3 "Time For Lyme" Becomes "Lyme Research Alliance"

Just recently, the Lyme disease advocacy group, Time For Lyme - which is credited with creating a partnership with Columbia University Medical Center and the national Lyme Disease Association to establish and endow a Lyme and Tick-borne Disease Research Center in New York City at Columbia - changed its name to the "Lyme Research Alliance".

The name change came about as an effort to reflect the organization's growing emphasis on supporting more research into chronic Lyme disease and how to improve serological testing and treatment.

See this page to view a list of their currently funded research projects:

http://www.lymeresearchalliance.org/research_projects.html

Camp Other blog has written about a few Lyme Research Alliance funded projects such as:

Dr. Karen Newell Rogers' proposed chronic Lyme disease
treatment, VGV-L:
Viral Genetics' VGV-L Candidate For Treating Chronic Lyme Disease
Notes Posted On VGV-L 

Dr. Armin Alaedini's research on antibody response in chronic Lyme disease/PLDS patients:
Antibodies linked to long-term Lyme symptoms 

Dr. Steven Schutzer's research on biomarkers for late stage Lyme disease/PLDS:
Spinal Fluid Proteins Distinguish Lyme Disease From Chronic Fatigue Syndrome

I've checked out the Lyme Disease Alliance's new web site, and I approve of their overall mission and think it was fantastic they gave $3 million to fund the Columbia Lyme and Tick-borne Disease Research Center.

One thing I'm hoping to see with the change in name and greater commitment to research is a shift in the kind of accomplishments they had in the past, where videos, education packets, and legislation has been a focus - to a focus in assessing what kind of research projects would settle the Lyme disease controversy as well as focus on backing research on more novel treatment methods, such as they have done with VGV-L.

It is my dream that someday all the different Lyme disease organizations will unite for a single effort and come up with one large scale, fully funded Lyme disease research project that will help thousands of patients. I'd like to see focus on that project alone for a solid two or three years and see how far we can get in our understanding of Lyme disease.

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6 Health Matters Magazine And Lancet Anti-Science Lyme Disease Rebuttals

I wanted to point out two noteworthy online venues which are discussing Lyme disease as well as chronic Lyme disease - one article and a series of rebuttal letters which have been circulating around the Lyme disease patient community recently.

The first venue is Health Matters, an online magazine in the UK which is edited by Steve Iliffe, a professor at the University College of London, and Paul Walker,  an independent health consultant who worked for the NHS for many years.

This month, Health Matters published part one of an article by Kate Bloor on Lyme disease, "Falling Through The Gap?: Part One: Lyme Disease Prevention In The UK."

The article does not focus on the controversy around chronic Lyme disease but instead goes straight to the roots of Lyme disease by asking about which agencies and institutions in the UK are responsible for educating the public on prevention of tickborne illnesses and how well this job has been done to date.

Quoting Kate:

"Approaches that only target those in traditional high risk groups, may not reach far enough. New research shows that one in five people diagnosed with Lyme became infected either in an allotment, park or garden and one in five patients was infected abroad. These are not normally considered high risk areas or high risk activities."

Any program for prevention should be designed to reach all those groups who are found to be at risk and not some fraction of them, and should include prevention where substantial minority groups are at risk.

Kate also included this useful bit of statistical information:

"A survey of GP’s showed that 72% reported using the wrong method of tick removal, of the surveyed councils, only 7% provided information to staff, and only 7% claimed to have information for the public on their website."

From the research I've read from Russia, one of the major causes of infection from tick bites stems from improper removal of the tick. Every effort should be made to carefully remove the entire tick including the head and mandibles, without placing pressure on the tick's abdomen/gut. This will lessen the odds of contracting an infection greatly. Here, citing that 72% of doctors removed ticks incorrectly is very concerning; doctors are the front line for treatment and should be removing ticks properly nearly 100% of the time.

That regional councils would not have their own staff education and education for the public in place is also important to note, and I have to wonder how much those who have been bitten by ticks in these areas have informed the councils on their experience and requested more warnings to the public on tickborne illnesses. To me, it seems like it would require a small amount of effort and money invested in education to help prevent more people from being bitten.

The rest of the article outlines how prevention is being managed (or not) by various organizations, the educational strides being made by patient advocacy organizations such as Borreliosis and Associated Diseases Awareness UK (BADA-UK), and the need for national and local government health agencies to make tickborne illness a priority.

More here, at the link: http://www.healthmatters.org.uk/?p=1203

The second venue I want to mention is The Lancet, which has recently published a series of rebuttal letters in response to an opinion piece posted last year, "Antiscience and ethical concerns associated with advocacy of Lyme disease" (abstract only).

• Stella Huyshe-Shires, chairperson of Lyme Disease Action, writes about how the situation Auwaerter and his coauthors outline in the US is different from that which is experienced in the UK in regards to Lyme disease prevention, education, and treatment. She focuses on patient advocacy group's drive for awareness and evidence-based medicine to treat patients, and she mentions that the British Infection Association is now collaborating with LDA (UK) and a Department of Health funded body, the James Lind Alliance, on documentation of the uncertainties in treatment and diagnosis of Lyme disease.
  
  
• Christian Perronne, of the Infectious Diseases Department of the University of Versailles-St Quentin, France, points out the high variability and sensitivity of serological tests for Lyme disease, how tests do not account for strain varieties, and that other microbial infections may mimic that of Lyme disease. He points out that syndromes of an unknown cause should no longer be referred to as being chronic Lyme disease, and should be investigated for other microbial and non-microbial causes using an open-minded scientific approach.

• Carl Tuttle, of Hudson, New Hampshire, USA, wrote about how his experience of Lyme disease did not seem to match that of Auwaerter's experience, given how many people he knows have suffered serious symptoms with Lyme disease that was not diagnosed early - whereas Auwaerter indicated Lyme disease is easily diagnosed and treated. He mentions the inadequacy of serological testing and how it can lead to late stage cases which went undiagnosed and untreated, and how legislation has been passed in several states which protect doctors who treat Lyme disease patients with long-term antibiotics. He asks if the IDSA is correct in its position, then why is there so much legislation being passed which protects doctors who offer long-term antibiotic treatment?
  
  
• And lastly, Auwaerter et al offers a response to these rebuttals here:
  http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(12)70056-7/fulltext.
  
  Auwaerter et al state that a huge percentage of patients are being improperly diagnosed with chronic Lyme disease by alternative practitioners when these patients have another condition. They point out that serological testing is reliable, and evidence that testing is unreliable would be needed by Mr. Perronne and Mr. Tuttle in order to support their position. Auwaerter et al point out that the current guidelines stand based on independent scientific review and that "Vague symptoms such as chronic pain, fatigue, and neurocognitive complaints are poorly understood by modern medicine but are the focus of this debate." (Ed: The last full paragraph of this response is as long as the previous two put together and is comprised of nothing but a list of stated possible conflicts of interest.)

Comments:

While I agree with a lot of what Ms. Huyshe-Shires had to say, I would like to step away from the argument that "Lyme disease in ______ is different because it's different here".

I've heard this before, and this argument has been made to try to distance European patients from those in the US, with an underlying belief that since European strains are different, that diagnosis and treatment should be determined using European scientists and research - not that of American based IDSA. Fine, but then I will argue that since Europeans also contract Borrelia burgdorferi that they should come up with diagnostic and treatment methods for the US as well!

Scientific research to date has shown that Borreliosis is Borreliosis, whether it is caused by Borrelia burgdorferi, Borrelia afzelii, Borrelia garinii, and a number of other strains. The symptoms produced by these organisms may differ somewhat from one locale to the next, but many have the potential to cause neuroborreliosis, and indeed, even those with a most conservative view of the Lyme disease controversy have stated that there has been too much emphasis on Europe having more neuroborreliosis and different symptoms when the situation is that clinical presentations in the US have been very similar to those in the UK. 

Receiving an early diagnosis and treatment matters regardless of where one is in the world and which strain they have.

I can relate to Mr. Perronne's position, to some degree. I don't think this is a heterogeneous condition - nor was it from the start even if just basing it on those who have had tick bites - since a number of ticks are coinfected with pathogens other than Borrelia burgdorferi/afzelii/garinii. I think it's possible some patients have a different infection which they contracted through a tick bite or perhaps even a tick bite made them more susceptible to a new, undefined infection. More research is needed to determine why this group is heterogeneous, and to study those with a definite history of a tick bite and persisting symptoms very closely (regardless of serological test results) as their own separate group.

Mr. Tuttle's remarks reflect the fact that regardless of what side of the Lyme disease controversy you stand on, people are suffering a lot and heated debates on the state level end up weighing in on the side of the patient. Access to extended treatment is winning - whether the IDSA approves or not.

Auwaerter et al's response, to me, is predictable and to be expected. It would be appreciated if one day they were to focus more on the content of Mr. Perronne's position and join him in it by finding a way to initiate research which directly helps patients who are suffering with persisting symptoms and to stop spending an inordinate amount of time focusing on whether or not certain doctors and patients promote pseudoscientific practices and beliefs. They've already made it quite clear to The Lancet and the public what their position is.

One has to face reality here: If some alternative to current treatment practices is discovered which is safe and effective, patients will use it. In the meantime, patients who are suffering greatly will try any of a number of drugs, antibiotics, herbs, and supplements which are available in order to get well regardless of the IDSA's position on their condition and its treatment.

Whether these attempts to relieve symptoms are scientifically backed or not is irrelevant to someone who is seeking relieve pain and is nearly (if not completely) on the verge of suicide with pain. It is this human element of suffering which Auwaerter et al do not seem to want to contend with and address in a compassionate way - nor in a clinical, scientific way by either engaging in research which directly resolves the controversy or by finding the treatment of all treatments based on their own hypothesis of what causes persisting symptoms.

Patients with persisting post treatment Lyme disease symptoms have often tried mainstream approaches to treating their conditions when they were diagnosed with something other than chronic Lyme disease - only to either experience no improvement or even experience a significant worsening of their condition. The use of steroid-based drugs used for treating rheumatic conditions has been one such example of where patients with chronic Lyme disease have tried them based on an apparent diagnosis of a rheumatic condition - only to get sicker and become more symptomatic. Why is that? Someone needs to research this, too.

At some point I need to write a detailed scientifically cited response to Auwaerter et al's original letter to the Lancet instead of the rant I wrote in response to the abstract alone last year. At the time, I was too personally offended that I and my condition were equated with pseudoscience and my offense led to ranting rather than a rational, objective calling out of each point in the full text with a substantiated counterpoint of my own. 

It's difficult to be without bias. As a person suffering with the fallout from Lyme disease and Babesiosis, I cannot be completely without bias no matter how hard I try. But I can try to read the scientific arguments and research that different parties put forward and weigh them independently of how rotten I feel. It is possible, even if at times difficult. 

In the end, I genuinely want someone to just figure out what has brought me to the level of suffering I've experienced over the past several years - even if in some of that figuring out the cause turns out to differ from that which I've suspected. Fine. Just find it, and find a treatment that gets me back to my old self. 

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0 Phage-holder

Rather than use the term "placeholder" I decided to use "phage-holder" because this post is going to be all about bacteriophage and phage therapy.

First, I came across this Nature blog post from Jim Caryl from last April - "No action today, no antibiotics tomorrow..." It outlines the serious problem of growing antibiotic resistance to infection and proposes different technological solutions for combatting resistance.

Jim advocates the revamping of our current drug manufacturing system to produce new antimicrobial therapies based on new targets as well as remodeling old antibiotics with high toxicity so that they are less toxic. He is not as enthusiastic about the application of phage therapy, citing a need for more efficacy testing and double blind random control trials. Those who commented on his blog, though, are strongly in support of phage therapy and think it has much promise.

 If you are a Lyme disease patient (or care about someone who is) then his fourth item on his anti-microbials-of-the-future list may interest you - if the data is there to support persister cells as part of Borrelia burgdorferi's pathogenesis:

"The current model for drug discovery is towards drugs that interfere with actively growing bacteria, however, bacteria aren't always actively growing. I've written before about how being in a different growth-phase can render a bacterial cell resistant to antibiotics. This can lead to repeated flare-ups of the infection until, eventually, true genetic resistance evolves that allows the bacteria to survive, and continue growing in the presence of the antibiotic. Thus there is the proposal that as part of enhanced efforts in drug discovery, that a platform for developing drugs at slow- or non-growing bacteria be practised."

Check out Jim's well-written post, and check out the comments.

Second, I periodically see what's new in terms of phage therapy education and outreach in the United States - and in particular, drop by Evergreen State College's (ESC - Olympia, WA) pages on bacteriophage research.

If you take an interest in learning more about phage therapy, this is a good place to start for an English-language based repository. On ESC's web site you can learn about phage research around the world, including at the well-known Eliava Institute in Tblisi, Georgia - and there are interesting links such as one to a new journal, Bacteriophage, the first international, peer-reviewed journal dedicated to all aspects of bacteriophage research, ranging from basic phage biology and taxonomy to advanced bacteriophage-host cell interactions and various practical applications of bacteriophages.

If this is really your thing, you might want to prepare for the next International Phage Biology Meeting in 2013, with more details  about this meeting to be announced here in the future: http://blogs.evergreen.edu/phage/

Third, little late to the game on this one - but I have news on the business side of phage therapy in the United States. I discovered the web site of this company, Amliphi Biosciences Corporation, which states "AmpliPhi Biosciences is the first company to demonstrate the clinical efficacy of phage technology in a controlled, regulated, human clinical trial."

While their focus is on researching bacteriophage therapy for resistant Gram-negative bacterial infections, there is currently no development underway for Borrelia burgdorferi infections (which if you'll recall is not exactly Gram-negative bacteria anyway). But the research they are doing may improve and save the lives of many people struggling with resistant bacterial infections such as children suffering from chronic ear infections and adults suffering from cystic fibrosis. In fact, AmpliPhi is receiving initial funding support from Cystic Fibrosis Foundation Therapeutics, Inc. (a nonprofit affiliate of the Cystic Fibrosis Foundation).

Check out their product pipeline page to learn more about the clinical trials they have been conducting on phage therapy for helping people with these conditions as well as for other purposes.

Last but not least, I wanted to announce that one of my own pages on bacteriophage will soon be updated due to a major oversight that was called to my attention through my recent exchanges with Dr. Alan MacDonald on Lymenet Europe. He posted some images of Dr. Alan Barbour's early research on Borrelia burgdorferi where a B-3-like phage was found on and in spirochetes (Why are there so many Allens or Alans doing research in this field?). This is research that definitely should have been included in this page and I am very remiss in not including it.

I also realize that part of it needs rewriting in general because a few basic concepts about how phage therapy works need to be included - including the fact that each phage is often very strain specific. My current writing suggests to the reader that one phage will handily kill all Borrelia burgdorferi when that is not so - though a genetically modified virus which attacks Borrelia might be altered in such a way as to inject different Borrelia with something that is disruptive to a common Borrelia target. Phages "in the wild" do not operate in this fashion - they are found and they evolve on their own and are strain specific. So expect this page to be updated to include this information soon.

One may wonder why Camp Other is so interested in bacteriophage therapy. The reason is simple: There may be some way in the future to detect which strains of Borrelia someone has been infected with at the site of a tick bite and develop a phage-based ointment that will prevent infection from disseminating. It will do so without the problem of antibiotic resistance cropping up and without all the horrible side effects that antibiotics can bring including the risk of contracting C. difficile.

So I would very much like to see this be made possible, though there are inherent difficulties in finding lytic phages for Borrelia and the issue that "handedness" ("male"/"female") of the bacteria is related to finding effective phages, much like the "handedness" of sugars has different effects in the human body.

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6 Viral Genetics Issues Latest Report On Chronic Lyme Clinical Trials Status

Recently, Viral Genetics posted an update on its move towards testing its product, VGV-L, for treating chronic Lyme disease.

Research for this product was funded by two Lyme disease advocacy organizations, Time For Lyme, Inc. and the Turn The Corner Foundation.

You might be familiar with the project lead, Dr. Karen Newell Rogers, whose research was mentioned at the LDA-Columbia University Lyme 2011 Lyme and TBD Conference.

I previously wrote about Dr. Newell Rogers research, and highlighted the following excerpt from a summary report on her conference presentation:

"Dr. Karen Newell Rogers presented a talk about novel ways to target chronic inflammation and chronic immune activation among patients with chronic Lyme disease. 

She pointed out: 

"[...]Some researchers would argue that chronic inflammation requires the continuous presence of bacteria, whereas others would suggest that continuous presence of bacteria does not always result in inflammation and that exacerbations of chronic symptoms could result from infection with a different organism--or that chronic symptoms could re-cur from unrelated pro-inflammatory events. Potentially reconciling these seemingly conflicting perspectives on the mechanism of Lyme disease may be the effect of Borrelia burgdoreri’s bacterial by-products on Toll Like Receptors, (TLR)-mediated immune activation. 

TLR appear to be the “gate-keepers” of an inflammatory response. Bacteria, including Borrelia, produce products that, by binding to TLRs on the cell surface, promote leukocyte activation, cytokine production, and acute inflammation. In some genetic backgrounds of mice, acute inflammation is sufficient to fight off infection and resolve disease. In other mouse strains, the pathogens, or in this case the bacteria, get past TLR-induced inflammation and remain symptomatically undetectable in cells and tissues (Barthold, etc); Barthold et al. have found that no matter how severe or mild the disease in any of the genetically inbred strains of mice, there was no more inflammatory disease when the bacteria were eliminated."

So what is VGV-L, and what does this soon-to-be-tested product supposedly do? It would seem to fall more in line with Dr. Newell Rogers' research addressing chronic inflammation than addressing chronic infection, based on what I've read thus far.

According to Viral Genetics' web site, VGV-L seems to be related to Targeted Peptide Therapy (TPT), a therapy which uses synthetic peptides to "trick" cells that may be responsible for harmful symptoms and makes these cells vulnerable to the body's natural immune response mechanism.

What exactly are targeted peptides? According to Viral Genetics (VG), targeted peptides are custom-designed protein fragments that work to modify certain immune system reactions that they believe cause or worsen some inflammatory diseases.

More about Targeted Peptide Therapy is found on its own VG page:

 "Autoimmune diseases occur when the body reacts to itself or self-tissues. In some cases, an external threat from disease-causing organisms activates too many of certain types of immune cells which in turn cause damage the body. A physical trait of those cells also makes them impervious to the body's natural defense system that would ordinarily limit their numbers.  

TPT works by tricking those impervious cells into dropping their defenses. They can be fooled into releasing their protective shields, swapping the shield for a synthetic TPT-polypeptide instead. Those peptides, created by our research team, have been engineered to make the cell susceptible to the body's natural defenses. We expect our TPT drug compounds to enable the body to destroy the cells that help trigger the symptoms of autoimmune diseases." 

 So what this sounds like is it a treatment for chronic Lyme disease which lessens inflammation by modifying the immune system in some way.

And judging from the content above, I am wondering if the "certain types of immune cells" of which there are too many could be referring to the overabundant low quality plasma cells that were found in lymph nodes in Tunev and Barthold's study, "Lymphadenopathy during Lyme borreliosis is caused by spirochete migration-induced specific B cell activation."?

So what is the status of getting VGV-L's TPT to the clinical trial stage?

Excerpts from its letter to shareholders indicated that due to the time required for coordinating schedules, screening clinicians, and presenting the data, that it was only "recently that we neared finalization of securing a clinician to act as lead on this program. We expect to be able to discuss this in much more detail very soon, but I am very confident that we will be filing our pre-IND for our Lyme disease candidate this year."

 For those who are reading along who do not know what a pre-IND is, "IND" stands for Investigational New Drug, and any clinician who wishes to begin clinical trials to test a new drug must file for approval from the FDA.

From the FDA's own site:

"During a new drug's early preclinical development, the sponsor's primary goal is to determine if the product is reasonably safe for initial use in humans, and if the compound exhibits pharmacological activity that justifies commercial development. When a product is identified as a viable candidate for further development, the sponsor then focuses on collecting the data and information necessary to establish that the product will not expose humans to unreasonable risks when used in limited, early-stage clinical studies.

FDA's role in the development of a new drug begins when the drug's sponsor (usually the manufacturer or potential marketer) having screened the new molecule for pharmacological activity and acute toxicity potential in animals, wants to test its diagnostic or therapeutic potential in humans. At that point, the molecule changes in legal status under the Federal Food, Drug, and Cosmetic Act and becomes a new drug subject to specific requirements of the drug regulatory system."

(For more specifics, see: http://www.fda.gov/drugs/developmentapprovalprocess/howdrugsaredevelopedandapproved/approvalapplications/investigationalnewdrugindapplication/default.htm)

I am finding this all very interesting and will continue to watch Viral Genetics as they move towards the trial phase.

I wonder what requirements will need to be met for study participants - and how many chronic Lyme disease patients would be willing to sign up?

Would you?

Additional Information: http://www.viralgenetics.com/investors/2012-Letter-to-Shareholders.pdf

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21 Rant: Why Dealing With Lyme Disease Drives Me Crazy. (Part 2)

Note: The content that follows is part two of a personal rant and is atypical of most content as well as context covered by this blog.

This is part two of a two part rant. Part one can be found here: http://campother.blogspot.com/2012/01/rant-why-dealing-with-lyme-disease.html

To continue where I left off, and to share other reasons as to why dealing with Lyme Disease drives me crazy from a patient's perspective:

7) Because the organizations and institutions which have the most influence on treatment and research for my condition are engaged in a political battle of the wills where if "you ain't with us, you're against us". It's a position where being in the middle is difficult at best.

Most patients with persisting late stage untreated Lyme disease and those with post treatment Lyme disease have voted to stick with ILADs doctors and other non-ILADS LLMDs for treatment, and support the organizations and advocates which support ILADS and other LLMDs. They think that a chronic infection is the cause of patients' persisting symptoms.

Most chronic Lyme disease patients and advocates view the IDSA Lyme disease guidelines group as being highly restrictive in terms of treatment of their disease, and not only that - think that the IDSA Lyme disease guidelines group does not care about patients and only cares about profit. The IDSA guidelines group thinks that some autoimmune condition is the cause of patients' persisting symptoms.

One segment of the chronic Lyme disease patient population has grown a general distrust of scientific researchers and allopathic medicine in general. This growing group of patients voices its dissent against not only the IDSA - but any group which may be viewed as profiting off of those with chronic illness in some way: The FDA, pharmaceutical companies, government and non-government researchers with patent rights to their technology, grad and post doc microbiology students, and then some.

Watching all this go by and unfold,  the position I'm in is that because I am not interested in completely aligning myself with any one of these groups in this battle, that I have been viewed by some patients as not being loyal enough to the chronic Lyme cause and not loyal enough to supporting alternative medicine. And for some small portion of my readers,  I'm not loyal enough to the hypotheses about chronic Lyme disease which the IDSA espouses, either, because I have this seemingly odd idea that some people may need more than the standard amount of antibiotics set out in their guidelines.

Because of this, sometimes I have not been able to get the support and understanding I need as a patient from other patients going through the same thing - presumably because they view me as fence sitting and it makes them feel distinctly uncomfortable. Heck, last year I was even banned from participating on one Lyme patient support group - so I have a sign that at least to some people, I'm not welcome.

But I'm not here to make people feel uncomfortable. It's not what I want to do, though I acknowledge that some of what I write may bring up uncomfortable feelings. What I do want to do is figure out what the truth is in this area full of conflict and get a greater sense of it. Move past any ideological conflict and look at the science. This is why I do research and try to avoid what all the pundits are saying - whether they are pro or against something - whatever it is.

I think that what causes persisting symptoms in patients is not a one answer deal, after all the research I've read. It's not that simple. And I wish that all of those involved in the study and treatment of Lyme disease would come forward and say that, and admit that they do not know what the best treatment is for everyone.

We need a different starting point than where we've been gridlocked over the treatment for the past two generations of Lyme disease patients. Why can't more people consider that those with persisting symptoms may have them both due to persisting infection as well as changes to the immune system? Or that the cause may differ in different patients? Do more research into how different strains of Bb and genetic backgrounds (e.g. HLA-DRs) of patients influence outcomes?

Two of the most supportive and outspoken figures in the Lyme disease community see the need for middle ground as I do - Pam Weintraub and Dr. Brian Fallon. I think we need more middle ground to be covered if we're going to make any progress on understanding chronic Lyme disease and getting better treatment for it. More research is really the key. More fighting over cause is not.

8) Because parts of the mainstream media continue to sensationalize this taking of sides and fails to examine and share all the scientific evidence available (and areas where evidence is also lacking on either side) about my condition, it contributes to the growing problem of scientific illiteracy in this country. It also contributes to dismissive attitudes towards patients with my condition.

I don't know how to say it enough or loudly enough to be heard: The Chicago Tribune's article, "Chronic Lyme: A dubious diagnosis" is exactly the kind of journalism that fails to address the issue of chronic Lyme disease from a scientific perspective.

I spent a fair chunk of my time deconstructing the article and pointing out how it was about two doctors' disciplinary records and flawed alternative treatments for chronic Lyme disease - rather than about whether or not Lyme disease could actually be a chronic infection. That issue is never really discussed throughout the entire article when one would think that based on the title that would be exactly what it would have been about.

Whether one believes chronic Lyme disease/post Lyme disease syndrome is caused by a chronic infection or not should not affect the fact that patients are suffering from a condition which is not "all in their heads".  Articles like the above characterize doctors and patients in the worst light without getting the full picture or an accurate one, while simultaneously failing to examine, state, and challenge the range of research on the disease itself. Anyone reading that article would walk away not having learned more about Lyme disease in general - let alone any reason why some people may think it can be a persistent infection and other people think it cannot.

This article is not the only article or the first article to become a meal to feed the trolls. There have been others. And because so many of these sensationalist articles have been printed, they have made it more difficult for the public to take my condition seriously. A condition which - as you may recall - an academic researcher said that at its worst was equal in severity of symptoms and lack of functionality in patients with congestive heart failure.

9) Because having my condition has been life changing and entirely game changing for me. All the plans I had before I got ill have been completely trashed. Many opportunities I would have said "yes" to I ended up having to turn down. And as such, for a number of these plans and opportunities - there are no second chances.

This is the same story that many people could say about other conditions, I know: Car accidents leave people with injuries and disabilities that can affect them for the rest of their lives. Cancer and many chronic conditions can affect people for the rest of their lives, too. Someone with my condition shares this much in common with many other people. And we might improve; we might not. No one knows.

That said, I can not easily describe just how much I have lost to my condition and complications related to it. Lost income and the loss of my career and the ability to work, lost opportunities to travel and go hiking in the mountains, lost time spent with friends and family because of illness preventing me from participating in events, lost positive life changes such as buying my own home and filling it with the things I want... all of these things and more have happened to me and many other people.

But these are the big things. Sometimes even the small things can be a noticeable and painful loss. Not being able to wash my own back put me at an all time low when it happened.

10) Because just living with my condition and all the symptoms it causes is crazymaking, and few people really understand it.  They don't "get it". Seeing someone with a broken leg makes it clear to someone else that something is wrong and what their limitations are - seeing someone like me makes it clear as mud what is wrong and what my limitations are. And things change from day to day.

This is a more difficult thing to explain, and perhaps some of it can be better articulated by web sites about invisible illnesses. My own attempt at it is to say imagine that you have a splitting headache almost constantly, have trouble taking full breaths day and night, your muscles ache - and ache worse with any repetitive motion, even after a short period of time, and your joints ache all over your body. And no one can see the pain you are in. At most, they can see you are moving more slowly than they would be. But other than that - you appear normal to them.

And tomorrow, those symptoms might change. But still be limiting and make you dysfunctional in different ways.

This is a small snapshot of how life has been for me. Sometimes it's better, sometimes it's worse. But if it weren't for walking around with a cane or borrowing a scooter to get around, a lot of people may not see that anything is wrong with me. Someone with a broken leg has the benefit of an obvious visual sign they are messed up. I don't. And because of this, some people have either forgotten I'm not well when they next see me - or worse, don't believe I am unwell in the first place.

And if I am at home in bed? That's a truly invisible illness - out of sight, out of mind.

That is its own problem: lack of external confirmation and validation of my condition.

Another problem related to this is my not knowing what to expect from my body and to expect from myself from one day to the next - and sometimes one moment to the next.

I may be able drive to the doctor's office, the hardware store and grocery store and come back home and still have the strength and energy to do something else the same day. I may not, and have trouble getting out of bed at all. On those days - if I get back and forth to the bathroom - that's my travel for the day.

Attached to that is a host of problems around how difficult it is to make plans and keep them, and the economic, social, and other costs that come with poor follow-through.

I feel alienated about living in my own body. It doesn't cooperate with what I want and need to do. And at times, the pain, fatigue, and isolation are hard to bear. I hurt. I've lost sleep on many nights because pain kept me awake. I've had to struggle through that pain alone, and wished there was someone to keep me company through it - yet at the same time, did not want to subject anyone to my misery.

Sometimes I don't even want company - and the funny thing is, during those times I don't like my own company, either. I become a total ass. I find my own ruminations while ill to be counterproductive and leading down the path to a dark and deep sense of hopelessness, one where there is no point in making plans for the future because I'm likely not able to keep them anyway. Serious depression here.

And even when I reach a stretch of acceptance of my condition and its limitations (and there is acceptance, but it's part of an ongoing process where it is revisited and not a destination where I can park),  living with it is still so damn HARD...

When I am around other people, I feel like the ghost at the table. I am there, but mentally and physically not solid. I can affect things, but only indirectly and weakly compared to one's normal human form. I can hear people and engage in conversation with them, but from my own perspective it always seems as if there is a thick layer of atmosphere I have to communicate through where speaking requires extra force to push the words out of my mouth and listening is like trying to decipher the words of people talking underwater. All of this communication takes extra effort I never needed to make before I got sick. I never would have even imagined one could get sick in such a way that normal social interaction would be draining. This is what chronic fatigue and brain fog are like. I didn't know it until I got it.

This is hard on an extrovert, and over time I've had to become more and more introverted in order to cope and adapt to my condition. I "don't have any spoons" to be the energetic and engaging person I used to be. I don't have it in me. Only a few people close to me are lucky enough to see a glimmer of my former self for brief moments of time.

In a very real sense, my condition has robbed me of being me. Which is one of the highest insults I can imagine any condition causing to anyone. I've been forced to become someone I do not want to be because of my condition. How sucky is that? It's pretty sucky.

So this is the end of part 2 of why dealing with Lyme disease drives me crazy. Maybe there will be a part 3 sometime in the future - I don't know. For now, I'll leave it at this.

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11 Rant: Why Dealing With Lyme Disease Drives Me Crazy. (Part 1)

Note: The content that follows is part one of a personal rant and is atypical of most content as well as context covered by this blog. 

I've been meaning to write this entry for a long time.

Many attempts have been made before this - many which have been scrapped because they neither met my general standards for publication nor managed to convey what I wanted to express.

 But I have to get it off my chest because face it, I've been dealing with this condition and its complications for years now and every so once in a while I've gotta just let it all rip, Camp Other style.

Why Dealing With Lyme Disease Drives Me Crazy

Where do I even begin?

Let's start with the more obvious, from a patient's perspective.

1) Because the lack of early diagnosis and treatment occurred for something which should have been obvious to not only the first family doctor who saw me - but the second one. 

I had a textbook case of Lyme disease: EM rash, history of a tick bite, and symptoms consistent with a Lyme disease diagnosis. I knew the geographic location in which the tick had bitten me because I found the tick within a day of hiking in an endemic area. The state health department and university researchers knew it was an endemic area.

The index of suspicion should have been high, but I was treated dismissively and told that Lyme disease doesn't happen in my state or the area in which I'd been bitten.

Admittedly, I myself did not know how endemic the area was for Lyme disease until after I received my bite and went to my first doctor's appointment. It's after that point when I decided to look it up, and discovered the doctor had made a mistake. People are human and doctors are human and make mistakes, but for me this has been a very costly one - the doctor I saw should have known more about surveillance and epidemiology in the area than I did.

The second doctor had an opportunity to see my larger than 5 cm expanding rash and still thought I just had a sinus infection. When I brought up that I thought I may have Lyme disease, the doctor ran an ELISA -  but this testing was too early to show an antibody response. What the hell, I already had an expanding EM rash - I was treatable on that count alone. Again, a sign of ignorance about the disease, even from a basic IDSA/CDC/State health department point of view.

After having read many other patients' stories about having had a similar experience, I can only suggest that doctors need more education about tickborne diseases and to be more vigilant about immediate treatment as the risks of early treatment are far less than managing complications that come from disseminated and late stage infection.

 2) Because of the lack of a timely and accurate diagnosis and treatment by a family doctor, I ended up seeing an LLMD for diagnosis and treatment.

After my initial research of Lyme disease, of course I came across information about the controversy in Lyme disease and both information singing the praises of LLMDs and how they saved patients' lives as well as information condemning them for their overpriced fees, lack of taking insurance, rude support staff, difficulty in getting appointments, and unproven protocols. I heard both sides from patients. I also got to hear criticisms about LLMDs from some science writers and medical professionals about how their diagnostic and treatment methods were not well supported by science and that LLMDs were only out there to take advantage of the gullible.

I got an earful early on, believe me. But despite hearing the negative reports, I still found myself in the position of having to make my own decision as what to do next and soon, because I was so sick.

I had to do something. I could barely think straight at the time. I was so ill I could barely follow someone else's conversation. I could only read in very short spurts. I was exhausted, in pain, could not work, and could barely take care of myself.

I had to network with people and figure out what I was willing to do. I had to rely on others' suggestions and concerns more than I usually would simply because I had trouble thinking straight. It was rough going.

In time, I realized not all LLMDs were cut from the same cloth and I already knew why I was sick - so controversy or not, I was going to go where I knew someone would help me. If an LLMD was going to treat my Lyme disease and the doctors I'd seen at my supposedly highly rated clinic weren't, I was going to see an LLMD. Simple as that.

At the time, I didn't want to get involved in the controversy at all - even as I felt sympathy for everyone dealing with long term symptoms. I thought that as long as I was treating this infection early that I would be one of the lucky ones - I would take antibiotics for 3-4 weeks and not have to face persisting symptoms.

However... I was wrong. Only I didn't know it at the time. My infection disseminated fairly quickly early on and I was already sicker than others who had acute Lyme disease and received treatment early. I developed symptoms of a coinfection later on that I would not have known to look for or even suspect. The LLMD did suspect this coinfection, then ran tests - for which I was positive - and as a result, I was treated for it and my symptoms improved.

I am still in less pain than I used to be and some of my symptoms completely disappeared from this treatment, so I think there were measurable gains and seeing an LLMD for treatment was the right thing to do when I did it. I genuinely had Lyme disease to begin with - and if two other doctors were not treating it - then someone else damn well was going to treat it.

My question is why did I have to see an LLMD for all of this when a well-trained family doctor should have known from day one what was wrong with me and treat it back then?

Maybe in my case, weeks or a few months of not having treatment or having inappropriate treatment made all the difference in the world for my outcome. The earlier the better, they say. And I could have had that and sidestepped this mess had the family doctors I'd seen earlier on knew what they were looking at and got right on top of it.

3) Because for some reason, having a Lyme disease history is either not calculated into any new symptoms I present to most doctors (both family practice and emergency medicine) and each symptom set I experience is either attributed to something entirely new and separate - or I am told that there is nothing the doctors can do for me (not even palliatively).

Again, I see this response as a lack of education of the doctors in question. I think that doctors have to take into account that even if they themselves do not believe in a chronic infection model of Lyme disease which the Lyme disease patient community supports - that they need to at least consider that the patient in front of them with a history of Lyme disease may be suffering complications related to having had the infection, and to consider the possibility of a coinfection or relapse of a coinfection where symptoms appear to overlap.

If Babesia is a growing problem in our national blood supply and has killed people through transfusions, it seems important to me to rule out Babesia in patients whether they have a mild presentation or a serious one. The risk to everyone's general health is involved.

Sometimes I think it is not just a lack of education which prevents family doctors from dealing with Lyme disease patients. Sometimes it's a matter of fear of not having enough expertise and making a mistake, and not knowing to whom one should refer a patient. If family doctors were better trained to begin with, though, then they could gain that expertise themselves and be the front line for diagnosis and treatment as most patients expect them to be.

Other times, I think part of the issue is that some doctors have decided to overgeneralize about what they read from various medical journals, letters, and reviews, wherein the author states that at least half of those patients claiming they have chronic Lyme disease never had Lyme disease in the first place. Once having digested that nugget, the doctor then may go on to think that a patient who tells them they either have or have had Lyme disease that because it's at least a 50/50 chance the patient never had it in the first place that it is data not worth considering.

Given the growing number of documented Lyme disease cases reported to the CDC annually, I'd like to suggest to these doctors that they nip that thought in the bud and just look at each patient as an individual and consider that their Lyme disease history may play a role in their current symptom set. They don't even have to enter into the controversy to go there.

4) Because of the changing face of the medical profession and doctor-patient relationship in an era of managed care, anyone with a chronic or hard-to-define illness is getting shortchanged these days - and sadly, at times readily receiving a mental illness diagnosis when the evidence for one is weak at best (or at least not the primary cause of their symptoms). 

After reading many different patient forums - not only for Lyme disease, but for conditions like fibromyalgia and CFS/ME or even rare, orphan illnesses which most people do not know anything about - I've seen this happen time and time again: Doctors trying to nail down a diagnosis for a patient within that 10-15 minute appointment window, and when there seems to be "too much going on" for the patient, the immediate suggestion by the doctor is that the patient's condition could be psychological.

Now, I acknowledge that a number of physical symptoms are related to depression and anxiety, as well as chronic stress. And if one is suffering from these conditions, they need to be recognized for what they are and receive proper care. However, I think some doctors are too quick to make this judgment and need more time to listen to patients and create a list of non-psychological physical, endocrinological, infectious, and/or immunological disorders and conditions to test for first before referring patients to a therapist.

Or if the person is obviously psychologically ill, to at least consider a biological basis for that illness or that it may be contributing to it. There is no reason not to run tests while referring one for therapy just to deal with the frustrations of being ill, either - and a caring, compassionate doctor will know how to finesse the situation so that both physical and mental bases are covered without being dismissive towards their patients.

For what it's worth, my family doctor has not diagnosed me with a mental illness. I myself have sought out therapy for depression while dealing with illness - and of the two therapists I have seen, both have told me to keep talking to doctors because it's their assessment I am physically ill and disabled and any depression I have stems from my health - not the other way around.

The biggest problem I have had with being told "it's all in your head" came from ER departments who could not figure out what was wrong with me in the handful of hours that I was there.

5) My treatment has not led to a full recovery or even closer to a life where my symptoms are stabilized.

Some patients within the Lyme disease community have gone off on me for what I'm about to say, but it's an honest assessment about where I am: I have come to accept that I may never regain my former health again and be 100% cured of the symptoms I'm having.

I don't have any expectations that I can return to my old life and do what I used to do and have the same amount of energy I once did. Even if I could be assured of being cured now, there may still be residual damage in my body - plus I am getting older and my body has been deconditioned by years of nearly total sedentary living.

At times I have felt like I've been fed a false hope that I could recover 100% from treatment, because I have certainly tried a lot, above and beyond what the original IDSA Lyme disease treatment guidelines stated. I have not fully recovered, and it's already been several years since I was first infected.

While I do what I can within my limits to try to stretch and improve my health to the degree that I can, I'm aware that there is so much that isn't known about or understood about my condition that it doesn't seem unreasonable to me that I may not get back to my previous state of health before the tick bite.

About the best thing that has helped me was Mepron for Babesia. It helped take care of a number of the most debilitating symptoms I've experienced. But everything else has either resulted in temporary gain or made me feel so much sicker for a longer period of time - that for months at a time, I actually feel much better doing nothing at all.

This is not to say I will never try anything again. It's to say that I want more evidence that the next thing I try is going to make a positive difference and have a good idea of why and how it is going to make a difference. But it seems to me that as time goes on, I still have bad days and less bad days and occasional good ones regardless of what medications or antibiotics I'm taking.

My experience leads me to believe that I either have permanent damage or long term damage that will take years to heal - or that the proper treatment for my condition has yet to be discovered. This is one key reason why I think more research - particularly treatment trials - is important.

6) Because there is a lack of societal and institutional support for someone suffering from my condition, as well as the lack of a streamlined process for acknowledging and supporting how my condition disables me - a condition which should receive official recognition as a disability.

Mainstream medicine has societies for cancer research - multiple societies including ones for specific cancers. It has workshops and support groups for cancer patients. It has programs on nutrition and cooking for cancer patients on site at hospitals and clinics. There are large scale races for the cure and other fundraisers. There are conferences on cancer which some patients are invited to - and some not. And there are many oncologists and oncology staff members and therapists who specialize in dealing with the issues cancer patients face. So on an institutional level, the need for support and education for cancer patients is recognized and accommodated.

When it comes to other doctors' attitudes about oncologists, they do not envy their jobs and have respect for the difficult job they have to do. Being a family doctor, you are more likely going to see minor problems you can fix and not have to watch someone die of cancer before your eyes.  So there is a certain amount of personal and professional respect from many doctors towards oncologists just because of what they have to deal with on a daily basis.

From the perspective of someone who has had post treatment persisting symptoms of Lyme disease (however you name or characterize my condition) I have felt marginalized and that the kind of support I could use has been lacking.

There is nowhere near the infrastructure available for someone with my condition that there is for someone with cancer. If it weren't for some online forums, a few LLMDs, and a few organizations that bend over backwards to recognize that my condition is debilitating - there would not be anyone at all to acknowledge and validate my disability.

I deal with a condition where the doctors - LLMDs - who try to treat patients like me do not receive respect from a number of other doctors, some researchers, and some members of the media. And as patients we will continue to see these doctors not because we are gullible - but because they are actually trying to help us.

If those whom disrespect them have an issue with this, then instead of knocking the doctors who see us and the treatment we undergo, they should make more of an effort to provide patients with a helpful option under their care. We will vote with our feet if you have anything better to offer. And believe me, we are all such big mouths in the Lyme disease community that we would let everyone know if others' approach and treatments really helped us. Even if only symptomatically. Even if it wasn't a cure.

Now, admittedly, there are fewer people who suffer from my condition than who suffer from cancer. But even so, it seems that no matter how many or how few people suffer from a medical condition and/or disability, that there should be a certain baseline recognition, acceptance, and accommodation for that condition or disability. Not just from patient organizations that patients have had to put together from scratch - but from medical institutions, doctors associations, societies, and research groups.

There is something, though, that has troubled me about what makes post treatment Lyme disease (or as the IDSA puts it, "Post Lyme Disease Syndrome") different from other conditions (orphan, or of unknown etiology) that has made me wonder how it has come to be treated as it has been, historically:

Unlike other conditions where the cause is unknown and speculated about, mine does have the distinguishing characteristic of having been triggered by Lyme disease in some way. There is a clear issue of cause and effect here; of some sort of relationship which has already been defined in medical literature.

But people in my situation don't even have the benefit of having the label of "Post Lyme Disease Syndrome" holding significant meaning for them when they apply for disability - even though a number of us suffering with persisting symptoms would be considered to have this condition by some medical professionals.

In the Klempner trial, it was noticed that those most severely affected by this condition had a quality of life and functionality similar to patients with congestive heart failure. This statement was not made by an LLMD (for those whom have issues with an LLMD and may be dismissive about such statements) - this was a statement made by an academic researcher who studied patients suffering with my condition, whatever label you want to apply to it.

Somehow, it seems that whatever I have should be taken more seriously, and there should be more institutional and societal support for it. It shouldn't be a backbreaking effort to explain what ails me - with my medical history, test results, and clinical diagnosis, it should just be accepted as part of my reality and worked with, rather than denied and shrugged off.

Note: Minor edits for style made to this text January 28-29, 2011.

This marks the end of part one of my rant, Why Dealing With Lyme Disease Drives Me Crazy. Continue on to part 2 HERE.

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9 Recap Of Dr. Zemel and Dr. Cameron Chat

ZEMEL VS. CAMERON

I'm going to be posting comments here during the course of the chat, then offer additional feedback here afterwards.

So far, this is off to a slow start. I don't know if it's the live chat software or if the servers are flooded with Lyme disease patients, but it's 10 minutes in and we barely have introductions. Dr. Cameron apparently wasn't logged in or having trouble logging in.

Okay, now things are moving along, and questions about testing are being posted by the audience. Questions on how to test for Lyme disease and on seronegative Lyme disease.

(I think that the servers are really busy - huge lag time on my end. I emailed my questions in advance, and I don't know if they are taking a combination of emailed questions or live - what is the deal here?)

Not that Milton! We said
Milton Carrero!

Milton Carrero, live chat moderator just wrote, "Because the questions are so many, and often similar I'm trying address the most prevalent topics associated with Lyme disease" - I suspect only a small fraction of questions and comments that got emailed or posted are showing up here and they may not ever pick mine. Or yours.

Okay, now we're getting a mix of questions and answers on different topics, some personal and some general. One man asks about the relationship between lipogranuloma cysts and late stage Lyme disease, a good question about the existence of chronic Lyme disease being investigated by an NIH study, the ineffectiveness of oral antibiotics for neurological Lyme disease, one mother's question about the relationship between her daughter's symptoms of anxiety and depression after Lyme disease...

Is Lyme disease underreported, why not continue to treat the patient if he is suffering, what is the role of coinfections, treatment approach by each organization, question about neurological testing... It's hard to keep up now, and the questions and answers are a jumble.

Okay, it looks like it's wrapping up now... Dr. Zemel has to leave even though Milton said an extra 15 minutes could be extended for the live chat.

My questions never made it into the chat - did any of yours?

In case you're wondering, here is a copy of what I sent out:

---

Mr. Carrero, I'd like to ask the following questions of Dr. Zemel and Dr. Cameron for Friday, July 1, chat on Lyme disease:

For Dr. Zemel, I have the following questions:

1) Since there is evidence that Borrelia burgdorferi can be intracellular and studies indicate a small number of spirochetes can survive antibiotic treatment, what further studies can be conducted to provide evidence of persistent post-antibiotic infection in human hosts? Are there any currently being done which address these issues?

2) What mechanisms does Borrelia burgdorferi use which lead to immune dysregulation in the human host, and what research do you know of being conducted now that could determine how to prevent immune dysregulation in the infected human host?

For Dr. Cameron, I have the following questions:

1) Do you and other members of ILADS compare case studies and have you been working on conducting your own clinical trials based on those case studies? Lyme patients are sorely in need of more research for effective treatment and hopefully shorter term treatment.

2) Have you and other members of ILADS considered writing a detailed, scientific book with citations that explains for both public and medical professionals why your treatment guidelines are more in line with the state of the science on Lyme disease? If not, would you? It would be great to have a better understanding why long-term treatment is an effective approach for a number of patients beyond their own success stories.

Thank you,

Camp Other

---

My general thoughts about the chat:

I think that a live, in-person presentation of the material would be more effective than the live chat presentation. One thing which kept happening is that even with leaving audience participation limited, questions and answers to those questions were being posted out of sync and hard to follow.

The answer to a previous question asked minutes ago would show up directly after a question which was just posted, making it difficult for the audience to line up questions and answers.
In a real time, in-person presentation, an answer would immediately follow a question. I would have preferred something along the lines of streaming video with a split screen that looked like a Presidential debate if I have to watch something like this again.

It's not clear to me from where Milton was drawing his questions at all times. Sometimes they seemed to be taken from email, and at other times from the live chat box. I wish that the Morning Call could put together a page showing all of the questions they'd been asked because I (and I'm sure others) are curious about what they are - and perhaps leave it up to Dr. Zemel and Dr. Cameron to address them in writing at a later time either for the Morning Call or elsewhere.

At any rate, my questions did not get asked. I'm wondering how much success I would have if I wrote the doctors directly.

Okay, comments on what was said:

"Dr. Lawrence Zemel: Approximately 10 percent of people who have had Lyme Disease will develop persistant symptoms following appropriate treatment. Most of these patients are no longer considered infected. Previous research has shown that at least 50 percent of people with "chronic Lyme Disease" never had Lyme Disease in the first place. We as physicians are obligated to treat these patients in the most humane and safe way possible."

Dr. Zemel, please provide references and citations for your statements. Up to 10 percent of early cases of infection have resulted in treatment failure and by extension, persisting symptoms. In a number of studies, the authors retreated individual patients - in some cases, with IV antibiotics when the study was based on oral antibiotics. They went on to improve, when they hadn't improved earlier. Do you call this a discrepancy, or is this a case where a garden variety Lyme disease infection became neuroborreliosis and researchers decided to give the patient additional treatment? Consider the real life scenario of a patient who fails early oral antibiotic treatment and does not go on to receive additional treatment when symptomatic. How do you differentiate between an individual case which requires more treatment versus one which has immediately become an autoimmune case?

Can you please cite evidence and research on how many patients with Chronic Lyme disease never had Lyme disease to begin with? I'd like to know more about that research.

It seems to me that between the IDSA Lyme disease guidelines panel's article in the NEJM and your comments that you tend to focus on this group of patients who never had Lyme disease in the first place. I know nothing about this group. Please focus on those of us who have had it and conduct more research for effective treatment for us. We deserve humane, safe, and effective treatment.

"Dr. Lawrence Zemel: Dr Cameron is correct: early treatment with antibiotics may blunt an antibody response, but at that point, no further treatment is needed."

But what about early treatment which is inadequate? Dr. Zemel, you're making an assumption that everyone who gets treated early has had enough antibiotics for a long enough duration of time. If a patient only receives 10 days of doxycycline - which is what some patients receive from their doctors (and not 21-28 days of oral antibiotics) is that enough? What if the patient has neuroborreliosis and they only receive a short course of doxycycline? What if they are allergic to doxycycline - could they have treatment failure from having had a shorter course of a third line choice which was not the most effective antibiotic to use for Borrelia burgdorferi?

A patient, Steve Hollingworth, had this to say:

"The NIH's study brief at http://www.clinicaltrials.gov/ct2/show/NCT01143558?recr=Open&cond=lyme+disease&cntry1=NA%3AUS&cntry2=EU%3AIE&age=1&rank=1 actually says "It is currently unknown why some patients continue to have symptoms. One possibility is that the antibiotics have not successfully gotten rid of all of the bacteria. Current tests for Lyme disease cannot tell whether the bacteria have been successfully eliminated from the body." Care to comment on that government statement?"

and

"In particular, how does the doctor expect an infection in the brain by the Lyme spirochete to be eradicated by oral antibiotics, when no appropriate oral antibiotic is capable of crossing the blood-brain barrier?"

Go Steve! Please keep asking these kinds of questions! This is the line of questioning which is sorely needed in these discussions.

Sadly, they never did answer your question about the NIH, did they? But you got this response from Dr. Zemel on your second one:

"Dr. Lawrence Zemel: Steve, CNS infections are treated with intravenous antibiotics. Thank you for sharing the other information."

Steve, I take it that this answer was inadequate for you? It was for me. While Dr. Zemel is technically correct, he is answering the letter of the question and not the spirit of it. His response didn't address my concern that a number of cases of neuroborreliosis are missed in diagnosis and not treated adequately. Dr. Brian Fallon has cited research which shows a relationship between neuroborreliosis and the development of chronic, persisting symptoms. Diagnosing and treating neuroborreliosis early on seems key to me in preventing persisting symptoms.

Backtracking a bit, I'd like to make a comparison here on the responses both doctors gave:

"Dr. Lawrence Zemel: There are at least 3 studies that demonstrated the lack of benefit from the use of long-term antibiotics, suggesting that persistent symptoms are no longer antibiotic sensitive.

Daniel Cameron: Dattwyler published several papers on Late Lyme disease with success. Donta also described successes, The original Logigian papers on neurologic LD also described successes. The Krupp clincal trial supported treatment."

Dr. Cameron, you get points for citing names for research. Dr. Zemel, given my knowledge and experience in the Lyme world, I know which studies you are likely to be referring to - but for the sake of the audience, please give names and citations for your studies.

I often wonder why in mentioning any studies on long-term antibiotic use, most of the media does not mention Dattwyler's research - given he is a member of the IDSA and has done a lot of Lyme research. Same goes for Logigian, who has cowritten work with Dr. Steere.

Biostatisticians such as Alison Delong have analyzed the raw data and data reporting on the clinical trials and studies related to the 2006 Lyme disease guidelines and came to the conclusion that while the studies were well designed, the data could be finessed in different ways and extended antibiotic treatment did, in fact, help a sub-population of the groups studied.Her team concluded that more research is necessary - something I've been saying all along.

Further discussion by both of you about the data on this sub-population would be very insightful for us all.

"Daniel Cameron: The three trials -Klemner's and Fallon describe patients ill an average of 4.7 to 9 years after treatment failures. Patients this severe for this long need much more support and treatment than was offered in the trials."

Dr. Cameron, where are these patients now? How are they doing? Were they on any treatment after the trials? Has anyone followed up on them?

Time for another comparison, this time on the issue of if Lyme disease is underreported:

"Dr. Lawrence Zemel: Most likely under reported. Estimates are that Lyme Disease may be two to three times more prevalent than the CDC data

Daniel Cameron: There are at least 10 time more cases than the 30,000 cases reported to the CDC per epidemiologist projections. The chief epidemiologist in Connecticut estimate in testimony there are 24 times the numbers in their state."

So, guys, you both agree on something: Lyme disease IS underreported, anywhere from 2 times the reported number of cases are out there on upwards of 10 times. What about the citation by the CDC of there being 6-12 times the number of reported cases in highly endemic areas?

Could we please hire more epidemiologists and expand surveillance? I noticed it's getting the lowest amount of funding from the NIH. Can you shift funding from another area even if funding isn't increased for 2012? I'd like to aim for a more accurate estimate here if nothing else.

"Dr. Lawrence Zemel: Dr Cameron's data is pure speculation. Current testing for the Lyme bacteria picks up all spirochetes in North America, at all commercial labs. One lab in California has not been shown to produce reliable results."

Dr. Zemel, please provide citations and research to support your claims. Last I checked, research indicated that Borrelia lonestari is not picked up by standardized lab tests for Lyme disease, and according to Durland Fish, neither is Borrelia miyamotoi. There may be other strains which have yet to be discovered which are not picked up.

I'm hoping that Dr. Ben Luft's research will lead to better testing in the future.

"Dr. Lawrence Zemel: Chris: Persistent symptoms may represent earlier tissue damage even though the bacteria is gone. Futher more, antibodies to the Lyme bacteria may be toxic. Persistent symptoms do not necessarily mean ongoing infection."

Dr. Zemel, can you explain how to detect evidence a patient has tissue damage, persistent infection, or a combination of both?

In stating that "antibodies to the Lyme bacteria may be toxic", could you explain more to me and everyone else reading along? This sort of statement requires clarification and sounds off a cause for concern in everyone not knowing what you mean.

"Daniel Cameron: Many of these chronically ill patients remain sick. Symptomatic treatment with pain medication, Lyrica, Neurontic etc often fail. Antibiotics have helped many of these patients."

Dr. Cameron, do you have a record of case studies on these patients? Have you conducted any larger scale studies on the treatment of post-treatment Lyme disease patients (to use Dr. Maloney's term, which is growing on me) which show which patients receive benefit from pain medication and which fail?

I'd be curious to know, because some subset of patients I know of have received some relief from pain medication while others have not. Do they have different conditions? I have also found some people have had abdominal pain and other pain is relieved by use of small doses of specific antidepressants and tranquilizing medications such as Ativan. Any comments on this?

"Daniel Cameron:
Krause first introduced the concept that Babesia and Lyme together can lead to a severe presentation."

True. Krause also wrote the Babesiosis treatment guidelines for 2006, if I recall correctly, and acknowledges that Babesia can relapse and may need additional treatment - especially in immunocompromised patients.

"Dr. Lawrence Zemel: Coinfections do not interfere with diagnostic testing. If patients have high fever and other flu like symptoms, then tests for anaplasma and Babesia are indicated."

You know what? This is a good response. But time and again, what I have noticed is that the reasonable response the ID doctor gives is not what is happening with people who are showing up to their primary care physician or urgent care clinic. Based on patients' own self reporting, what I hear about are people who were not accurately diagnosed early on by their family doctor and went on to develop more severe symptoms

If the agreed upon mantra between ILADS and IDSA doctors is "early treatment usually leads to success", Dr. Zemel, what is your organization doing to ensure patients get diagnosed and treated early on for both coinfections and Lyme disease, since coinfections can increase the severity and duration of symptoms?

"Dr. Lawrence Zemel: IDSA recommends oral antibiotics for 10-21 days for early Lyme Disease, one month for Lyme arthritis, and intravenous antibiotics for CNS disease or persistent arthritis."

Dr. Zemel, why is the treatment range such a wide number of days? How does a clinician make the decision to use 10 days versus 21 days? What if 10 days doesn't work - is retreatment advisable then?

If someone takes the recommended 2 tabs of doxycycline after a tick bite as prophylaxis, does that prevent a seropositive test from developing later if the prophylactic treatment fails and the patient goes on to develop Lyme disease later? This is important to know, and to let doctors know not to rely to heavily on tests and look at the clinical picture.

"Dr. Lawrence Zemel: Dr Cameron, while physicians have a right to treat with antibiotics, they have a responsibility to practice medicine in the safest way possible, following established scientific principles. Avoiding science is not in society's best interest."

I agree with this statement on face value. But I don't always agree with the implied statement behind it, which is, "long-term antibiotic treatment is not safe and is not scientifically supported".

I think that more research is required on this issue, in terms of efficacy, and I think that long-term antibiotic use confers the same kinds of risks for many different kinds of infections. One has to weigh the risks and benefits in any medical treatment, and recognize there will always be risks. For example, I had to get a colonoscopy and sign a paper before the exam, a paper telling me there was a small chance I could die from the procedure - miniscule - but the benefits outweigh the risk. Do you make sure you don't have colon cancer or do you avoid the small chance of death? Most people would go for the colonoscopy. (No cancer was found, thankfully!)

"Dr. Lawrence Zemel: Medicine should be practiced by physicians and not by politicians. Physicians should engage in a dialogue with their patients."

Microbiologists and molecular biologists will hopefully split the difference for you all.

I'm really tired of your infighting. Jane! Stop this crazy thing! I want to get off!

"Daniel Cameron: We need many more physicians to diagnosed and treat chronic Lyme disease. We will have less chronic LD if they are recognized early. Finally, more physcians will offer more options for patient within HMO's"

Dr. Cameron, I'm going to emphasize this bit: We need many more physicians to diagnose and treat Lyme disease, period. Early on, along with coinfections, so that people can avoid persistent symptoms.

Saying that more physicians and HMOs should be participating in increased early diagnosis and treatment is a positive statement on your end for both patients and for how it reflects on ILADS, because critics have stated that as long as ILADS stands to profit from their position there is no reason for the current situation to change.

"Dr. Lawrence Zemel: Insurance companies respond to evidence based medicine. Since there is no evidence, that IV therapy beyond 4-6 weeks is effective, they should rightfully deny coverage."

Dr. Zemel, what do you do about insurance companies denying patients access to any IV therapy to begin with? Let alone beyond 6 weeks?

"Dr. Lawrence Zemel: A small vocal group of constituents should not be dictating medical care."

Oh, I agree. But what does science have to say about this? If all we have is a hypothesis and not a proven and accepted theory, is it ethical to base treatment guidelines on a hypothesis or is more research required?

"Daniel Cameron: We need more dialogue among physicians to come to common ground for the increasing number of patient who fail treatment."

Yes, I agree here, too. But first and foremost, we need more research, more meticulously reported case studies, and clinical trials using antibiotic and non-antibiotic treatments. If you've got a hypothesis you want to provide evidence for, I'd like to see both sides actually do something about it to help patients.

More treatment studies, please? And more scientific research on Bb pathogenesis, please?

Are you familiar with William Burgdorfer's "thirty years quote"? I want to hear Dr. Zemel's response to it.

"Dr. Lawrence Zemel: Lois: Most physicians are now testing for Lyme Disease if there is a reasonable likelihood that Lyme disease is present. It is probably not accurate to say that Lyme Disease is still underdiagnosed in most Lyme areas."

Do you have references and evidence to support your statements? What about patients in the southeast US? The midwest? The west coast? Canada? There are many reports patients have given of being told by doctors that Lyme disease is rare and not in their area when according to what limited epidemiological data is on record and their state health departments, Lyme disease is not rare. How do you recommend closing this gap between doctors' knowledge and knowledge of other institutions?

More Q & A:

"[Comment From Dedee]
Is it common for scientific principles to not be challenged? New discoveries cannot be made without challenging science."

"Dr. Lawrence Zemel: Dedee: I entirely agree with you. This is why scientific guidelines are continually updated. The problem occurs when the public and wayward physicians ignore the science."

It's a good question, Dedee. And Dr. Zemel, it's a good answer.

The problem is, I think treatment and diagnosis is lagging behind the science at the moment, and that right now, not enough is understood about chronic Lyme disease and Lyme disease's pathogenesis to effectively treat everyone in a timely fashion.

When one makes the statement, "We don't know what causes persisting symptoms", what that should mean is "We don't know what causes persisting symptoms". Period. The rest is speculation, and what the cause is may not be a uniform, one-size-fits-all answer. This is why I ask for more research, and I want to see more independent research from parties not invested in either "side", if there have to be sides at all.

Ah, look! This sounds like consensus. Sorta...

"[Comment From Ellen] My insurance will not cover the antibiotics my doctor prescribes and I can not afford them out of pocket. What are your thoughts on homeopathic and herbal treatments?"

"Dr. Lawrence Zemel: Ellen: I'm not aware of evidence to support alternative treatments in place of antibiotics. Can you please educate me?"

"Daniel Cameron:
Many of my patients with chronic issued try many different alternative medications. We need more research on new strategies."

I initially found it amusing that Dr. Zemel is asking for a patient to educate him on the use of alternative treatment. But then I got pissed off. As someone who is supposed to be upholding his own guidelines, if that patient needs antibiotics, he could be providing advice as to how to get authorization for antibiotics if they are medically necessary and/or advise further testing to substantiate her diagnosis for treatment. Instead, he is humoring her.

But in the end, the message I'm getting out of this: Alternative treatments are currently not evidence-based treatments for Lyme disease. Sure, people try them, and some may help with some symptoms - but we need more research on them.

"Daniel Cameron: ILADS published an evidence based guideline in 2004 reviewing the evidence. See our website at ILADS .org. We expect a new guideline soon. Many of our members are now publishing. The publication should help the dialogue."

I hope that you are providing more peer-reviewed-from-established-journal citations and references to support your guideline, and that we get to see it soon. I eagerly await the outcome of all this work you've been doing.

"Dr. Lawrence Zemel: The ILADS guidelines were reviewed by the British Health Agency and found to lack scientific credibility. Most major specialty organizations in North America and Europe have endorsed the IDSA guidelines."

Dr. Cameron, there's a reason why I said what I did above.

Interesting, Dr. Zemel. Could you please explain why each of these countries overseas have adopted IDSA's guidelines and not written their own, given that they have historically had somewhat different diseases and disease presentations? (This is becoming less the case with bird migration affecting infection distribution and rate.)

And then there are these differences in approach. Why is it in much of Europe doctors are trained to look for more cases of neuroborreliosis and treat them earlier on, whereas in the US they aren't? Recent evidence from EUCALB and your not-cited organizations state that the percentage of American-based Bb infected patients in Europe show a percentage of neurological symptoms equal to those found in European-based Bb infected patients. (It's in that recent Institute of Medicine report that was posted in April.)

Another patient weighs in...

[Comment From Julia Wagner]
Actually - while a dialogue will help, it is not uncommon in medicine to have multiple schools of thought that inform a physician, who can make the call that is best for that patient - the same approach should be used with Lyme - and physcians need to be educated that 2 schools of thought. Any scientist who vociferously opposes other thinking, is limited the potential for progress in medicine - we need to follow the science as it emerges, and not ignore or disparage this. The science just evolving last year was significant in explaining "chronic lyme" from the 13 subtrains genotyped by Dr. Luft with some having serious neuro sx and others a more limited easy to cure disease, to lymphadenopathy study finding spirochetes hiding in the lymphs as another means to evade the immune system. I so no reason why the IDSA should fight other points of view - physicians should be informed about emerging science period, and treat their patients to get them well. Chalking up all remaining symptons to "aches and pains of daily living" is not acceptable when other viable options have not been explored."

I've bolded what I particularly would want to emphasize of your good points - thank you for contributing to this discussion. We need more people to ask questions referring to the science related to Lyme disease.

PS Julia: Please have someone proofread your question or type it into Word or some other text editor to run it through spell check first. I know you didn't mean to post typos, but it makes it harder to read.

---

So after this, Milton asked questions about vaccines, but they went unanswered as the chat was shut down at 1 pm EST.

This is all I have to say on this for now.

What are your thoughts about it?

Refer to the original chat transcript here:
http://www.courant.com/health/mc-health-chat-lyme-disease,0,4675217.htmlstory

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