Tag Archives: Coq10

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The Reaction Chronicles

I’ve been adding a supplement or trying a drug or testing a food every few days for a while, holding off before and during my period and if I am reactionary. I have recently had some of the most violent side effects to some of the most innocuous substances and I still find it incomprehensible. In my old life — that old Elizabeth who started 10 supplements at full dose on the same day — I never would have believed that such a small amount of something “harmless” could cause such an extreme reaction. Most notably, ElectroMix electrolytes paradoxically causing extreme blood pressure crashes, D-ribose causing extreme blood sugar crashes and Dr. Yasko’s All In One vitamin causing such terrible bone and muscle pain and cramping from the waste down that I didn’t sleep for three days and was considering going to the hospital and begging for an epidural.

I wanted to chronicle these trials so I remember. Here are my notes from the last four months. No note means no discernible reaction.

  • 4/26/14: Started CoQ10 100mg
  • 4/23/14: Started Thorn Bio-gest
  • 4/20/14: Started Now Foods Yucca
  • 4/15/14: Started Prednisone (bad sleep, swollen hands and feet, grumpy, facial hair, very bad tachycarrdia)
  • 4/13/14: Started Thorne Riboflavin 5 phosphate
  • 4/12/14: Started 2 Fish oil capsules
  • 4/10/14: Started Calm magnesium + calcium
  • 4/3/14: Changed Zyrtec brand
  • 4/1/14: Started Dr. Yasko’s All In One vitamin (unimaginable pain from waste down in bones and muscles; spine muscles jumping; worst reaction ever)
  • 3/26/14: Started D-ribose (terrible BS crashes)
  • 3/25/14: Started Desonide cream and tried Valium (horrific headache, stuffy nose, SOB)
  • 3/24/14: Started Dr. Yasko’s digestive enzymes
  • 3/22/14: Tried Baclofen (bit of a headache)
  • 3/21/14: Started Molybdenum and Vivite face wash
  • 3/19/14: Started Finacea, Cereve face wash and clindamycin lotion.
  • 3/11/14: Tried Electromix (terrible BP crashes)
  • 3/8/14: Tried L-glutamine (sickest day in months)
  • 3/6/14: Started Jarrow Formulas Acetyl-l-carnitine
  • 3/5/14: Started Zyrtec
  • 2/27/14: Tried egg (very bad next day)
  • 2/26/14: Tried fish
  • 2/24/14: Tried avocado
  • 2/21/14: Started Zantac (terrible stomach pain and nausea)
  • 2/15/14: Tried gelatin again (helped sleep)
  • 2/14/14: Tried Valium (headache, stuffy nose)
  • 2/12/14: Tried Cannabis pill again
  • 2/5/14: Tried Thorn Medibulk
  • 2/4/14: Tried Benadryl for sleep and gelatin (hungover next day)
  • 2/2/14: Tried Tizanidine
  • 2/1/14: Tried egg, avocado and cannabis oil (very bad next day)
  • 1/26/14: Tried egg (itchy throat spot, very bad next day)
  • 1/20/14: Tried citrus
  • 1/5/14: Tried soy (bad headache)
  • 1/31/13: Tried Ativan (dopey, headache, bad the next day)
  • 12/24/13: Tried Trazodone again
  • 12/19/13: Tried Trazodone again
  • 12/16/13: Tried Trazodone
  • 12/12/13: Started PS
  • 12/6/13: Tried corn (next day bad bowel and headache)
  • 12/3/13: Started probiotics

Other reactions of notable mention:

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…and I will hug him and pet him and squeeze him…

I don’t think I have the energy to write much because I have big plans today like making a few phone calls and washing my cpap. I’m also determined to do my stretches today, which I haven’t been able to do for ages. I had 19 very bad days. The worst day of all was two days ago. My brother, a pilot, was in town overnight and I wasn’t able to see him. I haven’t seen him since August, 2011 ~ two months before I got sick. I kept thinking, I manage to get to a doctor appointment and talk for 45 minutes, but I’m not able to meet my brother for breakfast? But he has another layover here in two weeks, so I get a second chance.

Then, right after that horrible day, miraculously, yesterday I felt better. Not great, but better. I wish I could adequately describe the difference between a bad-but-not-horrible day and a good-but-not-great day. They are worlds apart. Instead of getting out of a chair like a crippled, arthritic 90 year old, I get up like a typical 39 year old who is in pain. Instead of walking up the stairs to the bathroom delicately, with difficulty, concentrating on each baby step and clutching at the walls, I walk up slowly, heavily, but without much thought. Instead of watching tv as still as a statue, unable to smile, needing to block my ears at loud noises, but having a hard time holding my hands up to my head, I can laugh and operate the remote control. Instead of unhappily eating an apple or drinking an Ensure to pad my stomach for the pills I have to take, I am hungry and look forward to eating a (really boring) meal.

I looked in the mirror yesterday and there was pink in my cheeks, but not in a feverish way. I had been ashen for weeks ~ grey skin, dull yellow eyes ~ and overnight it looked like I had taken a walk outside. It feels like the Monster, who has been crushing you in both hands for weeks on end, had to scratch his nose or something and, with one of his hands not pressing in on you, you are suddenly able to take a breath… to have a conversation without sweating and shaking… you are able to pet your dogs and hug your husband and make granola. And the whole time you are thinking, thank you thank you thank you. That is when I can see a tiny seed of hope. I have to remember in the despairing, dark days of pain, that there will be another day in the future when the Monster has to let go to answer the phone or smoke a cigarette or whatever… and you will be able to move a little easier.

monster

I saw the Good Doctor on Monday and she is adamant that I stay away from dairy, gluten and grains still. I am also back on all the same supplements as before, plus berberine to combat yeast and magnesium to help pain and sleep (note to those that may not know: magnesium glycinate is the form that should not mess with your bowels. Other forms can help you poop or cause diarrhea, depending on how much you take). I’m thrilled. After months of stagnation, I have forward momentum. I told her, “I don’t care what we do, but I have to do something. If you don’t want me back on the supplements yet, I’m going to start the Chinese herbs.” After much research online into ME/CFS experts’ protocols, I was bolstered to see many of the same supplements that the Good Doc has me on (CoQ10, fish oil, acetyl-L-carntine etc.). I started them again on Monday and I wonder if they contributed to the uptick on Thursday. Placebo effect doesn’t really work with this disease in me, as much as I wish it would. It might make me feel a little lighter or more hopeful, but the placebo effect cannot cause the difference between practically bedbound and able to walk and talk. It’s more likely the fact that I slept fairly well Wednesday night ~ 8.5 hours. My plan is to start Cymbalta on Monday or whenever the initial nausea from the supplements wears off… so I can deal with the initial nausea of the Cymbalta. Joy.

Here’s my daily regimen:

 daily pills