Dr. "S" in Iowa

[tish]

hello susan, i didn't know the protocol for ap for sd was 200mg minocin daily, is that without iv's or does that include iv's also.   please let me know, as i have just started ap again.

 

[tish]

hey jb,

was just wondering if you're acid reflux is real bad, mine is terrible right now, but i really think it's more from my sd.  do you take nexium.  oh my the way, i hope all goes well with dr. s.  i was there  several years ago, yes dr. s is a great guy. 

[JBJBJB]

Hello, Susan,

Thanks for encouraging me to take care of myself. For years, I have been taking care of others, not myself. I am still not accepting I am having this health challenge because just two years ago I was as health as a horse.

Yes, I have been taking Vitalzym. For this week only I did not take much of supplements at all, fearing to make my treatment more complicated. I had C. Diff two years ago and hospitalized for 14 days and 50% of my colon was severely infected. This Clindy treatment really worried me. I e-mailed the doctor, his reply was comforting. So far I am doing well. I take probiotics twice a day.

I went to ER to get my first daily treatment this morning at 5:30 AM, and I will get my second treatment before 12:00 noon. After that, I am going to hit the road back.

I don't have any big herx. At least not yet. I may start to have flu. I don't know if it's due to cold weather (32F) or it's a herx effect. My fingers are still swelling but I noticed it is not as terrible as I used to. May be, it's just my imagination. My ribs are feeling okay today. My mind does not feel very cloudy like I used to. Perhaps this is a sign of improvement??? However, I spent a lot of time resting. There are many variables, it's hard to pin point if I have any improvement by now.

I have been under a good control with 400 mg plaquenil. My ESR was 26 two weeks ago, and now it's 25. Still a little high but it's better than 89 six months ago. So I don't experience a lot of pain… I will see how this AP treatment will improve. Perhaps I can see it from my future test results???

Terri,

Thanks so much for your prayers for me every day. I pray for you and hope your doctor's visit will be a successful one. You are in my thoughts all the time.

Tish,

I have acid reflux. I read a research paper, saying acid reflux could also cause lung fibrosis. One researcher did a control study, giving patients treatment on acid reflux, and the majority of them got a good control of progression in their pulmonary fibrosis within 5 years. My doctor put me on protonix 40 mg per day. I don't think it is very effective. I have a lot of phlegm caused by reflux. I may change it.

Todd,

Glad you still remember what my rheumy told me about doing AP treatment. He said I was wasting my precious time since I have lung involvement. I really hope I will have improvement in a short term so that my story will encourage others to seek AP treatment.

Lori,

We did not go to a lot of places. We ate at the next door's family restaurant. My husband, growing up from upstate New York, simply loved the food and ice cream. He brought his “office” with him, and he constantly worked through out the week. In your picture with Dr., who held your orange folder, I also got one :>;)

Last, but not least, the biggest reason I posted the detailed information on my treatment is that when I first came to this board as a newbie, I eagerly searched the information like what I've posted. I put all the pieces together, I made a decision to come up here to seek the treatment. I pray my information will be valuable to you all.

Thanks all for your prayers and encouragement!!! I am on my way to Road Back. I appreciate your continuous prayers for my recovery.

In health, we cheer!

JB

 

 

 

 

[Time_of_my_Life]

JB 🙂 

So glad that your experience in Ida Grove and with Dr. S was a good one.  Dr. S gives us  hope, and with hope comes strength… strength in body, spirit and mind.  I believe our minds are a very powerful tool in helping our bodies to heal.  With each step you take from now on, you will grow stronger!  There may be challenges and obstacles along the way but with our new found hope that Dr. S has given us with AP we will overcome.

Thank you for sharing your experience in Ida Grove with others on the site.  Knowledge is power and comfort in the unknown.   You have and will continue to help many in understanding what that first week of IV's for the start of AP is all about.

I pray that you continue to heal.  I pray that your trip back home goes safely.  Here in South Dakota we had over a foot of snow overnight! The most snow we have had all season.  Crazy and  unpredictable weather we have here in the midwest!

In health, we most certainly do cheer! 

Lori

[JBJBJB]

[user=212]Time_of_my_Life[/user] wrote:

Dr. S gives us  hope, and with hope comes strength… strength in body, spirit and mind.

Lori,

Very well said. How true it is!!! I praise the Lord for helping me to find this Roadback Foundation, and this wonderful doctor who gave me the treatment.

We got home around 11:30 PM last night. This morning, we got the kids back and also I picked up my prescription from CVS. For 60 generic Minocin, I paid a little over $50. I took my first one. So I am officially on AP now!!!

One thing I noticed on our way back is that I can yawn now. Prior to the treatment, I could not do it without the pain on my trachea, which was very tight. I also coughed a lot each time when I yawned. Yesterday on our way home, I was so surprised there wasn't any pain, and I did not cough at all. It was very natural like I used to do 6 months ago. I hope this will last long.

I am posting some pictures here. I will remove them later in order to save space.

 

 

 

[JBJBJB]

 

[Terri9967]

JB

Awesome idea to do the link to the pictures!!!  I am so happy for you!!  And to be able to yawn….WOW!!!  Congrats!!  I am hoping for good results Wed when I go to SD specialist!

Thank you so much for keeping us posted on how you were doing.

 

Hugsss n Prayers

Terri

[Kim]

Great post, JB!  So happy that you are seeing improvements this rapidly and willing to share your experience with others.

Terri, do hope your upcoming appointment leads to a similar story.  Just remember that people can and do respond differently to treatments, so it's ultimately up to each individual to figure out what is working best and to find a doctor with some flexibility that is willing to partner with you.   

All the best…..kim 

[Michele]

JB,

You are probably done by now!!! Hurray!! I hope you have a safe trip back home to Indiana. I have made that 10 hour drive many times. (Joe's Crab Shack in IL is a must stop for us!) Do rest and take care of yourself with special hugs to your daughter. I was so glad to hear it wasn't a broken bone!

I also had the rib cage pain and breathing discomfort that you are mentioning. It's frightening but is a herx. Hang in there. Pamper yourself these coming weeks.

Take care,
Michele

[JBJBJB]

[user=50]Michele[/user] wrote:

I also had the rib cage pain and breathing discomfort that you are mentioning. It's frightening but is a herx.

Today is my second day on Minocin. I woke up with a bad pain on both my shoulder joints. It feels like my shoulders are (mild) dislocated. I can hardly lift my arms. I also have running nose and headaches. I am hoping this is one of mentioned Herx reaction.  

I hope I will be able to tough it out. The pain in my rib cage was gone. I do feel, perhaps it's in my head, that I can breath a little easier. I will test my lung function later today when I am doing some speed walk after work (I work part time).

JB

 

 

[Kim]

SPEED WALK?????  Slow down there, JB.  If you've already worked today that's enough

---

let your body rest up and start eliminating the bugs.  The last thing you want to do is get overly tired right now.  You just got back from Iowa and had the IV series so let it work and save the marathons for later.  Just my opinion…….kim  😉

[daughter-sine sclero]

Hi JB,

Thank you so much for all the wonderful and informative posts about your experience in Iowa with Dr. S.  As you already know, my mom and I are getting ready for our trip to Iowa for the week of 5-12.   The daily readings of your posts and experiences have really helped ease her mind and prepare her for what to expect with the AP treatments and our visit with Dr S.  You stated that you get the IV's every 6 hours, do you do it during the night too?  Also, I thought it was for 5 days, starting on Monday.  When was your last treatment?  Is there any more advice you would like to give us?     

Based on reading your posts, we ordered Vitalzym.   How far in advance did you begin taking it?   What was your dosage? 

Also, are you on a special diet?  My mom has been on the macrobiotic diet for a few months but it has not seemed to make a big improvement.  Do you or anyone else have an opinion on the best diet for SD? 

My mom wanted me to ask if you had tightness in your throat and neck and difficulty swallowing.  I also saw that Dr. S diagnosed you with MCTD.   Did he find this with the testing and how does he diagnose it?  My mom also has organ involvement but we don't know to what extent it is.  So I was wondering how Dr S would be able to tell.  I know that I am asking alot of questions of which I am sure you might not know all of the answers to, but I appreciate any advice or answers you can give us.

Welcome to your ROAD BACK TO RECOVERY!!!!  My mom is joining you very soon. 

Again I want to thank you for all you have done with your daily posts on what to expect in Iowa with Dr S.  You have answered so many of our questions and have really helped us prepare for our journey to Dr S and the ROAD BACK TO RECOVERY!

JB and ALL the Sclero Gang ….. Thank you all….You are the BEST!!!:roll-laugh: Nicole

 

 

 

[JBJBJB]

Our appointment started at 1:00 PM Tuesday. After seeing the doctor, I got my first treatment around 3:30 PM that same afternoon. Then we waited until after 9:30 PM and got my second IV on that day.  

I take 9 Vitalzym per day. But during my treatment, I only took probiotic with extra strength twice a day and 500 mg Vit C.

I am not on any diet. I just pay attention about Alkaline level. That's it. I don't have a lot of sugar and meat in my diet since I grow up, so I have been eating pretty healthy.

Yes, I do have tightness in my throat and my “air pipe”. I felt a little less tension in those area right after I finished my IV treatment. I can yawn easily now without having any pain.

You will need to bring all your recent tests related to the diagnostic (MCTD, RA, SD…). The doctor also run some very basic blood tests on liver and kidney (three tubes) and urine test. This includes micoplasma test. I guess by looking at me, listening to my story, plus all the test results I brought with me, the doctor diagnosed me with MCTD with early sign of SD. This is consistent with my diagnosis my IU doctor gave me. 

If your mom has problem with IV site, revisit my post. Drinking water and keeping arm warm helps. You could also use EMLA (a numb cream) to avoid the pain (I did not use it). Try to avoid IV site infection. I would wash my hands before I leave the IV room to avoid possible germs.

I am glad my messages and all other folks' messages helped you and your mother. I pray you will have a wonderful trip to Ida Grove. We love to hear from you.

[JBJBJB]

Bring some warm jackets. I used to live in Houston when my husband and I went to graduate school at U of H. I remembered when we moved to central Indiana from Houston in mid June, I felt “freezing cold” all the time. You mom may feel the same way.

Once you arrived, I would call the doctor's office to tell them you are there and to confirm your appointment with the doctor.

Type a list of the medicine your mom allergic to, and list of medicine she has been taking.

When the nurse tells you to go to ER to get your first IV, you go to main door to the registration desk first. Make sure to bring your insurance card with you. You will have to register before you start IV.

Please feel free to ask us whenever you have questions.

Safe trip,

JB

 

[Goodwife]

Hi daughter,

regarding your question about diet, my hubby went to a naturopath. doc and was put on an “antiinflammatory” diet – this was prior to even finding out about AP.  The diet is VERY strict, and not easy to follow, but I believe it made a huge difference in speeding up his improvements, and greatly reduced the inflammation at the time.  But I would see someone who can guide you through this diet, if you  choose to go this route.  Good luck to your mother in Ida Grove!

[Author]

Posts