The Lyme Patient’s Journey:
One day, seemingly out of nowhere, or maybe after a severe stress, or a surgery, a pregnancy, or an accident; maybe after a viral, or overwhelming bacterial, infection, you suddenly feel bad. In fact your general health suddenly and rapidly declines. Joint pain, fevers, muscle pains come and go. You go to doctor after doctor to no avail, so you research your symptoms on the internet. After extensive “research,” you come to the conclusion that you have Lyme. Maybe you remember you were bitten by a tick, maybe you don’t. Maybe you had a rash, maybe you didn’t. But the symptoms sure sound like Lyme. You go to your primary doctor. “Were you bitten by a tick? Did you have a rash, fever, etc. at the same time?” You’re not sure, so they blow it off as a diagnosis. GP’s are taught – you’re going to have an obvious bite, you’re going to get a rash and a fever. You take antibiotics for 15-30 days and that will work. No rash – no disease.
Back to the internet. More “research.” You read you don’t need to get a rash. You read that parents give it to their kids through birth, that it can be contracted from mosquito bites and every insect on the planet. You can get it from tears, semen, saliva. You kiss someone at the bar and that’s how you got the Lyme spirochete. The questions and uncertainty have now expanded from a person searching for answers to the Lyme conundrum. So you go back to your GP armed with this data. “Look, no rash, no Lyme. You just have something else. Chronic fatigue or fibromyalgia. Let’s give you something for the pain. We’ll send you to a rheumatologist, maybe counseling.”
So you take the measures into your own hands. You contact a Lyme support group or go back to the internet and are referred to a “Lyme literate doctor.” The doctor listens to you. For the first time someone is taking you seriously. The doctor acknowledges your symptoms may fit the diagnosis of Lyme disease. They run a Western Blot and an Igenix test. The Igenix test shows so many “bands.” More testing is done. It looks like you may have Lyme, Babesia, or one of the many other co-infections. So now you think “Hooray!” We figured this out! It was Lyme all along. This is a good thing. I knew it. You can’t treat anything successfully until you understand its cause. We’re on our way.
You begin care with your Lyme literate doctor. The Lyme doctor is treating you with antibiotics for the Lyme bacteria spirochete (and with other modalities for the co-infections which we will address later in this article). Maybe you’re one of the patients that go on the antibiotic pulsing protocols and have a miraculous recovery. We know many of these patients. But maybe you’re a patient who seems to “require” antibiotic therapy for 2, 3, 4, 5, or 6 years. And you don’t seem to be getting better and indeed actually are in fact getting worse. Your doctor orders more tests. Co-infections, metals, food allergies, and more. More medicines, tons of supplements and botanicals, herbs, chelations, pushes, hydrogen peroxide treatments and more. Some may make you feel better for a little while but overall you have the sense you’re not getting better. You’re losing hope and there doesn’t seem to be an organized game plan, a prognosis to figure out what’s gone wrong. Just more tests and more treatment with no end in sight. For many, if not most, the story ends here – with a lifetime of allopathic and alternative pain management attempts to “cure” the disease or simply manage your symptoms as you continue to suffer with your condition with no end in sight. And the reason for this is that the Lyme chronic pain patient at this point is not being treated for the cause of their ongoing symptoms and disease. But how can that be?
Let’s Look at the Testing and “Diagnostic” Procedures:
America’s Infectious Disease Experts (Center for Disease Control) says you have a rash, you get treated with antibiotics and in 30 days you should be fine. (So they are referring to the acute stage of Lyme. You had the rash and are in the first 30 days of infection.) During this time the doctor should run antibody testing (called an ELISA test) establishing whether you have developed antibodies to the Lyme bacteria. If the answer is yes then the next step is to run a Western Blot test that will further verify the infection. The CDC says that if your ELISA test is negative for having the antibodies to the Lyme bacteria you shouldn’t bother with the Western Blot test. If you have the rash, the symptoms and have two positive tests, you, as a doctor, should treat for Lyme. Remember – even if you are months or years out from your symptoms this very strict and scientifically sound approach is for the acute (within 30 days) infection.
Juxtaposed the Lyme literate doctor, who rarely sees a Lyme patient within the first 30- 90 days, will say no matter what the ELISA test says, you should get a Western Blot test. And we have our own criteria for interpreting these tests which is, let’s say, not as stringent as the CDC’s criteria; and by the way we use Igenix anyway. By all standards the Igenix testing (and subsequent co-infection testing) is understood to not be very accurate and subject to a wide variety of interpretations. This diagnostic rift is only the beginning of the Lyme patients’ barriers to improving their condition. In the next article we’ll discuss the four major problems this rift causes for the Lyme patient as well as discussing the treatment conundrum.