Lyme Disease –Why Lyme is the Mystery Disease

by Dr. Leo Galland

Lyme Disease –Why Lyme is the Mystery Disease

Summer is peak season for transmission of Lyme disease.

 

The only known transporter of Lyme disease 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 and Lyme disease.

 

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 3 different autoimmune diseases, each by a top specialist:

 

  1. Crohn’s disease, an inflammatory disorder of the intestinal tract, causing abdominal pain and diarrhea.
  2.  

  3. Iritis, an inflammatory disorder of the eyes, causing eye pain and blurred vision.
  4.  

  5. 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.

 

Tick Bite Leads to Lyme Disease

 

Anne had suffered a tick bite 5 years ago, about 6 months before the onset of her arthritis, and had been treated with an antibiotic, doxycycline, for 3 weeks. Subsequent testing of her blood for antibodies to the Lyme bacteria were negative on 4 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.

 

Scientists now point to a new source of Lyme disease that could be worse than deer: Lyme Disease – Risk of Lyme Disease Expands

 

The Infectious Diseases Society of America has stated that 3 weeks of antibiotics will cure “over 95 per cent” of people with Lyme disease. But many experts have challenged these treatment guidelines for Lyme disease 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 5 per cent 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 of Lyme disease 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 per cent, 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 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 she had experienced for the past 5 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.

 

Don’t miss the movie that reveals the impact of Lyme disease: 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, 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.

 

  • 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.

 

To learn about supporting the fight against Lyme disease visit Turn the Corner Foundation

 

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, MD

 

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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.

by Dr. Leo Galland

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

 

11 thoughts on “Lyme Disease –Why Lyme is the Mystery Disease

  1. Morgana

    I have been checked for over 20 years every 6months to a year with a Western Blot for Lyme Disease (and, not to take issue, but it is not just the deer tick: now the brown dog tick, the lone star tick and the wood tick ALL carry Lyme Disease). In 1989 I was diagnosed with SLE. Some years later after having to undergo re-vaccination (to which I heavily protested) for childhood diseases to re-enter college, everything changed including my diagnosis which is now: Limited Scleroderma with an RA overlay, secondary fibromyalgia, cognitive dysfunction and neuro issues..blahblah. Every single Western Blot has come back negative. I previously lived on Eastern Long Island for over 20 years, and now live in NY’s second biggest Lyme county: Columbia. What do YOU think? I currently am on Enbrel; painkillers; muscle relaxers; anti-anxiety and anti-depressant (which is actually for the long muscle pain). At times, I have been knocked down with something that gives me a fever spike, CRUSHING pain as if 20 semi’s are parked on top of me and slashing muscle pain as if Freddie Kruger were rippuing at my muscles. Thank you.

  2. Lauren E.

    Hi everyone! My journey with Lyme has been a tough one. Im 23 years old and I was diagnosed with Lyme roughly 2 years ago. I was experiencing all sorts of unexplained symptoms for a year (irregular heartbeat, hot ears, fatigue, terrible headaches). Not a single doctor could rule anything out. My Dad was also diagnosed with lyme about 4 years ago and he was in very bad shape. He was on full bed rest, had to leave his job and was completely incapacitated. No doctor believed it was Lyme but I asked to be tested anyway because of my dad. Sure enough, my test came back positive! I am no longer on prescription antibiotics and my health is great. I still continue to take a lot of herbs, vitamins, supplements and I detox in a sauna a few times a week. I believe in a multi faceted approach. It’s all about diet, exercise plus taking the right herbs.

  3. Steven Muse

    We live in Columbia County in NY state which has the highest number of Lyme cases thus far including my wife, testing positive and now on ling term anti-biotic treatment and myself, testing negative although bitten by three ticks in the last three years. Because of symptoms my doctor has also put me on long term regimen of anti-biotics with good results.

    My wife was diagnosed with several diseases over a three year period before being tested for Lyme disease and because of protocol was only treated with doxycycline for a short time. Her symptoms did not get better but intensified to the point of disabling her completely. We went to many doctors and finally one traditional infectious disease doctor told her that he knew that she had chronic Lyme but could not put it on her chart and he referred her to a Lyme treater and things have been improving slowly but steadily over the last year.

    Thank you for your article!

  4. Laurie O.

    Thank you for your great article on Lyme. I got Lyme Aug 2009.Diagnosed March 2010. 3 weeks doxycycline. Another Western Blot and told I am cured. I am not cured! For the past 2 years I have been suffering from flare ups of extreme fatigue, pain in my body all over, ear pain, ear sounds and ringing, swollen lymph nodes in neck and ears, red throat, digestive issues, twitching in hands, and legs, pain under my feet like walking on glass, burning eyes, I sleep 12 hours a day and its not enough.The list can go on but you get my point. My Lyme now shows 3 bands positive for Lyme but that’s not enough to say I have lyme and get more treatment. Then why was I perfectly healthy BEFORE the Lyme diagnosis and I have been sick ever since? I am now diagnosed with CFS/Chronic fatigue syndrome which is a wastebasket diagnosis. I suffer with flare ups twice a month lasting 4-9 days each. This has changed my life and I fear it will go on forever. How do we get doctors to treat us with more antibiotics when the govt says we dont have anything wrong with us???? Help!

  5. brenda p

    thank u for this information. so many people are unaware of all that can happen to you. 05 i tested pos for lyme treated with doxi and didn’t think about it again. by 07 my whole body broke down. being a single parent i would force myself to work after numerous docter visits i tested 9 bands on lyme and babisia. the worst part for me was my bladder pain [like a severe uti that never leaves]headaches,fatique[who doesn’t have that],neck rib,joint(fingers,toes,arms,legs etc.)stomach distension,blurred vision,ear buzzing,pain,fullness,sinus,soles of feet(feels like needles and bruised)swollen all over, weight gain.9hospital visits 5 years later 3 iv lines still on oral anitbotics doing much better but always know it is 1 set back away or 1 bite.

  6. Frank A. Meyer

    Thank you for your article. My wife Erika has been diagnosed with ALS. Her symptoms suggested that she may have somthing else. I personnaly saw the tell tale bullseye bite. Her story is too long to tell here. We did seek help from a lyme literate doctor, her western block had three of the five bars which indicates lyme. However, the mainstream medical system requires that you have all five bars. We are on medicare and as you probably know medicare does not cover lyme desease. She is going into her fourth year of illness, and has experienced all of the symtoms mentioned by the others who have responded. I would suggest a book which perhaps some of your responders have read. Lab 257. Thank you.

  7. Karen M

    Thank you for this informative and knowledgeable article on Lyme disease. I was misdiagnosed for 5 years while my symptoms got worse and continued to expand to include: fatigue, terrible joint pain, hair loss, memory loss, confusion, migraines, dizziness, muscle pain and weakness, etc. Early in the symptom accumulation, I was prescribed prednisone…5 different times. I know now that this probably caused my symptoms to get much worse with each dose. I am lucky to have found a wonderful Lyme literate doctor, #LLMD , who immediately began an aggressive treatment plan. Thankfully, my symptoms have slowly gotten better, although I have reached a plateau now. I am about to start a much more aggressive treatment plan to try and progress my healing some more. I have some permanent damage to nerves, memory, ability to concentrate and disfigured joints/appendages. It is SO important to get the truth out there so it can help others recognize the possibility of potential Lyme disease based on their symptoms. Thanks again.

  8. Brandy

    I am so sick today, I havent been diagnosed with Lyme but have all the symptoms. Its been a year of pain and illness. I am 39. I have severe back pain, eye pain, so tired, temp is up, rib pain, hard to breath. Docs say RA, peripheral neuropathy, anemia and psych, psych, psych! My symtoms are all over the place and are transient so i must seem disingenuous. I have been in medicine since the early 90s. Docters have changed so much. They seem so paranoid. They used to listen , believe and then treat. Now I feel like I am going to court with every appt. Somedays I feel like I may not make it thru, prayer is all I have right now. HELP!!!!!

  9. charlotte

    The Marshall Protocol has worked for many Lyme sufferers as well as for suffers of RA, AlS, Sjogrens etc. Join the website at :
    http://www.marshallprotocol.com/

    and email them a request for treating doctors in your area. Phase 1 of the trials have been completed.There are many people who are doing the treatment which consists of low dose Doxycycline as higher doses cause Herxheimer reactions.The thinking is that the bacteria hide INSIDE cells for years and hijack the Vitamin D receptor.

    http://www.lymebook.com/marshall-protocol
    They have done research and have published and given seminars. See more here:
    http://bacteriality.com/about-the-mp/

  10. Becky Fowler

    We live in a highly endemic area and I have been infected twice in two years — once accompanied by the classic bulls eye rash and the second by an atypical (but still characteristic) rash. Just started doxy again, bracing for the herx. I am guardedly optimistic, but what about later if/when my lab results stop “cooperating”? I also worry, a lot, for my son growing up in this area….

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