How long before you decide to alter treatment if its not working

My doc had me on doxy for about 7 weeks with no improvement so he took me off and I'm currently on a 2 week break. Will start up next week with something new. It's a tough call. I know it can take a while to start seeing progress but sometimes our bodies just won't respond to certain treatments and it's time to give something else a try. Can you email your doc and ask what they think?

I'm thinking you might want to treat a co-infection and see what happens.

What antibiotics have you been on for the 3 1/2 months?

Good that you're seeing your LLMD in February to discuss this.

Switching after one month is premature IMO. It can take longer than that to get results...But, some LLMD's do switch that often. I have had results after the one month in many instances...

Borrelia is Lyme. Bartonella and Babesia are two co-infections.

Do not rely on the Igenex test. You most likely DO have a co-infection - testing is only a back-up for a clinical diagnosis.
Many,many false negative co-infection tests via Igenex.

I think a discussion with your LLMD about trying an antibiotic specifically for Bartonella would be a good idea.

I see you have levofloxin in your nebulizer? i'm not familiar with that...
(I know the medication, but never heard of it in a nebulizer)

Not sure if I'd want to do that treatment....unless the risks that come with the Fluoroquinolones aren't so great when it's only 100 mg...

The fluoroquinolones are sometimes prescribed for bartonella treatment...but some LLMD's won't use them because of the risks. They come with a black box warning - for risk of tendon rupture...and more recently risk of peripheral neuropathy that can be permanent.

The neuropathy one would worry me because I already have that...so I wouldn't know if it got worse - because of the side effect of the medication...or if I was herxing...

I don't know if that lower dosage in the nebulizer comes with the same risks...you might want to discuss with your Dr.

I don't know about the synthetic vs. natural.

If your dr. wants you to have an antibiotic in the nebulizer...maybe have a discussion and ask if there are other effective antibiotic choices for this...

1000Daisies:



"We knew we were going in for a tough, long battle, but we honestly felt (based on conversation with our functional medicine LLMD) that maybe it would be 3-4 years... but it ended up being twice that. "

Your family has been treating for 6 years now?

Wow, that is a long haul for your family.

BUT, what I take away from this is that even if you haven't been healed in a year...or two...do not give up...we can all heal.


So, do you think it was finding the right treatment for your son...or just the length of treatment alone is what worked ...just beating down the infection and continuing to lower the bacteria load...

I hesitate to answer since I've been at this a long time which in itself can be discouraging. The first time I started treatment back in 2006 it took 4 months to see any real progress. I was on aggressive antibiotic therapy, including iv followed by oral antibiotics. For nine months I hit the Lyme hard and got my life back. I moved to CO and after some months found a LLDO and continued adding a four month regime to hit Cpn (stomach bottomed out, but I was doing great!). I was on sntiotics a long time, however.

I finally weaned off. From time I would get a sore joint and push the Lyme back for a month to 6 weeks. I was doing great!

Fast forward a few year and as happens with women things "change" My immunine system no longer suppressed it and with one virus, all Lyme broke loose.
I went back on the antibiotic protocol that formally worked. I did the ispot Lyme test and after 6 months took the test a again - no change. I felt better but I know you can adjust and get used to the new normal not realizing you're really not that much better.
I stopped the antibiotics and went herbal and some other alternative stuff including ultra violet light blood irradiation.

I say all that to say this. If you've had this a while, undiagnosed, it may take a good long time to see/feel progress. Also we are great at getting used to a new normal and overcoming when we've made very little progress. Decide on your real indicators.

Four months without any progress, I'd look into switching this up. But if you've had this a while, bank on the long haul but don't be afraid to speak up if after a few months you're not seeing progress.

The herbal protocol has been very helpful for me. I now adding herbs to hit CPn again.

Post Edited (Purple Tulip) : 1/19/2017 7:36:41 AM (GMT-7)

The corticosteroid is Budesonide, which is Pulmacort.

I'm also struggling with eating right because I keep cheating eating gluten and dairy. I was strict on this at first but one cheat day lead to another and now I cheat often so I really need to try stopping again with this stuff...