Lyme disease misdiagnosed

[Lydia200]

Hi all.

I strongly believe I've been misdiagnosed by a rheumatologist 5 years ago with chronic widspread pain syndrome but actually have had Lyme disease for 13 years.

I live in Essex UK, does anyone know a nhs Lyme literate doctor in Essex UK???

I'd really appreciate the name and clinic address.

Many many thanks

Lydia

[Hazel_Angelstar Administrator FMA UK Staff]

You may find it useful to join a Lyme disease forum and ask your question there.

I can't help, but maybe there will be another member who can xxx

[Lydia200 in reply to Hazel_Angelstar]

Thank you

[Gooddaysagain]

How did you get the diagnosis?

[Lydia200 in reply to Gooddaysagain]

Gave my Gp a list of my symptoms and he sent me to Rhymatolgy doctor on nhs

[Lydia200]

Thank you for your help. I appreciate it. Xx

[TraceyJ47]

Hi Lydia200, unfortunately there aren't any NHS lyme drs but theres a clinic at Hemel Hempstead called Breakspear medical. Very easy to find on Google. I recently spoke to a lady who had tests with them and she said they quoted her between 1 & 3 thousand pounds 😟 hope this helps x

[Lydia200 in reply to TraceyJ47]

Thank you for your help. I appreciate it.

[TraceyJ47]

I too have got lyme, 21+ yrs & been misdiagnosed as fibro & M.E. My GP did give me amoxicillin then doxycycline - begrudgingly. At first I felt worse as was herxing but once over that I felt so much better for a few months. But not I'm even worse. Main positive was it greatly reduced my allergies, b4 they were appearing at an alarming rate, even ended up allergic to bleach of all things!! That's now stopped xx

[Lydia200 in reply to TraceyJ47]

Yep totally understand the allergys! I only used washing up liquid to clean the house for years. I've not been given any antibiotics yet so I feel the allergies are due to the illness. I've got my life back to a managable level now after spending 1year in bed and 10 years in an armchair. but still cant push too much or come off my medication. I can hold down my part time job and I'm not in too much pain. All thanks to the right meds for me and managing my life. But my glands still hurt, still get fluey, still get tired plus more symptoms if I come off my vitamins and meds.

I can give you a list of what I take if you want.

Gentle hugs

Lydia

[TraceyJ47 in reply to Lydia200]

Yes please! Glad to hear you're on the up 😁

[Lydia200 in reply to Lydia200]

I use

400mg of vitamin B2 for brain fog

400mg of Magnesium citrate (200 am and 200mg again at lunch) for muscle pain.

40mg propranolol am and again at lunch for migraines (Amazing!)

500mg green lipped muscle am and again at lunchtime for any inflammation.

1500mg Omega 3 fish oil for inflammation and brain function.

I also take 25mg ramipril for raised blood pressure

I take Gabapentin for pain but that's a very personal dosage. I went up to 900mg three times a day (2700) but I found it made me depressed. Over a year I slowly went down to just 300mg a day. Which isn't a recognised dose but it works for me.

I also take 1000mg evening primrose but that's for hormones

[Mdaisy in reply to TraceyJ47]

In late stage Lyme Doxycycline is know to make symptoms worse even after the Herx - more research pointing to Tetracycline being better to use. Hard to get the NHS or GPs to listen as you say as usually Lyme tests in UK not advisable as not reliable compared to Germany/USA. However people paying to be tested abroad are facing the UK not accepting any positive results. So, difficult as some even deny the existence of late stage Lyme.

Also some talk on forums that a supplement Monolaurin can also help with symptom control. Thee are thousands struggling against the system to get help for this and it’s awful - it’s neglect as John Caudwell says. He’s offered 1M to UK GOV if they match for research and they never replied.

I understand and hope you find the answers & help you need x

Emma

[Lydia200 in reply to Mdaisy]

Thank you do much xx