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Posted 12/4/2024 10:39 PM (GMT -5)
https://www.youtube.com/watch?v=Q4dXUiRZTNw

I was listening to this podcast earlier, and theres a very interesting part where Dave Asprey brings up a way to resolve MCAS.

The idea is that you take a histamine blocking drug/mast cell stabilizing drug like Ketotifen which blocks H1 receptors. This still leaves your H2 receptors open. So you also take a drug like famotidine (pepto bismol) which blocks H2 receptors. Mast cells repopulate about every 6 months. When they repopulate into an environment where they are effectively not being triggered, they start to behave normally again and you are able to discontinue treatment. In the case of famotidine you do need to take a supplement to promote normal stomach acidity during this time.

Any thoughts on this? I haven't seen much discussion before of how to overcome MCAS so I'm always open to new ideas.
Posted 12/5/2024 4:41 AM (GMT -5)
Basically, yes... but it's complicated.

The allergy symptoms and MCAS were my very first symptoms of Lyme disease. At the time, I didn't connect it to the tick bite. I never got a rash where the tick bit me, but over the next few years I started getting allergic to everything. Pollen that had never bothered me before was giving me fits.

When I started taking antibiotics this largely went away. The antibiotics that I took initially weren't enough to eliminate the borrelia infection, but it put the bacteria into a dormant state where my immune system didn't react to it so much, and the allergies started to go away. Of course, it came back when I later stopped the antibiotics.

So theoretically this can work, but I don't think just blocking H1 and H2 would be enough. I found that B-cell activation and antibodies are part of it too. It's not just the mast cells, but also antibodies against the wrong things that results in the mast cell activation. Activation of B-cells requires a signal, generally from helper T cells, indicating an active infection, so you would have to block this, and not just histamines.
Posted 12/8/2024 9:49 PM (GMT -5)

Quin said...
Basically, yes... but it's complicated.

The allergy symptoms and MCAS were my very first symptoms of Lyme disease. At the time, I didn't connect it to the tick bite. I never got a rash where the tick bit me, but over the next few years I started getting allergic to everything. Pollen that had never bothered me before was giving me fits.

When I started taking antibiotics this largely went away. The antibiotics that I took initially weren't enough to eliminate the borrelia infection, but it put the bacteria into a dormant state where my immune system didn't react to it so much, and the allergies started to go away. Of course, it came back when I later stopped the antibiotics.

So theoretically this can work, but I don't think just blocking H1 and H2 would be enough. I found that B-cell activation and antibodies are part of it too. It's not just the mast cells, but also antibodies against the wrong things that results in the mast cell activation. Activation of B-cells requires a signal, generally from helper T cells, indicating an active infection, so you would have to block this, and not just histamines.

ok, that make sense. So if i'm understanding correctly, the best way to solve my tickborne related MCAS would be to outright solve the tickborne diseases, in my case lyme/bart/rickettsia.
Posted 12/10/2024 8:26 AM (GMT -5)
My son's Lyme symptoms are in remission after about 3 1/2 years of herbal treatment, but he still has MCAS. For MCAS he takes Ketotifen twice daily. Other interventions that help him with his MCAS are:

allergy desensitization treatments (LDA)

air purifier in bedroom running all night

low FODMap, low-moderate dietary amine, and gluten free diet

Some herbs helped to some extent with MCAS but were less powerful than Ketotifen. The strongest of these herbs was Baicalin (Chinese skullcap). He couldn't tolerate quercetin or Neuroprotek. Had he tolerated them, they may have been more powerful than Baicalin. I'm not sure.

The Ketotifen helps with a cognitive and speech symptom that has fluctuated for years. There are days, and even times of the day, when he doesn't say long sentences very much but just uses single words or short phrases. For some reason Ketotifen helped this problem as soon as I added a morning dose, six months after his evening dose. This tells me it helps cognitively. Possibly it helps with a leaky blood brain barrier. I'm not sure. But I do see it helping. I've wondered for years what would help this particular symptom that has fluctuated for so long and seemed to respond to things like CBD oil but only briefly (and maybe coincidentally).
Posted 12/16/2024 10:14 PM (GMT -5)

MichiganLymie said...
My son's Lyme symptoms are in remission after about 3 1/2 years of herbal treatment, but he still has MCAS. For MCAS he takes Ketotifen twice daily. Other interventions that help him with his MCAS are:

allergy desensitization treatments (LDA)

air purifier in bedroom running all night

low FODMap, low-moderate dietary amine, and gluten free diet

Some herbs helped to some extent with MCAS but were less powerful than Ketotifen. The strongest of these herbs was Baicalin (Chinese skullcap). He couldn't tolerate quercetin or Neuroprotek. Had he tolerated them, they may have been more powerful than Baicalin. I'm not sure.

The Ketotifen helps with a cognitive and speech symptom that has fluctuated for years. There are days, and even times of the day, when he doesn't say long sentences very much but just uses single words or short phrases. For some reason Ketotifen helped this problem as soon as I added a morning dose, six months after his evening dose. This tells me it helps cognitively. Possibly it helps with a leaky blood brain barrier. I'm not sure. But I do see it helping. I've wondered for years what would help this particular symptom that has fluctuated for so long and seemed to respond to things like CBD oil but only briefly (and maybe coincidentally).

I take ketotifen and have noticed this in myself. From my experience I was so irritable i didn't want to say more than a few words, or even have the energy to a lot of times. This was frustrating for people around me and that only frustrated me more because I could not convey what I was going through. I take 1 evening dose. This medicine has been one of, if not the most helpful of the meds I take.
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