posted
I just found out the llmd I'm seeing in September does one drug at a time (monotherapy, right?). Did anybody get better this way?
It's too late to cancel and he's relatively close and I'm not well enough to travel.
Posts: 255 | From - | Registered: Jun 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
It's doesn't work for me and is completely against what Dr. B states in his Lyme guidelines. I get a bit of symptoms relief at times, but it's no cure/remission strategy IMO. Same with low-dosing, pulsing when you want, etc.
I only noticed ANY improvement when I hit full-dose (and I believe my full-dose is low as my doc doesn't test Abx levels in blood). Herxing is an issue to contend with and be managed though. My impression is baby doses/non-aggressive therapy = treating for 5+ years.
Everyday I wish I could turn back the clock 12 months on my Lyme treatment, and start over with aggressive therapy. It still may have failed, but mono therapy is ignorning a HUGE part of ILADS research. It makes no sense to me.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I've been on monotherapy for three years. The
last few months I have added in flagyl, taking
Doxy 4 days a week and flagyl 3 days. I'm not
well, but definitely better.
Posts: 72 | From SW Texas | Registered: Dec 2006
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sutherngrl
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posted
I actually believe you can get well on mono therapy but it takes a long time. I have seen others get well this way over a 4 or 5 year period.
I began my therapy with a cyst buster and another antibiotic for 1 month, and have been on mono therapy ever since. Been in treatment 15 months and am slightly better. So there you have it. Mono therapy is not a fast cure.
However, that being said, there are many who have done aggressive therapy for years and are not well yet either.
Also some people cannot handle large multi doses of antibiotics and have no choice but to go "low and slow".
I read where someones doc said "you can fry an eggg fast or slow, but either way it ends up cooked". I think I got that right.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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seekhelp
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posted
The problem is five yesrs (if not on SSDI or granted a LTD approval or lucky enough to have a rich, healthy non-Lymie spouse) will financially bury 95% of sick people. They lose their houses, career, family, etc. The risk is too great. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Mono therapy served me very well the first 4 months of my treatment...took me from 10% functiontioning to arouind 60%....
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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seekhelp
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posted
Dave, to hit 100% or 90%, it seems like most people took multiple Abx. I don't know if there is light at the end regardless with a horrid disease such as Lyme, but we need the best hand we can deal ourselves.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
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posted
That is so true Seek, but I still haven't had it proven to me that those getting treated aggressively are getting well that much faster.
Also, my body could never handle it. I have mostly done moderate dosing and that was bad enough. My low dose doxy seems like it has done more for me than anything so far. Give me another couple of months and I will let you know.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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AZURE WISH
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Member # 804
posted
I think different people find different therapies better than others. I dont think there is one answer that is the right one for all of us.
I would be concerned if your dr doesnt consider/address coinfections at all though.
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
pugs,
Be sure you're understanding this LLMD correctly. Mono-therapy is generally used nowadays as a starting place, not the end-all tx for Lyme.
I don't know what co-infecs you have, but much depends on that dx. If you have coinfecs, then mono-therapy for the duration of tx is out of the question.
Best of tx to you.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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posted
You have all brought up good points. I skimmed the article above..scary. It's possible I misunderstood the doctor's secretary I wll have to see for myself.
Posts: 255 | From - | Registered: Jun 2009
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ping
Frequent Contributor (1K+ posts)
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posted
pugs,
It's not unusual to have visits with a couple of different LLMDs in order to find one that you're comfortable with. That said, a person working the front office of a med facility might not have a clue of what's going on in the dr.'s actual practices.
Yours is the right move - Ask the doctor.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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Lymeorsomething
Frequent Contributor (1K+ posts)
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posted
Well, how does one explain the successes with Ceftin? Dr. B got well this way...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Someone on here said Dr. B forgot to mention the IV Rocephin he took beforehand. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
It would have been nice to hear that from Dr. B himself
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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