Got the results from my DNA Adducts, Metallthionein, Lymphocyte Sensitivity and Fat Cell VOC/Pesticide tests from Acumen. I will attempt to attach the results.
My MCS symptoms are severe: mucosal irritation of nasal passage and upper respiratory airways, shortness of breath, profuse non-allergic rhinitis, malaise, fatigue, muscle aches (flu-like symptoms) and severe hyperosmia. I'm also asthmatic and suffer from laryngopharangael reflux. My MCS started just over a year ago and after two quick-succession house moves trying to escape from an unknown environmental illness, now known to be MCS, it's time to face it head on especially as l'm signed off work due to it. Current triggers - everything.
The Burghwood recommendation is IV infusions (phosphatidylcholine) - or PLX - with LDN if needed to accept the IV and to treat inherent allergies. An alternative of oral supplements to the PLX has also been suggested.
Being in Scotland, geography may dictate my treatment path as well as my ability to tolerate a plane journey - perfumes, offgassing chemicals from upholstery, filtered air with trace kerosene fumes. The 'I Can Breathe' mask is good but not this good.
I'm interested in how my results compare to others who have had the Acumen MCS screening tests as above - what treatment path did you follow, with what results and over what timeframe?
Also, given my medical history (long term PPI medication and corticosteroid inhaler use), jumping into PLX treatment without consideration of potential underlying MCS causal factors is - in my view - a bit shortsighted and akin to bailing out a sinking boat as fast as the water is coming in, especially when the PLX will go into £1,000's. Have others had further diagnostic tests to get a better overall picture of digestive/gut health, etc? If so, what tests have you had done? Should clarify that the reflux is due to a lax lower oesophageal sphincter.
My GP bloods show borderline low calcium (classic PPI use trait) and low lymphocyte count (unsure why but has been low over roughly same period I've been on PPI's, OK prior) and Acumen bloods show low zinc. My diet wasn't a million miles away from the Paleo before MCS (to keep the reflux in check) and in the past month I've gone pretty much full Paleo. PPI's are notorious for causing B12 deficiency so I've got an active B12/folate test out to a lab (Medichecks) as well as Candida/leaky gut/sIgA (Dr Hauss Lab, Germany).
Long term corticosteroid use can cause adrenal insufficiency but I'm getting a lot of resistance from labs in them undertaking an Adrenal Stress Index due to inhaler influence on results. I get this but my "normal" levels are whatever they are now with inhaler use, and if these are sub-optimal then I'd kinda like to know. Have any asthmatics had this done whilst on meds? Also, has anyone considered or has had done a nutritional profile such as the Genova One or Nutreval Test? Of all the diagnostic tests I've reviewed, these are the most expensive. Biolab offer a Vitamin Profile but it is narrower in scope.
I've got a silver dental amalgam and there's traces of the infernal thing in my Metallothionein study (but according to Dr Econs this isn't the issue). Needless to say I've got in touch with a holistic biological dentist to see about its removal although will defer a decision on whether to pursue until I research the unintended consequences of removal further given my current MCS status.
I've got sample kits ready to be used for a Methylation Profile (Biolab) and Oxidative Stress Test (Genova - they don't seem to do the Detoxification Profile anymore) along with Lyme (Medichecks - basic ELISA) and histamine intolerance (Cerascreen). I'm going to look into the Gut Fermentation Profile (Biolab) pending outcome of stool results for Candida/leaky gut/sIgA. BHA Labs in Germany do the gold standard Lyme and chronic infection tests but these are £400+ each. I'm broadly aware of the efficacy of all of the above tests; I'm just trying to build a picture from the bottom up.
Regards LDN, I can get an NHS referral for my historical asthma-related allergies, I don't intend to pay more out for Burghwood to do this. However Burghwood - along with Breakspear - are of the opinion that inherent (IgE related) allergies are intrinsically linked and causal to MCS developing, and are therefore central to any treatment plan (not just to make the IV more palatable if I struggle to tolerate it, they want to cure me of all my allergies!). I need to be convinced on this and will be asking for research-backed scholarly reports. I'm assuming not everyone on here has asthma or suffers from hayfever? I have mild asthma but my IgE allergies are relatively strong (my RAST test last year showed that interestingly my total IgE value is in the middle of the normal range but I have specific allergens - grass/tree pollen, house dust, cats). Again, deferring a decision on this and treating with caution based on others testimonies of LDN/EPD treatment. Also, not sure how inherent asthma/allergies fits in with the fact that I have a demonstrable detox issue based on the Acumen lab results.
I took receipt of a Far Infrared Sauna this week (Gett Fitt Cocoon System - 2nd hand) - my wife can't wait to use it after our 2nd child is born!
Finally, thanks to Maff and the other contributors for this invaluable site.
P.S. Chemical avoidance is important and with a strict 6 week avoidance period, including making the house chemical odourant free as far as practicable, I almost felt "normal" with even the hyperosmia easing, however all it took was a visit to the supermarket and one exposure lasting less than 5 seconds to put me to worse place than I'd been before, worse hyperosmia and sensitivity/symptoms. I haven't reached Ground Zero yet.
P.P.S. If anyone is considering an activated carbon air purifier for VOC capture, please get in touch. I conducted an empirical trial with two independent industrial VOC sensors in a controlled toxic environment (brand new offgassing suite!) with an iQAir Healthmate 250. Short summary - opening a window was as effective and significantly cheaper!
P.P.P.S. My GP is on side and my official work Sick Note states "Multiple Chemical Sensitivity" as the illness.
Burghwood have now supplied the attached Supplement Treatment Plan on the proviso that certain Acumen tests are repeated after 3 months. This is in conjunction with daily FIR saunas.
Reduced glutathione supplements - what are the thoughts on the efficacy of this supplement, absorption, etc? Some scholarly articles online that seem to show reasonable absorption with long term use, but consensus still seems to be still on the use of enablers (NAC et al), liposomal form or IV if you can get it (the Burghwood phosphatidylcholine infusion also contains glutathione).
My active B12 test result came back as high - slightly above reference range (my multi has active B12 and purposefully did test using supplements to ensure absorption due to PPI meds). Folate and ferritin are ok.
On the testing after 3 months - based on various forums, this seems a little soon and possibly £300 in testing to tell me little different from the above results, although the FIR sauna seems to do a reasonable job of Fat Cell VOC/pesticide reduction on a daily protocol (per Dr Myhill’s website). Has anyone actively monitored DNA Adducts/Metallothionein/VOCs during a treatment protocol to monitor progress or are MCS symptoms the better (cheaper) yard stick?
Thanks in advance,
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