Anonymous wrote:

Anonymous wrote:Ok, dumb question…how did you know you had it? What test did you take? That even seems sketchy. Did you see a local doctor, who?

Tavicare deals with Lyme disease treatment and they really helped me.

Did you do SOT? Their site says it is 3650 per treatment. And may take 7-10 treatments per year. How on earth…do people do this? did you need that? I could never afford that.

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?

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.

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.

If you have “chronic lyme” there’s no evidence on the blood tests? Or muscle tests? I forget the different tests that can confirm a recent infection where you take antibiotics.

I hear you, OP. I’ve been dealing with Lyme for a year now and it’s been a bit of a nightmare.

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.

OP where are you located?

I hope in our lifetime there will be big breakthroughs about chronic Lyme, long covid, fibromyalgia etc. I can’t believe it’s not all related.

Anonymous wrote:Ok, dumb question…how did you know you had it? What test did you take? That even seems sketchy. Did you see a local doctor, who?

Tavicare deals with Lyme disease treatment and they really helped me.

Ok, dumb question…how did you know you had it? What test did you take? That even seems sketchy. Did you see a local doctor, who?

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.

All of this ^^.

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.

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?

If it was not caught right away, there's no "treatment" for chronic Lyme. Treat the symptoms. Give your body time to heal. It will happen but on its own timetable.

My neighbor just told me she has Lyme disease. She said that in addition to dealing with the symptoms, it's really difficult to find a doctor. And she mentioned that the doctors don't usually take insurance, so it's very costly.

Good luck.

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?