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Just released from er.....

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Posted 7/10/2015 5:55 AM (GMT 0)
Well...... Tonight I was rushed to the ER. My mom and boyfriend called an ambulance for me because my blood pressure got up to 200/110 and my hr was 165. I was shaking uncontrollably and also had chest pains. Needless to say, I was seconds away from fainting when the ambulance pulled up. From the ambulance ride, to the er staff (especially the er doctor) everyone was so loving and helpful and extremely accepting of Lyme disease. This was a complete one eighty compared to my last visit. The er doctor and I had an at least 20 minute convo about chronic Lyme and treatments and he told me not to give up hope. Long story short I was surprised that the staff on this rotation were so open to Lyme. But, after a few beta blockers/anxiety meds my hr finally went down to the normal 90-110 tachycardia. Ugh I'm so sick of this heart issue. Treatments not working. I'm frustrated.

I need help! Otherwise my next stop is the morgue. 😩😩😩😢😢😢😱😱😱😱
Posted 7/10/2015 10:07 AM (GMT 0)
Sorry to hear about your ER visit - not good at all. I am glad to hear the staff were sympathetic an a lttle versed in Lyme though.

I have no sound advice to give you, but I hope someone else does and that you feel better soon.

Hang in there!
Posted 7/10/2015 1:23 PM (GMT 0)
Aly, that sounds like a herx? Can you remind us what you're taking?

Are you still having C-Diff/Stomach issues?
Posted 7/10/2015 1:54 PM (GMT 0)
We are all here with you Aly! I am so sorry to hear that this happened to you. Did you let your doctor's know? If so, what do they say?

Could be a herx.

(((hugs)))
Posted 7/10/2015 3:42 PM (GMT 0)
Thanks everyone. Sorry for always being so negative on this forum. But nothing is going right or even in the right direction..

Previous to the episode I was on:
- cefdinir 300mg bid
- nystatin 500,000 units bid
- vitamin b complex
- adren-all support supplements
- banderol (was up to 9 drops)

The only thing I changed in my protocol was the cefdinir. I stopped that due to gi issues and my LLMD prescribed me augmentin 875mg bid. I barely got a few doses in before I was in extreme chest pain. Then the hr and bp from yesterday was so scary high. I couldn't believe I walked into the ambulance (I'm stubborn). I'm doing so horribly I've miss 3 days of work this week. I agued with my doctors this am about treating coinfections first and I'm just really frustrated. Nothing is working. I'm getting worse. Just feel like giving up. I have an idea of a protocol I want to suggest to my LLND, is that out of line as a patient?
Posted 7/10/2015 3:46 PM (GMT 0)
I'm so very sorry, Aly. I know that had to be super scary. I've been one of those that have never had to go through that, fortunately.

What did your doc have to say about this? What was their reasoning for this to have happened? As others have said, with only 2 doses in, it's likely either a herx or allergic reaction that set this off.

Did you have any other symptoms at all spike up as well?
Posted 7/10/2015 5:12 PM (GMT 0)
"I stopped that due to gi issues and my LLMD prescribed me augmentin 875mg bid. "

Are the GI issues continuing or is it OK now?
Posted 7/10/2015 5:27 PM (GMT 0)
Er doc didn't have a reason except for Lyme complications. I called my LLND and there's nothing she can do for me since my other LLMD prescribed my meds and I'm technically under his care, I Have to go through him. Well my LLMD told me I need to see my cardiologist and I may have pre existing heart issues... I'm sorry what?! I had a full work up and my issues were around because of Lyme. Pre existing heart issues my ass.. Tell that to my younger self that was an award winning soccer player, volleyball player, competitive dancer.. No I'm frustrated.

I think I'm done with my LLMD. He wants me off all meds this weekend and only on a beta blocker.. Um I don't think so. My anti anxiety meds do the trick. I'm continuing care fully with my LLND and new lyme friendly pcp (who is in my state yes!!!) for now.

Sorry to be that type of patient but this is my health and my life. I want to treat the way I feel comfortable and is the most effective. Am I wrong for that. This is the 2nd time I've almost died.
Posted 7/10/2015 5:28 PM (GMT 0)
Gi issues continued
Posted 7/10/2015 5:30 PM (GMT 0)
Also my LLMD refused to acknowledge any co infections for me. Flat out told me no. Only Lyme. Ummmmmmmm, next!!!!

Spoke with my cardiologist. He's sending me to an electrophysiologist for better analysis of my ticker!
Posted 7/10/2015 5:42 PM (GMT 0)
Can the board help you find another LLMD?
Posted 7/10/2015 5:45 PM (GMT 0)
If you have continuing GI issues you need to be tested for C-Diff. Any doctor can do that
Posted 7/10/2015 5:48 PM (GMT 0)
Jrpsf I have another LLND - just have to wait til the 23rd to see her. I liked her a lot! & I have a meeting with a Lyme friend pcp in Chicago which is great cuz she's like 30 min away and she just became ilads trained
Posted 7/10/2015 8:08 PM (GMT 0)
Aly, you are doing great. Getting your doctors figured out is huge!

I hope you are feeling better.
Posted 7/10/2015 8:32 PM (GMT 0)
Sounds like you are doing the right things, honestly, Aly.

I would ask a favor of you though, when you are up to it. Would you email me and let me know what doctors you are having difficulties with? I surely don't want to send more people to them if they will get treated the same way!!!

Also, if it's okay with your other doc's - I'd like to have their names to refer people to as well. They would get the same protections as the others on my list, but I will be able to send them more patients.

You're so right - we have to be our own health advocates!!! The doc's are only going on their opinion of what's going on - they can be wrong!!! and we are the only ones that have to live with any of their mistakes/blind spots.
Posted 7/10/2015 8:40 PM (GMT 0)
Trav you got it! As soon as my lazy butt gets up I will shoot you and email lol. Meds are still kicking my butt from last night
Posted 7/10/2015 10:39 PM (GMT 0)
No problem, Aly. Take your time, I really do understand and I soooo appreciate your willingness to help others like this!!

Thank you!!! <3

I hope you feel better soon. Remember to detox like a mad woman! smilewinkgrin
Posted 7/11/2015 3:05 AM (GMT 0)
darn that sounds really scary. I suspect I have a co-infection that causes chest pain and shortness of breath/air hunger. I had to call 911 once because I couldn't breath after walking up a hill.

Do your symptoms get worse from exercise or exertion?
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