my lyme story
I’m a creative gal with a love for design and do this professionally. I’m mom to an insanely overactive 6 year old who’s the joy of my life. I’m wife to the most loving and supportive husband in the world.
I started this blog to document my Gall Bladder Issues back in 2008. That already in itself took 2 years of my life. The next 2 years grew into something worse. Lyme Disease. Seriously what’s going to come next?
This blog will be my documentation of treatment. In my thousand hours of research on Lyme, I’ve read so many blogs, information sites, forums and the like and have benefited from many. However what I couldn’t find were factual documentation from Lyme sufferers on their treatment regimen and how it helped or didn’t. I can’t really blame them, I mean who wants to blog when they are in pain? My goal is to do just that.
2008 – 2010 – Gall Bladder issues with removal via Cholecystectomy
Jan 2010 – Diagnosed with GERD
Oct 2010 – First dramatic symptoms of Lyme
July 2011 – Second dramatic symptoms of Lyme
March 2012 – Officially diagnosed with Lyme
April 2012 – Starting treatment to recovery!
June 2012 – 65% Recovery
Sept 2012 – 75 Recovery
December 2012 – 85% Recovery
January 2013 – 90% Recovery
November 2013 – Completely got off meds
February 2014 – On Chinese Herbals
July 2015 – Present – COMPLETELY OFF EVERYTHING!
Follow me on my new blog at verse333.wordpress.com
Written in March 2012
In the span of 2 years, I’ve had been seen for over 45 visits for health related items, diagnosed with gallbladder disease and removal via Cholecystectomy, diagnosed with GERD/Acid Reflux, too many walk-in and ER visits to count, seen 3 GP’s, 2 Gastroenterologists, 2 Ear Nose Throat Specialists, a Surgeon, a Neurologist, a Chinese Herbalist, an Acupuncturist, a Chiropractor, and a Holistic Practitioner. And lastly, a specialist in New York.
I have had over 4 abdominal ultrasounds, a barium swallow, a celiac test, a colonoscopy, an upper gastroscopy, a head CT Scan, an audiology test, 2 dizziness tests, an abdominal MRI, a brain MRI, and far too many blood labs, EKG’s and X-rays to count. All tests came back clear. Most doctor’s saying they can’t help me, find anything wrong, stating I’m stressed, depressed, pushing pills without further investigation and accusing me of dreaming stuff up.
I can certainly say that my journey has not been easy. I can also say that my faith in conventional Medical Doctors and the Canadian Health Care System have diminished drastically. Their ignorance in my situation forced me to do my own research and become my own doctor. I learned to use the “system” only to aid me in obtaining the tests that I felt needed, not at anyone’s request, but my own. In my situation, I’ve learned that most Doctors don’t really care, don’t let you talk, don’t investigate, and are overly quick to prescribe pills that only mask the symptoms (if that) and prescribing some that have absolutely nothing to do with your symptoms.
I have recently been tested positive for Chronic Lyme Disease with co-infections of Babesia and Bartonella. If you don’t know what this is, it’s a Malaria-like parasitic disease. After almost 2 years of suffering from this “mystery illness”, I think I finally have some closure. But this is just the beginning.
I made a vow to myself that if and when I found the answer, that I would write about it. Not only to document the absurdity of how this story came to be, but if it helped someone in one way or another, that the past 2 years would not have been suffered in vain. Moreover, the reason I am sharing my story with you is because the Canadian Health Care System will not help me or anyone with Chronic Lyme seek treatment in Canada. They do not believe that this exists. My story echo’s thousands of other stories all around the world.
THE FIRST BATTLE: I’M NOT CRAZY
I suddenly became very ill with fever, chills, my face turned pale white and I was overcome with extreme nauseous and dizziness. It was a death experience.
The next morning, I headed to the ER suspicious that something had relapsed with my gallbladder surgery earlier on in the year. I did the usual blood tests which all came out clear. I was referred to my second Gastroenterologist, Dr. Cross Examiner, explaining my symptoms. I lost all my appetite, it felt like food was constantly stuck in my throat; I had the same right upper quadrant pain as I did pre-surgery. I asked if it was possible that a stone was still stuck in the bile duct. “Absolutely not”, he replied. The rest of the conversation was me on the witness stand and him as the cross examiner. Questions that kept arising went in the direction of “How do you react in stressful situations?” which might as well meant: “Are you suffering from depression?”. I knew where the conversation was headed, so I reassured him that I have better things to do with my time than pretend to make up my symptoms for whatever reasons one would think. He sent me to get the same old blood tests, ultrasounds and a celiac test (again, all of which came out negative).
Vowing never to go back to that horrible GI Doctor, I went to Dr. 3 hours, my regular GP. I told her the same symptoms and she ordered a barium swallow. This test requires that you drink a chalky liquid through a straw no less, while they teeter totter you up and down on a flat table until you are on the verge of vomiting. I was diagnosed with GERD (acid reflux) and was promptly prescribed with the Pantoprazole.
Another ER visit due to chest pain, I was advised by the doctors that this was caused by Acid Reflux. An EKG which came out clear.
I had enough with the conventional Doctors and tried the Chinese Traditional Medicine route. I went there every week for a consult and to get their dried herbs and other unknown mystery material. I can only tell you that this stuff looked like someone ran into the woods, grabbed some manure, mushrooms and some tree bark and packaged it all up. Despite the rancid taste, I did this daily for 3 months, 3 hours a day. At this time, I felt pretty good, I could pretty much eat what I wanted. By the end of July, I had stopped taking their herbal remedies because they said I was good and cured. I was kind of relieved because this weekly remedy was beginning to cost alot of money at an average of $80 a pop.
Two days after I had stopped the Chinese Herbs, I felt overwhelmingly sick again. Besides the extreme nausea, chills and severe vertigo, new symptoms came up. Sudden (and I mean SUDDEN) onset of really bad anxiety and depression which came out of nowhere, loss of feeling in legs and arms, anaemic and hypoglycaemic symptoms and internal tremors. It felt like someone had drained all the blood in my body. I had lost all my appetite again. Three bites into a toast would send me into severe fit of nausea and dizziness, rendering me completely useless and bed bound. Something was really wrong. The intensity of this lasted for about 4 days and the general bout of malaise for about 2 weeks.
The next day, I went to the ER again and waited 6 hours. Tests came out clear. After this, I decided to go on a gluten free diet despite the fact that my celiac blood test turned negative. I cut out red meat, diary, sugar, and coffee and started taking probiotics, vitamins and supplements. My food intake diminished to practically nothing. I was scared to eat anything in fear that it would bring on symptoms. In the span of 3 months, I had lost close to 15 pounds.
Besides the gastrointestinal issues, I still had to tackle my head issues, so I went to another GP, Dr. Gollum, and asked to be referred to an ENT (Ear, Nose Throat) Doctor for the dizziness. After a 2 month wait, I finally went to see him to address this. With the ENT, I was put through a hearing test, an electrode test and finally a VAT ENG Test, all of which came out clear. His final diagnoses after 5 months was that I was stressed and had low blood pressure. He prescribed me Serc, a pill that diminishes your dizziness symptoms. I never fulfilled it.
At the same time, my upper GI issues were still present. I had requested a colonoscopy and gastroscopy at the same time. Dr. Gollum thought I was completely crazy for wanting to do this at my age much less both procedures at the same time. But I really didn’t care, I just needed to find out what was wrong.
The prep for the colonoscopy is an entire story onto itself, but that’s another blog. I’m just glad I had it done and I urge anyone reading this not to wait until the recommended age of 50. Anyway, both tests came out clear, no ulcer, no infections, no polyps, however the upper gastroscopy (this is where they insert the tube down your throat), left me with severe esophageal, chest and stomach pain for the next 2 months. Again, I went to my second home, the ER and again, chest x-rays and blood work came out clear. I also went back to my Dr. Gollum and requested to see a Gastroenterologist at St. Michaels Hospital. He refused my request and put me on 2 months of Nexium (for GERD) to see how I would respond.
My symptoms were now coming every month and would stick with me for 2 weeks leaving me barely able to function. I began thinking maybe I was bi-polar. I remember this because I typed it in Google. Either that or I was going mentally insane. I even thought our house had a mold problem, or some type of ventilation issue, so I got a company to come and clean out our vents. When that didn’t relieve the symptoms, I thought maybe my eye glasses were causing my dizziness so I switched them to another pair. When that didn’t help, I blamed it on the weather causing my severe brain fog, head pressure and dizziness. When these episodes started in beautiful sunshine weather, something was definitely screwy.
I then went to see a Chiropractor (and still see him to this day) as a desperate plea for help. Nearing the end of November, I had it with the so called “reflux”. I caved in and went and got the prescribed Nexium. 5 days into this, I got terrible side effects. Besides the headaches, a new symptom came which was really bizarre. I started having internal body vibrations. It was like I was sitting in a car that had the engine on. This came off and on at random but occurs more while I’m sleeping or at rest. These tremors greatly impacts my fine motor skills like typing, writing, doing fine tasks and it was really starting to scare me. Then came the hot flashes, night sweats and fluctuation in body temperature. I seriously thought I was at peri-menopause at the age of 36.
Because I’m a glutton for punishment, I went back to Dr. 3 Hours, again telling her of my upper stomach pain. She wanted to prescribe me Cymbalta. I knew that sounded fishy because I had just seen a commercial for it. Well, guess what? Cymbalta is anti-depressant. Yes, that’s right, an anti-depressent to relieve stomach pain.
I asked her to refer me to one of the 5 highly rated Gastroenterologists at St. Michaels Hospital since Dr. Gollum flat out refused. She obliged. I almost fell off my chair when her secretary advised me that there was a one year wait. I requested that she go to the next one on my list. She replied that she “didn’t have time to just sit there and keep faxing and requesting referrals for me”. I was like “Ok, what is it that you actually do there?”. In short, 4 GI referral attempts were not granted. Two of them stated “Your file didn’t warrant further investigation”.
I went back to Dr. 3 Hours and requested and abdominal MRI. At this point, my weight was diminishing and I could barely eat 3 bites. This didn’t really concern her however; she advised that I would need to do another battery of blood tests and what I would consider my 100th ultrasound. After 3 weeks, I went back to see her for the results. I took my husband with me so he can get a glimpse of the circus act that I am living. Well, guess what? All tests were clear. Ignoring my further questions, she looked me straight in the eyes this time and said “I know you are frustrated and your pain is very real, but we may never find out what is pathologically wrong with you.” I wanted to scream at her and say “YOU AND YOUR INCOMPETENT STAFF ARE THE ONES THAT ARE MAKING ME FRUSTRATED! ”
When we got home, my husband thought we should talk to the original surgeon who performed the gallbladder surgery on me 2 years prior. We called and spoke to the receptionist. She said that it would be illegal for Dr. Surgeon to open a dialogue with me again and that I would need another referral. My husband challenged her, “So, if my wife were to run into Dr. Surgeon on the street, she would run away because it is illegal to talk to her?”. She responded saying there wasn’t a history. My husband replied, “I think the fact that Dr. Surgeon removed an organ inside my wife’s stomach warrants a bit of history, you think?” She didn’t have a response to that. So apparently, this door is now closed too.
Symptoms are changing. The GI issues eventually cleared up. But new issues surfacing appear to be neurological.
After visiting the Dr. Mute Dentist for a routine cleaning, I was told I had a gum infection. I was prescribed 4 days of an anti-biotic called Amoxicillin. Two days after taking this, I started to get shooting pains in my cheeks, the internal tremors, shakes and vibrations were getting worse, I felt numbness in my left arm, face and severe dizziness once again. The brain fog and head pressure worsened and excruciating headaches accompanied it. I could only describe it as if your head was in a vice, stuffed with cotton while trying to walk around drunk. More bizarre things were happening. I had trouble finding words, getting disoriented in the mall, feeling migrating joint and arthritis pains, short term memory loss, like forgetting why I went upstairs 2 seconds after climbing it, or what I needed to get out of the fridge. Blotchy red cat scratch rashes also appeared when I got out of the shower. I started asking people the same questions over and over without realizing what I asked a minute ago. Some looked at me like I was crazy. My husband only chalked it up to selective hearing.
Back to the ER I went, another EKG and this time a head CT Scan as I thought I was having a stroke from the neuro issues. Both came out clear. I was referred to a Neurologist. I also went back to Dr. Gollum and demanded a brain MRI as Dr. Mobster didn’t think I needed one.
My symptoms were like clockwork, coming every 4 weeks or sporadically and getting worse. At this time, I began turning away work citing health issues because my mind couldn’t mentally function and I never knew when my symptoms would appear. I could be fine at 10 am, but at 10:35, an overwhelming fatigue could hit me leaving me to crash on the couch.
I went on Google this time ready to find an answer and typed up the new symptom “Internal Body Vibrations”. The three main things that pointed to this was Menopause, Lyme Disease or MS. I decided to pursue the Lyme route.
What is Lyme?
Lyme Disease is a bacterial infection spread through the bite of an infected tick. I had come across Lyme Disease many times before, but dismissed it because for those who know me, I’m not exactly the outdoors type of person. One may just pass off that Lyme is nothing but a bug bite. It’s absolutely way more than that. This disease if left untreated can cause individuals to be bed-ridden, in wheel chairs, and at the worst, fatal death or suicide because they can’t deal with the symptoms from lack of treatment* (more on this later). This virus attacks every part of your body wreaking havoc to the immune system, embedding itself in tissues, and even worse affecting the brain. Lyme Disease is named “The Great Imitator” because the symptoms are wide range and often mimic other diseases that spread throughout your body. A list of symptoms can be found here: http://www.lyme-symptoms.com/1Lyme-Symptoms.html
Acute Lyme Disease is when you are exposed up to one 1 month from the infected tick (You would be put on a 14-30 day anti-biotic and be on your merry way). Chronic Lyme Disease is anything after that. So, what happens if you don’t recall a tick bite and go years and years (some their whole lives) with these disabling symptoms? Many are usually misdiagnosed with Chronic Fatigue Syndrome, MS, Lupus and Fibromyalgia. If you don’t see a Lyme Literate Doctor, you could be suffering your whole life.
Back to my story, things were beginning to make a little more sense now. The July malaise came after 2 weeks of heavy landscaping in our backyard. Thinking back, I remember flicking off what I thought was a piece of black fluff but was an insect. I also remember scratching my leg like crazy and a rash appeared, but not the distinct bull’s eye rash of Lyme. In short, I don’t truly recall being bitten, but Lyme can lay dormant in your system for years (perhaps if you were bitten as a kid), and re-activated later on in life if you were bit then.
Google became my best friend (although it does do more harm than good). I realized that the Amoxicillin made my symptoms worse as well brought on new symptoms. This is because Amoxicillin is one of the anti-biotics used to treat Lyme and I was reacting to it, which was called a “Herxheimer Die-Off Reaction”, meaning that the virus was being killed off in my system and releasing toxins into the bloodstream greater than it can handle, hence heightening my symptoms.
So, now that I am “guessing” I have Lyme, how do I get diagnosed and treated? Or even worse, am I just chasing another rainbow with my self-diagnosis? Will people think I’m even more crazy?
THE SECOND BATTLE: GETTING THE DIAGNOSIS
Canada’s testing system for Lyme Disease is archaic. I couldn’t rely on this because their testing methods come at only 30% accuracy resulting in thousands of cases being misdiagnosed.
Suspecting that I had Lyme, I knew the longer I waited, the worse I was going to get. I emailed a friend of mine asking for some advice. She replied and told me that her friend was experiencing the same symptoms as well as was being tested for Lyme. I gave her friend a call and we chatted. Soon after, her results were positive.
I made an appointment with a Lyme Holistic Practitioner which is very rare to find and I lucked out because his practice was only 20 minutes away from me. After a long consult, he gave me herbal tincture drops in a bottle called a “Lyme challenge” that I was supposed to take daily. These drops are natural herbal remedies that actual Lyme patients use for treatment. If I had any reaction to this, there is no doubt that I am fighting an infection.
At the beginning of this challenge, I very much doubted myself that I was even sick because I felt really good. About 1.5 weeks in, symptoms became worse, and more heightened than before. It actually landed me in bed for about 4 days. I had severe nausea, all my joints were becoming red and inflamed, I had muscle aches, dizziness, loss of appetite and walking around like I was drunk. The Holistic Practitioner pretty much confirmed that I was having another “Herx Reaction”.
At the urging of my new “Lyme friend”, I needed to get my blood drawn for testing. There were 2 ways. One is the non accurate Canadian Test way and the other is the United States way.
So, I called IGeneX Laboratories in California and ordered a test kit at the expense of $260. When I got the kit after 2 weeks, I took this to Dr. Gollum praying he would sign the requisition with no questions asked. As I predicted, he didn’t know what the tests were and he was trying to make me believe that I didn’t need them. He eventually signed it and said to me as I walked out “You are dreaming up all sorts of sordid stuff”.
I then went to a lab to draw the blood, waited an hour for them to spin the samples, drive to FedEx and pray it reaches there the next day. At the same time, I also drew blood for the Canadian Test. Eavesdropping on the nurses, I observed them looking through their big binders murmuring “What is this test? We haven’t done these before, is it covered by OHIP?”. When she came to me, she whispered: “These blood samples will go into the Black Vials and sent directly to the Government. We aren’t allowed to process these.” I thought, “Hmmmm I wonder why. Can someone smell CONSPIRACY?!”
Blood Lab Results as of March 2012:
IgeneX Laboratories in California = Positive
Canadian Lab = Negative (with some tests being cancelled stating not covered by OPHL – Ontario Public Health Laboratories) Surprise! Surprise!
THE THIRD BATTLE: FINDING TREATMENT
So if it was this hard to get the diagnosis, it’s not a surprise that getting the treatment will be worse. In all my exhaustive research on Lyme (I’m certain to say over 100 hours), I had to acknowledge the fact that Canada will not aid in my treatment of Chronic Lyme Disease. Why the controversy? Besides the fact that many doctors aren’t aware of Chronic Lyme, those that are, will NOT treat this in fear of having their licenses taking away. There are so many political factors surrounding this and would take me too long to write. In short,
- They don’t believe that Chronic Lyme Disease exists.
- They think the infection can be eradicated after 30 days of treatment.
- They don’t want to cause mass panic when this disease is actually posing epidemic and thousands of cases goes unreported every year due to their archaic testing methods and improper treatment methods
For a quick read, go here: http://www.cbc.ca/news/health/story/2008/11/17/bc-doctorretired.html or google “Lyme Disease Controversy”. Dr. Murakami (who was in this article) was gracious enough to call me from BC and advised me which tests to get for diagnosis. It was also through him and a friend who was also just diagnosed with Lyme, that I found an LLMD in New York.
How long is the treatment? I was advised by the LLMD in Washington that generally its 2 months for every 1 month you have been infected. So if my estimates are correct, that means that my treatment will be for more than 1 year. Unfortunately, the treatment and consults will have to come completely out of pocket because OHIP will not cover. The expenses for treating Lyme Disease is very costly with some re-mortgaging their house or stopping treatment entirely due to lack of funds. In some extreme cases, a couple that could not seek treatment have committed suicide.
THE FOURTH BATTLE: THE TREATMENT
We finally drove to meet my LLMD in New York with a 2 hour consultation. I explained my symptoms and my history, and then we discussed my treatment plan and then finished up with a physical. My treatment will consist of 5 different antibiotics with supplements. If I read my plan correctly, I will be popping about 30 pills a day. Doesn’t sound like a whole lot of fun.
I will be seeing my LLMD again in 6 months with telephone consults in between for new prescriptions. I’m hoping that this goes well, however I do know it will get worse than better. The story continues from this point on in my blog.