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TOPIC: My MCS has vanished

My MCS has vanished 3 years 1 day ago #7

  • Sandy
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Personally I am not sure I would switch mcs for an AS withdrawal/addiction so this would not be something I would attempt. I had to read what the cure was ans since DHEA came to the for front I have a few questions.

I have had my DHEA tested and assume it is fine as I did not hear anything about it. My question is did you have this test too and were your levels low?

I was tested at the MCS clinic they do not treat just test but will advise your doc. Or call and say take a vitamin ect. Was your DHEA treatment started by a doctor if so which type of doctor... or was it something you did on your own... via health food store supplements?

When I had the testing done I was taking a naturopathic spray called Thyro by Viatrexx a product I can't find much information on and do question in my quiet moments... how it helps before I started it I could barely contribute to my care getting to the naturopaths office did me in ... I can't be sure but I think what he heard was mostly jibberish... this helped in that respect... but I my movet movement disorder which I had briefly before this spray has certainly kicked up and is much worse.

I was wondering if the spray could have any affect on the DHEA results the doctor who did the test did not know. I have all but fallen out of love with my naturopath have postponed my next apt think I am only going to get the spray and to discuss a few other things ... which a group of women I know who use him say he is a wizard fixing... hormone to be exact.

I need to think and have started taking D ribose corvalen brand by douglas labs... it is like crack to me and I could and did actually slow and stop the spray mostly cause I forgot about it... A real bad experience has me back on the spray and the D ribose....

I read the other blog about D ribose and yeast and did not find a response from the fibro cf.. doc.. guess we are still waiting for him to reply ... are we?

I am debating continuing D ribose almost done the first container at 3xs a day would go to 2xs if I can sort out the yeast issue... I am still not sure about.

I had a limb dragging incident this wk that scared the crap out of me... could be hormonal .. a normal person would have went to the hosp... I had a cop stop and ask me if I needed help... I said no... kept dragging my leg till it wanted to walk... and focusing on moving forward...

May sound odd to some people but I react so badly to drugs and all hosp want to do is drug me up... I am too scared to go to hosp... not till I am blue and not conscious they do not know how to treat me and have hurt me in the past.
This should have it's own thread...

How to get health care that does not hurt us??? maybe it is... sorry if I am jumping the gun should have searched first... still in the thick of it really and not sure if I will be able to read more or if I am shut down now... I never know.
So tend to put too much in one post... sorry.
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My MCS has vanished 2 years 11 months ago #8

  • Maff
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As this thread is still attracting posts I just wanted to clear up for you all that my own DHEA use was overseen by a medical doctor (MD). I also had my DHEA and cortisol tested before and during treatment. This was using the Adrenal Stress Index (ASI) saliva tests widely used in medical research and routinely recommended by medical doctors, naturopaths and other medical professionals, at least those who are brave enough to treat us environmental and invisible illness patients!

My ASI results are complex and allude to an abnormal circadian rhythm - something I have been subsequently and independently diagnosed with by a neurologist. At some points of the day they are typically borderline low, and at others swing the other way. If anyone is interested, I did a write up on some of my results in the EiR Blog - My Adrenal Stress Index (ASI) Test Results

My main reason for posting today however was to let everyone know I always go through a doctor when using prescription or borderline treatments (DHEA being one of the latter). Nobody should self-treat with hormones or prescription medications without seeing a doctor and regular and appropriate testing is particularly important when dealing with hormone therapy.
If you are going through hell, keep going - Winston Churchill
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What does it mean to say "My MCS has vanished" 2 years 11 months ago #9

  • Galway
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Hi all, let me say I'm really glad to have found this site and forum, and appreciate all the insights. I have MCS for a year following a reno/mold exposure, that has definitely impacted my life (almost no shopping, visitors, or work meetings for me). My symptoms are textbook (brain fog, fading memory, tiredness) but the most disconcerting reaction I have to perfumes is anxiety and a flight response; I get downright rude sometimes. Current work on getting "better" hinge on calming neural pathways through meditative approaches and supplements (GABA, turmeric, methylcobalamin) and walking. (I have no tolerance for psychotropic drugs, so I couldn't follow that route.) I don't really hold out much hope that I'll ever be highly tolerant of scents again in this life; but to be honest, if it were not for the anxiety, and to a lesser extent the other symptoms, I don't think this condition would be all that debilitating for me. So I'm wondering if those of you who no longer experience MCS (Maff, Kcall07), well, are you still MCS, but just without the reactions? That is, are you still highly aware of perfumes/ink/exhaust - sensitive of them - but not symptomatic beyond that? Or has even the *sensation* - the ability to sense the presence of the chemicals - "vanished"?
Last Edit: 2 years 11 months ago by Galway.
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What does it mean to say "My MCS has vanished" 2 years 11 months ago #10

  • Galway
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Matt Rixen reported (7 years ago) a cessation of "sensing" (smelling) after he had mercury dental fillings removed; he believes his MCS was caused via "oral galvinism", the generation of tiny amounts of electricity in his fillings. As for recovery, he reports "Part of the shock of recovery is the inability to sense these things [carpeting, upholstery, detergents, cleaning chemicals and computers] any longer, and having a hard time smelling even extremely strong scented compounds such as gasoline and similar." www.ei-resource.org/forum/multiple-chemi...e-recovery-from-mcs/ . I wonder, would that be almost too much recovery? Smell is an important sense, and the loss of smell could be as much a handicap - though of a very different nature - as MCS.
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My MCS has vanished 2 years 10 months ago #11

Thank you sharing this information. What was the anti-psychotic use?
I'm desperate.
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My MCS has vanished 2 years 10 months ago #12

  • Maff
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Hi Galway. With the MCS symptoms you describe it sounds like you are experiencing the illness pretty much identically to what I went through. My feeling is that the 'Limbic Kindling' hypothesis of MCS etiology explained my symptoms and experience of the illness perfectly. I don't know if you're having any success(?), but the treatment approach you're taking is very much what I did (DHEA excepted) - with recovery being the ultimate result after 2-3 years.

On the subject of smell. I still smell all of the VOCs, both synthetic and naturally occurring (e.g. essential oils), that used to trigger my MCS reactions - I just don't suffer the symptoms any longer. I hadn't come across anyone losing their sense of smell in he context of MCS before you posted on the subject. I agree, that surely brings a whole new set of problems for an individual. From a personal point of view, my sense of smell is very good, but I would not describe it as being abnormally heightened now that MCS is thankfully no longer a worry for me; something I am eternally grateful for and if it can bring hope to just just one person I consider my own "journey" worth the struggle!

I hope you too will look back on MCS a few years from now as a very difficult period in your life, but one that made you stronger and opened your mind to a new view of the world and techniques such as meditation that can benefit your life in so many ways beyond MCS. All the best for a healthy and happy future...
If you are going through hell, keep going - Winston Churchill
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