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Basic Stuff

  • Name: Alison Wiltbank
  • Country: United States
  • State: Florida
  • City: Ocala
  • Gender: Female
  • Age: 74
  • Education: Jr. College
  • Primary Illness: ME/CFS
  • Diagnosis:
    • Chronic Fatigue Syndrome (ME/CFS)
    • Fibromyalgia (FM)
    • Postural Orthostatic Tachcycardia Syndrome (POTS)
    • Irritable bowel syndrome
    • Mast Cell Activation Syndrome (MCAS)
    • OSA, Diabetes Type II, CAD
  • Year Illness Began: 1991

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: 30
(Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform desk work 2-3 hours a day, but requires rest periods.)

Work Interrupted

  • Former Occupation: Part time RN
  • Job Responsibilities at Former Occupation:

    ICU flexipool 2 days a week
    Home schooling my daughter

  • Years of Work Lost: 17
  • Current Work Status: Retired

Income Interrupted

  • Year Retired: 2013
  • Yearly Income Before Becoming Ill:

    $15,000

  • Yearly Income When You Retired:

    $10,000

  • Minimum Annual Income Loss at Retirement:  

    $16,736

  • Total Projected Economic Losses For Years Not Worked:

    $382,347

Other Interruptions

Certified Disabled: No

Finances:
  • A member of my family stopped or reduced their time at work to become a caregiver
  • My parents or other family members have provided financial support
  • This illness has severely impacted my ability to financially prepare for retirement
Work:
  • I reduced my work hours
  • I left my job or retired early
  • I took on jobs with less responsibilities than I otherwise would have
Relationships:
  • I believe this illness contributed significantly to a divorce or loss of an important relationship

Most Impactful Loss

I was forced to leave my best job ever, working as the nurse and the landscape designer at African Bible University in Kampala Uganda. That forced my husband to leave his best job ever, teaching at the same University.

My Story

I have lived a long unhealthy life so I’m going to condense into Timelines for travel, disease progression and treatments. If there is room at the end I will give some thoughts.
Timeline for moves
1949 born, Coventry, UK
1958 January Ont. Canada
1958 August PQ, Canada
1961 PA
1964 VA
1966 Graduated High School.
1966 to Oslo Norway, aupaire
1967 Nurses aide
1968 entered Nursing School
1971 graduated Vor Frue Sykepleieskole
1972 became a Christian
1972 VA, USA
1973Nursing
1982 married
1982 Norfolk VA
1984 daughter born
1991 bought fixer upper house, Norfolk VA
2005 Kampala Uganda
2012 MO USA
2017 FL

Disease and treatment timeline:
1949 whooping cough
1954 T&A
1967 tapeworm - antihelmetic
1968 shoulder pains in muscles.
1971 IBS symptoms
1982 IBS diagnosis and treatment belladonna
1984 gave birth to healthy daughter
Taking Ibuprofen around the clock for muscle pain
1985 TMJ, bite guard
Allergies: oral allergy syndrome with hives allergic to Peach, chamomile, grass and birch
1990 acute back pain after rolling out wedding cookies for 4 hours. Chinese massage x 3 weeks, started exercise and stretch regimen.
1991 bronchitis x2 . Augmentin x2
Increased muscle pains in shoulders, neck, lower back
Physical therapy Wharton’s stretch method
GERD
daily walk with dog x2
More allergies: kiwi brazil nuts, macadamia nuts
1992 started having very heavy menses, passing huge clots
1994 hgb 8.3. Hysterectomy for uterine fibroids
1996 car accident. Massive muscle pain and nerve pinch down left arm
1996 diagnosis fibromyalgia by a physiatrist after reading Myofascial Pain and Dysfunction
Got ergonomic helps: memory foam mattress topper, ergonomic all way adjustable office chair. Primrose oil, malic acid
Chiropractic course helped about 4-5 months
1997 osteopathic manipulation x8. Loosened me way up. I’ve never been so tight since, until last 5 years
2003 sleep apnea cpap
2005 Wilson’s thyroid syndrome - treated with guaifenisin and T3 weaned up and then back down again.
Doxycycline as malaria prophylaxis
Slipped and fell on mud, severely pulled left knee. Cortisone shot to knee.
Giardia
2006 Candidiasis post doxycycline.
DC’d Doxycycline
Malaria. Antibiotics
2007 malaria , amoebas. Antibiotics
2008 Anti-yeast diet x 8 months
Started working with nutritionist Dr Dave Frahm. Magnesium malate, fish oil, sam e, other supplements for adrenals. Started muscle response testing. Started 80% raw, 20% cooked diet
Acute inflammation left knee. Cortisone
Heart attack, felt like an electric shock.No treatment. Diagnosed months later by ECG
2009malaria in US diagnosed and treated myself one day after arrival. 8 weeks in U S GERD increase from carrying all suitcases after my husband had abdominal surgery.
2010 malaria, Giardia, return to US for 8 months.
Sore throat and cough, was thrush, but misdiagnosed and treated with Augmentin. Fibromyalgia crisis and panic attacks. Very bad time in an apartment with black mold. Monthly trips to NC to see fibromyalgia specialist. Started IV nutritionals with Myers cocktail and IV glutathione.
Diagnosis from fibromyalgia specialist:
ME, diabetes type II, low T3
Switched up supplements. T3, metformin, Sam E, adrenal boosters
2011returned to Uganda
Malaria x2, g
2012 malaria, stent for 85% occluded LAD
2015 cardiac event, started on metoprolol
Ondamed PEMF x4. Each tx cleared all pain for 2 weeks
2018 Left ovarian cyst, oopherectomy
Negative cardiac cath. Why am I having chest pain? Microvascular angina- my own diagnosis. This doesn’t feel the same as the LAD angina, much more diffuse.
2019 POTS
Stool testing showed 2 parasites I’d never heard of ( I studied hard in Uganda)
Blood testing for allergies: seaweed, squash, coconut
2020Cortisone shots to both knees for bone on bone
Massive allergic reaction 3 days later with redness and swelling at injection sites and intense itching in both knees. Cancelled further injections.
After this I diagnosed myself with Mast cell syndrome and my doctor accepted the diagnosis. I started with what I had: Benadryl and Cetirizine low dose, one at night, one in the morning. Doctor accepted the diagnosis but deleted Benadryl and added Rx Montelukast in AM. Much better. This cleared a lot of my brain fog.
2021 Cataract surgery, February and March.
2022Depressed and anxious. Feeling pretty hopeless. Feeling very stuck. Vision getting blurry. POC. Not happy! PEMF x2 on a friend’s system. It helped pain x3 days
2023 I read CFS Unravelled by Dan Neuther, which was recommended by Cort. Based on Dan’s premise that the perpetuating factor of ME is over excitation of the ANS, I had a course of Cereset, or neuro biofeedback. It helped a lot to reduce anxiety and calm my mind. I started out with a fight or flight response of 4 and it raised to 62 out of a possible 100 after 5 treatments.
PEMF on friend’s system at a retreat. It healed an acute back strain in 4 days.
In June I started PEMF treatments after purchasing an iMRS Prime Hybrid system from Swiss Bionics. After 4 months It has largely healed a knee injury where I couldn’t bear weight. I am breathing a little better and have a little more mental and physical energy- enough to edit this bio.

In 2012 I learned about a nutritionist in St Louis who had cured herself of fibromyalgia in 2 years. When I called her, she gave me 5 minutes. She said I must heal my gut, but not how to do that. I’ve tried multiple diets, all of which have helped, none of which have healed. Eight months anti-yeast, one year gluten free vegan, 6 months GAPS. 5 day juice fast. Fibromyalgia is easy to manage once you figure out to get off wheat and sugar, and to stretch and exercise every day, manage electrolytes and eliminate your perpetuating factors. Read ch 4 of “Myofascial Pain and Dysfunction” by Travell and Simon for that information.
ME is another matter. Once it started intersecting with my heart, I’ve not been able to reverse it. Until I got PEMF 2 months ago. Now after massive herxheimer reaction in the beginning I am starting to see subtle improvements. For the first time I have hope.

As you can see I’ve had multiple parasites and a few bacterial or viral infections. I think that the antibiotics strip our gut flora, our diets are sterile and toxic, we are being bombarded with high hz electromagnetics our bodies weren’t designed for, and the net result is being sick. I think a cure is going to involve normalizing the gut flora. You could do that with live stool enemas, or dehydrated capsules. You could do it with fasting. I tried that - did a 5 day juice fast, and after the initial three day herxheimer reaction, I felt like a million dollars for 2 days. I cleaned my whole apartment in a day- something I hadn’t done in 20 years. But then I bruised all over. Turns out the blood thinners I was taking for my stent contraindicated a juice fast. I’m still taking those blood thinners or I’d have done a long juice fast 10 years ago.

Having come up in the western medical system, and then been a patient in it for 50 years, I believe we’ve gone off at a wrong tangent and we need to correct course. Step # 1 would be to give doctors a lot more training in nutrition. And step # 2 would be to step back from the pharmaceutical industry.
Lastly, I want to thank you, Cort for giving us this forum, and I want to thank God because I could not have survived this disease without him.



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