My ME/CFS History
1989 – The First Flu-like Illness
I was always a high energy burn the candle at both ends type-A person. In my early twenties (1989) I came down with a flu-like illness that did not go away. I had gone from a person who would play sports 4-6 hours a day, to one who would get worn out walking around the block. The doctor’s said I had mono or Epstein-Barr Virus (EBV), but the condition did not resolve.
At first I vowed I would solve the illness but then I became depressed and took a leave of absence from work and just slept and read all of the classic novels. Six months later my roommate got tired of me being depressed and laying around the house and we got into a fight that more resembled a wrestling match which snapped me out of my funk and I found I was normal again.
Circa 1997 – Giardia and Intestinal Issues
I then returned to my high energy ways. Eventually, I took time off to travel the world and got dysentery and giardia. I was given the standard drugs to kill everything but my GI system would remain a mess and conventional medicine found nothing wrong. This was about a year before my next set of issues.
Circa 1998 – Stress, A Flu-like Illness and Orthostatic Intolerance
I had a lot of stress in my life and came down with a flu-like illness which went away, but I was left with a lot of neurological issues that the doctors could not find an answer for. Eventually, I did a tilt table test and was diagnosed with neutrally mediated hypotension and ME/CFS. At that time my symptoms did not meet the current defined definition for Chronic Fatigue Syndrome.
I was put on Paxil and Florinef and on that combination I lead a relatively normal life for about ten years. I generally was a happy person who loved doing things and living life and still had lots of energy. I would just have bad days and I could not point my finger as to why. Nobody suggested that I should have gotten off of the SSRI’s.
Circa 2006 – Stress, Depression and Sleep Problems and Reduced Ability to Exercise
Eight years ago, I became excessively stressed out and depressed again, but I did not lose my energy. Instead it affected my sleep. I was taken off Florinef and put on Celexa. Again, I recovered and was leading a relatively normal life but my exercise tolerance was decreasing. I was in general a happy person but was feeling limited and somewhat trapped. My sleep was still somewhat fragile.
Then work conspired to screw up my sleep by putting me on-call nights and working days and I went almost 2 weeks without sleep leaving me in a worse state, but still I had energy and was able to go to work. Eventually, I overcame that period but my physical limitations had increased. I was still able to exercise some and live a relatively normal, but constrained life. I had a good PC doctor who was working with me on the Teitlebaum’s advice, and I was working with Dr. Nancy Klimas out of the University of Miami.
About 3 years ago, my primary care doctor died of a brain tumor and Dr. Klimas and Dr. Rey left University of Miami and stopped taking insurance, so, I was left treating myself. I was frequently frustrated by my physical limitations and found that if I pushed too hard, I would have a bad day or 2, but then I would bounce back.
Around the summer of 2012, my company put up a basketball court in the back parking lot. I started increasing my exercise and playing a little basketball with the usual result that the days I overdid it, usually meant 1-2 days where I felt not so great, but I still remained 70 – 80% functional. However, I figured it was worth it to do the things I loved to do, even if it cost me a few rough days.
Meanwhile, I ignored the other signs that things were getting worse. I was having more anxiety issues and I was sweating through 3 shirts a day at work. In December of 2012, I did some blood tests that showed I had elevated creatine kinase (CK) levels (not too elevated 200 – 500) and a positive ribonucleoprotein (RNP) test suggested an unspecified autoimmunity issue).
2013 – the Race and the Collapse
Then I decided to do this Superhero race in January 2013 which was a 5 mile obstacle course race. I was feeling crappy before the race, but went on and quite enjoyed myself. Three days later I came down with flu-like symptoms. A week after that I was having a panic attack and my life went steeply downhill for the next 8 months.
My sleep was a mess and I was living off adrenaline to cope with the doctor’s visits. One psychiatrist put me on Seroquel 25-50 mg to help with my sleep. This worked at first but left me feeling flat. Then my energy left me completely and I felt like I was a 90 year old. I could not even walk around the block.
There were several times when I did not sleep for 72 hours and felt so weak, that I thought I would die. In June, a few days before my daughter’s 7th birthday, I was still a mess but for some reason that afternoon, I felt a little better. I started helping organize the yard for the party, I had a little adrenaline going and must have pushed too hard. Two days later, my right foot had gone numb and I was becoming severely depressed. The day of my daughter’s birthday was incredibly difficult and I spent most of it in bed.
I have been in survival mode ever since. My biggest issues were depression, brain fog, sleep, anxiety and fatigue. I also had all the classic CFS immunological issues such sore throat, swollen glands, and headaches. I was living in a fog where I felt trapped inside my own body and brain. My depression was not related to my limitations but was a biochemical imbalance that left me in a place where I could not experience happiness and I sometimes felt that I would be better off dead.
Also, I was experiencing what I called attention deficit disorder (ADD)on steroids. It was hard to focus on any one thing for very long and I functioned best by jumping from one menial task to another. Other issues that occurred included blood sugar dysregulation, and muscle wasting in my foot and jaw.
Much of that has now improved. I currently have enough energy that I could function in the real world if not for fatigue and the neurological issues.
What I Know From Medical tests.
My immune system is/was not functioning very well –my NK cells are low. I have a reactivated HHV-6 and HCMV infection. My blood sugar is borderline diabetic – elevated fasting glucose and A1C. My testosterone is low and does not respond to testosterone gels. My 24 hour cortisol test is high. My blood pressure is borderline high and fluctuates. I have an elevated CK levels but not too high to indicate a specific diagnosis. I don’t have sleep apnea or restless leg syndrome.
Why Dr. Cheney?
For several reasons.
- I was feeling desperate after Dr Rey told me that she could do nothing else for me, and sent me off to try Rituxamab or GcMaf with doctors that had no experience with those drugs.
- I watched a video which Dr. Cheney talked about the heart issues – which I had experienced – which Dr Cheney said were improved with VIP spray.
- Dr. Cheney puts his patients on B-12 and Mg injections which was the next thing I wanted to try.
- Dr. Cheney was working with other doctors, Dr Brewer, Dr Shoemaker, and Dr Kane who were looking at similar conditions and using different treatments.
- Dr. Cheney had already experimented with stem cells and GcMaf and had experience with both related to CFS.
The First Visit
I just returned from my trip to Asheville, North Carolina to see Dr. Cheney.
On the plus side, Asheville is a great little city situated on the Blue Ridge Parkway along the Appalachian Trail. Along with being an outdoorsy city, it also contains a large contingent of people who are either stuck in or trying to relive the 60s (very bohemian), and this gives the place a lot of character. There are also lots of good restaurants.
The weather was cold and there was even a dusting of snow one morning, but it was nice to have some cold weather as I had come from Miami.
The Heart and the Mitochondria
Dr. Cheney has very specific ideas on what causes the symptoms of CFS. He believes a breakdown in the mitochondrial process that converts food and oxygen into energy (ATP) and water is a key factor. He also believes if mitochondria were not disrupted the person would die from oxidative stress, and that the mitochondrial ‘breakdown’ is a compensatory response that keeps that from happening.
Dr. Cheney uses his state-of-the-art 3D echocardiograph machine at his office to measure the IVRT, or isovolumetric relaxation time. The IVRT is an interval in the cardiac cycle that extends from the time of the closing of the aortic valve to the opening of the mitral valve. During this time interval, the heart muscle around the left ventricle (the main pumping chamber of the heart) relaxes so that the left ventricle can expand and take in a new batch of blood. In a normal healthy person, the IVRT is about 70 milliseconds or so.
Dr. Cheney reports that nearly all his patients have significantly longer IVRT’s. The rate at which the heart muscle can relax is limited by its supply of ATP. So if there is mitochondrial dysfunction, and ATP levels are low, then the heart muscle will relax more slowly than normal, and the IVRT will be longer than normal. That will leave the left ventricle unable to fill completely during the time interval available before the next contraction. The result is that the stroke volume, and hence the cardiac output (blood pumped out per minute by the heart), is lower than normal. Dr. Cheney refers to this as Diastolic Dysfunction.
He uses the IVRT measurement to determine whether a treatment modality has a positive or negative effect. If the treatment modality decreases IVRT increasing cardiac output, then it is good. If it makes it worse, then it is bad. For example, giving oxygen to CFS patients is bad as it increases the IVRT. Dr. Cheney believes giving a person with CFS more oxygen puts a broken energy system into overdrive causing them to feel worse.
Low Blood Volume
Low blood volume is another common issue in ME/CFS. Dr. Cheney believes the low blood volume results from central diabetes insipidus (not to be confused with diabetes mellitus, which involves blood sugar and insulin).
Central diabetes insipidus is caused by insufficient secretion of antidiuretic hormone (also called vasopressin) by the hypothalamus/pituitary. Lower than normal vasopressin levels cause the kidneys to excrete too much water from the blood into the urine, causing larger than normal daily urine excretion in ME/CFS patients (normal is about 1.5 liters per day).
This causes constant thirst, and the desire to drink more fluids than normal. Even added fluid intake, however, is unable to keep up with large losses of fluids into the urine. The low blood volume (hypovolemia) that results causes the flow of blood back to the heart (venous return) to be lower than normal. Since the heart can only pump out as much blood as it receives, this is another factor that causes the cardiac output to be lower than normal in ME/CFS.
HPA Axis Dysfunction
HPA axis dysfunction also impacts the circulation in ME/CFS. Normally, the HPA axis plays an important role in regulating blood pressure, but when the HPA axis becomes dysfunctional, as in ME/CFS, the blood pressure usually drops lower than normal.
Intracellular Magnesium/Potassium Deficiency
Finally, in many cases of ME/CFS, Dr. Cheney finds a deficiency of intracellular magnesium or potassium or both. These two minerals are important for maintaining a steady heartbeat (sinus rhythm). If one or the other becomes deficient, arrhythmias or palpitations can occur.
The low blood pressure, the low blood volume, the diastolic dysfunction, and the heartbeat problems all make it difficult to deliver normal blood flow to the various parts of the body — especially the brain when the person is upright.
This combination of problems results in a variety of unpleasant conditions such as orthostatic hypotension (OH) and postural orthostatic tachycardia syndrome (POTS). It also causes symptoms such as fainting in a warm shower, pooling of the blood in the legs, and palpitations. POTS (tachycardia upon standing) is caused by the efforts of the sympathetic nervous system to increase the cardiac output in the face of a low stroke volume.
Below is what Cheney had to say on the subject.
“All my career, I have been trying to answer the question of what do ALL CFS cases have and at least most healthy controls do not have. I have come up with only two. All CFS cases are toxic to oxygen by echo derived IVRT response criteria as against 1/3 of healthy controls who are mildly toxic to oxygen (but when probed carefully are not as healthy as they purport to be. (i.e., “I used to run a mile until I got mono in HS, and ever since then I can no longer run a mile but I am healthy.”
The cause of oxygen toxicity is likely to be poor redox control which will lower the SED rate due to chronic oxidative injury to the RBC membrane. Dr. Cheney states data from Kennedy-Krieger Labs in Baltimore as well as membrane pictures from John McLaren-Howard in the UK provide ample evidence that that has happened.
The other problem that appears to be universal in “disabled” cases of CFS as distinct from the walking wounded with CFS is low cardiac output with a cardiac index (CI) of less than 3.0, where normal is 3.0-3.5. Cheney says, “I have yet to see a 3-D CI above 2.8, and the average is 1.8 in my practice which sits at the cardiogenic shock threshold. This is nothing short of incredible. Physiologic data such as the cardiac index is fundamentally a much better clinical correlate than any lab marker.“ Mine is currently 2.5.
As noted above, Cheney believes the low cardiac output is a compensatory response to poor redox control (i.e. oxidative stress) and that without that people with ME/CFS will die. He notes that he finds abnormal redox tests (low GSH/GSSG ratios or low NADPH or low SOD or GPx function) with greater predictability than any of a host of immune markers.
He has given me a list of things to try. Some are cheap and relatively easy, but others are more expensive and seem a little far-fetched. Based on my testing with him, and my relatively low number of other symptoms, he believes I’m in the group that usually sees some benefit from his treatments.
It will probably take me 6-12 months to work my way through these treatments and see how they will affect me. Some, he warned, will most likely make me feel worse at first (and I’m not really looking forward to that!).
So was it worth $10,000? If I actually do all of the treatments and the labs over the next year, it will probably cost me another $10,000. Thus, my answer to the question is, maybe. If I can reach a higher level of functionality and maintain it, then yes. Since I really believe Dr. Cheney is on a mission to understand and fix this illness by using scientific reasoning and data-driven analysis, I am glad to have him on my team.
- See Part II – Dr. Cheney’s Protocol
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