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» LymeNet Flash » Questions and Discussion » Medical Questions » Three Cheers for Bad Information?

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Author Topic: Three Cheers for Bad Information?
Tincup
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Sometimes you have to wonder how all these things listed below can be used by anyone to treat anything when the treater appears to be dimmer than gnat in a mud puddle, when it comes to Lyme.

[lol]

The author claims himself to be...

"**qualified to diagnose and treat ANY injury or illness**

utilizing a wide variety of treatment techniques, including needle stimulation, diathermic heat stimulation, electrical stimulation, manual physiotherapy, herbal prescription, nutritional or nutripharmaceutical prescription, dietary counsel, myofascial release, trigger point needling, joint mobilization, cold laser, ultrasound, instruction in therapeutic activities, correction of postural mechanics, and other techniques."

YET, he has NO clue about Lyme disease, the rash, the tests to use, the accuracy of tests, or even how to SPELL it properly, etc. He even refers to Johns Hopkins and the American Lyme Disease Foundation as if they were good sources for information on chronic Lyme! HA!

Quotes- "A patient that suspects that Lyme disease is the cause of Chronic Fatique Syndrome should assess the initial presentation to see if actual signs and symptoms were in their history that would indicate the possibility of Lyme disease as an initial cause.

These include a *moving* red skin rash seen in about *90% of cases* ..."

"An optimized PCR test (polymerase chain reaction) can be ordered to **definitively determine** whether the spirochete is present in the body."

"If this analysis is carried out, the patient can be reasonably assured that *Lyme disease is present or not*."

"Even if Lyme disease has been definitively diagnosed in the past, the chronic fatique syndrome is unlikely to be linked to a present infection, and attempts to treat with this simplistic approach are misguided."

More stuff here....

http://www.acupuncturesf.com/articles/chronic-fatigue.html

[ 05-29-2011, 07:49 PM: Message edited by: Tincup ]

--------------------
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www.LymeDoc.org

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map1131
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Tinny's just venting gang. She knows we know how frustrating it is to hear stupid, day in and day out.

We all need to let off some steam about all this. Sometimes I don't think anything has improved since '99 when I got "sucked"
into this nightmare.

Tincup wants the traditional medical establishment to all get it and find a cure with the proper medication.

I want both traditional doctors knowing the truth about this horrible illness and I want alternative treaters like an acupuncturist to know what the majority of his chronic ill patients are suffering from.

The Root Cause of This Endless List Of Symptoms we all call LYME & CO.

I don't think this is impossible. We just need to go where our heart is. Traditional or alternative?

Pam

[ 05-29-2011, 05:55 PM: Message edited by: sixgoofykids ]

--------------------
"Never, never, never, never, never give up" Winston Churchill

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sparkle7
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People in healthcare are not gods. Many on all sides of the healing profession do not know how to deal with the kinds of complcated illnesses we are facing these days.

They are just taking educated guesses. That's all that can be expected of them... Bottom line is that they do not know. Even the "famous" LLMDs do not know.

I would contact him personally to explain any grief about his perception of Lyme. I don't think he's ignorant. His write up of CFS was pretty thorough.

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Tincup
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Hey Sparky,

You said. "I would contact him personally to explain any grief about his perception of Lyme. I don't think he's ignorant."

That's wonderful!!!

Have at it, go for it! And please post your letter here when done. We need all the help we can get when addressing bad information.

Thanks for taking time to research it, provide him documentation to dispute his points and compose the letter.

Good deal!

[Big Grin]

--------------------
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www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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River,

You are right. Someone should contact this person and provide the facts about Lyme for him before he really hurts someone.

Glad Sparky jumped in to do it!

I would, but in the past two days I've written (with documentation after researching for hours) to 6 different places to try to educate them on their inaccuracies. That's on top of working on several other Lyme-related projects.

I sometimes post bad stuff here because I believe people need to see some of what we are dealing with- the junk that is out there - and let them know, behind the scenes, we are fighting for them and stay incredibly busy educating everyone we can by, in part, addressing this kind of bad information.

Thanks for your comments. You hit the nail on the head!

[Big Grin]

--------------------
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www.LymeDoc.org

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randibear
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well even a blind squirrel finds a nut once in a while....

maybe he's good at other things...uh huh...

--------------------
do not look back when the only course is forward

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Tincup
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Map,

Good thoughts. I agree.

I think you might know? I don't remember bashing a natural doc in the past? Ever? Most of the time they are fine. I do hit ducks as often as possible though.

[lol]

But bad info is bad info... and someone needs to address it if they can.

And so you know... I consider myself an "equal opportunity" basher! HA! Anyone saying things to hurt people, especially our members and our doctors, gets an equal sized boot in the backside.

But must say I do believe the ducks get the brunt of the big boot, so it is sorry to see a natural dude get this so far off track and need a kick in the pants.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Randibear,

[lol]

I like that! HA!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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map1131
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Tinny, I know you don't bash anyone but the quackers my dear. You don't give a rats arse if they have MD or any other initials after their names as long as they can carry on a half way intelligent conversation about lyme & co.

Tincup always does what's good for the few LLMD's of our world. I understand your battles.

Three cheers for literacy, lyme literacy that is.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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AlanaSuzanne
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Tincup's quote from the practitioner: "A patient that suspects that Lyme disease is the cause of Chronic Fatique Syndrome should assess the initial presentation to see if actual signs and symptoms were in their history that would indicate the possibility of Lyme disease as an initial cause.

These include a *moving* red skin rash seen in about 90% of cases, headaches in about 31%, joint pain or inflammation in about 28%, peripheral neuropathies related to nerve root inflammation in about 11%, and cranial nerve palsies, or facial paralysis, seen in about 4.6%.

An optimized PCR test (polymerase chain reaction) can be ordered to definitively determine whether the spirochete is present in the body. Other tests are less definitive, and screening enzyme immunoassay tests may be falsely negative in about 39% of cases, and reference immunoblot tests falsely negative in about 31%."

Aside from grammatical errors made by the auther (s/b a patient *who* instead of *that*), has anyone here ever heard of a moving rash seen in 90% of cases??

And notice how the practitioner states that the patient "should assess the initial presentation to see if actual signs and symptoms were in their (another grammatical error--s/b his or her) history that would indicate the possibility of Lyme disease as an initial cause."

Geez, here I am thinking the "practitioner" is the one who should be assessing things. But hey what do I know.

[ 05-29-2011, 06:00 PM: Message edited by: sixgoofykids ]

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You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'

---Eleanor Roosevelt

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sparkle7
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I guess I meant - I would contact this doctor * if I were you *... about studying Lyme further.

I don't live in CA, it's not really something that bothers me that this "one" doctor has a limited experience of Lyme. You know how many regular MDs know absolutely nothing about Lyme - even in highly endemic states...? Alot. Natrupathic & regular allopathic MDs.... People in the medical profession in general know nothing about Lyme.

In a perfect world - these people who we pay to treat us should be better informed in alot of areas. The truth is that they don't know everything.

This is why I love Lymenet.

PS - can you really ask someone not to post on a specific thread? I thought it was an open forum. I haven't read the threads where there may have been any contensciousness.

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momindeep
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My daughter utilizes integrative doctors and she has improved much. I think it is the best of both worlds.
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Abxnomore
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If one has a serious case of lyme and co's it's the only way to approach this illness and make progress.
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map1131
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Traditional and DC gets our crying pleading, ranting message! Help us!

Alternatives medicine and the powers that be in DC hear us pleading we don't need you messing up another part of our lives!!!!!!!

So DC needs our message on lyme disease, but only from Traditional standpoint?

You mean DC has a right to tell me that this herb, that supp, that accupunture, that chiro, that voodoo doctor is NOT legal?

I don't need DC and the idiots that manage our country in something they have no clue about.

They can't do anything right? Welfare? Medicare? Social Security? Public housing? Hurricanes? Foreign policy? Ridding the earth of one more evil monster?

Pam

[ 05-29-2011, 06:02 PM: Message edited by: sixgoofykids ]

--------------------
"Never, never, never, never, never give up" Winston Churchill

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sparkle7
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In thinking about this... I don't think it's a good idea to single out one doctor & criticize them publicly. If the doctor were anonymous - it may be better.

We post about doctors here via a first initial only because we don't want to add fuel to the fire of getting them blackballed or called on the carpet. I may not agree with many methods of LLMDs, as well as, Naturopathic or Allopathic doctors but I don't want them all to lose their ability to practice. Then we would become like Communist China during the Cultural Revolution.

I know I have had posts where I really lost my temper about some doctors but I was corrected. I think the website of this doctor should be removed from the thread. Moderators get really upset if people here criticize an LLMD - we should have the same respect of other types of doctors, too.

If people want to contact him - they could send a private PM to Tincup to get the doctor's info. The doctor in question has no idea that people are upset with him. He should be given the chance to learn or at least defend his position.

He's not the only doctor out there who doesn't understand about the seriousness of Lyme. Very few actually do. We are dealing with a very complicated illness.

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average joe
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Agreed Map, those idiots can't do anything right.
We certainly don't need them being yet more intrusive but that is precisely where it is heading.

I am going to go out on a limb here and state that americans in general are easily led astray. Reason being is we do not react sufficiently when we are told lies, half truths, or have our freedoms become ever more limited.

Each of us, when we see an injustice will get angry and think something needs to be done, yet very few will actually do anything. When those very few act, their numbers are typically small enough that their concerns can be brushed aside easily.

Most will say they're too busy. Reality, IMO, is that we don't want to deviate from what we are comfortable with. Being proactive takes a great deal of time and effort.

To be heard we all need to step up and persue these matters incessantly regardless of which type of healthcare you prefer. If not our choices will be gone and we will be left with whatever they feel like giving us. I would bet it won't be very much.

OK, OK, I'll get off my high horse now [bonk]

[ 05-29-2011, 06:06 PM: Message edited by: sixgoofykids ]

--------------------
If you play at the beach, expect to get some sand in your shorts [Smile]

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Robin123
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Hm - thx for bringing this to our attention. I happen to live but a few short miles from this doctor's office!

I think I'll study up on everything he's stating on his site, and then initiate some communication about more factual accuracy about Lyme, chronic fatigue and fibromyalgia.

I live in a city, and area, with several brilliant Lyme-treating doctors who do a mix of antibiotics and alternative care. We also are an area with probably hundreds of alternative care specialists.

I am not hearing that the solution to treating these conditions is an either-or one. People are getting better with both antibiotics and complementary care.

I know a Lyme patient who got better doing Chinese medicine and extensive PEMF treatments - ie, boosting their electro-magnetic energy such that their body had the energy needed to function better.

I don't fault this doctor's use of alternative care. What I DO care about is him making incorrect statements about the nature of and treatments for Lyme, chronic fatigue and fibromyalgia! Re chronic fatigue, it's still being researched and is probably too soon to make definitive statements about it.

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map1131
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Well, we most certainly need to start with those that have a degree on their wall. But they are being beat, ridiculed and in some cases even shut down for speaking and treating the truth.

They(LLMD) go before politicans and lawyers and judges and try to speak the truth, but we still have twittle dee and twittle dum giving a conflicting story to the powers that be.

Dee and Dum make our LLMDs look like abx rxing drug rings. We have to try to sneak around and only give out LLMD names if we think a poster seeking help is legit.

Anybody with half a brain (unlike dum) can figure out a good enough story for someone on here to give them a GOOD LLMD's name.

If I sound like I've had enough...it's because I have.

I'm ready to get involved politically or any other way I need to. I've got to come out of my world and fight this monster called lyme & co. For the first time I'm going to join a political movement and campaign soon for Nov elections and my beliefs.

I don't have a right to gripe unless I go out and make a difference in this world.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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dyna3495
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According to Jeff Foxworthy " You can't fix stupid"
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Robin123
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If you read his site, he's espousing IDSA/ALDF ideology all the way, and that is not the understanding that we here have regarding the medical truth of Lyme disease or fibromyalgia. Even understanding re chronic fatigue is in flux right now.

California allows people to practice various kinds of medicine. This doctor's right to practice is not in jeopardy in this state.

[ 05-31-2011, 05:05 AM: Message edited by: Robin123 ]

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onbam
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This is probably as accurate as what the average GP thinks about Lyme--not worth a thread, IMO. It's the people who are supposed to be "Lyme Experts" who are spouting untruths who are the real problem.

[ 05-29-2011, 01:24 AM: Message edited by: onbam ]

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randibear
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just remember our doc in denton, tx, who went out of practice because some husband got po'd at his wife's care or something. he claimed that this doc was selling stuff out of his office or something.

anyway he had an ax to grind and our beloved doc closed his practice after being reprimanded.

this was a huge huge blow to all the lyme patients in this three state area...cause most of them came from ok, tx, and la.

the actions of one person here caused untold hardship and suffering for hundreds of lyme patients and their families.

i actually cried when they told me he was closing his practice. i drove all the way up there and just sat and looked at his office because i couldn't believe it.

i hope that this husband got his pound of flesh and was satisfied....

there is always someone, and in this instance it happened to be a husband who i bet didn't believe in lyme and didn't want to pay the doctor bills, who is looking to hurt us.

if anyone knows differently, i sure would like to know. but please pm me privately.

just my two cents.

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sixgoofykids
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Please note, I have heavily edited this thread. With the holiday weekend I've been very busy and haven't had a chance to thoroughly read it (sorry OptiMisTick) much less edit it up until now. All of you know how long it takes to edit a post. Well, to edit a thread, I have to go in each and every post individually, so when there's an argument, it takes a substantial amount of time to do the editing. That's why most threads just get deleted or closed.

Posting links is allowed. If you're worried about doctors having websites, then tell the doctors. If they have a website, they have it for people to read, so there's no harm in providing a link to it. If it were harmful to the doctor for people to read it, it shouldn't be there in the first place.

In editing, all off topic comments were removed. Period. As I said, heavy editing. I like it no more than all of you.

Please stay on topic.

--------------------
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Tincup
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Goofy,

Your editing is VERY much appreciated! Thank you! And a bigger thanks for jumping in to work on a holiday weekend.

Now that the thread has settled down and our Memorial services are over for the day, hopefully I will get a chance to unwind, relax and respond to posters.

But NOT now, you BBQ eating, long weekend lovers, burn at the beach, fun in the sun party animals.

Not until NASCAR has rolled up the benches and put all the drivers to bed! It's 600 miles in North Carolina tonight!

Vrrrrrroooooooommmm......

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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stillwater.. You made me laugh at that one! Sounds like about 150 of my first 160 ducks!

[Big Grin]

Map, you are right. ONLY the quackers! HA!

````````````````````````````````````````
Hey Alana... you are right. I've not seen, nor heard of a moving rash in 90% of the people. What's that about?

There are some other doozies I'll post below. Really bad.

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Sparky said.. "I guess I meant - I would contact this doctor * if I were you *... about studying Lyme further."

Well, since you don't want to do it, I'm glad to have Robin3535482 offer.

Please keep in mind... no matter how hard I try, I can't do it all. So feel free to jump in anytime and do your best to try to make things better for all of us, when ever you can.

And one of the reasons I post the good stuff and the bad here when I have time is to hopefully spark interest in others to do some advocacy work.

The main reason to share though is to educate.

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momindeep, I am with you on that. No one approach has ever been shown to work for everyone. Nice to know your daughter is being helped using a combo of approaches too!

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ABX no mo... I should have read down and used your post for my response above. 100% right you are!

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Sparky again.... I am not slamming a LLMD or any other doctor "type". I am exposing someone who claims to be able to diagnose and treat **any** disease or injury using modalities that have never been proven to cure Lyme nor deemed appropriate to treat it.

Notice no antibiotics are mentioned in his approach to Lyme (a bacterial infection) and he doesn't believe there is such a thing as chronic Lyme. That has duck written all over it.

And I am sharing info on someone who also provides the public a really bad description of Lyme, which is at best totally misleading and at worst, dangerous.

We do that all the time here. I'd do it by PM, but I don't PM. That guy is actually doing himself a disfavor by posting that information publicly.

I am simply one of the messengers.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Average Joe, you are anything but! [Big Grin]

You said.. "Each of us, when we see an injustice will get angry and think something needs to be done, yet very few will actually do anything."

BINGO! That is one reason why I am trying to point things out as I have time, so hopefully someone will get angry enough to do something to help us in this plight!

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Robin35645... GOOD FOR YOU! Glad you will try to educate this fellow. Thanks!

Glad too we have someone willing to do what it takes and we were able to find someone close to him to make him a "goal".

Very pleased to see you, once again, reach out and touch someone.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Map said.. "I'm ready to get involved politically or any other way I need to."

Great day in the morning! What a wonderful thing to do! Nice to see you were able to get something positive out of this post. The world will be a better place for your efforts.

Hot diggity dawgs!!! Love it!

``````````````````````````````````````````

Hey dyna! I got laughing when I saw your response. Those guys are so funny! Whenever they have a TV program with the four of them doing their comedy I try to see it. Even if I've seen it before, it still makes me laugh.

Here is Ron White, just for you!

http://www.youtube.com/watch?v=0gxKStPXyn8

```````````````````````````````````````````
onbam. I agree. This guy isn't worth a thread. BUT, because of it we have found more folks willing to speak out and help in our plight. So maybe not all wasted?

``````````````````````````````````````````
Randibear, yes that was heart-breaking. It really hit me hard too! I've been to many of the hearings for a number of LLMD's across the county and the system of injustice and corruption makes me sick.

We've also lost a few docs around here because of IDiots. The sad part is them being crushed after all they tried to do, and then the hundreds of patients left without help.

This guy though isn't in danger because of this post. He has his own info out there for the world to see. And by no means is he Lyme-literate.

`````````````````````````````````````````

Indom Spirit... Never could spell that word! HA!

Thanks for the kind words. Much appreciated. And yes on your comment...

"The person on the website is putting out bad information, it doesnt matter their credentials or letters following their name."

EXACTLY! I don't care if they sit by the river at night just to boil eggs, or go to the Inaugural Ball as an invited guest wearing nothing but their birthday suit.

Bad info is bad info. Glad you saw that and commented!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Here are more quotes from the website shared above for those who don't want to read the whole page.

Duck stuff, or a blessing and help for Lyme patients?

You decide.

BTW- Could someone tell him it is called & spelled, LYME disease, not LYME'S?

[Big Grin]

"Many patients are convinced that they have Chronic Lyme's Disease, or various other infectious or metabolic disorders, without sufficient evidence to support the diagnosis."

[The quote below is not even true.]

"The lack of sound scientific study of these various chronic fatique syndromes has prompted patient advocates to initiate legislative action on the subject of Lyme's disease that now has created government guidelines advocating the use of extended antibiotic therapy that is not supported by various Lyme's disease organizations, or by top university researchers."

"... that prolonged antibiotic therapy, or even the long course of initial antibiotic therapy, in Lyme's disease, could be the cause, or a cause, of many chronic fatique syndromes with inexplicable musculoskeletal pain and neurocognitive dysfunction."

"Experts around the world, studying the rising incidence of Lyme Disease, have found that in almost all cases of definitively diagnosed Lyme Disease with symptoms, that **a single short course of antibiotics effectively cured the infection, with only about 5% requiring a second course.**"

"... Chronic Lyme's Disease should be replaced with the term Post-Lyme Disease Syndrome to indicate that the chronic fatique syndrome following an episode of Lyme's disease not be attributed to a current infectious state."

"... the chronic fatique syndrome frequently called **Chronic Lyme's Disease was not a syndrome of prolonged infection with spirochetes**, but rather a syndrome of complex neuroendocrine immune dysfunction that should be called post-Lyme Disease Syndrome to guide a more appropriate treatment protocol."

"A 2010 statement by the American Lyme Disease Foundation suggests that the use of a prolonged antibiotic regimen to treat so-called Chronic Lyme Disease is not based on scientific evidence and has been shown to be harmful and without benefit."

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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AlanaSuzanne
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TC you go girl! Continue doing what you do.

In the meantime if/when I hear anything else about a moving rash in 90% of people I'll let you know.

--------------------
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'

---Eleanor Roosevelt

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Abxnomore
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LOL! The American Lyme Disease Association.....the front for misinformation, Alan Steere and his cronies and the IDSA!

This guy's site is dangerous. He doesn't have a clue as to what he is talking about regarding Lyme, no clue at all. No medical person should be spreading misinformation about any illness and if one is going to treat an illness they should at least understand it!

He could qualify for a piece on Quack Watch!

We should all contact him and educate him and ask him not to post misinformation and patently false information about Lyme Disease. I don't see an email even listed on his site, unless I missed it. That would be the easiest way to send him tons of information.

How many suffering patients has he lead astray?

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map1131
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Well if this duck is getting his info from the biggest duck in the world???????????

Why oh why couldn't you TC go out on a limb, after all you are such a big doer for our cause. and give this doc a real education about lyme from one of docs that know it, LIKE DR K?

Seems to me an illerate acupuncturist, chiro, voodoo doc would do no harm to a patient that has over all body pain, neck pain, parasites, etc etc etc etc.

Who cares if this guy is treating the sx of these patients. He's just like the other 80% MD, ND, DDS, NP, around this nation that don't have a clue why these patients are so sick.

At least he's being helpful. I would bet he is giving more results than any Traditional doc these patients have seen. By Traditional of course I mean the quackers.

It doesn't matter how many patients he's lead astray. He has been lead astray. Why does this specific dic being ridiculed on this site????

There is a hidden agenda here and only one of you and some followers are aware of the personal agenda.

I've gone to quackers before and used them for their tx. I'm not there long, but I can use tx that are really outside the box today.

If you thought you could attack DR K and his comments on drinking urine, you'd jump all over it.

But you know that could be death to your cause.

Pam

PS: Don't bother reporting this post. I've already reported me to the moderators. Thank you.

--------------------
"Never, never, never, never, never give up" Winston Churchill

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sparkle7
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I don't know but this whole thing seems a bit like a tempest in a tea cup...

People who have been touched by this illness may be oversensitized to the horror of Lyme. I can agree with that. There is no one "right" way to cure Lyme or whatever the illness(es) may be that is/are causing people to be ill. I'm not so sure long term heavy abx are the answer but I don't think they should be banned to everyone, either.

I'm just not sure how this fixation with this one particular doctor happened. Why has he been singled out as "the enemy"? I'm not trying to be disrespectful to anyone - I'm just wondering how you found out about this particular doctor, Tinny?

It seems a bit odd... I mean, how many other health professionals out there know next to nothing about the issue of Lyme Disease & treatmet options?

I know I've seen quite a few in the 16 years I've been ill. If I were going to write letters - it would be to them, not to some doctor in CA that I don't even know.

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Abxnomore
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If this guy is going to have a website and basically be spouting the IDSA misinformation under the guise of alternative/integrative care, then he deserves to be singled out along with anyone else that does. It really brings up the point just what kind of integrative practitioner is he? Most that I know don't spout the IDSA position hook line and sinker even if they are not experts in treating Lyme and co's.

This is not about alternative vs. mainstream care but about printing information on a public website aimed toward helping people and he is basically saying that chronic lyme does not exist. How will he help them if he does not believe in the illness?

This should be making every one angry and he should be notified that he is incorrect with the appropriate data. I can't find an email on his site and I'm more than sure his office is closed today.

Have you read this? It's right out of Alan Steere's playbook:

quote:
"Many patients are convinced that they have Chronic Lyme's Disease, or various other infectious or metabolic disorders, without sufficient evidence to support the diagnosis."

[The quote below is not even true.]

"The lack of sound scientific study of these various chronic fatique syndromes has prompted patient advocates to initiate legislative action on the subject of Lyme's disease that now has created government guidelines advocating the use of extended antibiotic therapy that is not supported by various Lyme's disease organizations, or by top university researchers."

"... that prolonged antibiotic therapy, or even the long course of initial antibiotic therapy, in Lyme's disease, could be the cause, or a cause, of many chronic fatique syndromes with inexplicable musculoskeletal pain and neurocognitive dysfunction."

"Experts around the world, studying the rising incidence of Lyme Disease, have found that in almost all cases of definitively diagnosed Lyme Disease with symptoms, that **a single short course of antibiotics effectively cured the infection, with only about 5% requiring a second course.**"

"... Chronic Lyme's Disease should be replaced with the term Post-Lyme Disease Syndrome to indicate that the chronic fatique syndrome following an episode of Lyme's disease not be attributed to a current infectious state."

"... the chronic fatique syndrome frequently called **Chronic Lyme's Disease was not a syndrome of prolonged infection with spirochetes**, but rather a syndrome of complex neuroendocrine immune dysfunction that should be called post-Lyme Disease Syndrome to guide a more appropriate treatment protocol."

"A 2010 statement by the American Lyme Disease Foundation suggests that the use of a prolonged antibiotic regimen to treat so-called Chronic Lyme Disease is not based on scientific evidence and has been shown to be harmful and without benefit."


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Catgirl
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The majority of doctors I've met in my lifetime have been a bunch of know it alls with terrible listening skills and giant egos. I have to wonder why this doctor was on lymenet to begin with.

If anyone here really wants to help us lymers, write to your governor, attorney general, congressperson, senator and our president.

The pen is how you change things. The more ink, the sooner change will come.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Abxnomore
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I have been part of the lyme community for over 13 years. I can tell you that much ink has been used, much political action has been done, many protests at government offices have been organized, letter writing campaigns to support bills in the legislature have been carried out and even an investigation of the IDSA by then Attorney General Blumenthal of Connecticut including hearings that were shown live on the Internet.

We have made progress but we have a long way to go. And I can tell you that without a doubt TinCup has used a huge amount of ink during the many, many years she has been part of this community and still does.

Yes, I agree that the power of the pen is an important tool for this community and has been used judiciously and abundantly for many years now. That is how the many, many changes that have been affected have taken place in the Lyme community. By the power of the pen and community involvement and activism many of whom are still with us all these years later fighting the good cause and to one day put a stop to the kind of language that was referred above, which is patently false and is promulgated to push the agenda of the IDSA and the American Lyme Disease Association.

It must be called out and stopped where ever and when ever we see it. We have worked too hard and suffered too much to ignore such blatant stupidity.

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Abxnomore
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quote:
The pen is how you change things. The more ink, the sooner change will come.
Don't expect too much change too soon when the very organization that is supposed to aid us have a vested interest in not doing so. This has been a very long battle and yes the power of the pen must be used but the word "Soon"er is far off in the distance when all these many years later our illness is still a throw away illness and not acknowledged by the very organization that should be setting the guidelines and doing the research to help us.

They have the political and scientific clout to have things their way and have had it though the tide is very slowly turning. After the IDSA was brought up on charges of conflict of interest and after an entire hearing their patently false guidelines were rubber stamped with not one change, the word "Soon"er really does not hold too much water.

This is a very old battle and the powers that be will continue to do their best to keep the status quo while the truth is denied and patients are denied care and struggle and suffer.

I wish I could agree but there is no "soon" in the world of Lyme. It's all about politics and maintaining the status quo. It's a very slow process but we will never give up.

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map1131
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A pen doesn't do crap. Get real. It takes a voice.

Not some person with paper and pen ranting and raving about ticks and lyme disease.

Use your ink and paper! I can do more than that.

I'll even quote Hilliary "It takes a village" not of children but adults who have the same agenda.

Don't see that happening anytime soon.

Pam

I'm done with this topic. I'm so over it, it's not even funny.
In fact I need to see if I can delete from my site. I'm moving on to helping people find a way to feel better.

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Tincup
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Woah,

What's up Map? I was just researching to reply to your earlier post to share the following information so perhaps you might understand. Not sure I understood your earlier post, but I was trying.

You said.. "Why oh why couldn't you TC go out on a limb, after all you are such a big doer for our cause. and give this doc a real education about lyme from one of docs that know it, LIKE DR K?"

Assuming this isn't a slur or a terribly nasty remark, as it sort of sounds... I'll try to answer.

I'm sorry to say I am not able to do it all. I'm stretched so thin now with Lyme work that I can see through myself.

I've got over 10 websites full of information for patients, doctors and the public. I write numerous documents, drafts and letters each week. I read and research till I fall asleep in this chair trying to keep up. I can't humanly do more than I am doing now to try to help folks. It is not possible.

We need more people working, researching, writing, meeting, etc to make our voices heard. Often I come here and ask for help (especially when on a deadline and other activists are sick or not available, or post something that is good to inform folks or get them involved.

That's just what I do. And generally there is someone, or several people who can jump in and give a hand.

Bless them all.

I'd already done several responses to several bad items found in the past two days when I wrote that post, and this was the last article I ran across while researching that night (see the time this was posted- after 2 AM. I was worn down and tired by then with no more to give).

So, I tossed it out here like I've done many times before and luckily we learned that a well-respected LymeNet member/activist happened to live near this person and has, BECAUSE SHE SAW THIS POST, volunteered to help educate him.

Problem solved.

You said.. "There is a hidden agenda here and only one of you and some followers are aware of the personal agenda."

Sorry Map. If there is a personal agenda that someone has I don't know anything about it. I am a straight shooter and if I had an agenda other than what I posted I would tell you. I can't even think what kind of hidden agenda I could have or why?

There is no hidden agenda, period.

You said... "At least he's being helpful."

If you can say that after reading what he wrote about Lyme, then we will just have to agree to disagree. (Last you mentioned you hadn't read the web page I posted.)

I believe he is not only NOT being helpful, he is dangerous when he posts bad and inaccurate information.

Please do read it all and then tell me again you think he is being helpful to our Lyme patients (keeping in mind he doesn't believe in chronic Lyme).

If you can read it and in all good of your heart say that he is being helpful to us, then we will just have to agree to disagree.

You said.. "If you thought you could attack DR K and his comments on drinking urine, you'd jump all over it."

Actually I missed those comments, but you bring up a good point.

I don't even pretend to know what he knows. What I do know is that he IS Lyme literate and is dedicated to helping our patients. How he does it is each patients individual choice to pursue.

Drinking urine doesn't sound real appetizing to me and may not fit my needs, but I have absolutely NO clue if it would help anyone else or not.

In fact, I've only ever heard of doing that once before and that was in a movie with Bett Middler and Danny Divito (comedy) called "Ruthless People".

My post was not done to single out all blue-eyed doctors or to point out who was too fat. My post was only intended to show bad and potentially dangerous INFORMATION being shared on a website of some unknown person.

I hope that better explains it for you.I will add some things I was looking up below on the next post.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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This is an example of what I do.

Please take a minute to read it and try to figure out the amount and depth of research involved. While researching I run across good info and bad.

When I do and it is real good, I often post it here for all to read and more often than not have sent a note to the author thanking them.

When it is bad, I often get to work to do something to make it better for all of us.

Just one example...


Press Release- Take a Tick to Lunch, Literally...

January 5, 2011. Researchers at Bethesdas National Institute of Allergy and Infectious Diseases (NIAID), Yale and Tufts are searching for Lyme patients willing to provide meals, lodging and perhaps even some light entertainment for a couple dozen ticks that would stay with them, actually on them, for up to a week.

The study, unofficially dubbed the take a tick to lunch program, isnt making many points with anyone.

To play host to a clique of ticks, applicants are required to undergo a physical examination and provide blood and skin samples prior to having 20-30 ticks placed on their body, preferably at the site of a Lyme rash.

If no rash is present, the tiny guests will be placed on the non-dominant forearm and be sent home with participants. Follow-up skin and blood samples will be collected for study.

Volunteers will be required to keep track of symptoms or problems that may arise while the ticks are leisurely feeding on them to help researchers address the second outcome measure of the study- assessing the safety of this procedure in humans.

Once the ticks have thoroughly enjoyed the hospitality of their human donor, they (the ticks) will be allowed to progress to the next stage of life (nymphs) prior to being placed on a few immunodeficiency mice.

The primary outcome of this experiment is to determine whether this method (xenodiagnosis) can detect the continued presence of B. burgdorferi in patients with Lyme disease after antibiotic therapy.

Simply put, the grantees want to know if humans who have been treated for Lyme disease can still infect a tick, and the tick then pass the Lyme disease to a mouse- a sort of spin on the normal transmission method, and an unusual technique that begs the question, why?

Persisting Lyme symptoms after treatment are well-documented and evidence of spirochetes have been detected in animals and humans after they were treated, yet Program Director Linden Hu, of Tufts University School of Medicine, recently received a federal grant for almost of a million dollars to conduct this latest effort, Searching for Persistence of Infection in Lyme Disease.

In the past six years Hu has been awarded over $3.5 million dollars by the NIAID/NIH.

Critics of the study are concerned Hus and his colleagues will utilize the findings as a basis for solidifying recommendations against treating sick patients with additional antibiotics if humans fail to infect the ticks or the ticks fail to infect the mice.

Hu and his colleagues fell short of enlisting patients (-153) in a previous Lyme related study, yet conclusions were published and a decade later the results are still used as one of the main reasons for recommending against treatment for patients, which in turn supports the denial of reimbursement by insurers.

Hus conclusions, like those in other studies he has been involved in, will be based on results of Lyme tests that Johns Hopkins, CDC and others have referred to as unreliable.

Patients question the relevance of the study and how it fits in the larger scheme of things, like finding an accurate test or cure for Lyme disease.

Many feel its only use will be to add more fluff and loftiness to the mounting stack of highly questionable science published in the last few decades.

`````````````````````````````````````````

I chose to do this because it needed to be brought out how tax-payer dollars are being squandered by the IDiots.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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You will see that I often post information on sites, people, things that give out bad information to the public.

As I'd mentioned before, I am an equal opportunity basher. Bad information is bad information. A duck is a duck.

Here are a couple of recent bad articles that needed addressing, for example. I don't know how many people took the time to research the facts and respond, but I did.

http://www.chicagotribune.com/health/ct-met-chronic-lyme-disease-20101207,0,5671843.story

http://www.cbsnews.com/2300-204_162-10007902.html?tag=page

A few previous posts of mine here (or ones I've replied to) about bad Lyme info being out there.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/90028?

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/98982?

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/92679?

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/89706?

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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And I am not the only one who exposes the bad stuff out there.

There are some wonderful blogs that provide accurate and up-to-date information. Both of the examples below are done by very dedicated Lyme activists that I deal with on a regular basis.

http://www.lymedisease.org/news/lymepolicywonk/index.1.html

http://www.lymedisease.org/news/touchedbylyme/index.1.html

So are we "cool"? There is no agenda. It is not medical vs. alternative.

It is what I do.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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AbxNoMo said.. "This guy's site is dangerous. He doesn't have a clue as to what he is talking about regarding Lyme, no clue at all."

THANK YOU! You got it!

And thank you for replying in such good detail to the questions posed while I wasn't online. Very nice! And much better than I could have done!

`````````````````````````````````````````

Alana said... "In the meantime if/when I hear anything else about a moving rash in 90% of people I'll let you know."

[lol]

You sure better. I'd hate to miss that one! Get pictures if you can. No, better yet, make it a video if you want to capture the "moving" rash.

HA!

`````````````````````````````````````````````
Sparky said... "I'm not trying to be disrespectful to anyone - I'm just wondering how you found out about this particular doctor, Tinny?"

It's called work. HA! Researching one topic pulls up many sites and this was just one of many I read that night. It happened to be a bad one in need of attention.

`````````````````````````````````````````````
Abx No Mo said... "This is not about alternative vs. mainstream care but about printing information on a public website aimed toward helping people and he is basically saying that chronic lyme does not exist. How will he help them if he does not believe in the illness?"

B-I-N-G-O! Exactly! You got it!

`````````````````````````````````````````````
Mindy said.. "If anyone here really wants to help us lymers, write to your governor, attorney general, congressperson, senator and our president."

YES! Educate, educate, educate. And don't forget your local papers. You can reach thousands of people from the comfort of your own home by writing a Letter to the Editor, sharing your story, etc. Thanks for pointing that out Mindy!

````````````````````````````````````````````
Abx No Mo said... "It must be called out and stopped where ever and when ever we see it. We have worked too hard and suffered too much to ignore such blatant stupidity."

Again, you are right on target. You hit the bull's eye. (Pardon the pun!)

`````````````````````````````````````````````
Map said... "A pen doesn't do crap. Get real."

Ouch! It sounds as if you have your knickers in an uproar Map. Not like you. That is like ME, but not like you.

Hopefully, you will feel better later. I do hope so.

`````````````````````````````````````````````
My bet is this post has run its course. If the moderators would like to lock it up and send it down the line, please do.

I have to get back to some other stuff tomorrow and I think we've all had a chance to say our peace.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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AlanaSuzanne
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You betcha.

I'm on high alert for that moving skin rash. That includes pix and videos. I'm on it like white on rice.

Gonna be a loooong summer waiting to see that.

--------------------
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'

---Eleanor Roosevelt

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sparkle7
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Fair enough... I really didn't know you were doing all of this work, Tinny. I see your posts from time to time but I didn't know this was an advocation.

I guess your use of language was a bit inflammatory given that it's not unusual for doctors not to know alot about Lyme in general. I thought you singled this one out for some reason & it seemed a bit excessive.

I can see why you might be upset but as they say - "you might be able to get more flies with honey than with vinegar"...

I'm no great writer by any means. Some people here are quite good at it. I studied visual art... I wish I could write as good as some people here do. It's not my forte', though. As far as typing goes, forget it... Hunt & peck.

Posts: 7772 | From Northeast, again... | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Robin123
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Thanks, TC - I will attempt to communicate with him when I'm ready -

Anyone can send a letter to either of the addresses listed at the site - I think the more people he hears from, the better.

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onbam
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Good article on that insane tick study, TC! What an insane, insane use of our tax dollars...
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Tincup
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Alana... Don't hold your breath waiting for it to happen! HA!

Yes, Sparky, more flies with honey, I know. I tried that for 15 years, as have others. It didn't work. People are still suffering and dying.

Ever watch the movie Billy Jack? Sometimes you just have to get out there and kick big time butt to get something done.

I also think the honey approach is best used, in my opinion, on reasonable people. NOTHING about the IDSA is reasonable, nor has it ever been.

Robin636537496048364860426295057.. Thank you!!!! Your activist efforts are always appreciated!

Onbam- Thank you too, for the kind words. I don't know about you, but I sure don't want to have ticks feeding on me for a week, especially on purpose!

And what the hay? What will that waste of money research prove anyhow? Let's get with the 21st century and move forward I say!

To note- that dude was part of the Kempler study I believe. Go figure! UGGGGG!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Robin123
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Thx, TC - I believe that's the longest string of numbers you've ever bestowed on me - nice show of appreciation!

Yeah, I'll handle it - I used to see someone else in the office, so that may give me an in.

If anyone else wants to write, the address is listed on the site.

Just spoke with another doctor yesterday and it went pretty well - we both learned stuff - it can be worthwhile reaching out to medical folks -

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ping
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So typical...LOL! I have to laugh, Cup, else I'd be crying all the time.

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ping
"We are more than containers for Lyme"

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Tincup
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[lol] Ping!

I know what you mean! But, as a counter, here is a better article that Philly just posted here in Medical.

So, there is good and bad out there.

http://www.prohealth.com/library/showArticle.cfm?libid=16301&B1=EG060111

Robin 78486940576748940685749405... Like those numbers, eh? HA!

Good job! Thanks for that. Now don't get discouraged if they don't accept it all. As I like to say....

You can lead a horse to water, but you can't hold its head underneath it till he listens.

[lol]

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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randibear
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i just wish i had the intelligence anymore to understand all of this. i have lost so much of my cognitive abilities it's not funny.

you read so much and you really don't know what's right and what's not.

i'll rely on individuals on this board to help me. my duck doctors, now i'm talking about MY doctors, are clueless when it comes to lyme. they won't even listen and don't want to.

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do not look back when the only course is forward

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Robin123
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Have to get my verbs fired up for educating this acupuncturist...

Gonna poke him with the truth, gonna needle him a bit about the topic, gonna stick him with the best brochures. Anyone want to give this a twirl?

Randibear - too bad you don't have a good Lyme doc - it would help -

[ 06-02-2011, 02:54 PM: Message edited by: Robin123 ]

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