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
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
- 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
- I reduced my work hours
- I left my job or retired early
- I took on jobs with less responsibilities than I otherwise would have
- 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.
Thanks so much for telling your story Allison – and what a story! Fibromyalgia and IBS symptoms going way back, then gynecological issues (so common in these diseases), and lots of pathogen exposures – and all your travels – UK, Canada, Norway, Uganda and now the US. I, too, have found getting off wheat and recently stretching to be very helpful with FM pain. Thanks again for telling your story and good luck with the PEMF mat.
Hi Cort, thank you for your comments.
I wrote a long reply but it did not submit so I will be briefer.
I have used the PEMF for 4 months. At first it caused a lot of herxheimer, which was ongoing. Gradually I started noticing differences. My constipation ended. My pain levels retreated. My muscles that felt like hard plates in shoulders and buttocks softened. I was able to stand a little longer, but then my left knee popped after an infinitesimal side twist. I couldn’t bear weight. But after 5 weeks treatment for pain on both knees, I can bear weight again. I can take off my knee sleeves for a few minutes a day to have a shower. I can walk inside without a cane, and outside with a cane.
I love the far infrared. It is very warming, and it clears my brain fog and gives me energy.
So I have hope. My nephew is getting married in Australia in a few months. My prayer is to be able to fly to his wedding. As we all do, I want my life back.
Hi Cort,
Thank you so much for all your hard work on our behalf. Thank you for giving us this forum.
I have recently done two treatments which are game changers. I was led to the first by a book you recommended, CFS Unravelled, by Dan Neuffer. His premise is that overstimulation of the autonomic nervous system is the perpetuating factor of CFS. Based on that idea I had a Cereset treatment session, which is neuro biofeedback. The system transfers your brainwaves to musical sounds that your brain recognizes as incorrect and it resets itself. At the beginning my fight or flight was 4 out of 100 and after 5 sessions it came up to 62. I felt much more relaxed and less anxious, and it cleared a lot of my brain fog.
The second treatment is PEMF. I was introduced to it by my fibromyalgia specialist in 2014. I had 5 Ondamed treatments which must be given by a trained therapist. Treatments lasted an hour and took away all my pain for 2 weeks. I stopped them because the therapist stopped traveling to my city.
A year ago I was introduced to a home device which operates on 0.5 to 30 hz, the same as the earth’s magnetic field and the human body”s own electromagnetic field. ( Didn’t God design us well?)
After reading Bryant Myers book PEMF, and researching for many months, I recently purchased an iMRS Prime system from Swiss Bionics. I bought a hybrid system which delivers far infrared technology and can also do neuro biofeedback, if you purchase the headset attachment. I didn’t, but am reconsidering that. It also has an oximeter which can do auto biofeedback so that the device delivers optimum PEMF for your body. If you get the professional system it has extra software that will enable you to do research and also connect with other researchers. The software is logical and easy to use
It comes with 3 delivery devices: a body length mat, which I put on a massage table so I can access it at any time, a 2ft x 1 1/4 foot pad, and a pair of hand sized hexagonal spots, connected by an elastic strap. The mat delivers undulating saw toothed waves that mimic the earth’s electromagnetic field. Put on hybrid mode it delivers also far infrared, which is heat. The pad and the spot are for pain treatments, and deliver deep squared waves, which stir up the cells.
I treat myself with the mat twice a day, once in the daytime with far infrared, and once at night without far infrared. I treat myself once or twice a day for pain. At first I used the pad to my lower back and buttocks, my biggest pain area. Later I started using the spots on my knees. More on that later.
The effects I’ve noticed have been varied. First, I got a massive herxheimer, or die-off reaction. I was warned about this and started treatments with low intensity and time. it lasted a good month. I was flattened. Then I gradually noticed an increase in energy, such that I was able to stand longer (my POTS keeps me in a chair for most of the day). But then, about 5-6 weeks ago, I did a tiny sideways movement of my left knee, and something on the top of it popped, so that I could not bear weight. I had to brace it, use a cane. and started treatments with the spots to both knees – the additional pressure of use was causing pain and dysfunction in my right knee too. (I’ve seen an orthopedist for these bone on bone knees and we agreed I have too many issues to do surgery).
I joined the Association of PEMF Professionals, so that I could access their training videos. The knee video said to do 15 minute sessions 6 days a week. You pick the intensity that feels best to your body, not going over 150. It’s like sound and taste preference. The video said that the PEMF stimulates stem cell growth in the joint. The stem cells then differentiate into what is needed, and attach themselves to the appropriate spot. It said treatment should last 6 weeks.
After 5 weeks I can now walk in the house without the cane. I can take the knee sleeves off for half an hour a day to shower. I still need the cane to walk outside. I stayed at home for 3 weeks and can now leave the house.
The pain treatments to my abdomen and lower back have ended my chronic constipation. They have also greatly reduced pain levels around my abdomen. My ribcage and gallbladder area (I have gallstones) used to be 5-6 plus pain to palpate. That has reduced to 2-3 plus pain.
Mat treatments reduce the blood clotting that exposure to high emfs causes. 5 G wifi emits 30 t0 300 gigaherz. This causes your blood cells to clump together. (I can’t help but wonder if that is why I have microvascular angina and POTS) They get both blood and lymph flowing again.
Mat treatments with FIR give me mental energy and reduce brain fog. I don’t know which is doing what else, but my plate like muscles have softened considerably, and I can now palpate individual trigger points again. So I’m wondering where I’ll be in a year, or two years?
I would be interested to know if anyone out there is interested in my PEMF data. If so, I will consider upgrading my device so that I can participate in any ongoing research. I really would like to have a normal life again, and leave my house and go for walks. I miss walking.
Thanks for sharing your story. I am wondering what PEMF is?
Hi Jillian, PEMF is Pulsed Electronic Magnetic Field Therapy. It is based on the premise that the earth has a magnetic field that pulses north to south, at a range of 0-30 hz. Our bodies are also electro-magnetic fields which range between 0 and 30 hz. You can see this by the fact that our heart’s electric waves form an electrocardiogram, or ECG, and our brain’s electric waves form an electroencephalogram, or EEG, both of which are diagnostic tools. According to Bryant Meyer’s book PEMF, The Fifth Element of Health. which is available on Amazon, our Earth’s magnetic field is in a low state and has been decreasing for years, perhaps getting ready to do a polar switch. Added to that, our modern technology is cutting us off from it. We encase ourselves in steel and concrete buildings, and steel vehicles with rubber wheels, all of which block the earth’s magnetic field. It’s like we are putting ourselves into faraday cages. Adding to that, we don’t walk any more, and when we do, we walk on concreted sidewalks in rubber soled shoes. Therefore, we are blocking ourselves from the earth’s magnetic field that we need to thrive. You can mitigate the damage by going outside and taking your shoes off. Weed your garden. Sleep in a tent, walk down a beach, go out in a wooden boat. Or you can get a PEMF device, which gives you the equivalence of the earth’s magnetic field but on a more intense level.
Adding insult to injury, we have invented electronic things that run on higher hz cycles than our bodies like. Electric lights, TV’s, microwaves, computers all run at high herz cycles. Wifi is the worst. 5G wifi runs at more than 300,000 hz! It is damaging to our bodies, causing our blood cells to clump together so that they cannot go through the capillaries.
I recommend you research it heavily if you are considering purchasing a device. They are expensive pieces of equipment and you need to understand how they work. I recommend starting with Bryant Meyer’s book. I hope this is helpful. Feel free to ask me more questions.
Thanks for taking the time to explain this. I shall seek out the book. Best wishes.
You are welcome. Best wishes to you too.