Still on that boat…

Strawberry blonde in a dizzy world!

So now what?

January28

Well the appointment was not all that positive unfortunately. The Specialist admitted that he would have expected to see some improvement by now and his options are limited. He doesn’t feel my body can handle any more antibiotics at the moment so has given me some more herbal remedies called Byron White formulas. I wasn’t exactly thrilled but it was better than nothing and I don’t exactly have a lot of other options!

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He pretty much confirmed that if these don’t work (and lets face it I feel it’s pretty unlikely!) I need to look at going abroad for more intensive treatment, but no suggestions as to where. We are rather limited here, what with half the profession denying the illness even exists not really helping the matter. I had a conversation with a Professor who readily admits that I have a pathogen of some sort causing my symptoms (he treated me for Lyme) but feels that the antibiotics I’ve had already would have treated ANY pathogen so now I have a ‘Post Illness Syndrome’. He feels that my best shot is neuro rehab despite the best neuro rehab in the country saying it would be futile as she has worked with me for years and seen no positive effect. Where exactly does that leave me!?! The words ‘creek’ ‘shit’ and ‘paddle’ spring to mind!

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So now I’m looking into treatment abroad. The big barrier being money, sitting on your ass all day doesn’t exactly pay well 😉 Neither specialist has any suggestions of where to go so I’m literally Googling ‘Lyme treatment’ and stalking forums. You never know old Byron’s concoctions may even do the trick!

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2 Comments to

“So now what?”

  1. Avatar January 29th, 2016 at 11:16 pm Snowy Says:

    Wish I could find you a paddle. Hold in there.


  2. Avatar February 26th, 2016 at 8:05 pm Emma Says:

    How are you doing now Sues? Not seen an update for a while X


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Who am I?

Was – independent, intelligent (with plenty of dizzy moments), successful, busy, funny (depending on how much Prosecco I and the people around me had!), quite stressed out but overall happy, without even realising how lucky I was.

Now  – ? just a mess really! I was diagnosed with Migraine Associated Vertigo (MAV) eight years ago when my life changed dramatically. It’s a variant of migraine that means I feel dizzy and tired nearly all of the time. If I try and do anything ‘normal’ this sparks of vertigo which gradually gets worse and worse until I pass out unless I lie down for hours, sometimes days. What this means is I spend 90% of my time in bed in a quiet dark room. Normal activities like shopping, walking, going anywhere bright or busy, the cinema even visiting friends who have patterned wallpaper or a gravel drive is a nightmare!

I’m continually trying new medications, all of them with quite nasty side effects (worsening of vertigo, weight loss, hair loss and sense of humour loss to name but a few) to try and find the magic one that will work for me. Fingers crossed the one I’m on now will work, time will tell.

A good friend set up this website so I could become a ginger whinger. No I’m kidding, so people can understand what I’m going through and maybe it would help me to have a bit of a rant. I have quite a dark sense of humour, I think that’s the only reason I haven’t gone completely bonkers! I clearly don’t have the most exciting of lives but I live in a small village with some entertaining characters and I’m always having blond moments (I blame the meds but I’ve always been a bit dappy!). Who knows I may even get better, and I can assure you life will be filled with amazing adventures then!

Scrap that! After zillions of Consultants all saying that they know what’s wrong with me and that they can get me better. Endless drugs and procedures I was finally Diagnosed with Chronic Lyme which was great – until I find out that nobody in the UK has a clue how to treat it. That complicates things some what 😉

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