Tuesday, August 23, 2011

21 Letter: Antiscience and ethical concerns associated with advocacy of Lyme disease

Well, it's time for a little commentary on a recent publication which has been making the rounds in the Lyme disease patient community - this time on a letter which has been published to the Lancet recently. The letter is basically about those who believe Lyme disease can be a chronic, difficult to diagnose disease are part of an antiscience movement, and how the media, politics, and advocacy groups have supported unorthodox views concerning Lyme disease and other tickborne infections.

I'll post the excerpts in full first, and then a second time with my commentary interspersed.



Excerpts from: Antiscience and ethical concerns associated with advocacy of Lyme disease.

Auwaerter PG, et al. Lancet Inf. Dis. Aug 22 2011.

Aspects of Lyme disease advocacy are an important example of this antiscience movement. For the purposes of this Personal View, we will define this antiscience outlook to also include the promotion of pseudoscience and science that has weak credibility or validity because of fundamental flaws in its design or poor reproducibility.

For two decades, many Lyme disease activists have portrayed Lyme disease, a tick-borne infection, as an insidious, ubiquitous, difficult to diagnose, and often incurable disease, which causes mainly non-specific symptoms such as chronic fatigue, musculoskeletal pain, and neurocognitive dysfunction that can be treated only through the use of antibiotics for months or years.

As with other antiscience groups, some Lyme disease activists have created a parallel universe of pseudoscientific practitioners, research, publications, and meetings, arranged public protests and made accusations of corruption and conspiracy, used harassment and occasional death threats, and advocated legislative efforts to subvert evidence-based medicine and peer-reviewed science.
Politicians, the media, and the public have been left trying to discern the scientific facts from the pseudoscientific ones, with many regarding both as equally valid as they try to be fair and balanced.

When such inappropriate and uncritical weighting occurs, public and government officials unknowingly come to accept or even endorse highly unconventional and sometimes dangerous theories and therapies.

Many individuals who represent themselves as Lyme disease activists and LLMDs hold and promote views of a tick-borne infectious disease that is inconsistent with credible scientific evidence. Although relatively small in number, their effect should not be underestimated.

Their unorthodox perspectives and resulting practices have contributed to injury and even deaths of patients. Millions of dollars have been spent refuting their claims, and thousands of hours have been spent responding to false allegations, legal threats, congressional queries, and other harassments.

At a time when unnecessary healthcare expenditures are being scrutinised and widespread bacterial resistance has been linked to overuse of antibiotics, it is particularly important that unsubstantiated treatments be avoided.

This situation is not likely to end anytime soon. As with other antiscience groups, many Lyme disease activists are well funded and often connected to influential political and media sources.

Treatment of Lyme disease with long-term antibiotics is profitable for LLMDs and can be falsely reassuring to patients, who believe that they have a debilitating chronic infection and thus do not seek diagnosis and treatment for other disorders.

There is no deficiency of either new patients or activists. The medical anthropologist Sharon Kaufman wrote that “Information technology has transformed the way trust and knowledge are produced”. Most people now find medical information on the internet, and the websites of LLMDs and activists are often viewed as legitimate and reliable sources of information, which they may not be.

Such misplaced trust has also contributed to a similar situation in Europe, with increasing pressure being brought on authorities there to sanction the use of prolonged antibiotic treatment for patients without credible evidence of Lyme disease by groups such as the German Borreliosis Society and Dutch Lyme Association. This ill-founded advocacy is being extended to other, less common, tick-borne infections (and to non-Ixodes tick-transmitted pathogens such as Bartonella).

In conclusion, activists, through public appeal and political lobbying, have managed to divert attention away from existing evidence-based medicine in their quest to redefine Lyme disease. There is a serious concern that they will further endanger the public’s health unless responsible physicians, scientists, government leaders, and the media firmly stand up for an evidence-based approach to this infection that is based on high-quality scientific studies.


The Above, With Camp Other Commentary


"Aspects of Lyme disease advocacy are an important example of this antiscience movement. For the purposes of this Personal View, we will define this antiscience outlook to also include the promotion of pseudoscience and science that has weak credibility or validity because of fundamental flaws in its design or poor reproducibility."

The problem with a statement such as this is that the content is a mix of fact and opinion.

I have to admit, there are a heck of a lot of unproven alternative treatments for Lyme disease and its coinfections which are out there - salt and vitamin C, MMS, and Rife being some of the riskiest and most useless treatments being promoted.

I think the focus on such treatments has distracted others from investing more energy into petitions for and promotion of research on persistence, combination antibiotic treatments, immune dysregulation, and other topics which affect the outcome for patients with persisting symptoms.

And I think focus has to come back to the use of antibiotics and other antimicrobials in their effective treatment of Lyme disease and its coinfections, as such medicines have been studied for years for their effectiveness in treating such infections.

Not all patients, doctors, and researchers who are connected with Lyme disease advocacy are antiscience or avoid the facts, even when they do not align with what we wish they would be instead. Quite a number of us are in favor of more research and want independent research completed to help patients with persisting symptoms of post treatment chronic Lyme disease.

NIH research and private research on Lyme disease has been funded by Lyme disease advocacy groups. And some Lyme disease advocacy groups have even funded research to address the immune dysregulation component behind persisting symptoms, providing evidence that it is a misconception that all Lyme disease advocacy groups and patients are only interested in long-term antibiotic treatment alone.

I have heard mention by others that Lyme disease advocates and patients are any of a number of things -  anti-vaccination, conspiracy theorists, hypochondriacs, and gullible. Maybe some people are - and there are also such people in the general population.

But to characterize everyone - or even many people - with Lyme disease as having these qualities is ignoring the majority of us with Lyme disease who do not possess these qualities... It's like characterizing everyone or most people who are a microbiologist, pharmacologist, scientist, or family doctor as being a shill for Big Pharma. Neither characterization is either accurate, fair, or true.

If you only write about Lyme disease patients with certain qualities, then you have not managed to talk to us or acknowledge us all: Some of us have been quiet online and in public - we're very sick and just want to get better. Some of us are forward-thinking advocates who have always wanted more research. Some of us are inbetween. We aren't all the same.

If you have read my blog, you will know I have an issue with conspiracy theories. I don't even want to discuss them and demand credible evidence from anyone mentioning them. While I have not been particularly vocal on this issue before, I am in support of safe and effective vaccines - especially in the case of life threatening diseases.

 I am in many ways a skeptic and am hardly considered gullible, nor am I a hypochondriac.

If you think that those of us who are looking at and supporting "science that has weak credibility or validity because of fundamental flaws in its design or poor reproducibility", then it would be educational and informative if you would take these cases and studies point by point, and just lay it all out for those of us who want to hear your position on why the specific studies are flawed.

Instead, most of what the Lyme patient community hears in various media outlets and your own articles is the phrase "in our expert opinion, chronic Lyme disease is not a real clinical entity" without any specific explanation as to what reasoning and evidence supports that statement. (And then you go on to mention Post Lyme Disease Syndrome, and yet there is no solid clinical definition and are no biomarkers for this condition. I find this strange and inherently useless.)

Falling back on your position as expert is not cutting it for those who are ill with persisting symptoms - it's not enough when some of us have been ill for years and have lost a lot due to illness. Patients and advocacy groups need to know not just what your conclusions are, but how you reached them.

"For two decades, many Lyme disease activists have portrayed Lyme disease, a tick-borne infection, as an insidious, ubiquitous, difficult to diagnose, and often incurable disease, which causes mainly non-specific symptoms such as chronic fatigue, musculoskeletal pain, and neurocognitive dysfunction that can be treated only through the use of antibiotics for months or years."

I think the truth lies somewhere inbetween.

I don't think it's incurable, but I think standard treatment may be inadequate for some patients. I think Lyme disease is complex and the outcome is mixed for Lyme disease patients depending on a number of factors. Even the 2006 guidelines show up to 10% of early acute cases have treatment failures - so even if caught early, not everyone is better with early treatment.

Based on your own research, clinical microbiology texts, conference literature, medical school presentations, PubMed publications, and patents written by infectious disease experts, documentation states that Lyme disease can be easily misdiagnosed or mistaken for another medical condition. This is especially true in its early stages when serology is unreliable and a rash may not be visible or was missed due to its location. Because it's a multisystem disease, symptoms can be all over the map, and later stage untreated Lyme disease can be missed unless it's a clear case of Lyme arthritis.

I didn't learn this from other activists, though some of them have the same information on their own sites. I learned it from books, professional clinical journals, professional medical groups, and your own studies. I'm a stubborn sod and I do my own research, and question everything I read and hear. I occasionally even reread my own writing and question myself: "Do I still think this is true? And if not, why?" because I want to aim for getting as a clear an understanding of the issues as I can.  (I'm okay with being wrong, too, and correcting my position provided the evidence I'm given is convincing and there is no alternative hypothesis which has equally compelling evidence.)

Untreated Lyme disease leads to late stage sequelae that can be very serious and disabling.  You cite that patients mention "non-specific symptoms such as chronic fatigue, musculoskeletal pain, and neurocognitive dysfunction". Those symptoms can relate to conditions such as Lyme carditis (affecting the heart),  Lyme encephalopathy and neuroborreliosis, and arthritis (including chronic Lyme arthritis, which is hypothesized to be autoimmune in origin in patients with an HLA-DR4 allele).

Will everyone experience these symptoms who gets Lyme disease? No. Not everyone gets such serious symptoms. Do some people experience them? Yes. But then this is what we were always talking about, and why prevention is important. (Isn't this why, too, you have been working on various vaccines for Lyme disease over the years? Because the late stage sequelae are rough, and because no one wants their son to collapse from heart block caused by a tickborne infection?)

These non-specific symptoms could be considered clinical indicators of the presence of late stage Lyme disease - some are symptoms which arrive in early dissemination. Symptoms in and of themselves could be related to other conditions - but if the patient has a clinical history and symptoms pointing to Lyme disease, it needs to be considered in the differential diagnosis.

If the same symptoms arise in patients with Lyme disease who have been treated with a standard course of antibiotics, then a cause for those symptoms needs to be further investigated. At present - according to all the documentation I've read - the cause is unknown.

This means it is... unknown. Both the persisting infection model and autoimmune model are hypotheses. And there are variations on each of these models.

I don't understand why a third hypothesis isn't tested: that it is a combination of both infection and immune dysregulation that leads to persisting symptoms?
"As with other antiscience groups, some Lyme disease activists have created a parallel universe of pseudoscientific practitioners, research, publications, and meetings, arranged public protests and made accusations of corruption and conspiracy, used harassment and occasional death threats, and advocated legislative efforts to subvert evidence-based medicine and peer-reviewed science."
When patients have not been heard and their condition has not been adequately addressed - and when their condition has not been researched to the point where the cause is known and treatment path clear - patients are going to turn to whatever treatments are made available to them.

Some treatments will be evidence-based, some will be experimental and based on scientific hypothesis, and some of it will not have any evidence to base their treatment on at all and turn to anecdote.

What would anyone expect them to do? Nothing? 

One of the often cited pieces of advice given by you has been to see a doctor to rule out any other medical conditions. What if patients have already done so, some even having been to a few specialists - and have found no other cause for their symptoms but have evidence that suggests they have a tickborne illness?

They can choose to do nothing, treat their symptoms, or continue to look for another cause. I think right or wrong, most people are not going to sit there and do nothing.

Especially if they are bedridden. Especially if they have chronic pain and fatigue. Nobody wants to live like that. They want their old life back.

It's not that anyone wants to subvert evidence-based medicine or peer-reviewed science, per se. That's not it at all. The issue is that patients think that in this particular situation, your scientific research has failed to help them.

Some reasearchers are trying to conduct research which help patients find more effective treatment and an understanding of the disease process, but it is slow going.

The perspective of the average Lyme disease patient with persisting symptoms is probably not all that different from patients with chronic fatigue - or people with fibromyalgia not too long ago.

Patients have not only felt abandoned but judged and labeled. They have been told their pain is just "the aches and pains of daily living" when that has not been their experience - their lives have been limited if not entirely put on hold by their pain and fatigue. If symptoms were that mild, I think most of us would just shrug, pop some ibuprofen, and live with them. Go to work. Go to the gym. But for a significant number of us, they aren't mild. They're debilitating.

For just a moment, I want you to stop, look in the mirror and think: Why hasn't the Lyme disease patient community listened to me? Why are they angry?

I don't support the use of threats and do not like conspiracy theories. If there has been any corruption, I leave that to be handled by professional investigators and those who are aware of the corruption firsthand - I am not in a position to make that call and couldn't base my decision on hearsay, anyway.

All this aside, though: Patients are angry, and a letter like this does not make your position stronger. It's not a letter advocating for improved health and research to help patients. It's not a letter demonstrating the strength of the evidence supporting your own position. And it's not a letter about caring for and healing the sick.

On the surface, it's a letter condemning pseudoscience - which I find fault with, too. But on a deeper level, this is not what it is about. No. Patients are going to read it and see that it's a letter which condemns the organizations and doctors who have been there for them.  Not only been there for them - but have helped many of them get better.

While you can argue with some of the LLMDs' methodology, the truth of the matter is they have diagnosed cases of Lyme disease and other tickborne infections accurately and helped patients get better. Some of them have picked up the pieces after an urgent care or family doctor missed the diagnosis.

This is part of what I think you have trouble reconciling: That even as there are charlatans and bad doctors - even including a few bad LLMDs - there are good LLMDs out there who are correct in their diagnosis and their treatment is helping patients.

Whether or not you agree with what advocacy organizations and LLMDs do or not is besides the point here - hey, there are certain statements and practices I've heard LLMDs and organizations make which I disagree with, too. Anyway, this message here is really more about you, not them.

Here are your bullet points:

  • You have not adequately addressed the needs and concerns of patients either through your communications involving them or by conducting research which is important to them on a practical level.

  • Your 2006 guidelines seem to focus on discussion about people with persisting symptoms who do not have a previous history of Lyme disease rather than people who do, and lack citations for effective and beneficial ways to treat patients with persisting symptoms. The focus is almost entirely on what not to do.

  • Patients are not likely to want to listen to you if you are characterizing their pain as minimal when their pain is moderate to severe, and patients are not likely to listen to you when you are characterizing them and their situations when you don't even know their story. It's called diagnosing at a distance.

  • Given past history between patient organizations and your organizations, things are not looking good. Patients are not trusting you for various reasons, and part of it is already years of not being listened to and considered. At this point, you can change what you do to consider patients in the equation more - but honestly, I think third party work is the best place to go for everyone. 
"Politicians, the media, and the public have been left trying to discern the scientific facts from the pseudoscientific ones, with many regarding both as equally valid as they try to be fair and balanced."
Instead of making such a statement, can you provide evidence to back up what you consider to be scientific fact and what you consider to be pseudoscientific?

Maybe you should create a web site where you outline this information and let others read it and decide. So far, whatever arguments and evidence I've heard from your side that I've read is currently not that detailed or comprehensive in terms of presenting your view and is provided in terms of soundbites.

Right now you have an uphill battle. Whenever I google "Lyme disease" the percentage of web sites out there which are represented by your organization are outnumbered by a pretty wide margin by patients and advocacy groups.

And so far, very few web sites discuss the scientific evidence supporting either the persistence model or autoimmune hypotheses in a comprehensive and easily understood way - regardless of which side is presenting the information. Even fewer web sites get into the nitty gritty of why a particular aspect of a particular study has shortcomings (data lacking) or flaws (data analysis was faulty; method was incorrect).

Yes, there is research out there for both models - but it is distributed and piecemeal, some of the information is outdated and some of it is not easily accessible because it's behind a "pay for publication" wall.

I end up getting most of my Lyme disease information from Pubmed and textbooks - both of which I refer to pretty heavily on this site. I don't refer to either major advocacy organizations or your sites much because I am trying to look at the data directly and sidestep the controversy. I have to piece together this puzzle on my own.

The problem I'm seeing so far is that there isn't enough directed research that addresses the problems of someone with my condition, period.
"When such inappropriate and uncritical weighting occurs, public and government officials unknowingly come to accept or even endorse highly unconventional and sometimes dangerous theories and therapies."
Critical weighing of the evidence is necessary, and researchers, doctors, and patients need to all be involved in the process. Patients in particular, because they are the primary stakeholders in this situation.

In the end, it's about the PATIENTS.

Patients who need more research and have been waiting a long time to get it.

In the early days of Lyme disease, patients' voices were welcome at more scientific conferences just as they were at the October 2010 Institute of Medicine tickborne diseases workshop. Polly Murray was listened to before this, and the public health service took her reports seriously when she mentioned an outbreak of juvenile arthritis clusters in Connecticut back in the 1970's.

What happened?

Many individuals who represent themselves as Lyme disease activists and LLMDs hold and promote views of a tick-borne infectious disease that is inconsistent with credible scientific evidence. Although relatively small in number, their effect should not be underestimated.

I think I've already addressed the bulk of this statement.

Their unorthodox perspectives and resulting practices have contributed to injury and even deaths of patients. Millions of dollars have been spent refuting their claims, and thousands of hours have been spent responding to false allegations, legal threats, congressional queries, and other harassments.

How do you suggest patients improve their health and quality of life if they have persisting symptoms of post treatment Lyme disease?

Even conventional perspectives and practices in medicine have contributed to injury and death of patients - including denying antibiotics and antiprotozoals to patients who need them. Treating patients comes with risks, and not treating patients also comes with risks. What can you do to mitigate risks and improve the health of patients overall?

I'd like to see the hurling stop on both sides of the controversy. Hint: Not writing this letter and writing a different one about research that helps patients would have been one step towards stopping.

"At a time when unnecessary healthcare expenditures are being scrutinised and widespread bacterial resistance has been linked to overuse of antibiotics, it is particularly important that unsubstantiated treatments be avoided."
How do you know antibiotics are overused in individual patient cases? Perhaps in some situations additional antibiotics and antiprotozoal medications are necessary.

More research on the treatment of late stage Lyme disease and polymicrobial infection needs to be done, as well as the immune dysregulation factors leading to persisting symptoms.

More research on neuroborreliosis needs to be done. Dr. Fallon mentioned at the IOM workshop that there is a correlation between neuroborreliosis and the development of persisting symptoms. If you could prevent more cases of neuroborreliosis and treat existing ones effectively, then perhaps far fewer people will be trying longer courses of antibiotics. Many patients are concerned about Lyme disease because it can affect CNS and brain - if researchers address this issue effectively, more patients will be at ease.

If you tell me Dr. Fallon has misplaced concerns - or by extension I do - tell me why.

If you are absolutely sure that more antibiotics aren't going to help all patients in all situations where symptoms are persisting, and something else is going to help more - tell me why and tell me what helps. I am all ears.

To date, I have yet to hear a really convincing argument and be presented with evidence that supports this as being the case for everyone with persisting symptoms of post treatment chronic Lyme disease.
"This situation is not likely to end anytime soon. As with other antiscience groups, many Lyme disease activists are well funded and often connected to influential political and media sources."
And this letter is not addressing the issues which concern patients, once again.
"Treatment of Lyme disease with long-term antibiotics is profitable for LLMDs and can be falsely reassuring to patients, who believe that they have a debilitating chronic infection and thus do not seek diagnosis and treatment for other disorders."
Medicine is often profitable in general, and doctors of all kinds have been falsely reassuring to me and other patients.

Personally, I don't think my LLMD has been making money hand over fist off me. And this field is not a  uniform one - it is more profitable for some LLMDs than others for a variety of reasons. And some take insurance, some do not.

In the end they are all different, but most of them are doing the best they can to help people. And any statement you apply to an LLMD can be written to apply to other doctors and specialists for other situations and other forms of profit generation.

The questions I have as a patient are: Do they have any evidence to support their treatments for individual patients? Do they have solid case studies? Are people getting better? The proof is in the pudding.

And I'd also want LLMDs to avoid conflicts of interest as much as any researcher working on Lyme disease.

I'm not holding anyone up to different standards here. The problem is the way scientific and medical culture are now, how far do you have to go before you find some conflict of interest somewhere along the line with just about anyone?

This bit about not seeking out diagnosis and treatment for other disorders is an assumption, and it is incorrect.

I have sought diagnosis for treatment for other disorders. I have also had two specialists and one family doctor tell me to talk to my LLMD when they could not figure out why I kept getting fevers and other strange symptoms.

Make of that what you will - it reflects on them and the medical profession today. Either the doctors are stumped, or they trust the LLMD's judgment, or they just want me off their hands. I don't think the last item is entirely true, because when acute problems come up like a flu or an ingrown toenail, my family doctor is willing to treat it - I don't see an LLMD for every problem that comes up.

I suppose it's possible that I could have a chronic condition that has not been identified yet, but if so, I don't know who I would hold responsible for this because I have been thoroughly examined and tested.
"There is no deficiency of either new patients or activists. The medical anthropologist Sharon Kaufman wrote that “Information technology has transformed the way trust and knowledge are produced”. Most people now find medical information on the internet, and the websites of LLMDs and activists are often viewed as legitimate and reliable sources of information, which they may not be."
This is actually a hilarious statement to make.

Back in 1992, there were over 100 Lyme disease support groups and there were a sum total of 26 web sites on the internet. 

Most people outside of universities and the government didn't even have internet access yet.

Why did patients need that many support groups before 1992 and form them so readily without using the internet?

It's really simple: Because they already weren't getting the support or research they needed.

Yes, we have more access to information about Lyme disease online than ever. Think of how many cases may have been prevented by now because people spoke up about it, and it was the patients who did. Think about how many people are familiar about the symptoms and know what they are - and it was the patients who warned them.

Maybe not everything online is right, but there is a lot of information that is right that I can easily access now that I could not before - not without going to a university library and piling through books for hours. Some of us still do that because not everything can be found online.

The issue isn't the source but having a critical way of considering and weighing the information and being aware of the limits of one's own knowledge in a given area in order to consider the data presented.  There will always be a certain amount of information I won't immediately grasp - so that is why I talk to a professional such as a doctor, scientist, microbiologist, or other researcher I trust.

I turned to the internet, too, but because I am skeptical, I decided to look at what everyone had to say about Lyme disease. I still don't know the answers to some of my questions and I'm finding out that researchers aren't entirely sure, either. Where does that leave me then?

"Such misplaced trust has also contributed to a similar situation in Europe, with increasing pressure being brought on authorities there to sanction the use of prolonged antibiotic treatment for patients without credible evidence of Lyme disease by groups such as the German Borreliosis Society and Dutch Lyme Association. This ill-founded advocacy is being extended to other, less common, tick-borne infections (and to non-Ixodes tick-transmitted pathogens such as Bartonella)."
Why do you think this is happening? I suggest referring to my comments further upstream.
"In conclusion, activists, through public appeal and political lobbying, have managed to divert attention away from existing evidence-based medicine in their quest to redefine Lyme disease. There is a serious concern that they will further endanger the public’s health unless responsible physicians, scientists, government leaders, and the media firmly stand up for an evidence-based approach to this infection that is based on high-quality scientific studies."
It's funny to hear it from both sides. I don't even like that there are "sides" to this controversy. I just want to know the truth, and at the moment, I read the research directly and I see some of the points you make and agree - but I also disagree. And I see some of the points others make within the Lyme community and agree - but I also disagree.

This is why I want more research from independent parties who are not invested in the outcome financially or ideologically - but still care about patients and want to do right by them.

If you want to win the Lyme wars, change strategy.

What you're doing? It ain't workin'.

At this point, I just don't want to play.  I want to get better and go back to work and stop feeling like fatigue and pain is going to dog me forever. I have lost a good portion of my 30s to this illness - the most productive years of my career. How are you going to help me through my 40s? Or is disability it for me?

Addendum April 2012: A few rebuttal letters have been posted to Auwaerter et al's original letter published in The Lancet. See: http://campother.blogspot.com/2012/04/health-matters-magazine-and-lancet-anti.html


21 comments:

  1. Well said Camp if only 'they' would put as much effort into real research as 'they' do into denying a disease- 'they' acknowledge symptoms persist so what are 'they' going to do about that.
    My antibiotic responsive illness following a tick bite has resolved more or less completely. Great, but sad that it took 5 doctors and 3 rheumatologists 4 years to diagnose me and the best part of 4 years antibiotics to get my health back. I consider myself lucky to have found treatment that works, it is irrelevent to me that RPCT do not support the use of my treatment, it would be highly un ethical to do such a trial with the science available that shows this illness to be so capable of causing serious sequale. Although listening to some of the doctors who deny this disease perhaps we are all part of that World Wide RPCT what was it Ken Leigner described Tuskegee x10000.
    How lucky I was to be diagnosed clinically, treated by a open minded GP and also by a knowlegeable LLMD but I lost years of my life with a painfull disabling illness and my job and so my income. All could have been prevented if only there had been more awareness- the nymph tick bite and EM rash at the start of my illness could have been treated if only I had known and if only the doctor I saw had known.

    ReplyDelete
  2. Joanne,

    You said, "if only 'they' would put as much effort into real research as 'they' do into denying a disease- 'they' acknowledge symptoms persist so what are 'they' going to do about that."

    Yes, exactly! They put so much time and energy into letters and articles which dismiss the work LLMDs are doing to help patients when they could be spending their time providing evidence for their own position and finding treatments that help those of us with persisting symptoms.

    If their own evidence for persisting symptoms being an autoimmune disorder is so strong, then why isn't that specifically stated somewhere? Why isn't there a specific treatment recommended for it? Has a specific treatment even been tested for it in clinical trials? Has a specific treatment been tested against long-term antibiotics? No?

    If they wanted to win the Lyme wars, they could come up with their own treatment which makes patients better. A new antibiotic, a new anti-inflammatory drug, a new immune regulating drug - something based on their own hypothesis - and test it. Are they? If they are, I haven't gotten wind of it.

    Their scientific description of those with post treatment persisting symptoms gets more and more dilute with each pass:

    - They state chronic Lyme disease doesn't exist and there is no real definition for it - their definition in the NEJM and their own web site states people with chronic Lyme disease includes people with objective late stage symptoms as well as people who have never had Lyme disease and are ill with something else (WTF?).

    - They acknowledged that people with post treatment persisting symptoms who enrolled in the Klempner study were very ill with a condition they call Post Lyme Disease Syndrome.

    - And yet they cannot clinically and scientifically define Post Lyme Disease Syndrome, either, other than recently they have begun to state it's anyone who has persisting symptoms after having had a definite case of Lyme disease.

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  3. Joanne,

    You said, "How lucky I was to be diagnosed clinically, treated by a open minded GP and also by a knowlegeable LLMD but I lost years of my life with a painfull disabling illness and my job and so my income. All could have been prevented if only there had been more awareness- the nymph tick bite and EM rash at the start of my illness could have been treated if only I had known and if only the doctor I saw had known."

    I am so glad that you found someone who helped you and that you got your health back. It just angers me that your case as well as others didn't get diagnosed and treated earlier - it would have prevented so much suffering and loss.

    The thing I find especially concerning about statements IDSA Lyme panelists have made (and by extension, SOC and EUCALB) is that there is so much internal inconsistency about the nature of the disease in people with post treatment persisting symptoms. On one hand, people have a serious condition and are not to be dismissed; on the other hand, people do not have a chronic infection and are basically told not to do a whole pile of things (like take vitamins) that the average doctor might suggest their patient take when they are fatigued and not eating well. It amounts to being told you're sick and there's nothing that can be done about it.

    You said, "Although listening to some of the doctors who deny this disease perhaps we are all part of that World Wide RPCT what was it Ken Leigner described Tuskegee x10000."

    While I do not understand how those of us with persisting symptoms are treated with such inconsistency, Leigner's analogy of the mistreatment of Lyme disease patients to the Tuskegee experiment just fans the flames in the other direction. It makes Leigner sound like a conspiracy theorist. Statements like this have to be backed by evidence too, just as the IDSA panelists' statements and guidelines for late stage and post treatment chronic Lyme disease need to be backed by evidence.

    There are family doctors who have caught and treated cases of Lyme disease early and ERs which have caught other tickborne illnesses early on and treated them then, and the patient continues on without any further problems. So I don't have evidence that everyone in the medical profession is part of some mass experiment. I do, however, get the impression that not everyone is trained to recognize different EM rashes and consider Lyme disease and other tickborne illnesses in their differential diagnosis. Some people slip through the cracks.

    How to prevent this from happening is a good question. Early effective treatment can help avoid the issue of developing later problems and also avoid pushing the issue of private insurance companies picking up the tab for extensive antibiotic treatment. I don't see why anyone would argue against preventing bigger problems from both a medical and financial perspective, so missing an early diagnosis is the last thing you'd want to do.

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  4. I just want to add a few very astute comments about this from LNE:

    "doesn't the very existence of the dissent in Lymeland (admittedly wacky as it may be) suggest a major failure of the authors of that very article?"

    "[...] by encouraging or accentuating the 'personal' aspects of the issues (or, perhaps, more personal)...doesn't that detract from the basic, inherent value and validity of the scientific argument?"


    Yes. And Yes. I agree with you 100%.

    ReplyDelete
  5. Lorraine Johnson of CALDA weighs in on this letter:

    http://www.lymedisease.org/news/lymepolicywonk/799.html

    I've disagreed with some things Johnson has said in the past, but for the most part, agree with her statement.

    I think further negative remarks are not necessary. What we really needs to happen is for this mudslinging to end on both sides and to focus on the science. Now here's the question: Who do we ask to conduct further research to help patients with persisting systems who is not involved with this mess?

    ReplyDelete
  6. Camp I take your point about Leigner's remark but in the context of the letter he wrote I do not think it a conspiracy theory- he has sufficient experience with the denialists and the patients for me to respect his views.
    http://www.ilads.org/news/lyme_press_releases/iompanel_lyme.html

    ReplyDelete
  7. I spent an hour tonight and found lots of links to research from the Lyme cabal from the Antiscience article where they talk about Chronic Lyme, Seronegativity, Persistent infection etc I was not able to post as a comment probably too long but it was an amusing game well it would have been were it not so tragic.
    The Case For Chronic Infection: Evidential persistence of Borrelia
    species post antibiotic exposure in vivo and in vitro.

    Michael D. Parent
    https://acrobat.com/#d=sbb-EmpQrQTgrPoezLGreg

    an excellent read

    ReplyDelete
  8. Joanne:

    Thank you for the link to Liegner's entire response - his remark makes much more sense now that I've read it within context of the entire letter. He isn't just making a flippant remark out of anger, it seems... He is being deadpan about it.

    Those are very serious charges that he is making about the IDSA. He would have to submit evidence to the courts comparable to what was submitted for the Tuskegee experiment - or someone else like Kennedy would have to conduct hearings. He's not just condemning the IDSA guidelines panel's actions - he is extending his criticism and charges towards more IDSA members, and is viewing the USPHS as setting a historical precedent for poor treatment of patients.

    One thing which is interesting to me about this letter is the citations he provides at the end of it:

    Liegner KB, Rosenkilde CE, Campbell GL, Quan TJ, Dennis DT. Culture-confirmed treatment failure of cefotaxime and minocycline in a case of Lyme meningoencephalomyelitis in the United States [abstract].
    Programs and abstracts of the Fifth International Conference on Lyme Borreliosis, Arlington, VA, May 30-June 2, 1992. Bethesda,MD: Federation of American Societies for Experimental Biology; 1992: A11.

    Liegner KB, Duray P, Agricola M, Rosenkilde C, Yannuzzi L, Ziska M, Tilton R, Hulinska D, Hubbard J, Fallon B. Lyme Disease and the Clinical Spectrum of Antibiotic-Responsive Chronic Meningoencephalomyelitides. J Spirochetal and Tick-borne Dis 1997;4:61-73

    Liegner KB. Lyme Disease: The Sensible Pursuit of Answers. (Guest Commentary). J Clin Microbiol 1993;31:1961-1963

    Liegner KB & Jones CR. Fatal progressive encephalitis following an untreated deer tick attachment in a 7 year-old Fairfield County, Connecticut child. [Abstract] VIII International Conference on Lyme Disease and other Emerging Tick-borne Diseases, Munich, Germany, June 1999

    Liegner KB, Shapiro JR, Ramsay D, Halperin AJ, Hogrefe W, Kong L. Recurrent Erythema Migrans Despite Extended Antibiotic Treatment with Minocycline in a Patient with Persisting B. burgdorferi Infection. J Amer Acad Derm 1993;28:312-4.

    Aren't a number of the above co-investigators also members of the IDSA? Weren't some involved with guidelines development?

    ReplyDelete
  9. Joanne,

    I've read Parent's list of chronic Lyme disease abstract citations in the past. I've also read his analyses on LN and other fora, and think he misunderstands some of the science. I've discussed this with others who have biology backgrounds and degrees (people who are open-minded about the nature of Lyme disease) and they poked holes through his analysis, too. I haven't cited Parent's work and have chosen to cite other sources.

    A number of those abstracts he lists and more are available through viewing all the documents from this page:

    http://www.lymeinfo.net/lymefiles.html

    This document may be of interest to those who are interested in persistence:

    http://www.lymeinfo.net/medical/LDPersist.pdf

    I'm still working through this list myself.

    I don't want to compile my own list unless I have the backing and collaboration of those with a scientific background in biology, microbiology, molecular biology, and so on - and at that point, it's more their list than mine. They get full credit, but I'd post.

    One note I recall reading on a support group when his list first came out is that some patient mentioned they planned to submit his list to their insurance company to get support for treatment. I don't think that would have worked and still wonder if anyone tried it and it worked because Parent doesn't have credentials that insurance companies would need to see.

    ReplyDelete
  10. I just want to add a general comment that I appreciate the hard work that anyone puts into compiling research that backs their position and provides evidence for it. It's important to collect data and review it and develop a greater understanding for tickborne diseases, and knowing and understanding more as patients and supporters means when someone writes a news article with errors in it or someone else misstates their position - patients and supporters can point to the data backing their claims.

    At the same time, it is provides for a stronger argument if someone with the knowledge base and experience in the scientific world - someone with credentials - is a supporter and can argue the case more eloquently than I and many others can.

    I'm doing what I can to understand the Lyme disease situation because I am personally invested in it against my choice, like many people. And I have some experience in the sciences - but I can't lay claim to having the level of experience of others I know.

    I think it's important to have more people with scientific knowledge and experience present the evidence and argue the finer points about topics such as immunology, molecular biology, and genetics because it takes an enormous amount of time to achieve mastery of these subjects to know where one leaves the arena of fact and begins to enter the realm of conjecture. It's these skilled professionals I want to make a list, and to have my back in an argument.

    ReplyDelete
  11. I was feeling so disheartened and frankly angry after reading the article that I knew I had to step away before I could respond in a somewhat rational manner.

    Instead of discussing the differences in opinion based on the available science, the authors seem to be doing their best to discredit thousands (if not hundreds of thousands) of people who they portray in a very unflattering manner. Attempting to tarnish the reputation of thousands of people based on the threats and actions of only a few is a form of prejudice that is almost shocking for me to read in this day and age.

    The "ethical concern" I have is with medical professionals who think it's perfectly acceptable to lash out at a group of people who are ill by doing their best to discredit them en masse. It seems to me the authors are blaming advocacy groups instead of facing their own frustration at not being able to come up with constructive suggestions for improving the lives of people who continue to suffer for reasons that healthcare providers and researchers clearly do not yet fully understand.

    Even if all the reasons are not yet understood, there is no doubt in my mind that many people with Lyme disease have not responded to a short course of antibiotics. Many have suffered the loss of their jobs, as well as the support of families and friends. Articles like this are no doubt intended to take away any dignity Lyme disease patients and their advocates may have left, but those efforts are bound backfire when people start to examine the motives behind writing it.

    I think it is nothing less than shameful for any group of professionals to publicly demean people who look to them for answers and relief of their suffering. What the authors hoped to gain from publishing this article -- aside from fanning the flame of controversy -- is anyone's guess.

    Time will tell, but I do believe this article is a late-ditch effort to garner support for the authors and like-minded individuals who are doing their best to defend an outdated definition of an illness that continues to surprise and challenge researchers because it is far more complex than originally thought.

    "The best defence is a good offence" may be the strategy being employed by the authors of the article. I believe the best strategy for Lyme disease patients and advocates is to continue supporting those researchers who are interested in finding real answers as opposed to those who seem to be dragging their feet by essentially repeating themselves. Exactly how we do this isn't yet clear to me other than acknowledging the hard work by some dedicated researchers and healthcare providers who do their utmost to help their patients.

    Thank goodness we have the support of others in similar situations -- making it all the more difficult for some healthcare professionals to simply sweep unanswered questions under the rug instead of attempting to address them.

    Toronto is under a tornado watch and it's starting to look and sound like a very big storm is now upon us. Gotta go.

    p.s. I believe Lyme disease advocates are the opposite of antiscience. We are depending on science to come up with the answers that will eventually translate into real help for those who continue to suffer.

    ReplyDelete
  12. Rita,

    "Instead of discussing the differences in opinion based on the available science, the authors seem to be doing their best to discredit thousands (if not hundreds of thousands) of people who they portray in a very unflattering manner. Attempting to tarnish the reputation of thousands of people based on the threats and actions of only a few is a form of prejudice that is almost shocking for me to read in this day and age. "

    I have a huge problem with this as well. It took a while for me to write about this letter. It seems strange for such a letter to be printed in a publication such as the Lancet - the content and tone is something I wouldn't think suitable for it.

    In a way, it's Trine Tsouderos all over again but on a larger scale, isn't it?

    While there is some truth to what the authors of the letter say, it doesn't apply to everyone involved with the Lyme disease patient community and mischaracterizes us as a whole...There are a whole lot of people involved with Lyme disease who in no way, shape, or form can be described by this rant.

    I don't think anyone can deny there are a few doctors out there who have treated patients for Lyme disease using questionable treatments and put them at risk and harmed them. I don't think anyone can deny there are a few conspiracy theorists out there and people who have issued threats to researchers. But the vast majority of the practicing LLMDs are not using such unusual treatments and are using antibiotics along with standard medication for pain and maybe a little bit of alternative medicine like artemisia for Babesia (which is promoted for the treatment of malaria by the World Health Organization and can work for Babesia) and a few other herbs and vitamins. And the vast majority of patients just want to get better and don't want to threaten anyone or cause trouble - they write letters, they petition for laws to get changed, and they want more research. All out of the desire to recover their health.

    (more)

    ReplyDelete
  13. (For Rita - more)


    "The "ethical concern" I have is with medical professionals who think it's perfectly acceptable to lash out at a group of people who are ill by doing their best to discredit them en masse. It seems to me the authors are blaming advocacy groups instead of facing their own frustration at not being able to come up with constructive suggestions for improving the lives of people who continue to suffer for reasons that healthcare providers and researchers clearly do not yet fully understand."

    It's not. Lashing out at people who are sick with a poorly understood condition is not only unprofessional, it is cruel. And they may think they are doing patients a favor by exposing what they see as pseudoscience and pointing out how specific doctors have done egregious acts. It's not going to help their side, though. It's only going to make most people angry.

    It would only help if they presented something better: more effective treatment, clearer and stronger evidence supporting their position, and more compassion for patients. They're lacking in all three, and they've made the doctors, advocacy organizations, and politicians who support us Parties Of Interest without really paying attention to us or the science.

    If they had all three and carried a Lyme green banner that said, "Come to the dark side, we have cookies and a cure", that would be tempting. But no. No cookies. No cure. Fail.

    They don't. And they are out of touch with reality, especially the reality of those of us who are patients. Those of us grappling this medical many-headed hydra. They have loss touch with the human side of suffering, as I do not hear them address patients in a hopeful way or apologetic way.

    Their response is not "We don't know what's causing it , we don't understand it, but here's the research we are currently doing to help you. Please sign up for one of our clinical trials." No. Instead, it's been years of "These doctors are wrong, your disease is not a chronic infection but we're not 100% it's an autoimmune condition either but we think maybe it is and unlike other autoimmune conditions we have no medication for it, sorry".

    For over two decades patients have not been getting the research they need for this condition. Yes, we've had small clinical trials, but they haven't helped. And for over two decades, LLMDs have been treating us and quite a number of us get better. Not everyone, but a significant number. Does anyone have hard numbers for how many of us have gotten better? Surely someone knows. It must be clear in patient files.

    I know people get better because I've talked to them and met them, some have even shared their test results with me. And I've seen people go from being really messed up and having trouble leaving the house to being able work full-time AND have a social life after work. I know it happens. Everyone knows Pam Weintraub's story, but there are so many others who improve and recover.

    Maybe someone should begin asking what LLMDs are doing and have them design clinical trials and see what happens.

    LLMDs and patients are there for each other. We help one another and learn from each other. Right now we need more advocates who are science savvy and can help, too.

    (more)

    ReplyDelete
  14. I am happy that you have this blog. Unfortunately I have trouble with complex information (due to Lyme, five other known infections, and/or autoimmunity) and it's extremely hard for me to process the medical texts. I don't understand most of it. Still it's nice to have something going on over the "Plum Island! vs You're All Insane!" racket. Thank you.

    ReplyDelete
  15. Anonymous:

    Thank you for stopping by. I'm sorry to hear you have Lyme disease plus other infections and maybe autoimmunity - that is a lot to deal with. I hope you have found a good doctor to help you and have support from those close to you.

    Sorry to hear you're having a hard time reading the medical texts. Can you suggest something I can do that would help you be able to read them?

    Is it a matter of the formatting of the text, the length of my posts, or is it the terms I use? Let me know.

    This blog is partially a record of my own research I open a window on for others to look in on and partially for others to make suggestions and discuss what's in the posts together.

    Thank you for the compliment. No, no Plum Island here. I will leave it firmly on the other side of Long Island where it belongs.

    ReplyDelete
  16. (Rita - more)

    "Even if all the reasons are not yet understood, there is no doubt in my mind that many people with Lyme disease have not responded to a short course of antibiotics. Many have suffered the loss of their jobs, as well as the support of families and friends. Articles like this are no doubt intended to take away any dignity Lyme disease patients and their advocates may have left, but those efforts are bound backfire when people start to examine the motives behind writing it."

    I really don't think they've done enough research into late stage Lyme disease, let alone post treatment chronic Lyme disease. The results from studies cited in the guidelines make me question why they would include such studies given the percentage of patients who do not return to baseline. Setting aside the chronic Lyme issue, the outcomes of late stage Lyme treatment in these studies is something that needs more discussion and awareness. What happened with these studies, and how are the patients involved faring today? I am always wondering.

    This missive adds insult to injury for so many people who have suffered so much. I can't even begin to tell you how much I have suffered or how much I have lost. It's been brutal. And even if everything were to instantly be back to normal in terms of my health right at this moment - even if I were totally better - I would be dealing with the past several years of fallout of debt, not being able to work, and relationships and plans which changed. Because of this illness, my life has been irrevocably altered, and for some plans that were cancelled due to my condition, there are no second chances.

    Writing this letter does nothing to discuss the scientific arguments that affect patients nor does it fix anything. I think other professionals in the field will read it and find it inappropriate for the Lancet and some will disagree with at least some portion of the content.

    (more)

    ReplyDelete
  17. (Rita - more)

    "I think it is nothing less than shameful for any group of professionals to publicly demean people who look to them for answers and relief of their suffering. What the authors hoped to gain from publishing this article -- aside from fanning the flame of controversy -- is anyone's guess."

    Not sure. Maybe it's an attempt to get more attention on the issue from other medical professionals. It could be in preparation for the STAAR Act they've been trying to push through Congress - it legislates controlling and limiting antibiotic use much more stringently. I have mentioned it on this site in the past, but few Lyme disease patients seem to be discussing it.

    There are aspects of this Act I support because I want to see fewer cases of MRSA and other serious infections and want to eliminate the overuse of antibiotics in places like animal feed lots. But the Act could be used to try to deny Lyme disease patients additional courses of antibiotics - something I find concerning.

    "Time will tell, but I do believe this article is a late-ditch effort to garner support for the authors and like-minded individuals who are doing their best to defend an outdated definition of an illness that continues to surprise and challenge researchers because it is far more complex than originally thought."

    Yes, but why are they trying to look for support now? This is interesting. They could have published a letter like this ages ago. Why now?

    I think there must be a reason for this timing.

    ""The best defence is a good offence" may be the strategy being employed by the authors of the article. I believe the best strategy for Lyme disease patients and advocates is to continue supporting those researchers who are interested in finding real answers as opposed to those who seem to be dragging their feet by essentially repeating themselves. Exactly how we do this isn't yet clear to me other than acknowledging the hard work by some dedicated researchers and healthcare providers who do their utmost to help their patients."

    I think writing a thank you note to the hard working researchers is definitely in order. And maybe asking them if they could share anything about what research they are doing now that could help patients and how. They may be limited in what they can disclose due to patent issues or general NDAs, but they may be able to say something informative.

    The issue with researchers is that unless you know the people who know them, it's going to be a little harder to know who your allies are and at the very least those who are not wedded to any particular model for what causes persisting symptoms. In some ways, I'd actually want a number of curious, imaginative, and highly intelligent researchers on my side who do not have any opinion one way or the other about persistent infection or autoimmune hypotheses and examine all the data and start anew. They may discover something different and new because they won't be going there entertaining a particular bias.

    "Toronto is under a tornado watch and it's starting to look and sound like a very big storm is now upon us. Gotta go."

    I hope you're okay and didn't get cackled at and get a new pair of shiny red shoes... Well, unless the tornado never came that is and you went shoe shopping.

    "p.s. I believe Lyme disease advocates are the opposite of antiscience. We are depending on science to come up with the answers that will eventually translate into real help for those who continue to suffer."

    I think some advocates are and some aren't, but I think science will have to come up with the answers either way. I think it's far more likely it will than many other things; I am not betting on a miracle but will accept one gratefully if it happens.

    ReplyDelete
  18. CO,

    We had quite the thunderstorm last night but nothing more dramatic than that. A tornado that did quite a bit of damage in the town of Goderich, ON on Sunday had everyone in southern Ontario on high alert because it came with only 15 minutes warning. This time people had hours to prepare and there may have been a few tornadoes not far from Toronto, but that still had to be confirmed the last I heard. No shopping or new shoes for me, unfortunately.

    I support those who are trying to reduce the routine use of antibiotics in livestock and only buy meat and poultry where animals are provided with diets that don't include antibiotics or hormones. Antibiotic resistance is likely at least partly attributable to the routine (and often unjustified) use in animals, as well as poor infection control practices in healthcare settings. Lyme disease patients are an unjustified scapegoat as far as I'm concerned.

    When I refer to Lyme disease advocates, I should clarify that I mean those who support -- and sometimes even subsidize -- scientific studies. I sometimes ignore the fact there are "pseudo" advocates who promote questionable treatments that appear to have no scientific basis whatsoever.

    You've mentioned the curious, imaginative and highly intelligent researchers in the past. The real challenge is finding and funding these individuals. Identifying which researchers are more open-minded can be difficult from the vantage point of a Lyme disease patient.

    I forgot to mention my reaction to this comment by the authors of the letter (not article as I kept referring to it in my previous comment):

    This ill-founded advocacy is being extended to other, less common, tick-borne infections (and to non-Ixodes tick-transmitted pathogens such as Bartonella).

    However "ill-founded" some ideas may be, Lyme disease patients don't usually just make them up for the fun of it. The possible Bartonella co-infection theory is probably based at least in part on this:

    http://www.ncbi.nlm.nih.gov/pubmed/12804168

    Vector Borne Zoonotic Dis. 2002 Winter;2(4):265-73.

    Epidemiology and impact of coinfections acquired from Ixodes ticks.

    Belongia EA.

    Epidemiology Research Center, Marshfield Clinic Research Foundation, Marshfield, Wisconsin 54449, USA.

    "Among patients with a confirmed tick-borne infection, coinfection rates as high as 39% have been reported. The most commonly recognized coinfection in most of the eastern United States is Lyme borreliosis (LB) and babesiosis, accounting for approximately 80% of coinfections".

    "Coinfections can modify the immune response and alter the severity of arthritis in animal models. Future coinfection research should focus on long-term clinical outcomes, the role of genetic variants, immunologic effects, and the potential role of Bartonella species as tick-borne pathogens".


    Why Lyme disease patients are called to task for at least considering ideas raised by researchers remains a mystery to me.

    ReplyDelete
  19. Rita,

    Glad to hear you weathered the storm okay.

    I totally agree with your position on antibiotic usage and wish Lyme disease patients weren't made to be scapegoats, too. It's way past tiresome at this point.

    "When I refer to Lyme disease advocates, I should clarify that I mean those who support -- and sometimes even subsidize -- scientific studies. I sometimes ignore the fact there are "pseudo" advocates who promote questionable treatments that appear to have no scientific basis whatsoever."

    There are advocates and then there are advocates, though. Some people are clearly advocates as they work for non-profit organizations and represent the needs of Lyme disease patients legally, ethically, and educationally. There are some individuals not affiliated with any organizations who spread awareness and do educational outreach of their own and could be called advocates. There are people who set up their own web sites to teach people about how to prevent Lyme disease and what the symptoms are. In way, each and every Lyme disease patient is an advocate - and how can we not be, given what we've experienced and want to prevent others from experiencing?

    There are pseudo-advocates among us. There are people who have never even had Lyme disease who try to sell treatments, books, pills, and other items to patients and prey on us. They may not be on all the support groups, but they are on the internet and looking for people desperate to try anything. These people are pseudo-advocates of the worst kind, because they can be false in their compassion in order to take your money.

    There are people who pose as patients on occasion and they're not. They're on groups for fraudulent purposes - either to be trolls, collect data for their school paper, promote products by the use of soft sales, and maybe even people from the medical profession. I don't know - all I know is some of my interactions with people on occasion have been strangely forced when the other person keeps seeming to want to change the topic we're discussing to a smaller set of things including the product which has helped them the most. They sound like a commercial. A friendly and welcoming commercial - but a commercial nonetheless.

    But every disease has these people. Cancer does. Chronic fatigue syndrome does. IBS. There's a whole pile of them out there, trying to take advantage of people. This letter can be about a problem which affects people outside of Lyme disease, too. It's not particularly special to our condition, and I think we're being unfairly singled out.

    "You've mentioned the curious, imaginative and highly intelligent researchers in the past. The real challenge is finding and funding these individuals. Identifying which researchers are more open-minded can be difficult from the vantage point of a Lyme disease patient."

    One thing you can do is ask the researchers for referrals? Ask ones who are already working on the issues and have done respectable work who they think is open-minded as to the cause for persisting symptoms and are or have done research on both Borrelia infection and immune issues.
    The best people to ask are those who are already doing this work.

    (more)

    ReplyDelete
  20. (Rita - more)

    For a long time, the statement about whether or not ticks can transmit Bartonella has been a conditional statement. However, the evidence is strong.

    This web page on Bartonella from Columbia University is pretty good:
    http://www.columbia-lyme.org/patients/tbd_bartonella.html

    Even though there is no direct evidence in this page - there is evidence that patients have been found who are simultaneously infected with B. burgorferi and Bartonella. This raises the possibility of both being transmitted by a tick bite - rather than being infected by a tick and a flea or cat scratch independently.

    But even the information on that page does not have the most recent research regarding Bartonella and ticks.

    Unfortunately, one thing some people in the Lyme disease patient community sometimes do is leap to conclusions too readily. I see it happen most often with a handful of conspiracy theorists who turn some idea that could be partially true into something that might be entirely true and by the end of the day it IS true. That's a problem.

    I'm not saying this is exactly what happened with Bartonella and ticks, because the topic isn't conspiracy theory territory - but I think it's something to be aware of when reading something that gets passed around: Always be aware of and look for the source.

    On the flipside, I get tired of hearing "No, that isn't true" from IDSA panel members when research that is out there points to the possibility of something being true and there is strong evidence to support it.

    Why can't they say, "We don't know for sure, there is evidence that points in that direction and we're researching the issue"? If they're concerned about patients, why can't they say, "We don't know for sure, but if you have symptoms of Bartonella - especially if you have been scratched by a cat recently or might have been bitten by fleas - see a doctor and get it checked out"? These answers would demonstrate compassion and care for patients as well as indicate what is currently unknown and needs further research.

    It's almost as if saying one doesn't know is a sin. I don't see the problem with not knowing something and admitting you don't know. Science is about not knowing and is a process of collecting and investigating the evidence and developing hypotheses and theories.

    ReplyDelete
  21. Rita,

    Regarding Bartonella in ticks, I really have to wonder why this letter completely ignores this study in particular:

    Source:
    http://cid.oxfordjournals.org/content/50/4/549.full


    Scalp Eschar and Neck Lymphadenopathy Caused by Bartonella henselae after Tick Bite

    Emmanouil Angelakis1, Céline Pulcini2, Julie Waton3, Patrick Imbert4, Cristina Socolovschi1, Sophie Edouard1, Pierre Dellamonica2, and Didier Raoult1
    + Author Affiliations

    1Unité de Recherche de Maladies Infectieuses Transmissibles et Emergents UMR 6236, Centre National de Références Scientifques-Institut de Recherche pour le Développement, Faculté de Médecine et de Pharmacie, Marseille
    2Service d'Infectiologie Centre Hospitalier de l'Université (CHU) de Nice, Hôpital l'Archet, Nice
    3Service Dermatologie, Hôpital Fournier–CHU Nancy, Nancy
    4Service des Maladies Infectieuses et Tropicales, Hôpital Instruction Armée Bégin, Paris, France
    Reprints or correspondence: Dr Didier Raoult (Didier.raoult@gmail.com).

    Abstract

    Rickettsia slovaca and Rickettsia raoultii have been associated with a syndrome characterized by scalp eschar and neck lymphadenopathy following tick bites. However, in many cases, the causative agent remains undetermined. We report 3 cases of this syndrome caused by Bartonella henselae, and we propose the term “SENLAT” to collectively describe this clinical entity.

    Ho hum.

    ReplyDelete

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