Hi, I'm a newbie

[StacieB]

I'm Stacie. I'm 17 and have had Linear and Morphea Scleroderma since I was 5. I've also been diagnosed with Rheumatoid Arthritis and Chronic Insomnia. I think I've been showing some signs of CREST and Raynaud's as well, though I haven't been tested yet. For the past 13 years I've been on Methotrexate and seeing as the Linear has spread from my ankle and now it's on my face it's pretty obvious it's not working.

So now I'm looking at AP. I'm a complete newbie at this so I would like your help on a few things.

The fact I've only been diagnosed with Localized SD, does that matter?
Christine from Inspire told me SD will be fine with just Minocin, is this always the case?
Is AP always done by IV? I can't swallow pills at all.
Is there an average amount time someone is on AP or will it be a regular thing until I see improvement?

I literally just joined the site so I'm still looking around.

And I'm finding it impossible to find websites that explain AP. Links explaining how AP works with SD would be great too.

And my mom has Lyme so she has some questions too.
“Can you just go to the hospital and do it then come home?”
“Do you have to get a stunt put it?”
She has more questions, and I'm gonna try to convince her to come on this site.

[lynnie_sydney]

Welcome Stacie – what alot you've had to contend with since a very young age. There are many SD people who use this Forum who I'm sure will join in. Actually, this Forum is not a stand-alone one, it is connected to a site that does give lots of information about AP. If you press 'Home' above you can access it or access via  http://www.roadback.org. The Education tab is probably a good place to start. You might also find the FAQ section at http://www.rheumatic.org helpful. Sorry you had to find us Stacie but you are in the right place for wisdom, experience and support. Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Kim]

Hi Stacie, and welcome to the Roadback forum.  I'm so sorry that you've been dealing with health issues most of your life.  Many people have been able to reclaim their lives using this protocol, me included, so there is lots of hope you'll be one too. 😉 

In addition to the Home section Lynnie mentioned, you would be wise to read Scleroderma, The Proven Therapy That Can Change Your Life, by Henry Scammell for a better understanding of the rationale behind the program.

You can read my story of things I've done to get better (link in my signature line).  In it you'll see that Lyme Disease played a big part in my illness, actually inducing the SD.  I had huge improvements on Minocin alone, before I knew I also had Lyme, but it wasn't until I underwent Lyme treatment that I hit remission.  We are finding that almost all of the SD people on this board that plateaued on Minocin, then tested for Lyme, have tested positive for Lyme.  They are treating for Lyme and their SD symptoms are improving.  It is very important to know because AP and Lyme treatment are very different.  AP uses low dose antibiotics and Lyme uses high dose antibiotics and many more different ones.  Lyme treatment absolutely requires an experienced Lyme doctor.

Here is an article linking Morphea/SD to Lyme:  http://www.canlyme.com/morphea08.html

I would strongly urge you to order a Lyme test kit from Igenex Labs in California, http://www.igenex.com, and be tested before starting antibiotic treatment.  You can use the “search” feature and read previous discussions that will walk you through the process and see why this is the only lab that we recommend.

Please tell your mom to log on to this site too.  Lots of Lymies around here getting better, so she'd be in good company.  She may have already read the must-read book for Lyme, Cure Unknown, by Pamela Weintraub, but if not, would be wise to do so.

Glad to have you, Stacie.  Let us know what we can do to help you.

Take care…..kim

[Dan_M]

[user=2564]StacieB[/user] wrote:

The fact I've only been diagnosed with Localized SD, does that matter?
Christine from Inspire told me SD will be fine with  just Minocin, is this always the case?
Is AP always done by IV? I can't swallow pills at all.
Is there an average amount time someone is on AP or will it be a regular thing until I see improvement?

“Can you just go to the hospital and do it then come home?”

Hi, Stacie. I'm very sorry to hear about your diagnoses, but I'm happy you were able to find this site. You've gotten some very good advice already from Lynnie and Kim. Please follow up on their recommendations and it will help you immensely!

My son is 15 so he is close to your age. He was originally diagsnosed with scleroderma, and when systemic sd was ruled out his dx (diagnosis) was morphea. He was later also dx'd with Chronic Lyme.

We are originally from Massachusetts, so I'm wondering what part you of the state are from. We moved down here to Florida in '03.

All of your questions in your first post will best be answered in the other parts of this website that Lynnie and Kim mentioned. But there is so much info to digest, I will try to give you some very short, Reader's-Digest-version answers here.

“The fact I've only been diagnosed with Localized SD, does that matter?” First let me say that for you to describe localized sd as “only”, shows what a gutsy young lady you are, at least to me. I perfectly understand what you mean by “only”, in other words “as opposed to systemic”. But localized sd is a lot for anyone to deal with, let alone someone your age, so I have to be honest and say that I'm impressed with your gutsy attitude. To answer your question, AP has worked on both types of sd, both linear and systemic, and on all of their subtypes: morphea, linear, sine sclero, etc. In fact it has been known to be effective on all of the different so-called autoimmune diseases including lupus, RA, MCTD, and the rest.

“Christine from Inspire told me SD will be fine with just Minocin, is this always the case?” It sometimes is, but one thing you will read here is that treatment and results vary from one person to the next. My son was on only mino for about six months and after he was dx'd with Lyme we added azithromicin. His current protocol is in my signature line below. A couple of weeks ago he had IV's of Clindamycin, twice a day for five days.

“Is AP always done by IV? I can't swallow pills at all.” The Clindamycin part of the AP can be done by IV but I don't know if mino is available in anything other than pill form. I'm only familiar with the pill version. Hopefully someone else can answer that.

“Is there an average amount time someone is on AP or will it be a regular thing until I see improvement?” No, there is no average. As you start reading what people post here, you will see many different time frames. My son saw almost immediate results when he started mino. I'm assuming that since you have morphea that you probably have the same hard patches of skin that he had. His started to improve after only a few weeks on AP and now, a year later, they are essentially gone, with only very minor scarring remaining. The RA symptoms in his hands however, did not improve. We seemed to hit a plateau which is one of the reasons we did the Clindy IV's recently. We're also gradually moving towards more of a Lyme protocol as well.

“Can you just go to the hospital and do it then come home?” My son did his IV treatment as an outpatient. He went to the hospital in the morning and then went back again six hours later each day for five days. But these IV treatments he received were just an adjunct to his primary AP, which has consisted of taking mino twice a day, every day, in pill form. Again, dosages vary. His dosage is fairly typical at 100 mg. Some people also “pulse” which means taking mino every other day, or Mon, Wed, and Fri, or something similar. People who pulse generally have another AI disease such as RA. People with sd generally take mino every day.

I hope that helps. Again, you should follow up on the recommendations from Lynnie and Kim. In the meantime, please do not hesitate to post questions, as many and as often as you want. 

[mkbeeliever]

Stacie,

I love it that you are here!!!!  I check up on you periodically on the other board.  You strike me as a very smart young lady and I know you'll find your answers.  There are some really smart and helpful people here who will guide you and challenge you.  You know that Christine is actually “Lynne G/SD” on this board.   She's our “Mother Hen” and I know she'll be thrilled to see you here if she hasn't already!

Blessings,
Michelle

[Parisa]

Stacie,

I believe that some patients who have swallowing difficulties open up the capsules and sprinkle it on food to get it down.  It's not the best way as it can affect the absorption but it's better than no minocycline going down at all. 

 

[Lynne G.SD]

Hi Stacie;
     Glad to see you are going to be doing some serious reading and questioning.Iknow my English is not very good and think you did not quite understand me when I said Mino would do  the trick and nothing else would be needed.That does work for some people that are lucky enough not to have SD caused by micoplasma and co.
    You can read Richie's postings,he has done fabulously on Mino alone but it has taken years to get back to his former self.He thinks his SD was caused by Benzyne(aircraft fuel) and I agree totally with him.Many chemicals can do just as much ,if not more damage than bacteria..
                       XXX mother hen

[Lynne G.SD]

Michou ,my sweet, how is mom doing these days.So sorry not to have been around lately.I may pop in for 5 minutes here and there but never have time to see what is going on.
   Orchids are growing like mad and I'm repotting from morn to night.Had our anual BBQ for the members of the 2 Montreal orchid societies and the Ottawa one.That called fo 2 weeks of mega preparation and coking.The theme this year was Thai Flowers and Thai Food.  Wish you had been here.I am still eating lefovers.  hehehe
                      XXX  you other mom

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