Wednesday, September 19, 2012

It's been a while...

Yeah, so it's been a while since I last updated this blasted thing. In 2010 I'd hoped that by 2012, I'd be writing about how I'd kicked Lyme's ass and was a super ninja warrior. Or something.

But I'm not. Since my last post, the Rocephin and/or my family history of gall stones led to the removal of my gall bladder. In May of 2010, I was probably the best I'd been since this whole thing started. I was up to maybe 45% of "normal" energy on a good day. Cognition was good. But then there was surgery and I stopped Rocephin for a few months. And when I went back on the Rocephin, it just didn't work anymore. Eventually I had the PICC removed.

And slowly, very slowly, I started to slide backward. I've tried a number of treatments--drugs, herbs, detoxing--and in June of this year my doc suggested that I could try IV doxycycline. Which is more complicated than IV Rocephin and looks to be fairly expensive. It'd also be difficult for me to do in the summer, since doxy makes me very sensitive to the sun (and I already burn very easily).

At that point, I was pulse dosing my antibiotics--two weeks on, two weeks off. I felt so much better on the "off" weeks. Probably because I wasn't dealing with side effects plus die off. Still, I just got to a point where I couldn't do the drugs anymore. I needed a break. So I'm on a drug holiday, and not the fun kind in Amsterdam. I've been off antibiotics since June.

June and July were pretty great. I spent July in Oklahoma with family and friends, and despite the raging heat, I felt pretty good. Just being there, in the company of a dear friend, in contact with the land that has been my family's home for over a hundred years, land that is twisted into my DNA, land that I am connected to on a very primal level, well, all this was good. It was healing in itself. It fed my soul, which has kind of been wasting away.

Now it's September. In a few days I turn 34. In a couple of months, I'll mark the five-year anniversary of this illness. Physically, I'm not doing well. I'm back down at around 20%. Cognition has slipped a bit, but I'm still at 75%, which isn't terrible. I'm in a lot of pain. Emotionally and spiritually, I'm kind of falling apart.

I need to figure out what to do next. I can always just wait and decide later. I can go ahead with another drug or another treatment plan altogether. Or I can just stop and make peace with the idea that this is it. That this is my life now and for as long a future as I can picture. And then, with that acceptance, go ahead and figure out what I can and can't do, where my limits are, and try to make a life here, in this moment, without all the striving and struggling and drugs and side effects. I know it kind of sounds like quitting, but at some point the treatment is more damaging than the disease.

And I don't know where my life is headed. I won't go into specifics, not on the Internet, where anyone can read this. But I will just say that might lose or maybe am losing or have already lost the structure and security and...crap, a lot of shit that I've built my life around. And I'm older and lonely and so fucking tired. I feel like there's little I can rely on, and my future is a big blank dark space.

So there's the update. No awesome progress report. No happy ending.

16 comments:

  1. Hello, Please think about getting help for the emotional side. You sound like you may be heading in the direction of no return. Despite your illness life is still worth living and science is evolving all the time. What they can't treat now they might be able to treat in a year. Try different major hospitals. Don't give up!
    Hugs,
    Samantha

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  3. Ndo.

    That's an Igbo word. It means something like "my sympathy", "my understanding", "please endure".

    But perhaps my words will not help you. I've been where you are and am a little bit better. I got better after the morning when I postulated that at least 50% of my problems were coming from the gut.

    I then discovered SCD and GAPS, 2 diets used for healing Autism.

    Strongly restricting my diet as described in the GAPS book allowed me to go from 10% to 25% energy in 1 week. Enough to be able to drive the shops when needed.

    I've tried so many things, but in the end this is the one that stopped the continual decline.

    I'm far from well. There's a long way to go of course. But the gut-as-cause theory has held up as consistent. I haven't had the typical, cruel pattern of higher energy followed by reversal. Instead my energy has stayed consistently higher.

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  4. There is a Lyme petition at the following address:
    https://petitions.whitehouse.gov/petition/reform-infectious-disease-society-america-treatment-guidelines-lyme-disease/Pj9jG0pX

    The petition will only be up until 2/10/13, and we need 25,000 signatures for the White House to review and respond.

    This is the best chance for raising Lyme awareness I have seen, so please spread the word!

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  5. I haven't read your blog in a couple of years. I checked back in today, hoping so hard to see you cured or dramatically improved. I will keep hoping. We have never met, but I hope you know that there are people out there in the universe who have been inspired by your writing and who still hold out hope that you will triumph in this journey.

    -an old friend of Nick's

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  6. Agree with the previous comment that the gut is the cause of, and solution to, many health problems. At a bare minimum, eat fats, and eliminate wheat and sugar. You may be able to cure yourself through diet:

    http://perfecthealthdiet.com/2010/07/eleven-steps-for-overcoming-alzheimer%E2%80%99s-and-other-chronic-infectious-diseases/

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  7. maybe consider your symptoms are mostly Bartonella? http://www.healthcentersofamerica.com/information.cfm?id=140

    it seems really hard to treat , as you know very well!

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    1. I did have bartonella. However, we treated the heck out of it, and it *should* be gone. (But then I'd say the same about my Lyme...)

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    2. these guys http://books.google.com/books?id=WD88hd-obU8C&pg=PA168&lpg=PA168&dq=amikacin+or+gentamicin+for+bartonella&source=bl&ots=PkyizW694A&sig=fW8HjFFKLGYUbMqMP3jEZEPYnac&hl=en&sa=X&ei=FWqfUambJ9H94AOqxYD4Aw&ved=0CFAQ6AEwBQ#v=onepage&q=amikacin%20or%20gentamicin%20for%20bartonella&f=false
      act like Bartonella can't be killed my any antibiotic except the aminoglycosides because it hides in skin cells. And no doctor wants to casually prescribe them because the theraputic dose is very close to the toxic dose.

      I'm trying levaquin for Bartonella (if it works i'll say so in a month :) )

      bye and thx for all your info.

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  8. I took Levaquin for a total of a year (six months, a break, then six more months). So I'm really hoping the bart is dead.

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  9. did you have any kind of Bartonella rash?

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    1. the rash I have looks exactly like this (but more of them) http://hardinmd.lib.uiowa.edu/dermnet/catscratch6.html

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  10. http://lymepie.blogspot.com/ has similiar symptoms (she is helped by glutathione , maybe it would help u as well?)

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  11. Kaleigh Ahern improved her Lyme symptoms by using a Rife machine and giving up gluten, grains, refined foods, and sugar.

    See "The Lyme Wars" in the New Yorker:
    http://www.newyorker.com/reporting/2013/07/01/130701fa_fact_specter

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  12. I found your site as I was researching Bicillin injections. I have been reading here for a few days. You have so much important information for other sufferers. I love to read in order , but got excited and jumped to the end because there was only 1 blog in 2012 and I thought, my God she did it! I am so sorry to hear you are in this place. I want to thank you for you writings. Yours, and many others have helped me to find peace, and come to the realization that this is a very long process. I lose sight of that quite often, suffering for 10 years. I liked your statement, you are not giving up, but that you need a break. That maybe this is the best it will get for now. There can be a break thru in the future. Again thank you so much for sharing your life, I really gained insight. You are a great writer.

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