Hi all new to Maff,s site
my wife has had severe mcsfor many years nowsince 2008.it started from getting a chemical exsposure at work a dry cleaning chemical called perclethorylene, now banned as its been fatal to so many people.Ihave been through an ordeal.I not go into the full story but I have tried immunotheropy which did not work but made me severely worse to the point I was reacting to eveything and became seveley mcs and es and reacting to all foods,completley bedroom bound reacting to eveythingto thr point of wanting to commit suicide just for relif as i felt there was no light at the end of a very dark tunnel I tried homeopathic remedy phosphorous and reacted to it and the became even more ill more sensitive.
I could only sit or stand in 2 parts of the bedroom and just trying to control my thoughts and what i looked at .As even looking at my feet I would get pain from doing that how the bloody hell can i react to just looking at my own feet but that was truly happening. some years i thought i was reacting to my mum, so she couldnt care for me,even though she was thoroughly decontaminated of eveything even to the point of taking off her own clothes to be able to look after me.
then sometimes it would be with my son who was also caring for me I had no water heating or lighting,bed as reacting tov them all. I was freezing i could only just manage to eat two foods organic pork mince and and cabbage.
Then after receiving a shock that my husband then not my present had got another woman. something changed its like all the symtoms into a ball and shot off to the top of my headand disappeared to a little black dot and gone I was still left feeling with a very strange head but the terrible reacting to everything symptoms had vanished and i was so hung up on what my husband then had done that it took over and after months of trying to figure out what was going to do i eventually moved and ltake back my life still having to be very carefull and having reactions and bad days and better ones but never feeling correct in myself but still could be part of life again. Ilived in oxfordshire where the house seem to help me improve Ilived there for 2 years. then i met a guy and moved to wiltshire which the house wasnt great for me .We then moved to somerset the house is lovely but it didnt feel grat again Istarted going dwn hill Istill tried to persevere though Idid start doing things to try get highs and keep my mind occupied like dancing and performing on stage choregrapghing my own routines mixing music and sorting costumes I loved it became vobssesed and stressed very stressed also got exsposed to a few smells and also was able to have a larger bliss . but still only eating the same 2 foods .Then bang without warnigits all started again its back to how it was at firstIam now reacting to everything again thought etc. I am in a state Why am Ireacting to everything even yawning and burping comes problems. When i hear of people with mcs they say they have a reaction then it goes but with me the domino effect just wont stop. whats going on? Itried brain training before and Iknow it can work for some people but it didnt for me in fact it made me worse more anxious more stressed then switching up the stress response and got worse However I am sure that its neurological as i am so sensitive i can feel my own brain and nervous system how its working or should i say how faulty it is. Iwould definatley say neurons or something are firing or missfiring its terrible I am justasking is there anyone out there that has taken anti psycotic drugs to stop this happening if so what drug and how much what drugs are good for mcs that is severe and is there a neurogolist or sombody that deals with chemically injured brain as to me it defenatley needs a kind of trasmiter blocker to stop this. Its like the brainjust switching off or blocking Regarding DHEA are there any forms without presevatives additives as pure as it can be. How often should it be taken Also could i sneak it in my food. Asmall drop as I have reactions and masive trouble not having reactions from digesting most things I cannot tolerate supplements and only eat them 2 foods mentioned earlier i am not sure but Imaybe reacting to those aswell also some days its better than others i get a high at first then gradually all my syptoms return pain etc Ined to be able to sneak anything into my body without my body and brain detecting it as such please can someone help from a desperate person with severe mcs and es

I am so sorry you have been through so much mcsfriend. I think all of us here and those who just pass through my site have been through the mill - I certainly have, ME/CFS from age 11, a battle with MCS over a perod of 5+ years (which I won and gained hope from!), a failed marriage etc.
I wish I had spoken to you before you had immunotherapy as I had a similar reaction with EPD, which is a form of immunotherapy. It made everything ten times worse and this was being recommended by seemingly enlightened doctors in private practice.
You're correct that MCS is neurological in nature, as is ME/CFS and other invisible illnesses. Research is showing without a doubt that we have neural hypersensitivity to stimuli and show signs of limbic kindling - the extreme end of which results in seizures and epilepsy. This is why I have no problem recommending brain retraining programs as they are certainly on the right track with utilising neural plasticity to reduce the hypersensitivity.
MCS is not a psychological disorder but as your story shows, certain events that affect us strongly emotionally, can have an effect on symptoms and severity of the condition. I have no qualms about admitting when I've felt happiest in my life, it has become much easier to deal with ME/CFS and symptoms seem to reduce. This is no coincidence, it's biochemistry. Happiness (prolonged especially) releases hormones, neurotransmitters, immune chemicals (and more) that reduce the limbic kindling and hypersensitivity in the brains of those of us with these conditions. This is why in my reply to your other post I mentioned meditation as being the key to my MCS recovery... I truly believe it was and that neural plasticity and "molecules of emotion" (see Candace Pert, PhD's book of the same name) were the key.

I will reply again to this message ASAP and try to answer your specific questions when I have the time to do them justice and really help you. For now, please don't give up, look for the light, and have hope. MCS and your other sensitivities can be beaten!

Angela is asking have you personally taken DHEA

Yes, I have at 25mg/day as one dose in the morning. I found it gave me a sense of well-being and much improved resilience to stress. I also believe it was a major factor in my recovery from MCS; the science of both MCS being neurological and DHEA a neurosteroid with calming effects make much logical sense. I’ll be explaining this in detail in my upcoming articles and book about my recovery - free on the site.
Sorry can’t reply with more right now - I’m getting my 2 year old daughter ready for bed! Hope this answers the basic question at least. Best wishes; Maff.

can you recommend a good mcs/es practioner which goes into great depths etc than most doctors


just revisited breakspear hospital with Angela there going to run tests which will take about a month to come back with results
after badgering them about info on DHEA and wheather they think it would work they agreed perhap but wouldnt advise taking untill tests are back but not sure Angela can cope for a month without nothing being done also there was a suggestion of using a drug called Naltrexone we wernt really sure what it was or if it would be any good wondered if anyone else has been offered this and any info on it would be greatful