Update & Tips Over The Years 

18 Mar

Cardiologist Update 

The heart doctor said that my two week monitor didn’t catch the passing out episodes of any arrhythmia. The issues happened before and after the monitor was on. So she suggests I get a heart monitor implant that goes under the chest skin for 3 years. She said my heart was very slow at night sleeping and very high during he say when awake. She said my heart skips beats but that is “normal”. The 50mg of Losartan is keeping my tachycardia down to the 130-140/100-90 range so my BP is much better than it has been since I was 13 years old. I was worried that long with tachycardia my heart would be a mess but so far it’s not as bad as assumed. Cardio said I have some “mild leaky valves”. 

Next up is a nuclear stress test. Then a sonogram of the carotid arteries in my neck. And then I choose if I want the heart monitor “surgery” which looks very simple. I think I will do it since my episodes come and go. The episodes I’m talking about are the ones that are not POTS but the longer fainting episodes. With POTS I stand up and pass out, wake up on the floor and go sit back down. With the other episodes I start seeing tunnel vision, hear words backwards, can’t understand anyone, can’t move, I HAVE to lay down even if it’s a dirty bathroom floor and I eventually pass out for a while. The episodes last about 45 minutes. My skin turns paler white to gray, I’ve been told I look “dead” and one lady thought I had passed away calling 911. It’s happened about 5-6 times since last year. Cardio thinks it’s brain or heart related. 

It’s good to keep testing and rule things out. The more I test the more illnesses I’m diagnosed with. Don’t let anyone tell you nothing is wrong if you know your body and know you are suffering. 

 Some Tips I’ve noticed over the years:

  • IV Rocefin (ceftraxione) can cause your gallbladder issues and to have to be removed. Ask your doctor before you use it. 
  • Doxycycline and the sun don’t mix, I still have a scar on my forehead from being in the sun for a few minutes while on Doxy. 
  • Being too aggressive on antibiotics, using too many at once and high doses caused thrush, severe candida and c-diff. It took about 8 months to heal from all and I had to stop all antibiotics. I was on a ton of probiotics and took all precautions before started the aggressive treatment but it didn’t help. I had a flesh eating type of thing that was not only scary but very painful. 

5 Responses to “Update & Tips Over The Years ”

  1. Deb Elder March 18, 2017 at 7:58 pm #

    Have ya considered Bee Venom Therapy?? I’m happy to help teach ya.
    Sadly, it sounds like ya’ve had a very rough time.
    Do what feels right for you. Wishing you all the best.

  2. Aleksu March 19, 2017 at 4:12 pm #

    Regarding your passing out episodes and cardiac issues: I wonder if you’ve tried bringing a water bottle everywhere to be certain you are properly hydrated? I also have Lyme and had similar episodes of passing out, also had “extra heartbeats,” and finally figured out it’s dehydration causing sudden blood pressure drops and syncope. This came after years of mystery, when I passed out while getting a blood draw and the tech said I was dehydrated because my veins were flat and my blood stickier than usual. Now I drag a steel water bottle everywhere both inside and outside the house and make myself drink often (especially before a blood draw), and haven’t had fainting since. The extra heartbeats (PBC and PVC or something like that) went away with IV antibiotic treatment, but the tachycardia and low blood pressure responded better to hydration. Just thought I’d mention it. Good luck to you in your Lyme Journey to wellness.

  3. Aleksu March 19, 2017 at 4:26 pm #

    P.S. The tunnel vision and necessity of lying down immediately, plus change in skin color, and also clamminess if you get that too, is indication of a sudden drop in blood pressure. I was an EMS First Responder, and I also have experienced this exactly as you describe. Also would get dizzy upon standing or sitting up suddenly, and went through months of very low blood pressure. Also experienced the tachycardia and some confusion from dehydration as well. That’s why I mentioned the dehydration as a possible cause, as it was in my case. I get too much estrogen and hence cortisol, which I suspect is behind my dehydration issues, although I also have thyroid and related blood sugar struggles that could also contribute. If you’ve ruled out POTS, maybe try ruling out chronic dehydration (by the time you’re thirsty you’ve already been dehydrated for awhile), blood sugar issues like reactive hypoglycemia, pre-diabetes, thyroid disorders…. Dehydration can also explain tachycardia and confusion too. Anyway, a lot of us Lymies get syncope (fainting) episodes, but there doesn’t seem to be much research on the mechanism for this, so we need to share amongst ourselves what our experiences have turned up! Just a note: soda is a terrible hydrator–it expels liquid from you more quickly so it actually serves to cause dehydration. Took me some time to figure that one out too.

    • 49er Bryan March 20, 2017 at 1:25 am #

      Thank you for the reply Aleksu. I’ve ruled out the dehydration, POTS, Lyme syncope and thyroid issues so far. I have all of those but this is a different type of episode that’s hard to explain. I’ve had seizures before so we are currently seeing another neurologist. With my POTS I pass out when I stand up and try to walk or stand too long. These episodes come on when I’m laying in my reclining chair watching tv or when I attempted to go out to eat one time. I have chronic dehydration genetic issue so i hyper hydrate daily and I take at least two bottles of water if I go to doctors appointments but I don’t leave the house other than that. I did notice my BP was lower than I’ve ever seen it at 98/75 during one episode and my BP is usually average 160/125 (before Losartan). So maybe the low BP is a cause but the cardiologist doesn’t thing it’s related to these episodes. She’s thinking I have some arrhythmia and other issues. Just going to continue to test and have the heart monitor implant, I think that’s best. Hope you are finding better days.

    • 49er Bryan March 20, 2017 at 1:27 am #

      Oh and I cut out soda about 7 years ago and now I only drink water, Kombucha or decaf teas. Sometimes Gatorade but I drink something called E-Lyte which a super concentrated electrolyte water you pour a cap into your water each day. It is very helpful with dehydration and dehydration related fainting. You can find it on amazon.

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