What Kind of Outcome are We Hoping For?

A lot of people have asked me about what I have to expect in terms of treatment and recovery from Lyme. The answer is that I don't really know. Lyme disease affects each person differently, which is one of the reasons that it's so difficult to diagnose and treat. Still, there are similarities and we can point to generalities in trying to chart a course for treatment and recovery. I've blogged before about the course of treatment I've opted for, which is sometimes called combination antibiotic therapy or long-term antibiotic therapy. It's controversial, and according to the CDC it hasn't been proven to make a significant difference. But the doctors that do it (visit the International Lyme and Associated Diseases Society to find out more about the reasoning behind it) report that it works to improve and treat about 80% of patients at various stages of LD. Among the doctors that do it, (referred to as LLMD's or Lyme-literate medical doctors) and the patients that have received it successfully, (and there are lots of them,) everyone is in agreement that the treatment is measured in years, and not in weeks or months. This is hard to wrap your head around, since with modern medicine, we have become accustomed to taking "miracle" pills or procedures that usually make us feel better in a few days or weeks. Treating LD is a marathon and not a sprint.

The reality for me is that when I began this journey with my initial diagnoses in January 2009, the doctor's best estimate at the length of my treatment was between eighteen months to two years. Now over a year into treatment, we are probably looking at another year or two of antibiotic therapy, and continued immune support for the rest of my life. I've had a couple major set backs, but for the most part, my treatment has been going really well. There is no cure for Lyme disease, but it is possible to get it under control. It basically goes into a remission of sorts, or dormant, with the possibility of recurrence under the right conditions (like when your immune system is down because of illness, stress or other factors) -- kind of like chickenpox and shingles. This is the reason that I'll work the rest of my life to actively support my immune system.

For the forseeable future, I'll continue to do exactly what I've been doing. Then after a few more months of improvement, we'll gradually start to cut back on the antibiotics I'm taking, slowly weening me off the high doses I'm currently on. Over time, I'll be able to stop the antibiotics all together, which will be wonderful! Basically, each of these steps will be determined by how I am currently doing, and how many different symptoms I'm dealing with at each appointment. The decision to begin cutting back on the antibiotics will be made when I am either symptom-free or mostly symptom free. Some of the symptoms may be permanent damage from the effects of the infection and the inflammation it causes, rather than being caused by the active infection itself. Obviously, we are hoping to get rid of all of my symptoms, but only time will tell.

I know that antibiotic therapy is controversial, but I feel like it's saved my life, literally. Each day is a challenge, and this is definitely the most difficult thing I've ever done in my life, but it's worth it! I've had a paradigm shift over the past two months as I've begun to love taking my antibiotics. No longer an annoyance, I realize that they are helping me to get my life back, and I look forward to taking them...giving my body and my immune system the boost it needs right now, until it's strong enough to be able to fight on it's own. I'm grateful for the physicians who have been open minded enough to listen to their patients, and to take a risk in the hope of relieving suffering and improving quality of life. I know that this treatment has done both of those things for me, and I am anxious to continue it!

Right now, Bryan and I are taking each day at a time, working on challenges as they come up, and enjoying and making the most of my good days, (which are happening more and more often!) Bryan has a degree in Biology with a minor in Public Health, so he had to take some classes on infectious disease during his studies. He says LD is the craziest disease he's ever heard of. I have to agree with him. There are so many random symptoms and issues that come up at the strangest times. We aren't really too concerned with most of these things, since we now understand what's going on with my body and why. For a long time, we've had to deal with many more questions than answers. I think that we're finally to the point where we're beginning to turn that around. It feels great!

A Quick Follow Up

I'm starting Plaquenil (Hydroxychloroquine) again today. That is my fifth antibiotic pill that I'm now taking twice a day. As soon as we get back to Salt Lake I've got to get to the ophthalmologist, since Plaquenil can cause retinal damage, (it's reversible...so if they start to see damage they take you off the drug.) I saw the ophthalmologist six months ago when I started on it, so he could do a baseline exam of my eyes. I was glad that he was somewhat familiar with Lyme and he told me that Plaq. is one of the strongest antibiotics, the best to be on for Lyme. If I have problems, I will have to go off of it, but hopefully I can hang in there, since I know it helps me.

I've been on the Alinia (Nitazoxanide, Nizonide) for five days now, and I've noticed that the severe joint pain I was having for several weeks over Christmas has almost gone away completely. I have a little stiffness in my hands and fingers, but that's about it. I have noticed that my same abdominal pain (from fall 2008) has been back for the past week, but I only had to take pain meds for it once. I still have the Rx for Lortab the Dr. wrote for me back then when I had the exploratory surgery, so I only use it when I absolutely have to. I'm glad I have it, though...it's nice to have something to make me comfortable when it's really bad. I anticipate that the abdominal pain will probably only last for the next week or two. It seems like getting back on everything has triggered cycles of symptoms that have lasted 2-3 weeks at a time. This is pretty normal to Lyme treatment and is called a Herxheimer reaction. It's basically caused by neurotoxins released as the bacteria die off. When you first start antibiotics (or increase your dose) this happens. When it's bad, I tell myself it's a really good sign -- it means my body is starting to win the war, and the cavalry (antibiotics) are having success!! I will be glad to get everything normalized. Then we just have to figure out how to pay for everything so that I can stay that way. That's the trick. :)

My Current Treatment Plan

For the record, here is a list of my current medications & supplements, and the order I take them in:

AM #1: NO FOOD

Boluoke (enzyme) 2 caps

Nattonkinase (enzyme) 2 caps

Cysteplus (enzyme) 1 cap

Lactoferrin (enzyme) 2 caps

Heparin (blood thinner) .25 ml under tongue

AM #2: (30 minutes later) WITH FOOD, ON FULL STOMACH

Doxycyclene 150mg

Biaxin (Clarithromycin) 500mg

Alinia (Nitazoxanide, Nizonide) 500mg

Placquenil (Hydroxychloroquine) 200mg

Diflucan (Fluconazole) 100mg (monday, tuesday, wednesday only)

Enula (anti-bacterial supplement) 1 dropper full

Quina (anti-bacterial supplement) 1 dropper full

AM #3: (1 hour later)

Theralac (probiotic) 2 caps

Saccro B (probiotic) 2 caps

Vitamin D (5,000 IU) 1 cap

Transfer Factor Multi Immune 2 caps

NT Factor Energy (for fatigue) 2 caps

LymPlus (specific immune support) 2 caps

Omega 3, 6, 9 Oil supplement 1 cap

Multi Vitamin 1 cap

AM #4: (1 hour later)

Pectasol C (toxin binder) 6 caps

PM #1: NO FOOD

Boluoke (enzyme) 2 caps

Nattonkinase (enzyme) 2 caps

Cysteplus (enzyme) 1 cap

Lactoferrin (enzyme) 2 caps

Heparin (blood thinner) .25 ml under tongue

PM #2: (30 minutes later) WITH FOOD, ON FULL STOMACH

Doxycyclene 150mg

Biaxin (Clarithromycin) 500mg

Alinia (Nitazoxanide, Nizonide) 500mg

Placquenil (Hydroxychloroquine) 200mg

Enula (anti-bacterial supplement) 1 dropper full

Quina (anti-bacterial supplement) 1 dropper full

PM #3: (1 hour later)

Theralac (probiotic) 2 caps

Saccro B (probiotic) 2 caps

Transfer Factor Multi Immune 2 caps

NT Factor Energy (for fatigue) 2 caps

LymPlus (specific immune support) 2 caps

Omega 3, 6, 9 Oil supplement 1 cap

PM #4: (1 hour later)

Pectasol C (toxin binder) 6 caps

I know this looks like a crazy amount, but once I'm taking all of them and in a regular routine, they really have helped me so much. Ironically, aside from supporting my immune system, most of the supplements I take are to help support my body and help counteract issues that could be caused by long-term antibiotic use. I have read horror stories of people who get systemic yeast infections, and have terrible side effects from the antibiotics, and I haven't had to deal with any of that. I'm a believer in using these supplements, especially the probiotics. I am also a believer in all the antibiotics. Since starting all of this gradually between January-March 2009, I have seen such a huge improvement in my overall health.

I feel so lucky to have finally figured out what was happening to my body...I felt like I just kept getting worse and worse with no explanations. When I found a dr. that would ask the right questions and order the right blood tests, it was obvious why it had become so difficult for me to function. My body had been brewing six different (and serious) bacterial infections for almost six years! And as for the antibiotics themselves...for me it's obvious that the more I'm on, the better I actually feel. It's pretty amazing. Toward the end of the movie Under Our Skin, there's a quote that I really like: "there is this myth out there that antibiotics are somehow bad for you. I just have to say, if you have a fatal infection, they're certainly not bad for you!" They are giving me my life back, and I am so grateful for them!!

The Latest

I had another doctor's appointment in Seattle on Monday. It went well, but it was discouraging in some ways. I had been feeling really well (more energy, less aches, no numbness in my arm & leg) for almost 5 weeks. Three weeks ago I finished my initial prescription of Mepron, and after three weeks off the medication, many of my symptoms have returned. It was wonderful to have a reprieve and feel better for awhile, but it is really discouraging to have things coming back.

My doctor was very encouraged that I had responded so well to that particular cocktail of antibiotics and other medications. Because she believes we are on the right track, I'm going to be doubling all of my meds, in addition to starting on a blood thinner. The latest research on Lyme shows that 80% of patients that develop chronic Lyme have a coagulation problem that prevents the medications from being fully absorbed. The blood thinners help counteract this. Last time I was in Seattle I had blood work done that confirmed this condition and so hopefully the blood thinners will make a difference as well.

It's great news that we have found the right cocktail, but doubling my doses combined with boosting absorption with blood thinners means that I will probably be a lot sicker for awhile. I was really discouraged by this, but I just have to remember that it's part of the process. I've read a lot of stories of people that respond well to medications after a month or two, but then as soon as they go off of them, the symptoms come back. This is the reasoning behind long-term antibiotic therapy.

I've read testimonial after testimonial of people that had been told by their doctor that after a month or two of treatment, they would just have to live with their remaining symptoms and ailments. In desperation, each of these people sought out the physicians who believed in long-term antibiotic therapy, and after a year or two of treatment (sometimes more) most of these people have made full recoveries. It's controversial, but the idea is that the symptoms are caused by an ongoing, chronic and active infection...and that once you finally eradicate the infection, the symptoms go away.

I'm about five months into treating the infection. While I'm very grateful to know what's going on, and to feel like I'm on the right track in terms of treatment, I have to repeatedly remind myself that it's a long process. I guess I'm a little impatient. I'm trying hard to be positive, and to focus on the good things in my life. When I feel good, I've been trying to make the most of it, which sometimes causes me to try to make up for lost time and I end up over-doing it. There's a balance and I'm trying to find it.

NEXT!!

So much has been happening in my life lately as a direct result of having Lyme. So many people have told me that they think I'm being incredibly optimistic. I guess I just see it as my only choice. Of course I would rather not be dealing with all of this, but the reality is that I AM. I want to be able to get through this in the best way possible, and seeing the good things in my life throughout the process. I'm trying to be open to all the changes and embrace what's going on, so that I can move forward to the NEXT phase of my life once things have calmed down and returned to normal (or something like it.)

I went back to Seattle two weeks ago, and I've gotten new prescriptions. Right now, I'm taking the same antibiotics, (Doxycyclene, Plaquenil & Biaxin) but we added in Cortex (which stimulates the adrenals -- hopefully giving me a temporary boost of energy) and a lovely anti-malarial suspension called Mepron. It's as thick as tempra paint, and bright yellow. Very interesting...my doctor thinks that by adding in the Mepron right now, we can address the two different strains of Babesia, which is probably adding to my extreme fatigue. I'm on pediatric doses of all of the above, because my doctor says I'm "so small," which I interpret to mean SHORT...hahaha. Also, we don't want to overdo the meds and make me sicker than what I have to be!

I had an incredible burst of energy two days ago, where I was up first thing in the morning, created a budget, (my new retirement budget, heehee) cleaned my kitchen, rearranged some things in my living room, packed some boxes and made a pot roast. This was amazing, because most of the time it's all I can do to get up and do one or two quick things around the house in the entire day. I've learned, though, that when I'm feeling good, I need to take advantage of it! I've also learned not to overdo it, because sometimes I pay for all that extra energy over the next two days as my body protests over the exertion my muscles aren't used to.

Speaking of muscles, I'm in the middle of reorganizing my house, (with the help of some wonderful friends) and I'm changing my dining room into my personal gym. I'm hoping to be able to start using my treadmill again, maybe only 3 to 5 minutes a day at first, but something will be better than nothing. I'm also going to try to do some really light weight training, which hopefully will help a little bit with my muscle weakness over time. One of the most frustrating things in all of this, is that I just haven't been able to get things done the way I used to. I'm learning to rely on others for help, and I'm also learning how to let go and let things get done when they get done. It's hard though, because things seem so crazy right now! Patience, patience, patience...

Overall, I'm feeling optimistic about everything, and I've been thinking about specific goals that I want to set over the next three months so that I have something to look forward to as I start feeling better. I want to go visit my friend in South Carolina, and I'm thinking about a couple classes I would love to take if I can figure out how to do it...I would love to take the Wilton Professional Cakes class at their school in Chicago...I know it sounds crazy, but I love doing cakes. The class is only 9 days, so if I really do get feeling better (and my hands get better) in the next couple of months, I might do that before I go back to work.

Before I started SkinScience, I had wanted to get much more involved in the medical side of our industry, and I think in a few months, (when I am feeling better) it might be fun to start back into things by maybe working part time at a medical spa or with a physician. I have worked with a plastic surgeon in the past, and it might be fun to get back into that at some point. We'll see. I'm going to stay focused on future options and possibilities, and take advantage of the next six months as a time to figure all of that out. I feel blessed and grateful for where I am in my life, and that Heavenly Father is taking care of me, and has made allowances for everything that's going on right now.

Antibiotic Update

Ok, I've been taking antibiotics now for 12 days, so here's a quick update. To begin with, I was taking one dose of doxycyclene in the morning. I was pretty sick, with more fatigue and muscle aches than usual, and even the same abdominal pain that I was having last fall. The abdominal pain lasted for 3 or 4 days, but the fatigue and muscle aches were pretty consistent for the first seven days. On the eighth day, I added in a second evening dose of the doxycyclene, so now I'm taking it twice a day. That was last Thursday, March 12th. I noticed an almost immediate (literally the next morning) burst of energy. When I say "burst" I really do mean it. All weekend I felt like I had almost endless amounts of energy, especially in comparison to how I've felt over the last 5 or 6 months. My joint pain, muscle aches and weakness have continued, but it sure is great to have the energy to get up and do things that I need to do.

This Thursday I will add Biaxin twice a day into my routine, and then I will add twice daily Plaquenil into the mix seven days after that. When I've completed this initial "ease-in" period, I'll be taking doxy, Biaxin & Plaquenil twice daily all at the same time, in addition to about 40 other pills (mostly supplements like probiotics, etc.) hourly throughout the day. I'm excited for the continued energy, and at the same time a little nervous about possible side effects. I'm learning to take one day at a time and appreciate the days when I feel good. The last few days have been great for helping me to see that there's light at the end of the tunnel, and that I really can feel good again. I can't even hardly stand to wait!!