettsia I was diagnosed with. Funny thing is I started taking oregano oil capsules past 2 days and omg had a flare up of arthritis shooting pains in my legs u guys ever hear of oregano oil killing off Lyme and all. And I have mcas I came to that conclusion myself alone with developed orthostatic hypotension smfh I'm now in school actually for herbs acupuncture accupressure and traditional Chinese medicine if any questions feel free to ask me everyone even tho I'm still learning and practicing. I always say nobody can answer your question better than yourself since you know how it feels whatever your experiencing u know!
After getting Lyme disease my mcas started never ending allergy list of foods and pretty random things even sun exposure random hives as well


jb1994 said...
Is there a connection specifically between these two? Bart is my biggest problem I believe and my MCAS has been around since before I started abx therapy so it's not due to that (though it'd be convenient if that were the answer as I could just stop them). I just started Rifampin at the lowest dose 3x/week so hopefully I'm finally hitting bart where it hurts but has anyone seen their MCAS improve with treatment of bart?

Posted 3/11/2020 1:18 AM (GMT 0)
Yeah Nerd my allergy list is ever growing as well and I am triggered about once a week because I go out to eat 2-3x/week so I feel like I'm always walking on eggshells. It's a horrible anxiety-driven life I lead thanks to this MCAS bull. If not for MCAS I'd consider myself pretty much recovered.
Posted 3/12/2020 2:51 AM (GMT 0)
Yup I did the LDN for a while and didn't notice much improvement, I think I've tried two rounds of it most recently about a year ago. Doesn't hurt but doesn't help. There must be a bart MCAS connection then if everyone's mentioning it.
Posted 3/12/2020 4:00 AM (GMT 0)
Sure does. Of course other things can too like lyme or toxins. Dr M has a lot of MCAS patients and uses quercetin, H1 & H2 blockers and methylation. What's interesting to me is that Buhner also writes about the use of antioxidants in his bartonella book and turns out antioxidants and polyphenols are mast fell stabalizers. In fact they work better for me than any drug. High dose camu camu powder (vit c), quercetin, rutin, resveratrol. All effective so I do have to wonder if there is an overlap between oxidative stress and MCAS
Posted 3/12/2020 4:15 AM (GMT 0)
I tried ldn before I was diagnosed with lyme - it didn’t work for me.. in fact I felt worse at night when taking it.

I had stumbled on the website one day.
Posted 3/12/2020 5:03 PM (GMT 0)
Can I ask a silly question? What is MCAS?
I started Rifampin 2x/day, 150mg a week ago along with the Azithromyacin (300mg a.m. only, 1 week on 1 week off) which i started in December. Fighting polymyalgia rheumatica pain which totally goes away when I take Prednisone but only did for 2 weeks so i could start Rifampin. Fighting off and on stomach pain but nothing compared to the PMR!
Posted 3/12/2020 7:39 PM (GMT 0)
KRae- it is mast cell activation syndrome, basically your body overproduces histamines which gives you extreme inflammation, causes of the overproduction include foods and supplements your body doesn't like, extreme temperatures, stress, heavy metals, any number of things. Mast cells degranulate and explode in your body releasing histamine everywhere that the body cannot break down well due to insufficient DAO enzymes, for a more scientific explanation.
Posted 3/13/2020 12:45 PM (GMT 0)
Everyone should use NAC b4 anything it's a biofilm buster and it really works for me. I have Lyme Bart babesia I beleive h. Pylori and sibo so any type of antibiotics are out of the questions for me . I have mcas lifetime of benedryl and epipens so natural herbs and oils seemed to cure my allergies wierd enough . Remember antibiotics will deplete all other good bacteria which we don't want . I hvnt herx as bad as most ppl as I've taken NAC and activated charcol lemon water and lots of ginger really helps a lot. Was wondering if anyone has wierd allergies like me 1st time I was bitten by a tick was 3 yrs old right after that develops anyphilaxis to fruits veggies all nuts seafoods mold latex soy wheat cats dogs birds all types of crazy crap uneven get random hives and shortness of breath frm shower water sometime like wth is that now?!
Posted 3/13/2020 12:49 PM (GMT 0)
I just started astragalus capsules powder 3 days ago. Has anyone else tried it as I started to feel sick like someone punhced me in the gut??? Also felt a surge of anxiety at first like an intense fear heart rate went up a little and I was really sweating out felt really sweaty like a fever bt not a fever just sweaty and hot for a little?? Docs thought I had lupus bt my flushed red face and such aka lupus rash subsided with the astragulus face is actually glowing. Who knows wth we have in our bodies for sure all I know is astragulus works for just about anything. It also made my neck cracking and still neck subside thank god thought it was gonna break one of these days smh
Posted 3/13/2020 2:06 PM (GMT 0)
MedicalNerd, I have seen people with the number of reactions you have (including to water) when they have uncontrolled MCAS. Is that something you have treated? Leaky gut also contributes to people's reactions, and it sounds like your poor gut is struggling. Can I ask what you are doing for treatment in general right now? Sadly I don't know what's up with the astragalus situation, aside from that Buhner does not recommend it for most people with Lyme, and that it sounds like you are having a bad reaction to it.
Posted 11/9/2021 12:13 PM (GMT 0)
Good morning,

I know this is an old thread. I have bartonella and have been treating for 2 months with antibiotics. During this treatment time, I have gotten odd small round rashes when herxing. I attributed them to die-off but my dr. suggested it may be MCAS, but without recommending anything to do if it were.....

about a week and a half ago, while flaring from my period, and also herxing from increasing rifampin, I started having insomnia and nausea. While I'd previously had nausea with bartonella, this was more intractable. And I've never had insomnia with it before. So this seemed odd. I'm also breaking out in more rashes now all over my body where the skin is really red and burny.

I'm really concerned now that I do have MCAS and it's gone from a slight case to much worse. Will I even be able to treat bartonella if I have MCAS? I know it's from bartonella because I got the tick bite 3 months ago and have never had anything like this before.

I started the low histamine diet just 2 days ago, and am taking D-Hist by Ortho Molecular Products. This morning my whole body felt rashy so I did take a claritin.

I guess I'm just scared. Now I have what seems like another huge problem to figure out...will I be able to recover from bartonella if I Have MCAS??
Thank you
Katie
Posted 11/10/2021 2:34 PM (GMT 0)
I know neil Nathan says in his book that one of the ways he treats mcas is by treating bartonella. I think he said it’s the second biggest cause for mcas, the first being mold issues.
Posted 11/10/2021 3:03 PM (GMT 0)
KatieWood, I definitely recommend that you pick up Neil Nathan's book Toxic if you have not already. He talks extensively about Bartonella and MCAS, since they often go together. I know it's upsetting to realize or develop yet another thing to treat, but treating MCAS might really improve your quality of life and ability to handle treatment. It's actually really good to realize you have it, so it can be dealt with.
Posted 11/10/2021 6:02 PM (GMT 0)
What worries me about MCAS is that it could potentially become a catch-all term.

What I mean is this: if you told your doctor you have rashes during herxing, and he says it might be MCAS, I think he or she might be jumping the gun.
Of course, if he is taking an entire picture into account it might be different, but that's not what I'm getting from what you wrote.

In regards to the book that Bailey and saraeli are recommending, I think that's great.
Here's what the book says about skin symptoms in MCAS:

■ Skin: Rashes of every description, especially itchy ones (pruritus), often
triggered by taking a hot shower and often associated with flushing and
hives

Keep in mind, there is an entire list of symptoms in his book, this is just the skin part. Also, he lists many tests that can be done to help diagnose it.
Posted 11/12/2021 9:52 PM (GMT 0)
Thank you all for the responses, just seeing them today. It didn't alert me that there were responses!

Saraeli -- I see that you have MCAS as well - what did/do you use to keep it under control?

I'm using D-Hist right now, and 1 claritin a day until I see my new lyme dr Monday and hope she can give me direction.

I took myself off the antibiotics this Monday (5 days ago) because the rash and burning were quite bad. I already have some symptoms coming back from being off them so I desperately want to continue treatment. But my body was in like a crisis it seemed from the MCAS....
Posted 11/12/2021 11:48 PM (GMT 0)
KatieWood, any chance you developed a medication allergy to the antibiotics? Rashes and hives can be early symptoms of medication allergies. Allergies to antibiotics are not uncommon and can escalate, so taking a break from the antibiotics is a good idea. There are multiple antibiotics, herbs, and other treatment options for Bartonella, so don't be too concerned if the meds your doctor usually treats with first are not a good fit for you.

My MCAS is manageable with a low-histamine diet, quercetin, and curcumin. If I am under a lot of stress or have unavoidable triggers (like leaf molds this time of year) then I still get occasional mild symptoms. DNRS limbic system retraining also helped to regulate my body's reactivity.
Posted 11/13/2021 12:48 AM (GMT 0)
I do think purple makes a good point. Normally I would just think of it as a dermal herx. But then again perhaps that attitude led me to ignore mcas warning signs till I ended up in my cataclysmic state.
Posted 11/13/2021 11:26 AM (GMT 0)
Thank you for the responses. I believe I did what you did Bailey and ignored warning signs. I am definitely in a cataclysmic state. It was really just lots of rashes that I believed were die-off rashes. Then I started having new symptoms out of the blue on top of my normal symptoms - intractable nausea and insomnia. Then I broke out in a full rash, and had that burning feeling inside my skin for days. So, I think I underestimated what MCAS was/is and wish my LLMD had been more proactive to explain the consequences of not taking it seriously. I assume my histamine bucket just overflowed?
Posted 12/3/2021 9:24 AM (GMT 0)

WalkingbyFaith said...
Yes. Dr M the bart guru specializes in this. Aerose91 can tell you more.

Would anyone be able to send me info about "Dr. M"? I have a positive test for Bartonella, plus very positive WBs and I-Genex for Borrelia/Lyme. But I'm seeing someone who is treating me for Borrelia/Babesia. For a long time, I have felt my main issue could be Bartonella. Would really like to see someone who knows about it. I can send contact info, if that would be possible. Thanks!
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