My Arlington practice hosted its second Lyme clinic of the summer last Friday, with a steady hum of new patients who’ve been treated for Lyme but aren’t better, or who’ve been told they don’t have Lyme but think they might have it, or who feel the classic symptoms but never had a rash. With all that’s been written and discussed about Lyme Disease, confusion persists aurrounding its symptoms,. diagnosis, and treatment. Here are some of the reasons why:

The symptoms: First, it’s important to remember that what’s often referred to as the “bulls-eye” Lyme Disease rash (called Erythema Migrans rash or EMR) is present in less than half of Lyme cases. And yet, many patients and most doctors don’t even consider Lyme unless there’s a clear history of tick bite and rash. Add to that picture the thousands of patients who had the rash but never saw it, or who saw the rash but didn’t recognize it as EMR, and it’s even clearer why so many people don’t get better. Here’s the bottom line when it comes to symptoms: first, almost all of us live in an area populated by deer ticks (this pertains to most of the US and surprisingly large areas of the world), so almost all of us are at risk. If you suffer from

• unusual and unexplained fatigue
• unusual and unexplained aches and pains
• neurological symptoms including headaches, visual problems, ear ringing, numbness/tingling, and “electric” sensations throughout the body

then you should ask your physician to consider testing for Lyme Disease. Unfortunately that’s when things often get more complicated.

The Diagnosis: I can’t tell you how many patients have said to me “My doctor tested me and I was negative.” Testing for the Lyme bug (called a spirochete) is very difficult, because of the nature of the spirochete and how well it hides. But many doctors rely on insufficient testing. Most use the ELISA, which is not nearly sensitive enough, and often produces a false negative; and many don’t work hard enough to make sense of that elusive Lyme spirochete.

First, the spirochete: it lives in a cell, and has a life cycle of 3-6 weeks. Every month or so, it peeks out of the cell, and the immune system forms a reaction to it. Keep that in mind as we talk about testing.

The only reliable way to test for Lyme is by properly testing the blood for evidence of an immune reaction: if there’s a reaction, we know that Lyme has been there. It’s like when the detective in an old crime novel  finds a cigarette butt in the ashtray: he knows the bad guy has been around. And if the cigarette butt is still warm, he’d better check the closets and under the bed. The Lyme tests that I use are 2 Western Blot tests called an IgG (immunoglobin G) and an IgM (immunoglobin M). The IgG shows whether there’s been an immune reaction to Lyme (cigarette butt in the ashtray); the IgM can pinpoint that exposure to 6-8 weeks (the still-glowing cigarette butt).

In testing, any immuno-reaction is given a number called a band. Some bands are very specific to Lyme, while others can be positive from reactions to a number of organisms. If enough Lyme-sensitive bands are positive, they highly suggest a Lyme scenario, just like jigsaw pieces gather to suggest an image.

So why so many false negatives? For one thing, many physicians stop hunting after a negative ELISA. Also, the labs who commonly test for Lyme do not use a particularly sensitive Western Blot test, and – here’s what really baffles me -many Western Blot assays do not include the 31 and 34 bands, even though these are most sensitive to Lyme. Without those bands, the assays are read as negative.

And another big problem: many physicians ignore a positive IgM result. This makes no sense, as a positive IgM is considered ample evidence in most other infectious disease diagnosis. Yet I can’t tell you how many positive IgMs are ignored, even if the right bands are tested. In many cases, the lab tests are done in the winter months, when a physician can’t explain why a recent immune test would be positive without live ticks around. But there’s an easy explanation for a positive IgM test in the winter, and it relates to what I said earlier about life cycles. Every time that spirochete peeks out of the cell, it’s like a re-infection. For that reason, I consider a wintertime IgM to be a diagnostic indicator of Lyme in someone’s system.

TOMORROW – how I treat Lyme Disease

I’ve never disliked anything Michael J. Fox has been in, from Family Ties to his recent run on Rescue Me. (All right, Spin City could be a bit lame.)   And of course, we share an illness.  But I developed a new respect for him after attending a roundtable discussion last night on Parkinson’s Disease Research hosted by his foundation (http://www.michaeljfox.org/ , known as the MJFF).

I’m assuming an organization gets its mission and personality from the top. And certainly Michael J. Fox is a celebrity with powerful connections and reach. But lots of well-intentioned famous people have started foundations that haven’t exactly exploded onto the landscape (ever heard of the Bruce Willis Foundation?)  The MJFF, devoted to finding and funding viable PD research, is hugely impressive.  They’re laser-focused on their mission, very well organized and attracting bright talent; last night’s discussion included a few of the country’s top PD researchers, including Harvard Medical School’s Michael Schwarzchild. They’re innovative, and willing to work with both academia and the corporate world in novel ways.

They have heart. Sure, someone cued up the promotional video for Team Fox, and the whole room welled up. But the foundation’s appeal goes beyond slick production values; they seem genuinely interested in people’s stories, and in not letting them get lost in the larger statistics of research.   And their work is inspirational, no doubt offering hope to a lot of people.  This inspiration clearly comes from Michael himself.

I’ve got caller ID at home to keep fundraisers away, along with telemarketers and various nuisances.  But if I looked down today and saw MJFF, I think I would answer.

Some recent online articles about the herbal supplement industry have had people asking my advice about safety concerns. The FDA is still not regulating supplement production, choosing instead to leave quality control in the hands of the manufacturers. There’s a lot of tainted and mislabeled product out there, and too many unsuspecting people are spending a lot of money on what amounts to herbal placebos. Or worse, they are buying and ingesting product tainted with trace elements of arsenic or lead.

When you can buy supplements on every streetcorner, how do you know what you’re buying is safe and effective? 

• Do Your Homework. There’s an excellent group called ConsumerLab that works just like Consumer Reports; they buy just like you and I do, off the shelf, and test/rate supplements for quality and safety (our practice’s Natural Apothecary is a voluntary member of ConsumerLab). There’s a yearly fee to subscribe; check out their website for more information and testing results.
• Buy pharmaceutical-grade. I know it’s easy to throw a few products in your cart at the supermarket, but you may be throwing your money away. The only way to guarantee quality and safety is to buy supplements from a reputable supplier whom you trust.

Here’s more information on the supplement industry, in a recent article posted by the Associated Press: http://tinyurl.com/llz6xx

This morning NPR had a feature on Celiac Disease. For those of you who may not be aware, Celiac involves severe gluten intolerance (gluten is the main protein in wheat, oats, rye and barley), and affects nearly 3 million Americans. But for every person who actually has Celiac, there are ten people who are merely sensitive to gluten without having the disease. This is missed a lot in standard medical practice, where a mention of gluten intolerance often leads to a biopsy of the intestines to look for Celiac.

Non-Celiac gluten sensitivity can be the result of several factors: poor digestion of the gluten protein; a minor hereditary gluten intolerance; an immune system gone awry; or a diet that relies heavily on bagels, pizza, bread, pasta, cookies, breaded foods and pastries. The symptoms include intestinal discomfort (bloating, pain, constipation, diarreah), fatigue, headaches, and irritability/behavioral changes. While Celiac itself can only be diagnosed through a biopsy, gluten sensitivity can often be detected through a simple blood test. Or, I will often give symptomatic patients the “withdrawal and challenge” test: basically, you eliminate all gluten from the diet for 2-3 weeks (that means all wheat, oats, rye and barley), then re-introduce it and see what happens. If your symptoms return, you can be reasonably sure that you have a sensitivity.

The only definitive treatment for gluten sensitivity is, sad to say, avoiding it all together. The good news is that there are many more satisfying food options for gluten-sensitive people than there were even a few years ago. Check out http://glutenfreegirl.blogspot.com/ for great recipes, food shopping ideas, and advice. And here’s another suggestion for those times when you either want to indulge, or have no choice (true confession – I’m normally gluten-free, and I ordered broiled fish in a restaurant a few nights ago that turned out to be breaded. It looked so good that I ate it anyway). There’s a supplement you can take called Similase GFCF that contains a digestive enzyme to help break down gluten. It’s not going to help someone with true Celiac Disease, but it might help those of us that have minor sensitivities.

Sometimes you just gotta have that breaded fish.

It’s official – the World Health Organization has designated the Swine Flu a pandemic, with over 30,000 cases reported worldwide. Health care experts believe the numbers of cases more likely number in the hundreds of thousands, with the CDC designating New England as an area that’s especially hard-hit.So how does this change things for those of us who’ve managed to avoid getting sick? The short answer is, it doesn’t. The pandemic designation refers only to the geographic spread of the illness, and not to any increase in its severity. We obviously still need to do everything we can to prevent illness, and my recommendations are the same as those I offered at the start of this flu season: take care to wash your hands frequently, avoid contact with sick people, and take meaningful steps to strengthen your immune system.In light of this latest news, I’ve had many requests for my flu-fighting protocol, so here it is again:

Dr. Rothfeld’s Flu-Fighting Program

All supplements can be purchased through The Natural Apothecary.

Primary / Preventive

• Occilococcinum: one vial weekly, one vial daily at first sign of symptoms
• Immune-boosting homeopathic injection (intramuscular, may repeat in 8 weeks)
• TransFactor Multi Immune: 1 capsule twice daily as preventative, 2 capsules three times daily when traveling or at first sign of symptoms
• Vitamin C (as Ester-C or Buffered C): 1000-2000 mg twice daily
• Vitamin D Balance 1 capsule daily (2000 iu)

Secondary / Treatment

• Esberitox: chew 3 tablets three times daily at first sign of symptoms
• L-lysine 500 mg three times daily at first sign of symptoms
• Vitamin A 25,0000 iu daily for 3-5 days at first sign of symptoms
• Zinc lozenges at first sign of symptoms
• Olive leaf extract 2 capsules twice daily at first sign of symptoms
• Consider Intravenous Vitamin C infusion at first sign of symptoms