A Few Good Days!

Just a little update. I have had a great three days! I felt sick on Christmas day and very dizzy from the incense in church but once I was out of there and got some air and food I felt much better! I was able to clean the entire house from ceiling to floor and still feel great!!! I have been super itchy which usually means I am pretty toxic so need to detox a bit more, but other than that it hasn't been effecting me much. I even got 11 hours of sleep one night!! I got my bicillin injection today so we will see if that effect me tomorrow but so far so good! SO nice to feel good!

A Few Good Days!

Just a little update. I have had a great three days! I felt sick on Christmas day and very dizzy from the incense in church but once I was out of there and got some air and food I felt much better! I was able to clean the entire house from ceiling to floor and still feel great!!! I got my bicillin injection today so we will see if that effect me tomorrow but so far so good! SO nice to feel good!

Swimming From Night Sweats

My night sweats have been off and on but been bad over all again. This night was particularly bad and my hands looked as if I was swimming all night long. Night sweats are an odd thing! I went on a new drug to help but had to stop because it was too intense. Hopefully I can go back on again soon! Babesia is causing me a lot of laundry! :-)

Our Story - Life, Love, Lyme, and Faith

This is really, really hard to watch and children should not watch it but, it shows the real side of lyme and what it can do to a person when they dont get the help they need. Its a long road to recovery and this young couple shows how strong they have been. Its been a long road for me and I havent been as sick as she has. She is one strong chica!

Dear Santa...Love, Me.

A fellow lymie wrote a great post. Here is the link-

http://infectiousoptimism.blogspot.com/2011/12/dear-santalove-me.html?showComment=1324482358643#c950191572919133366

Bicillin Injection #7

Had my 7th injection today. The needle went right into a vein which can be really dangerous. If the nurse were to actually inject the bicillin into the vein, it could kill me. This is why when the needle is put into the skin they aspirate the syringe to see if blood comes into it. If so they know they have hit vein and need to stop. Thankfully she is very educated and a great nurse. So, she took it out right away and had me put pressure on it while she got the blood out of the syringe and put a new needle on. Second time we were clear and good to go. So today I got poked two times and have two battle wounds but glad it wasn't worse! Onto my 8th injection on Thursday!

The Rich Man's Disease

I have heard it 100 times before. Lyme Disease is a rich man's disease, and it is true! I am so frustrated and angry with the politics of lyme. Why is it so hard for the medical field and insurance companies to except??

Well for one, it's a huge liability for doctors because there are so many treatments, long term treatments, various drugs, insurance companies coming at them left and right, uneducated cruel, hurtful people deliberately trying to shut them down , etc, etc.

Why won't insurance companies recognize it? Easy, because all of the other disease out there that could be lyme-MS, Chronic fatigue syndrome, psychological disorders, arthritis, heart problems, liver problems, chronic pain, Alzheimer...I could go on and on, the list is long-would then be the insurance company's problem and they would have to cover these expensive long term treatments that would cost millions of dollars to treat. Instead they basically say if you need more than 2 weeks of treatment then you really don't have lyme and they will not cover you.

It should not be like this! I should not have gotten to the point that I had to quit my job, we should not be loosing our house, I should not have to uproot my daughter from the only things she has known, we shouldn't have to move in with family at our age. I SHOULD NOT HAVE TO THINK ABOUT STOPPING TREATMENT!!!!! We are broke, and many people have helped us. We are to the point where I may have to cut down my treatments a lot or stop all together. We just can't pay for all of this anymore. I SHOULD NOT BE UP AT 1AM BECAUSE I CANT STOP THINKING ABOUT THIS. I WANT TO GET BETTER!!!! I want to run more than the 20 feet with my kid with out being so out of breath and feel sick. I want to have the option to have another child if I want, I want to be able to sleep all night and actually wake up refreshed, I want to be able to enjoy a party, holiday, get together with out panicking about the cost of whatever is going on. I am making great progress and my doc thinks I will see great results by this next summer. I AM SCARED. I don't want to down slide. I remember those days clearly and never want to have to call 911 again because I thought I was dying and have to take an ambulance ride to the ER. I don't want to go back. SO I SAY SCREW YOU TO THE POLITICS OF LYME DISEASE AND TO THE SELFISH UNEDUCATED JERKS THAT MAKE THIS SO HARD. YOU ARE TAKING INNOCENT LIVES AND IT IS NOT OK! WHO DO YOU SEE WHEN YOU LOOK IN THE MIRROR?

Bicillin Injections

Icing before the injection

What it looks like. It's a thick paste

After shot

Walking the halls afterwards

I am finally filling you in on my bicillin injections! I think I am up to 5 injections now. I get them twice a week. The process started out drama filled.

My out of town doc wanted to me start the injections after I had been on my new oral drugs for a while, so I called my local clinic and scheduled the injections. Went in as scheduled and they refused to give them to me. Said out of town doc and local doc where not on the same page. Local doc was not aware we were actually going through with the injections and was not aware I was coming in that day. She was supposed to be informed by the receptionist and by the out of town clinic and was not. My chart also stated I was allergic to penicillin, which is in bicillin injections. So I contacted out of town clinic and local clinic to make sure we were all on the same page. Out of town clinic ok'd the injections but local clinic wasn't sure it was a safe idea per the allergy scare. I had taken amoxicillin a long time ago for acne and puked my guts out violently and quickly after taking the meds. Which is what cased the red flag. Like the nurse stated, it probably wasn't technically allergic reaction, but do we want to find out when you are on the table with bicillin being injected into your body which sticks around for a few days and then your throat closes up and we have to jab an epipen into your leg? Mmm, no thanks!

So onto the process to find out if I was allergic. I had to call my old peds clinic from 1oo years ago to see if they had any records from when I was little, of course not, they are destroyed after 10 years of becoming 18. Called the dermatology office and they couldn't verify if that was an allergic reaction or not but the nurse said she thinks it was. I reported back my findings to both of my clinics. Out of town clinic said the only way to be sure was to get a skin allergy test. So I called the allergy clinic to schedule a test. Of course I couldn't get in right away. In the mean time, my mom had taken off work to come with for my first injection in case I had a reaction. Well that went to crap and she wasted one sick day. Then the second time around was coming up and that's when I found out I couldn't get the allergy test right away. And, yet again, my mom had taken off work to come with me for the second try. I didn't want her to waste another day since she is a teacher and its a pain to miss days. I called my out of town doc and explained the situation. Doc there said he thought it would be fine and got in contact with local clinic. At this point three docs all had to be on board and the nurse that would be giving me the injections. They finally all ok'd it and I was good to go to get my first injection before the allergy testing. By this point I was scared to death I was going to have a reaction and they were going to have to jab an epipen into my leg and call an ambulance. They decided it was best to give me a half dose just in case. Thank god things went smoothly and it has been smooth sailing since. Phew, what a pain in the butt!!

So right now I have a nurse injecting one shot two times a week in each butt cheek! My daughter is oh so lucky and gets to come watch each week! Oh course at home see has to reenact it and I get more "shots" at home too! My little doctor! Last week was the first week it started to build up and I was getting nice "goose eggs" in the rear. They are solid and painful! I am thankful I get a week between each shot on each side or it would be really painful! Most of the time I don't even feel the needle go in or the bicillin until we are about to the half way point. Then it starts to burn a little or sting but if it's bad the nurse slows down which helps a lot. I am normally pretty numb and iced up which I think is a big help! Then we walk the halls for 10 minutes to help the meds move around and not gather in a lump and we are good to go.

As of now, per my doc, I will be getting bicillin injections twice a week for a minimum of four months. I have no idea how we will pull that off financially though. That will be in the next post!

You Can't Break Me!

Dear Lyme, babesia, and bartollena- you will not win. My body is your holding house and you are unwelcome guest's. I will fight until YOUR death. You will not bring me down with you. I am a rockin, strong person and you can't break me!

Sleepy and Herxing

This is me these days, SO tired and drained. Pretty much fall asleep where you land. I feel like I got hit by a bus. Lot's of bugs dying! I will update when I get a bit more energy

Bartonella Treatment=A Lot of Die Off!!

Just a little update-I am on a higher dose of my bartonella treatment now and feeling it! I have horrendous head and neck pain, which includes-head, face, teeth, ears, neck. And upper back is very tight too. I didn't notice how tight until my chiro and massage therapist started pushing around on me. The worst is where my head connects to my neck. Horrible pain and not much has helped since Friday. I have been trying different pain meds and so far Advil seems to be the best one. I have been following doctors orders and rotating heat and ice and detoxing, still no relief. I had a short lived break from the pain when I went and got a 1/2hr massage but it was short lived and the pain came back worse. It usually kicks in full force when it's time to take another dose of my meds and they kick in. I was posting on facebook and a friend mentioned she uses icy hot a lot. I didn't even think of it, but I have a natural version of it called Biofreeze. I rolled that on my neck this morning and it helped a lot!

All the pain is herxing-so much die off at once in my body that it turns into toxicity and pain. There isn't a whole I can do other than detoxing as much as I can and trying to find what works best for the pain. It's part of treatment, not fun but I don't want to stop the treatment. I want these bugs OUT of me! I start Bicillin injections on Friday so I will keep you updated on that also!

I Am Thankful For-

Even though I have had a rough go the last few days I am still thankful for how far I have come and other things in my life. There is no doubt that the medical field has failed us lymies but I am thankful for the other advances in the medical world out there-

Today I am thankful that the Newborn Screening labs came back on my daughters 3rd day of life. She was diagnosed with MCAD, a metabolic disorder. She was dying and we didn't even know it. Without this test, she would be in the ground and not in our arms. I am SO thankful for her and advanced medical testing.

What are you thankful for today?

Lyme Disease Gives Pat Kessler A Reality Check « CBS Minnesota

Lyme Disease Gives Pat Kessler A Reality Check « CBS Minnesota

Thumbs Up!

Everyone has been asking me how I have been so thought I would post an update.

I am on 3 powerful drugs right now and started treating Bart! The first week I felt like I had morning sickness most days and then it would tend to clear up a bit after lunch. I was also soooo tired and drained. I felt like a bus ran me over and then a truck came by and did it again. This week has been so much better. Yesterday I felt good ALL DAY LONG!! Awesome!! I am getting rashes and itchy at night and had to stop a drug that was supposed to help with mood/rage and help me sleep. It did the opposite and kept me up at nigh but did a great job with the mood part of things. I can't tell if I am allergic to a new food or if the new drug is giving me rashes. Called doc and he said its a side effect of the new drug. So benadryl will be my best friend. I am also going to try and take a half a dose in the AM and the other half a dose in the PM of the pill that is supposed to control the lovely Bart rage and insomnia. Hope it helps. I know the hubby is glad I don't get rage anymore. It's a scary thing when it pops up out of no where. So, overall I am doing awesome and so happy to be feeling myself more lately! I hope it continues!!

Zoned Out and Scared!

I start my brand new treatment for Bartonella tomorrow. I haven't treated Bart at all yet so I am expecting some pretty harsh die off and herxing. Usually when I treat something I haven't yet, that's what happens. At least if it's not as bad as I am expecting, then I get a nice surprise. We are starting out pretty slow so hopefully that will help too. I am also back on some lyme treatment and Babesia treatment I had to stop for a while to start a different more powerful Babesia drug to try and hit those bugs extra hard. I am done with the course for now, so I am back on my other two drugs. I can tell it's building in my system. Today especially I feel really zoned out and like a brain fog zombie. I feel like my body is slooooowing way dooooown this morning like I am super drugged and really in a deep fog. My brain is not working the greatest today. Trying to keep up with a 4yr old should be interesting. Once I start my new drug tomorrow I will be on 3 powerful drugs and in two weeks I also start Bicillin shots. It's kind of a crazy month for treatments. Let's hope they kick some lyme butt!

What Are You Thankful For?

It's almost the month of giving thanks. It's hard to be thankful when there is so much negativity going on in my body and world right now, but I have a lot to be thankful for. I am thankful for--

• My loving husband that never stops loving me and is stronger than ever through this battle
• My silly 4 yr old that keeps me on my toes
• Food in the fridge and clothes on our backs
• Our current house and the family members house we will be moving into
• Two working cars
• Three great years running my daycare with loving children
• Family and friends that would drop everything to help me, and have
• All the awesome doctors that I see and my daughter see's
• My therapist to help me through the really rough days when I don't see the light at the end of the tunnel and has never given up on me
• Our very knowledgeable Realtor and lawyer that are helping us through this rough patch and only looking out for our own well being
• Now being able to just focus on getting healthy and taking care of my daughter with out anything holding us back

Trying to Except Things

I am sure my situation sounds like a million others out there-person get's sick, looses job, looses house, has to go on food stamps, use the food shelf and has to rely on others for her to survive. It's more common than people would like to think.

However this is not what I expected out of my adult life. We have had so many challenges in our 8 years of marriage it's amazing we are still together. It feels and has been never ending, it's so draining. I am just thankful my daughter has made it a whole year with out having to be admitted into the peds ward for the millionth time. I am glad she is at least healthy for now. We have made it through so much already that I have no doubt we will make it through this one and come out stronger in the end. But right now, it doesn't feel like that. It's hard to except all the new changes that have all happened in a very short amount of time. Yesterday was my last day doing home daycare. I had to say good bye to all my kids. They were my family and I worked hard to open my home to them and make them my family. It's upsetting to let them go and upsetting my health has caused all of this. I know it is for the better and now I can focus on my daughter and on healing but I feel lost. I am used to go, go, going. Lyme has slowed me down A LOT but now, with out working, it's going to be a bit of a shock. I have worked my whole life.

We still have a lot to do. I am working on clearing out all of my daycare items and thinning out the house so we won't have as much to move once it sells. We rented a huge dumpster to toss a ton of things. Once we move we will have more changes we will have to get used to. We won't have our own home anymore. We will be living with family and having to adjust to that. I hope all of these changes are for the better and we can all have a healthier life. Our credit will be shot for 3-5 yrs since we are selling our house short sale. My hope is that in 3 years, I will be healthy, my daughter will be happy and healthy, my husband will have 1 normal 40 hour a week job and he is healthy and that we can afford to have a nice home to ourselves! Time to start working on that goal...

Lyme Disease Twitching

I have been twitching a lot lately. I caught my arm on video

You Know You Are A Lymie If...

Yup, it's one of those posts again! You know you are a lymie if--

You turn on the bath water to give your pet a bath and then run upstairs quick to grab something. And then in 2 seconds flat you forget you turned on the water! Good thing hubby was home to turn it off. Our pet Forrest had a very full bath this time around! He didn't seem to mind!

Many Changes

There are so many changes happening right now, all of which are out of my control. I work running my own child care in my home. I have made it as long as I could with this terrible disease and just can't do it anymore. I am getting worse instead of better and I know it is because I work long hours in a very demanding job. I love my job and it is always what I wanted to do, this is so very hard for me. It isn't fair to the kids anymore and it isn't fair to myself if I can't heal. I have no doubt I wouldn't stay alive if I continue my life like this. I would continue to go down and not heal or end up taking my own life in a moment of brain fog or depression because I an trying to wear too many hats and can't do it anymore. As hard as it is to make the decision to quit my job, it really is my only option to heal and beat lyme. It's not fair to my child and husband if I don't take control and get better so I can be a better mother and wife. They have had to deal with so much and it's not fair to them, I especially feel bad my daughter has to deal with the effects of a sick mother.

A lot of people don't understand because you can't see how I feel. I am sure I look sick sometimes when it's bad but a lot of the time I am able to hide it and put on my happy face. I have to hide it in many situations to get by, so a lot of people wouldn't really know I was sick unless I tell them. Or, when I am bad I try not to go out so they don't see my really sick days. On the weekends I sleep almost the entire weekend to recover from the week, so then again not many people see me. Of course I get out on my good days to enjoy life and want to see my friends and family so they tend to see me on my good days. My really close friends have seen me on my really sick days so they know how hard it is. It also effects the brain so they can't see that. Such bad brain fog, depression, irrational thinking etc. My brain fog causes me to become dyslexic. Math..I don't even try! It's a good thing I work with young kids that can't do more than basic math and can't read much haha!

I have a week left of my job and then I have to say good bye to all my daycare kids. They are my family. I am not looking forward to this day, it's so sad for me to say good bye to them. I never thought this day would come, I thought I would either be better by now or be able to tough it out. In addition to having to close my daycare, we will loose our house. There is no way we can live on one income, pay for the mortgage, pay for massive amount of debt and food. I know it's not my fault and I can't help I have lyme but it sure feels like my fault. I am the one causing all of this. We can't keep our house that we worked so hard to get. My daughter has to be uprooted from the daycare, her house and everything she has known. We will move in with family and hopefully be able to avoid bankruptcy. Although that isn't looking good either. How could we have gotten to this point, all from a stupid disease?! A disease that is so political and causes so much controversy, that isn't well know about, the medical field is so under educated about, that isn't covered by insurance, that you have to travel across the country to find a doctor that knows what they are talking about, that causes families to break up, that causes people to take their own lives because they can't handle no one helping them anymore and the disappointment. How do so many people(more than HIV and West Nile combined) have this disease and the medical field is not educated enough to help us? It makes no sense. I hope the future is brighter for people with lyme, the more we can educate the better.

The only positive in all of this I can find is that my family loves me and I love them and as long as we are together that's all that should matter. As long as we show my daughter all the love we can and teach her about life, then she will be happy and live a healthy life.

But You Don't Look Sick

A lyme friend posted a posting that I think more people need to read so I am re-posting it! Click HERE to read it! A lot of us lymies feel like this. It's so hard for others to understand that even though you don't look sick, that you may feel like hell on the inside. I agree that I would rather not look sick though! It's nice to hear people say you look good even though you don't feel good. A lot of lymies get frustrated with that. Not me, bring on the compliments haha!

I Am Back and Starting New Treatment!

My treatment and improvement has been at a standstill and at a decline for a few months now. So my doc and I discussed it and decided it was best for me to fly out of state to go see one of the best lyme doc's out there. It was a lot of planning for my daughter, my daycare, and traveling, paperwork, not to mention the cost(ouch). But at this point, I don't care what I need to do, I just want to be healthy again! So my hubby and I flew out to see what we could find out!

The new lyme doc was great! He was so kind, patient and funny. He spent two hours going over everything and explaining a lot of things to us. I was glad my hubby was there to learn also. Right now I have been treating Lyme and the co-infection Babesia. He has no doubt in his mind that I also have the co-infection Bartonella. I have been wondering for a while if I also had that one. I seem to fit the profile and it would make sense if I am not getting better that there is something else in my body that needs to be treated. He also did muscle testing which was really interesting since I have never had it done before. I also thought it was a crock and my husband is pretty hard to convince of things like that being accurate. As far as how my body reacted to the testing, it seemed pretty accurate to me. It was pretty cool to try it. That test also proved that I have a large amount of bartonella in my body to attack. SO-the plan is to start 4 new drugs and start Bicillin shots also. From what I have heard they are very painful, but again, I don't care what it takes anymore! If I have to be hooked up to a million machines, take 100 pills a day, and stand on my head, then so be it! ;-) I just took my first dose of my new meds so hope I don't herx too badly. I like how my new doc phrased it-"You have 3 big bears in your body and when you go to kill 3 big bears you don't bring a BB gun, you bring out the big guns to take them down. That's what we need to do now, we need to bring out the big guns and kill those bears." That made sense to me and it is time to KILL the 3 BIG BEARS! I have had enough!

Hug!

Give your pet a hug, they love you no matter what! I love my buddy Forrest!

The Attitude for Gratitude

It's so easy to get lost in the world of Chronic Disease. There is something everyday, all day. Pain, head aches, dizziness, insomnia, weakness, nausea, drugs, etc and it's so easy to just fall into that routine and zone out and be depressed about it and let it take over your life.

I feel like I was put in my place tonight and it was needed. Someone told me-you are waiting for your life to start. This is a chronic disease and we need to figure out how to live with it. People can live their entire life with chronic pain. When she said that, all I could think and say was-no, I am waiting for my life to end. Then I thought, oh my god, I am waiting for my life to end. I am so sucked into this grueling disease that I am truly just waiting for it to take my life. Just as simple as that.

And I guess I really am waiting for my life to begin. But the fact is, it has already begun. It's just not the life I wished for. If I am going to survive this disease then I need to start living as if my life matters and try really hard to move forward and not let this disease take control of me or my life. Easier said than done!! Between the physical pain and the effects and the mental pain and the effects of lyme and treatment it's hard enough just getting out of bed in the morning. If I didn't have my daughter or husband, I wouldn't be here. And even with them it sure is hard to stay here (alive) sometimes. It really truly is the most grueling, physically, emotionally draining and depleting disease and can completely take over your life in a flash. It's hard to get through it to say the least.

Having said that, I have so many things to be thankful for and I am much better off than a lot of my lyme friends. I just need to remember that when I am beyond depressed and in a dark hole. I need to focus on gratitude. I have so many friends, family, new lyme friends, support groups, on-line groups, ect. I think the key is to make sure you have that support so it isn't so lonely. So, that's my goal. Trying really hard to focus on the ATTITUDE FOR GRATITUDE!

What's Going On?

Am I herxing, relapsing, really toxic, needing to change drugs?? I have no idea but I think I am toxic. Things have been rough for a while now especially this week. Yesterday I was puking my guts out, weak, numbness in arms, legs and lower lip, semi high blood pressure for me, twitching and the list goes on. Today I was scared to take my drugs because of how yesterday went. I finally forced myself to take my 1st dose around 4pm, waaaay too late but at least I got it in. An hour and a half later I went down hill. I was at Target with my daughter because I felt fine when we left the house. Not long after we were there I started to feel my body go against me. Very light headed, dizzy, felt like my blood pressure was tanking, really weak, left arm was mostly numb, foggy, couldn't focus, hard to walk, then when I got home the twitching started and my neck was having a hard time holding my head up, weak and twitching. I am starting to feel a little bit better, good enough to type now. A couple of my friends think the way I am detoxing right now maybe isn't working anymore so I am overloaded with toxins. I am looking into different ways to get the toxins out of me and was going to go get clay tonight but then this hit! So tomorrow it is!

I am feeling pretty lost in this fight. It's been 15 months now, why am I not better? Why do symptoms come back? Why is it so up and down? Why, why, why. It's such a struggle to stay on track with taking meds 5 times a day, getting enough sleep, eating the proper meal and certain foods with certain meds and an empty stomach with other meds, remembering to detox, trying to stay active to keep the toxins moving out of your body, trying to work a full time; very demanding job, being a mother, being a wife, being a friend, keeping up with doctor appointments, chiro appointments, acupuncture appointments, and soon to be massage appointments, keeping a medical journal, keeping up to date on anything lyme related. It is exhausting just living!

I am planning a trip out east to see a pretty high up Lyme doc that my doc knows. I will be going in the next couple months in hopes that he can help me heal a bit easier. We shall see what the future hold for me, I am thankful there are docs that really know their stuff and are willing to treat so many of us!

Weak Muscle Tone

This last weekend I had a lot of trouble with weak muscle tone. We have been trying to tackle some things around the house we have put off long enough so had to hit up a bunch of hardware stores to price check. Which means a lot of walking on hard concrete floor in huge buildings. My body was not happy! I decided to finally put my pride aside and give in to the pain and wobbly legs and use the motorized scooter they had at the store. My daughter sure had fun riding along. I felt weird using it and of course got the pitty look from a few people. There eyes and face said it all-"oh, sad, I wonder what is wrong with her, she is so young and has a young child with her." I hate that look, but I do look young to be using one. I tried to ignore it and go on my way. If only they knew how hard it is for the majority of the lyme community to get out and do normal things and NOT pay for it big time. I want the look that says-"way to go, you are getting out of the house and living your life!" I was glad I used it though, it saved my legs and energy for a little while.

I am going to be "walking" in the suicide prevention walk in September in remembrance of my cousin that took his own life and because SO many Lymies struggle with suicidal thoughts or actually end up taking their life. Such a hard, lonely disease for many. I am hoping I can find someone to sponsor me and let me use a scooter like that! There is no way I would be able to do the walk otherwise and it's important to me that I am there!

So those of us that need to use a scooter, wheel chair, etc from time to time or all of the time-ignore those annoying pitty looks and do it for your health!! I won't wait until I am in so much pain and so weak the next time around!

Full Force and Feeling It!

I am back on Mepron the yucky yellow paint med again. So breakfast is my mepron, my pile of pills and something high fat which is usually almond butter because most other fattening things gross me out.

Today has been up and down but as I write this it's more down. I feel nasty sick! I took all my doses as normal, took my 2 doses of mepron, went to the chiro to get adjusted and then decided to drink some kombucha....bad, bad choice. This is only the 2nd time I have tried kombucha since I always forget to drink it. Usually when I go to the chiro, more toxins get released from being adjusted. So I figured kombucha would help me detox and even me out more. Boy was I wrong! It's making me herx instead. So I am herxing from mepron, herxing from the kombucha and there is a lot of die off floating around from being released at the chiro. My body is over loaded and not happy with me. I feel like I need to puke, I am in a lot of pain all over, my head feels like its going to explode and my face feels the same. I am hoping an epsom salt bath will pull some of these toxins OUT!

Who Is There For You?

I read on a lymies facebook status "People get sick of you being sick." It's totally true and you find out real fast who your real friends are when you are chronically sick. We get sick of being sick!! I am sure a lot of the time people don't know what to do or what to say, especially if it an on going sickness like most people with lyme disease. Going into remission is a loooong process, it can take years, and usually does! It's sad to me that people I thought would be here for me haven't been. I know people have busy lives and have their own issues they have to deal with which is why I don't expect much. Most lymies just want a phone call, text, email, asking how you are or asking if you want to get together. Of course we don't have energy to be too active so for a lymie to hang out usually means renting a movie or going to one or laying low doing something like a bon fire. We really don't expect a lot, just want support and to feel like your friends still want to see you. It is a very lonely disease and hard to get through and we need all the support we can get. I am very thankful for all of the awesome Lyme friends I have made, they totally understand how I feel physically and mentally and I would be lost with out them! Thank you to all of the people that have been there for me!

This & That

I am still herxing a lot and having a rough time. Mostly at night and on the weekends, for the most part I can keep it together during work hours. The massive heat index does not help any and makes me feel really sick so I do my best to stay out of it. Pain is still here but it gets much, much worse at night. Bone, muscle, joint, head aches, etc. It really is almost every inch of my body. The head aches are horrible, it's my entire head, then travels down into my jaw, then to teeth and down the back of my neck. In fact as I write this I am in a really large amount of pain. Probably shouldn't be on the computer! A new herx for me is what feels like electrical currents shooting through my body, mostly my head. It is so very painful and you pray it's a fast one. The ones in my head are the most painful. There is a lot of die off happening which means there is a lot of toxicity floating around in my body that I need to try and get out. I am taking a break from my sauna for now because I herx too badly and it effect my lungs and lung tissue too much right now and would like to stay out of the ER ;-) Lord knows we lymies end up there too often. So I am sticking to epsom salt baths, dry brushing, lemon water and acupuncture for now. I always do all of the above but the salt baths, normally I would do the sauna. I haven't worked up the courage to do coffee enemas but I know a ton of people that do them and say it works great!

Salon visits are no longer enjoyable. I went to get my hair highlighted tonight and was just in pain the whole time. An hour and a half of someone pulling your hair, putting you under a very hot dryer when you are already hot, washing your hair and rubbing(more like scraping) your head with her very long finger nails and then doing it again with conditioner, then brushing and more pulling, a very hot hair dryer that kept burning my very sensitive scalp and blowing it right in my ears, hot iron and done. I was very thankful it was over. By the end I had a raging head ache, my scalp hurt and I wanted out of there! Pre-Lyme treatment I loved going to the salon, now not so much! At least my hair color is nice!

Emotionally it has been hard lately. I can feel the die off happening in my head, which isn't pleasant. I am so drained and tired but can't fall asleep so always lacking energy the next work day, I can only sleep in one day a week if my hubby gets up with the 4yr old because we are working the other 6 days, foggy, dyslectic, very weak, easily depressed because it feels never ending, etc, etc. I could go on and on. Had enough complaining?! I am just doing what I am supposed to be doing and trying to get through it all and try to be a good wife, mother, friend and business owner I can be.

Lyme Herxing

In The World Of Brain Fog

One of the herxing symptoms I have is brain fog, I have some pretty interesting days and thought I would share, yesterday there was a lot. Hope you are entertained! You know you are a lymie if--

• Apparently shampoo now goes on the shower body puff
• Go into a store just to buy milk, walk in the door and totally forget why you are there
• Shave one leg and not the other, I guess I wanted to be rugged and smooth
• Switching letters around as if I am dyslexic, so badly that spell check has no clue what you are trying to spell
• Keep forgetting names and call everyone by the name of your pet piggie
• You can't remember if you have already shampooed your hair so you end up doing it 3 times
• Throw a load of laundry in the wash, totally forget it's in there, re-run, forget again until you have re-done this process 4 times, and THEN you remember to put it in the dryer
• Forget if you have fed your piggie so he ends up getting 2 breakfasts, no wonder he is fat
• Had to add one more that happened tonight. I went and rented a movie that I thought I hadn't seen yet. Showed it to hubby and he informed me we watched it last month! Really?! Come on!! Guess I can keep renting the same movies!

There have been many more but I can't remember them ;-)

The Yellow Paint Medicine

I am back on the "yellow paint medicine" AKA-Mepron for my co-infection Babesia. I started it last month and boy did I herx from it! Shaking, dizzy, super nauseous, twitching, tons a brain fog... I got a week break from it and now I am back on this week. So far I really haven't noticed much of anything, not sure if that is good or bad. I do notice when I am on it that I don't have night sweats and overall can tell it's working. As long as it keeps killing bugs we are good to go! Oh, and the "yellow paint medicine" is liquid and, well, tastes like Paint! Yuck!!! It's super nasty and really hard to get down the pipe! I also have to eat high fat foods twice a day when I take it so it is properly absorbed. I am used to a very low fat diet so that has been really hard to adjust to as well. I see my doc tomorrow, we shall see what she says!

Lyme+Stress+Traveling=Rough Shape

It has been a rough week or so. I found out my cousin passed away unexpectedly which has been a huge shock to everyone involved. Of course I was very upset and really stressed out about the situation. I shut down my daycare and planned for the trip. He lived in a different state so my family and I loaded up a big van and headed out of town so we could be there to support the rest of the family and to say our good byes to him. The drive was about 5-6 hours depending on how many stops we made. Between the stress building up, the drive time, having to skip certain meds because of such a busy schedule, having to say good bye, hotel beds, having a hard time finding proper gluten free and dairy free meals and some drama involved I am maxed out. My body is pretty mad at me and I am in a lot of pain. Mentally and emotionally it's been hard to deal with and physically my body is breaking down. I feel so bad for my uncle and my other cousin. It's hard to see people hurting so much and knowing you cant take the pain away. I wish there was more I could do to ease the pain for everyone. Stress is not good for Lyme but I still think it's nothing compared to loosing your son and your brother. I am trying to find peace knowing he is in a better place now and not in pain anymore. I love you, cousin!

The Depths of Darkness and Despair

I read a great post from another lyme blog that I follow and decided to share it with you all. So many lymies struggle with just staying alive. Click HERE to read it.

Small Herx-shaky

I was having a herx so decided to video tape it. A lot of people haven't seen me herx, so here ya go. It is a small herx but I was shaking all over my body. As you can see I couldn't hold the camera steady with my other hand.

Really Bad Herx!

I have been herxing off and on since I started my new "yellow paint" drug. It's powerful! But last night was the worst! I jumped in my sauna to detox and was drowning only after 14 minutes so got out and showered to get all the toxins off before they are re-absorbed like I always do. I could feel the air hunger start but it wasn't too bad. Once I was out and back in the living room it hit me BAM-MAJOR air hunger! I could NOT get air, my chest hurt, my chest was super tight, I was getting dizzy and started to tip over and felt like I was going to pass out. My husband was at the store so I went downstairs to take a xanax. I tried to control it for a while but it was just getting worse so I knew the xanax would force my body to slow down and I would be able to breathe again. When my husband came home he found me bent over on the floor in the kitchen, I was trying not to pass out and focus on breathing. When you are like that it feels like an eternity until the drugs kick in. I crawled back up the stairs to lay down and wait for the drugs to hit me. It took a while but I could feel them slowly start to work. Once they kicked in full force, I was drugged and feeling good and passed out for the night! This is exactly why I do not detox at night when it's just me and my daughter at home or just me. You never know what kind of reaction you will get. The sauna got really deep into my tissue this time. It's good it's killing things but way too overwhelming when I am already herxing. Lesson learned, if herxing already do NOT do the sauna! Today I have air hunger and I am super drained but this is nothing compared to last night!

Herxing Love/Hate Relationship

It is 3:30am and I am up hexing and very sick. This is when you start praying you will just die in your sleep, it's is so miserable and wouldn't wish it on anyone. Herxing is good, it means the drugs are working and killing the bugs off. It's just a matter of getting through it. I have been saying many choice words tonight and trying not to puke up my insides. It better be worth it in the end because right now, it doesn't feel like it. On that note, computer light=way more nausea. Signing off!

We lost another lymie to suicide

TOUCHED BY LYME: When pain is simply unbearable

As a kid growing up in southern California in the 80s and 90s, Bryan Bower was a bit of a daredevil: BMX biking, rollerblading, skateboarding, snowboarding—never a show-off, but always pursuing his jumps and thrills. As a college student, he discovered a new passion, rock climbing. He went everywhere with his new best friend and climbing buddy Rhyan. Joshua Tree, Tahquitz, The Needles and Malibu Canyon were southern California favorites. In his early 20s, Bryan started training to climb Yosemite's El Capitan, practicing with one of those folding ledges that you haul up and sleep on when you’re half way up the 3,000-foot granite face. All that came to a screeching halt about six years ago

when Bryan was struck by a series of bizarre symptoms: debilitating headaches, brain fog, intense pain in his spine and shoulders, night sweats, difficulties with his balance, sleep disturbance and depression. That prompted a series of doctor appointments which, after many twists and turns, eventually led to a diagnosis of Lyme disease. By this time, the infection was deeply entrenched in his brain and central nervous system.

His was a dramatically changed personal landscape. There were different kinds of rocks to climb now, boulders named severe neuro-Lyme, co-infections, and brutal suffering.

He would try different doctors and different treatments through the years, even traveling to Mexico for alternative therapies. Sometimes, he could muster some of that old daredevil energy to dive headlong into a new treatment protocol. Sometimes he couldn’t.

Occasionally, there would be some improvement in his physical situation. When it didn’t last, he’d pour his agony and frustration into the written word, on his blog or in anguished poetry.

Previously a devout Christian, Bryan felt utterly forsaken by the God that had once offered solace and refuge.

In the last few years, Bryan spent most of his time in bed, trying to distract himself from blinding pain that even heavy-duty meds couldn’t relieve. He’d surf the web on his laptop, searching for alternative Lyme treatments while lying on an electro-magnetic mat. He’d keep TV, Netflix, or video games flickering on the big screen in front of him, in vain hope of even momentary diversion from the pain.

Friends and relationships from the past had pretty much fallen by the wayside. His mom and dad gave love and support and tried to lessen the isolation as much as they could.

Yet, nothing he tried could carry him away from the pain. Ultimately, according to his family, Bryan “just wanted the pain to stop.” On May 2, 2011, he ended his own life, leaving his parents to read the following words he’d penned for them earlier.

Don't follow my starlight
It goes well beyond and you must stay
and drift away until you too are gone
- Bryan Bower

I never knew Bryan, but his is the fourth Lyme-related fatality I’ve learned about recently. It makes my heart sick. Wake up, America! Tick-borne diseases are stealing our children. While the medical establishment, insurance companies, and government health officials play politics and pretend that Lyme disease is no big deal, or worse – a complete sham – people like Bryan are abandoned by the institutions that are supposed to help them.

A speaker at the recent webinar on Lyme by the Centers for Disease Control made the astonishing assertion that long-term neuroborreliosis would eventually “resolve” on its own, without any treatment whatsoever. Tell that to Bryan’s heartbroken family. Tell that to untold thousands of Lyme patients who live with intractable pain and other unrelenting symptoms.

The loss of this young man makes me both sad and angry. We in the Lyme community owe it to Bryan and others like him, to channel such emotions into meaningful action. Tick-borne disease is taking a toll on our society that will not “resolve” on its own.

Click here to read Bryan's memorial page with some of his poetry.

The TOUCHED BY LYME blog is written by Dorothy Kupcha Leland, CALDA’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.

Cry out to friends and family to take notice. PLEASE!!!

A lyme friend of mine posted information on facebook that I thought was really useful and educational! I am sharing what he had to say-Thanks Josh Cutler

It's one thing to have a disease that you know is going to happen to you, you know it only has a handful of side effects. For instance cancer, you have 2 options get chemo

and get better or the cancer quickly overwelms your body and takes your life. Aids, is now a managable disease and you can live a normal life without much complication.

Diabetes which in some cases can be prevented, as long as you keep certain things in check you are good to go. I know their are several other rare disease that make life very

complex.

But let me share with my almost 1750 friends what lyme disease and what it does in full. For most patients we do not get diagnosed right away because testing is outdated,

and still using the same methods since the 1970's the CDC and IDSA openly admit that it is not accurate. So how are we left to diagnose this horrible disease? Most diagnoses are done

with some labs, but mostly a clinical diagnoses which often happens to late for many. Several months after getting bitten and contracting the lyme disease it is to late, the general

4 weeks of antibiotics is generally no longer enough and has given the lyme and it's co-infections time to spread to the brain,heart,lungs and central nervous system. At this point the

side effects of the disease and the co-infections can be long. And even in this early stage can be fatal.

Most common in people with lyme is the following:

CARDIAC Symptoms

heart arrhythmia

PVC'S

Mitral Valve Prolapse

Tachacardia

Bracardia

Low blood pressure (to the point of constantly fainting)

High blood pressure

unable to perform light tasks and sometimes due to lack of cardiac strenth and fatigue some are stuck in bed. Sometimes for years.

BRAIN Symptoms

Anxiety

Panic attacks

Generalized Anxiety disorder

Deperession

OCD

Brain fog

Disrealization

Dispersonalzation

Eye very sensative to light, normally resulting in the lymie wearing sunglasses all the time.

ears sensative to sound, to the point of always wearing head phones.

Constant ear ringing

Short bouts and issues with uncontrolable rage.

Vision problems

hallucinations

Central Nervous System:

Seizures

body twitches

Fatigue

Body pain ALL OVER

weird sensations all over your body

Lungs:

Trouble breathing.

Shortness of breath

Treatment for lyme can be compared to that of which a cancer patient goes through. The reaction to bacteria dying in our body is called the Herxheimer reaction,

The Herxheimer reaction occurs when large quantities of toxins are released into the body as bacteria (typically spirochetes) die during antibiotic treatment.

Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins. It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions. The intensity of the reaction reflects the intensity of inflammation present.

Pretty much, all symptoms you experience on a daily basis come out 10 fold. This reaction makes it hard to do treatment cause most times it makes people sicker and puts them in the hospital. While under the care of most

hospitals. They yank them off the meds and call the perscribing Dr. a quack or a nut. This along with several natural methods have been the only way to see any remission

in lyme disease. Remission is very hard to achieve for several reasons. The videos I post below will explain that.

This list is NOT exhaustive and is generally what a person with lyme will experience on a daily basis. From my perspective this is what I deal with daily. I fight to live

and look normal and it is almost a curse cause people assume you are not really sick. It is the curse with this disease. I have no clue why I decided to go off the end

and post everything out tonight on facebook. Rough couple days? Possibly, but this is what we experience. Again, please never any pitty. We just want people to check the facts

and stand by our sides. Do you guys not see people are dying almost everyday from this disease. DO you or will you just sit by and watch it till it effects your family?

Not only do we get sick and our lives come to abrupt stops, then we have to fight with doctors,insurance companies and with all the pilling medical bills and being unable to work

as most lymies can't. We lose all we own. As if being sick was not enough. Who can afford 2-6grand a month for treatment? All we ask is support, spread the word. Take 5 min of your day

to ask someones family who is sick with lyme. HOW CAN I HELP? It doesn't have to be money. Can you write a congressman? Can you send in a story to your local newspaper? Awareness is key.

We don't want to see anymore deaths in this community..

Most of my friends I know that have had this disease, have become humbled and have a true respect for life and each breath. If you take nothing away from this, take that.

Each breath you take, each step you walk, each day you enjoy with your family and friends is a gift. Don't throw it away and don't take it for granted. I know thousands of

people that would give anything for days like that again.

I thank God for my faith, without it I have no idea how I would have made it this far. This is HONESTLY in my eyes the hardest journey a human can walk. Years and years of it.

Please help us fight. Below are some videos, please take the time to understand what this disease is, does and why we are fighting for rights. Thanks and love you all!!

Herx reaction videos:

http://www.youtube.com/watch?v=dGfpUhdRtLo&feature=related

http://www.youtube.com/watch?v=YysgBDxvZ6c&feature=related

http://www.youtube.com/watch?v=Pf5E0-1xfIo&feature=related

http://www.youtube.com/watch?v=MNVjUD0iS_4&feature=related

Videos from News stations: Today show/Good morning America/Local news outlets.

http://www.youtube.com/watch?v=vkxINRCRCDM

http://www.youtube.com/watch?v=mSdP-KoaSVk&feature=related

http://www.youtube.com/watch?v=SjjuC66g9lw&feature=related

Tons of more links just hit up youtube. MOST OF ALL WATCH Under our Skin. You can watch it on Youtube for 2.99. It is on demand on netflix. It is an amazing and well made

film. Here is the trailer.

http://www.youtube.com/watch?v=sxWgS0XLVqw

Declining Once Again

I am so disappointed! I was doing great in April and then once May hit I started to slowly decline. Now I have definitely relapsed. My babesia is back full force, having night sweats every night, most mornings I have to peel my clothes off and air hunger is back. I think the two worst symptoms of lyme is the air hunger and dizziness. It's so scary when you can't get air in your lungs no matter how many deep breathes you take. So here we go again, dealing with this crap and starting a whole new batch of drugs. I am low on a lot of things, iron, magnesium, calcium...so I am starting some stuff for that too and changing my diet. No wonder I am soooo tired all the time. Today I start a new drug for yeast overgrowth that can really kick my butt and herx and tonight I start another new one for babesia that can also cause me to herx big time. I so don't want to be in that place again, but it means it's killing the bugs. It's just a matter of how hard it hits me and how I am going to get through it.

It's especially hard to be back in this place after doing so well and feeling like I was actually getting better and the hard stuff was behind me! I was 80-90% most days and we were actually planning for our next child. That is the most upsetting part of this whole thing, I can't plan for that anymore. There is no way my body could handle a pregnancy anymore and I am starting some pretty aggressive treatments that I wouldn't be able to take during a pregnancy. My doc and I are also discussing some more treatments that are even more aggressive than what I am starting this week. I will talk about that when the time comes. So, I feel like my life has been ripped away from me again and my hopes and dreams for the future are out the door. I have been really emotional about it and depressed. It just plain old sucks and I have had enough!

Pills

Now that's a pill container! My old one looks so small now! My collection just keeps getting bigger. I am starting some new stuff that I will post about when I have more energy.

Heat=Herx

I don't like to complain about the nice hot weather since winter took SOOOO long to end, but I am really hurting today from the heat. It's hitting me hard, which makes me herx and feel really nasty. Was trying my best this AM not to puke all over the yard while the daycare kids were playing and swimming. I am grateful for the warm weather but at the same time my body is not happy with it!