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Hello friends,
I returned home last night from Ida Grove. It was so wonderful to be able to hug my children and hubby again!
My last three treatments went well. Although my veins weren't as plump and accessible as the first three days, so the butterfly lines were a bit harder to get started. My herxing pattern continued, and my fatigue and hand joint issues became a bit more significant. Dr. S and several nurses all told me that seemed to be very consistent with what is expected.
The day before I left I had my final appointment of the week with Dr. S. (Again, he was so patient and kind; answering all my questions, addressing concerns and just generally being amazingly confident and reassuring!). He told me that my AP will have to be individualized to me and that he can't predict at this time when/how frequently or even if I will need to go back for IV booster treatments. (It's great when a doctor doesn't give you a “one size fits all” treatment) He said to expect continued herxing and to contact him if things get worse. He is working with me to wean off my plaquenil and methotrexate in a controlled manner as to not cause any trauma to my body. He reassured me that patience would be necessary but that he wholeheartedly believed in this treatment. He inspires confidence.
Truthfully, as good as it is to be home, it also creates some anxiety. As small as Ida Grove is, and as nervous as I was to start the IV treatments, I felt such a sense of sureness there. Some of the nurses have been doing this protocol with Dr. S for close to 30 years, they see the results. It isn't a matter of “if” or “maybe” to them it just “IS”. They live the difference this treatment makes for so many. They talked about patients coming from all over the U.S. and the world, (Korea, Japan, Europe, etc.) Now that I am home, I have a bit of that “alone, me against the establishment” feeling. I am just trying to remember that they are just a phone call away and that I don't have to navigate this myself. So my message to all of you who were (like I was) trying to do this with just prescription from a reluctant rheumatologist…try as hard as you can to find an AP doctor. There aren't many, but they are there and to have that help makes a world of difference.
I was also able to go to the Delux Motel and speak to the manager. She had no problems letting me read through the notebooks people had left detailing their experiences with DR. S and the IV therapy. She is a gem of a lady. If I have to return in the winter, I would be delighted to stay at the motel. It doesn't look like much from the outside, but the lobby was neat as a pin, and the owners/managers are so kind. Reading the notebooks was very moving. It created a sense of peace confidence…So many people have done/are doing these treatments. Proof of sucess in their testimonials. It also created a sense of anger that the medical/pharmaceutical establishment isn't putting more resources into further studies for AP treatment. It is a shame! Money and profits are definitely a factor in this. If RA only effects 1-2% of the population, yet from that 1-2% of people their top money making drugs for three pharmaceutical companies are RA drugs, there is undoubtedly no incentive for them to push antibiotic therapy! But seeing the volumes of handwritten accounts of people who are trying and being helped by AP…it blows my mind that more isn't being done. I don't care what anyone says about published data and proof… bull$%!t , it is about the almighty dollar. “Research follows the money.” (Dr. S)
Enough of the rant…sorry. As for the next phase of my AP, I will resume my pulsed dosing of Minocin 200mg MWF along with my probiotics and gut protection supplements. Dr. S suggested it will be about 6 weeks before we decided about further IV treatments. So for the next month or so, I will be focusing on the positive, waiting out the herxing and hanging out here on the BB with you all. Again, many thanks to this community for your support, prayers, kindness and shared experiences. I hope I can return the favor!
Slow and steady wins the race!
Amy
DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂
Amy,
Glad you are back home with your family now. I am really glad you went. I totally agreed with you about having a good AP doctor to start us up with AP. That's why we drove over 10 hours and left our kids to seek the treatment from Dr. S. I would do it all over again.
So, you are using pulsing dosage MWF? Dr. S did not tell me when I should have the IV boost treatment. He said let's wait and see.
You may have emotional ups and downs with Herxing, and some doubts about AP. I hope you will hang in tough. Please keep us all posted. JB
[user=439]amyid[/user] wrote:
I hope I can return the favor!
Amy, you did just that! 😀 You just gave so much by describing your experience in Ida Grove, something that others, who may be ambivalent or afraid of starting AP, will be reading with great interest in a search for renewed hope and healing.
Thank you for taking the time out to do this – a priceless gift to many!
Peace, Maz
Hi Amy!!
I just read your entry in the journal at the Delux and got a big smile on my face when I saw your name. 🙂 Then I came here and found this post from you, even better!
We got here to Ida Grove this afternoon and already love this town! We took two days to get here, we could have driven straight through but it would have been very tough on both of us. Very much looking forward to my appt with Dr S tomorrow.
Our room at the Delux is quite comfy and incredibly clean. And we are in the old section, I hear the new section is even better. We'll do just fine here for the week.
Totally agree with you about having an AP doc. That's why we made the trip as well. My rheum doc is very supportive but he does not understand AP completely….. am hoping that once he sees how well I do here he will decide to learn more about it.
Glad you had a good trip and thanks for all of the info you have shared! It has helped me tremendously!
Hi Amy,
Glad you went to see Dr. S. He is really a sweetie! The town is interesting. I stayed at the Deluxe Motel also and was fine with it.
If you need someone a little closer in the future, Dr. W. in Wisconsin Dells might be closer unless you have someone that you are already going to. I had to do the I.V.'s quite often and made the 2 1/2 hr. trip weekly for two years, then took two years off and had to get back another two years as a dental infection put me on the floor.
Things will balance out for you in time. Dr. S. is just a phone call away.
Hugs,
Diane/WI
[user=420]kat[/user] wrote:
We got here to Ida Grove this afternoon and already love this town!
Kat, just wanted to wish you all the very best for your stay in Ida Grove and also for your treatments. Please stay in touch and let us know how you're doing. As I understand it, you're going to be in the hands of one of the very best AP docs in the US! Can't wait to here how it all goes over the course of this coming week and thanks for checking in!!!
Peace, Maz
Hi Amy,
It's great to hear you are safely home from Ida Grove and back with your family !
This post has been so helpful to me, and I expect all the others who are 'going it alone' and need a little confidence boosting now and again.
I especially love this bit about the nurses :
Some of the nurses have been doing this protocol with Dr. S for close to 30 years, they see the results. It isn't a matter of “if” or “maybe” to them it just “IS”. They live the difference this treatment makes for so many. They talked about patients coming from all over the U.S. and the world, (Korea, Japan, Europe, etc.)
Who could have any doubts left after reading that !
God bless,
Katie
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