1. < MAC & Bronchiectasis

Pre-treatment dysautonomia / blood count changes

Posted by sinojosvacios @sinojosvacios, Apr 15, 2024

Hi all. I am currently waiting on initial sputa results to come back to check for suspected MAC. I wanted to see if anyone can relate to any of my symptoms pre-treatment:

-Tachycardia upon waking / after eating / sometimes random
-Feeling cold and hot at same time
-Frequent urination
-Insomnia
-Elevated white blood cells
-Elevated platelets
-Low ferritin
-Elevated calcium
-Low PTH

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

sinojosvacios | @sinojosvacios | Apr 17, 2024
In reply to @bdr "I have disautononia as well- MAC free at the moment after having it and using the..." + (show)
@bdr

I have disautononia as well- MAC free at the moment after having it and using the big antibiotic gubs twice over several years - each time I’ve been MAC free for over a year.

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Did you notice that your Dysautonomia symptoms disappeared during the times that you were MAC free?

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Toni D. | @tcd518 | Apr 17, 2024
In reply to @bdr "I have disautononia as well- MAC free at the moment after having it and using the..." + (show)
@bdr

I have disautononia as well- MAC free at the moment after having it and using the big antibiotic gubs twice over several years - each time I’ve been MAC free for over a year.

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What are "antibiotic gubs"?

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krcaldwell28 | @krcaldwell28 | Apr 3 11:31pm
In reply to @rbl "I was surprised to see dysautonomia on this thread, I too have dysautonomia with postural orthostatic..." + (show)
@rbl

I was surprised to see dysautonomia on this thread, I too have dysautonomia with postural orthostatic tachycardia. The list of symptoms are very familiar to me. My blood work is a bit off with meds but not bad. I never tied all this together. I got my first pacemaker in 2006 for 3rd degree heart block. A nodule was spotted in a CT scan on May 2009 but was never mentioned. It wasn’t until 2/2022 that my cardiologist did a calcium score and saw the Bronchiectasis then shortly after I tested positive for MAC. Sorry for my rambling but I’m curious if there are others with Bronchiectasis/Mac/dysautonomia here? The human body is very interesting…

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I have been dx with dysautonomia / MSA... my symptoms started with Cronic POTS, then came clotting disorder, SVT, VT, AFIB then went to kidneys and AGID and now messing with my lungs, insulin and nervous symptom.. they have decided that sending me back to Mayo is best for them to get my sx back under control.. anyone having MSA? and how do you deal with the constant uncontrolled symptoms? Im tried of all the medications..

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krcaldwell28 | @krcaldwell28 | Apr 3 11:39pm
In reply to @rbl "Other than night sweats, coughing and weight loss I figured the fatigue, temperature intolerance, dizziness, gastro..." + (show)
@rbl

Other than night sweats, coughing and weight loss I figured the fatigue, temperature intolerance, dizziness, gastro issues, extreme thirst and frequent urination were all POTS/dysautonomia.

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they are all symptoms you can have with this disorder and so many more... my calcium score was perfect but I was positive for the clotting factor after being positive for chronic POTS, It trickled down hill from there... I had to have a pacer implant due to it not being controlled ( 9 yrs ago) and am up for battery change/ possible device change in next couple months. seems the older I get, the worse my condition gets.

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1 reply
rbl | @rbl | Apr 4 8:09am
In reply to @krcaldwell28 "they are all symptoms you can have with this disorder and so many more... my calcium..." + (show)
@krcaldwell28

they are all symptoms you can have with this disorder and so many more... my calcium score was perfect but I was positive for the clotting factor after being positive for chronic POTS, It trickled down hill from there... I had to have a pacer implant due to it not being controlled ( 9 yrs ago) and am up for battery change/ possible device change in next couple months. seems the older I get, the worse my condition gets.

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My post was from a year ago and I’m off all meds except for albuterol and sodium nebs, I’m sorry you have so much going on. I’m not sure what kind of pacer you have but I was given a Biotronic pacer in Toledo by my POTS specialist for my first replacement. It was a game changer as far as preventing me from passing out. It senses the b/p drop and kicks the heart rate up. I haven’t heard of MSA but hope Mayo can help you.

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1 reply
krcaldwell28 | @krcaldwell28 | Apr 4 8:51am
In reply to @rbl "My post was from a year ago and I’m off all meds except for albuterol and..." + (show)
@rbl

My post was from a year ago and I’m off all meds except for albuterol and sodium nebs, I’m sorry you have so much going on. I’m not sure what kind of pacer you have but I was given a Biotronic pacer in Toledo by my POTS specialist for my first replacement. It was a game changer as far as preventing me from passing out. It senses the b/p drop and kicks the heart rate up. I haven’t heard of MSA but hope Mayo can help you.

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Hello, glad to hear you are doing well with your treatment. I was given Metronic pacemaker and now they are considering Biotronic pacemaker but are hesitant due to my condition and possible need for more MRI's,,, has MRI's ever been an issue for you with you pacemaker??

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rbl | @rbl | Apr 4 12:59pm

I haven’t had an mri but it is possible to have with it. I’d check with Biotronik. Research Biotronik, they use some algorithm to help when your b/p dives.

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