Starting to see the light.....

It's been awhile since I've updated. Mainly because I was in a place that I couldn't seem to pull out of, hopelessness, uncertainty, depression, desperation. I just didn't want to do much of anything!

After speaking with my Doctor, we decided that a PICC line placement was best (basically an IV in the upper arm that feeds through into the superior vena cava). This is because the orals were wreaking havoc on my GI tract, we didn't want any recurring ulcers, my veins were giving out - almost impossible to draw blood. Also my nerve pain was really bad and my nasal staph did not seem to be improving.

I was scared to have a picc line, but one of my greatest friends was with me through it and she has been such a huge help. I've had it for 2 weeks and all is going great!

I'm on a very strong broad spectrum antibiotic, Teflaro (some argue that it is stronger than vancomycin -so my Doctor was not surprised by the scary reaction I had with my first dose). Now I take medication before the infusions to counteract any reactions. 4 days left of Teflaro, and I am feeling pretty remarkable!

Very few symptoms left. I was able to cook Thanksgiving dinner, then shop for 12 hours straight on Black Friday, with no problems! Yay!!

My protocol will be finishing up hydrogen peroxide IV's, then starting the PK protocol (lipid replacement),  IVIG to boost my immune system (it's like blood plasma infusions). And a few months of antibiotics while I'm symptom free and then (hopefully)  - what I have been waiting and praying for - remission!

It's been a long, very tough road, several hospital stays, very scary and painful symptoms, at some points I wondered if I could survive.

I still have symptoms, but they are very few. Of course this isn't over, my body took a beating and there are plenty of "slow fixes" to deal with. But I know I'm beating this. My faith in God was and is my biggest strength, along with my husband, my Mother, my very best friends, and my amazing doctors, one in particular who refused to let me lose my focus. These people will always be a huge part of my life.

I'm not ready to run alongside my husband in the athletic Savage Race running/obstacle courses, but I'm determined that I will in 2013! I am also 12 months away from my degree in Natural Healing/Nutrition & Personal Fitness!

Again, this isn't over. But I'm looking toward to the future and I like what I see! This journey has been life changing, and still is. I'm excited to start adding more to this blog as far as recipes, diet, nutrition, forms of treatment, and any way I can think of to help others through their journey.

I have been fearful of writing such a positive entry, but not so much now. Always the chance of a relapse :( but I feel pretty confident, and come what may! Most of my fears are gone.

I love you all for reading this and being so caring and supportive! I pray this is real, that the light I see only gets brighter!

A Rough Week....

It's been a rough week. My strength and faith have really been tested. It's times like these that I dread, even though I usually come out of it somewhat stronger. Still, the tough days are never easy.

It started the night my husband left for an out-of-town 5 day business trip. My daughter took me to the ER, I wasn't quite sure what was wrong, ended up being a small seizure. I'm thinking and hoping it was because of a sudden substantial increase in Bartonella meds (those herbs can be tough!). I only got 3 hours of sleep in a 36 hour period.

Then, burning in my chest and a significant pain in my right side, liver or gallbladder maybe? Ulcers not healing? More procedures, ultrasound & upper endoscopy. Both were perfect, and I was thrilled to hear my ulcers are healing very well. So, chalk the pains up to "who knows" because when you're dealing with lyme and co-infections, anything goes, really.

Add real life stressors on top of it, and it's sometimes just too much to handle. One of my dearest friends, who is battling lyme as well, was, well is, also going through a rough patch with lyme illness this week, and in many ways we've held each other together. Sometimes, that's the best medicine.

My hydrogen peroxide IV couldn't be done because my veins are exhausted, so we'll try again in a couple days....

All over body pain, my scare at the ER, several tubes of blood, IV's, out patient procedures, lack of sleep and life stress really took a toll this time and I fell pretty hard and my thoughts were not good. The support of my great friends and family, and mostly my faith in God has once again pulled me through.

I don't know where I am in this illness, I don't know how close to remission, I don't think that is a question anyone has an answer to, really. I found another doctor close to home who is also helping me and I think this will make a big difference. Praying so, anyway....

I am able to go to the gym again, no fatigue, tolerable pain, and I've got a good appetite. So once again Janet, forge ahead, press on, keep swimming. As I lie here in the early morning hours writing this on my smartphone, I feel a little stronger of a person than I was last week. I'm convinced that everyone that goes through lyme disease and comes out in victory at the end, are truly Super Heroes. Really! I can see my cape somewhere in the future...

A huge thank you this week to Brittany, Jeannie, Jenny, and always to my Lord & Savior, Jesus Christ....I love you all <3

Things that are crucial to healing.....

I believe, that with any chronic illness, there are things that we need to do that are absolutely imperative to healing. Many times when we get a diagnosis such as Lyme disease, we take our medication and supplements as per our doctor's orders and hope for the best. After all that is what we pay our doctors for, right? To treat us and guide us so that we may heal and get on with our lives, enjoying the things we once loved doing.

If we do only that, we are selling ourselves short and may be prolonging our illness, and compromising our quality of life. I believe that at least 50 percent of our healing begins at home with our lifestyle. My belief in this is so strong that I will dare to say that this is more of a fact and not an opinion. Three things that are extremely important are diet, exercise and overall frame of mind.

 Think of it this way: people that do not have illnesses function better entirely when they eat healthy, exercise and have a positive attitude. Add a chronic illness to your life and these things do not become a choice but actually a necessity. With Lyme disease your immune system is not only trying hard to fight the illness, but is also compromised and suppressed because of the often intensive and long term treatment. We need to help our body recover and fight the illness. If we choose not to eat a Lyme friendly, healthy diet, exercise or have an unhealthy attitude, we are doing our bodies an injustice.

These three things take a lot of willpower! I consider myself proof that it can be done. Keep in mind that I am not at the point of remission yet; however I believe that because of the things I do at home my fight is much easier than it could be. There are some people who cannot stick to the diet or feel that since they are sick they should be able to enjoy the food that they love. I do not pass judgement on anyone with this illness as I understand everybody has their own way of dealing with things. This is just the path that has helped me....

 I will write more in depth about the "Lyme diet" in days to come, for now I feel the desire to point out the basics, and give those of you who read this something to think about.

 As far as exercise goes, many people with Lyme disease cannot get out of the house much less get out of bed , but there are different ways and different levels of exercise. For instance, if you cannot get out of bed maybe you can find a program or routine that works for you, such as simple arm and leg movements and light stretching. If you cannot use weights then stretching and/or yoga works great and is very beneficial to the body. If you are able to get to the gym or do light weights at home, by all means do so. This is what I do and in the beginning it was very hard, I did not think I could do it. However, I soon realized not only that I could do it but it helps with my pain, my energy level and my state of mind.

Cardio exercise, according to my LLMD,  should be nothing more than a walk on the treadmill or a walk outdoors until you get the green light to up the intensity. Of course I am not a doctor and I do not (yet) specialize in personal fitness, so please remember with any form of exercise consult with your doctor first!

 I believe that frame of mind is SO very crucial.We just don't feel well when we are not having positive thoughts. When we try our best to have a positive attitude and a good outlook our brain responds by sending chemicals that make our bodies respond in a positive way. And let's face it - nothing good comes from worrying, nothing good comes from being scared or thinking in a negative way, right? As the saying goes, "whether you think you can or whether you think you can't you are correct."

I understand that we are all human and we are not always going to have positive thoughts and days, but if we can trust in ourselves to at least try, our journey through illness and life in general will be much easier for us. Also, on those days where you cannot find the hope or the positive thoughts, lean on those who love you that keep the hope strong for you! I really feel that everybody has the power inside of them to be the best that they can be if they just look within themselves and find their inner strength.

 The choice is up to you - only you can decide what your life, and your healing, is worth to you. If you are reading this now understand that I believe  you are definitely worth being the best that you can possibly be, and you have the power to make your own journey more tolerable. Think about it!

As always, feel free to leave comments, subscribe to my posts and contact me anytime.

God Bless, and keep swimming!!

New to Lyme? Take a Deep Breath and Relax...

I was thinking over the weekend of how far I have come in my journey in a short time. I remember when I first got my diagnosis and how overwhelming everything quickly became. I went to my original support group and was reading all of the comments from the newly diagnosed members, and I felt compelled to do a post on the topic. I will give what I think are some basics and after reading this, you will find more help in detail on my "links" page.

This may not be the best example, but it makes sense to me. Lyme is like being pregnant for the first time, in a sense. You will find many people giving you different advice, and sometimes people think that their way is the only way. This is not so, as our bodies are all different. So first and foremost, do not let yourself become overwhelmed. Take it in if you want to, but remember this is YOUR body.

I strongly recommend that you find yourself a good, solid support group such as Yahoo Groups, HealingWell or there are many on Facebook. You will find many very kind people who have been through it all and are very willing to help and give you support. Remember, however, that no matter how supportive, you still need a good lyme literate doctor. Taking medical advice from someone else can be, and quite frankly IS dangerous.

Here are a few things, among others, you need to have if given a lyme diagnosis:

 PATIENCE. Unless you have just been bit chances are you have chronic lyme. The treatment for this can take a LONG time. Weeks into months, months into years with many cases. There can be setbacks, breaks in treatment sometimes, and although it is normal to get anxious, you MUST have patience with this disease.

PERSISTENCE. You have to be persistent in your treatment. Do not give up, do not falter. Sometimes, you will just want to "give up" but you must keep pushing forward. Remember you CAN and WILL get through this, and you should be your biggest cheerleader. Don't give up on your battle, EVER.

POSITIVE ATTITUDE. I cannot stress this enough. Sure, you will have days that you feel defeated and just can't go on, you will be sick of being sick, hopeless or helpless. Keeping a positive attitude is crucial in your journey back to health, I believe, in ANY illness. Constantly feeling down and depressed just is not good for you, and your body will let you know in ways of pain, fatigue, worsening symptoms, etc. It is a good idea to find something that keeps your spirits up. Also, it is a good idea to stay away from people who do not support you, or those who are not "good" for your overall health.

 For me, I find the most strength through my faith in God, and also through exercise. Find your own way, whether it be your own personal faith practices, or your own type of exercise, a hobby, keeping a journal (this is a good idea anyway, to keep track of your daily symptoms), supportive friends/family, your lyme support group, and/or a professional therapist preferably one who works with individuals with chronic illnesses.

 If you EVER have feelings of suicide in any situation in life, SEEK IMMEDIATE MEDICAL ATTENTION!!! No matter how bad things seem, there is ALWAYS a way to work things through.

You will also need to do some research. This can be a difficult thing at first, as there are many sites on the Internet that will give you false information in regard to Lyme. Stay away from sites such as the IDSA website, in my opinion. There are many trusted sites, and you can find good ones in the websites such as Living Lyme on my "links" page as well as from the links in your support group.

You do not have to become a pro, that is up to your doctor. But with any disease, it is a good idea to learn what you can and become educated on what is going on in your body and the medications that you put into it. Take it slow.

Realize that you will need a LYME LITERATE Doctor, Naturopath, Physicians Assistant or Practitioner. Many of those who treat lyme do not take insurance, but some do. I will be adding links for Doctors in different areas, but for now you can ask in HealingWell or in your lyme support group.

There is not one standard lyme treatment that is good for everyone. Some say that long term antibiotics are the ONLY way to go. That is not so. Many have found success in this way, but also in natural practices such as herbs/Chinese medicine practices, and some have success with combined conventional and natural practices. This is a decision that should be made between you and your Doctor. There are risks and benefits with any type of treatment, and you need to find the best and safest treatment specific for you.  You MUST treat, but I have learned to steer clear of those who insist that their way is the ONLY way.

You will have to change your diet. If you want to get better, you must do this. Your doctor will help you with this, but because lyme causes painful inner body inflammation as well as candida, stay away from these things at all costs: sugar, gluten and in most cases, dairy. Basically, you want to eat as healthy as you can. Shop the perimeter of the store, eat fresh vegetables and low-sugar fruits, preferably organic. Wild caught fish, organic eggs, grass fed beef/bison and free range poultry. This is basic.

IF YOU CAN and if your Doctor permits, light exercise is very important in healing. Light weights, yoga, low-impact light cardio are all good options, but first consult with your doctor.

Detox is also crucial, and there are many ways to do this. Sipping on lemon water, dry brushing your skin and Epsom salt baths are pretty standard. There are other ways such as FAR Infrared Sauna (with low or no EMF's!) and other methods that you can discuss with your doctor.

I hope this helps :) Please feel free to leave comments or subscribe to my blog and get updates via/email. (see link at top right of page). Remember to check out the "links" page. As my blog "grows", I will add more helpful links, recipes, etc.

Remember, stay positive, keep smiling and keep your eye on the prize, GOOD HEALTH!

Getting a Diagnosis....REALLY?

If it looks likes Lyme, acts like Lyme, walks, talks and smells like Lyme, and your blood says it's Lyme, then, of course it's Lyme, Right?

Well, one would think. One would think that only having one Lyme band would constitute a doctor to say, "Well, maybe not. It could be something else." What they don't know, (and sometimes DO but won't admit) that sometimes Lyme disease will show it's ugly symptoms without showing any indication in your lab report. Usually it becomes more evident in blood testing only after treatment has begun.

EVEN IF you are CDC positive in a blood test, many, well most doctors will tell you that "you do not have lyme disease"....I am not just speaking for myself when I say that even when you have that test and all the symptoms to go along with it, you will probably still see multiple doctors before you hear "you have lyme disease."

 This is for many reasons, such as lack of educating our doctors in even the best medical universities and many other complicated, political reasons which would be long enough to write a book. Anyway, those of us who suffer are caught up in the middle, and all we want is one thing....treatment and health.

I was new at this and was quite shocked that NO DOCTOR would admit that I had Lyme. I mean what was the big deal? Just give me the diagnosis and let's start treatment so I can get better in a few months and get on with my life! Right? Not so fast.

When People told me that I had to "pay out of pocket" to get treated for Lyme, I refused to believe that, and continued seeing doctors that took my insurance and kept getting turned away because "lyme disease did not happen in Florida" and "chronic lyme didn't exist."

When I finally gave in and paid $350 to see an LLMD (lyme literate medical doctor) I was angry that I had to pay "so much" BUT was so happy when that doctor told me that yes, in fact I did have lyme disease. I was thrilled to get a diagnosis, FINALLY, as I think most of us are, not because we are happy to be ill, but happy to have finally found someone to put a name on our condition so that we can start treatment. We happily go to the pharmacy, get out bottle of doxycycline, thinking that all will be well soon.

 I quickly found through my own research and from others with lyme that this disease was extremely complicated and caused other underlying diseases, co-infections. Also autoimmune disorders can occur along with harm and involvement to virtually all parts of the body, including the central nervous system. Although I liked my doctor, I found that he did not know enough about the complicated disease.

I will get into more aspects of this disease in later days and posts, but a person with lyme disease quickly learns that their entire life changes. Everything. You become a different person emotionally, physically, spiritually, financially, academically. Your medicine cabinet is now a pharmacy and your kitchen in now a health food store. Your house had medical equipment galore.

My first LLMD, a half hour drive, turned into a second LLMD, an 8 hour drive, and then (and currently) into a third LLMD, a 2 1/2 hour flight. Fast forward to 2012. I'm still fighting, I do not know where the end is, but I fight.

People who have had lyme disease for some time and read this will understand every word....those who have just discovered that lyme may be their problem may be scared when reading this. And it can be scary! But make no mistake, if you stay focused and keep your eye on the prize (health) you can and will beat this.

You fall, you get back up. You cry, you wipe your tears. Lyme beats you up, you beat it back!! You never give up, because there is hope, and for many people I know, including myself, you become a better, stronger, wiser person.

During the days of treatment, life is very challenging, as you will read in days to come.

Also, I wanted to point out (and I should have in the beginning) that many people with lyme suffer from neurological problems and it is hard to read or follow along, which is why I try to really break up my paragraphs. Also, for many it is hard to concentrate, find the right words or stay focused on a subject.

 I have this problem, so if I seem to "jump around" or not make the best sense, I apologize, but I want this to be real and I am not trying to win an award for the best grammar or the most well-versed blog. This is a blog from a person who suffers from Lyme, not to be confused with a best-selling author, and I'll even throw in an "lol" to finish that!

I welcome your comments, always!!! If you want to follow along with my posts via email, just click the link at top right of the page. Thanks for reading, and until my next post, be well, and remember that with anything in life, giving up is never an option!! ;)

And this is how it began.....

I created this blog because I want to be able to help people who get diagnosed with Lyme Disease, co-infections and all that comes with it. I remember how little I knew in the beginning and how lost I felt. This experience has changed my life and I have learned so much in every aspect of life.

 If the words I write in the upcoming days could help even ONE person, whether it be with diet, ways to cope with the disease or anything at all, I would be thrilled!! My first entry will be my story.

My name is Janet, I am a 42 year old Wife, Mom of four and Grandma of one. Up until the age of 36, I was healthy. When I say healthy, I mean healthy....never in my life had any health problems. I ate very healthy, lifted weights and did cardio 5-6 days a week. I was fit, strong, and full of energy. Life wasn't perfect, as it never is, but very close. Little did I realize what lie ahead....

In September of 2006, I began to get episodes of being lightheaded. They would come and go. Not too bad, but I would make myself a bowl of oatmeal and as I carried it from the kitchen counter to the kitchen table, I would drop it and watch it crash on the floor. This happened 3 or 4 times, I attributed this and being lightheaded to working out quite a lot and maybe needed extra nutrients.

 Then, I began falling down my short flight of 8 stairs, and I thought I was just being clumsy. Continued my daily life, until my fourth fall, when I had hurt my back pretty badly and had to go to the ER for an x-ray and take time to rest and heal. Within one week, I woke up with a gnawing pain in the center of my chest. Thought it was heartburn, took some antacid and went back to sleep. The pain got worse and worse, so bad that I thought I was having a heart attack.

 I went back to the ER, my heart was fine...but my stomach was not....I had 6 bleeding peptic ulcers and lost 2 pints of blood. The Doctors had NO explanation as to what caused these ulcers. A mystery. I was sent home with 3 prescriptions, and healed within a couple of months. What I thought was a freak incident was not at all....later I would come to realize that these were my first symptoms of Lyme.

I did heal. However, it was discovered in the hospital that my thyroid was not working properly so I was put on Synthroid. Also, my blood pressure had begun to run low, again I thought nothing of that.

 I felt pretty good again, until 2008 when my right shoulder tendons were "torn".....I went through a very painful surgery and 10 week recovery period, it took quite awhile to heal, almost a year, when my left shoulder began to hurt.....I refused surgery that time because I didn't want to go through the pain and rehab all over again.

Fast forward to July of 2010....I was driving home with my family from Michigan and my left hand began to get numb. I thought it must be from browsing on my smartphone. When we got home, it got numb and tingly again, as did my entire left arm, so back to the ER I went - fearing heart problems or stroke. A complete workup was done and all tests were fine, probably a pinched nerve they said. I went home.

In the days to come my symptoms got worse. Pains in my hands, feet, muscles all over, body twitching all over, chest pains, numbing/tingling in the extremities and face, sometimes I felt like my head was clogged, some foods were bothering me, (I'd never had allergies) and I found myself crying in bed.


Desperate and searching the Internet for answers since the Doctors had none, I found a Breast Implant Sickness support forum. I had implants, and all of these women had my symptoms, so I was so grateful to have found support!! I found a great Surgeon and quickly scheduled a date to have my implants removed, an expensive procedure that my insurance would not cover as they did not believe the implants were making me sick (although many women do get sick from their implants). I woke up from the surgery in tears of joy, celebrating the fact that the culprits of my ailments were gone and I was going to get better! I did not.....

My symptoms continued to decline. My surgeon told me that it would take time for everything in my body to settle down after the implant removal, still....I had an instinct there was something more. In the days to follow I saw several doctors and several tests were performed. My regular blood work readings were perfect. My tests were perfect. Only imperfections in my rheumatological blood work.

 I was diagnosed with nothing that could be certain, but I "probably" had: lupus, sjogrens, vasculitis, fibromyalgia, and possibly MS. I refused to believe any of this, and I refused the steroid drugs the Doctors wanted me to take.

I was given the name of a Naturopath that was near me, who did Electro Dermal Screening. I was skeptical, but desperate. I went to see her, again, out of pocket. She tested me and said, "Janet, your problem is not what the Doctors told you....your problem is Lyme disease."  Hmmm.

I searched and found some Lyme support groups on the Internet, had no idea what to do or what Lyme Disease was all about. I took the advice of a few "veterans" and went to my PCP and asked them to test me for Lyme. IgM Band 23 came back positive, that was it, that was all I needed. I had Lyme Disease. And so the journey started.