Appt W/ Immunologist Has Me Confused About The Allergy Vs. Mcad Issue

[Katybug]

Oh..where to start... Let me start by saying I still really like this Immunologist. I think he is open minded and is a "healer" not just a doctor because someone gave him a license. Also, let me apologize, this is gonna be a long one.

We talked for a long while. I spent half of that time with my head on his desk, leaving sweaty hand-prints, and fidgeting because I was having an acute attack of what ever this is that I have (I've decided POTS+ is a good name.). It was triggered by walking from the waiting room to his office (50 ft). I knew while waiting for him it was going to happen, I could feel it coming sitting in the waiting room. He did offer assistance but I told him we needed to keep going cause I was gonna run out of steam if we didn't. He asked what my goal is in seeing him and my answer was this, "I want to figure out if there is an underlying cause to my POTS and if there is, treat it the best we can in hopes of getting my life back."

He said well, "Good! Well, POTS isn't a diagnosis...it's a syndrome and you can't have this many symptoms going on at one time without having at least one disease process going on, maybe more. We need to treat what we know and see what symptoms we eliminate so we can then see if we need to do more diagnostics." (He wasn't being a jerk about POTS, just saying that he thinks there is something more sinister causing the POTS.) He then said, "You definitely have environmental allergies, we have no question about that. You also have mast cell involvement, I am sure but we can't really prove it anyway. It's really not a separate issue as they are related and go hand in hand. We are going to put you on an H1 and an H2 antihistamine and immunotherapy and see where we can get you with that. Then, we will see what else we need to look into." There was a lot more conversation reviewing my history, my current meds, my familial links to allergy and auto immune. I couldn't think very straight so I didn't ask nearly as much as usual...just tried to answer his questions thoroughly. I asked what the official Dx is and he said POTS and atopic allergic rhinitus. (That's POTS and "severe hayfever"!) I also inquired about the issue someone brought up to me about the allergy shots with a beta blocker and he said that is correct and we will have to be extremely careful.

So here's my issues:

1) If I do have mast cell issues, I would like that figured out and spelled out so future doctors, insurance co., and SSA take it seriously. I'm afrai they won't take "hayfever" very seriously. On the other hand, is that important or is it more important that he is basically treating for both possibilities and is really trying to get me better? Thoughts?

2) Here's my bloodwork and I don't really understand how it relates to the allergy vs. MCAD issues:

IGa = 99 Normal = 81-463

IGg = 707 Normal = 694 - 1618 (No abnormalities in my IGg subclasses)

IGm = 33 Normal = 48-271 ***Low***

Ige = 53 Normal = 0 - 114

No food allergies showed up even though we know I have clinical sensitivities.

Basophils and Lymphocytes all at normal levels

No natural immunity to pneomococcal infection

Good immunity to tetanus toxoid

Insight?

3) I am really scared to try these shots again because of the last time (and I usually have no fear abuot medical procedures.) I am torn between fear of it really going badly and the feeling of needing to try because I am not getting better on my current tx plan. What's a girl to do?

[juliegee]

Hi Katie-

He really does sound like a great doc- you are very lucky. Very open-minded. He is right. Mast cells are very much involved in all allergies. It looks like he DXed you with traditional IgE mediated allergies.

I have a question. Did he do any allergy testing? Is he relying on old allergy testing- how old? I notice that your IgE is NOT elevated...hmmmm.

Julie

[Katybug]

Hi Julie,

Yes, we did skin testing (all environmental allergens, no food) on my initial visit 2 wks. ago and I tested extremely allergic to all of the 17 allergens he tested. I also did the bloodwork immediately after leaving his office that same day. I thought it was kind of odd that my IgE was not at all evelated especially since I still had the welts all over my arms from the skin testing.

Katie

[anaphylaxing]

Wow it sounds like your doctor has a GREAT handle on this whole thing. I have ?MCAD and POTS and am really trying to get someone to acknowledge that they might be related. What exactly it is isn't a huge issue if you can find ways to treat it and feel better (which I haven't so keep me posted if you do!)

I think H1s and H2s sound like a really smart and safe idea.

What immunotherapy was he referring to?

[issie]

I was told that no immunity to pneumonia should show the IGG2 level subclass as being low. Mine is not - but I have no immunity to that either and it has dropped from my baseline test. My IGG1 levels have also dropped - but not my IGG2. I don't take vaccines and he is really concerned that I won't take the pneumonia vaccine - but I've seen what Gallium Barre does and it can be gotten by flu and pneumonia shots. (My dad got it from a flue vacinne. Don't want to take that chance - since it was gotten in my immediate family.) So, not sure what this all means. On the flip side - my autoimmune system is attacking me with vitiligo and alopecia - yet my IGG levels keep dropping.

With food allergies and environmental allergies usually the IGE levels are affected. I have these issues but those levels were okay. Maybe because I do take H1's regularly.

Issie

[juliegee]

Katie-

Perfect. With current allergy testing, this doc is working off of the best information. Perhaps your IgE wasn't elevated because (aside from the specific minute skin reactions) you weren't having a major reaction to anything.

I think you can very safely rest assured that you DO have traditional allergies. They are identified. The treatment he suggested is perfect- (H-1 & H-2.) The other thing you can do is work hard to avoid triggers. The tricky part for you is the immunotherapy...shots. With this doctor, I would try them. He knows you had a bad reaction in the past. He is aware of the BB's. As long as he gives you minute amounts & you stay in the office LONGER than recommended, I think it is worth a try. YOU CAN IMPROVE. That is huge. Getting this under control will improve your POTS.

Stop worrying about MCAD. You have the exact same symptoms, connections to POTS, etc. as we do- yours is just mediated by traditional(IgE)allergies. You should feel validated. You are in great hands AND you have a chance to improve...YAY!

Julie

[Katybug]

Thanks for the kind words and insights everyone! I think even writing the post let me let go of some of the fear.

anaphalaxing - The Immunotherapy he is referring to is allergy shots for the environmental allergies. I had these when I was 16 and had a bad reaction so I'm kind of holding my breathe this time around but I'm gonna try...we're just going to have to be super careful.

[Chaos]

Katybug- This doctor you found sounds good so he's probably explained this to you but it's my understanding that the issue with the allergy shots and Beta Blockers is that if you have an allergic reaction while on BBs the epinephrine they use to treat the reaction may not work...that's why it's contra-indicated to do the shots on BBs...at least according to the docs I've talked to. My allergist is telling me that there is an oral form of immunotherapy that is being used in Europe and he expects it to be available in a year or two here in the States. He says it doesn't have the same risks as the inject-able forms have so I could use them while on the BBs. You might want to ask your doc if he thinks the same thing. Especially if you had a prior bad reaction to the shots....it might be worth stalling on the shots if this other option will be available soon. That's what I'm doing currently anyway.

[songcanary]

The oral form is already here, it just isn't reimbursed by insurance companies. It's called sublingual immunotherapy (SLIT). I've been on this for a few years now for 11 foods, and this stuff really works. It costs me $44 per month for that number of foods. I am so lucky to have my allergist nearby; he's very knowledgeable in both conventional and alternative therapies.

[Chaos]

The oral form is already here, it just isn't reimbursed by insurance companies. It's called sublingual immunotherapy (SLIT). I've been on this for a few years now for 11 foods, and this stuff really works. It costs me $44 per month for that number of foods. I am so lucky to have my allergist nearby; he's very knowledgeable in both conventional and alternative therapies.

That's good to hear that you have already been on it. My doc says the thing that's holding it back is that in Europe they use the "extract" for one thing at a time but in the US they want to combine all the allergens into one "solution" like they do for the shots. Are you able to get one "solution" of the sublingual that has all your allergens included? Are you being treated for allergens other than foods?

[songcanary]

Yes, they mix all 11 extracts together in one little bottle All mine are for foods, but I know I have other allergies, especially to wool, metabisulfate and certain chemicals, but I am not being treated for any of those; I just avoid them.

I can't get tested for anything else at this point because I am on doxepin. I need to go off for six weeks before testing. I tried and only lasted 12 days before I got really sick again, and I had to resume it. Thank goodness I have some foods I can eat!

[Katybug]

Interesting information! I'll have to ask him about this. My understanding of the BB issue is the same as mentioned above. I also read several pieces of literature that stated there was some concern that a BB could actually increase your chance of a reaction BUT the research actually shows that not to be true.

[juliegee]

Not sure about that, Katie. Maybe it's just with mast cell disorders, but I was under the impression that beta blockers (and even calcium channel blockers to a lesser extent) will worsen allergies and asthma. My MCAD was GREATLY worsened with a BB, and even with a calcium channel blocker. I did have an anaphylactoid episode while on a BB and my epi-pen only worked for a short time. I had to go to the ER to get stabilized.

Julie

[issie]

That was my understanding of BB and MCAD - it could make it worse. Maybe because of what it blocks. If angiotensin is blocked it down regulates Noriepi and epinephrine which helps with allergies. I figured this out the hard way with blocking noriepi with Losartan an ARB. So, guess ARB's are not too good either. (This is all speculation - don't have any scientific proof other than ---ME being the guinea pig.) I got allot worse with the ARB and BB's.

Issie

[Katybug]

Yes, there are definite issues with treatment not working effectively if you have an anaphalactic reaction and you're on BB. There seems to be no question that epinephrine is not as effective if you are on a BB.

I was reading other research that was not showing a higher percentage of adverse reaction to allergy shots for people on BB, although the severity of a reaction can be worsened by a BB. I didn't look for anything that addresses allergies and MCAD in general...I was just looking at what the concerns are for the shots. I do still think this is not a very safe combo and really am just keeping my fingers crossed.

http://www.ncbi.nlm.nih.gov/pubmed/18377773

http://www.ncbi.nlm.nih.gov/pubmed/15753911

[juliegee]

Maybe I'm wrong, but I could have sworn that my Mayo allergist says that BB's are contraindicated for ALL patients with allergies and asthma (regardless of cause- IGE or MCA) due to amplification of symptoms...

[Katybug]

It wouldn't surprise me and you probably aren't wrong...there is so much conflicting info that I come across in a quest to educate myself. I'll have to go to Mayo's website and see what I can find. Either way, there definitely doesn't seem to be any controvery over the lack of efficacy of epi if you are on a BB, and, that's not good news.

I usually go through a stage with each new doctor when I feel like a lab rat and this is proving no exception. I have spoken to the POTS and cardio docs (for other reasons) about whether or not there are good alternatives for me other than the BB and they didn't feel like trying anything else was wise. Of course, that's before this came up with the Immunologist.

[juliegee]

I guess what I'm getting at....I wonder of your allergy symptoms might be greatly improved by NOT being on the BB? That was true for me. The only time I've ever had anaphylactoid episodes is when I was on a BB. THIS might be something to discuss with your doc. Often, our tachy is a compensatory mechanism to make up for leaky vasculature caused by allergic reactions. Masking that can worsen everything- better to address the underlying issue.

Just a thought

[Chaos]

I'm definitely WORSE off a BB even though I have an elevated IgE and traditional allergies. My neuro at Mayo has been weaning me down on the Propanalol over the past year but this last decrease in Oct. crossed a threshold that's making me feel awful.

The allergist I saw at Mayo talked about not doing shots while on the BB but didn't say anything about not being on it with my allergies and exercise induced asthma. Hmm....

[issie]

Chaos,

With propranalol you will have rebound hypertension with it as it gets lowered and out of your system. I had a horrible time trying to get off of it. It was too strong for me to take two times a day and just once caused the rebound hypertension to be horrible. Finally, I just had to stop it altogether and let my bp settle out on it's own without it. It wasn't fun. I liked the effects of the calm it created after I first took it - but then wham the end results weren't good for me.

Issie

[Chaos]

I also take it for a hand tremor. I was prepared for the rebound tachy but not all the other symptoms that have come up at this lower dose. Hypertension hasn't been a problem. My numbers are about 10 points higher but still plenty low.

When I was in college I was on a dose about 6 times higher than now and I didn't have any problems stopping it then.

Sorry Katiebug..didn't mean to highjack your thread!

[Katybug]

Chaos- No problem. I think we could all talk for hours about the what if's that go on with us. One thought just leads to another.

Julie - I wish it would be that easy! I actually had all of my symptoms before starting the BB. In fact, some of GI symptoms are less frequent now than prior to starting the BB (I have no idea if its related b/c I started the Florinef and Metoprolol at the same time or if I just haven't had a bad GI cycle in a little while). I always appreciate you trying though. This is how we learn.

I will say this...I'm gonna be a might bit angry if 4 yrs and 24 doctors later, the right answer is "take a Benadryl".