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Hi! I'm new to this forum as I have been googling trying to find somewhere I can talk to people who will understand how I feel. This is going to be a long and rambly post so I do apologise in advance...
Two years ago in 2015 I was down in Kent for my brothers wedding in a very rural area, they has lots of high grass and every person at the wedding got bitten, however I took a funny turn with mine. I never noticed a tic in me but I would have been bitten whilst getting photos taken so we believe I may have knocked it whilst picking up my nieces and nephews and such.
I returned home to Liverpool and as the weeks went by the rash got worse and I got sicker, vomiting, no energy, feeling just generally run down. I seen about 5 different doctors who all told me it looked and sounded very similar to Lymes Disease and all turned me away with excuses such as come back if it hasn't gone in a week or if your symptoms get worse. I was only 18 and didn't know anything about the disease nor did my mum who was with me. About 4 weeks after an appointment I had a phone call from my Doctors who told me to come in ASAP and informed me at my appointment that a previous doctor had been in touch with him as she had been concerned about the rash and suspected Lymes, they rang Infectious Diseases and explained to them all my symptoms and they told my doctor to give me a 2 week course of doxycycline as I'm allergic to amoxicillin. He told me the tests aren't accurate and they aren't even going to attempt it as it wastes time and will not be an accurate result.
I took the tablets however they made me really sick and I just kept vomiting them up. I really didn't think anything of it as I felt much better and the rash had gone (how I wish I knew back then what I know now). I decided to stop taking the tablets and told my doctor I was feeling much better.
2 years on and here I am, my whole body is in agony constantly, some nights I can barely bring myself to walk to the bathroom. I can't carry any bags for longer than 5 minutes and simple tasks like opening a drink or bending down to pick something up exhausts me. I can't sleep at night, I can't think straight I'm exhausted no matter how much sleep and rest I have. I wake up and vomit at least 3 times a week. I can't catch my breath, I'm so sensitive to light and sound and my main issue is panic attacks. I have never, ever suffered with anxiety or panicking or depression and now I have around 2 panic attacks a day. Just this morning I was in work and suddenly launched into one with no explanation. The symptoms are getting worse by the week, if not by the day.
I went back the doctors 4 weeks ago thinking it would be as simple as the first time, unfortunately not. The first doctor I seen was brilliant and really understanding who told me he's going to send off for the tests and other blood tests and if nothing comes back (even if the lymes doesn't come back positive) I'll be referred to Rhaumatology who have Lymes specialists. I got the blood tests done and went for my results last week just to find the nurse hadn't even sent off for Lymes and just done routine bloods. This doctor I saw was horrid, I could see her looking me up and down as if to say they doesn't look like anything is wrong with me. She told me Lymes is 'political' and basically because nothing has been found in my blood she won't refer me and I'll fall into a class of unexplained medical causes. This shook me up big time as it wasn't what I expected after being promised the world by my previous doctor. When I asked her could I do the Lymes test she told me they is no point and she doesn't see why the doctor would suggest it in the first place. I came out feeling defeated and very upset, to the point my boyfriend was trying to go into the room he was that furious with the results as obviously he is seeing the impact this is having on me.
I asked the Receptionist if I could be booked in with the doctor who originally told me I will get referred however he was only filling in for the day. I have an appointment next week with a doctor everyone recommends and my mum and boyfriend have both had very positive experiences with.
I just can't bare feeling this way anymore, I have always been active and was a ballerina up until all this started, now I can't even go shopping alone.
I have a wonderful support system and I know I'm at the start of a very long road, I just feel alone as no one around me really understands how it feels. I have gone down a herbal route and my mum has bought book after book on how to herbally treat Lymes.
Does anyone have any tips at all to help me make this doctor next week see light and get me some help? I can't bare being 20 years old feeling in a 70 year olds body.
Thank you if anyone made it this far, it felt good just to get it off my chest...
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