UPDATE: Intuition was right, not a herx

I KNEW IT! My bad experience in month 9 of treatment was not a herx. It was a toxic reaction to rifabutin!

For me, it started on day 6 and looked a lot like the flu. I experienced:

  • Intense fatigue
  • Feeling a bit woozy
  • Weakness upon standing
  • Fever of 102
  • Nausea / loss of appetite
  • INCREDIBLE head pressure with pain at bridge of nose and base of skull
  • Heavy sweating with dehydration and cramping in legs\
  • Periods between fever where body temp was very low (94-96)

After a few days, I also developed a vaginal yeast infection. At this point, I started calling doctors.

First, I called my Lyme doctor. I told her I think I’m having a toxic reaction to these meds. She insisted this was a herx. I explained that it didn’t feel like any herx I’d ever had, and pointed out that it’s listed right there in the paperwork as being a toxic side effect. But she insisted this “side effect” originated from folks who had Bartonella in the trials and that for them it was a herx too. Keep going she said. Alriiiiiight.

A week later, I went to see my regular doctor for an unrelated visit and, upon telling her how I was feeling she worked me up. She insisted it was all from a bladder/kidney infection. She’d pee tested me and apparently it was positive, so she started me on an antibiotic for that. She took me off of my Lyme meds for just a couple days in case kidneys were impacted.

The next day, I developed back pain and intense calf pain which can be a sign of even bigger kidney trouble, so my primary care doc sent me to urgent care. There, my pee test was totally normal and my flu test was negative. STRANGE. All kidney function looked great according to blood work.  However, my white blood cells came back VERY low. “Must be a very bad virus,” they said.

Within a couple of days, I was starting to feel better, so my primary care doctor gave me the go ahead to start my Lyme meds again. BOOM. 102 fever, intense pain, nausea and back in bed with the flu just a couple hours after taking Rifabutin again. At that point I knew without question it was Rifabutin.

I called my Lyme doctor back and, once again, she insisted it’s a herx and told me to lower my dose and just keep going. So for a few more days, I took my pill at night – each time getting  a high fever and pain. At this point I got really depressed and frustrated and wasn’t sure who or what to trust.

FINALLY I went in for my monthly bloodwork and my Lyme doctor called me, “Karla… you’re having a toxic reaction to that medication… stop it right away.” SHEEEEEEEEEEESH. My white blood cells were all dangerously low, which caused the flu-like reaction and also left me susceptible to other infections. It’s a known side effect of rifabutin.

So moral of the story? Trust your instincts. And if you get the “flu” while you’re on rifabutin, get your bloodwork done to be sure.

 

 

Treatment Recap: Months 8 and 9

Time flies! I am nearing the end of month 9 of my treatment. I’m not going to lie, the last couple of months have been rough.

During month 8, I was on Rifampin. I got a good little herx from about day 7-14, then the rest of the month I was pretty severely fatigued and depressed. I suspect this is because rifampin alters the speed at which thyroid meds are metabolized, so I felt very hypothyroid all month long.

In month 9, I switched rifampin for rifabutin and cefdinir and energy + mood was definitely better. However, I had a strange reaction to rifabutin that basically gave me the flu for most of the month. This is listed as a side effect of toxicity associated with the drug, but my doctor insists it’s a herx. I’ll be dropping dosage a bit and continuing. We’ll see if the “herx” dies off after while. My white blood cell count has also dropped, and without any ability to fight it off, I got my first vaginal yeast infection since treatment started. And well, if I wasn’t depressed from the meds, a multi-week flu and itchy lady parts has left me feeling pretty bummed!

Overall, I’m feeling pretty “over” treatment at this point and craving some normalcy. Hopefully things in month 10 go a little more smoothly.

Things I have seen more of in months 8 and 9:

  • Depression
  • Fatigue (month 8, on rifampin)
  • Occasional pressured right ear
  • Jaw pain and stiffness, bilateral
  • Flu like syndrome when starting rifabutin in month 9
    • Fevers in 99-102 range
    • Horrible head pressure with pain at base of skull and jaws
    • Muscle aches throughout body
    • Nausea / lack of appetite
    • Full body sweating
    • Intense fatigue
    • When fever broke, temps dropped to 94-96 range
    • After several days of this, very painful cramping in calves
  • Brain fog, feeling a little dumb, and occasionally kind of woozy (month 9)
  • Eyes sort of just not focusing… it’s like eye-specific fatigue
  • One episode of both feet going numb while walking to blood draw

Things I have seen less of in months 8 and 9:

  • Under arm sweating
  • Joint pain
  • Anxiety
  • Trouble sleeping
  • Sciatic pain
  • Ringing in ears is still there, but hasn’t seemed to be particularly bad as it was in month 7

I never did make it onto biofilm busters like we planned, and I haven’t done any pulsing of cyst busters either. I doubt I will in month 10 either. I’d like to get through this little rough patch, whatever’s causing it.

Cross your fingers for me!