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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

#71
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?

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 winning strategy to ignore what they tell you most of the time.
    - They are not trained nor selected for empathy or open-mindedness.
And you get so many medical errors.

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 to face many such errors myself, two almost lethal.

When you can, shop for one that is both good and is open to discussion. But even then, there is a limit. At some point, your doctor WILL fail you, so you have to take responsibility, usually when you're weak and at a low point in your life.

And if you are wrong, people will tell you you should have listened to your doctor, but if the doctor is wrong, well, shit happens.

One of my practitioners is a friend of 15 years, I literally lived with him, he is considered top in his specialty. I'm surrounded by people working at the hospital.

He saved my life once.

Even that is not enough. I still have to double check stuff every time.

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

#72

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…

Funny enough I also got diagnosed with gout once in my 20s. I have always had somewhat bad toes/bunions (probably partially genetic, and partially wearing only tight soccer shoes as a kid) and I went to a wedding wearing some new leather shoes that I hadn't broken in yet. The next day I woke up with a fever and horrific pain in the sides of my toes. Went to doctor and they did some tests and were also seemingly surprised at the results indicating gout. They asked me to come back in a week to double check, and by then my symptoms were gone and the tests no longer indicated gout.

Our bodies are such strange mechanisms.

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

#74

Earlier quoted context omitted.

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…

Funny enough I also got diagnosed with gout once in my 20s. I have always had somewhat bad toes/bunions (probably partially genetic, and partially wearing only tight soccer shoes as a kid) and I went to a wedding wearing some new leather shoes that I hadn't broken in yet. The next day I woke up with a fever and horrific pain in the sides of my toes. Went to doctor and they did some tests and were also seemingly surpr…

> They asked me to come back in a week to double check, and by then my symptoms were gone and the tests no longer indicated gout.

Ha. Do you still have symptoms? If not, yea just a bad initial diagnosis. If you do still have symptoms sometimes though, it should be noted that gout is hard to test for when you're actively experiencing aggravated symptoms, as the uric acid crystals are lodged into your tissue and not freely available in the blood stream / urine. This exacerbated everything quite a lot, as when I was much younger I definitely got uric acid tests done when my symptoms were at their worst.

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

#75

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…

Do you have trouble reading other people's emotions?

Do you?

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

#76

I contracted Lyme disease while on vacation in Cape Cod last year. The first symptom was left-side facial paralysis, which my physician diagnosed as Bell's Palsy, so I spent two weeks on steroids before we figured out the real issue. Three weeks of doxycycline cured the Lyme but left feeling pretty wrecked for more than a month afterwards! I seem to have avoided the chronic symptoms some people experience, but a low-…

I'm on a second round of Doxy. The first was 21 days and now I have a 60 day prescription. It doesn't knock me out. I take the first dose early in the morning with a lot of water. I don't eat until noon, but not before first taking a capsule of probiotics to replenish gut bacteria. I take the second Doxy in the evening with a meal. Then 3 hours later I take another probiotic capsule to restore gut bacteria overnight.…

Which probiotic?

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

#77

Earlier quoted context omitted.

This is what the "fight" with "elite" universities is really about: No longer funding research. That's the most important aspect of this thing. Every other aspect of this is a sideshow to the main event. And the main event very much is the de-funding of scientific research. No longer funding this research is a huge change. And one that will eventually have far-reaching consequences for everyone.

I think it is even broader than that. It is removing any potential opposition. That opposition is independent institutions, such as universities, but also the truth itself. If there's no one to research things, then how will you know if something is "true" or not? If there's no one to communicate those findings, how will anyone find out? Etc.

Independent institutions is an oxymoron.

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

#78
post #67

Lyme disease does exist on the west coast, including in the Bay Area. A friend in Los Altos got Lyme disease from a tick in her yard. This is the worst time of year for ticks in the Bay Area. I've picked off over 100 ticks while doing field work in Henry Coe State Park. The one advantage we have on the west coast is that our ticks are larger and you usually notice when one starts crawling on your skin and especially…

A friend from Sacramento visited me in SoCal and brought his dog along. We hung out for a few days, and eventually I found a bullseye rash on my leg but no tick anywhere on my body. I went to urgent care and they recommended I see an infectious disease specialist, pronto -- and to start doxy that evening. My bloodwork came back with too few markers for them to call it a case of Lyme disease, but the specialist felt strongly that we made the right decision to use the antibiotics.

Everyone always told me there is no Lyme disease in NorCal. Reading your comment helped me feel vindicated.

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

#79
post #68
post #8

Earlier quoted context omitted.

There was, withdrawn in 2002. Protection wanes so even if you were one of the few who got it then you have no protection today. There are a couple new vaccines in the works, one in phase 3 testing so hopefully we get something in a few years.

It was withdrawn, but the approval was never revoked.

True, and I suppose the patent is expired by now so you could in theory start making it. Though the FDA has rules about how you can produce such things. Probably better for a company to risk/start a new vaccine which they can patent and thus get some benefit that way vs one out of patent. Also just because you can legally make it doesn't mean it is practical. It may require other things that are not longer made, or specific equipment that would be expensive to recreate. Still this is an opportunity for someone in India (where a lot of generic drugs are made already, though the country doesn't matter) if they want to.

I don't hike as much in areas where Lyme is common as I used to, but I'd still take a vaccine if I could. (I didn't know the vaccine existed in 2001 or I would have)

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

#80
"...doxycycline (and other generic antibiotics) wreak havoc on the microbiome, killing beneficial bacteria in the gut and causing troubling side effects..."

Doxycycline is used as prophylaxis for a wide variety of pathogens; either the risk is tolerable with them, or the alarm is needlessly elevated.

https://www.fitfortravel.nhs.uk/advice/malaria/doxycycline

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