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How I Recovered From ME/CFS

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Author’s Note: Four components went into my recovery: the prescription drugs testosterone and anastrozole along with the supplements cinnamon/chromium and l-lysine. The explanation of their significance and use is beyond the scope of this article. However, their use must be managed through appropriate medical tests and attention to symptoms.

While there is a lot of debate concerning testosterone, particularly in women’s health, testosterone is fundamental to the health of all people. The physician who treated me was Dr. Lewis Spangler in Fort Myers, Florida. (His office may be reached at 239-277-9999.) In the end, the basis for my recovery from ME/CFS was more about understanding what is happening in our bodies than about what we take to bring about the necessary changes.

By John Bochenek

In my life I will forever remember 2013 as a bad year. Just the same, I will remember 2014 as the most incredible and exciting year that I have ever experienced. The dramatic difference is captured in these two photos.

 

The first was taken when my Florida driver’s license needed to be renewed upon my birthday in January of 2013. It was a dismal moment when I stopped and looked at the photo on my new ID. While I hated the picture, what I hated even more was the state of health that ME/CFS had put me in. The second photo was taken in September of 2014. Needless to say, I was experiencing life in a completely different way by this point in time. Indeed, I felt as if I had won a lottery.

In order to bring hope to those who suffer from ME/CFS, I wish to share my journey of the past year with you. I am optimistic that my experience is not unique and may be enjoyed by others who suffer from ME/CFS.
 
Trying To Understand the Origin of ME/CFS

For those who have been readers of Pro Health articles for some time, you may have seen an article published in February of this year that was written by me. It detailed a hypothesis concerning the nature of ME/CFS. The hypothesis was that ME/CFS is the result of a faulty feedback loop between immune function, endocrine function and mitochondrial performance. It concluded that endocrine function needs to be balanced with the current level of immune function in order to restore the feedback loop to its proper state. It also concluded that difficulties in treating a long-term patient were due to high pathogen levels which build up over the many years that a patient has suffered from low natural killer cell cytotoxicity. The hypothesis holds that when treatment improves NK cell function, high inflammation may result from the increased cytokine activity of the NK cells that are dealing with those abundant pathogens.

While the concepts of the hypothesis might be debatable, and only time and data will tell whether or not the concept is correct, it was the basis for my recovery. Without employing the principles in the hypothesis, the second picture showing my recovery would never have been possible.
 
A Painful Year

I was diagnosed with pneumonia in April of 2013 upon an emergency room visit. After recovering from pneumonia, I spent the next three months sitting in my apartment each day. The only time I ventured out was for a medical appointment or to go to the store. I was thankful that I could still do as much. But even a walk through a store would bring on chest pain and shortness of breath. Finally, my feet began to swell and foot tissue began to decay, presumably from poor circulation. I honestly felt that my days were numbered.

Perhaps most painful of all was my withdrawal from the world. Despite my condition, no one understood what I was experiencing. I even stopped communicating with family members.

At the same time, like many others with ME/CFS, I had spent years looking for answers both by having exhaustive medical tests performed and researching the results of those tests in the National Library of Medicine database known as Pubmed. After doing so for four years, I had a certain level of confidence that the hypothesis had merit. The final test that led me to believe I was on the right track was a muscle biopsy performed by The Mayo Clinic in Jacksonville, Florida.

The results were being analyzed at the same time the driver’s license photo above was taken. While the results were judged inconclusive, the particular result that stood out in my mind was the inability of the labs to read a value for ATP synthase in my mitochondria. This provided support for the faulty feedback hypothesis that I thought might explain ME/CFS.

After discussing the hypothesis with a number of doctors, I began seeking treatment to implement a solution after recovery from the pneumonia episode. In August of 2013, I began treatment under the care of Dr. Lewis Spangler in the form of testosterone and anastrozole. As time passed and symptoms and test results changed, the hypothesis provided a basis for understanding how my body was responding, and for adjusting my treatment.

While I experienced a benefit in the first month of treatment, it was apparent from the start that my symptoms would take some time to correct. I began to experience more energy to do the things I wished and a reduction in pain. It wasn’t long before I tried riding a bike that was assisted by battery power. Use of this bike in the past had led to an uptick in symptoms, including the swollen and painful lymph nodes that produced some of the appearance seen in my driver’s license photo. While this no longer occurred, I still experienced some post exertion symptoms. So after two months of trying, I decided to let my body rest and recover.

As the year drew to a close, I was losing weight (more than 30 pounds by the end of 2013) and my health was noticeably better. Yet there were some troubling signs in the blood tests that were being done periodically; namely a rise in blood glucose and a sharp increase in C Reactive Protein (CRP), which is a measure of inflammation. These numbers did not make sense in a traditional sense. After all, blood sugar should drop for an obese patient who is losing weight, and it should also drop in a patient who has stopped taking prednisone, as I had. So there were still some problems to be addressed.
 
A New Year and A New Life

With the start of 2014 I was hopeful that my recovery would continue. Yet I was reaching a point where treatment would have to be suspended if my inflammation and glucose levels were not controlled. By mid-March, a supplement was added to my treatment in order to help control the situation. The combination of cinnamon and chromium acts as an immunomodulator that reduces inflammation. By the first week of May, six weeks later, blood work showed that my glucose, CRP and Hemoglobin A1c were all in the normal range. Hemoglobin A1c – which is used to diagnose diabetes – had dropped substantially.

This was also the point at which I was able to cease taking methotrexate, hydroxyzine and topiramate. These three, along with prednisone, were being used to control my situation prior to beginning the new treatment in August 2013. In addition, regular exercise became possible at this point without post exertion problems.

By mid-May I felt I was in full recovery. One more supplement, l-lysine, was added to help control and reduce over-abundant viral pathogens. L-lysine acts as a natural antiviral by replacing arginine in the DNA sequence of herpes viruses (like Epstein-Barr or cytomegalovirus). This replacement makes it difficult or impossible for herpes viruses to replicate. By this point in time I had lost 50 pounds.

Over the summer months, my progress continued and my life became one good day after another. To celebrate, I traveled to Yosemite National Park and enjoyed hiking and sightseeing for a week. Then later, I went home to Ohio to visit family and friends. They were as surprised by the new person they saw as they were generous in their warm wishes for my good fortune.

My exercise level continued to increase throughout the summer. I now bike 300 miles a month and enjoy paddleboarding on off days. I have covered up to 50 miles in a single bike ride, and my weight is down 85 pounds from a year earlier (while my diet is less restrictive). Other activities which were unthinkable before have also made their way back into my life. I am a volunteer at a wildlife animal hospital, I am flying airplanes on a limited basis, and I recently started ballroom dance lessons.

It is difficult to put into words the feelings of gratitude and joy that greet me daily. It has become everything that I had hoped for during my ten years of ME/CFS and even more. I only have one further wish; that each and every person who has endured the curse of ME/CFS will find their way back to the goodness of the life they once knew.


About the Author: John Bochenek is a former airline pilot for United Airlines. His career was ended when he was afflicted with ME/CFS in 2004. After recovering from ME/CFS in 2014, he is now assisting Doctors Lewis Spangler and Marc Schneider in the treatment of patients with ME/CFS. A special thanks goes to Cathy Pisano Photography of Naples, Florida

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27 thoughts on “How I Recovered From ME/CFS”

  1. IanH says:

    However I am not aware of any evidence for this:

    “The hypothesis holds that when treatment improves NK cell function, high inflammation may result from the increased cytokine activity of the NK cells that are dealing with those abundant pathogens.”

    1. IanH says:

      If you start with a wrong diagnosis you can “create” all manner of hypotheses about its cause and treatment. What is described here is not M.E. hence the vagueness of the hypothesis and conclusions drawn from the treatment protocol.

    2. me/cfs says:

      Ian I appreciate the discussion you have initiated after taking the time to read this article. I also thank you for your kind words.

      I would also like to make clear that my response is my own opinion and in no way represents Pro Health or anyone else.

      I will try to answer your questions in a brief manner:
      1. Many pathogens were elevated in the diagnostic testing by Dr Klimas which included Epstein-Barr, cytomegalovirus, HHV-6, Parvovirus. At one point a few years back I even tested IgM positive for Epstein-Barr which is the indicator for an acute infection (and highly unlikely for anyone beyond 40 yrs of age as 99% of the population has already experienced the virus by that point).
      2.C reactive protein (CRP) has been a common inflammation test throughout my experience. The threshold for a positive test is 3 which I was typically found in the 3 to 4 range. The spike I refer to in the article saw my CRP near 10! This despite the fact that I was looking and feeling healthier. Although any evidence from my case is anecdotal, I consider this to be a significant finding that demonstrates the possibility of NK cells “powering up” and taking on the overabundant pathogens.
      3. I did have a cytokine profile at Klimas office and it showed a variety of cytokines that were high or low. Their interpretation of the low ones at that time was an exhaustion of supply.
      4.While I did not have any analytical tests for depression and I did not exhibit any signs of depression, antidepressants were the favorite solution of many doctors who saw me early on (I was tried on four types with poor results). So at the Mayo Clinic I requested a consultation with a psychiatrist. Her evaluation of my case concluded that there was no psychiatric basis for the problem and I should not be on psychotropic medicine. Her opinion was that it was an unresolved medical issue. Further she pointed out that the sleep doctor who saw me at Mayo was a psychiatrist as well and that his opinion was in agreement with hers.
      I would like to add that ME/CFS patients who do experience depression may do so as a result of poor NK cell function. It has been identified in patient populations who experience depression.
      Further, before the advent of antidepressant meds, testosterone was used in male patients to treat depression. (but proper testosterone levels in female patients is perhaps even more important as they have a lower amount than males to begin with and testosterone is the most biologically active hormone in females).
      5. While I was never diagnosed with metabolic syndrome, it likely was in the picture. However, the essence of my hypothesis concerns the metabolic process of the body. The top priority of the endocrine system is to control the metabolic process and mitochondria are a key element in metabolic function.
      6. I had extensive cardiovascular tests and some kidney function tests. The cardiovascular tests revealed a patent foramen ovale (PFO) in the atrium of my heart which is common among ME/CFS patients.

    3. Jeremy-Admin says:

      Like you, I see recovery from CFS and/or Fibro as being largely individual through a re-balancing of biochemistry to recover a symptom free homeostasis. Biochemistry is complex (and homeostasis somewhat unique) so this is no easy challenge.
      IMO, when the biochemical balance of any system becomes imbalanced (for any reason) – it will cause imbalances in virtually all body systems. Once a system (such as endocrine, digestion, immune or neuro) becomes imbalanced beyond a certain threshold, it becomes a problem in itself that will keep all biochemistry (all systems) out of balance. As well, once beyond a certain threshold – a system deregulation will not correct itself even if the original cause of the imbalance (in another system)is identified and intelligently addressed and supported. At this point, it no longer matters which system deregulation was primary and which are secondary. After disease severity has affected multiple systems significantly – all major affected systems will require (simultaneous) support – to recover a symptom free homeostasis. In some cases, the homeostasis may have to be “jogged” (with a temporary measure)to escape the “sick homeostasis” (or self-perpetuating loop) of chronic disease.
      The challenge is to become educated and conscious enough to understand the meaning of your personal reactions to support trials, and/or to find a Clinician who is both able and willing to take on the task of re-balancing multiple systems (to shift your entire biochemistry to a symptom free homeostasis)- and to do it in a reasonable period of time, without breaking the bank. In my experience, such Clinicians are difficult to impossible to find.
      For me personally, gastro (absorption and detox) impairment is playing a major role – in addition to endocrine, immune and neuro dysfunction.
      Congrats on your recovery, and thx for sharing. Your story is an inspiration.
      – DaveW

      1. me/cfs says:

        Thank you Dave. Best wishes toward your recovery.

      2. nilagold says:

        I can admire what you have overcome.. My CFIDS would never stand a cource of steriods… That is because I have EBV virus, CMV virus and Herpes six A virus ( at various titer 1gg rates over many years) Steroids put me back in bed where I could not hardly move!!!!
        The help I have had in the past that worked was Naltrexone low dose 3 mg.. Proven to improve Natural Killer Cell Ratio and improve white cell count.. Right now I can’t get Naltrexone …
        I am in agreement with all of the treatments including lYSINE, CINNAMIN AND CHROMIUM . I also added food grade hydo gen peroxide carefully in the self proclaimed thought that I needed more Oxygen in my Blood.. This is why I believe we are arrobic exercise intolerant.. that and the swollen brain from the above active viruses..
        I also know this… getting on a high protein no sugars or starch diet and careful on fruits ( sugars)and vegtables( no starch) no bread..
        Rice cereals and rice crackers. Eggs and cheese bacon ok!!! This has helped me so much in the past.. Hard to do but it did get me well..
        One thing that is probably the most important thing is getting better or dealing with any chronic disease.. Spirituallity… I give my day over to the higher power of the universe… I surrender to what I can’t control one day at a time.. Then I try hard to keep the thought with me all day.. some believe that God is within. The little voice intuition that we sometimes don’t believe.. Decisions are very hard with the Brain inflammation ( fog)..
        I have spent 50 yrs. with this illness and some of my decisions were not good ones.. Created stress..lots of stress..
        Anyway, I end my day by counting my blessing out loud.. Hard to do when you are so ill..
        Right now I am in a stage of exerbation because I lived with a man that had a very bad case of stoic emotional behaviors, tourettes and complusive obbcessive behaviors. I have to say, we thought that we would help each other out.. I got lots of help and I’m open minded.. He is closed off and lives in denial.. So I pulled myself out of this, sick as a dog and 75 years old. I am alone and getting better.. We are friends now and I see some movement on his part to get help!!
        I remain your friend always.. and celebrate your victory..!! Nila Shea

      3. me/cfs says:

        Hi Minivette, I was out of the country for a while and just saw your most recent posts. I am glad you are making some progress.

        A robust endocrine profile has been my most successful way of improving mitochondrial function (testosterone/anastrozole). However, a few years back I did have limited success with a trio of supplements for mitochondrial support. Those three were Acetyl L-Carnitine, R Lipoic Acid and CoQ10. There are articles in the Pubmed library that back these three as improving mito function. Also a medical book titled “Mitochondria and the Heart” (written by a cardiologist named Jose Marin-Garcia) spelled out these three as being life saving for patients that had poor heart muscle function as a result of mito problems. I recall that I would take them for about three days before having to let my system recover for a day or two, then another three days and so on. A Pubmed article that led me to recognize the importance of testosterone in women was a clinical trial with elderly women who were experiencing congestive heart failure. The study pointed out several benefits experienced by the group that was administered testosterone http://www.ncbi.nlm.nih.gov/pubmed/20888520. The conclusion states: “Testosterone supplementation improves functional capacity, insulin resistance, and muscle strength in women with advanced CHF. Testosterone seems to be an effective and safe therapy for elderly women with CHF.”

        I no longer need these three supplements or other supplements that I was once on. I believe it is as a result of now having normal mitochondrial function. For example, I recall that I had low B-12 for years, and even with intramuscular injections, I was unable to raise it to the low end of normal. After being on testosterone/anastrozole for one month, B-12 was checked as part of my regular blood work. My B-12 was not only above the upper end of normal, it was beyond the level that the lab could measure!!! I have not needed to supplement since. All other supplements have been reduced or stopped as well (I still take some magnesium and potassium on days when I experience sore muscles after exercise.) If mitochondrial performance is normal, it seems that many of the supplemented items are back in natural balance or above.

      4. hopeful2day says:

        Hello. I’ve had cfs/fm since about 1995. Finally was diagnosed with mercury poisoning about a month ago.And chronic viruses (3) and 1 digestive bacteria.
        Just wondered if anyone else had mercury toxicity?

        So glad to of found this group tonight!

    4. minivette says:

      Hi John, do you know what lab did the cytokine test or the title of that test? And, what was the treatment for abnormal cytokine levels in your case or others you may know of? I know about the studies showing high pro-inflammatory cytokines and low anti-inflammatory cytokines. I am grateful to FINALLY have a great Dr who is an MD AND board certified integrative and holistic med so she has access to quite a bit of specialized testing. Thanks for any info!

    5. me/cfs says:

      Hi Minivette, I hope this will help. My testing was done in 2012, so things may have changed, but at that time Dr Klimas was using a lab at the University of Miami that was called “EM Papper Laboratory of Clinical Immunology” Ph: 305-243-6288, Fax: 305-243-4674

      In addition to the cytokines, they did a flow cytometry of peripheral blood that measures components of the immune system in detail. Mine indicated that B and various T cell components were high. Also a test of NK cell function was done. Mine was near zero at 1.95%.

      The treatment suggested was a combination of supplements. The problem that I had (and I believe this is true of others), is that after taking the supplements for a couple of days, fatigue and pain symptoms can be detrimental. I also experienced this with other treatment ideas that I tried over the years. My hypothesis is that while various treatment options do help, when the NK function begins to increase, the inflammation caused can be too difficult to deal with.

      The other test you may want to consider is a muscle biopsy. While I had an open biopsy, a needle biopsy (less invasive and painful) is sufficient to retrieve enough material for a mitochondrial analysis. This can be done through the “Clinical Laboratory – Genetics Buffalo General Hospital” Ph: 716-859-7741 Fax: 716-859-7749

      The combination of NK function and mitochondrial ATP synthase is a way of looking at the function of my hypothesized feedback loop. If both are very low, (as it has been demonstrated that suppression of ATP synthase will lead to low NK function) it is evidence that the entire feedback loop is compromised.

      Best of luck!

      1. minivette says:

        John, thanks so much for all the info! I just started hormone prescription cream as my progesterone was 1.9 and normal for my age is 2.6-21. Besides that I am also just starting an adrenal gladular supplement for adrenal support that I got from my Dr, and flucortisone to help w/ POTS syndrome that is most noticeable when having a flare…probably in part b/c when one must sit/lay around quite a big the muscular support in the legs that helps w/ venous return gets deconditioned as well as definite ANS/sympathetic nervous system dysfunction…it is also called “sympathotonic orthostatic hypotension.” I need to try Meyer’s cocktails per my Dr as well as Dr. Teitelbaum, Rolfing per my Dr as I have had extremely tight muscles at times though magnesium orally helps some, and Thymic protein per my Dr and Dr. T as chronic/long lasting viruses and viral re-activation is a thing. Additionally I need to do complete and send off Genova Labs GI Effects and SIBO (small intestine bacterial overgrowth) test also which I have. However, an underlying thing which I know is an issue is lack of energy which prevents quite a bi and fatigue in my chest.

      2. minivette says:

        John, thanks so much for all the info! I just started hormone prescription cream as my progesterone was 1.9 and normal for my age is 2.6-21. Besides that I am also just starting an adrenal gladular supplement for adrenal support that I got from my Dr, and flucortisone to help w/ POTS syndrome that is most noticeable when having a flare…probably in part b/c when one must sit/lay around quite a big the muscular support in the legs that helps w/ venous return gets deconditioned as well as definite ANS/sympathetic nervous system dysfunction…it is also called “sympathotonic orthostatic hypotension.” I need to try Meyer’s cocktails per my Dr as well as Dr. Teitelbaum, Rolfing per my Dr as I have had extremely tight muscles at times though magnesium orally helps some, and Thymic protein per my Dr and Dr. T as chronic/long lasting viruses and viral re-activation is a thing. Additionally I need to do complete and send off Genova Labs GI Effects and SIBO (small intestine bacterial overgrowth) test also which I have. However, an underlying thing which I know is an issue is lack of energy which prevents quite a bi and fatigue in my chest.

      3. minivette says:

        John, thanks so much for all the info! I just started hormone prescription cream as my progesterone was 1.9 and normal for my age is 2.6-21. Besides that I am also just starting an adrenal gladular supplement for adrenal support that I got from my Dr, and flucortisone to help w/ POTS syndrome that is most noticeable when having a flare…probably in part b/c when one must sit/lay around quite a big the muscular support in the legs that helps w/ venous return gets deconditioned as well as definite ANS/sympathetic nervous system dysfunction…it is also called “sympathotonic orthostatic hypotension.” I need to try Meyer’s cocktails per my Dr as well as Dr. Teitelbaum, Rolfing per my Dr as I have had extremely tight muscles at times though magnesium orally helps some, and Thymic protein per my Dr and Dr. T as chronic/long lasting viruses and viral re-activation is a thing. Additionally I need to do complete and send off Genova Labs GI Effects and SIBO (small intestine bacterial overgrowth) test also which I have. However, an underlying thing which I know is an issue is lack of energy which prevents quite a bi and fatigue in my chest.

      4. minivette says:

        Oops! I hit one button (typing in the dark ha) and my post went away and posted 3 times! Wish I could edit that. So, I really think I have some mitochondrial dysfunction going on but I need to address all the other items in line before more tests would come into play. **What supplements or treatments were you given or have you tried that have helped w/ the mitochondrial dysfunction or lack of ATP synthase?* I know there are supplements containing ATP but I don’t know how effective they are vs taking the building blocks for ATP. I am taking D-ribose (maybe not enough…only around 1,500mg-2,000/day whereas Dr. T says to try 5,000mg in the AM), and Malic Acid and Magnesium Citrate amongst other things. My next Dr appt is 1 mo out (just had one) so I plan to address all the items I listed and then ask about the mitochondrial analysis test and cytokine panel as well as an amino acid panel at my next appt. Not sure how accurate urine neurotransmitter tests are but I know my Dr does those too and I might do that in the future. Even after 8-10 hours of sleep I have lines under my eyes and am dark under my eyes…this happens during flares even when otherwise don’t feel ill except exhausted and perhaps a bit low temp which I frequently have during a flare or as I call this time a re-onset since it was like it hit me all over again like 8 yrs ago when first started though thankfully less severe. My thyroid is fine according to lab tests…T3 and T4 are not borderline but look solid if the tests are to be believed as accurate enough through Quest Diagnostics (they are Drs top choice around here for a commercial lab service). I know Dr. Teitelbaum treats low temp w/ thyroid med. I’m thinking in my case it’s more a low immune thing. My NK function is fine according to an immune panel. Thankful for that! I do get a bit low in 1 or 2 types of white blood cells when at a major low eb w/ CFS (had a low/moderate re-activation of parvo virus B-19/cheek slap when was struck w/ this 8 yrs ago)…the thymic protein (Pro Boost or for short term use Thymuril which has high dose vita A etc) should help immune function and a glutithione pre-cursor supplement called Immunocal (in the PDR under med but nutritional) normalized the slightly low white blood counts before. My Dr said a Liposomal Glutithione supplement is actually one that has come out which is more effective now supposedly. Thanks for all the insight and sharing of your experience, we appreciate it! : )

      5. asmigiel says:

        You should’ve explained what is the disorder ME/CFS. It is inappropriate to advertise to people that are in pain and desperate for relief- a treatment but not explain the disorder in which it was taken for by the author. As a nurse I do know that cfs is chronic fatigue syndrome- which is usually associated with MD- mood disorder, but ME does not come to mind except in describing a medication as in Mood Elevator. So you need to at least add another paragraph with further explanation. That would make your article more believable.

    6. me/cfs says:

      Dear Hopeful2day,

      While I have not been diagnosed with high mercury levels, a doctor by the name of Mark Hyman MD was and has written a number of articles on Huffingtonpost.com. He relates mercury to his diagnosis with chronic fatigue syndrome. Here is a link to one of his articles http://m.huffpost.com/us/entry/530494. It concerns the importance of the antioxidant glutathione in removing toxins like mercury from the body.

      I hope this will help you find some answers.

    7. minivette says:

      Thanks for the insight. I feel like (and hope!) my body will be in more balance and it will be easier to maintain balance in the future after the endocrine deficiencies are corrected. I recovered before slowly over 1.5-2 yrs in the absence of any hormone/endocrine replacement or stimulating therapy. Just diet, supplements, tons of rest b/c I was forced to by my body, and physical therapy when able. I have only had my testosterone checked in ’06 and it was 44 (range 16-55). I tend to have acne regardless of how clean I am, prescription acne meds etc…though they help. I’m curious as to my testosterone level currently but my skin situation is better now than in ’06 so I doubt it’s much diff or high/low now. Estrogen & progesterone are about the same as back then…low. Hoping the compounded bio-identical primarily progesterone and some estrogen will help skin and overall health. Dr said I could see skin improvement or worsening…but my overall health is the main aim and getting it in normal range. I read progesterone is used to make cortisol and other hormones so it being low can’t be a good thing. My Adrenal Rhythm test wasn’t terrible (in range) but showed a bit of a drop a few hrs after waking. My DHEA was not tested unfortunately (thought was part of Adrenal Rhythmn test) and I have since started Fludrocortisone for POTS and it seems to be helping! BP has been higher (good thing). It is a mineralocorticosteroid vs a prednisone type steroid. Different, as you have discussed diff types of steroids. It should help stressed adrenals but not sure if will boost DHEA and throw off a test for a baseline at this time. I have had slightly low (out of range) vita D for yrs…regardless of sun exposure, dairy enriched w/ vita D, much fruits and veggies etc. I’m a little hesitant on a one time/short-term mega-dose of vita D3 but I’ll talk to the Naturopathic Dr I’m seeing Monday (trying Myer’s cocktail) which works out of my holistic/integrative/md Dr’s office. After 4,000-5,000 I.U. daily for several wks it was at the bottom of normal vs low last it was checked. I do have a partial MTHFR defect and started taking active folate and B-12 a couple mos ago after finding that out. It’s gross, but I have nasal drip pretty much daily (not my norm!) and sometimes have to cough around in AM b/c of it…doesn’t seem to be relieved by allergy med. I think I had this before with CFS. My dad had a CFS flare within a few mos of me and he has the same. Thinking possible yeast or just a low immune thing and symptom of more vulnerability to allergies which usually don’t bother me anymore after antigen injections for 10 yrs. Also could be part of vulnerability to chronic viral reactivation. Caused by cytokines? In whatever case, I got monolaurin (natural anti-fungal/antimicobial) to try. Just started Proboost Thymic Protein A today which my Dr wants me to get on and me too. It helps stimulate the thymus gland in chest to boost immunity. This is stimulated by a hormone (endocrine related/affected), so it makes sense w/ other low endocrine stuff that it could be affected too. Also, I’ve got good hopes about the Myer’s Cocktails and trying those over the 6 wks Dr. Teitelbaum recommends. He reports many feel a warmth in tight muscles as nutrients…magnesium, niacin etc get into muscles. Next on the agenda w/ my Dr’s plan is rolfing. The standard is 10 sessions over 10 wks, but not cheap. Thankfully there is a great certified one nearby, recommended by my Dr. Trained by someone directly trained by Dr. Rolf. She also has a 4th degree black belt in Akido, Master’s in kinesiology, and is a licensed marriage and family therapist! Couldn’t do much better! Maybe she’ll have some wisdom. I read of a complete methylation panel that Dr. Rich VanK mentioned in a Pro Health article which includes glutithione, but do you happen to know of a good (or any) strictly glutithione tests/labs? I know it’s the master antioxidant and oh-so-important. Dr is gonna add glutithione to Myer’s cocktail, and I got NAC to help as well as various other supplements which may help small amounts. I’m also taking Low Dose Naltrexone, and a-Drenal (adrenal glandular complex) which my Dr likes. I’ve been walking daily as of recent, just started Tai Chi (Dr. Lam vids on Youtube) and I’ve been shopping a few times. Also finally addressing a stack of papers that bothered me but I wasn’t up to going through it all. Yay for improvements! PTL. I don’t watch him on TV really, but Glenn Beck’s health story he revealed recently is interesting to me…it sounds CFS/FM-esque. Hormones off, adrenals, etc and he really fell through the medical cracks for a while. So much so that when he finally went to neuro health experts in TX that address tough cases they said he was just about only running on faith. He had low left brain function I believe and other stuff along w/ off endocrine/adrenals. His story here is interested: http://www.theblaze.com/stories/2014/11/10/glenn-beck-reveals-the-life-changing-pivot-point-he-has-kept-hidden-from-almost-everyone-for-five-years/

  2. me/cfs says:

    Ian, I respect your opinion that this is not ME. However, I was diagnosed at Dr. Nancy Klimas office.

    The term hypothesis means that it is a concept that has not been verified by scientific data. So you are correct, there is no data to make this concept any more than a hypothesis. At the same time, I had more than one knowledgeable doctor encourage me to continue my research after looking at what I was developing, and in the end I feel it saved my life.

    1. IanH says:

      you have done amazingly well. I stand in awe of your change. To me your profile does not look like ME and your treatment would be regarded as quite radical for ME. However I cannot criticize your treatment for I do not know what you suffered from but you have clearly made a great recovery.

      I hope you do not find me too pointed or abrupt as
      I am interested in your ideas and any data you have.

      What pathogens were identified?
      Did you have tests to identify inflammation?
      AS you were tested in Nancy Klimas’ office did you go through their cytokine network mapping?
      Did you do any tests for depression?
      From your photos I see that you were suffering from “metabolic syndrome” Were there any tests of cardiovascular function and kidney function, if so what did they show?

  3. Formyinfo says:

    Could fluoroquinolone antibiotics such as Cipro and Leviquin be the cause of some of these issues since they can drastically affect mitochondria?
    How did you address the gut issue that you mentioned?

  4. me/cfs says:

    Nila, Thank you for sharing your touching story. I too consider you a friend forever.

    One important thing to remember, if the course of steroids you are referring to is prednisone or similar, this is a catabolic steroid as opposed to testosterone which is an anabolic steroid. The metabolic process is broken down into the catabolic process which is where the body breaks down components for energy and the anabolic process which is where the body constructs components and new tissue and uses energy. So a catabolic steroid like prednisone is the opposite of the anabolic steroid testosterone.

    I agree with you concerning spirituality. It was and is important for me. Best wishes!

  5. Deadinbed1 says:

    with the multitude of symptoms of M.E./CFS i was thinking maybe milder chronic fatigue only because of ALL the symptoms most of us have from 25-50 symptoms. i slept for 2 yrs., couldn’t awaken then when awake it was as if i was in another world! so SPACED OUT! problem is, i still AM!!! so forgetful, i forget to eat! now WHO forgets to eat???

    oh well, at least you FEEL better!

  6. nilagold says:

    There is a general belief out there that somehow CFIDS is not a physical illness..Those who have it know the truth but it shakes us to think that we are still living in the dark ages.. even thou their are many really great doctors and researchers on our side.. I know you’ve heard this a thousand times BUT THE NAME IS SO FAR OFF FROM THE ILLNESS AND IT HAS presented A REALLY BAD BELIEF SYSTEM FOR ALL OF US. Everybody loses with this name… It’s like calling Diabetes..dizzy, fainting disease.
    I don’t want to get off on negatives. FACTS…we have immune blood tests that are abnormal, we have spect scans abnormal, we have latent virus IGG ( means active in systemic way ) titers for CMV, EBV and Herpes Six.. some have Paro virus.. Inflammation has to be tested in a different way.. Anti Dna or Ana are low or not positive.
    Heart abnormalties in rythem and leakage. Deep acheing into the bone! Intestinal allergies or IBS..
    Mood swings go with the illness.. One can not be human and experience their whole world and quality of living being taken away without anxiety and depression from time to time.. The difference is.. Ask a person with CFIDS what they wish to do today??? If the answer is (nothing)… then that’s depression.. If the answer is ” GET MY LIFE BACK AND GO DO SOMETHING’..that’s not depression. Panic attacks.??.. let’s address this; They just now announced that we have 3 brain abnormalties in an article on Pro Health..Panic attacks are from coping , coping and coping for months on end with severe pain and emotional termoil. They are a direct chemical imbalance from Brain dysfunction.They can come also for a fear of something really scarey..

    Step out of the box!! Any illness has emotional consequences…so it’s time to realize that MENTAL ILLNESS IS CAUSED BY REAL PHYSICAL ATTACKS TO OUR BRAINS BY NEUROLOGICAL IMBALANCES that are caused by real diseases to the brain!! CFIDS people like me spend so much time defending ourselves because we feel mentally ill at times. So it all blends together in the end. Who gives a damn if it’s Mental Illness or CFIDS or Cancer or HIV.. They all make us humans mentally ill . Address everyone as if they had mood disorders that go with their diseases.. Anyway.. I am thankful that we are all having a dialog with each other..WHATEVER YOU DO, DO NOT GIVE UP. DON’T LET ANYONE OR ANYTHING MAKE YOU FEEL YOU HAVE NOTHING!!! STAND UP AND FIGHT.. DON’T FOLD OR BECOME A VICTIM.. IT’S EXTREMELY HARD TO DO WHEN YOU ARE VERY SICK……STILL STAY BELIEVING IN YOURSELF..AND OUR IN COMMON GOOD..WE ARE ALL BROTHERS AND SISTERS AND WE WILL OVERCOME!!!!! I have recovered enough to function, read and enjoy some days..I’ve tried just about everything.Teach a doctor about your illness… Doing is the key.. Get in a wheel chair and go outside! Go lay in a park and look at nature.. Pray..Be thankful..Cry…Laugh…be sad… be scared but let yourself feel…You will get better….I beleive and have confidence in all of us..!

  7. nilagold says:

    Ok.. Thank you for clearing up the steroid differences.. I have tried without help so far to get on testosterone..

  8. Jeremy-Admin says:

    Formyinfo,

    I have no specific knowledge about the two antibiotics that you cited, but in general I do think that antibiotics (by prescription and/or in our meats) may contribute to chronic disease (especially when their disruptive effects are considered in concert with thousands of other synthetic biochemicals that we ingest, absorb and inhale every day). This assault(especially when combined with a diet that exacerbates the problem)can alter the microbial balance in our gut, facilitating opportunistic microbes to dominate that can produce toxins that damage the gut wall (where approx 85% of the immune system resides – likely causing an imbalanced immune response in the process).

    In addition, the opportunistic microbes/toxins impair digestion and absorption, hijack many of the nutrients that we ingest to nurture themselves, and produce high levels of toxins (some of which are absorbed through a damaged/leaky gut wall – instead of nutrients). In a balanced gut ecology these same microbes keep each other in check and act synergistically to support our health. But imbalanced gut flora results in our gut delivering high levels of toxins into circulation, in place of the nutrients that our cells (and systems) require to function properly. Improperly (partially) digested food particles (especially proteins) entering circulation may sometimes mimic body cells, initiating auto-immune responses, or immune responses causing food sensitivities.

    In response to your second question – to deal with this gut/digestion problem, I am implementing a treatment protocol recommended in the book; “Gut and Psychology Syndrome” by Dr Natasha Campbell-McBride, which explains how and why the impaired digestion of a microbially imbalanced gut can affect the brain – and every other body system. After investigating the underlying causes of (my own progressive) chronic disease for 29 years – I recommend this book over any other source for understanding a key underlying mechanism in health, and in chronic disease (physical and mental). I also commend the book for bringing together an unprecedented number of pieces of the biochemistry puzzle, and for providing safe, clinically tested treatment with real potential. It is also an easy and interesting read – even though it conveys some complex science (in layman’s terms). I hope this answered your questions. All the best in your journey.

    DaveW

  9. hopeful2day says:

    Hello. I’ve had cfs/fm since about 1995. Finally was diagnosed with mercury poisoning about a month ago.And chronic viruses (3) and 1 digestive bacteria.
    Just wondered if anyone else had mercury toxicity?

    So glad to of found this group tonight!

  10. terryd5150 says:

    Ran across the article not long ago.

    It was posted almost four years ago, and the discussion seemed to die down shortly thereafter.

    To the author: In the ~4-year period that has since passed, can you say that this protocol provided true long-term remission/cure, or did it simply help you feel better in the short term?

    The lack of activity related to this article strongly suggests it was the latter.

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