Basics – Treatment

Q. I had a bull's eye rash and other symptoms, but my doctor said my blood tests showed I didn't have LD, so it must be something else, right?
Q. What happens if Lyme disease is not properly treated?
Q. What is the proper treatment for Lyme disease?
Q. What about 'alternative' treatments?
Q. How does my doctor know when I am cured?
Q. Isn't there a vaccine for Lyme disease?
Q. Once you have had Lyme disease, you're immune right?
Q. Why haven't I heard much about Lyme disease until recently?
Q. How many cases of Lyme disease are there really?
Q. Why don't doctors know more about Lyme disease?
Q. What can be done to address these issues of poor tests and uninformed doctors?
Q. I had a bull's eye rash and other symptoms, but my doctor said my blood tests showed I didn't have LD, so it must be something else, right?

A.  Almost certainly not! This scenario has caused many people to needlessly suffer for months or years. Left untreated, LD can be a devastating disease. There are few conditions that mimic the LD rash. Lyme-literate doctors suggest starting immediate antibiotic treatment, regardless of the results of any tests.

Often a person suffering from chronic, unsuspected Lyme disease will be diagnosed as having something else, such as chronic fatigue syndrome, fibromyalgia, lupus, multiple sclerosis, Parkinson’s disease, Alzheimer’s disease, ALS, Crohn’s disease, carpal tunnel syndrome, temporomandibular joint disorder (TMJ), and a wide variety of psychological or psychiatric disorders. Doctors often mistake tick bites for spider bites, but spider bites are actually an uncommon cause of illness. In areas where LD is prevalent, it should be seriously considered before a doctor denies antibiotic treatment.

Q. What happens if Lyme disease is not properly treated?

A. This varies tremendously among individuals. Some people may never have a recurrence of symptoms, while others may become seriously disabled from LD that is untreated or inadequately treated. Serious symptoms can appear immediately or they could take months or years to develop. The most common symptoms are unrelenting fatigue; joint or muscle pain (particularly in the neck, knee, back, or foot); vision or hearing abnormalities; numbness or tingling, particularly at the extremities; facial paralysis; heart damage; psychological disturbances; and stomach problems. (There is an extensive checklist of symptoms in our booklet, and on our website. Consider bringing this list to your doctor if you suspect you have LD.)

Untreated LD can result in neurological disorders, crippling arthritis, heart damage, blindness, deafness, psychiatric or psychological disorders, or death.

Q. What is the proper treatment for Lyme disease?

A. Antibiotic treatment is the simple answer. But the specific answer is still unknown. If they are treated immediately after a tick bite, many patients seem to obtain elimination of symptoms after a course of six weeks of an oral antibiotic like doxycycline. However, it is not known if this treatment permanently cures the disease. If you had a tick bite and a rash, knowledgeable physicians feel that you should be treated with antibiotics as long as symptoms persist. If there is any recurrence of symptoms after treatment, most Lyme-experienced doctors would put you on another course of antibiotics.

A patient who seems to be symptom-free should be vigilant in watching for any recurrence, and so should his or her doctor. Relapses do occur. At the other end of the spectrum, some patients find no relief at all from a short course of antibiotics, particularly if they have co-infections. Many long-term LD patients given the standard oral antibiotic treatment seem to do fine for years and then suddenly experience the same or new symptoms. Often a stressful life event such as a car accident, head injury, surgery, divorce, or a death in the family can trigger reemergence of symptoms mimicking a new infection. Some patients obtain relief with another course of oral antibiotics, while others require long-term treatment with oral, intravenous (IV), or injected antibiotics. Because of the complexity of the Lyme bacteria’s life cycle, combinations of antibiotics are often necessary.

In addition to medication, Lyme patients need to develop a good program of exercise and nutrition. Patients on antibiotics need to take probiotics such as acidophilus, which replaces the good bacteria (killed by antibiotics) that are necessary for the body’s digestive system to function properly. Many patients also take supplements that help boost the immune system. Consult with your physician on all non-prescription
treatments.

Q. What about 'alternative' treatments?

A. Many ‘alternative’ treatments for Lyme disease are available. Some, like acupuncture, chiropractic, massage therapy, hyperbaric oxygen treatment, and osteopathy are regulated and considered safe. Many patients benefit from these. Other alternatives are not proven, or could prove to be harmful. These include “Rife Machine” and similar electromagnetic devices, extreme diets, “fever treatment.” etc. Although these fringe treatments could prove to have some validity, further research is needed. You should discuss any of these alternatives with your doctor before starting on one.

Q. How does my doctor know when I am cured?

A. Many doctors who treat LD patients avoid using the term “cured” because of the possibility of a relapse in the future. However, most Lyme-literate doctors believe that treatment of persistent infection should continue for at least two months after symptoms have disappeared. Both the patient and the doctor should be prepared to resume treatment if symptoms recur. Patients who do not get well with Lyme treatment may have co-infections (see Tick-borne Diseases).

Q. Isn't there a vaccine for Lyme disease?

A. There was one, but the manufacturer took it off the market in 2002. Evidence indicated that people with a certain gene might develop an autoimmune arthritic disease from the vaccine. About 30% of the population has this gene, and taking the vaccine could result in severe arthritis. There is no known cure for this condition. The vaccine offered no protection against other tick-borne disease co-infections that frequently accompany LD. The vaccine was only about 75% effective and it was not known how long the partial immunity lasted, even with booster shots. Perhaps a safe and effective vaccine will be developed in the future, but for now, the only way to avoid contracting Lyme disease is to avoid ticks and the other possible sources of infection.

Q. Once you have had Lyme disease, you're immune right?

A. No. You can get Lyme over and over from new tick bites. Each new tick bite can infect you with a new case of Lyme disease or other tick-borne diseases. Some Lyme doctors believe that each subsequent infection makes symptoms more severe and treatment more difficult.

Q. Why haven't I heard much about Lyme disease until recently?

A. Lyme disease and its variants have been known throughout the world for at least 120 years (often by different names). There are hundreds of identified strains of the bacteria that cause LD, dozens of them in the U.S. There is proof that prehistoric people were infected with it. Also, patients with LD may have been undiagnosed or misdiagnosed before doctors became more knowledgeable.

However, it does seem that Lyme disease is much more prevalent now than it was in the past. The main “reservoir” for Lyme disease is the white-footed mouse and other small animals. The Lyme spirochetes live in the blood of the mouse and are passed to a tick when it feeds on an infected animal.

The white-tailed deer is a major host for the ticks that carry LD, and the deer ensure that the ticks have a comfortable place to live and breed. Many areas of the U.S. have had a tremendous increase in the deer population in recent years, so there may be many more ticks in these environments. When the deer population is reduced, the tick population declines in a year or two, and the incidence of LD drops.

The loss of diversity in our wildlife means that ticks are more likely to attach to the mice that harbor the Lyme bacteria. Birds are known to transport ticks to new areas.

Q. How many cases of Lyme disease are there really?

A. No one really knows. Some studies indicate that perhaps only 1 in 75 cases gets into the CDC official statistics. It could be even fewer than that. Many state health departments have decided to only process a portion of the reports, and other states have stopped reporting altogether. We do know that actual number of cases is far, far higher than the 30,000 per year that appear in the CDC statistics.

Research by the CDC in 2014 indicated that the actual number of cases is between 300,000 and 420,000 annually.

Q. Why don't doctors know more about Lyme disease?

A. Some doctors are very up-to-date on the latest research on LD, but many are not. Many doctors are taught that LD is rare and easily-cured and they may not think that it is a serious disease. With thousands of diseases and conditions to learn about, Lyme doesn’t seem to rank very high with the majority of doctors, even though it is the most common vector-borne (insect transmitted) infectious disease in the U.S. Nevertheless, it is a major medical problem in the U.S., resulting in billions of dollars in expenses and lost time from work.

Q. What can be done to address these issues of poor tests and uninformed doctors?

A. Organizations such as the International Lyme and Associated Diseases Society (ILADS, an organization of LD health professionals), the Lyme Disease Association, the Lyme Disease Association of Southeastern Pennsylvania, LymeDisease.org, and many others have programs that are aimed at educating the public and doctors on the latest information about the disease. These organizations support state and federal legislation that would fund research into prevention, more accurate tests, and improved treatments for Lyme disease and co-infections.

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