posted
I wanted to give a brief summary of my last 2 weeks, which has probably been the most interesting/bizarre time period I've experienced. I would be grateful for anyone who is willing to take a minute to read this and share their thoughts. I feel I can benefit from your point of view.
Background: My illness began in May of last year and I was diagnosed the week of Thanksgiving. The initial onset of the illness was headache and neck pain, followed by fatigue. By late June, I was waking to find my arms completely numb. This was preceded by several weeks in which I felt like there was literally a mini-jackhammer in the back of my neck running around the clock. With treatment, this disappeared over a 2 to 3 month period. Now I've been left with the dreaded night time vibrations that take place in my neck and upper back during sleep. (This is the short version, of course. There were a lot of other symptoms that came and went.)
Several weeks ago, I started to research and read about the effectiveness of oral antibiotics and the recommended dosages of each. Having been on 400 mg of doxycycline daily for a year, I wondered if this was an adequate amount to penetrate the BBB considering my size and weight (6'1", 200 lbs).
Admittedly out of frustration, I increased my dosage of doxycycline to 500 mg (300 mg with breakfast and 200 mg with dinner). I continued my rifampin at 300 mg at lunch and 300 mg in the evening.
After about 3 days on the increased dosage, I began to feel very tired. I wasn't sure what was causing the fatigue and I was concerned that the increased toxicity from the doxycycline was responsible. About a week after increasing the dosage, I spent almost an entire night for the first time in a year with almost ZERO vibrations in my neck and upper back. The next morning I was actually in disbelief since I've become so used to the annoying sensation.
Oddly enough, the vibrations were gone over the following two nights as well, but they were replaced by constant muscle twitches all through my arms. It actually felt like little air pockets popping throughout my arms. This was almost as though the "bug" had decided to move, perhaps into a different part of the nervous system to cause these muscle twitches. I also had a sudden "sleep jerk" through my body upon going to sleep.
I decided to stop the antibiotics for a couple days just to see what might happen. The muscle twitches have subsided quite a bit and the vibrations are weaker but are definitely coming back. I'm also not feeling as tired as I was while on the 500 mg dosage of doxycycline.
So my question is...what should I make of this? I do not believe that the change in symptoms is a coincidence. I'm hoping to get your thoughts and opinions on this. I truly appreciate anything you can share on this strange 2 week period.
posted
Don't stop Rifampin. Very bad and can cause real problems with resistance!
Sounds like a herx and this is good news. More muscle twitches means the bugs are unhappy in my case. I would keep it up!
Posts: 770 | From USA | Registered: Jul 2006
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quote:Originally posted by Lymetoo: Are you sure it's safe to take 500mg of doxy??
Does sound like it is working!
I think I had read where Burrascano feels some patients may not up to 600 mg of doxycycline per day to penetrate adequately and become bactericidal. Can anyone confirm this?
Posts: 131 | From MD | Registered: Jul 2008
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posted
Maybe your doc should test you to see what dose of Doxy you need? Dr B tested hubby when he was taking Doxy -- at the time he had gastritis which may have helped him absorb the med better? His testing showed he needed only 200 mg of Doxy at that time.
Can't remember the exact procedure now -- think we tested peak and trough dose -- waited a certain number of hours after meds before getting blood draws.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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quote:Originally posted by seibertneurolyme: Maybe your doc should test you to see what dose of Doxy you need? Dr B tested hubby when he was taking Doxy -- at the time he had gastritis which may have helped him absorb the med better? His testing showed he needed only 200 mg of Doxy at that time.
Can't remember the exact procedure now -- think we tested peak and trough dose -- waited a certain number of hours after meds before getting blood draws.
Bea Seibert
It seems as though I could never meet a doctor that would think to do this, let alone actually do it. Goodness. This seems so far away from me.
Posts: 131 | From MD | Registered: Jul 2008
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posted
Mayberry, are you having any stomach or esophagus problems with the high dosage of doxy?
I'm on 100 mg twice a day, and the concern with raising it is how hard it is on the stomach.
Dr. had a patient that it ate a hole in her esophagus at 100 2x day. Dont' want that to happen. =)
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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