Wednesday 3 February 2010

XMRV testing in the UK

If anyone would like to be tested for XMRV in the UK, please email the address shown below for the latest options available to you.

contact@xmrvtesting.co.uk

Wednesday 27 January 2010

Detoxification

I recently performed a 'Toxic Elements Clearance Profile Urine Test' whilst under the care of a nutritional therapy practitioner.  It revealed my body has stored higher than recommended levels of lead, mercury, bismuth and gadolinium.  The level of gadolinium could be explained, as this substance was injected into my hips prior to an MRI scan, in an attempt to understand the joint pains I was experiencing.  The course of treatment to detoxify the body was the combination of a supplement named chlorella, and to take very hot baths using epsom salts.  I had to gradually build up the chlorella dosage, as even a very small quantity caused my body to experience a large detoxification reaction.  After an intense ten day period with the worst symptoms then behind me, I was able to increase the dosage to a reasonable level.  After a month taking chlorella, I began to notice an improvement of my immune reaction symptoms, hence researched into its other known benefits.  Along with detoxification, I found chlorella has substantial immune system balancing properties.  My practitioner used her contacts in an attempt to understand these effects and to provide further possible treatments.  This will be expanded upon another time, as the research unveiled more understanding to the underlying ME/CFS complications.  

The 'Breakspear' has performed a 'DNA Adducts Blood Test' that also revealed I have a heavy metal toxicity, this time attached to a gene. Epsom salts baths were again recommended, along with a niacin supplement to activate an immune response prior to each detoxification session.  I immediately noticed great benefit from this which got me thinking.  If this immune reaction assists the detoxification process, would I not get an improved response from a hotter temperature than a bath.  My idea was to join a health centre to use such facilities as the sauna and steam room.  As I am obviously unable to use the majority of the facilities, I requested a special compensatory rate.  The manager accepted this, which was extremely pleasing, as long a I provided a letter from my GP.  This activity is not only advantageous to my health but could begin to provide me with some independence.  At present a ten minute sauna, although made me feel incredible immediately afterwards, quickly brought on fatigue, foggy brain and sore glands all caused by the immune response, and hence I was unable to drive myself home.  I believe this reaction is beneficial if monitored closely to ensure my health does not decline.  The experience was a learning curve and an eye opener as I returned to my previous level of health by the second morning after the activity.  I hope to steadily increase the time spent in the sauna once the symptoms reduce, and eventually be well enough to drive myself, providing the start to the independence I seriously miss.

Tuesday 26 January 2010

Symptoms

I appreciate that ME/CFS has a long list of health issues and symptoms associated with it, but I can only discuss the ones that affect me.  The following I have labelled as my primary symptoms.  Post exercise fatigue (not even exercise but any small minor activities which includes an energetic conversation), sore lymph nodes and tissues, cognitive issues including foggy brain and anxiety, joint pains, and immune reactions causing sore throats and glands along with hot itchy sweating.  There seems to be a distinctive set of ME/CFS patients who additionally have stomach sensitivities caused by severe Irritable Bowel Syndrome (IBS).  As only a proportion suffer from this, I am calling this a secondary symptom.  This hypersensitivity caused an exaggeration to all of my primary symptoms along with a general feeling of malaise over the festive period.

I have realised that the nutritional treatment approach has begun to manage some of my other secondary symptoms.  My temperature control has improved whereby I do not overheat and sweat from a hot meal or drink (I still lose heat extremely easily) and my Gastroesophageal Reflux (GERD) has reduced.  A discussion about GERD will be explained in more detail another time.  I did not take the approach recommended by my GP to take antacids, as I have low stomach acid not high.  What has disheartened me is that my primary symptoms have now remained constant for over a year with no sign of improvement.  What I am hoping, is that over time the summation of all these secondary symptom minor improvements may eventually allow me to be self sufficient and live some sort of life which at present is just not possible.

Sunday 17 January 2010

Antiviral choice

Since the last post on antivirals, I have found that Valaciclovir is available at the 'Breakspear' and am to start the drug immediately.  I was initially offered Aciclovir, but as I have previously explained, Valaciclovir is more absorbable and hence what I have requested to use. The oral bioavailability of Valaciclovir is ~55% compared to ~10-20% for that of Aciclovir.  Dr Lerner's treatment for ME/CFS that commenced from EBV, used Valaciclovir over a prolonged period for as long as 36 months.  If I was to use Aciclovir it could take approximately three to five times longer to achieve the same results, so even though it is slightly more expensive the decision was easy.

Wednesday 13 January 2010

XMRV results

My result for XMRV was positive.  XMRV was undetected but abnormal using the PCR method but tested positive using the culture method. Can I now say I have XAND (XMRV Associated Neuroimmune Disorder)?