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What do you take for Lyme&co induced MCAS?

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Posted 2/18/2020 2:07 PM (GMT -5)
Hi, bless you all,
Does anyone here suffer from MCAS as well as Lyme? What are you taking/doing for it?

I have been sensitive to a number of things and consuming anything at all has been a challenge. I always try to get in the best mood I can beforehand to help my system. Singing, dancing, visualization meditations and watching comedies. Because stress releases histamine. I have been able to take benadryl and I did a little test with zyrtec that went okay. I wonder if anyone takes both of these. I've heard you can do zyrtec in morning and benadryl at night. I like the calming effect that benadryl gives me. My anxiety has been high, so the sedation doesn't bother me.

I would like to control this so I can get back on some form of treatment for Lyme. I've paused herbs for a little while following an mcas flare.
Posted 2/18/2020 2:11 PM (GMT -5)
I do a low histamine diet and take (1) Zyrtec and (2) Zantac or Pepcid per day. I think it helps.

I have Lyme and quite sure I have MCAS as well. I believe it is infection related MCAS, as it improves when treated for infections.
Posted 2/18/2020 2:26 PM (GMT -5)
Welcome to the forum!

Many of us have MCAS. Feel free to use the search bar to look at past discussions, as there are many about this.

If you have not already done so, then check out the book Toxic by Neil Nathan. He talks about the relation of MCAS with Lyme and lays out a plan for treating it.

For MCAS, a low-histamine diet has been extremely helpful for me, especially cutting out vinegars, very ripe fruits, aged foods, and fermented foods. I also take quercetin before every meal, as well as curcumin. There are some OTC and prescription drugs that help people as well, like proton pump inhibitors, mast cell stabilizers (e.g. cromolyn sodium), and antihistamines. Supplements like bromelain, DAO, and freeze-dried nettles can be helpful as well.

It's a great idea to get MCAS under control so that you can tolerate other types of treatment. Wishing you luck!
Posted 2/18/2020 3:16 PM (GMT -5)
I was just writing the same advise as saraeli, supplements, quercetin with bromelain, curcumin, DAO enzyme.
Benadryl reduces amount of acetylocholin in brain, is linked to dementia, Zyrtec is better. Zyrtec and regular use of Benadryl give me anxiety.

Post Edited (Duza) : 2/18/2020 1:48:52 PM (GMT-7)

Posted 2/18/2020 5:09 PM (GMT -5)
Also, try Loratadine (brand name is Claritin but generic is cheaper and you can get a bunch of it, 365 tablets a year's worth, for like 12.99 on Amazon, I think it's the Goodsense brand that's what I use)...

And regarding those other antihistamines, there is another one that I use less often because of the acetylcholine/dementia risk, and that is not Benadryl but the very similar Hydroxyzine HCL, I take a half-pill (25mg/50mg) if I'm anxious or right before I sleep, since anesthesiologists use it in tandem with stronger general anesthesia sedative pre-operatively and it is generally safe, but cognitively it might make you feel more foggy/groggy.
Posted 2/18/2020 5:13 PM (GMT -5)
Knowing your triggers can help, too. It took me years to figure out that all the fermented foods I was eating to heal my gut and diversify my microbiome were the cause of all of my brain fog and cognitive symptoms! Foods are a huge one. In addition, some find they react strongly to heat, cold, showers, certain fabrics, fragrances, exercise, stress....

Have you looked into mold exposure, possibly from hidden mold in your environment? Mycotoxin illness can go along with Lyme, and it causes MCAS as well.
Posted 2/18/2020 5:18 PM (GMT -5)
Thanks for the welcome. And the ideas. I just got off the phone with my LLMD. I'll share what he said to try.

10 mg zyrtec in the morning
10 mg singulair around dinner
50 mg benadryl before bed

Take high dose B12 for a while, then add folate

If tolerated, add Cromolyn, doxepin and librax (I have old prescriptions for these, easily renewed) He said the Cromolyn could be used in place of quercetin if my body would rather tolerate that.
He wanted to make sure I was getting up and moving around, and I am.
It feels good to have a plan of action.

He said something about Pepcid, but it got lost in the conversation and he didn't include it when we did a rundown of the instructions. I've never tried singulair before. I read its good for respiratory issues.

Yes, mold was addressed a few years ago.

Post Edited (zz_woody) : 2/18/2020 3:26:53 PM (GMT-7)

Posted 2/18/2020 8:11 PM (GMT -5)
I take Xyzal at night, Neuroprotek and AllerDhq morning and night, and Vit C morning and night. I went through one bottle of Histamine Block (DAO supplement), but I don’t think it did much. I have chromolyn sodium but haven’t taken any.

My MCAS was triggered by mold. Rx antifungals helped and TUDCA has really helped.
Posted 2/19/2020 5:19 AM (GMT -5)
And yeah zz_woody, Singulair also known in generic form Montelukast Sodium may help. And evening time, dinner, bedtime is probably the right time to take it, as I think it causes drowsiness.

And the Doxepin, low dose (10mg or less) at night-time for sleep as an adjunct, also works.
Posted 2/19/2020 5:32 AM (GMT -5)
And zz_woody, I find my symptoms worsen when I eat too much (or any) of the wrong foods, sugary, pasta, macaroni, gluten, nightshades probably, cheese, dairy, meat likely also causing inflammation and MCAS effects like tachychardia, asthma. Well, anyway MSG and sugar I know for fact seem to cause a high heart rate with me. Everyone has different food sensitivities, often more so after tick-borne disease (see alpha gal for instance).
Posted 2/19/2020 9:18 AM (GMT -5)
I have tried most of the things I listed, and I should mention that the most effective thing by far was the low-histamine diet. You might find that MCAS is a non-issue for you if your overall histamine level is minimized by changing your diet.
Posted 2/21/2020 8:09 AM (GMT -5)
I also feel I have MCAD triggered by Lyme and mold toxins. Ketotifen has helped with insomnia, stopped the weight loss, and fatigue. Cannabutter (made from cannabis infused coconut oil) has given me my life back.

https://www.mastcelldisease.com/mast-cell-disease-medical-marijuana/

In his book, Never Bet Against Occam, Dr. Afrin discusses his experience with patients who use marijuana to help with their mast cell disease symptoms:

"The mast cell surface features (inhibitory) cannabinoid receptors, making me wonder whether at least some of the chronically ill patients out there who claim that the only thing that makes them feel better is marijuana might be unrecognized MCAS patients in whom THC’s binding with the cannabinoid receptors on their dysfunctional mast cells leads to a quieting of the activity of those cells and thus a lessening of symptoms."
Posted 2/21/2020 10:44 AM (GMT -5)
Be careful with anti histamines, try to take only as needed and not every day, they mess with your itching receptors (histamine) and if you take it too long you could have a rebound effect after withdrawing from them.
Posted 2/21/2020 12:47 PM (GMT -5)

saraeli said...
Knowing your triggers can help, too. It took me years to figure out that all the fermented foods I was eating to heal my gut and diversify my microbiome were the cause of all of my brain fog and cognitive symptoms! Foods are a huge one. In addition, some find they react strongly to heat, cold, showers, certain fabrics, fragrances, exercise, stress....

Have you looked into mold exposure, possibly from hidden mold in your environment? Mycotoxin illness can go along with Lyme, and it causes MCAS as well.

My God, I'm exactly the same Honestly, is there any way to cure this?
Posted 2/21/2020 12:51 PM (GMT -5)

dmw52 said...
I also feel I have MCAD triggered by Lyme and mold toxins. Ketotifen has helped with insomnia, stopped the weight loss, and fatigue. Cannabutter (made from cannabis infused coconut oil) has given me my life back.

https://www.mastcelldisease.com/mast-cell-disease-medical-marijuana/

In his book, Never Bet Against Occam, Dr. Afrin discusses his experience with patients who use marijuana to help with their mast cell disease symptoms:

"The mast cell surface features (inhibitory) cannabinoid receptors, making me wonder whether at least some of the chronically ill patients out there who claim that the only thing that makes them feel better is marijuana might be unrecognized MCAS patients in whom THC’s binding with the cannabinoid receptors on their dysfunctional mast cells leads to a quieting of the activity of those cells and thus a lessening of symptoms."

Dare I ask what Dr Afrin says about the outlook for this condition?
Posted 2/21/2020 1:21 PM (GMT -5)
I think his treatment would depend on test results. He is very expensive to see and have testing done. He uses imatinib with some patients.

Another thing that has helped people with MCAD is DRNS. The theory is that MCAD is a limbic system dysfunction.
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