Typical Lyme symptoms

[Sonni76]

I received a nip at the back of my neck at the beginning of June this year (while walking through woodland). Didn’t think to much of at the time but felt unwell the next day (feverish etc). Around a week or 2 later I felt itchy on my back, when I lifted my tee shirt, I noticed 2 red circle marks (typical bullseye images). Having shown my mum and sister (we all agreed it looked like midget bites). Having suffered these in the past I thought no more of it and left it. I visited the Doctors yesterday (having googled) my multiple symptoms since June and she has sent me for blood tests with the practice nurse. Since so much time has passed she said it was pointless giving me antibiotics and until everything else is ruled out, she can’t refer me for Lyme test (as the NHS) don’t allow it until everything else has been ruled out. I’m only 41 and extremely concerned due to the rapid heart rate symptoms & severe hand & feed cramps? Has anyone else experienced these symptoms and explain what the medical process involves. Many thanks

[Mdaisy Administrator]

Welcome to the community LLWD !

So, sorry yo hear you are experiencing this reluctance from the medical profession who seem to be unaware or choose to ignore the symptoms of chronic Lyme disease. As you've been told they will likely do a range of tests and could even diagnose you with another condition with similar symptoms that has no diagnostic test. I feel I was personally misdiagnosed with Fibromyalgia & ME although I am in no way saying these conditions aren't a valid diagnosis and a condition in their own right. I believe I was bitten many years ago and also remember the bullseye rash although my 1st tier was negative it fits my picture although Drs oppose this view. There are so many chronic illnesses with similar symptoms and nobody seems to be addressing the inadequate NHS testing no only for Lyme but other testing too.

From what you've described you do appear to have had the classic Erythema Migrans (EM commonly known as Bullseye Rash) and have missed the opportunity for a GP to see these obvious signs due to no fault of your own. I am assuming you mentioned the distinct rash to your GP when you later presented with your current symptoms. Apparently Lyme disease is being commonly missed byGPs unfortunately and more education, understanding and knowledge is needed as if even treated with Antibiotics people are later reporting chronic Lyme symptoms.

If you have no financial concerns I suppose my first suggestion would to get the Lyme tests done privately either here or for greater sensitivity in Europe. I believe it costs around £300 to for abroad. I believe the charity Lyme Disease UK (LLWD has no connection to them) used to provide funding but due to so many requests this was stopped.

Here's a link with further information on testing from their website;

lymediseaseuk.com/lyme-dise...

The only caveat with this is that as the link above says, is that the NHS does not recognise the results if positive unless done in their verified laboratories. This leaves us in a precarious situation whereby you could have a diagnosis but cannot get NHS treatment. Many people if financially able have sought private treatment, however many cannot afford this so have been campaigning to UK government for change.

I am in this situation so have read up as much as I can on natural supplements (antiviral, anti-parasitic and antibiotics) that might help the symptoms and look at other therapies that can be used as well. Trying my best to make improvements as best I can.

As a newbie I notice your post isn't locked to this community only and generally members will reply to locked posts more often. Here's more information about locking posts and how to do it in the link below;

healthunlocked.com/living-w...

I hope this helps and I'm sure other members will reply with other helpful information too

All the best

Emma

[Ironinglady]

Hi Sonni76.

I am so sorry to hear of your situation.

A bullseye is a clear indication of Lyme.

You have Lyme disease and therefore should receive 6 weeks of antibiotics.

No blood test is necessary. The bullseye confirms this.

Unfortunately this is the maximum in the UK for acute Lyme. You are not in the early stages so six weeks is not enough. The life cycle is up to 30 days long , so already we are looking at approx 5 months untreated. I was untreated for 3 years and my antibiotics therapy took 6 years for me to recover. You must urgently ask your doctor for the treatment. Do not start the antibiotics though if you plan to have a Lyme blood test, this can affect the results. You must not have antibiotics in your system for 2 weeks prior to the blood testing.

Your doctor must send the test to PortonDown, also you would need a western blot, not an Elisa, an Elisa is said to be a useless screening tool. I am afraid if your doctor is unsupportive he will claim you have a post Lyme infection. You must consider consulting a Lyme literate doctor.

You may consider ANIOM aonm.org/armin-labs/

It is important to check also for co-infections as this can complicate the diagnosis.

I do not wish to sound all doom and gloom, with the correct treatment plan you can recover. You need to act promptly because time is of the essence.

Wishing you wellness. Please do not accept what the nurse is telling you. The sooner you start treatment the better the outcome.

Personally I would get the ball rolling with a private test and your GP Porton Down test. Then begin the standard 6 week course of antibiotics - despite late, this may help to resolve some symptoms, while you are waiting to see a specialist doctor.

I wish you good luck and a speedy recovery 💚🍀