We wanted to offer some advice for someone recently diagnosed or treating and frustrated.
I have lived all stages of this disease and understand no matter what stage you are in currently. I get it.
Reach out to others that understand. Don't join every group, stay only in compassionate ones that focus on solutions, success stories, humor and healing. Empower yourself with education. This is how we run groups.
At one point in time, I genuinely felt there was no hope. I was convinced I would not survive. I could not have been worse or felt worse than I did...but I healed and continue to heal despite that.
My job in this world is to share my story because just telling it may be what someone needs to keep fighting. I help this community because I know without a doubt I can help.
There will be setbacks. Sometimes you will feel like you are going backwards. Healing from these diseases is complicated but it happens. It takes hope, it takes mindset.
Above all, you will be tested, but you can do this. You will come out on the other side different, a stronger version than you can ever imagine.
Hold on to Hope. You are worth fighting for. I promise it can and will get better. I will walk beside you until you believe that too. You will Rise Above. 🤜💚🤛
"Healing takes time. I look at Lyme as an onion that you have to peel layer by layer to get better. If there's one thing Lyme has taught me is to trust the process and be patient and trust your doctor. If you are lucky to have access to an amazing doctor then "patience " is key. The other thing is stress is so bad for anyone with lyme and it's something we must get under control. Last time I relapsed it was 100 percent due to stress. As crazy as it might sound, learning gratitude has changed my health and mindset. Please know it took a long time for me to get better but I have learned so many lessons on the way."
"I felt no improvements for the first 9 months so I understand having doubts if treatment is working. Eventually, I started having some good days. Then they finally outweighed the bad days. Healing is slow because our bodies aren't made to withstand attacking these diseases too quickly. We simply wouldn't be able to tolerate it. I feel having faith in a doctor and sticking with their guidance (if they are reputable) is what brings healing. Otherwise you build no history with a doctor and that takes time for them to deeply understand your case. I know it is hard, trust me. But you can heal with a steady building plan and faith that your doctor knows what they are doing. Over time you will see you are healing. Sadly it isnt fast, but this is how every recovery story goes, slow and steady. I think staying consistent with my protocol and doctor's advice was the key."
"Chronic lyme disease and its co-infections can decimate your body down to a cellular level. Recovering from this kind of an injury to your body is never a quick process. In fact, as we are working to do it most of us feel like you are making no progress at all sometimes for months and months, despite all the hard work and effort. It sounds cliche, but this journey is truly a marathon not a Sprint."
"In chronic Lyme disease (over one year of Lyme infection) an average length of treatment is 2 years. This is an average, and some respond more quickly than others. For example, some may recover in 6 months while some may require 3 or more years."
"In contrast, people who make the effort to build a solid restorative foundation have a high probability of achieving wellness and enjoying normal life!"
"You're going to get through this. There are people out there who were in your shoes but have now reclaimed the life they once had. They stayed the course by listening to their bodies."
"As thousands of patients will tell you, you can reach remission by shifting your focus from diagnosis, to treatment, to rejoining your life. Give each step the time it deserves."
ADVICE regarding SUPPORT GROUPS:
Please consider what I am about to say. This advice comes from my heart. I speak from a place of understanding. I hope you all know by now, my intentions are one thing, to help you.
First off, I support many FB support groups as there are many great ones. I run more than 10 and created all of the Rise Above groups. I've also been a member of almost ALL of them at some point.
💥LEAVE the groups that bring you down and focus on just suffering. Uplifting messages, education for understanding and solutions to empower have always been our focus in the Rise Above groups. We also support but it isnt every post.
When I left those types of groups, I did much better. I felt different. Pay attention to what you gain in the groups you are in. How you feel after being in there. Try leaving them as a test. If you find you change your mind, simply ask to rejoin. No biggie.
I say all this because I speak to hundreds of people weekly. The things they read and hear in other groups disturbs me. The way it effects sick patients saddens me. The way members are targeted by scammers sickens me (I boot them immediately and have hundreds blocked to prevent them from ever joining my groups in the first place). The things allowed and not allowed in other groups shocks me. Not all but a lot of them. We run a tight ship here and will NEVER allow argumentative and combative comments. We are on top of advocacy efforts, new studies and hopeful news to focus on and share with you as well.
Walk away from negativity and RISE ABOVE.
Please let me know how it goes if you try my advice. 🤜💚🤛
Check out the two groups with recovery stories to give you hope.🥰
RISE ABOVE LYME STORIES OF HOPE
LYME SUCCESS STORIES
RISE ABOVE LYME SOLUTIONS group is great option as well. It is a place where we only discuss solutions. It is a way to find support but also avoid seeing posts that may trigger you. A fun escape from support groups, even for me.
I feel strongly that learning how to reduce and eliminate symptoms while you treat these diseases is key to coping. So please visit my favorite resource.
ADDITIONAL FAVORITES TO ENCOURAGE YOU:
Distractions were important to me during my worst days of treating and suffering. Here is a list of ideas that may help you cope on your bad days.
Why it is important to seek it out and many examples gathered.
LYME LITERATE THERAPISTS
I developed a list that took over 5 years to create. Lyme literate therapists for each state.
MAKE A LIST
How making a list of things you want to do can help keep you focused.
RISE AND RECOVER
A guide to Rising above common mistakes in treatment.
Disclaimer: Rise Above Lyme makes no claims about any possible benefit of using any product mentioned within this site. Always consult with your doctor before adding anything. The information shared is based on personal experience, years of accumulated researched resources from Lyme Literate doctors and polls conducted within Lyme groups from actual patient experience using these solution ideas.