Mold

I get tired of negative updates, but I am so disappointed in our rental townhouse lately. I feel like there has been nothing but problems with this place since we have been here. For the most part they have been good about coming and fixing things when they need fixing. But it does really seem like it has been one thing after another, guess that's what happens with an old house that hasn't been updated in a long time. There are many things we like about the community- there are tons of kids for our children to play with, nice trails, swimming pool, lake and lake access, tennis courts, basketball courts, nice parks. But the actual home, its been disappointing. 

The really big one was when our shower pipes kept shaking/vibrating and was so crazy loud. We would turn it off really fast because it sounded like it was going to explode, that made showering interesting for sure. I kept contacting the rental company to come take a look, over and over again. Nothing, no one came. Three months worth of trying to get them to come look at it. And then one day it burst, yup, the pipe burst. Which in turn meant our living room ceiling started flooding and in the end came crashing down. Did I mention I was pregnant with our second child at the time and due any day. Awesome timing, so they came to fix it, and before they finished I had our baby. Thankfully they rushed to get it done before we came home from the hospital. But, it all could have been avoided if they actually were diligent with response time and getting things fixed, or actually coming and taking a look at it before it becomes a massive problem. Funny how fast the owner of the company that you didn't know existed, contacts you when you write a not so nice review/rating on google about the rental company. I hate being mean and having to get to that point, but I will if it effect my family and our health. So now I worry if they actually fixed it properly or if there could be mold growing under the surface. Which brings me to my next point-

I recently discovered mold in our bathroom. As if we don't have enough health problems in this family, hey, lets add in more mold exposure, that will be fun! Who ever installed the bathroom floor did a piss poor job and it shows. The edges aren't flush with the walls and they never would stay down. I had maintenance come caulk around the edges but it still would pop up. I finally just peeled it back to see what was going on, and there it was, mold, all on the underside of the vinyl floor. This was a horrible idea on my part because I exposed myself even more to the mold, but I tore it all up and threw it away. I went into pure panic mode and wanted it OUT of my house ASAP. There was a floor under it and after taking the floor up I could see the toilet had been leaking and it was clearly poorly installed. Who knows how long this has been going on, insert more panic. Maintenance came out, scolded me and told me he didn't see any more mold. I wasn't convinced but we had to wait for the owner of the place to respond before they could move forward with tearing everything up and re-doing it all, including installing a new toilet properly. That was probably a week ago, still waiting. 

Since then I have noticed that every time we shower, there is a black like dirt material that appears on the floor. At first I thought it was my messy 9yr old. Lord knows that girl practically rolls around in the dirt. But nothing was adding up. I would just wipe it up with a towel and throw it in the laundry. Tonight I had enough and investigated again. Yup, more mold. Can I tear someone apart now? Really? When I was looking around, I was pushing on the wall and baseboards. One section was damp and actually peeled off, that's where I found the mold, behind the drywall. Ugh, this is so dangerous and unhealthy. Not only for my own health, which is already struggling, but for my babies. My children do not need more health problems and this makes me so angry. So, once again, I am taking photo's for proof, emailing the management company, sending photo's to them, and demanding to know what they plan to do about this. Seriously, I don't even know what to do anymore. I can't have my health go to shit even more than it already is and my children cannot get sick from a house that should have been taken care of by these "professionals." I am at a loss and just really disappointed and upset. We cannot have these set backs. I guess if I have to, I will get higher up people involved and call the city etc, just real tired of having to fight extra hard for health. We will see what happens, in the meantime I guess I won't be taking detox baths since we only have one bathroom. 

Two Week Break

I am finally getting on here for an update! I completed my first round of treatment, which was 6 weeks, and then went on my 2 week break. This kind of treatment is called "pulsing", I will write another post explaining what that is, and why some docs treat this way. 

I was really looking forward to the break, I was herxing like crazy and so exhausted. I was really hoping the break would give me some relief and a nice break before the next round. Week 1 was amazing!!! I felt great, had energy, felt like I could keep up with life, was on a mission to get a bunch of things done around the house etc. I went a little crazy with my To Do list, it was just such a relief to feel so great after a rough 6 weeks. Week 2, not so much. I think part of it was me over doing it during week 1, and then also my body was crashing and it was clear I needed to go back on treatment. I still felt better then when I was on treatment, but not great. A lot of symptoms came back and tons of body pain. I was in a pretty ridiculous amount of pain yesterday. I over did it the day before having a fun family day fishing with the kids. I paid for it, that's for sure. But it was still nice to get out and be active and have fun. 

Today I started back on treatments again. I did my morning infusion today and I have already felt it kick in. Which is both good and bad. Good, because its killing the bacteria and doing its job. Bad, because I feel like poo. I really need to be better about detoxing this month. The reason many people on treatment feel sick is because there is SO much die off happening so fast that the dead bacteria floating around in your body becomes toxic. A persons body cant rid it fast enough. Hence amping up detoxing 100%. So there ya go, I will be detoxing tonight....I promise!! 

Treatment-Week 4-Herxing

Week 4 has been much harder than I thought it would be. I haven't changed anything or added treatments, but the herxing is insane. I am proud of myself for being able to get things done I need to as far as parenting and working but it sure isn't easy. I have tried to add in things to make life easier. I started ordering on-line groceries, using Amazon to also order things I need and using help from others when it is needed. It takes a village when someone isn't sick, it sure takes a village when you are sick. I really do hate asking for help and needing help, but sometimes I have to give in and just ask, accept it, and move on. It is my life, I have to just do what I can. Thankfully I have fantastic neighbors that have helped me out some. 

The herxing has been kind of strange and I have some new symptoms I have never had before, and then some I have had many times. One new one is I keep getting a sensation of bugs crawling around in my left eye. I don't know what that is about but its disgusting and I would be perfectly fine if that one left and never came back. It doesn't matter what I do to try and stop it, it just kind of comes and goes on its own. Another new one is I am getting "hot spots" randomly around my body. I know some of it can be histamine related but I am sure some of it has to do with herxing and also neuropathy. It tends to be in the evening, I will get one hot ear, one hot foot, one spot on one of my legs gets hot, one hot finger. Its very strange. Some of the other herxing symptoms I am getting: hot flashes, major fatigue, night sweats, nausea, head and neck ache, visual stuff like blurry vision that comes and goes along with floaters, brain fog, muscle fatigue, muscle pain, body pain, foot pain, dizziness, itching, ear ringing. Some of these I have all of the time but some are from herxing and all the die off in my body. 

I have been trying to work on detoxing since the meds are killing off the spirochetes at a rapid pace. I am sure my body cant keep up, hence the ridiculous herxing. I am trying to remember to put burbur drops in my water daily, I took a detox bath today (which I need to do every couple of days), trying to drink tons of water. I need to get back in to many other detoxing methods too to help things along. Another easy one to do is Dry Brushing, I always forget to do that before jumping in the shower, but it really does help a ton. It is hard to fit in detoxing when you are so drained but its an important component to healing. 

Yesterday and today have been rough. Today I have laid low and have been in bed most of the day. If I have my eyes open too long, they start to really burn. So I take breaks after being on the computer or watching tv to give them a rest. I wish I could just sleep all day long, but in order to get my supplements in, my IVs, and food so the meds dont make me extra sick, I cant go too long in between with out having to do all of those things. They all need to be spaced out through out the day and some cant be taken to close in time to another one. Then of course the kids want to see me etc. I am doing the best I can to rest up on the weekend so I can function during the week so I can continue working and continue to be available for my kids. 

If anyone has any specific questions about Lyme Disease, Co-Infections or anything related, please let me know. I would love to do blog posts about those to help educate people. That has always been my goal once I became sick. I want people to be aware so they can protect themselves and their loved ones! And to better understand chronic illness. 

Hurtful Comments

I have learned over the years that uneducated people will make hurtful comments. The majority of the time they don't mean it, they just don't realize what they are saying is completely ridiculous and just how hurtful they can be to a person. For the most part I have learned to let those comments roll off my back. Or, I choose to take those opportunities to educate the person on the subject of lyme, or chronic illness. But sometimes it surprises me, or hits me harder than I would like. Especially when my children are involved. 

I was at a family function recently and someone there was asking about my health, my picc line, my treatment plan, etc. Then the person asked why the docs thought I had relapsed and needed treatment again, as in what caused it. I explained that there are many factors when it comes to lyme and everything else I have going on, and there are a million reasons a person can relapse. I said I am guessing my last pregnancy did a number on my body and it may have caused a relapse. This person then turned to my 2yr old and said "You did that?" Right to her. NO! SHE did not do this to me. If you are looking for someone to blame, then blame me. Myself and my husband are the ones that decided to get pregnant and add to the family. I am the one that knew the risks going into it. I am the one that chose, she did not. Do not ever, ever, for one second put this on my children, ever! This is not their battle and they are not the ones that caused me to be sick. I do not for one second want them ever thinking they are to blame for any of this. How horrible of a feeling for a child to think they are to be blamed for this. 

Having said all that, I feel we went into the process of pregnancy very educated. We had talked to many professionals, and learned everything we could. We waited until I hit remission and was healthy enough to handle a pregnancy again. I wanted another child for years, and years. It was really hard to wait, but we knew that was best. Once remission hit I went on a combo of pregnancy safe drugs to prevent passing lyme to the baby, for the entire length of pregnancy and breast feeding. I did everything I was suppose to, to keep my baby protected and to keep my own health in check. Sometimes you can do everything right and still have consequences when it comes to chronic health problems. But guess what, she was born healthy. She is a sassy, spunky, loving, fun 2yr old just like her big sis! She was worth the years of suffering to get better. The tough pregnancy was worth it, both of my children were worth it. My children will always be worth everything I go through. They are the reason I get out of bed every morning and the reason I keep fighting to get my health back. I will never stop fighting for them. They are my everything and deserve only the best life can give them 

Feeling Defeated

I have been feeling defeated lately. When I first started infusing I felt fine during the day, but nights were really hard. I was on a HIGH dose for my evening infusion. I called my LLMD to ask for zofran and then my yucky symptoms just stopped. It was very strange. Doc still wanted to cut my dose in half since it was a very large amount and also got me some anti nausea meds. I haven't had to use any yet but I am glad I have them on hand. 

It seems as though the 3rd week of treatment has hit me hard and the fun and random lyme roller coaster has kicked in. I feel fine one hour and the next I am completely exhausted and herxing, and then again the next hour I am fine again. Lyme is so weird! Typically by night time and weekends I am completely fried. So exhausted its ridiculous. My daycare and my own children keep me going during the day and into the evening, but man I am pooped! Then you add in some insomnia and its a party over here!

 Tonight I pushed myself way too hard to get some shopping done. I wanted to get all Easter shopping out of the way but that also meant too many stores in one night. I am exhausted, my whole entire body is humming and vibrating, I am getting shooting random pain in various areas, and feel like I have fatigues muscles. 

Since my hubby works strange hours it has been hard for me to get all the errands taken care of. I am definitely going to do as much shopping as possible from the computer and having it delivered. Thankfully between amazon and a grocery delivery service here I think I can get most things I need. Also need to stop pushing myself so hard to try and keep on top of so many things. Can't be super women, need to give that cape a rest sometimes ;-) On a side note, I am thankful my 2yr old doesn't seem to really care much about me infusing and what its all about. 

Picc Line Is In!

Picc line is in! I had it inserted on March 1st, and thankfully the same nurse I had last time was who I got this time. She's really great-so kind, calm and caring. Last time I had my picc line placed they had a hard time getting it to go to the proper place. Thankfully, this time around they have some new technology and it went much, much smoother. It only took 1 try vs 4 last time. Phew, I was very thankful for that. I had myself worked up over it since it took so many try's last time around. I wasn't looking forward to that part of it. But this time really was a breeze, so easy and smooth and hardly any pain at all. 

Before they started getting set up to place the picc line, they hooked my up to a normal IV in my hand to make sure I wasn't allergic to a particular antibiotic. Once they got that running the picc line process started. Since I infused at the clinic, that is officially the first day starting back on IV therapy. I am now about 3 weeks in and have had both good days and bad days mixed in there. Here are some pictures of the picc line process. 

A New Health Chapter

About a week ago I traveled to see a new lyme doc.  I have heard for a long time that he is amazing and the top lyme doc in my area, so got on his waiting list. Took 9 months to get in but his current wait list is 14 months so  I was lucky to get in within a 9 month wait time.  The doc was great, he really took the time  to listen to my history, questions, comments and concerns. He did a great job explaining things and his staff was fantastic. The nurse also did a great job explaining all the strange tests she was giving me. They seem pretty up to date with the testing etc they were doing and I found it pretty interesting. Lets see if I can remember everything--

When I got there the nurse gave me some tests I have never heard of or had before. The Bioelectrical Impendence Analysis and Phase Angle and Cardio Wave Analyzer. 

Phase Angle is a calculation of 2 electrical properties, reactance and resistance, on a cellular level. Phase angle is an indicator of membrane integrity and water distribution in and around the cells in our body.  It tells us how well our cells are performing. Surprisingly, I did well in this test and my cells are working well in my body currently. 

For the Bioelectrical Impendence test I was hooked up to electrodes to measure body composition, fluids distribution, body fat, body mass, etc . It measures the resistance of the body tissue.He didn't end up going over these results with me so I am not sure where I stand with this one and no clue what the results mean on the print off. I may have to do some research on this one or just ask next time I am in. It basically just gives him a measure on how well my body is handling my current health state and will help give a comparison when I start treatments etc. 

Cardio Wave Analyzer. This tests Digital pulse wave analysis, Heart rate variability and The autonomic nervous system, Sympathetic nervous system Parasympathetic nervous system and Accelerated vascular. 

When doc came in we went over my whole history, I tried to remember everything since all my records didn't6+ come in time for some reason. Hope I hit all the important points, its hard to remember 9 years worth of medical problems. He asked a lot of questions and I thought it seemed really up to date in the field and very knowledgeable. Its pretty clear that both lyme and babesia are back full force. He checked my hands and feet with this vibration tool. My hands did really well and I have good sensation and no loss of feeling but my feet are showing some damage, I couldn't feel the vibration for as long or as strong in the feet vs hands. Right foot seems to have more damage than the left. He also said he saw arthritis in my front collar bone by just visually looking at it, one side sticks out more than the other. Hands have Rheumatoid Arthritis, he also said my hands have Swan Neck Deformity, which I have never heard of before. I looked it up and the definition--is a deformed position of the finger, in which the joint closest to the fingertip is permanently bent toward the palm while the nearest joint to the palm is bent away from it-- is exactly how my hands look. I hope my hands don't get worse because those photos on the web are disturbing!! Never google haha! He also did a brain assessment screener test-9 and above is severe...I tested at a 23. Which basically means my body is constantly in the Flight or Fight stage and why I have trouble with anxiety and lines up with Babesia always raking havoc on the brain and function of the brain. Aka-my brain and autonomic nervous system are a hot mess and all over the place.  The plan moving forward--

They took 6 vials of blood to run an immune panel, and new patient panel to monitor health markers.

I will be re-tested via I-genex testing in CA. They are the gold standard in lyme testing. Their comprehensive lyme panel looks for lyme disease from several points of view. This test will include an immunofluoresence assay, western blot testing and PCR testing. An immunofluoressence assay is looking for IgG, IgM, and IgA to lyme disease. The western blot looks for antibodies of IgM or IgG to specific parts of the lyme bug, and PCR searches for DNA of the lyme bug. While no test is perfect this is an excellent first step in the laboratory diagnoses of lyme disease. If we can prove lyme and get a CDC positive it really helps lyme cases and getting insurance to cover medications, testing, and the general medical world to take you serious. It also really helps your case if you were to apply for disability. Any good lyme doc out there will not just go off of labs, it also has to be a clinical diagnoses. Testing is just not accurate enough bc those darn bugs and spirochetes can dig so deep in your body. 

I have to come back two separate times for more testing. These tests are called Evoke. Evoke EEG and CNS vital signs. They can not be done on the same day so have to go back twice for this. The evoke test is a neurocognitive test but also measures a wide variety of my underlying neuro-endocrine physiology. It is a sensitive measure of  my autonomic nervous system balance. It is the autonomic system that is the interface between your brain and your endocrine and immune systems. It also measures and maps your brain waves, which help them understand how my brain is operating and how it is responding to stress. It also gives indication of GI health. mitochondrial health and certain chronic infections.

The treatment plan- Since its clear things are back full force, I had done many years of oral antibiotics, bicillin injections and responded the best to IV treatments via picc line, he is ordering another picc line placement. I have mixed feelings but I know my body will respond best to this sort of treatment. My only worry is I will herx a lot. Last time I had my picc line placed, I was warned by many to brace myself bc I am in for a hell of a ride with such powerful drugs being pumped into me twice a day. But, I felt amazing. This time around my body isn't going from years of orals and then straight to a picc line....so the herxing could get rough. But, I am hoping it makes me feel good again vs sick. As long as we can get insurance to covered it that's the plan and he wants to do this soon. The clinic is contacting a couple infusion companies and they will contact me to get rolling. He wont say how long the picc line will be placed for because it just depends on how my body does with the treatments but its a minimum of 6 months. In addition to IV treatments I will also be doing a bunch of supplements again.  I also will start a very high dose of stevia, a special kind. This particular dosing and kind is known for killing off lyme. Also on the list is to start HBOT--Hyperbaric oxygen treatments. NOT excited for this one, I am claustrophobic and being locked into a small chamber and being pumped with oxygen doesnt sound fun to me one bit. It has to be a special kind and luckily there is one not too far from my house. HBOT is a way to increase the amount of oxygen in your tissues. Studies have shown that HBOT can imprive all of the key physiologic areas of the functional medicine matrix. This included the GI barrier function and altering the gut microbiom. HBOT can kill certain pathogens, decrease inflammation, and improve the activity of white blood cells. It can improve mitochondrial function thus improving the conversion of fluid in the energy. Bio transformation/detoxification can be enhanced by HBOT. It has also been shown to increase the sensitivity to messenger molecules such as nitric oxide and certain growth factors. It has also been shown to release your own stem cells. I have  many friends who have done HBOT. 

Since originally writing this I have an update on the picc placement. I will thankfully be using the same infusion company as last time and even my same nurse for my home care! They are such a great company to work with. I will be getting the picc line placed next Tuesday, 3/1/16. I am hoping they get it on the first try and it's not as tricky as last time. Once it's in I can't feel it and it is pretty easy to use. Here we go, hope its not a rough ride!! 

Do You Feel Alone In Your Journey?

Do you ever just feel alone? You could have all the people in your corner, and you're still lonely. I think after a person has been chronically sick for such a long time, people just don't know how to help you anymore. Friends and family and anyone else supporting you don't understand. People will never fully understand what you are going through, unless they are going through the same thing.

I've been sick for so damn long, I'm drained, physically and mentally. I hit remission for two years, and that was so nice. A really nice break to feel so good for that period of time. It gave us a chance to have our second daughter, she was so worth waiting for, and all the pain and suffering I went though to get better. My children keep me going, I push through the days and nights that I'd rather not. It would be easy to surrender and just lay in bed and not care about what's happening around me. But that wouldn't be fair to them, and I would miss so many fantastic memories with them and my husband. But man, some days, some days are just so hard. My health is declining and I feel like it's declining more rapidly these days. I'm still able to work my job and function as a parent, but it's not easy, that's for sure. On the weekends, I'm so exhausted I just want to lounge around and veg to catch a bit of a break. Thankfully my husband is awesome and let's me sleep in, and if I nap, I'm out cold for a minimum of 4 hours. My body just needs it! 

I do feel like people have given up on me, I mean in the world of the chronically ill, why would they stick around? What are they suppose to say or do for you after all that time? It's the same story, ya know?! My answer is- just be there. Keep communicating, just talk about your day, ask about ours, anything really. Just be there for them, because they need it. The longer the chronic health problems go on the more support a person needs. I think it's hard for the outside world to see, we get good at covering the pain and anything else that's going on, because we have to. It's our world, and the pain that was an 8 on the pain scale five years ago, is probably now a 4 because we adjust. If you're reading this and you have someone in your life that's chronically ill, keep checking in with them. If you're reading this and you are the chronically ill person, know that I completely get it and we can lean on each other to get through. It's hard, really hard, but the world still has a lot of beauty in it, and beautiful people on it. We just have to look a little harder some days

Relapse and New Diagnoses

I am very long over due for an update on here. I gave birth to our second daughter in February of 2014. It was a rough pregnancy to say the least but I made it through and gave birth to a perfectly healthy, sweet, spunky little girl! I was on a two antibiotic combo while pregnant to help prevent passing along lyme disease to her. Even though I was in remission, it is still recommended you be on the two drug combo to protect the baby. We tested the cord blood and that came back negative. I am keeping a close eye on her but other than two food allergies, she is a healthy girl and we couldn't be happier with our two girls. They are the loves of our life and we couldn't ask for better children! Parenthood is an amazing journey, right?! We are so blessed! 

Onto my health. I am not doing so well, recently I've been diagnosed with Mast Cell Activation Disorder or Syndrome. Also known as MCAD or MCAS. Over the past year I have been having a lot of trouble with food allergies and sensitivities. I have has a few anaphylactic reactions, Iv'e had to use my epi pen twice and should have used it three times. Have been to the ER many times and just trying to figure out what the heck is going on with me. I was lucky enough to see a Doc in the Mast Cell field that is the top dog, many people travel really long distances to see him and lucky for me I didn't have to go far. I had to go through testing twice because its VERY sensitive and the first batch was mishandled so round two was the winner (or looser? lol). It proved I do in deed have Mast Cell and we can move forward with treatment. Its tricky and very confusing. There's only so much researching I can do before I get completely overwhelmed and have to take a break. So I still have a ton to learn. According to the specialist and the Mast Cell community, it can take years to find the correct drug combo that is the winner for me. Oh joy, sound familiar? It's all so confusing. This particular Mast Cell doc doesn't believe in chronic lyme and thinks the crappy testing out there is accurate (insert eye roll), so it gets really confusing what is Mast Cell and what is my lyme and co-infections. I really do not understand at all why these medical professionals don't believe you can have both. Of course you can, ticks and lyme are everywhere, its an epidemic so of course you can have many different health things going on at once in one person. And I am sure they feed off of each other and break the body down even more. I have so-much-learning-to-do. Its exhausting! I was also recently tested for the MTHFR gene and it looks like I have that too. Not surprising but still annoying to add more to the plate. Still learning what that's all about too and need to see the genetic team for more specific testing. Apparently I can be at risk for blood clots now? As far as the lyme, I think I relapsed a few months ago. I didn't want to admit it and also didn't want to pay an arm and a leg to see my medical team and for treatment. There is no denying it now though, I am getting worse and need to do something about it. Just in the last week or two the bone pain has gotten so much worse. Joint pain has been mostly feet consistently and lower back but now its traveling. Knees have been so dang painful recently along with feet. I am sure both babesia and bartonella are back from my current symptoms I am showing along with the lyme. I feel like an old lady. It especially kicks in full force at night after I have been sitting for a bit, its hard to get up and oh so painful. The joys, right?! So, I decided to make an appointment with my naturalist in a couple weeks and go from there. May be adding in my LLMD in NY too. 

My older daughter who is 8 is having a lot of health problems lately too, so we are trying to figure out what is going on and how to help her. There is a local peds Mast Cell doc that she will see for testing, most likely test her for lyme again and have some specific genetic testing done for her too. Poor thing is too young to deal with so much. She already has celiac disease and a metabolic disorder called MCADD. Lets hope we can get all of under control for her specifically. 

Drugs, No Drugs, Drugs, No Drugs

Just a little update. My poor body has been a mess. I was doing great so my lyme doc wanted to take me off all drugs for a month in order to do the Borrelia Culture through Advanced Labs. It's a newer test and a lot of docs are super excited about it because it's much, much more sensitive than any other culture out there. I felt great the first 4 days off treatment and then went down hill very fast. Psychologically I was a complete mess, I was so tired, and a million other things. So after I couldn't take it any longer I called my doc back and explained. He had me go back on a much higher dose of one of my meds to try and jump start me back to feeling good. Not good. I-FELT-HORRIBLE. I needed to puke but wouldn't allow myself because I needed to keep the drugs in, which resulted in dry heaving. Needless to say I was HERXING like crazy, my body was not happy with me for cutting all drugs cold turkey and then going back on, but only one drug, and a higher dose than normal. I decided to change my schedule up and take them all at bedtime in hopes I would just herx when I was sleeping. It didn't really seem to help much. Finally two days ago I couldn't take it any longer and made the decision to go down to one pill instead of two. Yesterday I felt so much better and so far today I feel pretty good! Thank god! My doc wanted me to call after I was back on for 10 days and then we plan on trying to go off drugs again to do the lab in one month, oh joy, can you feel my excitement?! Not sure If want to deal with the off and on drug battle again. He is going to call my back and we will go from there. I am just going to enjoy feeling good again and see what the next step is we take.

Joint pain-Lyme or Damage?

Joint pain was one of my first symptoms 5 years ago, one day I woke up in a lot of pain and my fingers frozen in the claw position. I couldn't pick my baby up out of her crib, I couldn't unscrew her bottles, it was hard to zip things, button things, snap things, etc.  It just got worse from there and my body would add more and more symptoms as time went on and on until a doc FINALLY diagnosed me with Lyme Disease along with the co-infections Babesia and Bartonella. Fast forward 5 years and 2 years of treatment and my body is in a much better place. I normally don't have joint pain anymore unless I push it. So which is it? Lyme disease or permanent damage from going so long with out being diagnosed and treated? I often wonder this. According to one of my lyme docs my Lyme and Bartonella are in remission and I just have Babesia left. This one has been the hardest on my body and hard to treat and get rid of. So when I over do it and my joints hurt, is it the babesia? Maybe my joints will always hurt and get sore when I am more active. If I do a lot of sewing or crafting, I am sore. If I walk a long ways, I am sore. If I work out, I am sore. Maybe I am just not active enough? Maybe babesia is hanging on? Or maybe that is how it will always be. Its frustrating not knowing. At least it isn't as bad as it was 5 years ago. I just hope that one day it will totally be gone and there are no lingering effects of Lyme and I will be in total remission.

Toxicity

Impending doom fills the air


The fog takes over your brain

It is thick like sludge

Your thoughts slow down

You feel stuck in between two worlds

The toxicity takes over

You can’t think

You can’t focus

You are no longer thinking like a person

You are thinking like the monster that has taken over your brain

You want out

It doesn’t matter how

You want to be alone

But know you shouldn’t be

You want to run, but the monster will follow you

You want it to end

Even if the end is truly the end

You know you need to surround yourself with those that care

You don’t want to, but force yourself to

The disease can’t win

You are stronger than that

You are strong

You will beat this


You will fight like you always fight

You are strong

What I Wish I Knew Ten Years Ago

•What a deer tick looks like and how very small they are


•When a deer tick is engorged with your blood it can look as big as a wood tick


•How to properly take a tick out. Do NOT squeeze the body, use a tweezers and get the head


•You don’t have to be in the woods to get it, you can be in your own back yard or right in the city


•Not everyone gets the bulls eye rash


•If caught early and you treat right away with antibiotics it can potentially be enough to get rid of it


•If caught later, you could have years and years of treatment and the damage may be irreversible


•Doing a full body check every single night is a key factor to find any ticks either before they attach or get them out as soon as possible


•Showering after being outside lowers your risk to get any unattached ticks off of you


•Putting your clothes in the dryer after being outside can kill ticks attached to your clothing and lower your risk


•Pets can bring ticks into your house and they can drop from them onto your bed, couch etc and then attach to you


•Kids are at the highest risk


•Keeping your lawn very short and cleaning up leaves right away lowers your risk


•The Elisa test they do at a normal clinic is a horribly inaccurate test and normal MD’s are not educated like they should be about Lyme Disease and co-infections


•You need to see a Lyme Literate Doctor to get accurate information


•You should be clinically diagnosed in addition to the advanced testing, there is no test out there for lyme disease that is accurate enough to 100% go off of


•If after going to a million doctors and getting nowhere, and getting diagnosed with random things, you are still not getting better you need to see a lyme literate doctor to at least rule out lyme disease


•Lyme Disease isn’t called the great imitator for nothing. It can imitate MANY other diseases out there 


•Do your homework and fight for your own health. Only you know how you feel

Doctor Update

I went and saw my out of state doc last Friday for my in person check up! It went great, love my doc! He thinks that my Lyme and Bartonella are dormant and I just have Babesia left. How awesome is that!!!!! I have two out of the three in remission now, woohoo!! So now we are slamming Babesia even harder to try and kill it all off. I had a little drug vacation and started back today on some powerful drugs. In 3 weeks I will add more and gradually bump up to the higher dose. I am a little worried about how much herxing I will be having with such strong drugs, but I have had plenty in the past two years already. So I say bring it on! Let's kick it's butt!! Let's hope in 3 months I am in a much better place, I am making some huge strides and SO excited. Babesia has been the hardest one for us to treat so we don't know how long this process will take but at least there is a light at the end of the tunnel now. Yay for good news!

Rough Week

Last week was rough, I had a ton of pain. It was the kind of pain that was unbearable and pain meds didn't even touch it. I was preparing to sell my crafts at a craft sale so I was doing a lot of last minute prep which apparently caused pain. I guess too much sitting on a wood kitchen chair and using all my joints and getting up and down from the floor. It's a little disappointing since I was doing so great and thought maybe I was past the really bad stuff. When the joint pain and swelling start to set in again then I start to wonder if it will truly ever be gone. Maybe that's the damage I will have forever because it took so long to be diagnosed? Maybe it's because I am still having trouble with babesia? Not too sure, but it sure was nice when it was gone.

Today I am finally feeling more like myself with much less pain. Last night I had some pretty intense uterus pain so trying to figure that out but overall I am feeling much better. A lot of lymies have a 3-4 week cycle were their lyme flares up for about a week and then they are back to their average self. I never had that but the last two months are proving differently. I would rather not fall into that category! ;-) I have my injection today and appointment with my local lyme doc so I will be back on with an update!

Good Lyme Disease update

Are My Eye's Open?

I have been fighting a lot of fatigue this week. I think it's herxing and coming across and being SO tired, worn out, drained, can't keep my eyes open...you get the point. My poor husband has had to take care of morning routine with my daughter for quiet some time now. I don't hear my alarm AT ALL! I just stopped setting it so my hubby wouldn't have to get up and walk across the room to turn it off. Before I got sick things were totally flip flopped. I was always the one that heard the kiddo and had to pry him out of bed. I guess it's his turn now ;-)

These are they times I wish my daughter still took a nap. Sometimes I put her in her room for quiet time but it normally doesn't last too long. Sometimes I just can't fight it and take a nap while she is playing in her room. I have no idea if she took a nap, but I got a nice one in! I don't feel comfortable doing that most of the time though, I would like to keep my house standing!!

Overall I am still doing pretty good, especially if I look back to when I started treatment. That felt like the end of the world! Literally felt like I was dying. Now it's smaller things that get on my nerves because I have been on treatment so long and I get annoyed I am not done yet. Overall I have had much more energy since I started my Bicillin injections. Even though my husband may think otherwise, I think my memory is slowly improving. I can keep up with my daughter more and can have more of a structured day again with her.

Some things I would like to see improvements on. Since I stopped Mepron my bone and joint pain is back. It feels like deep bone pain and normally pain meds don't touch the pain. I am also battling night sweats, which is really getting old. Both very clear evidence that Babesia is still hanging on and we need to kick it's butt!! Not sure what's in store for me but have been trying to figure this out with both my in town doc and out of state doc. Hoping to start something soon for this. I am getting nervous, I see my out of state doc early May and he said a while back that he thinks I will make big strides by the time I see him. I am not where I would like to be and it's only 3 months away ahhhh!!! I am sure I will be on treatment for a while yet but I am glad that I am seeing improvements and able to function. We will see what the new meds will bring!!

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! :-)

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!

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!