Sunday, July 13, 2008


It's been a long day. The methylation protocol, new antibiotics, restarting the Anti-Babesia Herbs, and restarting Argentyn 23 (colloidal silver) is kicking my butt.

I posted on one of the boards I'm on about the methylation protocol. The feedback was all similar-go slowly. I followed my doctor's instructions even though I know from experience to halve whatever he recommends. This time I didn't. Nor did I follow my peer advice. I think with the new treatments toxins are being released to fast for my body to process. I feel lousy as a result.

I woke up with pretty bad muscle aches, nausea, lack of appetite, increased dizziness, and some weakness. I drank lemon water which helped a little though not as much as usual. My mood hasn't been the best. I feel quite discouraged wondering if I'll ever get any better.

I think somewhere inside me a molecule is aware that this is all part killing all the bugs. When I'm in the midst of feeling this bad, it's hard to maintain perspective.

This is such an isolating illness. I miss being around people but I can't promise that I'd even be able to follow through with anything. Days like today also put me in touch with how much grief I feel over the loss of the life that I had. I try and not think about it but sometimes it gets to me. I was always trying to build my life without ever quite settling on accepting how it was. Now I'm forced to accept it-for better or worse. Accept it I may but I'll refuse to stop fighting for it to get better.

I did have two victories this week. One happened last Weds when I was able to drive all the way into Oakland (3.5 miles) to get my blood drawn at a lab. I arrived at the wrong address but decided to walk since the lab was at most 2 blocks away from where I parked. I didn't see the hill that was staring me right in the face though. When I stopped the car I felt a sigh of relief that I made it, and an even bigger sigh of relief that I was out of Alameda for the first time in 3 months since my doctor's appt in Santa Rosa. It was hit and my car's air conditioning doesn't work so I opened the bottle of Calistoga I brought. Water spewed all over me. I guess the hot weather made the Calistoga bottle act as if it had been shaken. I humbly walked up the hill, soaking wet from the water. I haven't walked up a hill since being in San Francisco in December so that was also new. The things I used to take for granted. I loved walking up that hill. It wasn't easy. Because the lyme is in my brain, it affects my walking at times making me stagger. It's just a little and I don't know if it's that noticeable. It probably looks as if I'm walking while reading a book when you stagger because you're not paying attention to where you are going. The only problem is I'm not reading a book and walking.

When I got to the lab I was sweating and wet from the water but I felt very pleased with myself. I sat down and waited for my name to be called. I felt a bit faint. Whenever this happens it's also accompanied by some anxiety. I just hate, hate, hate fainting in public. So then I have to do some work to calm my anxiety down. My ipod was good for that. I knew that hill was not good to do but I needed to walk it. Then my name got called. The technician put the needle in my arm. For some reason I made the mistake of looking at it prior to her putting it in. I never do that. I saw there and waited and waited while she drew vial after vial of blood. She kept tapping my vein, shaking the tube. I was feeling a bit lightheaded so I tried to make conversation to distract myself. She wasn't a talker though. I'm sure it gets tiring having anxious people make desperate conversation. It was taking a long time to draw the blood. Then she said "come on little vein don't poop out on me now." Wha? My vein is pooping out?! What does that mean?! OMG, OMG! I felt even more lightheaded. I thought I was going to pass out and fantasized about ripping the needle out and running away. Finally it was over. It was only 8 vials. Having 7 vials drawn a couple months ago didn't take nearly that long. I don't get it. I guess my blood is thick? Who knows.

Then my second victory was that I got my hair died yesterday. I made it through a 2 hour appt. The shop was very quiet for which I was very grateful. There was one lady who came in who sat next to me for a little while. She started making funny sounds with her mouth. Little does she know how close she came to having a fist in it.

Anyway, I was pleased to have made it through the appointment but not so pleased with the result. At all. I've never had red hair before. While I think it looks great on many many people, I'm not one of them. It's not red so much but a light red. It looked good before she put the highlights in my hair.

Today we went to Border's which is now here in Alameda. I was feeling pretty dizzy so the escalator ride was a bit interesting. I've been looking for some nice paper so I can write letters to my dad. Since I can't drive far I'm limited to what's here in Alameda and so far I've been unable to find anything except for tacky stationary. It just doesn't seem right to write my dad a letter on copier paper. We still don't know the results of anything.

I found a book in which I had left a piece of paper that my dad had written instructions for a card game. I felt big pang of missing playing poker and other card games with he and LuAnn when I would visit. Somehow it was this symbol of a past that would never again be part of the future and I cried.

Sometimes it's just a drag that the present always becomes a memory. When ill those memories can pack a punch.

I'm trying to establish a sense of community online. I'll write more about that later. It's time for dinner.


Anonymous said...

Hi Terri,


You WILL get your life back, I just know it!! You are truly a warrior - and I know you'll never give up. Just remember that you are not fighting this alone, o.k.?

Love you!

Anonymous said...

Hi Terri,
I just read your blog and wanted to wish you good health. I am a CFS EBV survivor. I also live in the bay area. Over the past ten years I have built a network of holistic practitioners who have helped me get to a place in my life where the disease is all but gone.

I am currently doing some heroic doses of colloidal silver. I am experiencing some die-off this week. It sounds as if you experience die-off as well. I'm not sure if you are doing and hydro colonic therapy at the same time but it virtually eliminates the die-off symptoms by flushing them from your system.

Good luck...Keep the Faith...You will get better and be stronger from this challenge...

peace, love and health


cfswarrior said...

Hi Sean,

Thanks for your comment. It's always great to hear that someone has recovered from this disease. If you read this and are willing to share the names of your holistic practioners and/or what sorts of treatments you used that would be great.

Colloidal silver hits a lot of bugs. I definitely had die off from it.

Thanks again for your comments! Keep in touch!