Things That have Worked for MCS
Somebody asked for a list of things that have worked against MCS.
That would be very useful.
I have had MCS over 10 years now, and I started self-treaing about 4 years ago.
I still suffer badly, but certain things have helped to greater and lesser extents.
1) Sunlight - My symptoms were greatly alleviated in March this year when I caught the week of sunshine. Clearly the general health of the immune system has a bearing on my MCS.
2) I have taken a detox supplement drink that cleans my mouth of stinging after an exposure.
3) A good fish oil seems to boost my immune system
4) I tried probiotics recently. I think my flora health has a big impact. I use oregano oil to clean my stomach, ( i.e. to clear up a stomach bug or a bad stomach, as well as to kill off candida), but I think it kills off everything else too. It's a sort of double-edged sword really. I've noticed that after taking Oregano Oil, yeast infections clear up, (which is good), but I can also suffer much worse witht the MCS on some occasions.
Probiotics seem to help, but I would be interested to know the best probiotic supplements.
5) I went on heavy metal detox course three years back. Removing fillings and cleaning my system seemed to improve my health.
My health was at it's worst 4 years ago, I was about say 65/100 for MCS severity.
I would say now I am about 40/100 for severity. Still not great at all, and on a bad day like today, pretty horrible.
I would really recommend only using DHEA after having an Adrenal Stress Profile saliva test performed and under supervision of a doctor - it is a steroid hormone after all. Sorry to hear it didn't have positive results for you Marcus but perhaps working with a doctor and over a longer period of time you might have a more positive outcome. Anecdotally at least the vast majority of MCS/EI sufferers have some degree and form of adrenal dysfunction - but it is important to determine exactly what is going on with appropriate testing.
It is my belief that MCS is primarily the result of neurological dysfunction due to toxic brain injury, specifically limbic kindling (which brain retraining theory is based upon). DHEA has properties that mean it may act to counteract the hypersensitivity of the limbic system that likely causes MCS symptoms. Basically brain retraining and DHEA should produce similar results in theory, just in very different ways on the face of it i.e. psychological techniques vs hormone supplementation.
I have heard of a few others having similar results with DHEA and also with medications that have similar effects on the brain e.g. low-dose antipsychotics.
I'm glad you're giving phosphatidylcholine (phospholipid exchange therapy, or PLX) a go Marcus, as a number of members here have reported recoveries from MCS using this approach.
I have just tried DHEA, and the results were bad.
I took 20mg twice the first day, and 20mg the next morning....and after that I was shot.
I was really suffering acutely for a couple of days.
I read up a bit on DHEA
and I suspect I have had MCS so long that my DHEA levels have gone back up.
I recently also bought some Phospholipid Choline, which seemed to have some nice effects.
...no miracle cure yet though...
As an MCS sufferer for some 20 years with Fibro for the last 2 years I have become increasingly interested in neural retraining, particularly after reading Normand Diodge's book. For many years I've always "known" that something was happening in the brain but without basis for this.
I moved to the mountains some time ago, and live a relatively "normal" life, in that I don't wear respirators and can functional relatively well, in comparison to many sufferers I read about.
However I've now become convinced that there is a road to recovery, wheras years before I thought this would never be possible. I too believe that neutal retraining is a part of this, but have been vert interested in your DHEA theory.
I was wondering whether you know if anyone else who has followed this regime having heard your story and then what the results have been?
Thanks for the reading suggestions. I feel it is high time I read these.
BTW, I cannot login on the post page, only on the home page....is it me or is it the site?
I really hope the book materializes, as I am sure it will, and goes on to be a great success and to help other people.
Unfortunately we are marginalized as sufferers of illnesses outside the textbook gamut, but I feel the tide is turning. I haven't read the most recent stats, but last time I looked, 20% of Americans suffered from some sort of MCS.
I did a lot of SEO last year, so if you want any help promoting the book when it's out, I will gladly do whatever is within my power.
One of the worst aspects of the illness is the brain dysfunction it causes, and for that reason I am acutely aware of how environmental illnesses like ADHD must wreck children's lives.
Almost all of these illnesses are interconnected, IMO.
I am actually working on a book that will be released as an ebook first. The first two chapters are completed - they detail a proposed root cause of MCS and other EIs and how continual exposure to various triggers (chemicals in MCS) perpetuates symptoms. I am part way through putting together a 4-stage "road map" for recovery which constitute the final four chapters. The path to recovery I propose is broad and includes detoxification (which would include use of Pall Protocol supplements) and neural desensitization (e.g. brain retraining programs and DHEA - as discussed).
I hope to get this out there as soon as possible but as with most things it has turned into a larger than expected project! When it is eventually out there and if it genuinely helps people I will of course try to push for media attention to get it to a wider audience...but there are a lot of "ifs" remaining at this stage...
The theory behind amygdala retraining is pretty solid and there are enough anecdotal reports of recovery using it to suggest it works for a subset of MCS patients at least.
Here's a short reading list for you which will show you where my "big picture" thinking comes from:
Unexplained Illnesses - Martin Pall
The Detoxx Book - Patricia Kane et al.
Betrayal by the Brain (or Tuning the Brain) - Jay Goldstein
The Brain That Changes Itself - Norman Doidge
It was Dr. Jay Goldstein's work that led me to give DHEA a try. He was basically treating patients with medications and nutrients with exactly the same aim as the brain retraining programs have. Same destination, different route. Goldstein's knowledge of neuroscience is hugely impressive...luckily his Betrayal by The Brain has a companion guide written by a successfully treated patient if his own text is too overwhelming in isolation.
DHEA can be ordered online as it is available as a nutritional supplement in the US. Some UK-based online companies sell it or your can go through iherb.com.
DHEA is a steroid hormone and as such should be treated with respect as it can have powerful side-effects as well as powerful beneficial effects. I would not recommend uing it without being supervised by a doctor. It can be converted to testosterone which obviously can create problems for some people. Hormones, particularly steroids, also place a not insignificant burden on liver detoxification pathways...and this is where I had problems. Luckily my MCS had gone fully into remission before these manifested and I ceased taking it as a precaution.
Hope you manage to get hold of some of those books and find them enlightening.
I'm disappearing on holiday for a couple of weeks but will reply when I can if you have any moe questions (maybe even from a Cretan internet cafe!).
Do I need to see a Dr to get it prescribed?
Does DHEA have any side-effects?
I am printing out your reply because there are things there that I will implement tout suite.
Your reply is fascinating.
I really think you must try and get on daytime telly and help other people. I don't know what the present equivalent to Richard and Judy is, but you need to help people.
I thought the Amagdyla training sounded a bit weird, but it sounds like a genuine treatment.
So what should I read besides Martin Pall?
I feel excited to hear your story, because it makes me feel that a normal life could be possible again.
Sunlight made a huge difference to the severity of my MCS symptoms. So much so that with the big difference in daylight hours here in the UK I found that in summer I was far less sensitive than in winter. A single exposure in winter would take days to recover from while in summer I would only experience symptoms for a matter of hours. You may be right that there is an an element of immunity involved here but I'd suggest it is more about neurotransmitters and brain chemistry since the weight of evidence suggests MCS is primarily neurological. As you are no doubt away serotonin production is triggered by sunlight and this neurotransmitter helps us maintain bouyant mood, cope with stress and anxiety, and reduces sensitivity to pain. In short, it acts as a buffer against many of the symptoms of MCS.
Prior to my full recovery I was avoiding ALL chemicals strictly for 2 years (including wearing a carbon filter mask everywhere except my bedroom and living room) and also taking many antioxidants and other supplements (including B12 and folic acid) which are now considered integral to Martin Pall's supplement protocol for MCS.
What I believe was the key to my recovery however was taking 25mg/day of the adrenal hormone DHEA. After a few days I started to notice many benefits from this including improved sleep quality, better stress tolerance, improved blood sugar control (no hypoglycaemia symptoms), and a much improved sense of general well-being. After a month I noticed MCS symptoms were significantly less severe and I think around 2-3 months I stopped wearing my mask and discovered I no longer needed it. I had the odd twinge in the following year or two but nothing at all since then. I have been able to tolerate chemical exposure as I did pre-MCS.
The key thing for me is understanding that MCS is due to hypersensitivity of the limbic system in the brain...something shown in mouse/rat models decades ago and now becoming widely accepted. To recover from MCS this must be reversed - this is the basis of brain retraining programs such as Gupta and DNRS. It is also why I believe DHEA worked for me in conjunction with chemical avoidance and Pall-type supplementation. DHEA is a neurosteroid that acts to enhance the action of the calming neurotransmitter GABA and is also itself neuroprotective. It would therefore be expected to do exactly what is needed in MCS - calm an overexcitable brain.
Glad to hear you have made significant improvements Marcus. I hope the 65/100 becomes 75/100 and higher very soon.
Keep us updated!