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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.”

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Moments of true silence are a treasure to me. I feel like I’ve received a present I had forgotten to ask for. After seven years, I hardly notice the ringing in my ears anymore. It’s not constant. At times it gradually becomes worse enough for me to notice. Time passes. I muddle through. Next thing I know, I suddenly don’t want to bash my head against a wall any longer. It’s quiet. Silent. Calm. Peaceful. It’s wonderful.

I can go months without thinking about it. Then… BAM. It hits me. The world isn’t buzzing. There is no small hum. There are no bells, no rings, no creaks.

Didn’t I say it was wonderful? Sigh.

But it’s the small things that keep us going. I’ve learned not to take the silence that I’m given for granted.

I love to listen to the quiet.

I feel like I could bask in it.

I can hear myself think.

Then reality tumbles in and breaks me out of my reverie. The clock is ticking in the room next to me; the refrigerator is kicking in, ice is dropping; the heater floods on; a cell phone vibrates and the computer begins humming.

My head begins to throb again.

The world is a loud place. On the other hand, so is my head. It’s still a moment to celebrate when one of the two calms down. For now, the moment is lost. I’m waiting for the next one. Waiting, and wishing.

It’s November. Eleven months into my treatment, and tonight I’m simply staring at my handful of pills, tablets, and capsules. I’ve become accustomed to this ritual. And yet tonight feels different. I don’t know what I’m expecting to happen. But I’ve got that daunted, overwhelmed feeling.

I’d forgotten this feeling. For me it’s the mark of starting new treatments, new antibiotics. It’s a new phase of treatment, and it’s scary.

I had an appointment with my LLMD yesterday. My mom had her 1st official Lyme appointment before me, and then it was my turn. She has finally decided to go ahead and treat her Lyme, slowly but surely. She’s starting with several herbals from the Cowden protocol. {I think!} She’s working on a schedule to keep it all straight, and I’m trying to help as much as I can. Having two Lyme brains working on this has got to be better than one, right? Too bad she’s not blogging about it!

So, my appointment was next. I was feeling great going in. I was expectantly waiting to hear her thoughts on my treatment after going to the ILADS conference. Her plan was to wait until afterwards to begin treating my Babesia and hopefully gain some new information and insight. And, boy, are we going to treat it! She was ready with a plan of attack.

Just as a reminder – Babesia is a common tick-borne co-infection. It functions as a malaria-like infection that thrives in the red blood cells. I received a positive Babesia test result a few months ago, but haven’t talked much about it on here since I wasn’t actively treating it yet.

I’ve been on a very low dose of only one antibiotic since June, Azithromycin. My new treatment is bumping that up to a normal dosage, and adding in two more new antibiotics to target the Babesia. Yesterday I began taking Bactrim, and today I’ll begin the infamous yellow liquid, Mepron.

In addition to these antibiotics, I’m still taking the herbal microbial Cumanda which is targeting the Lyme, Babesia, and my 1st co-infection, Bartonella.

I’m scared of this. I don’t know how I’ll react. How much sicker will I get before I see some more improvement? How long will I be on these medications? Will I be able to finish my semester of school? But, no matter the answer to those questions – I’m ready for it. I’m ready to start this new phase. The sooner I do, the sooner I can get better. It’s time to kick some Babesia butt!

Tonight I’ve nervously taken my 2nd dose of Bactrim. I say nervously because we’re afraid I’m already having some kind of reaction to it. About 6 pm tonight I was almost doubled over in the grocery store with stomach and abdominal pain. It has calmed down for now, and I’d love to not be woken up by it!

I’m crossing my fingers, saying a prayer, and setting some positive intensions.

I’ll be back later this morning with a Mepron post! {Cough-cough-GAG!}

 

Peace and healing, molly

I don’t know what else to call it at this point. All anyone and everyone is telling us is that we’ve got to wait until Mayo. After that, who knows. I’m not guessing.

 

My LLMD changed her mind this morning while talking to my mom. After thinking about it, she wants me off not only the Levaquin, but also the Azithromyacin and the Samento {Cat’s Claw}. So, no more antibiotics for me until we figure out what’s going on. She’s worried that what we’re doing might be causing my intracranial pressure to continue rising. She firmly believes that the die-off and the infection are the cause, but of course she’s waiting to hear back from Mayo too. Better safe than sorry. There isn’t a lot of case studies about rising pressure and Lyme Disease. There just isn’t. She’s scared however that Mayo won’t consider that my problem is an infection. Personally, I think that it’s not just a coincidence that I’m having this problem now after I started treatment. I don’t see how either the Lyme itself, or the treatment, isn’t contributing to the issue.

 

So my doctor’s plan is to take me off all my medications that could be contributing to the rising pressure. If My pressure is still high at Mayo next week, then we know the meds aren’t the cause. If it isn’t, then we move on from there trying to find a treatment plan that will still heal the infection but won’t have the dangerous side-affects I’m dealing with now. A waiting game, right?

 

I’m nervous about how my body will react after being taken off the antibiotics. Many people herx pretty badly afterwards. But I’m not sure what to expect. I wish the timing was better. I’m enrolled in summer courses right now, and really need to be able to work on them. I only have until the 26th to finish them. And shhhh but I haven’t started yet. The LP got in the way of that.

 

And I’m still recovering! Today is much better than yesterday so far. My back is less sore, and so is my nerve pain. Now all I need is to NOT get the spinal headache and I’ll be all good!

 

Peace and healing, molly

“How much of human life is lost in waiting?”  – Ralph Waldo Emerson

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