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» LymeNet Flash » Questions and Discussion » Medical Questions » Lyme patients hope Hopkins work will aid guidelines fight

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Author Topic: Lyme patients hope Hopkins work will aid guidelines fight
Tincup
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The article below was published in the Star Democrat (front page), the Kent County News and the Record Observer last week, all Maryland newspapers.

Please note- titles on the articles are sometimes different for each paper - this is the version from the Kent County News.


The Kent County News


Lyme disease victims eye beneficial study.

By Steve Nery

BALTIMORE Lyme disease patient advocates are hopeful that new studies on especially resistant forms of bacteria at Johns Hopkins could help lead to less restrictive treatment guidelines.

The November issue of the Johns Hopkins newsletter contains an article about research at the Bloomberg School of Public Health on bacteria that can morph into the "L-form" bacteria that lack cell walls that are resistant to antibiotics.

They include Borrelia burgdorferi, the bacteria that causes Lyme disease, as well as the bacteria responsible for anthrax, syphilis, tuberculosis, food poisoning and stomach ulcers.

The Infectious Diseases Society of America recommends the use of an antibiotic for a maximum of four weeks to treat Lyme disease, but many patients, especially those not diagnosed swiftly following a tick bite, report effects that can continue to linger for life.

Droves of Lyme disease patients spend thousands in out-of-pocket dollars to receive treatment from the few doctors that don't follow the IDSA guidelines.

Ying Zhang, Yanking Yang and William A. Glover authored a study published last month in PloS ONE. The researchers used modern molecular tools to learn more about the origin and biological functions of the L-form bacteria.

Researchers have known about the existence of this form of bacteria since the 1930's, but little beyond that.

Zhang, a professor of molecular microbiology and immunology at Bloomberg and the senior author of the study, said in the newsletter that the bacteria take on the L form in response to stress caused by antibiotics.

The wall-less cells cluster together in the shape of a fried egg, which makes them ever more resistant to antibiotics.

The team successfully cultured E. coli L-form bacteria and discovered genes that were linked with the inability to grow in the L-form.

These L-forms of various bacteria may be the underlying reason for chronic diseases such as rheumatoid arthritis, according to the newsletter.

"It is possible, with our discovery of the L-form genes, to develop new antibiotics and more effective ones that can be used with current ones as well as new vaccines to ... allow these forms to be eliminated by the immune system", Zhang said in the publication.

Patients with chronic Lyme disease hope new research will change the Infectious Diseases Society of America's Lyme disease treatment guidelines, which are under review as ordered by Connecticut Attorney General Richard Blumenthal.

"Hopkins proving L-form bacteria is not killed by antibiotics while in this form shows that the chronic and debilitating symptoms, disability and death can all be related to ongoing infection in those that have been exposed", said Lucy Barnes, director of the Lyme Disease Education and Support Groups of Maryland.


MY NOTE- **In Kent County, especially, some doctors are still using the "one dose of doxy" therapy when they see a patient with a tick bite and Lyme rash- UGGGGG- and many patients with continuing symptoms are put on steroids to try to control their pain. Double UGGGGG!

I see so much destruction and pain in our patients living in that area because of these barbaric practices.

--------------------
www.TreatTheBite.com
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www.MarylandLyme.org
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JamesNYC
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My imagined IDSA response:

How can L-forms cause chronic lyme if there is no such thing as "chronic lyme"? Everyone with symptoms after 4 weeks of abx have "post-lyme syndrome". And L-Forms are not implicated in PLS. See? Perfect IDSA (non)sense. [dizzy]

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lymie_in_md
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How could this study be used to influence the medical review boards to put end to these barbaric practices your note describes?

--------------------
Bob

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Tincup
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James....

Yes, you are right... they will have to scramble at Hopkins to explain this "release" of information because it does slap Hopkins ID ducks in the face and counters their "no continuing infection" theory.

It breaks down that wall even a bit more. Chip chip here and chip chip there.

I don't know how they will still be able to counter claims we are still sick after the minimal cost-effective IDSA protocol and it CAN'T be because of active infection.

They will try, but their foundation is steadily crumbling .. and when the sledge hammers used in this war come from their own Institute... well OH MY, I wouldn't want to be THEM.

And keep in mind Hopkins is home to the "official" IDSA spokesman, as well as their IDSA Guidelines "editor" (one in the same) and an author.

Even Wormser was a Hopkins attendee at one time... and Bumsteere has been there to help "educate" Hopkins ducks in the past. There is even a pesky Hopkins/IDSA wanna-be who has claimed in a Journal article that he was from Hopkins.. and he wasn't.

[Big Grin]

Lymie... Not medical review boards as such- like in each state, not exactly...

It is the IDSA Review Panel that will soon be coming out with a decision concerning the IDSA Guidelines.

If they uphold the theory of NO infection as the cause of continuing symptoms and don't make changes in the Guidelines that this is possible.... they sink deeper in the muck.

This Hopkins report adds to the evidence that it can be active infection causing our symptoms, weakening the IDSA's case.

We hope they will correct the Guidelines to reflect this situation... and when their own IDSA supported institutes publish this stuff in opposition to their reported stance... even their own colleagues have to stop and say "huh?"

[Big Grin]

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Allie
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In my opinion, they will change the guidelines (how much I would never guess).
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Tincup
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Well Allie... good for you!

So far, you are the only one who thinks they will change them (that I've heard from).. besides me!

I think they MUST know the backlash they would get (a lot from their own people) by NOT correcting them.

That choice, if they picked to not change them, would be horrendously bad for them in light of all the evidence presented proving what they are saying just ain't so.

Not to mention, we happen to be right!

[Big Grin]

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Allie
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Yes Tincup. The time for us is coming. You can't ignore credible science. That Brorson et al paper published in PNAS and this work out of Hopkins really show the plausibility of LD to persist.

There were some powerful presentations at the hearing too. And all the written submissions by ILADS and others.

Lots of good stuff for the panel to work with.

And really, at this point, the appropriate changes would be using wording like "the science is uncertain so defer to clinical judgment". They will do that!

They have to.

[Smile]

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JamesNYC
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They ain't gonna change them unless it's at gunpoint. If they did, they would have to admit they were wrong, stupid, exclusionary, etc.

Where are the lawyers when you need 'em?

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Tincup
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Allie said.. "Lots of good stuff for the panel to work with."

I agree. My thought is they had to get carriers to haul the amount of scientific papers they got around.

[Big Grin]

James said.. "Where are the lawyers when you need 'em?"

Do you mean for IF they change the Guidelines or IF they don't change them?

[Big Grin]

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coltman
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Well even if the information of persistence will get into mainstream it frankly doesnt do us any good short term. It was already known for long time about persistence of borrellia, there are dozens of papers about that starting 1990. It is not a breakthrough of any kind .

We already knew all that .What we need is solution for it . if it takes decades to get this info (just info) in mainstream we still have to wait for actual effective treatment .And mainstream will do nothing about it as usual - since 1950s it was known about l-forms. And results so far? -absolutely nothing!

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Tincup
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You are right! If they decide to change the Guidelines tomorrow it could be 20 years or more till we see any changes at the patient level.

My grandkid(s) would be grown by then... and hopefully with the information we ARE getting out there now, they won't be suffering too and will be treated immediately.

(Bless ALL the children... those we work to try to save now... and those who will become ill in the future.)

So what's your plan, coltman? Just said that cause it rhymes.

Is there any way you know of that can push the issues forward any faster? Any way you know of to cut through the red tape to help us any quicker?

Any Lyme literate folks you know of with nothing else to do but devote all their time to these volunteer projects? Any one that has endless funding willing to donate to our cause?

You are right... we need major help here. But, because that hasn't happened...

The way I see it we can just quit and walk away (and boy am I tempted with that idea every single day)...

And let the innocent folks keep suffering with no hope in sight... (the reason I don't)...

Or keep plugging away the best we can with the limitations we have and hope more will join in and work to HELP us make things better...

For the children's sake.

[Big Grin]

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sutherngrl
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To me they would really look stupid if they didn't change the guideline.....not that they don't look stupid already! HA!

What I imagine is that they will change them ever so slightly just to say they changed them; but it will only do good for those who get treatment immediately after a tick bite. Like instead of treating for 2 to 4 weeks, they will treat for 6 weeks. This was the change suggested by Wormser in front of the IDSA review panel.

And even if they do change them drastically, it will take years to train all our ducks, that is if they want to be trained on how to treat LD. It is all a very slow process.

I just hope for future generations that a positive change will be made. Its very un-ethical how they are allowing people to suffer.

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coltman
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quote:

So what's your plan, coltman? Just said that cause it rhymes.

Is there any way you know of that can push the issues forward any faster? Any way you know of to cut through the red tape to help us any quicker?

I d think the only realistic way to help move issue faster is have independent research institute for TBD. Like this CFS institute (where they did work on XMRV).

It always a problem of funding though. You need major donor to have the thing rolling and continuing support. I dont see how obscure fringe diseases like TBD can get started. CFS had some rich parties personally interested.

And like many foundation avoidance of corruption is not guaranteed. national MS society is good example - over 2/3 of their huge (several hundred millions) budget was spent on their own salaries and maintenance. Their major consultants are same guys who are in mainstream , and their results so far - ABSOLUTELY NOTHING. Even that vascular MS theory was done by a single guy without any support from all those MS societies (who now fight that idea!)

Cancer is just another example. They keep looking and funding same people and same theories which so far produced nothing but short term fixes (at best- but mainly toxic drug regimens and invasive surgeries and therapies)

AIDS is another. Not saying those problems are easy to solve , but if they are not looked into from different angles they will never be solved - its like this anecdote where drunk is looking for keys under post lamp, not because he lost them there but because there is more light. -Same with mainstream research they keep regurgitating same crap over and over and over, not concerned with results, but mainly with keeping the status quo and funding

So yeah I don't hold too much hope unless some truly smart and persistent scientist makes breakthrough on his own

It is much more likely there will be a radical breakthrough in different fields which will make mainstream medicine obsolete (because certain other fields do not have all the burden and drag medical and bio research have

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Shosty
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But the research is basically proving that long-term antibiotics don't work, since the bacteria can change to the L-form, and are then resistant. If I had read this 8 years ago, I would have gotten off meds faster!

Can someone explain how this new research can change the guidelines in favor of longer use of antibiotics?

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coltman
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quote:
Originally posted by Shosty:
But the research is basically proving that long-term antibiotics don't work, since the bacteria can change to the L-form, and are then resistant. If I had read this 8 years ago, I would have gotten off meds faster!

And then what you use?

quote:

Can someone explain how this new research can change the guidelines in favor of longer use of antibiotics?

Not all abx are equal some do have intracell penetration and some l-form action. (there is very limited research about l-forms but it exist and in some cases abx do work vs l-forms). It is many ways similiar to tuberculosis treatment . It was considered "abx resistant" till one guy tried abx in combination . Thus modern abx therapy was born (long term combo abx)

Though there are MDR TB strains now days now

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lymie_in_md
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that is also why LLMD's have protocols that include the immune system. The immune system is the ultimate warrior against pathogens not just the ABX you take. ABX doesn't work against viruses, some parasites, l-form or cyst form. I think we forget to include this very important piece of the puzzle. But the LLMDs don't forget, I'm not sure what the ducks do (probably just quack).

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Bob

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Amanda
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AS a former scientist myself, let me assure all of you that once a scientist obtains a certain level of prestige and grant funding for their expertize, it is unlikely they will change their minds in light of scientific research that counters their own. (although to be fair, there are some that do)

We all like to think that scientists are immune to dogma, but the fact is the more powerful and influntial the scientist, the more likely they are to resist research that counter their own, since it essentially means you admitting you were on the wrong track, which isn't a bad thing, but it does mean you will are not the top dog anymore. It just human nature that people who have power, of any kind, will not relinguish it easily.

And especially now with the way science is set up, with patents on everything, scientist don't share all their information like they use to, which slows down progress because scientists aren't forced into situations with other scientist with opposite view points nearly as often as in the past.

that said, I do think that the IDSA will make some changes to the guidelines.

My guess, (and this is purely conjecture on my part) is the the IDSA is spending more time discussing the legality of the guidelines and not the science. If they change the guidelines, then they are admitting they ignored research and they might get sued or other legal troubles. If they don't change the guidelines, in light of all the evidence presented on a public forum no less, then they are being reckless and they could get sued for that. So they are probably trying to figure out the best legal angle.

Basically, unless they handle it just right, their goose is cooked.

Duck supper anyone:)

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

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coltman
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quote:
Originally posted by lymie_in_md:
that is also why LLMD's have protocols that include the immune system.

Really? Havent seen single lyme protocol addressing immune system. could you give an example please?
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Tincup
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Shosty said.. "Can someone explain how this new research can change the guidelines in favor of longer use of antibiotics?"

You do know the "new" research is actually "old" stuff. But the point is now that Hopkins is saying it is so.... when for years they have fought this concept... it is opening up the doors to let more light in on the situation. That said...

No more can Hopkins say there is NO reason to treat patients because it can't be an "active" infection and it is "post-Lyme" syndrome. They've been getting away with that for years on end and only will treat patients "symptomatically", ignoring a potential underlying infectious process.

And now, instead of doxy only- the one pill cures Lyme theory still goes at Hopkins, by the way....

They will have to consider extending the treatment to address ongoing infections.

And/or adding another antimicrobial to the mix to attack the other forms.

This, in a perfect world, should help us counter insurance denials, allow us more antibiotic treatment and various other treatments.

Remember they have a BIG list in the IDSA Guidelines of "Not Recommended" antibiotics, which we know can help us, but which insurance won't cover because the IDSA states they are NOT recommended.

Hope that made sense? It's suppertime and me tinks me needs some food! Gotta have food before we can have the ice cream!

And AMANDA... I agree! Good points about the "legal issues".

But alas, no duck for supper tonight.

As a matter of fact.. we ARE having the other thing you mentioned.... goose!

[Big Grin]

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Tincup
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Oh.. coltman.. the man with the plan.

Good thoughts! It is a tuff thing we are facing and I agree with your assessment. The research though.. in MY opinion... is out there and has been.

It is just that the IDSA is not "accepting it" and denounces it or rejects it outright... and tells others to do so also.

I KNOW we have enough to have ... at a minimum... "reasonable doubt"... and have enough research to be able to prove they MUST stop denying that active infection COULD be the cause of chronic Lyme disease.

Gotta go ... the hunters just hollered up the stairs.... "where's the goose?"

[lol]

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jklynd
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Speaking of the TB Dr.earlier mentioned who introduced the "multi-drug cocktail" for it....

An obituary,unfortunately,but pays tribute to him as developer of the 3 drug "cocktail".He also put up with much disbelief,until he proved the "naysayers" wrong.(on a big scale)

Shows what "out-of-the-box" thinking can do.Thought you'd find this interesting..... Maybe something along these lines is needed for treating resistant forms of Lyme.

They've got the treatment for TB now so much down to a science that in some cases,(the very resistant ones---in prisons,the homeless,etc.) a Dr. or nurse has to verify that you've actually taken your ABX.--Wouldn't that be great for Lyme?

Thought you'd find this interesting..... http://www.nytimes.com/2009/11/20/health/research/20crofton.html?hpw

Joe

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lou
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The fact is that the lyme naysayers have ignored and lied about a lot of evidence already, to have taken the position they did. And even against their own previous views. So, it is obvious that the lie campaign is the most successful one in terms of getting grants, positions, etc.

When the reward system stops rewarding fraud and incompetence, then things will change

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lou
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Should have congratulated Lucy for getting this into a paper.
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lymie_in_md
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Sure coltman -- A Dr formerly of SC using glutathione IV. I know of several patients. Probiotics, you know of single LLMD whose not promoting them. BTW, there are great many ducks not providing probiotics. Support to the adrenals, also support the immune system. Any supplement involving the endocrine system. How about vitamins, very few PCPs now anything about there use, such as magnesium IVs. These are just the easy ones, there are just too many to mention. All the LLMDs are aware of working the whole problem much better then a PCP.

ABX is just one part of the solution, not the whole solution. That is what makes LLMDs more special then just some DUCK quacking in an office. LLMDs are trying to use every lever to help the body get well.

Hope that helped coltman...

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Bob

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