Macksmom Or Anyone Else.. Need Help With Mcad (Mast Cell Activation Disorder)

[DadJake]

Ok, so I'm told I have Lyme disease causing all of my symptoms. My testing wasn't that great, but clinically I have so many symptoms that I am being treated with antibiotics. After 5 days of Antibiotics, I have to stop as I start feeling very sick (Nausea, Malaise, Terrible Anxiety, Crying Jags, body aches, disequilibrium, etc.) Some of these symptoms are baseline symptoms, but they exacerbate like crazy with the antibiotics.

Before I even open my eyes each moring, my anxiety is going bad. I get out of bed and try and drink a little coffee to wake up my head.

Take today for example: I woke up and my legs were going all over the place in bed. My head felt weird inside (hard to explain), but feeling like I'm not getting any blood flow or something along those lines.

I took 1mg of Klonopin and 1mg of Xanax at the same time. I just started on Neurontin 300mg 2 x day. I also took a small piece of percocet to calm down my CNS. Well none of this worked. My anxiety was topped out even with all of that on boarde and I was barely sedated.

So, I said screw it, let me try some Benadryl about 30 min. later. I just took 25mg of liquid Benadryl and 5 min. later, my Anxiety is pretty much gone and only then do I start feeling fatigued. The crying goes away and my mood comes back a bit, still no where that is should be, but the despair and feeling like I'm dying is gone.

I'm googling all over the net on this MCAD and I see many symptoms, but I don't see anxiety as being a symptom. I did see something about Central Nervous System problems and even mood disturbances, but nothing about this crazy anxiety I get. I've been in the ER and given 3-4 mg of IV Ativan and I'm thinking they gave me placebo water injection as it does nothing and doesn't even sedate me.

I should also mention that I can't catch my breath while I'm having these attacks. I start breathing like someone with COPD, as in holding my breath, but not on purpose. I guess my body is trying to compensate some how.

I'm not sure if this is a symptom of Lyme and die off from toxins, or if it's MCAD combined with my Lyme. Perhaps, MCAD is just my underlying problem.

I need a Dr. close to Maryland to get the diagnosis and if someone has articles on what I'm describing symptom wise related to MCAD, could you give me some links to read up on ?

Thank you everyone in advance,

Justin

[juliegee]

Hi Justin-

Sorry thing are so bad now. I think we've "chatted" about this before. Anxiety is a BIG symptom of MCAD. Many, many, many of of the folks Dxed with MCAD & mastocytosis have been dismissed from ER's when they present with anaphylaxis- being told it is a simple "panic attack". Folks with misbehaving mast cells may not have a classic anaphylaxis presentation, i.e. they may not be broken out in hives; but they still have the CNS indicators. I have coined a term called "chronic low-grade anaphylaxis." I swear I spent a whole year in that state . My H-1 wasn't strong enough to suppress my mast cell degranulation & I regularly had a tight throat, tight chest, difficulty breathing, fast HR, low BP, and an impending sense of doom or ANXIETY. Once I got on the correct med regimen, all of those symptoms went away for me. I recently ran an experiment & didn't take my meds for 3 days, all of my MCAD symptoms were back with a vengeance. I had forgotten what the anxiety felt like What a blessing that I knew how to make them all go away!

The chronic Lyme DX is tough to make correctly. I hope you are seeing a good doc, who regularly treats chronic Lyme patients. I have heard of a herxheimer reaction during Lyme treartment : http://en.wikipedia.org/wiki/Herxheimer_reaction If you do indeed have highly reactive mast cells, I can see how this would exacerbate them. The fact that you have such a good reaction to benadryl is very telling. I would highly recommend joining a mast cell disorders forum. This is a link to a good one that also has doctor recommendations for your area:

http://mastcelldisorders.lefora.com/

Until you can get an appt,. I would recommend a daily AM H-1 (10mg zyretc), H-2 (150mg ranitidine or zantac), and a stronger H-1 at night like benadryl. Take this consistently to prevent attacks. These are all OTC meds, and generally very well tolerated.

Better days are ahead, Justin. If you really have chronic Lyme causing your autonomic symptoms, you are addressing that. Perhaps MCAD is also exacerbating everything for you. best of luck untangling it all-

Julie

[Sarah4444]

Hi Justin - The Mastocytosis Society of Canada has a great website with lots of info, and I think it's free to look at. I think I also have the chronic anaphalaxis that Julie describes and that you might be experiencing, and it is terrifying.

[LindaJoy]

Hi. I have a question.

Can chronic anaphylaxis show itself every time you eat? With MCAD, could chronic anaphylaxis, due to lack of MCAD treatment, be the reason for reactions after eating?

And, could those reactions be odd, such as muscle stiffness to the point you are in severe pain all over, head tension and pressure to the point your ears inside hurt, sweating, shaking, coldness, feeling like you're going to pass out or have a seizure?

Thanks.

[blueskies]

Hi Justin,

Just a heads up on taking a xanax and drinking coffee together. I read somewhere-- ages ago - that caffeinated coffee can decrease the effectiveness of xanax. I take xanax and I also drink one coffee a day. But I always leave about 2 hours between drinking the coffee and taking the xanax. Otherwise the Xanax doesn't work as well for me.

BTW, from reading I've done, anyone taking cortisone and xanax could have the same response.

blue

[Miriam Poorman-Knox]

I have Mastocytosis and take enough antihystamines to put down a cow. But it works. I had problems with restless legs and the whole body "scratch/shake" My body goes into a panic. And each time that I take my itchy and scratchy medicine it helps. That is what I think should foremost. That Step 1. you know to take antihistomine. This I think helped to thwart worse autonomic storms !!! good luck Miriam