Before I got sick (I have a feeling I might start a lot of posts this way), I never took cold medicine, and hardly ever took an ibuprofen.
Above is my daily diet of tablets, capsules, elixirs, gels, and sprays these days. (Okay, maybe it’s not as high as 56; some of these are, admittedly, split for divided dosing.) It sometimes feels like there’s no room left in my stomach for actual food. My specialist is infamous for protocols as long as your arm, which include a mix of supplements and pharmaceuticals. The two-thirds on the left are during the day, the one-third on the right are for sleep.
And here’s the breakdown of what, when, and why. Click to embiggen.
Click through for the rest of the story. It’s a long ‘un.
First, a little disclaimer: This protocol is customized specifically to my particular case of ME/CFS. Please don’t change any of what you’re doing because of reading this.
1. Breakfast pills. These are:
- Two tabs Betaine, a stomach acid supplement, because my body no longer produces enough stomach acid to digest food (this is known as hypochlorhydria or achlorhydria). If I don’t take this, things come through, uh…unchanged. (Sorry.)
- Two tabs Ultrazyme, a pancreatic enzyme. This is basically bile, and it tastes like it. Same thing as the betaine; my body doesn’t produce enough of this to digest food.
- One stool softener, because I take a lot of stuff (mostly for sleep) that has an unfortunate tendency to gum up the works. (Again, sorry.)
2. At the same time I take those pills, I take:
- Two tabs Inosine, which is an immune modulator, the closest thing we in the States can get to Immunovir.
- One tab Metoprolol XR, which is a beta blocker; I take this because I take some other stuff that tends to run my heart rate up.
- One tab Sam-e and one tab P5P, both to assist in unblocking the methylation cycle and the downstream effects of that.
3. Four times a week, I take one capsule Artesunate, which works as an antiviral.
4. On the three days I don’t take Artesunate, I swish and spit with wormwood extract, (yes, that wormwood) which has similar effects to the Artesunate.
5 and 6 are special gels produced by Cheney that are rubbed on the skin. Five, which I use in the morning, is produced with animal heart, brain, and pancreas. Six, which I use in the morning and afternoon, is placenta. (I know. How do I still call myself a vegetarian? Honestly, if Cheney wanted me to paint myself blue and run down the street naked in the snow with a raw steak clenched in my teeth, I’d do it.)
7. This is a DHEA gel, which goes on with the morning and evening gels, to increase NADPH, which is low in ME/CFS.
8. When I rub the gels on my skin, I am to take half of one of these glucose tablets. Don’t worry about the size; they dissolve in the mouth. They taste like a giant Smartie. These are easy to take. Why do I take it? Glucose provides a six-carbon energy source to help drive both catabolism including ATP and NADH production as well as anabolism including NADPH which improves glutathione (GSH) support as well as P-450 support via NADPH. Cheney wrote that. I’m not even going to try unpacking it. They taste good, do something helpful, fine with me!
9. Lunch pills, same as the breakfast pills, except no stool softener.
10. These are the 3 p.m. pills. They include:
- One capsule Gabapentin, which helps with pain. Cheney says I have to get off this; that it’s bad for me. I’m trying, but it helps me sleep and I don’t sleep without it. It has the unfortunate quality of tasting like earwax when you burp after you take it. I am not lying.
- The other seven are 1000 IU Vitamin D tablets. I don’t get outside, and the disease seems to hoover up vast amounts of this vitamin, so I take a lot of it.
11. Dinner pills, same as the breakfast pills, with the addition of another beta blocker.
12. Another one of Cheney’s gels, this one applied near bedtime, along with more DHEA, glucose, and inosine. This one is pancreas, liver, and kidney extract. Delicious!
And here begins the sleep cocktail. There is enough here to drop a football team, but sometimes not enough to do in 112 lbs. me.
13 & 14 are the first salvo in the War on Insomnia. I take these at bedtime.
13. Doxepin elixir. This is an antidepressant.
14. This includes:
- 2 Betaine – yes, I even need these to digest pills.
- 3 300 mg. Gabapentin – An anti-seizure med.
- 200 mg. Seroquel – An anti-psychotic (That’s half a 300 and half a 100.)
- 2 15 mg. Mirtazapine – An antidepressant.
- 1 20 and 1 10 mg. Baclofen – A muscle relaxant.
- 1.5 Norco tabs, which are like a Vicodin, but with less Tylenol.
15. Magnesium spray. This is supposed to help with sleep. Other people I know do magnesium injections, but we’ve found they cause my heart to race very badly.
16. Ketamine gel. Yes, Special K, horse anesthetic! Only a little bit of it though; not enough to have any fun with. This is a topical cream, not an injection, thank goodness. It’s also supposed to help with sleep.
17. Because one round of pills will not carry me through the night, I take a second round some way through – exact time depends on whether the first round worked or not. This includes:
- 2 more Betaine
- 200 mg. Seroquel
- 15 mg. Mirtazapine
18. Finally, these are my backup pills, which I can deploy if nothing else is working.
- 300 mg. Seroquel
- 20 mg. Baclofen
- 1.5 tabs Norco
Now, you may have noticed a total lack of the usual sleep drugs there. The short version is that they don’t work for me. Ambien, and everything in its family, give me screaming panic attacks. All benzodiazepines (your Xanax & friends) do the same. For that reason, I take all this weird stuff that just happens to have somnolence as a side effect.
At least I don’t have to worry about depression, seizures, psychosis, or muscle spasms! Is that a load off my mind.