Wednesday, August 27, 2008

School Days

What is that strange sound? It's silence! Today is my first day alone in the house after the busy summer. Craig started 5th grade on Monday, and Jamie started 9th grade (high school!) today. So, it seems like a good time for an update on my kids' CFIDS and how they're doing these days.

(First, a quick update on me, since you've been asking...I'm about the same this week. I'm still felling pretty run-down, still have low stamina, and still feeling some knee pain, especially in the evenings. I've now taken 2 weeks of antibiotics to treat my Lyme disease and have another month and a half to go. I'm certainly in better shape than I was two weeks ago and am hoping the improvement continues. At least now I can rest more!) So, back to the kids...

Craig, who began to have CFS symptoms 4 years ago in 1st grade, is doing really well these days. By third grade, his CFS has gotten bad enough that it was affecting school attendance; he missed 45 days of school that year. That April, he started taking Florinef for Orthostatic Intolerance (OI), per the recommendations of Dr. Peter Rowe at Johns Hopkins (he's the doc who first discovered OI was a part of CFS and pioneered its treatment, especially in kids) who consults with our pediatrician. The results were amazing! In 4th grade, last year, Craig only missed 20 days of school, which might seem like a lot to some people but is really great for a kid with CFS. Best of all, Craig is mostly symptom-free most of the time. With Florinef, his chest pains disappeared, his stamina improved, and he now rarely crashes. Of course, there's no avoiding some crashes (hence, the 20 days' absent last year), but his crashes only last a day or two now.

Jamie's CFS history is more complicated. He started to show CFS symptoms after a bout of Lyme disease in 3rd grade but was still fairly healthy until the start of 5th grade (the same time that Craig began to show symptoms). At that point, Jamie became quite severely ill, although his CFS was still very up and down. He'd feel OK and attend school for a week or two, then crash badly and be unable to get up off the couch for a week or two. Jamie missed 60 days of 5th grade, and he remained very ill through 6th grade and ended up taking 2 classes with a home tutor and attending 3 classes at school about 60-70% of the time (all the rest were waived, as were all attendance requirements).

At the end of 6th grade, Jamie started taking Florinef for OI, and the effect was nothing short of miraculous for him. Florinef (plus LOTS of Gatorade) has worked so well for Jamie that he was able to attend 7th and 8th grades full-time and get back into band and soccer as well. In the past 18 months, however, we'd seen Jamie's stamina gradually decrease. He was still attending school full-time (minus crashes, of course), but we could see that it took more out of him and his days missed were slowly increasing again. This summer, our pediatrician again conferred with Dr. Rowe about Jamie, and we found out that we could increase his Florinef dose, even though he was already taking the maximum that most people take. He and our pediatrician agreed that some of Jamie's worsening was probably due to his tremendous growth. He went from 5'1" to 5'7" in about a year!

So, this summer, we increased the dose of Jamie's Florinef, and it seems to be working! His stamina is still a bit less than it was in 7th grade, but he's now able to handle more activity again. We'll see how it goes with school back in session.

As for school, I've talked to Jamie's new guidance counselor and school nurse, and they seem very responsive and ready to help. We'll meet with them and all of Jamie's teachers next week to review his middle school 504 Plan (an accommodation plan backed by federal law) and update it, if necessary. I've heard from other parents of kids with CFIDS that high school teachers tend to be more flexible and easier to work with than middle school teachers. We certainly hope so!

For more information and resources on dealing with school issues for kids with CFS, check out my post from last year on school and CFS.

As for me, I've spent the morning resting, doing some gentle yoga, a bit of writing,and enjoying the quiet!

Thursday, August 21, 2008

Lyme Disease and Allergies

First, I want to thank all of you who left comments or sent me e-mails last week. I felt awful, and your support and encouragement meant a lot to me. You reminded me that I'm not alone in this crazy life of living with CFS. Thanks!

So, it seems that I do have Lyme disease because the antibiotics worked. For the first few days, I was still severely crashed and still had bad knee pain. Then, suddenly, most of my symptoms lifted on Friday. I was able to go on the camping trip with my family to the Catskills. By Saturday, I felt GREAT - I was full of energy, and my knee pain was almost completely gone. It felt like a miracle to me. I was so relieved and felt so full of joy, as I enjoyed the gorgeous setting and being with my family. I went kayaking on the little lake; played with my niece, nephew, and little cousins; and felt like I'd been reborn.

On the downside, something up there in the mountains triggered my allergies to go berserk. By Sunday, I was feeling run-down again, with constantly watering eyes. Since returning home, I've been moderately crashed - probably from some combination of allergies, Lyme, and a very active weekend.

I went back to see my doctor on Tuesday. She's now turned 180 degrees from her opinion last week. Now that she's seen that the antibiotics are helping, she's worried that the Lyme might be further along than we previously assumed (more advanced Lyme requires different treatment strategies, including a variety of IV antibiotics). She says she's concerned because I was so very sick the last two weeks, because the knee pain was so severe, and because she can still feel a lot of fluid/inflammation in my knees. Personally, I think I was so sick because of the impact the Lyme had on my CFS. She's prescribed two months of antibiotics, and she wants to see me again in three weeks to examine my knees again.

Lyme is a known trigger for CFS - triggering CFS to start in about 11% of the people who get Lyme or triggering CFS to worsen in those who already have it. We've seen this first-hand with our older son. His first bout of Lyme disease in 3rd grade is probably what triggered his CFS to start, and we saw a reduction in his stamina after his Lyme infection last year, even after it was completely eradicated (which we triple-checked with visits to specialists, lots of lab tests, and even additional antibiotic treatments, just to be sure). So, we'll see whether this Lyme infection has any lasting effects on my CFS. Maybe the low-dose naltrexone will help my immune system to adjust.

Today, I'm trying to rest. After being so sick for the last several weeks, I felt like Rip Van Winkle this weekend, waking from a long sleep to wonder where the summer went! My kids start back to school on Monday, and there are so many things we need to do, things that I put off while I was sick. So, at the start of this week, I kept pushing myself to get things done even though I didn't feel well. My previous 7 months of feeling quite good seems to have made me forget the #1 rule of CFS: listen to your body and rest when you need to. So, I'm trying to take it easy today and recover. In fact, that's enough time on the laptop!

Wednesday, August 13, 2008

A House of Cards

Living with CFIDS is like living in a house of cards. For the past 7 months, I've been building my house, bigger and higher, feeling better and thinking I was finally in control. Now it feels like my house of cards has collapsed around me, and I don't even know where the breeze came from.

I pretty much hit bottom yesterday. I woke after 10 hours of sleep still feeling exhausted and weak, still with terrible pain in my knees. I called my doctor's office, like I'd planned to, hoping to discuss my lab results with my doctor. Instead, a nurse cheerfully told me all my blood tests were normal, and the doctor thought it was "just CFIDS." I told her I was getting worse and I didn't think it was just CFIDS. I said I wanted to try doxycycline (abx used for Lyme). She relayed my message to the doctor and came back to the phone to say, "The doctor says she is not going to prescribe doxycycline."

A panic had been building in me for the past few days as my symptoms got worse and worse, and it exploded out of me at this news. I started to cry and tried to explain to the nurse that the Lyme test was unreliable. I got no where and finally hung up in frustration. I immediately called back to the receptionist line and asked for an appointment.

When my doctor walked into the exam room a half hour later and saw me there, she was furious with me. From her perspective, I was second-guessing her decision, professing to know more than her, and had also been rude to her nurse. By this time, I was sobbing uncontrollably. I tried to explain that I only wanted a chance to talk to her directly, to understand the details of my lab results, and to discuss options, like we've always done. She gradually calmed down, and we did just that, but I was devastated that I had harmed our previously good relationship. I realize now I should have asked for an appointment from the start and bypassed the whole phone/nurse situation.

Bottom line of our lengthy discussion was that we have no idea what's causing this severe crash and knee pain. Not only was my Lyme PCR test negative (it's known for false negatives), but there was also no indication of any infection in my bloodwork. Everything was perfectly normal, in an eerie deja vu from my first year of being sick when no one knew what was wrong with me.

The best possibility is probably that some sort of virus has triggered my CFIDS to worsen...but then why not any signs of infection? She finally agreed with me that the risk of leaving Lyme untreated is too great (despite Lyme now being less probable)and said I could try 1 week of antibiotics to see if they have any effect. If not, then we agreed I should probably see an Infectious Disease specialist.

So, here I am, once again waiting and resting. As I expected, yesterday's emotional upheaval made me even sicker today, and I still feel bad that my impulsive behavior pissed off my very supportive doctor. But, having talked through possibilities and options left me feeling less panicked and more peaceful.

Now, I'm trying hard to let go of any pretense of control, giving in to the need for complete rest (it took me all day to store up enough energy for this little session on the laptop). Now, I begin at the beginning again, slowly and carefully picking up my cards and stacking them up again.

Monday, August 11, 2008

The Waiting Game

Two entries in one day? That's definitely a record for me! I've avoided any update on myself here for awhile simply because I have no idea what's going on, but lots of people have been asking how I'm doing. So, here's what I know...

I still feel pretty terrible most of the time, with general CFS symptoms (exhaustion mostly) plus really bad pain in my knees. This has been going on now for almost 4 weeks, and it seems to be getting worse. I am absolutely sure that something besides CFIDS is going on because I have felt so good for the past 6 months and had gotten to the point where I rarely crashed and, if I did, it only lasted a day.

I saw my doctor last week, and she was understanding and concerned (as always!). She ordered a bunch of tests - 8 tubes of blood! - including a Lyme PCR, parvovirus, basic CBC, and a bunch of inflammatory markers. I have been waiting, rather impatiently, for the results. Her office called Friday afternoon while I was napping to say the Lyme test was negative and the parvovirus test wasn't back yet. By the time I got up, the office was closed for the weekend.

FYI, both Lyme and parvovirus are known triggers of CFS - that means these infections can trigger CFS to start or trigger a worsening in someone who already has CFS.

Lyme seems to be the most likely culprit, despite the negative test. Lyme tests are notoriously inaccurate, even though the PCR is a bit better than the standard antibody tests. So, I am anxious to try antibiotics. We live in an area where Lyme is almost epidemic, and many doctors here understand that the only really accurate test is to see if the patient responds to treatment. However, I know that my doctor will want to see all test results before trying anything.

Meanwhile, I am impatient not only because I'm sick of feeling so crappy, but also because we're supposed to go camping with my whole family this coming weekend. Three summers ago, I pushed myself to go on a family vacation when I was badly crashed, and it was a total disaster that I still have not gotten over emotionally. My entire family was in deep denial about the severity of my illness back then and just pretended everything was fine all week, when I was mostly bed-ridden. It was awful. Things are much better now with some family members, but others still don't acknowledge how my life has changed. So, I would really like to be feeling better by the time Friday rolls around.

So, I'm waiting. I think I'll leave another message with my doctor before the office closes for the day to make sure they call me immediately when the lab results are all in. Then, I better go lie down again. Even the laptop is too much for me right now.

More News from the Virus Conference

Here's another, very detailed summary of the recent Symposium on Viruses in Chronic Fatigue Syndrome, written by Cort Johnson who runs the website Phoenix Rising - A Guide to CFS.

If you've never read Cort's stuff or been to this website, you're in for a treat. A CFS patient and lay-person, Cort does a great job of reporting on the latest news in the CFS world and translating complex medical information so that it's easily understandable. He's got lots of other informative features posted now as well.

Wednesday, August 06, 2008

Anyone use NADH?

I saw this article on about NADH supplementation and was curious if anyone else out there had tried it and found it effective?

I tried it a few years back, and it did increase my energy, but I found that it disturbed my sleep. So, I didn't stick with it.

Anyone else have experience with NADH - good or bad?