More Alive Than Dying

It's been a little while.  I apologize that a lot of this is for me to be able to look back on in the future...


To recap:

June 10th appointment:  
My appointment went well overall.  She was encouraged by my report of how I'd been feeling over the last month, even though I told her that May had been pretty awful and I had all of my usual symptoms of fatigue, pain, twitches, neurological stuff, the whole work-up.  She was encouraged because regardless of the number of my symptoms (and oddly, even the severity), for whatever reason, I felt different.  I told her I felt like there'd been a shift- that I can't really explain it, but I just feel different.  Stronger, perhaps.  She told me that the way I was describing it was really encouraging; that as soon as her Lyme patients start describing how they feel the way that I was, that they're reaching a different point in their treatment.  So we're definitely headed in the right direction!  Can I get a WOOT!!


I was disappointed that my doctor didn't remember that I'd had an echocardiogram or an EKG done.  We'd already gone over the echocardiogram results at my previous appointment, and I was supposed to be getting the EKG results at this appointment.  To save you from my feelings, I'll skip to the good news-  both my echocardiogram and my Holt monitor (2-day EKG) results were normal enough to not be worried about it.  Thank the heavens!!

So any dysrhythmias that I'm feeling are a symptom of the Lyme, but they're not currently problematic.  When she was listening to my heart, she could hear that there's a steady rhythm, but the first beat is much stronger and it sounds like my heart is working hard...  Makes sense, because that's exactly what it feels like.


Protocol:
We're staying on the same medication- nothing is changing.  For my own future reference, this means:

Antibiotics:
Rifampin- 300mg, twice daily
Azithromycin- 250mg
Cefuroxime- 500mg, twice daily
Bartonella tincture- Half a dropper, twice daily

Other Prescriptions:
Fludrocortisone- 0.1mg
Hydrocortisone- 1.75mg

Supplements:
Interfase- 675mg
Evening Primrose Oil- 500mg
Vitamin D3- 5,000iU
Citramins II- 1 capsule
Niacinamide- 500mg
B Complex #6- 1 capsule
Zinc Citrate- 30mg
Cardio Mag-Lo-Plex- 1 tablet
FlexNow- 1 capsule
Probiotics- 5+ billion CFU's, 450 mg


For the first time she gave me a rough estimate of a potential time that we may begin experimenting with coming off of the medications.  She said we'd probably switch antibiotics in September or October (to Doxy, which makes you super sun-sensitive, so we'll wait until after summer), and if things keep going well then we may try coming off of some meds in December to find out if I relapse or stay strong.  I'm not holding my breath, because every time I see her there's a new plan.  But I don't even care if it's December or not.  It was so refreshing and encouraging to just hear a potential timeline for once; to feel like I have something I'm actually working toward, a goal I can hit, instead of feeling like we're aimlessly treating for God knows how long, with no possible end in sight.  No matter what, we won't do this until I've been feeling almost entirely well for at least 3 months in a row.
For the first time I actually feel like there's an end in sight though.  It might still be months or years away (she still says it wouldn't be abnormal to treat for about two years), but I'm hopeful that this will get into remission and that we've made a dent so far.  When I stop and think about it, I'm shocked that I'm feeling as good as I'm feeling right now.  17 years of this disease and after about 10 months of treatment I'm beginning to feel better.  Unfortunately that is so much more than so many late-stage Lyme patients can say.


Notes for my future self:
My blood pressure was 100/60 at June 10th's appointment, which was an improvement.  She did say that my white blood cell count was a little low- the cutoff is 3.4 and mine was 3.3- nothing to be concerned about, but something to keep an eye on.  We'll check my vitamin D levels again when I get my bloodwork done this Wednesday (7/8/15).  She gave me a supplement to help reduce inflammation and joint pain...  Not sure if it's been helping or if I'm feeling better in that way because I was already feeling better in that way.  She wants me to try the slippery elm to help with herxes, but I'm still worried to try it since I had a reaction years ago.




It's strange that when you read my symptom log, it still has quite a few symptoms, but my response is "great!" every time someone asks me how I'm feeling lately.  I think the key is noticing that they're not happening nearly as often (previously it was all day, every day, all various symptoms overlapping and hitting me at once; and I was so used to that, that when I would write in my symptom log, I knew that was what I meant- constant).  Now, I may write down that I have some pains, twitches, internal tremors/vibrations, etc, but they're not nearly as often and they're shorter-lived.  They're so short-lived or insignificant compared to what they usually are, that I'm almost forgetting to write in my symptom log altogether.  That says a lot to me.  Overall I'm having much less pain and much more energy.  I have been hitting a wall daily since I'm trying to get so much done.  I've been napping in the middle of every day for about 2 hours...  Still an improvement since I'm able to get stuff done before and after that!


How I'm currently feeling:
I told Tyler that for the first time since I started treatment, I feel like I'm more alive than dying.  I know that sounds dramatic.  I mean it.  I felt like the life was being sucked right out of me, and now I feel like it's starting to be breathed back into me.  I love that feeling.  And here come the tears.


It's a good feeling.