Re: Re: my trip to see Dr. Franco

[Guest guest]

Connie,

It's good to hear from you too. Glad you're doing well. I take Bactrim DS

twice a day along with the Cytoxan. The doctors at Mayo in Rochester (

Utz, M.D. and Clement Michet, M.D.) prescribed it because their tests and

retests confirmed Wegener's Granulomatosis and RP overlap. I had a positive PR3

antigen in relation to a positive c ANKA. This WG/RP overlap is quite rare, I'm

told. Mayo said there are 15 documented cases that they're aware of.

The Bactrim DS is well-tolerated and could be something I take for life. I'm

just hoping the Cytoxan can be lowered. It seems like it took 10 months of

these medications to make a noticible difference. I woke up one day in early

February and felt such a sense of well-being. Hard to describe! And I'm

alternating 5 mg of Pred with 2.5 mg every other day. Hopefully, I get to 2.5

mg and then that old Prednisone is outta here! My PCP asked me how well I was

tolerating the Pred withdrawal pain. I said, " Not too good. " So he prescribed

Ultram to be used sparingly to protect my stomach from ulcers. Now I'm almost

too cautious about taking them. So I take 1 on days I really need to get a lot

done. Lately that means getting the gardens ready for new annuals.

But life is good again and getting better all the time. If the Bactrim DS has

played a role in the improvement of the RP, then I'll certainly ask that they

publish these findings so other doctors will be aware.

As far as supplements and vitamins, I include Flax Oil Capsules with Omega-3

fatty acids made by Barlean's. The skin and hair certainly seem to like it. I

also take a Biotin tablet daily.

I'll let you know how my appointments go when I return from Rochester next

Wednesday. Tests/scans/xrays/etc. begin Monday, 4/22, at 7:00 AM and then I see

doctors in the afternoon and again the next day. I think they will be more than

a little surprised by my improvement.

Take care of yourself and lets keep in touch.

(KC)

Hi ,

Oh it's so good to hear that you are doing well :-) Now you've

piqued my curiosity though. If you don't mind....will you tell me

which antibiotic(s) you are taking? and if your Mayo doctor

prescribed them? I have heard that there are some doctors at Mayo

who will use the antibiotic protocol, but I don't have any names.

As for the seminars...I've bugged my internist a lot to go to the

seminars that are put on by Dr. Trentham and the Road Back

Foundation. They have had two that I know of...but I'll keep

trying :-)

Yes, I will probably be on the antibiotics for life, but that's OK

with me. Don't forget to take a good acidophilus/bifidus every day,

hopefully with non-chlorinated water, but not at the same time as

your antibiotic.

Again, wishing you all that is good,

Connie H

>

> Connie,

>

> I also take an antibiotic daily along with Cytoxan.

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