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

4 thoughts on “Small improvements, pill schedule, symptom recap

  1. My body reacts the exact same way to opiates. When I am feeling especially horrible, either after exertion or during a bad herx, Vicodin actually makes my body feel so much better. That’s interesting that that’s why! I hope that that LDN really helps you and you can start it in a few months. :D

    Yay organizing pills! I’m also happy your pill volume is less, and it’s pills that you know help, and you need. That’s so important. @___@

    *hugs you* I also have been having intestinal pain but I think for me it’s with all the pills. So glad you’re having small improvements! :) I hope the small improvements continue until it becomes big improvements!

  2. Yeah, I mean, I can understand feeling better because, hello, endorphins, that’s their job. But.. going from oxygen-dependent and bedbound to sitting up and organizing, from just half a pill? That’s.. very drastic. I’m definitely excited to try LDN.

    I agree. Very important. You lose motivation to take them if there’s no effect.

    Thank you! :)

  3. Hello- did you ever try the LDN? I am considering it too and would love to hear if anyone has tried it what their experience was. Pardon if I am not entirely coherent right now, I used to win awards for writing and verbal abilities but this ME for 20 years has put my verbal brain in a bit of a high-speed blender. :-)
    I am trying to come off methadone for pain management after what I read about LDN. If ME is viral, I need my immune system to work in a normalish fashion to fight it, right? At the same time, I also have a very high ANA titer so do I suppress the immune system to stop the ANA or do I boost it to fight the virus? LDN seems to help with normalizing immune function in autoimmunity as well as infection like AIDS. Veeeeerrrrrrrrryyyy iiiinnnnteresting!!

    • I can’t wait to try the LDN! In fact I have a doctor set up for it! But I have to wait until I’m passed “the headache stage” of my infection treatment. The only thing about LDN is that you cannot take opioid pain relievers, and right now I need them several times a week. But after that, I definitely plan on trying it. :)

      Speaking of ANA, and tying back to the other comment, almost everyone I’ve talked to with Lyme disease has a positive ANA… I actually just mentioned that in one of my recent posts! So that’s another reason for you to see a literate physican about that, in the event that it DOES apply to you.

      It’s a tricky situation to be in, and I deal with that with the M.E., which is helped by steroids, but then the infections, for which I absolutely cannot take steroids, so…! I feel worse whenever I activate my immune system, so my general rule of thumb is just to make it strong with a healthy diet and help it kill the bugs with antibiotics/antivirals, but not make it active all the time because it already is.

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