Happy Halloween 2008!

Well, it's been a rough week for us, but we made it to Friday and Halloween! We really get into the spirit of celebration on Halloween - it's one of our favorite days of the year. And we really needed this day of celebration this week. Here we are, ready to go out trick-or-treating - Ken as Frankenstein, Jamie as a zombie, Craig as a mummy, and me as a witch! Ken and the boys are still out in the neighborhood, with a couple of friends. I did my usual few houses near our cul-de-sac and came home to put my feet up.

I'm back on antibiotics for Lyme and seem to be having a herx reaction (the initial worsening when treating a long-time infection) - I've felt pretty crummy for the past few days. I got depressed this week when I realized the Lyme was not completely eradicated - and may never be. A local friend who heads up the Delaware Lyme Support Group helped me a lot, with both advice and emotional support. I was also deeply touched - and greatly helped - by all of the wonderful, caring comments you left on my blog this week. Those comments meant so much to me at a time when I felt so alone. Thank you!

Hope you had a fun Halloween!!

A Bad Day

One of my blog readers recently remarked about how I seem to have a great, positive attitude and always seem optimistic. I'm not feeling like such a sunny optimist today, though.

Ever have one of those days (or two days) when everything seems to go wrong? The past 24 hours have been really rough for me. For starters, I was very sick this past weekend and am still not back to where I usually am. By Monday, I was doing a lot better, but my 10-year old son, Craig, crashed. When two of us at a time crash, it usually means there's a viral trigger around somewhere. So, Craig's been home from school all week, though he did manage to go in for the last few hours today.

I had to take my older son for x-rays yesterday after school. He hurt his elbow playing soccer a couple of weeks ago, and it doesn't seem to be healing, so the doctor said to take him for x-rays. On our way home - in freezing cold rain and heavy winds - I went around a curve in the road and suddenly felt the car lurch out of my control. I tried to brake and to steer, but the car seemed to have a mind of its own, and we hurtled off the road, over a curb, and finally stopped in some bushes.

It was terrifying, and all I could think about was that the boys were in the car with me. I backed out of the bushes and pulled forward, back down off the curb (probably a mistake in hindsight), and to the side of the road. The right front tire was blown, which is probably what caused me to lose control of the car. Since I drive a very small, low car (a 92 VW convertible), and it was a high curb, I decided to have the car towed to the dealer, just to be on the safe side. I also wasn't entirely sure whether the blown tire caused the accident or whether something else had gone wrong and the tire blew on the curb.

Fortunately, we were all fine, just shook up. My husband arrived shortly after the tow truck, and we finally went home. The service manager called me today - it's going to cost $650 to fix my car (two wheels and another part were damaged, plus the tire). As with most people these days, money is very, very tight right now. I just sent a pile of medical receipts into our Flexible Spending Account to get the remaining $800 out. Some of that was going to be for Christmas presents - now most of it will go into just keeping my car on the road.

Then, I woke up in the middle of the night, with severe pain in my left knee. The knee pain has been bad all day long. I just finished my antibiotics for Lyme a few days ago, but it looks like it may be back. Of course, the stress of yesterday's accident almost certainly caused a CFS flare-up, but knee pain for me has been associated with Lyme, not CFS. Ironically, just today someone sent me a study about how Lyme bacteria can linger in tissues long after antibiotic treatment. So, I just got off the phone with my doctor, and she wants me to go back on doxycycline for awhile longer. This was really the last straw today. I thought I was through with Lyme and back to "just" living with CFIDS. I really just lost it earlier today at the thought that the Lyme is still there, hiding in the tissues of my knees.

I know I have some things to be grateful for. Craig went back to school today. No one was hurt yesterday. If the left tire had blown instead of the right, we would have been propelled into traffic instead of off the road. I know we're fortunate it wasn't worse. But our money situation just gets worse and worse, and the Lyme still being present is overwhelming to me right now. Not feeling very positive or optimistic today.

D-ribose?

Has anyone tried taking D-ribose supplements?

I've read about this natural sugar supplement for improving energy in CFS and fibromyalgia from several different sources. I've been meaning to try it for a few months, but there have been too many other things going on - finishing Valtrex, starting Lyme treatments, etc. Now I'm finally at a point where things seem stable (for the moment!) and my underlying infections have been treated, so I'm going to try it.

From what I've read, D-ribose is normally synthesized by a healthy body to help rebuild energy. Since CFS messes up our metabolism and energy production, our bodies can't make enough D-ribose on their own. I've read about many people with CFS and FM who say D-ribose helped.

So, I just ordered some of the powder, and I'm going to give it a try. I'll let you know how it goes. Has anyone else tried this? If you have, I'm interested to hear if it's helped or not.

What Is Energy?

I've continued to feel mostly good this past week - still no sign of the Lyme recurring. I have been super-productive lately, catching up on insurance paperwork (mainly because we desperately need to get back the money due to us!) and showering my editors with new ideas for articles and reviews. I still feel my mid-day slump, from late afternoon till early evening, when I need to take it easy, but by evening, my mind is in high gear again. I lie in bed thinking about all the new projects I want to start, composing various writing pieces in my mind, excited about waking up in the morning to a new day full of new possibilities.

It occurred to me last night that energy and its nemesis, fatigue, are about so much more than simple physical capability.

When CFS flares up and I am crashed, my brain feels like it's filled with molasses. There are the physical symptoms - sore throat, flu-like achiness, exhaustion - but there is also a mental exhaustion. In this state, I am almost incapable of writing at all, let alone putting together new and creative ideas. Not only that, but I don't want to write or do anything else. When I am badly crashed, all of that mental energy disappears. There are no new ideas, no eager anticipation of what to do next, no motivation to do anything at all. At these times, my mind craves rest just as much as my body. I feel dull, lazy, and apathetic.

In contrast, on a good day, I am filled with drive and enthusiasm, eager to start work each morning and frustrated when I have to quit for lunch and my nap. I am still aware of physical symptoms at these "up" times and know I have to respect my limits. I switch to writing on the laptop in the recliner when my throat starts to hurt or take only a short walk even though I feel full of energy, in order to avoid a later crash. But even with these physical restrictions, my mind feels free and full of energy.

Then there are days like today. I walked for too long yesterday with a friend at the park (I still haven't learned!) and have crash symptoms today - sore throat and aches. Interestingly, though, I still have mental energy today. Even as I force myself to lie on the couch to rest, my mind is still working at a fast pace, coming up with new writing ideas as quickly as I can jot them on the pad by the couch, eager for my body to feel well again so I can pursue my goals.

I am fascinated by this change in mental energy with my CFS symptoms. I feel very fortunate to have good days now and realize why long, severe crashes are so hard to endure - it's not just the physical restrictions but that empty, listless feeling that makes it so impossible to do anything at those times.

Interestingly, the first improvement I noticed when I started taking anti-viral medications was a mental clarity that I hadn't even realized I'd been missing (click on the anti-viral tag at the end of this blog entry to read more). I guess I assumed that the sluggish feeling that was a part of CFS was merely based in feeling poorly physically. I've heard many others on message boards mention the same experience - improved mental clarity after taking anti-virals. So, it is definitely a physical, bio-chemical kind of brain thing, apparently caused or worsened by the presence of infections. Whatever causes our well-named brain fog, I am hugely grateful to now experience large blocks of time without it.

And now, it's time to once again listen to my body. My sore throat is getting worse, even in the recliner with the laptop. Time to stop trying to work and get flat on the couch.

Lyme Disease Update

Sorry I didn't have time to write again last week as I'd promised. My husband is in Europe on business for a week and a half, so I've had my hands full taking care of the house and kids. In fact, I had to just sacrifice today to the couch and bed. By 8 am, I was already exhausted from our busy weekend!

I wanted to give you an update on my Lyme treatment - hopefully, my last Lyme update. I saw my doctor last week, and we are hopeful that I'm coming to the end of my ordeal with Lyme. I finished one antibiotic (Zithromax) and have another week left on my two-month supply of the other (doxycycline). More importantly, I'm finally feeling good again. I've now had about two weeks of feeling quite good - seems like back to where I was earlier this year, before Lyme struck. I haven't had any knee pain at all in almost 3 weeks. My doctor is not 100% convinced that we have completely eradicated the Lyme bacteria - I never did test positive on any of the tests run - but she said we'll see what happens when I finish the doxycycline. If my symptoms come back, I'll need to go back on antibiotics.

As a quick recap for those who haven't been following my blog the past few months....
I have had CFS since March 2, 2002. I got Lyme this summer; my symptoms began in mid-July. Although CFS and Lyme often have very similar symptoms, I am quite sure my Lyme was a recent infection because:

• I have never had any joint pain before with CFS. When I got Lyme this summer, I had sudden, severe knee pain.
• I am one of the fortunate few with CFS who has never had severe cognitive dysfunction, only mild symptoms, like difficulty with word-finding and brain fog when I'm badly crashed. Long-term Lyme affects the nervous system and causes severe cognitive problems.
• I was actually mis-diagnosed with Lyme back in 2002 when I first got sick. I took 90 days of doxycycline at that time, under the care of an Infectious Disease specialist, with absolutely no effect at all.
• My CFS has improved quite a bit over the past 6 years, especially in the last year with anti-viral treatment and low-dose naltrexone. Lyme left untreated with antibiotics would get progressively worse.

I had no bulls-eye rash with Lyme (only a small percentage of people do) and was not aware of a tick bite (again, many people with Lyme aren't), but we spent 3 weeks outdoors camping and hiking in June and July on our vacation. Besides, a recent CDC study showed that Delaware had the highest per capita rate of Lyme of all 50 states from 2004-2006. It's almost an epidemic around here.

The first signs of Lyme are usually flu-like symptoms, but this wasn't true for me. I felt fine until my knees suddenly started to hurt. Joint pain is considered a sign of Stage 2 Lyme Disease. My 14-year old son has had Lyme twice before, and his first symptom was also knee pain (at the same time as flu-like crash symptoms). So, I wonder whether CFS's immune system abnormalities mask those very early symptoms of Lyme.

My knees had hurt for about a month when I started antibiotics, so the Lyme bacteria had a chance to possibly penetrate my tissues. This is part of what makes Lyme difficult to treat, unless it is caught very early, and also what makes the blood tests for it so inaccurate; the Lyme bacteria does not stay in the bloodstream but penetrates tissues and "hides" there.

All in all, I took doxycycline for 8 weeks and Zithromax for 3 weeks. Hopefully, that will be it for me. We'll see what happens when I finish the doxy next week. For now at least, I'm feeling much better and have been able to resume my "normal" life. I never thought I'd be glad to "just" have CFS!

More information on Lyme and CFS here.

New Stuff!

After coveting all the cool features of other people's blogs, I finally realized I needed to update my very old template in order to have some of that myself. It was easier and less painful than I thought, and now I've been able to add all kinds of cool stuff - a list of links, RSS feed (which I still don't completely understand), and the ability to find my blog entries by category/label.

When I have some extra time, I'll peruse all the other features now available.

Oh, boy - how exciting to be up-to-date for a change!

By the way, I've been doing much better the past week or so and think I may have finally licked Lyme disease. I'll provide a full update on Thursday, after a check-up with my doctor and review of the latest lab results.

An Epiphany

Last week, I wrote here about play and having fun, and this past weekend, I got to see for myself why these things are so important, especially in a life partly defined by illness.

My mother and her husband, Ed, came from Connecticut to spend the weekend with us, and we had a full schedule, with two soccer games on Saturday and a big homemade pasta meal my mother had planned for the kids to help with Saturday evening. On Sunday, my husband and Ed took the boys to a NY Jets game in New Jersey, while my mother and I took the train to NYC to see a Broadway show.

As often happens when we have guests, I overdid while preparing for their visit and didn’t feel well on Friday and Saturday. To make matters worse, I was very worried that Sunday would be too much for the boys and me. I wondered whether spending the day at the football game would cause one or both of the boys to crash, after playing soccer on Saturday. As for me, I’ve had a rough few months lately fighting Lyme disease, and I really doubted my ability to make it through a day-long trip to NY when I hadn’t gone without an afternoon nap in years. So, I really didn’t enjoy any eager anticipation of this treat that my mother had been planning for so long.

All my worrying was for nothing. The boys had a blast and were both able to go to school on Monday. I rested as best I could on the train and ended up thoroughly enjoying lunch, the show, and dinner with my mom. We saw Wicked, which I’ve wanted to see for a long time, and it didn’t disappoint. There is just nothing like seeing a live show – the music, the dancing, the costumes and sets. It’s exhilarating and transporting.

Throughout the day, I was still constantly aware of my limits and restrictions, always noticing my symptoms and modifying my actions to account for my illness. But at some point, I started to relax a bit and actually enjoy myself. I love visiting NYC, and I enjoyed the break from my daily routine.

By the end of the day, I became aware of how stressed and tightly wound I’ve been lately, of how rarely I do have fun or play. I also realized how difficult I’ve been to live with, carrying around so much constant worry (and lately extra pain, too) that I’ve been like a dark cloud over our house. My husband and kids have been understanding (as we all are, with three of us in one house with CFS), but it suddenly hit me that our family has not had much fun lately.

Now that I’m back to my normal life (and I survived my big day without crashing afterward!), I’m trying to remember what a difference my attitude makes. It’s going to take some work to break bad habits, but I want to try to worry less and relax and enjoy myself – and my family – more. It’s not always easy, but I know this will not only make me happier but help me to feel better physically as well.

Do You Play?

A few weeks ago, I heard a program on NPR about the importance of play, and its message really got me thinking. The guest on the program has written a book about play, and he talked - as you might expect - about how important play is to children's development and how kids today don't have enough time for free play. But he also talked about the importance of play and fun in the lives of adults.

His message really stuck with me. Last weekend, I was feeling frustrated and a bit depressed because it seemed like all I do is try to "get things done", and, of course, that job is never finished! If I have any unscheduled time when I'm not rushing to take care of our family or the house or my work, I look at my never-ending list to see what else I can accomplish. Living this way leaves me feeling overwhelmed with responsibilities, constantly behind, and severely lacking in fun.

When this feeling hit me hard on Sunday afternoon, I did something about it. I went outside and threw a Frisbee with my boys. I could only manage about 20 minutes, but it worked! I had fun and played and felt much better afterwards. The problem is sustaining that kind of mindset on a daily basis.

I've been thinking - what do I do to play? I used to know how to play. My mother is like the Queen of Fun, and Ken and I spent our weekends having fun when we were first married. Things have changed, though. Somehow, our lives now seem full to bursting with responsibilities. I spent hours last evening just trying to catch up on all the paperwork for school and other necessities - field trip forms, checks to write, permission slips to sign, dates to write on the calendar. It feels like this kind of maintenance stuff has just taken over our lives - not to mention taking care of our family's basic needs, like planning meals, shopping, cooking, dishes, laundry...

I know lots of parents feel overwhelmed like this, but there's also the added challenge of living with a chronic illness. How on earth am I supposed to have time for play when I barely have enough energy to feed my family? And what does play look like when you can't do anything physical? For most people, play means activity. Before I had CFS, we made sure to go hiking at least once during the week, I took walks with friends, we played soccer in the yard with our kids, I did all sorts of things that I'm only rarely able to do now.

So, how do I play? Well, I read a lot - that's something I can do even when I'm very sick. And we spend time most evenings watching favorite tv shows or a movie on weekends (by evening I don't have the energy for anything but lying down). So, I enjoy reading, tv, and movies, but is that really play? I guess any leisure time helps. I participate in two (sometimes three) book groups when I'm able to, and I enjoy that very much. I love my weekly walks with my two closest friends, but I haven't been well enough for that in a couple of months now. I really love to play games, and my kids know that Mom is always up for a board game or card game. With the added bonus of wonderful memories of marathon game sessions with my best friend, Michelle, when I was a kid, games definitely qualify as play for me.

So, I think I do have some fun sometimes, but I could definitely use more play time in my life.

How about you? How do you play or have fun?

A Good Day

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

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

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

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

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

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

Adrift

That's the word that describes how I've been feeling lately. Dealing with Lyme disease for the past two months brings me back to my early emotional struggles when I was first sick with CFS. I'm feeling that same kind of sense of being disconnected from the rest of the world and from my normal life, of being on hold.

I am definitely improving with antibiotics (for Lyme), but the progress has been slower than I'd expected, with lots of ups and downs. You'd think I would be used to ups and downs after living with CFS for 6 years, but it seems that I got used to being more productive during the first 7 months of this year, while I was feeling better than usual. Now, I'm back to not being able to get much done, and it's so frustrating! When I do have a good day, I scramble to get everything done and end up feeling worn out again - sound familiar?

I'm especially frustrated in my writing career. I started this year with some goals to expand into new markets and do more travel writing and book reviews. I really enjoy writing about travel but have only published a few brief pieces previously, so I wanted to expand my efforts this year. In the first half of the year, I was feeling so much better that I was able to accomplish a lot and submit to several new magazines. But now, everything just feels stalled, and I haven't sent out anything new in months. When I do feel well, I'm so busy with catching up on stuff around the house that my writing has really been on hold since June.

My feelings of drifting and being inadequate really hit me hard this weekend, so I'm starting the new week with renewed commitment to my writing goals. I am having more good days and want to try to use my limited energy in a more targeted way, instead of just drifting around, trying to catch up all the time.

I'm pretty tired this evening, but I did manage to finally knock something off my writing to-do list this morning. I updated my family travel website. I also bought a few new magazines that feature travel articles so that when I need to rest, I can still be working toward my goals (aka market research!) I have lots of ideas on how to expand my work of reviewing children's books, too, but that's part of my problem - so many plans and so little energy!

I'm hoping my efforts will help conquer this feeling of being on hold, even though I know I still need plenty of rest and after the Lyme is eradicated (I hope), I will still be left with CFS. I need to keep reminding myself that I've been here before; I just need to re-adjust my expectations again. It's seems this is a lesson I need to keep re-learning.

Lyme Disease & CFS

I just came from my doctor's appointment and wanted to share what's going on with me, as well as some resources on Lyme Disease. I thought I knew a lot about Lyme, but I'm learning there's a lot I didn't know. I'm very fortunate to have met someone online who just happens to live nearby and share my doctor and has struggled with Lyme and other tick-borne infections in herself and her son for many years. She's also been a Lyme support group leader for five years. She's been in invaluable source of information and support.

As of today, I have been on antibiotics (doxycycline) for a month to treat the Lyme. I've improved a little bit during that time, though not nearly as much as I had hoped for. I still have knee pain - still severe at times, especially in the evenings - and my CFS symptoms are still worse than they were before Lyme.

One thing I've learned is that Lyme and CFS are even more similar than I previously thought. My new Lyme friend explained to me that Lyme often causes viral re-activation - just like CFS! Because of this, many Lyme patients take anti-virals, like Valtrex or Famvir, in addition to antibiotics. In fact, after my first two weeks on abx, I felt worse than ever. When I learned about Lyme causing viral activation, I filled a prescription I had been holding for Famvir (my Infectious Disease doctor suggested I try it after I finished my 18 months of Valtrex on August 1). Voila! I felt much better within hours of starting the anti-viral.

I thought that joint pain was an early symptom of Lyme disease, but I've recently learned it's actually a symptom of Stage 2 or 3 Lyme disease. Here's the NIH summary of Primary Lyme Disease, Stage 2, and Stage 3. The odd thing is that knee pain was my first symptom. Normally, a person with Lyme first experiences flu-like symptoms. It's easy to see how this could be confused with the flu-like symptoms of CFS, but I actually felt great in the weeks before my knee pain started. I can only guess that my CFS-messed up immune system made me respond differently and obscured those typical early signs of Lyme.

In fact, it can be extremely difficult to differentiate between CFS and Lyme, which is why many people are misdiagnosed. To make matters even more confusing, it is not only possible but fairly common to have BOTH Lyme and CFS since Lyme is a known trigger for CFS. I've learned I'm no expert, but here are a few things that can help to distinguish between Lyme and CFS:

• CFS often (but not always) occurs in a unique relapsing-remitting pattern, where you feel good on some days but even mild exertion can trigger a crash.
• CFS often includes a recurring sore throat and/or swollen glands
• CFS is partly defined by exercise intolerance
• Lyme will not get better without treatment - it will get progressively worse
• Lyme responds to antibiotics
• Although joint pain is one of many symptoms that can be a part of CFS, if joint pain is one of the most prominent symptoms, Lyme should be considered.
  

Some people have asked me whether I might have had Lyme all along, but for me, it was obvious when I recently got Lyme because the knee pain started very abruptly and was a new symptom. Also, through various therapies, medications, and carefully monitoring my activity level, my symptoms have improved over the past 6 years. Most recently, due to anti-virals and low-dose naltrexone, I was actually doing very well for the first 7 months of this year. If I had had Lyme all along, I would have gotten worse, not better. Besides, I was mis-diagnosed with Lyme when I first got sick 6 years ago and had tried 90 days of antibiotics with absolutely no change in my symptoms at all.

So, to address some of the questions I've been getting lately, here are some resources for those who want to learn more about Lyme, thanks to my friendly Lyme expert:

• Because the region where I live has a very high incidence of Lyme, a local Lyme Association offers lots of great information, including a General Information booklet that can be downloaded at this page.
• The International Lyme and Associated Diseases Society website offers information and resources on Lyme and other tick-borne infections.
• Dr. Holtorf in California treats CFS and has several articles available on his website about Lyme.
• A recent newspaper article about the difficulty of diagnosing Lyme
• An article on the rising rates of Lyme on Nantucket

The plan for me is to continue doxycycline for another month. If I'm not better after another week, my doctor is going to add on another antibiotic, on the assumption that another tick-borne infection may be present. She's also given me lab slips to have additional blood tests done for common Lyme co-infections, though she recognizes that the tests are not always accurate (which is why she'll go ahead and treat anyway). So, hopefully, I'll continue to improve, although I'll admit that I'm very scared that Lyme may cause long-term worsening of my CFS. I just have to wait and see.

Resting and waiting...something I should be used to, right?

The Power of the Blog

Just heard an amazing story on the news this morning about a mom's blog and how her readers are helping and supporting her and her family after a terrible accident. The plane crash they were in sounds awful, but the support from her readers all over the world is truly uplifting.

I needed to hear an uplifting story like that. I've had a bad couple of days - can't wait for my doctor's appointment this morning.

National Invisible Chronic Illness Awareness Week

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

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

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

School Days

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

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

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

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

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

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

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

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

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

Lyme Disease and Allergies

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

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

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

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

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

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

A House of Cards

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

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

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

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

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

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

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

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

The Waiting Game

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

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

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

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

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

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

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

More News from the Virus Conference

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

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

Anyone use NADH?

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

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

Anyone else have experience with NADH - good or bad?

Resting

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

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

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

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

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

New Research Links CFS to EBV and HHV-6

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

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

Summary from Dr. Bell

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

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

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

Post-Vacation Slump

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

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

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

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

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

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


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

On Vacation

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

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

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

Feelin' Good!

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

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

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

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

Letting Kids Be Kids

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

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

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

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

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

CFS In the Local News!

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

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

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

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

Real Strength

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

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

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

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

Happy Mother's Day!

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

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

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

Happy Mother's Day!

Down Again

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

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

Well, nothing to do but rest and wait.

Keeping Things in Perspective

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

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

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

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

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

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