Two More Improvements, and one of them is HUGE...

QUICK SUMMARY:

 

In just two weeks since the last update, I've lost at least 1/4in around my middle. I know that sounds trivial, but after losing 2 inches a year ago, then stalling for the last 10 months, I'll take the improvement and go from there.

 

But more importantly, I have some big news about a problem I've been struggling with for over 11 years now, which relates to my digestion, my absorption of nutrients, and my muscle loss.

 

If this improvement continues, I'll know I'm finally on the road to real, lasting recovery.

 

 

IN DEPTH:

I foolishly used to think that all one had to do to lose weight was to just eat less. And perhaps exercise more. That is, until I started gaining a lot of weight around my middle, even though I wasn't getting anywhere near enough calories!

 

That started about 8 years ago. My waistline grew while I remained bone-thin everywhere else. In fact, I gained the most visceral (belly) fat during the 19 months I had that c-difficile infection in 2019-2020. It grew to 43 1/4 inches, so bad that my abdominal muscles actually started to separate, putting me at risk for a hernia.

Then about a year ago I finally started losing this stuborn fat. I lost 2 1/4 inches, and then it just came to a stop. Perhaps I've figure out what was helpng and what wasn't, but I can say with confidence that I'm touching 41 inches again, and am committed to make sure this continues. I'd be ecstatic if I could get down to even 38 inches!

The 2nd area of improvement is HUGE.

I don't think I've ever talked about this on the blog, because it's both weird, and disturbing -- but I haven't been able to take showers for almost 10 years now. It's not the showers that are tiring, it's the drying off afterwards.

Sometime in 2011, I noticed that my skin would shed or peel when I dried off after a bath or shower. Neither I or my doctors could figure it out.

 

from 2019

 

My skin would even peel off in microscopic amounts all day long, building up on drinking glasses, on my computer mouse, etc.. Bizarre, right? Here's a pic of my mouse, from 2017, after two or three days buildup.

But anyway, after a shower, I'd start drying off, and as I rubbed myself with a towel, the damp skin would just peel or shed off -- like a snake! Sometimes it would be quite bad and would wipe me out for a day or so.

So I started doing spit baths instead. Legs one day, then arms, and with help, my back. The skin would still peel off, but it wasn't quite so draining. Over time, this became the new normal.

Until last Friday.

I asked Essy to help wash my back. She gave it a good scrub for 10 minutes, along with my neck and arms. I always check by rubbing the skin with my hand -- and it didn't seem to be peeling off as much.

Essy confirmed this. Said it was much better, by maybe 75%! We always have to lay down a few towels to catch the skin, and sure enough, there wasn't nearly as much desquamation as usual! 

 

From 2019: This towel would be covered with skin, but it only shows along the top edge, because there was another towel laying on top of this one.

 

And from this past Friday. The whole towel should be covered, but it isn't.

Then washed my legs on Wednesday night and got the same results -- not anywhere near as much shedding!

THIS IS HUGE. It means I'm finally starting to digest, absorb and utilize protein better than I have in eleven years! Which means I'm not only losing less muscle, but should finally be able to regain much of what I lost, which means I should be able to increase my strength, my standing and walking time, etc.!  I can still hardly believe it, but I'll take it for sure!

Friends, I couldn't have gotten this far without your help. And we've already almost reached the halfway mark for the Winter Fundraising Goal!

Thank you again for your support, and my Very Best Wishes for a Wonderful Holiday Season!

Dan

 

Life Begins at...65?

QUICK SUMMARY:

 

After the severe setback earlier this summer, I was able to get back to about 75% of last year's improvement level -- that is until I was hit by a brutal sinus infection and stomach flu a week ago. Surprisingly, it just may help provide answers going forward.

As a result, I'm more determined than ever to take on this beast once and for all. I got close a year ago, and am confident I can far surpass that this year.

IN DEPTH:

 

The Improvements so far...

 

After the May-August setback, I went from hiking to the 5th floor twice in August, to six times in September and October -- which is actually more than this time a year ago -- and then five times this month.

 

from September 2022...

 

Since I used to run up the stairs when I was taking care of mom, I decided to try to start doing that again too -- but of course a lot slower and very carefully at first. I started early this month and have done it twice so far. Essy shot a video of the 2nd attempt.

Yes, it's slower, and only one flight, but it's a start.

Restarting specific supplements helped improve strength and mood, and also going to the old (low) dose of klonopin helped me settle down as well. I started a much tinier taper about a month ago and it's going okay.

My blood pressure continues to improve. It's consistently 130/75, instead of 149/88 or higher.

I do have some twitching in my feet and legs from time to time. That should improve as I get more calories. And I think I've had maybe ONE leg cramp since August, which is a new record!

 

 

LAST WEEK'S SETBACK...

and it's possible clues towards future improvements:

 

This recent sinus infection was a total surprise! As noted a few years ago, ME/CFS patients rarely get 'real, normal' fevers like healthy people do, and they rarely last more than a couple days before dropping again.

 

Well, mine shot up to almost 104 on day three, and lasted for five days -- the longest and highest fever I've had for 30 years. Perhaps it's a sign my immune system is beginning to work normally?

 

Things got a lot worse as it turned into the stomach flu. My doc's office was closed, so I ended up pulling out a bottle of an herbal anti-parasitical so I could at least stop the diarrhea.

 

It worked. Really well. Helped improve my non-existent appetite. And interestingly, it even cleared my sinuses by 80%.

 

 

So, what's THE PLAN FOR 2023?

 

1. Investigate the possible parasite factor.

 

I haven't had the time or energy yet to find an expert to consult with on this, but it's too intriguing to just ignore. Especially since it's helped my sinuses so much, which was #1 on last year's list.

 

2. Improve Digestion.

 

I mentioned working with an expert last year. I contacted him in March, but the setback hit me so hard, that we ended up putting it on the back burner. With your help, I hope to work with him very soon. 

 

3. Improve the diversity of my gut microbiome.

 

Below is a screenshot of my microbiome test done last year. The two main phylum in a health human are the Bacteroidetes and Firmicutes. Firmicutes (in orange) are associated with obesity while Bacteroidetes are connected to leanness.

 

 

As you can see, I have almost twice as much Firmicutes as I should. No wonder I've had such a difficult time getting rid of this fatty liver and visceral fat!  There are other factors too -- stress will mess up this ratio and deplete the microbiome in general -- but slowly changing the diet and adding very specific prebiotic fibers to improve the ratio will also be key.

 

There are other problems with the gut test I won't bore you with, but I hope to work with Dr. Jason Hawrelak -- one of the world's experts -- apply his advice, and then repeat the test next June. 

4. Brain Retraining

 

Lastly, although I made some progress, I need to get a lot more serious about brain-retraining. Anyone who's around me for long will tell you I worry too much. It's an automatic thing, perhaps due to being sick for so long, but...maybe it started earlier? Regardless, ingrained, subconscious patterns like that increase stress hormones which interfere with healing. 

 

I did consult with a practitioner for four sessions from March to April. And while the sessions went well, he seemed a little inexperienced, so we didn't make much progress. We also had wifi connection issues.

 

With your support, I hope to work with a more experienced practitioner this year.

 

 

IN SUMMARY...

 

My commitment to recovery/remission has never been higher.    I could say it's because I'm so sick of being sick. And I am. But this year -- in fact today -- all of a sudden I'm entering my 'Golden Years'! 

 

I even have an appointment with my doctor tonight. 

 

So I think the setback earlier this year, along with this recent severe infection, combined with my 'Medicare Birthday', all add up to one thing...

 

Once and for all, it's time to get well Dan, and that starts today. 

 

Remember? We got so close last year. 

 

Please consider donating today so I can surpass last year's gains and see more progress than ever before!

 

Remember, 100% of your donation goes to pay for medical appointments, tests, treatments, drugs and supplements not covered by insurance. They are paid out by a Trustee and by law, cannot be used for any other purpose. 

 

You can donate today to the “Daniel J. Becks Special Needs Trust” by clicking on the PayPal “Donate” button on the top right corner of the blog.  They accept Visa, Mastercard, and American Express, without any need to sign up with Paypal.  Or if you prefer, you can make a donation at any Bank of America branch (please bring the account number (#35137298) with you). Any amount you can give will be greatly appreciated!

 

Stay safe and take care friends. 

Thank you so much!

Twilight from the roof -- early October 2022.

 

 

 

 

 

 

 

 

 

 

 

Temporary SETBACK...

Quick Summary:

 

After several months of continuing improvement in 2022, my health started to decline 3-4 months ago.

 

I can't sugar-coat it. It's been really, really rough. I thought I'd hit rock bottom before, but this was rock bottom. I feel like I've lost all the gains I experienced in 2021. 

 

As depressing as that is, I'm doing about 10% better than 2 weeks ago, and I'm 100% confident I can regain what I lost. 

 

 

IN DEPTH:

 

I was doing so well last fall, and that improvement continued into 2022. My energy and stamina improved so much that I was able to hike up to the 5th floor twice a week every week, instead of just once a week. And it was easier each time.  

 

There were even days I even felt stronger in the mornings, which hadn't happened in almost nine years.

 

My fatty liver and bloated belly actually started shrinking for the first time in five years -- down to almost 41 inches from a little over 43 inches.

 

Then about 3 months ago, things started slowly getting worse to point where in early August I could barely walk the six feet from my desk to my kitchen counter.

 

It took almost 3 months to figure it out what went wrong, but I think we have. And while there are probably other factors involved, here are --

 

THE THREE MAIN CAUSES.

 

1.  I started a protein powder back in late February sweetened with organic maltodextrin. It helped me walk further and stand even longer than last fall by increasing muscle glycogen levels.

But in hindsight it came with a steep price. Studies, some as recent as this year, are showing that maltodextrin can mess up the gut. It increases the growth of bad bacteria while decreasing the good guys. It also increases intestinal permeability -- a factor involved in many health issues, including fatty liver. 

 

In fact, in hindsight my waistline stopped receding just around the time I started the protein powder. So about mid-June I stopped it, and within a week my energy levels tanked.  I'm currently trying to find other things to give me those lost 500+ calories, using foods I can tolerate. My caregiver Essy made some peanut butter cookies yesterday...so we'll see how that goes. Any suggestions -- please send 'em my way.  😛

2.  In an attempt to figure out what was causing the setback and/or the flareup of certain symptoms, I stopped several supplements during the last three months that in hindsight have always been helpful -- especially those two special forms of folate: folinic acid and methylfolate. 

Things would seem to get better, so I thought I was on the right track, but again in hindsight, they just got even worse. So I'm restarting these one at a time, with 4-5 days in between, so I can know for sure what's helping and what's not. The folinic is indeed helping.

3.  But perhaps the main cause of this relapse is I started tapering off of a nasty drug I've been on since 2005, called Klonopin.

 

Klonopin, and similar drugs like Valium and Xanax, used to be handed out like after-dinner mints. That is until they realized they can be habituating. Some even say addictive. As a result, they stopped prescribing them to new patients at medicaid clinics around 2013, and in 2020 the FDA finally put a black box warning on Klonopin and other benzodiazepines.

Klonopin has been prescribed for decades for ME/CFS patients because unlike Valium, it also has anticonvulsive properties that help both that restless "wired but tired" feeling, but also reduce actual muscle cramping and twitching. 

I had tried to taper off back in 2011-2012, and got down to 20% of my original dose. But my doctor at the time felt it was taking way too long, so she put me back on my original dose! 

 

This time I was feeling so much better overall that I thought, well -- now's the time to try again. I was certain it would be easier. 

 

So I contacted my current doc and started tapering again. This time however, we cut the dose too quickly, and my reactions became severe. But not right away, which is why it took so long to realize this was a factor.

My stress intolerance, anxiety and irritability all slowly but surely skyrocketed. I could NOT sit still, couldn't sleep more than 3-4 hours a night at best, nor nap during the day. I just could not settle down both mentally or physically. I started sweating profusely, itching all over, and was getting restless legs 90% of the time, even during the day. This has calmed down a bit, but it was sheer hell.

I suspect this almost complete inability to calm down helped exacerbate all the other symptoms and contributed to my loss of energy because I was burning up all my calories in that super-heightened state of panic. Stress plays a HUGE factor in chronic illness, so this faster taper clearly wasn't helping on any level.

Fortunately my current doctor is very understanding and has agreed to increase the dose back to that which I was taking up until May, then allow me to stay at that until I feel stabilized -- and then taper slowly from there.

I'm grateful that it didn't get worse than it did. Horror stories abound on the web of people quitting cold turkey, only to end up in the ER with full-body seizures, extreme anxiety to the point of paranoia and psychosis, and...worse. 

So from now on, slow and steady wins the race. 

Thanks as always for reading this update and for your amazing support. I'll be back in early November with BETTER NEWS, hopefully much better. Sound like a plan?

In the meantime I hope you've had a great year and are enjoying the summer!