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+.

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.

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.)

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.

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+.

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.

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.

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.