Dealing with My Symptoms...

Hi, I don't recall coming across this issue, so I thought I'd bring it up.

short background:

I'm about 15 yrs with misdx L/co (the bart is way worse than all else), dx for 14 months, off/on natural/abx treatments, and now off all abx, and treating with supplements/diet/detox, etc.

As many of us know first hand, things can get pretty bad in so many different, overlapping ways, and for me, this stuff comes and goes like an ocean wave. Sometimes the waters are gentle, and sometimes the waters are all consuming.

I've been seeing a lot of different dr's lately. Most for breakdowns in my body: knees, heart, back, neck. It's been a challenge seeing all of these different dr's, and for the most part, I've gone into the appts with high hopes, only to realize that I wasn't being seen/heard/understood/pushed through the system. Some dr's have been/are amazing, like my neuro dr. Hits the nail on the head every time.

My issue/concern is the Bart and how it presents when I'm out with medical personnel. I've heard myself saying things about 'if it wasnt' for my grown children and I wouldn't be here. I'd just be done with all of this." I know they are putting all of this into my medical records. I'm horrified! The stuff that is being kept and shared on our health care info is beyond comprehension, and I wonder if all of this will one day come back and bite me in the rear.

I said to one dr, a bone guy who is taking care of my knee issues, he comes in and I say to him,"Most of the dr's I've seen over the years are a(#$&(*&."

WHAT!??? Now, I know this is the Bart/Lyme, the part of my brain that isn't keeping tabs on the thoughts, and the ability to stop before it shoots out of my mouth is at times, non existent. I understand that, but come on. Do you know how many times I've apologized, explaining what is going on and why? But, it's like this is so foreign to EVERYONE almost, I know they are thinking not such nice things aabout me. It's been nothing less than humiliating and painful, for all involved.

Anyone else?

I'm trying to deal with so many things that rear their ugly heads. It's exhausting on top of everything else to deal with. But, I won't give up and I am learning how to assess where/when/why/how I have meltdowns, and doing what I can to offset things.

Like at dr's appts. I had three this week alone! At one I went in, and they said they are running late, I explained I get 'all keyed up from the machines/lights/noise/electrical/etc'. and 'waiting that long will get me in a panic' so I'll then need to go outside and cry in my car for 30 min before I can leave. I told them I must wait in my car. The woman looked at me, but said, 'what's ur number so I can call you.' I thanked her, told her I understand this is against policy, but so appreciate her help. I did quite well with that appt. It might not always work but I'll try and keep trying.

It's such trial and error. I have to go back to the knee dr on dec 1, and will give him a hand written apology for being crass and rude. I want to be an advocate for what is happening to so many of us, I want to be authentic and upfront, explaining as I learn and grow and beat this challenge I am facing. I want to be a case study for everyone who meets me to walk away and THINK about this, our reality. I am humbled every day by this illness. And, I realize it's no longer me, but US. Every day, every step.

I am not who I was, but I am BETTER than I had ever hoped to be, learning and being the ME I am TODAY.

Boots, hat, raincoat on, waiting by the shoreline..... so far, sun is shining. ;)

Peace and Courage to ALL

I've had my share of run-ins, mostly before I found my LLMD. I went nearly 2 years trying to find treatment, and ended up worsening my condition with steroids a couple times. 3 or 4 times during

flare-ups I was able to get courses of antibiotics prescribed, but all were short courses, so they just knocked off what they could during that reproductive cycle, which was most likely at the end before I

acquired the ABX. Then I didn't have a long enough course to hit on the next reproductive cycle. Most docs down here in Florida, even the Infectious Disease Specialists I was referred to, say that Lyme

doesn't exist in Florida. I got into an argument with a couple ER docs one time, the one sent in to finish the argument was really tough. He said "Just because you test positive for Lyme, doesn't mean

you have Lyme. I could test positive for tuberculosis, that doesn't mean I have an active infection." This is partially true, in that both can lay dormant for years without affecting someone at times, which

is what us Lymees are shooting for in a remission, but I had my big old bull's eye rash back, my symptoms were worsening times ten, and I obviously was experiencing a reproductive cycle. I told

him that he took a hypocratic oath, and he said he would be getting the nurse to run my discharge paperwork. I understand that their hands are tied now, but at the time I didn't care, I felt like death.

I just signed up to be a member of the Florida Lyme League, which is all Florida Lyme patients, and there's about 500 members, so I know its getting bad here. My LLMD says 1 out of 6 ticks here carries Lyme and co's.

Most times you don't have to sign the medical release if you don't want to, and then the dr. you're at only has your word to go off of. Sometimes this is better anyway. Best wishes to you. God bless.

Breaking free I do stuff like that all the time. It's very embarrassing.... I cringe at the thought of some of the things I've said and done. It's taught me the huge difference between shame and guilt!

I hope as your treatment progresses this gets better for you. I try to keep the thought right on the tip of my brain that the bugs are what are making me feel weird. I have to remind myself all the time that it isn't really me, those feelings aren't really mine, and I don't need to hold onto them. I try to let everything flow right through me. Sometimes I won't actually say something out loud unless I've thought about it really hard first. It's exhausting!

Maybe a mantra would help you. Start repeating something like "it's the bugs making me feel weird it's not really me" . I also try to look at myself in the mirror and say "i love you unconditionally right now". It sounds so dumb, but after I actually tried it i could appreciate it's worth.

Hang in there and keep coming here. Awareness is key!