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.

Wednesday, March 21, 2007

Subject Not Yet Beaten to Death

Surprise! The comments from the Chronic Lyme Disease community continue, pleading for "dialogue":
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. Another day without answers, without an effective cure, without healing and most of all without hope.
...

I had hope that lines of communication would be opened, that true dialogue could exist.
There is no "God of Science." As a non-scientist, you are being manipulated by those who promulgate fake "science" regarding persistent Lyme infection to explain vague symptoms in the absence of objective proof.

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 "detoxification" or "chelation therapy") is going to help.

I think these were key words:

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

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 warm, caring, 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.

7 Comments:

At Wed Mar 21, 09:53:00 AM, Blogger MedStudentGod (MSG) said...

I've been compelled to read up more on this disease based on these exchanges. I've seen that there is an increase in HLA-DR4 in some patients with "chronic Lyme disease". There is belief that these patients are predisposed to rheumatoid arthritis and other autoimmune diseases that could be incited by a prolonged infectious agent in their joints. Perhaps this is part of the syndrome that is being experienced - especially since agents aren't being found in their joint fluid after treatment.

 
At Wed Mar 21, 02:10:00 PM, Blogger jmb said...

Sounds like double blind study material to me. Already done?
jmb

 
At Thu Mar 22, 04:59:00 PM, Blogger SeaSpray said...

Dr. Dino - are you saying that Lyme disease is psychosomatic? I am sorry - I am not familiar with the posts that you are speaking of.

Forgive me if I have misinterpreted your post.

 
At Fri Mar 23, 10:57:00 AM, Blogger The Hatchling said...

I think what Dr. D's point isn't denying the symptoms, but more on the lines of denying the diagnosis by the LLMD's and their pseudoscience. The idea that a diagnosis + ABs helps curing is more on the lines of the placebo effect with additional treatment is a secondary issue.

The problem is simply: "What if the LLMD is wrong?" is more of the point (I think).


eh... on rereading some things who knows I might be out in space.

 
At Fri Mar 23, 06:44:00 PM, Anonymous Moof said...

I have some friends ... we're all about the same age, and all female. I have to admit that I look on the subject of alternative medicine with a jaundiced eye, so perhaps I'm not entirely unbiased ... however ...

These girls have some rather serious medical issues, and neither of them trust their doctors. They were describing the things they do to themselves ... drinking potions that sound like something out of an "Adam's Family" recipe book, and which they can barely hold down, giving themselves "purgings" ... and taking enough over the counter health supplements to damage even the most hardy individual.

Meanwhile, they see their physicians for their increasingly strange symptoms, don't tell their physicians what they're doing to themselves on the sly, and then complain that "My doctor never believes me! He doesn't understand what I feel like! He's not helping me! I'm just getting worse!"

Now, I'm not saying that people with Lyme's Disease aren't really experiencing what they say they are, but what I am saying is that cooperation and honesty and perseverance when dealing with a doctor will go a lot further than accusing them all of being arrogant cynics, and then turning to alternative medicines that are more likely to harm than help.

Now, that said - I know enough people who've had Lyme's Disease who don't engage in these dangerous altie activities, who are no nonsense people, have never been hypochondriac, and who have had lasting problems - that I do believe that there really is something going on with them. I don't pretend to know what it is ... or if, in the end, it will even be found to have been related to the Lyme's at all. I just think that an answer is more likely to come if the issue ceases to be an "us and them" battle zone ...

 
At Wed Oct 17, 04:57:00 PM, Blogger Candace said...

As a illiterate ID guy, you get the "good fight" award bestowed on you from me--you came out with swords blazing. Good job.

 
At Mon May 19, 05:57:00 AM, Blogger hima said...

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