Madison Area Lyme Support Group

November 2019 Support Group Meeting

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
• 2:30-4:30pm

Hope to see you all there!

November 2019 Lyme Support Meeting (Oct. Meeting canceled – Due to Reaction to Disulfiram)

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