My name is Melisa; I am a daughter, a sister, a granddaughter, a niece, a cousin, an aunt, a wife, a mother and a friend. I could be someone that you know.
People tell me all the time I "look good" but they aren't there in the morning shower when my day is greeted with the handful of hair that comes out while I shampoo - and that's only the shower; not the drying and brushing or the loss during the day. I know so many other people are losing or have lost so much more than this and every day I tell myself, "Melisa, it could be so much worse." It doesn't stop the pain of seeing the change though. The other external change I have is with my veins and thinning skin. Many of the symptoms are internal though; you don't see them and I get tired of complaining.
This started 8 years ago for me. We are in Southern Ontario and I was out pheasant and turkey hunting with my husband. Although we wore bug spray, each time we returned home and took off our outer clothing, we would find moving ticks on each other - sometimes as many as 4 each. We knew nothing about Lyme disease or what ticks and other biting insects could carry. In May 2002 my husband noticed a rash on my lower back after I'd showered one morning - it was about 2-3 inches long by about 1-2 inches high (it gradually spread out over the next months). I do not recall it being itchy or really bothersome - just thought I should go see the Dr. I started feeling very unwell and then had some very painful pelvic pain. I didn't associate it with the rash but, we had been trying to get pregnant and that was my first thought.
When my family Dr. saw me he thought maybe I had a "tubal" pregnancy and sent me for an ultrasound. I was a bit shaken and forgot to show him the rash. I was pregnant - I was also very ill - with a myriad of symptoms. I made another appointment and he finally saw me at the beginning of July. Upon seeing the rash he said he'd never seen anything like it before and sent me to a Dermatologist who finally saw me in October. The Dermatologist made the same remark, did a biopsy of the rash and sent a report back to my Dr. stating if my symptoms persisted "Lyme serology" should be considered - he gave me a cortisone cream to put on it. NEVER USE A STEROIDAL PRODUCT IF LYME IS SUSPECTED - it drives the bacteria deeper into the tissue. My symptoms persisted and I was finally seen by an Infectious Disease specialist in Jan 2003 - 3 wks before I had the baby. This very short visit concluded with the specialist saying, "Melisa, even if we did the proper testing and find it to be Lyme disease, I can't treat you because you're pregnant...go have the baby and see how you feel afterwards..."
My blood tests appeared "within normal ranges." The only questionables included a high MCH; Low results in Hemoglobin, Hemtocrit, Red Blood Cell, CK; A very high ESR of 83 (high in range was 20); and the ultrasound showing the enlarged lymph node in the left armpit.
That's where the ball in my game of health got dropped.
I kept a diary of symptoms at that time. My symptoms included - in no particular order: Heart palpitations and chest pain (palpitations almost daily). Tightness in my chest and throat with mild to moderate activity. Tiredness, muscle weakness (daily). Shortness of breath (daily). Nausea, and vomiting (nausea - daily, vomiting sometimes stopped by Diclectin or gravol). Night sweats (from June to end of July). Fainting and dizziness (first fainting at 10 weeks of pregnancy - dizziness daily, even while sitting.) Memory loss. Headaches and head pressure (frequently) left side. Numbness on left side of face, head and neck (frequently). Pain and a "hot" feeling at the ends of different fingers and toes (comes and goes daily). Pain and a "hot" feeling in different areas of my face (almost daily). Small dark lines at the ends of my fingernails (gradually grew out). Inability to sleep (nightly). Rash on lower back. Kidney stones, problems, pain in my back in kidney area. Swollen face, hands, legs and feet. Pain in my back under shoulder blades (frequently). Heartburn (daily). Acid reflux (daily). Visual disturbances and temporary loss of vision (sometimes prism-like and areas of vision go gray - almost daily). Pain in left armpit (daily). Swollen lymph nodes in left armpit. Pain and numbness down left arm and hand (daily). Pain and numbness down right arm and hand (but less frequently). Pain and numbness down legs (frequently). Joint pains. Pain and stiffness in fingers - sometimes I could not close my left hand. Face pain on left and eventually upper jaw...I had a lot of dental work on that side and "extra bone growth" (?) as described by Dentist after I had our baby in 2003.
I had our baby. She was a very difficult baby; she never slept and consumed my life. My enlarged lymph nodes under my left arm were looked at via ultrasound and eventually went down. My headaches on the left persisted; I had a CT which looked "normal." My shortness of breath persisted, heart palpitations, feeling faint after bending or squatting and my memory issues. Nobody explained they could be related to Lyme disease.
I think I'm mostly upset because now I know they could have looked at the placenta for evidence of Lyme spirochetes. I have 2 children now - who most likely have been infected. They have had their own experiences and problems and one day I will feel up to writing about it as well. I've had glimmers of the disease all through the years with ebbs and flows of the symptoms.....Among other symptoms, the left sided pelvic pain and loose hip joint forced me to take an early leave of absence again during my second pregnancy and then my bladder fell after the birth of my second child - I was 34 yrs old.
Last spring I started feeling unwell and asked a friend who works as a representative for a well known Vitamin Company if she could get me a good colon cleanse. I started taking it and it made me feel pretty bad, so I stopped. I then had an incident when I went with my husband's band to Texas in the spring for a few days. After being outside in the sun by a pool for a few hours (I drank water all afternoon) we got ready to go out and watch his band play. After 2 vodka drinks I became very ill and I later passed out after my husband got me back to the hotel. I was so sick and was convinced the bartender had doubled or tripled the shots. After learning more about the disease I now know the infection was brewing again.
In July I woke one morning and went into the kitchen to make my daughter some oatmeal. I felt nauseous. I walked over to put it in the microwave and the last thing I remember is the microwave door and the next thing I remember is my husband standing over me asking why I wasn't answering him. I was lying with my eyes open and my husband didn't realize I wasn't conscious. (In 2002 I had fainted a few times - I felt the "faint coming"....this was different, I had no idea. I literally blacked out.) My family took me over to the hospital where they ran ECG, blood and urine tests. They were concerned about my heart because I had chest pain all over my left side and a sharp pain over my left eye. Everything looked ok and they sent me home after 8 hours. It wasn't until I got up out of the hospital bed that I realized how "off-balanced" I felt. That was my last day of work. Over the next month I went through a period of not being able to walk properly, talk properly - the hardest part for me was that I knew it and couldn't properly communicate it; my family thought I may have had a stroke; my family Dr. thought perhaps it was the "onset of MS, Lupus, Raynauds or some weird autoimmune disease." The Doctors ran test after test, which showed little things but nothing too alarming to them.
I was experiencing chest pain, heart palpitations, headaches, pressure up my neck and head (for the first month it was immense pressure - unlike anything I've had before), face and jaw pain on the left, a disconnect feeling between my body and brain, numbness and tingling in various areas of my body, very sharp shooting pains -some like a knife going in me, my joints were starting to ache again(they did in 2002), my fingers were showing enlarged joints (in 2002 my hands were so bad I could barely move them - especially my left one) major cognitive issues, nausea, muscle fatigue, hair loss, feeling cold all the time, wild mood swings, vision problems - difficulty focusing and double vision, eye "floaters," my veins seemed to be more prominent - I wonder now if it's thinning of my skin but also I seem to have varicose veins in places - I was never a "veiny" person! My palms and soles of my feet ache - as if I have broken blood vessels, I get charlie horses all the time - muscle cramps, sun sensitivity, ear pain, hearing loss and ringing in my ears. The oddest symptom I have surfaced at the worst point with the neck and head pressure, during the night I rolled on my pillow and heard, what I describe as "fast shots of fluid" at the base of my skull - I used to work in the printing industry on hydraulic printing presses - it sounds like a line under pressure; releasing...I heard that same noise a few times during that night and the next day the pressure seemed a bit less intense. Ever since then, periodically I hear that same noise. My right pinky finger has been completely numb since August, I get muscle pain and fatigue, shortness of breath simply from walking upstairs from my basement - as if I've run miles, my arms ache just trying to hold a sheet up to fold (thanks to a friend who has Lyme as well, I know now to lay it on the bed - but, I'm 38 yrs old - my brain says this is just ridiculous!!) eye pressure, jaw and face pain, gum pain and insomnia........I'm sure I'm forgetting some things.
Yes, some days are worse than others, I start to stutter when I'm tired or upset and can have difficulty speaking for long periods - my mouth, tongue get tired and I have trouble forming words. I have trouble recalling words I know that I know; my vocabulary is just plain rotten at times! I have difficulty putting my thoughts down clearly, relaying my thoughts clearly, and I get muscle spasms which include little ones that happen all over my body and that a lot of people are familiar with - twitches I guess but, I can get them so bad that for example, my whole side will move, it's hilarious, like I have a baby inside again!
Blood tests showed only Low Urea, Potassium - High MCH and a very high CH50-Hemolytic Complement at 371 (range is stated as 100-300)
From the tests we know my thyroid is heterogeneous with hypoechoic nodules throughout the gland (hypoechoic nodules can become malignant) my ANTI-TPO and ANTI-TG were 180 and 183 (high in ranges are 35 and 40), I have white matter spots on the left side of my brain, I have (they ran two tests and each radiologist described it differently - I am still waiting to have it re-read) either a "cystic mass" OR "tissue thickening" at the 3rd thoracic vertebrae, I have deteriorating disks at C5-6 and C6-7 with some bulging, I had a thallium heart test and that showed some heart perfusion defects which the radiologist correlated to Lyme. Currently, my Lyme Literate MD (LLMD) is looking into vasculitis.
Last August I had a friend remind me about 2002-2003 and she gave me the website for the Canadian Lyme disease foundation - http://www.canlyme.com/. It wasn't until Sept. that I was out of my "stupor" enough to read the information and contact them for Dr's info. I insisted that my family Dr. refer me to the LLMD canlyme had recommended and that specialist finally saw me in November.
This Dr is amazing; he is brilliant, he is kind, compassionate and above all else an excellent LISTENER. By far one of the best Drs I have come across in this long road. He is confident--based on my medical histroy, clinical evidence and the fact that nothing I'm experiencing can be attributed to any other disease by any other specialist--that I have "3rd stage Lyme disease."
I will back up here a moment, because although I was having test upon test I wasn't receiving any help. The best my family Dr. could do was prescribe Lorazepam and told my husband to take me home and "try to relax, go to dinner or something" - I took one pill - still have the bottle.
The beginning of September my Mom took me to a Natural practitioner who had a Biomeridian machine. She tested me and said my "systems" were overloaded and shutting the doors; my adrenals, kidneys, liver, lymphatic, colon... everything. Her testing also showed Borrelia, Rocky Mountain SF and a few other bacteria and viruses. I later had her test my children and both showed the Borrelia and RMSF. She began treating me to open up the systems and flush the toxins out. I don't believe I would be walking or talking properly today if I hadn't seen her. I think I would have continued the downward spiral. I also had an Aunt who said I should start taking as much Vitamin C as I could tolerate and some good friends bought me a huge tub of powdered Vit C. My Mom bought me a huge container of CoQ10 which she and another Aunt insisted on as well as magnesium and B12. My Mom, my family and friends have been a huge support. All of these things have helped immensely I am sure.
The LLMD started me initially on Doxycycline - 200mg in am and 200 mg in pm. This past January he changed it to 250 mg of Azithromycin AM/PM and 200mg of Plaquenil Am/PM (that is almost 1000mg a day), I am taking all of the vitamins I mentioned earlier along with a multi and a really good probiotic that I take before bed so it has time to work. I also take milk thistle and flax seed oil (capsules) and iron. I'm very fortunate to have a mother, family and friends who believe in natural things as they have been a huge support and help to me. And I am a firm believer that God put things on this earth for us on purpose so that we could remain healthy. I take epsom salts baths, I have even had foot detox baths. I also recently started some of the protocols that Stephen Buhner has in his book.
I'm getting brain freeze now, you'll have to forgive me. I don't type well - I find it not only hard to get my fingers to work but, to get my thoughts out clearly. I re-read everything and find it takes hours to do what used to take minutes.
Three days ago I actually thought I was beginning to feel a bit better, less "puffy"/inflamed...then that same evening I got hit really hard with the shooting stabbing pains...they are so bad at times they make me cry in an instant. I now realize I'm going to have "waves" of wellness and that each day I feel less of the symptoms, is a day to take advantage of and do the now "special things" with my family. These days tire me tremendously but are so worth it!
Financially, I do have medical coverage through work for the antibiotics but I have to pay up front and then wait for the 80% back from Insurance Company (I am currently on an unpaid sick leave from work). The medication alone is almost $300.00 - then factor in the probiotics, multivitamins and everything else...you can imagine what I'm spending!! I have submitted a claim for disability but, the Insurance Company hasn't given me a decision yet. I'm trying to be patient but, I can't afford the medication this month.
**update - I had a friend talk some sense into me and I charged it to the credit card...yet again! Do I feed my children? Pay the mortgage? Buy my medication so that I can get better and get on with my life? We have always provided for our family with two people making an income. In January, we had to remortgage our home with a consolidation.
We Ontarians have a Dr. in Mississauga, Ontario who is currently being investigated by the Ontario College of Physicians and Surgeons for his treatment of Lyme disease patients (although they have not received one complaint from a patient!)
Thank you for taking the interest in and the time to read my story, which was a painstaking task although very fulfilling....my goal from all of this is to help stop the misdiagnosis and mistreatment of ailing people and to help educate people so that they can help themselves if ever the situation should arise.
Melisa Hodges-Young, Canada