Musings of a Dinosaur

A Family Doctor in solo private practice; I may be going the way of the dinosaur, but I'm not dead yet.

Saturday, March 10, 2007

Growing a Thicker Skin

About four months ago, I blogged about a patient -- likely an "altie" -- who subtly but, I believe deliberately, insulted me about my conventional views of Lyme disease. Two days ago I noticed a spike in my traffic. It turns out that someone at HealingWell.com discovered that I do not believe that there is such a thing as chronic Lyme disease, and blogged about it indignantly.

Needless to say, that didn't sit too well with their community. Despite the fact that the Infectious Diseases Society of America has this to say about chronic Lyme disease or post-Lyme disease syndrome:

Following an episode of Lyme disease that is treated appropriately, some persons have a variety of subjective complaints (such as myalgia, arthralgia, or fatigue). Some of these patients have been classified as having “chronic Lyme disease” or “post-Lyme disease syndrome,” which are poorly defined entities. These patients appear to be a heterogeneous group. Although European patients rarely have been reported to have residual infection (or perhaps reinfection) with Borrelia burgdorferi, this has yet to be substantiated either in a large series of appropriately treated European patients or in a study of North American patients. Residual subjective symptoms that last weeks or months also may persist after other medical diseases (both infectious and non-infectious). It has also been recognized that the prevalence of fatigue and/or arthralgias in the general population is greater than 10%.

In areas of endemicity, coinfection with Borrelia microti or the Ehrlichia species that causes human granulocytic ehrlichiosis (HGE) may explain persistent symptoms for a small number of these patients. Randomized controlled studies of treatment of patients who remain unwell after standard courses of antibiotic therapy for Lyme disease are in progress. To date, there are no convincing published data showing that repeated or prolonged courses of either oral or intravenous antimicrobial therapy are effective for such patients. The consensus of the Infectious Diseases Society of America (IDSA) expert-panel members is that there is insufficient evidence to regard “chronic Lyme disease” as a separate diagnostic entity.
apparently a group of patients and or doctors decided that they didn't agree, and so they began an organization called the International Lyme and Associated Disease Society. It is a non-profit organization, with voting membership limited to:
those persons who have earned a recognized Doctorate degree (MD, DO, or PhD) and who have an interest in the care of patients with Lyme and associated diseases and/or are involved in research related to Lyme and associated diseases.
How does one become a Fellow of the Society?
The special status of Fellow of the Society shall be earned by those members who have:
  1. Completed the in-depth workshop on the diagnosis and management of Lyme and associated diseases
  2. Taken the examination prepared by the faculty of the workshop
  3. Demonstrated acquisition of the most up-to-date scientific knowledge as related to the care of patients with Lyme and associated diseases.
A certificate of accomplishment shall be given to members having achieved the special status of Fellow. To maintain the status of Fellow, the in-depth workshop and examination must be taken every two years.
Seems kind of circular. Furthermore, the ILADS Treatment Guidelines include things like this:

New Chronic Lyme Disease Presentations

A detailed history may be helpful for suggesting a diagnosis of chronic Lyme disease. Headache, stiff neck, sleep disturbance, and problems with memory and concentration are findings frequently associated with neurologic Lyme disease. Other clues to Lyme disease have been identified, although these have not been consistently present in each patient: numbness and tingling, muscle twitching, photosensitivity, hyperacusis, tinnitus, lightheadedness, and depression.

Most patients diagnosed with chronic Lyme disease have an indolent onset and variable course. Neurologic and rheumatologic symptoms are characteristic, and increased severity of symptoms on wakening is common. Neuropsychiatric symptoms alone are more often seen in chronic than acute Lyme disease. Although many studies have found that such clinical features are often not unique to Lyme disease, the striking association of musculoskeletal and neuropsychiatric symptoms, the variability of these symptoms, and their recurrent nature may support a diagnosis of the disease.

And this:

Physical findings are nonspecific and often normal, but arthritis, meningitis, and Bell’s palsy may sometimes be noted. Available data suggest that objective evidence alone is inadequate to make treatment decisions, because a significant number of chronic Lyme disease cases may occur in symptomatic patients without objective features on examination or confirmatory laboratory testing.

Factors other than physical findings, such as a history of potential exposure, known tick bites, rashes, or symptoms consistent with the typical multisystem presentation of Lyme disease, must also be considered in determining whether an individual patient is a candidate for antibiotic therapy.
And this:

Seronegative Lyme Disease

A patient who has tested seronegative may have a clinical presentation consistent with Lyme disease, especially if there is no evidence to indicate another illness.

Although many individuals do not have confirmatory serologic tests, surveillance studies show that these patients may have a similar risk of developing persistent, recurrent, and refractory Lyme disease compared with the seropositive population.
So basically, if a specially trained Lyme doctor (training available only from other doctors with the same training) says you have Lyme, that's all it takes to make a diagnosis. I wonder whether some of these folks would be diagnosed with "heavy metal toxicity" if they happened to consult one of the mercury-poisoning adherents instead of an "LLMD." Careful reading of the ILADS site reveals many other features consistent with Orac's definition of "Altie." (Edited: check out the definition of a fad diagnosis at Quackwatch.)

None of which, frankly, is my point. They -- the chronic Lyme community at HealingWell, ILADS and elsewhere -- are not going to change my mind, and I'm not going to change theirs. I accept that.

What surprised me wasn't so much the name calling ("moron"; "bully"; "turd"; "tool"; "A-hole"; "stupids" [sic]; "coward"; "Dr. Stone Age"; "Dr DinoSOUR"; "angry ugly old man") but how much it hurt.

I know. It's just the internet. I'm anonymous. They're anonymous. It's only words on a screen. What's to be hurt about? Chill. Why should I give a moment's thought -- much less get all mopey for an evening -- over comments by people who not only don't know me, but haven't bothered to read more than one post on my blog (and somehow succeed in taking that out of context, too.)

Here's why: I refuse to brush them off as "crazies", "alties", "nut-jobs" and so on. That kind of labelling is what allows us to de-humanize people, objectify them, and render their words "not worth getting upset about;" ie, not paying attention to. Even though I know I will never meet them face to face, I remain acutely aware that most of them have suffered -- often at the hands of my colleagues. It isn't rational, but I feel badly about that. I understand that many of them are too deeply invested in the idea that B.Burdorferi is the cause of their suffering to ever really hear what I'm saying, but that isn't as relevant as you might think. People are in pain, and I can't help them. They won't even accept my empathy, seeing it instead as condescending and insulting. That's what hurts.

So I did what I've learned to do when I feel badly about something I can't do anything about. I waited. I got a good night's sleep (at last.) As usual, things were better in the morning. They almost always are.

21 Comments:

At Sat Mar 10, 11:20:00 AM, Blogger Sid Schwab said...

In the largest context, it's disturbing because that's pretty much what all discourse has become in this country. Which is why I truly fear for our future. In the smaller sense, with regard to the Lyme-doctors' club, I think there's a Woody Allen joke in there somewhere...

 
At Sat Mar 10, 11:59:00 AM, Blogger Lynn Price said...

Ah crap, it's stuff like this that gives alternative users a bad name. Acting like foolish two-year-olds does nothing to lessen the chasm between medicine and alternatives.

Docs don't have the luxury of going against scientific proof. What kind of sense does this make? It's their job to follow the microscope, test results and data; not get in touch with their esoteric side.

On a personal note, I hate the term "altie" because it's used so casually and lumps together anyone who integrates non-allopathic methods of healing with allopathic medicine. It's no better than those who call docs every name in the book.

I've researched my butt off and have the utmost respect for science. On the other side of the coin, there's a lot we don't know about the healing abilities of the human spirit, and it serves no one's purposes by creating a dividing line between science and alternatives. Guess I'm an "integratie."

 
At Sat Mar 10, 04:21:00 PM, Blogger Cathy said...

Well I have also JUST been betrayed by a blog friend, so I sort of know how you feel.

Your right..It DOES hurt!

 
At Sat Mar 10, 05:17:00 PM, Anonymous Anonymous said...

Shame on them for name calling!

BTW, the description of chronic Lyme disease reminds me of some other things - chronic fatigue, fibromyalgia. Hmmm...

 
At Sat Mar 10, 07:52:00 PM, Blogger Bohemian Road Nurse... said...

I am so sorry you had to endure name-callers. Some people become so angry when they see words they don't like that their listening abilities completely halt---thus causing them to miss out on the point of the discussion. Discussion and debate can be enjoyably challenging when people use it to share ideas and learn new ideas rather than do the knee-jerk reponse and call each other childish names...

 
At Sat Mar 10, 09:02:00 PM, Blogger Dr. A said...

I've had the verbal barbs directed at me as well. Almost quit blogging altogether last month. You're right. You think words don't get to you until it happens to you.

I have an entire rant on the state of political correctness in this country and the current culture of people looking to be offended by anything and everything. I'll leave that for another day.

 
At Sat Mar 10, 10:11:00 PM, Blogger D.P. said...

Great post--this is why I continue to read your blog. BTW, your son must be proud of your choice of words . . .

 
At Sun Mar 11, 03:14:00 AM, Blogger jmb said...

It is a great post, on two levels. The discussion of Lyme disease and the dismay about personal attack in the blogosphere.
It put me in mind of some vituperous attacks on the medical profession in general at Dr Michelle Tempest's blog where she is helping in the fight against the new ioditic system of junior doctor training in Britain. Not personal attacks as you are experiencing but general attacks on the profession, with absolute nastiness. You and Dr A can commiserate together.
Regards
jmb

 
At Sun Mar 11, 06:16:00 AM, Blogger Dr Dork said...

Fair enough that opinions differ on any matter, but don't take puerile anonymous insults personally.

Easier said than done, of course.

Demeans the source of vitriol, not yourself.

Were there dinosaurs in the Stone Age?

Kind regards
Dork

 
At Sun Mar 11, 10:55:00 AM, Blogger MedStudentGod (MSG) said...

Dino,

I know these kinds of attacks are painful. However, look at the attacker - Anonymous. Hard words from cowards. They remain veiled behind that silly title while dispensing all sorts of bilious half truths, untruths, and slanders. I'm sorry that you've been targeted for having the proper view on this subject matter. As medical "professionals" we *must* follow medical evidence. Forgoing these will lead to true quackery and the return of alchemy.

Keep well and remain steadfast in the knowledge that you insire future doctors to remain as open and intelligent as you.

 
At Mon Mar 12, 02:33:00 AM, Blogger View from the Trekant said...

It's a difficult balance to keep - On the one hand, there are answers that seem pretty self-evident that patients will reject. On the other hand, there is still so much that we don't know about medicine; we have to keep our humility about us.

I admire your diplomatic approach Dr. Dinosaur.

For most patients I also don't buy into chronic Lyme any more than I bought into chronic candidiasis, wide-spread heavy metal poisoning, chronic EB, many so-call nutritional deficiencies etc. etc. etc. Next month there will be a new diagnosis that will be the fad "explain-all." Oddly this new diagnosis will explain away vague aches and pains and fatigue just as the preceeding ones claimed to. No scientific data will be produced. The adherents of the next fad will be just as indignant as those of this one.

However, I've had some patients over the years that just do not fit into any neat category, and yet clearly have some disorder (say of clotting for example). Just because my consultants and I can't give the patient a name for the disorder, does not mean it does not exist.

Like your blog - Echo Doc

 
At Mon Mar 12, 02:25:00 PM, Blogger TBTAM said...

#1:
I am often taken aback at the vitriol that is spewed across the blogosphere, and sorry to hear some of it has made it onto your blog.

You know, you CAN delete their comments. It may not take away the bad feelings, but will keep them from stirring up more from other readers.

Best

 
At Tue Mar 13, 09:18:00 AM, Anonymous Moof said...

Dr. Dino, I'm sorry you're going through this sort of thing. I understand the feeling ... as I've also hit on a few "lightning rod" issues in the past.

I wasn't aware that Lyme's Disease had become such an issue. Here in New England where so many hunt and spend time in the woods, Lyme's is common. Some people seem to recover completely, and others just don't - including some who are not normally prone to being focused on their health.

I certainly don't have an answer, and honestly barely have an opinion, since I haven't experienced it from either side of the fence.

I don't think medical science has made all of its discoveries yet ... but I do think it's more likely to make more discoveries when people who believe they're afflicted with something out of the ordinary cooperate instead of self-diagnose.

 
At Tue Mar 13, 12:52:00 PM, Blogger Voter Mom said...

The internet enables a lot of bad behavior, doesn't it? Name-calling bullying ... bleh.
It definitely hurts. Sorry you were a target for it.

 
At Wed Mar 14, 02:04:00 PM, Blogger gamon8 said...

Sorry that you experienced name-calling. That's pretty childish.
I have to comment though that some people with Lyme disease are at the end of their rope because they have been "jerked around" by doctors that should be helping them.

I for instance had a positive Lyme test by CDC standards - meaning a positive EIA and Western Blot test - and had an Infectious Disease doctor tell me that I did NOT have Lyme because it does not exist in my part of the U.S.

You can surely understand why Lyme patients get defensive when we hear that Lyme or Chronic Lyme does not exist. It gets very frustrating because all we want is our normal life back.

Also, co-infections can make the initial treatment for Lyme unsuccesful and therefore, symptoms return, if they ever left in the first place.

Someone posted that "we are medical professionals and must follow medical eveidence" but that is not happening for a lot of Lyme patients. We go misdiagnosed and untreated for too long before someone actually takes an interest in our health and helps us.

I have no doubt that the ID MD that I saw is very intelligent and has helped a lot of his patients in his area of expertise. BUT, he DID NOT help me, nor did he try. He told me time would make it all better.

Thank God for ILADS and their research. Antibiotics are not the only route to take when killing these bugs. These doctors should not be mocked. They are helping patients get through a very tough illness.

Whether Chronic Lyme exists or not is not the question. The question is how are we going to help the patients that are suffering? Are doctors going to continue to wish their patients never return after an initial visit or are they going to investigate and get to the true cause of the symptoms?

 
At Mon Mar 19, 05:35:00 AM, Anonymous Anonymous said...

we've opened a new lyme disease online support group. you should check it out http://www.mdjunction.com/lyme-disease
sincerely,
Ann

 
At Tue Mar 20, 01:20:00 PM, Anonymous graceannrose said...

Dear Dr. Dinosaur & friends,

I am also sorry that Dr. Dino experienced name-calling on his blog and that it upset him as much as it did.

I have been reading some of the replies and seen that more than a few people consider that the fact that many of us from Healingwell remained anonymous was cowardly.

I remained anonymous at the time I posted as it was one of the options available. It was convenient for me. Even on the Healingwell forum I use my screenname instead of real name to protect my privacy both as a patient and consumer. To make the decision to remain anonymous as a means to protect privacy is a legitimate choice and I don't think it should invalidate the opnion of the blogger in the least.

To satisfy those critics, this time I have signed on and made my comment with my username. I don't see that it makes a great deal of difference.

The comment that I made began:
"Dear Dinosaur & medical professional friends,

I'm sorry that you felt insulted by your patient."

I addressed the immediate issue of the post directly in my opening statement. As for the criticism that the blog was not read in context or entirety ... I can only say that this is an unfair assumption and it was not true.

All I can say now as I read the blog dated March 10th 'Growing a Thicker Skin' is that I must admit that I am beyond disappointed, dismayed and frustrated by the response of Dr. Dino and the other medical bloggers to the concerns of patients with Lyme Disease and Lyme-like illness.

Personally I feel that there is more than enough science behind the existence and persistence of the spirochetal bacteria that causes this disease including such technologies as dark-field microscopy.

However, I am not a scientist and so once again as a patient I must bow to the God of science. There is nothing more to be said. I must accept that Dr. Dino, myself and my Healingwell friends can only agree to disagree.

I am sorry Dr. Dino but for you this means nothing more than one slightly perturbing everning and a fresh, bright start in the morning.

For me, my friends on Healingwell and other suffering patients it means waking up to yet another day of constant pain or fatigue. Anoher day without answers, without an effective cure, without healing and most of all without hope.

I do not want to hurt or cause offense to anyone. I did not call names and on our forum I was the one who requested that we all respond to your blog in a most dignified, respectful manner.

I had hope that lines of communication would be opened, that true dialogue could exist.

Quite simply, and with respect I say that empathy is good, it is necessary, it is appreciated ... and it is not enough.

Sincerely yours,

Ms. Anna Duffy
graceannrose from Healingwell.com

 
At Tue Mar 20, 03:40:00 PM, Blogger #1 Dinosaur said...

Anna: I recognize that you were the one calling for restraint and respect, and I appreciate it. Also, please note that it was my commenters and not I who castigated you and others for posting anonymously. I happen to understand that there are times when it is simply more convenient.

My point is that you -- and suffering patients like you and your friends at HealingWell -- are being disserved by LLMDs and others who claim that the answer to your problems is "chronic Lyme disease" (or "reactivated mono" or "heavy metal toxicity") and that pumping you full of antibiotics for months on end (or subjecting you to "liver flushes" or "chelation therapy") is going to help. I believe a good part of your suffering is the lack of an answer, and as such, anyone who claims to have one for you (like your friendly, understanding LLMD) becomes a savior. I wonder if by providing that kind of comfort, understanding, respect and empathy (but not the antibiotics) I could produce similar results for patients with similar symptoms.

 
At Fri Mar 23, 12:05:00 PM, Anonymous graceannrose said...

Dear Dr. Dino,

Yes, here I am still beating the subject to death :P Heh heh.

Thank you for your response. I guess you're right, my term the 'God of Science' was probably a bit dramatic.

I hope you don't mind if I take a little more space to tell you my story ...

My own family doctor takes this approach that you suggest with me of providing 'comfort understanding respect & empathy'.

I first found that nasty, engorged, embedded tick and the circular rash last Memorial Weekend. (I remember joking to my folks at a family picnic that I might have Lyme Disease. We thought that was hilarious.)

Anyway, my doc. is great, everything you describe. She felt it was not a rash to be concerned about. She presribed me a two week course of doxycyclene (200 mg) per day.

She is a good doctor. She tested me for every disease under the sun including West Nile & Syphilis :P(My Western blot from Quest Labs came back negative). She promised me that we would get to the bottom of things. She presecribed me a mild anti-depressant.

In the meantime, my health continued to decline alarmingly (to me!). I became so fatigued I could barely make it through the day. I was experiencing the kind of insomnia where you don't sleep for two or three nights in a row. (Not great for one's mental health by the way!) I started having severe, prolonged panic attacks. I could barely drive home at night bcos I was so exhausted.

After all the tests were done, my doc. was pretty much at the end of the road as far as answers.
She remained caring but refused further treatment. She hoped that I would feel better soon. In the meantime, despite her assurances that everything would be okay, I did have to quit work because I was so ill. I had to move back in with my folks. I had lost so much weight and I had no energy to cook for myself, much less appetite to eat.We just couldn't figure out why I appeared to be wasting away for no reason :P

Anyway, I'd had no health problems before the darned tick, so I pretty much felt I better see one of these LLMD guys before I either lost my mind or died. So I did.

Yes, he was sympathetic to me but, hey! I already had a nice doctor, good family and friends; there were a ton of people around me giving me support and attention! I really didn't need to drive that far or pay that much for understanding, respect or empathy.

As you said, I thought he'd 'pump me full of antibiotics'. Instead he explained that I could regulate my dose, increasing it slowly as I could tolerate depending on the intensity of the Jarisch-Herxmeier reactions I was having.

Over time, the severity of the 'herx' reaction decreased, and I could tolerate a pretty good dose of the antibiotic. I have cycled through quite a few of different antibiotics now and am actually feeling quite good. Fatigue and insomnia are my remaining symptoms. It's actually bearable as long as I pace myself each day. After I began treatment, I started putting the weight back on. I was able to take light walks and eventually started working part-time again. I'm considering full time now - maybe in a month or two.

I've never done any 'liver flush' or chelation therapy' Plain old antibiotics for me all the way.

My LLMD thinks I should be symptom-free and off antibiotics fairly soon. So it has taken me about a year to recover. I went back to my doctor for a check up last month and she was very pleased and encouraged by how well I was doing.

I think it's hard for her to accept that I went to another doctor for help but I just had to do what I felt was right for me to get well. It was nothing personal.

Her understanding, respect and empathy was fantastic, but just as in the case where a patient might have tuberculosis or some other infection, I feel that I needed those antibiotics to get well.

Could my body have healed itself in time without the antibiotics? If I had just gone to my regular doctor every now and then for a pep talk, would it have cured me?

Hmmm ... all I can say it that I am glad that I didn't take that risk. It's kind of scary to think what might have happened if I had just let nature take its course.

Anyway, again I want to thank you for your reply to me. It does make me feel like we got some dialogue going.

I am getting my life back, slowly, and I belive that it's due to extended antibiotic therapy. I think my story is fairly typical and that's why along with most other people on the Healigwell forum I generally would advise anyone who thinks they have a tick-borne illness to go ahead and see a specialist in the field.

Okay, okay, I'm done!

I like your blog Dr. Dino. It's very interesting, thoughtful and well-written. Thank you for giving so many of us a chance to air our point of view in such um ... depth :D

Best regards,

Anna

 
At Fri Feb 08, 11:16:00 AM, Anonymous lebowski said...

"I know these kinds of attacks are painful. However, look at the attacker - Anonymous. Hard words from cowards. They remain veiled behind that silly title while dispensing all sorts of bilious half truths, untruths, and slanders. I'm sorry that you've been targeted for having the proper view on this subject matter. As medical "professionals" we *must* follow medical evidence. Forgoing these will lead to true quackery and the return of alchemy."

"cowards , silly title ,alchemy" etc etc .. do u still wonder y we attack BACK with name calling ?..

who says medicine is on idsa side by the way ?? only someone who havent read all those scientific papers supporting chronic and persisting lyme can say this and as if he is aware of the scientific facts of the subject .. ok another name now , idiot pretenders .. liked it ?

if i dont remember wrong that headidiot wormser agrees on the ACA lesions and eouropen chronic lyme .. this means ( explanation for retards ) the term " chronic lyme " is not created and only being used by the ilads side of MEDİCİNE and SCİENCE ..

 
At Fri Dec 04, 12:03:00 AM, Anonymous Alastair said...

What do you call a medical condition that fails to respond to treatment - symptoms vary, seeming to lessen but not really healing entirely, always there to some varying extent ? ...
... most doctors term that a chronic condition.
If Lyme spirochaetes are not killed in the cyst form, then they will return once antibiotics are stopped.
Some people call this a recurring infection - in a similar way to malaria.

There is no point treating Lyme disease with antibiotics whose action is against cell walls - these bacteria lack cell walls.
The late Dr Lida Mattman was an expert in the true meaning of that term, on Cell wall deficient bacteria, including Lyme.
If you do not like someones name for their long term lyme infection then make up your own name for it, but try to avoid total denial when no matter who writes replies here, there are many many many more people suffering symptoms long term - maybe some are treated with inappropriate antibiotics - and many more that have recovered nearly 100% through antibiotic treatment that has been successful ony when extended to 12-20 months, in total contradiction of the fallible IDSA guidelines. Bad science caused a controversy in the UK about MMR vaccine, even though that research was based on only 8 subjects with no proper science involved. IDSA has members who have published lies and faked science on Lyme. sometimes the world is not a pretty place full of honesty - it is nice to approach the world hoping that all science is good science, that bodies like the IDSA are to be trusted, but this is not realistic.

 

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