I have been living with Lyme disease for over 6 years now. I have been through a battle ….from being 24 hours a day with numerous medications in bed…and finally seeking treatment in Germany to today a lot better but still facing numerous challenges. Some days I feel ok, other days I am in bed all day. It is difficult to manage your life on a daily basis when on that particular day you feel well, do not know when you will feel well again, and trying and get a lot done. I have found my happy place at our farm. I remember when I was really sick and I had mobility issues I would pull myself along the ground to pull weeds from the gardens. I wanted to feel the peace, the birds singing and the feel of the sun on my face. I was on medication that made my skin burn easily, so I had to be covered head to toe so the sun could not reach my skin. The light would bother my eye so I had the blinds closed inside the house and often sunglasses on. I was isolated in a new community that I only knew the nurses , case managers , lab , social workers and care workers that would come in to look after me daily. There was days I did not think I was going to survive. I hoped, wished and prayed for another day, another week..or some portion of my prior life . I am lucky and blessed to have such a supportive spouse.
Today my life is not 100% ….maybe 70 -75% depending on the day but I am filled with gratitude I am here. I was always so busy trying to accomplish the next and then the next….instead of enjoying what I have today.
Lately, I have not been feeling well. Back in bed for the whole day…feel better…than shocks back in my legs…If you looked at me , I look fine…I am a warrior fighting through the war of Chronic live Lyme disease. I never know if I can plan anything because I have no idea if I will feel well enough on that day to go. My husband recognizes this so he never pushes but is supportive through these ups and downs. I feel a tremendous amount of love for this man that is my husband that stands today with me through this battle.
Chronic Lyme disease is not something I asked for. However, like any chronic illness anybody is dealing with you have to deal with what is.
I am hoping that I can educate others on prevention and share my experience and what I have been through and continue to deal with. How I deal with my life today? This disease has changed how I view the world and feel gratitude for what I have, where I have been able to be and for my life today..
As Lyme disease warriors, we all tend to isolate ourselves from the world, we need a community of affection that supports our endeavors in wellness and “I am here for you” …….
Lyme disease is a funny disease…it sneaks up on you in the most unexpected ways. I feel good some days and those days I want to do everything and anything I can as I do not if I will feel well the next day. I have learnt to try and pace myself but this is hard for me. I think a lot of people with Lyme can relate.But one thing I have to say is I am filled with gratitude each day. It has been a battle to get to where I am today. I spent almost 4 years in bed, hooked up to different IVs and careworkers coming in to give Tom respite so he could go to town and run errands for us. Toms smile , his happiness each day helped me through immensely. I do not have the life I once had, but maybe that is a good thing…I was always focused on what to accomplish next..instead of focusing on what I had already. I never gave up hope that I would be able to do some of the things I could not at the moment. For me my treatment in Germany I think helped me the most. I went through two treatments of heating my body to 107 degrees, lowering my insulin levels to kill the Lyme…but by this time though I had to two infections barbesia and Bartonella which cannot be killed in this manner so these I manage on a daily basis through the combination of diet, watching my stress levels…and managing what I do on a Daily basis. I try not to ask myself “why me”? It is what it is…anxiety creeps in at times…depression is a reality…than gratitude as I am still here…to get married…to play with my grandchildren…to walk…and having my “community of affection” support me. #lyme disease # living with Lyme
In June 2011, I was experiencing extreme fatigue for a few months. I have several businesses that I own and I was always doing many things all at the same time. I went to a walk in clinic in Toronto near the restaurant I own, and the doctor did some blood work. The doctor called me back for the results and told me I had very low B12, around the 100 range. He said I was to start B12 injections weekly. I did this. The problem with the B12 injections was that they were giving me methyl cobalamin and people with Lyme cannot have anything methylated. I should have been on cyclobolamine.
I was into three treatments when I came in from gardening, (I have a farm I spend 3-4 days a week in Orangeville) and the next few days I started getting shocks that ran thru my legs. The best way to describe it is, like putting your hand in an electrical socket and feeling shocks throughout your body. I did not immediately go to the doctor, as I thought it had something to do with gardening, finally after about two weeks, I went to the doctor and he booked me for a CAT scan of my back. It did come back I do have stenosis of my spine.
The pain and discomfort I experienced was overwhelming most of the time. I felt sick most times. I was throwing up, and if not nauseated. I remember now having a rash in between my breasts for awhile.
I was not working anymore since July 2011.
I woke up one morning to have no ability to walk, almost like my legs were numb. I was and have experienced some tingling, shocks in my arms as well. I went to the Emerg at the hospital in Orangeville. The doctor said there was not much he could do, I said the pain and discomfort was a constant and he gave me Oxycocet. I took one, never took another one as they did nothing and just gave me a more foggy head than I already had. I am back and forth to doctors to no avail or any reason why I am experiencing this discomfort.
I go to a physiotherapist around the beginning of November 2011. I am looking for any relief I can find. She tells me I need to check myself, preferably into Trillium Health Centre, to have tests done. I am assigned an internist.
One of the first questions I ask the doctor is could I have Lyme disease??? The doctor says Lyme disease does not exist here, end of discussion. They do a ton of tests on me, nothing. At this point, I am shuffling when I do walk, to help alleviate the pain, I am in a wheelchair and can hardly move my legs.
I was separated in September 2009, so most of the health care professionals said it was the stress of this etc. etc. that I had developed something in my brain that did not allow my brain to be working with what my body was suppose to be doing.
When I left the hospital, I knew I did not have cancer, tumours etc, which was great but I left with the same discomfort I had come in with and symptoms. They put me on a couple of anti inflammatories. Nothing was effective.
Thru Health Check I was able to finally get a family doctor. She originally put me on Nortriptline. I found this again ineffective, feeling of being sick, unwell and shocks to date have never subsided. She put me on Gavapentin and this was very helpful in getting my mobility back.
A couple of weeks after this, I was going into Orangeville, and I saw a huge sign saying information night on Lyme disease. I was thinking how could Lyme disease not exist, yet they are having this info night here. I met three ladies with Lyme disease from Orangeville, actually until recently, I did not realize the lady in the farm before I bought it from her, had Lyme disease herself. The symptoms we shared, were too uncanny and so enlightening. This is where my journey began to research a Lyme literate doctor to see if that could be what is the matter with me. Dr. Ben Boucher, came to me as the best in this field to hopefully offer me assistance. It is becoming increasingly difficult to deal with this each day.
I am now on 1200mg of Gavapentin three times a day. This is still not completely effective although it allows me some mobility with the assistance of canes for short distances. I now experience “seizure like” episodes throughout my body that last from anywhere from 3-5 minutes that are very, very, painful.
It is like the life I once had has been stolen from me. I spend most of my days in bed.
I was once extremely active, enjoyed outdoor activities and now everything needs to be planned in minuet detail to allow limited activity for me or I will “pay for I” and end up in excruciating pain again for days.
I have started seeing a naturopath, to help build up my immunity again so that my body is able to fight whatever I have better.
I started treatment with Dr. Boucher in May 2012. He is on the east coast of Canada. He puts me on a herbal supplement that I have to build up drops on. I have Hercs reactions, which I am suppose to have but this lessens my ability to walk. I am bedridden. In Sept 2013 he starts me on doxycycline and I cannot tolerate this drug. I am throwing up, bedridden and experiencing flu like symptoms. During Christmas I am in and out of the hospital, I also get pneumonia.
In Feb. 2013, I find out Dr. Boucher is going on sick leave.
Lyme disease has taught me about life and to not live with any regrets…if you have chronic Lyme disease , do not ever lose hope of getting better.
I see my experience as a blessing because now that I have gotten a second chance at life, I am going to live my purpose, be me and not waste time on meaningless junk. It is my turn now and now I want it to be yours too.
My journey to wellness I want to share with you in the hope that it might help someone ….somewhere.
Brenda Bot 😀