posted
lpkayak, I don't know the answer to your question, maybe Emla999/Lyme might know.
I know one of the mold strains I was tested for relates to candida. I tested very high for it. But, my doctors have not said what to do about it regarding treatment.
It is on my list of questions to ask them whether I should start Nystatin or what.
Right now their primary interest is for me to get relocated without starting anything new, let me recover from the strain of the move, go through flare adjustment, and then start introducing more treatment options.
I'll post what I am told by them about. I hope this thread won't be hard to find by that time though. It if makes it to back pages, I don't have cognitive ability to find it again.
I should send the link in an email to myself just in case.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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On amazon.com they now feature the smaller the Austin Air, Jr size for $300. The ratings say 4 star on it, but I remember reading (and now can't find) where users who had both said definitely get the larger the unit. http://www.amazon.com/Austin-Healthmate-Jr-Air-Purifier/dp/B00029YUAU
I am sure there other HEPA units out there so check around. This is just the one that both my mold literate docs said to get, so that is how we decided.
Costco has smaller more affordable units, but not probably as efficient as the Austin Air. They are smaller and take up less space, but look like a large heater cylinder type thing. Hubby bought those too. He has things all over the place trying to keep this place as safe for me as possible until we can get temporarily relocated elsewhere, and mold remediation can begin here.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
WHAT YOU NEED TO KNOW ABOUT AIR SAMPLE TESTING:
Just roughing this post in for now before I forget to do at all. Will fill it in with more specifics as I think of it.
There are lots of variables on indoor air quality testing equipment. Different types of equipment, different manufacturers,etc. The cost of the units alone can range from hundreds to thousands of dollars.
I am guessing the variances relate to equipment capacity to test residential vs large commercial and with chemical assessment capability in industrial settings, so not just testing for mold spores.
It is important to KNOW that the technician truly knows how to use the equipment. Many don't. Anyone can purchase this equipment online. You can even purchase it yourself and test if you learn what to do.
Key things to interview your technician about to assess whether or not he/she knows what they are really doing:
-Ask what calibration protocol they use with their equipment. If they don't know what you are talking about. Find another testing professional.
Proper home inspectors will know that it is important to calibrate the air test equipment after each every air test location in your house. Not just at the beginning of the job. It has to be done after each sample is taken. It takes additional time to do that. And, many will cut corners. Time is money. If you don't know they are supposed to do that, they probably won't.
-Also, make sure their protocol between air sample testing includes swabbing down the inside of the air tester with rubbing alcohol and let it adequately dry out between tests. Again, takes more time to do it right. The importance is to avoid cross contamination with the air test results.
If they air tested the bathroom where there was stachbotrys, you want that cleaned out before they test the next room so they are not cross contaminating the rooms with carrying stachybotrys into a room that didn't previously have it, AND that there is no stachy residue where the air test in the next room will show stachy but there really isn't any, it was just left in the machine residue.
-Make sure they do an outside control air test as well as the inside tests. The outside control is critical in air testing as you must have a source control to compare against. The mold spores in the indoor air smaples should be at least 3 times lower than the outdoor air. Except in the case of dangerous toxic mold, where there is no acceptable level of it indoor at all.
-Make sure you interview them about the lab where they will be sending for analysis. Verify yourself by looking it up online and ensuring the lab has the right certifications. I'll add more to the post later on what those are.
-Ask the inspector if the lab analyzes 100% of the trace sample or 15%. If he/she doesn't know, consider finding a different tester. If the lab does not analyze 100% of the trace, ask for a different lab or ensure that they will analyze the entire trace. Analyzing only 15% risks missing a lot of possibilities. Many labs only look at 15% because it cuts corners/costs.
I will try to come back here later and post the names of labs that I have read do 100% trace analysis. There were only a couple as I recall. That is not to say they aren't others, it means they weren't mentioned in the all source learning information we purchased.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bettyg
Unregistered
posted
jam, yes, please copy the link and send it to yourself, as daily things on 1st page are on page 2 & 3 IF many new folks sign up at once!
outstanding info you're giving. i'll copy this link to TREEPATROL'S NEWBIE LEARNING LINKS TOO so it can be PRESERVED!!
EDITED: YOU POSTED IT THERE ALREADY...outstanding jam!!
big thanks for everything! *************************
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Lpkayak,
Anti-fungal drugs often have different levels of effectiveness for different species of molds.
For example,the antifugal drug Diflucan (Fluconazole) is virtually worthless for treating an Aspergillus mold infection.
While the antifungal drugs Sporanox (Itraconazole) and Vfend (Voricanozole)are extremely effective against Aspergillus mold.
There are several different species of toxic mold/fungi that one could possibly be infected with.
I don't know what all the different molds are that Nizoral can kill but it is possible that Nizoral was able to kill off some kind of mold that the Diflucan and the Nystatin were not able to kill off.
So, if the Nizoral was killing off mold/fungi within your body then you could have been experiencing a rather strong mold herx.
Or it could have just been some kind of toxic reaction to the Nizoral.
posted
Emla999/Lyme (or anyone), I have another question.
One of the things listed on my Esoterix mold antibody results is candida albican, which is shown to be high, 45.5.
As scored by Esoterix, that is a comparative 3 on their scale of 0-5, but is almost a 4.
A 3 is over 20, but under 50 A 4 is over 50, but under 100
I forgot to ask my doctors about the candida albicans issue. Three doctors have seen the test results, yet not one has commented or made specific recommendations regarding this particular candida albican part of the test.
Can candida albican be a mold or is this likely to be an add on test panel to check standard yeast levels?
I have some compounded nystatin here, but not currently taking it. LLMD stopped it when he stopped all ABX, pending further testing results.
Wondering if I should consider restarting the Nystatin? I definitely don't want yeast to get worse than it is. But, don't know if Nystatin would even be the right thing to take with this particular test finding.
Just fearing that my doctors may be overlooking the obvious with this as they seem to be more focused at this time with getting me removed from the source of the mold, my house.
We are working getting me out of here. Now, waiting for return calls from realtors on rental properties that hubby has been inspecting as options.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Wow...I just kind of had a revelation while you guys were mentioning nystatin.
Exactly 1 year ago, when I was first diagnosed with chronic lyme, my LLMD put me on Biaxin and Nystatin. I became so ill so quickly that I ended up in the ER. I only lasted 10 days on the protocol. I always assumed that it was my reaction or herx from the biaxin, but it could have very well been because I was hitting fungal or mold related infections with the nystatin. I haven't been able to tolerate any conventional treatments since. It's been a year of struggling just to stay out of the ER. I can't detox, and can't tolerate anything that goes after infection. My organs can't handle it.
I do have an Igenex postive on my IgG for lyme, but it was my only positive and it wasn't CDC or a very "strong" positive. My mold testing on the IgG panel actually came back stronger. My doctor only chose 7 molds to test for, but out of the 7, I had a couple of really strong positives:
Does anyone know anything about these particular molds, what they can cause, where they can be found, or if nystatin goes after them?
Thank you again for this post you guys...it's eye opening and quite mind boggling. It's so odd how my diagnosis of mold poisoning/toxicity/exposure came at the EXACT time this thread popped up!
Jam...I'm still working on that email to you My cognitive symptoms are so awful, it takes me forever to type anything out...and what I'm typing to you is a practically a novel!
Hope you all are well.
Posts: 710 | From West Coast | Registered: May 2008
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quote:Originally posted by jam338: ORGANIC ANTIBACTERIAL CLEANING PRODUCT: BENEFACT
R62, thanks for link earlier on the BENEFACT, I totally missed that I think! Thank you as I didn't have a source for where to get it. I think one my doctors might be looking into resource linking it available on her website.
I found only 3 links for it online, the one you gave looks maybe to be the cheapest, especially with it on sale until May 17th. The small 4 oz pump bottle size is 50% and is $3.99. The gallon size is on sale for $39.99. Since it says use full strength, it will take a lot of it, ugh. I wonder how much it will take to do an entire 2,800 sq ft house?? http://householdtraditions.com/benefect.htm
My doctor said use Benefact. One of the DVDs or you tube clips we watched says use PINKROBIAL soap, and another talked about a Fosters antibacterial product. There has been a few different ones mentioned, mostly chemical of course.
I am reasonably sure the last 2 are likely chemically laden products which may be ok in househoulds without chronic illness/compromised immune systems. But not for us with this disease.
I think go with the BENEFACT, a natural substance of Thyme Oil, as recommended by one of my environmental docs.
She says anyone with chronic illness should not be exposed to chemicals. No one should, but especially not us.
Not sure what is in them or how they compare cost wise to the BENEFACT (thyme oil); but both are organic options.
I love Benefect. I use it to clean the bathrooms. It smells so good. I didnt know it also was good for mold.
With Tropical Traditions.. if you can locate a local co-op, you can save lots of money and get at wholesale. Maybe you can create one? They have other nice items as well. I have a 5 gallon container of their coconut oil here.
I didnt think to use it in our shower that get mold.. my dh cleans it because of the scrunning required.. I'll give him the benefect next time.. and thinking to try out the product link you have here. Thanks:-)
As for how much.. ??? I purchase by the gallon because I am part of that buyers club and get it cheaper that way.
Posts: 861 | From USA | Registered: Dec 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Great post.
I wonder if those of us who have the HLA genotype would get accurate test results with mold testing?
I ask because theoretically we don't make enough antibodies to remove mycotoxins effeciently. I wonder if these are the same antibodies that are used for testing? I assume they are but don't know for sure.
If they are, does this mean that even if we have low antibodies, we could still have lots of mycotoxins in our system?
I have yet to find an answer to this question. I'd sure appreciate any thoughts on this.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Jam338 said:
quote: Can candida albican be a mold or is this likely to be an add on test panel to check standard yeast levels?
Candida albicans is included in most fungus/mold panels because Candida is actually a fungus. All yeast are a form of fungus and all mold is a form of fungus. Antifungal drugs are effective against Candida because Candida is actually a fungus.
posted
TerryK, maybe others can answer more for you, but here is what my doctors have said thusfar. I am not sure if any of this clearly answers your questions though.
My doctors have said those with the genetic susceptibility factors will be the ones who have the highest mold risk factors.
They believe this so strongly that all of said they have no doubt I will test positive for the genetic risk factors just based on my high antibody response levels to molds.
None of my doctors mentioned any concerns about genetic susceptibility factors adversely affecting accuracy of testing. That of course does not mean that it doesn't. It just means that I really think that one of the three would have mentioned it if it did. But, you know how that goes too, sometimes if you don't ask the right question, then you don't receive the information.
My LLMD says the genetic susceptibility factor is very useful to test for whether or not one suspects mold as part of the problem.
He says in his experience he has learned it is a good indicator of what to expect with lyme treatment effectiveness response. And, he feels it is useful guide in pacing treatment process.
I think he may only do it for lyme patients who are the most severe and bedridden, but not sure.
He further said it helps him in gauging the limit line factors of the patient's capacity to detox die-off; critical to know for patients at my level.
If I correctly understood staff's explanation, the mycotoxin test (C3a/C4a) is an entirely different panel from the mold antibody panel. Though both are through LabCorp.
I think (but don't know) the C3a/C4a LabCorp panel is a customized panel originally developed for Ritchie Shoemaker, M.D.
However, Dr. Shoemaker gives very specific guidance on his website and in his book (Mold Warriors) and says be sure to tell LabCorp staff to send your C3a/C4a test only to the testing lab at National Jewish Hospital in Denver. Apparently they have a choice of testing labs to ship to.
Dr. Shoemaker says the Denver lab is the most accurate. I recall my LLMD's office staff mentioning something about the Cambridge lab, which I think is the other lab(?)
There is further neurotoxin/biotoxin/mycotoxin illness info on Dr. Shoemaker's websites below. I think the first one is the one with lab testing info, but not sure, it has been awhile since I was on either:
I will verify with my LLMD about which lab to send my blood draw and update this thread when I get an answer.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Dear jam338, Thank you so much for all of this terrific information! I am sure we have mold issues. We live by a river, and often have flooding and tornadoes. My father says "There is no such thing as toxic mold, and if so, we do not have it." In January, we had to go stay at my grandparents' former apartment. There was an ice storm that knocked out the power for several days.
I actually did not feel like passing out as much while there after a little while. I know I have a raging case of Candida, which makes me highly sensitive to mold. My brother did not have near the cases of Bronchitis I had. I used to get it every year, and sometimes twice. Mom and Dad had a ranch home in a nearby town at the time he was an infant.
I was in the house in the womb since it was built in 1978. My grandfather always said he thought the house was making us all ill. I honestly believe there is truth in it. When I was at the apartment, I felt better. Two days after coming home, I began feeling exhausted and weird all over again. The stomach issues were still there, though.
We also had a rabbit with Pasteurella. This particular parasite needs a humid environment. Our poor bunny was down in this basement, where the humidity is very high. At times when it rained, the rabbit's cage would have condensation on the walls. Despite our best efforts in keeping the cage cleaned out and giving him Baytril, as well as using a dehumidifier, the parasite took over.
I am afraid if I do not find a source of income, I will die! One of my classmates in college lost a kidney due to being exposed to mold in her workplace. She went to a toxicologist for treatment. I desperately need to move out. I tried to explain it to my parents, but they refuse to listen. Affordability is a major obstacle, but they are also stubborn.
We all have sinus and allergy issues. This may explain why no allergy medication ever has worked for me. I also suffer from migraines. I really need to find a way to get out of here! I have done research on toxic molds, and know they are linked to lung cancer, stomach ulcers, and many other conditions. Does anyone have any ideas on how to get help?
emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Jam338,
The lab that my doctor used had a 0-4 category scale. The categories were 0,1,2,3,4.
But category 3 on my lab report is anything over 10 but under 30.
And a category 4 is anything over 30.00
So to me, a 45.5 for Candida albicans seems high. Even based upon Esoterix's scale your score of 45.5 is rather high.
My score was a 100 for Candida and my doctor wants me to start treatment as soon as possible. Diflucan (fluconazole) is the antifungal that my doctor recommended. But I believe Nystatin also kills Candida albicans.
But in Dr. Constantini's book,"FungalBionics", he didn't seem to worry too much about Candida albicans. Instead he seemed to consider other fungal infections such as Aspergillus, Penicillium, Fusarium etc. and their mycotoxins to be much more harmful to people's health.
But I am going to try and get my Candida antibody levels to come down.
Posts: 1223 | From U.S.A | Registered: Jul 2007
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posted
Dear Jin, oh my goodness, I am sorry for your situation honey. Wish I had answers for you. I have a few thoughts to share for your consideration, but no real answers. Just tips to help with making your existing situation as healthy as possible until you can afford to move.
Yes, toxic mold has very serious health risks, especially long term exposures like I have had. My doctors say it can cause permanent brain damage, liver cancer, and kidney cancer, along other very serious organ problems.
Needless to say, I am terrified about what damage mold may have done to me that can't be changed.
Jin, you are wise in doing your research and becoming aware of your risks, kudos to you for that!
Awareness is always the first step to Action!
Try to get your immediate living space (your bedroom) as safe as you can get it.
There are things you can do to at lessen some of your exposure. 20-Mule Team Borax (any Walmart) is cheap and will kill some of the mold. Carefully wash down your walls, floors, ceiling (if possible).
Make sure your room is as clean as possible, free of dust. Dust is like a magnet for mold spores.
There are small portable HEPA filters you buy for a small area. Austin Air has a Health Mate Jr, for around $300, but Costco has HEPA filters for 1/3 or less of that which would probably work fine for your room. Even if you could only get a small $40 unit, anything that cleans the air quality of any mold spores is better than nothing.
If your dad doesn't have awareness about mold, then he may not be regularly changing the household heater/air conditioning filters. Not good, and that air is circulating all throughout the house, including your bedroom.
Not sure what the temperatures are like where you are, but if you can close off the vent to your bedroom. Put a piece of plastic over the vent. You can either tape it using blue painters tape so it doesn't damage the paint surface or remove the vent plate and put a piece of plastic across it and replace the vent to securely hold the plastic in place.
The bedroom is the one room where most people spend the most time (hours of sleep). Less time is spent in any other room. So, the bedroom is the one single room we should be most fussy about cleanliness. However, since no one usually sees our bedrooms they can be the rooms that are least attended to.
Obviously, you know you need to be in a healthier living environment. Just do what you can for now to make your current living environment as healthy as possible for you.
Hopefully, you can convince your brother to do the same in his room.
I was going to suggest considering the Citrisafe organic candle option ($100) to kill mold in your room, but I don't yet know enough about it. It can be ordered online.
But, here is the problem I have been told. Yes, there are organic things that research shows kills mold, but dead mold spores behind walls/floors, ceilings still needs to be cut out.
Dead mold spores are dangerous and produce health risks too. I don't yet know if they are as dangerous or maybe even more dangerous. I am clueless there at this point.
The advantage in killing the mold is it stops it from spreading and becoming a GROWING problem. Killing it will at least contain it, stop the spread of it, but you still have to figure out how to get it out.
That part isn't easy and it is very expensive process as means removing sheetrock, and sometimes replacing affected wall studs.
That is why some people who learn they have a mold problem just paint over it and move. An unspecting new home owner or renter is clueless that a mold problem lurks behind the walls, and many home inspectors won't detect it unless there are visible clues that cause them to go out to the truck for the inspection tools.
Jin, please stay vigilant about your mold situation. Long term mold exposure, especially if you might have the mold genetic susceptibility factor, is very bad.
My doctors tell me that eventually those with the mold genetic susceptibility factor who are exposed long term to hidden or visible mold have a high risk of ending up like me, bedridden.
As hard as the many challenges are to deal with assesing and resolve mold factors, those with the genetic factors...you have no choice. You have to do it. Address it or remove yourself from the mold exposure now. I wish I had known that or someone would have told me that 5 years ago before I got like this.
One of my doctors who has dealt with many lyme disease (with and without mold sickness) patients said her experience is that anyone with lyme disease who is bedridden very likely has undetected environmental problems (usually mold but can be other things with chemicals in constuction materials, etc) n their home.
[ 05-12-2009, 05:52 PM: Message edited by: jam338 ]
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Here are a few interesting studies about toxic mold, mold mycotoxins and the potential implication they have in the development of disease.
Can low level exposure to the mold mycotoxin, Ochratoxin-A, cause Parkinson's Disease?
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Jam, Thanks for your thoughtful response. I've looked through Dr. S's work but have never seen anything that addresses the HLA testing in conjunction with mold antibody testing. As far as I can tell, he doesn't test antibodies for mold in people.
This may be one area that he is missing and possibly why some people with the dreaded genotype don't get well??
I had testing done 3 years ago at Immunosciences Lab before they stopped doing testing. These were ELISA tests for IgG, IgM, IgA and IgE for a number of molds. I had antibodies to every mold but they were within reference range which means they were not considered abnormal.
I do have the worst HLA genotype for mold, borrelia and spider bite toxins. Really makes me wonder if antibodies would be a lot higher if I could make antibodies to the mycotoxins.
I do have mold in my house so all of the info you've provided is helpful.
My husband and I worked very carefully (after doing considerable research) on killing the mold. The problem is that while killing the mold will stop production of more mycotoxin producing mold, it does not get rid of the mycotoxins that are left behind.
My muscle tester had me use essential oils and diffusers (with motors on them) to get rid of mycotoxins. It was not cheap and it did take a long time because I had 4 different combinations of essential oils to use and some of them had to be diffused for days. This had to be done in 4 different areas plus we had to spray stuff in vents in one bathroom for days.
I'm getting ready to do mold testing now to see how well it all worked. I may use bejoy's solution of ozone if I have further work to do although my research indicated that ozone wasn't effective. It appears to have been effective for her though so it's worth considering.
One more note: I got the weird black fungus on my tongue from tindamax. My doctor put me on an anti-fungal (sporonax). Interestingly, the only time I've been able to lose weight was on prescription anti-fungals. No amount of calorie restriction has helped. I've lost 4 lbs since I started this anti-fungal. Hopefully that will continue.
Seems odd though because if mycotoxins cause weight gain then you would think killing the fungus would cause weight gain due to increased mycotoxins. sigh It's hard to reconcile it all logically it seems or maybe I'm missing something.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
OH NOOOOOOOOOOOOOOOOOOOOOOOO.......
My hubby and I did TWO mold plates so far.... we have mold growing on one of them!!!!
We tested one in the living room, which came back clean... but the one we tested the air/heater fan with has mold spots. Aughhhh.... Not sure what that means now. It means there's obviously something growing in the air/heater ducts or something. I was hoping we'd have no mold issues because our landlords are LESS than helpful with other issues... and I can just guess how they'll take this news.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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I have read online about the organic oil diffusing, but can't remember the site. I think I may have saved the information somewhere. The problem is with my cognitive issues is trying to find things later.
If you can actually see mold, you can estimate that there is at least 10 times or more mold on the other side of the wall where you can't see.
I think (but not sure)DrS's test on C3a/C4a tests mycotoxin levels. Not sure whether he tests genetic markers etc. Not yet done with his book, but it has been strongly recommended by all my mold literate doctors.
Terry, regarding the weight factors you mentioned, have you had your MSH levels checked? Various things can lower it, including mold...probably lyme too. If your level is under 35, then it could be a factor in affecting weight. It is written about in Dr. James Schaller's Mold book.
Hmmm, wonder if the black tongue Tindamax factor might not be related in some way. Could be something that others who have experienced it might want to look further into about evaluating your home/work environment about mold.
I have never been on Tindamax so can't say. I am a long way from being "lyme treatment ready", but hope I remember that in case they ever want to put me on Tindamax.
Terry, I really hope you pursue the resolution about mold. If you know your house has it, it has to be addressed. Especially if you have the genetic risk markers.
PLEASE DO NOT WAIT UNTIL YOU ARE LIKE ME. My life is in a huge crisis now. Not only do I have the health crisis, and lost ability to have independent living capability, but now also have a huge crisis about my living environment.
Please, do all that you can to resolve the mold issue before you get to this stage of disability.
You are now armed with lots of guidance information on this thread about next step considerations.
Terry, you have done your homework well. You already know that you can't just kill the mold. You have to get it out.
Dead mold still has mycotoxin factors, especially dangerous for those of us with genetic risk factors.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
WHEN MOLD REMEDIATION MAY NOT BE AN OPTION:
If mold remediation is not possible for whatever reason(s) consider purchasing an effective portable HEPA air filtering unit that removes mold spores from the air.
Make sure you get one large enough to do the job. I can't recall the sq. ft. guidance factors about that, but I read it online before we purchased ours. That is why we bought 2 (one for each floor).
The other thing we are going to do is get one of the air recuperator systems professionally installed in our home. It allows you to dial in a balance of "positive/negative" air pressure exchange.
The goal is to have a negative pressure system inside your house. It may be possible to just buy a negative pressure air exchanger or a commercial air scrubber.
I saw a YouTube clip where a guy with some skills and knowledge had even made his own air scrubber system in his basement and then ran the piping ducts up and somehow adjoined into all into his air duct system. Wish I had bookmarked that dang clip, sorry.
I still have much more to learn about what to do regarding post remediation protection measures.
The whole issue of the HVAC system is a HUGE consideration if you know you have mold in your house. If it is in your house, guess what? It is also probably all in your HVAC system. That is whole other post just on all that.
You have to be very careful about what you use to clean it. Most HVAC duct cleaners are not mold literate, though they will say that they are.
The professionals don't agree whether to clean or not clean the HVAC ducts. Chemicals can initiate a degradation of HVAC duct system. But, IF you have mold in there is a problem.
You can spend thousands on mold remediation of the water damage source areas. Flip on the HVAC system after the repairs are done, and wham you just put mold spores back into your living environment again.
I am thinking (but don't yet know) that might be addressable by renting commercial high powered air scrubbers. Turn them on high, turn the HVAC system on, and the mold affected person not return to the house for a period of time, maybe 3-4 days or a week. Just not sure yet on that part of things.
My doctors have told me that we will have to have a special air system wherever I live for the rest of my life. That is because of the genetic risk factors, the long term mold exposure, and the level of sickness it has caused/contributed to.
However, please note the recuperator air system doesn't treat or remediate mold at all. What it does is changes the air pressure inside your house to negative and forces air pressure towards the wall. That's it. It keeps more mold spores in the wall so they aren't released into your breathing air space.
In other words, it only lessens things. It does not resolve things. The only way to fully resolve mold is cut out it and remove it.
But, there will always be some spores that get missed. With ten thousand mold spores that fit onto the head of a pin, logic dictates there will be some that get missed in remediation.
There are many failed remediations where people get sick again and can not live in their house after having paid thousands of dollars to resolve mold.
One of my doctors just moved out of her house after full mold remediation 3 times. Her house is safe enough for someone who does not have the genetic risk marker to live in. It is not safe for her to live.
She said if she had to do it again, she would have just moved to start with and not have gone into thousands of dollars in debt for a house she can't even live in.
In fact that is what she recommended to us; MOVE. Maybe we should. We may ultimately have regrets that we didn't follow her advice.
I am not well enough to handle a full house move. The economy is horrible. My house is now worth half of what it was 2-3 years, ago.
Unless we buy a new house (something we can not afford to do), moving could result in only changing addresses and still be in a water damaged house or apt. So, the problem would not be resolved.
So, at this point, it seems that the thing for my husband and I to do is:
1-remediate as extensively as we can
2-get the air recuperator system to deal with any residual mold
3-perhaps consider the ozone treatment unit that Bejoy has kindly shared she is using finding is effective in her situation. While ozone shocking is debated among the mold world industry, so is all the rest of it. Do your own homework and make your decisions.
We think Bejoy has a good option that we will probably do after remediation. The outdoor box containment shock ozone treatments of household goods to help keep spore counts down.
Some remediators and insurance companies say "throw all your household goods away; start over". Understandably their recommendations are liability protection oriented, though perhaps not practical, and may not be necessary.
There is no way of knowing for sure. You can do "tape lift" sample testing but that only tests 3" of an area.
Mold spores collect into dust which then falls to the surface of drapes, furniture, carpet. You can't lab test every square inch of your living environment, so there is always a chance mold didn't fall to the area you tested.
But, you can HEPA vacuum everything as well as you can, and thoroughly and carefully wash down walls, furniture, floors with 20-Mule Team Borax or a research tested and known mold killer, which is not the common ones you see advertised on TV.
I am still learning on the products to use. Experts don't agree on that either. My theory is when experts don't agree on new things look to the old tried and true things that have been used for many years and known to be effective.
All the patentable product research controversy can get in the way of really getting the information you need.
I wish I had known then what I know now. Wow, how often have we all said that about something in our lives?
Don't let one of those times that you will be saying it be about not having properly assessed or addressed mold risks.
If you wait until you reach my level of disability, trust me, your life and your health may be totally wrecked. Mine is. But, I am determined to not go through this without there being a lesson in it for others. Too late for me, but maybe not for you.
Now I am trying to manage a crisis of this magnitude (my living environment) when I can't even stand up long enough to brush my teeth so how am I going to be able to do anything else?
Dangerous mold can cause PERMANENT brain damage, liver cancer, and kidney cance and other really bad things. This is not anything to not take serious. This is not about a little inconvenient mildew. It is TOXIC mold that poisons your entire body and damages your organs.
This is not an issue of should you do it. It is an issue of HOW you do it and what process you will you follow to do it; or, risk living with the possible very dire consequences.
My horror story should be enough to motivate reasonable thinking people into action to protect you, your family, your children from harm.
If you don't do it for anyone else, do it for your children's sake.
There have been 2 posts on this thread from kids about their parents not knowing, not caring, not making good decisions about mold risk protections.
Don't become one of those parents. Your kids deserve to live in a healthy living environment. It is your responsibility as a parent to provide it for them.
Please think about this when you kiss your kids and tuck them in tonight. I want you to be able to dance at every wedding, enjoy every anniversary, holiday...all of it. Things I can no longer do. Why? Toxic mold. It could have been prevented. It wasn't. We didn't know. But, now since you are reading this thread, you do.
I truly hope everyone will carefully think about this and do what is best for you and your family.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Oh my god!! This issue about Lyme is amazing.
I have been sick since 04,diagnossed with lyme in 06 and been on different treatments since. doing so much better. actually feel like i am going to live.
recently i had a friend question why i was never allergy tested. spoke with aN ENT and he sgreed.
i was grossly positive to 12 of the 20 molds they tested me for. not much else. my candida mold went from 9mm(normal positive) to 50x60mm in 3 days-itblistered and was oozy. thought i had a cellulitis.
so i started allergy shots at 1:500 dilution. i developed bad respiratoty distress. tight wheezing. my arm was on fire. long story short-i've restarted my shots-once a week at a 1:5000 dilution. my ent says if this doesn't work he will have to concult out of state.
i find it very interesting that these threads about mold have shown up. things always happen for a reason,
great info. thanks a lot!!!
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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posted
Disturbedme, don't panic just yet, you aren't sure what type of mold it is! It might not be a dangerous mold.
Most testing instructions I have read say to test with HVAC on. Some say do 2 tests, w/fan on and then off.
I think maybe they are trying to see if it is in the HVAC duct system. That could be more significant in housing like apts if there is a shared HVAC system. Something coming in from outside of your own apartment.
That said, unless you get the plate analyzed at the lab you won't know what species of mold it is or whether or not it is dangerous toxic mold. Can you describe what the mold looks like? Hard to do I know.
For example, is it green fuzzy with an outside ivory colored outter ring, or is it white with tourquoise inside?
As nearly as I can tell from looking at mold plate pictures online those 2 MIGHT be aspergillus and pencillium molds; caused by water damage somewhere.
Those are the 2 primary ones that I remember from our 1st plate testing, but that set of tests were not lab analyzed. We had other types as well, but those 2 seemed to have the largest colonies.
Whatever they are, they greatly concerned my doctor who wanted them lab analyzed. And, my penicillium and aspergillus mold antibodies are very high, along with several others.
Our 2nd set of plates are at the lab for analysis now, so I will know exactly what it is in a week or so.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Jam - I have a picture for you. They are green inside with white/ivory outside ring. This plate was from the heater/air vent/duct fan....
Here's a picture. We wrote fan on a piece of paper and sat the plate on top of it the night we did it so we wouldn't get the two plates mixed up. You'll see three mold dots. The harder to see one is, right now, just a white color on the letter F:
Should we have them analyzed? We were going to send it in to have them analyze what kind of mold it is.
I was hoping we had no mold in our apartment. We went to Home Depot and got another two test kits so we can now test the bathroom and kitchen and see what those come back with. The plate we put in the living room came up clean with no mold growth on it still.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Disturbed- that isn't bad at all. When ours came back for our kitchen and storage room, the plate was almost completely filled with mold. I'd really suggest that you get the mold plates for your bathrooms and kitchen.
Posts: 710 | From West Coast | Registered: May 2008
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Though impossible to tell from just a picture, it looks like the green mold is the same as in my tests, except that I had more numbers of colonies (more spots of growth).
The white spot could be the start of the same white mold I had as well.
That said, there is not a high concentration of any spores on the plate. That is good, but if it is a dangerous toxic mold species, even one spore can make a person with genetic risk factors very sick.
When did you do the test? Did you incubate the dish? Meaning, did you wrap it in foil (dark) and put in a drawer or cabinet? It needs to be incubated for 3-5 days. We did ours for 4 days.
The incubation period gives it time to grow out. If you did not sufficiently incubate then, you could have more that haven't yet bloomed out. And, of course the ones there would be bigger after sufficient incubation period.
The living room would typically be the least likely room to have mold growth. That room does not have a direct water source (plumbing)coming into the apartment. But, living rooms can have window leaks (rain) and ceiling leaks from the roof (rain).
The kitchen and the bathroom have direct water sources (plumbing), and are the most probable areas to suspect when evaluating for water damage. Also, the drip pan under the refrigerator can grow mold, especially if there has ever been water damage in the kitchen.
The spores in your living room could have been spread from the kitchen or the bathroom. You won't know for sure unless you test those areas.
Don't expect that your landlord is going to be supportive or care. They may already know. If water damage happened before you lived in the apartment, they know. They had to repair it.
That doesn't mean that they know the dangers about toxic mold. Most people don't.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Emla999, thanks for the feedback on the Candida factors.
My doctors have responded consistent with what you said regarding Dr. Constantini's book,"FungalBionics" where he didn't seem to worry too much about Candida albicans. Instead he seemed to consider other fungal infections such as Aspergillus, Penicillium, Fusarium etc. and their mycotoxins to be much more harmful to people's health."
My doctors (including 2 naturopaths), thusfar, seem to look it as "we have bigger fish to fry to here". I don't get that. All of us know that yeast can cause lots of problems and contribute to gut dysbiosis/leaky gut.
It just feels to me that I should be taking something for this so it doesn't get worse.
They aren't treating the yeast, but say I need IV supplements because leaky gut is not allowing proper absorption of nutrients.
It only makes sense to me to treat the yeast, then maybe the leaky gut might not be as severe.
There are about 5 doctors total involved in my care; 2 are naturopaths. Yet, none of them are prioritizing the yeast.
I need help in understanding how much of a factor Candida is regarding gut dysbiosis/leaky gut, which has a direct impact on our immune system and its ability to heal us from any illness, whether lyme, virals, coinfections, mold, heavy metals, etc.
To me, it seems that this Candida thing should be a high priority to fix. How can the rest possibly get better without fixing it? It is like having a hole in the bottom of the boat and trying to bail it out with a bucket while it keeps filling back up again.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
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.
emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Jam338,
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.
Posts: 1223 | From U.S.A | Registered: Jul 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
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.
posted
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.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
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.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
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.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
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.
Posts: 1223 | From U.S.A | Registered: Jul 2007
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posted
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.
posted
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.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
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.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
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.
posted
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:)
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bettyg
Unregistered
posted
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
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Here's a list of "MOLD LITERATE MEDICAL DOCTOR's" aka MLMB.
posted
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.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
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!!
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
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!!
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Jam338,
A documentary film about toxic mold induced illness has already been made. The documentary film is called "Black Mold Exposure".
posted
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..............
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
Thanks to all who continue to contribute to this thread to help! Please keep up the good work!!!
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bettyg
Unregistered
posted
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.
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posted
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;)
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