There and Back Again, Our Lyme Disease Journey.

I'd been meaning to do a Lyme Disease post one day, just to explain a little why I get so damn excited about all the fun things I am getting up to these days, and to maybe help just one person not to have to go through what we did.

Then I sat down to write a submission to the Commission into "Lyme-like illness" that our Australian government is currently holding.  It was our story that I wrote, and I think it is quite perfect to post here. 

It's not fluffy, or pretty, but it's what happened.  It has shown us the depths of our strength and given us confidence that we can handle anything that may come to pass in the future.  It was a very hard time.  

I'll understand if you pass it by, but for anyone who wants to know more about what it is like to have Lyme Disease, or who wants to know a little more of my back story, here it is:

I am not sure when I became infected with Lyme Disease.  The first tick bite I remember is as a teen, and I still have a lump on my leg where I removed it.  Since this disease can remain under cover for a long time, I will probably never know exactly when I first came into contact with it.  I did travel overseas in 1996, but only to the UK and the city of Rome. 

I do know that in 2001, my husband and I were bush walking in Chidlow, WA, where we lived, and we came into contact with a mass of what the locals call ‘pepper ticks’ but which we know now were probably an early stage of the local bush ticks that had just hatched out.  They were tiny, and we both had many on ours legs to remove.

Not long after that, we experienced a very stressful event and we often said that after that the sunshine went out of our lives.  At the time, we didn’t realise it, but I think now that that event had lowered our immune system enough so that we became vulnerable to multiplication of the bacteria Borrellia and its co-infections.

For the next ten years, we both struggled to keep going, as we slowly had to cut more and more things out of our lives just to manage. My husband was about a year behind me with symptoms.  

We were both diagnosed with CFS. I developed Pernicious Anaemia and Hashimoto’s Thyroiditis.  My husband now has Diabetes and high blood pressure.  I became more and more affected by the chemicals of daily life.  My husband had terrible headaches and sores on his skin.  I developed bad anxiety and my digestive system became a mess.  We were both brain fogged and desperately tired and sore all the time.  Our lives became almost unbearable. We received no help from the medical people we saw, and felt abandoned by them.

I could no longer work.  My husband managed to keep working four days a week, while I tried to keep the situation at home together so that he could come home and just rest at the end of the day and hopefully recover enough to go to work again the next. There was no spare energy for anything but survival.  There was no joy.  We often contemplated and discussed suicide.  

In 2001 when this all began, we were both fit, keen blackbelt martial artists.  I owned and rode a horse.  We had two very lively dogs with which we had long walks and training sessions every day, and competed with in active dog sports on weekends.  We did many other social and sporting activities, including teaching at a local community school and helping to train beginner dog owners at our local dog club.  Our days and weekends were full.  We were valuable and active members at all levels of our society.

It took us a long time to succumb totally, but by 2006 we had hit rock bottom.  Some days I could barely get out of bed. My husband often eyed off trees on the way home from work and thought about driving into them.  After one particularly rude, dismissive doctor, I came home and told my husband that I could no longer keep fighting, that I wanted to just go to bed and stay there till I died. Life had become nothing but suffering and struggle.  I’d had enough.

It was only my husband’s belief in me at that time that kept me going. “This is not all in your head.  This is real. We need to keep fighting and we need to become proactive,” he told me.  His faith in me gave me hope.  It was a turning point for us. We began to research what this malaise could be that was so wrong with both of us.  We found a good doctor who helped us support our bodies and believed in us, which gave us just enough energy to keep going as we began our journey to knowledge and health.

So we limped on, improving in some ways and never getting as sick as some people with Lyme Disease do. We attribute this to how fit and healthy we were when first we got it, to the types and locations of the infection in our bodies, and to the research we did that helped us support our systems, which helped our own bodies to fight down the infection.

Nonetheless, in 2011, I had a year from hell.  The chemical sensitivity had continued to worsen despite all our efforts, and I had a reaction to a Sulfa antibiotic that gave me panic attacks and body storms that slowly faded as the year went on.  When they were happening, I’d have happily died to escape them, and I never knew when or for how long another one would come.  It was hell on earth. What that very bad time did do, though, was lead us to begin more research, and it is then that we found Lyme Disease and considered the possibility of it being our problem.

There was no Lyme Literate Doctor in WA at that time.  We Skyped with a US doctor to get tested at Igenex in the US.  My tests returned with enough positive bands for me to be content that we were on the right track.  Hubby wanted more proof, so we tested him at Infectolab in Germany and got a positive.  

We knew we were onto something, so we did more research.  I reacted to the herbal treatments that our US doctor wanted us to take, so I had to stop.  My husband continued with them.  I found the Salt/C Protocol, which has been a wonderful treatment for me, as it was the only thing I could tolerate.  Our recovery has been very slow, but steady.  At no time have we used an Australian doctor for anything but support for our secondary symptoms. 

Right now, at the beginning of 2016, we are really seeing the light at the end of the tunnel at last.  In the past few years of steady improvement, we have begun to be able to work, to socialise, to enjoy hobbies, to join back into our community, even in as active a role as volunteer fire fighters!

The joy of all this!  It is only truly able to be understood by others who thought their lives would be grey survival forever, and who many times over wished for the release of death. It is like being reborn again!

I am writing this submission in the hopes of helping others to avoid the dreadful descent into a life of pure suffering that this “Lyme-like” illness brings.  If only a doctor had recognised our symptoms early! I still remember taking my list in and expecting such a comprehensive list of symptoms to make it easy for that GP, but instead I think he decided right then that it was all in my head and wrote me off.   Knowing what I know now, and if he had known it too, he’d have seen that little light-bulb and tested me for Lyme Disease then and there, and even been able to diagnose it from my list of symptoms, whatever the very ineffective ELISA test of the time showed.

If our local GPs had been educated and open-minded, we wouldn’t have lost more than ten years of our lives.  Society wouldn’t have lost more than ten years of us being useful members. We wouldn’t still be dealing with the secondary issues that came about due to all those years of undiagnosed, untreated infection. Issues that we may never be free of.

We consider ourselves very lucky indeed that my husband continued to be able to work enough to keep our heads above water financially, so that we at no time have had to rely on the system to help us. What we have seen happen to others we have met through our Lyme journey has horrified us.  It is dire enough to feel so very bad; as one person put it, “To be brought to the brink of death and left there for years,” but to also at the same time to be trying to get a diagnosis in order to get benefits, while seeing doctors, spouses, friends and family disbelieve you and turn away from you, well, it breaks our hearts.  The loss of Theda Myint was particularly sad for us because we had come to know and love her very much, and her suicide was so very close to home. Theda was exactly the sort of young person this country needs, and we failed her, and have lost her forever. 

I want people infected with this Lyme-like illness never again to feel so alone and abandoned as we did, as Theda did.  I want our country to believe in us, to value and support us. I want the medical fraternity to stop thinking any illness that is not easily diagnosed is all in our heads.  I don’t think that is too much to ask. 

Happy, useful, Lyme-free Tina. What a joy!