Lyme's and alternative medicine...

[randomdoc1]

Ok, I've had two patients come to me these past few months with hx of Lyme's disease. They are both seeing these alternative medicine physicians. Both trained primarily as PCPs, not neurologists. One of them has hypothyroidism. This patient is complaining of a lot of cognitive symptoms and of course she's on "supplements" for her hypothyroidism and the MD gave her some Adderall and now she wants to be on that. I feel like the first step is getting these patients seen by a qualified provider in terms of treating for their medical comorbidities. But seriously, treating hypothyroidism with supplements?! I ordered TFTs on her to start, btw she was wearing two sweaters in my office despite that it was 75F out. But I was wondering if this is an ethical matter too because I feel like these patients are getting inappropriate follow-up by under trained providers for their persistent symptoms, who have an alternative medicine twist. That and I don't have confirmation that they underwent the full treatment course for their Lyme's disease. The other question is, if the patient refuses to see a qualified provider, I'm debating what to do in the event of that. Severe undermanaged hypothyroidism will be a great confounder in the clinical course of the patient and I was considering recommending the patient see someone else as I would not be comfortable just continuing to throw psychotropics in a patient who may be having neuropsychiatric symptoms due to another cause.

On another note, it is weird that these patients want a completely alternative medicine approach but also want me to prescribe benzos and/or Adderall over a serotonergic agent.

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[WisNeuro]

I mean, you could file a complaint, but I doubt it will go anywhere. Also, the patients are most likely pleased that they have a "doctor" who validates their subjective Lyme complaints and will not throw them under the bus if interviewed. These people tend to be somaticizers. Resistant to a psychological explanation for their presumed difficulties, and very resistant to therapy. I'd just get their levels and if they are off, try and re-engage them with appropriate medications. You can also take the tact of explaining to them that while adequately treating their hypothyroidism will not make all of their "cognitive" difficulties go away, it could help with some of them.

 

[PikminOC]

Ok, I've had two patients come to me these past few months with hx of Lyme's disease. They are both seeing these alternative medicine physicians. Both trained primarily as PCPs, not neurologists. One of them has hypothyroidism. This patient is complaining of a lot of cognitive symptoms and of course she's on "supplements" for her hypothyroidism and the MD gave her some Adderall and now she wants to be on that. I feel like the first step is getting these patients seen by a qualified provider in terms of treating for their medical comorbidities. But seriously, treating hypothyroidism with supplements?! I ordered TFTs on her to start, btw she was wearing two sweaters in my office despite that it was 75F out. But I was wondering if this is an ethical matter too because I feel like these patients are getting inappropriate follow-up by under trained providers for their persistent symptoms, who have an alternative medicine twist. That and I don't have confirmation that they underwent the full treatment course for their Lyme's disease. The other question is, if the patient refuses to see a qualified provider, I'm debating what to do in the event of that. Severe undermanaged hypothyroidism will be a great confounder in the clinical course of the patient and I was considering recommending the patient see someone else as I would not be comfortable just continuing to throw psychotropics in a patient who may be having neuropsychiatric symptoms due to another cause.

On another note, it is weird that these patients want a completely alternative medicine approach but also want me to prescribe benzos and/or Adderall over a serotonergic agent.

I have seen this more and more as well.

 

[MacDonaldTriad]

Alternative medicine: Alternative medicine is the term for medical products and practices that are not part of standard care. ... Examples of alternative practices include homeopathy, traditional medicine, chiropractic, and acupuncture.

Why embrace the evidence based stuff, embracing the coo coo is so much more fun and attractive to people with somatoform disorders.

 

[FlowRate]

Alternative medicine is fake news / marketing.

Not medicine would be the approximate doublespeak.

Expensive bull**** is what it should be called.

Also, pseudoscience is a terrible word because people who don't know what "pseudo" means just think it's fancy science.

 

[randomdoc1]

To add another odd twist to these stories, I think some of these patients gravitate towards me because I am asian and they are hoping for an "eastern"/"chinese medicine" approach.

 

[WisNeuro]

To add another odd twist to these stories, I think some of these patients gravitate towards me because I am asian and they are hoping for an "eastern"/"chinese medicine" approach.

Well, I imagine ground rhino horn works wonders for things like Chronic Lyme disease and fibromyalgia.

 

[WingedOx]

I have a pretty hard and fast "no stimulants with untreated hypothyroid" rule though it's usually due to lazy college kids and not something like this.

 

[Liquid8]

Here Lyme's disease is considered controversial, as most patients who end up with the diagnosis haven't actually been anywhere where they could have picked up the infection. Thought the issue was that patients ended up on long-term antibiotics which isn't really within the scope of most psychiatrist and haven't come across any patients with it who are after stimulants, and if they had hypothyroidism it'd be a no-brainer to have that managed first, and only then assess for ADHD if the reported cognition problems are still ongoing.

These days I tend to reject any referrals that mention condition like Lyme, as you know that there is going to be a lot of resistance towards conventional medical practice which makes your job harder than it should be. Can remember being referred someone with "Pyrrole disease." I'd never heard of this condition, searches came up only with alternative health sites and there were no hits on Medline Plus. Later on found out that the person who hypothesised the condition did get published in the 70s, but the results were not replicated so they started their own journal.

 

[watto]

I am very close to not accepting any patients who are seeing naturopaths. Just too much conflict in treatment approach. Drives me a little bit nuts.

 

[calvnandhobbs68]

The problem is there's a quite a few (usually PCPs) MDs/DOs who are advertising themselves as "holistic providers" so they can drum up cash only supplement business. Then then do bull**** like the above and now their patients go around saying their real deal doctor prescribed this stuff so of course it must be okay!!

It's pretty much throwing your credentials behind selling stuff like the Rodan and Fields/Proactive crap except at least that stuff is just overpriced acne medicine that works sometimes.

 

[WingedOx]

Here Lyme's disease is considered controversial, as most patients who end up with the diagnosis haven't actually been anywhere where they could have picked up the infection. Thought the issue was that patients ended up on long-term antibiotics which isn't really within the scope of most psychiatrist and haven't come across any patients with it who are after stimulants, and if they had hypothyroidism it'd be a no-brainer to have that managed first, and only then assess for ADHD if the reported cognition problems are still ongoing.

These days I tend to reject any referrals that mention condition like Lyme, as you know that there is going to be a lot of resistance towards conventional medical practice which makes your job harder than it should be. Can remember being referred someone with "Pyrrole disease." I'd never heard of this condition, searches came up only with alternative health sites and there were no hits on Medline Plus. Later on found out that the person who hypothesised the condition did get published in the 70s, but the results were not replicated so they started their own journal.

We're in a weird spot here. Kind of on the edge of the Midwestern Lyme belt, but at the same time we don't see many ticks.

A few hours south of here on the other hand, a tick check is mandatory if you want to do just about anything outdoors. Went hiking with the nieces and nephews in central Missouri this summer and have never seen so many ticks crawling on peoples' skins.

 

[birchswing]

I thought the new Lyme tests were fairly black and white. Is there still uncertainty? I remember it used to be hard to know if someone got it, but I thought there were newer tests that were accurate.

 

[dassie]

I thought the new Lyme tests were fairly black and white. Is there still uncertainty? I remember it used to be hard to know if someone got it, but I thought there were newer tests that were accurate.

Im in the southeast and when I see a “Lyme” patient it’s more that if they’ve had Lyme disease *ever* in their life later will attribute everything to their “chronic Lyme”.

 

[Trismegistus4]

Im in the southeast and when I see a “Lyme” patient it’s more that if they’ve had Lyme disease *ever* in their life later will attribute everything to their “chronic Lyme”.

I'm no expert on this, but there's this quack diagnosis called "Chronic Lyme Disease," and that may be what the OP's patients are talking about. As I understand it, it's a phenomenon in which people with a lot of vague somatic complaints and general malaise--i.e., fibromyalgia and chronic fatigue syndrome type people--attribute their symptoms to Lyme disease even when there is absolutely no serologic evidence that the person has ever been infected with Borrelia burgdorferi. They keep getting repeated serologic tests until they get a positive (i.e., a false positive) and then they go doctor-shopping trying to find someone to prescribe them chronic, long-term doxycycline. So, the OP is taking at face value her patient's reports of having a history of Lyme disease, but this may in fact be totally bogus.

 

[clausewitz2]

I'm no expert on this, but there's this quack diagnosis called "Chronic Lyme Disease," and that may be what the OP's patients are talking about. As I understand it, it's a phenomenon in which people with a lot of vague somatic complaints and general malaise--i.e., fibromyalgia and chronic fatigue syndrome type people--attribute their symptoms to Lyme disease even when there is absolutely no serologic evidence that the person has ever been infected with Borrelia burgdorferi. They keep getting repeated serologic tests until they get a positive (i.e., a false positive) and then they go doctor-shopping trying to find someone to prescribe them chronic, long-term doxycycline. So, the OP is taking at face value her patient's reports of having a history of Lyme disease, but this may in fact be totally bogus.

What's usually more insidious about chronic Lyme is that the patient in question generally does have a legit positive serology and may well have been exposed at one point, but underwent normal, standard-of-cate abx treatment. Despite all this, they identify a number of somatic complaints that they attribute to inadequately treated Lyme and feel they require continued and frequent antibiotics, regardless of the best medical evidence or consensus opinion of IDSA.

Sure, this is probably a gross distortion wrt how much of their experience is genuinely the result of B. burgdoferi per se, but they would not be so persistent if they simply were deluded about testing positive at some point. Remember, the test in no way is definitive for an active infecrion.

 

[birchswing]

I always thought the big issue was someone having had an infection at some point and being unaware of it at the time (the acute infection) and not getting treatment, and it then causing long-term neurological damage that people then tried to treat after the fact with long-term antibiotics (which is the controversial part). That's just what I remember from having read about it a while ago. I had a lot of tick bites as a child in the southeast and was never tested, so it always was something that made me wonder and thinking in the back of my mind I should get tested some time but then thinking it's probably not worth it because even if I did, the long-term treatments are controversial. There was one in particular my dad always brings up where somehow I had a tick at the base of my neck under my hair that I somehow didn't feel for a long time because when I finally did it was completely engorged.

 

[Trismegistus4]

What's usually more insidious about chronic Lyme is that the patient in question generally does have a legit positive serology and may well have been exposed at one point, but underwent normal, standard-of-cate abx treatment. Despite all this, they identify a number of somatic complaints that they attribute to inadequately treated Lyme and feel they require continued and frequent antibiotics, regardless of the best medical evidence or consensus opinion of IDSA.

Again, I'm not totally sure since it's been hard to find clear information on the details, but I believe what you're talking about is known as "post-treatment Lyme disease syndrome" and is regarded as a real thing by mainstream medicine. Whereas "chronic Lyme disease" is what birchswing is describing, in which someone has myalgias and general malaise, which they then attribute to the long-term sequelae of untreated Lyme disease, despite the fact that there has never been any evidence, other than those symptoms themselves, of Lyme disease, and there's no evidence that antibiotics help in those cases.

 

[clausewitz2]

Again, I'm not totally sure since it's been hard to find clear information on the details, but I believe what you're talking about is known as "post-treatment Lyme disease syndrome" and is regarded as a real thing by mainstream medicine. Whereas "chronic Lyme disease" is what birchswing is describing, in which someone has myalgias and general malaise, which they then attribute to the long-term sequelae of untreated Lyme disease, despite the fact that there has never been any evidence, other than those symptoms themselves, of Lyme disease, and there's no evidence that antibiotics help in those cases.

I think you will find the distinction between these things is not nearly so sharp in reality, and certainly many of the chronic Lyme identifying people might have qualified at some point for post-Lyme treatment syndrome. For what it is worth IDSA asserts that subjective complaints of post-Lyme treatment syndrome are not due to persistent B. burgdoferi infection and that abx are not indicated.

 

[VA Hopeful Dr]

Again, I'm not totally sure since it's been hard to find clear information on the details, but I believe what you're talking about is known as "post-treatment Lyme disease syndrome" and is regarded as a real thing by mainstream medicine. Whereas "chronic Lyme disease" is what birchswing is describing, in which someone has myalgias and general malaise, which they then attribute to the long-term sequelae of untreated Lyme disease, despite the fact that there has never been any evidence, other than those symptoms themselves, of Lyme disease, and there's no evidence that antibiotics help in those cases.

So you're kinda right.

Untreated Lyme disease is progressive - early localized ---> early disseminated ---> late disseminated.

Post-treatment Lyme is a thing, but the list of exclusions is massive:

• An active, untreated, well-documented coinfection, such as babesiosis.
• The presence of objective abnormalities on physical examination or on neuropsychologic testing that may explain the patient's complaints. For example, a patient with antibiotic refractory Lyme arthritis would be excluded. A patient with late neuroborreliosis associated with encephalopathy, who has recurrent or refractory objective cognitive dysfunction, would be excluded.
• A diagnosis of fibromyalgia or chronic fatigue syndrome before the onset of Lyme disease.
• A prolonged history of undiagnosed or unexplained somatic complaints, such as musculoskeletal pains or fatigue, before the onset of Lyme disease.
• A diagnosis of an underlying disease or condition that might explain the patient's symptoms (eg, morbid obesity, with a body mass index [calculated as weight in kilograms divided by the square of height in meters] ≥45; sleep apnea and narcolepsy; side effects of medications; autoimmune diseases; uncontrolled cardiopulmonary or endocrine disorders; malignant conditions within 2 years, except for uncomplicated skin cancer; known current liver disease; any past or current diagnosis of a major depressive disorder with psychotic or melancholic features; bipolar affective disorders; schizophrenia of any subtype; delusional disorders of any subtype; dementias of any subtype; anorexia nervosa or bulimia nervosa; and active drug abuse or alcoholism at present or within 2 years).
• Laboratory or imaging abnormalities that might suggest an undiagnosed process distinct from post-Lyme disease syndrome, such as a highly elevated erythrocyte sedimentation rate (>50 mm/hour); abnormal thyroid function; a hematologic abnormality; abnormal levels of serum albumin, total protein, globulin, calcium, phosphorus, glucose, urea nitrogen, electrolytes, or creatinine; significant abnormalities on urine analysis; elevated liver enzyme levels; or a test result suggestive of the presence of a collagen vascular disease.
• Although testing by either culture or PCR for evidence of Borrelia burgdorferi infection is not required, should such testing be done by reliable methods, a positive result would be an exclusion.


Chronic Lyme is a BS thing from crazy people who are convinced that their plethora of vague, nonreproducible symptoms are the result of the usual course of antibiotics not eradicating the infection despite all the evidence to the contrary.

 

[WisNeuro]

So you're kinda right.

Untreated Lyme disease is progressive - early localized ---> early disseminated ---> late disseminated.

Post-treatment Lyme is a thing, but the list of exclusions is massive:

• An active, untreated, well-documented coinfection, such as babesiosis.
• The presence of objective abnormalities on physical examination or on neuropsychologic testing that may explain the patient's complaints. For example, a patient with antibiotic refractory Lyme arthritis would be excluded. A patient with late neuroborreliosis associated with encephalopathy, who has recurrent or refractory objective cognitive dysfunction, would be excluded.

Just make sure it's an eval that adequately assessed validity. Still plenty of people not trained in neuropsychology doing "Neuropsychological Evaluations" for these types of disorders and taking data at face value despite many signs that the evaluation was invalid.

 

[whopper]

Lyme Disease is one of those things like hypothyroidism where the psychiatrist should be on top of it especially cause in some areas the disease is actually quite common and it has psychiatric implications.

Agree with all of the above. A problem with the disease is even if it's obliterated with antibiotics it can cause Jarisch Herxheimer reaction. That is the microscopic bits and pieces of the dead Lyme disease parasites (remember they're not bacteria, but they're insects so small they're way bigger than bacteria but still not visible to the naked eye) flow in the body then the immune system attacks those particles causing several problems that could last long after the actual Lyme Disease is killed including various inflammation problems and sx related to the areas where that inflammation happens. This could include the brain if the Lyme disease progressed to that area.

This is one of those things where I've seen doctors not know about it then not entertain anything in that could lead them to this diagnosis because of the lack of knowledge and lack of willingness to lit-search when odd things happen.

Further if the Lyme Disease progresses to the CNS even after it's treated the person could have chronic neurological/psychiatric sx. The problem here is many doctors aren't familiar with this and tend to blow off things they weren't trained/aware of (e.g. Charles Bonnet Syndrome-some psychiatrists foolishly try to medicate the patient with an antipsychotic when it's not really psychosis).

But as mentioned above there's also a segment of people who pursue medical problems in a hypochondriac manner and sometimes think they got Lyme disease or it's sequelae when they do not.

Pyrrole Disease: There's never been any convincing data this disorder even exists. Another problem is tests for elevated Pyrroles if not done extremely carefully can yield false positives. I terminated a patient that was convinced she had this disorder and I promised (and fulfilled that promise) that I would do the due diligence to see what that disorder was and check the existing data out there. Again there's no data that convinced any coherent medical organization it really does exist. I've entertained some very out-there presentations that did turn out to be real problems when I did the extra work to confirm, but this one I couldn't find anything convincing me it was Pyrrole Disorder and spent about 15 hours doing various lit-searches on it. Further the patient didn't do half of what I recommended cause of a belief that her depression was Pyrrole Disorder. E.g. I told her if this really was Pyrrole Disorder then why aren't the recommendations from the (quack) practitioner to treat it not working? If they're not working then why not try what I recommend?

In her defense she was treatment resistant including ECT, Ketamine, and literally over 15 antidepressants which only made her think it was Pyrrole Disorder even more-so, but I told her if you want to treat it like it's Pyrrole then I'm not the person to treat it, and told her there's no good data supporting the disorder exists, and emphasized her treatments for Pyrrole Disorder weren't helping her anyways.

Not helping her credibility she also told me she was a firm believer in Daniel Amen and told me she went to his clinic and they gave her recommendations, so that's another reason why she wasn't following my recommendations. I told her Amen too engaged in highly questionable practice, but also told her again the same thing. If you want to be treated by me then be treated by me. See me, take my recommendation and then not follow it cause a psychiatrist at the Amen clinic told you not to do so. Then go see them as your primary provider.

Adding to the frustration she alleged the Amen clinic told her they couldn't be her treatment provider for whatever odd reason (but they were going to charge her an arm and a leg for a very nice looking brain-scan with no good science backing it up).

 

[Trismegistus4]

So you're kinda right.

Untreated Lyme disease is progressive - early localized ---> early disseminated ---> late disseminated.

Post-treatment Lyme is a thing, but the list of exclusions is massive:

• An active, untreated, well-documented coinfection, such as babesiosis.
• The presence of objective abnormalities on physical examination or on neuropsychologic testing that may explain the patient's complaints. For example, a patient with antibiotic refractory Lyme arthritis would be excluded. A patient with late neuroborreliosis associated with encephalopathy, who has recurrent or refractory objective cognitive dysfunction, would be excluded.
• A diagnosis of fibromyalgia or chronic fatigue syndrome before the onset of Lyme disease.
• A prolonged history of undiagnosed or unexplained somatic complaints, such as musculoskeletal pains or fatigue, before the onset of Lyme disease.
• A diagnosis of an underlying disease or condition that might explain the patient's symptoms (eg, morbid obesity, with a body mass index [calculated as weight in kilograms divided by the square of height in meters] ≥45; sleep apnea and narcolepsy; side effects of medications; autoimmune diseases; uncontrolled cardiopulmonary or endocrine disorders; malignant conditions within 2 years, except for uncomplicated skin cancer; known current liver disease; any past or current diagnosis of a major depressive disorder with psychotic or melancholic features; bipolar affective disorders; schizophrenia of any subtype; delusional disorders of any subtype; dementias of any subtype; anorexia nervosa or bulimia nervosa; and active drug abuse or alcoholism at present or within 2 years).
• Laboratory or imaging abnormalities that might suggest an undiagnosed process distinct from post-Lyme disease syndrome, such as a highly elevated erythrocyte sedimentation rate (>50 mm/hour); abnormal thyroid function; a hematologic abnormality; abnormal levels of serum albumin, total protein, globulin, calcium, phosphorus, glucose, urea nitrogen, electrolytes, or creatinine; significant abnormalities on urine analysis; elevated liver enzyme levels; or a test result suggestive of the presence of a collagen vascular disease.
• Although testing by either culture or PCR for evidence of Borrelia burgdorferi infection is not required, should such testing be done by reliable methods, a positive result would be an exclusion.


Chronic Lyme is a BS thing from crazy people who are convinced that their plethora of vague, nonreproducible symptoms are the result of the usual course of antibiotics not eradicating the infection despite all the evidence to the contrary.

Haha, I was trying to avoid putting it so bluntly, but your last paragraph is basically what I was trying to say. Except that I thought there are even people who were never at any point diagnosed with Lyme disease or given the usual course of antibiotics, but rather develop all these symptoms and then retroactively attribute them to a past case of Lyme disease.

And thanks for the info. What an interesting list. I would love to be able to tell someone "sorry, you can't have post treatment Lyme disease syndrome. You're too fat!"

Agree with all of the above. A problem with the disease is even if it's obliterated with antibiotics it can cause Jarisch Herxheimer reaction. That is the microscopic bits and pieces of the dead Lyme disease parasites (remember they're not bacteria, but they're insects so small they're way bigger than bacteria but still not visible to the naked eye) flow in the body then the immune system attacks those particles causing several problems that could last long after the actual Lyme Disease is killed including various inflammation problems and sx related to the areas where that inflammation happens. This could include the brain if the Lyme disease progressed to that area.

Uh, is this a whoosh? Borrelia are bacteria, not insects. Unless by Lyme disease parasite you mean the deer tick, which is an arachnid, not an insect, and is definitely visible to the naked eye. And Jarisch Herxheimer reaction is certainly out of the realm of my expertise, but from what I've read I'm pretty sure it's an acute response, not a smoldering condition that could cause all of these chronic long-term complaints the patients we're talking about have.

 

[whopper]

OOps you're right. Thanks for the correction. But same thing applies.

I've seen a few patients where the JH reaction does go on for months. It was something that because it was outside of my usual practice I just left it up to the other doctors.

 

[VA Hopeful Dr]

Just make sure it's an eval that adequately assessed validity. Still plenty of people not trained in neuropsychology doing "Neuropsychological Evaluations" for these types of disorders and taking data at face value despite many signs that the evaluation was invalid.

I hope this never comes up as my state averages 8 causes of Lyme/year.

 

[WisNeuro]

I hope this never comes up as my state averages 8 causes of Lyme/year.

Ah, I am in a state that averages well over a thousand confirmed a year so it's a little more salient to me. But yeah, shouldn't be a problem in say, Arkansas. Unless someone moves there from the NE or upper Midwest.

 

[SeniorWrangler]

The Lyme Wars

I see chronic lyme as a variant of SEID/CFS/ME, a real chronic problem that is poorly understood and probably has little to do with Lyme disease.

 

[WingedOx]

The Lyme Wars

I see chronic lyme as a variant of SEID/CFS/ME, a real chronic problem that is poorly understood and probably has little to do with Lyme disease.

I've got a ME case in my personal/family life and it's been a tough thing to watch. This person has had chronic issues for a number of years, got workups all over the country, including Mayo and a couple other high profile spots. Finally got the ME dx and the only thing that changed was a psychological relief of having a "diagnosis" and a lot of memes about ME awareness posted to facebook. This person of course has NEVER exercised before even when healthy and has an atrocious diet of deep friend everything while putting on ~100+ lbs in the last few years.

 

[VA Hopeful Dr]

The Lyme Wars

I see chronic lyme as a variant of SEID/CFS/ME, a real chronic problem that is poorly understood and probably has little to do with Lyme disease.

We're in agreement, especially with the bold part.