Monday, August 22, 2022
Temporary SETBACK...
THE THREE MAIN CAUSES.
Tuesday, November 23, 2021
Exciting News!
Thanks to your support, my health is definitely improving!
QUICK SUMMARY:
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.
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!
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.
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!
Saturday, April 3, 2021
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!
Tuesday, March 2, 2021
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!
Monday, November 23, 2020
After a challenging year...
...some GOOD NEWS!
In Depth:
And as a result, four other pieces of the puzzle are improving as well...
In summary...
Your continuing support is critical and so very much appreciated.
Thank you, and stay safe!
Tuesday, June 9, 2020
Definitely a GAME CHANGER...
GOOD NEWS!
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.
Tuesday, May 12, 2020
The Coronavirus Conundrum...
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!
Wednesday, March 11, 2020
A Game Changer?
But here's the game-changer: I had surgery back in 2005 to remove a pituitary tumor that was pressing on my optic nerve. The specialist is concerned that either the tumor or the necessary surgery may have left me with diminished pituitary function and that an endocrine (hormonal) disturbance could possibly explain my current condition.
In Depth: The appointment went really well. I was impressed that he questioned almost everything I brought up, because it showed that unlike some docs I've seen in the past, he truly wanted to get to the bottom of this puzzle, rather than just handing out any treatment or protocol his patients insist on.
He was skeptical at first about the vitamin C / scurvy / possible arsenic connection, but after examining those corkscrew hairs on my legs and noting how I’ve been taking ‘C’ for years now with absolutely no improvement, he agreed it’s worth investigating.
He also thinks that it’s worth trialing a systemic antifungal for 2-3 weeks — or possibly longer — due to my symptoms flaring whenever I have even the slightest bit of sugar.
And then his jaw dropped open...
As the appointment was wrapping up, I asked him if he thought it might be worth running new thyroid tests, as like most ME/CFS patients, my body temp is always on the low side. Really low.
One of the organs that regulates thyroid function is the hypothalamus. When it senses low levels of thyroid hormone, it responds by secreting TSH Releasing Hormone (TRH), which alerts the pituitary to produce thyroid stimulating hormone (TSH).
Because studies have shown the HPA axis to be dysregulated in ME/CFS, I mentioned the surgery I had back in 2005 to remove a tumor from my pituitary gland, wondering aloud if perhaps the tumor formed because my hypothalamus was overproducing TRH to help my thyroid function.
The doc's jaw dropped open. "You had a pituitary adenoma?"
Indeed I had, after an eye exam showed my peripheral vision was really bad (the tumor was pressing against my optic nerve). I had surgery to remove it, and then three MRI's over the next 5 years to make sure it was gone.
Why is this a potential game changer?
Quoting the doctor: "I am concerned that the adenoma, or the surgery, may have left you with diminished pituitary function. I am not questioning the need for surgery, but simply recognizing that as an important time point in your health history and that an endocrine disturbance is a possible explanation for your current state of health."
He asked if they'd done any other hormone testing before or after the surgery. They hadn't.
So then it was my turn to pick my jaw up off the floor. Could it be possible that something may have been missed fifteen years ago that may have improved my health, but was missed? Well, if that is indeed the case, I can't turn the clock back -- all I can do is go forward and be grateful that it was found now.
Plus, as has been discussed many times on this blog, it's possible that even if there are some hormonal issues that can be addressed, it's probably more likely that there isn't one single cause for my ME/CFS, in other words, different pieces of the puzzle.
Anyway, I have a follow-up scheduled on March 20th and am very eager to move forward on addressing what may be two huge factors: the possible arsenic toxicity inhibiting energy, immune and digestive functions -- and depleting my vitamin C levels -- and any hormonal imbalance(s) related to my pituitary gland.
I couldn't have done any of this without your help, and for that I'm eternally grateful.
p.s. Although it can be overwhelming at times, I trust you're taking every possible precaution to keep yourself and your loved ones safe from the coronavirus. As stress can affect the immune system, please try and stay as calm as possible in the coming weeks and months...
Wednesday, February 5, 2020
Arsenic and Old Rice...and...
Perhaps quite a bit. It may not only be a huge piece of the puzzle regarding my primary illness, but it also could explain why I've been unable to resolve an 8-year long battle with subclinical scurvy (vitamin C deficiency) despite taking 1,000+ mgs of vitamin C a day. The good news is I'll be seeing a specialist next week to determine if there's a connection, so this can be addressed once and for all.
Arsenic...
Arsenic poisoning. I know, sounds like something out of an old play.
Actually, arsenic toxicity, even at low levels, is connected to many different diseases and health conditions, including diabetes, peripheral vascular disease, non-alcoholic fatty liver disease, and has even been misdiagnosed as muscular dystrophy.
And when it comes to ME/CFS arsenic can become a problem because it not only suppresses immune function, it inhibits lipoic acid which is an essential co-factor for the mitochondrial enzyme pyruvate dehydrogenase, which has been found to be impaired in patients with ME/CFS in a groundbreaking 2016 study.
The good news is that there are patients who have recovered after they found out that their arsenic levels were high. 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.
...and old Rice...
Elevated levels of arsenic are typically found in contaminated groundwater, and for decades inorganic arsenic was used as a feed additive for chickens, but that was stopped in 2016 after studies showed elevated levels which resulted in public outcry.
But it's still found in elevated levels in rice, depending on cultivation and irrigation methods, as well as fertilizers used in different parts of the world.
WHY MIGHT THIS BE IMPORTANT IN MY CASE: And ever since I tested 'mildly' positive on one of four gluten intolerance tests back in 2007, I've been eating rice or rice-based products on a daily basis, at almost every meal.
...and Scurvy?
I haven't talked about it much, but yes, Uncle Dan has subclinical scurvy -- vitamin C deficiency -- and I've had it for almost 8 years now, despite taking 1,000-1,500mg of vitamin C/day. I have all the symptoms: bleeding gums, loose-ish teeth, weight loss, pain in the muscles and joints, and even the classic 'corkscrew' hairs on my legs.
Note the twisted 'corkscrew' hairs on my leg. A classic sign of scurvy. |
Most think of scurvy as a disease of the past, but it's become increasingly common today, mainly because of poor or restricted diets. They're put on vitamin C and their scurvy typically clears up in 2-3 weeks to a month or two. So why hasn't mine?
I discussed this with Paul Jaminet, a man who discovered he had scurvy while battling (and ultimately recovering from) an MS-like illness. He said that vitamin C will become depleted unless it has other specific antioxidants to help recycle it. And because arsenic depletes and/or inhibits these antioxidants, that may explain why I've been unable to resolve the scurvy taking a lot of vitamin C.
Fortunately, thanks to your support, I've found a local specialist with experience using science-based testing and treatments for arsenic and other heavy metal toxicity. I'm looking forward to my first appointment with him next week and will post an update as soon as possible.
Thank you again for helping to make this possible!
Sunday, December 22, 2019
Silver Linings...
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! |