Home Forums General Discussion Scleroderma Publication John Hopkins

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  • #308502
    enzed
    Participant

    I found this publication ‘Systemic Sclerosis 2nd Edition by Phillip J Clements and Daniel E. Furst.’ on the John Hopkins Hospital website yesterday. The chapter on Scleroderma can be downloaded and read in pdf. Its recently published, very informative and includes an explanation as to why people with SD have painful feet because the tendons are affected. The tendons under my feet have shrunk over a period of 10 years. This publication is the first explanation of SD feet issues I have come across. When I asked the rheumy last year about my painful feet he said they hurt because I was getting older, which is total rubbish.The tendons are apparently affected by fibrosis which causes the problems in walking.

    I’m not great at links but I copied and pasted this and it took me to the article.

    http://www.hopkinsscleroderma.org/downloads/SystemicSclerosis_Chapter23.pdf

    The authors also explain how the current drugs used by rheumy’s to treat SD are mainly untested and one that was tested, was found to be no more effective when used in high or low doses. I made me very glad that I never let them experiment on me with their immune suppressants or other drugs because there are no replicated studies to show those drugs work or are safe for SD.

    All the improvements in SD I have had, have come from AP. Even though I have had some difficulties with die off reactions and hypersensitivity issues from AP, they can be managed with washouts and detoxing and the SD is greatly improved from where I was 2 years ago.

    #373486
    richie
    Participant

    Hi These two doctors have no connection with Hopkins -lots of talk but no answers in this article -One of them has been around for years investigating drug after drug with at best mediocre results –IMO nothing has come close to results attained by antibiotics yet they do not look into it -investigate it etc rather a negative approach is present –AS to why feet hurt —while there may be tendon involvement the most common cause is loss of padding on the feet –why or how this happens isnt understood but it is a fact –I g ave up reading many so-called expert doctors opinions years ago cause they say nothing and dont really offer any answers at all —
    richie

    #373487
    richie
    Participant

    Hi AS a matter of fact they are both connected to UCLA –and the Scleroderma Foundation –I just think they really dont have anything to offer in the way of a concrete advance in treating scleroderma —-I just read an interview where one of those “experts” is beating the drums about a new ACE inhibitor to help ward off renal failure–whoopde do I have been taking an ACE inhibitor for 15 years now !!!!!!!!!!!!!!!!! They still have nothing to treat the over all disease and remain very much anti–antibiotic which is their long standing position along with the Scleroderma Foundations position –That is why over the years so many people have come to this site from the Scleroderma Foundation cause there is a course of action here -{antibiotics} that offer a very real chance of success —-When I first got sick in 1999 before finding out about antibiotic I went to one of these so–called hotshots in NJ –I was told I need to take various kidney heart and lung tests to establish a baseline –why ? to watch my decline !!! Instead I went to Harvard to see someone {DR T } who got 6 out of 11 people better !!!! That was the best odds I could get –I might add 15 years later I am doing great —-you will have to excuse me but I get pissed off when I read about so–called experts in the field of scleroderma who deny any effectiveness of antibiotics at all claiming {its not been sufficiently tested } why then dont they test it then ?????? Being around a long time I feel I know the answer but I will keep it inwards —
    Richie

    #373485
    enzed
    Participant

    @richie wrote:

    Hi AS a matter of fact they are both connected to UCLA –and the Scleroderma Foundation –I just think they really dont have anything to offer in the way of a concrete advance in treating scleroderma —-I just read an interview where one of those “experts” is beating the drums about a new ACE inhibitor to help ward off renal failure–whoopde do I have been taking an ACE inhibitor for 15 years now !!!!!!!!!!!!!!!!! They still have nothing to treat the over all disease and remain very much anti–antibiotic which is their long standing position along with the Scleroderma Foundations position –That is why over the years so many people have come to this site from the Scleroderma Foundation cause there is a course of action here -{antibiotics} that offer a very real chance of success —-When I first got sick in 1999 before finding out about antibiotic I went to one of these so–called hotshots in NJ –I was told I need to take various kidney heart and lung tests to establish a baseline –why ? to watch my decline !!! Instead I went to Harvard to see someone {DR T } who got 6 out of 11 people better !!!! That was the best odds I could get –I might add 15 years later I am doing great —-you will have to excuse me but I get pissed off when I read about so–called experts in the field of scleroderma who deny any effectiveness of antibiotics at all claiming {its not been sufficiently tested } why then dont they test it then ?????? Being around a long time I feel I know the answer but I will keep it inwards —
    Richie

    Hi Richie, no need to excuse you! What you say is quite valid. What caught my eye in the publication was the explanation of tendon changes related to SD. I too used to forage on the SD Foundation website and stopped visiting their website when I sent them a question about AP, asking why they didn’t promote or use or otherwise discuss it – and didn’t get an answer. 2 years later I am still waiting for a reply! I thought they were quite unprofessional. Hand in glove with drug companies I expect.

    I too have suspected the annual heart and lung tests are to ‘measure’ our demise in terms of deterioration over time, so they’re really doing research on us without saying that’s what they are doing.

    I would have pulled out of the rheumy clinic here but my family Dr persuaded me to continue going every 6 months on the basis its free and if I did suddenly deteriorate he could get me help really fast. But my 6 monthly heart and lung tests haven’t showed any changes or deterioration in the past 2 years, since they were begun, which is when I began AP.

    At my last appointment the rheumy I saw got very annoyed with me when I asked for my blood test results – he said very aggressively, ‘why do you want to know?’ I explained I would like a printout (refused) and then insisted I wanted to write the results down. He did eventually give them to me because I just sat there waiting with the pen and paper ready, (an effective passive aggressive technique) and I did record them but he was furious. He’s an arrogant sod, a foreign import.

    The previous rheumy, an Australian, was always pleasant even when he disagreed with my views which was quite often, but he always remained professional. But he was trialling drugs I’m sure – the ones I refused to take, so I guess in that respect I became a lone control group!!!! Maybe that’s a reason for me to continue attending the rheumy clinic!

    If there’s anything against AP in the chapter I cited and I missed it, (I did speed read it) please feel free to take this topic down. 🙂 I thought that chapter was a fairly good description of SD symptoms and therefore could be helpful to newly diagnosed people, without scaring them half to death as almost everything written on the Scleroderma Foundation website does.

    #373484
    enzed
    Participant

    I reread the chapter more slowly and there is no mention of AP treatment for SD.

    What I found interesting about it, is that they admit there is no treatment they can offer to treat SD, that the drugs they do use have not been scientifically tested on SD patients, (which makes them experimental in my view) and that they have no idea as to the cause of SD, other than making reference to a possible ‘virus’ that may have set off a chain reaction that causes the symptoms known collectively as CREST. But they’re not prepared to claim a ‘virus’ as a cause because they just don’t know the cause. They are guessing.

    Anyone with SD who has found their way to The Road Back website therefore has no reason not to try Dr Brown’s antibiotic protocol. It beats those dangerous, mainly untested drugs the Scleroderma Foundation website promote as standard treatment. It must be where most rheumy’s get their information from regarding treatment. The tetracycline drugs are far less risky in comparison.

    Not only that, but there are many people with scleroderma on this forum who can attest to the fact that Dr Brown’s antibiotic therapy actually works over time.

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