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Posted 3/29/2017 8:53 PM (GMT 0)
I'm still having major air hunger and weird chest pain/sensations. But according to the doctor, THERE'S NOTHING WRONG! 5 hours, over $500, an inhaler and a prescription for Xanax later, we still have no answers. I have an answer. It's called lyme. The only disease in the world that makes you look like a blazing idiot to any medical professional. It makes you feel like you're dying, and then when you go to look for the cause, there is no evidence. I think the prescription for xanax was the most insulting part. They think it's all in my head. Oh, it's just anxiety. Yea, wouldn't you be anxious if you felt like you were suffocating?! They did an EKG, chest x-ray, and CT scan of my heart and lungs. All clear. They still want to do an echo, but it will be clear too. My heart isn't the problem hopefully. It's just the bugs. We don't have an official babesia diagnosis, but after all of this, I think that's sure to follow.

I'm just tired of being a medical mystery. And I'm tired of people looking at me like I'm crazy. Even coworkers who hear about all of your crazy tests, and then see that nothing is wrong...that just continues the "you're faking" stigma. Surely I'm not alone in my frustrations. Sorry for ranting. Just needed someone to listen.
Posted 3/29/2017 9:02 PM (GMT 0)
I'm sorry and we can all relate. It doesn't matter what they think. But this is the very reason why I quit being open and talkative about my issues.

That's why this wonderful forum is here. You can complain to us because we understand 😊
Posted 3/29/2017 9:06 PM (GMT 0)
It sucks, and it's maddening, and i'm being treated for Babesia but my chest still feels awful, mostly in the morning, I feel like i'm drowning.
The GOOD thing that can come out of those tests is that you might rest a little easier knowing there is no detected physical damage. Sometimes I fear Lyme and Co will do permanent damage and give me a heart attack. But those negative tests, though they feel like a waste, helps me breathe a little easier (so to speak) knowing it hasn't damaged anything.

except maybe my mind. sometimes i swear there's no hope for that.

*twitch twitch*
Posted 3/29/2017 9:06 PM (GMT 0)
MA10 - how long have you been searching for an answer?

Have you not seen a LLMD yet for an evaluation ?
Posted 3/29/2017 9:11 PM (GMT 0)
Yep, at least most of us can really relate!

And I was going to ask the same thing as Girlie - do you not have a LLMD at this point? Are you looking for one?


LOL! Babsbunny!!! Twitch twitch!!! Now we need a little emoji guy that twitches!!!!
Posted 3/29/2017 9:30 PM (GMT 0)
Girlie and Traveler,
My LLMD was the one who sent me for further testing. He was concerned because of the symptoms I was having, but instead of just saying that it's probably babesia and to start treating it, he decided we needed to be safe rather than sorry. And I'm thankful for that. Just frustrated.

babsbunny, maybe you're right. Maybe just having peace of mind will help the anxiety about it. Even if it doesn't help the breathing.

Thanks purrrssiankitty! We're all in this together. smile
Posted 3/29/2017 9:35 PM (GMT 0)
Well, that's good to know! And, I think your LLMD was right to make sure that nothing else was going on - but DANG!!! I so wish that they wouldn't send us to doctors that put us through all that baloney!!!

I would agree, see it as a peace of mind thing that it really IS Babesia and not something else. Naming our monsters sure helps me to deal with them!
Posted 3/29/2017 9:44 PM (GMT 0)
I kind of just want to cry, Traveler. Baloney is right. A very stressful day and somewhat traumatic. I wish there was an easier way to do testing without scaring me half to death telling me that I have a lung blood clot! lol. He'll get an ear full when I see him soon. Let me tell him that they "put me on" xanax. He'll flip a lid. haha. I wish all of my monsters were named. Then I'd know what monster-killer to try. turn
Posted 3/29/2017 9:49 PM (GMT 0)
1000 Daisies, I have a hospitalization story like that too! Every time I drive by the hospital once a week I still get the hibby jibbies. Maybe after my echo with this doctor on the 11, maybe he'll be one of those that admits that he doesn't know. But for now, he's on my bad list. lol. Surely he meant well. He's been one to work with my LLMD in the past. Maybe he just was pulling straws trying to help in anyway he could. I'll choose to believe the best about him for now. wink
Posted 3/29/2017 9:59 PM (GMT 0)
I have a feeling that it's best not to get into those hospital stories! I had one try to kill my last husband - seriously! They gave him a meal when on his door it was clearly marked 'nothing by mouth'! And, that's why my current husband will never stay in a hospital alone!

I hope that the other doc was just trying to do whatever he could think of to help!
Posted 3/30/2017 12:46 AM (GMT 0)
MA10
I'm so sorry you had a bad day with the doctor. I too, can relate. I just joined this group, but the support is amazing.

We're all in it together.
Xoxo
Posted 3/30/2017 12:58 AM (GMT 0)
one thing lyme can teach us is to de-sensitize us to people (especially so called medical professionals) to their incorrect assertions.

when i first got diagnosed i spent the first 6-12 months telling everyone about it as it was interesting to me and i thought others would find the info useful since i live in a very endemic area for it. alas no in the end no one gives two @#@& about it and isn't really interested in hearing about it. for those that have a bigger heart after a while they get sympathy fatigue and drop out as well.

nope these days someone asks me how are you feeling i say getting there and that's it. i'm done with trying to educate people who have no context in which to even understand what i'm going through. it's like trying to explain to a 2-dimensional being what 3-dimensional object looks like.
Posted 3/30/2017 1:00 AM (GMT 0)
Wow! I've never gotten a benzos prescription, you lucky dog.

Probably for the best, though.

Yeah, you've sung a common tune, sadly.

You'll find the help you need, someday. Keep fighting.

~<3
Posted 3/30/2017 12:38 PM (GMT 0)
Ooo, stupid doc stories?? I was briefly diagnosed (by an idiotic ID doc) with a measles complication (SSPE). I went home and asked my mum's friend, who is a GP, who looked aghast... and then puzzled... and then explained it was fatal.....but then reassured me that it was OK because if I had it I would have been dead already.

I didn't go back for the follow up appointment just in case they thought I hadn't followed the diagnosis through and wanted to help me out.....yikes!!

Hang in there MA10 and don't let the muppets get you down!!
Posted 3/30/2017 1:35 PM (GMT 0)
Hi MA10, I'm right there with you. I have told my LLMD that I'm having trouble breathing. He listens to my chest and it's clear. My asthma sometimes pops up but it's nothing like feeling like your drowning. I'm not a doctor, but if I complain about not being able to breath, like I'm drowninga and my lungs are clear, doesn't it seem logical that it might be related to Babesia?

I also have horrible muscle pain. The strength is the same in both arms so he suggestion was that I go to a neurologist. Like that will be helpful. I went to a neurologist when my perpherial neuropathy was at a level 12 all the time. All I got was a howdy do and and $600 bill. He also said he wanted to see me in 6 months to see how I was doing. I told him I would send him a card.

There are so many things that I read about as common symptoms of Lyme and coinfrections and he acts like he never heard of it before. He's been practicing this for 30 years. I'm so fed up.

I'm so sorry you have to go thru this. This disese just sucks and theres no other way to put it. Not to make light of your horrible treatment, it makes me feel a bit better knowing that many docs are like that and I can't take it personally. Which is a weird thing to say because it's very personal for me.

Best of luck, I would love to hear if you find a solution to your breathing problem. Until then, many hugs being sent your way.
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