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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.
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,
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
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!
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,
“Each time we face a fear, we gain strength, courage, and confidence in the doing.” -Unknown
It’s so hard to gauge where I am in my healing process. And. it’s hard to admit that, too. I’m functioning… to a point. I’m not spending every waking hour on a couch anymore. But I’m not even close to feeling how I wish I were feeling. I like to think that I’m in touch with my body. I have an awareness that it’s taken me years to become comfortable with. Lately, I feel disconnected.
I’m not even sure I can put my finger on a the words to describe how I feel.
At my last LLMD appointment my doctor looked at me and asked me honestly what timeline I had in my mind for continuing treatment. I was quick to say that I didn’t have one. I know that I’ve got years, and years ahead of me before I’m where I need to get. I went untreated for sixteen years. I’d rather not disillusion myself about that.
After some discussion we decided to back down on my treatment. Again. It feels right to me, yet at the same time it’s so absolutely counter-intuitive. My first reaction is to treat the crap out of these infections. The harder and quicker we do that, the sooner my life will be in my own hands again. I’m doing my best to not disillusion myself here, either.
Sometimes it’s just time to walk away. Find the next window to climb through, since doors seem to be barred.
My LLMD uses both traditional antibiotics as well as herbals to treat Lyme. I’ve always used both in my own treatments. I felt that taking the middle road worked for me. It made sense.
Last month I stopped taking the herbal tinctures. I still have supplements galore, but the tinctures were too much for my poor body to handle along with the antibiotics. So for now I’m depending on my three antibiotics to do their job… and I’m doing the best I can to cope with the havoc I feel within me.
I’m having migraines again. They suddenly reared their ugly head last month after about 5 months without them. Needless to say, I was not happy to have them back. When I’m not having a migraine, I’ve got a headache. Always. I have had rashes appear overnight. My abdomen is swollen again. I ache. And I cannot for the life of me stop sweating. (Yes, I know that’s gross. I also know many people reading this will understand.) Hot sweats, cold sweats – you name it. They won’t stop. It’s incredibly uncomfortable, let me tell you! I can be at home resting, out with friends, or just sleeping, and I’ll break out in a sweat. UGH. On top of that I still haven’t gotten rid of the shakes.
These things could point to toxicity and my body trying to detox it. Or, I could be having a herx. I’m really not sure! My LLMD was worried about neurotoxicity at my appointment. By no means am I an expert… but that just doesn’t sound promising…
My next appointment is in January. Actually, I think this is awesome. My appointment is on 1-11-11 at 11 o’clock. Totally by accident too!! We’ll see what happens then. In the meantime, I’m going to do all I can to help myself make it through the craziness that is the holidays.
Today was actually a great day! I took it easy because last night I went out. I’m SO proud of myself. I managed to take a shower, wash my hair, get dressed, make lunch/dinner, clean my room, and reacquaint myself with my make-up – all before I went out to surprise my brother for his birthday. My sister-in-law arranged for family to meet him at his favorite comedy club for a show, and he had no idea!! It was so much fun! I haven’t laughed that much in ages – and those that know me personally will vouch for the fact that I laugh a lot! I’d never been to a live comedy show, either. So it was exciting :)
I was worried that today I’d be paying for it, but I feel pretty good! I’ve got my normal headache, and I’m a bit dizzy when I stop and think about it. Oh, and those sweats haven’t disappeared. But I was expected much, much worse. YAY!
I woke up late this morning. The house was empty, and peaceful. My whole day was like that. I even felt a huge creative spark this afternoon. I sat down with my beads for hours. It felt so good! I think it had something to do with the fact that today I’m wearing my purple leggings… color always inspires me.
I’m hoping the rest of my week will continue to look up!
Peace and healing,