0 Notes Posted On VGV-L

I posted some of my notes on VGV-L on LNE, related to the previous entry on VGV-L which I posted on Monday. While there is a lot I posted about VGV-L based on interviews, press releases, and patents - and while I outlined how the immune system normally should work - I did not give a concise explanation of how the immune system doesn't work relative to polyclonal b cell activation.

I think another entry on this topic is in order. But in the meantime, I have decided to share the notes I posted on LNE about VGV-L here before I write a more concise post on the immune system and polyclonal b cell activation...

---

I did as much poking around about Viral Genetics' new chronic Lyme disease candidate drug, VGV-L, as I could and it wasn't easy. One CV, several patents, and a few Dr. Karen Newell Roger interviews later, and the best I could get out of it is that it is not just a synthetic thymus peptide that they patented but a method of replacing a peptide, CLIP, on the surface of B cells with this synthetic thymus peptide (which somehow maps to the MHC genetic type (HLA) of the patient) so that it activates Treg cells. The activation of these Treg cells is supposed to lead to reduction of non-specific B cells (polyclonal B cell activation).

In the patent, there is also mention of using bacterial antigens and antibiotics as adjunct treatments which are optional. The impression I'm left with is the bacterial antigens are used to prime new B cells and if there is any existing infection, antibiotics are used.

So the entire method of treating patients may be: a) VGV-L alone, b) VGV-L and antigen exposure, or c) VGV-L, antigen exposure, and antibiotics are used. (antivirals and antiparasitics may also be used, depending on the patient's diagnosis)

[...] I don't get the impression after reading everything I've read thus far that chronic Lyme disease is a pure B-cell disorder. But maybe it's a variant on that? Maybe cell-mediated immunity is somehow affected by B. burgdorferi?

---

I've made a major edit on my blog entry. I still think I need a revised version of the post to be made in the future, but I am so exhausted at the moment that I think it won't be for a few days at least. Maybe call it the revised executive summary version, because the current post is rambling even relative to rambling for me.

Why do I mention this edit here? Because it is very important to note, relative to how I infer the way VGV-L has been hypothesized to work:

The edit was about Tunev and Barthold's research on lymphadenopathy in Borrelia burgdorferi infection in mice. In their research, they noticed an outsized B-cell response to the presence of spirochetes. However, what they found differed from what has been found in polyclonal B-cell activation in other infections - where it's clear runaway non-specific polyclonal B-cell activation leads to autoimmune disorders. In Tunev and Barthold's research, the outsized immune response had B-cells which were specific for Borrelia burgdorferi yet were of low quality. This is notably different from typical polyclonal B-cell activation.

Edited to add - V. important to SEE: http://spirochetesunwound.blogspot.com/2011/07/does-borrelia-burgdorferi-cause.html

Excerpt from the above link:

"From their observations, the authors speculated that B. burgdorferi somehow subverted B cell activation in the lymph node so that the end result was a large number of plasma cells secreting antibodies of poor quality. By poor "quality," I assume that the authors meant that the affinity of the antibody for B. burgdorferi proteins was low and that the "wrong" subclasses of IgG antibodies were expressed. The most abundant IgG subclasses being produced in the draining lymph node at its most swollen state were IgG2b and IgG3. Whether other IgG subclasses would be more effective at clearing B. burgdorferi from the host and whether the affinities of the antibodies for B. burgdorferi proteins were poor still need to be determined experimentally. Perhaps a classic T-cell dependent B cell response involving the formation of germinal centers accompanied by somatic hypermutation, affinity maturation, and appropriate class switching would have led to production of "high" quality antibodies. If the authors are correct, they have revealed yet another means by which B. burgdorferi could persist in the host."

I don't know how this difference in response would work with VGV-L. It isn't clear to me, and I have to read through more research to understand it - at least hypothetically. I also want to know if anyone else has used similar technology to treat pure B-cell disorders and if so, what the pros and cons were. If this is a completely novel invention, then it's harder to evaluate and all one can do is look at the animal trials if one has access to them and examine the underlying hypothesis for its application.

---

The paper that this technology primarily appears to be based on is this one:

M. K. Newell, R. P. Tobin, J. H. Cabrera, M. B. Sorensen, A. Huckstep, E. M. VillalobosMenuey, M. Burnett, E. McCrea, C. P. Harvey, A. Buddiga, A. Bar-Or, M. S. Freedman, J. Nalbantoglu, N. Arbour, S. S. Zamvil, and J. P. Antel. 2010. TLR-Mediated B Cell Activation Results in Ectopic CLIP Expression that Promotes B Cell-Dependent Inflammation. Journal of Leukocyte Biology. Online e-Pub. July 14, 2010.

Link to free full text of this publication: http://www.ncbi.nlm.nih.gov/pubmed/20631258

I'll just post the abstract here, and you can read the entire text at the link above:

Abstract

Infectious pathogens produce compounds called Toll ligands that activate TLRs on lymphocytes. Acute activation triggered by certain TLRs appears to "jump start" the innate immune response, characterized by the release of inflammatory cytokines and cellular expansion.

In some individuals, there is a failure to control acute inflammation, resulting in postinfectious, chronic inflammation. Susceptibility to chronic inflammation is strongly associated with an individual's MHC genes. Recent clinical trials for several autoimmune diseases characterized by chronic inflammation suggest that B lymphocyte depletion therapies dampen chronic immune activation. However, currently, there is no known mechanism that accounts for the correlation among TLR activation, MHC genetics, and a pathological role for B-lymphocytes.

Our hypothesis is that TLR-activated B cells (B cells that have been polyclonally activated in the absence of antigen-specific signals) are not controlled properly by T cell-dependent B cell death, thereby causing B cell-dependent chronic inflammation.

Here, we show that treatment with Toll ligands results in polyclonal B cell activation accompanied by ectopic expression of CLIP. Furthermore, by adoptively transferring purified CLIP+ B cells in syngeneic animals, we find that CLIP+ B cells induce production of TNF-α by host T cells. Finally, we demonstrate that CLIP-targeted peptide competition results in the death of polyclonally activated CLIP+ B cells.

---

I think I know at this point what my missing pieces are now:

- describe the role of Treg cells (regulatory T cells) and how they relate to killing off B cells and generating more targeted immune responses.

- describe the hypothesis that Foxp3+ Treg generation in the thymus is somehow dysfunctional in those with persisting symptoms (I think this has some relationship to the core hypothesis behind VGV-L's use).

- And I have to more clearly state that even if the Foxp3+ Treg generation is what it is happening, there may be some risk involved in proceeding with this kind of treatment. Wikipedia managed to explain some of it, and while Wikipedia is not the most reliable resource on everything, it is relatively easy to follow and this particular entry (so far) jives with what I've seen in other sources:

http://en.wikipedia.org/wiki/Foxp3

This is also not half bad, and recommend checking it out: http://en.wikipedia.org/wiki/Polyclonal_B_cell_response

Plus, of course, there are the papers I link to on the blog.

The more I delve into this, the more questions I have... Tunev and Barthold's paper, in particular, lead me to wonder if the hypothesis underlying VGV-L's design developed with the scenario described in their research being taken into account. Between T & B's research plus other publications, I get the impression that in at least the animal model of immune response to Bb, that there is a mixed state response to it - It is both immune suppressing and immune stimulating. Some research has even indicated a certain amount of tolerizing is involved. (http://en.wikipedia.org/wiki/Peripheral_tolerance - anergy plus inflammation; see also http://users.ox.ac.uk/~path0116/tig/tolg2.html for a more detailed explanation)

Adding a bacterial antigen/adjuvant (and possibly antimicrobial medicine) to the treatment may be a way of working around this combination, in order to produce new B cells which are stimulated and respond specifically to Bb and not be nonspecific - and in order to eliminate any remaining infection if there is one present.

This is complicated - and while more and more is being learned about immunology every day, there are still an enormous number of unknowns...

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5 THIS FRIDAY: Lyme Disease chat with Dr. Lawrence Zemel and Dr. Daniel Cameron

Well.

This could get interesting?

If you're awake and in the right time zone, this Friday, July 1 at 12 pm (EST) there will be a live online chat between the IDSA's Dr. Lawrence Zemel and ILADS' Dr. Daniel Cameron.

From the Hartford Courant:

Chronic Lyme disease: Does it exist and should it be treated with long-term antibiotics? Join us for a live chat Friday, July 1 at noon EST (11 am CST, 10 am MST, 9 am PST) about Lyme disease, including the controversial issue of whether patients should be treated with long-term antibiotics for chronic Lyme disease. Morning Call health reporter Milton D. Carrero will chat with representatives from the two main organizations managing the treatment of Lyme disease in the United States. Dr. Lawrence Zemel of the Infectious Diseases Society of America and Dr. Daniel Cameron from the International Lyme and Associated Diseases Society will answer your questions. Send questions in advance to milton.carrero@mcall.com.

Dr. Lawrence Zemel is Chief of the Division of Rheumatology at the CT Children's Medical Center and Professor of Pediatrics at the University of Connecticut. Dr. Zemel is a graduate of New York's Brooklyn College and SUNY Buffalo followed by residency at Buffalo's Children's Hospital and fellowships at Tufts-New England Medical Center and Boston Children's Hospital. Dr. Zemel, works in the field of Pediatric Rheumatology and Pediatrics, and has expertise in multiple areas, including Lyme Disease, Antiphospholipid Syndrome (APS) and Juvenile Rheumatoid Arthritis.

Dr. Daniel Cameron graduated from the University of Minnesota School of Medicine and Public Health followed by residencies at Beth Israel Medical Center and Mt. Sinai School of Medicine in New York. Dr. Cameron is widely recognized for conducting epidemiologic research while practicing medicine. He has been viewed as a pioneer in Lyme disease as an author of practice guidelines, analytic reviews, and clinical trials. He currently sees patients in his private practice in Mt. Kisco, New York while continuing his research and writing. He maintains the website LymeProject.com.

Link Source: http://www.courant.com/health/mc-health-chat-lyme-disease,0,4675217.htmlstory

Here's my suggestion to you, if you can participate:

I know many of you reading along are Lyme disease patients and you are likely to want to ask Dr. Cameron questions about treatment. That's understandable and okay, but you can ask him these questions any time because he will be willing to help you. What I recommend you do instead write up very specific scientific questions to ask Dr. Zemel - such as "How much time does Borrelia burgdorferi spend in intracellular space and what research have you conducted beyond the fibroblast research?" and "Why does the Lyme guidelines panel state there is no evidence that Lyme disease can persist after antibiotic treatment when there are a number of human case studies and animal studies which provide evidence to the contrary?" - and email them to milton.carrero@mcall.com ASAP.


This is the time to ask an IDSA member about their position and ask them to substantiate it. Opportunities like this do not happen all the time. Use it wisely.

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0 Daily Kos Posting Tomorrow At 6:30 PM EST

Please note that another entry will be posted on the Daily Kos tomorrow, May 26, Thursday at around 6:30 PM EST in observance of Lyme Disease Awareness month.

That is: 12:30 HST,  3:30 PM PST, 22.30 UTC (GMT)

The topic for this Daily Kos posting is going to be Long Term Antibiotic Treatment and asks why this is considered a controversial treatment for persisting symptoms of chronic Lyme disease as well as its named counterpart, Post-Lyme Disease Syndrome.

Check it out tomorrow at the below link - and comment there if you have a Daily Kos account:


http://www.dailykos.com/blog/Lyme%20Disease%20Awareness


As an extended side note, there will be discussion on the long term use of antibiotics to treat acne - and related to this, I really find this dialog on a Medscape transcript for a medical education credit class, "Long-term Oral Antibiotics for Acne: Focus on Safety (Slides With Transcript)" to be interesting and totally apropos to tomorrow's post:

Dr. Eichenfield: Yeah, and many times in practice I actually have the discussion with the patient where I've said, "Look, we don't want you on long-term antibiotics if we can help it. You're doing great." We have a decision to make here, and it's really a binary decision. Try to get them off the oral antibiotic at that time substituting topical or rolling it on a few more months. Depending upon how severe their disease was previously, I wouldn't mind another 2 or 3 months on balance in taking care of that patient.

Dr. Thiboutot: I think you really have to go by what their disease is telling you. That's absolutely important.

See the entire transcript and thumbnails from the slideshow at:
http://www.medscape.org/viewarticle/588328

It's definitely food for thought when thinking about approaching the treatment of persisting symptoms of Lyme disease from different angles.

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0 Administrivia: Notes & Future Topics

Just popping in here for a moment amid fighting off some strange viral infection to leave a few short notes for my readers:

• When I'm feeling particularly unwell above and beyond my usual unwell, posting frequency may slow down. I'll try to give advance notice in comments or in a post like this one.
  
• Here's your notice: My posting frequency is slowing down now because I'm unwell.
  
• In general, new posts are less likely to be made during the weekend. What do I mean by "weekend" given everyone reading is in different time zones? Refer to island time.
  
• If I'm near a computer, I will check comments in the moderation queue during the weekend and post them.
  
• I may or may not respond to comments during weekends.
  
• Friday Four posts are sometimes posted as late as midnight Friday, Honolulu time (-10 h UTC/GMT).
  
• Reader comment & mailbag has included the following requests for further discussion: the immune system and how to build it, alternative medicine, XMRV, Morgellons, and the effectiveness of canine Borrelia blood tests.
  
• I plan to write an entry or two on each of these topics in the future. There is no guarantee on how soon each will be addressed. The timeline for each is dependent on my health, availability, other preexisting or newsworthy posts already in the pipeline, and the amount of time needed for additional reading and research to address each issue.
  
• Lymenet Europe has some interesting threads on Lyme disease organizations throughout Europe. I recommend viewing some of them, as well as guidelines different countries use. Tip: If you use the Chrome browser, you can translate web sites in other languages into English with a click of a button.

And now your moment of patient experience zen... This is something I think about when I get sick or am more symptomatic than usual - maybe some of you reading along will see yourself in it, too:

All I have to add for now. I'm going to lie down.

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33 Having a Dialog About Censorship

This has been a crazy week here at Camp Other.

I was originally going to post my usual Friday Four science column, but it may just slide to the Saturday Six or something like that.

I have something else to say now, and I'll post more science later.

This post isn't about being banned from a forum, if you were expecting to hear more about that... Yes, I was puzzled why I got banned, and so were others. It happened, I wrote about it, and then I was going to move on.

However, I can't completely move on without saying a few things about the comments I've been receiving.

Right now, what I'm hearing and seeing is that people have been asked on the forum to not even mention the name, "Camp Other".

Not to speak about it, and any attempts to discuss it will lead to the thread being closed.  A request was made to PM the moderators about anything having to do with Camp Other instead.

And I'm also getting comments and reports about other people who think they've been censored, and think censorship on various groups has gotten out of hand.

Why I'm being censored now, I don't know - I consider this the hallmark of absurdity.

First banned, now censored?

This is a blog about science and social issues surrounding Lyme disease and other tickborne infections.

Mentioning this blog anywhere really shouldn't be that controversial... I don't think anything I've said anywhere online is that particularly controversial, other than occasionally I mention the somewhat-controversial-to-mainstream-medicine-IDSA-guidelines idea that Lyme disease might be a persistent, chronic infection.

But I want to say something about the people left behind, because what is happening there is controversial:

People shouldn't have to be in fear of what they say getting taken out of context, or be afraid to ask or be asked a challenging question - or be afraid, perhaps, of not saying something quite the right way using the right words.

What we need to do when people disagree, or challenge assumptions, or ask for more information is to simply respond to that: Have a dialog. Talk. Discuss.

A lot of misunderstandings that people have can be cleared up when they have  a meta-discussion - which is a discussion about how we discuss things and why we discuss things the way we do.

Shutting people down, kicking them out, closing the door, and putting earplugs on doesn't make them go away. They're still out there, saying something to someone - maybe even about you - only now you can't hear them.

Even if you can't hear them and they are far away, chances are the ideas they hold dear and the values they possess may be found in the next person who comes in the door, a stranger who greets you, or a random person who shows up on an online forum.

And then you will have to deal with those same ideas, same values, and other things you may disagree with or be challenged by.

People will also have an effect on those they leave behind whenever they go away - there are always ripples in their absence, whether they left because they were banned, left of their own free will, left because their computer died, left due to poor health, or any of a number of reasons.

Because when it comes to being amongst other patients - we all ultimately share in the same suffering and want the same things. And we notice that absence.

What makes a support group what it is is the patients, more than anyone else. And the needs of patients are what is paramount: building community, research, safety, understanding, proper diagnosis and treatment, and support. And just knowing that we're reaching out to others who are going through - or have gone through - the same things we have.

Maybe how each of us express our needs for those things differs, and maybe how we hope to achieve it differs - but the bottom line is that through dialog we can discuss those differences rather than deny them, or push them away.

Censorship is not the way to go. More communication is, in my opinion. Even if it's somewhat messy and misunderstandings take place. That's what compassion and forgiveness are for - allowing mistakes and accepting apologies.

If someone is truly being egregious in their behavior on a forum, that's one thing - and I think one has to draw the line somewhere. Somewhere reasonable.

I may have only been on this one forum for a few months, but that's enough time to see how things went - and it's particularly telling how things went after I've been gone. When people voluntarily leave due to censorship and people try to leave because they want out, that's saying something about the atmosphere they're in.

I don't like it.

I want anyone who posts comments to my blog to know that I will do my best not to censor any of you and let you speak your mind. Obviously you have to follow Blogger's terms of service - I have no control over those - and I have a rule that when you're discussing personal physicians, that you do not use their name or initial (use "my doctor" or  "a friend's doctor"), unless it's in relationship to something they said in the media or a published paper.

That's it. I really don't have any other rules, other than don't spam my blog or phish for information.

I think the time is ripe for more meta-discussions that I don't see anyone having, and those are the discussions about discussions which get shut down before they even start.

My main question is: Have you been censored and what can we do about censorship on patient forums?

If you are a Lyme disease patient and you want to discuss being censored or being banned online yourself, please leave a comment. You can still be Anonymous or use a username - either way,  I'll post your comment after it clears my spam filter.

If you are a Lyme disease patient and you want to bring up the discussion of censorship in general - especially in what changes you'd like to see in the way discussions online are handled - please drop me a comment.

Let's open dialog up, and see what happens.

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40 First Banned Access

Today when trying to log in to a forum, I received immediate indication that I could not access that forum of which I'd been a member.

It's only been a few short months since I joined.

I have received no PM, no warning email, and no indication of what my specific violation was that led to being banned.

This is all I have to show for it - two screenshots (click to zoom for closer look):

and

Since I'm not entirely sure why I was, in fact, banned, I have to look back and play twenty questions with myself...

There are only two things I can think of right now that might have led to me getting banned:

1) I pointed out, openly, on another forum that posters need to do a better job of producing evidence to support their claims when they are in the domain of conspiracy theories,

and

2) .....

Actually, #1 is the only thing I can think of that could have gotten me banned.

I'm sorry, if that is in fact what happened - I have no way of truly knowing at this point because as I've said - I didn't receive any warning or take-down notice.

On one hand, I am disappointed because I thought what I had to say was important and I was learning some new things while there. I also have been genuinely concerned that those who discuss conspiracy theories so much on support groups do one of two things:

Reduce the credibility of all patients who are already in the challenging position of having to support the existence of Chronic Lyme Disease,

and/or

Create a distraction that serves the purpose of taking people's minds off the issue of solving the Chronic Lyme Disease puzzle itself, by dragging in all these additional topics and potential causes for alarm (either founded or unfounded, depending on the case) about our health, government, scientists, and business.

I was fine discussing at length the role of pharmaceutical companies and lack of ethics in clinical trials without much controversy... it is only when someone got onto the issue of chemtrails in our skies that I began wavering in my ability to respond rationally.

There is - as it's often said - a time and place for everything. And I can listen to someone else's theory about something - heck nearly anything, really - especially if they supply sound evidence from verifiable sources. But they did not, and I pointed this out to them, that and that they would appear conspiratorial to their detractors and the media - only to be told they didn't care.

And well, I very much do care what is thought of Lyme patients as a whole, and so I pointed this out on that very thread and elsewhere. And I got banned.

So that is probably what happened. That's my best guess. Which is kinda sad, because I found this cool three-part series from the Discovery Channel about the issue of chemtrails I was going to post links to in that thread and asked if anyone had seen them, at least to provide evidence on the level of NASA-style research done on chemtrails at Kettering University:

But you know what?  Here's the other hand...

On the other hand, I'm somewhat relieved to be banned. Yes, relieved. Do you know why?

Because every few minutes I was spending copious amounts of time looking up other people's site links about topics completely unrelated to Borrelia and microbiology research - their links, and then other documentation to both support and refute the argument at hand -  and it was beginning to wear me out with the sheer volume of material made available for me to assess.

So now I am freed from feeling compelled to make those assessments, and also free from asking for more solid evidence - though that is exactly what I wanted from them.  More than to dismiss it all, because I rather people find good evidence for me to support their theories about chemtrails or something else first - before someone from the media tries to ask them not only about their pet theories about chemtrails but also about topics more germane to the discussion, like persistence in Lyme disease.

In the end, I just wish it didn't come down to this. There were other conversations I was having with other members there I quite wanted to continue which were right up my alley, about seronegativity in testing and potential forms of transmission of Borrelia in human hosts. This is what I've been researching and continue to do research on, and liked conversing with anyone else who was reading it. I was also helping one new patient with questions - and helping another person get started with creating their own blog on Blogger - and now, I cannot go back there and help them.

I'm very sorry. If you are on that forum and would like to continue chatting with me here, please post a comment and I will read it - at your request I can keep it screened as well, as I screen all comments. You can also email me at CampOther at gmail dot com.

If anyone remains on that forum, and knows which one it is - could you please inform others of my banning? I'd greatly appreciate it, rather than have some members who were concerned about me think something else happened to me. Thanks.

Now that I'm no longer a member there, expect to see more in-depth research and commentary on this blog (provided I'm well enough to keep going at a healthy clip). I will continue to post commentary, research, patent reports, resources, and articles to this site as I can, including the regular Friday Four.

Tune in!

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2 Brief remarks on an older post about forum rules

I am somewhat puzzled that of all that I have posted here thus far, a post on forum posting rules I do not understand is one that continues to get a fair number of hits.

Why do people think this post is so interesting? I think Kary Mullis' Altermune research is way more interesting than that. To each his own, I guess.

Anyway... I've revisited this issue on a forum thread recently, and those who responded seemed to have not read what I wrote in the first place, and responded that I should know why LLMDs need to have their identities protected and know about the film, Under Our Skin.

I do know about why, and I have seen the film. Twice. I had a copy of the disk, which is now in the hands of a therapist who counsels people with disabilities and chronic illness.

Since my point seems to have gotten lost somehow, I will explain what I think about forum posting rules about LLMDs here once more in more abbreviated terms:

It seems to me that it makes more sense to use the term "My LLMD" or "My MD" when posting to a forum about someone giving me medical treatment, and more sense to use the term "An LLMD" or "An MD" when posting about a medical doctor who is not mine. 

Given that there is a small number of doctors who are LLMDs, I do not think that using an initial alone or an initial and a state is adequate privacy - if your goal is privacy. Those who are familiar with doctors who have already been in the spotlight may figure it out, and those who are patients may try to figure out which doctor is being discussed. 

Other mailing lists have used the above approach with great success and it removes confusion over what posters should do.

My rules for my own blog are somewhat modified to allow for mentions in the media and publications.

Alrighty then.


Next post coming up: An overview of Syphilis and vaccines

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3 Forum posting rules I do not understand

Hey folks, hope the past couple of days were good for you - and for those of you who are suffering from Lyme Disease, at least tolerably okay. The holidays can be tough when you aren't doing so well.

I was going to post a post-mortem piece here on the Chicago Tribune article, "Chronic Lyme: a dubious diagnosis", but something else came up I wanted to mention first.

And that is forum posting rules for Lyme patients.

Basically, there is one aspect of them I do not understand nor know how to work with. That, in a moment...

First, I understand the need for confidentiality in sensitive situations. I do. And when it comes to discussing my medical condition and doctor's advice in a forum, I keep our identities confidential when asked. I use a username, and my doctor is "my LLMD" or even just "my MD". When I talk about another LLMD, the phrase I use is, "another LLMD" or "another MD".

I get that. This rule has been used on a number of forums elsewhere.

However, I find it a bit jarring when I post about Dr. Raxlen and Dr. Ryser, when referring to the Chicago Tribune article which mentions them, and the moderator edits my post by changing their names both to "Dr. R".

o-0

Buh?

Given that I discussed both doctors in succession, one paragraph after the other, it might lead the reader to think I was discussing the same doctor - when they are very different doctors with different backgrounds and experiences. And different genders. And different in other ways, too.

I thought to myself, "You could at least have changed one doctor to "Dr. R1" and the other to "Dr. R2", though, I admit, that second one sounds suspiciously like a character from George Lucas' upcoming sequel, "Doctor Droid: The Bot Flies" or something."

I didn't like the post-production editing of my post because I felt the way it was done could lead to confusion.

It confused me even more when I found that in the handful of posts I contributed to that the rule was arbitrarily applied, too.

Dr. Benjamin Luft is an academic physician - but more of an academic researcher, really. Recently mapped 13 genotypes of Lyme. His name got shortened to Dr. L in my post. I don't know why.

Dr. Allen C. Steere is an IDSA doctor, and he diagnoses patients and works in rheumatology, but his name did not get shortened in my post.

And then mentioning Dr. Steere causes issues with other doctors I know of in the Lyme Community who would have the same problem when their names are initialized.

I know of two Dr. S's... at least two. One is Dr. Stricker. Someone else on the forum wrote "Dr. Stricker" and his name did not get shortened.

And I know of more than one Dr. H, too. I think the count is up to, what, three?

But how can I write about them so that people do not confuse them with each other? It's possible other patients will think the wrong thing of the wrong people - or if I'm lucky, hopefully the right thing of the right people?

I think it would really solve the problem if people would determine that one Dr. S is Dr. S1, and another is Dr. S2, and so on. Or wait... would it? Because how do we know from post to post whether or not I've written something that's attributed to Dr. Stricker or Dr. Steere or yet another Dr. S?

Or what if someone else posts about Dr. S? Which Dr. S? One of my original two, or yet a third or a fourth Dr. S I'm not even thinking about?

Crap. That doesn't solve the problem, either. I don't want someone new to the forum to think I am writing something Dr. Steere wrote when it was Dr. Stricker, or vice-versa. They are two very different people.

Heck, I don't think using an initial solves the problem.

There's got to be another way.

*thinks*

Hmmm.

I think it would be best if we did away with initials entirely. Doing so makes it less likely to lead to false attribution by people who are trying to guess which post is about which doctor.

Here's an idea, folks:

1. Have everyone use "my LLMD" or the phrase, "I heard there's an LLMD who does ____" for mentions of an LLMD, unless the LLMD is mentioned in a publicly accessible online source in their own words and that is what you are posting about - for example: an interview with Dr. Stricker on Lyme Disease Research Database, a news article in the Chicago Tribune, a video with Dr. Martz on youtube, a clip of Dr. Jemsek from "Under Our Skin", a book review of Dr. Liegner's book on Amazon, or a publication found on PubMed (e.g. rebuttal letters by Dr. Stricker on IDSA Guidelines). If you're already referring to these things and linking to them, what is the point of writing an initial? The identity of the doctor is right there at the link.
2. Have everyone use the doctor's name when it's a non-LLMD and it is referring to a publically accessible reference to them such as above. Example: "Dr. Sanjay Gupta is the CNN's chief medical correspondent on television", rather than "Dr. G is the CNN's chief medical correspondent on television". Otherwise, use "my MD" or "an MD".

I say this, not knowing a better way to deal with it when it does seem like the rule was arbitrarily applied at a forum I only just joined. If they applied "Doctor Initial" method to literally all doctors, I'd have less trouble with understanding the rule, but if they did, they still need a way to ensure the initialized doctors do not get confused with each other somehow.

Any ideas how to avoid this issue? Short of spelling out all doctors' names?

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