So, Lyme disease treatment is a cottage industry?

[Anonymous]

If you have something doctors are trained to recognize (Bell’s palsy) they will jump on that and order Lyme test. The problem is if you come in with subtle to not so subtle gi issues, a growing list of joint pains, confusion you’re chalking up to being busy/overwhelmed, migraines you’re chalking up to perimenopause, etc etc they’re most likely never going to think infection.

[Anonymous]

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.

This x 1000000. There are loads of unscrupulous charlatans making a living off of convincing people their miscellaneous non-specific symptoms in the absence of any confirmatory objective testing is still “chronic Lyme” and they routinely harm people with unindicated, ineffective and unnecessary treatment whose only results are placebo effects. And yet, people are so anti-doctor in this area and in this country (bc we hate elites who are not us—why trust decades of education & training when there’s google), that they reserve their mistrust and scorn for the actual honest professionals and put their faith in snake oil sellers who tell them what they want to hear.

[Anonymous]

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 should start with an infectious disease doctor. Lyme is an infection and the infectious agent responds extremely well to doxycycline by dying en masse.

[Anonymous]

I can’t tell you the number of people I’ve seen who carry a diagnosis of “chronic Lyme” of the central nervous system and yet have never had a spinal tap to confirm it. Such BS. And yes, I get the tap. Not one of these people has ever tested positive in their spinal fluid.

[Anonymous]

I reserve judgment on chronic Lyme syndrome.

What I do know is that some people single-mindedly pursue that diagnosis and that there are doctors who will facilitate it, to the exclusion of other possibilities. What this means is that they find themselves in treatment for chronic Lyme and untreated for another disorder they may actually have.

[Anonymous]

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.

This x 1000000. There are loads of unscrupulous charlatans making a living off of convincing people their miscellaneous non-specific symptoms in the absence of any confirmatory objective testing is still “chronic Lyme” and they routinely harm people with unindicated, ineffective and unnecessary treatment whose only results are placebo effects. And yet, people are so anti-doctor in this area and in this country (bc we hate elites who are not us—why trust decades of education & training when there’s google), that they reserve their mistrust and scorn for the actual honest professionals and put their faith in snake oil sellers who tell them what they want to hear.

This right here.

[Anonymous]

Anonymous wrote: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+.

Horowitz is a quack.
https://lymescience.org/red-flags-of-lyme-quackery/

OP please don’t listen to this PP. You will waste tons of time and money.

[Anonymous]

Has anyone gone to the infectious disease department at Medstar Georgetown? They list Lyme and other tick-borne diseases.

(I had a tick bit with rash, treated with doxy, still have symptoms.)

[Anonymous]

I think the link above is extremely harmful. If long covid sufferers hadn’t emerged in large numbers at the same time and included medical personnel their symptoms would have been discounted. Lyme and the coinfections are a slow trickle. We now know long covid is real. There is emerging evidence it is in some part due to persistence of the organism. It’s not a leap to put Lyme+ in a similar basket. The veterinary world is getting ahead of this as their practitioners are disproportionally affected. I also suggest the Washington post book. There are many charlatans out there. I’m not denying that at all. However many of the points in this link are demonstrably false. Also the Johns Hopkins dept mentioned above is only if you have Lyme and are not coinfected. So a great resource for some but not all.

[Anonymous]

Anonymous wrote:I think the link above is extremely harmful. If long covid sufferers hadn’t emerged in large numbers at the same time and included medical personnel their symptoms would have been discounted. Lyme and the coinfections are a slow trickle. We now know long covid is real. There is emerging evidence it is in some part due to persistence of the organism. It’s not a leap to put Lyme+ in a similar basket. The veterinary world is getting ahead of this as their practitioners are disproportionally affected. I also suggest the Washington post book. There are many charlatans out there. I’m not denying that at all. However many of the points in this link are demonstrably false. Also the Johns Hopkins dept mentioned above is only if you have Lyme and are not coinfected. So a great resource for some but not all.

There is actually no evidence that "long COVID" is any more common than post-viral reactions as a general matter. Of course those are really a thing, but doctors have always known that.

That said, the big issue in Lyme world is people insisting they have lyme 1+ years on with no definitive Lyme symptoms during the early/normal illness period, absolutely no diagnostic testing that indicates Lyme & a constellation of symptoms that could literally be anything (including a post-viral reaction). It does not mean that Lyme doesn't exist (of course it does) or even that some small number of these cases could be Lyme... but most of them are not & they are quacks praying on actually sick patients.

[Anonymous]

Anonymous wrote:Has anyone gone to the infectious disease department at Medstar Georgetown? They list Lyme and other tick-borne diseases.

(I had a tick bit with rash, treated with doxy, still have symptoms.)

FWIW this is not the controversial kind of Lyme. You have Lyme. You will find a non-quack doctor to help you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Has anyone gone to the infectious disease department at Medstar Georgetown? They list Lyme and other tick-borne diseases.

(I had a tick bit with rash, treated with doxy, still have symptoms.)

FWIW this is not the controversial kind of Lyme. You have Lyme. You will find a non-quack doctor to help you.

But it has been really, really hard finding one!

[Anonymous]

And this is the problem. Regular docs are not going to treat this at all. The Lyme docs are few and far between and within that group there is a wide variety of scruples/training. We need more research to standardize treatments. We need more trained doctors to take a crack at this. We need to stop the stigma around this disease of it being some sort of fabrication.

OP if you have a rash or only Lyme I’d try Hopkins as it’s closest. Call the number linked to the name one of the PPs listed above so you *don’t* get directed to ID and instead get put through to Lyme clinic.

If you are coinfected I’d see Dr. Mozayeni. He is local, trained in rheumatology at Yale and worked at NIH. He has talks posted as well about the coinfections so he will definitely handle those. I doubt he would need you to come to him with test results in advance and could order but am not certain.

Good luck

[Anonymous]

Can the person who did SOT describe their experience?

[Anonymous]

Anonymous wrote: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+.

“congential lyme” isn’t a thing, crazy lady

https://www.who.int/standards/classifications/frequently-asked-questions/congenital-lyme-disease