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. 

Goals for the New Year...

I've set the following goals for 2018. 

Stop my muscle loss completely, and start actually gaining muscle, so I can...

   • Ditch the wheelchair! Except perhaps for really long distances.
   • Go grocery shopping without using a mobility scooter.
   • Take a shower at least twice a week, without paying the price. 

End my stubborn, years-long chronic sinus infection, with the ultimate goal of improving, even restoring my overall immune function.

Improve my terrible digestion/gut function so I can expand my limited diet and eventually eat whatever I'd like, without the need for digestive supplements that I've taken for years.

All with the ultimate goal of returning to work.

Your one-time gift will help ensure the consistent care needed so that I can achieve these goals. Please click here for details!

What is ME/CFS?

Did you ever see the movie "Groundhog Day"?

The 1993 comedy starred Bill Murray as a cocky weatherman who's sent to Punxsutawney, PA to cover the annual Groundhog Day event. On the way he gets caught in a blizzard and finds himself stuck in a time warp, repeating the same day over and over again.

Bill Murray and friend, in Groundhog Day, ©1993 Columbia Pictures

Well, living with ME/CFS* is like a hellish version of "Groundhog Day".

While a minority of patients feel better in the morning, the vast majority typically wake up feeling close to death. A hallmark symptom of ME/CFS is 'unrefreshing sleep', and 'unrefreshing' is an understatement.

But as the day goes on, we may gain tiny bits of energy, to the point where by the end of the day, at least when moderately ill, we may feel almost normal -- say 60-70% normal -- for maybe 2-3 hours. Not as much pain, neuropathy, muscle weakness, etc. Feeling like there's some hope. 

Then, just like in the film, it starts all over again. We wake up feeling like we ran 10 miles during the night on no fuel and got hit by a semi-truck at the end of the race -- i.e, feeling like we're dying, with absolutely none of the 'energy' before we went to bed. And this happens over and over again, every day, for years on end.

And if it gets really bad, then one can become bedridden, and often unable to tolerate any sound, light, and even touch, so that one's life truly becomes a living hell.

My friend Brian Vastag, a former reporter for the Washington Post, did a much better job describing what it's like to have ME/CFS in this article for the Atlantic 3 years ago.


From the Centers for Disease Control:

• While symptoms vary from person to person in number, type, and severity, all CFS patients are limited in what they can do to some degree. CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD), and similar chronic conditions.  
• CFS often affects patients in cycles: Patients will have periods of illness followed by periods of relative well-being. For some patients, symptoms may diminish or even go into complete remission;  however, they often recur at a later point in time. This pattern of remission and relapse makes CFS especially hard for patients to manage. Patients who are in remission may be tempted to overdo activities when they're feeling better, but this overexertion my actually contribute to a relapse.
• The percentage of patients who recover is unknown, but there is some evidence to indicate that patients benefit when accompanying conditions are identified and treated and when symptoms are managed. High-quality health care is important.

*ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The former represents the scientific name, while the latter a dismissive term coined in the 1980's before researchers realized the seriousness of the illness. ME/CFS is considered a transitional name between the two.

How You Can Help!

Specific Needs & Estimated Costs

Your donations will help cover things not covered by Medicaid, including:

Consistent, monthly doctor consults:
Dr. R's initial consultation fee: $210
w/twice-monthly (for 3 months), then monthly follow-ups: $90-180
Plus any prescribed tests, drugs or supplements not covered by Medicaid. 
One of the tests he finds very helpful is the Organic Acids Test ($299.00)

Supplements (from $8.19-$29.00) that are helping like:
B12 (Adenosylcobalamin/Hydroxycobalamin)
Co-Enzyme Q10
Branched-Chain Amino Acids
Folinic (not folic) acid
Niacin/Niacinamide
L-Carnitine
Pancreatin
Omega-3 DHA
Lactoferrin

And specific individual strains of high-dose probiotics based on test results.
(These are very important -- est. $150-200/month)
I'll write more about why in future posts.

Compounded Nystatin:  $40 for one week's course, x 8 weeks.

And because I live 100 feet from a highway, I need a medical-grade air purifier ($366.03) along with replacement filters ($167.60). I'll be writing a future post about how I accidentally discovered how much pollution and soot was coming into my apartment, complete with shocking pictures that you'll really have to see to believe. 

And since I've lost so much muscle in my feet, I really need a pair of good slippers with arch supports. This brand is a little pricey, but has great, great reviews on Amazon.


Note: If you'd like to have your donation applied towards a specific need* -- say for example, towards doctor visits and/or follow-ups -- or pay for an item or items directly, please feel free to let me know by filling out the 'Contact Form' on lower right-hand side of the blog.

Why is a Fundraiser needed?

Every single person with ME/CFS I know who has improved significantly, gone into remission, or even recovered, used an integrative approach to do so. This means that sometimes antibiotics or antivirals were helpful, but also certain vitamins and minerals or often specific strains of high-dose probiotics. In some cases it was also necessary to address environmental factors that may have impacted their health.

I've been on SSI and unable to work for the last twelve years because of my illness. This means my income is severely restricted and thus Medicaid is my only insurance option.

The problem is, 90% of the interventions above aren't covered by Medicaid. Plus, like most doctors, none of the ME/CFS specialists accept Medicaid, whether they're local or even at prestigious clinics like Stanford or the Open Medicine Institute.

That's why this Fundraiser is needed.

Fortunately the Daniel J. Becks Special Needs Trust was set up by a dear friend to specifically raise funds to help pay for appointments, medical tests, prescribed drugs and supplements, and medical equipment that isn't covered by Medicaid.

I have no access to these funds. They are paid out by a Trustee specifically for medical care and treatment as mentioned above and by law, they cannot be used for any other purpose.



How You Can Help!

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