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Urgent Support Requested

To cjagielski on 08/04/2021
Dear Dr. Jagielski,

We are in urgent need of support for my Mom, Gayathri Ramprasad, who has been having acute spasms for the last 6 months (since January 2021). These are convulsions from the abdomen through the throat. The spasms continue for 12-16 hours a day and are extremely debilitating. They have worsened significantly in the last 8 weeks, now occurring all day every day.

Several doctors believe this may be a case of extreme supragastric belching, and we have been encouraged to reach out to you to learn if this is a symptom you work with? Below are some additional details of our case

Observations:
• Infections: Gayathri had shingles last September 2020 on the abdominal nerve pathway and acid reflux issues in November 2020 for which she started taking a proton pump inhibitor (omeprazole then pantoprazole) until July 19, 2021 (~ 8 months). She possibly had a Covid infection in February 2020 and reacted strongly, including worsened spasms, to both doses of the Pfizer vaccine in March & April 2021. She tested positive for Covid antibodies (could be due to previous infection and/or vaccine) and tested positive for Epstein-Barr reactivation in July 2021.

• Onset: The spasms first began after xanax & mirtazapine were tried in mid-January 2021 and have continued ever since, worsening significantly in the last 8 weeks in terms of frequency, intensity, and duration.

• Scans & Bloodwork: Pericarditis fluid in the heart as well as gastritis inflammation in the GI system were found in March 2021. In June high WBC, low RBC, and high B6 were found. C02 has been consistently low throughout.

• Medications: We have had 11 ER visits, 3 hospital stays and tried the 39 medications listed below which have not controlled the spasms. There has been continuous use of GABA-affecting medications from January onwards (benzodiazepines followed by gabapentin followed by ambien followed by baclofen). Baclofen was used April, May, & June, and tapered and stopped by July 4, 2021 as no benefit was observed. It was resumed on July 20, 2021, and after a week of using regularly (10mg 3x a day with no benefit) is being tapered to stop once more.

• Non-medication approaches: acupuncture, hypnotherapy, CBT/EMDR therapy, Freespira breathing program, physical therapy. Physical therapy on the diaphragm has been moderately helpful, but has not eliminated the spasms.

• The spasms are present nearly every day for 12-16 hours but they do not occur during sleep. They are worse when going from sleep to wake, and after eating/drinking.

• The stomach, chest, throat, and ears are all very painful. Gayathri cannot breathe or eat when these spasms are happening.

• Gayathri has lost 25lbs (20% body weight) and has no energy, even walking to the bathroom can be difficult.

Greatly appreciate your kind reply on whether you might be able to support us.

With gratitude,
Shobha