Once again I awaken to the sound of my own heart pounding along with about 10 other symptoms that remind me quickly what Lyme Disease is all about. It’s a disturbing feeling when you first realize that it’s still there! I always hope that I will wake up one day and ‘it’ will be gone- possibly the whole Lyme Disease and co-infection ‘thing’ will have all just been a nightmare.
As I lay there taking notes of what parts of my body are cooperating today, I am reminded that ‘this’ is
my reality and I must deal with it. Even though most of the world does not understand Lyme and what I am going through, it’s still as real as rain, whatever label is put upon it.
my reality and I must deal with it. Even though most of the world does not understand Lyme and what I am going through, it’s still as real as rain, whatever label is put upon it.
The symptoms that he average Late Lyme patient deals would compel most people to stay in bed.Yet the days and months and for many of us, years roll by and our symptoms are still with us. Some worse, some better, and even some new ones can crop up over time.
I call us the ‘Lyme Pioneers’ since the medical community is still trying to prove what Lyme is and if it can become chronic?
I call us the ‘Lyme Pioneers’ since the medical community is still trying to prove what Lyme is and if it can become chronic?
Usually in the “Lyme Cocktail” comes a few other co-infections and viruses. Along with probable heavy metal toxicity and maybe even a little micoplasma infection and more.
For about eight years now I’ve been dealing with Lyme symptoms. I got diagnosed in 2006 almost four years ago soon. I have really learned how to make it part of of my daily routine is put on my ‘Positive Attitude Suit’. Rolling back over and just going back to sleep won’t get me any further in this journey through Lyme and co-infections. So I pep talk myself, finding the strength to get up and make it all work better than yesterday!
Part of healing anything includes making wise decisions not only about what you do but also who you put your faith and trust in. Many people with chronic health problems lose contact with a number of their friends and family.
We are just too tired to reach out as often as we did and so time just ticks by and the closeness often fades. I think if others truly understood what can happen with just one walk in the park with infected ticks, they would be more supportive of what is really going on with this controversial disease.
Part of healing anything includes making wise decisions not only about what you do but also who you put your faith and trust in. Many people with chronic health problems lose contact with a number of their friends and family.
We are just too tired to reach out as often as we did and so time just ticks by and the closeness often fades. I think if others truly understood what can happen with just one walk in the park with infected ticks, they would be more supportive of what is really going on with this controversial disease.
Ticks that are infected usually carry other infections besides “Lyme” (Borrelia Burgdorferi- Bb),
such as Rocky Mountain Spotted Fever (RMSF), Babesia, Bartonella, Ehrlichia, and more. With the symptoms being similar to other illnesses such as MS, ALS, Parkinson’s and more Lyme is known as the “Great Imitator” just as its cousin Syphilis was.
Some of the infections are similar to Malaria and relapsing remitting fevers. Many can return months years later, as we can never kill all of any infection in our bodies. We just manage the infections and put them into remission.
To this date technically the cure is unknown for Lyme and co infections. Yet many have regained their health through various methods. For some others the prognosis has not been as fair.
When undiagnosed or worse even mis-diagnosed for years the patient is already so taken over by the infections that are thriving unattended, that recovery is slow and often not as successful. The vital organs are all affected within a few months Lyme Literate Doctors say.
Some of the infections are similar to Malaria and relapsing remitting fevers. Many can return months years later, as we can never kill all of any infection in our bodies. We just manage the infections and put them into remission.
To this date technically the cure is unknown for Lyme and co infections. Yet many have regained their health through various methods. For some others the prognosis has not been as fair.
When undiagnosed or worse even mis-diagnosed for years the patient is already so taken over by the infections that are thriving unattended, that recovery is slow and often not as successful. The vital organs are all affected within a few months Lyme Literate Doctors say.
My symptoms range from muscle tightness, repetitive strain type symptoms to tingling, osteoarthritis in two areas of spine, large joint pain and stiffness, digestive issues, skin problems to nerve damage down the right side of the entire body plus another dozen or two. One of the more troubling ones is the visual problems including my heartbeat always pounding though my right eye and ear.
I’ve learned how to manage most of them enough that I can function. Without the funds so far to get to a doctor that can treat Lyme I have had to pursue alternative methods as the money allows. Soon I would like to be seen by a Lyme Literate MD and a Naturopath, since under knowledgeable doctor’s care many people are having success. However to just continue to go to doctors who are not up to date on much about Lyme at all is exhausting and has become a problem for many Lyme patients.
Many Lyme patients have great difficulty finding a qualified doctor to treat their illness. Many doctors have and are being investigated by the medical board for treating Lyme patients outside the IDSA’s guidelines.
The state of our health is caught in the middle of a controversy over who is going to pay for the long term treatments required. The IDSA is currently under investigation for conflicts of interests for these guidelines. They're policing themselves and Pharma and Insurance companies are pulling the strings it seems.
The state of our health is caught in the middle of a controversy over who is going to pay for the long term treatments required. The IDSA is currently under investigation for conflicts of interests for these guidelines. They're policing themselves and Pharma and Insurance companies are pulling the strings it seems.
Both my son and I got turned down by one doctor since we already have been diagnosed with Lyme. This doctor is under investigation and could jeopardize his license if he treats us. Double jeopardy for us.
Not knowing this I left a couple of messages on their answering machine stating we have Lyme and need help right away. I was assuming we were on a wait list only to find out when I got the office in person again a year or so later that we could not be seen because of this. Meanwhile I have family who think I am not ‘trying’ hard enough to get treatment.
Is it any wonder that the average Lyme patient feels just a little misunderstood and invisible?
So out of this frustration “Lyme Love” was born about a year ago – early 2009. I have recently registered the business name Lyme Love and parked the domain name for the purpose of becoming a non profit in the near future. I am looking forward to what we are going to do with this Foundation.
My heart felt thanks to those friends and family who have stuck beside us during this very difficult time. A big thank you to all the online Lyme community- you are a continual source of strength and inspiration.
I was prompted today by a friend online in our Lyme community who asked if any of us ever feel like giving up? It got me thinking about what keeps us going under adversity.
When I wake up every morning and feel my symptoms still there waiting to be recognized I remember my children. That fuels me up and provides that motivation and then I feel grateful that I am awake. Whatever it takes to keep us going. We have lost much with Lyme including many friends and family. Those that are left are amazing people and I feel a sense of gratitude for what I have.
My mom continues to be a source of motivation to me as do both my sisters and my brother. Their compassion helps keep me going.
Alexis and Jason- 1995So it is time for the world to pay attention. This problem isn’t just going away!
