Research Group for ME/CFS, Chronic Disease, Ageing and Cancer

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Re: Calluna's journey
« Reply #15 on: June 30, 2021, 06:43:53 PM »
Day 8

Not nearly so much fun today :) Physical energy was okay, but I was pretty wiped out mentally, so I didn't do a whole lot. Still carrying on 👍
same here, let the fun part begin xD



  • Calluna
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    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #16 on: July 01, 2021, 06:28:48 PM »
Day 9

Energy was back up a bit today, which was nice. Didn't do nearly as much as I did on Tuesday :) Bumped up EGCG to 1.5 capsules and adusted liposomal glutathione to 2 capsules after realizing I'd derped on that dose too. I figure if I don't start seeing immune symptoms by Sunday I'll increase beta-glucans too.


  • Calluna
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    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #17 on: July 02, 2021, 06:53:24 PM »
Day 10

Energy was still pretty good today. Was able to do some light housework as well as hobby work, which was nice. Mood was pretty good but has dropped significantly in the past couple of hours; this is probably more situational than protocol-related, and will likely be better in the morning. Still looking at upping the beta-glucans on Sunday.


  • Calluna
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Re: Calluna's journey
« Reply #18 on: July 03, 2021, 08:42:06 PM »
Day 11

Not an especially nice day today, and not in a good immune-reaction type of way. I think several things came together to derail my day:
  • eating too much chicory root fiber the night before, which caused some mild intestinal discomfort and woke me up after <7 hours of sleep (I do better with 9-10)
  • difficulty taking all of my morning pills due to said intestinal discomfort; I get issues taking very much on an empty stomach anyway, so I've been trying to figure out how to organize my morning so I don't get ill before breakfast, and I just plain didn't have a good start to the morning
  • continuation of the depression from last night (I'll just go ahead and blame that on the chicory root too because why not)
  • general low energy, probable PEM component; "napped" for 5 hours as a result, after trying and failing to resolve the depressive component

Things I did differently today as a result:
  • I've eaten relatively little today. I had a big bowl of oatmeal with honey and cinnamon not long after breakfast, which usually helps if my GI system's gone awry; everything besides that was fairly low carb. Had a few bites of candied (uncrystallized) ginger to settle my stomach just now after taking my evening prescriptions and thinking hard about all my stomach upset today in order to write this post...
  • I took all of my morning pills, but noon/afternoon/evening I took only reishi, beta-glucans, and EGCG to avoid the So Many Pills stomach upset
  • As previously mentioned, slept for 5 hours in the afternoon. I do feel like that helped.

With all that in mind, I think I'll focus on making sure I can get and keep everything down tomorrow, and not mess with beta-glucans quite yet. I will go up to 2 full EGCG capsules considering I felt a little PEMmy with everything else going on; part of my difficulty in not sleeping in this morning was a light bout of nonspecific tension and anxiety which can crop up with overdoing it.

Also, maybe the cats will be more inclined to sleep in one place tonight instead of climbing all over us all night...

Happy Independence Day to US folks! May your celebrations be pleasant without exhaustion, and may your hearing protection be effective.


  • Calluna
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    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #19 on: July 04, 2021, 06:20:52 PM »
Day 12

Mostly back on track today. Slept better, got all my pills down, ate somewhat better, had some energy. I'm gonna give it another day before I poke at the beta-glucans, just to be safe, as my stomach is still a bit unhappy.


  • Calluna
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    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #20 on: July 05, 2021, 08:33:58 PM »
Day 13

If there's PEM around to be had, and the EGCG hasn't scared it off, I'm sure to find it tomorrow or Wednesday; I've done quite a lot today. Not any kind of intense cardio or anything, but certainly more sustained physical activity than usual. (But hey, the cat tree is repaired and the dining table is almost clean!) Stomach is pretty much better, though I'm about at the maximum amount of fish my appetite can stand for another week or two. Tomorrow, bumping up the NOW beta-glucans from 6 to 9 caps over the course of the day.


  • Calluna
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    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #21 on: July 06, 2021, 06:54:53 PM »
Day 14

Somewhat less energy today, but not terrible. Worst thing was a bit of depression which came and went in the course of the day, and is pretty much gone now. Beta-glucans went up with the NOW supplement at 9 caps over the day, and lion's mane at ~4g raw powder per day up from 3g; not strictly measured, but I have capsules coming so whenever they show up it'll be a bit more precise. Still watching for immune reaction, and need to figure out how far I should adjust reishi/lion's mane/NOW beta-glucans before investigating confounding factors.

Tomorrow should be telling as to whether PEM's gonna get me from yesterday's activity. As I mentioned, my energy and activity were lower today, but never to where I thought about going back to bed. I made it through today's to-do list, despite some frustrating factors, so all in all I think today was still a win.


  • Calluna
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    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #22 on: July 07, 2021, 08:38:32 PM »
Day 15

After getting through today, I think PEM is reduced but not gone entirely. I wasn't laid up in bed today like I'd have expected, but my energy levels were on the low side, maybe a bit more than yesterday.


  • Calluna
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    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #23 on: July 08, 2021, 07:42:28 PM »
Day 16

Found the PEM 🙁 Today was pretty crappy; I threw up my empty-stomach pills this morning, slept an extra 5 hours after that, and the rest of the day's been a daze. I'm a bit discouraged right now, but also experiencing some noticeable mood symptoms, so that's certainly not helping anything. Hopefully I'll be mentally clearer tomorrow, and able to formulate questions tomorrow about how best to proceed; something something should I continue to bump up x, y, or z; something something am I letting something important slide by accident; something something should I go try enterovirus testing again, etc.

It's been a consistent worry in the back of my mind that the present improvements have been mostly or entirely placebo, and more a result of "I think I can do more" than "I think I need to do even less". This episode indicates to me that either that is true, or some alteration in my execution of the protocol has messed up something fundamental, or both. (Third option, it's been primarily placebo because of unknown enterovirus co-infection?)


  • Calluna
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    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #24 on: July 09, 2021, 07:39:53 PM »
Day 17

Bit closer to baseline today. Given the sheer quantity of variables, I'm going to try to nail down the biggest variables and look into coxsackie B/echovirus testing again. I tried earlier this year, but getting it to ARUP failed that time (thanks Quest). Going to call around to local independent labs and ask whether any of them have ARUP accounts. Also looking to get my other EBV labs done, for the sake of completeness, and I should be able to throw in CMV as well.

Will pick that up next week, I think. This weekend I'm probably going to 1. get some mental rest from chasing research and 2. spend half of Sunday asleep after my first dinner out with friends in... I don't know how long.


Re: Calluna's journey
« Reply #25 on: July 09, 2021, 11:20:13 PM »
Day 16

Found the PEM 🙁 Today was pretty crappy; I threw up my empty-stomach pills this morning, slept an extra 5 hours after that, and the rest of the day's been a daze. I'm a bit discouraged right now, but also experiencing some noticeable mood symptoms, so that's certainly not helping anything. Hopefully I'll be mentally clearer tomorrow, and able to formulate questions tomorrow about how best to proceed; something something should I continue to bump up x, y, or z; something something am I letting something important slide by accident; something something should I go try enterovirus testing again, etc.

It's been a consistent worry in the back of my mind that the present improvements have been mostly or entirely placebo, and more a result of "I think I can do more" than "I think I need to do even less". This episode indicates to me that either that is true, or some alteration in my execution of the protocol has messed up something fundamental, or both. (Third option, it's been primarily placebo because of unknown enterovirus co-infection?)
Out of curiosity - which EGCG brand and dose are you using? 

You may find a 5g dose of BCAAs, 1g of NAC and 1L of water helps ameliorate PEM, if it's HHV-related.
NB. I am NOT a doctor and all information provided is for educational purposes only.

Please consult your physician before attempting anything you read here.


  • Calluna
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    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #26 on: July 10, 2021, 04:58:58 AM »
Life Extension, 2 caps 3x/day working out to about 650mg actual EGCG per dose. When/how often for the BCAAs/NAC/water? I've already got them integrated per the protocol schedule.


Re: Calluna's journey
« Reply #27 on: July 10, 2021, 05:48:25 AM »
Life Extension, 2 caps 3x/day working out to about 650mg actual EGCG per dose. When/how often for the BCAAs/NAC/water? I've already got them integrated per the protocol schedule.
That seems like a lot of EGCG?

The NAC / BCAAs / water can be a one-off dose if things slip up. alpha-GPC can also be helpful here. :D


  • Calluna
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    • June 15, 2021, 07:32:59 AM
Re: Calluna's journey
« Reply #28 on: July 10, 2021, 06:10:28 AM »
👍 I was bumping EGCG up trying to address the PEM but can bring it back down if it makes more sense.


Re: Calluna's journey
« Reply #29 on: July 10, 2021, 05:05:10 PM »
One thing that pops up with PEM blocking frequently is the dietary aspect. It’s a big player. 

How close to the example diet would you be eating lately?