Great details dkel, thank you for sharing some of your research. This topic will probably be of interest to many of us who wonder about our personal relationships and how touchy-feely we can and should or should not be.
Love this. A little scary, because I had blood transfusions almost 25 years ago. How long do you think it will take before this disease is witnessed as a disease that’s just as dangerous as HIV.
@dkel
Spot on as always. I want to add there’s mounting evidence that more rodents or animals can carry and transmit the disease. It no longer just a specific deer tick leaping from deer to human or deer to tic to human. As with the junta virus,Lyme contraction is possible.
PS I’m in fog; exhausted pain; and nervous about an egd bravo medical procedure. I know the what, why,when,how but still don’t feel comfy when I’m nocked out or soon to be.
So, if typed something idiotic, b nice. If it’s not Clear, b nice and ask me
I too hope your transfusion was "clean" it is super scary to know there are diseases no one thinks about possibly affecting our blood supply. I think it will be a while before lyme is recognized the way HIV is. lyme is still a stigmatized disease all over the country, even where it is endemic. I have seen a lot more about lyme in the media lately with several celebrities as well, and love to see the exposure but not sure how seriously the disease is being taken. Seems to be a joke in the medical community to state than one has chronic lyme disease. I have had several doctors appointments this week and my fibromyalgia diagnosis is always what they focus on. No one wants to talk about lyme even though I tell them it is my primary concern!
Thanks! I needed that. When I was struggling it was due to neuro Lyme. All my nerves were affected, including the muscles in my tongue, which was why I stuttered. At first people thought it was funny, including me, but then I realized I had no control, then I got scared. This is when the Lyme took control of all my sensations. I was scared even more. Now, with this news that Lyme can be transferred, being married to a Lymie partner, make these new sensations ever more to be afraid of. I tell Steve what experiences are happening, and he will blurt out “remember that’s what happen to me when I started getting sick”. My tears are developing. He suffers from intestinal Lyme, his insides are in constant pain, constantly in the bathroom. On his bad days he will use the toilet up to 20 times. I’m suppose to be his strength. Falling back into the Lyme light is not a cup of tea, I understand that, but being sick at the same time as my husband, I feel like this is going to break me into the crazy state of mind.
I appreciate that you mention the "crazy state of mind" that we can fall into. It takes courage to admit that we can slip into that place mentally in a matter of seconds. Do you have a special way to cope, such as meditation or a hobby? I have found that keeping my mind busy on a focused task for a little while can be helpful. I am sorry to learn that both you and your husband are struggling with lyme. That must be very challenging and require a lot of patience! Are you both taking medications for lyme such as antibiotics? I am very proud of you for enduring what you are going through and still maintaining the best you can.
You are not alone re neuro lyme... I also stutter and slur sometimes on top of shaking like a leaf in the wind and sweating profusely. I agree in the beginning it is kind of funny but it does become scary. I get very scared thinking about what this disease is doing to my body and mind. I worry that I will never recover to the point that I was before and get scared thinking about what the future holds. I guess all we can do is stick together and stay positive. I am here for you and understand what you are living through. Hope this finds you well,
I like that you mention we can build a 'collective conscious' together. I believe that is absolutely true and that we have started to build one already just by talking about it. Our experiences, struggles, successes and failures are all similar and in many ways no one understands us the way we understand each other.
As well I agree that laughter is the best medicine. We have to be able to giggle sometimes as doing so is a reprieve from the world. A moment of clarity during which we can feel as a child again.
Great quote, dkel. Thank you for sharing with us. I agree that we can only go one day at a time and not look too far ahead. I like the advice that we should visualize where we want to be.
Now....that all is easier said than done ;) I try not to ruminate about the future but my ceaseless curiosity takes over sometimes.
Thanks David, we share this forum together, only thing is, is that he doesn’t use any social media. He is and has always been closed off to anything past the 80’s. Having this disease is the only window that has given him courage to speak to others openly, face to face. What I’m truly scared of, is his court date. Being the one who supports us, getting these haunting symptom flash backs, I only think of the worst. We are making it on my income, which is less than our monthly debt, and I think this stress is the part that will throw me off the deep end. I appreciate everyone’s input. You all help me feel like there is a breath of fresh air within our Lymies team. Thanks again.