TOUCHED BY LYME: (Guest blog) Stanford investigates Lyme, Parts 1 and 2
Stanford doctors who've been investigating Chronic Fatigue are now taking a look at Lyme disease. And another department at Stanford is investigated the symptoms of chronic Lyme. Alix, a Lyme patient who blogs for the "SpiroChicks" website, takes a look at what may be a change of attitude.
Sunday, August 29, 2010
(reprinted by permission from SpiroChicks)
Stanford Investigates Lyme – Part 1 of 2
By Alix, SpiroChicks co-founder
Four years ago, I made an appointment with Stanford’s Infectious Disease Department to get a second opinion on some Lyme blood tests. After meeting with the nice docs, I had my blood re-drawn. They sent it to “their Lyme lab.” Twice.
You can guess what happened next. According to the docs, I didn’t have Lyme. I soon found out that Stanford doesn’t “do” Lyme, except the occasional acute case that announces itself visually with a bull’s eye rash, complete with embedded tick. (Most in the Lyme community know that only half of us recall a bull’s eye rash. I was one of the “lucky” ones to have had a rash, but I didn’t have photo evidence.)
My symptoms began 16 years prior to that appointment at Stanford. I was a long term case, not an acute one. Long-term untreated Lyme – known as “late Lyme” – was not up for consideration since “their lab” can’t evaluate late stage Lyme Disease. At the time, I didn’t understand that “their lab” didn’t have a chance of picking up my illness.
If it sounds like I have an axe to grind, well, I am angry that my recovery was delayed by two years, but I never thought ill of the Stanford doctors. They are among the most caring, bright and open-minded docs I’ve ever met at Stanford. True detectives, they are open to discovering the etiology behind their most difficult-to-solve cases. They want their chronically ill patients to get better. Like most doctors, however, they didn’t have the right tools to diagnose me, and they didn’t know they didn’t have them.
What they did have were criteria established by the CDC for surveillance of a narrow band of Lyme disease – the type that first presented in Lyme, Connecticut with fevers, swollen knees, and a bull’s eye rash. It’s unknown what percent of Lyme cases actually meet these specific criteria – but it is nowhere near 100%. This system was not meant to diagnose people with Lyme. Unfortunately, as most of us know, the criteria were generalized and presumed to define the entire beast we call Lyme Disease. (See Ashley’s post, The Semantics of Lyme.)
It seemed as though this over-generalization of the narrow CDC criteria was going to go on forever and that an institution like Stanford would never recognize late Lyme or cases of incompletely treated Lyme – known as chronic Lyme – simply because they didn’t recognize the lab that runs the other Lyme tests – IGeneX Lab.
This is the lab that found evidence of Lyme and co-infections in me, on two separate occasions. And guess what? Not only have I improved immensely after treating Lyme for the past year and a half, but within the first few weeks of treatment, my body sprouted a bull’s eye rash in response to the treatment. A secondary bull’s eye rash – as it’s called – is proof that we are using the right treatment for the right condition. In other words, despite the lofty declaration by world-class doctors that I don’t have Lyme. I do.
I assumed Stanford would continue to turn away other Lyme patients, delaying treatment by years… but did you catch the part about the Stanford doctors being open-minded?
The Stanford docs who’ve poured their careers and hearts into trying to crack the case of Chronic Fatigue Syndrome are suddenly curious about the overlap between Lyme, viruses and symptoms of chronic illness. Dr. Montoya’s team is testing the blood of a large sample of California patients for everything from Lyme to co-infections to viruses.
More amazingly, there are actually two separate studies involving Lyme at Stanford! Both will test blood samples for Lyme at IGeneX – the lab Stanford didn’t recognize as recently as two years ago.
I recently spoke with Cheryl Koopman, the lead investigator on a separate Lyme study at Stanford which is funded by Turn the Corner Foundation and CALDA. In my next post, I’ll reveal the exciting news about this study.
Stanford Investigates Lyme – Part 2 of 2
By Alix, SpiroChicks co-founder
If you missed Part 1, I discussed my personal experience with Stanford and Lyme, ultimately forcing me, like many others, to conclude that Stanford doesn’t do Lyme.
Things have changed recently. Stanford is conducting two separate studies involving Lyme. One of them is run by Dr. Montoya, head of Stanford’s Infectious Disease Department, to investigate possible connections in patients who might have overlapping illnesses, be they viral, bacterial, or Lyme-related.
The other study, funded by Turn the Corner Foundation and CALDA, focuses more narrowly on Lyme patients. I spoke with principle investigator Cheryl Koopman to get the scoop on this very exciting study. It’s the first to look at factors that “will take the step of suggesting criteria for diagnosing chronic Lyme Disease,” said Koopman, “they are very likely to change, but research on this needs to begin somewhere.”
Koopman mentioned that one impetus for the study are the many cases of Lyme that go unreported and undiagnosed, leading to a ballooning untreated Lyme population and an ever-sicker set of undiagnosed patients. “The CDC knows the real number [of Lyme cases] is ten times greater,” she said, “In 2008, there were 20,000 cases reported, but it could actually be 200,000, so in ten years you have two million people newly infected, and probably half of those become chronic cases. We don’t actually know the percentage that convert.”
Koopman’s study is also the first to study stigma toward people with Lyme. The study will look at whether stigma correlates with quality of life in Lyme patients. It will also compare quality of life among Lyme patients to healthy people, who will act as a control group. I imagine if these results show a statistically significant difference in quality of life, it will be a great relief to many chronic Lyme sufferers — those whose symptoms have been repeatedly dismissed as “the aches and pains of daily living.”
Another missing link for the Lyme community is validation of the main lab used to diagnose late and chronic Lyme Disease. Koopman’s study is designed to validate IGeneX lab by testing the sensitivity and specificity of their tests by comparing their results to those of other labs.
I asked Koopman why Lyme hadn’t been on Stanford’s radar until now. “There was a paradigm that Lyme was an acute treatable infection that would go away on its own if symptoms never developed,” she said, “Lyme was not a major focus of training at medical school.”
“We are doing the research because symptoms are so varied that doctors can’t keep track of them. It sounds overwhelming and crazy to physicians,” she said, “We want doctors to see the patterns that can help them take it more seriously.”
When medical doctors first saw multiple sclerosis, “it was called Faker’s Disease,” said Koopman, “as if someone could fake not being able to walk.” Koopman’s study gives us hope that someday chronic Lyme will be both recognized and taken seriously by all physicians.
To find out if you qualify to be in the Immune Responses & Symptoms in Lyme Disease Patients & Healthy Controls study, contact one of the project coordinators:
Lila Castillo: 650-725-5590
Alex Aylward: 650-721-6115
Alix, a co-founder of the SpiroChicks blog, writes and speaks on Lyme, nutrition, and a variety of other health-related topics.
I believe this is part of a large study testing CFS patients. They are also testing for XMRV/MLVs which has made a big splash lately and seems to have some influence in this team taking a second look at CFS and other similar chronically ill patients.
Fantastic!!!! Simply fantastic! 🙂
I stopped reading your post after you wrote:
"Like most doctors, however, they didn't have the right tools to diagnose me, and they didn't know they didn't have them."
Oh silly me, I thought there was an epidemic of TBD; and I believed that there was somthin called, index of suspicion. And what about inference to the best conclusion (somethin like that, I believe the philosophers call it). And empirical tx. trials.
OH well those Stanford docs, they really tried their best. But not for you!
A. Lautin MD
WOW!!! It's about time they caught on…I actually called Montoya 18 years ago (after talking to Steere in Boston) and told him my Wetern Blot positive band stuff and he told me I should be treated. So did Steere. But the docs everywhere else didn't think so out here in CA. It went virtually untreated for five more years. But what is amazing to me is that Montoya is finally doing the work for Stanford! Applause!
This is great news! I wish Loma Linda University Medical Center would do something similar here, in Southern CA, especially since they're so close to my city:-).
I'm one of those w/late, or chronic, lyme. I'm 53 & have been infected since I was approximately 30 years old, about 1 year after the birth of my third child.
I was finally diagnosed with it 14 yrs. later. So, yeah, you might call me a "late stager," or one who has chronic lyme. I'm one of those, diagnosed by Dr. Shun Ling in Tarzana, CA and treated effectively. However, he was unable to report my case of lyme, because I didn't fit into that tiny window of criteria set by the CDC. And, because he had to retire, I was "on my own" for several years.
With my symptoms returning, I'm thankful to CALDA for the wonderful information they can give me regarding the location of helpful, lyme-literate doctors.
I also think the study about the quality of the life of lyme patients will be interesting. I know that, outside of my immediate family (they've actually seen the pain, symptoms and fall-out), my extended family has never let me talk about having lyme, except to say that I have it! There are 2 R.N.'s in this bunch! And they wonder why I feel like such a misfit; why I was not able to (but did anyway to try to be "normal" for them) participate in family reunion stuff like hiking, "dancing on the grass" and standing for long periods of time, chatting with all 45-50 of them without waking up 1-2 days later in so much pain I could barely walk. On that last morning, at breakfast before we all left for our homes, I was "helped" (carried by my husband & daughter) to my seat. Yet, not one question was asked or comment given. That's why I think the quality of life study results will be so fascinating.
Now that my returning symptoms are worsening, and the damage that's already been done by lyme is taking its toll, I'm seeking another lyme specialist who might, actually, follow Dr. B's protocols for late-stage, chronic lyme that is treament-resistent. We'll see….Too bad Loma Linda doesn't "do" lyme – yet. They're not 2 hours away.
Sheri, are you still in touch with Dr. Ling? I am trying to contact him because he saved my life as a baby. I am in Dallas now and can’t seem to find anything about him. I haven’t seen hime since 1986, but now that I’m 45…I have questions.
Your post contains the following:
"You can guess what happened next. According to the docs, I didn't have Lyme. I soon found out that"
And
" They are among the most caring, bright and open-minded docs I've ever met at Stanford. True detectives, they are open to discovering the etiology behind their most difficult-to-solve cases. They want their chronically ill patients to get better. Like most doctors, however, they didn't have the right tools to diagnose me, and they didn't know they didn't have them.
I am going to re-iterate, resend my previous comment, a comment which was by any account, proper and fully principled.
At the time you presented to the"nice docs" at Stanford there should have been a "high index of suspicion", as there was (albeit contended), an epidemic of TB diseases. And you were ill, and you presentation suggested privileging or crediting TBD/Lyme in the differential.
There is also something called an empirical treatment trial. You were sick, had been ill, you were in marked discomfort and at risk for progression. Empirical treatment *is quite often the only treatment strategy, as diagnosis in the setting of your presentation is very difficult." The most common symptoms, e.g., headache, dizziness, depression, feeling infected, are the most obscure, recondite and most difficult to "diagnose". The move should have been an empirical trial of Abx for weeks to months. This is not the move the Stanford doctors made. They followed an antinosological (anti-diagnosis) and anti-treatment bias, to your disadvantage.
There is, (although the jargon is from philosophers, philosophy does inform all fields, and tries to better our thinking) *inference to the best best explanation* which means an inference by which one concludes that something is the case on the grounds that this best explains something else one believes to be the case. "Paradigm examples of this kind of inference are found in the natural sciences, where a hypothesis is accepted on the grounds that it best explains relevant observations (The Cambridge Dictionary of Philosophy, 2nd ed).
The (your) statement, Stanford doesn't "do" Lyme" (at the time of your initial presentation) makes no sense "except" in the light of bias against the TBD patient, and in this light, every action Stanford ID took makes complete sense.
I am one of the original members (founding contributors to Dr. Bransfield's, MMI) and very early member of ILADS. Back then I heard too many such descriptions of the well intentioned doctors at Westchester Medical Center, and all the other leading medical centers on the east coast. And this was nearly 10 years (it seems) before your initial presentation to Stanford ID. In tis case I do not think ID is acronymic for Investigative Detectives nor, quite disquietingly Infectious Diseases.
Andrew Lautin, MD
Clinical Professor of Psychiatry
NYU Medical Center
I was also googling looking for Dr. Shun Ling. That man saved my life too. I got Lyme Disease, and was so ridiculously ill from it. Went to about 4 doctors who never could diagnose it. In my desperation and determination to get well, I wound up going to Loma Linda university library and reading books about diseases and symptoms (there was no online in those days). I had narrowed mine down to Lupus or Lyme, and requested a blood test from my family doctor, which came back positive. Pretty sad and scary that me, the novice, could figure it out all on their own, and not people who went to medical school for over 8 years! One even said I had a sinus infection! But he put me on a course of Tetracycline, and so at least his stupidity halted damage to my heart.
However, if it weren’t for Dr. Ling I would be in a wheel chair now, and considering suicide. He was the only one willing to put me on long-term oral antibiotics and treat it aggressively. The recovery was slow and painful, but after 5 years of antibiotics I was at a point of considering life was worth living after all. I lost all my twenties to being sick, but at least I got the help I needed. I even had a healthy baby while on antibiotics, who is now 23 and going into engineering school.
Wherever you are Dr. Ling, thank you from the bottom of my heart. I hope your daughter is doing well herself, because I know she was ill with it, and was the reason for your passion in trying to help others. Bless you and your wife Amy for your kindness and compassion, and for helping all of us with Lyme feel we are not crazy or alone in our pain and anxiety.
Tell me about Stanford. In 2012 a Stanford “Doctor” told my son in so many words that he didn’t have Lyme and that he was only looking for drugs. To make a long story short, ultimately he found relief through hyperbaric oxygen therapy.