Home Forums General Discussion a new member needs AP doctors information

Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • #300032
    JBJBJB
    Participant

    Hi

    About a and half year ago, I was diagnosed with MCTD. Within a few months, I got raynaud's. Just last month, doctors found I have developed some lung fibrosis, acid reflux and horse voice. I don?t have any skin involvement yet, but the palm of my hands, bottom of my feet muscles are tight with pain. Doctor said that might be the sign of scleroderma manifestation….

    Yesterday I saw my R-doctor/professor. He told me I was wasting my precious time to seek a doctor who does AP. He worries about the progression of my pulmonary fibrosis which left me with 70-76% lung capacity. He wants to put me on Cytoxan right away, which I really prefer not to.

    I made an appointment to see Dr. S. in Iowa next month. It's about 10 hours drive from where I live. I want to get right start since I have organ involvements. I was told he will put me on IV treatment for 5 days. After that, I will come home.

    If you read this post, please fill me in with what I will expect from him and what I should do after I leave his office. What is possible reaction to the medicine he gives…. hotel, and anything you know I would love to know…..

    #310838
    Todd WI
    Participant

    Hello, 

    I was considering seeing Dr. S a few months back. At the time the old board was still searchable and I compiled a file of posts (below) about Dr. S, Ida Grove, etc.  Hope this helps.

    Todd

    Hi Marianne;
    The BEST thing about the doc in Ida
    is that he is such a kind hearted soul.
    Very few people in this life are that
    sweet. You just don't see it much
    anymore. He is easy going and sweet.
    He reminds me of the some of the monks
    that I used to work with. He appears
    to be very humble and kind. Does it
    get any better then that? He does not
    rush through the appointment. He talks
    about the symptoms and he believes us!
    He believed me. I didn't have to
    prove anything to him.
    Diane
    Hey Dee,
    I went to Ida Grove last March so prices probably haven't changed much. Dr. S's initial consultation was $200+, the 5-day/10 IVs was a little over $2000. My insurance paid all of the lab fees so I never even saw that bill. The two motels are around $50/night. We flew into Omaha, rented a car for the week, and drove about 100 miles to Ida Grove. All told it adds up.
    There is no magic cocktail in the IV–it is 900 mg. Clindamycin. I kept one of the bags so we could duplicate it here if necessary. Do you have a local doctor helping you? If so, Dr. S. is kind enough to do phone consults which could possible save you a trip.
    Hope this helps. If you have any more questions feel free to e-mail me…Kim
     
    Hi,
    I moved this topic up as I am still on the road in Washington state and saw old messages to me. Dr. S wrote me a 'forever' prescription that I get filled whenever I need it. If I should require additional IVs I can go to Ida Grove or, if I'm lucky, can locate someone in my area that will do them. I loved Dr. S so much that if I feel I require another round of IVs I think I'd go to Iowa just to see him again.
    He told me he is checking for mycoplasmas, infections as A Friend wrote, so that he may justify insurance paying for the treatment.
    Now an update: I don't understand this, I know my RA factor was high and I know I have RA. But, I feel so good, compared to how I felt before the IVs. As I said before, I know there are ups and downs but I am SO enjoying this feeling of health that I haven't had for a long time. Don't get me wrong, I hurt. Still! In the am I have to move around a bit before I can bend my fingers but yesterday, suddenly, it dawned on me that they worked (fingers)immediately upon arising!
    This may not work for everyone, this may take me longer to get into a remission than some, this may stop working for me….but, I am taking one day at a time and I have had some darned good days. There is, without a doubt, somethng to Dr. Brown's theories and his work and I hope the medical community gets up to speed with the program.
    Hi,
    I just returned from Ida Grove. You can expect, on the first day, to go to your appointment with Dr. S. He will speak to you and address any and all concerns that you have regarding the therapy and what you can expect. His visit will not be short and will not be rushed. He takes his time.
    After his visit you go across the street to the hospital and, if you have fasted, they'll take your blood for testing. If not, no matter, they'll do it anytime. You won't hear the results for months re Dr. S.
    You will go in the IV room, very comfortable place, nice recliners, TVs,magazines, juices, sodas, water for you in the fridge and the nurses will put the port in your hand. Ask for some rubber gloves to take to cover the IV and enable you to take a shower. They'll provide them for you. The IV will be administered (about 900mg) from a really small bag, very slowly, and takes about 20 min to half an hour. You may then leave and do what you wish but come back in about 8 hours (No less than 6 hrs in between) to get the second dose. You can eat before, after, during..makes no difference at all.
    You will do this for five days for a total of 10 IV administrations. On the next to last day, around there, Dr. S will come into the hospital and speak with you and write you a prescription for PRN which I couldn't believe. When needed, forever, Any pharmacy. Make sure you have enough to get home and if you have to send away he will write a prescription for Ida Grove and one to send.
    I needed as extra prescription and Russ, from the Ida Grove Pharmacy, filled it for me so that my ins would pay. It cost me $9.00, that's all. They really work with you.
    DO NOT contact your ins company. Let Dr. S do it for you. He knows how to bill it and that's for infection, which is what we all believe or we wouldn't be going there for IVs.
    The Deluxe may cost about $50 a night depending on what amenities you have. They have a guest laundry so don't worry about clothes. Everyone I saw was wearing shorts and was very casual. There's a new Motel 6 in town but I don't know the cost of that. There's a park called COBB PARK, which is a campground, and, if you have a camper this park charges a mere $60.00 a week, a really low price. It has hot showers ad a nice bathroom, no reservations needed and maybe a mile or so from the hospital. Run by the Veterans of Ida Grove, Nice people.
    There isn't a big selection for food. Shiela's is an ok place for lunch, burgers etc. The Family Table is also okay and the onion rings are to die for but be warned, I almost did. I ate them and got so sick to my stomach. WAY WAY too greasy but I couldn't resist. Boz Wells next to the Deluxe is the best one but only open for dinner. The Bowling Alley, which has food, is closed all of August I believe.
    If you need any other info you can post here and I'll try to find a library Monday to read the board as I am doing some traveling.
    No one at the hospital or the doctor's office asks for money. You will be billed and if you are unable to pay at once you can pay in increments each month. These people are truly there to help and nothing at all is about money, nothing. How refreshing! The truth is they are so nice that no one would think of not paying people like that.

    #310839
    Cheryl F
    Keymaster

    JB:

    If you send a request to the email address apdoctors@roadback.org, you will receive a listing of doctors in your area.  BUT, if you have the ability to go to Dr. S, that is what I personally would do.  My daughter, 16 at the time, was diagnosed with MCTD, then several months later, when her lung DLCO (capasity) was 61%, she was diagnosed with limited systemic scleroderma.  She was declining rapidly.  She had extreeme raynaud's, one finger ulcer got so bad that it ate into the bone at the tip of her finger.  Her hands were swollen up like sausages, several fingers were contracted from the tightening of the tendons, and she was extremely fatigued.  I asked the Rheumy who DXd her if he would help us use AP, he said, “NO WAY, IT IS A HOAX!”  So we flew to Boston from California.  I was not aware of Dr. S at the time.

    Jessica's testimonial is posted in the Testimonials Section of the RBF website.  To say the least, this treatment is most certainly NOT a waste of time.  Jess is now 18 years old, she is a freshman in college, studying molecular biology (all A's this quarter), and she just completed her first season swimming on her University's NCAA Competitive Swim Team, with many lifetime best times!  How's that for a kid who had 61% DLCO just 19 months ago?  Waste of time? I think not!

    Send your email to apdoctors@roadback.org and we will let you know of the doctors in your area, but, if you are able, keep that appointment with Dr. S.

    Cheryl Ferguson

    #310840
    Kim
    Participant

    Hi and welcome,

    I also live in Indiana and sent you a PM.

    Kim

    #310841
    JBJBJB
    Participant

    This is so wonderful!!! I really appreciated every one's help to fill me in. I now feel your support. I saved all the information! Thank you so very much!

    JB 

     

    #310842
    JBJBJB
    Participant

    Cheryl,

    Currently I have 70%-76% lung capacity left. You mentioned your daughter had 61% lung capacity prior to the AP treatment, now she is in the swim team. It's really awesome. I understand the fibrosis can not be reversed, however, increasing lung capacity is possible. That's very encouraging.

    I pray I could improve my lung capacity to 80 or 85% range after AP treatment. I do have short of breathe and also starting to have “mild pulmonary hypertension” which can be very dangerous. I am worried.

    I am having infection in my lung now and I am taking antibiotics to treat it right now. JB

     

    #310843
    Cheryl F
    Keymaster

    JB,

    I wouldn't say that the fibrosis cannot be reversed, I think that the body can indeed reverse some fibrosis.  That is just my opinion. The key is to stop the progression as quickly as possible.

    We had a new PFT done a few months after the first one and Jess' DLCO was up to the high 70s (78 I think).  Some scleroderma patients have reported on this board that their CT scams showed improvement.  I am sure that it is quite individual.

    Yes, Jess is on the NCAA Swim Team, her goal was to make it to Nationals which she didn't quite do, but she did very well none the less.  Several doctors have said that they beleive that one of the keys to Jess' quick recovery was that she kept moving as much as possible.  Through the worst of it, she went to swim practice everyday, unless she had a doctor appointment.  I suppose that being 16 years old didn't hurt her either.  Jess is the one in the photo of my Avatar on the right, on the left is lil sis Claire.

    I also sent you a Personal Message.

    Cheryl

Viewing 7 posts - 1 through 7 (of 7 total)

The topic ‘ a new member needs AP doctors information’ is closed to new replies.