6 ms·

The testing and treatment of tick borne pathogens is a fine line between politics, science and empathy is because many people have been treated poorly by the me

The testing and treatment of tick borne pathogens is a fine line between politics, science and empathy is because many people have been treated poorly by the medical industry. The majority of the symptoms are ignored by physicians or misdiagnosed. In many cases, co-infections or existing immuno-suppressive conditions are ignored by physicians. That's happened to a number of people I know. It is very common for most practitioners to be ignorant of: HLA DR gene types (can accumulate metals, mycotoxins, lyme toxins, etc), the nature of the Lyme bacteria strains: spirochtte (reproductive, doxycycline susceptible), round bound starvation form (resistant to most antiobiotics), and the nature of biofilm colonies (antibiotic resistant) that exist in nature and our bodies. Furthermore, most physicians do not know what labs and tests to apply to a patient: Igenex and Galaxy labs for Lyme, Bartonella, Babesia, etc testing; c3a, c4a, tgf-b1, mmp-9, inflammation markers. In short, each human phenotype, genetic expression, and immune context are all highly unique ... which means that every case is different. Inflammation from our immune response is the primary driver of symptoms and is very, very often mis-diagnosed as something else like MS or dementia (happened to a number of people I know). We need a lot more data to finally help educate physicians and bring the vast majority them out of the stone age. We need to educate everyone on complex systems, nutrition, and biology instead of just authority.

ep103 7y ago
Sounds like a classic medical business opportunity for an all-in-one testing device sold to doctor's offices in high-lyme areas
- airstrike 7y ago
  Great. I just Googled "lyme disease map" after reading through a bunch of comments and now I'm terrified to live in NY
  - _wzsf 7y ago
    Not for the faint of heart: https://www.cdc.gov/lyme/stats/maps.html https://www.cdc.gov/lyme/stats/maps.html
    - deleted 7y ago
      [deleted]
    - evandev 7y ago
      Note that this is most likely a population map. That's why Western Mass, Adirondacks, and north of Bar Harbor are nearly void. Each dot represents "patient’s county of residence."
      - klipt 7y ago
        Not quite, it's definitely more clustered in the northeast than population (which has sizeable centers in Texas, California, etc)
      - eigenloss 7y ago
        Each dot is placed randomly within each patient's county of residence.
      - alexhutcheson 7y ago
        It's very different than a population map. To see, you can compare it with this map from the Census: https://www.census.gov/dmd/www/pdf/512popdn.pdf https://www.census.gov/dmd/www/pdf/512popdn.pdf
technofiend 7y ago
>The testing and treatment of tick borne pathogens is a fine line between politics, science and empathy is because many people have been treated poorly by the medical industry. The majority of the symptoms are ignored by physicians or misdiagnosed. In many cases, co-infections or existing immuno-suppressive conditions are ignored by physicians. That's happened to a number of people I know. My aunt eventually lost her job and had to sell her Austin home after mounting medical bills due to misdiagnosed Lyme disease. She had an early false negative for the disease and spent years chasing "chronic fatigue" cures because there was no explanation for her illness. Once she decided she had chronic fatigue I doubt it did anything to her credibility with the rank and file medical community as that seems to be a generic bucket for a whole raft of symptoms. She was eventually tested again for Lyme which was positive but by that time it had devastated her financially and physically. She has permanent heart damage, blood pressure issues, regularly suffers minor seizures and has zero energy.
deleted 7y ago
[deleted]
sooheon 7y ago
Just reading up about this issue. Root cause for the controversy seems to be difficulty of diagnosis. What prevents development of a "smoking gun" detector for lyme, finding the actual lyme causing bacteria in vivo in humans with symptoms?
- eigenloss 7y ago
  There isn't a "smoking gun" detector for Lyme in much the same way that there isn't a "smoking gun" detector for cancer. Diagnosing Lyme with blood tests is only one tiny piece of the controversy around Lyme.
  - sooheon 7y ago
    For cancer, you can do a biopsy and know for sure. The equivalent would seem to be presence of the bacterial infection in the body.
    - epmaybe 7y ago
      Right, but if you could do it for Lyme couldn't you do it for every bacteria? Blood testing would be our best bet, and we already do that with Lyme antibody testing and Lyme DNA testing. The main problem is that they are very expensive tests (usually a couple hundred dollars, and not always covered by insurance) and thus you need enough clinical suspicion to make the call to get something like that. How do you further increase your suspicion when you have a disease that mimics a lot of other diseases, without breaking the bank?
      - sooheon 7y ago
        Antibody testing seems to have wiggle room, which causes people to assume they have Lyme whatever the result. If they believe chronic Lyme is ruining their lives, and long term antibiotics will help, why not take a conclusive test that actually finds the bacteria and know for sure? What's missing from all these anecdotes is that they go from not being sure of the diagnosis, to trying a fringe treatment against the recommendation of multiple medical bodies.

ep103 7y ago

Sounds like a classic medical business opportunity for an all-in-one testing device sold to doctor's offices in high-lyme areas

airstrike 7y ago
Great. I just Googled "lyme disease map" after reading through a bunch of comments and now I'm terrified to live in NY
- _wzsf 7y ago
  Not for the faint of heart: https://www.cdc.gov/lyme/stats/maps.html https://www.cdc.gov/lyme/stats/maps.html
  - deleted 7y ago
    [deleted]
  - evandev 7y ago
    Note that this is most likely a population map. That's why Western Mass, Adirondacks, and north of Bar Harbor are nearly void. Each dot represents "patient’s county of residence."
    - klipt 7y ago
      Not quite, it's definitely more clustered in the northeast than population (which has sizeable centers in Texas, California, etc)
    - eigenloss 7y ago
      Each dot is placed randomly within each patient's county of residence.
    - alexhutcheson 7y ago
      It's very different than a population map. To see, you can compare it with this map from the Census: https://www.census.gov/dmd/www/pdf/512popdn.pdf https://www.census.gov/dmd/www/pdf/512popdn.pdf

technofiend 7y ago

>The testing and treatment of tick borne pathogens is a fine line between politics, science and empathy is because many people have been treated poorly by the medical industry. The majority of the symptoms are ignored by physicians or misdiagnosed. In many cases, co-infections or existing immuno-suppressive conditions are ignored by physicians. That's happened to a number of people I know. My aunt eventually lost her job and had to sell her Austin home after mounting medical bills due to misdiagnosed Lyme disease. She had an early false negative for the disease and spent years chasing "chronic fatigue" cures because there was no explanation for her illness. Once she decided she had chronic fatigue I doubt it did anything to her credibility with the rank and file medical community as that seems to be a generic bucket for a whole raft of symptoms. She was eventually tested again for Lyme which was positive but by that time it had devastated her financially and physically. She has permanent heart damage, blood pressure issues, regularly suffers minor seizures and has zero energy.

deleted 7y ago

[deleted]

sooheon 7y ago

Just reading up about this issue. Root cause for the controversy seems to be difficulty of diagnosis. What prevents development of a "smoking gun" detector for lyme, finding the actual lyme causing bacteria in vivo in humans with symptoms?

eigenloss 7y ago
There isn't a "smoking gun" detector for Lyme in much the same way that there isn't a "smoking gun" detector for cancer. Diagnosing Lyme with blood tests is only one tiny piece of the controversy around Lyme.
- sooheon 7y ago
  For cancer, you can do a biopsy and know for sure. The equivalent would seem to be presence of the bacterial infection in the body.
  - epmaybe 7y ago
    Right, but if you could do it for Lyme couldn't you do it for every bacteria? Blood testing would be our best bet, and we already do that with Lyme antibody testing and Lyme DNA testing. The main problem is that they are very expensive tests (usually a couple hundred dollars, and not always covered by insurance) and thus you need enough clinical suspicion to make the call to get something like that. How do you further increase your suspicion when you have a disease that mimics a lot of other diseases, without breaking the bank?
    - sooheon 7y ago
      Antibody testing seems to have wiggle room, which causes people to assume they have Lyme whatever the result. If they believe chronic Lyme is ruining their lives, and long term antibiotics will help, why not take a conclusive test that actually finds the bacteria and know for sure? What's missing from all these anecdotes is that they go from not being sure of the diagnosis, to trying a fringe treatment against the recommendation of multiple medical bodies.