mast cell disorder

does anyone on here have any knowledge on mast cell disorders and lyme disease? i just learned of these disorders about 1 week ago, and it is possible I have this or both lyme and this. I am having testing done now. many people with the MTHFR gene mutation have problems with their mast cells. J

IHL has this. I haven't read anything about it myself but I know some others on here (Traveler et al) know more. Check out IHL's posts too.

Yep I sure do have this terrible issue. I can try to answer any questions you may have. What's up?

IHL -I know how sick you've been...what are the main symptoms that would suggest a mast cell disorder?
....and have things settled down a bit for you now? (sure hope so...you have been through a lot)

I just had another really bad episode with mast cell after 2 days of diflucan. I guess I have yeast in my intestines. I've taken diflucan before with no issues but it almost killed me this week. My heart was having spasms and I felt I was on the verge of a heart attack. I even had pain shooting down my left arm. I'm still recovering from this.

But that's one of my mast cell symptoms. I'll be OK with something one day and the next it will turn on me. Also I get rashy. I get hives from heat. The worst is this sensation in my jaw and chest that make me very short of breath. My blood pressure will drop as well as my heart rate when I feel short of breath. It's terrifying. It really feels like if I make one wrong move during an episode I could easily die. Not to freak anyone out or anything. But mast cell issues can be very dangerous.

What else.... my bone pain might be from mast cell degranulation. It could also be lyme. It's really hard to tell because of the overlap. I get flushed alot. My hands look like they are 100 and I think it might be acrogeria. Acrogeria is premature aging of the hands most commonly although it can happen to other parts of your body. My hands hurt terribly and are very weak. The symptom list for lyme and MCAD are very similar actually.

Mast cell issues have a connection to ehlers danlos and POTS. I recently read something written by a doctor that said she sees alot of patients with lyme, MCAD, POTS, and EDS (ehlers danlos syndrome). There is a huge question about whether or not I have EDS right now. My hips and my ribs pop out of place often. EDS is a connective tissue disorder. So it's common to have joint dislocation and sublaxation. I've suffered with this for a long time and never thought much of it. With my vascular issues it would also make sense if I had something like EDS.

I go to Portland soon to see a doctor about all of this as my llnd is at a loss of what to really do with me. Every time he tries to get me on something I have huge and very serious reactions. He said I've been in an "urgent care state" since he's known me and something just isn't right. I respect his honesty immensely.

So ya. I've been really sick and no one understands why. In turn no one knows how to help me. It's very frustrating. It was enough to find out I had all these infections, but all of these other diagnosises make treatment very complicated. I often wonder if I'll ever find a way to overcome my illness. But I quickly stomp out those kinds of thoughts. I'm sure I will overcome all of this. It's hard not to feel a little defeated sometimes. But I'm a tough ole bird!