Will There be Cake?

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

Treatment Update – Daraprim & Detours

So, the gist of it is. I’ve been doing really well. In fact, these last few months were my best yet. I haven’t been blogging at all. I preferred to be doing other things, to be honest. Things like:

  1. Easily managing 6 hours straight of classes at school a couple times a week (4.0 club holla!).
  2. Going on summer vacations
  3. Home improvement projects with the hubs
  4. In general, just not being in my house all day
  5. Also, NOT needing naps
  6. NOT getting cyclical fevers
  7. NOT feeling pain
  8. NOT being bothered by my heart all the time
  9. NOT reacting to food
  10. NOT fearing neuro instability
  11. The list goes on.

See Exhibit A: Tara Living Life.

 

Sometime in May my doctor removed Daraprim/Pyrimethamine from my protocol, which I had been on along with my antibiotics since last fall. I saw consistent improvement with it after each and every cycle. And this is where things get confusing. Maybe some of you guys can make sense of it. Because it’s just odd to me.

So with the removal of Daraprim, about 6 weeks later, some minor brain fog and air hunger began returning. That’s it. Life went on.

June comes and I decide I’m going to start laying in the morning sun every day for 20 minutes. Vitamin D supplements give me horrible milia on my face (anyone else?! Please! This has been a life long mystery association for me that no one has been able to answer for me *cry*), so I thought I’d give the ole’ natural way a try instead. My vitamin D levels are totally normal, but being an over-achiever perhaps I wanted more. Annnyways, so the first week of sun-bathing was uneventful other than I was starting to get a tan for the first time in years. The second week though, I started noticing weird things. About an hour or two after 20 minutes in the sun I’d get hit with a wave of massive fatigue. Like, get thee to bed right now fatigue. I’d sleep for a bit and then be fine.

But then around evening time, I started flaring with some old symptoms. The longer I maintained my vitamin D ritual the stronger these fatigue-then-flare episodes became. My heart began to beat funny again, more forcefully. My face would flush, I’d feel malaise, tipsy, or drunk. I’d feel super wired like I really needed more Ativan, and I’d get very twitchy and experience some mild myoclonic jerks.  Then it would pass and I’d go to bed like normal. Also, my sweat started smelling like ammonia again no matter how often I showered (gross I know, deal with it). For almost all of June I thought this was because the cessation of Daraprim had allowed some protozoal infection (which I have been convinced this entire time is my biggest issue) to gain a bit of strength again over me. However, at the end of June I stopped my sun ritual to fly to DC for several days for a visit at Dr. J’s clinic and a vacation. Once the sun-bathing stopped, the symptoms stopped. In fact, they didn’t only stop, but I felt better on that vacation than ever before. HUH?

giphy

CAN ANYBODY EXPLAIN THIS BECAUSE PUBMED HAS NOTHING TO TELL ME.

I’m shouting I’m sorry I’m shouting.

Regardless, since my visit at the J clinic was the very first thing I did once I got to DC, not enough time elapsed for me to experience the effects of stopping the whole sun exposure thing so I told them all these things were happening and I was connecting it to the Daraprim removal. And maybe some of it was, I don’t know. Can one ever, with this disease? The PA I saw at the clinic determined to bring all the babesia artillery back into my life and sent me home with a protocol that looked like something I would have been on a year and a half ago.

…And it killed me.

giphy (1)

(actual footage from that week at my home)

After three days in to that protocol, I had to stop one of the babesia meds in order to prevent uncontrollable vomiting. After five days, I was too sick to leave the house, too weak to stand up straight, too nauseous to eat food, too neurologically fragile to be trusted to drive, and feeling so defeated I was despondent. I missed a week and a half of classes (except this soldier of a girl drug herself into one class in the midst of this chaos and took a two-hour test and got an A. I deserve to brag about it).

A few things (this post is so fragmented just bear with me):

  1. Babesia (or any protozoa) is the same cell type as human cells. Eukaryotic to be specific. Bacteria are not. Antibiotics will always do a better job differentiating between your cells and bacteria cells for this reason. Anti-protozoal meds really can’t do their job without exerting their effects on your own cells as well, and this is often why the most effective medications (like quinine and stuff) are really difficult to tolerate. It’s almost a chemo like effect. Knowing this really caused confusion with me about what exactly is die-off and what exactly is just toxic effects.
  2. Pathogen and human cell death produces ammonia as a waste/by-product. Due to genetic mutations, I do not detox ammonia as one normally should. My ammonia levels skyrocketed during this week to the point of ammonia poisoning. A week post-babesia kill week, when I wasn’t returning to my baseline, I took a supplement that binds to ammonia and within two days was back to baseline. Knowing this really caused confusion with me about what was die-off, what was medication toxicity, and what was ammonia poisoning.
  3. Let’s talk immune system. I’m assuming the majority of you understand what cytokines are and inflammatory pathways and how Lyme is so darn symptomatic simply because it provokes inflammatory responses not exactly commensurate to the danger? And that once those responses are “turned on” so to speak, it is really, really, really difficult to turn them off. Like, it will keep going for quite a while even if it’s no longer “seeing” antigens? And even if it recently did calm down, it still remains suuuuper touchy for a while, and the littlest things can set it off again? Ok well if you didn’t know, now you do. The more I research Lyme and physiology, the more I’m convinced the disease is 50% a pathogen problem, 50% an immune system problem. If you would have asked me two years ago to explain what happened to me, I would have been like um, duh guys, it’s a herx. But older and wiser me, the me who has buried myself in a 1.5 inch thick immune system textbook, knows it’s really not that simple. Knowing this really caused confusion with me about what was die-off, what was medication toxicity, what was ammonia poisoning, and what was my immune system just being cray again over a few killed bug parts.

So initially, during Babesia kill week, I called the clinic and was like, “Yo, guys, what is going on please end this madness”. And they were all “We’ve been over this Tara, it’s a herx, keep going thanks and have a nice day”. A week later I wrote the clinic a big long email explaining that I had been improving just fine on Daraprim alone, why did we need to bring back the entire calvary (I was actually really angry and combative and I blame the ammonia poisoning). They wrote back and told me stop everything and go back to the protocol I was on since last fall, the one that I was improving on, and to make sure I see Dr. J personally next time I go back for an appointment (I’ve been seeing PA’s at the clinic this entire year).

WHAT DO I DO.

Mentally, this has been really, really, devastating for me. I mean, they specifically tell me at the beginning of treatment they can never get every last bug. I will always have these critters. My own research and understanding confirm that truth. The goal here is to just get them under control and my immune system back on top, running like it should with organization and specificity – i.e. not over-reacting to the point of symptomatic hell. I wouldn’t have been surprised by a moderate herx back on all of those medications. But the level to which I descended in just five days really took the wind out of my sails. I was really angry at the clinic. I was really angry at the Universe. I felt like for years, I have been this tiger in a cage, poked and prodded and deprived of meat. Someone had finally thrown me a bone, a meaty, delicious bone, and then took it away from me. Ups and downs, setbacks, non-linear progression… that’s the life of Lyme treatment right? I had assumed I was through the worst of it as life and my health and been awful predictable and relatively stable since last winter. And the fact that this happened with no major relapse to warrant it really frustrated me further. I don’t have to tell any of you how much one longs to get their life back. It was utterly devastating for me to have been experiencing life again, only to have it ripped out from under me. I cried for several days straight.

I’m two weeks post that babesia kill week today. I was back in school this past week and able to perform all of my normal obligations. I don’t feel as well as I did earlier this summer though. The immune system “chatter” is still going on. And I still have so many questions. What was the whole sun exposure stuff all about? What on earth was that treatment response all about?

I’m open to suggestions from all of your brains.

giphy (2)

 

P.S. I am going to go and get ahead of the predictable comments by interjecting here and standing up for my doctor. While I do work closely with them on my treatment and protocols, at this point in my recovery we’ve had the leash lengthened quite a bit. It’s part of the process of weaning a patient off of their dependence not just from antibiotics, but also from the “security blanket feel” that the doctor provides you during your treatment. Really, it happens quite naturally. My life increases, my grip on my doctor decreases, and his grip on me decreases, and it’s all healthy and progressive. So a lot of things I’ve just been doing on my own (with their blessing) that previously they did not want me doing when the implications of such were dangerous. Things like adding herbs to my supplements, weaning myself off or decreasing dosages of stabilizing meds, experimenting with detox methods and their resulting flares, etc. Some of you may feel it’s not right that I have so many unanswered questions right now. And perhaps to an extent it’s not. But I’m on the other side of the continent from my doctor, and I just flew out there. I can’t exactly do it again anytime soon. And since I recovered mostly from that treatment cycle, it’s not a super pressing matter that would warrant an impromptu phone appointment. I’m not in any current danger here. The PA I spoke with also had no idea what the sun stuff was all about. This is basically a really long way of me saying I don’t want to hear about how I need to just call my doctor. We’re in touch. We’re seeing how things pan out.

P.P.S. I’ve also been debating how to even mention this totally unrelated thing. But hopefully it comes across the way I intend it to. I did not want to devote an entire post to it and make it a huge deal. Hopefully placing it under a “P.P.S.” will work. I originally started this blog as a place for me to journal my experiences for my own benefit, as a story to give my kids someday, and as a creative outlet for me to write. I never in a million years expected anybody to find it, notice it, or care. Eventually, a few of my early posts were noticed and shared extensively on social media and readership skyrocketed. Suddenly I had to come to terms with the fact that the blog was “out there” now along with pieces of my heart. For the most part, people were extremely supportive and encouraging and I routinely had my inbox flooded with emails telling me to keep writing. I started including posts about the disease to help give people answers I wished I had been able to find online when I was first sick. I posted about whatever I wanted to post about – as is my prerogative and my only first intention. I don’t make money off this blog. This is not something I profit from. In fact, I pay for this domain.

This year however, I’ve gotten more and more negative comments and messages. People picking apart things I’ve done, decisions I’ve made, and treatment I’ve chosen. For the most part I’ve been able to let that roll off my shoulder and accepted it as part of the territory when one publicizes a portion of their life. Alarmingly, though, I’m getting more and more fairly rude demands about what I should post about and what I shouldn’t, including hurtful and unnecessary demeaning of things I chose to share. To those such people, I remind you this is my blog, this was never meant to “please the public”, and I’m not under your employ? I say that as kindly as I can. I’ve always been open to writing on a specific topic when asked of me, in fact I enjoy it. But there’s a difference when people start acting like this is a paid subscription service and they aren’t liking what they are paying for. We all value different things, no need to be insulting or hurtful when something I value is considered nonsense to someone else.

I’m not bulletproof. I’m recovering from a difficult period in my life, I’m struggling with PTSD, I’m doing my best to recover on this up and down roller coaster of a disease and sometimes that includes therapeutic writing for me. In light of these recent events, I may close the currently open door on that for a while. I’m also debating allowing my domain to elapse and revert back to a free wordpress site. If you notice an URL change in August, that will be why. I’m debating privatizing the blog. I’ve debated walking away from it, even. I’m not sure what I will do, but either way, I’m distancing myself from it for a while. At least regarding any topic that is not strictly informational. It would do well for us all to remember there is an emotional fragility that comes with this disease regardless if you are young or old, male or female. Kindness must rule.

Thanks to everyone who has supported me and given me strength through encouraging emails and comments. It’s been an unexpected source of strength for me that I never anticipated when I created the blog. Much love!

Tara

 

 

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47 comments on “Treatment Update – Daraprim & Detours

  1. Pingback: Will I Ever Get Better? A Treatment Update. | Will There be Cake?

  2. Ted Bryan
    October 5, 2016

    Tara, there will always be mean people who are only out there to try to bring g you down, please do not let them get to you, just like we will always have these critters in our bodies, people will find something that you write and disagree with it, and unfortunately their fist reaction is to criticize and hurt feelings, it is some human nature, maybe they were not loved as a child and need attention and do it by criticizing on a web page trying to create turmoil. Please don’t let them ruin the God given gift you have for storytelling or for helping people like me have some hope and even humor in their lives. I love your blog as I have told you before, and you have given me so much that you can’t believe it. You live hundreds of miles away, yet when I read your stories, it’s like you are right next to me and I can feel the sincerity and caring, as well as the suffering, and it’s like your here giving me a hug and letting me know I am not alone and things will be okay. Not one book or blog has ever made me feel this and you have such an amazing gift, it is too precious to let some mean spirited people stop your beautiful writing and information as well as your story. I may have found your writings by mistake but I think God had a lot to do with it and I consider myself blessed to have found you. You are a very special person to me and though we will never meet face to face, please know that you have had a much larger impact on people’s lives than you think. You are truly an Angel and if I could hug you through the computer, I would.

    Liked by 1 person

    • tarathackeray
      October 5, 2016

      I do not deserve this comment! Thank you Ted, that was very gracious of you and touching. I will keep writing, I was just having a moment when writing this post. Thank you again for taking the time to thank me, it means a lot.

      Like

      • Ted Bryan
        October 5, 2016

        Every word is true and comes from my heart, you are gift to all of us and I am so happy that I found you, thank God for people like your husband and my wife who have to live with us and our struggles, they must be very special people,and I thank my wife daily for everything she does.
        P.S. you do deserve those comments😇

        Liked by 1 person

  3. Pingback: Artemisinin Overdose! | Will There be Cake?

  4. Anonymous
    September 23, 2016

    Is getting your blog automatically reminded me of one of my favorite prayers by Mother Teresa.

    People are often unreasonable, illogical and self centered;
    Forgive them anyway.
    If you are kind, people may accuse you of selfish, ulterior motives;
    Be kind anyway.
    If you are successful, you will win some false friends and some true enemies;
    Succeed anyway.
    If you are honest and frank, people may cheat you;
    Be honest and frank anyway.
    What you spend years building, someone could destroy overnight;
    Build anyway.
    If you find serenity and happiness, they may be jealous;
    Be happy anyway.
    The good you do today, people will often forget tomorrow;
    Do good anyway.
    Give the world the best you have, and it may never be enough;
    Give the world the best you’ve got anyway.
    You see, in the final analysis, it is between you and God;
    It was never between you and them anyway.

    I love your blog, it has really helped me. It gives me hope. I feel like Lyme patients will always nit pick your treatment protocol, I see it all the time when I go to these Facebook groups. ” this treatment didn’t work for me so it’s bad for you but this treatment did work for me so it’s good for you and antibiotics are bad for you, you’re killing yourself blah blah blah….” You made it Tara, you are a success story, doesn’t matter how you got there or how long it took you to get there. The important thing is that you’re there and those people with their negative comments completely do not see that, they’re so focused on the negative. I quickly learned (and still struggling with) is that we should not compare ourselves to others we should not compare our progress with another person’s progress. Our reaction to a treatment compared to another person’s reaction to the same treatment may be totally different. I trust God is going to lead me down the correct healing path. I stopped asking people’s opinion on treatments and what worked for them because there is no right answer or magic cure. Anyways much love and hugs do not let these negative people ruin your day.

    Liked by 1 person

    • tarathackeray
      September 23, 2016

      Thank you so much for this comment. I’ve read the Mother Theresa quote before but had forgotten it, and you’ve given me new perspective. Also agree with you on the second half too. Thanks again for inspiring me 🙂

      Like

  5. ben blue
    September 22, 2016

    First …however green jello people may get you do have a gift for the vernacular and are providing a great service please keep it up..
    on the sun ..uv is germicidal..i have tried uvb and its tiring herx ..uvlrx is where they use alight in the vein via a fiber optic …i am trying to build home unit to use under tounge ….also of couse the abx make light sensative …i took bactrim light has been strange since …course doxy mino etc but sulfas too.. nurse at alt place said that someone that tryed uvb after anx had a spider vein reactioj to light so there may a secondary porphyia thing going on http://www.cpnhelp.org has a pub on it …just an idea its a warning on most of our meds …i want some daraprim as i was just dx with toxo but it may be proto1953..have you tried alinia or ivermectin yet ?

    Liked by 1 person

    • tarathackeray
      September 22, 2016

      Thanks and no I haven’t tried either of those two meds. I hear a lot find it effective though!

      Like

  6. botic
    August 8, 2016

    sun exposure will bring out toxins from your cells and cause herxes. you may have to detox more before you can safely gointo the sun again with no reactions.

    Liked by 1 person

  7. Moira
    August 3, 2016

    Hi Tara
    don’t give up your blog. You show great insight, intelligence, humour and courage in what you share about your lyme journey. Keep going!
    If I had a site it would be called will there be wine!

    Liked by 1 person

  8. LymieGirl
    July 29, 2016

    Hi Tara, first, I want to tell you how saddened I am that you have received such negative and inappropriate feedback from readers. I have never felt any of those things reading your wonderful blog. You have a God given talent for making others feel better about this terrible journey we never signed up to go through.

    I don’t feel alone when reading your blog. I have laughed and cried at all hours – especially when I can’t sleep. It was like I had a friend cheering me on. Best of all, you’re using your spiritual gift to serve the Lord by loving and helping others. Please, please, please don’t give up. Keep going. I’m sure that there are many others out there who feel the same.

    As for the sun, I agree that it could be a die off reaction. I know that the heat does it to me. Summer is bru-tall. I have read many others say the same about sun exposure. I wish I had a PubMed cite for you. 🙂

    God Bless. Keep up the good fight. You’re doing lots of good!

    Liked by 1 person

    • tarathackeray
      July 31, 2016

      Thanks so much I appreciated your comment 💚 (p.s. Summer = brutal is an understatement… Especially this summer!)

      Like

      • LymieGirl
        August 2, 2016

        Hang in there Tara! I hope you feel better soon. I will keep you in my prayers. 💚💞💚🙏💚💕🙏

        Like

    • Lymie Girl
      August 19, 2016

      Check this out. Vitamin D boosts your immune system, which will lead to die off. Sun exposure was used to treat Tuberculosis prior to antibiotics.

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166406/

      Liked by 1 person

  9. gwupara
    July 25, 2016

    I’ve had Lyme for 21 years and only recently diagnosed, for the first time ever, a little over six weeks ago. I was bit in 1995, saw the tick, took one week of Doxycycline, misdiagnosed for years, etc.
    Like we all know, Lyme shows itself in a huge variety of ways for everyone. Fortunately, for whatever reason, the majority of my debilitating symptoms only came in waves over the past 21 years. I call them “spells”.

    I have a western medicine background, but I chose what is known here in the U.S as “alternative therapy”. Now and again I read the blogs of four or five others, including you, that have Lyme. All of you chose the same type of LLD that follows a similar treatment regimen – one of them changing to alternative therapy after trying “typical” lyme-treatment therapy. By typical, I am referring to I.V./oral antibiotics, etc. I want to be clear that I am NOT berating you or anyone else for the treatment they chose. I do want to let it be known I am one of many Lyme patients that chose to go the alternative route. While it’s too soon, in my case, to say “successful” just yet, my LLND has several Lyme success patients.

    He does not advertise. His practice is based on former patient referrals. I had a very hard time finding him. Actually, I did not find him. A Lyme patient that lives in the midwest said he “has heard good things about this clinic”. So I looked up what little information I was given and here I am.

    Again, I say “alternative”, but in Germany, the treatment I am receiving is standard of care for Lyme disease. It is so heart-wrenching to see you and others suffer for so long while receiving treatment – still receiving treatment, for years. I am well aware that there is no magic bullet for Lyme,but there is another, less painful, less drawn-out alternative. My ND has success with Lyme patient’s of varying degrees – from somewhat healthy-looking patients to those that were on the brink of death. These Lyme patients have video testimonials on his website. I dug around the internet to find a few of them to see they are STILL doing extremely well – well after their video testimonials were made. I made my decision to go to this treatment center solely based on those patient testimonials. And I am so thrilled that I did. I am currently on six oral supplements and get i.v. treatments twice a week. (They are not antibiotic i.v. treatments, btw.) I had my eighth i.v. treatment today and it’s worth noting I noticed improvement with how I felt after treatment five or six. I do not herx and my only side effect, thus far, is extreme sleepiness (not exhaustion) and getting tired easily. But I had those symptoms 21 years before treatment started. The difference now is that my sleep and rest are actually restorative and restful.

    I just want you and everyone else to know there is an alternative that works. I plan to do a blog, eventually, to document my personal Lyme journey.

    I chose not to put my LLND name, website or info here, as I am not sure it would be welcome on your blog. If you or anyone wants it, I will be thrilled to share it.

    Thank you for sharing your journey.

    Like

    • tarathackeray
      July 25, 2016

      Thanks for sharing yours!

      Like

    • Lemons 'n Lyme
      July 26, 2016

      I’d love to talk with you more about the treatments you are doing and the doctor you see! I’ve been treating Lyme for 4 years and currently am the sickest I’ve ever been. Although I know it’s a complicated process, I’m constantly looking for answers and new treatments and it’s especially encouraging to hear from people who feel they’ve had success. You can email me at lemonsnlyme@outlook.com. Thank you and I’m so happy to hear your treatment is working for you.

      Liked by 1 person

    • Maria
      August 1, 2016

      I am so sorry to hear you were attacked. Your blog is a great resource for me and I’m sure for others as well. You have done the lyme community a big service in sharing your story and spreading awareness. Everyone needs to find their own treatment plans and nobody has the right to criticize you for choosing your path. Wish you much strength and a hopefully your health continues to improve.

      @ gwupara: I would love to hear from you and your LLMD. I am struggling to find agood one at the moment. Thanks : )

      Like

      • gwupara
        August 1, 2016

        my treatment is nothing like this blog owner’s (tara) treatment, maria.
        i’ve only used WordPress three times (lol), so i am not sure if private messaging is possible here. if not, give me a way to contact you and i will give my info there, as not to disrupt tara’s blog with my lld and treatment info.

        Like

    • logmoss82
      August 24, 2016

      Just a quick fyi point for gwupara. The ‘standard of care’ for lyme in Germany is exactly the same as in the US. I have spent a lot of time reading German language lyme sites in google translate as I too was led to believe that Germany is a magical panacea of lyme treatment where they ‘get’ the disease and treat people with more effective ‘non fda’ cures that we don’t have here, but it turns out germans are just as clueless as we are and struggle in the exact same ways we do trying to get docs to take us seriously and believe we still have a disease after 4 weeks of doxy. see for yourself

      https://translate.google.com/translate?hl=en&sl=de&tl=en&u=http%3A%2F%2Fforum.onlyme-aktion.org%2Fforumdisplay.php%3Ffid%3D11%26page%3D15

      you seem like you may be talking about ozone ivs?

      also if your doc is posting video testamonials online then he is indeed advertising. not trying to be rude, just sayin. But hey if your having success go for it.

      Liked by 1 person

    • Deb Giandonato
      September 10, 2016

      Hi, would you share with me your lyme specialist, I have a 13 year old son that was diagnosed almost 2 years ago with an advanced stage of lyme disease. He has loss of small motor skills, executive functioning skills, memory loss, verbal skills and his writing skills. I would appreciate any information you could forward that could lead to successful treatment for him.

      Thanks so much.

      Like

      • tarathackeray
        September 10, 2016

        Deb, so sorry to hear. I see Dr. Joseph Jemsek.

        Like

  10. Chris Smallridge
    July 25, 2016

    Thank you for your honesty. I am a more recent reader, and didn’t follow your, but finding it now has been uplifting (and comforting in that commiserating sort of way). I appreciate your ability to put some of these confusing, though common, thoughts and feelings into words.

    I’ve been sick for over 10 years, and the first 5 were the dance you’ve been describing so well, but I gave up (easy to do when you’ve exhausted every resource, financial and otherwise), and simply try to live clean and healthy and trudge through it. I’m not convinced that is best, and it wasn’t by design, somehow it’s just where I have somehow ended up.

    Tl;dr: Finding your blog has reminded me I can fight back. Thank you for that, and best wishes whichever path you choose!

    Liked by 1 person

  11. Lemons 'n Lyme
    July 24, 2016

    Like a few others have commented here, i too do not handle being in direct sunlight well, even though I can handle heat from other sources. I have no idea why, there has too e something in the suns rays. I love the heat and much prefer to be sweating then freezing but when I try and lay in the sun it feels like it sucks everything out of me and exacerbates my Lyme symptoms. I can handle being outside NOT in direct sunlight and later in the day (after 3 or 4 pm when the sun isn’t as strong). So I would say just listen to your body. There are so many things that make no sense to me with Lyme (like zucchini is supposed to be super easy to digest and a good food but if I eat it, I end up in excruciating pain and want to vomit up my intestines) so I’ve just had to adjust and do what my body asks.

    PS- I’ve absolutely loved your blog and I’m so sorry you’ve had to deal with rude comments. I hope you continue to write, it’s so nice to read others stories and know I’m not alone (even though I wish no one else had to deal with this!). ❤

    Liked by 1 person

  12. Lyme&Co
    July 24, 2016

    I can really relate to this post, especially the part where you feel like you made some headway and then “Bam!” it feels as if you are sent back to square one. Its my belief that one of the lessons of Lyme is to learning to trust yourself. You are an intelligent educated woman, both in school, and in Lyme treatment. You know what’s best for your body and how it works better than any other person on the planet. At this stage in the game, you get to decide what works and what doesn’t work. I think you bring up a very major point regarding Lyme disease treatment. All sickness is not die-off. Sometimes it’s something else, like a bad reaction to the medication given. Thank you for illustrating this important aspect of treatment.

    Liked by 1 person

  13. Lisa
    July 23, 2016

    Tara, I’m stunned you got such negativity from readers. Ugh. Please don’t stop writing. No pressure, but you’re kinda my long distance Lyme warrior and your journey, all ups and downs, give me hope.

    About the sunbathing, this feels too obvious , but I know hot water or saunas can increase die off. Maybe lying under the sun did that? I’m guessing you considered that.

    Take care of you first and foremost, but don’t let ignorant bafoons take your joy away.

    With much love…

    Liked by 1 person

  14. Anna
    July 23, 2016

    Tara,
    I am SO thankful for you and your blog. It is you and your willingness to share that led me to JSC. You answered every question I had and were so kind and helpful during an extremely difficult time for me. I would be devastated if you closed your blog, I frequently come here to see if you have posted a new post. When I am struggling during my journey, I come back and read your posts. The ones where you talk about how you overcame the IV therapy. I love reading how honest you are and am so thankful that I found your blog. ❤︎

    Liked by 1 person

  15. communikatesite
    July 23, 2016

    Hi Tara, thanks so much for your wonderful blog. It helps me to understand such a lot more about this shiteful disease. I’m bringing my daughter from Australia to see Dr J next month. Wish us luck – this is a big gamble for us but we are between that rock and the the other place that is very hard. I love your work. Please keep going and I hope that your symptoms start to settle again. The sunbathing thing is strange but perhaps, as others say, Babs is reacting. You are so clever and courageous and provide hope for us. It distresses me to think that others would have the gall to post anything negative about what you offer out of the goodness of your heart. Bless you

    Liked by 1 person

    • tarathackeray
      July 23, 2016

      Thank you! I think you guys will love Dr. J. He’s wonderful. And thank you for your encouragement, I so appreciate it.

      Like

  16. Heather
    July 23, 2016

    Hi Tara-
    Glad to hear you’re on the upswing! I think sometimes the higher you go, the harder it is to fall.
    The heat and sun really bother me too. It’s like the 7th circle of hell hot here, and it’s making me b*tchy…… I mean
    herxy……ok probably both. Sometimes I wonder if my heart palpitations are little messages from God telling me to lose the attitude or else. 🤔
    I have pesky milia on my face too. I’ll have to investigate this vitamin d shenanigans you speak off. Anyway, I got this Vasanti “Brighten Up” exfoliating cleanser in my Birchbox this month and it really helps!! It’s affordable and gentle enough to use everyday. I use it every morning before I put on my make up to prevent the dreaded cake face. 😊

    Take care!
    Heather

    Like

    • tarathackeray
      July 23, 2016

      Yay another milia sufferer! I mean, not really yay but still yay. I’ve tried every exfoliating toner/acid/treatment. Prescription and non. The only thing that works is stopping Vit D intake. Bizzaro. Anyways, thanks for the tip I’ll still look into it. 🙂

      Like

  17. K.Erin
    July 23, 2016

    Hey there Tara… love your blog, I’m a Lymie too and struggling with my own set of this-makes-no-sense sh*t. So I feel ya, sister. Feeling super good and then super bad again, it’s… ugh. The worst. I have some incredibly tricky, nobody whatsoever can figure them out, symptoms that exist… I’m getting to that point of submission, that I may legitimately have to just accept this as my lot in life. It would mean not pursuing answers anymore… but that’s not my personality. Like you, I’m hard-wired not to give up even when I mentally am ready to just freaking quit. I’m in a weird mental space. BUT this isn’t about me, this is about you!

    But the thing about sun bathing, there was actually an article circulating earlier this week that I saw that talks about this very thing, the whole heat exposure. Essentially, it said that when we herx, the body can only get rid of so much waste/by-product/whatever, so some comes out and some gets stored inside of us. So it’s just there, hanging out, until we heat ourselves up and it comes out again… and we feel all herxy again. It would explain why the symptoms are short-lived, I think. Don’t know if that helps in any way but… maybe a nugget of info that makes something else clear for you? Perhaps.

    Liked by 1 person

    • tarathackeray
      July 23, 2016

      That would seem to explain why symptoms were short lived. Do you know where I can find that article? Thanks for sharing!

      And thanks for the encouragement. Part of me has definitely accepted that in some way I may always have weird things here and there the rest of my life. I don’t know how realistic 100% is, especially sustained throughout life when so many things can weaken your immune system and leave you vulnerable again. But like you said, I also need to know why! It’s the biological detective in me 🙂 thanks again!

      Like

      • K.Erin
        July 23, 2016

        Here it is. It seems so… I don’t know… elementary? Obvious? Too simple? But at the same time, it makes perfect sense. I think I have to remind myself that sometimes the answers ARE simple, and that I am often looking for a more complicated answer when I don’t need to. Maybe it IS this simple? And if so, it would suggest to me that we have to keep detoxing to get this crap out of ourselves in order to fully allow our immune systems to do what they need to do.

        http://www.tiredoflyme.com/feeling-worse-in-the-heat-with-chronic-lyme-disease.html

        Like

      • tarathackeray
        July 23, 2016

        Thank you! And I ultimately think I have to agree with you. 🙂

        Like

      • tarathackeray
        July 23, 2016

        What is still a puzzle for me though is I was tolerating showers, exercise, and non-sun heat (like riding in a hot car or sweating in a hot and crowded classroom). So the thing that confuses me is that it’s the actual sun exposure that was doing something….

        Liked by 1 person

      • K.Erin
        July 23, 2016

        (I’m replying to your last comment, but it’s not offering me the ability to reply directly from that one, so this may now be out of order!)

        In regards to why you don’t get these detox effects from being in a hot classroom or car: I think other heat, where you’re not directly in the sun’s rays, doesn’t cause the same effect because it doesn’t induce some of those bio-chemical reactions in the body. Although it could potentially have to do with Vitamin D, I’m more inclined to think it has to do with the sun rays penetrating the skin and heating up the fat (containing toxins, presumably) in a much more effective way simply because it’s so powerful and direct. I think we could liken it to putting food in the oven… cook food at 425 for a long time and it’ll slowly heat through. Put food in the oven under the broiler and you’ll burn the crap out if in a few short minutes.

        I have the same thing… I spent two straight days outside in the yard last weekend in very hot & humid but cloudy conditions, and I felt amazing. No lingering effects, I just felt GOOD. (So rare.) But if I were to go into my Near Infrared Sauna, which has powerful red light that penetrates the skin, after even just 20 minutes of sitting, I start a detox cascade and I get pain in weird spots in my body — specifically my hip bones are painful to the touch (and they’ve never been painful before, ever). So I think that lends to our little theory here. It’s not the heat, it’s the penetration of the rays into the body. Ok, that’s it, call the Journal of Science, I think we’ve got this thing sorted out. 😉

        -Kim

        Liked by 1 person

      • tarathackeray
        July 23, 2016

        Haha journal of science will be contacted. I think you’re right, btw. Something about those rays infusing cells with its cosmic radiation and making them bounce around full of energy. Something like that. 🙂

        Like

  18. marian
    July 23, 2016

    Tara i also react strongly to the sun. My body shuts down when i sit in the sun. I also do not know what it is.
    Also it came to my mind that when i did the hyperthermia treatment in Germany last year my babesia symptoms flared. I then found out thst the heat was not good for the babesia. Not sure why but i read it in one of my doctors papers.
    You have gotten so far in your journey and don’t let this little setback bring you down.
    You’ve been inspirational to me and I’m sure to many others.

    Liked by 1 person

    • tarathackeray
      July 23, 2016

      Thank you. I will look into that babesia hyperthermia connection. I kept feeling like I was almost herxing 8 or so hours after sun exposure. This would make sense. Thanks for sharing!

      Like

  19. Skip
    July 23, 2016

    So glad you are feeling better. Your study and posts give hope. After over 20 years of symptoms and a diagnosis 2 years ago with treatment it gives hope people like me can always use. Just like you said about your survey, it wasn’t scientific but it was helpful. Not sure why folks post rude or mean comments. If you don’t like it then don’t read it, move on. Or as mom said, if you don’t have anything nice to say don’t say anything at all. Like your posts but for your sake I hope they are less because you are enjoying life more. I told my P.A. and doctor I was hoping “to be done with them” after 2 years but we’ll get there. Keep living the good life!!

    Liked by 1 person

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