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New studies offer insight into Lyme disease’s treatment, lingering symptoms

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Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#141
post #81

Earlier quoted context omitted.

Just to be pedantic, Bell's Palsy is the name of the condition not the cause. So it was Bell's Palsy caused by Lyme disease. I have noticed that the line between condition and cause is often overlooked, even by doctors. For example this leads to people thinking Pinkeye/conjunctivitis is highly contagious, when it is still conjunctivitis if it is caused by getting something in your eye. I think that holds for everythi…

Much of being a physician is pattern recognition - the vast majority of Bell's Palsy is idiopathic (generally viral), and thus that's how we usually treat it. If we tested everybody for everything everytime the health system(s) would collapse. It definitely helps as a patient to advocate, and add anything that a physician like myself maybe wouldn't always ask, like if you've been a tick-infested area and/or discovere…

I don't know why you're being down voted, of course you can't test for everything, and you're going to start with the most likely causes.

The frustrating part for me is when people think of the symptom as the cause. Like they understand that multiple things can cause a fever, but they don't understand that multiple things can cause bronchitis.

When I was a kid I had "sinusitis" multiple times a year, but my doctor never explained to me that it could be the same or different causes. When I learned that '-itis' just meant inflammation, it blew my mind. I have done my best to spread that knowledge ever since.

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#142

Earlier quoted context omitted.

Why have I heard so many stories of doctors not wanting to diagnose something as Lyme disease?

Doctors are trained to be arrogant, dismissive of unknown unknowns, and with a terrible understanding of statistics. Add to that: - They have a lot of patients and not enough sleep. - They need to pay back a huge student loan. - They hold terrible responsibilities and risk being sued. - They don't have much time for themselves, let alone update their knowledge. - Most patients are overreacting idiots, so it's a winni…

"Basically, you have to double-check everything they do, and endure their cynical rebuttal when you make suggestions, ask questions or try things they didn't request."

I had frequent headaches and the student health service referred me to a well-known and very respected hospital for tests as an outpatient. The doctor to whom I was referred was a well-known neurologist with papers to his name—probably the most eminent neurologist in the country at the time (even now, some decades after his death, his name appears on Wiki as someone of eminence).

He then sent me for a series of tests at the hospital and they extended over a number of days although not consecutive (which was inconvenient). Those tests were rather exhaustive and included amongst others neurological tests, brain x-rays, electroencephalographs and testing my eyes including injecting fluorescein into my veins to improve the contrast of the photos they took of my eyes/retina—afterwards I was pissing out that brilliant florescent yellow dye for the better part of a day.

Keep in mind that those tests involved other doctors and clinicians who would have examined the neurologists report, so decisions weren't taken in isolation.

After all that and multiple visits to the hospital he said that they could find nothing wrong with me and suggested that I be admitted for at least three days for further tests! I declined as I was about to have uni exams and never did return to be admitted.

Several months later I visited a local GP practitioner because I'd had a bad dose of the flu and after he'd dealt with that I mentioned my ordeal at the hospital.

He was palpably furious and mumbled quietly under his breath which was just audible enough for me to hear "fucking idiots". Within a split second he went on to say "presumably during all this testing no one actually suggested that you might have migraine?" to which I replied "no". That made him even more annoyed.

He then prescribed a common Parke Davis formulation called Ergodryl, which, back then, was a common go-to drug for migraine, it's a formulation of egotamine tartrate, caffeine and diphenhydramine (a well-known antihistamine).

Problem solved, that drug completely killed my headaches. I've never forgotten that incident and although I've experienced similar inept performances I've never experienced one on that scale again. Ever since I've never fully trusted a medical diagnosis unless confirmed by second options and backed up with tests. It pays to be not only cautions but also to do one's own independent investigations.

From my experience, not all doctors are mediocre to the extent that I'd wished I'd seen another, some I've visited are quite exceptional and have an innate ability to cut to the core of a problem immediately, or at least start investigations on the right footing. Unfortunately, from my experience, they seem few and far between in numbers.

I was once introduced to a state director of health (the State's top medical officer) through a common interest outside of medicine and I got to know him relatively well. Some time later I mentioned that incident and he said to me without hesitation that he would not trust 90% of his profession to make a competent diagnosis, and he went on to say that if I were ever to be stricken by some dangerous life-threatening disease that I was to give him a call and he'd provide me with a short list of the competent ones who he'd trust—one's that he would go to if he became sick. Fortunately, to date I've never had need to take up his offer.

Frankly, for the lay person this has to be a significant worry. How on earth does one know who is competent and who is not, especially if it's at short notice?

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#143
post #52

My mother got a tick bite and felt off and the doctor told her she had allergies and sinus infection due to high pollen. Luckily my younger brother is a physician and told her to go back and ask for a Lyme disease test. They said okay but said Lyme disease is really rare and wasn’t necessary. Long story short she was positive but was caught early enough that 30 days Doxy was all she needed. That same year I was bitte…

always have to argue with a doctor to get a lyme test. i'm like come on please i spend a lot of time in the woods idgaf what you think i'm paying for it

Why don't you order one through labcorp in that case? Can't one just order and pay for bloodwork directly through a lab without a physician visit?

I am a physician in the US and have done this before (prior to medical school), so I had always thought it was (still) possible.

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#144
post #52

My mother got a tick bite and felt off and the doctor told her she had allergies and sinus infection due to high pollen. Luckily my younger brother is a physician and told her to go back and ask for a Lyme disease test. They said okay but said Lyme disease is really rare and wasn’t necessary. Long story short she was positive but was caught early enough that 30 days Doxy was all she needed. That same year I was bitte…

Why have I heard so many stories of doctors not wanting to diagnose something as Lyme disease?

Chronic Lyme Disease is a popular choice for hypochondriacs (or maybe they're actually right, who knows?) so it gets raised eyebrows when people think they have it.

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#145
post #64

Good time to remind people that right next to the town of Lyme CT is Plum Island Animal Disease Center, who happened to be researching tick based disease transmission when Lyme disease was first discovered (named after the town that had the first case). Crazy coincidence. https://www.defenseone.com/threats/2019/07/did-us-invent-lym...

Evidence of bacterium that causes Lyme disease was also found in the 5000+ year old "Iceman" mummy found in the alps. People have described the disease in the 1700s, 1800s and in the 1900s prior to the outbreak in Lyme. Ticks preserved alongside their animal hosts in 1800s biologic samples also are found to have it. Genetic sequencing of different bacteria samples suggests a much older evolutionary tree than a few de…

Bioweapon researchers use existing bacteria and virus to enhance them for weapon usage (I.e. coronavius gain of function research). So the fact that the bacterium previously existed in nature does not disprove that a version engineered to be spread via ticks was released.

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#146

Earlier quoted context omitted.

Why have I heard so many stories of doctors not wanting to diagnose something as Lyme disease?

I literally used to get laughed out of the clinic, told I was a healthy young male and just needed to exercise more. After a decade of this, I was finally diagnosed with gout, something doctors had just been lying about testing for. No one could believe someone could have gout in their 20s (It's been developing since my late teens and I've generally had arthritis my entire life, since I was a child). It took a physic…

I wonder if the medical textbooks only mention gout as a historical curiosity and not as a modern day disease. I have an older relative with gout, have met someone in their 30s with gout, and yesterday heard a story about an acquaintance with gout, so it's not that rare anymore.

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#147

Earlier quoted context omitted.

always have to argue with a doctor to get a lyme test. i'm like come on please i spend a lot of time in the woods idgaf what you think i'm paying for it

Why don't you order one through labcorp in that case? Can't one just order and pay for bloodwork directly through a lab without a physician visit? I am a physician in the US and have done this before (prior to medical school), so I had always thought it was (still) possible.

Labcorp doesn't appear to have a lyme test easily available to the public, but Quest does:

https://www.questhealth.com/product/lyme-disease-test-with-c...

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#148

Years ago I suddenly had a swollen knee. So painful that I barely can walk. I dragged myself to Kaiser thinking that I torn something in my knee. Later on, it was diagnosed as arthritis Doctor said it was incurable, and gave me a list of meds where the side effects looked worse than the disease. I rejected it, and started examining every piece of data known to mankind. This led to me to variety of things. First was b…

> oxygen therapy.

Like hyperbaric or just with a mask and a tank of o2 ?

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#149

Earlier quoted context omitted.

Doctors are trained to be arrogant, dismissive of unknown unknowns, and with a terrible understanding of statistics. Add to that: - They have a lot of patients and not enough sleep. - They need to pay back a huge student loan. - They hold terrible responsibilities and risk being sued. - They don't have much time for themselves, let alone update their knowledge. - Most patients are overreacting idiots, so it's a winni…

Makes you question, how bad could an all encompassing AI be at diagnosing given enough multimodal data

Another perspective on the underlying issue—do you suppose that MDs will be more easily replaceable with AI than nurses will be?

Re: New studies offer insight into Lyme disease’s treatment, lingering symptoms

#150

Earlier quoted context omitted.

always have to argue with a doctor to get a lyme test. i'm like come on please i spend a lot of time in the woods idgaf what you think i'm paying for it

Why don't you order one through labcorp in that case? Can't one just order and pay for bloodwork directly through a lab without a physician visit? I am a physician in the US and have done this before (prior to medical school), so I had always thought it was (still) possible.

have no idea, never heard of that. i'm an idiot when it comes to my health care. i've only ever been to the doctor when i have a problem. have been in and out of health insurance so to me going to the doctor is an extremely expensive thing to avoid. especially when doctors are dismissive about whatever issue i come with. i've never been for preventative care, don't even know what i would say when they ask what i'm there for.
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