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Background: diagnosed w/RA 5/12: rapid onset- totally immobilized & crying out w/pain (RF originally 2443). After a year on mino: RF came back 1722 this time; anti CCP>250, SED rate 25. This is my 3rd rheumy/internist- none of them know about AP; but last two reluctantly prescribed minocycline 200 mg./day, w/standard mtx & plaq. I contacted Dr. S/Iowa: He recommends IV clindy but I can’t find an AP or any MD in NJ to administer them.
How relative are blood tests which give positive values for IGg but not for IGm? I tested positive for myc pneumonia/IgG 211
IGm negative; does the infection have to be current to be relative to RA diagnosis & treatment? Also was exposed to parrots
but not tested for chlam pist. Negative for lyme. Are positive values of past infections/IGg relative to RA? Or must the infection be present/current for IV treatment?About the IVs: perhaps you could inquire with Dr. S about traveling to Iowa and your insurance coverage plus other expenses.
And, inquire about options for handling IVs long distance, at home. Can arrangements be made for a home health RN to come in?
I’m sure others will chime in with their experience.
About testing for infections: seems everyone proceeds differently, but I had my initial round of testing done thru The Arthritis Research Center (TARCI). I was tested for strep. Four strains of mycoplasma, mycoplasma by PCR, and two strains of chlamydia.
I also had a GI panel/stool sample run, testing for fungal overgrowths.The Historical Protocol discusses the importance of screening for strep stealth infections, as taking care of the strep will improve the response to AP.
I have never had a Lyme panel done, although I have pulled off my fair share of wood ticks in my lifetime.
Good luck!
TY M. for the info & reply. What type of doctor are you seeing to do these tests & treatment, Rxs?
I have also been to 2 infectious disease specialists, but they did not do the tests you described except for myc pneu.
The rheumies have not ordered the infectious disease tests you described, either!@needhelp wrote:
TY M. for the info & reply. What type of doctor are you seeing to do these tests & treatment, Rxs?
I have also been to 2 infectious disease specialists, but they did not do the tests you described except for myc pneu.
The rheumies have not ordered the infectious disease tests you described, either!It’s a complicated answer. Shortly after my initial flare, I saw an alternative practitioner in Chicago who had a reputation for being somewhat cooperative and open to patient suggestions.
I had already read Scammell’s book TNAB and I had heard about AP & The Arthritis Research Center (TARCI) from an online health group/message board.
I went to see the doctor in Chicago, hoping to convince him to order the test from TARCI and then write a prescription for Doxy. I made it as easy for him as possible. I offered to order the kit, he just needed to sign off on it, and I’d go to LabCorp to get the blood drawn and send it out. He agreed.
My results came back, and that was enough, along with my symptoms, for him to agree to write the prescription for Doxy. Based on some reading and input from that message board, I decided to start low & slow. 50 mg Doxy on MWF.
A few months later, I had a resurgence of pain, with some concerning numbness in my hands and wrists. I went back down to the city to see the same doctor and ask for his opinion. I didn’t know if it was just herxing and I should ride it out, or if I should raise the dose, and if so, by how much. I was anxious and afraid I wouldn’t be able to put the disease into remission.
The doctor lobbied for me to switch to the Stratton or Wheldon protocol, or to try homeopathy. It was my feeling at the time that if I didn’t take his advice, he wasn’t going to help me. I had to pay out of pocket to see him too ($10K deductible), and each office visit was very expensive. I decided to look elsewhere, and in the meantime, I raised my dose to 100 mg Doxy on MWF.
I got busy thinking about other options, and ended up traveling (10 hours by car, on icy roads!) to see an experienced AP doctor. Again, my TARCI results and symptoms were enough to secure my prescription. We decided against IVs for the moment, but kept them in mind in case I did not respond to the Doxy. I am SO glad I went. It was one of the best decisions I’ve made. The surprising part was the great relief and peace of mind it brought. It’s as if I didn’t realize how worried & afraid I was until I wasn’t feeling that way any longer.
Since I did not have a local doctor willing to help me, and finances were a hurdle, I self-ordered routine testing online. CBCs, CMP, Ferritin, etc. I probably did not test as often, or as comprehensively as I “should” have, but it was the best I could do.
Over time, all those markers that were red, flagged, and “out of range”, began to come in range.I was lucky, and I responded relatively quickly to the Doxy. I’ve been at 200 mg MWF since 2011 and doing well. My prescription is renewed, long distance. I’ve never seen a rheumatologist.
Recently, I’ve noticed mild, increased discomfort in my joints. I self-ordered some routine tests and everything looked great. Nevertheless, my long distance AP MD recommended adding in Azithromycin at 250 mg on Tu and Sat, and staying on 200 mg Doxy MWF. It’s helping.
With our new health insurance plan, office visits are only $25, so I decided this month to introduce myself to our new primary care physician. I told him my story and my concern that one day, I was going to need someone locally to write my antibiotic prescription. I was very surprised at how carefully he listened, asked questions, and said he was open to continuing my prescription when the time comes.
For me, the infection testing primarily served to green light the Doxy prescription. I wanted to rule out strep, of course, because that’s important and requires a different antibiotic. Initially, I never even had any standard arthritis testing done.
Again, not saying that’s “right”, I was just playing the cards I was dealt.
Hope that helps. Tried to keep it short!
Thx again, M. I learned so much from reading your post! You are very well-informed on this long “road back” of diagnosis & AP treatment. TY!
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