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.

CFS and Family

We're back home after a very successful 5-day trip back home to Rochester for Thanksgiving. We have a lot of extended family there, plus many of my old friends, so our visits are usually hectic and packed full. This trip was no exception, but I fared much better than usual. Of course, I had to be careful of what I ate, how much time I spent on my feet, and I stuck to my afternoon nap routine...but I made it through the whole trip without a single day of feeling bad and actually enjoyed myself! Our boys were very active, running around with their cousins all weekend, but they, too, made it through without crashing.

This was our third trip to Rochester (a 7-8 hour drive) in the past month. We went in mid-October to visit my grandfather in the hospital. He died while we were there, and we returned a few days later for the funeral. So, it's been a very challenging and tiring time for all of us.

I was pleasantly surprised, though, to find that some of my family members have finally begun to accept my illness. Although a few family members have been supportive right from the start, many of my family have responded for the past five years by just pretending that nothing was wrong. This has been deeply hurtful - to discover that the people I love the most weren't there for me when I needed them most. It has also made it difficult for me to spend time with my family because they wouldn't acknowledge my limitations or the changes I've had to make in my life.

All of this came to a head on a family vacation several years ago when I went into the worst crash I've ever had and found that no one would help me. They all just acted like everything was OK, even when I collapsed on the floor at one point. Though I was very hurt, I eventually came to realize that they were acting out of a deep sense of denial. My family does love me. It's just that some of them love me so much that they could not accept that I was now so debilitated. Perhaps the common misunderstandings of CFS played a role as well. This was a very difficult realization for me because my own attitude has always been to face things head on, learn as much as possible, and deal with everything in an upfront way.

So, after these many difficult years, I was pleasantly surprised to find some amazing changes during my recent visit to see my grandfather in the hospital. My uncle - one of those who previously pretended nothing was wrong - kept checking to see if I was OK, encouraging me to rest, and offering to help out so I wouldn't overdo. This meant so much to me. It's likely that my mother had something to do with this, since she also experienced a big turn-around in attitude in the past year, but whatever the reason, I was relieved to be able to just relax and be myself again.

I still have a couple of family members who rarely acknowledge my illness and tend to make light of its effects, but they're now the exceptions. A few years ago, I was at the point where I dreaded any family gatherings. I'm happy to say that I am now able to look forward to seeing my family again, and I truly enjoyed this hectic holiday weekend.

Crash!

Whew, it's been a long dry spell for my blog. I've been sick for the past week and a half. I guess I picked up whatever my oldest son had Halloween week. I was badly crashed for about a week. My crashes lately only last a day or two, so this one seemed to be triggered by a virus - that always knocks me out.

I felt much better on Sunday, then much worse again by Monday afternoon. That usually means a bacterial infection, and, sure enough, my doctor said I had bronchitis and started me on antibiotics. She said there's been a really nasty form of bronchitis going around lately, so she was worried about me. Fortunately, though, the antibiotics seem to be doing the trick.

I was well enough by today to even go on a much-delayed shopping trip to Target and Trader Joe's with my friend. She and I were both thrilled that I was able to manage it! Everyone needs a friend like her. When I was unable to go along to dinner and our book group earlier this week, she told me it wouldn't be the same without me. I was pretty bummed to miss my book group and appreciated her kind thoughts.

So, I'm glad to be back to my own kind of normal. It was so frustrating to be unable to do anything at all for days at a time. And now the holiday season is approaching fast!

Happy Halloween!

We've had an exhausting, whirlwind of unexpected activity these past two weeks, due to some family emergencies (more on that another time). Jamie had bronchitis earlier this week, but, by some miracle, we were all well enough to enjoy Halloween on Wednesday. It's one of our favorite days all year!

As is our tradition, we all dressed up - why should the kids have all the fun? This year, our younger son, Craig, wanted to be Elvis. He's a big Elvis fan and insisted we visit Graceland this summer when we went through Memphis. Craig wanted to be the younger Elvis, in the black leather outfit he wore for his comeback concert after his stint in the army. So, my husband, Ken, decided to be the older, Vegas-style Elvis. Here's big and little Elvis posing together before trick-or-treating. I dressed up as an Elvis fan from the 50's. Jamie and his friend decided to go as old-time Arabian knights (we watched Lawrence of Arabia recently!).

I was worried about Jamie, but he handled the evening well. Both boys even made it to school the next day. I went along trick-or-treating for the entire neighborhood with Ken and the boys for the first time in many years...and paid for it the next day. I felt like I had run a marathon, with sore muscles and plenty of aches and exhaustion. I bounced back quickly, though, and felt very good today. Amazing! I think that's one of the effects of the Valtrex treatment. I still crash, but my crashes tend to be much shorter lately.

I hope everyone else enjoyed Halloween as much as we did!

Support CFS Research

I just wanted to take a moment to tell you about a very easy and inexpensive way to support CFS research. I'm sure many of you are in the same boat as my family - we want to contribute as much as we can to CFS research, but our income is limited (since I can only work part-time), and our medical expenses keep growing.

There's a website called iGive.com. It's basically an internet shopping portal. You sign up - for free - and select which charity you want to help (I choose the CFIDS Association of America). Then visit the site first whenever you do any online shopping. You connect to the online store of your choice through iGive. There are hundreds of stores, including Lands' End, iTunes, Staples, Toys R Us - just about any online store you can think of. Each store contributes some percentage of your purchase to your charity (usually between 1% - 5%).

I signed up a few years ago but kept forgetting to use it. I recently added it to my Toolbar as a reminder and have gotten into the habit of going there first now. This is especially convenient for those of us living with CFS, since we often don't have the energy for walking through stores anyway. iGive also alerts you to special deals from merchants, like free shipping or coupons.

So sign up today, and tell your friends and family about it, too!

CFS In The News

While it's good to see CFS showing up more often in the mainstream media, it's also disheartening to see silly-sounding, over-simplified reports of miracle cures, like the one circulating this week about dark chocolate and CFS.

Hey, I'm always thrilled to hear any news about dark chocolate being good for me, but this USA Today blurb trivializes CFIDS and makes it sound like we can solve all of our problems with a few squares of chocolate. The BBC did a better job of covering the full story and emphasizing the seriousness of CFS/ME. The UK's ME Association provides a more complete explanation of the study results.

Fortunately, the news a couple of weeks ago about the link between CFS and enteroviruses received much broader and more complete media coverage. I subscribe to Yahoo's clipping service and saw dozens of news articles from tv, radio, and newspapers from across the country. This kind of report of hard science linking CFS to known viruses is the stuff that will help the medical community and the general public to better understand and respect CFS as the serious illness that it is.

Keep 'em coming!

In the meantime, it can't hurt to continue my nightly ritual of mint tea and dark chocolate.

Recovering

It's been a very long week. I've spent much of the past 9 days in bed, but I seem to finally be coming out of it. I'm still not sure how much of this has been a virus and how much has been a reaction to the Valtrex, but this was certainly no ordinary crash.

I've had heavy congestion in addition to my normal crash symptoms, so I suspect I caught one of the viruses that's been going around among my son's friends. In fact, my son is home sick today - congested and totally worn out - so he's probably got the same thing now.

You would think that being on a strong anti-viral would protect me against viruses, but I guess it doesn't work that way! From what I understand, anti-virals are very specific (as opposed to some of the broad spectrum antibiotics). Being on anti-virals can also make you more susceptible to bacterial infections. I started on Zithromax yesterday for what seems to be a sinus infection, after my congestion got worse again.

The worst part about this latest crash was a severe bout of depression this weekend. It was obvious to me that it was a biochemical shift - it happened so suddenly and for no apparent reason. In fact, I was feeling a bit better physically when it hit me. Suddenly I was turning trivial things into terrible tragedies, seeing problems where none existed, and sobbing uncontrollably. Others on Valtrex and Valcyte have described this same sort of sudden, severe mood swings. Knowing what's causing it doesn't make it much easier to deal with - for either me or my husband. We were both relieved when it passed.

I'm determined to recover by tomorrow so that I can attend an annual board meeting. It's a once a year thing that amounts to about 1/6 of my annual income, so I don't want to miss it! Fortunately, it's just a short train ride to New Jersey for me and a half-day meeting. I'm feeling much better today, so I think I'll be able to make it tomorrow. Now I just hope my son gets through this quicker than I did.

Surrender

I've been badly crashed since Monday evening this week. Maybe it's because I was too active this weekend or stayed too long at a festival with my family Saturday night. Maybe it's a response to finally getting back to my full dose of Valtrex (insurance mess finally resolved). Maybe it's because my sons' best friend has a cold and his virus is affecting me.

It doesn't really matter why, I guess. The fact is that this is a full-out, can't-ignore-it crash. I knew Monday night when my throat hurt so horribly and I felt achy all over.

It took me several years to learn this lesson, but I know when my symptoms get this bad that I have to give up, give in, and surrender completely. I've spent the past two days almost entirely in bed, rather than trying to get a few things done, as I might with milder symptoms. I've learned the hard way that if I keep pushing when it's this bad, it will only last longer and get worse.

There's no way out of a severe crash except through it. Back to the couch...

Kids and CFS: Update

It's been a long time since I've written here about my two boys and their CFS. We have two sons, ages 9 and 13, who've both had CFS for several years now (if you want to read more about their history, diagnoses, and treatment, click on the "kids and CFIDS" label at the end of this blog to see all of my blogs about them).

Overall, both boys are doing quite well now. We're enormously grateful to Dr. Bell, Dr. Rowe, and our own pediatrician for their help over the past few years. Both of our boys had dramatic improvements with Florinef treatment for their Orthostatic Intolerance (OI). If you have a child or teen with CFS, you must learn about OI (thought to affect over 90% of people with CFS); many kids respond very well to treatment, as our boys have done.

Jamie (our 13-year old) has just bounced back from a pretty severe 3-day crash. No big surprise - we let him go away for the weekend with his friend's family - three of his closest friends in the pool and the ocean for two full days. A crash was almost certain, but sometimes you just have to go ahead and let them have fun and suffer the consequences. I asked him last night, while he was still feeling terrible, if he would do it all again, knowing how bad he'd crash. He grinned widely and said, "Definitely. It was awesome!"

Jamie still seems to be suffering from the effects of his Lyme infection in April. The infection triggered a slight worsening of his CFS symptoms, mainly reduced stamina. Lyme is a known trigger for CFS, so this isn't surprising. Just to be on the safe side, his pediatrician and a specialist are examining and testing him to be sure there's nothing else going on. Overall, though, he's doing well, still able to be in school full-time, in band, and even playing soccer. What a change from two years ago, when he was bed-ridden almost 50% of the time!

Craig, our 9-year old, started Florinef in April, with the same dramatic improvement we saw with Jamie previously. Craig was home sick this Monday, after an exertion-filled weekend of soccer, swimming, and golf, but by Tuesday morning he was feeling better and back to school. That was his first crash day since April - amazing! Craig also had adenoid surgery this summer because he struggles with chronic sinus infections. This is his bad allergy season, and he's been congested the past few weeks, but so far, no sinus infections.

So, we're still dealing with occasional crashes and school absences, but compared to years past, life is good.

Back to School

My two boys returned to school on Monday. This is both good and bad for me. Of course, I enjoy their company, and we did a lot of fun things this summer. And after only three days, the early mornings are already killing me! Soon, our evenings will be filled with soccer practice and hours of homework. I do enjoy those relaxed summer evenings.

On the other hand, I am enjoying my very quiet house! I really didn't do much writing at all this summer, so I'm looking forward to getting back to my working routines. So far this week, it's mostly just clearing off my desk, going through my e-mail, and trying to sort through the stacks of back-to-school paperwork.

I've been feeling very good this past week. I was even able to enjoy a day hiking at a local creek with my friend and our kids on Friday. It's so hard to figure out why I'm feeling good, though. As I mentioned last week, a mix-up with my insurance company forced me to cut back to just one Valtrex per day temporarily. Is that why I'm feeling good? If so, what's going to happen when I go back to the full dose of two Valtrex per day? Do I need the higher dose to prevent drug resistant viruses? Or maybe the timing is just coincidental, and I've reached the end of my "herx" reaction (a temporary worsening) and can expect to keep improving?

There's another option, too. About 3 weeks ago, I started Naltrexone, a medication that's supposed to boost my Natural Killer (NK) cell function. Maybe that's starting to work.

So many questions and so few answers! All of this is so new to everyone, including the doctors. I guess I just need to wait and see. Hopefully, my higher stamina will continue.

Insurance Woes

I've gotten so far behind on blogging lately! It's the busy season for me, summer, with my kids home from school. We return to our normal routine next week when school starts, and then I'll have more time to write.

The past few weeks have been filled with one health insurance mess after another, mostly to do with our prescription drug coverage, which seems to shrink daily. It's so frustrating!

First, I stopped by the drugstore to pick up one of my allergy medications. It's a generic 12-hour decongestant/guaifenesin combination that I've taken every day for the past 8 years or so. The pharmacy clerk told me my insurance had stopped covering this medication, and it would cost me $100 (with insurance, it's $20). The insurance company never contacted me to let me know our coverage had changed. Phone calls got me nowhere - they couldn't tell me why it was no longer covered or what I could get as an alternative.

To make matters worse, it turned out that they are no longer covering any medications in this class. Both my younger son and I take two different varieties of this medication to help control our allergy and sinus symptoms. Since starting on these, my sinus headaches have almost completely disappeared, and Craig made it through last spring without a single sinus infection.

Then, weeks after sending my new Valtrex prescription to our mail-order pharmacy, I received a letter in return that they couldn't fill it because it was "beyond my limit." I guess they had a problem with the higher dose? Who knows. Anyway, I was in a panic, so I e-mailed Dr. Levine and begged her to call the insurance company and plead my case. She was understandably reluctant to get involved in a long battle, but she finally agreed to give it a try. After multiple phone calls and faxes, Medco finally agreed to fill the new prescription, but said they could not send it to me until August 30. No idea why? So, I had to cut back to just one Valtrex a day to make them last until the end of the month.

Meanwhile, I'm struggling to find a new, low-cost way to get the decongestants for Craig and I. I guess we'll have to pay for them out of pocket, so I'm looking for the lowest prices. So far, drugstore.com seems to be the best option. I'd appreciate any recommendations from other people who have to pay for their own medications. As frustrated and fed-up as I am with our prescription insurance, I also have a new appreciation for people who don't have any insurance at all. I can't imagine how difficult that must be. Any advice on low-cost prescriptions is welcome!

CFS and Valcyte

Over the past few months, I've received dozens of e-mails from all over the world, asking me about Valcyte. I've gotten the impression that most of these people have read just one of my old blog entries, from this winter when I briefly tried Valcyte. I was curious about this onslaught of questions, so I tried typing "CFS" and "Valcyte" into Yahoo and guess what? One of my blog entries from March was the very first search result! I'm certainly no expert on Valcyte with my limited experience, so I thought it was time to supply some updated information and references. Let's hope this entry takes the place of that old one in the search engines!

For starters, CFS has long been thought to have some connection with a handful of viruses. Research in the past few years has proven this connection. It has been confirmed now that about 12% of the population that catches certain infections goes on to develop CFS. Mononucleosis (often caused by the Epstein-Barr virus and known sometimes as glandular fever) and Lyme disease are two of these infections known to trigger CFS. Additional research has shown that some of us are genetically predisposed to develop CFS (lucky us).

Dr. Bell has an excellent article that summarizes the CFS viral connection.

More recently, the entire CFS community was astounded by the results of a study using Valcyte to treat CFS. Dr. Jose Montoya of Stanford University treated 25 of his worst CFS patients with Valcyte and, amazingly, 23 of them improved significantly (it even sounds like some of them are almost completely recovered). Dr. Montoya is now conducting a full placebo-controlled trial of Valcyte for another 100 CFS patients. Some important facts to note about these studies:

• Patients who improved had abrupt-onset CFS and had significantly high levels of Epstein-Barr virus (EBV) and Human Herpes Virus-6 (HHV-6) in their blood.
• Most, if not all, patients who improved first experienced a severe worsening of their symptoms that lasted from a few weeks to many months.
• CFS patients were treated with Valcyte for a minimum of 6 months, some for much longer.
• Valcyte is a fairly toxic medication, with some serious risks associated with it.

In addition to Valcyte, there are several other anti-viral medications (some with fewer risks than Valcyte) that have had some success in CFS patients, depending on which viruses are present. Famvir and Valtrex are two of these medications.

Here are some references for more information:

Dr. Podell, in Somerset, NJ, is also treating CFS patients with Valcyte. He's written an excellent summary of CFS and Valcyte, including many links to additional resources as well as links to Dr. Montoya's information.

Dr. Martin Lerner, in Michigan, has been treating CFS patients with a variety of anti-viral medications, including Valcyte, Valtrex, and Famvir, for several years. His website includes detailed information on his trials and treatments.

The HHV-6 Foundation has some excellent information on HHV-6 infection in CFS.

There is more good information at the website for Viral Induced CNS Dysfunction, including an excellent description about testing for EBV and HHV-6.

The CFS Phoenix Newsletter, a wonderful resource for keeping up-to-date on the latest in CFS research, has a detailed article on the role of HHV-6 in CFS.

Finally, if you want to hear about other people's experiences with Valcyte and other anti-virals, check out the message boards at ProHealth Immune Support. Registration is free, and there are many message threads on these topics. Just click on Message Boards and take a moment to register.

I hope that these references help those of you interested in learning more about treating CFS with anti-virals like Valcyte. These are the websites that I've turned to in the past 6 months. As for myself, I'll continue to write here at my blog about my own experiences with Valtrex.

Update on my anti-viral treatment

Sorry to be so silent lately. I've been very, very sick. I've probably spent less than 15 minutes total on the computer in the past week, just to quickly check for urgent e-mails. My current rough state might be good news, though.

Two weeks ago, I had a follow-up phone consultation with Dr. Levine. In case you're new to my blog, she's the doctor who tested me for various viruses and for immune system function back in March. She found that I had higher than normal levels of HHV-6 (though my EBV and CMV levels were normal), and we decided I would try Valtrex, an anti-viral medication that works against HHV-6 but is much less toxic than Valcyte (which is effective against both HHV-6 and EBV).

So, I've been taking a low dose (500 mg/day) of Valtrex for the past four months. I have had some mild improvements during that time. The improvement has been subtle, difficult to notice on a day-to-day basis, but slow and steady when I look back at my records (I note how I feel each day, on a 1 to 5 scale, on a calendar). Also, both my husband and my mother commented to me recently that I seemed "more like myself" lately.

When I spoke to the doctor two weeks ago, we decided that I would try increasing the dose since the Valtrex seems to be working and I'm tolerating it OK. So, I doubled the dose to 1000 mg/day. Ever since then, I've had severe CFS symptoms almost constantly - sore throat, aches, exhaustion, sleep dysfunction - all my "normal" symptoms but as bad as my worst days every day with very low stamina. I've spent most of the past week in bed or on the couch (thankfully, my kids have been with their grandparents this week).

The good news (I hope) is that this characteristic worsening of symptoms on an anti-viral medication is supposed to be a good sign. Everyone who's taken Valcyte for CFS has reported the same sort of initial reaction. The theory is that this is a "herx" reaction, a temporary worsening caused by the drug killing off lots of virus in cells and tissues that then floods the bloodstream, triggering the typical CFS over-reaction of the immune system.

Despite my incapacitation, my spirits have been good. I'm hoping that this means that the drug is working for me and that I'll experience some improvement once I get past this stage. I'm sure things will get much more difficult for me tomorrow, when my kids return home. I love them and miss them, but I've really needed this complete quiet and peace this week.

I'll try to keep you posted on my progress and plan to post some general information on viruses, anti-virals, and CFS tomorrow. That's more than enough for today!

I'm Not As Well As I Look

We finally got our internet connection fixed! Now I can start working through all those e-mails from vacation.

It's been a very rough week. Once again (will I never learn??), I had commited to much more than I could handle.

For starters, I did too much yard work last weekend, in a desperate effort to make our entrance presentable for my neighbors who would be coming over this week for our book group discussion. Our yard is like a jungle right now, and almost all of our neighbors have professional landscapers. I just wanted to clear out the weeds along our front walk and maybe plant a few flowers. I spent several hours Saturday (with breaks!) weeding, trying to do most of it while sitting. I woke up Sunday morning and couldn't bend over without excruciating pain. I guess it's a muscle spasm in my back. I spent all day on the heating pad and am still in a fair amount of pain several days later.

Monday, I was scheduled to teach a training course in the morning, as part of some consulting work. I hadn't done any teaching since getting CFIDS, but I thought I could handle a half-day. The combination of the back pain and being on my feet for several hours left me severely crashed by Monday evening. Thank goodness my client asked to postpone Tuesday's work.

I was supposed to host my book group on Wednesday evening (see what I mean about committing to too much?). By Wednesday, I was still badly crashed with aches, sore throat, the works. I had to cancel at the last-minute. I was both embarrassed and relieved when I finally sent the e-mail to my neighbors to cancel. A couple of them responded very compassionately, assuring me not to worry and offering to host instead. The rest were just silent.

I feel as though I've come out of the closet, like my condition has been revealed. I think they all knew I have a chronic illness, but I doubt any of them know how debilitated I am. Who could possibly understand CFIDS without living with it? In my e-mail, I admitted that I shouldn't have offered to host in the first place, that it was more than I could typically handle. I knew that when I volunteered, but I wanted to do my part. Besides, I was embarrassed to be a part of the group without taking my turn like everyone else.

How can you possibly convey to people how debilitating "normal", everyday activities are for someone with CFIDS? I feel as if we live in our own little world here in our house. None of our neighbors could possibly imagine what it's like here. I worry that people look at our weed-filled yard and messy house and just think we're lazy. But you can't go around telling everyone how sick you are. It would make them and me feel uncomfortable, and I really don't want to be pitied, just understood. Sometimes I wish I could wear a sign around my neck that would explain exactly what CFIDs is and what my life is like, something that would provide instant understanding. Or maybe just something like, "I'm not as well as I look."

Ah, well. Life goes on, right? Maybe this week's events, while embarrassing and disappointing, will help my neighbors to understand just a little better. I'm feeling a little better today, continuing my slow recovery out of this latest crash.