Wednesday, October 05, 2011

Changes in Lyme Treatment

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.


Renee said...

Sorry to here Jamie is doing so poorly is heartbreaking to here what he is going through.
There are more than one school of thought with going off abx for a long period of time....My doctor had me pulse at one time...4 days on adn 3 off....I have taken a whole week off once and Joel too....but the consequences of going off is that symptoms will eventually get worse and bacteria increases in the body. They will become more active and so when he does go on the herx can be more intense at first like it was for us. Still pulsing can be helpful. Brings them out of hiding! Lets hope the doxy is just the right abx for him!

I don't really know if this is helping you or not. It is good to hear the off the Flagyl he feels better...that could be because the Flagyl was also so hard on him besides what it is killing.
Like I said before they say detoxing is everything. I have more pain due to my inability to detox well...thus the ultra clear and addv. clear I take to help my liver detox ....and teh burbur, etc. Also, I cannnot sauna yet and that helps Joel tons. Truly, it is a catch 22 for Jamie with the CFS too...
I have never head of this protocol you mentioned but it sounds interesting.
Keeping you both in prayer, Sue and hoping you are able to rest and Jamie gets the relief he needs soon.

Sue Jackson said...

Thanks so much for the comment, Renee - it's always so valuable for me to hear your experience. We are watching Jamie closely for signs of worsening and will start the doxy soon. I used to be against pulsing, until I saw Jamie suffer so horribly. I know the experts say it's not good when the herx is that bad and you shouldn't suffer through it. We will try to go more carefully this time. I've heard from lots of people that Flagyl is a nasty one.

What are ultra clear and addv. clear?


Renee said...

Hi Sue
Jamie is blessed to have you guys as you are so well informed and on top of things.

Metagenics Ultra Clear and Adv. Clear are a powder made up of speicific vitamins and minerals and a pill that support the body in detoxing the liver. Joel takes something called Daily Enfusion. Our LLMD put me on this and it does help.
We don't usually pulse either, but had to a few times.

Sue Jackson said...

Great!! I will look for those. Thank you!


Elaine said...

Sue, I know so very little... I'm so sorry you all have had such a hard time, especially Jamie.

My thoughts and prayers are with you and hope that you find the right blend, dose, and timing for all the treatments!


Baffled said...

Sorry to hear about Jamie. That stinks. I know you've been busy but you might want to read a few posts over on my blog. I started glutathione IV treatments. Because the doc suspected that my detox system was a complete mess he started me on a half dose. I herxed for two days but then started to feel much better.

I suspect that if you start with the IV treatment then the herx reaction to die off from jump starting the detox system will be less severe.

I'm also in the midst of a huge change in diet and adding juicing to my food regimen. Dominique has joined me in trying to use food to make our bodies work better. We both figure what the heck it can't be worse than the drugs. And if it works bonus!

BTW, while the glutathione isn't covered by insurance it isn't very expensive either. Everyone is different and I have no idea if you want to pursue this or not. I just wanted to let you know about it.

Best wishes to you, Jamie and your family.

Sue Jackson said...

Baffled -

Wow, thanks for the update - I will head over and catch up on your blog later.

That is exactly what I was talking about with dysfunction in the methylation cycle - that ties in directly to glutathione. The protocol I was describing includes supplements that will help to create glutathione in the body, rather than supplementing with it directly. The idea is to help your body create its own glutathione so it will heal. Read the information at the links I provided for more info.

I will definitely try a mini version of the protocol with Jamie.

Thanks so much for sharing this with me - you're right, I just haven't had time to visit any blogs with all that's been going on here.


Anonymous said...

Rough go of it lately, (((Sue))).
So sorry :-(.
Have you heard of Neem to clear the blood? My friend with Lyme, FM, CFS says it has helped her a lot.

Sue Jackson said...

I hadn't heard of that, Judy, but I will look into it - thank you!

Keena said...

I am so sorry to hear that Jamie is still so ill. I wish I had something comforting or encouraging to say. I will continue to pray for him and your family..