Week in Review (3/8)

aerial photography of seashore

Photo by Daria Shevtsova on Pexels.com

My goodness- it’s been a while! Here’s a rough update on what’s happened, health and otherwise:

What I read (memorable things, at least):

  1. Booker T. Washington- Up from Slavery
    1. About halfway through this!
  2. Atlantic interview with Tara Westover 
  3. Leadership in Turbulent Times by Doris Kearns Goodwin
    1. I’m only a few pages in but I really love it. It’s also the third time I’ve tried to read this. Wish me luck.
  4. MR article on creating a Culture Calendar
    1. Great to have things to look forward to, and makes it easier to channel my energy into the really important activities
  5. What Would Hannah Horvath Make of Elizabeth Wurtzel?
    1. This article from the New Yorker has been an open tab in chrome for the past few weeks and I finally got around to reading it.

What I listened to:

  1. Tyler Cowen interviewed by Tim Ferriss
    1. Tyler is brilliant and thought-provoking. I can’t get over how succinctly he speaks and manages to condense offbeat, complex ideas into a few sentences.
  2. Bach- The Art of Fugue
    1. Prompted by Tyler Cowen.
  3. Rich Roll interview on the GoopFellas podcast
    1. I kind of stumbled into this, but wound up really enjoying it (I love learning about endurance athletes). Seamus Mullen, one of the podcast hosts, has the most delightful voice.

What I watched:

  1. Finished VEEP- anything else?
  2. Two episodes of Big Little Lies, Season 2

What I cooked/ate:

  1. Odd Duck dinner with Mom and a friend!
  2. Pesto (dairy-free)
    1. Walnuts, basil, lemon, garlic, a bit of kale, and tons of olive oil
  3. Paleo pancakes with strawberries (simple mills mix)
  4. Açai bowl
  5. Morning Glory muffins
    1. Simple Mills Vanilla cupcake mix, to which I added: walnuts, raisins, pineapple, apple, shredded coconut, orange zest, baking soda, and apple cider vinegar. DELICIOUS.

Medical stuff I did/tried:

  1. Cupping (on my own!)
    1. Helps with lymph
    2. Feels great
    3. Reduces back pain
  2. Acupuncture
  3. NAD IV (250mg NAD, also added Mg, Amino acids, and B vitamins)
    1. Yikes. This was the last of 4 NAD IVs, and it had been a few weeks since my last one. NAD IVs are not a pleasant experience, and it takes forever to administer. I do a super slow drip to minimize the effects (it’s like massive pressure on your chest plus headache and it generally sucks but usually stops once you’re done). I had a massive headache when I got home (delayed reaction, so could be due to something else, but apparently headaches aren’t uncommon). 
  4. Neurofeedback
  5. Detox foot bath
  6. Azithromycin for mycoplasma infection (super fun!!)
  7. Trying to take more of my supplements and meds in the AM rather than at night/with dinner, to help digestion and sleep quality
  8. Lion’s mane liquid in AM to help with brain function and sleep
    1. No negative side effects
    2. Might have slightly improved my brain function
    3. Definitely having some crazy dreams!

Exercise/Activity:

  1. Focused on walking!
  2. No major strength training or exercise classes

What I’m thinking about:

  1. How to balance family and friends with my health
  2. How much more to experiment and try, and where to cut back
  3. How to take fewer supplements
  4. How do I get back into the subjects I loved in college, like ancient greek history and political theory?

Closing quote:

“I saw then, as I have so many times since, that stories don’t end just because you tell them. They may become funnier or more colorful or more meaningful because you’ve told them. They may make it easier to wake up every morning and keep living that story. But they don’t change it or make it a happy one. Change, unfortunately, can only be accomplished off the page. Change means enduring some measure of sameness while you build a foundation from which you can launch yourself into your next adventure. A pure heart beats as steadily and as monotonously as a sell-out one.” -Meghan Daum, who’s actually made the whole writing professionally thing work.

Recent Chronic Fatigue Syndrome Treatments

In an attempt to reign in my experimentation, write more, and have a general idea of what my broader health strategy is, I’m going to aim to write about anything new I try, be it supplements, treatments, gadgets, etc. Part of managing a chronic illness is figuring out what works and what doesn’t, and doing more tracking of ME/CFS treatments will hopefully help my legions of chronic illness followers. Even if it’s just a tweet, I want to make a point of taking the time to document what I’m doing for my health. All part of my plan to become an unstoppable health influencer wellness goddess!

I am lucky to have the opportunity to try all kinds of crazy things to help alleviate my ME/CFS symptoms (primarily fatigue, but also endocrine/thyroid issues). Here are some of the latest treatments for Chronic Fatigue Syndrome (ME/CFS) that I’ve tried:

Gadgets:

  1. ChiliPad
    1. I have a much longer post coming that will describe this in more detail. If you haven’t heard of it (I learned about this from the biohacking community), it’s an ultra-thin mattress pad lined with tiny silicone tubing through which water circulates. The mattress pad is attached via a large tube to a box, which circulates the water and keeps it at a specific temperature, which you can control on the box itself or with your remote. It’s supposedly low-EMF, which is how this electronic device earned a spot in my otherwise electronic-free bedroom/cave (save for my window AC). The device does make noise, but it’s a gentle white noise, like if you had a fan running on low. I love it so far- temperature has a huge impact on sleep quality, and I have less need for my noisy AC unit and fans now. The price is steep (unless ChiliPad wants to sponsor me!) so I was grateful to have a 25% off coupon. My utilities bill for the last month, despite being in the middle of summer, was significantly lower than usual, so it may end up paying for itself. I’m a fan!
  2. NanoVi
    1. I don’t have a ton of evidence on this device, so the jury is still out for me. Here’s an article looking at the benefits of it, and examining the effects on oxidative stress. I may start using it again, but I need to review the benefits relative to the cost (I don’t own this device, but I have access to it at a local wellness center).
  3. Natural Cycles
    1. This is a fertility app that comes with a thermometer (measures to two decimal places). I am not using it for planning pregnancy, but rather to get a better idea of my hormonal function so I can fine tune my progesterone dosage (which I take to even out my cycles and lessen PMS symptoms). Temperature can also be a reflection of thyroid function!

Therapies:

  1. Acupuncture
    1. I recently started doing acupuncture again. I first tried it way back in 2008/2009 when I first got diagnosed (when my internist diagnosed me with CFS, her recommendations for treatment were massages and acupuncture). It’s been a few years since I last had an acupuncture session, and I decided to try it to see if it would help with hormone balancing, sleep issues, and general energy levels. I found an acupuncturist who has a doctorate in acupuncture and Chinese medicine and seems incredibly knowledgeable. I’m so excited to work with her!
  2. Gua Sha
    1. I’ve done a number of different muscle-release techniques (foam rolling, cupping, massage, etc) and it’s helped dramatically with my fibromyalgia- I rarely have flares now. Apparently it can help with thyroid function, so I had my acupuncturist work on the back of my neck yesterday. If nothing else, it feels amazing (I have a pretty high pain tolerance- gua sha is not for everyone!)

Supplements/diet:

  1. Inosine
    1. Suzan Jackson is to thank for this– I tried Inosine years ago during my misguided attempt at becoming a competitive cyclist (this may shock you, but CFS and endurance sports don’t mix well!), and then forgot about it after I finished the bottle. I hadn’t read up on its anti-viral and immune modulating effects until recently, during one of my blogging deep dives/procrastination session. I’m following Sue’s recommendations for dosing.
  2. Seed Cycling
    1. This involves eating different seeds at each phase of your cycle. During the first half (follicular phase), you eat flax seeds and pumpkin seeds. During the second half (luteal phase), you eat sesame seeds and sunflower seeds. Seems pretty straightforward and reasonably cheap. I just started trying this- I’ll report back. This article is a great starting point.
  3. Xiao Chai Hu Tang
    1. This is a blend of Chinese herbs that my acupuncturist gave me to try. It’s designed to help with immune support, and includes Ginseng and Licorice root, among other things. I haven’t noticed any adverse effects yet, and if anything I feel slightly more energized, though I’ve only been on this for a few days.

Books:

  1. Beyond the Pill by Jolene Brighten
    1. This book’s aim is to help women understand the effects of hormonal contraception, but I found it helpful as an overview on hormones and understanding what your symptoms correspond to. Regardless of what you use and why, this book gives some recommendations on how to support your body. I appreciate that Brighten is not judgemental and understands that this is a personal decision for women, and not everyone will react the same to different hormonal interventions.
  2. Hashimoto’s Protocol by Izabella Wentz
    1. Continuing the endocrine system kick, I picked up this book after listening to a podcast with Izabella. I have hypothyroidism in my family, and potential autoimmune dysfunction (I have previously shown some levels of thyroid antibodies but not massive). I’m on LDN now, and so I’m not sure how that will affect my next thyroid panel. But, my acupuncturist and others say I show signs of Hashimoto’s, so I avoid gluten and other potentially triggering foods. This book gives a good explanation on Hashimoto’s, why it might occur, and how to manage symptoms.

Allergy Season, or how I learned to stop sniffling and love spring.

 

IMG-5652It’s much easier to enjoy this when your allergies aren’t driving you completely insane.

It’s allergy season, which means lots of beautiful blooming trees and flowers but also runny noses, itchy eyes, and sore throats.

I had issues with allergies off an on growing up, and then everything escalated around the time I started developing chronic fatigue syndrome (CFS). All of a sudden I had sinus infections every few weeks (meaning tons of antibiotics, fun times!!) and was on a constant rotation of allergy medicine, prescription nasal sprays, decongestants, and allergy shots from my doctor’s office. It took a few years, but finally I’m doing well on supplements, and free from the hassle of weekly allergy shots. I rarely get sore throats, and my sinus infections are almost nonexistent. These are my supplement recommendations; if you have access to a good allergist, you may find allergy shots useful.

Here’s what I have found most helpful, so far:

  1. Nasal spray. Saline sprays like this are great, but I use Xclear spray which has xylitol. If you already have a nasal spray bottle, you can buy xclear powder and mix with purified water, rather than buying new bottles constantly. I use the nasal spray at least twice a day, and more if my allergies are acting up.
  2. Quercetin: I take this supplement, which pairs Quercetin with bromelain for better absorption. I have not had any adverse or herx reactions to taking this supplement-yay! Some research suggesting quercetin might help with exercise tolerance, at least in mice (link).
  3. Allegra: I take this over-the-counter allergy medicine as needed. I have mainly environmental allergies, so if the pollen counts are high, or I know I’ll be around dogs or cats, I’ll take one of these in the morning.
  4. D-Hist: I rotate this with rootology every two weeks or so, depending on my symptoms. It has quercetin, nettle, Vit. C, bromelain, and NAC. Obviously one could take these ingredients separately too!
  5. Rootology: this blend of herbs is a great allergy supplement. I rotate this with D-Hist. I take it in the morning, since it contains licorice, which can keep me up at night.
  6. Nettle tea: I just bought this giant bag of nettle leaves to make nettle tea and infusions. Buying bulk herbs and making tea is WAY cheaper than buying supplements. I’ve only been drinking it for a few days, but so far no problems. I add a cup or so of leaves to 1 qt of boiling water and let it sit overnight. In the morning, I drink it with a squeeze of lemon and a drop of stevia. Surprisingly delicious, especially since it looks like swamp water.

Reflections on 10+ years

10ish years on, and I’ve not written much about my experience with this ridiculous illness. Perhaps because I never thought I’d have to write this essay in the first place. I’ve written papers about economic policy and higher education but for some reason I rarely take the time to write about my experience. I look back at journals from the past few years and I frequently see things like, “I need to write more!!” When I’m exhausted, all I can think about is resting, and when I’m feeling well, I just want to get outside and see my friends, which leaves little time for reflection. And like many with this illness, I have ridiculous expectations of myself, and I often think: if I’m going to take the time to really write this thing, it better be a really brilliant New York Times-worthy piece of writing.

My diagnosis was one of exclusion: I started feeling sick during a backpacking trip in Colorado, and after months of doctor’s appointments and countless lab tests, I was finally diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. Which at the time basically meant, yes you’re very tired and have all these symptoms but we can’t find anything else wrong with you, so we’ll slap on this CFS/FM label. Best of luck, you can try acupuncture and some magnesium. Also, you’re a senior in high school right now, but you should probably drop all your difficult classes and think about delaying college. Hearing all this as an overachieving self-absorbed 17 year old was about what you’d expect: I thought my life was ruined, and I couldn’t believe that after all I’d experienced in the past few months, I would be stuck with an incurable, ill-researched illness with a silly, benign-sounding name. Saying I had Chronic Fatigue Syndrome did not inspire fear in others; rather, I was more likely to be met with puzzled looks and replies like, “wow, I’m also tired! I think I might have that too!”, which I never interpreted as malicious, but you’d never say that to someone with cancer.

I somehow managed to simultaneously overestimate and underestimate the toll this disease would take on my life: what can I say, I contain multitudes. My doctor told me the severe fatigue and muscle pain I’d experienced would likely continue, but I might expect some improvement and, best case scenario, could hope to return to roughly 80% of my activity level in two years. At the time, that sounded totally devastating (after almost 11 years of this illness, I think that sounds fabulous. If only!). The thoughts of not graduating from high school on time and not going to my dream school were horrifying; I wondered if I’d be miserable forever. How could I possibly be happy if I was sick and exhausted all the time? And at the same time, I thought, I’m strong and intelligent- there’s no way this stupid illness will take me down. Two years? I’ll get over this in six months. With a name like “chronic fatigue syndrome”, it can’t be that bad.

Looking back, I was obviously wrong on many accounts. This experience has been both worse and better than I expected. I’m not miserable or constantly unhappy. However, fatigue has pervaded my life in ways I never imagined, and I’ve gone from thinking this would be a temporary blip on my life’s radar to realizing this is a chronic and perhaps lifelong situation to deal with. I saw the other day on twitter that people were giving advice to themselves ten years ago, and I wondered what I’d say. First, I want to tell myself not to get caught up with short term gains that might result in long term health consequences: specifically, don’t take that internship in New York; you’ll end up overworking yourself and relapsing badly. Don’t go study abroad in England; you’ll get exposed to mold and it’s not worth the line on your resume. Things are going to work out, just not in the way you expected. Your life isn’t going to look anything like you imagined it would, and that’s perfectly fine. You will get better, if for no other reason than your ability to handle this illness will improve over time. Be kind to yourself, dammit!

In the past few months I’ve been more actively engaged in a wonderful community of people with similar health experiences. I’ve opened up to people in my life about my health journey, and in turn I’ve been able to help friends with their own struggles. I’ve found hope and joy in scrolling through Twitter (of all places!! Who knew??) as people share what they are thankful for on a daily basis.

My experience with this disease has been one of constantly managing expectations. I’ve improved significantly over the years, thanks to trial and error and constantly experimenting with alternative treatments (I’m incredibly lucky to have access to a clinic that treats people with complex diagnoses). But I’m not where I want to be, and as I attempt to figure out my path in life, I’m constantly scaling back and redirecting my ambitions. It’s been a struggle coming to terms with these realities: acceptance has never been easy for me. I didn’t choose this path, but I can capitalize on my experiences, and do more to help others in similar situations. Happy ME/CFS day! I’m going to celebrate with a walk and nap. Cheers!

2019 Q1 Review

I am, on the whole, doing much better than I was at the start of 2019.

Mental:

I feel less anxious overall. My mood is generally more consistent, and I’m dealing with disappointment better than I have in the past. I still get frustrated when my symptoms flare and I try and pinpoint a cause for why I’m more tired than usual, which results in me blaming myself. This is especially a problem since chronic illness is a constant struggle of doing my best given incomplete information, and I don’t want to draw conclusions from biased observations. I am doing a better job of not letting my symptoms constantly dictate all my decisions.

Physical:

Stronger generally but still dealing with low back pain. Stamina is improving, and I was able to ski in February without disastrous consequences. My fatigue levels still fluctuate, and I go through weeks of doing well followed by weeks of increased fatigue. These cycles continue to frustrate me. Thyroid function continues to improve, and I’ve been stricter with my diet without feeling like I’m depriving myself.

Career:

I’m working more hours per week, but still feeling lost. Interview with law firm was difficult as it made me realize how little work experience I have, and how much that will affect my future job prospects. I want to feel more confident that I’m making progress and gaining more experience. I still feel like I’m not doing as much as I could and I struggle with comparing myself with others, whether it’s my healthy peers or my chronic illness comrades who have managed to blog regularly and stay consistent with their writing. I had an interview recently for a job, and it made me realize how my lack of work experience is interpreted in certain industries. I’m enough removed from college that my GPA and transcripts carry little weight in comparison to actual work experience. I have to find a field where my experiences, health and otherwise, are an asset and not a hindrance.

Relationships:

I have made an effort to consistently see friends and have good conversations with the people I care about. I still want to expand my social circle, especially after years of isolation. I’m also aware of the ways working from home and dealing with fatigue isolates me from a lot of my peers, and I don’t always have the energy to counteract that. But after a decade of being on my own all the time, it’s getting old and I want to be around people more. I would like to integrate that into my work life as well. Dating continues to be an adventure, with decidedly mixed results. But I have made efforts to meet people and go on dates, even if it gets frustrating at times.

 

Recent Reading

I read two books recently that really helped my perspective on chronic illness. The first was The Wellness Project by Phoebe Lapine which I absolutely loved. Phoebe is hilarious and informative as she describes her year-long journey to take her health seriously and address chronic health issues like Hashimoto’s, all without going completely insane while living in NYC. She models her project after Gretchin Rubin’s Happiness Project, with each month dedicated to a different facet of wellness. I love her lighthearted approach to health, and while she doesn’t have the same issues I do, I really admire her mindset: after years of ignoring and resisting her symptoms, she embraces the challenge and turns these issues into projects with concrete plans. I’m trying to do something similar with my own health: rather than just get frustrated by my insomnia, I try and do some problem-solving and tackle the situation head-on. It’s not always easy, but I enjoy a challenge 🙂

I’ll review the next book tomorrow!

March 2019 Update

Progress has been made! After a rough summer and some setbacks this winter, I somehow made it to Utah and got to ski for a few days with friends. I got diagnosed with CFS/FM in high school, and went over a decade without skiing or really doing much of the adventurous stuff I loved as a kid. It was a physically taxing experience but good encouragement. Now I want to do a better job of documenting what has helped me most, and how I plan to sustain these improvements in the coming weeks. Stay tuned.

Supplements to increase energy in CFS/ME, part 1

Apologies for the delay in posting. It’s been a weird couple of weeks, and my brain isn’t quite firing today. Case in point: I just looked up recipes for dishes involving hatch chiles, and came across a crockpot chile taco concoction that I read as “crackpot chile taco”, and frankly I’m a little disappointed now.

Over the years I have tried countless supplements with the intention of chasing that elusive source of energy. Struggling with chronic fatigue syndrome for ten years means that I have amassed quite the collection of pills, potions, and various snake-oil like products all in this (seemingly) futile quest. Here’s what I’ve tried lately, and why:

  1. Elevate by Osmosis (Amazon link) I started taking this a few years ago, stopped for reasons I don’t remember, and recently resumed a few weeks ago. The bottle makes some frankly ridiculous claims (this may increase sexiness?!?) but the ingredients are solid, and taking this helped me get through an especially physically demanding weekend. A few caveats: this contains a decent amount of niacin, so start with one capsule and gradually build up. Only take this if you are well-hydrated and have a full stomach, otherwise you’ll get a pretty wicked niacin flush.Elevate Ingredients              This contains a good blend of energy-supporting ingredients, like b vitamins, potassium, magnesium, CoQ10, Alpha Lipoic Acid, Reishi mushroom, and sea salt. Expensive, but worth trying.
  2. D-Ribose (bulk powder, capsules) I learned about D-Ribose first from reading Dr. Teitelbaum’s book way back in 2008 when I had first started getting sick. And by reading his book, I mean my mom was reading it and ordering supplements for me because I barely had the energy to hold a conversation, let alone research treatment protocols. This post gives a more detailed overview of the mechanism of action of d-ribose. Suffice to say, ribose is a pretty benign, with no side effects that I have noticed. It tastes like sugar, and I either take 1-2 capsules per day, or stir in 1/4-1/2 tsp into my tea in the morning. Dr. Teitelbaum has his patients take way more, so experiment as needed. (Additional reading on D-ribose here).
  3. CoQ10 (softgels) I take between 100-200mg of CoQ10. I was off of this supplement for a long time, and then just recently started again after struggling with increased fatigue this summer. The research on CoQ10 is extensive, and though slightly expensive, has had no negative side effects for me.

Stay tuned for the next addition of supplements that specifically aim to increase energy levels for people with CFS/ME.

 

Low Dose Naltrexone

I’ve been on Low Dose Naltrexone (LDN) since mid-March 2018. I’m still taking 1.5mg, and have had no adverse side effects. What has changed is that I need way less thyroid medication now. As I have used various supplements to address my chronic infections, I have needed less and less thyroid medication, and I’ve worked with my endocrinologist to find an ideal dose. I usually notice an increase in anxiety when my thyroid medication is too high, and that has certainly been the case over the past few weeks. LDN is being used to treat a variety of thyroid disorders (especially Hashimoto’s), and I assume LDN is part of the reason why my thyroid function has improved. This is, overall, great news, but the few weeks of heightened stress and anxiety weren’t exactly super fun. Ah, hindsight.

Bottom line, I would recommend a trial of LDN for people with CFS/FM/ME/lyme, etc. I have had no herxing, no bad side effects, no sleep disturbances, nothing. It’s probably one of the most benign interventions I’ve ever tried.

IMNV-II for Chronic Fatigue Syndrome

I thought I would add an update on some supplements that I’ve added to my routine recently. One of these is a liquid herbal product by Beyond Balance called IMNV-II. Beyond Balance has a wide range of similar products, but my practitioner specifically recommended this to help target my chronic infections, specifically Epstein-Barr Virus. Epstein-Barr Virus (EBV) is common amongst those of us with CFS/ME, among other conditions. There is some speculation that hypothyroidism is related to EBV; anecdotally, I’ve been able to decrease my thyroid medication dramatically since starting supplements to fight EBV (first Cat’s Claw, now IMNV-II).

I started with only one drop, in water, at bedtime. I tend to herx from strong herbal products, so starting slowly is necessary for me. The best part of this product is that as a liquid, it means I have fewer capsules to take. And since I already take a ton of supplements, fewer capsules to swallow is always welcome.

IMNV-II is composed of a variety of herbs:

Pau d’Arco (Bark) (Tabebuia impetiginosa)
Elderberry (Fruit) (Sambucus nigra)
Rosehips (Fruit) (Rosa canina)
Oregon Grape (Root) (Mahonia aquifolium)
Coptis (Root) (Coptis chinensis)
Neem (Leaf) (Azadirachta indica)
Fresh Skullcap (Herb) (Scutellaria lateriflora)
Cordyceps (Fruiting Body) (Cordyceps sinensis)
Wild Cherry (Bark) (Prunus serotina)
Ginger (Root) (Zingiber officinale)
Gotu Kola (Herb) (Centella asiatica)
Cramp Bark (Bark) (Viburnum opulus)

Some of these (like Neem) I had already taken. But many of these were unfamiliar to me. I have not had significant herx reactions to taking this, and I have been on a dose of 5 drops in water for a few weeks now. I will be curious how this affects my overall health, as I have seen my stamina increase steadily over the past few months. This is my primary immune function supplement, and I have been pleased with the results so far.