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!!

Cure Unknown: Inside the Lyme Epidemic

This is a book that I found on Amazon.com when I was searching for anything I could get my hands on about Lyme. I would highly recommend it for anyone associated with Lyme disease whether directly or indirectly. It is written in a style that makes it feel as though you are reading a good novel, but it's packed with helpful information about the disease and the controversy surrounding it.

Pamela Weintraub is a Lyme survivor herself, and also helped her husband and her two boys battle this difficult disease. Her background as a science writer adds to the intensity and straight-forward presentation. You can purchase it new or used on amazon.com starting at about $10. If you're looking for a good read that will help you understand or empathize with Lyme disease, this is a GREAT book!

Alinia Follow-Up

We found a source for Alinia online for an amazing price...it arrived this morning and I'm anxious to find out how it works for me. The pills are huge and bright yellow, but I suppose that adds to the party mix I'm currently taking. :)

Bryan compared a lot of different websites, but the one that we found to be best was progressiverx.com. They had the best price. We were ecstatic to find what we needed for $208 for a two month supply. We are hoping against hope that this medication will be effective, since it is a much more plausible option for us than Mepron.

You have to have a valid prescription from your doctor, and they require that you scan & fax or email it to them before they send your order, but they were very helpful and we got the order fairly quick. FYI, this was possible for us because my doctor allows for generic substitutions when she writes her Rx's. Basically, I had a prescription plus one refill. We ordered and paid for both the initial Rx and the refill. They sent us the initial Rx amount and will send the refill at the appropriate time.

The package arrived today from a guy in India, (I'm not gonna ask any questions...it's the right medication in the right dose.) If you're reading this and you have Lyme disease, you already understand to what lengths you are willing to go to find things that will work that are still financially available to you...if you don't have Lyme and you think I'm crazy, I'm OK with that. So...I will take my first dose this afternoon and keep you posted on how it all works for me.

New Year's Resolutions

I've been thinking a lot about my life, and since this is the perfect time to set some goals or resolutions, I'm going to take the opportunity to do so. This past year I have tried to adjust to this new phase of life I currently find myself in. Thanks to some wonderful friends and my even-more-wonderful, (boyfriend, then fiance, now husband) Bryan, 2009 was my best year yet, in spite of Lyme disease, believe it or not! One of the reasons for this, was that most of the time we didn't let Lyme interfere with our plans. Of course, there were lots of adjustments, but thanks to patient people and the kindness of others, for the most part I was able to do most things that I would do if I were completely healthy.

The truth is, last year was an amazing year for me in terms of travel and recreation, which is a bit ironic. I think it started out as an unconscious reaction to the circumstances I was thrown into. It was as though I felt the need to really live my life on purpose, since there was so much out of my control. I love being out in nature, and I took as many opportunities to be outdoors as came my way. Bryan and I both love to visit National Parks, and started working on our life goal of visiting all 58 National Parks some day. We made it to 9 of them in 2009. We discovered that I could go anywhere the car could go. And comfortably, too! With my blanket and pillows, in the front seat of our car, we've done auto tours through all 9 of those National Parks, (with the exception of Glacier Bay, when we were on a cruise ship.)

Camping was no big deal, either. We purchased an inexpensive folding lounge chair, (the kind you can lay on,) and when we arrived wherever we were camping, I would lay down as Bryan set up all our stuff. I know...I really am so lucky to have him. For me, it was a relatively simple decision. I could be sick laying at home in my bed, or I could be sick out in nature, enjoying the beauty & solitude that is found in the wild. I choose nature, beauty & solitude, any day of the week!

The other aspect of all this is that we have taken pictures constantly through all of these adventures. We have so many fun pictures, and they have become so important to me as a measure of what I have done with my life this year, in spite of all that I feel like I've lost. I've kept detailed journals and records (I love to blog) of everything, which also helps me feel like I'm making progress. And the great thing about pictures, is that they are generally of highlights, when people are smiling and happy. It's true that as you look back, you remember less the bad stuff and more the good. I'm so glad that we have all these pictures and memories. I don't remember how sick I was in a lot of the pictures we took last year, but I do remember all the things we did together, and the places we visited!

In 2010, my goal is to continue all of this. It's true that money is tight, and getting tighter. Still there are so many places to go and things to see right around us. Lyme can be a really difficult illness because it's not well understood by most people, and it affects almost every area of your life...physical, mental, emotional, spiritual, etc. It makes things really complicated at times. That's why it's so important to live your life on purpose. I've asked myself what do I want to do? Where do I want to go? What do I need to accomplish to feel like this time in my life counts towards something, and I'm not just rotting away in my bed? Some days are more difficult than others, but I know I always have a choice. So I choose to be happy. I choose to see the opportunities that I have, and the things I can do. And I choose to be creative as to how I am going to make the necessary adjustments so I can live my life during this difficult phase and feel happy and satisfied.

Now that I've opined, here are some specific goals:

1) Stay positive and realize that I have plenty of love and support in my life -- even when I am feeling overwhelmed, there are people around me that will help. The last couple months of 2009 were very difficult because I let myself get so discouraged. Things are difficult anyway, so why make them worse? I don't want to do that anymore.

2) Spend as much time outdoors as possible -- picnics, camping, walking around the block, or sitting at the park, (while being aware of ticks, of course!) Being out in nature rechargers my batteries and helps me to feel better about my life. I am going to take the opportunity to enjoy the beauty of this earth that Heavenly Father has blessed us with, and allow that to help heal me.

3) Try not to complain -- this is a hard one for me, since this illness is relentless. But I don't want to be "that girl." You know...the one everyone hates to be around because they have a little rain cloud hovering above wherever they are. I am going to focus on things that I am excited about, grateful for or looking forward to, instead. When I have the urge to express an ache, pain or worry, I'm going to try to talk about something positive instead.

4) Live in the moment -- I want to find the balance between trying to be positive, looking forward to the future and to accepting and even enjoying what I'm able to do right now. In a few years, when this is all behind me and I'm not worried about Lyme disease every day, I don't want to look back and feel like I missed out on two or three years of my life. I feel like I was successful at doing this in 2009, and I want 2010 to be even better!

5) Take care of myself physically, emotionally & spiritually -- this is going to mean setting a few goals that are somewhat personal. But the main things I need to focus on are the specific steps I need to take to be healthy in each of these areas. Things like getting to all my drs. appts; eating right and following my medication schedules to the letter; having a schedule and getting enough sleep; and doing what it takes for me to feel that I am fulfilling my spiritual needs as well. I am very blessed to have a wonderful husband that has been such a support in all of this, and I am grateful.

Well, I think for the most part that sums it up. I'm glad to have this written down so I can check back periodically and ask myself how I'm doing. I know that 2010 will hold some challenges for us, probably even greater than what we anticipate. But I know that it also holds adventures and opportunities that we haven't even thought about yet. Ahhh! I love the new year!