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KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.

May is Lyme Disease Awareness month, and I asked for this May Day as a shout out about our past series and about the DK4 Lyme Disease Awareness group which will begin publishing tomorrow.

I am not a scientist and I do not play one on TV, but I embrace science with both its answers and its potential (and sometimes actual) limitations.  I am writing this particular piece for a support group format – I will not be footnoting or using jargon above my pay grade or education.  I’m talking about my experience, and I will ask here for some level of civility in comments.

There is a great love of science on DailyKos, and it is a defining and integral component of who we are collectively.  In general, I love that.  I love that a diary with photo of a polar bear floating on a small patch of ice would likely have tags from nearly all of us which include ‘global warming’ and ‘fossil fuels.’  

Science has quite clearly and magnificently made my life possible.  It’s unclear whether my mitral valve prolapsed was due to rheumatic fever as a toddler or whether it is congenital.  I appear to have polycystic kidney disease (although we have no known family history), and if memory serves, about a third of PKD patients have serious mitral issues.  But having had four replacements of that valve, two of them emergent surgeries, I am fully and completely aware of the debt I owe science for my life, and I am in awe of that gift.

Science = Power, the power to understand, to grow, and to change.  Science is the very stuff of life.  Science is undeniably reliable… right up to the point of paradigm shift when society discovers that in fact the earth has more dimensions than two.  One need not be a Hegelian devotee to observe thesis transformed, spawning synthesis through negation of what we have known to be truth.

In our love of science on this site, how is it that we armchair Darwinians sometimes forget how integral evolution is to science?  Today’s anecdote is quite literally the inspiration for tomorrow’s double-blind study which will become peer-reviewed and published at some point in the next decade.

It’s important to me that we do not forget this – that anecdotes do not explain things on their own, but they DO have an important place in scientific theory as the font of inspiration and discovery.  Scientific breakthroughs all begin with an anecdote.

Two years ago this month, I awoke in the middle of the night and could not return to sleep.  That May was the first Lyme Disease Awareness series here.  I went in search of my Kos friends and saw a compelling diary on the rec list with HuffPo in the title and I opened it.  I was entirely unprepared to see that this piece – which ended up staying on the list for about two days – this piece was only tangentially about science on HuffPo, what it was, was a scathing indictment of something I had published the previous day about Lyme - the point of it was that I had blasphemed 'science.'   I had written about the politics of Lyme disease – a bacterial infection I had just learned I had after five years of disability.  I had seen two dozen doctors before one finally recognized classic signs of Lyme in my cognitive dysfunction and issues with my central nervous system.

Three or four of us had published a couple handfuls of diaries that month, and this one I had just written had apparently been rescued after I had gone to sleep, and it had had its own short run on the rec list.  That brief highlighting had triggered the response diary which stayed on the list through my birthday.  It was a cold start to my new year.  After a half a decade of extreme, debilitating illness which doctors had repeatedly told me was all in my head, I learned that I had a bacterial infection.  CDC discussion of epidemiological reporting of this disease indicates that they believe this infection is under-reported and is likely 6 to 12 times more prevalent than tests indicate.  This is an informal diary, and I am not going to pull up the most recent published results, but they were approaching 30,000 new infections annually, so do your own math on that.  There’s a lot of this shit going around.  Apparently, very few of us ever see the distinct rash which is a known indicator of this infection.

I am purposefully not linking the diaries I mentioned above – they are history and they are not the point exactly.  The point for me is this:  I am not a scientist and I do not pretend to be.  But not being a scientist does not mean that my observations and experiences of my physical, cognitive and mental being are not legitimate.

I had a bacterial infection for at least five years which wreaked such extreme havoc in my life that I was no longer able to work.

Damn, now I must explain that  this is not just lack of moral fiber which takes me out of the workplace.  I have a history of pulling myself back from extraordinary physical crisis and have had the fortitude to overcome congestive heart failure (due to insufficient anticoagulation during pregnancy, thank you very much A***a insurance for denying what my doctor’s orders for the pregnancy) having formed centimeter thick clots over each side of my mechanical heart valve.  CHF led to ventricular fibrillation which was resolved by an emergency redo valvuloplasty (my fourth valve surgery).   Another time, internal hemorrhaging led to abdominal compartment syndrome and respiratory arrest.  My medical records indicate that trauma surgery released roughly three liters of leaked blood and that subsequently I had several heart attacks, apparently from too little fluid left in my circulatory system.

I’ve been through a lot and recovered from it.  I know how to set mind and body in motion to get from immobilized to back in the world.  I am not proud to say that my greatest accomplishments in life have been just staying alive, but that’s been reality for me.  And living with Lyme disease has been every bit as debilitating as the worst I have gone through from other etiologies science regards as substantial.

I understand that my life is merely a series of anecdotes as far as science is concerned, but that does not make what I have been through any less real or substantial.   We have imaged white matter disease and encephalopathy going on in my brain, stuff that really ought not to show up in someone in her late 30s when that was found.  But dots did not get connected.  My cognitive decline and seizures and falling and neuropathy and dysautonomia were not considered as connected.   I was told I was depressed.  I should just get over it.  My near constant dizziness was apparently seen as an indicator of moral failure.

If one looks to the medical literature, all of these things have been found and documented in people who have a particular bacterial infection which I have.  I WAS depressed, but it was secondary to an infection which crosses the blood/brain barrier.  According to the CDC, it’s an infection which is more than a little common, so it’s extremely confusing to me that having common symptoms of a common disease did not lead to my being tested for that disease for five years.

I am extremely fortunate.  My earlier cardiac debacle led to my receiving Social Security Disability which comes with access to Medicare when you serve sufficient time.  It actually wasn’t the nearly dying repeatedly cardiac thang which got me covered, it was the cognitive interference which likely arose from stroke-like events during surgery or physical crisis leading up to them.  We know there were stretches of anoxia, for instance.  So in spite of my having lost my ability to work and my health insurance from the workforce, I had regular, continued medical care through Medicare, and I was seen at a nationally respected medical center which U.S. News apparently deemed ‘Best in the West’ at some point because it was written on all of the elevator doors.

“The best” doctors were telling me I wasn’t sick, but the fact was that I had a very common bacterial infection for which they never checked.  That same science which had saved my life repeatedly let me down in this instance, and did so with a flourish, telling me I was imagining things and refusing to take responsibility for my health and healing.

Would you agree that if all which is knowable were already known this minute, life would be quite boring?  It is our quest for new knowledge and new understandings which keep us vibrant.  Science is alive and growing and there is more to be understood about the world both inside and outside of us.  I promise you that more will come to light about Lyme.  I mean that about the long-term future.  In the short-term future, it’s possible that a person reading the Lyme Disease Awareness series this month will come away with a tidbit of information which may seem interesting or useful.

I am only partially responsible for this result, but it is a point of pride for me that three readers of the past Lyme awareness series recognized their own symptoms in what was written and were tested for Lyme and found positive.    That’s a mark of a real community:  people here learn from one another and help each other along their paths.  I’ve been greatly educated and blessed by fellow Kossacks, and I do my utmost to pay that forward.

I’ve written this to ask the indulgence of the Daily Kos community.  Today starts Lyme Disease Awareness month, and I’d like you to pay attention, please, because there are many who claim we are living through an as yet unrecognized epidemic.   I ask that you take a look at our offerings and that you indulge us by bringing an open mind – at some point, a paradigm shift will be noted as the science of Lyme is better understood.  We assure you that the science about this shifty corkscrew of a bug (a cousin to syphilis) is not yet definitive:  We know that both from our experience of living with these critters in us and from the published science.  

The series of diaries for this year starts tomorrow with one by Stranded Wind.  Please join us.

Happy Lyme Disease Awareness Month, Damnit :-)

Originally posted to KosAbility on Sun May 01, 2011 at 02:02 PM PDT.

Also republished by Lyme Disease Awareness.

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Comment Preferences

  •  Moderator's Note (25+ / 0-)

    Upcoming Sunday Diaries

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  •  MsGrin, you have been through a lot. (23+ / 0-)

    Thank you for your diary -- I'll look forward to learning more about Lyme Disease

    Are there differences, do you know, in how Lyme Disease manifests in men vs. women?

  •  working on mine (13+ / 0-)

     I am working on mine - got caught up in some stuff this afternoon, maybe ready in an hour? What do I do with it?

  •  Lyme is a bitch of a DX... (14+ / 0-)

    I wouldn't wish it on my worst enemy.

    Health care should not be a privilege for the few, but a human right for all.

    by Pris from LA on Sun May 01, 2011 at 02:16:16 PM PDT

  •  You raise critical points, my friend (22+ / 0-)

    I have often said some version of these words to both patients and readers:

    You may have the best medical team in the world, but YOU are the world's leading expert on your body. If your providers do not listen to you closely, if they do not ask you detailed questions and pay close attention to your answers, fire them.  

    By the same token, let me add my support to your request that the community read your May series with an open mind.

  •  Congratulations on receiving SS Disability (9+ / 0-)

    the bar to be considered disabled continues to be moved higher and higher.  As it is now, it seems dying is about the only way the ALJ will consider you as disabled.

    For armchair Darwinists with Creationist relatives friends and neighbors, ask them if a mule and horse share a common ancestor and then ask them why the progeny cannot reproduce while coyotes and wolves cross with the fertile progeny of red wolves.

    For more fun ask them if a fox and dog share a common ancestor, If so why can they not breed like the horse and donkey or coyote and wolf.  Since they renounce Mendel and Linnaeus along with Darwin, they can only fall back on their explanation of "kinds" which is biblical but insufficient to explain the genetics at work in the examples.

    They refuse to accept the first Darwinist was the first herdsman.    

    •  Naw, if you're dead you don't qualify, I think... (8+ / 0-)

      ...but you DO have to look pretty close to it.

      I spent a lot of time reading the regs before I made my first SSDI appeal, but it wasn't the stuff that kept almost killing me which got me covered, it was that my brain was only working at half speed.  That surprised me.

      For those applying, get to know the Social Security Blue Book - the answers are all in there if you read between the lines.

      ‘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 01, 2011 at 02:35:37 PM PDT

      [ Parent ]

  •  Couple of questions, MsGrin (14+ / 0-)

    For those of us who are on the learning curve, how is a diagnosis arrived at? Is it still a matter of eliminating all other possibilities, or is there a lab test available?

    What is the current thinking on treatment, for both acute and chronic presentations?

    Is Lyme Disease solely tick-borne? (That may be a really, really stupid question, but it popped into my head. Heh.)

    •  I too, am interested in this. Years ago, as a (12+ / 0-)

      volunteer at Mammoth Caves National Park I received a tick bite that presented the classic bull's eye of a Lyme Disease bite.  It was photographed and sent to the regional safety officer of the US Park Service who provided treatment via a local doc who didn't believe in Lyme Disease in Kentucky but gave me a course of antibiotics "just in case."  

      Other park service maintenance workers had received LD diagnosis and were struggling with rheumatoid arthritis.  I have osteoarthritis that started early and causes pain, but as yet no serious cognitive issues.

      As a bacterial infection, shouldn't it respond to antibiotics, regardless of acute or chronic status?

      •  there are lab tests, but they are notoriously (8+ / 0-)

        unreliable. The screening test ELISA has a 55% error rate, according to one study done of hundreds of labs.

        So, if you get a positive test result on the ELISA you're just lucky. And it could be as wrong as a negative.

        I usually tell people to demand a simultaneous Western Blot. If done by a doc used to this stuff, they'll order it from a lab which will report to them the results for the individual "bands".

        Still, it is primarily a clinical diagnosis and ruling out other things is often a long part of the process.

      •  Only if you're given the right antibiotics (7+ / 0-)

        And the problem is that so little research has been done over the decades that there is no reliable standard treatment protocol that works in all cases. Some people respond really well to Doxycycline, but for other people it does little.

        There needs to be a lot more research.

         

        "'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 01, 2011 at 03:18:28 PM PDT

        [ Parent ]

      •  The Lyme bacteria (5+ / 0-)

        has the ability to encyst, putting it into a form immune from antibiotics. Lots of bacteria do this, going into a cyst form to weather unfavorable living conditions. Then, when the "coast is clear" they return to their regular form.

        This is part of what makes treating chronic Lyme such a challenge.  One of the treatment regimes that has had some success for chronic Lyme sufferers is "pulse" therapy, going on an antibiotic for 3 weeks, then off, then on, then off, until symptoms dissipate.

        Inconceivable! You keep using that word. I do not think it means what you think it means.

        by hopeful on Mon May 02, 2011 at 04:05:06 AM PDT

        [ Parent ]

        •  Yes, those tricky b*stards! (3+ / 0-)

          In addition to the pulsing technique you mentioned, certain antibiotics (like Flagyl) are known to break and kill the cysts so at some point in the therapy most lyme patients take a course of this. There's another antibiotic that busts cysts, starts with a "t" but I can't remember the name.

          Has anybody mentioned biofilms yet? A further difficulty with borrelia (and some other bacteria are good at this too, like strep) is they construct protective covers for themselves utilizing the fibrinogen in your blood. In fact, it seems that a lyme infection increases your fibrinogen (clotting factor, causing hypercoagulation) and this benefits the bacteria greatly. The patient can treat this with blood thinners like heparin or certain enzymes. Breaking up the biofilms puts more bacteria out in the open bloodstream where the antibiotics and/or your immune system can get at them.

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

          by sillia on Mon May 02, 2011 at 06:34:00 AM PDT

          [ Parent ]

          •  I've heard of biofilms and (4+ / 0-)

            their use in Lyme, but know very little about them. Thanks for this info.

            Inconceivable! You keep using that word. I do not think it means what you think it means.

            by hopeful on Mon May 02, 2011 at 06:51:32 AM PDT

            [ Parent ]

            •  It's a relatively new area (3+ / 0-)

              cutting edge, I guess. Lyme doctors are still learning how to treat for it.

              My LLMD tests for hyercoagulation and finds that most of his patients have it. For those with severe hyperc., heparin makes a big difference in their symptoms and treatment. In my case, the hyperc. was borderline high, so heparin not justified. Instead I take an enzyme, Boluoke lumbrokinase, which research shows is very effective in reducing fibrinogen.

              Also there are other factors that can break up biofilms, as I said this is somewhat new territory.

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

              by sillia on Mon May 02, 2011 at 08:05:31 AM PDT

              [ Parent ]

              •  I need to know more about this (3+ / 0-)

                If I forget to ask you, please remind me.  Coaguluation issues have been quite critical for both my mother and me.  It's nearly killed me a couple times.

                ‘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 Mon May 02, 2011 at 08:34:46 AM PDT

                [ Parent ]

          •  I am guessing that you are thinking either (4+ / 0-)

            of Bactrim (Trimethoprim-sulfamethoxazole) or atovaquone, used to kill cysts in Toxoplasmosis cases.

            Inconceivable! You keep using that word. I do not think it means what you think it means.

            by hopeful on Mon May 02, 2011 at 06:54:15 AM PDT

            [ Parent ]

            •  Atovaquone = Mepron (4+ / 0-)

              It's also used to treat Babesia. I began to see a lot of improvement after taking Mepron and Biaxin.

              •  Mepron is on my list (3+ / 0-)

                to take next, once I finish what I'm on now. I do think it's possible I have babesia, I have some of the symptoms (darn night sweats).

                I made a lot of progress on Biaxin with Plaquenil.

                I have to say again for those new to this, each patient/case is different and you really need an experienced Lyme expert to treat you, who is also very good at listening to you and paying attention to your particular symptoms and progress.

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

                by sillia on Mon May 02, 2011 at 08:15:05 AM PDT

                [ Parent ]

                •  Good luck with the Mepron (4+ / 0-)

                  I agree that every case is different and tickborne disease is not something one should be self-treating - a qualified doctor needs to monitor patients and make sure their liver enzyme levels, kidney panel, etc. are okay during the course of treatment, as well as monitor response to medication in terms of progress and side effects.

                  My own self-reporting of Mepron is that I did see a leap in improvement since taking it - it has helped me write as much as I've been writing.  I could not have done as well before Mepron treatment. I had both symptoms of Babesia as well as a positive blood smear for it, so I knew it was something I'd need to tackle.

                  My Babesiosis symptoms (as well as potentially anything else atovaquone might hit) involved chills more than sweats, a lot of chest pressure and pain over my heart, palpitations, fevers, digestive problems, and a few other things. I kept thinking I was getting a heart attack at points, which was scary. Babesia is nothing to toy around with. It can be very serious and I wish more family doctors recognized it upfront.

                  •  That is very encouraging! (3+ / 0-)

                    Thanks for that report. I am keeping a positive outlook.

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

                    by sillia on Mon May 02, 2011 at 08:56:52 AM PDT

                    [ Parent ]

                    •  Good to stay positive (3+ / 0-)
                      Recommended by:
                      42, KelleyRN2, MsGrin

                      I wish you luck with your treatment. My main words of caution are this to you, sillia:

                      1) Make sure your doctor is running a regular liver enzyme panel test on you along with a CBC every 2-3 weeks. Mepron can be very hard on the liver. I had to stop because I began getting nauseated and throwing up and couldn't keep anything down after months of not having a problem. Turned out my liver said enough, and it was reflected in tests.

                      2) If you get psychological side effects of serious depression, apathy, paranoia and/or hallucinations, it's the Mepron. A number of antimalarial drugs have these side effects and Mepron has it, too. Often if you stop the drug for a week or two and restart, the second time around these symptoms are milder or nonexistent. Whatever happens, if you experience something psychologically out of the norm, tell your doctor right away. You may need to adjust dosage instead of stopping.

                      Disclaimer: I am not a doctor, the above is informational and intended only as information not medical advice.

                  •  the heart attack thing... (4+ / 0-)

                    those are really scary.

                    •  I hate it. (4+ / 0-)

                      I really do, and it's responsible for a number of ER visits.

                      To their credit, ER staff would run an EKG most of the time and give me blood tests to make sure I wasn't having a cardiac event.

                      But only once did it lead to putting me on extended observation. Most of the time they couldn't tell me what happened and a few visits I was told it was stress or a panic attack. That was annoying, because I wasn't feeling panicked when it started. I was feeling severe pain.

            •  I was thinking of Tindamax (4+ / 0-)

              (tinidazole) which is sometimes given to patients who can't tolerate Flagyl (metronidazole).

              However Bactrim is certainly used in Lyme treatment so you may be right on that. There are so many different aspects (and possibly different organisms) involved in a Lyme & Co. infection that a wide array of abx are used...ideally in a clever enough way to zap the bugs coming and going.

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

              by sillia on Mon May 02, 2011 at 08:09:56 AM PDT

              [ Parent ]

              •  My husband has (5+ / 0-)

                Lyme and he has been on any number of abx, including Biaxin. Currently he's just on Doxy, but he needs to see a LLMD sometime soon, so that may change. He wants to try pulse therapy.

                Inconceivable! You keep using that word. I do not think it means what you think it means.

                by hopeful on Mon May 02, 2011 at 08:33:13 AM PDT

                [ Parent ]

                •  definitely the LLMD is best (5+ / 0-)

                  Treating this is very complex, and you want somebody with a lot of experience curing people! Not just randomly firing abx. That said, Biaxin is a very good one (lots of Lyme patients get improvement with it) and Doxy is standard treatment and can give you a lot of benefits--it's pretty good at crossing the blood-brain barrier which is what you want.

                  I'm sure he's been told to watch out for sun exposure and by all means wear sunglasses outdoors. My eyes were sensitive anyway from the Lyme but the Doxy made them more so and I suffered a lot of eye pain. I finally had to switch away from the Doxy because of eye pain. Also be very careful of tummy issues, take with food, take probiotics, etc, etc.--I'm sure you know the drill! :-)

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

                  by sillia on Mon May 02, 2011 at 08:54:04 AM PDT

                  [ Parent ]

    •  As I understand it (7+ / 0-)

      there is a blood test, but the test isn't 100% reliable, as other conditions can cause a false positive result. So it'd make sense that' it'd be a combination of 1) elimination of other conditions, 2) accessing risk of exposure and 2) any positive indicators, which may include the blood test

    •  These questions will be addressed in the series (13+ / 0-)

      which is not a way of my trying to blow smoke, but they are complicated.  We have an excellent piece on Lyme tests for next week that I'm very excited about.

      Of course, a phyisician has to suspect Lyme to begin with, and that's fairly uncommon.  In my case, my dysautonomia was causing weird blood pressure issues and we weren't sure if that was causing my dizziness or not (likely it contributed to it but wasn't the direct cause).  We had to rule out all my cardiac issues and renal ones... Lyme and co-infections tend to have multiple presentations and they tend to mimic other conditions and diseases.  The short answer is that there is a two-part test (ELISA and Western Blot), but they are old, have high error rates and this system was designed for epidemiological record-keeping rather than as a definitive diagnostic tool.  I can tell you for sure that there is no test to demonstrate that a person is no longer infected, and that is a very important point in the political fights over the disease.

      Let me leave aside the treatment question for the moment - it's the most controversial and I do not want to have a food fight start here.  I'll just say that most people require antibiotics and that it's equally important to rebuild the immune system and to have a physician who is good at knowing how those processes work for Lyme patients.  Initially, one gets much, much, much sicker for awhile on abx if they have been sick for a long time.  The bugs make themselves at home and tend to fly under the immune system radar for creating antibodies.  Abx begins killing the bugs in droves and the body has a difficult time cleaning up that mess and if feels mentally and physically like the floors have fallen out.

      Your last question is also difficult and controversial.  It is certainly the largest vector-borne disease in the country.  There are questions about whether other creatures besides ticks can carry and transmit Lyme - I suspect that is not definitively understood yet.  My big question has been whether it's in the blood supply since I can count having received over 80 units of blood in my various traumas.  I know they do not test for it.

      The Lyme spirochete is a close cousin to syphilis, so most of us with Lyme imagine that at some point it will be documented that it is sexually transmittable.  There have been cases which seem to show this happens, but it is not accepted as a means of transmission currently.  There are a good number of cases where is it shown to have been transmitted in utero, again, a fact which is hotly contested.

      I do not mean to be cagey, but these are all questions which are being fought about currently.

      I hate having a disease which is so political.  I just want to finish getting better.

      ‘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 01, 2011 at 02:54:26 PM PDT

      [ Parent ]

      •  That was a spectacular post, Ms Grin. (7+ / 0-)

        Seriously well said and presented.

        "'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 01, 2011 at 03:21:01 PM PDT

        [ Parent ]

      •  Why is the in utero transmission contested? (3+ / 0-)

        Yale has its own records on in utero transmission and there are other cases on record for individual patients. The infection is spread via the blood and then disseminates into collagenous tissues. I didn't think in utero transmission was up for debate.

        •  the problem with (4+ / 0-)

          most infections occurring in families is that they share a common environment. If a child, even a very young one, suffers from Lyme, whose to say it wasn't from a tick bite?

          I am not familiar with the in utero studies, but this is a major problem with the sexual transmission issue.

          Inconceivable! You keep using that word. I do not think it means what you think it means.

          by hopeful on Mon May 02, 2011 at 04:07:48 AM PDT

          [ Parent ]

          •  in utero is more easily proven than sexual (4+ / 0-)

            I understand that it's harder to prove sexual transmission takes place because adults can be bitten by ticks just through circumstance - hiking in the same park, having a cat who brings ticks into the house, etc.

            With the in utero cases I thought there was no dispute - even the IDSA Lyme guidelines panel has some in utero records on their hands. Their statement in their own research publications has been it's rare (I keep hearing this 'rare', too, and do not think it means what they think it means) but it happens.

            When a baby dies shortly after childbirth because of infection or shows clear signs of advanced infection very soon after, and the mother is found to also be infected with Lyme disease (if its typed and found to be the same strain - this is pretty indisputable) then it has to be an in utero transmission case.

            •  new vs old infection (2+ / 0-)
              Recommended by:
              KelleyRN2, MsGrin

              My Lyme friend's perinatologist acknowledges that a new Lyme infection can be dangerous if not treated, but feels that an older treated infection would be no big deal- not a big believer in persistent Lyme- since the standard course of abx. had already been given.  

              My friend isn't taking any chances though, and refuses to budge on the issue.

        •  I can't tell you 'why' it is contested, (4+ / 0-)

          but one of the anti-Lyme docs in Under Our Skin unequivocally states that Lyme is NOT transmitted in utero nor is advance neurologicial Lyme found in children.

          ‘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 Mon May 02, 2011 at 08:39:17 AM PDT

          [ Parent ]

          •  Yes, I saw that in the movie. (4+ / 0-)

            I believe that was Dr. Eugene Shapiro, if I'm not mistaken. And he's lying. The case studies can be found in the library and online. It might be easier to find them in printed publications than online - unless you have access to paid subscription journals (which university students and staff do).

            I often wish that there could be a fund or organization set up so that Lyme patients could have greater access to research online that would otherwise cost $20-$80 per research paper without an annual ($200 or more) subscription to these journals. It's our own suffering and the illness has already cost us so much, I would like to see a compassionate use clause.

            •  I was on a panel with a woman who knows that (4+ / 0-)

              she passed Lyme in utero. She had at least one autopsy of a miscarriaged fetus.

              Still, when her successful birth resulted in a child with Lyme, the docs try to tell that she couldn't have gotten it in utero.

              It's this willing denial of clear evidence that frustrates me more than anything and can cause me to lean into the "conspiracy" wind.

            •  Yeah (3+ / 0-)

              it was either Shapiro or Wormser, but my copies of the film are loaned out just now.

              I try really hard to not call that spade a spade here, even if it's what I believe in my heart of hearts.  I believe consciousness WILL be tipped here to follow what science is actually uncovering.  I do not understand the cult of believing what has been demonstrated to be disproved, but I see that misbeliefs are very, very tightly held.  To me, continued belief in the face of opposing evidence must be due to religion or politics.

              ‘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 Mon May 02, 2011 at 01:04:53 PM PDT

              [ Parent ]

              •  Some citations on transplacental transmission (4+ / 0-)

                Schlesinger P, Duray P, Burke B, Steere A, Stillman A. Maternal-fetal transmission of the Lyme disease spirochete Borrelia burgdorferi. Annals of Internal Med. 1985:(Vol 103) 67-68.

                Markowitz LE, Steere AC, Benach JL, Slade JD, Broome CV.  Lyme disease during pregnancy. JAMA. 1986 Jun 27;255(24):3394-6.

                Lavoie PE;Lattner BP;Duray PH; Barbour AG; Johnson HC.
                Culture positive seronegative transplacental Lyme borreliosis infant mortality. Arthritis Rheum 1987; Volume 30, Number 4, 3(Suppl):S50.

                Weber K et al. B. burgdorferi in a newborn despite oral
                penicillin for Lyme during pregnancy. Pediatr Infect Dis J.
                1988 Apr;7(4):286-9.

                Figueroa R, Bracero LA, Aguero-Rosenfeld M, Beneck D, Coleman J, Schwartz I. Confirmation of Borrelia burgdorferi spirochetes by polymerase chain reaction in placentas of women with reactive serology for Lyme antibodies. Gynecol Obstet Invest. 1996;41(4):240-3.

                Trevisan G et al. Neonatal skin lesions due to a
                spirochetal infection: a case of congenital Lyme borreliosis borreliosis? Int J Dermatol. 1997 Sep;36(9):677-80.

                Walsh CA, Mayer EW, Baxi LV. Lyme disease in pregnancy: case report and review of the literature. Obstet Gynecol Surv. 2007 Jan;62(1):41-50.

                These are just a few studies I found in a few minutes. Unfortunately, I can't copy and paste the content of many of them because they are paid subscription access only.

                That last one - I believe Walsh presented for ILADS at one point, but would have to double check that. The summary of that paper?

                "After completion of this article, the reader should be able to recall that Lyme disease is not an uncommon disease during pregnancy and can occur in states outside of the Northeast, explain that the diagnosis is made clinically and may be confirmed by laboratory tests, state that treatment is recommended during pregnancy, and summarize that there is no consistent data of adverse fetal effects even though the placenta is infected."

                The consensus thus far is that relapsing fever Borrelia transmission in utero is common, but in Borrelia burgdorferi or Lyme disease, transmission in utero happens but it is rare.

                How rare is something I'd like to know. But it does happen. Saying it has never happened means denying these studies exist - even if most of them are dated. If I spent more time looking, perhaps I'd find more recent cases.

                Also, the statements made thus far is that there isn't enough conclusive evidence to say that gestational Lyme disease leads to negative outcomes for the fetus.

                How many publications are out there like this one and how did they conduct their research?:

                Lakos A. [Lyme borreliosis--experience of the last 25 years in Hungary]. Orv Hetil. 2009 Apr 19;150(16):725-32.

                Quote from abstract: "We studied the pregnancy outcome of borrelia infected mothers and provided that untreated borrelia infection is associated with higher chance of adverse pregnancy outcome."

                A question I have: If there are complications in childbirth, how often do doctors look for tickborne infections as a cause? Just as in death, if someone has heart problems, I'm not sure how often Lyme disease is listed on a death certificate if it led to conditions which produced a heart attack. The cause of death is the end point: heart attack.

            •  Camp Other (4+ / 0-)

              What a great idea! I'll add that to my to-do list when I hit the lottery.

              •  Good to know (3+ / 0-)

                I appreciate your thoughtfulness if you ever happen to win.

                Seriously, though, is this something that is fair to ask for of an existing Lyme advocacy group or organization for chronically ill and disabled people?

                For all I know, I'd be reinventing the wheel and maybe someone out there is already doing this. It's been one of my embarrassments in life to propose an idea only to be told it's been done already or someone is in the process of doing it.

                Hey, it's okay - I don't need to take credit for an idea. And I'd rather know someone is doing good work rather than making trouble.

    •  There are a number of ways (8+ / 0-)

      but usually you have to already be aware you have the disease in order to be diagnosed. (The general medical take on lyme in my area is "there's not a lot of lyme up here...")

      A knowledgeable MD can diagnose on the symptoms, even if there is no rash. I actually know a couple of people who had the good luck to have this happen. The CDC guidelines indicate this is the way to go. Most doctors, in my experience, are not knowledgeable enough about lyme to do this.

      Lyme can sometimes be diagnosed via blood tests, but the standard tests are broken to shit for reasons I won't go into right now, and most doctors will run an ELISA, rather than a western blot anyway, which is worse than useless.

      That leaves having blood tests by a lab that specializes in tick-borne illness. (I always send people to www.igenex.com, though there are other labs.) In general, you have to have educated yourself enough about lyme, and suspect having it before you reach the point of forcing your Dr. to draw the blood for the specialty lab. (And even should you get a positive, the odds are you won't be properly treated.)

      Yes, I'm a little cynical about the chances of someone being properly diagnosed, but those are the general outlines.

      "'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 01, 2011 at 03:01:44 PM PDT

      [ Parent ]

      •  Thanks, Wheever! One more question, please, as (7+ / 0-)

        the KosAbility community should know these basics:

        What are the initial signs and symptoms of Lyme, esp. for people who are not aware of having been bitten by a tick? Is there something about the disease in its earliest stages that distinguishes it from most other acute illnesses?

        •  It generally presents like flu (6+ / 0-)

          that doesn't go away.  Some people get the bulls-eye rash (that's considered a clear indication of the infection by most).  My first noticed sign of it we have discerned looking back to when we think I was infected is a very rare symptom, sudden, massive hearing loss in my left ear.  It began coming back (mostly - still distorted) after about 4 months.  Unfortunately, I was treated for it with a weekend of IV steroids which is now known to disseminate the spirochetes throughout the brain.  But they thought what I had then was a virus...

          I did not become disabled by Lyme for a full decade after that.

          ‘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 01, 2011 at 03:17:55 PM PDT

          [ Parent ]

        •  It varies so greatly that it's hard to state (10+ / 0-)

          succinctly.

          After the "flu-like" symptoms (never clearly defined in ANYTHING I've ever read) there is a general and increasing sense of illness, involving muscle aches, "brain fog," exhaustion and very often GI problems. Eventually will follow the inexplicable pain--both specifically located and seemingly diffused throughout the body--often "diagnosed" as Fibro. IBS and CFS are often other "diagnoses." In my opinion, anyone diagnosed with CFS, Fibro or IBS should be tested for lyme, and if you have all 3, those just ARE the symptoms of Lyme.

          As the disease progresses you end up with a "constellation" of neurological symptoms that vary widely, but often include sudden and intractable sleep disturbance, cognitive breakdown, dizziness, loss of coordination, vision problems and memory loss. Also hearing disturbance or loss, anomalies in smell and taste...the list goes on and on. Like syphilis, lyme invades and effects every system in the body.

          Sorry I couldn't sum it up more clearly.

          "'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 01, 2011 at 03:49:10 PM PDT

          [ Parent ]

    •  no such thing as a stupid question (7+ / 0-)

      There are 2 cases of mosquito transmitted Lyme Disease reported in peer reviewed medical journals. One case was in Connecticut, the other in Russia.

      There have been anecdotal reports of mosquitoes, biting flies as well as fleas transmitting Lyme Disease.

  •  Beautifully written, Ms. McGrin. Thank you (15+ / 0-)

    so much for such wonderful beginning to Lyme Disease Awareness Month.

  •  The thing is if you research the literature (16+ / 0-)

    and learn what the amazing Bb spirochete is capable of it tends to wipe out any arguments from those stuck in the ideological swamp of big business.  

    When you hear of the research at UC Davis a couple of years ago with Barthold and find that "cured" mice could still transmit spirochetes to other "clean" mice it should wake up the scientist in everyone.

    We have crappy tests based on our immune system responses rather than direct testing for the organism.    And  Bb is a master of disguise that allows it to avoid destruction by antibiotics and our immune system.

    We don't understand ANYTHING yet about the pathophysiology (what it does and how it does it in our body)...because we can't even test accurately for the presence or absence of the spirochete.  It is a mess!  It gets me riled up a bit.

    My diary on the spirochete will be hopefully be played in this series on Wednesday.  

    "I think it is much more interesting to live not knowing than to have answers that might be wrong." Richard Feynman

    by leema on Sun May 01, 2011 at 02:40:42 PM PDT

  •  Thank you. Know so many people who suffer from (12+ / 0-)

    Lyme's, it is horrible.  I'm getting so I don't want to go outside.  I just finished our adopt-a-highway road clean up.  It is 35 degrees out, and has been snowing/drizzling all day.  Look at the dog-deer tick on his head.  Start to check my clothes-find 3 of them.  It is 35 degrees out!  If i was not so freaked out, i'd be amazed...

    Hetty Green queen of supply-side bonhomie bone-drab If you know what I mean On the road It's well-advised to follow your own path In the year of the chewable Ambien tab tHE dECEMBERISTS

    by bongojazz on Sun May 01, 2011 at 02:46:22 PM PDT

  •  question (6+ / 0-)

    would you get false positives on the syphillis screen then if there is similarity to they syphillis bug?

    i think it is sometimes called the vdrl

    •  Please ask this again next week (6+ / 0-)

      in the diary on testing because the author will likely know.  Here's another anecdote for you, though - my last Lyme test was still positive (after several months of abx), and I did recently do a syphilis test which came out negative.

      ‘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 01, 2011 at 03:10:38 PM PDT

      [ Parent ]

  •  Relative was bit in 'Lyme scarce' part of US (7+ / 0-)

    by 'something' and then a bulls-eye rash developed. Boyfriend said it was nothing. When I saw it. Yikes!
    It was a classic bullseye and not to be confused with ringworm rash. Many images online for both.

    Even though the doctors probably thought I was over- reacting a bit... I have read the stories, here and elsewhere, that sufferers have posted and know what a crappy experience Lyme can be.
     We got antibiotic prescribed and insisted they order a blood titre (even though it was probably done too soon...around 2 1/2 weeks after bite).
    We will follow up with another titre in a few months even without symptoms and even if we have to pay.

    Had relative take a good picture of the rash.
    I am gunshy dealing with our insurer and anticipate the worst situation with them. It complicates things but I have had serious problems with BC/BS on two other matters with family members(large employer is self-insured which is a big part of the problem).

    Thankfully no symptoms and we hope for the best but educate ourselves on the worst.
    Is there anything else that we should do?
    What does the Lyme Disease community suggest for timing of second blood titre.
    Thanks in advance and I look forward to more diaries on this topic this month.

    •  The Lyme Community here, such as it is (8+ / 0-)

      would not make such a recommendation... most of us are not medical professionals.

      I can tell you this, however...

      The ELISA has three possible results, negative, positive and not clear.  I got the third result.  Since the doctor who ordered the test is familiar with how these things go, she ordered Doxy for me ahead of doing the Western Blot.

      I could not FATHOM I had Lyme when she tested me and was sure it was not the case.  But the Doxy triggered what they call a Herximer response in me with the bugs dying off, and it was clear something major was happening in me.  This strategy is considered a 'challenge,' and it wakes irritates the bugs which have been co-existing parasitically unnoticed.  They stir around and the immune system notices them and begins creating antibodies which then show up on the test.

      My Western Blot was subsequently CDC positive.

      ‘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 01, 2011 at 03:25:36 PM PDT

      [ Parent ]

    •  Unfortunately (8+ / 0-)

      receiving antibiotics can abrogate an antibody response, and a second titre may not show up anything - even if there is an active infection.  Your best course of action is to make note and track any possible symptoms and see a doctor well versed in Lyme.

  •  Different strains of lyme (11+ / 0-)
    Apparently, very few of us ever see the distinct rash which is a known indicator of this infection.

    In Europe it is well known that there are different strains of Lyme with differing symptom profiles. Here in the good old USA we deny that, claiming we only have B. Burgdorferi.

    The strain that causes the rash--most likely B. Burgdorferi itself, which was the first strain isolated as being the cause of Lyme disease--is the easiest strain to diagnose and treat.

    Those of us that catch different strains never have a rash at all. Lucky us.

    "'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 01, 2011 at 03:09:01 PM PDT

  •  Thank you for this diary. I have a (12+ / 0-)

    friend who was diagnosed with Lyme disease a number of years ago, and had to wade through a lot of misinformation and lack of medical knowledge before landing with a doc who took her seriously and got her on a real treatment regimen.  

    Before that, she was battling the idea that she was just a hysterical female with psychosomatic problems.  Turned out – surprise! – that this sexist idea was pure blather and she did have a very real health problem.  

    Teach us to listen to sounds larger than our own heartbeat; that endure longer than our own weeping in the dark. - Lillian Smith

    by RadioGirl on Sun May 01, 2011 at 03:22:56 PM PDT

    •  Been there. (10+ / 0-)

      But, since I'm a male, I was "depressed."

      "'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 01, 2011 at 03:55:16 PM PDT

      [ Parent ]

      •  I was "having a psychiatric breakdown". In my (10+ / 0-)

        early 40s with zero history of psychiatric dysfunction, though years of therapy - where I would think it would have been noticed - as I tried to be a better person than my upbringing rendered me.

        Doctor fired.

        •  So we're not quite twins (7+ / 0-)

          I have long experience with depression and understanding it, with the help of some great shrinks. What I was experiencing was not depression. My life was going very, very well. And the fact that everything in my life was going well was--to one fuckwit doctor "evidence" that I was depressed. Fucking What?

          "'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 01, 2011 at 04:07:42 PM PDT

          [ Parent ]

          •  that was what made my doc's "diagnosis" so absurd (6+ / 0-)

            I was very happy with my life at the time. Had finally built the business I had been dreaming of. Was joyfully raising my young daughter. Had a great community of support around me. I felt that all my work to get my life on a better track had finally paid off. I even tried telling myself for months that I was just so profoundly tired because I was overdoing it. I was loving what I was doing. Loving the rhythm of my life.

            I was, in no way, depressed. I certainly wasn't having a psychiatric breakdown.

            It seems we've become twins due to Plethora Borrelliosis, rather than having started off as twins.

            •  I guess it makes us all siblings in the end-nt (2+ / 0-)
              Recommended by:
              MsGrin, DvCM

              "'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 01, 2011 at 07:20:02 PM PDT

              [ Parent ]

            •  not to say that you don't (1+ / 0-)
              Recommended by:
              MsGrin

              have Lyme, but depression is a chemical imbalance and not a reaction to situations. Acute depression can be due to "unhappiness" but chronic depression is different.

              Inconceivable! You keep using that word. I do not think it means what you think it means.

              by hopeful on Mon May 02, 2011 at 04:14:03 AM PDT

              [ Parent ]

          •  Being sick can make me pretty depressed. (6+ / 0-)

            I mean, seriously.

            The doctor's job is to try to rule out all other causes before sending a patient on to a psychiatrist for head meds.

            I'm tired of doctors not doing their jobs.

            I'm fortunate that right now my current primary care physician has at least been supportive of what my LLMD does and tells me to follow my LLMD's instructions around the tickborne related symptoms. But my primary care physician is mainly dealing with my bouts of asthma, ordering MRI's for my deteriorating joints, flus, allergies, and ingrown toenails. Easy and nothing that challenging.

            •  I was told to see a psychiatrist for a cyst on my (3+ / 0-)

              spine.

              I was sent to see a neurologist to be sent for a surgical consult about a cyst which had been imaged.  I had seen this neuro the previous year while trying to understand my increasing dizziness.  She'd apparently marked my chart as a mad-hatter.  She wasn't at all helpful to me, but she did not let on that she thought I was nuts.

              So when I called for a second appointment after the cyst was imaged, I was asked to hold and then told I needed to see a psychiatrist and not a neurologist.  

              They had no idea why I was referred back to them yet when I was scheduling.  This was a second appointment a full year after my first appointment.  I certainly do not recall being at all ruffled at the first appointment or making a stink of any kind - it still baffles me why I was thought to be THAT much of a problem.  

              If I recall (and this is now 8 years ago), I first saw her after I had had such an extraordinary dizzy spell while driving on the 405 in rush hour that I had gone to the ER.  When they hit like this one did, I have no sense of depth perception and cannot focus - they are likely migraine-like but without the pain.  I think they did a CT at the hospital and released me when nothing showed up.  So I imagine I was thought to be vastly over-using medical resources for an imagined issue.  I really do not know.

              She DID agree to see me (only neuro in my HMO), and the surgeon told me that if I left this cyst alone it would likely return the favor.

              ‘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 Mon May 02, 2011 at 08:51:53 AM PDT

              [ Parent ]

            •  There were studies looking (1+ / 0-)
              Recommended by:
              MsGrin

              at depressionb due to Lyme and several other chronic conditions (congestive heart failure was one IIRC).

              The conclusion was that Lyme causes depression in excess of what can occur due to chroinic illness in general.

              Makes sense since LD like nerve tissue.

              Tertiary Syphilis and Chronic Lyme share a lot, including mental illness.

        •  My brother, the first in our family to get LD... (2+ / 0-)
          Recommended by:
          42, MsGrin

          ... has had full blown psychosis during nasty Herxheimer reactions (read the diaries this month to learn more about the Jarisch Herheimer reaction in Syphilis and Lyme)

      •  Sigh. Hugs. And let me (7+ / 0-)

        re-emphasize my commitment to fighting this reductionist diagnosis of both women and men!  

        Teach us to listen to sounds larger than our own heartbeat; that endure longer than our own weeping in the dark. - Lillian Smith

        by RadioGirl on Sun May 01, 2011 at 04:12:33 PM PDT

        [ Parent ]

  •  Global warming (11+ / 0-)

    A Yale study from a couple of years ago says as the planet warms, Lyme disease will spread, particularly into the Upper Midwest.

    Science Daily

    But in the Midwest, where there are greater extremes of temperature, there is a shorter window of opportunity for tick feeding, and therefore a shorter gap between nymphal and larval feedings. Because of this, report the scientists, Midwestern wildlife and ticks are infected with less persistent strains, which correlates with fewer cases of Lyme Disease reported in the Midwest.
    The clear implication of this research, say the researchers, is that, as the planet warms, the Upper Midwest could find itself in the same situation as the Northeast: longer gaps between nymphal and larval feeding, and therefore, stronger, more persistent strains of Lyme Disease.

    It is possible to read the history of this country as one long struggle to extend the liberties established in our Constitution to everyone in America. - Molly Ivins

    by se portland on Sun May 01, 2011 at 03:23:55 PM PDT

  •  Human Anaplasmosis (9+ / 0-)

    Last Fall, I was found to be iwth human anaplasmosis. The Minnesota Department of Health says "It is the second-most common tick-borne disease in Minnesota after Lyme disease."

    I went to the doctor with flu-like symptoms that would not go away. Immediately, she had me take blood tests for what she called a "tick panel".

    I came back positive. I was shocked because I live in a urban area! But I was so glad that she asked me to take those tests. (The blood sample was sent to the Mayo Clinic.)

    I took amoxicillin 875 MG twice a day for 10 days and I got better, but the aches and pains took a few months to go away, and I know now my strength is not the same as before I got the disease.

  •  Thank you for posting this (10+ / 0-)

    Our cousin's wife got Lyme Disease and it triggered Multiple Sclerosis symptoms.   It took forever to get diagnosed and by the time she was diagnosed she basically lost all motor function and died at 41 years old.  My friend was finally diagnosed after a year and a half of suffering and because her insurance would not pay for more than a month of treatment with IV antibiotics (which WERE working) she now has to take pills that cause her extreme nausea, vomiting, and debilitating weakness (and are NOT working very well.)  Lyme is HORRIBLE -- thank you for increasing awareness and making people know that they should go see a doctor if they ever start to feel sick after a trip in the country or an insect bite.  I've sent multiple people to their docs for antibiotics immediately and like to believe that I've helped them avoid what you've been through.

    Progressive politics WILL prevail

    by Former Chicagoan Now Angeleno on Sun May 01, 2011 at 04:13:28 PM PDT

    •  Thank you for this post (6+ / 0-)

      ...it sure helps to get word out when people who are not sick but have witnessed the effects of Lyme speak up about it.  

      Those of it WITH it have bias, of course, and we often have difficulty producing clear language about this experience.  And we're often angry for having been disbelieved and hence undiagnosed and untreated for years on end.

      I'm so very sorry about the loss of your cousin.

      The film Under Our Skin follows a woman with Lyme whose symptoms are quite like MS and it is devastating to watch.  The good news for her is that she got treatment and has stepped back into her life.  Since filming, she recovered sufficiently to head back to study to be a nurse and is now practicing.  There are success stories.  I'm so sorry your cousin isn't among them.

      ‘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 01, 2011 at 04:21:00 PM PDT

      [ Parent ]

    •  so sorry about your cousin's wife. simply tragic. (8+ / 0-)

      I was also told that I had MS at one point. I have a friend who has been battling MS for about 15 years. Only she all these symptoms that they say aren't related to MS. They are all associated with Lyme. I keep telling her to see a Lyme doc, but she keeps plodding along with her doc and she's been deteriorating a lot lately. I'm very worried about her.

      •  ...and of course there's Parkinson's... (6+ / 0-)

        Since we know the summer I was infected, the likely DAY it was was one when my father was visiting me because we went out for a picnic in very tall grasses.

        My dad now has advanced Parkinson's, and with there being so many cases of Lyme misdiagnosed as Parkinson's and my being WITH my father when I was likely infected, well... He did test and told me it came up negative.  But of course many doctor's don't do Western Blot after equivocal ELISA, so I don't know if his all clear was REALLY all clear.  

        I'm not really invited to comment about my father's health, so this question has bothered me.

        ‘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 01, 2011 at 04:36:13 PM PDT

        [ Parent ]

  •  MsGrin have you seen any info from Tom Grier? (5+ / 0-)

    Presentations are called Lyme on the Brain...might have missed it in a previous post.  Anyway this is the easiest link i could find.  He spoke in my hometown last year...has been all over the midwest.  Tom Grier

    Hetty Green queen of supply-side bonhomie bone-drab If you know what I mean On the road It's well-advised to follow your own path In the year of the chewable Ambien tab tHE dECEMBERISTS

    by bongojazz on Sun May 01, 2011 at 05:42:55 PM PDT

    •  I just heard the name first time (4+ / 0-)

      this evening - I hear a diarist is being courted for the series on Grier's work.  Am hopeful. Thank you for the link!

      ‘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 01, 2011 at 05:49:48 PM PDT

      [ Parent ]

  •  Thank you so much for posting this (6+ / 0-)

    Your experience is not that different from my own. I do have somewhat of a science background, but I'm not a microbiologist or an infectious disease specialist and the learning curve on this condition can be quite steep.

    I want to know as much as I can, and learn with whatever focus and energy I possess. But there is a point where I just have to take a step back and say, I'm suffering, and this needs recognition; it isn' t just about science it's about getting through life.

    I look forward to reading more entries from you.

  •  I am increasingly convinced (4+ / 0-)

    that there are genotypes that are susceptible and ones that are resistant. My husband has 4 biological siblings and all but 1 have had a variety of Lyme-like illnesses. One sibling probably got the European version. One had psychosis as a result of Lyme infection. Also, it is entirely possible that certain genotypes express the infection in different ways, some more mental/psych, others more arthritic, for example.

    There have been genotypes proven to be resistant to HIV-infection, so it's not a big stretch of the imagination. This is, I suspect, what makes it so difficult for Docs to "understand" the disease.

    Koch's postulates don't allow for this type of variation. Disease can be replicated upon infection in a non-infected host. That may not be the case here.

    Inconceivable! You keep using that word. I do not think it means what you think it means.

    by hopeful on Mon May 02, 2011 at 08:39:40 AM PDT

    •  oh, you're encouraging me to look this up again... (4+ / 0-)

      ... and write about it.

      There are genotypes which only produce the rash and not the more severe symptoms. And vice-versa, I believe. I'd have to confirm it, but I think Dr. Ben Luft discussed this at October's Institute of Medicine workshop on tickborne disease.

      And as I've cited upstream, there are Europeans vacationing in the US who turn up in clinics in the UK and other countries in Europe who were infected with Borrelia burgdorferi in the US but have acute neurological symptoms just like those of European strains. This isn't surprising, because in a number of research publications it's stated that Bb is pretty neurotropic (ie it loves brains, just like zombies).

      Koch's postulates are useful, but only up to a point. There are a number of known diseases which are recognized which do not meet all of Koch's postulates, and yet a number of researchers (probably those at the NIH on the current xenodiagnosis clinical study?) would like to squeeze Borrelia into it just to end the controversy.

    •  Another area of inquiry... (3+ / 0-)

      .. is whether the number of tick bits correlates with severity.

      The real discover of LD (Polly Muray, the Mom that would not take no for an answer) observed that symptoms flared and or worsened with subsequent bites.

      The usual explanation is is that subsequent tick bites caused more infections from different strains and or co-infections with different diseases.

      However it has been found that tick saliva antigens cause LD spirocheates to become motile (necessary to pass it along to the next tick and subsequent host).

      I think LD has been around for a very long time, but the number of ticks and tick bites explains why LD has gone from a "usually self limited" form (in the 40's through the mid 70's) to the forms that have been recognized as important in the decades since.

      Global warming could explain the increase in ticks, but that is only one possibility.

      Ms Murray's observations of this disease were very accurate and this is one area that has not been very well researched.

      Ben Lufts work on the difference between strains is also very important.

      The IDSA folks thing everything there was to know was figured out in the 80's but science and medicine have gotten a lot more sophisticated since then. I suspect Luft has or will find specific DNA sequences that relate to various symptoms.

  •  MsGrin, you write so well about a very (3+ / 0-)
    Recommended by:
    42, KelleyRN2, MsGrin

    difficult and politicized area of health.

    Your call for civility and emphasizing the search for answers means open-mindedness not Conspiracy Theories (CT) was very well stated.  CT criticism and labeling has the effect of stifling discussion and constructive research. Oddly, this effect is similar to the extremism caused by true CT believers.

    Your artfully written diary has a constructive thread and solid contributions from commenters. The questions such as those written by Nurse Kelley, are the appropriate questions.

    Thank you for your passion and perseverance. You are adding concrete knowledge to DKos.

    I would like to add "health care" to your tags.

    •  What a lovely compliment - much appreciated (2+ / 0-)
      Recommended by:
      Regina in a Sears Kit House, 42

      There is such a very long learning curve about this disease.  Granted it has given me new learning disabilities, but two years after diagnosis, I still feel like a babe in these woods.

      My main hope for this year's series is to show how many of us there are in this community touched by Lyme and to cover a spectrum of issues from personal to scientific.  This is a collaborative effort to last through the month.  :-)

      May got here sooner than I had imagined... er, I got caught up in Texas Lyme politics which have imploded.

      ‘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 Mon May 02, 2011 at 09:28:32 PM PDT

      [ Parent ]

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