Basic Stuff

  • Name: JudyH
  • Country: United States
  • State: California
  • City: Atascadero
  • Gender: Female
  • Age: 77
  • Education: Masters Degree
  • Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
  • Diagnosis:
    • Chronic Fatigue Syndrome (ME/CFS)
    • Autoimmun polyglandular syndrome
  • Year Illness Began: 1963
  • Pursuing a bachelor’s degree in the United States when illness began: Yes
  • Year of college when illness began:

Functioning Interrupted

Former Level of Functionality: 100
(No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work full-time without difficulty.)
Current Level of Functionality: 50
(Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or desk work 4-5 hours a day, but requires rest periods.)

Work Interrupted

  • Former Occupation: Student
  • Years of Work Lost: 15
  • Current Work Status: Retired

Income Interrupted

  • Year Retired: 2011
  • Yearly Income Before Becoming Ill:

    $6,585

  • Yearly Income When You Retired:

    $60,000

  • Minimum Annual Income Loss at Retirement:  

    +$10,953

Other Interruptions

Certified Disabled: Yes

Finances:
  • My parents or other family members have provided financial support
Work:
  • I reduced my work hours
  • I took on jobs with less responsibilities than I otherwise would have
Relationships:
  • I decided not to have children (or have more children)

Most Impactful Loss

I had to step down from leadership roles in my career, which limited my opportunities for both technical and managerial success, and significantly reduced my overall income.

My Story

My non-miraculous, extremely slow, non-recovered, successful life, so far

I first got CFS at the age of 17, and 60 years later I still have it. Given that I am now 77, I am not optimistic about finding a “cure” within my lifetime. My life was definitely “interrupted” – and “re-routed” – multiple times, in multiple ways. In telling my story, I have tried to identify the things that I think have helped me (though of course I can’t prove any of it). Even though I have never “recovered,” I have found ways to manage my health problems to a greater or lesser extent, so that I have been able to lead a reasonably productive and happy life. So here’s my story:

I was diagnosed with mononucleosis 60 years ago, at the age of 17. That was about a year before EBV was first identified. I had been a strong, active, athletic girl, who could out-run, out-climb, and out-bicycle every other kid (boys included) in my class, and I was one of the smartest, to boot.

The mono infection really knocked me down, and it was a struggle for me to get through my final year of high school. I stayed on the girl’s field hockey team, but many times, was unable to play. I spent most of my spare time sleeping. Then I read an article (I think it was in Reader’s Digest, of all places) about how to do self-hypnosis, so I tried it. I found that if I hypnotized myself, and gave myself the suggestion that I would sleep for an hour and wake up feeling as refreshed as if I had just had a whole night’s sleep, I would actually sleep for an hour and wake up feeling as refreshed as if I had just had a whole night’s sleep. That was a revelation!

I kept having “relapses” of the mono all the way through college, but I kept doing the hypnosis, and the relapses became less and less debilitating. After graduating, one of the things I did was to start practicing yoga. It felt good – I loved the gentle stretching and the also-gentle energizing. I got through grad school (master’s in experimental psychology and human learning) and moved out to Los Angeles (sun! beaches! palm trees! a great big city to explore!). Life was good. I loved my career. I got certified as a scuba diver. I got married, and our honeymoon was a week of scuba diving in Cozumel. Before we married, we both agreed that we did not want to have children – a decision I have never regretted, and which eliminated one important source of life stress. My career evolved from psych/educational research to computer science research.

Then at the age of 30, I was diagnosed with Addison’s disease, which is autoimmune failure (destruction) of the adrenal cortex. It is fatal if not treated, but reasonably easy to manage with multiple daily doses of hydrocortisone. I had to learn how to really pay attention to what I was feeling physically, so I could adjust my daily doses appropriately, but fortunately I had an excellent, supportive doctor, and I was a quick learner. Then 7 years later, I developed autoimmune hypothyroidism. The combination of Addison’s and hypothyroidism is called Schmidt syndrome. Again, fairly easily managed with replacement hormones. Turns out, Schmidt syndrome is, at least for me, part of an inherited genetic anomaly called Autoimmune Polyglandular Syndrome Type II (APS-II), which I apparently inherited from my mother (and which my sister passed on to at least one of her daughters).

A year later (age 38), I developed severe dizziness that lasted for about 6 months, and then I just got so horribly weak and sick that I was non-functional. My doctor, who had a reputation as a superb diagnostician, diagnosed this as cytomegalovirus (CMV). He said I had the highest titers of CMV he had ever seen. He also told me that I had evidence of a previous infection of EBV, which we figured was probably the mono from my high school days. I also had antibodies to HSV-1 and HSV-2 (even though I had never had any symptoms of either), and of course the usual Chicken Pox, which I had had as a child. A Straight Flush? A Royal Flush? Whatever! I was down for the count. This was in 1984, the year of the Incline Village CFS outbreak. My doctor was incredibly supportive, as was my husband. I was bedridden, weak, couldn’t tolerate sound or light, developed some really weird food allergies (e.g. hives the size of dinner plates after eating sun-dried tomatoes). At first I figured I would just wait it out – it had to end soon, right? I used my self-hypnosis as much as I could. But weeks stretched into months, and my progress was abysmally slow. Two inches forward, and one inch back.

After about 6 months, I ventured outside one day, walking slowly two blocks down to the mailbox and back. That wiped me out for the next 4 days. So I figured I had to back off and start slower than that: a half-block, down to the corner, and back. A day or two of rest. Then another slow trek down to the corner. Another day or two of rest. Gradually I improved. At some point, my doctor asked if I wanted to try an experimental infusion that might help. I jumped at the chance. He could not disclose the experimental drug, but he could tell me that the infusion also had some other things, such as 15 grams of Vitamin C. I don’t remember those days very clearly – I think I got 6 or 8 treatments. I do remember lying on the treatment table, the infusion dripping into my vein, as I listened to music albums on my little tape player: Dave Brubeck Take Five, and Miles Davis Someday My Prince Will Come. And after each infusion, for 3 or 4 days, I would feel significantly better, and then the improvement would fade away. I never did find out what the treatment was, but looking back, if I had to guess, I would say it was most likely Ampligen.

After the treatments ended, I still continued my self-hypnosis routine, and I added in large daily doses of Vitamin C. Trader Joe’s (at some point) started carrying time-release 1,000 mg tablets, and I still take a minimum of two of those a day. I became more focused on eating a healthy diet (especially way less sugar), and I continued to push the boundary on my exercise tolerance – very slowly, very gently. After a few more months, I was able to return to work part-time, and after a couple of years, I was able to do full-time again, although I did as much as possible to keep the stress level down. I revived my yoga practice, and found it to be simultaneously soothing and energizing. Eventually I was even able to scuba dive again. I definitely couldn’t keep up with my peers on that, but still, I was able to get back in the water. I joked that diving was the perfect sport for someone like me: the only skill it required was the ability to fall overboard and sink.

Throughout all of this, I was very lucky to have the full support of my steady-as-a-rock, loving husband, and of my caring, respectful employer and colleagues. I’m not sure I would have been able to make this journey without them! I didn’t know whether I would ever fully recover, so I stopped thinking about that. I just kept focused on today, and then today, and then today, one day at a time. If something seemed to help, even in a small way, I did it (or ate it, or thought it, or whatever). The first acupuncturist I went to was moderately helpful (he was an experienced Chinese practitioner). The second one I tried, some years later, made me feel significantly worse. I stopped pursuing that option.

Somewhere along the line I read a book titled Powers of Mind by Adam Smith (a pseudonym for George Goodman) which further reinforced my impression that there is no separation between body and mind (“mind” is what “body” does), and that our minds are capable of much more than we give them credit for.

Having experienced some pretty severe depression during the worst of my illness (which my doctor treated with an at-that-time new antidepressant Desyrel, generic trazodone), after I had become reasonably functional, I served as a volunteer for the LA County suicide prevention hotline, fielding calls from depressed, suicidal people. Sounds horribly stressful and depressing, right? But no – I found that the process of handling those calls apparently was stimulating my own immune system, or my will to live, or something like that. In trying to help these other desperate people, I was somehow triggering something positive and healing in myself. Another revelation.

We moved to San Diego and I found another excellent mainstream endocrinologist who believed that CFS was real and was very supportive, but of course there were no treatments he could offer me. (He did, however, add DHEA to my regimen for controlling my Addison’s disease – and that was a definite improvement.) I saw some alternative practitioners, who also had very little to offer. I joined a small support group of about 6 other women who had CFS, but after several meetings with them, I got the feeling that if I stayed in the group, I certainly would never recover, so I stopped going. The problem was that they were all simply accepting their illness and not looking for anything that might help them. Definitely not my approach!

It's important to mention two of the things that have sustained and motivated me through the years. First of all, the ocean. Being able to experience first-hand, in-depth, the enormous exotic universe that hides beneath the surface was always an incredible high for me. That was my strongest motivation: to become healthy enough to continue doing that. And I have often wondered whether those periodic doses of what was essentially hyperbaric oxygen therapy had a direct physical/medical benefit for me.

Secondly, music. I always enjoyed music, of all kinds. And then my husband introduced me to opera, and another full and beautiful universe opened to me. Puccini and Mozart, in particular, wrote melodies so achingly beautiful that they can rip your heart out – and then hand it back to you, healed and whole.

Life continued. I have never felt normal and healthy but was functional enough to continue my career (which had transmogrified into cybersecurity engineering), my marriage (we’ll be celebrating 50 years this year), and diving (40+ years – until the age of 68). I have always had to pace myself, and skip some things, so I could do others. Physical and social triage.

The 4 or 5 years leading into menopause were … interesting. I suspect the roller-coaster aspects were for me exaggerated because of my non-functioning adrenal cortex, but my doctor put me on bio-similar estrogen and progesterone, and that smoothed things out quite a bit. I also added Omega 3s to my diet and transitioned from a low-fat to more of a low-carb diet, avoiding wheat especially, because I discovered that having a plate of pasta would turn me into a freaking emotional basket case for days, so I concluded that I was somehow gluten-sensitive. I have, however, never tested positive for Celiac, thank goodness! The change in diet felt good, so I stuck with it. (Very important book: Fats That Heal, Fats That Kill by Udo Erasmus)

Two years later (age 52), I had my first severe adrenal crisis – brought on by a huge amount of stress at work. It was quite frightening, and brought me up short. After spending a couple of days in the hospital I realized I had to learn better stress management. I had been on the “fast track” in my career, and I had to walk away from that. I accepted the fact that I was never going to become Upper Management (let alone Vice President) – I stepped down from my Middle Management position to become again a lowly techie. After the crisis, I was on full disability for 6 months, and then transitioned to part-time work, on partial disability. After a year or so (I don’t remember the timing, exactly), Unum (the disability insurer) sent me a letter declaring that I was no longer disabled, and they stopped paying me. I took them to court, and won. They appealed the verdict, and I won again. They had to pay me all the back payments, plus all my legal fees. (The whole process took several years to play out.)

Three years after that first adrenal crisis, I was diagnosed with Sjogren’s syndrome (age 55). I started joking that my hobby was ‘collecting autoimmune diseases’. The Plaquenil that I was given for the Sjogren’s made my symptoms MUCH worse, caused permanent tinnitus, and gave me stomach ulcers. The treatment for the stomach ulcers included medication that apparently interfered with absorption of my hydrocortisone, so for 6 months I was barely functional again, until the ulcers healed.

Now I really had a challenge: whenever my fatigue and aches and pains and brain fog would get worse (which of course they did, periodically and capriciously) I had to figure out whether it was being triggered/caused by the Addison’s disease, or the hypothyroidism, or the Sjogren’s, or the CFS. Not possible! I did the best I could, adjusting diet and medications to see what helped and what didn’t. One thing I learned the hard way was to never make more than one change at a time, and give that change 6 to 8 weeks before coming to any conclusions on it. (If I tried to change more than one thing at a time, and something went wrong, I had no way of knowing which of the changes had caused the problem.) I also learned that, with both medications and supplements, I had to start slowly, usually on one-quarter of the “normal” dose, and taper up/down very slowly.

It was about this time that I enlisted the aid of a professional hypnotherapist. I explained to her that what I wanted was to be able to modulate my immune system. I needed the ability both to calm my immune system (to counteract the autoimmunity problems), and to strengthen my immune system (to deal with infectious diseases). She created for me a hypnosis recording that I could listen to whenever I needed. One of the features of the recording was a post-hypnotic suggestion that anytime I felt like I was getting some symptom that I didn’t like, I could just say to myself “No, that is unacceptable – go away” and it would go away. The suggestion wasn’t fool-proof – but I would say it mostly works, most of the time I try it. Another great aspect of having a hypnosis recording is that I can listen to it using headphones, which places the voice of the hypnotist inside my head instead of out there in the room. Amazing what a difference that makes!

I got through another Adrenal crisis (age 57), this time triggered simply by severe pain from a muscle spasm in my back. And then at 64, I was hospitalized with a serious infection from a dog bite. The IV antibiotics caused a C. difficile infection, so back to the hospital to be treated for that. Increased cortisone for both situations.

A year later (age 65), we retired and moved from Southern California to the Central Coast (of California). A beautiful area! A few months after we moved, I was diagnosed with breast cancer. Lumpectomy, followed by 6 months of chemo (brutal), and then 2 months of radiation (not as bad as chemo, but not exactly a walk in the park either). At least I was no longer working, so I was less stressed out about being TIRED and having BRAIN FOG so often. As part of fighting the cancer, I reconnected with the professional hypnotherapist I had used years before, and had her create new recordings for me, varying the specific wording and emphasis for each of the stages I was going through: a recording for dealing with the surgery, and then another one for dealing with chemo, a third one for dealing with radiation, and finally a fourth one for post-treatment continuation. I used them multiple times each week as I went through my treatment. The other thing I did, at the suggestion of a good friend, was to create a musical playlist (which my friend named my “F*ck cancer playlist”). The best song on that list was her suggestion also: Tubthumping, by Chumbawamba. It kicks ass, and remains one of my all-time favorite songs.

It took me about 2 years to feel as though I had fully (well, as fully as possible) recovered from the cancer, and since then (i.e., for the past ten years) I have felt reasonably functional, in between flare-ups of fatigue and inflammation. I have had three more adrenal crises (one triggered by food poisoning, one triggered by flu, and the most recent one triggered by covid).

I had a severe reaction to the first Shingrix vaccine (5 days totally incapacitated, in bed), so I never went back for the second dose. My reaction to the first Moderna covid vaccine was “all-of-the-above” symptoms (including a herpes outbreak) and lasted 3-4 weeks. Reactions to the 2nd (Pfizer) and 3rd (Pfizer) shots were not as bad (but both did trigger mild shingles outbreaks), but still much worse than anyone else I knew. I recently had the new Novavax shot, with no side effects at all, so I am very relieved to have that option!

About 4 years ago I made another significant change in my diet that has been very helpful. I mentioned earlier that I had concluded I was gluten-sensitive, so I had been avoiding wheat for roughly 20 years. But then I read an article claiming that it wasn’t the gluten – it was the glyphosate (Roundup). Turns out that at least some wheat growers spray their entire crop with glyphosate to “desiccate” it before harvesting – this forces the seed, and makes the crop easier to harvest. I did some additional reading, found some good research papers, and decided to convert to an all-organic (well, 95% anyhow) diet. Turns out that I have no problem eating organic wheat. And I think overall, eating a mostly organic diet has had a positive effect on helping to moderate my CFS symptoms. I’ve found that I still feel better when I minimize my consumption of grains, so I’ve continued along that path.

I continue to use my most recent hypnosis recording on an as-needed basis. I should note that it includes a change from modulating my immune system to modulating my energy level: I need to both sooth/calm/heal (on one hand) and energize/brighten/strengthen myself, so the recording includes imagery for both goals.

My bout with covid was a year ago (age 76). I was able to take Paxlovid, so the covid itself wasn’t really horrible – like a bad flu. I had to be hospitalized though, in order to treat the accompanying adrenal crisis (that always requires hospitalization, for IV cortisone and monitoring). My post-covid problems included an initial 3 months of extremely high blood pressure, caused by overproduction of epinephrine (practically unheard of for someone with Addison’s disease), followed by really severe muscle and nerve inflammation (mostly lower back, left hip, left shoulder) that lasted for an additional 8-9 months.

I continue to have bouts of abnormal fatigue accompanied by muscle aches/pains/inflammation, mouth sores, depression, sleep disturbances, brain fog, etc. which occur mostly without warning, with no apparent triggers. When I can’t function, I don’t. I just have to wait it out. Eventually it goes away. Sometimes in 3 days, sometimes 3 weeks, sometimes 3 (or more) months.

In addition to the various supplements and dietary regimens I have already mentioned, I have also had some success with monolaurin (at the suggestion of my naturopath), a supposedly anti-viral supplement that I took for several years, and which seemed to reduce the frequency and severity of my flareups.

I was thrilled to discover the Health Rising website a few years ago, and I read it regularly (I can’t thank you enough, Cort, for this amazing resource!), looking for both a better understanding of my CFS, and for suggestions on other supplements (or whatever) that might be helpful. As a result of a Health Rising article, I tried NADH and ubiquinol, which I am currently taking, that seem to help reduce the fatigue and heart-pounding. I also tried LDN briefly, but it made me feel much, much worse, and it took me about 6 months to recover from it.

I am encouraged that finally, after all those years the medical-pharmaceutical complex spent gas-lighting us, they are mostly beginning to acknowledge the reality of this disease. The research that Cort tracks and reports on here on Health Rising is very encouraging – finally the research is being done!

Additionally, I was able to attend (virtual, online) the recent NIH NIAID symposium on ME/CFS, and saw for myself that serious, quality research is being done – even at NIH! One thing that particularly struck me was that several of the studies demonstrated significant male-female differences. I have long been aware that the incidence of ME/CFS is higher among women – but the research is clearly demonstrating that the disease also may manifest differently in women.

In his summary remarks at the end of the symposium, Tony Komaroff argued for a systems view of ME/CFS (and I see Dan Neuffer’s approach, among others, as reflecting a similar view), and that makes a great deal of sense to me. The human body is an immensely complex system-of-systems which, for ‘normal’ people is largely self-correcting and self-balancing. For those of us with ME/CFS, various aspects (systems, sub-systems) get out of whack and stay imbalanced for extended periods of time. If I had to guess, I’d hypothesize that we have some genetic anomaly (or anomalies) that makes the re-balancing difficult under certain environmental conditions (such as certain viral infections).

Komaroff envisions that our bodies have some “single final pathway” that can be identified and targeted with drugs or other treatments. My hunch is that it won’t be that simple. I doubt that there will be a single “magic bullet” that works, because there may not be a “single final pathway.” Even if there is, it hasn’t been found yet. Thus, for most of us, I think we need to adopt a continuous, health-focused effort (Dan Neuffer’s work is definitely that) – a sort of persistent game of gentle whack-a-mole, always pushing back on our symptoms, retaining things (both physical and psychological) that work, discarding things that don’t work.

Like Gen. Oliver P. Smith, we need to refuse to retreat – we must instead advance in a different direction, and continue to do so. We may not experience a cure, but we can improve, and find ways to experience a better quality of life.



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