IV antibiotics or oral?

Vimzor said...
I went to my old LLMD. He proposed six weeks of IV antibiotics:
Flagyl, Ceftazidim en Doxycycline.

I'm unsure if I want to do this. It would cost € 1100 and it's gonna be a hassle. I do think it would help and oral antibiotics would take longer but it's so much easier and cheaper.

I talked about taking minocycline again and he said that it can build up in your body. Eventually you won't be able to go in the sun anymore. Then he told me about a German woman that died because of that. He kinda scared me. I'm not sure now. He's really bad at dealing with patients...

I think in total, I've taken minocycline for two years and a couple months. Spread out over the years. But I'm not sure if what he said is right. Does minocycline have a cumulative effect in the body, does it build up? Or does your body 'reset' after every period of using it.
This isn't only about your skin being very sensitive to the sun but also tooth staining.

Taking mino and being in the sun is a no-no but once you’re off the mino - you’re fine.
I was very sun sensitive when on doxy but lesser on the mino.
The mino did cause discolouration on my teeth - but after being off it - it eventually resolved.

sounds like he wants the earner of IV to me

red flags to my mind are
scaring you about taking minocycline longer term - emphasising the risks with oral abx

i am not sure there is evidence to back this up
i am pulsing doxy at the moment - for the last several months - and no issues in the sun

well respected doctors like Dr J say they think they can get even the sickest patients well again only on oral abx - he says it just takes the very sickest ones quite a bit longer than if he uses IV - but these people are v v sick - not average lyme sick

I need to clarify, he was talking about developing permanent sun sensitivity. He said I needed to get an UV light and I would see 'waves' ?? on my skin from taking mino in the past.

I think this case study comes close to what he meant. Not the same but similar, about permanent side effects:
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3674755/

Somebody said...
Minocycline-induced hyperpigmentation is associated with long-term use of this drug. Any patient receiving more than 100 grams of minocycline can develop discoloration.4 The pigment deposition is the result of a drug metabolite-protein complex chelated with calcium, or an insoluble minocycline-melanin complex.5 Minocycline hyperpigmentation occurs in 2.4% to 14.8% of patients on chronic treatment, most commonly for acne and rosacea.5 In a study of 700 patients on high-dose long-term minocycline treatment for acne (100 mg daily, 100/200 mg on alternate days, or 200 mg daily for 10.5 months),
...
The patient was taking 100 mg of minocycline orally twice daily for 3 years (total 219 grams) to suppress symptoms of rheumatoid arthritis.

I don't think it's about money. He's an old fart, in his 70s, he's not good with patients, he has a temper & gets defensive very easily. He's a good professor and researcher though. (Can you guess who it is? :p) Some years ago he also scared me about rifampicin, some nurse died from liver failure, and about fecal transplants. Someone died too.
I'm starting to see a pattern here. :p

First time I was on mino, 2014, I was very careful about sun exposure. I once walked on the street with my jacket above my face. :p
Second time, this was 2 years ago, I took it for a year and some months. I didn't care about the sun, I had no problems. But still, I'm very anxious about side effects so now that he told me, it's in my head... At the time I stopped because I started to notice some tooth discoloring.

Regardless about the sun thing, I do think IV would help me faster. But I'm very hesitant.
His main reasoning for proposing IV was that it's better for my gut.

Post Edited (Vimzor) : 9/6/2023 1:26:24 PM (GMT-8)

he sounds a bit up and down - scaring people into taking your advice is still a red flag for me - even if the motive isn't money

i think Rainy and Running Wild both had good results with Bicillin shots taken intra muscularly

very hard to guess in any one individual case Vimzor
treatment response is variable in each person in any case

your LLMD or any other LLMD would be in the best position to guess - as they have seen thousands of cases of oral and maybe hundreds of IV - and know your case also.

from what i have read / heard discussed - if someone is fully bedridden sick and would take maybe 2 years abx to get well again with maybe 6 months to a year of that IV
then maybe it would be 6 months to a year longer if oral only
but in people who are not so sick the difference will likely be less

the other side is the cost - not a small cost for long term IV
another consideration is risk - IV ports - or ongoing IV infusions are not without risk
then there is tolerability
IV could well be better on the gut than oral - but the dose of abx is typically much higher and you still have to go through the herxing either way
and its this herx like reactions that are often the limiting factor in how fast a person can progress through treatment rather than anything else - so one could pay out of pocket for IV only to find you could not tolerate it at the pace you would like and end up going at the pace you could have done via oral

not trying to dissuade you - just laying out the considerations in the round as i would see them