Lyme Disease Research Database Independent reporting on all aspects of Lyme Disease

Diagnosis of Lyme disease

Bulls-eye not the only skin rash in Lyme diagnosis

Lyme disease is found in patients whose skin rashes do not look like the bull’s-eye, or so-called “typical” Lyme rash. Skin rashes related to Lyme disease may differ conspicuously from the bull’s-eye type. Lesions may resemble numerous other skin conditions, such as those associated with contact dermatitis, lupus, and spider bites.

“Researchers note that multiple textbooks and websites prominently feature the bull's-eye image as a visual representation of Lyme disease.” They write, “This emphasis on target-like lesions may have inadvertently contributed to an underappreciation for atypical skin lesions caused by Lyme disease.” -- Some Visible Signs of Lyme Disease Are Easily Missed or Mistaken, Science Daily, Apr 22, 2013

Disregard for skin lesions that are unlike the bull’s-eye rash can be a mistake. Early detection and diagnosis is crucial in getting proper treatment, and early treatment is the best prevention for trouble down the road. Steven E, Schutzer, MD, Professor of Medicine at the University of Medicine and Dentistry of New Jersey-New Jersey Medical School,

Clinical diagnosis must consider any skin rash, regardless of its resemblance to the bull’s-eye. Other symptoms may include fever, flu-like malaise, and headache, as well as sensitivity to bright or fluorescent light. Doctors must also consider context, and whether the patient has been in an area where Lyme disease is endemic.

Misdiagnosis is problematic. Get a second, third, or fourth opinion if your doctor does not listen to your concerns, or if he or she disregards unusual skin lesions, or any of your symptoms.

This development in the evolution of Lyme diagnosis is exciting, because it can help medical experts to dispel one of the common myths regarding symptoms that indicate the presence of the Lyme bacteria. Our gratitude goes out to the medical research team who made this discovery, guided by Steven E, Schutzer, MD, Professor of Medicine at the University of Medicine and Dentistry of New Jersey-New Jersey Medical School.

Personal experience taught me what took medical science years to prove. Having had Lyme before these studies were conducted, I am one of the many who did not benefit from the latest research. Instead, doctors and dermatologists insisted that my severe skin lesions were a bad case of eczema and not an indication of Lyme. I was told to “take it easy,” and “get a handle on my stress levels,” and my skin condition would go away.

Nothing like a life-threatening skin rash to make you a little stressed.

Even after being admitted to the ER with a staff infection due to the increasingly spreading rash, doctors believed that only the bull’s-eye rash would signify Lyme. As a result, proper diagnosis and treatment were significantly delayed. Do not let that happen to you or your loved ones.




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NE docs wise to lyme -- but SE docs say no Lyme

The more I learn about Lyme, the more mysterious it seems. And not the disease so much, but the approach that’s taken by our medical professionals. It is a disease with layers of complexity. You can be tested for leukemia, for example, and the results are either positive or negative. Not so with Lyme.

Awareness of Lyme and early
treatment is increasing in the Northeastern US. However, I’ve seen anecdotal evidence that patients also get Lyme disease in the Southeast. On the LDRD Facebook page, in a recent post about Lyme in Georgia, several people living in a smattering of southern states -- Kentucky, Tennessee, Alabama, Georgia -- chimed in to affirm that they’d been diagnosed with Lyme and had caught it at home.

In a casual conversation with an epidemiology professor and veterinarian from Georgia, I learned just last week that there is no Lyme in our region. He agreed that there are other egregious diseases caused by ticks in the SE, but “we don’t have Lyme.”

My dentist here in NC told me the same thing. I imagine most
doctors in the area would concur.

All of this makes me curious. Consider this. When we as Lyme patients approach our healing from all the fundamental dimensions that we can, from body, mind, spirit and shadow, we’re taking more perspectives than most of our doctors are (there are exceptions). Our healing is more whole, and more effective in my experience, when we work on all of these dimensions.

When the CDC declares that there is no Lyme disease in a certain region, their evidence is not, I would argue, taking other perspectives. It is overlooking some equally fundamental dimensions. Cases of Lyme that are diagnosed in the SE, for example. Can we really just ignore that? Pass it off as an anomaly?

Doctors base their conclusions on empirical, scientific evidence. And correctly so. That’s the way it should be. But when there is anecdotal evidence, isn’t that also proof? Someone is surely diagnosing some cases of Lyme in the Southeast. What is going on there? This just doesn’t square with the rational conclusiveness associated with medical people. Could it be that doctors and the CDC are simply too busy, and the catalogue of diseases is too full, to include another?

And yet, the IDSA does seem to be changing. Ever so slowly. At least, in the Northeast they’re changing their approach to treatment and diagnosis in the early stage of Lyme. CBS news in Pittsburgh ran this story recently:
Doctors Change Treatment Recommendations for Lyme Disease.

As this news clip points out, doctors in the NE region are becoming aware of the critical need for early Lyme disease treatment. Patients presenting with a bull’s eye rash, who have caught it immediately, are likely to get antibiotics right away. They have a good chance of beating Lyme in its early stages.

This is good news, because of course the not-so-good news is that Lyme cases are rising alarmingly quickly in Pittsburgh. This year 150 cases have been recorded, up from 10 or 15 last year. 70% of the
ticks in the region are believed to carry the bacteria which causes the Lyme infection.

But apparently they stop at the border. So in the Southeast, we’re not dealing with Lyme. Except of course, anecdotally.

Interesting also to note that Romney is seeking to align his campaign with ILADS. Obama has also acknowledged the disease and its enormous financial implications. Awareness in Washington, DC is steadily but slowly increasing.

Lyme is a political issue, and not simply because of the definition of politics: many (poly) blood-sucking critters (ticks).


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Proposed Lyme legislation ignored by IDSA

In July, a Congressional subcommittee met to discuss a Lyme disease bill that is championed by a number of politicians in the Northeast US. The bill urges congress to approve a national strategy and money for research into prevention, diagnosis, and treatment of Lyme disease. A federal strategy would heighten awareness in all public health agencies.

The hope is that when people who are sick and infected with Lyme go to their local clinic, they may actually be able to receive medical help from doctors who understand the critical importance of early treatment. As it stands, clinics across the US are staffed by medical professionals who remain largely ignorant of it.
Lyme misdiagnoses are rampant and dangerous.

The powerful doctors’ group, the Infectious Diseases Society of America, was absent during the meeting and has remained silent about the bill. You may remember that in 2009 the IDSA opposed a similar bill, claiming that it lacked support from the scientific community.

Senator Richard Blumenthal, who, cosponsored the bill, states that Lyme disease has increased to epidemic proportions. It is the sixth most common reportable disease in the US. In the Northeast, it is second only to
chlamydia. These stats are according to Dr. Ben Beard, director of vector-borne diseases at the federal Centers for Disease Control and Prevention.

From the article “
Lawmakers call for national Lyme disease strategy,” in the Wall Street Journal, July 12, 2012: "'The tick problem is growing. The Lyme disease problem is growing," said Sen. Jack Reed, D-R.I., a cosponsor of the bill in the U.S. Senate. "This requires resources."

The legislation provides for the establishment of an advisory committee made up of researchers, patient advocates and agencies, as well as the coordination of support for developing better diagnostic
tests, surveillance, research and other efforts.'”

Will this be the year that legislators do the right thing and go on the attack against Lyme disease? I continue to hope that influential IDSA doctors – who see their own patients ravaged by the disease – will soon take a stand for more awareness of this increasing epidemic.

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Lyme Diagnostics

If you suspect you have Lyme, doctors can form a iagnosing Lyme Symptoms">diagnosis by your considering your symptoms, history and serology.  Most of the Lyme literate docs whom I have interviewed say they will start treatment on the basis of a clinical diagnosis, so the patients aren’t left waiting and wasting precious time before killing the Lyme bacteria.

Typical Lyme tests are the Western Blot, ELISA and PCR. However, these tests have limited clinical value. Only when the infection is active can the bacteria be measured and identified.

Lyme bacteria has survived throughout millennia because it has the ability to cloak itself and evade the human immune system. Therefore, it can be impossible to detect, using such serology tests.

Aside from a clinical diagnosis, there are some new approaches. A Wisconsin research and education company, NeuroScience, Inc, working in conjunction with an independent laboratory called Pharmasan Labs, Inc, have teamed up in the name of improved diagnostics for Lyme disease and other illnesses.

Dr. Gottfried Kellermann, CEO of NeuroScience, Inc. states on the company website: "It is my life mission to improve the lives of people through better science."

NeuroScience has created a diagnostic tool called My Immune ID-Lyme, which “utilizes the immune memory and cytokine alterations to identify any B burgdorferiexposure (current and/or past) and therefore identify Lyme disease even when B burgdorferi is successfully evading the host immune system or is currently dormant.”

If you’re able to communicate well with your doctor(s), encourage them to use newer, better ways to test for Lyme.

The next step, of course, is successful treatment.

Once you know you have Lyme, I encourage you to treat it from every angle: intentional, behavioral, social and cultural. This integral healing approach leaves no stone unturned. It includes body, mind, spirit and shadow.

For further information on treating Lyme from every angle, or  the cross-training approach, see the 100 Perspectives.

Be fearless in fighting Lyme and insist that your doctor is too.

Be well!
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The Best Lyme Treatment

You've just been diagnosed. Now what? The best course of treatment for Lyme may be the one your doctor prescribes. And it may be a combination of treatments that you devise or discover for yourself.

In another post, I asked readers if they had ever reached a crossroads in Lyme treatment. In comments and emails, the response was a resounding yes, people are doing quite a bit of experimenting with herbal and non-pharmaceutical remedies. Some work, some don't. What doesn't seem to change is the urgency that drives us to keep searching. A woman wrote me to say that she read about teasel on our blog. She decided to try it. A half a year later, she says that including a low dose of the herbal tincture of teasel is the single best move she's ever made in treating herself. She says it keeps her warm, which is a very good thing. An insidious side effect of Lyme infection is a lowering of the body's core temperature. The Big Lyme Chill. It's what makes some Lymies apprehensive about winter. We are already cold enough.

I'm trying teasel too. I began taking it in May 2010, a very low dose, which I had learned about through interviewing with Master Herbalist Matthew Wood. It is, so far, having a positive affect. But I'm a skeptic. I believe that it's not just one herbal tincture that is affecting my health, but a combination of factors. When I ask other people who have cured themselves of serious diseases to talk about how they did it, they seem to have a similar approach. I call it cross-training, and others have called it an Integral approach to healing. In a nutshell, my cross-training approach covers these four areas: experience, behavior, community, and the social systems where my resources can be found. Cross-training is a sports analogy. Getting healthy again after a terrible brush with death and a long illness takes the kind of commitment that pro athletes apply to achieving self-mastery, to winning, to beating the competition against all odds. It takes courage, and work. Not just teasel.

You may feel that you're not in charge of your own Lyme disease treatment. The medical community is certainly divided on the topic, as you probably are well aware. Just for the moment, let's turn away from the limitations of the government standards as we perceive them. Let's focus on the possible. Put it this way: What can you do to make yourself feel more in control of your progress? What small step can you take today? Maybe make a decision that you've been putting off, such as quitting sugar, or getting a second opinion from a nurse practitioner or a nutritionist, or starting a walking routine. Whatever it is, don't put it off. The best Lyme treatment is the one you can stick to, and ultimately of course, it's the one that works to restore your energy, your vitality, and your one precious human life.




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Jessica Wojenski, teen on a mission to educate people about Lyme

As reported in the Hollis Brookline Journal, teenager Jessica Wojenski, who recently graduated from New Hampshire's Bedford High School, has struggled to recover from Lyme symptoms severe enough to keep her out of school much of her junior and senior years.

“There’s such a lack of awareness out there about this that unless you scare people into realizing, they’re never going to get it, even though I hate doing that,” Jessica told the reporter.

I know just how she feels, and you probably do as well, if you have suffered with debilitating Lyme symptoms. Jessica is dedicated to raising awareness of the complications the disease can cause. Evidently she did not show symptoms in the early stages, which is a problem that many of us deal with -- not even suspecting Lyme disease as a cause of our painful and disorienting symptoms until the disease has progressed beyond the early stages. Kudos to her, and we hope she continues to find support in her New Hampshire community, which is located in the hot zone for ticks and Lyme infections.

When you are first diagnosed, you can easily be overwhelmed by information about what to do. What will work, what won't? Who should you consult and who can you trust as a reliable resource?

I agree with Jessica, there is not enough awareness of the serious nature of Lyme disease out there. Like her, I contracted Lyme about 5 or 6 years ago, and my painful symptoms and treatment quickly made it impossible for me to live my life in a normal way. Since then, my mission has also been to help educate people about this disease through sharing my interviews with Lyme disease experts and people who are living normal, healthy lives again, post-Lyme.

My life is now back to normal, thankfully, and my hope is that yours will soon be too. This is a good place to start educating yourself and clear up any confusion. Our list of "10 things you need to know about Lyme," is available immediately, when you sign up for our free newsletter.



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Darryl is back--Listen to his success story

Pro bike racer Darryl is counting the days to an upcoming race in April. Twenty-one months of hardcore antibiotic treatment are now behind him, including IV Rocephin, Zithromax and a go-round of Flagyl and Mepron last summer. 
 
Since this new chapter of life began, Darryl counts among his athletic successes the "Beach and Back" fun bike race, a twenty-six mile, grueling uphill bike course that kept him "in the saddle" for four-and-a-half hours. I don't know about you, but I can hardly stay seated for more than one hour, and that's without peddling of course, without having to stretch and take water breaks. You can hear the surprise in his voice, and the satisfaction at his accomplishment as he describes the effort it took to finish that ride. 
 
Darryl's impressive athletic achievements are no accident. A self-described "numbers guy," he has long been a devout record keeper, tracking his heart rate and other bodily systems with the eagle eye of a master coach. In fact, he is a coach, and takes his role seriously. A handful of Lyme patients have been lucky enough to come into Darryl's orbit, and he helps keep them on track with their Lyme-related needs. Knowing the hell that awaits someone with a positive diagnosis of Lyme disease, he aims to mitigate the bureaucratic and other various challenges that await them. 
 
Some of Darryl's key points for beating Lyme:
 
Be a warrior. Don't allow anything to stop you from seeking treatment. Darryl saw 35 doctors before receiving a positive diagnosis for Lyme. He is passionate about standing up for yourself in the face of stubborn insurance company policies. His advice when your insurance company refuses to pay for tests and/or treatment that you and your doctor know are necessary? Appeal, and stay with it. Do not give up the fight. If you can't do the fighting, get someone who can fight for you until you can. 
 
Be organized and monitor your progress. Keep your medical files together in one place. Statistics such as test results, enzyme counts, heart rate, weight and the dates of measurement are important, and so are their fluctuations. I love this--Darryl uses spreadsheets to track his numbers. Why didn't I think of that? Carefully monitor your progress. Keeping track of meds, supplements and foods on a spreadsheet is a great idea too. 
 
Put yourself first. We hardly even need to mention this one. While it seems like such an obvious point, it is nevertheless quite difficult for a lot of people to pull this one off. Are you the main caretaker for a busy family? Find a way to take time for yourself every single day. Get enough sleep. It takes whatever it takes to get well. Your family might have to adjust, but rest assured they'll be overwhelmed with relief when you get better. 
 
And finally, exercise, exercise, exercise. That's a direct quote. Even Darryl's mom (who also has Lyme) rides the bike he gave her indoors, in front of the telly. Do what you can to sweat out the toxins every day. Build muscle, which will help your immune system build strength. Darryl addresses this whole issue of exercise with compassion for those of us who suffer with crushing fatigue. He's been there too. 
 
The really, really great news? Darryl's better! 
 
Get your water bottle, jump on your stationary bike, hop onto your mini-trampoline and put on your headphones. Listen to Darryl's interview here. 
 
Listen to the entire interview with Darryl for free!

Podcast - This is a long interview, so it may take awhile to load, please be patient.
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Readers write about Lyme brain

"Kmart" sent these comments in response to last week's post:

1 - I once lost my truck key on the job (gardener). I had three people (customers), for thirty five minutes, looking all over their house and property for it. I must have checked my pockets thirty times and even flipped out my front pockets like a rabbit. Yes (you all have done this) while just standing in confusion & embarrassment my stomach fluttered & face grew red as I had to suddenly admit that I found my key in my right front pocket while casually just standing there. Oops, my bad. There is still no way to explain lyme brain to others.

2 - Having read through the protocol, how in the heck is someone with stage 3 suppose to remember all that? I believe any attempt (at a protocol) is a good one for fighting Lyme. Seriously, there is no way I could stay on this as I am still looking for my keys!

***

Success stories usually, if not always, follow failure. The classic example is learning to ride a bike. If it took falling over nine or ten times before you finally got the balance thing down, than those nine or ten times were more about succeeding than failing.

Healing from Lyme has been sort of like that for me. Starting with getting a diagnosis, which doctors kept getting wrong. I've talked to people for the success stories who said that they went to more than 30, or in some cases more than 40 different doctors before getting a correct diagnosis!

It still makes me shiver to think about the dermatologist who wouldn't even look me in the eye while he was examining my skin rash. I'd brought in a notebook with questions I had jotted down, because I knew I wouldn't be able to remember them unless I wrote them down. The minute I opened it and read my first question, he stopped making eye contact with me! It felt as though he saw me as some sort of weirdo to protect himself against. I absolutely did not feel like I was in the supportive hands of a healer. Of course, it didn't help that I stuttered terribly whenever I tried to talk. He was one of the docs who had prescribed prednisone for my "excema." He was sure he was right. I was sure I was getting worse, not better. At that time I had no clue that the medicine itself was making my disease spread inside my body and brain, quickly rendering me unable to think, talk or keep my balance while walking.

Lyme brain can definitely be funny in retrospect, but I know it's absolutely terrifying when you've got it.

Whether your stories are humorous or scary (or both!), I invite you to share one of yours here. You can either email me directly: ldrd.support@gmail.com or put it in the comments.

All good wishes for healing to every one of you,
Suzanne


P.S. Kmart, I know what you mean about remembering the protocol. I kept notebooks full of schedules for when to take which antibiotic or supplement, to take it before meals, between, whether to take it with water or juice, or put it under my tongue, and how many drops of this and that, when to increase or decrease...It got to where I was either taking a medicine or writing about having taken it. Having Lyme is hard -- but healing from Lyme can be just as tough!
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Lyme Disease Mistaken for MS



Getting a correct diagnosis for Lyme disease is a significant step toward getting treatment, yet countless patients are misdiagnosed from the start. Here is a recent account of a North Carolina man who self-diagnosed, after having been put on medication for multiple sclerosis. The article below is from the Raleigh Newsobserver.com, February 19, 2008.

Patients push boundaries of Lyme disease debate.
Two factions hold opposing views on prevalence of tick-borne disease.

Jean P. Fisher, Staff Writer

Even as mounting evidence suggests the state may harbor more tick-borne illness than records indicate, patients with symptoms that match Lyme disease say doctors continue to turn deaf ears to their complaints. They say people are needlessly going untreated or misdiagnosed, leading to advanced illness and even disability. Read more about lyme disease diagnosis.

Dave Tierney of Cary thinks that's what happened to him. Plagued with unexplained fatigue, muscle aches, eye pain and other problems for years, Tierney was diagnosed with multiple sclerosis last year. In June, he left his job as a pilot with Delta Air Lines and began getting long-term disability benefits.

But after researching his symptoms on the Internet, Tierney became convinced he had chronic Lyme disease. An infectious disease doctor and a specialized laboratory test confirmed it. After three months of intravenous antibiotics, Tierney finds his Lyme symptoms much improved and he is back at the controls of an airplane.

"I could have been on MS medicine for the rest of my life," said Tierney, who returned to work this month.

read the entire article here
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Common mistakes in diagnosing and treatment

Deliberations and contestments continue over successful treatment of Lyme disease. Due to the difficulty of getting a correct diagnosis shortly following the initial infection, Lyme patients commonly do not seek treatment until the symptoms become painful. Not everyone gets the bullseye rash! At the present, most physicians do not know how best to diagnose Lyme. If you or a loved one are suffering from symptoms you suspect may be associated with the disease, it is very important to seek a Lyme disease expert. Incorrect diagnosis, and subsequently, inappropriate subscription medication, can lead to serious complications for the person with an underlying infection due to undetected Borrelia bacteria.
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Suspecting Lyme disease

Lyme's ability to mimic hundreds of other conditions complicates diagnosis of the disease. When is a skin rash just a skin rash? When it is cause for concern about Lyme disease? What types of rashes are suspect? Clinically diagnosing Lyme can be a complex process requiring intuitive, educated, Lyme literate physicians who won't simply dismiss seemingly unrelated symptoms.
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