We Went to the Doctor and the Doctor Said…

… Nothing about feeding my wife shortening bread.

Ma'ikwe traveled to the Chicago suburbs this past week for a Wed morning initial visit with a Lyme literate doctor (whom I'll call Doctor Annette). "Lyme literate" is an appellation used by doctors who have made it an emphasis of their practice to study this particular syndrome and to work with patients who suffer from complications associated with having been infected by the bacterial spirochetes that carry the disease. As it turns out, it's complicated—not to mention controversial.

Size Matters
Before taking you on a tour of the Lyme Disease House of Horrors, I want to offer a basic primer on the following pantheon of human health hazards:

o Viruses are the smallest players. They don't have cells and are incapable of reproducing without a host. They are common and widespread. By far the most prevalent is the common cold. Other examples include flu, herpes, chicken pox, mumps, and shingles. While most viral infections are self limiting (such as a cold), others are not (such as AIDS). Viruses are often treated with vaccines, and cannot be treated with antibiotics.

o Bacteria are one to two orders of magnitude larger and can reproduce on their own (through asexual fission). Though larger than viruses, bacteria still lack a nucleus. They are styled prokaryotes, and exist as single-cell organisms. Antibiotics are typically used to kill bacteria by disrupting the integrity of the cell walls. Examples of bacterial infection include E coli, salmonella, staphylococcus, meningitis, and gonorrhea.

o Parasites are larger still and have a true nucleus. Though they are mostly multi-celled, they exist as single-cell organisms as well. Parasites are styled eukaryotes, and derive nutrients from a living host. Examples of parasite-caused human illnesses include amoebic dysentery, malaria, scabies, and pinworms. Treatment tends to focus on killing eggs, killing hatched parasites, and regenerating damaged tissue. Antibiotics are not affective approach with eukaryotes because what kills them will also attack healthy tissue.

o Fungi are also large. They are plant-like multi-celled living things that operate without chlorophyll. If they take nutrients from a living host then they are considered parasitic. However, fungi also exist as symbionts (where there presence is mutually beneficial with a living host) and as saprobes (where they derive nutrients from the decaying matter of a dead host). Examples of parasitic fungi that infect humans include athlete's foot, ringworm, and thrush. Treatments include antiseptics and fungicides.

• • •

While most doctors take the position that there is no such thing as chronic Lyme (outbreaks of Lyme symptoms that reoccur without re-infection), there is a minority view that the spirochetes are extremely clever, hard to expunge, and the cause of all kinds of mischief. According to Doctor Annette the Lyme organism can exist in three phases:

—Spirochete Phase
This is the active bacterial version that all doctors recognize as a health hazard. People typically get infected as the result of back wash from a tick bite. While the classic symptoms include a bullseye rash around the bite, achy joints, fatigue, and headaches, an infected person may not experience any of these. There are definitive tests for the presence of spirochetes in the blood, and the standard treatment is an antibiotic to kill the spirochetes. (In Ma'ikwe's case she took a strong course of doxycycline 18 months ago when she first tested positive for spirochetes.) In addition, the spirochetes would normally be attacked by a person's immune system and are also adversely affected by heat (one of the more interesting treatment protocols is regular use of an infrared sauna, that apparently drives the little boogers crazy).

—Cyst Phase
As a defense strategy, the spirochetes can go dormant by encysting in response to attack. They can apparently stay dormant for years. Ma'ikwe suspects, for example, that her original infection happened in 1997, when she was diagnosed with and treated for Rocky Mountain Spotted Fever. In this phase there is currently no known test to discover their presence. Doctor Annette explained it using the metaphor of your body as a house. If the spirochetes live in the halls and the cysts in the rooms, a blood test will only tell you if there is anything in the halls.

The understanding is that the disease will move out of the cyst phase and back into the spirochete phase opportunistically in response to stress, or any time when you immune system has been compromised. This could include emotional distress, physical trauma, attack by another disease, etc.

While Ma'ikwe wasn't oriented toward looking at Lyme as part of her health record until she got a positive blood test for it in 2010, when she looks backwards, she now thinks that the disease reappeared in 2005, when she gave birth to her daughter, Ananda, and had a difficult labor. She never regained the same level of wellness that she enjoyed prior to her daughter's birth, and the diagnosis of chronic Lyme explains a lot of things.

In an effort to attack the cyst phase, Ma'ikwe takes regular doses of an anti-candida medicine that includes grapefruit seed extract, oregano oil, and acidophilus (yogurt culture, a probiotic).

—Cell-wall Deficient Phase
In addition to the first two phases, there is another, more exotic phase where the disease is active yet markedly different than in the spirochete form. While bacteria normally have cell walls, these ingenious boogers have apparently figured out how to survive for a time without a cell wall, thereby negating the effectiveness of antibiotics trying to hunt them down.

I know this sounds like something from the fringe science of the '60s television program Outer Limits, but evidence for this bizarre possibility was first discovered by scientists in 1935 when they found that some organisms that normally have cell walls could replicate without cell walls and then have the progeny revert to the original morphology (that is, with cell walls). Weird, eh?

While this three-phase defense strategy is impressive all by itself, the spirochetes have gone beyond that to develop additional techniques to bolster their survival. For one thing, they can clump in a ball. While the outer layer is susceptible to antibiotics, the inner layer is protected. Thus, a normal antibiotic course may not kill off all the spirochetes unless it's sustained long enough.

In addition, the bacteria are also capable of exuding a bio-film, a gelatinous goo that the bacteria can hide in, protecting it from being reached by antibiotics. What's more these last two strategies can be combined, with the goo being employed to protect a ball of spirochetes. There is speculation that the bacteria's favored approach to goo-generating is to rob the body of the myelin sheath around healthy nerves—thus employing a wolf in sheep's clothing trick that our leukocytes then bypass when on the prowl for bad guys. (It hardly seems fair that bacteria can be so clever!)

The counter-terrorist measure that Ma'ikwe is relying on is an enzyme approach (lumbrokinase) based on the earthworm, Lumbricus rubellus. Ma'ikwe takes these in pill form (Nobody likes me, everybody hates me, guess I'll eat some worms... ). It breaks down the goo, which not only makes the little darlings more vulnerable to antibiotics, but it thins the blood, helping to improve blood flow—thereby addressing one of the classic Lyme symptoms of fog brain, perhaps resulting from insufficient oxygen flow to the head associated with goo-thickened blood.

OK, so that's a 25-cent tour of Lyme disease. Unfortunately, it's worse than that. Ma'ikwe must also cope with the likelihood of co-infection.

Once your immune system is besieged by Lyme, it creates a more favorable environment for additional diseases to join the party. Doctor Annette referred to this as "the soup." Given that this all started with a tick bite, the first group of co-infections to consider are tick-borne relatives of Lyme. There are three major ones that are the most common:
—Bartonella, which is a bacterium
—Babesiosis, which is a parasite
—Erlichiosis, which is a parasite

While all have symptoms that are similar to Lyme, they also have differences. Doctor Annette's strategy here is to keep our eyes open for the symptoms, but not to start with parasites (we'll get to those later). Her preference is to focus first on bacteria or viral infection, and she was willing to wait on Bartonella because the doxycycline that Ma'ikwe is currently taking for her re-emerged Lyme symptoms is equally effective for Bartonella.

Thus, Ma'ikwe got blood work done Wed (the results of which aren't back yet) to look for the most likely opportunistic problems beyond the tick-borne options. This represents casting a significantly wider net with which to strain the soup (no doubt straining the metaphor at the same time). Here are the four we're looking at:
o Epstein-Barr (herpes IV), which is a virus
o Herpes VI, which is also a virus
o Chlamydia, which is a bacteria
o Candida pneumonia, which is fungal

Doctor Annette's thinking is to deal with whatever is presenting, and that it's better to have a rather wide screen when looking for what's floating in the soup. Because it makes a large difference if you're treating a virus, a bacterium, or a fungus, it's better to have clear evidence of what's in the ascendant before investing a lot in medicine. That approach certainly made sense to us.

The overall strategy is to tackle whatever is being the most problematic, gradually promoting health through eliminating (or at least knocking back) whatever is being ornery. To do that, Doctor Annette has made a convincing case for looking at her health as a system that can be compromised in a variety of interactive ways. we need to be looking at the whole and not just for spirochetes. In the end, it doesn't really matter how much of Ma'ikwe's poor health is being directly caused by Lyme; it matters that she feels like crap and we need her to get better.

Are we having fun yet?
On top of everything else, I want to illuminate one last piece of the puzzle: herxing. This term refers to the pain and discomfort—often acute—associated with a massive die-off of bad guys in response to treatment. The conundrum here is accurately distinguishing between ill feelings that are the result of effective treatment (hurray!) or because you haven't gotten anywhere (boo!). In both cases you feel shitty.

Couldn't we just have a halo that appears over her head when things are getting better?