I have been reading these forums for the past couple of weeks and have found them really helpful. I thought I would reach out in the hope of getting some perspectives on my situation.
I believe I contracted Lyme around 14 months ago after a visit to Bushy Park in London (an area I understand has a recorded presence of the bacteria). A couple days after the visit I had a severe pain in my foot, I also noticed a rash. Then over the past 14 months I have gone from good health to spending the majority of the day confined to my bed. I am suffering from,
- Extreme fatigue
Aching muscles and joints
Sore and stiff neck
Bouts of severe dread
Confusion and difficulty reading
Nausea and stomach issues
I am based in the UK and I have seen a number of doctors, both on the NHS and privately. I have been put on anti-depressants that made me a lot worse, and after three months I had to come off them. They have also tried giving me treatment to help with my physical symptoms, for example to settle my stomach, but this hasn't really made much difference either.
Over the course of this past year my condition has continued to deteriorate. While I was coping with the issues at first, more have appeared and I am now struggling to function.
More recently I became aware of Lyme disease and its alignment with my symptoms. I have taken the NHS blot test twice and both times it has come back negative. However, I understand these results may have been influenced by a short run of antibiotics I had for a tooth infection during the summer. I also came to learn that the blot tests do have a high instance of false negatives.
After some more research I then took a test at ArminLabs. The key thing from this was the EliSpot that came back as,
Borrelia burgdorferi Elispot
Borrelia burgdorferi Fully Antigen, + 10 against a usual reference of <2
Borrelia b. OSP-Mix (OSPA/OSPC/DbpA), + 11 against a normal reference of < 2
Borrelia burgdorferi LFA-1, 1 against normal reference of < 2
With the comment "The results of the EliSpot-Tests are an indication for an actual cellular activity against Borrelia burgdorferi.". This seems pretty conclusive to me, yet I have struggled to find anyone in the UK that will offer me a treatment plan.
So as it stands, I have an outstanding NHS referral to the clinic for infectious diseases but I have been told to expect around a three month wait, with no guarantee they will actually treat me. There is no way I can wait that long feeling like this. With that in mind I have the following lined up,
1. I am planning on visiting the NTA (http://www.ntaclinics.co.uk) next week to see what they can offer.
2. I have been looking at ILADS guidelines and believe I may have an option to get some antibiotics in the UK next week.
3. Failing that in two weeks time I am planning on going to the BCA (http://www.bca-clinic.de/).
I would be interested to understand anyone else that might be in a similar position, or who has any experience with treatment? I was also wondering if there was a consensus on the best clinics in Europe, given that a trip overseas is quite a commitment and I want to be in the best hands?
Thanks in advance for any thoughts you may have.