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!