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  • Misdiagnosed FAQ

    I’ve prepared a Frequently Asked Questions section in our Misdiagnosed area of ActiveMSers, separate from the book, to address the inevitable tsunami of questions you will be having. Could I be I misdiagnosed? Do I have Lyme disease? Should I get tested? What should I do right now? What are some recommended resources? I strongly advise reading this FAQ, which will be updated regularly as our story progresses.

    https://www.activemsers.org/misdiagnosed-faq
    Dave Bexfield
    ActiveMSers

  • #2
    Very succinct, Dave.

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    • #3
      I read the FAQs. I think that will be a big help for people who need a new vantage point to get a new perspective. But it's still the Dr,s and the Labs and the Insurance Companies and the Government that throw lots of monkey-wrenches into the machinery. Sabotage it is - taken from the French where workers would either throw their wooden shoes (sabot) carelessly into machinery during labor disputes or from the idea of "just clunking around" in their wooden shoes doing very little work and even that work was done wrong so as to mess up the employer's production. I like the first one best but what the heck. Anyway, even the system is rigged against us here in the Mid-West. I gave my PCP a copy of the DVD, "Under Our Skin" but he hasn't commented on that yet. Well, he's busy trying to retire and it will only be a year now in August that I gave it to him. Oy!
      As a matter of info, my son had to pay for his own tests that convinced his PCP to try Doxy for his problems. It cost him the big bucks but at least his PCP decided to play along since the tests were "off the record" so to speak. The Rx was for 2 weeks with 3 refills. My son felt better in a week and was back to normal half way through. I told him to make sure he took the full course with all the refills and he did. He is self-employed and was stuck in bed for a week at a time. Now he's normal, working out and driving his semi almost every day. He just needed the chance for treatment.
      Keep up the good work. As always, I look forward to each new submission every Wednesday and keep you and your wife in my thoughts and prayers. Semper Fi.

      Comment


      • #4
        Unfortunately, the CDC is a horribly-outdated dinosaur of a place to look for good Lyme information. Even within the CDC website the information remains unclear, probably the result of the politics over Chronic Lyme. To date, the woeful lack of adequate research, diagnostics and testing makes the CDC one of the last-place authorities on Lyme Disease, imo.
        Privately-funded Lyme research by a few foundations is giving the needed boost in research funding that our crippled beaurocratic government has failed to provide.
        I am finding that Lymedisease.org, Taking A Stand 4 Lyme, Bay Area Lyme Foundation, Global Lyme Alliance, ProjectLyme.org, CenterforLymeAction.org, the Cohen Foundation Research Consortium, what's going on between Johns-Hopkins & Columbia University (https://www.columbia-lyme.org/clinical-trials-network, https://www.lymectn.org/default.aspx,) to be better places to get caught up on the state of Lyme research as it's being updated. I found this very informative video in this article by Stanford's Lyme Disease Working Group helpful: (https://www.prnewswire.com/news-rele...300763176.html) and would start there.
        Last edited by Becca from Cali; 08-02-2022, 09:36 PM.

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        • #5
          THIS VIDEO is better than Under Our Skin, imo.
          /PRNewswire/ -- Stand4LymeŽ Foundation has created a critically needed, credible and comprehensive video on the serious consequences of Lyme and tick-borne...

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          • #6
            That video is fantastic! I found it on the stand4lyme.org website. It can be viewed on YouTube also. I tried downloading it from YouTube and it seemed to work ok. I want to make copies digitally to share with my Drs who are very lyme illiterate. Very being the operative word. Thanks for the info! This is exciting and needs to be shared!

            Comment


            • #7
              Right?! It's literally the best piece put out by credible scientists and doctors that I've run across so far. It made me excited and I shared it in different lyme-related fb groups. It's golden

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              • #8
                Their website, stand4lyme.org has a bunch of good videos. I have been watching some of them and they are all interesting.

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                • #9
                  I'll have to check them out! Thx

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                  • #10
                    One question not answered. What can we do to help?

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                    • #11
                      I'll have a better idea soon, thanks for asking....
                      Dave Bexfield
                      ActiveMSers

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                      • #12
                        ...to help ? To help the quagmire regarding Lyme being misdiagnosed as MS? I'd say donate to Lyme disease research or get involved and tell our legislators to fund the science for better Lyme diagnostic tests and better treatments, therapies to cure it.
                        Is that what your question was referring to?

                        Comment


                        • #13
                          Becca, if I properly do my job, there will no longer be a quagmire. And the funding floodgates for LD will open. Count on it. -D
                          Dave Bexfield
                          ActiveMSers

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                          • #14
                            I've got my fingers crossed Just saw PBS News story today on how ALS funding went way up due to activism. I sure hope to see similar attention from Congress for this. Cheers! And happy New Year!

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