desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I am having a major MCS flare up.
My liver e.'s are slightly high AGAIN after just 2 weeks of mepron and I am noticing I cannot tolerate even the smallest chemical exposure.
Went into Home Depo and within 10 minutes I had a chemical reaction. My DH did some spackling in the house and I had the same reaction.
When they clean with chemicals at my office I get a reaction.. At home I only clean with essential oils and water. You get the picture.
So what gives? Is it from my slightly elevated liver e.s' (both in the 50's)and my liver not being able to detox?
I was doing well enough to exercise everyday and was working up a good sweat but cannot do that now due to a sports injury. Ever since I get injured I have gone downhill.
I cannot take Milk Thistle because of weed allergies. I do have Zhangs Hepa but it has mushrooms in and I have issues with that as I have a yeast allergy and a severe mold sensitivy from chronic black mold exposure.
I am too sick right now to do my IR sauna and have a sinus infection to boot.
I feel like my body is just reacting to everything right now and I don't know why or what to do. I want to live in a bubble. It does not help that my house was once filled with toxins; chronic/ 10 years of low level gas leak in kitchen (behind the wall), black mold and hidden mice infestation. All was remidated but I still think my house is getting me sick. At my wits end today I was ready to pack my bags and fly to California and lay on the beach:)
Sorry I went off a bit here but I am frustrated to go from feeling close to 75-85% functioning back down to this again.
Any ideas how to deal with MCS when even the "good " things bother me. And why does one get flare ups of MCS from time to time?
Thanks in advance. DW
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Acupuncture really helped me with MCS. So did focusing on adrenals. Are you taking lots of vitamin C? Also, diet.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
If you can find a doc who can support you for MCS, you can have him/her write a note and take it to HR at your work to accommodate you (for example, working for home when the cleaning crew is there, shifting hours, changing to a well-ventilated space, allowing an air filter in your work space, etc....).
Here's a link to The American Academy of Environmental Medicine. There's a doctor search on there if you want to pursue that route:
Since you're a home owner, this book is the bible for home repairs:
Prescriptions for a Healthy House
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Molybdenum, Magnesium, Zinc, Iron (do not supplement if not deficient), and Vitamin B12 support processing and detoxing of chemicals.
Additionally, other B-complex vitamins, antioxidants, enzymes & binders can all assist with the detoxing and tissue repair efforts.
Epsom salt bath or foot soaks can help.
Castor oil packs on the liver can also help - esp. with the elevated liver enzymes.
Can you take artichoke (the food variety, not the jerusalem version)? That is also very good for the liver.
Thyme essential oil can help support methylation (one of the primary detox pathways in the body), and also is good for killing fungus.
Copaiba essential oil is a natural anti-inflammatory and antihistamine, and is said to be more powerful than Prednisone without the negative side-effects.
I've found Copaiba essential oil to be very helpful for my arthritic hip, but may also help with other inflammatory or allergic issues.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
FYI, Molybdenum can cause problems if you have metal issues or allergies. I had bad problems with molybdenum.
Some of the top researchers for MCS are Martin Pall, Grace Ziem, and Gunnar Heuser.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
These are the notes I took at the 2011 Lyme Conference on MCS and mold. Maybe they will give you some ideas--like cholestyramine, alpha lipoic acid, etc.--to help you right now. Hope so.
2011 ILADS Conference
Identifying Environmental Illness & Mold Exposure in Patients with Persistent Lyme Disease
Dr. Lisa Nagy 10/29/11
The toxicity of mold is not well understood. Mold illness leads to chemical sensitivities. Many lyme patients have immune suppression/immune system damage first (due to mold, etc.) then they get lyme disease.
Usually, the cause is indoor mold from water intrusion. The key to this is a musty smell in the basement or other part of the house. A person with mold illness typically will have a white cell count of 3-4.
Mitochondrial disease: Dr. N. had this plus chemical sensitivity. Mold exposure in her home was the problem. (When she bought the house, the living room had a large, built-in aquarium in the wall complete with koi. A shed outside sheltered the aquarium. The mold from this structure was sucked into the house and sent throughout the house.) As a result, everyone in the family got Addison�s disease.
There is a $699 urine test to test for mold problems (it is a mycotoxin test).
Symptoms of a person with mold illness include: clothing tags itch them so they cut them off, bra gets too tight as they wear it (due to skin�s reaction to it)
If the mold is very toxic, you have to get rid of all of your possessions, including all clothing. It cannot be salvaged. If you wash and dry your moldy clothing at another person�s house, you will infect their dryer.
If you have this type of illness, you should prewash all new clothing.
Once a person with this problem gets away from mold, they will get sick the first 5 days (called �unshielding,� I believe), so they must stay out of stores for those days. Don�t go shopping. She advises giving these patients oxygen during this period. She recommends 2 hours per day for 18 days.
She also advises IV nutrients if they can afford it. She advises them to spend 10 minutes in the sauna after a few weeks away from the moldy environment. If they can tolerate that, they can slowly work up to 30 minutes.
She also advises 4 grams 4 times per day of cholestyramine.
She said that Dallas has the best allergy testing. She gave the following website: EHCD.com
She advises this type of patient to build a safe bedroom to detoxify all night. They cannot drink water in plastic ever again, only in glass containers. She mentioned Mountain Valley water as coming in glass containers. Then, you carry your water with you in a small glass container throughout the day.
Regular detergent and fabric softeners make these patients sick, also air fresheners, perfume, diesel exhaust. Husbands often disbelieve that these things are making the wife sick, and the marriage suffers. Women generally show these sensitivities before men. The men just go right to severe illness and skip the sensitivities phase.
If the patient has adrenal insufficiency, they may notice that they get teary at movies and commercials that are sentimental, etc.
She mentioned giving patients DHEA, 5 mg per day for 2 weeks and then increasing the dose. This helps with anxiety.
Toxicity may now have become the most common cause of adrenal insufficiency.
These people will have dysautonomia (usually diagnosed as POTS). They will go to sleep for hours after eating. So, to avoid going to sleep at work, they will skip meals. (She had this and she did this. She also described how weak the condition made her as a practicing MD. She eventually had to stop work.) The following website explains how to treat POTS: NDRF.org She stated that dysautonomia must be treated.
She gives alpha lipoic acid to all of her patients.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I have heard from lots of folks that anyone dealing with mold problems has to get that remediated, since mold could keep the health problem going.
Scott Forsgren at www.betterhealthguy.com is also good to check in with on that - you can read info at his site as well as contact him there.
I am getting over severe MCS by sweating in a FIR portable tent sauna. I don't understand what you mean when you say you're too sick to do it now - could you explain?
I sit in it until I sweat, then shower off in alternating warm and cool water.
I first sweated on a biomat once a week for 6 months. I saw no change in my condition for the first 6 months,
and my doctor said to just keep doing it, because there would come a time when the toxin load would be lower from the sweating,
and he was right - suddenly, one day 6 months later, I could be around smoke, perfume, cologne, bleach without having to leave the area.
Now I am continuing to sweat in it every 4 or 5 days to lose my sensitivity to touching chemicalized materials.
My doctor also recommended that we take Takesumi activated charcoal to help bind toxins.
Isn't it odd that the goal is to be able to handle the world's toxins again. Oh, joy.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"I don't understand what you mean when you say you're too sick to do it now - could you explain?
I sit in it until I sweat, then shower off in alternating warm and cool water."
If you have any kind of skin problems/candida problems, all the sweating can actually stir up more issues.
Excessive sweat and heat can be very draining to some folks and if you're very ill, it can be weakening.
It really depends on your constitutional make up, but heat can be really bad for some with MCS, while for others it can be very helpful.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
posted
Robin 123 that is great! I was just wondering earlier today if an infra red sauna could help my MCS. Are you saying that after getting in one 4 to 5 times a week for six months it's helping yours to go away? To be able to even be around perfume without wanting to leave is phenomenal.
Anything else you did that helped?
Catgirl - what did you do for your adrenals? Vit. C helps? What kind of diet is best for MCS?
Desertwind, I've had MCS for 10 years after Lyme/mold exposure. It got better for a few years after I got treated and got rid of all my moldy things, left the home, but then I was re-exposed to mold again and it came back. I think it's the mold.
You should be able to tell if your home's moldy, no? Do you have an HVAC system that the spores could have gotten into? Did you clean the walls, and the ceiling etc. well?
Posts: 631 | From the south | Registered: Nov 2008
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
By the way, there is a protocol for carbon monoxide poisoning. MCS is induced in many ways and depending on what way you're impaired, there's different treatment.
Albert Donnay has done a lot of research on it. Both him and Dr. Heuser recommend oxygen treatment.
Here's a link. You can contact Mr. Donnay directly too for referrals. He's very helpful:
MCS Referral & Resources 410-889-6666
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
quote:Originally posted by Judie: FYI, Molybdenum can cause problems if you have metal issues or allergies. I had bad problems with molybdenum.
You mean, if someone is allergic to molybdenum, they shouldn't take it? Of course, that's true.
I was just listing the minerals that the body uses when processing toxins and metabolic byproducts.
If one is deficient in any of them, then that will impair detoxing and then potentially cause or worsen MCS.
When one starts to enable detoxification after it has been stopped or blocked, that one can get a reaction to detoxing because of the toxins getting stirred up to be eliminated.
So this means one should go very slowly with tiny amounts of things first and then slowly increase only as tolerated. And toxin binders should also be used so that one does not re-absorb the toxins...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
posted
Thx, Judie, for explaining about some of us being able to handle sauna heat and some not.
Girl, yes re the FIR sauna healing me, but not 4-5 times a week! Start with once a week, then do every 6 days, then every 5, etc, to make sure you handle the detoxing ok.
I was so charged up about it when I first got it that I sweated on it everyday. I broke out in what I thought was poison oak, and that itchy break-out lasted 6 weeks! Just like a case of poison oak. Needless to say, I had to take a 6-week break!
It was my body, overwhelmed with having to detox too many toxins through my skin! In other words, the treatment was working only too well!
So, it took 6 months of weekly saunaing to greatly reduce sensitivity to smells, and now I'm working on reducing sensitivity to touching chemicalized surfaces.
What happened to me is that I was exposed to a fire next door - the water came into my room with all the smells of what burned in the fire. I then went over-the-top chemical sensitive and couldn't handle smells or touch anything!
That's when I went online to ask what was going on, since I had been born healthy!! And that's when someone picked up that I probably had Lyme - it was my last-straw event - my body couldn't handle no more.
That's why I say, even if events are horrible to go through sometimes, they might lead us to what we need to learn/know/do, as in my case, the fire occurence led me to find out I had had Lyme for the past 25 years.
So, back to saunaing - what also happens is that the time it takes to sweat in the sauna shortens. For me, it's now half to a third of the original time. It used to take close to an hour to break a sweat, and now it's anywhere from 20 minutes to a half hour.
So, go slow in the beginning. Stay in it an extra 5-10 minutes after breaking out into a sweat. Shower off afterwards, alternating between very warm and very cool water -
first of all, to wash off skin toxins, and second, to stimulate internal bile flow, which is also part of the detoxing.
Drink water during and afterwards. My doctor recommended taking Takesumi activated charcoal to help detox, and that's going fine.
One more thing - I have heard only too often that mold in one's environment is not a good thing, so if you have any ongoing mold exposure, you need to address that, environmentally.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I think there is a huge correlation between MCS and candida/yeast.. so get after that diet bigtime!
Are you taking high quality probiotics and saccromyces boulardii too?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Wow, the advice others gave on this topic is great!
TF, thanks for posting the ILADs info. I've read it before, but somehow it kind of gelled with me today. I wondered why dhea makes me feel better (toxins).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Oh my goodness!!
My computer was down over the weekend so I could not check this posting.
Thank you soooo very much to everyone for providing such great information.
I actually have printed out this posting so I can reflect on it without the harsh screen of the computer and really study what everyone has shared.
There is so much information here that I am not quite sure where to start so I guess from the beginning would be a good place.
Back at ya in a bit...Thanks again. DW
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
| 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