"Don't be afraid to give up the good to go for the great."
--John D. Rockefeller--
This may not be the perfect quote, but it does capture to a large extent why I decided try, risks and all, IV antibiotics to treat my Lyme disease. It's a constant struggle to find the balance between acceptance and continuing to pursue more healing options. I also live day to day, moment to moment and try very hard to accept that 'good enough is good enough' a lot of the time.
Still, when it comes to my health, even with all of the treatment we've done so far I'm still incredibly compromised physically.
I have written a long and detailed entry explaining my decision and the reatment to come for those of you who are interested in understanding more about it. If not, feel free to hit the delete button. I hope I have answered some of the questions many of you have been asking! :)
The topic of IV antibiotics is a controversial one. It doesn't come without risks. And it comes with no guarantees that it will work. It means that I will likely be very sick during the time I am on treatment. The hope, of course, is that taking the time to be sicker now and taking a few risks will, in the end, result in higher functioning and better quality of life for me.
After much discussion with Dr. Lyme, Dr. ANS, and Dr. PCP I had all three doctors on board. And despite the fact that I was not supposed to discuss the 'unmentionables' during my time off of meds, after August 20th our family spent a great deal of time discussing what to do. Could Mom do this while being back at work? Could Dad and Abbie manage the time commitments too? Were we willing to take the risks involved? Did we have the emotional, physical and spiritual energy left to do this? My parents both still look like they might faint when the issue of the port is discussed. Thankfully, Abbie is very calm about these sorts of things!
So why IV antibiotics?
Making the decision to try IV antibiotics is a very individual decision. For us, it came down to a risk-benefit call. Did the benefits outweigh the risks? It also came down to the fact that, even after a significant amount of treatment and gradual improvement over the past 3 1/2 years, I still have a long ways to go!
At this point, I have 'knocked down the burden of infection a lot,' as Dr. Lyme puts it. This makes IV antibiotics more of an option now than when we first started treatment, as I would not have been able to tolerate them given how sick I was and how sensitive I am to even small amounts of antibiotics. IV antibiotics weren't even on the table as an option early on, so the fact that we even began to consider them was actually, in many ways, a sign of progress.
How are IV antibiotics different from other forms? What antibiotic will I be taking?
Rocephin is the most commonly used antibiotic for IV therapy in Chronic Lyme patients. Unlike oral or intramuscular forms of antibiotics, IV Rocephin is extremely potent and has the ability to get EVERYWHERE in the body. And believe me, Lyme lives everywhere in the body!
How long will I be taking the antibiotic? How will it be administered?
As long as I am tolerating the Rocephin, we can continue it for up to a year. We expect that I will be on it for at least six months.
I will administer it myself through a port on a DAILY basis.
I am meeting with the surgeon on Friday to discuss port insertion and hopefully he can squeeze me in for the procedure next week.
Until then, I am continuing to receive the IM injections every weekday. We've found a way to give the shot that is NOT painful...so I'm okay with a few more injections before port insertion. We've had a nice amount of time to make sure that I am tolerating the medication before going through the surgical procedure of port insertion.
What are the possible risks?
Dr. Lyme went over the risks with me before the benefits. After we got through the risk part of things, I said "So now that you scared the crap out of me, what are the benefits?!"
As with any antibiotic there are risks of adverse reactions, getting yeast infections (in the entire body) or C. Difficile bacteria because of the high amounts of antibiotics throwing off the balance in the gut, alterations in liver and other functions, etc. The risks with IV antibiotics are greater than that of those with taking the oral form, but not significantly enough to rule it out as a good treatment option.
More of the risks come from ports--and believe me, I've heard plenty of horror stories. The biggest risks are clotting and infection.
There is also the possibility that this treatment will not help me or be effective.
What are the benefits?
As I said earlier, the major benefit is the potency of the medication in IV form. The IM and oral forms of Rocephin do not penetrate everywhere as deeply.
Rocephin does a great job of penetrating the Central Nervous System (CNS) which also makes it a good choice for me. Drugs like bicillin have targeted the muscles, organs and connective tissues, but so far we have not really tackled the core of the Lyme in me.
Some people actually do better on IV antibiotics than oral. Let's keep our fingers crossed on this one! So far, I've been doing much better than I expected on the IM Rocephin (no stomach upset, etc.). I'm almost afraid to say that as it can take a while for the Lyme bacteria to begin to die off and create symptoms of a herx (about 10-14 days).
Most importantly IV therapy may enable me to gain better functioning in the long run.
After Dr. Lyme and I discussed the risks and benefits in great detail, he felt that it was not an unreasonable risk to take. Dr. ANS agreed. Then, my PCP was on board too. My parents were on board. I'm on board.
How will I feel during treatment?
I have no idea what to expect. As you know, treatment has been very difficult in the past for me. I anticipate that the IV therapy will be more intense and make me even sicker, but I have no idea. For the most part though, I've been more calm about things than I expected I would be. And I've been taking things day by day as much as possible.
I am already weaker and more tired. I have little energy for anything other than what has to get done. Honestly, I'm so grateful I've been able to get up, get dressed, and get a bath every day still! I rest a lot, make Asher keep me company all afternoon, watch a little TV and that's pretty much my day. By the time we go to the doctor for my shot every day I'm pretty wiped. I have very little standing or sitting time and my ANS gets overstimulated very quickly, so I've had to really keep things like that can be overstimulating to a minimum. I've been incredibly conscious about pacing myself and not overdoing.
The best analogy I have for the treatment of Lyme disease is that it is like chemo. And I do not say this lightly. My best friend (who is taking care of her mom with cancer) has said the analogy is perfect. She watches how I feel during treatment and how much sicker I have to get to hopefully feel better. With chemo, of course, the same thing happens. She wrote out a beautiful explanation and comparison of chemo and Lyme treatment, which I hope to share in another blog, as I think it makes what I go through more tangible since more people are familiar with cancer than Lyme.
I knew that after my 'summer vacation' the decision about treatment would boil down to whether or not to pursue IV antibiotics. I did not feel that I had the information necessary to make the decision. I truthfully said to Dr. Lyme that I really needed his feedback and his advice to make this decision as he deals with this every day.
His bottom line was this: Based on the degree to which I am compromised, trying IV antibiotics is a reasonable risk to take. There are no guarantees, but we can hope that this will lead to improvement. He really felt that my body was ready for IVs given the treatment we have done so far. Although we have had to be very judicious about my treatment given my sensitivities we have done a significant amount of treatment so far.
Every Lyme doctor is different, some of them vastly so, in how they approach treatment. I have chosen a doctor who is fairly conservative and does not use much in terms of alternative treatment. At this point, I want this approach.
What really helped me to make the decision to go on IVs was when I asked Dr. Lyme how many patients he put on IV therapy and how often he used it. He said to me that he does not use IV therapy very often and is "very selective" about who he places on such treatment.
For me, this statement was incredibly reassuring. It made me feel comfortable (as comfortable as one can be) with the decision.
As a family we had to ask some really difficult questions of ourselves. All of us still have horrible memories of my PICC line in 2005, yet we knew we could not let fear drive our decision. If I had cancer and needed chemo, would I not do it because I was afraid of getting a port and its possible complications? No. Would I not try IV antibiotics because I was afraid of getting a port? Ultimately the answer was no. With chemo there are no guarantees either. And there are none with this treatment.
But if I don't try, I will always wonder if it might have been my best shot at getting better.
I'm not ready to say that the quality of life I have right now is 'good enough'. Someday I might have to do that. Right now though, there are still treatments left to try and that's where I'm at in my decision making. I keep imagining myself turning 35 next year and feeling like things are beginning anew. I hope I can hold onto that imagery over the next several months!
Blessings,
Emily
Photos: Vase full of gladiolas from Pam and Norm's garden. They are still in my room right now!
