Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

MK Notes:
Finally! The national CFIDS community begins to look at Lyme disease! I was first diagnosed with CFS and FM in 1991; one of the rule-outs was an ELISA test for Lyme disease. In 2002, I tested positive for Babesia, one of the other organism that is commonly found living in the same ticks as Borrelia, the organism that causes Lyme disease, and equivocal for Borrelia, using the Western blot. After seven months on high doses of doxycycline for the Borrelia, many of my Lyme disease/CFIDS symptoms had abated. As a result of my experience in coming up positive for one of the common Borrelia co-infections, a growing number of people in the local CFS & FM support group started getting tested, most coming up positive for at least one, most with two or three coinfections. How many more people around the world are not getting treated for tickborne infections? How many doctors and support groups are ignoring the evidence that is emerging from doctors and labs who refused to toe the CDC, Harvard, Yale and UC San Francisco line that if you are still sick weeks or years later, or after 3 weeks of insufficient doses of antibiotics, you can't have Lyme, so it must be all in your head? Haven't we heard this enough?

Throughout this article, I will occasionally insert my own comments and links [MK Notes:...]. My comments are my own, not necessarily the author of this article nor of the CAA.

Chronic Lyme disease is raising baffling scientific questions for clinicians and researchers. Patients are also confused since overlapping symptoms make it difficult to determine if they have CFIDS, FM or persistent Lyme disease. Here, one clinician and Lyme expert weighs in on the Lyme controversy.

Clinicians and researchers are involved in a debate over the existence of persistent or chronic Lyme disease. Some doctors classify Lyme disease as chronic when its symptoms persist even after antibiotic treatment therapy. Other clinicians and researchers believe there is no such thing as chronic Lyme, but that an initial Lyme infection may have triggered the onset of chronic fatigue and immune dysfunction syndrome (CFIDS) or fibromyalgia (FM). Still another group question the plausibility of Lyme disease being a causative factor in CFIDS and FM.

Lyme disease itself originally became known in 1975 after researchers began studying the cause for a large cluster of juvenile rheumatoid arthritis cases in and around Lyme, Connecticut. The researchers soon discovered that the children were suffering from a multisystem inflammatory disease caused by a bite from a deer tick. That bite transmits in infection with a spirochete or spiral-shaped bacteria known as Borrelia burgdorferi.

The issues about chronic Lyme don't stop with the question of its existence. There's also controversy surrounding diagnosis and treatment. The symptoms of persistent Lyme disease are remarkably similar to CFIDS and FM - flu-like illness, fatigue, muscle and joint aches, and neurocognitive dysfunction - making it nearly impossible to distinguish between the illnesses.

A distinctive symptom of Lyme is the erythema migrans, a red bull's-eye-shaped rash that forms around the area of a tick bite. Although this rash is a sure indicator of Lyme bacteria, it doesn't appear in all tick bites [MK Notes: it occurs in perhaps 50% of bites]. Just as with CFIDS and FM, the diagnosis for Lyme disease is primarily clinical. Clinicians use a detailed medical history and careful examinations to rule out other disorders first, and then rely on lab tests to back up the diagnosis of Lyme disease.

The problem is that no single blood test provides definitive results. Two of the most commonly used tests are the enzyme-linked immunosorbent assay test (ELISA) and the Western Blot, both of which test the blood for evidence of antibodies created to fight Borrelia burgdorferi bacteria. Unfortunately, the results of both tests can be inaccurate, and analysis methods are not always the same from lab to lab. The ELISA test can show a false negative if performed too soon, and a positive ELISA should be confirmed with a Western Blot.

Lyme bacteria attach themselves to proteins, creating a disguise and defying detection, allowing the bacteria to enter the nervous system. Once the bacteria enter a cell, the immune system can't 'see' them and therefore doesn't know to create antibodies. So while a Western Blot may be more accurate, neither it nor the ELISA tests is useful once the body has ceased creating antibodies.

The US Department of Health and Human Services reported in 2003 that National Institutes of Health (NIH)-sponsored researchers began re-evaluating the existing tests and developing new, more reliable tests. But even after a positive diagnosis is made, many physicians disagree on adequate treatment duration. Suggestions run the gamut from 6 weeks to as long as 36 months. NIH-sponsored researchers are also studying how best to treat chronic Lyme disease.

One of the clinicians interested in chronic Lyme is Dr. Joseph Jemsek, founder of the Jemsek Clinic in Huntersville, North Carolina. Dr. Jemsek's practice treats thousands of HIV, CFIDS and chronic Lyme patients from across the country. In this interview, Dr. Jemsek offers some thoughts on the chronic Lyme puzzle.

Q. Do you think chronic Lyme exists?

Yes, I certainly do. As early as 1985 I diagnosed and treated an occasional patient with Lyme disease. Based on that experience, I am convinced that the Borrelia burgdorferi bacteria that cause Lyme disease can persist and cause chronic or recurrent symptoms. I also believe that chronic Lyme is the ringleader in many other illnesses, especially when symptoms of immune dysregulation exist.

Q. What are the problems with testing methods?

The biggest problem is a lack of standardised testing, and the tests we do use can be problematic, especially if they are performed either too early or too late into the illness. Too early into the illness antibodies aren't being created yet, while too late into the illness the immune system is no longer making antibodies. ELISA is not a true screening test because it's not proficient or sensitive enough to detect Borrelia burgdorferi. We use the Western blot testing method at the Jemsek Clinic because it looks for more unique and specific antigens.

Q. Can you explain a little more about what the ELISA and Western blot are screening for?

Both tests indirectly detect infection by detecting antibodies in the blood serum. The presence of an antibody doesn't always mean an active infection is present, but it does indicate exposure to the infectious agent. The absence of antibodies doesn't necessarily mean that there is no active infection. Our bodies make antibodies in response to foreign attackers like infection.

The first antibody created is usually immunoglobulin type M or IgM. It takes about four weeks to make IgM in quantities large enough to be measured. The antibodies typically stay in circulation for about six months and then the detectable levels decline. If the infection persists and the IgM levels remain detectable, the Lyme patient is chronically ill.

The second, more potent antibody is the IgG, which is made after IgM. IgG takes four to eight weeks to form, and peaks at about six weeks. Because the two antibodies are different, there are two separate tests to detect their presence. When testing patients, physicians should specifically order either the IgM or IgG ELISA or Western blot.

[MK Notes: The ELISA is widely regarded by the Lyme-literate community of physicians, researchers and patients to be the least effective way of testing for Lyme. The Western blot, when interpreted using the highly restictive CDC criteria, also returns a high rate of false negatives. For more information, see the Tests section of my Lyme: An excercise in nailing Jello® to the wall page.]

Q. What other illnesses do you see in chronic Lyme patients?

A disruptive, chaos-causing chronic infection like Lyme may be harboring other diseases. In addition to the obvious overlap with CFIDS and FM, we see many disease associated with chronic Lyme. We find celiac disease up to 10 percent of the time, but it's only supposed to be present in 1 percent of the population. We've seen thyroid nodules, thyroid disease, dysmenorrhea, atypical ALS, atypical MS, Crohn's disease, the list just goes on and on. There are also co-infections caused by microorganisms in the deer ticks that carry Lyme bacteria. Studies have shown that co-infections like ehrlichiosis, babesiosis, bartonella and Rocky Mountain spotted fever can be present with more severe symptoms and can be more difficult to treat than Borrelia.

Q. When should people diagnosed with CFIDS be tested for chronic Lyme?

When the NIH finally took Lyme disease seriously, they developed criteria and we had a symptom complex we could follow. At that time patients either had Lyme disease or they didn't. However, the three major symptom categories of chronic Lyme that overlap with CFIDS - cognitive dysfunction, central nervous system irritability and fatigue - make it hard to tell he difference between the two illnesses especially if there's no tick-associated rash. But if PWCs have any neurological symptoms that are otherwise unexplained, they should be tested for Lyme bacteria without question.

Q. Aside from lab tests, how can you screen a CFIDS patient for chronic Lyme?

Since there aren't any particular signs of chronic Lyme, we sit down and talk to the patient. During that conversation we might find that a PWC had a tic or tremor or shooting pain that he or she didn't tell anybody about before, indicating an unexplainable neurological symptom. At that point we'd test for Lyme bacteria. If the test is positive, the patient's response to antibiotics becomes critical. If we prescribe antibiotics and the patient has some sort of unexpected bizarre effect or intensification of symptoms, or if new symptoms develop, then we try different treatment regimens until we find one that works.

Q. Is long-term treatment of chronic Lyme really effective?

We know that treatment is controversial, but in targeting Borrelia burgdorferi we tend to have pretty good clinical success in the vast majority of patients. There's an art to treating a patient and to letting that patient's body detoxify, so we attempt to craft a rational antibody program that often requires different combinations and sequences of medications over a period of time. Because chronic Lyme is a complex multisystemic disease, issues of pain and sleep also have to be addressed in addition to the bacterial infection. Typically, after a few weeks of treatment, a patient's cognition is improved and a lot of the neurological symptoms will improve. Fatigue is probably the last symptom to turn around. Two studies have indicated that longer-term antibiotics make no difference in treating CFIDS patients. See It's my feeling that you can't base treatment of serious morbid illnesses like CFIDS or chronic Lyme on one or two studies.

[MK Notes: How does an experiment with a 45% drop out rate qualify as a "study" and get accepted for publication in a respected medical journal? By "proving" the researchers', CDC/NIH, and journal editors' pre-existing bias, of course! See Sticker and Harris comments on the study.]

Q. What happens when you get the patient that no one has been able to diagnose?

Other doctors will say, "We don't know what it is, but we know it's not chronic Lyme." And sometimes they're right. We don't always have an immediate answer, but because we see so many other illnesses related to Borrelia bacteria, we assume it is imbedded in the nervous system and playing a role in their illness at some level.

Q. There was a vaccine for Lyme disease at one time, but it was taken off the market. What happened?

The vaccine was called Lymerix, and it was a colossal disaster. Basically, the vaccine itself was making people sick by triggering treatment-resistant Lyme arthritis and other chronic arthritic disorders. Further study into the case found that about 30 percent of the population carries a gene that might develop this autoimmune arthritic disease if given the vaccine. The drug's makers created the vaccine without understanding the basic physiology of the organism in the tick versus the human in terms of changing its surface antigens. They didn't recognize that Borrelia could be an asymptomatic imbedded infection. I think it'll be a long time before we have another vaccine.

[MK Notes: Despite the spectacular failure of the vaccine, the CDC Western blot evaluation criteria specifically excludes the one band that is specific to Borreliae. Why? Because everyone who had the vaccine would be positive. It doesn't seem to matter to them or any of the doctors and labs who use the CDC criteria that no one is getting the vaccine, so if they are positive in this band, it means they were infected by the organism.]

Q. Why don't clinicians know more about chronic Lyme?

Many clinicians believe that chronic Lyme is easily cured and therefore don't take the disease seriously. It's mostly a matter of having the scientific evidence to prove to clinicians that chronic Lyme exists, and unfortunately we don't have that right now. We're at a primitive state as far as the clinical science is concerned. In the past year there's been an upturn in basic science reporting about chronic Lyme in both the United States and Europe, so interest in this illness is growing.

Q. Some people believe chronic Lyme and CFIDS are sexually transmitted. What do you tell your patients?

I know that Borrelia is a clever organism that's a member of the syphilis family. When people ask me, I have to tell them I don't know if these illnesses are sexually transmitted or not. There's no research to support either school of thought. I just advise people to take precautionary measures.

Q. Why is there such controversy over chronic Lyme?

That's not an easy question to answer. Doctors have to rely on the literature available to them, and unfortunately that literature is full of antiquated ideas. Therefore, some physicians tend to trivialise or deny its existence. The biggest disparity in opinion is between those in academic medicine and the doctors who actually treat chronic Lyme patients. The academicians believe that the most debilitating chronic Lyme, often referred to as neuroborreliosis, is hard to catch, over-diagnosed and easily cured in a few weeks. Treating physicians know that treatment protocol for chronic Lyme can last for months, and they very seldom refer to a patient as cured because relapse is always a possibility. HIV has a $2 billion research budget and millions of published articles, yet everything we know about it changes every few months. So how can we as clinicians be dogmatic about the existence and treatment of another serious chronic illness?

Q. Where does the burden fall for research into chronic Lyme diagnosis and treatment?

We have to get the scientists involved and excited about chronic Lyme. The responsibility for research doesn't fall into one particular category. Our situation with chronic Lyme and CFIDS is similar to the situation with HIV in the 1980s in terms of funding and research. There are thousands of diseases to learn about, and right now chronic Lyme and CFIDS just aren't at the top of the list. I think it'll be another 5 to 10 years before that happens. I do believe that if we learn more about chronic Lyme and the cause of CFIDS we're going to unlock the key to a lot of chronic illnesses.

Footnote:

Dr. Joseph Jemsek is the founder of the Jemsek Clinic. Prior to opening the Jemsek Clinic, he practiced infectious disease and internal medicine for 21 years at the Nalle Clinic in Charlotte. He is board certified in both internal medicine and infectious disease. His special interests include HIV/AIDS, persistent Lyme disease or chronic neuroborreliosis, chronic fatigue syndrome, fibromyalgia, chronic sinusitis and general internal medicine. Visit his website at www. jemsekclinic. com.

Sidebar: Did You Know?

* Lyme disease is named for Lyme, Connecticut, where a cluster of cases occurred in the early 1970s. Today it is acknowledged as the most common vector-borne disease in the United States.

* Lyme disease is transmitted by tiny deer ticks that are infected by a bacterium, or spirochete. A tick on the skin does not automatically mean you have an infection. Common sites for ticks are warm and moist areas, such as the genital area, behind the knees and on the neck.

* Research shows that an infected tick usually has to be attached to your skin for at least two days to transmit Lyme bacteria, but some clinicians believe it can be transmitted in as little as five hours.

* If you have a bull's eye rash around the area of a tick bite, you most likely have Lyme disease, which may or may not become chronic. However, the rash is absent in at least 25 - 35 percent of people who become infected. [MK Notes: And many people get rashes that are not the erythema migrans--the "classic" bull's eye rash.]

* Lyme disease can result in crushing fatigue and can affect the nervous system, causing severe headaches, pain or weakness in the limbs and poor muscle movement. These symptoms overlap with CFIDS, further complicating diagnosis of both illnesses.

Ms. Rice-Figueroa is Publication Director for the CFIDS Association of America.

Activism

Disability

Pain

Books

Drugs

Pets

Chemical Sensitivity

Finding Support/Doctors/Attorneys

Resources