What to say to a friend who just figured out they have Chronic Lyme?
I want to say the things I wish someone had said to me. There is no one answer or certain path, but there are answers. There is help and healing. Lyme disease is a unique opportunity to get clear about what is important in life and act from that place. Lyme disease gets you in communication with your body in a new and deeper way. Lyme disease humbles you and asks you to muster all your will and strength.
Just Breathe and begin to rebuild your life based on what works. Every step you take towards healing, can help or hurt. Sometimes you feel better then much worse. Healing from Lyme is not a straight or well lit path. There are ups and downs. You have to treat Lyme at the pace your body can handle and buttress against the damage it is doing. It is so important to tune in and pay attention to how the treatment is making you feel, stronger or weaker.
I went back to a Lyme literate MD after a number of years working outside the system to try and get something covered by my health insurance. The doctor did a number of tests and then prescribed several treatments. Some things I rejected out of hand, concerned about the effects on my health and progress to date.
He also suggested IV Vitamin C and Glutathione. (Click the link for more info on these two treatments.) I asked two questions, to help me decide. 1.Will it make me sicker? 2. Will it make me gain weight? (I really wanted to know.) He said No to both questions, so I went ahead.
These are antioxidants, how could they hurt anything?
Two visits each week for 20 weeks. No of course insurance did not cover any of this. The IV clinic ramped up my vitamin C levels over a few weeks. My first visit I was shocked by the number of truly sick, weak people in the clinic, almost all of them like me had Lyme and coinfections. A couple of the people were doing chemo, but unless you read the IV bags for the drug names you really couldn’t tell. Everyone looked much sicker than me.
I am not an easy stick, so it took 2 or 3 tries the first visit. I left after the treatment feeling okay. In the week after the first two treatments, I was sicker than I had been in months. I was really concerned.
At my 2nd visit, I asked the nurses the same 2 questions I had asked the doctors. Their answer was a little different. They said that initially some people have a herx reaction. ( A Jarrish Herxheimer reaction is the bodies response to the endotoxin release from die off.) Every once in a while a patient will feel sicker, but by visit 10 or so everyone starts to feel much better. They too said, people don’t gain weight.
I was reassured, but this was not the case for me. I felt okay, but not better in any substantial way. In the months during and after these treatments, I got much sicker, developed new and more severe neurological symptoms.
I think that I opened the flood gates broke down biofilms and released a slew of Bb into my blood stream. It did what it does and caused damage. But Who knows? I also gained 25 unwelcome pounds.
I have spoken with a number of other patients, who say they also had increased symptoms and weight gain following Vitamin C treatment. Another doctor told me that any treatment can make you sicker if your body cannot cope with the consequences of the treatment. IV vitamin C and glutathione is one of a number of standard treatments for chronic lyme disease. My response to the IV treatments made me realize that even though I look pretty healthy, my body does not react in healthy or expected ways.
Now and going forward, I am designing my life with my health requirements front and center, a key part of my daily routine. I use Ayurveda and herbs. This is my way to rebuild my immunity and resiliency. It is 2 years later and I am getting back to feeling as well as I did before I did the IV treatments. I should have stopped it when I could feel it wasn’t working. I was hoping for a quick fix.
Now I know, build strength slowly and steadily. Tune into the effects of new things. Listen to and act in the best interests of your body. Go back to your nurse or doctor if you have questions or concerns.
What I would say to someone with chronic Lyme is that your health is worth the journey and learning. Don’t give up when things get tough. Keep learning and rebuilding. Get informed get treated and get better at the pace and in the way that works for you.