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!

The Big Day...

January 4^th, 2019 was the big day -- the appointment with the doctor who helped me back in 2016 when it seemed like no one else could.

Back in late October I'd sent him past lab results along with a detailed history for him to review, and also submitted some new testing. Unfortunately he had a long waiting list, so I was unable to book an appointment until early January.

It's amazing how things can change in just a few months. I was hanging in there until about six weeks ago, when a variety of unexpected stressors took a large toll. So after a really rough December, I was literally counting the hours to the appointment. 

I was not disappointed.

"My job is to change everything."

As many of you know, I've tried many different protocols over the years. Some had been relatively successful in the past, but over the last 6-7 years, well, not so much.

As I lost more muscle and became weaker and weaker, I also became more and more desperate -- and as a result -- grabbed at almost any straw where there seemed to be evidence or even anecdotal reports of benefits.

And that's a problem.

First of all, of course I'm not a doctor. Secondly, what works for one person may not work for another, and could even make them worse. And lastly, if one's taking a lot of different things at once, how do you know what's helping and what isn't?

Dr. R told me he's had his own health challenges from time to time, and from experience found out that the answers were always surprisingly simple. “But,” he added, “when you have a thousand choices, something simple’s not that easy.”

So we'll be (almost) starting from scratch. He even wants me to cut back on things I think may be helping -- or stop them all together -- at least for now. I was hesitant at first with regards to a couple of specific things, but if they were truly helping, I'd be doing a lot better. He said "You will be better. But my job is to change everything."  

In my next post I'll talk about his plan to do just that. And how it's already actually starting to help!

Thanks again for your support! 

The Storm before the Calm...

I have to say it's been a really rough 2-3 weeks. 

I'd developed some bizarre eye symptoms back in early October -- sudden arc-like flashes (both dark and light) at the very top of my vision which my medicaid doctor thought might be the beginning of something called 'vitreous detachment'. The vitreous fluid is a gel-like substance inside one's eye.

While this detachment can be a normal sign of aging, it can also become very dangerous if larger floaters and black spots suddenly appear, which happened the day before my birthday, and got worse during a birthday party 2 days later. When this happens it can mean that the vitreous is pulling on the retina and cause a retinal detachment, where the worst case scenario could mean partial blindness.

So I got in a few days later, and sure enough they found a retinal tear. Got me into laser surgery to kind of seal it off right away. That was extremely uncomfortable, esp as the doc was trying to get me to 'Look left, look left, LOOK LEFT!'. I mean, if I could look any further to the left I'd be a chameleon. Plus, it took a LOT of energy to do this and well, it just wiped me out.

A week later I went back in for the followup. Naturally I was scared to death I'd need to undergo more treatment (the floaters are still there, but hadn't spread). 

After some poking & prodding, doc says the left eye is "doing good. You even having some scar tissue starting to form." That was a relief. Just had to wait for my shuttle taxi ride home, which I was told would arrive in about 20-30 minutes.

What started out as a pleasant wait, turned into a not-so-pleasant two HOURS. So what to do? What else, except wait in the lobby and watch the people 'Walk on By'.

After leaving at 1:30 for the appointment, I finally got home at around 7pm. Only to realize about a half an hour later that I left the umbrella I bought the day before, in the cab.  You know how that song goes..."It's That Time of Year..."  

The storm continues, but there are definite silver linings. It's been really rough -- could hardly walk just a few feet during the last 2 days -- but I've learned new things from this storm, which will help me get well.

In the meantime, as I count the days to my first consult with the new doctor on January 3rd, I thank you for taking the time out of your busy day to read this post, and wish you all the best during the holiday season.

On this Thanksgiving Day...

When I was a kid, Thanksgiving was my favorite holiday. But not for the right reasons. 

It was my favorite because of all of the food -- the turkey, mashed potatoes and gravy, the stuffing, yams, and of course, pumpkin pie.

Was I thinking about the things I should be grateful for?  Well, perhaps for a minute or two, but mainly it was all about the food, the family, and maybe the games after we woke up from our brief trypto-naps from all that food.

 

And I must admit that after I got sick, it was difficult to feel grateful for too much, especially after I became housebound. I missed so many family get-togethers that one holiday blurred with the next, and every day was just another day.

But, there's a silver lining in every cloud, for if I hadn't become so ill, I probably wouldn't have realized how much I do have to be thankful for.

I'm thankful to friends and family over the years who helped me pay my rent when I ran out of money before I was approved for SSI; for the friend who helped drive me down here so I could apply for the low-income apartment I've now lived in for the last 5 1/2 years; for the new friends I've met here who helped me when I became housebound in 2014 and continue to help in so many ways. I'm grateful to my ME/CFS friends who were there for me when I thought I wouldn't make it.

I'm especially grateful to a handful of friends/family who have stuck by me with friendship and support throughout my illness. You know who you are. 😇

And now this year... 

 

I'm so very, very grateful to all of you who have helped me raise enough funds so I can finally start to see the doctor who helped slow down my decline back in 2016.

That's right -- thanks to your compassion and generosity, I now have an appointment with Dr. R. on January 3rd, 2019! 

Thank you. I'm alive today because of you.

I hope you have the Best Possible Thanksgiving.
May you be filled with Gratitude on this special day!

The Importance of Clean Air...

Study after study has shown that clean air -- both outside and inside -- is a critical factor in good health. 

I often post photos on Facebook of the beautiful scenery right outside my living room window. The trees, birds, and beautiful cloud formations. 

And yes, it's a beautiful view, one of the things I really like about my apartment.

But what I don't usually show is the fact that there's a major four-lane thoroughfare about 100 feet from my apartment and a major highway about four blocks east.

Air pollution: Altered immune function, impaired cognitive function, and mitochondrial dysfunction.

Of course some folks may not be affected by this pollution, but many can be, considering that many studies have shown how pollution can alter immune function. This is even more important if one has ME/CFS, which studies have found is characterized by an imbalanced or dysfunctional immune system. 

Traffic-related air pollution has also been implicated in impaired cognitive function in several studies;  here, here, here, and here. My ability to concentrate has definitely worsened in the last 4-5 years.

As noted elsewhere on this blog, the leading hypothesis from recent studies is that mitochondrial function is impaired in ME/CFS, resulting in problems with energy production in every cell of the body.

Pollution also damages the mitochondria and impacts mitochondrial function. There are quite a few studies backing this up, but here is one, and another.

A picture's worth a thousand words...

Back in 2014 I bought a cheap air ionizer. I wasn't sure if it was helping, but it did make the air close to it smell very clean, like the outdoors. I didn't realize the air coming in my apartment was so dirty until one day when I happened to brush up against a cloth wall hanging that was directly behind it.

As they say, a picture's worth a thousand words. Here's two...

I knew this area had higher levels of pollution, but still, I was stunned. Perhaps I shouldn't have been, considering how dirty the windows and window screens get after only a few months. Note the paper towel is that black from only one wipe of the window screen.





A year later I was given a medical-grade air purifier as a gift. I didn't realize how effective it was until I sold it about 2 years ago to help pay bills. I wasn't sure if it was helping. Now I know it was, as in hindsight, my sinuses have been really bad ever since.

(A 2003 study by Alexander C. Chester, M.D., clinical professor of medicine at Georgetown University Medical Center, found that "Sinus symptoms were nine times more common on average in patients with unexplained chronic fatigue than the control group.")

Of course I can't control the air quality outside, and can only clean it so much inside. 
But the unit I had -- the Austin Air Healthmate Jr. --  is a medical-grade unit that helps to remove a wide variety of particles, sub-micron particles, chemicals, gases, micro-organisms and odors -- including dust (which is also a real problem here thanks to wall to wall carpeting), mold, pollen, tobacco smoke, chemical vapors, viruses and bacteria.

Removing or reducing these compounds will help me tackle this chronic low-grade sinus infection and in doing so may even improve my overall ME/CFS at the same time! It should also help reduce my cognitive dysfunction ('brain fog') that has definitely worsened over the last 4-5 years.

Note: If you'd like to have your donation applied towards this air purifier, please let me know by filling out the 'Contact Form' on lower right-hand side of the blog.

Thank you!

I'd kill for the flu...

Well, not kill.
  
I know this will sound bizarre -- and while I wouldn't wish it on anyone else -- I really wish I could get the flu. 

I haven't had it since I came down with ME/CFS nearly 20 years ago. And if you ask other patients, the overwhelming majority haven't either.

Why in the world would anyone want to get the flu and feel even achier and uncomfortable, with the high fever that goes along with it?

 
Because we never get that a 'real' fever. 

A real fever that indicates a normal immune response.  

We never get a prolonged high fever that helps eradicate or "burn off" something like a flu virus. Or a even a cold virus, or bacterial or fungal infection.

Instead, our body temps tend to run about a degree lower, and we get 'flu-like' reactions, with maybe tender or swollen lymph glands, and perhaps even a brief strong fever -- but it never lasts for more than a day or two.  

Thus various infections are never fully dealt with and instead of being sick for 2-3 weeks, we're sick for 2-3 years, or sometimes even 2-3 decades.  So if we ever got the actual flu, as odd as it sounds, it would be a cause of celebration, as it would show our bodies are mounting a normal immune response!

As I look forward to consulting with Dr. R., I've been making a list of topics to discuss with him, and this 'immune dysfunction' that comes with ME/CFS is at the top of the list.

The worst advice...

Like many other patients, I've received some terrible advice over the years.

In hindsight, I can kind of understand why, especially early on -- as I'd have good days and then bad days. Days where I'd appear completely normal, followed by days, even months of severe weakness and pain.

I wasn't quite sure what was happening myself, and because I was still working and needed to appear as professional as possible, I'd often hide that pain and weakness behind a smiley facade. So I guess I can kind of understand how some might think I wasn't really sick.

But others knew better, because eventually I had to tell them why I couldn't do 'this' or 'that'. Even after I ended up in the ER and had been sick for years, my two bosses were particularly clueless and/or mean-spirited.  One would actually laugh in my face when I tried to describe how difficult things were becoming.

So what was their brilliant advice?  Swimming.

Yup, I just needed to exercise more. After all, it had helped my boss's depression when his antidepressant stopped working. That, and a month-long vacation in Malaysia.

Yet not only do ordinary people believe this, but doctors do as well, with often tragic consequences.  Especially in the UK, where such ignorance (based on the flawed 'PACE' study) and lack of treatment options under the National Health Service has actually led to the death of many patients. 

But seriously, exercise?  Simple, common sense would suggest that if one has trouble walking, or even standing, that the last thing that would help, would be more exercise. And really, if a simple exercise program was the cure, NO ONE WOULD BE SICK.

End of rant. 

Fortunately, a whole slew of recent studies has shown actual biological abnormalities in patients with ME/CFS.  Here's a concise recap of the studies by Rochelle Josyln. 

A Magic Pill for ME/CFS?

Isn't there a drug or drugs for ME/CFS?

Unfortunately, there's currently no magic pill for this devastating illness. I wish there was!

But with the exception of some specific antibiotics, antifungals or antivirals, for the most part, drugs have not been the answer for patients withe ME/CFS. 

Thanks to a recent groundbreaking study, we now know why -- a great many of them interfere with mitochondrial (cellular energy) function, which is the last thing we need.

According to the study's lead author, Robert Naviaux:

"Many antibiotics like tetracyclines, erythromycin, and the fluoroquinolones (eg, Cipro), and antivirals like acyclovir, fialuridine, AZT, and ddC also inhibit mitochondrial functions when used chronically (usually for more than about 3 weeks). Chronic use of these drugs can do more harm than good if there is no longer good evidence for an active infection. When mitochondrial functions are critically impacted by long-term use of certain antibiotics, a ripple effect in metabolism and gene expression is produced that can further impair energy production by mitochondria, converting an active cell danger response that occurs during active infection to a hypometabolic survival response."

Now maybe someday there will be a 'magic pill' -- there's certainly a lot of great research going on lately* -- but I'm not holding my breath. I can't afford to. If something should show real promise, it will still require several clinical trials and thus probably take at least 10 years to get approved by the FDA. 

Instead, I need to follow the path that others I know have used and are using, and that's an integrative approach, working along with the doctor who helped stop my decline. 

*Above, the team of scientists from all around the world, brought together this past August by the great Ron Davis at the Open Medicine Foundation’s Community Symposium on the Molecular Basis of ME/CFS.