Movie Monday 11/7

We had a busy but very nice weekend.  My dad and his wife were visiting from out of town this weekend.  It was good to see them, as always, a bit tiring, though they are easy guests. 

Jamie actually played soccer on Saturday!  Only the third time this season.  When he plays, he's been playing the back defensive line so he doesn't have to run as much, but the coach put him on the front line as striker for a few minutes, and he made an awesome goal!!  We were so happy for him - he was on top of the world.  Yes, he has paid for that exertion a bit, though he did make it to school today.  He's feeling crashed tonight, so we're going to watch a movie and chill out....

OK, I'm back!  So, movies...a kind and generous friend read here recently that Jamie was enjoying the X-Men movies, so they lent us a trio of X-Men movies, and we have watched two so far:

• Thursday evening, we watched X-Men, which I guess was the original movie of the series.  I didn't think I'd enjoy this, but I have to admit it's pretty good.  It's classic good guys versus bad guys during a time in the future when there is a growing population of "mutants," people born with special powers.  Some people fear all mutants and want them rounded up and locked away.  The X-Men are a group of mutants who have banded together to teach younger mutants and to try to keep the world safe and peace at hand.  It was engaging, with lots of action and adventure.
• Tonight, when Jamie decided he was too crashed to do any homework, we watched X-2, the sequel which follows the story as the lead bad guy (a mutant himself) launches an evil plot to get rid of all humans so the mutants can take over.  Some of the backstory and convoluted plot are a bit confusing, but we figured it out and enjoyed it.

Have you seen any good movies lately?

(If you are also interested in what we are reading this week, check out the Monday post on my book blog.)

ME/CFS Groups on Facebook, Part 3

So, I heard some of you were still having trouble accessing some of the existing ME/CFS groups on Facebook that I included in my first post on the subject.  I think we have worked out the problems now!

People said they couldn't find the ME/CFS - Pacing with a Heart Rate Monitor group, so I worked with the administrator of the group, and he decided to change it from a Secret group to a Closed group (with the current members' agreement) - this will still protect the privacy of its members (posts are visible ONLY to members of the group) while making it possible for people to find the group.  So, if you are interested in joining the Heart Rate Monitor group, use this link - it should (hopefully!) work now to take you to the group's page - all you will see is the group's name.  Just click on the "request to join" button, and the administrator will add you to the group.

As for the ME Mums and Dads group (for parents who have ME/CFS), the administrator decided to keep the group classified as Secret which means it doesn't show up in searches (and apparently, the link I provided doesn't work).  So, here's what we'll do.  She made me another administrator for the group.  If you are a parent with ME/CFS who wants to join this group, e-mail me at jacksonde at comcast.net (I wrote it out that way to avoid getting spammed), and we will work together to help you find the group and get added to it.

So, hopefully, that will solve the problems - sorry for the inconvenience!

The Joy of Celebrations

A few years ago, I wrote a blog post about joy and how ME/CFS has helped me find more joy in everyday things.  I planned to kick off a series of posts about things that bring me joy, and I wrote The Joy of the Outdoors and The Joy of Friendship, but then the project sort of fell by the wayside.

All of our Halloween fun yesterday made me realize that I haven't written about celebrations, which I think are a vital element of joy in any life!

I came by my love of celebration from my mother.  When I was a kid, we celebrated everything, big and small, and I loved the atmosphere of joy and festivity.  My mom was, and still is, a major party animal, so I learned from the best!  When I had kids, I knew I wanted to do the same thing for them.  My kids love our traditions of celebration, and now that we are dealing with chronic illness, they are even more important, a way of injecting joy and fun into our lives, even (especially) when things feel lonely and dismal.

Of course, we celebrate the big holidays, though we've had to scale back a bit since CFS.  We now focus on certain elements of each holiday that are the most important to us - at Christmas, that's decorating our tree together and getting together with our oldest friends for a cookie decorating/grinch watching party (we now buy premade cookie dough!).  On Halloween, our whole family gets dressed up, often with a group theme, and goes around the neighborhood trick-or-treating (I usually just hit the two nearby cul-de-sacs).  We celebrate New Year's Eve at 8 pm since the kids can't stay up late (and we used to celebrate with their grandma who had Parkinson's and also couldn't stay up late), but they love our traditions, with sparkling juice, lots of noisy confetti poppers, and caps thrown all over the driveway.

We celebrate the little holidays, too.  We always decorate the house - over the years, we've collected themed window stickers, decorations, and holiday-themed projects the kids made when they were little.  For Valentine's Day, we give the kids little treats in the morning, hang hearts with messages written on them from their door frames while they sleep, and celebrate with a simple chocolate fondue in the evening, dipping in chunks of fruit, pretzels, and graham crackers.  One year, I even put little edible groundhogs into the kids' oatmeal for Groundhog Day!

We don't need a holiday for an excuse to celebrate.  Once or twice a year, I make our favorite enchiladas and we have Mexican Night, with a colorful serape on the table and a special orange-mango fizzy drink.  We celebrate the start of summer by going with friends to play in a creek after school lets out.  And, of course, there is always a party when we visit their grandma (my mom)!

If Jamie has had a bad week (or month) and has been stuck at home for a while, I surprise him with movies from the library or a favorite treat from the local ice cream dairy or bakery.  Celebrations can be incorporated into everyday life to add an extra jolt of joy to even our restricted lives.

So, next time you are having a bad day or week or month, find a reason to celebrate and insert some extra joy into your life! 

What are your favorite ways to celebrate?

Managing a Herx Reaction

(Updated July 1, 2025) 

Well, it's a real kick in the pants when you are struggling with a disabling illness and then its treatment makes you even sicker, but that's what many people with Lyme disease have to deal with, as well as some people with ME/CFS being treated with antivirals (and sometimes, antifungals). It's called a Herx reaction, and, as we have seen with our son, it can be completely incapacitating.

What Is a Herx Reaction?
Well, for starters, the word "Herx" is a shortened nickname. Here's one of the clearest explanations I found on Lyme Disease Blog (which is, unfortunately, no longer available):

The Jarisch-Herxheimer reaction (or Herx for short) is an inflammatory response to antibiotic treatment for certain diseases (although some non-antibiotic treatments can produce the reaction). It’s also referred to as a “healing crisis” or “die-off,” meaning a detoxification of dead or dying bacteria and other pathogenic organisms in the body.

....A person with one of the Herx-causing infections has a certain number of tiny foreign organisms in their body. The number of infectious organisms can be in the thousands or millions. Each individual organism is made up of its own cell with its own internal structure and contents. If that cell dies through an attack by the immune system or an antibiotic drug, it bursts open and releases its contents. Millions of cells bursting at the same time introduces a significant amount of cellular material in the body. These spilled contents cause the Herxheimr reaction, When the spilled contents are cleared from the body, the reaction stops.

Historically, the theory has been that the reaction is caused by dying organisms releasing endotoxins.  Recent experimental research suggests that the rapid and massive overstimulation of the patient’s immune system causes the symptoms. The immune system’s job is to recognize and attack foreign antigens in the body. When dead organisms spill their internal contents, a huge number of foreign antigens become present all at once. The body reacts by releasing immune system modulators (or cytokines) (e.g., Interleukin 6, Interleukin 8, and tumor necrosis factor, among others). These cytokines are what cause the fever, chills, and low blood pressure. Either way, the body gets assaulted and fights back.

As that blog post explains further along, the phenomenon was named with respect to syphilis treatment. You may or may not know that syphilis has a lot of similarities to Lyme disease; both are caused by a type of spiral-shaped bacteria called spirochetes which can be very difficult to get rid of and tend to leave the blood stream and settle into joints and tissues. Given the explanation above and the immune system's role in a Herx reaction, it makes sense that some people with ME/CFS being treated for viral infections or yeast overgrowth also experience Herx reactions; as is typical, our immune systems over-react.

Unfortunately, we have had to become experts in Herx reactions because our oldest son has been enduring them for the entire seven (thirteen, as of 2020) years of his treatment for tick infections, though he is much better than he was and continuing to make progress. My own Lyme disease rears its ugly head every few years. Treating babesia and bartonella (two other tick-borne infections that our son has/had as well as Lyme) can also cause Herx reactions, and the immune dysfunction of ME/CFS (which we both have) just makes it all that much worse. That blog post I quoted from above says that Herx reactions can last days or weeks, but our son--and many others with both ME/CFS and Lyme--has experienced a severe worsening of symptoms that lasted many months initially and still pops up if he tries to increase his treatment or make other changes, even all these years later.

Ways to Lessen a Herx Reaction
He has been so totally disabled by Herx reactions at times (and I have been with my latest relapse of Lyme) that we have become desperate to find some way to help, so I've done a lot of research and have talked to a lot of people. Here is a list of some remedies to lessen Herx reactions, from our doctor, our dietician, various articles and experts, and other people. We use most of these:

• Adjust Dose of Treatment. Whether you are on antibiotics or an herbal protocol for tick infections or antivirals or antifungals for ME/CFS, your first line of defense when you Herx badly is to adjust the dose of your treatment. Herxing is a sign that your body can't detox fast enough, so if a Herx is severe or lasts more than a few days, you should always back off on the dose or even take a bit of time off completely and then restart at a lower dose--see below for details.
• Burbur, parsley, and pinella drops or a burbur-pinella combination: the links are to the cheapest source I could find & there are discounts if you buy multiple bottles (they're all the same, recommended brand). You can use 8-10 drops (follow instructions on the labels) of each in about 4 oz. of water, wait one minute, and drink. Do this every 2 hours if needed. Some sources say that you can take these every 15 minutes and they will eliminate your Herx within an hour!
• Chlorella. Our son took this daily for many years. Take 6-10 of the tiny green pills, up to twice daily, but it's best to start with a low dose and gradually build up. Too much chlorella can cause stomach cramp, nausea, and diarrhea, especially in the first two weeks (as I discovered myself!). But it seems to help a lot, so I will continue to use it but will be careful with dosing. I also recently discovered these combination tablets that contain both chlorella and spirulina (another known detox remedy).
• Silymarin, the effective ingredient in Milk thistle.  My son and I already took it for both methylation support and glutathione, but I increase the dose when he or I is Herxing. It helps the liver to work more effectively, filtering out toxins and is essential for anyone who takes a lot of supplements and/or medications. Take 500 mg 2-4 times daily for Herxing or 250 mg twice a day for maintenance. This brand (known for good quality, too) is cheaper, but each capsule only has 100 mg, so you'll have to take more. You can also get milk thistle supplements that are very cheap, but be aware that they won't have as much of the active ingredient, silymarin.
• Curcumin.  Our dietician recommends Meriva Soy Free and we like the 500 mg capsules though it also comes in a lower dose of 250 mg (this brand is in a form that is well-absorbed). This has been life-changing for our son! Our Lyme doctor and dietician said you really can't take too much. Curcumin, the main component of the spice turmeric, is a potent anti-inflammatory, so it has positive effects on pain, the nervous system, GI issues, and even the immune system.  It has no negative effects, so our son takes 1-2 of the 500 mg pills up to 3 times a day (as have I recently also). As an anti-inflammatory, it is especially helpful for joint pain, though it has many other benefits, too. Bonus: Many studies have shown curcumin to boost mood overall and help antidepressants to be more effective in those with depression!
• Boswellia.  This is a newer one for us, another herbal supplement with anti-inflammatory properties (so, again, great for joint pain). Lyme specialists recommend 1-2 capsules up to 3 times a day, before meals. We've only just recently starting taking it, but both of us think it is helping. Several studies have shown that curcumin and boswellia taken together are even more effective.
• Glutathione. This is an essential nutrient in our bodies that helps with immune function, detox, the nervous system, energy production, and much more. Everyone with ME/CFS or Lyme should be taking glutathione and/or working to increase their body's production of it, but it's especially important for Herxing. Of the forms of glutathione you can administer yourself, most effective are glutathione intramuscular injections or nasal spray. Next best is liposomal glutathione. This post on increasing glutathione explains all the different forms and how to get them, as well as glutathione precursors and ways to help your body make more on its own. When my son's Herxing got even worse in early 2020, he started weekly glutathione IVs, which help tremendously and have allowed him to finally increase his dose of treatment for Lyme and bartonella after being stuck at a tiny dose for a very long time.
• Extra soluble fiber (see Help Eliminate Toxins below).
• Water (cold or hot) with lemon juice. This helps the body to become more alkaline, which is best for the immune system and the gastrointestinal system. It's a great way to start the day and can help with digestion, too.
• Alka-Seltzer Gold. This (be sure it is the Gold type) also helps to make the body more alkaline. It can be used on its own or with other supplements (see Help Eliminate Toxins below).
• Dry Brushing. This became trendy recently in beauty magazines, but it can also help with detox. You use a brush on your dry skin (there are lots of articles and videos online for how to do this and what direction to brush, etc.), before a shower or bath (see caution below) to stimulate the lymphatic system to help your body detox more effectively. I have found that if I'm already Herxing badly, dry brushing can temporarily make it worse (I guess by moving more toxins out into the bloodstream), so use with caution and be ready for a worsening.
• Epsom salt baths or foot baths. These magnesium-rich salts are a well-known way to soothe aching muscles or joint pain and can help with detox. However, people with ME/CFS (and many with Lyme, MCAS, or fibromylagia, too) have to be careful that the bath isn't too warm, especially if they have not yet effectively treated Orthostatic Intolerance (OI). Bath temperature should be kept below body temperature to avoid triggering a bad OI response. If you feel worse after a hot bath or shower, you have OI.
• Heat treatments, like sauna and hot tubs. These also help your body get rid of toxins, but they should be avoided by anyone with ME/CFS or OI because the heat dilates blood vessels, making OI much worse and making you feel very sick. 
• Help your body to eliminate the toxins. One way to help your body with this detox process and manage the Herx reaction is to help your body eliminate the toxins quicker. You want to help clear out all the dead bugs and their by-products. Our dietician recommended the following on alternate days for 2-3 weeks or until you feel better, in between meals and meds (be sure not to take these close to food, medications, or supplements because they will sweep out everything in its way, not just the bad stuff. Also be sure you can get to the bathroom!):

  • Day 1: 2 charcoal capsules + 2-3 Magnesium citrate capsules

  • Day 2: 1-2 citrus pectin capsules + 2 Alka-Seltzer Gold or 1 Bicarb Formula

  NOTE: Do NOT use Magnesium Citrate as a source of magnesium supplements--it (and also magnesium oxide) is very poorly absorbed, which is why is it works for this purpose! For daily magnesium supplements (essential for pain, sleep, nervous system, cognitive function, and more), use magnesium malate and/or magnesium-l-threonate instead).
  

Adjust the Dose
None of these things helped our son very much at first. No matter what we did, he was still completely incapacitated while on antibiotics. Lyme experts say that there is no benefit to just enduring a severe Herx reaction; in fact, if your body can not clear the toxins, then you aren't making any progress against the infection(s). With this in mind, you need to find the optimal dose where you ARE making progress but your body can detox properly and you are not incapacitated.

Even at a low dose, our son was still severely ill, so we had to go VERY slowly and gradually with the antibiotics in those early years. With doxycycline, he went completely off of it until the Herx symptoms cleared and he started to feel better (for him, 5-7 days), and then he began again, taking just 1 pill (100 mg) every 3 days (normal dose is 2 pills each day).  Once he was able to tolerate that fairly well, we increased it to one pill every two days, and so on. It took him over 18 months to work up to a full dose.

So, your first line of defense with a severe Herx lasting more than a few days should be to reduce the dose of whatever you are taking to kill the infections (antibiotics, antivirals, or antifungals, whether prescription or herbal) until the Herx is tolerable. As I said above, it does no good to suffer through a severe Herx: "no pain, no gain" doesn't work here! You need to give your body a chance to keep up with detox and get rid of the by-products of your treatments. My son switched to a 100% herbal protocol many years ago for his tick infections, but he still reacts strongly to the herbal treatment. You may have to go super-low dose, as I described above for my son, taking only 1 pill every 3 days (or for him now, just 1 drop of the herbal blend a day when 30 drops a day is standard--he started with just 2 drops each week), but you have to find the "sweet spot" for you, where you can tolerate the treatment and still function, using the Herx treatments above to help. Then, as you adjust and feel better, you can very slowly and gradually increase the dose, but again, only as much as is tolerated. Many Lyme specialists say to only increase the dose when you are feeling good--if you are still feeling bad, it's a sign that your body is not yet keeping up with detox. In this way, you will make slow but steady progress and still be able to function.

My son still over-reacts to his treatment for tick infections and still Herxes badly sometimes, and my own Lyme disease has popped back up after several years of remission, so my attention has again been turned to managing a Herx reaction, as I am Herxing much worse this time than previously. I recently discovered that we can take many of the Herx supplements far more often than we thought, so I have updated all of the information in this post and included some dosage guidelines for each item, as well as adding a few more to the list. Hope this helps!

What works best for you for Herx reactions?

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

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Movie Monday 10/24

Well, last week was another in a long string of rough weeks.  Jamie was completely incapacitated again and missed another full week of school - that's 16 days since Sept. 1.  The good news is that he went back to school for a partial day today (though only because we stopped his Lyme meds again).  I talked to the Lyme doctor today and think we have a plan that might allow him to move forward in his treatment without being so totally crashed.  We'll see - I'll keep you posted and will write more about our plans later this week, as I finish figuring it out myself!

So, with him home and so horribly crashed last week, he watched a lot of movies on TV.  With Halloween approaching, a bunch of channels were showing back-to-back horror movies, so he watched a bunch of those and scared himself!   I'll try to remember some of the movies he watched (I was in the room to keep him company but trying to get some tiny bit of work done!):

• FX channel was showing non-stop scary movies last week.  I don't remember all the titles - some were just slasher films.  Jamie watched Perfect Stranger with Halle Berry, a good thriller that Ken and I had watched before with a great twist at the end. 
• I came home from Craig's soccer game to find Jamie totally freaked out after watching a TV series, American Horror Stories, that he said was really scary.  He swore he wouldn't watch it again but then amended that the next day to say, "only during the day when someone else is home!"
• He wanted me to watch Shutter with him, a spooky ghost story he'd seen before and really liked, about a newlywed couple who move to Japan and start seeing ghosts.  He was right - it was good.  I prefer ghost stories to slasher/horror-type movies.
• As a family, we watched some more episodes of our favorites on DVD, Bones and The Big Bang Theory.  By evening, Jamie was too wiped out for a full-length movie.

Have you seen any good movies lately?  Any spooky suggestions for Halloween season?

ME/CFS Groups on Facebook

OK, I think we have found a solution to the problems you've been having accessing a couple of groups on Facebook.

As I posted last week, there are two Secret groups on Facebook for people with ME/CFS - ME Mums and Dads and ME/CFS - Pacing with a Heart Rate Monitor.  Apparently, the links I posted here didn't work, I think because they are Secret groups (that just means the groups don't show up in searches on Facebook; the new groups I set up for teens and their parents are Closed but not Secret, meaning no one can see the posts unless they are members, but they do show up in searches).  Sorry about the problems - the links work fine for me because I am already a member of both groups!

Anyway, after much debate and trial, we can't seem to find links that will work, so it appears the only way to get into one of these groups is through someone who is already a member.  So, let's try something different:

If you are interested in joining the Pacing with a Heart Rate Monitor group, you can send a Facebook message to either Barnaby Fotheringham  or Lee Lee Ingram, who are both administrators of the group.

If you want to join ME Mums and Dads (for people who have ME/CFS and are parents), you can send me a Facebook message at Sue Boulter Jackson.  Just one thing about this approach, and I hope you won't think me rude!  I generally do not "friend" people unless they are family or close friends that I know in person.  I have made a few exceptions over the years, for people I have gotten to know very well online, but generally, with too many friends I don't actually know, it just becomes too overwhelming for me to keep track of.  I do, however, actively participate in all of these Facebook groups, including our two new ones for teens and parents of sick kids.  Believe me, between my three blogs and all of these Facebook groups, I have my hands full!  I do hope you understand and don't think me rude if I don't accept your friend request.

Ok, let's try it this way - hopefully, those of you interested in joining these two groups will be able to now. 

Cancer Drug May Help ME/CFS Patients

Just wanted to take a moment to tell you about some very exciting news.  A recent study in Norway showed that a drug used to treat cancer, Rituximab, improved symptoms in 10 out of 15 ME/CFS patients.  Two of the patients were completely recovered and able to go back to work!  Here's an article from New Scientist that provides a good overview of the study. Apparently, the drug works by destroying B cells in the immune system...which makes sense since immune system dysfunction is such a central part of ME/CFS.

We should know by now not to get TOO excited over preliminary research, but this is a good starting point that will hopefully be followed up by some similar studies here in the U.S. and elsewhere.  The great thing is that this is a drug that is already on the market, approved to treat lymphoma (they figured out it might help with ME/CFS when they treated a lymphoma patient who also had ME/CFS and he got much better), so if it does work, it is immediately available.

On another topic, the two new Facebook groups for teens with CFS and their parents are both going really well.  The teen group has 10 members so far, and the parents' group is already up to 19 members, with lots of great discussions going on at both.  So, if you fit it into either of these categories, please join us!

And, I am aware of the problems with the links I posted to the ME Mums and Dads group (for parents who have CFS) and the Pacing with a Heart Monitor groups.  The problems are due to the fact that these are Secret groups (the two new ones I set up and the LDN group are Closed groups but not Secret), and I am working with the administrators of both groups to try to figure things out.  As soon as we do that, I will post new links.  A huge thank you to those of you who let me know the links weren't working!!  They work fine for me - because I am already a member of both - so I wouldn't have known of the problems without your help.  Stay tuned!

Movie Monday 10/17

Well, we did manage to have a nice, relaxing weekend.  Jamie is still crashed from over-doing on Saturday (playing soccer, watching a HS football game, and going to his dance), but I do think this is a simple case of over-exertion and am hoping he will recover soon.

We didn't watch many movies last week - mostly just TV shows - but Jamie and I watched one on Friday night:

• We watched X-Men Origins - Wolverine which Jamie had seen before.  He really wanted to see it again - I wasn't too excited about it but gave it a try.  I knew nothing at all about the X-Men before this movie, but apparently, it is the story of how Wolverine got his start as a superhero.  I have to admit, it was a pretty good movie - lots of action, of course.  And I admit, I am now a bit curious about the other X-Men...

How about you - have you seen any good movies lately?

(If you are interested in what our family has been reading this week, check out the Monday post at my book blog.)

New Online Groups for Teens and Parents!

For weeks now, I've been meaning to set up a couple of new Facebook groups: one for teens with ME/CFS (and similar illnesses) and another for their parents.  I have really benefited from participating in other ME/CFS-related Facebook groups, but there didn't seem to be anything available for these two groups.  I finally did it this morning, after recent events made it feel urgent.

So, first the links and then some details:

Click here for Teens with ME/CFS and Related Illnesses (members are between ages 11 and mid-20's).

Click here for Parents of Kids and Teens with ME/CFS and Related Illnesses (open to parents of dependent adults, too, and the range of illnesses includes tick infections, EDS, POTS, and more).

Note that the Teens group is JUST for young people, and the Parents' group is ONLY for parents or other adult caregivers of young people.

I get e-mails and blog comments every single week from teens and from parents who are desperate to connect with others in the same situation, but they don't know anyone else in their local area.  In the past, I have addressed these notes individually, corresponding with people and trying to set them up so they can correspond with others.  But I can't do it all, and with Facebook groups, it is easy to find lots of other people in your same situation.

Many of you will remember that I set up a local group here in Delaware last year for kids and teens with ME/CFS and their families.  This local group (with families from NJ, PA, MD, DE, and even NY) has been a huge success, and we have all benefited by getting to know each other and having our own little support network.  Our families get together for casual picnics and gatherings, the kids have all become great friends, and the moms often get together for lunch. Our local/regional group, #MEAction Delaware, also has a Facebook group (at the link) and covers the whole region: DE, PA, NJ, MD.

A couple of weeks ago, when our older son was doing really badly, I sort of hit bottom emotionally and just felt like I couldn't take this any longer.  I was sitting in a medical facility with him, waiting (hours) for his IV, and I was ready to burst into tears.  I opened my laptop and thought, "Who can I talk to who will understand?" I didn't want to burden any of my healthy friends or family - it just makes them feel bad.  Then I realized I could reach out to our local group of moms.  I sent an e-mail, explaining how bad things had been and how I felt like I was losing it.  Within moments (literally), the nurse popped her head into our room and said, "Someone is here to see you - can I bring her back?"  It was one of the moms I'd just e-mailed!  She'd been in the grocery store next door when she saw my note on her phone and immediately came over to see us.  She brought me into the hall, gave me a big hug and let me cry, then ran back to the store to get our son some Gatorade.  In addition, within 10 minutes, I had e-mails from all the other moms, telling me they understood and offering all kinds of support.  I was totally blown away.  I want other parents to have this same kind of support.

As for teens, our son went to his Homecoming Dance last night at school.  He lasted only 2 hours and came home in tears.  He wrote this poem this morning and posted it on his regular Facebook page:

"How many times can I break till I shatter." -O.A.R

Trying to scream out the frustration swirling through my mind but I lack the energy.

My last high School Homecoming and

I'm trapped in my own body.

Oh how I wish to be free,

... the things I'd do

the person I'd be

If only I were free.

 And I realized that he needed the same kind of support, even when he's not able to get together physically with our local group.

SO!  I set up two new Facebook groups this morning, one for teens and one for parents.  Turns out it's pretty easy.  If you're not familiar with how these work, here's a quick overview:

You do have to join Facebook to participate, but most teens and many parents are already on there anyway.  Both new groups are Closed groups, which means that no one can read what's posted in the groups unless they are a member, postings will not appear in search engines, and I will approve the members.  Once you join a group, you can post on the wall, upload photos, share links - all the stuff you would normally do on Facebook, except that no one will see it except the members of the group.  You do not have to be "friends" with everyone else in the group - just being members of the same group allows you to participate.  This has been great for me because I limit my Facebook friends and my regular page to just family and close friends (otherwise, it's too much for me to keep up with), but I love to interact with other people with ME/CFS in various groups (see below).

So, once again, here are the new groups:

Click here for Teens with ME/CFS and Related Illnesses (members are between ages 11 and mid-20's).

Click here for Parents of Kids and Teens with ME/CFS and Related Illnesses (open to parents of dependent adults, too, and the range of illnesses includes tick infections, EDS, POTS, and more).

Note that the Teens group is JUST for young people, and the Parents' group is ONLY for parents or other adult caregivers of young people.

I specifically used the term Teens, but younger kids are OK (Facebook's official guidelines say you have to be 13 to join, but I know younger kids sometimes do - we let our youngest join at 12).  And slightly older is OK, too, especially for those still living at home who may feel younger than their actual age (I know how CFS can affect kids!)  

There is already an existing page on Facebook for ME/CFS for Young Adults (most members are ages 16 - 35) and the #MEAction page includes a group for #MEAction - 25 and Under.

The two new groups encompass not just those officially diagnosed with ME/CFS but also kids, teens, and young adults with related and similar illnesses, like OI, POTS, Lyme disease, fibromyalgia, and EDS.

There are other ME/CFS groups on Facebook that I joined and participate in regularly, including:

• ME Mums and Dads (that's for people who have ME/CFS and are parents to children of any age, even grown children, focused on the challenges of being a parent when sick)
• ME/CFS - Pacing with a Heart Monitor, a very valuable group for those using a heart rate monitor to try to avoid crashes; many members are also trying various OI treatments to reduce heart rate. There is sometimes a wait list to get in.
• The #MEAction Network lists over 100 groups on its page! There are groups by location, by occupation, by age, and all sorts of others - you can find a group that fits your needs, too.
• Myalgic Encephalomyelitis Global is a general information & support group for all ME/CFS patients, with a large, international membership.

So, please use the links above to join our new groups or some of the other groups on Facebook.  It's a great way to interact with other people who totally "get it."  Of course, please continue to read and comment on blogs, too! And you can follow THIS blog on Facebook - my Live with ME/CFS Facebook page has an active and supportive community on it.

Time Out

I logged on to write a post called "Taking Care of Me," then realized I already wrote one with that name, just a few months ago!  As I said in that earlier post, I seem to have to keep learning the same lessons over and over again.

As I've mentioned here a lot recently, I've been feeling exhausted, overwhelmed, and frantically busy.  I've had several mini breakdowns lately, including Thursday night (as I wrote here), when I said, "I just can't go on like this!"  Well, I finally listened to myself.

I am canceling my plans to go to the NJ CFS Association's annual Conference on Sunday.  Last Sunday, we went on a 4-hour college visit, and it took me most of the week to recover from that.  I just couldn't stand the thought of feeling so totally wiped out for another week, and the conference would be an all-day 11- or 12-hour ordeal (I live about 2 hours away) that totally wiped me out last year.  As soon as I made this decision, I felt an immense sense of relief, so I know it is the right thing to do.

The ironic thing is that I am doing much better health-wise and am able to do more these days, but I don't feel much better on a day-to-day basis because I am pushing against my limits constantly.  I have let my activity and stress level increase along with my stamina, so I am in no better shape overall than before.  As I said, I just can't go on like this anymore.

I feel lately as if my life is nothing but obligations and responsibilities.  When I look back over the past week (or any of many past weeks), I can't see anything that I did for myself, for fun.  My time is filled with must to-dos, and the pressure is starting to get to me.  I realized yesterday that there are lots of things that I used to enjoy, that I no longer seem to have time for: reading magazines, watching movies, reading my favorite CFS blogs, camping with my family.  Some of these things are trivial, some are important, but the point is that they are things I enjoy that I no longer have enough time for.

I set goals every year for myself and try to keep track of them on a weekly basis (otherwise, I write the list and forget about it until the end of the year!), and some of the items on my list I am failing miserably at.  For instance, I have recognized this problem in myself before, so one of my weekly goals is "Do something fun for myself."  Whole months go by when I can't think of a single thing I did toward this goal!  Same with "Go outside for 10 minutes a day," "Meet Ken for lunch," "Meet with friends," and "Do something fun with the kids."  See the pattern?

An online friend of mine includes progress toward her goals on her blog, and I was stunned when I saw that almost all of her goals were things for herself: learning new things, making time for things she enjoys, etc.  I tried to learn from her and added a new goal to my list: "Take one mental health day each month for myself."  I thought this was a brilliant, mind-blowing idea - to take a day off all to myself.  I tried it in May and was surprised to find that I had trouble thinking of what I could do with a day off.  Taking away all productive to-dos, I didn't know what to do with myself!  I did end up enjoying the day but have yet to find time for another one!

So, I am rededicating myself to trying to find some balance in my life.  I realize that I need to take better care of myself (another goal I am doing terribly at is "Rest when symptoms flare").  I have a tendency to spend all of my time and energy doing things for other people. I know that some of this is unavoidable.  I am, after all, a wife and a mother to two teen boys.  In addition to focusing on myself and my family, I also recognize that it is important to me to help other people, and I want that element in my life.  However, I am realizing that I can help far more help to people if I'm not constantly exhausted and overwhelmed.

THIS time, I am determined not to forget how horrible it feels when I am so frantically busy and overwhelmed.  THIS time, I pledge to take better care of myself and not get to the point where I am so wiped out that I am short-tempered and miserable.  THIS time, I am committed to take time just for me and discover what makes me feel relaxed and happy.

What do you think?  Will I be ranting and writing the same things a few months from now?  It's almost like another sickness - my need to be constantly productive, always accomplishing something.  I mean, granted, there is a LOT to do around here that often goes undone - it seems we are always behind.  But my husband doesn't have trouble relaxing or taking time for himself.  Maybe it's a flaw in our female psyches, this need to get everything done.  I thought CFS had cured me of much of this destructive drive to do everything, but as my health has improved a bit, it has snuck back up on me.  I know the computer is a big part of my problem.

I need help!!  Do you have these same problems?  Do you have any ideas on how I can learn to relax and take time for myself?  Any ideas of how to remind myself of what's important in the midst of chaos?

OK, I am logging off now (I swear!) and spending a relaxing evening with my family (really, I mean it!).  Enjoy the rest of the weekend.

Best Kids in the World!

After another long day of cleaning, cooking, laundry, driving, picking kids up, and doctor's appointments, I plopped on the couch in exhaustion tonight (after first filling 13 weekly medicine boxes), close to tears and said, "I can't keep this up!"

Both of my sons, at different times this evening, offered to get themselves up and ready in the morning and walk to the bus stop (a fairly long walk) so that I could sleep in tomorrow morning.  Then Jamie said, "Mom, you are awesome!  I really don't know how you manage to do all the things you do.  It is truly amazing."

Well, that is one positive side effect of living with chronic illnesses - my sons are very empathetic and caring.  Don't I have the greatest kids in the world?

Latest on XMRV and WPI

Ugh...I've been procrastinating on writing this blog post.  By now, most of you have probably already heard most of this news.  Honestly, we've just been in crisis mode here for the past month (or more), and I have been too wrapped up in taking care of Jamie and researching what might help him to have any mental energy left for summarizing the complex goings-on in the ME/CFS research world.  But I feel guilty for not keeping you up to date, so I will attempt to write a brief review of the latest news.

The latest XMRV study was published a few weeks ago.  Bottom line is that they were unable to reliably detect XMRV in ME/CFS patients.  Here's a good summary from the New York Times.  The reason this study was extra-important was that it was a multi-lab study; 15 previously-found-positive samples and 15 previously-negative samples were sent, blinded, to nine different labs, including Dr. Mikovitz's own lab at WPI and VIP Dx, the lab that has been selling and running commercial XMRV testing.  None of the labs was able to reliably find XMRV in the samples.  Only two labs in the entire study found any positive XMRV results at all, and none of the results was reproducible.  In some instances, even the same lab came up with different answers each time it ran the same sample.

Most alarming, VIP Dx could not get reproducible results.  This means that the same sample might sometimes come up positive and sometimes show negative.  That lab has now been shut down; there is no longer a commercial XMRV test available.

In the aftermath of this study, WPI (The Whittemore Peterson Institute) let Dr. Mikovitz go, as explained in this Wall Street Journal article.  In public statements, Dr. Mikovitz has said she is still committed to XMRV research and still has some grant money.  She is currently looking for another institution to sponsor her work.  WPI says, as stated in the above article, that they remain committed to ME/CFS research and specifically, research into retroviruses' role in ME/CFS. 

So, what does this all mean?  Is there really an XMRV?  Is it involved at all with ME/CFS?

From what I've read, it seems less and less likely that XMRV is the culprit in ME/CFS; however, I don't think anyone can conclusively say that for sure (though some have!).  XMRV could be just the result of lab contamination, as some claim, or it could just be something that is constantly changing and is therefore very hard to reliably detect.  The big NIH XMRV studies involving hundreds of patient samples are still in progress.

If you had your own blood tested for XMRV, you can't believe the results, whether they were positive or negative.  Even Dr. Mikovitz agrees with that; apparently, she recommended VIP Dx be shut down earlier.  So, what about the people who tested positive and have improved on anti-retroviral drugs?  Well, there are three possible scenarios: XMRV is indeed present but can not be reliably detected yet or there is another retrovirus present that has not yet been identified or the drugs had some other positive effect for reasons not yet understood.  A lot of "not yets" in there, huh?

So, yes, this is a bit of a setback for us, but I don't believe we are back where we started, as some have suggested.  For one thing, XMRV has brought unbelievable, tremendous attention to ME/CFS.  Before XMRV, can you even imagine the NYT, WSJ, Science, Washington Post, BBC, and other major news media all covering a story related to ME/CFS?  Now they routinely cover new studies and new information.  We are finally getting some of the attention that this debilitating illness deserves. 

With that attention comes interest (and funds!) for research.  XMRV opened the door for all sorts of new research possibilities into the causes of ME/CFS, with a focus on infectious agents.  Negative studies are absolutely necessary for science to move forward, in any field, and provide information that is often just as valuable as positive studies.  Scientists in many fields and at many different institutions now seem eager to build on what's been done and delve into the puzzle that is ME/CFS.  And that is a far cry from where we were just 5 years ago.

Changes in Lyme Treatment

Once again, I'm sorry for the long silence.  Last week was another very tough one - Jamie missed another four days of school - and I had a mini breakdown Friday evening when we ended up spending 4 hours at the local clinic waiting for his weekly saline IV.  It's just been a very difficult and challenging time for us lately.  Things are looking up a bit this week, though, and I thought you might be interested in what's been going on.

Jamie and I went to see our Lyme doctor in NJ last Thursday (part of the exhausting build-up to the breakdown!).  Jamie had to lie down in the backseat on the way there, and I had to do all of the driving - I had gotten used to his help!  I emphasized to the doctor just how horribly incapacitated Jamie has been.

The doctor decided to stop Flagyl, Jamie's current treatment for babesia and Lyme.  He was only taking a 1/2 pill a day (typical dose is 2-3) and was still so sick he couldn't even get up off the couch.  The doctor said it wasn't doing him any good right now because it was obvious that his body wasn't able to clear out the toxins (i.e. dead bugs) in his bloodstream (that's called a herx reaction), so it would be better to just quit for now, try something else, and maybe go back to the Flagyl at a later date when he can handle it better.  So, now he has prescribed doxycycline, at a relatively low dose to start with (half what I take), and then adding Plaquenil two weeks later.  This will target the Lyme most directly.  The doctor says the strategy with multiple infections is to target whichever one has the most prominent symptoms.  Lately, Jamie has had very severe joint pain which is a primary characteristic of Lyme (he was on the Flagyl to target babesia because months ago, he had severe night sweats).

So, that's the new plan.  Jamie stopped taking Flagyl last Thursday and has now been off all antibiotics for 5 days.  The result?  He's feeling much, much better.  He went back to school for a partial day on Monday and went all day Tuesday and is there again today.  This is such a huge relief to all of us!  Of course, he needs to start on doxycycline now which will almost certainly set off another herx reaction...but we are hoping this time it will be milder and more tolerable.

I spent all weekend online, researching how to lessen herx reactions and how to improve the methylation cycle.  The Lyme doctor mentioned this might help Jamie, and I told him I knew that was a problem with people with CFS, too, and that a couple of doctors had developed protocols for treating it.  Here's an article about treating the methylation cycle and a Q&A about using the simplified protocol.  The problem is that the doctor who wrote the Q&A says that people with Lyme should first get rid of their infections.  That's a real catch-22 because part of the reason Jamie can't get rid of his infections is because this process isn't working properly in his body.  So, we may try adding just one or two of the supplements suggested instead of the full protocol.

It's horrible to think of seeing Jamie suffer again, so we've decided to give him a short break off the antibiotics, to allow him to catch up at school and maybe even go to his Homecoming dance next weekend...but then. we will need to start the doxycycline and see what happens.

I would greatly appreciate hearing from anyone who has experience with the methylation treatment protocol or with taking a break from antibiotics during Lyme treatment.  It's so hard to know what are the right things to do sometimes.  For now, we are just trying to take things one day at a time, as always, and enjoying this brief good period.

Parenting a Child with ME/CFS

Is there any worse pain for a parent than seeing your child suffer?  It just tears your heart apart, especially when there is nothing you can do to help.

As you know, Jamie, our 17-year old son, has been going through a very difficult time lately, probably due to reactions from his Lyme and babesia treatment.  He missed the entire week of school last week.  He finally started to perk up a bit on Saturday and Sunday, enough that he was able to do some homework and even have friends over for a couple of hours each day.  So, he made it to school on Monday, but he came home feeling a bit worn out and with a headache.  By the time he came downstairs for dinner, he looked (and felt) terrible - severe headache, sore eyes, exhausted again, with awful joint pain and achiness.  By bedtime, he was just sobbing, finally releasing all his frustration and grief.  He said to us, "I'm missing out on everything!"

Our hearts just broke...again, as they have over and over during the past seven years.  We comforted him as best we could and helped him get ready for bed, but it all felt so useless.  It just feels so unfair that our wonderful son should have to suffer so much.  He's such a good kid (young adult, really) - kind and caring, loving life, a good and dedicated student. 

I do understand that we are fortunate in many respects - that medication has helped him so much in the past 5 years and allowed him to go to school, that his younger brother is doing so well, that we have each other and so many loving friends and family.  I also know that some of you reading this right now have kids in even worse shape, so believe me, I'm not complaining.  I just needed to express this grief I'm feeling, and you are the only ones who understand.  I can't share too much of this pain with friends and family.  It just makes people feel uncomfortable.

I believe wholeheartedly that things will get better, and we are taking many steps to try to help him improve and get through this difficult period.  That is my nature - to work toward improvement and to be optimistic for the future.  But it hurts so much right now.

He's doing a bit better this afternoon, still not able to go to school but certainly not as bad as he was last night.  No way around it but through it, right?

Movie Monday 9/26

Despite such a rough week last week, we ended up having a very nice weekend - just the right balance between getting stuff done and enjoying some quiet family time.  Jamie was feeling a bit better Saturday and Sunday and was able to have friends over for a couple of hours each day, so that perked him up quite a bit.  He still needed a good bit of downtime, so we took advantage of that and watched some great movies:

• Friday night, we all watched Limitless, about a very cool sort of sci fi concept.  A newly developed pill allows the person who takes it to use ALL of his/her brain (instead of the 20% scientists estimate we normally use), which results in some amazing brain power!  The main character, played by Bradley Cooper, becomes very successful taking the pills but gradually discovers there's a price to pay.  We all enjoyed it, and Jamie and I agreed that CFS is like the complete opposite of taking that pill!
• I went back to Redbox Saturday night, and we watched Source Code, another movie based on a very cool sci fi concept.  Jake Gyllenhaal is trapped in a loop, replaying the same 8 minutes over and over again, to try to prevent a terrorist from setting off a huge bomb on a train.  It's like a fast-paced, high stakes Groundhog Day.  We all loved this one, too - great suspense.
• Ken and I watched Adventureland after the kids went to bed and really enjoyed that one, too.  Set in 1987, recent college graduate James (played by Jesse Eisenberg of The Social Network fame) is forced to return home to Pittsburgh for the summer when his trip to Europe falls through.  He's not only stuck with his parents but also with a rotten job, manning the carnival games at a local amusement park.  The only thing that saves his summer is his pretty co-worker, played by Kristen Stewart, but things with her are complicated.  I loved the setting, the time, and the music (I graduated in 1987, too!).  There are funny moments in the movie, but it's also got some depth.  Lots of fun.

Have you seen any good movies lately?

How About Some Good News for A Change?

I don't know about you, but it's been another rough week around here.  Craig was home sick two days, and Jamie has been severely crashed all week and missed all five days of school.  I'm doing OK, but we're all feeling bad for Jamie.

So, when I heard some wonderful news yesterday, I wanted to share it with you.  One of our own has recovered!!

Many of you may remember Lori, the mom who blogged over at Living Chronically about her daughter's journey with ME/CFS and celiac disease.  Well, that journey is over now!  Jessica is well - completely and truly well - and is busy attending college and living the life of a happy, healthy young woman.  She has no symptoms, she can do anything she wants without crashing, and she no longer takes any medications at all. 

I talked to Lori about what helped and how she got to this point.  As is usually the case, it's impossible to tell and was probably a combination of things, including a measure of good luck.  Some of the treatments Jessica used that seemed to help with symptoms included:

• Treating sleep dysfunction and headaches with nortriptyline,
• Treating pain with Lyrica,
• Treating Orthostatic Intolerance with Florinef (Jessie was one of those kids who used to think it was normal to feel dizzy and black out all the time!),
• Lots of vitamins and supplements, based on bloodwork, including D3, B vitamins, multi-vitamin, fish oil, and CoQ10.

In addition - and perhaps most importantly - Jessica has celiac disease and is now on a gluten-free diet.  They suspected it for years and had tried gluten-free before, but she was officially tested and diagnosed in 2008 and stayed on a strict gluten-free diet after that.  Her symptoms didn't magically disappear as soon as she returned to gluten-free, but she has gradually improved over the years to where she is now.

They visited the Hunter-Hopkins Center in Charlotte, NC, and many of the treatments listed above came out of that.  Jessica was officially diagnosed with ME/CFS in 2005, so it's been a long and difficult process.  At one point, she had to quit attending school and finish high school online.

So, recovery IS possible and it DOES happen.  Dr. Bell's studies on kids and teens show that people who get ME/CFS as kids are more likely than those of us who got sick as adults to eventually recover, though I've posted stories here before of adults who have recovered as well.  I hope that hearing about Jessica's recovery inspires you and brings a smile to your face - not only in happiness for her but also in hope for all of us.

Movie Monday 9/19

Rough day...all three of us were down and out today.   Jamie played soccer on Saturday for the first time since spring - just three 10-minute periods, but that was enough to crash him.  Craig slept over at a friend's this weekend and forgot to take his Florinef...then forgot it again Sunday morning!  Plus, I think allergies are bothering him, too.  As for me, I've just been doing way too much for way too many days in a row - very achy today.  At least my husband is back home now, after a week away.  That helps!

Not much time for movies last week, and the kids were still totally engrossed with the TV series on DVD they've been watching most of the summer - Bones, The Office, Taxi, and their most recent obsession, The Big Bang Theory.  I did treat myself to one movie:

• After my exhausted kids went to bed early on Saturday night, I watched Remember Me starring Robert Pattison and adorable Emile de Ravin.  Annie over at It's Time to Get Over How Fragile You Are recommended it, but she also warned me it was really sad.  She was right on both counts!  I loved this movie; it's an in-depth character study of two people trying to recover from tragic losses in their lives who find each other.  Despite its sad moments, it's really a movie about the healing power of love and family.  Thanks for the tip, Annie!
• While away last week, my husband watched a couple more discs from the series The Pacific.  He watched Band of Brothers on previous trips and has really enjoyed both series set during World War II and produced by Tom Hanks.

Have you seen any good movies lately?

(If you are also interested in what we are reading this week, check out the Monday post at my book blog.)

New ME/CFS Research Initative

Sorry for being so silent lately.  It was another insanely busy week here, with all the usual culprits (school, soccer, medical appointments, etc), plus my husband was out of town all week, so I was getting the kids to all their commitments on my own.  Also, my mom was visiting, and she and I hosted our book group (a wonderful, kind neighbor actually held it at her house for us; we just provided refreshments and book choices).  Anyway, it's just been very hectic.

But today I read such amazing, exciting news that I had to try to find time to share it with you!

A brand-new non-profit organization has been started specifically to fund and conduct ME/CFS research!  The Chronic Fatigue Initiative (I know, the name is a bit cringe-worthy, but read on), headquartered in NYC and privately funded, has initial plans for $10 million in ME/CFS research between now and 2014.  No, that was not a typo - $10 million!

Take a look at their website at the above link to read more details about their plans.  I was skeptical at first (it sounds too good to be true!), but their list of well-known CFS researchers participating convinced me.

The Wall Street Journal (and our good friend there, Amy Dockser Marcus) published a blog post yesterday with details about the new initiative.

Exciting news, isn't it?  So, raise a glass of grape juice tonight to celebrate the new opportunities and discoveries to come!

Movie Monday 9/12

Is it early enough in the morning to still count as a Monday post?  Whew, yesterday was just non-stop running, and I was pretty badly crashed.  Feeling better this morning, though, thanks to a good night's sleep.

We enjoyed a couple of movies this weekend:

• Ken and I watched The Lincoln Lawyer Saturday night - first time in a long time we've had a chance to watch a movie on our own!  We are both big fans of author Michael Connelly, so it's no surprise we enjoyed this movie based on his legal thriller.  Matthew McConaughey stars as a lawyer with a reputation for representing (and often freeing) low-life clients.  Then he lands a wealthy young man, played by Ryan Phillipe, accused of rape and assault and thinks he stands to make a lot of money in the case.  But things aren't as they seem, and he gets pulled further and further into a tangled mess.  Great suspense with lots of twists and turns.  Marisa Tomei stars as his ex-wife.
• When I saw Johnny English, starring Rowan Atkinson, on the library shelf, I knew the kids would love it.  I was right - all the kids, including Ken!, laughed hysterically at this British slapstick comedy about a James Bond wannabe.  It's basically a British version of The Pink Panther and Inspector Clousseau.  Not exactly my kind of thing but good for some laughs!

Have you seen any good movies lately?

Update on CFS Teens

OK, that's a weird title, but I couldn't think of anything better!  Both of my teen sons have tried some new things this week, and another friend of theirs as well, so I just thought you might be interested to hear what is helping so far.

As background, both of my sons have had ME/CFS for the past 7 years.  Craig, now 13, has a mild form of CFS that is completely controlled with Florinef (a treatment for Orthostatic Intolerance, a condition that affects more than 97% of CFS patients).  With Florinef, Craig is symptom-free about 95% of the time and able to do anything he wants.  Jamie, 17, has more severe ME/CFS, plus was diagnosed with three tick-borne infections - Lyme, Babesia, and Bartonella - 15 months ago (the infections have possibly been there for as long as 5 years).  Before Lyme, Jamie did fairly well on Florinef - it allowed him to attend school mostly full-time.  He has struggled for the past 4 months as a result of herx reactions from his treatments for tick-borne infections.

Craig has been doing so well that he wanted to try reducing his dose of Florinef this summer.  He normally takes 0.15 mg a day (one and a half tablets), so we reduced it to just one tablet (0.1 mg) a few weeks ago.  He seemed to still do well - slightly longer recovery time after sleep-overs but otherwise he seemed fine.  Then school started last week.  Between school, soccer practice, homework, and physical therapy for a knee injury, Craig was wiped out.  He had been sleeping 12-14 hours a night during the summer (!), and could only squeeze in 11 hours a night on school nights...and that's with going to bed at 8pm.  So, after seeing him struggle this week, we increased his Florinef back to his usual dose of 0.15 mg on Thursday.  I also increased him from  half to a full salt tablet (Thermotabs) and made sure he had a water bottle with him (he used to drink a liter of Gatorade a day but got sick of it).  Wow, what a difference!  Thursday evening at dinner, he was full of energy, smiling and talking...in other words, his usual exuberant self!  So, we discovered this is the right dose of Florinef for him, at least during the school year.

We've started two new things for Jamie recently.  We added a new medication, clonidine, to his regimen.  Dr. Rowe thought it might help with sleep, OI, and also secreting more growth hormone, as I explained in an earlier post.  Jamie already takes trazodone and nortriptyline to correct his sleep dysfunction, and they were working fairly well until he hit this rough period recently.  So, he took a half a clonidine for one week, then upped it to a full tablet last night.  It's hard to say yet, but we think it is helping.  Jamie said he woke up fewer times during the night after starting it, and he seems better able to sleep later in the morning (i.e. 7 am instead of 6 am).

Jamie also got his first weekly saline IV this Thursday, as I described in my earlier post.  Saline IVs can help people with CFS by increasing blood volume, which improves the symptoms of OI, thus improving just about all of the symptoms of CFS, especially energy and cognitive dysfunction.  Administering the IV went well.  Jamie was well-hydrated ahead of time, so the doctor started the IV easily.  Jamie got 1 liter (we may increase it later), and it took about an hour.  He saw some immediate improvements.  He slept much better that night - said he barely even remembered waking up at all and didn't get out of bed once during the night (amazing!).  He went to school on Friday - third day in a row this week - and said he had more energy than he'd had in weeks.

The problem with saline IV therapy is that its effects are only temporary.  Today, he is worn out and doesn't have much energy.  He just decided he won't try to play in his soccer game this morning.  However, he's not totally crashed - he is working on his homework right now and is still in very good spirits.  He's just being cautious and is hoping to save up enough energy to maybe have a friend over later.

A good friend of ours, a local 15-year old boy with CFS who also attends Jamie's high school, also got his first saline IV this week with about the same results.  He was able to go to school the next day but not the second day after (he is not usually able to attend school as much as Jamie).  Both boys may eventually work up to 2 liters IV infusion at a time, which is what Dr. Rowe (expert in OI, especially teens with CFS) does with his patients.

So, it was definitely a better week than the previous one.  Jamie made it to 3 out of 4 days of school, which was great after how sick he's been recently.  He seems to have finally recovered from the oral surgery he had last Monday.  We'll see how the coming week goes.  My husband and I keep reminding ourselves...one day at a time.

Have a good weekend!

Movie Monday 9/5

As predicted on Friday, we had a quiet weekend at home, helping Jamie to rest.  I wish I could say he is now in good shape, but he's still spending most of his time on the couch, a full week after his oral surgery.  There has been some improvement - he's sitting up more, he says his mind feels more clear, and he's certainly acting more like himself.  Saturday night, my husband said, "The spark is back in his eyes."  And last night, he joined us at the dinner table for an hour for an end-of-summer crab feast.  Still, it's not looking likely that he'll be able to attend school tomorrow...or perhaps at all this year.  We are still hoping that some new treatments might help get him back on his feet.

So, we took it easy this weekend and watched lots of TV and movies with Jamie.  I'm having trouble remembering everything we watched right now (!), but I'll try:

• Just to cheer ourselves up on Friday morning, after canceling our weekend trip, we all watched Ferris Bueller's Day Off.  We've all seen it before, but that only makes it funnier!  Just what we needed to get our minds off our troubles and laugh.
• Jamie watched Salt starring Angela Jolie, a great spy thriller that Ken and I had already seen.  He'd wanted to see it for a while, so was happy when I brought it home from the library.  Its twisty-turny plot keeps you guessing right till the end.
• Ken and I watched The DaVinci Code with Jamie while Craig was out with friends.  We'd seen it before, but I knew Jamie would love the suspenseful, clever thriller (and he did).  Made me realize I need to read Dan Brown's other novels that have been sitting on my to-be-read shelf for a long time.
• Craig had a friend sleep over last night, so Ken, Jamie, and I watched I Am Number Four, a sci fi thriller based on a popular YA novel.  It was excellent: well-acted, exciting, and fast-paced.  When it was over, Jamie said, "I have to read the book now!  And the sequel!"  The sequel, The Power of Six, was just released last week (in hardcover).
• While I napped today, Ken and Jamie watched Battle: Los Angeles about aliens invading earth.  From what I could tell, the title was accurate - lots of battle sounds!  I think they both enjoyed it.

In between, we continued our marathon of Bones, introduced the kids to the classic sitcom, Taxi, and watched a few episodes of Mad Men (Ken and I).

Have you seen any good movies lately?

(If you are also interested in what our family is reading this week, check out my book blog).

CFS Grief

It's been a long time since I've cried over CFS (yes, it does get better over time), but I cried this morning.  Not about myself but my son.  There is no worse experience in the world than seeing your child suffer and not being able to help him.

Jamie is no better, five days after his minor surgery.  In fact, he seems a bit worse, definitely in the grips of a severe crash.  Worse, this is not all due to his surgery this week.  He's been in terrible shape since about April, probably a reaction to his treatments for Lyme, bartonella, and babesia (tick-borne illnesses).

Whatever the causes, it is extremely difficult as parents to see him lie on the couch day after day while his friends run around being normal teenagers and getting ready for their senior year of high school.  My husband and I have been so upset these last few days, though of course, we try not to show it.

This kind of grieving is an integral part of living with chronic illness, but it never gets easier (less frequent, perhaps, but no less painful when it hits).

There is a very good chance that Jamie won't be able to attend school regularly this year, as he has for the past five years, since starting treatment for OI.  That is so painful to consider.  This is his senior year of high school; all we want is for him to be able to be a normal 17-year old.

We had to cancel our planned trip to visit my family this weekend.  We were supposed to attend my cousin's wedding tonight, a big family gathering tomorrow, and spend the day at a lake with my aunt and uncle and cousins on Sunday.  Instead, we're looking at yet another weekend spent in the family room.

OK, I'm trying to pull myself together and make the best of things.  Jamie and I have just started watching Ferris Bueller's Day Off on DVD - guaranteed laughs!