Remission when is it really remission.

[martysfolks]

Hi everybody.  It's been over a year since I last posted.  At the time I was on MP and not doing too well.  Prior to MP, I thought I was in remission.  Well, I finished the MP by modifiying some of the medication and a few month later, my doctor tested my ANA.  From a 1:640 and diffuse,  my results were 0.  I stared at it in disbelief.  The RF was still up at 38. —-six months later, I went to a different lab just to make sure.  Again  the ANA was —0. And this time the RF was also —0.  Well this is now 6 months later.  I now live in the Puerto Rico as I do not tolerate cold weather.  All my Scleroderma symptoms are gone.  Not only are my S/D symptoms gone, but all my organs that were affected like heart, lungs, kidney, liver, skin, neurological symptoms like unstable gait, double vision, dizziness, etc. are all gone. Raynaud's was the first to go.  My heartbeats perfectly without any missed beats, and even the diabetes, which was out of control is extremely manageable.  I don't have to inject anymore. The hypertension is manageable on medication and I no longer have elevated trigycerides, & cholesterol.  No need to take statins, either. My joints are all perfectly normal.  No swelling, no deformities, and my skin all over is a soft as a babies bottom.  I can swallow fine and no more diarrhea, vomiting or chronic cough.  I put myself on a maintenance dose of Minocin 100mg. MWF.  That is it.  Does this mean that I have finally reached remission?  I don't see specialists. anymore.  My new insurance requires referrals for that.  Since the symptoms are gone, there is no need.   I see a GP once every three months for a check up.  When I first moved  here,  I told him the story of my scleroderma, I told him I was on A/P and that it is not well accepted in the Rheumatological doctor groups.  I told him that in spite of so many nay sayers that A/P has worked for me.  His answer was, “Well, if it works for you, that is good enough for me.  So, I gave him a copy of the A/P FAQ sheet in Spanish.  This doctor is very thorough in his check-ups.  The only thing he found was a UTI for which he is giving me cephalexin.  I'm on it now.  At the end of the week, I should be finished dosing.  I am to wait about a week and then go for a urine culture.  We will go on from there when those results are in. The entire time I suffered from Scleroderma symptoms, I never had a UTI.  I had a few before S/D and this is my first one since all my blood work came back negative.  So, is this what  real remission is?  Should I remain on maintenance dose for the rest of my life.  I don't ever want to go back to being so sick and expected not to make it. It took me almost 5 years to get from there to here.  So, where do I go from here?  Dolores P. Rosner 

[richie]

Hi-I do remember you from a few years ago –So great to hear how well you have done —I am a strong proponent of taking as a minimum a maintenance dose of minocin because the possibility of relapse is very real —while I am in remission and feeling great I share your concerns of never wanting to feel as bad as I did –I  still generally take the full dose of 200 mg daily –on occasion I will take only one capsule for the day —
richie

[mkbeeliever]

Dear Delores,

Great to “meet” you!  You are a scleroderma remission celebrity to me!  I am so very happy to see your post!  Your journey is so inspiring to my mom!  SO glad you are still doing so well.  Thank you for popping in!

Blessings,
Michelle

[martysfolks]

Hi Richie,  Nice hearing from you again.  These past two years have been incredibly busy in my life.  I've moved 4 times, taken in my 95 yr.old Mom  to live with us.  She has  Alzheimers. Gave up my apt in NY and now live on the  remote Island of Vieques in the Caribbean. Next week, we are finally moving into the beach house in Puerto Rico.  Didn't have much time to dwell on my own health and was shocked when the blood work came back completely normal.  After a long span of absence, I am back to posting. Just started up again and found myself referring people back to you for Doctor referrals, off another support group site.   You are the one who originally referred me to Dr.T back in 2005.  for which I am forever grateful.  Mike and I are looking to purchase a piece of property  that we could turn into a rural retreat for people with arthritic diseases who would like to come down and enjoy the warm climate, especially in winter when it is cold up north.  I need to keep busy and decided to run a country home during winter months.   Heard about all the snow, rain and wind storms happening in the Tri State area.  Although I miss NYC, I do not miss the cold.  Glad to see you are still busy helping people.  Our best to you, Dolores & Mike Rosner   So, Am I really in remission?

[lynnie_sydney]

Hi Dolores – nice to see you back and with such great news! :dude:

So, Am I really in remission?

Well it certainly sounds like it by Dr Brown's definition – symptoms resolved and blood work normal. If it were me, I'd come down on Richie's take on this – stay on a maintenance dose for insurance. However, no one but you can make that decision. Stay well! 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)

[martysfolks]

Hi Michele.  Thank you so much for the kudos on acheiving a long sought after goal.  What is your mom's name?  Tell her I said to just keep the focus on getting well and not to linger on the symptoms as they have a tendency to come & go.  Having to deal with Scleroderma is one of the craziest journeys I have ever been on.  You go along thinking you are doing well and suddenly some symptom jumps up and throws you back on your butt real hard.  I can't tell you how many times I was elated at my progress and then so disappointed when a symptom would bring me down again.  It is a roller coaster ride I don't ever want to go on again.  My blood work results all point to remission and yet am afraid to declare it as I don't want to be knocked down again.  All I know is that I went from bedridden in 2005 to becoming my mother's caretaker, moving us, moving her, reestablishing new roots in a foreign area and thinking of starting up a farm type retreat.  Now that I am well, I am not the type to just sit around and do nothing.  Maybe, I will just start out with a support group and then branch out.  What is your idea about that? My best to your mom!  Dolores & Mike

[martysfolks]

Hi Lynnie!  Love seeing that great big smile of yours.  I have missed you guys so much.  Have had such a busy year or two, taking on Mom and moving three times to get it all done.  Next week is the 4th and final move and I'm already looking to start trouble.  I just can't be idle, so we are thinking of buying some property in the country and building some cabins to set up a retreat.  Mike and I did some volunteer work while we were still in NY and it was so great.  Would love to be able to run a camp for recovering arthritics.  We use to manage a place for a friend who owned a hostel in Fl.  Each winter, we would go down and work the business.  Actually, I was down there in 2005 when I got so sick and wound up in bed for the whole season while Mike did the work himself.   We figured with all the experience behind us, that would be a good thing to do.  I actually loved working there with the people.  My friends have since sold the hostel and said they would come down and help us start up the retreat.  There are a couple of organic farms in the area.  Thinking of visiting them to get ideas on growing our own food.  What do you think?  Should we do it?  Yes, I think I am in remission also.  But will stay on maintenance dose for precaution.  I might just be prone to infection and since I got sick once, it is possible to get reinfected again.  I can't believe I've reached my goal.  Yeah!~~~Dolores P. Rosner 

[Kim]

Hi Dolores,

So great to hear from you and even better to hear how well you're doing.  As hectic and stressful as your life has been I'd say you have pushed the limits with your body and come out strong ~ sure sounds like remission to me! 🙂

I'm in remission, you can read my story in my link, but am considering going back on a maintenance dose of Mino for insurance.  I have an arsenal of abx and I'm not afraid to use them. :roll-laugh:

What a great idea to have a retreat for arthritics.  Let us know when you're taking reservations because we could have our first RBF reunion down there, in the winter, of course. 😉

Take care…..kim

[martysfolks]

Hi kim!  So glad to hear from you and see your smiling face.  I feel like I am at a family reunion already. You guys have helped me so many times.  I thank you all from the bottom of my heart.  Yes, I shocked myself when the numbers came back 0.  So many times just when I thought I was in remission for a spell, something else would crop up down the line.  But now the blood work sort of confirms it.  Yes, I agree with Dr. Brown's theory on doing a maintenance schedule.  At least MWF is a good place to be.  Just think I don't have to wait 2 hours to eat on the rest of the days.  My appetite is back and I am not gaining weight either. 

So you think it is a good idea to make the farm a go.  I think so too.  Mike and I loved to travel during our hey days when we felt good, simply because we loved meeting people and being part of a larger whole.  We loved doing the volunteer work and doing Santa at Christmas for the kids.  Now, we are ready to settle in and have people come to the retreat instead of us traveling out    It would be nice to schedule meetings, etc.  That reunion idea is super.  We could schedule it for after the holidays when it gets really cold and snowy like in January or February.  Well that would be for most of us.  Linney would be in mid summer in Australia.  I love to snorkel.  Got new snorkle gear, I can't wait to try out.  God, Life is getting good again.  Definitely worth the A/P trip.  Everybody throw away those toxic drugs and go with A/P, it works.  Been there, done that.  God Speed.  Love to all.  Take care, Dolores & Mike   

[Lynne G.SD]

HEY DODO!!!!
     You are back with us,Halleluja.I have not been near the computer for more than a minute at a time and am just on a pee break now so I will get back to all of you later ..as in after supper…
    Dodo,I see you have met Michou,one of my “I wish to adopt” kids.
   Michou,Dodo is the first person I dragged off the SD foundation site years ago and who has become a best friend.We hardly ever chat anymore as we are both sooooo busy but we always know where the other is if needed.Dodo was officially made my big sister years ago.
          Love you kids

[mkbeeliever]

[user=31]Lynne G./SD[/user] wrote:

HEY DODO!!!!
     You are back with us,Halleluja.I have not been near the computer for more than a minute at a time and am just on a pee break now so I will get back to all of you later ..as in after supper…
    Dodo,I see you have met Michou,one of my “I wish to adopt” kids.
   Michou,Dodo is the first person I dragged off the SD foundation site years ago and who has become a best friend.We hardly ever chat anymore as we are both sooooo busy but we always know where the other is if needed.Dodo was officially made my big sister years ago.
          Love you kids

Hi Dodo, I'm Michou!
Lynne, I love you!!!!!!!!!!!!!!  You crack me up with the nick names! :roll-laugh:

xxoo
Michou (aka Michelle)

[martysfolks]

Hi Lynne G.  Did you ever give Santos that big smackeroo & hug from us.  When I posted last night, I just knew that this post would pull you out of your Greenhouse again.  Not sure if that dinasour of a computer you are still clinging to was even up to the task.  How do you like them apples.  I waited 6 months testing and retesting to see if it was staying stable  Could not believe my eyes when I saw the ANA & RF remain at 0 and everything else within normal range.  Kid, remember all the troubles I had with my heart.  Hospitalized 4 times and had 4 heart surgeries and still my heart would not behave.  I have not had one single run of tachycardia, A Fib, nor irritable heart beats in over a year or more…  Minocin & my immune system got rid of all the micoplasma in my heart.  The lungs are good too.  Some residual damage is left, but that oxygen gets down there and does the job well.  No more crackles.  Oh! kid you were so right about A/P.  I did not ever think I was going to live to see this day come.  You are definitely my special angel.  I love you girl, like you were my own kin. Miss our late night talks.  How is Santos doing?  He is such a gifted artist.  Has Pantinho ever dropped out of the sky to say hello again.  Folks, Patinho is a cute little duckling that Lynne & Santos rescued one dark night.  They raised him like he was their baby and pantinho turned out to be a wild goose who finally flew the coop with much coaxing on Lynne's part.  He would come back periodically and one day brought his wife back to introduce her to Lynne.  This is a true story!  I still have the photo of him planting a kiss on her cheek for not leaving him at the goose farm.  If the world were like that goose, so grateful, and people like Lynne so caring, there would be peace on earth.  Lynne is mother earth.  Mike and I love you guys.  Yeah!!!! HeeeeeHaaaaaaw! I'm in remission.  Love Dolores & Mike (aka Dodo to Lynne)  Yes, she is my adopted baby sister. 

[martysfolks]

Hi Michou! (Michelle)–Lynne is an angel sent from God.  Just like she rescued Patinho, she rescued me.  I had sent a very sad post out of the Scleroderma Foundation site.  It was a desperate attempt to reach out to someone to save me.  The docs had just given me a death sentence.  My lungs were so bad, they said I wouldn't live 5 more months.  I was so sick that just to get from the bed to the bathroom was like trying to make a round the world trip.  I was devastated and wrote that note with tears running down my face.  Mike, my sweetheart of a husband, was crying too.  We were devastated.  Our 29 yr, marriage was comming to an end.  I would never live to celebrate 30 yrs. like we had planned.  Somehow, that evening, I managed to get my butt to the computer and got this querky e:mail asking me where I have been hiding?  Under a rock?  How come I haven't heard about A/P?????

---

My head was in a fog bank.  What is this lady talking about?  She was in remission from a deadly disease?????? How could this be?????Somehow, she led me to the RBF and then to Richie, who led me to Dr. T. in Boston, who put me on Minocin.

---

That was 2005—-This is 2010 and I am in remission.  YES, I AM IN REMISSION.  This year, Mike and I will get to celebrate our 35th wedding anniversary.  We are still sweethearts.  And life doesn't get any better than this.  It was a long rough trip.  Not any I would have signed on for, but it was the most important trip of our lives and Mike was with me, supporting me all the way. And Lynne was there for me every night of the week.  Santos was the sweetheart behind her.  I could not have done it without them and the rest of the RBF, Dr. T. and Minocin. So, Lynne will always be that special person in my heart. I've got to stop now or I will make myself start crying all over again.  Take care, Love, Dolores & Mike

[Trudi]

[user=111]martysfolks[/user] wrote:

…life doesn't get any better than this.  It was a long rough trip.  Not any I would have signed on for, but it was the most important trip of our lives and Mike was with me, supporting me all the way. And Lynne was there for me every night of the week.  Santos was the sweetheart behind her.  I could not have done it without them and the rest of the RBF, Dr. T. and Minocin. So, Lynne will always be that special person in my heart. I've got to stop now or I will make myself start crying all over again.  Take care, Love, Dolores & Mike

Thank you so much for sharing this.  This gives all of us a real boost; I am delighted to read of your plans now that you are in remission!!

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[martysfolks]

Hi Trudi,  Pleased to me you online.  It has been a long time since I posted on the RBF, but I feel like I came home.  You have all been so welcoming and wonderful. 

So, you think that my idea of opening up a retreat in the tropics for arthritics is a good idea.  I do too.  Am seriously going to check out all the details once we move to the beach house and get all settled in. I received so much support during my illness, so now I would like to pass on the love.. 

If anyone ever doubts that A/P doesn't work, just send them to my post and all the other success stories because without minocin, I wouldn't be here right now making plans for the future.  Take care, our best to all who are now on the road back to wellness.  Dolores & Mike

[Author]

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