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Author Topic: Interesting comments about Lyme Disease
emla999/Lyme
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Dr. F of Arizona had some interesting things to say about chronic Lyme Disease.


http://tinyurl.com/ygr9sh2


"Many Pathogens? or Maybe Just One?

Dr. F spends many of his days tethered to a microscope. He prods us to rethink what we know about the bugs that trigger chronic disease symptoms. He thinks the day is not far off when we may recognize that a single microorganism, cloaked in biofilm, is responsible for symptoms of Lyme disease, its coinfections, and many other expressions of chronic disease."

"I don't think Borrelia is the main problem in Lyme disease. We only have one picture of it in the thousands of slides that have gone through our lab. There is something that stains like bacteria, and looks like bacteria in people who are sick.

Almost all the sick patients have evidence of more than one pathogen, and evidence of biofilms. There is more than one pathogen in the biofilm community, but one particular microorganism we've stained may be the main concern."


Six years ago, he established Fry Laboratories in Scottsdale to begin to identify the DNA of this pathogen. "So far, we have mapped three unique genes that make up this particular microorganism," he said.


"These genes are unique to this pathogen; no other entity on earth is known to possess them. As our work progresses, we will be able to further identify the genetic makeup of this pathogen and then develop a reliable test for it."


But if one bug is behind so much chronic disease, why so many different diagnoses and symptoms? "In the biofilm community, there is a soup of pathogens where they all hide. Any one of those pathogens may not be why you are sick.


For example, just about everybody over 35 will test positive for Epstein-Barr virus, but people usually are not sick from it. So not every bug in the biofilm soup is causing symptoms. Symptoms may vary based upon a person's genetics, environment, and pathogen genotype."

[ 10-31-2009, 11:08 PM: Message edited by: emla999/Lyme ]

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canefan17
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I think most recognize this as a possibility.

Wouldn't the antibiotics attack these "other" bacterial strands as well?

Probably.

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Tincup
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Glad he has the basics down.

[Big Grin]

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Hoosiers51
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Until he can get rid of it, he can't really prove it was causing the symptoms in the first place. That is what I don't understand about this. It could just be correlated with chronic disease, but not be the source of the problems.
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coltman
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quote:
Originally posted by canefan17:
I think most recognize this as a possibility.

Wouldn't the antibiotics attack these "other" bacterial strands as well?

Probably.

Yep . I mean with full abx stack there is no real other options to do anything more against bacteria - known or unknown . I wish they figure out how to kill kill biofilms . Otherwise my theory is you have to be on some sort of abx (and be lucky bacteria doesnt get reisistant) for 1-2 years. That is how long it take for new cells to replace old ones (presumably infected). -if you dont have it under pressure it replicates faster than its eliminated

Cell renewal I suspect is the only mechanism right now which gets rid of intracell biofilms and cysts. I think this is one of the main reason stem cells therapy worked for lyme -it accelerated growth of healthy cells, including immune ones and they finished (or supressed) the pathogens

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Marnie
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He makes me FURIOUS!

He doesn't think Bb is the main problem in lyme?

GEEZE!

And he also does not believe in taking the anti-inflammatory, anti-histamine, Mg.

He thinks Mg levels are high in lyme.

Doctors in Romania PROVED that Mg levels DIVE at the outset of lyme.

Mg is normally attached to our ATP as Mg-ATP and it helps to transfer phosphate groups.

Bb has a PKC inhibitor. It is preventing phosphate transfer (actually 2 phosphates).

Bb's Mg transporter gene, transports Mg OUT, not IN.

Beta lactam antibiotics work by helping Mg bind to a protein. IF we have sufficient available Mg.

For you medically savy persons:

"In this model, the ***7-hydroxy group of the β-lactam ring ligates the Mg2+*** with its α-side facing the methyl group of SAM at a distance that would allow methylation of the hydroxyl-group."

http://tiny.cc/KoVMs

Ligates = binds.

Some pathogens have enzymes that metabolize, break down, beta lactam antibiotics which prevents them from working.

So...the combination of a beta lactam antibiotic and a beta lactamase inhibitor = more beta lactam IS available to do its job. Augmentin is one example.

In my book, that is 2 strikes against him.

Let's make one thing absolutley clear:

Bb uses Mn...manganese, NOT Mg, magnesium. It uses Mn for ALL its enzymes.

And absolutely uses Na too. NaCl for motility and Na for its Na-ATPase.

Biofilms can be eliminated via ultrasound.

Do any of you happen to have an ultrasonic jewelry cleaner?

What happens to the water-soap solution?

It is MOVING...jiggling...not a lot, just a little.

We can do that another way...it is called whole body vibration.

This is what biofilms ARE:

"Biofilms are composed of populations or communities of microorganisms adhering to environmental surfaces.

These microorganisms are usually encased in an extracellular *polysaccharide* that

***they themselves synthesize***."

http://www.personal.psu.edu/faculty/j/e/jel5/biofilms/

polysaccaride

a *carbohydrate* composed of many monosaccharide units, for example -- starch, glycogen, and cellulose

Look very very closely at this new patent:

"A method of clearing a polysaccharide ester membrane

employing a clearing solvent comprising a first moiety selected from a group consisting of alcohols, ***ketones***, ethers, ***esters***, and mixtures thereof ..."

First...let's talk about ketones:

"The gist is that coconut oil has a shorter length saturated fat that gets converted by the liver into ketone bodies.

Ketones are used by our bodies for energy and our brains and heart both apparently like ketones a lot.

The tie-in to dementia is that it may be the case that dementia is being caused by our brains losing the ability to burn glucose (the metabolic unit created from carbohydrates) for energy; therefore, over time our brain cells start starving and dying.

In these cases, ketones subvert the busted glucose metabolic pathway and get the nerve cells the energy they require."

http://tiny.cc/Xe76U

Coconut oil contains many medium chain fatty acids - saturated = lots of hydrogen.

And it contains glycerol.

Lots of pathogens have a liking for glycerol.

But when glycerol-monolaurin disassociate -> lauric acid which IS, IN FACT,

a potent anti-bacterial, anti-viral and anti-fungal.

Lauric acid is also high in mother's breast milk to protect her baby.

It is likely all the acids in VCO working TOGETHER that make it so important.

Esp. with caprylic acid which is also a known anti-bacterial.

Now the ketone-acetylcholine connection:

We need melatonin AND acetylcholine...but Bb is "robbing" us of the nutrients in acetylcholine.

It is removing an acetyl group and uses choline to make one of its lipoproteins - phosphatidylcholine.

No acetylcholine = no REM sleep.

Balanced with NREM sleep = melatonin.

These are supposed to alternate during the night as we go from NREM to REM ...NREM to REM...(about 5 times).

Melatonin...then acetylcholine...melatonin then acetylcholine...

Or putting it another way...no ketones -> melatonin...ketones -> acetylcholine...no ketones -> melatonin...ketones -> acetylcholine.

Now you can either try to increase your brain acetylcholine level via Aricept (which prevents acetylcholine from being broken down) or you can request the new AD "nutritional food" called:

Axona. It is available by PRESCRIPTION.

Or you can just take VCO (virgin coconut oil) yourselves as it does the same:

"In neurons, ketone bodies enter the mitochondria to produce a cascade effect on mitochondrial activity that increases mitochondrial efficiency and thereby

reduces the generation of reactive oxygen species.

Ketone bodies feed directly into the TCA cycle in neurons and generate ATP, as well as

***increase pools of acetyl-CoA and acetylcholine.***"

http://www.drugs.com/drp/axona.html

I highly recommend (!!!) you read the above link in full.

Can this "medicinal food" really cure AD and/or lyme?

Give it time!

I think you can speed up the process a tad using OmegaBrite which reduces inflammation...TNF alpha and IL 1B.

OmegaBrite contains very high levels of the ester of EPA (one of the Omega 3s) and it impacts PKC.

Ester + ketone...remember the biofilm solvent mentioned above?

OmegaBrite looks to me to be the "right" blend. ONLY that Omega 3 supplement...non other has their exact blend.

EPA is *potentiated by aspirin* or if you are allergic, Tylenol.

BTW...EPA "helps" the man-made PKC inhibitor, Tamoxifen (to treat breast cancer). Google EPA Tamoxifen if you don't believe me.

What we are doing is this:

Taming down inflammation WHILE destroying Bb via lauric acid and caprylic acids (and the other acids in coconut oil).

These are in coconut oil attached to glycerol.

glycerol-monolaurin...when it disassociates -> lauric acid which is a powerful anti-bacterial, anti-viral and anti-fungal. In addition caprylic acid is ALSO an anti-bacterial.

Reduce inflammation AND/WHILE hitting the pathogen.

Go slowly. Too many ketones = kidney failure. Too acidic = damage to kidney cells.

And do not forget...

PROBIOTICS!!!

[ 10-30-2009, 10:31 AM: Message edited by: Marnie ]

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lou
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Biofilms are sometimes composed of multiple organisms, and could possibly be thought of in this composition as an aggregate: one superorganism which is stable and resists treatment.

So, in this sense maybe you could say we DO have one thing that is causing the problem. But this one thing could be an aggregate. So, it seems premature to rule out borrelia. There is also very little known about polymicrobial diseases.

And if lyme is not the problem, why do we respond to treatment for it, recognizing that antibiotics are not specific? If it is something else, it must be as resistant to treatment in the chronic phase because some of us have had a lot of different drugs.

I think this microscope and other sleuthing that is being done is really a big step forward. But don't think we can draw conclusions yet. What about the people who have had spirochetes found at autopsy? If he is only looking at blood for the spiral form of keets, this is probably not the most productive site.

We are still at a very early stage in polymicrobial diseases. And maybe we should not take current opinions as the last word. Hypotheses evolve.

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seekhelp
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Just out of curiosity, have any of this man's statements turned to fact?
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Marnie
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He makes me furious...Up...read my response in full PLEASE!!!

PLEASE!!!

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massman
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Marnie - what kind of degrees do you have ?
Chem ?
Biochem ?
Physiology ?

Just wondering why you have such a detailed understanding ?

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nomoremuscles
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I agree with Lou.

There are no answers yet -- XMRV, borrelia, co's, Cpn, mycoplasmas, Fry bug/s, worms, some polymicrobial blend??

But finally people are looking.

This is better than anything in the Lyme world in years. I am optimistic (though guarded) for the first time.

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seekhelp
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She's the world's smartest Nurse on Lyme disease Massman. [Smile] Big researcher for personal family reasons.
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Tincup
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lou said.. "If he is only looking at blood for the spiral form of keets, this is probably not the most productive site."

BINGO!

[Big Grin]

And Marnie dear....

Can you stop being so shy and just tell us what you think?

[lol]

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seibertneurolyme
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I think Dr F's research is very important.

However, at this point without definitive tests to prove that Borrelia is gone there is no way to prove or disprove his theories. Just because spirochetes don't show up in the blood doesn't mean much of anything.

Personally I think it is Lyme plus many other things which are keeping people sick. I do think there are multiple coinfections which have not been adequately identified at this point.

Most of us take broad spectrum antibiotics -- we are using a shotgun approach and not a rifle approach. That makes a big difference in how easily it is to eradicate an infection.

As for the biofilm -- I still haven't seen anything specific that says if it is made of calcium, magnesium or lipids or some combo of those things.

It is my understanding that Dr F originally was focusing on the BLO or mystery bacteria but now is more interested in the mystery protozoa -- until both those organisms are identified I don't see how anyone can say either is the cause of Lyme symptoms.

Also, when talking about treatment I don't think many people are thinking about plaque that forms in arteries from inflammation. Is the biofilm that is supposedly floating in the blood just an earlier stage of this plaque?

Bea Seibert

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massman
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The mystery thickens....
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Marnie
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RN - OB many moons ago. LOVED microbiology.

Have been researching this pathogen nonstop for 9 years.

My sis was infected, misdiagnosed (RA) and given steroids.

Disasterous. Bedridden. Horrible pain.

Almost lost her eyesight, 2 knees replaced, very crippled...

I wanted to know WHY all the abx. (including IV Rocephin) did NOT cure her (she followed Dr. B's supplement suggestions too which likely saved her life).

I have well over 3000 MS word files as I have tried hard to learn all I can about this pathogen.

It is EXTREMELY complex.

A lot of information is relatively new...as we learned Bb's genetic code, pathways (Kegg) etc.

It has been like piecing together an enormous puzzle.

Much of it with the help and information from my friends here too!

Biofilm DEFINITION..carbohydrates secreted by the pathogens comes from an "edu"

Yes...it is not plaque which does involve Ca.

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springshowers
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quote:
He makes me FURIOUS!

He doesn't think Bb is the main problem in lyme?

GEEZE!

And he also does not believe in taking the anti-inflammatory, anti-histamine, Mg.

He thinks Mg levels are high in lyme.

This is not a true statement. Where did you get that information that he does not believe in taking anti inflammatory and anit histamine ?

Yes he does not believe in supplementing MG.

But the others? Not correct..


I see this doctor and he has prescribed those to me and has suggested it is key to helping treat and help during treatment for esp during herx time etc.

Not sure what you meant by that and also there is a lot of mis information floating around about him so that can be a problem.

I think he is amazing and supportive and is doing what very few are doing.. if any.. trying to find some answers...

How can you be furious about that?

I just can not agree that anyone should be furious at someone who is trying find answers for us. Agree or disagree.. put that aside.

And maybe once he does some publishing or reports come out it will all come together for you. You can not go based on just what others say. I hope that he will publish something soon because there is too much .. rumor .. type stuff going around..

I hope more people one day will all start looking in the microscope and labs and research and try to figure out this complex puzzle.

Lets all support the efforts..... and not be negative.....

Would if he was not doing anything? We would not even have a ton of the suggestions and ideas and brainstorming that we do..

He is a great asset to all of us...

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bschao
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Hi springshowers,

I totally agree with you so far [Smile] I had my 2nd appt. with him today to get all of my results and I was quite amazed....PM me if you would like to hear about them.

Sherrie

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Lymeorsomething
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Dr. F is long on suspense and short on conclusions.

We need published articles that unmask the "one particular microorganism" he refers to.

Almost anyone of us can form loosely based hypotheses like the one above.

It doesn't instill confidence that he is looking for Bb in the blood of patients who may have been taking long courses of abx near the time of the blood draw.

Why would there be evidence of Bb in such cases?

I'm not condemnatory of his efforts. I hope that he does make a breakthrough. I have had lab work done through Fry as well.

I'm just pointing out that science needs to be clear and not one big sprawling gray area.

By the way, Marnie, I've got some coconut oil. It better work [Smile] j/k

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"Whatever can go wrong will go wrong."

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lou
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Science needs to be clear and not one big sprawling gray area?

This is complete ignorance of the scientific discovery process. Did you not learn anything from science courses in school? Or not take any? A statement like this should not be posted by anyone with a grain of sense.

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Marnie
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I said...

" he also does not believe in taking the anti-inflammatory, anti-histamine, Mg."

I did NOT say he is against all anti-inflammatories/anti-histamines,

He is just against THE most important anti-inflammatory/anti-histamine...which IS Mg.

Scroll down to this:

From The Public Health Alert: 'The Borrelia burgdorferi Biofilms Protocol'

here:

http://www.lymeneteurope.org/forum/viewtopic.php?f=6&t=2602

Do you know how our beta lactam antibiotics WORK?

They help bind...get this...Mg onto a protein.

Provided there IS sufficient Mg available.

If not...the body will find a way.

There is considerable Mg in RBCs.

If/when they are lysed, their Mg is released.

Mg INactivates an enzyme called HMG CoA reductase which shuts down the cholesterol pathway...which IS the pathway Bb takes to BUILD his cell walls.

Magnesium is vital to us making a "healthy" antibody to Bb's OspB. Without sufficient Mg, the antibody is "damaged" (fab). Documented a zillion times...Pubmed. Mg restores those antibodies.

When Bb invades our own defense cells and goes IN the cells, Bb, with its PKCB2 INHIBITOR, triggers the cells to send fast to the surface a receptor...CB2...a call for help.

Our own mAB (monoclonal antibody) locks onto that receptor - CB2.

When it does, this triggers an enzyme called alpha hemolysin.

That enzyme breaks down RBCs...which releases hemoglobin, Mg, etc. Hemoglobin is then broken down and releases Fe (toxic when it is not bound to a protein), etc.

That magnesium helps build MORE healthy antibodies and prevents Bb from building his cell walls via triggering the cholesterol pathway.

Alpha hemaglobin also breaks down liposomes (which make up lipoproteins...like those in Bb's cell walls).

Dr. Fry's comment:

"I don't think Borrelia is the main problem in Lyme disease."

Is like saying Usama bin Laden isn't the problem, it is his soldiers/followers and their terrain.

Give the VCO TIME to work.

OmegaBrite, VCO, probiotics.

Tame down inflammation. Hit Bb. Keep a healthy gut.

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Lymeorsomething
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Lou, where is the published research? That's my essential point.

Hypotheses need to be backed up with an adequate amount of facts. We have not seen this from Dr. F yet.

I can gaze into my scope and make all kinds of statements to the effect that Bb is not the main problem in Lyme disease. Who would believe me?

Receiving such information through a microbiologist does not make it more credible necessarily unless we have clear evidence.

Looking at a bunch of slides and saying we see this more is meaningless because there are so many other variables at work in these disease processes.

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

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nomoremuscles
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Lymeorsomething,

What facts are you looking for?

As far as I know these bugs have not yet been identified, so there are no facts to be gotten there. None that I can see, at any rate.

If you mean evidence that this bug (or bugs) are the main cause of our illnesses, and that a specific trx will make us get better -- well, I'm sure we're all looking for that. But I don't see any way of proving that any time soon. Do you?

If so please explain how? (Not being a wise *** here, I just don't know how it would be possible.)

And if not, are you suggesting he should keep his mouth shut until all the answers are spelled out?

I for one think that whatever he learns and shares is a positive thing, as it helps LLMDs with non-responding patients to think in other ways, to try other treatments, and maybe by doing this someone will stumble on the mother load.

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Marnie
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Have we identified all Al Qaeda memebers yet?

Do we know though, who the LEADER is?

Yes.

He is Osama bin Laden.

Bb is Osama bin Laden. Go after HIM!

Dr. Fry and I strongly disagree about Bb.

He says:

"I don't think Borrelia is the main problem in Lyme disease."

I think Bb IS the main problem in lyme disease.

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Lymeorsomething
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NMM, I'm not advocating that he stays quiet. I'm just frustrated by the consistent level of vagueness that he brings to his work.

He is essentially saying Bb isn't the main problem but other things may be. Sound familiar? The IDSA could have issued the same statement.

So if we are on the one hand going to bash the IDSA for such statements and on the other offer kudos for similar ideas from Dr. F, doesn't that ring of hypocrisy?

We are willing to give up on our chronic lyme arguments simply because such statements are issued through Dr F? Mind-boggling.

We might as well rename the forum "one-particular-microorganismnet."

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"Whatever can go wrong will go wrong."

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Marnie
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HIV patients develop other infections besides that virus.

HIV and Lyme make the terrain very welcome for other pathogens to invade.

Get rid of #1.

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nomoremuscles
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Lymeorsomething,

The IDSA comparison does not work.

It does not work because they, the IDSA, are saying that there is NO pathogen involved in our illness. They are saying that we are suffering with medically unexplained syndromes of various stripes, including one, according to a particularly stupid and fidgety speaker, resulting from childhood trauma and sexual abuse.

I don't see how that can be seen as the same as a microbiologist saying there may be a specific bug causing the bulk of the trouble (and that it may not be borrelia). Whether this researcher is right or not is something else entirely. He may be right, he may be wrong. I don't know. Most likely he'll be somewhat right, in that he'll be right for a subset of patients but not all. (Though, I wouldn't count him out.)

But researching microbes in chronically sick people, and trying to determine which are causing illness, is not in any way comparable to what the IDSA is doing. Not even in the same galaxy.

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springshowers
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OH . I so disagree.

But oh well.

HIV Patients die of Toxoplasmosis.. in the end..

So.. The beginning is not the end.all.

Got to keep that in mind..and all the infections we get ... with or before or after lyme..

are all things to consider..

And nobody really knows..... for sure.. everything.. I Think we all try to keep track of all the infections we have and address which ones we feel are causing the biggest problems but also hit them all..

All Dr. F is saying is that he thinks most of our symptoms and suffering may not be from the lyme Bb infection.

For some.. He is most likely right.. Maybe not for all.. Maybe for all....

He is just giving his opinion for now.. and working on proving it.

Again. arent you just glad someone is working on some of this.?? I am..

GOsh people here can be tough...to please..

I am just happy ANYONE is looking at this disease or causing for people suffering.

If it leads us to more answers .. no matter what road it takes.. and no matter how many curves and ups and downs.... I am glad..


I really am glad he does what he does..

Who else do you know is working on trying to study your blood and groups of patients to see why we might no be getting better from lyme treatments or what else is in the puzzle that might be causing problems...

Its all to help us..

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Cold Feet
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EMLA, thx for starting this post. I've been wondering about this question for some time myself!

Marnie: the jury is still out on magnesium in terms of biofilm formation; but calcium is more than suspicious in terms of helping them form. And beta-lactam antibiotics may help clear Bb initially; but they also will drive Bb to change from spirochetes into other forms, right? If the patient only has that one antibiotic (and doxy, for that matter), they'll be lucky if they stay well long term. That's my opinion - but a firm one. But I DO agree with your concern about Bb - I also believe it is a clever assassin; a Trojan horse that punches many holes in the immune system allowing other pathogens to set up shop. So good point...

Ultrasound may or may not break up complex, toughened polymicrobial biofilms. Besides, these biofilms are dispersed throughout chronically ill patients' bodies; and this technology is decades away from being deployed clinically - why bother giving false hopes? And I agree with you about coconut oil's benefits, but it's not going to cure anyone of anything!

Lou: you really nailed it (for me any way); what you said and how you say it. I couldn't say it better.

Bea: My understanding is that biofilm can break off in either early or late stages of formation and flow to other parts of the body and repopulate that new seeding area with fresh, complex DNA. This has been documented for quite some time now, but forgotten for some odd reason. So I am glad that there's a renewed interest in biofilm as a public treat to health; and perhaps now because of MacDonald/Sapi, its role in chronic disease!

Nomoremuscles (et al): You're right - at least Dr. F is looking! Hey, any progress (as confusing as it may be) is OK with me.

--------------------
My biofilm film: www.whyamistillsick.com
2004 Mycoplasma Pneumonia
2006 Positive after 2 years of hell
2006-08 Marshall Protocol. Killed many bug species
2009 - Beating candida, doing better
Lahey Clinic in Mass: what a racquet!

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Lymeorsomething
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NMM, I disagree. It works on some level. I think that many on the board have labored to show Bb's ability to dodge diagnostic tools and available treatment options.

Now in one breath we're saying it may not be Bb after all and no one bats an eyelash. The difference between a sketchy syndrome and an undefined pathogen is negligible considering such a pathogen may be completely innocuous or unrelated to manifested disease states.

Some type of correlations would have to be made between variables.

635 slides that looked like x correlated with patients who felt crappiest. Or 300 slides that looked like y correlated with patients who felt somewhat crappy. And so on...

We have made the comparison of lyme with syphilis and its related complexities before but now we're ready to wipe the slate clean and suggest all our troubles may rest in another vaguely defined pathogen. (Who knows? It may prove true but I'm surprised by the lack of resistance here).

For all we know, this pathogen may simply represent a secondary infection--like EBV, mycoplasma, etc.--that takes advantage of a lyme-weakened immune system.

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

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nomoremuscles
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Lymeorsomething,

Okay. I see where you're coming from. I still don't agree with the IDSA analogy, but I see what you mean.

I do agree here: I am also unwilling to throw away decades of research demonstrating borrelia's ability to evade defenses. There is simply too much there. But that does not mean that I think the riddle of chronic Lyme is anywhere close to being solved.

There is much evidence, reams in fact, that point to borrelia, that's true, but there is much clinically that points to the co's. And now this XMRV is very interesting. So when a doc, using his own time and money (for the most part; yes, I'm aware those slides are not free), takes the blood of the sickest patients, over a decade, and looks for commonalities, and then contrasts the findings with the general public, the healthy public ... well, I am willing to listen politely to what he has to say.

I think it is too early in the game to close our minds to anything as far as possible bugs go. There are likely many yet-undiscovered bugs (tickborne and otherwise), implicated in chronic illness, and since many of these illnesses overlap in giant ways, it is not unreasonable to think -- at least not to me -- that game-changing discoveries, with regards to specific microbes, are going to be made. Still, this is nothing close to the IDSA position.

At this point I agree that we don't know which bugs are running the show, and which are along for the ride in a compromised immune system. Or, as Lou said above, it may in fact turn out to be a poly-microbial stew wrapped in a nasty biofilm, and acting in cooperative way, that's pulling the strings. Who knows?

All I can say is that I am glad for Fry, and I am glad for Mikovits, and I am glad for Sapi ... and for all the rest. Because these are people who are going to lead us out of the desert.

Well, maybe not us, but the next generation.

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Amanda
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In all fairness, I have read and heard many of our LLMDs make statements that seemed way out there. (I'm a scientist)

The fact is that many of the LLMDs are willing to treat us becuase they were already inclined not to go with the majority of the medical community. This means the doctors trying to help us are likely to come up with ideas that seem out there.

Also, many of the statements made as to things that are supposidely highly effective or important to Lyme have not helped everyone. As much as I admire and think highly of Dr. B, his protocols did absolutely nothing for me or some other lyme patients I know. In other cases, he has saved lives.

I tried the cocunut oil/lauric acid/ MG and so on, mentioned above, and it did nothing for me.

Everyone wants a straightforward protocol for this disease. This is the main problem with the IDSA (and western medical paradigm in general), they can not grasp that you can't cure some diseases with three or four simple recipies.

TBI disease is highly individualized, and the right doctor and protocol are going to vary.

SUCKS, but until we add another 200 million a year to do research, thats where it is.

ITs hard for me, but I have to tell myself to be open to some of these ideas, even though they are not based on a scientific method per se.

In Dr. Fs case, the man is trying to do research, and treat patients, and run lab tests all at the same time. I personally think it doesn't make sense to expect to find lyme in blood samples, since a big part of why its hard to treat for chronic cases is that it stays out of the blood, and goes dep in teh body. But God bless him for finding out a lot of other things in our blood and generally contributing to understanding the disease. Its be great if he could just look at 50 "healthy" peoples blood, as a comparison...

Ok, I'll stop now

--------------------
"few things are harder to put up with than the annoyance of a good example" - Mark Twain

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Amanda
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Oh, and just cuz maybe it might be interesting for some of you...


I spent a small part of my career trying to figure out how to seperate biofilms from plants and algae. And let me tell you, it was friggin impossible to try and remove the biofilm, without destorying the plant or algae that made it. There was one wetland plant that made a biofilm over part of its new growth. And nothings, I MEAN ABSOLUTELY NOTHING would attach to that part of the plant. The plant's biofilm acted like a shield, I could not find a single bacteria grwoing in that film! And this was in south Florida, under warm nutrient rich conditions! I tried to sonicate (vibrate) the biofilm off the plant, and all that happened was that it destroyed the cells of the plant, but the slimy biofilm was still there.

I personally am hopefull about the enzymes they recently discovered exuded by marine sponges. But it will take a while....and sorry to say folks, exzymes tend to be very specific, so maybe it works for some lyme, maybe not others...

--------------------
"few things are harder to put up with than the annoyance of a good example" - Mark Twain

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Cold Feet
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Amanda, really well said indeed! Don't stop!Thanks for your interesting perspective. [Smile]

And a bit of an apology to Marnie: the Sonicare (ultrasonic) toothbrush is said to break up oral biofilms. So I am eating crow, somewhat, with my slimey mouth. Until I use my Sonicare in a few minutes...

[lick]

--------------------
My biofilm film: www.whyamistillsick.com
2004 Mycoplasma Pneumonia
2006 Positive after 2 years of hell
2006-08 Marshall Protocol. Killed many bug species
2009 - Beating candida, doing better
Lahey Clinic in Mass: what a racquet!

Posts: 828 | From Mass. | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
   

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