Wednesday, April 11, 2012
Are you wondering whether you should try methylation support, and if so, whose protocol to follow? If so, this blog might help you get a handle on what to avoid and how to go about it systematically.
I started this blog when I decided to try the simplified methylation program designed by Rich Van Konynenberg for people with CFS to let others know if this program ‘worked’. Before that time, I’d spent too much money on doctors and protocols that didn’t work, or that made me substantially worse, or that only seemed to work for a short while and then left me yearning for more. I lacked the optimism that this new ‘miracle’ protocol would turn me around, even though Rich knew more about ME-CFS than any practioner I’d ever met.
I didn’t make fabulous progress on the methylation protocol, and unlike many on the Yahoo support group, I didn’t feel any detox. Yet I did experience one issue repeatedly: whenever I took too much B12, whether as hydroxyB12, glutathionylB12 (made by combining OH B12 with glutathione) or methyl B12, I would always feel like I was getting a cold, usually wouldn’t be able to sleep, and sometimes would feel hyper. Then I’d back off once again and try to build up slowly. It frustrated me that whichever practitioner I was working with would tell me “Take more B12” except for my mainstream PCP who looked at my high serum levels and suggested I didn’t need any. So I tried to educate myself.
I joined Amy Yasko’s forum, tried small amounts of all 3 types of B12 (methyl, adenosyl, hydroxyl), multiple types of folate (5-mthf, folinic, folic acid), and many other supplements. No improvement, no decline. I tried Fred Davis’ protocol (posted as Freddd on Phoenix Rising) of using only methyl B12 and 5-MTHF. Same dismal results with the B12 as before. It was particularly bad if I did exercise when I first got a burst of energy from B12: I was sure to come down with a cold later in the day. Finally, I saw Alan Vinitsky, an innovative doctor who’d patented his ideas about methylation, and decided to learn from a pro. Proof that methylation wasn’t working properly in my body came from my high MCV on standard blood tests. From him, I learned all the things that methylation does and was better able to identify when it wasn’t working properly. His protocol was expensive, as it involved taking large amounts of OH B12 combined with even larger amounts of inactive folic acid, up to 20 tablets a day, but I seemed to tolerate it for the first five months. Then things shifted and I got sicker than ever, with constant colds, sinus infections, and fatigue.
All these stories, as well as the theories underlying the protocols, are discussed in posts from February 2011 and earlier.
On blogs and internet discussion groups, I read of others who were having tremendous detox with methylation support. Some were experiencing huge bursts in energy after a few rocky days. Why not me?
It was around this time that Dr. Vinitsky identified mold as an issue causing my condition and set me on the path of remediating my Ohio house. Six months later, I left it to experience life in the great outdoors where I watched many of my long-term CFS symptoms go into temporary remission. Since then, I’ve been bumbling around with methylation support, unsure which protocol to follow. When I was camping and not going anyplace, I seemed to be able to increase B12 and 5-MTHF week by week. As soon as I started looking at houses in the hope of moving beyond tent camping, I’d get hyper and decide to stop everything, or cut down on B12 until I was taking a tiny piece of a pill. What could be blocking methylation?
A few clues
Those practicing avoidance for a long time say you have to be in a good place to get detox to occur. What I think they mean is that, if the body is involved in a chronic inflammatory reaction, you will not detox. I’m so sensitive that, when I enter buildings, I often get a delayed reaction hours later. Often I don’t smell or feel anything at the time. Sometimes I do. Either way, I find myself hours later feeling edgy, or blue, or hyper, or congested.
Some people can stop these delayed reactions by showering and washing their hair immediately after leaving the place. The key is to get out quickly and clean up quickly. To do this, one has to have some ‘realization’ that the place is, or could be, an immune system trigger. My downfall is that I forget until at 3 am, I’m not sleeping and feeling miserable.
Another clue came from Dr. Ben Lynch, a naturopath with a website devoted to methylation disorders and support. In a discussion of side effects from too much 5-MTHF, Dr. Ben notes: "if one takes methylfolate before inflammation is controlled, the methylfolate will worsen it.” Side effects of too much methylfolate include: pain, insomnia, irritability, skin rash, achy joints, palpitations, and migraines.
He recommends the anti-inflammatory herb, curcumin, to offset inflammation, even though it is a methyl donor. I tried a powerful curcumin preparation while in a chronic inflammatory reaction in my old house, and had bad reactions to it. I can take the same product now without complications. Interesting how removing myself from immune triggers reduces inflammation to a point where I can tolerate additional support.
Yesterday I learned from Dr. Lynch that all forms of 5-MTHF are not created equal. In his post on April 5, http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/, he listed all the names used for methyfolate (there are about 20 of them) and then grouped them into active/effective forms and inactive/ineffective forms. The prescription types are active and effective. The OTC (over the counter) supplements vary. Those that include the Merck-patented Metafolin are fine, but they max out at 800 mcg compared to the 7.5 mg in prescription Deplin. With the others, it’s a gamble.
Oops! I used up my Metafolin-based supplement (Folapro) suspiciously close to the time I started getting unstable, I also turned down a prescription for Deplin because my insurance wouldn’t pay the high cost, and ordered the least expensive methylfolate I could find. What was really in it?
So I read more of Dr. Lynch’s blog where I learn that those supplements listing the L form or the S form of methylfolate are effectivde while those that don’t specify probably include a lot of the ineffective D form and R form of the molecule. The chemistry of how each rotation differs from another is beyond my understanding, but I would love it if someone could explain it and let me post it as a guest blog. In the meantime, I remember that the D or R forms can be stored in the body, especially in the liver, and may inhibit regulatory enzymes related to folate metabolism. The take home message – read labels carefully.
I want to avoid all the dyes and fillers used by the pharmaceutical industry to make Deplin, and so I was glad to learn that Quatrefolic (available through Allergy Research Group at 800 mcg and now through Metabolic Maintenance at 10 mg) is a fine alternative to the prescription drugs. However, the cost is about the same. I check my order history and find that the brands I’ve been using in 2012 are using Metafolin. Guess that wasn’t the problem after all.
Back to Dr. Ben’s site where, in a recent post, How Much Methylfolate should you take?, he recommends titrating methyl B12 in combination with methyl folate in the ratio of the supplement he sells (how convenient!) which is 1000 mcg of methyl B12 combined with 800 mcg of Metafolin. I, on the other hand, bumbled into trying 10,000 mcg of methyl B12 combined with 800 mcg of Metafolin. Oops!! (and then I tried injections of methylB12, probably getting even more. Oops again!)
So now I try again, starting with a safe, low dose, and titrating up. My Quatrefolic arrives tomorrow in the mail.
What about you? Are you trying to get all your folate from food? or are you supplementing?
As a naturopath, I like the idea that fresh whole food can supply all the nutrients we need. After all, the Greek physician Hippocrates said “Let food be your medicine” and the Bible similarly instructs us to partake of healing foods from the fruits and seeds of nature. Yet many of us, despite an organic, whole foods diet rich in leafy greens, do not have sufficient folate in our cells for a number of reasons. For decades, food has been fortified with artificial folic acid, a stable compound that has to be converted by an enzyme in the stomach into a useable form of folate. When the bloodstream has high levels of unmetabolized folic acid, it’s a sign this enzyme isn’t working well (or that we’re taking more folic acid in supplements than the enzyme can handle.) Researchers aren’t quite sure of this, but evidence points to a risk that unmetabolized folic acid has a detrimental effect on folate metabolism. Another reason to read labels and avoid processed foods!
On top of this, many of us have genetic variants that slow down some of the methylation enzymes or cause us to use up B 12 or B5 or methyl groups too quickly. In either case, we may find ourselves needing much larger amounts than we could ever get from food.
Even if you don’t have ME-CFS or another neuro-endocrine illness, be advised that methylation is now believed to be a key factor in preventing heart disease and cancer. It’s an important factor in endometriosis, a healthy pregnancy, and many female syndromes that involve estrogen imbalances as well as mental disorders like schizophrenia, anxiety disorder, and depression.
This doesn’t make methylation support a panacea for everything that ails you, but since methylation is a process that all cells in the body use to move CH2 radicals from one molecule to another, which supports over 40 different processes in the body ranging from the management of stress hormones, to immune reactions, to estrogen metabolism, to antioxidant control, a glitch in one place is bound to create a jam in another.
Metametrix now offers a test (@ $150) for unmetabolized folic acid compared to serum methylfolate. Vitamin Diagnostics Lab , now Health Diagnostics and Research Lab, offers a methylation panel for @ $300 which looks at all the steps in the cycle, including SAMe and SAH, reduced and oxidized glutathione. In addition, your doctor can run serum folic acid through Labcorp or Quest to see if your levels are high or in the normal range. But the new rage today is testing your methylation genetics and supplementing according to what you find. The site 23andme.com offers extensive genetics testing for a very good price and their panel includes the important C677 and A1298 variants that could guide how you approach methylation supplementation. When you get your results, go to Ben Lynch’s site and find out how to balance your genetics. Or, if you’re capable of absorbing tons of information, visit the Yasko forum and dig in.
Sunday, April 1, 2012
What could be better than a view of the ocean?
I love views. Ocean views, mountain views, panoramic views over hillsides and farms. I grew up with a mother who willingly paid more for a room with a great view, and who got my father to buy property in
West Virginia because it had an amazing 360 degree view of mountains and valleys. So when I found a rental on VRBO with an ocean view from the hillside about Kailua, I took it. After I’d paid the nonrefundable security deposit, I realized that there was little outdoor living space. What if the place were moldy? (the owner had assured me it was definitely not¸ but I’ve learned not to trust owners.) What if it rained? (It did, first rain after a long drought.) A few other ‘what if’s ran through my head, but we needed a place to sleep and cook meals, and we didn’t want to spend two hundred a night for a hotel. So with a bit of trepidation and a lot of optimism, off we went.
I immediately loved Kailua-Kona and the energy of the
. Lots of lava and dry grasses, lots of tropical plants. It was warm and sunny, which was just what my spirit needed to heal. Our host-owner handed us papaya and oranges from his trees and made us feel welcome and comfortable. The kitchen was stocked with all kinds of useful utensils; the closet had boogie boards and coolers and beach bags, the place seemed to be mold free and immaculately clean. Best of all, it had a beautiful view of the ocean. We watched the sun set while eating dinner on the patio. My roommate went into the hot tub. I curled up under a blanket on the sofa, gagged on the laundry-detergent scent of the sheets, got out my sleeping bag and fell into a sweet sleep. Big Island
At 2 am I woke with racing heart and terrible cramps in my calf. I remembered Shoemaker saying that calf cramping can be a sign of elevated C4a, one of the early markers of a reaction to mold. I got up, set up my sleeping mat outside on the deck, and moved myself to the Great Outdoors. I didn’t sleep a wink the rest of the night.
The next day I surprised myself by having decent energy, enough to go swimming, walk around some shops in downtown
Kailua, meet up with some friends for fresh Kava and dinner. I slept outside and woke up the next day with a cold and sinus infection. Ugh! I was wiped out for 2 days, then congested, cold and tired for the last 2 days. It didn’t help that the weather turned gray and rainy 2 days in a row.
But in driving up the coast to check out some camping areas, I found places where my head cleared. I felt particularly good in the south Kohala coastal area. As soon as we turned around the NW corner of the island, coming into Kaha’au and Hawi, I got congested again. Taking the highway back through Waimea to
Kailua, I felt great on the stretch due E of that dry area and decided I’d look for housing in that area if I ended up staying on the island. I continued to sleep outside and work outside, despite periods of rain, because I felt jittery inside the house.We learned the last day that the owner had a pesticide company come monthly to spray the perimeter and set pesticide pellets in the garden right next to my sleeping area and I wondered how much pesticides could have been triggering me rather than mold..
I had some trepidation as we left to drive to our new place on the wet side of the island. I knew it was a beautiful house, and the woman renting it to me is an energy healer I've known through phone and Facebook contact for 5 years. Surely the place would have good energy, and would be okay because it was right on the beach and fairly new and built over an area of lava flow from 1990 in which nothing grew. The house turned out to fulfill its promise of being spacious, open, and sparsely but tastefully furnished. I didn’t smell mold, see any inside mold, or any signs of water damage. I did noticed lots of mold discoloring the cement walkway and the wooden porch in the back of the house and decided that since it was outside, it probably wouldn’t make a difference. WRONG
For me, outdoor mold does make a difference. Some of the comments to my post ‘
Hawaii on trial’ dealt with whether outdoor mold is toxic or not, and whether moisture alone is enough to cause an existing sinus problem to worsen or not. One commenter wrote: “it seems like the possibilities suggested so far are a) that there are toxic molds growing outdoors that are triggering immediate sensitivity reactions upon exposure (as I believe happens as a result of exposure to trichothocene producing Fusarium in farmlands in the Midwest); b) the humidity in the air is causing a sinus infection already present to flare; or c) mold spores in the outdoor air in some places are lodging themselves in the sinuses and causing a new infection. It would be interesting to know which of these was happening for Janis, in the different places that she is visiting. I wonder how we could figure it out.”
Not expecting to figure it out myself, I went to Dr. Dennis’site, since he’s the one who taught me about fungal sinusitis and inspired me to get a CT-scan. Here’s what he wrote:
“The real culprit: Mold, that is present in your everyday environment. In 1999, The Mayo Clinic proved that the cause of 93% of all chronic sinusitis is an immune reaction to fungus (mold). When fungi enter your sinuses they cause your immune system to react. Your body generates antibodies to fight the invasion. That battle leaves your sinus lining (the mucosa) pockmarked with microscopic pits that become the breeding ground for bacterial infections. It is only a matter of time before all the symptoms you hate hit you full force. It is also why antibiotics clear the infection only to have it returns weeks later.”What follows are suggestions for nasal washing four times a day, mold remediation, anti-fungal house treatments, and similar interventions to control the total load of mold..
Dr. Dennis continues:
“It really is that simple. Control the antigen and you control your Chronic Sinusitis. Remember the body is like a bucket. The moldy air you breathe in fills it and the body protocol empties it. High air mold counts keep your bucket full and you sick, because you are constantly breathing in the antigen while only periodically emptying it with your nasal wash. That is why you must do both the body and the environmental protocols to keep the disease under control.”
I certainly agree with parts of this – mold in the air I breathe definitely impacts me. I have circulating mycotoxins, and probably will continue to have them as long as the fungal foci in my sinuses keep producing toxins. I don't think it could just be moisture, as doing the neti pot helps.
I think Dr. Dennis errs in encouraging people to stay in their houses and try to make them mold free. The friend who went to see him (and told me about it) was told something else in person: “Get thee to the desert, to a high elevation, or to the beach—right on the beach, not a block away, and thou wilt be healed.” Her husband has to stay in a certain metropolitan area that has none of those climates, so with her Dr.’s support, she’s building a house without any woods or forests nearby to keep the mold counts down, and following his protocol in other ways. Another friend of mine built a house on steel piers and did much better once she moved into it.
Controlling the antigen has not been simple for me (as Dr. Dennis makes it sound). I couldn’t seem to do enough in the moldy environment. Too many sick people try to live in their remediated houses, only to fight a useless battle against the mold toxins and bacterial toxins from a water-damaged building (WDB) that are imbedded in parts of the house which were never touched by actively growing mold. This stuff gets absorbed from moldy air also and some of us react to it. I chose to leave my house rather than spent $100K or more replacing all the drywall and framing and basement concrete blocks. I don’t regret it even though it’s been tough. The gains I made were rapid and rewarding.
But these get easily reversed when I get a mold hit, not only because sinusitis flares out, but also because of the general immune inflammation that starts up. This is the process Shoemaker has researched and understood. It is sad that more doctors, such as Dr. Dennis, don’t realize the significance of Shoemaker’s work for a subset of patients—those of us with ME/CFS, EI, chronic Lyme, and related neuro-endocrine-immune disease. The immune reaction is a cytokine storm that sets into motion a cascade of reactions which can take from several hours to several days to play themselves out. Something goes right into the brain (perhaps pieces of fungal DNA, beta-glucans, and/or bacteria and mVOCs) all of which trigger neurological, endocrine, and immune symptoms way more annoying and disabling than a sinus headache or stuffy nose.
I got to reexperience this pretty quickly in the
house. Kaimu Beach
After bringing in our suitcases, we went out to a wonderful meeting that evening with our host and made more new friends at the gathering, getting healing energy and giving it, feeling incredibly connected, peaceful, and hopeful. When I had my hands on my partner and felt the energy flowing, I knew I had to get back to doing energy healing. It was a fabulous feeling of having come home to my path. And frankly, it surprised me as I’d started to write art history articles for conference publications (even though I couldn’t accept the offers to travel and speak at those conferences, and felt pretty sure I’d be going back to that work as my brain cleared.)
Back at our new house, I was too energized to sleep. I sat out on the lanai working late. When I finally crawled into my bed, I tossed and turned as my heart raced and my head swirled. Finally, at some wee morning hour, I got out my camping equipment and set up inside on the living room floor as the outside air was terribly damp. The floor boards felt coated with water. Inside I ended up closing all the windows to keep out the damp, but even with a double dose of Xanax, I got only 1 ½ hours of sleep before really bad calf cramps and a heart knocking on my chest wall like a caged prisoner awakened me. I could barely stand and walk due to the sudden return of orthostatic intolerance. And my sinuses hurt, my nose dripped, I coughed and all those messy yucky things. I spent the day feeling like a zombie with racing heart and poisoned brain as we packed, drove back over the mountain, and found another place to rent in the S. Kohala area.
On the way over, we tested the theory I learned from Lisa and Erik that going up to high elevations can help to clear your car and your stuff of mold toxins. The road up to the visitor’s center on
Mauna Kea takes one to 9000 feet. It was cool and sunny, and we hung out for about an hour feeling better by the minute. I haven’t had any problems in the car since, which admittedly doesn’t prove anything. I did feel my racing heart calm down as I rested up there.
I slept like a baby the first night in our new place (9 hours straight). I could tell I was in a really good place as the 2nd day unfolded. Despite my near total exhaustion, I could feel myself relaxing deeply, and my mood brightening. I gave up the idea of taking a flight back to California that evening, and even began to consider staying here long term. I did yoga nidra, qigong, and stuck acupnncture needles in a few points. By evening, I felt something shift inside. It was a nice feeling of settling in, the quiet after a raging storm. This is better than a view, I found myself thinking as I looked out over the golf course knowing that around the bend, others can see
Mauna Kea or the ocean from their terraces.
When my brain was working again, I remembered that my sleeping stuff needed to be decontaminated. I washed the sleeping bag and pillow case, but that wasn’t enough to stop the raging sinus headaches I woke with every morning. Apparently, all that stuff, which was in the trunk of the car rolled up in stuff sacks, was not fully accessible to the elevation effect in the course of a mere hour. Next time I go up Mauna Kea I’ll take everything out and plan on staying for a longer time period.
In the meantime, I slept in a bed last night. Yes! I SLEPT in a real bed. And what a pleasure it was…. zzzzzzzzzz. Looking forward to repeating the experience….zzzzz.
Today, my 4th in the new place, I feel my strength returning as my sinuses clear up and my body recovers from the cytokine storm. For the first time in a week, I felt like taking a walk on the beach, did a little water aerobics in the ocean too. An hour later, I had to walk a lot because I forgot important things in my car, and I got worn out. It wasn’t nearly as much walking as I’d done at my best in the desert, but was more than I’d done since I arrived in
Added the next day
It is my 5th night here, and my 2nd in a bed, and I am not sleeping much at all. I don’t know if it was because I went to a new place to take a sauna, got overtired having to walk too far, or because I took a dose of ADH (desmopressin) before bedtime. I’m leaning towards the ADH as I didn’t feel the same symptoms I usually get from a mold hit.
Desmopressin is used by Shoemaker as step 8 in his 13 steptreatment plan. I was doing fine on it in the past, when I’d managed to go without a cytokine storm for a long time. I clearly reintroduced it too quickly. Shoemaker repeatedly says in Surviving Mold that, after a new exposure, one has to go back to the earlier steps and introduce them systematically all over again. Oops!
It’s also possible that the Hilton spa has a hidden mold problem. I know they have to work to control mold in the steam room because I asked them about it and learned that they clean it every 2 days. Maybe the amount that builds up every two days is enough to ruin the entire space for hypersensitive persons like me. I’ll test these two hypothesis over the next week by a process of elimination, stabilization, and reintroduction of one variable at a time.
In the meantime, I realize I have to be more careful. I don’t like living a limited life, but for the time being, staying at my new home, going to the store, the beach, and some outdoor parks is going to be my life. I have the enthusiasm and desire to do more, but my reality is still couched in hyper-reactivity.
Are there medical interventions that could make hypersensitivity lessen? Various doctors have their theories and clinical experience. Rea focuses on detox through sauna and oxygen, nutritional support, and provocation neutralization testing and shots. He has patients block reactions in progress with serotonin and/or histamine shots. Hope focuses on raising CNS glutathione through nebulizing and liposomal supplementation as well as CSM to lower mycotoxin load and other binders (charcoal, bentonite, zeolite) to pull out different groups of toxins. Vinitsky focuses on supporting methylation with his 5:2 ratio of folic acid to hydroxyl B12.
My plan is to get into Dr. Hope’s protocol living a quiet, isolated life until I get stable, then introduce sauna (whether the Hilton or through purchasing my own) and finally moving forward through the steps of Shoemaker’s program and increased methylation support, but with 5-MTHF rather than folic acid. I tend to introduce too many variable too quickly in my enthusiasm and impatience, and need to slow things down. This is a healing journey, not a triathalon. I need to enjoy the process without rushing towards the goal or I end up as the hare losing the race with the plodding turtle.
Fortunately, I feel good enough about this place to have a surprising inner certainty that it’s going to work out for quite a while, and that brings me a feeling of tranquility. Ironically, the desperation I had from the
place brought me here, while my roommate, whose brain was functioning, found the place online. In a calmer state I would have eliminated it because it sits on a golf course, near a road with traffic, and is carpeted throughout. According to the advice of Shoemaker, Rea, Hope, and Nagy (a doctor I haven’t seen but who healed with the help of Rea from CIRS with extreme fatigue and hypersensitivity) carpets hold mold toxins, golf courses are laden with pesticides that interfere with neuro receptors, traffic adds an unhealthy level of solvents into the air. Yet even though the place is not ideal, I’m experiencing daily improvements, which tells me that it’s good enough for now. Kaimu Beach
No environment is perfect. Our world is toxic, with air and water currents carrying chemicals and metals far from the places they were dumped. I do the best I can, and listen to the wisdom of my body so that, if I’m sleeping, relaxed, and have the desire to be active again, good things are happening inside.
house. Double thanks to your wonderful, compassionate and kind host, a facebook friend I’m glad to have met in person after many years of phone contact. May your desire to spread healing energy help many others in whatever manner spirit brings to each of our destinies. Kaimu Beach