Wednesday, December 5, 2012

7 Part One: How A Skeptic Ended Up Seeing An ILADS Doctor

Early November 2012, the International Lyme and Associated Diseases Society - also known as ILADS - held their annual conference in Boston, Massachussetts. Due to the incoming frankenstorm, Sandy -  and other reasons - I did not attend the conference. Instead, I joined hundreds of viewers in watching a prerecorded version of different ILADS conference presentations on livestream last weekend.

I was originally going to give my own bullet summary about each of the conference presentations I viewed - but I think that if you are interested in what each of the presenters had to say, it's best to view a replay of their presentations during the next two weekends and view their slides on the ILADS website. It is going to take me a long time to write on the presentations I intend to single out.

(I did write a quick overview of my initial impressions of the streamed video feed on a thread on Lymenet Europe, and that - along with other conference watchers' opinions - can be found here: Thoughts re ILADS 2012 Streamed Conference, Dec. 1-2 )

But before I write more extensively on specific conference presentations (and also grade them based on how much they are evidence-based) what I want to do today is share part one of a series of posts on how it is I got involved with ILADS and LLMDs in the first place. Not only as a patient - but as a skeptic.

This series will hopefully shed some light on how someone like me would fall into ILADS' orbit instead of accepting the Infectious Disease Society of America's guidelines for the treatment of Lyme disease, and explain how someone like me has come to view the issue of chronic Lyme disease after several years of living with persisting symptoms.

How I Ended Up Seeing An LLMD

It's important to offer some backstory so you know how I came to know ILADS doctors, and how some patients with similar backgrounds such as my own may end up seeing an ILADS doctor - or even more generally, what is called a Lyme Literate Medical Doctor (LLMD).

It should be noted that the term "Lyme literate doctor" is in and of itself almost meaningless to most people, and in various circles it can mean anything from an infectious disease specialist to a doctor who knows enough about Lyme disease to know it when he sees it and will treat it. For the sake of discussion here, a Lyme literate doctor is one who knows about multiple tickborne infections, is willing to treat patients using longer courses of antibiotics than the IDSA guidelines state, and does not put a hard limit on either treatment duration or dosage.

But I digress... Here's my story:

One day several years ago I went for the hike in the mountains, and that evening, found a tick embedded in my back. I was alone, there was no one else around to remove it, and I am certain I removed it improperly.

Fast forward... I developed a rash around the bite site, and went to a local clinic to get it checked out. I was told I was having a localized allergic reaction to the bite, and that there wasn't any Lyme disease in the area I'd been bitten. In fact, I was told Lyme didn't exist in the area and was rare in the state.

The doctor gave me a prophylactic dose of doxycycline, but little did I know at the time that it wouldn't be enough. In another week, my rash had expanded, I felt like I was getting a flu, and I returned to the clinic - only to be prescribed Zithromax and get diagnosed with a sinus infection. I got very sick after I finished my Z-pack (the full story in all its gory detail is on this page), had to get dropped off at the door to the clinic rather than walk there, and during my appointment was told again that I couldn't have Lyme disease. Lyme disease wasn't endemic to the area in which I'd been bitten. But nonetheless, a blood draw for an ELISA was taken at my insistence.

The test result came back negative, and I was told that I did not have Lyme disease. However, what I did not know at the time - and learned later - is that people don't always immediately produce antibodies to Borrelia burgdorferi, the bacteria which causes Lyme disease. It can take 4-6 weeks to produce a positive antibody response.

I also learned later that taking antibiotics early in infection can abrogate the immune response to the degree that antibodies may not register on the test even if you are infected. (Fortunately, this was not the case with me, as some time later I did have a positive test.)

Even the Centers For Disease Control (CDC) - viewed by many chronic Lyme disease patients as being too restrictive in its approach to diagnostic criteria, testing, and treatment of Lyme disease - has made it clear that these two factors can lead to a false negative in testing for early Lyme disease.

By now, you might be sitting there wondering where I'm going with all this. It's this simple:

My family doctor knew nothing about Lyme disease.

My (now ex) family doctor did not think I had Lyme disease because of where I was bitten - and missed the pathognomonic (which means a symptom which is the gold standard for diagnosis) sign of Lyme disease which should have led to my immediate treatment with a few weeks of doxycycline - if not a few weeks of IV Ceftriaxone.

The doctor did not even treat me based on the IDSA's own guidelines when they should have.

I am considered in the minority among chronic Lyme disease patients - at least so far as I know. The largest survey of chronic Lyme disease patients that I know of was conducted by Lorraine Johnson of, a patient advocacy organization. The results indicated that in their survey of over 4,500 patients with chronic Lyme, 73% were not diagnosed within a year. And many patients report not remembering receiving a tick bite, not seeing an EM rash, and having to see numerous doctors before receiving a diagnosis of Lyme disease.

This was not me. I am the person who, in many ways, was already an outlier in life - and now I had become an outlier among outliers; the estranged among the estranged.

Had my family doctor known what I had and referred me to an infectious disease specialist immediately - and had that specialist seen the severity of my symptoms - odds are good I would not be here writing all this here for you to read.

But between having gone online to contact Lyme disease support groups for a referral, and my inability to get a referral to an infectious disease specialist, I ended up seeing a LLMD for diagnosis and treatment.

My LLMD told me that I was in fact a textbook case of Lyme disease, and it was astonishing that I had not received treatment right away. I agreed, knowing exactly what happened to me and just how seriously ill I was, I did not understand why this happened to me.

When I returned to the original clinic a couple times, enlarging EM rash and all, that should have been the signal to act. Instead, it was written off.

My LLMD informed me that he and the state health department knew the region in which I'd been hiking was endemic for Lyme disease, and further follow up with the state health department confirmed this as true. My LLMD immediately gave me my first round of antibiotic treatment, and while I should have had IV antibiotics, I could not because insurance would not cover it. I also could not afford to pay for it out of pocket because I stopped working when I got too sick.

I had a test for Lyme disease and at that point, my test was positive. And as I continued to get sicker while on treatment, my LLMD suspected I had a coinfection and tested me for a few - of which babesiosis also came back positive, and it made sense because my symptom presentation matched the diagnosis.

What I experienced early on in this LLMD's office was not what I'd experienced in my local clinic. First, the LLMD knew about early Lyme disease and knew where endemic areas in the state were. I had no idea where they were - nor did the previous doctor I'd seen. The LLMD was well informed about different coinfections ticks can carry. At the time, I knew nothing about coinfections - and I barely knew anything about Lyme. The LLMD also ran additional tests to rule out other conditions at the time, and make sure nothing outside of tickborne infection was missed. I appreciated the thorough analysis.

The appointment was thorough, and I got the impression my new LLMD was more competent than the doctors I had seen in my local clinic. And over the following months, this LLMD's treatment took me from being unable to think straight, hardly being able to walk, and being in so much pain I had been contemplating suicide to slowly thinking again and walking from the bedroom to the mailbox and back.

So here are the factors which lead to my getting involved with the world of LLMDs and ILADS:

- Repeated misdiagnosis of early infection by my family doctor when I had a glaringly obvious EM rash.
- Being denied a diagnosis due to a negative ELISA when the doctor should have known it was given too early to result in a positive test.
- The inability to get a referral to an infectious disease specialist.
- The impression that the LLMD was knowledgable and competent, and more knowledgable and competent than doctors at my clinic.
- Being believed that I was in fact as severely ill as I had stated.
- Receiving an extensive exam and having a full medical history taken - more time was spent with me than any doctor had ever spent on me.
- Being given tests to rule out any other conditions - both tickborne coinfections and non-tickborne related medical conditions.

So to any family doctors who are out there who have a patient in front of them with an expanding dark red oval rash with no central clearing and a tick bite in the middle of it: Treat them. Don't wait for a positive blood test result. A little doxycycline goes a long way in early Lyme disease and helps patients avoid becoming a late stage case or take on this controversial diagnosis of chronic Lyme disease.

But the number one factor which landed me in the LLMD's office cannot be emphasized enough:

I was very, VERY sick. Sicker than I had ever been in my entire life. What I had did not feel like a mild or even moderate flu-like illness. I had so much pain in my body, it felt bone-breaking. I had a high fever and shortness of breath. I had so much inflammation and weakness in my arms that I could not wash my own back. I could not stand in the shower. This went on for weeks, and did not match in magnitude or form the experience that a patient, John, describes of his own brush with Lyme disease on the CDC's website.

I needed to see someone who would treat me, and I wasn't going to go to some alternative doctor who was going to give me herbs and supplements and send me on my way. The clinic had already blown me off. And my friends were concerned about me - some even thought with my symptoms that I should see a neurologist - but getting an appointment for one had its own slow timeline.

When I ended up looking online and called a few local Lyme disease support groups and told them about what happened to me and asked which clinic I should go to, I was informed by multiple members of these groups that my experience was not that uncommon; that I was better off getting an appointment with an LLMD right away.

Lyme disease patient advocacy played a role in my getting to see a LLMD. Before I had made any of my phone calls, I had never heard of an LLMD nor did I know what it meant. I did not know all about how LLMDs treated patients. All I knew was that I had contracted Lyme disease recently and needed help. And who else do you call about specific diseases outside of doctors who treat them other than other patients who have them?

At that stage, I did not know there was a controversy surrounding Lyme disease. That would come later. All I knew at this stage was that I had early Lyme disease and it needed treating. The pain needed to stop - and stop soon.

(Part Two next: How I decided to take antibiotics long term, how the Lyme disease patient community became part of my life, and the inner conflicts which have arisen by being a patient with my condition. Followed up by Part Three: Lyme disease pseudoscience and science.)


  1. The link early on in this post which should take you to a Lymenet Europe discussion, Thoughts re ILADS 2012 Streamed Conference, Dec. 1-2, is incorrect.
    Here's the correct link.

    1. Thanks for pointing out the broken link - soon as I get to a keyboard that isn't smartphone sized, I will repair it.

  2. Hi CO, 
    I'm wondering if maybe you were treated by IDSA guidelines, or at least CDC recommendations, after all. Doctors aren't supposed to diagnose people with Lyme, if they got their tick bite in a non-endemic area. If your area was considered non-endemic according to the CDC (and they recognize a very limited area as endemic), then the doctor isn't even supposed to diagnose based on a bull's-eye rash (remember the dispute over Lyme disease in the south, with Dr. Masters saying EM should be treated, and the CDC saying no, because "there is no Lyme disease in the south"? See Cure Unknown, or follow the papers in PubMed.)

    They aren't even supposed to order a test if symptoms show up later, because the "pre-test probability" is still below 0.2, and that means any positive tests are more likely to be "false-positives" than true ones. 

    See the CDC's Barbara Johnson's presentation at the IDSA hearings, and Dr. Parsonnet's question to her about what he should do, if someone "obviously has Lyme disease", but they don't add up to having a pre-test probability of over 0.2. He was looking at her quite askance. I suspect he is one of the 4 people who voted against the "Executive Summary", which restricts diagnosis, though I don't know that. 

    I think this is a crock, of course. But it's important to know in detail how the game is being played, even though it is obviously absurd, from a scientific or common-sense standpoint. 

  3. Hi Lorima,

    The story is I was in an endemic area for Lyme disease. The general area was considered endemic by the CDC's standards and also, the state health department knew it was endemic. Regional entomologists and regional parks knew the area I hiked in was endemic, and signs are posted at the trailheads warning hikers of the presence of ticks and the possibility of Lyme disease.

    So, the original doctor at the clinic who saw me way ignorant. And me? I knew there might be ticks out there, but I wasn't thinkng about them when I went hiking or thinking about Lyme or what to do about it. I was wearing long pants and boots at the time, but would have anyway - ticks or not.

    The issue comes down to being in an area where flagging has found a definite risk factor for certain counties but as a whole there is some sort of denial about Lyme being a problem in the state.

    Consider how Lyme disease is viewed south of Maryland - and to a degree, even Maryland itself. Your pointing out Master's statement is noteworthy. Some people say Lyme doesn't exist south of the Mason-Dixon Line - when it does and there's evidence it does. If doctors believe that, then they need to talk to those who have done the surveillance work and talk to the county and state.

    I think doctors should diagnose by the EM rash regardless of endemicity because someone can always end up being patient 0. Someone can become the first patient in the county to merit a case and a report.

    As to pre-test probabilities... If the patient is ill and has a flu they can't seem to shake and isn't getting better and they were fine before they took a hike, washed the dog, gardened all weekend, went hunting, etc. then the issue of a tickborne disease needs to be investigated along with other differentials. Since Lyme is the fastest growing vector based disease and is being found in more counties than before, doctors should at least have a suspicion for it and test when nothing else fits.

    At this point, clnicians have to look at Borrelia miyamotoi as a possible cause for infection and in some cases even cause for coinfection with Lyme disease. The clinical picture is not going to map to the pretest probability picture for Lyme disease, and miyamotoi is found pretty much where the Ixodes ticks are found. B. lonestari may also cloud the clinical picture in terms of what to do; Lonestar ticks overlap Ioxdes ticks' to some degree and there we are, struggling with yet another Borreliosis.

    Regardless of pretest probabilities, there are always going to be exceptions. A good doctor will figure this out and do what's necessary to diagnose and tret the patient properly. I did not have a good doctor when it came to the first doctor I saw for Lyme disease - although they may have been good at dealing with other conditions. And I don't know if their inability to do the right thing in my situation was due to what they'd learned in medical school or if the state and county just doesn't bring people up to speed about what actually is known and established fact.

  4. I should add here that at the time I hiked in the mountains where I went, there were no signs about Lyme disease posted at the trailheads - though there were warnings about poison ivy and ticks in general.

    I also just wasn't thinking about Lyme disease at the time and was enjoying time with my companion; Lyme wasn't on my radar then, when today it occupies a fair chunk of my time and attention because it entirely changed my life.

    Even before this, though, in the area I was bitten in there didn't seem to be much of a push for awareness or prevention of Lyme disease. Or maybe there was and I just didn't notice it among so many other things going on. I notice any mention of Lyme disease and ticks today, of course.

  5. Hi CO,

    Ah, I see. This doctor (or doctors?) who told you LD was rare, and not in the area where you got bitten, were wrong, even according to the CDC's deficient maps of areas of endemicity.

    So they knew what it is, but they thought...what? probably that it is only in New England and the upper MidWest? I had somebody tell me he advises hikers who hike the Pacific Coast Trail in California, and he's glad there is no LD in California. I corrected him, and then he told me, well, there's no LD in Southern California. I gave up, but to my surprise he later corrected himself - he'd seen a CDC map that gave his area as "moderate" in risk.

  6. Hi Lorima,

    I saw a couple doctors in quick succession before I saw an LLMD. The doctors worked in the same clinic and filled in for each other. Their belief was that Lyme disease was either rare or didn't exist in the state, and one even said that if someone got Lyme disease they probably contracted it somewhere else (outside the state).

    The impression I got was they both really thought it was only a New England area disease. They didn't even know it was in the mid-West, let alone the south. It has become a huge issue in Loudon and Virginia - and became more prominent due to Romney's unusual campaign strategy.

    What I think many people need to know is that a number of areas which are now finally being recognized for being endemic - even by the CDC's standards and not just the state's - already had hot spots before this recognition and people like me were unfortunate in our timing.

    Now, some places do finally get more recognition for being endemic - but only after a number of us were infected. Given global warming and climate change, more and more doctors are going to need to recognize that patient 0 may be in front of them, presenting with an infection with B. burgdorferi, B. miyamotoi, or B. lonestari and treat it early.

    This is not to say every presentation of a flu-like illness = Borreliosis - if someone had something else serious like neurological West Nile Virus, that requires acknowledgement and it too is becoming a bigger summertime problem. It's just that doctors have to be on their toes to consider additional differential diagnoses, and that list will grow as vector-borne illnesses expand their range (including babesiosis).

    And yes - California including Southern California is endemic for Lyme disease - as is the Pacific Northwest. Judging from comments a poster left here some time ago (cave76), Oregon has been particularly bad at acknowledging Lyme disease's presence there and many people apparently go to Washington state or California to get diagnosed and treated.


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