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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.
I was exposed for about 2 yrs before we found that inside our entire west exterior wall was covered in toxic black mold with 3 of the most toxic molds . Symptoms: began with my head feeling on fire some of the time which progressed to most all the time very red face and feeling very hot and head on fire . Skin rashes on arms, face, neck , chest, and these still come and go. Sores on face and arms, systic acne and cysts on back, arms , and random other parts of my body, hypertension , eyes burn and itch, trouble swallowing and developed choking problem. I now have beginning stages of asthma and I use an inhaler daily. Very low energy probably chronic fatigue. Aches and new random pain throughout body with headaches. My body is producing too much histamine now so that causes stomach problems . Nausea pretty much daily . As the months went by without knowing we had mold I continue to get worse . I feel like I have the flu all the time . I have sore throat most all the time also . I have flare ups or episodes where I have to stop and My brain is on fire and feel very bad and then it passes after 5-10 mins. 15 Drs could not figure me out . I had so many tests and lab work done and they told me to go to Mayo Clinic . After we found the mold we moved in 3 days . I contacted the Drs I had seen and most of them would not see me because they said they could not help me . I found a very good doctor in Dallas who specializes in Mold cases and he has helped me some . Toxic mold poisoning is real and it can cause: your organs to shut down, cancer, finished cognitive ability ( brain fog ), and it ravaged my immune system . Now any health issue is 10 times worse . Any allergy I had before is much worse . I take about 17 different kind of meds everyday. I definitely have brain fog, and people will think you are crazy but ignore them . I also met a great Dermologist who herself had mold poisoning and it took her 2 yrs to get back to work and she really has helped me get on the right path. There is no cure . It can kill. My doctor in Dallas did a Urine test and blood test and they found mycotoxins in my blood and urine . Which is bad so now I have to try to get my body to eliminate these out of my body. I will post more at a later time . Please take mold very serious, it can kill but at the least make a persons life miserable .
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Hi my dad has been experiencing the same kind of headaches with feelings of his head being on fire. This has been going on for about a month. He informed me that he has passed out 3 times in his living room, bathroom and kitchen. He lives alone and is currently having a carotid Doppler and brain scan. My sister has taken him to live with her until we figure out what is wrong. Living at her house this past week, he has not had any symptoms. So last night he said maybe it’s my apartment. He lives on the 4th floor of a building and has ceilings in the 2 bedrooms and living that have water damage from the roof. The landlord has done nothing about it and always tells him the roof has been repaired. He still has the water damage. I know mold grows in damp areas. I said maybe it is a mold issue that is causing the health problems. He has also lost sight in one of his eyes and complained of his muscles aching all of a sudden. Can you please advise me how to get my dad the medical help he needs. He is 83 years old and has been in the best health until all these symptoms started. And I know he has not told me everything because he never complains about anything and doesn’t want to worry me so who knows what else is wrong. Thank you so much and hopefully I’ll hear back from you soon
Good morning @dmk1227 and welcome to MayoClinicConnect, We’re all volunteers who share information and resources from our own experiences with health problems. I’m glad you’ve found us.
This certainly sounds like a serious time for your father. I’m so glad he was able to go to your sister's home while things are figured out. I’m hoping that @jenniferhunter will join our conversation as she can give you more information.
Can you tell us what any doctors so far have said?
Is it possible to have mold toxicity but not experience any respiratory issues? I have horrible brain fog, sinus headaches, depression, extremely high histamine levels which causes food allergies, and a rash on my face. Could this be from mold? I live in an incredibly old apartment building.
Good morning @lboro07 . I’m so sorry, I just saw your post asking about possible mold toxicity. Sounds like you’re suffering from lots of things. Have you seen a doctor yet? I’ll ask @jenniferhunter to join us with some of her good information. We would love to help, if we can
If you don’t mind telling us, how did you hear about MayoCinicConnect?
He just got the results of his carotid Doppler and CT scan of his head. The Dr called my sister back with the results. All normal. I’m am in a rehabilitation center recovering from surgery to repair my tibia fracture. So i told my sister about what I’ve been doing research on about mold toxicity and to tell the Doctor my concerns about it being caused by mold. The doctor replied no he would only be having respiratory problems and said you don’t pass out from mold poisoning. So I asked her what’s next? She said the doctor just told us the results. He didn’t mention anything about what’s next. His labs last week showed his WBC to be elevated also and is RBC low so now he has to see a hematologist and Opthamologist because of his eye going black. That’s it. I want to call this doctor and blast him out. What’s your take on this?
@dmk1227 Good for you for being an advocate for your dad. His doctor doesn't know enough about mold toxicity, so it's best to find a functional medicine doctor or environmental allergist to help. Clearly, he should move out of this apartment. I suggest contacting his county health department in case there are regulations about mold remediation in rental properties, and yes if there is water damage that's visible, there will also be mold that has grown there. I would think this health risk would allow him to break a lease more easily. I know you're a bit upset with the doctor, but don't spoil a good relationship with him/her, just find another specialist. The doctor is familiar with your dad's health and he may need those services to continue unless you plan on finding a new primary care for him.
Mold toxicity causes a lot more symptoms that just respiratory. One of the practices that was a pioneer in the field of environmental medicine is the Environmental Health Center in Dallas and they do treat mold toxicity. Here is their page on mold toxicity with lots of information and the AAEM website where there is a provider search. You have answered the question since his symptoms disappeared when he left the apartment and that may be enough to just get away from it. I'm glad you came here and that I was asked to help. I have been a patient in environmental medicine for years and learned a lot from my doctor.
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
Severe mold toxicity is a genetic defect. Approximately 25% of the population have the gene. I would know, I have it as well. You can’t sue someone for your genetics. And I totally understand, you want someone to be responsible for your illness, but sometimes it just is what it is. Good luck.
@kburn2201 Welcome to Mayo Clinic Connect, a place to give and get support.
I wasn't aware of a gene specific to mold toxicity. Do you have any articles or information you could share with the group about it?
Happy to have you here. May I ask you what brings you?
Hi @glenbI I think I found this thru Devine Intervention! I've been sick for a very long time. I just found part of recent concerning issues are due to mold discovery! I've not been to the Dr yet but I'm headed there soon. I'm glad I have a direction to start. Luckily my doc is an old-school, extremely thorough kind of guy. I noticed you mentioned narcolepsy above. I was diagnosed over 10 years ago with severe narcolepsy. I didn't think that had to do with now tho. I have a mild TBI from a car accident and also chronic pain issues. I'm trying to think of timeline when these started and I believe it was before I lived in this home (current mold issue here.) Are you of the belief that the mold caused narcolepsy as well?
I must tell you I'm not substituting for medical advice but I have a bit of hope that things may have an answer finally. Thanks for sharing you're story!
Yes, every bit of that can be caused by toxic mold. I personally did not have any respiratory issues either. My first symptom was nausea, followed by fatigue, lots of neurological symptoms such as inability to concentrate, loss of balance and coordination, inability to retain new information, and more. I ended up being diagnosed with MCS, POTS, and CIRS.
About 25% of the population has the HLA-DR gene that makes us more susceptible to toxic mold poisoning. Some people can leave a moldy environment and get better on their own. Others, like me with the HLA-DR gene, have to work harder to open up our natural detox pathways and take binders to carry out the mycotoxins. I couldn't sweat when I left mold. Thanks to regular sauna use I am sweating and getting the toxins out. I also take liver support and do things like dry brushing and rebounding to keep my lymph moving. It's a lifestyle at this point. But it's all working and I am so close to being completely healthy again.
I know this isn't the topic of what you're writing about, but what are you taking for your narcolepsy?
I have toxic mold poisoning for 2-3 yrs . Inside one of our outside walls was full of toxic mold and we were unaware of it . We had 3 of the most toxic molds there is and the mold experts tested air quality outside it was 300ppm and inside 18,000 it was airborne and very bad . We moved in 3 days . Since I have lived through this hell and I have learned A lot about this . Bleach alone will not eliminate toxic black mold. Yes it will turn white and appear to go away but the bleach will not eliminate the spores. The spores will attach to all of your belongings . We had to throw away 95% of our belongings. If you don’t do this when you move you will take the mold with you . I had been to about 15 Drs when I was sick for the first 18 months and we had not discovered the mold yet, and they could not figure my case out . I had done so many tests and lab work and procedures done it was crazy. Then after we found the mold I have 3 more doctors and they are trying to help me . People will think you are crazy when you have this . There really is no cure but there are some actions you can take to help you contact me anytime by Text or email and I will be glad to share my experience .i want nothing out of it I just hope to help anyone I can because this is a horrible experience .
Can you tell me more about your symptoms? I have a fairly small amount of mold in my house, and have two autoimmune diseases.
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