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View Diary: This is Your Brain on Lyme. . . my own experience (178 comments)

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  •  Until the 1970s, MS was believed to be imaginary (12+ / 0-)

    by many.  MS patients often had physicians tell them to buck up and stand up and walk.  

    Now, thankfully, we respect how debilitating and tragic it can be.

    My Lyme hasn't been anywhere that severe, but many Lyme patients are misdiagnosed with MS because their symptoms look very much like it.  We hope it won't be too long before Lyme is also no longer imaginary.

    ‘When you look at the... wealth controlled by the top 1%... it’s tempting to see our growing inequality as a quintessentially American achievement—we started way behind the pack, but now we’re doing inequality on a world-class level’ Joseph E. Stiglitz

    by MsGrin on Sun May 08, 2011 at 07:45:58 AM PDT

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    •  I struggle with it myself (10+ / 0-)

      I have this idea that I should be able to pull myself together. I had cognitive testing done by neuro-psychologist and she put on report that I tend to see symptoms from progression of ms as character flaws.

      MS is humbling. Fighting doesn't work. I feel for people who not only have to struggle with themselves but doctors too. I am sure it is extremely hard.

      MRIs helped with diagnosing ms although I think some still have hard time. I was diagnosed kind of quickly. I didn't even know what ms was. Actually after I went to neuro I saw a friend who had ms and told him about symptoms. He was like sounds like ms. He freaked me out. But it wasn't long after my neurologist confirmed it.

      Best wishes to you!!

      "IJDH provides the tools for people who care about Haiti to make a real difference on the ground."-- Bishop Thomas Gumbleton

      by allie123 on Sun May 08, 2011 at 08:29:17 AM PDT

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      •  I hear you about *fighting* (4+ / 0-)

        My health history was long and complex before Lyme, having had multiple heart valve replacement surgeries.  I WAS able to fight my way back from extreme complications with those situations, but with Lyme, the harder I fought, the worse I got.  

        I'm counting on science/technology to make great advancements to stop the progress of blights like MS and return people's lives to them.

        In many cases, Lyme actually IS curable - trickier in some cases than others.  But people do not seem to recover without antibiotics/immune support, so going years and years without diagnosis meant long-term suffering.

        I appreciate your support of us, here, in our effort to get the word out and wish you every success in a return to wellness.

        ‘When you look at the... wealth controlled by the top 1%... it’s tempting to see our growing inequality as a quintessentially American achievement—we started way behind the pack, but now we’re doing inequality on a world-class level’ Joseph E. Stiglitz

        by MsGrin on Sun May 08, 2011 at 09:03:57 AM PDT

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        •  Exactly! (4+ / 0-)

          The things I have heard many with lyme go thru with doctors are horrifying. I support you all anyway I can. Our conditions can be so similar.

          Fighting for me is huge. There is a chapter about me in a book (under different name). It is called Rebecca motivation and fighting spirit- not a good match with ms:-) But that is probably true for most people.

          "IJDH provides the tools for people who care about Haiti to make a real difference on the ground."-- Bishop Thomas Gumbleton

          by allie123 on Sun May 08, 2011 at 10:08:38 AM PDT

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      •  Not to beat a dead horse... (6+ / 0-)

        But have you been tested for lyme allie123? (Properly tested, I mean. By Igenex.) There is ample, albeit anecdotal, evidence that neuro lyme is misdiagnosed as MS. Lyme can also produce the brain/spinal lesions imaged on MRIs and associated with MS.

        Personally, if I had been diagnosed with MS, ALS or Parkinson's, et al, I would have wanted to be tested for lyme anyway. It can't hurt, and might well inform a different and perhaps (perhaps) more treatable scenario.

        Now, I'm not exactly objective about these things, but I sometimes think that as many as 30% of people living in lyme-endemic areas may have lyme and related tick-born illness. I think lyme should be tested for in these areas the way CBC and liver enzymes are done during yearly check-ups.

        And as I've said before, I am quite emphatic that anyone diagnosed with CFS, IBS, Fibro, "non-standard" RA, and especially any combination thereof, be tested for lyme.

        "'club America salutes you' says the girl on the door/we accept all major lies, we love any kind of fraud"--The Cure, "Club America"

        by Wheever on Sun May 08, 2011 at 09:10:58 AM PDT

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