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Originally posted by thomasx:
And, how long would the treatment last on average?

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Personally, I would want to take 6-8 weeks of it for a new bite.

But non-LLMD's will usually prescribe 2-3 wks of it [if that] and then the patient is destined to relapse in time.
 

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Posted by thomasx (Member # 13431) on :
 
6-8 weeks. That's what I figured. How about if your bite was 13 months ago? And how does one know when to stop?
 

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Posted by sixgoofykids (Member # 11141) on :
 
Then you would need more than 6-8 weeks .... you would treat until symptom-free for two months. You would also want to treat any coinfections.
 

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Posted by Michelle M (Member # 7200) on :
 
Hi Thomas.

Your doc's not an LLMD. You're probably going to have to argue with him to get him to sign for an IGeneX blot.

Then, unless it's "CDC positive," you'll have to argue for treatment at all.

Then, if you're lucky and get treatment, you'll get HIS idea of treatment, which will be as above -- a few weeks (maybe) of 200 mg a day of doxycycline.

Not enough.

200 mg a day is what's called "bacteriostatic." That means it discourages the bacteria from reproducing.

What you want is 400 mg a day. That's called "bacteriocidal." That means it KILLS them. Kind of like most things that end in '-cidal.'

When you go on doxy, you're likely to feel like a truck hit you. Your non-lyme literate doctor may foolishly tell you you're allergic to it, not recognizing a herx reaction.

But that's not all.

Most people unlucky enough to have lyme also have a co-infection or two tossed in for good measure. Chances are good your doc won't even have thought of this or if so, he will think it's "rare." NOT.

Treating for an inadequate length of time, or failing to treat a co-infection like babesia, will send you back to square one. Really. I have a feeling we will soon be seeing you in our "Seeking a Doctor" column. You can try and work with him but please brace yourself -- doctors do NOT like patients who educate themselves about lyme. And that is what you are doing. And you have to!!

I think there is an LLMD in your future.

Good luck!!

Michelle
 

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Posted by thomasx (Member # 13431) on :
 
Thanks Michelle. Aren't any cases of Lyme simply treated and cured?
 

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Posted by Michelle M (Member # 7200) on :
 
Good question, Thomas!

YES!!

If you're really, really lucky and you happen to notice it, get in to a smart doctor ASAP, and get a long enough, STRONG enough, dose of doxy....

AND...

if you get really really lucky and didn't happen to get any co-infections...

...then yes, you can be all done!

However, 13 months after getting bitten, you've had lots of time for your particular critters to disseminate throughout your body.

Hey -- President Bush had lyme and is supposedly recovered!! However, curiously, no one will tell us what treatment he received. I seriously doubt it was the standard 10 day dose or (shudder) the "one-day" dose sometimes recommended by the IDSA. In fact, his doctors consulted with one of the best LLMDs in the world on the sly if that tells you anything.

I'm only trying to prepare you for what is LIKELY to happen with a non-lyme literate doctor, not trying to scare you. I want people who haven't had the experience to prepare for the lecture they're gonna get, the "tsk-tsk'ing" they will probably hear from their MD; otherwise it's easy to be intimidated and overwhelmed and forget everything -- doctors have a way of doing that to you.

Some doctors can be educated. However, most of them balk and can get very defensive. Most people find it intolerable and decide to find an LLMD. I do hope it works out for you, but please let us know! I'll be looking for your next post!! Don't forget to tell your doctor you'd like a copy of your western blot results. (But don't tell him you intend to post them here!)

Michelle
 

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Posted by sixgoofykids (Member # 11141) on :
 
Abx therapy long term is not difficult for everyone. You are on a message board with people looking for answers and support with difficult treatment.

If my daughter were the only one with Lyme I wouldn't have a need for this board ... it is for support for myself that I need it.

She has been on abx for 5 months. She is doing AWESOME! Her learning disabilities in school are essentially disappearing, she feels GREAT! She has herxes, but they're every 30 days and all emotional ... since she's 14, that could be hormonal.

She has seen nothing but improvement in everything -- her health, her demeanor, her cognitive symptoms, her joint pain, etc.

She was not really sick when she got started on abx ... we didn't wait till she was. She was a borderline case.

So, you may breeze through treatment even though it could be long term. This is why you need an expert. I would still fly to NY to see our LLMD even if a "new" one opened up down the street. Experience in treating Lyme is essential, whether you have a mild case like my daughter or a severe, debilitating case like mine.
 

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Posted by Polaris (Member # 11391) on :
 

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When you go on doxy, you're likely to feel like a truck hit you.

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