Between May and September, the newspapers are full of individual patient stories about their experiences with Lyme disease. So many so, that on any given week if I google "news" and "lyme disease" and select the past week for articles, I'm bound to see several from across the continental United States.
There are so many individual stories at this point that I could make a blog out of them in and of themselves. I don't, though, because there are just too many of them, and I would have less time to write about other Lyme disease and tickborne infection topical posts.
And after a while, the sad truth is that so many of these stories begin to sound very much like the first one I read. It's overwhelming. It's sad. I can't write about everyone's sad stories every day, though they do need to be heard.
Mainly, what I want to do is point out some comments or specific kinds of comments on this article - and provide both general commentary and a little constructive feedback on why they are not helpful in gaining support for more people to take this condition seriously - let alone gaining support for more research into chronic Lyme disease.
But even then, I am eventually going to tire of this because the comments begin to look the same the more one reads these kinds of news articles. The authors' names will change, their professions will change, and there will be pro-this and anti-that, and still... same content in the comments.
We need change.
Comments and questions on paraphrased random comments:
"If you researched this illness and talked to patients who were intelligent healthy people with no history of hypochondria before a CL diagnosis you would maybe reconsider your stance."
I agree this is a good point to make. Thank you, whoever you are.
"Chronic lyme has been proved already,"
If it has, then why is there still a controversy?
"but you probably think you know so much you don't need to keep up with the latest research."
Now that is a dig at the doctor... How do you know what a specific doctor knows or doesn't know? And to which "latest research" are you referring?
"Lyme disease can hide in cyst form just as Syphilis and can patients can relapse..it is the same type of spirochete."
Researchers are still debating over the cyst form - it does exist, but they debate about its significance in the infection process. And while Syphilis and Borrelia burgdorferi are both spirochetes, they are genetically different and have different strategies for hiding from the immune system. In fact, I'd have to say that Borrelia burgdorferi's strategies are far more complex than Syphilis' strategies for hiding.
"Lyme disease is kept alive by bio- films that it produces"
Dr. Sapi is the only researcher I know who has even mentioned Lyme Borrelia as having a biofilm, and she uses the term "biofilm-like" colonies. There has to be a confirmation of her research and consensus about biofilms in Bb before this statement can be used without argument.
"Not to mention the fact that it can live intracellularly"
We need more in vivo research to support this statement. I definitely have read the research and most of it is vitro. Yes, Borrelia burgdorferi can be intracellular, but for how long, and is this how it evades antibiotics and the immune system? I think that this is a possibility; it needs further study.
It does do some pretty wild things to evade the immune system to begin with.
"and it has over 23 plastics that make it the Stealthiest bacteria known."
23 plastics...23 PLASTICS? What, is the bacteria holding a Tupperware® party in the Bat cave?
Plastics... plastics... Oh, did you mean plasmids? I think that is precisely what you meant to state.
"Let's give you a tick bite _______________."
There is often at least one response like this on any Lyme disease related article I have read. I understand the anger and frustration. I have been really sick, too. Unfortunately, such statements do nothing more than put other people on the defensive - it does not earn one support or sympathy.
"the test are not reliable as we all know because there are over 300 strains."
The tests are definitely not that reliable in early infection, and they won't catch all Borrelia strains which can cause infection - especially relapsing fever type Borrelia infections. However, it's actually not that important for them to catch over 300 strains - it's only important for the tests to catch those which are pathogenic or disease causing.
Not all Borrelia causes infection. Some Borrelia causes only a rash. Some of it doesn't seem to cause any illness at all. Some of it leads to very severe illness. It would be better if tests were actually better designed so you could know exactly which strain you had.
"Someone also mentioned how the CDC requires so many strands to be positive, but what they didn't mention is the most sensitive strand isn't counted even though it was the strand the CDC used to make a vaccine."
Bands 31 and 34 are not used in current tests, having been removed after the Dearborn conference. They were removed on two counts as far as I can tell: One is that there was concern those people who had been vaccinated would skew the test results and two is that both the 31 kDa and 34 kDa bands tend to very rarely show up in early infection and mostly show up in late infection.
I don't agree with their removal, by the way, and think this removal discriminates against patients with later stage infection.
The CDC did not make the vaccine. LYMErix was made by Smith Kline Beecham Biologicals and the FDA had to approve it.
"Lyme disease is kept alive by Nematodes that have been bio-engineered to by the govt."
What? Where did you get this idea? Do you have evidence to back this statement, because this is going to stretch many readers' sense of credulity?
"I hate to go for the conspiracy element..."
"this so called debate is nothing new... it's been going on for a very long time."
This is absolutely true.
"As a doctor, do you really want insurance companies looking over your shoulder every time you prescribe something off-label?"
This is a really good question.
"Lyme Disease [...] presents itself as a great imitator of other diseases and compounded with a variety of co-infections."
This is also true. Its symptoms can often get confused with other conditions and coinfections can make it harder to diagnose patients.
"...curing will take time and research so lets get to that. But killing ticks and preventing the disease needs to be a priority now!"
Killing the ticks is no small job - I'd rather make them unable to support Lyme disease. Read Dr. Daniel Sonenshine's research on tick hemolymph.
I think it's good for everyone to engage in preventing Lyme disease, but there is only so much you can do and eventually even with all precautions taken, ticks bite people and infect them. The focus in research needs to not only go into treating those with persisting symptoms - but those who are newly infected with coinfections.
"I'm not a journalist so I didn't back up my facts, but you should."
Actually, the case for chronic Lyme would be stronger if everyone did back up their facts.
This is part of the problem. People say all kinds of things, then journalists look them up, then see there is nothing to back them or they didn't get their facts straight or exaggerated their statements in order to try to make their point stronger. Journalists see this as a way to undermine others' credibility and use that in their own commentary.
"More research is needed!"
"With horses they are now treating with IV and long term antibiotics and it does work, though reinfection is easy once the animal (and person I would guess) has been infected."
This is an interesting comment. Something CO should look into some more...
Ah, interesting exchange here:
Person A: "the studies and cases show that most Lyme patients DO get better with longer-term antibiotics."
Person B: "please supply your references for these statements."
Good, good. Please ask for references. Thank you.
"What do doctors think a chronic Lyme patient should do to help themselves? Try different antibiotics or sit back and do nothing but get sicker and sicker?"
Very good question.
"...regardless of whether long term antibiotics help or not; which I believe they do, let's stop acting like this isn't a chronic problem and find a cure."
And it's like this, too: If only a small percentage of us who are infected with Lyme disease get persisting symptoms, surely the funding can be found to focus on research for us? And to try something different - combination antibiotic trials, new antibiotics, and other innovative treatments - would be SO welcome.
"Are you [fill in the blank with IDSA supporter name]? Wow, you sure sound exactly like him."
Another kind of comment which is unlikely to help.
This comment was made in response to someone who asked for studies supporting the use of long term antibiotics. There was no name calling and insults given - just a request for more evidence to support their position.
Look, when someone asks you to produce research and evidence to back your statements, the optimal response is not to accuse the person of being someone else. Why not just provide them with links to research and titles of papers and let them do their own reading? Even if they don't accept your position, MANY other people who read your comment who knew nothing about the research before now WILL.
Edit: I just found a new set of comments that are worth commenting on...
"DGB have also noted there objections to the IDSA guidelines and have developed guidelines similar to that of ILADS, which they feel more appropriate to address the complexities of the disease.http://www.borreliose-gesellschaft.de/Texte/guidelines.pdf"
Interesting. I've read these guidelines, and wondered about Borreliose-gesellschaft. Surprised to see someone post about it on a US web site.
"The core values of IDSA include, advocating for sound and humane public policy and promoting and sharing knowledge to reduce human and societal toll from infectious diseases . In the case of IDSA Lyme disease guidelines, reducing the human toll and suffering of those with Lyme disease seem to be the last thing on the agenda."
This is a very good point. The IDSA should be upholding their core values for all patients. If a certain subpopulation of us has post-treatment Lyme disease symptoms, we deserve to be treated humanely and the toll on us alleviated if not entirely removed.
I don't expect answers overnight, but this controversy is two generations old and I would like the deflection to stop: Statements such as "most of those infected with chronic Lyme disease did not even have Lyme disease in the first place" are not helpful to those of us who have had Lyme disease and other tickborne infections - along with any statements about only a small percentage of patients having persisting symptoms. Those of us who have been infected with it and greatly affected by it need research and effective shorter term treatment.
"The removal of 31 and 34 as significant bands for Lyme disease testing was so that there could be a distinction made between those that had been vaccinated and those that had not. If Lyme disease was defined as chronic – the clinical trials required for any possible vaccine would be enormous."
There are a number of issues involved with removing those bands from the test. A few people do test positive with them in early infection (though more so in late stage infection) who would not be counted as infected today under the CDC surveillance criteria. However, doctors should not be diagnosing patients using the surveillance criteria - Lyme disease is a clinical diagnosis.
The issues around vaccine development is a complicated one and deserves an entry all its own.
"The guideline authors and their associated universities have received the majority of the funding with regards to studying Lyme disease, to quote Willy Burgdorfer “The controversy in Lyme disease is a shameful affair because the whole thing is politically tainted, money goes to people that have for the past 30 years produced the same thing – Nothing”
Hey, this Burgdorfer quote is one of my rotating quotes on the CO home page.
I know the guideline authors have received a lot of money for research on Lyme disease - did they receive the majority? I need to confirm that. I know a lot of universities are doing Lyme disease research these days and some of the faculty have worked with members of the guidelines panel, but I thought the vast majority are either not involved with guideline development or do not stand to profit much - if any - from the work that panelists have done.
"As a Norwegian study just noted: "Designating such patients as having ‘post-Lyme disease syndrome’ (PLDS) incorrectly suggests a prior knowledge that the disease has been cured (‘post’ meaning after), before reasonable attempts have been made to rule out relapse or persistent infection. Whereas persistent infection may be highly unlikely in many patients, using deceitful terminology hampers a scientific and evidence-based approach. For this reason, the Dutch CBO 2011 Guidelines Committee has recommended not to use the term PLDS." B.J. Kullberg, A. Berende, J.W.M. van der Meer, The challenge of Lyme disease: tired of the Lyme wars, The Journal of Medicine, Netherlands, Vol 69. March 2011."
This is a very good point.
And this one reason why I am not sitting here supporting the autoimmune hypothesis - outside of the fact that I was infected with Lyme disease, have persisting symptoms, and antibiotics have helped: It's a hypothesis. Even if one says it's their leading hypothesis, it has yet to be a proven theory which is arrived at after repeated experimentation with consistent results and no competing hypothesis and cause which counters it.
"There have been many treatment failures – As Dr. Halperin (IDSA) wrote in Neurology in 1992 ((42):43-50), "In many instances continued infection appears to be essential for symptoms to persist, no matter how small the number of organisms, as antimicrobial therapy is generally followed by clinical improvement."
Has Halperin changed his mind about this, and if so, when and why?
"Or as Drs. Dattwyler and John Halperin (both of IDSA) described in the New England Journal of Medicine in 1998 (319(22): 1441-6), We studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed."
As I understand it, yes, they did write this back then, but they began to change their mind - at least their public statements today dismiss Lyme disease as a persisting infection when they used to use that phrase, "chronic Lyme disease" in their research all the time and meant it to mean persisting infection.
What evidence did they have to support this change of position?
"Gerold Stanek (also of IDSA) put it in the British Journal of Dermatology in 2001, "The relapses she repeatedly suffered despite initially successful antibiotic treatment could be related to the observation that Borrelia may possibly be able to remain dormant in certain tissue compartments, thus escaping bactericidal antibiotic activity" (144(2):387-392)."
Well, in animal studies, that's usually where remaining spirochetes are found after antibiotic treatment. Ask Barthold... they don't have to be in the cyst form to be there.
"Whilst you point to “The Day” article – which was more of a political attack (rather than coverage of Lyme disease) on Senator Richard Blumenthal..."
Points for you, sir or madam! Tip of the hat to you.
"Recently two bills were introduced: On July 15th 2011 Congressman Christopher Smith (R-NJ) and four cosponsors introduced bill HR-2557: To provide for the establishment of the Tick-Borne Diseases Advisory Committee (22). On July 18th Senator Richard Blumenthal (D-CT) announced the introduction of Bill S1381: Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2011 to combat the growing epidemic of Lyme disease across the country."
I wish I could be more excited about these bills. I have seen many bills come and go. What I want to see isn't money for a committee - I want to see money that goes directly into research specifically for chronic Lyme disease patients. Research on different treatments and on what sets us apart from those who are acutely infected and recover, and research on the specific pathogens which coinfect us.
"Currently they are awaiting legislation, and no doubt IDSA will send letters opposing them as they have done with other such bills previously put forward (24)."
Where did you copy this from? I just noticed all the numbers... Why would the IDSA oppose a bill on prevention, education, and research on tickborne diseases? That doesn't make sense to me... I do predict that any bill which protects doctors who treat Lyme disease patients with longer courses of antibiotics will result in the IDSA sending letters opposing it.
"Lyme disease patients and advocates can only but hope that there passing will eventually allow a much broader knowledge and awareness of Lyme disease to be established."
I've had plenty of hope. Miles and miles of it. Action and change would be much better.
"There are thousands suffering – and people really need to start reading the science – not just look at the authors of the paper…. who better still - look at what the IDSA guidelines authors wrote pre 1995 and the beginning of vaccine trials...."
I agree. And I agree. And, oh... I agree.
I also think that if you can think clearly enough even though you are sick and in pain, that learning as much as you can does help and prepares you to be a better educated advocate. Learn and educate yourself about Borrelia burgdorferi and bacteria in general - study microbiology, immunology, and a little bit of genetics. Read college textbooks, take them out from the library, take cheap community college classes on or offline... Just dive in and start somewhere, with the motivation behind it to learn more about the science of Lyme disease.
It isn't going to happen overnight, even in the best of health. But in poor health, at home and in pain, it's a noteworthy way to spend your time when you are too ill to go anywhere. At the end of this ordeal - hopefully when you're better - you may find yourself in a new career for all you know, and go on to help others. If not, you'll be able to write and know what you're talking about.
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