Thyroid UK

Lyme Disease, Help!!!!!

Hi All,

I am hoping someone on this website can give me any help and guidance to get a diagnosis and treatment for Lyme disease.

I have been recently Diagnosed with ME/CFS but Im positive Ive had Lyme disease for around 5 years now.

My symptoms are

Arthritis

Bells Palsy

Chronic Fatigue

Severe Migraines (Ive had one now for 5 months!!)

Vertigo

Brain Fog

Swelling of the Joints

Muscle Soreness and Fatigue

Anxiety and Depression

I have been repeatedly to the doctors and been given antidepressants, painkillers and anxiety medication.

When I go back and let the doctor know that it isnt working they simply put it down to depression or anxiety and up my medication.

Ive been going on and off for 5 years now and the sysmptoms are not getting any better.

I am considering looking for private help on this and wondered if anyone had any advice or could point me in the right direction. I have seen that the Western Blot test would be my next step but unsure where to get this done.

Mt doctor has sent me to the Hopsital to the infection clinic in relation to my newly diagnosed ME but I have waited 4 months to see them and once I had was informed it would be another 3 months to see the nurse.

Please, any help would be massively apreciated

Mark

14 Replies
oldestnewest

mgb80 don't waste any more time with the NHS, they're in denial about Lyme. UK Lyme disease charity have a very informative website:

lymediseaseuk.com/

As you probably know any Lyme tests need to be interpreted by an experienced person familiar with the disease and that won't happen with the NHS.

I would also highlight my experience whereby I told my GP that I had Lyme, this has resulted in the GP Partners ordering the GPs not to do anything to help me and to ignore my requests for referral to NHS consultants. Blatant discrimination and medical negligence.

Take your health into your own hands but I'm afraid it will cost.

1 like
Reply

Thats what Im finding at the min. I went last week to say that the migraines were constant and everyday was like waking up with a hangover, you can probably guess what my doctor did!

Upped my antidepressants and sent me on my way. Its like banging my head on a brick wall

Reply

Hello Mgb80, have you got a thyroid condition?

Reply

Hi,

Thanks for the reply. No my Thyroid has come back as Ok on any Blood test my doctor has ordered.

I am waiting for another set of bloods to come back today

Reply

mgb80 Get hold of your results as most GPs know little about thyroid disease, don't accept "OK" as that's just a doctor's opinion. Post them up here for members to comment.

2 likes
Reply

Thank you I will do. Really apreciate the guidance

1 like
Reply

I hope your blood test was at the very earliest and fasting.

Never accept o.k. with regard to thyroid blood tests. It other countries we are diagnosed with a TSH of 3+ but if you are in the UK, it is 10 and some may never reach 10 but in the meantime have lots of 'other' diagnoses for symptoms which, collectively, could be hypo.

When you have a blood test for thyroid hormones it has to be the very earliest possible, fasting (you can drink water). Was yours very early and fasting?

Doctors don't know any clinical symptoms and before the blood tests and levothyroxine were introduced we were diagnosed upon clinical symptoms alone and given natural dessicated thyroid hormones until symptom-free. It was about ten years after the introduction of the TSH and blood tests that some 'new' diseases were named, i.e. CFS, ME and Fibro.

Always get a print-out of your blood test results with the ranges. The ranges inform members how to respond. I shall give you a couple of links and there is more info on the TUK website.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

Reply

Fantastic, thank you

My blood test was done around 9.30 am and I had eated breakfast, I was given a cancelled appointment to see the doctor so had to go straight in and then she decided to check my bloods again.

I have a appointment booked for Friday morning so will request All of my tests from the ast few years

1 like
Reply

Get hold of the results of any blood tests you've had done over the last couple of years.

The kinds of things that show up for many of us is (as an example) :

Ferritin (iron stores) - reference range is 13 - 150 (this can vary from lab to lab) :

Patient A has a result of 13

Patient B has a result of 85

Patient C has a result of 150

All these patients would be told their results were "normal". But patient B is likely to feel best while Patient A is likely to feel the worst.

Patient A can buy prescribed iron supplements without a prescription from a pharmacy or online. (I've simplified things quite a lot - taking iron simply on the basis of a ferritin result is not a great thing to do).

Doctors often tell people that results below or above the reference range are "normal" too. The attitude is "that's close enough".

Common problems are low vitamin B12, low folate, low vitamin D, and low iron, as well as poor thyroid results.

2 likes
Reply

Fantastic, Thank you for your help

1 like
Reply

I will be grabbing my results from the last few years and will check against the above. Really apreciate the guidance.

1 like
Reply

Dear mgb80 - look into the info that Dr.Richard Horowitz has regarding Lyme & chronic Lyme.

Here is one link - best!!🌈

lymedisease.org/horowitz-dc/

2 likes
Reply

Thank you. much apreciated

1 like
Reply

You're welcome😊

Reply

You may also like...