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HeadWay, Issue #143 -- Migraine, Lyme Disease, and Misdiagnosis
June 21, 2016

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In this issue:

Important Notice: Migraine Summit Library

Migraine, Lyme Disease, and Misdiagnosis

Say what?! Enteric

Do you believe in the service that HeadWay provides to those with migraine, cluster, and other types of headache, as well as their doctors, family, and friends? Consider sponsoring HeadWay with a one or two line ad. For more information, visit this page.

Important Notice: Migraine Summit Library

Before we get to our main topic, I have an important announcement. Most of you already know about the Migraine World Summit, which was held back in April. 32 interviews were done with experts, doctors, researchers and advocates from around the world.

As it turned out, this became a unique library of cutting-edge information about migraine. Experts came from Harvard University, the National Headache Foundation, the Cleveland Clinic, Migraine Trust, Stanford University, and many more.

From that one-of-a-kind library came an ongoing discussion about treatments and research.

In order to better serve that community, the website is going to be closed to new users this week.

After Thursday, the 23rd of June, at 9pm EST, the Migraine Summit Library will no longer be available for purchase.

If you're interested in the newest and best tested treatments for migraine, I would encourage you to invest in this resource. Not only will you have all the interviews (in video, mp3, and transcript to read and search), you will also have added resources such as a treatment guide (based on current research), a trigger guide, useful booklets and, of course, ongoing access to the continuing discussion.

To read more, go to the Migraine World Summit Access Passes page.

And now, back to our regular programming. ☺

Migraine, Lyme Disease, and Misdiagnosis

Lyme disease is frequently misdiagnosed. That is, people with Lyme are frequently diagnosed as having a different disease - and people with another disease are frequently misdiagnosed as having Lyme.

Julia from the United States asked if we could talk about Lyme disease and migraine. Although she asked very nicely, I was a little bit reluctant because it is a pretty specific niche topic. But the fact is that Lyme disease, which generally occurs in the Northern Hemisphere, is an interesting case study that relates to a lot of other conditions and diseases that may be related to migraine. Also, it is indeed a common cause of headaches if you live in an area where Lyme is common.

The Basics

We'll have to move quickly here, so forgive me if I over-simplify.

Lyme disease is a bacterial infection transmitted to humans by the bite of certain types of ticks. The infection may cause fever-like symptoms such as fever and fatigue, and can also cause headache and muscle/joint pain. In most cases, a rash will form somewhere on the body. The rash is circular, and will grow slowly. Sometimes it will have a "bullseye" appearance.

Ideally, you will find a tick on your body, remove it and save it in a sealed container, and go to your doctor. The infection will be treated with antibiotics, and you will soon be feeling better.

When Lyme isn't treated early, symptoms may continue for months or years. Symptoms could include severe headaches, neck stiffness, dizziness, muscle and joint pain, and cognitive problems. And that could look very much like migraine. (see Signs and Symptoms of Untreated Lyme Disease, and also this article on Lyme Disease and Migraine)

When Lyme isn't Lyme

However, there is a concern that many people are erroneously being diagnosed with Lyme who don't have it, just because Lyme is common in certain areas. Ticks can actually carry other diseases which can be transmitted to humans. And Lyme testing is far from perfect. Also, symptoms may look like Lyme but may in fact be something else. (see Lyme Disease? You May Want a Second Opinion)

If your symptoms don't go away after the antibiotics - and after some time for recovery - you may need to be tested for other infections that can be delivered by ticks.

Chronic Lyme Disease

You will see articles online which say that chronic Lyme disease "doesn't exist". This has nothing to do with whether or not symptoms are "real" - it's obvious they are. But the term is too imprecise for most doctors, because it could refer to more than one thing.

There are two common possibilities. First, that the original antibiotics treatment did not entirely clear up the infection. Second, that the original Lyme disease caused damage that leads to continued symptoms even though the original infection is gone.

We don't have time to go down the rabbit hole of diagnosis and treatment. But the biggest controversy has to do with long-term antibiotic use. This is not the only treatment, but there are some advocates for it. Obviously there are a lot of risks, and there have not been enough clinical trials - hence the controversy.

Lyme and Migraine and Headache

First, the connection between Lyme and headache and migraine is well known, and you are certainly not alone. We need to say that up-front.

Now if Lyme triggers a migraine-like headache, we treat the Lyme disease. But severe migraine-like headaches may also indicate that you have migraine disease, which may need to be treated after the Lyme is gone.

The effects of Lyme may also lead to ongoing problems with headaches. In most cases, the headaches and related symptoms will need to be treated in the same way as headaches from an unknown cause. In other words, if you have migraine symptoms, you'll be treated for migraine, even if the triggering issue was Lyme disease.

The Challenge

Let's assume that you have had symptoms that look like they could be Lyme, but you test negative. Or you've tested positive, you've been treated, and the symptoms persist.

We like to think that science and modern-medicine is pretty clear-cut. But what we "know" is often pretty vague, even though we hear voices speaking with a great deal of confidence.

Tests such as blood tests or DNA tests are not always as precise and accurate as we are led to believe. And when it comes to many diseases, your doctor still has to ask questions, narrow down the possibilities, and make a judgment call.

That means that - through no negligence of your well-educated and up-to-date doctor, you may still be misdiagnosed.

When we start getting into neurological issues - having to do with your nervous system, cell structure, chemical balance, and so on - things are very complex. Could it be that you have migraine - and Lyme? And yet another condition?


Could these things be related? A common genetic basis? Related to the same bacteria? Maybe, maybe not.

What to do

So here is where you need to do some work, work together with your doctor(s), and keep an open mind. Here are my top suggestions if you're having trouble getting the right diagnosis and effective treatment.

1. Keep track of your symptoms. When did they start? How severe are they? How do they affect your life? Are they constant or intermittent? Are there symptoms that seem to come and go at the same time?

I'm not suggesting you become so inward focused that you become a hypochondriac. However, you need an easy way to record symptoms that you notice.

2. Recognize the wide variety of possibilities. You have headache and joint pain, and you may have had a bite from a tick. Could it be Lyme disease? Chronic Lyme disease? Or might you have gotten another condition at the same time? Or did the Lyme trigger another problem? Or is it another bacterial infection? Thyroid issues? A virus? Keep an open mind here. And recognize that you may need to treat more than one condition to find relief. This is very common.

3. Know your medical history (and your family's). The more your doctor knows about this, the better. This can be a big help in tracking down "mystery symptoms".

4. Be patient. It can take time to find the right treatment or treatments, or even the right diagnosis. Celebrate small victories.

5. Get a second opinion. It's very helpful to get a second opinion from a doctor you trust. It's easy to get stuck on a single diagnosis that could either be wrong or only part of the story.

6. Watch your overall health. Don't get too hung up on particular symptoms or treatments. Remember to look to your overall health, and the basics like exercise and a good diet. If you're experiencing more disability, you may have to take small steps. But don't ignore the basics.

7. Avoid ticks in the first place. Here are some tips: Preventing tick bites

Say what?! Bacterial Meningitis

Meningitis is an inflammation of the membranes covering the brain and spinal cord, known as the meninges (hence the name). There are various causes of this, but one cause is a bacterial infection. Meningitis can be a symptoms of infections spread by ticks.

Thanks for reading!  Remember, if you have feedback or ideas for future issues, visit the HeadWay MailRoom.  Your password is nomoache.
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