Monday, July 13, 2009

Starting a New CFS Treatment Plan

I started a new CFS treatment plan yesterday. It's the one by Dr. Rich Van Konynenburg that I mentioned in a previous post. The official name of the treatment is "Simplified Treatment Approach Based on the Glutathione Depletion- Methylation Cycle Block Pathogenesis Hypothesis for Chronic Fatigue Syndrome." There are some preliminary research results on the treatment plan. They look very promising.

My doctor approved this treatment before I left for Utah.

Here's the treatment plan:

1. One-quarter tablet (200 micrograms) Actifolate (Folapro is 5-methyl tetrahydrofolate, an active form of folate, which is sold by Metagenics with a license from Merck, which holds the patent on synthesis).

2. One-quarter tablet Intrinsic B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, also known as folinic acid or leucovorin (another active form of folate), 125 micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of calcium, 17.25 milligrams of phosphorus, and 5 milligrams of intrinsic factor).

3. Up to two tablets (It's best to start with one-quarter tablet and work up as tolerated) General Vitamin Neurological Health Formula from Holistic Health Consultants (This is a multivitamin, multimineral supplement with some additional ingredients. It does not contain iron or copper, and it has a high ratio of magnesium to calcium. It contains antioxidants, sometrimethylglycine, some nucleotides, and several supplements to support the sulfur metabolism.)

4. One softgel capsule Phosphatidyl Serine Complex (Vitamin Discount Center)(This includes the phospholipids and some fatty acids)

5. Activated B12 Guard (Perque) (2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract)

After reading all the cautions, I decided to start out slowly by taking the supplements every other day for the next week or two...depending on how I feel. I am taking the recommended 1/4 tablets of the Actifolate and the Intrinsic B12/folate, 1/4 tablet of the Neurological Health Formula, and the recommended 1 softgel of the Phosphatidyl Serine Complex. However, rather than taking a full pill of the Activated B12 Guard, I am taking a 1/2 pill.

The last thing I want is a major energy crash.

As far as I can tell, I don't feel much different today than I did before I took yesterday's dose...though I did have a major bout of diarrhea this afternoon (which could actually be from my irritable bowel syndrome or from what I ate at lunch) and I'm fighting off a major headache (which could be from anything). I'm also REALLY tired, but that's probably because I had trouble sleeping last night.

Since I'm listing my current symptoms, I might as well mention that I'm also trying to get over a mild rash on my back and abdomen that appeared on Thursday in Utah. I suspect it was an allergic reaction to a detergent we used on Wednesday when we washed our clothes. I feel like I develop new allergies all the time.

There's always something wonky going on with my body. It's really kind of annoying.

Here's hoping that this new treatment plan is successful!


cinderkeys said...

Good luck, and keep us posted.

Jozephine said...

I'll be very interested in how you get on.

I know what you mean about 'there's always something wonky going on'. Symptoms seem to shift all the time. If I have pain, it's not always in the same place or the same kind of pain. I'll get a food intolerance for a few months, and then be OK again.

Good luck with the new protocol. Are you keeping a daily diary? Might help to see if anything really is changing. You are a true pioneer!

Laurel said...

Good luck with this new approach! Hope it helps.

cfswarrior said...

That's great you are trying the methlyation protocol. There is a yahoo group that has a lot of good information (

alyson said...

Thanks for all the well wishes and info, everyone! I'll be sure to post updates. I'm not actually keeping a daily diary (the idea of starting one is too mentally taxing for now), but I'll keep track of any new developments on my blog. The best part is that I had all those blood tests before I started treatment, so I have a baseline.

perpetualspiral said...

Hey, good luck to you, i have not heard of this particular treatment. I hope you get results and will be following your progress!

I volunteer for the WorldWide Association for ME/CFS Awareness and Research ( and was wondering if you would be interested in writing about this treatment plan and your experiences with it for our website/newsletter? I realize with CFS/ME every little task can be a huge chore so I totally understand if you decline :) WAMCARE is made up of mostly ppl with ME/CFS so we're flexible about deadlines and stuff too. Let me know if u are interested:

Best of luck, Alyson, and thank you for your blog and everything you do :)

alyson said...

Hi perpetualspiral, I'm crunched for time at the moment, but I wanted to respond to your post really quickly. I'd be happy to write something about my experiences on the new treatment plan. It may be a while before I write anything, though, since I just started the treatment this week. I'll send you an email when I get a chance. I'm also going to add your blog and links to my blog when I have a bit more time.

Sue Jackson said...

I've heard from others also on this protocol - I'll be interested to hear how it works for you.

For what it's worth, I've tried B12 supplements before, but they gave me diarrhea, so maybe that's what happened with you when you first started.

As for keeping a daily diary, I found a very simple approach that I've been able to keep up for 7 years. I keep a monthly calendar by my bedside and before bed, I just jot down a rating of how I felt that day. I use a 1-5 scale, with 1 being great and 5 being badly crashed, but I know of other s who use a 1-10 scale. I also jot down any unusual or severe symptoms. It just takes a moment, but having the numerical values for each day really helps me to look back to see what hurts and what helps.

Good luck with the new protocol -


alyson said...

Sue, I like your idea about keeping a calendar by the bed. That sounds a bit less intimidating than creating an Excel spreadsheet. Thanks for the well wishes, too. I'll be keeping everyone posted on my progress.