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Posted 5/25/2016 9:37 PM (GMT 0)
I love the forum, but on my good days I also like to read about what is being discussed and reported about lyme "out there in the world". I recently came across a shockingly disturbing IDSA-informed article on an otherwise progressive online news forum. I'm not going to post a link to it because it's worthless. It was based on the Wormser IDSA lies.

So, I got busy posting comments - along with a pleasantly surprising number of other people poking holes all over that pseudojournalistic piece of trash. I don't always do this because it can sometimes be a little stressful reading. Other times, it's very cathartic to spread the truth.

Another commenter also provided really great responses and we struck up a conversation. He shared with me that he had actually been in the middle of collaborating with a different reporter at the same organization, when all of a sudden his reporter went cold, communication stopped and then this new article was published.

The same day I saw that HuffingtonPost.com published an interesting news story about top-level restructuring at this very same news organization.

Very interesting and likely the very tip of a very interesting iceberg...

Excerpt:
"According to the Society of Professional Journalists, “ethical journalism strives to ensure the free exchange of information that is accurate, fair and thorough. An ethical journalist acts with integrity.”

Unethical journalism may be committed intentionally or by accident, but the resulting disinformation or misinformation can be potentially damaging either way. In the case of public health, the results can be disastrous.

An article by Sydney Lupkin, published by VICE News on May 18, is a troubling example of this.

The story, with its click-bait headline “If You Think You Have Chronic Lyme Disease, Most Doctors Say You’re Wrong,” is written in partnership with MedPage Today, which is the name of a publication by the Infectious Diseases Society of America. The IDSA, discussed in the VICE article, campaigns aggressively against Lyme disease research and against proper patient care. Curiously, on the MedPage Today site linked to the VICE article, the “all infectious diseases” page lists everything from Ebola to HIV and even the IDSA—but it does not mention Lyme or any other tickborne disease. This is a peculiar oversight given that the CDC names Lyme as the third most prevalent infectious disease in the country. In 2008, the Attorney General of Connecticut filed an antitrust investigation against the IDSA and determined a number of serious concerns."

www.huffingtonpost.com/david-michael-conner/lyme-wars-journalists-are_b_10093494.html

-p

Post Edited (Pirouette) : 5/25/2016 4:06:22 PM (GMT-6)

Posted 5/25/2016 10:17 PM (GMT 0)
I saw the article you are talking about on Facebook and had a 'good time' posting lots of information to help those that were actually interested in learning about find the truth. Lots of scientific articles are out there now to help show the truth of the matter.

Thanks for adding in your two cents!! I always appreciate anyone that understands the truth posting it in response!
Posted 5/25/2016 10:23 PM (GMT 0)
AWESOME T! No doubt you enlightened some.

I tell ya, the internet will prove to be the worst thing to ever "happen to" the IDSA.

HUGE ;)

A lot of people here (and out there) are struggling on a day-to-day basis just to get through treatment. But the more the average Joe is educated about the truth (and sadly, it often comes by way of internet articles) the less power the IDSA machine has.

I know there are good links in the "new to lyme?" thread but one thing I'd like to do some day is to colocate links and other information easily included in article comments so that we can all be proactive in calling out the truth when we're able to.

I've also learned a lot from other commenters who have done good research.

And i know you have compiled good info.

Some day... will get on this. LOL

-p
Posted 6/20/2016 4:57 PM (GMT 0)
i'm glad the IDSA has figured out that 2 years after my tick bite i'm not actually infected anymore yippee! the next followup needs to be then why do i feel like crap every day? must be all in my mind maybe i need a shrink!
Posted 6/20/2016 6:16 PM (GMT 0)
Rikky1, better not do that, lol! They already think that most of us need a shrink! That is why we can't walk, see, hear, think and on and on! If I were an evil person I would wish everyone of the naysayers got Lyme! Then we would start seeing some change! But alas! I am not and wouldn't wish this on anybody.
Posted 6/20/2016 10:05 PM (GMT 0)
When the CDC is finally coming around with much more accurate estimates and basically admitting testing is crap, diagnose based on symptoms, then a corner has been turned.

The lyme cover up agenda needs to just give up when the CDC finally comes around.
Posted 6/20/2016 10:44 PM (GMT 0)
But the CDC is actively participating in the cover up. They created a group called Lyme Corps - and it's pretty scary and should be against the law what they are doing. They call doctors and hospitals and make sure they are using the "proper" (read that as IDSA) treatment guidelines to treat these infections!!! Those guidelines have been removed from the National Guidelines Clearinghouse! They should NOT be followed, and yet, those people are still out there, still calling around insisting that the IDSA way is the only way!

/nphic.confex.com/cdc/nphic14/webprogram/Paper35413.html


/uvmmedicineblog.wordpress.com/2015/06/11/joining-lyme-corps-to-raise-awareness-in-vermont/


/learn.uvm.edu/blog-health/lyme-disease-awareness-in-vermont


http://www.healthsci.jmu.edu/pa/features/lymecorps.html
Posted 6/20/2016 11:50 PM (GMT 0)
dacarte3--

The CDC is most definitely continuing the misinformation, subterfuge and coverup. Don't be mislead. You might want to read up on this quite a bit more. The CDC is a large faction of many departments. Some within the CDC will cite the revised numbers of "new cases" (which by my calculations are still over 200% low) and the actual number cases of people who aren't even being tested is even more difficult to calculate, and likely higher.

Great importance has been placed on the CDC's "new cases" numbers because the party line is that lyme is "hard to catch, easy to diagnose and simple to cure". But we all know otherwise. None of these numbers include the millions of people who aren't "easily cured" and suffer long-term problems.

Part of the controversy (and misinformation) is rooted in the misunderstanding of what the CDC does. They have developed a system that merely reports "surveillance" of infectious disease trends across the country, including lyme infection. The CDC's job isn't to document or report all "new cases" of Lyme. That's just what they and the IDSA and ALDS wants you to believe. In fact, the criteria developed in order to provide this surveillance, by the CDC's own admission, does not capture all new lyme disease cases every year.

This surveillance criteria, which is highly specific since it is geared towards their surveillance purposes, is one of the many reasons the testing methodologies are so inaccurate. Some within the CDC will point toward the CDC's own statement that the surveillance criteria is not conducive to diagnosing lyme disease, which should be a clinical diagnosis and others within CDC will claim the tests are absolute and the only indicators necessary.

I've been digging into a lot of this research and there's more. I'll share soon, I hope.

-p
Posted 6/21/2016 1:29 AM (GMT 0)
I know I know. I was just using hyperbole, that even the CDC had to admit a few things so you know the cover up is over. The sarcasm and hyperbole fell flat I see.

I was thinking the other day about testing. I was thinking about how the ELISA and IFA test are actually more "reliable" than the western blot. And I was thinking how the western blot is read.

It's very suspect.

If you are positive on the ELISA or IFA it means the test found lyme antibodies. Okay, then we're done right? No, you then have to "confirm" it with a western blot.

What kind of non-sense is that? An antibody test found lyme antibodies, so we are "confirming" it why? Oh do you mean because the western blot for lyme is really crappy therefore it will only pick up a band or two and not FIVE.

Why FIVE? A trace of lyme is a trace of lyme. That's like seeing foot prints in the sand of a human foot but it's not real unless you actually see the human being itself? Dumb.

It's SOOO rigged to make it nearly impossible to be tested positive. This was done on purpose.

And by the way, I live 20 minutes from the CDC HQ. I'll throw some tomatoes at the buildings for you guys.
Posted 6/21/2016 2:15 AM (GMT 0)
Ha! THANKS!!!

-p
Posted 6/21/2016 2:22 AM (GMT 0)
dacarte3 - I wouldn't choose the IFA or ELISA over he WB. I believe they are even more unreliable.

i tested negative with the IFA - then tested positive on the Igenex WB.

At least with the WB - if you're not positive, you may show an IND on lyme specific bands, which would be significant. I think there are more 'chances' to get an indication with the WB.

Sorry - this is Off topic.
Posted 6/21/2016 2:32 AM (GMT 0)

Girlie said...
dacarte3 - I wouldn't choose the IFA or ELISA over he WB. I believe they are even more unreliable.

i tested negative with the IFA - then tested positive on the Igenex WB.

At least with the WB - if you're not positive, you may show an IND on lyme specific bands, which would be significant. I think there are more 'chances' to get an indication with the WB.

Sorry - this is Off topic.

Sorry I should have been clearer. I mean when the ELISA or IFA is in fact positive then it's "reliable", so why a Western blot "confirmation" afterwards where you need FIVE bands? It just seems the CDC rigged the testing so that only a fraction would pass their test.
Posted 6/21/2016 12:51 PM (GMT 0)
CDC rigging the tests--sure does seem to be suspicious! Throwin' tomatoes-ha!

I'm doubtful after all the years of denial, it will ever change. And imagine--these big, powerful organizations are supposed to work for us!
Posted 6/21/2016 7:51 PM (GMT 0)
Work for us. Oh that is a good one. They are all self-serving and out of control, like most of our government. Once you get to a certain point these groups do not see individuals. They just see numbers. Why they are ignoring some of these numbers is beyond me. I do not know enough about the science behind the testing, but it seems to me if there is any indication of Lyme and co. then you have it. Don't label me with some arbitrary autoimmune diseases because you don't believe in chronic Lyme.
Posted 6/22/2016 3:51 AM (GMT 0)
Bat -
I totally agree. I just posted this in another thread, bears repeating:

The CDC criteria for Lyme testing that the CDC developed is based on case definition that serves the purpose of case surveillance, not diagnosis. Not only did the CDC eliminate two Lyme specific bands (31 & 34) but they determined a tighter parameter by requiring multiple positive bands. But this criteria has nothing to do with diagnosing.

For this and other reasons, the CDC clearly states diagnoses must be clinical with the support of--not reliance upon--testing. All LLMDS know this. Some labs have started including clarifications in the lab result narratives but mass confusion remains. And Denikeef explained why MDs are afraid to make the correct diagnosis. That the CDC itself and the IDSA haven't done more to clarify this is exactly why people are demanding an investigation into it. Do a srearvh for Tuttle petition!
Posted 6/22/2016 4:32 PM (GMT 0)
In case u didn't hear, google is changing its online health search (hmmm). I just did a casual LD search & a LD description came up with 200k estimates with the statement that most recover with abx treatment. The next google response has the CDC site, & then the latest NJ Housewives TV star who just found out she has lyme, that "thankfully needs no treatment." Well-lucky (?) her!

And interesting, on the latest "fab" rehab LD Boston Hosp (emphasis on "rehab" with "treatments" of cranial massages & counseling), they DO acknowledge poor testing, new strains not even in the current "testing" & then offer a "compassionate treatment plan," ie ignore the infection & not fix the root problem!

On this site, the propaganda that borrelia might withstand abx...This, along with the current dogma, parroting of abx resistance, which ultimately disallows those who may want to have abx treatment & those who DO benefit from abx.

Before all the non abx folk jump on that, know that freedom of choice is important, as this is not a one size fits all illness. And that once again the misinformation continues, with double talk of LD - the misinformation effects everyone!

Below, from this site (I, also, do not want to link) that admits LD can be a devastating illness, yet, like a bandaid on cancer, they offer their wonderful non-healing services:

"There are a number of reasons patients may develop complications from Lyme disease – untreated or undertreated infection, autoimmunity, and inflammation. If the disease is unrecognized in the early stages patients can develop late infection from Lyme. There are many strains of the Lyme bacterium and our current tests are inadequate, making diagnosis rely on clinical symptoms. The current 2 tiered diagnostic tests fail to catch early Lyme disease consistently. In a recent study by the experts at CDC, the current test failed to test positive in patients with early Lyme disease who had a confirmed erythema migrans rash, missing 69% of the individuals tested.

The current 2 tiered Lyme test also does not detect other species of tick borne Borrelia infection that are present in the US such as Borrelia miyamotoi, Borrelia lonestari, and Borrelia hermsii. Due to the current inadequacies of testing, patients are likely to develop symptoms of late Lyme Disease and injuries to multiple organ systems.

There are several theories on why patients remain ill. Some of the proposed mechanisms are persistent infection, where the spirochete might survive current antibiotic regimens and remain in the system, continuing to irritate the immune system. Other studies illuminate autoimmune dysregulation after an infection and research ongoing inflammation.

The ____ Center nurtures relationships with referring providers to help arrive at the most appropriate care plan and plan a compassionate and comprehensive, evidence based and patient centered care."

Post Edited (happyjo) : 6/22/2016 12:45:14 PM (GMT-6)

Posted 6/22/2016 5:10 PM (GMT 0)
All I can do as I read this is snort in disgust and shake my head. The day will come when this all comes out into the light - just like the truth about HIV/AIDS finally came out. Until then, we have each other to lean on for support and help at least.

We have to keep spreading the word whenever we have the opportunity. I know that some don't want people at work to know, and although I think it's wrong for that situation to occur (fault of the workplace), we need to do whatever we can, whenever we can. The more people we reach with accurate, helpful information, the more our own "voice" will grow as well. Even my Mom - who denied anything was wrong with me while growing up with these infections, has started posting stuff on Facebook and telling others!! She does run most things by me first to make sure she's not handing out bad information, fortunately. wink
Posted 6/22/2016 6:08 PM (GMT 0)
And "lymphodenopathy" found with HIV - most "autoimmune" here also suffer. The physical & political similarities are profound.

And while people suffered with HIV/Aids, squabbles & intentionally disseminated misinformation was (& perhaps still is) pervasive. Do most know that it was allegedly the French who discovered HIV, while the Americans took credit, in order capitalize on it?

Right now we can share some here & with FB, etc, but the trend with the new Google search engine, who knows the extent of targeting individuals, discrediting & misinformation?

"Who discovered HIV: Gallo, Montagnier or both?":
m.dallasvoice.com/who-discovered-hiv-gallo-montagnier-or-both-1021402.html?mobile-redirector-transfer=true

New York Times "FRENCH SUE U.S. OVER AIDS VIRUS DISCOVERY":
www.nytimes.com/1985/12/14/world/french-sue-us-over-aids-virus-discovery.html
Posted 6/22/2016 6:35 PM (GMT 0)
Trav - that is so cute about your mom. I love that. Kudos to her!

happyjo--
You posted a lot of stuff I want to ask questions about or respond to! So bear with me:

happyjo said...
In case u didn't hear, google is changing its online health search (hmmm).

Huh? What do you mean. Does this have anything to do with the next thing you wrote about the sites/posts your search revealed? I'm confused...

happyjo said...
I just did a casual LD search & a LD description came up with $200k estimates with the statement that most recover with abx treatment.

Do you mean 200k new cases? or $200k spent?

happyjo said...
On this site, the propaganda that borrelia might withstand abx...This, along with the current dogma, parroting of abx resistance, which ultimately disallows those who may want to have abx treatment & those who DO benefit from abx.

Before all the non abx folk jump on that, know that freedom of choice is important, as this is not a one size fits all illness. And that once again the misinformation continues, with double talk of LD - the misinformation effects everyone!

I just want to directly respond to a couple of misunderstandings that I know I had and have been repeated here about abx and resistance. I've been doing a lot of digging for info lately and have found some good info I want to share.

There are several reasons why abx treatment doesn't work--I'll summarize here because I think people get these confused and it's natural to generalize a "takeaway" that isn't necessarily accurate:
  • Generally, 4 wks of abx, even right after initial infection, is often not enough to significantly kill off the pathogen--the doses aren't high enough and/or the prophylaxis isn't long enough.
  • Many people don't get treated right after being infected so by the time people start tx the spirochete has had a chance to infiltrate the whole body, making the 4-wk protocol even less effective--just too much to kill
  • Studies have shown that components of the Bb microbe can "turn off" mechanisms of the immune system so that it doesn't recognize the Bb as an invader and/or won't function to target it.
  • Studies have shown that when threatened (by antimicrobials or the immune system) the Bb spirochete leaves the blood stream and burrows into tissues, organs so that neither antimicrobials (and I believe this includes herbal remedies) nor the host's immune system can reach them.
  • Some LLMDs like to pulse abx to trick the spirochete into coming out to play and then zapping them again--this has been proved to be more successful than continuous levels of abx (although I've heard that herbal remedies don't need to be pulsed, which would suggest that they have a different impact than pharmaceuticals on the spirochete's behavior but I haven't found any evidence of that yet...still looking--this would be important).
  • Also, when threatened (by abx or immune system) spirochetes can morph into cyst or ball form, which can hide it.
  • Research showed persister cells (or L-form) of Bb has no cell wall, which render some abx (that are designed to attack the cell wall) but not all, ineffective.
  • Some people have Bb in the brain. The immune system doesn't produce antibodies in the brain. This is the reason to use a an antimicrobial that crosses the blood-brain barrier.
  • I'm also going to throw into this conversation what we all know--a protocol of only antimicrobials won't heal us--regardless if they are pharma or herbal. We need a very comprehensive diagnosis that includes other burdens on our immune system, a comprehensive detox program, and support of a healthy immune system, and healing and/or repair of many other body systems that are collateral damage from the infections.

The statements above are geared toward the question, "Why don't pharmaceutical antibiotics always work?" Very few of the studies on abx protocols studied the actual protocols used successfully by LLMDs--they picked random abx and random dosing and random protocols... I've come across a couple of statistics that insist the IDSA's own 28-day max abx protocols has never even been studied and that only 1 of 7 of the IDSA's treatment protocols were based on imperial data/research... I'm sure this is of no surprise to you.

MUCH more needs to be investigated regarding herbals. I just had a conversation w/ Traveler about this--there are so few studies done on herbals, for obvious reasons. But I think that's a missing piece of the statements above--is the issue pharmaceutical abx? Or is the issue the antimicrobial treatments in general that need to be supplemented in "x, y, or z" ways?

happyjo said...
Below, from this site (I, also, do not want to link) that admits LD can be a devastating illness, yet, like a bandaid on cancer, they offer their wonderful non-healing services:

I didn't capture everything you shared from that site... but I guess I'm missing your point. Most of that info is, in fact, relevant. So are you referencing their healing protocols that weren't included in that excerpt that you think are inadequate?

-p

Post Edited By Moderator (Traveler) : 6/22/2016 1:18:29 PM (GMT-6)

Posted 6/22/2016 6:58 PM (GMT 0)
Good grief... I forgot to include a statement referencing the whole point why I made the post above in the first place LOL... I didn't sleep last night. Sheesh.

Anyway, I was trying to clarify that abx DO work... but the only work if the right ones are used correctly within a much, much broader protocol. And all this has to be tailored to the individual's needs, as happyjo stated. It's all quite complicated and none of it has ever been--nor will ever be "proved" in imperial studies because it's just way too complex.

-p
Posted 6/22/2016 7:22 PM (GMT 0)
Wonderful post full of lots of great information, P!
Posted 6/22/2016 7:25 PM (GMT 0)
TV news today reported that google is changing its health search engines. I decided to test & see for myself. I meant to say the 1st search engine site states "200k" Lyme infected (I revised my typo). As you have mentioned, this # is perhaps a wee bit off?

Integrated medicine is the optimum, including abx for those who favorably respond. The site I quoted from seems (?) to lean towards treating the symptoms, not the underlying. The last sentence stating "evidence based" makes me question--of course, we cannot willy nilly treat w/o analyzing...

But exactly how does this center provide "evidence based medicine" when also stating that testing is faulty? What evidence then are you using--that someone comes in with brain swelling due an infection & you are going to massage it or counsel it away??

Post Edited (happyjo) : 6/22/2016 1:29:46 PM (GMT-6)

Posted 6/22/2016 7:31 PM (GMT 0)
OK - so you're saying that they don't mention antimicrobials, specifically and how they are implemented? Sorry if I'm being dense, I didn't sleep last night LOL.

-p
Posted 6/22/2016 7:49 PM (GMT 0)
I also am w/o sleep & typing on a one fingered iPad, making lots of typos! Yes-antimicrobials! And/or antivirals--that sez it!

And perhaps someone will go to this new wave center & the establishment will not only accept their insurance, but treat their whole body. Wouldn't that be lovely? I eagerly await the medical community transformation, but in the interim, remain with my hackles up.
Posted 6/22/2016 10:23 PM (GMT 0)
I'm with ya.

In this "piece" I am writing about all the issues surrounding Lyme, I've saved "the players, the game" for last. I've already pulled together a lot of info and boy, it is stressful to read. The question I am trying to answer is, "what is the benefit of keeping and making so much of the US population so I'll?" What I am finding is alarming... Hopefully will share this info soon.

-p
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