Inspire Scleroderma – Sharing My Impressions

[lneal]

Aynur! 😀 Thank you so much for this link and all of your help!
Gosh, if they would just get on ap maybe they would start feeling better, too and not be so grouchy! 😆
And, did you notice yet another “new” patient diagnosed with morphea. That is about 4 or so this week.
Coincidence or bait? 🙄
Thank you for not giving up!!!! All of you helped my son to be on the road to recovery! 😀

[aynurrzepa]

Really, Lauren, another one?.. I haven’t read that thread – for the time being I try to keep away from the negativity it gives off… I’ll read it now though as you intrigued me…
Reading Inspire only inspres me to inspire others about AP! But I have to do it carefully now, as I don’t want neutral people to get any wrong impressions, they might miss a chance to get to like AP if they see and APer being bashed so much and the APer taking their bait… – Have to use all my skills here to be better than them…Saying thig makes me sad though – they are fellow sufferrers, and I really wish them all well, but they make me want not to like them … but I really don’t take it persoanlly, I feel sorry for them and frustrated that they are so unwilling to help themselves… I can see how bitter they are – see the thread on “Nutrition”..have I been snubbed or not! I was just offering an additional advice – they do that all the time there but no, comes an APer and they get mad.. Oh well, never mind… I will still post for the sake of others…and my onw sake. Promoting AP gives me the extra strength to stay positive at all times… It’s something I’ve always suspected (the infectious cause) and it just makes so much sense when nothing else does and nothing else works…
I think I’m herxing actually, off to write a post about this, need to discuss… 😕
Take care: you and your son – let me know how you’re getting on

[lneal]

Aynur–Another one yesterday and today, yet another “new” parent of a child looking for help. Must be trying to bait me. That makes 5 new mothers looking for help this week–all with localized morphea.

I still can’t understand why people don’t have a little bit of common sense! But keep inspiring, Aynur! Yes, I saw the thread and keep staying above it all! I notice they only attack the knowledgeable, experienced ones–so in a sick way you should be flattered. You are trying to help them and they see you as a threat. They know if they admit what you say could be true, then their house of cards will come crashing down! Very sad.

A friend of mine had her mother visiting here this weekend. She is the mother of 8 children and she is 76 years old. Told me the story when one of her boys was about three years old and started having mild seizures. Mind you this was probably 45 years ago and they were petit mal seizures. The doctor told her it was probably from a fever/infection. This child was on medicine for 2 years and sure enough, cured, and the seizures never returned. Today if you look up pet mal seizures there is “no known cause.”
I think one day the medical community will see the light! nothing is truly idiopathic!

Keep Inspiring! I’ll keep you posted! I know my son will get well!!!! 😀

[zanardi77]

We have this site to discuss AP so why do you need to have a mission elsewhere? You very likely won’t change anyone’s mind, and by the recent posts there, people are not happy with anyone who discusses AP too much! We don’t want AP discussion banned from that site and I’m afraid if people complain too much that could happen. So you may want to soften your approach if you really want people to listen. What’s that saying :you attract more bees with honey than with vinegar?

[lneal]

Hi Zanardi77,

I am not trying to change anyone’s mind. And wish I had time for a mission elsewhere, but don’t!
Interesting that Inspire is coming on this board and cut and pasting posts from here. Boy, they are really going out of their way….

My priority is to take care of my family and to get my son well! I actually only post when there is another mother who needs help with localized sclero, which is what my son has. I give only my experience, of what we have done for my son—what has worked and not worked for my son. I have some experience since we have must use both traditional and alternative treatments. And I research and explore what will be best for my son. I will not give up until he is cured! 🙂

Hope you are doing well! Best wishes!

[MINOCINMAN]

@lneal wrote:

Hi Zanardi77,

I am not trying to change anyone’s mind. And wish I had time for a mission elsewhere, but don’t!
Interesting that Inspire is coming on this board and cut and pasting posts from here. Boy, they are really going out of their way….

My priority is to take care of my family and to get my son well! I actually only post when there is another mother who needs help with localized sclero, which is what my son has. I give only my experience, of what we have done for my son—what has worked and not worked for my son. I have some experience since we have must use both traditional and alternative treatments. And I research and explore what will be best for my son. I will not give up until he is cured! 🙂

Hope you are doing well! Best wishes!

I agree with others that have basically stated that trying to “Convert” others is wasted time, energy, and resources that would be much better focusing on assisting those that are trying to resolve their various health issues. Offering members of this forum suggested treatment plans, changes of diet, etc, but to spend a lot of time trying to persuade that AP is the way is not wise.

Simply provide them with the link to RBF website and let the wealth of data sell them of the protocol. if this will not do it, all the bantering will be futile and waste of time.

[zanardi77]

Exactly Minocinman!
AP sells itself so let’s have the confidence for it to happen organically rather than making it our mission to convince others.

[Lynne G.SD]

I agree with you also but what makes me so sad is that there are quite a few people that are considering AP but as a last resort.By then it is usually too late to reverse all the damage.Get SD early and you have a good chance of getting well.I can’t understand why people can’t dig deep and look for the cause of their diseases and just expect to take a pill of some sort and get better.It breaks my heart the most to see young mothers with such heavy loads on their backs.

[richie]

Hi–After about 11 years of this scleroderma thing –I have an excellent policy –I tell someone about how well I have done on minocin –if they are interested -I am only to happy to give them more details –if they attempt to dispute me or question me –I just go on and say to myself ” their loss” —AS an aside about 11 or is it now 12 years ago I went to a meeting of the Scleroderma foundation local chapter and saw the attendees –wheelchairs oxygen –people generally looking real sick –I immediately came to the conclusion -“-no one is getting any better here” and quickly moved on –In all these years I have seen the SD foundation latch onto one thing after another to treat the disease –relaxin -cytoxan –and lately cellcept —-all with poor to mixed results —still nothing has come up to compare to the effectiveness of minocin in treating scleroderma –If anyone doesnt believe it –I say “your loss” —
richie

[aynurrzepa]

I hear you all and agree with your comments… I am not getting into any heated disputes after a first few attempts to explain how and why AP works – I got my lesson! No point – if they are ready they will turn to AP/RB… For those who it will make sense to there is already plenty of info. Nothing else can be adeed and would be just going over and over the same thing…People have to take charge of their health and make their own decisions…
Better concentrate on self and those who use AP here – for idea and support exchange…
Thank you to all!

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