Fiona – Stockport

I was always prone to being bit by midges and mosquitos so who knows how I may have contracted the illness/when. I have a round firm mark on my left shin since I was 10, if that was the cause I clearly wasn’t going to make a fuss about it at that age. I was bit by a mosquito in Canada six months before falling ill with Shingles in Dec 2003.

Summer 2003 I was diagnosed with ME/CFS without a lyme test. I suffered a persistent annual decline despite doing the pacing and rests advice. I thought I’d feel better once I had to give up work. Then in 2006/7 I ended up bed ridden out of bed doing two ten mins tasks a day.

I had a 5 year saga with hypothyroidism and adrenal problems and know this was half of my problem why I got so ill and using wheelchair/mobility scooter and why I went so desperately ill. So much for ‘atypical fibromyalgia’ that I was told it was at the pain clinic.

Low Dose Naltrexone (LDN) helps other symptoms the liothyronine didn’t. I had to start it slowly but I still take it and know it really helps. Also magnesium. A doctor did dark field microscopy but it didn’t show borellia-like-spirochetes it showed a micrococci infection. Sadly the clinic closed and I didn’t get on antibiotics.

Subsequently I got the chance for a 6 weeks antibiotics protocol for protomyxzoa through being established on the LDN. This cured the deep ache in my legs. That made me really wonder the extent to which my remaining fatigue low functioning and low muscle strength neck pain and migraines may be caused by infection.

More recently I had borderline lyme and ehrlichia results from Armin labs and couldn’t initially get treatment. I thought the agreement was I had a viral problem, but thought I had a lyme problem. I was treating three active viruses: coxsackie EBV & Herpes 6. I was pleased for this direction and progress though. Then I tested positive for mycoplasma pneumonia. I did a month of doxycycline and did a re test which showed the antibodies had come down a bit. I also did a lyme panel B test for immunosciences lab. I have some bands and a couple of IgM for lyme outer surface and B.Afzelli. To my surprise I was told he’d treat. That clearly means after all this time I’m fighting lyme disease and it’ll give me direction rather than being in a rut. I’m doing a further couple of months of doxycline for the mycoplasma which I’m also aware is good for lyme, and I’m doing herbs: samento banderol stevia pinella and burbur. There are also olive extract and other supplements. Still doing some viral treatment. In due course I’m keen to build up to the full Cowden protocol to really treat it and it’ll be better value for money. I’m having a rough start but for once I feel optimistic.

I know I’ve suffered various missed diagnosis of hypothyroidism, active viruses, protomyxzoa, lyme disease, mycoplasma. One by one I get to the root of my problems and prove the NHS wrong when I’m in a rut. When you have a diagnosis of ME/CFS/Fibromyalgia you are actively discouraged from seeking out the bacterial causes. No amount of pacing and rests will cure untreated bacterial infections or endocrine or immune problems. While getting your rest has its place and you can’t push through severe illness, once you feel better, you are less preoccupied about getting rest anyway. People comment how positive and proactive I am, but I feel like I have to be and couldn’t be anything other than that type of person.