Thursday, February 04, 2010

Lyme Log: Treatment Update

Here's a little glimpse at what I'm doing treatment-wise. I'm not sure where this blessed moment of clarity has come from, but I'm going to use to it write a quick blog!

Rocephin: I'm continuing to get daily infusions of the Rocephin. Right after the new year I increased my dosage from 500 mg daily to 750 mg daily. The typical dose for a Chronic Lyme patient is 2 grams daily, so I have a ways to go!

I tolerated the increase a bit better than I expected as the worst of the herx didn't last quite as long. Overall, I seem to tolerate the IV Rocephin better than I have tolerated the oral and IM antibiotics. One major advantage is that it doesn't upset my stomach!

Rocephin is great at getting at Central Nervous System Lyme.

Malarone, Plaquenil and Zithromax: During my phone consult with Dr. Lyme last week we decided to try to add in very small doses of these medications, all of which I was on when I stopped treatment in the Spring of 2009.

Most Lyme doctors don't use IV Rocephin without combining it with other agents. Part of me would like to plow ahead with just the Rocephin, but there are reasons to add in the other medications.

While many of the antibiotics treat Lyme along with the other tick-borne illnesses, they don't cover babesia. While I have never had a positive test for babesia, we suspect that I may have it.

Babesia mimics maleria, so anti-malaria drugs such as malarone and mepron are often used to treat it. Plaquenil can also help.

As for the Plaquenil and Zithromax, they can also target Lyme in different ways. The Plaquenil can help with babesia and also the cystic phase of Lyme.

Hopefully the medications in combination will have a synergistic effect.

The goal is to add in teeny doses of these meds and then begin increasing the Rocephin again.

I will be increasing the Malarone first. Before speaking with Dr. Lyme we had thought I would be able to resume my previous dose of 1 pediatric tablet daily (adult dose would be 4 of those). Note that most people don't herx from this medication and it is usually well-tolerated. :P

So, I started taking one tablet a day expecting to tolerate it just fine. Instead, I started out achey and feverish, then I had trouble sleeping. Next my ANS symptoms went berzerk with chest pains, shortness of breath and weakness. It was more awful than the Rocephin has been so far.

I kept gutting it out for the nine days until I talked to Dr. Lyme. At that point he said: Slooowww down. So, I stopped the Malarone on Wednesday last week and gave my body a bit of a break.

I resumed it on Monday, and will take it every 3rd day or every other day, however I can 'tolerate' it.

Then, I'll add in the other meds...

I felt (and still feel) frustrated that I can't go more quickly with treatment and that everything makes me so sick.

The hardest part about Lyme and other tick-borne illnesses is that there really is no 'standard' treatment. What works for one person might now work for another. Every doctor approaches treatment differently.

Dr. Lyme and I debated for a long while whether to add in other agents or focus on the Rocephin.

I felt that we made a balanced decision to add in small doses of the other medications and then push ahead with the Rocephin.

Last week was the first time Dr. Lyme has told me to slow down! I'm having a hard time knowing how sick to make myself. Sometimes I feel like if I just push harder now, I'll get to the 'better' stuff sooner.



Photo: Squirrel watching. Love how he has to wiggle in between the boots and the window!


Katherine said...

Dear Emily--I am glad you are talking to your doctor to get his guidance through this difficult and confusing time.

I am thinking of you.


Emily said...

Thank you for all this info, Emily. I always appreciate having more insight into your day to day experience. Thinking about you!