Why Recommending a Doctor Can Be Tricky

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RitaA
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Joined: Thu 1 Jul 2010 8:33

Why Recommending a Doctor Can Be Tricky

Post by RitaA » Sat 29 Mar 2014 18:37

I was debating whether or not to post some material here on LNE, and decided not to do so after reading some rather mixed reviews about the author by some of his patients -- both past and present.

This illustrates (at least to me) some of the hazards of recommending a doctor to a fellow patient -- who might well end up with a totally different opinion about that individual.
We found the staff rude & incompetent in all paperwork. If we didn't stay on top of them, we were forgotten. Exam rooms not clean. xxx was my daughter's primary-care physician while treating her for tick-borne infections, but never once in six years gave her a basic physical, indeed he only took her blood pressure three times. She had to constantly correct his notes and medication lists. Treatment began well, but after two years of partial success, he began to jump around with many different meds, following fads, while not paying attention to what she was already on. When this caused havoc and she was hospitalized, he was unreachable, then he seemed to derail, became distant and disdainful. Some weekends spent with [an organization] entitled him to a self-perceived power, and now he calls himself the nation's leading Lyme-literate dr, though no longer even a member of ILADS or under any watchful eye, it seems. Many of his ex-patients no longer recommend him. We certainly do not.
I find Dr. xxx to be professional, and brilliant. He is committed to giving his patients the best quality of care. I have witnessed him going out of his way to make my care and all his patients care exceptional. It is rare to find a Doctor who is willing to work so hard to help cure and heal there patients. I feel so blessed to find Dr. xxx who is willing to work so hard to help cure and heal his patients. In addition his knowledge of integrated medicine is exceptional. If your goal is to be well, fell better and have a full complete life then I would highly recommend Dr. xxx to be your Doctor.
I was in terrible shape at the time of my diagnosis and while I'm not completely well yet I am on the road to recovery. Dr. xxx has been a huge part of my progression. He's a physician who has the knowledge to guide me through this complex disease while also allowing me to be a part of the conversation, make choices, and learn along the way about the full scope of wellness (body and mind). There is a lot of information out there, too much for any one person to understand and absorb, including physicians. Dr. xxx encourages patients to take an active role in their recovery and will consider information brought to him by patients and other providers. This is critical - that he has an open mind and willingness to support an individual on their journey. In addition, I am easily able to understand his suggestions and guidelines as he gives an outline and list of instructions after each visit that I find very helpful. He and his staff are prompt in responding to emails or calls.
Although he had beeen a member of ILADS for 1-2 years, and knew I had a 28 year history of CNS infection with Lyme, as well as babesiosis, he told me there was a 90% chance he could cure me within nine months. Instead, he destroyed my health by treating me with aggressive antimicrobial therapy for 12 out of 14 months, resulting in neurotoxic herxing from which I never recovered. I called multiple times in a suicidal panic. But six months after I stopped treatment, and still tried to give him the benefit-of-the-doubt, he couldn't remember whether I had herxed under his "care." Although I notified him in the summer of 2009 that Frye labs was not detecting Bartonella or Bartonella-like organisms, he continued to order smears and treat patients for Bartonella or BLOs on the basis of those smears. At that final visit, he couldn't even recall whether one the most commonly prescribed antimicrobials for Lyme was bactericidal or bacteriostatic. Dangerous if you have advanced Lyme.
I saw Dr. xxx over about 2 years, with long breaks since I got very sick from lyme treatment and had to recoup each time. I dont blame him for this. At first he seemed knowledgeable in treating lyme, and seemed careful and I trusted him. After about a year, he did a training in xxx, and sent a letter to all patients saying that he could travel to the world of our souls, retrieve lost parts of them and return them to patients. He said he did this by laying on the floor with patients, playing drum music, and traveling to the soul world.He insinuated that one could not heal fully from lyme without doing this work for which he charged about $600/session. At my last appointment, he suddenly and without reason, told me that his intuition told him that he was not the right doctor for me and that I had to leave. He would give no reason. He left me without care and upset. I have since learned that he "fired" many of his sickest patients.
I just started seeing Dr. xxx and it is a nice change of pace to find a dr. with a sense of humor and relaxed aura, and one that doesn't have a huge ego! xxx seems to be a nice guy and was very helpful on my first visit. He pointed out how my previous dr. misread/falsly wrote the wrong lab results down. I told him I was interested in iv antibiotics and he told me w /out lab results I would not be able to get insurance to pay...he got me the kit for Igenix which my old dr said I couldnt go to b/c I had medicare. He told me that was so wrong! So he has been pretty helpful so far & only reccomended 2-3 diff. supplements that were fairly priced. I ended up having a 2 hour appt. instead of an 1.5 appt, and he didn't charge me anything additional. My only complaint so far is that I really wasn't given clear instructions on when to take meds, what can be taken with what, what time to take what, what interacts with what etc. Anywho, so far I am happy-but we'll see what happens.
I saw xxx for 2 years. I thought he was very knowledgeable. However, he had me on a lot of medication and my family was very worried about me. They thought Dr. xxx was going to kill me. I thought I could trust him with my health and when he found he could do nothing more for me, he cancelled me as a patient. He was rude, and yelled at me like I was a child. I would not recommend him as a doctor because he will not stick it out with you as a patient. He left me high and dry and I was frightened. I was on meds when he cancelled me, I didn't know what to continue to take and not take. It was horrible.
This doctor is the one who helped me get out of years of bed. I have been seeing him for 4 years. In my experience, the Dr.s who have helped me were the ones who didn't need to listen to the problem for an hour visit after visit. They heard me the first time and then fixed it. xxx is exceptional in that he can work with several problems at once, has a drive to fix the problem every bit as strong as the patient who suffers daily from it, and despite his empathetic nature he manages to carry on treating the most difficult patients around AND get them better. Dr. xxx brings every possible resource to his patients as an option. He does what good Dr.s should do, educate and offer options. He also respects the patients decisions. He is a human being and if you treat him with respect and dignity he will treat you the same. Any patient should have half as much compassion for him and his office staff as they have for us.
After seeing multiple docs on E coast who are the 'best' and then also on the W coast those labeled the same, this Doc - also in that category has gotten me to a place where I am no longer bed and couch bound and am back to work and to my life at 80% and still going up!!!! I never thought that would happen. With all the others, I just kept getting worse, or plateaued. I thought I'd be disabled for life. Dr. xxx is a blessing beyond words for me and for this community. I can't advocate strongly enough for him, his clinic his team at his office etc. I had lost hope that where I am now, was even possible. Tears of gratitude instead of despair are now what I have. Thank you.
xxx helped some, but side effects were worse than before I started (and I'm NOT counting herxing). Problems that arose were somewhat ignored. And the fees are outrageous, on top of extra time charged as others have mentioned before. Thanks 5/10 person for mentioning yyy. I think my health will recover.

I cannot recommend Dr xxx. I have referred other lyme patients to him before I knew better and they too felt underwhelmed. He doesn't listen and charges for every second of the appt even if he's called out of the room. If you're booked for a 1/2 hour appt but he gets you out of there in 15 minutes, the charge is the same. I've felt rushed and not heard. I'm an intelligent person, lyme literate and have a good sense of what is occurring, having had this disease for quite some time. He disregards anything that doesn't fit what he feels is going on. Unfortunatly, that has lead to zero improvement in my health despite best efforts. Follow up is tough, often doesn't happen. He could use a RN who's job is to provide great follow up care without further expense when a patient needs 5 minutes. I won't be treated poorly on top of feeling poorly with no gain.
I have to say, after seeing other docs in the xxx area specializing in chronic illnesses, Dr. xxx is the only one has gotten my health turned around. Finances are an issue for me, as he knows this he/we work to prioritize what supplements are most critical and he is supportive of me getting them at his office, supplement store or online - I have never had them "forced on me" as previous person noted. With a couple of other docs in the area - I HAVE had hundreds of dollars monthly in supplements pretty much forced on me, no improvement in health by these others, and absolutely no reply back from their office's when needed. By comparison to these 2 others (not in his same office)and any doctor I have ever seen, he is FINALLY the doc who has listened, been empathetic, seems to care, remembers who I am at each visit, I could go on. I personally offended by the 2 very negative reviews written on here. Their venomous reviews in themselves reflect someone worth discharging!
I had a terrible experience with this doctor. I feel concern for anyone in his care for lymes disease. He was incredibly rude and arrogant. He prescribed very heavy and long term antibiotics for me. When I requested to switch my care to his partner who is a woman, he abruptly discharged me abandoning me in the middle of my treatment putting my health and wellbeing at great risk. I question whether he should be practicing medicine.

Dr. xxx thinks he is God's gift to treating Lyme! He is demeaning and rude and forces his supplements on you regardless of if you need them. He has a huge list of rules you have to abide by in order to be deemed worthy of his presence (though you can wait a LONG time to see him: to make appts. and at the office). If you have questions, you better ask them while you're there, because forget calling later (even if you're having reactions to aforementioned supplements)! His staff is rude and condescending and will tell Dr. xxxs lies to get you banned from his office. Save your money in zzz and go see Dr. yyy instead.

Dr. xxx is very thorough, and makes a very logical plan to treat complex problems. He is kind and makes you feel that he really cares about what happens to you as a person. Good listener.
After yrs of being sick and going through a litany of doctors, xxx (as he prefers to be called) is like a wonderful, personable medical detective. He takes all the pieces and makes sense out of them in a connected way. On top of his ability to medically solve issues that so many others docs were not able to do so - he has always also been able to develop a human connection and incredible empathy at the same time. He is a true humanist and incredibly skilled. I've gone from being non-functional to amazingly getting function back in areas that I thought would never be possible again. At first I had hope upon seeing him and the reality is that hope has been absolutely delivered on and I am regaining my life, my relationships and ability to interact with others and do activities I used to love doing and am realizing I still do as I am finding that I am ABLE to do them again. I would recommend him to ANYONE! I've seen others across the country who charge much more, he is worth every penny.

Camp Other
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Re: Why Recommending a Doctor Can Be Tricky

Post by Camp Other » Sat 29 Mar 2014 19:59

RitaA wrote:I was debating whether or not to post some material here on LNE, and decided not to do so after reading some rather mixed reviews about the author by some of his patients -- both past and present.

This illustrates (at least to me) some of the hazards of recommending a doctor to a fellow patient -- who might well end up with a totally different opinion about that individual.
[series of comments from patients snipped for brevity]

So am I to take it the opinions stated were all about the same doctor? Reading them, they could have been about one doctor or several doctors. But I'm taking your post to mean it's about many different patients commenting about the same doctor - correct?

I think this ties into my response to intrepid here: http://www.lymeneteurope.org/forum/view ... f=3&t=5296

It's difficult to recommend a doctor and his approach both because of the tendency in Lymeland to not openly discuss doctors by name (something which actually is not a defacto policy here at LNE, but in general, I find most of the time I am avoiding it anyway) but also because it's difficult to establish a specific set of criteria for what everyone will agree to about who is the best doctor doing the best job for all patients.

Different patients may like one doctor that other patients loathe, and think did an awful job with their case. So based on that, what can one do to assess a doctor before seeing them?

One can gather all these comments and weigh them, but being online how can anyone confirm their authenticity? A review site like Angie's list is one I think must authenticate a person's identity and confirm they are who they are when they post reviews about anything from an auto repair service to a doctor. But it's not clear to me how many of these doctor review sites authenticate their users and confirm they are who they are - leaving it open to discussion as to whether or not comments posted are from actual patients, or if one patient with a grudge posted multiple negative comments so as to appear there are many unhappy patients, or if someone not even a patient came in to vandalize comments on a whim. Same applies for having a lot of glowing reviews - how do we know if they are all authentic? It can never be clear what happened if those who comment either do so anonymously or are not authenticated by a third independent party.

I take a lot of these online comments with a grain of salt because it isn't 100% certain different patients have always written them. If I am looking for a new doctor, I start with talking to other people in support groups locally who I know are seeing local doctors, and listen to their opinions and experiences rather than going online to seek out that feedback. Talking to people in person also adds that layer of facial expressions and tone when one gives a review that one cannot get out of reading comments online.

One thing to do in tandem with talking to people in support groups is to do your own investigation and learn what you can about a doctor before seeing them: Check out their record with the state health board (or provincial, or canton, or whatever regional health board one can access). See if they had malpractice suits. See if they had to go to court for some reason and why. If their care seemed negligent and they caused harm, then cross them off your list and don't see them. If any court case seemed to be based on someone trying to disrupt their practice only because of technicalities or because they treat patients with long term antibiotics - but there is no evidence of negligence or harm caused - then as a patient you may decide those charges against them were uncalled for and see the doctor in question anyway. Conversely, also see if the doctor won any awards, and see what credentials they have - look at their educational background, associations, research/papers, and any voluntary work they've done and if it helps support patient groups.

I think it's important, though, to not see just any doctor who claims they can cure one's Lyme - to set one's standards so low that one is willing to see anyone just because they state they are Lyme-literate. There have been a few doctors (and even people who have no medical degree or professional experience at all) who have claimed to be Lyme-literate but in actuality knew nothing much about it at all, and were the equivalent of the man banging on the drums who decided to let his sickest patients go because whatever he was doing didn't help them.

I think that if you are going to see a doctor, set your standards at a reasonable level and seek out the best doctor you can afford (not just in money, but in time to travel there and wait lists) and also look inside and check in with yourself periodically and ask if treatment is genuinely helping or if a change is needed. This is particularly crucial when you are dealing with a condition (or conditions) which is/are complex and not well understood, and where doctors are doing their own research and making their own best educated guesses and hypotheses on how to approach treating your individual case.

If you're unhappy with the treatment you're receiving, tell the doctor why in constructive terms, and ask them to partner with you in finding resolution. If they are unwilling to find resolution together, then it's time to seek out a new doctor. Get a copy of your records and take them with you, and begin networking with other patients to find a doctor who is better suited to treating your condition but also working with you as a partner in care.

RitaA
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Joined: Thu 1 Jul 2010 8:33

Re: Why Recommending a Doctor Can Be Tricky

Post by RitaA » Sat 29 Mar 2014 20:38

Camp Other wrote: So am I to take it the opinions stated were all about the same doctor? Reading them, they could have been about one doctor or several doctors. But I'm taking your post to mean it's about many different patients commenting about the same doctor - correct?
Yes, incredibly enough, the reviews are all about the very same doctor.
Camp Other wrote:I think this ties into my response to intrepid here: http://www.lymeneteurope.org/forum/view ... f=3&t=5296
Your response to intrepid is what inspired me to create this separate thread.
Camp Other wrote:It's difficult to recommend a doctor and his approach both because of the tendency in Lymeland to not openly discuss doctors by name (something which actually is not a defacto policy here at LNE, but in general, I find most of the time I am avoiding it anyway) but also because it's difficult to establish a specific set of criteria for what everyone will agree to about who is the best doctor doing the best job for all patients.
Agreed.
Camp Other wrote:Different patients may like one doctor that other patients loathe, and think did an awful job with their case. So based on that, what can one do to assess a doctor before seeing them?

One can gather all these comments and weigh them, but being online how can anyone confirm their authenticity? A review site like Angie's list is one I think must authenticate a person's identity and confirm they are who they are when they post reviews about anything from an auto repair service to a doctor. But it's not clear to me how many of these doctor review sites authenticate their users and confirm they are who they are - leaving it open to discussion as to whether or not comments posted are from actual patients, or if one patient with a grudge posted multiple negative comments so as to appear there are many unhappy patients, or if someone not even a patient came in to vandalize comments on a whim. Same applies for having a lot of glowing reviews - how do we know if they are all authentic? It can never be clear what happened if those who comment either do so anonymously or are not authenticated by a third independent party.
I'm only registered at one doctor rating site, and people there do have to provide personal data before posting reviews or other comments. That said, someone at an internet café could (in theory) register multiple times and therefore post any number of reviews -- whether positive or negative.
Camp Other wrote:I take a lot of these online comments with a grain of salt because it isn't 100% certain different patients have always written them. If I am looking for a new doctor, I start with talking to other people in support groups locally who I know are seeing local doctors, and listen to their opinions and experiences rather than going online to seek out that feedback. Talking to people in person also adds that layer of facial expressions and tone when one gives a review that one cannot get out of reading comments online.
Yes, the face-to-face aspect is VERY important to me as well. Even then, patient experiences can be very different. I would rate one of my surgeons as being highly professional, competent, caring and overall a wonderful doctor. My friend's daughter saw that surgeon and she described her as being cold and dismissive. Granted, my friend's daughter's opinion was based on one office visit as opposed to my multiple office visits and 3 surgical procedures, so that could account for part of it. Differences in our personalities and expectations regarding medical professionals could play an even bigger role.
Camp Other wrote:One thing to do in tandem with talking to people in support groups is to do your own investigation and learn what you can about a doctor before seeing them: Check out their record with the state health board (or provincial, or canton, or whatever regional health board one can access). See if they had malpractice suits. See if they had to go to court for some reason and why. If their care seemed negligent and they caused harm, then cross them off your list and don't see them. If any court case seemed to be based on someone trying to disrupt their practice only because of technicalities or because they treat patients with long term antibiotics - but there is no evidence of negligence or harm caused - then as a patient you may decide those charges against them were uncalled for and see the doctor in question anyway. Conversely, also see if the doctor won any awards, and see what credentials they have - look at their educational background, associations, research/papers, and any voluntary work they've done and if it helps support patient groups.

I think it's important, though, to not see just any doctor who claims they can cure one's Lyme - to set one's standards so low that one is willing to see anyone just because they state they are Lyme-literate. There have been a few doctors (and even people who have no medical degree or professional experience at all) who have claimed to be Lyme-literate but in actuality knew nothing much about it at all, and were the equivalent of the man banging on the drums who decided to let his sickest patients go because whatever he was doing didn't help them.

I think that if you are going to see a doctor, set your standards at a reasonable level and seek out the best doctor you can afford (not just in money, but in time to travel there and wait lists) and also look inside and check in with yourself periodically and ask if treatment is genuinely helping or if a change is needed. This is particularly crucial when you are dealing with a condition (or conditions) which is/are complex and not well understood, and where doctors are doing their own research and making their own best educated guesses and hypotheses on how to approach treating your individual case.

If you're unhappy with the treatment you're receiving, tell the doctor why in constructive terms, and ask them to partner with you in finding resolution. If they are unwilling to find resolution together, then it's time to seek out a new doctor. Get a copy of your records and take them with you, and begin networking with other patients to find a doctor who is better suited to treating your condition but also working with you as a partner in care.
You have provided an abundance of good advice for anyone seeking a doctor of any kind, and I thank you for taking the time to post it all here.

duncan
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Re: Why Recommending a Doctor Can Be Tricky

Post by duncan » Sat 29 Mar 2014 20:49

This is a good topic. I suspect there is less hazard recommending a favorite restaurant to your boss, than recommending a doctor for any controversial illness to anyone, including individuals wrestling with tbd's.

Personally, I look for a doctor who is willing to listen and learn. They are few in number, though, at least in my experience. I am pretty certain, too, that should I ever recommend one of those open-minded few I have been fortunate to find, that physician will pick the patient who sought my advice, at that particular appointment, to prove condescending and pedantic and intractably wrong at the patient's expense.

Can't escape the human factor, especially where this crazy disease is concerned. If anything, the human factor as it relates to the clinician, because of the risky variables at play, is amplified. So, consistency is often a casualty.

And recommending a doctor becomes as scientific as an act of divination.

Camp Other
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Re: Why Recommending a Doctor Can Be Tricky

Post by Camp Other » Sat 29 Mar 2014 21:42

RitaA wrote:
Camp Other wrote: So am I to take it the opinions stated were all about the same doctor? Reading them, they could have been about one doctor or several doctors. But I'm taking your post to mean it's about many different patients commenting about the same doctor - correct?
Yes, incredibly enough, the reviews are all about the very same doctor.
Whoa. Wow. That's crazy. They are all very different opinions with different angles.
RitaA wrote: Yes, the face-to-face aspect is VERY important to me as well. Even then, patient experiences can be very different. I would rate one of my surgeons as being highly professional, competent, caring and overall a wonderful doctor. My friend's daughter saw that surgeon and she described her as being cold and dismissive. Granted, my friend's daughter's opinion was based on one office visit as opposed to my multiple office visits and 3 surgical procedures, so that could account for part of it. Differences in our personalities and expectations regarding medical professionals could play an even bigger role.
Nods. To a certain degree, I think everyone talking to other patients is also evaluating whether or not they are going to weigh those patients' opinions in the same way. We're likely to stick with the opinions of someone else whose situation is most similar to our own, and who holds values which are similar to own. Not necessarily in a sociopolitical context, but in a medical/health-based one.

If you want evidence-based treatment and are a strong supporter of scientific method, more than likely you'll seek out other patients who want the same. If you are okay with alternative medicine or, even more than okay and value it above and beyond mainstream medicine, then you'll seek out the opinions of other patients who want the same.

Those who want to base their treatment solely on evidence-based approaches and not empirical approaches or alternative medicine will likely have a more difficult time finding a doctor to treat them if there is no standardized treatment available and research on their condition is very limited. Whether you call the condition you have chronic Lyme disease or post treatment Lyme or post Lyme, it's the same problem: There is little scientific research available on validated treatment which works, and only a subset of patients have responded to longer term antibiotic treatment. So, in that position, one can make the individual decision to try longer term antibiotic treatment, knowing there is at least some evidence to support there will be some improvement - especially in fatigue.

Past that, whatever decision one can make from an evidence-based perspective is more difficult. I think after that once a patient with an evidence-based bent is seeing improvements, then they'll have to weigh the value of continuing that treatment or trying something else based on their own individual experience. And this is where things can get difficult, because one has to sort out with the help of an experienced professional whether or not their remaining symptoms are due to tickborne disease, due to side effects from treatment, or due to something else (or possibly a combination of things.) There is no manual for this from what I can tell. The only guidance to apply here is patient's own self knowledge and tracking of their improvements and symptoms in response to treatment as well as any objective tests which can pinpoint problems (elevated liver enzymes, WBC, IgM/IgG levels, etc.) and the experience of the specific doctor working on their case.

Given the lack of much needed research, those who are comfortable with empirical treatment or alternative medicine will be more likely to find a doctor they are comfortable with when there is no standardized treatment available. A high number of doctors who currently are known for treating tickborne diseases and persisting symptoms related to them at least apply some alternative medicine and an empirical approach or label their practice as being integrative medicine - even if they are not a naturopath and are, say, an internist or family doctor.

Camp Other
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Re: Why Recommending a Doctor Can Be Tricky

Post by Camp Other » Sat 29 Mar 2014 21:58

duncan wrote:This is a good topic. I suspect there is less hazard recommending a favorite restaurant to your boss, than recommending a doctor for any controversial illness to anyone, including individuals wrestling with tbd's.
Applies to any serious or chronic illness, in my opinion. If I had cancer, it's far more important to me that someone refers me to a good oncologist and for that to work out than to have someone else's favorite restaurant referral go sour. Priorities.
duncan wrote: Personally, I look for a doctor who is willing to listen and learn. They are few in number, though, at least in my experience. I am pretty certain, too, that should I ever recommend one of those open-minded few I have been fortunate to find, that physician will pick the patient who sought my advice, at that particular appointment, to prove condescending and pedantic and intractably wrong at the patient's expense.
Nods. This is a difficult situation, and both you and RitaA have explained well what the problem can be. Still, one must find a way to offer a constructive opinion about one's own experience with their doctors so that others have at least a starting point. It might be more sensible to refer a doctor based on their approach (evidence-based, empirical, alternative, how seriously alternative, etc.), their cost, their wait list times - more objective measures - and then separately state something to others like, "If you're the kind of patient who is ______ then you will like/loathe Dr. ____ based on what other patients in his practice have said to me." And then let it go at that. That way, they'll have the basic facts upfront, which is less subject to interpretation, and then the subjective judgements can be viewed separately.
duncan wrote: Can't escape the human factor, especially where this crazy disease is concerned. If anything, the human factor as it relates to the clinician, because of the risky variables at play, is amplified. So, consistency is often a casualty.
Yep. This is always going to be the case where health care is involved. I don't think it's even because the area of tickborne disease is crazymaking or controversial. I think it's because there is currently such a diversity of opinion out there and a firehose of data coming in all the time about biology and microbiology that no one has the time to sort through it all. What many people once thought were solid views to stand on are now heavily questioned; challenged. And on top of it all, the model of doctor-patient relationships has been shifting from one of a top-down, authoritarian relationship to one which is more patient-centered, or at least one where the doctor and patient partner together in devising a testing and treatment plan.

Consistency is a casualty in more ways than one. It isn't just a tickborne-diseases related lack of consistency at play here. It's the fact that the practice of medicine and its authority and role in patients' lives is also inconsistent and evolving, on top of whatever medical controversies are present.

TwiceBitten
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Re: Why Recommending a Doctor Can Be Tricky

Post by TwiceBitten » Mon 31 Mar 2014 22:30

RitaA wrote: This illustrates (at least to me) some of the hazards of recommending a doctor to a fellow patient -- who might well end up with a totally different opinion about that individual.
Telling people to stay away from Hopkins is a safe bet.

Camp Other
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Re: Why Recommending a Doctor Can Be Tricky

Post by Camp Other » Tue 1 Apr 2014 0:59

TwiceBitten wrote:
RitaA wrote: This illustrates (at least to me) some of the hazards of recommending a doctor to a fellow patient -- who might well end up with a totally different opinion about that individual.
Telling people to stay away from Hopkins is a safe bet.
Why, though? People probably could use more specifics than that in making a decision.

Is it cost? Is it that the doctor-patient relationship is more authoritarian rather than patient-centered? Is it that a specific doctor has a record of being condescending or denies/doubts patients have Lyme disease?

Or is it something else?

I've been following some of the research done on Lyme disease via Dr. Aucott at Hopkins, and think some of the research he's doing is worthwhile. He's trying to characterize patients with chronic Lyme disease, including their immune system profile, and is also educating others about just how poor quality of life can be for patients with it.

But he's not all of Hopkins, and I doubt what he does can characterize all of what that institution does. I say the same when people make a blanket statement of how horrible Yale is, and to never trust anyone in Lyme who is associated with or worked at Yale. Then I point out that Dr. Stephen Barthold worked at Yale and Dr. Eva Sapi was at Yale and suddenly their tone changes.

TwiceBitten
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Re: Why Recommending a Doctor Can Be Tricky

Post by TwiceBitten » Tue 1 Apr 2014 1:40

Camp Other wrote:
TwiceBitten wrote:
RitaA wrote: This illustrates (at least to me) some of the hazards of recommending a doctor to a fellow patient -- who might well end up with a totally different opinion about that individual.
Telling people to stay away from Hopkins is a safe bet.


I've been following some of the research done on Lyme disease via Dr. Aucott at Hopkins, and think some of the research he's doing is worthwhile. He's trying to characterize patients with chronic Lyme disease, including their immune system profile, and is also educating others about just how poor quality of life can be for patients with it
You have good points to make, and I'm well aware of Dr. Aucott's work. I was referring to Dr. Auwaerter, if you need to name names. Dr. Aucott does seem to be trying to make some strides toward helping the patients in a proactive manner, whereas others only seem to criticize and offer no solution and no efforts to coming to a diagnosis or meaningful treatment. It's a slipperly slope. The patient abuse by some doctors needs to stop, as was written in the Lancet article, but the patients need treatment as well and have no where to go but the doctors and groups who were criticized in the same article. Who's causing more harm? I don't know.

I read of Tosho who used to post here, and I see the false information given to him by Henry. It saddens me greatly to read of patients being given detrimental medical advice. They have no where to go for help.

Camp Other
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Re: Why Recommending a Doctor Can Be Tricky

Post by Camp Other » Tue 1 Apr 2014 4:30

TwiceBitten wrote: You have good points to make, and I'm well aware of Dr. Aucott's work. I was referring to Dr. Auwaerter, if you need to name names.
Ah. Yes. Him. I've seen a few interviews with him on network TV and so far, nothing he's said has either been original or useful. A lot of it has been a repeat of what a lot of these letters and editorials in the Lancet and other publications have said about LLMDs, Lyme disease advocacy organizations, and activists. I would fall over if he came forward and announced a new study on helping characterize patients or even more so, a treatment study. It's been years of the same thing from his corner - basically absolutely nothing new. Nothing actionable.

At least Dr. Lantos (of the same papers/crowd) has made a statement that curiously, there isn't enough treatment research for patients with chronic Lyme disease in general - even though at the same time he says that nearly half of all people who say they have chronic Lyme disease have no history of having had Lyme disease. From what I can tell, his statement is largely made based on a study of one hospital clinic in one state for one period of time of about 800 patients. (If anyone knows what Lantos has referred to in making his 50% claim outside of that study, please let me know.)
TwiceBitten wrote: Dr. Aucott does seem to be trying to make some strides toward helping the patients in a proactive manner, whereas others only seem to criticize and offer no solution and no efforts to coming to a diagnosis or meaningful treatment.
Yep. Which is why I'm following Aucott's research, and seeing what he learns just by trying to describe the terrain, define what symptoms and limitations encompass chronic Lyme disease without focusing so much on its cause. He comes across as being sincere in his efforts to help people and solve problems.

Whereas Auwaerter and his ilk seem to want to stoke up controversy in the media and in letters and editorials - rather than take action which may help patients. If they are actually taking positive actions to help patients behind the scenes, this is something that I never hear about either in the media nor through publications on observational studies and treatment trials for patients with chronic Lyme disease. The vast majority of anything I come across from that crowd is more about what not to do than what to do.
TwiceBitten wrote: It's a slipperly slope. The patient abuse by some doctors needs to stop, as was written in the Lancet article, but the patients need treatment as well and have no where to go but the doctors and groups who were criticized in the same article. Who's causing more harm? I don't know.
And mainstream medicine as well as timing have painted patients into a corner. Here we are, some people are helped by longer term antibiotics and some recover with them. Someone should be studying those patients as they are being treated by their doctors rather than being told, "no, what you're doing is WRONG' or "you're wrong, what you're experiencing is a placebo effect". People know whether or not they're experiencing an improvement. And if they are, and if someone wants to confirm they are, they could be tracked and their symptoms monitored, pain levels measured, stamina tested, immune profile tests completed periodically - and some third independent party could confirm both objective and subjective improvements in specific patients who they follow.

Instead, what we get are years and years of those Lancet editorials and letters which demonize just about everyone who is helping patients with chronic Lyme disease - either LLMDs, or Lyme disease advocacy organizations, or activists. Do they actually think those of us who have sought out the help of LLMDs and organizations are going to listen to their complaints against them? I can't believe that would be the case. Everyone I know is angry with their editorials and letters, and resents their accusations. If anything, their editorials and letters have helped them get more vocal opponents from the patient community.

Those editorials and letters aren't written to warn patients against seeing LLMDs and to see someone else. Those letters and editorials were written as if they were almost oblivious to patients. Their real motive is to tell the rest of the medical community what they think of LLMDs, Lyme disease advocacy organizations, and chronic Lyme disease. It's to get them riled up and steamed about LLMDs and organizations - NOT to illuminate the fact that 10-20% of all Lyme disease patients have persisting symptoms and some experience a severe impact on their lives. That somehow NEVER gets to be the primary message.

Nor does anyone writing those letters and editorials seem to want to call for a new study to evaluate whether 10-20% is in fact an accurate percentage of cases which persist. What year was that estimate made, and on what grounds? With 300,000 or more cases of Lyme disease in the US annually, plus more cases in the rest of the world - maybe it's time to reexamine that estimate. Do we really know how many people have persisting symptoms? Or coinfections? This is very basic research. And it's something we need to have updates on and be informed about.

Re treatment: We keep getting repeated lectures about long term antibiotic use - however well reasoned they are, because face it, we DO have a worldwide problem with antibiotic resistance and it is only getting worse (e.g. MDR-TB, MRSA, VRE, and other horrible infections which in their acute stage can kill people) - yet no one making complaints about it is conducting any alternative non-antibiotic treatment studies for patients. Personally, as long as they weren't studies using steroids, I'd probably be okay with enrolling in some non-antibiotic treatment studies. I think given my immune deficiency, an immune modulating drug could help me whether I have an active infection or not. I think most of these kinds of drugs could also be given to patients alongside antibiotics. But no one is specifically doing research on such a drug. Why not?

On the other hand, if I were to see an herbalist and experiment with herbs, I could get criticized for trying them to ease my symptoms because their use isn't evidence-based. Yet as a patient, I could sit here and say to those who do not support the use of long-term antibiotics, "Hey, at least I'm not contributing to antibiotic resistance, right?"

It seems like you can't win as a patient. No matter what personal treatment decision you make, someone will want to criticize it (usually someone on the other side of the chronic Lyme debate, but also sadly people on the same side). If you take long-term antibiotics, Auwaerter and his colleagues will argue against their use. If you try herbs, they and those who want evidence-based treatment will argue against their use. But who is really willing to put their money where their mouth is, and say they care about patients enough to give them other options that are evidence-based, to do additional treatment research such as study patients who are already in treatment and improving or study new non-antibiotic treatments for those who either can't handle antibiotics or plateaued?

By not doing these studies and this kind of research, they are perpetuating the very problems they complain about and practically encouraging patients to continue to see LLMDs and support the organizations they criticize. They have nothing to offer patients. Nothing that helps, except maybe Neurontin/gabapentin for those people who find it helps and can tolerate it.
TwiceBitten wrote: I read of Tosho who used to post here, and I see the false information given to him by Henry. It saddens me greatly to read of patients being given detrimental medical advice. They have no where to go for help.
Nods.

I didn't notice which information Henry had given to Tosho one way or the other. Sometimes people independently make conclusions which are similar to others who write here, like Henry, so I am not always sure whether or not influence/information from others was involved. A number of people come to this forum who already know what their position is and what they think about chronic Lyme disease, and discuss it or argue about it from that point of view.

It saddens me that there aren't more scientists and research who originally have NOT been involved in the chronic Lyme disease debate who decide to step in and break up the decades of argument which have been going on by doing their own research. When I saw Dr. Kim Lewis step in and get involved in persister research in Lyme disease, for the first time in a long time I smiled. Because this wasn't originally his arena, his issue to study - and he was intrigued and got involved. The microbiology community at large respects Lewis' work. So what he does here matters, and matters more because I think he does not have a history of wanting to get involved in Lyme disease politics either way. He just wants to learn about what's happening through research.

We need more people like him to start doing research, for new faces to break new territory and stop having the same small group of people doing the same kind of research. Innovation is needed here as well as some very basic research about patients which hasn't gotten the attention it needs.

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