The Plan...

Last month, I talked about my initial consult with the doc, and how he felt it was important that I start over with a completely new plan to help set me on the road to a healthy life.

So what is this new plan?

Well, it's one that I've never really tried in the 20 years I've been sick.

And that is to aggressively treat the chronic infections in my sinuses and small intestine.

Doc says these low-grade infections are not only creating digestion and malabsorption issues, they're poisoning my mitochondria and putting my body in a catabolic (muscle-wasting) state -- a state of metabolic acidosis.

The small intestinal bacterial overgrowth (SIBO) showed up on my Organic Acids Test, as did high levels of ammonia, which he said is a result of both the acidosis and the bacterial infection. The infection basically gets first pass at whatever I eat, so if I eat some chicken, the bacteria eat it first, steal the protein and then off-gas the ammonia. Ammonia is a toxin, but it's also alkaline, and so the body is trying doing whatever it can to correct the acidosis. But because it's not getting the nutrients it needs, my body is basically catabolizing itself to stay alive.

Also interesting was the marker for vitamin C was almost non-existent, despite the fact that I take 1,000 mgs of 'C' a day. He said the infections are basically 'draining' or using up all the C I'm taking in. 

So I'll be rotating 4 different antimicrobials (2 at a time) for the gut infection, along with 2 different herbal tinctures for my sinus infection. He also wants me to start a pharmaceutical-grade meal replacement formula once or twice a day to get more protein in and also help improve gut integrity and function.

Treating these infections will help improve gut function and digestion, lower the ammonia levels, gradually reverse the muscle wasting and improve energy levels.

And while some days are really a challenge, and mornings can still be hellish, I'm actually getting nasty stuff out of my sinuses I haven't seen in literally 20 years. 

Even though it's early, I've noticed I've been able to walk further on a pretty consistent basis without as many of the physical repercussions I'd typically suffer even just a few weeks ago.

I really like the doctor. He's direct without being patronizing and he's also genuinely encouraging at the same time. It's clear that he can tell that I'm one of those who 'overthinks' everything, so his directness is very helpful.

He also has a rather ingenious plan to help improve my sleep and restore a normal circadian rhythm which I'll post about next month.

Sidetracked...

A couple weeks ago it was my intention to post details about the doc's plan to help put me on the road to remission, and how I was feeling better even just by changing a couple of  things. 

For example, within less than a week, I was able to walk about 20% further, and one night (when my energy is typically 'better) I even walked up to the 3rd floor and back!

But then I got sidetracked...
 
Around 11am or so on Saturday, January 19th, I started having these weird sensations near my heart. Not pains, more like light, dull 'aches', every 4-8 minutes or so.

In the many years I've been sick with ME/CFS, I've had a lot of these weird sensations, just none of them so close to the ol' ticker.  I've had 'regular' palpitations in the past that of course disappear when I get to the doctor, but not the odd achey-breaky sensation of the other day.

So after about an hour and a half of this, I called 911. EKG was normal, but of course they always need to make sure everything's okay, so within 10 minutes I was off to the ER.

I was hooked to about 300 (well, maybe 299) wires, tubes, cables, and to make a long story short, after almost 4 hours, I was told all the tests came back normal, including another EKG, a chest X-ray, and 2 troponin tests.  The latter measures a protein that is elevated if one has a heart attack or any sort of damage to the heart muscle.

Now here's the weird part.

If there was a highlight during any of this, it was a reunion of sorts with a painting I did way back in 1989, which I sold to the Cherry Hill campus of Swedish Hospital in 2005. They ended up hanging it in the lobby of the same ER I happened to be at for the heart check. So after I was discharged, I went over to say hello to an old friend.

Anyway, I was back home by 8-ish -- and walked all the way in from the parking lot and up to my apartment without a walker, cane or wheelchair to lean on! -- and by 11pm, any weird chest 'pains' had disappeared. 

And even though I may look somewhat relaxed above, the entire ordeal though wiped me out big time. Didn't really hit me until the next day. 

And then by Monday morning I started getting a scratchy throat, which turned into a raging sinus infection by evening, and for the next 5-6 days I actually got a decent fever that bounced around 101-103.5. This will sound weird (again) but one of the goals in striving toward remission/recovery, is to get normal, real fevers. It shows our immune system is starting to work correctly again, mentioned here. So as craptastic as I felt, it was oddly encouraging that my fevers went so high and lasted so long.

Anyway, so now I have a follow-up scheduled with cardiology on February 7th, and even though I'm sure everything is fine, I've decided to wait until I get the all-clear from them, before starting the the doc's full protocol.

I'll post about it as soon as possible. Thanks for taking time out of your busy day to read this update!