National Invisible Chronic Illness Awareness Week

This week is National Invisible Chronic Illness Awareness Week. The official website for the awareness week has lots of good articles on coping with illness yourself and helping others.

You can also celebrate this week by helping to educate our leaders about CFS. The CFIDS Grassroots Action Center has 5 action items available this week. Each takes only moments for you to send to your own government representatives.

As for me, I'm still battling symptoms of Lyme disease as well as CFS. I'll post again tomorrow with more details about how I'm doing. I have a Lyme check-up with my doctor tomorrow morning, after being on antibiotics for 1 month.

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!

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!

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.

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.

Anyone use NADH?

I saw this article on immunesupport.com 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?

Resting

I seem to be in a bit of a slump lately. It began while I was on vacation, when the boys and I all took turns for a couple of days with some sort of virus that caused nausea and (for me) achy knees. After a couple days of rest at my in-law's house in Oklahoma, I felt better again and was quite active and well for the rest of the trip.

Since returning home, though, I've continued to have lingering symptoms on and off, mainly very painful, achy knees and lower legs. Yesterday, I even had a mild sore throat. I'm still much better than I used to be - that was my first sore throat since May, when I had bronchitis. I haven't been badly crashed but have had lots of days where I'm just OK instead of good (which I've grown rather fond of!)

I looked back through my records today and saw that this weird achy-knee-thing has happened to me before and generally bothers me on and off for a month or two before disappearing again. Interestingly, it seems to hit me most often in the summer.

I will probably go see my doctor for a Lyme test, just because that is an ever-present danger where I live, but I suspect I'll just have to wait it out as I have in previous years. So, I'm trying to rest as much as I can to avoid getting worse. I'm currently lying on the couch, using my laptop as its name suggests for a change!

Sometimes with CFIDS, there's nothing to do but rest and wait...two things I find very difficult!

New Research Links CFS to EBV and HHV-6

I just read some fascinating new research that proposes a strong connection between MS and CFS and links both illnesses to latent EBV and HHV-6 infections. It's so refreshing to see some solid scientific research after all the crap that's been published lately promoting graded exercise therapy for CFS! It looks like the new approach of treating CFS with anti-virals may be on target.

For more on the latest research into CFS and viruses, check out these summaries from the recent International Symposium on Viruses in Chronic Fatigue Syndrome and Postviral Fatigue, held in June in Baltimore:

Summary from Dr. Bell

Summary from CFIDS Association's Scientific Director Suzanne Vernon
(NOTE: Dr. Vernon's summary talks about the use of valganciclovir. This is the chemical name for the drug commonly known as Valcyte).

Lots of wonderful, in-depth research that will hopefully lead to more effective treatments for all of us!

To help support more CFS research, consider donating what you can to the CFIDS Association's Campaign to Accelerate CFS Research.

Post-Vacation Slump

We returned from vacation over a week ago, but I've been too overwhelmed to take the time to write in my blog. As soon as we got home, I felt completely inundated with more work than I could even bear to think about...over 300 e-mails, writing projects that needed to be completed, pages and pages of to-do lists, a filthy house filled with vacation clutter, not to mention mountains of laundry. To top it all off, I had less than a week to pull things together, do all that laundry, unpack and re-pack my two boys, and drive them to Connecticut for their week on their grandparent's sailboat.

As you might suspect, I felt crummy, too (stress anyone?). I also had the post-vacation blues. We had a wonderful three weeks, and I could have easily stayed on the road, exploring new places and having fun. On vacation, my life has this pleasant narrow scope where the only things I have to think about are what we'll do that day and what we'll eat. Living in our pop-up camper is great - I can clean up the whole place in minutes! No phone calls, no e-mails, no work deadlines, no "have to do's."

But, vacation can't last forever, and I have now readjusted to REAL life. I drove the boys to CT last Thursday and returned on Friday to an amazingly clean (our cleaners had been here!) and QUIET house. My husband and I enjoyed a weekend that was both relaxing and productive, eating foods that our kids hate, spending time with friends, and even doing a little home improvement work that never gets done with kids around.

Even more thrilling, I now have three whole days entirely to myself, since my husband left on a business trip today. Three days to take care of no one but myself in a clean, quiet house - ah! Of course, I love my sons and my husband, but this little break is just what I need to catch up and recuperate.

If you'd like a peek at all of the places we went on our trip and all the fun things we did, take a look at our vacation blog (to read the entries in order, scroll down to the bottom and read from bottom to top). We really did have a great time, and I was pleasantly surprised at how good my stamina was. We went hiking, climbing on rocks, horseback riding, and lots of other activities, and I never once had an exertion-triggered crash, not even for a few hours! Jamie didn't fare so well; it was as if he and I had switched places this year in terms of physical stamina. He has a doctor's appointment next week when he returns - I'll let you know how things go.

I'm also planning an update this week of how I'm doing medically. Nothing has changed much from my last update, but people e-mail me all the time to ask, so look for an update soon.


P.S. to Ashley from Philadelphia...
I've tried to reply to your e-mail about doctors, but I keep getting error messages when I try to send my reply. Please e-mail me again, and I'll try again.

On Vacation

Just a quick update from Oklahoma, where we're visiting my in-laws. We're enjoying our vacation so far and had a good trip out here. It's a little strange this visit because my mother-in-law recently moved to a nursing home, but we're visiting her every day and bringing her home for home-cooked meals and, well, just home.

My month-long streak of feeling great finally ended with a mild crash. Craig had a couple of bad days earlier this week, so I suspect some sort of virus got to both of us. I've had a couple of days with a queasy stomach, achy knees, and feeling run-down. I've had that odd combination of symptoms before. I'm not back to 100% yet but doing much better today. I even baked some zuchini bread this morning.

So, all in all, doing pretty well and hoping to get back to great by tomorrow!

Feelin' Good!

Still very busy here - now we're getting ready to go on vacation, taking our annual road trip to visit family. This year we'll be going to both Oklahoma and South Dakota. Lots of long miles, but we love these trips. We really enjoy camping in National and state parks across the country, seeing the sights, and finding cool out-of-the-way local food (ever watch Diners, Drive-Ins and Dives on the Food Network? We love that show and are planning to check out a few of their recommendations).

Even with all the stress and rush of preparing for such a big trip, I've been feeling really great. On my scale of 1 to 5 that I track, I've had a full week of straight 1's and haven't had a single bad crash day in over a month. So, I'm really looking forward to this trip.

My almost-14 year old son, Jamie, has been struggling a bit lately with lower than normal stamina and more sleep problems. He's grown tremendously in the past year - our relatives hardly recognize him when we see them! So, the doctor and I think he may be growing faster than some of his medications can keep up with. We had a wonderful visit with his pediatrician last week. She is just amazing, taking the time to cover every single aspect of CFS while we're there. She made some recommendations to try to help improve his sleep, and we're hoping that will help improve his stamina as well. He's still doing fairly well, just resting a bit more, so he and Craig are also looking forward to our vacation. All those miles in the car are actually pretty relaxing for those of us with CFS and keep us off our feet part of the day! We have a huge stack of audio books to bring along.

Hope you're all enjoying the summer and feeling good, too!

Letting Kids Be Kids

I've neglected my blog a bit lately because we've been so busy around here. The last week of May and the first week of June were packed full of end-of-school events, soccer stuff, work-related travel, travel to see family, and houseguests. Whew!

In the midst of all that, our two boys each had friends sleep over one Saturday night. I was trying to help out their parents, one of whom has been very sick (most likely Lyme disease) and another one who broke his foot. Besides, our kids love to have their friends sleep over, just like any other kids. Sleep-overs at our house are a bit different, though, because both boys have CFIDS and will crash if they don't have enough sleep.

So, on this particular Saturday night, my husband came up from the basement after shushing the boys for the tenth time. He was completely frustrated - by the impossible task of trying to get four boys to settle down but also because we're in the position of having to interrupt sleep-over fun to make sure our boys will be able to get to school on Monday morning. He said to me, "When will we be able to just let kids be kids?"

We both recognize how fortunate we are, that Florinef has worked so well for our boys. We know of many kids with CFIDS who are too sick to even get up off the couch (and we went through that with our own sons). They really are able to do a lot of what healthy kids can do now. But, we still have to be constantly on alert - take your medicines, drink more Gatorade, don't stay up too late, take a nap so you won't feel bad later...

So, now it's summer vacation. What a relief! We still have to be vigilant about many things, but we can loosen up a little bit without worrying about missing days of school. Already, the boys have had several sleep-overs (we still can't let them stay up past 11), have had friends over almost every day, have enjoyed our community pool, and have spent wonderful hours playing in creeks and building dams. Summer is a wonderful time for us, without the constant specters of homework, make-up work, and counting days absent. Now is when we can let our kids just be kids.

CFS In the Local News!

Last night, I was flipping through our little town weekly newspaper. I got to the editorial page and was surprised to see the headline"CFS Misunderstood, Debilitating Disease" at the top of a long letter to the editor.

"Hey, this is great! Our newspaper printed something about CFIDS!" I said to my husband. Then I moved my eyes down the column and saw my own name at the end of it! I was completely perplexed because I hadn't written a letter to the paper, and I didn't even remember writing these particular words (that's brain fog, for you). Then, I realized it was one of the letters I'd sent through the CFIDS Association's Action Center earlier this week. That's why I didn't recognize the writing - the Association wrote most of it, except for the two paragraphs I added about how CFIDS affects us.

I was so excited that they printed the letter, in its entirety! It took up a third of the page and was set off in an outlined box. Isn't that cool? Plus, it was nice to learn I'm not completely losing my mind and forgetting what I wrote!

It's not too late - you can do the same. Using the action center only takes a few minutes, and it works. Maybe your local paper will print a letter, too.

Real Strength

On Sunday night, after I'd spent the weekend resting, my husband said:

"You know what most people don't get about CFIDS? That the hardest part is not doing all the stuff that you really want to do because you know it'll make you feel worse later. That requires real strength."

He's right. In our society, strength is seen as pushing on through adversity, continuing to move and do and strive no matter how you feel. In CFIDS, that's counter-productive; the harder you push, the sicker you get. But many people see this kind of proactive rest as weak or lazy. This is one of the hardest and most misunderstood aspects of CFIDS.

And aren't I lucky to have such an understanding husband who truly gets it? Yeah, I am.

Happy Mother's Day!

Happy Mother's Day to all of the wonderful mothers out there who work hard to take care of their families in spite of living with CFS and to all of the moms taking care of sick kids or other sick family members. You all deserve a day of rest and celebration!

That's my Mom, my two sons, and me (with my niece) at my niece and nephew's birthday last year. It's one of the few photos of me with my mom, since I'm always the one taking the pictures! My mom and her husband will be visiting next weekend.

I'm still severely crashed, though my sore throat is a little better. My wonderful family helped make breakfast this morning, gave me piles of wonderful and thoughtful gifts and cards, and is planning a surprise dinner for me tonight. I wish I could get outside and take a hike with them, but I'm content just to spend my mother's day resting, with my amazing husband and loving sons nearby to take care of me. I am hugely grateful that I cancelled our planned trip to Connecticut this weekend - I would have been in much worse shape traveling.

Happy Mother's Day!

Down Again

I finally got Craig back to school and back on his feet, and on Thursday I felt really good for the first time in two weeks. Then, last night, I kept waking up with my throat so sore it felt like I had swallowed barbed wire. I finally got up at 6 am to take some ibuprofen for the pain, but I couldn't even swallow water. I ate a spoonful of honey, took the pills, and went back to bed until 10 am (unheard of for me!)

I don't know where this one came from, but I feel achy all over and have this awful sore throat. This isn't my usual CFS sore throat (which I haven't had much anyway since starting naltrexone); my glands are swollen hugely. I guess it's another infectious trigger - my older son and best friend are both feeling poorly, too.

Well, nothing to do but rest and wait.

Keeping Things in Perspective

My 10-year old, Craig, has a nasty case of bronchitis; the doctor said it was on the verge of turning into pneumonia. He's been home sick from school for the past two days, feeling awful.

Yesterday, I caught myself starting to feel depressed. I saw my poor little guy lying on the couch like a limp rag, and I felt helpless. Plus, I felt sorry for myself since I was sick all last week, my older son was sick, and now I have another sick kid to take care of, so I haven't gotten any work done in awhile.

Then, I remembered all the other Moms of kids with CFIDS that I've heard from lately - many of those kids newly diagnosed (or not yet diagnosed) and so ill they can't go to school. All those kids, all over the world, who are too sick to get off the couch and all those parents who don't know what to do about this crazy illness. I also remembered when we were in that same place - day after day of watching our kids suffer and being unable to help.

I realized how very fortunate we are. We've found treatments that help our kids to live an almost-normal life. These crashes we've gone through lately have become unusual events.

This is part of the reason why I write this blog and why I try to answer all the e-mails I get from parents and from adults with CFS. We're all in this together, battling this mysterious disease that has the potential to take so much from our lives. Yes, it's a struggle every day to keep going in the face of such challenges, but I can't feel sorry for myself. I need to keep going for myself, for my kids, and for all the other millions of people out there who share these challenges with us.

Today, I used the CFIDS Association's Action Center to send letters to the media and government officials to support additional funding for CFIDS research. It only took 10 minutes, but hopefully, I'm helping to get the message across that this illness deserves more attention. The more letters that go out, the better chance we'll be heard, so go to the website now and send your own letters. One of the letters concerns a Congressional meeting on CFIDS this Thursday, so don't put it off. We have to keep fighting this illness however we can.

The Lost Week

I haven't written in my blog in awhile because I've been caught up in the usual rollercoaster of CFIDS. I had some good weeks, but my husband was away on business for almost two weeks, so I was quite busy just taking care of the kids and the house on my own and trying to get some work done.

Last week was one of those lost weeks of CFIDS. I was severely crashed for a full eight days, able to do nothing but move from the bed to the couch and back again. I have a huge backlog of e-mail that I'm ignoring this morning while I write in my blog!

For me, crashes that severe and that long-lasting are almost always triggered by some sort of virus. My older son was also crashed for a few days last week, though he was able to go back to school on Wednesday, so I suspected a viral trigger. Now, my younger son is very sick, with heavy congestion and a cough - perhaps this is the virus that's been causing all this trouble? Since Craig's CFIDS is much milder than mine or Jamie's, he tends to actually catch viruses, while we crash but don't get the viral symptoms. That's life with CFIDS, right?

So, I'm happy to report I'm doing better, although I stayed up too late last night trying to catch up on stuff I meant to do a week ago. Having lost a complete week, I'm feeling a bit overwhelmed today with the backlog of work, but having Craig home sick will help to keep me from overdoing. I won't be leaving the house anyway (something I was looking forward to!)

A new week, a new beginning.

Low-Dose Naltrexone Treatment for CFS

For over a month now, I've been promising to write about a new treatment that has helped me considerably. Two things delayed me. First, I wanted to be sure I had all the facts straight before telling others about it. Second, about the time I felt ready to write about the treatment, I went through a period of not feeling quite so good anymore,and I wanted to make sure my earlier improvement wasn't just a coincidence. In any case, I'm finally ready to share my experiences and provide some information.

If you follow my blog regularly, you might recall that I tried 3 months of low-dose naltrexone last fall. I felt pretty good during those three months but wasn't sure whether it was due to the naltrexone. After that 3-month period, I had two terrible months with some very severe crashes. So, when we got back from our holiday family visits, I asked my doctor if I could go back on the naltrexone since it seemed to have helped. She told me that she's had similar feedback from other CFS patients and was fine with me going back on it, so she sent me a new prescription.

From January 1 through March 13, I had eleven good weeks, with only a single severe crash day the entire time. I track how I feel each day using a simple 1 - 5 scale, with 1 being great (almost normal) and 5 being severely crashed, unable to do anything but lie down and rest. For the past six years since becoming ill in March 2002, my average has pretty much stayed the same, between 2.6 and 2.9 (obviously there are good days and bad ones, but the annual average has stayed fairly constant). In January this year, my average was 2.1, and in February it was 1.7 - one of my best months ever.

Most evident to me was an increase in overall energy. I had more days when I felt like my old self. There was a clarity to my thinking that I hadn't even realized I was missing. I rarely had a sore throat, and, when I did, it was mild and didn't last long. I was able to start exercising regularly - nothing too heavy, but I could take almost daily walks and began some light weights.

I want to stress, though, that this is not a cure. I can certainly still tell I have CFIDS. I still need lots of sleep at night, still need my afternoon nap, and still have to be careful not to overdo. But within those limitations, my quality of life is much improved, and I'm able to do more. I got through our annual Mardi Gras party without crashing afterward. I attended a day-long writer's conference for the first time since beginning my writing career.

After seeing such improvement, I did some research on the internet and was pleasantly surprised to find an entire website devoted to the use of low-dose naltrexone (LDN) for immune system illnesses of all types. It's being used with great results for MS, Crohn's, AIDS, and cancer, with several studies to back up the results. There's a new study currently being conducted at Stanford on using LDN for fibromyalgia (that study is still recruiting patients). As is typical, there are no formal studies yet on CFS, but the website's description of how LDN works makes complete sense for CFS's immune system dysregulation.

Since mid-March, I haven't felt quite so spectacular (which is why I waited to talk about it). I now think a couple of factors are behind that. I started out on 3 mg of naltrexone which I got in a liquid form from a local compounding pharmacy (Naltrexone comes in 50 mg pills, so it has to be compounded to the low-dose form). After reading on the website that 4.5 mg is the optimum dose for most people, I switched to the higher dose in pill form, obtained from a recommended pharmacy at the website. For the next ten days, I had a sore throat almost every day and several crash days. I spoke with the pharmacy, and they suggested I go back to the 3 mg dose. I did that on March 20 and have felt better again. I also felt somewhat poorly this week, but my husband has also been feeling bad, so I suspect there's a virus floating around that has affected my immune system. Still, I never felt completely crashed this week. I had a mild sore throat, some aches in my legs but was still able to do some writing and get some things done while trying to take it easy.

So, that's my story. I'll continue to update my blog about LDN. I plan to stay at the 3 mg dose for awhile now but may try the 4.5 mg dose again at some point. I'm fairly small to begin with, plus there's that tendency for people with CFS to react strongly to medications. The good news is that LDN has almost no risks or side effects since it's such a tiny dose. Some people (not me) experience vivid dreams or interrupted sleep with LDN, but that seems to only last for the first week or so, when it happens at all.

If you're interested in trying LDN yourself, I encourage you to thoroughly read the www.lowdosenaltrexone.org website. It explains how LDN works, provides details of studies done to date, and gives very detailed information on dosing, compounding, and how to take it, as well as cautions for people with certain conditions or medications. The site was developed by a group of doctors who have pioneered the use of LDN for immune system disorders. I contacted several of them from the website, and they were very helpful when I had questions. I printed information from the website and shared it with my family doctor and my sons' pediatrician. My family doctor was excited by what she read and plans to try LDN for several patients with immune system illnesses.

If you'd like to read about the experiences of other people with CFS who have tried LDN, here are a few places to look:

• Immune Support message boards (you have to join but it's free)
• YahooGroups low-dose naltrexone group (again join for free; participants include those with a variety of illnesses; you can also search the list's archives)
• One person's experience treating CFS with LDN
  

So, that's the scoop. This is the first thing in six years of illness that has provided any significant improvement for me. If anyone else out here has tried LDN or decides to start it, please let me know about your experiences.

Probiotic News

I just read two amazing new studies about probiotics and immune function. Both studies showed that probiotic combinations are ineffective in improving immune function. In the studies, only single strains showed positive effects.

Ever since becoming ill with CFIDS six years ago, I have taken a probiotic combination pill every day - so have my sons. In fact, I pay a lot of money for an expensive, refrigerated brand that contains 10 different varieties of probiotic; I assumed more was better. I never noticed any significant difference in how I felt, but it was one of those things that I kept up because of all the research showing that probiotics help immune function and GI problems. Now I discover I may have been wasting my money all these years!

The first study summary shows that single strains were more effective than combination pills. The second study tested which single strains were most effective in improving immune function, in addition to showing that the combinations had no effect at all. The theory is that the different bacteria may cancel each other out.

No more expensive multi-probiotics for me! I plan to switch to a single strain brand right away. My sons' pediatrician has told me before that the brand Culterelle had more active bacteria in it than other brands in laboratory tests, so maybe we'll try that. It's not the strain that scored best in the immune system tests, though, so I may try to hunt down the ones mentioned in the second study.

Apparently, bigger is not always better!

New Pediatric CFS Article

I just read an excellent article (pdf format)about pediatric CFS recently published by the New Jersey Education Association. It is aimed at school teachers, staff, and nurses and does a great job of explaining what CFS is, how it affects kids, and what sorts of accommodations can help. This would be a good article to bring along to school administrators when you're working to get your child the educational support they need.

It's wonderful to see this kind of accurate information finally being published!

(For more information on help for kids with CFS in school, see my recent blog entry).

Cabin Fever

I'm BORED.

My two boys have been home sick all week - Craig seemed to have the nasty virus that's been making the rounds here lately and Jamie was badly crashed. They both improved a bit today, but school was cancelled due to weather (a mere inch of snow!). So, I've had a full week of caring for sick kids round the clock - lots of cooking, doing dishes (one-handed because of my stitches), reading, and watching movies. We maxed out our DVD allotment from the library.

It's been impossible to get any real work done this week - too many interruptions and distractions (not to mention at least one kid saying, "I'm hungry," every time I sit down). I've done all that I could from my laptop in the family room: paid bills, sent invoices for work, written in my blogs.

Thank goodness for books. When Jamie (my 13-year old) gets sick, he reads non-stop. Between his crash two weeks ago and this week, he's read 10 books! Fortunately, we have a huge supply of new books because I review kids' books for Family Fun magazine. I also enjoy writing reviews of both kid and grown-up books for my book blog, so writing and reading reviews has helped to keep me entertained this week.

But now it's Friday, the end of a looong week of being stuck inside, and I feel restless and bored. On the bright side, feeling restless means I feel well enough to want to do lots of things. I've had an amazingly good two months. I'm checking into a few things to be sure I have my facts straight, but I'll post more about what's helped me so much next week.

Enjoy the weekend!

One of those days (or weeks?)

You know one of those days where everything seems to go wrong? I seem to be having a week like that...and it's only Tuesday!

My Dad and his wife drove down for a visit this weekend. We had a very nice weekend together...until I sliced through my finger Sunday while preparing dinner. My Dad drove me to the local urgent care clinic, where 2 hours later, I ended up with a tetanus shot and 5 stitches in my index finger. While I was lying on the examining table, waiting for the 6 shots of lidocaine to take effect, I had a major Orthostatic Intolerance episode. I got lightheaded and could feel my face flush bright red. The nurse found me some pretzels (I asked for anything salty) and taught me a new trick - an ice pack applied to the back of the neck can reverse an OI episode. It worked pretty well, though I still crashed pretty badly later that night. Lots of stress (not to mention pain).

Today, both of my sons are home sick with fevers. I just hope it's not that nasty flu we've been hearing about on the news. That's one (of many) problems with CFS - you can never tell whether it's "just" a crash or a real illness.

That's not all. Our hamster is at the vet's right now undergoing exploratory dental surgery. He's had a hugely swollen lymph node near his right cheek for the past week. Fortunately, one of my best friends is a vet, and she's been valiantly trying to figure out what's wrong. Cancer is one possibility. Our whole family has been very upset. It might seem silly just for a hamster, but we all love him very much. So, the boys and I are watching movies and waiting to hear from the vet.

To top it off, my husband is out of town this week, so I'm on my own with sick kids, a hospitalized hamster, and an out-of-commission finger. I'm feeling OK now, though, so if I can just figure out how to take a shower without getting my stitches wet, I'll get through this week.

CFIDS and School - Resources

We've had a rough few weeks here, with at least one of our boys home sick almost every single day. Craig had a couple of minor crashes or maybe viruses (hard to tell) and bounced back quickly, but Jamie, our 13-year old, has really struggled. He recovered from a bout of bronchitis last month, felt good for a few days, then went into a very severe crash that lasted almost two weeks. He's been back in school for the past week, but his stamina is still lower than normal. We cancelled a weekend trip to Connecticut for my niece's and nephew's birthdays this weekend to give him some time to recover.

I was reminded once again, during Jamie's 9 days absent from school in January, that you have to be an advocate for your child with CFS, in order to get them the support they need at school. I battled for over a week to get Jamie's teachers just to send work home. Jamie even has a 504 plan (an accommodation plan backed by federal law) in place, but this kind of lengthy crash has become so rare for him that his teachers weren't used to dealing with it. Most of them are very kind and supportive, so they probably thought they were doing him a favor by not giving him work when he's sick. As we've explained again and again, though, it's better for him to know what's going on and work on a little at a time as he's able to, than to return to school and be overwhelmed by weeks' worth of work.

At the same time, I've also been trying to help another local Mom whose 11-year old daughter has CFS to get what she needs at school. Her daughter's school has been supportive, but they just don't understand CFS that well. They want her to commit to a regular part-time schedule, attending school all day on Tuesdays and Thursdays. Anyone who lives with CFS knows that's pretty much impossible. We all wish we could plan our crash days and well days like that, but the one thing you can count on with CFIDS is its unpredictability.

For anyone else trying to get the right support for his/her child, here are some excellent resources:

The best book for parents is The Parent's Guide to CFIDS by Dr. Bell, co-authored by Mary Robinson (see next item). This book does a fabulous job of explaining 504 plans and IEP plans and advising parents on how to work with their child's school. It was invaluable to us when Jamie first got sick.

Another resource that helped us get through those first difficult years is the Pediatric Network. It's for parents of kids with CFS, fibromyalgia, and OI. The website includes lots of informative articles, but the Forum is what we found most helpful. It's a message board with sections for both parents and kids/teens (registration is free). The advice and support of other parents that we found through the forum made a huge difference to us. Mary Robinson, co-author of the above book, is also a moderator on the pediatric network.

The CFIDS Association has some excellent resources on its Youth Home Page. There are some great articles here. The first two articles on the Education page were especially helpful to us: Reach Out to School Nurses and Tips for Teachers of Young People with CFIDS. We've handed out many copies of both of these.

And to see more of my blog entries about our own experiences with CFS and school, just click on the school label at the end of this entry.

Jamie just got home from school and says he's feeling much better today, so let's hope this is the beginning of a trend!

A Doctor Who Gets It...Priceless

My 13-year old son is still very sick. We don't know what caused this crash, but it's been the most severe one he's had in a couple of years. He's missed 8 of the last 10 days of school. It's so hard to see your child suffer like this. On top of that, I'm having a terrible time getting his teachers to communicate with me about what work he's missing at school, even though they're supposed to send work home as part of his 504 Plan (an accommodation plan for kids with illnesses or disabilities). It's been very frustrating.

The one bright spot this week was a visit to see his pediatrician - his regular doctor, not the non-believer we were forced to see last week. How wonderful to have a doctor who not only believes in CFS but knows my sons very well and is always striving to learn more about CFS so she can help them.

Instead of the cursory check of ears, throat, and chest he got last week, Dr. Wonderful gave Jamie a thorough exam, asked in-depth questions, and reviewed his latest lab results and a recent visit to a specialist. She even gave him tips on how to lessen the effects of orthostatic intolerance while he's crashed, based on an article she's recently read. Wow. Even though she couldn't offer much immediate help (not much to do but wait it out), her acceptance, understanding, and support were a great comfort to us. She even asked how I've been feeling and how the anti-viral treatment is working. Most amazing of all, when we discussed Jamie's very low NK cell function in his last lab test, she admitted, "I really don't know much about NK cell function. How about if we find an immunologist at the local children's hospital who understands CFS and can help advise us on treatment?" Like I said, wow.

I've heard all the nightmare stories about doctors who are ignorant and dismissive of CFS - and I have run into some of them myself. I am so very grateful that my sons and I both have doctors who get it, who care about us, and are willing to learn more so they can help us. If you don't have a doctor like this yet, don't give up! I stumbled onto my own doctor by pure chance when I was searching for a diagnosis. There are good doctors out there, and it makes such a difference when you find one.

The Dark Side

After 28 days without a crash (28 days!!), I went down hard yesterday.This isn't one of those mysterious crashes; it was very predictable. I did a massive shopping trip to Target and Trader Joe's on Friday. I hadn't been there in a couple of months, and we were out of everything. I was on my feet for two hours, pushing overloaded carts through the stores and hefting big bags into the car and then into the house.

Even though I knew I would almost certainly crash, I was in good spirits when the telltale symptoms began on Friday night. This was expected, and I knew I have been unusually well this past month.

I felt truly horrible on Saturday and spent most of the day in bed. Then, sometime Saturday afternoon, the Dark Side took over. My usual sunny disposition deserted me, and I was overcome by feelings of despair and self-pity. Dark thoughts clouded my head: "Why me?", "I'm sick of my life being so difficult," "I hate living this way."

My kids, whose presence is usually comforting to me, were suddenly irritating to me. I yelled at them, adding Bad Mommy guilt to the cauldron of black emotions. I felt a desperate need to escape - from my life, from my family, from my own body.

Despite the fact that I know this kind of sudden depression is caused by a biochemical shift in brain hormones that often happens when I crash badly, it still has the power to completely overtake me when it hits.

I woke up this morning feeling a little better, emotionally if not physically, with the bright sunshine making last night's dark despair seem like a bad dream. I'm going to try very hard today to just rest and recover because I know that the Dark Side is still lurking, waiting for me to do too much and cross that invisible line again.

"Courage doesn't always roar.
Sometimes courage is the quiet voice at the end of the day saying,
I will try again tomorrow."

CFS in the Local News

We've gotten some nice local news coverage of CFS lately while the CDC & CFIDS Association's photo exhibit, Faces of CFS, has been in Philadelphia (about 30 minutes from where I live in Delaware).

Our own local Delaware newspaper kicked off the new year with a very good profile article on January 1st about a woman here who has CFS. It included mostly accurate facts (they messed up the name) from the CDC and from the CFIDS Association. The paper also printed my letter to the editor, thanking them for running the article and pointing out that CFS also affects kids and teens. (I waited too long to post this, so the article and letter are no longer online).

On Friday, January 11, NPR's Morning Edition ran a fairly good story about CFS on our local affiliate WHYY, including an interview with a local doctor who treats CFS. Again, mostly accurate, and it emphasized the seriousness of CFIDS (though they also got the name wrong, saying the D stood for deficiency). I tried to include a link, but it seems to have disappeared?

Here's another local radio program featuring CFS. I missed this one when it broadcast, but it's available online (page down to Special Features on the right side to listen).

A fellow CFIDS blogger was featured in a story about CFS on the local CBS news last week. Jennie did a great job in the piece.

At the same time, lots of major news outlets, including CBS News, have been covering the recent CDC study that showed women with CFS have low levels of cortisol. Good, solid science linked with CFS is always helpful in educating the public.

All of this news coverage has been great! We really seem to be entering a new era of taking CFS seriously. Misguided doctors and other people can't ignore all of these news stories. More, more!

Doing My Part!

I got to set a CFS non-believer doctor straight this week, and I'm so proud!

My older son had bronchitis, so I had to take him to the doctor to get a prescription for antibiotics. There are 3 doctors in the pediatrician practice we go to. Our regular doc is fabulous and has learned a lot about CFS in order to help our two sons, but when you go for a sick visit, you just get whoever is available.

The doctor who came in the room happened to be one who I know doesn't get CFS. Another Mom I know (whose daughter has CFS) took her to see this doctor while trying to find a diagnosis. Mom said, "Do you think this might be Chronic Fatigue Syndrome?" and Dr. Non-believer brushed her off with, "Who isn't tired these days?" ouch.

So, I just happened to mention while Dr. Non-believer was examining my son that he has CFS which makes him extra-susceptible to bacterial infections. At first, she just gave me a non-committal, " uh-huh," but a few minutes later, she looked at me and said, "What you just said about CFS...has that been documented?" I saw my chance for a little education and jumped at it. I said yes and explained that CFS causes immune system dysfunction, including an imbalance of T-helper cells that makes the immune system under-react to bacterial infections. I added that most people with CFS also have low Natural Killer (NK) Cell function, and that Jamie's was recently measured and is very low.

I'm hoping that those few little facts will help her to think twice about dismissing CFS as "just feeling tired" and maybe even seek out recent information about it. Every little bit helps!

Treatment Update

Hello, I'm here!

Sorry I fell into a black hole for awhile. With my grandfather's funeral, the holidays, and a severe crash that lasted for three weeks, I barely had the time and energy to get through each day for awhile. But I'm happy to say that with the new year came a new run of good health, and I've been doing well the past two weeks.

As always, it's hard to keep an accurate perception of things while in the midst of a crash. During the holidays, I was feeling pretty down, certain that none of the effort or expense of treatments this past year has had any effect at all. Lab tests taken in December showed little change, and my doctor in NYC sent me the results with a note that said, "About the same. Continue treatment." I was pretty bummed.

Once I started to feel better, I decided to take a more analytical approach (watch out, here's the engineer in me coming through again). I track how I feel each day and the amount of exertion and stress I had. I just use simple number ratings, from 1 to 5, that I jot in my journal at the end of the day (and, yes, I graph them!). So I let the numbers tell the story.

It turns out that, although I had some really great months this past year, the overall average was about the same as it has been for the past 6 years. That was kind of depressing, so I decided to look at my level of exertion. That graph went steadily up from January through the end of the year. I had a couple of bad crash months when I wasn't able to do a lot, but overall, I am able to be more active on most days than I was a year ago. This is exciting!

I also noticed that I did especially well during the three months that I took Naltrexone (which is supposed to help increase Natural Killer (NK) cell function). So I asked my doctor if I could try that again, and she agreed. She said many of her patients feel better on Naltrexone, even if the lab results don't show it. It might have been coincidental, but I'll try it again and see.

So, here's the basic summary of my treatments this past year:

• I took a low dose of Valcyte for two months (Jan - Feb) but quit it because my white blood cell count dropped so low.
• I took Valtrex (sometimes 500 mg per day and sometimes 1000 mg) for 9 months and am still on it (downsides include the expense and sometimes GI problems).
• I took Naltrexone (3 mg per day) for 3 months (Aug - Oct) and felt pretty well, so I'm going to try another 3 months of it.
• The results? I still feel about the same on average, but I'm able to be more active. That means that I'm functioning at a higher level than a year ago. I guess I feel about the same because as I've improved I've automatically increased my activity level.

So, I'm quite optimistic about the new year. I'll let you know how the second round of Naltrexone goes, and I'll try to get back into the blogging habit.

Now, I'm heading outside to throw a football with my son.