nefferdun
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posted
Just a little update. I started the vitamins for the MTHFR mutation and I feel great. I am off all drugs. No symptoms except a nightly headache which clears with imitrex, infrequent burning in my shins and infrequent ache in one finger. Today perfectly fine - and it was a full moon last night. I slept very well last night - unheard of during a full moon.
So this might be the key for me. Having this mutation meant I could not detox the drugs which made me vulnerable to the side effects. It meant I had trouble fighting infections because my inability to assimilate B vitamins weakened my immune system. These vitamins are broken down into what my body can assimilate so I am getting what I need. My immune system is stronger. I am feeling so much better.
One quarter of the population has this mutation so if any of you are having trouble finding your way to remission - I would encourage you to get tested. The test is about $150.
I don't remember reading about this in any books on lyme and no lyme doctor has ever mentioned it to me before. Given my history, it is a no brainer.
Why do some people need to have amalgams removed and others are fine? Because having this mutation makes you more vulnerable to heavy metals. 98% of autistic children have this mutation and it really was the vaccine with mercury that changed their lives.
This mutation makes you more likely to develop sensitivity to gluten and dairy. All that stuff Dr. K requires is related to this mutation but he never addresses the mutation!
Well, maybe I will crash and get very sick again. But I am so hopeful. I thought I should wait before posting - not jump the gun. But I just wanted to share - shout it from the roof tops and also clear up whatever negative stuff I said about the doctor. I think she is only doctor that has told me anything I did not already know.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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manybites
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It seems like you need to treat and make breaks and continue with your vitamins.You can not ignore the infections but the vitamins are the most important thing for your system now.
You will know when you need to treat and jump on it.Having this infections in and let them exsplode is dangerous.
You have them just at the shin bone and fingers,Imagine them spreading fully in your head.
Just have breaks and take the vitamins as well .It might take longer to be in treatmnet than the others but you still need to treat,
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lyme in Putnam
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god bless
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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momintexas
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Great that you are feeling better!
May I ask what vitamin you are taking?
Do you have one copy of the gene or 2?
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seekhelp
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Awesome news. I have one copy of this gene. What does this mean for me? My LLMDs never said anything about it. I saw 4 different ones over the years.
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Jane2904
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Glad to heat Neff. That is wonderful news!!
Daughter has one copy, but does not seem to tolerate the correct doses.
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sparkle7
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Good news!
Is it possible that your symptoms were due to toxic side effects of the drugs rather than a pathogen?
Do these mutations become corrected or do you have to take the vitamins for life?
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gigimac
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That's awesome, I'm glad you are feeling better! Would you mind sharing what vitamins you are taking for MTHFR mutation?
Posts: 1535 | From Greensboro NC | Registered: Aug 2011
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I got Folapro, Intrisi B12/Folate, Phosphatidyl serine complex and neurological health formula.
It could be I was having toxic side effects to the malarial drugs - which if you look them up are the same as babesia. It is hard to know. Perhaps it is suppressed for now - better yet cured, but I doubt it.
My CD57 was low when I last had it tested in October. If things get worse I will go back on drugs but right now I am doing ok.
You do have to take these vitamins for life. Just like lyme, many doctors dismiss this mutation but it is responsible for a lot of chronic conditions. This is an interesting site:
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Couldn't find the Folapro and Intrisi Biz/Folate ??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
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- Thanks so much for this link and sharing this great report. So glad you are feeling better.
I've been putting off learning more about methylation issues for a long time but now it's time. Your note is encouraging. -
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fflutterby
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neff do you take other supplements as well, while on this protocol ?
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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nefferdun
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Maybe this link will get you there lymetoo.
Put folapro into the search and then scroll down. These are the vitamins listed to take on Dr. J's site (the LLMD pediatrician). There may be other's someone else recommends.
I just got an email from a ND that has a site answering questions about this mutation (I gave it above). He told me my son's diabetes could be related to this mutation. My daughter has ADD and allergies to nickel causing fibromyalgia. All of this relates to this mutation.
So even if someone in your family does not have lyme, it could affect them in some other way. Just makes sense to look into it to find out if this could be affecting you especially if you stay sick for a long time and have trouble tolerating the drugs and/or detoxing the neurotoxins from the die off. Just being deficient in B12 can give you all the symptoms of lyme disease.
I feel like this is getting a touch down for our side.
It is as big an eye opener for me as babesia is another infection that does not respond to antibiotics - oh duh, so that is why I am not improving. Ok let's use anit-malarial drugs.
Someday the turtle will cross the finish line.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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sparkle7
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I've been reading about this for a while but never actually did it. The prices are good at the website you posted, nefferdun.
I don't know if the test is necessary - one could just get the vitamins & try it... One thing I have read is that you may want to start off slowly & ramp up the doses. Some people get detox reactions - especially people who are very ill or who have CFS.
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manybites
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sparkle how do we know which one of these to take..
I know nefferdun suggested but on your link there are many other products.
Is Nefferdun sugestions the combo that need to be taken ?
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Tincup
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So good to hear you are doing better neff!!!
I've been trying to research and learn about MTHFR and post what I've picked up for others so they wouldn't have to pour through tons of complex studies to get the info.
It isn't well organized yet on the site, but good to know you were able to pick out some things that could help you!
A while back I added some more notes I took to the Dr. J's Kids website on MTHFR.
Here is one page. It also has a list of medications and supplements to avoid if you have the MTHFR disorder.
Tincup
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posted
I also added a page telling about the dangers of having MTHFR and using nitrous oxide (laughing gas used in surgery or dentists offices) that everyone with a MTHFR disorder should read.
Even if you don't have the disorder it may be helpful to know.
canefan17
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posted
Seems like Folate is the X-factor ingredient in this vitamin protocol.
B12, multivitamin, phospho serine, and folate in large amounts.
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nefferdun
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Tincup, that is where I got the recommendation for which vitamins to order. When I first started I did have a very depressed day which is part of detoxing, and loose stools. I have headaches every night.
But I am sleeping better and feel much better emotionally and physically. Not sleeping well and frequent nighttime urination is one of the symptoms of the mutation. I did not get up last night. That is a rarity. I have been getting up every night since I was a little child.
Here is a bonus I picked out of the list of what this mutations is related to:
"This is the gene (1298) that codes for genius."
It also is related to dementia. Alas. You know where I fit in. But I have been playing piano and that is recommended to keep you mentally fit.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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manybites
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nefferdun and tincup thanks so much for the information you included in this topic.
I just ordered the 5 vitamins that are necessary for my son.
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nefferdun
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Great manybites. I sure hope it helps him. Remember to start slowly by cutting them up, like Dr. J recommends, especially with a child.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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manybites
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Will do thanks .
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BoxerMom
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I was given nitrous oxide about 30 yrs ago and I HATED it!! I never let them give me that. Don't need it anyway. Maybe now I know why it didn't "gel" with me!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I believe it can get complicated since this is indicated for a number of conditions such as autism, CFS/ME, Fibro... but Rich Van Konynenburg, Ph.D. came up with a simplified protocol based on Dr. Yasko's findings that would be easier for people who are ill to do at home on their own.
---
The Five Supplements
Here are the five supplements, as found in Dr. Yasko's book "The Puzzle of Autism," (p. 49) and as described in detail on her website http://www.holisticheal.com :
1. One-quarter tablet (200 micrograms) Folapro (Folapro is 5-methyl tetrahydrofolate, an active form of folate, which is sold by Metagenics with a license from Merck, which holds the patent on synthesis).
2. One-quarter tablet Intrinsic B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, also known as folinic acid or leucovorin (another active form of folate), 125 micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of calcium, 17.25 milligrams of phosphorus, and 5 milligrams of intrinsic factor).
3. Up to two tablets (It's best to start with one-quarter tablet and work up as tolerated) Complete Vitamin and Ultra-Antioxidant Neurological Health Formula from Holistic Health Consultants (This is a multivitamin, multimineral supplement with some additional ingredients. It does not contain iron or copper, and it has a high ratio of magnesium to calcium. It contains antioxidants, some trimethylglycine, some nucleotides, and several supplements to support the sulfur metabolism.)
4. One softgel capsule Phosphatidyl Serine Complex (This includes the phospholipids and some fatty acids)
5. One sublingual lozenge Perque B12 (2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract)
Treatment Tips. The first two supplement tablets are difficult to break into quarters. One of the PWCs who is following the simplified treatment approach has suggested that an alternative approach is to crush them into powders, mix the powders together, and divide the powders into quarters using a knife or single-edged razor blade and a flat surface. The powders can be taken orally with water, with or without food, and do not taste bad.
Some people have asked what time of the day to take the supplements. A few have reported that the supplements make them sleepy, so they take them at bedtime. If this is not an issue, they can be taken at any time of the day, with or without food.
----
I'm interested in how this would be compared to the KPU protocol & if they would help if you did both. They both address very different aspects of detoxification.
There's also the mold issue as studied by Dr. S of MD-
I don't know if there's a simplified protocol for that. I'm not sure if that's the one where people take clorestramine & Actos. I believe Actos had a problem or recall. I'm not sure if there has been any replacements or ways you can work with this through supplementation.
These are complicated things & it taken me a long time to try to understand them. I still don't totally understand them & there is controvercy around these theories... but if they work for some people - great!
SIMPLIFIED TREATMENT APPROACH FOR LIFTING THE METHYLATION CYCLE BLOCK IN CHRONIC FATIGUE SYNDROM (March 30, 2011 Revision) Rich Van Konynenburg. Ph.D. (Based on the full treatment program developed by Amy Yasko, Ph.D., N.D. which is used primarily in treating autism [1])
SUPPLEMENTS
1. General Vitamin Neurological Health Formula [2]: Start with one-quarter tablet and increase dosage as tolerated to 2 tablets daily
2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily
3. MethylMate B [4]: 3 drops under the tongue daily
The fourth supplement comes in capsules that contain 800 mcg. It will be necessary to open the capsules, dump the powder onto a flat surface, and separate it into quarters using a knife to obtain the daily dose. The powder can be taken orally with water, with or without food.
These supplements can make some patients sleepy, so in those cases they take them at bedtime. In general, they can be taken at any time of day, with or without food.
Phosphatidyl serine can lower cortisol levels. Patients who already have lower than normal cortisol may wish to substitute lecithin [7] (at one softgel daily) for supplement number 5 above. Lecithin is also available from http://www.holisticheal.com.
GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.
[1] Yasko, Amy, Autism, Pathways to Recovery, Neurological Research Institute, 2009, available from http://www.holisticheal.com or Amazon. [2] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC. [3] Hydroxy B12 Mega Drops is a liquid form of hydroxocobalamin (B12), supplied by Holistic Health Consultants. 2 drops is a dosage of 2,000 mcg. [4] MethylMate B is a liquid form of (6s)-methyltetrahydrofolate supplied by Holistic Health Consultants, based on Extrafolate S, a trademark of Gnosis S.P.A. 3 drops is a dosage of 210 mcg. [5] Folinic acid is 5-formyltetrahydrofolate. one-quarter capsule is a dosage of 200 mcg. [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center. 1 softgel is a dosage of 500 mg. [7] Lecithin is a combination of phospholipids without phosphatidylserine. One softgel is a dosage of 1,200 mg.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I take Deplin which is prescription folate that my insurance pays for and daily methlycobalamin injections to deal with this mutation.
The over the counter items suggested here did not do it for me.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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nefferdun
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I did not start with such a low dose. I think that is intended for autistic children and maybe some very toxic adults. I took one folapro the first day, then added the intrisi B12/ folate the second day. I felt a little depressed and had diarrhea but the next day was fine.
I added the last two supplements the third day. I took everything once a day. I noticed the directions said to take the neuro health and phospha. three times a day so I upped it yesterday. That hit me this afternoon. I felt more tired than usual but otherwise ok.
I am going to ask the doctor about taking the prescription folate. I bet is is a lot more affective. I think some people refer to these prescriptions as "medicinal food".
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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17hens
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I'm sorry if I missed it ( I just reread neff's other MTHFR thread and can't find it there either) but where should the test be done? I see it mentioned a few times that the test costs $150 but which lab should be used?
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Dekrator48
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The required methylation supplements are also available as a 4-product pack on the Prohealth website (and also available individually):
Rich Van Konynenburg, Ph.D. posts on the Prohealth ME/CFS and Fibromyalgia board under the screen name richvank.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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TF
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17hens, I found the answer about testing on one of the links. Go here:
"7.Which lab do you go through for your MTHFR testing? Spectracell Labs. Quest also does it."
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17hens
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Thank you, TF!!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Tammy N.
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I've noticed a big difference since I started Falopro, L-Carnatine, and methyl B12 injections (per Dr. K's recommendation).
I've always known I had issues but no doctor was able to help (except Dr. K, just recently). I don't know how much he knows about it all, but at least I have a good start. I can ask more when I see him next (maybe April??)
So much of this clicks with me.
When I was in my 20s a dentist friend of mine offered some nitric oxide for kicks. As soon as it started my reaction was immediate... "STOP!". It was almost like danger bells were ringing.
I wonder if/how this ties in with elevated bilirubin (Gilbert's syndrome). I bet there is a correlation.
Do any of you have issues with B3 (niacin)? It's an issue for those with Gilbert's. I think this is part of why some supps with B3, and B-complex sometimes doesn't fit right with me (but I don't know for sure.... still trying to figure this out).
Great thread. I've been trying to follow all the MTHFR stuff I see on this site. Have been so busy trying to get our lives back on track that I barely have time to read. But I've been feeling pretty darn good:) Thanks for sharing all of this good info above.
Have a great day, friends. Tammy
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nefferdun
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This is blowing my mind.
ALL OF MY LIFE (and I just turned 65 years old) I have had extremely dark circles under my eyes. In a picture of me when I was 4 years old, I looked like a little raccoon. In high school kids asked me if I had been hit in the face. No amount of concealer could erase what looked like a bad bruise.
It is much lighter! I keep looking at them in very bright lights to be sure I am not still asleep and imagining things. I will ask my husband as soon as he wakes up but I feel it is really much lighter, not just a little bit.
Dark circles can be caused by a B12 deficiency. Part of the mutation is blood clotting. This is noticed when you have periods. It is the reason you have miscarriage because there is clotting in the tiny vessels supporting the baby, basically strangeling it's life. I also bruised very easily and kept the bruises for a long time. I often did not even know how I got the bruise. It puts you at risk of blood clots.
This is unbelievable. My kids have dark circles too although not like mine. I ordered the vitamins for my son already and I will get them for my daughter today.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nonna05
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posted
any doctor can order test????/ Lab corb????
won't b shots break through this mutation?/
so glad you are feeling better...
what made her think of this for you>??? symptoms etc?/
thank you
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Tammy N.
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neff -- I am so HAPPY to be reading your updates. Your path has just been made a lot more visible. You WILL get better..... you ARE getting better!
Best to you.
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17hens
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I agree, Tammy. I'm almost in tears reading this. I'm so so so so glad you are feeling better, neff!!!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
You guys are awesome! Thanks for all the good info!
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Tammy N.
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I'm stunned with how much better I'm feeling myself.... and I'm new with this protocol. It doesn't even look like I'm on a full protocol.... according to the list of supps on that site, but since I'm feeling good, I'm just going to stay with what I'm on for now.
I have lots of energy right now. Waking up early, almost too excited to lay there.... I want to get up and go. Such a welcome change!!
For me, I wasn't sure if it was parasite treatment or this protocol. But since parasite treatment got cut short for me (because of hellish reaction to Alinia), I'm wondering if it's more because of this methylation issue. (Either was, it was still good to kill parasites. I'm restarting treatment that now also).
Finally, my other doc in Dr. K's office suggested I order the homeopathic remedy called K-Methyl (from Biopure Europe). I just received it in the mail. Haven't started yet. Again, I'm feeling good, so I don't want to rock the boat right now. But I'll probably start slowly in the next few days or so.
My best, Tammy
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Dekrator48
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Good article:
A Simplified Methylation Protocol is Effective for the Treatment of Chronic Fatigue Syndrome and Fibromyalgia ProHealth.com by Neil Nathan, MD May 11, 2011
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Dekrator48
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Might be helpful to read:
Q&A on the Simplified Methylation Protocol with Neil Nathan, MD ProHealth.com by Neil Nathan, MD June 22, 2011
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Dekrator48
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Helpful video link in this article:
Video of Rich Van K's ME/CFS & Methylation seminar in Sweden ProHealth.com October 5, 2011
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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nefferdun
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Those are great links. I ordered the book and also ordered one of the supplements I was missing. I have got them on order for everyone in my family.
It excites me even more that I was not supposed to see any results immediately as it takes 6 weeks or more for most people to see a difference. That is more to look forward to.
It was interesting that one doctor said to treat lyme first and then do the methylation. I thought this would help boost the immune system so the treatment for lyme would work better.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Bugg
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Neff-
This is wonderful news..
Are you homozygous or heterozygous for the MTHFR allele? I thought if you were just homozygous you didn't have any issues...this gets very confusing for me....
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fflutterby
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This is exciting. When I got an MRI last year with contrast. Two weeks later had a Doctors Data test done, they found the gadolinium was still in my system. My neurologist said it wasn't a concern but it should have been out of my system by then. Now I wonder if it is because I am not able to detox !!!
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
My LLMD ran the test through Labcorp at my first appt. It was covered by insurance. I was found to have the mutation and he put me on deplin and B12 injections. I could not tolerate deplin, so he switched me to metafolin 800mcg per day.
I, too, noticed a huge difference in my undereye circles, energy,sleep and neurological symptoms. I still need to be consistent with the B12 shots and will add some of the above listed supplements to see if they help as well.
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sparkle7
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OK! I decided to go for it with this protctol. I'm not doing the tests - I figured I'd just do the protocol & see how I feel. I dowsed it & it gave it a "yes". I'm going to go with the revised protocol as suggested by Rich Van K -
1. General Vitamin Neurological Health Formula [2]: Start with one-quarter tablet and increase dosage as tolerated to 2 tablets daily
2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily
3. MethylMate B [4]: 3 drops under the tongue daily
It will probably be here sometime next week. I'll post any updates if/when I'm feeling better... I usually like to see how these things pan out over time. I've been reading about this one long enough - I guess I just have to dive in & try it.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
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FYI - about all of this...
Chronic fatigue syndrome and autism by Richard A. Van Konynenburg
The triggering factors for autism and chronic fatigue syndrome are also largely different. Although this subject remains controversial, there appears to be substantial evidence that vaccinations (containing either a mercury-based preservative or live viruses, many given within a short period of time) were responsible for triggering many of the cases of autism in genetically susceptible children (D. Geier and M.R. Geier. International Journal of Toxicology. 2004 Nov-Dec; 23(6):369-76; and A.J. Wakefield, several publications beginning in 1997).
In CFS, a variety of triggering factors (physical, chemical, biological, or psychological/emotional) have been found to be involved in various cases, as reviewed in my poster paper, cited above. All these factors have a demand on glutathione in common.
It appears that genetically susceptible persons are unable to maintain normal glutathione levels when the total demand is high, and that once glutathione drops sufficiently in a genetically susceptible person, the sulfur metabolism becomes disrupted. In many cases, the methylation cycle (part of the sulfur metabolism) becomes partially blocked, and the result can be a depletion of some or all of several important sulfur-containing metabolites, including S-adeno-sylmethionine (SAMe), cysteine, glutathione, taurine, and sulfate.
A vicious circle is thus formed, and the depletion in these metabolites causes an avalanche of pathogenesis, since they all perform important functions in the body. I think that much of this pathogenesis is common between autism and CFS. In autism, the loss of methylation capacity because of the drop in SAMe appears to be responsible for much of the interference with normal brain development.
There is also a major difference in the sex ratio between autism and CFS. In Autism: Effective Biomedical Treatments, author Dr. Jon Pangborn discusses possible reasons why autism is more prevalent in boys.
In the paper I presented to the AACFS, I suggested a hypothesis to explain the female dominance in the prevalence of CFS in adults. I think that the reason why the people who have developed CFS as adults did not develop autism as children (even though I suspect that they have the same or a similar genetic predisposition) is that fewer vaccinations were required when these patients were children.
The schedule of vaccinations required for children in the US has grown substantially over the past two or three decades, as has the incidence of autism. This is also true in the UK.
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I saw 4 different ones over the years.
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