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
Written by
mgb80
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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.
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
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.
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.
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
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.
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