Tuesday, December 22, 2009

Doctor: I want a Lyme disease test

A patient comes in to the office. Let's say he or she is 5o years old. Many friends and family members have Lyme disease, he wants to know if he has it too. He is generally well but complains of some aches and pains. His joints hurt occasionally, especially after exercise, but recover quickly. His energy level and sleep are good. When asked about memory and cognitive problems he pauses for a moment: Perhaps his memory is not as good as it used to be. There has been some decline over several years. Word retrieval is a problem at times. His focus is not as good as it used to be. His mathematical abilities are not as good as they once were but they are OK. There are no other neurological symptoms. He functions normally at work and at home. These mild changes in cognition have occurred gradually over a period of years but are not bothersome.His family history reveals than a parent developed Alzheimer's disease at age 86. A recent physical has been done. His exam and routine lab work were fine. Should he be tested for Lyme disease?


No. Many patients have asymptomatic infection. This could be the case; still, I would not test. Positive results would only open a Pandora's box. These symptoms are mild and likely within the range of what might be expected in a 50 year old. The normal brain is sharper at age 25-35: minimal cognitive changes--neuronal fall out, occur in normal people. Alzheimer's disease? His risk may be slightly greater than that of the general population. Perhaps general recommendations would be made: exercise brain and body--eat well--perhaps drink coffee and take extra vitamin D.

The patients would be given a list symptoms to watch for. Treatment: watchful waiting--a term frequently used by doctors.

23 comments:

  1. What!?! Why and I thought you care about your patients. What if his symptoms are lyme ???? I mean its is quite possibility that infections accelerate the decline .

    Do you really find it acceptable to lose better part of your brain by age of 50?

    If he gets positive IgeneX WB its up to him to decide if he is old enough and doesnt need brain anymore!

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  3. I would agree that if someone isn't actually suffering, there is no sense in subjecting them to all the drugs.

    If he were to say, "My joints hurt all the time and I feel cognitively out of it....could I have Lyme?" then you should test/treat. The fact that he came to the doctor specifically because of symptoms, indicates the severity is there.

    If someone says, "I know a lot of people that have Lyme...should I be tested?"...that is a different kind of question, a question that doesn't imply they are currently suffering or troubled by symptoms significantly.

    If someone is suffering, and feels their life could be better, then you treat.

    For me, it's a no-brainer, because I am in my 20's and am too ill to work even part time, go to school, or be a parent.

    There's a difference between testing positive for bb and having Lyme disease.

    There are some people I see that start a family member on antibiotics, and the level of functioning of that person is so high, that I think to myself, "once I get to that point, I'm saying goodbye to antibiotics and never looking back."

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  4. Hello All,
    I am trying to find out how to actually make an appt. w/ the LymeMD. I live in Wash DC. The blog doesn't lead me to contact info. This is intelligent info, so enlightening. I've been doing so much on my own. After 11 yrs of an unknown condition, it looks and feels like I clearly have Lyme. Please help me. Melissa

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  5. I care about my patients.

    The physician's creed is:

    First do no harm.

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  6. [i]
    I care about my patients.
    The physician's creed is:
    First do no harm.
    [/i]

    Is not doing anything causes harm? thats the question most MD should ask themselves everyday. As mainstream practice prefers to ignore issues until they become an ER case or progress to serious condition .

    I think it is up to patient to decide how much risk he is willing to take for a chance for improvement

    How much exactly medicine achieved in the field of treating chronic disease? Cancer ,Diabetes , MS ,etc etc. How much is really know about the underlying cause of those disease? Why is all that despite the investment of hundreds of trillions of dollars over the course of the years

    Medicine and medical field is a cesspit existing mainly for profit of those involved (pharma, insurance, lawyers and yes yes - even Drs themselves) , making business out of "managing" diseases instead of seeking a cure.

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  7. Would you give the same advice to the 50 year old if the spouse had tested positive for Lyme?

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  8. Angry folks--you missed the point.
    I do not test people unless they are sick--have symptoms of Lyme disease, generally a multi-system disorder.

    This theoretical patient felt well. He asked for a test just because family said he should. His brain is not wasting away. He had no symptoms until prompted by specific questions. Some "normal" might respond affirmatively to many questions, especially if the questioner has a pre-existing mind set.(Sometimes patients tell us what they think we want to hear) If a doctor is not careful he can diagnose every patient with Lyme disease.

    Every one has fatigue at times-- aches and pains. Every one has many of the symptoms listed on the Lyme disease check list. However,if the symptoms are mild and transient Lyme is unlikely.

    Some cases are border line. Clinical judgment determines whether further investigation is needed.

    I am glad you think it is the patient's who take all the risks.

    Physicians may loose their license to practice medicine just for treating obvious cases of chronic Lyme disease.

    Patient's guard their doctors: names are kept off the internet.
    A famous doctor has been kicked out of 2 states and is now setting practice in a third location.

    Normal people has numbness in a limb from a pinched nerve--pain in a joint due to injury, gout or something else. Age related cognitive changes are real and may be related to a host of factors.

    I will not comment further about this blog. Read my other posts. I realize there is a lot of anger out there. Doctors need to use clinical judgment. Not everyone has Lyme disease even it though it seems that way at times.

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  9. I am glad you think it is the patient's who take all the risks.


    No thats not what I said. I really wish it was the case - maybe MDs would be less reluctant to threat

    Like sign a paper stating " will not sue, all decisions are my responsibility" , that would go a long way to actually help those who wants to be helped


    If a doctor is not careful he can diagnose every patient with Lyme disease.

    Every one has fatigue at times-- aches and pains. Every one has many of the symptoms listed on the Lyme disease check list. However,if the symptoms are mild and transient Lyme is unlikely.


    That is not what prompted my anger .What prompted my anger is that you wouldnt recommend him do Igenex WB! Not like it would harm him. You in your mind think he is "fine" - but he might been highly functioning individual before and now he is just "normal" -thats how it looks to you.

    If he came to you his symptoms and concerns are serious enough to at least properly test him. Let him decide whether he wants a test or not. ITS NOT YOUR RIGHT TO DENY INFORMATION

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  10. The point is that there's a difference between testing positive for the bacteria and having Lyme DISEASE.

    The disease is the cluster of symptoms produced by the bacteria, not merely the presence of the bacteria.

    I completely agree with what LymeMD is saying.


    Once those of us being treated get into remission, we won't continue antibiotics, no matter what our testing says, right? Isn't that the idea? Stop when you're well?

    Using that same logic, if someone's well, why give them antibiotics?

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  11. [quote]
    Once those of us being treated get into remission, we won't continue antibiotics, no matter what our testing says, right? Isn't that the idea? Stop when you're well?

    Using that same logic, if someone's well, why give them antibiotics?
    [/quote]

    Define "remission and define "well".

    Say one is highly functioning individual, capable of performing complex tasks and pursuing a challenging career. Then one starts gradually fading away : - memory goes ,focus is not the same, have a significant trouble accomplishment tasks which were easy in past

    In a few years he is shade of his former self. Yeah on paper he is "normal". He is not demented and can all that stuff "normal" people can do (go shopping and watch TV), only he cant do his former job anymore

    This is what is "normal"???? Should he just pray it doesnt progress to MS(or some such) and go flip burgers at McD?

    Fact is Dr's have no idea how to deal with problems which are less subtle than acute trauma. Organ failure -yes they can detect that, they can stabilize people well enough to have pulse and normal 02 levels nowdays. Anything else - they dont look and dont bother .

    Now if one has a chance to resolve his issues and simple test could point him to right path why deny him the possibility?

    Not everything is lyme, but lyme can be ruled out (at least to some degree).

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  12. Feel the passion. Doc you can't post the whole history. ETOH use previous illness, What is the persons diet like. Depression previous TBI. Well, on the cutting edge and Lyme Patients are more aggressive the oncologist. Doctors need to be mor clincial. I sure you will monitor him. Or he'll go get the test anyway. Hey, he got better care than the ID I saw her in my town of ******.

    Enjoy your blog, people are acutally thinking and maybe the funding will come next. -Cheers

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  15. One overlooked fact is that many patients understate their symptoms.

    For years, I'd have aches and pains, weird symptoms, yet would just make an off-hand comment to my doctor about them... which would then end up typically ignored. A lot of doctors just assume patients will exaggerate their complaints, but in many cases it is the opposite. Then once I got really bad, I finally requested Lyme testing. If my doc declined my request, I would have never have gotten treatment. I ended up testing positive for Ehrlicia, Lyme, Ricksetta and Bartonella, by the way.

    In this particular case, the patient seems well, but has commented on some cognitive decline. As a doctor, you really can't tell if he's understating or overstating the symptoms, so I don't understand a hesitation to at least test. It is withholding information from the patient -- if he tests positive for Igenex, and multiple co-infections via local labs, wouldn't it warrant at least considering some sort of treatment then? Or at least leaving it up to the patient if treatment is needed? At the very least, I'd think getting basic Lyme/co-infection tests would be worthwhile, to rule out any tick-based cause. And what if he gets worse? So 5-10 years from now he comes back with even worse symptoms, and then he finally gets tested? I don't understand the logic of 'do no harm' in regard to testing alone, unless you don't trust positive lab tests?

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  16. Well, it seems you've opened the 'box' with this post. :-)

    All good bloggers do this every once in awhile. Love your posts. Always insightful.

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  17. Gotta chime again. History is 99.99% of the diagnosis. This appears to be a normal but concernded patient. I think it takes good clinical judgment to say you don't need the labs. Reassure the patient and send him home. However if he's reading this blog he'll be back first thing on Monday :)

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  18. I love reading this blog! This particular entry has had an effect similar to a Rorschach test. Some people see wisdom while others are seeing an assault on Lyme patients everywhere. I understand both positions.

    First, the strong emotional reactions. Until this past year, Lyme disease was rarely taken seriously by MDs and we patients were basically told (and many still are) that it's all in our heads. So, in light of this, it's understandable that LymeMD's suggestion that the theoretical patient's aches and pains were normal could set off some knee jerk emotional reactions.

    However, LymeMD is saying something very important about the prevalence of Bb infections vs the prevalence of Lyme Disease and this point has been lost on some. It is becoming clear that a significant portion of the population has been exposed to Bb. Not everyone who has been exposed ends up struggling like some of us.

    We are in the midst of a rapid, perhaps too rapid, paradigm shift regarding Lyme. Most MDs have laughed off patients' suggestions they have Lyme for years and years. Now it seems many of these same MDs are poised to jump on a Lyme bandwagon in which everyone has Lyme and every problem in a Bb positive patient can be attributed to the infection. This could prove disastrous as treating Lyme really is an art and can't be done from a cookbook. Bb isn't ALWAYS the main problem and might not be a problem at all in some Bb positive people.

    LymeMD's blogs make it clear that he believes, strongly, in treating Lyme. However, he is not a bandwagon MD who thinks that everyone with exposure to Bb but without symptoms of Lyme necessarily needs to be put on IV antibiotics for three years just in case. Give the guy a break!! As a patient of LymeMD, I can tell you with certainty that he knows what he's doing, takes a balanced and metered approach to treating patients, is quick to admit limitations in his knowledge, is constantly trying to learn more and improve the treatment he provides and, finally, REALLY CARES. Please keep up the good work, Doc!!

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  19. Haters go home!
    We are dealing with such a hard illness we don't need you; your hating comments don't help us at all. Go do your own blog or just shut up.

    Knowledge, positive attitude, Love and good energy is what we need. And this blog is the best we have!!!

    HAPPY NEW YEARS, FULL OF HEALTH FOR EVERYONE and especially to the DOC and his crew, we love you guys!!!!

    See? good prevails! LOL!

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