Recovery, Relapse And Recovery (The Recovery/Recovering Stories #III)

October 3, 2009

Posted by Cort Johnson

The Recovery/Recovering Stories - stories from ME/CFS patients who have experienced significant recoveries. The diversity of recovery stories indicates that ME/CFS is indeed a very heterogeneous disorder; any story may or may not apply to a given individual.

Martha Kilcoyne detailed how she fully recovered from a severe case of chronic fatigue syndrome in ‘Defeat Chronic Fatigue Syndrome Now’ .  Martha’s recovery resulted from her doing many ‘small’ things right and to her uncovering a physiological problem she was able to remedy. She celebrated her recovery by climbing Mount Kilimanjaro and had been healthy and disease free until a series of stubborn infections plunged her, to her dismay, back into the soup again.)

A Guest Blog From Martha Kilcoyne

I wanted to share some new insights into CFS that we discovered this past winter. I had experienced a series of colds layered over a stubborn sinus infection which dragged me down for a few months. At first, I thought it was just an unlucky string of viruses but then I began to recognize the old CFS syndrome that I suffered with in the mid nineties. I spent a week in denial before I admitted that this was a recurrence. It was the same “sick” feeling that I never did find the right words to describe. Of course this time, it was just the beginning of something that was far from the totally debilitating illness that I had before.

I immediately started following the eight step protocol. And I must honestly admit that I had been breaking many of the rules for a long time and getting away with it. I had been short changing my sleep needs, ignoring my energy levels by pushing too much, neglecting to take simple basic daily supplements and forgetting to maintain the most rudimentary aspects of reasonable self-care. Ok, so I’m human.

After a couple of focused weeks on the protocol, I was significantly improved. But I still had a degree of that “sick” feeling that I couldn’t shake off. As part of the protocol, I had been drinking plenty of water and taking a sodium supplement to support an optimal blood pressure. So I decided to add a 12 oz can of vegetable juice (tomato based – not low sodium) in the afternoon as a pick me up to see if that could help me get some energy through the rest of the day. I continued to follow the rest of the protocol and in a week I was feeling significantly improved. After a month, I was feeling great and the “sick” feeling was gone.

Ion Channelopathy – My husband, John the biochemist, asked me if I had ever looked into ion channelopathy as part of my original research. The answer was no. I decided to start by reading up on the known diseases that are associated with ion channelopathy. And here’s where the disclaimer comes – I am not a scientist nor do I pretend to understand the intricacies and interdependencies of the human body’s biochemical pathways. Any ideas that I put forth are those of a lay person. But I do believe that sometimes scientists benefit from someone who steps back from the bark and takes a good survey of the entire forest.

As understood by a non-scientist, ion channelopathy is a malfunction of the ion channels of the cellular membrane. These channels allow for the successful passage of ions into and out of the cell. These ions are prominent components of the nervous system and support rapid changes in cells, such as cardiac, skeletal and smooth muscle contraction, and epithelial transport of nutrients and ions.

Most ion channelopathies are diagnosed in infancy due to the severity of malfunction. Some are known to have adult onsets. From a non scientist’s perspective, the known diseases of ion channelopathy include migraines, epilepsy and two categories of muscle malfunction. The first presents as severe muscle pain and paralysis which is relieved by movement and simple exercise. The second presents as severe exhaustion and muscle stiffness which is worsened with exercise. The parallels between fibromyalgia and CFS were striking to this non scientist.

The symptoms of known ion channelopathies include muscle weakness, muscle stiffness and paralysis, muscle discoordination and pain, abnormal cardiac rhythms, sleep disorder and memory loss. Sound familiar? Could there be milder forms of these more debilitating diseases?

The specific ions involved with these malfunctions are sodium, calcium, chloride and potassium. The presentation of a specific disease is dependent on which channels malfunction and can involve just one ion or any combination of two or more. Ion levels can be too low, too high, not in the correct ratios, present in the blood stream but not in the cell and vice versa.

I immediately checked out the label on a 12 oz. can of vegetable juice. As expected, there was almost 700 mg of sodium in the form of sodium chloride – common table salt. Unknown to me, there was also an equal amount of potassium. It also contained some calcium (which for me is supported by a daily supplement and a diet containing skim milk, cheese and yogurt). Essentially, I was drinking a high dose ion cocktail which could be readily absorbed into the bloodstream.

My reasons for drinking vegetable juice during my first, debilitating bout with CFS, were to increase my blood volume there by increasing my low blood pressure. And I also believed that I was suffering from a long term lack of sodium in my diet. I corrected this by drinking several glasses of water a day, taking a salt tablet once a day and drinking a can of vegetable juice once a day. This was done under the supervision of a physician to ensure that I didn’t develop high blood pressure. At that time potassium and chloride were not part of an intentional treatment as they were not being considered.

During the past winter, I didn’t add vegetable juice at first as I felt that I had been getting enough sodium in my diet of late. I only added it when I thought my blood volumes might be dropping, later in the day.

So what does all this mean?

Are ion channelopathies part of the CFS equation? If you search the web for both, you will get several hits from researchers who are investigating a possible connection.

Could I have corrected an ion channelopathy by drinking a high dose ion cocktail once a day? Could this have given the body’s natural regulatory pathways an opportunity to reset to normal over time? Are there downsides to such a treatment which would require monitoring other than high blood pressure? I found no definitive answers for now. My only contribution is an anecdotal case study of one. And CFS being a wastebasket diagnosis, I offer this that it may be helpful to some.

Be Well Again, Martha

Recovery/Recovering Stories

5 comments

{ 5 comments… read them below or add one }

Joanne October 4, 2009 at 12:26 am

Well written and interesting points.

My ME/CFS/Fibro/Polymyalgia rheumatica turned out to be lyme disease and on long term antibiotics all my symptoms have improved 100% and I have my life back after 6 1/2 years chronic ill health that led to me being retired from the civil Service on ill health grounds.

Many of the people I speak with on Eurolyme in fact 75% had a previous diagnosis of ME/CFS. Because blood tests are only about 50% reliable there will likely be many more who are not properly assessed for Lyme Disease and with the IDSA current review on the guidelines it will be a long time before our doctors and consultants are up to speed to properly assess us.

One of the treatments suggested for Lyme is Salt and vitamin C. Of course there are many who criticise this, your post probably supports the affect of salt and certainly with Lyme many of us suffer from poor circulation especially to the extremities of course there are alternative support for that ie. Ginko. However if people have lyme although the immune system can cope at varying levels if we are sufferring chronic ill health then antibiotics are the real answer to get on top off a bacterial infection. Which and how long is the real question.

My story is on my blog bottom right hand column and top right are links into many useful articles and research.

Reply

Diana October 4, 2009 at 8:56 pm

Well, my very first reaction to this was this: my rheumatologist was having no luck getting any improvement of my pain and fatigue levels, and insisting that I take large doses of Tylenol, which I would not do.

I ended up seeing a cardiologist for high blood pressure that followed my previously low blood pressure. After his inquiries, he put me on a calcium channel blocker, not the traditional beta blocker. The calcium channel blocker relieved a good deal of my CFS symptoms but not all, of course. Over time, I required extra help to get my BP down and he gave me a beta blocker too. I experienced immediate relief of more CFS symptoms. I assumed that by calming my heart down, I was relieving my CFS of extra stress and strain.

Now I wonder if the calcium channel blocker itself has some rehabilitating effect on CFS because I have gotten steadily better over these years under the care of a cardiologist instead of a rheumatologist. So I’m wondering if this is related to your ion channelopathy theory?

Reply

cort October 6, 2009 at 6:52 am

Without knowing much about beta blockers, etc. it’s sounds like there could be a connection. There has been a lot of interest in channelopathy in chronic fatigue syndrome. Dr. De Meirleir found that a piece of a fragmented RNase L. enzyme appeared to have the capability to block ion channels on the cells. The ciguatoxin epitope Dr. Hokama uncovered that is commonly found in this disorder also appears to disrupt ion channels. Dr. Behan has written a paper proposing that ME/CFS is caused by neurological channelopathies. Gene expression studies often pick up genes involved with ion channels.

http://aboutmecfs.org/Rsrch/NeurologicalChannelopathy.aspx

For me ever since I got ME/CFS I’ve had a craving for salt. I just simply have to have it. I don’t if this is a blood volume issue or a blood vessel issue that’s been a very distinctive part of my illness. Dr. Bell has also found that saline IVs can be very helpful in the short-term for CFS patients.

This is the second time that Martha found that ‘salts’, for some reason, were key to her getting better. Would that that were so for everybody but I think we should all take a look at this issue. My sense is that getting better from ME/CFS right now is more a function of doing a lot of little things well than finding that one big thing.

Reply

Mike Dessin October 11, 2009 at 7:33 pm

Yes, there is Ion Channel dysfunction. I had mentioned this a few months back on Cort’s forum.

Salt would always make me feel much better as well.

Martha, I think your extremely courageous and intuitive.

Keep up your good work Martha!

Mike D

Reply

alison October 13, 2009 at 6:44 am

I was diagnosed with CFS when I was 28, but my first problems began when I was 23. Today I am 39 and completely well. It took me eight years to sort out my mess and I’m still learning much about my body and myself. My whole story would be a really long one–it would require a book, which I don’t feel I have in me right now. Life has taken a dramatic turn that I feel is more valuable to invest my time and energy in. That being said, I cannot leave this experience of healing behind me entirely if there are those who are suffering, perhaps, the same syndrome that I suffered and could benefit from any piece of my experience.

When I became ill there was very little known about CFS at all. It was hardly even named, yet. Still, I’m not sure that everyone who has been grouped under this category is suffering their similar symptoms from the same causes. That complicates matters a lot. So, please just take from what I have to say what works for you.

There are a few key things that I did initially that helped me regain my health. I’m going to plainly list these because to explain it otherwise would have me rambling on and on…
1) Addressing Environmental toxicity– Sauna therapy, nutritional detox support through vitamins/herbs
2) Estrogen dominance– Hormone re-balancing through elimination of exogenous estrogens and support of thyroid through nutrition/vitamins
3) Desensitization overactive immune and boosting immune health– acupressure (NAET) and immune support through nutrition/vitamins
4) A lifestyle of reduced toxic exposures from air, food, water.

The above things got me back on my feet, but still I had a sense of a dramatic ‘out of whack’ situation with my ‘energy’, my ‘energy field,’ if that can be understood. The energies underlying my whole system seemed dramatically out of balance. I felt that this tentative health I had regained could be pushed off and I would crash again at any moment if I slackened any piece of my regimen.

I really got my sturdiness and vitality back through yoga–first practicing hata yoga in neighborhood studios, but later from the real Indian yoga with an accomplished yogi named Sadhguru… I was very skeptical about gurus, but I had read many Buddhist things and had some openness to meditation. Sadhguru’s programs had been highly recommended by someone whom I trusted, so I went to a talk that he gave. There I asked one question.

I mentioned some experiences that I was having which felt like my energy moving up into my head, making me dizzy… He paused, looked at me intently, and then said, “Oh, that is very dangerous. You need a foundation.” So I learned and began practicing his yogic kriya. Within 3 MONTHS, I was solid. This is not a joke. After 8+years of crushing fatigue, vomiting, ups, downs, losing my job, divorcing–the works!… 3 MONTHS after the program, I was solid. I’m sure all I’d done for my physical body to that point must have had an impact on how well the kriya worked for me. However, nothing had done so much for me so fast.

Much later, in a group discussion with Sadhguru, someone asked him a similar question to mine and he said (paraphrasing), ‘It is a shame that in the West there is no understanding of the spiritual process. If someone begins to awaken spiritually, they end up either in the doctor’s office or in the psychiatric ward.’

This is not to say that every health problem or psychiatric diagnosis has a spiritual basis, but for me it was a major, probably THE main factor. I’d never had any idea before this experience that spiritual growth was beyond some sort of religious belief system or ideology–that it had to do with anything more than moral discipline, or passion for humanity, or unconditional love, or some such. But now I know from experience. Spirituality is a true process of the energy of one’s own system–it is a natural process of development, as much as one’s physical development. And, in the same way as physical development, it seems it can go through growth spurts and growing pains. In India, ‘Kundalini rising’ is commonly understood to be the beginning of a spiritual phase of life and is known to be physically and mentally risky if it happens in big bursts or in an ‘out of balance’ way. That was the original purpose of yoga practice–it is to foster the spiritual unfoldment of an individual.

I would say that if your CFS/ME symptoms seem like a nervous system problem that comes and goes, your symptons constantly change, and noone can find any basis for your illness, than Kundalini may be at play. If you are, at the same time, experiencing new ‘understanding’–ah-ha moments where your perception or vision of reality is enhanced or deepend… and perhaps occasional extreme highs–ecstatic states of love, compassion or blissfulness that, maybe, you soon crash out of–than it is highly probable Kundalini is at play.

I am definitely not an expert on this… Also, avoid buying into too much you read from New Age books and beware of the panopoly of pseudogurus, including those from India. One of the better, experiential books I read was “Living with Kundalini” by Gopi Krishna. ( http://en.wikipedia.org/wiki/Pandit_Gopi_Krishna)

If you read this book and feel this IS happening to you, than the only recommendation for a safe practice to stabilize your energy is Sadhguru’s. You can find out more about his programs at http://www.ishafoundation.org

Best of luck on your path to regain health and vitality! Much love, =)alison

Reply

Leave a Comment

Previous post:

Next post: