Lyme Disease

Deer Tick I just got back from a whirlwind trip to see a Lyme Disease specialist about 3 hours from my home. About half-way into his assessment of my condition during a physical he was sold that I had Lyme disease. He prodded me all over in numerous spots and poked me in my bottom rib on the right side near my back. It did not tickle. "Is that tender?", he asked. The truth is that the little poke was very painful. That was the dead giveaway that I was not a nut for insisting to my PCP that I was not suffering from something else over the past several months after my other clue that I had Lyme or some variant from the get-go – the Erythema Migrans (EM) rash. Now my routine cookie-cutter blood tests came back negative twice. That was enough for him to say that I did not have Lyme and that therefore my fatigue was not a symptom of it. So a good friend of mine asked my wife and I after our visit with the specialist if we "(W)ore our 'I told you so T-shirts'" yet. Not yet, but someday perhaps.

The issue with Lyme is that it is not a "disease" with a singular kind of bacteria or virus. It is actually a result of several different possible kinds of bacteria that enter the system and wreak havoc. Some of these give off different symptoms than others. This is why it is not only difficult to get a diagnosis that suggests a high probability of this or that illness, but that in clinical assessment the disease mimics the symptoms of other illnesses that are for the most part benign – like strep throat or mono. So this also complicates blood tests since your typical test looks for specific kinds of antibodies that the bodies produces or specific bacteria or viruses. Lyme tests must therefore be more rigorous and your standard HMO bound practice will not perform them. This seems to make sense given the limits that HMO's impose on the kinds of tests that practices are allowed to order on a routine basis. But what is troubling here is the logic of it all. Here's is what I experienced:

EM Rash I went in with a very clear EM rash – textbook case. Look it up on line and this is what I had stretching from the base of my right wrist halfway up my elbow. The center of the bullzeye was very tender and was like a little pea just below the surface of the skin. Now deer ticks and Lyme are not common in my area (ironic since the mountains of PA are notoriously prime deer hunting territory – a Mecca for deer hunters; we get the first day of deer hunting as a vacation day in the public school system). So the probability of contracting Lyme is low. Understandable based on the statistics of reported cases. But this also means that primary care physicians who have been working in areas of low probability for Lyme positive cases are also very low. So it is less likely that they have facility to work with the symptoms of it in a clinical setting.

So I took three blood tests for Lyme among other things. All were negative. My doc said that he does not treat the test. Good to know. However, he was also convinced that I did not have Lyme based on the various negative tests that were produced. This in spite of the poor rate of effectiveness of blood tests to detect bacteria that cause Lyme symptoms. He also insisted that fatigue that I had been experiencing since the EM rash appearance were not related to Lyme but perhaps something else like chronic fatigue. To his knowledge, fatigue is not a symptom. This was news to me since every publication of any reputability and even those that I would consider spurious have fatigue as a classic symptom.

Now I like my doc, but something is wrong here. I am coming in with classic symptoms and we know that standard blood tests are very unreliable and even the tests that are more reliable cannot guarantee a positive result. This is something that is clinically diagnosed and then supported with serology and not the other way around. This means that if the doc does not have the experience with the symptomatology to give an accurate clinical diagnosis, you are not going to get the treatment you need. So here is a good rule – just like with any other trained professional in a highly skilled field like medicine, your doctor most likely is not versed in all kinds of illness and the treatments or diagnoses. This does not mean that they are bad doctors, but that they are human. If you are not satisfied within reason, then try to find a specialist to assess your symptomatology for the specific illness you might think you have. My doctor was looking only for arthritic symptoms and nothing else. Since I did not have these symptoms and since my serology was negative, his conclusion was not Lyme. He also mentioned several times that I did not see the tick or did not produce it which is also something that most folks cannot perform.

What is abundantly clear is that we cannot rely on serology to diagnose, but only use to confirm a clinical diagnosis of LD. The first dead giveaway is the EM which I had. Secondary diagnoses go on the patient's level of comfort and the results of a physical examination which was not performed. Articles from the JAMA seem to confirm the unreliability of serology in LD diagnoses. That my serology and an assumed set of clinical symptoms were used seems to indicate a lack of rigorousness to rule out LD given the other symptoms I presented.

Several minutes into my physical examination along with the other clinical evidence I presented, the specialist was quite sure that I was Lyme positive. Moreover, he is also quite convinced that due to its immuno-suppressive tendencies, the LD reactivated the virus that caused mononucleosis when I was about 8 years old. This explains my enlarged liver and spleen.

So at this point, about 15 vials of blood were taken and sent to labs that do more effective and rigorous tests to look for several of the known bacterias that cause Lyme symptomatology. One lab is in Arizona and the other in California. Why do so few labs run these kinds of tests? Apparently the grant and research money is not sufficient enough to provide a researcher with a living wage. To wit, there appears to be a relative paucity of research on the topic. Even my pastor noted that it has been twenty years or so, and they don't seem to have made any progress!

If Lyme Disease has this much variability in what causes the symptoms there are a few things that are puzzling:

It could be that many people are Lyme positive even though their serology is negative. This means that recurring illness from flu symptoms to arthritis could be related to various kinds of bacteria that are causing the problems that are simply not accounted for accurately in common tests. Since insurance comes down hard on unnecessary tests for just about anything, and since the average physician does not get the training in many of the things that cause Lyme symptomatology, these countless patients go untreated and are chronically ill without theirs or anyone else's knowledge or care.
Physicians are not getting clinical training in how to deal with Lyme Disease and are falsely attributing it to other illnesses that are non-existent and therefore proper care is not being given. The irony is that this may even cost more than if those tests for which insurance will not pay were performed in the first place.
With the combination of insurance agencies limiting tests that may be unnecessary and costly and physicians giving inaccurate diagnoses, proper care is difficult at best and likely impossible. To wit, the physician I visited yesterday is not part of an HMO and performs the tests he things are necessary. In his 43 years of clinical experience he is quite sure of his initial diagnosis and the serology is there to support that diagnosis. But as the evidence shows, even then it might come back negative. Therefore, err on the side of caution and being a proper and aggressive round of antibiotics.

Obviously there is more to learn here. But the rationality behind this whole process has been strange since the initial rigor of analysis was clearly lacking.

I have a feeling that I may be creating those "I Told You So" t-shirts from CafePress sooner rather than later!