When Fibromyalgia is actually Lyme Disease

I’m sorry, it has all been a little bit about sickness recently hasn’t it?  Bit boring really, so I’m going to make this post succinct, and then move onto more interesting subjects for a while 😉

Some background: since June last year, I got really sick.  I’m better, but I can’t work full time, find it difficult standing up and haven’t regained my stamina or my cognitive ability.  I am managing to juggle the mum-kids thing better and the CBD oil is a big help.  But I am very up and down, and the only solution seems to be lying flat.  The girls at Espiritu are getting stronger and stronger, and taking more and more work off me; I’m very lucky.

I felt there was more to it than ‘stress’, I felt ‘wrong’ inside, and eventually shouted enough to get referred to a Rheumatologist.  I was really excited – someone who would actually know about Fibro etc and be able to help!   Hmmmm.  Not so much.  I saw her in November after waiting 5 months.  She was really grumpy that a Dr had dared to diagnose me without a specialists help, told me I didn’t have Fibromyalgia, did some auto-immune tests, and said if they came back clear then she didn’t want to see me again.

I don’t agree with her – my initial symptoms for the 4yrs previously were very Fibro, and I’m grateful I had a Dr who was aware of what they meant.

I do agree with her that the new symptoms weren’t – and actually I’d made the mistake of seeing a different Dr (you know how difficult it is to get appointments), who wouldn’t listen to me about that.  The good news was she referred me to a neurologist (I’m still waiting) and a physio (I’m still waiting).

I was very upset and down about it.  Why do we hope for help from the medical system so much, when we know how limited they can be as well?

I had been googling my new symptoms over and over.  Over and over one thing came up: Lyme Disease.  I was hoping that I was just jumping on the bandwagon – you know how we see an advert on the TV about stomach pains and immediately worry that we have cancer?  That’s what I was hoping.

Eventually I pulled myself together and went back to see my ‘right’ Dr rather than the first appointment available.  I felt silly.  But went through my symptoms with him again and asked if he thought that I might have something different.  Much to my surprise he agreed and said he wanted to do some research and would call me.  The call came with a recommendation to read Dr Horowitz’s book ‘Why can’t I get better’ (Warning: it’s a LONG, complicated book).

I filled out the questionnaire and was worried to find that I came out strongly as Lyme.  Then when I had a flare next I went back to the Dr, who was unusually down.  He confirmed that I have a ‘clinical diagnosis’ of Lyme – i.e. from my symptoms.  I’ve had the blood tests – they don’t point to any other weird illnesses.  They also don’t show positive for Lyme, but that’s a whole other story and political mess as ‘google says’ that they only work 20-50% of the time.

Bless him, I felt sorry for him – there isn’t anything he can do.  The NHS doesn’t officially recognise chronic Lyme, even though people die from it.  The official treatment is 2 weeks of antibiotics (I had 4 before Christmas and felt amazing, but the bleugh returned as soon as I came off).  The ‘Dr risks getting struck off’ treatment is 2yrs of double antibiotics, some intravenously.  I can’t afford the german blood tests that would prove I have Lyme (which the NHS would still ignore), or the £60k to be treated in Texas.  I didn’t have any ideas on what to do because the alternative options are so overwhelming, confusing and complicated.

But there is some good news.  It looks like Mr Taxman owes me some money, yay!  So I saw a Naturopath this week, who does know what to do.  I’m going to spend my money on her, rather than blood tests, as I’m more interested in getting better than proving to people who still think I’m stressed or need to ‘just get up and keep on going’ like they do.

I’m crossing fingers that you’ll see a much more positive post in about 6 months time.  When I get my head around understanding Lyme, I’ll write up about it too.

But for now, I think we’ll move onto more interesting subjects shall we?