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» LymeNet Flash » Questions and Discussion » General Support » Sick clinical trial

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Author Topic: Sick clinical trial
lax mom
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http://clinicaltrials.gov/ct2/show/NCT01143558?term=lyme&rank=4

They will place 30-40 "disease free" ticks on the participants' skin and remove them 4-6 days later.

This is disgusting! How do they know the ticks don't have other diseases????

Who would volunteer for this?????

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Lymetoo
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OMG!! That is horrible!

Just think how many will get babesia, bartonella, RMSF, ehrlichia, etc.

I hope they tested the ticks for all of the above and more... but you know they DIDN'T!!!

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--Lymetutu--
Opinions, not medical advice!

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Keebler
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This needs to be stopped before they gather even one participant.

So many things very wrong about this, so many. There is no way to find with certainty, or assure that any particular tick is disease free. No way.

Not only will this endager the participants, the research methods here are just so invalid. They will not find anything.

And people will suffer but it will be after the follow-up period so will be discounted.

Please help to stop this study.

I don't have the energy to do so but, for anyone who might, wonder if the groups below might be allerted so they might come together and act against this?

All I can do is suggest a place to begin is getting all these groups together in one voice against this. Hope someone has energy to propel this.


Lyme Disease Association - http://www.lymediseaseassociation.org

Lyme Disease.org - http://www.lymedisease.org

ILADS - http://www.ILADS.org

Tick-Borne Disease Alliance - http://tbdalliance.org

Time for Lyme - http://timeforlyme.org


[ All are ILADS "minded" - they just each have a different focus in their mission.]


LOCAL, concentrated communication efforts in the city / state where the study is to be done.

The state and local lyme support groups in the state where this is to be conducted - and any nearby border states, too?

In addition to "regular" channels, channels for those who don't tune in the "regular" channels.
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[ 07-27-2013, 03:12 PM: Message edited by: Keebler ]

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GretaM
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Researchers at the university of Alberta (doctors names removed to protect them), are doing genome testing on ticks.

One tick, from Northern Italy, had 258 different bacteria genomes in it's gut...different continent, but shouldn't matter...ticks are filthy regardless of latitude and longitude!

I highly doubt that the "disease-free" ticks for this study have been tested for 258 different strains of bacteria... Probably only tested for BB... And we know how "effective" that testing is...

This is terrible!
This brings to mind the same "scientific" malarky that began the Tuskagee Experiment.
This needs to be stopped.

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GretaM
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THIS is where the funding for lyme disease reasearch is going?!? There are so many holes in this study it can be called Swiss cheese!

Who in their right mind, who has had or currently had lyme disease would vollunteer?

I was derailed by 2 ticks... Imagine the damage done by 30-40! These people will die! And because the study ends 2 months afterward, their deaths will be attributed to other causes, or cause unknown!

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poppy
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There was already an objection from lyme activists about this trial, which was ignored. Insane.
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Keebler
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Greta's point about: who's paying for this? really hits home, too. And not just who's paying for this, who is planning on profitting form this? They are already on the payroll at this point.
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Lymetoo
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It's paid for by the NIH, right? The TAXPAYERS?

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lax mom
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Yep, it's the NIH. It's disgusting.

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MannaMe
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Do you get PAID to be in this study?

Why would anyone let a tick bite them??

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lax mom
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I don't know MannaMe. I wouldn't let 1 tick bite me, let alone 30-40 ticks "feed" on me for 6 days.

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Sammi
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Holy Cow! I do not think there is any way "disease free" can be guaranteed! Even the best Lyme doctors think ticks likely transmit infections we don't even know about. They cannot test for those!

This is unethical. I hope no one volunteers for this.

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Lymetoo
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I would imagine they get paid.... probably a big sum. Most would refuse the study just based on the ICK factor, if nothing else!

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--Lymetutu--
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Sammi
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I hope everyone refuses! No amount of money is worth the risk, right?
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lax mom
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Sadly, I bet they get volunteers who are desperate for money (ex. drug addicts) and don't care about the risks.

I hope none of you guys in CT have that Dr as your PCP.

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Lymetoo
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Imagine this:

You have 30-40 ticks on you (for 4-6 days??) .. they drop off as they become engorged. They are now in your house!

Can you imagine leaving them on you for days on end!?? All in one area, like on your arm??

[Eek!] [Eek!] [loco] [shake]

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or does it say they are under a sticky tape? ???

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Sammi
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OMG that is a nightmare!!!!!!!!!!!
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healthywealthywise
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I guess it's totally evil and mean-spirited of me to sign up all of the ducks that denied I had lyme & Co for 14 years.....one going so far as to scream at me "YOU DON'T HAVE LYME DISEASE" [Mad] on the phone when I called to say I was finally correctly diagnosed and they were WRONG?

That would give them about 12 participants who can now prove to me that I was wrong to doubt them all along?

Yes, that would be evil of me. But where else can Karma be proven to exist for those perpetrators of my life's downfall? [shake]

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Dekrator48
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One would think that IDSA Dr's would have no trouble participating in this study since they claim tick-borne diseases are rare, hard to get, and easy to treat.

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The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Rivendell
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Dekrator48, that is always my thought about those who recommend just 10 days of antibiotics, or even just "one" doxycycline capsule.

I always think, "since you think Lyme is so easily cured, why don't you go sit in a marshy area for the afternoon, after all if you get infected, all you need is "one" Doxy capsule immediately to protect you. Or ten days worth at the most. It is so easy. And this disease will only give you sore knees. Nothing to be concerned about. Go ahead and sit down with the ticks. Nothing to be afraid of."

Do you think they would do it?

Chicken ****s!!!

OOPS!

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Keebler
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In addition to other issues (other infections not addressed with abx, etc.) with those doctors who think one abx - or a short course of a abx will do,

With even the very first pill in a very short time, how just doxycycline (or other antibiotic, alone) can cause chronic lyme:


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Topic: replication within cystic forms of lyme
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Rivendell
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Thnaks Keebler.

The powers that be don't want to accept the cyst form.

Why Lyme is just a friendly little critter in their eyes.

Do they have eyes?

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Rivendell
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This "may" be the study to prove/disprove Chronic Lyme.

The volunteers would need to be treated "properly" for Lyme.

If the "disease-free" ticks can get lyme from these volunteers (the scientists being able to culture the lyme from the ticks that were on the volunteers), then there is proof that lyme can still be in your body after "proper" treatment.

So if this study is to prove/disprove chronic lyme, I wonder how "honest" their results will be?

Not sure this is "that" study, but heard the "scientists" might do a study like that.

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Lymetoo
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You guys are funny! [lol] ..

Rivendell.. You are probably right about the study. I was trying to figure out where they were going with that. It is a very convoluted study.

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lpkayak
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Hmmmm. Wonder how immu e. Systems of homeless drug addicts compare to the rest of us

The whole thing is weird. Too many uncontrolled variables. They can't be that stupid they must be doing iit on purpose

They will decide something like long term abx don't work and define long term as a few wks or months

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Lyme? Its complicated. Educate yourself.

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katiebobatie
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Wow, this is INSANE!!!

it sounds to me that by claiming the ticks are disease free, when they test the patient s and get positive results they are going to say it proves that lyme tests are mainly false positives.

I hope I'm not understanding this correctly, but that's what comes to mind for me...

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hiker53
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I sent them an e-mail to ask how they can be sure the ticks are disease free. Be interesting to see if they respond.

You'd have to be "cuckoo" to be in that study.

Hiker53

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Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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Lymetoo
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Good one, hiker! I hope they reply. I guess they'll just say that they tested them. hahahaha

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lax mom
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Yeah, they gave them an Elisa and they passed with flying colors!

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