What goes up, must come down…

….but, at least it WAS up!

It’s odd, about a week into using the oils I was feeling the best I have in years.. YEARS!!!!  It pretty much sent me into a panic… with thoughts like, “oh god am I losing it?” “Is this real?”  “Am I going to crash and burn?”

It also made me think, “Wow, if this is what life feels like every day for normal people, I can see why people are okay, even happy to be alive!”  (such a terrible thought to have as it signifies my typical depressive state…but then as you all know Lyme drains you to the point of despair and hopelessness)

I felt pretty good for about 4 days, and GREAT for 2.  I even started my period and had NO pain and NO PMS which is essentially a miracle for me.  My periods are usually debilitating and leave my writhing on the floor in agony firmly believing that if there is a God it hates women.  I feel like I am dying.  I know that the Lyme cycle typically corresponds with the menstrual cycle, which is why women often experience a severe worsening of symptoms around their period.  So, to have a pain free, tolerable period where I could actually function was HUGE and I believe the oils really contributed to that.

Anyway, on about day 2 of feeling fantastic, I went in to get my first Vit C/Glutathione/B-complex IV.  When I got to the clinic I was feeling good, happy, excited, optimistic.  Then, about thirty minutes into it, I literally felt as if something in my head sort of shifted and split open, and a flood of anxiety and depression was released.  I began to feel nauseous and achy.  At the end of the IV the doctor explained that I may experience a worsening of symptoms since my immune system is being triggered by the infusion of nutrients and antioxidants.  She said it could cause me to herx  (At $175 per treatment, I’m trying to decide if it is worth it if I just end up feeling crappy….but I suppose as they say you feel worse before you feel better…)

Well, I nearly fainted walking out of her office.  Stumbled to my car and barely managed to get myself home before collapsing in total and complete exhaustion.  That was four days ago and I haven’t gotten any better since my “crash.”  I feel tired, out of it, am messing up my words, am moody and depressed, unable to motivate, lack appetite, have joint pain and night sweats, and so, soooo much internal shaking and loss of coordination.  BOO.  I hate it.

This disease is CRAZY.  I keep having the same thoughts and questions go through my head- what in me believes I deserve this?  Does some part of me want to be ill (I think, subconsciously, some part of me does, in some weird attempt to get the care and attention that I so desperately wanted and needed when I was a child, except, I’m not getting it…)  Will this ever get better? etcetera etcetera….I’m not saying that any of us ask for this, or that anyone suffering from chronic illness is at fault…just, for me personally, I do believe I have created a pattern in my life that welcomes illness.  And, I need to address that before I heal. It feels so overwhelming and confusing and complicated…

And the up and the down and the all around is enough to drive anyone crazy…not to mention I actually have damage from mytotoxins that is probably making me literally crazy… anyways….

happy_stick_figureWhen I’m having a good day:

Thoughts-

  • “I’ve got this handled!”
  • “There is a lesson in all of this and I’m on journey”
  • “Life is beautiful, I’m so grateful to be alive”
  • “Life is great!!!”
  • “I look wonderful today!”

poker_face_smiley_post_card-rcaa19305680b4586ae6a86b75c5e9eb8_vgbaq_8byvr_512When I’m having a semi-functional day:

Thoughts-

  • “Hey, I can do this”
  • “I’m going to be okay”
  • “This isn’t so bad”
  • “I just need to keep fighting”

sad-face

When I’m having a bad day:

Thoughts-

  • “Fuck life!”
  • “I hate everyone!”
  • “I’m never going to be okay”
  • “How am I going to get out of bed”
  • “Life is pointless”
  • “I don’t think I can leave the house”
    • “My skin is worse than 99% of people I know and they are eating candy bars and boozing while I’m downing green juice and avoiding sugar like the plague.  Time to cake on the concealer. WTFF!!!???

You get the drift….my mood and thoughts are all over the place, and I feel like I never know what I will get.  Will I wake up so anxious I can barely move my body because I’m shaking all over?  Will I feel suicidal tonight?  Will I be able to make it through work?  I just read this in an article ““Lyme produces a microedema, or swelling in the brain.  This affects your ability to process information. It’s like finding out that there’s LSD in the punch, and you’re not sure what’s going to happen next or if you’re going to be in control of your own thoughts.”  (see article here) Yep..pretty much.  But at least if it was really LSD you would get the fun parts of it too instead of just feeling crazy and brain-dead and completely out of control!!!!

Purpose-of-Life-Stick-Figure

It is absolutely maddening.  And incredibly confusing.

I see people posting pictures of their wedding photos on Facebook and positive pregnancy tests.  People I used to know, but don’t anymore because I have isolated so much over these last few years.  I find myself avoiding taking pictures and sending my semi-boyfriend (a long story there) links about the spoon theory and about how Lyme makes you a recluse (this article I think does a pretty good job of explaining) so he will understand why I just want to hide most of the time.  But really, I don’t think anyone can understand this unless they are in it.  And, I don’t want this disease to define me.  I don’t want being sick and depressed to be my story.  But, at the same time, I can’t deny the reality of this experience, which involves a huge amount of feeling awful both mentally and physically…in ways that thoroughly alter my ability to live life.  Sigh.

So, today is a bad day.  I have had to struggle to get through it.   When I get like this I just do what I can to keep going along, and to keep hoping and believing that one day I will be better, not just for two days, but forever :/

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Holy Moly!

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wait…what is this feeling?!? Is this some sort of trick!?

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Okay….WHOA.  Like…major WHOA.

I……

FEEL…..

GOOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am completely baffled, confused, and honestly terrified because I don’t want it to go away.

Today is day six of the oils and for the first five days I herxed pretty badly.  Yet somehow it was okay. I had a crazy fever, hot flashes, a migraine, crazy brain fog, extreme joint pain, terrible sleep, congestion and other herx symptoms – but I felt somehow stable and like my body was really working things out.

And, since about mid-day yesterday, I have felt GREAT!!!  Better than in AGES.  This feeling is actually so foreign to me that it has me wondering if I have suddenly become bipolar and am experiencing my first maniac episode!  It’s crazy.

Of course, I still feel bodily a bit messed up, but mentally I just am so balanced, happy, optimistic and capable.  I’m tackling laundry, cleaning, paying bills, running around- but it doesn’t feel like I’m doing my usual ‘get a bit of energy overexert then crash and burn’

This feels real and even and I feel more in my body than I have in so, so long.

To add to the confusion-I am just about to start my period and this time of the month is usually the absolute worst for me, total hell and my mood is usually crazed and depressed!

Wow.  The ONLY thing I have changed is that I have started taking the oils internally as well as applying them topically and diffusing them.

I’ll write a longer update in a few days, I REALLLLLY hope I stay feeling this way.  Please, please please!!!!!

Essential Oils- They’re here!!!!

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As I mentioned in previous posts, I’ve decided to try a less-conventional route to treating my Lyme disease (and other various issues!) I have felt very drawn to essential oils and after a lot of research and discussion with people using e.o.’s themselves I think I’ve found a protocol I feel really good about.  I’m feeling super excited, and super optimistic.

I ordered the oils through doTERRA.  Their oils are extremely high-quality and unique because they are safe for internal use.  I also ordered a few of doTERRA’s supportive supplements.  Unfortunately, some contain less than ideal ingredients such as carrageenan (linked to stomach cancer and all sorts of other terrible things), polysorbate 80 (a preservative), soy and yeast…. which I only discovered after receiving them…majorly bummed (and confused, come on doTERRA!)  Luckily those supplements aren’t majorly needed players in my protocol so I am going to return them and forge ahead with what I feel is safe for me to take (aka free of sketchy ingredients!)

d731352e81db11ed9d1d94644f1fef38 (1)For the next two weeks my protocol will consist of the following:

David Hill Protocol-

3 drops of each of the following essential oils in a gel-cap 2x per day (thyme and oregano are the most important)

  • oregano
  • thyme
  • cassia
  • cinnamon
  • clove

And 1-3 drops of the following under tongue 2x per day

  • Frankincense
  • Melissa
  • Patchouli11d401f31410607d9411264ca5723f17

In addition I’ll be taking the following which are all also doTERRA products:

  • Terrazyme (Digestive Enzymes)
  • Lemon Oil in water
  • Zendocrine caps and zendocrine oil (to help with detox)
  • Digest Zen oil blend (to help with digestion)
  • Slim & Sassy oil blend (overall support)

I will also be using the following doTERRA oils aromatically (in a diffuser) and topically (on skin) to help with moodfrankincense_card1_web(pp_w765_h546)

  • Citrus bliss, Balance, Elevation AM
  • Lavender, Vetiver, Serenity PM
  • Deep Blue for body aches and joint pain

In addition I will continue taking the following supplements

  • Magnesium (Natural Calm Brand)
  • Dessicated Beef Liver (from grass-fed cows)
  • Collagen (Great Lakes Brand)
  • Detox powder (charcoal and herbal blend)
  • Methylated B-vitamins
  • L-tryptophan and melatonin (as needed for mood and sleep support)
  • Probiotics
  • Fermented Cod Liver Oil & Krill Oil
  • Bee Pollen/Propolis
  • Essiac Tea (3 oz 1-3x a day)
  • Adrenal Complex
  • Red Root (for lymphatic support)
  • Fat specific digestive enzymes
  • Turmeric/ginger (for inflammation)
  • Celandine (for gallbladder support)
  • Milk thistle (for liver support)
  • L-glutamine (to help heal gut lining)

After 2 weeks on this protocol I will take two weeks off of the antibiotic essential oils but maintain the rest of my supplement regimen.

Then I will start on a new essential oil antibiotic protocol- 2 weeks on, 2 weeks off, etc, rotating essential oil protocols.

So far I have taken two capsules of the antibiotic oils- one last night and one this morning- I wonder if I started too strong as today I was pretty knocked out- I completely passed out on my sister’s bed in the middle of the day and slept through tons of noise.  Feeling sore and pain in various areas and messing up my words.  Just talked to an old friend and kept messing up what I was trying to say (using the wrong words, spacing out, mispronouncing things)

I think I also might be dealing with yeast issues.  I reintroduced apple cider vinegar and the next day felt like my insides were all twisted up and have been itchy all over… not fun…:(

Regardless, I’m super excited about these oils and my protocol and will be updating as I go!!!  And, as always, am trying my hardest to stay hopeful 🙂

goal-setting

More info on how essential oils can help tackle Lyme disease

Essiac Tea

SSR bannerEssiac Tea is something I discovered about a month ago. I was reading a health magazine and it had an article about how this tea is being used to help treat cancer.

The tea is supposed to have the ability to boost the immune system and detoxify the body.  Depending upon where you get it (or if you make it yourself) it includes various herbs- the primary ones being: Burdock Root, Sheep Sorrel, Slippery Elm Bark, Turkish Rhubarb Root.  The blend I have been using also includes Kelp, Blessed Thistle, Red Clover and Watercress.

I knew my immune system needed a boost and I certainly could use all the detox help possible (having the MTHFR mutation makes it super hard to detoxify) so I decided to research it a bit more.  What I have found seems very promising.  There are people claiming that this has cured them from cancer, and if you read Amazon reviews on various Essiac products the majority are incredibly positive, even miraculous, stories of people recovering from severe illness with the help of this tea.

Apparently there are many products on the market that are subpar, so you have to do your research before ordering.  I ordered from this company and think their formula seems to be high quality and it is organic as well.  I took it for one week and noticed an increase in energy and an increase in detoxification.  I had a solid week of really good days soon after starting to take the Essiac.  I then got busy and was out of town so stopped.  I made a new batch and am on my third day back on the Essiac bandwagon.  I have a good feeling about this tea and am planning on continuing to take it daily for the next month and see if I notice any more positive impacts.  As always, staying hopeful!

Let’s Talk About Treatment Protocols

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Oh man, the number of different things I have tried over the years (pre-Lyme diagnosis & now entering into post) to try and get myself well again.  I haven’t gone the route of taking any pharmaceuticals- but I have tried probably every single supplement in existence.  I have had people who don’t know me well comment on the number of pill bottles littering the counters before.  When my sister had Lyme she was on multiple antibiotics, medicines and supplements.  She would take upwards of 60 pills a day. Total craziness.

When I found out I had Lyme, I knew I didn’t want to do antibiotics.  I respect and believe there is a place for their use, but I know they aren’t for me.  My sister feels that the antibiotics mostly did lasting harm, and that it wasn’t until she focused on more holistic methods and emotional healing that she began to get better.  There are a lot of mixed opinions on the use of antibiotics in general, as well as the use of them to treat Lyme.  From my perspective (and I’m certainly not a doctor- this is just my opinion and hope I don’t offend anyone- and I could be totally wrong!) I see using antibiotics to treat Lyme as similar to using chemo to treat cancer.  Yes, the chemo might kill cancer cells, but it also kills everything else.  Yes, the antibiotics may kill some of the Lyme, but they also kill off a ton of good stuff and when we are already in such a weakened state, we need to hold on to all the good stuff that we can!

I am already very fragile digestive wise, and after my 10-day experience on an antibiotic for strep, there is no way I am touching antibiotics again unless I am at the end of my rope.  For me it makes more sense to try to pinpoint and address the issues that made me susceptible to Lyme in the first place.  I have a friend who has been bitten by ticks *numerous* times and he is incredibly vibrant and well.  The fact is, there can be Lyme spirochetes in the body and the individual can be perfectly healthy.  Lyme bacteria has been found in 15-million-year-old tick fossils and has likely been around for ages (though I am also a bit of conspiracy theorist and totally believe Lyme could be government created biowarfare!)-the issue now seems to be that instead of existing in harmony with it our bodies are being overtaken by it.  I think this links into suppressed immune systems caused by things such as genetic mutations, vaccinations (or the toxic ingredients in them), mold, poor diet, GMO’s, environmental toxins etc.

So, for me it is about looking at how my system is vulnerable and trying to find ways to fully support it overall as well as finding ways to kill the Lyme while doing as little damage to my body as possible.

My LLMD started me on protocol drawing from Buhner Healing Lyme– I have been on it for a little over two months now. When I first started on it, I was still living in a moldy environment so it was hard to tell if I was herxing or just reacting to the mold.  Since moving to mold-free environment (which has proven SO hard to find here in the Bay Area, ick!) I started to see improvements.  However, I was then exposed to mold in someone else’s house and experienced a major setback. Now I seem to just be maintaining.  I have ‘good days’ and bad days as always, but I now have a consistent overall sort of muted feeling- like dullness.  It is hard to describe but it hangs over me, and makes it so I feel like I am never truly living :/

The protocol I am currently on involves taking the following:

  • Red Root for Lymph Support
  • Green Dragon Botanicals LB Core Protocol (this is a blend of the herbs recommended by Buhner including Japanese Knotweed root, Cat’s Claw vine bark, Andrographis herb, Sarsaparilla root, and Dandelion herb)  These are some of the major hitters recommended for dealing with Lyme.
  • Celandine for gallbladder support
  • Detox powder and charcoal

I am also taking probiotics, magnesium, krill oil, fermented cod liver oil, methlyB-vitamins, ginger, turmeric, collagen, bee pollen/propolis, glutathione, digestive enzymes, l-glutamine and a few other things thrown in there randomly such as l-tryptophan for mood.

I know this protocol is helping, and definitely doing SOMETHING, but I don’t know MUCH of WHAT it is doing.  I don’t know if it is enough.  I don’t know how to tell if I am improving because I forget what healthy feels like- I just get used to pushing myself to function and my current state becomes my new normal.  I don’t know how long it will take.  This is all part of Lyme. There is no ‘quick-fix.’ It is a slow process, and involves a ton of patience and trial and error.  It is such a tricky thing to monitor.  Even if you have a negative test after a few months of treatment, it could easily be a false negative, or Lyme could be in hiding.  There is a lot of uncertainty.

I believe the Buhner Lyme protocol is a good one, from everything I have read.  However, I am ready to try something else, which is where essential oils come in.                                               images (1)

I have always loved essential oils for aromatherapy and cleaning but had never considered the possibility of using them for Lyme.  A few weeks back I was using some drops of peppermint essential oil in my water to soothe my stomach and I had my ‘aha!’ moment.  I thought, “If peppermint essential oil works so well and feels so powerful, perhaps there are other oils I could use..and perhaps they could work for Lyme!”

I started googling away and reading everything I could find on it.  I found that there are many different protocols using essential oils to address Lyme, and that oils such as oregano and thyme are just as powerful, if not more so, than conventional antibiotics.  I also learned that essential oils can tackle all of the co-infections, are growth inhibiting to Lyme, and can break down biofilms.  Oils such as cinnamon and cassia also work to cut off the communication pathways between the bacteria.

I told my sister about everything I was reading, and how drawn I was feeling to the essential oils.  She told me that she had a close friend who had Lyme and had gone off antibiotics and begun treating herself with oils instead and was now doing far better.  This friend also had begun working for doTERRA (a great essential oil company) after her success using the oils and so we got in touch.  She was able to link me up with some very great resources, one of which being this video:

The video is a bit long, but is a great watch and incredibly informative.  I ordered my oils and supplements and am beginning the essential oil protocol as soon as they come in the mail.

The treatment will consist of rotating three protocols and of doing 2 weeks on and 2 weeks off of ‘antibiotic’ (aka natural antibiotics) treatment.  I’ve been reading that it is essential with Lyme to change up the treatment as the bacteria are incredibly intelligent and can adapt and find ways around herbs and antibiotics- so you have to surprise them every now and again with something new.  During the two weeks off you are not taking anything to actively kill the Lyme, but rather loading up on things such as probiotics and nutrients and focusing on continuing to detox.

As I mentioned, there are varying essential oil protocols for Lyme- if you search around you can find them.  There also is a closed Facebook group called My Essential Oil Lyme Journey and you can request to be added.  On there they offer files with protocols and recommendations (it is a Christian-based page so lots of talk about God- personally I am not religious but the group is still helpful to me).

I am planning to follow the protocols recommended in the video above- you can find them outlined at 1:40 in the video.

  • The first protocol I will start with is Dr. Hill’s protocol which entails using oregano, melissa, patchouli, frankincense, cassia, clove, cinnamon internally (you put the oils into capsules together).  I will probably start at a small dose and go from there in order to avoid herxing.
  • The second protocol with involve taking doTERRA’s Gx Assist capsules which include: Oregano, melalueca, lemon, lemongrass, peppermint, and thyme oils.
  • The third protocol involves taking doTERRA’s On Guard Plus which contains:  Wild orange, clove, cinnamon, eucalyptus and rosemary oils

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I am feeling so drawn to the essential oils and really hopeful.  I have had moments of doubt though too.  This morning I was feeling unsure, but then I had a phone consult with a local doctor about IV therapy and discovered she is Lyme literate and when I told her I was going to start using essential oils to treat the Lyme she responded with positivity and enthusiasm.  She said she has had many patients use essential oil protocols for Lyme and seen amazing results.  This gave me encouragement and I am meeting with her next week to get started on my IV treatments.  My current doctor has been absolutely amazing, but I’m thinking I might be making a switch to this new doctor soon…. we’ll see!

I think a big part of treating Lyme involves getting in-tune with your body and learning to listen to and trust yourself.  That is what I am trying to do and I hope it proves to work in my favor (I have a good feeling!)

As with so many Lyme treatments, it is hard to know what will happen.  Everyone is so different and it never seems easy to find conclusive results on the success of any protocol.  I’m going out on a limb here and hoping this will greatly help my body to recover.  I will post along the way information about what I am taking as well as what I am doing diet-wise and to address the mold…and how I am feeling.  It’s sort of like I am the lab rat AND the researcher…so we’ll see!

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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