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.

Monday, November 13, 2006

The Insult

I have a very thick skin. I rarely take offense at things patients occasionally say to me, because most of the time I understand that they don't mean to insult me. But the other day I heard something that left me speechless (truly an unusual event) with indignation.

A man in his late 20's presented as a new patient for treatment of his asthma. As is my usual practice, I took a full medical history. The patient, who did most of the talking, was very self-assured as he related his history. For example, he didn't want Ventolin because he was afraid it would give him heart palpitations, but was insisting on Advair for treatment of his acute bronchospasm. (Quick explanation: Advair is a long-acting bronchodilator/inhaled steroid combo, NOT appropriate for use as a rescue med for asthma.)

In the Past History portion, he related a history of back problems and a course of treatment for "chronic Lyme disease" (a condition that does not exist, according to all reputable Infectious Disease experts.)

At this point, I should relate that I am quite tolerant of these kinds of announcements. My feeling is that immediately and spontaneously holding forth on the ridiculousness of useless medical therapies is not particularly conducive to good rapport-building with a new patient. When asked, of course I share my opinions; but when patients are merely relating what they've already been through, I just listen.

He went on to tell me that he was still in treatment with a specialist: an LLMD. Did I know what that was? he asked.

Unlike many other physicians, I have never been afraid to say, "I don't know." I look at it this way: who do you find more impressive: the person who tries to fake it when they don't know something, or the one who comes straight out and admits it? For what it's worth, many patients have been very impressed with me for being able to say, "I don't know."

I had never heard of an LLMD, and I told him so without hesitation. It was his answer that floored me:

"Lyme Literate MD."

So now my refusal to believe the woo of Lyme rendered me "illiterate!" I was too startled to say anything other than, "Oh."

I talked him into a Xopenex prescription for his asthma (he flatly refused any form of albuterol) and somehow managed to contain my fury until after he left.

I hope he doesn't come back.

59 Comments:

At Mon Nov 13, 05:57:00 PM, Blogger Dr. K said...

I am with you on the "I don't know" thing. It drives me nuts when someone guesses at answers to questions or, worse, answers the question without really answering the question.

 
At Mon Nov 13, 07:36:00 PM, Anonymous jeff barson said...

Hi Dino,
I got half way through your post and when hit with LLMD that I didin't know I googled it. Seems there's actually a definition here: http://acronyms.thefreedictionary.com/LLMD

Seems like a doc who's given himself two extra letters that caught on.

Back to lurking.

 
At Mon Nov 13, 07:47:00 PM, Blogger #1 Dinosaur said...

Thanks for pointing that out, Jeff. I took the liberty of going to that site and adding to the definition:

"Self designation of ignorant medical professionals unwilling to accept the proven diagnostic and treatment modalities for Lyme disease."

(Can you tell I'm still pissed?!)

 
At Mon Nov 13, 08:06:00 PM, Anonymous Anonymous said...

So I'm confused. The CDC lists lyme disease: http://www.cdc.gov/ncidod/dvbid/lyme/index.htm

I'm not trying to offend, but trying to understand why the CDC lists it, vets vaccinate dogs for it, and yet you say it doesn't exist. I have a feeling I'm really missing something.

 
At Mon Nov 13, 08:45:00 PM, Blogger #1 Dinosaur said...

"Chronic" Lyme disease doesn't exist.

Primary, secondary and tertiary Lyme disease all exist, manifested (respectively) by the ring shaped/bullseye rash erythema migrans and a flu-like syndrome, Bell's palsy and heart block, and aseptic meningitis and a polyarthritis. Each responds to antibiotic treatment of up to 4-6 weeks max (only one course) and supportive care for whatever stage it's diagnosed in.

"Chronic Lyme disease" or "reactivated Lyme disease" is used as a wastebasket explanation for things like unexplained fatigue and other vague symptoms. It's treated with months on end of intravenous vancomycin (a very powerful antibiotic best saved for other highly resistant germs) and various other kinds of woo.

 
At Tue Nov 14, 02:56:00 AM, Blogger garbage said...

Why did he leave his old doctor? I can't help think that there are other issues involved. What did you read between the lines? Does he have a personality disorder? Is he having issues in his life?

Unfortunately, there are people who adopt the sick role as a way with coping with life, but then isn't part of a doctor's job to try and nudge them gradually into healthy behaviour?

 
At Tue Nov 14, 05:42:00 AM, Blogger Flea said...

Or you could fire him, Dino. That's okay too.

best,

Flea

 
At Wed Nov 15, 12:41:00 AM, Blogger Dreaming again said...

oh my gosh!!!!!!!!!!

I'm in shock!!!! Horrified.

Dr. Dinosaur ...can I give you a cyber hug ... you deserve it.

Geesh.

I mean, the asthma stuff is one thing (you'd get the same fights with me *grin* even xopinex makes my heart race!!! Cripers ... I've been taking Atrovent and Advair for YEARS and THEY still make my heart race! ) But ... I do have an albuterol inhaler I have on hand.

But the llmd ..that's just plain arrogance!!! How dare he!

*hugs*

Here ...have a cup of coffee!

 
At Thu Nov 16, 12:57:00 AM, Blogger shrimplate said...

Aren't delusions wonderful...

 
At Thu Nov 16, 12:58:00 PM, Blogger The MSILF said...

Aaaaaaaaaaaaaaaaack! I just went the "chronic Lyme disease" rounds a couple of months ago with my aunt, who insisted and swore that her friend had it, and the friend said that only special doctors know about it! At that point, I wasn't totally sure that there wasn't something like that, though I thought it would more likely be immune mediated and not real bacteria (there is no Lyme in this country so it's very academic for me), so I didn't argue that hard, even though she swore the friend got antibiotics.

Only when I went to really look did I find the whole C-O-N-S-P-I-R-A-C-Y of doctors to deny the existance of this chronic disease that needs antibiotics indefinitely.

That said, it did get me to go back to some lecture we had from some guy here who described the pathophysiology of CF/fibromyalgia etc - he had this really interesting theory about chronic stress and the neurohormones from that making the autonomic system more reactive, which both comes from and contributes to the anxiety sensations (palpitations, shaking, weakness, sweating, dizzy feeling, orthostatic hypot.).

He had really good documentation on how exactly being both unfit and stressed led to labile cardiovascular responses to sympathetic signaling, which would cause a little anxiety to cause a rapid pulse, drop in blood volume from chronic catecholamine stimulation, LV EDP going down as a result, which reduces immediate effort tolerance. Hyperarousal makes all the symptoms much more noticed to the person too.

Then - it's always described as "post-infectious" - he laid out very clearly the physiology of that - that you have a person who is usually not in great shape, under great stress, they get a mild infection or whatever, and you add that stress and the few days of lying down to already pretty bad cardiovascular and autonomic tone, which also leads to some volume shifting, and then they start behaviors of resting all the time, which loses them even more muscle mass and CV tone, and them feeling worse, and also to them paying a lot more attention to all the "symptoms."

He had the whole thing very well documented with lots of historical studies as well as modern ones, from basic science to very high tech immunology studies (stress and Th1 Th2 balance), from all these times when it was called different things and thought to be different things (epidemic neurasthenia, benign myalgic encephalitis and tons more) and how they all pretty much fit. He also had a lot of "myth breakers" - like the studies that document that certain antibodies to whatever virus is in fashion as the culprit actually go up in everyone in stress states as non-specific reactions.

Anyway, I remember being very impressed about how he went through and tried to knock the pseudoscience out, yet account for the symptoms and pathological processes without just saying it's out and out psychological, but rather a real, stress caused collection of phenomena. His slides and notes are one of the few things I kept from the preclinical studies.

I've used this example a lot to explain to people what it is - it gives you a medical model that you don't have to blame them, and also you can logically show them how important exercise and getting up and doing stuff is, and why they will feel bad while they do it, without the tendency that we often (or at least I often) have to get impatient with them. It has helped me a lot to explain to them what is going on in their bodies, without directly having to blame their head.

As for your patient, could you just say to him something like, "Well, maybe, then, you would be happier with a different practitioner?" Nicely, but honestly...or tell him you are an SLMD (Science Literate...)?

 
At Sat Nov 18, 10:10:00 PM, Blogger Long Island Nurse said...

Once they start with the complaints about chronic fatigue, chronic lyme disease, morgellons, and chronic this-or-that, I roll my eyes and know I'm dealing with a nut.

Yes, sometimes even nuts get sick. But usually, they're just nuts.

Thankfully, I only have to deal with each individual nut on a limited basis. I'm surprised you didn't discharge this guy from your office, permanently.

 
At Tue Feb 06, 11:05:00 AM, Anonymous Anonymous said...

Well this totally explains why I've been too sick to work full time, unable to walk somedays and suffering with disturbed vision, weakness, dizzyness, shitting blood, getting stomach pains, and the NHS aren't doing anything.
Maybe if you started to listen to your patients there might be some progression in medical science.
Why the hell would a happy, intelligent, busy, popular, motivated individual want to make up symptoms so doctors can ignore them?

 
At Thu Mar 08, 09:50:00 AM, Anonymous Anonymous said...

You doctors sound like a bunch of real A Holes. You should have all your licenses revoked....

 
At Thu Mar 08, 10:10:00 AM, Anonymous Anonymous said...

You didn't even know there was a controversy about Lyme and your patients are nuts. I would rather be nuts than incompetent.

 
At Thu Mar 08, 10:29:00 AM, Anonymous Anonymous said...

Dear Dinosaur & medical professional friends,

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

The term 'Lyme Literate' is not a term medical professionals generally assign to themselves.

It's an informal term patients use for doctors who are considered knowledgable about Tick-Borne Illnesses and their co-infections.

Just as one would see a cardiologist for a heart problem, one might see a specialist to help diagnose & treat a Tick-Borne infection.

Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress.

Due to unreliabaility of blood tests, diagnosis of Lyme or other Tick-Borne illness should be clinical. However, it is possible to be tested for these illnesses by a reputable lab such as IgeneX in Palo Alto, CA.

For anyone who wishes to learn more
you will find Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at

http://www.ilads.org/burrascano_0905.html

There is a lot of great literature about Lyme Disease for the general public. I recommend a book "Everything You Need To Know about Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

With respect and best regards to all of you,

 
At Thu Mar 08, 10:59:00 AM, Anonymous Anonymous said...

First of all, it seems somewhat unprofessional to discuss your patient's appt. on an on-line blog. Is it no wonder that so many of us mistrust doctors these days? Secondly, I'd recommend that you purchase a medical textbook called "Cell Wall Deficient Bacteria." Over a hundred years ago Sir William Osler said, "To know syphilis is to know medicine." As you seem to be unaware, borrelia is a spirochete infection as is syphilis. It can quickly disseminate through the blood stream and literally drill into tissue, including the brain, the heart. Borrelia takes several forms, including the cyst form. It can lay dormant for decades, and reappear at times of stress or other disease. It is frequently misdiagnosed as MS/Lupus/ALS and the infamous, fibromyalgia (which all lyme patients know is borrelia). Stay tuned for an upcoming ABC News Primetime Medical Mystery show on borrelia. Also, stay tuned for a documentary to be released this summer, entitled "Under Our Skin." You can remain ignorant and disparage your patients and LLMD's, but the truth is that lyme is at epidemic proportions, not only in the US but all over the world. The sooner you open a book, your mind, the sooner your patients will get the respect and old fashioned "dinosaur" medicine they expect and deserve. It is no wonder that we are running to LLMD's because dinosaurs go extinct for a reason. LLMD's are angels in white coats and among the most courageous people I've ever had the pleasure to know. Read, learn, and do no harm.

As for the nurses and other professionals who responded against LLMD's and chronic lyme, why don't you take a walk in the brush next weekend and check back with us in about two years. You will be singing a different tune, no doubt. You will find out, though, that your dog will get better diagnosis and treatment for lyme than you will, and then you will seek out an LLMD as so many of us have.

 
At Thu Mar 08, 11:32:00 AM, Anonymous Anonymous said...

MDs that do not take the time to study and understand Lyme and the co-infections and are not willing to continuously further their knowledge about all conditions are the ones that cause Lyme to become Chronic.

A 4-6 week course of abx may be sufficient if there is indeed a noticeable bulleyes rash and treatment begins immediately. But with so many 'species' of the bacteria, the 'typical/standard' bullseye rash is not always present or noticed. If a patient is sick with the beginning 'flu-like' symptoms, do you really think that they are up and awake looking at their body?

Infectious Disease doctors have many other types of 'infections' to learn about. It is the LLMD that has taken the extra time (years) to understand the behavior of the bacteria of tick-borne illnesses. How can you possibly know more about Lyme disease that the doctor that has devoted much of life to learning about it?

I hope that you will consider being more open-minded about all health conditions. Patients respect a doctor that is willing to investigate and learn more.

Just to read the comments posted here that 'patients are crazy' tells me a lot about how well you listen to them. Sir William Osler also said 'If you listen to your patients long enough, they will give you the answer'

I understand that you need to vent just as all of us do but the way that much of this has been presented seems very unprofessional.

 
At Thu Mar 08, 02:11:00 PM, Anonymous Anonymous said...

Typical of many MD's to have this attitude but disturbing that any Doctor or Nurse would label a patient "Nuts" who comes into their office talking of any chronic disease.

Anyway folks, the bloggers name and blog title 'Musings of a Dinosaur' say all that needs to be said about this so called "M.D."

 
At Thu Mar 08, 03:35:00 PM, Anonymous Anonymous said...

If 4-6 weeks of antibiotic therapy is always sufficient in treating Lyme, then why did I break out in a full-body EM rash after finishing two months of doxycycline? (For pictures of my multiple EM rashes, as well as swollen lymph nodes and petechia, go to http://www.lymeanalysis.zoomshare.com/1.shtml/Lyme%20Lesions; pay special attention to the "leopard arm" photo) This, of course, was followed by the return of my stiff neck, "flu," and joint pain and swelling. Would that not indicate the disease was once again disseminating? Do such symptoms qualify me as a "nut"...or am I crazy to think that continued antibiotic therapy might just be necessary in some cases, as indicated by my obvious previous treatment failure?

 
At Thu Mar 08, 03:43:00 PM, Anonymous Anonymous said...

hi , i m one of these nuts .. this nut wonders something ;
what if something happens and it is proven so good that all the white coated stupids can understand that the cell wall def. bacteria is capable of causing ms , lupus , anxiety , depression , chronic fatigue , fibro and etc ? what will be the worth of ur profession liciences ? will a 50 years old " old knowlaged " dr go back to his school ? who is gonna be his teacher there ? a nut llmd maybe ? how much will that lupus , fibro etc old fashioned dr will earn after that happens ? .. what will be the credit of all these symptom relivers ? .. maybe the anwsers to these questions scares u cowards so much that u prefer to ignore that lyme problem .. close ur eyes walk bye and dont look back and u ll be safe , dont u stupids ..

 
At Thu Mar 08, 05:28:00 PM, Blogger #1 Dinosaur said...

First of all, let me extend a warm welcome to my blog to all my admirers from HealingWell.com. I am sorry for those who were offended by my comments, but 1) the patient involved has had certain identifying features altered to protect his anonymity, and 2) I realized after the fact that the way he discussed his Lyme treatment was in fact intended to goad me. This was the thrust of my post.

For the record: Like 95+% of the legitimate medical community, I do not know of any credible medical evidence for the existence of "chronic lyme disease."

For the record: I do not believe you folks are crazy or nuts; a commenter used those terms. I do not.

For the record: I think there is a heterogeneous group of patients suffering from poorly defined symptom complexes which include fatigue, pain, skin rashes, joint pains, sleep disturbances, headaches, anxiety, depression and other neuropsychiatric problems who are suffering and whose diagnosis is elusive. The MSLIF (see comment above) offered a fascinating construct of the role of stress and neuroendocrinology to postulate a mechanism for some of these, though of course the model is still very incomplete at this time.

As a group, I get the sense that you are (or at one time were) desperately seeking help, and, after having failed to find it through "usual" medical channels, found some relief in the diagnosis of "chronic lyme disease", with some symptom abatement with "treatment." About 15 years ago, though, exactly the same set of symptoms, rashes, chronic fatigue, etc. was attributed to "reactivated mono." Over the years, some have also used fibromyalgia, MS, lupus and various other infectious etiologies to do the same.

I think at some point, the idea of "an answer" becomes more attractive than "we still don't know", even if there's little solid science to support it.

For the record: I think as a group you have been failed by the medical community. Perusing HealingWell.com I see the pain caused by callous and uncaring doctors and nurses you have encountered over the years. (It is coincidentally ironic that although you call me a turd, a tool and an A-hole while calling for my demise -- or at least the revocation of my license -- my actual patients regularly tell me how grateful they are to finally have found someone who will listen to them. [Me, that is.])

For what it is worth: on behalf of the medical profession, I am sorry we have failed to alleviate your suffering. I'm not talking about "curing" you; there are plenty of people I can't cure, but who feel better after seeing me.

Name-calling and insults aside, I wish you all health and strength.

 
At Thu Mar 08, 06:27:00 PM, Anonymous Anonymous said...

You are right 95% of the medical community does not recognise "Chronic Lyme" - that's why "Lymies" have to search far and wide to get proper medical treatment. Most "LLMD's" are doctors that know about Chronic Lyme because either they have the disease or a close family member has it. If you haven't seen any documented cases then you haven't looked very far. Try ILADS.com.
The Infectious Disease Doctors that issued their "recommendations" on how to treat Lyme are undergoing a CRIMINAL investgation initiated by the Attorney General of CT. Chronic Lyme Disease is a real disease that occurs when Lyme is not treated long enough when first diagnosed or if it goes undiagnosesd or misdiagnosed. There is a huge Lyme epidemic in our country and mark my words in the coming years you will be hearing a lot more about Chronic Lyme. I know of several people that have had long term (2 to 3 years) of antibiotic treatment (one by an infectious disease Dr!) and are now leading normal lives. Two of them were bedridden and one couldn't lift her head off her pillow prior to treatment. The Discovery Medical Channel has had a Chronic Lyme patient on theie "Mystery Diagnosis" show. "Prime Time Medical Mysteries" will be airing a show this spring about Lyme and MS.
We are real people with a real disease. It shows up on blood tests (which are unfortunately very inaccurate) and our progress is monitored with another blood test called the CD-57, which was intended for other diseases but works only for Lyme. There are two "camps" of Doctors - those who recognize Chronic Lyme and those who don't. We will win the war our lives depend on it.

 
At Thu Mar 08, 07:16:00 PM, Anonymous Anonymous said...

i unfortuanatly do not believe that u had read most of the researches , articles etc. about lyme , dear dinasour .. and i unfortunatly did see hear that u had protested by any means the " nut" name for help seeking and not finding patients .. and i m sure most of them have gone nuts so far because of ignorance ,lack of cures and also because of the nature of the disease .. i had tought this gave u drs an obligation to further educate urselves to help those people and not a reason to make fun of them with names like nuts .. untill it is proven with double blind reasearches , what r the other medical reports mean for so called scientists ? nothing ? then pastour was nobody .. freud was noone .. i m no dr but know what science is .. there r two "intensionally wrong" double blind trials for the uselessness of long term abx in the literatiure as far as i know and what if some other mafia come and prove that black is white actually with a reasearch they arrange , will the " stupid science literat " belive this ? .. u r spending time here doc .. there r thousands of papers u have to read in this time ..

 
At Thu Mar 08, 08:05:00 PM, Anonymous Anonymous said...

Dr. D, thank you for setting the record straight as to where you stand in regard to patients like myself, who have suffered for years and have quite literally been abused by the doctors we have so desperately sought for help.

What it all boils down to is more research needs to be done on the effects and sequelae of Lyme disease; while much of the medical community can say with the utmost of certainty that chronic Lyme is not a valid diagnosis, there really does exist varied and conflicting evidence on the matter. I think, when everything is finally said and done, we will find that the truth actually lies somewhere in between both "camps." Hopefully, in the meanwhile, someone will be able to figure out the definitive cause to the continued suffering of Lyme patients, as well as a treatment option that both sides are willing to accept.

 
At Thu Mar 08, 08:17:00 PM, Anonymous Anonymous said...

Hi, Dr. Dino and other esteemed
members of the medical community,

I wish to recommend that you try googling Dr. Lida Mattman, biology
professor and Nobel prize nominee
for medicine.

Dr. Mattman has published, extensively, on Lyme disease.
Her book "Cell Wall Deficient Forms: Stealth Pathogens" can be
very enlightening.

Dr. Mattman has found the presence
of Bb (Borrelia burgdorferi), the
causative pathogen responsible for
Lyme disease in 25 out of 25 patients with fibromyalgia (in
study group) and presence (always verified by dark field microscopy) of Bb in patients
diagnosed with MS, ALS and similar
other ailments without a generally
nor medically known causative agent.

She believes Bb is the superbug
(super stealth bug) that is at the
core of all these ailments and qualifies Lyme Disease as "the
great imitator" and a most insidious, complex and multi-
symptomatic infection.

Bb is the medically acknowledged
causative pathogen responsible for Lyme Disease.

It is a spiral shaped spirochete
believed to be related to spirochetes that cause syphilis.

I guarantee you that you'll find
this highly renowned and accredited, Nobel nominated
scientist's work with Bb and Lyme
disease quite riveting and perhaps, mind expanding.

Best wishes to you and everyone here.

 
At Thu Mar 08, 09:56:00 PM, Anonymous Anonymous said...

Dr. Stone Age
I do appreciate your view. It is because of the research and controversies through the years that great medical advances have been made so a different opinion is needed for further investigation of any condition.

There are some other comments that I would like to make. Please listen. So far, your posts seem very closed-minded which is no way for anyone in the medical or scientific community to be.

You have been given many sources to better understand this condition. You don't know everything-no one does-even if they are a doctor or even a LLMD. Why not be willing to better understand?

your notes/my comments:

(a condition that does not exist, according to all reputable Infectious Disease experts.)

ALL? I don't think so.

(I just listen)
then listen to these posts

(So now my refusal to believe the woo of Lyme rendered me "illiterate!" )

Not to offend you in any way but according to many when it comes to Lyme, you are illiterate. So literate!

(I hope he doesn't come back.)

Do you only help the patients that you like or that agree with you? If you indeed completely disagree with the diagnosis of chronic Lyme, you have a new? patient that according to you doesn't have Lyme, obviously has come to you as his doctor for help with his health and you hope that he doesn't come back? Here's your chance to give him an alternative diagnosis and you hope to never see him again.

("Self designation of ignorant medical professionals unwilling to accept the proven diagnostic and treatment modalities for Lyme disease.")

No 'modalities' have been proven. But, I have a definition for you. Dr. DinaSOUR-self designated to continue to be ignorant of the changes and current studies in the medical community-particularly Lyme.

(For the record: Like 95+% of the legitimate medical community, I do not know of any credible medical evidence for the existence of "chronic lyme disease.")

I can 'like' tell that you just pulled that figure out of the sky-it is very incorrect-you really need to do more research and arm yourself with knowledge.

(offered a fascinating construct of the role of stress and neuroendocrinology to postulate a mechanism for some of these, though of course the model is still very incomplete at this time.)

And you read it? Are you going to read about Lyme? Perhaps the above 'incomplete' study will prove to be responsible for some patients conditions but that doesn't rule out one of the meanest bacteria that I have ever run into. The study of Lyme is incomplete, too- as well as all medical research as far as I am concerned.

(after having failed to find it through "usual" medical channels, found some relief in the diagnosis of "chronic lyme disease",)

My FAMILY DOCTOR originally diagnosed me. Would you call a reputable 'family doctor' a 'usual medical channel'? Relief in a diagnosis of Chronic Lyme? Pissed would be more appropriate since it took about 7 years of more and more worsening symptoms due to the ignorance of previous medical professionals to even check for it. And until I was diagnosed, I had never even heard of Lyme Disease.

( my actual patients regularly tell me how grateful they are to finally have found someone who will listen to them. [Me, that is.])

Well, I hope that you are listening because one of us could be one of your patients now or in the future.

Please learn more about the borrelia bacteria before knocking the diagnosis. Isn't the whole reason for being a doctor to help people? From things that you have said, I can tell that in many ways you probably are a very good doc but you can never learn too much.

 
At Fri Mar 09, 07:04:00 AM, Blogger #1 Dinosaur said...

Check out this post, folks. Even as you continue to disparage my open-mindedness, notice that I'm the one calling for my colleagues to try taking better care of you.

 
At Fri Mar 09, 08:29:00 AM, Anonymous Erin said...

You might find it interesting that in some countries, Norway for example, when a child presents with flu-like symptoms and arthritis-like symptoms, the first thing they do is test for Lyme so they can start treatment immediately. Let's get with the program!

 
At Fri Mar 09, 10:32:00 AM, Anonymous Anonymous said...

Hi Dr. D,

I'm impressed that you have read all of these responses and are continuing the dialogue. This is a good thing and does show that you are interested in this subject.

I would suggest that you spend one month under the tutorledge of a lyme specialist who is a member of ILADS. Dr. B. would be an excellent choice. You will learn more than you thought possible about lyme and the coinfections. The world needs more experts as this is the fastest growing infectious disease in the US and is growing by leaps and bounds all over the world. This is a fact. There are more insects, more exposures, and resulting chronic illness.

If you want to leave the burdens of insurance-dictated medical practice behind and make a decent living by charging reasonable fees-for-service, you should pursue this option.

We gladly pay out of pocket for our childrens' lyme care because we don't have to put up with all the crap insurance companies dictate. Our kids are improving exponentially under their doctor's care. Our daughter who has had double vision, severe anxiety, autistic-like behaviors, OCD and Tourettes from lyme in her brain undiagnosed by pediatricians for four years, is becoming a different person under her doctor's care. It was only after I was diagnosed and looked up childrens' symptoms that I demanded that the pediatrician run a western blot. Our daughter's IgG results were 10 out of 10 bands reactive. I was one of those patients such as you described, telling the pediatrician what to do, and you know what, she is grateful. She now understands that many people can get lyme without flu-like symptoms, without bulls-eye rash, without arthritis. In children especially it is very complicated and can just present as ADD or frequent, chronic strep.

Check out the this "Ivy League" website about neurological lyme: http://www.columbia-lyme.org/index.html. See what borellia does to the brain. Very sobering. Yet, most doctors don't even consider an organic cause to psychological,etc. ailments. That was the first consideration 100 years ago when syphilis was rampant.

What we all seek is improvement in quality of life and a future that doesn't involve antibiotics or arthritis drugs. Contrary to what many of you medical professionals believe, we want to get up, out of the house, exercising and back to the the lives we once lived. People will pay for that if they know the doctor is sincere, and properly trained. You aren't much of either right now, as regards lyme and the coinfections. But, there's hope for you. Call ILADS and ask to meet with one of their doctors. You will learn alot and could end up helping alot of people as well. Our two lyme specialists are angels on earth, true physicians with phenomenal clinical skills. Join them! You might be surprised at how happy you could be helping people every day of your practice and you wouldn't have to post on a blog about how disillusioned you are. If this doesn't interest you, at least please contact ILADS and have some conversations with those doctors, many of whom have 30 years' experience in the NE dealing with lyme. Talk, listen, learn, please continue the dialogue. Thank you.

 
At Fri Mar 09, 02:12:00 PM, Anonymous L.L. said...

1. How can you expect all of us to trust currently accepted medicine, when many of us have been so terribly failed by that very system?

I went to my GP's office a few weeks after getting bitten by a tick. I presented with an EM, stiff neck, "flu," and a strange rash all over my face and chest. I was told, despite the fact that I saw the tick, that my EM was a spider bite, that there was no Lyme disease in my state, and the tick had to be a "red herring." I was refused a Lyme titer. Six months later, I was so sick that I had to take leave from work. I went back to the doctor and demanded a Lyme titer. It came back positive, but the following "confirming" Western blot came back negative. I was denied a diagnosis, but given two months of doxycycline "just in case."

When I finished the course of antibiotics, I still had many of the symptoms that I had to begin with (maybe because of my delayed treatment?!), and asked for another course. I was refused. Within a month, I broke out in a full-body EM rash - dozens of these things all over me. My doctor refused to see them, sick of my insistence for continued antibiotic treatment. I had no choice but to quit my job. I changed doctors and had another Western blot done. It came back positive. I also got tested for co-infections - something I was flatly refused by my other doctor (the tick was a red herring, remember?) - and that came back positive for babesiosis.

Not even bothering to ask this doctor for more antibiotics, I sought the aid of a "LLMD." This doctor is 800 miles away from home, and I had to borrow money in order to get there and pay for the visit. At least he is willing to consider the possibility that my continued active infection is not all in my head. You roll your eyes at people like myself who are pushed into seeing these "alternative" doctors; where I stand, I really don't see that any of us has much of a choice in the matter.

If I hadn't insisted that my original "well-informed" doctor was dead wrong, despite her fervent insistence to the contrary, I wouldn't have gotten tested to begin with...and I would probably be sitting with a fibromyalgia diagnosis, scratching my head at my bad luck and continued inability to work.

2. Do you deny the effectiveness of all alternative medicine? You do know that aspirin is just white willow bark with other additives, right? Some people who choose to go an herbal route aren't just popping placebos; there is an herbal root to many conventional medicines.

 
At Fri Mar 09, 03:31:00 PM, Anonymous Anonymous said...

Dr D: Thank you for reading our posts. I hope you at least pursue some of the recommended reading mentioned here. I agree that you are more "open minded" than your origial blog post indicatets.

 
At Sun Mar 11, 10:47:00 AM, Blogger MedStudentGod (MSG) said...

Why comment at all if you're going to remain anonymous? That, is cowardice - regardless of your message.

I'm still learning and have no concrete ideas about these diseases. I have read that chronic arthritis can be a sequelae from Lyme disease, but other complaints have not been entirely founded.

However, the main point here is this: Dr. Dino is a wonderful and well meaning physician who is more abreast of therapies than many doctors. Attacking the ideas held by a physician while remaining anonymous is absurd. It's best to not even comment since no one will give much thought to "ANON" comments.

 
At Sun Mar 11, 01:10:00 PM, Blogger The Hatching said...

I have to second MSG's comments. This entire comment real (especially the anonymous ones) is RIDICULOUS! I'll admit my views are slightly skewed as someone who has studied under Dr. D., but the nitpicking and taking things out of context has gone way too far. I love the fact that the comments basically skewer Dr. D and medical professionals in general yet Dr. D. has taken the high road and been overly polite and explanatory while the comments from the ANON's are defamatory and result to name calling (and we're supposed to the immature ones according to the ANON's)

First of all the point of this post had very little to do with Lyme disease, the central idea of the post was Dr. D being insulted by the patient. Perhaps I have an inside view of this, but Dr. D does the best job of any physician connecting with patients that I have ever seen. Even in cases when there is a disagreement with the views of the patient, Dr. D's primary goal is treatment and education. I think we can all agree that first impressions make a huge impact and if you were going to choose a new doctor, lawyer, housekeeper, babysitter, ect., would you really consider hiring them if one of the first things they did was insult you? Come on people.

If you want to express views about chronic lyme or any disease that technically (by technically I mean according to the SCIENTIFIC community and regulatory oversight agencies --> If we can't code it, it doesn't exist regardless of what we believe), I encourage you to do so in a polite forum with your physician, but patients like the one Dr. D wrote about break a doctor's spirit and the more times that happens the harder it is for the medical professionals to listen and be as open minded as you would like.

As for the comments about blogging about a patient, Dr. D did ABSOLUTELY nothing wrong. Talk to any medical professional about HIPPA, Dr. D is clearly in the right. If you can't discuss an anonymous patient, how do you expect student to learn medicine. Dr. D goes above and beyond the standards of my medical school which use initials, age, race, and sex to identify patients in teaching cases. The information that we are given is relevant to diagnosis and possibilities of genetic conditions. Dr. D. provided practically nothing beyond "a man in his late 20's." I wouldn't even want to wager a guess as to the number of patients fitting that description in any family practitioner's office across the country. Then again, information could have been change to protect the 'innocent' since it doesn't relate to the disease, treatment, or the post in general.

I think I've said enough for now, but if you really want to attack Dr. D's views perhaps you should read the ENTIRE blog so you aren't commenting on an isolated case, much less focusing on something that wasn't the point of the post.

 
At Sun Mar 11, 02:06:00 PM, Anonymous L.L. said...

That's HIPAA, not HIPPA, Hatchling....

And Long Island Nurse turned the thread into what it now is with his comment: "Once they start with the complaints about chronic fatigue, chronic lyme disease, morgellons, and chronic this-or-that, I roll my eyes and know I'm dealing with a nut.

"Yes, sometimes even nuts get sick. But usually, they're just nuts."

Some people should not be working in the medical field, plain and simple. From what many Lyme patients have gone through - years of suffering - we deserve a little more respect than that. Read my story, and then read my analysis (my website); it's the attitude given off by so many know-it-all practitioners that's the problem.

 
At Tue Mar 13, 09:23:00 PM, Anonymous L.L. II said...

I've begun a couple of posts to this thread; but, chose not to enter in, until reading this well-spoken article. If the goal of earning a medical degree is to aid the patient to wellness, I would have concerns with seeing a physician who would compromise a patient's confidentiality in an online blog. I would also be concerned, as a professional colleague, to see that other colleagues enter in.

Having said that, the article below is well-worth reading. It quotes the AMA in a most recent publication.

History is known to repeat itself. It would be unwise as a medical professional to think finitely, when we have seen the evolution of many diseases that were once viewed as non-existent, and now diagnosed during routine examinations b/c R&D has at last advanced in that particular field and unlocked the mystery or laid to rest the controversies that plagued the academia regarding same. Sadly, it is the patient seeking answers, who suffers.

Always remember, that it could be you in the position of having to research, advocate and fight for your life, or even worse, the life of a loved one or child, when all that you believed about medicine to hold all the answers failed you, the patient.

One who is truly professional has great listening skills and is careful to aim his darts with greater precision.

The tide is still turning. Wisdom says, especialy to our residents in training...watch and wait, learn and seek truth. Do not draw conclusions based on what you hear. You have much yet to discover that will fall well beyond the paradigm of what you have seen. Search with your soul. Fight for your patient's life. Your patients will never forget the one who listened w/o judgment but with the ear that is fine tuned to think outside the box, willing to search as a true pioneer and committed to eradicating the root of the problem so that the symptoms are resolved and no longer needing to depend on the pharmeceutical industry beyond what it was originally intended for.

The Article: In the AMA news this week (March 2007), the following headline appeared, "Rethinking training in chronic disease management". The article went on to say, "At present, medical education is based on an acute care model in which patients are examined, diagnosed, treated and released," said David C. Thomas, MD at Mt. Sinai School of Medicine in New York. In the March issue of "Psychology Today" in an article on Morgellons disease, Rhonda Casey MD of Oklahoma State University Pediatric department says,"...the structure of modern medicine can discourage examination of complex, multisystemic disorders. Most doctors are still poorly prepared to address illnesses with both physical and psychological components." Robert Bransfield MD says in the same article "Your average physician does a one-month rotation in psychiatry in medical school,...so when there's a disorder that has physical and psychiatric symptoms, physicians often don't understand how to put all the pieces together....one way to think of it is that there's quite a bit of cross talk between the immune system and the nervous system...but there isn't a lot of cross talk between psychiatrists and immunologists and infectious disease doctors. The way we've compartmentalized specialties contributes to our difficulty in dealing with problems like this." When diagnoses in this gray zone of understanding, they often end up on the field of mental health, he says, even when there's a solid physiological cause.

It is becoming increasingly clear the difficulty most doctors have in seeing a specific disease within the total framework of a persons disease processes. This has significant ramifications in two important areas of healthcare: 1)physicians who are ill trained, ill prepared, and often unwilling to diagnose and treat patients with chronic illness; 2)The insurance industry, government (Medicare, Medicaid, CDC, FDA) and the pharmaceutical industry are cutting costs (not paying for chronic illness} and limiting treatment options (pharmacy) for difficult to manage diseases. The article in "Psychology Today" went on to name what they call "Diseases Under Fire" meaning those diseases which most doctors do not understand. In addition to Morgellon's disease which the article was written about: • Chronic Fatigue Syndrome • Fibromyalgia • Chronic Lyme Disease • Multiple Chemical Sensitivity Syndrome • Gulf War Syndrome Of a side interest to many, in the same article, Ginger Savely, a Nurse Practitioner, sees an overlap of Morgellons patients and Lyme disease. Sevely says that 90 percent of her Morgellons patients tested positive for Lyme disease. Finally, a ray of hope for the greater medical community. The AMA reports that several medical schools are now receiving grants for programs training future physicians on how to treat chronic illnesses. That good ol country doctor, who many of us had the privilege to know, not only saw patients in his office and the hospital, but made house calls, was forced to see the entire picture of a patient's illness. He or she, was not only a physician who thought in terms of multisystems when it came to diseases (outside the box), but was forced to be a good psychologist as well. In Dr. Ryser's many slide presentations, she has the following two slides that are an appropriate closing. "The burden of Chronic Illness is staggering: It affects families, friends, communities, societies, and countries. The burden is physical, emotional, financial and spiritual. The clinician can experience a sense of being overwhelmed." Carol Ann Ryser MD “Our moral and ethical obligation as physicians, is to look at the health crises and evaluate how to structure our practice to address our chronic illness chaos for current and future generations” Carol Ann Ryser MD Later in the same slide offered a quote from William Osler MD, "“If you listen long enough, the patient will give you the answers.”

So, in closing - it would seem that one size does not fit all. The tide is turning, slow as it may be; but, science continues to evolve providing answers to questions that even the best intended doctors gave up on b/c of conflict of interest. It is not about us vs. them. It is about us vs. 'it'! Word battles serve nothing, integrity always prevails.

It saddens me to read that patient confidentiality was compromised by an apparent 'respected' medical professional. I sisncerely hope your patient does not read this blog and see that his doctor spoke so disrespecfully. It could cause the cost of mal-practice insurance to rise in PA, my homeport. But, the greater travesty is what it might do to further compromise his health and future wellbeing. You should not be discussing your patients online anymore than I should be attacking my doctors. It is unethical and an insult to the integrity that you profess.

I appreciate the opportunity this blog has permitted for the voice of those suffering. There are many well spoken voices representing a great need. Those who have expressed themselves well, will be able to encourage others who are searching and find themselves in similar circumstances...seeking medical help for chronic disease and suffering, where it truly applies to physiological pain in the body, and that merits respectful attention and professional care.

The lady rests.

 
At Wed Mar 14, 07:32:00 AM, Anonymous Anonymous said...

http://www.wildernetwork.org/why_r_we_still_sick_pg2.html

there r cases in the link proving chronic infection of lyme written by doctors , researches but not by nuts or lyme patients ..anyone who wants to be a real dr should read them i think no matter how old ..

and i m not writing to this blog under name anonysmus because i m coward , mr./mrs stupid .. i prefer this because it is easier and i have very little energy .. and if u care about the ideas but not personalities u wouldnt be expacting a nick name like dinasour , dog , caw etc .. i hope the one cant understand an idea without a name or nickname dont is not in health service..

 
At Wed Mar 21, 12:39:00 PM, Anonymous Anonymous said...

Dr. Dino and Long Island Nurse Ratched, you might benefit from reading these two new books about your profession:

"We live in an era of evidence-based medicine, in which population-based studies, Bayesian analysis and clinical guidelines increasingly dictate medical care. Both authors bemoan this development insofar as it makes physicians into technicians. Doctors, Gawande writes, need to stop to "wonder" and reconsider the paths they have taken. Groopman's best physicians arrive at judgments by assessing not only their patients' complaints but their characters and by paying attention to their own emotional responses to patients."

from The Washington Post
http://www.washingtonpost.com/wp-dyn/content/article/2007/03/16/AR2007031602051.html

And you may want to reconsider the blog:

http://www.washingtonpost.com/wp-dyn/content/article/2007/03/16/AR2007031602097.html

Please reconsider your views and help your patients, instead of maligning them in a public forum.

 
At Thu Mar 22, 01:29:00 AM, Blogger Cathy said...

I just want to point out one thing to all these commenters. You are blaming Dr. Dino for things he did not say. Many of you have made reference to something a nurse said in the comments and are using it as ammunition against Dr. Dino. He did not call anyone a "nut" or mention anything of "rolling my eyes."

Long Island Nurse said;

"Once they start with the complaints about chronic fatigue, chronic lyme disease, morgellons, and chronic this-or-that, I roll my eyes and know I'm dealing with a nut.

Yes, sometimes even nuts get sick. But usually, they're just nuts.

Thankfully, I only have to deal with each individual nut on a limited basis. I'm surprised you didn't discharge this guy from your office, permanently."

If this is who you are really angry at ( I can't say I would blame you) then why not put the blame there?

 
At Thu Mar 22, 10:47:00 AM, Anonymous JD in VA said...

Dr. D said:

"...he related a history of back problems and a course of treatment for "chronic Lyme disease" (a condition that does not exist, according to all reputable Infectious Disease experts.)" and

"So now my refusal to believe the woo of Lyme rendered me "illiterate!" I was too startled to say anything other than, "Oh." "

The "woo" of lyme has cost us tens of thousands of dollars in out of network bills which would not have been necessary had a good old dinosaur doctor correctly diagnosed and treated my entire family when lyme first reared its ugly head. The anger is directed at Dr. D and LI Nurse because they are abusing their authority as medical professionals to whom hundreds of sick people turn to for help, and then, publicly ridicule those sick patients on the Internet. They have power and they are abusing it. Do you not see this? They are told things in confidence. These commentaries should be saved for private e-mail communications. Don't you understand that it is these expressions of arrogance and condescention that alienates so many patients from Dr. D's and LI nurses?

"I hope he doesn't come back." He won't. He'll send in an anthropological team to dig up the bones, to determine why GP's across the country went extinct. (and find lots of Rx company pens - a vital clue to the demise of the GP. Why not prescribe XANAX forever rather than determine the cause of the problem. )

With a handful of exceptions, "reputable infectious disease experts" is an oxymoron. Are you aware that the IDSA is under investigation by the CT State Attorney General for promulgating guidelines in violation of antitrust statutes? Patients should be made aware of the two standards of care, not just those dictated by the IDSA gestapo. Learn about this please. Don't be medical robots. That is what we are all saying. Listen to your patients.

 
At Mon May 07, 09:23:00 PM, Blogger webhill said...

I just wanna comment on the previous comment that "vets vaccinate dogs for [lyme]..." - most informed vets actually don't. The most recent position paper by the ACVIM came down pretty much against vaccination. Lyme is almost never a clinical entity in dogs. I'm just saying.

-wh.

 
At Fri Jun 15, 07:26:00 PM, Anonymous Anonymous said...

No chronic Lyme?? lol and your a doctor! wow.

 
At Fri Jun 15, 08:30:00 PM, Anonymous Anonymous said...

This is a real shame. Maybe this is why there is a movement to send old docs back to school.

I have lived 12 years in extreme pain, and I have a bacteria in my blood an doctor with a pair of eyes, a brain and a microscope can see. I can not understand a person with such a degree not being able to accept physical proof.

I feel for you.

Do tell why you feel this does not exist? Please list sources, studies.

 
At Fri Jun 15, 08:46:00 PM, Anonymous Anonymous said...

During the summer of 1991, while in doctoral study at a prestigious institution of higher learning in Massachusetts, my feet and knees went numb. I had to hang onto the walls in order to be able to walk. My fear that I was developing MS was relieved when this symptom resolved spontaneously. I did not realize my days of good health were over.

That fall I developed bursitis in both hips; then atypical thyroid problems emerged. Initially diagnosed as infectious thyroiditis, the diagnosis was changed to Grave’s disease. I underwent treatment with radioactive iodine which destroyed the thyroid’s ability to function, and started artificial replacement for life.

Over the next ten years a number of other health problems emerged. By 2002 I was diagnosed with asthma, chronic bronchitis (possible COPD), vertigo, peripheral neuropathy, hormonal abnormalities, aphthous ulcers, angular stomatitis, and arthritis in the spine. Undiagnosed but present were problems with memory, concentration, and orientation, severe fatigue, low grade fevers with chills, and crippling tendon pain.

On January 1, 2003, I awoke with conjunctivitis (pink eye) and went to the only open walk-in clinic. There I was seen by a physician’s assistant. Neither of us was in a hurry and we discussed my extensive and puzzling medical history. He suddenly asked, “Have you ever been tested for Lyme disease?”

Internet research led me to lymenet.org. I became convinced that Lyme disease was why, despite good diet, normal weight, regular exercise (until recently), and previous excellent health, I was rapidly declining. Through the “Lyme underground,” I found a physician who believes that chronic Lyme disease exists and that people who have it benefit from long-term treatment with antibiotics.

Numerous tests, lots of antibiotics, and four years later, I have mostly recovered, built my own house, and progressed in my field. I have returned to weightlifting, and am in better cardiovascular shape than ever before. Other than the consequence of having had thyroid oblation, my only diagnosis is Lyme disease. I still have occasional mild symptoms but have been given another chance at life.

Many in my situation have had far greater difficulties both in securing treatment and good outcome. Two years ago a local young man of twenty-one died of it unexpectedly. There are many who drive hundreds of miles and pay out of pocket in order to be treated because of insurance company refusals to cover necessary care. Many do not enjoy my level of recovery. Some have become disabled and financially devastated.

I have been very fortunate to have education, assertiveness skills, a loyal partner, a truly collaborative physician, health insurance, and a can-do attitude. With these I have been able to address my illness despite a raging and nasty medical controversy over whether what I have exists or is treatable. The debate is between university based researchers, who have strong ties to the health insurance industry and the medical journals and their editorial boards, and physicians practicing in the community. This “Lyme war” has a detrimental effect on all people whose Lyme disease was not caught early and treated aggressively.

The medical researchers, who don’t need to cure anyone of anything to earn a living and progress professionally, hold that Lyme disease is cured with thirty days of antibiotics. If, after such treatment, the individual still has symptoms s/he has “post-Lyme syndrome.” They proffer this purported and untreatable condition as the explanation for continued symptoms but offer no scientific explanation or evidence of its presence. It is used to deny treatment to people with a life altering and sometimes fatal illness. It’s a purported condition because, if the medical researchers truly believed they had identified a new syndrome to exploit for prestige and personal gain, they would be all over it with “discoveries,” publications, and licensing agreements.

Lined up against all of this institutional power is a small number of frequently persecuted physicians, who consider chronic Lyme disease to be due to continuing infection and treat it with long-term antibiotics. Also fighting the system are the suffering people who endure illness, non-payment for medicines, frequent disability, and scorn of much of the medical profession.

The attorney general of Connecticut is now investigating how the Infectious Disease Society of America (IDSA) developed its new and even more restrictive treatment guidelines. At issue is whether, by selectively considering evidence and excluding dissenting opinions, the Society is engaging in restraint of free trade. The IDSA claims that the guidelines are simply recommendations. That is disingenuous because the insurance industry uses the guidelines to restrict access to treatment and the medical boards use them to persecute our doctors. The IDSA has reason to be worried. The clinical evidence and the research from overseas, which they are unable to suppress through their editorial board memberships, are catching up with them.

This is my story of dealing with a controversial illness. I have been fortunate to get treatment and a good response. Yet I have had to deal with having coverage for my medications denied, physicians insulting my intelligence, and the knowledge that virtually no effort is being made to research effective treatment. Rather, the research is focused on attempting to demonstrate that we are untreatable. However, the inconvenient fact is that high profile individuals, such as writer Amy Tan and musician Daryl Hall, have gone public about recovering from chronic Lyme disease through the use of long-term antibiotics. This gives me hope that truth and ethics will prevail.

 
At Sat Jun 16, 12:46:00 AM, Anonymous ilona said...

yup, we're all crazy except the wonderful folks in white who know everything and only get angry when dealing with patients who have the impertinence to think that they know something... sort of like when i was in the hospital and the quacks were diagnosing me with itp, and i looked at my chart and found that my ldh was twice the normal amount and fancy that, in harrison's it said that if you have elevated ldh it can't be itp, it might be ttp, and oh, the nerve of me to mention that to the residents, and they promptly tried to take away my harrison's and forbade me to read my chart. lo and behold, two days later i was diagnosed with ttp. how impertinent it was of me to suggest that there might be a microbial etiology to my ttp, but no-o-o, that was foolish of me, and why didn't i just trust those dear doctors who promised me there was no underlying microbial cause. of course, the author of this article http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijid/vol2n2/tick.xml clearly is wrong, at least according to the doctors who treated me for my ttp. anyway, i was hospitalized for two months, received 50 plasma exchanges that didn't do squat except infect me with god knows what retroviruses, and finally got the ttp cured with vincristine. it took a year of worsening neurological symptoms for me to be diagnosed with lyme, and a lot longer than six weeks of antibiotics to get me on the path to health, and btw, vancomycin was never one of those antibiotics. i hope that you and your ilk who pooh pooh chronic lyme never get infected with lyme, bartonella, ehrlichiosis, babesiosis, mycoplasma, or any heretofore undiscovered organisms that live in the gut of ticks. i also hope you get over your outrageous arrogance. i almost died under the "care" of physicians such as yourself who knew there was no such thing as tickborne disease underlying ttp. oh,and by the way, one particular LLMD is the doctor who prescribed the (non-vancomycin) antibiotics that got me back on my feet and stopped the myoclonus, fasciculations and arthritis that plagued me. oh, one more thing. how many antidepressants, stimulants (for adhd, of course) and statins do you hand out? a lot more than antibiotics for lyme, i would hazard a guess. hmmm i wonder why, let me think... could it be that there just aren't as many chinese lunches and/or free vacations coming your way when you prescribe doxycycline, plaquenil or minocycline... how many women died from breast cancer sparked by hormones because it was the style ten years ago to push them on every woman of a certain age... maybe you gave out hormones more than you would antibiotics to someone with chronic lyme... you guys are like lemmings, only lemmings hurt themselves, not their patients... the reason i see my LLMD is that he's an independent thinker, and a decent diagnostician. what would you have done? given me a pill for gastric reflux?

 
At Sat Jun 16, 07:07:00 AM, Anonymous Anonymous said...

Dr. Dino,
I can understand why you feel as you do, based on what is being told to doctors by the leading Lyme researchers like Allan Steere, MD.
And I can also understand how it appears suspect when you hear of "Lyme doctors" who are outside the mainstream, using expensive and long-term treatments. It sounds unscientific and not something you want to be associated with as a physician.

That said, I am writing to tell you that things are not so simple. From a scientific standpoint, this very complex organism has recently been shown to have multiple forms (including non-spirochetal forms, and undergo antigenic variation.

The cystic or round forms of Bb have been found by numerous researchers (not Lyme doctors) both in the United States and abroad. There is one research study published by a spirochete lab in Italy demonstrating the ability of cystic forms of Bb to convert back to spirochete forms in vivo in mice.

There is much still to be learned. The studies you've read that conclude that the organism is gone after a few weeks of antibiotics are all based on a older understanding of the organism. They assume it is *just* a spirochete, whereas evidence shows that it can exist in the body in much tinier round forms that lack outer surface proteins.

L-forms have been demonstrated in some other bacteria to actually undergo DNA changes, dropping fragments.

No one has all the answers yet. However, it is entirely possible that today's understanding of Lyme disease will be turned on its head in the future, as a more sophisticated view of the organism emerges and ways of detecting Bb in cystic or cyst-like forms are developed.

If the organism is present but in dormant, cyst forms that do not evoke an immune response, this would explain why patients may be seronegative (as is true with syphilis), and why the clinical symptoms can re-emerge after a period of quiescence ... an illusory cure.

It would also explain the many reports from patients (and reports in the literature) of relapses after cessation of treatment.

We must all keep an open mind. There is much still to be learned about Lyme disease. If you are interested in a quick but comprehensive review of the peer-reviewed medical literature on Bb cystic forms, you can find a summary at www.lymeinfo.net/lymefiles.html. (Click on link for medical literature summaries.)

 
At Sat Jun 16, 09:30:00 AM, Anonymous Anonymous said...

Dinsour. I suggest you readup about Chronic Lyme disease.
It's only insurance companies and large organisations like the IDSA that say it doesn't exist.
It's the people who have suffered from this disease first-hard, and the doctors who have treated many cases of this disease that say Chronic Lyme disease exists.
Here in Europe, we only have 3-4 "LLMD's" - all of them have suffered from the disease themselfs.
So it basically takes a doctor to suffer from the disease, before he really knows how awful it is - for this reason I wouldn't expect you understand, unless you have had Lyme disease?

 
At Sat Jun 16, 09:36:00 AM, Anonymous Mom in New Jersey said...

I believe that this patient got under your skin and evoked a less than professional response from you because he knew more about his illness than you do. If you do not know what patients refer to when they use the term Lyme Literate MD, then there are many venues you might explore to get this information. In short, my best definition is that an LLMD treats his patients until they are well, rather than until he gets frustrated with their symptoms and needs.

I have a daughter who has been battling ZLyme disease for 11 years. I thank god her doctor is not like yourself.

 
At Sat Jun 16, 11:57:00 AM, Blogger Michelle Mahood said...

Dear Dr. D:

I do admire your honesty.

Here is the difference between an LLMD and a non-LLMD:

LLMD's can read.

It is clear to me that non-LLMD's actually cannot read. Apparently the ability to read evaporates following completion of medical school.

Do you know there are at least a dozen research studies documenting the persistence of the lyme bacteria in spite of repeated courses of antibiotics? Have you read those?

No, of course you haven't.

Well, the IDSA read them and dismissed them all as apparent "cross-contamination in the lab." Uh, yeah. All of them -- even from differing and prestigious labs.

Do you know how common co-infections are, presuming of course that you even know what they are? Try anywhere from a third to two-thirds of lyme patients.

Do you continue to rely on the ELISA or lyme "titer" being positive before doing a more definitive western blot? Of course you do. Did you bother to read the Johns Hopkins study indicating the woeful rate of missed cases? Try about 50% -- and that's conservative.

Did you know that conventional labs that run a western blot (if a patient should be so lucky as to get one from you) totally omit two of the most important bands -- bands 31 and 34? In other words, a patient could be screaming positive on those bands and you'd never even know it! You'd send them on their way with some antidepressants. Do you know why those bands are omitted, despite being so specific to lyme infection that they were used to create the failed LymeRix vaccine?

Because you might have ostensibly had the vaccine and thus test falsely positive.

Honestly, how much better conventional western blots would be if they included those bands and simply just asked the patient whether they have been vaccinated. (Fortunately, few have.)

Did you know that IGeneX -- a lab specializing in tickborne diseases -- is the only lab to test for multiple strains of borrelia burgdorferi, in addition to testing ALL bands on a western blot? No, of course you don't know that.

Did you know that babesia can be chronic, can infect the brain, and can survive repeated rounds of treatment, in stark contrast to most insurers' approved regimen of 7 days of antimalarial treatment? No, of course you don't know that. Because you don't read. (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1552079).

It's no wonder lyme patients are forced to find doctors who keep abreast of research. Believe me, patients do not want to have to know more than their doctors, but doctors like you force them to.

Please spend some time reading. It's time well spent if you want to actually heal your patients rather than simply mocking them.

 
At Fri Aug 31, 03:01:00 PM, Anonymous Anonymous said...

Dr. Dino, you sir, are an obstinate fool who is causing harm to your patients.

You have an obligation to read up on and keep current with what is fundamentally an ever evolving human knowledge of disease.

Yes, you are with the 95% of doctors ignorant of the current state of knowledge regarding lyme disease. You should not be proud of this, but rather you should be ashamed.

You are exactly like doctors who still insist that stomach ulcers are caused by "stress" and diet instead of h.pylori bacteria and NSAIDs.

Doctor, know this:

YOUR PATIENTS ARE SMARTER THAN YOU.

 
At Sat Sep 08, 11:49:00 AM, Anonymous Anonymous said...

HIPPA is HIPAA; drives the FEDS nuts that people don't get it right, I found this out in a recent training on the law. It is OFTEN noted as HIPPA.

Found the website by mistake. Dialog is good, but insults do not further discussion.

Any doctor who listens at all in the 15 minutes drive appointment medical climate of our modern day is to be applauded. Those who seek answers are gold.

Please, however, doctors...remember, as my doctor recently said to me..."people who are sick are not always on their best behavior." I must say that also does not make them a "nut". Many are just frustrated, and some are misinformed, i.e. HIPPA.

I was interested in the discussion on Lyme. I, too, have had at least a year and probably a year and a half battle with no diagnosis. Due to my living in a Lyme endemic area, I am concerned. I've even questioned my psychologist husband as to whether or not I am a "nut".
But, as others have said here in many ways, I once had an active, happy lifestyle, and now I have odd symptoms that defy diagnosis, have lived with migrating 24/7 pain, and now live a MUCH reduced lifestyle.

My doctor, however, is wonderful and listens and respects me. She knows that before this time, I only came into the office for my once a year check up, so something must be wrong. She seeks answers, and the aid of specialists. I am hopeful.

Thank you for the discussion.

 
At Tue Sep 25, 04:01:00 PM, Anonymous Anonymous said...

Ah...Anon is just easier than signing up for one post.

My name is Nancy. I have no qualms about saying who I am. I would even post my last name but there are indeed predators online. My email is tinysmalllittle@yahoo.com
By all means, I am not afraid to say who I am.

I take no sides in the controversy. I just want to be well. However, please review what the NIH has to say:

http://www3.niaid.nih.gov/research/topics/lyme/research/antibiotic/antibiotic.htm

Hopefully the NIH is respectable enough as an authority for you to take seriously. Their studies lay between the two camps. Also, they have funded the chronic lyme research at Columbia University. One would think that if NIH thinks its possible enough to study it that it shouldn't really be dismissed out of hand.

There are other studies on dogs showing bb persists. Most vets will not give the vaccine anymore, by the way.

Look, most people who suffered from Lyme...we are a little unbalanced. It doesn't help the cause that you might be attacked, but many people with bona-fied Lyme are indeed made more ill by BOTH camps, Doc.

I was "CDC positive" in my diagnosis this year, I grew up in NJ, went untreated for most of my life after being infected as a child before they knew what the rash meant. Despite antibiotics over the years for sinusitis (I have cysts in my sinuses), infected exocrine glands (parotid, bartholin, tear ducts, etc), and chronic "tonsilitis", it obviously was never enough. As the years went by, I became more and more debilitated. I have been given every "diagnosis" such as fibro, CFS, autoimmune disorders, but never had an elevated sed rate, nor did I ever test positive for antibodies. I had anemia of chronic disease, subclinical hypothyroidism (no hashimoto antibodies), heart problems, pulminary fibrosis similar to toxoplasmosis or Sarcoidosis with no explanation, pain, migraines, degenerative disc disease...measureable symptoms that go on and on. Yet, I have been dismissed out of hand for years and years due to ignorance, plain and simple.

A small town dinosaur diagnosed me, as he runs Lyme as part of his arthritis panel.

Even he...not an "LLMD"...knew from experience in dealing with Lyme that it just doesn't go away in anyone who isn't treated immediately without a longer course of antibiotics.

Because I had a dog that relapsed 3 times before I had to have him put to sleep in 92, even after "proper" and repeated treatment for Lyme, I know there is something to this...but I am not a doctor. I rely on doctors, whom I PAY for their services, to become knowledgable and hold acountable...as it should be with ANY service I pay for...to get these answers for me.

There are no studies proving that late lyme is cured with short term antibiotics. The studies the CDC cite as proof are all people whom have had EM within three months. Mine was in the 70's. There have not been any studies on someone like me, and the truth is, you just don't KNOW. No one does.

The uproar here, the attacks, are because you took a stance without reviewing all the information available. The IDSA made guidelines based on CDC criteria. The CDC even says that nothing replaces the doctor's judgement. If you allow the IDSA to trump your judgement, what is the purpose of being a trouble-shooter of the body? You don't have to believe in ILADS to see that this is true. Its general information available to the public.

Note, many late lymies are fed up with the treatment they get and the brick wall they hit. I cannot make you actually review all the information available. I am all about PROVEN treatments, however the truth is, nothing here is truly proven one way or the other.

The reason the family practice is almost extinct is because of the brick walls patients who have more difficult diagnosises. Just a word to the wise, with all due respect, your comments are as insulting to sufferers as that man was to you. Go to conferences. Read more than the literature provided to you by the pharma companies who come peddle pens and want you to write a brand name script to someone on a walmart budget.

You are web literate enough to blog...google a few things. Have a thirst for knowledge. This, and nothing else, will show compassion, open-mindedness, and less conflict. Read some of the message boards. Sure, there are some fruitcakes on them. There are fruitcakes everywhere, doc...but you will also see some diamonds in the rough. Here's a good, new one:

http://www.lymeenigma.proboards104.com/index.cgi

As for your post itself, I wouldn't go to you as a doctor. If you aren't the type to challenge me if I say something wrong or stupid from the get go, I wouldn't trust you as a patient. I would walk around thinking my new doc was on board with my current treatment or my thoughts. Anything less is like lying to me. And, I'm rather easy going, but I find your post here to reflect a lack of ethics. Not your prescribing ethics, or your treatment ethics...you seem to be firmly (possibly too much so) grounded. But your personal ethics. A family doc (and again, reason for extinction) is a catch all. You would need to be a bit of a sounding board, a bit of a presription writer, a bit of an analyst and trouble-shooter, a bit of a counsellor. Was this person baiting you? Maybe. Maybe he was nervous that you wouldn't agree with his current treatments and it came out wrong and combative. Maybe you didn't deal with that as well as you could have. And this was not the forum. I come off strong sometimes because of all I have been through, too, my BP is up with a new doc and I am nervous as times. I think people saw this and couldn't really communicate it to you and attacked rather than give you an honest, emotionless survey of what was ticking them off. Patients are angry, Doc. They are angry at docs who are a brick wall, who come off as on-board and compassionate and then do a 180 degree turn when its time that we need your help. Take your lumps from these folks. Learn from it rather than become defensive. You are not going to be able to mention Lyme on the net without fallout. You are not going to be able to mention dismissing a patient as baiting you and insulting you online because he's got a chronic disease (whether it is a post lyme syndrome...which the precious guidelines indeed admit existance...or a chronic infection, along with asthma, another chronic disease...the man is sick) without fallout. I'm sorry...but this is why patients are angry. This is why they attacked you. It doesn't excuse them, but it sure explains a lot. Step outside yourself for a moment and see what it might be like from the other side.

Here are a few more studies and comments by some regular-old-mainstream or research docs:

http://www.jstd.org/


http://www.columbia-lyme.org/flatp/treatment.html


http://www.johndrullelymefund.org/lyme_disease_and_cognitive_impai.htm


Some peer reviewed articles

http://www.wadhurst.demon.co.uk/lyme/lyme101.htm

http://www.angelfire.com/biz/romarkaraoke/lymeart.html

Hope this helps. Again, forearmed is forewarned.

 
At Thu Nov 01, 04:06:00 AM, Blogger barksplinter said...

Never once have I heard a a "Chronic Lyme debunker classify persons with Lyme infections only discovered years later. IE 1% of Americans!

Per CDC's narrow guidelines, only 1 in 10 cases of Lyme infected persons were Diagnosed in 2006. Per CDC there were 20,000+ REPORTED Lyme cases in 2006. 10 X's 20,000 = 200,000 cases in 2006. Minus the 20,000 diagnosed cases = 180,000 UNDIAGNOSED LYME cases last year...

If a patient is not diagnosed, they are not then treated; Is that safe to assume?

A significant portion of this population is developing Rheumatoid and Neurological symptoms and have POSITIVE WESTERN BLOTS... What would not any prudent provider include Lyme in their Differential?

20 years X's 180,000 UNDIAGNOSED Lyme cases ... we could easily get to a number like: 3 MILLION UNDIAGNOSED LYME CASE currently in the U.S.! Would a prudent person consider 1% of the U.S. population RARE, as does IDSA?

The IDSA leadership have VERY significant conflicts of interest and may soon come under anti-trust action.

There is a lot of SCIENCE refuting IDSA's position on LATE Lyme, CHRONIC Lyme, TERTIARY Lyme, or whatever term one feels comfortable/uncomfortable with. Recognize this parsing of terms, like a cynical politician, is offered by those with above said conflicts of interest looking forward to legal defense in future tort cases.

Follow the Science, Follow the Money; always good advice for those looking at the Field of Medicine.

Barksplinter

 
At Fri Jan 18, 08:32:00 AM, Anonymous Anonymous said...

My name is Sarah Olson, I am a Tick Borne Disease Support Group Leader from Aptos, California, where 10 years ago MDs sounded just like you- until in 2003 a study found what our disease cluster already knew- that Lyme infection is #1 in Aptos of all of California- and the MDs? They are still repeating, "There is no Lyme in California." when the 2003 study showed that 1 of 5 adult ticks carries it literally where I live- and 3 times that in nymphs.

I had documented EM, positive blood tests and I still get called a nut. Amazing. Somehow my Bb bacteria were suppsoed to know that at 30 days they magically turned into "Post Lyme Syndrome".
Those 30 days ALMOST cured me, I was ALMOST well, but not quite.
Funny, the spirochetes didn't know, they didn't go away, but my doctors refused to treat me with more abx.

Within 6 months I had CFS & IBS & FMS, within a year I had gross neurological problems- chorea with athetosis in my left hand, chorea major- and progressive weakness, bradykinesia, micrography (only 2% of Lymies get extrapyrmidal symptoms but I am one of those lucky 2%) slurring, numbness to my knees, clawhand and encephalopathy to the point where I could no longer drive, cook or remember my childs name. She was 2 and I loved her very much. Oh and incontience and abotu 100 more symptoms like choking on my food.

My PCP finally, when I began to fall and slur and have the movement disorder, when he could at long last SEE his stupidity,
told me I could go back on orals.

But orals no longer did anything.

Thakn god I found an LLMD, who found I also had Babesiosis, and he treatd me with combos of high dose orals- but they no longer worked. After a whole year of trying with orals, when I began to be bedbound he put me on IV Rocephin- and the first 6 months I conitnued to progress.

My mother and husband were talking tertiary care facilities and arguing over who would best care for my child (my mom wanted her).

ANYWAY, month 7 I turned. Everything began to get better.
My claw hand went away. My slurring went away. My chorea went away. Etc.

By month 9 I was almost normal and have been there ever since for the last 8 YEARS.

I was able to go back to work
full time as a counselor with
the severely mentally ill.

Normal life is good.

I still volunteer as a facilitator for the local TBD group because even though it was shown in The Journal of Medical Ent in 2003 that Aptos and Santa CRuz County are not just endemic but epidemic, no doctors seem to have caught on.

People still get treated like
they are crazy when they have a BACTERIAL INFECTION analogous to syphilis.

Once we actually DID have someone show up to the support group who I even thought was nuts. She was delusional. She was over-medicated. I thought finally I had met one of those people who THOUGHT they had Lyme, but didn't.
And then she went on abx- and you know what? I have worked professionally with severe bipolar & severe schizophrenics and I have never ever seen that kind of transformation- after months of abx- she was clear as a bell.

I hope the hostility here hasn't ruined a chance for you to learn something.

In 8 years of running a support group we have had ALS Lymies live, and a dozen MS Lymies do well. TBD treatment is a paradigm shift- it is coming. Read BULLS EYE by Jonathan Edlow, MD. He is neither an LLMD nor an IDSA murderer, he's a Lyme moderate. Good book-

The Attorney General of CT
Richard Blumenthal launched an investigation into those writers of Lyme guidelines- the IDSA- for conflict of interest- for pandering to insurance companies- and for going against the interests
of patients.

You may not have known that.

Do some research. You'll find that Lyme is not easily cured.

Take care all,
Best wishes,
Sarah Olson
1-831-662-2895
260 Spreckels Drive
Aptos, CA 95003
at the base of Nisene Marks
the #1 hotspot for Lyme
in California
where our doctors STILL say
"There is no Lyme in California."
because MDs don't read Entomology Journals- or Pubmed it seems...

p.s. Why do so many people die of a disease which does not exist??
The Lyme Disease Memorial Pages
http://www.angelfire.com/planet/lymedisease/Lyme/Memorial.html

p.s.s. For any ALS patients you Docs have, not all live, but SOME do- better than what you have to offer them- a chance-
The ALS/Lyme Page
http://www.angelfire.com/planet/lymedisease/7/ALSLYME.html

 
At Fri Jan 18, 09:18:00 AM, Anonymous Anonymous said...

Dr. David Martz
Chronic Lyme disease debate: Common ailment or false hope?
BY BILL RADFORD

The Gazette

COLORADO SPRINGS, Colorado

Like the flu, it hit hard and fast.

But Dr. David Martz knew whatever he had was worse than the flu.

"My whole body hurt, and I could hardly get out of bed and I could hardly walk," he said. "I knew something real serious was wrong."

He fell ill in April 2003. He was hospitalized for two weeks and underwent, he said, "every test known to man." Weeks and months went by as his condition deteriorated, and the search for answers continued. The answer, when it came, was frightening: ALS, also known as Lou Gehrig's disease, a progressive neurological disease that attacks nerve cells responsible for controlling voluntary muscles. You'll probably be in a wheelchair in six months, Martz was told, and dead in two years.

A newspaper clipping sent to him by a family friend gave him a possible alternative diagnosis: chronic Lyme disease. And it put him in the middle of what is being called the Lyme Wars, a debate over the true threat posed by Lyme disease.

Lyme disease is a tick-borne infection most prevalent in the northeastern United States. Mainstream medicine regards it as generally simple to recognize and easy to treat with a few weeks of antibiotics. But some doctors view Lyme disease as something more common and more insidious, often hiding in the body and manifesting as a chronic infection requiring months or years of intensive antibiotic treatment.

They regard Lyme disease as a "great impostor," accounting for some cases of chronic fatigue syndrome, fibromyalgia, Gulf War syndrome and other illnesses with often vague and confusing symptoms.

Martz, who has largely recovered after long-term antibiotic therapy, is a believer - so much so that the Colorado Springs doctor started a practice focused on chronic Lyme disease. A past president of the Colorado Medical Society, the 65-year-old Martz now finds himself on medicine's fringes. The debate boils down to hope. Are patients diagnosed with chronic Lyme disease being given false hope and wasting money on years of treatment? Or are doctors who don't believe in the condition denying ill and often desperate patients hope when there could be some?

"Rather than close the mind, where's the harm in saying maybe there's another dimension to it?" Martz said. "Let's think out of the box, as the saying goes, and stay open to the possibility that maybe this is more complicated than we realized."

Martz grew up in small town Illinois and moved with his family to Las Animas, Colo., in the Arkansas Valley, in 1956. His father, a Baptist minister, wanted him to follow in his footsteps. But Martz, seeking to combine his scientific interests with a humanitarian bent, chose medicine as a career.

A 1965 graduate of the University of Colorado Medical School in Denver, Martz moved to Colorado Springs in 1970 and over the decades practiced internal medicine, oncology and hematology. He was a hospice medical director and part-time hospitalist when he fell ill. The initial diagnosis was a motor-neuron disease of unknown cause, possibly ALS. Lyme disease was considered, but blood samples sent to the Mayo Clinic were negative for Borrelia burgdorferi, the corkscrew-shaped bacterium that causes Lyme. One doctor put him on a month of antibiotics as a treatment for Lyme anyway, but it didn't help.

His legs became weaker, and symptoms spread to his hands and shoulders.

"He fairly quickly was unable to rise from a chair by himself or fully dress himself," said Martz's wife, Dee.

He met all the clinical criteria for amyotrophic lateral sclerosis, or ALS. It's a disease that's difficult to diagnose in the early stages. There is no one test or procedure to establish the diagnosis. And there is no cure.

Dee Martz, a licensed professional counselor, had lost her previous husband to a fast-moving cancer. This would be slower. David Martz's muscles would waste away, but his mind would stay clear, trapped in an increasingly paralyzed body.

"The reality of what life would look like with ALS was very stark," Dee Martz said.

The newspaper article David Martz received offered a sliver of hope. It quoted a Lyme specialist saying the usual tests are inaccurate; more sensitive testing is required.

So Martz turned to a laboratory known for that specialized testing, IGeneX Inc., in Palo Alto, Calif. A conventional antibody test came back negative. But IGeneX also did a urine test, using a method questioned by federal health agencies in a warning last year against testing that hasn't been validated. It was positive.

Martz became a patient of Dr. William Harvey, a Lyme specialist in Texas. He began intravenous antibiotic therapy in January 2004.

By then, Martz said, he was "basically homebound." "I could walk maybe a hundred yards. I could stand only five minutes, at which point I would begin to shake and had to sit down."

His stamina improved within a month of beginning treatment. In three months, he could stand unassisted for longer periods, and do deep knee bends. In six months, he was much as he is now, his strength and energy about 75 percent of what it was before he fell ill.

With his rapid progress, he became Harvey's star patient.

"Nobody I know of has gotten that much better that fast," Martz said.

Martz retired when he became ill. In January 2005, feeling better and wanting to help others, Martz opened a new practice, Rocky Mountain Chronic Disease Specialists.

His stamina still isn't what it was, Dee Martz said, and she worries he could be endangering his health by continuing to push himself.

"But he feels so strongly that his gift of life is something he wants to pass on to others," she said.

Martz has seen about 350 patients in the first year: roughly 70 with neurological, ALS-like illnesses, the rest with problems such as fibromyalgia or chronic fatigue syndrome. And all are seeking answers.

"The average person has seen 24 previous doctors, and they've been told that they have maybe lupus, but it doesn't fit, maybe MS, but it doesn't fit, maybe psychiatric problems," he said.

About 80 percent test positive for the Lyme bacterium using IGeneX testing and are given the option of long-term antibiotic therapy, Martz said. Those who test negative but still fit "the classical clinical picture" also are offered the therapy, and many improve, Martz said. "That just shows that the testing is not adequate yet."

The therapy is not a cureall, Martz stressed. And, at $2,000 to $3,000 a month, it isn't likely to be covered by insurance, because insurance companies don't commonly recognize chronic Lyme disease.

"You need to go into it understanding that it may not have any benefit at all," Martz said. "But if you wish to try it, we're willing to help you."

Don and Peggy Brown of Yuma, Colo., regard Martz as their daughter's savior.

Sabrina Brown, 18, began having problems four years ago. It began with upper-back pain, but other symptoms began to pile on: acid reflux, blinding headaches, fatigue and cognitive problems, such as confusing colors.

Don Brown said they went to about 80 health care practitioners - doctors, chiropractors, acupuncturists, "you name it."

Ultimately, the answer they got was, "She's female, she's a teenager, her hormones were raging and she was crazy."

Peggy Brown, through Internet research, zeroed in on chronic Lyme disease as a possible explanation. Initial testing was negative. But it all fit, the Browns thought. Then they found Martz.

"That's when the ball started rolling," Don Brown said. Blood samples sent to IGeneX tested positive for Lyme, a diagnosis Martz agreed with when reviewing Sabrina's long list of ailments. Last spring, he started her on intravenous antibiotics.

Today, with her treatment continuing, she is thinking more clearly and her pain is reduced.

"Just everything is better," she said.

The Browns are believers, but in medical circles, the debate rages on.

Those sticking to conventional wisdom acknowledge untreated Lyme disease can lead to a host of ailments, and a small percentage of patients with acute Lyme disease continue to have problems after standard antibiotic therapy.

There is some evidence those problems are not caused by a continuing infection, but by an autoimmune response, in which a person's immune system continues to respond even after the infection is gone. There is no evidence, they say, that long-term antibiotic therapy helps.

"That idea, I believe, has been to a large extent discredited," said Dr. Justin Radolf, a professor of medicine at the University of Connecticut Health Center and an authority on the Lyme bacterium. Some doctors treating chronic Lyme disease may be exploiting patients, Radolf said. Others may be swayed by patients who push for a diagnosis of Lyme over one involving no treatment and little hope.

"People grasp at straws," he said, "and Lyme disease is one they like."

That's not to say there are no cases of persistent Lyme infections.

However, Radolf said, "We don't believe most people have it who are getting that diagnosis."

But Dr. Raphael Stricker, a San Francisco hematologist and a leading voice in the other camp, regards chronic Lyme disease as a growing public-health issue.

Stricker is president of the International Lyme and Associated Diseases Society, which maintains Lyme disease is prevalent across the United States. Among his patients are best-selling author Amy Tan ("The Joy Luck Club"), who has written about her battle with chronic Lyme disease.

The Lyme debate is politically driven on the government's side, Stricker believes. Some people in the infectious-disease community, he said, maintain that acute Lyme disease is easily treatable and chronic Lyme is rare or nonexistent. "And they don't want to admit that they're wrong."

Despite the gulf separating the sides, Martz shies from calling it a controversy, preferring to say it's a complex issue awaiting answers.

"Unresolved is a very good word to describe this." ---

 
At Fri Jan 18, 09:28:00 AM, Anonymous pityforilliterateMDs said...

Medstudentgod, that's a rather anonymous name too though, isn't it? If you're going to point fingers, at least give your name, address and phone number first.

I'm going to post anonymously because it really doesn't matter who I am.

At the risk of creating total 'personal-stories-fatigue', I am going to very briefly say two things:

1. I wasted 15 years of my life due to my trust in non-LLMDs for lack of a better word. Despite living in tick and Lyme infested area, and having multiple EM rashes, I tested negative, even when I was deathly ill, with what I years later now know was Lyme then, and Lyme still.
Four years on antibiotics after having STUMBLED onto an LLMD, I'm tons better. Like thousands of others, I am now so grateful to 'our precious LLMDs' who do not tow the IDSA-insurance line without question or inquisitiveness.

2. What always makes me chuckle is when I read statements from MDs who obviously need to keep studying is when they list symptoms of "CFS" or Lyme but always leave out one of our most common Lyme symptoms - RELAPSING FEVERS. You do not get relapsing fevers for years on end from having 'issues in your life', etc...

Keep learning. Keep studying. Listen to the growing number of patients whose lives have been given back by LLMDs. Bad reputations and news travels fast, yet you will consistently see that us LLMD-patients would 'die' for our LLMDs.

BTW, chronic Lyme is not treated with Vancomycin IV.

 
At Fri Jan 18, 10:01:00 AM, Anonymous Editor, Public Health Alert said...

Dear Dr. Dino,

I appreciate your dialog on this issue.

I am the editor of a newspaper called the Public Health Alert.
www.publichealthalert.org

I am thankful for any doctor that will listen and continue to learn.

I know personal opinion does not carry weight, so I would like to offer the following links that will speak in your language.

These are published research journal articles by many of the very same IDSA authors that wrote the 2006 Lyme guidelines saying "chronic lyme does not exist" and that all cases of lyme can be cured in 21 days of antibiotics.

See Links Below

Surely you can see where there is great confusion when the IDSA writers of Lyme guidelines have their own research that contradicts these new guidelines.

Thanks for continuing to learn about this issue!

Dawn Irons, Editor

~~~~~~~~~~~~~~~~~~~

Per The CDC, Lyme Infection Of The Brain, The Borrelia Spirochete Can Become Intracellular In The Brain And Nerve Cells And Is Resistant To Antibiotics.
http://www.ncbi.nlm.nih.gov/pubmed/17045505?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Per Dattwyler- Halperin, Ceftriaxone IV Treatment For Chronic Lyme Failed in 50% Of the cases. This Alone Proves The IDSA Claim Of The Eradication Of Lyme Spirochete In 21 Day's Has No Scientific Background.

http://www.ncbi.nlm.nih.gov/pubmed/2682965?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Dattwyler Say's Additional Ceftriaxone IV will Reduce Fatigue And Improve Quality Of Life But Why Bother.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=12821734&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

ALS Patients Show Serologic Evidence Of Exposure To Lyme Disease

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=2334308&query_hl=24&itool=pubmed_docsum

Klempner, B.Burgdorferi Can Adhere To, Penetrate, And Invade Human Fibroblast.

http://www.ncbi.nlm.nih.gov/pubmed/8486939?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlusDrugs1

Per Allen Steere / Proof That Antibiotic Treatment failed In Aproximatly One Third Of Patients Treated With Multiple Courses Of Antibiotics

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=8769624&ordinalpos=12&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Steere, Maternal- Fetal Transmission Of Lyme Disease Spirochete Borrelia, Type in # 4003991 Into Box On Top Of Page Next To The Word For.


Steere Proves Antibiotics Fail To eradicate All Of The Spirochetes

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=8769624&ordinalpos=12&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Steere Proves Failure To Eradicate Spirochetes After Multiple Antibiotic Treatment. Patient # 12 Died With Spirochetes In Her Brain At Autopsy.

http://www.annals.org/cgi/content/full/121/8/560

Klempner Proves Ceftriaxone Failed To Kill All The Spirochetes Because They Are Intracellular. Living Inside Human Cells. Full text Shows Spirochetes Survived In Petri Dish With Ceftriaxone And No Human Fibroblasts For The Spirochetes To Hide In.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=1634816&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Steere / Yale University, Dept. Of Pathology Assisted With An Autopsy Of A Congenitally Infected New Born Who Died Of, They Believe, The Brain Damage From Congenial Lyme Brain Infection.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=DetailsSearch&Term=4003991[uid]&WebEnv=0Y9FJZWNUmY__BZe0eroXirs44A-OwKWW-yVeN4w4FaTumwDTQJdF2NyV-z1d1W-lL4VDNSmGcyyu@25631EEC6FE066A0_0067SID&WebEnvRq=1

Russel Johnson / US Patent # 4721617 Persistance Of Infection. A Case Of Maternal Fetal Transmission Of B Burgdorferi Resulting In Neonatal Death Has Been Reported. : Once Infection Has Occurred However, The Drugs May Not Purge The Host Of The Spirochete But May Only Act To Control The Chronic Forms Of The Disease. Complications Such As Arthritis and Fatigue May Continue For Several Years After Diagnosis And Treatment.:

http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PTO1&Sect2=HITOFF&d=PALL&p=1&u=/netahtml/PTO/srchnum.htm&r=1&f=G&l=50&s1=4,721,617.PN.&OS=PN/4,721,617&RS=PN/4,721,617

Barbour States Vancomycin Failed To Eradicate B Burgdorferi If Treatment Delayed For 7 Days Or Longer.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=8913478&ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Barbour Say's Antibiotics Cause The Spirochete To Go Into The Spheroplast Stage And Cause An Increase In The Number Of Small Membranous Blebs.

http://aac.asm.org/cgi/reprint/21/5/823?view=long&pmid=7103461

Steere Treats Chronic Lyme Long Term With Plaquenil And sulfasalazin,( Antbiotics )

http://www3.interscience.wiley.com/cgi-bin/fulltext/113383826/PDFSTART?CRETRY=1&SRETRY=0

Seronegative Chronic Relapsing Neuroborreliosis

http://www.lymecryme.com/Seronegative%20Chronic%20Relapsing%20Neuroborreliosis.pdf

Seronegative Chronic Relapsing Neuroborreliosis( PUB MED )

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=7796837&ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

 
At Fri Jan 18, 04:23:00 PM, Anonymous bob said...

Dr. Dino,
You got a real education. The term LLMD is figurative and shouldn't be taken too literally. Chronic Lyme is very real. Thousands of us are suffering and even dying because the Lyme bacterium is so hard to isolate and the insurance company lobbyists are demanding absolute visual proof to save money. Lyme often becomes a brain infection which does a great deal of damage while remaining difficult to detect. Please keep an open mind. Bob in New York

 
At Thu Feb 21, 09:29:00 PM, Anonymous Anonymous said...

""I think at some point, the idea of "an answer" becomes more attractive than "we still don't know", even if there's little solid science to support it."" by dino

" chronic lyme doesnt exist" by dino too

the second sounds like an answer to me ..

play the man who knows, with the very limited knowlagde , such that he can say vancomycin iv is being used to cure lyme ..
even the dogs who had lyme learned by this time that they r being treated with other abx ..

 
At Tue May 20, 08:56:00 AM, Anonymous Anonymous said...

#1 D. is truely OLD school; and is left far behind by the advancement of disease knowledge. Self-rightousness and obviosly false humility i.e. "not afraid to admit..." and the whole ignorance is bliss thing are the mantra of such false teachers. Read anything, with evidence backing it up, written a few years after the new millineum (not exactly cutting edge) on lyme; and you will surely know that this is among the many "esablishment" sites designed to mislead the population for purposes soon to be made known. Let no man fool you.

 

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