another close call and hospital trip :(

I was doing very well. And then i wasnt. On Monday I woke up with a bad drug reaction AGAIN. my entire body was covered in what I'd liken to chemical burns. Very swollen to the point it was lowering my oxygen. I should've went to the hospital right away, but of course stubborn me I waited and waited.

My fiance finally had enough by the time the sun went down and I was doing worse and threw me.in the car and away we went. They took me back right away. I looked like a monster. My heart rate was high very low blood pressure low oxygen. I was in a ton of lain as every inch of my body was literally burning and blistering.

That was monday. Today I'm doing better. I've been put on high dose steroids and iv benadryl and a couple other antihistamines. I hated it when my llnd called and said I needed steroids. I have to weigh the risks and benefits and it's not worth dying over to not take them. He is doing his best to keep me on what he can in the meantime so I don't backside too much. This is going to set me back obviously.

I was doing so well :( I can't believe this is happening again.. I've been in shock all week and kind of froze up. I'm hesitant to take any herbs or anything else for fear it will make my reaction worse.

So every single attempt to treat since April has ended in failure and it's worse every single time. I start doing well with a new medication and then within 2-4 weeks my body says no more. I'm confused. I just don't understand mechanically what is happening in my body to instigate such severe reactions. And so out of the blue. I'll literally feel great almost like a normal person and then BAM! no more!

I'm not in a very good place as I write this. Sorry. I still have treatment options. But the list is getting low. I'm terrified and don't feel like treating anymore. I don't want to be sick either. I don't do very well off treatment or on it apparently. So disheartening..

For now I'm just in a rotten mood probably due to the mood swings from steroids. Sorry to be so brash :( I'm exhausted, worried, sore, confused, and grasping at straws to uplift myself and restore hope.

So sorry to hear IHL!

If it happens after 2-4 weeks - what about stopping at 2 weeks, for a week, and then starting again for 2 weeks.? Maybe a pulse approach would work?

Stop before it hits? I know it may be hard to determine exactly when that would happen...but maybe between you and your Dr. you can figure it out. Maybe one week on, one week off?

Sorry about this :( have hope, I know it's hard with this roller coaster ride you've been on. I'm sure there is something out there that is the right fit for you. Positive thoughts and healing vibes to you.

Sorry to hear you had such a scary experience, IHL and I hope that you are doing 'OK'.

Could it be something genetic? I ask this because my sister (who doesn't have lyme) has the same symptoms you describe and has had to be rushed to the ER on more than one occasion. The docs couldn't fathom what brings it on or what the trigger was, there never seemed to be a rational explanation for it.

They finally discovered she has some enzyme missing (I don't really know the ins and outs of it) so suddenly meds that she has been taking without any problem (like her asthma meds) can suddenly trigger this response. She'll change up her meds, be fine for a while and them, like you say, BAM!

Sometimes she suspects its an environmental trigger, like someones perfume for example.

She has an epi pen and is otherwise fit and healthy but since your body is so compromised to begin with perhaps something like this could be responsible?

Or maybe I am talking outta my bottom ;)

Seriously, I hope that you get to the bottom of it, maybe like Girlie suggests, a pulsing regime may be the route?

I really, really hope you start to feel better.

Oh hell, yes Traveler , I had completely forgotten about that, sorry IHL!!

I shall pass that on to her, thank you: )

So sorry IHL. That sounds horrible. I see some good advice here though, maybe it can help. THINKING OF YOU... ~ Ali

IHL~That you have moments of "light" amidst, does give some hope that healing can happen---tho I'm sure right now with all you are going through (& have been thru!), it seems far away.

I'm so sry for all your pain. No one should have to endure this & you have an amazing fighting spirit & it is admirable that you are chronicling this, for yourself & others.

I agree with Trav that I think we will see more & more re mast cell in combo with all this MSIDs ka-ka. Like the chicken/egg argument, it makes me wonder if the gene isn't mutated due the disease (as opposed to the other way around).

But it doesn't mean you can't conquer this. Keep fighting.

This article below seems to support acupuncture in helping mast cell:
http://www.ijbs.com/v10p0511.htm

Hugggggssss!

IHL has had another set back, but I'm sure she will update this thread as soon as she can.

I've unfortunately taken a turn for the worst and may need to go back to the hospital :( I can't seem to catch a break..

I'm so sorry you keep hitting road blocks IHL! I agree that you're very, very tough.

Hang in there. You can do this. You're a fighter!!!

We're all rooting for you!!! I will keep you in my prayers. ❤️

IHL~Wondering how you are doing?

Hey guys!

Apparently antibiotics and herbs really mess with MCAD. I finished my steroids. My skin has improved although I likely still have at least another week of healing to do.

There's no way around coming into contact with triggers if I want to beat lyme/co. It's a balancing act. I probably will need to stay on high dose benadryl for the duration of treatment. Which sucks as the major dude effect it seems to invoke in me is depression.. Hopefully my MCAD is a 'symptom' of lyme and improves as I get further along in the killing spree.

I'm exhausted. And sore. And a little beat down. I'm trying to keep a good attitude and manifest positivity. I'm trying to be kind to myself and practice self care. So. Ya. I'm hanging tough- doing the best I can to make it through the days and be thankful to be here. I'm alive and unwell and trying to make peace with the notion that the only constant is change. I won't feel like this forever.

My little boy is my savior :) I get out of bed and slap a smile on my face even if it's fake. I draw all my strength from the love and support of my family. Without the constant barrage of near death experiences this past year I never would've got to see this side of my family. Their strength and bravery is.... wow. Just wow. They've stuck by me and cheer me on through every trial I've faced. I owe it to them to beat this thing and take my life back!

I hope you're all doing well and I apologize for the lack of communication. Traveler keeps a close and loving eye on me so she can always fill you in! And just to put her in the Lyme light (see what I did there?) I don't think that there is a more invested person in the world for those that are suffering. Traveler has helped me research, remember things, and has basically been my brain through some really dark times this past year. I'm extremely gracious for her presence in the lyme community. We have a good warrior on our side!!!

Okay, IHL, enough of that!
Thank you for your kind words, but I'm not special - well not in that way!! I've always been a "special" case though!!

You are a fighter and a spunky little thing, and without the strength that you find within yourself, this would be a whole different battle.

You'll make it through this because you too have a lot left to do in this life and you know it.