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Was doing some research on Symptoms of Lyme Disease the other night and ran into similar symptoms of Mold Toxcity. Does anyone know anything about it?
Interested in more discussions like this? Go to the Autoimmune Diseases group.
Hello this is Glenb and I have been going through a horrible experience with mold for over 3 years. I moved into a house and within a few months I began having all kinds of crazy symptoms: headaches, rash, hypertension, fatigue, joint pain , trouble swallowing and choking, and many more and this progressively got worse and to the point where I felt on fire most of the time. My head felt like it was on fire. I went to 15 doctors and they kept referring me to more specialists and finally they were about to send me to Mayo Clinic or Cleveland Clinic.i had a family doctor, cardiologist, oncologist, pulmonologist, Dermologist, kidney, ENT, so many I cannot remember all and I am on the road right now . My IGE level was elevated to 12 times the normal, my BP got as high as 223/118 , I went to the ER several times . I was hopitalized for a week because they thought I had a heart issue . I had dozens of lab tests, sonogram, chest X-ray, cat scan, MRI, bone marrow procedure where they took sample it out of My spine ( not a good experience ) because they thought I had an auto immune: mast cell disease which is not good, colonoscopy, endoscopy, enhanced swallow text , and many more. The more my Friends and relatives thought I was crazy, the more symptoms I would get and the others had gotten worse to the point where I felt like my Brain was on fire and I was starting to question my own sanity.
Then we found the mold. It was very bad. It had been growing for what appears to be years between the exterior wall and the inside wall .
Mold inspectors came out and found 3 of the most toxic molds there is and they did air quality test and it was 300ppm outside and 18000 ppm inside . It was very bad . It was in the AC/heat system also. Well not very many doctors know anything about mold and the health insurance industry tried to sweep in under the rug so to speak, because there are millions of potential cases and law suits were beginning to emerge . This is why you see major medical institutions making statements about how there is no proof about toxic mold causing specific medical problems . You can even go back to older articles and Mayo even had mad similar claims; but it is slowly changing. In the last 18 months or so I am seeing more info and major
Medical institutions stating that it can cause organs to shut down, cancer, lung damage leading to death, diminished cognitive ability ( brain fog ) , and ravages immune system.
Well I guess I am a bit lucky because so far not much lung damage and no cancer yet, but I have all of the rest . There no cure. There are some treatments to help your body eliminate the mycotoxins, which is a must or like several “ doctors “ have told me if I do nothing it will eventually kill me . I am 67 ( high risk group ) sand Medicare will not lay for the blood test . I haven’t tried to appeal this and it probably will probably pay eventually . The urine test is the least expensive and they will pay for that and according to the specialist I go to now if you have mycotoxins in your urine they are in your blood . They also did a nasal swab , not sure what they call it but it was not fun and I had fungi and bacteria from the mold there. My body is producing way too much histamine now which causes so many problems . Any allergy I had before they seem like they are 10 times worse now . I forgot to mention : I have adult asthma now so I carry an inhaler 24/7 and have to use it frequently. I live in DFW Texas and it was difficult to find a doctor to help me . I had UTSW set up an appointment with a immunologist ( took 3 months ) and his office called and cancelled 2 days prior and doctor said he does not treat mold . It is crazy . This is a real issue and there are probably thousands of people that are having a variety of symptoms and don’t even realize they have been exposed and doctors have misdiagnosed and labeling it auto immune ( which they don’t know that much about ID either ) it is shameful what the health insurance big bucks has covered up . I got lucky and was referred to a Dermologist that actually spent 2 year off of work dealing with personal mold poisoning and she has helped me with much info . She told me that 75% of people metabolize the mycotoxins and eliminate these naturally but 25% of people don’t , I am in that lucky group. Check the laws in your state and there may be something about mold and landlord tenant statutes where they have to refund you and you move . I would get out of ASAP. The longer you stay the more damage to your health. Contact me and I will be glad to give you all the info I have . I don’t want any money or anything out of this . I want this information to get out to as many people as possible . I hired a lawyer and going after the people on the house legally because we have proof they were aware of it . Take care . Good luck . Glen B
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@glenb I found this article which may be of some help. It has a section for finding a physician, also. I know that now may be a crazy time, but have you thought about contacting the CDC (centers for disease control)?
https://www.survivingmold.com/diagnosis . I wish you the best
John, Thanks, Seems Like I'm back to square One in my hunt to a cause as to what is wrong with me and many others! I thought it may be an avenue to persue but it dosen't look that way. Will continue the hunt! Have a Merry!
I just remembered some old journal article about mold that mentioned studies in factories. I went to OSHA and found this. I think some of the oldest studies on mold exposure rose out of unhealthy work places. Osha has links, full of links on it.
Oops,, as a new member, Mayo won't let me post links – it won't let me post the link to the osha page. So let me do it this way. Osha (dot) gov (forward slash) mold. You can also find the page by googling two words: OSHA mold
@chm and @sundance6, OSHA has a lot of information on mold toxicity. Here is a search of the OSHA site with links to the different documents available.
@chm This May be the website for OSHA that you were trying to post
@glenb Wow, this mold in your system sounds just awful! I am so sorry. Is anyone else infected or do you live alone? And I can’t see how you are supposed to ‘stay at home’ during this pandemic. Is it possible for you to move out while you investigate what to do?
We moved a week after we found the mold .
It was killing me . Still sick it takes awhile to get out of your system if ever . I have read 100’s if studies and watch about the same amount of videos and going through it personally it is a real problem in our country and it is hurting many people and especially those that are unaware of their exposure . I just try to help anyone I can by giving them al the info I know , and I do not claim to be a expert that is for sure
. Take care
What kind of urine and blood test can be done to find the mycotoxins. As I believe I have mold toxicity. Been to many doctors all to be told nothing they can do. Can the mayo clinic do these kinds of test. I live in Arizona but would definitely like your doctors number see if he knows someone here in Arizona or if maybe I could come there… I'm about to have a lumbar puncture to see if I have mold induced meningitis… looking forward to hearing back
I haven’t heard of anyone getting mold induced meningitis so that is interesting and serious .
Well as far as I know the FDA still has not approved the urine test but my Medicare did pay for it but they would not pay for
The blood test which I plan on appealing . But the specialist told me that if it shows in urine it is in the blood . Dr Alfred Johnson (972) 479-0400 is the one that did my testing . In DFW area Texas
In over 50 years of living, I have never given much thought to mold. I've never lived in a building with a mold problem. I have never had allergies. I have never owned a dehumidifier or air purifier or even looked into owning one. All of that recently changed.
I recently rented a small house with a mold problem. The first time I toured it, it smelled a little musty but chalked it up to the windows being closed for a long time – i had been unoccupied for at least a couple of months. For the last three days before I moved in, it had been raining. When I arrived there was a strong mold smell. I opened all the windows. That night,, the smell of mold was intense and intolerable. I actually wore a scarf around my mouth and nose to breathe through in order to sleep. The mold is giving me headaches.
It is most intense in one room but not so that it seems localized, as it is strong throughout the length and breadth of the house. There is no visible mold in the interior living spaces. I suspect it is extensive either in the basement crawl spaces or behind the walls and attic crawl spaces. The building has a metal shell, and so I researched condensation. Whether it was basement or behind the walls or between the roof and ceiling, it was a major, extensive and had to have been ongoing for a long time. It odor was strong enough to sort of knock you out. My mold remediation research began the next morning, as soon as I woke and has consumed hours and hours and hours of my time.
The landlord sent a mold specialist who completely dismissed the notion that condensation related tot he metal shell could be the issue, pointing out that the problem always rises from below, and so he focused on the basement crawl space, which has a dirt floor. He said it needed to be remediated there, that because of the dirt floor, it needed a moisture barrier installed and then a dehumidifier installed to run pretty much all the time.
There may also be a leak in a water drainage pipe or water pipe under the floors/in the basement.
At first I thought I could make a go of it by addressing the air in the living space with a dehumidifier and an air purifier but unless the landlords do remediation in the basement, I am not so sure.
Maybe I have just been lucky, but I have never lived in a place where you can't leave a wet wash cloth on the bathroom counter for two days. I did an experiment here – I wet a thick piece of cotton jersey, wrung it out, folded it once, and left it on the bathroom counter. 48 hours later there were 8 round black mold spots on it at least a 1/4 inch wide each. I was horrified. Those spores are everywhere in the air inside and I am breathing them. I read that there is NO treatment for inhaling large quantities of mold spores and that they can get stuck in your lungs..
Luckily this is a rental and I am thinking I should just leave.
I think because of the difficulty of nailing down the science of mold exposure it gives rise to two things: 1) pseudoscience and quackery; 2) wrongly declaring there are no serious health effects caused by mold
But the fact is, from my research anyway, we have long known that moldy environments are not healthy for us and there is plenty of science on toxic sorts of spores as well. People with mold symptoms shouldn't be made to feel like they are crazy. As for me, I am looking to move. My gut is telling me that no air purifier and dehumidifier in the world (That I can afford anyway) s going to solve this for me if the landlords aren't going to remediate it at the source. I am having headaches from it on a daily basis – this is constant now. Sometimes very mild headaches but it is there, wearing my down. Moldy environments are not healthy to live in
I posted a reply but you are welcome private message me. I am not selling anything just a victim of mold poisoning and I want to share the information I have learned over the past 3 years of suffering . Good luck GlenB
@glenb, You'll notice that I removed your private contact information. Mayo Clinic Connect is a public forum. We recommend using the secure private message functionality to exchange contact information.
I consulted with someone about whether I could maintain the air quality in the living space with high quality hepa air purifiers and dehumidifiers if the landlord chooses not to remediate the mold at the source. In other words, if the mold continued to grow under the floor/basement, spewing spores into the living space, whether I could essentially eliminate enough of them to create healthy indoor air quality.
He said he could not say for sure. He had no answer to that. The mold specialist submitted a report to the landlords and said that the remediation needed was not all that expensive and consisted of laying a moisture barrier sheet over the dirt basement floor and installing a dehumidifier in the basement (there may also be some leaky pipe but he did not see standing water. He also did not really enter all the way – it is a crawl space rather than a full-height basement. The furnace is down there.) So, after they received this report and contacted me, they mentioned nothing about this, only that I can take the cost of air purifiers and dehumidifier out of my rent for the living space. Nothing about remediating the basement or the source of the mold growth.
Making matters worse, of course, is the fact that I am working from home due to Covid/social distancing requirements. I hardly go anywhere but when I do, I smell like mold! I had to go to the grocery today and when I was in the car I smelled my hair – I have long hair – and it smelled strongly of mold.. That's pretty bad. It's strong enough that I basically smell like mold.
I just moved in. I have lived here less than a month and often have a low grade headache from it. My eyes got itchy but that is better now. But my breathing is tighter, like there is pressure on my breast bone.
I have sprayed mold killer on everything, even though the mold growth is actually not in the visible living space. I have aired out the house a lot. I have run fans out the window in the worst room. All of that helps but I am wondering if I should even try to make this place livable. I dread moving, but I think I have to face up.. They do not plan to remediate it, even though it is not that expensive in this case, I am told.
What do you think? Bail or try the hepa air purifiers?
Well i was exposed for almost 2 years. I got sick within a month and it progressively got worse . We moved within a week of finding the mold. When you spray bleach on mold the black color disappears and people believe it is gone but the spores are not gone and the longer you are exposed the more likely for it to get in your lungs and that is what normally people die from. We were told by specialist we have to dispose of all of our belongings. We did about 90% and then we cleaned the rest. 3 steps : clean with Bleach let it dry , then clean with vinegar let it dry , then clean with ammonia mixed with water 5-1 mixture. What we kept were picture frames and books and memorabilia of our family and our children. We kept a few clothes. People are landlords for knowing there is mold and doing nothing about it . We are suing now. I am 67 and never been sick, have injuries but no illness. I have been sick non stop for over 3 years. It has been horrible. In Texas licensed mold inspectors cannot do remediation. They test the mold and identify the type and then text air quality. It cost us about 1400. But we’ll worth it . It sounds like it is airborne and probably in the AC/heat system and that makes it even more dangerous . We hated moving but we knew it was bad and it can kill . If it was me I would move and if not at least get the mold tested and see what type is there. Your landlord does not seem to care much about your situation, but most people are not aware of the danger. I will research your state and mold tonight and if I see anything important I will contact you . We had 3 of the most toxic molds there is . I learned through my sickness that it is so difficult to find correct information and I am on this forum to pass on what I learned over the past 3 years . I do not want anything out of this but to offer free the information I have learned. I do feel confident to say that if you have toxic mold that bad based on your description, you can develop more and more symptoms and it can cause permanent damage to you and anyone else that lives there . Text me anytime 940.329.0977 or call and if I cannot answer leave me a vm. Take care and good luck .
Hi @sundance6, About the only thing I know about mold toxicity is that is bad for your health. I found some information that may be helpful.
Mayo Clinic – Mold allergy – Symptoms & causes
Mold 101: Effects on Human Health
Do you think you might be affected by mold toxicity?
I was exposed to toxic mold (aspergillius, penicillium and cladiospores) in the my office that leaked for years and years. The toxic mold doctor I go to did testing and I tested positive for all of the molds for antibodies (bloodwork), toxicity (urine), and allergies (prick test). My toxic mold doctor is treating me and detoxing. I also see a lymphatic drainage therapist. I have severe shortness of breath every single day. It started when I was exposed. I had acute bronchitis for 7months plus and that's when the shortness of breath started. My lung doctor says there is nothing wrong with me and that because I've been away from the mold for a year, it is not the mold. She did a blood allergy and antibody test for aspergillius and it was negative. But all of my test at the mold doctor are positive. I have not been able to work in over a year. I am going to find another doctor. Have you ever heard of this issue? I am worried that my lung dr is dismissing the mold exposure and I could have something serious that is not being treated. She keeps telling me she knows nothing of the mold toxicity. Any advice? I suffer from severe persistent asthma everyday. Thanks!
Hello @longcreek170, Welcome to Mayo Clinic Connect. Sorry to hear about your struggles to find an answer. I do think you are taking a good approach to get a diagnosis and treatment by seeking a second opinion with another doctor. There is another discussion on Connect that you may want to read and learn what other members with similar symptoms have shared.
MAI bronchiactasis: https://connect.mayoclinic.org/discussion/mai-bronchiactasis/
Have you thought about seeking a second opinion at a major teaching hospital or the Mayo Clinic? If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.
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