Is AP Successful in Treating Longstanding Pulmonary Fibrosis

[sjess]

Hi! I am new to AP. I have my first appointment with Dr. S in Ida Grove, Iowa in 2 weeks. I have had MCTD with Pulmonary Fibrosis for over 20 years now. I am wondering if anyone else has had longstanding PF and then had AP treatment with success. I would love to hear your story. Thank you. I would also appreciate any advice with regard to my first appt.

[judy cash]

sjess,

You have found a great site for information, and support.I don't have any information concerning your condition, but Dr.S is my doctor, and he is the BEST, He is so kind and really wants to help his patients. You will love him. I'm sure others will respond to your questions shortly. Best of Luck to You.

Judy

[Parisa]

Hi,

AP helped my husband stop the progression of his pulmonary fibrosis and eventually reverse most of the damage.  He is now able to jog where at one point crossing the room put him out of breath.

Here is a thread I started a while back on things that helped my husband with his lungs.

http://www.rbfbb.org/view_topic.php?id=2868&forum_id=1&highlight=Parisa+and+lungs

[sjess]

Hi Parisa,

Thanks for the information, and how encouraging to hear that your husband had success :D! I really had given up hope until I heard about AP on a support website.

Did he start the supplements (NAC and Neprinol) at the same time he started AP, or did that come later?

Sharon

[sjess]

Hi Judy,

I was wondering how your first appt. with Dr. S went. Did you do IV treatments? Did he put you in the hospital? I am really looking forward to seeing him and am wondering what to expect, like should I go expecting to be put in the hospital right away.

Thanks for responding to my post. It is so good to hear good things about the doctor you are going to see! 😀

Sharon

[Parisa]

Sharon,

He actually started the NAC beforehand.  He started taking Diflucan for a yeast infection and I had read some great things about NAC and added it in about the same time.  He made some progress which his eventually lead me to do some research which lead me to Lyme disease and its treatment.

[Kim]

Hi Sharon and welcome to the Roadback forum.

I've seen Dr. S. and can say you will love him.  He has a good track record of helping the many patients that go to see him.   My guess would be that almost all of his patients will get the series of ten Clindamycin IVs.  There is an infusion room at the hospital and you go there twice a day for five days.  If your veins are in good shape they will put in a hep-loc at the beginning of the series and use that each time, if your veins are not in good shape (like mine) they will use a small butterfly each time for access.

There is just no predicting what your response will be.  Some of the RA people go every 6 months for treatment and will visibly get better during the 5 days.  Some patients will herx and feel worse before they feel better so it's very individual.

It would be a good idea to start now taking a high quality probiotic to build up the good flora in your gut.

Looks like you are an Iowan so you don't need to be warned, it's freezing there!!! :roll-laugh:

Take care and let us know how you do……kim

[judy cash]

Sharon,

Kim pretty much summed it up. I had the 5 days of out patient IV's, twice a day. You will go back and forth from the motel that you are staying. It is such a cute little town, but not much to do ,but watch T.V. and eat….LOL. If you need any more questions , just let us know, we are all here to help each other. Best of Luck to you.

Judy

[Alli]

Hi Sharon,

I had my first visit with Dr. S November 9, 2009.  Everyone is right, he is an extremely compassionate and kind man.  He gave us his undivided attention and time and explained how and why AP Therapy works on us.  I've had PF for many years too and in 2007 was diagnosed with Pulm Hypertension – however I knew things had gotten worse before the diagnosis. 

I received 5 days worth of treatment, 2 each day of Clindamyacin (900 mg).  We went in in the morning and again in the evening.  I had no trouble with the iv being put in and it lasted all week.  The last day it started to get a little tender at the site.  I had no immediate tummy problems, nor have I had anything major since.  I did start a probiotic (I get the refrigerated one at Walgreen).  I do experience tummy sensitivity and discomfort in the mornings, but it subsides usually within an hour.  I am taking 100 mg 2x/day of minocycline. 

I noted changes immediately, I work on the 2nd floor of our building (no elevator) and before AP I would have to stop at the landing and again while climbing the 2nd set of stairs.  The first week back to work I didn't have to that – It was weird, but a great weird.  I was also able to go up our basement stairs at home and breathe without difficulty.  Prior to AP, I would have to go immediately outside to catch some extra air.  My son also noted that my constant wheeze wasn't as noticeable and my mother said I didn't have labored breathing when we spoke.  Like I said in my earlier posts, these are little things but they sure do mean a lot! 

The past 2 weeks I noticed that I have had to stop and rest once in awhile going up my stairs at work and I did have a bit of an irritating wheeze present.  It comes and goes – not sure if this is what some call a “herx”, but if it is, it's tolerable. 

I drink a lot of water (almost a gallon a day) and I think that helps in keeping my veins and skin pumped up and soft.  Not all my skin is soft and pliable, of course.  I have tightening and thickening in my fingers and around my mouth.  However, I've never had any trouble with IV's or my monthly labs.  The drs. at Mayo told me that I needed to decrease my water intake because it's hard on my heart and lungs, and I tried but it's difficult. 

I did start walking on my treadmill, which I hadn't gone near in years.  I started by walking 1/2 mile, which in the beginning took me 25 minutes on speeds of 1.5 to 1.9.  I am now up to 3/4 mile and that took me 25 minutes….so, I?m progressing.  Over the holidays, I got a little lazy.  But, what a good feeling to walk and not have to use my oxygen or grasp for air.  I am on oxygen at night (3.5 liters) and in the past have used it during the day when I felt the need. 

So, although I'm still a newcomer to AP Therapy, I am a true believer that it works.  I feel better now than I have in years and I am positive that the little steps will become gigantic steps.  It's important to remain optimistic and positive about the treatments and your own ability to persevere. 

Take care!

Alli

[sjess]

Thank you all so much for your replies! They are so helpful and encouraging. And yes, it is cold here!

I am getting some great ideas from you. I think I will start on a probiotic and water and get in some mild exercise before my appt.

So, did Dr. S start you on the IV the same day you saw him? He is having me come Monday morning, and I am wondering if he will just start me that day. Is there a shuttle that goes to the hospital from the hotel? (My husband will have to come back home to go to work and I won't have a car–we live about 2 hours away from Ida Grove). I'm just wondering if I should go prepared to stay the week and how I'll get around.

Thank you so much for your help. My head is still spinning thinking I might actually feel better:roll-laugh:!

Sharon

[JBJBJB]

[user=1956]sjess[/user] wrote:

I am getting some great ideas from you. I think I will start on a probiotic and water and get in some mild exercise before my appt.

Sharon,

Please tell Dr. S that I said “Hi” to him. He knows me (JB).

If you will do some mild exercise, be careful. If you have pulmonary hypertension, exercise without oxygen (if your lung function is very low), it could cause some people heart attack. I might overstate it. Perhaps you could google it.

Deep breathing exercise is really good.

JB

 

[Alli]

Sharon,

My appt was at 9:00 Monday morning, after a visit and labs, we got started right away.  I believe I was injected and medicated with my first dose by noon and went back that evening for the 2nd round.  On Thursday, because I felt my body could tolerate it, I had 3 treatments which allowed us to leave Friday morning immediately following my last injection. 

We stayed at the Super 8 Motel (60/night), it's about 2 miles from the hospital (I think).  I'm not sure if either motel has a shuttle.  The Deluxe Motel is a little further out of town, but i think the rates are about the same as Super 8.  The people that live there are all very nice, I'm sure if you call before you go they can help you in arranging some type of transporation.  There is a nice restaurant next to the Super 8, the 3 times we ate there it was very good. 

There isn't a lot to do there, especially with no car.  I took my laptop with me which definately passed time, mostly reading roadback information.  I'm so addicted to this site.  We were wishing we had a portable dvd player and movies, although the motel did offer quite a few channels.  It does get a bit boring – the town has a castle theme, which was kind of eerie when we first arrived (in the wee hours).  As the week went on and we were able to see and read more about the town and how it came about we appreciated the theme. 

It's funny, every store we visited the people would ask us if we were there for treatment – they all seemed to know we were there to see Dr. S.  I found that extremely reassuring. 

My mom went with me but when I go back in May, I know I could go alone.  I felt guilty having my mother with me as she has a very busy life at home.  They are ranchers and we left in the middle of pregnancy testing!!!  I tried to insist that she did not have to come with me and she was adamant that she did.  In the end, I was glad she was there because I wasn't sure of what to expect. 

My husband lives in AZ and our youngest son attends our local community college.  He is usually my protector in his dad's absence but this being his first year in college I didn't want him to miss a week.  My mom is retired from teaching and in between her cows she manages to take care of me too.  It's a little backwards and not how I expected it to be.  But, we do what we have to, right? 

Sorry….but I talk way toooo much.

Good luck Sharon!

Alli

[Eva Holloway]

Hello Sharon,

welcome to RB there are so many helpful people and I have learned so much. I also have interstitial pulmonary fibrosis. I was on several medications before I found out about antibiotics. I am on Minoxin and Biaxin. I started with Biaxin because I had severe sinus infections. Dr. K put me on Minoxin and I alternated this antibiotics during the week. I read about NAC beginning of last year and decided to try it. My last pulmonary function test turned out great so did my ct-scan I think that the NAC helped me get there.I also do some breathing exercise before I go to sleep.

Hope Dr. S can get you a good start. I never went to see him but I have read and heard about him a lot. I see a doctor in Texas that has been doing AP for a very long time. She is very good and you may read her story on the Road Back, she is talking about her mom having RA and wanting penicillin. She is about two hours from my home.

I never had the iv, but since I had already started on one antibiotic Dr. K didn't want to change and trying to get to stop the sinus problem first was the important thing first.

hope you have a safe trip and stay.

Eva:D

Eva Holloway

[Alli]

Sharon, when I stated that I was now able to walk on my treadmill, that is after I started AP treatments.  I had exteme difficulty with exercise, even bathing, prior to.  I agree with JBJB, if you have hypertension, consult with your dr before exercising.

Sorry….Alli

[sjess]

Hi Alli,

Thank you for all your information (btw, I don't think you talk too much!) It is so helpful for me!

Thanks for the concern about my exercising. Thankfully, I do not have pulmonary hypertension. I'm really limited as to what I can do, though. My lung function is around 33% and I have trouble doing anything much. I do have a NuStep (garage sale find), and have been able to do a little on it in the past. I might try doing just a little on it to build up some stamina for the trip. I have trouble bathing and dressing, so I can't do much :?.

Now that you mention the castle theme, I remember drivng through Ida Grove once. That's funny about you being asked if you were there for the treatment. That's small town Iowa for ya–something I have grown to appreciate over time. I'm a city girl but married and moved to the country.

Sharon

 

 

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