Once again, I'm sorry for the long silence. Last week was another very tough one - Jamie missed another four days of school - and I had a mini breakdown Friday evening when we ended up spending 4 hours at the local clinic waiting for his weekly saline IV. It's just been a very difficult and challenging time for us lately. Things are looking up a bit this week, though, and I thought you might be interested in what's been going on.
Jamie and I went to see our Lyme doctor in NJ last Thursday (part of the exhausting build-up to the breakdown!). Jamie had to lie down in the backseat on the way there, and I had to do all of the driving - I had gotten used to his help! I emphasized to the doctor just how horribly incapacitated Jamie has been.
The doctor decided to stop Flagyl, Jamie's current treatment for babesia and Lyme. He was only taking a 1/2 pill a day (typical dose is 2-3) and was still so sick he couldn't even get up off the couch. The doctor said it wasn't doing him any good right now because it was obvious that his body wasn't able to clear out the toxins (i.e. dead bugs) in his bloodstream (that's called a herx reaction), so it would be better to just quit for now, try something else, and maybe go back to the Flagyl at a later date when he can handle it better. So, now he has prescribed doxycycline, at a relatively low dose to start with (half what I take), and then adding Plaquenil two weeks later. This will target the Lyme most directly. The doctor says the strategy with multiple infections is to target whichever one has the most prominent symptoms. Lately, Jamie has had very severe joint pain which is a primary characteristic of Lyme (he was on the Flagyl to target babesia because months ago, he had severe night sweats).
So, that's the new plan. Jamie stopped taking Flagyl last Thursday and has now been off all antibiotics for 5 days. The result? He's feeling much, much better. He went back to school for a partial day on Monday and went all day Tuesday and is there again today. This is such a huge relief to all of us! Of course, he needs to start on doxycycline now which will almost certainly set off another herx reaction...but we are hoping this time it will be milder and more tolerable.
I spent all weekend online, researching how to lessen herx reactions and how to improve the methylation cycle. The Lyme doctor mentioned this might help Jamie, and I told him I knew that was a problem with people with CFS, too, and that a couple of doctors had developed protocols for treating it. Here's an article about treating the methylation cycle and a Q&A about using the simplified protocol . The problem is that the doctor who wrote the Q&A says that people with Lyme should first get rid of their infections. That's a real catch-22 because part of the reason Jamie can't get rid of his infections is because this process isn't working properly in his body. So, we may try adding just one or two of the supplements suggested instead of the full protocol.
It's horrible to think of seeing Jamie suffer again, so we've decided to give him a short break off the antibiotics, to allow him to catch up at school and maybe even go to his Homecoming dance next weekend...but then. we will need to start the doxycycline and see what happens.
I would greatly appreciate hearing from anyone who has experience with the methylation treatment protocol or with taking a break from antibiotics during Lyme treatment. It's so hard to know what are the right things to do sometimes. For now, we are just trying to take things one day at a time, as always, and enjoying this brief good period.