Update- not so good
 

Yesterday I was standing in the shower and I felt like I was stabbed in the neck with an ice pick. The pain radiated through my right side head, upper back and through my shoulder. I have been up all night with severe pain and my pulse is throbbing very intensely. Muscles twitching like crazy and incredibly weak.

This is how my onset was. I never thought I would go through anything like this again. I was doing so well and thought I was recovering. I cannot move my neck and my nerves through out my body are flared up. I hadn't had to take pain meds during the day since February. Yesterday I had to take them all day and even the narcotics aren't helping. I am going to call my neuro and ask when I can start steroids. If I have a bad reaction from the steroids, I will contact the lyme dr. and take what ever he wants to give me.

I was excited about life again. Feeling like me. I could see straight, drive, take care of my kids, do my housework.

I don't know what is going to happen and if I am about to be debilitated again, but I feel exactly like I did in September. This pain is absolutely unbearable.

As far as the diet goes; I felt hungry all the time so I did add a small amount of low lectin/ phytate starches back into my diet, but I really can't imaging that is why I am in this situation. I was doing better before I even implemented the diet than I am right now, so.....

I am so sorry to read this. I hope you find some relief soon. I know how hard it is for me to sleep when "flaring". I take melatonin and try to calm myself.

I wish I had more comfort than to share that for me it intensifies and abates back to the plateau or most of the way back. The fatigue that accompanies it all is equally difficult.

Thinking peace and comfort with you in mind.

Jon

I am so sorry to hear this. I was hoping that we hadn't heard from you because your diet was really helping you. If it abated once, then it can happen again. Take comfort in that thought, you were almost normal for many months and u will be again.

So very sorry to hear of your setback. Not good news, and I feel for you.