Please help me.

[Karthik79]

Hello…

My mom is 57 years old. Five years ago, she started drying out, and have alot of rheumatic types of pain. They diagnosed it as systemic lupus. Now they have found out it is Systemic Scleroderma with Raynauds fingers and Sjogrens Syndrome.

Her skin is all darker, and “,leather like”, and like “shrunk”. Her fingertips are always sore, wont heal.
The doctors are worried about her lungs, as it has become worse during the last few months. Now they started putting her on chemotherapy (cell poison), to save her lungs.

She also gets “ilomedin” treatment, (3rd time, she in the hospital right now) which she finds so painful. So far it hasnt helped her, but its supposed to “widen” her arteries to her fingers, so blood gets to it.

She been using Tracleer now for last 4-5 months. I also know she used(or use) Prednizolone and Adelat.

Is there a chance this Antiobiotic Protocol can help my mom? Please give me advice on how to proceed, and what information i can give her doctors. They are doing their best, and one even cried for her, telling her “i wished i could do more, and take over some of your pain from you”.

Please help. If there is a cure for these devilish diseases, or something to give a better life quality, please help. i'd rather she live shorter, but not with this pain – its horrible.

My email is tvivekan@gmail.com. Or you can reply on this thread or send me a message through this site.

Please. Any advice will be appreciated. Thanks.

[mkbeeliever]

[user=1898]Karthik79[/user] wrote:

Is there a chance this Antiobiotic Protocol can help my mom? Please give me advice on how to proceed, and what information i can give her doctors. They are doing their best, and one even cried for her, telling her “i wished i could do more, and take over some of your pain from you”.

Please help. If there is a cure for these devilish diseases, or something to give a better life quality, please help. i'd rather she live shorter, but not with this pain – its horrible.
.

In a word…ABSOLUTELY.  Take it from me.  My mom is 66 years young and sounds so much like your mom.  My mom has been helped by Minocycline.  8 months ago we thought we were going to lose her.  She is now doing amazingly well.  After Christmas we are starting another Antibiotic.  We believe the Scleroderma has stopped progressing.

What I did:

1. Bought Henry Scammell's book on Scleroderma The Proven Therapy That Can Save Your Life.  I read it twice.
2. Joined this forum.  Scoured it – did research on it and on the Road Back Website.
3. Asked my mom's primary doctor to read the book.  He did and he said “let's go for it” and he bought into the theory and protocols surrounding Scleroderma and AP.  He uses this website too.  We work as a team for my mom's care.
4. Had much patience, prayer and perseverance and still do.
5. Stopped believing that most doctors have her best interest at heart and stopped putting them on a pedestal.  My mom has been failed time and time again by her doctors including one of the best Rheumatologists in our County.
6. Did massive amounts of research on this Devil of a disease.  I was obsessed.  I am very knowledgeable (more than some of her specialists.)  We know what we are dealing with when we go in to see them, they know what treatments we will do and what we will not do.  God is in control but we pretty much are not positioned as pushovers or wimps when it comes to seeing doctors anymore.  I go in armed and dangerous.  If a doctor won't work with us, we don't go back.

If you need anything at all from me, please do not hesitate to contact me.  michelle.saxon@att.net.

My prayers are with you and your precious mom.  Blessings,
Michelle
P.S. mom has raynauds and sjorgens too.  No more ulcers on her fingers and sjorgens much better.

[Maz]

Karthik, I wrote a whole long message to you earlier and lost it when it was going out due to a server delay, but Michelle, the angel that she is, replied above and basically said everything I had written and also provided the invaluable personal experience of AP that you needed to hear for your Mom's scleroderma. She is living it with her Mom, as you are with your Mom, so you were definitely meant to hear from Michelle, the earth angel, today! 😀

If we can help with sending you a list of antibiotic protocol (AP) physicians for your neck of the woods, then let us know and we'd be happy to send this to you. Just let us know where you're located. Some people prefer to travel to the “most experienced” on the list, so this may be an option, too, if you live somewhere where there is a shortage of AP docs.

Peace, Maz

[Margaret Mueller]

AP is absolutely your mom's best bet to get well. I am 55, and got sick four and a half years ago. As year ago, I could bearly walk. I started ap in July, and feel pretty close to normal now. Not everyone gets results as fast as I did, and I'm not nearly done yet, but it does work.

Get to the nearest ap doc as fast as you can, and you'll both be amazed at how fast she'll feel better, and just keep getting better. Initially, I thought that treating this horrible disease couldn't possibly be this simple, but it is. Be her advocate, be persistent, learn as much as you can, and ask a ton of questions.

We care. We want to know how your mom's progressing.

[Kim]

Hi Karthik,

I am very sorry your mother is so sick, but welcome to the Roadback forum.  Thanks to this protocol I am in remission from my rapidly progressing case of Scleroderma.

Your best chance of turning this around will be to learn everything you can about the protocol and be ready to stand up to any doctors that get in your way.  The Home section of this board has a lot of information that you can show your doctor.  Ideally, you'll want to start her on Minocin as soon as possible, even if you haven't found the doctor of your dreams yet.  My family doctor was willing to write the scripts for me even though he didn't believe it would work, just because he knew the drug wouldn't hurt me.  Later I traveled to one of the experienced AP doctors.

Scleroderma is a collagen/vascular disease and improving circulation is key to stopping the progression.  Two things happen:  the blood vessels build up with extra collagen allowing for less blood flow which is bad enough, but then the blood becomes thick and sticky making it even harder to flow.  Her Raynaud's is so painful because her circulation is compromised.  If her doctor doesn't have her on blood thinners which can be dangerous, there are things you can do immediately that will help.  I bought an infrared sauna and it used it almost daily which did wonders for my circulation.  There are very effective enzymes on the market that are beneficial in thinning the blood and reducing inflammation.  The one I use is Neprinol.  My Raynaud's is almost totally gone, about 95% better.

This is overwhelming, I know, but you need to educate yourself and assemble a team to make this happen.  Too many of us have wasted precious time waiting for our doctors to help us only to learn they couldn't or wouldn't.  Your job is to find one that will.

Please use the search feature on this site because you will learn so much from other Scleroderma patients that have been in your shoes.

Wishing you and your mother the best in turning around this miserable disease.

Take care……kim

[richie]

Hi-Evidently you are overseas —From the meds your mom is taking she must have a bad case of PAH or other lung problems along with the Raynauds —Ilomedin is not a US drug but its widely available in Europe –the active ingredient is called Iloprost –which has been shown to be helpful in situations like this –I should add that Tracleer —Iloprost and to a certain extent Adalat are being used to address the similar problems associated with scleroderma –NOW for your answer —minocin or minocycline addresses the underlying disease far better than any other course of action —Which means you are attacking the cause of the lung problems –You are not supposed to give up the current meds because they are addressing a nasty by-product of the scleroderma –the minocin or minocycline would address the underlying disease—I would urge you to strongly consider the option of taking the minocin or minocycline —This is the successful approach I used in overcoming the illness —you fight disease on two fronts –# ! using the minocycline or minocin to combat the underlying disease –and using other meds to combat the nasty symptoms associated with scleroderma –This approach was highly successful for me and resulted in complete remission for me –I continue on these meds because I feel this is the most prudent course to prevent relapse and to deal with any permanent damage to blood vessels that certainly occured –Many helpful folks around here will be glad to provide doctor information hopefully reasonably close to you –hope this helps —

richie

[Karthik79]

Hello…

Thank you everybody for taking the time to educate me and giving your care – i really appreciate it.
You have given me new confidence that this illness can be fought – and my mom is very excited about this also.

Today i ordered 4 copies of the book Michelle recommended, so that i can give to the doctors aswell.
I am also glad that this has approach has helped so many of you, and moved that you make an effort into making sure my mom can also have the best chance of having success with this treatment.

We live in Norway, do you know of any AP doctors in Norway or Europe perhaps?

My mom is starting chemotheraphy on the 12th of january, because the doctors are worried about her lungs, as it has become worse in a few months.

Can she be on the Minocin at the same time as she is on chemoteraphy? I think atleast it will be easier to convince a doctor (who is not familiar with AP) to start the AP treatment, if they can treat her paralell to their method.

Again, thank you all for your concern, and information.

Sincerly
Timothy V

[Maz]

[user=1898]Karthik79[/user] wrote:

We live in Norway, do you know of any AP doctors in Norway or Europe perhaps?

My mom is starting chemotheraphy on the 12th of january, because the doctors are worried about her lungs, as it has become worse in a few months.

Hi Timothy,
A couple months ago, I was speaking to an Norwegian ex-pat (living in Toronto, Canada) who had scleroderma around the time that Dr. T. was doing his “Minocycline in Early Diffuse Scleroderma Trials,” and she flew down to see Dr. T to start on minocycline. This was some years ago (maybe 10?) and she has been in remission for the past 7 or 8 years now! She was fortunate and caught her disease early, but there are several others here who are on AP (antibiotic protocol) and were well into their disease process when they began. The earlier one gets started, usually the swifter the turnaround, before too much damage has occured. 

This lady also shared with me that Norway is very unfriendly to any form of treatment outside the conventional path, as she has been trying to find help in your country for another person with scleroderma. 

The nearest physician we have listed to Norway is in Guildford, Surrey, England, which would involve some travel for your Mum. I'd suggest contacting this physician, explaining the situation to him, and asking for his input as to how he could help manage your Mum's scleroderma from over the Channel. He does offer IV clindamycin therapy, which is a bonus, so if your Mum chose this route, then it would likely involve a stay of 5 days for the IV series. Again, though, this is something to discuss with him. I will send you his contact info in a private message. To retrieve it, just go to the top right of this page and click where it will say, “You have 1 new message.”

The chemotherapy you mentioned sounds like what they use over here, called, “Cellcept?” If this is the case, then there are some scleroderma patients who have mentioned using this drug to help with the symptoms of advancing scleroderma, but the goal is to wean off it when improvements start with minocycline. Hopefully, they will chime in when they read this, but you can also use the search box above and type in “Cellcept” to see what past discussion threads have come up. Again, though, this is something you could ask Dr H., the AP doc in England, when you connect with him to ask for his input on this question, as we are just patients here. 😉

Will send the UK doc list now for you now!

Peace, Maz  

[Karthik79]

Hello…

Yes, Norway is a rather strict and conservative country. Especially critic, before trying something “new” before its been tried for 1000's of years :).

I mean, careful is the word, beneficial in many matters, but not in the case where a less known disease is involved, and speed might be required.

I am so glad u mentioned UK, because my mom has cousins there, who are more like siblings then cousins. Its not a far trip, and if the doctors here dont want to co-operate, i know she will even have a home over there. We also have loving family in Canada, so going to the american continent will probably also never become a blockage for us.

Thanks again my friends.

Sincerely
Timothy

[richie]

Hi-That is a wonderful success story –it was about 8 years ago –her father who lived in Norway made initial inquiries and convinced her to see Dr . T –th results were nothing short of spectacular !1

Richie

[Rosey UK]

Hi

And so pleased you found us. As you can see they are the best on here and they never let you down.

You have lots of info and it will take up all your time but you'll get there and will soon know it all.

I too went to see the AP doc in Surrey UK so if I can help please let me know.

I beleive that now you have found the RB and Henry Scammels books, it will give your Mum hope and I think this hope will lift her spirits and take away the fear for her to start her recovery. Thats what I believe anyway.

God Bless you!

Rosemary PS

you can ask them to pray for your Mum's  Healing     http://www.jesuswillhealyou.com/Prayer_Requests.html

[Karthik79]

Hello…

Today i went to the hospital (my moms final day of ilomedin infusion), and i also got to talk to the doctor, to introduce him to AP.

Btw, they are staring Sendoxan chemotheraphy (12 january), which is supposed to kill white blood cells, and hopefully spare my moms lungs.

I felt he was a bit sceptic, because he said Minocin is an older medication, that has been replaced with more effective medications through the years. Its also a drug used in US, not permitted in Norway.
He also said he never heard about using Minocin for Scleroderma/Lupusor any rheunmatic patients (except for ***, which was unsuccessful) in any medical journals or papers, or from a seminar he went to in the US with a top Scleroderma experts.

*** = i dont know the english word, but directly translated it would be something like “Joint-Ache” ? Arthritis perhaps?

He DID say though, he will take a look at the RoadBack Foundation site.

So i want to help him find the gold in the site, so i thought i'd might find some direct links,to help him look.

If AP is documented in medical journals, and thorough documented research/results reports were available, he would certainly look into it. Testimonials wasnt good on its own though.

So can you please direct me to such documentation as what he is asking for. How should i proceed.

I will of course scour the RoadBack site for such, but just in case you knew where the gold nuggets were, for a healthy sceptical doctor.

I believe in AP from everything you've said – and whats ive read on the internet, and i want him to believe in it also.
The books probably wont be here before in early january because of christmas, so havent given him that yet.

Thanks 🙂 And Merry Christmas.

[Maz]

Hi Timothy,

I've done a quick sweep of the main Road Back website and pulled up a few articles and studies for you to get started with. I'd suggest printing out these and doing searches on the actual studies listed below to print…and the placing them in a folder for ease of reading.

It's important to note that minocycline has both immune-modulating and anti-bacterial properties. The immune-modulating properties of the tetracyclines are very powerful in the treatment of scleroderma in terms of collagen inhibition, angiogenesis and other properties listed below. So whether or not a physician believes in infectious causes for scleroderma, the non-antibacterial properties of this class of antibiotics, particularly minocycline, is worth emphasizing.

Also worth emphasizing is that the studies conducted for many drug trials are relatively short term and, in the scheme of things, minocycline therapy is a longterm therapy. There are no overnight cures and it may take a year or two for benefits to actually be seen, especially in more longstanding/severe cases. Disease progression may continue in the early part of treatment, but this does not mean the antibiotic is not working. As you will see from the stories below, it took Richie 4 or 5 years to reach remission. Jessica's scleroderma was caught early, she is young and fit, and her scleroderma turned around within a month or two. Kim, however, had a process of elimination to work through to get to the bottom of her infectious causes for her scleroderma and mixed connective tissue disease. The journey will be unique to each patient.

Another important factor in there being so few actual studies on antibiotics for any rheumatic disease is that the patents on most brand antibiotics have run out and there is no money to be made from such studies. Many of the studies run today on infectious causes for rheumatic disease are carried out by independent researchers, not pharmaceutical companies who have greater interest in newer, more lucrative disease-modifying drugs.

There are two very experienced antibiotic protocols physicians here in the US who often consult with other physicians wanting to learn about the therapy for their patients and who are willing to do whatever it takes to get their sclero patients well again…Dr T in Boston who ran the Minocycline in Early Diffuse Sclero Trials and Dr. S in Iowa, who has treated countless scleroderma patients with oral and IV clindamycin therapy. If your Mum's doctors are willing to consult with these physicians, then we'd be happy to pass along their contact information to you.

Hope the following will help you get something compiled for your Mum's docs, Timothy. You may be able to find more on the main site or in other locations. Pub Med is a good resource for searching out studies:

http://www.ncbi.nlm.nih.gov/pubmed/

All the best in putting your case together for your Mum and please send her our best wishes! Seasons greetings to you and yours!

Maz

 

Minocycline in Early Diffuse Scleroderma SSc – The Next Step – <span style="font-size:2]The Minocycline in Early Diffuse Scleroderma Study published in the November 28, 1998, issue of The Lancet validated minocycline as an effective treatment for scleroderma.[/size%;”>

[/size]
<span style="font-size:2][/size]

https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/67.html

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/113.html

 

Infection with Bacteria as The Cause of Scleroderma

by Alan Cantwell, Jr., M.D.

[Karthik79]

Thanks alot Maz, and to richie, michelle and JBJBJB , and everybody else who has given me advice both on the forum and in private message.

I appreciate your effort and concern.

Sincerely

Timothy

[mkbeeliever]

Maz, you are amazing!  What an Angel you are!
Blessings,
Michelle

[Author]

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