MCAS Diagnosis

[[mi...]]

So I went to an immunologist today. She is testing me for MCAS based on my current symptoms but also the last 20 years of my life with strange reactions to everything before benzos were even in the picture. Benzos actually stabilized those symptoms for the first time in years and benzos are a known mast cell stabilizer, so the picture fits. She said even if the test shows up negative she will still treat me. She's starting me on Allegra and cromolyn. Anyone tried these treatments or gone down this path? Obviously I expect reactions to this because everything I take backfires, but here's to trying something new.

[[he...]]

Hey there how’s it going? I’m positive I have MCAS and had it before WD. I’m pretty sure my brother has it too and he’s never been on a benzo. I saw an allergist who did one test tryptase I think and said “I’m stumped don’t know what to do you you come back as needed”. 

[[mi...]]

Hey, I haven't started treatment yet with Cromolyn or Antihistamines. I've chickened out. But I have it and plan to at some point.

[[he...]]

@[mi...] hey there, did you get a diagnosis and scripts? 

[[Ta...]]

I personally think that we all probably have MCAS. The benzos magically evened things out for us,  now, it's just about impossible to live without them. This mast cell issue is to me the most important key in this whole Benzo drama. I read that benzos work on H1 and H3 receptors. Finding a way to calm those down makes withdrawal bearable. I used diamine oxidase (DAO) supplements for MCAS - but they cooked my kidneys - maybe I took too much? We all seem to go overboard when we find something that helps...if one works, maybe 50 will heal me! But that NEVER seems to work out! This is a treacherous and slippery slope that we are all on. Just keep trying different things. It's like learning to walk, we just need to put one foot in front of the other and keep going! Have you read anything about GLUTAMATE?

 

[[or...]]

3 minutes ago, [[T...] said:

I personally think that we all probably have MCAS. The benzos magically evened things out for us,  now, it's just about impossible to live without them. This mast cell issue is to me the most important key in this whole Benzo drama. I read that benzos work on H1 and H3 receptors. Finding a way to calm those down makes withdrawal bearable. I used diamine oxidase (DAO) supplements for MCAS - but they cooked my kidneys - maybe I took too much? We all seem to go overboard when we find something that helps...if one works, maybe 50 will heal me! But that NEVER seems to work out! This is a treacherous and slippery slope that we are all on. Just keep trying different things. It's like learning to walk, we just need to put one foot in front of the other and keep going! Have you read anything about GLUTAMATE?

Hello @[Ta...] & thank you @[mi...] for your post, I had to look up MCAS and see as it's an allergic reaction, or I guess, your body can either fight that off, or not.  I am dealing with a lot of allergy, and possibly Histamine intolerance, not sure if they are the same.  They seem to be making up new names for very old issues with our health, but just sometimes

My issues are mainly over-production of mucus which is in almost every part of our body, and digestive enzymes.  I'm trying the DAO as soon as it arrives, although my condition has not gotten worse during wd, but it can still go over the top, and I have narrowed it down to histamine-containing foods.  I think my body isn't handling it all.

I also am pretty certain the benzo increased my "deficiency" so seems pretty normal for me, a person who had allergies all her life.  I'm glad @[Ta...]mentions her kidney issue as I sure don't want that to happen so wanted to ask her how many and how often she used the DAO?

If I can get some relief within the 30 day supply, which is much shorter than 30 days since you have to take one before meals every day.  If it gives me some relief, I plan to remove any histamine-containing foods, if that's even possible.  Just one more thing I have to give up since I'm already on Keto, which has changed my life for the better, and I'm sure has to do with my lack of wd sxs I've had so far.

Keep us updated @[mi...] on how things go.  Some of my allergy issues may have also been helped by the clonazepam I took as well.

 

[[or...]]

On 03/12/2023 at 19:30, [[m...] said:

Hey, I haven't started treatment yet with Cromolyn or Antihistamines. I've chickened out. But I have it and plan to at some point.

Do you relate your allergies more to environment or foods Mikey?  I've struggled figuring that one out for sure.  I decided to buy a good Air-Purifier and I do think it helps and it pretty much covers my whole 1 bedroom apartment.  I won't take an antihistamine because for me, I pretty much became addicted, and never got to the root cause of my allergies.

I understand we can't all get away from the "cause" of our allergies, but if there's an alternative to a drug, I'll take that route after this whole experience with a benzo. 

[[Ma...]]

On 13/11/2023 at 17:15, [[m...] said:

So I went to an immunologist today. She is testing me for MCAS based on my current symptoms but also the last 20 years of my life with strange reactions to everything before benzos were even in the picture. Benzos actually stabilized those symptoms for the first time in years and benzos are a known mast cell stabilizer, so the picture fits. She said even if the test shows up negative she will still treat me. She's starting me on Allegra and cromolyn. Anyone tried these treatments or gone down this path? Obviously I expect reactions to this because everything I take backfires, but here's to trying something new.

Did u try it 

[[Pe...]]

@[Ta...] Wait WHAT??? DAO cooked your kidneys??? Please explain how you know this, did your doctor figure this out or did you? Where did you find info on this… I’ve been taking extremely large doses of NaturDAO the high dose 3,000,000hdu type (and I take 3 or 4 before each meal). I have MCAS but don’t tolerate the meds for it well at all, and am far, far sick to travel out of state to a specialist. 

How much DAO were you taking and for how long? And what exactly happened to your kidneys?? Have they recovered at all?