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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
This morning a cloud lifted and let a few precious rays of sunshine into my life, even if it was for just a few hours. Today was one of those rare days amid Lyme Disease treatment that reminded me what I’m fighting to have. I felt human today.
It was wonderful not to feel like I have lately. And not to look like I do in this picture! These last weeks have been some of the worst I’ve had in the past 2 and 1/2 years. And so, I had to share this moment of celebration with you all!
I’ll be back soon to update you all on what’s happened lately. Friday is a big day for me. I’d appreciate if you could say a prayer, send some love, light, & support my way. Or just keep me in your thoughts!
Much love.
molly
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!
Much love,
molly
“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…
February 12, 2010 in Living Life Tags: Feel Good, Healing, Inspiration, Lyme, Lyme Disease, Photos, Positive Thinking, Quotes, Smile
37/365 – hello sunshine!, originally uploaded by orangesparrow.
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
(via Shawna Lemay on Flickr)
I think those of us with invisible illnesses understand this quote more than the average person. We quite literally live it. Thank you, Plato :)
In other news – I’m off to my LLMD this afternoon. I’m crossing my fingers! It’ll be my first appointment since stopping all my pharmaceutical antibiotics last month. Many symptoms have lessoned, and a few old ones have resurfaced. I’m not sure what to think. I’m trying to go in with an open mind.
I’ll be back with an update soon!
Much love,
molly
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.
Much love,
molly
I'm in the Lyme-Light 
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