Maybe you should get another opinion as Jackie suggested. I belong to a bunch of Lyme support groups on FB and so have heard the higher dosage from everyone there as well as my own experience.
Good luck!
Lyme is an area of medicine still tripping over its own feet. There is no one way to diagnose and treat it, so there are often differences among docs and various approaches on what tests to use, what meds to use, how to dose them, and how long to take them.
In short: Lyme is a field that is still uncertain. You could tell your doc what you have read about dosing and ask his views; then based on his answers, you can decide whether to quietly go find a new doc.
Or you can go find a new doc and ask for a second opinion on the treatment being given to you by Doc #1, tho docs don't like to criticize other docs, so it would perhaps be better to frame the question to Doc #2 in a gentle way: "I am being treated for X infection with Y medications on Z schedule. Things I read make me think that perhaps there are other ways. What would your approach be?"
Docs don't like to criticize other docs (professional courtesy and all that), but from the response you get, you could likely tell whether Doc#2 disagrees with Doc#1 and maybe even why. You might say something like, "I am not criticizing Doc#1, just trying to understand if this approach is the best one for me. I would appreciate your straightforward views."
That's what I would do, but you may have a different way that works just as well or even better. Someone should write a book titled "Lyme: What A Mess." That pretty much sums it up.
Or -- here's a wild idea: maybe the pharmacist read the prescription order wrong? Dunno. But don't be afraid to question what's being told to you, just do it gently so they don't clam up on you.
I'm a little confused why my doc did this. He came very recommended. Everywhere I read says the same info about at least 200mg twice a day with another abx.
Did anyone else just start off on doxy alone?
Most of the people I know got 200 mg twice a day. Along with pulsing a cyst buster since Lyme can go into cyst format. When I first started I pulsed flagyl.
.... [continued from above]
So that says there are different way to treat, both in kind of meds taken and in dosage. If it were I, I would definitely ask about the dosage:
"Dr, I was doing some reading and saw that 200 miligrams of doxycycline is at the bottom of the scale. Can it be given in higher doses? I'm so ready to get well!" Then smile gently and see what the doc says.
Below is copied from Dr Burrascano's treatment guidelines for Lyme (posted on the ILADS website), including an entry on doxycycline [aka doxy] dosage:
"Adults: 200 mg bid [meaning twice a day] with food; doses of up to 600 mg daily are often needed, as doxycycline is only effective at high blood levels." So perhaps your doc's doses are on the light side -- I'd ask him, but sometimes docs get huffy. I'd ask him anyway. It's your health we're talking about. 200mg of doxy twice a day sounds a lot like the nonLLMD standard dose. Others here should chime in with comments too.
(Separately, I note that Dr B ["Burrascano" is too long to keep typing over and over] does not think much of azithromycin [aka Zithromax] [see below], but my Lyme doc treated me with it, quite successfully, along with another antibiotic. So there is not only one way to do things. Lyme is still a developing area of medicine.)
---------------- from 'Burrascano's Guidelines' for treating Lyme: ----------------
Adults: 200 mg bid [twice a day] with food; doses of up to 600 mg daily are often needed, as doxycycline is only effective at high blood levels. Not for children or in pregnancy. If levels are too low at tolerated doses, give parenterally or change to another drug.
www.ilads.org/lyme/treatment-guideline.php [are here:]
ANTIBIOTIC CHOICES AND DOSES -- ORAL THERAPY [meaning taken by mouth, not through shots]:
Always check blood levels when using agents marked with an *, and adjust dose to achieve a peak level above ten and a trough greater than three. Because of this, the doses listed below may have to be raised. Consider Doxycycline first in early Lyme due to concern for Ehrlichia co-infections.
*Amoxicillin -- Adults: 1g q8h plus probenecid 500mg q8h; doses up to 6 grams daily are often needed. Pregnancy: 1g q6h and adjust. Children: 50 mg/kg/day divided into q8h doses.
===> *Doxycycline -- Adults: 200 mg bid with food; doses of up to 600 mg daily are often needed, as doxycycline is only effective at high blood levels. Not for children or in pregnancy. If levels are too low at tolerated doses, give parenterally or change to another drug.
*Cefuroxime axetil -- Oral alternative that may be effective in amoxicillin and doxycycline failures. Useful in EM rashes co-infected with common skin pathogens. Adults and pregnancy: 1g q12h and adjust. Children: 125 to 500 mg q12h based on weight.
Tetracycline -- Adults only, and not in pregnancy. 500 mg tid to qid
Erythromycin -- Poor response and not recommended.
Azithromycin --
--Adults: 500 to 1200 mg/d. Adolescents: 250 to 500 mg/d
--Add hydroxychloroquine, 200-400 mg/d, or amantadine 100-200 mg/d
--Cannot be used in pregnancy or in younger children. Overall, poor results when administered orally
Clarithromycin --
-- Adults: 250 to 500 mg q6h plus hydroxychloroquine, 200-400 mg/d,
or amantadine 100-200 mg/d.
-- Cannot be used in pregnancy or in younger children.
-- Clinically more effective than azithromycin
Telithromycin -- Adolescents and adults: 800 mg once daily
-- Do not need to use amantadine or hydroxychloroquine
-- So far, the most effective drug of this class, and possibly the best oral agent if tolerated.
-- Expect strong and quite prolonged Herxheimer reactions.
-- Must watch for drug interactions (CYP3A-4 inhibitor), check the QTc interval, and monitor liver enzymes. Not to be used in pregnancy.
*Augmentin -- Standard Augmentin cannot exceed three tablets daily due to the clavulanate, thus is given with amoxicillin, so that the total dose of the amoxicillin component is as listed above for amoxicillin. This combination can be effective when Bb beta lactamase is felt to be significant.
*Augmentin XR 1000 -- This is a time-release formulation and thus is a better choice than standard Augmentin. Dose -- 1000 mg q 8 h, to 2000 mg q 12 h based on blood levels.
* Chloramphenicol -- Not recommended, as not proven and potentially toxic.
* Metronidazole -- 500 to 1500 mg daily in divided doses. Non-pregnant adults only.
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