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Lyme Disease Message Board


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Medical update: Went back to Jemsek Clinic today. I showed them the rash on my legs and ankles. Explained that it had been 2 yrs since I had this breakout, but many times over the years. Rash is a pin point red dot and lots of them. The red fades and leaves a permanant brown discoloration. (so much that is harder to see the red breakouts) Was told that this is bartonella. Have alot of the stomach problems, insomnia. She ask me about my throat. I do have a thick swollen feeling that sometimes makes me clear my throat. This actually has gotten worse probably about the same time the red rash came back. I start levaquin (I know about the possible problems that can cause) and septra. Will start that next week for 3 wks with a 1 wk break and then repeat.

I did test positive for both Babesia and Bartonella. Have had 2 rounds of treatment for the babesia and my low grade fevers are gone. But she did say that 2 rounds is not enough to get the Babesia. You can only kill it when the red blood cells divide and it is a guessing game. Get some and don't get some. She said you can never be sure you got it all and the same for lyme. There is no test to determine if you have lyme hiding in cyst form waiting to come out at a later date.

They did immune system workup again to see if my body is fighting. It wasn't when I began treatment. If it is working better now, I have a better chance to beat at least the lyme. I am thinking positive, I will beat all of this. At least now, I feel I am winning this battle. A few months ago, I wasn't sure.

Still having alot of "head" problems, pain, brain itching (best way I can describe it).

I did sign for the Jemsek Clinic to handle my BCBS of NC insurance denial. Hopefully they can get the insurance to pay for the IV treatments. (for those not familiar with this, insurance is trying to say they will only allow IV treatment for 8 wks based on what CDC says is all we need.) The staff at Jemsek were not familiar with Public Law 107 regarding lyme disease. They will review this to see if that is a reason that Insurance cannot deny.

I am also to try melatonin instead of ambien for a few days. If that does not work, we will try something different for sleep. Don't know if I can handle a few days of no sleep as that is probably what is going to happen. (she told me) Please say a pray for me. The sleep disorder can accompany lyme and bartonella.

Also told to have a Pro time (blood clotting time) every week. To make sure the new meds aren't affecting my clotting.

We will do all treatment oral, no more IV's. I think I've covered it all.

Prayers.....Marsha





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