Hi all,
Has anyone been tested for Lyme disease and found it to be a root cause of their thyroid issues? Can this be tested on the NHS?
Thank you
Lyme disease as a root cause for thyroid problems? - Thyroid UK
Lyme disease as a root cause for thyroid problems?
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Yes, there is some research connecting the two. thyroidpharmacist.com/artic...
Izabella Wentz as well as others are making this connection - apparently not all cases of Hashimotos have this as a root cause, but some do. While Dr. Wentz is constantly promoting product, she nevertheless shares good research.
This was mentioned as topic recently on an online seminar about Hashimotos, also links from Root canal treatment and Epstien Barr virus and Gladular fever.
I had the later in my teens and have never been 100% health since, now I have Graves/Hashis totally believe this was what started it all off.
When I meantioned years ago to Endicrine, I was told it was told it had no link but since ive experienced not great service from the Endicrine Dr I now dont think they would know anyway. When you look into how those viruses attack your body and the science behind it definalty relates.
• in reply toBitterSweetS
I believe that it does I also had Glandular Fever in my teens too. When I was 68 I had my thyroid removed. They also say travel sickness and sinus problems.
That is interesting about the root canal- I started getting my headaches (which tipped me off to my Hashis) 2 days after my final root canal treatment.
Have you been bitten by a tick? If so then yes, the NHS will do the test. If the answer is no, the Endocrinologist might have a hard time justifying the test in the current austerity climate.
I don't think so I have never been bitten by a tick. People always laughed at me with long sleeved T shirts and long jean walking in the summer but I don't have Lyme.
Testing for three different types is important the only two are in the US one in NYC.
Lyme's Disease tests are very problematical, you can have many negative tests but eventually it shows up so just testing is not the only way of checking. If, of course, you know you have been bitten then there is a higher chance. Lyme's Disease attacks many parts of the body and hides behind other problems. Can be treated with antibiotics but you often have to treat other symptoms first to get at it. Very complicated disease that can totally disable people if not treated. To my unprofessional mind, I would say if your are very ill with an undiagnosed condition, it is a high possibility and increasing regularity spreading across countryside areas particularly with uncontrolled ferns like Scotland. Conditions like PANS/PANDAS are also very interesting.
I have been chronically ill for 10 years and severely debilitated for 2 years now. I believe it is Lyme causing my symptoms
You may also want to check for mast cell activation syndrome. That commonly goes with Hashimotos and other autoimmune conditions.
Lyme test on the NHS are generally unreliable and you would probably need to have them done in Germany or Poland where there are some specialist laboratories although even these not always show the positive result. There is a private clinic in London where they specialize in diagnosing and treating Lyme or you could try an experienced kinesiologist who can test for Lyme or the biofilm traces in your body and put you on a treatment with herbs - worked for me. Antibiotics may not generally work well for Lyme if it is established beyond something like 6 weeks from infection and infection itself is not only through ticks but some other insects too.
Many years ago I noticed a strange thing on the front of my leg: a circular rash. At the time, I had never heard of Lyme disease and it was several years later when I read about the "bulls-eye" rash associated with Lyme disease. In the years since I have been treated with antibiotics on several occasions (including a huge case of pneumonia that required a second 10-day round). Can I assume that if I had Lyme disease, it would have been cured, since by the antibiotic treatments?
Unfortunately it is quite unlikely these antibiotics would have made any difference. Lyme disease bacteria can be treated by antibiotics but it generally needs to be done very soon after the infection (within a few weeks) and not all antibiotics are effective. Borrelias burrow into various tissues in the body and produce a biofilm which is impenetrable for antibiotics so after a certain time they will just lay dormant and multiply and spread despite any other medication you might be taking for something else. That's why it is so difficult to treat this condition. There are ways of dealing with the biofilm and bacteria but you average doctor is almost certainly unaware of them. Read the posts below and you will get much better information from the links provided.
This article was in the BBC news yesterday....
Lyme disease can be diagnosed by 'bull's eye' rash alone
Lyme disease can be diagnosed by the rash alone, new advice for the NHS says.
People with the "bull's eye" circular rash do not need a blood test and should be treated immediately to avoid complications, the National Institute for Health and Care Excellence says.
Waiting for lab results is unnecessary and can cause delays in patients being prescribed the antibiotics they need.
Lyme disease is spread by tick bites and can be debilitating.
A blood tests can check for it but may not give a positive result until eight weeks after the patient is bitten.
Prof Gillian Leng, deputy chief executive and director of health and social care at the National Institute for Health and Care Excellence (NICE), said for most people with Lyme disease, a course of antibiotics would be an effective treatment, "so it is important we diagnose and treat people as soon as possible".
"A person with Lyme disease may present with a wide range of symptoms, so we have clear advice for professionals about the use of lab tests for diagnosis and the most appropriate antibiotic treatments," she said.
"If a characteristic bull's eye rash is present, healthcare professionals should feel confident in diagnosing Lyme disease."
Lyme disease can be difficult to diagnose. It has similar symptoms to other conditions and there is not always an obvious rash. The rash can also appear in a number of different ways, as these images from the NICE guidance show.
Symptoms can also include:
a high temperature or feeling hot and shivery
headaches
muscle and joint pain
tiredness
loss of energy
But if there is a delay in treatment, more severe symptoms can develop months or years later, including:
pain and swelling in joints
nerve problems - such as pain or numbness
heart problems
loss of memory or concentration
Lyme Disease
Ticks that may cause Lyme disease are found all over the UK
High-risk areas include grassy and wooded areas in southern England and the Scottish Highlands
To reduce the risk of being bitten, cover your skin, tuck your trousers into your socks, use insect repellent and stick to paths
If you are bitten, remove the tick with fine-tipped tweezers or a tick-removal tool found in chemists
Clean the bite with antiseptic or soap and water
The risk of getting ill is low as only a small number of ticks are infected with the bacteria that cause Lyme disease
You don't need to do anything else unless you become unwell
You should go to your GP if you've been bitten by a tick or visited an area in the past month where infected ticks are found and you get flu-like symptoms or a circular red rash
These symptoms can include feeling hot and shivery, headaches, aching muscles or feeling sick
Source: NHS Choices
A growing number of high profile people have spoken out about their experiences of the problems of living with Lyme disease due to delayed diagnosis.
American model Bella Hadid has spoken of the challenges of continuing to work with the disease because she's often exhausted and needs to take regular medication. Her mother, who starred in The Real Housewives of Beverly Hills, and Bella's brother also have the disease.
Singer Avril Lavigne said it had taken months for her to be diagnosed with the disease, which had left her bedridden for two years. She got the first symptoms on tour, when she was achy, fatigued and couldn't get out of bed. She said she had felt so bad at one point she had "accepted that I was dying".
Former England rugby player Matt Dawson got the disease after being bitten by a tick in a London park in 2015. It caused a bacterial infection to spread through his body and eventually left him needing heart surgery.
Matt Dawson: I had to have heart surgery after a tick bite
Mum 'paralysed' after tick bite in garden
John Caudwell offers over £1m for Lyme Disease research
Phones 4U founder John Caudwell funds a charity Caudwell LymeCo that funds research he hopes "will lead to a truly reliable test and cure via the NHS for every Lyme disease patient". He and 14 other members of his family have the disease.
Veronica Hughes, chief executive of Caudwell LymeCo, said she hoped the new NICE draft guidance would increase the number of doctors who felt confident diagnosing a Lyme disease rash on sight.
"Caudwell LymeCo Charity hears regularly from people whose doctors have diagnosed an erythema migrans but decide to check with a blood test, not realising that the rash is the more reliable of the two," she said.
"Waiting for blood test results always delays treatment. When a patient has the rash, this delay is unnecessary and reduces the likelihood of total cure."
Hello, Yes Lyme Disease and its associated co-infections as well as other related infections can cause many, many symptoms including being the root cause of hormone problems which of course includes thyroid illnesses.
Unfortunately it is unlikely that this will be picked up in the UK, and NHS Lyme tests are unreliable, unless a tick bite is caught early and treated appropriately. This is often not the case as the bite often does not leave a rash.
It wasn't until I took my daughter (now 38) to the USA where she had the correct tests and saw a Lyme literate doctor there that her diagnosis was picked up. She had been getting steadily more ill since the age of 12 and by the time she saw the specialist she was EXTREMELY ill. She is now being treated and her condition has improved markedly, but the longer Lyme Disease is left untreated the deeper hold it has on the body as it changes form and can hide in many tissues.
We wasted many, many years chasing the thyroid route as we were convinced that this was her only problem, but it turns out that her thyroid issues were merely symptoms a a MUCH bigger problem. Sadly doctors, PHE, thyroid advisers and other specialists whose specialties (heart, rheumatoid, immunology, neurology - the list is endless) refuse to take the Lyme threat seriously so it is left to indiviuals to find their own way.
The best way to start is by reading this book which is BRILLIANT - amazon.co.uk/Toxic-Neil-Nat... Do not get the Kindle version as there are illustrations and diagrams which you really need to see and I don't find Kindle is user friendly in such situations.
Also check out this website. It was co-founded by someone who had herself been diagnosed with a thyroid problem. Since going to the specialist in the USA we have found countless others with thyroid problems and Lyme Disease. lymediseaseuk.com/
This is the best and most informed Lyme Disease website in the UK, and is run by truly lovely people who've all had experience with Lyme Disease. Despite these problems they are very active in the field.
Don't let the NHS fob you off if you are convinced you have a Lyme problem. There are NO specialists in the UK, and most doctors are ill informed.
Jane x
Jane - hi. Im in the same position and thinking about going to the US to take some tests.
Where did you take your daughter and how many zeros are we looking at in terms of cost?
Sorry but I wouldnt ask unless I was desperate.
Please don't apologise. Desperate is a word I understand only too well after years of getting the cold shoulder here for my daughter. I'll PM you with some details. Jane x
You sound like a great mum. I can't tell you how important that support is. Thanks for helping me out 
Bluepettals. I had a lot of nasty symptoms last year and my kinesiologist found out it was due to the activation of some of the Lyme causing bacteria though I don't think it was a completely new infection as the biofilm traces were testing positive. Anyway I was put on a herbal protocol which proved to be very effective and after 6 months I am no longer testing for Lyme. It might still be dormant somewhere or maybe eradicated for good which is possible as me friend's case testifies though she was battling it for years. If you were interested in the kinesiology route I am happy to supply my kinesiologist's details by PM.
Yes I put ALL my symptoms down to being thyroid related ( had thyroidectomy 2003) but have recently found out I have Lyme .
So many symptoms overlap so it’s confusing.
I originally asked for a test (nhs) about 8 years ago . It was negative ( I now know the test is not sensitive enough to pick up a long standing infection)
Eventually thought I was just ruling it out and tested in Germany where tests are more accurate)
It was positive for Lyme and several co infections .
What I now believe is there’s probably hundreds of people suffering undiagnosed with Lyme . This could be being confused with thyroid illness , fibromyalgia, ME , etc etc ...
• in reply toPanda_26
thank you so much for your reply. Cn I ask where you got tested and have you had any luck with treatment? Thank you again
Panda_26• in reply to
Hi , yes , I eventually tested through Armin labs in Germany. My gp has referred me to infectious disease dept of local hospital but not sure what use they’ll be so I’ve done my own research . It seems that antibiotic treatment rarely helps chronic Lyme long term so I’m taking a more natural herbal route through London clinic of nutrition. ( started protocol a few weeks ago ) They seem experienced in treating patients with long term Lyme so we’ll see ..
How is it going so far, Amanda?
Hiya, well slow, I guess is the easiest way to describe it.
I have a few days here & there of feeling a tiny bit better and then randomly it all goes back to beginning with horrible symptoms , - mainly chronic muscle pain, back,neck, fatigue, tinnitus etc etc .
( all the things that can crossover into thyroid symptoms) so its terribly difficult ...
I gather it can take years to get on top of late stage Lyme like I have.
How are you ? Did you opt for Lyme testing in the end ?
Hi Amanda,
I will take some tests when I can. Easy to lose hope but lets not do that. There are lots of examples of people who make huge recoveries after they start treatment for Lyme.
I would nonetheless be tempted to go down the antibiotics route but I am interested in the course you're taking. If I start treatment I'll be sure to let you know how things go.
Well I chose the herbal route rather than antibiotic . Mainly because the antibiotics can really take their toll on the body and the people who seem to to the best are the ones that treat it holistically and strengthen the immune system to do what it’s supposed to . I’ve heard of people initially making gains in antibiotic treatment but seem to relapse when they stop . The herbal route I’m taking is through a London clinic and as I said is slow but I’d been quite ill for so many years I don’t think there’s a quick fix ... ( especially for late stage Lyme , & obviously v different if you know you’ve been bitten & treat early ) In that scenario I would have definitely opted for antibiotics. Read as much as you can and decide which treatments right for you , were all different ...
Good luck !
A x
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