Today is a hard day...

Today is really hard. I’m laying in bed once again. My two younger boys are glued to the screen once again. My brain is left wondering if i will die of this terrible disease once again. My heart is so heavy so I called my husband in tears crying to him about how I’m sick of not being able to be a mom. I’m tired of not being able to help my kids that are behind in academics. My husband called our Pastor who called right away to remind me that God’s grace is sufficient and even though they are really going through it right now too, he callled to encourage me! It instantly made me feel better that someone understands because his wife is going through the same thing. So the story is that Gods grace is sufficient and there is no condemnation in God. He will step in and give me Grace where I fail with my children. 

My daughter has a choir concert tonight. I do not see myself getting out of bed today. If I can’t drag myself to her concert the condemnation will set in once again and I will need to remind myself that God’s grace is sufficient. She will be really mad! But God’s grace is sufficient! Today is really hard but God’s grace is sufficient! 

The fighters. Part 2

                                 Ok. Here is one thing I realized is I AM NOT A BLOGGER. My grammar is not perfect and I’m very cut and dry. I hope this does get better as I go but I just really feel like there must be someone this can help! So here is part 2 of the supplements I take. I call them my fighters. They help kill the Lyme and co-infections and get them out of my body. 

The first one is Foundation formula I buy this from my dr office and it has all kinds of good stuff in it. Japonese knotweed, turmeric, and some other things that are scientifically proven to kill Lyme. Next, the little tiny bottle squeezed in between the two big bottles. It’s hydrocortisone. I try very hard not to take pharmaceuticals but sometimes they are necessary for a short time. So I take the hydrocortisone for adrenals but am weaning off to see if there is a difference. Next is maca which is great for hormones and libido. Then comes the Re-shi it’s a mix between the shiitake mushroom and the rieshi mushroom if you have never done research on mushrooms they are amazing for your body. They helped me sooooo much with appetite. Remember I said I was anorexic. I could not gain weight...not even an ounce. I decided on my own to stop Lyme treatment for a bit and treat for parasites and take the re-shi. I slowly gained weight and look way healthier than I did. I was a scrawny 100 pounds and now I weigh 110. But mushrooms help with so much more. They regulate the immune system. They strengthen the immune system. If you can afford cordycepts they are really good for adding extra oxygen into your blood and body. Their is a story behind athletes using these in China to compete in the marathons. Next is chlorella to help detox and carry the Lyme out of my body it also aids in detoxing heavy metals. Next is lauricidan, it’s derived from coconut and they are little pellets I take them to help with the Epstein Barr infection and it kicks like a mule so you need to take it slow. Next is panthonic acid. It’s a “B” vitamin and water soluble so it will not build up in your system. It helps your nervous system. 

On to the tinctures. I make most of my own tinctures. Which I am mighty proud of. The first one is the A-L complex I do not make this one it has 14 different herbs in it and it’s a bit kicker. Remember I said I felt like I hit a wall in treatment so my dr changed things up. Well this stuff he said will make you herx BAD. He wanted me to take only 1drop and increase 1 drop every 2-3 days. Of course I was thinking what is one drop going to do when o take 20 drops of the other herbs. So I started out with 3 drops 2x a day instead of once a day. It KICKED MY BUTT!!!! The herxing was so bad and now I’m stuck in a bad flare. I backed down to 3 drops once a day. I would have to say it’s worth taking. I can feel it working but please start slow. It’s also very expensive so it’s a good thing I make all of my other tinctures . Next is cryptolepis it aids in killing the babesia which is a close cousin of malaria. When I first started taking this it also made me herx pretty bad. I also take malarone for the babesia which is a malaria medication. I take 2 pills for three days of the week. It’s still hard to get used to but I wanted to make note that when I started taking them I had a bad die off reaction and  broke out in petechiai on my stomach, neck and legs. Babesia lives in your red blood cells and puts up a good fight. Next is sarsaparilla I make my own and it’s the only one I claim to taste good. It smells like vanilla and is seriously yummy. It helps carry endotoxins out of your system. Next is hawthorn I take this for my heart, it is literally a heart tonic. It does so much for it. From strengthening it to help regulate your heart rate. I don’t make my own of this but probably will very soon. Herbs are expensive to buy and when you take them 3x a day it’s so much money. Next is cats claw I have been taking this the longest and it helps treat the Lyme. The bottles in this box are detox factors which has a ton of supplements to help detox it is also very expensive and I go through it fast so I don’t take it all of the time meaning I take it 3x a day until it’s gone and then i do t buy more for a while. It is wonderful for supporting your immune system and detoxing. Next is Beta Glucane for my immune system and last but definitely not least is green tea extract. Guys this is a powerful antioxidant and would help anyone. I think everyone should take it. You can but it with no caffeine if you are sensitive to caffeine. I do not take it three times a day like the other things. I only take 2 at lunch time because mine do have caffeine it helps a lot to give me a tiny kick. 

All of this is kind of overwhelming! But slowly you learn what helps and what doesn’t. I recommend adding only one thing at a time unles your dr suggests a different approach. I’m not going to lie all of this is very expensive and has become a huge part of our monthly budget. I buy most of my supplements from amazon and I like the “Now” brand some things I buy I make sure are more “top of the line” like probiotics and fish oil. The other things I get in the Now brand because I feel like it’s an in between being not the best but definitely not the worst. I also get labs done every month to make sure my liver and kidneys are not being affected. Herbs are very tolerable and will rarely harm you. Just one herb is great for many things where as a pharmacutical is good for one thing but cause many side effects. Oh I almost forgot I do take charcoal to help pull out the dead Lyme which constipates me like no other and you have to keep your bowels going otherwise all of the die off is stuck in your bowels or re circulating in your system so I also take a generic stool softener and sometimes psyllium husk. 

Please remember there is always hope and if today is a bad day God’s mercies are new everyday. Tomorrow will be different!

What I take (supplements and pharmaceuticals) part 1

I take a lot of pills daily. Some of you will be shocked at how much I have to take just to keep going. Having to take supplements among doing some other things like eating healthy and not pushing yourself to hard is one huge reason why Lyme changes your life so much. It makes you completely rearrange your. You can’t miss to many doses of supplements or you have to joy of starting over or herxing. So if you go somewhere you do the best you can at taking as many as possible with you but there are so many that it’s nearly impossible...and traveling...we won’t talk about that yet! Ok so this is what I take once a day. Sorry for the very messy counter. 

I will try and go over everything with you and why. 

Vitamin C I take 2,000 mg, vitamin D (not in this picture) I take Kirkland brand 2,000iu, stomach enzymes (also not in this picture) my stomach is really messed up. It always has been very sensitive since I was little but is even more so now. I have gastroparisis so I take as many supplements as I can to help my belly. Iron that is easy to digest and not hard in my belly, Fish oil and I think it’s important to get a more expensive brand of fish oil it really plays a big part in supporting our bodies. Ashawaganda root it’s a good supporting herb that helps with anxiety and is a great immune modulator, chase tree to balance hormones although I don’t know how much longer I’m going to take it. One thing it does help with us regulating your monthly cycle. Probiotics for my stomach. I get a ton of naseua and some weeks are worse than others, on these weeks I will take a few probiotics throughout the day. They also aid in digestion as do the stomach enzymes. Acyclovir for an out of control Epstein Bar infection. My dr said I will take this for three years. Reglen also for my stomach and naseua. Lexepro for anxiety and mild depression, coq10 for my heart and is such a potent antioxidant. Methyl B-12 the reason I take this instead of regular B-12 is because my dr is suspecting methylation problems and so he wants me on this until I get the blood work done. DHEA because I had low levels of something or another that effects my adrenal glands. Kelp helps with detox and high in iodine. L-Tryptophan I take this for numerous reasons. If your dealing with Any kind of chronic pain it would be a good idea to do a search on this supplement it’s good for so many things. 

So this is everything I take once a day. Usually at night. I also have a whole slew of tinctures and supplements I take 3x a day. The ones above I call my supporters and the ones I will blog about tomorrow I call my fighters. Also another important thing to remember is if it’s Lyme you are dealing with you have to remember that it’s a very stealthy bacteria. It’s smart so you have to be smarter and constantly change up your treatment regimen. I just changed from doxycycline for a year which didn’t seem like it was doing much to an herbal tincture (mixture) that I take only one drop of and it kicks my but. I hope there is someone out there that this will help and remember there is always hope and everyday God’s mercies are new!!!!

The good the bad and the ugly!

It’s morning....mornings are really really tough! This morning I have a headache the size of our country. It’s so bad I might throw up. Every morning I take tramadol and clonazepam. This morning I added zomig to the cocktail. This is a pretty normal thing. I don’t have much time to write this morning. I am trying to get kids ready for school. I want to write more later on the protocol I use because I know it will help some people. I just wanted to document some things really quick. This is me while trying to sleep last night. 

I was in so much pain I took everything in my arsenal so that I could fall asleep. My legs were in so much pain they felt like they were in a vice grip. I’m talking deep pain all the way to the middle of the bone. The muscles ached so deep that it felt like every nerve was screaming at me! I payed here and prayed and thanked God for my kids and my life. For the wonderful church I go to and eventually I fell fast asleep. 

This is me on a bad day too. This is why people have a hard time believing that someone like me is in so much pain. Because I can dress up and look nice when I can drag myself to the bathroom. I remember this day my pain level was about a 6. It’s not just the pain though. It’s the derealization that really gets to me. It makes it hard to function, hard to drive, hard to do anything! I still have hope that I won’t be like this forever. Yesterday was a bad day but God’s mercies are new everyday. Today is a different day so I don’t have to live in the pain of yesterday. Three things I’m grateful for are 1) my kids aren’t fighting this morning 2)my legs don’t hurt nearly as bad as they did yesterday and 3) i have a God that understands what I’m going through. 

I would really like to get this blog out there for people that have chronic pain. Not just Lyme disease. Anything from fibromyalgia to MS I am eventually going to write about things that help and routines I make with my 8 kids. I know it could  help a lot of people just to know there is someone else out there that understands what you are going through. 

Since my title is the good the bad and the ugly I wanted to post a picture of me on a good day. 

I confess I don’t take the best selfies. However I want everyone to see that there is not much difference from the picture above. Sometimes you can see it in my eyes that I am not doing well. But if you do t know me well or not close to me I can fool a lot of people. Please please understand that there are people out there that are in chronic pain. You don’t know who they are or what they are going through. Be nice to everyone because it could change their day! I hope you all have a blessed day and I’m hoping to be able to write about my protocol later. 

What I’m doing.

          What an I doing here? Why am I starting a blog about chronic Lyme? Why not about my 8 beautiful and wonderful kids. Why not about homeschooling. Why not about something slightly more popular. Why??? Because chronic Lyme is so misunderstood. Why??? Because I need to journal about how I actually feel. I hide things well, like any other person out there with a chronic illness. I like to hide it because it makes me seem normal. However hiding it has also made me push myself way to hard. Hiding it has hidden this terrible illness that has consumed my everyday.

         I know what you will say. But cassie you are a Christian. This is not your portion. This is not a reality if you are saved. Believe a little harder. Pray a little more. God is going to bring you through this. While I believe this is all true I also believe this is where God has me right now for whatever reason. Believe it or not it’s teaching me and it’s teaching my family how to be closer. Nobody ever chooses things like this for thier life so you don’t give it much thought until it happens. 

          I actually don’t even know where to start. I have been living with Lyme and co-infections for years and my immune system has been able to keep it in check. I remember the tick bite. I remember having to dig a tick out of my thigh because it was so embedded that there was no other way to get it out. It was there for days! I have had several kids since then and still no problems with Lyme. Not until my 4th child. Six weeks after giving birth I woke up in sooo much pain. Joints, legs, head...heck even my hair hurt! I went to the dr for my 6 week postpartum and the dr and I both agreed it was probably stress and doing too much. At this time I had 6 kids 2 of which were precious gifts to me! But the pain went on for way longer than it should have. I was sent to a rheumatologist and they diagnosed me with fibromyalgia. I had a very hard time believing it is fibromyalgia. I always felt like since fibromyalgia is an idiopathic disorder there must be something that causes it. It has to be more than fibromyalgia, for me to be fine when I went to bed and wake up in the morning with excruciating body pain. So i searched for years for a diagnosis. I had so many blood tests and imaging done. By the end of it all the dr.s said stress and fibromyalgia. Towards the end of the the years I spent searching for answers a dr had wanted me to see a phycologist. I was livid and never went back. This is the most frustrating thing to be called crazy time and time again. You know your body. You know something is wrong. This is way more common than you think and unless you have been through it people don’t even know it happens. 

          Through the years of searching for answers we were living a nightmare in our family. We moved into a brand new beautiful house that was perfect for our family size and it flooded a month after living there. The restoration company cane in and restored it while we were living upstairs. This was during the summer and so we were running the forced air. Little did we know that because the hvac system was completely full of water it was pushing the water through the entire system. It created toxic mold in the house and we lived in it for two years. This is when things were starting to get really bad for me. I was having episodes where I would pass out. I was diagnosed with POTS syndrome. Driving was nearly impossible. But through it all I still didn’t believe I had fibromyalgia I was still searching for answers. Somehow I cane upon learning of toxic mold. Ever since the flood we would have mold grow in the window seals of this brand new home. I sent of a sample of it to a lab that DNA tested it for specific types of mold and it cane back positive for 17 or so different molds 5 of them being super toxic. Being exposed to the mold made the Lyme symptoms terrible. Also through these years my son had a flu shot at 7 months and it paralyzed him. We spent weeks in the hospital he had brain surgery which was super stressful! All of this building on top of my now weakened immune system that used to keep the Lyme and co-infections at bay. I searched for a mold literate dr that could help detox the mold from my system. My first appointment with him was months out. By the time I seen him I weighed so little. I was under a hundred pounds and was anorexic (not by choice) my hair and eyebrows were falling out. I was a mess! He ran a ton of tests on my half of which I have never heard the name of. He said he was going to run a lyne test and I told him I had already been checked for Lyme years ago when I got the fibromyalgia diagnosis. He said he wanted to check anyways and ran a western blot in me. I was shocked to find out it cane back CDC positive. I have learned so much about the testing now and can see there is a huge problem with the Lyme testing that we have available. You see Lyme is a stealthy bacteria and quickly moves from your bloodstream to soft tissues, connective tissues and places that have low amounts of oxygen. Because I have had it for years it’s been able to reek havoc on my system. 

          I have been going to the same dr for a year now. I had gotten way better and then hit a wall with treatment. The dr changed treatment for me so I can keep fighting the good fight and that’s where I’m at now: I decided to start blogging my treatment and protocol that I use because there aren’t many blogs you can find that talks about this. I’m mean people that really get down to the nitty gritty about daily life as you are going through treatment. 

           I just started taking something called A-L complex and it is kicking my but. Like i said above I hit a wall with the treatment I was on for a year. Which was doxycycline and some supplements. So my dr put me on A-L complex. He said start with 1 drop a day-WHAT?- one drop??? Then go up by 1 drop every 2-3 days. He also let me know that it would make my herx which is a reaction from the Lyme die off. Boy was he right! I’m currently sitting in bed with so much pain that I can’t function. Meanwhile I have bribed my, with money of course, to do everything I would normally be doing. I however have a sick child at home and he is an older one that would normally be able to help. I homeschool two kids that are somewhat self motivated and my younger ones go to school. I dread the hour that they get home. This sounds bad but I’m going to be very honest on here that way you know your not alone if you happen upon this blog. I will have a whole new set of work to do when they walk in the door. It’s usually getting them motivated for their chore, snack messes, spelling and homework help. 2 of these kids are my HARDEST and that’s another reason why I dread it! Daily I have to wonder if I will have energy for these 3 when they come home and daily I fall short! That’s where God’s grace comes in. God has given me so much Grace while raising my oldest child (17) he is such a good kid and there is so much I would do differently. Isn’t that how it always goes with the oldest. So I need to ask myself why wouldn’t God give me the same kind of grace when I fall short every day. Our pastor preaches a sermon about Gods mercies and how they are new everyday. This will always stick in my head. But right now I am stuck in bed for the millionth time this month with leg and foot pain so intense I have cried about it. I NEVER CRY! Derealization and brain fog so bad I can barely remember my own name. I have left out so much but my hands are hurting from typing. Please if you have any questions just ask.          

This is what I look like daily unles I have to do the huge task of leaving my home. It’s draining to take a shower and to put makeup on. I would rather stay at home. I have read a lot of hopeful stories about people who have gotten better with I tense treatment. So there is hope... don’t ever loose sight of that.