posted
See subject.
Posts: 360 | From Massachusetts | Registered: Dec 2012
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
????
See the subject? How about a link? If you have been around since 2012, you know the answer presumably and are just alerting us to this discussion. Right?
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
If you are not already aware of the controversy over lyme treatment and you or a loved one has it then you would be well advised to study the subject.
ILADS believes in chronic lyme disease, IDSA does not. Chronic lyme has considerable evidence to support it's existence but it is ignored for many reasons.
Some of the studies used by the IDSA to deny treatment for chronic lyme disease have errors in them. For example, one was designed such that in order to show significant improvement with treatment, lyme patients would need to perform better than the general population!
In a nutshell - The study is designed to show improvement only if the cognitively impaired lyme patient can perform better than the general public. That is only one of many errors. Those are the studies that are being used to deny treatment for chronic lyme patients! http://lymedisease.org/news/lyme_disease_views/retreatment-study-flawed.html
posted
The CDC will leave you undiagnosed if you don't do a two-tier test, if the first tier test isn't positive and if you don't get 5 positive bands on an IGeneX test. Plus they like to dismiss the IGeneX lab and are currently knocking the Advanced Labs culture test. Then if positive, you get 30 days of antibiotics. What's there to like?
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Lymedin, lol!
Bob, because they are following old info and flat out wrong, so they deserve the bashing they are getting. Watch Under Our Skin (explains the lyme controversy well).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Aside from the CDC's boy toys requiring 2 positive tests to diagnosis Lyme, and insisting a tick can not transmit Lyme in the first 24-48 hours of being attached, and insisting the tests are accurate (but only the ones they have patents on)...
And insisting the failed vaccine was safe and effective, and denying anything but the cheapest antibiotics past 10 days to 2 weeks, the IDSA went even further to deny patients treatment in its guidelines that the CDC knows are garbage and still supports and promotes them.
For example, here is one section of the guidelines recommending against the use of the following treatment options, with insurers using these guidelines to deny payment.
Table 4. Selected antimicrobials, drug regimens, or other modalities not recommended for the treatment of Lyme disease.
Doses of antimicrobials far in excess of those provided in tables 2 and 3
Multiple, repeated courses of antimicrobials for the same episode of Lyme disease or a duration of antimicrobial therapy prolonged far in excess of that shown in table 3
Combination antimicrobial therapy
Pulsed-dosing (i.e., antibiotic therapy on some days but not on other days)
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh, and did I mention the fact the CDC doesn't believe in any treatment for chronic Lyme? To them it doesn't exist, therefore you and I don't exist.
What a lovely way for the government to spend our tax-dollars, while in bed with the IDSA.
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
WOW, there is sure a lot of blasting on their Facebook page. Was it always like this or did this start only after they reported the 300,000 new cases per year & perhaps because it is also May Lyme awareness month?
Also, I don't think any one country has proper protocols or treatment guidelines? Unless you guys know of any & can post links? So really the whole world is oblivious to the growing epidemic & is slowly learning the details.
Many countries abroad hate us & would have used this as propaganda. Some would have refuted us completely & made identification & treatment a priority, but I don't think that is happening. So is it fair to blame the CDC solely? Can we blame ALL THE GOVERNMENTS across the world?
Are they all guilty of hiding? Does Big pharma, insurance companies, or IDSA have their hands all over the world now (I don't think so)? We would have seen AT LEAST SOME countries doing what we deem as the right thing to do, but none can make this claim as far as I can see?
Posts: 2094 | From NY | Registered: Oct 2011
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
My personal opinion is that our CDC/NIH have a lot of influence all around the world. So these smaller countries figure they don't have the staff to investigate it in detail, so just follow the lead, right over a cliff.
Plus, this is expensive to treat and countries that have national health do not want such a big chunk of their dollars to be spent on tickborne diseases, so they are happy to write off these patients. Of course, with better testing and diagnosis, it would not cost much to treat at the early stage. But that does not seem to occur to them as a way of proceeding.
Do you ever get the feeling the whole world is crazy, and there are really only a few people in any field that really know what they are doing?
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
Hi folks, new here and thought I would add my HO to this discussion.
Here are some of the reasons why I think the CDC is not willing to change Lyme.
If there are 300K new diagnoses per year in a country with a 300 million population. What happens in 10 years. What percentage of the population is now infected?
With those figures in mind, it would be incredibly expensive for the ins. companies to pay for treatment.
Why would the CDC want to develop a more accurate diagnostic test if that 300K number goes up even more?
Big Phama would love it because of the revenue stream. They should be the ones hiring lobbyist to get Chronic Lyme established. They are the ones to financially benefit the most.
If the CDC recognized Chronic Lyme then next to follow would be ins. companies paying for treatment. This cost would be HUGE and it would also be passed down to everyone with Ins.
Also, if Chronic Lyme is recognized and more people are accepted for disability Would it not cripple are already failing SSI program? Imagine 10% of the population applying for SSI because of Lyme.
The Government has statistical analysis on all this I'm sure, and they run the CDC.
I'm afraid that eventually if your diagnosed with Lyme, you would not be eligible for life ins, at least not at an affordable price. Also your ins bill would be astronomical, to the point it's unaffordable.
Just another view point:)
Posts: 29 | From 42.782745, -71.280301 | Registered: Apr 2014
| IP: Logged |
If the CDC recognized Chronic Lyme then next to follow would be ins. companies paying for treatment. This cost would be HUGE and it would also be passed down to everyone with Ins.
Also, if Chronic Lyme is recognized and more people are accepted for disability Would it not cripple are already failing SSI program? Imagine 10% of the population applying for SSI because of Lyme.
The Government has statistical analysis on all this I'm sure, and they run the CDC.
- I've always felt that this was the biggest issue when it comes down to it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
NH_Hiker, I See similar issues with those arguments.
More people with Lyme would just cripple our already crippling system & it already has a big impact due to various chronic infections.
I am beginning to think more & more that it was incomplete studies on the CDC part & it just cascaded to what it is today. They had to defend themselves in order not to look bad & as a result millions suffer.
I am surprised the CDC gives warnings about other diseases, as they should. Just not Lyme, their biggest blunder!
posted
I look at the CDC as if it were the Titanic. It can not maneuver quick enough to avoid a catastrophe.
It will take a long time to turn a vessel so large. Progress will be S-L-O-W! Unfortunately many will suffer emotionally, physically and financially in the interim.
I agree Lymedin2010. Now if Chronic Lyme has a "face", the SSI would not be able to deny coverage. If they did, any attorney would be able to overcome it in short order.
Posts: 29 | From 42.782745, -71.280301 | Registered: Apr 2014
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Employees of the CDC are allowed to earn profits from patents. That is the crux of the matter in my view. MONEY!!!
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
"I look at the CDC as if it were the Titanic. It can not maneuver quick enough to avoid a catastrophe."
Damn, that is a good analogy, I may have to use that one
TerryK, when they first discovered it & made the guidelines there weren't as many infections or no one knew the extend & the various presentations. I don't even think the CDC was smart enough to see all this & it took many scientist on many levels to put the pieces together.
I don't think the CDC would have wasted research money on Lyme & overall research money has been VERY limited over the years.
There were bigger issues at that time & why not implement their earn profits from patents on AIDS/HIV or any other disease that was more prevalent at that time. Why did LYME turn out this way?
Lyme is far more complicated than any other disease & on many levels. For such a slow moving snail to come to realize the many different presentations of Lyme would be too much to ask for I think, especially when they have their limited resources in various other disease niches.
Posts: 2094 | From NY | Registered: Oct 2011
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
The CDC knows full well what they are doing. We are not victims of a slow moving bureaucracy but of greed.
I did not believe it at first either but I have seen enough convincing documentation to know that it is true.
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Lymedin - IDSA are the designers of the guidelines for lyme treatment and the CDC defers to them and refers to their information. They even refer to the seriously flawed studies that are used to deny treatment for chronic lyme disease.
The CDC is fully aware of the serious problems with those studies because they were involved in the IDSA hearing where that information was presented. They made it clear that they will go along with whatever the IDSA says.
Barbara Johnson of the CDC is one that was involved in the hearings and she also has patents for lyme testing. Lyme patients will not get proper testing and test evaluation as long as she is involved in controlling CDC recommendations for testing.
As far as research money - most if not all of it has gone to IDSA and their cronies. They do not design studies to try to help people with chronic lyme disease because they deny that it exists. Their denial is crazy in the face of the many studies that show persistent infection. https://workspaces.acrobat.com/app.html#d=sbb-EmpQrQTgrPoezLGreg
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
No reason what soever to believe that the CDC can be persuaded to change its course UNLESS forced. I still believe that the Tuttle petition in "activism" is one way of doing that. Have all the affected including family-members sign. Thank you
-------------------- hansemand Posts: 160 | From europe | Registered: Dec 2011
| IP: Logged |
posted
Good afternoon Bob G. I'm surprised you are so confused about CDC's disgusting Denialism. After all, you have posted many messages in the past, expressing your committed opposition to CDC and the IDSA Lyme committee's approach. I'll paste in a few examples below:
BobG Member Member # 39642
Icon 1 posted 16 August, 2013 09:15 PM Profile for BobG Send New Private Message Edit/Delete Post
Hilarious post for proposed remake of Wizard of Oz posted on CDC Facebook page. Go there to "Like"! Posts: 93 | From Massachusetts |
Registered: Dec 2012 | IP: Logged | Report this post to a Moderator
posted
So Bob, you are saying that after months of slamming CDC, and encouraging people to serve them some well-deserved ridicule, you suddenly no longer know whether CDC treatment protocols are accurate or not?
Are you on one?
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
| IP: Logged |
The CDC not only denies chronic Lyme , thus contributing to deaths , suffering and chronic illness. Also, they have not yet done anything to promote any research- information about the complexity of tick/vectorborne diseases at all.Including its tole in inflammatory disease.
Now they are going to host a webinar about persistant borrelia infection. Hidden agenda seems to be questioning the results of the xeno- dignosis study and the monkey study. There has been no initiative on the part of CDC for reserach with that perspective- None.
At the same time, the public is becoming increasingly aware of the neglect of the CDC.New types of borrelia are found in Florida transmitted by several kinds of -ticks. Ticks carry borrelia in Texas etc.
The insensitive westerblot test becomes even more meaningless. Has there been a warning from the CDC?? Nothing- Nothing at all.
THIS CYNICISM HAS TO BE STOPPED.SOME STATES HAVE MADE THEIR OWN LEGISLATION. FOR THE SAKE OF THE STATES WITHOUT AND FOR THE SUFFERERS IN THE WORLD ALSO VICTIMS OF CDC "PSEUDO-SCIENCE",
THE ONLY CHANCE SEEMS TO BE TO HAVE CONGRESS STOP THE MADNESS. SIGN THE TUTTLE PETITION IN "ACTIVISM".SO FAR SOME 20.000 SUPPORTERS.
THE CDC DOES NOT RELATE TO REALITY.FOR MANY PATIENTS HERE TRYING TO COPE WITH SEVERAL VECTORBORNE THINGS AT THE SAME TIME IS EXTREMELY DIFFICULT. CDC TREATMENT RECOMMENDATIONS!!! WHAT A NASTY NASTY COMMENT. COMMENTS HERE HAVE NO EFFECT.IF YOU FEEL REDICULED BY THIS BOB THEN TAKE ACTION.
In order for a vacine to make sense you must have a problem- Thus the revision of the annually infected- (and there is an even greater market in Europe).
Problems are many; does it work etc etc.But first and foremost, it seems that an entire massive group of chronic patients will be sacrificed and forgotten- left to redicule. Second; The vacine does not help against the many other pathogenes in ticks- problem not solved.And the CDC is still completely passive in that regard.
DO NOT LET THEM DO THIS TO PEOPLE.
Copy paste the link to the petition and email it to friends and relatives.
-------------------- hansemand Posts: 160 | From europe | Registered: Dec 2011
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
There are 100+ strains of B. burgdorferi in the US alone (at least...per lecture I attended last night there are more than 300 strains).
I am 100% certain that the "new" vaccine WILL NOT address/conquer the various strains of B. burgdorferi.
And I am 100% certain that this new vaccine WILL NOT address the myriad of co-infections associated with Lyme Disease.
SIGN THE TUTTLE PETITION IN "ACTIVISM"
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
posted
Lets take a quick glance at bartonellose.What does the CDC have to say?
They still dont accept it as a tick borne infection- It is , documented in Scientific publications by the leading scientists in the field.
Regarding treatment their info website is full of mistakes- Penicillins dont work against bartonella spp.
Bartonellosis is an infection (many many transmission routes- not only ticks) that is widespread and overlooked.
In combination with Lyme???
CDC is in denial in this field also.
-------------------- hansemand Posts: 160 | From europe | Registered: Dec 2011
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Beaches, I tried to get more info on the lecture you attended, number of strains, etc. but your inbox is full.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
There has been no attempts to explain the "correctnesss" of the CDC guidelines by Bobg. It makes no sense at all, unless the purpose is not legitimate debate.
Obviously, BobG does not find that CDC deserves the postings on the CDC FB page.I do.
In an old post BobG comments protests against IDSA in this way
posted 09-14-2013 06:14 PM Good. Give them hell!
Some 20.800 patients , for for whom this is life and death , agree. They have signed the Tuttle petition.
I believe the number should be much much bigger. Please help- sign the petition.
posted
Has any lyme organization estimated how many cases of lyme become chronic each year out of all those estimated to get the disease each year?
If you should have a link for this please post it.
Posts: 803 | From USA | Registered: Oct 2013
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I think it's important that every patient be able to question a lyme diagnosis. Even though I am a capable researcher it took me 2 years of solid research after getting an IgeneX positive test before I felt comfortable pursuing treatment.
It's very hard when our doctors are telling us to ignore test results that are not CDC positive. Then when we don't get the results we think we should get with treatment we may start to question whether the IDSA rhetoric is possibly correct.
I think it is smart to question everything when it comes to our health. I personally do not feel upset with BobG but just think perhaps he needs more information. Not hard to give more when the evidence for our point of view is so compelling.
BobG - If you have any doubts, feel free to ask questions - we will do our best to answer.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
@TerryK. I dont think anybody would chose not to discuss treatment aspects/failures/strategies etc including those of the CDC. The problem, however, is extremely complex, mostly because Lyme seems not to be the whole story.
CDC has refused to take on this complex field and still makes it extremely difficult for everybody to have medical assistance.
This needs to change- sign the petition.
-------------------- hansemand Posts: 160 | From europe | Registered: Dec 2011
| IP: Logged |
posted
Today cdc launches a webinar regarding animal models for testing in rel to CLD.They are going to critizise the studies that have proven that. A coincidence that this is taking place on the big event i front of IDSA ??
-------------------- hansemand Posts: 160 | From europe | Registered: Dec 2011
| IP: Logged |
posted
Guidelines of IDSa is now getting into the press for real.This is a piece from a paper recently. The petition is the tuttle petition in activism
posted
I don't know. I want better tests so we do know, but the CDC hasn't been very interested in that. I hope that the nano-trap antigen test or the xenodiagnosis will bring clarity to the issue.
Posts: 136 | From arlington, VA | Registered: Jun 2010
| IP: Logged |
posted
I'm not convinced that the lyme doctors are putting Lyme disease into remission or whatever they claim. I'd have to see some record of results, which would be hard to measure anyway.
What we need is a test and then a cure, not more antibiotics for the most part.
Posts: 136 | From arlington, VA | Registered: Jun 2010
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Applewine, I'm starting to think you're getting commission from this 'new' test.
And if you think a foolproof test of chronic verses new Lyme disease is coming out with the CDC's blessing, so everyone can test and be accurately treated, well, let's just say 'we'll see.'
Let's not forget they have a patent interest (yes, literal patent $$) to keep up the ruse of first a positive ELISA, then a positive WB,
then get your 2 weeks of Doxycycline, and you are cured!
Have you read the book 'Cure Unknown' by Pamela Weintraub
I suggest it.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
-------------------- hansemand Posts: 160 | From europe | Registered: Dec 2011
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"I hope that the nano-trap antigen test or the xenodiagnosis will bring clarity to the issue."
The problem with the xenodiagnosis is that even though the tick is born and raised in captivity, there's a chance it can still transmit other co-infections such as borellia miyamotoi.
Info about it here. From what I recall it's in the Q & A where the doctor says that you can be infected by these ticks.
posted
The Norvect conference www.norvect.no was held recently with names such as Sapi Macdonald Ed Breitschwerdt Peronne Miklosy, Dr H and Dr B. I believe videos will be availbale soon.
Chronic borrelia and treatmen failures were documented Again and Again.
Dont forget thew petition from Tutle
*edited name of practicing LLMD .. please alert us if one was missed*
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic