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This is what we are up against - CDC's newest warning

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Posted 6/19/2017 1:44 AM (GMT 0)
Wow. I had no clue we were up against anything, but I'm quickly realizing the opposite. Scary!
Posted 6/19/2017 7:02 PM (GMT 0)

Aliya said...
Don't worry Aylett I was just joking smile, they are not worth my energy tongue

All right! Glad to hear it! Keep feeling better!
Posted 6/19/2017 7:16 PM (GMT 0)

julymorning said...

TxBart said...
I'm just curious, does anyone know what the CDC equivalents in other countries are saying about chronic Lyme?

The NHS in the UK follow whatever the CDC spews out. Unfortunately.

Extremely sorry to hear that, I thought the Brits were smarter than us.

And the Canadians too. Talk about the blind leading the blind.

Post Edited (Aylett) : 6/19/2017 1:19:17 PM (GMT-6)

Posted 6/20/2017 2:47 PM (GMT 0)

lpaiges23 said...
Wow. I had no clue we were up against anything, but I'm quickly realizing the opposite. Scary!

Lyme disease, particularly chronic Lyme, is in the midst of a massive political battle - and we are caught in the middle.

Here are the two sides:
ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

archinte.jamanetwork.com/article.aspx?articleid=226373

www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/​
Posted 6/20/2017 5:54 PM (GMT 0)
We (Canadians) - are trying to make changes...a couple of lyme advocates went to the House of Commons with 2,000 letters from Lyme patients...and the Health Minister refused to meet with them.

Now, they are involved in trying to rework the 'framework' for testing, diagnosis and treatment of LD. The framework came out of the Bill pushed through by Green Party Leader, Elizabeth May (2014)
The framework - is a pile of crap.
So much focus on surveillance. (where the ticks are...and how many) - bull-sh** stuff.

Hoping something comes of it.

At least my own Dr. has changed her practice. Anyone coming in to her office that has a strange bite...and if they even think it's from a tick, but don't know for sure...she gives them a few weeks of antibiotics.
Progress!!!
Posted 6/20/2017 9:51 PM (GMT 0)
Hi Girlie,
Wish more docs were like yours.
In Virginia, at our nurse practitioner office, tick bite is 3-5 days doxycycline. Tick bite with raised bump at site of bite is 14 days doxy. I believe full scale target rash or Lyme symptoms is still Doxy for 30 days.
NP reports heavy influx of tick bite sufferers because of warm winter.
Aylett
Posted 7/16/2017 12:19 AM (GMT 0)
It seems like this is a huge problem everywhere.
Posted 7/16/2017 12:45 AM (GMT 0)

Traveler said...
Hi Sheilazae,
Welcome to our community! I'm so glad you found us.

We have a no advocacy rule here, but if you would like to email me, I do know ways to get involved.

Hi, would posting the ways to get involved be considered advocacy?
Posted 7/16/2017 12:49 AM (GMT 0)

TxBart said...
At least Canada has left the door open a crack. I ran into a CDC puppet this week when I went to a neurologist who treats three lyme patients for Bell's palsy. He discounted my DNA Connexions test results because they weren't Western blot and because a naturopath had ordered the test. He also doubted my diagnosis because I don't have Bell's palsy. He proceeded to print out 25 pages of CDC guidelines for me to read. I told him eighteen licensed medical doctors failed to even suggest my problem could be bacterial so he could take his CDC and fancy license and shove it.

Hi, what is your DNA Connexions test? Is that the name of an actual test?
Posted 7/16/2017 1:21 AM (GMT 0)

Shellazae said...

TxBart said...
At least Canada has left the door open a crack. I ran into a CDC puppet this week when I went to a neurologist who treats three lyme patients for Bell's palsy. He discounted my DNA Connexions test results because they weren't Western blot and because a naturopath had ordered the test. He also doubted my diagnosis because I don't have Bell's palsy. He proceeded to print out 25 pages of CDC guidelines for me to read. I told him eighteen licensed medical doctors failed to even suggest my problem could be bacterial so he could take his CDC and fancy license and shove it.

Hi, what is your DNA Connexions test? Is that the name of an actual test?

dnaconnexions.com
Posted 8/3/2017 1:57 PM (GMT 0)
Just in:

Studies that Report Unexpected Positive Blood Cultures for Lyme Borrelia-- Are They Valid?
www.dmidjournal.com/article/S0732-8893(17)30237-7/fulltext

Mr. Wormser strikes back....
Posted 8/4/2017 2:18 AM (GMT 0)
Hi! I just joined this forum and this is my first post. I've been reading on here for quite some time and finally joined.

I was disturbed by something I read in TxBart's post above stating his DNA Connexions test was discounted. I had numerous tests done and my DNA Connexions test was the only positive one. I had some kind of test done in 2012 after I started having bone pain. I was tested then for Lyme, Rocky Mt Spotted fever and one or two other things. Those all came back negative and that's all it said - no bands identified. Last Sep, I had 2 positive bands on the Labcorp Western blot that was interpreted as negative and several positive bands and one indeterminate band on the Igenex, which was also interpreted by Igenex as negative. I went on to have the DNA Connexions test and it came back positive for borrelia burgdorfori and ehrlichia chafeensis.

How could a positive DNA test be discounted? I thought DNA would be irrefutable evidence. I was told that if the DNA test came back positive that it was 100% accurate, but that if it came back negative you could still have Lyme.
Posted 8/4/2017 2:54 AM (GMT 0)
Hi WalkingbyFaith - welcome!

Could you share more information about the previous tests? What bands were specific on the LabCorp and Igenex WB?
If there were lyme 'specific' bands - then that is enough to diagnose someone with Lyme disease - if they have symptoms that are indicative of LD.
Do you have the results still?

The DNA Connexions lab hasn't done Validation Studies. I don't know why they don't do them so the lab is accepted as a valid place for testing LD.

If you get a PCR positive - it means the dna of the bacteria was identified in the sample.
But, negative may not mean negative.
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