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  • #454119
    lemons
    Participant

    There is an article published today on the Mail Online website, in the health section titled, “Don’t Let Your Doctor Kill You” an extract from a book written by Dr Erika Schwartz. Its about the arrogance of many doctors in how they fail to listen to their patients.
    I think the majority of members on this site will agree in her philosophy. She is an advocate of the empowered patient & suggests that more people should seek out second opinions on diagnosis & treatment.

    #454120
    lynnie_sydney
    Participant

    Yes lemons a great article. Hard to pick one, but probably my favourite quote:

    Taking control of your health begins with making the right choices for your own life, and then with your relationship with your doctors. No patient can afford to believe ‘doctor knows best’. Even if you have one who is wonderful, well-trained and who genuinely cares, the system is so broken you still can’t turn over complete control of your health.
    Doctors may have the experience and expertise, but we can never truly know more than you do about what is going on inside your body. Unless you take an active role in your own care, you will always be at the mercy of our educated assumptions.
    You need to go from being a passive observer to actively being in charge of your life – leaving the ‘perfect patient’ behind and becoming ‘the empowered patient’.

    Here’s a tiny url link to the whole article: http://tinyurl.com/plr5bp7

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #454125
    Maz
    Keymaster

    Hi Lemons,

    Thanks for sharing this great article and also to Lyn for the article link.

    If interested, it’s timely you shared this, because a new RBF Blog entry was made last week that focuses on the critical importance of health-related self-advocacy and a link at the foot of the article to read about the experience of a Duke doctor-researcher who also had to learn the value of self-advocacy when he became so unwell.

    https://www.roadback.org/blog/becoming-your-own-best-advocate/

    #454126
    lemons
    Participant

    Hi Maz & Lynnie,

    If the truth be known , I will always hold a deep feeling of gratitude towards the rheumatologist I was referred to in 2013. If he hadn’t been such an arrogant a#*# hole, I might have agreed to the X Rays, needle aspiration in left knee, possible MRI scan, and a prescription of methotrexate 12mg per week , hydroxychloroquine , sulphasalazine and steroids.

    Maz , I read the blog and Lyme is getting a lot of air time here at the moment. I took my dog to the vets recently for her annual jabs. When I was there I asked if they would look back on her records, to see what year it was that I took her in to have a tick removed. It was embedded behind her ear and I couldn’t remove it. It happened in 2009, the same year I had a bout of shin splints and soreness in the base of both my thumbs. As you know I was tested for Lyme in 2013 , the ELISA result was equivocal but the western blot was negative. I was told the equivocal result was because of the RA , but if I am RA negative how would this be ?
    Oh how I wish I was filthy rich , if I was, I would have every test carried out in the best labs by the best doctors that money could buy. I would love to know what horrors are lurking within !

    Lemons x

    #454128
    lynnie_sydney
    Participant

    If the truth be known , I will always hold a deep feeling of gratitude towards the rheumatologist I was referred to in 2013.

    I can truly understand that Lemons. I will always feel a sense of gratitude for an experience I had in around 1990 – when I spent two lots of 2 hours sitting in the public rheumatology department of a major hospital waiting for an eminent professor to see me (I wanted to consult a highly regarded rheumatologist/pain management expert who didn’t see private patients). Watching a procession of grey, wizened, crippled people go past me during that endless wait at first depressed me. But, on the second occasion, I suddenly had a strong feeling of “THIS is not going to be MY road”. It was another decade before I stumbled across AP, but that was the beginning of my taking a very different path.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #454129
    Woods1977
    Participant

    This is great read, and it’s so very true. People put too much stock into their physicians, period. They aren’t Gods, they don’t know everything. There’s no way in hell I would accept any kind of treatment moving forward until I do my own homework and feel comfortable with the approach. Unfortunately not everyone feels that way.

    #454133
    Maz
    Keymaster

    Hi Maz & Lynnie,

    If the truth be known , I will always hold a deep feeling of gratitude towards the rheumatologist I was referred to in 2013. If he hadn’t been such an arrogant a#*# hole, I might have agreed to the X Rays, needle aspiration in left knee, possible MRI scan, and a prescription of methotrexate 12mg per week , hydroxychloroquine , sulphasalazine and steroids.

    Maz , I read the blog and Lyme is getting a lot of air time here at the moment. I took my dog to the vets recently for her annual jabs. When I was there I asked if they would look back on her records, to see what year it was that I took her in to have a tick removed. It was embedded behind her ear and I couldn’t remove it. It happened in 2009, the same year I had a bout of shin splints and soreness in the base of both my thumbs. As you know I was tested for Lyme in 2013 , the ELISA result was equivocal but the western blot was negative. I was told the equivocal result was because of the RA , but if I am RA negative how would this be ?
    Oh how I wish I was filthy rich , if I was, I would have every test carried out in the best labs by the best doctors that money could buy. I would love to know what horrors are lurking within !

    Lemons x

    Lemons, I love seeing your posts here – they just make me hoot out loud! You’re such a ray of sunshine.

    The article is brilliant, really narrowing down where there are serious cracks in the “standard of care” system that has become so formulaic that it has lost sight of individualized patient care. Doctors have been coerced into robotic mind-sets that deprive them of their ability to see a patient as a human being and this must be incredibly frustrating and nonsensical to them, just as it is to us. The irony of “standard of care” medicine is that it is intended to protect patients and doctors, but has become so formulaic that potentially strips doctors of their ability to practice the true art of medicine.

    I think listening to my old Dad (now passed), who was a veterinary surgeon, made me realize that there is an art and intuitive side to medicine. He was not at all surprised when I told him that I was using antibiotics to treat my RA. He said that he used Tylosin, a veterinary antibiotic, to treat mycoplasma in pigs that had caused arthritis. He then went on to tell me some amazing stories; one story where a drove of pigs had been infected and a number that had come down with arthritis at once. He had prescribed Tylosin to the farmer to treat his pigs, but when he returned for a visit, the farmer had been non-compliant, saying he thought he’d try copper wire, first. The old guy dug a trench around his pig enclosure and literally buried copper wire! He swore it was the copper wire that “cured em all!!!” This left my Dad wide-mouthed and scratching his head, wondering what in heck had just occurred! Of course, he said, copper has antimicrobial properties, too, which may have accounted for the pigs’ recovery. I think vets, on the whole, are a bit better at diagnostics and more open to alternative treatments, mainly because their patients can’t speak and quite often a grumpy farmer’s livelihood is at stake (and home remedies passed through the generations), which makes “standards of care” a bit more difficult to formulate in a one-size-fits all kind of way – lack of a controlled environment in a farmyard – and trialing “whatever works and doesn’t cause harm” a little easier to accept.

    #454139
    jasregadoo
    Moderator

    I remember once many years ago, I told my doctor that sometimes after eating, my fingernails would turn blueish. Like all of the blood was leaving my fingers. He said, “huh, I’ve never heard of that”, and moved on. That didn’t bother me really, but it disabused me of any idea I might have had about doctors knowing everything. A good doctor can be a wonderful ally in your fight for health, but you obviously have to do your research and know what it is that you want going in.

    #454140
    enzed
    Participant

    The article resonated with me. A few months after being diagnosed with SD in 2009 I saw a rheumatologist. At our second appointment he announced he was about to book me into the hospital where he would carry out an endoscopy. I asked why. He said ‘I need to know what damage the SD has already done to you.’ I knew not to consent to it. I said I would need to think about it. I went back to my doctor and asked for his point of view. He was horrified. He explained about the tears that can be caused by endoscopy surgical equipment and how dangerous the procedure can be. He told me never to consent to that procedure without checking back with at least one doctor as to whether or not it was actually essential for some medical reason. Excellent advice.

    #454141
    lemons
    Participant

    Thanks Maz x

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