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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.
Those are the words that my LLMD said to me last week. “We’re finally winning.” I can’t even begin to describe what hearing that was like. I heard the words; I smiled. But those fantastic words didn’t sink in right away. I felt… like I was staring down a beautiful cliff, unsure of what I was doing there and what I should be feeling – awe from the spectacular view or fear from being so close to the edge.
I was talking to another Lyme friend of mine recently about how hard it is to trust those words I was told. Here’s a snippet of what I said, “I haven’t ever lost hope of recovery, but somehow this feels different now. It’s not sometime in the future. It’s starting right now. I want to accept that gratefully, but I’m still protecting myself from the possibility I’ll get worse again. It’s a fine line…”.
Like I said, I have never lost hope. I believe that we will all find days of health ahead of us as we recover from these life-altering infections. We will.
However in order to function each day, in order to allow myself to put one step in front of the other, I do have a wall of protection that I keep up. Maybe that’s a good thing, maybe not. I don’t know. But I know that it’s there.
I think it was the day after my appointment that they finally began to sink in. I gleefully told my acupuncturist about it the next morning, and I remember the joy in the conversation. I could feel my face light up. That was the first moment it felt real. I hope I never forget that feeling!
Now I think I’ve accepted the fact that I am actually improving. I’m not feeling much of a change in my symptoms, but I can only hope that soon my body will catch up and give me a much-needed break!
I haven’t blogged much this year. I simply haven’t felt up to it. Computers often make me sick, and my symptoms have truly overwhelmed me in the past few months. However, I’m thrilled to say that this week I’ve felt better. I’ve had more energy, and my mental clarity has felt just a bit sharper. I’m even happier that I’m feeling better today of all days.
Today happens to be my birthday.
I think that feeling the way I do today will be one of the best gifts I’ll receive!
Today I turn 20. Where all the years have gone, I have no idea. I wish I could have a few of them back! I feel older than my age, not surprisingly. But I’m so glad that in reality I am just 20 and not 83 – like I feel many days. My wish this year is that I’ll finally be feeling well enough to live a little. I have dreams and adventures, things to do and places to see! I’d like to start crossing things off my bucket list! If today is an example of the year ahead… I think my wish will be coming true : )
Another phrase my LLMD said to me in my appointment has stuck with me also. She said, “You’re doing amazing.” Imagine that… I’m doing amazing! I think she was as surprised as I am.
I’d like to celebrate my new year each amazing moment at a time. I’m going to savor them.
Peace and healing,
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,
Every day is a journey filled with twists and turns. Every day, if you smile, you will feel alive, my son. — Santosh Kalwar
Yep. I went MIA again.
I had my wisdom teeth out a few weeks ago, and I’ve been recovering. Slowly. Very, very slowly. I (of course) had some complications after the procedure and I’m not healing as quickly as I’d like. Hopefully just a few days more, and I’ll be back to my normal self.
Hope everyone is having a lovely weekend!
“The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.” – Philipus Aureolus Paracelsus
I thought it would be fun to look back and see what I had posted on this day last year. Oddly enough it fits with my day today perfectly!
So I’m sharing it with you again.
Let me just say…
Good morning! Thought I’d pop in with a smile. I hope you have a absolutely lovely day today! Inspire others. Find your joy. Search for peace. And let Lyme slip away from your thoughts for a moment. We all deserve a break!
I’m working on an update for you all. School deadlines have got me exhausted this week, but it’s coming, I promise! Oh, how I’m looking forward to a nice three day weekend.
Much love, molly
"MAY THE SADDEST DAY OF YOUR FUTURE BE NO WORSE THAN THE HAPPIEST DAY OF YOUR PAST." – IRISH BLESSING
There’s a running joke in my family that I’m a “medical mystery”. I went from normal to suddenly, devastatingly ill far too quickly. No doctors could fully answer all of our questions. I was bounced around from one specialist to another for years. I was unhappy, and honestly, I was angry that nobody could find a solution.
That is, until two years ago.
I began my Lyme disease journey on January 1st, 2009. I still remember staring at that blue Doxycycline capsule for a long few moments before I finally took the plunge and swallowed it down, along with some apprehension and a lot of relief. Finally somebody had looked at me as a whole, sifting through the symptoms and found an answer for me!
Lyme. Bartonella. Babesia. The list goes on.
Two years later I’m still treating. And, it turns out that I’m still that “medical mystery”. Above all else in a doctor I want them to be honest with me. I need them to talk to me so that I learn to trust them and they trust in me. I love my LLMD dearly. She has been a rock in this journey. However, she’s not strictly speaking an LLMD. She treats Lyme, but not exclusively.
In January she was honest when she turned to me in her office and told me that she didn’t know what to do next. Her treatment regimens weren’t working with me as she had expected them to. She is afraid of making me more toxic, creating more harm than good. I don’t blame her. I just wish this weren’t the case.
She wants me to visit another Lyme specialist for a consultation and receive a second opinion. I was instructed to see a neurologist for my headaches, and to see my neuro-ophthalmologist for a check-up. I feel as though I’m back where I was two years ago, being doled out to different specialists while they scramble to solve the puzzle.
Molly, “medical mystery” at your service.
I haven’t lost hope. No, as I said last week -“I feel as though I’m adrift. I’m bobbing along in the waves waiting for the clarity that calm waters will bring.”
I’m waiting for my turn to discover those calm waters.
“Everything will be okay in the end. If it’s not okay, it’s not the end” ~Unknown
I’ve always been a firm believer in the knowledge that life isn’t all black and white. We live in the gray, and we make the best we can of what we’re given.
However… I never thought that the concept of being “healthy” would appear to me as something nondescriptly gray. Theoretically it’s such a clear-cut, simple issue. Not always so.
I feel as though I’m adrift. I’m bobbing along in the waves waiting for the clarity that calm waters will bring.
I have so much to share with you! You’ll have to be patient with me as I grapple with the correct way to explain what has happened to me in the last few months of my Lyme treatment journey. Tonight, I’ll share the most important part.
My doctor and I (for various reasons I’ll explain at some point) decided to take me off of all my pharmaceutical antibiotics this month. It’s been just over two weeks now, and I’m lost. I have absolutely no idea how my body feels about the change. I have had such trying months since November, that I was truly not sure what to expect.
I’m being treated for an intestinal yeast infection in the interim. Which – if I may sideline for a moment – sucks! My abdomen is still swollen and I believe I had a significant herx right after beginning treatment.
Since the 11th I have had days some good days, and some horrible, and too many in-between. Nothing is constant. I’m searching for clues, taking mental notes, observing myself. Some symptoms are better and others are worse.
I’m adrift, keeping my head above water in the gray. I’m frustrated. But at least I’ve earned myself a medication vacation for a while :)
Wishing health & happiness abound,