Home Forums General Discussion An End to a Means?

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
    Posts
  • #308087
    MLTelfer
    Participant

    I’ve got it. I’ve got “it”.

    I have read and color code highlited the book and all the literature about AP. Watched the videos. Read the articles. The information is finite. Visited the AP doctor. Ran voluminous blood test after voluminous blood test. Learned how to read blood tests. Took a class on Excel so I could graph and analyze blood test results. Watched youtube and took notes on every psoriatic arthritis presentation by the Royal Free Hospital, the Cleveland Clinic, and every other reputable rheumatologist who specializes in psoriatic arthritis.

    Then a funny thing happened on the way to the AP forum.

    Like many of us I started studying psoriatic arthritis (or fill in your condition). Not read…STUDY! Like many of us I am so amazed at the vastness and complexity of the information and data. It makes me wonder. With all the new research what would Dr. Brown say? How would he have course-corrected and incorporated this ever expanding knowledge to his theory of rheumatoid disease? Are there any AP doctors out there that are synthesizing AP with ever advancing scientific discovery of the cause-effect biology of cytokines and interleukins and inflammatory proteins, etc. and their roles in arthritis?

    I don’t think Dr. Brown intended his work to be an end to a means….he was looking for a means to an end. I believe he was on to something, but never got all the way to that “something”.

    I am unlike many of you who had disease and then reaped the benefit of AP. I started AP early on, so I will never know the improvements you experienced, but I believe in you and respect you.

    I am compelled at this point to study the mechanisms of the disease separate and apart from mycoplasma infection theory, then at some point integrating a treat to target approach of my sons symptoms. Intellectually I am going to embrace traditional rheumatology and scientific breakthroughs during this window of opportunity so when the time comes to step up the treatment I will be prepared. This HAS to be MANAGED correctly NOW. He is only 22 and needs to advance through the course of treatments in an organized and systematic process that will balance quality of life now with future threats to joint damage and side effects. I cant just hand my son over to rheumatologists and say “here ya go….do what’s best”.

    Listen. I know many of you have done this and know so much more than me. If I sounds pompous, I apologize. I am quite prepared to be humbled by this disease. We are all searching for the unique key that unlocks our unique bodies and unique disease on our unique journeys. It’s time for me to tie together different theories and make connections and logically incorporate all points of view. If it’s ok I will post what I think as time goes by…..Mark

    My son has had no discernible improvement year one of AP. Maybe he would be worse without it. I am going to give it another year. We caught the disease early and have this opportunity to “swing for the fence”.

    #371312
    richie
    Participant

    Hi Fortunately for PSA there are other options now available –after one year of AP -perhaps its time for another alternative —you are fortunate that there are alternatives -in diffuse scleroderma there really isnt a second alternative =-only AP —
    By the way –nice speech !!!!
    richie

    #371313
    Anonymous
    Participant

    @richie wrote:

    By the way –nice speech !!!!
    richie

    I agree, nice speech. I share your worries, your studies and struggles. So much information and it seems as though no scientific out there is having a “ha ha” moment that makes him realize the true missing link in such rheumatic diseases.

    #371314
    Krys
    Participant

    @richie wrote:

    Hi Fortunately for PsA there are other options now available –after one year of AP -perhaps its time for another alternative..

    I agree with Richie.

    What I got from your posts:
    You’ve been studying PsA. Your son has been on AP since May 2013, with no improvement. You fear (your post Oct. 28, 20130): “the disease will have its way with him anyway.” On your thread: “Need Advice”, you wrote : “He is on the same diet he was on before PsA. There have been no modifications since onset of the disease.

    My impression is that you do not want to consider any dietary changes.
    Maybe if you expand your research to include the role of anti-inflammatory diet in the control of rheumatic diseases and explore the connection between starches and PsA, gut health and PsA, the whole picture will look much less gloomy?
    Krys

    #371315
    marypart
    Participant

    Are there any AP doctors out there that are synthesizing AP with ever advancing scientific discovery of the cause-effect biology of cytokines and interleukins and inflammatory proteins, etc. and their roles in arthritis?

    My son’s rheumatologist uses both the traditional medications, including Embrel, Simponi, and other biologics, methodrexate, whatever…. and also does an intensive AP protocol. It depends on what the patient needs. My son tried Embrel for 8 weeks but couldn’t tolerate it, but in the end fighting the infections was what worked for him. It took 18 months of non-stop high-dose antibiotics, antifungals, antivirals and anti-parasitic.

    He also did 6 months wheat-free and cow-dairy free. He did have goat milk products. He mostly ate a Paleo diet while in treatment.

    He’s been in remission– no symptoms since the summer of 2012 after two years of joint pains and fatigue.

    #371316
    MLTelfer
    Participant

    @Krys wrote:

    @richie wrote:

    Hi Fortunately for PsA there are other options now available –after one year of AP -perhaps its time for another alternative..

    I agree with Richie.
    What I got from your posts:
    You’ve been studying PsA. Your son has been on AP since May 2013, with no improvement. You fear (your post Oct. 28, 20130): “the disease will have its way with him anyway.” On your thread: “Need Advice”, you wrote : “He is on the same diet he was on before PsA. There have been no modifications since onset of the disease.

    My impression is that you do not want to consider any dietary changes.
    Maybe if you expand your research to include the role of anti-inflammatory diet in the control of rheumatic diseases and explore the connection between starches and PsA, gut health and PsA, the whole picture will look much less gloomy?
    Krys

    It’s funny you should mention diet. He is coming around to this idea now. He will be graduating from UCF in May and I have been studying diet lately, to include blood type diet. I didn’t force the issue yet. Between school and study I didn’t want to put him into a position where he would fail or a situation of conflict between us over something that would be difficult for him to follow. I think the time for this is coming.

    I am going to give AP one more year. The Celebrex is helping him a lot and brought his stomach issues under control. He started Celebrex in September and since then his ESR has gone from 48 to 5 and his CRP went from 22 to 12 to 8.7. No real improvement in his symptoms though. Celebrex? AP? Some other reason for the improved inflammation markers? It’s beyond me but I will be watching him like a hawk.

    Thanks to all for your time and interest!

Viewing 6 posts - 1 through 6 (of 6 total)

You must be logged in to reply to this topic.