Lyme Update

 

Click here to see a live video of spirochetes

In January of this year after an amazing natural doctor diagnosed me with Advanced Lyme Disease when no other doctors knew what was wrong with me, I started on IV treatments and other natural remedies. After several months, I then decided to go ahead and do antibiotics in conjunction with the natural protocols I was doing. From everything I have read, that was the best and most efficient way to kill the bacteria – hit it hard with all the resources available. So I did. I didn’t see immediate results but started having more good days than before and was slowly but surely getting my energy back. I had injections that eased my joint pain and things were going in the right direction.

But then I crashed. Hard. In fact I started doubting everything I was doing. I began having pain and debilitating fatigue again so I assumed it was the Lyme and worried that all of the treatments and months of antibiotics didn’t kill the spirochetes. Last week, an arthritis specialist wouldn’t even give me a mild pain medicine for the severe joint pain I have been having. I just wanted relief and I thought I was back to square one.

Today I went back to the doctor who originally diagnosed me to see where he thought I should go from here. First he checked my blood to see if the bacteria was still present. There was no trace of it. It does have the tendency to go into cyst/granule form during antibiotic treatment but at least there were no more spirochetes swimming around like before. The last time he checked it in April, there were cyst forms, so seeing absolutely nothing was huge! It means the bacteria has died or gone dormant because their host (my body) was not a viable place to party anymore.

My cells were much healthier than they were the first time I saw him, as well. But he did find that I was very anemic and severely dehydrated even though I drank several glasses of water before seeing him this morning. My kidneys and my adrenals were not doing well either so that contributed to my pain and fatigue. A body with a chronic illness has to work much harder than a healthy body and all the years of having the Lyme bacteria in my system caused my organs to be very weak and not function efficiently. I think my body is just totally worn out from trying to fight this disease for so long. I have a new plan set in place and something I can proactively work on to get to a place of better health. My body might not ever be back to the way it was before Lyme, but this gave me hope that I can achieve something better than where I am today.

I am a visual learner and I thought it would help others to understand this disease a little better if there were pictures. I got the pictures of my blood samples today so here are a few of the very first ones that revealed what was causing my 50+ symptoms. Remember these spirochetes can go anywhere. Because of their shape they can “drill” their way around the body – in the blood, tissue, organs, brain, joints – anywhere and everywhere. This is why tick born illness causes so many different symptoms.

January 10, 2012 – my first blood sample

A Lyme spirochete (Borrelia Burgdorferi) in my blood under the microscope

January 20, 2012 – second blood sample

Many spirochetes (all of the long “wormy” looking creatures) in my blood
And more…

Also, note that these samples of blood are all magnified over 100x and it is one tiny drop of my blood, less than the size of a pea. I don’t want to imagine how many I had in my entire body if this is how many of these suckers were in one drop of blood!

You can see in the slide above just how damaged my blood cells were. Blood cells are supposed to be a clean round circle and almost all of mine were very “furry.” This is a sign of a severe bacterial infection.

The sample below was taken a few months after starting treatment. There are still many spirochetes (the two at the top in the middle are trying to get into a blood cell) but you can see that the treatment is making my cells much healthier which means it was becoming a terrible environment for the bacteria to live in.

spirochete in the middle – attached to my cell

September 26, 2012

Healthier cells than ever before and no sign of spirochetes!

The difference between the samples is pretty amazing. I may have had a terrible office visit last week but I had an awesome one today with a doctor who truly cares about my well being. God is there in our darkness and He is there in our pain. He knew I needed something positive in my life right now and He showed His love to me through a doctor who showed empathy and kindness, who wants to get to the bottom of why I’m still having joint and muscle pain – a doctor who will fight for me.

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Be Kind

It’s 2am. I’m in pain and I’m mad. I’m mad that Lyme is keeping me up once again from the rest that I so desperately need. The pain is in full force but writing keeps me distracted and distractions help almost more than the Advil which is all I have to take at the moment. Pain meds would be wonderful but my current doctor is not giving them. Instead he is sending me to a specialist who I have waited weeks to see. I am told he will be able to prescribe me something for the pain but I don’t know if this is true or why I need to see yet another doctor. I do know that I don’t have rheumatoid arthritis. I have Advanced/Chronic/Late stage (pick a word, any word) Lyme disease and what I need is some relief from the pain.

I am also upset that my pain comes at very inconvenient times. It messes up my plans, church responsibilities, family responsibilities, my daily normal routine and my social life. I am mad that I can’t trust my mind to work the way I’m accustomed to it working. For instance – before spell check this post is full of typos and spelling mistakes because I can’t even remember how to spell simple words sometimes. I can barely think in complete sentences when the pain strikes and if it’s accompanied by nausea, my day is completely wrecked. The past couple of weeks have been hard because my illness is becoming unpredictable again and I absolutely HATE that. I hate that I have had to cancel and drop out of things I committed to do because I cannot physically do them. I really can’t stand it that my passions and the loves of my life are affected by this awful illness.

However, I think one of the hardest things to go through is the disbelief of others – the questioning looks, the “but you look great” comments that are so often heard by chronic Lyme sufferers.  Last week, my illness was totally minimized in a way I had never experienced before. I have had doctors look at me and think I was crazy. I have had them tell me they weren’t going to help me anymore or run tests for my “symptom of the week.” They have asked my husband privately if he thought I was making everything up in my head and they have told me to my face that I am just depressed and that is all that is wrong. Do you know what it feels like be told you are crazy and you aren’t really sick when your entire body is aching? It is a very isolated and lonely place. But with those comments, I could chalk it up to doctors that couldn’t figure out what was wrong with me so they wanted me to feel crazy instead of realizing that they were not God and they didn’t know everything. I could rationalize their reactions to my pain especially when I finally got a diagnosis – yay, sweet validation!

Last Tuesday I struggled to get out of bed with joint pain and muscle stiffness. It felt like gravity was against me and weights were on my back as I slowly got ready for the day. There was no time to rest or take my time on this day because I was scheduled to volunteer at the girls school and I was determined to be there. After the teacher showed me what to do, I sat in a little chair at a desk outside the classroom and proceeded to make booklets and cut out letters for the bulletin boards.

I sat next to a mother of a child in a different class. I had volunteered with her before when my oldest was in Kindergarten but she didn’t recognize me. My mind was very foggy but I tried to be friendly and think of things to talk about. I did not feel good at all and was very uncomfortable but pushed through the pain. As we chatted, something in the conversation led to the upcoming fall field trip and she asked if I was going. I told her I couldn’t but that I really wanted to. Then she asked if I was the room mother for little C’s class. I told her briefly that I wanted to be but was unable because I had been chronically ill for quite a while with Lyme disease and at the moment, I couldn’t trust my physical abilities from day-to-day. I didn’t really want to tell her these things but they slipped out before I had a chance to think through what to say. I’m not in the habit of telling strangers or even acquaintances about my disease but there it was, partially laid out there in the open. And before I even had a chance to regret saying the words “chronic” and “disease” she said with a laugh, “Oh! Well, maybe that’s what I have because I’m not feeling great today either.” This was after telling me about how even though she is a stay at home mother, she has a part-time job because she can’t stand to be at home all day and has too much energy so she likes to keep busy all the time. Something that, at the moment I can only longingly dream about. She finished her tasks quickly and left for work.

This may not seem like a big deal but most days I have to mentally and physically prepare myself the day before I leave the house for a two-hour “trip” to my girls school that is just down the road to cut out some letters and sight books. When I get home from simple activities like going to the store, I feel like I’ve run a marathon and it is vital that I don’t schedule anything the next day so I can rest up from my “day out.” At times, it feels like my body is my own prison from which escape is impossible.

For some reason, the flippancy of the words pierced me differently than any response to my illness has so far. I know she was probably just uncomfortable talking about sickness – most people are. She may have just meant to change the subject and I’m sure she didn’t mean for her words to come across harshly. But I felt really small in that moment. I think it was made worse because it was coming from a woman, a mother and someone who is in the same stage of life as myself. It stung and pricked my heart. It hurt to hear how others may view my illness. In a heartbeat, everything I go through was minimized. I felt like I was minimized.

The pain, frustration, and heartache that I have become accustomed to was laughed under ones breath as if I had apologized for having a runny nose, grabbing a Kleenex and popping a Day Quil – because that was something she could relate to. She heard what she wanted to hear because we don’t want to think about stuff that hurts or makes us uncomfortable. She didn’t want to talk about disease or pain or being taken out of life. Neither do I. I desperately wanted to be the energetic mother about to leave for work. I sometimes wish to be on the other end of the conversation. When someone mentions disease, I want to be the one that can’t relate. How I would love to be unable to understand what chronic illness is all about. But I do – too well and I want others to learn from this conversation that inadvertently hurt. When someone is telling you about something hard they are going through, something that hurts and is awful – just listen to them. Maybe it would help to imagine it happening to you or your loved one, even if you “can’t imagine what they are going through” don’t say that because it  isolates and makes others feel very alone in what they are dealing with. Tell them you are there for them. Tell them, “I’m sorry you are going through that” or “that must suck.” Even a simple hug or note does wonders for me on my bad days…and my good days. Just be kind.

That’s all. Thanks for letting me vent. I think I feel better now. :)

This makes me laugh. ;)

 

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