Tuesday, June 9, 2009


I'm now four months and almost three weeks into Valcyte, nine months into the Simplified Methylation Protocol, one week on lamictal, and one day doing the Amygdala Retraining.

I've been noticing some improvements, small, but noticeable. I'm able to sit up more hours during the day. I find I'm not automatically lying down which is what I used to do. My crashes are lasting as long. The swollen lymph node on the back of my neck has decreased considerably. My stamina is a tiny bit better. The muscle pain is, for the most part, gone as is the tendon pain I was having. I haven't had a really bad headache in a few weeks.

My remaining symptoms seem to be consistent with dysautonomia as well as problems with the HPA axis. These two problems are biggies though and quite disabling so I'm anxious to find treatment for them. I'm already on 5mg of hydrocortisone to address the hypoadrenia but its not doing the trick. I still have a dark line along the front of my neck. I still have tachycardia, dizzy spells, and fatigue.

Today I woke up feeling bad physically and emotionally. I was dreading the day. I did the first session of the Amygdala Retraining. It helped in a couple ways. First doing the exercise shifted my thinking from negative thoughts to more positive ones and it must have calmed my nervous system down a little bit. I was overdo for my blood draw by about a week. This morning I thought "there's no way I'll be able to get out to the lab" but after listening to the DVD and doing the exercise I noticed I had 30 minutes to get to the lab before it closed. I got my stuff together, put my shoes on and left. It was fairly easy. I actually left the house rather spontaneously rather than trying to figure out if I was well enough to go out. I thought back to four months ago when I went for my first blood draw-I was woozy at every stoplight, and woozy in the waiting area. What a difference between what happened today and how I was four months ago.

I have a long way to go. I feel like I'm in a complete restructuring process from my body to my entire mind and way of looking at things.

Its still not easy and the depression lingers but I feel very grateful for what I have in my life. I'm reconnecting with extended family that I'd lost touch with and that feels wonderful.

It takes discipline, patience, courage, and faith to have improvements.

I've been listening to Jack Kornfield "A Path With Heart" about meditation and find it helpful. I think until my mind is in a better place I need to keep it distracted and feed it good, positive things. I just remembered something from my post-doc fellowship. With depression they've found that a part of the brain actually shrinks in size. Also, research has shown that the amygdala is very involved in anxiety.

I'm on a slew of medications which is concering but hopefully I'll be able to reduce them at some point. This is my current treatment:

Valcyte 450mg twice daily to treat HHV 6 and EBV
Amantadine 100mg-to increase dopamine levels
Hydrocortisone 5mg-10mg for hypoadrenia
Armour Thyroid 30(?)mg
Gabapentin 300mg at night for sleep
Klonopin 1mg at night for sleep
Doxepine (liquid) 20 drops for sleep
Melatonin for sleep
Methylation Supplements: 1/4 Folapro, 1/4 Intrinsi B12, Perque B12, Neurological Vitamin, Phosphatidylserine Complex
High Quality Protein Powder
2000mg Buffered Vitamin C
Magnesium Malate
CoQ10 200mg
Liquid B Vitamins


mojojojo said...

I recall Dr. Enlander (in NY) saying that hydrocortisone should only be used short-term because it suppresses natural cortisol production. I've heard the same in many alternative circles (obviously) but hearing from a traditional MD gets people's attention.

If this is something you're concerned about, you might want to look into a good glandular and adaptogen even before you do the adrenal test. Adaptogen is tricky because it needs to be more targeted (I use muscle-testing) but glandulars are universally helpful.

From your list, I see you have sleep difficult as well. Much of this has to do with HPA axis, as I'm sure you're aware. If cortisol spikes at night, seriphos (soy-free phosphatidyl serine) can really help. I prefer to take the PC/PE and PS separately because of functional differences (PC is really good for binding neurotoxins and I take it with meals). Also, many of us have soy allergies/sensitivities so seriphos is a safer route.

Also, if you're not already doing this, my latest eval showed that I'm not absorbing my vits. I have been taking the neurological formula and folates with meals, so I'm switching to empty stomach.

I'm glad to see the amygdala training is beneficial. It certainly vibes with my belief that emotional conflicts need to be treated, and at the least get out of the emotional fight-or-flight zone. What better way than to retrain the memory of our emotional reactions??


Shelley said...

It is so completely thrilling to see a post from you in my reader entitled "Improvements."

Go team!

(Imagine that this fellow is also cheering you on.)