Wednesday, December 18, 2013

Scary scary reaction to Lyme Disease drug.


How is my treatment for Lyme going?  I wish I knew the answer to that question. I was having a few days where there were glimpses of feeling well, but then a week ago I had a set back. I had been on Plaquenil for 2 weeks. Started on a very low dose and was building up to full dose of 400mg a day. Last Wednesday I got to that full dose and when I woke Thursday morning BOOM! I was the sickest I had been in over a year. The most extreme muscle weakness imaginable, massive fatigue, brain fog, headache, all over body ache, heart palpitations and diarrhea, just horrible and very scary to be back in that place. My initial assumption was either I had picked up a new virus or bug, or an old one had re-surfaced. I felt devastated. Even before I had started the Lyme treatment I had made quite significant gains within the last year, and now it was all gone. I emailed my Dr and he suggested i reduce the dose on all medications and I get a stool sample for testing so we can see if it's a new bug.

Three days later and no improvement with any of the symptoms at all. Then I did some googling and discovered that all of these symptoms can occur for some people as a reaction to Plaquenil. DOH! I immediately stopped the drug and the next morning the diarrhea had stopped but other symptoms were still there. I felt terrible but I really needed more info so I posted on Facebook and a few people gave me more clues. It seems Plaquenil is in a class of drugs called Quinlones. These drugs deplete the body of magnesium. Low magnesium causes muscle weakness, fatigue, headache etc. My magnesium levels (and most people who also have a diagnosis of ME or CFS) have always been low anyway and from time to time I take a supplement to help with this. I dont take it all the time because I find that after a while it upsets my stomach. Anyway, so I jumped straight onto supplementing with magnesium and the next day I felt soooo much better. Still weak but no where near as bad. The last couple of days have waxed and waned and google says it can take some time before the muscle recover, and I suspect this is going to be the case.

The other annoyance is that without the Plaquenil some of the symptoms it had helped with have returned big-time. Nausea is bad, pain is bad.

I am thinking once my magnesium levels are up enough and I feel that my muscle strength had returned then it might be worth trying again at a lower dose. The Plaquenil was definitely helping with some things.

This is the risk with treatment. It's scary and while you may get better, you may get worse, a lot worse. But you have to try. The next drug on my list will be Azythromyacin, which is another scary drug. I read last week that people with heart issues are at risk of death within the first 5 days on the drug. Oh joy!!

On a more positive and cheery note, the music project 'Dropkick' that I have been working on with fellow sicko Cusp has been going well. As a special Christmas treat we have recorded a cover version of 80's band Dead or Alive's song You Spin Me Round (like a record), and we are giving it away for FREE. And to make it actually have a purpose (rather than just for fun) our record label are participating a a huge Dutch fundraiser for RED CROSS. So, when you download our song you have the choice to either enter a value of zero if you'd like it for FREE, or if you are feeling charitable then you can enter an amount you like and then that money will be donated to RED CROSS. All the details and links are on our Facebook page. Please listen and download, it might give you a laugh, we enjoyed making it, and donate if you wish ...

Go here - https://www.facebook.com/morefordropkicks



4 comments:

  1. Some people take magnesium by self injection, which avoids the stomach upset issues -- not the most pleasant way to go but can be effective.

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    1. yes good idea, I will look into that :) Thanks

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  2. Wow, interesting. I took Plaquenil during my Lyme treatment, and my son is taking it now. Both of us experienced a worsening due to herx reaction when we started it, but I'd never heard that it depleted Mg. My son does take Mg every day (we find that Mg malate is less upsetting to the stomach than other forms), but maybe I should up his dose to twice a day....except that I can't fit any more pills into his 6 weekly pill boxes!

    Also, because my son's herx reactions have been strong, he is still on just 1 Plaquenil a day - perhaps that's for the best.

    Thanks so much for sharing your experiences!

    Sue

    Live with CFS

    Learning to Live with CFS is now on Facebook!

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  3. Thanks for calling me a sicko ! You sicko !

    Nasty nasty nasty drugs :(

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