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LLMD said I could have drug resistant Bartonella

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Posted 3/7/2015 4:21 AM (GMT 0)
I was already down, but not what I needed to hear this week! UGH.

How can anyone could say that definitively? It's ridiculous.

Thinking about switching up LLMDs as I haven't tried much but Biaxin / Rifampin / Tinidazole combo for almost a year. Plateaued at the moment.

Not much a question just a little aggravated and venting.

I am not giving up either way. Lots of different med / herbal combos are out there.
Posted 3/7/2015 4:43 AM (GMT 0)
Jackie - in the year of treatment have you had symptoms resolve at all?

Maybe changing the combo would help. Some Dr.s treat with Bactrim combined with a macrolide.

Is it for sure bart? Are they clearly bart symptoms?

If he doesn't offer you something - a change to a different Dr might be in order.

Keep fighting!
Posted 3/7/2015 6:50 AM (GMT 0)
Yes it's clearly bart or a BLO still left.

Rifampin knocked out 30% of my Bart symptoms in the first 4 months and that was it. Once upon a time I had every single bart symptom on the master list. The Bart rash is also still hanging around.

I stopped the Rifampin combo for a short period and I got a complete relapse in 12 days. Clearly the meds are suppressing the infection.

But 3 rounds of Artmenisin cleared up my Babesia completely. I stopped taking it and haven't had a re-occurrence of Babs at all.

Right now I have normal c3a but very high c4a leaving no doubt of an existing infection and I also have high TGF B1 ( inflammation ). My oxygen flow to brain is about 80% only still. Yuck.

I am really surprised my LLMD didn't mix up meds some. He is a big believer of 6 month min on rifampin.

As anyone can image I really have a hard time taking anything that causes brain inflammation and neck swelling herxes. I think it is my biggest remaining hurdle. Just can't do it even with heavy detox.
Posted 3/7/2015 4:38 PM (GMT 0)
Jackie,

Here's an interesting article on Bart treatment. I could see staying on the Rifampin if it were working, but finding the right meds is key. Sometimes, a med does not help one person when it helps another. I'm sorry you're struggling. Good luck with your LLMD!

http://lymemd.blogspot.com/2009/07/bartonella-re-visited.html
Posted 3/7/2015 5:03 PM (GMT 0)
If you are willing to use herbs, why not add in an herbal protocol to target Bart specifically?

While I believe your doc should have said that he's the one stumped, at least he's not 'leading you on' and telling to you just give it more time.
Posted 3/8/2015 12:23 AM (GMT 0)
So you have been on the same meds for a whole year? Wow. My Dr switched things up every couple of weeks (not necessariy switching meds every couple of weeks, but doses and such). Whenever I plateaued she either increased something or added something. Any chance you can get a second opinion??
Posted 3/8/2015 2:18 AM (GMT 0)
@LD
Interesting article. I follow LymeMD blog posts a lot. Very transparent about his thought process which is really helpful.

@Traveler
I tried herbs specifically for Bart. The herxes caused encephalopathy / meningitis that was unbearable. I ramped up detox and I tried a much lesser herb dose than recommended and only once a week and I still couldn't do it. LLMD told me to stop. He was very concerned about brain damage.

I truly think my LLMD was being honest in his statement on Bartonella. It's always a possibility of drug resistance, but that impossible to say for sure. The statement was just poor tact that's all. It's a kick when you are down.

Haven't been on any of those other Bart meds or an IV so it definitely is a possibility. I am thinking minocycline combo is a possibility because it hits brain infections effectively for a lot.
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