Silver Linings...

Hello friends,

I wanted to take this opportunity to thank all of you who have been so kind and supportive over the past two years. We're almost 2/3rds of the way to our Winter 2020 Fundraising Goal and I'm so very grateful for your uplifting assistance and generosity.

One of the silver linings of being basically housebound, is that I've learned to be more appreciative of the little things I took for granted for way too many years. This is especially important as focusing on one's health problems 24/7 can raise already high stress levels -- which of course is not good for anyone's health.

So whenever I'm able to get out, I bring my cell phone with me, and try to find the beauty in the world around me -- whether it's reflecting off the roof of a car in a grocery store parking lot, stopping on the way home to catch a sudden rainbow before it vanishes, or acknowledging that last rose of the season by the side of a road on the way to a doctor's appointment --  it's out there, all around us, even though it may be hard to see at times.

My wish for you for the coming year is that you're able to find time to stop and embrace the grace and magnificence that is all around us. 

If you look reeeaally close, you'll see Mt. Rainier just to the left of the center...

On the way to Snoqualmie Falls...

So fortunate to see the Falls last July!

HAPPY NEW YEAR!

Slow but Steady Progress...

Quick Summary:  After a surprisingly rough year, we're finally making progress. I need to build on that progress, by continuing to improve gut function, and by investigating two things that have never been properly addressed -- a possible h. pylori infection, along with the possibility that my mitochondrial (energy) function may be impaired by arsenic toxicity. 


In Depth:  The year began with a 'fresh start' -- a plan to tackle bacterial overgrowth in my small intestine, which sadly backfired. The resulting side effects took seven(!) months to resolve, but thanks to your support -- after tests and three appointments with 2 local doctors, and many trials of a variety of specific high-dose probiotics -- that part of my digestion is finally improving.

And that is huge. I'll write about that in more detail very soon in a separate post because it's a rather complex but very important piece of the puzzle. In fact, studies have shown that addressing these gut problems can actually lead to remission.


Because I was so distracted by the ever changing intestinal symptoms, I realized that a symptom that I've had during almost my entire illness has never been properly addressed. And that's the fact that I produce...

...almost no stomach acid.

Most people are troubled by excessive stomach acid. With me, it's the exact opposite. In fact, I cannot remember the last time my stomach growled with hunger. I've been prescribed treatments for it, but have never really addressed why it's not producing acid on it's own.

As always, all avenues will be explored. But the first one is to find out if I have an h. pylori infection. Now while an acute infection can raise acid levels, a chronic infection results in reduced stomach acid secretion. That means not only poor protein digestion, but also an increased risk for bacterial infections and the resulting overall poor digestion I've been experiencing.

I've also suffered with a severe vitamin C deficiency -- subclinical scurvy -- for about the last six years. This showed up about six years ago, and has remained despite taking 750 milligrams of C every day, over 16 times the RDA.

So what could be lowering the vitamin C levels?  Well, this study showed that vitamin C levels normalized following h. pylori eradication.

There's also a chance that normalizing vitamin C levels could improve my muscle wasting. Author Paul Jaminet, who had an infectious MS-like illness, discovered 12 years into his illness that he had scurvy, and it wasn't until he was able to correct that, that he regained the 25 lbs he had lost.

So investigating this possibility -- or anything else that may be causing the low stomach acid -- will be a huge part of the path going forward.  

Plus, is there an arsenic connection?

There have been patients who have recovered after they found out that for one reason or another, arsenic was building up in their bodies. One such ME/CFS patient was so sick, they thought he had HIV/AIDS, yet he recovered completely and is now living a full life. 

Why am I thinking it might be a problem in my case? Because ever since I went gluten-free in late 2007, I've been eating rice on a daily basis, at almost every meal!  Rice is well known to contain elevated levels of arsenic, which usually isn't a problem for most people -- but what if you've been eating it every day for 12 years?   

On the right -- arsenic in the mitochondria

Arsenic attacks the mitochondria, the energy-producing factories in every cell of the body. If arsenic levels remain elevated, every single cell eventually runs out of energy, until it's addressed and corrected.

And that's where I need your help. My plan going into 2020 is to focus on the three issues I outlined above, in order to determine if these may be factors that can then be addressed to improve my health.

I'm here today because of you. I've only been able to make progress because of your generous support. Please take a moment to consider a contribution to my Birthday Fundraiser so I can continue to see more progress in the New Year. 

Thank you! 

One step forward...

...one and one half steps back.

 

Quick summary: About 10 days after my last post, I had to discontinue the antimicrobials. The side effects surprisingly became just too severe and set me back almost 'two steps', which was really discouraging after such a good start. The good news is we've made some readjustments and after a couple of rough months things are starting to look up again.


In Depth: As noted in my last post, things seemed to be going quite well. That is, until March 5th, when I went up to the full dose of the prescribed herbal antimicrobials.

And then BAM! My sinuses dried out so severely, it was like my nose was full of cement. So while they may have killed the infection, it wasn't going anywhere because it couldn't. Even with the use of diluted saline sprays, it took several weeks to consistently feel a decent amount of moisture in my sinuses, and get things draining again. I still have problems from time to time -- I've always been on the dry side -- but it's definitely better.

But there were other factors in my downturn as well, and these took longer to decipher. In this post we talked about how the doc wanted me to basically start over from scratch, figuring since I was in such bad shape prior to consulting with him that the things I was taking couldn't have been helping very much.

In hindsight, that was a mistake. 

As noted on the first page of this blog, ME/CFS is a very complex, complicated 'puzzle', and while it's very important to look at the big picture, it's also wise to try to keep track of what might be helping and what isn't, which can be difficult.

But as I became weaker and weaker, I went back and looked at notes on my calendar from earlier this year and last year...and BINGO...there it was.

I had stopped the two different and equally critical forms of B12 that I was taking several times a week -- methylcobalamin and adenosylcobalamin. I also increased the folinic acid which he suggested I cut way back on. Within 2 days of restarting those, the severe cramping and muscle twitching in my legs diminished, and continues to improve on a daily basis.

I apologize for not posting sooner, but wanted to make sure these improvements were holding. Thanks again for your support and for taking the time out of your day to read this post!

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!

The Big Day...

January 4^th, 2019 was the big day -- the appointment with the doctor who helped me back in 2016 when it seemed like no one else could.

Back in late October I'd sent him past lab results along with a detailed history for him to review, and also submitted some new testing. Unfortunately he had a long waiting list, so I was unable to book an appointment until early January.

It's amazing how things can change in just a few months. I was hanging in there until about six weeks ago, when a variety of unexpected stressors took a large toll. So after a really rough December, I was literally counting the hours to the appointment. 

I was not disappointed.

"My job is to change everything."

As many of you know, I've tried many different protocols over the years. Some had been relatively successful in the past, but over the last 6-7 years, well, not so much.

As I lost more muscle and became weaker and weaker, I also became more and more desperate -- and as a result -- grabbed at almost any straw where there seemed to be evidence or even anecdotal reports of benefits.

And that's a problem.

First of all, of course I'm not a doctor. Secondly, what works for one person may not work for another, and could even make them worse. And lastly, if one's taking a lot of different things at once, how do you know what's helping and what isn't?

Dr. R told me he's had his own health challenges from time to time, and from experience found out that the answers were always surprisingly simple. “But,” he added, “when you have a thousand choices, something simple’s not that easy.”

So we'll be (almost) starting from scratch. He even wants me to cut back on things I think may be helping -- or stop them all together -- at least for now. I was hesitant at first with regards to a couple of specific things, but if they were truly helping, I'd be doing a lot better. He said "You will be better. But my job is to change everything."  

In my next post I'll talk about his plan to do just that. And how it's already actually starting to help!

Thanks again for your support!