Treatment Recap: Months 20 and 21

Time is FLYING! I guess I forgot to do a treatment recap for month 20?? Let’s start there.

As you can see by the indulgent emotional post, I had a bit of a hard time in month 20 in two very specific ways. You see, my doc had me start a new drug regimen including minocycline and rifampin.

Minocycline has, in the past, caused me pretty bad intracranial hypertension. And it did indeed cause that again, but to a much lesser degree than it did before. I experienced a much higher frequency of plugged ears is all. On the one hand, this is kind of amazing because in my 2nd month of treatment, only 50mg of minocycline 2x a day sent me reeling with this symptom. And now, I am tolerating 150mg 2x a day just fine. HOWEVER (and it’s a big however) I am only taking meds 3x a week. So the jury is still out for me on whether this is a herx reaction caused by die off of bacteria in my brain, or just a nasty side effect of this medication. Overall, this was very tolerable and not a big deal. It just made it a little hard for me to tell when I am around mold, since plugged ears is my usual tell.

What was harder was being on rifampin. Within just a few days of starting up a pretty low dose, I became extremely tired and SAD. And I stayed that way pretty much the whole month. I thought for sure this must be some kind of bartonella herx, but my bloodwork revealed that it was actually my liver having a hard time processing this medication. So when I went in for my appointment, my Lyme doc had me stop that one right away. No more rifampin or rifabutin for me. My body just can’t metabolize them.

Official symptom list for month 20:

  • Fatigue
  • Depression
  • Plugged ears (on mino days)
  • Ringing ears (no change there)

One thing that got much better in month 20 was my muscle spasms and pain. I fully attribute this to going back on 4 pills a day of boluoke, just as I’d suspected in my month 19 recap. If you’re experiencing muscle pain and spasm, I fully endorse this as a good option for relief.

As I started month 21 of treatment, I was feeling pretty good. My doctor had me discontinue to rifampin, continue on minocycline, and add in Zithromax and Bactrim single strength. Continuing to take those meds only twice a day 3x a week, and using some herbs continuously, I felt pretty good in month 21.

Just as I’d done in month 20, I was riding my bike 25-30 miles every weekend. I also started up a boot camp class about 3x a week. And I up my diet a little more. It felt VERY good to be getting back to myself. And being in the boot camp class, especially, meant everything to me.

But the month wasn’t without a little struggle. On my first night of boot camp, I experienced an ocular migraine about an hour after class. Strangely, I had another one a week later that happened nowhere near exercise. I suspect they had something to do with blood sugar dips, as that’s what the two incidences had in common. Strange to me that the long-distance cycling hadn’t triggered anything similar though.

In month 21, I also experienced a couple kind of stabbing headaches on the left side of my head. They felt VERY muscular, and came on and went away very quickly. I suspect by feel of hand that I have a cervical disc out of place and am awaiting an adjustment from my chiropractor. We’ll see if he agrees!

When I initially went into see my doc, I reported being almost symptom free. The headaches and my forever ringing ears were the only thing left on my list, and the headaches seemed circumstantial to me. (Of course, in addition to the plugged ears which I still believe is simply a side effect of minocycline.) I left her office making claims of being near remission with a plan to start cyst busters as my last stage of treatment.

Well, unfortunately, just a couple of days later – before I’d even sorted out my first week of month 22 meds – I started to have pain in the bottom of my left foot again. And in my left knee. And transient pain in my wrists. It seems that perhaps my two months of 3 day a week, small dose medication regimen has left me prone to a bit of a relapse.

I alerted my doctor today and she called a bit of an audible. Instead of the word “remission” our new R word is “relapse” and cyst busting is going on hold. Instead, my 3-day a week regimen of small dose meds will become a 7 day a week regimen. And we’ll try to get everything back in check.

This is frustrating and scary and I hate even writing these words. But I suppose this is just the way of things.

The official symptom list of month 21 is:

  • Plugged ears (on mino days)
  • Ringing ears
  • Two ocular migraines
  • A couple left sided, short-burst headaches that seem muscular in nature
  • Left sided foot pain
  • Knee and ankle pain, especially left knee
  • Some transient wrist pain

I am nervous to begin month 22’s treatment plan. I am especially nervous to go on minocycline 7 days a week. I am nervous that the intracranial hypertension will get worse, that my ears will be plugged on an ongoing basis and that maybe even some of that scary bad vision from the pressure of my swelling brain on my optic nerves will return. I get scared of reporting adverse reactions like that to my doctor, for fear that I’ll be told it’s a herx when I really think it’s a side effect. Le sigh. BUT. This will all be whatever it will be.

I will step back a bit onto more treatment, and hope for the best. One day at a time, as they say. Wish me luck, and swift passage through this little downturn.

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How am I treating? It takes whole-body healing. Here are my areas of focus:

  1. Under the care of an ILADS Lyme-literate doctor, I am using antibiotics, biofilm busters, supplements and herbs to treat Lyme and Bartonella.
  2. For several months, I used 1 scoop of Cholestyramine twice a day to deal with mold exposure from my ill-fated home purchase in October 2016.
  3. I follow a dairy/egg/gluten/sugar/caffeine/alcohol-free diet. I eat paleo type meals for my “core” meals, but I do also eat things like rice, beans, tortilla chips, tacos, thai food and the occasional vegan / gluten free pizza when I’m dining out with friends.
  4. I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, I let go of a romantic partnership that wasn’t supporting my healing, and I made a strong investment in a positive social network (online and off).
  5. In month 3, I did LymeStop in Idaho in addition to my antibiotic therapy. while I am skeptical that it was healing, it certainly may have helped. I did one follow up visit 3 months later. I did not take any of the LymeStop supplements.
  6. In January 2016, I had my 23andMe results analyzed by Bob Miller. And although  I discontinued his supplements, I had been on them for the entire year of 2016.
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2 thoughts on “Treatment Recap: Months 20 and 21

  1. I have every single symptom of intracranial hypertension and also oscillopsia. Thanks so much for all the research work you do. It is comforting to be able to put a name to these awful things and to not be alone in my suffering; even though I’m just so sorry that you have them.

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    • UGH. So sorry you’re dealing with those. Both bad ones. Oscillopsia was really hard on me. Cascade Dizziness and Balance PT was a huge help in providing me with exercises that helped my eyes line up again. Have you worked with them yet? They’re truly great. http://cascade-dizziness.com/

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