[CO-CURE] MED: Does chronic Lyme disease play a role in CFIDS?

[Guest guest]

Since my recent interest in Lyme/CFS, I thought I would post this

for those that do not check/read the co-cure list.

I tried everything to make the formatting look right, sorry best I

could do. Its on co-cure, as well as another Lyme message today.

CFIDS CHRONICLE, SPRING 2005.

The cover of the Spring issue has a tick in close-up on the cover.

It is

accompanied by the headings:

CFIDS CHRONICLE A quarterly publication of the CFIDS Association of

America, Spring 2005

Does chronic Lyme disease play a role in CFIDS?

CFIDS and chronic Lyme disease are overlapping conditions that

present

baffling questions for clinicians, researchers and patients.

Currently,

there's no research confirming that chronic Lyme and CFIDS are

somehow

connected, and clinicians often have trouble diagnosing which

illness is

present. (see page 8 for the story)

Proceeding to page 8:

Chronicle Q & A The Chronic Lyme Disease Controversy

by Angenette Rice-Figueroa, Publications Director

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. 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. ph

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? A. 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? A. 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 he 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? A. 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.

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

A. 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? A. 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? A. 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. It's my feeling that

you

can't base treatment of serious morbid illnesses like CFIDS or

chronic

Lyme on one or two studies.

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

diagnose? A. 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? A. 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.

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

(interview ends)

Footnote:

Dr. ph 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.

* 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.

(ends)

© CFIDS Chronicle, Spring 2005, pp 8 - 11.