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School begins in a week. I checked, it’s the 8th. For weeks I’ve put off looking up which day it is that I start my senior year, hoping, and yes perhaps clinging to the idea that if I didn’t know the actual date my lingering last weeks of summer would last longer. If that piece of logic escapes you, please don’t ask me to explain further. I’ve often been told I have a very original sense of logic. I like it, it suits me just fine!

 

As I sit here writing this I’m up at my cabin for the last time this summer enjoying a relaxing weekend escape. My dad jokingly kicked my mom and I out of the house on Friday morning, taking the opportunity to work on a few projects around the house.  My brother’s wedding is sneaking up on us in a few short weeks and we’ve got plenty to do still! Obviously my mom and I had no arguments and gladly escaped! The weekend has been a wet one, with rain almost every day. Since rain = pain I’ve been a little uncomfortable, but it’s been nice all the same.

 

We didn’t arrive here until late Friday night, but luckily I’d packed enough gluten-free snacks for the car that we didn’t have to stop to eat on the way. We’ve gotten sick too many times trying to do that. We’re learning, slowly but surely. Then as we ate our small dinner that night we caught the amazing Packer’s pre-season game!! Yes, it was amazing. I screamed so much I was afraid I’d go hoarse. You’ve been warned – I am a Green Bay Packer fan, and I’m proud of it. And yes, I do live in Minnesota the new home of Brett Favre. But, I’m not going to go into that here – I really just enjoy watching the games, not talking about the politics.

 

Yesterday we spent the day inside, snug and cozy watching a few Alfred Hitchcock movies (my favorite!) and reading our books. What would a vacation be without some reading time? Then, a delicious dinner and we spent the evening listening to my cousin play at a local bar. That was so much fun! I love listening to him play, and it was fun to hear some new songs from him. I’m impressed with myself too though. The bar was loud, had ceiling fans, and cigarette smoke. All of which I have issues with! But last night, I had a great time and only had a few minutes where things seemed overwhelming. I spent much more time laughing, smiling, and clapping than I did thinking about how I was feeling. It was nice to get out, and let go for a night. Usually I’m very aware of how I’m feeling at any given moment. And it gets tiring, ironically enough.

 

Today I did feel a little worse for the wear, sleeping in late and waking up in pain. But today was an important day. Today was the day we decided that I would start the Cumanda tincture I’ve talked about. I’m not sure what to expect, a huge herx or nothing. Either way, I’m taking a super low dose of 1 drop twice daily to begin with. On Wednesday morning I’m going in to have my co-infection panel. We’re hoping that the Cumanda will help bring out a reaction in my immune system that will show up in the blood test.

 

I’m praying, for what I’m not exactly sure but I’m praying about it all the same.

 

It’s been a nice weekend, but it ends tomorrow morning. Back home and back to summer homework for me. I’m thankful we got the chance to make it up here once more though. I love it here. It’s very grounding for me. I seem to get lost in the time I spend here. It slips by so fast! And I’m glad I got the chance to spend some time with my great grandparents today too. One small hiccup- it was too cold to swim! This is August still, I should have been able to swim! But, no. The weather certainly didn’t cooperate.

 

Peace and healing, molly

 

“Love life, engage in it, give it all you’ve got. Love it with a passion, because life truly does give back, many times over, what you put into it.” ~ Maya Angelou
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rain … Come again another day! Or, you know, not. That’s good too. My mom and I commiserated this morning over our rain/weather-induced pain. I just hurt. I ache. At times, I even throb. My head feels like it could pop right off at any moment from the pressure. My energy levels are spent. Today is one of those days that I was hoping to get a lot done, and I haven’t yet accepted the fact that most of it won’t happen. Instead I just want to make my new favorite popcorn {black pepper!} and curl up in a pile of blankets with my new DVD set of Hitchcock films. That sounds nice, doesn’t it? Days filled with dark, stormy, wet weather and high humidity levels are energy-sucking days. I don’t function well in weather like this. Yesterday I was surprised how “normal” I felt in spite of the tornado weather and unrelenting rain fall. Today, I’m taking the beating.

 

And do you know what the kicker to the rain is? The sound of the constant water falling to the street in sheets, hitting the windows, and over-flowing from the rain barrel outside the window is actually making me have to pee even more! Now not only is my inflamed gut pushing down on my poor bladder, but the rain is like a mental trigger each time I stop to enjoy the tranquility of the sounds! Let’s hope I don’t pee my pants from laughing at this little irony.

 

To fully distract myself I’ll move on to another subject. Yesterday I shamelessly dangled a hint of my good news in front of your eyes. For those, like me, who might need a reminder: I think that’s all I can update for now. I’ve got some friends waiting for me :)  I’ll finish it up soon, no worries! But I’ll give a hint: I’ve got great news from my eye specialist!

 

Are you ready? I won’t tease you anymore! I invite you to help me celebrate:

 

I’m absolutely ecstatic to announce that yesterday we found out that my eyes are 100% back to normal!!! No more hemorrhages, no more inflammation, no more anything! No more signs of any increased intracranial pressure whatsoever! My wait in the waiting room was longer than the time I spent in my appointment. It was in and out, quick and easy, painless and full of only good news! I would go to the doctor every day just to hear only news of good health. Wouldn’t you? It was a nice, refreshing change for me. And I’m relieved! After looking at my eyes yesterday my doctor said, “You really had me worried for a while there!”.

 

Saying that this is good news is an understatement. I’ve been through so much with this since February. I’m ready for this to be over. I’m ready to get back on track in treating my disease! After an ER visit, 3 eye doctors in addition to my LLMD, and MRI and a MRV, 3 spinal taps, and a visit to the Mayo Clinic I’m actually done! I can hardly believe it. All those months of pain, of confusion, of worry and test, after test are resolved. And to think it was all caused by just a month of Doxycycline in January and was exasperated by a rare side-affect of months of Levaquin. No one thought it could be the antibiotics because I had stopped the Doxy so long before my symptoms occurred and Levaquin wasn’t even considered to be the cause of the problem. No one expected that it would take me almost a full 7 months to fully recover if antibiotics were to blame. But, turns out they were and it did take me that long to come to the place where I’m at now.

 

I’m so incredibly thankful for all of those who helped me get through this! My parents and my family were amazing. They truly are the pillars of my support system, and my wonderful friends were there for me at every twist and turn down that long road. My doctors however, deserve so much credit. Without my LLMD’s attention to detail in this situation I could have undergone surgery for a shunt to release the pressure. Thank God I didn’t go down that route needlessly. And thank you to all of you who read this blog. Knowing that you were here and listening to me as I traversed this obstacle made all the difference.

 

I’m slowing dosing down on my Diamox, and in a month I’ll be completely off of it. I can’t wait! And in 2 months I’ll see my eye specialist again just to check on how my body is handing being off of the medication.

 

Peace and healing, molly

 

“If you concentrate on finding whatever is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul.” ~ Rabbi Harold Kushner

Seems like a good time for an update! It’s absolutely pouring sheets outside and as I pondered the things I could be doing right now, watching the rain pour down on the street below from my picture window and writing up an update seemed high on my list. Higher than doing something about that pile of dishes in the kitchen, or attacking my chemistry homework, or even {gasp!”} reading. And, with this weather I’m sure you’ve guessed that my energy is in short supply today. Better safe than sorry. In truth, I’m saving my energy today because in a few hours I’m meeting up with a few of my best friends to spend some quality chilling out time before school begins again. Don’t even ask when school starts for me either, because I have no clue. I like it that way! Summer might, just might, last a few days longer.

 

I last wrote before going in for my monthly LLMD visit. At that point, and still, I was having horrible abdominal pains and was getting sick after eating anything, even gluten-free foods. Things have been a mess! So, she checked my spleen, making sure it wasn’t a problem there. And she came to the conclusion that I assumed she would – digestive issues, nothing more. Good news, and bad. I mean, a girl’s gotta eat! She explained it to me saying that my gut and intestines are so inflamed and swollen right now that anything will set them off. We need to get this straightened out! And when I said that I was having highly increased urination too, she said that she would expect that from my situation. Not only am I still on a diuretic medication but my inflamed gut is pressing down on my bladder making me have to pee almost on the hour! And come on, that’s just annoying.

 

So doctor’s orders: I’m now taking L-glutamine {an amino acid} before breakfast and dinner {1 gram daily}, and digestive enzymes with each meal. L- glutamine is used by some Celiacs to promote healing of the intestines and villi. And as for the digestive enzymes we actually found a brand that carries a special formulation for those can’t handle gluten. It helps ease discomfort when small amounts of hidden gluten are digested, and it too will promote healing in my inflamed abdomen. I’ve only been on these a few days, so we’ll see how they work out. I’m hoping they really will because at this point I’m still getting sick every time I eat.

 

In other LLMD news, I’ll be starting a few new herbal tinctures that have shown great success when treating Lyme. One, Cumanda is used to treat both Lyme and co-infections. So it’ll be a good fit for me, since my Bartonella treatment didn’t sit too well with my body. It’s an anti-bacterial/fungal/viral/parasitic and anti-inflammatory on top of it! The second is Pinella, is used to eliminate toxins from the brain and central nervous system. And, *BONUS* it treats brain fog!! YES! Please! I’ll even eat the cherry and get sick if I can have some mental clarity for school in September!

 

I’m also lined up to get my co-infection panel done in the coming weeks. Separate infections other than Lyme can be spread by ticks, and when a person is infected with more than Lyme alone it makes treatment more difficult. I’m being treated for suspected Bartonella, on the basis of several of my common symptoms and the rash that is telling of this particular infection. I have the rash on both hips, my chest, and formerly on my knees. But, I’ve never had a blood test for Bartonella. My LLMD also suspects that I could have other co-infections. If I do, or if I don’t, it’s just best to check and be sure. I’ll get the blood test 2 or 3 days after I start the Cumanda. That way we can stir up my immune system response a bit before testing.

 

The results are confusing though. I don’t want to have too much on my plate and be overwhelmed with yet another infection to treat. But, I also want to find any and all possible reasons for my being so sick and treat them! So I’m in some ways hoping for positive test results. There’s also the common false-negative to worry about. So if things come up positive, we know I’ve got it. If they all come up negative, there’s still that questions of doubt. Screwed up, right? I know. We desperately need more accurate tests.

 

I think that’s all I can update for now. I’ve got some friends waiting for me :)  I’ll finish it up soon, no worries! But I’ll give a hint: I’ve got great news from my eye specialist!

 

Peace and healing, molly

“The greatest healing therapy is friendship and love.” ~ Hubert H. Humphrey

Just wanted to give all a heads up! I’ve got my monthly-ish appointment with my LLMD {very early} tomorrow morning. I feel unprepared for it, but we’ve been waiting for this for a few weeks. So many little things have piled up symptom-wise, and I of course, forgot to write them down. I’m doing my best to remember them all tonight.

 

It’s been a rough few days since late last week. I was able to have fun over the weekend though. My soon to be sister-in-law had her shower on Friday, and my aunt and grandma were able to make the trip up to come too. It was a lot of fun! We met and mingled with a lot of her family, played some games, and enjoyed ourselves. I was pretty overwhelmed by the time it was over, but it felt good to be there. Then on Saturday we found time in between the rain storms to get the St. Paul Irish Fair. It’s one of my favorite summer events, and I look forward to it so much! This year we got there in time to hear Romantica play, which I was hoping we would. That’s probably the only concert I’ll make it to all year! I only lasted a few hours, but again, it felt good to be there. We were frustrated by the lack of gluten-free foods available though. I made do with french fries. Of course they didn’t have corn beef and cabbage, that would have been perfect! And I’m still confused as to why they didn’t…

 

However, this week I’ve taken it easy. I’ve barely gone a day in the last two weeks without abdominal pain, and it’s been getting worse. Today was better, so that was a relief. I’m having chest pains almost every day as well. They come and go. And now more joints are bothering me. Today my wrist and elbow acted up. Totally new symptoms. So these are all things to report tomorrow.

 

I’ll post an update as soon as I’m able to!

Peace and healing, molly

 

“May the saddest day of your future be no worse than the happiest day of your past” ~ An Irish Blessing

I love Twitter and let me admit I’m slowly but surely being sucked into it’s depths. And as far as Lyme Disease goes, there’s a huge network out there filled to the brim with other Lyme patients, families, activists, and the list goes on. Great articles are shared, new findings, offerings of support and friendship. It’s all there, in 140 characters or less. For those of us with Lyme brain, aka brain fog, confusion, fatigue, etc., tweeting within those allowed spaces is a relief. It’s not so over-whelming as going onto an online forum, or even blogging, to update others and read the latest news.

 

I can be found under the name dizzygrl05, if anyone’s looking.

 

So, I found one more reason to love Twitter this morning. In my news feed was an announcement from Under Our Skin, the eye-opening movie exposing Lyme for what it really is. They said simply that Under Our Skin has been requested by IDSA as evidence for the Lyme review panel. In one word: YES!

 

Read their newest blog post here: Under Our Skin 

 

You’ll also find there the best summation I’ve read so far of what happened during the IDSA Lyme Disease review a few weeks back. Please, go take a look at it. It gives an understanding of the enormous need for an overhaul of the IDSA Lyme treatment guidelines.

 

Peace and healing, molly

There’s so much to say that I hardly know where to start. It’s been weeks since I felt well enough to post, and as usual I missed it. It’s so incredibly frustrating for me when I sit down to write and not an un-jumbled thought comes into my mind. So bear with me here as I attempt to shed some light on the past few weeks!

 

First, I’m so excited to tell you that my eye specialist gave us some AWESOME news in the middle of last month! I know, shame on me for forgetting to mention it. If it’s any consolation it was mentioned in my Twitter stream. Anyway, my eyes are almost 100% better!! No more Optic Nerve inflammation or ICP for me! Turns out that taking me off both the Doxy and recently the Levaquin did the trick! My dosages of Diamox which I’ve been on for months to keep a handle on the side-affects of ICP and lessen the raised levels have been cut in half. I have a follow-up appointment with the doctor in a few weeks where if things are still looking up the Diamox will be cut out of my treatment regimen. If I could jump without getting too dizzy, I’d jump for joy!

 

My appointment with my LLMD was around the same time last month. I handed her a list of my worst symptoms, and we agreed that I’d been herxing since starting back on antibiotics roughly a month before. From my own observations since then, I herxed constantly for around 6 weeks. A few of my biggest complaints were horrible brain fog, fatigue, pain, nausea and uncontrollable sudden acne breakouts.

 

For the nausea she explained that it was most likely being caused by toxins in my stomach/gut and no medications she gave me would help to a great extent. Great. So she suggested trying Reed’s Ginger Brew, a ginger ale with up to 26 grams of ginger jam-packed into a bottle. It’s helping! It seems to calm my stomach, wish it would give me my appetite back too though.

 

My brain fog she chalked up to toxins as well. In her words, “we’re killing things up there!”. Lovely, no? The phrase Toxic Overload comes to my mind. The acne is being caused by toxins too, trying to get out of my body through the skin. She recommended trying some herbal tinctures that other patients of hers were showing great results with. Our hopes are that they’ll reduce the fogginess and confusion and curb the daily headaches that have come back full-force. I haven’t ordered them yet, but we’re looking into them. I, of course, would be willing to give them a shot. Once we do get them, I’ll post their names.

 

My parents and I are also looking into investing in getting me a co-infection panel from IGeneX. My LLMD has been hinting at it for months, but the cost has always been a deterrent. If we knew that the test would for sure give us results, then of course it would be a no-brainer. But as it is the tests can’t guaranty that every infection will be discovered. Many false negatives show up. It’s up to the doctor to interpret. We suspect that I have Bartonella, but Babesia is also a possibility. Of course, it would be much better if I didn’t have any co-infections! But if I have them, it’s best to know so we can progress with treatment for them. Our plans are to get the panel later this month since I have another appointment coming up next week, I believe.

 

I’ve had some new symptoms appear lately. One of the most interesting is knee pain, for the very first time in my life! Knee pain and Lyme are “tied together” by the traditional definition of Lyme Disease. So I’m not sure what to make of it. I’m also having a lot of chest pains, and abdominal pain. My foot pain comes and goes, after not being  a problem for months after Bartonella treatment. But most annoying and troublesome of all has been my growing food sensitivities.

 

I posted a few days ago that I had been “contaminated” after eating out. That means that gluten was somehow introduced into the dish, and my sensitive digestive tract didn’t like it one bit. I had a lovely gluten-free meal at Axel’s Bonfire last week with friends. I carefully questioned the waitress, and felt fine after eating it. Only to get slightly sick the next day. I didn’t know if it was from gluten contamination, the ice cream I’d eaten as desert, or from the MiraLAX I’d been taking for a week since finding out that my fiber supplement had gluten in. I voted MiraLAX and forgot about it. Then a few days later, after stopping the MiraLAX, I went out to eat for lunch with my mom. We carefully instructed the deli on how to prepare our salads, grabbed some ice tea, and a bag of potato chips each. A few hours later, we both knew we had a problem. By the time we had gotten home the pain was horrible. I spent a few hours in the bathroom that night and I’m still recovering. I feel so much better than that night, but I still get a stomach ache from eating just about anything at this point. Gluten-free or not, food has not been my friend lately.

 

Our best idea has been to get me tested for Celiac Disease. My mom was tested and was negative. But there’s still a possibility I have it. The trouble is, I’ve been almost completely gluten-free for months and to test for celiac you must be eating wheat products for at least a month beforehand. I’m not willing to do that at this point. It’s not worth it! So we’ll see what my LLMD has to say, but we desperately need some help with all these intolerances at my house now. Gluten, dairy, soy, eggs, and nuts if you count both my mom and I. Things are getting worse, what do we do? Between the nausea and the bloated discomfort I know is coming, eating is a challenge these days!

 

I’d like to end this post with something positive however. I’ve had a taste of normality folks, and it was beautiful. I’m not sure how I managed it, but last week I spent day, after day, with friends and family doing things I wouldn’t have been able to do only a week earlier. I had an absolute blast! It must have been 4 or 5 days in a row of eating out, playing in the park, movies, sleepovers, and shopping. My heart is brimming with enthusiasm over it. It’s all a blur in my mind, but the memories are sweet.

 

Peace and healing, molly

 

“The best thing about the future is that it comes one day at a time.” – Abraham Lincoln

I can’t believe it’s been so many weeks since I last posted. Time flies as you herx, doesn’t it? I just wanted to take a moment tonight though to recognize that today I’ve officially made it through 7 long months of Lyme treatment. I have so much to say and update you all on, but I’m going to make you wait. Just a little while, I promise! I’m having a tough night after eating out twice this week and *likely* being served contaminated foods on both occasions. (Not for lack of trying!)

 

No more gluten for me, please!

 

Stay tuned for more soon!

Peace and healing, molly

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