Finally got clinical DX a month ago but have been researching to understand it. Two doctors have confirmed it, no names because it’s against protocol… Doctors have been prosecuted and persecuted, etc., for treatment of Lyme with long term antibiotics.
I can however say my friend Melanie knew 1.5 years ago. Or more, I can’t remember.
But it damn sure was NOT an infectious disease doctor, bc they won’t see me. Still haven’t got a clue as to whether I have endocarditis too. But I def have Lyme plus “some” coinfections.
Yes it came from a tick bite at some point, not sure when. Confirmed tick bite in 06 or 07, but hell I played in woods as a kid and growing up. We had parties in the woods as teens lol. Plus If u know me, you know I loved to play in the dirt with my flowers. And Will do it again if I get well. So who knows when I got bit. And it really doesn’t matter now
No I didn’t have a bull’s eye rash. Stats are that 5080% don’t (IDR exact stat right now and am too tired to look it up). I was too busy fighting Mosquitos, bc their bites turned into whelps (sp?)
No, it didn’t come from my dogs lol. I used frontline & then Advantix religiously until retirement. By the time 2011 started, 12411 to be exact. Lyme flared its head and didn’t stop. I just didn’t know it at the time.
Contrary to what u may read if u google, 24 weeks of RX is NOT enough unless it’s right after infection. Contrary to the CDC and the IDSA!!!!!!!!!!!! Believe nothing they say with regards to this.. And probably other stuff too
Technically mine is “latestage” bc (1) I have more than 50 symptoms, much closer to 100 and (2) bc I’ve been sick for longer than a year.
the Lyme bacteria lays dormant in your body, for years sometimes. Stress brings it out (thank u Major).
Since Lyme can attack every part of the body, there’s a possibility it is the reason my LASIK went bad, back in 07 or so. It was stressful back then and I’ll leave it at that. No studies have been done on that.. But a Lyme affects vision and causes vision loss among numerous other “ocular issues”.
2011 it went full force when I became a target at work. What I thought was a nervous breakdown, and maybe was, while caused by illegal actions against me, can also be attributed to Lyme. By this I mean that “Some reactions” to the work stress were not as “appropriate” as some thought they should be, even though I was a hothead lol. They actually weren’t MY normal reactions. I thought it was burnout, even though I loved what I did.
Lyme attacked my back. Then my heart. My vision. My joints. My lack if appetite is due to Lyme. Unless it’s chocolate lol. Lyme loves sugar.. I ate a 5 lb. bag in 2 weeks and still lost weight lol.
It affects everyone differently. I have friends that only have neurological effects. A lot depends on the strain of the bacteria (Borrelia) as well as coinfections.
In addition to the above, I have cognitive effects. Memory. Speech. I can’t add without an adding machine. AT ALL.
It’s made my depression worse: some days it’s like I didn’t take my Lexapro. Same for the ADHD and the way the meds work.
Hell Even my damn handwriting is worse. I could make a list, but I’m tired.
It’s misdiagnosed daily. And there are NO tests that are 100% reliable, particularly since Lyme “hides” and moves in your body.
But “Lyme & company” are out there. it’s real. And it’s NOT “all in your head”. Or in this case, not all in mine.
Yes, I WAS excited. Not happy to have Lyme, but happy to have my Doctor tell me no I wasn’t crazy. .Well, not totally anyway. Yes I still have 3 leaking heart valves. But my cardiologist can’t fix that while I have this in my body.
And I have NO clue if the growth on my aorta that the cardio found was just a shadow or was there. It wasn’t there 9 days later, but could have broken loose. In which case it’s floating around in my body.
The truth is NOT on the CDC or the IDSA websites. I started with www.livinglyme.com and went from there. And haven’t stopped.
“Under Our Skin” is available on YouTube. Worth the time to watch it.
A cousin asked earlier what my treatment was going to cost, bc I still haven’t been approved by social security for disability. (Asses). All I could say is “lots” and “ink”. Treatment protocols vary depending upon symptoms. Coinfections, stage of disease, etc. Genetics affect it too, and I have a MTHRF mutation, as do a large # of “Lymies”. Yes that’s what we call it.. What it looks like. MTHFR.
In a weird way, the researcher in me is totally fascinated. And disgusted. Bc people are dying from it. And the gov’t is fighting over treatment methods. Bc of money and power. As usual.
And I HATE LYME! I have good days, where I feel ok. That’s used loosely. Bad days suck. Royally. And when my body has had enough, it shuts down. Totally. I sleep, sometimes for days. And I’m beginning to learn when it’s coming. When my body is tired, I stop talking. Yes, me lol. Unless I get too hot. Lyme hates hear, and I’ve developed heat intolerance (really sucks as much as I love to be outdoors). When I get too hot, I can talk, I just make NO SENSE at all. Took me 4 times to spell listen the other day. Yeah, ME.
For correct treatment, you have to see what is known as a “Lyme Literate” specialist, whether it be an LLMD, an LLND, an LLNMD, or an LLNP. Hard to find. And most do not take insurance. You pay and then file for reimbursement. have a friend who travels to DC to see hers. But hey, she’s getting better. No the travel expenses aren’t covered either.
Herbal protocols are not covered. Nor the detoxes that are required to keep Ur liver and other organs functioning. HERXING occurs when treatment works.. “Dieoff” of bacteria. Treatment and Herxing are reported to be as bad as chemo.
Hopefully SSD will come in soon and I can get my treatment started. In the meantime I have an 8 week detox ahead of me soon. No caffeine no nicotine no sugar no gluten. Probably nothing else good either lol.
But I can promise you, I WOULD give up a limb if they told me it was needed and would cure me. And I wouldn’t wish it on my worst enemy, even those that are downtown.
And it keeps coming. And it’s not done yet. Some of the few true friends I’ve got paid attention. Read what I sent them. And pointed out symptoms I didn’t know I had. Or had not tied to Lyme. And a few have been diagnosed b/c i was vocal and open about mine.
So if you don’t wanna hear about it – tough shit.
WEB LINKS For more info (and they all have other links as resources):
Lyme Disease “Quick Facts” http://www.ilads.org/lyme/lymequickfacts.php
More Quick Facts http://www.alabamalymedisease.org/fastfacts.html