Concerned with the future fate of my CAP
I went to see my Lyme dr for a monthly appt. and came back home all disturbed and worried. This was my 4th appt with this dr and I am still in the beginning phase of the CAPi tx. By this time my dr and I should be developing a working relationship but it's not happening. During appt he asked - Remind me, how long have you been sick? So I told him my story again very briefly. As I mentioned that I saw rheum dr before finding him, he asked - And Rheum didn't find anyhting? That surprised me completely b/c on my 1st appt with this dr I brought to him consult notes from the rheum dr stating the dxi and plan of tx (not CAP, of course but prednisolone & Sulfasalazine). I felt he didn't remember my case at all.
I understand that back in Nov-Dec his group practice started to use new software and they still fine-tune all the procedures as they explore what this software can do. Every time I come in they have something new they want me to fill. Now they gave me a "patient handbk" that I'll be filling everytime I come in to track down my improvement. Not a bad idea, in fact I have an excel chart at home that I use for the same reason.
The problem with my dr's chart that it all about Lyme sxi and has nothing to do with my individual sx that is due to CPni. The dr is looking for "spacing out & walking on clouds" episodes, blurry vision, crawling feeling, frontal headache, tingling and numbness, dissiness and he is gong to grade those type of sx every appt.
My sx are joint pain, bursitis, tendonitis, heavy/tired/painful muscles, chronic dry cough, sinusitis, fatigue & brain fog(both have been dramatically improving since star of CAP). These sx aren't in his handbk so how are my improvements are going to be recorded?
Every appt he talks only about Lyme and when I bring up Cpn, he would make remarks like Cpn is easily treatable, you probably don't have it. This time he said to me that sinusitis and cough have nothing to do with Lyme, talk with your PCP about it. That's the point that they have everything to do with Cpn and I came to him to get CAP for Cpn, instead he is trying to push me in Lyme direction only.
I tried to leave with him Drs wheldon/stratton protocolsi and other print outs with studies about persistencei of C. species, also Dr.Stratton info but hopeless so far. He doesn't want to take a look and politely told me he wouldn't have time.
On previous appts I thought it's Ok that he is diagnosing me with Lyme as long as I get my CAp rx but this time he scared me saying that may be 3 months into tx he would change my Rx from Rifampin/ Azith to Azith/Amoxicillini b/c Rifampin is not effective on Borrelia. He completely ignoring that I made a tremendous improvement on Rifampin in a short time.
I made it clear to him that I am happy with the CAP only if it covers both - Lyme and Cpn and for next month he is OK with me staying on Rif but what will happen on next appt? My faith in him just shattered.
Well, I probably rambled enough here. Thank you for letting me vent here and get it out of my chest. I feel a bit betrayed b/c before I even made my 1st appt with this dr (and on my 1st appt as well) I had a chance to speak with him on the phone 5 min. and stated that I am looking for CAP for Cpn and described the CAP and now, 3 mns later and $2K me lighter, I feel he is putting the screws in to go in the direction he wants. I am also wondering if he is displeased with me b/c I am not buying my supplementsi there and herbs that he recommends?
Arthritis, muscle pain & twitching, sinusitis, hypertensioni, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGii (+), CMV IgG (+), HLA B27 (+), ANA (+), Lyme Western Blot (+), Western Blot confirmation (+).