I'm trying to get my arms around the testing protocol used by Dr. S who wrote Surviving Mold (famous guy).
I went to his website and read as much as i can. The testing is crazy confusing. I really think I need to understand if mold may be a big issue for me given my allergies to it and the fact I feel much worse during damp weather. I also suspect a few water leaks in my home. I have never had a doctor give this any consideration.
I want to push for help on it.
I see tests such as HLA-DR, VIP, MSH, MMP-9 and others on his requsition sheet. I can never beg a doctor to run something I can't even explain. I do feel this HLA test is crucial to run to prove/disprove I have the bad gene for detoxing. I just want to triple check with my insurance to make sure it would be covered before considering. I read something it isn't and I'm sure it's not cheap!
How many people here had this test covered by their medical plan?
I just don't even know where to start on it honestly when it comes to determining the proper testing for mold. I have a C3a in normal range and C4a of 12,000+. Another indicator of mold poisoning based on my readings. I have horrible response to Lyme treatment too so I'm even more suspicious.
[ 07-19-2011, 11:01 AM: Message edited by: seekhelp ]
Posted by Elaine G (Member # 20735) on :
BC/BS paid for all tests that you mentioned back in 2009 when I had them done.
Posted by willbeatthis (Member # 31111) on :
Seekhelp-- I did not have any of the special testing you are talking about run. I knew I was allergic to mold by going to an allergist and they did a prick test-- that had been years ago for me. I recently had to move out of my home for 3.5 months because my throat was nearly closing and I figured out I had a leak and then likely mold. The mold folks came and yes there was mold all through my ac which went into the ducts and thus all over my house. I don't think it has to be as complicated as you are reading... if you leave your home and you feel better... a lot of times, that is an indicator of sick building syndrome and mold generally plays a part... Now, I am NO expert, but I think if you tell someone you have water leaks and have someone in your area like a disaster company -reputable come check, then you would have your answer and you would be on your way to taking care of the root of the problem. The leaks have to be stopped, treated and sometimes if mold is in the sheetrock-that has to be replaced. My homeowners insurance did some of the mold remediation- thankfully and I am so grateful I took care of it as my doc thinks for sure it is why I have been sick for 2 plus years. If mold is in your house, I think you will have a hard time getting well with it there is you are allergic. Again, no expert here just been there... and wishing you wellness asap. Best-
Posted by TerryK (Member # 8552) on :
A mold allergy is different than the genetic issue that Dr. S. writes about.
In Dr. S's theory, the immune system does not make the antibodies necessary to get rid of mycotoxins. The testing also covers other biotoxins such as the borrelia toxins that lyme patients have, spider bite toxins and others.
I've had the HLA testing, MSH and leptin and they were all covered by insurance. Once you get the lab order you can call the insurance company and give them the codes from the lab sheet and they will tell you if it's covered. I don't remember which codes they are looking for but you can call and ask if you need to.
If you have the HLA issue for mycotoxins and/or borrelia just fixing the mold or treating the infection will not take care of the problem. You will need to mechanically bind the toxins to remove them from your system. If you don't, the theory is that you will never get well because the toxins are stored in the body and continue to disrupt hormones and wreak havoc. This is one reason why some people cannot tolerate lyme treatment. For those with this problem, killing borrelia creates toxins that cannot be effeciently excreted without help.
I have a presentation that is an overview of Dr. S.'s work. It used to be on the internet but I can't find it any longer. If you want the file PM me with you e-mail address. You can give it to your doctor.
Terry
Posted by momlyme (Member # 27775) on :
Elaine - Did you learn anything from the tests that helped you with your recovery?
Did you take the cholestyramine (CSM) to enhance toxin elimination rates as Dr. S recommends as step 1?
seekhelp - I tried to learn about mold through Dr. S's websites. There is just not enough free information by Dr. S. to learn off the Internet.
I bought the book, "Surviving Mold" and learned from that. It's around 800 pages. Well worth the $20. I bought one for my LLMD too.
Mold is too often overlooked. I feel it is a toxin people don't believe can cause very little harm and so they overlook its importance.
With the help of our electrically charged society, mold is growing at an unnaturally rapid rate. In the first 20 seconds of this video: http://www.youtube.com/watch?v=fw5j2YqdpC8 Dr. K describes an experiment growing mold in EMF... the 2 part series is enlightening. (20 minutes)
In the new book, (SM^) Dr. S talks about misdiagnosed, cancer, ms, and yes LD and how mold symptoms overlap many of the symptoms of other infections and toxicities.
He also lays out his treatment plan and exact order of treatment, how to test yourself and your home for mold and why you have to AVOID moldy buildings depending on genetic susceptibility.
My problem is finding a doctor who knows about mold. I contacted Dr. S's office a little over a week ago. I got an email stating I would be receiving a "new patient package" in the mail... still waiting for that.
I also sent a copy of the book to my son's LLMD. If she will learn this I won't have to travel to MD. I definitely think this is an issue and one of the reasons my whole family is sick to some degree.
Posted by TerryK (Member # 8552) on :
Tammy - I can't answer your PM because your mailbox is full.
Terry
Posted by seekhelp (Member # 15067) on :
FYI, I had a company come out who specializes in mold inspections and air testing - they DO NOT do remediation. The guy seemed very reputable to me.
They did a visual inspection and couldn't find a whole lot. They suspect the issue, if one exists, may be behind a specific wall in my basement (paneling).
They did two air tests: basement and bathroom. We skipped the outdoor test at this time. Total cost was $300 for inspection and two air tests. I'll have my results tomorrow hopefully.
Posted by Aimee (Member # 20946) on :
momlyme - I waited for 3 weeks for my packet after filling out the online request and it never came - I called a few days ago and they couldn't find my info, I gave it to them over the phone and had the packet the next day. Might be worth a call!
I am pursuing an appointment with him, but there is a TON of paperwork required and it's not cheap. But I think his treatment is worth looking into. I have improved on the CSM but have alot of the issues mentioned in the book and I haven't responded as well to Lyme treatment as many here have, so I'm holding out some hope that maybe biotoxin illness is at the root of some of my problem.
I have contacted my BC/BS insurance and given them the test, code and diagnosis code for each test he lists and am waiting to hear what our expected out of pocket will be for them. I can't be surprised with a huge lab bill. I did have the coag nasal staph test run at my last LLND appt. Waiting on those results too.
My LLND said she would sign off for the testing but his actual treatment plan doesn't seem to be all there in the website or the book. But he says he is willing to work with other physicians which I am hoping is true. It would save alot of $ in terms of actual appointment cost and travel.
I've also sent in the ERMI test through Mycometrics and am waiting the results of that. I'll be interested to hear what yours comes back with seek. We don't have any visible mold in our house either but I thought it best to at least either rule mold in or out. Damp weather always makes me feel worse too.
The surviving mold website has a good explanation about each of the lab tests. I found this to be helpful and printed it out to go along with the testing order sheet for my LLND.
Curious to know if anyone else has his specific treatment plan in writing that I can hand off to my LLND as well. Maybe I missed it in the book somewhere, it was LONG and I went back and re-read but still possible I missed it.
Posted by seekhelp (Member # 15067) on :
Well, let me tell you something. I just got the results of my mold testing back in my home......take it for what it's worth.
I had high TGF-B1, C4a>25,000, low MSH, low VIP, HLA markers not dreaded, but supposedly multi-suspectible to mold/borrelia - all signs of mold poisoning according to Dr. S.
Testing indicates no significant mold concentrations at all in my home via 2 air tests and visual inspection.
Perhaps some of what Dr. S says is BS and these tests can be elevated due to other infections/reasons. Hmmmmm...Eye opening. I think as Sparkle7 says, the picture is not as clear as these docs believe. It's hard to pinpoint anything.
I'm so sick of wasting cash on these illnesses. I could've gotten my young daughter so many nice things. Makes me want to vomit thinking about it. Unfortunately, I read right after my testing was performed about how the C3a/C4a test was inaccurate due to not having the correct test kit at LabCorp. Talk about bad timing. If my C4a was normal, I may never have bothered.
BUT I thought I read somewhere mycotoxins aren't as easily tested. I can't chase my tail anymore on every theory though.
My inspector who has a doctorate in his field and does microscope evals and much more (very smart guy) said the EMRI test is very suspect and doesn't recommend. He knew exactly what I was referring to.
The person who did my inspection has pretty serious credentials IMO:
Posted by seekhelp (Member # 15067) on :
So it leads me to wonder. Why do my eyes water 24/7. Pressure in head. Fatigue beyond belief many days. Yawn 300+ times daily often. Neck feels swollen and 50 other symptoms. If I tossed out my LabCorp Babesia WA-1 IgG test showing titers of 1:2048 and said Igenex's WB may be inaccurate/meaningless, I'd be right back to ground zero w/no idea what's my problem.
IF ART testing is legit and actually provided answers, wow would it be priceless for someone like me. Unfortunately, my spouse wouldn't buy into it anymore in a million years. She's done with me wasting cash on pipe dreams and 'hocus pocus.' Posted by Dogsandcats (Member # 28544) on :
My LLMD just ordered a bunch of mold tests thru labcorp. I think the vampire took eight vials of blood.
He is testing because I am not getting better on abx.
I don't have any of the symptoms you all do, I just can't get better.
Will post when I get the results.
Posted by karenl (Member # 17753) on :
"Testing indicates no significant mold concentrations at all in my home via 2 air tests and visual inspection."
Seek,
could you please give me the exact test results in a pm. 300 $ was ok.
Posted by seekhelp (Member # 15067) on :
Karen, better yet here:
Posted by seekhelp (Member # 15067) on :
Posted by seekhelp (Member # 15067) on :
/\ Any ideas from the mold pros out there like Karenl, MomLyme, etc.?
Posted by TerryK (Member # 8552) on :
seek - if you've been exposed to significant mycotoxins in the past and have never done anything to bind them, they could be causing health issues. Same for borrelia toxins. If you don't make the antibodies to get rid of them they supposedly stay in your body causing health issues until you bind them with something like cholestyramine or over the counter binders.
Terry
Posted by momlyme (Member # 27775) on :
seek - this report is difficult for me to read.
You have no stachybotrys- which is good
But the Aspergillus can be quite bad. Your report states "Pen/Asp group"... I can't even begin analyze this data.
Here is what I have on Aspergillus/Penicillium group:
Potential or Opportunistic Pathogens Possible depending on the species.
Potential Toxins Produced Possible depending on the species.
Also, the most deadly of the Apergillus are the plant molds... if you have house plants get them out.
Worst of the asperillus(top 3 are found in plants): Aspergillus flavus/oryzae Aspergillus fumigatus Aspergillus niger Aspergillus versicolor Aspergillus restrictus
These Aspergillus are all class A molds which can cause sickness in humans. I am wondering why this report does not break Aspergillus down further.
You do have fairly high counts in this category. Looks like 88.96% of your air is made up of Pen/Asp. I would be concerned and look into more testing... possibly leaving for a week-10 days to see if you feel better.
This inspector said there was nothing to be concerned about?
Posted by seekhelp (Member # 15067) on :
Thanks Terry. I have never done anything to bind Mycotoxins because no doctor believes it's an issue for me.
Momlyme, I agree it would have been nice to know what kind of Aspergillus mold it was, but the report didn't break out. I grew ENORMOUS amounts of vegetable plants in my basement every year (400-500+) from Jan-May for the last 5 years. It's a big hobby for me.
Correct that my inspector felt I had no significant levels of mold in the home that would cause me any health issues.
I have never been out of this home for more than 3 days since 2004. My wife burns through her vacation days taking me to docs.
All I know is my head feels SO foggy. I used to be very smart, clear head, etc. Now I feel like I'm in a haze 24/7. Head squeezing. Eyes don't stop watering. If I lie down on my small and only rug in the home (5' x 8' area rug) within 5 minutes my nose is completely stuffed up to the point I can't breathe and my eyes drain water like Niagra Falls.
When I get into my car even as a passenger, the out of world fatigue and eye draining begins too.
Since the inspector said results are OK, my wife will now say all my crazy forum people think everything is bad. He eyes never water. She's totally fine here.
I wouldn't even know a next step here. If things continue as is, I'm afraid I won't have a brain soon. Posted by seekhelp (Member # 15067) on :
I thought this may prove useful. Here's a few questions I posed to my inspector and his response(s):
Below see my recent e-mail correspondence with my inspector and his responses:
Q- Is it safe to assume if the weather was not so dry the last couple of weeks that the results may be similar in the basement and other areas?
A. If the weather were not so dry I would expect a difference in the types and amounts of mold; some molds tend to release more spores during moist conditions, e.g. basidiospores and Pen/Asp. On the other hand, some of the allergenic molds like Cladosporium release more spores during dry conditions. As for differences among rooms, that would again vary with the moisture and temperature of each location.
Q. Have you ever seen dramatic pick-up of mold spores in these conditions when testing revealed totally normal levels in 'ideal' weather?
A. I have not re-tested the same property on dry vs. wet days, but, I know that the outdoor types will change substantially with the outdoor weather. The indoor types will not likely vary as much if the conditions have been stable, i.e. if the humidity inside was maintained the same on both days, the mold profile should be the same. If, for example, you run the air conditioning unit on both days, the indoor levels and types of mold should be similar. If, however, the AC is not running and the humidity indoors is much higher, I might expect a difference.
Some molds actually release more spores in the dry conditions, especially some of the allergenic types like Cladosporium. Other molds release spores under more moist conditions. After wet conditions, ascospores and basidiospore levels rise dramatically. Thus, higher humidity/more moist conditions can affect the types and amounts of mold.
I think what you may be driving at is, if we re-tested the house when the AC was off and the humidity was much higher, would we find a difference in the types and amounts of mold from the first set of tests? I would expect some differences if the AC was off for a few hours, but how much of a difference is hard to say.
Q. While not high concentrations, what do you make of nearly the total mold spore concentration/composition in the basement being penicillum/asp type (one with health risks)? Is this normal? The bathroom seemed much different in that several different forms existed.
A. Basements usually have more Pen/Asp than other areas. They seem to do well in basements since they normally have more moisture than other areas, being underground and surrounded by moist exterior conditions. The bathroom molds in this case are mainly outdoor types (smuts, Cladosporium, ascospores, basidiospores).
Q. When you were here, I was asking about the central air / HVAC system. Is it safe to assume if the two tests you did were not alarming that there is little to no chance mold spores are coming through my venting system in any significant concentrations?
A. Yes; these results suggest there is not a significant amount of mold in the house.
Posted by seekhelp (Member # 15067) on :
I also wonder if I tested the right rooms. Perhaps I should've done the bedroom I sleep in and / or family room we spend a lot of time in. The inspector suggested the basement/main bathroom.
Posted by SeaSickTick (Member # 32919) on :
Just read your report, your mold levels are normal. I'm just going to make one comment on why I said people need to be educated before posting false information
Momlyme says, "You do have fairly high counts in this category. Looks like 88.96% of your air is made up of Pen/Asp. I would be concerned and look into more testing... possibly leaving for a week-10 days to see if you feel better. "
88.96% does not mean that 88.96% of your air is mold. it means that 88.96% of the mold spores found in your air are pen/asp.
If 88.96% of your air was mold, you would have visible air and you would not be able to breath.
Please see an expert for mold advise!!!!!
Posted by seekhelp (Member # 15067) on :
SeaSickTick, I certainly understand if 89% of my air was mold, I'd be dead.
She was saying of all the mold spores existent in the sample taken, this PARTICULAR type of mold represented 89% of ALL MOLDS (not air) detected. The question I believe comes down to if it's normal to have this type of mold mostly where it was found and then next was the quantity of spores of that one of any concern.
I have no idea if one person can be hypersensitive to a particular species of mold while another can handle 20x as much w/o an issue.
Inspectors will look at aggregate populations as one-off suggestions could get them in trouble. The fact is most aren't ill and would struggle to comprehend how we feel day to day. Now whether mold plays a part or 100 other issues in feeling poorly, your guess is good as any. It's an endless dog chasing tail game that I'm damn sick of playing. Posted by karenl (Member # 17753) on :
Seek,
the test says: aspergillus penicillum,
It is cancer causing for everybody also for people who are not sensitive like your wife.
You need to test your bedroom, exactly where your nose is. Also you need a Hepa machine in your bedroom and get all things out. Read Dr. Ziem. Old bedding is moldy?
You are very sick. First the mold has to go.
Posted by momlyme (Member # 27775) on :
Seek - it makes since that you have high levels of aspergillus in your basement because you do so much gardening down there. Three of the aspergillus strands love to live in gardening soil.
Karenl - aspergillus and penicillum are two different molds.
Seasick - I realize that that is a measure of the mold in the air and that seek does not have to cut his air with a knife. Thank you for pointing out my error in wording.
There is another thread going called "Educate yourself on fungal infections..." where abhistbuff posts:
"It is a case of aspergillus that caused an intestinal infection. The IV medication is called amphotericin. It has genetically mutated ..."
Also, the book, "Are You Moldy" by Lori Tondini is available on her website http://areyoumoldy.com (the e-book is only $5) and she suffers from mold illness caused by Aspergillus... among others.
Again, there are bad and not so bad strains of aspergillus.
Seek- if you spend a lot of time in the basement then you may want to do some more testing... or skip the testing and do some cleaning.
We are currently cleaning our basement to hospital clean... patching any cracks in the foundation and painting with Dryloc on both sides of the foundation. It may seem extreme... but we were all very sick.
We also have installed a 70 pt. dehumidifier in the basement (Frigidaire)- got it from amazon.
Posted by jkmom (Member # 14004) on :
I was wondering if there was something in my house that was contributing to my daughter's problems. We decided to move to an apartment for a month to see what happened.
For her, it didn't seem to matter. Of course, I am left with the thought that maybe that apartment also had mold or other issues. Still, it seems unlikely that they would both have the same problems, so we are not pursuing that any more.
Any chance you could go stay in a hotel or vacation rental some place for a week or more and see what happens? Maybe your wife and daughter could find something to enjoy for this "test".
Posted by momlyme (Member # 27775) on :
The problem with this test is most people will want to bring luggage, clothes & stuff from your old environment.
This immediately cross contaminates the new living space and brings the mold spores with you...
The only way to test this for sure is to do what we did. We brought our clothes in plastic bags to the laundromat. We washed our clothes with a cup of ammonia per load. We re-bagged our clothes in new bags and went to our motel room.
We brought nothing that could have mold spores on it. No luggage, no bags, no shoes... if it was not clean it stayed outside until it got cleaned.
If our room gets contaminated we hepa vacuum, clean, hepa vacuum clean.
I know when the room is not right. I am like a bloodhound for mold now that I am detoxing it. I usually I can find something that is causing me to get sick. Even a baseball cap did it to me once.
We have lots of Ziploc bags and Tupperware containers for stuff we have to have but can't breathe around.
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