A Journey To Health

My New Best Friend

2017-02-21T18:53:00.000-05:00

Anyone who has experienced "Lyme Brain," the common name for cognitive disorders caused by Lyme disease, will understand how even simple tasks sometimes become difficult to handle. You walk into a room to do something and forget what you were doing. You run around the house looking for your glasses when they're already on your face. Get sidetracked and never get back to the original task. While many healthy people will joke that they do these things all the time too, for those with Lyme Brain, it's more serious and can easily limit your daily activities. You end up lost while driving, assuming you trust yourself enough to drive in the first place. You leave a lit candle unattended, or a space heater on when leaving the house.

One of the biggest challenges for me has been cooking. I wasn't a great cook before Lyme took over my life, and the Lyme Brain has made it a near-impossible task. Water boils over and leaves a mess on the stove top. I forget to turn on the crock pot, or better yet, turn it on but never plug it in. I forget ingredients or read the measurements wrong. Forget to put a lid on the spaghetti sauce. Leave something in the oven until I smell it burning. I've ruined frying pans with burned-on food. It's somewhat of a running joke in my house, although even my kids know not to trust me in the kitchen.

In my quest to make my life better, I've at least found one thing that helps: my new Instant Pot. It's a pressure cooker that also functions as a crock pot, and it's helped my family out in quite a few ways in the few short weeks we've had it.

For starters, since my husband does the majority of the cooking after working all day, the Instant Pot is great for throwing a meal together in less time than it would normally take to cook. Instead of having convenience foods because we're short on time, we can have a full meal.

But not only that, it's something even I can work with. Assuming I get the ingredients correct, since it's digital you can't set it without first plugging it in. Makes it more difficult for me to forget! You can cook chicken and ground beef from frozen, so when I forget to take them out of the freezer the night before we can still have a decent dinner without much fuss.

You can also convert existing slow cooker recipes to the Instant Pot, and it'll taste like it's been cooking all day long in a fraction of the time.

As ridiculous as it sounds, my favorite thing to make in the Instant Pot so far is hard boiled eggs. Why not just boil them on the stove top? Well, there's my bad habit of boiling things over or forgetting about them. Besides, I never got the timing right on eggs, and they'd end up with that grayish-green color to the yolks. And plenty of times I would end up with cracked eggs leaking out during boiling. With my beloved Instant Pot, I set it and forget it. Not only is it super simple, but the eggs practically peel themselves. No more picking tiny pieces of shell off or peeling off half the egg white in the process. When my kids want egg salad for lunch, they're mixing in the mayo about 15 minutes after starting the pot.

I'm looking forward to all the new recipes we'll be trying in our Instant Pot. If you have a favorite, please share it in the comments. Maybe I'll post a few of my own on the blog.

An old standard for coughs

2016-10-07T17:35:00.000-04:00

Many people probably remember your parents slathering Vicks VapoRub on your chest when you were a kid and had a cold. It was supposed to help open your airways so you could breathe, and also help a cough. I remember the product but don't remember it really doing much.

Now that I'm older and much more interested in finding alternative solutions to ingesting tons of pharmaceuticals, I'm willing to give just about anything that goes outside the body a try, within reason, of course. A while back I stumbled onto some advice for treating a cough that I thought was a little crazy.

Vicks VapoRub. On your feet.

Seems strange, right? Well, when my kids brought home a lovely little cold from school a few weeks ago, I started to get desperate. Like most Lymies, what is minor for them (about 3 days of stuffy noses and congestion) is a major setback for me. I'm now into my 3rd week with this cold, and it varies from minor nuisance to fevers and coughing that keep me awake. Even the standard OTC meds weren't doing much to help the cough, and we all know how important sleep is (you can find my post on sleep here). If it's disrupted when you're already under the weather, you don't have much chance of getting better.

One night while I was getting ready to cough my head off (all the coughing was actually causing migraines!) before going to bed, I suddenly remembered that crazy advice about the VapoRub. So I did it. I put VapoRub on my feet and then put on socks.

You know what? I coughed a whole lot less than I had the previous night.

I'm not saying this is any kind of miracle, but it certainly helped. I still have that nasty little cold, and I'm still coughing. But at least the VapoRub is helping me sleep better while I try to get over the rest of it. I'm guessing it has something to do with being absorbed through the feet. I don't really know. I'm not even going to question it. If it works, it works!

And just for the record, I did put it on my chest like the directions say. It was definitely more effective on my feet.

Sleep Solutions

2016-06-10T12:05:00.000-04:00

Sleep is such an important part of good health. Everybody knows you're supposed to get 8 hours of sleep a night, but do you know why? There are several things your body does while you're sleeping that contribute to good health, and they occur during different parts of the sleep cycle. If you're not getting the full 8 hours of sleep or your sleep is interrupted, then you're not getting all the benefits you should be getting from your sleep.

The REM state makes up about 25% of your sleep. It occurs about 90 minutes after falling asleep, and recurs about every 90 minutes, getting longer later in the night. During REM, energy is provided to your brain and body. If you wake up frequently throughout the night or sleep in short spurts, you're missing out on gaining this energy because you don't enter the REM state often or long enough.

NREM makes up the other 75% of sleep and is comprised of 4 stages. Stages 3 and 4 are the most restorative sleep where you are most relaxed, but you have to get through stages 1 and 2 first. Again, interrupted sleep causes a problem. Tissue growth and repair occurs during stages 3 and 4. For Lymies, missing out on this repair stage makes an already big problem in our bodies even bigger.

My doctor diagnosed lack of deep sleep as one of my issues a while ago based on blood test results. He initially put me on Ambien, but I didn't like that as a long-term solution so I've been using more natural solutions to help me sleep better. Here are some suggestions you can try:

Try to go to sleep and get up at the same time every day. This helps set your body's internal clock.
Make sure you sleep in a dark room and keep the lights low if you have to get up during the night.
Use relaxation techniques like deep breathing or muscle relaxation. The old advice of counting sheep actually has merit. I sometimes use a variation of this exercise combined with breathing. I keep a mental picture of a bunch of balloons in my head. On every inhale, I imagine pulling a balloon from the bunch, and on every exhale I imagine the balloon floating away and I count it. If you lose track of what number you're up to, don't fret. Just start back with the first number that comes into your head. The idea is not to see how high you can count but to let your mind relax with the image and counting, blocking out all those other thoughts that keep you awake at night.
Melatonin - Many people report being able to fall asleep better while taking melatonin. It helps regulate the sleep cycle and is a calming agent. According to WebMD, melatonin has many other uses as well. I have tried it in the past, but it was never enough to make a difference in my sleep, though perhaps I will add it again to see if I can get any of the other benefits.
Valerian Root - Valerian root is calming and has been reported to reduce the amount of time it takes to fall asleep. I currently use valerian root and have found some benefit to it.
Revitalizing Sleep Formula - This is a product I have used off and on for several years, and I do believe it helps me not only fall asleep faster, but also fall back to sleep if I wake up during the night. I also notice my dreams are more vivid when I take this, indicating I'm reaching stages 3 and 4 of NREM. It includes valerian root along with other natural ingredients, so check to make sure you are not taking too much of any one ingredient if you try multiple remedies.

As always, talk to your doctor about any changes you plan to make. My suggestions are only to provide a personal experience and your situation may vary.

Hopefully, with the right amount of rest and relaxation, your body can function as it was meant to. I'm keeping my fingers crossed that my recent changes in sleep aids will help me along on my journey to health.

Strep Throat Natural Remedies

2016-04-20T10:01:00.000-04:00

I'm fairly sure strep throat is something everyone can relate to. We've all had it at one time or another in our lives. And everyone rushes to the doctor for the rapid strep test (and maybe a regular test if the rapid test is negative) and then a bunch of antibiotics. Like most illnesses, the key is how your immune system handles it, and strep throat is no different. For us Lymies, strep throat, or the side effects of it, can linger around for quite some time because our immune systems aren't capable of fighting them off.

The other issue for Lymies is something that most people take for granted: to antibiotic or not to antibiotic, depending on what treatment we're currently on. Sometimes we're already on antibiotics, but strep gets through anyway and we need to add an extra med. But sometimes we're in a rest period, where we need to let our bodies heal from all the antibiotics we've previously taken, and adding a new med during this time isn't really the best option. Of course, sometimes we have to do it anyway, because what's worse than strep throat? Strep throat that's untreated.

Up until now, like most people, I thought antibiotics was my only choice when I came down with strep throat about a month ago. As soon as I saw those tell-tale white spots on my throat, along with the other symptoms, I rushed to the phone to call my doctor.

But on the way to the phone, I spotted my Cowden products, and I took a second to think things over. There was a reason my doctor didn't want me on antibiotics right now. And I had no idea if Cowden would get messed up if I threw a bunch of antibiotics into the mix. So I thought, "I can give it a little while. I'll do some research first." I figured there had to be a way to get rid of strep throat naturally - something I'd never really thought about before.

What I came up with was that there are quite a few natural methods to get rid of strep. I'm not going to list them all because it would take forever, but I'll just tell you what I tried and why.

Essentially, I used Organic Raw Apple Cider Vinegar and Oil of Oregano. My reason for selecting these two was that I'd already read up on their benefits for other reasons (Lyme, candida, general wellness, etc.) and knew they worked for certain maladies. As it is, I've been taking oil of oregano regularly for a while, and when I feel a cold or something coming on, I up my dose and it gets rid of the illness quickly.

So what did I do? I increased my dose of oil of oregano and started taking apple cider vinegar. I had already been taking oil of oregano twice a day, so I went to three times a day. I gargled with some apple cider vinegar mixed into warm water, and I also drank some apple cider vinegar mixed in water twice a day. In addition, I occasionally swabbed some oil of oregano directly on the white spots on my tonsil (yes, it only infected one, and I think starting this regimen quickly kept it from ever getting to the other tonsil) using a Q-tip.

The results? Pretty amazing. The strep still had to run its course. The white spots did linger for a little more than a week, but they got smaller each day. The sore throat was manageable. It never got out of hand. I did spike a fever about four days after starting the treatment, but a fever is a way of your body telling you it's fighting something off. I took that as a good sign that my immune system was working against the strep. I kept up the oil of oregano and apple cider vinegar after the symptoms and spots disappeared, just to be safe.

In the end, I'm pretty confident that I did have strep even though it was never confirmed by a doctor, and that I beat it without antibiotics.

Better than Baseline

2016-03-26T13:07:00.002-04:00

Better or worse than baseline is a term many Lymies use to describe how they're feeling. It's difficult for most people to understand that a "good day" for someone with Chronic Lyme is probably worse than most people's bad days, so comparing it to our "baseline" is a better way to describe it. So if I feel "awful" on a regular basis, I call "awful" my "baseline" and then if I feel a little better than "awful" I can say my day is "better than baseline." To a Lymie, "better than baseline" is a nice change.

I'm happy to report that I've had a few "better than baseline" days recently. They still haven't been great, but slightly better than what I'm used to. My pain has been not as bad and I can move around a little easier. My energy level is up a bit, although I'm still horribly fatigued. So when I'm up, I can do more than usual, but I still need to nap as much as normal.

It's only been a few days like this, but the fact that I noticed them is what's important. I'm trying not to overdo it when I do have the extra energy so I don't ruin my chances of having more "better than baseline" days.

I'm currently one month in to the Cowden Protocol, and I would guess that's what I can attribute these positives to. I have a long way to go in the program, so I'll keep taking it day by day. I hope to see continued improvement, even if it's in tiny increments. I'll take any little bit I can get!

For anyone interested in starting Cowden, you can receive 25% off your first order from Nutramedix by using this link and discount code TAF16. The code will only work with the link supplied.

Cowden Protocol

2016-03-19T14:08:00.000-04:00

If you're a Lymie like me, you've probably heard plenty about the Cowden Protocol, but for those who don't know, here's a bit of a summary. The Cowden Protocol is an herbal treatment for Lyme disease and many of its co-infections (the lesser-known infections that can also be transmitted, many in less time than it takes to get Lyme, from a tick bite, among other methods of transmission). Cowden takes a systematic approach to treatment, mixing detoxification in with the herbs that fight infection in order to make the treatment more tolerable than other methods, like oral or intravenous antibiotics. The herbs are also rotated through a specific schedule to kill off what is likely to be present as other infections die. It is a 9-month program, with the option to continue until full health is realized once complete.

Although Cowden does not need to be purchased through a medical professional, it is best when followed under the care of a LLMD (Lyme Literate Medical Doctor) for assistance with side effects and other issues. I've been purchasing my products through Nutramedix, although they can be purchased through other websites as well. (See link and discount code at the end of the post.) After trying many other remedies, Cowden has been recommended to me by my LLMD, so I started it almost a month ago.

As I mentioned in a previous post, part of the protocol involves drinking 96 oz. of water a day. Other than the normal benefits of drinking a lot of water, this is done to help detoxify your body as the bacteria die off. One of the biggest complaints of Lymies is the Herx reaction, which is when you feel worse from treatment before getting better. This occurs when the dead bacteria linger in your system. People experience this in different ways because the symptoms of Lyme vary so greatly, but the main theme is that whatever a person's weak spots are, that's where they tend to feel the Herx the worst. By drinking so much water, you flush the dead bacteria from your system before they have a chance to cause problems.

If you do experience any kind of Herx reaction, the program has instructions for taking additional detoxifying herbs to get rid of it. It is even suggested that you slow down the program until the Herx goes away. While 9+ months is a long time to take to complete the program, many Lymies have been suffering with the effects of Chronic Lyme (or whatever doctors want to call it these days) for years upon years, taking forever before they are even diagnosed and then struggling through treatment after treatment with little to no results. A 9-month protocol with minimal Herx reactions is as good or better than many other treatments.

So, my experience so far? Fairly neutral, but I think that's to be expected at less than a month into the program. As I type this, I'm suffering from a mild migraine (yes, there are varying degrees, and after living with them for so long I've learned many coping mechanisms), joint pain, typical fatigue, back pain, and neck pain, to name a few things. I can't ever be sure whether a migraine is a Herx reaction or just my normal symptoms, so I increase my detox herbs just to be safe, but in the end I'll most likely have to take my prescription medication to get rid of it.

But I can report that I'm up to the full dose of Samento and Banderol for the month without having experienced any major setbacks. These are two herbs I've tried before and I've always had major Herxing that caused me to lower the doses for a time before continuing up to the full doses. So that's a positive for the program. I know Samento and Banderol do something to kill off Lyme and co-infections, so if they're working quietly without causing a Herx, I can at least operate at my level of normal while on the program.

I'll check back in a little while to let you know my progress. There are other herbs that will be mixed in eventually, so I'm curious to know whether they'll make a difference.

If you use this link and the discount code TAF16, you'll receive 25% off your first order from Nutramedix.

Water

2016-02-17T14:33:00.000-05:00

Everyone knows there are many benefits to drinking a lot of water. I don't need to rehash what we learned in 3rd grade health class here. But I've had to challenge myself to drink 96 oz. of water a day recently, and I've found some interesting things.

Why do I have to do this? Well, I'll be starting the Cowden Protocol next week. (Most Lymies will at least be familiar with the name, but Cowden is a set of herbal supplements that you take in rotation to help eradicate Lyme and co-infections. More on Cowden in another post.) One of the main rules of Cowden is that you MUST drink 96 oz. of water for it to work. I suppose this helps flush out the dying bacteria from your system.

In preparation for Cowden, I figured I better get used to drinking so much water each day. When I was still able to work, I used to drink plenty of water, but I'll admit my consumption has dwindled since I've been so sick. Sometimes just getting out of bed to get a drink isn't worth the effort. Now that I'm forcing myself to do it, here's what I've found:

Water bloat is a real thing. Sometimes when I try to drink a lot of water at once, I feel it sloshing around in my stomach. It's uncomfortable for a while until it begins working its way through my system. I don't know if that's a result of digestion/absorption issues from Lyme or if it's normal. I never know if things are normal anymore.
There aren't enough hours in a day. 96 oz. of water is a LOT. I drink water with all my meds and supplements and with my meals. I also drink it throughout the day. I limit myself to 2 cups of coffee a day (yeah, I know I shouldn't have any, but it helps my migraines) and I also drink 2 cups of Natural Care Tea as prescribed by my LLMD. Other than that, it's only water. I thought I was drinking a good amount, but once I measured out 96 oz., I was shocked at how far short I was each day. Sometimes I'm trying to chug the last cup right before bed and sometimes I just don't drink it all. Hopefully by the time I start Cowden I'll be more used to drinking that much every day.
It makes you pee a lot. I know this seems obvious, but I feel like I'm pregnant again with how often I have to go! 96 oz. in, 96 oz. out. Only unlike when I was pregnant, it's more like Niagara Falls than a babbling brook. When I used to drink more water regularly, I don't recall having to go so much. I don't know if that's another issue with my body's breakdown, or maybe it's my fuzzy Lyme memory. And since I sometimes drink that last bit right before bed, I wake up and have to go. Sleep interruptions are not a good thing, so I need to work on drinking more earlier in the day.
It reduces my hot flashes. This has been a shockingly pleasant side effect. I have no idea if it will work for everyone, but it has been a noticeable decrease for me. I've had hot flashes since surgically-induced menopause in July of last year, and I've tried pretty much every OTC remedy out there. I've been hesitant to go on long-term hormone replacement therapy for several reasons, so I've stuck to the OTC stuff and sweated it out. Literally. When I have hot flashes, I can be dripping sweat in an instant. But since I began drinking 96 oz. of water a day (or as close to it as I can get), I've felt a big difference. The number of hot flashes has dropped and those I do get aren't as intense. Major bonus and reason enough to keep drowning myself daily.

Maybe in time I'll see other benefits to all this water. For now, it still feels like I'm forcing myself to drink it every day. But keep at it, and in a week I'll start Cowden, which lasts for 6-9 months. I'll let you know how things are going soon.

Homemade Lip Balm

2016-01-15T10:21:00.000-05:00

Since winter has finally arrived in my neck of the woods, I thought it would be a good time to share my recipe for homemade lip balm. My family goes through lip balm like water in every season, but particularly more so when it's cold. If you're anything like we were, you're spending a ton of money on lip balm (anywhere from $1 to$20 per tube!) and possibly putting unnecessary chemicals on your lips, which means they end up in your mouth. I've also got a graveyard—okay, a drawer—full of products I've tried that didn't work as expected.

My solution? Make my own lip balm!

With this recipe, you can make it just the way you like it—and for a fraction of the cost of store-bought products. It might take a few tries until you get it just the way you like it, but in the end you'll have a product that works and you'll save a ton of money.

What you'll need:

12 Lip balm containers (I prefer these twist-up tubes, but you can use small pots)
1 Tbsp. Coconut oil
1 Tbsp. Shea butter
1 Tbsp. Beeswax (It comes in different forms, but the pellets melt easiest)
20 drops essential oil of your choice (I prefer peppermint)
1/8 tsp. Vitamin E
Glass measuring cup with pour spout (there are other options for pouring, but I've found this to be the easiest)
Frying pan
Water

How to make lip balm:

Fill the frying pan with some water and bring to a low boil. Turn heat to low-medium. Set the measuring cup in the center of the pan without letting any water get inside.
Use approximately equal parts coconut oil, beeswax, and shea butter. More beeswax will create a firmer product. You can experiment with how much or little you prefer. Add all three ingredients to the measuring cup and melt over low-medium heat, stirring to combine.
Once melted, add Vitamin E and essential oil and stir to combine. You can use more or less of these as preferred.
Pour liquid into lip balm containers. If the container you melted it in doesn't have a pour spout, you can use a dropper. Top off containers once they've sat for a minute. Let sit for a few hours before capping.

If you want to get fancy, you can add labels and give these as gifts. I've been sharing mine with extended family, and so far everyone likes them.

I spent about $50 on supplies, but coconut oil is something I keep around the house anyway since I use it for a ton of things. I've already made approximately 50 tubes of lip balm, and I have barely made a dent in the beeswax, shea butter, vitamin E, and peppermint oil. The tubes at $0.20 each will be my only expense for a while, so while my first few batches seemed to cost $1 each, they really will cost much less in the long run.

Anyone miss me?

2015-12-16T10:49:00.000-05:00

Wow, so it's been over 3 years since I've posted anything here. I guess it's time for an update if anyone's still reading this.

My health seems to only be deteriorating no matter what medications I try, and I've tried them all. I've done 2 rounds of IV antibiotics, countless oral antibiotics, natural and homeopathic remedies, OTC remedies ... you name it, I've tried it. I was recently on Samento and BLt for 3 months, and all of my symptoms got worse. My doctor and I couldn't tell if it was a herx reaction or actual worsening of symptoms, so I stopped those medications.

Nothing got better.

I'm now on 2 oral antibiotics: Omnicef and minocycline. This will be another 3-month trial. 3 weeks in, and I haven't seen any improvement yet. In fact, the detox medications my LLMD had me on (Burbur and Pinella) made the migraines worse, so I had to stop taking them. I realize sometimes you have to suffer through the worsening in order to get better, but with my current symptoms it was just too much.

The joint pain is the worst it's ever been. My fingers hurt so badly that some days I can't type. Other joints are also problematic, but my fingers seem to be taking the brunt of it. I have some kind of nerve issue going on in my lower back that causes random pain. It's there right now, and it essentially makes it so no position is comfortable. Then there's the extreme fatigue. On a normal day, I take about a 2-hour nap even if I got a good amount of sleep (I'm currently on Ambien because some immune factor on my blood work was low, and the doc says this immune factor regenerates when you sleep so I clearly wasn't getting solid sleep even if it felt like I was). If I've been active, the fatigue worsens, sometimes even after just a short while on my feet. Then it's a 2-nap kind of day. There's lightheadedness, tinnitus (my left ear is practically screaming at me all the time), swollen lymph nodes, migraines, general aches and pains, stiff joints (no matter what position I'm in, when I get up, my body just doesn't want to move), and random things that come and go at random times. Last night it was a tight muscle in one foot. So strange. I stood up and my foot just wouldn't move properly and I could feel the pull in the muscle.

That list could go on for a while, but you've probably stopped reading already. I'll just leave it at "Lyme sucks." I'm not sure I'll ever know if it's still Lyme, or maybe a co-infection, or perhaps the immune damage is already done to my body and can't be fixed. Whatever it is, it certainly makes life difficult.

I stopped working a while ago. I'll save the disability spiel for another post. For the moment, at least that's one less stress to deal with. Right now, I'm just working on the latest round of antibiotics and waiting for the results of a lumbar x-ray to find out what's causing the issue in my back. None of my current pain meds (I take tramadol and gabapentin daily) are helping it. Heat doesn't make it any better. Nor ice. Massage makes no difference since the pain isn't coming from a muscle. Fingers crossed the x-ray gives a hint of the cause.

Hopefully future posts won't be so negative, but this is just to give a general update on the last 3 years. I've been hoping to be able to post positive news. Maybe one day soon I'll have some.

Herx is a four letter word.

2012-04-12T10:14:00.000-04:00

Herx reaction - when existing symptoms are stirred up and make you feel worse before getting better. That's the story of my life for the past 10 days. Everything hurts. I have fevers. I'm exhausted, well more than usual. I'm lightheaded. The blurry spot in my left eye is back. My toes are going numb.

I know I'm supposed to see this as a good sign, but it's still hard to live through it. At least I am pretty sure of what caused it. I'm taking Tindamax in addition to the IV antibiotics and that seems to be what is kicking my ass. Five more days of this medication. Yes, I'm counting.

In case that wasn't enough, I now have to take a mega dose of vitamin D2. It seems that my vitamin D just continued to decline so we had to try another route. What I was taking over the counter was D3. The D2 is taken once a week, and hopefully causes a shorter reaction time than taking a daily dose. I can't say that I'm not having any reaction to it... I've still been getting migraines and lightheadedness, but the reactions do seem to be less than with the OTC version. So, I'm working my way through it and hopefully the reactions will continue to decline while my D level rises. And at the end of the day, the increase in D should contribute to feeling better.

Sitting in the IV suite with others has its advantages because I have now found that many of us have low levels of vitamin D, and one other person also has an allergic reaction to it as well. It's nice to know I'm not alone.

It's been a while

2012-03-14T09:51:00.000-04:00

Most days I'm too exhausted to write. Or too nauseous. Or too achy. It was a long road to get this sick, and it will be a long road to recovery.

For now, I'm celebrating a minor victory. My health insurance didn't want to pay for the medication that my doctor wants to treat me with. It took about 3 weeks to get the approval, and then they only approved 20 treatments, instead of the 60 that my doctor wants. Yesterday, the office staff spent an hour on the phone with my insurance company, and got approval for an additional 30 treatments. Still 10 shy of what my doctor wants, but we're getting there!

Otherwise, yesterday was pretty crappy. As if I don't have enough going on, I've come down with a cold and sore throat. Lots of body aches and pains, too. Today is starting off a little better. Hopefully this keeps up.

Day One

2012-01-31T21:59:00.001-05:00

Today was interesting. The doctor has me on 2 medications. The first is the same one that I was on last time. The 2nd is supposed to help the first one work better. Although the first one took longer than the usual hour to drip (just to make sure I didn't have a reaction to it since it's been a while), there were no problems. The 2nd medication needs to drip for over an hour to avoid reactions to too much at once. Mine took closer to 2 hours. And I'm glad, because I guess things could have been worse if it had gone faster.

About 10 minutes before it was done, I started to get itchy. I didn't really think too much about it. Lots of things can make me itchy. But one of the nurses insisted I take benadryl before I left. She said I looked a little flushed, which is one of the side effects. I didn't really want the benadryl since it makes me so sleepy. I was worried about driving home. I'm glad I listened to her though.

A few minutes into the car ride, the itching got much worse. I mean, I felt like I didn't have enough fingers to scratch everything! My right wrist was on fire from the itch, and then it moved to my hand. After that, I noticed that my hand felt funny. My palm and thumb started swelling. My fingers got a little swollen, just enough to feel strange when I tried to bend them. This lasted until after I got home.

I guess it was good timing that the benadryl kicked in right after I got home. The swelling didn't progress anymore, and the sleepiness took over. By the time I woke up, my hand was mostly better and the itching was gone. I can only imagine how bad it would have gotten if I hadn't taken the benadryl.

Let's hope that tomorrow is better!

Round 2

2012-01-30T10:11:00.000-05:00

It's all in my head... at least the proof is all in my head. After IV antibiotics, 2 different oral antibiotics, and some antimicrobial medications, I'm still not feeling any better. I'm worse, actually. Lightheaded more frequently, body aches, joint pain, numb toes, a blurry spot in my left eye, and the list goes on. The specialist finally ordered a brain SPECT scan, which showed several areas of decreased blood flow to my brain, one area of no blood flow, and one area of abnormal flow. All of this is indicative of inflammation from chronic lyme.

So, today I am going in for insertion of a new PICC and tomorrow I will start round 2 of IV medication. This time will be a combination of different medications which are supposed to better cross the blood-brain barrier. I'm hoping for some better results this time. All I can do is keep fighting.

It's just a cold.

2011-11-14T21:40:00.000-05:00

At least, that's what it would be for anyone else. For me, it feels like my body is rebelling. It started with a fever for a few days last week. I thought it was from the new medication that the Lyme specialist put me on. But then the stuffiness started. Breathe Right strips were not working to help me sleep. When I don't sleep, everything feels awful. I had to resort to Afrin to get some sleep. The stuffiness has not gone away, and now it's mixed with migraines and dizziness. Wonderful.

It's almost 1 AM

2011-10-17T01:10:00.001-04:00

I should be sleeping. This is one side effect so to speak that I can't get used to. I don't know what it's a side effect of, but it has only been happening in the last year. As tired as I am, when something wakes me up, I can't fall back to sleep. Sometimes it is hours before I can get back to sleep. So far tonight I've been up since 11:45, after going to sleep at 10:00. I had an exhausting day and fell asleep very quickly. I'm still exhausted so I don't know why I haven't been able to go back to sleep. Sometimes I just need to get out of bed for a little while and then try again. Then I end up falling asleep right before my alarm goes off. And then I'm a wreck at work.

Speaking of being a wreck, this week is going to be rather stressful. After all of the recent rain, we've had a lot of flooding in our basement. And mold. Who knows how long the mold has been there, or if it's been contributing to any of my health problems. So I'm anxious to have the basement fixed and the mold removed. But that comes at a price (my sanity). We have to have everything moved away from 2 whole walls of the basement (that's half of the entire basement). Everything has to be moved 8 feet out from the wall. All furniture, carpets, everything! When your basement is partially used for storage and the other part for living in, it's no easy task to find space to move everything TO. I spent the day today going through toys, trying to get rid of stuff, moving things around, and I feel like I got nowhere. Sure, there are several boxes and bags of stuff in the garage to be donated, and some trash, but there is still so much to do and I'm really stresses about it.

On top of that, Jackson's birthday party is on Saturday. So i have errands to run to prepare for that. Then family will be coming over after the party. Thankfully, I know they understand the situation and will forgive me for not having a spotless house. In fact, a few of them are even staying to help move furniture on Sunday in preparation for the french drain installation on Monday.

And of course, I have a job to go to all week.

Side note, I had no idea how many DVDs we had accumulated throughout the years. I filled 2 boxes while emptying the entertainment center, and that doesn't even include the kids' movies which are stored somewhere else!

Medication side effects

2011-10-06T09:35:00.000-04:00

There is never a dull moment for me. Between migraines and fevers and aches and pains, I also have to deal with the side effects of the medication that I take to try to help all of it. I'm now on another antibiotic to treat a Lyme co-infection called mycoplasm pneumoniae. With all of the fevers, the doctor is convinced that there is another infection going on. Since my tests show positive for a past infection, the doctor is treating it. I'm taking an antibiotic called Biaxin. I've never been on this one before. The first thing I noticed was an awful taste in my mouth. And it just won't go away. After a few days on the medicine, I started to have stomach pain. The kind of pain that wakes you up in the middle of the night. Funny that one of the listed side effects is diarrhea, but since I never get the usual stuff, I'm having the opposite problem.

For the adrenal fatigue, my primary doctor has me on pregnenolone. It's not exactly a steroid, but technically it's the precursor to steroids. No surprise that I'm having the typical steroid side effects. If I take it without a full meal, I get really nauseous within a half hour. And I'm starving all the time. So of course I'm gaining weight. And my favorite... I have to pee constantly. I can't stay out of the bathroom.

So today I'm home. I woke up with awful stomach pains and a migraine. Hopefully things will get better soon.

My doctor's advice:

2011-09-14T11:16:00.000-04:00

1. You need to quit your job.
2. You need to reduce your stress.
3. You need to get more sleep.

I'm not really sure how any of those things are going to happen. It appears that I am now in stage 4 (of 7) of adrenal fatigue. Basically, my adrenal glands are not producing enough cortisol (and other important hormones) to keep me going. This is one of the reasons I'm always so tired. I don't have enough cortisol in the morning to even get out of bed, and then it keeps going downhill throughout the day. It's also the reason I take much longer to recover from illnesses than most people.

The doctor has suggested a few band-aid approaches, but I am not feeling any difference yet. And the running around of the beginning of the school year is not helping. But this is life and I have to live it.

That didn't take long

2011-08-08T19:51:00.000-04:00

My primary doctor thought we'd try one more form of vitamin D. She found a compounding pharmacy not too far away and the pharmacist said he could make a vitamin D cream to apply transdermally. The theory was that if my problem was being caused by the D passing through my digestive system, this would eliminate the issue.

So the nice pharmacist made up a batch of cream for me to try, and even shipped it to me free of charge (the sample was also free!). Based on his instructions, he gave me enough to last for 12 days which is long enough to see if I had a reaction to it. Of course, I only used half of the recommended dose, being afraid of having problems again. I applied it yesterday, and again this morning. On the way home from work tonight I started having the familiar lightheaded feeling. It only happened a few times, but thankfully I recognized it at once and I know it's being caused by the D so I won't continue with the cream.

My last experiment is to try only using it once a week. According to my doctor, if I can tolerate it in tiny doses, it's still better than nothing.

Oil of oregano

2011-08-07T18:19:00.000-04:00

I'm all for homeopathic remedies, but oil of oregano has to be the most disgusting thing ever! Yesterday, my ear and throat started hurting really bad. My left tonsil was all red. I've read great things about the healing powers of oil of oregano so I thought I'd try it. Now, I don't mind some oregano on my pizza, or in sauce, but liquid concentrate straight on your tongue is just awful! I drank a ton of water to get the taste out of my mouth but that didn't work. A couple of crackers helped a little but the taste lingered for hours.

The good news is that it did help my throat feel somewhat better. At least it was tolerable for a few hours. It helped enough that I even choked down a second dose later in the evening. Today I switched to Throat Coat tea with honey.

Update 3/25/16:

I've actually been taking oil of oregano on a regular basis lately, and it does have some pretty amazing powers. It helps get rid of colds, sore throats, and numerous other issues. It's also good for candida. Thanks to all the antibiotics I've been on in recent years, I tend to get candida in my throat. Oil of oregano stops the growth and actually keeps it away.

For a while, I was choking down the liquid form, but I recently began taking it in capsules. These capsules work really well, so I'm going to keep taking them twice a day, and more as needed when I start to feel sick. The liquid probably works better for certain things, like throat issues since it goes directly to the source, but the capsules are great for everyday use. Plus, it's easier to convince my kids to take a capsule when they get sick than it is to get them to drink something with the drops in it!

Still more questions than answers

2011-08-04T08:57:00.000-04:00

It's been a long, hot summer. I don't handle the heat very well, but it seems that I'm not doing well even when I hide in the air conditioning. Fevers, migraines, aches and pains have kept up at a steady pace. It's been over 3 months since I finished the antibiotic treatment, yet at my 3 month follow up I still had pain and swelling in my ear, swollen glands, and a fever. If that only lasted a few days, I'd say it was a normal virus. But it's a daily occurrence.

So, more testing and waiting for more answers. Today all of my joints hurt. The last few days have been full of migraines and fevers. I can't win. If it was just one issue, I might have a good day every now and then. But every day it's something different. What will tomorrow bring?

Slept late and had a nap

2011-06-25T19:43:00.000-04:00

It's been one of those weeks. All of the running around to the doctors, and working, has me completely wiped out. Thankfully, Megan took a good nap this afternoon so I was able to take one, too. She wants to go to the pool later, which will wipe me out even more.

This week I had an uneventful visit with the dermatologist. Then I met with the audiologist. As I already knew, there is no cure for tinnitus. She offered a few suggestions of things that I can do to help, but no matter what, she said it will take time. Even if it is a result of the Lyme, she said it could take up to 18months after treatment to get better. That's not helping.

I'm still on the gluten free diet, which really sucks. I wish all of these trials didn't take so long to get results. It's been a week and a half and I see no difference. Man, I just want a magic pill! I'm eating right, sleeping as much as possible, cutting all of the bad stuff out of my life, and I still feel like crap on a regular basis.

Doctors, doctors, doctors

2011-06-20T09:48:00.000-04:00

Last week, I had a follow up with my ENT to go over the results of my CT scan. The short story is that he wants to remove not only the recurrence of the hemangioma in my neck, but also the muscle that it is attached to. He said it's not a rush, but he suggested having the surgery in the next 2 to 3 months.

I had another hearing test while I was there. Good news is that my hearing has not gotten any worse since January. The bad news is that they still can't figure out any reason for the tinnitus and ear pain. So this week, I'll meet with their chief audiologist to see if she has any suggestions.

The next stop was my primary doc. I wanted her opinion on the surgery, and also just to follow up in general. She had no ideas about the hemangioma. Even looked it up on her medical sites and couldn't find any information. She said it won't hurt to get a second opinion. Sure, in my spare time. Other than that, when I told her how bad I was still feeling, she suggested I try an elimination diet to see if there is any food allergy contributing to my issues (migraines, exhaustion, fevers). She's not the first person to tell me that you can be gluten intolerant without a positive celiac panel. I told her I'd give it a try, but I don't think that's the issue. I've been trying the diet for about 5 days, and the biggest problem is that I'm starving!

Today I took a vacation day from work (at least a little extra rest) so I can take Jackson to the Lyme specialist. It's his follow up appointment. My follow up is next week. But first, later this week I have a dermatologist appointment and the appointment with the audiologist. Busy, busy!

Still the same

2011-06-12T10:02:00.000-04:00

It's been about 6 weeks since I finished treatment, and I don't feel like much has changed. I'm still running fevers on a regular basis, still have ear pain and tinnitus, and the exhaustion is even worse since starting back to work in the office. Now I have less time to cook healthy food. And more running around to do. I'm not sure how long I can keep up at this pace before I completely burn out.

How do I get so lucky?

2011-05-22T19:50:00.000-04:00

It seems like I am the only one with such bad luck. I finished my Lyme meds on a Friday, and thought I'd be feeling better by the end of the weekend. Instead, by Sunday night I had fluid in my ear and an ear infection. I felt awful on Monday. Earned myself another antibiotic and a steroid. It took a good week for my ear to stop hurting. The same ear, of course, that has been giving me trouble for the last few years.

Two weeks later, and I still feel the effects. My one month follow-up with the Lyme specialist is this week. I had really hoped to be feeling somewhat better by now. I'm still exhausted. I took a nap almost every day in the last two weeks. The only bright spot right now is that I've seen additional improvement in my neck. I actually noticed at the end of a rather long and trying day last week that I didn't have my expected neck pain. Not even the rotator cuff pain that was going down my arm - unrelated (so I thought) to the surgery. I'll take it!

Please disembark the ride

2011-05-06T20:14:00.000-04:00

I just took my last pill for Lyme treatment. The last week and a half, since I had the PICC removed, has been quite the rollercoaster ride. Fevers have been up and down, migraines, exhaustion... all the fun. You would think that after the IV was done I would start to feel better. But, the doctor wanted me to take the oral Tindamax for 10 more days. The Tindamax is a killer. Now it's over. The warning label says not to drink alcohol for 3 days after finishing the medication, so I'm hoping that within 3 days this will be out of my system and I'll start to feel human. Maybe in time for Mother's Day? That would be nice.

The last few days have been rather surprising though. People I know who have had Lyme have started coming out of the woodwork. It's amazing that so many people have had it yet there is so little known about it in the medical community. Just today I was at my dentist and found out that one of the assistants "had" Lyme. She's been treated and told that she was cured, but she said she still feels like she's having relapses. She asked for the name of my specialist, because she said she now needs a doctor who really understands the disease.

On a related note, I got my own copy of the documentary Under Our Skin. It's a fantastic movie about how our healthcare system is failing Lyme patients.

Anyway, a little bit of energy would be nice. Maybe a day where I don't hit a wall at noon and need a nap before I fall over. Or a day without a migraine. A girl can dream.