I need support group for mold/fungus toxicity?

[MamaOnAMission]

I need to investigate mold/fungus issues with my girl. This was the first thing I looked into when I knew something was really hurting her, but I think I need to check it out from a different angle. Any advice? I need to talk to others with same issues to get more insight. Thanks!

[Familyof5]

I've got a lot of experience with mold. How can I help?

[MamaOnAMission]

I tried every other path to try to get her better, now am revisiting the idea of mold/fungus being the problem. I had the MOAT test done and she tested high for mold and fungus. I am thinking that a fungus can make a kid very psychotic, since mushrooms have the same effect when smoked, right? Did you test possitive for mold and what test did you do to find out??? Also, did the fungus and mold cause severe insomnia??? Thanks, Lilly

[tpotter]

I tried every other path to try to get her better, now am revisiting the idea of mold/fungus being the problem. I had the MOAT test done and she tested high for mold and fungus. I am thinking that a fungus can make a kid very psychotic, since mushrooms have the same effect when smoked, right? Did you test possitive for mold and what test did you do to find out??? Also, did the fungus and mold cause severe insomnia??? Thanks, Lilly

 

 

We also have experience, having had mold "accidentally" released into the house by a company that was supposed to be remediating properly. My son tested positive for hypersensitivity pneumononitis to mold, and the doc said that meant that we had to avoid mold. I have been having terribly symptoms, although tested negative. Never did the MOAT TEST. Our LLMD put us on cholestyramine, which binds the mold and pulls it out of the body. My son couldn't handle it as long as I did, but I think it did help me. He also sees an ART provider, who did muscle testing as well, and she has put him on several protocols for mold, as well as lots of other things she found. He's really improving, but keep in mind that we are dealing with a lot more than just mold.

 

Just curious why you suspect mold? Did you find it in your house? If so, have you completely remediated (that can include getting rid of all furniture that is made with pourous material. We have replaced all mattresses, except my husband's and mine (I didn't think it was as badly affected, but now I'm positive it's causing my hand to get swollen and numb at night, because I slept on my son's bed last night (he's away at college), and it didn't happen. I also still have to get rid of all my antique furniture, and in the meantime, just haven't been using it (I'm having such a hard time parting with it...it was my grandparent's furniture.) But, I know it's necessary, because you can't get that out.

 

You can also get more information on this subject from the lyme forum, as people there have discussed it in the past.

[MamaOnAMission]

Mold was the first thing I thought was her trouble when we first started this. I threw out almost EVERYTHING in my house. Spent thousands on new wool mattress pads and bedding. Tossed all carpets etc...Had all kinds of experts in etc.... Put her on cave man diet, but she still raced and bounced off the walls. Looked pale with red bags under her eyes. Her racing thoughts were scary. Could not stop her brain. Horrible. What I did was not helping. Up all night. EVERY NIGHT!!! Having her in tons of activities did not make her tired. I went to live with different relatives and went to less humid climates and slept in car with her to get her away from mold. Went to 3 allergists etc...Nothing helped. I am looking into it again, because S.Smith did a urine MOAT test that said she was high in fungus and mold. Not sure if it is a different type of mold situation then what I was researching in the past. Didn't ask...I just tried the medicine he gave me and it made her worse, but at the time she was also on Prozac that was making her violent. So I am going to revisit this. I keep thinking of how some mushrooms can make people hallucinate and perhaps thats whats happening to her. She just never stops running and hallucinating. She sees imaginary friends, never in the real world, but at times she begs for me to help her stop the thoughts. I need to learn more about this mold and fungus thing.

[lfran]

Lilly --

 

A lot of us have been taking the $99 23andme genetics test, which you can get without a doctor's prescription. It is a spit test, so non-invasive. It takes about 6 weeks to get results back, and you can order it from 23andme.com.

 

Since it seems like you have tried everything, this may possibly shed some light on some underlying conditions. It might be worth a try, although you should read up on it first, since it just offers information such as: with this genetic variation, you are more likely to develop X or Y or Z or less likely to develop X or Y or Z.

 

Also, if you haven't already done so, have you tested for KPU and MTHFR? The first is a urine test, and the second is a blood test, although 23andme will also test for MTHFR so you can get the info that way (but it takes a lot longer). Both are pretty easily addressed with targeted supplements.

 

What do your daughters doctors say?

 

Mold was the first thing I thought was her trouble when we first started this. I threw out almost EVERYTHING in my house. Spent thousands on new wool mattress pads and bedding. Tossed all carpets etc...Had all kinds of experts in etc.... Put her on cave man diet, but she still raced and bounced off the walls. Looked pale with red bags under her eyes. Her racing thoughts were scary. Could not stop her brain. Horrible. What I did was not helping. Up all night. EVERY NIGHT!!! Having her in tons of activities did not make her tired. I went to live with different relatives and went to less humid climates and slept in car with her to get her away from mold. Went to 3 allergists etc...Nothing helped. I am looking into it again, because S.Smith did a urine MOAT test that said she was high in fungus and mold. Not sure if it is a different type of mold situation then what I was researching in the past. Didn't ask...I just tried the medicine he gave me and it made her worse, but at the time she was also on Prozac that was making her violent. So I am going to revisit this. I keep thinking of how some mushrooms can make people hallucinate and perhaps thats whats happening to her. She just never stops running and hallucinating. She sees imaginary friends, never in the real world, but at times she begs for me to help her stop the thoughts. I need to learn more about this mold and fungus thing.

[MamaOnAMission]

I did the spit test and it came back fine. Our doctors just keep saying she's a tough case. They are trying hard. We were advised to do genetic testing next. The KPU was fine, but we found C6772T MTHR mutation identified. Doctors did not mention anything about it when it was on results, so I did not think there was a problem. Since then...I called naturopath and she said it would not be causing all of my child's trouble. I was told recently that this "mycoplasma phnuenonaei" could be a problem. Going to Dr. B. Thursday to discuss everything and to try to IVIG covered.

[lfran]

Which spit test did you do? The 23andme spit test shows 100s of genes -- no one is "fine" on all of them!

 

And, most importantly, what did your C677T results say exactly? Please look them up and post the results for the C677T and the A1298T if you have them both. Several of us have seen great benefit from addressing a C677T mutation. Not very many doctors know a lot about it, but addressing this has been very very helpful to my family and to at least a couple of other people on this board.

 

I did the spit test and it came back fine. Our doctors just keep saying she's a tough case. They are trying hard. We were advised to do genetic testing next. The KPU was fine, but we found C6772T MTHR mutation identified. Doctors did not mention anything about it when it was on results, so I did not think there was a problem. Since then...I called naturopath and she said it would not be causing all of my child's trouble. I was told recently that this "mycoplasma phnuenonaei" could be a problem. Going to Dr. B. Thursday to discuss everything and to try to IVIG covered.

[JuliaFaith]

Is your dd on an anti-fungal? It seems this would be something to do right away. The last one my son was on was tinidazoloe, rather strong but helped quickly with symptoms. There are many others too.

[MamaOnAMission]

The spit test was Biohealth diagnostics, says adrenal stress profile. I think we did another with too. I am checking. The MTHERR mutation says:

This patient's sample were analyzed for the MTHFR mutation C677T AND A1298C. A single copy of the C677T mutation was identified. Results for the A1298C mutation were negative. The diagnosis of hyperhomocysteinemia can not rely on DNA testing alone but should take into consideration clinical finding and other studies, such as serum homocysteine levels. Because MTHER mutation and their associated risks are inherited, genetic counseling is recommend. Thanks for helping.

 

It also says this on tests that Dr.T did...(test done several years ago)

 

 

Clinically significant amount of M. pneumonia antibody not detected.

Low Positive 770-950

M. pneumoniae specific IgM presumptively detected. It is recommended that another sample be collected 1-2 weeks later to assure reactivity.

Possitive >950

Highly significant amount of M. pneumonia specific IgM antibody detected.

 

I am so thankful for your help.

Edited February 18, 2013 by Lilly

[lfran]

Well, that means that she is heterozygous for the MTHFR variation and this can impact her ability to process folate, although not as much as if she was homozygous for the variation. That whole cycle is involved in neurotransmitter formation. You might want to check old posts, because LLM has posted that her daughter also is heterozygous for this and supplementing small amounts of methylfolate has helped her enormously.

 

As for the M. pneumonia, I think that maybe what you reported here are the reference ranges. Those reports are hard to read, but they usually give three reference ranges like what you posted, and then somewhere near those ranges are the actual value for your daughter. If you look at it again, maybe that will jump out.

 

Actually, I just checked my son's results for M. pneumonia. Right after the words M. pneumonia IgM Abs is a value like < 770. Then lower and to the right are the words that you posted. That means that my son's value was < 770, which is negative -- he does not show antibodies to M. pneumonia. There should also be similar information for IgG Abs, but the reference ranges are different (like < 100).

 

Hopefully that helps. If your report looks like mine, why don't you post again what her levels are. Maybe, like my son, she's actually negative for this and that would be one avenue you wouldn't need to pursue right now.

 

Let me know, please, if this doesn't make sense.

 

The spit test was Biohealth diagnostics, says adrenal stress profile. I think we did another with too. I am checking. The MTHERR mutation says:

This patient's sample were analyzed for the MTHFR mutation C677T AND A1298C. A single copy of the C677T mutation was identified. Results for the A1298C mutation were negative. The diagnosis of hyperhomocysteinemia can not rely on DNA testing alone but should take into consideration clinical finding and other studies, such as serum homocysteine levels. Because MTHER mutation and their associated risks are inherited, genetic counseling is recommend. Thanks for helping.

 

It also says this on tests that Dr.T did...(test done several years ago)

 

 

Clinically significant amount of M. pneumonia antibody not detected.

Low Positive 770-950

M. pneumoniae specific IgM presumptively detected. It is recommended that another sample be collected 1-2 weeks later to assure reactivity.

Possitive >950

Highly significant amount of M. pneumonia specific IgM antibody detected.

 

I am so thankful for your help.

[MamaOnAMission]

Thanks.

Why does it say that she needs to be tested in 1-2 weeks then?

And why does it say antibody detected. Phew! they are hard to read. Wish I could send you a snap shot of my report, because I don't see the numbers your talking about. Would u mind if I emailed them to you? or is there a way to post them here??? thanks, Lillt

[lfran]

Sent you a PM.

Thanks.

Why does it say that she needs to be tested in 1-2 weeks then?

And why does it say antibody detected. Phew! they are hard to read. Wish I could send you a snap shot of my report, because I don't see the numbers your talking about. Would u mind if I emailed them to you? or is there a way to post them here??? thanks, Lillt