My story begins in late 2016 with mild sciatic pain (left leg). I did not go to the doctor for this as it had come and gone for at least 20 years. (I also had other symptoms that I’ve ignored/just lived with my whole life.) But this time it was different with the pain rapidly progressing until I was pretty much bent over and could not walk, sit or turn in bed. I was also very, very stiff. I still refused to go to the doctor (even with great insurance) as I had not had much luck in getting clear diagnoses and logical treatments for other medical issues.
It was interesting to me and important to note that anti-inflammatories did NOT help with this terrible pain. Nothing seemed to mitigate the pain, and I still didn’t go to doctor (I was pretty sure they would prescribe some heavier duty pain meds as well as Prednisone---which I did not want to start).
I started and stuck to physical therapy because it seemed somewhat helpful without getting me hooked on meds that were not clearly linked to a clear diagnosis. I did get some (minor) relief from the exercises and the “dry needling” therapies they used.
But I needed to resolve this terrible pain more definitively because I was due to go on a once-and-lifetime trip to Africa with my extended family in May 2017. Lots of walking and climbing...
While my sciatica gradually improved over the next five months, I was never clear of the pain, and was worried I might have to just skip the trip.
About a month before going to Africa, we all went to get our Malaria prophylaxis, and I chose to do Doxycycline---even though I would have to take it every day for many weeks. The alternative was a malaria drug that I had had a bad reaction to many years previously. Doxycycline seemed well-tolerated even if it was much longer term.
From the very first dose, I was almost pain-free. I didn’t put it together at first, but after a very long flight and a few days in country (constantly taking the Doxy) and climbing in and out of tall vehicles, I knew something spectacular had happened. NO PAIN with Doxycycline. It was clear to me that I would have to research and investigate further when I returned home, and buy some more Doxycycline.
After much research/reading, I surmised I might indeed have an INFECTION of some sort, and that infection had provoked several autoimmune diseases for which I had had symptoms most of my life:
--hardened/thickened/darkened skin largely on thighs and forearms (thighs implicated since puberty)
--mild Raynaud’s as a child and young adult…
--fingers stiff/puffy since giving birth 20 years ago
--acceleration of collagen accumulation after each successive infection as an adult
--very stiff torso most of my life (evaluated by physical therapists)
--pain deep in buttocks and down legs (intermittent, almost always going away upon rising and moving throughout the day)
--pain/stiffness starting at bedtime and almost immediately mitigated after getting up in morning and moving around
So, I might have two autoimmune disorders provoked out of dormancy (genetic propensity?) by a C. pneumoniae infection???
I am in line to see a Rheumatologist for both these autoimmune disorders: to run tests and get x-rays and possibly an MRI. Treatments for these autoimmune disorders seem largely immunosuppressant --this is the opposite of what I want to do. I want to heal my immune system not suppress it, and I think the C.A.P. will do just this.
And so, I started the C.A.P. in earnest on January 4, 2019. I took all of December 2018 to slowly titrate up with Doxy and Roxithromycin. Jan. 4th, 2019 was my first full day of these two antibiotics (two doses of each a day). No negative responses to either. Some positive responses: a softening of hard skin on both forearms/thighs. And almost no pain at night … but still stiffness…
As I write this, I am on Day #53 of the Doxy + Roxi. I am staying on these two for the recommended three months before starting pulsing with Tinidazole (I am not starting with Metronidazole as I want to avoid as many unpleasant reactions as possible).
To keep my gut healthy while on all these antibiotics, I take:
--Slippery Elm (herb/capsule)
--Marshmallow Root (herb/capsule)
Additionally, I work hard to protect my liver, by taking:
--Taurosodeoxycholic Acid (TUDCA)
--Milk Thistle Extract (Herb Pharm)
The Recommended Supplements: I have been on all of these for quite a few years (including N-A-C) before ever coming across the Cpnhelp site.
Finally, I am deeply grateful for all the people who the people who founded, maintain and participate on this site. You have given me much hope that I can regain and keep my robust good health.