There are many things that can happen to someone when methylation is not working correctly. One of the most devastating things to deal with would have to be mold and mycotoxins along with MTHFR A1298C and C677T. If methylation is not working, you cannot get rid of the mold.About ten months ago I decided to build MTHFR support. I never imagined how much of a response I would get. There are so many people out there in dire need of proper medical care when it comes to methylation and there are only a handful of doctors around the country that actually understand methylation. Many of these people have nowhere to go and I hope to change this. Like my grandmother who took in the homeless, I cannot turn a blind eye to the sick who can be healed but are kicked to the curb like a piece of unwanted trash forgotten and misunderstood by allopathic medicine. Abandoned!
Several months back, I was introduced to Colleen Murphy (Colleen is in the photo above). She told me that she had tested positive for fourteen types of molds and three deadly forms of mycotoxins and was on the proper treatment but was not responding well and only getting sicker and sicker. The first thing that came to mind was gut health and methylation. Knowing what I know about hypomethylation, I knew that Colleen must have this pathway jammed.
As I spoke more and more with Colleen, I knew exactly how she was feeling. Having to leave her family and friends behind because every time she gets near them, mycotoxins cause extreme burning. Just speaking with her on the phone, I can understand how she feels, alone, scared and abandoned. She cannot walk into any of her friends’ or families home without the mycotoxins burning her like fire. Colleen has not seen her daughter in six months because every time she is near her little girl, she is affected by mycotoxins and has severe nerve burning all over her head and skin. Any time I speak with her, she cries and asks me if she will ever be able to take care of her daughter again. I am hoping to change this today!
This is what Colleen looks like today from deadly mycotoxins and doctors not understanding that MTHFR and methylation must be working for the body to be able to dump the mycotoxins.
Colleen’s life on a daily basis is a living hell. She gets up in the morning and heads out to a day center at 8:30 in the morning when they open and heads back home at 5:30pm when they close for the evening. Once home, Colleen normally stays outside because every time she walks into her home, her skin and head starts burning from the deadly mycotoxins that are attacking her myelin sheath. Sadly Colleen cannot find a doctor in the Seattle, WA area that would be willing to learn about methylation, gut health and mycotoxins. I am hoping to change that today.
Most mainstream medicine does not understand what Colleen is experiencing. There are so many people out there suffering with mold and mycotoxins and are labeled “mental”. Likewise, many of the doctors out there treating mold and mycotoxins do not know about methylation. Their patients that do not respond well to mold treatment are usually left to die. Well mold community, here is another piece of the puzzle.
http://www.heartfixer.com/AMRI-Nutrigenomics.htm This about sums up where Colleen is having problems at.
What is MTHFR and why must MTHFR be working in order to dump mycotoxins? It is the methylenetetrahydrofolate reductase enzyme. When you have a defective SNP (singular nucleotide polymorphism) you cannot effectively convert folic acid into the active form of folate. As you can see, this is just one gene on this methylation pathway that can get jammed. MTHFR is needed to be working properly in order to create glutathione. Glutathione then helps in the dumping of toxins which include mold and mycotoxins. With adequate levels of glutathione, disease cannot live in the body. Unfortunately, many people cannot just get IV glutathione and get well. If you look at the diagram above there are other enzymes that play a role in this pathway and when CBS is involved, iv glutathione is contradicted until the transulfuration pathway is cleared. I hope to raise enough money to be able to get Colleen tested for these other gene snps.So far we know that Colleen is compound heterozygous for MTHFR A1298C and C677T. Unfortunately, there are also the other SNPs on this pathway that must be looked at in order to get her glutathione levels up. This is where we need your help with Colleen. Getting a methylation SNP panel done on her and a Metametrix GI Effects stool analysis would be a start. These two tests could be the beginning of Colleen’s healing journey. With the help of doctors that understand methylation and some additional testing there is hope that we can get Colleen’s glutathione up enough to start dumping these deadly mycotoxins. Remember, sometimes bad things happen to good people and this is exactly what has happened to Colleen. She has a long road ahead of her on this healing journey. My wish is to see Colleen in the next year to be able to hold and hug her daughter without pain from deadly mycotoxins.
I reacte horribly to the consumption of a wild mushroom known as morel mushroom or commonly sponge mushroom.. I also have been sickly all of my life and I am researching possible genetic connections to my condition.. I am scheduled to send my blood to a researcher but i want to explore options of testing.. as he said he will also target for others than the potassium sodium channel genes he plans on checking..I have been reading your site about mthfr mutations and I am thinking perhaps this is another consideration for a genetic panel he should examine.. through my ancestry work I have identified possible askanazi jewish ancestry.. an ancestor may have been a crypto jew in new france.. and the researcher may check for these possible panels.. if however i go ahead and have a mthfr panel and an askanazi panel done I will be able to send any raw data to him for analysis.. I am very blessed in this respect..which panels do you suggest for me.. Im thinking i should also have suox karen
We don’t have the potassium channel genes up but would be willing to look for them on 23andme. We are helping people who do their testing to find what they can through 23andme. The test is only $99. So if you plan on doing the test, you get things related to IgA, IgE, IgG, tetrahydrobiopterin, sulfonamides, clotting disorders, detox, methylation, allergy/mold, celiac/gluten intolerance, thyroid, other immune factors, eye health and tongue tie/cleft palate when you do my app.
Sterling,
I just came across your website and Facebook page a couple of days ago. Thank you so much for all of your hard work. I ordered my 23andme kit a few days ago. I had Stachybotrys (toxic mold) growing in our laundry room which is our main entrance to our home. We had it profess ally remediated but I have yet to recover. I was quite ill and can smell mold a mile away now. I am having some serious issues with adrenals I guess. Some days I can barely function but I am still working full time. Luckily I’m a mental health counselor and have a comfy couch for napping when needed.. I have so many of the symptoms of MTHFR and “friends”. I am anxious to get my kit then wait the 6 to 8 weeks they say it takes to get the results back.
I hope you get some more answers by looking at your genetics. And you will learn how methylation, diet and the gut have to do with not only mold but mental health as well. You can join us on FB and read some of the posts by some of the doctors and nutritionists.
Sterling
Sterling, if anyone can figure out the answer to my question, you can. Here’s a link to Dr. Ritchie Shoemaker’s webpage on lab testing for genetic mold sensitivity. (Note especially the data in the Table on this webpage.)
http://www.survivingmold.com/diagnosis/lab-tests
My question is that I can’t figure out how to translate his HLA-DR and HLA-DQ nomenclature into 23&Me’s SNP and rs jargon.
I’m sure that there are plenty of mold sensitive patients out there who would be interested in how to interpret their 23&Me data to match the method of reporting used by the lab that Dr. Shoemaker uses. (I’m pretty sure that Dr. Shoemaker uses Lab Corp for this test, as evidenced by his office’s lab requisition order form – link below.)
http://www.survivingmold.com/docs/Diagnosis/Lab%20Orders/Physician%20Order%20Sheet_8_31_2011.xls.pdf
If you can figure this puzzle out, would you please post the explanation either here in your blog or else post it in the Yahoo MTHFR forum where I think I’ve seen some of your messages — or better yet, post it in BOTH places so that everyone will to know about it and can point it out for benefit of other mold victim newbies in the future. TIA.
I’m familiar with Dr Shoemaker’s tests, and I don’t believe there is a direct correspondence. In addition, I have come to feel that his work, while ground-breaking and hugely helpful, falls short for “non-responders” like us. Basically, he just says that people with the “dreaded” genotype may never get better. I think this is because he relies soley on medications to treat bio toxin illness. He did his primary research before all of this new information has come out and, I believe has yet to move his research forward in this area to keep up. I have never seen anything in his work that indicates that he knows the mechanism related to the non-responder trait, just that it exists. It would be so amazing to find out for sure which aspect (because it surely is an aspect) of methylation is the root cause! I was sickened a few years ago from a mold infestation in our house, and still suffer the effects -I haven’t been able to find a doc in my area who is knowledgeable about methylation who can put the pieces together for me, so I am trying to educate myself enough to get it sorted out mostly on my own. It’s difficult, though, because my worst symptoms are brain fog and fatigue, so it takes effort. I hope this thread stays alive so that we can all share any news about treating biotoxin illness related to methylation defects!
Yes,
Sadly Dr. Shoemaker really needs to look at someone’s genetic makeup. He is getting the sickest of the sick and unfortunately many that he has tried to put on his protocol and got even worse instead of delving into their genetics just says sorry I can’t help you. Sad, because there are answers out there and protocols are garbage. What mechanism that go you ill did not get me ill. That is just the way it is. 2 people with mold. 2 people with different genetics. 2 people with different pathways to unblock.
Hoping he will see the light soon. Many big names are. Dr. Klinghardt is one who is waking up to this.
The pictures are not showing up on this page.
Thank you Sue, this will be fixed soon!
The pictures still aren’t showing up. Are they before and after pictures. Has Colleen’s health improved at all since looking into her genetics?
I am doing my best to get things back up and running. Will forward this to my web manager. Colleen was so sick when she came to us and living on her own and not following through and extremely brain fogged there was not much that we could do. I did everything I could to get her local help but sadly there are not many practitioners out there that will take pro bono cases and most of them like Klinghardt said that they could not help her. With that she is now in a skilled nursing facility and they say some days she cannot even speak. I have been so heart broken over this. We did have a practitioner that tried to help her while in this facility but could not get through.
Sterling
Sterling — please get in touch with me by private e-mail. I know a mold doctor (infectious disease specialist) who deals with these types of mold cases — and it’s not the Shoemaker protocol.
I’m glad we chatted today. I wish we could help Colleen. Family support is so important especially when neuro issues are involved. Family has to be proactive.
Sterling
Wow. I’ve never thought highly of Klinghardt, and that just confirms my opinion. He has dozens and dozens of reasons why people become chronically ill, yet he said they couldn’t help her? Money talks, I guess…
I am in a similar situation, albeit coupled with lyme as well. I have tried iodine, clay, boron, and cholestyramine for the neurotoxins. The iodine and boron help a tiny bit but just barely (i’m taking 300-400 mg of lugol’s a day and 6-7 grams of SSKI a day). I have tried cholestyramine in the past but could not tolerate it at all. It impacted my digestive tract and I am still suffering hemorrhoids from that over three years later. Clay and chlorella help…but just barely.
Massive doses of sublingual methylcobalamin seem to help the most of the neuro issues but it only helps for an hour or two! If i take 30 mg of methylcobalamin sublingual it clears up the neuro symptoms for a bit but they always return with a vengeance. I have considered upping my methylfolate intake after reading Freddd’s protocol. He apparently takes up to 30mg of sublingual methylfolate. I have never gotten above 10mg due to hyperactivity and stimulation.
i am still searching for the magic bullet for these damned mycotoxins. My ears are constantly ringing and I’m getting visual trails (isn’t it wonderful feeling like your on some sort of toxic LSD all the time???). ugh, wish I knew what to do next.
I am looking at this wonderful thread from last year. Is there any updates on protocols or approaches for many of us who are suffering from biotoxic illness? I recently did the report and trying to understand what genes play a role in this illness? Any input is greatly appreciated.
Hi! Protocols don’t work for everyone. I recommend you post this question in our Forum, because our community is full of people who share similar health issues and could be better at help here. I would also recommend you keep up-to-date with our Facebook page and listen to our Blog Talk Radio episodes located here: http://mthfrsupport.com/radio-show/
Hi Everyone, I had problems with mycotoxins. You might also check for a CBS mutation. This will make your bodies have high levels of sulfur and high levels of phosphorus. Mold and fungus is made up of phosphorus and that is what they eat. So try going on a low phosphorus diet and take CALM magnesium carbonate since it binds excess phosphorus. This will reduce the phosphorus in your system and give the mold less to eat. Also try taking a product called Candex, which destroys the cell wall of mold/fungus.
Avoid foods high in oxalic acid, and msg since both deplete B6. Supplement with ionic liquid magnesium chloride, because if you are magnesium deficient, then you will not be able to absorb any vitamins you might take.
If you are having pain, avoid calcium and vitamin D supplements. Zinc can also cause more pain as well.
I suffered through a very bad mycotoxin infection and got through it doing these things.
See Dr. Jockers site for the low phosphorus diet he recommends for CBS mutations. Low phosphorus diet plus magnesium supplementation and the Candex, will starve out the pesky and life threatening mold that is trying to live in your body. I used to get UTIs and yeast infections and sick headaches and joint aches all the time and now I never have uti’s or yeast infections, and I rarely ever get headaches etc.
Good luck!