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!

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!