Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Friday, March 29, 2013

A new baby enters our lives

On Wednesday, my wife and I welcomed a new baby girl into our family. She is healthy and happy and sleeps about 20 hours per day...so far. We're still staying in the hospital today, but looking forward to finally returning home tomorrow. Our 18-month-old, meanwhile, is at home enjoying getting spoiled by her grandparents.

I feel very lucky to have gotten this second chance at experiencing the birth of a child. When my first daughter was born, it was less than two months into my ordeal with ME/CFS and I still had no idea what was happening to me (this was pre diagnosis).  I was in the middle of a heavy crash on the day of her birth and all throughout our stay in the hospital, but I tried to mask it so as not to detract from everyone else's joy. Obviously, it would have been selfish to make that day about me. It was still a joyful time for me as well, but there was also this lingering fear and uncertainty in the back of my mind.  Since all I knew at the time was that I had been extremely ill for 2 straight months, my thoughts sometimes wandered to the worst possibilities.

So I feel very fortunate for this second opportunity. I've been at my baseline or better the last three days. I'm trying to soak up every second of this experience because we're not planning on doing it again.  I must say, bringing a child into the world has a way of making me reflect deeply on the meaning of life, happiness, etc. (including my new life with ME).  This time, it was a fully positive trip.

Saturday, March 23, 2013

I think I saved a girl from a drowning today

[If you want to skip over the background of this story, jump to the break below]

I remember back to when my ME/CFS was in its acute phase just after the initial viral infection.  During those first 4 or 5 scary months, I was desperate to learn what was wrong with me, and ultimately drove several hours up the coast to a clinic in Santa Barbara that supposedly specializes in diagnosing hard-to-diagnose illnesses.  I remember struggling to find a way to convey to the doctor exactly how profoundly ill I felt on a daily basis.  I finally realized a way to explain it:

"If a crazed murderer was coming after me with a knife, I would have to let him stab me.  I literally could not run away to save my life."

I know that sounds dubious, but I meant it.  A few months later, I climbed out of the acute phase of illness and entered my current phase of being a more moderately ill PWME.  Now, its physically possible to muster the energy to jog or even run if I need to, but I'll pay the price later with intense post exertional malaise (PEM), akin to the worst of hangovers. 

Today I discovered exactly how fast I'm capable of running in an emergency situation.

Over the last 8 weeks, my wife and I have started taking trips to the nearby beach at least once per weekend.  My theory is that the beach is an almost perfect "activity" for a moderately ill PWME like myself.  I can get from the parking lot to the sand in no more than 25 paces, set up my beach chair, and simply enjoy the sort of full immersion of the senses that few other places equal.  I can get regular doses of natural vitamin D from the sunlight and dig my feet into the sand for some "grounding." (I'm not sure that I really believe the alleged therapeutical benefits of grounding, but it feels good to be barefoot nonetheless.)

We also believe that it's good for our eighteen month old daughter be exposed to natural environments as much as possible.  And judging by her joy, my daughter can't get enough of being "owsigh" (outside).

This morning we made our usual weekend drive to one of our favorite beaches in Laguna Beach, about a 10 minute drive away.   We set up our chairs and my daughter began her usual sand play and explorations.  By 40 minutes later, it was turning into quite an eventful morning for someone who's just sitting in a beach chair.  A playful whale repeatedly breached a couple hundred yards off the coast.  While whale sightings are fairly common in Laguna Beach, breaching is fairly rare. This is when the whale launches vertically into the air and flops over onto it's back.  I had never seen it before.  

Later, a WWII era fighter plane buzzed the beach, flying no more than 20 feet from the ground.  The crazy pilot flew so low that it almost looked as if someone could jump up and touch the underside of the plane as it flew by. 

The thin overcast had soon burned off, a few groups of children were playing by the surf, and it was starting to become a rare, sublime morning.  

                                                            ___________________

One thing you should know about this particular beach is that it is not considered a swimming beach.  Signs warn beachgoers not to attempt swimming because of a dangerous eddy created by the shape of the ocean floor.  In fact, the signs even warn children not to go near the water and not to "play tag with the waves."  

At this particular beach, because of the way the land slopes steeply into the ocean, the waves don't break until they are actually on shore.  This becomes quite a show when, as today, the waves were 5 to 6 feet high.  The combination of the outgoing waves slipping underneath the incoming waves in the other direction creates an swirling (but mostly unseen) eddy just off shore.  (I'm not sure if "eddy" is actually the correct term because it's a vertical swirling motion, like a front-loading washing machine, not like a top-loader.)

As we were discussing whether to leave for home, we heard a boy's voice yelling from near the shoreline.  When we looked, the boy stood on the wet sand frantically waving, shouting and pointing toward the waves behind him.  We both squinted for a sharper look and could see a tiny blond head that appeared to be struggling to stay above the surface of the water as the eddy roiled around her.  

There followed an eerie second or two where my wife and I looked at each other trying to determine if this was a real emergency.  After all, children yell and scream all the time, especially at the beach.  We were too far away to hear his words. And the girl could have been playfully splashing, although something didn't seem right.  I glanced around for confirmation of the seriousness of the situation in the reactions of others nearby, but most were oblivious.  One other nearby couple noticed the situation, but they seemed to have the same uncertainty as we did.  I asked my wife, "this is real, right?"  She said, "yes, this is real."  

The next thing I knew, I was out of my chair and in a full sprint down the sloping beach toward the water.  As I ran, I noticed another gentleman in a blue shirt had been walking by the scene, but much closer to the water.  He too turned toward the girl and began jogging toward the waves.  Since he was much closer to the girl, I figured that he would jump in the water first and save the girl and I would arrive in time to help drag her out of the water.

But the man in the blue shirt slowed down and then stopped as he reached the water line.  I wasn't sure why, at the time.  I ran past him and started high-stepping into the waves.  It wasn't long before I plucked the little girl out of the eddy.  She was face-down in the eddy when I got to her.  It was only waist-deep water for me.  As I carried her back to land, I asked her if she was breathing and she suddenly began to cry, which I took to be a good sign.  I could see now she appeared to be about 5 or 6 years old.

By the time we got back on shore, the little girl's siblings and a handful of other adults had come down to meet us.  I assumed that the girl's parents were among them and, by this time, the blue-shirted gentleman started taking an active role in assessing her health.  The girl seemed perfectly fine, although shaken up a bit, so I let the parents take over and walked back to my beach chair.  My wife and I began sort of 'debriefing,' as we watched from afar the crowd of people gathering around the little girl.

Just then I felt a weight in the pocket of my wet pants, and pulled it out to find my iPhone water logged and dead.  But because of the excitement of the rescue, I easily shrugged it off.

Soon, blue-shirted man came over and introduced himself.  He said he was not related to the girl but wanted to thank me for getting him out of a tough situation.  It turns out that he had recently undergone neck surgery and didn't yet have full range of motion.  When he saw that the girl was in trouble, he instinctively moved toward her, but as he reached the water, he realized he might become another victim if he tried to intervene.  

He must have noticed me frown at my phone as he approached because he said that he knew someone who worked for Apple and that he could get me a new phone by telling the friend that I ruined it while rescuing a drowning girl.  He took down my wife's phone number and, to his credit, he actually followed up later with a text message saying that he had arranged for me to get my new phone from Apple.  Alas, my stupid existing iPhone came back to life later that afternoon, so there will be no new iPhone for menot that I'm complaining. 

Blue-shirt man also mentioned that when I first pulled the girl from the water, it appeared that she was not breathing.  He said that after I took two or three steps toward shore, I shifted her in my arms and that's when she coughed up some water and began to cry.  I hadn't notice the girl cough up any water, but I do remember shifting her in my arms and asking her a question, and her beginning to cry soon after.  

A few minutes later, the mother of the girl came over and stood by my chair, thanking me.  It became clear that she felt she needed to explain herself to me, lest I think her neglectful.  I felt embarrassed and wanted to put her at ease, but nothing I could say seemed to help.  I didn't want her to think I was judgmental.  She explained that she is from New Jersey, that her kids regularly play in the ocean there, and that they are strong swimmers.  She didn't think the conditions would be more dangerous here.  

She was a very nice lady, and I hope she understood that I didn't expect an explanation.  The girl sobbed in her mother's arms as we spoke, while her brotherabout eight years oldclung to the mother's leg, crying uncontrollably.  It was touching to witness how much he cared for his sister.  

Meanwhile, my daughter wasn't quite sure what was happening, but she seemed thrilled by the suddenly bustling scene around her.   

With the drama winding down, we packed our things and headed for the car, as our parking meter was about to expire and my clothes (including heavy corduroy pants) were soaked.  

As I write this 10 hours later, I'm still at my baseline health with no sign of a crash yetalthough I wouldn't expect one until at least tomorrow.  But obviously, if I do crash, it will be the most "worth it" crash of my life.  

Wednesday, March 20, 2013

Digestive enzymes = crash?

Over the last couple of weeks, I have been dutifully taking various Basic Support supplements from Yasko's protocol, adding a new one each 3 or 4 days.  So far, I've added pyconegol, General Inflammatory RNA support, Adenosyl, and the general multivitamin called Neurological Health Formula.  Everything has been going well...until today.

I added digestive enzymes this morning, taking only 1 pill (2 are recommended).  Within a half hour it was clear that I was spiraling down into a very bad crash with nausea, brain fog, and neuro symptoms in the legs and arms (numbness and incoordination).  The crash has lasted all day and shown no signs of letting up.  In fact, I'm struggling to type this because of the neuro symptoms.

Ordinarily, I would have left work and gone home but I have a deadline this week and simply couldn't miss work today.  Frankly, it was miserable.  Trying to concentrate when my brain is fighting against me is not fun.  Worse is trying to act normal with my cooworkers when they are attempting to discuss complicated topics with me.  I put on my best business face and did the best I could.  I'm not sure if they noticed anything was wrong, but I wouldn't be surprised if they did.  At times, it was clear that I wasn't making much sense.  

Hopefully if I stop taking the digestive enzymes, these symptoms will disappear quickly.  But of course, I can never be 100% certain of the cause of any crash.  There's always a few other suspects hanging around, creating doubt.  Could this be delayed effect of the adenosyl, i.e. hypokalemia? Or just a crash from the hectic activity of the last few days?

I'd be interested in hearing from anyone else who had a similar experience with digestive enzymes.  I'm not even sure exactly why Dr. Yasko recommends them, so I'll have to research that issue as well.

Thanks for reading today.  



Thursday, March 14, 2013

Nutrigenomics: Addressing CBS & BHMT mutations

In this post, I compile a list of six clues to determine if CBS & BHMT mutations are an issue for those of us who have heterozygous CBS & BHMT mutations and, therefore, aren't sure if we are up-regulators.  This list is compiled from Dr. Yasko's book and the Methylation section of the Heartfixer website, where each clue is mentioned in different areas, but never compiled as a list .

For those of us that decide to go the nutrigenomics route to treating ME/CFS, one of the first problems we encounter is deciphering whether CBS & BHMT mutations are problematic. These two mutations are up-regulations, leading to high levels of sulfate and ammonia.  As Dr. Yasko puts it, this up-regulation leaves the "drain open" meaning that any other methylation supports will go "down the CBS drain" if the CBS mutation is not addressed first.

If you are homogygous (+/+) for any CBS mutation, there is no question that you are affected.  But there's ambiguity for those of us who are heterozygous (+/-) for the CBS mutation, especially if it's the lesser of the two mutations: CBS A360A.  (Note there are also some people who believe that Dr. Yasko is incorrect and that CBS mutations are not important.  See posts #17-19 in this PR thread.)

Six Clues


Urine sulfate levels:  Urine sulfate levels can be tested at home using these urine sulfate test strips.  Ideally, you want your urine sulfate levels below 400, but if that's not possible, then below 800 is apparently acceptable. (Heartfixer, see Overview, #2).  Mine is testing around 800.  CONCLUSION: SLIGHT PROBLEM.

Blood ammonia levels:  If blood ammonia levels are high or high-normal, it tends to indicate CBS or BHMT issues.  Mine tested at the highest possible number without being out of range: 47 (normal range is ≤47 ┬Ámol/L.  CONCLUSION: PROBLEM

Sulfur Tolerances:  If someone has a CBS and/or BHMT mutation, supposedly they will not tolerate sulfur well.  This means they will have an adverse reaction to foods or supplements containing high sulfur.  For me, I have never noticed any adverse affects from eating eggs, broccoli, and other foods high in sulfur.  (It's not clear what the adverse reaction would be).  Also, I underwent a heavy metal detoxification protocol last September using DMSA, which contains high amounts of sulfur.  I did not have any adverse reactions.  CONCLUSION: NO PROBLEM

Blood homocysteine levels:  Supposedly, the CBS mutations usually lead to low or low-normal levels of homocysteine.  I've never seen "low" defined, but optimal levels are considered to be around 6 to 7, so "low" is obviously below that.   Mine, when tested last in December, 2011, was 9.1, which is within range, but above optimal.  (Reference range is <14.4)  This might suggest that I don't have CBS or BHMT mutation issues, except for the fact that I have other mutations SHMT (+/-), MTR A2756G (+/-), and MTRR A664A (+/+) which lead to high levels of homocysteine.  So it's possible that these other mutations are counterbalancing the CBS up-regulation.   CONCLUSION:  UNCLEAR

Which CBS mutation?:  As mentioned above, the CBS A360A is the least severe of the CBS mutations, leading to only about 1/40th the amount of up-regulation as the CBS C699T.  Further, if you are heterozygous (+/-) like me, it's not clear if that particular mutation is "turned on."  CONCLUSION: UNCLEAR

Combinations of mutations:  Someone who only has a CBS mutation or only has a BHMT mutation is less likely to have a problem than someone who has both.  Personally, I am heterozygous for CBS A360A and 3 of the 4 BHMT mutations: 2, 4, and 8.  (1 is not tested by 23andMe).  CONCLUSION: LIKELY PROBLEM

Conclusion

It's still a little unclear, but to be safe, I'm going to assume that I have a slight to moderate issue with CBS up-regulation, and cut down a little on the highest sulfur foods, but I won't radically change my diet.  I will also supplement with Yucca and charcoal flushes before proceeding to the next phase of the methylation protocol.

[updated 5/23/13]

[5/28/13]  This thread from Phoenix Rising provides some interesting feedback from other users trying to   treat CBS and BHMT mutations.  

Tuesday, March 12, 2013

Summary of 4th appointment with Dr. C

The great thing about appointments with Dr. C is that he always gives hope for the future. It seems he and his team are constantly working on solutions to ME/CFS, for which he's usually very excited (in his own, understated way).  For instance, today he mentioned that, since March of 2012, he and his team have been going back over drugs that are already in existence and testing them, in a Petri dish, for anti-viral properties.  He said there have been many early, encouraging results, but these drugs won't be ready to try on ME/CFS patients for some time (unspecified).

He also said that there are two new anti-viral drugs scheduled to arrive on the market in the next couple of years that he believes will greatly benefit ME/CFS patients, although he cautioned that one of the drugs will be very expensive ($10-$20,000 per month!).

My overall impression from this appointment was that, while viruses cause ME/CFS, each of us responds differently to treatment because we have different viral loads. It seems that successful treatment is about finding the right combination of antivirals to address each individual's viral load.  (This is my interpretation of the "theme" of Dr. Chia's explanations.)

Amantadine

We first discussed the fact that I had tried adding Amantadine to my usual regimen of 6 Equilibrant tablets per day, but that, after a month's trial, I saw no improvement.  He was not surprised and made a comment later that seemed to indicate that Amantadine may be falling out of his favor.  (For a full explanation of why we tried Amantadine and Epivir, see this summary of my prior appointment.)

Epivir

Next we discussed how I tried Epivir but was forced to quit after only 3 days due to a major flare in my shortness of breath, which landed me in the Emergency Room.  Dr. C stated that he and his team have recently discovered that some antivirals actually increase the replication of certain viruses while suppressing others. Since I haven't had a stomach biopsy and we don't know what specific enterovirus I (may) have, we're doing guesswork at this point. He said that the shortness of breath could also have been a die-off reaction, or it could have been the stimulation of viruses in my lungs.  He said it's not worth testing either theory and I agreed. 

To illustrate the point about antiviral medications having different effects depending on the virus, Dr. C mentioned that patients for whom echovirus 6 and/or 7 is a major contributing factor to their ME/CFS don't respond to Epivir.  Epivir is simply ineffective against echovirus 6 and 7, but very effective against other viruses.

Rifampin

Dr. C then said that he has one more"trick" he can try—one more drug to try adding to Equilibrant—to induce the desired response from the immune system. It's actually an antibiotic called Rifampin. He explained that Rifampin seems to also have anti-viral properties and has worked on quite a few ME/CFS patients when combined with Equilibrant.

When it works, the patient usually feels strong flu-like symptoms within a week or two after starting the Rifampin. After the flu-like symptoms resolve, some patients find that their immune systems have cleared much or most of the viruses.   However, a patient only gets one shot at this treatment. If a patients starts the treatment and does not finish it for any reason, the virus will never respond to the Rifampin if taken again in the future.

Rather than try to remember everything Dr. C said about Rifampin, I have attached an informational handout Dr. C gave to me. (Click the image at the bottom of this post) It appears to be a summary of a presentation he gave at the 2011 IACFSME meeting in Ottawa.  The copy below may be difficult to read as a JPG image.  If you prefer, I can email a PDF version.

If Rifampin doesn't work , Dr. C said the he would probably have new antiviral medications to try at my next appointment in early July.

Different Equilibrant Treatment Progressions

I asked if viruses can adapt to Equilibrant, causing the Equilibrant to lose it's effectiveness   He said yes, it is possible.  For those who respond to Equilibrant he sees three different trajectories.  There are some who begin a steady climb upwards until they are in remission, which he illustrated by a straight line (on an imaginary graph) going steadily upward at a 45 degree angle.  

Other patients improve by about 10 to 40 percent, but then reach a plateau.  (So far, this describes me). The goal for those patients is to find another immune modulator or antiviral drug that will compliment the Equilibrant and bring the patient all the way to remission.  Otherwise, this group continues on the plateau or falls to the third group...  

Finally, there is third group that initially sees a 10 to 40 percent improvement, but then eventually returns down to their previous level of ill health.  He said that most of these patients contract another virus which precipitates the downfall.  In other cases, the person becomes too active too fast after experiencing improvements from Equilibrant, leading to a permanent decline.  

I am slightly concerned that I may end up in this third group given that I live with a germ factory (soon to be two germ factories) known as pre-school age children.  My goal will be to have the best hygiene as reasonably possible when dealing with my kid(s), without becoming a neurotic germ freak.  

Pro-Inflammatory Versus Anti-Inflammatory

I next asked about something that has been confusing me since my first appointment.  When Dr. C explained the Th1/Th2 immune imbalance, he said that the Th1 side of the immune system (the side in which PWMEs are deficient) is the pro-inflammatory side.  He said that Equilibrant will shift the immune system toward a pro-inflammatory response. 

This has always confused me because much of the the literature on ME/CFS focuses on anti-inflammatory treatments. Whether it's diet or reducing pro-inflammatory cytokines, the literature focuses on reducing inflammation, not increasing it.  

Dr. C explained that I was talking about unrelated kinds of "inflammation."  The details were a little hazy, but the take-away was that there is no need to worry about an anti-inflammatory diet working against Equilibrant.  

My Lab Results

For the second month in a row, my lab results show macrocytic anemia (high MCV), now joined by high MCH as well.  Both are barely high (100.4 and 33.8 respectively).

I was about to write that these results, once again, indicate a need to return to a vitamin B12 protocol (which I'm working on.)  But as I was writing this, I quickly consulted Google for additional information about High MCH.  As I typed in "High MC..." Google showed results for "High MCV valacyclovir."  This caught my attention because I am taking valacyclovir.  It appears now that my macrocytic anemia may be a side effect of the valacyclovir.  

Once again, I'm reminded of the complications that arise when one takes a multitude of prescription drugs and supplements.

If you're interested in reading more reports of appointments with Dr. C, my friend Chris McLaughlin has started what will become a series of posts on her appointments with Dr. C, hosted on Cort Johnson's website.  The summaries of my past appointment with Dr. C can always be found by clicking the "Equilibrant" label in the right margin of this website, or by clicking here.  
You can click to enlarge this image slightly.  It you still find it unreadable, I might be able to email the original to you. 






















Sunday, March 3, 2013

New book review

I added a new book review to my ME/CFS book review page.  The book is Autism: Pathways to Recovery, by Dr. Amy Yasko.

My nutrigenomics plan

I finally finished reading Dr. Amy Yasko's book Autism: Pathways to Recovery and am ready to start implementing a nutrigenomics plan tailored to my genetic polymorphisms (SNPs).  This will be  a long process that could take several years, so the plan will likely evolve as test results come in and I measure my progress.  For that reason, I'm keeping this outline general for now, allowing for flexibility.

I should quickly explain for those who aren't familiar with Dr. Yasko why I'm following an autism recovery plan for ME/CFS.  Oddly enough, studies show that children with autism and adults with ME/CFS generally have the same or similar genetic polymorphisms causing a block in one of the body's key detoxification systems, called the methylation cycle.  How these same SNPs could lead to such different conditions is unclear.  But Dr. Yasko studied ME/CFS and other neuro-immune illnesses prior to her work with autism and, throughout her book, she speaks to both parents of autistic children and adults with ME/CFS.

I happen to know that my methylation cycle is broken because I've had it tested. [Results here]  I've also had the 23andMe genetic test, which also shows some of the SNPs that are common in people with a broken methylation cycle.  And recent blood tests results show that I now officially have marcocytic anemia (red blood cells are oversized), indicating a body starved for vitamin B12.

I've tried supplementing large doses of vitamin B12 previously on a simplified methylation protocol (Fredd's protocol) but it didn't seem to do anything for me.  After reading Dr. Yasko's book it's clear why.  Until I fix another SNP that's further upstream, all the supplements I take will simply pour out the "CBS gate."  When I say "fix" I don't mean that I can change my genes (that's impossible), but it is possible to change the way genes are expressed and thereby work around those defects.

To put this plan together, I made the binder pictured below with tabs for 1) My 23andMe / Genetic Genie results, 2) Methylation Pathways Panel results, 3) a printout of the Heartfixer.com section on methylation cycle nutrigenomics, and 4) a printout of Dr. Yasko's entire book.  I know this probably seems like overkill, but this topic is so complicated that I needed to get as organized as possible if I wanted to have a shot of understanding it.



So with that, here's the plan I've put together based on Dr. Yasko's book and my specific SNPs:

[Warning: Much of what follows is notes to myself, posted here because this is where I keep all my health notes.  It may of limited  or no interest to other PWMEs, unless you happen to have my same SNPs.]

Step 1 - Preparation, Diet & Supplemention


Basic Supplement Support (selected from list on p. 79):  Neurological Health Formula, Nerve Calm Inflammatory Pathway Support RNA, General Inflammatory Support RNA, Magnesium, Zinc, Vitmin D-3, Cod liver oil, OraKidney + Kidney Inflammatory Pathway Support RNA (a few times per week), Pycenogol, Grape Seed Extract, Vitamin C, Probiotic, and possibly GABA.    

Eliminate Excitotoxins (Foods that Damage Nerves) from Diet:  See list on page 99-100 and 101, especially guar gum, malted anything, maltodextrin, "natural flavors," soup base, soy protein, stock, whey protein concentrate, glutamate, aspartate, aspartame, L-cysteine, canned soup, egg substitutes, flavored teas and sodas, gelatin, mayonnaise, xanthan gum and other "gums," and foods that are high in glutamate, including: soy, mushrooms, tomatoes, parmesan cheese, yeast, milk and wheat. 

Promote Healthy Digestion: Rotate probiotics daily and continue addressing candida.  Other than that, not much more is needed here because I pass most tests listed on page 113.

Step 2 - Optimizing Methylation Cycle

Part 1

Mineral balance:  Make sure minerals are still balanced.  Possibly take a UTM test.  (p. 188).  Keep calcium levels low to normal because calcium stimulates excitotoxin activity.  

Addressing SHMT (+/-) and ACAT (n/a) mutations: These are first priority mutations that suggest a greater likelihood of retaining aluminum.  Supplement lactoferrin and Acti-Folate and possibly some adenosyl B-12.  See pp. 128-129.

Addressing CBS mutations:  I am +/- for the CBS A360A mutation, and negative for the other 2.  This is the least severe form of the CBS mutation.  With this mutation, the "gate is open" sending all nutritional support out the open gate unless addressed first.  Do this for at least 4-6 weeks before adding any other methylation supports, (p. 130) then continue to follow the CBS recommendations long-term.  Take: Ammonia support RNA, cut down on animal proteins, limit foods with sulfur (p.133), supplement Yucca with every meal with protein, and do one or more charcoal flushes per week.  p.131.  Also limit amounts of CoQ10 and Alpha Lipoic Acid.  p. 157.

*Note: Yasko's theory about the importance of CBS mutation and, particularly, the importance of limiting sulfer is controversial. See this discussion on PR, starting at post #16.  I've decided to cut down on sulfer slightly, but not too much.   My sulfate urine levels are already below 800, which is acceptable according to Heartfixer. 

Testing: Monitor molybdenum & manganese levels and taurine levels. p. 134. Test with sulfite and sulfate urine test strips. p. 138.

Addressing Second Priority Mutations:  

COMT V158M (+/-) and VDR Taq (+/-):  Since I am COMT +/-, I may or may not have a reduced tolerance for methly donors.  Supplement with hydroxycobalmin B12 cyanocobalmin B12, dibencozide (adenosyl) B12 and possibly methylcobalmin B12 too. 

MTR A2756G +/- and MTRR A664A +/+:  These mutations also indicate a need for B12 support. (See above).  Note Dr. Yasko prefers at least some of one's B12 to be absorbed through the gut with the help of IntrinsicFactor. p.145.

Testing:  Make sure cobalt levels are in line. p. 148.

MTHFR A1298C +/-:   This mutation contributes to low BH4 levels, which impacts ability to detoxify and limit ammonia, and allows aluminum retention.  p. 149.  Use low dose CCK support (1/8 to 1/ per day) with CCK support RNA.  p. 150.  

BHMT 2, 4, & 8 +/-:  Having these mutations can produce UAA test results similar to a CBS mutation. This reinforces the need for ammonia support (see above.)

Mitochondrial Support:  Maybe add idebenone and NADH to CoQ10 and ALA (but limited amounts of ALA due to CBS mutation). p. 160.

Glutathione Support:  Supplementing directly with glutathione can be considered at this point. But, it has never seemed to help in the past when I've received glutathione shots 2x from Dr. W.  Try again?

Part 2 - Increasing Detoxification

Metals Detoxification:  The following are all "if needed" treatments at this point:

Metals I program:  p. 176.

Metals II program:  p. 177.

Metals III program:  p. 178.

Metals IV program:  p. 179.

Immune Factors:  Use immune factors 1, 2, 7, 8 and possibly 9 and 10.  p. 181.


Step 3 - Remyelinating the Nerves

Try adding in SAMe, nucleotides and others from p. 192-192.  See also, Supports for Oxygenation and New Nerve Growth. p. 195.

[updated 5/23/13]