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

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  •  A dear friend has been struggling with Lyme (11+ / 0-)

    for years so, while I knew of many of these symptoms, your writing has really helped me understand her perspective.

    She's a brilliant attorney who couldn't read a case, much less write about one. She just keeps climbing back up this long, long hill towards normalcy, and it's great to see the old 'Susan' beginning to show back up.

    Your comment about the herz were particularly interesting - I didn't realize that was what was going on. I have known my friend mostly since she already had the disease; I assumed (sadly) that she was just neurotic.... Maybe so, but there's obviously something mroe there too.

    Thank you!

    •  Wow, what a story (9+ / 0-)

      I hope she continues to climb back up to be herself again. I'll bet a lot of what seems neurotic is the disease process, or the response to it.

      The process of killing off the bacteria (with antibiotics) can be very hard on you and actually make the symptoms worse, in a way. You have to find a balance between enough killer-drug to make progress, vs not overdoing it and making yourself sicker. It's difficult to manage such a tricky disease when you're not functioning well!

      ~On, Wisconsin! On, Wisconsin! Raise her glowing flame!~

      by sillia on Sun May 08, 2011 at 08:05:06 AM PDT

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      •  This is very true (3+ / 0-)
        Recommended by:
        MsGrin, sillia, 42

        People going through Lyme disease/coinfection treatment often mention Jarisch-Herxheimer reactions or simply "herxing", which is when symptoms get worse while on treatment before they get better. But in and of themselves, both the disease(s) and the antibiotics can have effects on a person emotionally, physically, and mentally - often in unpredictable ways.

        Allergic reactions to medications are a problem when they get severe - and them some antibiotics can lead to cognitive and emotional side effects. Mepron, used to treat Babesia, has led to serious depression and even some hallucinations for people on it - much like many drugs used to treat malaria.

        But when you talk to most people about antibiotics, they tend to think of only the most mundane effects on one's digestive system. Hate to say it, but they can have more "interesting" side effects than that.

        •  The way to avoid too much herxing (2+ / 0-)
          Recommended by:
          42, Regina in a Sears Kit House

          is slow and steady treatment; lower doses if needed. My Lyme doctor takes a very measured, patient approach which I appreciate very much. Still, most people will get some herxing, it's part of the process. It may have something to do with the toxins the bacteria release when they die. So if you get sick from herxing, it's because you're killing off bugs--it may not be the antibiotic per se that is making you ill, but the dose may be too high. Killing them slowly releases fewer toxins. It's just that people get very, very impatient and want to bring out the big artillery.

          Hmm, killing them slowly, isn't that a song??

          ~On, Wisconsin! On, Wisconsin! Raise her glowing flame!~

          by sillia on Tue May 10, 2011 at 06:29:45 AM PDT

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          •  The song was killing him softly, I think... oldie (1+ / 0-)
            Recommended by:
            42

            Something from the 1970s, I think?

            I'm researching the entire toxin issue lately, and from what I've seen, Lyme disease Borrelia don't have any endotoxin themselves because they have no LPS (lipopolysaccharide layer) which is where such endotoxin comes from - but there is evidence that when people are infected with Borrelia and the immune system kicks in, this sets up a chain of events that leads to J-H reaction.

            Outlining that specific chain is something I plan to write about, but writing about it in a sensible (and way that makes sense) is not easy.

            Btw, I have done both the slow approach and fast. It seems to depend entirely on which antibiotic I use and how recently I've been using any antimicrobials.

            •  patent (0+ / 0-)

              Any idea what exactly it was that Donta patented?

              •  He patented based on a hypothesis (0+ / 0-)

                All I've seen thus far is that Donta and Cartwright found a gene that looked similar to another toxin and decided to patent it if anything came of it. They also proposed in their patent that Treponema might have a similar toxin. Others have tried to find evidence of a toxin and so far have failed.

                There is some evidence from research that spirochetal OspA in the brain as a strong effect on people who have neuroborreliosis, and by-products of its existence there have a neurotoxic effect. Ideas about detoxing for this are pure speculation from what I have read thus far.

                Whether or not binding agents are a useful treatment for dealing with immune system by-products in the gut/digestive system is something I've only just begun looking at - I've been focusing more on Osp research and looking for the evidence of any toxin produced by Bb... so far I think focusing on antigenic variation and various Osps is a more fruitful endeavor than looking at the toxin issue.

    •  No doubt this shit can make you crazy (5+ / 0-)

      I speak with something that feels like authority when I say that.  :-)  That's one reason why it is PARTICULARLY important to have a physician who is experienced with treating Lyme - they know the difference between the crazy one gets when the bugs are either frisky or dying and the more commonplace off some of us can have even without Lyme.

      ‘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 08:20:36 AM PDT

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