Friday, April 11, 2014

The Methylation Cycle: Central to ME/CFS

I sat down to write a post about vitamin B12 supplements for people with ME/CFS and how much they have helped my son and I. I soon realized, however, that I couldn’t explain the importance of B12 without first explaining what the methylation cycle is and why it is so critical to those of us with ME/CFS (and similar illnesses). I’m no expert, but here is what I have learned:

What Does Methylation Do?
I already knew in a vague way that methylation was an important process in the body, but now I understand it is absolutely critical to multiple bodily systems. Before delving into exactly what methylation is, let’s look at its role in the body. Here are some of the vital functions of the methylation process:
  • Critical to the manufacture of DNA and RNA, the body’s basic genetic material;
  • Essential for several important neurological processes;
  • Required for the manufacture of adrenal hormones, which affect all sorts of bodily functions, including sleep, energy, temperature regulation, and neurological functions;
  • Responsible for several detoxification pathways, allowing your body to get rid of toxins, including excess medications, supplements, dead viruses or bacteria, as well as environmental toxins.

Almost everyone with ME/CFS (and many people with other similar illnesses) has a dysfunctional methylation process. It’s hard to tease out cause and effect because every one of our dysfunctional systems (immune, endocrine, nervous, etc.) causes further dysfunction in other systems. Put simply, ME/CFS is a very complex knot of vicious cycles where each problem worsens all the other problems. So, it is likely that the longer you have been sick, the worse off your methylation cycle is. In addition, the more health problems you have, the worse the methylation process gets (more vicious cycles), so someone like my son who has ME/CFS and also Lyme disease plus two other tick infections just keeps getting worse and worse – which is what we saw with him a few years ago and again this past year. Same goes for anyone with any kind of underlying infections behind their ME/CFS (which is probably most of us).

What Happens When Methylation Isn’t Working Properly?
So, if people with ME/CFS have messed up methylation cycles, what exactly does that mean? When the methylation process isn’t working properly, the following problems result:
  • Detoxification doesn’t work well (as explained above) so toxins build up in your body;
  • Less serotonin, dopamine, and melatonin (all directly linked to sleep dysfunction as well as depression) are produced, as well as less of other neurotransmitters;
  • Decreased production of adrenal hormones;
  • Elevated levels of homocysteine, which can lead to cardiac problems;
  • Decreased cellular energy production aka mitochondrial dysfunction, leading directly to fatigue and post-exertional malaise;
  • Possibly also an underlying mechanism for depression (see note on serotonin and dopamine above).

Take a look at that list again – notice anything familiar? It’s pretty much a list of most of the symptoms and dysfunctions that define ME/CFS! So, now you begin to see how important methylation is to each and every ME/CFS patient.

Methylation’s Role in Infections

Detoxification, one of the processes affected by methylation, becomes supremely important if you have underlying infections (as the majority of ME/CFS patients do) and especially if you are treating those infections. In that case, you need an efficient detox process even more, in order to remove toxins like dead viruses and bacteria and excess medications and supplements from the body.

Those with Lyme or those being treated with antivirals are familiar with herx reactions, where symptoms worsen (often severely) with treatment because the body is being flooded with dead bugs and extra medication that it can not properly get rid of, causing the immune system to react against the increased presence of viruses or bacteria in the bloodstream. When methylation is not working well (as in most with ME/CFS) and therefore detoxification pathways aren’t working well, the herx reaction can get worse and worse, until the patient is stuck in crisis mode – totally incapacitated by herx symptoms, even when the medication (antibiotics or antivirals) are severely reduced. That’s where our son was twice – first, at the end of high school a few years ago and again, this past year (sophomore year of college).

What Exactly Is Methylation?
This is where it gets somewhat complicated, but even a basic understanding of the methylation process will help you understand what kinds of treatments might help. Methylation is a biochemical process in the body that uses certain raw materials (foods, vitamins, supplements) to convert molecules into other molecules. When the process is working well, all those things listed above happen as they should: DNA, RNA, and crucial neurological components are manufactured; critical hormones (for sleep, mood, healthy adrenal function, and more) are made; and the body detoxes effectively, getting rid of those things that might be harmful to you.

I find the best way to understand the methylation process is to look at it visually:

(NOTE: Diagram is from an excellent article on B12 at ProHealth. Click on diagram to enlarge)

You may not recognize or understand all of the components, but this diagram shows how each step leads to another step and how interrelated the 3 different cycles shown here are to create the full methylation process. You can also see some of the important inputs to the process: proteins, amino acids, vitamin B12, folate & folic acid. And I think it is quite clear that if any one part of this process breaks down – for instance, there isn’t enough B12 or folate – then the entire process will fail, leading to the kinds of problems listed above.

What Can You Do?
Several methylation experts have emerged who understand the critical importance of the methylation cycle in people with ME/CFS and related illnesses and have made it their life’s work to try to help. Each of the experts has his or her own protocol, so there are some choices; however, they all rely on the critical components of the methylation cycle: vitamin B12 and folate (in various forms).

Dr. Amy Yasko is perhaps best known for pioneering a methylation protocol, designed to help repair dysfunctional methylation processes (and thereby improve the patient’s symptoms in a number of different areas). Interestingly, the focus of her work is in autism in children but it is equally applicable to ME/CFS (not the first time links between ME/CFS and autism have shown up). She has her own explanation of the methylation cycle, if you want to learn more, along with additional diagrams (more complicated than what I included here). Dr. Yasko advocates first getting some genetic testing done and then customizing the methylation protocol based on your results (more on that below).

With our son, we started with Dr. Rich van Konyenburg’s simplified methylation protocol, which I have written about here before. My son was in such terrible shape to start with that we had some difficulties, so I e-mailed Rich directly, and he was kind of enough to respond personally and help us through some of those challenges. Unfortunately, Rich died unexpectedly last year, leaving a big gap in our small world of expert ME/CFS resources. The last version of his simplified methylation protocol is available here, with an excellent Q&A on methylation written by one of Rich's colleagues here.

Typically, any methylation protocol begins with a good quality multi-vitamin, vitamin B12 (more on that in the next post!), and 5-MTHF, a form of folate. However – and this is critically important – anyone with ME/CFS should start very slowly with tiny doses and only gradually increase, as tolerated. Any of these supplements can cause their own sort of “herx” reaction, as they get the methylation process working again, suddenly getting detoxification working again and flooding the bloodstream with toxins. As with most things in ME/CFS, low and slow is the rule. For instance, our son started with just a quarter of a 5-MTHF tablet every other day, very slowly working up to his current dose of 400mcg per day.

Our son improved a bit on Rich’s protocol, but he was scheduled to start college in a month or so and was still too sick to manage it (as I mentioned earlier, his case is even more complex than most because of the 3 tick infections he is fighting along with his ME/CFS). Our Lyme doctor recommended a consultant who is a registered dietician and has an MS in biochemistry. She is brilliant and not only understands this complicated methylation process but also how that fits in with all the other complicated biochemical processes that are dysfunctional in ME/CFS and Lyme patients.

In the methylation arena, she ran a methylation panel for our son and made recommendations specifically based on his results. She also recommended dietary changes, in part because gluten, casein (the protein found in milk), and gliadin (another protein in wheat) can all block part of the methylation process. Also foods high in oxalates aren't good for people with ME/CFS (I don't fully understand why yet - still working on that one!).

With her help (and some other changes as well), our son recovered enough to start his freshman year of college alongside his peers, living on campus and taking 3 classes with enough energy left over for a social life. It felt like an absolute miracle to us, and treating the methylation problems was definitely a big part of that.

We discovered, however, that you have to be diligent to stay ahead of all the complex problems in ME/CFS and Lyme. After two months, our son gave up on the restricted diet (he was feeling pretty good by then). He kept up the folate and B12 supplements, and continued with his Lyme treatment and all of the treatments for ME/CFS. Eventually, he began gradually declining again, until he was back in crisis mode and completely incapacitated during this winter break (note: this was more than methylation problems but we could tell that was part of the picture). We got back in touch with our consultant, got him back on an even stricter diet (he was so sick, he was willing to try anything). He is again recovering, back in school living on campus, and able to enjoy a social life with his friends, too. Part of his recovery is due to treating yeast overgrowth caused by his Lyme treatment, and part of it is due to getting back on track with the methylation process.

To help with methylation and associated processes, he (and I) take the following supplements (links below), remembering that we added these very gradually and slowly:
  • 400 mcg 5-MethylTetraHydroFolate (5-MTHF) (we use Doctor's Best brand - but we followed Rich's recommendations at first until he got up to this dose and could take these capsules)
  • Xymogen ActivNutrients multivitamin with no Iron or Copper (rec by our biochemist - we buy it at cost through her office but there are online sources - apparently, it is important to leave out Iron and Copper when you have infections)
  • Xymogen ALAMax and Resveratin to assist in mitochondrial energy support (I take a different brand of alpha lipoic acid and Jamie is currently off ALA temporarily while we get his yeast problems under control).
  • Calcium D-glucarate for detox support
  • S-Acetyl Glutathione for detox support and energy (studies have shown people with ME/CFS to have low glutathione levels)
  • N-Acetyl Cysteine (NAC) - Jamie is off this temporarily until his yeast problems are gone, but I increased my dose after reading that 1200 mg per day can help with weight loss (it did!) plus it is critical to detox and liver support in ME/CFS.
  • Milk Thistle - brand varies, taken at end of day and helps with detox - critical for liver support.
  • Vitamin B12 - Hydroxycobalamin injections 1000 mcg twice a week (Jamie); daily combination B12 product for me (more on B12 in the next post)

More recently, my son and I both had genetic testing done through 23andme (maybe I need another post on that!) and ran our results through Genetic Genie to find out what genetic defects we each have relative to methylation. A couple of problem areas showed up for each of us, so our next step is to work with our biochemist consultant to understand what the genetic results mean and how to adjust the methylation protocol accordingly (as Yasko recommends, too).

This post turned out much longer than I had planned, but it is a complicated and important subject. Next up is a post on the use of B12, including importance, uses, dosing, types, etc. From what I’ve read, it seems that everyone with ME/CFS can benefit from vitamin B12 supplementation, but it has to be done right in order to be effective. That one is already half-written, so I hope to post it here within the next week. Please share your own experiences with treating methylation and/or questions in the comments area. I am still learning about this critical part of ME/CFS, and I’m sure others would benefit from comments and questions also.

NOTE: Someone reminded me that I didn't mention SAMe in this summary. if you look at the diagram above, you can see that SAMe is a part of the methylation cycle; however, it is not recommended that all people with ME/CFS supplement with SAMe. My son tried it and got worse. Here's the way that Rich Van Lonyenburg explained it to me:

"This was initially included in the protocol I proposed, but so many people could not tolerate it that I took it out.  SAMe will come up automatically if the partial block of methionine synthase is lifted by the methylation protocol.  I think that some people have difficulty dealing with all the sulfur if given NAC and SAMe.  The sulfur must all pass through the sulfite oxidase reaction, and if it can't handle it, sulfite builds up and gives headaches, difficulty in breathing, and/or rashes.  It also further lowers glutathione."

One of the common genetic defects related to methylation causes an inability to metabolize sulfur compounds, and this is relatively common in people with ME/CFS (both my son and I both have this defect and have reacted badly to sulfa antibiotics), so perhaps this is part of the reason why supplementing with SAMe sometimes makes ME/CFS patients worse. So if you do try it in spite of Rich's warning, watch for negative reactions which may worsen over time.

Wednesday, April 09, 2014

PET Imaging May Provide Diagnostic Test for ME/CFS

An exciting new research study published in Science Daily shows that PET functional imaging may be a useful diagnostic tool for ME/CFS in the future. It was a small study - just 9 people with ME/CFS and 10 healthy controls - but researchers were able to clearly show evidence of neuroinflammation (inflammation of the nervous system and brain) in the ME/CFS patients. They could even see a clear correlation between the type of symptoms reported (for instance, cognitive dysfunction) and the areas of inflammation in the brain.

This is exciting research that could lead directly to a way to diagnose ME/CFS! It remains to be seen whether this method is specific enough to differentiate between ME/CFS and other conditions that cause neuroinflammation, but at the very least, it provides incontrovertible proof of disability and illness.

Best of all, the study was reported in the mainstream media! I got this link from a childhood friend of mine who thought of me when he read it and sent me an e-mail. That alone is reason to celebrate - awareness is growing!

Monday, April 07, 2014

Movie Monday 4/7

Our college son was home on spring break all last week. He's been doing pretty well, thanks to the drastic changes we made to medications, supplements, and diet two months ago. That's "pretty well" on an ME/CFS (and Lyme) scale, so he is still struggling with stamina and cognitive functioning. But he's living on campus, taking three difficult engineering courses, and has some energy left for socializing and having fun with his friends. This was a rest-up and recuperation week for him - he spent much of the week reading (about 8 books in 10 days!), playing video games, and catching up on all the TV series he's missed while at school.

So, we didn't watch any movies last week, but I thought I'd tell you about all the great TV shows we caught up on - both old favorites of ours and some really great new shows.

In the old favorites category, he was excited to be home so he could catch up on missed episodes of Arrow, The Following, Elementary - we all enjoy these shows together and he tries to keep up when he comes home on Sundays.

My husband was out of town last week, so the boys and I also tried some new shows. All three of us watched The 100, a brand new post-apocalytpic/dystopian/science fiction show set 100 years into the future, after earth was decimated by nuclear holocaust. The remaining humans have been living in a space station, but now they are in danger of running out of oxygen. They send 100 teenagers (most are criminals to one degree or another) back down to earth to find out if it is safe to live there again. We are all enjoying the show (my husband caught up when he came home and joined us in the latest episode) - it's full of action and adventure.

Jamie and I also tried Believe, and we LOVE it! It reminds us a bit of Touch (which we hated to hear was cancelled), with a young child with special talents at its center. In the first episode, we lost track of how many different group of people were after this poor little girl! So, this is another show full of action and adventure and lots of chase scenes but also plenty of warmth and heart. The little girl playing the lead role is amazing. We are totally hooked, and this is our new favorite.

Jamie had friends over two evenings, and I discovered that it was Watchathon Week for our cable provider, meaning that many of the channels (even the pay ones) put whole seasons of their most popular shows up for free On Demand for the week. I watched a couple of episodes of Girls (which airs on HBO) and would love to see more - I'll have to request the DVDs from the library. When Jamie discovered Watchathon Week, he dove into Black Sails, a new pirate show on Starz.

I'm glad to have my husband back home now - he and I have too many shows that we're hooked on at the moment! We are enjoying some old favorites like The Good Wife (did you see that surprise ending??), Grey's Anatomy (he's not so interested in it anymore, but I still love it), The Americans, Revolution, and Blacklist (I told you there are too many!). We've also started to watch Resurrection, about a town where the dead start returning, just as they were before they died, which we are loving.

That seems like a lot of TV, but I am pretty useless past 6 or 7 pm, so it is something fun we can do together before we head up to bed to read at 9 pm.

What are your favorite TV series right now?

And if you are interested in what we've been reading this week, check out the Monday post at my book blog.

P.S. I am still learning but am so far enjoying Twitter and haven't let it take over my life! If you are on Twitter, you can follow me at @livewithmecfs

Monday, March 31, 2014

Movie Monday 3/31

Finally got our power back! It was out most of the day today, due to high winds, but came back on just barely in time for me to make dinner (my older son and I were starving because we had to make do with a cold lunch and are eating a restricted diet right now - so much for those yummy Chinese leftovers!)

We went away this weekend for a mini getaway - it was the only 48 hours we had with all four of us alone together until summer! Crazy, right? That's the hectic schedule that's been causing me so much stress lately. So, we squeezed in a little vacation to St. Michael's, a lovely little town on Maryland's Eastern shore, about two hours from here. We stayed at a fabulous inn (something we couldn't afford in the on-season!) out on a point of land, surrounded by water on three sides.

Unfortunately, it was dark and rainy the entire weekend! We had that gorgeous view and couldn't see much beyond the raucous waves of the bay. To make matters worse, my youngest son came down with a sinus infection and bronchitis before we left town on Friday, and I had to run him all over, squeeze in a doctor's appointment, and get him started on antibiotics. So, he felt awful on Saturday...and so did I, probably from all the stress and running around Friday! We made the best of it, though - hunkered down in our nice room, rented a video from the nearest Redbox, and watched it on my son's laptop. We also managed some great meals, a little bit of walking around town, and some fun card games in the evening. Not quite what we'd had planned, but it was still time spent alone together with no distractions.

The movie we watched was Percy Jackson: Sea of Monsters, the second movie in the Percy Jackson and the Olympians series, based on a popular series of middle-grade books by Rick Riordan. We all listened to this book on audio together on a road trip many years ago, but none of us remembered much about it, except my oldest son who has an incredible memory for books! The basic idea behind the series is that Greek Gods are alive and well in the 21st century. They sometimes get together with humans, creating "half-bloods," kids who are half-human and half-God. These kids are in danger from mythic monsters, so they stay at Camp Half-Blood, an area that's protected by a powerful magic (I think it's out on Long Island if I remember the books correctly). In this second book/movie, the protective barrier has been breached, putting all the campers at risk, and it is up to Percy and his friends, Grover (a satyr) and Annabeth (daughter of Athena), to find the mythical Golden Fleece and fix the barrier. Like the first movie, it's got nonstop action, lots of mythical creatures, and a good sense of humor. My older son was annoyed that the story sometimes veered significantly from the plot of the book, but all in all, it was a fun bit of entertainment on a rainy sick day. It's rated PG, so it's a good family movie to watch with somewhat younger kids (though probably a bit scary for the under-8 crowd).

Have you seen any good movies lately?

Wednesday, March 26, 2014

Learning to Live with ME/CFS Now on Twitter!

Yes, I have finally joined Twitter...kicking and screaming and dragging my feet! I swore I would never do this - just because I am already doing more things than I have time or energy for - but I was kind of forced into it, so I will give it a try.

A good friend told me about a very cool Writer Residency program that Amtrak is sponsoring - they will pick 24 writers to win a free trip on Amtrak (from 2 to 6 days) in a sleeper car. The idea is to promote the arts while also promoting Amtrak. It sounds great to me - I can always use some uninterrupted writing time, and this opportunity comes with a bed for resting!  So, I filled out the form, wrote my answers to the short essay questions, uploaded a writing sample...and then found that the site wouldn't accept my application until I entered a Twitter handle. Really? Yup, Twitter was a requirement. I suppose they just want to get the maximum PR from the free trips they are giving away, and apparently, blogs are just so 2013.

So, I bit the bullet and signed up for Twitter - finally. The Twitter handle for this blog is @livewithmecfs, so go look me up! So far, I have zero followers. I got further annoyed with Twitter when it required me to pick at least 15 Twitter feeds to follow before it would sign me up. Sheesh. I don't like being forced to do things! ha ha

I'm sure I will end up enjoying Twitter. I just need to be careful not to let it get too time-consuming. I had just started making some progress in the past week in taming my e-mail and Facebook obligations and trying to limit my time spent on those. Back to square one.

What have been your experiences with Twitter? Any advice on keeping it from taking up too much time? I don't have a smart phone and mainly just use my cell phone to keep in touch with my husband and kids. I really don't like the idea of being constantly "on call," so I will probably check Twitter online for now. Any suggestions for this newbie are welcome!

Monday, March 24, 2014

Movie Monday 3/24

As I posted last week, I got away for a mini "me retreat"for a couple of days. I didn't feel great while I was away, so I rested and enjoyed the lack of responsibilities. I did manage a little writing, lots of reading, and plenty of TED talks (I don't like eating alone, so I watched TED talks during meals!). And I indulged in a couple of girly movies I knew my husband wouldn't be too crazy about. All in all, it was a good movie week:

Although they are not movies, I'll include the TED talks because I watched some really good ones last week. I worked through most of this What Makes Us Happy playlist and really enjoyed all of the talks. Some were so inspiring that I started taking notes so I wouldn't forget what I'd heard! If you are looking for some inspiration and joy, check out these talks on happiness - some are very thought-provoking, some are funny, and all are interesting.

Now for the fun fluff...the first movie I watched on my own was The Answer Man, a romantic comedy. I chose this one because I was looking for something light and fun, and I really like Lauren Graham (and it was free on Amazon Prime!). Graham plays a struggling single mom named Elizabeth who is trying to start her own chiropractic business and is very over-protective of her young son. Jeff Daniels play a reclusive author named Arlen Faber with problems of his own. He wrote a best-seller 20 years earlier about his close relationship with God, but since then, his inspiration has completely dried up. He's become a cranky, difficult man who rarely leaves his home or talks to anyone...until he hurts his back and literally crawls through Elizabeth's office door. I really enjoyed this movie, and it was better than I expected it to be. The great thing is that I was undecided whether to watch a fun movie or an inspiring one, and this was a little bit of both, since Arlen's spiritual quest is a big part of the plot.

I was very indecisive the next night and had trouble picking a movie, until it was getting late and length of the movie became a critical factor! I chose Two Lovers, starring Gweneth Paltrow and Joaquin Phoenix. Joaquin plays Leonard, a man struggling with mental illness (should have been my first clue that this wasn't really light); he seems to be manic-depressive with suicidal tendencies (the opening scene shows him considering suicide). He's had to move back in with his parents (his mom is played by Isabella Rossellini), a nice older Jewish couple living in an apartment in Brighton Beach who are worried about their son. They try to set him up with a nice Jewish girl, the daughter of a business associate, and Leonard does like Sandra. However, he is drawn to his bad girl neighbor, Michelle, played by Gweneth Paltrow. Michelle is clearly a poor choice for Leonard, with some major issues of her own, but his attraction to her is strong and passionate. It's a good movie overall (how could it not be with that cast?), but it is quite dark and depressing. Not quite the light and fun flick I was in the mood for, but a very well done melancholy drama.

Back home, my husband and I watched American Hustle, one of many recent DVD releases we've been dying to see. Our 16-year old son watched some of it with us, too, though he wasn't really in the mood for sitting still! Christian Bale and Amy Adams (like you've never seen her before - this is not the sweet princess from Enchanted!) star as Irving and Syndey, a con-man and his girlfriend who get caught by the FBI and are forced to help with a sting operation to catch bigger fish. Bradley Cooper plays Richie, the FBI agent in charge of the operation who keeps seeing the possibility to catch bigger and bigger fish, as the operation rockets out of control. Jennifer Lawrence also stars (a long ways from Katniss!) as Irving's wife. All of this is set in the 70's, with fabulous fashions and hairstyles also starring (you must see Christian Bale's comb-over and Bradley Cooper in perm rods!). This is a fabulous movie from start to finish, with an all-star cast, an intriguing plot, and great acting. Highly recommended.

Have you seen any good movies lately?

P.S. If you are also interested in what we've been reading this week, check out the Monday post on my book blog.

Tuesday, March 18, 2014

Alone At Last!

As I explained here recently, I had a mini mental breakdown last week. No big deal - just one of the occasional downs that go along with the ups in this rollercoaster life of chronic illness. I was feeling overwhelmed (what's new?), stressed, and frustrated, and I over-reacted to a well-meaning family member. I broke down in sobs for a few minutes, then wiped my tears away and got back to the business of life: taking care of myself and my family.

At the same time, since the beginning of the year, I have been trying to make some improvements in my life in terms of time management and organization. Over the past year, I realized that I'd let various obligations and responsibilities take over my time. Much of that has to do with helping other people: those newly diagnosed, those who've been sick for decades and have never had any treatment, and especially, parents of kids who are struggling with chronic illness, like my own. All of this is very, very important to me, but the e-mails, group interactions, blogs, etc. were easily expanding to take up all of my available time. My writing - even here on my chronic illness blog! - has definitely suffered, as has my peace of mind.

So, I had a lightbulb moment last week and decided that I needed to get away for a quiet respite...SOON. A quick look at the cluttered calendar showed that I couldn't just pick up and go - soccer and school commitments, doctor's appointments, deadlines, etc. stood in the way last week. But this week looked relatively open in the middle, so before I could think of excuses, I talked to my husband (who was supportive, as always - he doesn't like to see me fall apart either!) and asked a good friend (who also has medical problems and a sick child so she gets it) if I could borrow her family's condo at the beach for a couple of days. This wonderful friend texted me the door code immediately and said, "Go and enjoy it!"

So, a little preparation, rescheduling, and packing and a week later, and here I am! I arrived at noon today, picked up a giant Thai Chicken Salad from Panera, and settled into the very quiet condo by myself. It's not very nice beach weather (we got 4-6 inches of snow yesterday and it is cold and overcast today), but I'm not really here for the beach anyway. I am hoping to recharge and recuperate...and also get some writing done, without that lengthy to-do list in front of me.

Leaving for a mini getaway like this is always an amazing feeling. I finally got everything packed this morning (I don't travel light, as I'm sure you can understand!) and settled into the car (the nice, newer car with cruise control and a CD player - oooh!). Of course, the moment I pushed the button to put down the garage door, my college son texted me that he thought his bronchitis was back and his phone battery died. I almost laughed out loud at the timing, but instead I texted back where his antbiotics were (after running back into the house to find them), what time he could meet up with his dad at the house, and where to look for the new shipment of probiotics due in today. Then I gave myself a little pep talk that he'd be fine without me, and I left.

Driving away from all of my obligations and responsibilities is so freeing! I used to experience the same thing when I'd travel for business, that feeling of freedom and of only being responsible for myself. Truly amazing. I enjoyed listening to my audio book during the almost-2 hour drive down here, though I had to keep rewinding because my mind would wander to those waiting to-dos and my family's needs.

The funny thing is that once I finally arrived, I felt kind of lonely! I know, you are probably thinking I am nuts, but my normal daily life with chronic illness is pretty isolated, and I am naturally a very social person. I'm sure you can relate to this - I use up all of my limited energy taking care of my family and myself, and there is rarely enough left for social interactions. It had only been a few hours, and I was already missing my husband (hi, honey!) who is often the only adult I see during a typical day (not counting my best friends at the pharmacy).

So, I am adjusting to the quiet and solitude, and it is growing on me. I was pretty wiped out after packing, driving, and carrying all my stuff up to the second-floor condo, so after lunch, I took my usual afternoon nap. I woke up feeling achy and worn out, dragged myself out of bed, and went to the bathroom. Then I thought, "Wait a minute. I can do anything I want to do - there's nothing I have to do." With that revelation, I grabbed a cup of hot herbal tea, a new book, and crawled back under the cozy down comforter and nestled back into the fluffy pillows. Getting back into bed in the afternoon - what a concept!

I am planning to rest more tonight and hopefully feel well enough to tackle some long-neglected writing projects tomorrow - and maybe even take a short walk on the beach.

I am very grateful to both my friend and my husband for allowing me to have this mini getaway/writing retreat.

And, hey, if you have any suggestions for girly movies that my husband would hate, let me know! I may just relax and watch a movie on amazon tonight.

Monday, March 17, 2014

Movie Monday 3/17

Happy St. Patrick's Day!

Things have been so busy these last weeks that I skipped a Movie Monday (or two maybe?).  I've barely had any time at all for writing blog posts and am horribly remiss at visiting other blogs (even my favorites lately - sorry!), but I am taking steps to try to get more organized and manage my time better. The problem is that answering e-mails and participating in groups for ME/CFS has really grown to take up a lot of my time. Helping other people is very important to me, but I need to find a way to be more efficient and balanced. Anyway....that was a bit off-topic.  So, movies!

Last week, we watched The Heat with our 16-year old son. He and I picked it out, and my husband wasn't thrilled with our selection! He thought it looked stupid...and still thought that after watching it! Normally, he and I don't go in for the goofy, slapstick kind of comedies, but I have to admit that I really enjoyed this one, as did my son! It stars Sandra Bullock (I am a big fan of hers) and Melissa McCarthy as mismatched police officers teamed up together (reluctantly) to bring down a crime lord. Bullock plays an uptight FBI agent who strictly follows the rules and has devoted her whole life to her career. McCarthy is a local Boston PD officer who plays loose with the rules, dresses like a slob, and swears like a sailor. Some of the comedy of their being paired up is predictable, but I thought the best parts of the movie are the scenes that bring the two of them closer together (aw, come on, you knew that would happen, didn't you?). Lots of action in this movie, a bit of suspense, and a whole lot of laughs! As long as swearing doesn't bother you, this is a great movie for a bit of laugh therapy.

This weekend,  the three of us watched Catching Fire. Our son was lucky enough to see it in the theater on the first day it was released, but my husband and I hadn't seen it yet (and we both read and loved the book). This is the second movie in the series based on The Hunger Games trilogy, starring Jennifer Lawrence, who is as good as ever here. We all loved the movie. The plot stuck pretty closely to the book (except for a small detail toward the end but nothing important), and the acting and costumes were just as amazing as in the first movie. This is a visual feast about a dystopian society where the government keeps its citizens in line with an annual fight to the death, in which the participants are children and teens, chosen through a lottery, and the entire horrifying contest is televised for mandatory viewing. Katniss and Peta outsmarted the Games in the first book/movie, but their quiet life of leisure doesn't last long, as citizens of the districts become increasingly rebellious, and the government looks for ways to get them back under control. As with the first movie, this one is violent but also thought-provoking and intriguing. It is action-packed but with plenty of good dialogue, excellent acting, and astounding costumes and sets.

Have you seen any good movies lately? 

Thursday, March 13, 2014

Bitterness, Resentment, and Forgiveness

With all that's been going on with my son's worsened medical problems, plus all the usual challenges of my own, things have been tough for me lately. I have been feeling even more overwhelmed than usual, my to-do list packed with medically-related urgencies (call doctor #1, fax doctor #2, e- mail doctor #3, order supplements, refill prescriptions, pay bills, etc., etc.). In addition, at this time of year, I am usually planning and looking forward to some fun vacations for our family - spring break, a 3-week summer road trip, a few camping weekends - but I realized that this year, between my younger son's soccer and school schedules and my older son needing to take a class during summer session (and none of their school breaks matching up), we don't have a single full weekend when the four of us can be together until mid-July....and then we will only have about two weeks when there is nothing else scheduled. It was a depressing and frustrating realization.

Feeling so overwhelmed and with no breaks to look forward to really pushed me past my limits. I was talking to a family member, hoping for some empathy, and instead I got some breezy throw-away advice, including "been there, done that." These interactions just added to my stress and sent me over the edge. I got so angry and fed up...and of course, those negative emotions only made me sicker. It's a vicious cycle.

I've written here before about the challenges of helping friends and family to understand the bizarre world of chronic illness that we live in, a world where every moment of every day is ruled by The Illness and where positive-thinking aphorisms often just don't apply. I know I am fortunate. My immediate family - my husband and my two sons - of course understand because they are living with the very same restrictions and limits (mine as well as some of their own). And my closest friends who live locally also understand - some of them are dealing with their own health issues (with themselves or their kids) and others are just wonderfully compassionate people who have spent enough time with me to "get it."

The bigger challenge lies with my extended family, none of whom live in the local area. They only see us a few times a year, so they don't understand the daily restrictions and limits that rule our lives. They see us for a couple of days when we are pushing ourselves to keep up and enjoy our time with them and don't see the resulting crash afterward. I wrote a bit about this in my post, The Invisible Illness. I thought that after 12 years of my living with chronic illness, they at least understood to some degree. But they don't. They think that my life, as a wife and mother with two teens, is the same as their lives are/were. Sometimes, they think I have it easier because I "don't have to work."

Most of the time, I try to make the best of the limited times that I spend with my family, ignore the minor misunderstandings, and maintain good relationships with my family members. Early on in my illness, I went through some very difficult times with my family, as I explained in this post on family. Many of my family members struggled with denial at that point, and things got bad and really hit bottom. It's better now (with most of them), and I decided that having relationships with my family was very important to me. All I need to do is think of one of my oldest friends, who lost her mom to cancer when we were just teens who once said to me when I was complaining about my mother, "I would love to have my mom around to drive me crazy." She's right, and I try to remember that and keep things in perspective.

I also know that negative emotions like anger, bitterness, and resentment not only eat away at me - like they do with anyone - but also make me much sicker. I've seen that effect first-hand many times, including this week. Re-reading this blog post about misunderstandings and misperceptions helps - it reminds me that sometimes the problem is mine, not theirs, and that I need to be careful not to jump to conclusions. I know all that rationally but sometimes my emotions still get the best of me.

So, I try hard to let go of bitterness and resentment, and I try to remember how much my family means to me. But sometimes, like earlier this week, it's just so hard to do. I've also noticed that I tend to be hardest on the people I love the most. Feelings of resentment tend to spring up most with my husband and my mother - the two adults I love most in the world. Why is it that we are able to be so much more forgiving and understanding with casual acquaintances and we expect so much more from those closest to us?

I know I need to learn better how to let go of resentments and how to forgive and forget, but I don't know how to get better at those things! If anyone out there knows of any good books or other resources on these topics, I would love to hear about them.

Thursday, March 06, 2014

To-Do List Blues

Imagine some blues music playing in the background...

I'm just feeling frustrated this week - here it is Thursday afternoon, and I feel like I have done NOTHING at all this week! We had our big Mardi Gras party on Saturday (not so big these days but still a major event for me and our only major entertaining event all year), plus house guests all weekend, so I was moderately crashed for the first half of this week. In some ways, moderately crashed is worse than totally crashed. When I'm in really bad shape, I give in and stay in bed or on the couch. When I'm just feeling moderately crappy and achy all over, I can't help still trying to get stuff done and feeling guilty for not accomplishing anything.

When I made my weekly to-do list on Monday (the only thing I actually finished on Monday), I labeled it "Catch-Up Week." With my older son managing a bit better and the Mardi Gras party behind us, I figured I would devote the week to catching up on all the half-finished, rather urgent stuff that needed to be done and has been languishing on my to-do list for months: figure out the new insurance system and finally pay all the medical bills piled on the counter, write up all the changes we've made for my son the past month and e-mail/fax the summary to all his doctors, write some long overdue book reviews, write some long overdue posts for this blog...well, you get the idea.

Instead, I have crossed nothing off my list all week! I've barely managed to get through each day, plus taking my son to a doctor's appointment. Oh, and my older son, who was doing better, texted me on Monday that he was badly crashed with a sore throat (probably a viral trigger), so he came home for a while. I did finally feel better today, but I had to use that precious energy to get groceries. It is so frustrating to me that running to the store for an hour uses up all of my energy for a full day! I'm not complaining because I know some of you would love to be able to go to the grocery store at's just frustrating.

To make matters worse, I started off the new year by reading a book about time management and meeting your goals, so I was all mentally motivated and thought things would be different this year! I know...I have a bad habit of thinking I can do more than I really can. I was like that even before I got sick, but it's even worse with such low energy and stamina.

Well, venting and ranting a bit helps. Thanks for listening.

Tuesday, March 04, 2014

Happy Mardi Gras 2014!!

Happy Mardi Gras!

Today is the final day of the 2014 Mardi Gras season, which is a reason to celebrate! We used to live in New Orleans, so this is one of our favorite holidays of the year, but anyone can join in the fun.

Here's a Weekend Cooking post from my book blog this weekend, with lots of ideas on how to celebrate Mardi Gras, with foods you can either cook or buy, plus some fun links.

And here's an older post from this blog, all about the Joy of Celebrations - making room in your life to celebrate things big and small, to add joy to a life currently focused on restrictions and limits.

I am off to post some old Mardi Gras photos for my friends and then to a friend's house for our annual Popeye's dinner, to celebrate Mardi Gras with several of the people who used to live in New Orleans when we did.

Hope you are all having a fun Fat Tuesday!

And, if you're reading this too late to celebrate Mardi Gras, start decorating and planning because St. Patrick's Day is only 2 weeks away - another great excuse to celebrate!

Saturday, March 01, 2014

Adventures in Eating: Paleo and Anti-Candida Diets

I am way behind in writing an update here of my son Jamie and how's he doing since we made all those drastic changes to his diet, supplements, and medicines a few weeks ago. In fact, I am overdue in writing any posts at all here. Even though Jamie did go back to college, I have still been focusing most of my time and energy on his medical issues (researching, learning, shopping for specialty foods, cooking in a whole new way, trading e-mails with our biochemist/dietician consultant, and more). Also, I am still struggling to understand some of what's behind all this, but I will share what I know so far and what we have learned.

First, as I mentioned in my earlier post, the very strict diet Jamie is on was designed specifically for him by the biochemist/registered dietician we are consulting with. He has a very complicated mix of problems: ME/CFS, severe methylation problems, Lyme disease, plus two other tick-borne infections (bartonella and babesia), and long-term yeast overgrowth (plus other problems) from years of constant antibiotic use. So, I am definitely not recommending this diet for anyone else - it's pretty drastic and focused on his individual needs right now. Here are some of the reasons behind the restrictions (anything in quotation marks comes directly from our biochemist/consultant):
  • No sugar and no grains because they feed yeast, plus the biochemist/dietician says "they are also mitochondrial and brain poisons."
  • No dairy, gluten, or oats because casein (protein in dairy), gluten, and gliadin (protein in oats) block one of the methylation pathways. "Dairy also inhibits the uptake of cysteine by neurons which impairs the neuronal production of glutathione. Considering the brain and its neurons is the most aerobic organ and glutathione the most important antioxidant, the brain becomes subject to severe oxidative stress. Casein also blocks the reduced folate receptor and the transport of reduced folate into neurons." (I told you she was knows a lot!)
  • Only pears for fruit because "Pears do not contribute to a yeast overgrowth.  Neither do they ferment."
  • Legumes, tree nuts, whole grains, and certain vegetables are also on the No list because they contain oxalates. I don't fully understand yet why oxalates are bad for Jamie (and possibly me), but she said "oxalates and yeast are partners in crime." This has been a tough one here at home because we normally eat a LOT of beans (and they are also not allowed on Paleo - see below).
My son has kept up this strict diet for the past 3 weeks. As you can see from my earlier post, all he can eat is meats, eggs, about 10 different vegetables, 1 pear a day but no other fruits, seeds (like pumpkin seeds and sunflower seeds), and whey protein a bit of chocolate but with very little sugar. Avocado and coconut are both OK, too, but he really hates both of those! No grains at all, though I have been experimenting a bit with coconut flour. He needs his Sunday morning pancakes (this recipe for coconut flour pancakes is pretty good - they don't taste like regular pancakes but when you've had no grains all week, they are still a treat - I put diced pears in them. I also added lemon juice to the coconut milk in order to mimic buttermilk and give the baking soda something to combine with). He has been managing this on campus each week, as he is able to review the menu ahead of time and special-order whatever he needs. So, for instance, if the dining hall is serving BBQ pork for dinner, he can ask for the pork without the BBQ sauce. The pasteurized egg mixture they normally use for scrambled eggs and omelets has milk in it, but he can request fresh eggs each morning.

Generally, he has been eating scrambled eggs with some sort of breakfast meat for breakfast and meat and vegetables for lunch and dinner (unfortunately, he is ordering green beans at every single meal since it's his favorite!). The dietician encouraged him to eat between meal snacks - something he doesn't normally do. She said it's important to give the mitochondria a steady stream of fuel and not "starve" them for long periods between meals. For snacks, he has been eating natural jerky (with no nitrates or sugar), seeds, his one pear a day, and whey protein shakes (flavored plain whey protein powder mixed with water, with only stevia as a sweetener). When he comes home on Sundays, we have those coconut flour pancakes for breakfast and usually steak (his favorite), green beans, and pureed cauliflower for dinner.

Meanwhile, here at home, my husband decided to try the Paleo Diet, in part for moral support and in part because he's wanted to try it for years for weight loss. The Paleo Diet is basically eating the way prehistoric man ate, lots of fruits and veggies, lean meat, nuts, and seeds, with no grains or processed foods and only natural sugars. So, I have been cooking Paleo for dinners here at home and eating mostly Paleo myself while still sticking to mostly no sugar (I still eat a few whole grains, like oatmeal for breakfast 2 or 3 times a week because I feel better when I do). Here's a Weekend Cooking post I wrote on my book blog last week about our Paleo dinners, including a few tasty, easy recipes.

In addition, much of my time has been taken up with experimenting with various chocolately treats for my son (and my husband and I, too). I have tried two different grain-free, dairy-free brownie recipes. These coconut flour brownies were pretty good, though a bit dry (coconut flour is very dry and absorbs liquids like a sponge!) - they are more cake-like than brownie-like. I didn't follow the recipe exactly because it calls for 3/4 cup honey or maple syrup - WAY too much sugar for us. The only sweeteners he is allowed to have are a small amount of coconut sugar or maple syrup and a small amount of stevia (though stevia is actually good for Lyme disease, our biochemist says it is bad for mitochondria). So, I substituted 1/4 cup maple syrup and then made up the liquid with an extra 1/4 cup coconut oil, melted, plus 1/4 cup coconut milk. I also added about 2 oz. unsweetened baking chocolate, melted, for additional chocolate flavor and liquid.

Last weekend, I tried these Avocado Brownies (not telling my son they contained avocado, of course!). We all liked these better - the avocado keeps them more moist. Again, I had to sub out some of the sugar. I used only 1/4 cup of maple syrup, plus 1/4 cup of unsweetened coconut milk, and a couple of teaspoons of stevia to make up the sweetness. Like I said, there's been a lot of experimentation! My kitchen has been a chocolate laboratory the past few weeks.

One experiment that didn't go so well was cooking with raw cacao nibs. The dietician told me they melt. I can say with great authority that they do not melt! We tried everything - microwaving, stovetop, and oven, following her instructions carefully. What came out of the oven every time was a  burned, smoking mess...and still individual, hard nibs. I finally gave up on those, and sent my husband to the grocery store for unsweetened baking chocolate. It contains nothing but chocolate, so the dietician gave it the OK.

With that more familiar ingredient, I have been able to make my son all kinds of chocolate treats (fortunately, our whole family loves very dark chocolate). I melt a package of baking chocolate (4 oz), add in a tablespoon or two of coconut sugar, plus a teaspoon of stevia, stir well and melt more (the coconut sugar remains a bit gritty) and then use the chocolate mixture in a variety of ways. I have made plain dark chocolate bark (pour it out onto wax paper and let it harden then break it up), chocolate bark with sunflower seeds and pumpkin seeds mixed in - that's become my son's favorite treat! - again poured out onto wax paper then broken up when it hardens, and my proudest achievement, sunflower butter cups. My son loves peanut butter, and his favorite treat is peanut butter cups, but peanuts (legumes) are off the menu.

These took some further experimentation. I bought some disposable aluminum tiny muffin tins at the grocery store. First, I drop balls of sunflower butter onto bits of plastic wrap covered with cooking spray, using a melon baller. I wrap each one up, pop then into the muffin tray, and freeze them (this process is the only way I found to keep the sunbutter from spreading out). Once they are solid, I melt the chocolate and add sweetener as I described above, pour a bit into each muffin spot, unwrap the sunbutter balls and put them in the liquid chocolate, then add more melted chocolate on top. Finally, pop them back into the freezer to get solid. Then, they go into plastic baggies, and Jamie keeps them in his mini fridge at school. They are delicious! And now, my son will eat sunflower butter which he wouldn't touch before.
Step 1: Drop balls of sunflower butter onto pieces of plastic wrap covered in cooking spray
Step 2: Wrap up balls of sunflower butter and put into holes of a tiny muffin tin to freeze.

Step 3: Cover balls of sunflower butter in melted chocolate...the finished Sunflower Butter Cups!
So, that's what I've been doing lately! Now you know why I haven't had time to write much - I've been in the kitchen with my fingers covered in chocolate.

Oh, I forgot to tell you the bottom line. Besides the diet, Jamie also quit all antibiotics (including herbals) for several weeks, as described in my earlier post, to give his body a chance to heal. The biochemist says that antibiotics cause damage to our mitochondrial DNA. We increased his Diflucan (anti-fungal for yeast) from 1 a day to 2 a day (200 mg total). Last week, we just began adding antibiotics back in, as his Lyme symptoms began to increase, starting with oregano. The plan is to slowly, gradually add stuff back in.

With all that...he's been feeling pretty good! His energy is better, brain fog is clearing up, and he's managing his 3 classes (including 2 labs) every week at school. He finished his Calc 3 final which was hanging over him from last semester, he's felt well enough to hang out with his friends again (I almost cried with joy when we brought medication to him on campus last week and he said he wasn't in his dorm room, he was in the student center playing ping pong!), and he's even done a little bit of exercise, though he recognizes he needs to take that slow. All good news so far...which is why he's been willing to stick with such a strict diet. The biochemist/dietician wants him to stick with it for another few weeks, to make sure this isn't just a honeymoon phase and the improvement is here to stay, then she will add a few of the lesser bad guys back in.

Oh, and me? Well, I've had a good few weeks, too. I'm not sure if it is due to the partial Paleo Diet (I wasn't eating much sugar or white flour anyway and haven't had dairy for years) or simply that I got my own yeast overgrowth under control (through double Diflucan plus dietary changes) last month. It is very possible that I've been living with behind-the-scenes yeast overgrowth for years without realizing it.

I'm very interested to hear your own experiences with dietary changes, whether Paleo or anti-candida or other trials.

Monday, February 24, 2014

Movie Monday 2/24

We had a busy week last week, but the good news is that everyone is doing pretty well health-wise! My time has still been filled with medical related to-dos, but I do hope to find time to write here this week and bring you up to date on our crazy dietary adventures and other topics.

Meanwhile, it is Movie Monday!

We only had time for one movie this week. On Friday, after a long week, we rented Red 2 with our 16-year old son. He'd already seen this one with his friends at the theater, but he's been wanting to share it with us for a long time. He is a huge fan of the original movie, Red, and we enjoyed it, too. If you missed that one, it was a gem - an action movie with a great sense of humor and an all-star cast, about a group of retired government assassins whom are targeted by the CIA because they know too much. Red 2 is the sequel, with a few of the original cast members (John Malkovich, Bruce Willis, and Helen Mirrin) who are once again pulled out of retirement...this time to both save themselves and the world. It was good but not as good as the original. There is still plenty of action - LOTS of shooting and fighting - and a sense of humor, but it just wasn't quite as entertaining as the first one. We enjoyed it - it was good for a bit of fun Friday night fluff - it just wasn't excellent. Best for action buffs or fans of its all-star cast (this one also included Catherine Zeta Jones, Mary-Louise Parker, and Anthony Hopkins, who, as always, plays insane perfectly).

Have you seen any good movies lately?

Monday, February 17, 2014

Movie Monday 2/17

Finally - I have a little time to write a Movie Monday post!

We've seen a few movies the past couple of weeks. Two weeks ago, with both sons at home (and lots of snow days) and my husband out of town, the boys and I indulged in two 80's/90's classics, both featuring Robin Williams, a favorite of my sons (and mine!)

First, the boys and I watched Good Morning, Vietnam. If you've never seen this classic about the Vietnam War, it is well worth the time! Robin Williams stars as a radio disc jockey assigned to the military's Saigon radio station in 1965. He's a total cut-up (a perfect time for plenty of Williams' free-form zany improv), but as he begins to settle in and gets to know both the locals and the young Americans being sent into the jungles to fight, things take a more serious turn. Both boys liked it, though I don't think they expected its serious side. It's a warm, touching, and very funny film.

In our Robin Williams' double-feature week, we also watched Good Will Hunting, another classic that they'd never seen. This is another one to go back and watch if you never have or an excellent movie to revisit after about 15 years, as I did. It was the movie that propelled both Matt Damon and Ben Affleck to stardom (my sons loved that backstory - how Ben and Matt in real life were best friends from South Boston who wrote this movie, sold it to Hollywood, starred in it, and have been ever-rising stars ever since). In the movie, they play two best friends from "Southie" (South Boston, a blue collar area). Matt's character is brilliant but gets into a lot of fights, frequently gets arrested, and works menial jobs. At one of those jobs, as a janitor at MIT, he solves an unsolvable math problem left on a blackboard and draws unwanted attention to himself. After yet another arrest, he is teamed up with an MIT math professor and must go to court-ordered therapy with the math professor's old friend, played by none other than Robin Williams. This is a more serious role for Williams, without his usual manic energy and improv; it's a wonderful movie overall. Both of my sons enjoyed it, and I was glad to have watched it again.

Fast-forward to a totally different environment this weekend, with our older son back to college, our younger son on a school-sponsored ski trip, and my husband and I alone - a truly rare occurrence! We treated ourselves two 2 newly released DVD rentals that we have really been wanting to see:

Friday night, we watched Ender's Game, a movie we had hoped to see in the theater but missed (as usual). Ender's Game is a favorite book at our house, one that my husband lent to me more than 25 years ago when we were first dating and that our older son read a few years ago and loved also (he did get to see the movie at the theater when it came out!). It's a classic science fiction story (originally published as an adult novel but more recently marketed as YA) about a young boy named Ender who is recruited by the military to attend a special battle training school in space. Earth was previously attacked by an alien species, the Formics, and narrowly defeated them. This time, Earth's leadership has a new strategy: to train young kids/teens in the latest battle technology, building on their superior dexterity, hand-eye coordination, and other skills honed by playing video games. It is an amazing, thought-provoking book about the morality of war, and the movie adaptation was very well-done. We both enjoyed it very much. I hope they make movies of the rest of the series (which we both read decades ago)! (NOTE: This is a movie about war, but most of the violence is high-tech video game-type stuff).

And on Saturday night, Ken and I watched another movie that our oldest son had seen with his friends at college and recommended to us, Captain Phillips. This is the movie based on the real-life story of Captain Phillips, a commercial cargo ship captain whose ship was boarded by Somalian pirates. Wow. It is a compelling and engaging story, with suspense and tension right from the first scene to the last. Tom Hanks does a fabulous job as the captain, as does his counterpart, the Somalian "captain" of the pirate crew who are being forced to hijack ships by a powerful warlord in their country. The movie shows you their perspective and the lack of choices the Somalians have, but your sympathy remains with Captain Phillips and his crew. Interestingly, I read that none of the Somalians starring in this movie were professional actors - they were all recruited from among real Somalian citizens...and they all did an amazing job with their roles. It's an excellent movie, but be prepared for plenty of tension.

So, we've watched some really great movies the past two weeks, both old and new. Have you seen any good movies lately?

Saturday, February 08, 2014

Extreme Yeast Battles & Timing of Supplements

I wrote previously here about our - both my older son and I - recent battles with yeast overgrowth. I am doing much better now, as I mentioned in my recent post on our sugar-free diet, but my son, who has been on antibiotics for over 3 years (so far) for Lyme disease, is still in terrible shape. Through the whole 2-month long winter break, he has been mostly incapacitated - totally exhausted, no energy, severe cognitive problems, and increased Lyme symptoms (herx reaction). We tried a lot of things, as indicated on my yeast post, but nothing was helping. In fact, we stopped all antibiotcs - both prescription and herbals - last week, and he still kept getting worse. He is supposed to move back to campus tomorrow for the spring semester, but that seems impossible at the moment.

So, this morning, we consulted again with a biochemist/registered dietician whom had helped our son before - in fact, she helped him improve enough to start college last fall. She has a Master's degree in biochemistry and is unbelievably smart when it comes to all these complex biochemical processes - methylation, infections, immune disorders, mitochondrial dysfunction - all that big mess of interacting stuff that we with ME/CFS and Lyme disease deal with every day.

We learned a lot today, as we always do when we meet with her, including some things for the yeast overgrowth that I've been doing wrong. A lot of it has to do with WHEN he takes certain meds and supplements - I had that all messed up! Here's a summary of what we learned about timing:
  • I knew to separate probiotics from antibiotics by at least 2-3 hours. We take probiotics before breakfast and before dinner and antibiotics (both herbal and prescription) at lunch and at bedtime.
  • Caprylic acid, Grapefruit seed extract, Pau D'Arco (all common ingredients in anti-yeast supplements) also have antibiotic properties and also must be taken well away from probiotics. We have been taking all of these along with our probiotics, effectively killing off the good bacteria before it has a chance to do any good! These will all move into the lunchtime meds box.
  • Activated Charcoal (important for detox, especially in people with Lyme and other infections experiencing herx reactions) acts like a sponge, absorbing whatever it comes across. I was also putting this into the same medicine boxes with the probiotics and the anti-yeast stuff, further rendering his probiotics useless! She suggested he take 2 charcoal supplements an hour or two after eating lunch (and taking lunchtime meds).
  • Chlorella - also intended to help with detox - is similar to the charcoal, so I switched it to the same 1-2 hours after lunch, plus more with dinner meds.
  • She also recommended taking most of the energy support supplements with breakfast and lunch, early in the day when he will get the most use out of them. This includes cognitive support, magnesium, acetyl-L-carnitine, and CoQ10.
  • She suggested grouping all of the fat-soluble meds together at dinnertime, along with the omega-3 fatty acids (we use krill oil capsules), so multi-vitamins (one at breakfast and one at dinner), vitamin D3 (we were taking them multiple times a day - now they are all in the dinner meds).
  • We also switched all the milk thistle into the dinnertime meds (they also help with detox and with liver function).
I spent all day today figuring this out and re-doing his weekly medicine boxes (and changing some of mine, too).

To help our son get "unstuck" and past this horrible incapacitated state he has been in, she also suggested some drastic changes for this coming week:
  • Super-strict anti-yeast diet: no sugar, no grains at all, no fruit except for 1 pear a day, no beans (a tough one for us - we eat a lot of beans!), only certain veggies (no starchy veggies, corn, or peas), and no legumes or nuts. Yeah, that doesn't leave much! Especially for a 19-year old boy who normally eats lots of whole grains, bread, cereal, oatmeal, fruit, and peanut butter. He will basically just live on eggs, meat, pears, and certain veggies this week. He is seriously upset about this, BUT willing to try anything to feel better at this point. The idea is to remove anything that could promote yeast growth and eat a super-clean diet for a brief period of time to make a fresh start.
  • Keep up homemade lemonade for additional detox support (fresh lemon juice, water, bit of stevia, and electrolyte drops for sodium and potassium for OI) - 32 oz per day, which we've been doing all winter break.
  • Also, for this next week, stop everything that is antimicrobial (all the yeast supplements listed above, oregano, olive leaf, and antibiotics.
  • And, for this next week, eliminate supplements that support sulfur production (alpha lipoic acid and N-acetyl cysteine are the two she mentioned that he normally takes).
  • We're leaving in the 1 Diflucan a day, and if he's feeling better by the end of the week, we will add all the anti-yeast stuff back in (at lunch), switch to an alternating "cocktail" of prescription antifungals, and very gradually add the antibiotics back in, as he can tolerate them.
That's the short-term plan. Once we get the yeast overgrowth under control, then we will focus once again on methylation because it is clear from the way he is reacting to antibiotics that his methylation process is once again severely messed up.

It's a lot to absorb and a lot of changes to make at once, but we are hoping this will all help him get back on his feet. I only wish I'd contacted the biochemist back on January 1 for her advice, so we could have done all of this while he was living at home - the super-strict diet will be very tough to maintain on campus. I also feel like I wasted a couple of months (plus a lot of money!) by taking all those supplements at the wrong time of day. But regret does no good for either of us...moving forward and hoping for better days ahead!

NOTE: This super-strict diet was recommended specifically for my son and his individual health problems which include not only CFS and yeast overgrowth but also Lyme disease, bartonella, and babesia plus very severe methylation problems.

I am not recommending this diet for anyone else but was only sharing my son's experiences and what we are trying for him. Any changes to diet or supplements should be discussed with your own doctor.

For those interested in just a basic anti-yeast diet, this Candida Diet website has some great information.

Thursday, February 06, 2014

The Sugar-Free Life

As I explained here recently, my 19-year old son and I have both been battling yeast overgrowth. For me, it's a matter of past treatment for Lyme (finished 2 years ago!) still affecting me; for him, he has been on antibiotics (for Lyme, bartonella, and babesia) for over three years now and is no where near finished. As you can see from that earlier post, we have tried a wide variety of remedies. I was already on a sugar-free diet, but it was a hard sell for a 19-year old college boy! He felt so bad, though, that by January 1, he was ready to give it a try. Here are some of the challenges and successes we have encountered in going sugar-free.

I knew when we started out that Stevia was our substitute of choice. A recent study showed that it is actually effective in killing off Lyme bacteria in its biofilm form (I would link to the study, but they've removed the summary until it is officially published). This is huge news! So, Stevia is a two-for-one deal for my son: not only a natural sugar substitute but also helps against Lyme. However, I discovered it's not that simple.

Commercial sugar-free products rarely contain Stevia. So, not being picky about which substitutes were used (since we don't buy or eat many commercial sugar-free products anyway), I found a sugar-free brownie mix at the grocery store that is actually pretty good - even my husband and younger son didn't mind it. Having brownies greatly reduced my son's feelings of deprivation! Our store only had one brand of sugar-free cookies, and they were OK, but my son thought they weren't good enough to bother with.

I was eager to try some sugar-free baking, but I quickly learned that you can't just leave out ALL the sugar in baked sweets, like cookies or brownies (my son's favorites). Sugar adds more than sweetness - it affects volume (substitutes like Stevia tend to be far sweeter than sugar and require much less to sweeten), browning, and texture. It's chemical reaction, and you can't just leave the sugar out. I have tried! I did find one website with mostly sugar-free cookie recipes (the author uses a tiny bit of brown sugar plus Stevia). We tried the chocolate cookies, and they were OK but not great. The texture isn't quite cookie-like; they are very crumbly (I might try adding a couple of egg whites next time as binder and extra liquid). My son actually gobbled them up - he was so desperate for cookies! But I found the bitter aftertaste of the Stevia a bit off-putting. A friend of mine recently told me she bakes sugar-free using unsweetened applesauce (they have hypoglycemia problems) - I'm not sure how the yeast would react to the fructose in the applesauce but might try that.

My son's #1 priority was ice cream, his favorite sweet treat. We quickly learned that all sugar-free ice creams at the grocery store contain sorbitol, a sugar substitute that is fine for some people, but some - like my son and I - have rather severe GI responses to it! Our first bowls of sugar-free ice cream sent us both racing for the bathroom. Even my son isn't willing to put up with that for ice cream. We were very fortunate to discover that our local dairy (that makes the BEST ice cream in the world!) makes a sugar-free ice cream with no sorbitol. They are normally closed during the winter, but I sent them a desperate e-mail message, got a very kind, quick response, and made arrangements to stop by their office (in the middle of a snowstorm!) to pick up 3 quarts of sugar-free vanilla. With that on hand, my son can have brownies with ice cream (his favorite), a root-beer float made with diet root beer (again, we don't drink enough diet pop to worry about it), and even crumbled sugar-free peanut butter cups with ice cream (his own invention). He is much happier.

The sugar-free chocolate category is another where we've been successful. Both Reese's and Weight Watchers make sugar-free peanut butter cups (my son's favorite), and they are both excellent. Whitman's makes lots of sugar-free chocolates, but they are mostly milk chocolate (which brings us back to the GI problems again, since we are both lactose-intolerant). Besides, I greatly prefer dark chocolate. Normally, that's all I eat in the chocolate department: super-dark, pure (no milk products) chocolate. Whitman's Pecan Clusters aren't too bad, their mint patties (dark chocolate!) are good, though I prefer my chocolate straight-up, without fillings. I found the Whitman's chocolate-covered caramels had too much of an aftertaste. My favorite is Weight Watchers Double Chocolate Mousse - sugar-free, dark chocolate, and quite yummy! I found them at our grocery store (though it took some searching).

It was difficult for us both to give up fruit and I have since learned that our bodies react differently to fructose than other forms of sugar, so we are both now having about one serving of fresh fruit a day. Alas, I could not get my son to give up his morning OJ - it was the one thing he refused to do. I tried Prop 50, a reduced-sugar brand that uses Stevia, but he didn't like that. So, I've at least cut him down to just a half cup of OJ in the morning. Our other compromise is Sunday morning pancakes, a long-held tradition in our family. I do make our pancakes with whole wheat flour and Stevia (though the buttermilk has some natural sugar in it), but in our house, we have always used real maple syrup, so he still has that on Sundays.

After being off abx (I had to take them twice in the fall for bronchitis) a while plus taking Diflucan, I am feeling much better. I am sticking to the mostly sugar-free diet because this last bout of yeast overgrowth was really bad, and I don't want to backslide, but I am cautiously adding in a bit of fruit and on occasional square of real dark chocolate (not much sugar in it anyway).

So, that's been our experience with eating sugar-free so far - the ups and downs! If anyone has any advice to offer, especially on baking sugar-free, I would love to hear it. What has worked for you?

Tuesday, February 04, 2014

WEGO Health Activist Award Nomination

I was very honored to hear last month that this blog had been nominated for a WEGO Health Activist Best in Show Award! Unfortunately, between my own challenges and my sons' medical problems, I haven't had time to even tell anyone about it until now.

Anyway, the award nominations are open for voting now, so if you have found my blog useful, you can vote for me at this link.

And thank you for eight years of kindness, encouragement, and support!

Monday, February 03, 2014

Movie Monday 2/3

Another very busy, somewhat overwhelming week. Son #1 is still home from college for winter break - had a few good days last week and then crashed badly again. Son #2 was home for a few more days recovering from his recent knee surgery, then returned to school - he is doing great! We needed a win.

Anyway, before the flurry of Superbowl excitement (and actually flurries today), we took some time out on Saturday night to enjoy a DVD together:

We watched True Lies, a classic Arnold Schwarzenegger movie from 1994. My husband had seen it before and thought the kids would like it - he pitched it as an action movie with plenty of humor. He was right, and it was entertaining. The big man plays a spy in a top-secret government agency (their motto is "The Last Line of Defense"), but his wife, played wonderfully by Jamie Lee Curtis, thinks he is a boring salesman. Curtis' character is the classic ugly-duckling housewife - conservative hairdo, big glasses, staid outfits. She works as a legal secretary while her husband is off saving the world in secret. Of course, it all blows up (figuratively and literally) in farcical ways! There was a lot of gunfire, plus car chases and explosions, but the film is a lot of fun. The kids enjoyed all the action, and we all enjoyed the humor.

Have you seen any good movies lately?

Saturday, February 01, 2014

I Used to Have a Social Life...

I went to a party last night! Nothing super-exciting, just a retirement party for colleagues that my husband was hosting for two friends from his group who are retiring. There are five people total in his group retiring in the past two months, so there have been a lot of these! I have missed all the others, but since my husband was hosting this one and I knew both guys, I made an effort to go and rested all day in preparation.

Even though it was my husband's work colleagues in an office lobby, I had fun! It felt sooo good to get dressed nicely and get out of the house and among normal people. I even polished my nails yesterday (a rare treat and a gorgeous deep blue) and put on make-up! I felt like a real live girl.

I am naturally a very social person, and I had forgotten how much I enjoy just being out among people, talking. I miss that kind of lively, regular interaction. I was healthy until age 37, and I used to be very busy socially. I was kind of a wild party girl in my teens and twenties and loved parties.

Thankfully, I sowed plenty of wild oats back then, so it's not so bad living a quiet life now. I lived in New Orleans when I first got out of college, back when I could easily stay out all night and then go to breakfast in the morning! And after we moved up here to Delaware, my husband and I loved to throw parties. Any excuse would do - we had dinner parties, hosted family holidays, New Year's Eve parties, etc. Our annual Mardi Gras party grew into the highlight of the year for friends - before I got sick, we'd have 50 or 60 people there each year! Now, we can only invite 10 or 12 of our closest friends, and even that is a huge undertaking for me...and pretty much the only party we host all year.

So something as mundane as the office party last night felt like a big deal!

Still, even though I was glad to be there, all the usual challenges persisted. First, of course, is simply that just about everyone else was drinking. That doesn't seem like such a big deal anymore, though I do miss having a flavorful beer or a glass of wine. I just chug down my water.

Then there are the many dangers of the buffet table. It was bad enough just being dairy-free (do you know how many typical party foods contain cheese, sour cream, or cream cheese? Pretty much all of them!). Now, with these yeast problems, I am also no-sugar, so that was an added challenge last night. I realized that almost all dipping sauces contain sugar - I looked down the row - BBQ sauce, honey mustard, cocktail sauce...guess I'll eat my chicken tenders plain! Thankfully, there were some delicious mini crab cakes and guacamole and tortilla chips, two favorites of mine.

The most challenging part of going to a party, though, is that everyone is standing up the whole time, even if there are chairs around. I walked in last night, and that's the first thing I noticed (with a silent uh-oh in my head) - dozens of people all standing and chatting and no chairs. I found a folding chair that I sat in much of the time, but that creates other problems. You can't circulate around to talk to people if you are sitting, and it's not much fun to sit alone in the corner. Some people that I knew did seek me out in my chair, but then you have the awkward situation with everyone else standing and you sitting, at eye level with their belt buckles (and worse!). It doesn't help that I am short to begin with.

At one point, I threw caution to the wind and walked over to talk to a few people I knew. I was enjoying the conversation, but within a few minutes I started to feel lightheaded and sick. The beta blockers help considerably by keeping my heart rate in the normal range, but I could still feel the blood pooling in my legs. I started the classic OI routine - moving my legs around, flexing my toes, moving from one leg to the other, trying to keep the blood circulating - but then I probably looked like I had to use the bathroom! I told my husband, I had a strange moment of looking around at the rest of the crowd in awe, thinking, "How on earth do they just stand around like this for hours?"

But, like I said, I did enjoy myself. It was nice to get out and break up the old routine for one evening, and I enjoyed catching up with people I hadn't seen in many years. I managed to stay from 5:30 until almost 8:30 (it helped that everyone sat down in a conference room for the last hour, while they feted the new retirees). I had fun, but the main emotion I felt as I sat down in my car to drive home was relief! It was so lovely to get home, make a cup of herbal tea, and take my usual evening place, lying on the couch....ahhhh!

The only problem is that even though I can't drink alcohol, I woke up this morning feeling hung-over! I will definitely need to take it easy the rest of this weekend, but it was nice to be reminded of my old self.