Is it normal to keep taking the same antibiotics at the same dosage (ex. 300 mg doxy a day) for four to six months? I have read varied reports. Some say switch it up or combine, while others say stay on the same abx, if well tolerated, until you reach a plateau, then switch it up. Any thoughts, or what has worked for any of you in the past? thank you.
What are you taking it for? In general yes you usually stay on the same dose for a while but it can depend on how well the antibiotic is working and if they think it is not high enough they could switch. I saw your other post regarding the pain your hips etc.
Meggy, when I lived in Texas, in a town where they don't believe in Lyme, I was able to get myself on Doxy for 6 mos only because it is suppose to clear skin conditions, which I had. I was on only 200mg a day and that low dose actually helped me. I had herxing like mad but over all it did help me. My LLMD now in FL says that if I feel I am not getting better with a certain antibiotic, if there is no change going on, then we can change the meds, I am on a rotation protocol, so I guess it all depends on your doctor and if you are showing any improvements (which means you get worse before getting better). When I compare myself to last year in Texas it is an amazing change for me for the better.
Are you on a combination or just Doxy? My LLMD doesn't use Doxy as much anymore. I think it's because of side effects and because Lyme researcher Eva Sapi showed that in a test tube, Doxy triggered many of the spirochetes to form cysts that are antibiotic resistant. My doc started me on azithromycin and then about 6 weeks later, I started Bicillin LA shots. I had gallbladder pain, so Rocephin wasn't a good choice at that point. (I asked to be more aggressive so I could recover faster.) Most of my doc's late stage patients do 2 or 3 different oral medications for 3 months and then he starts them on IV, usually Rocephin. Not everybody needs IV or shots, though.
When Doxy is taken with Flagyl or Tindamax, the combo is very effective, but many docs won't give one of these cyst busters until later in treatment because they are more difficult to tolerate and can cause painful herxes. I also think Tindamax is really expensive and some insurance plans won't cover it.
My doc and PA use combinations and change them based on tolerance, level of improvement, and other factors. Everybody is different I have Lyme and Bart, and a friend going to the same doc has Lyme, Bart, and Babesia, and our protocols have been very different. There is no single answer for the best Lyme treatment. It is all about you and our doctor.
However, if you plateau and your doctor doesn't know what to do, then it is time to find another doctor. You could always ask "What If?" questions. Like, What if I am improving too slowly? Or What if I plateau? What drug or combo would we do next? I personally will not go back do a doctor who will not answer at least a couple of questions like this. I am a planner and I like to know what is coming up and what the possibilities are. Of course this can set me up for unrealistic expectations at times!
I think it is complicated--as is this whole mess. I mean, I'm on something like 3500mg Amoxicillin and 625 Azith plus probenicid to up the blood levels daily. And my diagnosis is partly clinical and partly based on protein markers and cytokine activity detected--all my antigen and Western blots were "negative" though a few years back I had a positive antigen test that they poo pooed away.
So I'm on the ABX and not sure what to "look for" in reaction, generally feel awful much of the time, and hoping some morning to awaken and just go "hey--wow, I feel--normal today!!!" Alas, not as yet. But my LLMD says that if there's no "change" at the end of this next 6 week cycle we may switch to rifampin and azith and see how that goes.
I hate the "let's see if this works" method, but nothing else has worked in the past 8 months, so I guess we'll go with it for now. It seems to me, with my microbiology background, that staying on the same drug and dose for more than 3 months would lead to resistance and that a varied/staggered approach would be more appropriate (switching between protocols). But I'm not an MD and clearly Lyme has us all stumped so--everyone else's guess is as good as mine I'd say.
So, I guess no real help from me--sorry--but I feel your pain, literally and figuratively. It is concerning to be on meds for so long, and yet, with no other answers, what in the world are we to do?
sorry I didn't know you had Lyme because I answered from my home page and it doesn't say on that page. But the dosage does depend on each case and your doctor. Usually they change antibiotics more than they change dosage. As others here have said.
There is so much that is still being figured out about Lyme that there is no 'standard' treatment. Different docs take different approaches, and if you are uncomfortable with your progress or with your doc, then change docs.
However, a part of what you are experiencing has happened to all of us here: the shock of finding out that the world of medicine is all over the place when it comes to Lyme. It will take time (years, if not decades) to finally nail it down.
It seems from your message that you're only on doxy, is that right?
As far as I understand it, this is usually only used when they catch Lyme right away (withint 6 weeks max of the bit) and they give it for 2 months.
I've you've got disseminated lyme, then the ILADS docs always give you at least 2 abx or more.
My doc reported tome that they are now tending to realise that you get best reults by coming at it with a spedgehammer and so they put patients right away on a cocktail of lots of abx, often 4 or so. Of course this means you need a doctor who will be proactive in helping you through the inital herx and who can help you with detoxing issues, does frequent liver and kidney monitoring etc etc.
Doxy alone drives lyme into cysts so at the very least you need to team it with artemisia as a cyst buster.
All that I have said is what my doc has reported to me and of course I am not a doctor myself so you would need to check everythingI am saying... but I definitely think you should be asking about this.
Have you read the Ilads and Burrascano treatment guidelines on ilads.org?
Definitely download those as a starting point/talking point with your doctor.
Bear in mind some of Burrascano's doc (the abx comments) has now been refined and modified by new research, so some of it is now regarded as outdated.
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