4 ms·

There's a musician named Ren (@renmakesmusic) who was told for years that he had various psychiatric diseases and eventually it was discovered that he had an au

There's a musician named Ren (@renmakesmusic) who was told for years that he had various psychiatric diseases and eventually it was discovered that he had an autoimmune disorder caused by Lyme disease. He writes songs about his experiences and how he thought his life was over. He mentioned in a podcast that he only got a proper diagnosis because he lied to a doctor about his symptoms to get specific meds, and those meds just happened to work. Because they worked, another doctor was able to put all the info together and diagnose Lyme.

haldujai 3y ago
Lyme disease can be “autoimmune” like in clinical manifestation but is more accurately described as a tick borne infectious disease treated primarily with antibiotics, as opposed to the viruses being discussed here which are more weakly linked and treated with immunosuppressants.
PragmaticPulp 3y ago
Be careful with anything related to “chronic Lyme”. While it is true that Lyme disease can trigger long-term symptoms, Lyme has also become a catch-all haven for pseudoscience practitioners and quackery. It has become so bad that most patients with unexplained chronic conditions who use internet health forums will eventually go through a phase where they think they might have Lyme disease. The “chronic Lyme” alternative medicine industry has evolved to cater to these desperate patients by offering convenient, albeit unprovable, answers to the question of what’s causing their symptoms. The chronic Lyme proponents claim that it can’t be tested for, won’t show up on normal tests, or can only be diagnosed through vague symptoms. As a result, anyone showing up with vague symptoms gets a diagnosis of chronic Lyme. Their proposed treatments usually involve extended rounds of expensive antibiotics which have no proof of working and have not shown any difference from placebo in clinical trials of supposed “chronic Lyme” patients. Sadly, some quick research on the musician you cited shows that he has been taken by one such alternative medicine practitioner and has been attempting to raise tens of thousands of dollars to pay this practitioner for antibiotic treatment. I’m sorry to say but I suspect this musician has been caught up in the chronic Lyme alternative medicine industry without much, or any, scientific basis for the expensive treatments he’s being peddled.
- lispisok 3y ago
  "Leaky gut" is the exact same kind of pseudoscience and quackery
  - FollowingTheDao 3y ago
    Leaky gut is not pseudoscience. It’s actually a real medical condition called intestinal permeability. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8427160/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8427160/ That’s not to say that any quack can just diagnose you with intestinal permeability without doing any tests, so I agree with you on that.
    - haldujai 3y ago
      I think you may be misunderstanding this article. Intestinal permeability is not a diagnosis in this paper, they are referring to the physical permeability of the gut which can be altered in many diseases and is not in dispute (i.e. "altered gut permeability" is a symptom of a disease, not the disease itself). "Leaky (or permeable) gut syndrome" is not a recognized disease.
      - FollowingTheDao 3y ago
        No, I did not misunderstand. Having higher intestinal permeability is a disorder that causes suffering. Call it whatever you want, it increases autoimmunity issues. https://gut.bmj.com/content/55/10/1512 https://gut.bmj.com/content/55/10/1512 "increased intestinal permeability is observed in association with several autoimmune diseases. It is observed prior to disease and appears to be involved in disease pathogenesis;"
        haldujai 3y ago
        Right, I don't think anyone doubts that altered intestinal permeability may be seen in several conditions. The etiological theory of "leaky gut" (i.e. leaky gut is the cause of disease) is not accepted in medicine. This article again suggests a theoretical mechanism that altered gut permeability is involved in the pathogenesis of an autoimmune disease and the evidence cited does not exclude the possibility of a common etiology[0], it also does not suggest the presence of a "leaky gut disorder". As an aside an association does not mean causation and in any case does not discriminate between symptom vs disorder. A fever is associated with nearly every infection, it doesn't cause it. [0]e.g. 'These studies provide intriguing data that abnormal permeability may be involved in disease pathogenesis, although they cannot exclude an alternative explanation that mild gut damage (measured by increased permeability) is associated with the development of IBS by another mechanism. ' from the IBS studies cited.
nerdponx 3y ago
I know someone who had bipolar disorder until it turned out they just had celiac disease.

haldujai 3y ago

Lyme disease can be “autoimmune” like in clinical manifestation but is more accurately described as a tick borne infectious disease treated primarily with antibiotics, as opposed to the viruses being discussed here which are more weakly linked and treated with immunosuppressants.

PragmaticPulp 3y ago

Be careful with anything related to “chronic Lyme”. While it is true that Lyme disease can trigger long-term symptoms, Lyme has also become a catch-all haven for pseudoscience practitioners and quackery. It has become so bad that most patients with unexplained chronic conditions who use internet health forums will eventually go through a phase where they think they might have Lyme disease. The “chronic Lyme” alternative medicine industry has evolved to cater to these desperate patients by offering convenient, albeit unprovable, answers to the question of what’s causing their symptoms. The chronic Lyme proponents claim that it can’t be tested for, won’t show up on normal tests, or can only be diagnosed through vague symptoms. As a result, anyone showing up with vague symptoms gets a diagnosis of chronic Lyme. Their proposed treatments usually involve extended rounds of expensive antibiotics which have no proof of working and have not shown any difference from placebo in clinical trials of supposed “chronic Lyme” patients. Sadly, some quick research on the musician you cited shows that he has been taken by one such alternative medicine practitioner and has been attempting to raise tens of thousands of dollars to pay this practitioner for antibiotic treatment. I’m sorry to say but I suspect this musician has been caught up in the chronic Lyme alternative medicine industry without much, or any, scientific basis for the expensive treatments he’s being peddled.

lispisok 3y ago
"Leaky gut" is the exact same kind of pseudoscience and quackery
- FollowingTheDao 3y ago
  Leaky gut is not pseudoscience. It’s actually a real medical condition called intestinal permeability. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8427160/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8427160/ That’s not to say that any quack can just diagnose you with intestinal permeability without doing any tests, so I agree with you on that.
  - haldujai 3y ago
    I think you may be misunderstanding this article. Intestinal permeability is not a diagnosis in this paper, they are referring to the physical permeability of the gut which can be altered in many diseases and is not in dispute (i.e. "altered gut permeability" is a symptom of a disease, not the disease itself). "Leaky (or permeable) gut syndrome" is not a recognized disease.
    - FollowingTheDao 3y ago
      No, I did not misunderstand. Having higher intestinal permeability is a disorder that causes suffering. Call it whatever you want, it increases autoimmunity issues. https://gut.bmj.com/content/55/10/1512 https://gut.bmj.com/content/55/10/1512 "increased intestinal permeability is observed in association with several autoimmune diseases. It is observed prior to disease and appears to be involved in disease pathogenesis;"
      - haldujai 3y ago
        Right, I don't think anyone doubts that altered intestinal permeability may be seen in several conditions. The etiological theory of "leaky gut" (i.e. leaky gut is the cause of disease) is not accepted in medicine. This article again suggests a theoretical mechanism that altered gut permeability is involved in the pathogenesis of an autoimmune disease and the evidence cited does not exclude the possibility of a common etiology[0], it also does not suggest the presence of a "leaky gut disorder". As an aside an association does not mean causation and in any case does not discriminate between symptom vs disorder. A fever is associated with nearly every infection, it doesn't cause it. [0]e.g. 'These studies provide intriguing data that abnormal permeability may be involved in disease pathogenesis, although they cannot exclude an alternative explanation that mild gut damage (measured by increased permeability) is associated with the development of IBS by another mechanism. ' from the IBS studies cited.

nerdponx 3y ago

I know someone who had bipolar disorder until it turned out they just had celiac disease.