posted
The symptoms of lyme and mold sickness are basically the same. There could be people on this board, those with only clinical diagnosis of lyme disease, who may actually have undiagnosed mold sickness! Please take the time to read this thread and become aware of your possible risks.
If you live in a humid climate or where humidity levels reach 50-60% and you are sick, you MUST read this thread.
I have copied this over from another thread to this one in hopes of reaching more people who may benefit from it or can constructively contribute information to help others. ================================================
Mold is a serious issue, especially specific strains known to be caused by water damage. However, certain molds, like the very dangerous stachybotrys black toxic mold, can live with just moisture from the air. It does not need a high content moisture source, and it is the most toxic mold with high health risk factors.
Aspergillus and Penicillium are among the high health risk factor molds, but they need a moisture source to live on (usually water damage).
It can be difficult to get clear and credible information about mold. Like lyme disease, no 2 experts seem to say the same thing, the CDC guidelines are not what they need to be, and most family practice doctors are unaware and don't know how to diagnose mold sickness. Medical school covers about 2 hours on mold risks and health factors....sound familiar?
In otherwords our risks of getting mold sickness from our living and/or work environment are probably far greater than our risks of getting tick/critter bit.
The only way to know is to first test your body to see if your body has developed antibodies in response mold exposure. The blood test is through the Esoterix mold test through LabCorp.
If you have high antibody reaction on the test, it validates you have had exposure to those specific species of mold. The lab test tells you exactly what molds, but of course is only testing against the strains of mold your doctor asks to be tested. There are thousands of strains of molds, not all are dangerous. So, you need a mold literate doctor to request the right tests.
Next, you need to determine WHERE the level of mold exposure is coming from. It could be your living environment, your workplace, your car (especially if you have long commute daily and your car is not garaged and is out in the elements where you could have some water intrusion). One key to look for is SMELL. Mold usually has a pungent smell. However, after a period of time mold can stop to smell.
In order to do an inital smell assessment, it is recommended that you stay away from your home for a few days and allow your nose to acclimate to an unexposed environment. When you return to your home with a "new nose" it will more easily detect any unusual oders that have previously become accustomed to and perhaps no longer even notice.
You also want to do a visual inspection of attic, crawl space, basement, all rooms, particularly any rooms with a water source (bathrooms and kitchen).
If you have a frost free freezer, you will want to inspect the drip pan under the refrigerator. We found quite a bit of mold in ours. At the time we didn't know better and immediately cleaned it. Now, I know that prior to cleaning it that we should have done a surface swab or tape lift test to have the mold tested to see what species of mold it was.
You also want to inspect your hot water heater area, see if there are any leaks. We had a slow leak where there were no visible signs of leakage without looking into the hot water closet. How many of us regularly inspect that area? You can protect against risks if you ensure there is "catch pan" under the hot water heater. Any hardware store sells them near the hot water heaters.
You will also want to inspect around your air conditioner, check the drain tube to ensure it isn't clogged. Mold remediators recommend that put bleach through it every 3-4 months. We never knew that.
Check all areas of your house where there are "transition points". Meaning where the ceiling meets the wall; the wall meets the floor; around all windows; transition points in exterior structure walls as well as inside walls, including roof lines.
There are a variety of ways to mold test your environmental exposures. The are pros and cons to each, costs vary greatly, and again no 2 experts agree and the government guidance standards are not what they need to be.
Consequently, the confusion causes people to just call in what they think is a professional mold remediator who sometimes is only a person who paid for $100 online course and was given a certificate of completion. With that and a $500 of equipment, "I are a mold remediator and am here to help you".
The horror stories across the country are frighening. People have refinanced their homes, entrusted remediation to an unqualified person who was basically clueless how to properly protect the home against cross contamination risks.
A botched remediation process can end up spreading the mold contamination throughout the entire household, rendering the property unlivable and unsellable. A homeowner's nightmare.
We started our mold education process with buying several books and DVDs written by doctors, mold remediators, and a mold remediation training course. For an additional $50 hey even I could now get a certificate from Allstate Home Owner's Insurance saying I am a certified mold inspector. How scary is that???
Who wouldn't trust an official Allstate Home Insurance certification to not be all that you think it might be, right?
I do NOT consider myself to even being close to being a qualified mold inspector.
But, I am a better educated person about dealing with mold as a result. I will hopefully be able to better protect my family from harm that I was previously unaware existed.
I am sharing information that I am learning as I truly believe that when share information that the universe delivers more answers to you because you are helping mankind with what you receive.
First, if you suspect you might have a mold problem, I would advise that you NOT immediately contact your home insurance. Not until you first educate yourself about the risk in doing so. Then, make your decision.
The following is what we learned from a mold book written by a former insurance agent.
Insurance companies have had to pay out so much in mold claims over the last decade they now deny and litigate almost all claims.
The onslaught of mold claims has resulted in insurance companies developing exclusion addendums to home owner policies. For most, if you haven't purchased a separate mold rider coverage, insurance will be denied and have to be litigated. If you had water damage that wasn't repaired within 24-48 hrs. it will be litigated as homeowner contributory neglicence for not having done regular home inspection and repairs as needed. They have their whole defense system in place waiting for your mold claim to arrive, be denied, and then raise your rates.
Most importantly regarding insurance claims, you should know that very strict practices have been put in place where IF you have a mold claim, your insurance can be cancelled. With some companies even an inquiry call about mold can flag you as a potential a high risk homeowner. High risk homeowners, like high risk drivers, go into a insurance check data bank.
Insurance from thereon out, if you can get it, will be at a high risk premium.
What I have learned in my own situation and experience is that it is an issue where there has been substantial fear mongering in a very unregulated industry. And, how mold is viewed and handled can vary vastly different state to state.
For example, my husband and I recently had a phone consultation with Mary Beth Short-Ray,D.O., a medical doctor in Florida. She is the author of Surviving Black Toxic Mold Syndrome and personally recovered herself from long term mold sickness.
She went through years and thousands of dollars in professional home remediation. She wrote the book to help others learn about the dangers of mold and what to do. Her information is freely available on her website online where she lists mold sickness symptoms (same as lyme disease!).
Mold thrives in humidity as it is a moisture source. Dr. Short-Ray recently relocated to a large town in FLA where she says the all lease agreements have an MOLD Awareness & Prevention Addendum. It is a basic help guide warning renters about the risks of mold and step by step what they can and should do as tennants to keep risks down.
All states where the humidity can get over 60%(high risk mold areas)should have such a requirement and guide to renters/homeowners. They don't.
It is up the public to take personal responsibility to know and manage your own family's risk factors. Don't wait on the government to do it for you. It will be too late. How many years have they known about lyme and not adopted proper standards or trained doctors? The lyme crisis has existed for about 3 decades. The mold crisis has existed for about 2 decade.
So, you have to be proactive and learn about it for yourself. Hopefully not in response to a personal crisis situation as my husband and I are having to go through right now.
The only state that I am aware that has an active public awareness campaign to make its residents mold literate is Florida. There may be others.
Florida, and its residents, learned hard lessons through the succession of many devastating hurricanes. Horrors of mold stories resulted with water damaged homes. The next lesson learned was hey, even without hurricanes Fla residents are at risk because they learned that just the high moisture in the air, humidity, presents mold risks.
So, they developed a public campaign awareness with MOLD ADDENDUMs to leases. Here is the Florida Property Rental Lease Mold Addendum I found online:
Everyone could educate themselves by taking a minute to read through this document. It is especially important if you live in a part of the country where the humidity factor reaches 60%; a high risk factor.
The energy efficiency standards that began in the 1970s have indeed resulted in more airtight homes, but it has also resulted in substantially increased mold problems as tightly sealed structures are not able to expand and breathe.
There is a mold crisis in our country happening in homes, especially those built in the 1970s and later.
The FLA Mold Addendum document is a couple of pages, easy bullet format to read. They basically give practical advise to ensure tenants are aware of what they can do to cut down on daily indoor mold risk factors. An ounce of prevention is worth a pound of cure. Please read it.
Dr. Short-Ray was thrilled Florida is so proactively advanced in this area of mold prevention.
Dr. Short-Ray recovered herself from mold sickness. She ultimately had to move out of her house due to mold issues. She spent thousands of dollars professionally remediating, and the problem kept coming back. She wrote the book, Surving Black Toxic Mold Symdrome, to help the public understand about mold risks and how to protect yourself against in an unregulated industry. She is still paying off debt for repairs in house she can't even live in.
She was terrified about looking for a new place to live where one does not know if there is a water damage history of the structure. Knowing that Florida has an active campaign about mold awareness helped her in making decisions about her new living environment.
I wonder how many among us have mold problems and may not even know about it?
What several doctors have told me is that if mold is a factor in your illness, it must be treated first, before lyme. I don't yet fully understand all of why that is, but 3 doctors have said it.
If I understand it correctly part of the reason is that an underlying mold problem will deregulate progress of lyme treatment. Perhaps treating both simultaneously might overload the detox system. That would be a particular risk factor for those who may have a methylation detox pathway block, which I do. Maybe those without the block could treat simultaneously? I don't know. Just posing questions for others to consider in trying to find the pieces of the puzzle to your illness.
Some LLMDs know about the mold factor risks; some don't.
There is just so much about all the nuances of chronic illness that it seems we have to know or learn for ourselves. Thank goodness for forums like this that gives us the ability to share information and learn from one another, hopefully in a constructive healing way. ================================================== Emla999/Lyme contributed:
Jam338, I completely agree with you about the health dangers that being exposed to toxic mold and mold mycotoxins can cause. Illnesses caused by indoor molds and mycotoxins are probably more common than people realize.
Exposure to toxic mold and mold mycotoxins can also come from your diet.
Poisons of the Past: Molds, Epidemics, and History by Professor Mary Kilbourne Matossian
posted
Emla999/Lyme, thanks for link on more mold information. I have read your other mold posts with great interest, especially now that I know this is a problem for me. You definitely have insights about the mold issue that we can all learn from. I have SO much to learn and am overwhelmed with it all. I have a question for you or anybody who can answer it.
Are mycotoxins and biotoxins the same thing? If not, how are they different? What do we need to know about that?
In dealing with the 3 different doctors I have heard both terms used. Does one related to mold and the other relate to lyme (I have both)...or are they synonymous and used interchangeably? Just trying to delineate the distinctions.
Dr. Short-Ray, the medical doctor in Florida that I spoke with on the phone, gave me a lot of good information. I haven't yet checked all this out, but wanted to go ahead and post the information since a few people have PM'd and emailed me asking that I please post more specifics about her treatment recommendations.
I think there is more on the tape from my phone consult with her, but here are a few notes of things I scribbled down. I was having a very difficult day so didn't write much as I knew I had the tape for review later.
Maybe others, if interested, can help research this list further and we can post and share information we learn to help each other.
Ok, here is my partial list:
-ERMI Dust Sample Testing $360
-Instant Mold Test Pen ($15)
-BENEFACT (thyme oil)(mold structural treatment)
-Structural Pasteurization Process (mold structural treatment) (baking house process at 140-200 degrees to kill mold)
-Modiflan (brown seaweed, exc. for detoxing and good option for those who can't tolerate CSM)
-PK Protocol @BodyBio.com
-Book: Biotoxin Illness
-She also gave me a website which I failed to write down but have the phone consult on tape so will check and post it later. She said to go to the website and locate a holistic allergist in my area. She said find someone who is environmental mold literate and inquire about their ability to give "neutralization provokation allergy shots". If I understood it correctly it is something that neutralizes the body's reaction to mold (probably over time, a succession of injections...just guessing). She said a few environmental doctors around the country are reporting really good results with it. ================================================
Emla999 Replied:
Jam338, thanks for the complement.
To answer your question on the difference between biotoxins and mycotoxins.
Essentially, Biotoxins are a class of toxins that includes a broad range of toxic substances.
For example, Mycotoxins are considered to be a biotoxin and therefore mycotoxins are in the biotoxin family.
Another example of a biotoxin would be phycotoxins from phytoplankton.
Mycotoxins are just one out of several toxic substances that are classed as a Biotoxin.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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I talked with Esoterix lab staff in Tennesee. The mold lab panel is lab test #46.245. The diagnostic code is 780.79. It tests for 14 species of mold. If anyone wants a faxed list from the lab of the specific molds please PM me.
Through discussions on another thread Seekhelp has enlightened us that lab prices vary among practitioners. Something some of us didn't know. Thank you Seekhelp for making us aware that practioners contract with labs for lab prices, and then the practioner decides what the lab price will be through them, with the balance going into the practitioner's pocket.
CD57 and I compared lab prices. This test through her doctor was $120 and tests 14 molds. Through my practitioner (a naturopath), the test was $600 and tests 10 molds.
Unfortunately my insurance will cover none of it because it was not ordered by a medical doctor.
CD57's test is through a medical doctor and should be insurance eligible. Just so you know those particulars in financial navigation to get this test panel done. Hope this information helps.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Thanks for this thread, jam.
Posts: 861 | From USA | Registered: Dec 2008
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Jam, thank you for posting this valuable information and these links.
I live in a dry western state, and still suffered for years from mold illness without knowing it. I had a very bad case of lyme and coinfections at the same time.
I tried penicillin injections for a month for lyme treatment, with remarkable improvement. Then Bam! Sicker than before with fungal infections of all kinds.
I understand treating mold illness before lyme, because mold compromises the immune system badly, increases allergies, and causes rapid problems when antibiotics are used.
While many lyme and mold symptoms are similar due to the similarities in biotoxins, symptoms I believe for me have been mold rather than lyme-related are the following:
Barking cough and lung congestion Persistent sores in the nose Diflucan-resistant vaginitis and gas Blackened cracked feet
A seaweed product called Alaria also seems to be good for eliminating mycotoxins from the body.
I have found that very high levels of ozone for extended time is extremely effective for clearing out mold and mycotoxin residue from the home after obvious mold has been carefully removed. (We used a 16,000 mg/hr machine for 30 hours, while vacating premesis.)
A Biopure product called Matrix Microbes is available for spraying throughout the home to reduce mold risk. They are probiotics for the house.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Dr. Short-Ray's book has a mold/biotoxin diet, basically things to avoid. I can't remember if the diet is on her website, but probably is.
It is a 2-phase Antifungal/Low Mycotoxin/low carbohydrate diet. Phase One is 1 month plus CSM. Then, she recommends another month with an antifungal supplement or antifungal drug.
She recommended eating good foods with healthier fats. She said lots of avocados and coconuts because of their high fat content. The high fat will not only keep you feeling fuller on a low carb diet, but she said the real goal is to replace stored body fat (full of biotoxin/mycotoxin stuff) with good fresh fat.
The PK Protocol Dr. Short-Ray recommended (above post) was described as a sort of "Oil Change" or "Oil Exchange" protocol to help the patient eliminate stored fat and detox mycotoxin/biotoxin stuff.
That reminds of another thing she said about one of her other recommendations in the above post.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Jam, I'm still working on an email to you (my cognitive symptoms are awful though-I know you know how it is!). I wanted to let you know though that yesterday, I received my very first definite diagnosis of mold poisoning. The significant findings in the Esoterix blood work combined with my history and how severely debilitated I am completely support the diagnosis.
I also wanted to tell you that I admire you. I admire your openness, honesty, and willingness to help others, especially while you are still ill.
Since this is all new to me, I have oodles of questions, but my biggest ones are about mold in my living environment. Is there a website that lists the most mold-affected cities in the U.S.? Is there a website that lists mold-free or low mold housing, cities, towns or neighborhoods? I know houses can be tested and mold issues can be remedied, but my whole family is in upheaval right now and it looks like my mom is moving into a new house and my dad is moving into a new house, so it'd be great to start fresh in an environment that is known to be free of mold issues.
Thank you, again, for providing all of this information for everyone. I think this is the missing piece to many people's complicated health puzzles...
Posts: 710 | From West Coast | Registered: May 2008
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
LittleLymie19,
I just saw a map yesterday that listed the areas each state that were more prone to mold/fungi growth.But for the life of me I can't remember where I saw that map.I'll blame that on brain fog.
But in general outdoor mold grows much less in hot dry climates than it does in more humid or rainy climates.
But when it comes to indoor mold it doesn't really matter which state a person lives in because all homes have indoor plumbing. So,there is always the possibility of an indoor water leak.
And in each state there can always be the potential of some faulty construction work which could lead to water leaks. Or building materials that were contaminated with toxic mold could have been used in the construction of the home.
So, regardless of where you live you can still be exposed to toxic mold and mycotoxins.
But if you are someone that is allergic or sensitive to outdoor outdoor molds then living in a dry, sunny and hot climate would be better for your health.
posted
LittleLymie19, you are quite welcome honey. I look forward to hearing from you. I will PM you with my private email address.
I am so glad that you are finding significant pieces to the root causes of your illness. I know how scary it is. But, it is a beginning in the journey to improved health.
I am still learning myself about mold, but will try to help you with any thing that I know about or give you my honest thoughts about something to help you.
As far as most mold-affected cities in the U.S., I don't know if there is a website. I can give you my best guesses. Most (not all) mold needs moisture to survive. So, any areas with high humidity are higher risk.
To me, that means all of the east coast (especially southeast) and probably most of the midwest. The driest climates are going to be the west coast(particularly the southwest).
I see you are in California,so you are probably in one of the best areas.
New houses are likely to be mold safer as they have not yet likely sustained water damage problems, but they are not without their problems or future risks.
Builders cut corners that present risks. Ones you don't see. For example, if the house was built in a rainy season, and the builder did not allow the frame lumber to dry out for at least 2 weeks prior to sealing the house, it can be breeding ground for mold to start before the first water damage event ever happens.
Newer houses are built more energy efficient, which is good, but that also means those type houses are more at risk for growing mold when there is water intrusion. The houses can't breathe. So you want to make sure that you have adequate roof ventilation. You can install after purchase roof ventilation fans. It could be well worth the cost of doing it in order to avoid later mold remediation costs which are horrendous.
All of my doctors have recommended installation of a negative air pressure unit. We are looking into that as a safeguard in case there is any dangerous mold spores that get missed in the remediation process.
For those who can't do mold remediation, the negative air pressure system is possible option.
The negative air exchanger unit has a dial that allows you to adjust the positive/negative air flow in your house. How it functionally helps regarding mold containment is changing the pressure changes the air flow from the walls into your house.
It reverses the air flow pressure back into the wall and stops the seepage of spores through the cracks, electrical outlets, and at the room transition joints (ceiling to walls....walls to floor.
There is a picture of one on Dr. Short-Ray's website, the system she recommends is linked through her website. I can't remember the name of the unit right now or how much it was. I think it was less than $2,000. Not cheap, but I can tell you that mold remediation costs are much more. They are huge. This unit is a fraction of what mold remediation cost.
A frequent gathering place for mold comes from the crawl space below the house through the floor transition joint. That is why you need to pull back baseboard moulding so that you can thoroughly inspect that area.
My doctors have said the sickest lyme patients are the ones who also have a mold problem. According to Ritchie Shoemaker, M.D., 25% of the population have the mold susceptibility gene.
The only way to know if you have that problem is to test. In my opinion, everyone with lyme disease and insurance to cover testing costs, would be wise to test and know your risks.
Be vigilant about knowing what things to regularly inspect in your house and do it regularly. For prevention inspections, you can do those yourself if you know what areas to look and what to look for. We didn't. I am paying the price for that now.
One of my doctors says that I would have at least 50% less symptoms/disabilty if I did not have the mold exposure problem. That is huge. That should be a motivational warning to others to please take preventative steps now before you risk getting like this.
LittleLymie19, I would say make sure that your mom and dad are well aware about mold risks. Don't assume because they are adults and own a home that they know. They likely don't. We sure didn't.
Print things out from mold websites and ask them to please read so that they don't become sick themselves. If you have the mold susceptibility gene, it came from one of your parents. They likely don't even know it. Maybe ask them to review Dr.Short-Ray's website or print out this thread for them.
Mold prevention means protect against water damage or water intrusion of any type whether it is roof leaks, plumbing, or a toilet overflowing.
If a water intrusion event happens, make sure the repairs are done within 24-48 hours. That is the ONE thing that all mold experts agree on!! That, and make sure the area is completely dried out as soon as possible. Use little portable heater(s) and/or simple inexpensive seasonal box fans to dry out and keep the air circulating until the area entirely dry. Walmart or any big box store even carries the "seasonal box fans" in the hardware section all year long, not just summer. Handymen use them in home repair projects all the time whether for drying paint or pulling fumes out through a window or pulling fresh air into the indoors.
Another thing I have learned from all these books is never shampoo carpets in the winter! How many of us have shampooed carpets for Thanksgiving or Christmas holiday gatherings? In winter, the air moisture content is higher and it takes much longer to entirely dry out carpets. Mold loves carpets. Nature's force of gravity is that mold spores will accumulate in dust particles and then fall to the floor (carpet).
If you must shampoo carpets in winter, have it professionally done with a strong water extraction system or steam cleaned.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Bejoy, I am sorry you are going through this along with Littlelymie19, me, and anyone else suffering with horrid lyme/mold disease factor. It is truly a horror story for me.
Thanks for sharing the info on the Alaria, ozone, and Biopure. I will definitely check those out.
I wonder if Alaria is the same or similar to the Modiflan product? Anyone know? Both are seaweed products, wonder if they do the same things?
One other thing, before I forget, I think I forgot to mention about the Citrisafe candle, http://www.citrisafecertified.com. I have no idea if it works or not, but it was recommended by one of my doctors (LLMD) as an organic alternative to kill mold. It does NOT replace remediation. Even when you kill mold you still have to remove it. The candle is not cheap though ($90). I think it may be a one room treatment thing, not sure how many square ft that one candle reaches. It probably says on the website.
posted
emla999, oh gosh that map is EXACTLY what I'm looking for!! I completely understand the whole "lyme brain" thing though. Are there certain sites about mold exposure that you frequently go to that may have the map you're thinking of?
My own lymed brain is trying to google but I can't find anything I'm looking for...
Thanks for sharing Posts: 710 | From West Coast | Registered: May 2008
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Alginates which was not mentioned on the website.. but modifilin has it as well. I bet they both have the needed "chemicals". Hard to find info on this one.
posted
I LOVE Benefect... where do you get yours? I get mine from Tropical Traditions. I had no idea it was also good for mold. It smells great and is hospital grade for cleaning. Expensive. I joined a local co-op to get it.
According to the article above mold mycotoxins can increase the permeability of bacteria through the intestinal wall. This allows more bacteria to enter the bloodstream.
I wonder if mold mycotoxins allow other substances besides bacteria to cross the intestinal wall more easily?????
Posts: 1223 | From U.S.A | Registered: Jul 2007
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posted
Emla999/Lyme, very interesting about the cereal link, thanks for posting it. I think this might be an important thing about the cereal.
Two doctors, both working with mold sickness patients, have said no cereal. I haven't yet asked why, but had assumed it was probably because most cereals high a high sugar content.
With the yeast problems that happens with both lyme and mold, we don't need more sugar to feed the yeast problem.
However, after reading the link posted about cereal, I am now wondering if it goes beyond the sugar issue.
I will recheck Dr. Short-Ray's book and see if she says more and post if there is more info.
I had selected a high fiber/very low sugar cereal (equivalent to grapenuts). Thought I was safe with that. Now I need to rethink that again.
I don't have cereal for breakfast, instead I use it as afternoon fiber snack along with a berry smoothie.
One of my doctors suggests that in the mornings I first take serrepeptase, then 30 min later my husband makes a spinach/green clay cocktail smoothie thing; 30 min later I have to eat something with protein/fat. That process is supposed to pull the mycotoxins out of the intestines.
I am happy to share the spinach/clay smoothie recipe with anyone who might want it. It isn't in my computer though. It was faxed to me by the doctor. I am happy to fax it to anyone who wants it. If interested, PM me with a fax number to send.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Yes, we can be exposed to mold mycotoxins via our food supply. This is discussed in the book, "The Fungus Link".
And apparently, mycotoxins in grains have become quite the problem lately. In Europe, they are really tightening upon the amount of mycotoxins allowed in grains.
posted
Emla999, it is a french food grade clay, Argiletz green clay. There is a couple of websites where it is sold online, but I have not purchased through them.
I am still on my first box which was purchased through my doctor's office. It comes in a 1 pound box, and you use 1 tsp, so it lasts quite awhile. My doctor said to drink the clay smoothie twice a day.
There are about 3 different variations as to recipes I was given, and the doctor checked which one I was to use. But I think you could likely put the clay into any green smoothie blend recipe.
Dr. Oz has the following green smoothie drink recommended in his book. Sometimes hubby uses this one as it has more good things in. But I need to specifically ask my doctor if there is anything in it that might be counter indicated with the Argiletz clay:
Dr. Oz (from Oprah fame)Green Drink Recipe:
* 2 apples, cored * 2 big handfuls of spinach * 1/2 cup of chopped parsley * 1 celery stick * 1 thumb length of ginger root, peeled * 1 lemon - leave some peel for zest * 1 medium cucumber
Place ingredients in a blender, add a handful of ice cubes and puree quickly for one minute. Makes two glasses of Dr. Oz's green drink.
The green drink has a strong taste and if you are used to drinking soda or sweet tea, the taste will take some getting used to.
Dr. Oz suggests adding other items at first to sweeten the green drink to your taste. Perhaps honey or stevia, but those with candida issues should try to avoid adding sweetners.
Another food precaution for mold, along with the problem with grains is nuts. Here is the problem. Foods that are kept in storage grain bins for a long time (rice, corn, nuts, etc) acquire mold. Not mold that you can see, but mold nonetheless. Not a problem for most people, but if you are in the 25% population group with genetic mold susceptibility problem, it is an issue! A big one.
So, here is what my doctors say do for prevention. First, avoid eating those things if you can, except for nuts. The fats in nuts are really good "oil exchangers" for those of us with mold, assuming you don't have nut allergies of course. But, if you are a grain or nut lover, fear not, you don't have to swear it off for life. You just have to take precautions about it.
I was told to rinse/presoak grains in Vitamin C crystals and water. I'll ask hubby for how long and come back and edit this post later. He isn't here at the moment.
Also, all nuts, even preroasted ones, must be rinsed w/water and soaked in the refrigerator for 8-12 hours. I assume the Vitamin C crystals added to it might help here too.
Then, dry out/roast the nuts in an oven at minimum of 100 degrees. It kills any residual mold residue. The problem is the book doesn't say for how long in the oven, and I forgot to ask her in her my phone consult. So, I would say at least long enough to eliminate all the moisture, and then just roast to taste preference.
It is kind of a similar process to the "house baking" concept to kill mold that I mentioned in one of the above posts.
One of the doctors who wrote a mold book (DrS, LLMD in Fla) says in his book that mold patients should microwave for 30-60 seconds any books that you buy. All books are kept in damp moldy wherehouses during production and prior to shipping them (and mold spores) into your home. I would have NEVER thought about that being a risk factor, but it makes perfect sense that it would be.
Again, for 75% of the population you don't have to worry about this stuff. But for 25% of us who do have this genetic mold susceptibility factor, it is a HUGE issue and a possible factor as to why we don't respond to or get maximum benefit from treatments.
I am wondering if you could just put the nuts in the microwave and achieve the same thing? I think my doctor may be one who hates for chronic illness patients to use the microwave for any food.
Not sure why, but I have heard Dr. Paul Cheney say the same thing in his lecture presentations...no microwave foods. He says why, I just can't remember.
My brain is like sieve these days, and I can't retain things for long. It is a real problem with trying to chart your own course and manage your own health care:(
There are other dietary recommendations from Dr. Short-Ray's book that just aren't coming to mind right now. I'll skim it later and see if there are short things that I could post on.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bettyg
Unregistered
posted
cd57,
copy the link here ok....
go to top of forum page, and click on lou b's name. now send him a PM and include the link in message.
ask him to consider adding this as a sticky above, and WHY you feel it needs to be there; BE BRIEF; he's SWAMPED working with 4 charities which includes lymenet.
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Jam338, thanks for the info about Argiletz green clay.
And that was very interesting to hear that microwaving our books could kill the fungi that's on them. I had never heard of that before. Its good to know that we have a way to kill toxic fungi on some of our belongings.
I had heard about the process of soaking nuts, seeds and grains to kill toxic mold and to eliminate mycotoxins before. But I didn't know that Vitamin C crystals should be added to the soaking water.
Thanks for the tips!!!!!
Posts: 1223 | From U.S.A | Registered: Jul 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Professor Dr. Homero Fonseca's website about mold mycotoxins.
I wish my Spanish was better!
Posts: 1223 | From U.S.A | Registered: Jul 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Does anyone know of lyme symptoms that are NOT mold symptoms at all?
Just really curious. I'm starting to wonder if my apartment has mold issues.... I didn't get really sick until I moved to this apartment and three months later was VERY ill.
My husband and I went to Home Depot this morning and got the do-it-yourself mold kits. We got two. Now we just have to figure out how to use these things...
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Ok, something else before it leaves my poor lyme/mold brain and I don't remember to post it.
This is a huge thing for each homeowner with dangerous toxic mold problem to decide about. To apply a biocidal fungicide mold protection agent or not? The typical product used by mold remediators is by Fosters. They have a website that fully describes their products and a link with a name and a toll free phone number for the regional representative in your part of the US. Of course they are going to recommend their products. These are the products that were EPA recommended and used in Katrina and I think in Florida (hurricanes)and other parts of country (tornados and floods)that have made the news with water damage disasters.
I don't yet know the answer to this one but just putting the issues on this thread for awareness. Maybe others can post more to help improve our undersanding about the controversial biocidal fungide dilemma.
This post is to make you aware of warnings about biocidal fungicide products that I have received from mold lierate physicians who specialize in treating mold sickness patients.
That is contradictory to every mold guidance I have read or watched to date. They all say it is critical to use a biocidal sealing agent on mold affected wood before replacing the sheetrock and sealing up the wall.
This is a very difficult and serious potentially severe consequence consideration, so please evaluate it carefully. Do your own homework.
Know and evaluate your family's risk, seek guidance with informed and trustworthy professionals, be aware that it is a very unregulated industry, and that there are people on all sides of you ready to put their hands in your pockets with fear mongering tactics about mold.
And, there are very well-intended but ill-informed professionals (including doctors and contractors) who will make what they think is the best recommendation based on what they have read, trained on, or been told. That doesn't mean they are right or wrong.
It means you have to decide what you think is right in your situation. Know and weigh the risks and then decide for yourself and your family.
Ok, so all that said, as previously posted, we have bought many books and instructional DVDs on mold remediation. That, in part, along with the guidances of my doctors, and research I have tried to do online, is the source of my limited insights about mold and mold remediation issues.
Because of my mold/lyme brain problems I can't "read a book". Many of you struggle with the same problem so I know some of you at least understand. I have to "skim-read" sections at the time, take a rest break to let my brain settle and sometimes do several "re-reads" of the section, especially with technical information.
That is the same process I have to do with reading and writing, whether it is simple emails or posts on this board. It takes a very long time for me to do cogntive function tasks.
I am explaining this in order to highlight that in the process I may miss or jumble information. So, if something sounds incongruent, please point it out. I don't want to inadvertently mislead anyone. The point of this thread is to share information as much as possible and to get information out to you about your mold risks.
Ok, so back to this issue, sorry my brain is a bit scrambly today, the mold literate doctors have strongly warned us against using the biocidal fungicide products.
My mold literate doctors seem to highly regard Ritchie Shoemaker, M.D. author of the book, Mold Warriors. All have recommended his book, along with others.
Dr. Shoemaker has the only published book that I am aware that warns about risks using biocidal fungicide agents. Most published literature, including the CDC recommendations, recommends it. That contradiction probably doesn't surprise lyme patients.
Most of the published literature states that biocidal fungicide agents retard and protect against the growth of mold. However, mold literate researchers working on the leading edge of mold evaluation are reporting that mold (like lyme) is a survivalist. When it is put under attack, it will find a way to mutate and transform itself into a harder to kill hybrid of itself.
So, if this is true, and if we use a biocidal fungicide; and, if we don't get ALL the deadly mold spores out; and, if we use the biocidal products; and, if mold resurrects itself into a harder to kill form, we may potentially create more of a problem than we had to start with. How scary is that???
They are saying that it could mutate into a mold form that is so hard to kill that they feel it may actually be better to not use a biocidal fungicide product at all.
Some leading edge mold literate researchers are actually warning that laboratory studies have shown that mold figures out how to transform the substance that is put in paint to be a mold retardant into an actual food source for its survival! I have not seen or read the studies, just posting what my doctor said.
Please note that I have intentionally not described the mold retardant in paint as a biocidal fungicide agent because I don't know if it technically is a biocidal funcgicide or a hybrid thereof.
If that is true, then when we apply mold retardant paint, we may actually be establishing a food source for mold to grow and survive!!
But, who knows if that is true? I do not have the answer that we need to know.
Unfortunately, the published literature has not yet caught up to these new research relevations.
Like the field of lyme disease, so many research industry specialists are debating amongst themselves about it. That is inherent in the research process. However, there is always a capitol venturist component in everything. Some laboratories are racing to find next patentable product or process which risks skewing perceptions and reporting, and usually leaves us without definitive answers.
It is really hard for the lyme/mold brain challenged patient to navigate guidance documents, weigh your risks, and decide what avenue best manages the risks for you and your family.
Amidst all the controversy (like lyme disease there is plenty of it) the chemical world is at odds with the environmental world as to what is the safest and most effective approach to secure a healthy living environment that won't cause long term mold sickness.
As usual, the CDC and all governmental regulatory entities that are supposed to be in the forefront protecting public health are comfortably riding in the caboose.
Unfortunately, this leaves us with no real public health safety advocates. Meanwhile thousands of us are getting sick and being bankrupted by outrageous medical costs, and while insurance companies take in our premiums and simultaneously say that mold and lyme sickness doesn't exist.
So, how does a person safely ensure they resolve mold? The only known way that almost every professional can agree on is to fully excavate the mold affected area and cut out the mold. That means opening up sheetrock and removing all areas that are mold affected and replacing it with fresh lumber and sheetrock. More on the specifics of how to do that process in a later post.
Mold remediation is extremely expensive, and that is exactly why you need to take preventative steps to ensure you never have a mold problem.
Most of us are so sick that we don't how to become mold literate or mold vigilant. For many of us, especially those with lyme and mold, we can barely function and manage our treatment protocols.
Again, and this can not be stressed enough, if you have been undergoing lyme treatment for some time and are still very sick or if you have only a clinical diagnosis of lyme/coinfections, you must get your body blood tested for mold antibodies to see if you are dealing with mold sickness. There are posts earlier on this thread to guide you on blood testing.
The process of life is that we don't learn about somethin guntil we actually have the problem ourselves. How many of us really knew about lyme disease until we knew we had it? Same with mold. My husband and I are currently going through the mold issue, and trust me, it is a homeowner's worst nightmare.
Hopefully, this thread will at least help create awareness to start others with learning to do your own early warning/prevention mold inspections. You can do it yourself. Read this thread in its entirety to learn what to look for.
I don't yet know what we will do in our situation regarding the decision about biocidal fungicide application. With my cognitive problems I am terrified that we may not make the right decision about this. This is a huge investment to do full mold remediation with sheetrock, lumber, flooring replacements, and basically gutting the bathrooms and kitchen down to the studs. We want to make sure we get it all out as much as possible. In our case, we have no choice. As sick as I am, my doctors say we can't live here unless we do it.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
BettyG. I don't know how to do what you suggested about posting this thread elsewhere on a newbie thing.
Hopefully someone who knows how to do that can post the link to wherever you are suggesting. It took me months just to figure out how to register and learn how to post.
I know there is a newbie thread thingy that you sent me when I first joined, but to tell you the truth I can never read it. It is too visually busy with all the different text formatting changes. Makes my eyes and brain swirl.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
CD57, I haven't re-read all of this thread so not sure if you have yet posted about the information you learned from Esoterix labs on the regional panels. If it isn't posted yet, could you please post what the lab told you and their phone number where others can call for their regional information?
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Disturbedme, I don't know about which lyme symptoms may be exclusive to lyme. But, I do have a possible tip regarding the reverse, symptoms exclusive to mold. There could be others. I don't know.
In a phone consult with one of my doctors yesterday I said I think I have isolated a distinction about my symptoms related to mold.
Of course, not everyone with mold has the same symptoms. Same as not everyone with lyme has the same symptoms. There are thousands of strains of mold, and each is may well produce unique symptoms.
That said, my unique mold symptom from long term chronic exposure (many years) is severe chronic nasal stuffiness. I can barely breathe through my nose at all(ever). I have become a chronic mouth breather.
Most of us don't know that chronic mouth breathing produces an entire constellation of symptoms similar to some of the symptoms of fibromyalgia, lyme, and mold! I have a good website link I will find later and add it here about mouth breathing symptoms.
I would suggest assess your nasal and mouth areas. I mean really focus on it with concentration for a few days. Our bodies, by nature's design, over time our body will acclimate to whatever conditions.
So, you could have these mold nasal/mouth symptoms and not even be fully aware of it. I had to have had for years without being attentive to it. I know I have always had allergy/sinus problems, so I always attributed my symptoms to that. But, it seemed strange to me that it wasn't seasonal at all. I was stuffed up ALL the time.
Basically, chronic mouth breathing alone (without mold or lyme) can produce some of our symptoms!! Who knew??
My distinguishing mold exclusive symptoms are: chronic nasal stuffiness, nasal burning, severe mouth, gums, tongue burning where it feels like your mouth has had a toxic acid mouth wash. It affects my taste buds. I have severe inflammation in my mouth tongue, roof of mouth...all over. And, it hurts and feels prickly.
My doctor recently told me that the tissue lining of our nose, mouth, stomach, bladder, and vaginal areas are all similar tissue and therefore connectively linked. With mold, it starts as an irritation in the nose, and will work its way through to problems into all the other areas. I have problems in all those areas except that my stomach is still not too bad, but I definitely have a leaky gut to cope with.
Prior to testing mold antibodies in my body, I have one doctor who said hmmm, I am not so sure that your symptoms aren't coming mostly from Babesia Duncani and Lyme. I had not told him yet about the severe chronic nasal breathing problem and mouth thing/breathing thing. I have so many symptoms that I couldn't really isolate anything.
My body is firing so many pain sensory overloads that my brain can't track right and so many cognitive/communication problems that I have a disrupted brain stutter thing that happens where my brain and mouth don't want to work well together.
Anyway, when I said yesterday about the nose/mouth symptoms and I am sure that means substantial problems from mold. I have never read about lyme or coinfections making anyone have a chronic nasal stuffiness or feeling like they have an acid washed out toxic mouth. I am talking very severe to the point of tears of every morning.
Prior to my husband relocating me into another safer room in the house, I was waking up every morning in agony and tears saying I am really dieing. My body feels totally toxic. My doctor said EUREKA, we have hit the motherlode...mold is the priority with you for sure.
My doctor said once I am totally removed from the toxic mold exposure (my house) that my symptoms could maybe improve up to 50% within 4-12 weeks, but I think that is very optimistic but I know they are trying to give me hope. It is hard to estimate as it could be much longer since I have had such a long term exposure.
Several months ago, I don't know how with my brain problme that I figured out to do this but instinct told me to drink Bragg's Apple Cider Vinegar in water. I knew I had a severe PH imbalance (tested with the home test strips). I was extremely acidic. Apple Cider Vinegar will help rebalance the body's acidity/alkalinity levels. I was desperate for anything that might help and doctors were not having any success with treating me.
The Braggs ACV helped though not a huge difference. If I didn't have such long term exposure and severe symptoms I think it would help even more. I was only taking 1 tablespoon in 8 oz of water, but it helped me to stop feeling so suicidal about the toxic feeling.
I need to try doing more of it and see if that helps me more at all.
I had one doctor tell me to stop the ACV saying vinegar is bad for mold patients and can feed mold, something about the process. I never understood it exactly right. But, I stopped the ACV and my symptoms worsened again! I researched it online and learned that the type of ACV I was taking (Bragg's) is processed differently. So, I restarted it on my own, and the severe intensity of toxicity symptoms lessened again.
From doing a bit of googling I learned that vinegar reportedly kills some molds. So, is the Bragg's ACV really killing any mold or just rebalancing my PH factor from acid to more alkaline? I don't know.
All I know is it somehow helps lessen the toxicty symptoms. I know I need to rediscuss this again with my doctors, but for right now I am doing what my body tells me is helping to give it some relief.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Disturbedme, the mold plate testing can seem intimidating, but it really isn't. Select rooms where you suspect could have water damage. Two plates might not be enough, but I don't know the size of your apt. The kit will say how many sq ft. it covers. Select rooms you think could have water damage, typically the kitchen, bathroom, etc., rooms with a plumbing water source are first places to check. However, if you have a window in the bedroom, you could have water intrusion leak around the window.
If your apt is on the top floor, the mold source could be in the roof/attic space; or, if it is on the first floor the mold source could be in the crawl space below.
It has been about a month since or so since we did our first mold plate testing with the Home Depot kits. With my brain I can't remember all the specifics, but hope the following helps you with some considerations:
-Keep all windows and do not vacuum or dust for 24 hrs prior to testing.
-Make sure the mold plates are 3 feet from the wall and about 3 feet off the floor.
-Make sure you have the heater/air conditioning fan turned to ON (we forgot to do that on the first tests!) It does make a difference! Make sure all vents are open.
-Do not touch the inside of the mold plates.
-Make sure you write in permanent marker on the top and bottom of each mold plate: your name/date/time of test/what room. That will be important for the final lab report coming back to you so you know what was found in each room tested.
-The mold plate exposure time is 1 hour.
-After the exposure time, be careful to keep the plates upright. It takes a bit of time for the liquid to set up. Our first set leaked and we think may have caused some cross contamination problems so we redid it just to be sure.
Our second set of mold plates were done through a different laboratory, the one recommended by my doctor. Here is their website regarding instructions. They are consistent with the instructions on the Home Depot kit, but gives more specific information with pictures. Visual aides always help!!
I can't remember if the Home Depot kit testing includes a phone consultation with the lab. Check the instructions, it will say.
The Immunolytics lab mold plates includes a free 20 minute consultation with the lab when the tests are done. Their kit includes 4 mold plates at a cost of $24. The lab analysis is an additional $175 for all 4 mold plates and the phone consultation. I think the Home Depot plates (through ProLabs) is cheaper for the analysis but the plate purchase price is higher. It all works out close to the same price when the purchase price and lab analysis costs are factored together. No major difference as I recall.
However, we were able to get the lab analysis for $125 ($50 off) by ordering through one of the doctors listed on their website. It just happens that one of my doctors is on the list on their website, so our kit came with a discount card to send in with the plates.
With the Immunolytics lab, you register on their website, and when the lab analysis is done they email a notice of completion, you go to their website to access and print out the report, or for $5 they will mail you a hard copy report.
On the 1st set of mold plates our doctor had us do a 4 day incubation of the mold plates, single stacked, wrapped in foil, put in warm dark draw/cabinet for 4 days.
Then, we put on latex gloves and unwrapped the plates. We set all mold plates on a cookie sheet where we had placed a white towel so that the mold spores would be more visible.
We had to use a cotton ball w/rubbing alcohol and remove the writing so we could take the pictures though. The first set of pictures the mold spores couldn't be clearly seen because of the permanent pen markings, duh.
Then, we emailed the pictures to our doctor who is mold literate enough to know by seeing the mold pictures whether we had dangerous mold.
However, we also went to a mold lab site online that has pictures of various mold plates with the mold types identified. We were able to visually compare what we had to the pictures and get some idea of what type of mold we had. This is jsut a curiosity step for us and is NOT recommended to substitute for sending the plates to lab to be professionally anaylzed!! http://moldbacterialabs.com/nggallery/page-145/
Our last set of testing plates is at the lab right now.
However, know that mold testing is like lyme testing: lots of false negatives. So, if the mold plates don't show mold, it doesn't mean you don't have a mold problem.
The best way to absolutely know for sure whether you have a problem is blood test your body for the antibodies. If you have elevated mold antibodies, you have a mold problem.
My doctor said that within 3 months of removing yourself from the mold exposure that mold antibody levels start to go down. So, it is a way to monitor what is happening, somewhat analgous to how the LabCorp CD57 panel is to lyme disease....kinda.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
ok, my brain is way over stimulated so...hope this info helps y'all with mold awareness considerations. Hubby has been gone today looking for a place for us to live while our house undergoes mold remediation.
Tomorrow hubby and I have to start getting our thoughts organized together about what things we need to take with us to the new location.
I don't know how in the world we are going to get me moved at all. They will have to carry me out of here on a stretcher with my laptop on my chest I guess and my bag of supplements hooked to the stretcher.
I will come back to check this thread as I can and help others, particularly to share specific information about steps in testing your house/work space and mold remediation.
I have tried to post as much as I can think of for right now while it is still fresh in my mind. My mind is like sieve and I won't remember things later. If nothing else, this thread is a place for me journal my process and a place for me to come back to a written summary of what we have read and learned.
If I ever get well enough, I will try to write a better thought out and more concise thing with a checklist type approach rather than so much rambling narrative. Sorry that everything I write is so long. I am incapable of organizing thoughts better. I have to jsut type things as I think it.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
For those sure you have mold in your home, I suggest that you at least get yourself a HEPA air filter. Keep it in the room where you sleep, and run it all night if you can.
The really good ones cost about $500. Costco has an adequate one for $100.
Before mold removal and ozonation, we ran our HEPA in our room some nights. The nights we ran the filter we slept well. The nights we left it in the living room, we didn't sleep much.
This includes my husband, who doesn't seem to have lyme, and denies any health problems...but has had this persistent insomnia problem.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
It occured to me that I should add learning source resource information to help you in doing your own homework. On this post I have listed all the books and DVDs we have purchased, and listed some (not all) of the FREE you tube video clips.
You tube clips is a great way to get your sealegs for free, but it won't be enough information to specifically guide you about testing or mold remediation. You will need instructional type resources to guide you to do that correctly.
Hubby and I are beginning to prepare for our next steps which will be to temporarily relocate me and remove me from the source of mold exposure. All my doctors insist this is a must and needs to be done asap.
While hubby has been out looking for a place for us to live the last few days, I have been trying to chronicle our crisis here to help others. I am bedridden w/laptop so I can't do anything more.
This at least is making me feel that I am doing something constructive to help others and it helps me sort out our process.
The physical stress and demands of the upcoming move may set me back into further relapse. I likely won't be able to keep up here when that happens.
Since I am bedridden (4 yrs), everything I have posted on this thread has been typed while fully reclined and typing on a laptop propped up with pillows so I can reach it. I mention that only because I want you to realize this where you could be headed if you don't properly assess mold as a factor in your illness.
Don't wait until you get like me. If mold might be a factor in your illness, find out NOW, and take preventative steps to at least remove yourself from the source of the mold exposure.
What you decide about mold testing and remediation process is secondary to the importance of removing yourself from the source exposure. My doctors are emphatic about that in my situation.
Once you are removed from the exposure source of mold, then you will be able to think more clearly, better evaluate your situation, and make better decisions about your next steps. That is something we SHOULD have done, but have been too overwhelmed to figure out the obvious.
Once you are removed from the source of the mold then your antibodies will start to improve. Doctors tell me they see improved lab results on the mold antibody tests of other patients within 3 months.
The sources where we have learned mold information are:
BOOKS: Unfortunately, mold books are quite expensive, but you may be able to find some used on Amazon.com. These books are on average about $20-$25 a piece. All of these books were very highly rated (4-5 stars) and specifically recommended by my mold literate doctors.
Surviving Black Toxic Mold Syndrome by Mary Beth Short-Ray, D.O.
Mold Warriors, by Ritchie Shoemaker, M.D.
Mold Illness and Mold Remediation Made Simple Gary Rosen, PhD, CIE & James Schaller, M.D., CMR
Your Guide To Mold Toxins Gary Rosen, PhD & James Schaller, M.D.
Locating Hidden Toxic Mold Gary Rosen, PhD, CIE
Mold & Mold Toxin Remediation Gary Rosen, PhD, CIE
Mold Survival Guide Jeffrey C. May & Connie L. May
The Homeowners Guid to Mold by Michael Pugliese, CMR, CMT (former insurance agent turned public advocate for mold assistance)
There is another one that has not yet arrived and I can't remember the name of it...will try to edit this later to add it.
DVDS: Unfortunately these are extremely expensive, on average they were about $125 each. Except for the first one below. I can't remember how much that one was but it was much cheaper than the other two.
TOXIC MOLD SOLUTIONS (cheapest to buy) Available on Professional Equipment.com This is series set supposedly tailored for different audiences. Out of fear we bought them all to make sure we didn't miss something important. Don't do that. The content is basically the same on all of them, just spliced and put together in different orders and says for a different audience. I would say get the one that is for IAQ Professionals, 3 DVD pack set and it has ALL of the other ones as part of it. The ones that say for schools, real estate, homeowners, don't get fooled by that. They are all the same as far as we can tell. This DVD is spliced together very short interviews with a multitude of professionals, from doctors to inspectors, home remediators, lab professionals, industrial hygenist air quality specialists, microbiologists, etc. All they do is change the order around of which interviews are shown in what order, but it is the same people and the same content on each DVD.
My husband thought the Rudd DVD is the best to guide a man about the repair information. It is very well done. If you are only going to get one DVD, this is the one to get.
MOLD, A GROWING CONCERN By Franxis X. (Rich) Finigan, Home Inspector Available on Professional Equipment.com
This DVD has good information as well. It is a Home Inspector Training Course, funded and through Allstate Homeowners Insurance. The guy seems knowledegable, but his style can grate you a bit, or it did hubby anyway. It definitely gave us insights on how these guys are trained to "talk impressively" and educates them about the fears of mold. My husband felt it was very suggestive to train home inspectors about fear mongering a bit, but hubby is highly sensitive right now about that issue. He has a huge decision to make about our home, and is irritated with how hard it is to get direct, affordable, and credible information.
There is much available online and in books, but we were looking for an actual demonstration process about mold testing and mold remediation. We found that with the DVDs, particularly in the Rudd Production DVD.
The DVDs don't just talk about it, they are training videos by home inspectors to train other home inspectors on what to do. It is very detailed with close up shots on how to do mold surface area samples with swabbing, tape lifts, cutting out sample areas. They show you how to do it all, including air spore sampling. Shows you all the equipment options, how to decide which ones to use in your situation. All have their limitations, and no one test will tell you everything you may need to know.
The Rudd DVD even shows you exactly what happens to your samples when they reach the lab and how they are tested.
FINALLY, FREE SOURCE INFORMATION!!
You Tube Videos To Help Learn About Dangerous of Toxic Mold
There are some excellent you tube videos that will help you learn MUCH about mold for free!! There isn't a lot on thorough remediation tips, but enough to get your awareness about it.
The problem with you tube is it is all short clips so you are getting just a glimpse of how to do things. In contrast the above DVDs by the home inspectors do show you in great detail exactly how to do different kinds of testing in your home.
Remember, hear from as many different "experts" as you can because there are varying opinions
Visual Contrast Test Demonstrated: http://www.youtube.com/watch?v=snHNH7Dpd1U&feature=related (This is a test that you can do online for $15 at Dr. Shoemaker's website) It takes about 20-30 minutes to register and do the test, and you get an instant result report. However, it is not fail safe. For example, I have a severe long term mold exposure problem, and I passed the test.
My doctor redid the test in his office because he could not believe I could pass this test given how bad I am. I passed it both times with flying colors. My doctor said all he can figure is that I have honed an ability somehow to functionally compensate. That is what first made him think my illness was not mold related, and that it was more lyme and babesia (Igenex positive for both). However, I insisted on doing the body blood testing for the mold antibodies. And, there it was, MOLD!!
Now, in retrospect I can more clearly see all the patterns were there all along. I didn't see it. My doctors didn't see it.
I haven't yet checked out this website, just learned about it from one of the above you tube clips where a homeowner who had a mold problem and a insurance nightmare. She ended up with a HUGE jury award ($32 million), now on appeal, from Farmer's Insurance. She subsequently created the following website to help others learn about navigating the insurance issues.
Make sure you educate yourself thoroughly before you ever call your insurance about a suspected mold problem. It can get your policy flagged as a possible high risk homeowner where you will be more closely monitored for claims etc. Many have experienced premium hikes or being cancelled for a variety of odd reasons thereafter. Just be careful. Hopefully, the following website will say more specifics.
Ok, I can't find it right now, but there are about 3 instructional you tube video clips on mold remediation by the same guy whose name I now can't remember. I think I saved links somewhere though. With my brain I will never likely find them. I always try to put all these links into emails to myself with a subject line that will help me find things again.
Anyway, this guy was funded after Katrina to do water damage clean up instructional videos to help New Orleans residents learn what to do regarding their home cleanups.
The videos are pretty informative, but they do recommend the application of the now controversial biocidal fungicidal agents (Foster products). Most literature recommends the same. There is more on that controversy in a preceeding post so please scroll up to learn about that.
I haven't yet extensively researched online to see what information is out there about this budding research controversy.
A quick google search using the search term: "biocidal risks research controversy" brings up the following, but not specifically about mold. It presents the same basic risk theory in relationship to antibiotics and the resistent transformation issues. So, the theories are out there, and it makes sense that it could be applied to mold biocidal fungicide products.
http://www.cababstractsplus.org/abstracts/Abstract.aspx?AcNo=20033083922 There has recently been much controversy surrounding the increased use of antibacterial substances in a wide range of consumer products and the possibility that, as with antibiotics, indiscriminate use of biocides might contribute to the overall pattern of susceptibility in the general environment and in the clinic. Such speculation, based on the isolation of resistant mutants from in vitro monoculture experiments, is not reflected by an emergence of biocide-resistant strains in vivo. This review provides a broad coverage of the biocide and resistance literature and evaluates the potential risks, perceived from such laboratory monoculture experiments, against evidence gathered over 50 years of field studies. An explanation for the continued effectiveness of broad-spectrum biocidal agents against the decline in efficacy of therapeutic agents is provided based on the fitness costs of resistance and the ubiquity of naturally occurring substances that possess antibacterial effect. While we conclude from this review of the literature that the incorporation of antibacterial agents into a widening sphere of personal products has had little or no impact on the patterns of microbial susceptibility observed in the environment, the associated risks remain finite. The use of such products should therefore be associated with a clear demonstration of added value either to consumer health or to the product life. Hygienic products should therefore be targeted to applications for which the risks have been established.
Publisher: American Society for Microbiology (ASM) =================================================
School of Pharmacy and Pharmaceutical Sciences, University of Manchester, Oxford Road, Manchester M13 3PL, UK
Abstract Considerable controversy surrounds the use of biocides in an ever increasing range of consumer products and the possibility that their indiscriminate use might reduce biocide effectiveness and alter susceptibilities towards antibiotics. These concerns have been based largely on the isolation of resistant mutants from in vitro monoculture experiments. To date, however the emergence of biocide-resistant strains in-vivo has not been reported and a number of environmental survey studies have failed to associate biocide use with antibiotic resistance. This article gives an overview of the issues as they currently stand and reviews data generated in our laboratory over the last five years where we have used laboratory microcosms of the environment and oral cavity to better understand the possible effects of real-life biocide exposure of these high risk ecosystems. In general, whilst biocide susceptibility changes can be demonstrated in pure culture, especially for E. coli towards triclosan, it has not been possible to reproduce these effects during chronic, sublethal dosing of complex communities. We conclude from this review that whilst the incorporation of antibacterial agents into a widening sphere of personal products may not overtly impact on the patterns of microbial susceptibility observed in the environment, the precautionary principle suggests that the use of biocides should be limited to applications where clear hygienic benefits can be demonstrated. ================================================ When I googled "mold biocidal risks research controversy" it says no results found! But then lists some similar related website research hits. The first one is the AIHA, the American Industrial Hygeniest Association. http://www.aiha.org/content/AccessInfo/consumer/factsaboutmold.htm
This is the professional association for professions who research and work in industrial air quality industry.
According to all the books and DVDs we have bought they are a very highly respected organization, and are the people everyone else looks to know and answer questions about safe air quality standards.
Their website appears to have a good (free)FAQ section on The Facts About Mold, so you might want to check that out.
The following is what the AIHA has to say about Biocidal use. To me it is a politically safe answers; probably because they know there is controversy among their membership and therefore not taking sides about it, not publicly anyway.
Their language leaves it to subjective interpretation. That puts us right back to square one.
AIHA on Biocide Use Determination:
QUESTION: Are biocides useful or required in remediation projects?
ANSWER: Biocides are disinfectant chemicals used to kill germs. In most mold remediation projects, biocides are not a substitute for thorough cleaning. Biocides are of limited use in remediation of indoor mold contamination for two main reasons:
1) Biocides do not remove allergens that can lead to allergies in sensitive individuals nor do they remove other metabolites from mold that can cause adverse reactions in some people. Even though the application of biocides may kill mold spores, the only way to remove the allergens and other metabolites is through the physical elimination of mold and moldy materials by thorough cleaning or removal.
2) Commonly used biocides do not effectively kill molds. For example, active fungal growth on a surface may produce a spore density of 1 million spores per square inch. Treating this site with a biocide that has an effectiveness of 99.999% would still leave an estimated 10 viable spores per square inch. As such, mold growth may recur if the underlying moisture problem is not resolved.
Biocidal treatments are indicated only when the contaminant is one of the few fungi that are known to cause human infection. This is particularly important in health-care facilities or other places with occupants who have impaired immune systems or who may be more susceptible to infections.
=============================================
American Industrial Hygenist Association FAQs answered on their website:
* Introduction The Facts About Mold: For Everyone * What is mold? * How does mold get into a house or building? * How can I prevent mold growth? * Can mold be toxic? * What is ``black mold''? * Why are we concerned about mold? * How do molds affect people? * Who is affected by exposure to mold? * What should I do if I see or smell mold in my home? * Should I test my home for mold? * Who do I call to deal with extensive mold growth in a building? * The Facts About Mold: For the Professional * How should a building be evaluated for mold growth? * When is sampling necessary in a building evaluation? * Why is there controversy about the health effects of exposure to mold growth? * Why are there no standards for mold exposure? * With no standards, how do I interpret my sampling results? * Does mold remediation always require isolation/containment? * Are biocides useful or required in remediation projects? * What are the knowledge gaps concerning mold exposure and its health effects? * Resources * For More Information * The Facts About Mold: A Glossary * Common Indoor Fungi
==============================================
Since hubby and I are going through this and have read and watched all this about mold, we have really become educated about mold. We don't know everything, not even close to it. It is the tip of the iceburg, but sharing here to help others about it.
Those poor people around the country who have gone through natural disaster water damage events with hurricances, tornadoes, floods, rains.
Every one of us needs to please say a little prayer right now for all those people who are probably sick caused by mold problems and don't know it and their doctors don't know it either. 2 hours in medical school on mold is nothing, and that is all doctors get. That is just so wrong on so many levels.
It is Mother's Day, so for all the mothers around the world who are coping with mold sickness in their family, bless your hearts for being such heroes determined to find answers. There are answers out there for you. Don't give up. Keep looking for answers. If one doctor doesn't know, find another one.
This thread has information to guide you to informational sources to learn what you need to know, including how to:
(1) Blood test your body for mold antibodies (Esoterix LabCorp mold antibody test)
(2) Properly inspect and test your house, work, or vehicle (especially if you have long commutes in vehicle not garaged)
(a) Surface testing options: swabs, tape lifts, or cut out samples from carpet, drapes, wood, sheetrock, etc.
(b) Air sampling testing options: mold gravity petri plates (Home Depot or Lowes) and air spore trap testing (usually done by a professional home inspector, but very costly that way. You can do it yourself for less.
Dr. Short-Ray recommended to consider ExaminAir Home Test Kit, www.examinair.net, also available at www.myhealthyhome.info (866) 743-8563. $400 per kit/3 rooms. It tests for molds and allergens such as dust and dust mites. For another $40 they will provide personalized expert advice regarding your results.
I haven't used them, so can't say personally. If Dr. Short-Ray recommends them though I would trust it. She thoroughly checks out everything she recommends as her recommendations originate from her own pursuit of mold remediation and prevention. She has the cursed mold susceptibility gene and was chronically ill for several years before figuring out the source of her illness.
[ 05-10-2009, 04:22 PM: Message edited by: jam338 ]
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Bejoy, yes, yes, yes about the HEPA air filter. I forgot about that! I think hubby got the same Costco ones as you mentioned. They seem to do good in a regular size room.
My doctors recommended/insisted we buy 2 Austin Air HEPA filters, one for each floor. We got them on Amazon.com, both were about $900/free shipping/fast delivery. They come in colors, we selected black. Hubby thinks it looks like a stereo speaker and not some ugly chunk of steel thing.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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R62, thanks for link earlier on the BENEFACT, I totally missed that I think! Thank you as I didn't have a source for where to get it. I think one my doctors might be looking into resource linking it available on her website.
I found only 3 links for it online, the one you gave looks maybe to be the cheapest, especially with it on sale until May 17th. The small 4 oz pump bottle size is 50% and is $3.99. The gallon size is on sale for $39.99. Since it says use full strength, it will take a lot of it, ugh. I wonder how much it will take to do an entire 2,800 sq ft house?? http://householdtraditions.com/benefect.htm
My doctor said use Benefact. One of the DVDs or you tube clips we watched says use PINKROBIAL soap, and another talked about a Fosters antibacterial product. There has been a few different ones mentioned, mostly chemical of course.
I am reasonably sure the last 2 are likely chemically laden products which may be ok in househoulds without chronic illness/compromised immune systems. But not for us with this disease.
I think go with the BENEFACT, a natural substance of Thyme Oil, as recommended by one of my environmental docs.
She says anyone with chronic illness should not be exposed to chemicals. No one should, but especially not us.
Not sure what is in them or how they compare cost wise to the BENEFACT (thyme oil); but both are organic options.
My husband just got home from grocery shopping and for the first time ever is buying ORGANIC, yeah!!! I am so proud of him for finally getting that he needs to buy organic things for me!! And, he brought me beautiful red roses for mother's day, even though I am not a mom. I have been his lil mama though for 40 years this year.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Jam, you are inspirational, and such a wealth of information! I am sorry you are bedridden, and hope you will find greater health soon! Thanks for sharing all of this with us.
When I got "molded" recently (moldy storage came up from the basement into the house), I had to up my hydrocortisone from 5-10 mg a day. (At one point I had been up to 35!)
At this point, now that my lyme is relatively inactive, it makes all the difference in me being able to take care of myself and solve my mold problems, or being trapped behind my computer. For those with adrenal exhaustion, this is a must.
Today I am ozoning all kinds of stuff outside. I have a giant plastic box, and all the down comforters, pillows, stuffed animals, etc, are getting their turn.
After that, I am throwing a tarp over the bookshelves, closing the door to that room, running exhaust fan, and ozoning all the books.
If you read the research, that is what they do for grains with mold and mycotoxins in them, and it works. So far for me, the results have been terrific.
Just removing the major mold was not enough. The spores and mycotoxins remained and had to be dealt with. After about 30 hours of post mold removal high volume ozoning, I'm not reacting to much in my house or cars anymore.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Bejoy, thank you, I think I really need to learn more from you about this "ozoning" thing that has helped you. Maybe it might help me.
Where did you buy the ozone machine thingy? Are there specification things to be aware of when selecting the correct unit?
Sounds like ozoning might be a good option to treat our personal things with linens, clothes, books, etc?
I have been trying to figure ok how do we safely treat things that can't be sufficiently washed down; i.e., upholstered pieces, drapes, etc.
Tomorrow hubby is going to start with packing up all of our clothes out the closets. Unfortunately, every bathroom has had a water intrusion incident through the years and has a closet on the backside.
All the clothes have to come out of the closets. Be washed in some type of disinfectant and packed up.
The contractor needs the closet empty with full access from the back side of the wall in order to see how far the water damage may have spread beyond the bathrooms.
Guidances say you have excavate the mold to a clearance level of 2' beyond the mold affected areas. Similar to cancer surgery where they want a good margin of clearance of healthy tissue/wood.
How long is the ozone treatment period for each box of things that you are doing?
Where did you buy your ozone treatment thingy?
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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It cost about $400. total. As advertised, it seems to be the lowest cost unit with the highest output on the market. (You can get higher output, but will pay thousands.)
There is a knockoff of the same machine for a little bit less, but I prefer to use the company with a longstanding good reputation who developed the item.
The unit comes with a chart about how long to do rooms by square footage for degree of problems.
I just make a fair guess, or I douse for time about how long to ozone each box. For most things like stuffed animals that have lived in bedrooms, I have been doing about 15 minutes.
My bookshelves I am doing an hour and a half, because some of the books came out of the basement.
Anything foam rubber I just get rid of, because it degrades and off-gasses too much in ozone.
Warning, do air everything out well after ozoning. I got a stiff ozone treatment from inhaling and skin absorbing a bit much of it. It zapped my elimination systems with die-off toxins.
It took a while to recover from the overload, but helped me realize how useful ozone might be for personal treatment as well.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Can't remember if I mentioned about this. One of my docs has hubby give me 1mg of compounded Hydroxy B12 injected twice daily. If I miss a shot, my toxic nose/mouth problems and other symptoms (especially brain)worsens.
Until we can get relocated, my doc wants us to experiment with increasing the levels to see if it helps control my symptoms more.
Once we are relocated away from the mold source I will probably not need as much.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Thanks this is a very informative post.
I have mold here in my home...i moved here and got bit by a tick all around the same time in 2000. I have no clue what symptoms are mold and what are lyme. Is there anyway to know?
My original symptoms were sore throat...but then that went away for about a year...and then i became very ill in 2005. It confuses me that I can have some good days even while living in a moldy environment. If it was all mold would my symptoms have changed from 2000?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
hi Cantgiveup yet. Sorry you have the mold issue too:( The symptoms of lyme and mold are very similar. The only distinguishable difference I have ascertained is the nasal/mouth/lung (breathing passage ways)inflammation/pain/toxic feeling. But, I can only relate my own symptoms, which may not be the same with yours or anyone else. Just like lyme disease, no 2 are exactly the same.
I am sure there are other differences. Wish I knew more. There are many sources online for lists of symptoms for lyme disease and lists of symptoms for mold. I have yet to come across one that provides a specific list of where they are dissimilar from one another. When I ask doctors that question, the only thing I have been told is the nasal/mouth/tongue/gum toxic inflammation is definitely suggestive of mold.
Mold, like lyme disease, is a clinical diagnosis for the most part. But, where mold is different from lyme is with the accuracy of mold antibody blood testing. It is VERY accurate as opposed to lyme disease antibody testing which can very inaccurate and unreliable. Not so with mold testing for the body.
Mold testing for the environment is another issue and is similar to lyme disease testing with false negatives.
Here is something that could be happening with you with having times when you feel better and it confusing you about mold.
I don't know what the humidity issues may be wherever you live. But, it could be that the days you feel worse are higher humidity days.
You can easily monitor the humidity factor for a few days and chart your symptoms. See if there any patterns for you that are consistent with humidity going up. Walmart has digital temperature/humidity gauges for less than $10.
According to one my mold literate docs, something important to know is that various species of molds "bloom out" at different times of the day, sometimes only for short periods of time, about 15 min. Mold is still in the air all day but will be most intense during its bloom period and shortly thereafter.
That is why air testing can be so difficult with many false negatives. How does one know which 15 minutes of the day to do the test? You don't. It is all guesswork.
The air spore test lasts only 2-10 minutes, depending on which equipment is used. There are several manufacturers of air test machines, and they all give differnt guidelines for their equipment. OMG the air test information is a whole other post. I forgot to post about the nuances with that! More later on that part.
Back to your situation, there could be a variety of reasons why you don't feel it all the time. If it is in early stages for you, and you have not had years of exposure like me, whenever you are away from the house and able to breathe normal air, your symptoms may dissipate.
For example, if you work you are out of the house for sustained periods of time.
Doctors say notice if you feel better when you are away from your house for several hours, but in cases like mine of extended years of exposure there is no improvement at all felt by just being away from the house for a few hours.
I would need to be away from the mold source for several weeks before I would possibly notice any improvement, but 2 of my doctors said it could happen in 2 weeks. I am not talking about recovery. I am talking about noticing any lessening of symptoms.
Mold suffers also notice a difference in the time of day and how you feel. That, in my opinion, is directly related to how humidity affects mold. Mold is usually more active the more moisture it has.
So, early morning hours of the day the air is still very moist out with dew on the grass etc. It takes several hours for the sun to dry mother earth out. As the sun starts to set, moisture level rises again. That is true no matter what part of the country you live in.
Before I knew I had mold as factor, I knew I had a weather pattern, but thought it was something to do with the barometric pressure. Maybe that is a factor regarding mold blooms too. I don't know yet. If barometric pressure goes up when humidity is up, then that would make sense as well. I haven't checked that pattern yet.
I have noticed that winter definitely makes me much worse. I could never figure out why until now. It makes perfect sense. Less sun, cooler, moister weather...mold goes up!! Duh!!
So, you could be ping ponging with symptoms in response to when and what molds are blooming!!
you are going to so if you have not had mold in your house for a very long time it could be that you are only getting periodically "molded", as Bejoy calls it. Meaning only that is when you are noticing or feeling "molded" ...trust me, your body is being "molded" all the time if you have mold in your environment.
I hope this explains more about why you are having variability with symptoms with mold. As time goes on and you remain in the same mold active environment, that window will close. You will get more and more worse days, and eventually no good days left at all.
Then, you start getting periods of bedridden days, and those gradually increase until you are bedridden all the time, like me.
Anyone who is mold exposed should learn from this thread and not unknowingly do nothing about their situation. If you do, you risk ending up like me.
I have not had a Christmas tree in 5 years. Not a big deal, but I kinda like a Christmas tree. I have not been able to attend a family function in over 5 years. I have missed family weddings, anniversaries, funerals. Now, no one expects me to attend to attend and they no longer even ask. For the most part, it is like I am already gone and all that is missing is the headstone.
I don't want to see any more families wrecked by this stupid disease that no body tells us the risks of our damn daily living environment.
I would feel horrible if I had kids and knew they were made ill because I as a parent failed to provide a safe living environment.
Mold shows up in kids as symptoms with ADD, ADHD, asthma, learning disabilty, risk taking, social interaction disorder, rebellious behavior...of course any teenager exhibits the same symptoms;)
One of the doctors who first started writing about mold as problem with kids was a child psychiatrist. He started noticing the patterns in his own kids and with the kids he worked with.
Guess where the mold is coming from? SCHOOLS!! Schools are notoriously bad environments for kids. Schools never spend money on needed structural repairs with leaky roofs. Old schools are particularly bad as most of them have flat roofs.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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Any building structure that has a flat roof (home, school, work, stores) are high risk mold havens. Flat roofs are cheaper to build than peaked roofs, but the problem is they don't have "roof pitch" (angle) so the rain water can't roll off. Instead it sits flat with no where for the water to go.
Over years the sun will bake the roof materials enough to cause the roof material to crack and allow rain water to penetrate. All roofs are subject to leaking, but flat roofs are the worst!!
So, be aware of your surroundings. Try to never buy, rent, or work in a place that has a flat roof, especially not an old building. It likely has hidden mold problems!!
If you have to live or work in flat roof building, you can mold test your immediate environment if you see anything that is suspect. And, you get cubicle area HEPA filter machines. That will ensure the air in your immediate air is scrubbed and mold pollens filtered out as much as possible.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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Ensure you have a vacuum with a true HEPA filter bag. Not a HEPA-like filter. Read the fine print.
Do not use a bagless vacuum cleaner. That is a HUGE no no for mold. Whenever you dump the container out, you are unknowingly releasing thousands of mold spores in your immediate breathing space.
Make sure you carefully remove the bag, and even put a piece of duct tape across it before you carry it out to the garbage.
We have had a bagless vacuum for years. Who knew? Hubby just Goodwilled it and bought a new Eureka Boss Smart HEPA vacuum, rated a best buy for emissions in Consumer Reports, and it is very quiet. He loves it.
Three years ago we bought one of those little round disk auto robot vacuums, battery operated, where it racks itself and auto cleans. I thought wonderful, because I can't clean. Now I learn that is the worst thing I could have done. It has squat for a filter screen, and in the right sunlight angle you can see the dust/mold tossup. Who knew???
Almost everything we have been doing is wrong, wrong, wrong for a mold sick person.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Jam -- I have another question that I have no idea the answer to, so I hope you will.
My husband has had the mold test done and a few of his mold titers were high. But how can you tell if they are recent mold antibodies or from living in another moldy environment such as the house he grew up in and hasn't lived there for more than three years? The antibodies are only IgE, so it's not like IgM or IgG.
His test reads (I'm just mentioning the ones that were high, as there were others that were not):
Alternaria tenius - high Aureobasidium pullulans - high Stemphylium solani - high - was higher than the others Hormodendrum hordei - high
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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WHAT YOU SHOULD KNOW ABOUT YOUR HEATING AIR CONDITIONING FILTERS:
Use only MERV11 grade filters. They are the most mold efficient filters. There are higher grade numbers like MERV15 and MERV16, but be careful about getting something beyond MERV11 or MERV12.
The higher numbers are more dense fabric fibers, but most home air conditioning systems are not designed with enough power for that high of a filter. You will risk choking down and eventually burning out the motor on your HVAC unit!!
For filter replacement, any Walmart, Lowes, Home Depots has the typical sizes, but you can order them online, usually at a better discount and free shipping if you order a quantity.
They stock every size conversion made, and if they don't have it they are set up to custom make it for you. A great resource for reasonable priced filters.
Home inspectors and remediators say replace your filters every 2 months. Make sure before you replace it, to have anyone who is mold sick or chronic illness of any sort out of the house or in a different room with door shut.
Take a plastic trashbag with you, along with the new filter. If you the mold sick person is the one having to change the filter, they recommend you wear a N-95 respiratory mask (Walmart less than $5)and wear latex gloves, and long sleeves, and eye goggle things (hardware section).
Remember, your body by design of nature is a sealed unit with intended openings only at your eyes, ears, nose, mouth, vaginal, penal, rectal openings. Unwanted viral pathogens/infections of any sort can only enter your sealed body through those opening access areas or through cuts/abrasions in the skin protective layer. So carefully protect anything entering your body through any of those areas;)
Back to the filter change, put the old filter immediately into the plastic bag and immediately air tight seal it with a twisty tie or tie in a knot. Do not carry an unsealed bag or unbagged filter through your living environment. You risk cross contamination of mold spores if you do. Remove and discard latex gloves into the trash and thoroughly wash hands with antibacterial soap.
Never ever take short cuts to think you are going to wash out or hose off a filter and dry it to save money. It is not worth your health. Filters are not that expensive, and the risk costs are huge.
Again, these extreme protective measures are critical for anyone who is mold susceptible, mold sick, chronic illness, elderly, small children, or anyone immune compromised.
Healthy people don't have the same risks,but would be wise to take the prudent precautions given how sick mold toxic poisoning can make you.
Also, in summer, or whenever seasons you are running your Air Conditioner, it would be wise to synchronize that every time you change the filter, also check the drain tube at the airconditioner unit outside to make sure it is not clogged.
Mold literate doctors actually recommend that you keep all windows closed and operate your HVAC fan system all the time (with or without AC on) to circulate and clean air through the MERV 11 filters.
In our house, as previously stated, we now have additional Austin Air HEPA filter portable units, one on each floor, and a smaller Costco unit in the kitchen (high mold area) and the bathroom we most frequently use. Primarily because we have had water damage in all those areas.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
about 20 yrs ago i had a horrible reaction to nizoral
no doc has been able to explain it to me
i take nystatin and diflucan with no problem
could this mean i have some kind of mold problem?
i know i am sensitive to mold-but i think i am staying away from it. i get real sick real fast if i am near it enough to smell it.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
re HEPA filters and their ability to absorb mold spores.....is this sufficient for a house that has a mold problem? Ie, would you not have to remediate if you had these running all the time?
Not a question for me by the way.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Disturbedme, what 2 of my mold literate docs have said is that IgE only shows an allergy to those molds. IgE is the typical panel run by most nasal allergy docs. My mold literate doctors say the IgE in their opinion is uselss for chronic illness/immune compromised patients.
IgG, I am told, is the actual antibody EXPOSURE test, and the relevant test for immune compromised patients like us. Traditional allergist entirely disagree and don't get it. Environmental specialty docs say they are misguided and drinking the koolaid from the 2 hour med school training that is no longer relevant or consistent with known research that changes the entire paradigm.
So, your hubby likely needs to consider having the Esoterix IgG panel done. I have recently learned through another member on this board who recently contacted Esoterix that there are regional panels for various areas of the US where various mold species are more patterned prevalent. That is the one he likely needs to have done now. You can call Esoterix labs and ask to talk to a lab technician, not a clerical person who answers the phone.
The only way for there can findings on the IgG exposure panel is if one has had recent and/or ongoing mold exposure.
My docs say that once a mold susceptable person is removed from the source of the mold exposure, within 3 months the antibody titers start to improve. With treatment it will substantially correct, but depending on how much nerve transmitter damage has been done from mycotoxins, will be a variable on what extent symptoms may improve. Some symptoms are extremely serious and even deadly with liver and kidney cancer, brain cancer, organ damage. Deadly toxic mold is really serious stuff for the 25% of the population who has the genetic deficiency factor (again the genetic deficiency factor is reliably blood testable as well).
So, mold antibodies are actually more reliably testable than lyme disease. There could be variability factors that are less certain in short term exposure. I just don't know yet. I have a lot yet to learn with all this.
I am acquiring as much knowledge as I can from my phone consults with these docs and posting what I learn here on this thread to help others.
I wondered the same thing you as about your hubby's situation. For example, I know I had high mold exposure in my previous workplace and when I visited my brother several times for a week at the time about 5 years ago. His house is full of mold.
I have not been able to work in 5 years; bedridden/homebound for the last 4 with the exception of doctor appts. That was significant diagnostic consideration for my docs as it defines exposure risks; my house!!
I thought maybe it was my work that might have caused it, or maybe at my brothers bachelor pad where things are well less than it should be. Both doctors said no no no, it is neither of those places. It can only be your house as you have rarely been out of your house for the past 4 years. Not enough outside exposure to alter anything.
Again, once I am out of here for 3 months my antibody titers should start to shift, according to them. So, if your husband has been out of the other exposure environments for more than 3 months, it is really doubtful they were the cause....UNLESS, he had an extremely long exposure rate in the other evironments lasting several years. Then, it could be possible that his body has just not cleared the mycotoxins out of his fat storage cells. It takes a long time.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
CD57, HEPA filters are not a replacement for mold remediation, but they can help lessen symptoms. Mold literate docs say that if a person jsut can't do mold remediation for whatever reason (financial or they are renting) strong high capacity HEPA filters can help lessens risks and perhaps help with symptoms.
In my case, I definitely got worse when we had to turn our Austin Air HEPA filter units off for 24 hrs prior to doing the mold petri dish plates.
But, I can tell you even with them on full blast, my symptoms are still severe. But, that is because of long term exposure and how bad I am.
When I read the review ratings on amazon.com, many people there reported they noticed huge differnce, but they were not dealing with toxic mold. They were dealing with typical seasonal mold pollen, house dust, and pet allergy kind of things.
[ 05-11-2009, 01:15 AM: Message edited by: jam338 ]
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
lpkayak, I don't know the answer to your question, maybe Emla999/Lyme might know.
I know one of the mold strains I was tested for relates to candida. I tested very high for it. But, my doctors have not said what to do about it regarding treatment.
It is on my list of questions to ask them whether I should start Nystatin or what.
Right now their primary interest is for me to get relocated without starting anything new, let me recover from the strain of the move, go through flare adjustment, and then start introducing more treatment options.
I'll post what I am told by them about. I hope this thread won't be hard to find by that time though. It if makes it to back pages, I don't have cognitive ability to find it again.
I should send the link in an email to myself just in case.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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On amazon.com they now feature the smaller the Austin Air, Jr size for $300. The ratings say 4 star on it, but I remember reading (and now can't find) where users who had both said definitely get the larger the unit. http://www.amazon.com/Austin-Healthmate-Jr-Air-Purifier/dp/B00029YUAU
I am sure there other HEPA units out there so check around. This is just the one that both my mold literate docs said to get, so that is how we decided.
Costco has smaller more affordable units, but not probably as efficient as the Austin Air. They are smaller and take up less space, but look like a large heater cylinder type thing. Hubby bought those too. He has things all over the place trying to keep this place as safe for me as possible until we can get temporarily relocated elsewhere, and mold remediation can begin here.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
WHAT YOU NEED TO KNOW ABOUT AIR SAMPLE TESTING:
Just roughing this post in for now before I forget to do at all. Will fill it in with more specifics as I think of it.
There are lots of variables on indoor air quality testing equipment. Different types of equipment, different manufacturers,etc. The cost of the units alone can range from hundreds to thousands of dollars.
I am guessing the variances relate to equipment capacity to test residential vs large commercial and with chemical assessment capability in industrial settings, so not just testing for mold spores.
It is important to KNOW that the technician truly knows how to use the equipment. Many don't. Anyone can purchase this equipment online. You can even purchase it yourself and test if you learn what to do.
Key things to interview your technician about to assess whether or not he/she knows what they are really doing:
-Ask what calibration protocol they use with their equipment. If they don't know what you are talking about. Find another testing professional.
Proper home inspectors will know that it is important to calibrate the air test equipment after each every air test location in your house. Not just at the beginning of the job. It has to be done after each sample is taken. It takes additional time to do that. And, many will cut corners. Time is money. If you don't know they are supposed to do that, they probably won't.
-Also, make sure their protocol between air sample testing includes swabbing down the inside of the air tester with rubbing alcohol and let it adequately dry out between tests. Again, takes more time to do it right. The importance is to avoid cross contamination with the air test results.
If they air tested the bathroom where there was stachbotrys, you want that cleaned out before they test the next room so they are not cross contaminating the rooms with carrying stachybotrys into a room that didn't previously have it, AND that there is no stachy residue where the air test in the next room will show stachy but there really isn't any, it was just left in the machine residue.
-Make sure they do an outside control air test as well as the inside tests. The outside control is critical in air testing as you must have a source control to compare against. The mold spores in the indoor air smaples should be at least 3 times lower than the outdoor air. Except in the case of dangerous toxic mold, where there is no acceptable level of it indoor at all.
-Make sure you interview them about the lab where they will be sending for analysis. Verify yourself by looking it up online and ensuring the lab has the right certifications. I'll add more to the post later on what those are.
-Ask the inspector if the lab analyzes 100% of the trace sample or 15%. If he/she doesn't know, consider finding a different tester. If the lab does not analyze 100% of the trace, ask for a different lab or ensure that they will analyze the entire trace. Analyzing only 15% risks missing a lot of possibilities. Many labs only look at 15% because it cuts corners/costs.
I will try to come back here later and post the names of labs that I have read do 100% trace analysis. There were only a couple as I recall. That is not to say they aren't others, it means they weren't mentioned in the all source learning information we purchased.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bettyg
Unregistered
posted
jam, yes, please copy the link and send it to yourself, as daily things on 1st page are on page 2 & 3 IF many new folks sign up at once!
outstanding info you're giving. i'll copy this link to TREEPATROL'S NEWBIE LEARNING LINKS TOO so it can be PRESERVED!!
EDITED: YOU POSTED IT THERE ALREADY...outstanding jam!!
big thanks for everything! *************************
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Lpkayak,
Anti-fungal drugs often have different levels of effectiveness for different species of molds.
For example,the antifugal drug Diflucan (Fluconazole) is virtually worthless for treating an Aspergillus mold infection.
While the antifungal drugs Sporanox (Itraconazole) and Vfend (Voricanozole)are extremely effective against Aspergillus mold.
There are several different species of toxic mold/fungi that one could possibly be infected with.
I don't know what all the different molds are that Nizoral can kill but it is possible that Nizoral was able to kill off some kind of mold that the Diflucan and the Nystatin were not able to kill off.
So, if the Nizoral was killing off mold/fungi within your body then you could have been experiencing a rather strong mold herx.
Or it could have just been some kind of toxic reaction to the Nizoral.
posted
Emla999/Lyme (or anyone), I have another question.
One of the things listed on my Esoterix mold antibody results is candida albican, which is shown to be high, 45.5.
As scored by Esoterix, that is a comparative 3 on their scale of 0-5, but is almost a 4.
A 3 is over 20, but under 50 A 4 is over 50, but under 100
I forgot to ask my doctors about the candida albicans issue. Three doctors have seen the test results, yet not one has commented or made specific recommendations regarding this particular candida albican part of the test.
Can candida albican be a mold or is this likely to be an add on test panel to check standard yeast levels?
I have some compounded nystatin here, but not currently taking it. LLMD stopped it when he stopped all ABX, pending further testing results.
Wondering if I should consider restarting the Nystatin? I definitely don't want yeast to get worse than it is. But, don't know if Nystatin would even be the right thing to take with this particular test finding.
Just fearing that my doctors may be overlooking the obvious with this as they seem to be more focused at this time with getting me removed from the source of the mold, my house.
We are working getting me out of here. Now, waiting for return calls from realtors on rental properties that hubby has been inspecting as options.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Wow...I just kind of had a revelation while you guys were mentioning nystatin.
Exactly 1 year ago, when I was first diagnosed with chronic lyme, my LLMD put me on Biaxin and Nystatin. I became so ill so quickly that I ended up in the ER. I only lasted 10 days on the protocol. I always assumed that it was my reaction or herx from the biaxin, but it could have very well been because I was hitting fungal or mold related infections with the nystatin. I haven't been able to tolerate any conventional treatments since. It's been a year of struggling just to stay out of the ER. I can't detox, and can't tolerate anything that goes after infection. My organs can't handle it.
I do have an Igenex postive on my IgG for lyme, but it was my only positive and it wasn't CDC or a very "strong" positive. My mold testing on the IgG panel actually came back stronger. My doctor only chose 7 molds to test for, but out of the 7, I had a couple of really strong positives:
Does anyone know anything about these particular molds, what they can cause, where they can be found, or if nystatin goes after them?
Thank you again for this post you guys...it's eye opening and quite mind boggling. It's so odd how my diagnosis of mold poisoning/toxicity/exposure came at the EXACT time this thread popped up!
Jam...I'm still working on that email to you My cognitive symptoms are so awful, it takes me forever to type anything out...and what I'm typing to you is a practically a novel!
Hope you all are well.
Posts: 710 | From West Coast | Registered: May 2008
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quote:Originally posted by jam338: ORGANIC ANTIBACTERIAL CLEANING PRODUCT: BENEFACT
R62, thanks for link earlier on the BENEFACT, I totally missed that I think! Thank you as I didn't have a source for where to get it. I think one my doctors might be looking into resource linking it available on her website.
I found only 3 links for it online, the one you gave looks maybe to be the cheapest, especially with it on sale until May 17th. The small 4 oz pump bottle size is 50% and is $3.99. The gallon size is on sale for $39.99. Since it says use full strength, it will take a lot of it, ugh. I wonder how much it will take to do an entire 2,800 sq ft house?? http://householdtraditions.com/benefect.htm
My doctor said use Benefact. One of the DVDs or you tube clips we watched says use PINKROBIAL soap, and another talked about a Fosters antibacterial product. There has been a few different ones mentioned, mostly chemical of course.
I am reasonably sure the last 2 are likely chemically laden products which may be ok in househoulds without chronic illness/compromised immune systems. But not for us with this disease.
I think go with the BENEFACT, a natural substance of Thyme Oil, as recommended by one of my environmental docs.
She says anyone with chronic illness should not be exposed to chemicals. No one should, but especially not us.
Not sure what is in them or how they compare cost wise to the BENEFACT (thyme oil); but both are organic options.
I love Benefect. I use it to clean the bathrooms. It smells so good. I didnt know it also was good for mold.
With Tropical Traditions.. if you can locate a local co-op, you can save lots of money and get at wholesale. Maybe you can create one? They have other nice items as well. I have a 5 gallon container of their coconut oil here.
I didnt think to use it in our shower that get mold.. my dh cleans it because of the scrunning required.. I'll give him the benefect next time.. and thinking to try out the product link you have here. Thanks:-)
As for how much.. ??? I purchase by the gallon because I am part of that buyers club and get it cheaper that way.
Posts: 861 | From USA | Registered: Dec 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Great post.
I wonder if those of us who have the HLA genotype would get accurate test results with mold testing?
I ask because theoretically we don't make enough antibodies to remove mycotoxins effeciently. I wonder if these are the same antibodies that are used for testing? I assume they are but don't know for sure.
If they are, does this mean that even if we have low antibodies, we could still have lots of mycotoxins in our system?
I have yet to find an answer to this question. I'd sure appreciate any thoughts on this.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Jam338 said:
quote: Can candida albican be a mold or is this likely to be an add on test panel to check standard yeast levels?
Candida albicans is included in most fungus/mold panels because Candida is actually a fungus. All yeast are a form of fungus and all mold is a form of fungus. Antifungal drugs are effective against Candida because Candida is actually a fungus.
posted
TerryK, maybe others can answer more for you, but here is what my doctors have said thusfar. I am not sure if any of this clearly answers your questions though.
My doctors have said those with the genetic susceptibility factors will be the ones who have the highest mold risk factors.
They believe this so strongly that all of said they have no doubt I will test positive for the genetic risk factors just based on my high antibody response levels to molds.
None of my doctors mentioned any concerns about genetic susceptibility factors adversely affecting accuracy of testing. That of course does not mean that it doesn't. It just means that I really think that one of the three would have mentioned it if it did. But, you know how that goes too, sometimes if you don't ask the right question, then you don't receive the information.
My LLMD says the genetic susceptibility factor is very useful to test for whether or not one suspects mold as part of the problem.
He says in his experience he has learned it is a good indicator of what to expect with lyme treatment effectiveness response. And, he feels it is useful guide in pacing treatment process.
I think he may only do it for lyme patients who are the most severe and bedridden, but not sure.
He further said it helps him in gauging the limit line factors of the patient's capacity to detox die-off; critical to know for patients at my level.
If I correctly understood staff's explanation, the mycotoxin test (C3a/C4a) is an entirely different panel from the mold antibody panel. Though both are through LabCorp.
I think (but don't know) the C3a/C4a LabCorp panel is a customized panel originally developed for Ritchie Shoemaker, M.D.
However, Dr. Shoemaker gives very specific guidance on his website and in his book (Mold Warriors) and says be sure to tell LabCorp staff to send your C3a/C4a test only to the testing lab at National Jewish Hospital in Denver. Apparently they have a choice of testing labs to ship to.
Dr. Shoemaker says the Denver lab is the most accurate. I recall my LLMD's office staff mentioning something about the Cambridge lab, which I think is the other lab(?)
There is further neurotoxin/biotoxin/mycotoxin illness info on Dr. Shoemaker's websites below. I think the first one is the one with lab testing info, but not sure, it has been awhile since I was on either:
I will verify with my LLMD about which lab to send my blood draw and update this thread when I get an answer.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Dear jam338, Thank you so much for all of this terrific information! I am sure we have mold issues. We live by a river, and often have flooding and tornadoes. My father says "There is no such thing as toxic mold, and if so, we do not have it." In January, we had to go stay at my grandparents' former apartment. There was an ice storm that knocked out the power for several days.
I actually did not feel like passing out as much while there after a little while. I know I have a raging case of Candida, which makes me highly sensitive to mold. My brother did not have near the cases of Bronchitis I had. I used to get it every year, and sometimes twice. Mom and Dad had a ranch home in a nearby town at the time he was an infant.
I was in the house in the womb since it was built in 1978. My grandfather always said he thought the house was making us all ill. I honestly believe there is truth in it. When I was at the apartment, I felt better. Two days after coming home, I began feeling exhausted and weird all over again. The stomach issues were still there, though.
We also had a rabbit with Pasteurella. This particular parasite needs a humid environment. Our poor bunny was down in this basement, where the humidity is very high. At times when it rained, the rabbit's cage would have condensation on the walls. Despite our best efforts in keeping the cage cleaned out and giving him Baytril, as well as using a dehumidifier, the parasite took over.
I am afraid if I do not find a source of income, I will die! One of my classmates in college lost a kidney due to being exposed to mold in her workplace. She went to a toxicologist for treatment. I desperately need to move out. I tried to explain it to my parents, but they refuse to listen. Affordability is a major obstacle, but they are also stubborn.
We all have sinus and allergy issues. This may explain why no allergy medication ever has worked for me. I also suffer from migraines. I really need to find a way to get out of here! I have done research on toxic molds, and know they are linked to lung cancer, stomach ulcers, and many other conditions. Does anyone have any ideas on how to get help?
emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Jam338,
The lab that my doctor used had a 0-4 category scale. The categories were 0,1,2,3,4.
But category 3 on my lab report is anything over 10 but under 30.
And a category 4 is anything over 30.00
So to me, a 45.5 for Candida albicans seems high. Even based upon Esoterix's scale your score of 45.5 is rather high.
My score was a 100 for Candida and my doctor wants me to start treatment as soon as possible. Diflucan (fluconazole) is the antifungal that my doctor recommended. But I believe Nystatin also kills Candida albicans.
But in Dr. Constantini's book,"FungalBionics", he didn't seem to worry too much about Candida albicans. Instead he seemed to consider other fungal infections such as Aspergillus, Penicillium, Fusarium etc. and their mycotoxins to be much more harmful to people's health.
But I am going to try and get my Candida antibody levels to come down.
Posts: 1223 | From U.S.A | Registered: Jul 2007
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posted
Dear Jin, oh my goodness, I am sorry for your situation honey. Wish I had answers for you. I have a few thoughts to share for your consideration, but no real answers. Just tips to help with making your existing situation as healthy as possible until you can afford to move.
Yes, toxic mold has very serious health risks, especially long term exposures like I have had. My doctors say it can cause permanent brain damage, liver cancer, and kidney cancer, along other very serious organ problems.
Needless to say, I am terrified about what damage mold may have done to me that can't be changed.
Jin, you are wise in doing your research and becoming aware of your risks, kudos to you for that!
Awareness is always the first step to Action!
Try to get your immediate living space (your bedroom) as safe as you can get it.
There are things you can do to at lessen some of your exposure. 20-Mule Team Borax (any Walmart) is cheap and will kill some of the mold. Carefully wash down your walls, floors, ceiling (if possible).
Make sure your room is as clean as possible, free of dust. Dust is like a magnet for mold spores.
There are small portable HEPA filters you buy for a small area. Austin Air has a Health Mate Jr, for around $300, but Costco has HEPA filters for 1/3 or less of that which would probably work fine for your room. Even if you could only get a small $40 unit, anything that cleans the air quality of any mold spores is better than nothing.
If your dad doesn't have awareness about mold, then he may not be regularly changing the household heater/air conditioning filters. Not good, and that air is circulating all throughout the house, including your bedroom.
Not sure what the temperatures are like where you are, but if you can close off the vent to your bedroom. Put a piece of plastic over the vent. You can either tape it using blue painters tape so it doesn't damage the paint surface or remove the vent plate and put a piece of plastic across it and replace the vent to securely hold the plastic in place.
The bedroom is the one room where most people spend the most time (hours of sleep). Less time is spent in any other room. So, the bedroom is the one single room we should be most fussy about cleanliness. However, since no one usually sees our bedrooms they can be the rooms that are least attended to.
Obviously, you know you need to be in a healthier living environment. Just do what you can for now to make your current living environment as healthy as possible for you.
Hopefully, you can convince your brother to do the same in his room.
I was going to suggest considering the Citrisafe organic candle option ($100) to kill mold in your room, but I don't yet know enough about it. It can be ordered online.
But, here is the problem I have been told. Yes, there are organic things that research shows kills mold, but dead mold spores behind walls/floors, ceilings still needs to be cut out.
Dead mold spores are dangerous and produce health risks too. I don't yet know if they are as dangerous or maybe even more dangerous. I am clueless there at this point.
The advantage in killing the mold is it stops it from spreading and becoming a GROWING problem. Killing it will at least contain it, stop the spread of it, but you still have to figure out how to get it out.
That part isn't easy and it is very expensive process as means removing sheetrock, and sometimes replacing affected wall studs.
That is why some people who learn they have a mold problem just paint over it and move. An unspecting new home owner or renter is clueless that a mold problem lurks behind the walls, and many home inspectors won't detect it unless there are visible clues that cause them to go out to the truck for the inspection tools.
Jin, please stay vigilant about your mold situation. Long term mold exposure, especially if you might have the mold genetic susceptibility factor, is very bad.
My doctors tell me that eventually those with the mold genetic susceptibility factor who are exposed long term to hidden or visible mold have a high risk of ending up like me, bedridden.
As hard as the many challenges are to deal with assesing and resolve mold factors, those with the genetic factors...you have no choice. You have to do it. Address it or remove yourself from the mold exposure now. I wish I had known that or someone would have told me that 5 years ago before I got like this.
One of my doctors who has dealt with many lyme disease (with and without mold sickness) patients said her experience is that anyone with lyme disease who is bedridden very likely has undetected environmental problems (usually mold but can be other things with chemicals in constuction materials, etc) n their home.
[ 05-12-2009, 05:52 PM: Message edited by: jam338 ]
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Here are a few interesting studies about toxic mold, mold mycotoxins and the potential implication they have in the development of disease.
Can low level exposure to the mold mycotoxin, Ochratoxin-A, cause Parkinson's Disease?
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Jam, Thanks for your thoughtful response. I've looked through Dr. S's work but have never seen anything that addresses the HLA testing in conjunction with mold antibody testing. As far as I can tell, he doesn't test antibodies for mold in people.
This may be one area that he is missing and possibly why some people with the dreaded genotype don't get well??
I had testing done 3 years ago at Immunosciences Lab before they stopped doing testing. These were ELISA tests for IgG, IgM, IgA and IgE for a number of molds. I had antibodies to every mold but they were within reference range which means they were not considered abnormal.
I do have the worst HLA genotype for mold, borrelia and spider bite toxins. Really makes me wonder if antibodies would be a lot higher if I could make antibodies to the mycotoxins.
I do have mold in my house so all of the info you've provided is helpful.
My husband and I worked very carefully (after doing considerable research) on killing the mold. The problem is that while killing the mold will stop production of more mycotoxin producing mold, it does not get rid of the mycotoxins that are left behind.
My muscle tester had me use essential oils and diffusers (with motors on them) to get rid of mycotoxins. It was not cheap and it did take a long time because I had 4 different combinations of essential oils to use and some of them had to be diffused for days. This had to be done in 4 different areas plus we had to spray stuff in vents in one bathroom for days.
I'm getting ready to do mold testing now to see how well it all worked. I may use bejoy's solution of ozone if I have further work to do although my research indicated that ozone wasn't effective. It appears to have been effective for her though so it's worth considering.
One more note: I got the weird black fungus on my tongue from tindamax. My doctor put me on an anti-fungal (sporonax). Interestingly, the only time I've been able to lose weight was on prescription anti-fungals. No amount of calorie restriction has helped. I've lost 4 lbs since I started this anti-fungal. Hopefully that will continue.
Seems odd though because if mycotoxins cause weight gain then you would think killing the fungus would cause weight gain due to increased mycotoxins. sigh It's hard to reconcile it all logically it seems or maybe I'm missing something.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
OH NOOOOOOOOOOOOOOOOOOOOOOOO.......
My hubby and I did TWO mold plates so far.... we have mold growing on one of them!!!!
We tested one in the living room, which came back clean... but the one we tested the air/heater fan with has mold spots. Aughhhh.... Not sure what that means now. It means there's obviously something growing in the air/heater ducts or something. I was hoping we'd have no mold issues because our landlords are LESS than helpful with other issues... and I can just guess how they'll take this news.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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I have read online about the organic oil diffusing, but can't remember the site. I think I may have saved the information somewhere. The problem is with my cognitive issues is trying to find things later.
If you can actually see mold, you can estimate that there is at least 10 times or more mold on the other side of the wall where you can't see.
I think (but not sure)DrS's test on C3a/C4a tests mycotoxin levels. Not sure whether he tests genetic markers etc. Not yet done with his book, but it has been strongly recommended by all my mold literate doctors.
Terry, regarding the weight factors you mentioned, have you had your MSH levels checked? Various things can lower it, including mold...probably lyme too. If your level is under 35, then it could be a factor in affecting weight. It is written about in Dr. James Schaller's Mold book.
Hmmm, wonder if the black tongue Tindamax factor might not be related in some way. Could be something that others who have experienced it might want to look further into about evaluating your home/work environment about mold.
I have never been on Tindamax so can't say. I am a long way from being "lyme treatment ready", but hope I remember that in case they ever want to put me on Tindamax.
Terry, I really hope you pursue the resolution about mold. If you know your house has it, it has to be addressed. Especially if you have the genetic risk markers.
PLEASE DO NOT WAIT UNTIL YOU ARE LIKE ME. My life is in a huge crisis now. Not only do I have the health crisis, and lost ability to have independent living capability, but now also have a huge crisis about my living environment.
Please, do all that you can to resolve the mold issue before you get to this stage of disability.
You are now armed with lots of guidance information on this thread about next step considerations.
Terry, you have done your homework well. You already know that you can't just kill the mold. You have to get it out.
Dead mold still has mycotoxin factors, especially dangerous for those of us with genetic risk factors.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
WHEN MOLD REMEDIATION MAY NOT BE AN OPTION:
If mold remediation is not possible for whatever reason(s) consider purchasing an effective portable HEPA air filtering unit that removes mold spores from the air.
Make sure you get one large enough to do the job. I can't recall the sq. ft. guidance factors about that, but I read it online before we purchased ours. That is why we bought 2 (one for each floor).
The other thing we are going to do is get one of the air recuperator systems professionally installed in our home. It allows you to dial in a balance of "positive/negative" air pressure exchange.
The goal is to have a negative pressure system inside your house. It may be possible to just buy a negative pressure air exchanger or a commercial air scrubber.
I saw a YouTube clip where a guy with some skills and knowledge had even made his own air scrubber system in his basement and then ran the piping ducts up and somehow adjoined into all into his air duct system. Wish I had bookmarked that dang clip, sorry.
I still have much more to learn about what to do regarding post remediation protection measures.
The whole issue of the HVAC system is a HUGE consideration if you know you have mold in your house. If it is in your house, guess what? It is also probably all in your HVAC system. That is whole other post just on all that.
You have to be very careful about what you use to clean it. Most HVAC duct cleaners are not mold literate, though they will say that they are.
The professionals don't agree whether to clean or not clean the HVAC ducts. Chemicals can initiate a degradation of HVAC duct system. But, IF you have mold in there is a problem.
You can spend thousands on mold remediation of the water damage source areas. Flip on the HVAC system after the repairs are done, and wham you just put mold spores back into your living environment again.
I am thinking (but don't yet know) that might be addressable by renting commercial high powered air scrubbers. Turn them on high, turn the HVAC system on, and the mold affected person not return to the house for a period of time, maybe 3-4 days or a week. Just not sure yet on that part of things.
My doctors have told me that we will have to have a special air system wherever I live for the rest of my life. That is because of the genetic risk factors, the long term mold exposure, and the level of sickness it has caused/contributed to.
However, please note the recuperator air system doesn't treat or remediate mold at all. What it does is changes the air pressure inside your house to negative and forces air pressure towards the wall. That's it. It keeps more mold spores in the wall so they aren't released into your breathing air space.
In other words, it only lessens things. It does not resolve things. The only way to fully resolve mold is cut out it and remove it.
But, there will always be some spores that get missed. With ten thousand mold spores that fit onto the head of a pin, logic dictates there will be some that get missed in remediation.
There are many failed remediations where people get sick again and can not live in their house after having paid thousands of dollars to resolve mold.
One of my doctors just moved out of her house after full mold remediation 3 times. Her house is safe enough for someone who does not have the genetic risk marker to live in. It is not safe for her to live.
She said if she had to do it again, she would have just moved to start with and not have gone into thousands of dollars in debt for a house she can't even live in.
In fact that is what she recommended to us; MOVE. Maybe we should. We may ultimately have regrets that we didn't follow her advice.
I am not well enough to handle a full house move. The economy is horrible. My house is now worth half of what it was 2-3 years, ago.
Unless we buy a new house (something we can not afford to do), moving could result in only changing addresses and still be in a water damaged house or apt. So, the problem would not be resolved.
So, at this point, it seems that the thing for my husband and I to do is:
1-remediate as extensively as we can
2-get the air recuperator system to deal with any residual mold
3-perhaps consider the ozone treatment unit that Bejoy has kindly shared she is using finding is effective in her situation. While ozone shocking is debated among the mold world industry, so is all the rest of it. Do your own homework and make your decisions.
We think Bejoy has a good option that we will probably do after remediation. The outdoor box containment shock ozone treatments of household goods to help keep spore counts down.
Some remediators and insurance companies say "throw all your household goods away; start over". Understandably their recommendations are liability protection oriented, though perhaps not practical, and may not be necessary.
There is no way of knowing for sure. You can do "tape lift" sample testing but that only tests 3" of an area.
Mold spores collect into dust which then falls to the surface of drapes, furniture, carpet. You can't lab test every square inch of your living environment, so there is always a chance mold didn't fall to the area you tested.
But, you can HEPA vacuum everything as well as you can, and thoroughly and carefully wash down walls, furniture, floors with 20-Mule Team Borax or a research tested and known mold killer, which is not the common ones you see advertised on TV.
I am still learning on the products to use. Experts don't agree on that either. My theory is when experts don't agree on new things look to the old tried and true things that have been used for many years and known to be effective.
All the patentable product research controversy can get in the way of really getting the information you need.
I wish I had known then what I know now. Wow, how often have we all said that about something in our lives?
Don't let one of those times that you will be saying it be about not having properly assessed or addressed mold risks.
If you wait until you reach my level of disability, trust me, your life and your health may be totally wrecked. Mine is. But, I am determined to not go through this without there being a lesson in it for others. Too late for me, but maybe not for you.
Now I am trying to manage a crisis of this magnitude (my living environment) when I can't even stand up long enough to brush my teeth so how am I going to be able to do anything else?
Dangerous mold can cause PERMANENT brain damage, liver cancer, and kidney cance and other really bad things. This is not anything to not take serious. This is not about a little inconvenient mildew. It is TOXIC mold that poisons your entire body and damages your organs.
This is not an issue of should you do it. It is an issue of HOW you do it and what process you will you follow to do it; or, risk living with the possible very dire consequences.
My horror story should be enough to motivate reasonable thinking people into action to protect you, your family, your children from harm.
If you don't do it for anyone else, do it for your children's sake.
There have been 2 posts on this thread from kids about their parents not knowing, not caring, not making good decisions about mold risk protections.
Don't become one of those parents. Your kids deserve to live in a healthy living environment. It is your responsibility as a parent to provide it for them.
Please think about this when you kiss your kids and tuck them in tonight. I want you to be able to dance at every wedding, enjoy every anniversary, holiday...all of it. Things I can no longer do. Why? Toxic mold. It could have been prevented. It wasn't. We didn't know. But, now since you are reading this thread, you do.
I truly hope everyone will carefully think about this and do what is best for you and your family.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Oh my god!! This issue about Lyme is amazing.
I have been sick since 04,diagnossed with lyme in 06 and been on different treatments since. doing so much better. actually feel like i am going to live.
recently i had a friend question why i was never allergy tested. spoke with aN ENT and he sgreed.
i was grossly positive to 12 of the 20 molds they tested me for. not much else. my candida mold went from 9mm(normal positive) to 50x60mm in 3 days-itblistered and was oozy. thought i had a cellulitis.
so i started allergy shots at 1:500 dilution. i developed bad respiratoty distress. tight wheezing. my arm was on fire. long story short-i've restarted my shots-once a week at a 1:5000 dilution. my ent says if this doesn't work he will have to concult out of state.
i find it very interesting that these threads about mold have shown up. things always happen for a reason,
great info. thanks a lot!!!
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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posted
Disturbedme, don't panic just yet, you aren't sure what type of mold it is! It might not be a dangerous mold.
Most testing instructions I have read say to test with HVAC on. Some say do 2 tests, w/fan on and then off.
I think maybe they are trying to see if it is in the HVAC duct system. That could be more significant in housing like apts if there is a shared HVAC system. Something coming in from outside of your own apartment.
That said, unless you get the plate analyzed at the lab you won't know what species of mold it is or whether or not it is dangerous toxic mold. Can you describe what the mold looks like? Hard to do I know.
For example, is it green fuzzy with an outside ivory colored outter ring, or is it white with tourquoise inside?
As nearly as I can tell from looking at mold plate pictures online those 2 MIGHT be aspergillus and pencillium molds; caused by water damage somewhere.
Those are the 2 primary ones that I remember from our 1st plate testing, but that set of tests were not lab analyzed. We had other types as well, but those 2 seemed to have the largest colonies.
Whatever they are, they greatly concerned my doctor who wanted them lab analyzed. And, my penicillium and aspergillus mold antibodies are very high, along with several others.
Our 2nd set of plates are at the lab for analysis now, so I will know exactly what it is in a week or so.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Jam - I have a picture for you. They are green inside with white/ivory outside ring. This plate was from the heater/air vent/duct fan....
Here's a picture. We wrote fan on a piece of paper and sat the plate on top of it the night we did it so we wouldn't get the two plates mixed up. You'll see three mold dots. The harder to see one is, right now, just a white color on the letter F:
Should we have them analyzed? We were going to send it in to have them analyze what kind of mold it is.
I was hoping we had no mold in our apartment. We went to Home Depot and got another two test kits so we can now test the bathroom and kitchen and see what those come back with. The plate we put in the living room came up clean with no mold growth on it still.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Disturbed- that isn't bad at all. When ours came back for our kitchen and storage room, the plate was almost completely filled with mold. I'd really suggest that you get the mold plates for your bathrooms and kitchen.
Posts: 710 | From West Coast | Registered: May 2008
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Though impossible to tell from just a picture, it looks like the green mold is the same as in my tests, except that I had more numbers of colonies (more spots of growth).
The white spot could be the start of the same white mold I had as well.
That said, there is not a high concentration of any spores on the plate. That is good, but if it is a dangerous toxic mold species, even one spore can make a person with genetic risk factors very sick.
When did you do the test? Did you incubate the dish? Meaning, did you wrap it in foil (dark) and put in a drawer or cabinet? It needs to be incubated for 3-5 days. We did ours for 4 days.
The incubation period gives it time to grow out. If you did not sufficiently incubate then, you could have more that haven't yet bloomed out. And, of course the ones there would be bigger after sufficient incubation period.
The living room would typically be the least likely room to have mold growth. That room does not have a direct water source (plumbing)coming into the apartment. But, living rooms can have window leaks (rain) and ceiling leaks from the roof (rain).
The kitchen and the bathroom have direct water sources (plumbing), and are the most probable areas to suspect when evaluating for water damage. Also, the drip pan under the refrigerator can grow mold, especially if there has ever been water damage in the kitchen.
The spores in your living room could have been spread from the kitchen or the bathroom. You won't know for sure unless you test those areas.
Don't expect that your landlord is going to be supportive or care. They may already know. If water damage happened before you lived in the apartment, they know. They had to repair it.
That doesn't mean that they know the dangers about toxic mold. Most people don't.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Emla999, thanks for the feedback on the Candida factors.
My doctors have responded consistent with what you said regarding Dr. Constantini's book,"FungalBionics" where he didn't seem to worry too much about Candida albicans. Instead he seemed to consider other fungal infections such as Aspergillus, Penicillium, Fusarium etc. and their mycotoxins to be much more harmful to people's health."
My doctors (including 2 naturopaths), thusfar, seem to look it as "we have bigger fish to fry to here". I don't get that. All of us know that yeast can cause lots of problems and contribute to gut dysbiosis/leaky gut.
It just feels to me that I should be taking something for this so it doesn't get worse.
They aren't treating the yeast, but say I need IV supplements because leaky gut is not allowing proper absorption of nutrients.
It only makes sense to me to treat the yeast, then maybe the leaky gut might not be as severe.
There are about 5 doctors total involved in my care; 2 are naturopaths. Yet, none of them are prioritizing the yeast.
I need help in understanding how much of a factor Candida is regarding gut dysbiosis/leaky gut, which has a direct impact on our immune system and its ability to heal us from any illness, whether lyme, virals, coinfections, mold, heavy metals, etc.
To me, it seems that this Candida thing should be a high priority to fix. How can the rest possibly get better without fixing it? It is like having a hole in the bottom of the boat and trying to bail it out with a bucket while it keeps filling back up again.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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