Tuesday, June 28, 2011

19 Commentary: A Letter From The CDC To Lyme Patients

I came across this letter online. Presumably, it was a letter in response to a letter from a patient with Lyme disease/Post Lyme Syndrome sent to the CDC - but there is no identifying information on the email, and I do not have any verification of its origin.

However, I want to post it along with a few comments, taking it at face value that it is what it appears to be and is real.

I have some questions to ask on the content as well as some criticisms about it. If this were an actual letter I had received from the CDC, I would have been disappointed by it.



-----Original Message----- From: NCID/VBI BZB Public Inquiries (CDC)
Sent: Tuesday, February 01, 2011 3:18 PM
To: XXXXXXXXX
Subject: RE: Lyme disease inquiry

Hello,

Your inquiry was forwarded to CDC's Division of Vector-Borne Diseases. We are sorry to hear of your health issues. Please be assured that CDC is constantly reviewing the scientific literature and makes recommendations according the quality of the scientific evidence. At this juncture, the risk of extended antibiotic treatment well outweighs any perceived benefits. As a public health agency, we are concerned not just about those with true Lyme disease, but also the multitudes of people being misdiagnosed with Lyme disease and treated for a disease that is not the cause of their symptoms.

Many of the statements that you make in your email are not accurate, and are examples of the type of misinformation that is spread through the internet and many advocacy groups regarding Lyme disease. In fact, if someone is not diagnosed until later stages of illness, IV antibiotics are recommended (not oral). That may not have been the case back then, but scientific evidence has demonstrated that to be the case. Unfortunately, there are a small number of people, who receive appropriate treatment, still continue to have symptoms. The cause of this is unknown, but there has been no evidence to support the idea that these people are still actively infected. There is a lot of current research on this front, and the leading hypothesis at this time is that it is an autoimmune response (this is not that unusual in infectious diseases). The mainstream medical community has searched for the cause for these symptoms, and there have been 4 placebo controlled clinical trials to assess whether continued antibiotic treatment was helpful for these patients. No long lasting improvement was shown over placebo. Anecdotes of recovery with nonstandard treatments are shared widely, but you can't base scientific recommendations on anecdotes. It is incumbent upon the proponents of continued and nonstandard treatment for Lyme disease to do the research needed to demonstrate the position that they so strongly believe in. In the meantime, there are many doctors and laboratories that operate a "for profit" business diagnosing anyone with Lyme disease. The reason some clinicians have been brought up on disciplinary charges is not because they operate outside the mainstream, it is because patients have suffered dire consequences from their experimental treatments, and some have even died.

Sincerely,

Centers for Disease Control and Prevention
Division of Vector-Borne Diseases
Bacterial Diseases Branch
Fort Collins, Colorado
email:dvbid@cdc.gov



My first comment on this is that I wish it were posted alongside the original emailed letter which was sent to the CDC so I could see which statements were made which may have been considered inaccurate - and I would have liked to have seen further detailed response from the CDC officer who would have fielded these statements and responded.

My second comment is that while it is good that the officer showed sympathy for the original letter writer's poor health, what follows is not in any way supportive or helpful to the person who has been suffering from persisting symptoms related to Lyme disease - regardless of what anyone thinks the cause is.

Beyond this, I'm going to comment on parts of this letter piece by piece.

"Please be assured that CDC is constantly reviewing the scientific literature and makes recommendations according the quality of the scientific evidence."

It would be helpful if the CDC set aside a web site with links to all the scientific literature they think is supportive of their approach to Lyme disease - as well as a ranking of the quality of the evidence supplied (how much of it is opinion-based, how much is based on case studies, how much is based on random controlled double blind studies, etc.).

"At this juncture, the risk of extended antibiotic treatment well outweighs any perceived benefits."

It would be helpful if the respondent clarified what this juncture is - I can only guess context from the content in the rest of the letter. While I'm fairly certain this is a response to a question about long term antibiotic treatment for Lyme disease, I'm not sure which specific juncture the writer is talking about in terms of timeline or symptoms.

But right now, my first question without any context is this: What happens when a patient has treatment failure?

How does the risk of extended antibiotic treatment for Lyme disease compare against extended antibiotic treatment for other conditions such as acne, ulcerative colitis, reactive arthritis, Hansen's disease, and tuberculosis?

How do the benefits of extended antibiotic treatment for Lyme disease compare against extended antibiotic treatment for other conditions?

"As a public health agency, we are concerned not just about those with true Lyme disease, but also the multitudes of people being misdiagnosed with Lyme disease and treated for a disease that is not the cause of their symptoms."


Why do they assume that so many people are being misdiagnosed with Lyme disease - versus there are a lot more cases of Lyme disease that are being diagnosed?

On the whole, it seems this statement is focused more on "the multitudes of people being misdiagnosed with Lyme disease and treated for a disease that is not the cause of their symptoms" rather than those with a history of true Lyme disease. This becomes more apparent by reading the rest of the letter.

The assumption being stated here is that multitudes of people are being misdiagnosed with Lyme disease and treated for a disease that is not the cause of their symptoms.

What evidence do they have that this is true?

Why do they assume that so many people are being misdiagnosed with Lyme disease - versus there are a lot more cases of Lyme disease that are being diagnosed?

Every year the general trend has been an increase of official reported and probable cases reported by doctors and state health departments to the CDC.

The CDC itself knows this and acknowledges that in highly endemic areas the number of actual Lyme disease cases is 6-12 times higher than those which are reported, where are these multitudes of which they speak which are misdiagnosed?

"In fact, if someone is not diagnosed until later stages of illness, IV antibiotics are recommended (not oral). That may not have been the case back then, but scientific evidence has demonstrated that to be the case."

This is true to a degree.

Refer to the 2006 Lyme panel guidelines and you will see that use of IV antibiotics only applies to late (and early) neurological Lyme disease cases and not in the case of Lyme arthritis and other Lyme disease manifestations.

Addendum Aug. 28, 2011: Dr. Allen Steere is recommending an additional month of IV antibiotics for patients with chronic Lyme arthritis if the first two months of oral antibiotics are insufficient. (How is this determination made?)
"Unfortunately, there are a small number of people, who receive appropriate treatment, still continue to have symptoms."
Hey, this is me.

At least I think so?

I did receive a standard amount of appropriate treatment at first, but it was not the first line antibiotic choice due to allergies. Could that be the cause of treatment failure in me?

What happens if I have had neuroborreliosis and it wasn't diagnosed all this time? I never received any IV antibiotics for Lyme disease. So in that case, according to the CDC I would not have had appropriate treatment until I have had IV antibiotics for a month.

By their definition, was I treated properly?

"The cause of this is unknown, but there has been no evidence to support the idea that these people are still actively infected. There is a lot of current research on this front, and the leading hypothesis at this time is that it is an autoimmune response (this is not that unusual in infectious diseases)."

Why do they state there is no evidence to support the idea that some patients are still actively infected after standard treatment with antibiotics?

I wish the CDC officer who responded would have stated why the evidence of persistent infection in human and animal studies is considered scientifically unacceptable to the CDC. It would be informative to hear their perspective on this research.

The author says the cause of persistent symptoms is unknown - but then later goes on to state that the leading hypothesis at this time is that it is an autoimmune response.

To which I have to ask:

What is the evidence in favor of an autoimmune response, especially within 30 days after initial infection? Why does this hypothesis have greater weight than other hypotheses?

If some patients  develop an autoimmune disorder after contracting Lyme disease - does that eliminate the possibility that some portion of the patient population which has been diagnosed and treated for Lyme disease may have treatment failures and need additional or different antibiotics - or need to switch from oral to IV form?

Is this patient population going to be so uniformly homogenous in outcome that every patient who continues to have symptoms after 21 days of oral antibiotic treatment has an autoimmune disorder?

How quickly does an autoimmune disorder develop and what are the necessary conditions for its development?

This is requires evidence. Right now it's a hypothesis, and even if it's the leading hypothesis - it can still be wrong or not apply to all patients.

"The mainstream medical community has searched for the cause for these symptoms, and there have been 4 placebo controlled clinical trials to assess whether continued antibiotic treatment was helpful for these patients. No long lasting improvement was shown over placebo."

Three different statements are packed into this one.

1) The mainstream medical community has searched for the cause of these symptoms.

and

2) There have been 4 placebo controlled clinical trials to assess whether continued antibiotic treatment was helpful for these patients.

and

3) No long lasting improvement was shown over placebo.

In response to #1, my questions are: What does the CDC mean by "the mainstream medical community" in this statement?

It would be helpful to name names, offer specific citations for research which has been conducted, and see what has been done - as well as mention research that is in the pipeline and currently being conducted. As a patient, I would want to know what is currently being done to help address my issues and find more effective treatment for my condition.

In response to #2, there has been much discussion in the Lyme patient community about 4 placebo controlled clinical trials as well as criticism about them. Those within the community already know which 4 trials this CDC officer is likely to be using as references. However, this should not be assumed and it would have been useful to at least specifically offer citations for these studies to confirm this fact.

In response to #3, there has been reported improvement in patients while they were on antibiotic treatment during trials and that improvement stopped after antibiotics were stopped. One must consider that the antibiotics may have some positive effect on patients, whether that is antimicrobial, anti-inflammatory, or some other effect. It deserves more investigation.

Providing evidence that a particular long-term antibiotic treatment helps alleviate symptoms is a separate issue to test than a trial which provides evidence that a patient has persistent infection.
From my point of view, providing evidence that a particular long-term antibiotic treatment helps alleviate symptoms is a separate issue to test than a trial which provides evidence that a patient has persistent infection.

Certain kinds of antibiotics work better for certain pathogens than others due to their pharmacokinetics and if Borrelia burgdorferi is at least partly intracellular and has other survival mechanisms which may make it easier to evade antibiotics, then not only does the organism's pathogenesis require closer study - but more wide scale treatment trials could be designed for late stage and chronic Lyme patients which address specific treatments in relation to research about the organism's behavior in vivo (rather than continue longer courses of the same antibiotics which are already outlined in the guidelines).


"Anecdotes of recovery with nonstandard treatments are shared widely, but you can't base scientific recommendations on anecdotes."

This is true.

However, one can look at well-documented and detailed case studies of patients and use those to develop larger scale studies and clinical trials. There are already doctors out there who have such case studies who could help develop and design these trials.

Why don't we have some additional trials, rather than beat around this obvious bush?

And why not begin conducting trials for treatments which address immune dysregulation due to Lyme disease infection?

This would help patients without using antibiotics and could prevent them from developing an autoimmune disorder.

And maybe perhaps also conduct studies and trials with a two-pronged approach that handles infection and dysregulated immune responses?

"It is incumbent upon the proponents of continued and nonstandard treatment for Lyme disease to do the research needed to demonstrate the position that they so strongly believe in."

What does this statement mean? The assumption I would make in reading this is that it is that proponents = patients suffering with persisting symptoms (of which some have found some relief using antibiotics longer term, regardless of what mechanism is at work in their use), the doctors who are willing to treat them longer term, organizations which support such patients and doctors (Lyme disease advocacy groups), and some researchers who have studied Bb and think it can persist in the host post-antibiotic treatment.

Does this mean that the CDC's expectation is that such proponents fund their own research for chronic Lyme disease (or what they'd call Post Lyme disease) rather than having other major research institutions look into the cause of persisting symptoms and treatment for patients with such symptoms?

"In the meantime, there are many doctors and laboratories that operate a "for profit" business diagnosing anyone with Lyme disease."

And?

If I would have received a letter with this statement, I would have been expecting some additional notice about which laboratories and doctors these are and what evidence they have that they diagnose anyone with Lyme disease. Instead, as a patient I am left wondering who these doctors and laboratories are and what evidence the CDC has against them.

"The reason some clinicians have been brought up on disciplinary charges is not because they operate outside the mainstream, it is because patients have suffered dire consequences from their experimental treatments, and some have even died."

Again, if I would have received a letter with this statement, I would have been expecting some additional notice about which clinicians were brought up on charges and what the evidence was for such charges. I would be concerned about the circumstances of other patients' deaths, and in general, wonder why I had received a letter from the CDC mentioning this without further qualification or details.

If the purpose of the letter was to inform me out of concern, it hasn't because it hasn't supplied such information in order to educate me about such laboratories and clinicians. It has only served to try to instill fear in me about potential unknown doctors I haven't seen and laboratories I know nothing about.

I'm already sitting here, having known I was bitten by a tick, even saved said tick, and had a textbook case of Lyme disease; I've already been tested by a certified laboratory for Lyme disease and coinfections.

I'm not "one of the multitudes who was misdiagosed with Lyme disease and treated for a disease I never had" - whoever they are.

I don't know how many people actually do fall under this category - I have no data on this, though I would like to know about the specific data the CDC has on this population. It would be most informative.

Anyway, if I had gotten this letter, I would have found it dismissive of my condition and of me as a patient - whether my condition was labeled Chronic Lyme disease, Post-Lyme disease syndrome, Post-treatment Lyme disease, or something else entirely.

I would have found it scientifically useless, as there are no citations and explanations to back the CDC officer's claims.

I would have found it medically useless, as it doesn't point me to any effective treatments and clinical trials that have just finished along with an opportunity to sign up for a current or future clinical trial or study.

I would have found it lacking in hope and denigrating, as it is blatantly telling me and others (disabled, many unable to work - not to mention broke and without microbiology labs or training) that we must somehow conduct our own research for the condition that the mainstream medical community has coined for me (either Post-Lyme disease syndrome or Chronic Lyme disease).

To top it off, I would be pissed off I'm being warned about certain labs and doctors without any more information concerning who they are and without any evidence they have done something wrong.

As a patient, all this would do would provide me with the additional work of having to do the difficult job of investigating every single doctor and laboratory out there who tests for Lyme disease - a job which no patient should be expected to do.

This is, by and large, a shitty and useless letter to receive as a patient.

In tone and purpose, it starts out with a statement of sympathy, only to move through self-informed justification for its own position and onto assumptions about the patient population - then onto trials with negative outcomes and instilling fear about unidentified doctors and laboratories.

If I were working for the CDC and had to write a letter to a Lyme disease patient (acute, late stage, chronic, or post-Lyme) - even with inherent differences in position between the official CDC/IDSA Lyme disease guidelines perspective on Lyme disease and that of the Lyme patient community - I would have done it differently.

If any CDC officer happens to see this and read this, I want them to know that if the above letter is in fact an official and genuine email that was sent to a patient by your institution, that you could have written it differently and with more compassion for the patient who receives it.

You are writing to a person who may have been entirely devastated by their illness (whatever it is) and has lost everything - their health, their marriage, their job - and they took the time to ask you for feedback and help.

If your hypothesis is so strongly supported, what research are you doing that shows support?
If your autoimmune hypothesis is so strongly supported, what research are you doing which helps those patients who are suffering from this condition?
What they need to hear about is what is right and true, high quality evidence backing such claims, and to be offered information that is helpful and supportive. They need specifics about what is being done to investigate their condition further and improve their quality of life. And they really don't need some ludicrous suggestion that they need to investigate it themselves.

It's scientists' job to educate people and light a candle in the darkness. To solve controversies. To provide a clear trail of supportive evidence for a hypothesis, and then provide high quality evidence to support that hypothesis for those who are affected by that hypothesis which provides the current foundation for patient treatment decisions.

If your hypothesis is so strongly supported, what research are you doing that shows support?

If your autoimmune hypothesis is so strongly supported, what research are you doing which helps those patients who are suffering from this condition?

Where are the positive outcomes from random double blind controlled studies?

If this is for real, I'm asking these questions for the person who wrote the original letter, whatever erroneous information may have been in it. I'm asking for other patients I don't even know. And finally, because I have some self-interest in this, I'm asking for me.

19 comments:

  1. One more question: Is it doing the right thing to base treatment guidelines on a hypothesis rather than a strongly based theory?

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  2. *****One more question: Is it doing the right thing to base treatment guidelines on a hypothesis rather than a strongly based theory?****

    Maybe they're the same thing?

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  3. cave76,

    No. Absolutely not. They are not the same thing. These are entirely different terms on a scientific level.

    See: http://chemistry.about.com/od/chemistry101/a/lawtheory.htm, though this is only one of many pages I could refer to for this:

    "Hypothesis:

    A hypothesis is an educated guess, based on observation. Usually, a hypothesis can be supported or refuted through experimentation or more observation. A hypothesis can be disproven, but not proven to be true.

    Example: If you see no difference in the cleaning ability of various laundry detergents, you might hypothesize that cleaning effectiveness is not affected by which detergent you use. You can see this hypothesis can be disproven if a stain is removed by one detergent and not another. On the other hand, you cannot prove the hypothesis. Even if you never see a difference in the cleanliness of your clothes after trying a thousand detergents, there might be one you haven't tried that could be different."

    VERSUS

    "Theory:

    A scientific theory summarizes a hypothesis or group of hypotheses that have been supported with repeated testing. A theory is valid as long as there is no evidence to dispute it. Therefore, theories can be disproven. Basically, if evidence accumulates to support a hypothesis, then the hypothesis can become accepted as a good explanation of a phenomenon. One definition of a theory is to say it's an accepted hypothesis.

    Example: It is known that on June 30, 1908 in Tunguska, Siberia, there was an explosion equivalent to the detonation of about 15 million tons of TNT. Many hypotheses have been proposed for what caused the explosion. It is theorized that the explosion was caused by a natural extraterrestrial phenomenon, and was not caused by man. Is this theory a fact? No. The event is a recorded fact. Is this this theory generally accepted to be true, based on evidence to-date? Yes. Can this theory be shown to be false and be discarded? Yes."

    This isn't a minor difference. A hypothesis has far less weight to it than a theory.

    Based on all the research I've seen to date, the IDSA Lyme guidelines panel and CDC have a hypothesis - which is what they've stated they have. Not a theory. There is some evidence which refutes their hypothesis. There is also some evidence which supports their hypothesis.

    BUT in order for it to become a fully accepted hypothesis and then theory, they need to provide repeated testing which supports it as well as there has to be no evidence to refute it.

    Right now, they do not have this, even with four clinical trials using long-term antibiotics. And the logical argument falls down here, anyway: failure of long-term antibiotic use to permanently alleviate persisting symptoms is not evidence that bacteria cannot persist - it's evidence that under a given set of conditions a specific antibiotic failed to permanently alleviate symptoms. They're two separate issues.

    In the infectious disease world - to provide evidence of presence of infection - Koch's postulates used to be more important than they are now. For ethical reasons, it's difficult to prove Koch's postulates #3 and #4: The germ must cause the disease when introduced into a healthy person, and the germ must be re-isolated from the infected person.

    Conducting a test on people that involved providing evidence for these postulates would be unethical. So we don't do it. We do animal testing instead.

    ReplyDelete
  4. cave76,

    I'll add here that the NIH is conducting clinical trials using xenodiagnosis - they are placing lab-raised ticks on chronic Lyme disease patients to see if those ticks will be infected by Borrelia burgdorferi. But there are issues with this kind of study - there's no guarantee an infected person will pass bacteria to the tick even if it is there, and there are issues with ensuring the lab-raised ticks are free of pathogens.

    I am curious to know how this study is going and wonder who enrolled. Would be interesting to get a firsthand report from anyone involved and see if there are any preliminary results.

    ReplyDelete
  5. Please explain the theory vs hypothesis again? (grin)

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  6. cave76,

    Is that snark I detect, or was the above explanation inadequate?

    Are you watching any of the Dr. Zemel/Dr. Cameron chat now - 2 more minutes left as I post this... Well, check the Morning Call transcript. It's not as if I could get a word in edgewise there.

    ReplyDelete
  7. No, not snark------ but it's astute of you to ask me if it is.

    The explanation was 'inadequate' only because I couldn't wrap my mind around it enough to reply----in a snarky manner. LOL

    Keep coming back to if a theory is just a bunch of hypotheses -----

    And I'm truly a bit confused, but that's a normal condition for me.

    About watching the Z and C chat? Yawn. Been there. Done that. Different players. Wake me up when something's actually improved for Lyme patients.

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  8. Hello CO,
    I'm not sure, but the majority of my comments "published" (hitting the "Publish" button") disappeared that very moment and have not reappeared since, after several days.
    So I'm not sure if I am wasting my time here. But I'm - more or less - one of those who believe in the good in humans, like Anne Frank, so for the time being I keep trying...

    One question I have to the CDC (officer) who wrote: "Unfortunately, there are a small number of people, who receive appropriate treatment, still continue to have symptoms. The cause of this is unknown, but there has been no evidence to support the idea that these people are still actively infected. There is a lot of current research on this front, and the leading hypothesis at this time is that it is an autoimmune response (this is not that unusual in infectious diseases). " (Is the number small??)

    It's not unusual that infctious diseases lead to an "autoimmune response"? Definition of "autoimmune response"? EXAMPLES?!? I don't get it... (I'm aware of the speculation of "autoimmune arthritis" after Lyme arthritis - that's a hypothesis. Because I know that O'Dell et al. have shown remarkable effectiveness of minocycline in RA / rheumatoid arthritis, which they FIRMLY believe to be "autoimmune", I would suggest to try mino- or rather doxycycline, the latter being the AB with the best risk / benefit ratio of all ABs, as far as I know (but not for children). I want to add that joint problems are an early sign of hemochromatosis, the most common genetic disease, with more than a million US-Americans being homocygous, the large majority of them unknown / undiagnosed because of very low awareness of this iron storage disease - and no screening, although this would be very simple and cost effective...)

    I suspect that the CDC letter is referring to MS, which has been callled "autoimmune" for decades, see textbooks, or Wikipedia, or google... That's BS, pure nonsense. MS by definition is FOCAL (ASYMMETRIC = demonstrating some randomness) and VARIABLE over time: how could this come about by ?disordered / ?deranged immune cells, distributed evenly in the blood stream?
    To me it's obvious that the CAUSE of the MS lesions has to be sought within the lesions - I've stated that in other comments -, and the "obvious" cause was identified at least 8 decades ago, namely spirochetes, morphologically borreliae. In accordance with this, pilot studies have shown remarkable effectiveness of mino- and doxycycline...)
    (A second part follows, because of size limitation of comments.)

    ReplyDelete
  9. I want to comment on: "In response to #3, there has been reported improvement in patients while they were on antibiotic treatment during trials and that improvement stopped after antibiotics were stopped. One must consider that the antibiotics may have some positive effect on patients, whether that is antimicrobial, anti-inflammatory, or some other effect. It deserves more investigation. "
    Because I "know" that MS is a special demyelinating form of neuroborreliosis I refer to a CSF study in MS patients and controls by Brorson & Brorson from Norway which shows cystic / "spore" forms of B.b in the MS patients (and in only one control which later on was diagnosed as infected with LD, if I remember correctly).

    My interpretation of improvement with an AB course, but not for long: the active B.b are eliminated, inflammation and suffering decrease. But after the end of the AB course only a few of the "spores" (which are insensitive to "standard" ABs) have to revert, multiply - and the situation is as before. It's completely logical - and it's a testable hypothesis.
    If true a "pulse" of an AB effective against B.b, i.e. doxy, should be able to kill the reverted B.b before inflammation and suffering increase again.

    I have tested this approach for about 15 years by now, and with me it works - no (variable) symptoms any more. (Very few constant ones obviously are the result of permanent neuronal damage.)
    Of course this is far from a "proof" of the hypothesis. But what's important is reduction of suffering (i.e. inflammation in the CNS), and it's quite easy for someone who suffers to find out if the hypothesis and the proposed "test" by "pulsed" doxy can be helpful in his or her case.

    You have to change your perspective from the goal to eradicate the very last "hidden spore" to the goal to get rid of those B.b who start to multiply after having reverted from the "spore" form.
    The "spores" obviously are an evolutionary adaptation to evade the attack of a very active immune system: then by definition the "spores" are not or almost not attacked by the immune system, cause no - or insignificant - inflammation and suffering.

    Please find inconsistencies, prove my arguments wrong, if possible. If not it's your choice to test the concept / hypothesis in your case (which I know almost nothing about, therefore no detailed suggestions possible). It should be possible to find a doc who writes an Rp for doxy, the cost of which is almost negligible.
    chen-men

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  10. Anonymous Nov. 9 (presumed Chen men?),

    You wrote:

    "I'm not sure, but the majority of my comments "published" (hitting the "Publish" button") disappeared that very moment and have not reappeared since, after several days.
    So I'm not sure if I am wasting my time here. But I'm - more or less - one of those who believe in the good in humans, like Anne Frank, so for the time being I keep trying..."


    Thanks for your comments and for hanging in there. I'm hoping you have no problem seeing your published comments now?

    I have published all of your comments submitted as of 11:30 PM eastern time USA, November 9. All of them are present on different posts as you submitted them.

    If you do not see them, I recommend clearing the cache on your browser and reloading each page to see if the comments appear.

    If you still do not see them after that, I recommend trying each of the following in order and seeing if you get a positive outcome:
    1) try a different browser,
    2) reboot your computer and reopen the browser,
    3) ask someone else on a different computer if they can see your comments, and 4) if the previous three suggestions fail, send me a screenshot of your pages showing the comments as they display for you along with your browser type, version, and operating system with version - I may be able to help you figure out what happened.

    (more)

    ReplyDelete
  11. For Anonymous Nov. 9/presumed Chen men:

    One question I have to the CDC (officer) who wrote: "Unfortunately, there are a small number of people, who receive appropriate treatment, still continue to have symptoms. The cause of this is unknown, but there has been no evidence to support the idea that these people are still actively infected. There is a lot of current research on this front, and the leading hypothesis at this time is that it is an autoimmune response (this is not that unusual in infectious diseases). " (Is the number small??)

    It's not unusual that infctious diseases lead to an "autoimmune response"? Definition of "autoimmune response"? EXAMPLES?!? I don't get it... (I'm aware of the speculation of "autoimmune arthritis" after Lyme arthritis - that's a hypothesis.


    That chronic Lyme disease is caused by an autoimmune disorder or autoimmune-like disorder is only one hypothesis on the table for what causes Lyme disease patients' persisting symptoms after initial antibiotic treatment. Just about any chronic Lyme disease patient and their doctor you talk to will tell you they take an issue with this hypothesis, and state that a chronic infection is the cause for their persisting symptoms. And this, of course, is where the debate over chronic Lyme disease begins.

    The hypothesis that chronic Lyme disease is an autoimmune condition has been problematic for me on more than one count:

    1) While there is a body of evidence and much discussion that Lyme arthritis can be autoimmune in nature, there is not much evidence or discussion about the remainder of Lyme disease's persisting symptoms being autoimmune in nature.
    2) There are actually some statements made in various scientific publications which state that chronic Lyme disease is not autoimmune in nature.
    3) While these statements have been made, the CDC and NIH have both stated on their websites that chronic Lyme disease is most likely thought to be autoimmune-like.
    4) All of this is said even though there is some evidence some spirochetes survive antibiotic use in animal models.
    5) All of this is said even though there is some evidence that even dead spirochetes alone could cause problems - in which case, the immune system is initially trying to attack antigens/dead spirochetes and not self - technically not an autoimmune condition at this stage (though in theory, that could be a future state).

    For more info on chronic Lyme disease/post treatment chronic Lyme is not an autoimmune disorder while chronic Lyme arthritis is, I recommend checking out these 2 posts: Do Different Genetic Haplotypes Matter? and More on Genetic Haplotypes and Lyme Arthritis.

    As for EXAMPLES of infections in general which lead to autoimmune disorders, check out this paper: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2665673/ - The role of infections in autoimmunity. This paper includes discussion of different infections which are connected to autoimmune conditions.

    You might find the section on Borrelia burgdorferi of interest - as well as the section on MS, which states: "Antigens from herpesvirus type 6 were found in MS plaques but not from tissues from other neurological disorders".

    Even though Borrelia could be implicated as a trigger for MS, there are other contenders.

    (more)

    ReplyDelete
  12. For Anonymous Nov. 9 (presumed Chen men):

    "Because I know that O'Dell et al. have shown remarkable effectiveness of minocycline in RA / rheumatoid arthritis, which they FIRMLY believe to be "autoimmune", I would suggest to try mino- or rather doxycycline, the latter being the AB with the best risk / benefit ratio of all ABs, as far as I know (but not for children). "

    Quite a number of people are using minocycline and doxycycline to treat various conditions - not just Lyme disease. The reason why some doctors use them on patients are for their anti-inflammatory properties and not their antibiotic properties.

    This is one argument, by the way, I've heard patients give when discussing their stance against the IDSA's approach to treating Lyme disease: Even if they don't think Lyme disease can be a chronic infection, why not use these antibiotics because they have anti-inflammatory properties anyway? If the patient experiences relief and improvement, isn't that the most important thing - the outcome? And especially if nothing else has helped?

    "I want to add that joint problems are an early sign of hemochromatosis, the most common genetic disease, with more than a million US-Americans being homocygous, the large majority of them unknown / undiagnosed because of very low awareness of this iron storage disease - and no screening, although this would be very simple and cost effective...)"

    Anyone can find out if they are homozygous for hemochromatosis if they sign up for a service like 23andme. They can also find out if they have issues with methylation, although some doctors state that being heterozygous for methylation SNPs is an issue and some say it isn't and there isn't enough evidence. There are other things one can find out through using such a service which may be of use to patients in determining if they have other issues contributing to their symptoms. Ultimately, though, it would be most useful if those with persisting symptoms agreed to use such a service and find each other and compare notes. Patients Like Me is a site which tries to do this, but unlike 23andme, there have been criticisms against Patients Like Me because of how third parties may use patients' data.

    There are other genetic conditions which may lead to joint diseases. For all I know, genetic predispositions to other conditions may be associated with one having a more difficult time fighting off a Lyme disease infection. It's certainly something worth investigating. I've wondered if these HLA-DR alleles in mice are relevant in a human model of infection: Immune + Infection = HLA-DR alleles determine responsiveness to Borrelia burgdoferi

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  13. Chen-Men wrote:

    "Because I "know" that MS is a special demyelinating form of neuroborreliosis I refer to a CSF study in MS patients and controls by Brorson & Brorson from Norway which shows cystic / "spore" forms of B.b in the MS patients (and in only one control which later on was diagnosed as infected with LD, if I remember correctly)."

    Could you please provide a link to this study on MS patients? It would be helpful to know which study you are mentioning.

    Also, based on what you speculate, do you think demyelination is caused only by Borrelia or do you think other factors are involved as well?

    "If true a "pulse" of an AB effective against B.b, i.e. doxy, should be able to kill the reverted B.b before inflammation and suffering increase again."

    Are you aware that in Embers et al paper on Persistence of Borrelia burgdorferi in Rhesus Macaques that the researchers suggested research on the use of pulsed antibiotics could be useful? See the full paper here:http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0029914

    Also, what do you think about studies which demonstrate that different Borrelia strains respond to different antibiotics? Why doxycycline for neuroborreliosis - what about other antibiotics?

    I get the impression sustaining MBC early in infection is important in Lyme disease, based on several items I've read - and I'd like to see more studies completed on this especially on specific HLA-DR models.

    Another thought: If the hypothesis that Borrelia produces persister cells turns out to be correct, then is it possible that what would be optimal isn't to pulse antibiotics but instead to administer additional treatment which prevents persisters from occurring? Because if you could design such a treatment, then you'd only need to take one course of antibiotics and wouldn't need to pulse them. Check out this article: http://www.boston.com/news/health/blog/2011/05/bu_researchers_1.html

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  14. For Anonymous November 9/presumed Chen-men:


    "I have tested this approach for about 15 years by now, and with me it works - no (variable) symptoms any more. (Very few constant ones obviously are the result of permanent neuronal damage.)"

    How do you learn to distinguish between temporary and permanent symptoms? Some things may take a long time to reset and heal - they might not be permanent damage.

    "You have to change your perspective from the goal to eradicate the very last "hidden spore" to the goal to get rid of those B.b who start to multiply after having reverted from the "spore" form."

    I think the most important thing to do is to attack the Borrelia as soon as possible, early in infection and do so aggressively. As for later stage infection, if the Borrelia has gone dormant, one could go on for a long time with one's immune system keeping it in check until some stressor, illness, accident or surgery makes conditions ripe for Borrelia to come out of dormancy. This is a hypothesis, note - but this is the point at which you'd want to hit it hard if you know Borrelia is the cause for your symptoms.

    One can conduct empirical tests and pulse antibiotics - as you've said - and some doctors have already been giving patients such treatment. In order for this to become a widespread treatment, though, one would have to provide evidence it works in a clinical trial. In the meantime, patients who are suffering will line up to try it with the help of doctors who use such treatment. Based on observation, even with such treatment, some people get better and some people, unfortunately, do not. What distinguishes one group of patients from another in this situation remains unknown. I'd like to know what makes them different.

    "The "spores" obviously are an evolutionary adaptation to evade the attack of a very active immune system: then by definition the "spores" are not or almost not attacked by the immune system, cause no - or insignificant - inflammation and suffering."

    I prefer to use the terms "round bodies" or even "spheroblasts" and not "spores". "Spores" makes it sound like we're talking about fungi.

    One thing to consider is that Borrelia round bodies have been found in the midgut of ticks. Perhaps it could be educational to consider why Borrelia are in a round body form in the midgut of the tick and how that is analogous to why Borrelia might make a round body in its mammalian host?

    "Please find inconsistencies, prove my arguments wrong, if possible. If not it's your choice to test the concept / hypothesis in your case (which I know almost nothing about, therefore no detailed suggestions possible). It should be possible to find a doc who writes an Rp for doxy, the cost of which is almost negligible."

    I can no longer take doxycycline, so I cannot be the one to test your hypothesis directly. However, as I have stated above and in comments throughout this blog in response to your comments - there are plenty of people out there who are already doing exactly what you suggest.

    Many patients are out there who could tell you about their individual success (and in some cases, lack thereof) in trying different antibiotic courses to treat their condition/conditions. I'm currently not your best candidate to test your hypothesis, so I advise going to different Lyme disease forums and lurking at first and seeing who states they use pulsed antibiotics and what their self-reported improvements/changes are.

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  15. Hello CO,
    too many topics to be addressed in 4096 keystrokes (upper limit for comments). I'll try.
    --- "Spores" is short, just read "persisters", dormant..., rounded bodies...
    --- I commented from 4th to 6th Nov., looked for replies for maybe two days, most often at my first comment (Nov.4th, 2 parts), where no reply appeared. I lost the overview, did not recognize your replies to other comments later on, i.e. the 5 parts of Nov. 9th above.

    --- The Brorsons: enter Brorson borrelia into PubMed, see oldest hits, 1997& 98..
    (From my memory: ß-lactame ABs drive B.b into the dormant form, so the "textbook" therapy might aggravate the LD problem.)
    --- Of course you may dream of a "sure fire" protocol to get rid of ALL forms of B.b. (Remember: the "ingredients" of such a therapy have to pass the blood-brain-barrier to be effective in neuroborreliosis!)
    But as long as such a therapy is not available we have to look for a therapy for millions of chronic LD patients - and I just wanted to offer a protocol which worked, and still works, for me. It's very simple, cheap, well tolerated. (You write: "I can no longer take doxycycline." Unfortunately we don't get to know WHY...)
    --- Pulsed therapy proposed by Prof. Preac-Mursic: I refer to http://www.ncbi.nlm.nih.gov/pubmed/1677097 - unfortunately I do not have that paper at hand...

    --- You suggest that pulsed ABs are common in LB therapy - I'm not aware of that. To be precise: The pulses have to be SHORT (1-2 days), and in the interval the immune system is thought to be sort of "trained" in cleaning up the scene.
    --- I just read http://thedianerehmshow.org/shows/2012-02-29/diagnosing-and-treating-lyme-disease/transcript - very interesting, but not the faintest hint to pulsed therapy from top experts in 2012! They start at a month of ABs, obviously have NO IDEA of the concept of pulsing = training the immune system to fight B.b. They have no respect for the immune defence, their concept (and your's?) is "over-kill".
    (At 11:54 HARED reports: "I have a friend ... who's had Lyme disease for 20 some years. Recently diagnosed with cancer, went to chemotherapy and as a result, has not had any Lyme disease symptoms for at least three years since the chemotherapy. Has anyone on your panel encountered this scenario?"
    Fallon & Co had NO IDEA. To me it's obvious: chemotherapy of course will have an antimicrobial effect, possibly even against dormant forms. But I prefer to hit the "bugs" selectively, i.e. with doxy, not everything - including my own cells - with a sledge hammer.)

    My impression: You are not interested in a simple approach that could be adopted by hundreds of thousands of doctors right away. I wonder why this is so, why you are advocating all kinds of research (which will take years, at least, with questionable "progress", see MS therapy with billions for research, over decades by now!), even fund-raising for a film on a related disease, diverting attention from a very clear concept.
    chen-men

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  16. chen-men wrote:

    I commented from 4th to 6th Nov., looked for replies for maybe two days, most often at my first comment (Nov.4th, 2 parts), where no reply appeared. I lost the overview, did not recognize your replies to other comments later on, i.e. the 5 parts of Nov. 9th above

    Which comments are you specifically not seeing which you submitted? Other than the comment which you posted yesterday which had its content dumped by Blogger's interface, every comment I could see that you submitted for moderation has been published.

    "The Brorsons: enter Brorson borrelia into PubMed, see oldest hits, 1997& 98.. (From my memory: ß-lactame ABs drive B.b into the dormant form, so the "textbook" therapy might aggravate the LD problem.)"

    Yes, I'm aware of the Brorsons' research. Based on some research I've read, there's some suggestion Augmentin may be better for treating Lyme disease depending on strain. It's not just a morphological issue, it's not just about what form Borrelia takes but strain based on what I've read.

    Either way, both the Brorsons and those who have done antibiotic studies on different Borrelia strains would need to have their research validated by other researchers. In order to have widespread adoption of their findings in medical schools and clinics around the world, someone else has to reproduce their findings and conduct trials in human subjects. This is how it has always been, because 1) what works in a test tube may not work in an animal model, 2) what works in an animal model may not work in a human, and 3) in general, the medical profession at large does not want to rely on anecdote - it wants to see a large group of people respond positively to a specific treatment rather than rely on one person's positive experience with a drug here and there. It's their position that to do otherwise would be irresponsible medicine.

    There are doctors, of course, who will experimentally treat patients with antibiotics in ways which have not cleared clinical trials. Some patients get better from such approaches and some do not.

    In the former approach, it's not clear that those who suffer receive any treatment that helps because to my knowledge, no one has tested any new treatment which helps patients in my situation, period. We are exactly where we were 20 years ago, even with 4 trials. Why? That's a long story. If you know more about it, let me know. In the latter approach, at least some people who suffer find relief, and improve. So one could argue that for them, they have found their answer.

    "But as long as such a therapy is not available we have to look for a therapy for millions of chronic LD patients - and I just wanted to offer a protocol which worked, and still works, for me. It's very simple, cheap, well tolerated. (You write: "I can no longer take doxycycline." Unfortunately we don't get to know WHY...)"

    You have mentioned your protocol here over the course of numerous comments. And my answer that I can no longer take doxycycline should be sufficient for anyone. Why I can't really shouldn't matter for the sake of coming up with a new approach for me to try.


    (more below)

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  17. (For chen-men - continued)

    "You suggest that pulsed ABs are common in LB therapy - I'm not aware of that. To be precise: The pulses have to be SHORT (1-2 days), and in the interval the immune system is thought to be sort of "trained" in cleaning up the scene."

    If you want to find patients who are experimenting with a pulsed antibiotic therapy, you can find them online on support groups and Lyme disease patient fora. I suggest lurking at a few and seeing what people have tried - they have tried all kinds of things.

    "I just read http://thedianerehmshow.org/shows/2012-02-29/diagnosing-and-treating-lyme-disease/transcript - very interesting, but not the faintest hint to pulsed therapy from top experts in 2012! They start at a month of ABs, obviously have NO IDEA of the concept of pulsing = training the immune system to fight B.b. They have no respect for the immune defence, their concept (and your's?) is "over-kill"."

    What a doctor decides to discuss on the Diane Rehm show may not be what he does with every patient he sees in practice. Doctors may share a general approach in public and have more specific and different approaches for individual patients in their private practice.

    I don't advocate any specific treatment other than hitting an early infection hard as early as possible. Once you're talking about persistent, late stage infection, this is a different situation based on what I've read. All the documentation on late stage studies states that with existing antibiotic therapies, recovery is delayed and often incomplete. It seems the longer the infection continues, the less likely hitting it hard appears to work.

    I don't advocate any specific treatment for patients for several reasons - reasons which I have discussed elsewhere on this blog, such as I'm not a medical doctor and anything I write here can not be used as medical advice, and that what might work for one person may not work for another anyway. But there are other reasons as well.

    "(At 11:54 HARED reports: "I have a friend ... who's had Lyme disease for 20 some years. Recently diagnosed with cancer, went to chemotherapy and as a result, has not had any Lyme disease symptoms for at least three years since the chemotherapy. Has anyone on your panel encountered this scenario?"
    Fallon & Co had NO IDEA. To me it's obvious: chemotherapy of course will have an antimicrobial effect, possibly even against dormant forms. But I prefer to hit the "bugs" selectively, i.e. with doxy, not everything - including my own cells - with a sledge hammer.)


    Why do you assume that chemotherapy has an antimicrobial effect? There could be another possibility, such as chemotherapy changes one's immune system and is an immune modulating drug. Look at rituximab for ME/CFS and read what its method of action is.

    Also, look at the use of ceftriaxone and filgrastim on this blog as well as VGV-L.

    It might be the case that some people who have persisting symptoms have something wrong with their immune system which makes it harder to fight off infections. They may need BOTH antibiotics and an immune modulating drug at the same time to get better.

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  18. (For chen-men - continued)

    "My impression: You are not interested in a simple approach that could be adopted by hundreds of thousands of doctors right away."

    Those are your words, not mine. I did not say I was not interested in "a simple approach that could be adopted by hundreds of thousands of doctors right away". I am. I'm interested in hearing about any of a number of approaches. Totally open mind, here, except if it starts sounding dangerous and exploits people.

    It's just that even if you state this approach works, that's not enough reason for those hundreds of thousands of doctors out there to begin using it. The first two words out of their mouths will be this: "Prove it".

    Most doctors - with a few exceptions - will not experimentally test this kind of idea. They are reluctant for a variety of reasons, anywhere from they don't have enough evidence based on studies that it works to what they're learned about antibiotic resistance and the concern that such a treatment will lead to resistance (and not resistance by the Borrelia - but resistance from OTHER bacteria such such as staph). In some cases the answer can even be they don't want to deal with the complexities of a patient with Lyme disease and coinfection or two - they feel it is outside the scope of their practice.

    Not every doctor sees these issues the same way, and the doctors who are willing to experiment think they have ways to reduce the risk of resistance and certain side effects.

    "I wonder why this is so, why you are advocating all kinds of research (which will take years, at least, with questionable "progress", see MS therapy with billions for research, over decades by now!)...

    I'm advocating for research because like many patients, I want to see the end of the Lyme wars and the debate over persistence. It's been years of the same story with not enough research directed towards the kind of studies which would be more likely to resolve the debate and find new approaches to treat patients.

    The issue here becomes how to ensure that the right studies get done which bring us closer to solving the debate and developing new treatments which many doctors around the world will be willing to support and use.

    Funding has been so short for government based research that many advocacy groups for different diseases are turning to privately funded research and using crowdfunding for research. The money has to come from somewhere.

    Your idea may be a very good one, and you want doctors around the world to use it. Fine - now tell me HOW you get them to do so without having studies and clinical trials first which provide them with evidence it works? As I said, most doctors will not dispense antibiotics the way you are suggesting without having evidence from studies and trials. If your idea is to convince doctors that your approach will work without using studies and trials, how do you suggest one can do this?

    It can't just be by having one person - namely me - try it. Even if I could use doxycycline and were to try it, got better, and wrote "Yay, I'm all better now", that wouldn't be convincing to all these doctors or scientists.

    They would be happy for me - sure. But they could just say I would have gotten better with time anyway or they could say it was something else I did (changed my diet, got more sleep, took a different drug like low dose naltrexone, etc) which helped me get better. Objectively, there is no way for them to know and no controls.

    (more below)

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  19. (For chen-men - continued)

    "...even fund-raising for a film on a related disease, diverting attention from a very clear concept."

    I wasn't trying to divert attention from anything (?) by mentioning the film, Canary In A Coal Mine to readers of this blog. I was pointing out how similar the situation is of a patient with ME/CFS to one with chronic Lyme disease, and how I admired Jennifer Brea's will to see her message get out there by making her own film even though she is very ill and fatigued all the time.

    This blog covers a lot of ground - about Lyme disease research, research about similar conditions, general science, and the patient experience. There isn't any one post I'm making in order to divert attention from other posts. They each have their own place.

    And there are things which I make a note about outside of this blog in my own personal notes because they are ideas in their infancy or they are complicated and I haven't figured out how to blog about them or even if I should blog about them. Sometimes I find what I'm writing about is a stretch as it is, and I've said so.

    CO

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