Monday, November 10, 2014

About Ebola, Lyme and the CDC....

I want to express some of my opinions regarding Ebola and the CDC's plans to contain it. Fortunately, it seems that the immediate threats have passed and all has turned out well. It is, however, an issue that touches my heart.  I am a graduate nurse and have practiced my profession for many years, long enough to know that medicine is not an exact science. No matter how knowledgeable those in the medical field claim to be, there is always more to learn.

I learned when attending a national diabetes conference and sat in on presentations about new cutting-edge medications, that it take years for the latest treatments to be researched sufficiently and pass grueling safety tests before being released for practical public use. This means that the practice of medicine is often behind their body of knowledge by as much as several decades. Sadly this can mean that even when medicine is on the "cutting edge", its practice often is not.

The CDC (Center of Disease Control), in my opinion seems to be a medical organization that is the slowest to catch on to what seems to be a common body of medical knowledge regarding various communicable or infectious diseases. It seems that it is the government agency that is to deem fact what the public already knows. They seem to truly "lead from behind" and I have personally experienced the negative effects of this organization in regards to their guidelines for diagnosing and treating Lyme Disease.

I suffer from Chronic Lyme Disease myself as a consequence of not being diagnosed early. Due to the CDC guidelines, I and a good many other were not diagnosed for a very long time. In my case it took three and a half decades, though I actively sought answers to my growing medical issues long before a Lyme-Literate doctor finally diagnosed my illness as Lyme Disease.

Since then, I have more than once considered going to my local veterinarian for more up-to-date treatment of my Chronic Lyme, for their practices are not hindered by the CDC.  Fortunately there are many doctors who have stepped away from the CDC's guidelines in recognizing and treating Lyme, though if caught doing so, they may well run the risk of having their medical licenses revoked or made to dump out their Lyme patients, or be "run out of town",  all devastating not only to the doctors but to those afflicted with this illness that seek care from doctors that are more enlightened than those that follow the archaic medical protocols prescribed by the CDC!

Why did two of the nurses who treated the first man to come down with Ebola in the US, contract the illness?  They were careful to gown and glove per typical standards used for isolation procedures. Why does it take an extreme haz-mat suit to keep a person safe from this illness, and just how far do our bodily fluids extend?  If this disease isn't airborne, can it still be transmitted by sneeze which carries bodily fluids to a distant radius around the person and when those contaminated particles land, how long can those germs survive, especially if not contained in an area that will be sufficiently treated to eliminate them?

I don't believe in cutting individual freedoms, but erring on the on the side of caution seems more appropriate to me than risking the spread of a disease that is too often fatal? Before I left nursing I tested positive for lots of illnesses that I never had full blown symptoms for, but had been exposed to in my work.  I eventually switched my profession to decrease my exposure,when I kept getting ill, as I didn't seem to have the same resistance to infection that my peers did.

When I was diagnosed with Lyme disease, my doctors, with good reason, questioned if all my symptoms of thirty plus years prior were caused by Lyme, or a result of having Lyme that perhaps made me more susceptible to other acute illnesses? I was treated for co-infections that typically accompany Lyme as treatment rendered me only temporarily better. Despite negative tests for many of these co-infections, I learned that there are different strains of most infections that tests, if available are not always sensitive enough to screen for, though treatment for them did improve my health.

While giving flu shots one season, I learned that a patient's great grandfather lived through such a severe flu epidemic in the United States that being a medical student, he was taken out of school along with his peers and given shovels to bury the dead, as there were not enough people to bury them fast enough to contain the disease. I also learned that their remains would still be considered contagious if exhumed today.  Read about Plum Island and the experiments that went on there that involved animals with open pens and about the bird estuaries nearby, and the big outbreak of what has now been named Lyme Disease that broke out across the water in Lyme, Connecticut (hence its name). Medical science is smart about containing disease, OR IS IT?

I side with those that dare to err on the side of caution. I live with a disease that the CDC considers to be rather rare, though recently they have had to admit that its incidence is higher than they thought. I am one of the patients that wasn't diagnosed properly for too many years due to the CDC's guidelines, and the CDC doesn't currently even recognize that Chronic Lyme Disease exists though to be sure insurance companies do?  The CDC also believes that if you tested positive for Lyme and were treated and still have symptoms, that your illness would not benefit from on-going antibiotic treatment though vets and lyme-literate doctors believe that if Lyme symptoms persist, then active infection is still present and will and does respond to treatment. The CDC leading from behind means that many of us with either Lyme or Chronic Lyme are left undiagnosed and untreated!

From my experience, I wouldn't believe that the CDC has all the facts regarding Ebola, even though Ebola has existed and been treated for many decades.  Call me "a right-winged nut", I am not afraid of names, but I am afraid of illnesses that are hard to cure! Interestingly, I never remember having a tick bite or a bull's eye rash despite that being part of the criteria for diagnosis of Lyme per the CDC guidelines.

I don't believe that the CDC is informed that Lyme can be transmitted sexually or in utero, though both of my children tested positive for it with no history of any tick bites, and my symptoms dated back to before I was pregnant and my children's symptoms from the time they were newborns. Years later they both tested positive for Lyme after a Lyme-literate doctor diagnosed me and I described years of my kids being ill. Lyme mimics other illnesses and many doctors did not even think to test them or myself for Lyme disease, believing what they had learned through the CDC that Lyme is a very rare disease.

When it comes to contracting infections, it is common medical knowledge that some people are more susceptible than others.  A person's immunity to diseases varies greatly according to their own health as well as age. I know that my immune system has been weakened by my illness and many seniors and young also have less immunity to contagious illnesses and may also have more difficulty fighting off infections when contracted. This should be common knowledge for all nurses and doctors and most especially if they work for the CDC, such as Kerry Hickox does? Why was she so resistive to being quarantined? Perhaps she was more interested in keeping her employment by the CDC and pushing its political agenda instead of respecting that all caution be employed to prevent risk to anyone else just in case she had contracted the illness and did not yet exhibit overt symptoms?

They say that doctors practice medicine...and they have used their words correctly for that is is exactly what they do and nurses do likewise! They practice what they know, and their body of knowledge expands daily and is never an exact science, not even for diseases that they have treated for decades! Mandated quarantine for a limited amount of time to be sure that a person exposed to the illness doesn't have the illness and will not spread infection is really not that hard!

I refrain from wishing that Kerry Hickox experience a difficult-to-treat disease herself and then view this demand with a new perspective. Can it really be asking that much of her or anyone else that has had direct contact with Ebola patients to sacrifice their time and limit their exposure to the world for a short time to be in quarantine for the safety of others? She seems pretty selfish to me and no hero at all, to not be willing to sacrifice a few weeks of her life in the world at large. She might even gain some appreciation of what it is like to be sick and shut in for a while, making her an even more compassionate care-giver who better understands what life is like for her patients!

Again, I am glad that so many that had to watch for symptoms have NOT manifested Ebola, but I believe that it is when we let down our guard and vigilance that such an epidemic could happen. With all those that have been sent to help with this horrible outbreak in Africa, I think it will be in everyone's best interest to let those that govern us know that you appreciate their vigilance in exercising strict caution. What is at risk could well be my health or yours!.