Abx for life

I hope you are wrong about it... I'm on antibiotics for 5.months and not feeling like it's really working. Man I hate this disease.

Rikky - Have you thought about a persister medication? Dapsone or Daptomycin? I was just reading though notes from a recent lyme conference and there was a study of 60 people with chronic lyme and all but 4 got to remission with Daptomycin. The last 4 did another course of the daptomycin and 2 of the 4 achieved remission.

Here's the excerpt and it was Dr. B who spoke on it:
In 60 patients with prior Lyme treatment that still had symptoms, Daptomycin was used with other antibiotics and all but four had a successful outcome. Of the four, a second round was given, and all but two were then in remission.

www.betterhealthguy.com/tickfactor

Rikky1, et al.

Unfortunately, each of us has a unique case. 18 mos. on abx isn't entirely unusual. It's certainly not desirable or easy but it is more common than not. I've been on IV Rocephin 2 yrs and on IV Vanco for 9 months... While I'm 85% better, I'm still stirring up new pockets of the infection and probably have another 3 months on them. But I've made significant progress.

I'm also on herbal antimicrobials, as I think nearly everyone on abx should also be for more comprehensive coverage so that is also something to investigate if you are using only abx.

You might investigate higher doses and as others have suggested, ensure that you're covering persister forms.

-p

kirky i have no heavy metals issues per recent testing which is a bonus. i personally think i'm dealing primarily with a very persistent bartonella infection its well entrenched in my chest area. i also don't detox well that i know from experience so this adds another element to the persistent inflammation causing my symptoms.

i was going to pick up a few herbals to take alongside my abx but don't want to introduce too much at one time. was going to start up knotweed and sida acuta. thing with herbals is there are literally dozens of them you could take and its hard to gauge what is benefitting you.

Rikky1 said...
thing with herbals is there are literally dozens of them you could take and its hard to gauge what is benefitting you.

And for this reason we take one herb at a time and do it at a very low dose to see how it affects us.

I did my herbs one at a time until I got up to my max of the dose before I added in another herb. This way I had complete control and understanding of that herb before I ever added in another one.

I also titrated up a little more quickly than others because I was only upping one herb.

And with my brain fog it was so much easier to concentrate on one herb at a time, while knowing that the others I was taking were fine for me, and at their final dosage.

Also, wanted to ask, Rikky. Have you gotten to symptom free ? (when you take your one week break)

Artermix, that's what Dr. Horowitz says...yes.

But, so many symptoms overlap, how do you know for sure you don't have a babesia symptom?

but, testing negative....that doesn't mean you don't have it.

well you have symptoms...or you wouldn't be even questioning babesia.

The symptoms may not be your classic babesia symptoms...

You do have symptoms - that's why you're questioning.

When you have Lyme you usually have one or more coinfections.

You would trial a treatment of one of the coinfections and gauge the response - either herxing or improvement. You wouldn't stay on the treatment indefinitely if you didn't get a response.

Usually if you have Lyme symptoms, at least one or more of them overlap with coinfections.

Sweats are a typical Babesia symptom, but others have it with bartonella...

Girlie:
i've never had a single day where i was symptom free. the 1 week break was to give my body a rest and to see what symptoms rear their ugly heads the most. since some symptoms got much stronger within a week period i'm thinking we're dealing with bart and or babs. when i did treat babs i did get some reaction early on but its almost non-existent now when i take babesia specific stuff.

i aggressively went after babesia and lyme for the first year of treatment only to be tested by igenex and i still have both present in my blood :( starting this year have been focusing on bartonella already been through rifampin and bactrim and will be starting rifabutin next week after ramping up on minocycline.

i was just pulsing my last regimen for a few months (biaxin/bactrim M-Th, tinidazole F-Su) but no days where i didn't take anything.

if i had to hazard a guess bartonella is my primary problem with babesia occasionally popping its head up. where lyme fits in i don't know i might not have any lyme symptoms i sure don't see any monthly or any other patterns of symptoms.

Well lets see ....women go through peri-menopause and sweats during these times are normal. Hormonal changes. I do not have sweats all the times. I had these before lyme. If I tell my LLMD I think I have babesia or bartonella for which I was tested (already asked him too) and I do not have symptoms he is going to ask me on what basis? He would not even give me a clinical diagnosis.

You are suggesting that is highly unlikely that I only have lyme disease and I must have a co-infection because most people do. Most people is not a quantifiable value. Is it 90%...99%??.....and if so, are you excluding that I could be the percentage I do not have it? Why so?

I cannot prescribe me abx...I would if I could write my own prescription and do what other MD have done. Cannot do that, realistically. I just said I was tested for it and there was no positive test or symptoms. Not sure if I am writing it correctly.

But you suggest I treat with a broad spectrum just in case. What is the use to have an LLMD?