Talking about Nature's Dirty Needles

There is a saying that one cannot talk about something if you have not walked a mile in the shoes of someone who has experienced it themselves. Well, I have had Lyme disease myself. I have had it for 25 years before it was found in my blood. And I had all the tell-tale signs.  I had the tick bites after hunting in Africa – Yes, it is also one of the countries in denial although many university research papers have found lyme spirochetes in animals roaming around. I had the bulls-eye rash, the typical tick bite fever and excruciating headaches, but it was seen as me being a very difficult teenager.  Apart from me really having a frail health system, I had Bell’s Palsy, lost my gallbladder, and finally ended up with a questionable multiple sclerosis diagnosis.  It was when I got a diagnosis for fibromyalgia that I completely lost it and decided to investigate these bizarre health problems of mine. 

Thanks to a friend who was on treatment for rickettsia she realised that I may have had a herxheimer reaction towards tetracycline instead of an allergic reaction as was noted by doctors and for which I was wearing a medic alert bracelet. During my research into rickettsia I first noticed that my symptoms and health problems were exactly the same as the Lyme disease I read every now and again.  I went to my GP not knowing how the medical fraternity felt about the “L” word I asked him if it was possible that I could have lyme disease. He got so mad that he threw my papers across the table, telling me how crazy the world is and that there is no way I have it. This was my turning point. I decided that not all doctors knew everything and bless their dear hearts – they may be quite frightened of the truth. If you cannot tell me what is wrong with me after 25 years, please do not tell me what is NOT wrong with me.

My teenage daughter at that time was a very good horse rider and a strong gymkhana competitor, but all of a sudden she could not even run at school. She would come home and sleep 3 days on end and had no interest in being a young girl at all. She was not a healthy toddler and was diagnosed with Lupus at one time, but apparently doctors make mistakes and as we moved from town to town the diagnosis changed. There was a period of absolute health, but after her sprint in the Pilbara things went downhill very quickly. We all had these ring like rashes under our arms, but with me working at a shelter we were just treated for ringworm – being from Africa you know (hint, hint)

I decided to up and fly to Sydney to see a dr who said he knew about Lyme disease. Tests were done and they came back positive with Borrelia as well as Babesia Duncani (the dangerous one). I have tested positive for Q-fever as well – this is a tick borne disease and is reportable in Australia. I actually tested positive with my GP, but he refused to acknowledge it. My husband tested positive for it as well. The health system just decided to deny it.

We had to return to WA and at this point in time there was only one doctor who started off very quietly treating patients.  I went to see a doctor closer to me and asked her to help our family through this journey.  I was willing to do everything and anything to get to a point of better health where I can feel like a normal human being again, but also know that I have saved my child from a lifetime of suffering.  A year into our treatment my eldest daughter started with late stage lyme symptoms.  I took her back to Africa for proper testing and although we decided to test her for African related tick diseases she also tested positive for Borrelia Burgdorferi on a Western Blot.

As a family we have been through a total of 5 years of treatment with each one being at most 3 years on continues treatment. My husband is the only one who has not tested positive to lyme, but he does have some rickettsia strains as well as the q-fever. My daughters got their health back and are proof that good treatment and early intervention can make an amazing difference in the process of understanding lyme disease.  My multiple sclerosis have gotten worse, but I do not show it in a disability yet. I believe it is still part of the lyme and my overseas doctors believe so as well.  My blood is completely clean of Lyme after treatment. There is not even an IGG reading, but my doctors state that is lying dormant in tissue and I will have to look at after my health in order to stay safe and not have a flare up. I may have MS and I know it is not genetic, and I know it could have been prevented, but I hope my story helps you to persevere in strength to find the right answer for yourself.  I had to fight for the correct diagnosis.  I had to then fight for a doctor to treat myself and my family. I did not sit and whinge at how unfair this country or any system is. I had to get up and do it myself.  I do feel better. Yes, I have a few lesions on my brain, but I can get up in the morning and do my everyday tasks. I look at my girls and I see how they thrive and enjoy life. This is the reason I did it.  My journey is not finished yet, and it may still be long, but it is filled with love, patience and perseverance. AND BETTER HEALTH