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View Diary: Lyme: How I told the doctor what to do (226 comments)

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  •  I find most doctors are okay with my (6+ / 0-)

    multiple chemical sensitivities when I tell them it's mostly neuro and 99% of its treatment is my responsibility.  I offer to give them my neurologist's number if they have any questions.  Not a one has taken me up on the latter.

    Never meddle in the affairs of cats, for they are subtle and will piss on your computer.--Bruce Graham

    by Ice Blue on Thu May 19, 2011 at 09:50:20 AM PDT

    [ Parent ]

    •  I think I know what you mean. I believe I'm in a (8+ / 0-)

      situation now in which my neurologist (armed with his positive MRI) and my rheumatologist (armed with his positive ANA) are not in agreement about what I have, and neither wants me to know that. If they'd talk to me about it, they'd find that I have a pretty high tolerance for ambiguity, and they'd know that I already know that it's rare for one person to have the two conditions these two tests are pointing toward. Sheesh. I'm not too worried about it at this point, because I also know that in either case (or both cases), the first-line treatment is the same. My rheumy did recommend that I take something additional, and it's cheap so I'm trying it and it's helping. HOWEVER, it can cause irreversible blindness, so I'll be seeing my opthamologist soon to see what he says about it.

      Men never do evil so completely and cheerfully as when they do it from a religious conviction. -- Blaise Pascal

      by RJDixon74135 on Thu May 19, 2011 at 10:49:13 AM PDT

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      •  Blessings (4+ / 0-)

        feel better soon & keep seeing clearly.

        'Give away to the rich and punish the poor for the extravagance.....crazy' --LaFeminista

        by MsGrin on Thu May 19, 2011 at 01:12:47 PM PDT

        [ Parent ]

        •  Thanks, MsGrin (3+ / 0-)
          Recommended by:
          Camp Other, MsGrin, Ice Blue

          It took me decades to figure out (with the help of the internet) that several of the transient symptoms that seemed unrelated and insignificant to me DID fit together. When I put them all together on one list and took them to my doctor, finally he let me get my head examined (first via a CT and then an MRI), and referred me to the MS go-to guy in my city (He treats MS exclusively, so I believe he knows it when he sees it. Heck, one thing I saw on the internet was a study guide for medical students that included an MS MRI and they were expected to be able to identify it, so it must not be THAT hard.) But now, with the additional drug from the rheumy, I am feeling a LOT better. So, who knows.... I just hope I'm one of the people who can take it with no eye problems.

          Men never do evil so completely and cheerfully as when they do it from a religious conviction. -- Blaise Pascal

          by RJDixon74135 on Thu May 19, 2011 at 01:50:21 PM PDT

          [ Parent ]

      •  I'm okay with ambiguity too (3+ / 0-)
        Recommended by:
        MsGrin, Ice Blue, RJDixon74135

        I prefer knowing what the possibilities might be, and have doctors believe they might be possible - and even say "I don't know" - rather than say that they are sure and be wrong.

        At the same time, you've gotta try something to relieve symptoms and have some quality of life, so based on a hypothesis, choosing a course of action is important even amid the "I don't knows".

        I'm glad you're getting help and not too worried - good luck with the new meds, I hope they help.

        •  Thanks, Camp Other. The Rheumatologist has (1+ / 0-)
          Recommended by:

          really been worth what he's cost. He tested me for vitamin D deficiency and when it showed my level was way low, he prescribed 50,000 units 3 times a week for 6 months and now 50,000 once a week. He said it would relieve a lot of the pain I was experiencing, and he was right! About a year later, when I complained about memory loss and general brain fog, which I could have assumed were MS symptoms or even just being 63 years old, he tested me for vitamin B12 deficiency and when that turned out low, too, he recommended methyl B12, sublingual. By golly, that's helped a lot, too.

          I've done quite a bit of reading about these approaches online and I recommend that anyone who's over 50 and would like to have fewer pains and be a little sharper mentally should do the same. They'd probably be worth a try. You do need a prescription to get that much vitamin D in one fell swoop, but then it costs about the same as buying it at a health food store, and my insurance (when I had insurance) paid for it. It's just easier to take it all in one cap.

          I feel comfortable reading about medical stuff online because I worked more than 25 years in science publishing and know how to evaluate a research paper. If you don't, stick with, the web site of the National Institutes of Health, where you can access the abstracts of real research studies that have been published in real, peer-reviewed journals. Here's a link to a tutorial that will show you how to search the site. When you find something on a topic that interests you, be sure to check out the references for other papers that may also be of interest. Many of them will be linked to the online sources. Quite a few won't let you see whole papers -- or, at least not the most recent papers -- without paying, but everything you need should be in the abstract, which you can access. Also, many of the older papers show how many times the study has been cited in subsequent papers. The more, the better. It gives you an idea of how well the research community has continued to regard the work over time.  

          Of course, avoid the sales pitches.

          Men never do evil so completely and cheerfully as when they do it from a religious conviction. -- Blaise Pascal

          by RJDixon74135 on Thu May 19, 2011 at 08:30:02 PM PDT

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          •  I already do search PubMed and Oxford Journals (0+ / 0-)

            Have you seen my blog? A huge percentage of what I write there is based on abstracts and research.


            I'm going to start taking more Vitamin D and B-12 and see where that takes me - though I have been trying to increase my dietary intake of these things first.

            I don't think taking those will improve the fact that I have a lot of pain in my legs and my knee is damaged - all signs point to Lyme arthritis. I'll see what it will do to improve the cognitive and fatigue problems I've been having, though.
            I'm worn out.

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