Hi all: Just wanted to introduce myself. I'm Theresa and I've been affected by MCS for almost 4 years. I got the Whooping Cough and was on antibiotics and steriods for about 9 months straight. About a month after I was off the antibiotics, I started noticing that chemical smells were making it hard for me to breath. It went from chemicals to all kinds of personal care products, then car exhaust, diesel fuel, smoke, then food that never bothered me before started to make me react (itching in my mouth, ears, eyes, throat, sometimes my entire body), and now I have just been dx with Vasculitis (hives all over).

I just went to see an environmental Dr. Wednesday. Just starting with her. She took a lot of blood, and I have more tests to do to see if there is somewhere we can start.

I'm a mess. Can't go anywhere, can't have people in. Big strain on family life and with husband.

Just wanted to say \"Hi\". Look forward to talking to everyone and getting information. Take care.

Theresa

Hi Theresa,

Welcome to the site

I thought I'd share a bit about my MCS experience as you have. I've suffered from MCS for 6 years but thankfully have been able to get it under control to a great degree over the past few years. I did this through a combination of strict avoidance of triggers and by improving my balance of hormones and neurotransmitters through nutrients, herbs, and lifestyle changes.

I also associate my illness with antibiotics as I was given repeated courses as a child for ear and throat infections. At age 11 I developed chronic fatigue syndrome/M.E. and then MCS joined the party when I was 22.

My MCS developed in a similar way to yours in what seems to be a common pattern. I first became sensitive to perfume itself, then fragranced products such as fabric softener, then cigarette smoke, car exhaust, fuel and just about every other chemical with an odour!

My symptoms differ a lot from yours however which just goes to show how this illness affects everyone differently. Rather than typical allergy symptoms and skin conditions my symptoms are more neurological and include dizziness, confusion, rapid heart beat, severe aching and flu-like symptoms, depression etc. In many ways MCS triggers just worsen my CFS/ME symptoms, like an acute flare-up.

I guess I was \"lucky\" in some ways as when I developed MCS I was not married, didn't have kids, and was already on disability benefits due to CFS/ME. MCS was still devastating to me but it must be unbearable when you have commitments and relationships to maintain.

I really wish you all the best and if you want to know more specifics about what has helped me then please write back.

Keep in mind that you can recover from MCS despite what others may suggest to the contrary

Take care.<br /><br />Post edited by: Maff, at: 2007/11/29 15:11

Hi Maff: I'm so sorry you have had a hard time of it at such a young age. Could not have been any fun!! I

You are right, it is hard to deal with MCS when you can't go out with your husband and he has to change his clothes when he gets in the house because he is bringing all the chemical smells home from wherever he was. Sometimes if the smells are really strong, he has to take another shower for me too. He is not having any fun either!! Same for my son.

Yes, I would love to hear how you were able to get better with this MCS thing.

I have to say that lately I have been having dizzy spells. I'm in the process of seeing if there is something \&quot;physically\&quot; wrong or if it is the chemical thing. One doctor thinks it is some medication I'm on and the other one thinks it could be a blood pressure issue and not the meds. Another appointment on Wed. to see if ANYONE can tell me ANYTHING.

Please give me details as to what you used. Like I said in my other post, I have just started with an Inviromental Doctor and am hoping there is something she can do to help me. All other avenues have been less than helpful.

Take care, and I look forward to hearing from you. Thanks for that last comment about being able to heal from this contrary to what everyone else is telling me. I really needed that!! Thanks.

Theresa

Hi Theresa,

Thanks for your comments. I've certainly had it rough but like I said, I was able to deal with it without it affecting anybody else, for you your whole family is affected. I really hope you are able to get on top of it soon. If people only knew the impact this illness can have!

Which medication(s) are you currently taking? Medications in general are not a good idea for most people with MCS but everyone is different so perhaps you are ok with them. Dizziness is such a common symptom that it could be down to anything so it's good that you are having it checked out. It could be a side-effect of medication, a blood pressure issue as has been suggested to you, a sign of another illnes, it could be a sign of low blood sugar (hypoglycemia) which seems to be a common complaint amongst MCS sufferers, or it could be a reaction to chemicals.

I was in exactly the same position as you only a couple of years ago, having to wear a mask wherever I went and when people visited. I am happy to say I haven't needed to wear it all for 2 years now (touch wood!). The great thing was that my chemical sensitivities disappeared almost as quickly as they had developed. Of course it is hard to say for sure exactly what led to this (I didn't do things under controlled experiment conditions!) but I can tell you my personal feelings about what helped.

I think the most important thing to do, which is obvious to most people with this illness, is to avoid chemicals that trigger your symptoms. In fact, it is best to avoid all volatile organic chemicals (VOCs) completely. This is a neccessity for many MCS patients anyway since having any chemicals around is unbearable! There is a fair amount of research suggesting MCS is a neurological condition in which certain parts of the brain become hypersensitive to chemicals. Through researching the subject and my own personal experience of MCS I feel this is correct. Dr. Claudia Miller has proposed a theory called Toxicant Induced Loss of Tolerance (TILT)(http://www.ei-resource.org/toxicant-indu...of-tolerance-(tilt)/) based on the neurological hypothesis and this explains that MCS is similar to an addiction in the way it affects brain chemistry. It also explains that if we avoid contact with VOCs for a prolonged period then our tolerance builds up again and we are once again able to tolerate exposures at reasonable levels. I strictly avoided exposures for a period of 2-3 years and have now regained a great deal of tolerance and am virtually 'normal' again.

The other things that seemed to help with my symptoms all had a beneficial effect on brain chemistry. As part of my illness I suffered from SAD (winter depression) and found that in winter my MCS symptoms were far worse and in summer they were a lot better and for a few months every year I could tolerate almost everything. With this in mind I found that anything that helped SAD also helped my MCS symptoms. These things included maximising my exposure to daylight and sunshine, taking nutritional supplements and herbs for depression (e.g. 5-htp, st. johns wort, rhodiola) and exercising as much as was possible. In addition I found that balancing my hormones (particularly adrenal and thyroid) was extremely important for all aspects of my illness. DHEA in particular was very helpful, not just with MCS symptoms but with mood, energy, blood sugar balance and more.

Given that there seems to be a connection between MCS and brain chemistry it's possible that antidepressant drugs might help but I tried many and none of them did a thing, good or bad. Many people find they make them worse so I would personally rather suggest natural methods!

I hope some of this makes sense and is helpful. Let me know if you want anything explaining a bit more. <br /><br />Post edited by: Maff, at: 2007/12/03 16:42

Hi Maff: Thanks for the reply. Well, I'm on a few meds. that I've been on for years that have not effected me this way and a few new ones due to having been dx. with vasculitis just this past summer. I have taken myself off one of the meds. from this past summer and the dizziness is still there. The doc. claims that the remaining med. should not be making me dizzy. He thinks it is blood pressure issues - I've borrowed my friend's blood pressure kit and have been taking it for three days - it is not my blood pressure - it is fine from what I can tell - I have ANOTHER appointment with my primary care phy. tomorrow to check this all out again - we'll see what he has to say and go from there.

I, too, do a little better in the summer, but things still do bother me. I have to shut the windows if there is something in the air like grill smoke or dryer sheets from a few houses down. I have to go inside if they are present in the air. I do better because people can come and visit me a little more because I can take them out on my deck and talk. The odors still effect me the same, I just have a bit more space outside to do more. Plus, it is less depressing when you can get outside in the sun. I don't know if it helpful health-wise to me, but it sure beats being closed up ALL winter looking at the same four walls. I HATE winter. Cold air bothers my lungs too, so I have to wear my mask even in the car most of the time because of the cold air.

Thanks for the info. on what you use to combat the MCS. I have to do more blood work this week and then I go back to my new Inviromental Dr. in the beginning of the new year. I can't wait to see what she finds out and what she thinks we should do next. I hope it is something I will think is appropriate and useful.

Thanks again, Maff.

Take care. Theresa

Hi Theresa,
I was just about to leave the forum when I read your post.

I have a wonderful, caring husband and still he has his times when he finds it hard to be my caregiver. Then I found out about a yahoo group called \&quot;mcs-partners\&quot;.

He joined. There are very few members, but they helped him feel less alone.

This illness is very isolating. Not only to us, but also to our families who can no longer entertain friends at our homes easily.

Here's the link:
health.groups.yahoo.com/group/mcs-partners/

I encourage your husband to join and chat. My hubby would love to hear others' stories. They need to know that they are not the only ones going through what they have to go through for our sakes!

Lady Itchalot
(yeah, my first sign of reaction is hives. If I ignore it, then it moves on to more neurological problems...)