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.

Back Home

We returned home from vacation earlier this week. We had a good trip and especially enjoyed our journey out to Oklahoma, with some wonderful stops along the way. Our time in Oklahoma was a bit more stressful than we had planned. We found my husband's parents in worse shape than we had realized and spent our time there helping them to get back on their feet - doctors' visits, shopping, cooking, etc. In fact, my husband flew back out there yesterday for his mom's back surgery. She broke a vertebra in a recent fall and has been in constant pain, so we're hoping this procedure will help her.

So, we're back home, but life has not yet returned to "normal" (whatever that is!). I have two half-days of consulting work next week, so I'm trying to save up some energy for that, while I work to unpack, clean up, and take care of the kids. Both boys are doing well - thank goodness for Florinef! They're taking full advantage of summer, running around with friends, completely carefree. I am so grateful that OI treatment has worked so well for them, to allow them to play like normal kids. In fact, Craig has been insisting that he no longer has CFIDS; since starting Florinef this spring, his stamina has been incredible.

I have over 200 e-mail messages and am having trouble with my internet connection, so please be patient if you've send me an e-mail. I'm way behind and probably won't catch up until I get past that consulting work next week. I need to help pay for our vacation!

I'll try to post more information and an update on my anti-viral treatment soon (not much new to report, though). Hope everyone is enjoying a nice summer.

In Vacation Mode

We're enjoying our vacation so far. We were quite active for the first part of our trip, and I was surprised and delighted to get through it without any crashes! I have really pushed my physical stamina at times on this trip - hiking, canoeing - and I've handled it surprisingly well. I would love to think that my exercise intolerance is lessening, but it could also be that there's simply much less stress on vacation.

I've had two instances of feeling poorly. It was my 9-year old son's most fervent wish to visit Graceland when we were in Memphis (he loves Elvis!). Both of the boys and I felt bad by the end of our 3-hour visit. That museum-type pace is the worst for Orthostatic Intolerance. Visiting museums is something I really miss. I recovered quickly, though.

The second problem occurred during our very ambitious canoe camping excursion along the Buffalo River in the Ozarks region of Arkansas. My husband and I used to love canoe camping, and we've wanted to share that with our kids for a long time. I thought I could handle it OK since the river has a nice current that keeps you moving along, but I had forgotten how much work it takes to steer. By late afternoon (always my low time of day) on our first day, I just sort of lost it - got really frustrated, yelled at the kids, made everyone mad at me. I finally realized I was pushing myself too hard physically and was also hungry. Low blood sugar can turn me into a different person. We stopped to rest, cooled off in the river, and had a snack. I improved after that and handled the rest of the trip very well. In fact, I fully expected to crash the next day, after two days of paddling for 3 hours each day, but I didn't. I actually felt very good the next day! Amazing. After that first episode, I tried to take lots of breaks, eat lots of snacks, and stay cool with frequent swim breaks. I guess it worked. We all had a wonderful time.

I'm finding that I feel quite well as long as I can stick to my typical routine - get to bed before 10 pm, take a nap in the afternoon, and have frequent meals to keep the blood sugar steady.

We'll be heading back home soon, so I should be able to blog more regularly again - after we get unpacked!

Busy, busy!

I haven't had much time for blogging in the flurry of activity lately. I had two major consulting assignments to finish. Fortunately, it was work I could do from home, on my laptop, but it was still time-consuming, especially when done in little hour or two-hour increments.

My boys both finished school last week, with all of the last-minute activities associated with that (two picnics, two awards ceremonies, etc.) That's all behind us now for the next two months, along with homework, tests, and school functions - hurray!

Jamie and I both crashed last week. We both had nausea and knee pain, in addition to our usual symptoms, so we were probably exposed to a virus of some sort. he managed OK, but I was in really bad shape on Friday, so we had to cancel our annual start-of-summer excursion to a local creek with our best friends. Rough day, but I'm doing better now.

Now, we have a whole new flurry of activity going on! We're getting ready for our annual summer road trip to Oklahoma to visit family. We're all looking forward to it, but there's a lot to do to get ready. I probably won't have much time for writing for awhile, though I am taking my laptop along this time.

Hope everyone out there is feeling well enough to enjoy the start of summer!

Anti-Virals and Emotional Instability

After my blog last week about the sudden depression that caught me off guard, an acquaintance from the immune support message boards sent me an e-mail that made me feel a whole lot better. Here's part of what she said:

"Valtrex certainly can cause a die-off reaction! My doctor, who has treated more than 200 patients with antivirals, states that about 30% of his patients (admittedly a very sick group) get a significant die-off with Valtrex or Famvir.

I have been struggling with die-off symptoms on Famvir (a very similar drug to Valtrex) for seven months now. The ones I had at the beginning were every bit as bad as those experienced by many Valcyte patients. (This was especially surprising to me since my level of functioning prior to the drug was pretty high.....at least a notch or two above yours, based on what I've read in your blog.)

Note also that the biggest initial die-off reactions to antivirals tend to be in emotional lability. This was the case for me, I have noted it on the ProHealth board, and my doctor told me (after I'd already experienced it) that it was the case for many or most of his patients who got die-off as well.

My doctor told me when I was struggling with it that my suffering eventually would lead to improved mood in general. Those around me (my husband etc.) now state that my emotional state (in terms of positivity and resilience to stress) has indeed improved a lot since I started the drug, regardless of how I seem to be feeling physically or how well my cognitive abilities are doing. (A number of my other symptoms have improved now compared to where I started too, but only when I stop taking the drug for a day or two. The continued die-off from the drug seem to be covering up the improvements.)"

I found this extremely interesting. As I mentioned in a previous blog, I have sometimes felt lately that I was losing my mind - feeling fine one day and sobbing uncontrollably the next. It's so comforting to find out this is a normal reaction.

More on reactions to Valtrex in another blog. The system is about to shut down....

Taking It Slow

I'm doing much better emotionally and trying hard to recover physically. I have no idea what caused this crash (which is always frustrating to me), but fortunately, the depression only lasted a day.

Thank you for all the supportive comments. When I'm in my "normal", optimistic state of mind, I know logically what causes those sudden bouts of depression, but, somehow, when I'm in the midst of one, I have trouble seeing it logically. I really hate the feeling of having no control...but that's what CFIDS is all about, isn't it?

I have a huge amount of work to do, but I am trying very hard to focus on taking care of myself so I can recover from this crash sooner. I've spent much of the past two days in bed. Lunch with my friend helped tremendously yesterday, as did the flowers my husband brought home for me. I am trying to listen to my body. Instead of pushing myself to keep working through the crash, as is my normal inclination, I am trying hard to rest aggressively (I love the paradox of that expression!) and keep my stress levels low.

Time for another nap.

Depression & Obsession

Damn. I knew I shouldn't have announced how good I was feeling. I felt pretty yucky yesterday, getting worse and worse as the day wore on. I practically had to chain myself to my laptop to get a little work done because I was having so much trouble focusing on my current work project. In the afternoon and evening, the darkness began to creep into my mind and emotions. By 8:30 pm, I was feeling so depressed and forlorn that I went to bed early just so that the day would finally end.

But it didn't end. Despite the half-Ambien I took, sleep eluded me. My mind got caught in an obsessive cycle. This happens to me sometimes with a crash. It's worse than any physical pain or discomfort. My brain grabs hold of some tiny dark feeling and obsesses over it until it spirals out of control. In this state, anything can get me going - something my mom said on the phone, some real or imagined slight from my husband - and my mind grabs it like a dog with a chew toy until it seems to take over my whole being. I finally took the other half an Ambien and somehow got to sleep eventually.

Am I crazy? Am I losing my mind? That's how it feels. Yesterday morning, I was filled with peace and gratitude, enjoying the gorgeous weather and feeling satisfied with my life. Twelve hours later, I was a basket case, thinking that my life was falling apart. My husband came home from golfing at about 9 pm, and I pretended to be asleep just because I didn't want to subject him to my darkness. He loves to golf and always comes home on top of the world, and I didn't want to ruin his good mood or, even worse, take out my dark feelings on him.

What's wrong with me? I know, somewhere in the rational side of my mind, that all of this is a biochemical thing, the result of CFIDS-influenced hormonal shifts in my brain. This never happened to me before CFIDS and now it only accompanies other crash symptoms in a predictable pattern. Right? Oh, someone out there, please tell me this happens to you, too, so I'll know I'm not losing my mind.

OK. I'm going to try to help myself. I've made arrangements to meet my closest friend for lunch, so I can try to get out of the house and out of my own head for awhile. First, I'm going back to bed to try to get some more sleep. It's the only thing that will help me pull out of this hole.

Progress?

I know from all of your e-mails and comments that many people are waiting to hear how I'm doing on my new Valtrex treatment. I've been almost afraid to discuss it for fear of setting myself up to be disappointed (or jinxing myself, as my kids would say!)

I had about a month of feeling pretty crummy, but I hesitate to attribute that to Valtrex. It's not known to cause a "herx" reaction (i.e. an initial worsening due to virus die-off), plus I've had a very stressful month. I've had way too much going on with work, home, and family. My husband and I had a minor crisis which caused a significant amount of stress one week. We've also had trips to visit family and family staying with us - both enjoyable but tiring.

Than came last week, my fifth week on Valtrex. I felt really, really good all week long. In fact, I've now had about 8 days straight of feeling good, and I'm cautiously beginning to wonder if maybe this is a positive response to the anti-viral treatment.

The problem is, of course, that CFIDS is defined by unpredictable ups and downs, so it's always difficult to assess the efficacy of a new treatment. Also, I know that stress affects me quite severely, and last week was the first week in a long time when I didn't feel stressed. So, is it cause or effect? Am I feeling good simply because I'm less stressed or am I less stressed because I'm feeling better? See why I've been avoiding this train of thought??

Whatever the reason is, there's no denying how wonderful this past week has been. It's not only an improvement in my physical symptoms. This past week, I have experienced a clarity of thought and an enthusiasm that has been missing for a long time. It's subtle - something I didn't even realize was missing - feeling sharp and engaged. I'm having trouble putting it into words, but I just feel more like me, like the old me, the real me. It makes me wonder how much of the "emotional" effects of CFIDS (feeling down, lacking motivation, etc.) are really biochemical.

I've always said that I've been fortunate to have only very mild brain fog. Sure, I feel sluggish when I'm badly crashed, but otherwise my only indication of cogntitive dysfunction has been difficulty with word finding (a tough one for a writer!). I wonder now, though, whether my thinking has been more affected than I assumed. Many of the people on the immune support message boards taking Valcyte mentioned that the first improvement they noticed was in their cognitive function. Maybe these mysterious viruses affect us even more than we thought.

So, I'm still waiting and watching but feeling pretty optimistic. Now, don't get me wrong - I'm still napping every day, needing at least 9 hours of sleep a night, and feeling worse if I do too much - but any improvement is welcome.

I went for my week 5 lab tests today and will have a phone conference with Dr. Levine next week. I'll keep you posted!

Just Do It!

I've really been overwhelmed the past few weeks with all that's going on - family birthdays, writing deadlines, consulting work, and so many school functions! This time of year is always so hectic.

Today, I finally quit procrastinating - a favorite hobby of mine - and did my part for International CFIDS Awareness Day (which was May 12). Every year, I think I'll be able to participate in the CFIDS Association's Lobby Day, but it always falls at this busy time of year when I have no energy to spare. Fortunately, they've made it easy to help out, even for those with CFIDS who are unable to leave their homes.

Just use this link to go to the CFIDS Association's Grass Roots Action Center.

They currently have 5 different actions you can take from your computer. Each one sends letters to different political and media people to help raise awareness of CFIDS and support greater research funding. The CAA provides the letters; all you do is click a few buttons and add your name and address. You can also add a couple of your own sentences that describe how CFIDS has affected your life.

I just took all 5 actions, sent a bunch of letters, and it took less than 10 minutes! You only need to enter your information once, and you can write your couple of sentences once and just paste them into each letter.

It's FAST, it's very easy, and it really does make a difference.

There have been some remarkable advances in research in the past two years, but it won't go anywhere without additional support and funding. So, do your part. Go now....

Just do it!

I Think I Can...

Remember the Little Engine That Could? That story is a perfect illustration of the way that I was brought up. I have always believed that I could do anything I set my mind to, that anything was possible if I only worked hard enough. So, why can't I get well? This has been one of the hardest things for me to accept about being ill - that I don't have control over my body or my life in the way I thought I did.

If a strong will was all that it took to get well, I would have overcome this illness long ago. I want so much to be able to be active again - to exercise, lose weight, rebuild some muscle, have energy for my husband and family, even simply just to take a walk on a beautiful day without worrying about the consequences. I want all of this with every bit of my being, but that's not enough.

Besides a strong will, I've also worked hard to get well. I rest as much as I can, watch what I eat, try to reduce stress. I have no alcohol, no caffeine, no dairy. I limit my activities - social, mental, and physical. I read and research and try everything that sounds promising. But all this hard work doesn't do the trick either.

I do what I can and control what I'm able to. I'm certain all this effort hasn't been in vain. It's what's keeping me able to function as well as I do. I'm not bed-ridden, like so many other people with CFIDS. I still have much to be grateful for. It's just that, some days, I want more. I want wellness and health.

So, I keep trying.

I've been on Valtrex for a week and a half so far. I felt pretty rotten last week, but I was under a great amount of stress. I've had the gastrointestinal problems that Dr. Levine warned me about, but those seem to be easing a bit this week. I have to keep reminding myself that this is a long-term treatment (6 months) and not a cure, but I would so welcome even a little bit of improvement.

I think I can, I think I can....

Whirlwind Week

We've had another crazy, exhausting week here. I can't even seem to find time to write regularly!

Both of our boys ended up being out sick from school all last week. I was pushed to my limits trying to take care of them, worrying about them, and dealing with school issues. Craig had a virus that's been going around our area, with sore throat, cough, and losing your voice. He was horribly sick for about 6 days but, thankfully, bounced back by Monday in time to head back to school.

Jamie, our 12 year old, just wasn't recovering. At first, we thought it was "just" a CFIDS crash, but since Jamie's been on Florinef, his crashes have typically lasted only 2-3 days. We'd noticed some mild fatigue and brain fog for several weeks, and then the 8-day severe, can't-get-off-the-couch crash. When he started telling us his knees hurt horribly, the lightbulb went on in our minds. Pain has never been an issue with Jamie's CFIDS, and now his knees hurt so much that he couldn't get up the stairs or walk without severe pain.

In our area, sudden joint pain, fatigue, and brain fog usually mean one thing: Lyme disease. By Monday, we were convinced of it. Jamie's severe crash symptoms had improved, but he could barely walk and was still moderately brain fogged.

I took him to see his pediatrician Monday, and she did a thorough exam. Her first suggestion was to test for Lyme, and, if the test was negative, wait another 6 weeks and test again (the antibody test is often negative for the first 6 weeks of infection). I pushed hard to start antibiotics right away (after having the blood drawn) because of the very high risks of leaving Lyme untreated in someone with CFIDS. Lyme is one of the known infections that can trigger CFIDS to start or trigger a severe relapse. She understands CFIDs and has been very supportive all along, so she agreed.

Jamie started 30 days of doxycycline on Tuesday. Within 24 hours, his knee pain began to abate, and his brain fog lifted dramatically. Even though I was pretty certain he had Lyme, I was still stunned by the quick change. His natural sparkle was back!

Meanwhile, my husband's been out of town all week, and we've had an exhausting itinerary of doctor's appointments, soccer, and chorus rehearsal. Oh, and we were getting a new roof put on the house, so it sounded like elephants were crawling on our roof - tough to nap! Jamie and I spent over 2 hours at the eye doctor's on Tuesday (he needs glasses). Anyway, I'm totally worn out.

This experience just emphasizes - once again - that we have to be our own (and our children's) strong advocates, trust our instincts, and be aggressive in seeking answers when we know something isn't right. It's hard work, but we can't let ourselves get lost in the mainstream medical system.

News from Planet Jackson

It's been one of those weeks. Both boys have been home sick for four days now, and I've been pretty badly crashed most of the week as well (doing much better today). At times like this, our universe shrinks down to these four walls, trying to relieve symptoms, rest, and do a little homework.

I had perked up enough by last night to go to my neighborhood book group. Even though I was physically still a little run-down, getting out of the house and getting my mind off illness and school was a huge mental and emotional boost. I came home feeling tired but refreshed, and I feel much better today.

As I walked home from my neighbor's house last night, I felt like I was returning to my home planet after visiting an alien world. I thoroughly enjoyed the wonderful conversation of my book group, but when I'm in a group like that, I become aware of how different my life is from everyone around me.

I enjoy these brief immersions in the "normal" world. Book groups (I belong to two) are especially nice because I can discuss the book on an even level with everyone else. Reading is one of the few things I can do just like any other person. Toward the end of our meeting last night, though, the talk turned to other topics. The women around me talked about travel, home improvements and decorating, visits to museums, and other topics of their foreign world. I felt like a reporter from another planet, listening and observing an alien lifeform. I enjoyed the conversation, but there's always a part of me that feels different and separate.

Here I am today, back on my own planet, taking care of sick kids, e-mailing teachers, distributing clipboards and notebook paper to my prone children, and helping with homework. It's a different kind of normal, but it's ours and I'm grateful for what we have and the joys we're still able to experience.

Test Results and Next Steps

Finally! I spoke with Dr. Levine for a half hour today to review my blood test results and discuss treatment options.

My viral antibody tests were positive for HHV-6 and negative for CMV (unusual for someone with children she said). She couldn't find my Epstein-Barr Virus results while we were on the phone (though I've had EBV tested several times during the past 5 years with normal or borderline results).

Then she reviewed my immune system test results. My immunoglobulin IgG was low and my Natural Killer (NK) cell function was in the low-normal range. She said the lab listed "normal" as 3 and up; my NK function was 17. She said a healthy person should have a NK function in the 50-60 range, so she'd like to bring mine up a bit. I suspect that some of my past efforts to improve my immune system function have helped to keep my results from being too low.

Next, we discussed treatments. At first, she assumed I'd go back on Valcyte, since I'd been on it before and had asked about it during my visit. However, I've been feeling a bit nervous about the side effects and potential risks of Valcyte, so I asked Dr. Levine a lot of questions about risks and benefits.

She said she hasn't seen the same kind of dramatic results that Dr. Montoya at Stanford reported from his initial studies (she's talked to him extensively about his studies and her patients on Valcyte). Some of the reports I've read have emphasized that Dr. Montoya's Valcyte patients all had very high levels of HHV-6 and EBV in their blood. Dr. Levine said she currently has 7 CFS patients on Valcyte and none has experienced lasting improvements. One improved initially but then felt worse again (typical unpredictable CFS, right?), and another recently quit taking Valcyte. In addition, she confirmed the significant risks of Valcyte that my own doctor and I had discussed previously. It definitely affects bone marrow and may have a theoretical increased cancer risk (hard to say, since there's not enough data on CFS patients yet).

Finally, she suggested we keep Valcyte on hold as a second-line treatment to try later if other treatments don't work. Instead, she suggested a three-part approach for me, adding a new treatment on each month if I seem to tolerate them well:

1. Valtrex, probably for 6 months. Valtrex is another anti-viral, well-known for its use against more common types of herpes virus. It has no side effects and none of the serious risks of Valcyte and is far less expensive than Valcyte.
2. After 4-6 weeks, add a tiny dose of naltrexone to boost NK cell function.
3. If those are well-tolerated after another month, add weekly injections of gammaglobulin to help increase immunoglobulin.

It's a two-pronged approach to eliminate HHV-6 while also helping to improve immune system function so that I might be better able to fight off infections on my own. Dr. Levine emphasized that this isn't a cure, but she's had patients improve somewhat, to "a new plateau level," as she put it. I said I'd welcome any level of improvement.

What does this all mean for me? I think I'm relieved to have other options. I was getting really nervous about Valcyte, especially at such high doses and in the absence of very high blood levels of HHV-6 and EBV. I was also starting to feel stressed looking at the calendar and wondering how I'd handle two months of getting much worse (as often happens initially on Valcyte). I like the plan to try something milder first. At the same time, I've had to admit to myself a bit of disappointment that there's no miracle cure (yet!). The initial news of those 22 patients who improved dramatically on Valcyte was (and still is) pretty exciting, and I may have gotten my hopes up.

I think all of this emphasizes what many CFS experts have been saying for years - that there are likely subsets of CFS, initiated by different triggers and probably responsive to different treatments. I still feel very, very optimistic about the terrific progress in CFS research in the past few years; Valcyte is likely just one of several breakthroughs we'll hear about in the near future.

I'm glad that I went to see Dr. Levine. Being someone who likes to deal with hard data and scientific fact, I am thrilled to have some real information on what's going on in my body, even if the picture is not yet complete. There is nothing more frustrating in the early days of CFS than all of those lab tests that show everything is "normal" while you keep suffering. I think I'll take my boys up to see Dr. Levine during the summer to see what their blood tests show.

Whew, that's enough for today. I've been in a fairly bad crash the past two days. I'll let you know how things go with this new treatment plan.

Still Here!

Yes, I'm still here. The past two weeks have been a whirlwind of activity here. I traveled to NYC for my appointment with Dr. Levine (more on that in a moment). We went to Maryland for a wonderful, relaxing camping weekend with friends. It was so low stress that I actually managed a 2-hour hike with everyone and still felt good the next day! I was amazed and wondered if that burst of stamina was the result of my brief Valcyte trial...but the past week brought me back to reality.

My boys had their Spring Break last week, so we had a few days at home between trips and then drove 8 hours to visit my family in Rochester for Easter. It was wonderful to see my family, but the trip completely exhausted me. I sleep so poorly when I travel, despite all my various medications that work so well at home (unless we're camping; I do OK in our camper). I was a mess today and spent most of the day in bed, but now I'm beginning to perk up a bit. Can you see why I haven't had time to write?

There isn't much to report yet on my visit to Dr. Levine because I'm waiting for her to call me. I gave her a brief recap of my illness and told her about my aborted trial with Valcyte. She said I could try Valcyte again, this time at the full dosage being used in the Stanford studies. Then she took a LOT of blood to run tests for various viruses as well a a full immune system panel. I was excited about this because I've wanted the immune system panel for awhile now, but my own doctor said she wouldn't know what to do with the results.

So, I'm still waiting for Dr. Levine to call back with the results of my blood tests. She said she might end up trying some other anti-virals or additional medications based on the results. I have a list of questions for her when she calls. I want to make sure I fully understand the risks involved before taking the high doses of Valcyte. At the same time, after this exhausting weekend, I'm eager to try something - anything that might offer some hope. I'm really sick of being sick.

I was catching up on e-mails this morning and saw more useless CFS studies. I'm so fed up with seeing precious research money being spent on proving that CFIDS isn't depression (it's been proven many times already) or on minor treatments or supplements that offer only a tiny improvement. This morning, I saw a very lengthy treatise on "managing CFS through pacing." I don't want to manage this illness; I want to get rid of it! The glimmer of hope that there might be a chance for recovery makes me impatient with all these management strategies (even though they have helped me a bit over the years).

OK, enough ranting for today. I need to go pick up Craig from school. I'll write more soon.

Around and around it goes...

I'm finally beginning to improve a little from my bronchitis (and low white blood cell count), but yesterday, my 9-year old son, Craig, started to cough. When will this end? Between the two boys and me, we've had 5 cases of bronchitis in under two months. I don't know how my husband manages to stay healthy.

Craig doesn't actually have bronchitis yet - the doctor today said his lungs are still clear - but his sinuses are swollen again. With his history of sinus infection and our family's run of bronchitis this week, the doctor put him back on antibiotics today. His fever spiked up to 104 tonight. The poor kid is miserable. To make matters worse, it's state testing week at school here in Delaware, so he's missing that, too.

As for me, I'm going back to the lab tomorrow or Friday to recheck my white cell count. I also made an appointment today with Dr. Susan Levine in NYC. She's an infectious disease specialist and a well-known CFIDS doctor. She was recommended by a bunch of people at the immune support message board and is well-versed in using anti-virals for CFIDS. I was shocked to get an appointment with her for next week! I was worried she'd be booked for months.

I'm still pretty sick but am feeling good about seeing Dr. Levine next week. I know my family doctor will be relieved to hear it, too.

Thank you so, so much to everyone who has left me such wonderful, supportive comments this past week. I was really down, and it helped immensely to hear from all of you. I also got an amazing note from my oldest friend (thanks, Michelle!). Knowing I'm not alone makes all the difference!

Rough Times

I had a really rough weekend. Friday afternoon, my doctor left me a message that I needed to stop taking Valcyte immediately. My labwork results had shown very low white blood cell counts. It's probably due to the bronchitis, but Valcyte is known to affect bone marrow. I was upset about stopping the anti-viral, but I could tell my doctor was seriously concerned, so, of course, I listened to her.

Over the weekend, my bronchitis got much, much worse, despite the anitbiotic. Saturday passed by in a fog. I had severe, deep aches all over my body. My chest and sinuses were solidly congested,and I was coughing so hard that my ribs ached by Sunday. I mostly just stayed in bed with the heating pad. It was one of those days when I was too sick to even read or watch tv.

Sunday was a bit better, but I still feel pretty rotten today. I got up, had breakfast, read for a half hour, then went back to bed for a two-hour nap. I shouldn't even be sitting up to type this, but I was feeling desperate for some kind of connection with the outside world.

Worse than the physical problems today, I'm feeling so depressed. I'm so sick of the burdens of CFIDS, of living every minute of every day in this constant battle with my own body. I've had enough of all these limits and restrictions. I want to live freely again.

Rationally, I know that I'll feel better about my life when I start to feel better physically, that the bronchitis will eventually clear up and I'll be able to get back to my usual optimism. Emotionally, though, it just all seems so useless right now. I just want to give up, quit fighting, and somehow escape. That's impossible, of course. That's the most frustrating aspect of living with CFIDS. There is no escape, no vacation from it, just an occasional good day (if you're lucky).

Back to bed.

In Need of Nurturing

It's been one of those classic CFIDS rollercoaster weeks. I felt great on Monday, one of my best days in years. I was not only free of most symptoms, but I actually felt full of energy and motivation. Wow! I felt like me again. I cleared off the months-old clutter on the kitchen counters, walked to the bus stop to pick up my son instead of driving, sent off several writing pitches, and baked homemade blueberry muffins for my son who was home sick. Yes, I baked - for the second day in a row - amazing.

Then came the crash. My older son had bronchitis early this week, and as he started to feel better, I started to feel worse. Yup, another case of bronchitis, my second in about a month.

My doctor had warned me that being on Valcyte would make me more susceptible to bacterial infections, and, sure enough, I seem to be catching everything that comes through the house. So, I'm back on Zithromax (antibiotic) and feeling horrible today. My chest feels like it's in a vise, and my legs ache terribly.

Usually when I'm crashed, I'm content to just be alone during the day so I can rest, but today I'm yearning to be taken care of and nurtured. Maybe it's the more traditional "sick" symptoms of my bronchitis triggering memories of childhood.

When I was a kid and got sick, my mom would go into full nurture mode. She'd set me up in my bed with a drink to soothe my sore throat and my favorite Nancy Drew books by my side. When she made a trip to the drugstore for a prescription, she'd come back with comic books or a magazine and a thick chocolate shake from the local burger place. Anytime I got sick, she'd make my favorite baked egg custard pudding with a sprinkle of nutmeg on top. (That's me feeling nurtured; dig that 70's wallpaper, huh?)

Lying here alone with my aches and cough, I'm yearning for that same feeling of being cared for. My husband, Ken, does a wonderful job of taking care of our kids and the house when I'm too sick, but I would love some of that mommy-style nurturing. It would be so nice to have someone here to offer to get me another cup of tea or to pick up a favorite magazine for me at the drugstore with my medicines. And that homemade custard would feel so nice on my raw throat.

Ah, well. It's just me today. "Talking" here on my blog helped me feel a little less alone, and when everyone gets home tonight, I'll probably wish for some peace and quiet!

Valcyte Update

Lots of people have been asking me about my trial of Valcyte, so I guess it's time for a quick update. I've been avoiding focusing on it too much mainly because there's not much to report yet. I'm still not sure whether it is going to work for me or not.

I have now been on Valcyte (at a low dose of 450 mg per day) for 8 weeks. I'm thinking of this week as something of a turning point. Most CFIDS patients who've tried Valcyte report a worsening of symptoms beginning at around week 2 and lasting until week 8 or so. The general theory is that if Valcyte is going to work for you, you should experience this worsening as a sign that the virus in your cells is being killed off by the medication and is entering your blood stream.

So, did I experience a worsening of symptoms in the first two months? I'm not sure. I've certainly had my share of bad days lately, with a few good ones thrown in, but it's hard for me to tell if this is just the typical ups and downs of CFIDS or the result of the Valcyte. Many people with CFIDS who've taken Valcyte get so much worse so suddenly (most advise to plan on being bedridden for at least a few weeks) that they don't understand how I could not know for sure. There are two factors that make my case unique, though:

1 - I'm on a much lower dose than most (the official Montoya trials use 1800 mg per day for the first 3 weeks, then 900 mg per day for the rest of the six months)

2 - I started off in better shape than most. Understandably, Montoya chose some of his sickest patients for his first trial. Many were bedridden or similarly incapacitated. I function at about 40-50% of what I could do before getting CFIDS - quite impaired but considered "mild to moderate" for CFIDS.

So, for these reasons, it seems logical to expect my reaction to Valcyte to be less dramatic than what has been reported so far in most patients.

This next month will be the real test for me. If Valcyte is working, then I should begin to see some gradual improvement in this third month. If I continue to function at the same level, then it's likely this particular anti-viral won't work for me. So, I'm getting my labwork done this week and will refill for one more expensive month before deciding whether to continue. Don't worry - I'll keep you posted!

What Are You Looking Forward To?

I've been feeling kind of depressed the past few days. It's not the black despair that I felt in my first couple of years with CFIDS but just a vague feeling of being dissatisfied, tired of the same old routines, yearning to do all sorts of things that I can't. It's just that old "sick of being sick" thing, you know?

My illness-expert psychologist (her grown son has CFIDS, too) was very fond of asking me, "What are you looking forward to?" whenever I got down. She felt this embodied one of the key characteristics of depression. She said that people who were clinically depressed didn't want to do anything and weren't looking forward to anything. In contrast, people who are struggling with chronic illness and just feeling "down" had long lists of stuff they wanted to do, if only they could. So, I've gotten into the habit of asking myself this question when I'm feeling low, to remind me of the good things in my life.

After a rotten morning where everything seemed to go wrong, I paged through my Joy Journal this afternoon. I started this journal several years ago, pausing at bedtime each night to jot down whatever small joys I had experienced that day. It was a wonderful exercise, helping me to focus on the good stuff and realize that there were opportunities for joy even on my worst days. I've gotten out of the habit of the journal in the past year - probably a good sign, meaning I'm able to see the joys in my life now without much effort.

Looking back through the journal, I see that many of my joys were such simple things: sunshine, being outdoors, sharing moments with my husband and kids or a friend. It's nice to remember how many joys I still have, despite my limitations. So, I'm treating myself to a cup of my favorite Orange Zinger tea and a square of dark chocolate, and I'm looking forward to watching the DVD I picked up at the library this evening. Other joys today: I saw a cluster of robins on the lawn, a sure sign of spring on its way; and my younger son, Craig, just came bouncing off the school bus, looking like his usual energetic self, after a four-day crash. Now that's something to smile about.

What were your joys today? What are you looking forward to?

Happy Anniversary?

Friday was my 5th anniversary of getting CFIDS. On March 1, 2002, I was my usual self: energetic, active, and healthy. I woke on March 2 with a horrible sore throat, feeling exhausted and achy all over. I thought I had the flu, but...well, you know the rest.

Over the years I've had some pretty dismal anniversary days. There was the first one, when I had been terribly sick for a full year and still didn't know what was wrong with me (I was diagnosed soon after). At my two -year anniversary, I was in my worst crash ever and feeling very depressed. In year three, my own poor health was secondary to the fact that my oldest son was now officially diagnosed with CFIDS, too. Our whole family was struggling to come to terms with that unthinkable situation. By March 2 of last year, Jamie was starting to improve, thanks to Florinef, but it was becoming clear to us that our younger son, Craig, was also developing CFIDS.

This fifth anniversary is much better, but with some bitter undertones. Florinef has caused such a dramatic improvement for Jamie that he's back in school full time and able to live a mostly normal life (as long as he takes his medication). We are now quite sure that Craig has CFIDS but are hopeful that Florinef will help him as well (he's home sick today - again). As for me, I'm certainly in better shape than in previous years, and CFIDS research in the past year has offered plenty of much-needed hope. The Valcyte trials and my own personal trial with it are particularly exciting to me.

Behind this new hope, though, I'm recalling that Dr. Bell and other experts often cite five years as a critical turning point. The common understanding is that the very few recoveries from CFIDS that occur happen in the first five years and that almost no one recovers after five years of CFIDS or more. So, I've now crossed that line. Of course, the latest research on genetics and viral infections offers new hope that even the top CFIDS experts couldn't have predicted a few years ago.

Five years seems both too long and too short. In some ways, it's amazing to me that I've been sick for five whole years of my life. At other times, it's amazing that it's ONLY been five years because my "old life" seems so long ago and far away.

My family and I keep pushing forward, trying to focus on one day at a time, and remaining optimistic about the future.

Normal is Nice

I thoroughly enjoyed my day today, a day that would be considered very ordinary to most people. Other than my afternoon nap, it was simply normal. After the past two difficult months, normal was very nice.

I went into my son's third grade classroom this morning to participate in their Breakfast Buddies program. It was the first time I've been able to help out in Craig's class this year. What a thrill!

Jamie was home sick today, but so were some of his friends. This may actually be a garden-variety cold. This afternoon, I took him to the doctor for his annual physical. He's now 5' 3" - no longer any doubt that he's passed me up!

The most amazing thing about today was that I was able to interact with other people in such a normal way. I didn't notice a single CFIDS symptom all day, so I felt well enough to chat with the other parents in Craig's class and trade pleasantries with the receptionist at the doctor's office. That kind of ordinary interaction with other people is what I miss most.

All in all, a very normal, nice day.

Happy Mardi Gras Day!

We used to live in New Orleans, and Mardi Gras is still a major holiday for us! This year was scaled back considerably, though. With Mardi Gras weekend falling right on my niece and nephew's birthdays and the uncertainty of my new anti-viral treatment, we made the difficult decision to skip our traditional party. Even in its abbreviated form, it would have been too much for me this year. Ken had to go out of town this week for work, so he's not even here to celebrate Mardi Gras day with us.

The boys and I are still celebrating, though. They had green, gold, and purple sprinkles on their oatmeal this morning and wore their "party shirts" to school with some Mardi Gras beads. Tonight, we're heading over to our friends' home for our annual Mardi Gras feast of Popeye's chicken and red beans & rice, with bread pudding and King Cake for dessert. Mmmm!

I'm doing quite a bit better than the last time I wrote here. My bronchitis cleared up with the antibiotics. It's now been a full month since I started Valcyte, and I'm generally doing pretty well. Still too early to tell if its the treatment or the usual CFIDS fluctuations.

I was certainly in far better shape this weekend than a year ago. We traveled to Connecticut for my niece's 5th birthday and my nephew's 1st birthday. My Mom noticed how much better I handled the noise and chaos of a preschool birthday party this year. It was a Superman/Wonder Woman party - as always, my family got into the spirit of the occasion (that's my Mom, my sons, my niece, and me)! I was actually able to enjoy myself this year.


So, check out the great photos, videos, and live webcams at Nola.com for a little taste of the festivities. Laissez les bon temps roulez!

Setbacks and Struggles

Another lost week. I caught Craig's bronchitis, and it completely knocked me out this week. Plus, Craig's infection recurred, and Jamie had a 1-day crash. I was so sick that I spent 3 days in bed. On Wednesday, both boys were home sick, and I pretty much ignored them (they watched way too much tv!).

So, I'm on Zithromax, and Craig is back on it. The boys are both back in school (just in time for the weekend again), and I'm doing a lot better, though still kinda crummy with really low stamina.

I saw my doctor on Tuesday when she diagnosed the bronchitis. Of course, this infection muddies the waters and makes it difficult to tell what, if any, effect the Valcyte is having. I talked to her about dosing, and she said this is as high as she feels comfortable going. I had my labs done today, so we'll see what they show. I will probably refill the Valcyte for one more month to give it some more time, unless my doctor sees something alarming on my blood tests.

Now that I'm out of bed, I feel so overwhelmed. There are stacks of paperwork everywhere (bills, school stuff, mail), about 80 e-mails in my inbox, and so many writing projects waiting. For the past 6 weeks, I feel like I've been in survival mode, every day just focusing on getting over the next hurdle, never able to move forward or get much done. I know it's this way for everyone with CFIDS (and plenty of healthy people, too!), but it's been especially bad for me since January 1.

My next hurdle is another half day of consulting on Monday, so I'll need to take it very easy this weekend (again) to make sure I'll be able to do it. Then, I'll need to recover quickly because we're driving 5 hours to my sister's house next weekend for my niece and nephew's birthdays. It'll be a busy, chaotic, crowded weekend, so I'm worried about that, too!

Just one day at a time, right?

Two Week Update

Whew, where did the week go? Both of my sons were home sick this week, so it was almost impossible to get anything done. Craig had bronchitis; Jamie had your run-of-the-mill CFIDS crash. Both are doing fine now. They went back to school yesterday, just in time for a 4-day weekend! This is the first crash Jamie's had since mid-October, and he only missed two days of school this time. Absolutely amazing compared to how sick he was last year.

So, I'm sure you're wondering whether the Valcyte is working for me. I'm wondering, too! I've been on it for two weeks now. From what I'd read, I was expecting a sudden worsening of my symptoms as an indication that the Valcyte was working (this is called a herx reaction, common when treating a long-standing infection). I felt pretty crummy for the first week and a half, with really low stamina. I couldn't really tell if this was my "worsening," though, since I'd been in a crash since January 1. Yes, it was worse than "normal" for me but not much different from how I'd felt all month. I was feeling a little down, thinking I'd had no reaction to the medication at all, and it wasn't going to help me.

Then I began exchanging information with other CFIDS patients on Valcyte. THANK YOU to all the people who told me about the message boards at Immune Support!!! Reading about other people's experiences and other doctor's approaches has made a huge difference for me. If you're interested, there are several discussion threads specifically about Valcyte and other anti-virals. You have to register, but it's free and quick.

One thing I learned is that Dr. Montoya is using a much higher dose of Valcyte in the Stanford trials than I'm on. At first, I worried that my dose was too low, but I've learned that some doctors are using lower doses to try to minimize the initial worsening. I'm also wondering whether a lower dose might be appropriate for me since I'm not as severely ill as most of the people Dr. Montoya is treating. I've had CFIDS for just under 5 years and function at about 40-50% of what I could do before getting sick. It's bad, but I know that there are plenty of people with CFIDS who are much sicker, even bed-ridden. I've also done a lot already to help improve my immune system function, which could help me to better tolerate the anti-viral treatment.

So, bottom line is that I'm still not sure whether the Valcyte will work for me. I had three very good days (in a row!) this week, but I'm crashed today after a shopping expedition yesterday. Next week, I'll go to the lab for blood tests to monitor how I'm reacting to Valcyte, and then the week after, I meet with my doctor so we can decide whether to continue the treatment. After what I've learned this week, I'll also talk to her about the dosing.

If you're interested in learning more about treating CFIDS with anti-virals, Dr. Martin Lerner is another doctor who's done a significant amount of work in this field. His website includes an excellent summary of his research (click on Professional Publications).

So, I'll rest up today and hope for a decent weekend.

Working for a Living

I did it! I survived my first half-day back in consulting work. I'm still floating on a cloud of elation, relieved that I was able to manage this and thrilled that I am contributing to our family income. I've had so many conflicted feelings about work and CFIDS over the past few years that this feels like a big step forward emotionally, a huge achievement.

Years ago, BEFORE, I worked as an environmental management consultant, helping companies to learn how to decrease their environmental impacts. It was rewarding work, though very intensive and requiring constant travel. I enjoyed a bit of minor celebrity, becoming fairly well-known in my field, giving talks at conferences, and even publishing a book. After Jamie was born, I moved into management to try to reduce my travel, but I was still had a hectic schedule. By the time Craig was born in 1998, Ken and I were both pretty burnt out, feeling like our lives were flying by in blur. In 2000, I left my career behind to try to slow down the pace of our lives and enjoy my family more. We figured we had enough savings to last us a year or two, and I could try to earn money through freelance writing. I was thrilled with this change, feeling very content with our more relaxed life, and excited about my new writing career. Ken and I always said that anytime we needed more money, I could do some consulting.

Then, on March 2, 2002, I thought I'd come down with a nasty flu...and you know the rest of that story, right? In the past few years, I've had offers for consulting jobs, but I didn't have the stamina to do the work. Each time an opportunity came up, I was wracked with conflicting feelings. I desperately wanted to contribute to our income and relieve some of the financial pressure I knew Ken was feeling, but I was scared that I'd commit to a job I couldn't do or push past my meager limits with long-lasting consequences.

Several times in the past two years, I came close to accepting a job. The first opportunity seemed doable since the company mainly wanted me to do the sort of work I could do at my own pace, at home. After much deliberation, I signed a contract with them, and then they told me the first thing they wanted me to do was a three-day audit at a site several hours away. Auditing is very physically and mentally exhausting work, and this job would also require travel. I knew I couldn't do it, so I was forced to tell them about my illness. I tried to downplay it and suggested ways they could accomodate me - working in half days, taking a 2-hour break mid-day, etc. Guess what? I never heard from them again.

Another opportunity came up six months ago when an old colleague called to ask if I could help with one of her clients. She's a good friend and knows all about my CFIDS, but the physical challenges still seemed daunting to me. I spent weeks worrying and obsessing over it. I could see that Ken desperately wanted me to do it, I knew our finances were getting tighter and tighter, but it still seemed like an insurmountable physical challenge. I ended up saying no and felt that, for the first time, I was admitting that I might never be able to do that kind of work again (or earn that kind of money). I sort of said good-bye to that part of myself. I also came very close to actually throwing away all my old files and binders.

Then, last month I got an unexpected call from someone whom I'd previously turrned down work. He knew about my illness but had a small, local job perfect for my background and wondered if I was well enough to do it. I'd had a great two months, he had no problem with my working in half-day increments, and the client is only 14 miles from my house. So, here I am! I spent every ounce of energy the past two weeks preparing and relearning all the stuff I used to teach other people. I even had to reread my own book. I was scared to death that I'd wake up this morning unable to get out of bed, so I've spent much of the past week lying on the couch, saving up my energy. But I did all the prep work, made it through my half-day on-site today, and can now send an invoice for a very nice sum. Hooray!

It's probably just adrenaline or endorphins or something, but I really felt well today and didn't have any symptoms at all while I was at the plant. I realize there'll be payback, and I expect to crash tomorrow, but for now I feel good. I think we'll break out the sparkling fruit juice tonight and celebrate.

More Information on New Treatment

Wow...since I posted my last blog about starting Valcyte, I've received a lot of e-mails expressing support, concern, and requests for more information. Thank you all for your notes. I'm reminded once again of how grateful I am for this virtual community of people with CFIDS. I don't know anyone in my local area with CFIDS (though I know there must be plenty of them out there...), and it means so much to be able to "talk" things over with others who fully understand.

I had a few instances of cold feet this weekend (figuratively and literally, with my usual weird temperature fluctuations!). Bottom line is that I have embarked on a course of treatment with a lot of uncertainties, and it's a little scary.

My doctor commented that most clinical experience with Valcyte has been with AIDS patients and organ transplant patients, both of whom have seriously deficient immune systems. The risks and side effects known for those patients might be completely different for me. Yes, I'm ill, but with a mostly overactive immune system and otherwise healthy organs. Who knows how I'll react? Ultimately, I made my decision based on my doctor's support...which was based in large part on her experience with me in the past. She doesn't really know what will happen either.

I don't want to persuade others to try this treatment based only on my experience because there could be significant risks involved.

Here are some of the sources that my doctor and I reviewed:

Virus-Induced CN Dysfunction Website
(a different way of looking at some cases of CFIDS; Dr. Bell told me years ago that he preferred to call the type of CFIDS that Jamie and I have Post-Viral Dysautonomia - same sort of thinking)
I was particularly interested in the page on this website about Testing. In my case, all of the labs used by my insurance company use a fairly useless internal index to report HHV-6 antibodies, so we decided to forgo the test. This page also lists the lab that Dr. Montoya uses for the Valcyte trials at Standford, as well as the link for the upcoming trial (which I would have tried to join if I lived in San Francisco).

HHV-6 Foundation Website
More good information on current research on HHV-6 in CFIDS, including links to Dr. Montoya's research abstract and a full text summary of recent presentations on the topic.

PDR Listing for Valcyte
Here's the listing for Valcyte from the Physician's Desk Reference. This is where it gets scary, but many drugs have long lists of side effects and warnings. My own doctor's intrepretation was important to me at this point.

Well, I hope that helps others to learn more of the facts.

As for me...well, so far I have no idea if it's working or not. I felt pretty good on Saturday and moderately crashed on Sunday. That could easily be more of the same pattern I've been stuck in since January 1 or it could be the start of my worsening due to the drug which would mean that it's working. Impossible to tell yet. I'll keep you posted!

Jumping in With Both Feet

A week ago, I wrote about the exciting new study from Stanford about the 21 people with abrupt onset CFIDS who recovered with the anti-viral drug Valcyte. Since then, articles about the groundbreaking study have been popping up all over (Red Orbit, Boston Globe).

Patience has never been one of my strong points, so yesterday I started Valcyte myself to see if it will help me.

I have still been stuck in this terrible crash that began January 1, still spending days in bed with only brief periods of feeling good. I went to see my doctor yesterday. She has prescribed anti-virals (usually Famvir) for me in the past when I've gotten stuck in a particularly bad crash , and it often helped. I was like a limp rag at the doctor's office, barely able to walk.

As always, my doctor listened to me carefully (and I'm sure could see how bad I was for herself) and considered how to help me. It's a joke between us that I always have some new piece of CFIDS research in hand when I go to see her, and this time I had the new Valcyte study. She'd seen the news herself but now studied it more carefully and said she thought we could try it.

The downside? For starters, the first month's supply cost $300 (that's WITH insurance coverage; without it's $1200). Ken and I figure if it works, I'll be able to earn the money to pay for it (not to mention the money we spend on medicines and supplements now).

In addition, the study summaries I've read said that all of the patients got worse before they got better. This is a big concern for me short term, since next week I start this new consulting job that I'm already scared I won't be able to do. On the other hand, if I continue in this crash as I have for the past three weeks, I wouldn't be able to do anything next week anyway. It's a gamble either way.

I'm scared and excited and trying desperately not to get my hopes up too high. My mind keeps drifting to "what if" scenarios. What if I could work again? What if I didn't have to take a nap every day? What if it might work for my two sons?? The results in the study are so stunning, the stories of the recovered CFIDS patients so enticing.

So, I jumped in and started it. It might work, it might not. I'm trying not to think ahead, just to take each day as it comes, as I have for the past five years.

Coming Back to Life...Slowly

The last few days have passed in a blur of pain and exhaustion. This weekend was Craig's 9th birthday. My family drove down to stay with us, and we had a big party planned for Craig's friends on Saturday. Ten people living in our house for three days, and twelve boys ages 8- 12 running around Saturday afternoon. It's not too hard to predict what would happen to me, is it?

I expected to crash a bit after the party, but the reality was so much worse. I've been severely crashed more than half the time since New Year's Day (no idea why). I felt good briefly on Friday morning, ran around to do the errands I'd had to put off all week, and quickly crashed again. I woke up Saturday morning with my throat burning and my legs aching. I don't know how I made it through the party, but afterwards, I crawled into bed and stayed there the rest of the weekend, despite our house full of guests.

It wasn't all bad, though. While lying on my back all last week, I planned a rather elaborate Amazing Race party for Craig and his friends. With the help of my family and my wonderful friend Amy, the party was a huge success. Craig and his friends raced all over our house for two hours, making forts, hunting items in a scavenger hunt, solving secret codes, and taking on all sorts of challenges. The kids had a blast. Most importantly, Craig loved it and had a great time with his friends.

Even better, our birthday surprise for Craig was a huge hit. We got him a pet hamster, and he is beyond thrilled. He's a very loving, affectionate kid, and he's wanted a furry pet for a long time. He must have thanked us (for the hamster and the party) hundreds of times this weekend. Both of our boys seem to be in good shape this morning, so that's more good news - no crashes for them after the wild weekend.

As for me, I don't know what's going on. I've spent eight of the last fourteen days in bed. My boys would say I jinxed myself last month when I said I was feeling better than I had in four years (I was!). There's no doubt in my mind that there's some sort of virus behind this, whether as a trigger for a bizarre immune system response or directly affecting me. I feel a great deal of empathy for those with CFIDS who feel this bad all the time. I know I'm fortunate to be able to function as well as I do most of the time, even though it's about 40 - 50% of what I could do before I got sick.

I'm trying to break this cycle by taking things real slow now that I'm feeling decent again today. Maybe a few days of continued rest will finally allow my body to get back to where I was before.

New Hope?

Our whole family got excited last night about a new study that shows promise for those of us with CFIDS. The basic story is that researchers at Stanford treated two dozen people with CFIDS with an anti-viral drug typically used to treat diseases caused by the herpes virus. The bottom line? Twenty-one of the twenty-five patients experienced significant improvement that has lasted for years after finishing the treatment! All patients whose CFIDS started suddenly with a flu-like illness recovered. The best news of all? A follow-up study (double-blind, placebo controlled) is starting this quarter, fully funded by the pharmaceutical company that makes the drug. Take a look at the details at the link - the stories of the recovered CFIDS patients are so exciting!

My boys screamed and cheered last night when they heard me telling my husband, Ken, about this study. We're all pretty fed up with this stupid disease this week. Craig and I have both been crashed for most of the past week. I've had several days where I was so sick that I spent most of the day in bed. This is unusual for me these days. It's such a disheartening feeling to see the days slip past this way.

Poor Craig has missed four days of school. He went back in this morning, but I expect a call from the school nurse at some point to come pick him up. He was still not back to normal this morning but was determined to go to school. He's had a headache for four days now, so I'm afraid he may be developing a sinus infection.

Craig's 9th birthday is Saturday, and we have plans to have a dozen boys to the house for an Amazing Race party. I'm so worried he'll still be sick. Even worse, the weather forecast is predicting rain all weekend. I was really counting on having this party outdoors! Plus, we have six of our extended family coming to stay with us for the occasion. Wish us luck...