Homework Discussion: Lyme’s, Poop and Meditation.

Did you read those New York Times articles? I picked them for a reason. The Lyme disease one is obvious ~ whether or not we have a positive test for Lyme disease, we all seem to be suffering similar symptoms and I, for one, will always wonder if I have Lyme’s even though my test was negative. There is a treatment for Lyme disease (although it doesn’t always work and it has major risks) and that makes it an somewhat attractive answer. We all spend so much time hoping for a positive test to something that is treatable. Yes! I have anemia! Yes, I have sleep apnea! Anything that can be treated and might help…

Which brings me to the next article. One of the scary side effects of long-term antibiotics (used in the treatment of Lyme disease among other conditions) is dangerous gut dysbiosis and potentially fatal infection by clostridium difficile (C. diff). Stool transplant (fecal microbiota transplantation) seems to me to be a no-brainer in these situations. I heard an NPR show that said it’s not routinely used and not well known because, among other reasons, it doesn’t involve big pharma. You need a donor and a blender and what drug companies make money off that? I have consistently shown a lack of good bacteria in stool samples and high levels of certain bad bacteria. The Good Doctor has worked tirelessly to help turn this around (probiotics, hateful diet, and supplements such as the latest: glutamine) to no avail. The first thing she told me in our first appointment was that most of the immune system is in the gut and this will be an important point of focus. That was the first time I had ever heard that. Oh, what I didn’t know last year! Recently, I have read a lot of articles on the gut microbiome and ME/CFS, too: all of these on Health Rising, Borody et al study, Sanjay Shukla study, Cheney article… It has occurred to me that it’s only a matter of time before I beg for a fecal transplant.

Finally, meditation. I wrote about Meditation as Medication a while ago and I still practice every single day. And it is still probably the number one thing I’ve done to help my situation. My brain is like a wild, bucking stallion, with crazed eyes and heaving lungs, rearing back against the ropes, throwing itself against the walls of its enclosure. It stampedes around with no concern for its own well being… catastrophic thinking, suffocating fear, desperate desire… It keeps me awake at night with dreams of health and happiness that turn into nightmares as I fall into fitful sleep. My brain has taken up the activity that my body lost ~ and it feels just as exhausting. Meditation reins in my thinking~ calms and focuses it. There is hope and confidence in the stillness beneath the rodeo and the thing that has been most revolutionary for me is the reminder that I am TINY ~ I am a speck in this universe and a nanosecond in time ~ but I am also HUGE because I am connected to all energy and all life. I’m insignificant in the grand scheme of things, but it’s the grand scheme that eases suffering. I’m not alone and, in that interconnectedness, there is significance. I’m one of billions that suffer and we can all hold each other up with mutual compassion.

Here are some of my favourite free meditations:

  • Yoga Nidra Podcasts (I’m adding these after a tip from Jess at My Journey Thru ME. Some are abrasive to anyone and some are annoying just for someone with my idiosyncrasies (for example, imagining hot/cold polarities when I spend my life trying to maintain a stable temperature is in no way comfortable)): Here is the first one that popped up on my search and I really liked it. I LOVE the chakra element in this one ~ it would be great to do while lying on grass ~ especially if you’re into grounding/earthing.
  • Anything Jon Kabat-Zinn (here‘s one on YouTube. There are some podcast episodes of his meditations, too)
  • Jonathan Faust (I like his podcast, which has half hour meditations and helpful longer talks on things like fear and pain)
  • Tara Brach (she also does these longer talks)
  • Audio Dharma (a lot of these are difficult for me, but there are some gems)
  • Meditation Oasis podcast (dependably soothing)
  • Excel at Life (they have apps, too)
  • The Meditation Podcast (uses binaural beats, so use headphones)

Doctor, Doctor, Gimme the News

I couldn’t decide whether to use this Robert Palmer song for my title or the equally cheesy and almost as ancient Thompson Twins song: Doctor, Doctor, can’t you see I’m burning, burning… Have to say, I like the latter better, but I don’t currently have a fever, so it didn’t win out. 🙂

I wrote this post yesterday before I launched into the exciting day of driving myself to appointments. It’s kind of unfinished, but I’ll publish it anyway and get on with resting up…

I got the results from the saliva and stool sample tests that I sent off almost a month ago. I don’t have the hard copy results in front of me yet, but the doctor called me yesterday and I took furious notes. Here’s the wrap up:

  • IgA antibody tests for milk and eggs were negative and gluten was 4 (he said they consider below 6 negative). These results could be because I am not sensitive or they could be because I am sensitive, but I haven’t eaten any of these foods in 7 months (almost a year for gluten) ~ and I’ve been very strict with no cheating. Soy came up as “equivocal”, meaning not negative but not a strong enough reaction to be positive. He suggested I stop eating soy to give my gut the maximum opportunity to heal in case it is causing inflammation or reactions. I don’t eat soy a lot, but the things I do eat with soy, I really don’t want to give up: namely, Vegenaise (I can’t have the eggs in regular mayo) and soy creamer in my tea (I’ve tried all other options ~ soy creamer is the best mimicker of milk in my black Irish tea). He said I have to watch out for soy lecithin, which is in a lot of processed food. My Earth Balance fake butter has soybean oil and soy lecithin in it, so he said I could probably use butter since people with dairy sensitivities usually do fine with butter (just to be clear: I don’t know if I have ANY sensitivities to foods, I am just doing this diet to help my gut heal, decrease systemic inflammation and increase good bacteria).
  • DHEA was 6 with a range of 3-10. He said that indicates that I am no longer in severe adrenal fatigue.
  • 17-hydroxyprogesterone was 22 with a range of 22-100. He said this indicates that I am in a high cortisol output state, but, because my DHEA isn’t extremely low, he thinks my adrenals still look okay.
  • H. pylori was low = negative.
  • When my stool was cultured for yeast, it was negative.
  • Estrodial was 8 with a range or 2-10.
  • Progesterone was 45 with a range of 20-100.
  • Chymotrypsin (a digestive enzyme component of pancreatic juice) was 12 with the range being >9. The doctor interpreted this as showing my digestive enzymes were okay and my pancreas is working.
  • No signs of parasites or infectious disease-causing bacteria like Campylobacter, Shigella, Salmonella, E. coli etc.
  • Levels of two enzymes (lysozyme and alpha-lactalbumin, I think?) that the gut produces when it’s irritated were low = good.
  • My bacterial balance still indicates gut dysbiosis, unfortunately (which, by itself can lead to immune dysregulation and both can lead to mitochondrial dysfunction). I am still low in friendly gram-positive bacteria and too high in gram-negative bacteria. He said I am doing everything right (bowel help, elimination diet and probiotics), so he is not sure why this is not getting better. But, he said keep doing what I’m doing.
  • The other significant result was the salivary cortisol test:
    • Morning = 16 Range 13-24
    • Noon = 10 Range 5-10
    • 4pm = 8 Range 3-8
    • 12am = 7 Range 1-4
      • Apparently, my pituitary is turned on all the time and my cortisol is not going down enough at night, which is probably why I am not sleeping well. He suggested taking phosphorylated serine (a supplement called Seriphos made by Interplexus), starting with half a capsule an hour before bed. He said this is an amino acid that will help turn down the cortisol.
  • Lastly, he said I should avoid genetically modified foods by trying to choose organic fruit and veg as often as possible. I kind of scoffed at avoiding GMOs, mostly because I didn’t want to think about ANOTHER thing to avoid, but he gave me a speech about what scary gene manipulations are being done and how many studies are suppressed by big money (ie: Monsanto), so… okay, I’ll take it more seriously. [There is such a ton of shocking information out there, that this subject needs a separate post all to itself.]

THEN I had an appointment with my new sleep doctor. I love him, thank god. Once again, I spent a few days this week weeping from the burden of this disease. Lack of sleep not only increases all the symptoms of ME/CFS, but it also causes the usual black fuzzy cloud of irritation that healthy people experience when they don’t sleep. My friend Z., who has a new baby, reminded me of this. Even healthy people are exhausted and overwhelmed when they are woken up throughout the night, night after night, so I’m cutting myself some slack. Having said that, after having quite bad diarrhea from the Valerian supplement I started last week (my body is SO tolerant), I was finally ready to consider a prescription sleep drug. Especially after reading this post over on Learning to Live with CFS.

Dr. M, my new sleep doc, gave me a few new options for sleep and then pointed out, “Note that I am not reaching for my prescription pad. We can go there, but not yet.” Low dose anti-depressants may be the answer, but I love doctors that try everything else first. It makes me feel listened to ~ respected. First he said, for very light sleepers, CPAPs can replace the waking problem of apnea with the waking problem of a foreign object attached to your face. Well, no shit! Finally someone who doesn’t say, you just have to work at getting used to the mask and it may take months.


Just get used to it!

He told me to add another mg of melatonin about 3 hours before bed and keep taking the 1mg right before I go to sleep. He recommended getting a custom-made pair of earplugs from a hearing aid store. They will cost about $100, but he said they will be a very good ~ and comfortable ~ investment. I should try going to bed a little later ~ he thought that I may wake up 5 times rather than 15 times if I went to bed closer to what I thought my natural sleep time would be (I told him, in a perfect world, I think my sleep schedule would probably be around 12am-8am). He warned that it sounded crazy, but putting a gel ice pack under my neck and head when going to sleep can help and, even better, take a bath 3 hours before bed and then do the “cool head” routine to really exaggerate the effect. He recommended I read Too Loud, Too Bright, Too Fast, Too Tight, more than anything to get some solace in the fact that I’m not alone. Finally, he thought we should try a dental appliance to replace the cpap since my apnea is mild (although, he did confirm that I have a physical apnea problem ~ not just heightened brain activity. He thought the throat narrowing is probably a congenital disorder that has affected my sleep all my life). This is not my dentist, but the page gives example images of dental appliances, if you’re interested.

Aside to my Dad: I KNOW, you told me so. But I wanted to give the cpap a fighting chance. Plus, I really liked breathing filtered air all night instead of dust mites and dog dander. Plus, I invested a lot of time and money getting to know the cpap life. Dr. M. warned that it won’t be a quick and easy transition to a dental appliance. The dental device takes time to make and, once I’m using it, it will take a few visits and a lot of tinkering to get it fit perfectly. He said it will shift my teeth a minuscule amount and cause some jaw discomfort, but it can ultimately help TMJ disorders, as well as apnea.

More later when I’m up to it. The snow from my last post is gone already ~ just in the time it took to edit this, maybe half an hour. So, new gratitude:

TO THOSE FRIENDS THAT HAVE NOT LET MY ABSENCE FROM LIFE SCARE THEM AWAY: THANK YOU FOR BEING THERE. There are no words to describe how much I have needed you and how you have buoyed each day and given me the strength to keep fighting this. Isolation is a killer and feeling like you’re not interesting/funny/able to contribute/able to participate can start to make you feel a bit worthless. If I’m not brimming with energy, quick-witted and able to talk about life’s new adventures, would I want to know me? So, you know who you are: I don’t take you for granted for even a single second. [Again, this subject needs a separate post all to itself.]


… love … love … love … love …