Home Forums General Discussion Time For A Rant

This topic contains 8 replies, has 8 voices, and was last updated by  MLTelfer 1 year, 4 months ago.

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  • #456073
    richie
    Participant

    I just got my email of Inspire whic is an Sd organiztion –Same line of Sh-t that they had 15 years ago –really still noting –Big talk about a Genome project at Stanford–I jsu dont get people –all that talk about hope –suffering and what a terrible disease –Bob Sagets sister passed –Jason Alexanders sister passed –a few years back the president of the Scleroderma Research Foundation passed -and still nowhere do I read that people tried any antibiotic approach and still the so=-called expert doctors dont even try it –I have a friend whose wife has scleroderma –he knows how well I did and continue to do –I mentioned if he wants to know what I did etc -I will be glad to tell him –no response and she is slipping –now mostly in a wheel chair -and lung and heart involvement now . I dont know what it is –stupidity -blind faith in behind tjhe times doctors –I really dont get it —I am teed off –Good night —

    #456075
    lynnie_sydney
    Keymaster

    Oh Richie – am so sorry. It must be overwhelming for you to hear of – and see – people doing badly and sometimes dying from SD.
    It’s just a factor of how very, very difficult it is to move people out of their particular paradigm.
    I have experienced this over the many, many years I’ve been addressing my disease with antibiotics, sups and diet. Occasionally people want to know, most don’t (even those who are similarly suffering). I know this is different to the extreme life and death situation that people who have SD face. But it is the same principle…..some people just don’t want to hear about anything that challenges conventional wisdom and/or the paradigm they choose to sit inside.

    You are such a great role model. You cannot shift those who want to stay put, for whatever reason. Just continue to be there and be around for that percentage of people who are willing to hear. I’m certain you’ve been responsible for a great many people choosing to walk this road back to health. You are invaluable Richie. Take your comfort from that.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #456076
    Calida
    Participant

    Richie, you do so much for so many, even the newcomers at Inspire. When someone questions me about the efficacy of AP, I often tell your story and suggest they visit the board here and follow your posts. This is especially true of the male patients as they seem to feel even more isolated and less inclined to get involved in some of the discussions at Inspire. That’s why your story resonates with them. It’s straightforward and appeals to both men and women who understand that the Scleroderma Foundation exists to give hope to future patients, not those who are diagnosed today. Once new patients understand that the Antibiotic Protocol is available NOW, they contact RB and often disappear from the Inspire forum as that type of support is no longer needed.

    I offer to meet with people to show them photos of past skin involvement, labs and test results so that they can see for themselves that AP can change the scleroderma prognosis. I’m even willing to travel reasonable distances to give them more than just an Internet testimonial to hang their hat on. The problem isn’t the Inspire Scleroderma Foundation forum, they allow open discussions about AP and don’t interfere with referrals to RoadBack. It’s, surprisingly, the bullies, fellow patients who use fear, ridicule and misinformation to sabotage AP discussions on the Inspire board. New patients are frightened and confused and are understandably grateful to those who warn about “snake oil” treatments. Unfortunately, there are what I call “professional patients” who use fear to gain a cult following who hang on their every word. It has nothing to do with altruism and everything to do with the darkest side of humanity where one or two take advantage of confusion to gain power over others for powers’ sake. It seems to feed the black hole inside that should contain a compassionate heart.

    It’s thanks to LynneG, CherylF and a few other patients who recovered from scleroderma using the Antibiotic Protocol that new Inspire members learn that there is hope, they don’t have to wait in desperation for a “promising” new drug that won’t be approved in time to save their lives. When people read Lynne and Cheryl’s stories at Inspire – when I first read their stories at Inspire – it’s often the only good, positive news they hear following a scleroderma diagnosis.

    A scleroderma researcher recently told me that there has been no improvement in mortality rates for scleroderma patients in FORTY YEARS! Can you believe that? In spite of millions spent on research and new technology, we are no better off than someone who was diagnosed with SD in the 1970’s. The only gain has been the addition of ACE inhibitors to prevent kidney crisis.

    In spite of that dire news, I continue to find new studies published that support the use and efficacy of AP in autoimmune disease such as Temple University School of Medicine’s research published last July;(http://www.sciencenewsline.com/articles/2015070620190044.html Temple-led Research Team Finds Bacterial Biofilms May Play a Role in Lupus Published: July 6, 2015.)

    The study article ends with this thought expressed by the lead researcher:
    “Understanding how biofilms trigger autoimmunity may ultimately lead to changes in patient treatment, Dr. Gallucci said. “So understanding how the biofilms affect flares could lead to a different treatment approach. Now, they give immune suppressive drugs. Maybe you want to do something else, like treat the underlying infection.”

    I’ll never understand how the compassion industry, foundations that promise the world and deliver nothing, grew stronger than the search for truth. It’s clear to see that some organizations have turned into powerful lobbying machines whose members stand to lose financially and professionally if a cure is ever found for whatever disease they represent. I have to say, I do believe the Scleroderma Foundation is an exception and its heart is in the right place. However, the RoadBack Foundation is the only organization that exists today that offers scleroderma patients the ability to reach remission so that they may live a long and healthy life until a cure is found.

    I hope I didn’t add fuel to the fire, Richie. It’s just that your anger is justified and I’m in the midst of trying to reconcile the success of my AP fight against scleroderma with the continued suffering of those who grow worse using immune suppressing drugs offered by SD specialists and rheumatologists. But the most important point I wanted to share is that I believe I’ve read every post and reply you’ve ever written in the RB forum. You and others here changed my life, gave me hope and are literally responsible for hundreds of patients who found information through SFInspire but remission through RoadBack.

    Best always,

    Kelly
    (aka Calida/kellyann99)

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #456080
    Wayne
    Participant

    Hi Richie,

    We (my husband and I) haven’t posted here in a very long time. We do pop on occasionally to view the latest posts though. My husband Wayne was diagnosed with SD back in 2009. It was a very rapid and aggressive disease progress which took hold like a freight train. The diagnosis the doctors gave were grim to say the least. I am here to say today that without the Antibiotic Protocol, Wayne would not be here today. It was instrumental for his healing, (along with diet of course). We used to read your posts (and others) and were encouraged by your progress. Wayne’s latest lung scans showed no significant damage, in fact the extensive damage that was shown in the early days, was reversed, thanks to Antibiotics. He’s now been back working for the last 18 months, which in itself is a miracle really. Yes, he’s a different man today, but nothing so drastic that keeps him from enjoying life. Keep up your good work Richie in encouraging others, like you did us.

    Wayne & Helen
    Perth, Australia

    #456081
    susanmary
    Participant

    Hi Richie
    Just adding my “you entittled to your rant” hug.

    All your posts are straight forward and open – yes UNFORTUNATELY, the world is full of fear – whether justified or not and it is almost impossible to surmount.
    I am so very sorry that you have witnessed the passing of so many and can hear the sheer frustration shaking you to the core.

    Whilst I do not have a “proper” diagnosis of this life altering muscle,ligament,tendon and bone pain it does not alter the pain of 12 years ,how it changed my life and the MANY roads one goes down (just get labelled into the Arthriticky,Rheumatism, spasm THINGY) to manage ones life.

    I had literally exhausted everything from mainstream to alternative – the only thing I hadn’t done was go down the Heavy Duty Drugs path. I had fabulous results with AP, my healty diet etc for 106 weeks till I had My “glitch” and I am a walking ,talking advocate for the therapy and have bought copies of The Book for people – yes QUITE OFTEN people get that “She is a Mad Woman” look about them for some reason they find AP much more scary than Biologics etc.

    So RANT away you are perfectly able to do it here :):):) I have only put AP on hold till I sort out this hurdle and will be back on some form when I return.

    You have no idea – well you probably do how hard I have had to fight to keep off certain drugs not because I am anti drugs , I am anti no good track record drugs.

    So I hope you take some solace in the postings you have received

    Warm Regards
    Aussie Susan
    PS ROYAL NORTH SHORE HOSP are running a lab trial to see if antibitics can help knee arthritis – do you think I should buy them a copy of “The Book” LOL

    #456083
    bonnielou
    Keymaster

    Richie, I hope these emails help you realize how very much your work is appreciated here at the Road Back. I know it’s horribly frustrating to see people so blinded by their own biases. It reminds me of the Loren Eiseley ‘Starfish’ story:

    “While wandering a deserted beach at dawn, stagnant in my work, I saw a man in the distance bending and throwing as he walked the endless stretch toward me. As he came near, I could see that he was throwing starfish, abandoned on the sand by the tide, back into the sea. When he was close enough I asked him why he was working so hard at this strange task. He said that the sun would dry the starfish and they would die. I said to him that I thought he was foolish. There were thousands of starfish on miles and miles of beach. One man alone could never make a difference. He smiled as he picked up the next starfish. Hurling it far into the sea he said, “It makes a difference for this one.” I abandoned my writing and spent the morning throwing starfish.”

    You are making a difference to so many. And while you can’t yet save them all, do not lose sight of the impact you are having. Thank you, and thank you for being such an active part of this community.

    Bonnie Lou
    RA 02/07,AP 10/07
    Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
    Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

    #456086
    richie
    Participant

    To
    Wayne and Helen –You made my day !!!!Thanks –richie

    #456099
    Randy
    Participant

    Hi Richie,

    You have been and continue to be my role model.

    We all want a quick fix. Some fixes to medical problems are hard, some long, some work pretty well. Thanks to you, Cheryl, Maz, and others of the Roadback I have a fix that is working.

    Randy

    Diffuse SD since Apr '07
    AP since Feb '08
    100mg Mino twice daily + 1200mg Clindamycin IV's 5 days/Mo
    "No one should profit over someone else's illness"

    #456100
    MLTelfer
    Participant

    It is frustrating – I came across somebody with a child that was suffering and treatment outcomes were to date less than satisfactory. I gave everything I had and never heard back. Really? You just have to walk away. The thing about this is that it is so simple and so inexpensive and so many people benefit from it and people don’t want to give it a chance? How somebody can leave avenues unexplored is beyond me but there are two things that come to mind: first is it is a long term commitment and second it sounds too good to be true.

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