Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Hi,
Daughter's MCS has worsened. This past week cannot sleep on her mattress, our couch bothers her also.
We have switched bedrooms, completely emptied bedroom.
I do not know what to do, until we figure out an area for her to sleep.
We have switched all cleaning products, gone fragrance free etc awhile ago.
I have rewashed her organic cotton sheets several times, etc. She has a cotton blanket, but has been washed in fragrance free detergent.
I am not sure if there is residue lingering from the fragranced detergents in her beddings, but all has been washed a few times in fragrance free.
Our house has been turned up side down removing items from rooms, to try and find any triggers. She has not been able to sleep for two nights.
Anyone has any ideas on what we may be able to use for bedding that she will not react.
She gets respiratory issues, so it gets hard to breath. We completely removed everything from room and out of desperation put in another mattress on hardwood floor, but it still bothers her breathing.
Her room has not carpeting and is bare bones now, except for a couple of metal stands and computer.
I cannot find one room in house that she is not bothered by.
Any ideas would be so appreciated. Thank you,
I have researched online and even the 100% organic mattresses can cause issues for people with MCS.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
| IP: Logged |
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I do not know a whole lot about MCS. I found this website, which you probably have seen, but thought maybe you could review the list.
IDENTIFYING ENVIRONMENTAL ILLNESS & MOLD EXPOSURE IN PATIENTS WITH PERSISTENT LYME DISEASE
Lisa L. Nagy, MD Video $15.
(Excellent to get, even if mold is not an issue, this is full of great information.)
She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the recent ILADS conference.
It's a great presentation to see. The DVD can be ordered. Great detail about toxicity issues also here:
posted
Dear Jane: I have MCS too. I have to sleep on all organic bedding and my mattress is organic. Organic things do tend to smell "barnish" or green but I got over that.... It was the true chemicals that do me in.
The infrared sauna has helped me tremendously with this. I go to one in a pilates studio and shower afterwards. I do this almost every day.
The organic mattress I have was made by the crib company -Naturpedic. IT is not the softest around but I could handle it and nothing else was even plausible. The cost is much more reasonable than others out there. I am so sorry you all are going through this... It makes Lyme that much harder.
I would be happy to share anything else-- Baking soda might get rid of any lingering smells from old soaps as might vinegar. I always use those two when trying to get something really "free". Blessings to you all... you will get through this...
Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Some people say leaky gut is responsible for chemical sensitivity. Don't know what you do about it. Maybe look into this?
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Jane2904: She gets respiratory issues, so it gets hard to breath.
You can search for salt inhaler at Amazon.com and at eBay.com. This kills germs, reduces inflammation, helps to open the airways.
Also, salt lamps might help too. The negative ions from them are soothing. Search for salt lamp on Amazon.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
It sounds like a challenging situation for you and your daughter. Like so many here, i also have chemical sensitivities.
As willbeatthis says, baking soda can be quite helpful for getting detergent residues out of clothing and bedding.
One supplement that helps me with allergic reactions is Tri-salts, which is made by "ecological formulas". It's quite inexpensive. One only needs to take a half a teaspoon in some water throughout the day.
Because i have a hard time swallowing powders, a friend makes capsules for me: a double ot (00) capsule equals a half a teaspoon.
This formula can be purchased online at iherb or amazon or any of several vendors.
The other idea that comes to me is a quality air purifier. I just purchased an "airpura" after extensive research. So far i'm quite satisfied with it, and on low it isn't too loud.
Sending peace and ease ~ riverspirit
Posts: 164 | From North America | Registered: Mar 2009
| IP: Logged |
It sounds like a challenging situation for you and your daughter. Like so many here, i also have chemical sensitivities.
As willbeatthis says, baking soda can be quite helpful for getting detergent residues out of clothing and bedding.
One supplement that helps me with allergic reactions is Tri-salts, which is made by "ecological formulas". It's quite inexpensive. One only needs to take a half a teaspoon in some water throughout the day.
Because i have a hard time swallowing powders, a friend makes capsules for me: a double ot (00) capsule equals a half a teaspoon.
This formula can be purchased online at iherb or amazon or any of several vendors.
The other idea that comes to me is a quality air purifier. I just purchased an "airpura" after extensive research. So far i'm quite satisfied with it, and on low it isn't too loud.
Sending peace and ease ~ riverspirit
Posts: 164 | From North America | Registered: Mar 2009
| IP: Logged |
posted
Sounds kind of dire to me - can she sleep in her clothes, and if she can still touch her clothes, what about creating a set-up out of them, even pinning them together so she can wrap herself in them?
I've had severe MCS and had to get very creative, as in only have the things around me that I can touch, and even if the protection seems nuts, maybe it's the only stuff we can touch. Luckily, I had one blanket left that I could touch.
Good news is, I'm now recovering through detoxing in a FIR sauna - first it was a biomat, and now a portable FIR tent. I think you could find a tent for slightly under $200 online.
It's working - after 6 months of sweating out toxins once a week, I could handle smells again. And now I'm gradually starting to be able to touch materials again.
If she tries the sweating, she's supposed to stay in until she sweats, then shower off the toxins.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
3. New organic sheets washed ONLY with fragrance free detergent she can tolerate. Sheets that have ever been washed with regular detergent will never be ok.
4. Try a mattress cover to block smells from the mattress, washing the cover multiple times with fragrance free detergent. May have to try a couple of different types of covers to see which one she can tolerate best.
Our hearts go out to her. My daughter says she understands her agony and how important it is for her to have a "safe place".
Posts: 677 | From Virginia | Registered: Sep 2002
| IP: Logged |
manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
I too have had severe issue and could not even smell anything as I would have vomited easy from anything.
As I was in treatment and did reduce the infections and taking binders , I added sauna.I did try saunas for very long and if she sweats in sauna she will released this toxins out through her skin.
When I was in high dosages to treat bartonella it was horrible feeling and sufering from the smell.But sauna saved me.In the break from the treatment I continued sauna and I finally could go to the store and walk right where the detergents are and have had no problems with it.
Than babesia Fully exsploded as it was untreated and I have had to be in high dosages again to treat babesia.The MCS started again and I felt toxic again from the drugs.I went in back to saunas daily for 15-20 minutes.I sweat around the head and the face.
This makes me feel better and like I can breath.I found saunas exstremely helpful for it.Yes I tried binders.The best of all was Iv Ozone to detox.But was short lived in my case as I have had a babesia untreated at the time and blew up babesia as it feeds it.
I also have used homepathic formula , Vials and as well bionic with high dosages of activated corcoal in empty stomak after I had a coffe enema first so the body /gut was almost empty and it worked better to dump the toxins out of the cells.
So you can get better with the above.I am not sure which one you can efford but saunas should be for the entire family helpful and you can find cheaper ones.
Mine is a infrared saunas ( they are the best in the market for all the reasons that are used on saunas topic).
I have also done 8 liver flushes that helped my liver and cleaned most of parasites before i started antibiotics.This way you are ready to handle chemicals otherwise is a nightmare.Some have issues with pathways for detoxing and this need to be addressed as well.
It takes time but if you address the infections over time you reduce them and do some cofee enema , binders and sauna as cheapest than her life will be easier.I used to get all the bed sheets for allergis that are exspensive and change mattreses and change flagrance free before I found out I have lyme and coinfections.
Now I spent on treatment and life it has become easier to handle rather than investing in the around area.She need to clean her infections and detox as much as posible.
Posts: 1379 | From disable | Registered: Aug 2011
| IP: Logged |
Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Thanks to each and everyone that took the time to post.
I am reading each post and will look into and try suggestions.
Thank you so much. You are all truly angels!!
Posts: 1357 | From Massachusetts | Registered: Jun 2008
| IP: Logged |
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
So sorry for your dilemma.
You've been offered wonderful ideas and resources here.
We've been there too, our daughter and myself.
Cotton barrier cloth is very useful...to cover many things from mattresses to bookcases. It is a heavy tightly woven fabric.....you'll have to Google a source.
Another useful item is tin foil.....can be used to cover many things, block openings around and under the doors etc.
Perhaps an aluminum cot without the mattress would be a good start......use clothes or whatever is safe for bedding as someone suggested above.
I wonder about the wisdom of having a computer in the bedroom. Books and computers are best kept in another part of the house.
And I can't stop writing until I have mentioned food. The beauty of this....it can be done right now. This is the easiest way to reduce the total load in the barrel (our bodies). We found that mono meals helped a lot, one food per meal.....if it sounds drastic, it is, however it is a great help to getting back to tolerating the world. Less drastic is two to three pure whole foods per meal.....food in it's natural state.
And finally.....chemically sensitive people are most often deficient in the amino acid taurine. It is water soluble and can be safely taken in very large doses. Best bet is to purchase the powder/crystals and mix it in water...it is tasteless. That way one avoids the excipients. Luckily it is rather inexpensive. Now brand offers one and there are others.
Taurine is involved in the detox process in many ways. It also plays a major role in the brain as an 'inhibitory' neurotransmitter. For that reason it can be useful in the treatment of anxiety, seizures, insomnia, restlessness, irritability, agitation and depression. So it also inhibits the release of adrenaline/epinephrine - the stress hormone.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I haven't taken the time to read everyone's posts, but wanted to suggest checking out the recent MTHFR threads. May help the underlying issue so the MCS lessens. I have a good feeling about this...
Good luck.
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Thank you Lightfoot. Great suggestions, thanks so much.
Tammy, she does have one copy of MTHFR, but does not seem to tolerate the Methylation protocol.
We are trying small doses of a multi vit. that has the methylated forms in it. Going slow. Thanks for posting.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Jane - somehow, in baby steps, it seems that the methylation issue needs to be addressed. I think that may be your answer. How to go about it is another question.... Maybe just start with one supp (Falopro) and cut it into quarters as a start.
Good luck.
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
posted
The detoxigenomic liver bloodtest through Genova Diagnostic Lab will show which detox pathways are genetically compromised. It helped my doctor see more what was going on with me.
Still, irregardless of that diagnostic info, my salvation is the FIR sauna - it's the only way I'm slowly healing from MCS.
What I saw is I did it for 6 months with no result, and then suddenly, just like that, I could handle smells.
My doctor explained that I had unloaded just enough stored toxins to begin to handle processing new ones.
So if you go ahead and get an FIR sauna tent, or whatever form you get it, just stick with it because it takes time to sweat out the toxins.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I've crashed twice from mcs. You need to get her in a safe environment immediately. See if there is a relative or friend's house that she can tolerate. If so, empty out one room for her to stay in. Be careful of carbon air purifiers. I am reactive to coconut carbon which is the standard carbon used. Better off in a tolerable place with the windows open a crack for ventilation. If not, check out hotels near you that may have a green room- tile floors, air purifier, organic bedding, fragrance free cleansers, and open windows. Hard to find, but not impossible. Once she has stabilized, you can follow the good suggestions people have made. For a mattress, try Heart of Vermont organic cotton futon as a less pricey alternative. Good luck!
Posts: 70 | From U.S.A. | Registered: Dec 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic