The neurology specialist in NYC had informed me on the spot that I had acquired Dysautonomia. As a result of having Lyme my autonomic nervous system was now damaged. This explained my erratic heartbeats, dizziness, difficulty breathing and much of my digestive difficulties, as well as, why my body couldn't regulate temperature properly.

What I learned yesterday is that the Lyme didn't just progress into my autonomic system, it triggered a neurologic auto-immune disease (NAID). I now have a Lyme complication called Chronic Inflammatory Demyelinating Polyneuropathy (CIPD). (Similar to MS, but in the peripheral nerves)

What is CIPD?

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.

This is scary stuff. It's a far cry from being told in 2005 that I didn't have Lyme. It's a leap across The Pond from being told, when I was finally diagnosed in 2007, that Lyme is easy to treat with just a few weeks of antibiotics. It's the polar opposite from this idea that there is no such thing as Chronic Lyme.

What I'm learning now is that there is no proof that the infectious spirochetes can ever be eradicated from the body. In fact, there is "culture supported data suggesting otherwise". (See study by Hunfeld et al)

Additionally, "persistent presence of non-infective Lyme spirochetes after adequate antibiotic treatment can lead to ongoing disease due to autoimmune mechanisms". And there is the highly likely presence of other tick-borne agents creating persistent illness.

This disease is anything but simple. There are at least 120 strains of the spirochete in the U.S. and we are learning that each one interacts with the body differently. Then there are the common co-infections of Babesia, Bartonella and Ehrlichiosis, to name just a few.  Each patient's physiology has it's own susceptibilities and unique immune system. The spirochete itself can hide in tissue inaccessible to our antibodies and to antibiotics. It also changes forms, making it harder to detect and treat.

So, there are at least three possibilities for why some patients end up with "Chronic Lyme" (I use the phrase here to mean that the patient continues to be symptomatic once having had Lyme and having been treated with antibiotics.) First, the spirochete may not have been eradicated. It may have gone into hiding once faced with antibiotics, but can re-emerge. Second, the infection may have triggered NAID. Third, the patient could be experiencing both.

Now back to my case. I am a case of "treatment failure" and am still suffering due to having contracted Lyme Disease. The recommended treatment to help with the CIPD is Intravenous Immunoglobulin (IvIg), a human blood-derived product. It is extraordinarily expensive and comes with risks. However, insurance companies deny any treatment beyond a few weeks of antibiotics for Lyme Disease. So, my doctors had to find a way around that.

The current plan is for my PCP to submit the CIPD diagnosis and to have the IvIg given as a prescription which will be administered at home after the initial treatment. (It's a 4-hour session, once per week, for 9 months to possibly years.) The doc had to search for a company that could administer the treatment and was 'in-network' for my insurance plan. They will not be told that I am/was a Lyme patient. I am now a CIPD patient. All paperwork will have to be submitted under that diagnosis. We'll know in the next couple of weeks whether this will cut through the insurance roadblocks to treatment.

Here's the thing that makes me nervous. I am still going to be receiving weekly injections of Bicillin to keep whatever spirochetes are in my body at bay. That is, I'm still seen as a Lyme case. I am consistently told, however, not to mention this, as it will trigger the insurance to reject coverage of any treatment. But, what if I have a reaction to the treatment that puts me in the hospital? What if I have another health problem (they just discovered an "odd" cyst on my kidney, for instance), where I would not be getting my injections or I would not know if there are possible complications to consider because of the Lyme in my body?

It's not just the insurance company I have to worry about. Doctors don't treat patients with chronic Lyme respectfully. Since they don't believe it exists (despite lots of studies demonstrating the persistence of the spirochete) they think the patient is a hypochondriac or some other kind of psychiatric case. Once a doctor has decided that about you, it clouds his judgment about acknowledging your suffering or need of treatment for anything. I simply don't feel safe in a hospital where I might encounter dismissive docs. That's not good. I shouldn't be afraid to go the hospital. (more on treatment failure, what's behind this a Lyme patient's fear of doctors and what all of us can do about it in my next entry.)

For now, I'm going to do all that I can to get this IvIg treatment. At worst, I won't tolerate it and we'll have to stop. If I can tolerate it, the very least I can expect is symptomatic relief for some of my peripheral neuropathies (burning/tingling/numbness in extremities and the shaking). This may not be permanent. It's different with each patient, from what I can tell. At best, it might arrest the auto-immune disorder raging in my body. If that is the cause of some of my symptoms, I may not see those symptoms re-emerge.

What's unknown, is which symptoms I have due to the autoimmune disorder and which, if any, are permanent damage from the Lyme or ongoing symptoms of active infection.

The hope is that with the earlier treatments of big doses of antibiotics, we beat the active infection back enough that the ongoing low-dose injections are keeping whoever remains in my system in hiding and inactive. If that's the case, I shouldn't see a worsening of symptoms once the autoimmune disorder is arrested.

Of course, how we'll know what's been arrested and what caused what is very unclear. Still, it's my only hope. If the autoimmune disorder caused the Dysautonomia then the IvIg treatment could restore my autonomic system to normal and my heartbeat, breathing, digesting and temperature control might start functioning correctly. That would be life-saving. So, it's worth it to me to find out.

** quoted phrases are from "An Approach to the Diagnosis and Treatment of "Chronic/Post-treatment Lyme Disease" by Amiram Katz, MD and Janet M. Berkley, RN (Department of Neurology, Yale University School of Medicine)