Lyme Disease Symptoms: Key Facts About This Mysterious Illness

Summer is peak season for transmission of Lyme disease.

The only known transporter of Lyme bacteria -- the deer tick -- goes through the most infectious stage of its life cycle in the summer.

But you don't need to be in contact with a deer to get a deer tick bite. Deer ticks can hitch a ride on small animals and land right in your backyard.

Here is a case study that highlights why Lyme disease is a mystery illness:

Anne had been diagnosed with three different autoimmune diseases, each by a top specialist:

1. Crohn's disease, an inflammatory disorder of the intestinal tract that causes abdominal pain and diarrhea.
2. Iritis, an inflammatory disorder of the eyes that causes eye pain and blurred vision.
3. Spondyloarthritis, an inflammatory disease that attacks the spine and other joints.

Two of the specialists wanted to treat her with immune suppressive drugs, a decision that would have been counterproductive, given the fact that her real diagnosis was Lyme disease -- an infection spread by a tick bite.

Anne had suffered a tick bite five years ago, about six months before the onset of her arthritis, and had been treated with an antibiotic, doxycycline, for three weeks. Subsequent testing of her blood for antibodies to the Lyme bacteria were negative on four separate occasions. Her doctors, therefore, discounted the idea that Lyme disease could be causing her chronic illness.

Two Key Points About Lyme Disease

• Active Lyme disease can persist after antibiotic therapy.
• Active Lyme disease may occur in the absence of positive blood antibody tests. This condition, called false negative serology, may be more likely in people who received antibiotics very early in the course of infection, as had Anne.

Learn more about the source of Lyme from a new book: Lyme Disease -- Risk of Lyme Disease Expands

The Infectious Diseases Society of America has stated that three weeks of antibiotics will cure "over 95 percent" of people with Lyme disease. But many experts have challenged these treatment guidelines as being inaccurate. As I see it, even if the Infectious Diseases Society of America's guidelines are accurate, they are grossly inadequate: a failure rate approaching five percent for a curable disease is unacceptable.

New Cases of Lyme Disease

Let's check the math: At present there are about 30,000 new cases of Lyme disease reported to state health departments each year. Everyone acknowledges that under-reporting is the rule, so that there are undoubtedly many more cases of Lyme disease acquired in the U.S. every year. The annual incidence is probably more than 100,000 new cases each year.

Lyme disease has been with us for at least 30 years. So, even if the failure rate of the IDSA guidelines is only 1 to 4 percent, as claimed, there are tens of thousands of Americans living with incompletely treated Lyme disease. Anne was one of these and, like so many others, saw many competent physicians for her complaints without the correct diagnosis being made.

Anne Sought Evaluation for a Different Condition

She came to see me not for evaluating Lyme disease, but to find a nutritional therapy for Crohn's disease because she did not want to take the medication her gastroenterologist was recommending. Although her digestive complaints were controlled by a special diet and her iritis could be prevented by supplements of curcumin, an herbal extract, the cycles of joint and muscle pain and fatigue that she had experienced for the past five years continued.

I ordered some detailed blood tests to evaluate the possibility that she may still be suffering from active Lyme disease. The evidence was inconclusive, but strong enough that she and I agreed that further antibiotic therapy was warranted.

Like many other patients with Lyme disease who start antibiotic therapy, Anne originally felt worse with antibiotics. Fortunately, this reaction, called a "Herxheimer response," only lasted for about a week. Within a month, it had become clear that antibiotics, not immune suppressant drugs, were the right therapy for her. Although not totally well, Anne no longer has any evidence of Crohn's disease, iritis or spondyloarthritis. What appeared to be autoimmune diseases were the deceptive manifestations of a chronic infection of Lyme disease.

To Watch: Under Our Skin: Lyme Disease Film

Essential Facts About Lyme Disease

• It is an infection with a bacteria called Borrelia burgdorferi, transmitted by the bite of a deer tick.
• The tick is so small -- sometimes as small as a poppy seed -- that you may not be aware of a tick bite.
• Symptoms of Lyme disease may occur within days or may not occur for many weeks after infection.
• Lyme disease may involve any part of your body: skin, joints, muscles, the nervous system, the heart or the intestinal tract.
• Laboratory tests for Lyme disease are imperfect and can be misleading.
• Prompt treatment of early infection improves the likelihood of cure, but persistent chronic infection may occur and can take many forms. It is important to note though, that some people with chronic symptoms confuse them for chronic Lyme disease. It's ultimately important to explore all possible explanations for these sorts of symptoms.
• The possibility of Lyme disease should be carefully considered in anyone with unexplained fatigue, fever or muscle pain, in people with an acute unexplained change in emotional or cognitive function, and in everyone given a diagnosis of autoimmune or degenerative neurological disease.

Many people feel that their thoughts or feelings about their condition, particularly with Lyme, have been brushed off by conventional medicine. Get my take on treating the whole person, and how to talk with your doctor in my article Is Conventional Medicine Ignoring You?

Now I'd like to hear from you:

Do you have unexplained symptoms? Has your doctor considered Lyme Disease?

Have you had any treatments? Did they help?

Please let me know your thoughts by posting a comment below.

Best Health,
Leo Galland, M.D.

Important: Share the Health with your friends and family by forwarding this article to them, and sharing on Facebook.

Leo Galland, M.D. is a board-certified internist, author and internationally recognized leader in integrated medicine. Dr. Galland is the founder of Pill Advised, a web application for learning about medications, supplements and food. Sign up for FREE to discover how your medications and vitamins interact. Watch his videos on YouTube and join the Pill Advised Facebook page.

References and Further Reading

Dr. Joseph Burrascano's Diagnostic Criteria on the California Lyme Disease Association Website

N Engl J Med. 1988 Dec 1;319(22):1441-6. "Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi." Dattwyler RJ, Volkman DJ, Luft BJ, Halperin JJ, Thomas J, Golightly MG.

Infection. 1989 Nov-Dec;17(6):355-9. "Survival of Borrelia burgdorferi in antibiotically treated patients with Lyme borreliosis." Preac-Mursic V, Weber K, Pfister HW, Wilske B, Gross B, Baumann A, Prokop J.

Am J Clin Pathol. 1996 May;105(5):647-54. "Polymerase chain reaction detection of Lyme disease: correlation with clinical manifestations and serologic responses." Mouritsen CL, Wittwer CT, Litwin CM, Yang L, Weis JJ, Martins TB, Jaskowski TD, Hill HR.

Expert Rev Anti Infect Ther. 2004;2(1 Suppl):S1-13. "Evidence-based guidelines for the management of Lyme disease." Cameron D, Gaito A, Harris N, Bach G, Bellovin S, Bock K, Bock S, Burrascano J, Dickey C, Horowitz R, Phillips S, Meer-Scherrer L, Raxlen B, Sherr V, Smith H, Smith P, Stricker R; ILADS Working Group.

Interdiscip Perspect Infect Dis. 2010; 2010: 876450. "Proof That Chronic Lyme Disease Exists."
Daniel J. Cameron.

"Chronic Lyme An Evidence-Based Review", Steven Phillips, MD. ILADS 2008

This information is provided for general educational purposes only and is not intended to constitute (i) medical advice or counseling, (ii) the practice of medicine or the provision of health care diagnosis or treatment, (iii) or the creation of a physician-patient relationship. If you have or suspect that you have a medical problem, contact your doctor promptly.

 

 

 

Follow Leo Galland, M.D. on Twitter: www.twitter.com/Pilladvised/

Comments

[LOSESTRESSNOW]

04:32 PM on 07/12/2011

Thanks for this post, Dr. Galland. Your 'essential facts' are critical information as so many persons have not heard this 'big picture' viewpoint regarding Lyme. In my own family experience, the combined efforts of overall diet changes (gluten-free, dairy-free) plus select nutraceuticals and antibiotics have brought good results and I hope those posting here with their own stories will find hope and empowerment through the info you've presented. I recommend this site as well for continuing Lyme info - http://lymeinfohub.devhub.com

[skidz57]

03:27 PM on 07/06/2011

I got my bite in November of 2009, it was a couple of months after in which I started getting flu like conditions which would come and go in severity. As the symptoms continued, they grew. I was in and out of the hospital at one point with severe head and neck pain, a spinal was done and in turn I was given a bag of ceftriaxone and an other antibiotic in the event that it was meningitus. Two day's after the medicine all symptoms left my body!! I had a whole summer without pain. October 2010 all came crashing down!!!! I got so sick, I was sent to an Eye Ear Nose and Throat doctor in NY who treated me for a while with oral doxy until I got to sick for him to contiue on, it was at this point that I was given two names, one of which was Dr. Leo Galland, quite frankly it was because of cost I chose the other Doctor who has since been treating me, starting with doxy, then Biaxon and Plaquinel, and now intraveniously with Ceftriaxone. Unfortunately the lyme disease has now made it's way well into my CNS and has affected the way I think, ...or don't, not to mention horrible tinnitus, pain in the ears, body pain in the mid section, shoulders, legs and head and has wreaked havock with my emotional state!

[Joanne Drayson]

11:01 AM on 07/06/2011

I am now in touch with about 28 other patients in my locality who have chronic lyme disease and are getting better on long term antibiotics but our HPA say that IDSA guidelines are authoritative and most patients have to pay privately for treatment. Even the iDSA said in their final report following their review that European species were different than USA and presented differently. How then can we be denied treatment based on their inconclusive opinions.
The Institute of Medicine in their summing up recently said that 'Significant Gaps Remain In Understanding of Lyme Disease' far too soon then to be denying patients treatment choices.

It doesn't take much effort for an investagative journalist to see what is going on but clearly they choose to follow the party line leaving thousands of patients struggling with ill health when appropriate treatments can help. It is not said lightly when such as Kenneth Leigner MD describes it as Tuskegee x 10000
http://www.ilads.org/news/lyme_press_releases/iompanel_lyme.html

Patients are not stupid we can read and we can monitor our symptoms and know what helps and what doesn't help. This controversy was described to me by one consultant as the biggest medical disgrace. It doesn't even make economic sense when governments want to get sick people back to work.

[Joanne Drayson]

11:00 AM on 07/06/2011

An excellent article on Lyme disease what a pity our media in the UK are blinkered and can only see what HPA is spoon feeding our doctors when there is so much research available that supports ILADS guidelines- even the IDSA guideline authors contributed to some of that research which now they deny.
It was a chance course of antibiotics which led my GP to suspect Lyme Disease I had thought we couldn't get it in the UK how wrong was I. I had attended the surgery at times of bites, bulls eye rashes, summer flu' and migrating arthralgias before a chronic arthritis and muscle weakness set in. I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, musculo skeletal disease, polymyalgia rheumatica and had seen 5 doctors and 3 rheumatologists over a period of 4 years. By then the couple of weeks antibiotics as per IDSA did not clear my infection. In fact it was nearly 4 years of antibiotics but I now have no pain, no arthritis and no muscle weakness how many people with my symptoms ever make such a recovery. At my worst I had difficulty standing from a chair and walking across a room and for 3 1/2 years I was unable to walk up or down stairs properly now I can garden and cycle again.

I

[caratay]

12:02 AM on 07/06/2011

Dr Galland, I have been ill for over 10 years and have lost everything because of it. After finally being diagnosed and treated via IV for 6 months in 2005, I am being retreated, however I have difficulty tolerating many antibiotics, have myriad neurological symptoms, and clearly have sustained much damage in the interim. I know of many more people like myself, who are in desperate need of effective treatment. Thank you for this valuable contribution to the study and treatment of Chronic Lyme Disease.

[Tina J Garcia]

02:45 AM on 07/05/2011

Thanks so much for the informative and extremely accurate article on Lyme disease, Dr. Galland. As one of two patient representatives selected to speak on behalf of patients at the 2009 IDSA Review Panel Hearing, I am grateful and relieved to see accurate medical information related to Lyme disease published in the Huffington Post and AOL Healthy Living. It is a breath of fresh air compared to the stagnant disinformation disseminated by the Lyme Medical Cartel. Thank you very much. You are performing a great service for physicians who need to learn the truth about Lyme infection, for patients who have been victimized by the disinformation campaign and for the public who is receiving a "heads up" in case they or someone they know contracts Lyme in the future.

Tina J. Garcia
Founder
Lyme Education Awareness Program
www.leaparizona.com

[Philip Sampson]

11:47 AM on 07/03/2011

If the test for lyme can be inconclusive, what tests do you do? and how do you read the results. I ask as I live in Honduras and we are infested with ticks.

[Jilly Lapin]

01:12 PM on 07/02/2011

Lyme disease tick adapts to life on the (fragmented) prairie--East Central Illinois

http://news.illinois.edu/news/11/0621lyme_J_Rydzewski_NohraMateus-Pinilla.html

[Jilly Lapin]

01:03 PM on 07/02/2011

Guess I couldn't post my lab results. Oh well. Seroconversion IMO on IGG, WB (and persistent +ve result with IGM, WB). Tests done one month apart (second one done to prove to me that the first one was a fluke--so much for that).

[Jilly Lapin]

12:55 PM on 07/02/2011

cont'd

Ya, I am now 'that patient.' I'm sorry--none of the medical professionals who has seen me would be ok with this if they were in my shoes. They all look at me like I'm crazy for wanting something done 'timely'--like they would really sit around for months on end content with their neurological symptoms (*neurological*! I used to work in an allied health profession in the area of adult neuro acute care/rehab. It isn't easy to 'get back' lost function--depending on the cause, but, just sitting around with zip, when from the get-go you sought ways to prevent permanent damage, is beyond frustrating). Mid March. My dog with me in a park with natural prairie restoration habitat (not unlike the 'prairie' habitat studied, as per above link--which is one county over--the one in which they discovered voles carrying Bb infected ticks). Mid March. My dog digs up the vole tunnels in our backyard (which is boundaried by tall grass/weeds and a cornfield). Very late March symptoms start--including rash (treated with antibiotic Rx cream----speculation that it was a spider bite). I don't mean to rag on the doctors. Most (not all) of them have been very nice. However, they all have seemed completely closed to the possibility of a case of Lyme disease being contracted in this particular county. What's it going to take? Maybe somebody coming in with tick still attached and having it tested.

[Jilly Lapin]

12:49 PM on 07/02/2011

cont'd

Endemic per CDC = 2 definite cases (that originated in this county--the place doesn't have to be loaded with cases, although the health professionals here sure make it sound that way). The doctors here seem unaware of the research pertinent to the very geographical region in which they practice (and/or might expect to treat patients from): http://www.eurekalert.org/pub_releases/2011-06/uoia-ldt062111.php

Here and now, on the 'prairie.' Adapted to new (reservoir) hosts. Voles (look beyond the standard deer and forest thing). Published 2011----but the data were collected long before that. A rate of spread of 2 counties per year? Why is this not not a Lyme endemic area on the basis of infected tick-population vs. human cases? Maybe because nobody has tested it yet (I believe that is the focus of some research this summer, though).

[Jilly Lapin]

12:47 PM on 07/02/2011

What do I do??? I cannot afford to see a Lyme Literate doctor and the latest from the medical professionals (2 Neurologists, 2 Gastroenterologists,1 Infectious Disease, GP, CNP) here is that 'this tingling--that is anxiety----go see a Psychiatrist'

[H P]

03:19 PM on 06/25/2011

Doctors don't believe me. Two bites this year where I developed 2 rings around the bite. One on my side, another bite on my foot. Legs tired and sore almost all the time. I have sometimes swelling of my ankles. Doctor says that is a change in medication I am taking for High Blood Pressure.
I was treated last year with the 14 day anti-biotic treatment. My work takes me outside. For the past 2 years I have gotten 20+ tic bits each year.

[lisakaz2]

09:37 PM on 06/26/2011

Go to a Lyme Literate Medical Doctor. Not being believed is typical. Saves some practices their insurance affiliation because it saves that company from medical treatment costs. A 14-day treatment isn't enough. I got similar and have the neurological damage to prove its inadequacy. I had a doctor not even recommend an Infectious Disease doctor, telling me I didn't have it, even though she confessed to not knowing much about Lyme (I knew more than she did which says to me that her dismissing me is bogus -- how can she claim to know I don't have it when she claims ignorance of it). I had to drive 5 hrs round trip to a different state to get treatment, which was better than nothing.

[Stuart Lamb]

01:37 PM on 06/24/2011

Maryland, neighborhood backs to woods w/wildlife. I garden in the yard, compost in the woods, etc. A few weeks ago was crawling in grass pulling weeds in shorts and probably picked up a deer tick bite on back of knee. Never felt it, never saw it until over a week later when my wife saw an ever growing dark splotch on back of knee, dark and bruised. High fever (102 range) came on over days probably a week or more after the bite, not sure how high it went. Headache, neck ache, cycles of fever sweat outs and then rising again, day two was 2-3 hour cycles and yet NO regular "flu" symptoms. I went to Patient First in Laurel for a strep test and even though I showed the tech and the doctor the bug bite area they totally missed the diagnosis. Prescribed a generic Augmentin 875mg 2x day for a week. This could have been catastrophic, hiding symptoms, since it began to reduce the bite area and alleviate the fever and symptoms. Primary doc did the blood test but said, it could be an old positive or negative so you MUST do the full treatment, as soon as possible. I'm switched to Doxycycline for 21 days to kill it off (proper solution). Don't screw this up, if you see the ever worsening bug bite that doesn't itch or bother you and you get a bad fever, go get on this simple drug therapy without any downside.

[Amanda Hoshimova]

12:29 AM on 06/24/2011

Thank you for this article, it's good to see some updated information on Lyme Disease.

I was diagnosed in 2008 with Lyme Disease, after complaining of severe joint pain in my knees, at the age of 23. I was luckily located in Boston with an extremely competent doctor, but since returning to New York City, I haven't had much luck finding a doctor who can tell me about what to expect. I was put on antibiotics in 2008, and am again on them currently. Apparently, my case is "chronic", and after diagnosis, I was finally able to realize that my marginal (but noticeable and frustrating) memory loss was from the Lyme Disease. I have no idea how I contracted this disease as I'm from Brooklyn and not much of a camper, but somehow it happened and now I'm terrified that the rest of my academic career (I'm a PhD student) will deteriorate, along with my memory.

My main concerns, and I was hoping you could help - is memory loss and nerve damage (such as the pain in my knees - I mean, I'm 26 now, not 86, I don't want to spend the rest of my life in pain after only 10 minutes on the treadmill) reversible? Also, how can I find Lyme specialists in my area - is there some sort of database? Finally is it known what the long term effects are (i.e., what can I expect 30 years as a result of this disease), if any?

[KarlaL]

08:09 AM on 06/24/2011

There are several ways to locate a Lyme Literate MD in your area. You can ask for references from your state on-line yahoo support group at [e-mail]. You can contact your local Lyme disease support group: http://www.lymenet.org/SupportGroups/. The Lyme Disease Association has a doctor referral page: http://www.lymediseaseassociation.org/. ILADS (International Lyme and Associated Disease Society) may be able to give you a physician referral: http://www.ilads.org/.

[Amanda Hoshimova]

11:45 PM on 06/28/2011

Thank you for the information, it is much appreciated!