Still on that boat…

Strawberry blonde in a dizzy world!

Having a pants time!

January25

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Well that appointment was rubbish. I started to deteriorate again after coming off the antibiotics which to me made me think that this was the key, I just need to be on them for longer. After getting my hopes up that I’ve finally cracked it I left that hospital absolutely devastated not feeling like I had that many options.

Hangmans-noose[1]

I was told that three weeks antibiotics was sufficient to treat Lyme disease (very controversial) and was discharged from their care. I did argue about guidelines being just that, guidelines and that surely treating according to how the patient responds is more important but it fell on deaf ears. I felt completely ignored, the decision had clearly been made before the appointment and It really didn’t matter what I said. I am being referred to another doctor who has more of an interest in Lyme but the earliest appointment is April and I was led to believe that his treatment (or lack of it!) would be the same. What am I supposed to do until April, haven’t I wasted enough of my life?

waiting[1]

Fortunately my GP is really on my side and has given some good advice. I feel better now that I have been proactive and contacted some people more experienced in Lyme explaining my story to see what their opinion is. I can’t accept that this is it for me!

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So I have been pretty low (to put it mildly) but managed to distract myself with my sisters Christmas present to me – a polka dot knickers making kit! I think pants pretty much sums it all up nicely!

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6 Comments to

“Having a pants time!”

  1. Avatar January 25th, 2015 at 8:54 pm Snowy Says:

    Nice pants! Sorry about all the crap – fingers crossed for a new specialist.
  2. Avatar January 29th, 2015 at 8:01 pm Emma Says:

    Is it worth seeing if you can pay privately to see the guy for an initial appointment? I found £100 meant I could jump the NHS queue (wait went from 12 weeks to 2 days) but then all my tests were done by the same consultant in the NHS. Not strictly morally right, but it sped things up. Good luck x
  3. Avatar February 12th, 2015 at 2:06 pm Susan Cartwright Says:

    Well it turns out the NHS pulled the funding of his clinic so you can’t see him no matter what you pay – the fun continues! I have since found someone else who may be help and yes I’ll be paying for that. It’s very expensive being ill!
  4. Avatar January 30th, 2015 at 8:58 am Jan (A gluttonous wife) Says:

    Bloody hell Sues…..keep searching honey!!! I’m totally off the beta-blocker, what a horrid 2 weeks of withdrawal that was, but now coming off the amitrip, but have been feeling like a fog has been lifted and definately have more energy…but not cured by a long shot!! Sorry I’ve been crap on the email, but still there anytime for a natter and always can find us a laugh.

    We have to keep looking for answers as it’s in our nature…you are a strong cookie!!

    love Jan x
  5. Avatar February 12th, 2015 at 2:09 pm Susan Cartwright Says:

    I so sympathise, withdrawal is not a very fun pastime! I’m glad the brain fog has lifted though, I feel like that since coming off the pregabalin. These drugs really seems to do more harm than good sometimes. You take care xx
  6. Avatar February 19th, 2015 at 10:33 pm Emma Says:

    Who are you seeing now then? Hope the wait isn’t too long x

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Hi, My name is Susan and in 2010 I suddenly got very sick with vertigo and extreme fatigue. My life as I knew it changed forever. I had to leave my job as a junior Doctor to move back home with my family as I was unable to look after myself, let alone other people. It took a very long time, about 2644 doctors visits and ALL the tests to be told ‘congratulations, all your results are normal there is nothing wrong with you’, which was the most devastating news of all as there clearly WAS something horribly wrong, we just could not identify it.

 

Eventually, I was diagnosed with Chronic Lyme Disease which was great news as I finally had a reason to feel so ill. That was until I realised that there is no real recognised treatment and I was once again left to trying to navigate debilitating symptoms alone. More doctors, more tests, protocol after debilitating protocol and plenty of ‘ah ha’ moments later I finally started to heal. It was quite the journey and I have learnt a lot about what treatments are out there, and perhaps more importantly, the body’s amazing capacity to heal. I am now in a position where I want to help others to reclaim their health.

 

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