So, Lyme disease treatment is a cottage industry?

[Anonymous]

Anonymous wrote: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.

probably because there are a million more likely causes than Lyme …

[Anonymous]

Anonymous wrote:

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

Listen, people like PP are all in. You will never convince her that chronic Lyme is not a thing. She and her doctors know something the entire rest of the medical community doesn’t. They’re like closet geniuses or something. And totally misunderstood. Don’t waste your breath.

[Anonymous]

Anonymous wrote:

Anonymous wrote: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.

probably because there are a million more likely causes than Lyme …

Seriously. I just turned 50. My GI system is completely unpredictable. I have stress urinary incontinence. I have achy joints when I get up in the morning. Random muscle/bone aches. My brain fog is a hilarious joke in my house. I get constant colds. My sinuses are a mess.

I don’t have Lyme. I’m freaking getting old. We all are.

[Anonymous]

That's me. I am frustrated with this thread. I spent five years feeling exhausted, anxious, with joint pain, neck pain, headaches. Unable to take a shower without a built in rest time, unable to walk more than a mile. I tried accupuncture, physical therapy, saw the neurologist, the rheumatologist, the PCP... was given gabapentin and offered lyrica, SSRI's, SNRIs, and other "preventatives." I kept a log of my symptoms and showed it to a wellness GYN I had been seeing for hormones and she said that it was a disease pattern, not a hormonal pattern. I had some markers for Lyme in my bloodwork and did the more sensitive Lyme labs which showed Lyme. And yes, I remember finding a tiny tick years ago and plucking it off my arm and moving on with my day.

I did one round of SOT and the first change iI noticed is that my energy is really back. My joint pain has greatly decreased, too. I have a lot more stamina and can actually do life. It took about a month for me to start feeling better. My labs show that my Lyme is gone. For me, it was worth the money (and I am lucky to be able to afford it). There are NIH studies that show that it is promising for Lyme and some other hard to treat illnesses. After all the other stuff I tried and feeling terrible for years, I figured it was worth a try.

It sucks to read this thread and all the people arguing that this is all in my head, and I am crazy. I'm sure there are unscrupulous doctors out there taking advantage of people, but let me tell you that "traditional" medicine doesn't have all the answers.

[Anonymous]

Anonymous wrote:That's me. I am frustrated with this thread. I spent five years feeling exhausted, anxious, with joint pain, neck pain, headaches. Unable to take a shower without a built in rest time, unable to walk more than a mile. I tried accupuncture, physical therapy, saw the neurologist, the rheumatologist, the PCP... was given gabapentin and offered lyrica, SSRI's, SNRIs, and other "preventatives." I kept a log of my symptoms and showed it to a wellness GYN I had been seeing for hormones and she said that it was a disease pattern, not a hormonal pattern. I had some markers for Lyme in my bloodwork and did the more sensitive Lyme labs which showed Lyme. And yes, I remember finding a tiny tick years ago and plucking it off my arm and moving on with my day.

I did one round of SOT and the first change iI noticed is that my energy is really back. My joint pain has greatly decreased, too. I have a lot more stamina and can actually do life. It took about a month for me to start feeling better. My labs show that my Lyme is gone. For me, it was worth the money (and I am lucky to be able to afford it). There are NIH studies that show that it is promising for Lyme and some other hard to treat illnesses. After all the other stuff I tried and feeling terrible for years, I figured it was worth a try.

It sucks to read this thread and all the people arguing that this is all in my head, and I am crazy. I'm sure there are unscrupulous doctors out there taking advantage of people, but let me tell you that "traditional" medicine doesn't have all the answers.

Amen PP, I am right there with you. Were you the person who went to Tavicare? While I am leery of anyone who wants to take my money, I’m also getting no answers from my doctor. I can’t just give up because people blow me off. The posters who are the most unpleasant about this are probably not people who have debilitating issues.

[Anonymous]

I’m right there with you too SOT person. If someone wants to say my holter monitor, mris, X-rays, blood tests, endoscopy results are in my head I just want to scream. I literally had lost the ability to read by the time I had a diagnosis. And yes I saw not one but 4 rheumatologists… none of them agreed and two said nothing was wrong. Please say where you got the SOT, I am intrigued.

[Anonymous]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9669415/

[Anonymous]

Anonymous wrote:I’m right there with you too SOT person. If someone wants to say my holter monitor, mris, X-rays, blood tests, endoscopy results are in my head I just want to scream. I literally had lost the ability to read by the time I had a diagnosis. And yes I saw not one but 4 rheumatologists… none of them agreed and two said nothing was wrong. Please say where you got the SOT, I am intrigued.

I got the SOT at Tavicare.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I’m right there with you too SOT person. If someone wants to say my holter monitor, mris, X-rays, blood tests, endoscopy results are in my head I just want to scream. I literally had lost the ability to read by the time I had a diagnosis. And yes I saw not one but 4 rheumatologists… none of them agreed and two said nothing was wrong. Please say where you got the SOT, I am intrigued.

I got the SOT at Tavicare.

DP. How many treatments did you require? PTLD-person here, and I'm curious about your experience.

[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.

Actually, that's not true in my experience. If you had Lyme and took antibiotics, they basically deny that any symptoms you develop later are not related to Lyme. How do they know that? I have no idea.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I’m right there with you too SOT person. If someone wants to say my holter monitor, mris, X-rays, blood tests, endoscopy results are in my head I just want to scream. I literally had lost the ability to read by the time I had a diagnosis. And yes I saw not one but 4 rheumatologists… none of them agreed and two said nothing was wrong. Please say where you got the SOT, I am intrigued.

I got the SOT at Tavicare.

DP. How many treatments did you require? PTLD-person here, and I'm curious about your experience.

I had one SOT treatment early last fall, and I had follow up labs drawn three months later showing my levels were down. There were a few weeks after my treatment that I felt very tired (a little more tired than my baseline lyme) and I took a protocol of supplements. But my energy returned about a month after the treatment. Treatment involves an infusion IV that takes about an hour. Not a big deal. No other side effects or issues.

[Anonymous]

Is this helpful with bartonella? That is our main issue and my child is too young for many of the other treatments. Also how did they check levels?