Hello, Im Stuart and im 22 years old, i have been experiencing terrible brain fog and tiedness for around 14 months ill also mention that i suffer from sherman's disease. I had been to several doctors and tried all sorts of alternative treatments with no luck until i found a doctor that tested me for a mutated MTHFR gene. The tests show that i have a Heterozygous mutation and also low DHEAS. I have just began treatment that includes a no carb healthy diet and a variety of other mediction - 5-MTHF tablets, folinic acid, metagen B12/Folate, oxident protection, krill oil, dr mercola multi and whey protein.
Im wondering if there was anyone else out there that is suffering like me or iff you are taking the same medication???? Plz let me know
Hi Stuart. You are so lucky they caught the MTHFR so young. Did they tell you if you have 1298 or 677. That means lots with MTHFR. I am happy that the doctors have you on the right path. Are they telling you to eat all organic foods? Have they tested you for gluten intolerance yet and celiac's? Have they checked your homosysteine and your glutathione levels? Have they checked what heavy metal poisonings you have yet? They can't do this by the hair. People with MTHFR usually come out a false negative with the hair test. They usually give you IV glutathione and a DMSA dosage and then a heavy metal urine toxin screen.
I'm writing a book about MTHFR
This is what I'm on so far:
Metanx which is the natural methyl b vitamins at high doses. Vitamin E, Vitamin C, Vitamin D3, magnesium, selenium and zinc. I am incorporating clay baths, infared saunas and other minerals and nutrients. I have been told to only use natural organic vegitation. Hormone antiboitic free chicken and turkey. No fish since we tend to get heavy metal poisoning. I use only flouride free toothpaste and aluminum free deoderant. I use organic makeup only since much makeup has mercury in it. I use organic household cleaners.
I wasn't as lucky as you. They let me suffer for years and because they didn't catch it, I started over clotting and getting Factor deficiencies. I got blood clots in my lungs, I got multiple sclerosis, fibromyalgia, celiacs disease and much more. Believe it or not all these things are starting to heal since I am being treated for MTHFR. The entire problem was MTHFR. It caused all of it. I even ended up with aluminum, mercury, lead, arsenic, cadmium, thallium, and xmetal poisoning. With MTHFR we cannot methylate toxins. Our metabolic pathway is shut down. Once the methyl folates start working we start dumping these toxins. Our environment is toxic to us. I am so glad that in Australia they take this seriously. Me and my fiance could possibly be moving there for a job. I am just happy that you are on the right path and never will have to endure the suffering and torture I have.
I do have much information on MTHFR and have a few thousand people with it on a database. Since this is all new to medicine we get together and talk about what treatments are working and what treatments are not working. You are more than welcome to get back with me anytime. I know doctors who have the disease that have turned my life around for the better.
Thanks alot for sharing all of that with me, any other info that you have would be greatly appreciated. I believe it is the c677t type. Do you have brainfog? I really want to know whether it is a common symptom and how long you would expect for it to clear? Lol all of the actual doctors I have seen are useless and either want to put me on antidepressants or just do nothing and say I'm I'll simply just get over it. The person that is treating me use to be a doctor and now is an alternative therapist, she has been so good she picked up on it straight away. My homocysteine levels is 7.3 which is normal but my dhea is low 3.9, I haven't really been tested for many heavy metals only lead and mercury I think. I am ATM using a clay detox which I think may be doing something cause I feel worse with the fog, tiredness and headaches. My diet is pretty plain I have to stay away from carbs, one serve of fruit, 3 serves of veg, plenty of fish as much as possible and a few serves of red meat a week. I feel so sorry for you and what you had to endure I really hope that this is what is causing my problems. Thankyou and look forward to hearing from you.
You are on a good treatment. I suppose the fish is good for you as long as you don't have mercury poisoning. My homocysteine is at a 7.2. If you go in United States you can research Dr. Rawlins MTHFR. He has lectures and has the disease himself. A great lecture to watch. And he has mind map links.
Your doctor will most likely be interested in watching the lecture since it was through the Human Genome Project. Another on is Patrick Holford nutritionist. Another one is Dr. Mark Hyman.
PS The brain fog is common and it will get better with the treatment you are on. Hugs to you and you are blessed to have foud a Wonderful doctor.
Last edited by moderator2; 07-25-2011 at 10:53 AM.
I am really for what you both have been dealing with. My situation is similiar except I still feel like garbage. Not only do I have brain fog, I have muscle spasms and myoclonous where if i grab something too hard my fingers twitch, extreme joint pain, tired all the time, possibly blood clots (even though I havent been tested yet), neurological issues such as vibrations and jerky muscles and much more.
It all started from a little lower back and feet pain. I had an MRI on my back and foot, both normal except for DDD on L4-L5 I was told its normal for someone whos 27. I went back to the foot doctor and was given Methylprednisolone. Since then my life has spiraled downward. Ever since the first pill, I have had tingling in my feet, legs, etc. I have spasms all over. I cant stand for more than 5 minutes without needing a rest. There are more symptoms, but I dont want to make this too long.
Ive been to 3 doctors, 4 blood tests, 2 MRIs, ive been told I have Lymes, Adrinal Fatigue, MS, etc. I finally got the diagnosis of MTHFR homoyzygous for C677T. Supposedly its the worst to have because the enzymes only work at something like 13% of normal. My doctor claimed that all of these symptoms "MAY" be caused by the MTHFR. She said that since I cannot get rid of the toxins in my body and I cannot process B12 that its a possiblity that the Predisone caused such a stress on me that my body basically shut down. Its been almost 4 months since the Prednisone and im still feeling terrible. I was recently put on Metanx and I dont know if I have been feeling anything as of yet. I also take Vitamin C and Acidophiles for "leaky gut". Anyway, have either of you have found any sort of result from medications?
Hey Stax, that's quite alot to deal with I'm glad mine hasn't got that bad. I started treatment 6 weeks ago tomorrow and have yet to feel any better which I am told is normal, my doctor said it could take up to 4 months to feel any change and then it would be gradual. I know another patient of hers took 3 months to feel a change but then I guess everyone is different and it may take less or more time.
No not exactly, I keep getting bounced around to different doctors and different opinions so all I was told was to take the Metanx. The one small thing that has helped was surprisingly acupuncture. Ive read online that methyl b12 shots are also a good idea, but it seems in my area they dont have much knowledge on the subject. Im up for any ideas or anything that works for a detox.
Oh ok, yeh I've tried accupunture but it didn't seem to do much for me did it help with the brain fog? Well I'm taking a clay detox and also one called pca-ex-pathica from bio-Medicals pty ltd which is made in Australia I'm not sure if you can get it shipped to the us but u probably can. I've only just started it but my doctor says it is a very good one and will clear out all toxins. Hope this helps
Ill check that out and I hope you feel better. The only thing that has really helped the brain fog has been rest and sleep. If i get too stressed or overworked, the brain fog begins. Anyway, let me know if you find out anything more that helps.
Hi Stewart, I too have tested positive for mthfr gene. I am interested in some of the meds you take. What is MTHF? I take supplements, Vessel care (From Metegenics) and SAMe(Ortho Molecular). This helps with methylation and homosystein levels. My doc tested my glutathion levels and found they were very low so she put me on these supps. You may want to test for this
FYI: I just recently went to a lecture about the toxins we are exposed to on a daily basis. This doctor sees many people with different chronic illnesses. She puts all her patients on a detox but stressed to be very careful when doing a detox when you are already sick because it can make you even sicker. Sounds like you have a good doc though.
Ive actually stopped taking all of the stuff i was on as i had no improvement. Ive realized that it is a very common thing to have around 30 or 40 % of the population has a mutation. I hope it does help you. Ive just become a christian in my search for healing. Good luck