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.
Posted by manybites (Member # 33750) on :
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,
Posted by lyme in Putnam (Member # 11561) on :
god bless
Posted by momintexas (Member # 23391) on :
Great that you are feeling better!
May I ask what vitamin you are taking?
Do you have one copy of the gene or 2?
Posted by seekhelp (Member # 15067) on :
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.
Posted by Jane2904 (Member # 15917) on :
Glad to heat Neff. That is wonderful news!!
Daughter has one copy, but does not seem to tolerate the correct doses.
Posted by sparkle7 (Member # 10397) on :
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?
Posted by gigimac (Member # 33353) on :
That's awesome, I'm glad you are feeling better! Would you mind sharing what vitamins you are taking for MTHFR mutation?
Posted by Lymetoo (Member # 743) on :
Congrats!!
What are you taking?
Posted by nefferdun (Member # 20157) on :
I believe there is more than one place where you can find these vitamins but the doctor I saw recommended this site:
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:
Couldn't find the Folapro and Intrisi Biz/Folate ??
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by fflutterby (Member # 28081) on :
neff do you take other supplements as well, while on this protocol ?
Posted by nefferdun (Member # 20157) on :
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.
Posted by sparkle7 (Member # 10397) on :
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.
Posted by manybites (Member # 33750) on :
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 ?
Posted by Tincup (Member # 5829) on :
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.
Thanks for reporting back. Good to know it is working for you!!!
Posted by Tincup (Member # 5829) on :
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.
Seems like Folate is the X-factor ingredient in this vitamin protocol.
B12, multivitamin, phospho serine, and folate in large amounts.
Posted by nefferdun (Member # 20157) on :
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.
Posted by manybites (Member # 33750) on :
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.
Posted by nefferdun (Member # 20157) on :
Great manybites. I sure hope it helps him. Remember to start slowly by cutting them up, like Dr. J recommends, especially with a child.
Posted by manybites (Member # 33750) on :
Will do thanks .
Posted by BoxerMom (Member # 25251) on :
Neffer -
So glad you are doing better. Keep us posted.
Posted by Lymetoo (Member # 743) on :
Thanks, neffer and Tincup!!
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!
Posted by jlp38 (Member # 27221) on :
Are the dosages listed for children or adults?
Posted by sparkle7 (Member # 10397) on :
Just search "Simplified Methylation Protocol". I found this but there are others-
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!
Seems worthwhile to try them.
[ 02-09-2012, 06:55 PM: Message edited by: Lymetoo ]
Posted by sparkle7 (Member # 10397) on :
FYI -
Simplified Methylation Protocol Revised as of Today
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.
Posted by faithful777 (Member # 22872) on :
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.
Posted by nefferdun (Member # 20157) on :
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".
Posted by 17hens (Member # 23747) on :
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?
Posted by Dekrator48 (Member # 18239) on :
The required methylation supplements are also available as a 4-product pack on the Prohealth website (and also available individually):
"7.Which lab do you go through for your MTHFR testing? Spectracell Labs. Quest also does it."
Posted by 17hens (Member # 23747) on :
Thank you, TF!!
Posted by Tammy N. (Member # 26835) on :
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
Posted by nefferdun (Member # 20157) on :
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.
Posted by nonna05 (Member # 33557) on :
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
Posted by Tammy N. (Member # 26835) on :
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.
Posted by 17hens (Member # 23747) on :
I agree, Tammy. I'm almost in tears reading this. I'm so so so so glad you are feeling better, neff!!!
Posted by hammer (Member # 17201) on :
You guys are awesome! Thanks for all the good info!
Posted by Tammy N. (Member # 26835) on :
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
Posted by Dekrator48 (Member # 18239) on :
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
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.
Posted by Bugg (Member # 8095) on :
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....
Posted by fflutterby (Member # 28081) on :
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 !!!
Posted by jwall (Member # 22999) on :
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.
Posted by sparkle7 (Member # 10397) on :
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.
Posted by sparkle7 (Member # 10397) on :
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.
Posted by jarjar (Member # 8847) on :
For those that watch their budget, the package that Immune pro sells is the identical products that Dr. Nathan sells out of his office. I like the idea of the B-12 lozenges versus capsules/pill also. When you add the phos. serine the total shipped to your house is 115.00 for immune pro versus 142.00 from the other site.
[ 02-11-2012, 11:21 AM: Message edited by: jarjar ]
Posted by Dekrator48 (Member # 18239) on :
This is a note from the Prohealth product site:
"Note: As Dr. Nathan's trial report suggests, another supplement considered beneficial but not central to the protocol is phosphatidyl serine.
* See "Q&A on the Simplified Methylation Protocol with Neil Nathan, MD"
It looks like the phosphatidyl serine is optional...beneficial, but not central to the protocol.
You can read that statement at the end of the product description at this link:
Bugg I haven't gotten the test results back yet. As I said I was jumping the gun with the diagnosis but as I had so many symptoms since early childhood I am positive I have it.
"The 677 variant is associated with early heart disease and stroke and the 1298 variant with a variety chronic illnesses. The MTHFR is reported out as heterozygous or homozygous. If you are heterozygous that means you have one affected gene and one normal gene.
The heterozygous MTHFR enzyme will run at about 55% to 70% efficiency compared to a normal MTHFR enzyme. If you are homozygous then enzyme efficiency drops down to 7% to 10% of normal, which of course makes a huge difference."
As you age things get worse especially when you are exposed to a lot of toxins which your body cannot get rid of. Diagnosing myself, I bet I have 1298 - I believe I am heterozygous and was assimilating at 55%. If I am homozygous, it is incredible I functioned as well as I did (before I got lyme) but it would make more sense that both of my children are affected (unless my husband also has defective genes).
I have read a lot of doctors dismiss the 1298 gene especially if it is heterozygous. This site tells more about the 1298 mutation and it's effects. This is what really rang a bell for me.
These are the first ten things listed that are improved in CFS patients and it startled me that almost everything mentioned I have always had or developed: 1. sleep disturbance - insomnia 2. thyroid supplementation 3. excess urination (especially at night) 4. low body temperature and low blood pressure 5. longstanding infection 6. decreased energy 7. brain fog, poor memory 8. hypoglycemia - I don't have this one 9. alcohol intolerance (also caffeine and drugs) 10. pain; headaches
Further down: extreme fatigue, intolerance for heat/cold, feeling stressed, not feeling like "part of the world" and inability to retain what you read. Do you know that CFS patients with this mutation have reduced killer cells? Their immune systems are compromised.
When you are wondering about which came first, the chicken or the egg - lyme disease or CFS - the mutation is something we are born with and I had the symptoms of CFS when I was a child.
When you are diagnosing, you look for the primary problem - the root of the condition. Is it lyme or is it the MTHFR mutation? Maybe our bodies cannot fight lyme disease without first addressing the mutation.
Posted by jarjar (Member # 8847) on :
quote:Originally posted by Dekrator48: This is a note from the Prohealth product site:
"Note: As Dr. Nathan's trial report suggests, another supplement considered beneficial but not central to the protocol is phosphatidyl serine.
* See "Q&A on the Simplified Methylation Protocol with Neil Nathan, MD"
It looks like the phosphatidyl serine is optional...beneficial, but not central to the protocol.
You can read that statement at the end of the product description at this link:
The fact he states it is beneficial is enough for me to add it to the mix.
Posted by Tincup (Member # 5829) on :
You know, it is so wonderful to see everyone pitching in their own information on this thread. Thank you!!!
History - We've had a sub-set of people over the years who were unable to take the antibiotic protocols that most now think are standard. Some would get so ill from trying to take what was prescribed they would want to die.... and unfortunately, many did- suicide.
People would often tell them to push through the bad herxes. Me, the queen of the big "sissy-babies" would tell them to stop the meds and let the toxins clear out, then start back SLOWLY!
I didn't know why some got so stinking sick and I had no "legs to stand on" scientifically, but I kept pushing the "sissy-baby" approach as being ok.
The ONLY doctor back then to support this way of thinking was Dr. C in Missouri. He is the first to say that too much is not ok if you get really sick- go slowly if needed.
He saved a lot of lives by coming out on that topic and standing his ground. I thanked him for his support and for helping many of our "sissy-babies" over the years.
For years though, we were both kicked hard by the non-MTHFR people for doing so, they just didn't understand, and that was reasonable because we didn't know why this was happening.
Anyhow... I think the BEST thing here is we've finally got an answer as to WHY some folks can do the protocols and why some can't. AMAZING!!!!
And it is good to know why some can take certain supplements and some can't. Each person is different.
Lesson for the day... If someone says they are too sick on a protocol- PLEASE do not push them to keep going. Herxes kill. And there is no reason for people to get so sick while treating- it can be dangerous.
I am thrilled for the folks who are learning about MTHFR and Lyme, et al, and doing better! You all are fantastic!
Posted by sparkle7 (Member # 10397) on :
I decided to go with the updated protocol (as per Rich Van K). This is what I got:
From Holistic Heal -
MethylMate B� Drops (New and Improved) 120211$14.95
HYDROXY B12 MEGA DROPS 198401$34.95
Neurological Health Formula 180 Tablets 010011$29.90
---
From Swanson -
MegaFolinic 800 mcg 120 Tabs Item #: SN3731$8.15 $8.15
Just wondering if it would be a good idea doing methylation protocol, heavy metal/toxins chelation and treating HPU/KPU at the same time?
Any recommended chelation agents?
Some people with CFS also use magnesium to calm the nerves. What kind of magnesium is usually used? I read that transdermal magnesium chloride is best absorbed?
As for HPU/KPU treatment, I'm thinking about taking The Core by BioPure.
reply from RichVanK
I favor testing to see what the issues are first, if feasible.
If HPU/KPU is present, it will deplete several of the cofactor vitamins and minerals needed by the methylation cycle and related pathways, so if it is present, it will need to be dealt with before the methylation treatments would help.
Dr. Klinghardt reportes that in many of his Lyme patients, HPU/KPU treatment will automatically bring up the methylation cycle, but I'm not sure if that's true in all cases of ME/CFS.
If heavy metals levels are sufficiently high, they will also block the methylation cycle, so if present, they may need to be dealt with before treating the methylation cycle, too.
Magnesium glycinate is the best absorbed oral form of magnesium.
I urge you to work with a physician who is knowledgeable about these aspects, because there can be serious adverse effects in some cases when these things are treated.
Posted by aMomWithHope (Member # 19255) on :
Wow, now I'm thinking I need to get my children tested for this blockage.......
Thank you for this thread--possibly another piece to solving the puzzle.
Posted by springshowers (Member # 19863) on :
"I urge you to work with a physician who is knowledgeable about these aspects, because there can be serious adverse effects in some cases when these things are treated.:
Has anyone who just did the treatment on their own without tests or guidance have any issues or side affects that they want to share and warn others about?
Posted by nefferdun (Member # 20157) on :
Rich responded to one of my posts on the yahoo site for MTHFR. He wrote that what I got is no longer used and you should get the following supplements instead. The manufacturer changed something in one of the products. This is from his post.
SUPPLEMENTS
1. General Vitamin Neurological Health Formula [2]: Start with � 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 4. Folinic acid [5]: � capsule daily 5. Phosphatidyl Serine Complex [6]: 1 softgel capsule daily (or lecithin, see below)
GO SLOWLY. As the methylation cycle block is lifted, toxins are mobilized 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.
Various patients reported some early exacerbation of symptoms, which in most cases was followed by a greater improvement in symptoms. Three of the patients found it necessary to decrease their dosage frequency to every second or third day for several days, until they could tolerate the full daily dosage schedule.
Sixteen of 30 patients (53%) reported an initial worsening of symptoms, beginning in most of these cases within 3 or 4 days, but in some cases beginning at up to 2 weeks.
Most of the symptoms were mild, and none of the patients discontinued usage of the supplements during the first 3 months. The most common side effects were gastrointestinal (pain, cramps, constipation, or diarrhea), reported by 6 out of 30 patients or 20%;
increase in pain, reported by 4 out of 30 or 13%; and increase in fatigue, reported by 3 out of 30 or 10%.
Other symptoms, reported by one patient each, were a decrease in appetite, poor sleep, weak legs, flu-like symptoms, and an increase in anxiety and depression.
For those who experienced improvement, the time to self-reported improvement on protocol was an average of 5.6 weeks, with a range from immediate improvement (which was rare) to to as long as 8 weeks before improvement was experienced.
Posted by Tammy N. (Member # 26835) on :
I'm very happy to be following this thread. I think this is BIG. I'm just taking the few things (as I listed above) per my appt. with Dr. K. And I'm feeling good. I would like to look into the other supps listed above as well. Thanks for all the links listed above..... lots of research for me to catch up on! This is all very exciting. I have not felt this encouraged in as long as I can remember.
Best to all! Tammy
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Tincup: You know, it is so wonderful to see everyone pitching in their own information on this thread. Thank you!!!
History - We've had a sub-set of people over the years who were unable to take the antibiotic protocols that most now think are standard. Some would get so ill from trying to take what was prescribed they would want to die.... and unfortunately, many did- suicide.
People would often tell them to push through the bad herxes. Me, the queen of the big "sissy-babies" would tell them to stop the meds and let the toxins clear out, then start back SLOWLY!
I didn't know why some got so stinking sick and I had no "legs to stand on" scientifically, but I kept pushing the "sissy-baby" approach as being ok.
The ONLY doctor back then to support this way of thinking was Dr. C in Missouri. He is the first to say that too much is not ok if you get really sick- go slowly if needed.
He saved a lot of lives by coming out on that topic and standing his ground. I thanked him for his support and for helping many of our "sissy-babies" over the years.
For years though, we were both kicked hard by the non-MTHFR people for doing so, they just didn't understand, and that was reasonable because we didn't know why this was happening.
Anyhow... I think the BEST thing here is we've finally got an answer as to WHY some folks can do the protocols and why some can't. AMAZING!!!!
And it is good to know why some can take certain supplements and some can't. Each person is different.
Lesson for the day... If someone says they are too sick on a protocol- PLEASE do not push them to keep going. Herxes kill. And there is no reason for people to get so sick while treating- it can be dangerous.
I am thrilled for the folks who are learning about MTHFR and Lyme, et al, and doing better! You all are fantastic!
- Yes, indeed!
I really think I have this problem. My internal med Dr is checking this out for me.
Posted by manybites (Member # 33750) on :
The doses came and my son started.He had a slight fever hot ears and face blush ( not temperature) and is the pulling of toxins in the frontal lobe.He felt the change right away and he is just in small dosage.He said I feel like pulling feeling in my frontal lobe.
I gave him in empty stomak .I was happy it work right away.
Posted by Tonglen (Member # 18472) on :
Couple of questions,please. What is the name of the test done by Quest or LabCorp? And does high folate level in the blood mean you have MTHFR or don't have it or irrelevant? Thx!
Posted by fflutterby (Member # 28081) on :
My queston again, do we continue all of our Dr. B vitamins also ?
Posted by fflutterby (Member # 28081) on :
Manybites, don't give your son too much at once. It is recommended to cut them up when you start. Look at the directions. I think you are supposed to take them with food.
But I am glad he feels it working. Most people do not respond so quickly. It can take 8 weeks to see improvement. Just like lyme, there can be some discomfort when starting because of the detoxing so go slow.
Tonglen, the levels of folate, B12 in your blood does not reflect how much of it your body is utilizing. This mutation means your body cannot convert those vitamins to their usable form so no matter how much you ingest in food or normal supplements, you remain deficient. That includes B12 shots.
It does not matter where you get the test for the mutation done.
Yes, you continue taking the supplements recommended by Dr. B. The doctor I saw thinks Dr. B is the best. She mentioned Reishi mushroom and also transfer factor but said she would tell me what supplements to take when the test results are all back. I started taking these on my own.
Posted by randibear (Member # 11290) on :
sorry but did i miss something? what's mthfr or something???
Posted by manybites (Member # 33750) on :
Yes I did give him a quarter.will see tonight.
Posted by fflutterby (Member # 28081) on :
Interesting post about HPU above.
"Dr. Klinghardt reportes that in many of his Lyme patients, HPU/KPU treatment will automatically bring up the methylation cycle, but I'm not sure if that's true in all cases of ME/CFS.
If heavy metals levels are sufficiently high, they will also block the methylation cycle, so if present, they may need to be dealt with before treating the methylation cycle, too."
Neff, do you have mercury fillings or high mercury? Have any of you on the protocol been tested for HPU. I have some Core here and maybe I should start this first ?
I do have elevated mercury but have mercury fillings. So I cannot chelate Posted by nefferdun (Member # 20157) on :
I have a mouth full of amalgams but the test I had done in 2010 said my blood levels were within normal.
The doctor said she is doing more tests for mercury etc. She said you cannot tell by the blood alone because it will be in the tissue. She said there is no question the amalgams leach mercury.
Altogether, I had 33 vials of blood drawn so I hope something in there will clarify what is what. I am still supposed to send in saliva and urine.
They would have to put me under to get all these filling out and replaced with composite ones. My son who just started dental school said composite fillings shrink and sometimes large ones will fall out. He said there have been no studies to confirm the safely of composite fillings so if you don't have elevated mercury it is best to just leave the amalgams alone..
Posted by sparkle7 (Member # 10397) on :
springshowers- I think there are alot of people who do this on their own, especially in the CFS community. Rich VanK is a PhD. (not an MD) so I would think that he doesn't want to see people get really ill & blame him. All of this is experimental - so no one knows for sure what each individual will experience.
---
It's a tricky issue with the mercury fillings. I've had composites for a long time & they are fine. They can be toxic, too. I posted a list of materials & they can cause problems in sensitive people. There's a list on the parasite doctor's website (the MD who practices in AZ).
Some people got them removed & had little change in theie health problems. Some people felt better. If you have alot - it may be better to just get one out at a time & let your body detox rather than doing a whole bunch at once.
I still have 2 remaining. It's probably best to get them all out before trying to chelate. I read something on the NDF Plus website & it says you can use their product with fillings if you put the drops way in the back of the throat.
All of this detox takes time. I think it's better to take it slow & don't rush it. It's a process. It took all of these years to get toxic so it can take time to reverse it all.
I guess the best thing to do would be to get the KPU test first & work on that if it's an issue. I don't know if it's a good idea to do both - particularily at the same time. I dowsed it a number of times & for me - I'm going to try the glutathionine methylation protocol first.
Posted by sparkle7 (Member # 10397) on :
Be sure to scroll down to methylation and the immune system.
Posted by txgirl09 (Member # 21612) on :
This is great information. I have 2 copies of this gene.
Posted by lauirel (Member # 16640) on :
Nefferdun, I am so happy to hear your feeling much better!!
Reading through the thread, I just wanted to remind everyone about potassium levels. When the methylation cycle comes up, potassium will fall and can become dangerous. You can read about the potassium issues, at PhoenixRising.com, a CFS/ME forum chock full of info about methylation and the two protocols, including RichVanK's.
Laurie
Posted by jarjar (Member # 8847) on :
Neff,are you still feeling "great" like when you first posted. Keep us up to date on how you are feeling.
Posted by tickssuck (Member # 15388) on :
Yes Neff, wondering how you're feeling? Still "great" I hope. Keep us posted. Sounds like you might be going to see the LLND in Seattle we PM'd about; hope it's helpful for you. TS
Posted by nefferdun (Member # 20157) on :
I am doing about the same. I feel better than I did before quitting the abx but symptoms are sneaking back. In the evenings I have pain in my calves. It is not really bad but worries me. At night I have woken up a couple of times sweating.
I am not on any anti-malarials or abx but I am going to start a round of Coartem tomorrow. I was having mild headaches but they go away without any medication now. Some of this is probably detoxing. My eyes do not seem as dry and irritated.
I emailed the doctor requesting she hurry up our consulatation and she said she would call the lab to try to speed up getting the rest of the test results. After I talk with her, I will know a lot more.
I am not getting the symptoms back of depression, anxiety, extreme lack of motivation, sharp pains, cramps, overwhelming fatigue, dizziness, inability to concentrate etc. But in the past, things seemed to sneak up on me, especially the mental changes, so I don't feel completely safe not having any drugs. My last CD57 in October was 37 - very low and obviously infected.
I am taking a huge amount of supplements - not just the ones for the mutation. I am probably over zealous. The doctor did so many tests she should know exactly what I need to take.
If I did not develop any more symptoms than what I have now, I could get by for a long time and call myself well enough. If my legs quit aching at night and if I developed more stamina and eagerness to do things, I would say I was in remission - cured.
I hope these supplements will help my immune system stay on top of the infections better. In the past I always reached a point of intolerance to abx when the side effects were worse than the lingering infections.
I was forced to quit treating relying on herbs to get me by but I always relapsed - the first couple of years with a new infection I had not been treating. Then last fall it seemed to be the return of borellia and bart that was dormant rather than dead. I fall back into the pits of lyme, sometimes slowly, sometimes quickly.
So my hope is treating this mutation will help me be able to tolerate whatever drugs I need to get myself into remission. It will strengthen my immune system. It will help me detox the years of accumulated garbage that is causing me to decline mentally as well as physically.
And it might even change my life so much that I feel better and more normal than I ever imagined. That would not be such a stretch as I am sleeping better for the most part. I wonder what I have been missing all my life.
What would it have been like to have known about this when I was young so that something as simple as falling asleep could have been easy and natural. I could have taken my children on vacations, celebrated New Years and just lived feeling refreshed and ready for every new day.
It is not just about Lyme disease. It is much more.
My adult kids just started the vitamins. I am anxious to see how they feel in a month or so. As soon as I talk to the doctor I will update this.
Posted by sickofsick (Member # 29258) on :
I have been following this thread and I am so happy you are feeling some improvement. My daughter just got results showing she has one copy of C667T. I printed off article above and will add it to my reading!
Posted by sickofsick (Member # 29258) on :
Nefferdun, Will you or have you had your kids/family tested?
Posted by Tammy N. (Member # 26835) on :
neff - I am so glad you are still feeling better! I think that is HUGE.
Regarding the legs -- try to start some exercising. I think walking would be best, at least 20-30 minutes at a clip (really work at building up to that). I think bringing good circulation into your body will bring you to the next level and will possibly alleviate the leg issues.
Keep on going! You are doing great!
Posted by randibear (Member # 11290) on :
will somebody please tell me what "mtwthf" stands for? is it a brand or what???
Posted by sparkle7 (Member # 10397) on :
re: I wonder what I have been missing all my life.
I can relate to that... I often wonder why we have to go through all of this.
Anyway- trying to be positive. I got all the supplements today & I started the protocol. I guess I'll see where it goes.
The official name of this gene is �methylenetetrahydrofolate reductase (NAD(P)H).�
MTHFR is the gene's official symbol. The MTHFR gene is also known by other names, listed below.
Read more about gene names and symbols on the About page.
What is the normal function of the MTHFR gene?
The MTHFR gene provides instructions for making an enzyme called methylenetetrahydrofolate reductase. This enzyme plays a role in processing amino acids, the building blocks of proteins.
Methylenetetrahydrofolate reductase is important for a chemical reaction involving forms of the B-vitamin folate (also called folic acid or vitamin B9). Specifically, this enzyme converts 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate.
This reaction is required for the multistep process that converts the amino acid homocysteine to another amino acid, methionine. The body uses methionine to make proteins and other important compounds.
Posted by randibear (Member # 11290) on :
thanks. Dumb me. I thought it stood for Monday Tuesday Wednesday Thursday and Friday......lol
Posted by gigimac (Member # 33353) on :
Would it be reasonable to think that a sublingual b12 and folic acid supplement could help a bit even though it's not the complete and specific protocol?
Posted by randibear (Member # 11290) on :
thanks. Dumb me. I thought it stood for Monday Tuesday Wednesday Thursday and Friday......lol
Posted by MichaelTampa (Member # 24868) on :
quote:Originally posted by gigimac: Would it be reasonable to think that a sublingual b12 and folic acid supplement could help a bit even though it's not the complete and specific protocol?
I would think that would provide very very little help for those with the gene problem. If you have limited availability to convert the regular folic acid, then supplementing with more of the regular folic acid doesn't sound like it help too much.
Posted by nefferdun (Member # 20157) on :
I am with you randibear! I won't say how I trained my mind to remember it.
sparkle you are so smart! I am still struggling to figure out what in the heck is going on with this mutation.
Walking is a good idea. I think I should take a walk right now. My fingers have done the walking for way too long.
But before I get off my rear end, I want say I just ordered the parts to finish our stairs. I was afraid to do it. I thought it would overwhelm me trying to figure things out. I couldn't even decide what I wanted. It has been ten years and now we are finally going to have a railing - and newel posts - and balusters - it will be all done - at last!
I have the mental, physical and emotional energy to do this (that is supervise my husband doing it). I finally can remember what part is what. I watched a video and decided it is not really all that hard to do.
By the way I got Perque activated B12 yesterday, which has 33,330 percent of the B12 you need. Nice.
Posted by sparkle7 (Member # 10397) on :
I'm not that smart - I just google things...LOL.
I tried just the folic acid a while ago to see if it would help & it didn't do much. I think you have to do the whole protocol.
Posted by gigimac (Member # 33353) on :
I was hoping maybe there was a cheaper way to just give it a try but maybe I can get the money for the testing one of these days.
Considering how horribly I herx it seems like mthfr mutation could be a problem.
Posted by randibear (Member # 11290) on :
thanks. Dumb me. I thought it stood for Monday Tuesday Wednesday Thursday and Friday......lol
Posted by sparkle7 (Member # 10397) on :
I think it's working for me. It was too much - actually. I must be one of those people who are sensitive. I woke up with a headache & I felt like someone hit me in the back with a 2 X 4... I started with the low dosage, too. I think I'm going to do it every other day & work it up slowly (as per dowsing).
I'll keep you posted...
Posted by Fordace (Member # 14874) on :
Loving this topic.....looks promising
Posted by BuffyFan (Member # 34679) on :
do you think everyone with lyme should get tested for this?
oh, and when I see MTHFR, I think of mother f'er, haha.(if anyone is offended by that, I'll remove it)
Posted by tickssuck (Member # 15388) on :
BuffyFan (funny name),
It would take a lot to shock and offend me. I think your comment is hilarious. Considering I feel like crap, I appreciated the humor, thanks!
Completely unrelated....my friend's young son with LD and company has a port; they also have 3 small dogs, one of which is a Dachshund...her son's "screen name" when he plays computer games is, "Wiener with a Port." Funny!
Sorry moderators, remove this if you have to! TS
Posted by jarjar (Member # 8847) on :
quote:Originally posted by BuffyFan: do you think everyone with lyme should get tested for this?
oh, and when I see MTHFR, I think of mother f'er, haha.(if anyone is offended by that, I'll remove it)
Actually that is appropriate for anything associated with our illness..the MTHFR gene disorder
I started it last night and it did make me sleepy as was mentioned. Had very slight headache but noticed last night and today I had good color in my face. My serine has not come in yet but it is optional so I went ahead and started protocol. Good stable energy today and that's my report.
Posted by TerryK (Member # 8552) on :
Anyone with the CBS upregulation may find that they feel worse either over the long term or right away. That is because you will be making more toxins for your body to deal with as you try to supply your body with the methylation nutrients that some of you are taking.
Yasko talks about this quite a bit as do others. Most doctors who treat the methylation issues as a side issue seem to be missing this piece and don't test for it and don't seem to know about it.
http://www.heartfixer.com/AMRI-Outcomes-Non-CV-Autism-Methyl%20Cycle.htm "The CBS up regulation �pulls down the drain� all methyl cycle intermediates, generating ammonia and sulfur breakdown products. We must control this defect before we aggressively supplement you with methyl cycle intermediates; otherwise the intermediates will �fall down the drain�, aggravating your condition."
I wanted to make those of you who are supplementing for this aware of this potential problem. If you want to know more please go to Yasko's site and read. Even doing a search on the internet should yield some answers. There are lots of posts in the archives with links to yasko and other groups that talk about methylation.
Terry
Posted by sparkle7 (Member # 10397) on :
Thanks Terry!
Posted by sparkle7 (Member # 10397) on :
This thread on another message board discusses the CBS upregulation -
3. The best methylation test (the one we used in our study) is simply called a "methylation panel" from Vitamin Diagnostics Lab in New Jersey. [Now Health Diagnostics and Research Institute, phone 732 721-1234].
It runs about $325 for 11 measures of methylation chemistry, so it would be cheaper to just start the protocol, which is what I advise. I don't typically order the panel unless the patient is not responding to it adequately, so we can figure out what they are missing.
-----
Note - this test is not a genetic test. It tests for levels of various vitamin/nutrient levels in the body to see how methylation is occurring. It's a little different than the Yasko test.
![[Frown]](frown.gif)
I saw 4 different ones over the years.
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
![[lol]](graemlins/lol.gif)
![[group hug]](graemlins/grouphug.gif)