did a worldwide lyme protest lead to me a lyme literate rheumatologist?

April 29, 2013

yes. yes, it did.

in the event that you haven’t yet heard, there will be a worldwide protest for lyme disease awareness on may 10th OR 11th. it seems less like a protest and more like a worldwide rally to me, but maybe that’s just semantics. whatever we call it, it’s a visible form of resistance and that’s a key ingredient to creating institutional change. you can find out if there’s anything happening in your area by checking this page. i think each region has chosen only one of these two dates, so be sure to look closely for the exact time and day. it’s not a two-day event. for us new yorkers, the rally point is in new york city’s union square on friday, may 11th from 12-4. there’s a nice line up of speakers and some great resources and information available. 

*this protest is how i found my new lyme literate rheumatologist. hell to the yes. there IS such a clinician and, as it turns out, she was also the president of ilads at one time or another. finally, a new strand of hope to light my dreary day.

one of the questions i’ve had from the start of all of this, since i saw the film, under our skin, was how i could discern which symptoms were from lyme and co-infections and what ailments were the result of lupus, scleroderma or any of the other autoimmune disease diagnoses that i’ve accumulated over the years. my initial hope was, of course, that i didn’t actually have any autoimmune disorders and that the great mimicker was to blame. given my family history, that’s likely not the case (did you know that japanese have perhaps the highest rate of autoimmune disease per capita? i am genetically wired for diseases and laughing at people getting hurt). as i’ve been moving through this process, i’ve often wondered how we’ll know when we’re really done. when do we stop treating the lyme and co-infections? where does one thing end and another begin? if only there was a definitive test for tick-borne diseases… sigh. 

i have an incredible rheumatologist who practices functional medicine, but she lives in iowa. though she has attended some seminars on lyme, she’s generally unfamiliar with the treatment protocols and it’s not like there’s one way to treat, one plan that everyone agrees works. the basis for functional medicine lies in examining the underlying causes of symptoms. emphasis is put on treating the patient by creating an individualized plan. there’s a lot of gravity given to the “right” diet and ensuring that your body is being supported in the best holistic ways. this means taking supplements, employing varied cleanses, modifying and changing eating and sleeping habits. antibiotics and other western pharmaceuticals are used sparingly. given these factors, distance and differing approaches, i haven’t actually been able to use her as a resource. i have personally found that most medical practitioners either don’t believe in chronic lyme or are scared of potential and severe repercussions from diagnosing and treating lyme patients. i haven’t been able to get anything out of the appointments with my other doctors because they don’t understand the intense iv antibiotic and integrative treatments i’ve been undergoing. that might be a bit of an overstatement. i haven’t even bothered to schedule any appointments with doctors other than dr. j. i did try to see a highly recommended internist who thought i was crazy for believing in the existence  of chronic lyme disease. i left there furious. sometimes i feel like i’m not above punching somebody in the nuts. he was a great candidate.

switching gears here…

though i doubt that anyone other than my partner really sees it, i’ve been massively depressed. what great actors chronic lyme patients become. my partner’s birthday is in two days, mine is the day after and five days after that, i’ll celebrate six years of being clean and sober. the first week of may has a lot of really big deal events (happy birthday to ALL my taurean friends!) and instead of being excited, i’ve been dreading that week for awhile. it’s not that i mind getting older. that seems like a complete waste of energy. unfortunately, for one reason or another, every year around my birthday, i slump my way into a giant hole. when i wasn’t partnered with a person who had a back-to-back birth date, it didn’t matter much that i felt like eeyore every year on beltane. but when you’re a consistent, sad bastard on your boo’s birthday year after year it’s not so great. and that just seems to fuel the pathetic fire. my great depression of 2013 seems to have arrived a bit early. i’ve been weepy and overly sensitive, quiet when i’m angry and withdrawn when no one’s watching. i feel totally lonely, but don’t reach out to anyone. i want and need help taking care of the house, the animals, the boy with a broken ankle, but when help comes, i unintentionally rally, put on the show, and don’t ask for much. i did ask a friend to help me pick up two enormous tool chests from sears. he was kind enough to drive and help shoulder the beasts into my garage. a few friends have come up to cook dinner and hang out, which has been a nice distraction. but… the only people i feel like i can really mine for heavy assistance are my immediate family members, and at this point, i’ve really worn them down. i feel like a burden and to make everything harder, so does my partner. he’s horizontal, leg wedged up in the air and constantly apologizing. wet blanket meets wet blanket. i have been in dire need of a win.

switching to third gear…

while looking at the line up for the protest in nyc, i noticed that a rheumatologist/internist was a featured speaker. when i read that she was a former ilads president, i instantly googled her contact info, called her office and set up an appointment. oddly (which i say because she was the president of ilads), she has incredibly varied reviews from her patients. i tend to feel like the majority of reviews are made by unhappy customers, not the satisfied ones. i often think about writing rave reviews, but i must admit that the only ones i can actually remember posting we’re the ones where i was mad as hell (and i won’t take it anymore. apparently i’m experiencing a throwback monday. that movie came out in 1976). in any case, she actually accepts my insurance! i’m really, really excited for my upcoming appointment. i had long since given up the idea that i was ever going to find a rheumatologist who actually “gets it.” at some point i’ll get into the backstory because it’s quite significant in lyme disease’s big picture. we have rheumatologist, allen steere, at the heart of the problem, but this piece is already too long. how the field of rheumatology stunted and/or prevented comprehensive lyme disease research is fodder for another day. today, i’m grateful for the chance to meet with a new doctor who might be able to help me negotiate the intersections of my dis/eases.

come hell or high water, i’ll be in union square the friday after next. i might even geek out enough to wear a lime green dress that was once my favorite, albeit obnoxious, frock. that’s how far i’d go to bring even the slightest bit of attention to lyme disease awareness, education and treatments. i will break all my fashion rules and bust out clothing from the days when i tromped through life like a little japanese manga character. last fall, i promised to be at the ilads conference but failed to follow through on account of having sepsis. this spring, nothing is going to stand in my way. i have 10 days to come up with a clever sign. i don’t think that the “jesus had two dads and he turned out just fine,” sign in my garage is going to fit the bill.

*hi mom. i’m sorry i didn’t tell you first. i’m too crabby to talk on the phone. i’ll call you tomorrow. xo

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7 Responses to “did a worldwide lyme protest lead to me a lyme literate rheumatologist?”

  1. I hope that your appointment with the rheumatologist helps you find some answers. Our Lyme Rally here in NH is on May 11th (which is my 50th birthday). I can relate to trying to stave off depression. When I started treatment and my doc said 6-12 months I felt like I could get through it; now 16 months later he’s saying due to my genetics & autoimmune issues we are probably looking at long term management and not cure – it’s hard not to be depressed. Happy Birthday to you and your man. Rally on! Got to get myself something Lyme green. 🙂

    • thank you for sharing this and happy future 50th! ❤ i'm going to put some faith in you making a connection at the protest that offers you a new avenue to explore, a new door to open and more optimistic prognosis. i love it when there's actually something really cool already happening on my birthday. it's a good distraction and a nice way to get face-to-face birthday wishes. maybe most people already get that! oh, my virtual world.
      it sounds like we're on the same month of treatments with our current docs and my heart goes out to you that the report on your table doesn't look as promising as it once did. i went into this believing that if i could just kills the tbds, i could beat it all. though i'd been told that my chances of completely eradicating it were infinitesimal, there's this part of me that refuses to believe that it's true. i created some sort of conversational tag line about how statistically my odds of clearing the lyme completely are almost at zero, but i'm going to be on the other side of that number. and maybe the best that will happen is that we'll finally be able to get our autoimmune and other health issues into a remission (for me, that would be the first time ever), but i'll put you into that mantra of mine. we're going to beat the odds.
      i wish i was going to be able to find you at the NH rally! represent and act up!
      xo
      k

  2. L said

    I’ve been following your blog for about 7 months now and have found your style, determination, honesty, and willingness to share inspirational and incredibly helpful. I am 9 months into treatment and have developed Reynaud’s and recently noticed my skin was drooping. This lead to excessive panic which lead to frantic attempts to self- treat/correct these uncontrollable problems. Under my llmd’s watch, my lyme and bartonella symptoms have almost vanished, but these acquired autoimmune responses really scare me. This weekend I started researching scleroderma and my anxiety shot through the roof. For the sake of my sanity, not to mention my family’s sanity, I want to believe that these lingering bartonella symptoms will fade and that autoimmune responses will resolve following treatment. Does anyone know if the immune system can normalize once treatment discontinues? I’ve been bad about reaching out and talking about my problem, so if anyone would be willing to contact me, it would probably ease some of the burden. It’s amazing to me that with all you have gone through, that you find the time and energy to share, attend rallies, and raise awareness. I can’t wait to hear about your visit with the lyme literate rheumatologist and I pray that answers exist for all of us.

    • hi l,
      it’s with a heavy heart that i identify with the stories i hear and read and an even heavier heart to know that so many people can identify with mine. it’s such a scary and excruciating road, laced with potholes and also graced with the occasional view of what life could look like with out all the tbd symptoms and the roller coaster of treatments.
      i just erased an inappropriately long response here! i have been asking a lot of similar questions and surfacing with some hopeful answers. right now, i am in a massive SLE lupus flare and the tbd treatments contributed to a perfect storm of horrible symptoms from both conditions (i’m actually including the hotbed of autoimmune diseases that i have when i say ‘lupus.’ there are just too many to try to address!). i’m currently holding off on my tbd treatments to treat the lyme.
      i will write about my doctor’s appointments, as i’ve now seen the rheumatologist three times.
      this is a really, really tricky territory to navigate. i know that it’s scary. i also know that the internet is going leave you haunted by the worst case scenarios. in my experience, unless you have something completely remarkable (read: grotesque medical mystery), you’re not going hit any of those terrifying markers with your autoimmune response. i, and a few amazing women i’ve met on this journey, have at one time or another been the people attached to the body parts you see photos of. for me, these things have passed. my immune system has strengthened. i’ve fought back. i’ve healed, though obviously not completely, and i continue to believe that i will figure it out.
      i don’t know exactly how to private message me, but i do think that if you post a comment, i have to approve it before it’s public. if you want to send me your email address, i can give you the name of the doctor that i’m seeing. i’ll be totally awol for the next five days because i’m moving, but i promise i’ll be back on here soon.
      in the meantime, please know you are not alone and that there are solutions. sunblock, antioxidants like acai and green tea, good sleep and vitamin c are all great for collagen production.
      sending you huge wishes for better days and less stress. i know that the not knowing part can be so much worse than the actual problem. and though i’ll have to find my sources to cite, i believe it’s case by case. plenty of patients develop autoimmune responses and diseases that disappear into permanent remission when they are addressed. i’ll put my faith in that happening for you.
      in peace,
      k

  3. Cindi said

    Thank god I’m not alone!!! 😦 I found this site looking for a Lymes Literate rheumatologist. My doctors are in totally different camps. One says Lupus and the other Lymes. I’ve had to stop all treatment and don’t know what to do. I’m so sick! I live in NJ. Anything you can share??? Desperately Need help !!!

    • hi cindi. so glad that you reached out. you’re in total luck being in new jersey! there’s a rheumatologist in basking ridge, andrea gaito, who is also a lyme doctor. i’m not sure what her insurance situation is (though i believe she does not accept most insurance, but does take medicare) but appointment costs are more reasonable than many lyme docs. she generally has good availability in terms of appointments, so you should be able to get in quickly.
      i have to remind myself when i see her that even though she’s a lyme doc and a founding member and former president of ilads, she’s still a rheumatologist! i’ve found a bit of a disconnect between her roles as a lyme practitioner and a rheumie. i still have my lyme doctor, which, for me, is critical.
      i hope that this information helps. if this doesn’t work out, please feel free to contact me and we can try to find another avenue that might be of more use.
      best wishes on your path to wellness!
      -k

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