Wednesday, November 7, 2012

0 Rant: Can The IDSA Meet Lyme Disease Patients Halfway?

A background story for this rant is in order: The following is a rant from Lymenet Europe in response to one member's comment that I blame the IDSA for dysfunction when it comes to the quality of communications between the IDSA and patients and advocates, and don't place enough responsibility for that dysfunction on patients and advocates instead.

I disagree with this assertion. I'm not looking at blame. I'm looking at accountability. And I think both "sides" of this conflict are responsible for letting things get to the point where they are now.

All I know as a patient is that I'm looking at over twenty years of the conflict over causation for my persisting symptoms and even if that's not resolved to the degree that everyone would like - I want greater acknowledgement of my condition by the IDSA and medical community as a whole.

I'm not looking for a sign that the IDSA will change everything they do to fulfill all chronic Lyme disease patients' wishes. That isn't what this is about and I don't think it's something that is realistically achievable at this point in time.

This is about moving beyond awareness to acknowledgement that people with persisting symptoms can have a range of severity in their symptoms and be affected by them anywhere from minimally to profoundly.

This is about being taken seriously, regardless of what causes my persisting symptoms after having contracted Lyme disease. This is about having the medical community as a whole not write off symptoms as being psychosomatic in nature. This is, in a nutshell, about respect...

Camp Other wrote:

"My issue is with the quality of interactions they have had with advocacy groups and patients, and their inability to provide education, outreach, support,and research that helps those of us with persisting symptoms."

Bagge wrote:

"It seems you are blaming them for the dysfunction, and not placing adequate responsibility onto the activists. I'll leave it at that. It would be an inappropriate use of this forum for me to comment further as to my opinion on activist antics and the degree to which their specific actions are directly endangering and exploiting patients. If I had the means, I'd write a Lancet article about it so as to warn the public about the dangers."

Camp Other wrote:

Bagge, I'm not blaming anyone. I am venting my frustration to some degree, and it is not about any one "side". It's about the situation and how this conflict over causation has gone on for a long time now.

When I hear you discuss chronic Lyme disease, your focus is very much on pseudoscience. And doctors who you want to condemn for their actions, whether its unfounded treatments or egregious behavior. But I hear very little from you on how best to serve the needs of patients suffering with persisting symptoms after contracting Lyme disease. So after you have warned the public to the degree that you find necessary and make the parties accountable that you think should be accountable, what's next?

I don't know who, ultimately, could be responsible for creating what I'd call d├ętente, but it would be refreshing to see. I think one sign of it was when patients protested the IDSA conference in San Diego and instead of getting called hypochondriacs and crazy, some conference participants came up to them and asked them questions about why they were there. Polite exchanges, and no one got their head ripped off from what I've heard.

Not all activists and patients are frothing at the mouth and posting conspiracy theories daily and harassing the IDSA and its doctors. We might be angry, but we have reasons to be and I think it's reasonable to request that those reasons be addressed and that there be a dialog between Lyme disease patients and the medical community, including the IDSA.

It used to be that Lyme disease patients were welcome at conferences where different infectious disease specialists would discuss their research on Lyme disease and patients could ask them questions - but that changed. I had read somewhere at some point that this practice stopped some time in the 1990's when some researchers wanted to discuss the issue of persistent infection and their papers were rejected for presentation - but later were accepted after some amount of pressure on the IDSA from patients and support groups. The full story on what happened is not clear to me, though, and I think the only online accounting of it I read has been removed (The old LDF site? Not certain.).

I think some essential rift in the social fabric may have been torn there, if that's what happened. I would like to hear someone else's story on how the "sides" unfolded. I don't know how many people know what happened and which key events took place that led to the development of "sides". I don't know the whole story myself.

I wonder why Chronic Lyme Disease is different, because when it comes to other illnesses including rare and hard to treat ones, in a number of cases patients have closer relationships to those researchers and clinical doctors who are working on their disease. In Lyme, we don't have that relationship in a number of ways - though we do have researchers like Dr. Luft and Dr. Norris who will attend Columbia Lyme disease conferences and present their research which is very much appreciated by me. But it's not a broader scope conference such as the IOM workshop held in 2010. That was a rare, one time event.

But getting back to this part of what I said: "inability to provide education, outreach, support, and research that helps those of us with persisting symptoms."

I guess my thoughts on that when I wrote it is that I don't have the kind of relationship as a patient with different scientific institutions that, say, some patients for other conditions have with researchers at the NIH-NIAID for theirs. And I see that, while as a patient I can be affiliated with Lyme disease advocacy organizations and groups such as the Lyme Research Alliance or a member of my local Lyme disease patient support group where we share tips and discuss the major impact being ill has had on our lives - there isn't really this sense of being a person with my condition which is integrated into the mainstream medical model somehow...

Basically, either I get my support and have a voice with Lyme disease advocacy groups and other patients - or I don't get it. And this is true for a lot of patients. We have each other, but we don't have the back of the mainstream medical community the way that someone with, say, cancer has or someone with Chagas disease. These are recognized conditions which are complicated and not well understood, have a major impact on people, and family doctors try to work with patients with these conditions.

But say you have chronic Lyme disease, and because there is no acceptance of this condition from much of the mainstream, you get looked at oddly because doctors have read from the IDSA and other institutions that it doesn't exist... Yet, just the same, I am not well, and not at my pre-infection baseline for health, and if there IS permanent damage due to having been infected, then that needs to be taken into consideration and worked with as a doctor.

Problem is, it isn't by most doctors. I'm probably lucky I have one doctor who is willing to consider that having a history of Lyme disease infection may have affected my health in a number of ways. Not everyone is that lucky.

Because patients in my situation do not have the back of much of the mainstream medical community, we are isolated and turn to our support groups, advocacy orgs, and LLMDs for support and validation. And why go somewhere else where people don't take you seriously? You don't. You stay as far away from it as you can.

As a patient, the only other choice that you have is to totally back away from support groups, advocacy orgs, and LLMDs and avoid all doctors and basically try to manage life on your own the best you can. And either choice is isolating, in its own way.

And let's look what is happening from the perspective of a patient:

On the one hand, the IDSA guidelines which are supposed to be used by doctors to guide them in treatment state that there is no entity called chronic Lyme disease but that some patients have post treatment symptoms which are described as "the aches and pains of daily living" (which is considered minor, one-can-live-with-it pain) when, on the other hand, the Klempner study discusses patients enrolled who at their most severe are as disabled as someone with congestive heart failure.

When looking at that description, those who are the most disabled after contracting Lyme disease and have persisting symptoms after initial treatment are going to be upset, because that statement in the guidelines minimizes their pain. It doesn't even begin to describe the degree of dysfunction some of them are experiencing. It sure as hell would not have described my symptoms in the two years after infection began, and at times, it would not describe my symptoms now.

So to patients, it's minimizing, and gives all doctors relying on those guidelines the idea that our problems can be shrugged off and we can function with them. A lot of us can't function (or at least do not function very well), though, so I think that if the IDSA and other medical organizations would state in a professional manner in the next guidelines review that there is a range of symptom severity after initial treatment in those patients who do not completely recover that would at least reduce some of the anger.

"The aches and pains of daily living" phrase has to go, regardless of whatever problems were found in the population at large over time. That kind of comparison is like saying "let's compare one sick person to another sick person". It's not useful, and from a scientific perspective, it is more accurate to describe the patients' symptoms in terms of how they are limiting mobility and functionality and quality of life measures, so why not do that instead? That would more accurately characterize our problems without being dismissive.

I am aware that the IDSA is, in all likelihood not going to change their guidelines to designate longer term antibiotic treatment courses as Lyme disease patients and advocacy groups would like to see them do. That is unlikely to happen unless certain postulates of Koch's are met regarding Borrelia burgdorferi. But in the meantime, can't something be done to at least acknowledge the range of severity of symptoms and QOL issues patients have? Can any kind of suggested safe and effective treatment be included (one reason I wished something like Low Dose Naltrexone could be studied would be to include it here) that helps patients? There is, at present, NOTHING.

And then there's the issue of family doctors and urgent care doctors not even knowing how to treat EARLY ACUTE Lyme disease. Before we even get to the issue of whether or not Lyme disease can be a persistent infection, it seems so many patients have had an encounter with a doctor who didn't even know how to properly apply existing IDSA guidelines to patients.

Patients go to family doctors and urgent care doctors FIRST, not an infectious disease doctor, and not usually an LLMD, either. Some patients see a doctor for a tickbite and have no insurance, and could not afford to see either an infectious disease specialist or an LLMD, when it comes down to it.

And there are many, many stories of patients seeing family doctors or urgent care doctors where they either they misdiagnose the rash, or they test too early so the patient's test is predictably negative,or they see a rash but wait for test results weeks later to go ahead with treatment, or they do not consider coinfections in the percentage who do get them. That's just a few examples. And then they get disseminated infection later - if not late stage - when it's more difficult to effectively treat the infection.

Based on experiences like these, from the patients' perspective, a certain percentage of us have lost some faith in a lot of doctors and would rather turn our health care over to LLMDs and alternative practitioners. We feel the system failed us, and if our symptoms are serious, then the system seriously failed us. That's how it is.

If the IDSA wanted to make life better for everyone, is there anything they could do to ensure doctors had more training to make early clinical diagnoses of Lyme disease and other tickborne infections? Maybe they are already doing this training, but a refresher is needed from time to time. From what I know about med school, tickborne illnesses are covered very quickly and not in great depth. There is a LOT to learn and remember.

I can't help but think that there has to be some way to avoid becoming another member of the controversial disease club I'm in and to avoid paying its horrible annual dues. I keep thinking my situation could have been prevented if more family doctors and urgent care doctors were better trained to handle acute cases of tickborne diseases. So if the IDSA did more such training, put educational posters on clinic walls as reminders, and let patients know that they were working on improving diagnosis and treatment in the typical clinical scenario and not one where you have more specialized tests and tools to use as an academic physician, then some patients might be less angry at the IDSA and say, "Thank you for doing this". They might also add, "Why didn't you do it sooner?", but that's how it goes.

By and large, the IDSA could do more to at least explain where they are coming from by creating an informative web site explaining what research they are doing, how they have come to the conclusion that even if they do not have enough evidence to support that patients have a persisting infection after initial treatment - they do have some evidence that supports an autoimmune hypothesis, and allow some method of allowing patients to ask questions online about this hypothesis. Put it all in one place. And also: educate medical professionals and society about the range of severity of symptoms in patients with persisting symptoms. Take the condition seriously, even if patient advocates and the IDSA disagree as to the cause of those symptoms.

It is probably not going to be a site that all Lyme patients will use, but it would make it clear what the IDSA's viewpoint is without anyone else misinterpreting their view. The IDSA could expect to see some very vocal detractors because of the controversy. At the same time, it could be informative if patients were given a chance to air their complaints and also ask questions so the IDSA knows what is on their minds. Just like this board - as contentious as it can get - there can be rules about threats and harassment in response to articles posted and those who violate them can be removed.

I get the impression, though, that part of the problem is that when it comes to the "sides", no one wants to change anything because it would be viewed as a concession, and would become a slippery slope.

I don't think it has to be that way, though, because in my opinion, there is a reasonable middle ground which could be found which offers patients more acknowledgment for the serious nature of their condition and support without labeling based on its cause on one side - and on the other, opens the floor to some dialog from patients who are not going to be hostile to the IDSA on the other.

But when you're looking at over twenty years of Lyme disease patient history, from the perspective of many patients and advocacy groups, they have lost trust and faith in IDSA. These changes would help, I think, in lowering the volume of anger that is out there - but it would not remove it.

There is a lot of anger. A lot of frustration. I share in it, and yet, I'm not always certain where my anger is directed. It changes:

Am I angry at my ex-family doctor who misdiagnosed me and did not treat me? Yes. Am I angry that the current guidelines seem to minimize my experience and discount my condition, and don't even recognize their alternative, PLDS, as a legitimate diagnosis, for those who have developed some autoimmune disorder? Yes. Am I angry that this makes it harder for patients to file for disability with a diagnosis like chronic Lyme disease? Yes. Am I angry that IV antibiotic treatment would not be covered by insurance even when I only wanted to try it for no more than one month? Yes. Am I angry that mainstream doctors in the ER have dismissed my medical history in making medical decisions about my care? Yes. Am I angry that a few ER doctors have labeled my condition somatic when they have never seen my entire medical record? Yes. Am I angry that, while I have had a lot of antibiotics and they have helped, now they do not seem to help with my remaining symptoms? Yes. Am I angry that there isn't a new treatment that is proven to help with remaining symptoms? Yes. Am I angry I haven't been able to work in years and have lost income and more medical debt? Yes. And it goes on.

So as a patient, I have a number of things to be angry about, and my anger is probably best described at being aimed at a lack of societal support and acknowledgment for this condition, as well as lack of the same from the medical profession, and anger that more research hasn't been done that puts an end to the controversy and/or comes up with a treatment that works well enough that I can work again and can live with it.

There are a number of patients who feel as I do and are in the same situation I find myself in. We might periodically try antibiotics again or herbs and acupuncture, just to see if it makes a difference. And we know that in the future research might find an answer for us...

But in the meantime...In the meantime, what can we do to make life better?

If both "sides" of this debate could engage the medical community at large in answering that question, and have compassion for patients and recognize we do have nerve damage, musculoskeletal pain, and moderate to severe fatigue (for example) due to having had Lyme disease - rather than labeling us with some psychosomatic problem - it would be a meaningful step.

And if the controversy between the "sides" will not end, I've always thought a third party could be established. On my own site I've advocated for a middle ground, a third independent party to somehow step outside the struggle and just say, "This is how it is. This is what we know about Borrelia. This is what we don't know about Borrelia. Any questions?" and let someone who is not invested in the struggle financially or ideologically become a source of reliable information from what would be viewed as a neutral platform.

But in the meantime, the "sides" is what I have to live with.

What do you think would have to happen to better meet the needs of patients, Bagge, now that I've outlined what makes me angry?

Imagine you are a patient, living with daily pain and dysfunction, and you haven't been able to work since you became ill with persisting symptoms after contracting Lyme disease? What would you do, and what would your expectations be of the medical community and society in response to your condition?

Edited to include:

I just received information about this call to action ILADS is making for patients to comment asap on the US Health & Human Services Department Healthy People 2020 campaign.

Link here: ILADS Healthy People 2020 Campaign

It's something I can support, and I wish that this announcement had been made sooner as the deadline is today, November 7.

The overall announcement is as follows:

"ILADS has submitted four objectives addressing chronic manifestations of Lyme disease to the U.S. Department of Health and Human Services (HHS) for inclusion in their Healthy People 2020. Healthy People 2020 is an ambitious, yet achievable, 10-year agenda that could improve the Nation’s health for individuals with Lyme disease. It is important that your voice be heard.

ILADS Lyme Disease Objectives:

1. Increase the proportion of persons with acute disease who are timely and accurately diagnosed.

2. Decrease the proportion of persons with chronic manifestations of Lyme disease.

3. Increase the proportion of persons with chronic manifestations of LD who are timely and accurately diagnosed.

4. Reduce the number of persons with a history of Lyme disease with subjective symptoms severe enough to result in a substantial reduction in previous levels of occupational, educational, social, or personal activities."

These all sound like reasonable goals. Goals everyone can back, no matter what causes my symptoms.


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