Lyme community says we all have it

[cigana]

Maybe so, but an IV antibiotic which is often used for Lyme and gets into the CNS was very helpful for me. I had a textbook Hermxheimer reaction, which should only happen in response to very specific types of bacteria - only spirochetes which produce toxins as they die off.

My personal experience strongly suggests a long-term Lyme infection, and it is this far strongly suggesting that 6 weeks of IV antibiotics has a big impact on Lyme and ME symptoms. For the past 5 days I have been incredibly active by my usual standards. I got a little sore the first couple days, but nothing resembling a crash, and now I'm able to do many household chores every day, without struggling at all - chores I haven't been able to safely do for a couple years.

May I ask which tests you were positive on?
Also, did you try oral antibiotics (and if so, which ones and for how long)? And what was the reason you went on IV abx (as opposed to oral)?

Thanks. I am asking because I am positive for Lyme by PCR but around 9 months of oral abx has produced not effect in me. Yours is the first case I've found of an improvement!

 

[Sushi]

I am positive for Lyme by PCR but around 9 months of oral abx has produced not effect in me. Yours is the first case I've found of an improvement!

I was positive for Bartonella by PCR but other tests suggest that I have Borrelia too. I am taking oral abx plus herbals and have definite improvements in certain areas (cardiac symptoms, occasional day of feeling "well") though the side-effects of meds and herx reactions make other symptoms hard to gauge.

Sushi

 

[Valentijn]

May I ask which tests you were positive on?

I was positive on the Elispot-LTT and had various inflammatory markers elevated.

Also, did you try oral antibiotics (and if so, which ones and for how long)? And what was the reason you went on IV abx (as opposed to oral)?

I'm currently on 200mg doxycycline and 500mg clarithromycin, both oral.

Generally a shorter round of IV antibiotics is needed to do the same job as oral antibiotics, the gut gets spared to a much greater degree, and the IV antibiotics should be getting better penetration into the rest of the body.

Thanks. I am asking because I am positive for Lyme by PCR but around 9 months of oral abx has produced not effect in me. Yours is the first case I've found of an improvement!

Which antibiotics have you been on, and how long for each?

 

[cigana]

I was positive on the Elispot-LTT and had various inflammatory markers elevated.

I'm currently on 200mg doxycycline and 500mg clarithromycin, both oral.

Generally a shorter round of IV antibiotics is needed to do the same job as oral antibiotics, the gut gets spared to a much greater degree, and the IV antibiotics should be getting better penetration into the rest of the body.

Which antibiotics have you been on, and how long for each?

So you didn't decide to do the IV because the orals weren't working?

I was on 200mg doxycycline the whole time (around 9 months in total, split into separate 6month then 3 month period with a break of a couple of months, say).
During that time I spent about 2 months each (approximately) on lymecycline, monocycline 100-200mg, ketek 400mg. I also had 2 weeks of amoxicillin 2000mg. There were a couple of others I've forgotten the names of right now (but I will try to find out if you would really like to know).
EDIT: lots of azithromycin too.

 

[Valentijn]

So you didn't decide to do the IV because the orals weren't working?

No, IV seems to be the preferred form for long-term and/or neurological lyme infection. A lot of people can't manage it however, due to cost and/or local lack of IV options, and orals then become the only option.

So I did 6 weeks of IV rocephin, then 6 weeks of IV azithromycin, and now have been on 200mg oral doxycycline and 500mg oral clarithromycin for 4 months. I'm still getting daily periods of hypotension and fevers (herxheimer reaction to Lyme dying), so the doctor will probably keep me on them for at least another two months after we seem him again next week.