Checked most of the newbie links, but have a specific question.
I have early (2-3 months) Lyme (sero-positive) and have taken 400mg minomycin / day for the past week. Before that I took 100mg / day, but I got worse. My symptoms were very neural - lots of brain fog and memory problems - probably because I live in Japan, and I heard Asian BB is more neural. I still have a lot of confusion and I can't concentrate. My question is this.
Does anyone have any advice about how long I should put up with brain-fog / confusion before agitating my Dr to change the antibiotics?
I know that it's really important to try and nail BB early, so I'm worried by my lack of improvement. Any advice gratefuly accepted
Thankyou!
-------------------- Love is like a pineapple, sweet and indefinable Posts: 7 | From Japan | Registered: Jul 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
so youve only been on the abx for a week or so?
thats not usually long enough to tell if its going to work well or not.
usually its good to give the abx at least 3 weeks before re-assessing (this is just my opinion)
i do understand your frustration, and brain fog is a scary thing.
if you are experiencing primarily neuro symptoms you might consider iv antibiotics, as they are usually somewhat more effective at getting to harder to reach places.
if youve only been sick for a few months, you have a good chance of beating this no problem.
do remain persistant with your doctor, and listen to your body
good luck
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Thankyou for sharing! I'll keep on with it for a couple of weeks before I press the panic button.
Through ignorance they started me on 100mg / day for a month - not enough I guesss because I got worse so they uped the dose, and now I'm on the 2nd week at high concentrations.
Fingers XXXXXXXXXXXed
-------------------- Love is like a pineapple, sweet and indefinable Posts: 7 | From Japan | Registered: Jul 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Usually they start people on Doxy (grown man usually 400 mg a day) because it works against the other infections often in same bite as Lyme-
you are not on a usual Lyme drug- makes me worry your doc doesn't know what they are doinG!!!!
YES there is a brief window to get this GONE- and it all matters more than you know- after 9 years here and I was caught at time of rash and under-treated- let me tell you- I know!!! I am glad you are even aware of this stuff, but I would be more assertive with your doc!!! You don't want to still be HERE in 9 years like me!*)*!)! Best wishes, Sarah
-------------------- 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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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
My symptoms were also mainly neural, and my LLMD prescribed mino. I SLOWLY improved at first, but after 3 months I was greatly improved. I took mino for 7 months, and have just recently stopped the antibiotics. So far, so good.
Just be patient (which I know is not always easy), and I think you will eventually be glad that you were prescribed the mino.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
Yeah, I was confused too when I started to read about it. I know my Dr is inexperienced, but he's open minded and also may be following protocol
here (in Japan) they allways start on Mino, because they say it has better penetrance than Doxy but the same action. Dosen't stop them from also saying 31 days is adequate though. I convinced the Dr to read a lot of the links on Lymenet, and so he'll keep me on much longer until I have 4 weeks symptom free.
Little better today... but it's slow....
Just out of curiosity, what dose did your LLMD prescribe Lou? I know everyone is different, but I'm curious because I was getting worse on 100mg / day and bullied the Dr for more. Checked the Merk index and got him to prescribe the maximum. It's all a bit sketchy really, but as long as I keep getting better I guess it's OK
I have so much repsect for all of the resources and great people assembled here. I would be in much bigger trouble without you. Thankyou.
-------------------- Love is like a pineapple, sweet and indefinable Posts: 7 | From Japan | Registered: Jul 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
I was on 200 mg/ day. 400 mg is a high dose, but if you can tolerate it, and you are improving, stick with it.
Generally, I think that 2 months symptom free before stopping antibiotics is recommended.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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JimBoB
Unregistered
posted
2 to 3 months of having Lyme before being treated is a LONG time. You SHOULD do it within 3 or 4 days, certainly not more than a week or two, to have a real chance to be healed.
I waited 5 months, and that was WAY TOO LONG. I took Cipro for 24 days, and while that got rid of ALL of my symptoms for after about 5 days, that only lasted for about 8 or 9 months. THen I started slowly relapsing. And he was ignorant like YOUR doctor and wouldn't give me any more abx.
So, I kept getting worse for a few years. Until the neuro Lyme got so bad I couldn't remember hardly anything, and got lost going into a truck stop on the interstates and trying to get back out. AND my vision got really bad. I was dangerous out on the highway.
THis all started with a bite in October of 1999. By fall of 2005 I had to quit traveling, hauling old cars.
I finally went on Buhner's Protocol on November 25, 2005, and started feeling better in a few days. MOST of my neuro symptoms went away after about 11 days. But then I went back on some abx. First Tetracycline, then Doxycyline, and I got really bad, until I quit it two months later. THen I started to improve again.
I was living at about 30 to 40% back in November of 2005. Now I live at anywhere from 80 to 90% these days.
I have been on the herbs now for a little over 19 months.
Your choice WHAT protocol or protocols you go on. Remember it is YOUR body, and only YOU know it best. All those docs are strugging out there to find out what to do.
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