Hope And Healing For Robin

Both this page and her FB page have updates on Robin & her health. Her FB page is Robin Thompson Medical Benefit.

Friends started her GoFundMe, “Hope and Healing for Robin” https://www.gofundme.com/hope-and-healing-for-robin

This Benefit helps with her ongoing and increasing medical expenses, surgery copays, treatments and testing, appointments, holistic supplements and travel expenses.

Including:

$20,000 Copay for Upcoming Surgery for Superior Canal Dehiscence at Mass General, Boston.

Possible Brainstem Surgery to treat/remove 3.5 Cm brain lesion.

$20,000 Copay for Jaw Disc Replacement Surgery, then 1 Yr. Orthodontic Braces, 3 MRIs.

$30,000 Copay for Previous 2 Brainstem Surgeries and Thoracic Outlet Surgery.

Lyme Disease - Integrative Dr. Fees, Testing, Supplements - all of which are cash pay and $$$.

$15,000 to Naturally Chelate/Detox Heavy Metal Poisoning of Mercury & Gadolinium (Contrast MRI dye.) Actor Chuck Norris' wife almost died after 3 MRIs. Robin's had 25. The Norris' spent 2 yrs. & $2 million for Gina's healing.  

$13,000 for Biologic/Holistic Removal of Dental Mercury Fillings & Heavy Metals. 

$30,000 for Remediations of Toxic Black Mold In House. House Gutted to Stud Walls and Baseboards.

Day-to-Day In-Home Care. Caregivers Charge Minimum $20 - $35 per hour.

HOW YOU MAY HELP

Make a donation of any amount through GoFundMe at

https://www.gofundme.com/hope-and-healing-for-robin

Donate by Check, payable to:

Joyce Thompson

17298 Lake Knolls Road

Pekin, IL 61554

Please Share this site through Facebook and Email with your friends.

LIKE her FB page https://www.facebook.com/robinthompsonmedicalbenefit/

Donate Airline and/or Hotel miles she can use for her upcoming SCD surgery in Boston.

Above all, Pray for healing, strength, guidance for Robin, her parents, Bob and Joyce.

Philippians 4:6 Do not fret or have any anxiety about anything, but in every circumstance and in everything, by prayer and petition (definite requests), with thanksgiving, continue to make your wants known to God.

LIFE AS WE KNOW IT

Photos are from before Robin's illness. So yes, she looks fit and healthy; that's how she wants people to think of her.

Robin still suffers disabling, painful neurological symptoms that affect her 24/7. Many years of life have passed her by. Her days of lecturing and travel are on hold. She was in the midst of writing her next book; that’s on hold too.

Daily things people take for granted - reading, being online, phone calls, listening to a radio, watching TV, driving, going to a restaurant or church, even sleeping not possible. Plagued by constant left sided facial/head nerve pain; hears constant, invasive, electrical headnoise. Lyme disease symptoms.

Yet, Robin continues to fight the good fight knowing there is healing and relief.

She gets great comfort from her sweet cats Catta, Augustus, Luxor, & Cassia. She's lost YumYum, KoKo, Cassius, Leonaidis Sr., Leonaidis Jr., Caesar, and her beloved Brutus - all rescue kitties who never knew her when she was well.

DEFINITIONS TO HELP YOU UNDERSTAND ROBIN'S SITUATION.

Superior Canal Dehiscence. Skull Based Surgery Needed/Only Cure.

Extreme sensitivity to noise caused by hole in bone of superior canal of inner ear. Everyday noises are overwhelming: ringing phone, music, people talking, plastic bag rattling, even her own voice can sound like being in a battle zone. Many other disabling symptoms are affiliated with SCD.

Trigeminal Neuralgia(TN). 12/2022 Brain MRI shows New Nerve Compression.

Robin already had 2 TN brainstem surgeries in Detroit 3 years apart. Even after surgery, new compressions can occur again as it did for Robin.

Trigeminal Neuralgia is universally agreed to be 'The Most Excruciatingly Painful Condition Known to Medical Practice.” Terrible facial pain caused by an artery compressing the 5th (or any of the 12 facial cranial nerves), interfering with about every function of daily life.

TN often goes undiagnosed or misdiagnosed for years. Was 5 years for Robin.

Lyme Disease. Her 2022 Testing shows Chronic Neuro Lyme. Difficult to eradicate since combined with her genetic defect for processing toxins; house had hidden Black Mold/Stachybotrus, in defective basement dewatering system.

Lyme is called “The Great Imitator” because its symptoms mimic many other diseases. Can affect every part of the body, including brain, nervous system, eyes, muscles, joints, and heart.

It can be fatal.

Dr. Sara Jernigan, founder of Jernigan Nutraceuticals: “I have been in this business for over 20 years now. I have seen people get healed miraculously. I have seen people get better, but sadly, I have seen people die.”

Even after years of antibiotics Robin had no relief and grew worse.

Gadolinium Toxicity.

Gadolinium is a toxic metal used as a contrast dye during an MRI. It’s injected via IV and allows the MRI scanner to better highlight body structures. However, Gad. causes toxicity that can be severe and disabling. The FDA put a Black Box warning on it in 2007. No one ever told us. Robin has had over 20 MRIs. The metal deposits and stays in the brain and organs.

Central Sensitization. Extreme, even disabling sensitivity to noise, light, movement, touch. CS can be debilitating making people avoid any social settings or noise of any kind.

Her doctors say to avoid stress as it worsens her symptoms; that's very difficult due to her symptoms and medical expenses.

HOW IT ALL BEGAN

Robin had two of many Brain MRIs with Gadolinium Contrast Dye. Each time she was very sick for weeks with migraines, neck and back pain, blurred vision. 

Robin was trying to maintain her business and continue lecturing. She was in the midst of writing her second etiquette book. She tended to her beloved 7 rescue cats. Was active in her church, Trinity Lutheran. She loved to travel, but it was becoming difficult.

A REALLY BAD DAY. She had a routine outpatient surgery and came home feeling well, but that night symptoms hit full force. Thunderclap headache, burning facial pain. Her eyes wouldn't converge. Extreme sensitivity to noise. Deafening loud, electrical noise pulsing in her head. Nerve pain in left side of body. Doctors had no answers and would not network or try to help.

As we would discover years later from our own research, this was the tipping point at which all the problems she had conjured into a perfect storm. We would not receive any helpful treatment or a diagnosis for 5 painful, long years. And that would be just the beginning.

THE LONG QUEST FOR A DIAGNOSIS

For 5 years, Robin and her parents traveled to dozens of major medical centers seeing specialists in in neurology, neurosurgery, etc. She saw over 70 doctors, internists, and surgeons. She was scanned from head to toe and had every medical test imaginable.

Being a big believer in holistic medicine, she tried Prolotherapy for $12,000, Neurofeedback for $2000, one month of living in St. Louis to have Cranial Magnetic Therapy at Barnes Hosp. for $3,000, ongoing Chiropractic, Cranial Sacral, Biofeedback, Acupuncture, Reflexology. Had Neuro-Psych testing which she passed with flying colors.

No doctor could offer a treatable diagnosis and she was told many times she did not have Trigeminal Neuralgia though we knew from research that she did. That she had to stop her beloved lecturing was devastating. Yet she knew she was not imagining these horrid symptoms and she never gave up.

DIAGNOSES & SURGERIES

First Microvascular Decompression Surgery for Trigeminal Neuralgia. God led us to a Neurosurgeon in Detroit who said Robin did indeed have TN. Her April birthday was on Easter so we celebrated both while she was in the hospital. The pain was greatly relieved in her face; however, it did not improve vision, tinnitus, and left sided neuropathy.

Diagnosed - Chronic Neurological Lyme Disease. Spent the next 3 years paying out of pocket to see out of state doctors and taking too many anti-biotics. No relief. Grew worse.

Currently on Stephen Buhner, Master Herbalist, Lyme Protocol.

Thoracic Outlet Syndrome Surgery in St. Louis. A very invasive procedure to decompress trapped nerves in neck and brachial plexus. No relief. She regrets having this surgery.

NO RECOVERY. MORE SURGERY

Obviously, something else was wrong as Robin was not bouncing back from either surgery; facial pain was back and symptoms were worsening. Had years of expensive, grueling scans, testing, labs, procedures that turned up little.

Second Microvascular Decompression Surgery in Detroit. She had it out of desperation. Surgeon worked on five of her Cranial Nerves. Twice as much work as he did in first MVD. He told us to be positive and leave it to God.

Nothing was relieved and she actually was worse than before.

Superior Canal Dehiscence Diagnosis. Surgery needed. However, Covid is really delaying our travel and appt. plans.

Three US hospitals with Top Docs for SCD are:

1. UCLA: Got our diagnosis there.

2. Johns Hopkins, Baltimore.

3. Mass. General, Boston.

Yet, we know SCD is only part of the puzzle and not cause of all her symptoms.

Black Mold - Stachybotrus. A neurotoxin. Causes so many neurological, autoimmune issues. Wasted 3 years on expensive botched remediations that didn’t find the mold source. Finally, next remediator discovered Black Mold. If we hadn’t found the source, we would have continued breathing these deadly spores.

Furnished basement was gutted to concrete floors and stud walls. They chopped up Robin’s piano. Mycotoxins stay in items more than one inch deep so we got rid of furniture, pillows, mattresses. They stick to paper, so out went pictures, paintings, books, memorabilia.

People with genetic issues, such as Robin, often cannot live in a remediated home due to mycotoxins. They’re invisible and attach to everything. Since they’re airborne, you constantly breathe them. 

Some 'genetic’ people have to move even after a house is remediated, but finding a clean place to live is a huge challenge and costs money. Plus, you can take NO possessions from your old home due to mycotoxins.

Basement Dewatering company installed new system. Leaked NEXT DAY. 17 pages of emails and legal threats before they finally fixed it 6 months later.

Water got in the basement wood framing. Aspergillus and Penicllium molds grew back. More remediation.

HEAVY METALS. Testing showed Robin has Heavy Metal Toxicity from both Mercury and Gadolinium. These metals impair the immune system.

Robin contacted Dr. Karl Volz, Swiss Bio Health Clinic - world leader in this field. Told her she couldn’t chelate to remove toxic metals if she still had mercury fillings.

Spent $13,000 on 8 months of trips to Chicago for biologic oral surgery and dental work to remove mercury, root canals, crown metals. Her oral surgeon trained under Dr. Volz. Follows his protocol. We could have gone to Switzerland and had Dr. Volz do it himself in one week for the same price.

Robin is now on safe chelation treatment to cleanse her body of metal toxicity damage. It’s a slow process that will take three years.

INTEGRATIVE MEDICINE. Saw a good Dr. In Indianapolis but two office visits and labs cost $4,000. These doctors are CASH ONLY. $975 for an office visit. Labs and treatments run into the thousands.

Found a local Naturopath but this Dr. insisted on $2,000 of DNA testing upfront, cash. Waited 3 months for results and then were forced to have 3 one-hour monthly appts. with doctor reviewing 111 pages of medical DNA info, over our heads. We pleaded for summary of results instead of having to listen to 3 hours of medical info we didn't understand. And wasting 3 months. Dr. wouldn't do it. Then we waited another month to discuss treatment options which were unimpressive. Dr. was not knowledgeable about many things.

2021. Next Integrative Dr. had her on 4 antibiotics for Lyme. Mandatory Labs were NOT ordered though we spent 1 month asking office staff, leaving messages for labs. Robin ended up in ER. They admitted her to hospital due to oxygen tanking dangerously low. Could have been avoided.

Primary Care doctor won't treat Lyme. Trying to work with St. Louis Integrative Doctor.

2022 Brain MRI shows yet another trigeminal nerve compression by an artery causing face pain to flare again. Her Detroit neurosurgeon just had a liver transplant due to his contracting hepatitis, probably from performing surgery. So he can't advise her.

Still needs the Superior Canal Dehiscence surgery, but that will come when money is available and Lyme is better under control.

We know that God holds us in His hand. He is good and has always provided for all our needs.

Isaiah 58:8 Then shall the light break forth as the morning, and thine health shall spring forth speedily.