AP Therapy for Scleroderma with lung involvement

[rigirig]

Hello everyone. I have scleroderma with lung involvement. I just recently started the cytoxin treatment oral form. I am considering trying the AP Therapy. The success stories I've heard with this has been a lot better than the cytoxin treatment and sounds a lot safer. But I dont know if anyone has had any success with lung involvement. I've read many success stories but didnt come across anyone that had lung involvement. If you had or know of anyone can you please share your the persons experience. And also if you are able to do AP along with taking cytoxin.Thank you.

[Maz]

Hi RigRig,

Very nice to meet you and welcome! Glad you found us here, but so sorry you had to seek us out.

There are many scleroderma folk here on this forum on antibiotic therapy and doing well. If you use the search box above and type in the key words, “lung involvement,” you will find some past discussion threads pop up, like this one:

http://rbfbb.org/view_topic.php?id=1987&forum_id=1&highlight=GayG+lungs

I have RA, so probably not much help in the lung involvement area, but NAC (N-Acetyl cysteine) is a wonderful supplement that is a nice adjunct to antibiotic therapy and helps lung fibrosis and interstitial lung disease. Info here:

http://en.wikipedia.org/wiki/Acetylcysteine

You've found a fantastic place for information and lots of experienced AP users here who can share their experience along your road back.

In the meantime, here are a few recent eBulletins with several scleroderma remission corner stories you can read:

https://www.roadback.org/EmailBlasts/ebulletin_spring09.html

https://www.roadback.org/EmailBlasts/ebulletin_summer09.html

https://www.roadback.org/EmailBlasts/ebulletin_fall09.html

Also, an earlier one that includes a link to a study tying chronic Lyme disease to systemic scleroderma.

https://www.roadback.org/EmailBlasts/ebulletin_fall08.html

There is an experienced AP doctor in New Jersey, Dr W, in Summit Heights, if you're interested in seeing this doc. Let us know and would be happy to send his contact info. He provides both oral and IV therapy.

Am sure others will chime in with more info for you…again, welcome!! 😀

Peace, Maz

PS Also highly recommend reading the Henry Scammell book, “Scleroderma – the therapy that can save your life,” and also all the info under Education on the main site:

http://www.roadback.org

[JBJBJB]

Welcome!

Sorry to hear your diagnosis. I hope you will soon find a lot support from fellow patients who have identical health challenges like you.

First of all, I was told I had MCTD, Lupus, colitis arthritis; later, scleroderma (SD) with lung involvement, at least I was heading for that direction, I was told by a rheumy. He wanted to put me on Cytaxon right away. I read many horrible stories of Cytaxon. I refused. That was how I found this support group. 

I have been on AP since April 2008. It seemed to work slowly, unlike some patients who have very quick good results. Recently I found I have Lyme disease, which may helped to answer a lot of problems. 

I have not progressed much. I hope AP will stop the progression down hill (whatever I got).

JB

 

[mkbeeliever]

Ondre,

Not sure if you saw my reply on the other board or not but here it is:

Hello, my mom has been on AP since June. She was diagnosed with mild Pulmonary Hypertension. She at one point was on 2 liters oxygen. For the past 3 months she has not touched her oxygen. Coincidence? I think not. However, we have not had the tests to confirm that it's any better, symptomatically it appears so. She is waiting for a prescription for Letairis to be approved by her insurance, we're going round and round with them but again, no oxygen usage for 3 plus months. Not sure at this point she'll even try the Letairis if it is approved. 

My mother's kidneys have also failed. She was in the hospital for 15 days back in April. I had her in the ER on Easter Sunday. Her creatinine has been as high as 8. Every month it has slowly dropped – last month's test revealed creatinine at 3.7. Her kidney doctor thinks her kidneys are waking up. We'll do a 24 hour urine this weekend to see if they are recovering. (Not that you asked about kidneys) but I wanted to be a testimony to the fact that my mother is getting better on Antibiotics. She was VERY sick back in April. We did not know she had scleroderma at that point. The docs could not figure out that she had scleroderma until a kidney biopsy was performed and then her primary care doctor did a skin biopsy. Both revealed scleroderma. We started AP in June, slowly working up to the Harvard Protocol. She also takes one Zithromax in the morning and one at night on Thursdays. We thought my mother was going to die. AP has saved her in our and her doctor's opinion. My mom's primary care doctor is the one who prescribes her AP. I stumbled upon the book by Henry Scammell on Amazon, bought it, read it, knew it was how we wanted to treat mom, had her primary care doctor who is a personal friend from church read it and he said “what the heck? Nothing ventured, nothing gained!” She was his first patient to have scleroderma. He now has one more scleroderma patient who I met on this board and referred to mom's doctor. She is on AP also and seeing some results. I can only speak from our experience and I hope my testimony will help you with your decision.

Bless you! Michelle

[rigirig]

Yes Michelle I do remember you. Your post was one of the ones that made me feel like there may be hope. Thats great for your moms that she is doing better, and we have to keep praying that she keeps improving. To everyone else I appreciate you comments. I am looking into all the info that is provided to me. I will keep everyone posted and please keep me updated also. Thank you.

[Kim]

Hi Ondre and welcome to the Roadback forum.  So sorry about your diagnosis.  SD is NOT a good thing to have, but it absolutely can be turned around with a lot of persistence and hard work.

I've been dealing with SD for 5 years and am doing wonderfully well using only antibiotics.  If the antibiotics hadn't worked I would have tried Cellcept or Methotrexate or anything else, but luckily I didn't need to.  The link to my remission story is in my signature line so I won't re-tell it here.  Midway through my treatment I realized I also had Lyme Disease which actually triggered my SD.  Lyme can mimic or cause any disease, and there are a lot of people on this board alone that have either the SD/Lyme combo or RA/Lyme combo.  I see you live in New Jersey which is a hotbed for Lyme so you may want to consider the proper testing to see if that's part of your illness.  If, by chance, you would have Lyme in the mix then AP alone isn't strong enough so it's important to know which way to treat.  You can use the “search” button to read previous posts of the best way to go about getting the right Lyme test at the right lab (Igenex Lab).  Most Lyme testing is worthless so it's important to be tested properly.

Please read the book, Scleroderma the Proven Therapy That Can Save Your Life, by Henry Scammel to understand the rationale behind the protocol.

Wishing you the best in figuring out the treatment that will be the right fit for you.

Let us know if there is anything we can do to help.

Take care……kim

[rigirig]

Thanks Kim. I actually just oredered the book so I am waiting for it to be delivered. I will talk with my doc on my next visit about getting tested for lyme also. Thanks for your input.

[Kim]

Ondre,

Chances are your doctor will be clueless on the proper Lyme testing.  You can call Igenex Labs in California and they will send you the test kit (two vials and forms for you and your doc to fill out.)  If you arrange this ahead of time you'll know it's being done correctly and not a waste of time and money.

Please read the previous threads on Lyme testing which explains all of this in more detail.

Sorry this is so overwhelming. 🙁

Take care…..kim

[mschmidt]

Ondre,

Welcome to Road Back! I'm sorry about your diagnosis but, glad you found us.  I was diagnosed with Scleroderma in 2008, and although I didn't have documented internal organ involvement, I had extensive skin hardening, and could feel that it was moving internally.  My rheumatologist wanted me to start on prednisone immediately, and then enroll in a research study, where they were using Cellcept, Methotrexate and Cytoxin.  I found this website, read the book:  Scleroderma The Proven Therapy That Can Save Your Life by Henry Scammel.  I never went to the intake appointment with the researcher, and I've never looked back.  All I can say is that I never took any of the drugs they wanted me to take, and I've only taken antibiotics…it's been 14 months, and I'm almost in remission. (90% there)  Last year at this time, I honestly thought I was going to die–I was REALLY bad.  This was the only therapy that made sense to me, and I gave it a year to work before I would consider going on any other drug.  Thankfully, I don't have to worry about that anymore.  I have my life back, and am grateful to everyone here because I hate to think of where I'd be had I not found out about such a simple treatment for such a devastating disease.

I also found out that I have Lyme Disease in the mix, and started antibiotics specifically for that shortly after my diagnosis.  I believe this has helped me tremendously in recovering, and I encourage you to get that test (the Igenex test) done to know whether you need to address that as well.  It may seem like we're pushing something here but, please understand that we're giving you this information based on personal experience–no other reason.  There are many people who have Lyme that triggered their RA or SD, and I'm one of those people.  Thank God I found that out earlier than later, and I'm grateful to the people on this board for encouraging me to get the proper testing.

I want to tell you that there is so much HOPE, and I've had the privilege to say this to many people lately, and I'll say it to you as well–you are SO much more than this disease could ever be.  Only you can decide what is the right path for yourself, and either way, you've found a non-judgemental, supportive place, filled with survivors, and many people, just like you.  Read as much as you can because it will empower you, ask as many questions as you need to, and please check back in to let us know how you're doing, or what we can do to help.

Maria

[Eva Holloway]

rigirig,

welcome to this site.

 I have RA and lung involvement, even had an open lung biopsy done, I was a real mess, now I am doing soooo much better. My pulmonary function test is back to normal and even my last ct-scan showed  great improvement. I was for one year on cytoxen (intravenous). after one year I had not improved at all. The AP is lots better for you, so read the book and beliefe it works. I also found taking NAC helps a lot with the lung problem.

Eva:D

Eva Holloway

[mkbeeliever]

[user=2105]rigirig[/user] wrote:

Yes Michelle I do remember you. Your post was one of the ones that made me feel like there may be hope. Thats great for your moms that she is doing better, and we have to keep praying that she keeps improving. To everyone else I appreciate you comments. I am looking into all the info that is provided to me. I will keep everyone posted and please keep me updated also. Thank you.

Oh, good!  I'm glad my post helped give you hope!  It's a great feeling to pay it forward just as those here have done for me!  We will keep praying and we'll most definitely add you to that prayer list!  Remember, you did not find out about AP by mistake.  There's a reason.

[Parisa]

Ondre,

My husband has dermatomyositis with pulmonary fibrosis.  Actually in the beginning they thought he had scleroderma, then undifferentiated mixed connective tissue disease, then the symptoms settled more into the dermatomyositis category.  My point here is that a lot of the symptoms here can overlap.  The lung symptoms began right in the beginning of my husband's illness and the pulmonologist was not very optimistic, he was giving him about 5 years to live.  My husband tried prednisone and Cytoxan and both just made him worse and didn't treat the lungs at all. 

We found out about a year into my husband's illness that he has Lyme disease.  Treating for Lyme disease and especially babesiosis, a co-infection of Lyme, were crucial to his recovery.  We not only stopped the progression of my husband's fibrosis but have reversed most of it.  At one point, crossing a room would get my husband out of breath.  He can now jog at a good pace.  So, yes, lung involvement can be conquered.  My husband tried the Cytoxan because the pulmonologist felt it was his only hope.  However, if you look at the research you find that the results are very poor.  It surprises me that the doctors push the cytoxan for lung issues even though it isn't very successful.

My husband found Zithromax to be very helpful for his lung condition.  NAC (n acetyl cysteine) a supplement was another staple of his treatment. 

Here is a link to a post that I made a while back on the lungs and approaches that have worked for my husband.

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

[Kim]

Ondre,

Phil posted this on another thread and wanted to make sure you caught it too. 🙂

Master Symptom List for CFS, FMS, CMP & Lyme Disease
http://www.anapsid.org/cnd/diagnosis/mastersymptoms.html

kim

[mkbeeliever]

[user=13]Parisa[/user] wrote:

My husband found Zithromax to be very helpful for his lung condition. 

This is very interesting!  That is probably why Dr. S. told me to add Zith for my mom.  Great to hear this!  :roll-laugh:

[Jennifer]

Ondre,

     I have systemic scleroderma and was diagnosed in 4/08 with symptoms starting in 10/07.  I had a CT and MRI at the end of 08/beginning of 09 that showed ground glass and inflammation in my lungs as well as a small fibrosis.  I ran a half marathon in September of 09 and had a CT in 10/09 that showed normal lungs! YAY! No inflammation, no nothing!  I am on Minocin BID and IV Clindy.  I hope this helps!

    It is a long journey on your “road back” but I have faith that this treatment is what helped me get better (especially since I have never been on any kind of cytotoxic drug). 

     Take care

Jennifer

[Author]

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