Saturday, June 5, 2010

6-5-2010 Update

So to start, we discussed my poor reaction to the 1mg of LDN. Then we talked about how I had been feeling since January. I told him how shocked I was that my blood tests were so poor when I felt so wonderfully normal when they were drawn. He too seemed shocked that my test results were so low. All of the low things concerned him, but the thing that was extremely worrysome was that in addition to having low platelets and hemoglobin my typically normal White Blood Cells were flirting with the low normal line. In addition, even though I was on oral Iron capsules and Vitamin D drops, both of those were also low.

Based on my labs in march, there is a chance that I am actively bleeding somewhere in my body. He said more than likely it's in the GI area. However, I do not have any symptoms of a GI bleed. There is no stomach pain, back pain, diarrhea or obviously bloody stools. He also said that it's odd that someone so young would have this kind of problem. The only thing that gives him the idea is that my blood levels are so low. So he sent me on up to Lab Corp to have the labs redone.

While we were discussing the possible active bleeding, we also talked about my low iron levels. In layman's terms, there is no need to replenish a gas tank with gas if that tank has a hole in it. In other words if there is an active bleed, no need to waste perfectly good money by putting in intravenous iron because it will just come out again. So we wait for a few days to find out the results of my lab work.

If the test comes back similar to the results in March, then I'll have a second test. Second test is a little gross, but simply put they will be testing to see if my BM's have blood in them. If Lab work is Bad and the Stool test has blood, then I'll be going to see a Gastroenterologist to see what is going on. If the sample shows no blood (and my labs are improved), then I will start IV iron since my levels are overtly low in order to replenish my iron and it should improve my hemoglobin levels as well.

Since my Natural Killer Cells are also low, I am at severe risk of the Lyme Disease pouncing back and I could be back to square one. The biggest problem I see with that is that the treatment that helped me the most is no longer available for my usage. So we must get my Natural Killer Cells back in the normal range in order for me to continue fighting Lyme Disease. LDN is my option for doing that. So I will be taking LDN slow and steady. We're talking really slowly.

I will begin by using only 1/2 of the capsule every other day. Then I will move to taking 1/2 capsule 2 days off one and then 3 days off one and so on and so forth until I am on 1/2 capsule 7 days with no problems. Then I'll move on to 1mg 1 night, 1/2 caps for 2 nights. We'll do this until I can reach a therapeutic dose (hopefully we'll reach the 4.5 mg). In the meantime, I'll be using another supplement in addition to the really low dose of LDN. In addition to this, I'm increasing my Vitamin D drops from 10,000 units per day to 20,000 units per day.

All of this is a lot to digest since I have been feeling so well this year. I'm just praying that my blood today looks better than March. Unless something drastic happens (like what happened this week), I'll be going back in July for another check of Ferritin, Vitamin D and CBC blood work before my follow up in August. If my tests from this past Saturday are okay, I'll be starting IV iron as soon as possible so that I can complete my iron IV's before my blood work in July.


MarilynK said...

I'm so sorry that you're showing symptoms (via blood work) of a bleed.

I am saddened with the potential waiting time between blood draws and other tests.

You may think that the next test possible (the stool sample) is a "little gross," but of all your tests that is the simplest, cheapest, and fastest one available. (Most doctor's office have the little cards and the reagent on hand so that it can be done right there.)

Most people don't "see" occult blood in their stools (that's why it's called occult). Not every bleed causes tar-like stools or blood red ones. But it can be just as dangerous, especially for we who are immunocompromised.

Having had 5 bleeding ulcers myself, I'm scared for you and hope you can get that stool test sooner than later.

My prayers are with you.

Jennifer said...

Well, he sent me home with the card so that as soon as I got the "go/no go for test" I could begin it. Then he said I could bring it in on any day after completing the test for her to test there on the spot. So That's good.

It's just really crazy that I absolutely have zero symptoms other than the weird blood. No weird stool, no heart burn, no stomach or back pain, no nothing.

If I don't hear from the docs by Wednesday, he said to call up there and ask his assistant about whether the results had come in (the lab is REALLY bad about sending them in) and whether I needed to take the 2nd test. So theoretically, I'd do (no pun intended) that 2nd test next week if the blood work indicates.

LymeFighter11 said...

Jennifer, I am alexa 14 yrs old, and I am from Raliegh too! I have lyme disease also, and I have had it for about 2 years but I was just diagnosed a couple weeks ago/: it's nice seeing someone else who is going through it too, so we can talk! I feel your pain! You're not alone.

Check out my blog at

Kara said...

Hi Jennifer, So good to get an update. Your doc has a good game plan which sounds terrific. He is making sure all will be well in the end and that's what is just fabulous! It is so nice you have a doc that notices things and gets right on top of them. :-)

I am praying for you ... all the pices of the puzzle will be put together soon and then you'll moving onward and upward! ~Kara