Disclaimer You Must Make Your Own Decisions
I am not a doctor or practitioner of any kind. I have no medical training.
If you read this website you must make your own decisions on whether or not to follow any of the suggestions here. I cannot give advise, I can only make suggestions of things that you might consider looking into and suggest tests that you might have done.
You Do Not "Have" ME/CFS/Fibromyalgia
If you are reading this, please please please don’t be sucked in by your doctor’s suggestion that you “have” ME or CFS. You don’t.
Your doctor has identified the set of symptoms that you have – he or she should (but won’t) set about diagnosing their underlying cause or causes. Unless or until this is done you are unlikely to start improving.
ME is meaningless. As a very well known doctor in this field says: myalgic = pain (which is common in adrenal/thyroid/Lyme Disease patients) and encephalomyelitis = brain inflammation (from which you either recover or die!). (I used to have a link to his talk here, but sadly it has been removed) It’s a meaningless name for a non-existent illness.
Fibromyalgia is not a diagnosis any more than “headache” is a diagnosis. It is a simple statement of fact and is a symptom of an underlying condition that needs to be diagnosed and treated.
Don’t suffer as I did for 37 years. Get a proper diagnosis (which you might have to do for yourself via forums) and start getting the right treatment to help you improve.
What Is Causing Your Illness?
It is my opinion that Lyme Disease is the most common cause of ME/CFS/Fibromyalgia.
It is rare to have “just” Lyme – if your immune system isn’t functioning optimally you may well have other infections as well.
It isn’t “all” Lyme. Some people don’t have Lyme but do have other infections. Common ones include (but are not limited to) Bartonella, Babesia, Mycoplasma.
We all carry infections, but if your immune system is poor they may cause problems that a healthier person wouldn’t have.
Not just the obvious intestinal parasites. Blood borne parasites are much more common than most people realise.
These can be seen in live blood cell analysis. A finger prick test where the practitioner places a small drop of your blood on a microscope slide.
Lyme, infections, a head injury can damage the endocrine system. You may have secondary hypothyroidism, which most doctors will miss as your TSH will stay within range.
Most doctors will not acknowledge adrenal problems unless you have Addisons Disease or Cushings. You will probably need to order a saliva cortisol test, or other test, to determine your adrenal function.
For some people a severe overgrowth of candida can cause severe illness - the candida can be seen in your blood during live blood cell analysis.
Toxic mould in the environment can also be a big problem for many - especially if they live or work in an older building or one with damp issues.
A trauma to the skull can damage the pituitary. Your pituitary gland is responsible for maintaining the correct function of your thyroid, your adrenals and your sex hormones.
A damaged pituitary can cause many issues and symptoms.
Why Was ME Invented?
If you are prepared to accept any of these diagnoses, your doctor will be happy to let you “have” the condition and you will receive no further testing and treatment to help you improve. You are more likely to be put on a cocktail of drugs to control your symptoms which will ultimately lead to further deterioration.
I don’t know why so many doctors are prepared to leave their patients undiagnosed and untreated. I only know that they are. This is an international scandal and one that most doctors are party to. Whether this is intentional or not I have yet to work out.
So why was ME invented? I can only assume it was for convenience. Patients were becoming unwell with “mystery” illnesses. Illnesses that would take time and thought to diagnose properly. Busy doctors don’t have time and rely on outdated and inaccurate testing – rather than taking a full history, discussing symptoms and making a clinical diagnosis. Drug companies, I imagine, love people to stay ill and keep taking a cocktail of drugs to control their symptoms.
The big questions for me are:
- why is any doctor who thinks outside the box and tries to help vilified or disciplined by the GMC?
- why are so many doctors so rude and condescending to patients with these symptoms. This is a widespread attitude throughout the NHS.
- why are so many doctors prepared to leave their patients so ill? Yes, individual doctors maybe disciplined by the GMC – but if doctors stood together and insisted on helping their patients, what would the GMC do then?
- Why are so many doctors prepared to diagnose ME/CFS – even in children? This is the age of “evidence based” medicine where testing is king. Yet they will happily diagnose ME/CFS with no testing at all. A clear conflict of approaches.
In my opinion, for the majority of patients, yes, it is Lyme. Not for all, and it is rare “just” to have Lyme.
Something has weakened your immune system and so many infections become active.
It is often said that the immune system is made in the gut. A physical or emotional trauma can cause gut issues that weaken the immune system. Once the infections (viral, bacterial, fungal, parasitic, etc) take hold, the immune system can no longer cope.
To make things worse, these infections can undermine the endocrine system causing thyroid, adrenal, sex hormone and other problems which you might also need to address.
Lyme Disease can cause almost any set of symptoms you can imagine, including major neurological problems such as paralysis and psychosis. If you know anyone who suddenly develops psychotic episodes or unexplained paralysis, think Lyme.
The standard NHS text for Lyme is inaccurate but may pick up recent infections. If you are lucky enough to get a positive test that might be where your luck ends as you are unlikely to be offered adequate treatment and may go on to develop chronic symptoms.
If you suspect that you have Lyme it is vital that you educate yourself about effective treatments.
For effective treatment you will probably have to find a private practitioner.
For effective testing you will almost certainly have to get tested privately. For Facebook users, the Lyme Disease UK Forum has a list of private testing laboratories. Even if you aren’t sure about having Lyme, I highly recommend you join the group and ask questions.
I was diagnosed by Igenex in the States and now consult doctor Jess Armine in Philadelphia via Skype.
In the UK there are an increasing number of alternative practitioners who are starting to understand the impact of Lyme and how common it is – and are starting to offer herbal and other alternative protocols for Lyme, co-infections, parasites etc.
There are several LLMD (Lyme literate MDs) in the States who offer Skype consultations, as well as many other Lyme knowledgeable practitioners such as herbalists.
Dr Armine runs occasional clinics in the UK. See HERE for full details. I have to declare a financial interest as he pays me a fee to set up the UK clinics.