Taking the bite out of Lyme disease

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

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 everything that ends in -itis too Sinusitis, Arthritis, Tendonitis, etc.

I know that is a bit of a tangent, but you reminded me of someone who had bell's palsy telling me that it was actually shingles. I explained that just because it was caused by shingles doesn't mean it stops being Bell's Palsy, just like how it is still a cough if it's from the flu or from smoking. They ended up getting really angry at me about it, but I think hn might appreciate the semantics a bit more.

Doxycycline is my favorite antibiotic and the most effective against chronic sinusitis and chronic prostatitis for me. I only take it maybe once a year, but it does wonders for a good long time.

It also cured my nearly lifelong IBS-D about a decade ago. I had a small re-occurrence of IBS-D last year after so many years without it. I was able to convince the doc that it fixed it for me in the past, so he prescribed me doxycycline again. Boom! All fixed just like before.

I have no idea why that particular antibiotic does the trick, but I've taken so many others from amoxicillin line, bactrim, even cipro, flagyl (gross) etc. and only doxy is the silver bullet for me it seems.

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. Maybe that regime is helping or maybe I'm just fortunate.

My kid contracted it from a tick bite while camping in Ontario; it showed as joint pain in the legs that would come and go for like a week at a time. Made it tough to explain to the doctors as by the time we'd get there, he'd be fine again.

In the end it was four weeks of doxycycline— that was several months ago and it doesn't seem to have recurred, thankfully.

A couple of years ago I had about 10 tick bites and one of them resulted in the signature bull’s-eye rash. Thankfully, I was aware of the ticks and I was checking for the bull’s-eye rash to appear and it got treated with doxycycline.

Many people face symptoms months after the bite or they might not remember getting bitten by a tick so it’s common that it is misdiagnosed and they get all kinds of ineffective and / or unnecessary meds, so I added it to my “list of illnesses to check” in case I ever get unexplainable neurological issues, fatigue and joint problems.

Disclaimer: Not a doctor.

I think you’re alluding to this in your last statement, but standard treatment for Lyme can absolutely wreck your natural gut microbiome. This could explain some of the lingering chronic effects post-treatment. Did you try supplementing with fermented foods or probiotics after completing dox?

> It is also great they speak to the chronic lyme condition because many people get accused of it being psychosomatic or even false (similar with long Covid).

I have a friend who worked in research for rare, chronic, and misunderstood diseases for a few years. Post Treatment Lyme Disease Syndrome (PTLDS or just PTLD) is well accept by now.

The problem they encountered was that so many of the people who presented with "Chronic Lyme" diagnoses were either self-diagnosed from the internet or diagnosed by uninformed primary care doctors who used it as a catch-all for symptoms they couldn't diagnose. Many had never received positive test results, or they had received positive test results from cash-pay alternative medicine labs who used their own in-house alternate tests.

It was really depressing to hear stories about people who had been misled into spending tens or hundreds of thousands of dollars on things like year-long courses of expensive, IV antibiotics for a condition they most likely did not have. Even the idea of a persistent infection hasn't held up to scrutiny. The current line of thinking is shown in this article, where persistent particles of past infection might cause ongoing immune-related symptoms. Those symptoms would not respond to the high-dose, long-term antibiotic therapy pushed by the alternative medicine Lyme treatment providers, obviously.

So while it's a difficult topic, having some better mechanism to separate the verified Lyme cases from the self-diagnosed or those wrongly diagnosed is actually very important for improving acceptance of the condition. It's tragic that many with persistent symptoms of true Lyme infections have been dismissed, but it's also tragic that many with non-Lyme conditions have been misled into thinking that "Chronic Lyme" is the explanation for all of their problems contrary to the evidence. Getting the latter group out of the "Chronic Lyme" mindset and on to a path where their true underlying condition can be addressed, whatever it may be, is a win for them.

Its sad that we needed to have a partially avoidable mass death due to COVID in order for people to start considering these chronic conditions more broadly in society. People have been having these issues for generations.

> Not sure when, if ever, they'll be cured because when you don't treat Lyme disease within a few months of infection, it digs in and is incredibly difficult to kill

FYI, the idea that active infection continues to exist in hiding within the body is a fringe theory.

The linked article talks about one of the current theories for why some patients have persistent symptoms after the infection is treated. The theory involves certain components of the past infection lodging themselves in the liver where they persist and can cause symptoms.

This is a difficult topic because some alternative Lyme treatment providers will tell patients they have a persistent infection and then subject them to years of high-dose antibiotics with no scientific basis, which can create a separate set of problems without addressing anything.

Same. Family member who lived out around Utah and Colorado. She had been racked with pain for something like 15-20 years. She was going to doctors constantly, trying to figure out what was wrong. She was labeled as a "drug seeker" and got shoved around for years as a result.

Later on, she came across a doctor who happened to used to live in the North East and recognized it as Lyme disease pretty much instantly. She still deals with pain on a constant on-going basis, but has been slightly lessened with more targeted medications, etc. Hopefully something like this can offer her and others like her some sustainable, long-term relief.

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.

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 decades existence.