Mcad & Autoimmune Issues - Follow-Up Visit W/dr. At Mayo, Az

[issie]

Well, had the follow-up visit with Dr. Lewis at Mayo, AZ. Trying to figure out the MCAD and autoimmune issues. My IGG levels seem to be dropping while my auto-immune system is in over drive. Why? They are at separate ends of the spectrum. Dr. Lewis didn't seem to have an answer for that. In fact, his words, 'I wish I had an answer to your questions and others - I'd sleep better if I did'.

He is a very patient and caring doctor who really does look into things for you. But he said he just doesn't get enough patients to be able to come up with an answer. All of us that have gone to him have been different in our manifestations and there just isn't enough patients to come to a conclusion. He feels that I may be overly sensitive and that activates the mast cells and you never know when that will happen. He said that in order to catch it you have to go to the hospital within one hour and have specific test run and start a 24 hour urine test for methyl histamine. I have the jug and the order - if I have a bad flare and can get there fast enough. But, if they can't catch it - they (Mayo or this doc) can't really diagnose it as such. So, have the probable or possible MCAD dx - but nothing firm.

He mentioned two doctors that he says have more patients and they can/will give more definitive diagnosis than he can. Dr. Akin was one of them - can't remember the other.

He wants to run my IGG levels again in a few months because of them dropping - but right now says they are not too low to worry. But, wonders which direction they will go. He said they can fluctuate even during the day. So, have to do several test to determine if a drop is accurate or just a fluctuation.

Wish I had more and better news to tell you. But, as for MCAD don't think I will be able to get much more than I already have. I asked what would he do if it were confirmed - answer - Exactly what I'm already doing. The H1, H2 and Cromolyn. Sometimes Singular and if it's really really bad - they use heavy duty drugs that they use for chemo only in very small doses. So, unless I get allot worse - guess I'll just keep using my Claritin daily and Tagament when I'm really bad and then the NasalCrom if needed.

Issie

[POTSMama]

Issie,

Sorry to hear you didn't get more definitive answers, but at least he was responsive and open-minded. I think with all the reading I've been doing and online researching and talking to others, that "probable" MCAD is where I'm at too. All my symptoms fit MCAD and I am the hyperadrenergic POTS form that the Vandy docs seem to think is usually associated with this.

I too have the standing order for tryptase blood draw and 24 hour urine methyl histamine (need to go pick up my jug), but it's hard to manage having a severe episode while on so much antihistamines and having that happen when the lab is open, and when I'm feeling able to drive (not always true after a severe episode) or someone home with me. So a whole cascade of things would have to go right for me to catch that post-episode tryptase and histamine, and I am afraid to get off the antihistamines long enough to do this given that I did have one anaphylactic (or nearly) episode. My local allergist said the same as yours - - that he'd treat it the same anyway - - but I'd sure like to get a firm diagnosis just to be sure. Meanwhile I'm trying to read everything, putting a notebook together on MCAD/POTS articles, and becoming my own "expert" - - I think that's needed with such a rare disorder.

And I'm pursuing a 2nd, more knowledgeable opinion. Since Dr. Weber at National Jewish hospital here in Denver is out until at least March with a very bad broken leg (he was mentioned by Mack's mom Julie as a possibility of someone who knows something about MCAD), I have gone ahead and made an appointment with a Dr. Truong at National Jewish, because her profile online says, among other conditions, that she treats mastocytosis and I can get in to see her near the end of January (sooner if they have a cancellation). I just hope she's open minded to the idea of MCAD since I know that is controversial with allergists/immunologists, and I'm hoping she'll have a better idea of what meds/tests to use than my current allergist, who I've gotten the feeling knows very little and is winging it on this topic I am only going to see my current allergist (who I've not been tht impressed with and he doesn't take me seriously enough) until I get in with a specialist who seems more well versed.

Carol

[Maiysa]

Issie,

Thank you so much for the update. I know I've told you this before, we have many symptoms in common. I was curious what the doctors would find in your case, but of course it sounds like you didn't really get anywhere. But it's nice that they are treating you anyhow and trying to help. He does sound like he cares. So unusual to find. I'm sorry you didn't get more answers. I know it's probably a bit disappointing for you. Do you also see a dysatuonomia doctor there? Not sure if I've asked you that before.

I would worry if I had this MCAD, because I can only take a 1/16 of a children's Claritiin. It does something neurologically and makes me stiffen up and have some strange flushing in my head. I suppose it wouldn't matter anyhow if I got diagnosed. I'm also on a tenth of a children's dose of zantac, terrible stomach issues. Although this medication makes me feel better it also gives me some strange feeling. And I ended up in the ER from the nasal spray Flonase. My system went on high alert and my lips swelled. So strange. How could I be allergic to allergy pills? I guess anything is possible.

Thank you for posting Issie. I hope you feel better soon. Sorry you are having to go through this. Wishing you a Merry Christmas and Happy New Year.

Maiysa

[issie]

Carol,

One thing to think about - usually in a doctors practice - if you see one doctor and don't get any where, you are stuck with that doctor. They usually won't let you change doctors. If the other doctor has more knowledge - it might be worth waiting.

I also asked about being on meds - because I don't want to come off either. He said if we are in a flare, it will show up with medicine. Usually, it's only in the bone morrow and if there is a flare - it will show up in the blood - where it's not supposed to be.

Maiysa,

Sorry, you are having such horrible reactions to everything. I've been that bad before and did a strict elimination diet and rotation diet. That helped a whole lot. With the childrens versions of meds there is usually colors and flavorings also they may put aspartame in them - because they are usually chewable or liquid. I react strongly to aspartame - have issues with glutamates. That might be causing some of your problems. I'm also HyperPOTS and I do think more of us with that type of POTS has these MCAD issues.

Hope you both feel better soon and get some things figured out.

Issie

[Maiysa]

Hi Carol,

Yes, I can't take aspartame as well. I get very sick. Actually, the children's ibuprofen is the only thing I can take. IT's the adult meds that I can't take. I have tried Aleve, but I get so dizzy and asprin and motrin. It's really silly. I don't have pots, but did have hyper pots while I was in the midst of a lung infection for 2 years. But now it's dx as orthostatic intolerance and autonomic neuropathy. Although when I stand up my blood pressure goes up, not down. And sometimes it goes down. It doesn't make sense. I did see on one paper about MCAD that it can cause a neuropathy. NOt sure if that would be related. Also, a question for you, did you have a bone marrow biopsy? If so, does it hurt terribly? They did mention that I might need one. Ugh! I did have a spinal tap last year and as long as it's not as painful as that, I'm okay. But if it is, I will just have to suck it up. My shins hurt terribly, but I think it's from long bouts of anemia. Anyhow, thank you for your information.

Maiysa

[issie]

Maiysa,

That was me saying about the aspartame. As for the question about bone marrow biopsy. I'm not as bad as you girls and don't want to go there. They say it hurts really bad because they have to go into the bone and you can't deaden the bone. But, if I were as bad as you if it might give you the answers you need - maybe. There are others who have decided to just do the treatment and not have the confirmation be so positive. You have to decide if it's that important to you for there to be concrete evidence of the issue. I decided since the treatment would be the same regardless of whether or not we have the concrete evidence - just go with it as a probability.

I read another post by you about being a stand-in nurse - wish that did count. I know you do wish you could get back to acting. People in the arts show their creativity in the field they choose and I know you must miss it. Hoping for brighter days for you. Maybe you can do some other form of art - or do sound overs - you can sit to do those or maybe commercials. Only thing, you have to be well enough to get the job in the first place and that takes effort. Maybe some other connections could get you in.

Issie

[juliegee]

Thanks for sharing, Issie. We do seem to have a lot in common. My IgG is quite low as well- 475 at last check. I need to do another check soon. What is your number? I ask as I have come across so many of us with mast cell disorders and an impaired immune system. Even mast cell specialists say it is not related...how could it not be?

You say that your autoimmune numbers are high- what testing have you had? My ANA is always normal.

My thought is that something (a virus, surgery, car accident, emotional trauma, etc.) sets us off and our immune systems are put on "high alert." Our mast cells then become overly responsive and react to normal stimuli as though it were harmful. After years of being so heightened, the immune system ultimately burns out-hence the low IgG- despite the very reactive mast cells. Maybe the overly reactive mast cells are a compensatory response?

[issie]

Julie,

Your IGG numbers are lower than mine - Im around 600 for the total - but my subclass IGG1 levels are in the low 300's. My IGG levels have dropped from the last time he checked them about 5 months ago. So not sure if they are dropping or they just picked them up at a lower level in the fluctuation.

As for autoimmune, I have vitiligo that is spreading rapidly and also alopecia. The allergy/immunologist said that is a definite autoimmune issue and with the IGG being low - which is on one end of the scale and the obvious over activation of the autoimmune system - not sure why.

Don't know the reason for these dysfunctions and probably never will. It sounded to me like the doctor didn't think it was something that allot of research was going to go into. He said the cost would be so high for the few that it would benefit. It comes down to money. He said if it were something to do with more common illnesses than they would put the work in - otherwise, there are only a few doctors really trying to figure it out. He said he was sad that it was this way and science is continuing to advance. But, right now they don't really know that much and there is allot of different thoughts on it - both favorable and unfavorable. He is a doctor that wants more concrete, scientific evidence - this is hard to catch with MCAD. He, however, does believe that it exist and that it is real and can happen. It's just hard to catch and prove.

Issie

[juliegee]

I think it is very common. I think it is the basis for the entity called Chronic Fatigue Syndrome (CFS) Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), myalgic encephalomyelitis (ME.) It is estimated that around 20 million people worldwide are suffers. I think the vast majority of dysautonomia patients fall into this category. Unfortunately, it boils down to semantics. We are all walking around with our various DXes depending on which physician we see and which symptom is the worst. If the scientific community understood the vast number of affected patients, the research would happen.

And, yes, your doc is so right, it is very hard to catch laboratory proof of MCAD. The mediators released by degranulating mast cells have a very short shelf life. Very few hospitals can run the tests and most patients are way too sick to go to the hospital following an episode.

Elaborating on my theory, MCAD, at it's essence, is an auto-immune condition itself. Our overly reactive mast cells are trying to protect our bodies (the host) from anything they perceive as harmful and end up actually hurting the host... seems to all stem from an immune system gone wonky.

[Katybug]

HI Ladies,

I have a couple of things for you:

1) I have a young lady that I taught horseback riding to until last yr when I got sick who is now in a special Masters Pre-Med program at Tufts U. She says that they having been being taught quite a bit about mast cell disorders and EDS. I was actually surprised to hear how extensively they have covered these topics. I bring it up only to maybe add some hope to our plight that we may have a younger generation of doctors coming that are much more knowledgeable about these issues and will help bring fresh eyes and energized spirit to the hunt for answers. She is actually going to do her Masters thesis in Immunology becuase she finds me and my ailments so curious. I just think it's really pretty cool that they are teaching about it.

2) I have a question for you. I just started with an Immunologist 2 weeks ago. I gave him 65 pages of labs and docs notes from this yr and he was pretty open minded that there is something wrong. He said he didn't want to focus on MCAD because he might miss something else. He started by doing allergy testing for environmental allergens which was a short test cause I am really allergic to the world - literally! Anyway, he also sent me for same day blood work for lots of things...11 viles of blood. Here's what it comes down to...if he can't find anything and tries to sell me on allergy shots I really feel like that would not be a good option. (I had allergy shots as a teenager and had a very bad reaction that ended in 3 months of high dose steroids and antihistamines.) Also, it seems to me from my understanding of MCAD (which I have almost every feature of) that allergy shots could be counter-productive and I might have another bad reaction. Do you have any knowledge of how allergy shots may or may not work in an MCAD patient? Are they contraindicated? It's all so complicated.

Thanks,

Katie

[issie]

Katie,

That's good to hear. I hope that some of these complex things will be figured out.

As for shots, not sure how to answer. If you are truly allergic that is different than what we are calling mast cell activation disorder. With that type of disorder we are NOT allergic - our mast cells are just over active and we never know what they are going to go on the rampage over and just attack.

I had all the allergy test and was negative on them. But, some of them - especially shrimp I have deadly anaphylactics to and my throat swells closed and my nose and my face swells up. So, despite showing negative I always have this reaction. I am allergic to shrimp even though his test said otherwise. I asked "why", he said that the serum has been broken down and some of the proteins may not be there and there is a percentage of error in allergy test. I said well, that one was definitely wrong. When I eat anything in the bird family I react with itching. So allergy testing, in my opinion isn't that accurate. That being said, if you are testing positive to something I'd take that as being positive. They say that shots will help this reaction.

With MCAD, we don't test positive to things . . .but, we react any way. So, we have to block the histamine reaction to stop the mast cells from over reacting. It can still happen even with meds. It's not always food that creates this either - it can be emotions, arousal, exercise etc. So, not sure what allergy shots could do for this. Don't think it'd be possible to create something to help with things you never know what will cause the problem - for.

I know that was clear as mud. But, hope it helped a little. Maybe Julie has a take on this one.

Issie

[juliegee]

That's hopeful, Katie!!!

Nothing more to add to Issie's explanation. If you DO have true allergies, then THEY are the cause of your symptoms. All top dysautonomia agree that adequately treating allergies is VERY important in the treatment of POTS, etc. Can you have true allergies & mast cell activation? I guess, but if you have that many true allergies, a high IgE, etc. THAT is most likely the problem. Most of us with MCAD have NO allergies, but the same symptoms you have- even anaphylaxis.

Be VERY careful with shots given your history. Make sure the doc is well aware of that experience. Insist on minute doses & stay in the office 5-10 mins. longer than required just to be safe.

All the best-

Julie

[Katybug]

Thanks, Ladies!!

[Maiysa]

Issie, sorry, I wrote the name Carol, but meant to write Issie. I'm always in a fog. Sorry about that. Anyhow, thank you for your kind words. I haven't acted in years, because I get too dizzy, so that's out. But I was a writer on my off time and a skin care specialist full time. Hoping to get back to that someday soon. Thank you so much for the information about the bone marrow biopsy. Oh my gosh, that does sound terrible. I agree with you, just being treated as if it's positive is better than the bone marrow. This is interesting that you say this, because I realized this summer if I took a little bit of children's claritin, it helped with my flushing. I might just do that since that's all I can take anyhow.

Katie, I was going to tell you that I used to take allergy shots about 15 years ago. And I developed serious side affects and developed hives. I had to quit. So yes, you have to be careful if your immune system is over reactive. And for me the shots did nothing to make me feel better prior to that. But maybe other's have had better luck.

Cheers!

[bensman]

I don't have time to read the whole thread right now, but just wanted to say that at my appointment with Dr. Afrin I asked him if there was an autoimmune component to MCAS. I can't really remember everything he said (didn't have anyone with me for a 2nd set if ears), but he acknowledged there was. Next time I email him I could re-ask if you'd like me to. His responses are always detailed with great info.

He did do more autoimmune testing with the rest of the tests he ran on me.

Kate

[issie]

Kate,

Any and all information would be greatly appreciated.

Issie

[Chaos]

Katybug- I was asking the same thing about allergy shots but the consensus I got from the allergist at Mayo and a couple locally was that I couldn't do them when I was on the Beta Blocker for the POTS symptoms. Just something you might need to make sure your doc knows if you're still on the Metroprolol.

[Katybug]

Chaos,

Thanks for that. I never would have even considered that to be a problem.

Katie

[potsgirl]

I went through the allergy shots when I was much younger, about 11/12 years old. I was on them for about 3 1/2 years, and they did help with my allergies. I started a second course of them when I was a freshman in college. I wanted to point out that I would have reactions occasionally where I couldn't breathe - my throat would close up and they would need to give me a shot of adrenaline (?) to stop it. Anaphylactic shock?

My point is that sometimes you can have bad reactions, but they don't occur until a longer time period after your shot. I never reacted until about 45 minutes later, so eventually I had to stay at the clinic that long before they'd let me go. Much better than getting home and having a panicked kid and parent racing back to the ER!

Stay safe. I never could get up to more than 1/2 the usual dose. Just a thought, since a lot of us are so sensitive to medications. Good luck.

Jana

[Katybug]

Thanks Jana!