11 April 2017

Chronic Lyme and Me

I always know it is going to be a deep and gut wrenching post when I start by staring at a blank screen, type, stop, read, delete! delete! delete! start again, repeat and repeat again, until finally the words begin to spill out and fill the page, flowing easily like the multitude of tears that have flowed lately for me.

Where should I start? the physical? the emotional? the mental state? thankfully the spiritual side is solid.....we have been on the hunt for what has been disabling me for the last almost 30 years, there have been many diagnoses', I fear many of them have NOT been accurate, if any at all actually....that in itself is a whole other can  of worms that I am contending with in my mind, the amount of times that I have taken poison to fix what they said was the issue to then have it either make it worse, or uncover something else...my positive side keeps telling me to look at the bigger picture and know that I am still here so maybe in all that some things actually helped....it right now is an inner struggle for clarity as I walk the minefield that has become my health. Suddenly there was a Staph infection, it showed itself first on my breast, as the lump grew and became inflamed off to the ER we went....to have it cut open, drained, packed and a prescription for antibiotics....this same thing happened to me just about 8 years ago. It was a long drawn out ordeal that included surgery, cauterization, and months of nurse visits and homecare....it of course unnerved me, the doctor being aware of the history and my failing health wrote a script that may have actually inadvertently saved my life in the long run not just in that infection. At that point  my speech was becoming quite affected as well as my mobility....I suffered mainly in silence, I thought I hid it well but I am being told not so much from those closest to me, watching me suffer was something they were not ready for either ~ they always watched before but this was different, there were multiple things happening at once, and it seemed to be coming on quickly.....at this point we got the MRI reports, there was no MS to be found so once again treatment was eluding me.....it was then that my sister from years before reached out to me, again as she had tried so many times before, she knew what it was, she was sure and suggested I speak to my doctor about this, I told her I would since I had an appointment the next day I had that conversation. By that time I had had time to go back through my health history and correlate the times I had mysteriously gotten better, with stages of flares and remissions, always involving long courses of antibiotics, sometimes upto 3 months to kill persistent infections....my kidneys, my liver, the staph infection....it was a consistent cycle of meds that brought out my healthiest moments I could remember, like I was suddenly cured, feeling great, no pain then I would start the slide all over again, further, deeper into a hole of despair, each time harder and harder to find my way out of. 
The moment I sat with my doctor that has known me for approximately 24 years and broached the subject of Chronic Lyme I was at the end of what could be causing this disability, I needed answers that could help....he listened thoughtfully, opened my chart, starting looking at the past, the incidents I reminded him of, the cycles I had lived through of what now to him also seemed like remission and flares....at that moment his words were a moment I won't forget ever, "Now I think we are onto something" the staph infection was still raging at this point, so he looked at the med and said well this does treat Lyme as well so we can try another course of it, I did, the staph infection died and another one shot up elsewhere....another course of antibiotics, now 6.5 weeks of antibiotics, and I herxed, badly....for those that don't know what this means it is the bacteria that cause Lyme disease dying off and creating endotoxins that cause you to feel worse than you did before you started treatment. There is more information available here, it was bad, I was of course not detoxing at that point and totally unprepared for it.....I was happy though to have an answer, something that actually was working, I thought ok now we get treatment under way....I knew about the years we would need, it would be hard but there was hope again. Then I spoke to my doctor and of course the dreaded blood test for Lyme came up, its highly inaccurate, something everyone knows, still something that is required to be positive for treatment ~ conventional treatment of 30 days of antibiotics and that's it you are cured! I wish it was that simple, it of course is not, not by a longshot is it that simple or cut and dried.....Chronic Lyme is something that the medical field many in unison deny the existence of, and for those that have taken on the system to say yes it exists, yes I treat patients for it well they have either lost their medical licences or given them up to follow a holistic or naturopath calling, and many Lyme patients are so thankful for them. It is the general thought in the medical world that the test is proof and the only proof, it is not, and should not be used as the only designation of Chronic Lyme by doctors as you can read about here

So finally I am sat there knowing what it is, waiting on test results that because my exposure was almost 30 years ago were bound to be negative and they didn't disappoint and with that my access to modern medicine for anything other than when my body reaches crisis again, this was not an acceptable option. Although I can understand any doctors reluctance to put them out there for a patient and risk their licence this did nothing for the deflation and reality crushing soul moment that was. I stood in my kitchen staring at my herbal shelf, with my laptop looking for help, I reached out to my niece who has been helping her mother for years with her own case of Chronic Lyme and asked for help, for once I was totally stumped and possibly feeling it all crashing down around me, but I knew I had made progress and I wanted to keep going....a few days later I was told about the Results RNA and I found a renewed sense of hope. I also remembered that approximately in the middle of the last major crisis of my health I had seen a Naturopath, she had listened intently to my list of ailments and how I felt and she suggested then that it sounded to her like Chronic Lyme.....at the time I was seeing a Nurse Practitioner having moved out of my doctors area for a time, and she was skeptical and did not agree so testing never happened, it might not have changed anything then either considering the state of the accuracy of the test. Now here I am, this is me and yes Chronic Lyme lives here, and now I have a possible way to get better, a doctor and a plan....and no provincial, federal or modern medicine supports that we all take for granted here in Ontario....No OHIP to help me, no this has to come out of pocket to the tune of just about $6000 or slightly more for my medication alone, over the period of a year, plus office visits, plus any antibiotics I may need if my body goes into crisis, and as I get sicker to get better working on my shop is impossible, the total cost for the year will hit more or less $10,000 doesn't sound like much to save your life does it? our entire combined income last year was $17,500 and that was a huge improvement from living in New Brunswick but still a far cry from being able to afford this, I try to keep the faith but sometimes it is just too much. I am thankful for the family emotional support I have and thankful that I will have more of it soon, I am sorry that they have to watch me go through all of this but I hold onto hope that it will give me freedom from so much pain in the future. My speech is improving, still a bit confused at times to make instant connections on anything and if you know me well you know that is NOT like me at all, but it is an improvement....I now have more tinctures coming to help me with detoxing my body so that the herxing is not so bad, and yesterday and today I was able to make dinner for us all took me 4 hours to do it all but I did it and I am thankful for that.......I have faith that somehow it will work itself out, and the treatments will continue. 

I am not fooled though, I know it will be a long road, and a difficult one, I am trying not to let my anxiety take it over, which I have found is possibly a result of the Lyme as well as the fact that I spent some time with my GI tract actually paralyzed, another by product....so many things.....so much that at times I am overwhelmed and saddened, my Vitamin D is almost off the charts, another one I have to tackle next....today in this Full Moon light I am putting this all out there, asking for your energy, love and understanding on this journey of mine....and most of all I am grateful to all of you that have stood by me and helped me get to this point.....now to fix it all, and expect more information in the blog about treatments, results that I am experiencing and I also have a photo album on my personal page of my fight with Lyme, a picture is worth a thousand words right? and if nothing else it might help someone else that suffers to know they are not alone. 

For now I leave you with this, be kind, be gentle when you walk in the lives of others, you have no idea what they are fighting, if you looked at me and didn't know me you would never guess what it takes to make me walk head held high as if the world is filled with unicorns and rainbows for me.

Blessings to you all and bucketloads of love