Need to find a infectious/parasitic disease specialist in NYC
May 3, 2013 6:31 PM Subscribe
My good friend has been searching for an outstanding infectious/parasitic disease specialist in NYC. She has looked online, but it seems every doc has good and bad reference.
She is looking for someone who will *listen* and not write her off as "having to live with it". She wants to eliminate parasites as a possibility. I was thinking of calling up NYC universities (Columbia, Cornell) to get some ideas about good docs, or further diagnosis, as well.
She has been through a number of diagnostic specialists that have pretty much filtered out more commonly understood illness. btw, she's a very grounded person and definitely not a hypochondriac, but she has been very frustrated at not finding the cause of her malaise.
Things like Lyme and a few others have been categorically ruled out, but her on-again, off-again, severely disabling illness (which follows an eerily similar pattern) leads her to believe the next step is to pursue the potential of parasite infection - in her effort to find what it is that has made her life a more-than-occasional living hell for the last several years. Her problems appeared to accelerate after seemed to start after a visit to the American South and Mexico several years ago, where she thought she notice a bug bite, but soon after resulted in her feeling "not quite right". She has thought all along that she might have Lyme, but has been tested twice, with a negative result both times.
I won't go into her diagnostic history, but it has been pretty thorough - she presents with really bad liver stress (500-600% increase in liver panels); high fever; severe, doubling-over abdominal pain; swollen abdomen (which she seems to have at least 4-5 days of every week), and general malaise are what characterize the disease. She describes her abdominal pain as fierce.
One other thing is that she had a Cholecystectomy about 10 years ago, and her gastro told her that it might be related to spasm in her Spinchter of Oddi, and have performed appropriate tests, but they can't be sure. Her cholecystectomy was not an easy one, btw - she had more post-op pain than is usual. She even considered that damage might have been done to a vagus nerve, but tests ruled that out.
She did a food elimination diet and found that she is highly allergic to wheat and corn; this has helped somewhat. She has also considered that she might be celiac, but she's not convinced, and it's very hard to diagnose.
Last, a few years ago, after one of her attacks, she went on a "cleanse routine", using a standard "cleanse" packet she got from a health food store. She noticed little white flecks in her stool when she used the cleanse, but neglected to have them analyzed. Also, just prior to her worst - near life-threatening attacks (3 hospitalizations) she has felt what she describes as a noticeable "fluttering" around her liver area; research says this is a not uncommon phenomena for people with parasite infections. Last, the docs did find that she has two pancreatic ducts - it's a congenital abnormality, but they say it's nothing serious, and ruled it out as a cause of her malaise.
I'm putting in a little detail to provide background, as it might elicit additional paths or ideas for diagnosis. She has traveled internationally, a lot, and some of her symptoms resonate with a general pattern for parasite infection, thus this request.
She is looking for someone who will *listen* and not write her off as "having to live with it". She wants to eliminate parasites as a possibility. I was thinking of calling up NYC universities (Columbia, Cornell) to get some ideas about good docs, or further diagnosis, as well.
She has been through a number of diagnostic specialists that have pretty much filtered out more commonly understood illness. btw, she's a very grounded person and definitely not a hypochondriac, but she has been very frustrated at not finding the cause of her malaise.
Things like Lyme and a few others have been categorically ruled out, but her on-again, off-again, severely disabling illness (which follows an eerily similar pattern) leads her to believe the next step is to pursue the potential of parasite infection - in her effort to find what it is that has made her life a more-than-occasional living hell for the last several years. Her problems appeared to accelerate after seemed to start after a visit to the American South and Mexico several years ago, where she thought she notice a bug bite, but soon after resulted in her feeling "not quite right". She has thought all along that she might have Lyme, but has been tested twice, with a negative result both times.
I won't go into her diagnostic history, but it has been pretty thorough - she presents with really bad liver stress (500-600% increase in liver panels); high fever; severe, doubling-over abdominal pain; swollen abdomen (which she seems to have at least 4-5 days of every week), and general malaise are what characterize the disease. She describes her abdominal pain as fierce.
One other thing is that she had a Cholecystectomy about 10 years ago, and her gastro told her that it might be related to spasm in her Spinchter of Oddi, and have performed appropriate tests, but they can't be sure. Her cholecystectomy was not an easy one, btw - she had more post-op pain than is usual. She even considered that damage might have been done to a vagus nerve, but tests ruled that out.
She did a food elimination diet and found that she is highly allergic to wheat and corn; this has helped somewhat. She has also considered that she might be celiac, but she's not convinced, and it's very hard to diagnose.
Last, a few years ago, after one of her attacks, she went on a "cleanse routine", using a standard "cleanse" packet she got from a health food store. She noticed little white flecks in her stool when she used the cleanse, but neglected to have them analyzed. Also, just prior to her worst - near life-threatening attacks (3 hospitalizations) she has felt what she describes as a noticeable "fluttering" around her liver area; research says this is a not uncommon phenomena for people with parasite infections. Last, the docs did find that she has two pancreatic ducts - it's a congenital abnormality, but they say it's nothing serious, and ruled it out as a cause of her malaise.
I'm putting in a little detail to provide background, as it might elicit additional paths or ideas for diagnosis. She has traveled internationally, a lot, and some of her symptoms resonate with a general pattern for parasite infection, thus this request.
I'm sorry for your friend's trouble and hope she finds the cause soon. 1) If her liver values are terrible she should get a consult with a hepatologist at a teaching hospital. 2) The mention of the "cleanse" is indicative of some quackery. First, finding flecks of things in stool is common; stool is undigested waste. She can't conclude anything from seeing white flecks.
posted by ImproviseOrDie at 4:00 AM on May 4, 2013 [2 favorites]
posted by ImproviseOrDie at 4:00 AM on May 4, 2013 [2 favorites]
As a physician, I would just tell you that every physician is going to have good and bad reviews from various people. There is no physician who has made every patient they have seen happy, or, if there is, you don't necessarily want to see that person because the doctor's office is not where you come to "have it your way right away" - physicians should act based on what they think is the right course, not just doing what the patient wants them to. What you want to do is judge the reviews or references by how reasonable the person writing it seems to have been.
Think of it like when you look online for restaurant reviews. Even the best restaurants have some bad reviews, but when you read them you can decide whether the person writing the review was being unreasonable or not. If they were behaving inappropriately ("I made a reservation for 4 people, but ended up bringing 6, and the restaurant couldn't accommodate me!") or had inappropriate expectations ("I ordered my Indian food hot, and it was too spicy!"), and they got into trouble with the staff, then perhaps it's not the restaurant's fault. Whereas if they found a large insect in their meal, that's probably a fair problem to be upset about.
Along the same lines, if your friend will not be satisfied with the answer that her problem was not caused by parasites, then she may be setting herself up for disappointment. What she wants is a doctor who can explain to her why it's NOT parasites (if indeed, it is not - I have no idea and am not an ID specialist), in such a way that she will be happy with the explanation, and who will give her a plan of action for a further workup rather than saying "this doesn't look like it was caused by an infectious disease, so that means you'll just have to live with this." That should never be the conclusion of any workup of debilitating symptoms, particularly with objective findings such as elevated liver function testing.
I definitely understand your friend's interest in turning to alternative therapies or diagnostics, given that western medicine has given her frustratingly few answers thus far - but I would warn her that some alternative therapies can be harmful. I would agree with ImproviseOrDie that she should be cautious to make any interpretation based on the cleanse. From what I have heard, those cleansing solutions are designed to make your stool look weird after using them so that people using them will interpret the cleanse as having 'worked'. There is little evidence and much concern over the use of 'cleanses' for medical purposes. Also, the diagnosis of chronic Lyme disease is quite controversial in medicine, and there is particular concern about the overdiagnosis of this entity and resulting treatment with long courses of antibiotics.
posted by treehorn+bunny at 1:01 PM on May 4, 2013
Think of it like when you look online for restaurant reviews. Even the best restaurants have some bad reviews, but when you read them you can decide whether the person writing the review was being unreasonable or not. If they were behaving inappropriately ("I made a reservation for 4 people, but ended up bringing 6, and the restaurant couldn't accommodate me!") or had inappropriate expectations ("I ordered my Indian food hot, and it was too spicy!"), and they got into trouble with the staff, then perhaps it's not the restaurant's fault. Whereas if they found a large insect in their meal, that's probably a fair problem to be upset about.
Along the same lines, if your friend will not be satisfied with the answer that her problem was not caused by parasites, then she may be setting herself up for disappointment. What she wants is a doctor who can explain to her why it's NOT parasites (if indeed, it is not - I have no idea and am not an ID specialist), in such a way that she will be happy with the explanation, and who will give her a plan of action for a further workup rather than saying "this doesn't look like it was caused by an infectious disease, so that means you'll just have to live with this." That should never be the conclusion of any workup of debilitating symptoms, particularly with objective findings such as elevated liver function testing.
I definitely understand your friend's interest in turning to alternative therapies or diagnostics, given that western medicine has given her frustratingly few answers thus far - but I would warn her that some alternative therapies can be harmful. I would agree with ImproviseOrDie that she should be cautious to make any interpretation based on the cleanse. From what I have heard, those cleansing solutions are designed to make your stool look weird after using them so that people using them will interpret the cleanse as having 'worked'. There is little evidence and much concern over the use of 'cleanses' for medical purposes. Also, the diagnosis of chronic Lyme disease is quite controversial in medicine, and there is particular concern about the overdiagnosis of this entity and resulting treatment with long courses of antibiotics.
posted by treehorn+bunny at 1:01 PM on May 4, 2013
Nth-ing that all doctors will have bad reviews. People only write reviews if they've had experiences that were really good or really bad. And with bad reviews, context matters. I was looking up reviews on a nail salon recently. It had mostly 4 and 5 star reviews. The 1 star review was from someone who got mad that the salon was crowded and left.
posted by kat518 at 3:14 PM on May 4, 2013
posted by kat518 at 3:14 PM on May 4, 2013
Ugh, this sounds awful. Wish her the best. Try John Cahill. Some very important people who travel a lot trust him.
posted by vecchio at 5:27 PM on May 4, 2013
posted by vecchio at 5:27 PM on May 4, 2013
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As the CDC states, Lyme is diagnosed based on signs and symptoms [which are legion], and history of potential exposure. Laboratory tests can be useful in making a diagnosis.
This is not to say your friend has Lyme. But it should not be ruled out based on blood tests if her symptoms point that way. She could check out the Columbia Lyme and Tick Borne Diseases Research Center.
posted by heigh-hothederryo at 7:11 PM on May 3, 2013 [1 favorite]