From Our Readers: Comments and Suggestions – 11/11/15

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Continuous Lactate Threshold Measurement Devices
Re: How Walking to Bathroom Can Be Harder Than Running a Marathon: A Doctor’s ME/CFS Case Study

I have not investigated product manufacturer claims or accuracy for a quick-search I did on "continuous lactate threshold measurement devices", but it seems like the technology is available, and being used in the sports performance area. I have Fibromyalgia/CFS/SEID, and my Son is an Ironman Triathlete. We often discuss similar way of measuring and/or monitoring new modes of training/treatment. He looks at what works from a sports performance perspective, and I look at what helps (or hurts) from a chronic conditions point-of-view. Here are a couple of product examples:
Some additional information/links related to my earlier comments.
PLEASE NOTE: This does NOT include comparisons of Lactate Meters that use blood sampling with continuous lactate measurement devices.

Again, I am not promoting any products, just noting a few examples of current technology. Be well! ~ Posted by: EmptyH, Oct 14, 2015

No wonder I always feel like garbage if I have even ONE alcoholic beverage! 
Re: Alcohol intolerance in CFS – gives us a clue as to the mechanisms of fatigue

It's really quite annoying. There are a few times when I'd really like to have a glass of champagne or even a beer, but I know that I'll pay miserably for three days….and so will the people around me.

With Fibro,CFS and artritis, the pain can be severe. The alcohol would take the edge off. 

Here's what I'm not sure I understand: when I was on vacation in Aruba, I drank the Aruban beer, Balashi. I did not get sick at all! I found out that there are no preservatives in this beer. I'm wondering if this is the real reason it didn't bother me…. ~ Posted by: Debbyb, Oct 16, 2015
I have a background in Anatomy and Physiology so really enjoyed the article and it makes sense. Thanks for sharing. ~Posted by: TanyaHibbert. Oct 15, 2015
Ever since I started drinking, not knowing I had ME or Fibromyalgia, I would get what I called "the hangover as I was drinking instead of the next morning" I would get a headache as I drank. I went to a party with a punch described as lethal. I certainly didn't drink more than one glass before going onto drinks that I knew what they were. The headache started after the third drink at which point I switched to non alcoholic drinks. I have only ever had one hangover and that came from drinking alcohol like water after dancing. Sleep for a couple of extra hours cured that! I am not aware if I was more tired after it though. I have always tolerated spirits better than wines. Interesting to find that this is a link to ME. ~ Posted by: cornishrainnoe, Oct 18, 2015

Hope for Patients with ME/CFS
Re: An Interview with Dr. Jon D. Kaiser – Supporting Mitochondrial Function in ME/CFS Patients
My husband will be 78 soon, he has suffered with Chronic Fatigue for 5 years, our doctor also prescribed anti-depressant – he took them for a while and decided they were not doing anything.Over the years he would have very bad episodes and then others not so bad, he was still able to do things. He has had to have back surgery twice – he is still in tremendous pain, this has really made the chronic fatigue kick in – there are days when he sleeps more than he is awake, basically cannot do anything. I have just placed an order for Hydroxocobalamin Extreme. I am going to give him your article to read, I also plan on trying some of the other products you have. I pray that this works, bless you, for helping others, I hope your remission continues – we live in Perrysburg, Ohio, we have never been able to find a doctor or anyone for that matter that has had or does have chronic fatigue. Thank you again. ~ Posted by: maintenance, Oct 16, 2015
Hi, I was very interested in your comments. I've had CFS for about 30 years, & it came back again with a big "hit" early this year. I'm interested in trying your K-Pax Immune formula, but I am on Warfarin, & was wondering whether there is anything in the formula that would interfere with my Warfarin levels. Thank You. Blueskies13. ~ Posted by: blueskies13, Oct 15, 2015

I have had a CFS condition for 20 years that has be negated for the last 15 of those years. Dr. Kaiser's article caught my attention because of the similarity of his theory to that of Dr. Paul St. Amand's 1999 book "What Your Doctor May Not Tell You About Fibromyalgia" which discusses use of guaifenesin to reverse the root cause of CFS. Dr. Kaiser's focus on mitochondrial support to assist CFS suffers correlates with what I understand is Dr. St. Amand's theory that in CFS sufferers, a phosphate retention in the body interferes with the creation of energy and guaifenesin reduces the effect of that condition. That protocol has worked to essentially eliminate the CFS condition for me for 15 years and I can understand that taking supplements to support the mitochondrial function could additionally be helpful. A web sites that gives additional and updated on guaifenesin is this: ~ Posted by: michaelkoch. Oct 16, 2015
Hi Dr. Kaiser, I found your article so interesting. I have suffered from ME/CFS since 2000. I used many vehicles to help myself including NAET, Acupuncture, massage therapy, as well as many supplements recommended by naturopaths. I am currently taking antidepressants (Prozac 20mg) and Trazadone for sleep/anxiety (100mg/night). I have been to pretty much every doctor here in Ontario, Canada, including Neurologists, Internal Medicine, General Surgeons, etc. I am really interested in your KPAK. I have been finding a lot of articles published on the ProHealth Website relating to Mitochondrial function. I have no idea what type of doctor treats Mitochondrial Function, if any. It just makes sense. I have been up and down with this illness for 15 years now, and have reached a level state, but it is not the best state. I am learning to live with it, understand it, and do what I can when I can, with no commitments to anyone. I thank you for your time dedicated to this illness, and look forward to anything new you find. Cathy Deevey ~ Posted by: chdeevey, Oct 16, 2015
Your thoughts are very interesting – I have ONE question,that NO DOCTOR could answer for 7 years now:I am diagnosed with CFS, due to lots of other illnesses, infections,auto-immune diseases- one of them being primary biliary cirrhosis PBC. My immune system works overtime, my antinuclear and antimitochondrial antibodies are in gigantic heights, even with Cortisone they are much too high.
Any known treatments against CFS concentrate on strengthening the immune system, which in my case is senseless, even makes everything worse.I had mitochondrial treatment without effect as well. Is there any solution to this problem? I would be very grateful for an answer, thank you very much !! ~Posted by: isabelsunshine, Oct 16, 2015 

The CDC has CFS in the High Consequence Pathogen Division
Re: Myalgic encephalomyelitis, chronic fatigue syndrome: An infectious disease
I too believe its infectious but how it was transmitted was always the issue. Now I think I know- the pathogen is in the gut. Columbia's Lipkin thought the gut was involved. After reading the book the Brain Maker. I put myself on high doses of high quality pro- and pre- biotic and after 20 years with the disease I am now CURED. I see it as nothing short of a miracle. Soon the world will see the importance of the gut environment. It is the biggest breakthrough in medicine in our lifetimes. Somehow we become exposed to another's gut microbes. That must be how it's transmitted.~ Posted by: shewolfdc, Nov 1, 2015

Thoughtful article
Re: Patients battle for justice
Dr. Jason has identified so well the problems ME-CFS afflicted individuals have had to endure for decades. Lives are torn apart and dismantled by a devastating disease that the scientific and medical fields have ignored, depreciated and even denigrated, causing the sufferers so much added pain, shame and deadening frustration in their quest for acceptance, understanding and knowledgeable medical help.

I am 75 years old, a psychologist, former nationally ranked senior tennis player. Approximately 7 years ago I began to experience unusually strong feelings of fatigue and some lightheadedness. Well, there followed about 30 to 40 doctors, innumerable procedures , many diagnosies and two major surgeries, one a heart valve replacement because my symptoms were diagnosed as heart failure at the University of Chicago. ME or CFS was never mentioned in the differentiation mix. Not an easy surgery and recovery, which was all for nothing. It just weakened me further. My second surgery was an emergency to save my life.

Cardiology at Rush was administering an esophageogram to get a close look at a foramen hole in my heart, determined to be the cause of my symptoms. A person who I believe was an unsupervised Fellow administered the procedure. Ignoring my admonishments of level 10 pain the Fellow continued to try to snake the instrument down my esophagus. The upshot was that he had missed the esophagus opening and was tearing through the wall of my esophagus causing leakage and massive sepsis.. After 5 hours in late night emergency neck surgery my life was saved. After six weeks on a feeding tube and repair of a damaged vocal cord and vocal rehab, I had begun to heal. Months later when the foramen hole was successfully closed I found out that the small hole in my heart had nothing to do with my CFS. In fact my primary complaint of disabling fatigue had worsened.

Over the years there have been innumerable and less dramatic visits to every variety of healers hoping to restore or at least get appropriate treatment, without success. All this waste of efforts, so many detours, so much added suffering and pain for nothing, not even an appropriate diagnosis to consider before going in with the knife. I had to do the research, diagnose my own condition and educate the doctors. They had little or no knowledge of ME-CFS. A lot of patient harm can come from a culture of medical ignorance.

We do need a great deal more research with a differentially defined population, a great deal more medical education and a profound caring and respect for individuals inflicted with this devastating disease. ~Posted by: 5341, Oct 27, 2015

Interesting, but not totally accurate
Re: Chronic fatigue syndrome: The male disorder that became a female disorder
I got CFS in 1985. I created systems software, so I felt myself capable of doing research in hopes of finding a cure for myself (Lorenzo's Oil was a big back then). Back then CFS was called the "Yuppie Flu"; the cause too much hard work in the office & trying to keep up w/ the Jones. Now 30 yrs later, I'm treated as a lazy depressed person & Lorenzo's Oil did not really help Lorenzo's family at all..

The same happened with Neurasthenia. At first a disease of the upper elite, by the 1920s, it was thought to be psychological w/ a book "The Nervous Housewife" describing it.
What bugs me is that every time outbreaks of ME have appeared in our history (one coinciding w/ the initial Polio outbreak & another in the 1960s, were it got it's name), the medical community does not recognize it. They think it is something new & are all alarmed. They spend a small amount of time investigating, before they become overwhelmed by ME & move on (Fauci actually tried to study CEBV in the beginning & gave up). Then we are struck to endure the ravages of this disease as it progresses w/ no doctor able to tell u s what to expect (the CFS specialists of the 1980s & 90s have long since retired).
And every couple of years a news story comes out stating that ME/CFS is a real physical disease. And I'm supposed to get excited about that? I've heard that Headline since the 1980s. I;m 60 years old. Got sick after surgery around my 30th birthday. I've been sicker longer than I've been healthy & that depresses the hell out of me. ~ Posted by: LivinStateOHope. Oct 27, 2015

Low Blood Volume in ME/CFS References
Re: Blood Volume in ME/CFS
Someone might find this useful. (The title of reference #8 has been corrected, below.)

1. Streeten DH, Thomas D, Bell DS. The roles of orthostatic hypotension, orthostatic tachycardia, and subnormal erythrocyte volume in the pathogenesis of the chronic fatigue syndrome. Am J Med Sci. 2000; 320(1): 1-8.

2. Hurwitz B, Coryell V, Parker M, Martin P, LaPierre A, NG K, et al. Chronic Fatigue Syndrome: illness severity, sedentary lifestyle, blood volume, and evidence of diminished cardiac function. Clin Sci. 2009.

3. Stewart J, Glover J, MS M. Increased plasma angiotensin II in postural tachycardia syndrome (POTS) is related to reduced blood flow and blood volume. Clin Sci. 2006; 110(2): 255-63.

4. Fluge O, Risa K, Lunde S, Alme K, Rekeland I, Sapkota D, et al. B-lymphocyte depletion in myalgic encephalopathy/chronic fatigue syndrome. An open-label phase II study with Rituximab maintenance treatment. PLoS ONE. 2015; 10(7).

5. Loebel M, Grabowski P, Heidecke H, Bauer S, Hanitsch L, Wittke K, et al. Antibodies to Beta adrenergic and muscarinic cholinergic receptors in patients with Chronic Fatigue Syndrome. Brain Behav Immun. 2015.

6. Tanaka H, Matsuskima R, Tamai H, Kajimoto Y. Impaired postural cerebral hemodynamics in young patients with chronic fatigue syndrome with and without orthostatic intolerance. J Pediatr. 2002; 140(412-417).

7. Fouad F, Tadena-Thome L, Bravo E, Tarazi R. Idiopathic hypovolemia. Ann Intern Med. 1986; 104: 298-303.

8. Streeten D. Role of impaired lower-limb venous innervation in the pathogenesis of the chronic fatigue syndrome. Am J Med Sci. 2001; 321: 163-7.
~Posted by: druthers, Oct 18, 2015

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