A recent Milwaukee Art show where my daughter exhibited some of her work.
If you’ve been reading my recent posts, you are aware I did a stint at the UW Hospital and a few ER visits for what doctors are calling an allergic reaction to Disulfiram/Antabuse. Please note, that while I responded very poorly, I’ve heard wonderful reports from others using the drug. To read all about my experience: https://madisonarealymesupportgroup.com/2019/10/14/november-2019-lyme-support-meeting-oct-meeting-canceled-due-to-reaction-to-disulfiram/ and https://madisonarealymesupportgroup.com/2019/10/15/disulfiram-psychosis-update/
For those of you who recognize my daughter, just a year ago she put on “Killer Green,” a musical about those struggling with Lyme disease: https://madisonarealymesupportgroup.com/2018/02/09/killer-green-the-musical/
It was moving to say the least and I thank all of you who came to support her. Every seat was filled performance after performance with many patients attending. Many asked her how she could portrtray their struggles so succinctly. The answer is she saw both her parents on a daily basis fight to regain their health. For those of you struggling, I want to offer you hope – both Greg and I are symptom-free after a ten year battle. For the first time in years we have perfect health. So chins up and keep waging your personal war with stealth organisms who do not know the definition of grace.
Our regular support meeting will be:
- Saturday, November 9, 2019
- East Madison Police Station – 809 S Thompson Dr. Madison, WI
Hope to see you all there!
As most of you are probably aware, I spent over a week in the hospital and a few trips to the ER recently. It was very serious. And yes, I’m talking deadly serious. According to the doctors at UW Madison, I had an allergic reaction to Disulfiram, an old drug that is currently being used on Lyme disease patients. It was very frightening as I had psychosis. More accurately, I had a toxic reaction, and I’m not alone.
Psychosis is an abnormal condition of the mind that results in difficulties determining what is real and what is not – and that is the understatement of the year.
Symptoms may include:
- delusions and seeing or hearing things that others do not see or hear
- incoherent speech and behavior that is inappropriate
If you are a medical practitioner prescribing this, please be aware of this issue.
Treatment for psychosis is antipsychotics, counseling, and social support. It’s interesting that 3% of people in the United States could get this. https://en.m.wikipedia.org/wiki/Psychosis
All I can say is, WOW. I looked outside and it’s fall. I’ve missed nearly 3 weeks of my life.
My dear husband of 30 years was my bulwark and unfortunately took the brunt of my psychosis. The good news is he’s still with me. We’ve now weathered through both being infected with Lyme/MSIDS and now we can add crazy, unbelievable, psychosis to the list of symptoms and conditions.
The next Support meeting will be Saturday, November 9th, at 2:30 at the East Madison Police Station. Details about the subject matter will be forthcoming.
I can’t wait to see all of you. Being with other sufferers gives me untold joy and comfort. I pray you can all make it, but if you can’t, I understand.
Still Crazy After All These Years
Blessings and health, Alicia
Don’t forget our next support group meeting: Saturday, September 14, 2019 at 2:30. https://madisonarealymesupportgroup.com/2019/08/14/september-2019-support-meeting/
I’m planning to present an hour long slideshow to educate people on what Lyme disease (MSIDS) really is, the ongoing controversy about how to diagnose, and treat it, many of the issues keeping people from becoming well, and a general over view of tick-borne illness. This is a great refresher course as well as a great opportunity to educate family and friends interested in learning more.
There will be plenty of time for Q & A afterward as well as time for support and help.
Hope to see you there!
Our Next Lyme Support Meeting will be:
Date: September 14, 2019
Place: East Madison Police Station, 809 S Thompson Dr. Madison, WI 53718
Don’t forget our next meeting will be April 13 at 2:30. A member of group is going to share practical tips for gut health and nutrition. Bring a notebook to take notes.
Details here: https://madisonarealymesupportgroup.com/2019/03/11/april-2019-lyme-support-meeting/
Besides distributing flyers for Lyme Awareness, I will be bringing cards you can send to practitioners requesting them to become educated on tick borne illness. These post-cards can be addressed to physicians in the Wisconsin area that are open to continuing education courses (CME’s) on treating Lyme/MSIDS.
Please post the flyer on social media and distribute around town as well. We need to do all we can to spread the word on this 21st century plague that is destroying lives and taking childhoods away from so many youth.
See you there!
Sorry for the late notice. Just got this.
What: Rockford stateline Lyme Support Group meeting tonight (Wed. March 20,2019)
Mercy Hospital off of Riverside and tollway 9, Rm B3 downstairs next to the cafeteria in the basement
Subject: guest speakers that are talking about Hemp oil and Lyme disease.
Don’t forget today, Monday, March 18, 2019 is the DEADLINE to register for the Lyme workshop. Details in link: https://madisonarealymesupportgroup.com/2019/02/16/wisconsin-lyme-workshop-in-march/
Also, our next support group meeting will be April 13, 2019 at 2:30. A support group member has graciously agreed to share what he’s learned about tips for gut health and how you can implement these practical ideas yourself at home.
Our last meeting of the year in May, Lyme Awareness Month, will be a FREE viewing of “Under Our Skin,” the best primer on Lyme disease on the market. I hope to bring copies of the poster in April for all of you to help distribute. It’s a great event to bring family, friends, and anyone who needs to be educated.