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?

Nata. 

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 (+).

Comments

arthritic,  Steve and I

arthritic,  Steve and I just had a very similar adventure with a local doctor in the past few months.  He never seemed prepared, seemed to be in the business of maximizing office visits without actually getting down to business.  We never got out of him what we wanted, but we did get an Igenex Western Blot Assay for Lyme and a stop-gap rx for Nystatin.  Then it came down to what he wanted to do about the Lyme...we disagreed and now he's history.  Your doc sounds like the same type---I'd cut him loose as quick as you can locate a good one.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Thanks, Joyce, I see the

Thanks, Joyce, I see the parallel. This is what my hubby also said that I should find a new dr and I have a couple of drs on my mind in the area. I am preparing to have another discussion with this dr next appt, will see if he still insist on switching abxi.

Nata. 

Arthritis, muscle pain & twitching, sinusitis, hypertensioni, hypoT, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+), ANA (+), BB (Lyme) Western Blot (+).

Full CAPi since 02/29/08: RIF 600mg + Azith 300 mg/3 x wk. 

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Sounds like, while you try

Sounds like, while you try to bring him around, you should be shopping for a prescribing doctor, just in case. Is their practice limited to Lyme disease? In my case, just before finding a prescribing doctor, I had already ordered all of the meds on the internet and was prepared to start, regardless. When I forgot to order a refill in time, months later, I had my little 'stash' of internet meds and used those in a pinch.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Thanks, MacK. I just looked

Thanks, MacK. I just looked thru my meds and Rx that I haven't filled yet. I have a 2 mns supply of extra abxi which is good in case I have to look for a new dr.

I am thinking of a new approach to my dr, may be telling him about what expectations I have in regards of long term treatment startegy.

The exact idea hasn't formed in my head yet but I have 4 weeks to think about it. But it is obvious to me that I can't have "hanging in the air" kind of feeling b/c it makes me so nervous. 

Nata. 

Arthritis, muscle pain & twitching, sinusitis, hypertensioni, hypoT, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+), ANA (+), BB (Lyme) Western Blot (+).

Full CAPi since 02/29/08: RIF 600mg + Azith 300 mg/3 x wk. 

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Nata, Have you read the

Nata, Have you read the Letter to Doctors we have on the site? Michele usually sends a link to it when she sends doctor information to new members. The letter is a good place to start when trying to convince a doctor to prescribe, but in your case it sounds more like you need to use David Wheldoni's paper explaining the life phases of cpni and why three abxi are needed.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

No, I don't think I read

No, I don't think I read that Letter, thanks for pointing out. I've been  bringing Wheldon's protocol to my dr for every appt and last time I asked him directly if he would have a few minutes to look at it and he didn't take it saying that he would have no time.

My appts are strange. The first one was great, I loved this dr on 1st appt b/c he seemed to understand my suffering and gave me CAPi and said he treats patients by the sxi even if their labs are negative (I didn't realize then he meant Lyme negative and Lyme sx and Lyme tx).

On a 2nd appt he didn't understand my reactions to meds and didn't like the slow approach I ended up doing. He still don't understand but refuses to look into Cpni connection to my symptoms and abxi reactions. So, on appts he runs thru the motions and throws at me a couple of supps that I could be taking (and of course are sold at his office).

On 3rd appt he brought up amoxicilin for the 1st time but didn't insist on it b/c he ordered Western Blot confirmation test then.

And on a 4th appt our misunderstanding of each other widened up, him and I were totally on a different page b/c confirmation came in positive, he is talking Lme only now and I am struggling  to hold on to my Cpn CAP and open his eyes on Cpn.

On next appt I am going to say that I'd like to discuss Cpn and how it contributes to my sickness (on his opinion it's primarily Lyme that makes me ill) and how it can be addressed by choosing abxi that affect both, BB and Cpn. I cross my fingers it works, otherwise I hit the road and God knows I don't want to do it. You are never guaranteed what new dr will want to do. Also, new dr will want to run a million of new tests and my pockets are limited in resources.

Nata. 

Arthritis, muscle pain & twitching, sinusitis, hypertensioni, hypoT, restless legs, chronic cough, fatigue. Cpn IgGi (+), CMV IgG (+), HLA B27 (+), ANA (+), BB (Lyme) Western Blot (+).

Full CAP since 02/29/08: RIF 600mg + Azith 300 mg/3 x wk. 

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/