Researchers’ discovery may explain difficulty in treating Lyme disease (new treatments discussed)

[cigana]

The book "Cure Unknown" by Pamela Weintraub gives a very good account of the corruption and controversy surrounding chronic Lyme.

 

[duncan]

@Hip, Re: Denying or discounting patient reports following acute Lyme.

Frequently, there is a lull in symptoms between acute and disseminated phases. This may be attributed to treatments; sometimes it could be the natural progression of the infection.

After these respites, should symptoms return, IDSA followers may claim the symptoms are not related to the initial infection. This holds true even if the sufferer remains in compliance with 2T dogma. Far too often, such symptoms are dismissed as hyperbole or the results of over active imaginations. Nothing more than "the aches and pains of every day living".

But can this happen even as an extension to acute presentation? Yes. Clinicians that subscribe to the IDSA perspective may simply tell the patient that these symptoms are merely residual, lingering signs of the eradicated infection, and that those symptoms will dissipate within a couple of months. When, at the end of that period, Lyme symptoms persist, such doctors will resort to the same party line I just noted above, namely they will say the symptoms are not related to the initial Bb infection, or the patient is imagining or exaggerating them.

 

[Hip]

I would suggest to check out the Oscar finalist documentary "Under Our Skin", which narrates the convoluted story of Lyme disease from the perspective of patients and the doctors that treat them.

The insurance industry lobby has used the same practices to deny ME/CFS and Chronic Lyme. Some articles that you may find enlightening:

The book "Cure Unknown" by Pamela Weintraub gives a very good account of the corruption and controversy surrounding chronic Lyme.

I don't have Lyme myself, and have not really got the energy or focus to read a whole book on Lyme corruption. I would just like to get a few names of the individuals most suspected of corporate collusion and corruption, ie, the Simon Wesselys of the Lyme world, and some direct evidence of their links to the insurance industry.

 

[msf]

I bet some patients will be desperate enough to try the anti-cancer drug, if they can get their hands on it.

 

[msf]

Hmm, an anti-cancer drug working in Lyme, I wonder if there are any other examples of this...

 

[Antares in NYC]

I don't have Lyme myself, and have not really got the energy or focus to read a whole book on Lyme corruption. I would just like to get a few names of the individuals most suspected of corporate collusion and corruption, ie, the Simon Wesselys of the Lyme world, and some direct evidence of their links to the insurance industry.

Hi Hip,
The magazine articles I posted in my previous post are great reading, and will give you a clear insight on the Lyme controversy. If you just want a quick list of names and examples of collusion, ties to insurance industry, and holding patents on Lyme diagnostics and treatments, here you have some:

http://www.openeyepictures.com/references/UOS2_claim_references_3.pdf
http://www.openeyepictures.com/references/UOS2_claim_references_2.pdf
http://www.openeyepictures.com/references/UOS2_claim_references_1.pdf

http://www.prnewswire.com/news-rele...sa-guidelines-review-panelists-300069030.html

http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

http://archive.poughkeepsiejournal.com/Interactive/lyme_ties/

It's always the same dozen individuals, and despite the (botched) investigation from the CT attorney general, they remain in their same posts to this day.

 

[Hip]

@Antares in NYC
I cannot see any connection between the insurance industry and the Infectious Diseases Society of America in your above post, nor in any previous posts, contrary to what you and @duncan said about insurance industry being linked to IDSA.

I fact, there does not seem to be much evidence at all of bad politics or corporate collusion in the IDSA, at least from my cursory glances at these links, when it comes to the controversy about the existence of chronic Lyme.

Some IDSA panel members have links to Lyme diagnostic testing companies, or Borrelia vaccine companies, which may be an inadvisable state of affairs; but I cannot see how this directly relates to or has any bearing on the controversy about the existence of chronic Lyme.

 

[Antares in NYC]

@Hip I should have specified "conflicts of interests." For more details on collusion the book from Ms. Weintraub is a good start. "Under Our Skin" is also a great source. Those links I posted showed the conflicts of interest that the CT attorney general uncovered in his 2008 investigation.
You don't think that Gary Wormser getting $1.5 million from Pasteur Mereiux Connaught to run Lyme OspA vaccine trials is problematic when he's the chairman of the IDSA Lyme guidelines committee? He then excluded from review all dissenting voices and studies pointing at the chronic nature of Lyme, so those voices never participated in the production of the official guidelines. This is ok?

 

[Hip]

You don't think that Gary Wormser getting $1.5 million from Pasteur Mereiux Connaught to run Lyme OspA vaccine trials is problematic when he's the chairman of the IDSA Lyme guidelines committee? This is ok?

If there were high level of adverse events from the vaccine I can certainly see this as being problematic; however, that is an issue of vaccine safety. As far as I can see, it is unrelated to the controversy of the existence of chronic Lyme disease.

I am still interested in any evidence that could demonstrate bad politics or corporate manipulation of the scientific investigation of chronic Lyme.

 

[duncan]

Hip, I appreciate your interest. I suggest you read Pam Weintraub's book, and see Under Our Skin. You have been directed to two good sources. You could also do a little of your own homework to satisfy that interest you've expressed. I would recommend some of the Lyme-dedicated forums. Or, do some googling. Antares has acted in good faith and tried to provide you with evidence of politics in chronic Lyme, and you find that insufficient.

If your interest isn't strong enough, I understand. Surprisingly, I am ok with that.

 

[Ema]

The 2008 MA antitrust lawsuit found that the members of the IDSA panel that deny the existence of chronic Lyme disease had unacceptable conflicts of interests in several areas, not just to the insurance industry.

"While conflict of interest abuses related to medications used to treat diseases are well known, conflicts may extend to any commercial area of medicine.

As pointed out in a previous forum [7], the IDSA Lyme guidelines restrict the definition of the disease and mandate laboratory testing. Guidelines that restrict the definition of a disease can favor vaccine developers when they serve to increase the reported rate of effectiveness for a vaccine.

Guidelines that mandate testing for diagnosis of a disease promote the interests of those who hold patents on diagnostic tests.

Guidelines that deny treatment to patients further the financial interests of insurers and their consultants.

Attorney General Blumenthal found that the IDSA Lyme guidelines panel had financial conflicts of interest in each of these areas."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/#!po=49.1935

 

[duncan]

Ema, you are an Ace in my book.

 

[Antares in NYC]

If there were high level of adverse events from the vaccine I can certainly see this as being problematic; however, that is an issue of vaccine safety. As far as I can see, it is unrelated to the controversy of the existence of chronic Lyme disease.

I am still interested in any evidence that could provide evidence for bad politics or corporate manipulation of the scientific investigation of chronic Lyme.

I appreciate your inquiry, but I would refer you to some of the early sources we mentioned for more detailed info on the shady practices of the IDSA/CDC in their handling of Lyme. Those books and documentaries do a much better job than I could possibly do. Mind you, our issue is not with the IDSA as a whole, but their specific handling of Lyme.

Overall, it was about the vaccine, and keeping the disease definition within the narrow margins set by the fda to qualify as such (no seronegativity, no chronic or persistent infection post treatment). Funny how the majority of the panel would profit if such vaccine made the market. And yes, there such adverse events with the Lymerix vaccine that the fda had to take it off the market.

Connecticut Attorney General Richard Blumenthal investigated the IDSA panel members for possible violation of antitrust laws and conflicts of interest.

Of the 14 panel authors of the first edition guidelines:

• 6 of them or their universities held patents on Lyme or its co-infections,
• 4 received funding from Lyme or co-infection test kit manufacturers,
• 4 were paid by insurance companies to write Lyme policy guidelines or consult in Lyme legal cases, and
• 9 received money from Lyme disease vaccine manufacturers.

Most of these folks were involved in more than one conflict of interest. These same folks blocked any opposing researchers from joining the panel, and then had the chutzpah to reference their own work in more than 50% of their bibliographic quotes to support their findings. In market practices, this is what they call a CARTEL.

 

[Hip]

Hip, I appreciate your interest. I suggest you read Pam Weintraub's book, and see Under Our Skin.

I was rather hoping that someone here with Lyme disease would have read the background material, and could summarize it.

Overall, it was about the vaccine, and keeping the disease definition within the narrow margins set by the fda to qualify as such (no seronegativity, no chronic or persistent infection post treatment). Funny how the majority of the panel would profit if such vaccine made the market.

A vaccine is about preventing the disease occurring in the first place. So I don't see how disease definitions of post-treatment Lyme disease syndrome come into this. Even if you just develop acute Lyme, it means the vaccine has failed.

I still can see no financial motivation on the part of the IDSA for refusing to accept the existence of chronic Lyme. That, as far as I can see, is the major issue for Lyme patients: who accepts and who does not accept the existence of chronic Lyme.

not just to the insurance industry.

I have been Googling a bit myself, and cannot find any insurance industry links at all so far.

 

[Dufresne]

Connecticut Attorney General Richard Blumenthal investigated the IDSA panel members for possible violation of antitrust laws and conflicts of interest.

Of the 14 panel authors of the first edition guidelines:

• 4 were paid by insurance companies to write Lyme policy guidelines or consult in Lyme legal cases, and

Isn't this the money shot?

 

[msf]

Well, here is one example, confirmed by PCR: http://www.ncbi.nlm.nih.gov/pubmed/23417373

 

[duncan]

Hip: "I was rather hoping that someone here with Lyme disease would have read the backgound material and could have summarized it." Seems to me people have been trying to summarize points for you for over a day now, but you keep insisting on more.

Hip: " A vaccine is about preventing a disease in the first place." In part, but it's not necessarily just that. It is also about making money. The Lymerix vaccine story was relevant because of the potential conflicts of interest involved, but also because of the firestorm caused when some recipients reported adverse side effects. Those complaints had an impact on the revenue stream. The product was pulled from the market.

Hip: "I still can see no financial motivation on the part of the IDSA for refusing to accept the existence of chronic Lyme." Can you see the financial motivation on the part of Insurance carriers for refusing to accept the existence of chronic Lyme? Yes?

Hip: "...the major issue for Lyme patients: who accepts and who does not accept the existence of chronic Lyme." For many, this is certainly a major issue. But it is far from being the only issue. Also disputed is the very definition of what constitutes a positive diagnosis of Lyme disease - for instance, whether IgM positive patients a year into the disease constitute Lyme disease, or whether two IgG bands (or three or four) that are specific to Bb are sufficient. Remember; even the IDSA acknowledges that once Borrelia disseminates, it is harder to treat. So every time someone is infected and they don't receive treatment, there is a chance the disease will progress and cause damage.

Then there is the poor characterization of Lyme disease symptom clusters, the dismissive or minimizing qualifications. Let's not forget, too, the rigid adherence to diagnostic criteria that were designed 20 years ago for surveillance purposes, not clinical evaluations. The screening mechanism that by some accounts is no more accurate than a toss of a coin.

There is also the lack of large and meaningful controlled studies into the efficacy of long term treatments. Or the tendency on behalf of mainstream Lyme enthusiasts to embrace circular logic in their bid to justify the efficacy of current diagnostics. Ditto for current treatments.

Need more? Well, there is the appalling risk doctors willing to treat outside of IDSA protocol assume each and every day - risks of being investigated by state medical boards, of losing their license to practice medicine.

Then there is what the CDC promotes as post-treatment Lyme disease syndrome, not to be confused with chronic Lyme. The latter should represent continued infection. PTLDS presupposes successful treatment, and the absence of Bb in the patient. With PTLDS, abx therapy is not recommended. So, if you get colored with the PTLDS brush, and you actually DO still have Bb, you are out of luck.

There is the whole co-infection debacle, but I'm going to stop here. I hope you will concede there is a lot more on the table for Lyme patients than "just" the dispute over chronic Lyme. Also, if you are going to reference "chronic Lyme" , you may wish to acquaint your self with how the IDSA/CDC define the term - it's not the same as most of the rest of the world uses it.

 

[Hip]

Seems to me people have been trying to summarize points for you for over a day now, but you keep insisting on more.

I ask for simple explanations and weblinks to evidence, but you keep referring me to reading books or watching films, which suggests that you do not really know the details yourself.

If you asked me for evidence of insurance company involvement in ME/CFS, I would not beat about the bush, but would give you the full details right away.

The Lymerix vaccine story was relevant because of the potential conflicts of interest involved, but also because of the firestorm caused when some recipients reported adverse side effects. Those complaints had an impact on the revenue stream. The product was pulled from the market.

As I mentioned before, it's not really directly relevant to the central controversy of whether chronic Lyme exists, and what chronic Lyme is caused by. I think this is the most important issue, and the issues of whether the scientific research on chronic Lyme has been biased or perverted by corporate agendas.

Can you see the financial motivation on the part of Insurance carriers for refusing to accept the existence of chronic Lyme? Yes?

Of course I can see that financial motivation. That is why I keep asking you for documented evidence of insurance company involvement. That's the info I am looking for — names of the insurance companies and the Lyme researchers or consultants on their payroll. But it is clear that you do not know this.

Then there is what the CDC promotes as post-treatment Lyme disease syndrome, not to be confused with chronic Lyme. The latter should represent continued infection. PTLDS presupposes successful treatment, and the absence of Bb in the patient. With PTLDS, abx therapy is not recommended. So, if you get colored with the PTLDS brush, and you actually DO still have Bb, you are out of luck.

As I understand it, post-treatment Lyme disease syndrome is the name given to all the symptoms that appear in some patients after an acute Lyme infection. Since we do not know what causes these symptoms, we do not presuppose that they are due a chronic Borrelia infection. Post-treatment Lyme disease syndrome could be due to a chronic low level Borrelia infection, or perhaps due to some autoimmune process triggered by the initial infection. Or indeed both.

So post-treatment Lyme disease syndrome is an appropriately neutral term that does not presuppose any particular etiology.

Chronic Lyme does not seem to have any officially defined meaning, but I suspect most people use this term synonymously with post-treatment Lyme disease syndrome. That is the way I have used it in this thread.

Isn't this the money shot?

I looks like it might well be the money shot, but why can't I find any info online about these four people in the IDSA who were paid by insurance companies to write Lyme policy guidelines. That would be damning evidence, but I could find nothing about it online.

 

[Ema]

I looks like it might well be the money shot, but why can't I find any info online about these four people in the IDSA who were paid by insurance companies to write Lyme policy guidelines. That would be damning evidence, but I could find nothing about it online.

Why does it have to be this linear of a relationship? I doubt they would be stupid enough to directly pay someone to write Lyme guidelines but the hubris never ceases to amaze me.

I agree that it is odd that the panel members are not explicitly named along with the conflicts of interests that the AG Blumenthal found in his investigation.

But the absence of this information only suggests to me that the information has been suppressed, possibly as a part of the settlement agreement that the IDSA entered into...to prevent the antitrust suit from actually being filed and the findings becoming part of a public record.

I think it is odd to come to the conclusion that because the conflicts are not linear and well publicized, they just must not exist.

 

[duncan]

Yeah, and also, Hip, your understanding of PTLDS and chronic Lyme is incomplete. No. It's worse than that. It's ballsy wrong.

This is basic stuff, and I've grown tired of trying to learn ya.

Ok, one last time. But seriously, dude, if you're just trolling, let it go.

PTLDS refers to symptom clusters following any recommended IDSA treatments made to patients with confirmed Lyme. It is immaterial what stage Lyme. It is immaterial as to what the diagnostics show following treatment. It is immaterial what symptoms present. It is implied that the Lyme has been eradicated - which is why it was once just Post Lyme Disease Syndrome, but the folks at the CDC appeared to get a little more politically correct. So, yes, whether or not the continued symptoms are due to infection or autoimmune reaction or whatever is not definite, but you can bet the ranch that nine out of ten IDSA followers interpret guidelines as meaning Bb has been eradicated.

Chronic Lyme - as embraced by the IDSA and CDC, which was I asked you about - refers to cases of claimed Lyme by individuals who never had any proof of Lyme. This is ONLY the view of the IDSA/CDC.

Chronic Lyme for many in the United States does refer to persistent Lyme post treatment. Outside the US, chronic Lyme can be used interchangeably with late stage Lyme.