New to Lyme, and so many questions

pccamp said...
I am having trouble reconciling all the competing information - how can there be such a difference of opinion about Lyme between really smart people!

Factionalism and ego. The science is on the side of Lyme being as difficult to treat as TB, this is how it happened:

From 1977-1980, a team at Yale University headed by Alan Steere “discovered” and then defined a new disease, which he initially called Lyme arthritis. Steere noted in his early publications that approximately 25% of the people in his study cohorts had a very unique clinical feature – a rash called an erythema migrans or EM which resembles a bulls-eye – that sometimes accompanied other non-specific but debilitating symptoms (joint/muscle pain, headaches, peripheral nerve pain and sensations, fatigue).

As a newly minted "Epidemiology Fellow" of the CDC, he had been trained to look for clinical signs associated with disease symptoms, which could be "objectively" observed by a physician without relying on "subjective" reports by patients about what aches and pains they might be having. The unusual skin rash was just such a perfect, pathognomonic, feature.

Having noted and associated this unique rash with patients showing a similar cluster of subjective symptoms, his next studies set out to investigate the association of the rash with the disease. Steere’s subsequent studies were DESIGNED to CONFIRM what he wanted to be true – that the EM was a clinical sign of this new disease – as opposed to designing studies to impartially study the occurrence of the rash in people with the cluster of symptoms typical of people with Lyme disease. This is an example of a notable type of research bias, referred to as confirmation bias.

Steere also overemphasized the significance of joint swelling as a clinical sign of “Lyme arthritis,” because he was, after all, a rheumatologist, and therefore pain in a joint that was swollen could be taken as a “sign” of a disease process. Joint pain without obvious swelling was considered a nonspecific symptom that did not point to anything in particular.

The 1980s came along and New York decided that maybe they should look into this "new" disease since Long Island shares a body of water with Connecticut. SUNY Stony Brook on Long Island had a research team looking at ticks and diseases, so in 1982, the NYS Department of Health launched a study to find out just how many cases of this new disease there were in New York, to decide if the State should consider whether a public health response was needed.

The design of this study was for the Department of Health to alert New York State health care providers, through newsletter publications and also by sending letters to 300 primary care physicians, about the new disease and provide them with specific and detailed information and pictures about what to look for FIRST -- a unique rash shaped like a perfect bulls-eye.

The letters directed health care providers to fill out a form for each patient seeking medical care for (in order of emphasis): a rash with a bulls-eye appearance; aseptic meningitis; facial paralysis (Bell’s Palsy); or large joint arthritis with swelling.

The inherent bias in the design of this research is obvious. The study directed a naïve population to be on the lookout for a new disease hallmarked by a specific type of rash shaped like a bulls-eye.

So what do you think got noticed by the physicians who participated in this study – the patients walking in the door with a bulls-eye rash, or the ones complaining about fatigue or headaches or pain in their non-swollen joints?

More...

Really smart people don't like to admit when they've made a mistake.

Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease
Lyme bacteria survive 28-day course of antibiotics months after infection

pccamp said...
Hello everyone, I'm new and in the "maybe I have Lyme, maybe I don't phase" and would love your opinions. Bear with me .. In early December I started having pins and needles in my calves and feet. It progressed, and I began having some dizziness and palpitations. Increase in GERD, then terrible diarrhea (I have had diagnosed esophogitis and gastritis for many years - on PPIs). In early January I had an unusual reaction to nitrous oxide (terrible tingling and dizziness), so my doc thought B12 deficiency, which can sometimes cause specific reaction to nitrous oxide. Symptoms fit perfectly. But B12 and folate were high, and methylmalonic acid and homocysteine were normal, so not functional B12 deficiency. I then get referred to neurologist for MS workup. EMG, nerve conduction, MRI normal. He suggests B6 toxicity, which also fits, symptom-wise. B6 a little elevated. I get referred to a hematologist because they found an elevated IgA, so concern about amyloidosis or multiple myeloma. No other abnormal blood tests, or skeletal changes.

Then they move on to Lyme testing. (I live in Colorado, so very little experience among docs here). But I grew up in Ohio and connecticut and I know I had a tick in my head for about 2 weeks when i was 9 (50 Years ago!!!) rPerhaps more significantly, I was in Cape cod in August. In October, I did have a round dark red oval rash on my shoulder (about 1 1/2 inches) Flat, didnt itch, no bulls eye, looked kind of like a bruise. I had generalize itching and had gone to doc - I actually asked about Lyme and he said rash didnt look like it. Anyway, back to the present, my testing (LabCorp) showed no IgG band, but IgM 23 present. Interpretation was negative for Lyme. I've now discovered that band 23 is highly specific fror Lyme, but that even IgeneX requires 2 positive bands.

I dont know where to turn because of the lack of good docs in colorado, at least that I could find. I have docs who are pretty open-minded and curious, and willing to listen to my thoughts, but they just dont have the necessary experience. I tend to be pretty science-based (serious genetics backround), and to me, some of the alternative practitioners seem a little out-there. I am having trouble reconciling all the competing information - how can there be such a difference of opinion about Lyme between really smart people!
Sorry for the looong post; I'm just very concerned and not sure where to turn next. any thoughts? thank you!

Hi pccamp - welcome our community.

your exposure, plus the questionable rash and previous tick attachment......and your symptoms are certainly enough to question lyme disease. The lyme specific band 23 being positive is enough to back up a clinical diagnosis.

You should find a LLMD and schedule an appointment. We can help you find one. Start a new thread; "Looking for LLMD in/near_____" and fill in the blank with your location.

Then enable your email option so members can send you recommendations.

You can also email me and I'll see what I have listed in Colorado. (Off the top of my head, I don't think I have many options (if any).

We encourage our new members to read through the information contained in the thread: "New to Lyme?..Start Here!" It's packed full of useful information.

lymeaimee said...
I live in Colorado. I have a friend here who has Lyme and has been very happy with her treatment with Dr. SN. You will have to make initial appointment with Physicians Assistant or Nurse practitioner as he is very hard to get appointment but I have heard he is the best in Colorado. I wish you the best!

Hi lymeaimee - welcome!

I edited your post to remove the Dr.'s name and contact info. For the protection of our LL Dr.'s we don't post their full names and contact info.
Just initials and city/state is all.


We encourage our new members to read through the information packet; "New to Lyme?..Start Here!" It's packed full of useful information.

Please feel free to start a new thread and share your story with us here.