Advice on Treatment Plans

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Owley
Posts: 1
Joined: Sun 3 Apr 2016 23:07

Advice on Treatment Plans

Post by Owley » Sun 3 Apr 2016 23:17

Hi all,

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
    Headaches
    Aching muscles and joints
    Sore and stiff neck
    Panic attacks
    Bouts of severe dread
    Confusion and difficulty reading
    Nausea and stomach issues
I seemed to have developed allergies I never had before, and I am struggling to eat a lot of foods including gluten.

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.

AnnaMerc6068
Posts: 2
Joined: Sun 28 May 2017 15:16

Re: Advice on Treatment Plans

Post by AnnaMerc6068 » Tue 7 Nov 2017 23:55

Hi,

As with so many others I can completely identify with your experience. I contracted Lyme in 2009 and was very sick with many many symptoms and just like with you, I was prescribed antidepressants, diagnosed with IBS and was actually losing my words at an alarming rate. I, eventually, after months of research I finally diagnosed myself with Lyme disease last year. Sent bloods to Admin labs and they were positive for three strains of Borrelia and a couple of co infections.
There is so much to say but to try to keep it shortish... I am on the 12th month of three antibiotics a day one of which is Rifampicin (tough). For three of the months one of them was cefuroxime (as it crossed the blood brain barrier). He switched them around to target the skin, lungs etc. I see the only specialist in Ireland and England that treats Lyme this way.
All the top Lyme specialists agree that a multiple method aproach is necessary. With antibiotics, 67% of people can get up to 80% well. It can take a year or two after antibiotic treatment to build oneself up. The immune system and muscles etc.
Dr Burrascano has a free book online and IT is extremely helpful. Though I have improved, I have a long way to go but I was very bad as I had only three years earlier come back from another illness.
Diet is very important and the usual common sense approach but I do believe that antibiotics are needed to kill the spirochete as much as possible.
There are those who have treated themselves naturally but as my specialist says... it only knocks it out and is like putting it in prison for a while but it needs an uzi to fight it properly.
Good luck and I hope you find even a grain of helpful info here!!!???
AM

AnnaMerc6068
Posts: 2
Joined: Sun 28 May 2017 15:16

Re: Advice on Treatment Plans

Post by AnnaMerc6068 » Wed 8 Nov 2017 19:17

Hi again,
I just wanted to mention that most infectious diseases specialists in England and Ireland don't agree with long term antibiotic and question the ethics of it, saying that there's no evidence that it works. They also didn't agree with the blood result but they don't seem to take into account the fact that the immune system of people who have been untreated for a long time is not responding efficiently so the results can be misleading. It really is up to the individual but I do believe antibiotics are neccessary to help fight Lyme disease and co infections.
Warm regards.
AM

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