And the doctor said....

No more monkeys.... jk - Have that in my head today guess cause people are asking what the doctor said. Anyhoo - I did get a call back from the doctor yesterday evening. He went over most of the labs - however the Lyme Panel will not be back for 2 more weeks - which we knew. He wanted to check my thyroid again to make sure it was not too low... it was fine. He wanted to check my B12 again... it was fine so now only one shot a week not two :). As well as all the other things like liver, kidneys, white blood counts and more but you get the idea I think... everything looked fine. He also ran a test called CD57. This test is a standard blood draw with LabCorp - not Quest - and yes it makes a difference. It is not a diagnostic test but is used as a marker for Lyme being active. So the doctor wanted this one ran before the others came back as bonus info. If this test is positive, then it is Chronic Lyme Disease. He said he's never seen a case where it was a false positive. .....If your results are above 200 then no need to worry for Lyme. 0 - 60, is seen in chronic Lyme disease. If you're 20 or less this shows a severe illness. And if you are 60 or higher that means Lyme activity indicates improvement - the meds are working. They tend to perform this test many times during the treatment process to see how the lyme is reacting to the meds and to see if once "cleared" you will have a relapse. My level was 20 for the CD57. I asked what that meant for me and he said we had a big fight on our hands but we're taking the right steps to win. He did say he thought there were co infections along with the Lyme but more info on that will come when the Lyme panel comes back from CA. Co infections are very common for Lyme - the tick usually does not carry just one type of bacteria. So we will figure out a new game plan once we have more results. For now.... I am taking my meds and start the new antibiotic today.
What i feel you need to know....
I know this is going to be ok.
Please know this and dont read this with sadness.
I am not putting these updates up here for pity or fear.
I am updating for the most part because I do not really want to retell this over and over again. I'm happy to talk about it with anyone who wants to but it's just easier not to have to "retell" the whole story each time.
I am also updating this because knowledge is power friends.
How many of you or your friends or family have been bit by a tick?? lots I'm sure. And again I will say... No not every tick carries this bacteria you're right BUT this is a tricky tricky little bug! Not everyone gets the fever and rash after a bite. Not everyone knows they were bitten. Some get sick right away and others like me have it for 25 years and never know that's what's been wrong all along. Im not saying run out and get tested or stop going camping or anything like that. Im just saying be smart about it. Look up the symptoms, be aware of the bugs you come in contact with and dont take no for an answer when it doesnt feel right in your core if you are not well.
I also want you to know that on these meds I will have good days and bad days.
So if I make plans and then cancel please know it's the last thing I want to do - trust me. I have a hard time saying no, feeling like I've let someone down or taking a break - but I will be doing it more often now - which will be super hard for me. The one sure way to know if the meds are working is to make my symptoms worse - NOT better. The meds will slowly kill off one bacteria cell at a time and then that cell will break off into smaller pieces and then my body will fight those smaller pieces. All the while toxins will be released into my body as they break apart - this is why I will feel worse because the meds are working. So I honestly do not know what to expect from day to day. So when I say yes I want to go do a 5K with you on Monday - come Tuesday my body might be giving me a different answer. (LOL 5K who am I kidding) you get the idea :)
Lastly have Faith for me and with me :)
This too shall pass and who knows who I'll get to help along the way :)
More updates to come Im sure