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I am a 31yr old female. Me and my family are looking for help, we are getting desperate for answers and hoping you can point us in the right direction. My main questions are as follows but any advise is more than welcome!!
1. Where can we find a lyme specialist in the UK? (we are in surrey)
2. and how can we be referred for testing? (We are willing to go private if needed)
3. Also I have read a lot about the unreliability of western blot tests especially those done in the uk (I believe they are processed at Southampton) and would like to know about how to get the test sent abroad to be processed?
The reason we are asking is I have been increasing unwell since Easter 2013, and since May this year it has completely affected my life. I will try to be brief and chronological but it is a long story sorry.
I have always been a very active person and have travelled to many weird and interesting places around the world and worked very hard along the way. I have been living in Norway since October 2010 doing a mixture of waitressing whilst I learnt the language and arty/photography stuff. Easter last year I was between jobs and ending up living in the mountains in a cabin outside of voss for about six weeks to work at a hotel. I got sick with something like a very bad cold and swollen tonsils so I jacked myself up on flu meds and struggled through it. I returned to Betgen to start my new job opening a brand new restaurant and hotel but was still unwell with a bad cold symptoms, and very stiff sore neck (at the time I just put it down to job related) and a cough that was awful and wouldn't go away.
After some weeks I go so fed up that I went to the doctors (I wanted to be well for the demands of my new job) I ended up being sent to hospital and was admitted for 4 days as my blood pressure was very low but was discharged with no answers and told it was probably a virus (I think I had steroids or antibiotics IV but can't remember). I carried on working but was getting tired very easily and now had headaches along side the persistent neck pain. In October I lost my job as I wasn't performing well enough according to some of my colleagues. (I am a bit of a perfectionist and a high achiever - I have 2 first class degrees - so this was a first for me a came as quite a shock!) I was often very tired but plodded with life on anyway, I am not the type to give up. I spent Christmas with my boyfriends family and kept getting embarrassed by how tired I was (I'd fall deep asleep after dinner for at least two hours every evening) I carried on with part time work but it always seemed much more straining than I was used and would have to take pain killers to manage. By April I had had enough as I was so tired all the time. I hat to reduced my hours and was starting to struggle finically. The doctor took some blood tests and sent me straight to hospital as he explained I was anemic and my Hb was only 8. I have been too unwell to work ever since.
I was in hospital overnight, had an iron transfusion as my iron was very low too and then sent home. I went the GP to be followed up 3 weeks later but still felt crazy tired with headaches and neck pain and now lower back flank pain. I was told my b12 was very low and this was why I was not improving and that injections would help. They made NO difference. Now in June I was getting distraught my GP was planning to look into why I became anemic and b12 def in the first place (my boyfriend is a chef, I eat very well, am not a vegetarian and my periods had actually been getting very light) unfortunately the GP quit his job and I was fobed off by the clinics receptionist. I managed to see another doctor as I was still cornered about my back pain was getting worse and my period was being weird. He gave me a strong course of antibiotics for 10 days as thought maybe I had a kidney infection. He also did some hormone tests which showed very low progesterone. At this point my family intervened and made me come back to the UK as I was no longer able to properly look after myself. The antibiotics helped a bit but it didn't last. This was mid July.
Since my return to the UK I went straight to my GP (I am very lucky and she has been amazing I must say). She was quite concerned and wanted to get to the bottom of my seemingly unrelated symptoms and as my breathing had become shallow, and was now more like an old lady than my normal energetic 30 something self. she sent me to have a chest x-Ray and some bloods. My x-Ray was clear but my d-dimmer was slightly raised and my blood gas showed low CO2 so the doctor sent me for a VQ scan to rule out an embolism. This was clear. She then arranged for me to see a gastroendocronologist to see if this was to do with malabsorption. And a urologist as I had had a bout of renal colic that sent me to a &e and often had cloudy or oily urine. I have since had a endoscopy, colonoscopy with biopsies, more bloods and contrast CAT scan. I have even had a ultrasound on my womb and ovaries as my progesterone levels were tested again and came back very low. EVERYTHING else has come back clear... As I was getting bouts of very low blood pressure and postural hypotension and my b12 has dropped dramatically again after just 5 weeks of the injections. So she also organised for me to have a synancten test to rule out Addisons. I meet with an endocrinologist on Monday and he said this was negative. He is organising more blood tests (all though I now believe I have had most of them already) and a brain MRI, if these come back normal (which I believe they will) I am looking at a diagnosis of ME/CFS and the life I have built in Norway which is majorly on hold will be thrown out the window. As you can imagine, my family, norwegian boyfriend and myself are getting quite despirate!
I have been doing lots of research and come across people misdiagnosed with ME when they in fact had Lyme disease. Thinking back to when I first had problems I am wondering if this is a possibility. I want to be able to rule out everything as ME is a diagnosis of exclusion and wont be able to move on until I know I have looked at everything.
Any help or advise will be greatly appreciated.
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