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» LymeNet Flash » Questions and Discussion » Medical Questions » Flagyl really helping me? (Page 1)

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Author Topic: Flagyl really helping me?
canefan17
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Since starting flagyl 2-3 weeks ago I had some defininte herxing (chills, shakes, frontal headache, fatigue, sleeping alot)

But then this week that all lifted and I feel really good. Better than I have in a long time (6 months or so).

What could flagyl be hitting? Cysts don't really CAUSE symptoms so I'm thinking on top of cyst busting it has to be treating something else.

CPN?
Babs?
Bart?
Myco?

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TF
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Killing cysts causes toxins to be released which causes herxing.

That's why Burrascano says this about flagyl:

"Strong Herxheimer-like reactions are seen in almost everyone." (page 15)

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canefan17
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But why would I feel so much better after using flagyl than I did before.

I didn't think cysts could actually cause symptoms (until killed)

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Keebler
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You ask: "But why would I feel so much better after using flagyl than I did before.?" (end quote)

So, you complaining? Don't over think this. It seems to help. Accept that it's working on a couple different levels. It is.

You say: " Cysts don't really CAUSE symptom" (end quote).

Well, cysts DO cause symptoms when they break open and spirochetes go to town.

If you can decrease the cysts and address spirochetes at the same time, you decrease the potential packs of spirochete party crowds. You gotta take out the bus if you don't want the crowds showing up.
-

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canefan17
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I know - I meant before you kill cysts they aren't really causing symptoms.
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Keebler
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Yes, they are. All along, there are plenty of these cysts that break open.
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lululymemom
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My daughter didnt start to improve until she added flagyl and treated parasites..

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

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mlg
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it kills parasites
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mlg
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it kills parasites
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mlg
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it kills parasites
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canefan17
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I've also added some weight (7 lbs or so)... so hitting parasites makes sense too.

I bet it's hitting cysts as well.

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nnecker
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cane,lets talk about cysts.

You see Dr Sapi's study all the time here about antibiotic cyst and biofilm formation in the test tube.

http://www.ncbi.nlm.nih.gov/pubmed?term=sapi%20cyst

And here is a study on ceftriaxone creating cysts in the test tube.

http://www.ncbi.nlm.nih.gov/pubmed/12422604

Dr Brorson's study shows that he can create non antibiotic stressed cysts in the test tube,and when he puts them back into culture serum,they revert back into DIVIDING MOTILE INFECTIOUS SPIROCHETES in about six weeks.

http://www.ncbi.nlm.nih.gov/pubmed/9266264

Dr Brorson concludes that it is probable this may occur in vivo as well.

Ok,lets have a look at some in vivo studies to see if Dr Brorson's and Dr Sapi's hypothesis is correct.

http://www.ncbi.nlm.nih.gov/pubmed/16797205

http://www.ncbi.nlm.nih.gov/pubmed/18316520

http://jcm.asm.org/content/38/6/2191.full

http://www.jci.org/articles/view/58813

http://www.ncbi.nlm.nih.gov/pubmed/12404158

http://www.ncbi.nlm.nih.gov/pubmed/18037049

In all these in vivo studies there were no antibiotic treated animals that were serum culture positive for DIVIDING MOTILE INFECTIOUS SPIROCHETES for up to nine months after being treated.All non antibiotic treated animals were culture positive.

Where are the reverted DIVIDING MOTILE INFECTIOUS SPIROCHETES Dr Brorson and DR Sapi are hypothesizing will happen to them when you take antibiotics?They are a no show.The Yale study photographed a couple of these cysts being formed,but they were culture negative.

Yes,there was borrelia DNA detected in the tissues of the animals.Ticks were allowed to feed on the treated animals and the ticks captured and were tested positive for this DNA.However,when these same ticks were allowed to feed on non infected mice,they could not infect these mice with DIVIDING MOTILE INFECTIOUS BORRELIA SPIROCHETES with it.

You can run these studies all you want,as long as you do it correctly(infect the animals with ticks,treat for 21 days or longer,make sure the antibiotic level in the blood is correct,and don't use steroids or immuno suppessors)you are going to get the same results over and over.

What else can you conclude except that this cyst/biofilm hypothesis is a bust?These studies should provide strong evidence that the cyst/biofilm hypothesis is correct by being able to culture spirochetes in serum from antibiotic treated animals,but they show it cannot be done.

--------------------
nn

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Keebler
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Bottom line:

There is no doubt that borrelia forms go beyond just the typical spirochetes. It takes several forms, not even just spirochete and cystic form. No doubt about that at all.

We ignore that at our own peril.
-

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Keebler
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http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/119943

Military says Bb persists
-

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nnecker
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The questions is,are these other forms dividing, infectious and cultivable.Got any examples?

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nn

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beths
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http://www.ncbi.nlm.nih.gov/pubmed/19995919

These results extended previous studies with ceftriaxone, indicating that antibiotic treatment is unable to clear persisting spirochetes, which remain viable and infectious, but are nondividing or slowly dividing.

Kinda refutes the earlier studies-

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nnecker
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In this study they state that ALL TREATED MICE WERE CULTURE NEGATIVE.This does not meet Brorson,s hypothesis of DIVIDING SPIROCHETES.Only SOME of the mice were DNA positive,and are NONDIVIDING or slowly dividing which they do not specify what that means.Either way you have to really pushing it to meet the Brorson study of a cultured dividing infectious spirochete in six weeks.And this is just one study.

--------------------
nn

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TF
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To get back to cane's question, I have not looked into this but it seems to me that if you have a lot of lyme cysts in your brain and other parts of the body, they may interfere with bodily functions.

It seems to me that I read that McDonald or someone else found all of these lyme cysts in the brains of Alzheimer's patients upon autopsy. So, did the cysts cause the Alzheimer's and would killing cysts make the brain function better?

That's the kind of thing I am thinking about.

Here is one quote about it:

"Borrelia spirochetes in Cystic form are demonstrated in the Alzheimer plaques, and are
demonstrated within Pyramidal neurons of the Hippocampus. ( See In Situ DNA Images)"

http://molecularalzheimer.org/

Since lyme cysts aren't supposed to be in our brains, they must have a negative effect on brain function.

Cane, why don't you research it and tell us! (If you are too sick right now, I understand.)

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TF
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Here is a PubMed Abstract:

http://www.ncbi.nlm.nih.gov/pubmed/16675154

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beths
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I think you are reading it wrong-it's hard to interpret. The mice were PCR culture negative, but they were able to obtain LIVE spirochetes. In other words, it was a false negative. Slow dividing is up for interpretation, as most bacteria divide rapidly. In comparison-a four week cycle would be slow.

I think honestly....we just don't know.

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canefan17
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Neurons of the Hippocampus would explain the agonizing headaches I had from flagyl and the reason my LLMD uses certain drugs to block the over-excitement activity in the hippocampus (toxins, bacteria, auto-immune)

I used to NEVER be able to clear a bad neuro-herx until I started Ativan. Dr J also believes it clears neurotoxins by down-regulating the auto-immune/inflammation/excitability that sparks from die off.

But nevertheless... how do most people take Flagyl?

Right now I take it 4 days on, 3 days off.

My Doc wants to do 2 weeks on 2 weeks off.

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soccermama
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I take it three weeks on and three weeks off. Right now I have not been able to start my three week cycle because I am taking ceftin, rifampin, and minocycline.

It has been tough...I will be starting next week after my daughter's wedding.

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TF
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I took flagyl every day, 3 times per day, for 60 days straight.

But, that was based on my previous treatment. My final doc told me that all of my lyme was converted into cyst form thanks to 2 years of just amoxicillin. So, his job was to clear the cysts. That's why I took it continuously.

Ideally, I believe you would kill cysts as you go along treating the spirochetes. So, for example, you would take the flagyl for 2 weeks every month, or some other set routine.

I believe I read somewhere that you had to take flagyl for at least 14 days in a row (my memory may be wrong on this, but it is what I believe I read) for it to be effective.

I may look it up. I have a feeling that was from some notes I took from a Burrascano talk.

Anyway, if a patient can't handle that, the docs let you work up to it, evidently, because many have trouble taking it that long.

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canefan17
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TF,

Do you remember at what dosage.

I'm only taking 500mg a day too (because it hit so heavy early on)

We'll eventually go to 1000mg per day.

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TF
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I will pm you the dosage as it is against LymeNet rules to post it publicly.
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TF
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At the MacDonald site above, look at the shots of a lyme cyst invading a nerve cell and you will likely never say again that you thought cysts didn't cause symptoms.
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Keebler
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TF thanks for reminding me WHERE I saw that. I could not recall but have been wanted to share that for sometime.

Thanks again for this link. Pulling that down from your post above for anyone picking up this thread at this point:

http://molecularalzheimer.org/
-

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nnecker
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A quote from DR MacDonald about cyst/biofilms on another blog on Feb 8 2012.

He states "I believe cysts/biofilms are PLAUSABLE" he gives six reasons why and then states:

"My beliefs and the evidence above does not yet prove the existence of cysts/biofilms of Borrelia.At this time there are no peer viewed papers to endorse the existence of cysts/biofilms".

When asked about quack remedies for these cysts/biofilms,he states:

"I have no knowledge about these so called cystbusters"

--------------------
nn

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nnecker
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All of this really does not matter.To me, the burden of proof is on you.If a LLMD wants me to take a cystbuster,I say ok fine,why?

He says,well test tube research shows this and that.

Test tube research?You have to do better then that?At least show me some in tissue research on it.And there it is.Is that good enough evidence for me to take a cystbuster?Hell no.

The Yale study shows that the technology is there to show if this cyst/biofilm hypothesis is correct.They photographed cysts being formed in living tissue.

Show a study where they create,photograph,and culture dividing infectious spirochetes,that come from Doxy created cysts/biofilms in living tissue and I will believe it.

It is just that simple.

--------------------
nn

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CherylSue
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My LLMD has me pulsing Flagyl 2 consecurtives days per week. I feel the effects 2 days after I stop which may be caused by the cysts bursting open and being released, an after effect.

Getting back to the original question, cysts do cause symptoms. Bursting them open and killing the encased spirochetes would be causing discomfort initially, but if the treatment worked, it would reduce the bacterial load and the patient would feel better.

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nnecker
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Fine, Brorson says when you put these cysts into serum culture,they should burst open too.

Show me an animal study where the animals where tick inoculated,treated for at least 21 days with Doxy and the antibiotic levels in the blood were maintained at a proper level,and no immuno suppressors were used,that where serum cultured with viable spirochetes from tissue samples of treated animals.

Then I will believe it.

--------------------
nn

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Keebler
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nnecker,

You don't have to believe the cyst form exists or poses a threat. You can choose to do mono-treatment and follow the doctors who want to keep it simple. You might get lucky. It depends on the strain you have and the combination of coinfections.

Not all with lyme even have the same strain and this can cause more frustration with research.

Still, for those who want as much detail as we can find out - at this point in time - it is to their benefit to consider ALL forms, shapes, cycles of Borrelia, not just the spirochete.

As for why you are here - I don't understand. You've implied time and again that you are content to treat just lyme for 21 days with a single Rx and then go on your merry way.

If you scouting the web to learn more, great. If not, I do hope you are done with treatment then and all is good with your health. That would be nice, indeed.
-

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Keebler
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There is good detail in the many links here.

http://molecularalzheimer.org/

=============================

http://www.lymeinfo.net/lymefiles.html

LYME DISEASE MEDICAL LITERATURE SUMMARIES

Bottom of page, links:

* Cystic Form of Bb: An Introduction

* Cystic Form of Bb & Other Spirochetes: Advanced

Lyme Disease - Survival in Adverse Condition

30 page pdf -- page 17: cystic form


* Cystic Forms of Spirochetes: A Complete Bibliography, 1905-2010
-

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nnecker
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Kebbler you keep talking about different forms,what other forms are their besides cystform and biofilm form?

The link you provided only shows cyst form and biofilm form in different sizes and shapes.

I have never said you should take 21 days of doxy and be on your merry way even though a lot of animal research has shown this to be the case.I have said 4 to 6 weeks of it is a reasonable amount of time for early lime,but any more is overkill.

The hypothesis is that cyst and biofilms and what ever else forms you are talking about are resistant to antibiotic treatment and revert back into spirochetes when abx treatment is stopped.

Where is this happening in living tissue.Can you show me?

As far as why I am here,who else here asks questions like that?Should the new members or people just lurking just take what you and others say here for granted?

For example,people keep pushing Burrascano's guidelines.In those guidelines he mentions cystforms and drugs for them.

Ok,like I have said, the burden of proof is on him,and I am asking where is this happening in living tissue,I don't see it and nobody here can show me either.

So maybe the uninformed people out there might want to scrutinize these guidelines a little closer and not just follow them like the gospel.

If I am wrong about everything I say, then just prove it and you have nothing to worry about.

--------------------
nn

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Keebler
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Q: what other forms are their besides cystform and biofilm form?

There are other forms - this is not as simple as the IDSA makes it seem.

Six weeks treatment with one Rx is also not going to be enough for many even if they had just lyme.

----------------------------

http://www.borelioza.org/materialy_lyme/the_complexities_of_lyme_disease.pdf

The Complexities of Lyme Disease A Microbioloty Tutorial

- by Thomas M. Grier, MS


http://www.mdjunction.com/diary/why-do-we-call-them-experts-by-tom-grier/what-went-wrong-by-tom-grier

Why do we call them experts? by Tom Grier


http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/374434-tom-griers-lyme-ms-story

My Story - by Tom Grier, MS


This author has personal experience over years and has written a great deal on the topic. A couple years ago, he had a five-part article series.

Be sure to locate each of those essays if you really want to learn more. They are excellent and answer many questions.
-

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LymeMom Kellye
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NN, I personally appreciate the questions you pose. But what I find upsetting is your tone.

If you've been a member since June you must have been treating for at lest 8 weeks maybe more. Are you well? Are your symptoms gone? I hope so, I really do. Or are you still struggling?

There are many of us who went years without a diagnosis and have chronic late stage Lyme and a host of other infections. My 18 year old daughter being one of them.

3 years ago she got so sick that she was house and bed bound. Finally she was diagnosed with Lyme and had a CDC positive test. She also tested positive for Babesia, Barronella, Erlichea and a few others. She was and still is sick despite being on antibiotics for 2 years. There are thousands just like her. So. Should we just call it quits? Let her lay in her bed until she dies? I don't think so!

So while there may be no 'proof' that the cysts harbor infectious spirochetes, there is plenty of proof that long-term multiple antibiotic treatment does work, and that people do get well, recover and live full and productive lives.

Death? Life?

As long as I am able, and my daughter is still sick we choose life over death and will keep fighting. As far as I'm concerned there is no other choice.

So while your questions and research data show that there is still a lot left to be done, I believe that the way you say it and how you are emphatic that those treating cysts etc are being treated by quacks or unsubstantiated hypothesis is actually potentially harmful.

Learning about Lyme and making life and death decisions every day is a heavy burden. I used to doubt myself all of the time. Had I read your numerous posts while learning about Lymr I may have chosen a different treatment path for my daughter. I may have quit treating after six weeks. Had I done that I believe my daughter would be much sicker than she I'd now.

Instead she is now on IV antibiotics and for the first time in 3 years she is making substantial improvement.

So please consider that there is already enough uncertainty around diagnosis and treatment and tone down your posts. I would hate for a newbie to read your posts and figure that 8 weeks if treatment is enough even when still sick.

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Keebler
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-
You asked what other forms beside cyst form and biofilm?

Really, biofilm is not so much of a form as a coat to break through - or a colony of muck for protection of various nefarious players.

Other forms detailed in the articles below. I'm disappointed you were not able to see that posted above.

Links for each below do not have URLs that will copy and paste, you have to keep going back to the main page and then scroll down.

http://www.lymeinfo.net/lymefiles.html

LYME DISEASE MEDICAL LITERATURE SUMMARIES

Bottom of page, links:

* Cystic Form of Bb: An Introduction

Page 4: Table of contents for DIFFERENT FORMS


* Cystic Form of Bb & Other Spirochetes: Advanced

Lyme Disease - Survival in Adverse Condition

30 page pdf -- page 17: cystic form

DIFFERENT FORMS through this work


* Cystic Forms of Spirochetes: A Complete Bibliography, 1905-2010
-

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nnecker
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Still just different names for the same thing cystform/biofilms.And again just somebody's opinion,no tissue studies showing cysts/biofilms converting into spirochetes in tissue.

And just for the sake of argument,lets just say there were these mystery forms.How do you know what abx,s would kill these mystery forms.I am sure you have tons of tissue studies about them.

--------------------
nn

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Keebler
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Antibiotics DON'T kill all the forms. That's the point. Other drugs, other methods are needed, too.

Antibiotics, alone, are not enough. Especially, just one Rx is not enough (except for a lucky few or those with the less troublesome strains and no coinfections).

Combination treatment is required for most, along with serious support measures to help the body manage.

Biofilm is NOT the same as cyst form. Cysts can create a biofilm but that is not all that there is to them. Not at all.

Many infectious microbes can create biofilm.

I hope you can read the articles someday.

I am not here to spoon feed anyone studies with each question. I like to think such links help people to find good sources.

I believed those like you who said I'd had enough treatment with six weeks of doxycycline.

I've been very ill and home-bound for the past four years, not even able to enjoy a meal with others. I want to help others avoid that. The details for what can happen are beyond horrifying.

If you want to learn, you might at least afford someone who posts good articles for you the courtesy of reading them before bombarding with more tasks.

I know you could not have read all those articles yet. There really is a wealth of detail that could help your life be better if that six - 8 weeks of basic Rx does not work out.

But, it can be impossible to repair damage. Assertively investigating all treatment options as early as possible is best.

Just because there is no single one-approach-fits-all here does not mean anyone should ignore the reality that treatment for tick-borne and other chronic stealth infections is very complex and has a long way to go.

And, pharmaceuticals may not be the answer for all advanced cases. There are some other options for those who can think outside of the box.

Bottom line: individualized treatment with combination, rotation, utilizing the best direct treatment and support from all corners of medicine is what finally helps those who have been tossed aside by the IDSA disaster of an approach to lyme treatment.

Go back to up Tom Grier's story. It's a good place to begin.
-

[ 09-08-2012, 06:56 PM: Message edited by: Keebler ]

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Keebler
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You want tissue studies?

Look at some of the slides here (but you'll still need to read more about how lyme works, too. It's not like other infections in so many ways. It's very complex):


http://molecularalzheimer.org/
-

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Keebler
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Just in case your doctor has not yet considered coinfections, for most with lyme, it's never just lyme. Treatment for lyme can't cover all the bases.

Some of the other infections that can travel with ticks:

-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.

See TIMACA's link here for even more detail.
-

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nnecker
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I never said biofilm is the same as cyst form, I never said one word about IDSA and dont care about what they say.

Im not talking about coinfections,thats another topic.I am talking about converted cystform/biofilms when you take antibiotics,then when you stop taking them they convert back into spirochetes.

You keep showing me the Dr Mac photos of cysts and biofilms.These are not cysts/biofilms that were converted to spirochetes.And I already told you what he said about cysts and biofilms.

Why can't you stay on topic,you always go in a thousand different directions.

--------------------
nn

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LymeMom Kellye
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Stop! This is counterproductive. This is a forum for people to get help and information. Most of our lives are already stressful enough without having to be caught in a firestorm.

I think basic manners would go a long way, starting with please and thank you. Attacking people and rudeness doesn't belong here.

Keebler and others thank you for posting all of the links to the various research. It is really helpful. I always learn so much when I read them.

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WPinVA
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Agreed! This has gotten way out of hand. Keebler is one of the most helpful and knowledgeable people on Lymenet. Her selflessness in helping scores of us navigate our way through treatment with this awful disease is nothing short of amazing, and I can't stand to see her subjected to unwarranted personal attacks by someone who she is trying to help.

I come here for support and understanding and while I personally don't think Keebler ever goes off in a thousand different directions, it would be understandable if she or anyone else on here did, as WE ALL HAVE LYME.

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nnecker
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Here is the problem I have with Keebler.In the thread "recently diagnosed-questioning the diagnose" she posts the Dr Sapi cyst study and then states to a new member:

"Doxycycline(or many other antibiotics)can cause Lyme to go into the "cyst" form within 20 minutes of taking the first dose.

Antibiotics are not effective against this form of Lyme and it can go into "hiding" and come back later as chronic Lyme,harder to treat.For that reason many LLMD's also use what is called a "cyst-buster" Rx such as Flagyl,Tindazole.

Now I have a big problem with her telling a uninformed new person this, without a caveat stating that there is other research out there that disagrees with that view like the ones I have posted.

Now if she wants to give her reasons why she disagrees with this other research,fine,I don't have a problem with that,just as long as she shows the opposing research.

This is a serious disease,and she is not a doctor or a researcher that I know of,to be making claims like she does without caveats to them.

Now I have shown that this cyst hypothosis is on shaky ground when you look at the in tissue studies that have been done,and I have asked Keebler to show me an in living scientific research tissue study that provides strong evidence to the doxy statement she made to the new member.

She answers by talking about other forms,co-infections,Tom Grier and the IDSA.

--------------------
nn

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nnecker
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And another thing,when you tell a new person that cysts can form in 20 minutes of taking Doxy,you might want to show them this:

http://www.jci.org/articles/view/58813

Look at the photos in figure #2,but when they serum cultured the tissue from the mouse these cysts were in,what did they get? NOTHING.

--------------------
nn

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TF
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cane, the flagyl may also be hitting the spirochete form of lyme, based on a study I read.
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Tammy N.
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Haven't read all the other posts, so I'm not sure if someone shared this or not.... but I have heard that Flagyl also hit parasites. I have not researched this myself, but I thought that I'd pass this along.

Glad to hear that you are feeling good! Keep going!!!

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LymeMom Kellye
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http://www.lymeinfo.net/medical/LDCysts.pdf
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CD57
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I believe Flagyl hits Lyme cysts and possibly the L form, as well as parasites and some babesia like organisms.

I think the point is it likely hits several things.

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Pinkdoor
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This exchange was helpful. Thank you.
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nnecker
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LymeMom,

You can show all the pictures of cysts you want,I have shown some too.But what you have not shown is a picture of a cyst that came from an antibiotic treated mouse, and then shown it has been reverted back into a viable infectious spirochete.

--------------------
nn

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pme
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I think we all just need to find an LLMD that we trust and put our stock in their knowledge. The fact is that nobody knows the answer to this question for sure, but if flagyl is helping and there is a viable theory behind it......then why not go with it?

I am a researcher who cannot currently do research because of the neuro/brain symptoms. So I have not clicked on any of the above links. I find all the theories to be incredibly confusing with such incredible brain fog. Therefore, I will leave the debates to those whose brains are clear enough to comprehend the research.

I don't think we will reach full agreement on this or any topic in this forum. If we knew all the answers definitively there would be no need for this forum, we would just go to a doctor who would diagnose and treat us based on those definitive answers.

But...we are not there yet. So I will look for answers from a trusted doctor who has dedicated their career to finding plausible answers and treating me on what they currently know to be as close to the truth as we can get at this moment.

Good luck to all.

--------------------
Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009)
Dx with chronic Lyme May 2011.
LLMD April 2012, Treating with omnicef/zith
Lots of supplements!

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canefan17
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Flagyl still working for me. When I start it up I get a day or 2 of bad headaches and fatigue and by day 3 or 4 I feel really good.

Rinse repeat.

New fav drug lol

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sparkle7
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Maybe the flagyl is hitting some bacteria other than Lyme? It's pretty broad spectum from my understanding.
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Beachinit
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Dr B also says Bartonella is quick to respond and quick to return.

--------------------
Ideas not advice.

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jlf2012
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I also have such brain fog and short attention span with lyme so it's hard for me to read a lot of the studies...hard to concentrate on so much info, just speaking for myself.
It's good to know flagyl may hit parasites too. My doc wants me on it for 60 days like TF. He feels it's a risk to pulse because some of the broken cysts may be missed (I think that's how he explained it??) I'd much rather pulse. He said we'll do that if we have to. Is the theory behind pulsing that the cysts come out, get zapped by other abx, then stop the flagyl, start again and zap them again?
I'm only at 1/4 3Xday now of 250 mg and need to work up to 1500 mg a day!!

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jlf2012
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Oops, didn't realize I couldn't post my dosage publicly TF until I reread this thread.
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Lymeorsomething
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Yeah, Flagyl is one of the big guns for lyme and a good pulser to run with Amoxy.

--------------------
"Whatever can go wrong will go wrong."

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canefan17
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Beachit,

I agree with Dr B on Bartonella. That's been my experience.

Does Dr B think Flagyl can hit Bart?

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TF
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My guess is that Beachit is referring to Burrascano's Guidelines where he says the following regarding bartonella:

"Rapid response to treatment changes- often symptoms improve within days after antibiotics are begun, but relapses occur also within days if medication is withdrawn early. (page 26)

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Also did you know that Burrascano mentions using flagyl in babs treatment? Yep. Page 24:

"Metronidazole or Bactrim can also be added to increase efficacy, but there is minimal clinical data on how much more effective this will be."

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canefan17
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Someone mentioned that flagyl can hit Babs to me.

I think that's def possible as flagyl has, in some ways, brought on some babesia symptoms/flares/herxes.

Thanks TF

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sparkle7
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From what I recall - Flagyl is a serious drug with serious side effects. If we don't know what it's doing exactly, I don't know if I'd want to risk taking it for an extended period of time. That's just my opinion.

Do we actually know for sure what we are hitting, what pathogens we have & if it really works? I don't know... I know we all want to get well but I don't know if we should take all this stuff for extended periods of time without knowing for sure what it is or will be doing.

We may end up worse from side effects & still have the pathogens that are making us ill. Are there any statistics about whether this is actually working? Most of us do not know 100% what we are even treating...

Just my thoughts. I don't mean to ruffle any feathers out there. If there are studies & statistics that this drug is helping - please post them. I'd like to learn.

FYI -

Flagyl Side Effects

http://antibiotics.emedtv.com/flagyl/flagyl-side-effects.html

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Beachinit
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Canefan, I was taking flagyl and doxycycline
and when I paused it after 6 weeks or so the pain on soles of the feet returned, so I restarted the above meds and within 2-3 days the sole pain resolved. So that was my own experience that the flagyl likely has some effect on Bartonella (not listed for this in Dr B's guide though) and does not cure the Bartonella, only temporary pause in the symptoms.

--------------------
Ideas not advice.

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canefan17
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ok thanks

And sparkle... I generally have one common rule of thumb in my treatment and that's... if something makes me feel better then it's doing something positive for me and my immune system.

Flagyl has given me dramatic results already (1 month in)

I don't take it everyday because yes it can be tough on liver.... but that's why I'm monitoring liver enzymes.

But really... what abxs don't pose some sort of risk (especially gut/liver)

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Keebler
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-
While many Rx can have profound side effects, some "reported side effects" of certain antimicrobials could be a herxheimer reaction for those who may have undiagnosed stealth infections.

Also, if liver support and protection are not in place, the liver can be damaged by many of the Rx on the market.

And, for those still (rightfully) cautious of any Rx as one learns more, there's always the question: how else, then, to achieve the desired result? GSE is one other option to consider.

With certain precautions, the side effects of some Rx can be far less dangerous than under-treated lyme.

canefan,

[I know you know all this but posting for anyone new to all this.]

IMO (and that of many LLMDs) everyone on lyme treatment needs to have some kind of support plan for liver & kidneys:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER SUPPORT & and several HERXHEIMER support links, too.

Some KIDNEY support detail, and
-

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sparkle7
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Yes, I agree. I don't really care what people take if it helps - drug, herbs, supplements, whatever... I agree with "if something helps then it's good".

It's just that flagyl is some strong stuff. I hope this works out for you cane but lets see what happens 6 months - 1 year from now to judge if it was a good thing in the long run.

Wasn't there some story back in the 60's about someone who was mentally disabled. He got some kind of miracle drug which reversed it & he became like a genius - then, over time it failed & he was back where he was. Sad, sad story... I think it was "Flowers for Algernon" or something.

I don't mean to be seeding doubt but lets give it some time & see where it goes. I'm glad it's helping.

It took about 9 months but Parastroy did help me feel almost normal again. I stopped taking it & I'm ill again. I'm waiting for more to come in the mail. I tried some of the horse meds but they didn't seem to do the trick & they were too harsh.

The herbs seem better to me since this seems to be a long term project, unfortunately. I don't know if it's in our best interest to stop & start the axb over time. It may just make the pathogens more virulent.

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Rumigirl
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canefan, it's good that the flagyl is helping you!

I was just rx'd it; it's the first time I've been rx'd a cyst-buster. I'll be pulsing it, also, via IV. I expect that there will be some rough patches with herxing. But I am willing to go through that in service to getting well.

Keep us posted on your progress.

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nnecker
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Excellent point about Flagyl sparkle,excellent.

--------------------
nn

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nnecker
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Oh,and another possible side effect of Flagyl(metronidazole)use,it could cause cancer.

http://www.ntp.niehs.nih.gov/ntp/roc/twelfth/profiles/Metronidazole.pdf

--------------------
nn

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tickled1
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Gee thanks nnecker. I was just prescribed Flagyl for C Diff. Not much choice in taking it. BTW, untreated Lyme and Co. is a cancer risk too.

I've read many times on here that Flagyl helped put people in remission.

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nnecker
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Who is talking about not treating Lyme.If you want to use it to kill parasites,I have no problem with that.But if you want to use it as a cystbuster,then you might want to think about it a little more.

--------------------
nn

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sparkle7
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I'm not sure but I think the point that nnecker is trying to make is that none of this stuff is proven. I think it really goes back to testing. If we don't have accurate tests, we really don't know for sure what exactly is making us ill to begin with.

Could be Lyme, babs, bart, viruses, parasites, retroviruses, toxins, allergies, etc...? or any combination/synergy or all of this mess.

I don't believe that the doctors know, either. I know some of them are trying to help & not all are money-grabbers... but they don't know for sure. So, we have to be very careful about what we are being prescribed.

We don't want to end up worse - still ill & with some heinous side effects... So, we have to be informed & careful. I do believe that Lyme & some of our other pathogens are pleomorphic. What actually will kill it - I don't know.

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Keebler
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There is good detail in the many links here.

http://molecularalzheimer.org/

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http://www.lymeinfo.net/medical/LDCysts.pdf

Studies on the Cystic form of Bb

See page 4 outline. 17 page pdf

http://www.lymeinfo.net/lymefiles.html

LYME DISEASE MEDICAL LITERATURE SUMMARIES

Bottom of page, links:

* Cystic Form of Bb: An Introduction

* Cystic Form of Bb & Other Spirochetes: Advanced

Lyme Disease - Survival in Adverse Condition

30 page pdf -- page 17: cystic form


* Cystic Forms of Spirochetes: A Complete Bibliography, 1905-2010

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Ultimately, find the best ILADS educated LLMD &/or LL ND possible.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
nnecker
LymeNet Contributor
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sparkle,you can be sure now,that is the point I am trying to make.

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nn

Posts: 103 | From Northen Neck Va | Registered: Jun 2012  |  IP: Logged | Report this post to a Moderator
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