I don’t know what people did for support prior to Facebook and other on-line methods! I quickly learned that there were a number of Facebook pages and groups dedicated to Lyme and tick borne diseases. I joined many and “met” many people going through the same or similar things that I was. It was a blessing – and a curse!
I came to realize very quickly that many of the people on these sites had been sick for a very long time, some had resigned themselves to being that way for the rest of their lives. Some were angry (with good reason). Some were depressed (again for good reason). Some were VERY bitter! But some were upbeat and focused on helping others and giving a positive spin to everything. Those were the groups and people I gravitated to the most. The people doing what they could to help others. Trying to stay as upbeat as they could considering what they were going through.
I tried to say away from the drama as much as possible. I tended to just read and learn rather than engage. Because of some of the drama, I decided to start my own pages and groups dedicated to Lyme. I felt like I was doing something to help raise awareness.
There are many great pages/groups dedicated to tick borne diseases. I highly recommend you join one or two, even if it’s just to see that there are many people going through the same things that you are and that there are also many people plugging away at trying to change the way that tick borne diseases are diagnosed and treated and thought of!
Because of Facebook, I learned more and more about tick borne diseases. I also learned that I needed to question everything that I read and to dig deeper.
It seemed to me that the issue should be cut and dry! If caught early, Lyme is supposed to be easy to treat and symptoms are minimal. If not caught early, it gets harder and symptoms can progress. To add to the issue was that ticks could carry more than just Lyme. When you add other things to the mix, a proper diagnosis and treatment could be problematic.
Unfortunately, however the issue of what to call “Late Stage” Lyme took up more energy than how to properly diagnose and treat. Many started calling their illness “Chronic” Lyme because they had been dealing with their illness for months or years and yes, they were in chronic pain or had chronic fatigue. There were some in the medical community that started to bluster about the fact that “Chronic” Lyme wasn’t a real illness. Many said it was made-up. Research went into whether what people were dealing with was “Chronic” Lyme or “Post-Treatment Lyme Syndrome” or something else entirely.
Personally, I would love for everyone to stop using the term “Chronic” Lyme. Although chronically ill, we have either Late Lyme or a combination of tick borne diseases. On the Center for Disease Control and Prevention (CDC) website they define the possible signs and symptoms of untreated Lyme disease as being “Early Signs and Symptoms (3 to 30 days after tick bite)” and “Later Signs and Symptoms (days to months after tick bite).”
The later signs and symptoms, according to the CDC, could include:
- severe headaches and neck stiffness
- additional Erythema migrans (EM) rashes
- intermittent palpitations or an irregular heart beat (Lyme carditis)
- episodes of dizziness or shortness of breath
- inflammation of the brain and spinal cord
- nerve pain
- shooting pains, numbness, or tingling in the hands or feet
- problems with short-term memory
Most of those could be perceived as chronic issues if dealt with for a period of time! Get over the name! Get on with the research!