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An Open Letter: What Does It Take To Be An Advocate?

7/29/2014

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Doing advocacy work is not for the faint of heart. There is so much more to this than just putting my face on something that says, "Hey pay attention to Lyme disease!" There is a component you need to be a good advocate and that's the ability to bare your heart. It's the ability to listen to the problems & gut wrenching stories of people around the world & try not to let it break you down, but instead inspire you to work harder. It's the hours upon hours spent trying to help others virtually by offering advice and suggestions, or locating them a Doctor. It's the joy you feel when your advice is helpful, but it's also the sorrow you feel when it wasn't enough.
That's the part which people forget. That's the part which wears me down.

I am an empath by nature. It's both a blessing and a curse. An empath takes on the emotions of people around them & soaks it all up. Other people's sadness becomes my sadness, and I have a hard time separating the two. Sometimes I need to take time for myself to recharge because it becomes too much. Being both an empath & an advocate is a combination that can wear down my soul because there are very few happy stories that that come around.

I think the hardest part of this job is realizing I can't help everyone. As much as I want to, I am just one individual who is fighting her own battle too. There is only so much of myself I can give, so I work to put out as much information as possible in hopes that it will be enough. I work to give my friendship to anyone who contacts me in hopes that they feel less alone. But what happens when it's not enough? I knew that what I had to give couldn't be enough to save everyone, and when that moment finally came I felt the heartbreak deeper than I could have imagined.

Someone reached out to me recently asking for help. She asked for more help than I could realistically give in my current situation. Her story pulled at my heart and I could feel the desperation in every word she wrote. So I did the next best thing and I offered other options & suggestions. I offered support, I offered to start a fundraiser, and I offered to make calls on her behalf to every LLMD possible to get her the care she requested. I racked my brain and sent her a wealth of information to arm her with what she needed to succeed. Anything I was physically able to do I did. Once our dialogue ended it seemed like it was on a positive note, and she had found many people who offered to give her the help I could not. I thought everything would be okay. So you can imagine my shock when I got word that very recently she took her own life. It came down the fact that she couldn't get the help she needed for her soul, and inevitably it was the only option she felt she had. When I got this news it felt like someone took my heart and crushed it. I couldn't believe the words my eyes were reading on the screen. Despite what many believe she had support; she had people across the country rallying for her and lending helping hands. But at the end of the day it wasn't enough. The pain won the mental battle.

That is the reality of this disease. You can go online and see all kinds of fun Instagram posts of perfectly curated gluten free oatmeal photographed in a ambient light. "Look how fun clean eating can be!" says the caption of the organic Quinoa in red pepper sauce. You can get on twitter and see quotes filled with hope and people talking about the yoga they just did which was SO rejuvenating. "Look at me, I'm up at 8am doing yoga I'm so zen." You can get on Facebook and see people putting only their best face forward when they talk about their lives and the amazing day they had. But that's not real. THIS is real. The pain is real. The depression is real. The unrelenting loss of hope and non stop heartache that drives people to take their lives is real... because the thought of living with this disease is too much to bear. In the digital age we only put the things out there which paint us in a favorable light. We like to show off the pretty things & hide the reality. But that isn't authentic. Being an advocate means showing what's REAL, because people need to see it. It's not always roses and rainbows hidden behind many layers of filters. I put my heart on my blog and I wear it on my sleeve because it's the genuine truth, and I pride myself on that. I want people to see me and realize they aren't alone, and someone else out there is hurting too who knows how they feel.


Being an advocate means not ever shying away from the cold hard facts. It means reaching out to those who are hurting and offering them a shoulder. It means admitting your downfalls and showing your weakness so that other people realize they aren't alone. It means speaking out for those who feel like they don't have a voice. It means being the unpopular opinion in a world that's so focused on being popular and well liked. And most importantly being an advocate means being selfless. Because this is a full time job, one that never rests.
So you have to ask yourself, do you have what it takes?

Being an advocate has been the biggest blessing while also being the biggest source of heartache. I don't think I could ever find the words to express my sadness, guilt and inadequacy that I feel right now. I know it will take time for me to realize I won't be able to save everyone, try as I may. I wish for nothing more than the ability to have the resources to take every lost soul and connect them to a vessel of hope somewhere. But that isn't realistic. The only thing I know I can do is be me, and keep trying day in and day out to be the best version of myself for those who seek guidance.

So for now I'm going to take a brief leave of absence to get my bearings and recharge. If I don't reply to emails or tweets that's why. Please know I love and care about all of you so much, and I know you fight this battle every day with the greatest courage. But sometimes an advocate has to rest & I now is the time I have to take care of myself.


God bless,
Christina

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Update: VOC's, Chemical Toxicity & Treating Giardia with DesBio Series Therapy 

7/25/2014

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Hi guys! It's been a while since I have gotten to do a post on what's happening with me treatment wise. So I thought I would give a little update on things I'm doing, and what's to come.

These last few months have been very tough. I had a surge where I felt really a lot better, and then my health started to go downhill slowly as far as the symptoms I was experiencing. I started to have a lot of new troubles (primarily neurological and G.I related), and I could not figure out what was happening. My mind raced for a long time with worry and frustration. I was detoxing like crazy and still very overly toxic. My brain felt as if it was constantly electrified, with around the clock anxiety and brain zaps. Noise was bothersome, light was bothersome, and everything flared horribly at night. My night's went like this: lay in bed herxing and sick until 8am, go sleep from 8am-2pm, repeat. It was like I was stuck in a cycle where nothing I did helped. I compare it to being in a corn maze and hitting a wall every direction I turned. This went on for a while, and some of the symptoms got very scary. I had night time episodes which were akin to mini seizures, I would awake gasping for air, choking, gagging, pale, groggy. Scary stuff. A big part of the reason I didn't update this blog on the personal front is because every time I tried I didn't know what to write. If I just talked about how bad I felt without having an answer then it would have been just one long post where I complained. And I really hate ever coming across like that.

So, I waited. I waited until I finally started taking steps in the right direction. To recap: I tried to begin treating the Protomyxzoa (one of my co-infections) by doing 3 months of a standard parasite cleanse. This was to prep my body by cleaning out any small parasites that might be in the body, and get me ready for the big guns when we treat the Protomyxzoa, which is a blood borne parasite. Well, when I got to round 2 it became obvious that my stomach was not tolerating the meds what so ever. Which was an issue. On top of that my night time episodes were getting more severe. So I halted treatment in hopes that I could just detox and get caught up and then jump back in. Well, instead of that happening I just got worse and worse. So I just spent my time trying to put out as many fires as possible, and managing symptoms any way I could.

Fast forward to now and here is what I learned and what is going on:
1. My new furniture was quite literally slowly poisoning me. At the end of January I re-did my room. I was very conscientious to buy non-VOC paint (VOC is chemicals in paint that can be strong and effect the nervous system), and I took all the precautions to make sure no toxins got in there. Once my room was freshly painted with this safe paint, I ordered this gorgeous new white furniture. What I did not realize then was that new furniture is FULL of chemicals; Formaldehyde being a prominent one. When you buy new furniture it takes a while for it to "off-gas," which means how long it takes the furniture to stop emitting the toxic fumes into the air. Furniture typically takes 1-7 YEARS. Yes, I said years. So here I was in my room with this new furniture, which left me breathing in VOC's around the clock. For someone like myself I have many chemical sensitivities. And I also have trouble detoxing due to my genetics. Therefore slowly but surely these toxins built up in my system. These particular toxins also are mostly neurotoxins which means they act on the nervous system (the brain), and hence my crazy symptoms in that realm. Just to test this theory I moved out of my room into another room in the house that is safe and I immediately felt better. Within a day my brain had calmed down and my nights were much more smooth. So, unfortunately (or maybe fortunately) my theory was correct. Now I'm working on ways to remedy the situation, I will keep you all posted on that in case this interests anyone else. I can't possibly urge you all enough to try and think about what is in your environment if you get a flare. Sometimes there is hidden mold, other times its other chemicals that snuck in. Do your research! The change for me getting out of the environment was almost immediate and life changing. I always did notice in the past that when I left my bedroom for extended periods of time I felt better. I just could not figure out why, until it dawned on me when I put 2 and 2 together. Headboards, mattresses, pillows, furniture, carpet, flooring... these are all things that omit VOC's.

2. I will spare you the details on how this came about, but I just began treating for Giardia Lamblia. If you are not familiar with this bug, it is one that burrows into the walls of the stomach and causes G.I distress. Giardia can turn chronic because it is able to protect itself in cyst form, and hence why it is often missed. It is in the parasite/protozoa family and can tend to be cyclic and flaring at night, among a lot of other things. As soon as I started treatment for it I felt absolutely miserable. Which was a sign that I was doing the right thing. I am on day 5 of a 60 day treatment, so prayers that I get through this would be very much appreciated. It's been probably one of the toughest things I have done in a long time. There is really not much I can do to relieve the symptoms as I go through it. I have tried a wide variety of things but thus far nothing has particularly made a large amount of difference. I think I'm going to just have to muscle through, I'm just trying to get through the days and know that at the end of this I will be so thankful for treating it! The fact that I have had this bad of a reaction just goes to show that it is indeed pretty severe and pretty deep down in my stomach. I'm just so happy that at least I know this will give me relief in the long run. For those of you curious I am doing the Deseret Biologicals Giardia Lamblia Series Therapy. I love DesBio, they are hands down amazing in terms of treatment plans. And no, I'm not being paid a cent to say that!

Okay, I think that about covers it. For now I am hunkering down and working on treating the Giardia, staying out of my toxic room until I can come up with a plan to get the chemicals out, and I will keep the whole length of my Giardia treatment covered under the Treatment Blog tab (tab up top) for those of you interested in following along. I won't be posting about it here on my main page until I'm finished and have some news to report.

 I hope you all have a wonderful weekend!

xoxo,
Christina
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Join Me For A Live Twitter Chat About Lyme Disease

7/21/2014

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Every week WEGO Health hosts a Health Activist chat on Twitter, which covers many different topics and diseases across the board. This week the topic is Lyme Disease and they reached out to me to guest host the chat. I'm so excited to be doing so and I hope you all can join in, be it participating or simply just listening in on the conversation.

The Lyme Chat will be this Tuesday 3/22 at 3PM Eastern Time. The chat lasts approximately 1 hour. The easiest way to follow along with the chat is to use the online site "Tweet Chat" and follow the hashtag #hachat. And make sure you follow myself on twitter @LadyofLyme as I will be doing all the questions from my account, as well as @WegoHealth because they will be the ones moderating the chat throughout. But like I said, going online to tweetchat from your smart phone or computer is the easiest way to follow along in real time.
I'm looking forward to joining all of you and hearing from you guys on different topics. The best way we can help one another is by sharing information. This chat will open up doors to be able to hear what others are doing and share what you are doing as well. Even those of you who are caretakers of someone with Lyme disease or have a close friend/relative, it will be very beneficial to get the insight and maybe learn a few things along the way.

See you guys there!

- Christina
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How To Check If Your Personal Care Products Are Safe, Chemical Free and Non-Toxic

7/16/2014

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The skin is our largest organ. I don't know the exact number, but I have read that somewhere around up to 50% of what we put on our skin ends up in our system. That amount is shocking, but honestly for me even if you said 10% that would be a huge deal. That means 10% of all chemicals that are TOXIC to ingest are getting into our system when used topically. I don't know about you, but that terrifies me. It's no wonder that the rate of Cancer is growing because we are surrounded by toxic substances. It takes such a huge effort to eat clean, that sometimes we forget we also have to get clean with our personal care items as well. If we want to get well and most importantly STAY well, we have to be diligent in all aspects of our health. This means doing a complete overhaul of all personal care products and making sure that they are indeed safe to be used.

Over the course of the last 2 years I have made a total switch to all natural, toxic chemical free products in every single aspect of my life. This includes all house cleaning supplies, detergents, makeup, lotions, deodorants, etc. I am going to do a 2-3 part series that includes Body Care, Makeup and Home Cleaning items in an effort to hopefully help some of you guys. Making the switch for me was slow because I had to experiment with a ton of stuff. Just because something is natural does not mean it should slack on quality. I wanted my product switch to be one that was seamless, and although it took a while I have a standard go to routine with a lot of options for amazing stuff. I will be posting this here, but also I will create a new page tab up top called "My Favorite Products" and it will be there easy to access (so you don't always have to come find the posts). I will be posting the series over the course of a couple of weeks, since its so tedious to put it all together and I don't always have tons of energy. But I will do my best to get them all up back to back.

But before I go, I wanted to mention the most important part of this whole post, and that's sharing with you one of my favorite websites that helped me on the quest to go toxin free. It's called the EWG Skin Deep Database. This is by far the most comprehensive and amazing database (with almost 70,000 products) to check the safety of any personal care item. You can search by product name or brand and it will give you a rating from 1-10 as to how big of a hazard it is. The best part is you can also search specific ingredients and it will rate the ingredient as well, AND tell you what the ingredient is known for.

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As you can see, you do NOT want to touch something with Propylparaben in it, as it's rated a 10 for the reasons listed above. This is just an example of how the Database works. It's truly an amazing thing to consult. Although not every single product is in it, I have found about 80-90% of the Brands are. And if they are not they I simply search the ingredients I am unsure of to see if they are toxic.

As far as what rating you decide is good for you, that is a personal choice. I know some people say "I will be okay with anything 4 or below." Other people only feel safe in the Low category of 1-2. I personally have gotten down to all skin care products being a 1-2 because it just worked out that the stuff I loved the most were also the best for me. So, a total win-win.

The biggest thing you learn when you begin to cross check your items on the EWG Skin Database is that you can no longer shop at places like Walgreens or CVS. It just isn't realistic, because even stuff like Neutrogena or Aveeno have a 7-8 rating on most their products. It's frustrating that it's the case, but I hope that with more of an awareness of these toxic chemicals that those big companies will be forced to make changes. If we all stop buying them and instead buy the organic natural stuff then eventually they will have to change. Aveda took out Parabens from their products once they realized how many people were leaving due to that. I believe that change starts with us, and I'm hopeful that this cross checking won't have to be permanent. However, for now it's the very best option there is.

So your first assignment if you are reading this is to head over to the Database and test out some of the stuff in your bathroom cabinets and showers. Do they pass the toxicity test or not? As soon as you have a grasp on what needs to be reformed you can put together a list of items needed. And in the coming days and weeks I will post about my tried and true favorites and also where you can find them.

Let's detoxify our skin!

xoxo,
Christina

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Why A Fast Detox (Cholestyramine) Can Cause A Herx In Lyme Patients. Plus, Information On The Role Toxins Play In Our Bodies, And How They Cause Symptoms & Inflammation.

7/7/2014

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I have been working on this post for a long time, gathering information and putting it together. It’s a bit long but VERY informative. Please take the time to read this, as I speak about why detoxing too quickly can cause us to get sick, and also how toxins specifically play a role in inflammation and symptoms in the body.

As it turns out it is possible to have too much of a good thing. Especially in those with chronic illnesses, you have to be careful when it comes to any form of detox or supplementation. Although it’s something that is good for the body, it can backfire if you go too quickly. In our bodies we collect toxins, especially as we kill off pathogens. If you have been in treatment for a long amount of time you might find that as time goes on your go-to detox methods aren’t giving you the same results. Keeping up with staying detoxed can become an issue, like it did for me. My Epsom foot baths, Burbur, liters of water, and even lymphatic massages just weren’t cutting it on their own. I would do all of the above aggressively and instead of getting a good detox I still had visibly inflamed kidneys and a painful liver. I ended up having to halt all forms of treatment or immune boosting supplements recently while I try to play catch up.

For those of you who have been there you might find that your doctor prescribes you a medicine called Cholestyramine. Cholestyramine is a powdery substance that you drink which is a vehicle for binding and removing biotoxins and neurotoxins. In fact this substance was originally created for those with high cholesterol, but is now used by the U.S Government to treat military personal exposed to neurotoxic chemicals. It is very effective, has few side effects, and does not leave the digestive tract, so it will not make its way into the blood stream. As your liver detoxes it dumps out toxins and sends them into the colon, where the Cholestyramine is able to sweep in, grab on tightly, and hold on until it can be excreted. It is especially beneficial for a detox plan because otherwise you risk the toxins being reabsorbed by the colon before it can make it’s way out, so you are left in a cycle where you work your liver hard to end up having a majority of it reabsorbed all over again.

Cholestyramine really is a wonderful medicine, and it can be purchased pure (without additives or sugar) from a compounding pharmacy, which I love. I mix it up with cranberry juice and drink it as directed. With that being said, it is also a VERY powerful medicine, and I wanted to discuss some important information about this protocol, which I don’t find to be readily available elsewhere. A lot of people discuss taking Cholestyramine and stopping it early on because it makes them feel worse. Many people will feel good for a few days and then end up flaring badly, and do not understand why. Truth be told that concept never made sense to me either. I sort of wrote those comments off as misinformation and didn’t think twice about it. It seemed impossible that something that is a toxin binder could do any kind of harm, right? Well I was wrong, as I experienced this first hand myself recently. In an effort to bring my toxin levels down my Doctor put me on Cholestyramine daily, and what began as the first 3 days being filled with energy, appetite and zest, ended with the 4th day going downhill fast. (Full disclosure I used to drink this religiously every day for the first year and a half of treatment, then fell out of the habit. During my first go around with this I do not remember if it flared me because at the time I was so bad off I didn’t notice).

I took to the World Wide Web to dig around about what was happening, and this is where I learned a wealth of information from Dr. Shoemaker, who created the Cholestyramine toxin binding protocol. I got a lot of info from the Biotoxin Wars page, and from Dr. Shoemaker directly. I wanted to share below the explanation as to why you get worst on it in the beginning. This conversely can apply to other powerful detox supplements as well.

Biotoxins from Borrelia are fat-soluble, meaning that they predominately reside in your fat cells. When you begin to use Cholestyramine (abbrev. CSM), it starts binding to the biotoxins in your G.I tract and sweeps them out of the body. Suddenly there is now “new space” for more biotoxins to move on down the line from the stored fat cells into this open area (your stomach). I envision this like a bucket that is too full. You can dump out some of the contents, which frees up space, but then it gets filled back up with more. This is what is going on in our bodies when we take CSM. We are expelling the toxins in the bile at a very fast rate with CSM, as it is incredibly powerful. And sometimes you can do this too quickly. When you get rid of too many of these toxins in a short period of time your body begins dumping large amounts of neurotoxins from the fat cells out into the body, quickly flooding you with a toxin overload. This is what causes the quick short-term relief followed by the fast sharp decline of health. This cycle can continue for a long time, and I will explain why.

These biotoxins bind to the insulin receptor sites on the fat cells. Once they are there, a switch is turned on by the body, which triggers and alters DNA, causing the fat cell to produce a powerful cytokine called Tumor Necrosis Factor-alpha, or TFN for short. This is why toxins cause so much inflammation in the body, because a presence of a lot of cytokines creates inflammation. In Layman’s terms, once the biotoxin attaches to the fat cell, the fat cell becomes a TNF producing factory. Imagine millions of cells in your body producing this powerful cytokine. In controlled amounts TNF is helpful and vital to the immune system, but in these large quantities these cytokines are responsible for many of the symptoms we experience. Too much TNF will make you feel terrible and is sometimes referred to as a “TNF storm.” This process happens to all of us with chronic conditions that have toxins, and it’s important to understand it so you can know what to do about it. Our fat cells are basically a refuge and hiding place for the toxins. They gather up there wreaking havoc but staying safe. Then once you get a little bit detoxed in your G.I system they run out there and fill up that space, and then even MORE neurotoxins fill up the newly free fat cells. It’s a vicious cycle that creates a hard situation. This is why we can get very backed up with toxins even though we are diligently detoxing as well as possible. Even those of you who do not take Cholestyramine can benefit from this knowledge, and what I am about to discuss as an option for help and relief.

Dr. Shoemaker knows that this process happens in our bodies, and that is why when he meets someone who has had Lyme for 5+ years (as he knows they are very toxic), he alters the protocol. He won’t just jump in and give this kind of patient Cholestyramine right off the bat. As I stated above, the biotixins bind to the insulin receptor site on the fat cells, much the way as insulin itself would. Therefore the protocol is to block the insulin receptor site, so that the biotoxins cannot bind to it. These biotoxins use our fat cells as a safe house so to speak, by latching on and collecting up in high amounts. When you take away their ability to latch on they can’t migrate and hide there anymore. Dr. Shoemaker prescribes a medicine called Actos, which does just that. It is used for people who need to block insulin receptor sites. He gives it to his patients to take for a week or two prior to starting Cholestyramine therapy, and then has them take it during the entire course of treatment with CSM.

Are there problems with taking Actos? In some people, yes, in others no so it varies person to person. For me, I would not be a good candidate. The function of Actos is to normalize insulin in type 2 diabetics, but those people who have low-leptin levels can have adverse reactions. In patients who are slim they often also have low-leptin (I fall into both of those categories) and it can cause blood sugar levels to drop too low. That’s why some people may not be able to take it.

So what can people like myself do? Luckily Dr. Shoemaker has a substitute route that can be taken. You can take high dose Omega 3’s, EPA and DHA. These are both powerful anti-inflammatory agents. EPA/DHA also plays a big role in reducing cytokines in TNF-alpha specifically. These Omega 3 oils in high concentrations can achieve similar results to the Actos with a much smaller risk of side effects. As a bonus they have many other benefits for the body. You must be using a high quality, high dose fish oil for this to work. It's KEY. I recommend Pure Encapsulations which is an approved option.

For now I am on a 2-3 week course of the EPA/DHA, and intermittently pulsating in Cholestyramine. Hopefully soon enough I can take it daily, and then work up on my dosage of it. Dr. Shoemaker says that those with Lyme disease will feel worse for up to a month or so on this protocol before they feel better. The EPA/DHA and Actos reduces this greatly, but can’t eliminate it entirely. So, if you are one of those people considering giving up, try and stick with it. The end result is wonderful, as Cholestyramine was a staple for me for a long time. I took its benefits for granted, at the time I didn’t realize how crucial it was to me and foolishly stopped when I felt better and didn’t think I needed it. What followed was a slow but steady accumulation of toxins that got me here where I am today. I am now paused on all treatment and waiting to get back on my feet.

Some other side effects of Cholestyramine which are common are acid reflux, which usually subsides in a few weeks. However, if you first mix the CSM powder in boiling water to dissolve it, and then mix it with your juice it helps greatly. Also, this can cause constipation so take it with a good quality magnesium malate/glycinate supplement or a good dietary fiber. And as always, what I write here is not to be taken as medical advice. I am not a Doctor, simply a girl trying to inform all of you on info I find to be important. I hope others can learn from my mistakes, since I am just learning as I go along through trial and error.

Xoxo,
Christina


 Sources: Dr. Shoemaker & BioToxin Wars

Update: I found a really great and comprehensive PDF on the protocol which might be helpful to some of you. I have linked it below, you can both open it and also download it to refer back to.
Cholestyramine Clinical Protocol
File Size: 110 kb
File Type: pdf
Download File

via: Hoffman Centre for Integrative Medicine
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