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.
>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.
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?
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.
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?
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.
You say all of these things, as a probably-not-100-year-old-human, about a genus of highly advanced shapeshifting spirochete bacteria that have spent the past (perhaps) 500 million years living in the bloodstreams and bodily tissues -- and evading the immune systems -- of billions of mammals and reptiles (and everything between) across the globe.
We only found out about these spirochetes in 1981. That's 38 years ago. You're probably older than that.
Yet you have cited precisely zero sources, arguing by shooting holes in straw men. For the love of <God>, and all that is holy, Sooheon: please base your opinions on evidence.
Not sure what rubbed you the wrong way, these are just questions I have as I read about this topic for the first time, trying to understand the controversy here. I'm not going to have reams of citations for you. If you have citations to throw at me feel free, but from what I can see, reliable medical bodies consider this to be a misdiagnosis at best.
Dna testing is available but has similar problems in that there's no standard to set a cutoff for limiting the number of false positives or false negatives. It's also even more expensive and very unlikely to be covered by insurance.
You can have hundreds of cancerous tumors in your body, each of which is far too small to biopsy. The same is roughly true for borreliosis. You are not making a cogent point here.
People have cancerous mutations all the time, yet those aren't the cancers that kill us. Cancers people die from tend to have grown, to a size you can detect. When someone suffers from life threatening cancer-like symptoms, it's not literally impossible to find whether they actually have it. This seems to be the case for chronic lyme, where the medical consensus is that there is "no reproducible or convincing scientific evidence of any relationship to Borrelia burgdorferi".
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."
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.