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Introduction 1 year 10 months ago #1

  • Panda
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Dear all,

What a great site this is. It covers most of the issues I have come across over the last 10 years. Does not appear to be just coincidence. I believe in a common denominator for most of my health issues: toxins and being a poor detoxifier.

I have developed MCS after laying wool flooring with a socalled wool quality label. At that time I did not know that it meant that the wool was treated with pesticides against moths. This set of my MCS career. From then on I was very sensitive to all sorts of checmicals and fragrances in particular. A bit later I discovered that we had lived in a house for many years in which wood preservatives containing Lidan and PCP had been used inside the house. A long period of removing treated wood and a big part of the contaminated belongings followed with the headache of what to have as a replacement.

3 years ago I had to work in a water damaged office building with mold problems. At the same time as having to fight off the mold issues I have had a tick bite and developed chronic lyme disease. With the lyme disease came chronic fatigue, insomnia, reactive postprandial hypogylcemia, hypothyriodism and adrenal fatigue.

For most of these issues I have had no or very little support from the medical profession in Germany.

Curently my biggest issue is being exposed to fragrances at the work place.

Regards

Panda
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Introduction 1 year 10 months ago #2

  • Jodie
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Hi Panda! Yours is an all-to-familiar story. Hopefully there will be plenty of info on here to help you thru your healing journey - you are most certainly not alone.

Best wishes,
Jodie
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Introduction 1 year 10 months ago #3

  • Panda
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Hi Jodie,

Yes, I am impressed by the amount of helpful information on this site.

This week I will ask a dermatologist to do a skin test to check for a fragrance allergy. This is more to have a proof for the employer in the hopes I will get some support to move me away from deodorants and perfumes.

Regards,
Panda
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Introduction 1 year 10 months ago #4

  • Jodie
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Well it would be nice and easy if that showed positive, tho many with MCS have been that route (that's usually the first test people go for) but most often nothing shows up. I've been tested for allergies , also for Porphria, liver problems & Mastocytosis. Eventually I got a diagnosis of Mast Cell Activation Disorder, just on my history + ruling everything else out, + a few of the meds for MCAD work for me. Like you, it was important I found a "official" name for this condition in order to get taken seriously, not by an employer as I'm now retired, but to get the rest of the medical profession & others around me to stop insisting I was crazy & was making it all up! Interestingly, Germany is a leader in research into MCAD.
Last Edit: 1 year 10 months ago by Jodie.
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Introduction 1 year 10 months ago #5

  • Panda
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Hi Jodie,

I did not go the route of allergy tests before because I thought that MCS is not an allergy. But a specialist for environmental medicine had told me that people with MCS often develop allergies after a while. Well, will see whether the patch test turns out to be positive.

You have mentioned porphyria. Is there a connection between MCS and porphyria? I have tested positive for HPU (Hämopyrrollactamie) a type of porphyria according to Dr. Klinghardt often combined with chronic lyme.
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Introduction 1 year 10 months ago #6

  • Jodie
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Hi Panda, symptoms of MCS are similar to some symptoms of Porphyria, which is why it's worth getting tested as part of a differential diagnosis.
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