Sunday, May 12, 2013

"Without treatment I can see no future for you"

Since December 2009 I have had diagnosis of ME and have been completely housebound since about June 2010. In the last 18 months I have seen many of my local Facebook friends who also have ME get diagnosed with Lyme disease. For a long time I kept thinking ‘no, I couldn't have Lyme because I don’t ever remember being bitten by a tick’. Over time as I picked bits and pieces of info from people the doubt started to creep in, maybe I do have Lyme. So why not have an appointment with a Lyme literate Doctor and find out? Well there are only a handful of them in Australia and none of them were anywhere near me. It’s made very difficult for Doctors here to consult with a patient over the phone or via Skype unless you have had one initial face to face consult. So it was just impossible to talk to a Dr who could give me the answers so I just put it out of my head.

A Lyme Doctor whom a few of my friends were seeing moved his practice a little closer, still an hour and a half’s drive but maybe there was a way. Who was I kidding, I couldn't even tolerate the 5 minute car ride to my local GP! Then something extraordinary happened …. A friend spoke to the Doctor on me behalf and he agreed to drive the hour and a half to come and see me at my home. This is completely unheard of in this country. He spent an hour with me and by the end of the consult he seemed pretty certain that I did in fact have Lyme Disease.

He ordered a mountain of blood tests, mostly regular stuff but he needed to get the whole picture because a Lyme diagnosis is a clinical one, it does not come from any one test. My results came back eerily clean for someone so ill. There were however two things that stuck out. My CD57 was quite low (CD57 is an indicator of how a specific part of the immune system is functioning) and my testosterone was very high. Low CD57 is commonly seen in people with Lyme so this clue helped to confirm the good Doctors diagnosis. The high testosterone was just odd and didn't really correlate to anything … but I suspect in time it will make sense.

There are several actual ‘Lyme’ tests available. None in Australia really give an accurate result. There is one in Europe and one in USA which are preferred options. The problem with these though is that they are dead expensive and still do not give an accurate results for many reasons. One reason is that these are blood tests, and the Lyme often move into the tissues and don’t live in the blood, so looking at blood is not going to find it. We decided to send my blood to USA at a cost of over $1000. If it came back positive we would know for sure we were on the right track. If it came back negative we would just have to keep assuming that we were on the right track.

My test came back negative. Not what I was hoping for but bad luck I guess. After receiving the result the Doctor said to me that he is certain I have some sort of stealth infection, probably Lyme or something similar, so we should move ahead with treatment plans. He said ‘without trying treatment I can see no future for you’ …. That statement really hit me hard. I think even though I have been so desperately ill these last 3 years I have still been in denial about the fact that this will be my life for ever. Who wants to exist like this for ever? Treatment is always a risk but what choice do I have really? Currently I am relying on my parents and a friend to survive. They do everything for me that I cannot, and the list is long. Perhaps we can limp along like this for a few more years but then what? My parents are in their 70’s and my friends health is also not good. I need to put on a brave face and just leap. Treatment may make me well, it may make me sicker, it may kill me …. But I have to do it.

The Doctor is talking IV antibiotics. I have another consult with him this week and will discuss further …. So stay tuned for part two!


  1. Those are certainly incredibly confronting words to hear. Perhaps sometimes we need confronting though to spur us into action? It can be so easy to be paralysed by a fear of anything we try making things worse. Considering you are so so sick I am not altogether suprised at the negative result, I'd be very interested to see the detailed test report and also to see what they might show after a few months of treatment. It's so hard...I'm not sure what I would have done if my results weren't clear, that was something I desperately hoped wouldn't happen.

    Beyond grateful that we have a doctor who will go so far out of his way to help us - one who truly epitomises what a doctor 'should' have as their central focus: his patient's wellbeing.

    Thinking of you lots at the moment. XXOO

    1. Thanks. I dont yet have a physical copy of my Igenex results and cant remember if I acme up with any bands etc. But when I get the actual bit of paper i will post it :)

  2. Hi Lee Lee,

    I will follow your progress. I've been diagnosed with Lyme (among many other things), but I have been operating on the (seemingly) Occam-friendly hypothesis that chronic Lyme is a variant of The Pandemic with different opportunistic infections. At one point Burrascano thought the same thing. Without adequate research, I don't know, however.

    I'd like to know what proportion of people who, for example, meet MEICC++ (i.e. very strictly meet MEICC and in addition have almost every sign and symptom that is described in the Carruthers et al. MEICC paper) do well on IV antibiotics.

    Thanks for keeping us up to date on it.

  3. This is a story of hope and persistence and determination. There are only actually two ways of 'being' either you are alive or you're dead!! Seeing as you're alive, you're taking the risks to find wellness. I congratulate you and look forward to hearing your progress - whether it is slow or not or you crash, you are being proactive coz the life you have is almost unendurable.
    Remember this friend is willing to be there.....


  4. Oh honey. I so understand. Although the fear of treatment was different for me. For me it was a no brainer, but I had already resigned myself some years ago to this life.

    So for me it was thirty years of living in severe suffering, if I didn't opt out sooner..... or bravely risk treatment on the gamble I might get some of my life back. It was a huge leap but the alternative was worse.

    I'm glad that you are starting to feel more resolved with your decision.

    Big love xxx

  5. If IV antibiotics was a sure-fire way of curing ME then we would all be doing it. Offering a treatment that makes some patients better and some worse is very hard.

    It can be easy to be convinced by doctors when we are so ill and so desperate. I've spent over 25 years going from doctor to doctor trying different treatments. It's left me worse off physically and poor.

    I'm one of the people who has lost a lot on the gamble of trying new things. One of the pioneers who picked up the early antibiotic regimes and did more than one of them.

    Hard decision and I wish you all the very best. There are so many treatments that could make up better.

    At the moment I'm putting my money into something that isn't making me worse. That was just luck though. No doctor drove out to try and convince me I wouldn't get any better unless I tried them.

    Luck and money was finally on my side in a minor way. When we have failed on the cheap options we go to potentially failing on the expensive ones. Also the risky ones.

    My advice would be to find out what the risks really are. How many people are having a bad reaction from one infusion and how you can minimise the risks and the bad effects.

    Find the people that it didn't work for and ask if you can. When I tried AB's no one told me how bad it would be and for how long. I see that the advice today is still the same and the things people suggest that didn't work for me are still being suggested to try and ease the side effects.

    Feel free to ignore this advice if it doesn't help.

    Hope you have some luck as well. You deserve some.

    1. thanks, thats all good advice and i will take it all onboard.

  6. Blimey what a hard decision....but in the end, what choice do you have ? All you can do is research the options, look at the risks and then choose and JUMP ! Risky but you can't stay as you are :(

    I have some idea of what that doctor's remark feels like. In 2006 the only M.E. Specialist I have ever seen told me she could never see me returning to work. At that point I'd already spent 30+ years limping along, somehow hauling myself out of each relapse to struggle back to work and then she said that would never happen again. She was right and, deep down I knew she was right, but the actual spoken words came as a shock.

    We're all thinking of and supporting you in whichever decision you make x

  7. Wow what tough words to hear! I tell you - extreme sports have nothing on us & the day to day challenges we are faced with. Kudos to you Lee. With all due respect I think the good Dr underestimates your courage and resilience :)

    Try not to think too far ahead either way. Just make the best decisions you can each day, and trust that that will lead you forward. love Karyn xoxo

  8. So glad to hear you have found a new potential path to follow and try out. Best to exhaust all options. I got diagnosed with Lyme with a new blood test in the US that cultures for 2+ month. The test isn't vetted and is pretty controversial (and I also have no memory of ever being bitten), and I was really hesitant to start taking antibiotics for 1-2 years for a disease I wasn't even quite sure I had, but I came up positive and since starting treatment and following my doctor's instructions, I've felt good changes and have high hopes for the future. If you decide to give the treatment a try, I really really hope this helps you too! Hugs :)