Familyof5

Absolutely everyone has their own experiences. So here is what I think (and have experienced), indoor mold toxins have exploded in the last few decades causing more autoimmune illness. Because we have built homes that are so air tight it has allowed indoor mold toxins to flourish without typical "outdoor" mold competitors. This has genetically altered the indoor toxins and made them stronger and more potent and harmful to our health. More so than most people are ready to embrace. Chronic exposure to these toxins (from birth on for our children) compromise our immune systems so that we are not able to handle bacteria such as lyme, strep, we develop food intolerances that inflame our immune systems such as gluten, lactose, corn, etc. That is why making all these changes and casting the net wide helps us get better, but never completely well. I have had to be fanatical about removing mold toxins from my life in order to heal. Then all the other problems seem to resolve---slowly (3 years) but we are making very strong progress and haven't been healthier in years. I believe mold is a huge contributor to autoimmune illness, and mold is almost always invisible. Summary = I think mold is a larger culprit (if not the #1) to these illness than most people consider. Just my personal experience.

I took the stuff 4xs per day for months. I was very, very sick from mold. It worked wonders for my brain fog, dizziniess, numbness, tingling, twitching, headaches, fatigue, constant thirst, . The medicine was a miracle drug for me and set me on my way to get my life back. An fyi that it is approved for 4xs/day in adults. I felt better faster. And because I felt so good so quickly there was no doubt that toxic exposure was at the root of my illness. If mold is your problem, cholestyramine won't work forever, you eventually need to find the mold and remove the exposure.

Just looked on my children's lab reports and noted that Shoemaker's normal range for ACTH is: 8-37. For what it is worth. They haven't been tested for this recently and I can't get to their old lab reports to see if it was abnormal in the past. My experience has taught me that the "major" indicators for mold are C4a, MSH, TGF Beta 1, VIP, MMP9, ADH/Osmolality, Anti Gliadian Antibodies, Anticardiolipids. ACTH is one of the hormones that can go wild from mold illness, but correcting the other regulatory hormones will usually correct ACTH.

I moved into a home with a "3" and although it did "keep" us sick initially, the changes we made in the house have gotten the house to test now at a "1", which is considered to be average and healthy as far as I've heard. Our health has improved steadily along with the ERMI score. You can clean a 3 & a 4 for sure. You can start investigating where your problem may be by closing off certain rooms/areas for a couple of days to see if you feel any different while the room is closed off. We closed down the masterbathroom for a week. We then noticed we felt a lot better. Since then we took out toilet, sink, etc. and did find a lot of hidden mold that was not visible before we removed it. Also, another big culprit was the ventilation fan in the bathrooms. These were not installed properly and there was a good amount of mold growing in it which we couldn't see until we actually took it out. Air purifiers did not help us. All it did was blow the mold around even more. At our old house, we had mold inspectors go up into our attic and tell us it was perfectly clean. However, after a year my husband and I realized that the mold growing in the attic just looked like dust. It was not black or slimy, it looked like dust which is why we never thought it was mold. Stay strong and take it from me, if mold is your problem, it can be a long expensive road, but at least you have control over the illness. You can control your environment. It is truly empowering to clean up a moldy bathroom, feel better because of it, and know that you just improved your child's long term health by leaps and bounds. In the long run you and your kids will be healthier.

S&S....any results on ERMI yet?

my daughter started a coughing tic two summers ago. It got worse and worse as summer went on. Finally by early fall it was constant. I realized it was a tic. In November I took her off of gluten and her cough tic went away. It only comes back now when she eats gluten again.

Since I first posted this I have kept my dd off of lactose and virtually all dairy. Her finger licking tic has vanished. The only tics she is exhibiting now are some "snorting" type tics when she eats artificial flavors/colorings. Her focus and ability to learn has also showed dramitic and almost immediate and sustained results. She is also gluten free. It does make it hard to cook, but if you think about the fact that something your child eats makes his body move involuntarily and unable to learn....it really is a no brainer.

My experience, with myself, my husband, and all my children, is that if you are sick enough to find your way to this forum, it is generally not a place you may visit once or twice a week that is making you sick. It is a CHRONIC, long term, exposure that has made you ill. It is more than likely the place where you are spending the most time. I spent a lot of time accusing the school of causing my dd's illness, when in reality, it turned out to be my home. None of us want to believe that the home we feel safe in, and is our pride and joy and largest life investment could actually be making you sick. Believe me, it can. Look everywhere until you find it. Our mold looked like dust on our attic rafters. Dust. For years we just though it was dust, but it was actually toxic mold. Without obvious visual mold, ERMI testing is your best starting point.

It is not uncommon for toxic mold to cause tics and symptoms similar to tourettes. I wonder if the school has a chronic mold problem that hasn't been mentioned.

Hi, my husband has that dreaded genotype and well as one of my children. Moving out of our moldy home, staying on cholestyramine for maintenance,controlling diet to keep inflammation down, and doing all we can to constantly keep our air clean in our new environment has really made the difference in their health. For what it is worth. Also want to add that maybe your daughter is herxing, as the toxins are being pulled out of hiding they are trying to find somewhere new in the body to embed themselves. I found that when I first took cholestyramine for my mold binding I herxed like crazy. I was taking it more often than once a day though.

I'd also love to add that Children's Hospital was NO help to me either. One of the most prestigious hospitals in the world. They did not want to help us at all, I guess the illnesses that are unexplainable aren't teachable to their residents. We went to Marland for a cure to our mysterious illness.

I had done the swab for this over a year ago and had a positive test result. I did an RX nasal spray along with oral RX options to address the infection. The subsequent swab was negative. However, a year later, it was once again positive. Did you have your home tested for mold? If mold is an ongoing issue, then your health will not improve---you'll just keep getting sick.

Dr. Shoemaker in Pocomoke, Maryland treats lyme.

I live in New England. We closed up the fireplace because we were afraid there was mold growing in it (since it grows everywhere else)....it is never really used. I have the "dreaded" genotype for mold. 1% of population has it. And guess what, I married a man with the other gene that only 1% of the population has. Hence, all three of our kids have one form or another of the mold genes. We are lightning rods for mold. Crazy. But we are doing great considering where we were three years ago.

Ok, will post this publicly--sorry for the length: The lowest ERMI we could find when shopping for a new home was a 3. We decided to bite the bullet and move in since it was lower than the house we were moving out of and the lowest ERMI score we had found out the very many we had performed. When we moved in, it was a disaster. We all got sick all over again. We did move in the furniture from our old house. Even though we bleached it, cleaned it, vacuumed it. Bringing it in the new house made us all sick. So, we moved it all out of the house again. We sold all our belonging on craigs list, etc. We lived in the new house without any furniture and it still made us sick, although better than with the old furniture from our toxic house. I could write a novel on all the things we did and found, but I'll try to summarize as best I can: Removed all carpeting from the house, installed all hardwood or tile Cleaned out the heating/ducts unit (found a moldy peice of cardboard inside the unit which was probably the biggest culprit in the new house being initially unhealthy). After this experience, I suggest that if you have a forced hot air system in your home, open up the unit everywhere that you can and vacuum it out and inspect it for mold. We couldn't believe that the plumbers who installed the unit had left a piece of cardboard on the bottom (inside) of the unit. Condensation dripped on it and formed mold which blew throughout the entire house. Remove all flexible duct and install hard ducts. Flexible ducts can form condensation, hence mold. After that, our kids were still ill so we decided to shut off the unit and not use it. We bought electric heaters. This made a tremendous diffference. , we still have not turned on the air unit. I believe it is the most efficient delivery system of bioaerosals/toxins. I don't think I'll ever live in a house again with this type of heat. Remodeled all bathrooms, found small bits of mold in all of them. Remember, when you are sick from toxic mold, any little bit of mold will make you sick. You have to get rid of it all. My husband installed vanities that are off the floor with legs to prevent mold growth in case of leaks on floor. All holes in walls where plumbing comes out of are caulked or taped up. Toilets are caulked around the floor. We even caulked where the baseboard meets the floor in case there are leaks from shower, toilet, etc. Removed all ceiling fans in bathrooms. One of them had real bad mold above it because it was not installed properly. We buy the highest powered fans you can get. Don't install it if it can't suck a peice of tissue paper up from 2 feet or so below. The other thing we found with ceiling fans is that if you leave them running for too long, it can draw up the air from the basement. Usually this is a bad thing for mold patients, so don't leave the bathroom fans on for longer than you need. And also remember that if you don't tape up all the holes in the walls and around toilets, then when you have the fan on, you are also drawing up the air inside the walls and even inside the toilet. This won't make the normal person sick, but it will make a moldy person sick. Installed a new kitchen sink, in doing so, found mold around the old sink. Opened up the ice maker in the fridge to find a nice sludgy chunk of black mold. Removing this mold also made a huge difference. Since we don't use the air system we have not only shut the vents, but we put tape over them so that no air can flow freely through it into the house. To keep the kids rooms the safest, we made their doors air tight by putting a strip under their door. We have closed up the firepace and sealed it off to keep outside air out. We installed a fresh air ventilation system. We don't use it yet, but hope to some day. We do use window air conditioning units when the humidity gets too high. We even taped up recessed lights in the kitchen because they were located below the bathtub which I could see had leaks. I didn't remove the tape until the bathroom was remodeled. We bought leather furniture, easy to clean. Wrap all the mattresses (including the box spring) in plastic. Buy only cotton clothes and blankets. Never wool. Never anything you can't put in the washing machine. Always take shoes off. Keep any cardboard, plastic bags, etc. outside. Don't bring anything in the house without wiping it down first. Swiffer wipes are known to attract the spores and attach to them(it will minimize spreading them around) Don't ever bring anything from Home Depot, Lowes, etc and leave it in the house in the bags, or boxes it came in. Those stores have so much toxic mold in them. Installed a central vac system. This is the best way to clean your house. Make sure it vents to the outside. Have three dehumidifiers running in the basement constantly. The condensation is pumped outside and they run on timers so we don't have to worry about overflow. We do not use air purifiers. We stay away from fans. We typically don't like anything that picks up air and moves it around. It has just been my experience that it just makes us sicker. When we first moved into this house, I washed the blankets every other day. Now I do it about once a week. I have the kids take a shower every night to be as clean as possible during their restful, healing sleeping time. When you do buy new furniture, never let the furniture movers take the plastic off in your house, huge mistake. We use a product called "mold control" made by Scott's. This claims to be almost the same formula used to kill the anthrax spores at the NBC studios (just the consumer version). We spray this on all new furniture we buy or even some old things that we are nervous about bringn into the house. I think it is a great product that claims to neutralize mold spores. When you paint your house, treat the painting project like a remediation. don't do any construction without controlling the dust and airflow. I'm sure there is much more, and if my husband were answering this question he could probably write twice as much, we are vigilant about keeping mold out of our lives. All these things together have helped us move on in life. We are much, much healthier now. PM me anytime if you have questions. Good luck.

I have performed about 20 or so ERMI tests for housing. And, that does not include the ERMI testing I have had done at the school. We moved into a house with an ERMI of 3 (the best score we could get out of the 20 or so) and made it less than 1 over the course of the first year living there. It was extremely difficult. I will PM you with the radical steps we had to take to make the new house livable.

Thought I'd add that maybe you could put fresh linens on his bed just before he goes to sleep (not in the AM) and see if he experiences less symptoms (at least less creepy crawlies). The shooting pain sensation is a typrical mold illness symptom (maybe also a PANDAS) caused from low Melonocyte Stimulating Hormone which is a regulating hormone which controls many things including sleep and your body's ability to withstand pain.

I have had that symptom as an adult. My children's skin also gets itchy, but the pains they experience don't sound as severe. Although, my son used to wake up frequently with "growing pains" in his shins. I would have to massage his shins till he fell back to sleep. I am extremely sensitive to biotoxins (in particular mold toxins) and believe I now also suffer from multiple chemical sensitivity. I will itch severely and experience creepy crawlies in many instances. For example, if I put on some clothes that haven't been freshly washed, if I lie in a bed with linens that have "dust" on them, when I first sit on a couch and disrupt the dust on it, if I just vacuumed the house and stirred up the dust in the house, there are everyday occasions where I experience these creepy crawlies.

Was it from the Jewish lab? Quest? thx Just looked it up...Quest Diagnostics, full name of test on lab result is: NJC-C4a, C4a. The normal range is 0-2830.

who is treating your son? All my children are on cholestyramine too. What are your son's symptoms?

I did just get some c4a results back for some members of my family (all mold illness sufferers)--done by Shoemaker. The upper limit of the range for c4a is somewhere around 2800, not 960. Maybe the wrong C4a test was run and that is why it is coming back normal?

I know the feeling well. Another option to look into is whether mold/environmental toxins are your trigger for illness. It turned out to be the case for all my kids. They could have all been dx lyme, pandas, tourettes, ADD, OCD, etc. And, they did have a little bit of all of that, but it was caused from their toxic mold exposure. After removing exposure, treating their illness, they are a lot better and I finally have the feeling that something I am doing is making my children heal. It has been a very slow process (2 years in the making), but along the way I felt we were gaining 2 steps forward for every one step back. Recently, the gains are more like 5 steps forward, 1 step back. I feel positive that they may actually live a normal life someday. Look into mold--it is easier and cheaper to rule it out--you have control over your environment. Maybe there is mold at school, maybe in your duct work, maybe your basement, it is a nasty, nasty cause of illness that many people don't take serious. Check out this website for more information: http://www.survivingmold.com/

Hi, I'm pretty sure I am realizing that my youngest DD7 has an intolerance to lactose and that it is causing her to have tics and behavioral issues. In particular, it makes her have to blow the "crunchies" in her ear out, and she tics by licking her finger and touching her nose. It also makes her hyper and what I call a little bit "crazed" in her behavior. Does anyone else notice that lactose/dairy causes symptoms like this? Can you share your experiences and/or your remedies to overcome? I am still not sure of my suspicion, but we have trouble with artificial flavors/colors and gluten. Wondering if there is anything she can eat! Thanks

Oh yes, mold is on my radar, and I know I have to investigate that sooner than later. My house is 1800s and has a stone foundation, which means water runs right through the dirt floor "basement". Half the plumbing runs to a sink hole in the dirt basement. Yup, mold issues guaranteed. The one thing that doesn't point to mold is that "this" (PANDAS, lyme, bart, whatever) all started for my PANDAS DS at our previous home which was all hardwood floors, air filtration system, etc. The younger 2 boys only got sick after our first summer here, and that summer our pets kept getting ticks. I never saw any on the kids, but one cat got sick and died, and our young dog turned "old" overnight. I wish I had saved and tested the ticks, but I didn't know ANYTHING about lyme back then in 2007. I just picked them off and killed them in rubbing alcohol. I'm sure my ancient moldy house can't be helping the situation at all, but I do think my kids got exposed to lyme here. We moved from the city and now run around in long grass and through the deer trails in our back bush. We didn't know anything about lyme. Ugh. The younger 2 boys have almost identical western blot bands. DS8's bands are totally different, but he's been sick since birth so probably congenital. Looking back, I'm sure I've had it since I was 12, but again, knew nothing about lyme, so I had no clue. What are the blood tests for mold? My kids have to have monthly blood draws with the high-dose antibiotics. Maybe I can get the doc to run the mold tests next month. This website has TONS of information on mold, blood tests, VCS vision test as a screening for possible mold illness. Also, this doctor treats lyme as well as mold illness which are virtually identical illnesses in their symptoms. So much info on here that is explained much better than I ever could. BUT...basically my entire family became ill in our toxic home. All three kids presented with tics (motor and vocal), floaters in vision, headaches, memory loss, chronic sinus, viral, and ear infections, frequent urination, tinnitus, OCD, ADHD, sleep apnea, I was misdiagnosed with MS, chronic fatigue, fibromyalgia, lyme, etc (I could go on and on with the list of symptoms)....then we found mold and the symptom roster has decreased by a ton (kids haven't been to doc except for well visit in 2 years!) since we moved out of moldy house. Check out the website, if you have mold in your home it is definately compounding your health issues and should be addressed as you'll never get well with mold in your home. http://www.survivingmold.com/