Just so you know, I am writing about my symptoms and experiences off the meds for the past week, so I am forewarning you ;) in case you find it all a bit boring.
I have been observing my body off of medications because I have wondered what it would feel like going off of Doxycycline after 20 months...and Zithromax after 6. I noticed a few symptoms came back that I have not had for a long time...teeth hurt.....glands got really big in neck and under my arms....knees and shins hurting enough to wake me at night again...etc. etc. etc. I did not expect this right away ~ I have also been wondering why the Bart die-off pain has stuck around while I was off the meds.....and just found an article today that mentioned that Zithromax stays in your body for at least 10 days after you stop taking it... Today is the 8th day off and I will restart Monday. Nice to have that question answered. Another interesting note...I thought once I went off the meds I would not want to go back on, but I am ready to take the meds again...it feels weird to be off them and I don't like the idea of the spirochetes coming out of hiding and planning any sneak attacks...okay, I know that sounds a bit strange...but that is how it feels...I have gotten used to the daily fighting that the antibiotics do to help me heal. Not looking forward to the pain and brain fog again but want to get the upper hand with the bacteria.
When I think of how it can be and will be, I think of my friend Marie and how much better she feels after 4 yrs of treatment. She was ill for over 20 yrs with CFS and it turned out to be the result of untreated Lyme Disease ~ she is the reason I looked for a doctor to test me for Lyme in the first place. She used to be where I am and she can do so much now! I keep that in mind when I get discouraged. I had someone else tell me that she looks forward to being where I am...since she is bedridden, just got her positive Igenex tests back, and has not started treatment yet. She is where I was 20 months ago. I am where Marie was around 2 yrs ago.....and Marie is not yet completely well, but living a normal life. We all are on different levels of a rocky uphill path, and yet our journeys are united by the common denominator of Lyme Disease.
Another interesting note...I thought once I went off the meds I would not want to go back on, but I am ready to take the meds again...it feels weird to be off them and I don't like the idea of the spirochetes coming out of hiding and planning any sneak attacks...okay, I know that sounds a bit strange...but that is how it feels...I have gotten used to the daily fighting that the antibiotics do to help me heal. Not looking forward to the pain and brain fog again but want to get the upper hand with the bacteria.