Hi Friends,Familyand Brothers,
Hi everyone and let me thank you for reading my story and supporting me Physically, spiritually and financially.
I am setting up a go fund me page because in September of 2015 I was diagnosed with Chronic Lyme Disease with Babeosis and Bartonella co-infections with chronic neuropathic pain and Fibromylgia and I have found a Clinic that has shown a lot of success on treating Chronic Lyme.
The Laser Lyme Clinic of New England offer a 12-week treatment protocol and a bi-monthly maintenance treatment for six months after the initial 12 weeks.
They use numerous treatments from specially built lasers by Dr. Wine (Lead Dr.) himself," Today, our protocol encompasses numerous varieties of laser technologies, supplementation, detoxification, and nutritional guidance that, to date, has helped hundreds of Lyme sufferers get well and reclaim the function and lifestyle that they feared was lost forever."
We(Laurie-Ann and I) have chosen this center because Dr. Wine was diagnosed with Lyme disease in 1990 and knows firsthand the difficulty of the battle against lyme disease and its co-infection (more on these in a bit). Along with knowing firsthand all of his employees have had Lyme disease and been treated at the center. With all this information we met a couple that is currently partway through the treatment, He was diagnosed with MS 17 years ago and only a year and a half ago realized it was a misdiagnosis and he actually had Lyme disease. He told us after 5 weeks of this treatment "he can't remember a time when he has felt this good" so after meeting and talking with him I have made the appointment for an assessment for October 12th.Their website is http://lymelasercentersofnewengland.com/ if you want to check them out for more information. I won't lie when seen this website before I was a little weary because of all the testimonials but now that i have actually talked to people that have been through the treatment, I look at it a little bit different.
I have been dealing with excrusiating pain in my hands,wrists, arms, upper and lower back through my butt checks to both my legs, along with Brain fog, Memory loss to the point that I dont have much of a short term memory. I have had speaking problem and pronuciating issuses of words. I deal with extreme exhaustion and can not get rid of not matter how many hours I rest.Unexplained fevers, sweats, chills, or flushing, Unexplained weight change; loss or gain , Fatigue, tiredness,Swollen glands,Sore throat,Irritable bladder or bladder dysfunction, Upset stomach, change in bowel function (constipation or diarrhea), Chest pain or rib soreness,Shortness of breath or cough,Heart palpitations, pulse skips, heart block, Joint pain or swelling,Stiffness of the neck or back, Muscle pain or cramps,Twitching of the face or other muscles,Headaches,Neck cracks or neck stiffness,Tingling, numbness, burning, or stabbing sensations,Facial paralysis (Bell’s palsy),Eyes/vision: double, blurry,Ears/hearing: buzzing, ringing, ear pain,Increased motion sickness, vertigo, Light-headedness, poor balance, difficulty walking, Tremors,Confusion, difficulty thinking , Difficulty with concentration or reading,Forgetfulness, poor short-term memory,Disorientation: getting lost; going to wrong places , Difficulty with speech or writing ,Mood swings, irritability, depression, Disturbed sleep: too much, too little, early awakening,Exaggerated symptoms or worse hangover from alcohol, Fatigue,Tingling, numbness, burning, or stabbing sensations , Disturbed sleep: too much, too little, early awakening
These are the symptoms i have had over the past 26 years of having this disease along with Lyme Rage where you unexpectally lash of for any reason
We have been traveling to Albian ME,USA for treatment of this disease using Long term Antibiotics,which can cause a lot of problems in itself, but we could not get any help in Canada. There was doctors here helping patients but they were stripped of their license to practice because they are not allowed to perscribe long term antibiotics, even if it is showing improvement in patients and possibly saving their lives.
We have traveled to the US a few times a year paying out of pocket for the treatments and traveling, some of my medications were re-written by a canadian doctor if they feel comfortable to do so, if not then we had to fill the perscription in the US and pay for them ourselves. Our doctor has been treating Lyme Disease and co-infections for aprox 15 years when we started to see him. he told me with y symptoms i have had the disease for a long time and it would take minimum of 1 year but more likley 4 years for me to be sympthom free. As we continued treatment my doctor had realized I was worst than he had first thought and had made the comment that he had only had one other pacient worst than me and it took 6 years to get him sympthom free. So starting my thirties was not looking so hopeful spending the first 6 years in bed in pain, eating a special diet and taking 12 antibiotics per day along with vitiams and probiotics etc.
Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks.
This is directly from the Canlyme website: The many common seem to be MS, ALS, Parkinson's, Chronic Fatigue, Alzheimer's, Fibromyalgia, Lupus, Rheumatoid arthritis.
Lyme Disease is a brutal disease, some call it the "great Imitator" because it mimics so any other diseases it is crazy. Lyme victims are commonly misdiagnosed with other illnesses, such as:
Chronic Fatigue Syndrome
Early Alzheimers disease
Gastroesophageal Reflux disease
Irritable Bowel Syndrome
Psychiatric disorders (bipolar, depression, etc.)
Various other illnesses
Lyme disease is spread by ticks in our area, a tick has Bacteria in its stomach and when it gets full from gorging on your blood the Bacteria goes back into your blood (a tick doesn't have and exit for its food like the rest of us) or when a tick gets stressed (improperly removing the tic or your clothes rubbing against it while attached etc.) it pukes everything it has in its stomach into your bloodstream, which can be up to 10 different Bacteria infections which brings are called co-infections.
Lyme disease is medically described in three phases (stages) as: (1) early localized disease with skin inflammation and rash; (2) early disseminated disease with heart and nervous system involvement, including palsies and meningitis; and (3) late disease featuring motor and sensory nerve damage and brain inflammation, as well as arthritis.(taken from http://www.medicinenet.com/lyme_disease/article.html)
I am going to try and make this as small and detailed as i can
So where to start my story is difficult, most know that the past couple of years I have been having "troubles" but it actually started around 25 years ago, When I was 8 years old my mother noticed my lymph nodes were swollen and I was taken to my family doctor, and it was a scary time for my parents because the doctors couldn't figure out what was wrong with me and it got to the point where I was going to a Child Oncologist under suspect that I might have lukeumia and after getting blood taken every day for two weeks and multiple test that they came up with the diagnosis of Cat Scratch disease also called Cat scratch fever but actually called Bartonella Henselae which a healthy immune system can fight this infection and rid your body of it.
as the years went on I had pain throughout my body but it was blamed on "Boys will be boys" because I was always on dirt bikes or four wheelers and wiping out, when I was 15 I had surgery on my right eye because of a weak muscle, we don't know if that was caused the infections we didn't yet know I had, but there is documentation that says Lyme(Borrelia burgdorferi ) causes weakness in eye muscles. As I was a teenager would get more symptoms like painful red itchy blotches on my when in a hot shower, pain in my knees and others. At the age of 21 I started to have increasing pain in my hands arms, wrist and knees, the doctors blamed it on being a mechanic and my weight.
I was sent for Rheumatoid arthritis bloodwork every time I would go to the doctor complaining of pain, I was told to find a new trade or career path, I joined the Brotherhood of Boilermakers Union and I had started my apprenticeship and was keeping my pain under control but working at the LNG in Saint John and I use to drive to work and have to pull over and puke multiple days a week on my way to work and there was no rhyme or reason( I recently met a man with Lyme that use to do the exact same thing on his way to work) and then on an overtime shift I blacked out on the job when doing a lift and was taken off the job for a year and was told it was because of panic attacks and anxiety, which I did have after that but i kept telling my family doctor that the blackout was not the same feeling as the panic attacks but they were brush off as that. I had increasing pain in my wrist and elbows, I was diagnosed with carpel tunnel at 25 but they would not do the surgery because I was too young.
28 and increasing pain in my arms and wrists they diagnosed me with carpel tunnel(again) and Pronator teres, which is the muscle pressing against the nerve in your forearm, so at 28 they did carpel tunnel release and pronator release on my left and my right at 29 years old because my grip was equitant to a child under 10. What they didn't realize is i had Lyme disease with Bartonella and Babesiosis which causes your nerves to inflame (Swell up) so they cut away muscle to allow for my muscle to release from the nerve, well less than a year the pain was back because the nerve just inflamed into the spaced provided. Along with the arm hand/wrist pain i started having random lower back pain approx every 6 months.
When i was 30 I had to leave the job when working at Canaport in Saint John because I showed up at work and I was un able to get out of my car when i got to work,
By the time I was 31 we were expecting our first child and i had opened my own Auto repair with the hope that i could get the business up and running and get an employee working for my by the time my body gave up enough that I couldn't do physical labor anymore, well that came sooner than I expected,
By the Fall of 2014 I was on pain medication for lower back pain and bi-lateral sciatica (which is nerve pain down both my legs) When Abigail was born at the end of the August I couldn't even pick her up out of her crib and within 3 months I went from working to walking with a cane and then using forearm crutches to get around. There was a time I should have had a wheelchair to get around but not having one I spent weeks in bed in excruciating pain, I would have pain levels to the point where I had my right leg go paralyzed for about 20 minutes and when I went to the hospital I was told your body will do that at a point when the pan level is extreme, fun fact I never knew I guess lol. I went to physio therapist before my Cat scans and MRIs came back (it took many months for an appointment) I was told that where my pain is when I moved it was like I had 5 herniated discs in my back. Well after the MRI and cat scans came back it was unclear on where my pain was coming from and a Neuroligist started to tell me it was just chronic neuropathic pain, which is was just saying we don't know where the pain is coming from and you're probably going to have it the rest of your life. Well this is the point where you start to feel hopeless and confused.
Laurie-Ann seen and interview with Avril Lavigne and noticed that i had a lot of similar symptoms as her and Laurie-Ann was pretty sure that I had Lyme disease and i was sceptical because I already had a Pain Managment doctor tell me has has done courses on Lyme Disease and "this is not Lyme Disease" .
We found a LLMD Lyme Literate Medical Doctor in Albian, ME, USA. We met with this Doctor in September of 2015 and he was was certain it was Lyme disease and I was diagnosed with Chronic Lyme Disease with Babeosis abd Bartonella co-infections with chronic neuropathic pain and Fibromylgia.I have now been on two years of long term Antibiotics and at first i was seeing some progress but had long ago hit a plateau where i seem to be losing more ground than I am gaining so we are changing our gameplan because I can not live the majority of my thirties in excrusiating pain and more symptoms than i realize i am having.
When we were going through this we had the problems of not having a family doctor for part of it from 2012 -2015 we had no faminly doctor then a Nurse practitioner(in Fredericton) to a different nurse practitioner(in Fredericton) because the first moved and then the second couldn't help me propertly beause i needed pain medication and they can't perscribe it and then i found a family doctor in Waterville(close to Woodstock) and after a year and a half with that doctor she moved to Ontario so i was back to no doctor again but once Abigail was born and was givien a family doctor we asked and she is currently my Family doctor also, so ontop of fighting a disease we didn't know i had we also had to keep on the lookout for a family doctor which added to the stress.
We also went to nermous specalist during the time trying to figure out what was wrong, I forget exactly how many specalist but 14 sticks into my mind.
Here is kinda a point form timeline of my health Issuses related to My Disease
- At 8 years old I was misdiagnosed with Cat Scratch Disease after the doctors thought i might have Lukeumia
-At age 15 i had a weak muscle in my right eye and had to have surgery at the IWK in Halifax
-around 20 or 21 I started having knee pain,hand, wrist and arm pain. which was blamed on being a mechanic
- as my 20s progressed I was noticing a lot of widespread pain and all my doctor would do is send me for bloodwork for Rheumatoid Arthritis and it would come back fine everytime, so apparently there was nothing wrong with me.
I was litteraly send for this bloodwork 10-12 in my twenties
-By 23 I was told I had Carpel Tunnel Syndrome and needed to find a new trade because I was too Young to have the release surgery.
-at 26 I was working as a Boilermaker at the LNG tanks in SJ and was having stoumach problems where i would throw up nermous times a week on my way to work and then one day I blacked out while on the job and was taken off the job medically and it was blamed on Anexiety and Panic attacks(more like multiple bactearias attacking my nervous system)
-I had these problems up until 28ish along with more pain and a lot of symptoms i didn't realize like Extreme exhaustion which i just rubbed off on my life style of work and play.
-At 28 and 29(2 seperate surgeries) they finally did the carpel Tunnel release surgery along with Pronator release, releasing the muscle off the nerve in my forearm because my grip got so weak it was equlivant to a 10 year old.
- Along with the extreme pain in my hands, wrists, arms, I was having a lot of back pain and siatica pain in my right leg to the point where they did a nerve block injection to stop the pain
- 30 extreme back pain, exhaustion that just didn't feel right I started on the path that would immoblize me to where I am today
- age 31(2014) in the summer and after many doctor appointment we could not come to and explaination until Laurie-Ann had seen an Avril Lavigne interview on her battle with Lyme disease and she was convinced that I had Lyme Disease.
-I had been fighting to keep my pain under control and by the time Abigail was born at the end of August my pain was soo back i could not pick her up out of her crib or bassenet.
- September I had found a Lyme diesease doctor in Albian ME,USA to get a proper diagnoses which was Chronic Lyme Disease with Babeosis abd Bartonella co-infections with chronic neuropathic pain and Fibromylgia
-I started Long trem Antibiotic treatment, which is illeagal in Canada and why I had to go to the US for treatment
- I was told 1-4 years before i woudbe sympthom free but after a few appointments i was told he only had one other patient as bad as I am and it took 6 years to get him sympthom free
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