Will There be Cake?

I have Lyme. I’d like to not have it anymore. I also just want cake.

Travel Log-I mean Treatment Update

Well, we’re practically strangers now. It’s been a while, I know. I just logged in and saw I had zero posts in September. Honestly, what happened to me. But it’s 5:51 am on a Sunday morning, I can’t sleep, and it was like the little blog fairies were begging me to blog. Throwing it in my face even… my own slackerness. So for starters…  I’ve hopped on some sort of well wagon and have been zooming to wellness faster than at any point in my treatment so far. But also, this latest cycle I completed last week (Cycle 20, Hey-yo!), has thrown me back into a bit of a tailspin. But more on that later. LET’S READ ALL THE THINGS I DID.

So…. I’m sleeping a lot. Like a lot a lot. And before you consider thinking that’s a bad thing, you must stop. When the wrath of Lyme hit me over two years ago, it sent me into severe sympathetic overdrive. I’m not talking about a lot of anxiety or my cortisol levels were consistently elevated or I had trouble sleeping (I did, and they were, and I did), but I mean l lived life as if I was constantly being injected with an epi-pen, for two years. The physical tortures of which will only be understood by those few (I haven’t met many) who experienced this sort of manifestation of Lyme, to this extent. FullSizeRenderI was born and raised to be a bit of a health freak, love my organic foods, my supplements, my natural means of healing my body and mind of the few various ailments that came my way, and pharmaceuticals and even vaccines were something that I just never wanted. No thanks, flu shot people at Walgreens. No thanks. But by the time Lyme had me reduced to a curled up shell of a human being, rocking on the floor with only base-level automations, the relief I experienced after being sent home from my first J clinic visit with a handful of prescriptions to calm the madness was such utter relief. Like Tom Hanks and the spirit of Wilson being rescued from the island relief. So anyways where was I going with this? …….. OH sleep. Yes. This chica, has finally begun sleeping on her own again! I’m constantly having such a party in my head about it. It hardly seems real. I still take my sleep meds at night, but I tell you what, very infrequent is the day now that I say “I’m too sick to sleep”. I am constantly tired. And for now, after living with my hand on an electric fence for two years (even with the meds), I’m relishing it. My naps are glorious. I believe the come-down from living with such high amounts of adrenaline for so long has beyond exhausted my body. Plus, Dr. J has explained (after the fact, that little stinker) that my treatment, and I’m guessing especially the first year as I did extremely aggressive and prolonged IV treatment, caused a lot of collateral damage. This on top of the damage incurred as various localized toxin exposure to tissues, the brain, and nervous system from dying bacteria had time to fester in important places before I could detox them out. Nerve and brain damage takes a long time to repair ya’ll. Dr. J tells me to SLEEP. Like, sleep for a long time. Hibernate the year out. And so, I sleep. Happily. That was a long paragraph. I’m sorry. Because I have so much more to report still.

Speaking of Dr. J., early September I made the trek to DC to check in with him all by myself. This is the second time now, so we can for sure eliminate the first time as a fluke of isolated wellness. We discussed many things, reviewed my rash pictures together on my phone (the only setting in which that would not be weird, and it was still a bit awkward), determined the Bartonella phase of my treatment protocol has been going well, I’m killing the darn things, and I’m showing tremendous improvements by doing so. I think the Bartonella has had much to do with my previous constant state of severe flight or fight, simply because it has been during the 8-9 months I’ve been on a Bartonella-focused protocol that I’ve come down enough to fall asleep on my own. My previous 3-cycle Mepron challenge (we re-introduced it just to make sure Babesia was still under control) went without any noticeable response, so yay!

However, he seemed concerned enough about other possible protozoan infections (Protomyxzoa, Toxoplasmosis, etc.) enough to put me back on Daraprim. And if you keep up on your medical news, you are probably aware of the Daraprim scandal. Luckily, I had enough left over from my stint on it last year for two more cycles, so… you know… we didn’t have to take out a second mortgage to buy them. However… if greedy little hedge fund  boy doesn’t lower the price soon, I am in trouble. I reacted strongly to my first cycle back on the drug. I need this drug! And in finding you a link on Toxoplasmosis (T. Gondii), I realized that the herx reactions I experienced back on Daraprim are very similar to symptoms of an acute infection or latent infection in immune-compromised peeps: “People with weakened immune systems are likely to experience headache, confusion, poor coordination, seizures, lung problems that may resemble tuberculosis… or blurred vision caused by severe inflammation of the retina (ocular toxoplasmosis”. I had very distinct pains in my head, I couldn’t speak actual words in my sentences to save my life at times, I walked into door frames, walls, stumbled on stairs, walked drunk at times, experienced a return of jerking, tics, spasms, and other such involuntary movements that can be labeled as seizure activity, and at times, intense and relentless pain in my eyeballs. Oh, also nausea, because Tara can’t seem to be Tara on a treatment cycle without wanting to toss her cookies (I mean celery or whatever). This was slightly disappointing as I had gotten to the point where I wasn’t reacting much at all to treatment cycles, at least nothing that truly interrupted my well-being. Now we are back to clearing my schedule (of you know, laundry), for the next three cycles I am set to take Daraprim. And let’s all cross our fingers the price of Daraprim is lowered so I don’t have to forgo wellness because taking out a second mortgage for 20 pills is just asinine. Gosh this is getting long. I fully expect you to simply skim this post.

After DC, this Lyme girl surpassed all of our expectations and drove by herself 7 hours across the barren Nevada desert, marked only by sagebrush and gas stations with slot machines, to a clinic where her Lyme soul sister (as mentioned in this post) had traveled from France to undergo treatment. I got to meet my Sonya! I was able to pull it together during my own treatment cycle and go help her with her last two weeks of treatment there before she left to go back home. We trashed the condo with our hundred bottles of supplements, we consumed an ungodly amount of quinoa, we shared a bed at the clinic, and I learned she has an aficionado for taking pictures of me while sick-sleeping. IMG_4164 unnamed

She has more, but honestly two is enough. We had a blast, and I already miss my amazing sister who displayed her bravery, warrior spirit, and determination to beat her illness while undergoing the grueling treatments. She’s amazing. I’ve always used a positive attitude and laughter to cope with my own illness so it was great to spend time with someone who can indulge in your same mindset with you. Love that beautiful french girl!

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I also met other amazing fighters at that clinic… and if I may be so serious, if any of ya’ll are reading, you’re awesome. I’m so glad I got to meet you and briefly be inspired by all of your stories and selfless attitudes. It was like watching the sick minister to the sick. Unfortunately, yes, we are all sick. But there is something special that develops in all of us through our prolonged illness. Being surrounded by people who cared beyond the sometimes shallow or hollow things the society of the healthies get wrapped up in was like being in a special sort of heaven. You all saw past exteriors and had compassion and empathy not usually found in the general public. I believe heaven will be full of people like you guys.

Other notable mentions… um, I climbed a mountain. Well, like.. a small one. IMG_3740Okay I went on a hike that had a moderate elevation but culminated nowhere near the top of the mountain. But let’s not diminish my accomplishment. I felt like I was going to give up the ghost a quarter of the way up. But I did it, and I got to survey the Salt Lake valley and point to the bench where my house is and bask for a moment in the small step of victory I attained in my goals to get back to my prior, athletic self.

I also cut my hair. That is a whole story in itself, but short version is simply that I made an appointment with a woman named Kennedy who turned out to be a 6’4” transvestite in a tube top and a wig who chopped off far more than I was emotionally prepared to part with, and then dyed it a color I was equally unprepared to accept. I could have ran the minute he pulled out scissors and sat in front of me to survey my hair with his legs splayed in dangerously short cut-off jeans… but I was too terrified to move. IMG_4140So… it happened. A week later I had it “fixed”. So… I’m a bit blonde now. It is still an adjustment, but I will own it. Ignore whatever I am doing with my mouth in that picture. I don’t know how to behave in selfies.

I also started drinking raw milk. If you guys haven’t jumped on that bandwagon and your state or general area you live allows raw, unpasteurized and unhomogenized milk to be sold, get on that. I mean… if you want. I was never in to dairy, I haven’t ingested milk in well over five years and especially since getting sick. The only dairy I consumed was greek yogurt and Kerry Gold butter (tell me you can’t eat that butter just by itself, TELL ME). Dairy and I just didn’t get along, and quite frankly, I looked down on dairy a bit if I am being honest. I was kind of a snob about it, if we want to break it down even further. But knowing raw milk to have anti-inflammatory properties, billions of beneficial bacteria, all the live enzymes and little friends milk was intended to have, and plenty of good fats and nutrients, I decided I would lay aside some of my snobbery and begin drinking a cup a day. I’m now obsessed. No stomach aches. No issues. Feels good. Go raw.

Finally, (I know right? Finally) I had it within me to wake up early and drive two hours to the Bonneville Salt Flats in Utah to catch the sunrise and have fun with a little photography. The artist in me is trying to come out again. You’ve no doubt seen these flats in many a car commercial and they are almost always dry. But recent rains gave us a rare opportunity for extraordinary beauty. My brother and I spent the better part of the morning basking in the early morning rays and soaking up minerals by wading in miles of a 4 inch-deep epsom salt bath that puts all packaged salt baths to shame. I’m sorry, I’m kind of being a bit snobby about this too. You get a little wellness back in a girl and she gets her sass back with it. Anyways, I leave you with some stunning nature. Because in spite of all the medical advances that have gotten me to where I am today, nothing feeds and heals the soul like being surrounded by nothing else but creation.

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Bless your heart for reading all of this. It’s now 8 am and I need to go plan my nap for the day. Peace out.

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15 comments on “Travel Log-I mean Treatment Update

  1. Travis Green
    October 24, 2015

    I have enjoyed your videos and updates. I was diagnosed with lyme the day you got your picc line out. I have sense got hope from your posts. I’ve been through getting my gut right, parasite treatment(a few months), and now I’m pulsing antibiotics for lyme. I’ve been pulsing for 3 cycles(2 weeks on and 1 week off) now. I’m seeing a clinic in Raleigh, NC but thought about going to DC. I have a ways to go but have noticed a difference toward the good. When I was diagnosed, I didn’t believe them because I was going to the gym 6 days a week. I went from 285lbs to 190 lbs in less than a year by diet and exercise. I look forward to your future updates. Travis

    Liked by 1 person

    • tarathackeray
      October 24, 2015

      I hear ya. It’s a tough, long drawn process with lots of stages. May your journey keep taking you to a healthier you!

      Like

  2. GMD
    October 11, 2015

    I can never give stars to comments other than Tara. I have tried signing on to wordpress.com,, have a password, account and so on. Wonder what the problem is? Anyone have an answer.

    Like

    • tarathackeray
      October 11, 2015

      It’s a feature in the blog platform. Most don’t enable rating capabilities. Nothing you are doing wrong πŸ™‚

      Like

  3. Joy Cooper
    October 11, 2015

    I am so pleased to hear of the about your journey on the wellness wagon and pray it continues until that wagon carries you always.. I look forward to the time you write you’re writing and it occurs to you, at the END of your missive, that you have not thought to mention, Lyme and it cohorts at all.
    Or perhaps the day when we realize we’ve not heard from you, because you are so very strong and busy, you haven’ t had time to write. – Speaking for myself, I would be conflicted, happy you’re well and missing your words.
    Until that day I applaud your resilience and wish you God Speed.
    And by the way, no worries about the lows that may come.
    Lyme HATES to lose “one” especially an articulate and passionate “one” such as yourself. One that is bound and determined to take others with her.
    Pay no mind. She’s a harsh taskmaster when she’s strong, and very well versed in what what discourages her victims when she’s weakening.

    Liked by 1 person

    • tarathackeray
      October 11, 2015

      Beautiful comment. Thank you so much. You’ve always been a wonderful support to me though I know you only through comments πŸ’š

      Like

  4. Gorgeous photos, you’re a great writer, holy. Awesome to hear you’re feeling a bit better, although I know ‘feeling better’ can still mean you feel like death, but it’s good all the same. Let’s go beat up that guy who raised the prices. Our lymie fists could take him.

    Liked by 1 person

    • tarathackeray
      October 11, 2015

      Love this. Thanks 😜πŸ’ͺ🏼πŸ’ͺ🏼

      Like

  5. GMD
    October 11, 2015

    So glad you seem to still be getting better. I can’t drink cows milk anymore. Can’t eat a lot of things, no beef. Tons of allergies, and short list of things I can eat. My problem is not being able to afford treatment, since 2009. That last stupid LLMD I had could not stand it that I was doing well, so called me crazy and took away my treatment. I will probably never get over that. Anyway, I watched 33 videos from the dental seminar. https://willtherebecake.org/2015/10/11/travel-log-i-mean-treatment-update/ DO NOT neglect the oral connection. I think if I had known this information I would be well now. I even bought the videos. If you know a Lymie who has lost job, lost regained health, and what that does to a now non-existent budget, you will begin to understand how important this summit was to me. I paid $127, now $147. I will get a 3-D x-ray next Friday. I am hoping, hoping, hoping to find a way out. When I was first so very Lyme sick, along with all the weird (so many of them) severe symptoms, was the metallic-tasting mouth. No doctor, dentist, even LLMD, once I found one, would listen to this symptom. While on my 4-5 years treatment, that symptom went away, only to return with my treatment jerked. If you have any amalgam fillings, or root canals, you are in BIG trouble. I wonder if Dr. J. warns of this. I wish I had been warned. Sorry this comment is a helter shelter. I will blame it on my Lyme brain. Tara, I will pray that you continue to recover to full health not even needing treatment. Don’t forget that oral connection. I would be dead now if I had not had my 4-5 years treatment. I really wish you well. A video of amalgam/mercury poisoning as a warning. http://www.mercurypoisoned.com/marie.html Go down the page a little and see Marie’s testimony before the FDA. We live in an evil world, with our own country at the top. See the US bombing of Doctors Without Boarders Hospital http://www.wsj.com/articles/airstrike-kills-doctors-without-borders-staff-in-afghanistan-1443851465

    Like

    • tarathackeray
      October 11, 2015

      Thanks, I am definitely getting silver fillings out. Dr. J wants me to wait until treatment is completed, and I agree. Not ready to potentially stir anything up. Thanks again! Wishing you well, as always.

      Like

      • GMD
        October 11, 2015

        i was kind of forced to wait until about 5 years treatment was jerked before I was really aware of the oral connection. During my treatment, the oral problems went away so i did not know they were lurking. I guess if you can continue to see Dr. J (he is the best), he knows what he is doing.I only have my experience, but Dr. J has seen many, many Lyme patients, and seen them recover. I do so wish you continued improvement till it is all gone.Love your blogs. Nothing makes another Lyme patient happier than to see someone beat this weird (it is weird, I still can’t believe what it does.) cruel monster. I wonder if the medical establishment will pay any attention to your cure and others Dr. J oversees who become cured. I learned so much from the dental summit, a lot of mistakes I made. Many of the good dentists (biological, those who treat Lyme patients) will tell you to not get your teeth professionally cleaned until the pathogens in gums and bone are treated and gone. I had deep cleanings thinking I was doing the right thing, and the infection always got worse; one of the mistakes I unknowingly made. I think you will continue to blog when you recover because you are such a natural writer, and will never forget this journey and others who are also forced through it. I do not think we will lose track of you. God continue to bless.

        Like

  6. Molly Hunt
    October 11, 2015

    Yikes, I have that sympathetic overdrive too. Haven’t slept… literally… in more than 10 years. Ummm… would you be willing to say who your doc is? I’m looking for a new one.

    Like

    • tarathackeray
      October 11, 2015

      Absolutely. Message me through the contact me tab and we can talk!

      Like

  7. Robin πŸ’– Rosenzweig aka mama
    October 11, 2015

    Tara, I am in tears! Your not suppose to make me cry. You touch my heart with your writing. You have a way with words. Your attention to detail gets me all wrapped up into your story that I find myself having to read your entire blog. Thank you for sharing your heart! By the way, where is my picture of you in your new pajamas. :). Miss you.πŸ’–. I am so glad your feeling better. Much love always, Robin.

    Liked by 1 person

    • tarathackeray
      October 11, 2015

      This is why I love you! I need a Robin to keep in my pocket for continuous positive affirmations. πŸ˜‹ as soon as my lazy butt unpacks you have a pajama pic coming your way!

      Like

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