Update/Questions after new doc visit

[TischSEB]

Hi,

So we have been doing the AP on our own (though SEB's regular PCP) for about a month, but were able to get in to see a doc (who uses AP) on the recommended list from rhuematic.org.
The good things are:
1-He seems to be very familiar w/AP as well as variations (Zithro, Plaquenil) and uses them regularly in his practice for rheumatic conditions. I think he regards AP as a immunomodulation tool, less concerned about mycoplasma infection.
2-He is the first doc after a very long list who will set up routine inflammation monitoring bloodwork.
3-He thought it was possible that the Minocin could have affected the CPK result (which went down for the first time since February) after only being on it for 4 days (this is what I wanted to hear).

The iffy things:
1. He still recommends using immunosuppression (Immuran, MTX) in conjunction with the AP, and doesn't seem to think this is a problem. He has many patients on both Minocin and methotrexate. I seem to recall from this board that it is strongly suggested that MTX be washed out before starting AP.
The only way I can possibly justify this in my head is in the interest of preventing muscle damage b/c we have been told that severely damaged muscle can be permanent or only minimally recovered.

2. I didn't feel that a clear and extensive history was taken. I guess I am just venting here. So often we leave an appointment feeling like we have taken up their time, and that they were on their way to somewhere else when we so rudely interrupted with out appt! Maybe this is unfair to judge, b/c we have had doctors take wonderful, extensive histories and then tell us there is nothing they can do.

Well, time will tell – he did order a rather comprehensive blood workup including myco and tick infection tests, so I am keeping my fingers crossed.

TKs for listening. Any encouragement not to use immunosuppression is welcomed (I need help making this case to SEB, who sometimes just wants the quickest relief).

Tisch

[Maz]

[user=1536]Tisch&SEB[/user] wrote:

Well, time will tell – he did order a rather comprehensive blood workup including myco and tick infection tests, so I am keeping my fingers crossed.

Any encouragement not to use immunosuppression is welcomed (I need help making this case to SEB, who sometimes just wants the quickest relief).

Tisch, did SEB see Dr W in NJ? If so, I have heard similar stories from others who have seen this doc, but he is a very experienced rheumatologist. This is just my personal opinion and others may feel differently, but perhaps it really doesn't matter what this doc believes, but the fact that he will use antibiotics (and oral combos) and IVs for his patients upon request. For some, it's important to continue taking the more conventionally used rheumatic meds for a while, so he would be ideal to monitor things in these types of situations.

The goal of AP, however, is to ultimately wean off the immunosuppressive meds. To withdraw them suddenly after one has been on them awhile could cause a really nasty case of drug-rebound, which would be counterproductive to AP, anyway, with a sudden increase in inflamm. So, ideally, if one is on these other drugs, it's better to stay on them until everything has stabilized and then to begin the gradual weaning process…which takes a lot of time and patience.

The thing about Dr. Brown's patients (in the context of the book) is that many of them came to him with longstanding disease, after failing other conventionally-used medications, and they had run out of options – not all, I'm sure, but many. As described in the book, these folk were suffering serious side-effects from drugs such as methotrexate or gold, so there was little choice but to withdraw these meds, which in Brown's view were likely causing more harm than good. Not forgetting that when you went to Brown's arthritis clinic, it was an in-patient experience, so he was on hand to monitor and control things while there for IV therapy. Unfortunately, without Dr Brown and his successor around, none of us has this luxury today.

The only thing I'd question from what you've written is the testing he's running for mycos and Lyme. Is he using standard testing or specialised labs? Seb might get lucky and test positive on standard testing. If not, and he pursues IGeneX testing for Lyme and tests positive on any of the more significant Western Blot bands, your questions may well be answered, as a Lyme Literate physician would probably be a more appropriate choice of doc in the long haul.

Hopes this helps?

Peace, Maz

[TischSEB]

Hi Maz,

Thanks so much for writing back. Yes – we went to Dr. W. So far in SEB's case, we have been able to avoid the low dose chemos/immunosuppressors (Imuran, Mtx), and we embarked on AP with the idea that we could skirt them altogether with this approach. So I was a little alarmed when they were brought up as treatment options in this appt. I was happy that he brought up Zithro and Plaquenil as things to add to the AP, as I have been reading about these on the board, but did not know how we might incorporate them. His main concern was that the CPKs are persistently high in spite of the IVIG/prednisone, and he would use whatever means necessary to get them under control.

With regard to my complaint about the history – I may have been a little harsh. I realized after I had posted that he had given us a copy of his notes from the appt (that never happens), and once I reviewed them, I was a little more satisfied with the level of attention and saw that he had noted the prior positive myco test as significant. We are still pursing the Igenex test. Anything that comes up with other labs will just be gravy.

Tisch

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