New to AP but found help! Questions about getting started.

[Vhanson]

I am excited to have found a NP who prescribed me doxycycline at 100mg/MWF along with probiotics on opposite days. She questioned, however, whether a stronger dose or perhaps clindamycin should be given first to initially boost results. I was trying to find a doctor who she could pick up the phone and call to no avail. She was familiar with someone in Arizona but that name is not on the doctor list.

Symptoms started in my index finger and feet. I thought i had gout and plantar fascitis and got treated with no success. In January my fingers turned purple, then white, 2 separate times, then never again. My fingers and wrists had extruciating sharp pains. The pain would move from one part of my body to the next. I now own electric bottle openers and tools to assist. I couldn’t open doors and sometimes crawled to the bathroom just as a couple scenarios of this craziness. I researched the web, found the Paddison Program and began that. A vegan diet requires lots of chopping vegetables. Such a challenge. Vegan did help with extreme sharp pain. I lost 50 lbs down to 115lbs. This has been quite the painful journey. Wrists and ankles especially painful, swollen. Several other areas like Knees, shoulders, neck, jaw have taken their turn in the pain. I believe LDN which I began in August has helped by dwindling extreme pain to wrists and ankles mostly now. Most mornings I still have a painful time getting up from the couch, and carrying things and a zillion other daily activities once taken for granted. I definitely would have had to quit my job if I wasn’t blessed to work from home. At times I typed with one hand… now I’m back to two, although the stiffness and inflammation is still there. I went in for bloodwork to verify suspected arthritis:
March 2022 – SED=61; CRP=2.9; electrolytes normal; AST=45 (slightly elevated)
June 2022 – SED=38; CRP=1.5; RF=112; CCP=187; CBC normal with hgb=13 and WBC=6.0; ANA=negative
August 2022- SED=57; CRP=2.2; Chlamydia Ab Panel=C.Pneumoniae IgG=1:1024 and C.Trachomatis IgG=1:64 (both should be <1:64); Mycoplasma IgG=.68 (should be <=0.09); begin LDN at .5mg. By November and to date I am presently at 4.0 mg LDN.

Dec 2022 – I plan to have bloodwork tested again soon. Now I have a bottle of doxycycline I have desperately trying to find and ready to go but as my NP wondered, should I begin with a dose of Clindamycin or other? Is oral OK? I spoke with Dr. N’s nurse in Michigan where they offer a 2-week program, with intravenous clindamycin daily I believe for that 2 weeks, prolozone injections once/week…then sent home on minocycline and “diflusin” (sp?) for up to a year. It could be different, individualized. This is what I gathered from questions I had with the nurse. They recommend finding someone to intravenously administer clindamycin back home once/month for a year. I was ready to simply begin doxycycline at 100 mg on MWF but want this to work properly so I can get my life back. I am looking for your expertise and your thoughts on how I should proceed. Thank you for ALL your help in advance. I can’t tell you how much it means to me to have this site and all the resources available for us wallowing around in pain looking for the source and solutions to resolve.

RBFV Edit to remove doc’s surname as per forum guidelines. Thank you for understanding.

[Maz]

Hi Vhanson,

Sorry for the delayed response – busy holiday weekend! First, though, should let you know that this is a patient discussion forum, so no experts here, and we can only relate our personal experiences of the therapy with one another.

Sounds like you’re a go-getter type of person and have done magnificently to get your ducks in a row to give yourself the best possible chance for treatment to help. I’m guessing your NP will have recommended a good quality probiotic, too?

The way your RA started sounds very similar to how it began for me and my past infection panel is similar to yours, except that it was an acute case of Lyme disease that got the ball rolling, swift-onset fashion. It was a confusing time as I had two bulls-eye rashes but the initial Lyme test (ELISA) kept returning equivocal and so my PCP was reticent to prescribe treatment. Knowing what I know now, that was a huge life-altering error in judgment as a bulls-eye rash is definitive, regardless of testing.

Do you think your NP might consult with an experienced AP doc on the IV clindamycin? It might save you travel costs and stress. There is an APRN in Iowa who took over from an experienced AP doc who retired a few years ago who might be able to consult in this way. Or, perhaps Dr. N might consult with your NP?

Also, were you given the option to take Minocycline? You may do perfectly well on doxy but Minocycline seems to work faster for many RAers due to its lipid solubility and ability to cross cell walls. This can be very helpful with intracellular infections.

Not everyone has access to IVs and, although others have shared it provided a bit of a jumpstart, it wasn’t necessary for everyone. Many only ever use oral AP and may later add oral clindy if progress is slow.

Hopefully, now the holidays are passed, others with RA can chime in for you.

One last thought, with a history of chlamydia, have you considered the CPn combined antibiotic protocols CAP)?

[Author]

Posts