posted
Well I am not sure what to think from my latest LLMD appt. First, he asked me how long I wanted to stay on Doxy ( been on it now for 1 month). I said "shouldn't I stay on it long enough for the spirochete to go through 1 cycle and re-duplicate?" ******And here's where my point of concern comes in: He says "And where did you hear that the spirochete re-duplicates? I've never heard of such a thing?"
So maybe I'm just over-reacting, but shouldn't he know this basic info about Lyme? This was one of the basic things I learned. Please tell me if I'm wrong, I can take it.
Secondly, he thought maybe amoxicillin was what we should try next. Now on this one, I truly don't know about. I thought I had read that this was a no no when treating Lyme. Wasn't this is Bryan Rosner's book as one of the "worst choices"? Again, I could have this wrong..
I feel like the only thing he can do for me is prescribe the antibiotics..he's given me no other advise, reagarding diet, exercise, what to do or not to do. Is this normal for an LLMD to do? Maybe I am expecting to much? He's an infectious disease doctor, by the way if that means anything.
Would love insight into figuring these questions out? This guy just doesn't seem in tune with what Lyme is really all about. Help, Laura
Posts: 232 | From MN | Registered: Jul 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
quote:Maybe I am expecting to much? He's an infectious disease doctor, by the way if that means anything.
You hit the nail on the head! Most Infectious Disease docs (ducks) are clueless about how to really treat Lyme.
They are prone to follow IDSA guidelines, rather than ILADS, which is the gold standard for Lyme treatment.
Out of curiosity, where did you get the name of this so-called LLMD?
I would be looking for a different one if it were me. Go to the Seeking a Doctor Forum for help with that.
Amoxicillin is used to treat Lyme, if the dosage is high enough. Out of curiosity, how much Doxy are you taking a day? You should be on at least 300 mg/day. Many of us take 400 mg/day total, some more.
Most LLMDS will not go switching abx every month, The fact that he asked you what you though he should do next does not sound good to me.
My LLMD will sometimes ask me that, but we've been working together for almost 6 years now, so he knows I'm informed and we share info frequently.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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quote:Originally posted by laura miller: Is this normal for an LLMD to do? Maybe I am expecting to much? He's an infectious disease doctor, by the way if that means anything.
How in the world did you end up in his office!?
No, this is NOT normal for an LLMD!! But he's obviously NOT one!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I agree - time to find a new doc. Look for one in ILADS.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Dear Lymednva, I found him through another LLMD who was so booked they were having new patients go to see this guy. So I guess I took a risk just so I could see somebody without waiting 6 months. At least he got me going on abx. But now I guess I need to move back to the original Dr. who's booked out until Feb. now.
It is so nice to have this sight to get instant feedback for ques. Wow- you & Lymetoo are quick!
Again, shouldn't all LLMD's know spirochetes re-duplicate????? Thanks for listening. Laura
Posts: 232 | From MN | Registered: Jul 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Dear Laura,
High dose amoxicillin has been great to me and Art Doherty who used to run the web page Lots of Links on Lyme went into full remission on it. High dose amoxicillin is known for having very little side effects and being very easy on the GI tract- so it is a common option in Lyme treatment!!!! Doxy is more common though- I don't know whether your doc is good or not- I have never heard the phrase re-duplictae myself- replicate, yes, duplicate, yes, maybe he was being pedantic???? I don't know. But any doc willing to prescribe abx- I wouldn't burn that bridge- sure, check out another doc if you want to, but keep this one on good terms!!! He doesn't sound like a real LLMD but he may be the best in your area!!! I don't know. For years around here we didn't have a real LLMD and either had to drive hours to see one or make do with docs that sound a bit like yours!!!
Take care, Sincerely,
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Well, first of all, not all LLMD's are created equal. My LLMD happens to be fantastic, but unless I ask, he really almost never goes into diet and exercise stuff. He has no supplements on hand and sells nothing, though once he returned from an ILADS conference bustin' with news about this new probiotic, 'Theralac,' and put a bunch in the fridge to sell at cost.
And as much as I'd like to hit most ID ducks over the head with a big stick, some of our finest LLMDs in the country are ID doctors. So let us keep that in mind.
The fact he's giving you 200mg of doxy TWICE a day and fixin' to give you more indicates to me that this is no regular ID duck. So I am willing to concede he may actually be an ILADS doctor, just perhaps not as communicative as some.
My own LLMD, who is a SAINT! -- put me on doxy for a month. Similar dose. I considered killing him, assuming I could drag myself down there. Fortunately, when my month was up, he switched me to very high-dose Amoxicillin plus Probenecid. Not only does this cross the blood-brain barrier in the presence of infection, but it's recommended in the ILADS guidelines, last I looked.
I would personally give that greater weight than Brian Rosner's book, which appears geared mainly toward selling Rife machines.
I am usually so rattled and overwhelmed at my LLMD appointment that I find it helpful to make up a little written list of things I want to ask about. No matter how out-in-left-field the conversation may wander, I mention my list and tell my doctor that he must let me get back to it. They actually kind of like that, as it gives them a little framework also.
I hope things work out for you. Keep asking and posting questions!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Californialyme, Good to know about the Amoxicillin, that restores a little of my faith in him...I always love all your insights in these threads. Laura
Michelle, Advice also appreciated.. so I guess amox. is good. I will look up this "probenecid" for my future. What kind of drug is this? Another abx? Laura
Posts: 232 | From MN | Registered: Jul 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hey Laura!
Actually Probenecid is, oddly enough, a medicine typically used for gout. It's combined with Amox because it keeps the blood levels of Amox significantly higher than with just Amox alone.
Not an antibiotic.
And oddly enough, not a med with any type of side effect I could ever discern!
:-)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Laura,
If you are questioning this doctor, maybe make an appointment with the other LLMD. Continue to get treated by your current doctor until then and make a decision of who you want to work with long-term in February.
Make sure you keep copies of all your test results and a detailed list of medications and dosages so you can give the other doctor a detailed medical history.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Like everyone else said, he doesn't sound like an LLMD to me. Most LLMD's are not infectious disease doctors. I mean, I'm sure there are some out there, but most LLMD's are just LLMD's.
I've been on Amoxicillin since I've started treatment. There's nothing wrong with it. It treats Lyme.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I just started amoxicillin after my first visit with a LLMD. I'm supposed to have 1000mg four times a day, but I'm starting on 500mg to get used to it.
Already I'm having stomach upset and more fatigue. I'm still taking my cumanda/burbur tinctures, but my doc said I could keep that, too.
I'm getting discouraged already. Tell me it's just a herx, and it will get better. Any tips on protoecting the stomach? I take the amoxy with meals.
How long did you take the amoxy before you noticed improvement? How long did you herx?
Inquiring minds want to know.
Thanks, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It sure sounds like your ID doctor is OPEN to treating Lyme! I would tell him about ILADS and suggest he read Dr. B's guidelines and the ILADS guidelines .... maybe we have another LLMD in the making. Once you mention this stuff, you will know for sure whether he really is open or not.
One of my medications is amoxy/probenecid. It's a high dose of Amoxy -- 2500 mg three times per day. I had a peak level test done to be sure there was enough in my bloodstream.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
CherlySue, I had to work up to my current dosage and every time I increased I herxed. It was a constant herx for the first month, then more of a regular herx cycle after that ... except for when I increased the dosage.
Be sure you're taking good probiotics for your gut.
Also, you should be taking Probenecid with it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
The key to the success with amoxy is the dosage. I think I was on 7 or 8 grams a day, and llmd did a peak and trough test to determine blood levels.
I know it has worked well for many...did not do to much for me. But that's one of the things you need to know; what works for one person really well, may not do anything for someone else.
If this ID is giving you too small a dose, it may not work. As I remember I worked up slowly to the 7+ grams a day.
VERY imprtant that you take probiotics while taking any antibiotics to avoid bowel upsets and possible yeast infection.
Why don't you consider going to the Seeking A Doctor forum and post to ask for a real LLMD somewhere near you. Ask for a PM (private message) because we don't mention doctors names here. That way, if this guy doesn't pan out you can make an appointment with LLMD.
Good luck!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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I truly don't know about. I thought I had read that this was a no no when treating Lyme. Wasn't this is Bryan Rosner's book as one of the "worst choices"? Again, I could have this wrong..
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