** if you read this before 5:45pm, read it again. I have edited it since then **
This morning I finished up my message about waiting. I wrote this:
"That was in 2007. Here we are in 2010 and I'm still waiting. Waiting for the other foot to drop. I have been pretty well the last year or so. I've been told that stressful events can cause relapse."
My husband's LLMD appointment was this morning. At this point, we're mainly concerned about his liver, sinuses, yeast and weight. During his appointment, we discussed how we've not been able to really keep on top of our dietary needs because of all the stressful events over the last month. Of course, my LLMD was worried about my own relapse. We briefly discussed the LDN that I'm supposed to be on. Well LDN causes me to have serious nightmares that keep me awake. So we discussed how when I come to the office in July that he will probably give me a prescription for a smaller dose of LDN in order to keep my immune function in check.
As my husband and I were checking out, I asked the office staff if I could have a copy of my most recent lab results. I figured if I could take a peek at them, I would know exactly what my LLMD would say in July. I wasn't worried one bit because I have felt pretty good and in March when the labs were taken I felt awesome. Well they ahd trouble locating the labs and wound up calling the lab to get them faxed over. I glanced at them and my stomach hit my feet. I ran back to the nutritionist's office to pick up one specific supplement that I knew the doctor would have me come in for once he saw the labs. I can't believe the other foot has dropped. I'd say it's unbelievable, but it really isn't. I expected it, but I didn't. If that makes any sense at all, you're better off than me.
There are several results that are concerning. The first thing that jumped off the page was my blood counts themselves. My Platelets are in the toilet. My Hemoglobin & hemacrit are also low. My iron level is not where it needs to be either. It's not under the normal limits, but this is one that my doctor prefers to be higher than the lower limits of normal. This is one test where my doctor might be led to suggest IV when I go into the office in July. As you may recall, I do not want any more IV's. My arms have suffered enough and all the staff is new. I really don't want a newbie messing with my arms. Newbies just don't understand the requirements to start IV's on my arms or even simple blood draws. I mean I could give them the benefit of the doubt, but I've been through blood draws the last 15 years and IV's the last 3 years.
My CD 3 was too high and my CD56 was too low. I really don't understand what these mean, but I get nervous when anything is out of whack. My Vitamin D is also in the toilet. This one we just are having trouble getting it to go higher. I usually take 4,000 to 6,000 of Vitamin D and now I'll be on 10,000 to start.
I got the results a little before 10am. By 12:35, I've received two phone calls from my doctor's office. One was to tell me that my prescription was in the process of being sent to the specialty pharmacy in Florida and the other to increase a supplement I had just purchased (the Vitamin D). I'm still waiting for the pharmacy to call. I hope they call soon so I can start the new medication.
I hate that the other foot has dropped. Weird thing is: I feel pretty good.
Saturday, May 22, 2010
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7 comments:
You are fortunate you have a physician who pays attention to the borderline and slightly abnormal lab results, they are a warning signal that you need to do something different.
I am in the shape I am in because I had multiple physicians dismiss slightly "off" labs and report them to me as normal.
The body will keep trying to right itself until it becomes impossible and then you will feel sick.
Renee, I just reworked this post. Check out the changes. :)
Yes, he really doesn't like low end of normal test results. He believes that those are a sign of illness.
Ok, misunderstood, thought the LLMD had done the tests, Lyme Brain at work
My CD57 is now actually lower than before I started treatment, it was 88 and now it is 69 but my c4a was high and now is normal.
some aren't putting much stock in the cd57 anymore.
I had low ferritin, platelets were ok, vit D 11...I now take 4000 daily, my doc says the lyme blocks the D receptors or blocks the conversion of D to the useful form, stuff I don't fully understand
I hate to say it but I still think we are stuck with Lyme for life and can only control it. No treatment will be the same forever, we must constantly adjust according to symptoms, labs and life's circumstances...it isn't fair but seems to be the way that it is
Renee, My LLMD did run the tests.
Hey, girl. Oh, gosh, I'm not sure what to say ... so sorry you are struggling. You are in my prayers. So glad you have a doctor who keeps a close eye on things and responds quickly when he sees a negative shift. My LLMD is the same way. :-) Thank heaven there are some good docs out there! I'm sure he will take good care of you and your body will respond quickly. :-)
Sending much love and many {{hugs}},
Kara
Yeah he's awesome. I mean his office received my labs around 9:45 or so. His office called by 12:30 to let me know about him ordering the new script. I just love him and his weird ways and his broken arm (don't ask .. his arm was in a cast today. I told him they make supplements for brittle bones and he said, "they don't make them for clumsy." I sneezed out, "Lyme disease." ;))
Sorry to hear the news & glad that you're feeling ok - hope you get things straightened out (as well as we can in Lyme world) & that you continue to feel good!
blessings,
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