Friday, September 19, 2008

A Good Day

My husband is out of town, called down to Texas for an emergency trip to consult with a plant that got badly flooded in Hurricane Ike. That means I'm on my own with the kids. The worst part about that is having to get both boys to school on time because my husband normally takes care of Jamie, whose bus comes at 7 am. So, my alarm went off at 6:15 this morning, which usually portends a very tough day for me.

I was pleasantly surprised, though, to find that I felt really good this morning- not just OK, but really, truly good. I had almost forgotten what that feels like! Instead of being overwhelmed by too many plans and not enough energy to carry them out, today my goals and plans energized me, and I followed up on some things I've wanted to do for a long time.

I suspect my good fortune is due to starting a second antibiotic this week for Lyme and associated co-infections. I've been on doxycycline for 6 weeks now, and this week my doctor added Zithromax because she suspects I may also have some of the other tick-borne infections that are becoming more prevalent. I felt bad the first day (yesterday) and assumed it was a new herx reaction, then woke up today feeling like a real person! I hope this means that I'm coming to the end of my battle with Lyme disease, though I know better than to make assumptions based on only one good day!

My boys are doing well, also. This is the best start to a school year that we've had in 5 years, since Jamie became very ill with CFS and Craig first started to show symptoms. All three of us were crashed for a couple of days due to a virus last week, but Craig only missed 1 day of school, and Jamie didn't miss any (he was sickest on the weekend). In fact, Jamie hasn't missed a single day in this first month of school - definitely a record! He's also been playing soccer without crashing the next day. It seems that the increased dose of Florinef is doing the trick for him. He's now carrying two liters of Gatorade to school with him each day and drinks a third one on soccer days.

So, we're enjoying a good day here in the Jackson house, with hopefully more to come.

P.S. If you're looking for a good book to read, check out my review of The Book Thief on my book blog.


Anonymous said...'re taking antibiotics and you have CFIDS? I guess you haven't heard of candidiasis aka Candida Albicans? Once you get candida, you're in for a downward spiral and the only "cure" is a really weird and restrictive diet. Symptoms of candida? I'll let you google but the main one? CFIDS! Good luck to you, sounds like you've decided to go the MD route, and that leads to no good with drugs that will give you more and more symptoms oops I mean side effects!

Sue Jackson said...

Thanks for your note and advice. In fact, I take antibiotics for a new case of Lyme disease, not for CFIDS. I am well aware of the problems of yeast overgrowth and take a very strong probiotic twice a day and have had no problems at all.

As you guessed, I do prefer a medical approach to dealing with CFIDS. I pay very careful attention to the latest research and try to learn from that. While I know that some people are hesitant to take medications, I personally base my treatment program as much as I can on hard science - it's just what I feel comfortable with. Medications have helped me to improve tremendously over the 6 years I've had CFIDS.

In an illness as variable as CFS, there are many different treatment approaches that work for different people. Each person needs to do what feels right to him or her, in consultation with a knowledgeable doctor.

Thanks for taking the time to comment.


Anonymous said...

Ofcourse you need antibiotics for lyme. There is no way around it.

I have used Zithromax as well. Unfornatly the herx was to strong for me (I didnt take it for lyme). The power of that antibiotic is strong for CFS. I have chlamydia pneumonia and unfortnatly it led to CFS.

As you probably know there are a lot of antibiotic long term treatments like CPNhelp or Marshall protocoll. But the outcome of those treatment are uncertain. I belive you have choosen the best treatment for you and your family with Low-Dose Naltrexone Treatment and florinef.

My question: Do you take florinef or is just your kids... and what kind of probiotics do you take. Have you found a single strain of positive bacteria yet?

Sue Jackson said...

Hi, Erik -

Thanks for your comments.

Only my kids take Florinef. I tried it but didn't see much effect. Dr. Rowe - the doc who first identified OI as part of CFS - says that it is very common for Florinef to work amazingly well in kids and teens and very rare for it to work at all in adults (at least by itself). Even after all of his research, he's not sure why. I do know of adults with CFS who have had good results treating OI with other medications, like SSRIs or a combination of Florinef and midodrine.
As for probiotics, it's a constant struggle for me! When I got CFS, I developed a lactose intolerance and most probiotics are they actually make my stomach problems worse! I take a (fairly expensive) vegan probiotic called All-Flora (made by New Chapter) that I buy at a local health food store. It's kept refrigerated and contains 10 different probiotic strains. It works well for me. Despite that research I cited awhile back about only single strains of probiotic having any effect on the immune system, the multiple one seems to work for my GI problems - which is my highest priority right now since I'm on antibiotics for Lyme. So, maybe I'm not getting any immune system help from it, but it seems to be doing its job keeping my gut happy and preventing yeast overgrowth.

Thanks for taking the time to write -