Small improvements, pill schedule, symptom recap

So, recap, I’ve been on Rifampin for one month. Last time I updated, I had just added 100mg of Doxycycline to the mix during the night. The Rifampin dose the next day caused a big herx. I haven’t had that severe a reaction since, which is good. I’ve actually felt relatively (relatively!) okay since then. But I do need to mention something that happened, yet again:

When the excruitating headache started, I needed a Lortab (Vicodin). I know I’ve mentioned it repeatedly, because nearly EVERY TIME I need this pill I end up having to talk about how I randomly ended up feeling less sick in general, and thus I get excited to try Low Dose Naltrexone (LDN) all over again. My Lyme treatment needs to hurry on up, so in a few months I can start that potential therapy! I think it’s going to be awesome.

I’m seriously wondering whether my feeling so incredibly terrible last week could have been at all influenced by my headaches having temporarily died down from Lortab-level to Fioricet-level, which meant no needing opioids. And there’s that little fact that not only do opioids relieve severe pain, but they also alter the immune system. For instance, long term use of opiates is tied to immunosuppression and a greater risk of infectious disease, even the progression of infectious disease, including AIDS. And yet LDN, which also works with opioid-receptors to upregulate the body’s version of opiates (endorphins), has been shown to slow the progression of AIDS and auto-immune diseases. So really, there’s no telling what all is happening that makes me feel so much better. I just.. once again, really, really hope the improvement I see from opiates can also be given to me by LDN.

Symptom wise, my intestines still hurt. I can’t blame the Doxycycline because it started before I took it. I hope it’s something minor like inflammation or adapting to my new diet changes and that I’m not developing any major problems like a c. difficile infection, which is what WebMD suggested to me when I randomly ran through my symptoms. (Then again, it’s WebMD, which also means I could have a brain tumor, right? Haha.) I’d been having several episodes of intense nausea and motion sickness, but I haven’t had one since Friday night. (Which is unsual… To have your nausea stop when you start taking Doxy. Ha!) In case it starts up again, my anti-nausea ginger gum has arrived, which is amazing stuff. Oh, I also haven’t needed my oxygen since Thursday, either. I still require my wheelchair after taking the Rifampin, but I can get out of it earlier in the day than I had been when I first started it, and in fact yesterday I stood up for several minutes! It felt so strange, but it was nice. I did notice that today’s leg (foot?) dystonia was worse when I did try to walk, so it’s more because of that and POTS that I need it lately, instead of the horrible leg weakness. And.. I’ve had several episodes of arm numbess, which I know I’ve recorded in here before, but I’ve no idea what it’s from. I had it on January 31st that I last wrote down, and then I had it again last night. I think I remember another episode of it between there…

Today I organized my medication/supplement chart that I’ll be working with starting this Thursday.

  • 11am: Coffee (half regular, half decaf)
  • 12pm: Doxycycline 100mg w/ FOOD; Olive leaf extract 500mg; Vitamin C 1g; Aloe vera gel (5g, pure inner leaf gel)
  • 1pm: Rifampin 300mg
  • 3pm: Probiotics; Antifungal (which changes every three days)
  • 8-10pm (dinner time): Olive leaf extract; Vitamin C; Ubiquinol 100mg; L-carnitine (fumurate) 1g; Calcium/magnesium/vitamin D/zinc; Vitamin D (extra 400 i.u.); Aloe vera gel
  • 11pm: Doxycycline 100mg; Rifampin 300mg
  • 1am: Probiotic; Antifungal

As far as I can tell, my father will be responsible for bringing me coffee and food to take with the Doxy in the “mornings,” then my mother will be responsible for food in the evenings/night. It’s “only” 22 pills per day, but these are all things I need, so I feel fine about taking them (compared to when I used to be on more that weren’t even guaranteed to lead to any improvement). I also supplement potassium throughout the day in my water, and add iodized salt to everything (including water); I do not know if the cysts on my thyroid stop multiplying because I increased my iodide intake or because I finally started antibiotics, but I’d hate to stop the iodide and have them start up again! Time will tell.


a rainbow at night

Lortab, outings, and strange temperature flucuations

Yesterday our goal was to make it out of the house to take me grocery shopping. I managed to get dressed, so off we went! But when we got there, all the mobile scooters were either taken, or charging and not available for use yet. So mum came up with the idea that she would push me in my shiny red wheelchair, while my niece Nikki would push the shopping cart alongside us. And together we roamed around for about an hour, collecting my shopping list. We actually had fun doing this, which was amazing. We made it a family affair, and it was just.. nice.

When we originally left, I didn’t think I was going to make it. My heart symptoms are worse and thus I couldn’t breathe well without said pressure in my chest, and.. it wasn’t looking good for me staying upright. =\ But THEN I found half of a Lortab in my purse! And so I took it, and was able to “go shopping.” (Granted I’ve been on Vicodin for four days now because of that persisting severe headache, but yesterday it was mostly gone.) I’m sure I’ve mentioned before, but hydrocodone has this additional effect of giving me more energy and better cognitive ability. I’m always amazed at how much half a pill can work at improving my overall level of sickness, and I’m not sure what it was doing in my purse, but I was so glad it was there! It took about half an hour to work, and then I was able to sit up, and breathe, and think, and.. function. Incredible. I stayed in the car while Mum went into the other places for me–post office, pharmacy, discount store–and by the time we arrived at the grocery store, I was ready. (This effect that hydrocodone has on me is what makes me eager to try Low Dose Naltrexone, which also binds to the opioid receptors.)

Truth be told it would have been smarter yesterday to not override my body’s signals, and go back home, because now I have to pay the consequences, but… It’s not my fault that everything I do comes with payback. I don’t have the option of pushing myself 99% of the time, unless it’s due to medicinal intervention like hydrocodone or caffeine. And everytime I use one of those, I have to pay extra for it. But really, sometimes you just have to pay the consequences, lest I’d never get to do anything. I’d never shop or get to the doctor or be able to take a bath… That’s just how it is. I consider myself lucky that I am able to recover from it, instead of being at a level where every trip out of the house would incapacitate me for the next few months. And honestly, if I didn’t have my medicine (olive leaf extract, ubiquinol, l-carnitine), I know I’d be at that level. A couple of months without the OLE, and a week off of the co q-10/ubiquinol, taught me exactly how much I depend on them…

So after the trip, on the way back home, something odd happened, that hasn’t happened in about two years. My temperature dropped to 97.8°F; I was freezing. My temperature goes up and down between high-98 and low-99’s, but it hardly ever drops into the 97’s in the middle of the day. About six hours later, it went back up to 98.6°F, and then half an hour after that, down to a normal 98.2°F… This morning I woke up at 7am, took my temperature, and it was 97.1°F. I took it again when I woke up at 1pm, and it was a normal 98.6°F, where it’s been most of the day with mild (normal!) fluctuations. The last time this happened was also after a shopping incident, so I can only assume this occured because of the forced exertion (or rather, me overiding whatever level of sickness I was at before taking the hydrocodone).

Also for the record I am now on my 12.5mg dose of Zoloft to control the OCD and PMDD. This was started on the 1st.

I think I got a migraine last night, but because of my other headache, I didn’t notice that’s what it was until much later. But I had such typical migraine symptoms! Right-sided pain and facial numbness… I don’t know how I didn’t realize what was going on! (Ironically, last time I was in Walmart I got a migraine, too. And the time before that, as well. And every time I go in there my nose starts to run, no matter what season it is. I wonder if that’s significant? I hope I’m not developing some sensitivity to the place. But anyway…) Not paying attention and thinking it was just my other severe headache (which is still trying to go away completely), I took pain meds for that… But of course it was a migraine so they weren’t very effective! They helped me cope, but did nothing to actually alleviate it. When I woke up “this morning” I finally realized where I’d gone wrong, and lucky for me I was able to take migraine meds and they still worked to get rid of it. In the past I’ve had terrible luck with stopping migraines after they’ve begun, so this really was quick lucky!

Ah, and that’s enough typing for me today. I need to be preparing for whatever sort of crash I may get after yesterday.

a rainbow at night