PTLDS Issues

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
velvetmagnetta
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Re: PTLDS Issues

Post by velvetmagnetta » Sat 26 Jul 2014 11:22

Phyfe, you're awesome! Thank you for this.

Duncan,

I think I may have pinpointed the source of your confusion!

They've systematically listed everything people suspect they got as a result of their Lyme disease infection (past or present) as an exclusion factor in Post-Lyme Disease Syndrome.

This accomplishes two things:

First,

it pushes anybody with what they consider "real problems" out of the PLDS realm so that only people who think they're having real problems (but in Wormser's real unrealistic reality, they're not, really) are left. This is evidenced in this particular line of inclusion:
Complaints of cognitive difficulties
People who complain about having cognitive difficulties are included in PLDS, whereas people who actually have cognitive difficulties are excluded as evidenced here:
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.
Even though this is an extremely important point, it has been seemingly hidden away behind another totally different extremely important point, refractory Lyme arthritis.

And second,

it slaps everyone without an objective measure for his or her pain and disability (not that there isn't an objective measure, just that no one will be given a test to measure it - such as the Two-Day PEM test) with a new and improved PLDS label. This new label no longer even means "Post-Lyme Disease Syndrome"! It now means "Crazy People Who Think They Have PLDS" or CPWTTHPLDS.

Otherwise, I don't see how having a diagnosis of Schizophrenia in a person's lifetime, for example, can exclude that person from having problems after Lyme treatment a.k.a. Post-Lyme Disease Syndrome???

But what I think they have unwittingly accomplished is that anybody with objective problems stemming from their Lyme disease infection who has already been treated with either short- or long-term antibiotics will now be considered to still have the Lyme disease infection, thus perpetuating the "Chronic Lyme Disease" label they have tried so hard to crush out of existence.

I'll bet this clears things right up for you, doesn't it?

You see, they have really out-done themselves this time. They've out-done themselves so well that they have actually out-witted themselves!

duncan
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Re: PTLDS Issues

Post by duncan » Sat 26 Jul 2014 12:50

Yes, many thanks, Phyfe. :)

Vetvetmagnetta, yes, it would seem they keep painting themselves into a corner. But a couple things to remember:

First, I don't believe they are bothered by what we may see as open contradictions.

Second, there appears to be a tacit hierarchy of Lyme decrees. In this particular neighborhood, treatment is king of the hill. Treatment rules and trumps all else. You can have ELISA results off the charts, and ten bands IgG positive, but if you've received any form of recommended treatment, I suspect nine out of ten IDSA chaps will pronounce you Lyme free. An exemption from this decree would be refractory Lyme arthritis, but that's mainly due to the man who pretty much created the game - Steere.

Third, these are only proposed guidelines. Savvy? (My apologies to Pirates of the Caribbean). There really is not much that is concrete. The IDSA Guidelines do have a few pages that "officially" address PLDS, which they sum up by observing, "There is no well-accepted definition of post-Lyme disease syndrome." And to be fair, I should acknowledge the CDC's Lyme website. It has at least a little meat to its PTLDS write-up, but whereas it seems to start, er, strongish, it tends to steer mushy and more-or-less rudderless as it quickly descends into condescension and comical platitudes.

The final point I want to make about the proposed IDSA Guidelines for PLDS - now more PC on the CDC's website with PTLDS - is that I pointed out Table 5 (again, hats off to Phyfe), in an attempt to get a feel for what the objectives of that Lyme Bunco Group might have been. That maybe we could catch an inkling of what their intent was, so we can better understand what is going on today. For instance, the recent study suggesting treating PTLDS with an ME/CFS protocol. Or perhaps get handle on what is happening behind the scenes with the Chronic Lyme/PTLDS study inherited by Marques (e.g. is the NIH actually looking for anything meaningful?)

The contradictions imo still exist. Unfortunately, so does that batsh*t crazy hierarchy that allows the old IDSA treatment protocol to trump all. The question is, Is there any plan to actually do something with patients that manage to get slapped with the PTLDS label, or even better, something FOR those patients? As opposed to a plan that involves doing something to them. (Somatoform disorder anyone?)

velvetmagnetta
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Re: PTLDS Issues

Post by velvetmagnetta » Mon 28 Jul 2014 20:07

I am astounded by the sheer arrogance it must take for a non-psychiatric MD, NP, or PA to diagnose a patient with "Somatoform Disorder".

I did not know what that was, and so I had to look it up. From psyweb.com:

http://www.psyweb.com/mdisord/jsp/somatd.jsp

It starts out ok:
Symptoms with no apparent cause

Individuals who have a somatoform disorder experience various symptoms, such as physical pain, for which there is no clear medical reason. Unfortunately, since a symptom such as pain can be caused by many different things, those evaluating the patient are often hesitant to make the determination that the pain is psychological in nature. And of course, no patient wants to be told that “the pain is all in your head”, especially when to him or her, it is very real and causing significant distress.
But then:
Sadly, individuals with a somatoform disorder become increasingly frustrated. From their perspective, no one is listening and able to make an accurate diagnosis. Not to mention, they’re unable to get relief for their symptoms. Questioning their doctor’s competence, they often start going from one doctor to the next demanding lab work and other tests that they don’t need. Many start to believe that they have all sorts of medical conditions that they don’t actually have.
Hmmm...So sad, indeed. But then:
People who suffer from these disorders typically become preoccupied with their health. They can be very difficult patients for the doctors and other providers who see them. When they don’t get the answers or help that they seek, they can become quite agitated.
...they can become quite agitated ------ LOL

To their credit:
Diagnosis of Somatoform Disorders

To accurately diagnose a somatoform disorder, a thorough physical examination must take place to rule out an underlying medical cause of the patient’s symptoms.
But then:

(and there are more of these, but these two are my favorites)
Conversion Disorder

Individuals with this disorder have symptoms or difficulties with their senses (e.g. blindness, deafness) or their motor functioning (e.g. difficulties swallowing, weakness in a specific area). Their symptoms are “pseudoneurological”, which means they suggest a neurological cause but no such cause can be found. Prior to the onset or worsening of their symptoms they experienced conflict or other types of stress that is believed to be associated with the development of the disorder.


Pain Disorder
As the name suggests, pain is the primary complaint with this disorder. There is no physical explanation for the pain. Underlying psychological issues are believed to play a role in triggering, maintaining, or exacerbating the pain or making it more intense.
Hahaha! pseudoneurological - suggests a neurological cause for their symptoms (spasms, tics, memory and concentration problems, pain, and even difficulty swallowing) BUT NO SUCH CAUSE CAN BE FOUND.

So, their conclusion is not to try and find the cause, but instead, to label the patient F_CKN NUTS???

I just could not get over this "disorder". It seems to describe Lyme, FM, ME, and any other mystery illness of which the etiology is uncertain or completely unknown.

So, let's just stop even looking? What, do they think we already know all there is to know about the world of biology, bacteria, and viruses?

This is a true God Complex, if I ever heard one...And a quite incompetent God at that.

Camp Other
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Re: PTLDS Issues

Post by Camp Other » Mon 28 Jul 2014 20:20

velvetmagnetta wrote:I am astounded by the sheer arrogance it must take for a non-psychiatric MD, NP, or PA to diagnose a patient with "Somatoform Disorder".
Hi velvetmagnetta. Welcome to the club!

velvetmagnetta wrote:To their credit:
Diagnosis of Somatoform Disorders

To accurately diagnose a somatoform disorder, a thorough physical examination must take place to rule out an underlying medical cause of the patient’s symptoms.
Which raises a flag for me, immediately:

How does one define a thorough physical examination?

And perhaps a physical examination is not enough to do a good rule out or rule in. Blood tests and imaging tests may be needed. Referrals to certain specialists may be in order.

A number of patients I've talked to with symptoms which overlap those of Lyme disease were told their symptoms were all in their heads by the first doctor who saw them - and that doctor did not even really try harder to find alternative reasons for their symptoms. They just threw their hands up in the air and said, "It's probably depression" or "It's all in your head, there's nothing wrong - the tests I took are negative" without further investigation.

It was premature to leap to that conclusion. Plus in a number of cases, the doctor in question wasn't fully qualified to make a psych diagnosis and should have referred the patient to someone else for that kind of evaluation.

I know of patients who have been referred to a therapist and psychologist, and were told that their symptoms didn't match a mental illness and were advised to seek a second opinion with a medical professional.
velvetmagnetta wrote: But then:

(and there are more of these, but these two are my favorites)
Conversion Disorder

Individuals with this disorder have symptoms or difficulties with their senses (e.g. blindness, deafness) or their motor functioning (e.g. difficulties swallowing, weakness in a specific area). Their symptoms are “pseudoneurological”, which means they suggest a neurological cause but no such cause can be found. Prior to the onset or worsening of their symptoms they experienced conflict or other types of stress that is believed to be associated with the development of the disorder.


Pain Disorder
As the name suggests, pain is the primary complaint with this disorder. There is no physical explanation for the pain. Underlying psychological issues are believed to play a role in triggering, maintaining, or exacerbating the pain or making it more intense.
Hahaha! pseudoneurological - suggests a neurological cause for their symptoms (spasms, tics, memory and concentration problems, pain, and even difficulty swallowing) BUT NO SUCH CAUSE CAN BE FOUND.

So, their conclusion is not to try and find the cause, but instead, to label the patient F_CKN NUTS???

I just could not get over this "disorder". It seems to describe Lyme, FM, ME, and any other mystery illness of which the etiology is uncertain or completely unknown.

So, let's just stop even looking? What, do they think we already know all there is to know about the world of biology, bacteria, and viruses?

This is a true God Complex, if I ever heard one...And a quite incompetent God at that.
Well, yeah, and this is just it: Any doctor can diagnose a patient with a somatoform disorder at any point in time, whether it's their first visit or their twelfth. And that diagnosis can be made on the basis that the doctor is a lousy diagnostician and not that the patient is all that cryptic.

And given a 10 minute managed care appointment (at least in the US), how likely is it that a patient who is difficult to diagnose with a given condition going to have a somatoform disorder - versus they are ill but the low hanging fruit of possibilities are not there to be found?

Sometimes, dear doctors, you do have a zebra on your hands and not one of those horses. Don't leap to a conclusion too soon.

velvetmagnetta
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Re: PTLDS Issues

Post by velvetmagnetta » Wed 30 Jul 2014 6:27

Camp Other:
Hi velvetmagnetta. Welcome to the club!
Thanks, Camp Other, but I'm not sure it's a club I wanted to join!

And I loved your "zebra" comment...yes, sometimes it is actually a zebra!

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ChronicLyme19
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Re: PTLDS Issues

Post by ChronicLyme19 » Tue 12 Aug 2014 2:10

But what I think they have unwittingly accomplished is that anybody with objective problems stemming from their Lyme disease infection who has already been treated with either short- or long-term antibiotics will now be considered to still have the Lyme disease infection, thus perpetuating the "Chronic Lyme Disease" label they have tried so hard to crush out of existence.

I'll bet this clears things right up for you, doesn't it?

You see, they have really out-done themselves this time. They've out-done themselves so well that they have actually out-witted themselves!
I agree whole heartedly, unfortunately I agree with Duncan and I don’t think these guys are going to see their own contradiction. Just like the docs who think they know it all and don’t see zebras, despite living in zebra endemic areas.

But that is a hard problem, how do you distinguish active chronic/late stage lyme who still benefit abx vs those who have gotten rid of Lyme but have permanent damage vs those who’s lyme level is so high that they never get the disease under control and seem to continually herx?
Half of what you are taught is incorrect, but which half? What if there's another half missing?

velvetmagnetta
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Re: PTLDS Issues

Post by velvetmagnetta » Wed 13 Aug 2014 4:03

I hope you don't mind, ChronicLyme19, but I'm going to list the possibilities you mentioned by number:
But that is a hard problem, how do you distinguish active chronic/late stage lyme who still benefit abx vs those who have gotten rid of Lyme but have permanent damage vs those who’s lyme level is so high that they never get the disease under control and seem to continually herx?
Here we have patients who have:

1. Chronic/late stage Lyme who still benefit from antibiotics
2. Cured Lyme but have permanent damage
3. High Lyme load with continual Herx

These 3 possibilities are so incredibly important to recognize and then distinguish from each other that I can't believe researchers have not yet even begun to do this. All this dragging our feet waiting for the IDSA stamp of approval has caused us to lose out on years of potentially beneficial studies and courses of action.

The IDSA and CDC have been so concerned with kicking people out of the Lyme diagnosis that they've never even thought to analyze all the different groups of responses to their own recommended course of treatment! Just by reading Lyme blogs and message boards like this one, we here are aware of these 3 distinct groups of patients.

It's like, what do these researchers get paid to do all day?

I find Lyme disease and all the different symptom manifestations exceedingly interesting. If I worked for an infectious diseases department, I would think it rather important to know whether patients are still having pain and disability from an ongoing infection or if it was from residual damage! And yet, I don't know of ONE research paper analyzing the quality or cause of the supposed residual damage.
Last edited by velvetmagnetta on Wed 13 Aug 2014 17:14, edited 1 time in total.

duncan
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Re: PTLDS Issues

Post by duncan » Wed 13 Aug 2014 13:09

Two of the problems I have with PTLDS are wrapped around the premise upon which the syndrome is based.

First, buried just beneath the name is the assumption that conventional treatment is adequate. I think that is a dangerous assumption for acute cases, with possibly anywhere from 5% - 20% of cases reporting persistent symptoms (if memory serves me) following treatment.

I fear, though, those numbers might look good compared to responses to conventional treatment being reported from confirmed Late Stage Lyme cases. It would not surprise me if a larger percentage of these individuals have symptoms refractory to conventional treatment. Difficult to say, though, as I can't find any current research being done by the NIH to look specifically at Late Stage Lyme. This is an odd omission in light of the recent about-face in estimates of annual Lyme cases in the U.S. by mainstream Lyme powers.

Second, is an even more tenuous assumption we are being asked to make, and that is what work is being directed at PTLDS (at least by the NIH) is being done so in earnest, and not out of necessity due to political considerations. This is an important consideration given I am reasonably certain our friends at the IDSA and CDC and NIH are aware of the machinations going on with the IOM at the expense of the ME/CFS crowd. Trying to glean details from the longest running NIH-sponsored Chronic Lyme/PTLDS study may help us discern intent, but retrieving those details is a blasted dicey process.

So, in theory, on one hand we have a legitimate disorder caused by Bb, and our medical Stewards are working hard to unravel its complicated coding. Well, at least, some of them might be. Who, though? My faith in the NIH has been sorely tested recently, so I'm reluctant to wager a wad of $'s on that group. Who then? Aucott? How many researchers are actually trying to solve the PTLDS riddle?

On the other, we may have an artificial construct that few are really trying to deconstruct so as to analyze and remedy.

Ultimately, the truth may rest somewhere in between - PTLDS may emerge as a legitimate disorder rooted in immune dysfunction, with or without the presence of persisters, but few in mainstream Lyme really believes it exists and that research community, more or less en mass, is just going through the motions until it can divest PTLDS by foisting into the waiting arms of the purveyors of MUS.
Last edited by duncan on Wed 13 Aug 2014 16:34, edited 2 times in total.

duncan
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Re: PTLDS Issues

Post by duncan » Wed 13 Aug 2014 15:01

BTW, technically, if what some researchers have dubbed PTLDS involves persisters, or antibiotic-resistant forms of Bb, or different strains of Bb, then imo it is not PTLDS. It is Lyme.

If it involves a different species, then again, it is not PTLDS. It is whatever the name of that species is.

Edited to add: If it is primarily a breakdown of the immune system, then I would hope to see entire swaths of research that are directed accordingly, beyond merely Steere's efforts specific to swollen knees that have proven refractory to treatment.

phyfe
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Re: PTLDS Issues

Post by phyfe » Sat 16 Aug 2014 20:41

And if it is a break down of the immune system then there are many other diseases that have that same issue. So research definitely needs to be done to help millions of people.

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