CFS = Cardiomyopathy

Not a surprise but not fun to have affirmed, repeatedly. This is my current focus in the interest of … drumroll … longevity! Life has definitely kicked the challenges up a notch here with my health.

“CFS Compensates for Idiopathic Cardiomyopathy

“Let me first of all define heart failure. There are two kinds of heart failure. There’s the kind that any cardiologist can diagnose in about a minute. That you do NOT have. Which is why cardiologists missed this. What you have is Compensated Idiopathic Cardiomyopathy.” [Idiopathic: cause unknown; Cardiomyopathy: structural or functional disease of heart muscle] “And your primary means of compensation—now this is the big twist—are you ready? Have you got your seat belt on? The primary methodology for compensation for this disorder is in fact CFS itself.”

Patient responds: “I see. So, this is the body’s way of saving us from dying of cardiomyopathy.”

Dr. Cheney: Yes. From dying of cardiomyopathy.”

Taken from this link. And Dr. Cheney is on my list of CFS specialists to visit. (Long gap in posts! Life has been…challenging! CFS has been cruel!)

So CFS is nature’s way of saying, to some of us with CFS, go lie down and save your heart. This is the diagnosis my grandmother should have had. Her heart gave out amidst doctors’ decrees: “There’s nothing wrong!” And to this day, rare are those cardiologists who have a clue what’s going on with the heart of a CFS sufferer. Maddening…

Shilajit

Shila…huh? This is one of two earthy substances I’ve decided to consume for more support of immune system, etc. etc. Since recurring fever is well, recurring, I’m hoping this will kick it. I just discovered it is purported to also benefit…

drumroll…

the mitochondria. Oh. Gee, CFS is only mostly and majorly indicative of mitochondrial failure.

An interesting tidbit here:

“What is Shilajit?

Ancient doctors discovered shilajit preserved in the rocks of the Himalayas, and it became an essential part of their treatment for a variety of conditions.2-5 Shilajit is a rich brown organic material that forms in the rhizosphere — the thin layer of earth where living roots and microorganisms interact with the rocky core of the planet itself.2 This intimate organic/inorganic relationship generates the humic substances that make up shilajit, contributing to its more than 85 distinct components.2,6,7

Modern analysis has determined the presence and function of two major components of shilajit, fulvic acids (also called humic acids) and dibenzo-a-pyrones (DBPs). These two components go hand-in-hand to promote andenhance the energy-boosting function of CoQ10 in the body. Here’s how they work.

Fulvic Acids

Found in both living and fossilized organic material (such as peat), fulvic acids protect mitochondria against oxidative damage and reduce dangerous lipid peroxidation.8Fulvic acids carry DBPs into mitochondria9 thereby augmenting the availability of electrons in the mitochondrial energy pathway.

Fulvic acids and related humic substances found in shilajit also work as “electron shuttles,” augmenting CoQ10 to speed and facilitate essential electron flow in mitochondria.10-13 Mitochondria generate those electrons from the food we eat andcapture their energy in ATP molecules. ATP is the cellular energy “juice” that drives all living functions. The larger the flow of electrons, the greater the production of vital ATP — and the more energy there is to power vital functions and protect cells from aging.”

While it’s lovely to protect the cells from aging, I’m going for optimal daily living in spite of CFS. We’ll see what happens. Currently taking a combo of humic acid and shilajit (with Ubiquinol – superior form of CoQ10). We’ll see what it does.

Related Link Here

Topical Magnesium for Headaches

One of the many frustrating realities of CFS is the recurrence of headaches. It’s not something I typically mention if anyone asks “what are the symptoms?” But there it is. Sometimes pounding my head for weeks. I can also go for years with the occasional headache. It’s one of those intermittent (meaning months on/off) realities. As an example: this past Saturday I went around all day feeling like someone had stuck a knife in my right temple. Throbbing horror. But I kept moving. Went to my daughter’s 18th birthday party, the second one and less focused on family. All I had to do was show up, thankfully. Teens, noise and non-stop activity. Headache’s worst scenario. By the time I got home all I could do was crawl in bed. Slowly. Carefully. I use transdermal magnesium nightly. It’s becoming quite a revolution for my CFS story, once again. (I had a magnesium flush-injection while pregnant 18 years ago and my CFS symptoms almost totally disappeared for a number of years.) I had done my usual routine with the magnesium oil but more liberally applied it to my body with high hopes for relief from all the other CFS realities I live with daily. But I was tossing and turning, the knife in my head keeping me awake. Finally, it occurred to me to put some of the magnesium directly on the “knife” in my head. Within minutes I passed out, the pain fading. I haven’t gone without this pain for 2 weeks. I might catch a break for a few hours in the morning but by noon or 2pm my head is pounding.

2 days now. Zero pain. As it turns out I’m not alone in this experience. Magnesium “oil” saves the day for quite a few headache sufferers.

Here’s my current  recommendation for the best product: http://www.ancient-minerals.com/products/magnesium-oil/

CFS/ME sufferers need to realize magnesium is essential to the production of ATP and this is pivotal to our recovery during times of reactivation. For CFS newbies this means those times CFS has flared up and taken over your life on significant levels.

As a result of that evening of dousing myself (drowning, more like) in the magnesium oil, I was able to go walking along NC’s Deep River with my sister. Two days of significant activity for a CFS veteran is risky business sometimes, especially while in recovery. I awakened today to no headache, no fatigue horror and no major pain.

Here’s to more magnesium and more living…

j. ruth kelly, all rights reserved, 2013

j. ruth kelly, all rights reserved, 2013

Muscle Mass = More Mitochondria

This would be the holy graille for CFS sufferers with all the challenge to attain it (but not something to give up on!)…

“For many years, it was commonly believed muscle soreness was from lactic acid buildup, but this has now been thoroughly debunked by science. The burn you feelwhile exercising is indeed lactic acid, however, your body flushes it out very quickly — within an hour of exercising.

In actuality, lactic acid is a muscle fuel, not a caustic waste product. The myth that lactic acid causes muscle soreness stems from a century-old misinterpreted frog experiment.2

Your muscles produce lactic acid from glucose, which is then taken up by your mitochondria. The more fit you are, the better adapted your muscles are at using it.

The larger your muscles become, the more mitochondria you have, and the more efficient your “lactic acid furnace” will be. Mitochondrial mass (and therefore, athletic performance) is further increased by high-intensity burst type training.

Delayed onset muscle soreness (DOMS), or the muscle soreness you’ve experienced one to two days after exercise, is actually caused by inflammation stemming from microscopic tears in your muscle fibers, or more specifically, microtears between your muscles and their surrounding tissues.

This most often occurs when you start a new exercise program, change it in some way, or resume exercising after a period of inactivity. Eccentric contractions seem to cause the most soreness, meaning movements that cause your muscle to forcefully contract while lengthening, such as the downward motion of squats or pushups.

These damaged muscles release chemical irritants that trigger mild inflammation, which awakens your pain receptors. Other theories about DOMS attribute the phenomenon to changes in osmotic pressure, muscle spasms, or differences in how your muscle cells regulate calcium.

Although science has not yet pinned down the exact process, post-workout soreness is a normal response to exertion and part of an adaptive physiological process that leads to increased strength and stamina.” Dr. Mercola

Related Link Here

Coconut Oil Considerations…

Coconut oil claims high distinction among all the oils out there and has recently re-captured my attention as another source for optimal mitochondrial function. Optimal mitochondrial function is vital for all of us but moreso for those who deal with CFS/ME. Another bonus or 2:

“Coconut oil doesn’t need bile to be assimilated and is therefore easier to digest, especially for those with digestive or gallbladder issues…”

and…

“The medium-chain fatty acids in coconut oil have antibacterial and antifungal properties that can help those dealing with gut flora imbalances.”

The article these quotes are taken from is packed with great info and a note of caution worth considering. Check it out…

Related Link Here

 

Acetyl L-Carnitine

…to the rescue…

Here’s why CFS/ME sufferers need to keep this one in their daily supplement routine:

“Carnitine is the carrier molecule that takes fuel in the form of acetate groups from the cell across mitochondrial membranes where it is needed to fuel energy production by Kreb’s citric acid cycle and oxidative phosphorylation. Acetate groups in the cell bind to carninine to form acetyl L-carnitine, which can then pass through the mitchondrial membrane. The acetate groups is then given up and L-carnitine passes back through the mitochondrial membrane into the cell in order to pick up another molecule of acetate. Using the car analogy, carnitine is like the nozzle on the fuel pump that delivers fuel into the tank of your tank of your car where it is needed.

Carnitine can be made in both the liver and the kidney from cysteine and methionine (both amino acids in animal protein) and requires iron and vitamin C for its synthesis. In muscle meats L-carnitine makes up 0.1% of dry matter. There is very little carnitine in plant derived foods, which may partly explain why vegetarianism seems to be a risk factor for chronic fatigue.

A typical sort of dose to treat problems associated with poor mitochondrial function is 2 grams a day. Studies have shown it is highly effective in ischaemic heart disease. It has also been trialled in the treatment of chronic fatigue syndrome…” Dr. Sarah Myhill

Related Link Here

I take 2 grams a day WITH r-lipoic acid (this is what the body creates FROM alpha lipoic acid) in order to optimize their benefit. Ratio of 1:1. It’s an energy revolution when I’m careful not to overdo the activity. I consider these 2 supplements a daily must.

CFS Symptoms In Muscles

“If the blood supply to muscles is impaired, then muscles quickly run out of oxygen when one starts to exercise. With no oxygen in the muscles the cells switch over to anaerobic metabolism, which produces lactic acid and it is this that makes muscles ache so much.

As well as the above problem, muscles in the CFS patient have very poor stamina because the mitochondria which supply them with energy are malfunctioning.”

Dr. Sarah Myhill

My Own Heart Explained…

“If mitochondria (the little engines found inside every cell in the body) do not work properly, then the energy supply to every cell in the body will be impaired. This includes the heart. Many of the symptoms of CFS could be explained by heart failure because the heart muscle cannot work properly. Cardiologists and other doctors are used to dealing with heart failure due to poor blood supply to the heart itself. In CFS the heart failure is caused by poor muscle function and therefore strictly speaking is a cardiomyopathy. This means the function of the heart will be very abnormal, but traditional tests of heart failure, such as ECG, ECHOs, angiograms etc, will be normal.” Dr. Sarah Myhill

Mitochondria – Pivotal Role in CFS

From Dr. Sarah Myhill’s wonderful website:

“The job of mitochondria is to supply energy in the form of ATP (adenosine triphosphate). This is the universal currency of energy. It can be used for all sorts of biochemical jobs from muscle contraction to hormone production. When mitochondria fail, this results in poor supply of ATP, so cells go slow because they do not have the energy supply to function at a normal speed. This means that all bodily functions go slow.

Every cell in the body can be affected

The following explains what happens inside each cell:

ATP (3 phosphates) is converted to ADP (2 phosphates) with the release of energy for work. ADP passes into the mitochondria where ATP is remade by oxidative phosphorylation (ie a phosphate group is stuck on). ATP recycles approximately every 10 seconds in a normal person – if this goes slow, then the cell goes slow and so the person goes slow and clinically has poor stamina ie CFS.

Problems arise when the system is stressed. If the CFS sufferer asks for energy faster than he can supply it, (and actually most CFS sufferers are doing this most of the time!) ATP is converted to ADP faster than it can be recycled. This means there is a build up of ADP. Some ADP is inevitably shunted into adenosine monophosphate (AMP -1 phosphate). But this creates a real problem, indeed a metabolic disaster, because AMP, largely speaking, cannot be recycled and is lost in urine.

Indeed this is the biological basis of poor stamina. One can only go at the rate at which mitochondria can produce ATP. If mitochondria go slow, stamina is poor.

If ATP levels drop as a result of leakage of AMP, the body then has to make brand new ATP. ATP can be made very quickly from a sugar D-ribose, but D-ribose is only slowly made from glucose (via the pentose phosphate shunt for those clever biochemists out there!). This takes anything from one to four days. So this is the biological basis for delayed fatigue.

However there is another problem. If the body is very short of ATP, it can make a very small amount of ATP directly from glucose by converting it into lactic acid. This is exactly what many CFS sufferers do and indeed we know that CFS sufferers readily switch into anaerobic metabolism. However this results in two serious problems – lactic acid quickly builds up especially in muscles to cause pain, heaviness, aching and soreness (“lactic acid burn”), secondly no glucose is available in order to make D-ribose! So new ATP cannot be easily made when you are really run down. Recovery takes days!

When mitochondria function well, as the person rests following exertion, lactic acid is quickly converted back to glucose (via-pyruvate) and the lactic burn disappears. But this is an energy requiring process! Glucose to lactic acid produces two molecules of ATP for the body to use, but the reverse process requires six molecules of ATP. If there is no ATP available, and this is of course what happens as mitochondria fail, then the lactic acid may persist for many minutes, or indeed hours causing great pain. (for the biochemists, this reverse process takes place in the liver and is called the Cori cycle).”