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Tuesday, December 16, 2008

Lyme disease for dummies: part one

A lot of the information presented about Lyme disease is full of doctor- speak and goes over the head of many patients. When I find myself telling patients about the disease I frequently find ways of making the concepts more easily understood by a lay person. Not only is the jargon confusing, but many or most of the patients already have brain fog; so its not surprising that they leave the office having no idea what I just said. I suspect that many folks are too polite to tell me that I lost them. They just leave the office affably with prescriptions in hand- hoping I know what I am talking about. When I use the word "dummy" in the title, patients reading this should take no offense.

Lyme disease occurs when a bacteria is delivered into your skin by a tiny tick. The ticks are like scavengers and can also carry a host of other germs in addition to Lyme.
Early Lyme infection associated with a rash is usually easy to treat. Most patients don't recall a tick bite or a rash. Most of the patients I see have chronic symptoms which are thought to be due to persistent Lyme infection, frequently, along with other chronic germs.

Lyme, a spirochete named Borrelia burdorferi (Bb) for short, is a very smart germ.
Humans that look like us have been around for more than 100,000 years. Our immune systems are very smart as well, but they haven't evolved much recently. In fact, we have given our immune systems reasons not to evolve. Hundreds of years ago the major cause of death for most humans was infectious disease. Small Pox and the Plague killed many millions. This would drive the process of natural selection to improve the human immune system. But in recent times, with advent of vaccines and antibiotics, there isn't much to motivate our immune systems to improve. Bacteria and other microorganisms, on the other hand can evolve very quickly. They are smaller, simpler and divide very quickly. The biological blueprint DNA, can readily change to adapt to a hostile environment. Natural selection occurs when random gene mutations make the organism more adaptive. Bacteria, like Lyme, are in a continual process of improving their odds of defeating our immune system as biological processes are refined via DNA mutations. The bacteria develop ways to optimize their chances of survival in an otherwise hostile environment.

Germ versus human. Thus far, it has been a race that we cannot yet win.

So their are numerous tricks that these germs have developed to thwart out bodies defenses against them. What about antibiotics. Don't these wonder drugs of the modern era kill all bacteria? Unfortunately, the answer is no. These germs are so smart that they can "out think" our immune systems and still survive in our bodies despite huge doses of antibiotics. (There are some doctors who disagree with this perspective, but I and the patients I treat will attest to its accuracy).

This doesn't mean all is lost. Our bodies are used to many chronic infections which we carry as relatively harmless parasites. There are effective treatments which can control Lyme and its symptoms and frequently cause a "clinical" remission in which all the symptoms go away. A clinical remission is different than a cure. Some bacteria may remain in the body, but hopefully they are no longer troubling you.

Lyme can disseminate throughout your body and cause a huge array of varying symptoms.
This is perhaps why some have called it the great imitator.

Many doctors do not believe in "chronic Lyme disease" because the symptoms seem so vague and non specific. They might argue that it could be anything. While it is true that Lyme disease can be associated with a long laundry list of symptoms, it is my experience that the vast majority of patients have a constellation- a grouping of similar symptoms. It seems that 90% of patients complain of: fatigue, pain of joints muscles or tendons, numbness and tingling- or pins and needles and brain dysfunction such as trouble recalling words or a sense of "brain fog." In my experience, the symptoms of many of the patients I see are very similar. There may be many other symptoms in individual patients that can be built onto the the core symptoms. But generally, if chronic Lyme is the diagnosis, these core symptoms will also be present. If a non typical symptom is the primary complaint, then I look for something else before considering the diagnosis of Lyme disease.

Many claim that the physical examination of Lyme patients is usually negative. I disagree. Almost 100% of Lyme patients have subtle neurological changes which can be discovered with a careful examination.

Laboratory testing is a very complex topic. The conventional test for Lyme is believed by many- myself included, to be very inadequate. The laboratory evaluation of Lyme patients throws out a wide net. It looks for changes in the immune system and other metabolic markers. It checks for other tick borne co-infections. Ultimately a better Lyme test may need to be done by a special lab with out of pocket cost to the patient.

Lyme disease is complex; this is perhaps an understatement. Disease occurs when the patient is sick (not as obvious as you might think). Illness is associated with an imbalance in the factors which ordinarily support good health and well being. Lyme-Bb is a germ. Simply being infected with the germ does not mean you have Lyme disease. Chronic Lyme infection may be carried as a passive parasite. There are many factors which can tip the balance between health and illness. These include genetic factors and environmental factors. Some infected patients will never develop illness and others will only develop illness after a prolonged period of time. Some patients will develop only mild, barely noticeable symptoms, while others will develop a severe, life threatening and/or disabling disease. These thing are not predictable given the current state of the art. There is never any reason to test persons who have no symptoms.

These disease state itself is caused by a multitude of complex factors. The infection itself is one issue. The immune system's response may be another. Lyme infection is a powerful stimulator of immunological responses. These responses can be associated with inflammation that causes tissue damage; and, the immune system can be over-stimulated to produce autoimmunity. Autoimmunity occurs when the body's immune system mistakes its own tissues for foreign undesirable structures such as those associated with germs. This sort of reaction can make Lyme disease much worse and cause or exacerbate a whole genre of disorders called autoimmune diseases.
Many have also postulated that Lyme symptoms also result from toxins that are released in the struggle between the immune responses and germ.

Patients famously get worse when treatment is started. This is called the Herxheimer reaction. Is is thought that the initial killing of the germs causes an exaggerated immune response and that the inflammation associated with this response makes you feel worse for a period of time- after which you start feeling better!

The treatment of Lyme disease can be a long and difficult process. There is no therapy that works for all patients. Frequently responses are judged based on trial and error. Chronic Lyme disease is a new and controversial entity. For complicated political reasons, many physicians today refute that it exists at all.
The understanding about the mechanisms of the disease are in a state of flux and continual revision. Patience, persistence and creativity are essential ingredients in the successful treatment of Lyme and tick borne diseases.


Lyme report: Montgomery County, MD said...

I hope this addresses some key points and questions which frequently come up:

Aren't antibiotics bad for you?

Why doesn't it go away with 10 days of antibiotics like my Strep throat?

Why do most doctors not believe in Lyme disease?

Can you get rid of it or do you have it for life?

How long do I have to take antibiotics for?

Why can't you diagnose it with a simple blood test?

Why can't you tell it is gone with a blood test?

clem said...

Thank you for this post. I help out with a Lyme Support group, and these are some of the most common questions we get asked.

Your blog is most informative, and I appreciate it being out here to learn from.

Lu Lu's Fluffy Ruffles said...

I just came across your blog and have found this particular post very helpful.
I have tried to do research on lymes but have found it very difficult to fully understand the complexity.
your post explained it nicely.

I have been trying to treat my lymes for almost two years and im still sick.
my doctor wants to put me on plaqvenil withmy antibiotic but im very nearvous about the drug and if it willonly make things worse. its sohard toknow what to do and im very scared.
thank you for your blog.

Ni said...

Proofing of Lyme Disease
A. I took the tiny flesh colored tick in to the doctor.
B. I took my bulls eye rash with me to the doctor.
C. I took a fever with me to the doctor.
I was told that there were no Lyme ticks in our state.
The tick was thrown in the trash.
I am a nurse, I should have known better, however I could only encourage the doctor to treat me with fourteen days of Tetracyline.
(I almost lost that word, just as I have lost many words that I had used in my work for over 25 years)
I actually became the Porky Pig of language in order to cover up my word losses...for those of you who don't know Porky...he was the cartoon character who stuttered and finally chose another word to replace the one he lost.)
Yes, we Lymers are cool cats that can cover our Lyme symptoms for many years and become the poster child for buying into (word loss) magical thinking while praying for the magic that can control herx.
I have watched my symptoms morphing into other symptoms and back again.
Lyme does not seem consistant, still a diseased person is still a diseased person even if it is not called must be treated. So much for the HMO route to medical care. It allowed people to suffer and die without ever knowing that they were not just mental.
Ni(The Ancient One)

Unknown said...

Maybe you can help me with something. I have had massive and often joint swelling for years. I do have hyperuricemea(gout) and have since been treated. Some of my problems went away after allopurinol treatment, but not all. I always had high crp, sed rate, and sometimes RA Fac. I got bitten by ticks two summers ago while on plaquenil. This is what the rheumatologist began to treat me with. I took several months of doxy and somwhat got better. Believe it or not, the next Spring, i again got a seed tick on my calf. This time, I got a bullseye. Im getting close to a year treatment. Its almost Spring again. Ive used some 6 abx and just started Flagyl(lyme, and mycoplasma pneumonia positive). I am still slowly fading with no relief. My wrists, hands, and ankles are swollen. I just killed some Mepron. If I have no hope in sterilization, should I just start plaquenil in hopes of kicking the chills and fever of immune response? I took it for three years. I believe Ive sustained so many tick bites since childhood, that I had Lyme all along. The rheuma never mentioned Igenex, and we trained rabbit dogs many summer nights here in Miss. When I was young. Is immune modulation and a life indoors realistically the best i can hope for? I still have plaquenil and i know the relief it would give. Its Jan 1, and Ive been sick since April. ive had several neck operations and my body is battered and beaten. im only 38. Is it time to settle?