Feb 2014 health update

Oh, hello! Now that you’re here I suppose I should tell you about how the Lyme stuff is going. It’s certainly been a minute since I posted a health update, and there’s a lot of update to get through, so hold onto your dendrites and let’s begin the overshare, shall we?

Test results
Recent test results indicate a few interesting things. For instance, I have Lyme Disease, you guys! No brainer, right? Well,┬áit was actually pretty surprising to me that I tested positive after almost a decade of having (and treating) it. It was probably pure wishful thinking, but I half believed that I’d already gotten rid of most of the bacteria and was just dealing with aftermath. Nope. I still have a lot of fighting to do.

Also, it turns out I do not have a genetic mutation that makes my liver terrible at detoxifying my body, and my immune system is only about 25% suppressed right now, which is a huge improvement over the past several years. Overall, my blood looks about as optimistic as can be expected right now, and I’m very pleased about this.

Lyme Treatment
I’ve begun a new treatment regimen with a doctor who practices Integrated Medicine on the other side of the state. At the outset, this requires office visits for treatments every 1-2 weeks. The treatments are designed to kill a ton of Lyme bacteria, parasites, and other pathogens all at once, and they take a heavy toll on my energy reserves and functionality in the short-term, but Lyme Disease is a game where you either become comfortable with strategic risk and sacrifice or you languish even unto death.

For me, this was never going to be a tough choice. I’m a scrapper from way back.

Diet
One of my new doctor’s theories about Lyme is that it kind of collaborates with a little-known parasite called protomyxzoa, and you have to treat both together. Because protomyxzoa seems to thrive on dietary fat, I’m eating very little of it these days. This is a 180-degree shift from my previous (and fairly standard) Lyme diet, which was grain-free, low-carb, and completely unrestricted in most fats. For the first time in years, I’m eating gluten-free cereal, toast, and pasta. It is a revelation, and despite the increased pain, decreased mobility, and general difficulty from treatments, my energy levels are better than they’ve been in a long time. Plus, I get to eat stevia-sweetened, dairy-free tapioca pudding while gleefully shouting “Doctor’s orders!”

Symptoms
So right now, the symtoms I’m dealing with on a daily basis are pretty overwhelming. Joint pain and headaches are aggressive, seizures are happening more frequently, inflammation is pronounced, especially all down my spine, cognitive abilities have all taken a hit, and my neuropsychiatric symptoms (the worst of which are anxiety and depression) are keeping me very busy as I try to keep calm and positive, and often fail.

I don’t like to make a big deal about my day-to-day struggles, but lately they interfere entirely with all my efforts to simulate any definition of normal. Socializing is incredibly hard right now. Making it to my part time job has become increasingly impractical. There are a lot of people and activities and places and things that I miss so much right now, and I feel like I’m letting myself and others down, but the ability to interact with them in an appropriate way is desperately elusive. I’m just too sick. I hope that the treatments, however hard they are now, reverse all this in the long run. I believe they will. In the meantime, if I’m acting like an absolute lump around you, or can’t even manage to be around you at all, it’s not you. It’s not even me. It’s my physiological pathology.

Fundraising
The testing, the doctor visits, and the treatments mentioned above would all be inaccessible to me without the donations of my incredible friends and family, and even a few generous strangers. I can’t describe how grateful I am every time I am able to pay for a health expenditure without worrying how I’ll also be able to feed myself or pay rent. I haven’t had that type of peace in a long time, and it was purchased for me entirely by people who care about me, for one reason or another. I can’t think of many gestures that have been so powerful, or meant as much to me. If you donated to my Lyme fund, this is the gift you gave me. Thank you.

A few people have recently asked if I’m still taking donations, and I absolutely am. My medical bills are steep right now, and my long-term coordinating doctor has stopped taking Medicare (or any other insurance) this year, so that fact alone will put any extra money to good use. I am being very frugal with my fund so far, and trying to stretch it as far as possible, but I may need to amp up fundraising efforts again later this year. At that point I’ll probably adjust the goal posted on the fundraising site. As ever, donations are cherished, but never expected.

Summary
I’m very, very sick.
I’m trying very, very hard to be less sick.
Too soon to tell yet whether that’s going well or not.
I love you.
I love cereal.
But mostly I love you.

Lyme tip: Cuddling a Pomeranian is always a good palliative care option.

This entry posted in Food, Health, Lyme Disease, Pets. Bookmark the permalink. 

13 Responses to Feb 2014 health update

  1. Jennifer says:

    Thank you so much for updating. I hate that the treatment is so hard, but I’m sure it will be worth it in the end.

  2. Thank you for the update, Carrie!

    We’ll be tough together. We can do this. We will beat Lyme, and we will come out the other side so much stronger than everyone else because of it.

    I love you! <3

  3. Michael Szymczak says:

    I know your mom through the bakery. I admire your fight with something you didn’t cause and for darn sure don’t want. I will be sharing this on my site. A friend of mine Annie Couture also is suffering from Lyme disease. Maybe she’ll correspond with you to share whatever. I’m sure your mom will keep me informed on fundraisers. Keep on keeping on.

    Michael Szymczak (shim~shack)

  4. Susan Vert says:

    Carolyn, I love you too and hate that you are going this. You are so tough I know you will continue to move forward and make progress. Enjoy your cereal and pudding and know that you are in my prayers. Beautiful girl, love you!

  5. I love you, too! You are an inspiration of AWESOME, and I know you will kick Lyme’s ass.

  6. Gerald says:

    Dear Carrie,
    What a battle! ( actually, a siege. )
    Constant prayer and love coming your way XXX

  7. David says:

    Hi,
    Keep trying! Recently I came across BORAX on the EarthClinic.com site. Read it up. Its worth a shot! Lots of info there! Ted from Bangkok has some great posts there! All the best!

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