Category Archives: Patient Stories

Diet, ABX, Testing

Hi everyone, just have a few questions for some advice. I got bitten two years ago in the summer and had the bulls eye rash for about 3 months. My gp sore it and said I had lymes so gave me a week of antibiotics. Didn’t think any more of it. Then 3 or so months later the weakness started and slowly a hell of a lot of the symptoms came. So went back and 6 months after bite had a lymes test but came back negative. Iv put on 4 stone but not eating anything . I suddenly got these awful stretch marks that’s were bright red/ purple I thought it was weight gain so didn’t tell my gp. When I did show him he said they’re defiantly nothing to do with weight gain and he sent me to a spec for cushings disease. Anyway had hundreds of tests all came back negative (a few did like vit d and t3) so then sent to kings college hosp. I had loads of blood taken including a lymes all of the other tests came back negative but still waiting on lymes. I also have had problems with periods. I have had a Peroid every other week like clockwork since October which obviously doesn’t help with feeling so awful. Anyone else had this. Also terrible insomnia. I get tired at 9pm but if I get to sleep I auto wake up in 3 hours for some reason and then go 48s without sleep. I am wide awake from about 1am till 7am??
My gp has completely changed everything he had said. Things like there’s no such thing as lymes and that the marks are because of the weight gain.
I can’t speak to him anymore because he just talks about fibromyalgia which I know I don’t have!! But he keeps signing me off work?? Just wondering whether anyone else has had these marks they also get really bright then get dim seems like they are reacting to when I have really bad days they get worse. Struggling to feel any hope atm. Has anyone been clinically diagnosed. Having such a bad few days can hardly use my right hand  oh and finally does anyone get really bad nausea and sickness and how did you cope with it? Sorry if I’ve rambled got an awful headache and nausea??
Tanja Kaspar ps. there is a lot of denial and politics going on in the health system so educate yourself as much as you can. pps. glutenfree diet has helped me a lot, also reduced sugar, no alcohol
11 hours ago · Like · 1
    Neelu Bird try to avoid steroids if poss. if u can’t get abx then maybe worth experimenting with herbals which u can buy online. if ur ok with garlic then allicinmax is strong bt helpful, I’d be lost without it. other ppl use samento, banderol & other stuff too.
    Flora Poste Yes, gluten-free is a must! And you can find out about a good herbal protocol here if you want to pursue private blood testing (that won’t be accepted by the NHS) to confirm that it is lyme the two labs most often used are and But since you had the bull’s eye rash that’s considered definitive for Lyme and you might as well save your money for treatment. Both Lyme and bartonella are serious bacterial infections and antibiotics are the key.
    Flora Poste Many of us have lost all alcohol tolerance. It’s another typical Lyme symptom. It makes me really sick now too.
    Hello, just seconding the good advice you’ve already been given. With a bulls eye you know its Lyme and the stretch marks are indicative of Bartonella. You need to get a good lyme literate doctor who can test you for these and other co-infections and get you started on approprate treatment. I was in the same boat as you 6 months ago, I had negative tests in the UK, but had a history of a bulls eye rash so this gave me enough evidence to decide the NHS tests must be wrong and to go to germany for private testing at Infectolab. The tests there confirmed Lyme and a number of confections. I’m now 4 months into treatment through the BCA in Augsburg, and making good progress. Its all a bit of a mess with the politics around lyme, with no adequate care through the NHS, most of us are or have spent out life savings on treatment and have also done a lot of fundraising to cover it too. It can feel daunting absorbing all the info at the start and working out the logistics, but you’ll get there. This groups a brilliant resource which really helped me to get where I am today. There’s lots of info in the files section, and you now are part of a huge network of people with an amazing connective knowledge about tick born diseases and treatment. Good luck. I hope you get answers and are on track to the right treatment soon. xx