Which allergy meds are suggested for Mast Cell control in Lyme or Covid?

Tiger Lily 813

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Hi all,
I've been having a flare of symptoms that keep leading me to look into mast cell treatments, honestly not sure if caused by lyme/bartonella or covid, but I am not able to see a mast cell specialist at this time. I wanted to know if anyone has anecdotal info or experience with common otc allergy meds used for this purpose. Also not sure if there are certain genetic features that determine which is appropriate.
Much appreciated :)
 

MCASMike

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What are the symptoms? I think the key with MCAS is that there are a bunch of symptoms that don't seem to be related but are all consistent with MCAS, which is what led me to begin treatment for it. I followed the protocol mentioned by people like Afrin, including 10 mg loratidine in the morning and another 10 at night, 600 mg aspirin taken in small amounts throughout the day, 2000 iu vitamin D3 throughout the day, and Luteolin, the largest amount taken in the middle of the day but also drinking Mexican oregano/celery seed tea throughout the day. You can also take something like famotidine if you have GI issues, especially acid reflux, but in my case I had low stomach acid so I don't take it (and I don't have major GI symptoms now anyway). You should see symptom relief within a few days, or else I'd guess it's something else. Also, I use Zaditor eye drops for eye issues, which don't seem to be helped by the other things I mentioned.
 

bensmith

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@MCASMike my mcas isnt that bad, i dont really botice any symptoms besides stuffy nose and sore jaw. But it did kick off my cci i think. After covid.

You think its worth trying the protocol? Ive been hesistant because anti histamine drugs have not treated me kindly in the past.

Is that a long term protocol, tolerance with claritin? Thought id ask since you have mcas in your name ; )
 

Sushi

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I wanted to know if anyone has anecdotal info or experience with common otc allergy meds used for this purpose.
As far as over-the-counter, Dr. Nancy Klimas is recommending either Benadryl or Zyrtec to prevent any potential mast cell activation after a COVID vaccination. Don't know if that information helps!
 

Tiger Lily 813

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What are the symptoms? I think the key with MCAS is that there are a bunch of symptoms that don't seem to be related but are all consistent with MCAS, which is what led me to begin treatment for it.

@MCASMike I have so many systemic symptoms and also allergy type symptoms, mostly skin, gi and asthma. I have a background in lyme and bartonella, which could be what I’m dealing with now. I was doing great for about 6 years, but this latest setback has me catching up on current research. I’m reading that antihistamines are helpful for many with lyme or in that realm but wasn’t sure which.

Thanks so much for letting me know how Afrin’s protocol went for you :)
 

MCASMike

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bensmith, I'm a cautious person, diagnosis-wise, but I've had a bunch of symptoms (some for decades) that the various specialists I've consulted have been puzzled by. Two have said they simply don't see this in people my age unless there's something serious underlying it (osteoporosis in my mid 30s, and the postural orthostatic and breathlessness upon exertion issues). When I saw the list of typical MCAS symptoms, I realized this was likely my problem, read about the basic protocol, and since I had those things available to me, started it (just over 3 months ago). The "head fog" and sensitivity to temperature fluctuations went away quickly. The sensitivity to sound took a week or two. Then I started tea rich in Luteolin (Mexican oregano and celery seed), and saw other symptoms diminish or vanish after a while. However, if I stress my body beyond the usual, even eating too much in a meal, one or more recur. The good news is that the symptoms tend to go away quickly once I get back to the usual things I do each day.

As to your question, what I think I would do is try to find antihistamines that work for you and take a baby aspirin with each meal (or perhaps two, you just have to "experiment" and see what works for you). You can also try different diets to see if that helps, such as going gluten-free, but I found that over-eating was the major issue (along with citrus foods and citric acid). I thought I had CCI several years ago, and in fact wore a cervical collar for a while, which seemed to help, but the terrible headaches I would get once in a while I haven't experienced since going on my MCAS protocol. I would strongly suggest trying Luteolin or the Mexican oregano and celery seed tea idea, just be careful to buy supplements from a reputable company (there's a Ukranian one that seems like a total scam, for example). Give it several days and see what happens, but you have to keep your lifestyle consistent or else you won't know if it's working or not. I hope it works out for you!
 

max_yazhbin

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Hi all,
I've been having a flare of symptoms that keep leading me to look into mast cell treatments, honestly not sure if caused by lyme/bartonella or covid, but I am not able to see a mast cell specialist at this time. I wanted to know if anyone has anecdotal info or experience with common otc allergy meds used for this purpose. Also not sure if there are certain genetic features that determine which is appropriate.
Much appreciated :)
I dont know about MCAS but do know about lyme and covid:
https://forums.phoenixrising.me/threads/my-experience-with-lyme-disease.83923/
https://forums.phoenixrising.me/thr...send-it-for-free-to-covid-long-haulers.83924/