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!

Exciting News!

Thanks to your support, my health is definitely improving!

 

 

QUICK SUMMARY:

 

Even though 2021 was very challenging at times, I can say without a doubt that my health if definitely improving!  Thanks to your support:

 

I can walk farther, and without assistance!  (video below)

 

I can stand without pain for longer periods of time!

 

My severe night-time leg cramps have almost disappeared.

 

My bleeding gums have improved by 75%!

 

Edema/swelling in my feet has improved by 70%!

 

My blood pressure is consistently 10-12 points lower!

 

And my gastroparesis (delayed stomach emptying) is 40% improved!

 

 

IN DEPTH:

2021 wasn't all smooth sailing. I ended up in the ER with another scary retinal hemorrhage; had a short recurrence of c-difficile in September, and it took six months of red tape to get some of the gut and other testing approved and completed. 

And in hindsight, that 18 month long c-difficile infection in 2019-2020 really set me back -- by at least 4 or 5 years. But still...overall, I'm doing much better!

Let's start with the best news first:

I can walk into stores -- or the bank -- without the pain or almost instant worry that I used to feel. And once in side, I can stand for longer periods and then walk back out without my feet killing me!   

I haven't been able to do that in at least 7 years. 

A friend shot some video of me walking outside our building. And it's worth noting that I had to do this about five times because she accidentally kept turning the camera on, when she thought she was turning it off. But I was still able to do it without trouble.

A little slower than I'd like, and I can only do this a couple times a week, but I promise -- next spring...the 20 yard dash! 

 

Plus, once a week, I CAN CLIMB THE STAIRS to the 5th FLOOR and back!  I attribute this to several factors, including a special high-dose methylated form of folate, two different types of vitamin B12, the B vitamin biotin, and a great supplement called d-ribose. D-ribose is a naturally occurring monosaccharide found in the cells and particularly in the mitochondria, and is essential in energy production. It makes a definite difference, and studies show it works for people with ME/CFS. But also very critical to this improvement was something called brain retraining, which I'll talk about below.

 

 

 

 

I've suffered from severe leg cramps (and also 'restless legs syndrome, RLS) off and on for almost 20 years. Calcium helped, but I always had various side effects from calcium supplements. After a LOT of experimentation, I've found that adding powdered non-fat milk to my regular glass of milk, along with small amounts of whole sugar (to replenish glycogen reserves) has helped almost completely solve the issue. A huge, huge relief.

My gums don't bleed as much and my teeth are stronger. This is something I've been dealing with for about 12 years. I just couldn't seem to get any improvement, no matter what I tried. Well, now it happens maybe every 8th or 9th time I brush or floss, and when it does, it's minimal.  

The edema/swelling in my feet -- from venous insufficiency and 'protein calorie malnutrition' -- is better by about 70%. It got really bad last year while I was battling the c-difficile infection, and is still not good overall, but I'm excited it's improved so much in my feet...a good start!

My blood pressure is now lower by about 10-12 points -- sometimes 20 points! I attribute that to being able to eat more foods higher in potassium, plus adding potassium salt to my meals. The goal is to get it down to about 130/75 or so on a consistent basis...and we're getting close!

My digestion continues to improve. The gastroparesis (delayed stomach emptying) is better by about 40%. I can do a lot better though, in all of these areas, which brings me to the...

 

ACTION PLAN FOR 2022:

DIGESTION:

My digestion is better, but still needs a lot of work. The improving edema is a sign that my body is finally starting to utilize protein better, but again, that 18-month c-diff infection set me way back -- so even though I'm walking more, I have a LOT of lost muscle to regain.

Also, I had a gut test done that measured the bacterial diversity of my microbiome, and...well, I flunked. Even after all those different probiotics and prebiotics I took for the c-difficile infection, 8 months later, my overall diversity was 'Low'. This was due in large part to my still considerably restricted diet. I can tolerate more foods, but not enough of the type that help improve bacterial diversity. And improving bacterial diversity will help improve so many things!

Fortunately, I've found a nutritionist who knows a LOT about some of the very specific issues I've been dealing with, having overcome some of them himself. Naturally, I was excited to find him, and with your help, look forward to working with him as soon as possible.

I'm confident the next tests will come back much improved, which should translate to continued improvement not only in my digestion, but my overall health as well.

CHRONIC SINUSITIS:

My Achilles heel is my long-standing, chronic sinus infection. I wake up stuffed, feeling like death, like I mentioned several years ago. I feel "better" later in the day, but it never really goes away. I suspect it's caused mainly by allergies to dust mites or perhaps a fungal infection, etc., but regardless, it needs to be a major focus in the coming year, as no doubt it's contributing to both my fatigue and my gut and digestion issues. Many studies show that infections affect mitochondrial (energy) function.

BRAIN RETRAINING:

If one's been sick for a long time, it's very easy to get stuck in a hypervigilant 'fight or flight' mode, where the brain's limbic system overreacts to any sort of stressor. This can include infections, toxic exposures, injuries and...stress! It can become a vicious cycle, where everything is automatically 'seen' by the brain as a threat, when it may not be.

Over the last several years, increasing numbers of top ME/CFS doctors like Dr. Neil Nathan M.D. are finding that brain or "neural" retraining programs can help patients break that cycle by forming and strengthening new neural pathways that help calm down the brain's overactive limbic system so we can heal and get stronger.

These programs are controversial amongst fellow patients, who feel that any mention of neural retraining suggests that our illness "is all in our heads". Well of course that's not true.

The problem isn't psychological, but rather neurological. In fact, stroke patients use similar methods to rebuild their own neural pathways so they can regain the use of a limb that's been damaged as a result of the stroke.

I mentioned above how my own, crude version of brain retraining has played a role in helping to improve my walking distance. I also have a few friends who have improved using more detailed retraining programs. I'd like to commit to a similar comprehensive program to help accelerate my own recovery. Wouldn't that be great?

 

Once again, thanks to you, the pieces of this puzzle are finally coming together! 

I hope you're as excited about all of this as I am, and invite you to consider donating today, so we can reach our Winter Fundraising Goal and build on these improvements.

 

Your continuing support is critical and so very, very much appreciated!

 

Thank you so much!

  

 

 

p.s. I also did my first painting in sixteen years. A very small one on a card for my sister's birthday. After a couple of tries at some sort of landscape, I realized I'd need a lot more practice. So I loosened up and just attacked it with broad brushstrokes. She loved it.  :)

 

 

 

 

A 'new' car for Essy!

Success!

Thanks to all the wonderful, caring people who donated or shared the Gofundme link, my caregiver and friend Essy has a "new" car she LOVES -- all because of your kindness.

I'll try to post a few photos below, and hopefully a video 'thank you' from Essy, but have been having trouble with formatting. For some strange reason, 'Blogger' wants to put HUGE spaces between the photos at times, despite my protests. We'll see what happens...

As for Uncle Dan, I'm hoping to set up an appointment before the end of the month with the doctor, and will be seeing my regular medicaid doc next month. I'm definitely doing better -- slowly but surely -- and can't wait to tell you more!

THANK YOU ALL SO MUCH FOR YOUR SUPPORT!

Essy...

I know this past year has been a hard one for most of us. It was for me as well, but I’m doing better, thanks in large part to the incredible dedication and kindness of my caregiver, Essy.

 

Essy’s definitely a Can-Do person, and her attitude is rubbing off on me. Her answer to almost any request is a confident “Sure. I can do it.” 

 

Every Wednesday she cooks up nine meals, makes two loaves of pumpkin bread, and often does a load of laundry and changes my bedding. All in three hours, with no complaints.
 

 

She drives me to medical appointments, grocery shopping, and other errands, and is always patient if I ask if we can stop so I can take a photo or two. 

 

When we had that Day of Rain back in January, she called to tell me she was stuck. My cellphone signal was horrible, so I thought she was just running late. What I didn’t realize was her car – along with dozens of others – was indeed stuck because the street had flooded with over a foot of water.

 

Nevertheless, she left her car there and had her brother drive her all the way over here. If I’d known she was literally stuck, I never would’ve expected her to come, but that’s how dedicated and professional she is. 

 

But now she's in trouble and needs our help. 

 

Her car was stolen three years ago and trashed in the process. Ever since then she's been trying to keep in running -- replacing tires multiple times, brakes, etc. Three weeks ago her brake fluid light started beeping, and just last week her low battery light came on. It's clearly on it's last legs and if she loses her car, she could lose her job.

I've set up a 'GoFundMe' fundraiser for her in the hope we can help her so that she can at least find something dependable enough to keep her going for the next several years. 

Here's a link to the fundraiser -- Help Essy Help Others

 

Please donate today to help this amazing woman, and share the link with anyone you know who might be able to help. 

 

Thanks so much!

After a challenging year...

...some GOOD NEWS!

Quick Summary: Despite a very challenging year, my health is not only improving, it's improving in five different ways!  Thanks to your generous support:

My digestion is definitely improving. And as a result...

 

I can tolerate more foods.

 

I can tolerate supplements I've needed but couldn't take before.

 

My energy and strength are increasing again.

 

And I'm finally starting to sleep better, and longer.

 

 

In Depth: 

 

My digestion is definitely improving.  When one has a chronic illness, it's always good to get a second, third, or...fifteenth opinion. 

 

Medicaid recently approved six acupuncture visits per year. At my first visit in August, I asked the acupuncturist to review some of my past test results. 

He mentioned things pointed out by other docs, but also noted something the others had unfortunately overlooked: a 'very high metabolite' for c. difficile, the most common cause of infectious diarrhea.

 

My digestion has been terrible since I was first diagnosed, but especially bad for the past 18 months.  I didn't mention the diarrhea because it would get better, then worse, then better again. I kept thinking I was getting it under control. But I wasn't.

Once I learned what was causing it, I went from having the Big D five days a week, to maybe five times in the last three months. A HUGE, HUGE improvement!

And as a result, four other pieces of the puzzle are improving as well...

 

I can tolerate more foods.  It's very common for patients with ME/CFS to develop sensitivities or intolerances to various foods or food compounds. A good friend of mine was down to ONE food --  eggs -- for nine months before he was able to start turning things around.

I started reacting to foods high in oxalates and salicylates about 10 years ago, and more recently, to high histamine foods. This led to a very restricted diet and decreased caloric intake.

Thankfully, that's beginning to change. In two months, I've gone from eating the same six or seven foods every day -- to twelve!  Although my gastroparesis is still an issue, I'm actually feeling hungry at times, instead of just eating because I know I should. 

 

As a result, I'm getting more calories, about 300 more per day. The doc says in order to stop my muscle loss I'll need to increase that to 700-800, but after ten years, it's definitely a good start.

I can also tolerate supplements I've needed, but couldn't take until now.  Those dietary restrictions really messed up my metabolism. I developed sub-clinical scurvy, sky-high triglycerides, high 'bad' cholesterol and low 'good' cholesterol. But now that I can tolerate them, these issues can finally start being addressed.

My energy and strength are increasing again.  Both took a huge dive over the summer as the c. difficile got worse and worse. With that bugger under control, I'm definitely starting to feel better.

And last but not least, I'm finally starting to sleep better, and longer.  Ironically, one of the main symptoms of this 'fatiguing' illness is unrefreshing sleep. Most ME/CFS patients never get any REM sleep, let alone manage to sleep for even thre or four hours. Some go days without sleeping, even with heavy drugs. 

My sleep was really poor, but that's now improving as well. I've had more nights where I've slept for seven hours straight, and a few where I almost slept EIGHT hours. For me, that's huge!  Multiple studies show a connection between poor sleep and impaired immune function, so improving my sleep quality is bound to help my overall condition.

 

In summary... 

 

After 18 months of horrible digestion, things are back on track and looking up. Long-standing issues are also starting to resolve after years of dysfunction. 

 

The Doc is still tweaking my thyroid dose -- which could also explain some of these improvements -- and wants me to start testosterone (which tested very low) but we're trying to increase calories first.

 

Thanks to you, the pieces of this puzzle are coming together!

 

I invite you to consider donating today, so we can reach our Winter Fundraising Goal and build on these improvements.

 

Your continuing support is critical and so very much appreciated. 

 

Thank you, and stay safe!

Definitely a GAME CHANGER...

GOOD NEWS! 

The heavy metal provocation tests revealed no arsenic toxicity.  Lead was elevated, but not enough to be considered a problem, so I won’t have to take that chelation drug for months and months.

And while the pituitary hormone levels were within the normal range, my thyroid numbers were not.  Over the years it’s been gradually slowing down, and now is within treatable range.  So the doc has started me on low-dose natural thyroid, which is starting to make a definite difference.

The improvements so far include:

I’m not as weak, and not as unsteady moving about apartment.

Muscle cramps have reduced by 90%, muscle twitching by 70%.

A little less swelling (edema) in my feet.
  
Digestion is starting to improve. I’ve been able to tolerate some of the antimicrobials that I couldn’t last year, and have also been able to add some new foods to my diet.

And these improvements have remained consistent for the last three weeks.

There’s also a negative, but I actually think of it as a ‘positive’ as well.

My latent, chronic sinus infection is flaring big time, but that may be due to the thyroid glands effects on immune function, which is ‘dysfunctional’ in ME/CFS.  I’ll ask the doc if increasing the dose might help gradually clear this, as it has in other patients.

Now this is probably about a 5-10% improvement, but it’s lasting and consistent, so I’ll take it. It took me 22 years to get this sick, so I know I can’t expect to turn this around instantly.

Unfortunately, funds are getting quite low due to the various tests, drugs and office visits not covered by Medicaid. Also, the price gouging during the lockdown was incredible, with some supplements almost doubling in cost.

I invite you to consider donating today, so we can together reach the Summer Fundraising Goal, and I can continue seeing this specialist and build on these treatments that have been so helpful. I know these are challenging times for everyone, so whatever you can give is always appreciated.

THANK YOU FOR YOUR TREMENDOUS SUPPORT!

 

The Coronavirus Conundrum...

What a difference a couple months makes.

I hope you and your loved ones have been able to stay safe. No doubt everyone reading this has felt the effect of the coronavirus epidemic in one way or another. 

We've had four cases here in my building, but all are home now, and three have recovered. One woman was severely ill and had to be on a ventilator for over 2 weeks, and although she's been home for about 10 days, she's just now beginning to get some strength back.

The rules have been really strict here -- no visitors -- we can't even visit our fellow residents. Hopefully that's paying off as we've had no new cases in six weeks. 

It still feels like we're in Twilight Zone territory, and because of so many necessary restrictions, I was not able to get in to the Medicaid clinic so they could run the tests Dr. Geiger requested until just last week. 

As you can see, the typically busy street outside the clinic was a literal Ghost Town, with the exception of the photographer and his reflection in the parking meter. 

It also took longer than usual to complete the pre and post-provocation tests for arsenic (and other heavy metals) that was sent to a separate lab that specializes in heavy metal analysis.
 
I was hopeful that potential arsenic toxicity may be a piece of my ME/CFS puzzle. But after the hellish experience of the six-hour urine provocation test, I now hope it's NOT an issue. That test had to be one of the most grueling I've ever endured, and the side effects lasted for about 2 weeks. 

I have the follow up with Dr. Geiger next week and am counting the minutes until I can speak with him again.

Thanks to each and everyone of you for your support and patience!