Monday, January 02, 2012

Is Today the First Day of the Rest of My Life?

...a life free of Lyme disease?  Well, I hope so, but I'm more than a little nervous.

Jamie and I went to see our Lyme doctor a couple of days before Christmas.  He was pleased with Jamie's progress  - he's moved up from only tolerating one doxycyline pill every 3 days to being able to take one every day.  Of course, he had a bit of a set-back this past week.  He went up to 2 pills a day (the dose he is supposed to take) and has been badly crashed this entire holiday week.  However, his brother has had a cold at the same time, so it's hard to tell how much of this crash is herx reaction and how much is CFS immune stimulation.  He's had joint pain, so at least some of it is herx reaction, so we've backed off on the dose again to one pill a day...that's still progress from where he was two months ago.

As for me, my doctor thinks it's time to try going off my Lyme meds again.  This both excites and terrifies me!  I have been taking antibiotics for Lyme disease since I first got the infection, in the summer of 2008.  That's 3 1/2 years of daily antibiotics, plus a bunch of supplements, and additional medications to try to get at the stubborn Lyme spirochetes.  That's a total of 28 extra pills a day!!

I've tried stopping the treatment twice before, and both times, my Lyme symptoms returned within a week or two.  This last time, the doctor added lots of extras, including a second, more powerful antibiotic, an antifungal, and additional we hope this has done the trick.  When he told me to stop my meds, I said I'd wait until after the holidays.  So, I quit taking them today.  I just refilled all of our weekly medicine boxes, and it was a huge relief to have 28 less pills to worry about each day (and two less weekly reminder boxes for me).

Now, I wait.  This is the tough part.  The last two times I stopped, I went through a 2-month long herx reaction again when I had to restart, so I am really, really hoping this time will be different.  Wish me luck!  I'll let you know what happens.  Hopefully, this will be the start to a healthier new year!

Happy New Year!


Sarah Dawneé said...

Oh! I hope it goes well!

Happy New Year to you, Sue!

Char said...

Best wishes for you all in this NewYear. I found your blog last night as I was searching for answers for both my daughters who have had CFS for 4 years. I can relate to the crashes which my 17 year old is having now also. Interestingly, we live 30 min. south of Rochester. Hope to talk some day with you. Charmagne Flanigan

Renee said...

I second that....hope it goes well! Praying for you as you wait....and hoping this time the bugs are gone or in remission. Glad Jamie can take 1 pill a day now. Doxy was the only one I could take ...4 a day actually and did that for 3 yrs. Started out really slow too....
Hope this year is filled with lots of joy and great days and that Lyme becomes just a memory.

Pamela said...

Wishing you lots of luck & hoping that this is the time! The first day of the rest of your life :)

Sue Jackson said...

Sarah & Renee -

Thanks for the good wishes!

Char -

So sorry to hear your daughters have CFS also. We have a parents group on Facebook that I think you'd find very helpful. You can read more info at this post:

and/or just e-mail me at jacksonde at E-mail anyway - I'd love to chat with you! Here where I live now, in DE, there are two of us moms who grew up in Rochester and now have kids with CFS!

Looking forward to getting to know you -


Joanne said...

Sue wishing you all the best for your antibiotics free 2012plus.

I stopped early this year after the best part of 4 years, I still have some Lyme like symptoms but very mild and they have improved over the year. Never say never with Lyme but fingers crossed going in the right direction. I do so hope this works for you.

At Home on the Rock... said...

I hope it all goes well!

Anonymous said...

Hoping it works this time and 2012 is off to a great start! Happy New Year!