From Our Readers: Comments and Suggestions – 10/13/15


Wow!! A doctor's case study 
Re: How Walking to Bathroom Can Be Harder Than Running a Marathon: A Doctor’s ME/CFS Case Study

Wow! Wow! This article is like a bright light shining on my own experience and saying "You're not the only one with this problem." I grew up with a healthy, outdoor lifestyle; I rode horses, skated, swam, mountain-climbed, kayaked, hiked, biked, gardened, ate a very healthy diet…when I developed CFS, my legs just stopped working normally. Things like biking are far in my past now. I still love to walk my dog…but if I increase how often/far I walk (even gradually over time), my leg muscles develop burning pain…pain severe enough to wake me up, keep me awake. Pain to bring tears to my eyes. Not only that, but the muscle mass I had slowly built up vanishes — my calves turn rapidly from firm muscles into flabby limp mush. When this happens, my whole body relapses as though there's a systemic correlation. Fatigue crashes over me and my brain too like a solid wall. And there I am, walking one day and in bed the next, over and over for 15 years. Doppler scans of my legs show good venous supply. Heart treadmill tests…oh, forget it, I can't keep up with the treadmill because of the pain. I start falling off the thing backwards…something that's only amusing in movies. This leg issue is incredibly limiting and frustrating. If anyone ever does a study on this, sign me up!! And Cort, if you're reading this, please can you explain how reading one's lactic acid levels with a home monitor might help…I mean, if my levels show up high, what would I do about it? Anyone have suggestions??? ~Posted by: tamsyn, Oct 4, 2015

Children in the US are misdiagnosed too
Re: Hope for Karina Hansen With Help From Save4Children

When I read about Karina, it bought back so many bad memories and heartache that I cried. It is stupidifying to go to so many doctors who simply don't know anything about CFS or fibro, yet, be wholly dependent on them. 

It is criminal for parents to have their sick children taken from them due to the doctors ignorance! No family should ever experience that. My experience was harrowing even with legal and medical defense.

Our story:

My daughter, who recently enrolled in college (huge milestone!), was sick for 8 years until the right combination of doctors got her on a treatment path that helps her function.

At 10 years old (2008), she was diagnosed with re-occuring repsiratory infections and juvenile idiopathic pain and told to exercise. She was having muscle spasms so severe that she could would double over in pain, unable to move. She had many other symptoms, as well, including intolerable fatigue. With fatigue and pain she could not participate in school, climb stairs much less exercise! She tried and got sicker every time. I got a 504 accommodation plan in place with the school and kept it updated through the years.

As a divorced, single mother with very little support, I studied and sought out doctors who could help. When none did, I took her to Dr. Charles Jones in Connecticut (we lived in KY) who treated her for lyme disease. My daughter had removed a tick embeded in her scalp about a month before the symptoms started. However, her condition didn't resolve completely. Back in Kentucky, we went to so many doctors, specialists and integrative medicine experts, I've lost count. Medicial bills were staggering. 

Finally, in Decemeber, 2012, she broke out in a red rash that everyone could see was REAL. At that time, she met the pediatrician who helped change her life. I'd taken her to her regular pediatrician the day before who dismissed the rash as something that would go away — despite, her red, swollen throat. 

I called the new pediatrician the next morning and asked the nurse if he believed in lyme disase. She was seen that day. At that time, even the infectious disease doctors would not entertain lyme disease as a factor because it didn't "exist in Kentucky".

The new peditrician diagnosed my daughter as having acute strep and mononucleous. He continued to treat chronic mono after the acute phase due to very high Epstein Barr titers. He put her on antibiotics as well as anti-virals. She began to improve some.

By February of 2014 this pediatrician had collected blood-work/documented treatment for nearly two years. She also remained a patient of Dr. Jones. The peditrician insisted that I take her back to Dr. Jones for follow-up. Dr. Jones looked at the new chart and made a call to an immunologist while we sat with him in his office and sent us there immediately.

Her records showed that her B-cells were consistently low. 

I brought her home to find an immunologist as the one that Dr. Jones referred to only took cash and I couldn't afford to even have her seen.

However, I knew what kind of doctor she had to see and her pediatrican sent her to an immunologist whom he'd studied with at University of Kentucky. This doctor did extensive tests and diagnosed her with Common Variable Immune Deficiency (CVID). Now, she self-infuses immunoglobins once a week. Her health improved dramatically although she still suffers from pain, fatigue and frequent infections — she can function, with accommodations, well enough to attend college.

In 8 years of searching, we lived less than 5 miles away from the immunologist, yet wasted so much time and money to get there!

Blaming Parents:

From the beginning, her father did not believe she was sick and refused to help pay medical bills. He was an alcoholic so we were in court several times regarding visitation and other issues, including medical payments. At one point, a court-ordered psychiaist kept her in "CBT treatment" for 18 months. This woman suggested to the judge that since my daughter had not responded to "treatment" then it must be Munchausen by Proxy. I was incredibly frightened and angry. The judge replied that it was highly unlikely to be Munchausen by Proxy but allowed the psychiaist to have access to all of my medical records!

About me:

After my daughter was diagnosed with primary immune deficiency (CVID), the immunologist tested me. I had been increasingly sick. Since I was teenager I had constant strep throat as well as hypothyroid. I had been diagnosed with fibromyalia, CFS (ME), migraine, at various times in my life. I saw my physicians for those conditions but because I was sick so often, I'd go to a walk-in clinic that I could afford to treat re-occuring infections. I couldn't afford any more medical and legal bills. 

However, the immunologist diagnosed me with low T and B cells, the immune system's natural killer cells. He said, "Mom, you're twice as sick." 

I was started on immunogloblin infusions, self-infusing twice a week. It helps but I only have so many "spoons of energy" each day, if I push too hard, I wind up in pain and exhaustion that takes days to recover. It is much better than weeks to recover! The immunologist theorizes that my daughter inherited the dyfunctional B-cell deficiency from me.

I don't think infusions are the final answer. But, we've both improved so greatly that I firmly believe that the immune system and B-cells are involved in treating CFS/ME as well as fibromyalgia.

I'm thankful I had the resources I did.

I'm not wealthy. Getting as far as I did finding medical answeres took all I had, financially. I don't regret it. 


Today, my daughter has a chance of a healthier future. At 18, She has learned to be a vocal advocate for herself. I could not be more grateful in every way.

She chose to attend college in a different state. The doctor-go-round has begun again. But, she has medical evidence and is finding the right physicians. 

I'm watchful for developing medicines. And continue to be vigilant as treatments are found.

None of us should have to settle to live diminished lives because we have diagnoses without cures.

Children should never have to suffer due to idiots with physican's licenses and power that make their lives worse. 

I want Karina to get all she needs to get the correct medical care and recover from her doctors' abuse. 

It is intolerable that children in the US and other countries are mis-diangnosed and are made to blame! It is nightmar-ish. ~Posted by: akr500, Sep 16, 2015 

Not for Me
Re: The "Mind Diet" Reduces the Risk Of Alzheimer’s Dementia. Might It Also Help the Brain Fog Found With Fibromyalgia or Chronic Fatigue Syndrome?
I have tried many times to achieve improvement in my CFS symptoms through diet. Several months ago, I figured I would bite the bullet and convert to a Mediterranean diet, but although I ate only whole grains, I had incredible cravings for refined carbs. I also found that I couldn't think very well, and not connecting it to my diet (since I was supposedly on the healthiest diet), I was concerned that it might be an indicator of early dementia. Tired of the cravings, I converted to a modified Atkins, and I feel so much better — more energy, less confusion. By "modified," I mean that I eat a lot of fish, a fair amount of lean red meat and poultry, green vegetables every day, blueberries, walnuts, plain Greek yogurt, and a tbsp of psyllium seed. I don't eat pasta — not even whole wheat or brown rice or quinoa — and I don't eat bread. Potatoes are not on the menu. I eat turnips, an occasional carrot, squash, peppers, cucumbers, tomatoes, etc. I think eating something like chicken livers or other organ meats might be essential, so I'm going to start doing that too. I don't eat much of the cheese that most Atkins people seem to depend on. Instead of drinking alcohol, I drink Kombucha every night, and have an Atkins bar for dessert. ~Posted by: bah125, Sep 16, 2015
I've been vegan for 20 years and am healthier for it. No triglycerides issues, blood pressure issues, cholesterol all good.
I think I have less pain because of it too and my mind is a wee bit sharper.
Our digestive system is herbivore. We cannot process animal flesh and other products from animals. It is not natural. So I totally disagree with his recommendation.
Plus the "production" of processing animal products harms the environment with waste of water, poisoning of our air and waters, wasting natural resources, and worst is the CHEMICALS they use to process all this crap. ~Posted by: GeekyGranny, Sep 16, 2015
Excellent article. The list of items is very helpful, but you've only got 14 items when you say there are 15. Wondering if you can identify the 15th, please? I know olive oil is one of the recommended items, so perhaps that's it? ~Posted by: MindDiet, Sep 12, 2015

NIH awards
Re: NIH Awards $1.3 Million to Lipkin, Klimas And Hanson for ME/CFS Research

I was glad to read of the NIH awards to all of these researchers. It's about time! I've became sick with CFS/ME in December of 1980–it's been a very long haul. I was an Assoc. Prof. at Rutgers Univ. and very reluctantly had to leave my teaching in the Art. Dept there and go on Soc. Sec. Disability.

I was especially happy to learn of the award to Nancy Klimas because I now live in So.Fla.and am very aware of her reseach into CFS/ME and her keen interest in treating patients with this disabling and frustrating illness. She is a legend in this part of the world and a hero of mine. Hooray Nancy! ~Posted by: danny1. Sep 24, 2015

The Lesser Of Two Evils
Re: Dr. Paul Cheney Discusses the Benefits of Klonopin
Dear Dr. Cheney,
I am so sorry to hear, that so many people who feel Klonopin & other benzodiazepines are the cause of there many problems and the root of all Evil…
I feel Dr. Cheney is simply a compassionate physician, who found something that actually helps his patients, who suffer from underlying causes that needs intervention

Our society, chooses not to see, it can be the best option & benefit the patient in long-term severe cases.
As a whole, we are locked in a neat & tidy little box, thinking we are drug addicted & not chemically reliant upon certain drug classes. Many of us are left defenseless and the mindset has changed.
Every drug has side affect. So which is the lesser evil??
It wasn't until my accute onset, from heavy metal exposure, did I begin having to suffer from ME/CFS Neurological inflammatory problemsMuscle & brain seizures more prevalent than ever,causing accute oxidative stress & neurotoxicity.
I am fighting for my life and sanity here..
Due to the ignorance of those who do not weigh the Benefits VS. Side effects of this drug.

I can think of hundreds of SSRI's that have so many more side effects, being a patient of severe serotonin intolerance or/Serotonin Syndrome.

These types of meds only exacerbates symptoms further, having an opposite reaction!
I believe it is a very personal choice, as Klonopin is my only salvation, bringing me back to normalcy, my receptors seem to be protected from a total burnout. Realizing, as well, I may need to be on Klonopin for life.
I have had to go off Klonopin during the last few months & almost 2 years, at one point having to end up with continual vertigo, spacial disorganization, disruption of all senses.
Through the 27, years it has escalated to the point, becoming a life threatening situation & the ability to control or ease the symptoms, to some manageable degree, are a very real concern, of weather I can continue to live at all?
I really wish, as I suffer in silence, wishing there were more physicians, who cared about their patients, than those whom are wrapped up in politics & liability, dismissing patient needs.
Bashing Dr. Cheney, for providing compassionate care is wrong! He is a physician who thinks out side the box, who knows a great deal more about ME/CFS, and as has been there from the first outbreak. He acts with integrity, for the welfare of the patient, knowing the outcome of Long-term Chronic Pain in ME/CFIDS
Most who criticize the the use of Klonopin, on a individual basis, are not acknowledging the underlying symptoms of a cute ME/CFIDS patients.
Even on very small doses provides immediate relief with few side effects, after days of insomnia & unrelenting head pain.

Taking SSRI's for some kind of relief from the muscle & brain seizure activity & accute CNS meltdown, has proved to make matters worse in My case.

I recently posted a blog, about this very topic. I side with Dr. Cheney. I know the underlying signs & symptoms of neurological inflammatory response, triggered by factors, environmental nature; Smoke from Wild-Fires, stress reaction, Viral activation and neurocognative stressors, that remain prominent and ongoing.
While Klonopin does not cure it, it does seem to promote some reversal of cellular death. Sometimes taking a few days, after memory loss occurs & seizure activity abates & sleep returns to normal pattern.
It most certainly helps the brain to function.
Whilst many of you, may think the drug is at fault, as coming off it,is a hard thing to do, when the underlying defense mechanisms no longer exist? Is a cruel and terrifying reality.
I agree with Dr. Cheney; I may no longer have the neuron's or receptors to defend the neurotoxicity in the brain, it is what brought me to this one drug, which has given me so much of my life back!
The reality of biased doctors, disconuing this drug in some cases is met with a certain outcome of further destruction and demyelination of reactive nerves, in the cerebral cortex and CNS.
It has been a Godsend and unfortunate that it is being denied me, by an inept medical society for people who have real disorders that are not being further addressed.
We borrow drugs from all different sectors. I ask a question?

If you were the physician, and nothing else the patient has tried, comes even remotely close in providing quality of life, relief & comfort.
Would you endanger your patient's life? Knowing it could certainly cause the patient more physical & neurogic distress, making ones life a perpeptual living hell! With no end in sight,contemplating ending their life?

As the cytokine activity produces more oxidative stress, making the patient feel completely depressed,with suicidal thoughts, as the immune system begins attacking itself, suffering more brain cell death with each episode becoming more unbearable.

What would you do?
I would stand by my patient, As Dr. Cheney has? There are so few out there, who go by intuition & compassion. ~Posted by: LadyWolf25, Sep 25, 2015

Re: An Interview with Dr. Jon D. Kaiser – Supporting Mitochondrial Function in ME/CFS Patients 

Dr. Kaiser—Your article is the most inspiring and possibly the most correct in covering all aspects of CFS/ME.

I was diagnosed with CFS/ME in 1986 (yes–29 years ago.} I was 46 years old, happily married, in excellent health, very energetic, always with a positive outlook, achieved high ranks in all my job choices, including West Coast Sales Mgr.for several Cruise Lines over an 11 year period; and, later, Membership Director of the Century City Chamber of Commerce. It was there that I suddenly became very ill and overwhelmed with chronic fatigue. I often had to pull off the road on my way to my office—to SLEEP! 

I had a private office, and would sleep on a sofa inside whenever needed–which was every day. Of course, I consulted with doctors–many doctors. The Century City Hospital was walking distance from my office and I knew many people in the medical fields. I was finally diagnosed with CFS by a doctor whose name I do not recall. CFS was nearly "unknown" at that time, but my doctor had a close relative with all the symptoms and the doctor had spent many hours studying the condition.

Another local doctor suggested I had Epstein-Barr Syndrome.

Which, like CFS, had few or no known cures. My Doc prescribed an anti-depressant, which I dismissed at first because I'd never suffered from depression. That changed within a month, and I have needed to be on a.d.'s daily for all these years. Along with Xanax for anxiety. I have never found a doctor in So.California who treats CFS. I do keep searching. So many doctors, including my own, simply do not know what CFS is, and do not have the time, nor perhaps interest, to pursue an answer.

I hope, hope, hope Dr. Kaiser that you will be able to help me out of this awful illness. ~Posted by: donothaveone, Oct 1, 2015



I read about Vink's experiment a day or so ago. His conclusions should give researchers a clear direction to follow in a larger study. I also think his results are likely to be similar for a large number of me/cfs sufferers, whether their symptoms are severe or mild. PLEASE NOTE: it was my intention to give this article FIVE stars, but my mobile device recorded my finger swipe as four stars instead. My apologies to the author. ~Posted by: BarbRishaw, Oct 12, 2015

Dr. Peterson — "If I were you I would go after these people!" That's what it's taken to get this far and that is what it's going to continue to take, to find truly effective treatment. The road is long and hard and progress is slow, but we can get there together. Anyway, what's the fun in going alone? 
"Keep the Faith!" ~Posted by: herenow23, Oct 12, 2015

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