Week 5, over and out

That’s it, I’m all done with treatment. I’m sat here in my apartment writing this blog entry, and in just over 4 hours my taxi arrives to take me to the airport.

In the last 5 weeks I have been poked, prodded, manipulated, magnetised, repeatedly stabbed with sharp things, watched as my blood was repeatedly removed and replaced (and sometimes thrown away), yelled out in pain, almost fainted, I’ve had monstrous herxheimer reactions, and had a lot of things shoved up my rear end.

But I’ve also laughed, and laughed a lot with the many new friends I’ve made here who are going through the same things, the same pain, the same crappy health, the same life experiences, and more. Having people around who truly understand the utter misery that Lyme Disease brings to your life is deeply uniting. It’s impossible for anyone to really understand what it’s like unless you have it, but it’s not something I would remotely wish on others.

In many ways I feel a little lucky because while I thought I was pretty sick, there are others going through even more debilitating symptoms. Some are very limited in mobility. Some have seizures. It makes it all the more impressive that people world-wide have to spend a lot of money to come here, often with very long flights like me, and fight through the pain to keep coming in to the clinic, day after day.

When I get back I do plan at some point to immerse myself into the advocacy side of Lyme, putting more pressure on the Australian government to do something about this debilitating infection, rather than sticking its head in the sand and claiming nothing is wrong. The very fact that nobody gets better in Australia until they come to a clinic that specifically treats Lyme is damning. I truly believe that this is a scandal of AIDS-like proportion waiting to happen, which is even possibly a reason why it’s getting suppressed at every opportunity as there will no doubt be prosecutions.

This is a picture that my friend Graham Binns took for me while visiting here 2 weeks ago, which features Australians who are travelling to the clinic. It has so far appeared in the LDAA newsletter, but I may take it to my local MP and or Senators when I have full energy back.

Anyway, you’re probably wondering how I’m getting on after 5 weeks. Let me start by saying that 6 weeks ago I posted a symptom checklist like this:

Symptoms and Severity

SymptomRatingNotes
Fatigue8This varies from day to day but is generally bad. I can wake up in the morning and not feel like I've slept at all, and it's a struggle to move.
Joint/muscle pain6-8Arthritic-like symptoms. Knees especially hurt when kept bent, which is a huge problem on planes.
Headaches7Come and go, but when they come they bring the next symptom:
Brain fog8When it comes, I can't think straight for even moderate tasks.
Memory loss6Occasionally bad, mostly people's names just disappear.
Heart/chest pain/palpitations6Used to be a 10 but home ozone has helped a lot.
Tinnitus9Constant ringing. I can sometimes block it out but it's always there
Insomnia9Can nod off on the sofa, go to bed, and then lie awake all night.
Nausea/Dizziness/Balance problems5Comes and goes
Twitching4Sudden unexpected muscle spasms and twitches, pretty random.
Psychiatric7Sudden depression, anxiety, mood changes.
Nerve pain4Hot/cold/tingling/numbness

I’m going to re-score it when I get home, but suffice it to say I felt pretty crappy. When I first got to the clinic I was exhausted from climbing the stairs between floors. My muscles ached, I had no energy, and my joints creaked.

The picture below is what I was able to do on my very last day at the clinic. I think it says it all.

While this looks pretty good, there is still a lot of work to do. I expect even more gains in the next few months as my body repairs itself now that (I hope) the infection has gone.

I want to say THANK YOU NeoMed and all the clinic staff. The standard of care is SUPERB. The clinic was clean, well equipped and full of caring and fun staff, whom I will remember fondly forever. I cannot compliment it any higher. I was very happy to provide my services for free to do some photography for the clinic before I left. You’ll see those pictures soon!

Also a huge thank you to my friends Gavin, Graham, and Jeroen for making the effort to fly 4 hours each way to get here to see me for a weekend. You put a huge smile on my face just as I had been going through a rough treatment period. You guys rock!

Shona and Glyn, also thank you for coming out to see me, it helped me put a smile on my face when I didn’t feel like smiling.

Lastly, but most certainly not least, I want to thank my father John for coming to Cyprus and being with me the whole time, because I could not have done this alone, and he helped me more than he realises. This is one of the few pictures I have of him not eating or drinking! (Well, about to eat…. LOL)

This entry was posted in Lyme, personal, Uncategorized. Bookmark the permalink.

Leave a Reply

2 Comments on "Week 5, over and out"

Notify of
avatar
Sort by:   newest | oldest | most voted
Roger Balettie
Guest

I know the recovery road ahead still stretches before you, but what a great start!

Liza Cannavo
Guest

Great summarization Big Guy – it’s been fantastic reuniting as ‘clinic buddies’ once more. Keep up the protocol and expect one or two questions from moi!
And ‘Papa’ did a superb job keeping us all focused on the job at hand, with friendship and laser quick wit thrown in with a dessertor two!
You Ewards Boys made my journey a whole lot easier Xx

wpDiscuz