Something that I am asked a lot about is the connection between my two illnesses- Lyme disease and Reflex Sympathetic Dystrophy (RSD).
Did one cause the other? Which came first? Are the two even related at all…or were you just unlucky enough to develop both?
Because May is Lyme disease awareness month I thought it was a good time to try and begin to explain a little bit more about these two very complex medical issues and how they relate to one another.
As anyone who has been a patient with any type of long-term illness knows, you tend to become an ‘expert’ of sorts in your condition. There are just certain things that cannot be learned through a textbook… but are instead, earned, the hard way, through experience.
These past years of being in and out of doctors offices and hospitals has given me the privilege of meeting and sharing stories with a lot of others who are facing some of the same health challenges as I am.
It seems that the big difference between my case and theirs is that my RSD did not begin after an injury. Both times it began with an infection.
Through having this blog, several others have reached out to us, sharing that they too have been suffering from RSD after an infection—especially Mono and interestingly, many have also tested positive for Lyme at some point in their lives.
By most doctors, RSD is considered a “trauma disease”— It is usually a physical injury such as a sprain, fracture, or surgical procedure that causes it. Usually after an injury the nervous system shuts down within minutes to hours, but for some reason, in RSD patients, the nervous system malfunctions and continues to send constant pain signals to the brain... Kind of like a car engine that continues running even though the ignition is off.
It's unknown why some people develop this condition after seemingly minor injuries or otherwise benign infections.
However, it is well known that both viral and bacterial infections (like shingles, Epstein-Barr, CMV, herpes simplex, HIV, leprosy, syphilis, lyme, etc) can trigger a strong pro-inflammatory immune response causing a wide range of neurological problems.
These infectious illnesses can also cause widespread indirect nerve damage by provoking an autoimmune disorder, in which the immune system attacks the body's own myelin sheath (the insulating covering that protects the nerves)—think of it as trying run electricity through an extension cord that is missing the protective covering. The result is diffuse, searing neuropathic pain. I was treated with high doses of IVIG for nearly 1 year to try to reverse this process known as demeylination.
In this case, it is the immune system that never ‘shuts off’ and the infection which provides the fuel for this process to develop and persist.
The immune cells continue interacting with the peripheral nervous system, releasing pain producing chemicals and you begin to develop heightened activation of the pain pathways.
Because every peripheral nerve has a special function in our bodies, many symptoms can occur when these nerves malfunction. Some may experience numbness, tingling, and pricking sensations, sensitivity to touch, or muscle weakness. Others have more extreme symptoms, like burning pain, muscle atrophy, fainting spells, paralysis, ulcerative skin lesions, or internal organ dysfunction. In the most severe cases, you may become unable to digest food, maintain stable levels of blood pressure, or even regulate your body temperature. The end result is total dysfunction of all of these components, resulting in hyper-arousal of the nervous system, making any type of normal stimulus (like touch, light, sound, vibrations, etc) painful and intolerable.
It is difficult to say exactly which of these symptoms can be directly and solely ascribed to either Lyme or RSD... and which are more complex in origin.
There have been several papers recently discussing the possible role of previous infections (particularly Epstein-Barr virus (EBV) in the development of autoimmune disorders.
Is it possible that this has some significance in the development of an autoimmune component leading to RSD?
Are certain people more genetically predisposed to develop symptoms of RSD post- infection than others?
And, could this account for the degree of severity of the condition in a sub-group of RSD patients, like myself?
It seems reasonable to believe that the connection between these illnesses is not as rare of an occurrence as most might think.
People are like jigsaw puzzles. Take a piece out and you no longer have the whole picture…
It goes without saying that this is not a medical opinion :) but just my 2 cents worth. This is a topic I think about a lot as I continue to recover and gain back what these illnesses have taken away from me. I know I have a God who is bigger than any illness and that He has blessed me with doctors who are curious and open-minded enough to make the connection between these illnesses in my case.
…There is definitely more to come on this…
The Lyme documentary “Under Our Skin” will be airing on PBS WLIW channel 21 in New York this Saturday, May 21st @ 3pm! Set your DVR's!
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