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! 

A Game Changer?

Quick Summary: The specialist I saw agreed it's possible that dietary arsenic could be both preventing my scurvy from resolving, and my overall health from improving. 

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...

 

Arsenic and Old Rice...and...

Quick summary:  What in the world does arsenic and rice have to do with ME/CFS? 
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!