Lyme Log: Peeking Out From My Turtle Shell

"I believe that no matter what the weave on this side of the cloth looks like, God's creating something beautiful on the other side."
--from "Coping with Chronic Illness: Overc0ming Powerlessness"

On August 2nd I had my most recent consult with my Lyme doctor.

So far, my Lyme doctor has been very cautious about deciding whether or not I truly do have Lyme. As you may remember, my original test results were 'suspicious but inconclusive.' During this phone consult, after discussing how I am feeling on the antibioitics (miserable!), how difficult it is for me to increase my dose, and other symptoms my Lyme doc said that he was feeling pretty confident that I DO have Lyme. While still daunting to hear, this in many ways, made me feel more confident about the treatment path we have chosen.

I will try to sum this up for both the medically-minded and non-medically minded...hopefully there will be information for both here! (I have several Lyme Buddies, as well as POTSPals currently pursuing the Lyme diagnosis, friends who are super-medically minded and those who are not (Dad? Are you reading? Just teasing you!)

WHAT we decided: The Next Step in Treatment (the short version)

1. Stay at the dose of minocycline that I am currently at: One 50 mg pill two times a week.

2. Start an empirical trial of the anti-maleria drug, Maleron, to treat a possible co-infection called Babesiosis.

WHY and more details:

Often, when we are bitten by a tick, it can carry other tick-borne illnesses, not just the bacteria for Lyme disease. These other illnesses are called co-infections. The antibiotic that I am currently taking, minocycline, is very effective in treating Lyme as well as all of the other co-infections EXCEPT one called Babesiosis.

Maleron, the anti-maleria drug, is used to treat Babesisosis. At this point, my testing does not show any evidence of babesia, but upon further discussion of my symptoms we decided that it would be worth trying Maleron.

It has taken me quite a while to reach the dose of 2x a week for the minocycline--and it still makes me sick and I am still 'herxing' most of the time (having increased symtpoms). So, we will stay at this dose while adding in the Maleron.

According to my Lyme doctor, Babesiosis can also make a person very, very sick. He has had many patients who weren't improving on the antibiotics much, and when he added in the Maleron, they began to see some steady improvement, without much herxing. So far, during his five years of using this drug, it has been well-tolerated by his patients (knock on wood, he always says!)

Babesiosis has many of the same non-specific symptoms that Lyme does, such as fatigue, muscle aches, etc, so it is difficult to distinguish between the two. We discussed how lousy I feel--how I feel sick ALL of the time, am homebound/bedridden/recliner bound, how it is so difficult to even describe how sick I feel. I often feel too sick to do anything but lie there and think about how sick I feel...too sick to rest, too sick to sleep, too sick to watch TV, too sick to do anything.

He just 'got it' and said, YES, what you are describing is what my patients describe, especially those who sometimes end up having the co-infection of Babesiosis. He said that it produces this 'incredible feeling that you can't describe'. He said that people realize how sick Lyme can make a person, but don't realize how awful Babesiosis can make a person feel. I also spoke to him about my level of cognitive difficulties--the inability to read at all and he said this is very common for Lyme patients.

So, after I have been at this dose of minocycline for a couple more weeks, I will add in the Maleron at a very teeny tiny dose (since I am so sensitive to meds!). I teased him about how I always defy the odds when it comes to meds b/c I always have some unexpected bizarre reaction--he patiently acknowledged that it's not my fault that I am sick and my body is so sensitive! Each time I speak with him I feel more and more confident in him and also feel that he really 'gets' how I feel and how my body works.

I will start with the pediatric dose of Maleron (which is 1/4 of an adult dose) and increase as I am able to a full adult dose. After a month we'll run labwork and touch base as to where to go from there...

Back to my turtle shell...

Blessings,

Emily

Photos: My beloved gladiolas! I had a 'good moment' and we managed to get this picture of me with the gladiolas that are almost as tall as I am! I, of course had to sit back down right away! This batch has come back on it's own for the past couple of years! Spectacular! We've enjoyed fresh cut gladiolas in the house for several weeks this summer.