Update-- MCAD is the devil and Lyme is a huge jerk

Soooooo.... I'm feeling good enough to write! That's pretty cool!

I had my appointment recently and it went pretty well. My doctor obviously wants to treat my mast cell. I've tried every combination with no relief except one route. Benzos and steroids. I've avoided these two options since last april. But it's time to stop being resistant to the idea that I might not heal without them. Benzos are mast cell stabilizers and steroids will keep my airways open since they keep closing up and trying to kill me.

I never thought I'd find myself here. Lol. I can't think my way to health- apparently I missed the memo on that one. I think my family might have missed that one too.

So I have an entire pharmacy of meds to take multiple times a day to combat my mast cells being drama queens. And as for Lyme my treatment is pretty minimal. I'm still doing iv abx just low doses. Mast cells hate abx unfortunately.

Anyway....... I'm feeling more hopeful. I spent the last few weeks trying to hide from myself. Let me tell ya- that's an unfortunate impossibility lol. I've been angry. Probably from the massive build up of histamine and bugs in my brain. Did you know schizophrenics have high histamine? Ya. I've been feeling pretty crazy. If I wasn't angry I was being really negative and sad. And then there was the crippling anxiety. Everything felt foreign to me. I just couldn't get comfortable and nothing made me feel better.

So going from completely helpless and scared to this new found..... I don't know. Sense of relief? Whatever I can't think of the right words but I'm feeling better simply put. So. Ya. I'm still trying. I haven't given up. Well maybe I did give up and now I'm back on my feet feeling refreshed and ready to fight again.

One thing I've learned this past year is the difference between 'fighting' and trying to go against the grain. I don't know if that will make sense to you. But for me.I've had to learn to go with the flow and be OK with going in a direction that I didn't necessarily choose. I don't have control over this and surrendering and fighting can be sort of the same thing in some situations. That's where I'm at.

Don't forget to smile! And be weird! Lol, when all else fails just be weird right?! OK now I made myself sound super crazy lol.

IHL, I was so sorry to hear that you had MCAD. It's horrible. I have not been diagnosed but I did look into it because one of my major symptoms has been allergic reactions to everything. Severe reactions with the only solution being prednisone.

I know that you said the only treatment is benzos and steroids. Just wondered if they had tried you on Ketotifen? I know the oral form is not available here through a regular pharmacy. But it is legal to get it through a compounding pharmacy. It has been available in Europe for years and it is available in the US as eye drops.

Hope you have a good day,
Kim

Though I'm sure you'll understand where I'm coming from, I just want to say that I mean no offense in saying this, but a lot of what you are, or were, dealing with reads like a horror story to me, IHL.

I mean, of course, all of our stories can be pretty scary, so I'm not exactly trying to single you out or discredit anyone else's suffering.

It's just I really worry about developing some similar issues myself, with my relatively newfound issues with food, chemical, histamine intolerance (within the past 6 months), along with the Lyme/co and whatever else I've got going on. Oh, and throw an MTHFR defect in there too.

I know these sorts of things can put a lot of stress on the mast cells.

I know some of those feelings.

I've been giving up a little myself, not putting the effort into it that I should. I know, it's of no real use, nothing good will come, but I just feel like nothing good's coming of my trying either. I have dozens of bottles of pills, powders, and tinctures, no use. I was eating as healthy as I could, though to the point of starving to avoid problematic foods, yet still reacting. I just gave up.

Days come, when you think, it's all too much as it is. Then, more problems come into the picture, and it's like.. well, now my life really sucks.

But, yeah.. gotta keep trying, I guess. Though, me, I'm at the point where I'm just kind of shrugging my shoulders at the thought of, like, "what am I gonna do?" What can I do? There's just so many things to address. I don't know where to begin, how to begin.

Have to try though, right? Thanks for this. Sorry for the pain.

Better tomorrows for us all, I hope.

Not quite antonio---- my life is a horror story lol. I take no offense. It's been one disruptive life threatening episode after the next. That takes a toll on someone after a while. Especially someone with a 3 year old son that still very much needs to be taken care of.

You'll get there antonio. It's not easy and it takes forever. You have to respect yourself enough to do what's right for YOU. I've had to learn how to do something I never did before- love myself. If I didn't love myself I probably wouldn't be alive right now. And when I don't love myself I love my son. I'm lucky enough to have this little monster as a constant reminder of what I'm fighting for.

If you think you have mcad start taking antihistamines and see if you feel better. A lot of stuff is over the counter like Zantac and zyrtec. Join the groups on Facebook and take everything with a grain of salt. Feel free to ask me any questions you can think of. There's no such thing as a stupid question, seriously.

This stuff is confusing and I don't even get it half the time. I'm lucky I have a doctor that branched out and was willing to learn about it to better care for me. I know not all doctors are willing to do that. He somehow found the time to research about mcad and Lyme and came up with what he thought might help all the while being honest and saying "you know, no one really knows what to do for this.".

So. I'm trying too. And the whole food thing just makes me mad. If I'm well enough to actually feel like eating I'll eat whatever I want. I know what things I can't eat like tomatoes and citrus and just do the best I can everyday. I got a meal replacement powder and basically live off that most of the time.

It all comes back to treating the source of the problem, Lyme. And we all know that takes forever. So do what you can for your symptoms while you quite literally fight for your life. Take pain pills if you hurt. Take nausea medicine if you're puking. Take benadryl if you have allergies. Take anxiety medication if you aren't comfortable in your skin. Eat donuts if it looks good. Be kind to yourself. You don't have to be serious 100% of the time. As long as you trying you're doing a good job.

Wow and to take care of an active 3 year old. I have to hand you the hero award. I barely take care of me some days.

Lol I barely take care of me too.

Days like today I feel like throwing in the towel. I'm worried about Thanksgiving. Not because I have to cook or anything but because I have to leave my house. It's an Olympic feat to walk to the other side of my house sometimes. This disease is so unpredictable. I never make plans. The holiday season comes with a certain amount of obligation when you have a little kid. And family wants to see you even if you feel like crap.

I wish I could invite people into my body so they could feel what I do. There simply are no words to accurately describe what this feels like. Mentally and physically I'm breaking down. Ugh. I have to bring myself to the brink of death to try and heal. I wonder if this is what people on chemo feel like?

One interesting thing my doctor said-- some mast cell patients have to take a cancer drug called gleevec. It has permanent side effects so it's not the go to treatment. Some mast cell issues are considered a former of cancer. Weird.

No I won't be taking gleevec

IHL:

I am so glad you didn't lose your sense of humor! You are an inspiration to all of us. Keep fighting, you are so strong, you will find something that will punch Lyme and MCAD once and for all!

IHL, it is soooo great to hear from you. Life has chucked you some real curve balls and you are still whacking away at them. Kudos to you!!

Hang on in there! You are a fighter and then some!!!