My Big Book of Lyme Recovery


How Did I Recover From Lyme Disease?

This is a question I’m getting a lot of, lately. There are so many horrific Lyme stories online, and they are all true, but there are also stories of recovery that can workout in the end: like mine.

I’m not the only one who has recovered from Lyme, despite having battled it for years, but there are so few Lyme patients telling their stories of recovery, and I think it’s so important to let people know that there is hope — recovery is possible.

Through this blazingly detailed article, I describe what my 8-year experience with Lyme was like — how it affected my body, and how I found treatment — in hopes that it will help you, or someone that you know, reach recovery as well. And, to be completely honest, I want to get it all down on virtual paper before I forget the crazy quest I was on to get my health back.

Important — I do not believe that there is a ‘one-treatment-fits-all’ approach to treating Lyme disease. The treatments that I discuss in this article are purely based on what worked for me. This is a personal article intended to provide information and ideas, only. It is not a doctrine, and I am not making any claims that my treatment protocol is more relevant or useful than others. I just want to provide positive information and give HOPE that recovery is possible.

Heads-up — I won’t be listing all of the medications that I was on because my Lyme literate doctor (LLD) requested that I don’t, since all Lyme cases are unique, and each patient requires an individualized treatment protocol, and I totally agree with that.

My Experience Recovering from Lyme Disease

I had Lyme disease (a bacterial infection) and Babesiosis (a parasitic infection). Both infections were contracted from the bite of an infected tick.

I never saw the tick, nor did I experience a bull’s-eye rash. It took me 5-years to get a diagnosis, received through a Western Blot blood test requisitioned through my specialist, a hematological pathologist (IgG, IgM, and IFA tests were all positive to Center for Disease Control (CDC) standards).

I’m going to go through all of the treatments I did, even before my diagnosis because some of them really helped (even though I didn’t know what was wrong with me at the time). I’ll also include the treatments that didn’t work for me.

[There is a treatment summary at the end of the article.]


If you have Lyme disease, and you would like to receive my free 8-part email series on the best strategies that I used to support my body during treatment, click the link…


I think the best place to start is the beginning (obviously).

But, first, a little background…

My Lyme Life: The First 5-Years

In May 2006 I became really sick; so sick that I was initially house-bound for 7-months; I was intensely exhausted; I had hot pain in my muscles and joints; my balance was off, and I couldn’t walk, easily; I was mentally confused, and I went in and out of panic attacks every day (I had never had issues with anxiety before).

Five days before, I had just participated in the Sporting Life 10K — an annual 10km race through my hometown, Toronto. I was running with my friend, Maria; we were training for the Chicago marathon. (A race I didn’t make it to, but Maria finished it!)

Up to that point, my training was not going well. I felt tired, and I kept getting these brief episodes of vertigo while I was running. Even though I was going to the gym 5-days a week, and running every other day, I thought that I was just out-of-shape and needed to train more. Ugh, how stupid is that?

On the day of the 10K I wasn’t feeling great, but the crowds really energized me, and I had such an incredible time running — it took me 60-minutes to finish.

But, the next day, my body felt like it was on fire. My muscles hurt way more than they ever had post-workout. This is really odd since I was an extremely active person:

  • I went to the gym 5-days a week, as I’d done for 8-years.
  • I ran every other day for 45 minutes…working my way up to 60-minutes.
  • I worked 40-hours a week in graduate school.
  • I was also a teaching assistant.

My life was busy, and I loved it. Physical activity was nothing new in my life. Running for 1-hour wasn’t a strenuous task.

But, in May of 2006, something changed inside of my body, and it didn’t feel right.

By the third day after the race, I felt like I was off-balance. My head was swimming; I felt nauseous; and when I laid down to rest, my right leg would jerk backward from the hip, involuntarily, every couple of minutes. It was hard to fall asleep because of that.

By the 5th day, I was feeling incredibly tired, but I had to go into work to finish something up. While I was driving on the highway, the right side of my body suddenly went numb, and I went into vertigo. I was having a hard time controlling the car, so I went into my first panic attack, ever.

I got off the highway and stopped at the first place I saw, a gas station. I staggered in, unable to walk straight. The attendant called 911. An ambulance took me to the emergency room.

I wasn’t seen by a physician. I was visited, instead, by a social worker, who told me that I just had a panic attack. “Go have a cup a tea and relax”, was all she had to say.

After 3-hours, the right side of my body was still numb, and I had a massive headache. I called a cab to take me back to my car, and I drove home.

I got into bed, and proceeded to be house-bound for 7-months, unless my husband was with me to help me get around.

Here’s what my Lyme symptoms were for the first year:

  • Mental confusion (just for the first week): slow thinking, slow understanding.
  • Incredible fatigue.
  • Severe, firery pain in my muscles and joints.
  • Difficulty thinking and having a conversation (for the first 7-months).
  • Slow cognition.
  • Nightmares.
  • Constant panic attacks & paranoia.
  • Numbness across the right side of my face.
  • Breathlessness or out of breath while sitting.
  • A crushing sensation across my chest.
  • Off-balance and difficulty walking.
  • irregular heart rate: erratic with extra beats.
  • Involuntary jerking movements of my right hip muscles during rest.
  • Lower left abdominal pain, swollen tongue, and itchy mouth.

Within the first week, I went to see my family doctor. He did a blood panel to see if anything was wrong. The test came back negative, so he said that there was nothing wrong with me.

5-months go by…I move from my bed to my couch, every day. I don’t go to work, or out to see my family & friends. I can’t function by myself.

I started to really worry that I was going to lose my doctoral scholarship — my only source of income. I was in my first year of my Ph.D. in neuroscience.

So, I made an appointment to see a Naturopathic doctor. She say that I probably have candida. I do a 9-week candida cleanse (sugar-free diet with anti-candida supplements). Nothing changes. I stop seeing her.

I secure the help of two medical doctors who are also psychologists (yes, two!). One for general psychotherapy, and the other for cognitive behavioural therapy. I find it very helpful to talk about how scary it is to lose control of my body. I see them both, once a week for one-year: since my overall health is not improving, one recommends that I consult a Chronic Fatigue Syndrome (CFS) specialist.

My First Year of Treatment (Before Diagnosis)

By month 7 I’m desperate to find a way to get back to work. My only source of income is my graduate school scholarship. My supervisor is extremely caring and helpful; he understands that I’m too sick to get to work. But, our annual neuroscience conference is rapidly approaching and I have to submit my scientific abstract so that I can present my work at the conference. (No…I had no idea how I was going to get to that conference in San Diego, California!)

So, I call the College of Naturopaths of Ontario (CONO), hunting for a name of a Naturopathic Doctor (ND) who specializes in IV vitamins — this is a naturopathic specialty, and few NDs are specialized. The CONO is no help, so I contact Smith’s Pharmacy in Toronto: the pharmacy that provides the vitamins used in IVs. They give me the name of an ND: Dr. Jennifer Glazer.

During my first appointment with Dr. Glazer, we do a battery of tests. I have no idea what is wrong with me, so we have to start from the ground up.

Tests Done In the First 7-Months

Blood Tests

  • Metametrix amino acid profile
  • Metametrix Comprehensive profile
    • testing for nutrient markers, metabolism, cell regulation, detoxification, yeast & bacteria.


  • Organix Comprehensive Profile
    • testing for nutrient markers, metabolism, cell regulation, detoxification, yeast & bacteria.
  • Doctor’s Data 24-hour Urine Toxic Metal Profile

Saliva Test

  • Adrenal stress profile

Stool Analysis

  • Doctor’s Data Comprehensive Stool Analysis and Parasitology.

My Decision To Go Gluten-Free

I wasn’t told to go gluten-free, but I noticed that my tongue was swollen all the time, the inside of my mouth was itchy, and I had daily, aggravating lower left abdominal pain that I had had for the last 3-years.

I did an experiment where I eliminated all glutinous foods: wheat, barely, contaminated oats, and rye, and within one week, my tongue swelling decreased, the mouth itching disappeared, and my gut pain reduced by 50%. The pain didn’t go away entirely, but overall, those 3 symptoms improved.

I remain gluten-free to this day.

Intravenous Vitamins

Based on my test results, Dr. Glazer chose the appropriate supplements & vitamins to put into the IV bag.

Receiving IV vitamins is a very powerful treatment because it allows your body to receive the nutrients that it needs without having to absorb the vitamins and nutrients through the gut. It also allows you to receive massive doses of vitamins and supplements: beyond the dose that you would be able to consume orally.

Here’s what went into my IV bag:

  • Vitamin C
  • Vitamins B6, B5, and B3
  • Magnesium
  • Glutathione

** These vitamins and supplements were chosen for me based on my test results.

Intravenous Treatment Results

I was in very rough shape when I started to receive IV vitamins, but I can’t recommend them enough to support your body during Lyme disease recovery. It isn’t a method to kill the bacteria or co-infections; it’s just a way to help stabilize your body, and to make it stronger, so that you don’t physiologically fall apart completely.

In addition to IV treatment, I was also taking copious amounts of vitamins and supplements, orally. My diet was completely overhauled: to this day, I only eat chemical-free, real-food.

I went for IV treatment twice per week for one year, then once a week for another year. It helped me to return to work (3/4 time). It helped me to stabilize my energy level and cognition. I was able to take my 8-hour written comprehensive doctoral exam, my 3-hour oral examination, and travel to my yearly neuroscience conference.

I was still in rough shape, my energy level was only enough to stay awake for work. My pain level persisted; my balance was still off; I couldn’t drive; I only took the bus; I didn’t socialize at all. I only had enough energy to do my graduate work.

I was just keeping my nose above the water.

Summary of Treatment for the First Year (pre-diagnosis)

  • IV vitamins (helped a great deal)
  • Junkfood elimination (completely necessary)
  • Candida cleanse (didn’t do anything)
  • Oral supplements (helped a lot)
  • Gluten-free diet (helped a lot)

If you have Lyme disease, and you would like to receive my free 8-part email series on the best strategies that I used to support my body during treatment, click the link…

Treatment Starting 2-Years In (Pre-Diagnosis)

By 2-years into being so sick, I was only stabilized by IV vitamins. My major symptoms persisted.

I never went back to my original family doctor because he was convinced that there was nothing wrong with me. My mother was very concerned (as all mothers would be), so she begged her friend, a family doctor, to take on my case.

Again, he did blood work that came up with no answers. But, he was compassionate enough to say that he didn’t know what was going on with my health, but he was willing to do what he could for me. And, that started the parade from specialist to specialist.

I saw endocrinologists, gastroenterologists, internal medicine specialists, and neurologists. I had vampirous blood tests, CT scans, echocardiograms, and MRIs.

A pus filled cysts was found in my right maxillary sinus (a cavity behind our cheek bone). It was surgically removed; I can now breath out of my right nostril again. Bonus! But, my symptoms persisted.

I asked my new family doctor to refer me to a Chronic Fatigue Syndrome specialist: it took 1-year to get an appointment. (Much of my time was wasted waiting for doctor’s appointments. Most waiting lists here are 3 months to over a year.)

Here’s what my Lyme symptoms were for the second year (new ones in bold/ones that were better in italics):

  • Incredible fatigue
  • Severe, firery pain in my muscles and joints
  • Difficulty thinking and having a conversation
  • Slow cognition
  • Nightmares
  • Constant panic attacks & paranoia
  • Numbness across the right side of my face
  • Breathless or out of breath while sitting
  • A crushing sensation across my chest
  • Off-balance and difficulty walking
  • irregular heart rate: erratic with extra beats
  • Involuntary jerking movements on my right hip muscles during rest.
  • Lower left abdominal pain, swollen tongue, itchy mouth
  • right eye vision is cloudy
  • right eyeball and eyelid is numb
  • cannot move my right eyebrow
  • joint pain escalates in hand & finger joints and spine
  • muscles in right hand and arm are weak. Hard to hold a pen for long
  • fasciculations in my thigh muscles when resting
  • muscles in legs fatigue fast and are weak
  • constant pain at the base of my skull
  • drenching night-sweats
  • constantly cold

I was first diagnosed with Chronic Fatigue Syndrome (CFS)

After waiting a whole year, I finally got an appointment with a CFS specialist, who happened to be a hematological pathologist (a blood specialist).

I go through another battery of blood tests looking for everything and anything under the sun; everything comes back negative. (3-years later, I find out that I was tested for Lyme, but the Canadian ELISA test came back negative. So, I lost my chance to be diagnosed at year 2-3).

Since, my tests come back negative, I’m diagnosed with CFS based on my signs and symptoms.

I see my CFS specialist every 3-months, for 3-years. I also see the Naturopathic physician that works with her.

There is no specific treatment for CFS other than “pacing” and taking vitamins and supplements.

I stopped getting IV vitamins after 2-years because it was $170 per treatment. I was going 1-2 times per week for 2-years, so you do the math…I couldn’t afford to go into debt like that anymore because by 2009, I was graduating with my Ph.D. I was about to lose my only source of income.

Summary of Treatment from years 2.5-5

  • No more IV vitamins (I stopped at year 2.5 since it was so expensive)
  • Oral vitamins and supplements (recommended by ND who worked with my CFS specialist)
  • Pacing & tracking my symptoms (the only treatment provided for CFS)
  • Gluten-free diet

Conditions I Was Diagnosed With Prior to Lyme

In the first 2-3 years, I saw 8 different specialists and a couple of Naturopaths of varying disciplines. Here’s what they thought I had:

  • Depression — I could barely function, and most doctors just dismissed me as having depression without administering any tests. I asked, “Don’t I have to have depressive thoughts in order to have depression? I still want to do everything…I have such a vibrant life. But, now I’m too sick to function? How can this be depression?” I got no response.
  • Nothing — This was the second most popular. Since my general blood panels always came back negative, I was always told that nothing was wrong.
  • Candida — this can be a usual diagnosis from a naturopath.
  • Burn Out — Apparently, my body gave out as a result of all my university studies. (Rolling my eyes.)
  • Chronic Fatigue Syndrome — the category you’re lumped into if a diagnosis does not arrive.

When I Lost the Ability To Work

I contracted Lyme in May of 2006; by October of 2009 — 3 years later — I could no longer work. My body was spent.

I had fought so hard to get my Ph.D., and I successfully finished my dissertation September of 2009.

Getting my Ph.D. was one of the most gratifying and special moments of my life. And, I still can’t believe that I finished it within 4-years — especially being as sick as I was.

But, when I finished, I gave my body much needed rest and I wasn’t able to rally myself to start my career.

One of the Biggest Emotional Tolls

The day that I realized that I could no longer work, I could barely cope with my day to day existence, was so incredibly devastating.

I had worked so hard to get my Ph.D., but I wasn’t well enough to start any sort of career.

And, this was still at a time when I didn’t have a diagnosis. I graduated in 2009, but I didn’t find out I had Lyme until 2011.

I Became a Shut In (Agoraphobic)

By 2009, I couldn’t leave my house alone anymore. I completely lost all independence. I relied on my husband and mother, who I owe my recovery to.

A part of my Lyme and Babesia symptoms included intense panic, which was unrelenting. It was hard to be alone in my own house.

I tried everything under the sun to help my illogical panic level. And, it struck me as so odd that I was constantly panicked.

I was never an anxious person before Lyme. I was fiercely independent; I even travelled the world, alone. I wasn’t intimidated by anything or anyone. I was a type A workaholic who went after any goal I set.

So, living with panic has been awful. I became a prisoner in my own house.

Here are the treatments I tried to help my panic level

  • IV vitamins (really helped, but only kept it at bay…I was able to get through grad school.)
  • Oral vitamins and supplements (didn’t work.)
  • Avoid caffeine (This is helpful.)
  • Hypnosis (Did it 3 times. No change.)
  • Scream therapy (Yep, I’ll try anything…didn’t work.)
  • Psychotherapy (helps a lot, but hard to get to on my own.)
  • Cognitive behavioral & exposure therapy (didn’t help.)
  • Antidepressant SSRI medication (couldn’t take it, too many serious side effects)
  • Antidepressant dopaminergic medication (helped by 40%: no longer panicked at home, but can’t leave the house alone, easily. I waited 8-years to ask for medical treatment for anxiety; I shouldn’t have waited so long — perhaps my panic level wouldn’t be as strong and disabling as it is now.)
  • Ignoring it, and psyching myself up (Nope. Doesn’t work.)
  • Meditation (doesn’t help in the heat of a panic attack.)
  • Yoga (I wasn’t able to exercise at all until 2014. I started with Hatha yoga then Vinayssa — both did not affect my panic level.)
  • Intense exercise (by January of 2015 I could exercise, vigorously, for 30-mins 4-5 days per week. I don’t find that intense exercise decreases my panic level…but it is making my body strong again!)
  • Homeopathic tinctures: Rescue Remedy, PsyStabil by Pekana, and passionflower extract. (Not helpful.)
  • Tapping (Can’t use in the heat of a panic attack.)

I’m not formally diagnosed, but I’m pretty sure that Lyme made me agoraphobic.

I Waited Too Long to Get Help With Anxiety

I’m going to be brief about this, but it’s one of the most important things I can possibility write about in this article — mental health.

Panic induced by Lyme Disease is common. I don’t know what the mechanism is, but it definitely exists. (I would LOVE to know how Lyme alters brain function.) Most Lyme patients are panicked.

It was one of the first horrible symptoms I had, and the initial panic attacks were unrelenting for the first 2-weeks. Hour after hour I kept spinning into a panic attack, as I lay on my couch hugging myself, wishing I could just fall asleep.

My panic attacks are accompanied by vertigo, and they affected my ability to:

  • Drive.
  • Walk outside.
  • Leave my house alone.
  • Be in my house feeling comfortable and safe.

And, here’s the awful thing…I never asked for help from my doctors to help with the disabling panic I was suffering until 2015 (8-years later)…and here’s why…

There is such an awful stigma around taking antidepressant drugs. I’m surrounded by friends, family, and acquaintances — hey even the media! — who are against or highly opinionated about people taking antidepressants.

I didn’t want to disappoint anyone. I didn’t want to be embarrassed that I needed help like that. So, I tried anything and everything under the sun to help my anxiety level — all but antidepressants.

I was completely influenced by the opposition, and the result was that I suffered for 8-years: eventually losing the ability to leave my house and becoming a shut-in.

I wish that I had been stronger to make-up my own mind because the antidepressant that I take now (Wellbutrin) cut my panic level by at least 40% — I now feel safe at home, relaxed, happy, joyful. I’m not on edge waiting for another panic attack. It doesn’t block me from feeling (which I was afraid of): I still laugh and cry like my normal self.

Medication helped me to have the ability to leave my house alone. At this point (Sept. 2016), I can walk to multiple shops in my neightbourhood and go for walks outside. I have about a 1 km radius of freedom without anxiety.

I’m now working on expanding my ability to function happily and alone, on my own…further away from my house. And, I wouldn’t have been able to do it without the proper medication to help me.

So, if your mental health is disabling you, please seek help. You don’t have to feel the way that you do. There is a way to feel better; you just need the right professional help and the courage to make-up your mind about what is right for you and your own health.

P.S. I also tried two SSRI drugs, but I wasn’t able to take them; I experienced too many side effects from them. The point is, I had to find the right medication for me, and you can do the same thing as well. Just have patience, willingness, and curiosity to find a solution for yourself.

The Year I Finally Got Diagnosed: 5-Years Later

I found out that I had Lyme purely by dumb luck.

I was sitting in my CFS specialist’s office; I was there for my quarterly appointment. As I waited, I over heard a conversation between two women.

One woman was describing the documentary “Under Our Skin”: a documentary about what it’s like to have Lyme Disease in America. She said that thanks to that documentary, she found out that she had Lyme, herself, rather than multiple sclerosis (MS), which she was diagnosed with a decade earlier.

She said that she had been wheelchair bound for years, unable to walk. She was also unable to speak as well; her facial muscles just wouldn’t allow her to talk.

But, when I saw her, she was walking and talking. She said that she got treatment for Lyme Disease, and is now back to living rather than existing.

She went on to describe what Lyme is and what the symptoms are like because, just like me, the woman she was speaking to had never heard of Lyme before.

When I went into my appointment, I told my doctor about the conversation I just heard, and I asked to be tested. All I wanted to do was cross one more possibility off my list. I was still searching for the cause of my illness.

“When your illness is a bit of a mystery and you can’t find a diagnosis easily, it’s best to keep testing…you never know; you might stumble upon your answer.”

My doctor looked back through my chart, and she said that I was tested for Lyme 3-years ago, and the test came back negative.

I went home. Watched the documentary Under Our Skin, and did some research of my own. I discovered that there was an issue with the Canadian Lyme test (the ELISA): false negatives could happen. So, I found a U.S. based laboratory where I could get a more reliable Western Blot blood test through a company called IGENEX in California — they specialize in Lyme blood tests.

I ordered a test kit from IGENEX, myself, but I had to have my doctor sign the requisition form. IGENEX will only send results to a trained medical professional.

So, I showed up at my CFS specialist’s office, unannounced, and I waited 3-hours to get my doctor, between appointments, to sign the requisition form.

She advised me not to get the test done. She said that, “you won’t find anything”. I said that I just wanted to cross this possibility off my list.

The test cost around $900. After having my blood drawn (that was only $25), I packed my blood and plasma samples in the test kit box, and couriered it ($45) via FEDEX back to IGENEX.

My doctor went on vacation, so I had to wait a month for my results.

I got a call a month later; my doctor wanted me to come in to discuss my test results. Since she asked me to come in, I knew that there was something that came back positive. I had never had a doctor here in Canada ask to see me just to report negative results.

I showed up for my appointment, and she showed me the paper work. My Western Blot blood test, which included 3 separate tests, all came back positive to Center for Disease Control (CDC) standards. My IgG, IgM, and IFA tests were all positive.

I officially had my answer…I only had to wait 5-years to get it.

What I was Advised to do After my Diagnosis

My CFS specialist didn’t act surprised that my tests came back positive. All she said was that she wouldn’t be able to treat me…which I already knew.

You see, here in Canada, doctors are only allowed to treat Lyme disease with antibiotics for 30-days. A doctor can get into serious trouble, even lose their medical license, if they are caught treating LD beyond 30-days.

Canada is not the only country with these archaic rules. The same issue is faced in America, Australia, and across Europe.

There are two warring medical factions: one side says Lyme is killed in 30-days of antibiotic treatment; the other side says some patients may require more treatment, potentially for years if the patient’s symptoms persist.

The medical treatment guidelines in Canada state that 30-days is sufficient, so my doctor recommended that I immediately go to the United States for treatment. To a state that has laws to protect doctors who treatment Lyme patients beyond 30-days.

There is a mass exodus of Canadian Lyme patients who must go to the United States for treatment

I think it’s horrifically criminal that Canadian Lyme patients cannot get treatment in their own country. We have a socialistic healthcare system here, that I pay into, but I have no access to.

My First 3-months of Lyme Treatment

When I was first diagnosed with Lyme in 2011, I contacted the Canadian Lyme Disease Foundation (CanLyme) to see if anyone had a recommendation of who I should see.

I was given the name of an infectious disease (ID) specialist in Toronto who was seeing patients, and treating beyond 30-days. I thought, ‘what luck!’, I don’t have to travel far. Well…that joy didn’t last long.

I waited 5-months for an appointment. When I started to see the ID specialist, he did a slew of blood tests for every infectious disease under the sun; again, the Canadian ELISA lyme test came back negative. But I had the IGENEX Western Blot test and signs and symptoms indicative of Lyme disease, so I was put on 2 different antibiotics to treat the Lyme infection.

On month 3, I was called into his office. He said that the College of Physicians and Surgeons of Ontario (his governing board) found out that he was treating Lyme patients beyond 30-days; he was advised to stop that practice or face disciplinary action and potentially lose his license.

Understandably, he dropped all of his Lyme patients within 2-weeks.

Adventures in Hyperbaric Oxygen Therapy (HBOT)

When I started to receive antibiotic treatment from the infectious disease specialist in Toronto, I had heard that some Lyme patients were finding relief through Hyperbaric Oxygen Therapy (HBOT).

HBOT is a procedure where you are sealed within a glass enclosed structure that subjects you to increased atmospheric pressure and increased levels of oxygen. The greater the atmospheric pressure, the more oxygen that enters into your body.

Oxygen is healing to the body. It can decrease inflammation and help tissues to mend. Some think that high levels of oxygen can kill Lyme bacteria, but there is no scientific data to support that claim.

Even though HBOT is an extremely expensive therapy, I decided to try it anyway, in hopes that it would help me heal faster.

HBOT & Lyme Disease

In Toronto, one hour of HBOT therapy in a private clinic is $200, and to reap the benefits of HBOT you need to do at least 40 1-hour treatments Monday to Friday, every day, until you hit 40 treatments. That’s 8 solid weeks of going for treatment Monday to Friday. So, that comes to $8000 and a crazy time commitment. Holy crap, right?

Now, to cut the cost in half, I agreed to have a ‘dive partner’. This means that I was placed in the small enclosed structure with another person. We were crammed together, side-by-side while laying down.

It certainly isn’t the most ideal situation to be in especially if you’re sick.

My dive partner talked a lot. She was in treatment for something totally different; something that didn’t make her as sick as I was, and it was hard to show up for treatment 5-days a week for 8-weeks. But, at least I saved 50%…

HBOT Treatment Results

HBOT was the most expensive treatment experiment I did. And, if I had to do things all over again (which I hope never happens)…I would either avoid doing HBOT all together or place it at the very end of treatment, when you’re pretty much symptom free.

It wasn’t a treatment that improved my condition.

For me, the only thing that truly pulled me to recovery was antibiotic and antiparasitic medical treatment (to target my Lyme and Babesia infections), along with IV vitamins, a clean diet, gluten-free & sugar-free living, supplements, sleep, and a whole hell of a lot of patience.

I wouldn’t recommend HBOT unless you want to do a very expensive treatment experiment like I did.

The Moment I Left Canada for Treatment in the United States

The same day that I was dropped by my infectious disease specialist in Toronto, I was back in contact with the Canadian Lyme Disease Foundation (CanLyme). They sent me a list of potential Lyme Literate Doctors (LLD) in the United States.

I chose Dr. Maureen McShane for 5 reasons:

  • She had Lyme & Babesia, herself, so she knows what we are up against.
  • She’s high energy & highly intelligent. I don’t want any doctor where I have to do research on my own. I was so tired of that.
  • She is located 7-hours from me by car.
  • She came highly recommended.
  • She treats Lyme, aggressively, and according to ILADS standards (more about ILADS below).

** It took me 4-months to get an appointment with her. I started seeing her in August of 2011. **

How My Treatment Changed in the United States vs. Canada

My treatment was vastly different once I started seeing a Lyme literate doctor in the United States. For the first 3-months of my medical treatment, when I was seeing the infectious disease specialist in Toronto, Canada, I was put on 2 different antibiotics. He was targeting the Lyme infection, only, without taking into consideration that I may have a co-infection as well (which I did: Babesia).

Remember…ticks carry other infections rather than just Lyme bacteria. They also carry other tick borne illnesses like:

  • Babesia (parasite)
  • Ehrlichiosis/Anaplasmosis (bacteria)
  • Bartonella (bacteria)
  • Colorado tick fever (virus)
  • Mycoplasma
  • Powassan virus
  • Q fever (bacteria)
  • Rocky Mountain spotted fever (bacteria)
  • Tick Borne paralysis (toxin)
  • Tick Borne relapsing fever (bacteria)
  • Tularemia (bacteria)

It turns out that I also had a parasitic infection called Babesiosis, and no amount of antibiotics would get rid of that…I needed treatment with antiparasitic drugs as well.

So, there’s one among many blessings of losing  my medical care in Canada:

  • I wasn’t being treated aggressively enough.
  • I wasn’t being treated corrected.

Here are my symptoms when I arrived in the U.S. for treatment (new ones in bold/ones that were better in italics):

  • Incredible fatigue.
  • Severe, firery pain in my muscles and joints.
  • Difficulty thinking and having a conversation.
  • Slow cognition.
  • Nightmares.
  • Constant panic attacks & paranoia.
  • Numbness across the right side of my face.
  • Breathless or out of breath while sitting.
  • A crushing sensation across my chest.
  • Off-balance and difficulty walking.
  • irregular heart rate: erratic with extra beats.
  • Involuntary jerking movements on my right hip muscles during rest.
  • Lower left abdominal pain, swollen tongue, itchy mouth.
  • right eye vision is cloudy.
  • right eyeball and eyelid is numb.
  • cannot move my right eyebrow.
  • joint pain escalates in hand & finger joints and spine.
  • muscles in right hand and arm are weak. Hard to hold a pen for long.
  • fasciculations in my thigh muscles when resting.
  • muscles in legs fatigue fast and are weak.
  • constant pain at the base of my skull.
  • drenching night-sweats.
  • constantly cold.
  • pronounced pain in my hand joints and spine.
  • the surface of my skin felt like it was stinging.
  • involuntary movement of right leg and arm increased.
  • involuntary plantar flexion of each foot while standing. So every time I picked a foot up off the ground, my foot would involuntarily plantar flex. 
  • didn’t leave my house alone.

If you have Lyme disease, and you would like to receive my free 8-part email series on the best strategies that I used to support my body during treatment, click the link…

How Often Did I Go to the U.S.?

My Lyme specialist is in New York, a 7-hour drive away from where I live in Toronto. My husband would drive me to see her for an in-person appointment every 6-months. In between, I would have an appointment on the phone. So, appointments were every 3-months (two in-person, two on the phone).

Since she is an American doctor that means that Canadian Lyme patients need to purchase their medication in the U.S. One of my medications cost $1000 per month!

The Importance of Heavy Metal Detoxing (if you need to)

Dr. McShane recommended that I get tested for heavy metals, since heavy metal toxicity could hinder treatment progress.

I also wanted to return to having IV Vitamins, since they were so incredibly helpful, and it had been about 3-years since I did that sort of treatment.

I called my amazing ND, but it turned out that she had left her practice to raise her family. That was such a bummer! She was the most brilliant ND I had ever met.

She gave me a recommendation to see another Toronto-based ND who specialized in IV vitamins, his name is Dr. John Dempster.

We started with some heavy metal testing and general IV vitamins to support my Lyme and co-infection antibiotic treatment.

Heavy Metal Testing

To test for heavy metals in your body, you first need to order a urine test kit from a testing facility. My ND had the kits in his office. The kit contains collection instructions, a freezer pack, and a small plastic container.

The test procedure involves taking an oral chelator called DMSA (Dimercaptosuccinic acid), then collecting your urine for 24-hours (except for the first morning urination on the first day).

At the end of the day, you take a small sample of the urine, and place it in the small plastic container that comes with the collection kit. You then freeze the sample.

The next day, you FEDEX the sample to the testing facility.

My Heavy Metal Test Results

My test results revealed that I had high levels of lead, thallium, and cesium in my body. I’m not sure what cesium could do to my health, but lead and thallium can compromise the nervous system.

Heavy Metal Toxicity Treatment

There are a few ways that you can eliminate heavy metals from the body. My ND recommended the use of

  • Oral DMSA (Dimercaptosuccinic acid)
  • IV DMPS (2,3-Dimercapto-1-propanesulfonic acid)

The treatment lasted 3-months, and by the end of it, all heavy metal levels were down within acceptable ranges (determined by a second DMSA provoked urine test).

Heavy Metal Detox Treatment Results

I can’t say for sure that the treatment did anything overt to my overall Lyme symptoms. I did the treatment purely to as a supportive help to my treatment. I was willing to do whatever I need to to speed up my recovery, and I didn’t want the possibility of heavy metals getting in the way.

Kryptopyrroluria: What the Hell is That?

There are some conditions that predispose a person from detoxing efficiently or maintaining stabile concentrations of important vitamins and minerals within the body.

One such metabolic condition called Kryptopyrroluria/Pyroluria (KPU) is a metabolic disorder that causes an overproduction of chemicals called pyrroles, which are byproducts of hemoglobin synthesis.

These pyrroles bind with zinc and vitamin B6, then are excreted in the urine. Overtime, the body becomes deficient in zinc and B6.

Being deficient in zinc and B6 can cause serious symptoms and hinder Lyme treatment and recovery.

So, I decided to get tested.

Kryptopyrroluria Testing & Results

The test for KPU is quite simple; it’s just a 24-hour urine collection test that measures the concentration of pyrroles in the sample.

My test came back positive for KPU; I had a concentration of pyrroles above normal.

Treating Kryptopyrroluria

I was usually very diligent with treating any condition I tested positive for, except for KPU.

The treatment involves taking a high dose of zinc and B6 (to compensate for the physiological lose), along with other supplements to help control the condition. Supplements have to be taken for life, since the condition is potentially permanent.

I found the first 2-years of Lyme & Babesia treatment with antibiotics & antiparasitics to be quite stressful, and my body was so overwhelmed just by that treatment alone, so I decided to not treat the KPU.

Fortunately, I was able to reach recovery without treating my KPU, and I’m really thankful about that.

I never got around to actually having my zinc and B6 levels tested; you can do that through a blood test. That blood test would actually tell me if I was deficient in zinc and B6 despite having a high pyrrole level. I really should have done that right at the start, but again, treatment was difficult and this is the one thing that went by the wayside.

Adrenal Fatigue

The adrenal glands, located above each kidney, secrete a stress-related hormone called cortisol. Cortisol helps your body to deal with stress; it also helps to maintain your energy level, amongst other functions.

If your body is constantly under stress, than your adrenal glands can become comprised, and they end up secreting less and less cortisol. You end up feeling really tired, anxious, depressed, and sluggish.

Adrenal Gland Testing

I had my cortisol levels tested by a 4-point salivary test that measured my cortisol levels during 4 separate times of the day.

A normal cortisol level rises in the morning to help wake you up, and gradually tapers off throughout the day so that you can sleep in the evening.

My cortisol levels were abnormal: I had low cortisol levels in the morning; a peak cortisol level at 11am; followed by a drastic drop below normal by early afternoon. I didn’t have enough cortisol to keep me awake. This is what Adrenal Fatigue is.

Adrenal Fatigue Treatment

I found it hard to find a supplemental treatment for my adrenal fatigue because I couldn’t take adrenal support supplements: they didn’t make me feel well.

So, I concentrated on my usual regime of vitamins, minerals, and supplements, and a crazy amount of rest.

It took years…until 2015 to stabilize my adrenal function.

When Did I Start to Experience Results From Treatment?

This is a VERY important thing to talk about. Most people are under the impression that you can treat an illness and instantaneously feel better, and that is NOT the case with Lyme disease — especially if you’ve had it, untreated, for years.

I didn’t experience noticeable, “hey…I’m feeling a bit better”, results until 13 months into my U.S. based treatment.


That’s 13-months of aggressive medical treatment, where I’m taking a combination of 3-4 different antibiotic & antiparastic medications at the same time.

Recovering from Chronic Lyme and co-infections takes time…time…and more time.

Long Term Antibiotic Treatment vs. 30-Days Only

There are two opinions in the medical community about treatment length.

  1. One side believes that any Lyme infection can be cured with only 30-days of antibiotic treatment. It doesn’t matter how long you’ve had the infection, 30-days will work for everyone. This is the belief of the Infectious Disease Society of America (IDSA) who mandates the 30-day Lyme treatment guideline that doctors must follow (unless they are in a US State that allows doctors to treat Lyme longterm). Health Canada also adheres to the US based 30-day guidelines.
  2. On the other side of the argument, is the assertion that all patients are different, and each patient requires longer term treatment, if they require it to reach recovery. This treatment approach is supported by the International Lyme & Associative Diseases Society (ILADS), and American medical society.

The treatment I received adhered to the ILADS lyme treatment guidelines, which recommends longterm medical treatment for patients who require it.

There is no way I would have reached recovery with only 30-days of antibiotic treatment.

I am an example of many who required longterm medical treatment to reach recovery. My story is not unique; there are hundreds of other patients who have recovered from Lyme thanks to long term treatment.

How Did I Feel During Medical Treatment?

During the first 13-months of antibiotic/antiparasitic treatment I felt pretty worn out, super tired, lacked stamina, and my anxiety level increased.

I was told that I would get worse during the initial stage of treatment, since killing the Lyme bacteria can make you feel very unwell as your body excretes the dead bacteria. I didn’t know the initial stage would last so long.

Treating Lyme is no joke. I takes crazy commitment, lasting compliance, and patience.

It’s hard to give you a time line for when each symptom disappeared…

But, I had been very sick for 5-years prior to treatment, and it took me 13-months to notice a real change happening in how sick I felt.

How Long Was I Treated?

I was treated by the infectious disease specialist in Toronto for 3-months, and I was treated in the U.S. for 28-months.

So, I was medically treated for 31-months in total. That’s just under 3-years.

How Did I Avoid Medication Complications?

Side effects from medications are no joke. And, taking antibiotics and antiparasitics for as long as I did requires a certain approach…one that you can’t deviate from.

Some of the nasty and scary side effects that can happen when taking antibiotics include things like:

  • chronic diarreha
  • abdominal pain
  • bleeding in the stomach
  • yeast infections (oral, skin, vaginal)
  • c-difficile

To avoid the potential side effects, my doctor requires that all of her patients live completely sugar-free. If you don’t follow this diet, then she just doesn’t prescribe treatment.

What Does it Mean to Live Sugar-Free?

Living sugar-free as a Lyme patient taking antibiotics means that you don’t eat anything like

  • added sugar of any sort (no white sugar, honey, agave nectar, molasses, brown sugar, coconut sugar, etc.)
  • white products like white bread, white rice.
  • vegetables or grains like potatoes or corn.
  • all fruit except avocados, tomatoes, lemons, or limes.

I lived completely added sugar free for 2.5 years, including fruit free. When I stopped treatment in December 2013, I returned to eating fruit, potatoes, and corn, but I never returned to eating added sugar, white bread, or white rice.

Living sugar-free was like a revelation for my body. I felt so much better, stronger, and more awake without eating added sugar. And, I dropped 15 pounds, which is nice albeit irrelevant to recovery.

The Importance of Living Sugar Free

When I hear from fellow Lyme patients, many ask me how I was able to stay on treatment despite all the side effects from antibiotics.

I tell them I didn’t have any side effects because I prevented them through following a sugar-free diet.

Not all Lyme patients are told that they need to be sugar-free, and it’s a shame because too many patients stop treatment because they come up against too many side effects.

There is no way I would have been able to reach recovery without living completely sugar-free.

Now, don’t misunderstand…I didn’t live carbohydrate free. I restricted my carbohydrate consumption to complex carbohydrates, only. I avoided all simple carbohydrates that easily metabolize into glucose (sugar) in the body.

I still ate rustic grains and seeds like buckwheat, quinoa, chia, flax, brown rice, and millet.

I still ate lean meats from local farms, dairy, vegetables, and legumes.

I didn’t feel restricted because I found a way to enjoy sweet treats without eating sugar. I even have a 10 episode sugar-free cooking show on YouTube demonstrating how to make sugar-free chocolate bars, hot chocolate, and many more SF desserts.

Summary of treatment from years 5-8

  • Antibiotic & Antiparasitic medication (worked for me)
  • IV vitamins (worked to help support my treatment)
  • Oral supplements (totally necessary.)
  • Sugar-free diet (a MUST!)
  • B12 shots (really helpful to energy level)
  • Gluten-free diet (very helpful if you’re allergic to it.)
  • Allergy free diet (very helpful to avoid foods you’re allergic to.)
  • Heavy metal detox with Naturopath (to help with treatment)
  • Hyperbaric Oxygen Therapy (wouldn’t recommend it unless you have a lot of cash. And, if you’re going to do it, place the treatments at the end of your treatment not at the beginning.)

The Importance of Having a Super Qualified Doctor

There is nothing more important than having a super qualified doctor to treat you, if you’ve had Lyme Disease for years.

You need to be with someone who has a great deal of experience treating Lyme patients and the complexities that each patient presents with.

There is no way I would be recovered now if it wasn’t for my Lyme literate doctor. I owe my renewed health to her.

My doctor only treats Lyme patients, and her practice is full to capacity. She has extensive first-hand knowledge because she contracted the disease herself, and has spent years upon years treating complex cases.

Who should you see if you have Lyme? The best! It doesn’t matter where they are…go! Travel to them. Your recovery depends upon expert knowledge and experience.

The Day I Decided to Stop Treatment

Unfortunately, there is no blood test to definitely tell you if you have Lyme or if you’re cured. Usually, LLDs will treat patients until they are symptom free, or close to it.

I decided to stop treatment in December 2013, after 31-months of treatment, at a time when I was about 70% better.

I wasn’t sure if my lingering symptoms were from Lyme & Babesia, or from severe de-conditioning and persistent anxiety.

I took myself off of treatment purely as an experiment. I told myself that I would return to treatment if my symptoms began to escalate again.

Here are the symptoms I was left with after 31-months of treatment:

  • Mild muscle weakness, mainly in quadriceps, hamstrings, and shoulder area.
  • Soft muscles: very marshmallowy even when contracted.
  • Lack of energetic stamina
  • high anxiety/panic

Here are the symptoms that disappeared with treatment:

  • Incredible fatigue.
  • Severe, firery pain in my muscles and joints.
  • Difficulty thinking and having a conversation.
  • Slow cognition.
  • Nightmares.
  • Numbness across the right side of my face.
  • Breathless or out of breath while sitting.
  • A crushing sensation across my chest.
  • Off-balance and difficulty walking.
  • irregular heart rate: erratic with extra beats.
  • Involuntary jerking movements on my right hip muscles during rest.
  • Lower left abdominal pain, swollen tongue, itchy mouth.
  • right eye vision is cloudy.
  • right eyeball and eyelid is numb.
  • cannot move my right eyebrow.
  • muscles in right hand and arm are weak. Hard to hold a pen for long.
  • fasciculations in my thigh muscles when resting.
  • muscles in legs fatigue fast and are weak.
  • constant pain at the base of my skull.
  • drenching night-sweats.
  • constantly cold.
  • pronounced pain in my hand joints and spine.
  • the surface of my skin felt like it was stinging.
  • involuntary movement of right leg and arm increased.
  • involuntary plantar flexion of each foot while standing. So every time I picked a foot up off the ground, my foot would involuntarily plantar flex.

What Happened When I Stopped Treatment?

When I stopped treatment, I wanted to discover if my lingering muscle weakness and stamina issues were related to de-conditioning rather than Lyme. So, I started to exercise very gently, starting in January 2014, one month after stopping treatment.

It had been 8-years since I was able to exercise in any way beyond a 10-15 minute walk.

Needless to say, I started out extremely tentative and slow.

4-weeks after stopping treatment, I ate my first piece of fruit in 2.5 years — it was a mango, and it was glorious!

Post Treatment Workout Style 1

(6-months from January 2014 to July 2014)

The first type of exercise I did was Hatha Yoga: a slow, gentle yoga that focuses more on gentle stretches & muscle movements. I did Hatha Yoga, 3 times a week, for 30-45 minutes, for 6-months. I also took 20 minute walks twice a week with my neighbor.

I did Hatha Yoga at home by taking free classes on YouTube through channels like, Dr. Melissa West a fellow Canadian or Soft Music & Yoga.

Post Treatment Workout Style 2

(6-months from July to end of December 2014)

When Hatha Yoga started to become easier, I knew that I had to give my body more challenge. So, I leveled-up to Vinyassa Yoga: a more strenuous form of yoga that requires more balance and muscle strength.

Just like Hatha, I did Vinyassa Yoga at home, mainly using Lesley Fightmaster classes on her YouTube channel. Classes ranged from 20-45 minutes, 3-4 days a week.

I’m not going to lie; it was tough. I could barely do the muscle strength moves. I had no upper body strength at all — if you know what a chaturanga is…I hated them! I huffed and puffed, and rolled up into a heavy-breathing ball afterward, but over time, I started to get a lot stronger, and my muscles started to get bigger and way more toned.

It doesn’t matter how long you’ve been sick. It doesn’t matter how old you are. Your body is always trainable. You can build more endurance; you can make your muscles stronger; you can build a better body, anytime. It just takes consistency.

Post Treatment Workout Style 3

(Starting January 2015 to present. I started off with 3-days a week; now I’m doing 5-days a week.)

After 12-months of gentle than more challenging yoga, I felt that I was ready to really challenge my body. I wanted a form of exercise that was more dynamic. I wanted to really move.

Yoga is quite stationary, and I was so tired of being stationary — I had 9-years of it already, and I was ready to move on.

I love dance, particularly ballet and modern. I found a dance inspired workout system called Metamorphosis by Tracy Anderson. It comes in 4 different styles: I chose the Glutecentric program.

The program contains 9-levels of muscle sculpting classes: you move up a level every 10-days. There was also a 30-minute dance cardio workout.

When I started, I could barely get through the Level 1 muscle sculpting class: my muscles were so weak!! It took me 13 times in order to be able to do all the repetitions in Level 1.

But despite how hard the workouts were, my body was ok. I was incredibly sore, but I could handle it. I wasn’t getting a chronic fatigue reaction afterward.

I was so excited!

What my exercise regime is like now

At the time of writing this post, it is now September 2016. I have been working out using Tracy Anderson workout videos at home, 4-5 days a week for the last 20-months, and I feel so much better!

I don’t have any issues with my muscle strength or stamina anymore.

Recently, I’ve also thrown in some Ballet Beautiful workouts by Mary Helen Bowers, and I play tennis with my neighbor every Sunday.

The only symptom that is left is anxiety and panic. It’s so frustrating that this is the last symptom to go!

If you have Lyme disease, and you would like to receive my free 8-part email series on the best strategies that I used to support my body during treatment, click the link…

The Co$t of Lyme Treatment

From beginning to end, I’ve spent slightly over $50,000. And, that’s my own money…none of my medical care has been covered by the Canadian medical system or through private insurance. I haven’t included the travel expenses to get to my U.S. appointments (gas & hotel) or days off work my husband had to miss driving me to the States.

It’s really hard not to be embittered by the financial burden and the realization that I had a disease that is easily treatable in my own country, Canada.

This article doesn’t get into the political mess regarding Lyme Disease in Canada, but I am one amongst thousands of Canadians who have to go to the States for Lyme treatment.

My doctor alone has 400 Canadian patients in her practice (that number was as of 2014).

The U.S. border agents near my doctor’s office are thoroughly schooled on Lyme because they constantly have patients crossing the border for treatment.

When I declared that I was Recovered

I declared that I was recovered from Lyme, officially, in early 2016 — 10 years after becoming sick.

I had to look at the evidence: I was symptom free except anxiety/panic, I could do anything physical that I wanted without getting tired, and some of my food allergies that were Lyme triggered were gone.

Who knows if I’m really cured or just in remission, but all I know is that I’m thrilled for how far I’ve come, and I savor every moment I have.

  • I got on my bike pretty much every day this summer.
  • I go hiking, camping, and canoeing when my husband and I can.
  • I make a point to be grateful for my progress and to remember that there are others still fighting.

There is life after Lyme, and I’m still re-discovering it.

Summary of Treatments From Start to Finish

  • IV vitamins (helped a great deal)
  • Psychotherapy & Cognitive Behavioural Therapy (helped a lot)
  • Junk food and GMO food elimination (completely necessary)
  • Candida cleanse (didn’t do anything)
  • Oral supplements (helped a lot)
  • Vitamin B12 injections (helped a lot)
  • Gluten-free diet (helped a lot)
  • Pacing & tracking my symptoms (the only treatment provided for CFS)
  • Antibiotic & Antiparasitic medication (worked for me)
  • Sugar-free diet (a MUST!)
  • Allergy free diet (very helpful to avoid foods you’re allergic to)
  • Heavy metal detox with Naturopath (to help with treatment)
  • Hyperbaric Oxygen Therapy (wouldn’t recommend it unless you have a lot of cash. And, if you’re going to do it, place the treatments at the end of your treatment not at the beginning.)

Made for my Fellow Lyme Patients

I learned some very important lessons during my Lyme recovery and discovered some specific strategies that helped to support my body & mind during treatment. I’ve decided to pass along everything that I’ve learned in a FREE series that I created.

Get access to the series and find out which strategies worked best to get through Lyme treatment, successfully.

5 Comments on “My Big Book of Lyme Recovery

    •  by  admin

      Absolutely! You’re welcome to share anything from my website. I wish your friend a speedy recovery; I hope they’re getting the treatment they need.

  1.  by  Lori Geurin

    Wow, I’m soooo loving this, Alison! It’s so encouraging to read of your ultimate recovery from Lyme.

    This is what I pray for, long for and am striving towards each and every day!

    Thanks so much for sharing your struggles, symptoms, testing and treatment plans. I can relate to so much of what you’ve gone through and will hopefully someday be able to relate to recovery. I’m definitely making progress and for that I’m thankful. I know so many others who are working towards recovery too.

    I was bit by ticks in my backyard in Missouri in the U.S. in 2017 and went through many of the same battles you did in trying to find a correct diagnosis. I was initially diagnosed with fibromyalgia, Chronic Fatigue Syndrome and a host of autoimmune conditions before I started learning about Lyme disease, and testing positive for Lyme and tularemia. I became too sick to work, was bedbound and had to quit my teaching job.

    Thanks again for sharing your journey! I’m so glad I found your site and wish you all the best in your continued healing and health. Hugs!

    •  by  admin

      Lori, thank you so much for saying hello. It’s always wonderful to hear from fellow Lyme patients still fighting the fight. Have you noticed my free 8 part series? I made a series all about the strategies that help to support your body and mind through treatment — there’s some many out-of-the-box ideas. Here’s the link:

      I wish you a speedy recovery. There is hope…you can make it! xo

      •  by  Lori Geurin

        Thanks so much, Alison! I’ll definitely check out the 8-part series and appreciate you making this available to help others with Lyme.

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