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Posted 12/12/2014 9:08 AM (GMT 0)
Just saw my first real Lyme Dr yesterday (Dr. R in Manhattan) and he prescribed the treatment plan below (which doesn't include all the extra supplements he told me to get). That's a lot of drugs (and incredibly expensive). And I didn't really realize how long term and obtrusive the IV would be (a tube sticking out of your chest). Does anyone have experience with a treatment plan like this or have any thoughts on it?

Medications:
• Coartem tablets - 1 tab 2x day for 5 days, wait 3 days, then repeat with 2 tabs 2x day for another 5 days (babesia)
• Wait 5 days
• Zithromax - 1 tablet 500mg 1x day with food for 5 days (don't take on weekends) for 8 weeks (all 3)
• After first week of Zithromax, add Mepron - tablespoon or 5 ml 2x day, 5 days week for 8 weeks (babesia)
• Bactrim - 800mg, 1 tablet 2x day, 5 days week, 8 weeks (all 3)
• IV Rocephin - daily, long term -- via PICC line or Hickman line
- Valtrax For epstein barr - (prescribed by the previous doctor I saw, and Dr. R said we'd include it, but I forgot to ask when it should go into the schedule)

Diet:
- No alcohol, gluten, sugar

Weird ride this is. Thanks for your thoughts in advance.
Posted 12/12/2014 12:29 PM (GMT 0)
That is a lot of medication and a pretty aggressive plan. I hope it will be introduced gradually!

Sounds like you have you have a good doctor. Your challenge will be to manage the herxheimer reaction. Detox!!

Hooray, you are on your way back to health!
Posted 12/12/2014 2:23 PM (GMT 0)
Wow! That does sound like an intense plan. I can't remember your story. Would you mind sharing? How long were you sick before diagnosed? What were your symptoms? Did any of your labs come back positive? ......
Posted 12/13/2014 5:28 AM (GMT 0)
Thanks for the replies.

I was diagnosed with Lyme in 2006 when I finally went to the doctor for bloodwork regarding my chronic fatigue. However, I've had this horrible fatigue for as long as I can remember, and just tried to deal with it; so I think I very likely had Lyme before at least 1998 (first year of high school) since I used to play in the woods / nature all the time as a kid, but pretty didn't go near nature by high school and on. I'm 30 years old now by the way.

So I received 4 weeks of Doxycycline in 2006. No change in symptoms, so I just accepted it as the status quo. In 2010 I started my first real job, which is very mentally intensive. I'm smart, but my concentration has always sucked and I started to feel like my mind wasn't as sharp as it was anymore. So in early 2011, I saw another doctor who gave me the same treatment - 4 weeks of Doxy - no change.

In 2013-2014 I noticed a steady decline in my mental sharpness, focus/concentration, and my memory started to go to crap. This started becoming a big deal with my job since its so detail oriented and any little mistake makes a huge difference and can lead to getting fired and sued, etc. Then I started to read about neuro lyme cases, and got really scared about the direction I was going mentally so I started to re-seek treatment in August 2014. I also developed bad anxiety at the end of 2013 (definitely brought on by the stress of my job - though I never had physical manifestations of anxiety like that before). I've also had long bouts of depression - but who knows about that one, tons of people without lyme have that as well.

I got a regular labcorp test done by another doctor (which did not test for the co-infections) and also a SPECT brain scan. Based on those, and my symptoms and his exam, Dr. R was confident I had babesia and bartonella (i think) in addition to the lyme. He recommended the Igenex testing but said insurance didn't cover it and it was $600 - so I asked if I could skip it, and he said yes since he was confident I had the three infections based on the other stuff.

I did get a script for Labcorp testing, since I know my insurance will cover that, for babesia and bartonella (though he said they werent very accurate) - is it worth getting now, after already starting the Coartem?

I'm really not looking forward to having a (semi) permanent tube sticking out of my chest. Maybe sounds superficial, but I'm newly single and that's going to make dating a bit more awkward, haha. Does anyone have any thoughts or recommendation on PICC lines or Hickman lines?
Posted 12/13/2014 11:52 AM (GMT 0)
Wow Kbsk!

We have similar stories. I'm just doing orals for now. It's been 3 months and I've had no improvement. I really want to get a PICC. I'm not sure what a Hickman is?

I'm glad you finally have a good doc who will help you. Let's stay in touch and compare notes.

It sounds like you have a good plan in order.

It may take awhile to notice improvements. Even with the PICC. one friend told me 4-5 months to see any good change. She works with THEE dr. C, head of ILads. She's ill with a20 yr old undiagnosed infection. He feels he can get her to 80% better! She has a PICC.
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