posted
Hi All - I saw my LLMD today (actually saw his P.A.) I have been on a pulse dosing regimen of oral ABX since mid-May 2012.
The regimen,known as the induction phase (their words), was three ABXs on Mon, Wed, and Fri (minocycline, azithromycin, and omnicef) for two weeks on and one week off. During the second week I was to add Flagyl on Thurs and Fri for its cyst-busting capability.
So this is what I have been doing diligently. However, today I found out that they also should have had me on a biofilm supplement called Nattozyme, but no one told me that. The P.A. admitted that it was their oversight for not having had me on it.
I have had very little reaction to the ABX (except for GI problems). I haven't herxed or anything. I wonder if it could be because they failed to advise me that I was also supposed to be on this biofilm supplement.
I am soooo mad!! I pay a lot of money to see these folks. You'd think they wouldn't forget something like this. Do you all think I've just wasted four months of treatment?
Today they told me that they were moving me from the induction phase to the Babesia phase so they changed they minocycline to mepron and told me to add the Nattozyme and some other supplements with all else staying same except the schedule which will eventually be two weeks on and two weeks off.
Please let me know your thoughts about having lacked the biofilm supplement these several months and whether you think that contributed to my feeling little, if any, effect from the ABX therapy.
Sooooo frustrated.
Thanks.
Posts: 52 | From Central VA | Registered: Jun 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Many here will not be able to read your post. If you want more replies, you might edit in some space breaks - many need that "breathing room" for the eyes.
Paragraphs less than 3 or 4 lines are best for most eyes here, though. Just hit the enter bar twice to create a space break.
And, for each new thought or question, a new paragraph. That gives our brains some "breathing room" as well. And you'll get better replies that way.
EDIT ICON - just to the right of center above your post. The tiny pencil & paper. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
My little .02 cents-
I don't think missing the enzymes would be that big a deal, it is the only taking
antibiotics 3 days a week that sounds more troublesome.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
No, I don't think it is the end of the world with no Biofilm busters. Many people have not tried those for months & years. It is always better & safer to be on one early on.
You are lucky your LLMD at least suggests a biofilm buster, mine does not & I take it on my own.
At the same token, what idiocy. That is all that they do LLMD. How can you forget something like that or even a cyst buster early on. For some it may mean the difference between getting well & chronic sickness.
It's not rocket science & they do the same thing over & over again. Treating symptoms and organisms in the dark.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
Keebler - Thanks for your note. I have edited my post. I will try to use this format going forward.
Posts: 52 | From Central VA | Registered: Jun 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks. That works much better. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
So you are taking the antibiotics only 9 days of the month??
And then your cyst buster (flagyl) 6 days of the month?
That's where the problem lies, my opinion.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Surprise - Thanks for your post. My LLMD does the pulse dosing thing. He's supposed to be one of the best.
Sometimes I think I should be on a different regimen (dosing more often or even daily), but supposedly he's done all this research and these are slow growing organisms, ya da, ya da, and so you can treat them with pulse dosing. Who knows?
This disease is so frustrating.
Posts: 52 | From Central VA | Registered: Jun 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Well, it is interesting.
Yes, and frustrating :-/. Sorry.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Lymedin 2010 - Thanks for your reply. Honestly, I think my LLMD's practice has gotten so busy that they have gotten a bit sloppy.
I always have to wait an hour or two to see someone even when I arrive early for my appointment. Things always seem rushed and frantic.
Also, I can never get a live human on the phone when I call the office. I always have to leave a message. Also, you can never talk to the doc or PA, only to the nurse.
I deserve better....don't we all????
Posts: 52 | From Central VA | Registered: Jun 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
There are too few docs for too many patients. Keep that in mind. I can give you names of some docs that will have plenty of time for you, because they don't treat many lyme patients and follow the IDSA guidelines. Which means you would soon be at the end of your treatment.
Some people have gotten better without enzymes or cyst busters. It is only recently that these elements have been added by some docs. This is an evolving process, with docs getting no help from researchers on how to treat.
I know you want to be well yesterday, but that generally doesn't happen with people who have been sick any length of time. So, try to develop patience and the attitude of a long distance runner.
[ 10-10-2012, 08:33 PM: Message edited by: poppy ]
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