Yolanda Foster Speaks Out About Lyme Disease

Yolanda Foster, wife of Grammy-award winning songwriter and producer David Foster, and cast member of Bravo TV's Real Housewives of Beverly Hills was honored on April 9th with a Star Light Award from the Lyme Research Alliance at their annual Time for Lyme Gala, raising money for Lyme Disease research. Foster was honored with the award because she has spoken openly about her struggles with Lyme, her diagnosis and strenuous treatment regimen. You can read more about the awards gala here.

In her acceptance speech at the gala, Yolanda recounted her experience with Lyme in her usual and refreshing frankness, stating that Lyme Disease led "to some of the darkest days of my life."

You can also watch as Yolanda briefly discusses her journey with Lyme Disease with host Andy Cohen on Bravo TV's Watch What Happens Live. Yolanda has been very public about her fight with Lyme since December 2012. You can read more about her and other celebrities in a previous post, Celebrities Get Lyme Disease, Too.

1st Treatment at the West Clinic!

My first day of treatment at the West Clinic in Pocatello, Idaho began early. We live a little less than two hours away, so my husband and I got up early (and he took the day off from his Veterinary Medicine studies) so that we could make our 8:30am appointment on time. I was nervous, excited and a little apprehensive all rolled into one as we drove the 90 some miles to the clinic. During the drive, we talked about our five year trek since discovering I have Lyme Disease, how it has affected us, how we have learned and grown from the experience, and how we continue to be frustrated with the ignorance (and on the part of some medical professionals, arrogance,) that still surrounds this difficult illness. It has been quite the journey. We were both very hopeful at the prospect of trying a new approach to healing.

We arrived at the West Clinic just before 8:30am, along with 8 or 10 other patients, and walked into the busy waiting area by the front desk. It felt clean and professional, with friendly staff. The girl at the front desk asked for my name and told us it would be just a few moments while having me sign in. I had already filled out my new patient paperwork the week before when I received a packet in the mail outlining many of the various treatments offered and other helpful information, along with all my new patient forms. We also thought it was a nice touch that the packet included a map to the clinic and driving directions from Salt Lake City (the general route we would be driving.) It also included a brochure from a local hotel that has special rates for patients of the clinic.

This begun a busy day of meeting staff, including Alicia, the clinic's Lyme coordinator, (that's right. They have a Lyme coordinator,) whose daughter suffered with Lyme disease from age 3 until she was finally diagnosed and treated at the clinic at the age of 15. I could be wrong, but as I understand it, Alicia's daughter Sarah was the first patient treated for Lyme at the West Clinic. We had heard her story and were anxious for an update. According to her mom, Sarah has been symptom free for the last 3 and a half years and comes to the clinic once or twice a year for maintenance treatments. She now swims, bikes, hikes and enjoys a wonderful and normal life. You can learn more about Sarah's story by watching her testimonial: http://www.youtube.com/watch?v=dIkbzHMRN1s. Also, this news Story on West Clinic: http://www.youtube.com/watch?v=oTa_9SW3Nvk

After meeting with Alicia and discussing my case, including all the ups and downs of dealing with Lyme, she prepared a slide with a few drops of my blood to be reviewed under the clinic's dark field microscope. This was by far one of the coolest parts of the day. We were able to see everything she could see on the large monitor mounted on the wall. At the West Clinic they don't use the Western Blot, PCR or ELISA to determine Lyme. They can perform their treatment based on clinical diagnosis with your history, and they use the dark field microscope to evaluate what is actually going on - in real time - in your blood. It was really amazing.

 

Right off the bat, she said she could see that there was lots of "stacking" going on -- where the red blood cells were sticking to each other, clumped together. She explained that this kept them from getting the oxygen they are supposed to deliver around the body where it's supposed to go, which will cause extreme fatigue, and shortness of breath.

In the slide she showed us of healthy blood cells, they are supposed to be all "floating free" and mine obviously aren't. We were also able to see little parasites actually wiggling around in my blood cells, most likely the babesia strains that I tested positive for back in 2009. Babesia is an infection of the red blood cells and can cause lots of problems. You can read more about the two strains of Babesia I have, Babesia Microti and Babesia Duncani, in these previous posts.

 

After several more tests, we met with "Dr. J" as everyone calls him - Dr. Jason West, the doctor that heads up the West Clinic. He was very sincere and took time to explain his philosophy and approach to healing. He explained that this was a totally different approach than the one we had previously tried, but that in his experience, it's extremely effective. Half of the clinic's patient base are Lyme patients from all over the US and the world, including places as far away as Australia. Dr. J explained that while he could identify spirochete cysts in my blood, as well as parasites in my blood cells, he didn't differentiate or distinguish between the bugs. This treatment was effective for all of them, unlike anti-biotics, so he wasn't really concerned with the specific types of bugs, just that they were there.

This is a good time for me to mention that, if you suffer from Lyme Disease, you probably know how expensive and difficult, (not to mention INACCURATE) the testing process is. This particular philosophy opens the door to so many very ill patients who have been denied care because they can't PASS the test to prove they've got Lyme. A test that the CDC admits is inaccurate up to 60% of the time! I have all my paperwork and test results from four years ago, actual documentation of my CDC positive Western Blot. I was one of the lucky ones that got a positive result. But those old test results didn't matter here: it's a shift in focus away from the specific bugs. The focus of this treatment is to change the environment, (your body) so that it's less favorable to the bugs, and strong enough to fight them off on it's own. I know...if you've got Lyme and you're reading this, your probably very skeptical. I promise you that we were, too.  But after talking to so many people that have had success with this treatment, we felt like there's got to be something to it. The doctor talked to us for quite awhile, explaining everything, and took time to find out if we had any further questions when he was done.

Once we had met with Dr. J and gone over my tests and symptoms, they took me into a quiet room and got me set up for my treatment. Today's treatment would be IV Vitamin C, (to boost immune function, among other things,) Hydrogen Peroxide (to oxygenate the blood, among other things) and Hydrachloric Acid (to clean out the lymph system and kill the bacteria, among other things,) in addition to a session with the Rife Machine, which uses electrical pulses to kill bacteria. Dr. J said they were giving me a quarter of the dose we would work up to, but that it was better to ease in slowly. Got it. Once I was hooked up to everything, it was time to just sit back and relax.

When the treatment was over we headed home. About an hour into our drive, we stopped to get gas, and I got out to use the restroom. After a few steps, I realized that I felt very woozy, and had the familiar "floating" feeling that I had previously experienced with a herxheimer or herx reaction when I started treatment back in 2009. This reaction is literally caused by the "die-off" of the bacteria, because spirochetes release neuro-toxins when they die. When a bunch of them die all at the same time, the body becomes flooded with these toxins, and they can make you very sick. Symptoms of a herx can include sleepiness, nausea, headache, muscle aches and generally feeling terrible. They can also happen in the form of a worsening of all the Lyme symptoms you've already been experiencing. Many people describe it as the worst hangover you've ever had. I don't drink, so I wouldn't really know what a hangover is like, but they don't sound fun. :)

When I got back into the car, I told my husband how I was feeling. We were both actually happy, since this reaction meant that the treatment had been effective in killing bacteria. Once we got home, I crawled into my bed and tried to sleep it off. I was pretty uncomfortable that night, but woke up the next morning feeling a little bit better - still nauseated, sleepy, etc., but less miserable than the night before. My sweet husband had stocked our bedroom with soda crackers, my favorite Vernor's ginger ale, ginger candies and lemon water, all of which have helped in the past with my herx reactions. Whenever I'm experiencing a herx, I try to lay in my bed as still as possible, and let my body heal, reminding myself of everything that is going on inside me. During a herx, lying as still as possible is about all you want to do, since moving causes the nausea, dizziness and everything else to be worse.

Friday (the second day post-treatment) I woke up feeling about the same, but after a morning nap, I got up with energy, strength and feeling better than I have in months. I could do laundry, dishes, make my bed and clean my house for the first time in months! I got to play with my kids, change their diapers and carry them up our stairs without being totally out of breath. We were so happy! I almost expected that on Saturday I would be back in bed, just because I had done so much on Friday. The last time I was on treatment, I would have a good day and totally over-do it...causing me to spend the next several days out of commission. But Saturday I woke up feeling great, and after a full day of cleaning, organizing and playing with my kids, we all went out to dinner AND shopping, (something I haven't been up to doing in several months.) This morning, (Sunday) I attended all three hours of our church services, another thing I haven't been able to do in several months. By this afternoon, however, I started to feel like I was dragging again, and could feel myself getting out of breath on exertion. I'm really happy that I will be going back for my second treatment tomorrow. Obviously, it's too soon to really know how it will all work out, but I sure do feel a lot more excited about my future!

I will continue to document our journey through this treatment, since it's alternative and totally different than anything I've heard or read about Lyme over the last five years. Still, it makes sense to me, and my husband, who is a bit of a brainiac and skeptical of most things. Five years ago I wouldn't have been open to alternative therapy, but after everything that we've been through, I'm ready to try something different. Antibiotic therapy was difficult and extremely expensive, not to mention being hard on my body...only to end up back at square one two years after wrapping it up. If you or a loved one is struggling with chronic lyme disease, I would strongly encourage you to do your own research on this treatment. Be open-minded enough to look into it. I have provided a few of the links that we found as we researched it. For more information on Dr. Jason West, The West Clinic, and this alternative therapy, visit:

The West Clinic, Pocatello, Idaho: http://www.westcliniconline.com/
About Dr. Jason West/West Clinic: http://www.idchiro.org/dr-jason-west
Interview with Dr. Jason West: http://www.seasonsonthefly.com/blog/?page_id=89
Intravenous Hydrochloric Acid Therapy: http://www.tldp.com/issue/11_00/martin.htm

Babesia and Lyme Disease

When I was first diagnosed with Lyme Disease, I also tested positive for six other co-infections commonly carried by the same ticks that spread Lyme. Co-infections are separate, potentially serious infections that can be parasitic, bacterial, viral, etc., and are often transmitted to you via the same bite that gave you Lyme Disease. Co-infections make Lyme even more complicated and difficult to treat, because many times they can be responsible for causing bigger problems in the body, or exacerbating the problems already caused by Lyme Disease. Additionally, because it's working so hard dealing with all these different infections, the immune system can become overwhelmed and unable to effectively protect the body from any of them. When I first started treatment, my doctor explained that sometimes it's necessary to identify and treat your co-infections before you can have success in treating Lyme Disease.

In my case, we were concerned specifically with my worst symptom, severe and debilitating fatigue. When I use the word fatigue, I'm not talking about being tired, although you do experience sleepiness as well, because of the insomnia and other problems caused by Lyme. But debilitating fatigue has little to do with being tired. When I use the words debilitating fatigue, I'm talking about not being able to function. It's a constant feeling of having lead weights attached to your arms and legs, making it extremely difficult to move. When it was discovered that I had two different strains of Babesia, my doctor knew that while Lyme Disease does in fact cause debilitating fatigue all on its own, the level of fatigue I was experiencing was probably made worse by the Babesia infection. So we worked to clear up the Babesia.

What is Babesia?

 Many people have never heard of Babesia, but it is a relatively common tick borne infection in the world of Lyme Disease. Babesiosis is a parasitic protozoan infection. Babesia Microti is the most common species, and most cases worldwide are reported in the United States. Simply put, Babesia is an infection of the red blood cells. Upon infection, these little invaders cause lysis or rupture of the host's red blood cells. Red blood cells are essential, because they are responsible for transporting oxygen & other nutrients throughout the body. As the infection takes hold, the little parasites reproduce as quickly as possible and as red blood cell depletion increases, they actually begin to deprive their host of oxygen -- which causes extreme, debilitating fatigue.

Transmission of Babesia

While most cases of Babesia are caused by infected tick bites, there are documented cases of transmission via blood transfusion. I was surprised to read that it is actually THE most common disease transmitted via blood transfusion. By the way, this is a HUGE problem because so many infected people out there have no idea they have it...and may continue to do their civic duty by donating blood. So far, blood banks are not screening for it, although there are some experimental screening tests being used. Blood banks also don't screen for Lyme Disease.

In my opinion, it goes without saying: if you have been diagnosed with Lyme Disease and/or any of it's co-infections, you have a moral and ethical obligation NOT to donate blood, plasma or organs. Additionally, I was also told by my doctor that I should remove the "DONOR" designation from my driver's license. If you have Chronic Lyme Disease, where the spirochetes have had the opportunity to make themselves comfortable in all areas of your body - including all your organs - you could pass it on to the recipient of any donation.

Lifecycle of Babesia

Symptoms of Babesia

The symptoms of Babesia seem to be as generalized and vague as those of Lyme Disease. They are listed as flu-like symptoms, including fatigue, fever, malaise, chills & sweating. Most LLMD's describe Babesia as being a "Malaria-like" infection, and in fact, the two look so alike under the microscope that it is said to take a well-trained eye to recognize the differences and diagnose correctly. At my first visit with my LLMD, she informed me that the strange fevers in the evening and night sweats I reported were probably a result of Babesia...that was a revelation to me, since I had been to several doctors about those specific symptoms and each had looked at me like I was crazy. In the early stages of my illness, over the first year or two, I would frequently have low-grade fevers that would come on in the evening and last only a couple of hours. It generally happened 3 or 4 times a week. I also had frequent night sweats, where I would wake to my bedding & clothing being drenched. When my Lyme doctor was not only NOT surprised to hear of these strange symptoms, but also very familiar with them, I almost started to cry right there in her office. I was so relieved to finally have an explanation for so many of the strange and life-altering symptoms I'd been experiencing. The destruction of red blood cells by the Babesia is also a very easy explanation as to why, whenever I've had blood work done over the past 10 years, I'm always told I'm severely anemic. Not surprisingly, none of the doctors that rattled back to me all my "normal" blood tests ever thought there was a need to look into what might be causing the severe anemia.

Red Spots of Babesia

Another strange but seemingly common symptom or side effect reported by those diagnosed with Babesia are tiny red spots or dots called petechiae. They seem to show up mainly on the trunk and thighs. Many report first seeing them while on treatment, and some believe that it is actually a herx reaction to treatment. There doesn't seem to be much information into how or why these little dots appear, but they do seem to be very common among those undergoing treatment for Chronic Lyme Disease and Babesia. This certainly has been my experience. It's important to note, that lots of people have a few of these little spots here and there, and that doesn't mean you've got Babesia. I had a few before all of this started. But in my experience, at least, these spots showed up in droves all over my chest, belly and back while I was on treatment for Lyme & Babesia. Examples are pictured below.

Babesia is a complex illness in and of itself, and as a co-infection, only adds difficulty to the puzzle that makes up Chronic Lyme Disease. Current treatment recommendations include oral and IV clindamycin and oral quinine. My doctor prescribed a combination of medications for the duration of my treatment, and I found much relief from my Babesia symptoms while I was on Mepron, (Atovaquone) an anti-malarial drug. It was magical for me, however it was extremely expensive, so we also tried Alinia as a less-expensive alternative, and I had pretty good results with that as well. You can read more about my experience here. If you have not been tested for co-infections, but have experienced some or all of the symptoms listed above, it's worth a discussion with your LLMD. If you're going to an LLMD, chances are they've already discussed it with you!

For additional information on Babesia, visit http://aldf.com/Babesiosis.shtml

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. :)

Keep On Keepin' On

Just a quick health update: I'm still taking all my meds for my treatment. The biggest thing I've noticed in the last couple of months is that my hair is falling out! Luckily, I've always had tons of hair, but I was teasing Bryan the other day that we both have receding hair lines. This clump of hair came out as I washed and styled my hair the other day. It's a little scary that this amount has been the norm lately. It seems like it might be a result of the heparin I've been taking, but I'm not sure. It just seems to correlate.

I still take medications eight different times throughout the day, and two of those doses are antibiotics. Those always make me sick with severe nausea, but usually only for about an hour after I've taken them. Then it passes and usually I'm fine. I've also found that eating a large, substantial meal, (ie., rice, pasta, protein, etc.) and making sure that my stomach is full prior to taking the antibiotics does help. Other than that, soda crackers (saltines) have become my best friends. I've also learned from sad experience that if I ignore the nausea for too long before doing something about it, (ie., eating crackers) I will end up vomiting up all the food I've eaten and all the meds I've taken over the prior three hours. I try to avoid this at all costs for obvious reasons, (the price of the medications among them.)

We're looking into various options for continuing my treatment, since it's extremely expensive, and I haven't been working for quite awhile now. Still, Heavenly Father has continued to provide for us and open doors whenever we feel like we're at a dead end. I'm still having problems with severe fatigue, swelling & joint pain on my bad days, but all in all I am feeling pretty good and looking forward to the future!

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.

A Not-So-Quick Update

I know this blog is probably not very interesting to most of you, but I think it's really important for me to write about all the different things I'm experiencing throughout this process, since it's so easy to forget what's been happening from one week to the next. Even just reading back over the last few posts, it's interesting to be able to recognize progress.

This week I've realized that this stuff has really affected my ability to carry on conversations...yes, I know...I'm really good at talking. If we're talking on the phone you may think I'm off my rocker in saying that, since I can still talk. :) It's not so much the talking, but the content that's a problem right now. I've always been a great conversationalist, but it's a lot harder for me right now to talk about things much beyond the days events or what might be happening tomorrow. It's hard for me to put together my thoughts and really articulate what I'm thinking. Most of you have probably noticed at one point or another that I also have difficulty finishing sentences. These are all symptoms of Lyme, and the doctor told me that the treatments would affect "higher brain function" even more for awhile, but I was hoping that I wouldn't necessarily have to deal with that.

I have also noticed that I have a hard time with word retrieval, and I get confused with what day it is, or if I had a conversation with someone earlier this morning, or last Wednesday. It's all a little disconcerting, but easier to handle since I know why it's happening, and that it's temporary. All of this is happening because the infection is in my brain, (which is why I've had balance issues for the last couple years) and as the antibiotics and my immune system kill the bugs, the whole process causes inflammation. The inflammation causes some messages to misfire, so once in awhile, information is not available when you need it.

When I was in Seattle this last time, I tried to use my ATM card, (it's for a checking account I've had for over 10 years, and I've never had a problem remembering my PIN) and for the life of me, I could not remember my PIN. I tried four different times to put it in, and couldn't get it right. The information was just not there. There was a long line of people behind me, and I was embarrassed by that and flustered about the whole situation. Luckily, I always bring an emergency credit card with me when I travel, so I just used that. That incident was really upsetting to me, but those kinds of moments are getting easier to deal with because I just tell myself that it's necessary to getting better.

In happier news, I think the Mepron and the Cortef are really helping me. I started on my second bottle of Mepron yesterday, and I have noticed substantial improvement in my energy over the last week. I have still been tired, and I still need to rest frequently, but I've been able to get so much more done compared to the last several months. So, I've taken the Mepron for about 22 or 23 days now. The doctor thought that the 2 strains of Babesia (a co-infection to Lyme that's similar to Malaria) that I have are probably contributing to the extreme fatigue that I've had, and that treating that infection and getting it out of the way would help. I think she was right, and I'm really excited about the improvement.

The rest of my antibiotics and supplements are going well, and I seem to be on the right track. I feel really blessed, because compared with others I have heard from and read about that are in my same situation, I think I'm tolerating everything really well, and that I'm actually pretty healthy given the circumstances. I had a fairly busy afternoon and evening yesterday, and I was expecting that I would probably be in bed all day today recovering. I woke up this morning feeling really good, so I'm going to try to get a few things done around the house. I have to take it easy though, so I have enough energy to get to church tomorrow. Sometimes when I feel good I have a tendency to overdo it.

A friend of mine came to visit last week and told me about another friend she has that was diagnosed with Lyme disease awhile ago. She describes it as knowing that you have a jar with a set number of marbles in it each day. The marbles represent your energy. If you want to use the marbles doing dishes and vacuuming the house, that's fine. If you want to save them so you can BBQ with friends, that's fine, too, but you probably aren't going to have enough to do both. The point is, everyday, you have to decide what you want to use your marbles for, since there is a limited supply. I thought that was a really great analogy. I am learning to pace myself for now, and eventually, when I get feeling better, I will have so much more appreciation for the gift of health and strength. You hear that phrase a lot, and it seems kind of trite most of the time when we use it. It has entirely new meaning to me because of all of this!

Oh, one more thing. I was watching Mystery Diagnosis this week on TLC. There was a guy on there that was having all these bizarre symptoms, and I was like...it sounds like he has Lyme. Well, I kept watching, and he totally did have it! It was pretty interesting. At the end they had a physician on talking about it a little bit, then they did a follow up with him. After antibiotic therapy for a year and a half, he was back to normal. Three years after his ordeal started, he said he was back to 100%. It was really encouraging to see that! I got my treadmill set up this week, and my goal for this next week is to walk everyday -- even if it's only 3 to 5 minutes. I think it will make me feel better knowing that I'm doing something. All-in-all, this has been a great week for me, and I'm very optimistic about the future.

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.

Lyme Symptoms

Because Lyme is a bacterial infection caused by a spirochete, or spiral shaped bacteria, it is able to essentially drill through tissue, allowing it to spread virtually anywhere in the body. Because of this, Lyme can cause all kinds of different symptoms involving all the body systems. This can add to the confusion and delay in diagnosis, because most physicians aren't able to connect the dots of all these seemingly unrelated symptoms.

Most of these symptoms start out mild, and usually "wax and wane" meaning they come and go, sometimes completely resolving for a time, only to return with increased intensity sometimes months or years later. My symptoms followed this same pattern, usually in a 3-4 month cycle. Each time they came back, they got a little worse, with new ones added each time. Adding to the mystery, some would come and go frequently, but others would crop up for a month or two, then completely go away, and never return. For almost three months in early 2008, I got sick anytime I ate anything. There was no obvious reason for this, and after about 90 days, this peculiar symptom went away and I've never had it since. 

It really does make you second guess yourself and what you're feeling, and it's easier to understand why some doctors react skeptically when you're explaining all these bizarre symptoms.

Over the last five years some of my symptoms have included:

extreme, debilitating fatigue

muscle aches & weakness

headaches, sometimes lasting 4-6 weeks

unexplained low-grade fevers

night sweats

joint pain and swelling

stiff neck

dizzy spells

swollen glands

neck & right shoulder “locked up”

frequent sore throats

severe stabbing abdominal pain (I've had appendicitis, it's similar)

difficulty focusing

inability to complete sentences

heart palpitations

nausea

loss of appetite

stomach problems

short term memory loss

numbness and tingling in limbs (particularly my right arm & leg)

vertigo (this lasted for almost two months)

anxiety (especially in social situations, never before a problem for me) 

frequent infections & low immune function

general feeling of being unwell

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!!

5 Days In...

For those of you that might be wondering about it, when I went to see the doctor and was diagnosed with late stage Lyme, she told me, "You've got a really long road ahead of you." Hence, the name of my blog. :)

Today is my fifth day of treatment, and I'm doing ok. I'm taking about 30 different things, at eight different times throughout the day. Surprisingly enough, I'm getting used to it, and it hasn't been as bad as I'd anticipated.

I've also been officially off sugar, dairy and gluten (which includes wheat, oats & barley)  for almost a full week. I'm amazed about this, because I'll be honest, when I first found out that I had to eliminate these things completely, I was really discouraged. I think it would be difficult for most people to eliminate one of the three completely from their daily diets...with all three it's like, what do I eat?? With the help of some resourceful friends, and a thorough search of WalMart and Costco, I've come up with some good options for now. Obviously I can have all the fruits and veggies I want. And the other stuff will become more familiar and easier with time.

I have noticed significant improvement in the swelling in my hands, and my joint pain has improved substantially, it's still there, but I don't have to hobble around the house right now. I've also got a lot more energy. I feel alert and awake, which is unusual for me in the past few months. The last two days I've been able to wake up without an alarm clock at 7am. That hasn't happened in several years!

Anyway, I'm not sure if these things have to do with the diet, supplements & medications I've begun, or if it's just part of the natural cycles that have been happening all along. For the last several months I've noticed that I will have 2 or 3 "good" days -- days where I have more energy and less pain than others -- and then I will have 4 or 5 "bad" days -- these are the days where it's hard to get out of bed. It doesn't really matter...I've enjoyed having the energy and the slight reprieve from the pain. Whoohoo!

I scheduled my next appointment yesterday also. I'll see the doctor again on Monday, March 2nd. That's when I'll start antibiotic therapy. I'm not really looking forward to that, since I haven't heard fun things about it. But at the same time I'm told the antibiotics are what really help, and after you've made it through the first few months, you feel significantly better.