Dr. Joseph Burrascano writes,
I take a broad view of what Lyme Disease actually is. Traditionally, Lyme is defined as an infectious illness caused by the spirochete Borrelia burgdorferi (Bb). While this is certainly technically correct, clinically the illness is often much more than that, especially in the disseminated and chronic forms.
Instead, I think of Lyme as the illness that results from the bite of an infected tick. This includes infection not only with B. burgdorferi, but the many co-infections that may also result. Furthermore, in the chronic form of Lyme, other factors can take on an ever more significant role--immune dysfunction, opportunistic infections, co-infections, biological toxins, metabolic and hormonal imbalances, deconditioning, etc.
When I say "Lyme," I am probably using Burrascano's expanded definition, just because it's easier to type "Lyme" than to write "Bb and bartonella infection, with possible babesiosis, blah blah blah."
Still, it's a little sloppy, so I thought I should try to write a mini-primer for my friends and family who (luckily) haven't had to learn all this stuff themselves.
The bite of a tick can transmit many tick-borne infections (TBIs). What we usually talk about with Lyme and associated TBIs are the following:
* Borreliosis (infection with Bb)
* Bartonella or bartonella-like organisms (BLOs)
* Babesiosis
* Ehrlichiosis and anaplasmosis
Along with these diseases, patients often have dysfunctional immune systems which leave them vulnerable to chronic viral infections, such as Epstein-Barr, HHV-6, and CMV. (I have high EBV and HHV-6 titers.) Other opportunistic bacterial infections can be a problem, such as C. pneumoniae.
As chronic Lyme disease works over your central nervous system, it can create dysfunction in your hypothalmic-pituitary axis (HPA), which can generally mess up a whole bunch of stuff, from hormones to sleep to hypotension.
Like I said, it's complicated. But where does all of this intersects with my life?
Here's what I know:
1) I have tested positive for infection with Borrelia burgdorferi. My clinical presentation also supports the diagnosis of Borreliosis ("Lyme disease"). I am currently being treated for Borreliosis.
2) My clinical presentation suggests a highly likely co-infection with bartonella. Standard laboratory tests are highly insensitive at detecting bartonella/BLOs, so the diagnosis is a clinical one. I am currently being treated for bartonella.
3) Testing for Babesiosis is unreliable and expensive, so again the diagnosis is a clinical one. I show some possible Babesiosis symptoms. However, they may resolve with treatment for Borreliosis and bartonella. Additionally, the drugs used to treat bartonella and those used for babesiosis cannot be taken together, so you have to treat them one at a time. Once the bartonella is resolved, we'll explore the possibility/necessitity of treating for Babesiosis.
4) Ehrilichia...not sure about this one yet.
5) I do have high titers for Epstein-Barr virus and HHV-6. Hopefully these viruses will resolve by themselves once my immune system is stronger and not fighting off bacteria all the time. If not, I may have to to on anti-viral treatment.
6) My hypothalmic-pituitary axis (HPA) is so thoroughly confused right now. At least that's my guess. But since my symptoms are primarily related to the central nervous system, well, my brain is unreliable at best. I'm just hoping I don't have permanent damage and will get proper functioning back when we kill the off the infection(s).
7) Then there's the URL of my blog...mylifewithcfs. Because I was diagnosed with CFS by doctors who refused to test me for Lyme, and I started my blog before my Lyme diagnosis. Do I have CFS in addition to Lyme? I don't know. Maybe. I am hopeful that once I treat the infections, the "CFS" will no longer be an issue.
Anyway. Like I said, I tend to lump all this under the heading of "Lyme." It's not quite accurate, but you gotta give a girl a break when her brain is being destroyed by bacteria. Right?
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I, too, was diagnosed first with CFS in 1991 and in 2007 it was discovered to be Lyme...I even remember the tick bite and infection back in 1984 after which I got "Arthritis" and fatigue, etc. eventually called CFS. It progressed to me being homebound for several yrs before being diagnosed. My docgtor says the CFS is a result of neurological late stage Lyme disease and coinfections....
ReplyDeleteEvery doctor has their own idea on these things, but one thing for sure, we are in need of treatment as long as it takes!
I found your blog through google alert and find it very interesting.