My Lyme — My Voice
My name is Sarah. I am an advanced education medical assistant, laboratory, and IV technician. I have worked in the medical field for some years, in many trauma centers and clinics.
My journey into the ‘real’ world of Lyme disease began with my love for documentaries. My husband and I watch them regularly, and one night in February was no different. We came across a documentary called “Under Our Skin.” As we watched, I was shocked by what I watched. Working in the medical field I of course had heard of Lyme disease, and even had observed the “Bulls Eye” rashes on patients. But like most people, I was unaware of the full ramifications of the disease and thought it simply was a rash, accompanied with flu like symptoms and easily cured with a short course of antibiotics. Boy, was I ever wrong? I learned a lot from this documentary, and through much of it I found it hard to believe in this day and age so much disinformation, lies, and cover-ups occur in medicine. I found it difficult to get it out of my mind.
The following day, I went to work and was pumped. I wanted to observe the spirochetes, the Borrelia burgdorferi bacteria, the corkscrew-shaped bacteria that travel from the tick’s saliva and mid-gut into the bloodstream of the human host. I wanted to see these spirochetes under a microscope. It was all I could think about, so much so, I struck up a conversation with a fellow tech who, low and behold, had watched Under Our Skin the night before as well. Wild! We discussed at length how ‘our eyes had been opened’ and clinically how mysterious this disease was and all that it entailed. We drew each other’s blood to run tests on each other, and we were negative, but eventually we were able to see a positive sample come into the lab.
I eventually moved on from that hospital, when I was hired as an IV/laboratory technician to manage the clinical services offered at a local clinic, in Tigard, Oregon. My new boss happened to be a world-renowned doctor who specialized in Lyme disease and it’s associated co-infections, Dr. Stacey Raffety. There are no coincidences in life. While I came to this clinic with years of experience behind me, and the education into the world of Lyme disease has been life changing.
Treating patients with Lyme disease is difficult. Because one comes to love the people you treat and to see how they suffer and what they go through is nothing short of heart wrenching.
Most patients are in pain from head to toe, all day, every day and require the highest doses of pain medication on the market to just get through each day. The symptoms are many. Some included incredible pain, skin rashes/lesions, vision loss, mental breakdowns, sensitivity to light/sound, and chemical sensitivity. One patient was so sensitive to chemicals arrived for their appointment and had a seizure in the hallway of our clinic because a block away an entire building was sprayed for ants.
When I first began working at the clinic we had a patient who had been previously diagnosed as having Multiple Sclerosis (MS). She was in a wheelchair and brought with her MRI results which the radiologist confirmed a definite diagnosis for the disease. The woman was not convinced and came to see Dr. Raffety for a second opinion. After a thorough evaluation, Dr. Stacey Raffety suggested her symptoms were more classic of Lyme disease and not MS. She prescribed a long course of IV antibiotics and homeopathic tinctures, as time progressed the woman’s condition improved and at the end of her treatment she was walking. Her Lyme had gone into remission. Upon one final MRI, her brain lesions had vanished which confirmed Dr. Raffety’s suppositions of the earlier misdiagnoses of MS.
Another patient, a young mother, was so ill and also diagnosed with MS. She couldn’t speak, she also was wheelchair bound, and quite frail. I thought there was very little hope she would ever recover. With appropriate Lyme protocols, she has also had gone into remission and was able to return to a normal life and play with her two young boys.
Those are but two of the simple cases. There were others where recovery wasn’t as easy. In one instance, damage from the Lyme disease to one women’s body was irreversible inside and out. It was cases like that one which were the hardest cases to observe. People who would come for treatments week after week so desperate to regain their lives continued to suffer because they had sought treatment too late, and others were dying.
Then there is the financial aspects of the disease. Treatment for Lyme disease is expensive, largely because insurance won’t pay for the treatment, or the naturopathic and homeopathic medications used effectively to treat both Lyme and its co-infections. People run out of money, and no longer could afford the costly medication that could have been lifesaving.
This brings me to one of the hardest aspects of my work — the lack of recognition — not for me, but for those fighting Lyme disease. To watch patients suffer daily and told their condition was in their head, or there was no such thing as chronic Lyme disease, or there was no treatment for them was appalling. I saw first-hand the damage of an illness that supposedly did not exist. The array of seizures, vomiting, losing bowel function, suffering in pain, losing the ability to speak, walk, the chronic fatigue, and starvation due to the bodies inability to absorb nutrients, auto-immune disorders, skin burning rashes, etc., But, yet, none of these conditions were real? Mind blowing. Then to have insurance companies deny claims for chronic Lyme disease because they couldn’t pay for claims for a disease the CDC didn’t acknowledge.
I have seen infectious disease specialists at top hospitals deny Lyme disease can even happen outside of Connecticut. One infectious disease specialist in particular, comes to mind who called regarding a mutual patient told me, “Lyme disease doesn’t exist outside of Connecticut.”
I informed him, “your statement didn’t make sense.” I further explained to him “we have airplanes full of passengers that can fly around the globe in less than one day, and you’re telling me that not a single tick has hitched a ride outside of Connecticut in the last 40+ years? That doesn’t even make scientific sense.”
Patients who suffer like the multitude who are suffering from Lyme disease should not have the added stress of having the very disease they suffer from be disregarded, or not believed.
I worked with Dr. Stacey Raffety until her retirement a few months ago, and working with Lyme disease patients were some of the most rewarding, yet some of the hardest, and most taxing of my career, thus far. I continue to advocate for Lyme disease patients and support them in their fight for disease recognition, and proper treatment.
Dr. Stacey Raffety says
Thanks Sarah for posting on Louise’s site. Your insite and experience made my work so much better. We helped so many people. I know this document will continue to support awareness of Lyme. There is much to be done for those who suffer. Dr.Raffety
LA Edwards says
Thanks, Stacey and Sarah for taking the time to post on my site. My Twitter feed has been on fire since with so many people reading and retweeting your articles.I appreciate your part in making this little idea of mine bloom. It is my goal to give back to the Lyme community in the future. I don’t want to hear that even one person has experienced what I and so many others with Lyme disease have endured. Sadly, I don’t believe anything will occur until the new administration steps in and hopefully will make the appropriate decisions on behalf of the entire Lyme community. Thank you both again for your time and wealth of knowledge in this subject. Forever grateful. L
Man, it’s such a relief to hear somebody finally talking about my story. I got Lyme Lyme not once, but twice. I was diagnosed in 2003 and probably had Lyme for at least a couple of years prior. My life has never been the same since. I’m lucky to have had a supportive spouse and one of the leading physicians in Connecticut Dr. Steven Phillips. I’ve experienced so many symptoms that it’s hard to recount the mall. Not to mention the fact that I chased down so many blind alleys before it was finally diagnosed. There are so many people suffering from Lyme who are misdiagnosed. Think of all the money that’s going to prevent Zika and west Nile. If we had half those funds to research line we could eradicate Lyme and get a vaccine. Test for Lyme should be given the same way you test for glucose on your annual physical.
LA Edwards says
Hi Annette, I am so sorry that you went through all of that just to get diagnosed. I also was bitten twice that I know of and possibly a third on my head. Thank you so much for your comments I appreciate your time. I would have loved to have you tell your story on this forum. (hint, hint). But I too thought that it was time to begin a dialogue within the Lyme community especially for those whose voices weren’t being heard because they were unable to travel to the many functions and events this year. I too lived in Connecticut but made the commute each day to the Hudson Valley for work each day. And where I was bitten by two nasty nymphs. T was misdiagnosed for 10 years then finally found a Lyme Literate ND who I loved but retired not long ago. I too do not understand how the govt says in one hand they have no more money to give to Lyme disease research, but they find over a billion dollars in emergency funding for Zike and West Nile; Give HIV/AIDS $3.1 Billion dollars when only 50,000 new cases are identified each year and Lyme has depending on who you ask and even within the CDC 300,000 to 1 to 2 million cases of Lyme each year. And because there is no cure for Lyme disease and only a lucky few reach a very healthy remission for years, the number of Lyme cases are accumulating. This will if it already hasn’t created, will create an economic crisis which very well may exceed that of 2008. All those sick with Lyme and other associated issues will be on disability income, which is a fraction of my income when worked. A loss of income will certainly impact the economy if people don’t have money or have to use all of their expendable income on medical costs, they won’t be doing any shopping. I will stop here as the message is clear. A better means of testing for Lyme is not far off in my opinion. Thank you again for your interest and comments. I hope your health is better and you are enjoying a fulfilling life. L
LA Edwards says
Thank you, Sarah, for re-posting my guest blog posted as part of my campaign for Lyme Awareness Month, ‘MY Lyme My Voice’. I hope it helps draw those with Lyme to not only your site but my own site. The more accurate information that is placed on the web the more aware people will come to the dangers associated with this insidious disease. If I may be of help to you in any way in the future please let me know. Thanks again, I appreciate your efforts to advocate for Lyme disease. Sincerely Dr. LA Edwards