posted
This is a good question. But if I think of how high my bug load was when I started treatment, to throw in a cyst buster on top of those first herxes, I think I would have become very discouraged, let alone question if I would have lived from the die off.
Posts: 582 | From milwaukee wi | Registered: May 2005
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posted
Some Dr's do start off with Tini or Flagyl paired with a macroloid or cephalasporin. It makes perfect sense! There's no sense in allowing any of the keets to transform into cysts, and it is a fact that they do that when exposed to abx. IMO you would be smart to insist on this type of combo throughout Tx. Just think of the cyst load after 6 months of abx without a cystbuster!
Posts: 132 | Registered: Jul 2005
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posted
Why don't Dr Fallon & the others at Columbia University's Lyme Disease Research Center use flagyl or tinni?
Dr Fallon admitted a high relapse rate after his rocephin study, but does not write about the spirochetes going into cyst form or suggest flagyl or tinni to patients.
Posts: 172 | Registered: Dec 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Well lets see if your carring a really big load of spirochetes and kill tons of them with a given abx then a massive herx why would you want to bust the cyst form at the same time and throw in all there toxins to? I think that that would cause a major herx.
For some people it would be to much. I know I didnt get on any flagyl until my herx's were down to just aching.
Also flagyl maybe killing other bacteria or protzoa.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I was diagnosed with a Bowen test and found to have the highest possible level of Bb organisms in my blood, 1:128.
I had not had any ABX, yet all of the organisms found were cysts. (The Bowen test uses a fluorescent stain and direct views the Bb in blood, rather than testing antibodies).
So, my point is that they may turn into cysts anyway, regardless of what type of ABX you use, or whether you use any ABX at all.
Having had cardiac herxes that I thought might kill me, I would rather err on the side of caution and not overdo the herxing. Even if you survive it, severe herxing causes organ damage, and from what I've read, some of it can be permanent.
NO expert here....just my two cents FWIW,
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hey Humanbeing This is a good question.
Don't think the "science" has cuaght up to the question yet.
I personally wasn't on cyst busters well into many months of intensive IV till my germ load came down.
Later I began to pulsing flagel. Which over time stopped working. And I started the tini. The herx's on IV where so intense that I can't imagine living thru the cyst busters on top of that.Later for the last 2 years I always took the ABX with the csyt busters and never just flagel alone.
I agree with Kluzto and the others in that you can herx too strong in the beginning if your germ laod is too high and it can be too much on your system.
In therory the csyt busters taken with ABX make sense but nothing about this disease make sense.
I hope sonmeday there is stronger evidence from scienticfic research.
posted
It's pretty common that a person can get to feeling really well on Rocephin (even normal), but then they relapse fairly quickly after being taken off of it. This is probably the reason...Rocephin either kills a lot of the keets or drives them into cyst form, and then as soon as it's discontinued a whole new batch of keets are loose again.
It's not just a one for one transformation either. It's something like 3 new keets out of each cyst form. So I would opt for hitting both of them at the same time. It's quite possible that it takes just as long to kill all the cysts as it does to kill all the keets. Most patients usually only end up getting a couple of months of cyst busters in a years treatment if even that.
posted
My LLMD always gave me the cyst buster (flagyl or tini)and the mopper-upper (ketek) together and did not mention pulsing.
Right now I am back on ketek and tini. This is my 3rd go-round with it and I must say, I've had the best 2 weeks since starting antibiotics 4 years ago!
1. The first 4 months was a rotten blur to me...imagine my system was very loaded. Started feeling better after the 3rd month.
2. mepron and zith 4 months followed. Really felt great improvement. Then no more antibiotics for 4 months.
3. Another 2 month round of ketek/flagyl. Felt pretty good, followed by another 4 months off all.
4. This latest round is a miracle. And no herxing, just a great feeling of life.
I do believe I will likely be on a maintanence dose for intermitent periods, perhaps for a long time. But it did work for me, and I really did not expect this.
I've even gardened like crazy for 2 weeks....first time in 2 years!!!
Sorry, this has gotten long. But I wanted to share how I was treated by one of our few LLMDs in Canada.
Posts: 190 | From BC Canada | Registered: Jul 2004
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posted
In my opinion, slow and steady is the way to go.
Hubby very rarely takes the normal standard therapeutic doses of antibiotics to start -- have to ramp everything up slowly.
And forget about cyst busters -- sometimes manage to do 1/4 Flagyl for a couple of weeks at a time.
I have read too many horror stories and seen too many reactions from him to start throwing massive amounts of drugs at him -- not even sure I would do this if there was a doc who could hospitalize him.
The thing we have not been able to do that I think would be a better option for many is to rotate between different meds every week or two.
Just my opinion, but I think that would be a more workable option for those with very bad infections.
Also, combining low dose herbs with antibiotics and colloidal silver (Argentyn 23) seems to be a good combo for hubby. At least it seems to have brought the Babesia out of hiding and treatment this time for that really seems to be working.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
There is a DVD available from The Greater Hartford Lyme Disease Conference held over a year ago in Connecticut. Dr. JoAnne Whitaker and Dr. Lida Mattman do presentations on the L-form / Cysts forms of Lyme disease and their connection to autoimmune diseases. Very educational, and truly backs up the microbiology behind Cell Wall Deficient Forms... explaining the complexity of these forms and how devastating they can be.
You can view clips of this conference at The Greater Hartford Lyme Disease Action Group website: http://www.ctlymedisease.org/
SandiB
Posts: 991 | From USA | Registered: Aug 2001
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
quote:Originally posted by seibertneurolyme: In my opinion, slow and steady is the way to go.
Hubby very rarely takes the normal standard therapeutic doses of antibiotics to start -- have to ramp everything up slowly.
And forget about cyst busters -- sometimes manage to do 1/4 Flagyl for a couple of weeks at a time.
I have read too many horror stories and seen too many reactions from him to start throwing massive amounts of drugs at him -- not even sure I would do this if there was a doc who could hospitalize him.
The thing we have not been able to do that I think would be a better option for many is to rotate between different meds every week or two.
Just my opinion, but I think that would be a more workable option for those with very bad infections.
Also, combining low dose herbs with antibiotics and colloidal silver (Argentyn 23) seems to be a good combo for hubby. At least it seems to have brought the Babesia out of hiding and treatment this time for that really seems to be working.
Bea Seibert
Hey Bea. Your situation sounds much like ours. Hubby is having a bad bad herx time right now, after doing too much flagyl. He had the bright red face today, and his vision blurred up on him twice.
The thing is, he doesn't read all of this stuff, and doesn't get "power of suggestion" type problems.
He's just sick.......and having a bad bad herx after too much flagyl.
Gotta flush this out of his system, I guess.
God Bless to all.
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
Dr M. started me on Ketek and Flagyl right off the batt. Within five days I am brutal...i am going to stick to it...no pain no gain is my theory....I felt great on Doxy but Dr. M said that was not enough
lesley
Posts: 120 | From NB Canada | Registered: Jan 2006
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