Diagnosis – Lyme Disease

Image from www.caryinstitute.org

Image from www.caryinstitute.org

‘All delays are dangerous in war.’ ~ John Dryden

There’s a war going on in my body.  In fact it’s been going on for a quarter of a century.  First there came the enemy invasion. There was no loud and obvious display of force. Instead it was an invasion by stealth. A mass of tiny bacteria, regurgitated from the stomach of a tick, entered my body via its bite.  My body fought back, and it’s been fighting ever since, but this is a war where the odds for victory aren’t high, and decrease resoundingly over time.

Amazingly, I recorded a tick bite in my sister’s school diary in August 1984, and actually taped the tick to the page! (Why would I do that?) A short while later I was diagnosed with German Measles, but looking back I am sure my rash was tick related, and anyway I had already had measles, and at the time no one else at home or school became sick. I was sixteen years old; bright, ambitious and high-achieving. Sadly, that was all about to change.

For some reason Simone remembered and dug the book out, all these years later…

TickInDiary5

Oh my goodness what a rough road it’s been since then.

My recent diagnosis after years of chronic illness is end-stage lyme disease with heart and neurological complications. I first received a clinical diagnosis of lyme weeks ago, based on my medical history and symptoms.  But I have come to distrust diagnoses – I’ve had so many, and been so disappointed when I’ve not been able to be healed of these things, or the diagnosis has later proven to be wrong. Then, two days ago, I received lab results that made the diagnosis definitive for me.  I finally have a piece of paper I can hold in my hands, reassuring me this whole thing is most definitely not my imagination.

It’s not a great diagnosis. There is much collateral damage after such a long time with this war raging within me. My results list brain lesions, advanced Hashimoto’s thyroiditis, lyme carditis and dilated cardiomyopathy, a weird undiagnosable multi-drug resistant gut parasite, severe adrenal fatigue, almost zero DHEA or cortisol or other good hormones, tumors on my ovaries, enormous uterine fibroids, lots of deficiencies due to malabsorption issues, and in fact I could go on. It’s a long and very depressing list, and the catalyst for it all is Lyme…

Here’s my brain in 2000. It’s much worse since then. In fact, I stopped getting SPECT scans because they became more and more depressing.  There is nothing quite like watching your brain get hole-y and feeling your cognitive function slide. Luckily I had a genius IQ to start with (seriously – LOL) so I had a little more up my sleeve, or at least that’s what I keep telling myself!

SPECT Scan A

I have fought for a diagnosis for a long time, and I’ve had many. Included in the list have been Chronic Fatigue Syndrome, Ross River Fever, Q fever, multiple chemical sensitivity, ME, Fibromylagia, Post Viral Syndrome, rheumatoid arthritis, lupus and multiple sclerosis (both later recanted), Bell’s Palsy, Guillain Barre, Acquired Brain Injury (I love this one – it sounds like I went down to the shop and just ‘picked one up’…), depression, non-specific auto-immune disorder, mitochondrial disease, endometriosis (but my gynacologist can only ever find gross inflammation, NOT endometriosis affected tisssue), and recently ideopathic dilated cardiomyopathy and congestive heart failure..

I’ve also been told over the years that this is all in my head, and that my condition is psychiatric. That’s done so much damage.  I doubt everything that happens. I blow off the worst of symptoms and take ages to act on new health problems. After complaining of severe chest pain on many occasions to my general practitioner, I was told it was stress related, given a script for ‘something to relax me’ and advised to ‘learn to meditate’. It was recorded in my chart that I was a hypochondriac two days before I was hospitalised with a major heart attack.

I always knew there was something VERY wrong, but it has been so hard to find doctors who would take me seriously, or who could manage me on an ongoing basis.  I’ve seen so many specialists and natural therapists, I’ve spent hundreds of thousands of dollars on my health, and it is still my greatest ongoing expense. I’ve done everything you can possibly imagine in my quest to be healthy, but it’s never worked completely, and I’ve never achieved wellness.

Past life regressions?  Done. Faith healers, reiki masters, and psychic healers? I’ve seen the best. Diet?  I have tried and complied for YEARS with many, including being a raw food vegan, fasting, a macrobiotic vegetarian, an elimination and anti-candida low allergy diet, food combining, paleo, body ecology and a few other weird and wonderful ones.  I even drank my own wee!

Image from www.ukskeptics.com

Image from www.ukskeptics.com

I’ve IV chelated until I whimpered with pain at every session and vowed I would rather die than do one more treatment. I’ve detoxed and sauna’d, had my blood removed from my body and passed through ultraviolet light before being pumped back in again, I’ve done health retreats, hypobaric chambers, hormone therapy, psychology, psychiatry (they said my problem was physical and send me to an infectious diseases specialist), seen a geneticist, cardiologist, immunologist, gynecologist, ear nose and throat specialist, rheumatologist, environmental medicine specialist, and many other wholistic doctors and clinics. I’ve tried EVERY form of natural and complimentary therapy, and most of the multi-level marketing pills, potions and lotions.  I’ve also used vega machines, biofeedback, Hulda Clarke’s zapper machine and held onto electric fences in fits of inspired desperation after reading about farmers who had cured themselves of Ross River Fever doing the same thing…

I still use homeopathy, meditation, acupuncture, chinese and western herbs, nutritional supplements, chi gung, diet, chiropractic and prayer. In fact, I am convinced that my twice-daily meditation and visualisation sessions have saved my life and maintained my ability to function.

Over time I have become very good at managing my condition, and keeping things in a crazy kind of semi-balanced state. But if I’m honest it’s not living. It’s existing.  Existing with good bits and gratitude, yes, but I have been robbed of so much. So many years and opportunities I will never get back.

There is an upside, of course. I have gone deep within. I have done more work on myself than I ever would have, had I not walked this path. When everything else failed, I have always had my psychic ability and my spiritual connection. It is the one thing that allows me to say I wouldn’t trade this if this is the gift I received in exchange. But it’s a gift that isn’t very useful if I’m dead, which is the way I was recently heading.

So, now I have a diagnosis, what next?

One doc says it’s manageable but not fixable, one doc says it’s sort of treatable although he is not hopeful of a positive long-term outcome this late in the game, and one doc says to me I have drugs for the bacteria, and they’ll make you sick, but they might make you well – what do you think, Nicole?

I said ‘Give me drugs. Give me all the drugs. Cos I’m gonna kill all the things!’

kill all the things

In my long war I have used everything else, and it has all helped. But I have never used targeted antibiotics, anitparasitics and anti-microbials. So now I have a fistful of scripts and I shall rattle like a maraca but it’s something. And I am hopeful. Hopeful I can mend my heart and my brain.  Hopeful that my future here is not only a long one, but one with a better quality of life.

I’ll keep you posted. And I may spend a little more time blogging health things and wellness things, in with my usual mix of stuff. Over the past 25 years I’ve learned so much about health that has aided my journey. Perhaps some it will be useful to you too.

If I have one message for you out of all of this, it’s this: Back yourself.  Trust yourself.  We always know deep down, when something isn’t right.  Don’t ever give up looking for answers. Don’t ever give up expecting that you can have a better life.

Much love to you, Nicole ♥ xoxo

Image from www.weheartit.com

Image from www.weheartit.com

Some useful links:

Lyme Disease Association of Australia

Karl McManus Foundation Australia

Lyme Disease Association, Inc United States

The Canadian Lyme Disease Foundation

170 thoughts on “Diagnosis – Lyme Disease

  1. Wow, I’m so sorry to hear this. Having had a 20-year struggle with my own health (dietary issues), I can definitely relate. It sounds like at this point you should be on heavy-duty IV antibiotics, though, not even pills. I would urge you to find someone who really specializes in Lyme and knows how to think outside the box. “Regular” doctors are still pretty clueless about it. Write to someone well-known and plead for their assistance! Oh, and I’m recalling that the author Amy Tan suffered from this condition for years, so you might want to look her up as well. Best of luck to you, sweetie. Hang in there, and do keep us posted! Recovery IS possible!

    • Hi Jennifer, I am lucky to have found a lyme literate doctor here in Australia. I’m not doing IV drugs yet because of my heart, but my doc has put together a great plan for me, and I’ll go IV down the track, so I’m working up to it. Thanks for the Amy Tan heads up too!

      I’m sorry to hear about your dietary problems – I really relate. Wishing you wellness, and sending love, Nicole xx

      • Hi Nicole,
        I’m just starting on a similar road myself. I feel normal reading your blog. Thank you! I hope you continue to find answers and feel well again. Do you have any pointers for finding a good LLMD here in Sydney? Many thanks Vanessa

      • Hey Vanessa, I would seek out some of the Lyme groups on facebook, or try http://www.lymedisease.org.au/ Finding a supportive doctor is so important, but also expect that you will need to learn as much as you can and develop your own strategies for recovery. Happy to help if I can. If you’re on facebook you can send me a private message, or email me at cauldronsandcupcakes.com. Love and hugs, Nicole xx

  2. DEAR NICOLE, MY FRIEND BARBARA HALL, HERE IN EUGENE, OREGON, USA, IS AN HERBALIST AND CURED HERSELF OF LYME DISEASE BY USING TEASEL (CONSIDERED A WEED). SHE JUST BY CHANCE IS COMING OVER TO MY HOUSE IN ABOUT AN HOUR TO PICK UP SOME PLANTING POTS FROM ME. I WILL HAVE HER GET IN TOUCH WITH YOU.
    WISHING YOU ALL THE BEST ON YOUR HEALING JOURNEY!

  3. Bless you, Nicole. I have a friend nearby who was also recently diagnosed with Lyme disease. She has begun treatment and she sounds hopeful. She’s had it for 10 years. I will continue praying for you.

  4. Thanks for the extraordinary richness, rawness, magic and clarity of your writing Nicole. Your last few posts have unexpectedly opened up something in me… to do with vulnerability and expression and wisdom…. I wish you all the love on the next part of your journey, and a long, contented life here! Thanks to your work and writing (and maybe a difficult, indirect thanks to Lyme), for the trail you have blazed for us sensitive types to be in this world! Lots of love to you. Thank you.

    • Thank you, Rebecca – it’s hard to be vulnerable and put myself out there, but I feel I have nothing left to lose and oh so much to gain by sharing what’s been hidden or glossed over for so long.

      In all that has happened, there is so much to be thankful for. Bless xx

  5. There’s something so comforting about having a diagnosis that makes sense. Even if it’s not a very nice diagnosis. So I’m glad that you have that piece of paper, at last. And what you said about trusting yourself, vs ignoring symptoms because you keep being disparaged for reporting them….yes to that. It gets hard, once you have been officially labeled as ‘ dramatic’, or ‘ presenting with symptom magnification’ . There is so much self-doubt. I’m grateful that you found a strong voice on your journey. It helps the rest of us who hear your words.
    (now that you know your diagnosis, consider consulting David Dalton of Delta Gardens in New Hampshire, USA. He has had success with resistant cases of Lyme using flower essences. I’ve seen his results in my own family and colleagues)
    Wishing you continued health!

    • We love flower essences around here! I never discount any of these things in our healing journeys. So many of these gentle remedies have held much power for me on my road towards recovery. And thank you for David’s contact too.
      Blessings and much love, Nicole xx

  6. Thank you! You ave a huge range of everything healing to offer. You have experienced so much and tried so much to become amazing healer! You are amazing! I’m sending big love and many blessings for the Rest of your journey. Look forward to sharing. I just wanted to say, stand in the morning sun, wrap yor arms around yourself, close yes look up and pull all the gold light that comes to you, in you and around you. I can see you and you look Beautiful and golden, glowing. Love Lyn xxx

    • You know Lyn, I don’t think I am amazing. I think I’m just stubborn and willful and hate being told by people to accept my limitations and lie down without a fight. We are all so much stronger than we know, and one of the gifts of challenging times is that we get to learn that about ourselves.
      I did go stand in the morning sun, and it was wonderful, Thank you my friend! {{{HUGS}}} xoxo

  7. Thanks for the extraordinary richness, rawness, magic and clarity of your writing Nicole. Your last few posts have unexpectedly opened up something in me… to do with vulnerability and expression and wisdom…. I wish you all the love on the next part of your journey, and a long, contented life here! Thanks to your work and writing (and maybe a difficult, indirect thanks to Lyme), for the trail you have blazed for us sensitive types to be in this world! Lots of love to you. Thank you.
    PS. How can such a tiny thing wreak such havoc!?!

    • I ask myself that often. How can a tiny thing wreak so much havoc? These bacteria are of a group known as stealth pathogens, and there are many of them. I shudder to think of all the people walking around with misdiagnoses while under their skin similar wars are waged.

  8. Holy moly!! It all kind of makes sense now! Although I’m saddened by the diagnosis, I am happy that you have an answer. You aren’t crazy (well, except for in the best senses of the word)! Go after them bugs, girl!!

  9. Hello Dear Nicole,
    i am happy you got your diagnoses and feels validated about all that has been going on with your life. i am hoping for you to get the best treatment. Your blog is wonderful, i don’t know how did i find you on twitter, but i did.. and for the long time you were absent, sometimes i wondered about what had happened, and imagined you were too busy living your happy Byron Bay life (great memories myself). Have you ever tried Anthroposophic Medicine? I have seen they perform little miracles over the years, and their homeopathic skills seem to me decades advanced in time, and the kindness and dedication the Anthroposophi physicians have as part of the treatment is quite not usual for the traditional physician, I am sure you know what i mean. I got the link for The Australian Anthroposophic Medicine Association >> http://www.aamaanthro.com/
    please do take a look, and if you have, in the past, maybe you could take another now that you got your right diagnose.
    Hope you get better soon,
    Love from Brasil

    Clarissa

    • Thank you for the link, Clarissa, and for your kind words and support. I am always open to ideas and suggestions. I believe that healing is a journey, and that there will never be just one thing, just one solution, just one fix.
      Much love to you from Byron Bay, where miracles happen every day xoxo

  10. Your last piece of advice is something that we all should take heed of. Trust your own instincts and feelings regarding your health.
    I hope you mend well now you know what the issue is.

  11. How awesome is the tick in the diary???!!! Wow. Nic, excuse my language yet again but you FUCKEN ROCK. Kill those muthafuckas. They’ve had their play time, now it’s time for eviction! So much love to you. Thank you for so honestly sharing this.

  12. WOW… I feel so deeply touched by your sharing of this journey…your strength…your vulnerability and your determination to never give up….here’s to dancin’ in the rain in gumboots with our faerie friends & getting old together!

    The WORLD needs you as it certainly would be at a loss without you…sending you love, light and prayers for vibrant good health, and yes Meditation certainly is a major support for physical & mental wellbeing. Good Luck with any ‘leads’ that come your way and know that you will be in my prayers and heart each and every day…XOXO

  13. Nicole, I am so glad that weight has been lifted from you. It will be a fight and herxing is hard. There are many of us out here praying for you. The government needs to recognise this disease so we don’t suffer in silence. xoxo

  14. Wow Nicole. I recently sat in on a meeting with a group of infectious disease physicians in Perth who have formed a group looking at Lyme Disease. You will be most likely turned into a case study! For a long time they refused to believe this even existed in Australia believing it only happened in the USA. So glad you have a diagnosis finally. What a journey for you. So glad you continued to back yourself.,its something I openly encourage with my patients every day. I often say to them ‘only you really know your body’ and if you think there is something not right then you will be right. My thoughts are with you. What incredible courage and strength you have. Xxx take care

    • Thank you, Margot. I’m so glad to hear this is being taken seriously here in Australia. Honestly, it’s been the longest, hardest road for me. But that road taught me courage and strength, so it’s not all bad. {{{HUGS}}} xoxoxo

  15. You have incredible tenacity Nicole, what a journey. I seem to remember you mentioning in a post a while back that you thought your cardiomyopathy was due to a tick bite years ago – how frustrating that no-one thought to investigate this as a possibility years ago. It still staggers me that Lyme disease is not recognised as a diagnosis by (some of) the western medical fraternity, so hopefully by sharing you will put the spotlight on this issue. We have so much to learn from you, thanks for being so generous despite all you have been through. Love, light and healing to you. No more drinking your own wee though…. 🙂

    PS I once grew my fingernails to what my 12year old self considered an impressive length and was so proud I cut them all off and diligently stuck them in little rows like fingers in my diary, on March 23rd, 1989. I still have that diary.

  16. Nicole, I’m so relieved for you that you finally have a diagnosis – and so sorry to hear what you’re suffering from. As someone with multiple health issues and who lives with pain every day, I can totally sympathize with you. Sending you many gentle hugs, love and positive healing energies! ~ Julie xoxox

  17. Very sad yet inspirational post. My husband was bitten by a tick as a child and ended up with the bulls eye rash. I, personally, believe that the tick bite had something to do with his Lymphoma (Stage 3) and autism. Lyme Disease is incredibly common in Connecticut and all of the northeast USA. Honestly, I think it should be declared a health crisis and be seriously looked into (and treated!!) I’m inspired (maybe) to blog about my PTSD and write about the time a shrink told me I was “an attention seeker” for bouncing my knee and rolling my eyes back into my head when in fact I had Tardive Dyskensia. Ohhhhh the stories…..there are so many. Anyway…..YOU GO GIRLFRIEND!!!!! LOVE YA! Sending you hugs and kisses and love and healing and support from Maine!

    • Oh you bad, attention-seeking girl!!! Duh. Makes you want to upslap the sides of their heads sometimes, doesn’t it?

      I think it would be great if you shared some of your stories. They bring comfort and solidarity, and help others know that we’re not alone in this.
      Thanks for all the love, which I am also sending back to you on glittery rainbows, cos I like that sort of thing 😀 xx

  18. Oh my goodness, Nicole. I’m so sorry you’ve got to deal with so many severe health issues. You sharing your story here is a gift to those who may be going through something similar even if on a smaller scale. I so hope you can beat the gut issues and regain some of your life back. It’s amazing you do as well as you do considering everything you have to cope with. I admire your courage to undertake whatever possible cure/treatment you can find. You’re very inspiring. Hopefully that doesn’t sound to sappy! I really appreciate coming to your blog and reading whatever you’re sharing. Thank you so much for being here and continuing to fight for improved health. Much love to you.

    • {{{HUGS}}} to you, Natalya, and thank you. I’m hoping for good things for myself too. I agree, there are so many of us dealing with health issues on some scale, and feeling alone and misunderstood. I would much rather that people know it’s okay to be vulnerable, and to have your down days as well as the up ones. Bless ♥ xx

      • That is a good way of looking at things. I’m glad you haven’t loss hope. Thank you for sharing your experience and being vulnerable. Not many are willing to expose that side of themselves. {Thank you}.

        Blessings to you <3

  19. Nicole I’m so glad to hear you finally have some answers. Lyme is such a terrible thing which people know little about. Interestingly I just finished reading a book by Amy B Scher called This is how I save my life. She had Lyme disease and tells her story almost like you just have. She ended up in India for treatment. Anyway check out her site unless you have already. Sending you positive healing vibes on the next part of your journey. X

  20. Hi Nicole, it’s so sad to hear of what’s been a long and painful journey.. but wonderful to know you’re on the right path now (not that there hasn’t been benefit to what you’ve done before). Sending you light, love and healing energy xxx
    PS – one of the Drs I work with in Sydney deals predominately with Lyme (she’s an integrative GP) .. sounds like you’ve got good support now, but if you’re ever looking for additional advice, Kate Norris is her name and she’s fab.
    xx

    • It’s great to have the name of another Lyme literate doc – if not for me, for others. I’m glad I have done all I have so far. So much of it has been instrumental in me still being here, and still functioning. But I’m excited to see where this next phase of healing shall take me. Bless xoxo

  21. Hi Nicole. I’m so glad you have finally got some answers. I wish you every positive healing thought and vibe in your continued journey. Interestingly I have just finished reading a book by Amy B Scher called This is how I save my life. She suffered from Lyme disease as well and it’s all about her journey to health. Very interesting and controversial because she went to India for stem cell injections but her story is very similar to yours. Check out her site if you haven’t already. Take care and continue to let your love shine. xx

  22. Oh I wish you the very best on your journey of recovery ~ I worship my iridologist/naturopath, so maybe this is another avenue? Cheers ~

  23. Well Nicole, you are here for a reason and you have the tenacity and guts to beat this. There is a saying ‘inch by inch life’s a synch, yard by yard life is hard” ie one day at a time, moment to moment thinking. …. but you know this and have been practising it. Keep smiling. Love Cherie

  24. Can’t even begin to imagine the struggles you have had. It is not a lot but I am sending you all the strength and courage, I can for the next part of your journey. Love Marilyn.

  25. Nicole, I do hope that the diagnosis gives you some relief. The medical profession are just experimenting (My brother, a paramedic, who has just gone through bowel cancer said this to me – he said, they know relatively very little). It doesn’t surprise me that you knew something was wrong. We all know our own bodies the best – I just think it’s criminal that “professionals” can say it’s “all in your head”… well, the scans bloody prove it, don’t they. You are a brave, loving and awesome soul. I wish you a journey of recovery and management and love. You are incredible and I am glad you can now give your “malaise” a name and now battle the known. Love to you xoxoxo

    • It is good to give this thing a name, Jo! There is so much knowledge out there, and part of our responsibility for our own health is to seek it out, instead of being a passive witness in our own lives. I hope your brother is going from strength to strength. Love right back to you xoxoxo

  26. “Back yourself. Trust yourself. We always know deep down, when something isn’t right. Don’t ever give up looking for answers. Don’t ever give up expecting that you can have a better life.” AMEN to this Nicole. if you were not tenacious and persistent you may not be here writing this.
    Great to have a diagnosis after nearly 30 years- sometimes it is a challenge to believe everything happens for a reason 🙂
    As you say there is a gift each day. I feel so humbled reading your journey and my recent journey pales into insignificance. I will always remember your caring love and support for me over the past 18 months. I feel so grateful and blessed that I can now hold you in my prayers and mediation. Reading this brought up my issues with specialists particularly. What I find so challenging is the lack of medical awareness and resistance to integrative medicine.
    keep shining and smiling- I know you will beat this- as I discovered being positive daily meditation and for me an alkaline diet can create miracles.
    all my love
    Suzie xxoo

      • That would be wonderful Nicole- Maybe my GP recently called me a model patient they should hire me and after scoffing at my alternative she then started taking notes about what I was doing. I have yet to get to see her since my specialist fired himself. We can lead by example and like everything- there needs to be a readiness. Love you too look forward to seeing you soon xxoo

  27. So sorry that you have this disease, but so happy that you finally have a diagnosis! I can’t handle something if I don’t know what it is!

    There is an amazing documentary film out there about Lyme Disease. I watched it a while back. Here is the trailer. I’m sure that you can find local copies.

    I am also sure that guidance will lead you to the right healing and healers for you!!

    Sending lots of love!

  28. nicole, i hope you saw the continuation to my first reply above. i have given you the information to lead you to barbara’s herbal website and tons of information on how people have been helped with teasel. best wishes, pamela

  29. My husband & I were only talking about Lyme disease the other day & how it’s well & truly “out & on the table” in Nth Am compared to here in Aus. Having had a tick bite (NSW east coast) when young and many years later a Dr making a diagnosis of Rickettsia (related to Lyme), i found a good GP/natural health practitioner (can supply details if needed but you sound like you have it covered) who recommended a protocol of 18 months of 3 antibiotics (feeling sick throughout that) + no sun! Even hands covered while driving. I love my sunshine, so I made that my Plan B. Plan A was a combo of various things – kinesiology, bio-com, chiro & specific targeted meditation/visualisation + whatever else tested up at the time. Symptoms subsided and went. I would have gone down the path of Plan B if necessary, but was relieved when the little blighters were moved out of town through more gentle means. Great that you know exactly what you’re working with now. Hey, perhaps visualise those phasers from Star Trek. Look out critters, you’re about to become history! 😀 … zap!!
    Wishing you a comforting return to excellent health xo

  30. wow, I am stunned…………………..sending you so much love and support. I will be in the fight with you …………………………you will need every drop of your stubborness now!!

  31. Nicole I’m so happy you finally got a diagnosis. Being the science nut that I am, you could probably have that tick examined by a lab, they may be able to verify that it did indeed carry the bacteria causing Lyme disease (using DNA analysis, which is part of what I do but on humans), and start the process to prove to the govt that it DOES exist here.
    I’m not all that great with words but know that I’m so happy for you and I’m wishing you all the best and a significant recovery xx

    • Yes, I have to say that I’m Blessed to have had the sort of trials I’ve endured – they sure have shaped me into someone I like. Without them I may have been a much more materialistically successful person, but I’m sure I would never have developed so much spiritually or emotionally. Thanks for your kind words and support. {{{HUGS}}} xoxo

  32. Hi Nicole
    I am so glad that you now know what you are dealing with and if you believe that you can now be healed I am sure that you can. In the words of Abraham “there is no physical body no matter what the condition that cannot return to its natural state of well-being”.
    Thanks so much for referring me to Abraham when I first had a session with you in May of 2008. At that time you also told me that I had this wonderful gift of healing & that I would develop my own way of healing. At the time I was quite amazed about this but it has come to pass & I have had my own healing business for the last 18 months. I will send you some healing if you like.
    I certainly believe that anything is possible after helping a lady with terminal cancer recover completely over the last 12 months. A combination of chemo. radiation, energy healing, diet, chinese herbs and a positive attitude certainly worked in her case. Please see my website: theenergyhealer.com.au
    Blessings Fred

  33. Difficult to press the like button on this post. You know how to take good care of yourself. I’ve travelled a lot in my life and conquered Malaria a couple of times and all kinds of parasites, usually amoebe. Never hesitated to use the big canons on the small animals. Most often went to the institute of tropical diseases to get a diagnosis while the treatment was already going on and again afterwards. Got thick bites a couple of times with red circles around it. Always got antibiotics to treat them from our local practitioner.
    However, when I read the entire post, I think it is more a combination of several problems. So be careful. I’ll spend some of my meditation time on the Universe, on you and your invaders. Be well.

    • Malaria? The joys of travelling, huh? Yeah, I have a few things on my plate, but all stem back to Lyme. And I’m really Blessed, Bert, because I have a fabulous team of natural therapists, doctors and energetic healers, and I also have Guides and beautiful helpers through my meditation and psychic work, so I feel very well taken care of. Thanks for thinking of me and my invaders. Feel free to nuke them. 😀 With love, of course, but yeah, lets bring out the big canons!!!

  34. Wow. Thank you for sharing this part of your journey. I trust the new drugs will help in your recovery. I believe in miracles and who knows, there may be one waiting in the wings for you. Hugs, Brenda

  35. Nicole, I am blown away by this. You are an extraordinarily brave and determined woman. God bless you and I’m praying for massive healing for your body, mind, and spirit. Thank you for sharing this with us. — Lucinda

  36. Nicole, I am distressed to hear this news, and send you my thoughts across the airwaves .. I know you are one determined lady whose strength of willpower will enable you to do battle with this disease.. Mind over Matter I know you have and so I pray that you will be able to pull in the energies which will help strengthen and fight this ordeal … Sending you Healing and your name is now on my healing list … Blessings to you
    Sue

  37. Pingback: Diagnosis – Lyme Disease | Cauldrons and Cupcakes | Lyme Disease & Other Vector Borne Diseases | Scoop.it

  38. Nicole– Thank you so much for your vulnerable, open heart. I trust that life is giving you exactly the challenges that you need, but at the same time my heart breaks that you have had to go through such difficulties. I am glad that you found your diagnosis, and can begin to work more effectively with your symptoms, and know that your body was always speaking the truth about your health.

    Nicole

  39. Hi Nicole!

    This blog post has been like reading a page out of my own life :). I’m just starting treatment for chronic lyme disease & four coinfections after years of searching for answers and being told it’s all in my head. I’ve come to realise that “it’s all in your head” is doctor speak for “I don’t know what’s wrong” :). I have a predicted 2-3 years of treatment ahead. It’s very frustrating to think that another child could go through what we have, when it could be so easily prevented if diagnosed early.

    I would be grateful for any wisdom you can share during your journey :). I don’t suppose you have any tips for avoiding the herxheimer reaction?

    Sending love & light

    Another Nicole 🙂

    • Hi Nicole,
      I’ll include you in my healing meditations, and when I have a moment I’ll record a meditation for healing Lyme. As to avoiding herxing, I think it’s more about managing and minimising. Sometimes you need to cut back your meds a little, and diet, meditation, supplements and probiotics work a charm too. Am thinking of starting a separate blog on Lyme, so will keep you posted.

      Hang in there, sweetheart. I know you’ll get through this and out the other side a healthy, strong and much wiser woman. Big hugs to you. Bless xx

    • Hi ladies, my naturopath recommends activated charcoal for herx reactions. I’ve actually had the opportunity to use this for a herx and it really does help nip it in the bud and clears it up more quickly. Nicole, I have chronic lyme too.

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  41. It must be a tremendous relief to finally, after so many years, have a real diagnosis. If it were me, I would imagine that I would not only feel validation that I wasn’t imagining things, but also a renewed sense of control meaning that I can now do what it takes to move forward. You go kill all those damn bugs, Nicole! Nuke the heck out of them!

    And know that there is someone in New York who loves and cares about you, and can’t wait to stuff your face with Bourbon, barbecue, and pretzel croissants when you are ready!

    PS. Creepy and kind of amazing that your sister A) remembered, and B) kept the tick!!!

    • My sister is kind of into the creepy and amazing… It’s the scientist in her, I am sure. But hooray for that, cos who would’a thought to keep a tick?

      Keep an eye out for the mail man, dear friend. HAae sent you a little thank you in the post. Sooo disappointed we won’t be in New York next month, but I have plans to get there as soon as I am betterer.

      Much love to you, Daisy, and big hugs xx

      • Will do! Thank you!!

        Am also disappointed that you won’t be in NYC in March. But I know that we will get another chance in the future.

        Much love to you too, Nicole! Xx, Daisy

  42. Jeez, all that from a tick bite? I’ve always been very nervous about ticks but I had no idea they could do this much damage. To call it a nightmare is to state the obvious but thank goodness for a diagnosis. I imagine it must be a huge relief to find a reason for everything after all this time. It’s quite incredible.

  43. Nicole. This blog has hit a very deep chord in me. You are very special to me and I have often sent you healing rainbow light during our many contacts in courses kindness etc. you often will pop in my mind for no reason and I send you kind thoughts. For you dear Nicole to have this diagnosis and said the things in this blog is very surreal. My own daughter Nicole has been treading a weary path with me alongside her since she was 16. This journey has been 10 years so far. I have never given up and been extremely frustrated. We have tried much, and not as much as you. Late last year we stumbled on chronic lyme. We pleaded for a test. We were placated with the test and have a diagnosis of chronic lyme disease with co-infections. Then there was the search for someone to treat her in Oz. We live in Cairns and are seeking treatment via NSW plus natural therapy support and looking at 3 years of treatment and I am asking the universe to ensure the financial backing as there is no option but to kill off this wretched thing. It is horrid to know you too are on this journey but at the same time it is nice to know my Nicole is not alone. She at least now knows she is not mad but she certainly is not compassionate towards ticks. On your low days Niclole, know that their is a whole milleau of people whose lives you touch and who carry your wisdoms in our daily consideration and we are all sending you healing love and light. Much healing, happiness and rainbows for you LOL Jocelyn xo

    • Hi Jocelyn,
      I’m so sorry to hear of Nicole’s journey with Lyme. If there is any way that we can support you, please let us know. I have a very good, and cost-effective doctor in QLD that may be able to help too.
      Thinking of you and Nicole and sending all my love,
      Nicole
      xx

  44. Like Nicole commented (18-2-13) this was like reading a page right out of my life as well!
    A friend of mine forwarded me this blog of yours as I have recently relaxed a program I did hard core for 18 months and it has worked wonders for me!! It’s called GAPS (Dr Natasha Campbell-McBride). If you live in Byron, there is a practitioner in Lismore that uses the same program.
    I have complied quite a list of Lyme GPs too and many other bits of info. I was on the cusp of starting the antibiotic regimen in June 2011 … and toxic politics and crazy controversy about this approach aside, I felt my body just really, really, REALLY didn’t want long term, multiple antibiotics to be the treatment I needed to do. I decided (with blessing of my Sunshine Coast Lyme GP) to GAPS 100% for 6 months to strengthen my body somewhat before whacking it with antibiotics – with the option to continue with GAPS if it was proving good improvements and so further delay antibiotics. So 6 months in (& it’s not an easy road either) I knew this was completely the right thing for me to be doing (+ daily meditation and yoga). 12 months in I was certain and decided that I would not be doing the antibiotics route. 18 months on, I have started to relax the intensity of the program as I am so, so much better and stronger!! Nature is so amazing when you can work WITH it.
    Lyme is really nasty, and sometimes I think the medical system’s repeated ‘it’s all in your head’ rubbish is in some ways way more damaging than just the Lyme itself … and just like you, again, I have gone deeper within and done more work on myself than I would ever have done without it – and that is an upside for sure!
    Let me know if I can help you out with anything at all.

    Warmly
    Liz

  45. Dropping by to say I LOVE YOU.

    Continuous thoughts & prayers & meditations & Healing Light going out to you, Nicole. And gratefulness beyond words.

    (((warm hugs)))
    Mudd
    xoxo

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  47. Nicole I have a question, I have had all the same and last July the specialist also thought Lyme disease but blood result were normal. Hmm just wondering if you have particular cycles of when you know this month or day is going to be a repeat of the last? I’ve also been told the testing in Australia is not as good as over seas, wondering what you think? <3

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  52. Oh my dear friend Nicole… I can so appreciate your post and your journey as it is so similar to mine. I also had a recent diagnosis of chronic lyme. It has likely been with me for 30+ years and probably the spark that lit the fire of numberous autoimmune diseases that I’ve been challenged with since my childhood. I love your subtle sense of humor. I’m working with a naturopath that has treated chronic lyme patients for 6 years and she has many patients who are doing well. I’m hopeful, but I know the road will be long and bumpy. Feel free to check out my blog when you have a moment: http://autoimmunebattle.blogspot.com/ I wish you all the best in your journey. I’m rooting for you.

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  55. Dear Nicole,
    I am on a similar journey, only its called STARI or Master’s Disease. Eleven years since I was bitten by the lone-star tick. Recently, I was “guided” to start a regiment of “Artemisia Annua” tincture, it is also called “sweet annie”. It is wormwood, an anti-parasitic used in the treatment of malaria. I thought wow, finally a real bug killer. The bug that I carry is a cousin to the lyme parasite, its just harder to detect, since they use the lyme titer. I thought if this will kill the malaria parasite, it should smote this one, too. So far it has.

    Long story short, I began a low regiment, since I am extremely sensitive to most chemicals, including herbs. After a week (5 days) of five to three drops before bedtime each night, I am amazed at the results. I did feel a bit rough the morning after each dose, but it has been well worth it. The bottle calls for 20-30 drops which I Would Not recommend. Feel your way with it. To my utter amazement much of the clouded thinking is gone, the joint and muscle swelling is gone. I just feel so much better. It was strange, but I felt them panic or dying the first two or three days. It truly seems that they are dead and gone. Although, I am still open to a follow up dose, if it seems they are returning, so far so good. To be sure, I will do a second 5 day regiment. Five drops did affect my heart or so it seemed to. So be careful, please. I backed down to 2-3 drops and all was fine. Here is a link to the drops that I am using, purchased on Amazon for about $7.00. Somehow its ironic, that after everything that I’ve tried, the cure is only $7.00. Please remember that wormwood in large quantities is toxic. Your body will tell you when its had enough.

    http://www.amazon.com/Artemisa-Annua-Extract-Sweet-Ounces/dp/B0014APLBS/ref=sr_1_2?ie=UTF8&qid=1375942423&sr=8-2&keywords=artemisia+annua

    I have tried many things to stop the bugs, I had given up, but someone had me try one last time. I was spirituality brought the help that I needed, perhaps, I was also supposed to find you, that you might also find the healing you seek. I do hope that you find the healing that you seek, Nicole.

    Love and those blessings you would have,
    Kris

  56. I am so sorry to hear of all the trouble you have had to go through for your diagnosis. This article broke my heart and then slowly started to mend it as I continued to read it. You have such a wonderful outlook on life and such a refreshing perspective on this ongoing war of yours. You are so incredibly strong.

    I just wanted to say that I am genuinely sorry for the long and bumpy road that you have had traveled and continue to travel, and yet I am so thankful for everything that you have learned and have decided to share openly with the world. Since finding your blog about a week ago, I have felt so empowered and blessed from the abundance of information I have read and learned.

    Thank you

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  63. Dear Nicole,

    My name is Lauren and I live in Perth, WA. I am 24 years old. Your story had me in shock, awe and to be frank, tears. I am sorry for your diagnosis but your positive attitude is inspiring. I stumbled across your blog searching desperately for someone who could test me for Lyme Disease and your wonderful blog popped up so I began reading.

    I was also a very bright student, Head Girl in Junior School, Prefect in Senior school and thought I had incredible opportunity on graduating school. I fell sick when I was 12 and have suffered ever since. I have been diagnosed with glandular fever (similar to ross river), irritable bowel, chronic fatigue syndrome, rheumatoid arthritis, ankylosing spondylitis, fibromyalgia and a number of other auto immune diseases. I have had 3 ovarian surgeries and suffer chronic pain. I am also not ovulating and fertility is bleak. All I want is to be tested for Lyme or be diagnosed with something that ticks all of my boxes. Last year I lost 5 jobs as a result of my chronic exhaustion and illness – as well as my lack of concentration (I feel like my brain is slowing down or something?!?!).

    If you can think of anything that has assisted, please let me know. I am at my wits end and nobody seems to help!

    Lauren x

    • Oh Lauren, it just broke my heart to read your message.

      I actually have a number of bacterial infections – Lyme is just one of them. My other major issues are babesia, bartonella and mycoplasma fermentans.

      There’s a private facebook group you can join called Lyme Australia and friends. Someone there may know a Lyme literate doctor on the west coast.

      Above all, don’t give up. You KNOW there is something seriously wrong, so like me, I urge you to just keep going until you find a doctor to diagnose and support you.

      At 24 you are still so young, and I would hate for you to suffer as I have suffered. I actually had a good cry yesterday about the decades my sister and I have given to this illness, and how much that narrowed our choices and our lives.

      I’d love for you to have those years still ahead of you, filled with possibility instead of pain.

      I’m also putting together an e-book of what has worked for me and what’s working now. There’s a lot you can do on your own, but finding a supportive practitioner who believes in you and is dedicated to improving your health is a very important step!

      I’ll include you in my daily healing meditations and prayers. Stay in touch – it’s no good trying to do this alone.
      Much, much love to you,
      Nicole
      xx

      • Hello Nicole,

        Thank you very much for your reply. I have contacted Lyme Australia and I am waiting for them to get back to me regarding another Doctor. They said there is another in my area apparently.

        Chronic Illness is awful. I have only suffered for 10 – 12 years so I can only imagine how you have felt. I also spend a lot of time crying in hospital, surgery and doctor’s car parks. I am about to lose my house. In the past 8 years of my career I have lost 9 jobs due to chronic illness and disease. I had to give up my education, career, dreams and a number of relationships. I just feel so worthless from time to time. The hardest part is that people lack empathy or general understanding.

        I am grateful for what I do have but I can’t help but feeling like I just surviving or existing through life. I am getting married in July this year and worry so much that I won’t be well enough.

        I will keep you in my prayers too! Thank you very much. I am yet to find a practitioner that understands but I am not giving up until I find one. I have sought all kinds of alternative therapies and treatments. I just wish I could find something that works.

        I will continue reading your journey as you are a true inspiration.

        x

      • I’m so glad you’ve started this process. Trust that you CAN get better form this, and you WILL.

        Hang in there, and congratulations on your engagement. Your fiance has probably only known you unwell and still loves you enough to want to spend his life with you. Imagine how awesome things will be when you are vibrant, healthy and full of life!

        Love and hugs, Nicole xx

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  67. Hi Nicole,
    Im sorry to hear your story and inspired by your efforts.
    I was very positive and energetic and had a business in the most wonderful community that i loved and loved life!!!… at 28 yrs old, in the same month, I was bitten by a funnel web and stood on a stone fish, my life as i knew it was over a few months later and at 38 it still is, I have done everything it seems to get back to normal, even mms and that worked for a while, Im now trying the salt/c protocol, its on a site called lymesphotos, I have hope this may work.
    Have you tried this one yet?
    I just pulled the first tick out of my little girl and so far she has no rash, It is a scary thought knowing ones fete can be changed by a tiny bug.

    • Salt and C is one of my favourite protocols, and I have been using it for nearly a year.

      I’m really sorry to hear about your own struggles, Jolene. If your little girl goes on a short course of the antibiotic doxycycline it will sort everything out, even if she has been infected.

      Anything that supports your liver and detox pathways will help you too.

      Thinking of you and sending love, Nicole xx

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  74. This story hits home I’m 5 n a half years in my lyme journey. I have to write this if some one has lyme and has no looked into iodine supplementation (lugols) they absolutely must its the thing that has helped me this most. Iv been off work the whole time iodine for dry eyes and a little bump in energy and overall better I’m still fucked though anyway its all about peeling the onion layer by layer. U go girl

  75. Hi Nicole, wow what a journey, I really feel for you. I contracted Lymes disease last year, a tiny tick behind my ear, so small you could fit 6 on a pin head. I am no stranger to tick bites, I live on the far north coast of NSW on a property and there are plenty out there. Luckily only a few carry the disease. Also in my favour I have a GP who has been studying the effects of tick bites and diagnosed me straight away. She was at the forefront of the recent discovery of tick bites causing anaphalexis after passing on a normally harmless protein/enzyme found in mammal meat- anyone infected with this risks death every time they eat mammal meat. There was a story about it on Catalyst last year.
    Even in it’s early stages, I had severe headaches and massive joint pains, I can only begin to imagine what you were going through. Earlier in the year I had purchased an infra red mat for my wife who was suffering from liver cancer and I knew it was good for pain, so I started using it twice a day with prescribed antibiotics, the pain was gone after 24hrs and I have had no further problems. I was that impressed, I now distribute them (Springvale Health- Biomats Australia). This is not a sales pitch, there are several distributors in Australia that you could contact and speaking from experience, they do work. There are several youtube videos from the USA from people who have used Biomats to cure Lymes disease, whether they have a vested interest or not, I am not sure.
    Through our cancer journey we have been recommended so many different things (we have spent over $80,000 out of pocket on different natural and complementary treatments) that it starts to do your head in, then you get all the conflicting stories too. No doubt you have been down the same path. If you would like any further information, I would like to help you, no obligation of course. Feel free to contact me, my details are on my website http://www.springvalehealth.com.au.
    All the best for your future health
    Warm regards, John

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  77. This is a wonderful article Nicole – one that could have been written by me. In 1994 (aged 23) I was living in Boulder, Colorado and one Tuesday after a weekend camping and hiking in the Rocky Mountain National Park, I found an angry looking infected bite behind my right knee. I visited a medical centre nc was treated for acute Lyme with 3 weeks of oral antibiotics. I really had no clue about Lyme Disease – my main question at the time (embarrassingly) was when I could drink alcohol again! I took the antibiotics and never gave it another thought. Prior to going to the USA my health was unremarkable – appendicitis, sinus op and an op to fix a congenital malformed urea. Oh boy did that change! Over the last 21 years my health has declined. In September 2013 things really ramped up. I was driving to my hectic Marketing Coordinator job, which I loved, with a consumer healthcare company (vitamins/minerals/over the counter products) when it was like a green film came in my field of vision. I felt very sick and kept telling myself I could get to work safely, pulled into work parking in a visitor car park, clamoured up 2 flights of stairs barely able to hold myself up and struggled into my boss’ office barely able to stand. I opened my mouth to speak but could not speak properly as the right side of my face had collapsed. My boss took one look at me, swore, and yelled for help. Taken by ambulance to the emergency department they were sure I had a stroke. But no, it must be Bell’s Palsy. But no my face droop resolved. And there the roller coaster began. I pushed myself to continue working but it took all my energy and resources to get to work. The first specialist I saw was a neurologist as I had problems walking, started falling over and had tingly numb limbs. She thought I had MS but no lesions on brain MRI…. December 2014 came and I could not continue to work. Summer heat made everything worse. Finally It was suggested to me I be tested for Lyme so I found an LLMD and sent my blood to Infectolab in Germany – a government accredited lab that specialises in tick bourne disease. I thought great I have a diagnosis. How wrong I was. Even though I was bitten by a deer tick in the USA in a well known tick hotspot I was told by my GP that if I wished to reveal my Lyme to specialists I must hammer home the point I was bitten and treated for acute Lyme in the USA as ‘we don’t have Lyme in Australia’ and ‘the medical jury is still out on whether chronic Lyme exists’. I have under active thyroid; adrenal fatigue; Mercury overload; did have gynaelogical probs including uterine fibroids, ovarian cysts, endometriosis, miscarriages, difficult pregnancies, premature births – that lead to full hysterectomy at 34; fibromyalgia, chronic fatigue, immunity problems, varying degrees of cognitive/memory/speech issues; pustular psoriasis; morning right side facial palsy; nonalcoholic steatohepatitis (liver disease) with early fibrosis which will lead to cirrhosis; heat intolerance; gastric reflux disease; high cholesterol and sky high triglycerides not lowered by 2 years on statins; painful arthritis in hands/wrist/knees/ankles/feet – GP thought rheumatoid, but no Rh showing in bloods; ulcerated small bowel which has led to vitamin and mineral deficiency – black stain on front tooth – teeth breaking, 1 crown and 11 fillings last year and now need 2 more crowns, 14 more fillings and veneers to cover the black mark, osteoporosis, low blood calcium, high parathyroid hormone, hearing loss in right ear, hair thinning/loss (think the girl version of combover); made me susceptible to many viruses; norctournal bladder weakness in summer; muscle pain and weakness; falling; pancreatitis and pseudo cysts in pancreas….and probably more I have forgotten about. I see 6 specialists (neurologist; surgeon; gastroenterologist; psychiatrist and in Feb 2016 a rheumatologist and next week a cardiologist); my GP and the LLMD. I have not driven since December last year. It is unlikely I will return to work. I sleep, go to appointments and try to be the best mum I can be to my teenage kids. My boyfriend of 10 months deserves a medal. I am doing a gluten free/sugar free/dairy free diet with lots of herbal supplements in preparation for Lyme treatment of sauna, ozone therapy and IV. None of that is covered by Medicare or Medibank Private. It can be as brutal a reaction as chemo. It will not cure but might help. It costs $4000 for 1 month. Not only does this disease ravage me physically and mentally; makes me housebound other than doctor, chemist and carefully planned shopping trips…..but requires the budgeting and financial noise of a CEO to keep all the balls in the air. My advice to anyone on this path? Take one day at a time and think about it as much as you need to in order to make appointments etc Concentrate on what you can do things you, find enjoyment in the everyday and count your many blessings! Medically Lyme has infiltrated many organs/body systems/nerves/muscles but it will never dampen my passion for being the very best version of me that I am capable of. I wish you every success in your journey – you will find out who your friends are, some people will not understand because ‘you look so well’ (yes make up etc hides all!) and you will go through a grieving process as you accept certain things you can’t do or find new ways of doing things. All the best!

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  79. Today is a tough one for me… just stumbled upon your site. What a wonderful generous fighter you are! Thank you for sharing. Thank you for the encouragement…. I’m usually the encourager but today I’m just too tired and out of steam… I’m out of strength and out of ideas of where to turn next. So thank you for being a friend when i really needed one today. I will pull it together and fight on…. I’m just a little empty today. If you can do it….so can I! Bless your cotton socks for being so courageous and infecting me with a little sunshine today. We can do this!!! Big Love. Meli xx

    • Hang in there, Melissa! I know that recovery is possible. Mine is slow, and I still have my moments, but I am doing things this year that haven’t been possible for me for decades. Sending so much love your way, Nicole xx

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  81. I’m considering getting a SPECT scan to identify problem areas and hopefully get a plan of action to address those problems to heal from Neuroborreliosis. Was there any helpful info that the scans provided for you? I have to pay for it in cash, so want to make sure it’s a worthy investment on this healing journey.

    • SPECT scans were a very useful diagnostic tool for myself and my physicians. But they didn’t lead to a treatment plan – all they showed was areas of my brain and cognitive processes that were abnormal. You can’t fake that stuff. The big issue is treating infection. What worked best for me (after trying everything else pre-diagnosis) has been antibacterials, anti-biotics and anti-microbials with biofilm busters – as well as diet and supporting herbs etc followed by essential oils and herbs. I am about 80% better and improving all the time. I know that you can heal too. The Burrascano Lyme Protocol and Cowden herbal tinctures have been of great use for me and my medical team. Google them – you can get free downloads of protocols. Sending so much love your way, Nicole xx

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