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2017: What's To Come? Visual & Vestibular Therapy + How Brain Damage From Lyme Disease Has Affected Me

1/2/2017

11 Comments

 
Over the course of the years I have dealt with a lot of symptoms. However, out of all the issues I have dealt with, the most frustrating and life limiting have been my neurological visual issues. I have spoke about this on my blog in the past, but not so much recently. The reason for this was a feeling of uncertainty. No doctor could tell me exactly why this was all happening to me. I knew I had some internal brain damage, but there was no solution presented to me short of: treat the infections and hope it resolves. I did have an incredible visual therapist & optometrist who found two visuals isues I struggled with: Convergence Insufficiency & Binocular Fusion Disorder. I did visual therapy for both, and it improved on the tests, but did not translate a whole lot into my every day life. In some ways it did, but the results did not last. I attributed this to the fact that I still had infections which were affecting my brain. I just kept hoping and praying that as I rid my body of infections that everything else would just fall into place, and the visual issues would improve as well.
So what do I mean by visual issues? Well, I have quite a list of issues and symptoms, and I wanted to begin by listing them all...At least all which I can recall. Granted, a lot of the things listed below are problematic for more reasons than just visual things; I have other health issues which prevent me from doing them, but for the purpose of this I am just listing how it affects me from a visual perspective. I have had these issues for years (progressing with time), so this is a comprehensive list of ways I am affected.

Things which bother me visually:
  • Any kind of scanning. This was most obvious to me in grocery stores or places where I had to scan and look around a lot. I can not remember how many times I ran out of Kroger because my visual senses were so overwhelmed from the scanning & lights that I got in my car and was practically hyperventilating. This also translates to things in my home, but I will cover those more below.
  • Reading. Reading also requires scanning. I lose my place constantly, the words get jumbled together, and I have to use my finger as a guide. This also makes me feel so sick to my stomach, makes my eyes hurt, and gives me headaches. Magazines were the worst. I have an inability to flip through pages of a magazine. I get 1/4 of the way through and I am dizzy and nauseated and struggling.
  • Writing. Also falling in the scanning category, writing is particularly difficult. Copying text is the toughest though, so addressing Christmas cards felt like an impossible task. Having to look at an address and then back at my envelope to write (and going back and forth) is too much. Also included in writing is using my computer to write. Every blog post you see is written in pieces. I do often do audio recordings if I have a thought I want to put on paper, and transfer over. I can't remember the last time I was able to write a blog post in one go.
  • Scrolling. This includes scrolling on my phone or computer. Scrolling through webpages make me so sick.
  • Watching movement on TV. You know those TV shows or movies which have that shakey camera? That's 100% a no for me. Also difficult is action scenes, scenes which show any kind of drastic movement, or ones which pan the camera in crazy ways (such as Dancing With The Stars). The worst is 3D movies. I saw Avatar in 3D many years ago and even though I had my eyes shut half the time I had never felt more miserable. It was tough! Sports can be difficult too, particularly basketball which is fast paced.
  • Playing video games. I used to have a Wii and my sweet brother bought me an Xbox for entertainment purposes, but I never could use it. That kind of movement made me sick in 2 minutes flat.
  • Looking around, specifically in open spaces. I never understood why taking a walk felt like it left me worse off. When I would be outside walking I often felt faint and dizzy. A combination of the light (even on the cloudiest days), and scanning in such a large open space (in comparison to my usual view of my room) is a lot for my eyes. Looking around large areas leaves me overwhelmed and fatigued.
  • Coordination issues. I used to always just think I was clumsy, but now I know it's more than that. I struggle with catching a ball because I have no spacial awareness. I often bump or run into things, and I have cut myself (or come close) while opening a box with a box cutter because of this spacial awarenss issue.
  • Balance issues. When I am standing I am always wobbling around. If someone tells me to just stand up straight and still I will start tilting left and right and have a lack of balance. If I put on heels then forget about it! I will wobble endlessly, and cant find my balance no matter how hard I try. Standing on one foot to balance (say while putting on a sock or shoe) is physically impossible. Closing my eyes to pray in church was always an impossible task. Thank goodness for the pew!
  • Seeing movement. An example would be watching the movement of water. I feel like I will throw up in 2 seconds watching waves of water, even if I am not myself on a boat. Watching a merry-go-round or a train passing by is sickness inducing, and all other things which fall into that category. A flight simulator or those virtual reality goggles would be my own personal hell. If I see motion on TV while I am standing I get so dizzy I almost fall over and can't hold my balance.
  • Escalators and Elevators are an absolute NO. When I would ride an elevator I felt every drop and movement, and when I got off I was dizzy. Escalators are much the same, when I got off I was dizzy and struggling. I would take the stairs 9 times out of 10 just to avoid them. This also goes for ellipticals and treadmills. Anything which moves under me leaves me dizzy and overwhelmed and nauseated.
  • Sensitivity to light. Grocery store lights are the worst, but UV lights are tough, and some other artificial lights as well. It can vary from light to light, and I tolerate some better than others. Darkness is defintiely my friend.
  • Turning my head. This includes flipping my head over, or just turning to the left or right too quickly. I get SO dizzy and feel a pressure on my head. I absolutely can not spin in a circle under any circumstances (even rather slowly), and shaking my head is also a no-go. The dizziness is extreme. This also comes into play when I am in the kitchen and say I am turning from the microwave to the counter, or looking cupboard to cupboard. Any activity where I am doing something other than looking straight ahead is hard. Turning my head back to drink even makes me dizzy.
  • Crowded places. I did not understand this until recently, but prior to moving home I really had an issue with crowded places. I went to the mall to go shopping and had to run out of the store because I thought I was having an anxiety attack. The store was PACKED and the sights, sounds, and crowds made me much too sick. Attending basketball games became impossible, and I remember the last one I went to left me with a throbbing migraine and nausea. The lights, crowds, open spaces and scanning were a lot. Crowds at bars were unbearable and overwhelming. In fact, I stopped going out at all in my last few months living alone. Sometimes I could still manage to make it to dinner, but if we went to a super packed restaurant that would be very tough.
  • Car rides. This was a symptom which came on slowly but absolutely perplexed me. I first realized I couldnt tolerate riding in the back of the car and needed to be a passenger. This helped for a while until I couldn't be a passenger on busy roads such as interstates. Then I couldn't be a passenger at all and HAD to be driving to handle it. Then driving on interstates became too much, and I had to take back roads and drive slower. Then even in town driving was problematic. Then I couldnt go more than a mile without getting sick. Driving was the absolute worst of them all for me. It was more than just nausea. I felt dizzy, I got clammy, I got nauseous, and if I pushed it too far it would lead to a seizure. It was terrifying. I had to medicate with anti-seizure meds to tolerate even 1 mile of driving. I would be trembling and be overwhelmed and afterwards felt sick for DAYS.
  • Air, boat, train travel. Along with car rides any of the other methods of travel are even worse and not possible.
  • Bending over. Bending over to open a box or tie my shoe made me dizzy, especially when coming back up. When bending over to pick something up from the floor I always have to hold onto something for support and do it very slowly because I feel like I am off balance and will fall forward. This includes emptying a dishwasher, or anything else where I have to bend forward.
  • Dancing. For obvious reasons, the movement of anything of dancing is just a big big no.

All of these listed things are difficult or impossible for me. They make me feel nauseated, dizzy, and fatigued. I get eye pain, clammy hands, hot flashes, pallor, lightheadedness, and feel seizurey. I often say I feel "flustered" and like I want to "jump out of my skin." My anxiety spikes and I liken it to being in a room with a million strobe lights flashing while desperately trying to get out of there. These symptoms are overwhelming and all consuming. I ball up and tremble while having paralyzing anxiety and nausea with a queasy stomach while fighting dizziness. Light, sound, smell.. it all becomes too much. It's like someone plugged my nervous system into an outlet. Every single thing feels overwhelming to a degree that I can't properly put into words. I often cry because it is the only release I have, or otherwise I feel like I might explode from how overwhelming it feels. All I can do to stop it is lie in a dark room and just ride it out. It eventually eases, but sometimes it takes hours, and other times I feel the effects for days.

My world feels really small right now. Getting out of bed and taking a walk outside is really intense. The wide open space, the scanning, and the light leave me feeling very overwhelmed by it all. In the house even things like baking or decorating a tree or other housework would cause me to get sick to get visually overwhelmed. I can't flip my head too fast, I can't get on exercise machines, and I live my life moving very carefully. Everything is done carefully so I don't get dizzy, so I don't move too fast, or scan too much. My world feels much too small, and much too constraining. I do very little and feel like I am instantly fatigued and sick from it. Everything I do is limited by these symptoms, and I have to stop and rest and regroup multiple times a day. I have spent years of my life searching for the answers. I primarily consulted online groups for people with Lyme Disease because I thought I might find a kindred spirit there. I didnt. I have always felt very alone in this. Even after seeing endless amounts of Doctors, not one has ever said to me, "Yes I understand this, here is what you have." The best I got was my current LLMD who suspected it was caused by infections and we had hoped it would resolve and other things resolved. That was the best I had. It was the only real hope I had.

This kind of visual sickness was not the typical motion sickness. It was not coming from the inner ear, and Dramamine did not help. Through my ocular-neurologist we discovered an area of brain damage which we suspect was caused internally (by the Borrelia). This Doctor told me that likely was the cause of my symptoms. He said my motion sickness came from a disconnect in my brain between the eye and ear. There was some kind of damage there, and the two did not connect and work properly, leaving me with these visual issues. Again, the hope was just all being held in it maybe just going away one day.

Well, here I stand in January 2017 and I am now embarking on a new visual & vestibular therapy which prayerfully will heal the problem areas of my brain. As with anything, there is no guarantee. There is just a well trained Doctor who heard my plight and really felt like my issues line up with other patients he has seen, and therefore there is hope. Much of what I have accomplished so far has been built on blind faith. This is much the same, because although I check pretty much every box for this condition, the one big factor which sets me apart is the brain damage happening from an internal cause. All the other patients either inherited it or had damage from something external such as an accident. For me it was something which occured suddenly (starting slowly in 2009 and progressing), with no family history, and no outer trauma. So I am a new kind of patient in that regard, and also a new test subject without that same level of guarantee attached to it.

Many patients who have this condition notice that after a while their body starts to compensate to help them. For example the brain will shut off one eye, or create tunnel vision, or other conditions such as that. It is a survival mechanism because motion is too difficult to bare. The body slowly closes the patients world down by reducing motion as much as possible on it's own. I believe this is why I also developed Convergence Insufficiency (which I was diagnosed with a couple years ago). Convergence Insufficiency is when the two eyes can't work together and the brain shuts down one eye to compensate. These patients have spacial issues, often bumping into objects or not understanding how close things are to them in the world. This was and is a huge problem for me, which I now strongly suspect developed as a defense mechanism. It is also why it improved a bit with CI specific visual therapy, but then worsened when I stopped. The root cause itself was not solved yet.

The most interesting part of all of this (at least for me), was how it affects the autonomic nervous system. This condition keeps the body in a constant flight or fight mode. The autonomic nervous sytem becomes revved up, and stays revved up, and it puts a huge strain on the body. If you have read my blog for a while you know how much trouble I have with my autonomic nervous system and how my body stays in overdrive and I am very overly sympathetic dominant. With therapy, this has improved for people, and I am prayerful and hopeful that will be the case here as well.

I will begin daily extensive visual therapy for this condition. It will be hard. It will be uncomfortable. I will likely be blogging on here much less, and be much less present so I can devote myself to it 100%. Some patients get worse before they get better. Most all patients feel terrible during the visual therapy, and I fully understand and accept that it will be tough, but I am determined. And I pray that this will help. All that I can do is try. I plan to live in the moment and take each phase step by step. I will be blogging all my experiences on a separate sub blog, which I will make public when I am further along/finished. I havent decided just yet when I will put it out there, mostly because I want to be sure of what I conclude before I make it public. It will be more of a tool for me to look back and see how things do or don't progress. I will also write more about this condition on that blog, but for now I don't want to invite too many questions (there is very little about it on the internet), by calling it by name. Mostly because I do not know if it will work, and I would hate for someone to find my blog by it's name and either 1. get unrealistic hope, or 2. get discouraged. I hope to be able to share more with you all on it's "official name" and diagnosis in the future.

For now I will sign off and wish everyone a very happy 2017. I will blog and be on social media as often as I can, but if I don't reply to your emails etc then this is why. I also ask for prayers in every which way. Prayer that its successful, prayer that it's tolerable, and prayer that this is what I have been so desperately searching for.

Much love to everyone

xoxo,
Christina
11 Comments
Issie
1/3/2017 10:14:05 am

Please make sure you have your MCAS and POTS well under control. Both can play a big part in your symptoms. Clearing mold, parasites and as many chemicals from my life - helped my eyes. If you are not already gluten, dairy and sugar free - this has been a big help to me.

Hope your treatment helps.

Issie

Reply
Amy
1/6/2017 01:43:09 pm

It sounds so horrible. I'm sorry you have to go thru that. You will be in my heart and prayers while you go thru this new therapy.

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nanette
1/6/2017 06:57:46 pm

Thanks again and always, Christina, for your lengthly post. Praying for you now...for success with this new therapy.

Reply
Bazia
1/10/2017 10:22:22 am

Prayers that the new therapy will be just what you need and gentle and easeful! My new year is beginning with a renewed vertigo experience. I suffered daily for a year and a half in the beginning of this journey back in 2000. I just pray that this will pass, it adds such a major component of suffering to the already mass of symptoms. Thank God you have someone who is willing to help. I feel like I'm at the end of another Dr patient relationship as they have nothing to offer and are not willing to learn to help me. I've exhausted all the potential medical care I can afford, had always saved conventional as a last source of hope. I know! What dilerium that was. Bless us all.

Reply
Gwen
1/23/2017 11:36:09 am

I just heard your interview on lyme ninja radio. It was great and inspiring, you sound so positive. I've had lyme for 15 years now, diagnosed after 13 years. Last year my breast cancer was misdiagnosed, too. This was even after a surgerical biospy. I have an aggressive form. So far the treatment since Sept has been working. I'm down to two more low dose chemos, then surgery soon. I'm pretty positive the lyme had something to do with it, with the high inflammation. I led a very clean life for 8 years, away from chemicals and living in the woods, drinking clean water, and organic foods.
The main reason I wanted to seek out your blog and write is to tell you my faith in the Lord has gotten me through all to this. But most of all I wanted to share that the author Sarah Young of Jesus Calling has/had lyme and she thinks she got it in TN, towards your neck of the woods. Appears we have Sarah in our "club" now :) I wish I knew more of her story. Sounds like antibiotics were a big part of it.
All the best for you.

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Lori Geurin link
2/2/2017 05:24:13 pm

Praying your new therapies are successful, Christina!

I've had a lot of visual and auditory issues due to the Lyme. And every day it's different.

Hugs.

Reply
Anna
4/8/2018 11:02:15 am

I just want to say thank you. This post is literally the closest, most relatable thing I have seen after 3 years of struggling with much of the same. I am in vision therapy as well and while the tests show some improvement, I am not noticing much on a day to day basis. Have you noticed a certain type of therapy/vestibular work has been helpful? In conjunction to a certain lyme treatment? Thank you again for your insight!!! -Anna

Reply
Christina
4/9/2018 01:47:54 pm

Hi Anna!
As far as Lyme treatment goes each person has a different protocol that works for them, so I just recommend that you do what your Doctor recommended because that will likely be the best bet for you in that realm!

In terms of visual therapy, what I did was meet with an eye doctor who does visual therapy & they ran a whole slew of visual tests on me and then gave me exercises to do based on that. It isn’t really a specific program per say, it’s just one that they put together themselves. I’m not sure where you live if you might have someone nearby who can do the same. If you email me we can chat a bit more in depth: cskova01@ladyoflyme.com

Reply
Rob
5/1/2018 02:04:04 am

Hi Christina, I have recently been doing searches on Neuro Visual Processing disorder and through that have come across your website. I have had Lyme disease for roughly 7 years and have had many symptoms similar to yours. I have tried many different things over the years, live a very healthy lifestyle and feel I am much better in many ways. What has not gotten better are my neurological symptoms. Much of the balance/vertigo issues have gone away, however the neurological issues are so bad that I am barely able to do any office work and have been struggling to keep my business running smoothly. What I have found out is that most of my issues that I have left are from Neuro Visual processing disorder. About 1 week ago I went to an optometrist that helps people through this and now within 1 week I am able to work on a computer and perform other tasks within my office that I absolutely could not do before. I know that you had said that you have done the program but it didn;t translate into everyday life. The program that I use is called HTS iNet "Computerized Home Therapy System" which I bough through my optometrist and installed in my home computer. The cost was $550. In addition I do eye excercises at bateseyeexcercises.com. You make a donation (any amount that you can) and then you can download the charts and use there excercise generator which gives you a list of excercises based on how much time you have to spend doing it and what your eye conditions are. I have the convergence issues/ slight astigmatism and light sensitivity that can be pretty bad. My eyes actually felt worse, much worse during the first couple of days, but now much better. Strange thing is my vision is 20/20 and did not have any blurry or double vision. Something else I have also done is really educated myself on EMF's especially from wireless like cell phones, tablets , etc.I believe that is a significant part of the light sensitivity as well. Hope this wasn't too long and you can find something helpful. Just want you know I think you have done a brilliant job putting together your website , your blogs are comprehensive and you are very articulate. I think your site will really help people, keep up the great work. Rob

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Alexandra
1/13/2019 04:59:53 pm

First of all thank you for sharing your horrible experience!!!! I can relate to you very much!!!!!! Please read my message...

I do not know how to start this huge text for which i am sorry. i am having problems in concentrating and this will make me jump from one thing to another...

I currently have all kind of symptoms: numbness, burning, itching sensations, head pressure, pins and needles, buzzing feelings in my left hand and leg... sometimes the skin feels burned like sunburn and i can’ t stand clothes on it, i have itchiness and Paresthesias... i have GERD, and i suffer of stomach pain, even 1 h with the car makes me dizzy and sleepy, i suffer of fatigue and i have strange sensations on my brain, my left year get’s stuff and i have constant tinnitus ...sometimes i get stomach problems and bowel movements

now for whom is in the “mood” to read the beginning of these horrible things...

My horrible journey started 2 years and a half ago, 2 years and a half ago my real life was taken away from me.

In 2016, i came from a trip from China, then two days later i had to travel with the car around 600 km, Reached at the destination and next night i tried to put myself to sleep and the moment i closed my eyes, the whole world was moving around me, so bad that i went to vomit, it ws my first experience with vertigo. I barely could fall asleep, it was worse when closing my eyes.

Next day i woke up more tired than when i slept, i could not concentrate, i was dizzy, i was seeing everything more far than they actually were, so i decided to go at the local hospital there, i want to mention that in China i started having horrible occipital and cervical pain, i could not sleep at night, also i had stomach pain for which later i found out i have a hyperacid gastritis. At the hospital there they made routine tests, all blood tests came fine so i came back to Bucharest where i had to make Brain MRI, cervical MRI.
All came back good except a brainstem cavernoma of 6 mm, and some cervical degenarive disks. Been at neurologists in my country also in Germany, all of them said i was born with this cavernoma and it is just there giving no symptoms like it doesn't exist as it was not compressive and the symptoms are not related to it.
I felt weak, vertigo, dizziness, unable to do things myself, started having panick attacks and anxiety, doctors had no answers.

I did all blood tests i could think of; Lyme disease (W.B Borellia), Hepatitis, MRI's, ultrasounds…so on so forth..
all came back fine. I did all kind of ultrasounds, medical exams, ENT... so on... NOTHING!

i started to experience nose pressure, like a tightness on top of the nose not inside, it became worse and worse, and also i could feel some veines on the root of my nose twitching.

I went to another trip, and after 1 day of car ride, in the night i started again feeling dizzy and vertigo, then 4 months i had vertigo everyday.
went to another doctor, made massage, acupuncture, made me some plant injections in the cervical, did this treatment two weeks, and i could sleep at night but only without pillow.

i had three brain mri past 2 years, last mri shows my cavernoma is 4,5 mm.
i can't travel by car, train or plane, as i feel all movements much deeper than anyone else. i can t stay in stores as i can t concentrate my eyes, i feel a tiredness in my eyes all the time, i can t do usual small things like cooking cause i feel my whole brain is spinning inside my head.

I had eye exams they came back fine but i can’t see paterns i feel sick, sometimes my vision is shimmering or balancing, i hate to see something moving, makes me sick...

i went to a vertigo clinique, they sad on the left inner ear my christals went out, so i have a peripheric vestibular syndrome, i had treatment and vestibular rehabilitation.


i feel bad from my galldbladder (analyses came fine), my eyes and nose (no sinusitis), i feel the blood doesn t come to my brain, i have tinnitus, i feel something it is wrong with the nerves of my face and head because i sometimes can press on my head with my fingers as the pain goes everywhere, sometimes i can't touch the pillow with my head as i feel a pressure on my head, i feel weak and tired, sleepy and drowsy, i hear popping noises from my nose (even the person next to me can hear them), i can t bend down to take something from down as i feel the whole blood comes in my face and it feels weird.

i experience thousands of symptoms and they are not in my head. i can't travel anymore, after a car ride or plane ride i feel horrible, one week can t move from bed.
i can t go on a treadmil, or do anything which relate to movement as after i feel like i am constantly on a boat (same thing i eperience after walking long time, or plane ride, or car, or train

sometimes i experience horrible cervical pain, i can t stay in a queue line as i get dizzy, i feel pain when moving my eyes. i feel bone pain on my head and face.


Somet

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Alexandra
1/13/2019 05:46:46 pm

This is the continue of my message=>

Sometimes i used to wake up in the morning more tired than when i went to sleep, my whole flesh was hurting like i have been beaten...

My joints don’t ache and they don’t get swollen. Only my calf gets swollen sometimes but they told me it could be thrombosis... the skin on my hands is full of pins and needles and burning and itching, and all over my body including chest, cheecks, legs and all. I feel like for some seconds someone pours boiled water on my legs... in small parts of the legs, like a hot liquid...

doctors have no answers for me, i am 28, i want to have a family, i want to have a baby but all i can do is sleep on my belly with my head turned on one side or the other.


… i have visual vertigo and before vertigo starts i see the image in front of me shimmering and balancing .. specially after travelling...

i have high level of homocysteine and sometimes my left leg feels like a brick, heavy and swollen, i risk of having blood clots

i need take high levels of vitamin B12, B6, B9.

Last month i repeated one time more my WB Borellia analyzes... other laboratory... guess what... came back negative AGAIN, BUT what makes me have questions until i go doctor again, is that P 41 Flagellin came back POSITIVE, anti human IgG came back POSITIVE and “Control” also came back positive... these three came back positive.

What does it mean that P41 Flagellin came back positive? Is it possible that i might have a parasite? Is it possible that i am not crazy and i don’t imagine? I can t function, my life is a total mess, everything changed since 2 years and a half ago!

I have to mention that when i was small i had played with animals in the country side and next morning my grandma found me with a thick stuck on my eyelid and she took it away. But i had no test for lyme, in my country people had no idea about this.

Is it possible that i have this in my blood since long time and maybe something triggered it (hormonal changes or God knows what)? Is it possible that that s why it s difficult for them to find it in the blood?

I am sorry for the long message... i am just very very desperate you guys...:(

I am fed up to be made psychosomatic by all doctors!!! It is not just in my head!!! That Flagellin p41 that came back positive says something!!!!! I am not crazy:(((
Also the Anti-human IgG which came back positive ... these can t be normal!!!:(((

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