Monday, April 28, 2014

Movie Monday 4/28

My family has been totally wrapped up in TV series lately, so we haven't watched any movies in weeks. But Saturday night, with my husband out of town and my son occupied with two friends sleeping over, I finally had time for a movie! I browsed through the free choices on Amazon Prime and found a good one:

I watched The Giant Mechanical Man, a romantic comedy. I know the name sounds silly, but it was actually a very good movie! Chris Messina stars as Tim, the title character, one of those guys who paints himself silver and stands on the street pretending to be a robot (something that fascinated my kids on their first visit to New Orleans!). He's going through some tough times when his girlfriend leaves him and he begins to question his unique art form. The other main character is Janice, played by Jenna Fischer of The Office fame, who is similarly at a low point in her life. She was fired from her mediocre job as a temp employee and forced to move in with her pushy little sister (played by Malin Akerman from The Trophy Wife). Her sister wants to fix her up with a self-help guru who thinks a little too much of himself, played hilariously by Topher Grace from That 70's Show (I didn't recognize him at first with the long, hippie hair). Janice and Tim meet when they both get demeaning jobs at the local zoo, and Janice has seen Tim on the streets as the Mechanical Man, though she doesn't realize it's him. I really enjoyed this movie from start to finish. It is warm and funny and has more depth than the typical rom-com.

Have you seen any good movies lately? I may need another suggestion for weeknights this week until my husband gets home!

Thursday, April 17, 2014

Vitamin B12 and ME/CFS

Last week, I wrote a post about methylation and its importance to people who have ME/CFS (and other immune disorders as well). If you haven’t read that post yet, I highly recommend you go back and read that one first because these two topics are inextricably intertwined. If you want even more detail than what I am providing here, ProHealth has an excellent article on B12 and Methylation that includes 225 scientific references!

So, with that basic knowledge of methylation, we already know that vitamin B12 is absolutely essential. It feeds a critical step in the methylation process, and without it, the whole process breaks down. That’s only the tip of the iceberg for B12 and ME/CFS, though.

Why is B12 so important to ME/CFS patients and what does it do?

We know that B12 is a critical component of the methylation cycle, which regulates detoxification, as well as critical processes in adrenal function, immune function, and the nervous system. Here are other facts about vitamin B12 and ME/CFS:

  • Many people with ME/CFS and FM are actually deficient in B12

    • Many people in the general population are deficient, including 78% of seniors in one study.
    • People with ME/CFS often have low stomach acid and high bacterial growth in small intestine – both of which lead to B12 deficiency.
    • Blood tests for B12 miss deficiencies 50% of the time (so if your blood tests show you have adequate B12 that is not necessarily true).
    • B12 deficiency can cause IBS (Irritable Bowel Syndrome) symptoms that are very common in ME/CFS; IBS can lead to a B12 deficiency since nutrients are poorly absorbed – this is another of those vicious cycles present in ME/CFS.
  • B12 helps regulate Natural Killer cells, a critical component of the immune system.

  • In multiple studies, people with ME/CFS have been shown to have elevated levels of homocysteine, which can lead to cardiac problems; B12 helps to convert homocysteine to methionine.

  • People with ME/CFS have been shown to have excess amounts of nitric oxide (NO) and peroxynitrite (-ONOO), a potent oxidant. Both of these lead to problems in multiple body systems that get progressively worse, as the high levels of NO and –ONOO in turn produce more of these compounds. NO also disrupts the methylation cycle. One form of B12, hydroxycobalamin, is a potent NO scavenger that can break this harmful cycle.

This was all news to me! Many years ago, when I first heard of doctors giving ME/CFS patients B12 shots, I thought it was an insignificant treatment, something done when doctors didn’t know what else to do because there was a myth that B12 improved energy. Wow, was I wrong!

What is Vitamin B12?
B12 consists of 4 different but related –cobalamin molecules (so named because they contain cobalt):

  • Hydroxycobalamin
    • Scavenges excess NO
    • Especially critical for neurological disorders and people with high levels of cyanide (smokers and those with certain metabolic defects)
  • Methylcobalamin
    • Considered by many experts to be the most active form of B12
    • Used directly in the methylation cycle
    • Protects neurons against glutamate toxicity
    • Promotes nerve cell regeneration
    • Only form of B12 that helps in regulating circadian rhythms (sleep/wake cycle)
    • Because it is directly used in the methylation cycle, it helps support production of serotonin, dopamine, and melatonin, which are directly responsible for good quality sleep.
  • Adenosylcobalamin (dibencozide) –
    • Another highly active form of B12
    • Essential for energy metabolism
    • Required for certain neurological processes
  • Cyanocobalamin –
    • Synthetic form of B12 not found in nature
    • The most common form found in nutritional supplements
    • Must be converted in the liver to other forms
    • Lowest activity level of all forms of B12
    • It is, however, essential in working together with hydroxycobalamin to quench NO


The U.S. Institute of Medicine recommends that all adults over 50 use B12 supplements, so given everything listed above, it seems that every ME/CFS patient could benefit from B12 supplementation. What are the best ways to get it?

  • Meat, eggs, fish, and shellfish contain the highest amounts of B12 in food but only about 50% of it is absorbed by the body (in a healthy GI tract) – IBS and other common GI symptoms in ME/CFS hamper absorption even further. Vegetarian sources of B12, like algae, are not bioavailable. So, supplementation is necessary.
  • Most top ME/CFS doctors (Lapp, Cheney, Levine, DeMeirleir, others) routinely use B12 for their patients
  • A study conducted by Dr. Charles Lapp (a renowned ME/CFS expert) found improved energy levels with B12 supplementation of 2500 – 5000 mcg every 2-3 days, even in ME/CFS patients who did not test deficient in B12.
  • Though injections are the gold standard and are most easily absorbed by the body, there are some newer studies showing sublingual (under the tongue) types of B12 supplements to be as effective as injections. These come in tablets or sprays. We have still found injections to be most effective.
  • Most direct benefits come from the hydroxycobalamin and methylcobalamin forms of B12, but the other two forms support and help these to work better, so all 4 forms can be helpful in ME/CFS.
  • Studies show it can take 3-6 weeks or more to fully see the benefits of B12 supplementation.

 From what I have heard and seen myself, many doctors still feel that injections are the best way to get B12 into the body where it can be used effectively; others use sublingual or oral B12. 

Our Experiences

My son has been getting weekly hydroxycobalamin injections (1000 mcg) for several years now. We did not see an immediate effect, probably because his methylation process was so severely dysfunctional, and his system was overwhelmed by his three tick-borne infections when he started. Slowly, over time, as we addressed his methylation issues (see methylation post) and treated his infections, we saw that the B12 was having a positive effect. He feels a lot better, and we know the B12 is part of the reason why.  He also uses Black Bear Spray (a mouth spray form of B12) several times a day and finds that using it before or during a class, homework session, or a test helps to improve his mental energy and cognitive function.

He recently increased to 2 injections a week, and wow! He felt a huge burst of energy and improved cognitive function with that second weekly B12 shot. The effect was so positive that he now drives home from college twice a week to get a shot. Our next step – recently decided with the biochemist/dietician we consult with – is to switch him to daily shots that come pre-loaded so that he can do them himself at school, with hydroxycobalamin every day and methylcobalamin every third day.

As for me, last summer, I started using a product called B12 Extreme from ProHealth. I bought the product after reading that article they featured on B12 and ME/CFS because it is one of the few B12 products that contain all four types of B12. They are sublingual tablets, and, at first, I felt a mild improvement in energy when I took one each morning. I still take them every day, though I don’t notice that same burst of energy anymore, and blood tests done in December showed that I still had fairly low levels of B12. The biochemist/dietician we work with is reviewing my genetic test results to see if I have any problems metabolizing various forms of B12 and will make her recommendations based on that. I suspect injections may be in my future, too.

In summary, B12 seems to be essential to many body processes, and B12 supplementation should benefit anyone with ME/CFS. Just remember, though, that B12 is just one piece of a very complicated puzzle. If, like my son at first, you don’t see any benefits after a month or two of B12 supplementation, then you probably need to address other pieces of that puzzle, like other parts of the methylation cycle or treating underlying infections (if none of the typical ME/CFS treatments seem to work for you, then you almost certainly have underlying infections that need to be diagnosed and treated before you can move forward).

I will keep you up-to-date on my own B12 experiences, and I would love to hear about yours as well. Has B12 helped you? At what doses and in what forms? This seems to be a simple, inexpensive treatment that can help anyone with ME/CFS.
UPDATE 1/10/17:
My son did very well with the switch to alternating hydroxy- and methyl- type B12 injections and continues to use them. He injects every other day, alternating types, and can tell when he misses one! He is 23 now and injects himself (and told me it was much better doing it himself than having weenie mom do it!)

My son also told me to stop being a baby and switch to injections! I did and now use the same injection schedule that he does - every other day alternating hydroxy- and methyl- types. I can tell they are much more effective than the sublingual tablets I used to use - like my son, I feel the positive effects immediately. You have to purchase injections from a compounding pharmacy - any doctor can write a prescription. Our dietician calculated dosage for us - we both take the same amount (he is about 150 pounds and I am about 130). We take 3.5 mg in each dose, but we request a highly concentrated solution - 25 mg/ml - so that each injection is tiny, just 0.14 ml. I have heard different recommendations for both subcutaneous (just under the skin) and intramuscular (into the muscle, using a longer needle) type injections. We have always used subcutaneous, on the advice of our dietician, which are tiny needles that you barely even feel, injected into our stomachs, and as I said, they are very effective for us.

ADDENDUM 8/25/15: Our dietician recently advised us that people with ME/CFS should NOT take only cyanocobalamin. The cyano- means it contains cyanide which must be detoxed and coverted to other forms before you can use the B12. The detox pathway is part of the methylation process and uses up LOTS of glutathione which is already in short supply for us - so it does more harm than good if you take too much of it. Cyanocobalamin is, however, a part of the methylation process and can be taken as a small part of a product with multiple types of B12. This is especially important to know because as a manufactured form of B12, it is very common in typical B12 supplements and is the only ingredient in a new B12 prescription pill marketed under the brand name Eligen. It's best to avoid cyanocobalamin (or only use it in small amounts, combined with other types) and stick to one of the other 3 types, especially early on in the process of improving methylation.

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

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Wednesday, April 16, 2014

Imunovir and Inosine for Treating ME/CFS


(Newly Updated as of June 20, 2024)

2014: I have been struggling a bit lately because of a shortage of Imunovir, the prescription brand name for inosine, an immune-modulating medication that helps me quite a bit, so I thought I'd give a brief update here, as we switch from the prescription Imunovir (sold in Europe and Canada) to inosine, a generic compound similar to Imunovir, which is sold (far more cheaply) as a supplement in the U.S. and elsewhere around the world.

I looked back at my last post on Imunovir, where I described my experiences with it and how much it has helped me - I was surprised to see that I wrote that over two years ago! So, I am overdue for an update anyway.

NOTE: As explained in that earlier post, Imunovir is the prescription version of inosine, available in Europe and Canada. For a while, we bought ours from a Canadian pharmacy. We switched to generic inosine supplements, sold over-the-counter in the U.S. and many other places, and saw no difference in performance, though the supplement is much cheaper!

While on Imunovir/inosine I have more good days, fewer bad days, fewer virally-induced crashes (caused by exposure to viruses, especially in winter), reduced allergy symptoms, and fewer immune-related symptoms (like sore throat and flu-like aches).

The quick version is that I am still doing well on Imunovir/inosine - in all the ways and for all the reasons I explained in that earlier post. There is no question that while on Imunovir/inosine I have more good days, fewer bad days, fewer virally-induced crashes (caused by exposure to viruses, especially in winter), reduced allergy symptoms, and fewer immune-related symptoms (like sore throat and flu-like aches).

Inosine is classified as both an immune modulator and an antiviral, and inosine is being used in  studies with Parkinson's, MS, and ALS patients. Imunovir has also been used in NIH studies on cancer patients, to mitigate the immune effects of chemotherapy. The reason inosine works so well for ME/CFS is that it is an immune modulator. The specific kind of immune dysfunction in ME/CFS is a mixed bag: our immune systems are partly over-active and partly under-active. So, there are treatments (mostly steroids, which suppress the immune system) available for autoimmune disease, where the immune system is entirely over-active, and there are treatments (immune boosters) available for immune deficiency diseases, like AIIDS. But ME/CFS is in the middle - elements of both but not entirely one or the other, which means that none of those treatments works well for us. An immune modulator, like inosine, doesn't either suppress or boost the immune system but helps to normalize and balance it...which is just what we need. Other treatments we've tried that act as immune modulators and help to normalize the immune system include low-dose naltrexone and glutathione injections or nasal spray.

At one point back in 2013, I thought inosine wasn't working as well for me anymore, and then I remembered the advice about constantly varying the dose. I was pretty much sticking with 4 pills a day 5 days a week, weekends off, because I was afraid to go without it. I decided to try a dosing schedule closer to what ME/CFS expert Dr. Cheney recommends (though specific to my own needs). So, we began taking two pills a day for a week, then four pills a day for a week, with weekends off, alternating weeks with two and four pills a day. In addition, every 2-3 months, we take two weeks off completely. Like magic, this worked! He is absolutely right - when you vary the dose and take breaks occasionally, it works better. I had been afraid to take even a week off since it helps me feel so much better, but I have found that I still feel good for those two weeks off...and great when I start back on it!

Now, in 2019, we still take two pills a day (one at breakfast and one at lunch for my son and after my afternoon nap for me) on low-dose weeks, and we are now up to 5 pills a day (3 at breakfast and 2 at lunch/after my nap) on high dose weeks. We discovered that inosine is very stimulating, so we try to always take all of the pills before 3-4 pm so it won't disrupt our sleep. And every 3 months or so, we skip inosine entirely for two weeks.

When Imunovir (a prescription not available in the U.S.) was temporarily unavailable in 2014, we switched to generic inosine, sold as a supplement, and saw no difference at all. There is only one manufacturer of Imunovir in the world - Newport Pharmaceuticals in Ireland - so availability was often an issue, plus we had to pay to ship it from Canada (with a special permission form signed by our doctor, explaining that it is unavailable in the U.S.).

My son and I switched to generic inosine when I first wrote this post in 2014, available as a supplement in the U.S., and we found absolutely no difference from the Imunovir. So, we have remained on inosine since it works the same and is much cheaper this way (and with no international shipping fees either). We have continued using the dosing schedule I describe in this post, which works very well for us. We started with just 1 pill a day for 5 days (always take weekends off) and stuck with just 1-2 pills a day for the first few weeks. Note that you may have to start out very low with the dosing until you get used to it and you may see an increase in immune-related symptoms in the first weeks (if so, start even lower, with a 1/2 pill). You MUST keep changing the dose around to keep it effective - this is true for all immune modulators.

Any brand of inosine seems to work similarly - just make sure you get 500 mg inosine, with nothing else added. Our favorite brand of inosine is Source Naturals, a brand that our dietician recommends because it is known for high-quality and purity that is also inexpensive (available at the link). Plus, the coated caplets are smaller than most capsules, so we can fit them in our medicine boxes! Occasionally, this brand of inosine gets back-ordered and is not available anywhere. When that happens, we go back to our usual source for supplements, Amazon, and look for another brand. This brand is currently available there. Sometimes, there is none to be found! I think more people have been using it since the pandemic began. When we can't find it anywhere, that's when we take our 2-4 week break, and it is usually available again by the time we need it. And when our favorite brand is available, we stock up!

Because ME/CFS is, at its heart, an immune disorder, treating immune dysfunction can improve all of your symptoms. That's certainly been the case for us, with excellent results and significant improvement from inosine, as well as low-dose naltrexone and glutathione. And these are all very inexpensive treatments! Definitely worth a try.

I would love to hear about your experiences with inosine or Imunovir in the comments below.

UPDATE as of March 2022: 

I went into an unexplained relapse of my ME/CFS starting in March 2020 that lasted for 22 months. I tried a lot of new/increased treatments during that time that all helped me gradually improve, but the last thing I did, in late Fall 2021, was to increase my "high-dose" weeks of inosine from 5 pills a day to 6 pills a day. This wasn't really brilliance on my part, but a mistake one week when I miscounted the pills and put 6 a day into my reminder boxes! It turned out to be a happy mistake, and that last change finally got me back to my "normal" baseline in December 2021. Just last month, in February 2022, I took my usual 2-week break from inosine (I do that about every 3-4 months). I restarted it, as usual, with my low dose of just 2 pills a day. The following week, I jumped right back up to 6 pills a day ... and it was too much for me! I experienced increased immune symptoms (mainly terrible flu-like aches all week). After my weekend break and then going into my next low-dose week, I felt better. This week, a high-dose week, I am taking just 4 pills a day and doing well. So, I have learned that after a break, I need to gradually build up my "high" dose again, just as I did in the beginning (it took many years for me to get my high dose from 2 pills a day to 6 pills a day). Just another tip learned from hard experience - always learning with this crazy disease!

UPDATE as of June 2023:

Last fall, I again went into a bad relapse, this time triggered by a change in hormone levels (suddenly stopping birth control pills that I had taken for decades to keep hormone levels steady). That one change led to my worst month since the start of my illness, crashed and unable to function 78% of the time! The change in medication led to a cascade of hormonal/endocrine issues, including worsened thyroid dysfunction. I once again had constant flu-like aches, indicating that my immune system was overactive. I noticed that I felt better during my usual 2-week break from inosine and worse after attempting to restart it. So, in addition to treating the hormone issues directly, I also stopped taking inosine in November 2022. As of June 2023, I am still not taking it and feeling quite good, able to function and be active without crashing (though I am still struggling to normalize thyroid function). This just shows you the complexities of how the immune system works and how inosine can help. In early 2022, taking more inosine helped me, and in late 2022, stopping inosine also helped me. it's important to listen to your body and pay careful attention to the effect that each treatment has.

UPDATE as of June 2024:

One of my big issues the past few years has been yeast overgrowth, and I finally got it under control this year, thanks to a very strict diet (almost no carbs), on top of all the other anti-yeast treatments I take. I realized last week that if I "cheat" on the diet in any way--even just a few strawberries or a piece of fried chicken--the thrush is back on my tongue, and I feel worse again. Since yeast is an issue in ME/CFS due to immune dysfunction, I remembered that I've been off inosine for a year and a half. Since it helps to normalize immune function, I restarted inosine last week, and as before, it's helping! My energy is better, and I'm hoping as I increase the dose, it will help with yeast overgrowth so I don't have to be quite so strict with diet (though I'll still need to stick to it most of the time). Note that I took a half caplet each weekday last week, and a full caplet each weekday this week. I'll slowly, gradually get back to a higher dose (on my high dose weeks). That's the way it is with inosine and other immune modulators: if it's not helping any more, increase the dose or take a break.

Note: This post contains affiliate links. Purchases from these links provide a small commission to me, to help offset the time I spend writing for this blog, at no extra cost to you.

Friday, April 11, 2014

The Methylation Cycle: Central to ME/CFS

I sat down to write a post about vitamin B12 supplements for people with ME/CFS and how much they have helped my son and I. I soon realized, however, that I couldn’t explain the importance of B12 without first explaining what the methylation cycle is and why it is so critical to those of us with ME/CFS (and similar illnesses). I’m no expert, but here is what I have learned:

What Does Methylation Do?
I already knew in a vague way that methylation was an important process in the body, but now I understand it is absolutely critical to multiple bodily systems. Before delving into exactly what methylation is, let’s look at its role in the body. Here are some of the vital functions of the methylation process:
  • Critical to the manufacture of DNA and RNA, the body’s basic genetic material;
  • Essential for several important neurological processes;
  • Required for the manufacture of adrenal hormones, which affect all sorts of bodily functions, including sleep, energy, temperature regulation, and neurological functions;
  • Responsible for several detoxification pathways, allowing your body to get rid of toxins, including excess medications, supplements, dead viruses or bacteria, as well as environmental toxins. 
Almost everyone with ME/CFS (and many people with other similar illnesses) has a dysfunctional methylation process. It’s hard to tease out cause and effect because every one of our dysfunctional systems (immune, endocrine, nervous, etc.) causes further dysfunction in other systems. Put simply, ME/CFS is a very complex knot of vicious cycles where each problem worsens all the other problems. So, it is likely that the longer you have been sick, the worse off your methylation cycle is.

In addition, the more health problems you have, the worse the methylation process gets (more vicious cycles), so someone like my son who has ME/CFS and also Lyme disease plus two other tick infections just keeps getting worse and worse – which is what we saw with him a few years ago and again this past year. Same goes for anyone with any kind of underlying infections behind their ME/CFS (which is probably most of us).  

What Happens When Methylation Isn’t Working Properly?
So, if people with ME/CFS have messed up methylation cycles, what exactly does that mean? When the methylation process isn’t working properly, the following problems result:
  • Detoxification doesn’t work well (as explained above) so toxins build up in your body;
  • Less serotonin, dopamine, and melatonin (all directly linked to sleep dysfunction as well as depression) are produced, as well as less of other neurotransmitters;
  • Decreased production of adrenal hormones; Elevated levels of homocysteine, which can lead to cardiac problems; 
  • Decreased cellular energy production aka mitochondrial dysfunction, leading directly to fatigue and post-exertional malaise; 
  • Possibly also an underlying mechanism for depression (see note on serotonin and dopamine above).

Take a look at that list again – notice anything familiar? It’s pretty much a list of most of the symptoms and dysfunctions that define ME/CFS! So, now you begin to see how important methylation is to each and every ME/CFS patient.

Detoxification, one of the processes affected by methylation, becomes supremely important if you have underlying infections (as the majority of ME/CFS patients do) and especially if you are treating those infections. In that case, you need an efficient detox process even more, in order to remove toxins like dead viruses and bacteria and excess medications and supplements from the body.

Those with Lyme or those being treated with antivirals are familiar with Herx reactions, where symptoms worsen (often severely) with treatment because the body is being flooded with dead bugs and extra medication that it can not properly get rid of, causing the immune system to react against the increased presence of viruses or bacteria in the bloodstream.

When methylation is not working well (as in most with ME/CFS) and therefore detoxification pathways aren’t working well, the herx reaction can get worse and worse, until the patient is stuck in crisis mode – totally incapacitated by herx symptoms, even when the medication (antibiotics or antivirals) are severely reduced. That’s where our son was twice – first, at the end of high school a few years ago and again, this past year (sophomore year of college).

This is where it gets somewhat complicated, but even a basic understanding of the methylation process will help you understand what kinds of treatments might help. Methylation is a biochemical process in the body that uses certain raw materials (foods, vitamins, supplements) to convert molecules into other molecules. When the process is working well, all those things listed above happen as they should: DNA, RNA, and crucial neurological components are manufactured; critical hormones (for sleep, mood, healthy adrenal function, and more) are made; and the body detoxes effectively, getting rid of those things that might be harmful to you.

I find the best way to understand the methylation process is to look at it visually:

(NOTE: Diagram is from an excellent article on B12 at ProHealth. Click on diagram to enlarge)

You may not recognize or understand all of the components, but this diagram shows how each step leads to another step and how interrelated the 3 different cycles shown here are to create the full methylation process. You can also see some of the important inputs to the process: proteins, amino acids, vitamin B12, folate and folic acid. And I think it is quite clear that if any one part of this process breaks down – for instance, there isn’t enough B12 or folate – then the entire process will fail, leading to the kinds of problems listed above.

Several methylation experts have emerged who understand the critical importance of the methylation cycle in people with ME/CFS and related illnesses and have made it their life’s work to try to help. Each of the experts has his or her own protocol, so there are some choices; however, they all rely on the critical components of the methylation cycle: vitamin B12 and folate (in various forms).

Dr. Amy Yasko is perhaps best known for pioneering a methylation protocol, designed to help repair dysfunctional methylation processes (and thereby improve the patient’s symptoms in a number of different areas). Interestingly, the focus of her work is in autism in children but it is equally applicable to ME/CFS (not the first time links between ME/CFS and autism have shown up). She has her own explanation of the methylation cycle, if you want to learn more, along with additional diagrams (more complicated than what I included here). Dr. Yasko advocates first getting some genetic testing done and then customizing the methylation protocol based on your results (more on that below).

With our son, we started with Dr. Rich van Konyenburg’s simplified methylation protocol, which I have written about here before. My son was in such terrible shape to start with that we had some difficulties, so I e-mailed Rich directly, and he was kind of enough to respond personally and help us through some of those challenges. Unfortunately, Rich died unexpectedly last year, leaving a big gap in our small world of expert ME/CFS resources. The last version of his simplified methylation protocol is available here, with an excellent Q&A on methylation written by one of Rich's colleagues here.

Typically, any methylation protocol begins with a good quality multi-vitamin, vitamin B12 (more on that in the next post), and 5-MTHF, a form of folate. However – and this is critically important – anyone with ME/CFS should start very slowly with tiny doses and only gradually increase, as tolerated. Any of these supplements can cause their own sort of “herx” reaction, as they get the methylation process working again, suddenly getting detoxification working again and flooding the bloodstream with toxins. As with most things in ME/CFS, low and slow is the rule. For instance, our son started with just a quarter of an 800 mcg 5-MTHF tablet every other day, very slowly working up to 400mcg per day. (Update: As of January 10, 2018, he now takes 20 mg of 5-MTHF a day).

Our son improved a bit on Rich’s protocol, but he was scheduled to start college in a month or so and was still too sick to manage it (as I mentioned earlier, his case is even more complex than most because of the 3 tick infections he is fighting along with his ME/CFS). Our Lyme doctor recommended a consultant who is a registered dietician and has an MS in biochemistry. She is brilliant and not only understands this complicated methylation process but also how that fits in with all the other complicated biochemical processes that are dysfunctional in ME/CFS and Lyme patients.

In the methylation arena, she ran a methylation panel for our son and made recommendations specifically based on his results. She also recommended dietary changes, in part because gluten, casein (the protein found in milk), and gliadin (another protein in wheat and also oats) can all block part of the methylation process. Also foods high in oxalates aren't good for people with ME/CFS (I don't fully understand why yet - still working on that one!).

With her help (and some other changes as well), our son recovered enough to start his freshman year of college alongside his peers, living on campus and taking 3 classes with enough energy left over for a social life. It felt like an absolute miracle to us, and treating methylation problems was definitely a big part of that.

We discovered, however, that you have to be diligent to stay ahead of all the complex problems in ME/CFS and Lyme. After two months, our son gave up on the restricted diet (he was feeling pretty good by then). He kept up the folate and B12 supplements, and continued with his Lyme treatment and all of the treatments for ME/CFS. Eventually, he began gradually declining again, until he was back in crisis mode and completely incapacitated during this winter break (note: this was more than methylation problems but we could tell that was part of the picture). We got back in touch with our dietician, got him back on an even stricter diet (he was so sick, he was willing to try anything). He is again recovering, back in school living on campus, and able to enjoy a social life with his friends, too. Part of his recovery is due to treating yeast overgrowth caused by his Lyme treatment, and part of it is due to getting back on track with the methylation process.

(Update: As of March 16, 2017, he continues to experience ups and downs. He knows how important diet is, but he's 22 and on his own, so it's sometimes tough for him to stick with it. He has learned, though, how important methylation is, and he knows he feels much better when he keeps up with his meds and supplements and remembers his B12 injections every other day.)

To help with methylation and associated processes, he (and I) take the following supplements (links below), remembering that we added these very gradually and slowly:
  • 5-MethylTetraHydroFolate (5-MTHF) We started at 200 mcg every other day and slowly worked up to 400 mcg every day. [3/17 Update: Now, four years later, we have gradually increased to 20 mg daily for both of us.] Links at the end of this post include several options at different doses, as you work up.
  •  Xymogen ActivNutrients multivitamin with no Iron or Copper (rec by our dietican - apparently, it is important to leave out Iron and Copper when you have infections). We order Xymogen products at cost through our specialist's office or online (link is to WholeScripts site, which now sells Xymogen products), using a code we got from our Lyme doctor. 
  • Xymogen ALAMax and Resveratin to assist in mitochondrial energy support [3/17 update: my son is currently off ALA because it can contribute to yeast overgrowth]
  • Calcium D-glucarate for detox support 
  • S-Acetyl Glutathione for detox support and energy (studies have shown people with ME/CFS to have low glutathione levels) - see also my post on glutathione for more information - we have seen big improvements in energy and immune function with glutathione injections.
  • N-Acetyl Cysteine (NAC) - Critical to detox and liver support in ME/CFS and a precursor to glutathione Note that NAC is no longer sold through Amazon and will be switching to prescription in the U.S. but companies are allowed to sell their supplement stock. You can find more brands available at eVitamins and at iHerb.
  • Milk Thistle - brand varies, taken throughout day and helps with detox - critical for liver support and a precursor to glutathione. 
  • Vitamin B12 (more info at the link) - I started with a sublingual tablet combo product, until my son told me to stop being a baby! ha ha He and I both now do subcutaneous (under the skin) self-injections every other day, alternating hydroxy- and methyl- B12. The needles are tiny and he was right - I barely feel it - and our injections are also tiny because we use a high concentration (25 mg/ml). Injections are known to be far more effective in getting the B12 to where it is needed. Sublingual pills (that melt under your tongue) are next in effectiveness, and B12 pills that you swallow or chew are very poorly absorbed. You need a prescription for injectable B12 and get it from a compounding pharmacy - it is inexpensive.

More recently, my son and I both had genetic testing done through 23andme (maybe I need another post on that!) and ran our results through Genetic Genie to find out what genetic defects we each have relative to methylation. A couple of problem areas showed up for each of us, so our next step was to work with our dietician to understand what the genetic results mean and how to adjust the methylation protocol accordingly (as Yasko recommends, too).

This post turned out much longer than I had planned, but it is a complicated and important subject. Next up is a post on the use of B12, including importance, uses, dosing, types, etc. From what I’ve read, it seems that everyone with ME/CFS can benefit from vitamin B12 supplementation, but it has to be done right in order to be effective. That one is already half-written, so I hope to post it here within the next week. [3/17 Update: you can find the B12 post here.]

Please share your own experiences with treating methylation and/or questions in the comments area. I am still learning about this critical part of ME/CFS, and I’m sure others would benefit from comments and questions also.

NOTE: Someone reminded me that I didn't mention SAMe in this summary. if you look at the diagram above, you can see that SAMe is a part of the methylation cycle; however, it is not recommended that all people with ME/CFS supplement with SAMe. My son tried it and got worse. Here's the way that Rich Van Konyenburg explained it to me:
"This was initially included in the protocol I proposed, but so many people could not tolerate it that I took it out.  SAMe will come up automatically if the partial block of methionine synthase is lifted by the methylation protocol.  I think that some people have difficulty dealing with all the sulfur if given NAC and SAMe.  The sulfur must all pass through the sulfite oxidase reaction, and if it can't handle it, sulfite builds up and gives headaches, difficulty in breathing, and/or rashes.  It also further lowers glutathione."
One of the common genetic defects related to methylation causes an inability to metabolize sulfur compounds, and this is relatively common in people with ME/CFS (both my son and I both have this defect and have reacted badly to sulfa antibiotics), so perhaps this is part of the reason why supplementing with SAMe sometimes makes ME/CFS patients worse. So if you do try it in spite of Rich's warning, watch for negative reactions which may worsen over time.

NOTE: FolaPro is the 5-MTHF supplement that Rich recommends in his Simplified Methylation Protocol, linked to above. It is a low dose and comes in tablets that can be halved or quartered, so we started with that at a very low dose, as described above. As we increased the dose, we switched to other brands shown below.

Note: This post contains affiliate links. Purchases from these links provide a small commission to me, to help offset the time I spend writing for this blog, at no extra cost to you.

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Wednesday, April 09, 2014

PET Imaging May Provide Diagnostic Test for ME/CFS

An exciting new research study published in Science Daily shows that PET functional imaging may be a useful diagnostic tool for ME/CFS in the future. It was a small study - just 9 people with ME/CFS and 10 healthy controls - but researchers were able to clearly show evidence of neuroinflammation (inflammation of the nervous system and brain) in the ME/CFS patients. They could even see a clear correlation between the type of symptoms reported (for instance, cognitive dysfunction) and the areas of inflammation in the brain.

This is exciting research that could lead directly to a way to diagnose ME/CFS! It remains to be seen whether this method is specific enough to differentiate between ME/CFS and other conditions that cause neuroinflammation, but at the very least, it provides incontrovertible proof of disability and illness.

Best of all, the study was reported in the mainstream media! I got this link from a childhood friend of mine who thought of me when he read it and sent me an e-mail. That alone is reason to celebrate - awareness is growing!

Monday, April 07, 2014

Movie Monday 4/7

Our college son was home on spring break all last week. He's been doing pretty well, thanks to the drastic changes we made to medications, supplements, and diet two months ago. That's "pretty well" on an ME/CFS (and Lyme) scale, so he is still struggling with stamina and cognitive functioning. But he's living on campus, taking three difficult engineering courses, and has some energy left for socializing and having fun with his friends. This was a rest-up and recuperation week for him - he spent much of the week reading (about 8 books in 10 days!), playing video games, and catching up on all the TV series he's missed while at school.

So, we didn't watch any movies last week, but I thought I'd tell you about all the great TV shows we caught up on - both old favorites of ours and some really great new shows.

In the old favorites category, he was excited to be home so he could catch up on missed episodes of Arrow, The Following, Elementary - we all enjoy these shows together and he tries to keep up when he comes home on Sundays.

My husband was out of town last week, so the boys and I also tried some new shows. All three of us watched The 100, a brand new post-apocalytpic/dystopian/science fiction show set 100 years into the future, after earth was decimated by nuclear holocaust. The remaining humans have been living in a space station, but now they are in danger of running out of oxygen. They send 100 teenagers (most are criminals to one degree or another) back down to earth to find out if it is safe to live there again. We are all enjoying the show (my husband caught up when he came home and joined us in the latest episode) - it's full of action and adventure.

Jamie and I also tried Believe, and we LOVE it! It reminds us a bit of Touch (which we hated to hear was cancelled), with a young child with special talents at its center. In the first episode, we lost track of how many different group of people were after this poor little girl! So, this is another show full of action and adventure and lots of chase scenes but also plenty of warmth and heart. The little girl playing the lead role is amazing. We are totally hooked, and this is our new favorite.

Jamie had friends over two evenings, and I discovered that it was Watchathon Week for our cable provider, meaning that many of the channels (even the pay ones) put whole seasons of their most popular shows up for free On Demand for the week. I watched a couple of episodes of Girls (which airs on HBO) and would love to see more - I'll have to request the DVDs from the library. When Jamie discovered Watchathon Week, he dove into Black Sails, a new pirate show on Starz.

I'm glad to have my husband back home now - he and I have too many shows that we're hooked on at the moment! We are enjoying some old favorites like The Good Wife (did you see that surprise ending??), Grey's Anatomy (he's not so interested in it anymore, but I still love it), The Americans, Revolution, and Blacklist (I told you there are too many!). We've also started to watch Resurrection, about a town where the dead start returning, just as they were before they died, which we are loving.

That seems like a lot of TV, but I am pretty useless past 6 or 7 pm, so it is something fun we can do together before we head up to bed to read at 9 pm.

What are your favorite TV series right now?

And if you are interested in what we've been reading this week, check out the Monday post at my book blog.

P.S. I am still learning but am so far enjoying Twitter and haven't let it take over my life! If you are on Twitter, you can follow me at @livewithmecfs