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.
Congrats on the new blog, sweetie! This is wonderful.
Thank you, my dear!
Hi, thanks for starting your blog!
I’ve had my own adventures in mystery fatigue, pain, inflammation, low blood pressure (not to mention insomnia and so many other issues!). My case is not as severe as yours, but bad enough that I’ve sought everywhere for relief. I am curious if you have tried Co-q10 (energy – its the only thing that made a near immediate, and very positive difference for me).
Wishing you health & thanks for posting.
Sorry to hear about you dealing with a mystery affliction, Jess. I know of Co-Q10 and have tried it. It didn’t do anything for me, and it’s one of those things Cheney has counseled me to stay away from. There are a number of those things that work in a healthy body that he says for us are like pouring more gas into a flooded engine. The system can’t use it and it just makes it harder on it to clear it out.
Wow such a good comprehensive description of your daily pill regime! Thanks, very helpful to know what others are on and trying
Thanks, Katrina! What I like about Cheney is that he tests things and revises his commitments over time – he doesn’t just blindly throw everything he can think of at us, like some doctors do.
Hi Jocelyn, thank you so much for sharing your regimen with us. I particularly love your comment about it Dr. Cheney told you to paint yourself blue… 🙂 You obviously have a lot of faith in him. I know this question is probably impossible to answer but do you think you can point to one or two things in your regimen that you could tell made a difference for you? I have a local friend who sees Cheney and she feels that the cell signalling factors made a huge difference for her. I have seen her go from being almost house bound to being able to do volunteer work part time. I believe others of his patients feel that taking daily B-12 injections help them stay on their feet.
All information is appreciated and congrats on working so hard on what all of know is an extremely debilitating disease.
I really can’t say. I think actually sleeping makes a huge difference. The inosine and artesunate “feel” helpful, but I can’t tease out exactly what’s doing what. I do know that Cheney’s treatment plan has made it possible for me to start writing again, which for a while I had despaired of ever doing.
Thanks Joycelyn for responding. For a while I was taking inosine and artesunate. I thought the inosine really helped my cognitive function and I was able to play the piano again. But then I ran into a big IBS problem and stopped just about everything as I was taking to try to figure out what might be contributing to the problem. I hope to start taking them again.
I also noticed that Dr. Cheney is using the beta blocker metoprolol XR. Do you know by any chance why he chose that particular one? I recently started seeing a new primary care doctor who is prescribing propranolol for her ME/CFS patients to treat autonomic nervous system problems. She has had good results with it and has prescribed it for me but I haven’t started it yet.
Thanks again for sharing your information,
I don’t know why he uses that one, but I know he prefers it to propranolol. The propranolol works better on “breakthrough” problems when I need to bring my heart rate down – like too much salt or a panic attack. That one is Rxed by my local GP.
Oh my goodness – I am impressed! And I hope and wish that they will help support you on your difficult road.
Thanks, I think, Signs. 🙂 I’d rather not be so impressive in this respect.
Pingback: Happy Blogiversary to Me | No Poster Girl
A lovely photo illustration! Good job. Much of it looks familiar. I’m surprised your not on Klonopin. Cheney seemed pretty angry when at first I didn’t want to try it. Now I am hooked. It doesn’t exactly help me fall asleep but I notice that if I take a Klonopin the night before, that day will be a better day. So now every day is a Klonopin day and on days where I have to do something big like a doctors appointment, or a flight, those are double Klonopin days. I guess you must have a bad reaction to it though or else Cheney would definitely have you on it.
Yep, there is a long, long story as to why I’m not on Klonopin. The short version is this: Knowing Cheney used it, before I became his patient, I had a doctor prescribe it. I quickly got up to 2 mg, and then it turned on me. I have an atypical reaction to every benzo I’ve tried – as I mention above, they give me screaming anxiety. So after being on 2 mg for six weeks, it turned on me and I had to withdraw from it, and that took *six months*. And it was absolute hell. I will never tangle with a benzo again.
Woah, that’s enough to make anyone rattle! However I will have to spend a little time with a medical dictionary before I make a more profound comment. 😉
Pingback: The Post-Appointment Post, 2012 | No Poster Girl
Hi, this is HannahSarah from LJ. I have the worst insomnia EVAR, or I am just very nocturnal. Depends on how you want to look at it. 😉 I’m usually up until 4am, and sleep until 3 or 4pm. 12 hours of sleep seems just right for me. Every few weeks I skip a whole night of sleep and just push through the next day, but it doesn’t ever seem to “reset my clock”. My body has preferred to keep these hours as long as I can remember, and my mom says that I was like that even as a baby.
My daily regimen is:
Zoloft, 100 mg twice a day
Buspar, 30mg twice a day
Depakote, 250mg three times a day
Zoloft 1.5mg at night
Tylenol/Codeine for pain, Tramadol when it gets really bad, Xanax for occasional panic attacks, Adderall – but only when I really need it, because it gives me panic attacks sometimes.
Like you, I have a really hard time digesting things, so I take Digest Gold supplements with each meal.
Sounds like night-day reversal (and not fun!). I’ve heard it’s one of those things that goes along with ME/CFS sometimes, but never knew anyone in particular who dealt with it to that degree.
Thank you Jocelyn! Your blog makes me feel less alone. I haven’t been diagnosed yet but i hope to get help soon. Would you mind explaining why Dr. Cheney said Gabapentin is bad for you? I don’t sleep either and have a lot of pain that no one can diagnose so I was reading about treatments for nerve pain, and remembered that you had mentioned he said it was bad for you. Thanks for reading!
Sarah, I think I glossed that here based on my experience with him to that point. He hasn’t objected to it the last couple years. Thinking back to what he said about it, I think his concern was the way it’s metabolized – he told me there’s a dosage point with that drug where it starts being metabolized faster, and the more you take, effectively the faster it wears off. But it’s been years since we talked about that, so I can’t say for sure that that’s exactly right. I know some ME/CFS friends who get a lot of benefit from it, and others who have had bad experiences with it, so like anything in this illness treatment-wise, I think it’s variable.
Thank you! I’ve been reading your blog for about 3 weeks and I cant wait to see your next post! I have been on the same path you were on with sleep meds. I don’t tolerate benzos or typical sleep meds, I no longer can tolerate trazodone for more than a week at a time, and I just managed to get off klonopin (it took me four months) so I am struggling again. I have had some small success with magnesium, enough to prevent real suffering, but am looking now for other solutions.
Hi, Thanks for sharing.
Are you still on he same regime after 4 years? I would be interested in what you changed.
I have fortunately gotten off the gabapentine and a few other ineffective pain meds (topomax, tramadol) that all caused severe side effects.
I thought I was taking a huge variety of vitamins and suplements until I saw your long list of mostly meds. I am still new to this as I was only diagnosed 9 month ago after doing the usual 2 year specialist round trip.
I have started equilibrant 4 weeks ago and noticed some improvements, now I have to see if it holds for the next 6 month and then try to figure out what I can safely drop.
Did Dr. Cheney ever tell you what might be the cause of your condition or is he focused on treating the many symptoms.
Good sleep remains elusive.
Andreas, I’ve thought of doing a new regimen post, but haven’t organized myself to do so yet. I’ve dropped and reduced a few things and added some others.