Hi all
It’s been awhile since I’ve posted an update on myself so I
figured I’d write something. I’ve been reluctant to share, because in truth, I
haven’t made any progress in symptoms and I didn’t want to be discouraging.
I first got a positive (CDC positive, from a hospital lab)
Lyme test January of 2014. The test was done by a neurologist who thought maybe
Lyme was causing my chronic daily headaches. I’d previously been diagnosed with
New Daily Persistent Headache, or NDPH, because I’ve had an unremitting
headache since 2004, which was my freshman year of high school (I'm 24.) I had an ELISA
test run by my primary care doctor sometime around then, and it came up
negative, and nobody ever mentioned Lyme to me again, and I went to 10, 20, neurologists and neurosurgeons and specialists.
The neurologist didn’t know what to do with this positive result
and told me it was probably a false positive and not to worry about it. But it
made sense to me. Lyme disease. That could be causing all my problems!
So I looked into it
and felt confident that this was what I had, and started seeing my LLMD in April
of last year.
She was reluctant to treat me for Lyme, despite the CDC
positive test. Based on my symptoms, she didn’t think I had Lyme. I've managed to live a relatively normal life, my fatigue and pains aren't disabling (which I now think is because my immune system has just suppressed it.)
She ran the
barrage of tests, and though she was concerned, she wasn’t ready to treat for
Lyme. I had a very low CD57 which concerned her, and the new WB from Stony Brook was
not positive, but had a 93 band.
I just didn’t seem like a Lyme patient to her, my headaches
weren’t Lyme like and the C4a levels were normal. So we started by trying acupuncture,
diet changes , IV mineral infusions. No change.
So we started treating for bartonella next with herbs. I was
on A-Bart for awhile with no change. She added A-Myco and it just made me feel
really fatigued. So we stopped that. We tried oral Zithromax and Bactrim (for
bart) for a month. I couldn’t tolerate the Zithromax, I threw it up, but I did
a month of the Bactrim, no change.
I don’t have my notes in front of me, but I think we tried
the Beyond Balance herbals next. I reacted to all of them slightly, so she
decided to run an Igenex test. (I know I know, I should’ve had one run from the
beginning, but that was extra money I didn’t want to spend. And I thought with
positive bands that should’ve been enough.)
The igenex came back in November- extremely positive. Igenex
and CDC positive, lit up everywhere. So she finally felt comfortable to say-
OK, this is Lyme. So we did Bicillin shots (since I am sensitive to Zith and
Doxy) for about 3 months, along with the Cowden protocol for about a month
during this. No change. I definitely herxed, and I wasn’t able to tolerate more
than one of the Bicillin shots a week, and definitely herxed from the samento,
but I just didn’t feel any better at all. Fatigue, muscle and joint pain,
headache still the same.
So she said okay, let me send you to this acupuncturist I know,
who’s really good at diagnostics. He’s on Long Island and he will be able to
identify what it is that is preventing us from getting this. I was convinced it
was a co-infection. And it was, sort of.
So he solved me. He uses muscle & energy testing, and
applied kinesiology for diagnostics—he’s not a doctor, but he’s an
acupuncturist and trained in Chinese medicine. In addition to the Lyme, which
he confirmed, he found a pertussis infection located in my sinus cavities. He
is confident that it is causing my daily headache. He thinks it’s been there my
whole life, since I got the vaccine as an infant. I had a bad reaction to the
vaccine, I slept for two days after getting it, according to my mom. So it’s
been there ever since.
So I’ve been going to see him and getting rife treatments
for the pertussis, and I definitely feel like it’s hitting it as I feel worse
after it. But it’s amazing, we finally figured it out. I have pertussis and
lyme!
My LLMD confirmed the pertussis with a traditional swab lab
test. We also tried ozone IV treatments (it basically cleans your blood of
bacteria with ozone), and that didn’t help, so we are starting IV Zithromax this
week. Not only is that good for Lyme, but it’s the right class of drug to hit
pertussis. Fingers crossed!
Maybe this will provide some of you with hope. It might take a long time, but we can figure it out.
Sarah