Lyme Primer

There is no good, concise primer on Lyme disease, from my perspective. I haven’t written one.  My patients frequently arrive confused and bewildered.  Not surprising. There is a wealth of (difficult to follow and contradicting) information and views on the internet – and elsewhere. It is important to attempt to separate fact from opinion. I have a lot to tell patients. Too much.  At times I think I am doing a great job explaining something but I fail to see the glassy eyed moment at which the patient already suffering from Lyme brain is utterly lost.  A lot of dumbed down explanations are oversimplified and incorrect. Finding the middle ground can be a challenge. 

Here is an effort to outline some of the key points. 

Yes, Lyme is controversial, AND political.  Why? The answer is complex, hopefully covered in one or more of my blog posts.  The war about Lyme, the paradigm war, is not a cold war, it is a hot war. 

On the one hand, (standard view, shared by CDC, IDSA, medical specialists and 99.9% of practicing doctors in the US), Lyme is relatively straightforward.  Tick bite. Rash – bull’s eye. Various syndromes possible, such as Bell’s Palsy, swollen knee, meningitis, heart block (heart may stop) and a few others. Treatment is simple. Either doxycycline (amoxicillin if allergic) or IV Rocephin is given for a set number of days, i.e. 21 days, the germs are killed and the patient gets better. End of story. By the way – the typical blood test is highly accurate and dependable, if not in early disease, certainly in later forms of illness. And, chronic Lyme disease does not exist. 

On the other hand; Lyme disease is multifaceted and extremely complex.  Chronic disease with persistence o infection is the rule. Most patients do not recall a tick bite or a rash. Even when early disease is found, for example with a classic rash, 20% of patients may not get better with “standard” therapy. Coinfections are common. (the 99.9% group does not believe in coinfections). Lyme is caused by a type of microbe or microorganism called a bacterium. Bacteria come in various shapes, forms and function. Most bacteria are harmless or good, including those that live in our gut. The Lyme bacteria has an elongated spiral, cork-screw shape referred to as a spirochete. Most bacteria have round and rod shapes. Lyme is amongst an elite group of bacteria which are pathogenic, those that call human disease or illness. Lyme can sometimes make us incredibly sick and even kill. At other times, it behaves as an innocent parasite, living of the wealth of the land (or bodies).  Lyme (Borrelia burdorferi, scientifically – pop quiz on Friday) is a zoonosis. That means it normally resides in animals and may be transmitted to humans. Lovely.  The main home for these curled up bacteria is mice. They trek from mice (reservoir we call it), to human via an intermediary (called a vector), in this case, as you probably know, from tiny ticks which may be impossible to see.  

We think coinfections are the rule, not the exception. No. Coinfections are not another form of Lyme, as I oft hear. They are distinct pathogenic microbes which are carried via the same route, mouse – tick – us.  The most prominent coinfections are: Bartonella, another bacterium, rod shaped this time and Babesia, a more complex microbe, a protozoan, malaria-like which lives inside red blood cells. If this is too complicated, just remember that two other germs frequently accompany Lyme and may us sick, or very sick. 

Blood tests are very confusing.  Patients mistakenly think that (Lyme Western Blot) bands represent strains of various species of Lyme or coinfections, etc.. Hopefully a doctor can help you better understand test results.  Unfortunately, most physicians are woefully ignorant about laboratory testing. Lyme tests are clearly inaccurate and undependable.  There are many false negatives, not false positives from my perspectives.  Only a doctor can make sense of the results and “read the tea leaves” in many cases.  A positive test result may be very helpful.  A negative results does not mean you don't have the disease.  The 99.9% of doctors mentioned above disagree with the above statements.   Please don’t spend thousands of dollars without a doctor’s guidance or prescription. I recommend you let your doctor decide which tests should be ordered and sent to which laboratories.  I (can't speak for others) am always happy to discuss the options and pros and cons which is increasingly important as more tests come on line. 

If blood tests aren’t reliable, how the heck are you going to diagnose the illness? You might ask. 

OK. A lot of Lyme patients come in with a bunch of nonspecific and confusing symptoms. Absolutely. Here is what I say. First go to all the regular doctors. Have the regular tests done. See the regular specialists. Let me forewarn: If your doctor(s) says you need a shrink because its psychosomatic, that you have fibromyalgia or chronic fatigue syndrome, and you know your doctor(s) is wrong, you are probably right, something else is going on. In the words of the fictional Sherlock Holmes (roughly): when you have ruled out the impossible, then whatever remains, no matter how unlikely, must be the truth. OK. I never got it either. Anyway, perhaps you should consider Lyme. I think Lyme is common and therefore likely, they (the 99.9%) think otherwise. 

Lyme effects the brain and causes neuropsychiatric symptoms. This is important. Diagnoses such as dementia and mental illness may be wrong. Very wrong. 

You should certainly suspect Lyme if you spend time hiking, camping gardening, taking kids to parks, going to picnics and sitting on the grass, especially walking through tall grass or romping in piles of fall leaves, have dogs or other pets, AND, if you live in most places in North America (OK – probably all of us).  We are all at risk.  Some of my patients live in the city and deny any of the above risk factors. 

What are the symptoms of Lyme? Anything. Am I kidding – not much.  On the internet check lists of symptoms include anything you can think of.  Let me pare it down. 

Think Lyme, Babesia and Bartonella. Three germs. There is a triad of symptoms which seem to be remarkably linked to each one, with surprising consistency.

LYME: FATIGUE (which poor sleep etc.), PAIN (migratory, hurts here one day and somewhere else the next, usually joints like knees and hands), BRAIN DYSFUNCTION (changes in cognition, can’t remember names or words, getting lost or confused, not functional well, etc.

BABESIA: NIGHT SWEATS (may feel flulike with low grade fevers, others), AIR HUNGER (Strangely, feels like you can’t get enough air), MOOD CHANGES (Depressed, oddly cry for no apparent reason, others).

BARTONELLA: TENDON PAIN (Pain more likely in places like heels, shins, neck +/- headache), MOOD CHANGES (Irritability, anxiety, anger, rage, crazy) and RASHES (Not as common, several types, stretch marks especially). 

Three germs, each with 3 symptoms.  All overlap like a complicated Venn diagram.

Lyme and friends (co-pathogens) can cause any other, fill in the blank, symptom as well. But if some combination of the above symptoms is not present think of something else, other than tick-borne disease first. 

Yes. Lyme is the great imitator. It can look like and cause many other illnesses such as MS and rheumatoid arthritis. 

If I didn’t mention it, testing for coinfections is also very difficult.

Treatment. Easy according to the 99.9%. Hard for the rest of us. Expect multiple antibiotics and other agents given over a prolonged period, if you are suffering with chronic forms of the disease. There are different theories regarding the details of treatment. There is no correct approach. What works for one person may not work for someone else. 

Cure? Hard to say. Patients certainly get into remission. 

Why so hard to get rid of?  It’s complicated. Suffice it to say that experiments in mice, dogs and primates --- and in test tubes, show that Lyme bacteria persist, despite our best efforts to eradicate them. 

Many (most) patients seen in a Lyme clinic have previously seen many, many physicians who have frequently informed the patient: we don’t know what is wrong but we are absolutely, 100% certain it is not Lyme disease!  Keep in mind these doctors, especially ones at academic centers, the cream of the crop, the Harvards and Hopkins of the world comprise the heart of the 99.9% of doctors who are sure that everything written after the “On the one hand” paragraph above above believe everything else written here is absolute hogwash. 

On the flip side, some think everything is Lyme disease. It may be dangerously over-diagnosed.  I have seen cancer misdiagnosed as Lyme disease. As I said above. Get everything else checked out first. 

Why are the experts so certain and in my opinion frequently so wrong?  Learn the politics. Read my blog posts.  See “Under Our Skin.” Read “Cure Unknown.” You must understand why the entire medical field (so call mainstream medical community) soundly rejects the idea that Lyme is behind so much chronic disease. Don’t look any further until this makes some sense. 

I always say: Lyme is the most controversial disease in the history of medicine. Well, at least since they stopped poking holes through people’s skulls suffering with madness to let out the evil spirits.