Last week I suggested if you’ve been suffering longstanding but otherwise unexplained symptoms, a long-ago tick bite might be an overlooked possibility and you could now be dealing with chronic Lyme disease. I added that your recovery may well be delayed by some totally unnecessary and immature bickering among physicians about the correct name for this condition.
For simplicity’s sake, what I call chronic Lyme in this Health Tip means that you’re feeling the widespread effects of the bacterium Borrelia burgdorferi, inserted into you during a tick bite. This germ may have spread throughout your body because your immune system was unable to inactivate it.
The deer tick, a filthy little beast, may also have deposited (a euphemism–actually it upchucks into your blood) several other co-infections that you’ve likely never heard of. When a person with Lyme fails to improve, it can indicate that she also has Babesia, Bartonella, Ehrlichia, or Anaplasma. Unfortunately, more and more tick-borne illnesses are being discovered worldwide.
Last week’s Health Tip contains links to a couple Lyme questionnaires that, when completed, could give you an idea if this diagnosis is a possibility. I suggested that if this were the case to ask your physician to order the Lyme Western Blot test for you.
How Western Blot test results are expressed
Your test results will come back in one of three categories:
Positive Odd as this may sound, you’re in luck. With further luck, your doctor has the time to look up the correct treatment regimen or refer you to a physician who knows about treatment, called a Lyme-literate MD (LLMD). Or you can find one on your own (see below).
Indeterminate You’re not positive, but you’re not negative either. Unfortunately, most physicians will interpret this as negative, not prescribe anything, and you’ll likely get worse.
Negative If you scored high on the self-tests for Lyme I linked to last week but have a negative test result, this is actually not good either. At least 20% of patients who later are found to have chronic Lyme started out with completely negative tests and were deprived of treatment, often for years.
What’s your next step?
Finding a Lyme-literate physician
If you’re indeterminate or negative but still feel Lyme is a possibility, you can google or use an LLMD referral service. Go to ILADS.org, register, and use their Provider Search to find a Lyme-literate physician near you. Like most referral services, there’s no quality assurance, although the four of us LLMDs listed in the Chicago area have been treating Lyme for years. I personally am shown as having less than one year of experience, apparently a punishment from ILADS for inadvertently forgetting to pay last year’s membership dues.
ILADS membership is certainly not a prerequisite for good Lyme treatment. Most integrative physicians are very open to treating Lyme, even if they’re not listed in the register. I must say here that I’m pretty shocked at the professional fees charged by some LLMDs, with the added jolt of many not accepting insurance. This to me adds insult to injury considering the small fortune many people pay for health insurance. (WholeHealth Chicago is in network with the Blue Cross PPO and will provide documentation for you to submit to out-of-network insurance companies).
When you visit an LLMD for the first time, they’ll really appreciate (at least I do) your bringing with you all available medical records, especially your lab tests. Otherwise, you may need some tests to check on your basic health, such as blood count, that your family doctor has already done.
Unless your Western Blot is clearly positive, you’ll most likely undergo additional testing before you start any treatments. There are three reasons for this:
–There are better tests for chronic Lyme than the Western Blot test you initially received.
–There are an assortment of medical conditions that are clinically indistinguishable from chronic Lyme and your LLMD wants to rule these out.
–Your LLMD wants to evaluate your overall health and well-being to get an idea of the best choice of treatment.
The better tests for Lyme
By far the most LLMD-recommended test to confirm chronic Lyme is made by IGeneX Labs in California. Theirs uses an elaboration of the Western Blot technique and is quite good. IGeneX also developed a newer test, called Immunoblot IgM and IgG, which claims a 98% accuracy.
Unfortunately, IGeneX does not bill insurance and you’ll need to pay out of pocket (most LLMDs ask you to pay the lab directly). Yes, you’ll gasp at the price list, but don’t panic. We generally order a la carte rather than expensive bundles of tests. The “Lyme Basic” for $250 and/or “Lyme Immunoblot” for $450.
If you’re located nowhere near an LLMD, you can order a blood drawing kit directly from IGeneX, have your doctor draw the blood, select the tests I suggest above, and mail your specimen back to them. The results will be sent to your doctor.
Alternatively, a LLMD may send your blood to Armin Labs in Germany for their EliSpot Lyme test. This is about the same price as IGeneX, but has the distinct advantage of being able to track improvement. In other words, with the Armin test, as you get better your numbers get better.
It’s worth noting that most labs can now test a tick that has bitten you to see if it’s carrying something infective. The WholeHealth Chicago lab is actually a division of Northwestern Hospital and this test, according to the lab manager, is covered by insurance.
Clinical conditions that mimic Lyme
Most LLMDs will run a battery of tests based on your answers to a Lyme questionnaire. Some of these tests may include the following. It looks like quite a list, but these tests are generally covered by health insurance.
–Chronic viral infections: Epstein-Barr, Mycoplasma, HHV-6, Intestinal parasites
–Chronic inflammatory response syndrome (often from mold toxicity)
–Chronic exposure to toxic metals (arsenic, mercury, etc.)
—Mast cell activation syndrome
–Adrenal and thyroid dysfunction
How is chronic Lyme treated?
Remember, we’re dealing with disseminated Lyme disease, in which the Borrelia (or a co-infection) has been inside you for years. In this way, Lyme is similar to tuberculosis (TB), which can take decades to manifest. A patient with TB in her lungs may be on several antibiotics simultaneously for months or even years because the infection is deeply seated.
It’s the same with chronic Lyme. We’re not talking a ten-day course of penicillin for strep throat or five days of Macrobid for a bladder infection. We’re talking about treating a longstanding infection involving multiple organ systems in your body.
Most LLMDs will place you on three antibiotics for a few weeks before making adjustments (adding new, subtracting previous), depending on your progress or lack thereof.
You’ll also be given nutritional advice and an assortment of supplements and herbs to strengthen your immune system and detoxify your body from the dead-and-dying Borrelia, which release toxins into your system and can cause a limited-time worsening of symptoms. This is called a Herxheimer Reaction, named after the doctor who first witnessed it when treating syphilis. As a side note, Karl Herxheimer was a Jewish dermatologist, helped found the University of Frankfurt in 1914, and then at 81 was deported and died in one of the Nazi concentration camps.
Can Lyme be treated naturally with herbs?
The answer is a qualified yes, depending on the severity of your illness and the skill of your herbalist. I would not recommend herbal therapy for acute Lyme disease as it’s so easy to completely cure with a relatively innocuous antibiotic (doxycycline).
However, if you’re reluctant to start a bevy of antibiotics and you’re willing to be a patient patient, herbs and supplements are a reasonable first choice, especially when combined with other alternatives like ozone therapy and traditional Chinese medicine.
What you can hope for
Just about everyone who is correctly diagnosed and receives treatment eventually gets better from Lyme disease. Dying from Lyme is a genuine rarity. However, since some doctors aren’t looking for it and/or don’t believe it exists, we don’t know how many cases of Alzheimer’s or fatal heart arrhythmias were actually Lyme disease.
When completely untreated, Lyme’s chronic symptoms can slowly worsen to the point of disability. With appropriate treatment, most people feel better and some are completely cured, though still others are prone to persistent symptoms.
Relapses occur and can be singularly annoying, but are no cause for panic. One former patient could tell when her Lyme was relapsing because she’d have double vision (her initial Lyme symptom). She would then return to taking antibiotics for a couple of months and be fine for a few years.
My fear is that with climate change expanding the range of several tick species, we’re going to see more and more illnesses that reflect Mother Nature’s anguish.
David Edelberg, MD
12 thoughts on “Chronic Lyme Disease: Best Testing, Best Treatment”
My son is 27 years old and has a very difficult time walking. He was a PGA Professional and had to give up his lively hood, due to the fact he could not walk or stand for to long. It has been 4 years and has seen so many specialist. He has seen 4 neurologist and they all can’t come up with a diagnosis, but says its genetic and has no cure. We keep asking if this could be lyme all say no. Like I said, his feet have a sense of walking on ice and he deals with 3 migraines a week. We need help!
Hi Nancy –
I recommend calling and scheduling a telemedicine visit. This can be done by calling 773-459-5223.
I sincerely hope we can help get you and your son some answers.
Which herbalists do you recommend in the western suburbs?
Hi Amy – we don’t have a specific recommendation for an herbalist in the western suburbs, but our naturopath Dr. Caley Scott has great experience in helping patients with herbal remedies. Here’s her bio for your reference, and she’d be very worthwhile the drive into the city for occasional appointments.
Hope this helps!
I would suggest 4-6 weeks but also get a blood test for Lyme at the end of the antibiotics. A Western Blot test would be enough
I was treated with three weeks of doxy following a tick bite, but symptoms persisted. I’m now on Biocidin but I’m considering doing more doxy as most people I know have only gotten better after two doses. I saw the Lyme website you mentioned recommends 4-6 weeks of doxy. If I do more do I do 3 weeks again or 4-6 weeks?
Can I start Corvalen (Douglas Labs doesn’t sell to unregistered patients). And can K-Pax be obtained through the apothecary? Do I need specific tests to start these? Based on my history, and worsening tiredness, I think this might help. I’m willing to try almost anything.
I wrote an Health Tip about Bitten
Here’s the link
What about the origin of Lyme disease as described in the book Bitten?
My Infectious disease doctor recommending I have a Lumbar Puncture to test for Lyme, etc.
What is your opinion? I was diagnosed with Lyme 6 years ago…western blot by Igenis
Hi William –
If you were already diagnosed, what’s the purpose of the lumbar puncture?
Maybe he’s like me, and is now experiencing new scary symptoms indicating it’s reached the CNS. I was only allowed 24 days of doxy 2 yrs ago and it wasn’t enough. Although it helped. I may just take bird doxy for second round.