Shirley's Journey 2 Lyme Recovery

"WE HAD THE WORLD AT OUR FEET... NEVER IN A MILLION YEARS DID I EVER THINK THAT ONE LITTLE INSECT BITE WOULD LITERALLY WIPE ME OUT AND DESTROY MY LIFE"  Myself and my husband met whilst volunteering in an orphanage in Kenya.  Romantic isn't it?  Maybe? Until it all took a downward spin not long after....... As the saying goes....... Here's My story  My name is Shirley Moran Breslin. I'm from Athlone in Ireland and married to Enda Breslin from Sligo.  I was diagnosed with Lyme Disease in 2015. Simples! Eh? Easy to get, not so easy to get rid of. I was bitten in 2010 and developed a bulls eye rash which I now know is a typical sign of Lyme Disease.  As it was a Sunday I went to a chemist, my leg was swelling and had a 'red ring type rash'. I was told this was a normal reaction. I decided to go to the Dr because it wasn't reducing and it was starting to go black in parts. My Dr wasn't worried about the rash and prescribed steroids. I now know this is a No-No.  The rash wore off and I forgot about it. About 6 weeks later as I was driving home from work I heard an article on the radio about Lyme Disease. The girl that was talking about this was pleading with anyone who had received any bites that resulted in a rash to get tested to be sure they didn't go through the same as her. I was intrigued, what is this strange disease? The rash I had on my leg sounded like hers. I told Enda about this poor girl on the radio. Curiosity got the better of us and we looked up details on the internet. We were surprised to see 'a perfect match' to the rash I had. We chatted more about it and I decided to get a test done in a clinic in Dublin. As any sensible person knows Prevention is Better than a Cure! There was no point discovering when it was too late that some simple antibiotics would have stopped an infection in its tracks.  Off I went for a check up, it'd do no harm anyway. I'd done quite a bit of travelling and having a check-up would be the sensible thing to do. And boy am I sensible! I had the test done it was subsequently sent to France and returned negative. Happy days. At least I've done the right thing. What I didn't know was that I went for this test too soon as it can take time to develop in your system.  After a few months I began having muscular skeletal problems. All sorts of strange and not so wonderful things were happening to me. Things like not being able to turn a key in a door, loosing power in my hands. This can be quite scary. It happened one day while taking a roast chicken out of the oven. Only for my mam rushing me into the shower I'd have had some pretty horrible skin damage on top of everything else.  Anyway, I went for all kinds of tests imaginable. After some poking and prodding by different professionals I ended up being diagnosed with Fibromyalgia. I had to educate myself about this! I even tried a clinic in Australia on a visit. Perhaps they could help me?  I was trying every avenue I could think of. I was baffled. I felt I wasn't getting relief from different medication I was being perscribed.  The exhaustion got progressively worse with each week that passed. I was having severe night sweats, memory loss, confusion, loss of balance/coordination, feeling hungover.  What a great start to married life....  Is this what being married does to a person? (Lol) I started to get muscle spasms in 2014 which were extremely painful. I couldn't go anywhere without making sure I could rest or else I couldn't get out of bed with pain and this extra tiredness. This wasn't the same as just being tired. It's like every cell in your body has no energy whatsoever.  I thought this was in my head. Maybe I was just lazy. I couldn't exercise. I gained weight even though I wasn't eating huge amounts of food. I'd no appetite.   Time passed and Enda broke some ribs. This ended up being a 'God Send' as on a visit to a physiotherapist he asked about any treatments or therapies that may give me some relief. They ended up discussing Lyme Disease. Enda explained I'd looked into it and had a negative test etc. When he came home we decided to look at this again.  I had changed Dr to a lovely kind and understanding GP.  I did this as my original GP more or less told me not to bother him. I arranged for a new blood test and waited for the result. Whilst waiting I did some more research and ended up contacting an amazing family in my home town (Athlone). They gave me great help and solid advice. I'll forever be indebted to them. Part of their advice was to have comprehensive tests done through a German laboratory. The testing here in Ireland is used more for a screening basis therefore inaccurate in the majority of cases. Hence, the vast number of negative results.  In the meantime my results did come back negative through the Irish lab. Then I sent off bloods to the German laboratory as recommended.  These came back positive.  Now.... What is one to do? We needed to look into treatment. We looked at options for a consultation. We chose the BCL Clinic in the Czech Republic for early January 2015. The main clinic couldnt give me an appointment for 9 months. I was deteriorating with each week that passed. I needed to see what was advised and possibly start treatment asap. At this stage I was having difficulty in walking. My speech was starting to be affected as well as my co-ordination. I was having difficulty reading. The muscle spasms were awful. As well as chronic fatigue, pains in muscles, joints and bones. As well as a myriad of other symptoms. Three weeks later we went back out to start the compact/intensive treatment. I'd a schedule for 3 weeks, having already started a number of supplements, more blood tests etc.  The staff at the clinic were absolutely amazing. They treated me with such dignity and respect. We ended up spending an extra week for continued treatment as part of the Dr's advice. A number of return visits were arranged for check-up appointments to monitor/alter medicines as needed. I also needed to have regular bloods and ECG tests with my own GP at home. Even though I could be quite sick at times, I was making progress. We continued travelling over and back until early 2017. I received an email from my consultant to say the clinic was closing down. This was a devastating blow for us to receive. I was inconsolable. I felt I was doing relatively well but knew I still had a long long journey ahead to reach any decent quality of life. Now faced with a new dilemma. What was our next step going to be?  I continued with the schedule of medication I had. I tried alternative therapies. Healers of every description. I'd do anything. With help from a lovey lady I completed 3 months of hyperbaric oxygen sessions, this can often help with MS type symptoms.  I had to try everything... Anything.... Alongside all of the treatments and therapies, I was (and still am) attending a pain specialist in Galway. Again, I'm so lucky to be able to get this treatment. A fantastic Dr with a great team in tow. I receive infusions/drips and injections of the drug Lignocaine. In order to try and control my everyday pain I'm also on very heavy doses of medication. Recently this has had to include injections into my sacroiliac joints in theatre. Again, I'm privileged to be in a position to get this pain treatment all thanks to help from my wonderful parents.  From about last November I started to regress. Symptoms I felt had calmed now returned with vengence. This blasted disease was letting me know it was out to get me. I can often sleep for 17+ hours a day or perhaps go through 3-4 days of no sleep whatsoever. You may think its a case of 'oh you've had too much sleep and your body is trying to adjust itself' but that's not the case.  I have no control over my body as to when I sleep or wake. I have severe day and night sweats. These cause me to have to change clothes many times during the day and night. Often having to use towels in bed. It's not pleasant.  In one way I dont like telling my story as I feel like it's a big long moan. I try not to complain if at all possible and anyone who knows me would say I'm an optimistic person. So now here we go again, we have no alternative but go abroad for treatment.  I've researched different Drs and clinics. We've been following patient cases and have decided to travel to Cyprus. We have to leave soon so I can start a very intensive treatment programme initially for 5 weeks.  Going abroad for treatment is not something that's taken on lightly by anyone. Nobody wants to go to a strange country. Leaving your loved one's behind to worry about you is very difficult. After a lot of research, contacting clinics and patients, discussions with family then there's the monitory side of things.  I'm now on an invalidity pension and my husband is self employed. Not only has my income reduced dramatically it also means Enda has to close up his crash repair business. He has to accompany me to the clinic on a daily basis. Saying that he's essentially my carer here at home anyway. Its not easy on him trying to keep everything going from week to week. I can only imagine how he feels. We had the world at our feet. I loved my job, Enda started a new business, we got married and decided to wait a year to go on honeymoon.  The honeymoon came around and I could barely walk. Enda had to sit in the hotel room with me like a corpse bride. Not knowing when I'd wake up and all the while we knew that when we returned home all we had ahead of us was treatment and bills,bills, bills. But we'd do anything to get a sliver of the life we had. As I can only deal with this at hours at a time I cant plan to meet friends even for a cup of coffee and a chat. Thankfully we have fantastic support from family and friends. There's little or no help for people with this disease here in Ireland. For the last few years Doctors from Germany, USA, Holland etc have been coming over to Lyme Disease Patient Conferences here. All at their own expense in order to try and spread awareness, help with testing and any information they can relay to us. Really and truly we should have facilities and dedicated expertise here to deal with the disease.  This is not a disease that you just get abroad. Its here, its now and its very very real.  Lyme Disease totally and utterly destroys peoples lives. It doesn't discriminate, it affects both adults and children alike. Thank You to our families, friends, communities near and far for your continued support.  It's true that you really know who matters in times like this. Thank you for taking the time to read my story. Shirley Moran Breslin Should you find you have been bitten by a tick (or any blood sucking insect - Mosquito's, horse flies etc) and develop a bulls eye type of rash please take a picture, go to your GP and get antibiotics, take them and continue for a minimum of 6 weeks. There are many websites with information on removing a tick and or the diseases that can be transmitted by insects etc.  You don't need to tell any farmer or vet how dangerous tick bites are to livestock. They can get 'red-water' which can be detrimental.