Monday, September 15, 2014

Treating Immune Dysfunction in ME/CFS

I wanted to share what happened the past few days because it is a great example of how much better I am doing now than I was 5 or 10 years ago, thanks to treating immune dysfunction which is at the heart of ME/CFS.

My college son called last week saying he had bronchitis. It's a common occurrence for him and for me, probably because the characteristic immune dysfunction in ME/CFS generally makes us more susceptible to bacterial infections. By now, he knows the signs and understands how important it is to nip it in the bud, so as soon as he felt that tightness in his chest and began to cough, he saw our doctor and got on antibiotics. He comes home every Sunday so I can refill all his medicine boxes (and for Sunday dinner!), so we'd all been together a few days earlier.

Soon after his phone call, my younger son said he felt like he was getting a cold - scratchy throat, runny nose, etc. These two things taken together - in a house where 3 people have ME/CFS-type immune dysfunction - usually means we have been exposed to a virus, as is typical at the start of a new school year. Like most people with ME/CFS, we rarely catch colds or other viruses, but being exposed to one triggers a crash (which is sometimes hard to tell apart from a virus!). I have always referred to these kinds of crashes as virally-induced or virally-triggered.

In our experience, virally-triggered crashes are the worst kind. In the past, being exposed to a virus like that could knock my older son and I out for weeks or even months in the fall and winter especially (and my younger son, whose ME/CFS was milder, might be down for a week or so).

So, on Saturday morning, when I woke still feeling exhausted with a sore throat and feeling achy all over, I thought I was in for a long, difficult week at least. I had to help my father-in-law with some more moving-in tasks Saturday morning, but by noon I was headed back home to bed. My husband and I had to cancel our rare night out alone in favor of take-out and TV. I woke Sunday morning still feeling awful, with classic crash symptoms.

But then something amazing happened. I took my nap early on Sunday because we were expecting six people for dinner, and I still had to refill our 12 medicine boxes (all of which I was dreading). But I woke up from my nap feeling a lot better. In fact, I managed the medicines and dinner just fine and still felt OK at bedtime. I woke up this morning feeling like I usually do - well-rested and good, with no obvious CFS symptoms!

What was responsible for this almost-miraculous shift from month-long virally-triggered crashes to just 36 hours? I believe it's inosine and other treatments that target the immune dysfunction.

ME/CFS is, at its heart, an immune system disorder, as I explained in that previous post. The characteristics of that immune dysfunction have been well-defined in research studies, with a Th1-Th2 imbalance (Th2 dominance) predominant and low Natural Killer Cell function (it's explained in that post). In the case of ME/CFS, immune boosters or immune suppressants are equally ineffective for us - we need immune modulators or normalizers. Over the years, we have tried several treatments to try to normalize our immune systems, and some have been quite effective.

One of the first things to do is to find and treat underlying infections. The immune dysfunction causes reactivation of dormant viruses and susceptibility to bacterial infections. Most people with ME/CFS will test positive for some viruses that are common but normally dormant in the general population - anti-virals can help with those. Many people also have Lyme disease and/or other common tick infections (a negative test is meaningless, since there are no accurate tests for any of these infections yet), especially if joint pain or severe brain fog are part of their symptoms.

Once you've treated underlying infections - or at the same time - there are various treatments to try to normalize the immune system. Two that we've found very effective are low-dose naltrexone, which gave me an immediate boost in energy and mental clarity, and Imunovir or inosine (similar compounds).

I think the inosine in particular has had positive long-term effects (we started with Imunovir, a prescription medication, but when it became unavailable temporarily, we switched to inosine, the generic equivalent sold in the US as a supplement and found it just as effective and much cheaper). This week's experience is a great example. Since starting inosine, virally-triggered crashes have become rare and only last a few days instead of weeks or months. Winter used to be torturous for me, with one virus after another being brought into the house (with two school-age kids), and my son and I often crashed for much of the season. No more! I also generally have more good days and fewer bad days, and my stamina is much improved (beta blockers also helped with that). Immune-type symptoms (sore throat, swollen glands, feeling feverish, flu-like aches) have become rare.

So, with these improvements, any kind of crash has become rare for me, and a long-lasting one almost never happens now. My allergies have improved, too (another sign of the immune system being more normal). My son has seen all these same improvements, and I think inosine is a big part of why he is able to be at college now, living on campus. These treatments are what are helping us to lead more normal lives, even though we both still have ME/CFS.

Friday, September 12, 2014

I'm Still Here!

Just wanted to pop in for a quick post to let you know I am still here!

It's been a hectic couple of weeks here, moving my father-in-law cross-country from Oklahoma to Delaware and helping him get settled here. I spent all of this week driving him all over town - dentist and doctor appointments, stores, soccer games. I've only been home long enough to sleep and cook meals! He's 89, and I think he's held up with the hectic schedule better than I have.

The movers came today with all his stuff, so we helped him move into his new independent living apartment at a complex close to us. So today was grocery shopping and lots of unpacking. I've enjoyed eating lunch with him in the dining room there the past two days. He seems to really like it so far; it was tough for him to move so far away after spending his entire life out west, but I think he is very happy to be close to us and not so isolated anymore.

So, my husband and I actually have a quiet evening together, after weeks of travel and craziness. We plan to catch up on our favorite TV shows! Yeah, I know, major excitement, right? I'm just glad to be lying on the couch with nothing urgent to do for once.

I've got lots of interesting blog posts written in my head, so hopefully, I will actually have time to get them written in real life next week.

My father-in-law and my husband at our son's soccer game this week.

Monday, September 08, 2014

Movie Monday 9/8

My husband was still out of town this week, helping his Dad pack up and move here to Delaware, so I had another weekend of girl movies! Though, I really missed watching our usual weekly TV shows with my husband. They just got back today.

Friday night, I was feeling crummy, so I treated myself to a feel-good classic, Footloose. Can you believe I had never seen it before? I know, crazy. I thoroughly enjoyed this 1984 dancing classic - it reminded me of Flashdance with a male main character. In case you, like me, somehow missed this popular movie, it's about a teen boy from Chicago who moves to a small town where dancing is outlawed. It stars an unbelievably young Kevin Bacon - half the fun was seeing him as a youngster! Sarah Jessica Parker is also in it, also as a teen - she was only just-turned18 when she acted in this role - with supporting roles by John Lithgow and Dianne Wiest. I loved it, and it was just the pick-me-up I needed, with a great 80's soundtrack, lots of music and great dancing, and a somewhat predictable but still great resolution. After it ended, I wanted to re-watch Flashdance, Dirty Dancing, and other musical 80's classics!

On Saturday night, I watched One Day, a romantic comedy I borrowed from the library. It was based on a unique concept: checking in with two friends on the same day every year for 20 years. Anne Hathaway stars as Emma, a British college graduate who meets Dexter, played by Jim Sturgess, on their graduation day on July 15, 1988. The movie then checks in with the two of them every July 15th. They have a near-miss romantic encounter early on and then decide to be friends. Their lives take vastly different paths, but they always stay in touch and care for each other. I enjoyed the movie, although the format made it a feel a bit choppy at times, especially when major life events occurred that hadn't been shown. Overall, it is unique and different from most romantic comedies. I thought the ending would be predictable, but it wasn't at all - there were plenty of surprises in store.

Have you seen any good movies lately?

Monday, September 01, 2014

Movie Monday 9/1

I had a very rare weekend to myself, with my sons off to the beach with friends and my husband helping his Dad move out here. I rested and recuperated, caught up on a few things around the house, ate take-out, read a lot, and watched a couple of movies my husband wouldn't have wanted to see!

Saturday night, I watched Friends with Kids, a romantic comedy that hit the theaters last year. Jennifer Westfeldt stars as Julie (she also wrote and directed the film!), a woman living in Manhattan who can't seem to find the right guy. She hangs out with her lifelong best friend, Jason, as well as two married couples they are friends with (two of the four friends are played by Jon Hamm and Maya Rudolph). After both married couples have kids, Julie feels her biological clock ticking, so she and Jason decide to have a baby together, as friends. They think they've beat the system, as they happily glide through the baby and toddler years while their friends' marriage seem to be falling apart. But the ideal world doesn't last, and things get complicated when Jason begins seriously dating a young dancer and Julie gets involved with a handsome divorced dad. Although the ending is somewhat predictable, if you've ever seen a romantic comedy before, the movie is still very well done and original, with plenty of laughs and drama both. I enjoyed it.

Sunday night was a bit darker, movie-wise. I watched Sylvia, a film about Sylvia Plath, with Gweneth Paltrow in the lead role. So, yeah, you know how this one ends, and it's not a happy ending, right? True, but it's still an excellent movie. Paltrow is mesmerizing as Plath at all her ages and in all her moods. I haven't read any Plath before, but I know all about her (who doesn't, right?). It's interesting to see behind the scenes into the life of this literary icon, from her life as a Fulbright Scholar at Cambridge to her marriage to famed poet Ted Hughes to her time as a mother and her downward spiral further into depression and eventually suicide.  So, if you think that might be too disturbing to you (my husband would have hated this one!), best to pass it up, but if you are interested in knowing more about the famous poet and novelist and want to see her skillfully brought to life on the screen, then this is the movie for you.

Have you seen any good movies lately?

Sunday, August 31, 2014

Low-Dose Naltrexone Update and Dosing

Long-time readers of my blog will recall that I started taking low-dose naltrexone (LDN) a long time ago - almost 6 years now. It was one of the very first ME/CFS treatments that actually made a significant difference for me and caused obvious improvement in my overall condition and quality of life. Here I want to share a brief update, as well as something new I've learned about dosing with LDN, and some newer links for more information.

For background for those who are unfamiliar with LDN, I suggest you read these earlier posts: my introductory post on LDN and my experiences and an LDN update, including dosing information and how to get started.

Long-term Dosing
So, fast-forward 5 1/2 years...earlier this summer, I was wondering whether LDN was still working effectively for me after all these years. I felt as though I wasn't doing quite as well as I had been when I first started it, that perhaps it wasn't working for me anymore. I turned to the Facebook LDN for Fibromyalgia and CFS group I belong to and posed the question to others who take LDN for these illnesses. Two different people said they'd heard that after being on it for several years, you may have to either lower the dose or take it every other day to keep it effective.

So, figuring I had nothing to lose and it couldn't be harmful to take less, I tried switching my dosing to every other day (still at bedtime and still 3 mg). Wow! Like magic, I felt a surge of energy on this new dosing schedule, just like when I first started LDN almost six years ago. After a week or two (I am always the guinea pig in our house), I switched my son to the same alternating-days dosing schedule. We are both doing well with this.

I have searched and searched online and can't find any official recommendations to do this...but again, how could it be harmful to take less of a medication that is already such a tiny dose? The one hint I could find was on the LDNScience website (see below). On its Q&A page, it says "Can your body become accustomed to LDN's rebound effect?" And their answer is:

"In theory the answer is yes, and therefore it may make sense if LDN is losing its effectiveness to take a break from using it every so often. This question has not yet been addressed in clinical trials."

Well, it has certainly worked for me and my son!

More Information
If you have not yet tried low-dose naltrexone, here are some great resources for learning about it yourself, discussing it with your doctor and educating him/her, and how to obtain it and get started on it:
  • LDN Homepage - the oldest of the LDN websites and no longer being kept up-to-date, but it was started by the doctors who pioneered its use and is still a great place to start to understand what it is and how it works. There is also a list of compounding pharmacies that supply it (we still use Skip's in Florida).
  • LDNScience - a public information project of the  MedInsight Research Institute, this website provides excellent scientific information on LDN, including a short video that explains how it works, the Q&A section I mentioned above, success stories, and a How to Find a Doctor search engine.
  • LDNers - a website focused on the use of LDN in MS but with information relevant to other illnesses as well, including a list of research studies on LDN.
  • Stanford FM study - positive results of a study conducted at Stanford on using LDN for fibromylagia patients (big shock - there have not been any studies done yet on ME/CFS).
  • LDN Research Trust - a UK organization dedicated to research and education on using LDN for various immune disorders, like ME/CFS (and relevant anywhere, not just the UK). The site includes a wonderful LDN Information Packet that is ideal for sharing with doctors plus specific information on how to obtain LDN in the UK.
  • My overview of LDN and my own experiences starting it, 2008.
  • My 2010 Update on LDN, including details on dosing and how to get started.
I think that about covers it. Since immune system dysfunction is at the heart of ME/CFS, and LDN is one way to help normalize the immune system (see also my posts on Imunovir/inosine), this is a treatment that gets to the root cause of ME/CFS. It has definitely helped us...and now with this minor tweak in our dosing schedule, it continues to help us.

Please feel free to share your own experiences with LDN in the comments section.

Monday, August 25, 2014

Movie Monday 8/25

Trying to get back into more of a regular blogging/writing routine again, as summer winds down. I love fall!

And we actually watched a movie this past week. With our college son moved into his new apartment and our teen son out with friends (he got his license this summer and his own car, so we've barely seen him), my husband and I watched Divergent Friday night. We both read the book and enjoyed it, so we have been eager to see the movie but missed it in the theater (as usual).

The movie adaptation stuck very close to the book, which we both liked. The casting was excellent, and it was fun to see the book brought to life. For those who haven't read the trilogy, it is a dystopian YA novel about a future society where peace is maintained by dividing its people into 5 different factions, each with its own characteristics and role in society. The story takes place in and around what used to be Chicago. Just like the book, the movie is action-packed (and sometimes a bit violent) and suspenseful but also has some romance. The main character, Triss (played by Shailene Woodley who also starred in the YA movie-based-on-a-novel The Fault in Our Stars this year), is turning 16 and must choose whether to stay in the faction she has grown up in, Abnegation, or switch to a different faction in the Choosing Ceremony. Overall, we both thoroughly enjoyed the movie and are looking forward to the adaptations of the next two books, Insurgent and Allegiant.

Have you seen any good movies lately?

Saturday, August 23, 2014

SuperBetter Game

As I mentioned in my post yesterday, I am looking forward to some quiet, alone time and trying to get back into some of my usual routines now that this difficult summer is coming to an end.

One thing I like to do just for myself when I wake up earlier than the rest of the family on a Saturday or Sunday is to watch a TED talk. I look for something inspiring or interesting or funny. I have a hard time taking time out of being productive to just take care of myself, and watching one of these talks always perks me up and inspires me (here is one of my past favorite TED talks that I wrote about here).

The TED talk I found this morning surprised me. It seemed to be about video games - which I really don't play, other than a little Words with Friends with my family - but I was intrigued that it was in a playlist of "TED's quirkiest talks that pulled in millions of views." Well, it turns out that this talk is actually directly applicable to those of us living with chronic illness!

When the speaker suffered a serious concussion with year-long severe effects, she developed a game for herself to try to pull herself out of depression and stop the suicidal thoughts she was having. Eventually, that game became SuperBetter, a real game that is now available online or as an app.

It's MUCH better when she explains it herself - it is a short talk and is very entertaining (and fascinating), so take a look for yourself:



Basically, her game takes a fun approach to improving your physical, mental, emotional, and social resilience, and she has LOTS of scientific studies to back up the theories here. And the tasks to complete are super-easy, even for someone who is bedridden. I already feel better!

If you are intrigued like I am, check out her game SuperBetter.

Hope you have a great weekend! Take some time out for yourself.

Friday, August 22, 2014

August Update


Big sigh...my oldest son moved back to college today and my youngest goes back to high school next week, so I am hoping that the flurry of frantic activity that has been this summer will finally slow down a bit. Sorry for the lack of blog posting. I was away with no internet for more than two weeks this month and haven't had a moment to myself since! So, here is a quick update on me and some of the things I posted about earlier this summer:

Youngest Son:
I wrote back in July that my 16-year old son had gone off his Florinef successfully for the first time in 8 years and seemed to be recovered. Well, I am happy to report he is still doing well! It's been about 6 weeks now, and he's still full of energy with no crashes at all. He started soccer last week, with often 3-4 hours of practice a day, and is still fine. He also got his license, a car, and his first girlfriend! In short, we've barely seen him, and he is a normal, active 16-year old. He really does seem recovered. We are thrilled, of course!

Oldest Son:
As I said, I helped my 20-year old son move back to college today. He's the one with far more serious health problems. He's had ME/CFS for 10 years and also has 3 tick-borne infections that went undiagnosed for 5 years. In case you're unfamiliar with Lyme disease, that makes them very difficult to treat and get rid of. He started treatment for those 3 infections about 4 years ago and was in terrible shape (again) this winter until we started working with a dietician and took him off antibiotics and switched to a well-known herbal protocol.

He is still doing well with this regimen, though progress has been slow...but at least he hasn't backslid. The restricted diet is tough for him, but he learned for himself this summer that it really does help when he sticks to it, so he wants to keep trying. He is very slowly increasing his dose of the herbal stuff - he's only taking 1 drop of the stuff every other day! It's potent, and he can tell it's working.  Vitamin B12 shots every other day, chosen specifically for his genetic type, have had an immense positive impact, and the dietician is trying to maximize that with some minor adjustments this fall.

So, he starts his junior year of college next week, still taking 3 classes a semester (but now they are all tough engineering classes so that is quite a feat!). His grades went from barely B's and C's last year to A's and B+'s more recently, so that is further proof that he is improving. It is a struggle for him every day, and I can't imagine dealing with all this at 20, a time in life normally defined by freedom, but he is strong, loves being at college with his friends, and has an incredible positive attitude. He's my hero.

Dads:
As I mentioned earlier this summer, my Dad was diagnosed with stage 3 melanoma this summer. He's undergone two surgeries so far and as soon as his wounds heal, he will start Interferon treatment. We have been up to Rochester, NY, (my hometown) 3 times this summer to visit. The surgeries have gone well, but he knows he has a tough time ahead. I have been researching supplements and other OTC things that can help cancer patients.

At the same time, we have spent much of the summer making arrangements to move my 89-year old father-in-law from Oklahoma out here to Delaware. The move will finally take place over the next 3 weeks. All of this has been very stressful for the whole family.

Lyme Disease:
About a month ago, I posted that I have Lyme disease for the second time. This time, I caught it quickly and started treatment immediately. Within 2 days on doxycycline, I was feeling much, much better and within about two weeks, there was no sign at all of any Lyme symptoms. That was about July 28. The rule of thumb is to stay on antibiotics for at least 4-6 weeks after all symptoms disappear (because the Lyme bacteria have a 28-day reproductive cycle), so I should be able to stop the doxcycyline in about a month. We just saw the Lyme doctor this week, and he was very pleased that I'd responded so fast (catching it quickly makes all the difference!).

Me Overall:
Despite all the stress and extra activity this past month, I have been doing quite well physically and managing a lot. Besides getting rid of Lyme, we made an adjustment to the way we dose our low-dose naltrexone, and it has made a huge difference. Don't worry - that will be my next post, next week! I just need to find a few minutes to look up some background information. I am still eating a mostly Paleo diet, too - not only to support my son but also to keep yeast overgrowth under control, especially since I am on antibiotics again.

I managed a lot of physical activity on vacation and enjoyed hiking and kayaking. Check out last year's post-vacation post about why I can do so much more on vacation.

So, I am pretty exhausted from everything and my husband and I are both feeling overwhelmed, but all things considered, I am doing well. I am really looking forward to the start of school next week and getting back to a more normal, quieter routine where I can take care of myself better and find some writing time/energy.

How has your summer been?

Visit my book blog tomorrow for some vacation photos for Snapshot Saturday!

Friday, July 25, 2014

Celebrities with ME/CFS

Erica Verrillo, a wonderful journalist with ME/CFS who writes about our illness, has written a new article for ProHealth called 10 Celebrities with ME/CFS. I found it interesting because I only knew about a few of them.

Of course, everyone knows about Laura Hillenbrand, the award-winning author of Seasbiscuit and Unbroken who is housebound by ME/CFS. I knew about Blake Edwards, the famous Hollywood writer and director, and our family has long hailed Michelle Akers, an extraordinary professional soccer player until ME/CFS ended her career, as our own personal hero. But there are many more on this list whom I had no idea had ME/CFS.

Interestingly, it also appears that a few of them have recovered, which is hopeful in itself. I just wish the general public knew more about these celebrities and their/our illness. We need a famous face to help build awareness - our very own Michael J. Fox. I posted this article to my personal Facebook page to help build awareness among my friends and family. It's a small step...

Did you know about these celebrities' struggles with ME/CFS? Do you know of any others not on this list? Help spread the word!

(And a big thanks to Erica Verrillo for what must have been a lot of extensive research!)

Thursday, July 24, 2014

Yes, I Have Lyme Again

I apologize for the lack of frequent blog posts lately. We are dealing with a lot at our house this summer, including urgencies with both of our fathers, and I'd been in bad shape since the start of July, so writing time and energy have been scarce. It won't get much better before fall.

I wrote last week about the possibility that I might have Lyme disease again (including a brief history of my previous bout of Lyme). We traveled to visit my Dad over the weekend (he's undergoing cancer treatments), and I was able to get in to see our Lyme doctor on Monday afternoon. He confirmed that I do seem to have Lyme again, both because I know how it affects me - and the symptoms were exactly the same as the last time - and because I responded very well to doxycycline. Within hours of my first dose, the then-excruciating knee pain began to subside. After a few days on the antibiotic, my energy was back, I was feeling good again, nausea gone, and knee pain almost gone except for a bit in the evenings. And after a week on doxycycline, all my symptoms were gone, and I was feeling quite good again, back to my normal baseline of energy and stamina (not great for a normal person but on the high side for someone with ME/CFS!).

He took some blood to run a few exclusion tests, just to be sure there's not anything else going on. Lyme testing per se is pretty useless at this point for me. I had Lyme for over 3 years before and never had a positive test result the entire time, which is not unusual. I asked him about testing for other tick-borne infections, but he quizzed me on symptoms and said that if I didn't have any of the symptoms and the doxy seems to be doing the job on its own, then co-infections aren't likely. If any new symptoms crop up, we'll consider that again (once again, the testing is unreliable so diagnosis depends primarily on symptoms).

I responded well last time - and so far this time - to doxycyline, so we're going to stick with that. He gave me a coupon for a new brand called Doryx where the doxy is all encapsulated in tiny capsules in the pill so that it doesn't upset the stomach the way generic doxy does and you don't have to worry about what you eat with it (iron, calcium, and magnesium all block the action of regular doxy). So, that's all good. Doxycycline does cause sun sensitivity, so I'll need to be careful the rest of the summer, but it didn't affect me too badly before at this normal dose - I only noticed that effect at higher doses, so we'll wait until summer is over to go up on the dose.

Meanwhile, I am pulling out all the stops to avoid another yeast overgrowth. I am already on a strict no-sugar, no grains diet, taking high-powered probiotics, and anti-yeast supplements. I doubled all of that, and increased my dose of oregano (an antibacterial, antiviral, and antifungal) by 4. He is hoping we can manage without prescription antifungals, but we'll see.

As for whether this is Lyme STILL or Lyme AGAIN, it seems pretty clear to me that this is probably a new infection. I haven't had any of the symptoms I associate with Lyme (knee pain, nausea, continual worsening of CFS) in the 4 years since I got rid of Lyme the first time. Research seems to back up that hypothesis: a fascinating study published in the New England Journal of Medicine of patients who'd had Lyme more than once showed that in all cases, they were new infections from different strains of Lyme bacteria. You might think that's a strange coincidence, the same person getting Lyme more than once, but it's really not. I live in the mid-Atlantic, which along with the northeast, midwest, California, and many other areas have rampant numbers of infected ticks now and practically an epidemic of Lyme disease. Just about every family we know in our area has at least one person who's had Lyme.

In fact, here's my public service announcement again:

ANYONE with CFS or FM (and especially those with joint pain) should be evaluated by a Lyme expert for ALL tick-borne infections. They are incredibly common all over the world, very hard to tell apart from CFS and FM if you don't know what to look for, and negative blood tests mean nothing since they are known to miss many cases. There's more information in this blog post.

As for me, I am feeling much better and hoping that will continue. I also hope that I caught it early this time so that my treatment won't take nearly as long as it did before.

Tuesday, July 22, 2014

Movie Tuesday 7/22

A Tale of Two Movies...It was the best of times, it was the worst of times...

Our teen sons are off on their annual week of sailing with their grandparents, so Ken and I are enjoying a quiet week to ourselves. We indulged in a couple of movies this weekend - one that was wonderful and the other - well, not so much.

First, we watched Saving Mr. Banks, a Disney movie about the making of Mary Poppins that is warm, touching, and funny. Full disclosure: I have been a huge fan of both the Mary Poppins movie and the original book since I was a little girl! In this movie, Walt Disney, played perfectly by Tom Hanks, tries to convince grumpy author P.L. Travers, played by Emma Thompson, to sell him the movie rights to her famous nanny. He invites her to Hollywood for two weeks, and attempts to woo her with all that Disney stands for, not realizing that she is not only immune to Disney's charms, she is downright disdainful of them. Interspersed with these scenes set in 1961 Hollywood are scenes from Travers' childhood in the wilds of Australia that show the origin of much of the basis for Mary Poppins' characters, including a painful though loving relationship with her father. The parts about her childhood are heart-warming as well as heart-breaking and also illuminating for Mary Poppins fans. And the Disney scenes of the writing and composing of the movie are clever and funny, filled with familiar lines and iconic songs you've known since you were a kid. The movie is based in part on actual tapes made of P.L. Travers' sessions at Disney (which she insisted on to ensure her wishes were not ignored). All in all, it is a delightful, touching two hours. Watch Disney's Mary Poppins first (unless, like me, you know it by heart) and then watch Saving Mr. Banks to get the most out of it (though it would even be enjoyable to those who've never seen the movie - are there such people??). I guarantee your next stop will be the library for the original book.

Last might, we watched Enemy, the complete opposite of Saving Mr. Banks! Jake Gyllenhaal plays two roles in this dark, creepy, very confusing movie. When the movie opens, he is playing Adam, a reclusive, shy, depressed history professor. When a colleague from work convinces Adam to watch a cheery DVD, Adam notices something that changes his life: he spots a bit actor in one scene who is his exact double. He does some digging online and finds the actor's agent and then his home address and tracks him down (yes, all a bit stalkerish). Once the two men meet face to face, the movie becomes very confusing. We often asked each other, "Wait, which one is this? The actor or the history teacher?" The whole thing is filmed with a sort of yellowish cast to the scenes, and much of the film moves at a slow pace, but with oddly discordant creepy music playing in the background the whole time. So, although it seems like not much is happening on the screen, the music makes you feel tense and full of dread. When the last scene came onto the screen, Ken and I simultaneously yelled, "What??" Then we spent the next 30 minutes trying to figure out what on earth really happened in the movie. Many online reviews suggested that if we didn't get it, it was because we weren't smart or sophisticated enough, and that it becomes much clearer on subsequent viewings. Not much chance of us watching it again! Though, it definitely did get under our skins and into our minds. For the past 24 hours, one of us keeps suddenly saying to the other, "OK, in that movie, why on earth...?" A lot of things just didn't make sense...and still don't! If you do decide to watch the movie, don't read online reviews first - there were lots of spoilers there.

Have you seen any good movies lately?

Monday, July 14, 2014

Lyme Again?

I think I may have Lyme disease again. I've been trying not to jump to conclusions, but I think it's time to face facts and start a trial of doxycycline to test the theory.

I have a complicated illness history that I will try to sum up briefly:

I suddenly became ill with ME/CFS in 2002. I know that wasn't Lyme because it took me a year to get an accurate diagnosis and during that year, one doctor misdiagnosed me with Lyme and tried treatments for several months with no change at all. Besides, CFS fit my symptoms much better, and I have improved over the years with the help of CFS treatments.

I have had Lyme, though. About 6-7 years ago, I had a sudden-onset of knee pain (after 6 years of CFS with no joint pain at all), plus nausea. In addition, all my usual CFS symptoms got much worse. I knew immediately this was something different and not "just" a CFS flare-up, though it took a few weeks to convince my doctor since my Lyme tests kept coming back negative (a common occurrence). I was treated with a variety of antibiotics and natural/herbal remedies for about 3 1/2 years, until I could stop the antibiotics without my Lyme symptoms coming back (general rule of thumb is at least 4-6 weeks of treatment past when symptoms clear up, but it took me much longer, probably because of CFS).

That was about 3 years ago, and I've been back to my CFS baseline since then, with improvements with various CFS treatments and little or no joint pain or nausea.

About a week ago, I noticed the achiness starting in my knees again, especially late in the day. Within a few days, nausea came back, too. My husband and I thought it was probably just a CFS flare-up because of all the stress and extra exertion in my life lately (see recent posts), but I spent the weekend just resting and was no better. In fact, I felt awful Sunday night - even after a 3-hour nap - and couldn't even stay on my feet to finish making dinner - horrible nausea and knee pain, my old Lyme buddies. I woke this morning feeling exhausted and couldn't get out of bed until a couple of hours past when I normally get up (mornings are usually my best time and I normally wake feeling good, thanks to treatments for sleep dysfunction).

So, I talked it over with my old Lyme doctor (who is still my son's Lyme doctor). He agreed that a trial of doxycycline should be able to tell me if my suspicions are correct. That's how I confirmed the diagnosis last time...I felt really great the first few days on doxy, all symptoms cleared up, and then felt worse (the herx reaction). So, I will give it a try and see what happens, being extra careful to guard against yeast overgrowth this time.

I am really upset over all this - I just do not need another thing to deal with right now - but waiting and resting seems to just be making me worse, so I need to see what happens.

If you want to know more about my past experiences with Lyme (and/or my son's), click on Lyme disease down below, where the labels are to see all posts related to Lyme.

And for more information on Lyme itself and why it is so hard to tell apart from CFS (and why testing is so unreliable), see this recent post on CFS and Lyme.

Saturday, July 12, 2014

Quote It Saturday 7/12

We've been back home for a few days now, though life is still very unsettled. My dad seems to have come through his cancer surgery fairly well and is recovering, though he still has a tough road ahead. We will probably go back to visit him again next week. We returned from our trip to help my father-in-law clean out his house to prepare to move out here near us, but the phone has been ringing constantly with calls from Oklahoma - real estate agent, estate sales people, concerned neighbors, and my father-in-law every 10 minutes or so, worrying about it all! Thankfully, my husband is handling most of that, and it looks like we might have a buyer for the house already, after less than a week.

So, just a brief quote today but one that is very relevant for me this week:
"But when we ignore the body, we are more easily victimized by it."
          - The Unbearable Lightness of Being by Milan Kundera
(you can read my review of the book here)

I wondered yesterday whether I had Lyme disease again because my symptoms were flared up so badly every evening this week. My husband pointed out that I have been under extreme stress this week, traveling and worrying about my dad, plus much more physical exertion than I am used to, cleaning out the house and then flying home (an 8-hour trip through 3 airports). After he calmed me down and I stopped panicking, I realized he was probably right and that I have been feeling fairly good in the mornings and then awful by late afternoon, which points to stress and exertion.

I have been ignoring my body lately and paying the price. I am trying to take it easier today. Thankfully, it is Saturday, so that means less running around for me. My husband kindly took our son to PT, stopped at the grocery store, and will run him to a friend's gathering later. Hopefully, a little rest and TLC will get me back in my normal shape.

Remember to take care of yourself! Hope you are enjoying a relaxing and restful weekend.

Friday, July 11, 2014

One Son Recovered?

Things have been crazy around here, with a visit to help my father-in-law sort through his house to get ready to move here and my dad having a 7-hour surgery yesterday as a first step to treating stage 3 melanoma. So, I am pretty exhausted and experiencing lots of stress.

But among all the bad stuff, we've had some good news, too. My 16-year old son has weaned himself off his Florinef (medication for Orthostatic Intolerance - OI) for the first time in 8 years, with no apparent ill effects! We tried the same thing last summer, but his symptoms flared up. So, after 8 years, he is now taking no Florinef, potassium, or salt tablets...and so far, he seems to be doing well. He's been very active - playing soccer, golf, biking, etc. in the summer heat, plus going to PT several times a week - and he's been feeling great.

His CFS has always been mild, and he fits the profile for those with the best chance of recovery (childhood onset, mild symptoms, up and down pattern, abrupt onset).

His symptoms began at age 6 (1st grade), at the same time as his older brother who was 10. Our younger son's symptoms were different, though, than mine or his brother's. His main symptoms were pain-related: chest pain, back pain, headaches, plus in his 6-year old words, "just feeling bad all over." He showed the classic post-exertional crashes and crashes when exposed to a virus but in between those bad periods, he felt fine. We talked privately to his pediatrician about our suspicions (by then his older brother and I were both diagnosed with CFS) but held off on officially diagnosing him - he was so little and still functioning well much of the time that we didn't want to saddle him with the label of being sick.

By spring of 3rd grade, he had missed over 35 days of school, and the principal called us to find out what was going on - at that point, his pediatrician ran all the necessary exclusion tests and officially diagnosed him with CFS. I had discussed his symptoms with Dr. David Bell (pediatric CFS expert, now retired) and Dr. Peter Rowe, pediatric CFS and OI expert at Johns Hopkins. They both thought that most of his symptoms were OI-related and would improve with treatment, so we started him on Florinef (our pediatrician worked with Dr. Rowe by phone, something he is still happy to do to help educate other doctors about CFS and OI in kids) which had helped out older son considerably.

The Florinef worked wonderfully - it cleared up all of his pain symptoms and greatly reduced the post-exertional crashes. On Florinef, he was symptom-free about 95% of the time and could do just about anything he wanted. He would still crash occasionally if he really overdid (we had an "only 1 sleepover in a row" rule!) and a cold might knock him out for a week or so, but otherwise, he has lived a fairly normal life from starting Florinef at the end of 3rd grade through the present.

He typically missed between 12 - 15 days of school each year for those occasional crashes but felt perfectly well the rest of the time. He's been playing soccer since he was 4 years old and has been on his school soccer team since starting high school, as well as a travel team this past year. He has had some injuries that sidelined him (he's hypermobile and prone to soft tissue injuries), but CFS/OI had little to no effect on his athletic life.

This past year, he missed only 3 days of school the entire year! That's a pretty amazing record for our household. And that included time out after a knee surgery. So, when he wanted to try going off Florinef again, we gave him the OK. He tapered off, as you're supposed to, and has now been completely off it for several weeks and is doing very well.

So, is he completely recovered? I don't think that's ever an easy question. He's definitely got Joint Hypermobility Syndrome, and he thinks he still has some mild OI symptoms. He says he sometimes gets dizzy if he stands up too fast or doesn't stay hydrated. But otherwise, he seems quite well. The real test will be starting school in the fall - going to school full-time and playing soccer two hours a day - but so far, so good!

That's your dose of hope for today - some people DO recover and it is possible.

Tuesday, July 01, 2014

Busy, Stressful Times

Hi, all. I apologize for the lack of posts here lately, so I thought I'd stop in to explain quickly. Things have been difficult and hectic around here. I've reverted to survival mode - make meals, check e-mail, get done what absolutely must get done.

We just returned from a last-minute visit to my hometown of Rochester, NY, to spend some time with my dad. He was recently diagnosed with stage 3 melanoma on his scalp. It has moved into the lymph nodes on one side of his neck but doesn't seem to have spread from there yet. It has been a shock for all of us, as he has been very healthy and doing well previously. He's going to have surgery next week - possibly multiple surgeries, depending on what they find when they get in there.

So, we drove the 8 hours each way to visit and spend some time with him. Soon, we will leave again on a long-planned trip to Oklahoma to visit my father-in-law, whom we are working on moving out here by the end of the summer. We will help him get some things done for the move and also visit with family coming up from Texas to see us while we're there. It's probably our last trip out there, so it's a big deal for all of us - our sons have grown up visiting there twice a year!

When we get back, we will probably make another trip up to Rochester, after my dad's surgery.

So, yeah, things have been pretty crazy here lately, and it's not going to get any better for a while! This week, I am focused on getting unpacked from one trip and ready for another, so I probably won't have much time for writing again. Physically, I am managing OK. I was exhausted this weekend because I don;t sleep well in hotels but am better now that I am back home.

I just wanted you to know I haven't forgotten about the blog - just distracted lately. I do have some posts in mind, when I can find time.

I saw this picture & saying on my aunt's fridge this weekend when we were visiting. She is the caretaker for my uncle who has some severe medical problems that cause issues similar to dementia, so she gets what this life is like. I am trying to remember this...hope you like it, too!


Saturday, June 21, 2014

Quote It Saturday 6/21

Happy First Day of Summer/Summer Solstice! It's actually dark, cool, and wet here today, but we had enough hot and humid earlier this week.

Last night, we went to a high school graduation party for a set of twins. One of them has ME/CFS and was mostly housebound a couple of years ago and the other is healthy, so this was an especially happy occasion. I often say that one of the biggest things I've learned in my 12 years of having a chronic illness is that everyone is dealing with some sort of challenges. Like ME/CFS, they may not always be visible, but everyone has something difficult in their lives to overcome: illness or injury to self or a family member, death of someone close, disabilities visible and invisible, financial problems. That was once again proven true to me last night, as we sat around a table with the parents of the twins (whom are good friends) and a bunch of people we didn't know. The evening began with typical small talk, but someone asked how we knew the graduates, and we mentioned our ME/CFS connection. That led to questions about ME/CFS and about Lyme, which our son has, and then some startling discoveries.

These other people around the table - who seemed totally normal and healthy - began to share their stories, too. One woman has had fibromyalgia for 20 years and a few years ago went to Pittsburgh for a 3-day trip and ended up spending 3 months in a hospital there. They discovered a brain tumor while she was visiting, then she had s stroke during the surgery to remove it. Another guy mentioned (casually) that his daughter was on a ventilator and how excited they were that she could now get by only using it at night. As I often say, when you meet someone, you never know what challenges they are dealing with beneath the surface. I think that's a good reason to treat everyone you meet with compassion and respect, even (especially?) if they seem rude or impatient.

Anyway, there is a connection here to a book quote! I recently read Velva Jean Learns to Fly by Jennifer Niven, a historical novel about a woman who becomes a pilot to help with World War II. My book group all enjoyed the book, and you can read my full review here.

In this passgae, the main character, Velva Jean, muses on exactly this topic of the baggage we acquire through life, as she meets an old friend and wonders about what he's been through:
 “The more things that happened to me, the more I thought it was like carrying a suitcase – you kept adding things to it, like your mama dying and your daddy going away, heartbreak over your husband, heartbreak over a boy that died. You just started adding these things to your suitcase until the case got heavier. You still had to carry it around wherever you went, and even if you set it down for a while you still had to pick it up again because it belonged to you and so did everything inside it.”

          - Velva Jean Learns to Fly by Jennifer Niven
In another passage toward the end of the book, she compares flying a plane to being in charge of your own life:
"If there was one thing I'd learned, it was that you were responsible for your own ship. You had to look after the engine and make sure the plane was in order and ready to be flown. You were in charge of plotting your course. When you were in the pilot's seat, it was your hand on the throttle, no one else's. If your oil ran out or you lost an engine or the engine caught on fire and you had to crash, you were the one saving yourself. No one else could do it for you."

          - Velva Jean Learns to Fly by Jennifer Niven 
 That is exactly how I feel about living with a chronic illness and the approach I have taken with my own illness. If you want to feel better and make the most out of your life, you have be in charge of your own health and be your own advocate. You have to learn about your illness - and sometimes even teach your doctor about it! In the case of ME/CFS, this means being very patient and persistent in trying various treatments, sticking with them through trial and error to find just the right combination for you, and even keeping up with recent research. It's hard to do all of this when you feel so terrible, but it's the best way to take charge of your life...and save yourself, as Velva Jean says.

Well, I hope you are enjoying your weekend, wherever you are!  

Friday, June 20, 2014

2014 Changes to Social Security Ruling for ME/CFS

I watched the CFS Advisory Committee (CFSAC)'s spring meeting earlier this week online, and one of the presentations I found most informative was about recent changes that have been made the US's Social Security Ruling for ME/CFS. Knowing exactly what is in the ME/CFS ruling will definitely help me when I reapply in a few years (I was awarded partial past benefits last year but nothing ongoing), though much will still depend on which adjucator and which judge you are assigned.

In the interest of being timely, I am going to mostly just paste my notes here that I took while I was watching the presentation, with a bit of extra explanation where needed. Please let me know if anything is unclear or if I got anything wrong. I tried to type my notes as I was listening/watching, so hopefully it is accurate, though I may have missed some points.

 
CFSAC Mtg 6/17/14
Social Security – New ME/CFS Ruling
Mark Kuhn – Social Security Administration

New ruling was effective April 3, 2104.

Replaces previous ruling – provides guidelines for adjudicators (those who review disability applications).

ME/CFS can constitute a Medically Determinable Impairment (MDI) and can be severe and disabling.

Adjudicator Considers:
  • Symptoms
  • Lab Results
  • Medical Signs

Sources for the revised ruling included:
  • CCC (Canadian Consensus Criteria)
  • ICC (International  Consensus Criteria)
  • CDC’s criteria (1994)
  • Past SSA experience

Symptoms (from CDC 94):
  • Profound fatigue 6 mos or more – persistent or relapsing
  • Memory or concentration problems
  • Sore throat/swollen glands
  • Muscle or joint pain
  • Unrefreshing sleep
  • PEM

Look for add’l symptoms (some of these are new):
  • Muscle weakness
  • Disturbed sleep patterns
  • Visual difficulties
  • Orthostatic Intolerance (OI)
  • Respiratory difficulties
  • Cardiac abnormalities
  • GI symptoms
  • Urinary or bladder problems

Require objective medical evidence to support doctor’s diagnosis:

Medical signs:
  • Swollen lymph nodes/sore throat
  • Tender points (from FM)
  • Frequent viral infections with prolonged recovery (new)
  • Sinusitis (new)
  • Extreme pallor (new)
  • Weight changes (new)

Laboratory Findings:
  • Elevated EBV titers
  • Abnormal MRI scan
  • NMH (new) – [my note: Oddly, they’ve included NMH here but not POTS – potentially a big problem for some patients]
  • Other findings, such as exercise test and sleep study (new)

Adjudicator should consider add’l findings as research continues to advance, for example elevated  HHV-6.

Look for co-occurring conditions such as:
  • FM
  • TMJ
  • IBS
  • IC
  • Raynaud’s
  • Migraines
  • Myofacial pain syndrome
  • Sjogren’s Syndrome
  • Chronic lymphocytic thyroiditis
  • New allergies or intolerances (new)
  • Sensitivities to noise, odors, chemicals (new)
  • Loss of thermostatic ability – chills, night sweats, intolerance of temps (new)

5-Step Evaluation for all SSD applications:
    1. Currently working?
    2. Severe impairment?
    3. Does impairment meet listing? (NO listing currently for ME/CFS)
    4. Can the person do past work?
    5. Can the person do any work?

There is no listing for ME/CFS which means that ALL ME/CFS applications will have to go through steps 4 and 5.…or could meet an existing listing for another condition, such as “undifferentiated or mixed connective tissue disease” under immune disorders listing.

A listing has the weight of law and takes longer to get through the system than this type of ruling. A ruling is binding for adjudicators but is not binding in a court of law.

Q&A

Could this ruling be a first step toward a listing for ME/CFS?
Maybe someday– need more research and eventually testing that can prove ME/CFS and indicate severity. SS would move forward as soon as there is medical evidence to support a listing.

Numbers for those with ME/CFS who applied for SSDI and those who were approved at various stages?
No current data available. Past data has been presented at CFSAC and should be available on their website.

Is exercise test or neurocognitive testing sufficient to establish disability?
Those would be sufficient to establish MDI, but establishing degree of disability will still rely on steps 4 & 5.

Tuesday, June 17, 2014

Movie Tuesday 6/17

Ah, I got all wrapped up in watching the CFSAC meeting online yesterday and today and didn't have time for a Movie Monday post, so here it is a day late. By the way, I learned some interesting things about revisions to the Social Security rulings for ME/CFS watching today's meeting, so I will summarize that for you in the next few days.

We watched a lot of movies this weekend because our youngest son (who doesn't like to watch much TV or movies) was away at the beach with friends, so the remaining three of us had a movie fest! With two men and me, it was back to action and suspense this weekend!

During the week, my older son and I painstakingly went through the Redbox listings from home, looking up titles on some of my favorite movie websites, to pick out one that all three of us would like. After all that research, we did enjoy the movie...but my husband pointed out that he and I had seen it before, a fact I didn't believe until the very ending! One of the benefits of brain fog.

Anyway, we watched Inside Man, a very clever caper movie directed by Spike Lee with an outstanding cast. Clive Owen stars as the lead bank robber in a big operation with dozens of hostages, while Denzel Washington plays his nemesis in the police force, a hostage specialist brought in for the case. Jodie Foster also stars as a highly-paid "fixer" for powerful and wealthy people whose role is not clear early in the film. The movie unfolds with plenty of suspension, as the small group of robbers hold a large group of people hostage and talk to the police. The criminals seem to have thought of everything. It's an elaborate heist, in which they always seem to be one step (or two or three) ahead of the police. If you like good twisty caper movies, this is a great one! We all enjoyed it (even though my husband remembered how it ended!).

Saturday night, the three of us settled in with Homefront, a suspense/action movie starring one of our favorite actors, Jason Statham (speaking of caper films, he was excellent in The Italian Job). Here, he plays an ex-DEA agent who broke up a meth operation in New Orleans by working undercover as a gang member and got the crime leader's son killed in the process. He and his adorable daughter have moved to rural Louisiana (he with a new name) in order to try to live a quiet life away from the nasty criminals who want him dead. Despite his efforts to lay low, he runs afoul of some locals with connections to the drug trade (James Franco plays a truly scary drug dealer), and before long, his old enemies are tracking him down. Surprisngly, this movie was written by Sylvester Stallone (I didn't know he wrote screenplays), based on a book, and although it is mainly an action-packed thriller with lots of fights, explosions, and gunfire, it also has plenty of heart and warmth. Statham plays a loving father just as well as he plays a tough guy, and the relationship between he and his daughter in the movie is wonderful. Again, we all enjoyed it...and this time, none of us knew how it ended!

Finally, on Sunday, we watched Jack Ryan: Shadow Recruit, a movie just released on DVD that we've all been waiting to see. It is based on the popular character from all those Tom Clancy novels. It's a bit confusing because Jack Ryan, a recurring character in the novels, has now been played by 4 different actors in 5 different movies! In this one, a prequel, he is played by Chris Pine, whom we all like. This is basically an origin story, showing how the famous secret agent was first recruited by the CIA for a quiet analyst's job and ended up as a top operative. Kevin Costner plays his boss, and Keira Knightly plays his girlfriend, so the acting was excellent. As you'd expect from a CIA/Jack Ryan movie, there is a lot of action and suspense (and car chases and bombs), but it is also a clever plot about using economic forces as a terrorist tool. Good entertainment.

Have you seen any good movies lately?

And have you ever watched a movie twice without realizing it??

Monday, June 16, 2014

CFSAC Meeting Live Online Today and Tomorrow!

Just a reminder that the latest CFS Advisory Committee meeting is taking place today and tomorrow in Washington, DC. The meeting just started at noon today and will continue through 5 pm today and then again tomorrow from 9 am to 5 pm.

You can watch the meeting live at this link.

Click the link on this page to see the agenda. Public comment periods are today at 1:30 pm and again tomorrow at 11 am.

They keep track of how many people watch from home, so this is an easy way to let your voice be heard!

Saturday, June 14, 2014

Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections

That's a pretty sweeping statement I made in the title to this post, isn't it? I certainly didn't start out with that point of view. I used to mentally roll my eyes at people who seemed to see Lyme disease everywhere they looked. But, over the years, I've met and heard from dozens and dozens and dozens of people who were originally diagnosed with ME/CFS and/or fibromyalgia who eventually (sometimes decades later) discovered they actually had Lyme disease and/or other tick-borne infections (either in addition to or instead of their first diagnosis). Of course, since all of these illnesses have under-funded research and get little attention from the medical community, there have been no actual studies on the subject, but the anecdotal evidence is overwhelming. Oh, and it happened to two of us in my own family, too.

I will provide details and links in the rest of this post, but here are the basic facts:
  • ME/CFS, FM, and Lyme are almost impossible for a patient to differentiate because they share so many similar symptoms. If you have joint pain, headaches, light sensitivity, severe brain fog, night sweats and/or any neurological symptoms, there is an even higher chance that you have one or more tick infections.
  • Most people with Lyme disease never noticed the tick bite - the ticks that transmit diseases are tiny, the size of the period at the end of this sentence. And only 40-50% of those with Lyme disease ever had the bulls-eye rash you hear about.
  • Studies DO show that Lyme is one of many known "triggering infections" that can cause ME/CFS to begin. Roughly 11% of those who get Lyme disease (just like mono and other triggers) go on to develop ME/CFS, whether their Lyme was treated or not. This means there are plenty of people who get both ME/CFS and Lyme (my son and I included).
  • THERE ARE NO ACCURATE, RELIABLE TESTS AVAILABLE FOR LYME DISEASE OR ANY OF THE OTHER TICK INFECTIONS. So, if you've been tested and the result was negative, that provides you with no useful information (though you can believe a positive result) - see details below.
  • Having Lyme disease is actually good news for many people with ME/CFS or FM because Lyme disease, though it can be difficult to treat, IS treatable. I have seen many cases where, once accurately diagnosed with Lyme and co-infections and treated, patients recovered either partially or fully and now live full, active lives, even holding down full-time jobs.
Ok, so the details...

Tick Infections
We are no longer only dealing with Lyme disease (if we ever were). Ticks carry at least a half dozen different infectious agents (often called Lyme co-infections) that can cause serious illness. Just getting a simple screening test for Lyme (as most doctors order) is not even close to enough. Other common tick infections include babesia, bartonella, ehrlichia,  mycoplasma, and Rocky Mountain Spotted Fever (there are others but these are the most common). One study in New Jersey that tested ticks themselves actually found MORE of them were infected with bartonella than with Lyme, but there are very few doctors who know anything about bartonella. This blog post I wrote a few years ago outlines the different tick infections and their primary symptoms (though I left out Rocky Mountain Spotted Fever, which is quite common).

We learned all of this the hard way. Our oldest son has had ME/CFS since 5th grade. In 7th grade, he got Lyme disease (for the second time), tested positive, and we treated it again, but this time he didn't recover fully. Although we had doubts, the doctor convinced us he had been fully treated, and we chalked his lingering symptoms up to ME/CFS. He gradually got worse and worse until he was finally diagnosed with Lyme, bartonella, and babesia in 10th grade, infections he'd probably had since that 7th grade tick bite. No one had ever tested him for co-infections, so his Lyme couldn't be fully eradicated. (Here's more information on our lightbulb moment when and how we realized he had bartonella).

"I Was Tested for Lyme, and It Was Negative"
If I had a penny for every time I've heard this statement, I'd be rich by now!  Here are just a few reasons why it doesn't matter that your test was negative:
  • The most common screening tests for Lyme (Western blot and ELISA) look for antibodies to the Lyme bacteria in your blood. Not everyone makes antibodies, and even if you do make them, they are not generally present until 6 weeks after infection.
  • Even more sensitive PCR tests which look for the actual Lyme bacteria are inaccurate because Lyme bacteria and the other infectious agents don't stay in the bloodstream - they hide in tissues and joints (hence, the characteristic joint pain). So, any and all blood tests are unreliable for detecting tick infections.
  • Therefore, if you get a positive result, you can believe it, but a negative test result for any of these infections provides no information.
  • One Lyme doctor explained to us that a blood PCR test generally finds Lyme when it is present about 65% of the time (not very good odds!). Spinal fluid tests are about the same, only with much greater risks involved in extracting the fluid, so stay away from those entirely. PCR testing done on fluid extracted from a swollen, painful joint is more accurate, but still comes up positive in only about 75% of the cases where infections are present.
So, it doesn't matter how many times you have been tested and had it come up negative - you could still have Lyme and you could certainly still have other tick infections. If you want to know more about why testing isn't reliable, here is an excellent list of 27 Reasons Why Lyme Tests Are Unreliable that explains it all in more detail.

If the Tests Aren't Reliable, Then How Do You Know If You Have It?
The only reliable way to know for sure whether you have Lyme and/or other tick infections is to be fully evaluated by a Lyme expert. Commonly known as an LLMD (Lyme Literate MD), he or she will evaluate you based on: physical exam, history, pattern of symptoms, and test results. They will send your blood samples to the best labs in the country and will test for ALL of the infections, not just Lyme. If any one test comes back positive, you know for sure you were bitten by an infected tick. Then, the LLMD can analyze your symptoms and history to help determine which infections you have. For instance, the tests for bartonella almost never come back positive (it hides even better than Lyme), but there are tell-tale symptoms, like bartonella "lines" on the skin or burning pain in the soles of the feet that only occur with bartonella.

Even the CDC admits that a Lyme diagnosis must be a clinical diagnosis (that is, diagnosed based on symptoms), so it's a mystery to me why so many doctors run one flawed screening test and then tell their patients they don't have Lyme.

Most regular doctors have barely even heard of the co-infections, let alone know what their unique symptoms are, so it is absolutely critical to see a LLMD. This website provides some great advice and links for finding a local LLMD in your area or region. Here's another Lyme doctor and Lyme test locator.

"My Doctor Says There Is No Lyme in My State/Country"
Even the CDC now admits that Lyme disease is rampant throughout the U.S. Last year, they issued a statement that their previous estimates of Lyme disease prevalence were probably off by a factor of 10, finally realizing and admitting that many cases of Lyme go unreported, and that the total annual number of cases in the U.S. is probably 300,000 or more.

Lyme disease exists in every U.S. state (I'm still not sure about Hawaii but definitely the other 49) and on every continent except Antarctica. A recent study found Lyme bacteria preserved in amber dating back 15 million years ago!

Anywhere that there are deer and mice (critical parts of the tick's life cycle), there are infected ticks.

You can't rule out Lyme disease based on where you live. However, if you live in the Northeast U.S., the mid-Atlantic, the Midwest, or Europe, you have a higher than normal chance of getting tick infections. A recent article explained that the number of tick infections reported in California is also rapidly growing. Despite official statements that there is no Lyme disease in Australia, I know of at least a half dozen Australians who have been diagnosed and are getting better on treatment. Tick infections are everywhere!

"I Don't Spend Time in the Woods"
It's a common misconception that Lyme only happens to outdoor enthusiasts who spend days out in the woods. Many people - probably most - get Lyme disease and other tick infections right in their own front yard. We see deer in our yard all the time, and we know there are mice around, too - that means infected ticks are present, too. 

One day last summer, I spent 30 minutes weeding our flower bed. I was sitting on our paved driveway on a towel, reaching into the bed, and I'd sprayed insect repellent on my legs. Later, I went inside to take a shower and found a tick attached to my scalp! Another time, I was again sitting and weeding (only way I can manage any weeding), only right in a bed of pine needles. That time, I found tons of tiny dots on my inner thighs. My poor husband had to pick 80 tiny ticks out of my rear, thighs, and ahem, other areas with tweezers. Those were the nymphs - the ones the size of a period at the end of a sentence - the ones that most often carry diseases.

This week, we were eating dinner when my son looked at me and screamed! There was a tick crawling up my neck. I didn't even go outside to get this one - it came into our house on a package that had been delivered to our front door. I thought I'd gotten rid of it earlier, but apparently not.

Lyme Disease is Often Misdiagnosed As Other Illnesses
Lyme disease is called the Great Pretender and with good reason. It is often misdiagnosed as ME/CFS or fibromyalgia (the joint pain makes this mistake especially common). Doctors also often mistake it for various forms of arthritis (it actually does cause arthritis if left untreated), MS, and even Parkinson's disease. Those last two might surprise you, but long-term Lyme causes neurological damage, so its effects can easily be mistaken for neurological diseases - you can't even tell the effects of MS and Lyme apart on a brain scan. Lyme disease can even be misdiagnosed as various mental illnesses. Even more surprising, right? But again, Lyme causes neurological damage and can trigger depression, bipolar disorder, and even schizophrenia.

Lyme disease even causes Orthostatic Intolerance (OI) and viral reactivation, just like ME/CFS does.

Some of the common symptoms of tick infections that can also occur in ME/CFS and fibromyalgia include joint pain, headaches, light sensitivity, severe brain fog, night sweats and/or any neurological symptoms. If you have any of these symptoms, then it is even more urgent that you be evaluated by a Lyme specialist for all of the tick infections as soon as possible.

How Can I Prevent Lyme Disease?
If you've been thoroughly evaluated by an LLMD and are certain you do not have Lyme or other tick infections, then you will definitely want to keep from getting it in the future. My family doctor always reminds me that just because I have ME/CFS doesn't mean I can't get something else! She wants me to always come in to check out any new or changed symptoms, and that is great advice. In fact, I DID get Lyme disease 5 years into my ME/CFS. I knew I had it because I had sudden onset of knee pain, where I'd never had joint pain with ME/CFS before, and nausea (another common Lyme symptom), and all of my "normal" CFS symptoms were much worse. Unfortunately, that's the way other conditions often present when you have ME/CFS - your regular symptoms just get worse. Every test I had for Lyme over the next 3 years came back negative, but my symptoms showed I had it. It took me over 3 years of antibiotic therapy to finally get rid of it.

So, if you do go outside, even just into your own yard, you want to prevent tick bites:
  • Always wear insect repellent, preferably one that contains DEET. You need a repellent that repels ticks as well as mosquitos. This Consumer Reports article shows which repellents they tested were effective against ticks. Though most contain DEET, they did find two "natural" repellents that worked...but most others do not. If you are concerned about DEET, wash it off when you come back inside. 
  • Wear light colored clothes and tuck long pants into socks. Ticks generally catch a ride starting down near the ground and then crawl up your body, so you want to be able to keep them out and see them if they are on you. If I am walking through grass or woods, I often spray just my legs and around my ankles.
  • Do a thorough tick-check when you come inside. Remember that the ticks that cause infections are tiny, the size of a poppy seed. When I got all those tiny ones on me, at first, I thought the one I saw was just a freckle! You want to check your skin carefully after being outdoors. This really works - we have found many ticks this way. They like close, warm, dark places, so check especially carefully under your arms, in the crooks of knees and elbows, in the groin area, and on the scalp (use a fine-toothed comb or feel carefully with your fingertips).
For more information on Lyme disease and other tick-borne infections, here are some reliable sources:

Tuesday, June 10, 2014

Hot Blooded

Yup, that's me, but it's not nearly as sexy as it sounds in the Foreigner song. Ever since I got ME/CFS 12 years ago, I have been almost constantly too hot. I asked my OB/GYN how on earth I'd know when I went through menopause when life has been one long hot flash for the past 12 years! I have a closet full of heavy sweaters that I never wear anymore. Even on the coldest days of winter, I wear lightweight layers so I can strip down when I get too hot. It's the same with my oldest son, who's had ME/CFS for 10 years. And summer is just torture for me.

Like most people with ME/CFS, all three of us in our family have lower-than-normal body temperatures. 97.5 F is normal for us, and none of us ever get a fever (well, 99 is about the highest "fever" we get), even with a bad infection - it's a joke with our family doctor.  So, I'm not sure how that translates to always feeling overheated. I guess our temperature regulation (part of the autonomous nervous system) is just off.

I can manage during the day, but this too-hot-all-the-time thing really gets to me at night, especially this time of year when the weather outside is heating up. I sleep really well in winter (with the help of meds to correct sleep dysfunction) because at night, we turn the heat way down - ah, heaven! Unfortunately, it's a lot more expensive to cool things down in the summer. Making matters worse, all of our bedrooms are on the second floor, which never cools down as much as the first floor.

Even worse, a few years ago, we bought a new mattress, not knowing that the top layer in it was that memory foam stuff. This has caused two problems - permanent indentations where my husband and I sleep (with a hill between us!) and the mattress holds heat like crazy. I get up in the middle of the night to go to the bathroom, and the spot where I was sleeping is actually hot to the touch.

We have tried all sorts of remedies. When my son started college two years ago in an un-air-conditioned dorm room, we bought a cooling gel mat for him. It works pretty well to keep things cool, but I found it too hard to sleep on. I like a nice soft, cushiony mattress on top, which is why we bought that stupid pillow-top in the first place. So, with the gel mat, I stay cooler but still toss and turn a lot. Last year, I tried a similar gel-cooled pillow. Again, it does stay cool, but it is super-firm, and I sleep best on a soft, fluffy pillow.

This time of year is the worst because it's not quite cool (or dry) enough outside to leave the windows open at night, but it's not all that hot yet, either, so the a/c hardly runs all night, and the air gets warm and stuffy. I have endured some very restless, hot nights lately, waking up feeling exhausted. That really wrecks me - normally, I sleep soundly for 8-9 hours a night (again, thanks to the meds).

So, last night, I gave in and turned the thermostat down a bit more and also switched the fan on the system from automatic to circulation, where the fan will go on periodically, even if the a/c isn't on itself. Much better! Though, I don't want to see the electric bill next month.

Anyone else have these problems? Anything work for you?

Sleepless in Delaware