Thursday, September 2, 2010

Plug me in baby!

I have a few things to mention on this post. My brain is a bit frazzled again today so sorry if this is incoherent.

Firstly, I am having some heart related tests done to gain some more insight into my POTS issue so we can work out the best way to try and treat it. Last week I did a 24 hour holter test. This is where they attach electrode type things all over you which read heart rate and blood pressure over a 24 hour period. The point of this is to see how high and low my readings are within a day. There is no point prescribing mediation to raise my blood pressure if in fact it is already high at certain times of day so it’s important to get this info. It may sound like I am being overly cautious but I have already had one really bad medication experience using beta blockers to try and help the POTS. Next week I am going for an echocardiogram just to make sure there is nothing else going on which could be an influence. When I saw the POTS specialist for my initial consultation he said it sounded like I had a mitral heart valve defect, so it will be good to know for sure.

Secondly, I am advancing in my trial of antibiotics. I have been on them a few weeks and I do believe there is positive change occurring. I seem to have a couple days where I feel really good by my standards and then a couple of days of the flu like stuff, so this would suggest a herxing of bacteria. Two days ago I started taking Nystatin which is an antifungal medication. If you are taking antibiotics long term it’s a good idea to also take the antifungal because the antibiotics kill all the bacteria in your gut and without thriving good bacteria candida/yeast will flourish and that’s a bad thing. Of course I am also taking a good probiotic to help replenish the good bacteria.

Regarding candida I do think I probably had a problem with this anyway which needed addressing. There is a good questionnaire on Dr Greg Emersons site which will help you work out if you have this problem. He also has other useful questionnaires too. There is also a article explaining just what candida can do to you if you have CFS or FM, check that out here, it’s well worth a read.

Lastly I have another link to share if you are interested in probiotics. Melinda on facebook passed this onto me. Here and more here.


  1. Thanks for all the info Lee Lee, and good luck with the latest testing. Big huggeroo ((()))

  2. Hi LeeLee, thanks for the updates. So it seems you're not sure yet if the antibiotics are really helping?

    I've heard about the holter monitor, I'm really curious to see what it shows. I've never been diagnoses officially with OI, but I'm sure i have it (it comes and goes)

  3. Hey Lee Lee...... Sounds like you are a busy bee in terms of trying to fix things. Well done you x

    I've taken nystatin a few times now as I suffer from yeast problems in my bowels. I have found it good, but its so true if you don't stick to the no sugar thing that it comes back, unfortunately...

    Thanks for all the info! I hope you continue to see progress with the antibiotics, and that something positive comes from all the heart testing.

    Great to hear that you are being listened to!

    : )

  4. Sending you healing wishes, Lee Lee. You are a fighter. Your blog is so creative! I'm taking notes about taking antifungal with antibiotics in case it turns out I have Lyme...


  5. Sounds like lots of good developments for you! I've never had any tests for OI - Dr. Bell (a CFS expert) tested my son, then told me I had OI, too, based on my symptoms, and if he tested me, I'd end up too sick to get the two of us back home (we had to fly and drive). The testing sounds worthwhile - let us know what they find out.

    Glad to hear the abx are helping, too...and that you're taking some good probiotics, too.

    Hopefully, all of this will lead to improvements!


  6. First, I don't think you can EVER be overly cautious so, I am thrilled that you are having all of this testing done.

    The candida is interesting to me, and I do plan to check it out further (once I can be online a bit longer) and I'm thrilled you are having some good days.

    Sounds like your in good hands with the POTS specialist, and I'm hoping they can find something to help that at least.