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Hi everyone,
For the past two months I have been reading feverishly the postings to the site. I was in awe from my first read. Never before had I felt so much hope when it comes to living with this dreadful disease.
I have been diagnosed with scleroderma since I was in my early 20's, in hindsight I probably had it when I was in my mid to late teens. I remember that I always had cold, bluish tinted fingers but we explained it away as poor circulation. I don't remember going to the doctor much when I was young, once to have my tonsils out and that was about it. So, I lived with my diagnosis of “poor blood circulation” and “hacky cough” for many many years. These were my years of denial, I refer to those years as the best years of my life, if anyone understands that one.
For 20 years I a full, productive and active life. We raised 4 kids and I always worked a full time job. My husband and I also had our own business for many years so I didn't have much time for myself. I lived my life for my family. I remember seeing my first rheumatologist, at that time I did have finger pain and ulcers quite often. He treated me with medicine but for the most part I did a lot of bacatracin and band-aid therapy. It also helped to be busy with kids, I didn't have time to focus on the pain. Just live with it, like I said at that time that denial was the best medicine for me.
We made several trips to Mayo Clinic and did the full week of tests. At the end of each visit, with the exception of one, we were told to go home, take the minimal medicines they gave me for my swollen hands, digital ulcers and the last bit of advice – try to alleviate any stress. At this time our two older children were sassy preteens and we had two businesses – no stress – hmmm.
None of the doctors that I had seen gave much hope, they too were still learning of the disease. And of course, I always thought how fortunate I was because I didn't have any internal involvement like so many others had. I had discovered the internet and spent many hours online researching and reading stories, sometimes that wasn't such a good thing.
On one of our visits to Mayo, the doctor told me on my exit visit that I would be lucky if I lived 5 years, people with scleroderma don't get much life expectancy. I remember walking out into the lobby, sobbing and scaring the heck out of my mother, who waited for me. 5 years, 5 years, 5 years….that was the only thing I could mutter. Who was this man and how dare he tell me I had 5 years – I had 2 children that needed me and 2 more that came shortly thereafter. Thankfully, my mother, who incidently had mentally blocked this visit from her memory, assured me that we would find a cure and that I had to think positive. What would we do without our mothers?
So, here I am 5 + years later still proving Dr. ???? wrong. I still frequent Mayo for follow up and on my visit in 2007 it was discovered that I know have extensive lung damage. Throughout the years, I did have ILD and fibrosis but it wasn't deterring my lifestyle. I still had an extremely active life, I played softball, golfed, bowled and shopped, loved to shop! I knew prior to making that trip in 2007 that things had changed, I could feel the changes. I remember having to stop to rest, walking much slower than I had in the past and feeling like I was grasping for air. I was at the drs office much more often being treated for pneumonias and brochial infections. I had lost weight, but at the time had no explanation why. Now, I realize that was all part of the change. They diagnosed me with pulmonary arterial hypertension, yup – another tear jerking diagnosis for us – mom and me.
I went back 6 months later to have a lung transplant review. That was another week of tests and at the end of that Tvisit they told me that I was did not qualify for a lung transplant, yup – you guessed – more water works! I guess I hoped if worse came to worse that would always be my last option. The upside was that they did tell me I could go to another institution as I may meet their criteria – I think that was supposed to make me quit crying! They did a right heart catheritization to get an exact measure and decided to start me on Tracleer and Cellcept, hoping to kick the PAH in the pants.
I went back to my lock pulmonolgist this past October for full set of PFT's. The results were not good – each one of my test had declined and the diffusion pretty significantly. He talks to me about adding cytoxan to the mix but I just ma not ready to go there. I also have extremely low iron, which could be from the cell cept and the disease itself. But this makes it more difficult for me to get oxygen and I had my first fainting spell in the wee hours of the morning – that was an interesting escapade for me and not one I want to repeat anytime soon. When my husband called my mother and sister the next morning they were at our house within minutes, mom with her blood pressure cuff machine and my sister who immediately wanted to start cleaning my house and taking away any of the stresses in my life – aren't they funny?
Where was I going with all this…..Oh yea, I went back to the scleroderma site for reading and found myself at the road back site. Thank God! I read stories upon stories of success and interstingly enough had already had the book, The Proven Therapy. I remember buying it years ago and reading it but putting it away because at that time (dumb me) didn't think it applied to me as I was in denial years. It was funny but after moving twice that book was so easy to find – almost like it was lying out for me. I started reading and completed in within 2 days. I was online inquiring, sent emails to people I found on here and got the name of Dr. S in Iowa.
So, mom and I made yet another medical trip but this time in the opposite direction of Mayo. We went to Ida Groves, Iowa a week ago. I met the most wonderful, compassionate and sincere doctor ever who instantly gave us hope. He explained to us the therapy and why it works. It all made perfect sense. We checked into the Super 8 motel, and started IV therapy (900 mg Clindamyacin 900 mg 2/day) Monday morning. The week passed quickly and I received the IV treatment with no problem at all. We had our final visit with Dr. S. on Thursday and he gave me my oral prescription (Minocycline 100 mg 2/day). He told me to come back in 6 months and to call in between if I needed anything.
I am nearly a week into my oral antibiotic and I feel good, not different so much just good. Although, I did notice on my first day back to work on the 2nd floor (17 steps w/landing) that I was able to go up the stairs without having to stop and rest on the landing – pretty significant huh? I didn't tell too many people yet because I am not quite sure if it's a mind over matter thing yet (I”m really good at that too). But…..it's day 4 of work and I am still not stopping at the landing. My son also told me that he noticed I didn't have to go directly outside at home when coming up the basement steps for air – and he noted that my pretty constant cough wasn't as constant. I did note that too. And my wheeze, which is generally always there is not near as much. Funny, how those little things became pretty darn HUGE! I hate to share too much of this as I don't want to be setting myself up – mom and I had that discussion already.
So…this is my story and not in a nutshell. I tried to think of a way to get the jist out as quickly as I could but this was the best I could do. I am looking forward to seeing my pulmonologist to complete a full set of PFT's – hoping that I see positive changes. I did talk with both he and my rheumatologist about starting the AP therapy – neither knew anything about it and said they would research it but I am not expecting that. My rheumatologist did say that I would probably be asking for another set of problems with gut flora from the antiobiotics and said “we'd be chasing our tails around” I believe that is how she coined it. However, my family dr in our town (the size of Ida Grove) said that we would monitor me and if I did start to experience any problems with my tummy that we would take care of that right away so we wouldn't be chasing tails – I liked that.
It's been wonderful reading all of your stories of hope, encouragement and guidance. Thank you all for listening.
Alli
[user=1785]Alli[/user] wrote:
My rheumatologist did say that I would probably be asking for another set of problems with gut flora from the antiobiotics and said “we'd be chasing our tails around” I believe that is how she coined it.
Alli–
Just make sure to take a lot of probiotics to avoid “chasing” those tails :)!
Good luck in your recovery–
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?
Whoooa! Crying over here…I have glory bumps too – what a story!
I can't wait to read it to my mom.Alli, welcome to your road back! Please keep posting! We will be watching your progress and praying!
Blessings,
MichelleHi Alli and welcome.
I usually skim over the words, but I read every word of your story to my husband. It's great you've found RB and you will get all the support you need.
I'm sure you are on the roadback now! Well done!
Rosemary
Hi Alli,
Just adding a welcome to the others and really happy you found us here on the RBF discussion forum! 😀 The period of denial you describe is so common and I'm sure many of us here can relate. You'll find everyone here, whether new or old APers, to be of great support – there is a wealth of experience here from which you can draw on at any time, if you need support along the way.
I second Trudi's comments about making sure to take your probiotics daily with at least a two hour window well away from your antibiotic dose. You can use the search box above and type in “Probiotics” to see all the discussion that have come up about this topic in the past. They are so important to maintain gut health while on AP and to prevent overgrowth of candida in the gut. My doc actually told me to just keep taking probiotics like they were candy. He carries cheap chewables in his pocket and pops them in his mouth all day and he's not on antibiotic therapy! I've been taking PB8 probiotics (4 times the recommended daily dose) in vegetarian caps for the past 3 years and these have worked well for me. I buy them in bulk from http://www.vitacost.com so I never run out and have a constant supply. Others have their favorites brands or whatever their doc has recommended and whatever works is what matters.
You're in such good hands with Dr. S. in Ida Grove. Well done making the trip up to see this wonderful doc and getting yourself going on AP. You have such a terrific support system with your Mom and sis helping out….now you're all set to making your road back!
Great to meet you, Alli, and can't wait to hear updates of your progress!
Peace, Maz
Hi Alli, and welcome to the Roadback forum. You are off to a GREAT start and I can't wait to follow your progress.
I am an AP success story and in full remission from Scleroderma and Lyme. Like you, I went to Ida Grove for the Clindy treatment (Dr. S. is a super-hero around here) and then later traveled to a Lyme doctor in Missouri. We figured out later that Lyme actually caused my SD and in treating the Lyme the SD continued to improve.
You have obviously already learned to be your own advocate which will serve you well in this treatment choice. If you hit a plateau it's not a bad idea to ask your doctor about adding a second abx or switch up the rotation, that sort of thing, and you'll be the best judge of when things need tweaking.
Two things that have helped me tremendously have been the frequent (almost daily at first) use of an infrared sauna and enzymes (Neprinol is the one I use). Both contribute to improved circulation in a big way and help thin your blood. Most SD people have very thick, sticky blood so if you haven't been tested it might be a good idea. My Raynaud's is almost totally gone now. You can use the search feature on the board and read previous posts on the subject.
Funny how doctors freak out about the use of abx and gut issues while minimizing the more life-threatening damage going on with your lungs, kidneys, etc. :headbang: :headbang: :headbang: Keep up with the probiotics and you'll be fine. Also, don't be discouraged if your lab results don't correlate with how you're feeling because sometimes the numbers lag behind.
Take care and wishing you all the best……..kim
Hi Alli,
I too was glued to my monitor reading your story. I suspected at the onset that the ending was going to be uplifting and positive, and thank goodness, I was right! Your story is amazing, but what is most incredible is your tenacity and drive to keep going and search for answers at the same time. I wish you nothing but more and more success with your AP treatment. 😀 I will wait anxiously for future posts from you.
Take care, NickieWelcome Alli,
You have me crying all my make up off, and the bad thing is I just put it on, becauseI was getting ready to go out. Oh, I was like everyone else, I couldn't stop reading until, I read it all…..I am so sorry that you have had to go through all this, for so many years. At least you have finally found the help that you need to get better. Dr. S. is my AP doctor also. You made a good choice in him. Well Best of luck to you.
Love, Judy
Welcome Alli, the folks here are the best. Just when my husband and I thought there was no hope we found RFBB and AP and he is doing so much better and the idea of a future is absoultely magnificent.
Never loose faith and let us all know how your journey goes.
Lana
Oh Alli,
I am so glad for you that you finally found the right doctor. I have been on the AP program for almost two years and just recently I had the best ever PFT test and ct-scan since I have become very sick in 2005 with RA and Dermatomyositis plus interstitial pulmonary fibrosis.
Keep it up and you will be well soon too. one step at the time.
Eva:D
Eva Holloway
Alli, hi & welcome from Oz,
What an uplifting story – there is no doubt your detemination has been integral in this journey 🙂
I can't wait to read your progress as time goes on.
Cheers,
Maz – AustDec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
Hi Alli – so glad that you found us and shared your story. There are alot of wonderful people who post on this site who will be there with you to support you and share their own experience and wisdom as you take this journey. Welcome to Road Back! 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)Hi Alli,
Glad to hear you found the Roadback and have started treatment. I made a post a while back about the lungs and things that have been beneficial for my husband. Look into NAC (n acetyl cysteine) and seeing if you can add zithromax at some point to your treatment plan. Good luck!
Here's a link to the post:
http://www.rbfbb.org/view_topic.phpid=2868&forum_id=1&jump_to=25871#p25871
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