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
[ 05-11-2009, 06:40 PM: Message edited by: jam338 ]
Posted by jam338 (Member # 14002) on :
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.
Posted by jam338 (Member # 14002) on :
Regarding the Esoterix Mold Test:
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.
Posted by R62 (Member # 18531) on :
Thanks for this thread, jam.
Posted by bejoy (Member # 11129) on :
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.
Posted by jam338 (Member # 14002) on :
R62, welcome:)
Emla999, thanks for the link on biotoxins/mold.
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.
Posted by LittleLymie19 (Member # 15610) on :
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...
Posted by emla999/Lyme (Member # 12606) on :
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.
[ 05-09-2009, 02:00 AM: Message edited by: emla999/Lyme ]
Posted by jam338 (Member # 14002) on :
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.
Posted by jam338 (Member # 14002) on :
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.
[ 05-08-2009, 09:15 PM: Message edited by: jam338 ]
Posted by LittleLymie19 (Member # 15610) on :
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 Posted by R62 (Member # 18531) on :
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.
Maybe all brown algaes?
Posted by R62 (Member # 18531) on :
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?????
Posted by jam338 (Member # 14002) on :
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.
Posted by emla999/Lyme (Member # 12606) on :
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.
Oh, and Jam338, if you don't mind me asking, what kind of clay do you take?
Posted by CD57 (Member # 11749) on :
This is great. Can we sticky this link to the top?
Posted by jam338 (Member # 14002) on :
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.
Posted by bettyg (Member # 6147) on :
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. Posted by emla999/Lyme (Member # 12606) on :
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!!!!!
Posted by emla999/Lyme (Member # 12606) on :
Professor Dr. Homero Fonseca's website about mold mycotoxins.
I wish my Spanish was better!
Posted by disturbedme (Member # 12346) on :
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...
Posted by jam338 (Member # 14002) on :
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.
Posted by jam338 (Member # 14002) on :
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.
Posted by jam338 (Member # 14002) on :
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?
Posted by jam338 (Member # 14002) on :
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.
Posted by jam338 (Member # 14002) on :
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.
Posted by jam338 (Member # 14002) on :
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.
Posted by bejoy (Member # 11129) on :
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.
Posted by jam338 (Member # 14002) on :
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 ]
Posted by jam338 (Member # 14002) on :
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.
Posted by jam338 (Member # 14002) on :
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.
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.
Posted by bejoy (Member # 11129) on :
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.
Posted by jam338 (Member # 14002) on :
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?
Posted by jam338 (Member # 14002) on :
I just read this on website and recall the microbiologists on the DVDs saying similar:
"Ten thousand mold spores can fit onto the head of a pin."
"In one square inch of flowering mold there can be anywhere from 1-5 million!!!"
So, you can imagine how hard mold is to get rid of once you get it. It multiplies faster than dang rabbits.
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.
Posted by jam338 (Member # 14002) on :
HYDROXY B12 daily injections help:
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.
Posted by cantgiveupyet (Member # 8165) on :
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?
Posted by jam338 (Member # 14002) on :
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.
Posted by jam338 (Member # 14002) on :
WHAT YOU SHOULD KNOW ABOUT ROOFS:
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.
Posted by jam338 (Member # 14002) on :
WHAT YOU SHOULD KNOW ABOUT VACUUMS:
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.
Posted by disturbedme (Member # 12346) on :
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
Posted by jam338 (Member # 14002) on :
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.
Posted by lpkayak (Member # 5230) on :
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.
Posted by CD57 (Member # 11749) on :
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.
Posted by jam338 (Member # 14002) on :
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.
Posted by jam338 (Member # 14002) on :
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 ]
Posted by jam338 (Member # 14002) on :
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.
Posted by jam338 (Member # 14002) on :
HEPA FILTER INFO: Austin Air $449 each 5 yr warranty
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.
Posted by jam338 (Member # 14002) on :
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.
Posted by bettyg (Member # 6147) on :
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! *************************
Posted by emla999/Lyme (Member # 12606) on :
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.
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.
Posted by LittleLymie19 (Member # 15610) on :
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.
Posted by R62 (Member # 18531) on :
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.
Posted by TerryK (Member # 8552) on :
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
Posted by emla999/Lyme (Member # 12606) on :
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.
""Yeast" is the term for a fungus that exists as a single-celled organism rather than as hyphae."
"The term "yeast" is of no taxonomic significance. It is useful only to describe a morphological form of a fungus."
So, when someone tells you that you have a yeast infection you really have a specific kind of fungal infection.
[ 05-11-2009, 08:57 PM: Message edited by: emla999/Lyme ]
Posted by jam338 (Member # 14002) on :
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.
Posted by Jin (Member # 11735) on :
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?
Sincerely, Jin
Posted by emla999/Lyme (Member # 12606) on :
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.
Posted by jam338 (Member # 14002) on :
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 ]
Posted by emla999/Lyme (Member # 12606) on :
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?
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
Posted by disturbedme (Member # 12346) on :
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.
Posted by jam338 (Member # 14002) on :
TerryK,
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.
Posted by jam338 (Member # 14002) on :
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.
Posted by leogrl54 (Member # 10770) on :
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!!!
Posted by jam338 (Member # 14002) on :
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.
Posted by disturbedme (Member # 12346) on :
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.
Posted by LittleLymie19 (Member # 15610) on :
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.
Posted by jam338 (Member # 14002) on :
Disturbedme,
I am really glad you are testing!!
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.
Posted by jam338 (Member # 14002) on :
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.
Posted by jam338 (Member # 14002) on :
p.s. Disturbedme, when sending to the lab for analysis, we didn't do the incubation thing for that set of plates. We just sent to lab. They will then incubate it according to their specific lab protocols and then analzye it for species. It usually takes 7-10 days for them to grow it out and then analyze.
I only know about the pre-lab incubation process because that is what my LLMD had me do so he could see what was growing in my living environment.
There is one lab who has mold plate pictures on their website. With some careful analysis comparison it can give you some idea about species types, but in no way should substitute for a definitive lab analysis to correctly identify species.
I agree with you. If a leaky gut is causing you to not absorb nutrients then it would seem to me that you would rather treat what's causing your leaky gut to begin with.
And since you have elevated IgG antibodies to Candida I don't understand why your doctors aren't treating you for Candida.
Did you have elevated IgG antibodies to any other fungi/molds such as Aspergillus or Penicillium?
If so, then you might talk your doctor into prescribing you a broad spectrum anti-fungal drug such as Voriconazole or Itraconazole. Those drugs can kill several molds/fungi/yeast such as Aspergillus, Penicillium and Candida all at the same time.
I do know that molds such as Aspergillus Stachybotrys and Penicillium are considered to be more harmful to your health than is Candida but it still seems to me that your doctors should be addressing the Candida issue as well.
Posted by emla999/Lyme (Member # 12606) on :
Also, for Candida albicans you might want to try the herbal compound Kolorex.
Kolorex is made from the herb Horopito and it contains anethole/polygodial. Polygodial is just as effective at killing Candida albicans than the anti-fungal drug Amphotericin B.
Kolorex is also supposed to be effective against other fungi as well.
Posted by jam338 (Member # 14002) on :
Emla thank you so much for all the info to help me with the Candida issue!! So kind of you to post all the links to help me, thanks.
I definitely have to figure out how to treat leaky gut. Would very much appreciate any links you or anyone has on healing leaky gut.
I don't know why my doctors are not all over the leaky gut/candida thing. That seems huge to me to get under control.
They seem more concerned about the severity of mold. I understand their concern after reading all the health dangers about mold.
I still don't know about Stachy yet; that lab is being run now. Lab was backlogged on Stachy tests.
I had very high antibodies to most of the others, including Aspergillus and Penicillium.
Posted by Jin (Member # 11735) on :
Dear jam338, Thank you for the tips! I know my father will not buy the items, but maybe I could if I get the online job I have been trying to obtain. Moving to a new place would be best, but I doubt the government will help. I will contact the local housing authority and see if there is anything they could do. Mom and Dad are so determined to stay here no matter what, but being 26 years-old and suffering like this is miserable.
The truth about mold is terrifying. So many people just close their eyes and cover their ears. Your doctor is correct. Stachybotrys, Penicillium, and Aspergillus are the primary ones to watch for. "Forensic Files" had an episode about it. A family down in Georgia lost their home to toxic mold.
Two of the three family members were debilitated completely by it. The young boy became handicapped due to the exposure, and his father experienced brain damage that cannot be reversed. His memory impairment was so extensive, there was no way the man could ever return to work. Happily, the family did win a lawsuit against the insurance company. A jury awarded them many millions of dollars.
I fear my damage will be as bad as yours if I do not get out of here. Thank you for the compliments! I research something all of the time. Awareness is extremely important. Honestly, it never seems to matter how much research I do on anything, because I am written off as a hypochondriac or OCD by relatives.
Dad is one of those people who automatically knows everything. You know how those people are. Talking to them is like talking to a brick wall, except the wall at least listens. My parents' memories are poor, and I cannot stand to lose my intellect. It is all I have left!
My bedroom is loaded with dust. Part of this is due to the bunny, but he has to stay put. Borax is certainly an option. The ceiling in the living room is in bad shape. We had a strange teal-colored mold growing there. Mom and Dad think Kilz destroyed it all, but I doubt it.
We had a leaky roof, and there is no telling what all is there. It appears to be showing through again. Our bathroom is another hot spot. The shower and above it tend to have a lot of mold. Even if it is not toxic, I still am allergic. Also, having severe Candida overgrowth further complicates things. According to my research, it is impossible to recover from Candida while living in a home with mold.
Our downstairs bathroom has had mold under the sink area. However, the Kilz seemed to prevent it from returning. The main area of the basement concerns me, because underneath the carpet, it "sweats". Whenever it rains, the concrete underneath the carpet creates a moldy odor. I suspect there is leaking in the window or near it as well, possibly even behind the wood panels.
My room may have mold in it due to the window sliding down all of the time until Dad nailed it shut. On top of tornadoes and floods, we also have earthquakes. Lucky us, right? Although there does not seem to be any odor, the dust is still a concern since I am allergic. Since they have lived here, we never had the air grates cleaned. Mom and Dad say it does not make a difference, but that is not true.
We had a miniature vaccuum with a HEPA filter, but it no longer works. I will keep the air purification systems you recommended in mind. There are a couple of Oreck Air Purifiers we were using for a while, but need to find out which filters they take. I do think Dad is probably not changing the filter as much as he should. It is bad enough everything smells like smoke from his cancer sticks.
Having Multiple Chemical Sensitivity makes a major problem of living here. I probably spend most of my time in the kitchen, since I do not always sleep as much. I do believe we should take better care of our bedrooms. Getting rid of dust and dust mites will help tremendously. Spending time in the basement makes me drowsy, and I used to believe it was the EMFs from the computer. Now I realize the mold may be the actual trouble.
My brother is fortunate, he does not live here. He moved out many years ago. We are more than 7 years apart in age. Doing whatever I can to clean up my room is all I can do for now. If I can find out about the filters and get replacements for the Oreck units, they can go in the two places I spend the most time.
Citrisafe sounds interesting. That is true about the mold. Dead spores are just as dangerous. It takes only a single spore to generate a new colony. The next thing you know, there are a trillion new colonies. We had mold growing in our toilets for a while, and that is how I learned about that. Research is your only source of information. Professionals who clean up the mold must wear hazmat suits due to the mold being so deadly.
Dead mold spores are equally as toxic as living ones. Breathing any of them in is dangerous. It should be against the law if someone sells a home knowing it contains mold. Do not worry, I will be vigilant. I shall not waiver in my quest for health.
At this point, I am not sure if I have a genetic factor. It would not be a surprise if I do. Have you ever seen a toxicologist? That is where my classmate went. You must be able to clear it out of your system. If you have not been treating Candida, this may play a role.
I understand the environmental sensitivity factors. I have always had MCS. Perfumes, scented lotions, colognes, soaps, new carpeting, leather, cleaners, and even ink in magazines and books bother me. Sometimes they make me dizzy, other times they nauseate me. When they installed the new furnace in February, the smell of the glue came through the grates and made me feel strange. Every little thing seems to irritate my system.
Sincerely, Jin
Posted by TerryK (Member # 8552) on :
Jin, Just want to mention that kilz is only a primer and is used to "kill" stains - not mold.
It will kill nothing. It is recommended that one use a mildew/mold killer if they are present, before using the primer.
[ 05-13-2009, 12:26 PM: Message edited by: TerryK ]
Posted by TerryK (Member # 8552) on :
Hi Jam, Yes, I've had my MSH and leptin measured. MSH is less than 8 and leptin is 3X's normal. The problem is there is no way to increase MSH according to what I've read and been told. It may return to normal after all the factors have been dealt with and mycotoxins are out of the body.
One doctor I consulted with, supposedly a mold expert, also said there is no way to increase MSH because the drug that could be used to do it is not available in the U.S.. He doesn't do anything more than CSM and actos from what I can tell. Not an expert in my view since that is only one step.
Unfortunately, I've been at your level of disability off an on for 20+ years. Long before I had any known exposure to mold. This last major relapse coincided with mold exposure though. I've had some improvmement with lyme treatment but I think the mold issue may be slowing progress way down at this point.
Jam wrote: I think (but not sure)DrS's test on C3a/C4a tests mycotoxin levels.
My understanding is that those are immune system markers - not a measure of mold antibodies.
I have one of Dr. S's mold remediation books but it's not very helpful. He also had a link (not google ads) to a mold professional who was selling info on mold remediation and other mold info. I bought his series and that was helpful.
Just a mention, he states that borax should be mixed with distilled water so that the minerals and other contaminants don't interfere with the mold killing action. Same for TSP (trisodium phosphate). He also has you mix up to 1.5 pounds of borax with 1 gal distilled water for cleaning walls. Makes a paste but is very effective for killing mold.
Not sure if mold on the wall means there is 10 X's more behind the wall. My husband climbed into the attic and looked where the leak had been and the wall had no visible mold. Mold does have tendrils though that grow into the wall which makes it pretty much impossible to kill it once it is inside the wall.
Terry
Posted by jam338 (Member # 14002) on :
TerryK, I remember now you mentioning (and me commenting, duh) about your low MSH on another thread. Brain is like sieve, sorry.
Thanks for the info on mixing the borax, especially about the distilled water. I think hubby and I have not previously taken that part serious enough. More in relationship to my internal protocol regimen where supplements are supposed to mixed with distilled water. That of course has nothing to do with your comment on distilled water. Just saying it made me think about something else that we might need to reconsider about.
Hubby has been just mixing my supplement things with tap water, though the doctor said do with distilled water. Our biggest consideration is there are no minerals in distilled water, and all my lab testing shows I have substantial deficiencies in nutrients and minerals. I eat well so I think that is the leaky gut/candida factor revealing itself.
On the 10x's issue, just saying what all these mold remediation DVDs have consistently said, all by different companies. Interviews with microbiologists, doctors, home inspectors, mold remediators. I have no idea if they are right or now.
In our case, we can not see any visible mold at all. I suppose that is a good thing, but clearly we have mold behind the walls. There is no way my antibodies could be this high without exposure. And the source of my exposure has to be my house because I am bedridden most of the time.
At this stage, I have been focusing most of my learning time on how to test our house. Left the body blood testing to my docs as they seem to know what tests need to be done. I know the names of the blood tests they are doing, but don't yet fully understand each test or what it is for.
As each test is done and results are in, the ensuing discussions with my doctors help me learn more. I will continue to share as I learn from them.
Thusfare, the only mold related body testing done is the Esoterix mold panel. The rest are on a lab order here waiting for me to be able to get the lab draw. Not an easy thing for me in my condition. But, hope to get it done this week. Had planned to do it today when hubby takes me for an IV treatment, but I screwed up and forgot to fast for one the additional tests they want checked on insulin levels.
Thanks for the additional mold resources link. I think we can never have enough, and it is important to learn from all sources as not all experts agree. We have learn as much as we can, and make our own best informed decision about what makes sense and hope we get it right.
We are definitely going to need carefully evaluate the post remediation clean up product options. Every inch of the interior should be thoroughly washed down and dried out, and painted before I can safely return.
Since I have developed MCS on top of it all, it will take time for the fumes of the chemicals, paint, construction materials to dissipate enough where I can safely be here. Everything needs to off-gas, or whatever they call it. Find harmony balance with nature and my body is what I call it.
My husband went into the attic as well. He saw nothing. He is pretty observant, but that is not to say he didn't miss something. He now wants to ensure we have a professional home inspection with someone he knows and trusts and see if that guy sees something he missed.
My doctors keep saying it doesn't matter, quit looking for it, you know it is there, you know where the water damage happened, remediate that area asap. The issue for us is we want to know for sure what type of mold it is.
For the doctors, they say they know what type of mold is from my antibody blood tests. I know they are right so maybe we are going in circles. But, my husband will need help with the remediation process. He can't do it all alone and have daily caretaker responsibility for me as well.
The contractor wants to do his own testing to know what kind of mold it is because of his own liability with the safety of his workers. They are obligated to test. We understand that.
We found the DrS mold remediation books helpful to some extent, but way over priced. All his books are expensive. For example, the babesia book was $35 for a paperback.
His mold remediation books are an informational slowwwwwwwwwww drip process that reminds me of services of one of my doctors. Good information, dribbled over time at a very high price.
The books separately written by his co-author, a mold remediator, are better, but still a slowwwwwww drip process where he will start with information on something, then say "see our sister publication entitled........ for more information". By the time it is done you have paid $100 to buy all the books to get the cross referenced information. Very cheesy process. But, the information is worth it.
Mold is critical. It is credible information at a price. Same with the DVDs we have purchased, each one over $100 except for one which was around $60.
Much of the information is online somewhere. Some of you have wonderfully shared links to those sources which should help others learn, thank you.
In our case, we are in mold crisis and need the information quickly. Hubby doesn't know how to use a computer so it is all up to me, and I am the one with brain problems.
My neuro problems won't let me navigate many unfamiliar websites. It overstimulates my brain, worsens all my symptoms. So, the DVDs were vital to us. It is something hubby and I can watch together and actually see professional mold remediators demonstrate what needs to be done and hear their reasoning with benefit of voice inflection and body language to ascertain what is really critical and what is just cya info.
All the website info helps, thank you. I am reading little bits of them as I can.
One thing I have definitely learned in all of this (lyme and mold) is I have to educate myself and take responsibility for and manage my own health care.
Doctors know a lot, and thank God they are there. But, they don't know everything. No one does. Especially not with mold.
Posted by emla999/Lyme (Member # 12606) on :
Jam338, are you currently taking any anti-fungals to kill off the Aspergillus and Penicillium mold within your body?
Also,if your doctors think that Aspergillus or Penicillium mold might be causing your neuro symptoms then you might want see if your doctors would prescribe you a course of Voriconazole.
Vfend (Voriconazole) is one of the few anti-fungals tha is capable of crossing the blood brain barrier while at the same time being highly effective against Aspergillus and Penicillium molds.
Although, you would want to also take some mycotoxin binders while you're taking the Voriconaziole.
And mycotoxin binders differ in what mycotoxin they can bind too. Most mycotoxin binders are not capable of binding to every single different kind of mycotoxin there is.
So, taking a combination of several different types of mycotoxin binders such as activated charcoal, cholestyramine, bentonite clay, zeolite etc. may work better.
Posted by Jin (Member # 11735) on :
Dear TerryK, Thank you for the links and information! I will make a note of the Borax solution. I knew Kilz would not destroy the mold. Mom and Dad may have used bleach solution prior to applying the Kilz. Still, bleach may not do the job. You still leave dead spores behind that are dangerous. Whole new colonies can grow practically overnight.
Sincerely, Jin
Posted by jam338 (Member # 14002) on :
Emla999, thanks for the treatment suggestions! Thusfar, they don't have me on anything for any antifungals for the molds! That troubles me, and I don't understand why not.
I have compounded CSM, and they want me to start that. But, that doesn't kill anything right? It is just a binder to pull stuff out I think.
I wonder why none of these doctors seem to know what you have just told me with all these RX treatment options??
My yeast problem has substantially worsened the last 3 days. I now have vaginal yeast symptoms with pain. I have not been on any ABX so it didn't come from that.
He said try the Nystatin, and that it treats Candida in the gut, but should help the vaginal area as well. He said I not only have candida in the gut (and vaginal area) but also have it in the blood (Esoterix test).
He said he hesitated to prescribe a stronger antifungal for the candida in the blood because he isn't convinced that antibody exposure is current infection. He said it could be from exposure 10 yrs ago. [shaking head] I don't think it would be at this high of a level, if it was from 10 years ago.
This naturopath is very young and learning. Has missed the mark a few times with me (as have others). It happens. No doctor gets everything right 100% of the time. They are human; I get that.
He is definitely not mold or lyme literate. A nice guy and tries to helpful.
Emla999, thank you so much for helping me learn options about this. You have been extremely helpful.
Posted by sparkle7 (Member # 10397) on :
I don't have these issues as you guys do but I found that Yeast Cleanse by Solaray was better than Fluconazole for candida in my experience.
It's strong stuff & some people may have reactions to it.
Sorry that you are going through all of this. Sounds like a nightmare.
Be careful of bleach... it's carcinogenic.
Posted by emla999/Lyme (Member # 12606) on :
Jam338, I don't understand why your doctors haven't prescribed you anti-fungals either.
Jam338 said:
quote: He said he hesitated to prescribe a stronger antifungal for the candida in the blood because he isn't convinced that antibody exposure is current infection. He said it could be from exposure 10 yrs ago. [shaking head] I don't think it would be at this high of a level, if it was from 10 years ago.
I agree with you. I seriously doubt that your IgG levels would be this high if it was from 10 years ago. Is that even possible????
Oh, and by the way Candida albicans can produce a mycotoxin called GLIOTOXIN.
I have found that finding a doctor that truly understands chronic mold toxicity and their related mycotoxins is even harder than trying to find an LLMD. Maybe we need to start a list of MOLD LITERATE MEDICAL DOCTOR's aka MLMD.
And yes, Cholestyramine just removes the mold mycotoxins from your body but it will not kill any mold/fungi/yeast that you may have within your body.
So, just taking Cholestyramine alone may not help you all that much. Because the fungi/molds that may have been producing the mycotoxins were not killed and thus they could still be producing mycotoxins.
If the fungal infection is inside of your body then you will most likely have to take some kind of anti-fungal drug to kill the fungi/mold/yeast or herb.
At the same time you should also take mycotoxin binders such as Cholestyramine,activated charcoal zeolite etc. to bind up all the mycotoxins.
***You should take the anti-fungals a few hours apart from taking the mycotoxin binders though.
[ 05-14-2009, 12:56 AM: Message edited by: emla999/Lyme ]
Posted by jam338 (Member # 14002) on :
I have found that finding a doctor that truly understands chronic mold toxicity and their related mycotoxins is even harder than trying to find an LLMD. Maybe we need to start a list of MOLD LITERATE MEDICAL DOCTOR's aka MLMD.
Emla999, I totally agree. It is really hard to find a mold literate doctor. A MLMD list for this would be fabulous!!
BettyG has already asked me to please send her the names of the docs I have been working with. Maybe others can please her yours.
I also sent it to Metallic Blue with comments on my experiences thusfar, though a new patient with all.
BettyG and Metallic Blue, just to clarify so that others know, are y'all establishing a formal Literate Mold Doctor list that others can send to or request information from? Thanks:)
Posted by bettyg (Member # 6147) on :
jam,
i added your info on MOLD ll dr. tonight, and sent to others w/lists.
so YES, we will collect that info too since so many of us have MOLD problems.
mike aka metallic blue collects almost everything; he'll have to speak for himself, but i'm sure he will share; he's OUTSTANDING on that!! xox
Posted by emla999/Lyme (Member # 12606) on :
Here's a list of "MOLD LITERATE MEDICAL DOCTOR's" aka MLMB.
You'll have to scroll about half way down that page to see the list.
Posted by jam338 (Member # 14002) on :
I wish some organization would do a mold DVD like Andy did with UOS. It definitely needs to be done. If anyone knows Andy or has access to him, please suggest it as a consideration.
Oprah announced yesterday Dr. Oz will have his own TV show starting in September. I really think (hope!) he may venture into some of the "sacred cow" areas of medicine; i.e., lyme disease.
He wants to leave his legacy to medicine, and taking on tough controversial issues would definitely give him that platform.
He already had Andy on his XM radio program where they feature about lyme disease and UOS DVD. Oz stayed too much on the fence for my liking, but did at least do the show on it. Not many will.
If he were to take on this issue publicly on his TV show, it could pop lyme disease wide open. In my opinion that would be a great way to start his show. What you should know and what the government isn't telling your family's risk about Lyme Disease!!
We should all be encouraging him to do it. It could be perceived as too risky to start with but maybe an option for later. I sure hope so. And, hopefully he will do a show on mold sickness.
I have no idea through what mechanism/website we would do that. Probably through Oprah's website, but we did that recently lobbying her to do a show herself.
Also, call: 1-866-OPRAHXM. Tell them you want more coverage on Lyme Disease and Toxic Mold Sickness.
Posted by jam338 (Member # 14002) on :
ok, the lab analysis of our mold plate testing through Immunolytics Lab arrived today.
The lab says they found: -Pencillium -Cladosporum -Geotrichium
The first question I have for the lab is why they don't identify the TYPE within the species subset. Maybe that is a longer much more costly culture to define or available only through certain laboratories.
There are multiple species subtypes for each of these types of mold. Those were not identified. Not sure why not. Will post more after I have the consult with the lab.
The kitchen had the most mold colonies and had toxic Penicillium. The kitchen is an area that has had long term water damage.
The hot water heater closet shares the same wall but opens to the wall exterior onto the deck. We had a slow long term leak in the hot water unit.
It wasn't leaking enough to be visibly seen through the door. We had no idea it was leaking at all. It all leaked back and was absorbed into the insulation in the wall.
Penicillium can cause PERMANENT brain damage, liver and kidney cancer. Scary.
The report tells us how many colonies grew in each of the rooms tested (4). Wishing now we done every room.
Of course, these are very likely NOT the only types of mold spores in our house. We likely have more.
Mold is like Lyme, lots of false negatives. However, we didn't get any false negatives.
Once I again digest the report and formulate my questions, I'll call the lab for the free 20 minute consult. Likely next week.
I had 2 huge blood draws today for tests to help guide customizing detox IVs that are the maximum possible for my body but within the limit line of not wrecking my system further.
One of my doctors says I will need to do weekly IVs for about 3-4 months, perhaps twice a week near the end.
I am surprised I had any blood left. I have never seen so many tests checked on one lab order!!
Posted by jam338 (Member # 14002) on :
Emla999 thanks for the mold literate doctors link. Its a small list huh?
Hopefully, others can send BettyG and Metallic Blue names of any of your doctors who you feel are mold literate. I have already sent them the names of 3.
One of the mold doc names I sent (also mentioned previously on this thread) will work exclusively by phone consult and is $100 for an hour.
She recovered herself from mold sickness so that would be a good and reasonable place to start with medical discussions to educate yourself on mold.
I have no connection with any of them other than a being a very sick severely disabled patient who is consulting with them. I am a new patient to all 3, so I have not had long term care with any of them. All 3 are alternative/holistic oriented docs.
I heard there is another doc in the Santa Barbara, CA area. I will see if I can learn more and will send his info to Metallic Blue and Betty. I don't know if he does phone consults though, but he does take insurance and is lyme literate. He is a M.D. but very alternative/holistic and will not treat with ABX at all from what I hear.
Just saying there are options out there!!
Posted by emla999/Lyme (Member # 12606) on :
Jam338,
A documentary film about toxic mold induced illness has already been made. The documentary film is called "Black Mold Exposure".
"Black Mold Exposure" is the "Under Our Skin" of mold induced illness
Posted by jam338 (Member # 14002) on :
Thanks Emla999, we seem to be oddly synchronized with each other huh? lol
I'll check them out, thank you again for your continuing contribution ot . Continuing to look for good mold sickness awareness training option DVDs. Very different from mold remediation DVDs.
I need educational things I can give out my young docs who are still on training wheels while learning about lyme and mold.
Also, I need information on leaky gut and Immune dysfuntion; and, mitchodrial dysfuntion.
One step at the time..............
Posted by jam338 (Member # 14002) on :
Thanks to all who continue to contribute to this thread to help! Please keep up the good work!!!
Posted by bettyg (Member # 6147) on :
jam,
fyi, we've worked hard on a DR. OZ/OPRAH program with under our skin andy wilson, etc. there.
there was a BIG meeting of head honchos meeting in NYC 1-2 months ago; they were to decide on this. we've heard NOTHING since; so it's fizzled out.
when my contact isn't so sick and posting, i'll ask her more what happened.
andy wilson was to be on the dr. show around 1 month ago, and was waiting to hear confirmation news; but apparently didn't get it! he wasn't going to announce anything until it was OFFICIAL.
are you noticing the doors keep CLOSING for us even with good contacts?
greta van...... her cable talk show too; she said she'd done one, and then didn't follow thru.
so frankly we've done as much as we can and have had LYME patients involved in some of this decision-making on the larger scale.
so just to fill you in briefly on what has tried to be done with the most powerful, vocal lyme patients we have.
REMINDER, ROCKY MT. SPOTTED FEVER will be featured on THE DOCTORS TV SHOW, ABC, i believe at 3 pm CENTRAL time TOMORROW, 5-15 !! *************************************************************
I just copied the list of mold drs. from that site also and sent to all who have llmd nationwide lists just before coming here. Posted by jam338 (Member # 14002) on :
BettyG, hmmm, ya know thinking more about this, if the talks with Andy was 1-2 months ago, Oprah and Dr. Oz had to have already been talking about Oz getting his own show at that time. Those things don't happen over night and take planning. Maybe the Oz Show deal got struck about that time and they decided to take the Lyme show and move it to his show instead of hers.
I know I am being optimistic here, but let's all give energy to that being what happened and maybe it will come about!
I heard a story once about a little girl who wanted a puppy. Her parents kept saying no. She saved up her allowance until she had enough to buy a leash though she had no puppy.
She dragged the leash around the house and every where. When people asked her why, she said I am practicing for when I get my puppy. Eventually her parents broke down and bought her a puppy.
The guy who told this story on TV swore it was true and said it illustrated the power of positive thinking. Whether it is or not, let's hope so.
Let's envision Dr. Oz's first show on Sept 14 or soon thereafter will be about lyme disease. Maybe Andy will get that phone call he is waiting for;)
Posted by R62 (Member # 18531) on :
Benefect kills 99% funguses.
Posted by bettyg (Member # 6147) on :
jam, delightful story!! i totally agree.
darn; no RMSFever show on the dr. today!! how disappointing when the person who was interviewed sent out an email saying he would be on today!
Posted by emla999/Lyme (Member # 12606) on :
Jam338 said,
quote: I need educational things I can give out my young docs who are still on training wheels while learning about lyme and mold.
Also, I need information on leaky gut and Immune dysfuntion; and, mitchodrial dysfuntion.
Dr.Thrasher is a wealth of knowledge when it comes to toxic mold, mycotoxins and other immune suppressant substances. So, he might be able to recommend a place where you can get educational material for your doctors.
And Dr. Thrasher usually replies to questions that are sent to him via email.
Posted by emla999/Lyme (Member # 12606) on :
Here's a video that discusses the health effects that toxic mold has upon the body and its treatment.
Emla999, thank you for the great links for learning more! I haven't been around because we relocated to a hotel last night. I am worn out physically and emotionally. Barely able to move all day.
It is hard enough just been sick with this disease, but being so sick and displaced from my home is about more than I can bear.
At home I had all my supplements and meds organized and things set up where I could manage on my own for a couple of hours while hubby went grocery shopping.
With my cognitive and physical standing problems everything needs to be organized and kept in its place so I can find things quickly to minimize time on my feet.
So, I am really worn out today, but hope to be able to check out the links soon. Thanks!
Posted by Jin (Member # 11735) on :
Dear jam338, Just concentrate on getting away from that mold! Is it possible for your husband to scrub up anything you need to bring with you like supplement bottles? It is good you are organized. I am trying to figure something out for us. It is heartbreaking thinking your home is poisoning you.
There are so many memories, and the worry about finances. Still, I must decide whether I want to live or die. Mold kills! At least now I may be getting somewhere. Meanwhile, take care!
Dear Sparkle, You are right. Bleach is carcinogenic. I was thinking the same thing. The fumes alone are an issue. There is bound to be something safer. What about Borax?
Sincerely, Jin
Posted by jam338 (Member # 14002) on :
Jin, borax does kill mold. There is a post a few spots back about making a borax paste. I think it was Emla999 or Terry K, who posted about it, and I have read about it the mold books we purchased.
We are out of the house now. In a hotel room. The contractor will be coming here tomorrow to meet with us as I can not get out of the bed any further than the bathroom.
Based on all the warnings I have read about inadvertent transport of mold spores with cross room contamination, we likely have transported a few a few spores with us in our clothes, suitcases, etc. but, we brought one of the HEPA air filters and keep that going 24 hrs a day. I am going to have hubby pick up some Borax, and order the Benefact organic mold cleaner/killer. I should have done that already.
Not the best situation, but at least I am in a less threatening environment. Maybe we will need to change rooms later.
Hubby is thinking about renting a motorhome for us to put along side our house while the work is being done. That would at least help me to not feel so displaced from my home.
We plan to also put a tent in the backyard for use on cooler days. The temps here have jumped to the 90s, and we don't feel that my fragile system can tolerate much temperature shocking. So, we are evaluating backup plan options now.
It is a very hard time for me, and I have cried for the 2 days we have been here at the hotel. The physical process of packing just a few things and my medicinal arsenal has now caused me to crash.
I am praying that my weekly Glutathione+ IVs on Wed will help bring me up a little. My doctors want me to start CSM right away, but I am terrified of being made worse. I am barely able to get myself back and forth to bathroom or bathe as it is. Critical functions for being by myself during parts of the day while hubby is running back and forth to take care of things at the house with plants, mail, laundry, etc.
Good luck to you Jin, you will sort your way through your situation. Awareness is 80% of the battle, and you have educated yourself well about the risks of mold.
Just keep envisioning yourself in a mold safe environment and your internal compass will guide you to it and it to you. Remember that one can not hit a target they can not first picture. Mental imagery is a facinating internal radar guidance system that we all have onboard. We just need to learn to use it and keep it tuned up through thoughtful meditation. Something I hope to do more of and is what is helping me get through my difficult days here.
I had hubby pack my CD player and brought soothing relaxation CDs and I listen to that during the day when I am here by myself while I lay on the infrared mat. I cried less today so maybe it is helping me.
The only reason for adding this to this thread is let you see how bad mold can disrupt your lives. Don't let this happen to you. Don't risk becoming displaced from your home with no where to live at a time when you may be at your sickest and least capable to do anything about the problme.
Do your home inspections and correct any problems now. Remember an ounce of prevention is worth a pound of cure. There could not be more truer words about mold. We are learning this hard the way. Don't let this become your situation. If you have been following this thread, then you are probably wondering about your mold risk situation. Get it checked out now.
[ 05-19-2009, 12:00 PM: Message edited by: jam338 ]
Posted by disturbedme (Member # 12346) on :
Jam, just wanted to update the pictures I have of the mold we found in our apartment. We sent off the air vent/duct sample and should know the results of that this week sometime. I will post the results of that when we get it. We need to send these in as well. $30 for each we send in though, so it's getting pricey and we don't really have the money!!!
Here they are. A few different types it looks like. The mold from the air vent/duct sample looked just like the black/green mold spore on the bathroom plate in this picture. They just kept growing and growing though, so they got very big. These continue to grow as well.
Posted by jam338 (Member # 14002) on :
Disturbedme, so glad you are testing to see if this is any way connected to illness and a barrier to healing.
From the pictures, it suggests the potential source area is the bathroom. There could have have been an under the sink plumbing leak, toilet overflow problem, or around the bathtub/shower.
Do a careful visual inspection of the bathroom. However, not seeing a problem doesn't mean it isn't there. Most apt owners do superficial repairs (less costly) and paint or tile over it.
Your pictures look very similar to ours.
Our lab results are back from Immunolytics lab, as follows:
Types of Mold n Our Gravity Mold Test Plate Analysis Report:
-Penicillium -Cladosporum -Geotrichium
I don't understand why Aspergillus was not in the report. Maybe it just didn't bloom during the last one hour test period. Not sure. The green fuzzy mold with outside ivory border (in your plates and ours) look consistent with pictures of aspergillus mold I have seen online. However, maybe the Cladosporum or Geotrichium mold might look similar. Don't know. I haven't yet looked them up. We were too busy moving out, and then crashed from the move, along with severe depression setting in.
Today I have had to pull myself out of it and get back to the mold books. We are meeting with the contractor this evening and I need to know more detail about what questions to ask him, especially regarding subcontractors specific certifications, bonding, insurance, etc.
Anyway, back to your pictures. It will take only 7-10 days for you to get the lab results and you will know more. You definitely will not have a false negative report as you have already seen that mold grows in the culture.
So, you will know that you have those particular molds and probably others that are not showing in the mold gravity plate testing.
Here is why I say that. Certain molds are more detectable through different types of testing whether it be surface sampling, air sampling, or gravity plate testing.
The type of testing that you and I have done thusfar is gravity plate testing. It means the petri dish is capturing whatever mold spores that gravity of air allows to fall down through the air onto the petri dish in that one spot.
For example, theoretically speaking, if you had several petri dishes in one room it is conceivable that you could capture different spores in different locations of the room. Of course one would not test that way as it is simply cost prohibitive to do so.
But, it does demonstrate why testing can produce false negatives and there still be mold spores somewhere in the room. Mold does not particularly have an "even distribution" system throughout the air. The gravity plates collect for one hour of time out of a 24 hour day.
One could say well just leave the gravity plate out longer than an hour, but I wouldn't do that without first having a consultation with the lab as they take the exposure time into consideration when they conduct the analysis. Not following instructions could skew the results of your report.
The same is true for air spore trap sampling. It only captures an area of air, but that test is only for 5-10 minutes at a calibrated level of input, usually 15 liters per minute, but can vary based on type of equipment used. Each manufacturer has their own specifications.
So, what I am trying to say, is you know have mold of some sort. Not all mold is dangerous toxic mold, so don't panic until you have the lab results, but also know that some toxic molds aren't likely to show up on a mold gravity plate test.
For example, stachybotyrs, black toxic mold (the mother of all toxic molds) is very improbable to show up in gravity plate or air spore trap testing. Why? Because Stachy is heavier than most mold and doesn't float around in the air for long.
Due to its weight, Stachy falls to a surface (carpet/wall/furniture) rather quickly. The most probable form of testing to capture Stachy is surface sampling. How one surface samples is using tape lifts, where you follow a specific protocol process, which is basically a 3" piece of tape and carefully lift up the contents and then have the lab analyze it.
Another form of surface sampling is "swabbing" where you use a protocol process and solution and swab an area about the size of a folded business card. Insert it into the vial and mail to the lab for analysis.
But, for surface sampling you pretty much need for the mold to be visible so you know where to do the tape lifts or swabbing.
Surface sampling is typically done where you can see visible area of water damage and suspect mold area. For example, if you look under your bathroom sink, take a good whiff to see what you smell. Does it smell musty/moldy? If so, there has probably been water damage at some time. Not an issue for 75% of the population, but a huge issue if you are in the other 25% and currently chronically sick!
So, you could do tape lift or swab sampling under the sink if you see any suspect areas. Perhaps a cheaper process might be the instant pen process ($15 online) where you can test a suspect area and it will instantly tell you whether it is mold or not. Of course, to find out if it is dangerous mold, you still need to have it lab analyzed.
We haven't yet purchased the instant pens but will do so if our home inspector doesn't have them for when he goes under the house to inspect the crawl space area. My doctor says many qualified home inspectors have and use them. My guess is that varies state to state.
The instant pens are purchaseable through Dr. Mary Beth Short Ray's Mold Help online site at http://www.toxic-black-mold-syndrome.com/MOLDHELPSTORE.html. I can't by the picture who the manufacturer of the pen is, but you can probably google around and compare the picture or there may be other manufacturing sources. Just google "instant mold test pen". I think we will use Dr. Mary since not only does she provide the lab's analysis but also gives her medical opinion on how the mold type may affect your health risks and how to treat it. Personal preference. Go with the cheapest you can find it!
The reality is though, if you see a suspect area you want (NEED) to know whether it is dangerous mold or not.
With the instant pen, it costs $15 to buy and $30 to analyze, so a total cost of $45.
If you do the tape lift sample, the test strip is free (plus $5 shipping) and $30 lab analysis, so a total cost of $35. If testing several areas, that $10 difference between the two options could add up. Ten tests would be $100 difference.
There are air spore testing kits you can order and do your own at home. Not cheap, but cheaper than a home inspector to do it.
Both of the above websites (Dr. Mary and the homemoldtestkit.com site) have home air spore kits. So does examinair.com, one of the products that Dr. Mary recommends and has a click through link to on her site.
Disturbedme, in your situation, if one of you are chronically ill, then you need to carefully think about relocation options. You are renting so that makes it easier. The mold test results should resolve any issues about getting out of your lease agreement.
If it doesn't, there are things you can do about that where your landlord will be more than happy to let you out. In fact, they will be pushing you out the door. Just tell them you are going to start handing out copies of your lab report to neighbors and suggest they look into this problem as it is circulating in the shared HVAC system.
My guess is if you bring that up, you are as good as out without a peep.
The challenge will be in finding a rental without water damage history. Not easy. Most have it. Look for a newer rental, it is less likely to have it (maybe).
Well, gotta get back to my mold books and get my questions finished up. Hang there, you will have answers soon:) Be thinking about your next step options in the meantime.
Posted by jam338 (Member # 14002) on :
Well, the contractor just left the hotel room. He arrived with 2 mold remediators in tow, so 3 of them and hubby and me in a small hotel room with me in jammies in the bed.
They have never had to visit a prospective client while in the bed, but doing so has clearly impacted all of them. It was obvious that all 3 are well onboard with the seriousness.
I quizzed all 3 on the areas I had learned from the mold books and DVDs, they passed with flying colors so I am sure they know what they are talking about. All certifications are in place as they should be.
In fact the head remediator has been sick from mold from doing previous jobs. He was very interested in my situation as he has the genetic markers himself and has not changed professions. He has a great doctor who works with him and puts him on a protocol plan prior to starting each job. So far it is working for him. Seeing how bad it can really get might make him rethink that decision at some point.
I could see the worry on his face with how bad he could have gotten. He said it has been a year since he recovered, but never got as bad as me.
We dragged out the results of recent mold plate testing and my body blood test results. I didn't feel awkward in sharing my blood test results and all of them were facinated in it and didn't know that it was even possible to blood test for it.
So, I feel like I helped them learn something new that might help someone else they may encounter along the way who is sick yet maybe all external testing is showing false negatives.
Now, he sees that no matter what the external tests say, that my body testing shows there is mold exposure, and that it has to come from my house. I have been bedridden for most of the past 4 years.
The senior remediator's role was originally to handle the cost quotes and answer questions on behalf of the company,etc. After 2 hours however, he said he was very interested in my situation (I think because of the blood tests and seeing how bad I am), and that he wants to personally handle all the house inspection and testing and wanted to start tonight.
We sure didn't expect that kind of response. It was already 6:30 pm, long after the end of their work day. He told me husband he wanted to go back to the shop and pick up the equipment and meet him over the house to do the testing.
So, they are over there right now. I am very nervous about all this, and wondering how it will go.
For those reading this thread, please say a little prayer for us, thank you.
I think we have finally been guided to people who can responsibly help us. This company is nationally certified and usually specialized in high end custom home restorations (like victorian homes etc), but I think they will handle any size job no matter how big or how small.
This is one of the companies I had previously researched backgrounds on through their certification affiliation with DKI (Disaster Kleenup : http://www.disasterkleenup.com/ The national
We just lucked out that our contractor/neighbor has personally known and worked with this guy for over 20 years. He says the guy has impeccable integrity and is very fair in his price estimates. I sure hope so.
So, the plan is to do the next level of testing with air spore trap testing. Then, later, they will open up the walls and see what is behind there and do actual tape lifts and swab testing on any areas that look suspicious.
He knows now what type of molds he is looking for after seeing my blood tests. And, if it doesn't show up in one test then they need to keep checking because it is in there somewhere or it wouldn't be in my blood.
The whole point in continuing with the air spore trap testing is that it is important not to document every stage of the process and that it was professionally handled correctly by an accredited mold remediator.
If we didn't, it would substantially hurt our property resell value as we couldn't prove it was properly remediated. Now, we will have all the documentation necessary from the best company in this area who has a great reputation with realty companies.
They know if he did the work, it was done correctly. He won't do half assed work. He can't. In order to maintain his certification through the DKI national affiliation they require that very strict standards be followed. That is reassuring for us.
Posted by jam338 (Member # 14002) on :
I also wanted to post something more from one of the DVDs I ordered. It outlines the proper breathing standards of mold particle counts per cubic center meter of air.
It is called the "S520 Mold Remediation Standard" @www.iicr.og. I haven't yet had time to study it, but doesn't look like I will need to since this guy seems to know all about it.
Posted by jam338 (Member # 14002) on :
Ohhhh, one other thing, sorry my brain isn't working so clear after 2 hours of meeting with so many people. He told me about the name of another mold literate doctor in Northern CA. The guy he was referred to. So, I will get that name to BettyG and Metallic Blue for the list. The doctor is in Sebastapol, Ca and the initial consultation with him is $400. If anyone wants more info on him please PM me or Betty or Metallic Blue. They have started a good list of mold aware/literate docs across the US.
Posted by bettyg (Member # 6147) on :
jam,
praying this mediator can clean up this mess right, and so glad he listened to you and saying HE'D PERSONALLY DO THIS!!
prayers to jam/family so jam can get her health back and out of bed! xox
Posted by Jin (Member # 11735) on :
Dear jam338, Thank you so much for your information and encouragement! I have asked the angels to help you and your husband. Be sure your husband wears a mask when going into the house! My parents are in complete denial, so it is all up to me. I understand how upsetting this is, because being out of your home makes you so sad.
Considering your emotional strain and illness, I wanted to help. At least my brain is working fairly well. I did some detective work for you. Those three molds are not normally as problematic for people with healthy immune systems, but those who are chronically ill it can be the straw that breaks the camel's back. Here is the information I found and their web addresses: Cladosporium spp. Link ex Gray, 1821, de Hoog (1995)
Cladosporium is a dematiaceous (pigmented) mould widely distributed in air and rotten organic material and frequently isolated as a contaminant on foods. Some species are predominant in tropical and subtropical regions [533, 602]. Also, some Cladosporium spp. were isolated from fish and were associated with findings of infection [265]. Species
The genus Cladosporium includes over 30 species. The most common ones include Cladosporium elatum, Cladosporium herbarum, Cladosporium sphaerospermum, and Cladosporium cladosporioides. Synonyms
See the summary of synonyms and teleomorph-anamorph relations for the Cladosporium spp. Among Cladosporium spp., Cladosporium herbarum has a teleomorph, Mycosphaerella tassiana. Pathogenicity and Clinical Significance
Cladosporium spp. are causative agents of skin lesions, keratitis, onychomycosis, sinusitis and pulmonary infections [462, 1847, 2202]. Macroscopic Features
The growth rate of Cladosporium colonies is moderate on potato dextrose agar at 25�C and the texture is velvety to powdery. Similar to the other dematiaceous fungi, the color is olivaceous green to black from the front and black from the reverse. Most of the Cladosporium spp. do not grow at temperatures above 35�C [462, 602, 2202]. Microscopic Features
Cladosporium spp. produce septate brown hyphae, erect and pigmented conidiophores, and conidia.
While the conidiophores of Cladosporium cladosporioides and Cladosporium sphaerospermum are not geniculate, those of Cladosporium herbarum have a geniculate appearance. In addition, conidiophores of Cladosporium herbarum bear terminal and intercalary swellings. Conidia of Cladosporium spp. in general are elliptical to cylindrical in shape, pale to dark brown in color and have dark hila. They occur in branching chains that readily disarticulate. Conidial wall is smooth or occasionally echinulate. Cladosporium cladosporioides produces unicellular conidia. On the other hand, those of Cladosporium herbarum are two- to four-celled. Cladosporium sphaerospermum produces elongate and septate shield cells which are also known as ramoconidia [462, 2202]. Histopathologic Features
Brown (phaeoid) hyphae may be observed in infected tissue samples. Compare to
Cladophialophoraspp.
Cladosporium differs from Cladophialophora by having conidia with dark brown colored hila (scars). While Cladophialophora bantiana can grow at 42-43�C, Cladophialophora carrionii and many species of Cladosporium do not grow at temperatures above 35�C.
The monoclonal antibody, EB-A2 used in the commercially available latex agglutination kit to detect galactomannan antigen in sera of patients with aspergillosis may cross react with Cladosporium herbarum [1153]. Laboratory Precautions
Cladosporium spp. should be handled with care in a biological safety cabinet. Susceptibility
Very limited data are available on susceptibility profiles of Cladosporium spp.
Geotrichum is a yeast found worldwide in soil, water, air, and sewage, as well as in plants, cereals, and dairy products [301]. It is also found in normal human flora and is isolated from sputum and feces [1295, 2202]. Species
The genus Geotrichum includes several species. The most common one is Geotrichum candidum. Geotrichum clavatum and Geotrichum fici are among other Geotrichum species.
Geotrichum fici has an intense smell resembling that of pineapple [2202]. Synonyms
See the summary of synonyms and teleomorph-anamorph relations for the Geotrichum spp. Pathogenicity, Clinical and Environmental Significance
As well as being a colonizer of the intestinal tract, Geotrichum spp. may cause opportunistic infections in immunocompromised host and these infections are referred to as geotrichosis. The infections are usually acquired via ingestion or inhalation. Bronchial and pulmonary as well as disseminated infections and fungemia due to Geotrichum have been reported. It has also been isolated from infections resulting from trauma [62, 332, 716, 753].
Apart from its clinical significance, there are very recent claims on environmental damages that Geotrichum might have caused (go to article in the Telegraph). It has been blamed for destroying the aluminium and data-storing polycarbonate resin that are found in the structure of compact discs. This in turn led to discoloration of the disc, with the disc becoming partly transparent. The exact role of Geotrichum in this destruction process requires confirmation. Macroscopic Features
Geotrichum strains produce rapidly growing, white, dry, powdery to cottony colonies, resembling "ground glass." When disturbed on the surface, the colony becomes yeast-like or slimy. The optimal growth temperature is 25�C. Most strains either do not grow at all or grow weakly at 37�C [1295, 2202]. Microscopic Features
Arthroconidia and coarse true hyphae are observed. Blastoconidia, conidiophores and pseudohyphae are absent. Arthroconidia (6-12x3-6 �m) are unicellular, in chains, hyaline, and result from the fragmentation of undifferentiated hyphae by fission through double septa. They are either rectangular in shape or rounded at the ends resembling the barrel shape. Consecutive formation of arthroconidia and absence of empty cells that fragment to release arthroconidia ("disjunctor cells") are typical [1295, 2202]. Histopathologic Features
Septate hyphae (3-6 �m wide) and rectangular to oval arthroconidia are observed in tissues infected with Geotrichum [462]. Compare to
Geotrichum differs from Scytalidium by having hyaline arthroconidia and from Arthrographis and Oidiodendron by lacking conidiophores. Unlike Malbranchea, Geotrichum produces arthroconidia by fission rather than by releasing them from disjunctor cells. While the arthroconidia of Coccidioides immitis alternate with empty cells, those of Geotrichum are consecutive. Unlike Trichosporon and Moniliella, Geotrichum lacks blastoconidia. Laboratory Precautions
No special precautions other than general laboratory precautions are required. Susceptibility
In vitro data on activity of antifungal agents against Geotrichum isolates are rather limited. Among the azoles, voriconazole yields the lowest MICs, followed by ketoconazole and itraconazole [2432]. While fluconazole yields very low MICs, some sordarin derivatives also show favorable activity against clinical Geotrichum isolates [1040, 1632].
For MICs of various antifungal drugs for Geotrichum, see our susceptibility database.
The standard therapeutic regimen for treatment of geotrichosis is not yet available. Amphotericin B with or without flucytosine could be considered as could itraconazole. However, prognosis of disseminated geotrichosis is usually poor, with a mortality rate as high as 75% [753].
With only one exception (Penicillium marneffei, which is thermally dimorphic), the members of the genus Penicillium are filamentous fungi. Penicillium spp. are widespread and are found in soil, decaying vegetation, and the air. Showing again how it is distinct from other species in this genus, Penicillium marneffei is endemic specifically in Southeast Asia where it infects bamboo rats which serve as epidemiological markers and reservoirs for human infections.
Penicillium spp. other than Penicillium marneffei are commonly considered as contaminants but may cause infections, particularly in immunocompromised hosts. Penicillium marneffei is pathogenic particularly in patients with AIDS and its isolation from blood is considered as an HIV marker in endemic areas. In addition to their infectious potential, Penicillium spp. are known to produce mycotoxins [1805]. Some Penicillium spp. have telemorphs included in genera Eupenicillium, Talaromyces, Hamigera, and Trichocoma. Species
The genus Penicillium has several species. The most common ones include Penicillium chrysogenum, Penicillium citrinum, Penicillium janthinellum, Penicillium marneffei, and Penicillium purpurogenum. Identification to species level is based on macroscopic morphology and microscopic features [531].
See the summary of species and synonyms for the Penicillium spp. Pathogenicity and Clinical Significance
Penicillium spp. are occasional causes of infection in humans and the resulting disease is known generically as penicilliosis. Penicillium has been isolated from patients with keratitis [581], endophtalmitis, otomycosis, necrotizing esophagitis, pneumonia, endocarditis, peritonitis, and urinary tract infections. Most Penicillium infections are encountered in immunosuppressed hosts. Corneal infections are usually post-traumatic [581]. In addition to its infectious potential, Penicillium verrucosum produces a mycotoxin, ochratoxin A, which is nephrotoxic and carcinogenic. The production of the toxin usually occurs in cereal grains at cold climates [1804].
Penicillium marneffei is a pathogenic fungus and specifically infects patients with AIDS who live at or visit Southeast Asia (Thailand and adjacent countries, Taiwan, and India) where the fungus is endemic [565, 2114, 2200]. Penicillium marneffei infections have also been reported in non-AIDS patients with hematological malignancies and those receiving immunosuppressive therapy [2456]. Penicillium marneffei infection, so called penicilliosis marneffei, is acquired via inhalation and results in initial pulmonary infection, followed by fungemia and dissemination of the infection [431, 803, 1926, 2114]. The lymphatic system, liver, spleen and bones are usually involved. Acne-like skin papules on face, trunk, and extremities are observed during the course of the disease. Penicilliosis marneffei infection is often fatal. Macroscopic Features
The colonies of Penicillium other than Penicillium marneffei are rapid growing, flat, filamentous, and velvety, woolly, or cottony in texture. The colonies are initially white and become blue green, gray green, olive gray, yellow or pinkish in time. The plate reverse is usually pale to yellowish [531, 1295, 2144, 2202].
Penicillium marneffei is thermally dimorphic and produces filamentous, flat, radially sulcate colonies at 25�C. These colonies are bluish-gray-green at center and white at the periphery. The red, rapidly diffusing, soluble pigment observed from the reverse is very typical. At 37�C, Penicillium marneffei colonies are cream to slightly pink in color and glabrous to convoluted in texture [531, 1295, 2144, 2202]. Microscopic Features
For species other than Penicillium marneffei, septate hyaline hyphae (1.5 to 5 �m in diameter), simple or branched conidiophores, metulae, phialides, and conidia are observed. Metulae are secondary branches that form on conidiophores. The metulae carry the flask-shaped phialides. The organization of the phialides at the tips of the conidiophores is very typical. They form brush-like clusters which are also referred to as "penicilli". The conidia (2.5-5�m in diameter) are round, unicellular, and visualized as unbranching chains at the tips of the phialides [1295, 2144].
In its filamentous phase, Penicillium marneffei is microscopically similar to the other Penicillium species. In its yeast phase, on the other hand, Penicillium marneffei is visualized as globose to elongated sausage-shaped cells (3 to 5 �m) that multiply by fission.
Penicillium marneffei is easily induced to produce the arthroconidial yeast-like state by subculturing the organism to an enriched medium like BHI and incubating at 35�C, in which after a week, yeast-like structures dividing by fission and hyphae with arthroconidia are formed [531, 1295, 2144, 2202]. Histopathologic Features
Intracellular arthroconidial yeast-like cells are observed inside the macrophages in infected tissues [531]. Compare to
Paecilomyces
Gliocladium
Scopulariopsis
Penicillium differs from Paecilomyces by having flask-shaped phialides and globose to subglobose conidia; from Gliocladium by having chains of conidia; and from Scopulariopsis by forming phialides. Penicillium marneffei differs as well by its thermally dimorphic nature. Laboratory Precautions
No special precautions other than general laboratory precautions are required. Susceptibility
Available data are very limited. For Penicillium chrysogenum, MICs of amphotericin B, itraconazole, ketoconazole, and voriconazole are acceptably low, while the denoted MICs for Penicillium griseofulvum are higher than those for Penicillium chrysogenum [2432]. Notably, Penicillium marneffei isolates may yield considerably high MICs for amphotericin B, flucytosine, and fluconazole and relatively low MICs for itraconazole, ketoconazole, voriconazole, and terbinafine [531, 1094, 1152, 1489]. Further data are required to provide a more precise susceptibility profile for various Penicillium spp.
For MICs of various antifungal drugs for Penicillium, see our susceptibility database.
Amphotericin B, oral itraconazole, and oral fluconazole have so far been used in treatment of penicilliosis marneffei [431, 1371, 1926]. Oral itraconazole was found to be efficient when used prophylactically against penicilliosis marneffei in patients with HIV infection [423].
I hope this helps! I could not find any really good pictures. The descriptions are pretty good, though. They were very useful. These sound like the molds you were describing in the petri dish.
Sincerely, Jin
Posted by jam338 (Member # 14002) on :
BettyG, thank you so much for the sweet and thoughtful prayers. I do believe with all my heart that prayer helps. Thank you for helping me.
Jin, bless your heart as well for the prayers and all the information you researched and posted to help me, thank you! I am very touched by your kindness to reach out to help me research. I am so overwhelmed with sorting all this out. So, your research greatly helps me, thank you:)
The worst of those particular 3 molds that turned up on our gravity plate testing is the Penicillium which is a very dangerous mold to those in the 25% mold susceptible group. It can cause permanent brain damage, liver and kidney cancer.
We are a bit mystified why some of the other toxic mold antibodies in my blood labs didn't manifest in the gravity plate testing. But, we know gravity plate test can miss lots of mold spores, it is just the nature of the process.
Maybe air testing will reveal more. Most certainly once the walls are opened up with accessibility to do actual surface sampling will reveal more.
More on our further mold testing process: They didn't get all the testing done last night that the remediator wants to do. Hubby said he was very methodical and efficient how he goes about his work. He is coming back on Saturday to do some more specific testing in additional areas he identified as possible suspect areas. Plus they will crawl under the house etc on Saturday.
Last night the initial inspection involved overview diagnostics. For example, hubby said he used a moisture meter tool and could immediately tell we have a big moisutre problem in our downstairs shower. We did not expect that would be a suspect area at all. That shower has only been rarely ever used at all. Only when my family comes out from the east coast which is rare; 4-5 times in 20 years.
However, when we relocated me downstairs because of the original problem in the upstairs master bath area, I started using the downstairs shower!
So, it was meant to be for me to start using that shower, so this area would be detected in the home inspection process!
Hubby now recalls that when our original contractor built the house he cut corners on that bathroom. He did not use the green "wonder board" that is recommended for behind all showers. He used only regular sheetrock. A huge no no, but legal, in the shower area.
It is a tile shower, and over time any and all tile groutlines will develop hairline cracks and allow moisture (water) in behind. That is when mold starts to grow!
Over 20 years ago we didn't know the contractor had done that until it was too late. We made the financial decision to not rip it out and redo it since it would be a rarely used shower. What a mistake that has turned out to be, but who knew it could lead to this???
There is no visible problem with that shower. It still looks as good as good as the day it was built. All the clear glass and brass still looks brand new, so who would have guessed with so little use that there would be a problem in that shower??? We sure didn't.
The point in sharing all this is to emphasize (again) that you can't tell if there is a mold problem just by looking. You need to test.
The area in that bathroom that we knew would be a problem is around the toilet. The wax seal failed and caused a slow water leak problem.
If we had proceeded on our own with the remediation process with just hubby doing the work, we would have entirely missed this problem with the shower. It takes the right tools to detect the moisture content in the walls, and the right person operating it who will be truthful and truly knows about safe percentage levels.
So, we are really glad that for right now it appears that we did our homework well and have chosen wisely about our process thusfar. Knock on wood!
So, maybe we will soon have more definitive answers about our house mold crisis.
In the meantime I am hoping the healing of my body from toxic mold can begin now that I am physically removed from the source of the mold.
Maybe now I can get well enough that my LLMDs feel more secure about starting to treat my lyme disease and babesia.
Posted by Marnie (Member # 773) on :
It appears to deal with mold, we need the Th2 immune pathway to kick in.
For those persons with lyme as well as those persons with certain genes (who have mold triggered asthma), the Th1 pathway is predominant.
The gene involved is:
B16 Arg/Arg which renders some people ***resistant to an arginine deficiency.***
If you have that gene AND lyme, any mold exposure could be a HUGE problem.
Posted by jam338 (Member # 14002) on :
Marnie, thanks for the information. I remember one of my LLMDs mentioning the importance of Th1 and Th2, but he said it as though he thought I already likely knew it. I don't.
I didn't want to derail him and forgot to ask for more details later.
Is there a lab test to evaluate B16 Arg/Arg? Or is that part of the testing panel for Th1/Th2 functioning? Assuming a Th1/Th2 testing panel even exists. Seems like I have read about it being tested somehow. I would greatly appreciate more information if you or anyone knows more in this area.
I am hoping that more of my many lab tests are done, but still have more to get drawn at Quest.
Hubby keeps forgetting to check the fax machine when he goes to the house, and that is where my blood test results come in. Of course, to my doctors as well. But, they always authorize a fax send to me so I can review and prepare my questions in advance of appt to discuss results.
I have about 50 labs right now that we are waiting for results so that they can prepare compounded detox IV's for me.
Right now they are giving me weekly IVs of Myer's Cocktail with Glutathione to get me started. The first one helped a little, but then we had the move to the hotel, a crash/setback, so the second one didn't help as much. We'll see how the one today does for me.
Marnie, can you please clarify more about what you mean "resistant to an arginine deficiency". I assume that a "deficiency" in anything is not a good thing as it symantically means an insufficient level of something. So, a resistance to a deficiency sounds like that would be a good thing, but if that is the case, then I don't understand its association with a problem.
I hope I am making some sense with my question. Sorry if I am not. Trying to get showered/dressed with rest breatks for my trip out for the weekly IV.
Posted by Marnie (Member # 773) on :
Too much arginine -> too much NO which the body will try to counter in many ways.
"Nitric oxide in the small amounts made by the body..."
Some is good and needed, too much is not.
The balance is off.
People with that gene look to have excess arginine (don't let the level drop).
Genetic testing can be done to see if you have that gene and may need to counter the excess via diet/supp.
Posted by emla999/Lyme (Member # 12606) on :
Marnie or anyone else,
I have read that by taking magnesium you can make a fungal infection worse.
Is this true??????
Posted by jam338 (Member # 14002) on :
Emla999, seems like to me that I have read post warnings about magnesium, something about lyme loving it and it feeds lyme, which is theorized why many of us might be deficient in it.
Some have said when we supplement magnesium we may be feeding the critters we are trying to kill. Not sure if that is similar with fungal infection or not.
I take about 1200 mg of Malic Acid twice a day, and if I don't my muscle spasms (especially trapezius area) are much worse. There were some studies done on the benefit of Malic Acid. Said it could bring relief within 48 hours which I thought was a ridiculous statement as most supplements take several weeks to notice improvement.
However, my sister and I both noticed significant improvement within the first week of taking it. If I inadvertently run out of it, my neck and shoulder spasms return with a vengance. They never completely go away, but do significantly improve.
Without the Malic Acid I live an ice bag on my neck and shoulders.
Posted by jam338 (Member # 14002) on :
Terry K, you said you had used essential oils/diffuser to help with mycotoxin treatment. I have been looking at the Thieves products (oil and air pump diffuser (http://www.secretofthieves.com/thieves-diffuser.cfm)
On another thread (essential oils) you mentioned Thieves was one of the products you used. I am confused whether you used an internal Thieves product or the external diffuser process, or both? Can the same products be used either?
As you can tell I know nothing about essential oils, but want to learn. I read on the Thieves website where it supposedly can be an organic way for treating mold. Perhaps similar to the Citrisafe products but obviously using different product formulations since both are apparently patented processes.
Just a footnote reminder for others though that killing mold organically is not a substitute for remediation. You still have to remove the dead spores no matter what. Still need to remediate.
Posted by emla999/Lyme (Member # 12606) on :
Jam338,
Yeah, I have also heard some people say that taking magnesium supplements actually made their Lyme Disease symptoms worse.
But I can't help but wonder if those same people were actually just making a fungal infection/yeast worse????
The link bellow seems to indicate that magnesium can possibly make a candida infection worse.
"strong ionic magnesium solutions greatly increase rhinovirus, herpesvirus and Candida albicans in vitro, and appear to worsen these infections in humans. "
But it seems as though a lot of people are deficient in magnesium, so whats a person to do??
Maybe fungal infections are part of the reason why so many people are low in magnesium nowadays..??
Posted by disturbedme (Member # 12346) on :
Anyone know for sure if LapCorp does this test (the Esoterix antibody mold test)??? I went to my LLMD today and tried to get the tests written up and whatnot, but they could not find the codes for it and they even called LabCorp and LabCorp couldn't find it and said they'd call them back. Sooo... anyone know for sure and know the RIGHT diagnostic codes and whatnot?
Thanks so much!!!
Posted by TerryK (Member # 8552) on :
jam, You can use some oils internally and in the diffuser but not all. I believe Young Living oils are very pure and most can be used internally. Any oils taken internally should be used with great caution. Also put them in capsules.
I saw a doctor who was supposed to be a mold expert and he told me to take thieves oil internally. He was suprised when I told him I was already using it. I was suprised that he knew about it. LOL
Terry
Posted by jam338 (Member # 14002) on :
Disturbedme, yes it is definitely through LabCorp, but it is an Esoterix Lab test. I think maybe LabCorp must have bought Esoterix Lab, not sure. My lab test order says Esoterix Labs with no mention of LabCorp on their letterhead. However, when the bill came in it states LabCorp. When the blood draw was done it was at LabCorp.
Another board member, CD57 had previously told me when she contacted Esoterix she was told there are regional panels depending on what area of the country you are in. You might want to google for Esoterix Labs, get their phone number and call for more info.
However, be aware that some of us who have called Esoterix had hit/miss success with them. It all depends who answers the phone. I would say ask to talk directly with a lab technician, not just talk to the clerical administrative person who answers the phone. That seems to be where the disconnect is in my opinion.
Posted by jam338 (Member # 14002) on :
Terry, thanks, through what guidance document source did you first learn how to take the oils internally? Anything I could get on that is why I am asking, especially since you said use caution with it.
Also, Terry did you get the air pump diffuser like the one on the Thieves website? The little glass ice cream looking globe thingy on the brass stand? If yours is different, can you point me to a source comparison online for a picture? Thanks:)
Posted by jam338 (Member # 14002) on :
It woudl breat if someone who calls the call could get the regional panel numbers with diagnotist codes and kindly post them on the thread for others.
I need to call the lab tomorrow to see if Hubby's test is done....will try to ask on the regional codes and post what I learn.
I went to LabCorp for the MSH test wtih Traysalol kit only. They didnt have a clue what I was aksing for or why. they were out and he said htye owuld have to reorder it. and they would call me on arrival. That was a week ago, no call. The technician confided no one there had ever heard of a traysal kit or done one....that wasn't inspriring.
Posted by Jin (Member # 11735) on :
Dear jam338, You are so welcome for the information on those molds! Since my brain seems to be one of the few parts working properly, I may as well use it! I am perplexed, because my 31 kDa IgG confirmation test came back negative. I have an IND on my IgM 41 kDa, and a + on that same band on the IgG. Can I rule Lyme out now?
Sincerely, Jin
Posted by TerryK (Member # 8552) on :
jam - Here is a copy of my response to you about the diffuser question that you asked on the essential oil thread.
I have 2 diffusers. The first one I bought from Young living. They only sell one kind and it is as you describe - glass on a brass stand. I then found another one that is the same type but much more powerful - can saturate a room much better. I think it works better for the mold and mycotoxin applications. This is the second one that I bought and the one that I would recommend. I have no financial interest in any of the products that I mention. http://www.diffuserworld.com/aromapro--essential-oil-diffuser-nebulizer-p-9.html
Sometimes I have them both going, particularly when working on mycotoxins.
jam asked: through what guidance document source did you first learn how to take the oils internally?
It was mentioned to me first from the person who sold me the oil. Didn't pay much attention as I was not inclined to take essential oils internally. Then my herbalist/muscle tester mentioned it to me. Then I read that the oils can be taken internally in several places on the Young Living website. http://www.youngliving.com/oils.faces
Also, the doctor that I saw for mold issues told me to take Thieves oil internally. He told me to put a few drops in a capsule. I've never taken any other brand internally. I would proceed with caution on any essential oils that are taken internally because they can be very strong.
There is a Dr. Richard Lloyd who recommends a product called Detox oil used with a diffuser to kill mold. He is very involved in rife. He is not a medical doctor. I've been reading his inforamtion for a number of years and I think it is good information but may be a bit out there for some people who are not comfortable with alternative methods. http://www.royalrife.com/mold_toxins.pdf
He recommends peach tree extract for mycotoxin binding. I haven't tried it yet but plan to give it a try at some point. Scroll down to the peach tree extract.
My muscle tester/herbalist tested for my specific mold and came up with a program for me using essential oils to kill the mold and remove the mycotoxins. It seems to have worked but I haven't taken samples and sent them to a lab yet to be sure.
Terry
Posted by TerryK (Member # 8552) on :
As far as Labcorp and MSH testing. I called them ahead of time. It took them over a week to get the kit and get everything set up to deal with the testing.
I had to call them several times. Seems like some of the techs are better at handling new and unusual tests than others so if the people at the labcorp office that you are working with can't handle it maybe they can send you to one of their labs that can.
Terry
Posted by jam338 (Member # 14002) on :
Terry thanks for all the help and such great info on essential oils and the diffuser. I am definitely going to give this a try. I haven't been muscle tested for it, but instinct just tells me that it will help me to some degree. I know you know what I mean.
Terry have you tried or noticed a difference in the delivery system of the daffodil bulb glass as opposed to Oil Drop plain design? Is it just aesthetics or is there a functional difference?
Also, instinct suggests that one should likely use a separate distributer glass bulb for each scent or does it matter? Just wasn't sure if it can be sufficiently cleaned with the closed design. The bulbs aren't horribly expensive so it seems doable.
I want to get a separate distributer base exclusively for our bedroom to use lavendar oil at night for hubby. He has been severely distressed with my illness and now the house crisis. He loves the smell of lavendar and likes putting the lavendar oil in a hot bath, says it helps relax him. So, I am thinking the diffuser might be just the thing to help him relax and improve his sleep.
Sounds like I should try and find someone near me who is knowledgeable about essential oils.
Terry, how long of a period do you run the diffuser? Every day? I am sure it might vary based on what you treating. For example treating mycotoxins vs just night time sleep relaxation.
Dr. Lloyd sounds interesting. Years ago prior to my illness I was hugely skeptic of alternative things. OMG has this disease change me and hubby in more ways than one. We have lost faith in traditional medicine, with the exception of a few doctors, and now I am looking more to ancient history options that have been known for thousands of years. There are doctors out there who have stayed in touch with all that. I am in pursuit of finding them now.
Pharmaceuticals have their place in medicine but they have manipulated themselves into being perceived as medicine, not just part of it.
I ordered a book that Bejoy recommended on Flower Remedies and feel there will be something in that for me as well.
Still in pursuit of finding someone with expertise in my area who can give guidance on either. I plan to ask my LLMDs if they know of anyone I can work with.
Posted by bejoy (Member # 11129) on :
I found Myrrh essential oil very effective for mold in the lungs. It stopped the terrible cough. I don't use oils very much though, because they can interfere with homeopathics, which I use constantly.
Posted by jam338 (Member # 14002) on :
Bejoy did you use in a diffuser?
Hey do y'all remember the once popular light bulb diffuser rings from the 70s/80s period? No idea if was effective or just a quick buck marketing tactic. It was promoted for fragrance inexpensive diffusing.
You used a little metal (brass?) ring. Placed it on a regular light bulb and then added a few drops of scented oil. I don't think it was quality essential oils at all. Just inexpensive scented oils, but is the delivery mechanism feasible???
Posted by bejoy (Member # 11129) on :
I don't like the lightbulb rings. They burn the oils and it stinks.
I didn't get fancy. I just put a few drops on a tissue and breathed it, and carried it around with me all day. I'd like to get a nice diffuser, but have not looked at them.
Posted by TerryK (Member # 8552) on :
Hi jam, You asked: Terry have you tried or noticed a difference in the delivery system of the daffodil bulb glass as opposed to Oil Drop plain design?
I don't use the daffodil bulb. I have the oil drop design.
For years I used the essential oil lamp that uses a candle. You add water and oil and heat the water which dispurses the oil. Problem is that you couldn't get enough dispursion and I think a fair amount of the oil evaporates due to the heat. I wanted good saturation for the mold and mycotoxin issue.
You asked: Is it just aesthetics or is there a functional difference?
This is what they say on the website as a description for the daffodil design. I don't see a similar description on the oil drop design.
"The glass piece maintains control of diffusion by acting as a separator of oil particle sizes. Large oil particles are returned to the reservoir while smaller "air borne" particles escape through the top."
Probably means you get more dispursion into the room. The larger particles probably tend to settle close to the machine rather than into the air.
When I called diffuser world to ask about the daffodil design they said it was louder than the oil drop. We already had the Young Living with the oil drop design and it was loud enough so I decided to go for quieter even if it meant less dispersion.
You asked: Also, instinct suggests that one should likely use a separate distributer glass bulb for each scent or does it matter? Just wasn't sure if it can be sufficiently cleaned with the closed design. The bulbs aren't horribly expensive so it seems doable.
Not sure what you mean by closed design. I have one nebulizer for each diffuser. I clean with soap and water between oils and it works fine.
You asked: Terry, how long of a period do you run the diffuser? Every day? I am sure it might vary based on what you treating. For example treating mycotoxins vs just night time sleep relaxation.
I use muscle testing. I run oils and amounts based on that. The plan that my herbalist came up with for getting rid of mycotoxins with essential oils took continous running of the diffuser for 15 days in each room affected. I had to mix oils and change them at given intervals. It was a pain and not cheap. I also had to spray a mix of Grapefruit seed extract, Grapefruit essential oil, Quinine and Vinegar in vents many times over a number of days. Also had to diffuse in the rooms and wash the walls with it. This was after we killed the main strain of mold. She said there was another strain that had not been killed. Keep in mind, this is all via muscle testing. If I hadn't been using it for so many years with success, I would have never agreed to do this complex and expensive protocol.
jam wrote: Years ago prior to my illness I was hugely skeptic of alternative things. OMG has this disease change me and hubby in more ways than one. We have lost faith in traditional medicine
I *think* you mean modern medicine (specifically allopathic) rather than tradional medicine? Modern medicine has been around for about a hundred years. Traditional medicine has been around for thousands of years.
Many of us have lost faith in allopathic medicine and with good reason. We are often told initially that there is nothing wrong, it is all in your head because your blood tests don't show anything that we understand, see a shrink. We are ignored and even called crazy sometimes until we are too ill to function.
Then we are told that they don't really know what is causing our illness but they have some names that they've assigned to a group of symptoms (CFIDS, FIbromyalgia etc..) and we have one or more of those illnesses. Then we are given tons of drugs and told we will just have to learn to live with it. Uhhhh..... you don't know what's wrong but you want us to take lots of drugs and just learn to live with it????? Yes, don't bother looking for an answer or help because there isn't any!!! If we don't know the answer, nobody does!!! Pretty egotistical.
You wrote: I ordered a book that Bejoy recommended on Flower Remedies and feel there will be something in that for me as well.
I have many flower essences and use them for myself, my husband and our dogs. They can be very powerful if you get the right one. The descriptions that come with them are sometimes accurate and sometimes not so accurate. Again, muscle testing works well for this.
You might consider looking for an herbalist. I personally prefer one who muscle tests of course. LOL
Terry
Posted by CD57 (Member # 11749) on :
This is good info. So JAM, you are using the Disaster Kleenup folks and recommend them? I will look them up. Perhaps you could share the name of your guys since we are both in the bay area? PM me.
Posted by CD57 (Member # 11749) on :
Disturbed, my ordering LLMDs office sent me an Esoterix kit with his regional mold panel order form in it. When I took it to Labcorp for the draw (Labcorp owns them) they were mystified as to why I had the kit in the first place. So, just get a hold of one of Esoterix's test order forms and have your doc mark off which ones they want. (Or you can, I added a couple that weren't marked on my form that I wanted tested). Hee.
Posted by jam338 (Member # 14002) on :
Sorry I have not been able to keep up on this thread. Haven't had regular access to internet. But, trying to keep up with reading here as I am able.
We moved from the house to hotel for a week and then into a close friend's motorhome in the driveway.
Very rough start with the motorhome adventure. 3 days without electrical or water. We finally had the motorhome set up correctly and with our essentials and all my supplements etc.
THEN--- we discovered a massive amount of MOLD in the bathroom cabinet!!! The motorhome is only 3 years and in great shape other than MOLD. After some investigation with a flashlight (best way for inspecting for mold), we found the water intrusion point. The sky light/roof ventilator.
The water damage area is very dry and the nails are rusted in that area. Clearly not recent damage. Due to surgeries our friends hadn't been able to use it at all last year so they had no idea about the water damage or the mold. And, of course it is out its warranty period now, and they didn't purchase exteneded warranty provision. Of course, now they are sick over it. They still owe about $65,000.
The impacted area is extensive. The entire shower wall. That wall is a shared wall with the reverse side being the kitchen with the microwave and stove on the reverse side of the same wall. All that will have to come out. I can not even imagine how much that would cost them to fix properly. Unfortunately, he is not handy and with his back surgery problems is in no shape to deal with it. He can't even make it up the step to come in to look at it. Poor guy.
So, after discovering the mold, we moved into our garage/backyard that night. Then, I came down sick with a horrible cold and sore throat within a day or two. I keep wondering can things get any worse, and then they do! I think I need to quit wondering!!!
TERRYK, thanks for all the essential oil and diffuser info. Terry I think you are right in that I might benefit from working directly with a herbalist. There is a herbalist who works closely with one of my LLMDs so I will inquire further at my next appt. Hopefully I will soon be more on my feet and able to get something ordered online. Your guidances will help me immeasurably with that, thank you.
CD57, here is the website of the company we are using:
We are dealing with Jeff Farley, who I think is the President. Thusfar, he seems good to work with. Definitely knows about the ins/outs of mold including sickness from mold as he has had it himself a couple of times. Only time will tell how it goes with them of course. It is still early in the process. But, the first meeting with him went great. It couldn't have gone any better. He spent time explaining things, very compassionate, very knowledgeable about mold, etc.
The company was highly recommended by our neighbor/contractor who has known and worked with them for about 20 yrs.
Their website says they serve 57 California cities:
Allendale, American Canyon, Angwin, Antioch, Bay Point, Benicia, Bethel, Island, Birds Landing, Bloomfield, Brentwood, Brooks, Byron, Calistoga, Clayton, Concord, Davis, Deer Park, Discovery Bay, Dixon, Elmira, Esparto, Fairfield, Hercules, Hilltop Mall, Kenwood, Napa, Nut Tree, Oakley, Oakville, Pacheco, Pinole, Pittsburg, Pleasant Hill, Point Richmond, Pope Valley, Port Chicago, Port Costa, Richmond, Rio Vista, Rodeo, Rumsey, Rutherford, San Pablo, Sonoma, Spanish Flat, St. Helena, Suisun City, Vacaville, Vallejo, West Pittsburg, Winters, Woodland, Yolo, Yountville, Zamora
Not sure if any of those are in your area or not, but they may be willing to venture out if not too far. These days with the economy and the severe hit to real estate and home building in CA, I can't imagine any construction oriented company turning down work.
Posted by bettyg (Member # 6147) on :
jam,
murphy's law still hitting you 2 hard!!
wow to move from hotel to motor home and then MOLD is in bathroom/water area! shaking head...
best wishes to you on your continuous problems; may god come and help you folks out getting you into a SAFE ENVIRONMENT. xox
Posted by emla999/Lyme (Member # 12606) on :
A recent study shows that toxic mold is even more hazardous to your health than previously thought:
" And toxins produced by mold are more potent than was previously thought. It has now been shown, for instance, that mold toxins (mycotoxins) not only directly kill cells but can also affect immune cells in a way that increases the risk of allergies.
Even incredibly tiny amounts of these toxins can do this, as little as a few picograms (a picogram is one millionth of a millionth of a gram)."
Even tiny amounts of mold mycotoxins are considered to be EXTREMELY toxic!!!!!!!!!!
Posted by emla999/Lyme (Member # 12606) on :
A recent study shows that toxic mold is even more hazardous to your health than previously thought:
" And toxins produced by mold are more potent than was previously thought. It has now been shown, for instance, that mold toxins (mycotoxins) not only directly kill cells but can also affect immune cells in a way that increases the risk of allergies.
Even incredibly tiny amounts of these toxins can do this, as little as a few picograms (a picogram is one millionth of a millionth of a gram)."
Even tiny amounts of mold mycotoxins are considered to be EXTREMELY toxic!!!!!!!!!!
Posted by jam338 (Member # 14002) on :
BettyG, thanks for the support and prayers. I must admit at this point I feel "snakebit" for sure. I feel like I am in a living nightmare.
I hope that everyone is taking note of how devastational mold can become to someone with lyme disease. Please everyone, take preventative steps now so you don't risk having to go through this.
I am too sick to cope with or manage with this mold crisis. Problems with everything, and I do mean everything now. The stress is just unbearable.
Posted by bettyg (Member # 6147) on :
i've been learning SO much from all of you contributing to this entire post.
thank you for sharing so openly what has happened to you and each step you took to resolve mold problems. Posted by TerryK (Member # 8552) on :
So sorry that you are going through such a horrible time jam. I hope things get better quickly.
On the bright side, you know why you are so sick now and can take steps to fix it. You are on your way up out of this nightmare!!!
Hang in there.
Terry
Posted by disturbedme (Member # 12346) on :
Jam, we got back the results from the lab who tested the mold in our HVAC/air vent in our apartment.
It was Cladosporium. Here is the picture of it again:
Of course those three colonies got bigger and bigger... but I didn't take a picture of them when they were bigger.
Here's another picture of the molds we found in our apartment.... AUGH:
Posted by jam338 (Member # 14002) on :
OMG, the mold remediator just called my husband with the test results; stachybotyrs along with other molds. The nightmare just keeps getting worse. I am soooo stressed right now!
My husband is on his way over to pick up the lab report along with the remediation repair cost estimates. Needless to say this is going to be huge.
TerryK, thank you so much for the support. You are right, and I keep reminding myself every step of the way with this is a pathway to finding important answers. Although the answers we are getting are horrible and hard to cope with, we are finding the missing critical pieces to the puzzle of my illness.
I really need to find a local good muscle tester and herbalist to work with for the essential oils and diffuser. I just know that is part of my recovery journey.
I also need to figure out Bach Flower remedies to help my husband with his stress which is through the roof. He has never had balanced energy to start with, and the stress of this has thrown his system way off.
We received the results of his Esoterix Mold Antibody results and his levels were low to moderate (1 & 2) on many of the same molds as my test showed.
I think the difference is I have the mold susceptibility gene and he obviously doesn't. He isn't sick.
Some of my LabCorp tests are back with HLA DRB DQB results, but I don't know how to interpret them. C3a C4a and other results still pending.
TerryK, (or anyone) know what the 375 on MMP9 means??
[ 05-30-2009, 07:05 PM: Message edited by: jam338 ]
Posted by disturbedme (Member # 12346) on :
omg..... I am so sorry Stachy is the dreaded 'black toxic mold'.
Posted by jam338 (Member # 14002) on :
DISTURBEDME, Cladisporium is one of the molds that came back on our mold gravity plate tests as well.
Cladisporium is a common mold and not one of the more dangerous toxic molds. However, it can create health problems, especially for someone with the mold susceptibility genetic factor. Especially if that someone also has lyme disease.
Here is a website with information on various types of mold:
These genera of mold are pigmented dark green to black in the front, and black on the reverse with a velvety to powdery texture. One of the most commonly isolated from indoor and outdoor air, Cladosporium spp. are found on decaying plants, woody plants, food, straw, soil, paint, textiles, and the surface of fiberglass duct liner in the interior of supply ducts.
There are over 30 species in the Cladosporium genus. The most common are C. elatum, C. herbarum, C. sphaerospermum, and C. cladosporioides. These fungi are the causative agents of skin lesions, keratitis, nail fungus, sinusitis, asthma, and pulmonary infections. Acute symptoms of exposure to Cladosporium are edema and bronchiospasms, and chronic exposure may lead to pulmonary emphysema."
I think you said your hubby has lung or breathing problems right? If so, and if he has the genetic factor, it could be possible that the mold might be contributing. You would need to check with a mold literate doctor to evaluate whether that amount of Cladisporium could be causing problems for him.
And, of course air spore testing will reveal more information than the gravity plate testing. Still waiting on hubby to arrive home with our lab results. I will be able to post more on how the two testing processes yielded different results for us.
Clearly a significant one was Stachybotrys, the most dangerous toxic mold of them all! It did not show up at all on our mold gravity plate tests. And, we did 2 separate sets of gravity plate tests!
The air spore trap testing doesn't always capture Stachybotrys, but it did in our case. I am guessing that once they open up the walls to survey further and excavate that they will find even more.
Once they open the walls up, then they will test using surface sampling tape lifts and swabs to find the safe clearance areas. Then, all the sheetrock and wood framing structure within the contamination area zone will be fully removed and replaced. All of those areas will have to be full containment protection and the workers in hazmat protection suits.
That is how dangerous stachybotrys, penicillium, and aspergillus is. It is a labor intensive and expensive process.
Posted by jam338 (Member # 14002) on :
Disturbedme, more FYI regarding Cladisporium. Our new lab report (air testing) shows Cladisporium is more significant than the website in my above post tends to suggest it could be. You might want to check a few sources on it.
But here is what our report, through Wonder Makers Environmental Lab in Michigan, states:
"Cladisporium is typically found out of doors, but can grow indoors under the right conditions---usually water damaged areas. Exposure to any type of spore at elevated leves (over 500 c/m3) either for prolonged periods or for repeated short periods of time can cause ill health effects. The possible consequences of exposure to mold sporeas include developing asthma, allergies, hypersensitivity disease and severe respiratory infections."
Posted by jam338 (Member # 14002) on :
The 5 types of mold in levels of concern in our air testing are:
All related to water damage!! Inspect, inspect, inspect!! <yeah, clanging that bell again for those who need another nudge>
Posted by emla999/Lyme (Member # 12606) on :
I am too sick to read thorugh all this... Can soemone PLEASE give me the gist of it....
What test do I need?
What remedies/meds/supps help to detox mold out of the system??
I BELIEVE that this is the BIG piece to my puzzle... I KNOW my house has mold and my illness started while living in a moldy/humid/damp basement apartment.
Any help wold be GREATLY appreciated!
Thank you Posted by LittleLymie19 (Member # 15610) on :
Shandy,
I'm so glad you're looking into this. I believe this could be a huge problem for you too.
I'd start with going to home depot (or a place of the like) and getting a 10 dollar mold plate for each room in your house. It's so important to test your environment, especially if you are bedridden or unable to leave your house.
Then I'm sure someone in this thread could explain to you where to go from there based on the results. You could have the mold sent in to be tested, or you could have someone come out and inspect the house. I think it's best to take things step-by-step though because it's all so overwhelming when you can barely think past breakfast.
I'd also recommend the esoterix IgE and definitely IgG mold exposure and sensitivity test. That'll show if you you're sensitive to mold and if you've had long term exposure.
I hope you are well. Tons of love....
Posted by UnexpectedIlls (Member # 15144) on :
Hello my dear friend!!
Thank you for replying!! I agree... step by step... Where can I get this test and can my LLMD or LLND order it?? If so, where do I tell them to order it from??
Having a hard time being on the computer for more than a minute at a time... EMF's REALLY getting to me..
Thank you
Posted by Faith6 (Member # 14072) on :
This is a very pertinent topic. My daughter decided to clean and empty the basement a few days ago.
I knew it had that basement smell, but not necessarily moldy (dusty and dirty for sure). We now have stuff all over the house and it's definitely affecting me.
What I'm wondering is if the musty smell bothers you more than others around you. No one else seems able to smell it like I do. Sometime I have to cover my nose because it seems so strong.
When I go to my moms I smell it at times when no one else does also. My mom says my dad used to smell it when she didn't and he had some of the same physical ailments that I do.
Anyone?
Posted by emla999/Lyme (Member # 12606) on :
Shandy,
Except for the bull's eye rash, toxic mold/fungi and their mycotoxins can cause symptoms and health problems that are nearly identical to those caused by Lyme Disease.
At the very least I would recommend that you get an IgG antibody blood test for toxic molds/fungi such as Aspergillus, Penicillium, Stachybotrys etc..
An elevated IgG would mean that you have been exposed to toxic mold in the past or that you are currently experiencing ongoing exposure to toxic molds.
Also, since toxic molds are capable of producing mycotoxins you may eventually also want to have your mold mycotoxins levels checked via RealTime Laboratories.
Mold/fungal mycotoxins are EXTREMELY toxic!!!!!!! And mycotoxins also suppress the immune system.
RealTime Laboratories can also perform fungal cultures on your blood to determine exactly if and what kind of fungus is in your blood. Plus they can test for indoor molds and indoor mycotoxins.
Hi Everyone, been too sick to stay up on this thread. Started mold treatment and beginning the journey back. A myriad of things are happening with symptoms. Some slightly improving and strange odd ones erupting. Even things I didn't have before but not sure they are related. Too soon to know.
UNEXPECTEDCHILLS, sounds like you could well be dealing with a mold issue. As others have said start with the Esoterix Mold Panel. Call Esoterix (1/800-444-9111)<owned by LabCorp I think as that is where my bill came from and is where you go to get blood draws done> to find out the right regional area test panel number for your area.
You may need to be persistent with whomever answers the phone; even ask to speak with a lab technician if the person who answers doesn't know. The range of customer responsiveness varies based on whomever answers the phone there. So, keep calling until you get someone who will get you the information.
My LLMD ordered the test. In his opinion the only relevant panel is IgG or it is the only one he cared about. Another doctor (LLND) ordered both the IgE and IgG. The main one for mold reactivity is IgG as the IgE relates more to your body's sensitivity and the IgG relates more to your body's actual exposure.
My LLND said that the IgG levels start to come down within 3 months of being removed from the source of the mold (along with treatment). In other words, levels don't stay static just because you are exposed. If you are re-exposed levels will spike high again. Same is true for C4a levels.
Based on individual body chemistry people tolerate different levels. For example, my C4a was over 9800 (anything over 2800 is high). I developed Parkinsons~like tremors and voice trembling which was my body screaming through my central nervous system for some relief.
When I reached that stage they said I had to start treatment asap. I had been delaying starting treatment because I am now displaced from my house in a hotel while my house undergoes professional mold remediation.
My doctor said she has had other patients with C4a at over 30,000 where they did not exhibit that Parkinson~like symptom. But, I think other things were also contributing to those symptoms for me. This has been extremely stressful and caused my husband to have a meltdown and in therapy. After 4 yrs of me being bedridden and then to learn all this with mold and the house. It was just to much. A person can only handle so much pressure.
I hope others are also evaluating the possibility of mold in your symptoms. I think many of you have clinical diagnosis of lyme could actually have mold sickness.
In my case, I was told by 3 different very lyme literate doctors that my sickness was lyme disease and babesia duncani based on Igenex positive tests on both. However, my PCR test was negative and my urine confirmation test was negative. So, I really think that means that my lyme and babesia diagnosis were actually clinical diagnosis.
My instinct told me something more was wrong. Like a dog with a rag I keep pursuing mold testing. Quite frankly because I had been told by a medical intutive that my illness was primarily caused by mold.
Not sure what (if anything) this changes in their diagnosis of lyme and babesia for me, but all have said that it should be MUCH more successfully and easily treated after the mold issue is resolved.
So, anyone who has treated lyme for years and is still sick or anyone with a clinical only diagnosis, PLEASE evaluate mold risks in your home and/or work place. The symptoms are the same!!!
The Esoterix test is a starting place, but other tests are important as well. If you are paying out of pocket I'd start with Esoterix. The price varies vastly depending on what doctor orders the test. That was a shocker. Through my LLND the test was $600 and through my LLMD it was $120!! Just so you know.
Other tests are the C4a, HLA DQB, MMP9, MSH, VIP, VEGF, LEPTIN, also the C3a complement. However, your doctor will need to know how to interpret the tests. Maybe some experienced folks here can help. Some of the testing values are in Mold Warriors a book by Ritchie Shoemaker, M.D., also discussed in mold books by James Schaller, M.D., but the Shoemaker book is the most comprehensive information in one book. Schaller's info is spread out among several books.
As for testing. I started with the Home Depot gravity plate testing discussed in detail earlier on this thread. I subsequently had air spore trap testing done by a professional remediator (through a lab) and where I learned my house has stachbybotrys. That did not show up at all on the gravity plate tests, which are not as accurate as air spore trap testing. Just so you know. However, gravity plate testing will give you a snapshot look at things for far less money.
Posted by jam338 (Member # 14002) on :
FAITH6, I would say yes regarding your sensitivity. If you are smelling the basement that is your first signal.
All of the books and DVDS I have say first go by your nose. You will smell it before you can see it. Some times you can't see it at all. It is usually BEHIND walls/floors/ceilings.
In fact many of these sources say if you suspect it but can't quite tell on the smell, leave for 2-3 days or a week. Let your nose clear. When you return your nose will alert you to any dangers it senses for your body.
You are likely smelling it because you might have the genetic risk factor. Others who don't have the factor would not smell it as early you do. Make sense?
The problem is that once you have long term exposure is that your nasal passages become so overwhelmed and perhaps swollen that you may no longer be "detecting" well. That is what has happned to me. I can barely breathe through my nose at all and have predominantly become a mouth breather. Mouth breathing alone induces or exacerbates some of our symptoms as it does not oxygenate the body the same as breathing through your nose!!
Posted by Sarah182 (Member # 15774) on :
I have a few questions about this..wow, it's so overwhelming.
I had my house tested with the airtrap method. They told me it was okay because the levels outside were higher than inside, but I had all but one kind of mold in my house. I don't have any that you can see on the walls or ceilings.
The basement is wet and damp though. I didn't have that tested but the guy that came and did the test visually checked it out and said he didn't see any problems.
My LLMD ran the gene tests for mold and lyme and said I have 2 for mold and 3 for lyme. I have no idea what that means. Other than I have trouble detoxing.
He also did allergy testing which showed nothing. My C4a was almost 50,000 last summer, the last time I had it tested it had dropped to about 28,000 I think, but that's still extremely high. He ran the c3a which he told me is specific to mold and that came up normal.
My PCP tells me that my problem is the mold in my house and I need to get out. Unfortunately I have no where to go.
Does anyone know anything about the c-tests and if my c4a could be that high because of mold? No one with lyme seems to have numbers that high.
What does the gene testing mean? My doctor didn't tell me specifically.
What scares me is my cognitive stuff. I hope it's not from mold because it sounds like that may be permanent. That scares me to death.
I just don't know what to do. I feel so much better when I'm not home..wish I could move out!! Thanks
Posted by jam338 (Member # 14002) on :
My LLMD says C4a is specific to mostly to mold but can have some lyme influences I think. Your levels are EXTREMELY high. My LLND who treats lots of mold cases says the highest she has seen is 32,000. Anything over 2800 is high.
So, YES, you have a serious mold issue in your house. Your PCP is right. The guru doc on understanding all of this is Ritchie Shoemaker, M.D. in Maryland. He has book, Mold Warriors which much of the testing information is discussed in detail. He also has free youtube videos discussing a variety of things on biotoxins/mycotoxins. You might want to google and read more.
With C4a that high you might have the mold susceptibility genetic risk factor testable through HLA DQB testing through LabCorp.
What that means is whether you inherited the mold susceptibility risk factors from one or both parents. That increases your risks.
However, I also think it depends on how your symptoms are effecting you. For example, I have the double genetic factor (from both parents), and at almost 10,000 C4a. I have been bedridden for the better part of 4 yrs.
I think symptoms may hit harder for those with genetic risk factors, but not sure about that. Still learning the nuances of it all myself. There is a lot to learn.
What this could mean for you however is that most of your illness/symptoms might be mold, not lyme. Or could be both? The symptoms of lyme and mold illness are the same. So, if your lyme diagnosis is a clinical diagnosis it could very well mean that you don't have lume at all, but might exclusively have mold illness. The symptoms are primarily indistinguishable for the most part.
At a minimum, it means that lyme treatment will not be as effective until you resolve your mold. Mold substantially suppresses the immune system and will present cancer risks, especially if your CD57 NK count is low. NK cells are lowered by lyme and mold.
Mold sickness is treatable, but takes a long time. See my post above on treatment options my doctors are trying for me.
If your basement is wet and damp, therein is likely your problem. Mold loves and needs moisture. In confined dark moist areas it thrives, and indoors develops into toxic mold that can make your family members extremely sick. At highest risk are children, elderly, and immune compromised individuals. Certain molds can cause cancer in the brain, kidneys, liver, and bone marrow. It can be deadly. I hope you address it.
Your C4a levels will not come down until you are removed the source of the mold and begin treatment. Over time once removed from the source C4a can lower on its own, but will take much longer. Even with aggressive treatment my doctor told me to estimate 2 yrs.
Sorry you are dealing with this. I know it is terrifying to hear this, but better to know than to not know! Educate yourself well, lots of great information contributed by many on this thread. It is probably the best learning source you will have to help you orient yourself to risks and options to consider.
Ask questions and several of us will try to help you if we can.
Posted by UnexpectedIlls (Member # 15144) on :
Thank you for all of tis information!!
How do you treat mold illness?? You said you have been treating... can you describe some of those treatments?
Thank you!
Posted by R62 (Member # 18531) on :
Is complement C4 the same as Ca4?
I read somewhere ca3 is for mold and ca4 for brain swelling. This is all so confusing.
Does the exoterix test tell if you have current problems with IgE responses which indicate ongoing exposure in envirmoment and or in the body with the toxins?
Unexpected, I think modifilin is one thing that has been recommended on this thread for mold toxins.
Posted by jam338 (Member # 14002) on :
Hopefully someone more literate in C3a/C4a can help us to better understand these.
I was told C4a is more mold related, but I have been through so much these past few weeks, please don't trust my memory on it. I will ask my doctor to explain in more detail at my next visit (6 wks) and post what he says here. He is in direct ongoing contact with Ritchie Shoemaker M.D. (author of book, Mold Warriors) so I think we can probably rely on what he says about it.
UNEXPECTEDCHILLS, yes I will post what they are doing for me with treatment. I hope it helps others to better navigate their own possible treatment options.
R62, the mold antibody tests that my LLMDs focused on was the Esoterix IgG mold panel. Neither doctors felt that IgE was significant as it does not relate directly to exposure to mold like IgG does. One doc I think only ran the IgG panel. If so, then that may explain some of the differences in costs between the two doctors with the same test. I am too brainfogged to resolve how that varied so greatly, and doctors and labs hold the testing/cost partnership agreement so close to the vest that neither reveal it enough to know that the doctor is making money on the labs. I didn't know that until I learned it here on this board from posts by others.
Esoterix has a regional panel for each area of the country depending on where you live so you need to contact them and find out what the test panel number is for your area of the country.
You may need to be persistent and ask for a lab technician to get through and get the right information. Do not assume the person who answers the phone is going to know or be correct in what they tell you. I have found that the people who answer the phone there are not the brightest bulbs in the box if you know what I mean. It isn't like calling Igenex where the person who answers the phone can reliably answer your questions. Or, it hasn't been on the two occassions I have called them anyway, but I could have called close to lunch when they were on minimal staff schedule, who knows. Just be aware and know that there IS a regional test number for your area. Keep calling and talking with different staff until you finally connect with one who will take the time to look it up and give it to you. The Esoterix lab number is 1/800-444-9111. You will need a doctor's order for the lab draw which will be done at LabCorp and the billing is through LabCorp. One of my blood draws were arranged with a blood draw at another facility locally where we refrigerated/overnighted the shipment to Esoterix so many things are possible though out of their customary practice.
Be armed with the knowledge that the test panel number exists, and be insistent about connecting to someone who knows.
My experience in talking with staff there is they will be adamant about information given to you and be wrong about it. For example, one of my doctors had given me the Esoterix lab blood test kit with shipping instructions and written instructions for the blood draw and processing.
I called Esoterix lab to verify about the overnight shipment and that shipping on a Thrs would be okay and that someone would be there on Friday to receive it. Some labs aren't and say ship only M-W. The staff person at Esoterix did not listen to what they were being asked at all and instead adamantly told me I could not ship at all and that blood draws were only possible through LabCorp where it is a direct shipment process. She said under no circumstances would they give the blood draw kit out to patients. I was sitting there holding a blood draw kit in my hands as I was listening to her tell me that it was impossible. See what I mean?
The doctor who gave me the kit deals in chronolically ill patients who are not always near a LabCorp facility. She has arranged with the lab to have blood draw kits shipped to her for patients to take to any blood draw facility and direct ship to LabCorp. That is not uncommon. All labs do it (Genova, Doctors Data, BioHealth) Many of us are given multiple lab kits to get courtesy blood draws done and shipped to the lab for testing.
But this staff member adamantly told me it was not possible when it was. So, know there is a test panel for your region and hammer away until you find out what it is. I think the problem seems to be that Esoterix is not used to dealing directly with the public. They are not a service feature lab like Doctors Data or Genova who deals constantly with public inquiries. Esoterix deals mostly with staff from doctor's offices. So, that is where the communication disrupt is happening. They aren't geared to answering public inquiry type questions. Most doctor offices who run these tests already know what their regional test panel number is, so they aren't getting many inquiries about that kind of thing.
In my case the person who answered the phone both times seemed to be more of an administrative processing staff person.
Yes, Modiflan is one the strongly recommended treatments by Dr. Mary Beth Short-Ray. Though I have not yet incorporated it into my regimen. It is a brown seaweed extract, known to be used in eastern medicine for detoxing the body. You can buy it in asian markets to put in soups/stews as well. It has no particular flavor to nasty tasting according to some; tastebuds vary. I am wondering if it might not be possible to take the dehydrated version in the asian markets and put in the food processor or a blender to finely chop/mince and then just sprinkle it on food or use in making a tea? Though I am sure it would need to be used in small amounts. It is important to remember that we don't want to overmobilize toxins!! You want to get them out but not stir them up at a level that your body can't get out through urine/stools/sweating/detox baths. Especially since some of us have methylation pathway blocks!!! That means we can only detox eliminate small amounts at the time.
If you over do it, then you overmobilize toxins, most significantly heavy metals, which are known to be pulled from tissue from other body areas and when can't be eliminated risk resettling into the brain and can cause the onset of Alzheimers and other disorders. So, you want a slow, safe toxin mobilization/elimination process that works for your chemistry. Carefully monitor your symptoms and if toxins seem to be overmobilizing reduce your process a bit. It is a bit of a delicately managed dance with your own body.
Your body will tell you and guide you in what is right and what it needs. You just need to open those communication channels and pay attention to things you may have been ignoring for a long time. I definitely did that for years which is why I am in such bad shape. I was a workaholic (as many of us probably are/were). I learned to tune out and override any body symptom feedback.
It has taken a lot of time but I am gradually getting back in tune with my body signalling system again, thank God. If I can do it, trust me anyone can. I had completely turned the switch off for over 20 years.
It has been only through the result of being bedridden that I have been forced to lay here and pay attention to body signals.
That is probably the only thing that would have stopped me and caused me to pay more attention to what is important (my body) not just what is urgent (the next meeting).
For years my body was responding to what someone else determined is constantly urgent (meetings/projects/deadlines) instead of what was really important with my body needs(rest/exercise/proper nutrition). I wish I had all that to do again. I would make much wiser decisions. Once your health is gone, so is your job, and sometimes your family as well. It is a high stakes gamble, but we don't realize that until we get like this. Until then you just keep robbing Peter to pay Paul with your body energy and hope that Peter doesn't run out of energy reserves. One day he will, and that is when it all comes crashing down like what has happened to me. It is a painful life lesson.
Posted by emla999/Lyme (Member # 12606) on :
Apparently, the C3a and C4a peptides posses anti-fungal properties.
"Activation of the complement system leads to a rapid and amplified response which includes the generation of small peptides like C3a and C4a that display antimicrobial, anti-fungal and anaphylactic activity.
Here we report how these antimicrobial peptides are generated during the immune response and summarize the functional mechanisms of these intrinsically generated anti microbial peptides."
Posted by Sarah182 (Member # 15774) on :
Jam,
I'm still confused why my LLMD would run the c3a for mold and the c4a for lyme. I did read that Dr Shoemaker thought the c4a was more for mold.
I can't imagine how my number got so drastically high. That number almost seems unheard of.
I do have some kind of genes that show I can't detoxify mold and lyme. Not sure what they are exactly. I guess I have 3 for mold.
Scary to think that most of my symptoms could be from mold..especially since my brain has gotten so bad. I hope I could get improvement on that. Fortunately that wasn't a slow process, the brainfog hit me virtually overnight. I would think with mold it would have been building over a longer period of time. Hopefully.
Guess it's time to get out of here for sure.
Oh, and I do have a very low cd57.
Thanks for all the information..this is great!
Posted by R62 (Member # 18531) on :
Thanks, jam for all the great info.
I dont understand why the range for my complement c3 and c4 are low and my tests result are in range. The range goes a little over 100..
Those of you who have tested.. did your test give higher ranges into the 1000s or is it that your numbers are into the 1000s and the range given by quest or labcorp (mine was labcorp) is lower?
mine says (lapcorp): Complement c4 reference interval 9-36 result 26 Complement c3 reference interval 90-180 result 122
I do test to have the lyme/mold gene via shoemaker
I also take 6 modifilin a day.
Posted by emla999/Lyme (Member # 12606) on :
You all might find this interview with toxocologist, Dr. Jack Thrasher interesting.
In that interview Dr. Jack Thrasher discusses the negative health effects of toxic indoor mold and the toxic indoor bacteria, Streptomyces, Nocardia and Mycobacterium.
I didn't even know that exposure to indoor bacteria was a problem!!
Posted by feelfit (Member # 12770) on :
Guys and Gals,
CA4 is an indicator of inflammation. HLA measures ability to detox molds, lyme, blue algae, and other mycotoxins.
It is my understanding after reading MOLD WARRIORS that one could have abnormal testing on C4A because of lyme toxins alone and the inability to clear them.
If you have tested positive for Lyme, lyme toxicity could be the reason for your results, not mold...
Feelfit
PS, my C4A is 44,520 after 2 years of lyme treatment. I think I have a lot of toxins to remove!
Posted by seekhelp (Member # 15067) on :
I assume none of these tests are covered by insurance? I guess it doesn't matter as I'm about to toss in the towel on all these lab tests. It can go on indefinitely as there's always another possibility and another..
I really do wish one of my LLMDs, regular docs would've ran the HLA test on me as I've always wondered. I can't get them to do it. Some say the test has no real meaning anyway though so I guess inability to detox is Dxed on a clincial basis.
Feelfit, how on earth do you remove them all? Drink endless wheatgrass? Take 500 milk thistle capsules? Swallow a canister of Cholyestrimine? Wouldn't it be nice if they'd all say bye-bye at once?
Posted by feelfit (Member # 12770) on :
Seek,
The HLA, C3A, C4A, leptin, MSH, testing is all covered by insurance.
I don't know about the mold antibody testing as I have not had it done, but guess that I should. I can't believe that I totally missed this thread until now!!!!!
I also can;t believe that I had a C3A result like the one that I posted and was not told about it....just found it in my labs today. I also found low MSH results. And I have the "dreaded" inability to detox molds, lyme, brown spider, ect.
The guy in FL who ordered all of this stuff, (not my LLMD) was very incomplete in both his explanations and treatment. He gave me CSM but did not remembewr doing so at the next appt.
So I am on my own, with these disturbing results and trying to figure out how to get somewhere in treatment.
It is truly a living nightmare!!!!!!!!!!!!!!!!!!!!!!!! I want to wake up.
Thanks Jam and everyone else for all of this amazing info.
Feelfit
Posted by emla999/Lyme (Member # 12606) on :
Feelfit, the C3a and C4a peptides also posses anti-fungal properties and they can become elevated due to a fungal infection such as mold or yeast.
"Activation of the complement system leads to a rapid and amplified response which includes the generation of small peptides like C3a and C4a that display antimicrobial, anti-fungal and anaphylactic activity.
Here we report how these antimicrobial peptides are generated during the immune response and summarize the functional mechanisms of these intrinsically generated anti microbial peptides."
Posted by CD57 (Member # 11749) on :
Can someone provide a list of ways to treat mold mycotoxis? For example someone medntioned modifilan, someone else said CMS/glucomanna.
I really don't want to have to do another consult with another expensive specialists to treat. I just want to assume I have a problem (based on Esoterix test) and start treating, you know what I mean?
Posted by Sarah182 (Member # 15774) on :
I would really like to know this too CD57.
I'm sick of going to all the specialists and not getting anywhere.
I think it's unfair to give you the knowledge that you have an issue with mold and/or lyme and then not provide a solution.
It's so frustrating..I've tried everything. Besides moving, that's next.
Posted by emla999/Lyme (Member # 12606) on :
CD57 and Sarah,
Here's what I am currently doing to remove the mycotoxins from my body.
I take the following mycotoxin binders.
Cholestyramine(CSM): 1 packet at noon and 1 packet at bedtime.
Activated Charcoal: 1 gram at noon and 1 gram a bedtime.(Sometimes I take even more than this).
ZeoGold (Zeolite): 1 capsule in the morning and then 1 capsule at in the evening. (Sometimes more when I can afford it).
Psyllium Husk Fiber: 1 or 2 teaspoons daily.
Sometimes, I also take some Bentonite Clay with the CSM and activated charcoal.
I am also trying to limit my daily exposure to mycotoxins.
Our diet is a very common way for us to be exposed to mycotoxins. For example grains are often contaminated with mycotoxins. So, I am on a "No Grain" and sort of a low carbohydrate diet for the time being.
I also try to avoid eating meat from animals that were grain fed. I try to eat fish or meat from animals that were "grassfed".
So, I am trying to follow the anti-fungal/ anti-mycotoxin diet described in the book "The Fungal Link".
Also, if you have toxic mold in your home then you would most likely be exposing yourself to mycotoxins everyday. So, if possible then you should try to remove yourself from those mycotoxins or remove the fungi and mycotoxins from your home.
To kill the fungus within my body I take the drug Sporanox (Itraconazole): 1 capsule twice daily. (Taken a few hours away from the mycotoxin binders.)
I also take between 1,000 - 2,000 mg of EGCG daily. EGCG is a dietary supplement and it is also found in green tea. It supposedly makes the anti-fungals work better. EGCG inhibits the Hsp90 protein in fungi.
I also take various other nutritional supplements such as vitamins, minerals and herbs but listed above is the "core" of my anti-fungal and anti-mycotoxin protocol.
[ 06-27-2009, 03:13 PM: Message edited by: emla999/Lyme ]
Posted by UnexpectedIlls (Member # 15144) on :
When you say one SCOOP of CSM... how much is that?? Mine come in packets....
Also, what brand of EGCG do you use?? i have been drinking a lot of Match Green tea....
Thank you for all of this VERY useful info.
I aslo was looking at old bloodwork and my C4a was high... I also have very high levels of CRP inflammation and My WBC's and NEUTROPHILS are ALWAYS high... I only had one normal test for those in 2 years... so I have chronic high WBC and Neuts... also I just had an elevated Basophil which I never had before... My body seems to be in some kind of allergic/fighting mode constantly.. like an autoimmune.. I also have autoimmune markers... so i start to wonder if what I have is autoimmune or LYme>>>
OR lyme and MOLD turning on the autoimmine???
Posted by emla999/Lyme (Member # 12606) on :
UnexpectedIlls,
I am sorry but I meant to say packet because my Cholestyramine comes in packets as well. It's the aspartame free kind.
The brand of EGCG that I am currently using is Teavigo. At the dosage that I am currently taking Teavigo is rather expensive though. So, I am looking for a cheaper brand.
Hsp90 protein inhibitors help anti-fungals work more effectively:
quote: I also have autoimmune markers... so i start to wonder if what I have is autoimmune or LYme>>>
OR lyme and MOLD turning on the autoimmine???
Maybe it's a combination of Lyme and mold.
But it can be difficult to know what's truly causing what because Lyme and fungi and their mycotoxins can cause very similar symptoms.
Posted by bejoy (Member # 11129) on :
As we know, an internal mold problem can be the result of a moldy house.
I have had good success clearing out mold.
First of all we removed all obvious mold from the house. That's a big job in itself, and different with every situation.
Then we left the house for several days. We ran the heaters to dry everything out, then ran a professional strength ozonator 16,000 (cost $400.) to kill and oxydize the remaining spores, along with a strong hepa filter (cost $500.)to pick up any unoxydized mycotoxins.
We did a section of the house at a time to maximize the ozone strength, and repeated each section to minimize reinfection.
Severely affected items of value were placed in a plastic trunk and ozonated for an hour. Bookshelves with books from basement storage were covered with a tarp and ozonated an extra time.
Eighty to one hundred hours of 03 later, it worked like a charm. After that my health and energy improved dramatically, even regardless of the month of rain we have had here.
Big job, but it beats throwing away all our stuff, moving out and starting over, or scrubbing every single item you are keeping, or living with the problem and the illness!
I also had good success with taking an air sample in a glass of water for a week, and making a homeopathic remedy from it.
I don't know all what strains of mold and mycotoxins are in there, but I know I was treating my body for all of them.
Good luck to you all in your recovery!
Posted by UnexpectedIlls (Member # 15144) on :
are then any homeopathic remedies for mold????
Posted by bejoy (Member # 11129) on :
A good homeopathic combination is FNG from Deseret Biologicals. That's one of my favorites, but I'm sure there are many others as well.
Posted by CD57 (Member # 11749) on :
Wow, emla/Lyme....that's intense. Are you....constipated? Sorry if that's too personal. How did you get around this? CSM makes me totally blocked and I hate the way that feels.
Anyone heard of modifilan, a la Dr Mary Beth Short Ray? JAM had a consult with her and she promotes this on her website....it's seaweed.
Posted by emla999/Lyme (Member # 12606) on :
CD57,
At first the CSM and the charcoal caused me to have a little constipation. So, I started to take some extra fiber and now I have at least two bowel movements per day.
I also eat loads of vegetables and drink a lot of water everyday. Plus I take a lot of Vitamin C. So, those things may also be helping me to not have any constipation.
I have heard of the Limu seaweed product but I have never taken any of it. So, I can't say whether it is helpful or not.
Posted by Sarah182 (Member # 15774) on :
Thanks for all the information everyone!
This is an awesome thread!
Would taking all these binders during the day cause an issue with the abx?
I wouldn't want to draw out the meds as well as the toxins. It's so hard to fit everything in during the day..not to mention you have to eat too!!
Posted by UnexpectedIlls (Member # 15144) on :
can you take all these binders while on abx and herbs?? What is a good source of modilifin?? and... Is 2 packets of CSM a day enough?
Also, has ANYONE seen improvement in symptoms?
Posted by UnexpectedIlls (Member # 15144) on :
can you take all these binders while on abx and herbs?? What is a good source of modilifin?? and... Is 2 packets of CSM a day enough?
Also, has ANYONE seen improvement in symptoms?
Posted by bamboo forest (Member # 21066) on :
CSM is much cheaper if you buy it in bulk and not little packets unless you have insurance that covers your Rx.
Thanks JAM for this thread.
Too much CSM can mess with your bile and make you cold all the time. If it was me I would try a more natural binder instead. I did CSM and wished I had not.
Posted by LittleLymie19 (Member # 15610) on :
Hi everyone,
Has anyone ever tried Sporanox?
I'm about to start it but I'm nervous because there's so many ugly warnings on the package....
Hope you are all doing well, or better at least!
Posted by bettyg (Member # 6147) on :
copying emma's link here since we have no idea what this is about except mold ....
breaking it up as necessary for neuro folks like myself so we can comprehend and read it ....
What the Primary Care Pediatrician Should Know about Syndromes Associated with Exposures to Mycotoxins
Ruth A. Etzel, MD, PhD
Abstract
Disease associated with exposure to mycotoxins is known as the ``Great Masquerader'' of the 21st century because of its complex natural history involving different tissues and resembling different diseases at each stage in its evolution.
It can present with a variety of nonspecific clinical signs and symptoms such as rash, conjunctivitis, epistaxis, apnea, cough, wheezing, nausea, and vomiting.
Some cases of vomiting illness, bone marrow failure, acute pulmonary hemorrhage, and recurrent apnea and/or ``pneumonia'' are associated with exposure to mycotoxins.
Familiarity with the symptoms of exposure to the major classes of mycotoxins enables the clinician to ask pertinent questions about possible fungal exposures and to remove the infant or child from the source of exposure, which could be contaminated food(s), clothing and furniture, or the indoor air of the home.
Failure to prevent recurrent exposure often results in recurrent illness.
A variety of other conditions, including hepatocellular and esophageal cancer and neural tube defects, are associated with consumption of foods contaminated with mycotoxins.
Awareness of the short- and long-term consequences of exposures to these natural toxins helps pediatricians to serve as better advocates for children and families.
Division of Environmental and Occupational Health, George Washington University, School of Public Health and Health Services, Washington, DC
Parts of this review appeared previously in reference 16 and in Chapter 16, ``Mycotoxins and Human Disease'' in Microbial Toxins:
Molecular and Cellular Biology, edited by Thomas Proft (Norfolk, England: Horizon Bioscience), 2005, pp. 447-472.
PII: S1538-5442(06)00059-9
doi:10.1016/j.cppeds.2006.05.003
� 2006 Mosby, Inc. All rights reserved.
Posted by CD57 (Member # 11749) on :
Bringing this up to see if there is more info?
Posted by LittleLymie19 (Member # 15610) on :
Like CD57, I'd like to hear more from everyone here as well.
I've begun treatment with Sporanox and I've never felt so ill in my entire life. I think this is seizure activity?
So I'd love to hear from anyone who's been through treatment and I'd like to know what you felt, if you don't mind sharing.
Posted by bigdreams87 (Member # 20493) on :
I wanted to share my thoughts about the issues in this thread and what some of you have gone through, and what I have gone through. I wish I could have seen this 2 years ago. For 2 years I have suffered like many of you have and I think it has been unnecessary.
Mold is probably 1/3 of the way into it. He talks about a propolis vaporizer that will take all toxins out of the air. I just ordered one today and can update you on if it makes a difference or not.
Now to me..
When getting tested with zyto my stressers are 1. emf, 2. chemical exposure, 3. bacteria.
I have been treating EMF, Bacteria and now working on what I think is the chemical exposure, or rather, MOLD.
EMF Waves
EMF disrupts melatonin, serotonin, nervous system, nerve and tissue regeneration and healing, dna, rna, and multiplies biotoxins.
You can watch Dr. K's videos above to learn more about EMF.
I do computer work for a living - I am around computers all day. Including many electronics in my apartment. It's like I am living in a microwave.
To help with this I bought universal chips from bioprotechnologies.com and applied them to all my electrical devices.
Since then some symptoms like tingling and burning has subsided to a large degree and I feel I am healing faster. I have felt a very noticeable physical change, for the better.
BEFORE WE GET TO MOLD - DO NOT MAKE THE SAME MISTAKE I MADE. FIND OUT IF YOU HAVE DETOX PROBLEMS BEFORE ANYTHING! SEE BELOW:
Sulfur Detox Problems
Another important factor which has been making me sick that I want to stress is sulfur.
Through trial and error and then eventually ART I found out I have an issue with detoxing sulfur. This means I cannot take certain compounds that contain sulfur, which many on here are able to take and suggest to you to take! I was trying to treat some symptoms for 1 year! that were caused by me taking supps and food containing sulfur!
Sulfur compounds that make me sick: - Glutathione - nac - epsom salt - bananas - garlic - alphia liopic acid
Examples:
One time I had a glutathione IV and ended up in the er as I felt so sick and toxic and could not stand being in my body for one minute.
Another time I tried to do a liver flush and took epsom salt and I think I was close to having a heart attack, I was ready to call the paramedics.
Treatment so far
TerryK has helped me with learning about the issue. I take Nutramedix Sparga, and RNA a polysacharride sugar from holistic heal and it seems to help.
I am doing a methylation detox panel next week from holisticheal.com to receive a specific diagnosis of what is wrong with my detox capability so that I can correct it through possible supplements.
Some Back Story
I had been living at my parents since last January. I had my own apartment. Aug 08 I came home from a trip to europe.
Upon returning, I had panic attacks almost every other day ( it could have been the issues with sulfa). Like Jam I could not for the life of me breathe through my nose... it was SOOO inflamed.
My Symptoms:
- fatigue and intolerance of exercize - intolerance to alcohol and caffeine - panic attacks - brain fog - skin paleness - stomach paralyzed
This is when I started learning about lyme and babesia.
I tried taking arteminisin, garlic, etc. all of it made me very sick (The Sulfa). So I ended up moving to my parents to help deal with my sickness.
After moving to my parents: - unable to eat - lost 60 lbs - became bedridden - stop working full time
Keep in mind I am 21 at the time, and as my Dad had a tragic event a year before I was financially responsible for my family (4 other people).
Doctors were unable to help me!
What has happened during the last 30 days
1. Address sulfa - 20% of my symptoms cleared 2. Address emf - 20-30% of my symptoms cleared.. still watching the effects
And now...
MOLD
I found this thread about a week ago.
And sure enough, my parents have BLACK MOLD growing in their home!
6 Days ago I moved back into my apartment and away from the black mold
Improvements since moving home away from the mold
- able to walk - new energy - mental clarity - better digestion - feel more like my old normal self than ever!
But I have not escaped mold altogether! there is some mold in my apartment!
- We tested my apartment for Mold, 3 rooms tested were positive - My bedroom was the worst - Both me and my Gf get sick immediately after entering the most infested room (we experienced this yesterday)
Why I think mold has been an issue
Traveling
Whenever I spent time away from my apartment or my parents home, like when I drove out to see dr. f in az, or spent time at my gf's dad's house, I felt fine, almost cured... then I get back home and its like I get slammed with a pile of bricks.
My Bedroom
Both my Gf and I were watching tv in my bedroom yesterday. When we were ready to go eat dinner, neither of us could move. It felt like we had been hit with a pile of bricks. Leaving the apartment lets us feel better.
She will feel sick for 24 hours after if she spends the night.
My Apartment
If it makes me sick now, then it was making me sick ever since I have lived here.
This thread and my plan
I am now all about treating mold. I feel like I am so close to gaining my life back.
What I have done so far - Run propolis vaporizer that Dr. K talks about in video - Run two ultra violet ray hepa filters - Get results on mold test plates - Get rid of mold if I can find any - Cover vents with Merv 11 filters and run fan on ON to stop recirculation of spores - Scrub everything down with borax - Use hepa filter vaccum - Take binders
Since moving home
I can walk longer and further, have more energy, better digestion and can think clearly. This is all too surreal!
Thank you!
It was all because of the people who have shared so far in this thread, 2 years of suffering and now I feel like there is hope.
[ 09-13-2009, 04:01 AM: Message edited by: bigdreams87 ]
Posted by Peedie (Member # 15355) on :
Thanks all for this great information! I'm just starting to read up on Mold along with outher toxins! Jam338 - it is so good of you to take the time to communicate your experience and information. I hope you will fully recover and be well again. -peedie
Posted by emla999/Lyme (Member # 12606) on :
Dr.S and his video interview about mold and biotoxins.
Up for research... Thanks for putting the info here on LymeNet to All involved!!!
Posted by TerryK (Member # 8552) on :
I just found this product. EPA certified mold killer, non-toxic to humans. It crushes the mold. Personally I would still wear a mask because of exposure to mycotoxins.
I called the company and they said it will discourage mold growth if a light film is left on after you scrub the mold off. They also said that it will go into wallboard or porous surfaces some but will not go in far enough if the other side of the wallboard has mold too.
Apparently you can buy it at home depot, lowes, ace hardware etc..
I really like the sounds of this product because it is EPA certified as a mold killer AND it is non-toxic. You can use a fogger to disperse if you need to.
Edited to add: You would want to use a special mask N95 (I think that is the right one). Also, if you are dealing with really nasty mold, please do research and protect yourself and your house from further contamination.
In my reading, it seems important to remove porous material rather than just clean. This is because the mold roots go into the walls etc.. You can't kill them from the surface from what I've read.
I bought his e-books. An amazing amount of great info. They are very helpful for figuring out how to discourage mold and many other tips about how to get rid of it. How to protect your home from mold from the dirt floor basement and throughout the house. Home recipes. Legal info. Lots of other info too. Kind of a cheesy, sales oriented site but good information none-the-less. I have no financial relationship to them.
Terry
Posted by emla999/Lyme (Member # 12606) on :
For those interested.....
The documentary film, "Black Mold Exposure" is now available on DVD. That DVD can be purchased at the website down bellow.
Imagine becoming so sensitive to almost everything you're exposed to daily like common chemicals, furniture, foods, and pollen that it makes you so ill you can't function. You must isolate yourself from others. You become unable to work, the doctors don't believe you, and neither does your family.
You're mocked and you struggle daily to maintain your surroundings and health. Watch this entertaining and shocking film as filmmaker Michael Roland Williams chronicles the agonizing struggle of those who have endured after being exposed to toxic mold.
Most are still overwhelmed with debilitating symptoms years after exposure, while doctors, lawmakers, and attorneys take sides and dismiss their claims.
Black Mold Exposure follows Michael Roland Williams, filmmaker, and Karen Noseff, founder and designer of Fortune Denim, struggling to regain their livelihood and well-being after they were unknowingly exposed to high levels of various molds that had infested Karen's apartment.
The entire 264-unit apartment community was evacuated and closed indefinitely. Michael and Karen claim to have developed allergies and sensitivities to virtually everything, causing them difficulty in finding ``safe'' housing as well as numerous other bizarre problems that have continued over the last five years.
A growing number of people from all ages and walks of life claim mold made them ill while physicians, lawmakers, and medical associations dispute the validity of these claims.
Most of the symptoms of those claiming illness from mold can be caused by, and diagnosed as, any number of other illnesses. There are no standardized methods to measure what molds, at what exposure levels, over what period of time, might cause any given person to become ill.
BLACK MOLD EXPOSURE explores the bizarre illnesses associated with exposure to toxic mold and the film participants' difficult task of regaining their health and lives in an atmosphere of political and social intolerance and disbelief.
BLACK MOLD EXPOSURE is a first-ever look into the lives of those claiming to be ill from mold and the controversial and volatile climate surrounding it.
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