I found a LLMD (highly recommended here) and will be flying to see him in August. I am a little worried though because he told me to take the doxy for 12 days that my PCP gave me and then switch to clarithromycin 250mg twice a day for 15 days. I am worried because on Dr. B's guidelines, it says that drug has poor results when administered orally. Should I find another LLMD?
Sometimes, I wish I could trust somebody and stop researching everything so much. It is enough to drive you crazy!
Thanks, Jen
Posted by seekhelp (Member # 15067) on :
Dose seems too small to me (usually 1,000 mg). Also, Biaxin usually is taken with Plaquenil to get better absorption into tissues IF Dr. B is right. Many LLMDs could care less about Dr. B's guidelines and don't seem to see him as an authority on Lyme. This makes no sense to me as he's the pioneer/guru. He is ILADS. How can you go against the big dog?
Posted by MariaA (Member # 9128) on :
is he doing this in order to run a blood test- it's called an 'antibiotic challenge' around here- do you have a positive test yet?
Posted by Lymeorsomething (Member # 16359) on :
He probably wants to see you first before establishing a heavier protocol...
Posted by gemofnj (Member # 15551) on :
i agree with lyme. sometimes doctors start treatment out low or mild in order to 'ramp up' to keep herxing down to a minimum.
Posted by jennie46 (Member # 20953) on :
quote:Originally posted by MariaA: is he doing this in order to run a blood test- it's called an 'antibiotic challenge' around here- do you have a positive test yet?
I don't know whether he is doing this for a blood test or not. He did talk to me on the phone and wanted to make sure I was on anbx now because I am only 6 weeks past tick bite. I don't want to call and let him know I am questioning him. When I see him, I will have been on doxy 200mg twice a day for 13 days & then clarithromycin 250mg twice a day for 15 days. What should I do?
I don't have my test results back from my PCP, but I do know they were not sent to Igenex lab. Everybody I know in my area that has lyme has tested negative because we have no LLMDs here.
Sorry to be so lengthy.
Thanks, Jen
Posted by radfaraf (Member # 11909) on :
I had amazing results on 250mg twice a day, but stopped because it also gave me complete inability to sleep.
Posted by lemonsnotlymes (Member # 19926) on :
My LLMD had me on a low dose of Biaxin for a couple of weeks. Then, we bumped it up.
Then after that we added in the plaquenil.
My llmd is not a big believer in having huge flares. She ramps everything up, slowly over time.
My own testimony for right now is that it is working. Of course, in conjunction with other things she has me doing.
Even as she introduced the small dose biaxin my hips and knees began to be stiff and ache really badly for a few days. Then it went away. Until we ramped up again.
I think it is great that your new doc is going to let you do this. Honestly, to do more than that without examining you would be irresponsible.
Regarding Dr. B's treatment protocol vs. other LLMD's. IMO, I think a good LLMD follows Dr. B's guidelines.
However, a REALLY good LLMD continues to be a researcher and practice medicine and may even "discover" other things that work for their patients.
That's the kind of doc I want and need. Fortunately, I think that is the type of doc I have.
Good luck!
Posted by jennie46 (Member # 20953) on :
quote:Originally posted by radfaraf: I had amazing results on 250mg twice a day, but stopped because it also gave me complete inability to sleep.
Wow! This is promising, except the no-sleeping part...I have trouble with that on a good day with no meds! This LLMD stated he thinks "doxy is good, but there are better choices."
Thanks, Jen
Posted by lemonsnotlymes (Member # 19926) on :
Jen, I should have added I was also on Amoxicillin at the same time. But we started that out slowly first, too.
Posted by jennie46 (Member # 20953) on :
My main concern is this....I had the bite with rash 6 weeks ago. I feel it is critical right now to stop whatever is happening in there, you know? Will the clarithromycin do that? I just don't want this to keep getting worse.
I only had flu symptoms for a few days, started doxy and symptoms were gone within 3 days. My only symptom now is fatigue. Right now, LLMD says I am looking at 6 months on ANTX and then should be cured. I am so blessed and fortunate, I know. I am still thanking God that I figured out what was wrong with myself before things got worse.
Jen
Posted by TF (Member # 14183) on :
Jennie, you have not even had an appt with this lyme doc yet and he is giving you advice and maybe a prescription (?) for the Biaxin? If so, that is much more than most lyme docs would do.
It sounds like he doesn't want you off of antibiotics a single day since this is an early bite. That is an outstanding approach and shows a lot of concern for you by the doc.
Once he sees you, he will begin his normal treatment. This is what he is advising you in the interim. A lower dose of an antibiotic should at least keep the bacteria from multiplying (bateriostatic dose) which is wonderful until you can see the doc.
Even getting to talk to the doc on the phone prior to the first appointment is something that does not often happen, in my experience. So, I think it all adds up to a lyme doc not wanting to miss the chance to begin treating an early bite ASAP.
Once you have your appt, he should lay out his treatment plan. Then, you will have something to evaluate.
This sounds like a good stop-gap measure to me and I think you are fortunate to have gotten this much help prior to an appt with the doc.
Posted by jennie46 (Member # 20953) on :
quote:Originally posted by TF: Jennie, you have not even had an appt with this lyme doc yet and he is giving you advice and maybe a prescription (?) for the Biaxin? If so, that is much more than most lyme docs would do.
It sounds like he doesn't want you off of antibiotics a single day since this is an early bite. That is an outstanding approach and shows a lot of concern for you by the doc.
Once he sees you, he will begin his normal treatment. This is what he is advising you in the interim. A lower dose of an antibiotic should at least keep the bacteria from multiplying (bateriostatic dose) which is wonderful until you can see the doc.
Even getting to talk to the doc on the phone prior to the first appointment is something that does not often happen, in my experience. So, I think it all adds up to a lyme doc not wanting to miss the chance to begin treating an early bite ASAP.
Once you have your appt, he should lay out his treatment plan. Then, you will have something to evaluate.
This sounds like a good stop-gap measure to me and I think you are fortunate to have gotten this much help prior to an appt with the doc.
I completely agree. I think he will be wonderful. I am just scared and freaking now.
Actually, my PCP agreed to prescribe the meds. The LLMD just told me the PCP did not prescribe a high enough dosage of the doxy and told me to ask her to up it and then when finished to ask to start on clarithromycin until I see him.
Ok, I feel like I am on my way!
Thanks to all, Jen
Posted by sutherngrl (Member # 16270) on :
I did Biaxin solo. I have done almost all my antibiotics solo. I trust my LLMD, since he has 30 years of research under his belt and I know people that he has cured.
Some people have no choice but to do small doses because they can't handle large dosing. I believe small doses DO work. I have seen it. It is not as taxing on the body, not as much chemicals to process, etc.
Even doctors that are members of ILADS, don't always follow the dosing guidelines to a tee, because they have learned from their own practice what does and can work.
No 2 doctors are alike, and in my opinion, those that follow those guidelines to the tee, are doing just that, following "guidelines", rather than going the extra mile to do their own research.
I like my LLMD because he researches and he treats people according to their individual needs, rather than just following guidelines. I like that my doctor thinks outside the box.
Lymenet is a good place for support, but you need to trust your doctor and not let what others say is the "proper" dose for you freak you out. Only your doctor knows that depending on you as an individual.
We are not robots. We are all so VERY different. Just hope your doctor treats based on you as an individual and not the exact same as he treats every Tom, Dick and Harry. That is not a good sign in my opinion.
Posted by btmb03 (Member # 18394) on :
Well put sutherngrl, I'm coming to the same conclusions as you.
jennie46 - you are very lucky to get treatment so quickly...chances are great that you will completely recover.
After almost a decade of misdiagnosis and symptom severity correlating with a high level of disability I can only can agree wtih the above post. We are all different and your doc will keep in mind many factors when treating you. Good luck!
Posted by gemofnj (Member # 15551) on :
ditto & ditto
I was also treated on solo abx with good results. you have to trust in your doctor and follow his recommendations.
dont forget to have your questions written down about everything you want to discuss
may i suggest that you write down all of your symptoms in a journal. this will be helpful in tracking your improvement, which abx worked best for you, and also new symptoms which present after abx
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