Thursday, April 5, 2012

Possible Lyme Firsts For Me

I was diagnosed 5 years, 1 month and 4 days ago. I have tried many things including some conventional medicine and very unconventional medicine. I have had a PICC line. I have had many firsts.

Today I sat on my LLMD's loveseat and listened to him talk about the two well known LLMD's he has visited since my last visit with him in February. He talked about the homeopathic treatments and oral antibiotics that I have tried. We talked about how they made me feel. We talked about my symptoms, past and present. We talked about things he really hasn't done that many times and I thought about how often I jump on the train of things he hasn't really tried. I thought about how I really am my LLMD's little guinea pig. We have seen things that have worked (but aren't allowed anymore and that really makes me angry) and things that haven't worked at all.

My immediate plan is to give myself a 3 to 4 day break off of all the homeopathic medicines I have been taking to see if my body will improve. If it does improve, I will start over. I have three vials of homeopathic medicines. I will start with the first vial (targets Lyme). I will start off with 6 drops twice a day and increase everyday until I get to 20 to 25 drops twice a day. Then at this point, I'll start on the second vial that targets Bartonella. I will do the same thing with it and then lastly start the vial that targets Babesia. This could all change once my LLMD speaks with the creator of these vials. He wants to talk with her and find out her opinion on my case.

The past few times we have talked about oral antibiotics and I think my LLMD wants to try this route again seriously. My stomach churns just thinking about it. We think based on my symptoms that I have untreated Babesia. Until recently, Babesia had not even been on our radars. However, he learned a lot more about Babesia during his visits to New York with the other two LLMD's. So with this information comes a possibility of new firsts.

In order to target Babesia, there are several medicines that are used. I have heard about all three possibilities and my stomach turns just to think of it. The one my doctor would probably use (we talked about it at length) is known in the Lyme community as "yellow paint." The medical community calls it Mepron. The other antibiotic would be Zithromax. I have had Zithromax, but I have never endured the yellow paint.

In addition to this, he wants me to consider other lyme antibiotics as well. We're thinking about Ceftin, Rifampin ("orange urine") and then Grape Seed Extract. However, ultimately he wants to consider something I never thought I would hear him say.

IV ROCEPHIN.

I'm processing. I have a couple of phrases that I use almost daily. The first one is, "It is what it is." There is nothing I can do about it. I have Lyme and it is what it is. The second one is, "Go big or go home."

The following words scare me: Mepron, IV Rocephin, Rifampin, Ceftin, Grape See Extract. All of these would be firsts for me.

It is what it is.
Go big or go home.

Of course I have to wait for my LLMD to decide, but ultimately it is my decision. There are benefits to both treatment courses. Both treatment courses are expensive. Both treatment courses have their downfalls. I don't know what I want to do yet, but I do know that I trust my LLMD.

Here is the truth, the gut wrenching truth. I must admit I am scared, but I have learned a thing or two in the past five years. In order to see the beautiful rainbow, you must go through the rain. People always ask how I can stay so positive with everything I have gone through. I try not to let others see my weakness, my negativity. I am not 100% positive 100% of the time, but I do try to bring the joy to others. I say bring it. Bring the joy. Bring the pain. Bring the Lyme and Bring the rain.

Praise you in this storm: Casting Crowns.

9 comments:

mnotaro@comcast.net said...

I wish I could be as positive as you! I was only dx in January but have been symptomatic for 4 years. I am 4 weeks into rocephin iV and feel no improvement yet. It's discouraging and I get really down! I love your blog though:)

Krystal J. said...

This song is PERFECT for Lymies!!! "Choosing" to praise God through it all is very difficult, but very necessary!!

Jennifer said...

Thanks ladies. I enjoyed reading your thoughts. I'm so sorry that you've not felt any improvement. I hope that you are taking some additional support and other treatments other than just IV Rocephin. While IV antibiotics kill Lyme, just relying on one treatment will not work.

Krystal, I love the song and think it's one of the best ones for us with Lyme.

Heather said...

Wonderful song! Don't fear the "yellow paint" if you have to take it. It's gross, but Babesia treatment got me over a huge hurdle so it's worth it!

Julieslymediseasefight said...

I have been on many of the above drugs. I am currently on Rifampin, I thought it was funny that you mentioned the orange pee. No one told me it would do that so that was a little surprise for me haha

Jennifer said...

Heather I am worried most about "yellow paint" orally.

Julies, it was one of the first antibiotics I heard about with a weird side effect of weird colored urine. I wonder what color the urine would turn if you're on b12 shots too. cause that in itself causes the urine to be weird.

Julieslymediseasefight said...

I also took the yellow paint. That makes you pee bright yellow! lol ~Julie

Jennifer said...

So if one makes you pee bright yellow and the other orange and then the b12 makes it some shade of weird red, what color does it turn into with Mepron, b12 and Rifampin combined?

Julieslymediseasefight said...

Haha I have no idea! I was on mepron a while back when I wasnt on rifampin.