I have Scleroderma and am just so scared all the time

[Joe M]

Hi Jen,

I truly believe our thoughts play a large part in how we feel and our outlook on life.  One thing that has helped me in the past is the book “feeling good” by Dr. David Burns.  It does a great job in helping identify negative though patterns and how to change them. 

Best wishes
Joe

[PetRescue]

Thank you all again for your support and encouragement. It's so good to know ZI am not alone. Yes, Joe I do also believe your mind/thoughts have a huge role in how we feel. I tend to feel physically worse on the days I am most anxious. The problem is I am most anxious, well, most of the time. I am trying to do some helpful reading about the power of positive thinking and will check out the book you recommended.

I just saw a sclero specialist at the slero program at Northwestern University today. He diagnosed me with secleroderma sine scleroderma, as I do not have any skin tightening yet. I mainly only went to see what he would say and lucky at this point he does not recommend any medication. Well, lucky I should say, no “bad” medication. I didn't even bring up AP as I figured it wouldn't be worth it to a researcher.

Now I have a new worry though-What if AP doesn't work for me? I absolutely, 100% believe in it's theory, but I am afraid it won't stop my scleroderma from progressing.

How do I make it until April 26th when I see Dr. S in Iowa? I admit it-I am a worry-wart. Ever since the miscarriages, I worry about the worse case scenario for everything. I know that I have nothing to lose as I jokingly asked the sclero dr-“So, do you have any drugs that can stop this?” and he said no, but we do have clinical trials for drugs that can help your symptoms.

I just need to know that this will work! I know that's insane as no one can tell me it will, not even Dr. S, and I have no other options, it just has me worried that I won't be a success story-I'll be one of those people why they say AP doesn't work.

I guess I'm just still scared to be optimistic-how do you do that? How do you convince yourself that this will absolutely 100% work, with no doubt? I'm sure everyone struggles with this at some point-and maybe the best outlook is something I've already said-I HAVE NO OTHER OPTION! THIS MUST WORK!

~jen

[Kim]

Jen,

You are asking for absolutes which is unrealistic.  There are no guarantees on anything in life. 😕 

Read the other Scleroderma boards where most people are using the conventional approach and compare how they're doing with those using abx and then make up your own mind.  You are going to have to take charge of your health care and make things happen and the first step is learning all you can so you can believe in your treatment choice if this is what you decide to do.

Now is the time you can start correcting all the other stuff that contributed to your getting sick in the first place like leaky gut, food sensitivities, endocrine problems, etc., etc.  I'm convinced that abx won't make you well if you have gut issues.  It's all about strengthening your immune system to start working for you again.

Even if you see the best AP doctor in the country it's still up to you to partner with that doctor and pay attention when things have stalled and should be tweaked or adjusted.  You know your body better than anyone else so a good doctor will welcome your input.  Any doctor that tells you it's my way of the highway, take the highway. 😉

I have to say it seems like the people that do the best on AP are independent thinkers and are well prepared when they see their doctors and are not afraid to question them or say no to them if it doesn't feel right.

Take care…..kim

[Lynne G.SD]

Hi Jen;
     I wish I had time to sit down and write you a long letter.Alas I am just sooooo busy that I get to the computer for only a few minutes a day.
   Kim is right,listen to her and get yourself prepared.Get tested for Celiac  http://www.enterolab.com and for Lyme http://www.igenex.com   These are tests you arrange yourself,not the doctor.It is better to know the devils you might face before ever seeing your AP doctor.I had no idea I had Celiac or Lyme.Now after almost 11 years I am back at square one and having to start all over with a Lyme protocol.So much wasted time.
    Lynne
   

[bhubregs]

Jen: Just a short note to say that in spite of what you read or what others might prescribe, generic minocycline or doxycycline are perfectly safe and equally effective as name brand. Please do not feel you must use brand Monocin and pay the exhorbitant prices. I can provide verification from FDA's own data to substantiate by e-mail if you wish.  billh, Texas 

[carries]

Hi Jen! I also had a high ANA…still do 1:10,240. I have a speckled pattern. I also have swollen fingers and raynauds. My dr is suggesting MCTD…maybe crest. Did they do a scl70 (think thats what its called) test? or RNP? or SM. Anyways, Minocycline has worked wonders for me. I am on the generic too. I have been on it for 6mths on monday. I know exactly how you are feeling….I was feeling the same way. However, since AP things are looking more positive. My numbers are improving….slowly…not so much ANA but I feel great!!!! I was told not to focus on the numbers this early…but I always get copies of my labs and analyze them from then to now. Hang in there! Try not to obsess so much on a diagnosis…it will drive you crazy!!!Mine is always changing…..First it was RA…then lupus….then UMCTD….then CREST…now MCTD. Try to just focus on just getting better! The support from the roadback is AMAZING!!!! IT really has helped turn things around for me.

[PetRescue]

Kim-thanks for bringing me back to the real world. I'm just having a hard time not worrying. I always tend to worry about worst-case scenario stuff. I need to change that and be certain that this will work for me.

And that's a good point-I do look at the other boards and everyone seems so glum. I know in my heart and head that AP is right for me, I just have to believe. I am sometimes too scientific in my research and want to find someone with the same story as me-and guess what-I did!!! And it's the best story ever! It is Jess's story!!! I had read her story from the Scleroderma Voice magazine, but I guess I didn't put 2 and 2 together and realize that her treatment was AP!!! It is truly what I needed as our stories are extremely similar. I think that is why I was having doubt-most of the success stories here are from sclero patients who had positive scl-70 or extensive skin involvement. I have neither so I thought maybe I wouldn't succeed. Jess's story has renewed my belief and I know this will work! It has to!

I am an independent thinker and will absolutely make own decisions about my care! I am trying to research as much as I can on this site and make as many changes as I can to support a healthy gut. I have been gluten-free for a couple weeks now.

Lynne-thank you for the info on those tests. I am going to have to prioritize and only get one at the moment. I think I should choose the Lyme one, correct? I unfortunately do not have unlimited funds for tests and meds, so I'm trying to prioritize. Will Dr.S in Iowa want to run additional tests as well? I just don't want to waste tests.

Carrie-yes, I have been to three different doctors and gotten three different diagnoses. PCP said CREST, Rheumy said I had nothing, and the sclero specialist said sclero sine sclero. It doesn't really matter to me anymore as all that matters is that I have Scleroderma. I have had the scl-70, sm, sm/rnp, and sjogrens ssa, ssb and they were all negative. My SED rate was 11, my RF was 15 (a little high), and my CRP was .34. I am going to have to take the generic Minocycline at first as that is all my insurance will cover. It's good to know you feel great even though your ANA is not down. I feel great now-so it will tough for me to know that the AP is working. I hope I don't herx, but I'll almost be glad if I do so I can know it's doing it's job. Have you been tested for Lyme?

Thank you, thank you, thank you. You are all so kind to help me on my journey. I am so grateful to have great people who care. You all have been my knights in shining armor keeping my head above water. I will go on AP and I will get better!

~jen

PS…I have an appointment with Dr.S on April 26th. I was going to go to my PCP next week to get a jump start on minocin. Will that affect any testing he wants to do? I think being on the minocin ASAP will make me feel better about doing something, but I don't want to affect my appointment with Dr. S.

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