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I visited my LLMD this week and I thought you guys would be interested to hear how it went. So, here’s the deal – My LLMD is following protocols of Dr. Fry in regards to the relationship between diet and the lyme bacteria/biofilms. The low-fat diet my LLMD has me on eliminates biofilms in the body. With those gone the antibiotics begin to finally be able to kill off the bacteria hiding and my immune system is able to begin to support itself again. My LLMD believes (and has seen this proven true with other patients) that I can now stop taking antibiotics and continue to see improvement and eventual health by continuing to strictly follow the diet, detox and support my body with a few well-chosen supplements!

Starting Monday I’m stopping antibiotics after 4 years and I’ll see how things go for the next 4-6 weeks.

I think this is fantastic, don’t misunderstand me! I’m just still in shock and still trying to make sense of it all. A year ago I was researching ports vs. piccs and now I’m researching the nutrional content of my foods. It’s a major change of mentality!

So… this is all super exciting, without question, but scary too because the idea of another relapse scares the crap out of me. I’ve done that and I don’t ever want to find myself in that position again :-/

Wish me luck, say a small prayer and join me in throwing as much positive energy and thoughts into the universe about this as you can spare!

All my love as I continue my journey to health and healing.
molly

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Update on current conditions:

Molly’s brain has been experiencing heavy bouts of fog today.

It’s fully expected to continue throughout the night and into tomorrow morning. If we’re lucky, it’ll clear up over the weekend.

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Yesterday my parents and I drove out of town to see my LLMD. It’s not too far away, but it’s not close by like my other doctor. We usually stop to stretch our legs along the way. This time we stopped at a lakeside marina with a small park looking out over the water. It was beautiful. Blissful. Calming. Centering. I could go on… But what I loved most was the swings. One of my rules in life is to never pass up a chance to swing. Just don’t. Take a moment to fly through the air, feel the wind on your face, give in to a giggle and you won’t regret it. I promise!

Well folks, my face is still twitching away. However, thankfully we seem to have tracked the problem down. First my physical therapist drew attention to my nervous system, then my local MD traced it to an adverse medication reaction which was the root cause of the nervous system being in the state it’s in, and then finally an emergency phone consult with my LLMD who (I’m grateful) agreed with the theories and decided on a plan of action. I love it when my practioners all work together. This sense of synergy really benefits the patient!

So this week I’m working on getting these symptoms calmed down. I really couldn’t continue to function in the state I was/am in; it’s just too much. I felt that I was continuously holding back the floodgates. Any time I relax my muscles, especially those in my face, the spasms start. Every. Single. Time. I’m so tense right now it’s ridiculous.

When my muscles start going it starts in my eyes. They begin to flutter. Then my right eyebrow and surrounding muscles start. It moves next to my right eye, then down to my lips. Usually last to hit is my nose. It twitches back and forth and every time it does all I can think of is Bewitched!

Wouldn’t it be fantastic if I could make some magic happen in this scenario?

I’ve always wanted to be able to twitch my nose like Samantha and clean up a mess, or find a lost object. Maybe I’d magically fill my pill containers or change the flavor of my Mepron. The list of things a girl with Lyme could do if she could “twitch” her nose with magic is endless!

The mind boggles.

I could make the battery on my kindle last longer, bring something I’d forgotten in another room right to my lap, turn off the lights off when they trigger my headaches, make my favorite movie play on tv, have the dishes clean themselves, or simply just twitch up a cup of tea when I’m feeling like a cuppa.

Endless, the list is endless I tell you!

What would you do if you could magically “twitch” your nose Samantha style?

My mom and I were discussing this in the car today. Suddenly we realized… if I could “twitch”, then I could call up Dr. Bombay!

Remember how to do it? A witch simply had to call out:

“Calling Dr. Bombay! Calling Dr. Bombay, Emergency! Come right away!”

And magically Dr. Bombay would appear in a cloud of smoke right then and there. He’d be dressed in an outrageous outfit and be understandably miffed from being dragged away from whatever it was he had been doing at the time – usually his nurse.

But then he’d pull out the professional stoppers and get right down to business. The quicker the better, so he could get back to that nurse.

He’d listen to the problem and pull out some magical, mysterious witchdoctor examination tool. Wasn’t there a keyboard he played that did something?

Before long he’d know exactly what the problem was and how to fix it! I think my chances to be cured would be much improved with Dr. Bombay! He’s got magic on his side. Centuries and centuries of wisdom. And a small flair for the dramatic.

I’d much rather have Dr. Bombay consult on my case than Dr. House (as much as I loved him) any day!

Only it was never really that simple… more often than not he required some hard to find ingredients to cure the illness. There was a sleazy witch apothecary who sold potions and ingredients. Or there was always the chance that somebody would need to go back to the 16th century or something in order to get an ingredient like the tail feather of a dodo bird.

Somebody would need to go off in search of the ingredients while the sick person waited at home, and hopefully didn’t get worse. Dr. Bombay would disappear, only to be called back when all the ingredients were gotten.

My mom has volunteered to go off on the quest in search of the hard to find, magical ingredients to cure me! She’s prepared to battle a dodo bird for it’s tail feather or blend into the king’s court in the 16th century.

What a mom!

Now I just need to get the ball rolling… next time the muscle spasms come on I’m hoping not just for a twitch, but I want a “twitch”.

And you better bet I’ll be thinking, “Calling Dr. Bombay! Calling Dr. Bombay, Emergency! Come right away!” .

All my love,

molly

I have a moment, a feeling frozen in my mind. I doubt that it will ever go away. It doesn’t haunt me. It doesn’t affect my daily life. But sometimes a memory will be triggered by the present, and I need to accept that it was part of my journey in order to move on.

I was ten or eleven years old. I’m sitting in a chair in my parent’s bedroom with tears streaming down my face. I remember vividly that I was crying because I was shaking with internal tremors that nobody could see or feel. All I wanted was for somebody to see what I felt. I wanted somebody to tell me that they knew I wasn’t lying or faking to get out of school or to gain attention. At this point I hadn’t been sick for very long (in retrospect) but it felt like it had been forever. I was miserable. I just wanted a doctor to believe me, to help me, to make it stop. Why couldn’t they see it? WHY? Tears spilled from my eyes often during those hard years.

My parents believed me every step of the way. They fought for me. I’m lucky and honest to God, I’m blessed to have them as my parents. They never gave up, and they taught me to fight for myself, my health and my hope.

Nine years later I still have those internal tremors. But as time has passed they’ve progressed. Now I have muscle tremors and spasms that are completely visible. Most days they’re minimal. I can often hide them, or hold my muscles so that they are less noticeable. Ask my best friends or my brothers if they’ve ever seen what I’m talking about and they’ll say “No”. I simply unconsciously hide most of my symptoms around people. I can’t help it.

Yesterday one of my practioners was working with my face and head. Not even five minutes later my eyes, eyebrows, nose, lips, and cheeks were in spasm. They began twitching uncontrollably for the next hour and a half. Soon my arms, shoulders and legs were jerking. The more I tried the relax my face they would act up again. I’d take a deep breath, release, and then a moment later they were back. It’s an odd feeling of vulnerability. I wasn’t afraid to let them happen yesterday, but they were exhausting. I left the appointment completely done-in.

As I lay on the table I was struck with that memory. The odd juxtaposition of my feelings nine years ago with my habit of hiding these tremors today occurred to me. Now I have that vindication. Doctors and those providing care on my medical team do acknowledge that these tremors exist. They are no longer in question. These people believed me and now they can see it with their own eyes. It’s been proven that I was never the young faker trying to gain attention or get out of school. I was a girl who needed help that I didn’t receive until it was long overdue.

So in that light not only do I have feelings of vindication now, but I have a sense of exasperation. I simply shouldn’t have had to wait nine years.

Now my sense of fairness to my younger self is troubling me.

Do I want people to see these tremors? Do I acknowledge her wish? Or do I continue to allow myself to put up a front, a different face now in the present? I don’t know. I almost hesitated to write this post because I don’t know what my final feelings are about this. It’s an internal question that I’m going to have to work out for myself. So if one day you see me and notice these muscle spasms, know that either I’m too ill to control them or, more hopefully, I’m acknowledging that little girl inside me who only wanted to be heard.

 

xo,

molly

I have both exciting and nerve-wracking news share with you! My current LLMD has been recommending that I seek a consult with a more specialized  and experienced LLMD since last winter. We’ve been putting off this move because, quite honestly, the expense of a non-insured LLMD is astronomical. However, my health has been steadily declining since January of this year. In fact, I’d go so far as to say that 2011 has been one of my absolute worst years in the course of my illness. My LLMD has admitted that I’m beyond her abilities at this point.

We took the plunge.

An appointment with a new LLMD was scheduled. The only problem? I was distraught to hear that I wouldn’t be seen until December. I knew I didn’t want to go on living like I have been. I hoped for something – just something – to surface. 

And, here comes the exciting news – it did! This week we received a call saying that if I wished I could take an appointment that was open after a cancelation. We took it!! I see the new LLMD next Wednesday, the 7th of September!!

Please keep me in your thoughts and prayers sending positive, healing vibes for next week’s appointment! I’m hoping to receive some expert guidance and a new treatment protocol.

At the moment I’m feeling overwhelmed with the intense paperwork required, the tests I haven’t had done yet, and the thought that I have a 3 hour appointment ahead of me where my whole story and every single symptom from the last three years will need to be retold and analyzed. I’m excited, nervous, and crossing my fingers that this doctor will finally hold the answer I so desperately need.

I’m taking many, many deep breathes, drinking tea to soothe my stomach and my soul, trying to recapture lost memories, and generally taking this all as it comes. One action, one thought, one moment at a time.

 

With love,

molly

 

“May the pain you have known and the conflict you have experienced give you the strength to walk through life facing each new situation with courage and optimism.”

One of the worst aspects of Lyme is the setbacks. Lyme is a disease that keeps on giving – one new symptom after another.

I’ve been quiet for so long on this blog, but I’ve thought about it and you who read it, nearly every week! I spent a long time this afternoon going back into my archives and rereading many of my posts. I’ve had so many up’s & down’s while treating this disease, I’d forgotten most of them. Perhaps I chose to forget them, who knows.

I think it’s time now for me to post an update on my progress and my life (or lack thereof) since it’s been so long since I have.

2011 has not been the best year for me, medically speaking. It feels like one big experiment-gone-wrong. I don’t remember a time this year that I fell well, really well. And it’s June already. Half of the year is gone!

I’m going to be honest. I feel worse now that I did at this point last year. Last summer I was in much better shape! I was excited and felt like I was finally on the right track in my treatment. Now fast-forward to this spring… I’m having a repeat of spring 2009. I’m going through the exact same symptoms, diagnoses, and experiences. I feel as though I’m reliving this part of my treatment.

Today is day 36 of a life-consuming pressure headache. At times, I’ve become non-functioning because of the pain of this headache. Some of you may remember I went through this in 2009 as well. My POTS (Postural Orthostatic Tachycardia Syndrome) is back with a vengeance, and my fatigue is insane. I don’t know about you, but I live on my couch. We have a symbiotic relationship.

Since I was following a similar pattern to 2009 we immediately thought of my eyes. Were my optic nerves swollen again? So in I went to be checked out. After many weeks of patience, and follow-ups, I was told on Friday that I need another spinal tap. I had 3 in 2009. I was really, really hoping those would be enough for a lifetime! I’m scheduled to have my 4th done this Thursday morning. Better sooner rather than later. I’ll know the results sooner this way, and hopefully have some answers. My neuro-opthamologist is LL and is concerned that I may be experiencing pseudotumor cerebri, a condition where the brain behaves as if there is a tumor present, but there is none. The number one symptom of this is unexplained increased intracranial pressure, which is what the spinal tap is for on Thursday.

However, I don’t know what to wish for. Do I want to have pseudotumor cerebri – another medical condition that is reversible, but needs medication and/or invasive assistance? Or do I wish for a normal, low pressure from the spinal tap and therefore have all of this be attributed to random Lyme-related symptoms? I just don’t know.

In addition to that development, I’m now completely off of my Lyme protocol. My LLMD and opthamologist told me to back off for now until things calm down. I was put on beta blockers a few weeks ago to calm my rapid heart rate and I’ll be referred to a cardiologist sometime this summer. I think the beta blockers have helped the POTS a bit and the fatigue, thankfully! My LLMD believes that m adrenals are a problem again and I’m most likely iron-deficient. I had a slew of blood tests done on Friday and I’ll learn more in a few weeks.

I’m afraid my LLMD is feeling overwhelmed by me. I’m not getting any better yet, and she’s afraid of making me worse. I’m taking this all one day at a time, but I really am beginning to feel overwhelmed myself!

I’ll be back soon. I’ve missed you all!

Wishing you health & healing,

molly

 

Every day is a journey filled with twists and turns. Every day, if you smile, you will feel alive, my son. — Santosh Kalwar

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