're: really need help in northern Ireland

Hi Guys,

Been reading these posts for months and finally decided to join ..so Hello! Im going to try and do this as short as I can. Im 29 healthy active female. In June 17 struck down suddenly it felt like I was taking a stroke down one side of face, dizziness and muscles shook all over, A&E put it down to viral. Weeks later bed ridden docs said it was shingles no rash so then gp said it was trigerminal neuralgia gave me all sorts or anti epileptic drugs which just made me worse. I paid for a private neurologist as I knew I didn't have TN. I have a constant burning stabbing , numbing ice like sensation which not even lyrica will take away! The neurologist mentioned Lyme I got tested usual NHS negative test however symptoms now have spread to right side of face my GP said "he doesn't know what it is" I have a important job I need to go back to my sick pay runs out next month. This pain gets worse when I eat anything with sugar, gluten , wheat or dairy. I don't have joint pain it's all from my neck upwards.
My gp decoded to give my doxy 100mg so i took these september 17 i wasnt aware tbis was a low dose until i read these posts (so thanks guys) I spoke to doctor in Seattle who told me to take 400mg of doxy plus grapefruit seed extract. He asked me what I was like with alcohol I told him 3 time I've drank and 3 times I've ended up in bed for a wee with night sweats , pain is tenfold over (I drank before I knew it was Lyme) he said this was better than a blood test for him. I recently went to London clinic of Nutrition to get bloods done however they told me I need to be off antibiotics 4 weeks( I had to wait 6 weeks for appointment no1 told me this over the phone ) . I was disappointed bit I'm am afraid to come off the doxy as this will make it worse again? The LCON thought I have babesia what I'm wanting to know is does any of you out there have these symptoms all over your face ? If babesia how do you treat with 400mg of doxy also? Any help at all would be great I just feel like I'm never going to get better without any help from gps in the UK. I'm worried by not getting bloods done also but I read most co infections aren't done on blood tests as they aren't reliable and can be diagnosed on symptoms alone. Any help at all would be appreciated

Hello and welcome,

Sorry you are suffering.

The tests are crap at detecting these infections. You cannot rely on them. "negative" interpretation does not rule out infection.

I am from the states and wish I could offer better advice, but I am unfamiliar with the UK health system.

I do think it would be prudent to make an appt with an LLMD. Lyme Literate Medical Doctor.

so shingles was suspected...did they put you on antivirals? if so, how did you respond to that? if not, why not?


also are you improving on the doxy?

Thanks I emailed you