When Fibromyalgia is actually Lyme Disease

Exhausted Mums

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 ūüėČ

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?

NHS: Is it Fair That People/Children Without Choice Don’t Get Help?

My head’s disagreeing with itself.

It watched a program about the American situation with horror. ¬†There are children without homes, and not getting anything to eat when they go home from school. ¬†People are living in tent cities or storm drains. ¬†It was like something out of the middle ages. ¬†Of course, unlike us they don’t have the same degree of NHS and Benefits system.

Someone asked an American politician what he would do about a man in a coma without health insurance who would die without medical assistance. ¬†The Politician said ‘but he made the choice not to have health care’. ¬†So they pushed and said ‘So you are going to leave him to die?’, and again the politician said ‘he made a choice’.

I came away for the first time glad that our rate of tax is higher, and much more appreciative of our systems; despite the fact that at times I have wondered why I’m paying for a group of people (NOT all, just some) to do nothing and taking away their responsibility and ‘choice’ for sorting their lives out.

Then I watch a program about the growing problem of obesity in the UK and that the likelihood is that it will bankrupt the NHS. ¬†This makes me think that America must be really struggling with it already. ¬†For a start it infuriates me as no operation is going to educate someone or help them learn the skills they need to motivate themselves to take care of themselves. ¬†Why don’t people understand that you can’t help people to lose weight with diet and exercise only? ¬†Why don’t they realise that mindset and education are the most important things? ¬†So I’m not keen on the operation anyway and am pretty sure that mindset, education and exercise could be covered for less than ¬£50,000 (cost of the gastric band operation).

Then I hear stories about Bailey Sarwa, a 12yr old boy with Neuroblastoma cancer. ¬†During his remission he raised loads of money for charity. ¬†But now it’s back. ¬†There are treatments available for him in America or Germany. ¬†But ‘we’ don’t have the budget for it. ¬†So his parents are desperately trying to raise the money for him. ¬†Doing all the posts for #DoSomethingYummy over the last month has made me find out more about parents with children who have cancer, I can totally see why they are trying to pull out all the stops to save their son.

How can that be right?  He has no choice about being ill.  But the obese, alcoholics and smokers do have a choice.  How can that be fair?

My parents were alcoholics, my mum had lung disease from smoking, I smoked for 10yrs, I was overweight for years, my husband was overweight and technically obese.  I understand the problems involved in having an addiction.

But there is choice; Oh God, now I sound like that cruel American politician.

There’s no doubt that we know that over eating will kill us, infact according to new statistics, being obese is more likely to kill you than smoking or drinking; which is shocking. ¬†There’s tonnes of information all over the media about nutrition, hell even Jamie Oliver tackled it! ¬†So it’s no excuse to not understand the basics of nutrition. ¬†Admittedly mindset isn’t covered much, and even the personal training world doesn’t focus on it much.

Would I have wanted my mum to have no health care for her lung disease? ¬†My Dad died of cancer, which could have been associated with the alcohol. ¬†Would I have wanted him to die at home with no pain relief? ¬†Was I just lucky to learn the things I learnt about nutrition and mindset? ¬†Am I being overly harsh on these people, and not thinking of them as ‘real people’?

Or is it the budget that is wrong? ¬†Our governments (labour and conservative) ¬†spend stupid amounts of money on things that make no common sense. ¬†But the budget can’t be un-ending. ¬†We all have budgets, so we know the truth of that.

Is it all about sacrifices for the ‘greater good’; the idea that sometimes you have to make a tough decision because there is the potential that any money spent on a child with cancer, might be ‘wasted’ because they might still die? ¬†The cost of the treatment is really high, but there aren’t as many sick children as there are obese people. ¬†Children have so much potential to give to this world. ¬†Or am I just blinkered because I’m a mum?

I don’t have any answers. ¬†I’d love to know what you think?

Are you as confused as me? ¬†Or do you know something I don’t that will shed light on all this?


If you would like to know more about Neuroblastoma here is the link to ‘Families Against Neuroblastoma‘.

If you would like to donate to Bailey Sarwa’s appeal (every little pound counts), then you can donate here.