As promised, here is my new protocol. It does, but doesn't vary very much.
Increase Dapsone to 75mg for 30 days, then to 100mg.
Continue Mycobutin every night.
Continue Leucovorin.
Add Sporanox back in three times a week.
I'm also still on Plaquenil, which I need to ask about since Cryptolepis seems to be an excellent herbal alternative for that and I forgot to ask for a refill. I was having terrible brain fog that day. We made the almost 3-hour trip minutes before my appointment time.
Here's where the protocol changes come in...
Add in Cryptolepis for 13 days. One day off. You can read about Cryptolepis here.
Add in Tangarana for 13 days. One day off. You can read about Tangarana here.
Repeat Cryptolepis and Tangarana as above.
I have decided to titrate the Cryptolepis and Tangarana. The highest dosage for Cryptolepis is 20-40 drops. I'm doing 10 drops the first week and 20 the second. The Tangarana highest dosage is 30 drops. I'm starting that out at 10 drops the first week and 20 the second, working my way up to the maximum dosage for both.
FYSA - Cryptolepis is DISGUSTING! You put the drops in a glass of water or juice.
Water - gross. Apple juice - no bueno. Cranberry juice (100%) with a couple of drops of Stevia - getting warmer. A tablespoon of sweet tea - there's Cryptolepis in here?
Let's talk about Tangarana. This is something I got to teach everyone! I love teaching but, more importantly, I love the fact that there are people who will listen to me, look up what they don't know, consider how it will benefit me (and other patients), and then say they think it's a good idea and I should try it. This was first brought to my attention in a phone conversation by my previous LLNP. Tangarana is really pretty new. When I asked the doctor about it and he looked it up he said, "It pretty much fixes everything except death!" LOL It does look really good and I'm excited to try it. I hope it tastes better than the Cryptolepis, though.
So, what has happened since I started on all of this last week? Honestly, I've been fighting overwhelming fatigue that has gotten progressively worse over the week. The fun thing that's started again is that my lips and lower third of my tongue are numb. I know that's from the Cryptolepis. When I first started the Mepron/Azithromycin combo pulsing Tindamax in, I had the same thing on a much larger scale. I felt like I'd had a nerve block on my face. You could have drawn a line straight down the midline and I couldn't feel anything on the right side...half of my nose, forehead, gums, and tongue including my entire right cheek. It felt so weird. That's what partial Bell's palsy is like. Since increasing the Dapsone, I've discovered I have to eat enough when I take it or I get pretty sick. That's hard to do if you don't feel like eating in the morning. I make it happen, though, because I don't miss doses even if I have to chew on Nauzene or guzzle Emetrol. Hopefully, I'll be able to tolerated 100mg next month. That's why they have you work your way up. I am still taking various supplements and probiotics in addition to all of this.
One last thing before I forget... I was told to do a gallbladder-liver cleanse. I already had two types of tinctures for that and started it before all of my new meds were filled and supplements received. In those 4-5 days of starting that tincture, my face started breaking out like it hasn't in years. That was directly related. It's forcing something out of my body. It's interesting to see what happens when you add things. You have to stagger it, though, or you may never figure out what medicine/supplement is causing what signs/symptoms.
Now, as I'm finishing up writing before I publish this post, I realize I'm probably going to have to lay down and take a nap. A nap...after 9 hours of sleep last night. I'm going to try to fight it for a little while longer because my role as a wife and mother doesn't change just because I'm chronically ill. These people expect to eat EVERY DAY! :)