Wednesday, May 4, 2011

Crazy Good

I promised an update on my crazy good doctors appointment yesterday. Sorry it took me so long to get to. Things have been busy and I was just to tired last night. I must apologize, as usual I did not go back and ready my most recent posts, so if any of this is a repeat, I'm sorry.

Last week, when I went to the doctor,  I didn't get a chance to see him. When I go to the office once a week it is to access the port and do my first IV. A lot of times the doctor stops in and we chat but I hadn't seen him in a few weeks. I did have that phone call with him about my lab work so I was hoping to talk with him but I didn't get the chance. We did a big bag of IV vitamins at that appointment and I was sent home with IV Vitamin C to do once a day after my antibiotics. The doctor wanted to try this because of the amount of pain I was having. To my surprise, the intense joint and bone pain I was having went away. I haven't had it in a week. Yay. So yesterday I got to see the doctor for a regular appointment and the decision was at to continue with Vitamin C. I am hoping the pain continues to stay gone, of course. We briefly reviewed my labs again which were all good except for that Vitamin D level. I know it is common especially in women with Lyme to have low Vitamin D but I have already been supplementing. He didn't feel there was a specific reason I wasn't absorbing it, he just said to take a third pill a day. That is 15,000 IU of Vitamin D. He said it is really important we get it up so I am hoping this third pill works.  My CD-57, if I didn't mention last time, is 61 or 63. Over 60 is good for a Lymie. Here's to hoping it continues to rise back up to a normal range which is about 200.

As we continued our discussion about my progress, we decided I needed to go back on Tinadazole (Tindamax). In Lyme it is used as a cyst buster. Spirochetes like to ball up into cysts and you can't kill them  until you bust the cyst. So twice a day for 2 weeks, then two weeks off. It is really sad that I was on this earlier in my treatment and I don't remember how it affected me or why I stopped taking it. Who knows with my Lyme brain, maybe I just didn't refill it one time. Sad but true. I don't have a clue. I have to go back through my blog and my notes to see if I can find the answer. Then the really exciting stuff came. I can stop my Doxycycline. So awesome because I hate that drug with a passion. I also get to stop my Plaquenil. Two antibiotics gone! If I continue to feel good, we will get to a point where I can take a medication break for about 6 weeks. Then I will go back on for 6 weeks, then off again and on again. Doctor feels in 6 more months I will really feeling great. I'm a happy girl.

The next thing he brought up is way cool also. He decided to screen me for heavy metal toxicity. Now I have obviously been making improvements so that is a good sign. Heavy metals can interfere with treatment. Sometimes, when people don't get better or stop making progress, it is due to heavy metals. I have been wanting to do this for a while so I am excited. Just another thing to cross of the list. WARNING...TMI coming. For the screening, I have to collect 8 consecutive hours of urine and bring it in to my appointment. Then instead of my IV abx, they are going to give me a chelation treatment. (That helps get rid of the metals) Then following the treatment, 8 more consecutive hours of collection. They then analyze the difference and we go from there. So excited to get the results. My only concern, is the symptoms, detoxing heavy metals can cause. My Lyme cycle should be in about 1 1/2 to 2 weeks and I don't want to have anything else to contend with because I WILL BE BACK AT WORK.

Doctors release and approval for modified duty is done. Now I am just waiting for the final schedule approval from the City. My proposal is M,T,W from 8:30 to 3:30 so start. We will see how I do and go from there. A complete release to full time unrestricted duty probably won't happen until my port is out. I have been so nervous about this as I have shared but this past day, or two, or three I have been feeling fairly good besides being tired. So now I can say I am excited, still nervous, but excited.

The one bad thing I have to share is what my 7 year old daughter told me when I said I was going back to work. She started to cry and basically said- Mommy, even though I have missed the money (she knows things are tight) I don't want you to go back. I will miss spending time with you. I don't want to go back to daycare. Now if that didn't completely break my heart and make me cry. I guess I haven't thought of this time I have had off as worth much to my kids. I have been sick and just felt they were missing out on me so much. Who knew, even the sick mommy was better that the always working mommy. My goal is to not work forever. My kids need me. For right now though, it is what I have to do. God's in control and He knows what He's doing.

With that, I guess I'm done for now. I couldn't ask for a better week leading up to me going back to work. Busy softball playoff schedule for Jenna this week. Closing ceremonies and team pool party on Saturday and Mothers Day Sunday (even though Ryan has to work on Sunday). You know me by now to realize I probably forget something or will have more to say the closer I get to going back to work. Thanks again for the support. Don't forget May is Lyme Disease awareness month. Do something...Educate yourself, support my treatment financially, watch the amazing documentary Under Our Skin on Netflix.


  1. The urine collection stuff really isn't that bad. They'll give you an opaque container and everything for it. (I had to do it a couple of times for the pre-eclampsia while I was pregnant.) It's just pee. Imagine if they wanted something worse! (Says the mom who deals with dumping poopy diapers into the toilet every night....)

    SO glad to hear that you have some good news and reasons to be excited of late!

  2. That is AWESOME news!!! When you get back to work call me if ya need anything!!! Hugs!! I love ya girl!!

  3. I'm sooooo happy for you!!! Jess, this is the best news I have read in such a LONG time!!! YIPPEEEE!!! I'm thrilled for you and pray it keeps getting better and better!!! Huge hugs and lots of love-- Steph