PP here with the 10 year delay. I’m doing the horowitz protocol. He is training doctors so it will be easier to access. The doctor here I recommended does some of the core antibiotics for a much longer course. The protocol I am on is a much larger combo of antibiotics/antimalarials but for shorter course of time. Take home points of this mess I would say are:
1. If you’re sick you need to check for more than just Lyme. You’re likely co-infected with many strains or multiple organisms (babesia, bartonella, etc).
2. If you’re a woman take a close look at your kids if you’re positive. It can be spread congenitally and this is vastly under appreciated. Kids have mainly behavioral /neurologic systems affected before the physical.
3. Functional medicine doctors can most likely get you a diagnosis as they use better tests ( igenex, t lab, some do vibrant but most Lyme docs don’t prefer this one). Molecular studies are the way to go as you just won’t have a reliably working immune system if you’ve had this for a while.
4. You’ll likely try one or more doctors depending on who you stumble upon and what works for you. There is no set practice yet as persistent Lyme+ was completely ignored by the cdc for decades. Lots of doctors still doing things that don’t work ( I’m looking at you doxycycline alone). ILADS at least has the group but even within that there is a lot of variability in treatments offered. What works for some doesn’t for others for a variety of reasons.
5. This can affect every single system in your body. Every. Single. One. It is helpful to have the diagnosis as a good lyme doctor will at least be aware of this and many symptoms will go away with treatment. This versus having 15 doctors for your 15 malfunctioning parts of your body… all of whom don’t talk to each other and most likely don’t understand lyme+.

Anonymous wrote:OP here. I have an orthopedic doctor telling me that I should look “into Lyme”. I have a first appointment with a rheumatologist because I assumed that’s where I should start. I had no idea this world of Lyme controversy existed. I just wanted to take a test to rule it out. I’m not exactly outdoorsy, so I have no idea how I would have gotten it.

My PCP was very quick to prescribe a Lyme test when I had symptoms that are correlated to Lyme (Bells Palsy.) Just ask the rheumatologist.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Yes, Lyme, is the wild, wild west - kind of like TMJ.

While healthy skepticism is a good thing, the fact that mainstream medicine says it doesn't exist is ridiculous. Look into Lyme literate doctors and go from there. I had SOT treatment for my lyme, and my lyme is gone. It was expensive, but it worked.

No doctor claims Lyme disease doesn't exist.

Some doctors claim that chronic lyme syndrome is a nebulous, hard to pin down, possible psychosomatic disorder. Which is different. Everyone knows Lyme is a real thing- it's treated by common antibiotics

If you miss the original lyme and never have the antibiotics, the assumption is that the body clear it on its own (because you didn't die of a bacterial infection) but you tend to test negative for it (it is cleared) but you have after-effects? Am I getting that right?

No. The Lyme test is for antibodies which would persist even if there is no active infection. The test is not 100% accurate of course.

It is most likely an std. YOU don’t have to be the outdoorsy one.

Anonymous wrote:OP here. I have an orthopedic doctor telling me that I should look “into Lyme”. I have a first appointment with a rheumatologist because I assumed that’s where I should start. I had no idea this world of Lyme controversy existed. I just wanted to take a test to rule it out. I’m not exactly outdoorsy, so I have no idea how I would have gotten it.

You can get it anywhere. My Lyme-infected tick was in an urban DC park by a playground. It’s increasingly common around here.

OP here. I have an orthopedic doctor telling me that I should look “into Lyme”. I have a first appointment with a rheumatologist because I assumed that’s where I should start. I had no idea this world of Lyme controversy existed. I just wanted to take a test to rule it out. I’m not exactly outdoorsy, so I have no idea how I would have gotten it.

Anonymous wrote:I’m in year 2 of treatment. Missed diagnosis over a decade thanks to lack of awareness in medical community and really shitty western blot reliability. Try mozayeni in bethesda. He owns? invented? TLab. Closest thing I’ve seen here to what you’re looking for. I go to New York for treatment. It has given me back my life. And yes I had doctors tell me to my face this doesn’t exist. I recommend saving every single one of your medical expenses for submission. I’ve had about half covered by insurance. At some point the number of us with this will force the system to acknowledge chronic Lyme exists and it’s not just going to go away. - a doctor

Please tell us more. What kinds of treatments?

Johns Hopkins has the Lyme Disease Research Center and it is excellent. It’s located in their center in Timonium north of Baltimore. It is best if you pcp will refer you, but I think you can also self refer. You have to provide medical records. They have done some of the best research on long term Lyme. Dr.John Accott directs the center and there are other clinicians. They don’t have a magic bullet, but understand the condition and stay with people to find treatments that help.

I’m in year 2 of treatment. Missed diagnosis over a decade thanks to lack of awareness in medical community and really shitty western blot reliability. Try mozayeni in bethesda. He owns? invented? TLab. Closest thing I’ve seen here to what you’re looking for. I go to New York for treatment. It has given me back my life. And yes I had doctors tell me to my face this doesn’t exist. I recommend saving every single one of your medical expenses for submission. I’ve had about half covered by insurance. At some point the number of us with this will force the system to acknowledge chronic Lyme exists and it’s not just going to go away. - a doctor

Anonymous wrote:

Anonymous wrote:Yes, Lyme, is the wild, wild west - kind of like TMJ.

While healthy skepticism is a good thing, the fact that mainstream medicine says it doesn't exist is ridiculous. Look into Lyme literate doctors and go from there. I had SOT treatment for my lyme, and my lyme is gone. It was expensive, but it worked.

No doctor claims Lyme disease doesn't exist.

Some doctors claim that chronic lyme syndrome is a nebulous, hard to pin down, possible psychosomatic disorder. Which is different. Everyone knows Lyme is a real thing- it's treated by common antibiotics

If you miss the original lyme and never have the antibiotics, the assumption is that the body clear it on its own (because you didn't die of a bacterial infection) but you tend to test negative for it (it is cleared) but you have after-effects? Am I getting that right?

Anonymous wrote:Who can you trust in DMV area to help you navigate it? Before I started researching some of my issues, I had no idea that 1) regular doctors won’t treat Lyme disease esp. long lasting 2) there are alternative practitioners that suck you in by preying on your pain and fears 3) you can’t even get straight answers on a test.

Is there anyone in this area that I can trust to help navigate?

What have you tried so far, OP?

Slightly off-topic, but OP you should read the book New York Times columnist Ross Douthat wrote about his battle with Lyme. He talks a lot about the struggle to find treatment and be taken seriously. I thought it was a great read and I don't even have Lyme.

https://www.amazon.com/Deep-Places-Memoir-Illness-Discovery/dp/0593237366/

Anonymous wrote:Yes, Lyme, is the wild, wild west - kind of like TMJ.

While healthy skepticism is a good thing, the fact that mainstream medicine says it doesn't exist is ridiculous. Look into Lyme literate doctors and go from there. I had SOT treatment for my lyme, and my lyme is gone. It was expensive, but it worked.

No doctor claims Lyme disease doesn't exist.

Some doctors claim that chronic lyme syndrome is a nebulous, hard to pin down, possible psychosomatic disorder. Which is different. Everyone knows Lyme is a real thing- it's treated by common antibiotics

Anonymous wrote:Why is chronic lyme said to not exist?

I was bit by a tick a few years ago. Found the tick on me and it was a bugger to pull out. When I called my doctor they strongly encouraged me to do a course of antibiotics because no one will test ticks anymore. All ticks in this area are presumed to have lyme since it’s so prevalent.

So if lyme is so prevalent in ticks, why do doctors believe chronic lyme doesn’t exist?

The CDC has a lot of good information: https://www.cdc.gov/lyme/postlds/index.html

There is definitely a post-Lyme syndrome with long-last symptoms after an actual Lyme infection. This can happen with a lot of different viral or bacterial triggers. My dad had an autoimmune condition triggered by a bacterial infection.

“Chronic lyme” is when there’s no actual evidence of a Lyme infection yet people claim all of their random symptoms are Lyme. Often treated by quacks with long term antibiotics.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Yes, Lyme, is the wild, wild west - kind of like TMJ.

While healthy skepticism is a good thing, the fact that mainstream medicine says it doesn't exist is ridiculous. Look into Lyme literate doctors and go from there. I had SOT treatment for my lyme, and my lyme is gone. It was expensive, but it worked.

um mainstream medicine absolutely does not say Lyme doesn’t exist. They say that “chronic Lyme” in the absence of any indicia you ever had Lyme at all doesn’t exist.

NP. I have long Lyme (tick bite, rash, etc). Mainstream doctors do not know how to treat it…they just chase and try to squash symptoms. “Alternative” practitioners claim to know how to treat, at exorbitant cost and insurance won’t even consider covering it. It feels impossible to know who to trust or what to do.

It’s insane.

yeah that’s different from the fake chronic lyme. but many diseases unfortunately are not simple to treat. that doesn’t mean there’s a conspiracy or that you can’t trust a mainstream doctor.