Saturday, December 19, 2015

Long Overdue Update!

Goodness I am so bad at blogging!

As soon as I started feeling better it's almost as if this blog was too much of a reminder of such horrible sickness and pain and suffering. I am so grateful to be feeling better! I do have reasons why I believe I am feeling better too which I will share later.

For now the biggest update is on my daughter, Kayla, who was bit in July 2012 and was treated for 7 weeks only to relapse again after 6 months has been suffering with flare ups and on and off antibiotics with each new flare up. Day before yesterday was another flare up. This time giving her a fever of 103. She has a Bartonella rash on her leg and her knees and feet hurt and her neck felt bruised and achy.

Again to say that after 4 rounds of antibiotics she still is suffering clearly proves chronic Lyme exists and should not be ignored.

Back at the doctors suffering from high fever and pain in joints and neck
But what to do at this point? She's back on antibiotics, taking Minocycline and Plaquenil for now. On top of probiotics and vitamin B-12 and D. She also will be going to Vermont for magnetic therapy treatments.
Many have encouraged me to get her off antibiotics and go all natural. I wish I could be confident to do that, but it took a good two years of antibiotics to get me feeling this good. I am not cured by any means but I have my right arm back and my aches and pains are less and less and with the new protocol I am doing it's getting even better. I no longer walk like I am 100 years old and I don't think I have slurred my speech anymore! But I still battle brain stuff. I'm working on that.

So there's a quick up to date. Kayla's recovering right now from her flare up. Fever is finally gone. She started her first dose of antibiotics last night and we plan on doing a good 6 month round this time. After that I plan on going all natural.

As always we ask for your prayers!


Tuesday, July 14, 2015

Much Needed Update

It has been such a long time since I updated here. Even my daily journal has been silent. I did make one entry last week.

There's so much to update and way too much to type so I will just do a nutshell version:


  1. May 5th stopped cold turkey all antibiotics
  2. In April I started Magnetic Therapy
  3. Started drinking green smoothies to heal my gut
  4. July had last magnetic therapy session
Since quitting antibiotics my symptoms are returning. Not as bad as before antibiotics but that all too familiar flu like body aches and joint pains and arthritis pains are slowly back. Some days worse than others. Always worse at night time. It's hard getting up off the couch as I feel so stiff and joints hurt. Everyday I battle slight feverish feeling, and stiff aching neck. 

The magnetic therapy for a time seemed to have helped my brain pressure and my inability to be at the stores under the fluorescent lights without feeling faint. I didn't have to wear sunglasses in the stores anymore. 

However my magnetic therapist stopped doing the magnets they way she originally started and she relied so much on her strong mysticism beliefs. This made me uncomfortable and the sessions weren't causing me to herx like they first did and slowly my Lyme symptoms started returning.

I really feel the magnets would work if done properly. I am searching now to see how I can be trained to do them myself. I do believe with all my heart they did make a difference. And now without them I feel that because I wasn't able to have an adequate amount of time using the magnets, my Lyme will continue to strengthen, 

Since quitting abx and drinking green smoothies for gut healing, my gut has been 95% better and I have dropped over ten pounds. My stomach isn't bloated anymore either. 

Why did I stop abx? I guess you just get to a point where your body is screaming at you to stop! I felt that to continue on I was actually hurting myself. But mostly it was financial strain. I just couldn't afford the $200 a month for me and the $125 for Kayla's Lyme/Bartonella treatment. And the trips to my LLMD were $275 a visit and he is 2 and a half hours away. 

So now I am praying for direction to help me figure out how best to handle my daily aches and pains. 

One thing I desire to do is get a proper blood test to see if Lyme even shows up.

The one I am looking into is called ISpot. This is a new test that is supposedly much more accurate.  The test is expensive and so I am hoping to do a yard sale to raise the funds for it. 

I have had many folks suggest I do a Go Fund Me page to help with my Lyme expenses since Samaritans won't cover anything as it is a pre-existing condition. I looked into it but I don't like how much they take for their percentage.  So my best way to receive help is my Paypal account and sending it as a gift as Paypal doesn't take a percentage that way. my Paypal email is goobies4jc@gmail.com

This Lyme journey has cost us much and on top of that Kayla's ankle surgeries and her Lyme/Bartonella treatments we are currently over $40,000 in medical debt. 

Would you please pray for us to know what to do next in this Lyme journey. 

I will try better to stay updated here. Thank you for reading and praying for us. 

Wednesday, March 18, 2015

Kayla's Bartonella Diagnosis and Treatment

I wanted to write this post so that others might benefit from everything we have learned from this trial in our lives. I apologize for it being so long but I didn't want to miss any details.

As most folks already know Kayla was diagnosed with Lyme in July 2013. She was on aggressive abx for 7 weeks and went 6 months with no problems only to relapse again in March of 2014.  Then on Memorial Day she broke her ankle so severely it required surgery to fix. Both our LLMD and our PC have no doubt her Lyme disease played a huge part to her breaking her ankle so severely.

Monday, March 9, 2015

Update Daily Journal

Since last March I have kept an almost daily journal, The sicker I was the more I actually journal-ed and as soon as I started feeling better the journaling slowed down quite a bit.

There was a lot of catching up I had to do so I updated my daily journal and instead of typing everything in a post here I will leave ya'll with the link to my journal, It is entry March 9, 2015.

We really covet everyone's prayers for decisions to be made and also for financial burdens from Lyme and Kayla's surgeries.

Read my Daily Journal............

Thanking the Lord always for His provision, His guidance, and His constant love and compassion. I can't imagine walking this horrible Lyme journey without the knowledge of my dear Savior. My Rock and my Redeemer.


Monday, March 2, 2015

10 Things To Know When Someone In Your Life Has Lyme

I wanted to share this blog site as she nails it!  It is very hard sometimes to understand a Lymie. I hope you will take the time to read her blog and the things she points out. 

10 Things To Know When Someone In Your Life Has Lyme

So someone you know is sick with Lyme disease. It could be a friend, a family member, a significant other or just an acquaintance. Whoever it is, you've got some questions.  Or maybe you don't, but you want a better idea of what the heck is going on. This entry will hopefully offer some explanation, and can probably be applied to a variety of chronic illnesses.


1. Lyme disease is an invisible illness.

What does this mean? It means that when someone with Lyme is feeling absolutely horrible, they are likely looking no different on the outside than they do on one of their "really good days". This disease (usually) doesn't present itself with super obvious visible symptoms. Normally you won't see a Lyme patient with their legs wrapped up in casts or with huge bleeding gashes on their bodies. Our symptoms tend to be more internal. Things like extreme fatigue/weakness, joint and muscle pain, dizziness, nausea, anxiety and brain fog aren't necessarily easily detected just by looking at a person. It can be hard to understand how a person can be feeling so horrible when they look "fine". Often times, they even seem to be acting fine! Which brings us to point number 2.

2. Lyme patients quickly become amazing actors

Let me explain. When you're sick with a cold or a flu for a couple of days, maybe even a week, you likely spend that whole time in bed or on the couch, maybe complaining about how miserable you feel. Definitely not venturing out in public and likely not even leaving your bedroom. You probably tell your friends and family you'll see them when you're feeling better. You feel too horrible for company right now. Simple tasks like food preparation and household chores are put on hold. Basically, life is put on hold. Which is acceptable when it only happens for a week at a time, probably once or twice a year. Everyone gets sick, it's fine, it happens, it sucks, but life goes on.

When you have a chronic illness, you often wake up everyday feeling like you have a horrible flu and the worst hangover of your life all rolled into one dreadfully uncomfortable package. As easy as it would be to stay in bed and not talk to anyone or do anything, you know these symptoms aren't going to just disappear tomorrow or even next week. This means you try to push yourself as much as you can to do normal things. Some days you might not be able to push much more than making yourself dinner. Other days you might venture out to the store or to see a friend. Your friend might tell you how great you look. "You must be feeling better! You're out and about!" You're conversing and laughing and you look like you're feeling fine! Unfortunately a lot of the time, it's all an act. When you're chronically sick you learn pretty quickly that wallowing and complaining about symptoms and refusing company leads to a very lonely and isolated life. People quickly get tired of hearing you complain about how horrible you're feeling, and you quickly get tired of being stuck in bed with no company. So when you can, you get up, you go out, and you put on a show. You smile and you laugh and you act like you aren't feeling any pain or discomfort at all. It is difficult and heartbreaking to have to live your life "pretending". It's also extremely exhausting. And sometimes in the middle of this act symptoms get worse and you find it harder to appear normal. This often leads to point number 3.


3. Symptoms can come on slowly at times, but other times quickly and suddenly.

Sometimes, we are feeling okay and all of a sudden it seems like the floor has been ripped out from under us. We might need to sit or lie down immediately. We might even pass out. This can be confusing for people that aren't sick. Just a second ago we were okay. What happened? At times, symptoms really do come on very quickly. It's the nature of Lyme. It happens. Other times the person wasn't feeling well at all to begin with but was doing a pretty good job of acting fine (see point number 2). They might have been feeling pretty horrible, but not SO horrible that they couldn't fake feeling okay. Then, their symptoms got worse and it seems like they went from 0-10 in a few minutes. A lot of the time though, what is likely happening is they are going from a 7-8 out of 10 to a 10 out of 10 in pain/discomfort. They have just learned to hide the 7/10 well. 10/10 is much harder to hide, and quite frankly when you're in this much discomfort, acting fine takes a back seat to getting yourself and your body stabilized.


4. Lyme treatment requires a special diet.

When in treatment for Lyme disease there will likely be a laundry list of foods you need to avoid. If you've ever eaten with someone with Lyme, you've probably seen this first hand. Most of the time we need to adhere to a very strict, very healthy diet in order to limit inflammation and toxins in our bodies. We have enough of these to go around already from the Lyme and co-infections! Normally our diets consist of avoiding gluten, dairy, and sugar. Often times we have other sensitivities to add to the mix like soy, corn, eggs and nightshades. If it's annoying for you, take a moment to imagine how much more annoying it would be if you had to stick to this boring diet 24/7. Everyday. And be feeling like complete crap while doing it. Be thankful you're able to eat what you want and feel fine for the most part.

5. Lyme treatment causes something known as a "herxheimer reaction". 

Or a "herx" for short. Similar to how chemo makes a cancer patient feel worse, when someone with Lyme disease takes antibiotics, anti-microbials or anti parasitics that cause a large amount of die off, this releases a huge amount of toxins into the body. This basically results in all of our regular symptoms being amplified as it takes some work for our bodies to get rid of these newly circulating toxins. Often times our bodies are so overburdened that they are not efficient at detoxing these toxins well, so it's a difficult process, and definitely not an easy one to endure at all. Unfortunately, it is often necessary to push through this in order to make improvements.
6. Many Lyme patients are not well enough to go to school or work.

This doesn't make them lazy or unmotivated. When you are so sick that even simple tasks like showering and preparing meals is extremely difficult, school and work is out of the question. This is something I've dealt with personally, and even more so in the last year. I have had so many people tell me "You are so lucky! I wish I could stay home all day and sleep in and not go to work or school!" This literally makes me want to scream. I promise anyone who thinks it would be "fun" to be stuck at home chronically sick, without any obligations, is completely and totally wrong. Sure, maybe if you were feeling nothing more than a little under the weather, the first few weeks it would be nice to relax a bit. Then you'd probably go a little stir crazy. You'd be tired of boring daytime TV and hearing about everyone's eventful days out in the real world. You'd want social interaction. You'd want to leave your house! Now pile on top of that the fact that most of the time when someone with Lyme is stuck at home they aren't just feeling "slightly under the weather". They are feeling like death. Sometimes, the simple task of breathing feels impossible. This is honestly not an exaggeration. This kind of sick doesn't feel the same as a simple cold or flu. It feels like torture. Please do not minimize our suffering by calling us "lucky". Nothing could be further from the truth.

7. There is no "magic bullet" or quick fix for late stage Lyme disease.

You might be wondering why your loved one with chronic Lyme is STILL sick. I mean, it's been months, years even! Why isn't the treatment working? Shouldn't they be cured by now? The truth is there is no easy answer for those of us who have late stage Lyme. Things might have been much different for us had we been diagnosed and given proper treatment at the beginning of our illness, but the Lyme has now had months or years to run rampant throughout our bodies and it has no intention of leaving quietly or without a fight. I personally was sick for 8 years before I was diagnosed with late stage Lyme. I have been in treatment for about 9 months and have only seen minor improvements. But looking at the big picture, 9 months isn't such a long time when it took my body years to get to this state. Another thing that comes into play here is no one treatment will work for everyone. Each Lyme case is unique and will respond differently to different treatment options. Often times a Lyme patient will need to try several treatments, even several doctors or practitioners before they find one that allows them to make considerable gains. This process most definitely tests out patience. It might be testing yours, too. Again, it's important to remember that however frustrated you are getting with the lack of progress a friend or family member has had, your loved one is likely feeling 100 times more frustrated, and even disappointed in themselves for "not being better yet". Try to be patient and reassuring as staying hopeful and persevering when nothing seems to be working is difficult, but absolutely necessary.

8. Lyme disease treatment is extremely expensive, and likely not covered by insurance.

The problem with Lyme disease, is that standard treatment options are geared towards those that catch it within the first few weeks of symptoms. In most of these cases, a few weeks or few months of antibiotics are all that is needed to regain health. These short term treatments are usually covered by insurance. When Lyme disease becomes late stage however, treatment is much more complicated. A few weeks of antibiotics will not even come close to curing the patient. Furthermore there will likely also need to be adjunctive treatments added to the patient's protocol like vitamins, supplements and herbal remedies. When it comes to late stage Lyme we have to pull out all the stops to get better. Sometimes this means traveling to doctors on the other side of the continent, maybe even world. Or trying new cutting edge treatment options that are pricey and paid for out of pocket. This is a bit of a nightmare for us, as we already have the huge burden of failing health to carry, and don't need the added stress of coming up with enough money to get better. If you want to help your friend, offer to host a bake sale or fundraiser to help raise money for their treatments. It will probably mean more to them than you know.

9. Lyme disease can be extremely isolating.

When you're chronically sick, you often miss out on a whole lot. Little things like parties and get togethers. Big things like graduation and vacations. It's hard. It's heartbreaking. And it's difficult not to feel extremely alone at times. If you have someone with Lyme in your life you've likely witnessed them canceling plans because they were too sick to attend. This might have been annoying to you, but I can assure you they felt completely horrible about it and wish more than anything they didn't have to cancel on you. If you have a friend with Lyme offer to come over and visit them. Or pick up some groceries or Lyme-friendly take-out for them. Even come help them cook a few meals to make the next week easier. Help them advocate for better awareness so it's not such a struggle living with a disease so many know nothing about. Reach out to them. Try to put yourself in their position. Would you find it easier to have friends who tried to help or just ignored your situation completely? Maybe you're waiting to see them until they are feeling better. Unfortunately it could be a while. Make an effort to make it happen sooner rather than later. It will be appreciated. It will show your friend you are one of the few who doesn't abandon your loved ones when times get tough. That makes you a great friend and an amazing person. Hold that title proudly!

10. We are just regular people too, this can happen to anyone. Get informed and be compassionate.

Something I did before I got sick was take my health for granted. Sure, you hear about people getting cancer, getting scary rare diseases, going through tragedy etc. etc. But that kind of stuff just always happens to other people. Never to you, right? The truth is Lyme disease (and any chronic illness for that matter) can happen to anyone. No one is immune. Sometimes it's easier to just put this kind of stuff to the back of your mind and not think about it. That way you don't have to deal with it. But what happens if one day you find yourself or someone close to you suffering from chronic illness? Would you not want people to at least try to take the time to get informed, understand to the best of their ability, and do what they can to make it easier on you? Practice patience, compassion and empathy not just when it comes to dealing with the person you know that has Lyme, but in all aspects of your life. These traits are so important and when you have them you become an invaluable friend and person in people's lives.

Written by Lymeless & Lovely

Visit Lymeless & Lovely to read this post and many others!

Tuesday, January 13, 2015

Happy New Year and Welcome Back Anemia

Happy 2015!

So I have now officially made it past the one year mark of being treated for Lyme and Bartonella.

I certainly have many many improvements as far as the Lyme symptoms go. However I am still battling the stuff inside my head. My brain is so sensitive to the bacteria still in there and every time I start taking Minocycline I herx something terrible that I have to keep backing off and slowly going back on again. I am on my 5th round of Mino.

It's hard to believe that for 6 years I was misdiagnosed and put through so many testings and physical therapy and then after all that finally diagnosed with Lyme and treated and in less than a year so many of those debilitating, painful issues are almost gone completely. Mostly my neck pain and the right arm numbness and weakness is gone. I can't believe that I was so bad before, I couldn't lift things with my right arm or write normal as my hand would shake and quiver and I couldn't hold on to a pen normal. I looked like I had MS or something like that. Mornings was so hard as I would slowly crawl out of bed, not able to stand straight for several minutes, my routine was always walk slowly down the hall, trying to straighten my body, walk on tip toes because the soles of my feet hurt terribly, body tremors and shaking was normal while trying to get out of bed. I am so happy that I don't do any of that anymore!! What a difference antibiotics have made!

However with treatment came some new symptoms as the bacteria is being aggravated inside me and the revealing of the co infection Bartonella and then in March of 2014 we found I was very anemic.

I did 3 months of iron supplements and in August my counts were all normal! Was so excited!

However the past few weeks I started noticing the fatigue and the metallic taste in my mouth and itchy body so I decided to go get my blood drawn to make sure I wasn't anemic again. My LLMD called that evening with the results and said I was back down again, not as bad as March, but since the last blood work on August I have lost a unit of blood.

He encouraged me to find a primary care physician in my area that would be supportive of my Lyme treatment to help trace this anemia issue that seems to be affecting me. He said absolutely it is possible that there could be the presence of the co infection babesia, which is known to eat hemoglobin and cause anemia, however before he goes that route he wants to rule out anything else that could be causing the anemia.

So I am currently waiting to hear back from a doctor that was recommended to me and see if she will take me on as a new patient and work with my LLMD.

I hope to have some more clear information on my anemia soon.

I just want to encourage those who are reading my blog to make it a point this year, if you haven't already, to watch the documentary below, Under Our Skin. I am anxiously waiting to view the sequel Emergence it's not free on Youtube just yet.
It's so important to educate ourselves about this disease, especially now as we are hearing of more and more people being diagnosed every day. Just in my circles I can't count how many folks I know that have come down with Lyme Disease. I have provided the video below but not sure if mobile devices can see it, so it is free on Youtube, just search Under Our Skin.

Wednesday, December 3, 2014

I'm Still Here and Still Fighting This Battle!

Wow so it's been awhile again. It's been wonderful forgetting that I have this blog so why am I here this morning so bright and early???

HERXING! AGHHHHHHHHHHH!!!

Okay not as bad as in the past but I am on day 6 of increasing my Minocycline from one 50mg a day to now 2 50mg twice daily. My brain pressure and headache are back as well as extreme hearing sensitivity. But this time I know it's a herx and so instead of crying because I feel so bad I am rejoicing because herxing means the little buggies are being killed in my head and it's just needing to get flushed out so I can stop herxing here. The fact that I herx is always a good sign that my meds are doing exactly what they should be doing.

So I applied TONS of Peppermint Oil yesterday and took it easy. The oil really soothes and helps me to relax. Will do the same today.

My next increase is Dec 10 where I will take 150mg a day of the Minocycline. On Christmas Day I will do the last increase to 200mg a day of Minocycline.

Other than the herxing my body feels incredible. My friend at church noticed that I have so much more energy and she is right! I have felt incredible, I wake up with no pain, no tremors, no stiff neck or joints, no more knee pain, my arm and hands are normal with no tingling or numbing or any pain!  Amazing after 6 years of suffering!

God is so good to have lead us to a great doctor who diagnosed me correctly and has me on the correct treatment. The Bartonella truly has been harder to eradicate than the Lyme. And since it's in my brain it seems worse because it affects vision, hearing, overall head feelings. But I haven't struggled with slurring speech, forgetting sentences, whooshing, brain fog...I do have dizzy spells still but nothing like it used to be.

As far as current protocol, it looks like this:

Cefedenir twice daily
Clarithromicin 1 tablet cut into half, take half tablet twice daily
Minocycline twice daily
Pantaprozole one tablet in the morning
Probiotics in the afternoon.

Every night at bedtime I rub Thieves Oil to the bottom of my feet and around my neck.

So I am still here and still in this battle however I can truly say with all my heart I am encouraged as I am seeing the light at the end of this long dark tunnel I have been in for so many years! I know I still have awhile yet to go, my LLMD said I would have to be 6 months of absolutely symptom free before he would slowly wean me off any medications. So not there yet, but sure am closer!

I think of where I was just 10 months ago and I cringe thinking how sick I was, how much pain I was in and so much herxing going on I thought I wanted to just curl up and shrivel away. I do like to go back and re-read my Daily Journal here as it reminds me of where I once was and encourages me to see how much I have improved.

Sometimes I feel awful for others that I know with this same disease who don't seem to get any better with treatments. I don't understand why it works for me, even though it has been a tough journey, but others they never seem to get better. I even had to leave some of the Christian Lyme Support Groups I belonged too as I felt like I couldn't share my good news of getting better because so many are not getting better after, some folks, 10-20 years!

I am truly grateful to the Lord for getting me through this one step at a time. For directing us to the right doctor and for giving me such a wonderful, supportive family. My husband is so compassionate and so loving. I couldn't have endured so much without his constant care. My children are incredible. On my bad days they take over with cooking and cleaning. And my church family are always praying for me. I am truly truly blessed.

As I close this post, I am reminded of a beautiful sermon by one of my favorite preachers, CH Spurgeon called Beloved, yet Afflicted: Here's the ending of that sermon:

If Jesus loves you, and you are sick, let all the world see how you glorify God in your sickness. Let friends and nurses see how the beloved of the Lord are cheered and comforted by him. Let your holy resignation astonish them, and set them admiring your Beloved, who is so gracious to you that he makes you happy in pain, and joyful at the gates of the grave. If your religion is worth anything it ought to support you now, and it will compel unbelievers to see that he whom the Lord loveth is in better case when he is sick than the ungodly when full of health and vigour.    If you do not know that Jesus loves you, you lack the brightest star that can cheer the night of sickness. I hope you will not die as you now are, and pass into another world without enjoying the love of Jesus: that would be a terrible calamity indeed. Seek his face at once, and it may be that your present sickness is a part of the way of love by which Jesus would bring you to himself. Lord, heal all these sick ones in soul and in body. Amen.
Looking unto Jesus, the Author and Finisher of our faith.

Donna
My precious new granddaughter Sierra