The impact of Lyme Disease and other chronic infections is ignored by health specialists in the UK, both NHS and private. I urge anyone still suffering from what they believe to be the symptoms of thyroid dysfunction, despite having received endocrine replacement, to read this article which is merely the tip of the iceberg of serious chronic infections. lymediseaseuk.com/2016/11/2...
Contact me by PM if you need more information and links about other chronic infections that can cause thyroid and other multiple dysfunctions.
Jane x
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janeb15
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A worthwhile reminder for everyone, Jane. I am currently trying to treat chronic viral infection - initially successful, then a return to my previous state. I haven't yet tested for Lyme.
janeb15 thank you for bringing this to the attention of members and your kind offer of further info and links.
Despite being under an NHS Endocrinologist my health was getting worse and I demanded answers. He told me that he wasn't concerned by my symptoms. Unbelievable.
Members should not assume that all "NHS healthcare professionals" are indeed that, I've encountered far too many who are disinterested and don't care anyway. They have no accountability and complaints are dismissed by Practice Managers, General Medical Council and the Parliamentary and Health Service Ombudsman.
Also be aware that there are private doctors who're more than happy to relieve you of your wallet whilst making empty promises.
I was left undiagnosed and unmedicated for hypothyroidism for 18 years, tested and diagnosed with Lyme disease earlier this year.
stoneym I had a private test done in the USA and am under the care of a private American doctor. Only recently informed my (Scottish) GP and she didn't laugh me out of the surgery. Suspect I've had this for a good few years but was always fobbed off by useless NHS doctors.
What is a Bio-select test? Have you spoken with your GP about the results? Are you being treated?
It is a test I've had done, when desperate & don't know which way to turn - called ASYRA. It always highlights adrenals, thyroid, lyme disease, hormones, and lots more; then treats with homeopathy type drops. When the drops run out, I'm usually a bit better so don't go back, till the next crisis.
I don't get on well with GP's and goodness knows I've tried enough of them. I'm not wasting any more time or energy on them, but would use for tests. GP sniggered when I said I had cfs, and when I added that this was my only outing for the week, he said sarcastically 'How sad!'
I don't receive any treatment from NHS as they don't think there is anything wrong with me, but I'm much improved after asking a private doc. for NDT and dosing myself. (with HU help!)
When I told my last GP I'd had a private test, he was furious, said I was criticising the NHS and told me it would be better if I found another GP.
Yes, I'd agree USA docs are far more advanced than in UK
I'd be happy to send you information and links about what has really helped my daughter if you want them. Just send me a PM. Sometimes thyroid problems are much deeper than they appear on the surface - this was certainly true in her case. I believe that it is important for those responsible for groups like this one (and also any related to fibromyalgia, gut issues, depression, other neurological problems and so many more areas of ill health) to be aware of possible underlying causes of these health issues, and make their members aware of them. This is simply not happening at the moment. In my daughter's case we believed for many years that her ill health was merely a thyroid issue. In fact, when we researched deeper we discovered that it was much, much more. Jane x
Thank you Jane for your reply. I can't see any doctor in the UK getting to the bottom of my health problems, and I can't see me going to the USA. From what I've read, the UK tests for Lyme don't appear to be conclusive; still I am much better than I have been for many years, and hope to continue to improve.
Hi Jane I've just joined this site and seen that you have explored the whole Lyme disease issue. I think I may be affected due to my symptoms. I'd really like to know how/where to do a test that is more thorough than NHS. I'm a single mum to young child and would really like to get beyond the fatigue (it's more than child induced exhaustion!). I'd be really grateful if you could send me info. Many thanks in advance
Hello, I'm so sorry to hear your story. It's one that is becoming more and more frequent in the UK as more people wake up to Lyme Disease. I wish I could give you a quick and simple answer, but there isn't one. However, I do have lots of information and some if it may help you. I certainly hope so as I know how debilitating Lyme Disease can be. I'll send you a PM. Jane x
stoneym a private test would be worthwhile. Fully understand how you feel re GPs and, like you, just use them for getting tests done. That was a horrible comment to make to you, their fragile egos can't bear the thought of patients learning about their health and putting them to shame.
Great that your health has improved with NDT and long may that continue.
NICE (National Institute for Health and Care Excellence) have produced a document in respect of the Lyme disease guidelines that will eventually be published. Stakeholders were invited to make comments on this document.
Comments made by the Royal College of General Practitioners (RCGP) included the following:
"There is clearly a link being made between chronic fatigue syndrome and Lyme disease by the support groups for suffers of chronic fatigue. Some GPs have seen a few patients who are desperate to pursue a diagnosis of Lyme disease to explain their fatigue symptoms. The RCGP feels that it would be invaluable if this guidance helped to differentiate on clinical grounds those fatigue suffers who need further investigation and those we can reassure without recourse to blood tests, investigations and/or referrals.
That really sums up the attitude of GPs to chronic fatigue, doesn't it? I'm struggling to think of anyone with CFS who doesn't merit thorough investigation for the causes of their ill-health. Oh, hang on, it's all in the mind, isn't it?
Bristol University has published a Lymes map of the country ,showing the hot spots.If living in those areas and with a habit of walking through grass etc in the countryside it is worth thinking about Lymes as a cause of illness.
Funny that the areas where I have lived as well as those where I'd spent most of my time enjoying outdoor pursuits have high levels of ticks, according to the linked map.
NHS 2015 list of areas where a high population of ticks have been found:
Thank you all for posting the links. I think it is fair to say however that the Bristol study was not received with a lot of enthusiasm by the Lyme community because of its concentration on dogs, and certainly that's how the media presented it.
What needed to be stressed amongst other things was:
1. Lyme Disease (NOT Lymes Disease) can be accompanied by other bacterial, viral and mycotoxin problems, sometimes chronic, for which the NHS has no tests.
2. Lyme disease and it's co-infections sometimes do not manifest themselves for weeks, months, years or even decades whilst they change form and embed themselves in all corners of the body.
3. People should NOT rely on the much vaunted bullseye rash to confirm the infection.
4. If someone finds a tick on themselves they can send it off for testing to check if it is infected. Meanwhile treatment can begin with doxycycline. This should last for 6 weeks at least.
5. NHS tests are UNRELIABLE (sound familiar??). Private testing in USA and Germany is reliable.
6. Don't rely on the distribution map as the be all and end all of distribution. Ticks can be found in gardens, parks, football pitches etc. etc. Deer and mice for example don't restrict their movements to moorland areas. A friend of mine picked up a tick in her garden in urban Romford!
7. There are over 100 variations in each case of the bartonella and babesia Lyme Disease co-infections and no accurate tests for any of them. It requires an expert doctor to identify them.
Lyme Disease can be a killer. In communities dealing with the illness there are notifications every week of yet another victim. Such victim numbers of course only include those who know that they have Lyme Disease. There are no numbers available for those whose deaths are "unexplained" and possibly due to Lyme, or indeed how many people there are on sites such as this one with a variety of illnesses diagnosed as thyroid disease, gut issues, depression or numerous other things caused by Lyme.
I like the Asyra Tests; it certainly seems to identify things known only to yourself! But I don't know if I'm convinced by their remedies. Although in fairness, it may be cos I don't go back and it really needs a course of treatment.
The initial cost is £150 and follow ups are £100, plus the treatment drops are about £8
I used the Clinic at Petersfield in Hampshire.
It is expensive - which is why I only go when desperate.
I think it is very expensive for a practitioner to buy the Set-Up and do the training, so not many do it.
If money were no object and it was nearer me, I would like to go more often as I think this is probably my favourite Alternative method.
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