Normal Tryptase - Can It Still Be Mcad?

[POTSMama]

Julie,

I am concerned about the very high dose of Atarax I am on too, and will talk to the local allergist I'm seeing on Jan 5 again about whether it's time to try something else. He mentioned Doxepin as an alternative, but to be honest I am always terrified to try new drugs as I'm so sensitive to medications (recall I twice had a pretty severe reaction to Singulair so couldn't take that). Yes, I am on 8 Ataraz a day, plus sometimes a couple benadryl if I have a food reaction in my throat and dropping or fluctuating blood pressure and flushing, plus the Zantac, plus Klonopin/clonazepam only if needed for volatile cardiac symptoms. I asked about Gastrocom and instead they told me to get Nasalcrom but just spray it in the back of the throat 3-4 times a day before eating (as opposed to using it nasally), as apparently it's the same cromolyn drug - - but I wonder if Gastrocom would be better/stronger, and I'll ask. I have felt better on the Nasalcrom as far as less frequent throat reactions, but still reactive, still on a very limited diet, and worried because I have to go back to work at the office next week (albeit only 2 days a week for the first 2 weeks, so I can ease in). Right now my kids are on school break which is helpful as I am getting more sleep, and that seems to make a big difference.

I am thinking that I will try to find the "next best" doc at the hospital where Dr. Weber is, with the understanding that when Weber gets back on May 1, I will switch to him (and I will try to get him to work with Dr. Castells or Akin by consultation). I would just go to Boston to see the specialists straight away, but our insurance won't cover out of state because we're on an HMO not a PPO, and I can't change insurance coverage just yet (I wonder if I could get a waiver if a local doctor said I need that, hmmm, guess I could call and ask), and I have no idea what it would cost to see them out of pocket (the plane flight and hotel I can manage, but the doctors costs are what I'm thinking might be prohibitive - - anyone know what it would cost if one didn't have insurance?). So I'm going to work locally first, but see another allergist if for no reason than to get a second opinion on treatment, and then hoping I can hold out for Dr. Weber, who apparently does know something about mast cell activation (I hope). Yes, I am still pretty darn miserable -- in fact, sitting here flushing hot because I'm due for my Atarax does before bedtime, so it really is making a difference, but not seeming to settle things down much and I can't stay on this much med forever.

Carol

[Maiysa]

Sorry to chime in on your thread...but I've asked this question twice on the board and can't get a response. I have read every MCAD thread and just have a quick question if someone can answer. I read that even though tryptase is normal, people still are considered to have MCAD. I wanted to ask how did one arrive at that diagnosis? Also, if my tryptase level was 11 and the normal is 1-10. Is that an indication of something? The allergist said, it doesn't mean anything and didn't do another test for MCAD. Said, he doesn't think I have it. I was sure this was my problem after a few people wrote to me to tell me to check into it...but what do I know. Just trying to figure out why I'm flushing and having sweating reactions to everything from food to menstrual cycles, to just being too happy or too tired.

[POTSMama]

Maiysa,

I wish I knew the answer to your question - - I am not a medical doctor, so all I can tell you is what I've learned researching MCAD like crazy right now since I think that is what I have along with my POTS also. I don't think there is a specific diagnostic criteria that everyone agrees to, but a recent 2011 article by Hamilton et al. comes up with some approaches, and there is that article by the Vanderbilt group linking MCAD and hyperadrenergic POTS. What I have been doing is printing out some of these articles and giving them to my PCP and local allergist (happy to share with you if I can figure out how on this board we can email each other). The main nitial screening tests are 24 hour urine for n-methyl histamine (if I'm remembering that right), sometimes for prostaglandins, and the tryptase test. But I've read that sometimes even a patient with mastocytosis may not have elevated tryptase. I think based on my readings, again if I'm recalling correctly, that the new diagnositic criteria proposed by Hamilton et al is just over 11 for MCAD, but those levels can fluctuate if you don't get a sample taken right after a flushing flare. So all in all, I think the diagnosis is made by exclusion - - they rule out pheochromocytoma (with a 24 hour urine test), carcinoid cancer (also a 24 hour urine sample but a different test) and obvious mastocytosis (tryptase really high) and look at your symptoms. Then they treat you as if it's MCAD by putting you on the antihistamines and other things and if you respond well, it is kind of confirming. That's how I understand it anyway, but again I am not a medical doctor, just a Ph.D in an unrelated field.

I too tested negative for tryptase level for mastocytosis, but that doesn't mean I don't have MCAD according to what I've been reading - as I understand it, the tryptase level needs to be checked right after a bad flushing episode as well as histamine in a 24 hour urine sample (some say 4 hours), and when my tryptase was checked I was not having an episode for the two days before. So I have a standing lab order for these - - but I'm on so much antihistamines that I am not having a bad flushing episode (except late at night when the lab's closed) so it's really annoying. I am going to a new allergist/immunologist end of January who supposedly works with mastocytosis, and hoping she's also versed in MCAD or will call and consult with Dr. Castells in Boston. Meanwhile I must work with the allergist I have, and he's not convinced I have MCAD but is willing at least to consider it. Good luck and keep us informed how it goes for you!

Carol

[juliegee]

http://content.karge...roduktNr=224161

This is the closest thing we have to diagnostic criteria for MCAD. Note this is only a consensus proposal. This proposal does not allow any room for the clinical presentation. Laboratory PROOF is necessary for a DX. The authors (in the full text) even go so far as to say treatment MAY be administered in life or death situations w/o laboratory proof Gee, thanks fellas. Without daily treatment, I WOULD be in a life or death situation...

http://www.jhoonline...6-8722-4-10.pdf

This is a much more comprehensive set of diagnostic criteria that INCLUDES the clinical presentation & a "unique constellation of symptoms." This article was published first. It appears that Dr. Afrin, et al are working to broaden the above consensus. As with all new diagnosis, this has become quite controversial with strong proponents on both sides.

[Maiysa]

Thank you Carol and Julie, this is all very helpful. I am going to call Juanita Anderson in California to see if they take my insurance. Just to get some different testing. Carol, I see you wrote that the level of 11 is considered possibility for MCAD, so interesting since my doctor said don't worry about it, it's nothing. Also, I was not having any incident at the time, so maybe that's my norm...I don't know. But thank you...even though your PH.D is in an unrelated field it helps. Does it count that I used to be a nurse on Chicago Hope? haha. Just a stand in and extra. May I ask, do you still work? This is a terrible situation to be in isn't it. I have not been able to work for 5 years and I made such great money, so it's my dream to get back to work someday..soon! Thank you Julie for the awesome articles. Very helpful. You are so thoughtful to post them.

[Serbo]

Hi all

Wasn't sure which thread to post it seems there are lots of MCAD threads now!

Julie - I'm sorry to hear about your death in the family.

For Issie, Im non' hyper pots, however adrenaline testing i had was from lying to sitting so may need a repeat.

I am still pursuing a very probable MCAD diagnosis following an allergic reaction to a tiny dose of Fludro, a pro biotic and then seemingly everything!

So far I have had 2 random urine Methyl Histamine samples taken a week apart, both at around 600 or 301 methyl hist/creatine ratio. I actually felt non reactive when they were taken, no hives or anything. Tryptase was normal at 2.51 both times. Apparently my RAST test shows that i'm mainly reactive to grasses, and immunoglobulin E level is 128 KIU/L (Not sure how to interpret that?).

Next tests are repeat Methyl Histamine and Diamine oxidase testing.

In the UK they do not do 4 hour collections for methyl Hist, but Dr has suggested now that he has base readings for me to expose myself to stimulus before next sample.

Some questions for those that are diagnosed/suspected MCAD:

Do you react to non typical allergens, e.g petrol/diesel/chemical smell? Is your reaction a typical allergic one or nausea/BP drop etc?

Have your Dr's talked to you about chemical sensitivity disorders?

I ask because i'm not sure if there's a cross over here between chemical sensitivity disorders and MCAD, or is it even the same thing? I haven't yet found an anti histamine that i can take and am extremely reactive to drugs so the Dr thinks i may have this to.

I read that with MCAD people react in 2 ways, those that have essentially anaphlaxis in reaction to stimuli and big increase in methyl histamine reading, or those that are in a chronic state, High base line methyl histamine and although reactive do not have anaphylaxis.

One other question - How do you all react to after shave/perfume? I got in a taxi today and the driver had OD'd on aftershave, as soon as i got in it was as if i breathed it all in. Big warm feeling, and sudden tachy almost instantly, followed by irritated throat i think, found myself coughing a lot. Obviously had a reaction, could breath through my nose normally but throat was irritated. If one was in anaphylaxis presumably breathing through the nose easily wouldn't be possible, or you'd feel tight in your chest? - What i'm getting at is, i don't know if that was a chemical sensitivity response, or an MCAD one or even the same thing!!?

Had a real stressful week at work and with Dr's appointments/travelling etc, and noticed that stress can dictate how responsive i am to stimulus (e.g dogs), and even cause facial flushing/rashes.

Has there been research done on the role of pro longed stress/anxiety/trauma and effect on MCAD/Chemical sensitivity? Cant help but feel there's a link here.

My allergist asked me about breathing during reactions. I only think i have ever had breathing problems once, and even then possibly could have been a panic response due to the sudden reaction, but can some one please tell me what true breathing difficulties feel like during an attack? i told him about and doesn't think it's necessary to pursue epi pen based on my account. May even be to sensitive to the Epi pen anyway?

sorry for the long rambling post, but needed to vent after this week. Feeling like a medical anomaly with pots/eds III, mcad (?), diabetes insipidus, and a chemical sensitivity problem. Hoping that Nasalcrom helps when it's prescribed

Have a good christmas everyone!

Aaron

[issie]

Aaron,

I have sensitvities to smells too and gasoline and oil definitely make me sick. Where I grew up there were allot of paper mills and chemicals in the air. I don't know if that had anything to do with this MCAD stuff. But, I've always reacted to certain things and those are some of them.

I also have reactions to foods - but that's hit and miss. Sometimes I'm okay with them and other times they will make me very sick. I think that's the reaction that MCAD can take - you're not truely allergic, but something triggers the mast cells to over react and you never know what that will happen with. With a true allergy it will happen every time. Recently, I've started having hives. This is a new thing for me - not had this before. So, don't know what that is all about.

It's just another piece to the puzzle.

Can't you get anti-histamines over the counter there? Try something like Claritin and Tagament. I was told to start with an H1 blocker and then if that wasn't enough add the H2. And then if that wasn't enough the NasalCrom. Then if that's still not enough something like Singular. They said to add one thing at a time, because one may be enough - depends on what the issues are.

Issie

[Serbo]

Thanks for your reply Issie.

I am exactly the same with food. some times they trigger a reaction, some times they dont.

You can get over the counter histamines here but I have had some issues with them to, so waiting until all test results are in place taken at baseline to decide how to proceed.

Zirtek made me have drop attacks and tachy, ended up in hospital until it dyed down. Loratadine i can take if i have to, but it gives me tons of ectopic beats and i keep waking up during sleep on it. hopefully will find one which works!

[juliegee]

Aaron,

Yeah, smells are my worst triggers at the moment- febreeze (a fabric scent spray) and any strong cleaning or chemical product will close up my lungs. I get immediately dizzy, lightheaded, have trouble breathing, etc. GI stuff is also very common in anaphylaxis.

Your descriptions of how you react to smells is very consistent with anaphylaxis. I disagree with your doc. You SHOULD have an epi-pen with you at all times based on the descriptions of your reactions. During every anaphylactoid (not anaphylaxis as I have NO known allergies) attack I have ever had, I could always breathe. Tachy was my worst symptom- so bad that I was losing consciousness had I NOT used my epi-pen.

I can't comment on the specifics of your tests without norms. Is anything elevated? Glad you have a doc who is helping.

As far as the relationship between MCAD and Multiple Chemical Sensitivities/MCS....from what I've been able to discern; they are different names for the same malady. MCAD treatment involves calming mast cells with pharmaceuticals. MCS treatment seems to focus on avoiding the trigger. Makes sense to do both.

Glad you have a doc who is helping you to pursue this. There are MANY of us with the triad: POTS, MCAD & EDS. You are not alone Docs are taking notice. Dr Shibao at Vandy is the latest. Check out another online group for those with the triad (or who suspect they have the triad): http://uk.groups.yahoo.com/group/theelephantproject/

All the best-

Julie

[Serbo]

Thank you for the reply and the link Julie.

A wealth of information on that site! I shall spend a few days reading through it, and after my upcoming labs will be tooled with questions to ask my Dr.

I am not averse to using epi pen if i had to, but I need the Drs to be certain that the tachy is MCAD caused. Having had heart rhythm problems in the past I'd be worried a big dose of Eph could do me in if it wasn't needed!

Having had VT at 240 BPM whilst fluttering in and out of AF I can empathise with you, being in that state and close to pass out is not nice.

My baseline urine methyl histamine could be around 600, i hope not! But these 3 more separate samples I am giving should provide a good baseline, and for the third one i'm going to take an item covered in dog dander to the lab and give it a smell before the sample. A very crude way to induce a reaction, but in the UK the 4 hour urine collection test is not possible. Just single samples.

[juliegee]

Aaron-

I know exactly what you mean about being afraid to use the epi- I was terrified the first time. TACHY was my worst symptom and you are so right- epinepherine can greatly worsen tachy IF it is not induced by anaphylaxis. My husband stuck me the first time. The tachy was out-of-control and I felt certain I was about to die. Instead of sticking me for 10 secs. as prescribed, he stuck me for 5 secs. so we could gage whether or not it helped. INSTANTLY all of my symptoms disappeared. That was very telling for me.

I hope you can gather some definitive laboratory proof before you ever have to use your epi-pen. Maybe that will help give you the comfort you need before you have to make the decision. If and when you ever have to use the epi-pen, try to do it with someone else present like I did OR dial 911 & summon help before you stick yourself...just in case it worsens things. So sorry you are in this situation. Trust me, I get it.

Hugs-

Julie

[issie]

I was issued an epi pen too. Just in case.

Issie

[POTSMama]

Ditto on so many things. My MCAD symptoms seemed to have started with an anaphylactic-like reaction to an antibiotic, but then I developed the food pseudo-allergies (test negative by allergist, but clearly reactions). But most recently I realized that I was having episodes triggered while driving because of the smell of other car's exhaust coming into the car (I now make sure I keep a window part open and a distance from the car in front of me), and I had a reaction to the chemical smell of a room at the veterinarian's office just cleaned when I took my cat in for a checkup (had to ask to be put in another room).

When I get reactions, they can differ in terms of exact symptoms, but here's a typical example: This morning I had a BAD one even though a couple hours earlier I had taken 2 Atarax and a Zantac: I decided to try plain/regular oatmeal but put rice milk and brown sugar in with it. I took one bite and felt like my throat went "funny" (best I can do for description is say that it felt like it suddenly went dry and tight, then felt kind of mucous filled as I had to keep clearing my throat), then I started coughing hard (my lungs felt full of gunk) and my chest felt like an elephant was sitting on it and I couldn't breathe well, then I had to race to the bathroom twice for diarrhea, all the time getting a creepy/crawling feeling on my scalp (with a few itchy bumps in my hair area but no other hives), and my arms felt tingly, and then my cheeks and nose went cold and my chin/lip area went slightly numb, and I was lightheaded. Most concerning, my blood pressure was really volatile - - first it dropped out (according to the monitor readout I was 93 over 76, with a pulse of 86 one minute, then 75 over 54 with a 115 pulse the next minute (both while I was sitting and not moving), so I took a Benadryl and got my epi-pen and called for my husband who was home on holiday today and made him stay nearby. Had volatile BP/pulse for 1 1/2 hours with some weird readings where my systolic and diastolic were oddly close together (i.e., one reading right before the blood pressure dropped was 137/123 with a pulse of 86), and some readings high (e.g. 170 over 121 with a pulse of 90. So took another Benadryl. Took two hours but then I came back to normal BP/HR and all symptoms went away and I felt OK again I know these readings are real as I purchased an expensive monitor so that I could download the results to show my doc, and usually I get pretty stable normal readings when I'm not having an episode. Rest of the day I ate really "safe" foods (chicken, rice, steamed broccoli/cauliflower/carrots) and all symptoms went away and my BP is stable and I feel fine tonight, thank goodness. In fact, I felt fine most of the day except for that couple hours this morning, but those were pretty disabling hours. Anyone else's episodes anything like this?

I've also noticed that I am not as tachycardic now that I'm on high-dose antihistamines (I used to get HRs of 125-135 just walking across the floor and normal after sitting awhile), and in fact it concerns me that since I've been on these meds I get almost bradycardic (at least for me) at times with HRs like 45, and I feel like I can't breathe when that happens. Have any of you noticed that the antihistamines make your cardiac output or BP/pulse a bit low at times?.

Someone asked if I'm still working since this MCAD-like thing started a couple months ago on top of my hyper-POTS. In fact, I did take a 3-week medical leave from my office job, but agreed to work 1/2 time from my home computer, which has been great. But I have to go back to the office next Tuesday, and am concerned that it's going to be hard if I have a reaction like the above while at my desk at work. Fortunately, my bosses normally let me work 2 days a week at home anyway, and I only work 6 hour days the other 3 so that I can pick my kids up from school. So I am going to try going back, while continuing to see docs to figure this out, but if it's too hard, I will talk to my bosses about letting me either work more hours at home, or cut my job hours to half-time if I must (but I'd rather not as we need the income).

Someone mentioned stress as a trigger - - Other than this, things are going well for our family right now, but the last 2 years have been the hardest stress-wise in my entire life and I do wonder if this was what triggered this (my mother was ill a long time and died, my brother has been going downhill with early onset Parkinsons, my husband was laid off in the recession so I was working a full-time job during the week plus some Saturdays at the hospital to make ends meet, and our newly adopted Chinese daughter who had come home at the age of almost 8 was going through some behavior problems). My husband is now reemployed, thank God, my newest daughter is doing reasonably well and adjusted now, and things have been looking up as we were getting ready to sell our house and move to a nicer/bigger one. But this hitting has made me reevalluate my life and how I might reduce stress so I can get past this and try to avoid flares.

Sorry so long, Carol

[Serbo]

^ i'm sure this hypersensitive state we face is not helped by stress.

I can induce facial flushing, tachy, rash etc from stress. Even at these times i feel like i haven't had a reaction, those around me including Dr's have asked what i had just reacted to!

Each time i get these MCAD flares it's due to stress/stimulation, when i'm not in a flare i can stand by my dogs and be comfortably in the same room as them (not able to pick them up yet), but then during a flare can't even stand still for 30 seconds next to their beds without a sudden BP drop.

As i can't take any drugs for this, i have to be honest, during reactions only 2 things help, lying down and meditating or having a shower, not sure why but it always seems to help.

Carol - Are you not on MAST cell stabilisers? Nasolcrom etc, sounds like you might benefit from the gastric version, gastrocrom i think its called. not sure.

Julie - will pursue the pen, your right, if ever at the stage where it has to be used I'd want to call an ambulance anyway.

Does anyone wear medical bracelets or the like which disclose the MCAD diagnosis? As it's so niche i'm not sure that a paramedic would be aware of it or MCS's implications, i.e hyper sensitivity to drugs. At the same time to simplify i wouldn't want to put on the bracelet that i had a true allergy to certain drugs, which in a car wreck or something could save your life.

[juliegee]

Oh Carol-

Yes, yes, yes, you've brought back some awful memories- sounds so similar to my attacks... the crazy mucous just pouring out- sometimes in my lungs too. The weird numbness on my face. (Last winter I had that for a month.) The volatile BP and HR. It is so frightening. I also went through a patch where I was allergic to my car. It was actually a cleaner I had used to get a spot out on the car mat, but it took me forever to figure that out. My throat began to close up every time I tried to drive anywhere. Keep your epi-pen close.

Your reduced HR is concerning. I think much of your tachy is caused by the MCAD. The fact that that is improving with antihistamines is good, BUT the extremely high doses you are taking could be depressing your central nervous system- that's not good. I know you are working to get to a new mast cell doc. Do whatever it takes to be seen pronto. It would also be good if that doc would conference with Dr. Castell's in Boston OR maybe you could arrange a phone consult. (Tape record it for your new doc as she will recommend many tests, treatment options, etc.)

I am very calm & controlled, but when I was as sick as you, I actually burst into tears at my allergist's office. I was at my wit's end & felt like I was on a roller coaster- so out of control. What you are going through is terrifying. I am sending good thoughts, hugs & prayers your way.

Aaron,

Yes, you are right. We should all wear a Medic-Alert bracelet...but I don't. I have too much stuff that NEEDS to be shared. A geneticist that I saw at Emory wanted me to wear one that warned of vascular blow-outs because of my strong family history- without a DX. (I don't have VEDS.) I have seen companies that have a website address posted on the bracelet that links the paramedics to your profile. THAT's what we need.

So sorry you are going through this too. Hope you find a med regimen that you can tolerate & that helps.

Julie

[Maiysa]

Question? I might get this wrong, but I thought I read on this blog that if you have allergies then you don't have MCAD. Is that right? I did the blood allergy test when I went into anaphylaxic shock in 2006 and it only showed peanuts which I had not had any. Then I went into anaphylaxic again a few days later. Anyhow, so I have allergies obviously. When I was a kid I did the needle poke allergy test and of course they all swelled up and they said well you are just slightly allergic to a lot of things but nothing seriously. Anyhow, my question is....if I have allergies then it's not MCAD? I had a slight reaction last night and went to go get the tryptase test early this morning at Quick Care, but they opened too late past my reaction and the nurse on the phone said today was going to be like black Friday at Walmart when they open those doors. So I just took a children's claritin instead. I have been up most of the night and have so much to do today and trying to stay awake for Santa tonight is a lot.

[juliegee]

Maiysa-

You CAN have both traditional allergies and MCAD, just a bit more difficult to tease out. Do you know what your IgE number is? That's a blood test that indicates your exposure to allergens. A high number usually indicates that you have many traditional allergies.

Getting current allergy testing (if you haven't done it in several years) might be a good idea- both skin testing and bloods (RAST) for known allergens would be very telling. For instance, if your testing indicates you are allergic to peanuts only and you have a reaction & have NOT been exposed to peanuts for a long time- MCAD should be considered.

And, YES, all women masties will testify that our cycle makes everything MUCH worse. I had a uterine embolization that pushed me into early menopause- I use a hormone patch now AND have never felt better.

So sorry you are dealing with all of this.

Hugs-

Julie

[Serbo]

off to look for a medical/bracelet chain in the new year once i have a clearer picture.

WRT traditional allergies MCAD aside, please could someone help me decipher this from my derma. i don't have results just this letter but i'll be chasing for results in the new year:

"I enclose the result of this man's immunoglobulin E level that creeps in to the atopic range with a value of 128 KIU/L. This is a lowish increase however but does indicate mild atopic susceptibility. The RAST test shows he is reactive to grasses so that you would expect upper respiratory tract problems to be the main symptom."

The last part makes sense, i have hay fever, but not sure what to take from his statement in regards to other allergies or what the immunoglobulin E level means.

anyway - happy Christmas all, hope it's as good as it can be . Went out for a walk earlier and noticed how clearly i can smell tress, hedges, bushes etc, and although it made me light headed and dizzy it's a stark contrast to most of those around me who are bunged up with colds and flu and can't smell a thing!

[Serbo]

Carol - Also, rice milk is the same for me, goes straight through me. No reaction other than not being able to digest it previously. it's so sweet, maybe something to do with the sugar. Am better with soy milk but don't really drink it or eat soy these days.

[issie]

Serbo,

My husband won't use anything with soy in the label - feels it's not good for guys because it can up the estrogen content and imbalance the hormones.

Issie

[issie]

Forgot to add, as for medical alert tags - I have them on my key ring and mine says "See Wallet Card". I have a list of what's wrong with me with a DPA with emergency numbers of people to call. I also included the little card on what dysautonomia is that you can find on the dynakids site. That way we're covered. They usually look in your wallet for your ID any way.

Issie

[POTSMama]

Julie (Mack's Mom),

Yes, your mention of perhaps some kind of CNS suppression from too many antihistamines is what I'm worried about. I've never had BPs or HRs this consistently low, so I'm going to cut back on Atarax until I have a chance to talk to the doc and see the new one. May leave me flushing more, but I don't like at all that feeling of too low BP/HR; in fact, I feel better when it's higher. 8 25 mg Atarax prescribed just seems like too much. I had a terrible day today even though I ate safe foods (chicken, rice, steamed broccoli) and took all my meds - - I wonder if it was all the cooking smells (everyone else at the nice Christmas dinner but I had only rice cereal and felt very deprived) or the kids laughing loudly and pounding around the house (I was delighted to see them so happy, but it seemed to rev my system) or if I'm now unable to eat the same foods now. I'm going to shoot for 6 Atarax tomorrow and see how it goes. I will also be hounding the new doc's office (and having my PCP call) to try to get me in sooner.

Issie,

Good thought about making sure that if I see someone sooner, I can still get in later to the doc that others say knows something about MCAD. The one I picked out to see now does mention mastocytosis, so maybe that's a good sign.

Thanks everyone. I think if I didn't have this site to read from and talk to all of you, I'd go insane. It's good to know that the weird symptoms I'm having are not unheard of!

Happy holidays, Carol

[issie]

POTSMama,

You know, I've figured out that I'm doing better not having any type of grains. I don't know why, but rice seems to affect me as much as wheat. Sad, but true. If I only have grains once in a blue moon - I do better.

I also wonder if a constant use of any type of antihistimines - may be making us more sensitive to the release of histamines. I wonder if we'd do better trying to cycle them. Maybe then our bodies wouldn't react so strongly all the time to things. I don't know if it would even be possible to cycle them - especially for those that are so sensitive to histamines - but just thinking out loud. I know vit C and quercetin are supposed to help with histamines. Wonder if upping the amount of those would help to lower the amount of meds used? I think I'll give that a try.

Issie

[juliegee]

Are we all HyperPOTS that have this MCAD disorder? Reason I asked, is I'm starting on Lorsartan and it's supposed to help the high bp's and (according to an old post I read - MCAD issues). I can't find anything saying that - from studies. Mack's MOM - Julie, it was on one of your comments - do you have a research article showing that it should help with MCAD? I'm working with an allergist/immunologist at Mayo and my neuro just called in the Lorsartan for me to try. Trying to get data to support the idea that this may help. I know that Lorsartan will vasodilate the veins and should help with blood flow and oxygen - but didn't realize there was a connection to MCAD with it too.

Issie

Issie-

I realize that I am late answering your question and you have since failed on the lorsartan trial, but I finally had the time to dig through some old studies and found this one below. I find in very pertinent to you with your Kounis Syndrome & intermittent hypertension:

http://www.fasebj.or...ct/21/6/A1253-a

Angiotensin II mediated activation of cardiac mast cells.

Stephen M. Biscotte , Scott P. Levick , Michelle L. Bertling , Loren G. Morgan , Joseph S. Janicki and Gregory L. Brower

Cell and Developmental Biology and Anatomy, University of South Carolina, School of Medicine, Columbia, SC, 29208

ABSTRACT

A local Renin Angiotensin System (RAS) acts in an autocrine/paracrine manner in the heart to induce pathological changes such as hypertrophy and fibrosis. Cardiac mast cells play an important role in regulation of the local RAS through the release of renin and chymase, enzymes capable of producing angiotensin II from angiotensinogen. Accordingly, it is plausible that angiotensin II may act via a negative feedback mechanism to regulate mast cell degranulation. In order to test this hypothesis, rat cardiac mast cells were isolated and examined for expression of AT₁ and AT₂ receptors by western blotting. Isolated cardiac mast cells were also treated with angiotensin II and degranulation was assessed by ELISA measurement of histamine release. Normal cardiac mast cells express both the AT₁ and AT₂ receptors. Incubation with angiotensin II at concentrations of 1 x 10^–10 and 1 x 10^–6 induced a concentration dependent histamine release from cardiac mast cells of 23.7 ± 8.2 % and 32.8 ± 27.4 %, respectively. These findings indicate that angiotensin II is a potent secretagogue causing mast cell degranulation. This angiotensin II mediated activation of mast cells may constitute a positive feedback mechanism contributing to the maintenance of the sustained elevations in tissue levels of angiotensin II seen in hypertension.

[Serbo]

Got hit hard on Friday by some sort of a reaction to oats, ended up in hospital. No breathing issues, but was drenched in sweat, shaking with cold and a very low temperature, facial flushing, body rashes etc. Was quite scary as not hd that before. ER doc wanted to give me adrenaline and a steroid but by the time i got to see them things had started to calm down so i declined because of medicine sensitivities and not being in anaphylaxis.

Felt very faint all of yesterday, had a good sleep and been better today. went for a couple of hours worth of power walking today!

Annoyingly though ER docs couldn't so serum tryptase or urine methyl histamine sample, but i did get them both done on saturday AM.

Only started feeling rough yesterday after the blood draw, think i had so much blood removed the last couple of days it did me in!

I am certain i have MCAD/MCS, even the smell of air freshner made me feel dizzy for about an hour today, same with polish, aftershave, petrol. Part of the problem is anxiety though not knowing what is a genuine trigger and what is not. Hopefully results this week or next.

My POTS Dr sent me a paper he wrote yesterday on POTS and EDS III, it's 13 pages and due to published in the neurology section of the Nature journal. Might have already been published. Interesting the link between EDS, POTS and MCAD. It might be that it's EDS/MCAD that sit together and POTS alongside.