My Story

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I grew up in a small town in California.  I come from a family with a complex and dysfunctional history and, as a result, my childhood was in many ways extremely traumatic.  There were good things, wonderful things even, and all my experiences helped form me into the compassionate and loving individual I am today.  However, there also is a lot of residual pain.  And, as many studies show, early experiences of trauma correlate with an extremely increased risk of disease in adulthood.  I do believe that my negative childhood experiences have greatly contributed to the health problems I now face.  With that being said, I see my illness as an opportunity to finally truly heal those wounds.  Indeed, I feel healing on an emotional level is one of the most important things anyone can do to recover from disease.

From a young age, I can remember never really feeling well.  I remember lacking energy, and suffering from severe sadness at an early age, and then depression as an adolescent.  I grew up eating a fairly standard American diet.  We did have homemade foods that were nutritious, such as beef stew and fresh vegetables, but for the most part my diet consisted of Kraft Mac n Cheese, Lucky Charms, Poptarts and the like.

I had always loved animals and felt a deep connection to them, so, at the age of 12, I became a vegetarian.  I was fiercely devoted to animal rights, and I became involved with PETA and other animal welfare organizations.  Vegetarianism was my dogma.  When I was 18 I switched to an all vegan diet.  At this time I was also away at college and didn’t have the first clue about healthy eating.  I assumed, based on the claims that veganism is the perfect diet, that I was automatically healthy by association.  In reality, my diet was toxic.  I was drinking alcohol regularly and subsisting almost entirely on carbohydrates and soy products.  I would eat veggie burgers on white buns, tofu scrambles, vegan cookies, vegan ice cream, etc and down it all with soy milk or Gatorade.  I put on 10-15 pounds, all in body fat.  I felt run down, but I still was perfectly functional and unaware of the damage I was doing my body.

At 20, I became cognizant of the issue of food quality and became interested in eating as healthfully as I could.  I began shopping at natural foods stores and buying organic, but I was still consuming things like Tofurkey and soy-based cream cheese.  As I read more and more, I began to realize how unhealthy all the processed foods and soy I was eating were and I became focused on whole foods.  I became a raw vegan eating sprouted nuts, seeds, and beans, juicing, taking green powders, focusing on alkalizing more.  Yet I found myself feeling worse than ever.  Still, I stuck with it because all the books and experts said it was the best way to be healthy and, of course, because I loved animals too much to eat them.

Around the age of 22 I came down with some sort of parasite.  At the time I was a broke college student without health insurance and did not see a doctor.  Instead, I researched and diagnosed myself as having Giardia.  I was extremely ill and weak for over a month and during that time took multiple herbal anti-parasite formulas.  Eventually, my symptoms subsided. But, it was the beginning for me of severe food intolerances (I learned later that infection can often ‘turn-on’ bad genes, which I feel is what happened in my case).

I had begun eating cooked foods again, but at this point was still vegan.  I started to have severe bloating, cramping, acne, brain fog, fatigue, depression and anxiety.  I suffered like this for a couple of years, and eventually decided to add dairy and eggs back into my diet in the form of pastured eggs and raw organic dairy.  I also added in fermented foods such as sauerkraut and took many supplements.  All this helped, but only slightly, I still felt terrible.

It took lots of reading and experimentation to finally realize that I was gluten-intolerant.  I removed gluten from my diet and experienced improvement from my severe digestive symptoms- but almost all of them continued to affect me, just in more minor and infrequent ways than before.

During this same time, I was experiencing a series of stressful relationships, within my family system as well as with romantic partners.  At the time I had no idea that I was repeating the unhealthy patterns of relating that I had been exposed to growing up.  I also was working as a nanny, often caring for multiple children under five, which, as any parent or childcare provider knows, is simply stressful by nature.  I now realize I was compromising my body by overexerting, overextending, and not having the healthy boundaries needed to protect myself.

I began to slowly build up boundaries and continued on my journey towards eating as healthfully as I knew how to.  I also started taking many different supplements and switched over to all natural body-care and cleaning products.  I made the heart-wrenching decision to add meat back into my diet and began consuming pastured beef, chicken, and fish.  A few years passed with little improvement and my symptoms went from manageable to nearly debilitating- the fatigue, brain fog, anxiety, PMS, mood swings, shakiness- everything was getting worse.  My digestive issues returned full-force despite the fact that I was eating better than 99% of people I knew.  I was eating entirely organic, consuming very little sugar, only whole grains, tons of vegetables, fermented foods, fruits, pastured meats and healthy oils and fats such as coconut oil and raw butter.  Yet it seemed that every single food bothered me.  I was completely confused and felt incredibly helpless.

At this time things were so bad that I had no choice but to finally turn to a health practitioner (which I wish now I had done years earlier).  I was able to find an integrative medicine office where I worked with a nurse-practitioner, and also learned that Celiac disease is very common on one side of my family (a fact I had been ignorant to as I never knew my dad or his side of the family growing up) and this was the start to understanding my problems.  The nurse practitioner suggested I be tested for the genetic component of Celiac (I had been gluten free for years, so it wouldn’t have made sense to have done other testing) as well as for overall vitamin/mineral levels and adrenal function.  I tested positive for the genes for Celiac (and given my symptoms they felt it was safe to say I have it-around the same time I also was given food that was supposed to be gluten-free and halfway through I realized it was not-the reaction I experienced was terrible and it left me sick for weeks, so I believe 100% I have Celiac even though I do not have the typical official clinical diagnosis) and was found to be severely deficient in important nutrients such as Vitamin D, Magnesium, B12 and iron.  I also had the lowest adrenal function they had ever seen in someone my age and was diagnosed with adrenal fatigue.

I began to frantically research Celiac disease and discovered that cross-contamination alone is enough to cause an immune response.  I was eating out often and consuming things produced in facilities where wheat was present.  So I stopped eating out and ate only food prepared at home or that I knew with certainty to be completely free of gluten.  Still, I was having severe food reactions to things such as rice, eggs and dairy. In my reading I came across the issue of gluten-cross reactors and realized my diet was filled with them.  I also underwent allergy testing and discovered I was having immune-reactions to many foods including nuts which I was eating almost daily.  The doctor said it was safe to assume I was suffering from Leaky Gut.  I came across the AIP diet (Autoimmune Paleo) which eliminates all gluten-cross reactors, dairy, eggs, grains, refined sugars, nightshades, nuts, and seeds.  It may sound extreme, but it is the only thing that has helped me to recover digestive-wise.  I am so thankful for this diet.  If I stray from it- for example I recently tried some brown rice- I get immediate symptoms.  Hopefully, at some point, I will be able to reintroduce foods such as eggs, but for the time being I am sticking to what works.

It was daunting at first, but there are SO many amazing resources out there to help you transition to AIP.  I would recommend The Paleo Mom  and her awesome book The Paleo Approach to get started.  As I continue this blog, I will intermittently post links to AIP friendly recipes and blogs and more information about dietary choices.  I cannot recommend this diet enough.  In many ways, Lyme is considered to be autoimmune related.  I think for anyone suffering from Lyme, diet is a huge key.  I hear many people complain that it is ‘too hard.’  But PLEASE, what is TOO HARD is not being able to get out of bed, to feel as if you are dying, to forget words, to suddenly be so dizzy you have to sit down, and all of the other symptoms that result from Lyme.  Eating ice cream is NOT going to heal you whereas nutrient dense healing food has the power to transform your health.

In addition to the diet I began taking pregnenolone (a bioidentical master hormone to help with adrenal issues), Vit B12 injections, Vit D, charcoal and a variety of other supplements (many of which I had already been on and off over the years such as magnesium).  I experienced some noticeable improvement which I contribute largely to the B12 injections and the pregnenolone.  I increased my dedication to therapy and my meditation practice as well, which helped me to begin to heal old wounds and to operate from a much calmer place.

I made the decision to move out of my studio into an apartment so that I could have a fully functional kitchen to operate in (AIP requires quite a bit of time in the kitchen and a kitchenette doesn’t cut it!)  The apartment was beautiful, located in the hills of Marin, quiet, secluded, freshly painted with new bamboo floors, and my cats loved it 🙂  It seemed perfect.

However, soon after moving in I began to experience scary new symptoms such as tingling hands and feet, blurry vision, balance problems, itching, and feeling as if my brain was literally empty in space.  My migraines returned and I was so weak that going up the stairs to the driveway required incredible determination and left my legs burning.  My depression and anxiety levels skyrocketed. I began to want to isolate even more than I already was (I’m an introvert), all I wanted was to curl up and disappear. I had no energy to interact with other people.  It became harder and harder to function at work. Any time that was not spent working or cooking was spent in bed.  Regular tasks such as driving or taking a shower left me exhausted.  I remember one day in particular- I dragged myself out and bed and into the shower and collapsed afterwards on the bathroom floor.  There, laying on the cold tile, I began to seriously wonder if I had cancer, MS, or some other life-threatening illness.

Around that same time I developed an extreme sore throat and took off work to go to an Urgent Care clinic.  I tested positive for strep-throat and, though I am typically very holistically oriented, decided to go on the antibiotics since the doctor informed me if I didn’t I would remain contagious for two weeks or longer.  Within hours of my first dose I was incapacitated in bed.  I hadn’t had strep throat since I was a child, or taken antibiotics since I was a teen, so I assumed it was perhaps just a normal reaction.  I returned to work and struggled through one day, but couldn’t do any more.  Luckily, the family I worked for headed out on a two-week vacation, so the pressure to work was off the table, at least for awhile.  I became so sick over those two-weeks that I literally wanted to die- I began to think of ways to kill myself.  I was in such extreme pain- agony really, and my mental state was completely imbalanced.  I didn’t feel in control of my thoughts, or in my body.  I just felt pain and disassociated.  I knew I had to see a doctor as soon as possible.

I booked an appointment with the main doctor at the integrative medicine clinic I had been going to.  I brought in a long, long list of symptoms and my history (which I recommend everyone dealing with chronic illness does when seeing a doctor- write it all down and make copies, otherwise you tend to forget).  He was/is a wonderful doctor, and told me he believed I could have Lyme, mold toxicities, and a few other things going on.  He ordered over $8,000 in bloodwork (thank god for insurance, it covered almost all of it!) and I headed off to the lab that same day to have 23 viles of blood drawn!

When I had heard him suggest Lyme, I really struggled with the idea of it.  I had watched my sister go through Lyme, and she had been so debilitated that she could not walk.  She was sick for years, and eventually suffered from a stroke.  This beautiful, previously healthy and athletic woman, required open heart surgery at the age of 28 because the Lyme attacked her heart causing a condition the doctors at UCSF had never seen before and could only find one case history of in existence.  Going into surgery, they told her there was a chance that she could die.  Seeing my sister go through that scared me so much, and I didn’t want to think the same could happen to me (she is now in remission from Lyme and a huge inspiration for me, I love her! She is on the right in below photo!!!)

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My doctor ordered multiple Lyme tests, and all showed positive.  The labs also showed that I have severe mold allergies and that I was suffering from mold toxicity and brain inflammation- no wonder I was forgetting how to read!

I realized that my living space was contaminated with mold from water damage, hence the rapid decrease in my health after moving.  I also realized that my workplace had some mold as well.  My doctor explained that your body has a breaking point, and I had reached mine.  He believes I have had Lyme disease for a long time now, and that the mold exposure sent me over the edge.  I grew up spending vast amounts of time outdoors.  We had property with large fields and I remember having ticks crawling on me as a child  and pulling them off my dogs.  I spent time backpacking, camping, rolling in leaves- there are a million different places and times I could have been bitten.  Many people falsely believe that Lyme is not common on the West Coast, but multiple studies are showing it is incredibly common in this area- Lyme is NOT just an East Coast thing- it is an epidemic and it is spreading.

I was also diagnosed with having the double MTHFR mutation (read more about it here).  This mutation is extremely common among those of us suffering from autoimmune disease, food sensitivities, mold toxicity and Lyme.  In short, it negatively affects your body’s ability to detox toxins and to assimilate b-vitamins. This explains why I did so terribly on a vegetarian diet, even with b-vitamin supplementation (if you have this mutation, only the methylated forms of b-vitamins will help which I was not taking- and even then you need b-vitamins from animal products to avoid deficiency).  It also explains why I did so badly on the antibiotics I took to treat the strep-infection.  I was killing off the Lyme (which had been happily existing in my body for who knows how long!) and was unable to detox all the toxins from die-off.  I essentially was a toxic cesspool!

It was amazing to finally have answers, but also incredibly scary.  Unlike most people, I already knew A LOT about Lyme. Having watched my sister go through it, I’d researched it extensively.  I had seen Under Our Skin, read stories and blogs etc.  And, these things were not exactly hope-inducing.  You mostly hear of people suffering immensely, spending thousands on medical care and still never getting better- or, getting slightly better, but then relapsing.  You even read about people dying from Lyme related complications (which is what I woke up to on my Facebook feed today :().  You hear that no one knows exactly how to treat it, that there is no cure. So, it was great to know what I had, but absolutely terrifying to know what I was up against.

After diagnosis, I went through what I now see in retrospect, to be the seven stages of grief.  They are: Shock & Denial, Pain & Guilt, Anger & Bargaining, Depression Reflection & Loneliness, The Upward Turn, Reconstruction & Working Through, and finally, Acceptance & Hope.  If you are suffering from Lyme, or any other disease, I am sure you have also experienced, at least to some degree, these reactions, feelings and processes.  You may be moving through them now.  I find that I am now mostly in the stage of acceptance and hope- though I believe with things such as disease the stages are not always linear or completed once moved through.  I find myself falling back into various stages, and I accept that and believe it is part of this experience.  It is a lot easier to be accepting and hopeful on a ‘good day’ and seemingly nearly impossible to experience anything but anger and depression on a ‘bad day.’  But the important thing is that, overall, even in my worst moments, in the back of my mind, I have hope and the feeling that I can get through this, but I need to FIGHT.  It is not going to be easy, but I believe it is possible.

In my next post I will write about my initial Lyme treatment plan set up by my doctor, and about the new treatment protocol that I have come across on my own which I will be embarking upon soon.  I also plan to write about issues such as mold toxicity, genetic mutations, mindfulness and more.  Hopefully what I have learned and what I will learn will be of help to others.  I am here to share.

Until then, stay hopeful.  Remember, in order to become a butterfly the caterpillar must create a protected space and within it dissolve before emerging transformed.  We must do the same.

Healing is possible, I know it is 🙂

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7 thoughts on “My Story

  1. I was going to say something ridiculous like ‘welcome to the club’ but it seems completely inappropriate after reading your story.

    I really enjoyed reading it though, it’s amazing how everyone’s journeys are so different but also so similar at the same time.

    I was unusual in that both times I crashed, it was very very sudden.. Overnight in fact. I now know it’s because my main infection is and was babesia which moves faster than lyme.I had no idea what lyme disease was when I got sick, and it was only by chance that after 4 months of being bedridden that I stumbled upon it online, decided that’s what I had, and then went through the usual horribleness of arguing with doctors about the accuracy of the two tiered testing. I eventually tested positive with Igenex. Being in the UK and having a national health service that won’t treat lyme past the 2-3 weeks doxy, has meant my partner and I have spent probably close to £20k ($30k) in the past 2 years. We’ve travelled to two other countries to see doctors. At last I’ve found a fantastic doctor in California.

    I’ve also had awful gut problems, mostly as a result of long term anti biotics. I’ve found the low fodmaps diet, anti fungals, and high dose vit c to keep things moving are the (temporary answer) for my gut woes, at least until I finish treating. Like you, I had times when I couldn’t eat anything without a horrible reaction and immense pain, I lost a ton of weight, it was pretty miserable.

    It’s great news that your sister is in remission. I love hearing stories of hope like that, after 2 years of treating and still feeling like I have a way to go, I often find myself feeling rather dejected.

    Anyway, sorry for the waffle! Lovely to read your story, and I look forward to reading more from you!

    Louise

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    • Hey Louise,

      Thanks for taking the time to read a bit about my story so far. I agree, we are all going through many of the same things, yet every one of our stories is different. It is absolutely not right that you have had to leave the country to find proper treatment, that is crazy! But, I’m happy you have finally found a good doctor- may I ask their name? I’m in California too.
      The politics around Lyme are scary, and this is definitely an extremely costly disease to have. I wonder sometimes how many people out there are suffering immensely because they cannot afford the treatments and because, for many, working while having Lyme is not even an option.

      What anti-fungals are you on if I may ask? Also, I am getting ready to start IV treatments soon, was that a good experience for you? They are pretty pricey here (around $150 for one Vit C treatment) and I’ve heard you have to do them pretty consistently to see results. I’m definitely interested in IV glutathione since I’ve heard many positive stories about it. My sister is doing wonderfully now, so don’t give up hope. It sounds like you are on the right track with diet and that alone makes a huge difference! Hang in there- there HAS to be a way through this and we will find it!!!! 🙂

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      • I haven’t had any of the supportive IVs as they’ve been out of my budget but I have high dose oral vit C which seems to do pretty much the same job for me. I’m lucky (?!) in that my gut doesn’t really work, so I can take higher doses than most people without it giving me the runs…

        I had 4 weeks of IV ceftriaxone at the beginning which was tough going, but I so desperately ill I don’t really remember it now. I have babesia and it irritated that quite a lot so I had crazy mood swings. It cleared up a lot of my neuro symptoms, but the lyme neuro stuff was never the defining feature of my illness, it was always more about babesia.

        I’m with a clinic in Santa Rosa, don’t want to write too much in public though. You could probably find them by googling.

        I take fluconazole, at first I was on 200mg every other day for a while, and now I’m on a maintenance dose, although I’ve had to up it slightly now I’ve started abx again recently after a long break to heal my gut up.

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      • Okay interesting about the high dose oral Vit C. I’ll look into that because I think I’ll only be able to do a few sessions of the IV therapy. Someone also suffering from Lyme mentioned fluconazole to me- they said they didn’t feel better until they started anti-fungals. I was up in Marin until a few months ago, and think I know the clinic you are talking about. There are a few other Lyme literate doctors up in that area- if you ever find that you are looking for a new perspective let me know and I can give you their info. Sending you healing energy! 🙂

        Liked by 1 person

  2. Hiya, nice to “meet” you! I found you through Louise. 🙂 I blog about Lyme, thyroid disease, allergic contact dermatitis (skin allergies) and various other topics. I am doing mostly AIP except I haven’t given up rice yet, and I’m also having a problem letting go of almonds. I have one MTHFR mutation (C677t). I don’t remember a bite but I live in New York, which, you know, ticks everywhere. I have a friend in Northern California and I think she’s seen most of the docs, so send me a blog message if you want reviews. 🙂

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    • Hey! Awesome to ‘meet’ you too. So far I think I have a really great doctor- he had Lyme himself so I don’t think you get any more Lyme literate than that! But I am always wanting to hear about the experiences others have had with LLMD’s so I’d be interested in hearing about who she is seeing. From what I’ve read, the ticks that most often carry Lyme are often incredibly small. In the last place I lived I had a horrific experience. I had just found out I had Lyme disease and that my apartment had mold that was making me feel like a 90 year old-I was in a total slump. I was petting one of my cats and noticed a little dot moving along the edge of his ear. Upon close examination I found the tiniest little tick..i removed it with tweezers -it hadn’t burrowed in yet- and looked at it under a magnifying glass to confirm- and sure enough it was a tick and it was practically as small as a period! It was traumatizing but it also made me realize that I really have no clue when I was bit. Ticks can be THAT small and somehow still have enough terrible bacteria in them to infect you. Ugh. Glad to hear you are on the AIP wagon. Rice was so hard for me to give up! I recently tried reintroducing it, but it didn’t go over so well :/ Oh well! I’m moving on to sweet potato noodles and cauliflower rice, which aren’t half bad but definitely not the same as rice noodles!!!! I was using almond flour in everything bc it is such a great sub for regular flour- you can make cookies, pancakes, pizza crust- but then I found out I was severely allergic and that gave me the extra push I needed to ditch them and I definitely felt way better. Have you done any allergy testing? I’ll check out your blog 🙂

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