Rubik’s Cube, Reprise

I think this information is important. Lyme is NOT easy to treat. Nor is it hard to get. Nor can you be guaranteed a life without continued symptoms if you take a conservative dose of antibiotics until you feel better. No guarantees with this disease.

So. . here is the repost to help people understand that this is our own personal Rubik’s cube. Try solving it with a traumatic brain injury, which is frankly, what anyone with infectious diseases in their brain does on a daily basis.

So, as we were driving to the Senate Hearing on the Bill to protect docs who treat lyme by clinical diagnosis, Molly, my son, my husband and myself were all discussing Lyme Treatment, of course.

I know one person who has lyme that is well. ONE. And I only know her virtually. She has saved my life on more than one occasion. And my marriage. She lived in hell, like the rest of us, but now she has clarity. She KNOWS that all this ‘fighting for our lives’ business is worth it. Good thing, because most of the time there is nothing in my life to make me believe that. So, I need to trust her.

But, why is she well? And how does one person being well give me hope, when there are thousands who are not, many who have died this year alone, and kids being born to moms with un-diagnosed lyme every day?

Because if one person figured out treatment for her particular form of this insipid disease, then more of us can. It is like a Rubik’s cube. My friend Leland can do one in no-time-flat. Me? Not so much. My sons work it with the instruction booklet. Try one twist to the right. One to the left. Get ahead. Step backward. Get boxed into a dark alley by Bartonella. Waltz around with Babesia. Try another herb, another antibiotic. Add another layer, try another probiotic. What about frequency therapy? Sauna? How about light therapy? Diet? Raw Foods?

Yep. If I know 200 people with CHRONIC LYME disease, there are 200 different rubiks cubes to solve. When I used this analogy, my kid with serious cognitive trouble glares at me. “But MOM! I can’t solve the Rubik’s Cube!” Nope. Neither can I. That’s why we have Anne coming over with Freddy to help us on Wednesday. Carrie in the afternoon. Dr. P. sees me on Wednesday. Isabelle is going to sew some casings and hems to get some curtains on our windows, finally. That frees up the little energy I have to make appointments for the acupuncturist, check in with the frequency therapist, administer coffee enemas, the coconut oil, the homeopathics. We just keep twisting until we find something that feels like it is working.

Too many cooks spoil the soup? Is it like a big wapatooie party where everyone throws the liquor in the Kool-Aid and everyone gets loaded? Kind of feels that way. . but it isn’t. We have to find the right combination because there is no protocol that works for everybody. Nothing like a life threatening illness to make you learn to trust yourself. Nothing quite like it.

Now, back to the rubik’s cube.


3 responses to “Rubik’s Cube, Reprise

  1. My god, I could not have said it better myself. Thank you, J.
    I suck at Rubik’s cubes, too. This is one that I’m determined to solve, though.

    All my love.

  2. Your words completely express my emotions about this journey…this life with lyme. It changes everything and gets the cube all out of order so you can’t remember how it went back together in the first place. Your words are extremely profound for me today. I needed to read that, thank you!

  3. Wow…I can’t even begin to imagine what you’re going through or how you get through each day. I hope you solve your rubix cube soon.

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