Medications & Australian Customs

Today I am looking into how to get my medications and all my supplements to Australia for the duration of my time there which is 1 year. I don't want to go buy all my supplements only to be told by customs that I can't take them in. That will be a whole lot of money down the drain. So I am spending the morning online researching Australian customs and what things they do and don't allow. I will only be allowed to bring in 3 months of antibiotics so I will need a doctor there to rewrite my doctor's prescriptions from the states. I will also need to bring a letter and put the medication in my carry on baggage. What I am most worried about is my Neuroscience 5htp and Tyrosine sprays because they are liquids are they are really picky about liquids. SO... I am going to bring a 3 month supply of those and then ship the rest at a later date. I will purchase them on Amazon using my prime membership which ships anywhere in the US for free. I will ship them to my mother-in-law and then have her ship them to me in Australia. The total package has to be a value less than $400 US. If it is over that I will have to pay duty and customs charges which I don't want to do.

For my medications it is also required that I have a doctor's written note describing my condition and the medications so after I start the Tinidazole, I will have another doctors appointment where I will ask her to sign a letter that I can bring with me so they won't seize my medications and supplements. I spent time looking at examples of letters this morning and drafting up one with my condition and medications and supplements necessary that she can go ahead and sign and send back unless she wants to draft something different. This should save the time and expense of having her draft one up herself and also making sure she doesn't miss anything on it that I am taking. So that is the scoop for today.

Oh. On the Tinidazole. I am waiting to take that today because my house is an absolute mess from the weekend. My husband and I packed up our library and while we did so the kids ransacked the house, having fun and leaving messes every where they went. I still haven't caught up on the house and I am scared if I take the Tinidazole that it will make me feel so sick that I won't get to the house and then it will be messy all week. So house first, then Tinidazole.

Tingling

I have had tingling the past 3 days. Ok. I have felt in in my head and I am feeling it in my feet right now. I think it is a B-Vitamin issue. B Vitamins reversed tingling for me but it is either the antibiotics or the fluconozole or the yeast issues that is causing it. I tend to think it is the yeast issues that I am having because they prevent the body from creating the B vitamins in the gut. I think. But just wanted to report it. It has been about 2 years since I have had it. Hope it doesn't get worse. I am going to up my B's.

Ilads Conference - Free Streaming Video Tomorrow & Next Day!

Here is the link:

http://www.ilads.org/lyme_programs/lyme_events_video.html?utm_medium=email&utm_campaign=2011+Live+Streaming+Video+Conference&utm_content=2011+Live+Streaming+Video+Conference+CID_66362afe1b9095a8be1cd56c41b1a7e5&utm_source=Ilads+user+email+marketing+campaign#page=page-1

I am looking forward to it! I will be moving some stuff into a storage unit tomorrow but I am going to try to schedule my move around the conference. Enjoy!

I wish you knew

For those people in my life who can't quite seem to figure out what happened and what went wrong and if I am really sick or not this is for you. The following list, although not exhaustive, is a list of symptoms of Lyme Disease compiled from Lyme Specialists. The ones with the asterisk (*) are the symptoms I have had in the past which for the most part, through specific supplementation I have eliminated. This should help those who don't understand, better understand what I am gone through and the fight for my health that I have been in.

*Persistent swollen glands *Sore throat Fevers *Sore soles or “burning” feet Joint pain or swelling *Back pain *Joint stiffness *Muscle pain or weakness *Muscle twitching *Mental confusion *Difficulty with concentration or memory *Difficulty with speaking or reading *Mood swings *irritability, depression, or panic attacks Tremors or seizures *Headache *Light or sound sensitivity *Blurred vision Ear hum or loss of hearing

Vertigo or poor balance Lightheadedness *Dire need to sit or lie down *Tingling, numbness, or burning *Facial paralysis-Bell's Palsy *Dental pain *Neck pain *Extreme fatigue *Trouble sleeping *Excessive need to sleep *Unexplained change in weight *Bladder dysfunction Stomach problems Heart palpitations *Sore chest wall *Breathlessness Night sweats *Symptom flares every four weeks

Anxiety Flares

So the past few days, at 10 am I would have flares of anxiety and I know this is a little gross, but usually when my body was gearing up for a trip to the bathroom. I hate anxiety so much but as I have been taking the antibiotics, I have had noticeable anxiety every 4th week of treatment which I am taking as a good sign that the Lyme is being killed. However, this week I am not on my 4th week so I was getting a little worried. Not too much though. The past few days I have had a terrible sore throat that has kept me propped up on pillows throughout the night, waking me up with painful coughs and has prevented me from getting good sleep the past three nights. I believe sleep is necessary for your body to replenish it's neurotransmitters so I think I must have been more depleted than normal because 1) I was sick and fighting something off and 2) I wasn't getting sleep. The good news today is that I only felt it for maybe a couple of minutes. But it is so distinct when you feel it. I used to believe that anxiety was a completely emotional state but having been through what I have been through I realize that anxiety can be a completely physiological state. This Lyme Disease has rocked what I have always thought and I hate to learn it this way but I am so glad to know that all the millions of people who suffer from anxiety or depression and the like arn't necessarily emotionally unstable people but their bodies could be suffering from unbalanced bio-chemistries caused by nutritional deficiencies, bugs, heavy metals, allergies, etc. It is so amazing when you are having a great day, all is well and then this random pang of anxiety hits your stomach. It is pretty strange that it often hits me when I have to go #2. I seriously wonder why that is. If you know me, I don't give up and I will figure out a reason for it someday! Doing well though. In a few days, after I am over this cold, sore throat, aches and flulike sickness and not having any anxiety (!!!) I am going to add in the Tinidizole. Although, on second thought, I may wait until my upcoming 3rd fourth week of treatment passes so I don't cause a massive herxeimer reaction. Hmm. I will let you know what I end up doing.

A Quote

"Friendship is born at the moment when one person says to another: What! You too? I thought I was the only one". C .S. Lewis

I saw this on a friend's Facebook page and immediately thought to post it here. It is so true. These are the friends we long for. The friends that can understand us, or a piece of us and have been there too. They understand a piece of our heart that is hard to explain to those who have never experienced it.

Encouragement for a Weary Soul

"Like cold water to a thirsty soul is good news from a distant land". Proverbs 25:25

My husband went to New York this weekend to go pick up our stuff in storage and drive it back down so we can consolidate all our belongings before our move to Australia at the end of December this year. He made a stop and spent the night with some good and old friends of ours who have gone through some really, really hard times due to some poor choices they made. They are amazing people. Talented, hard working, brilliant but just didn't make some good choices. They have been having a really hard time financially, emotionally, in their marriage and in life for the past 4 years. Apparently for this past year, they have been doing really well. There was a turnaround of some sort and they are both prospering, have great jobs and have an infectious enthusiasm for life. I spent time talking on the phone to one of them while my husband, there in person, was chatting with the other. I felt so encouraged getting off the phone. It is not often you hear of people turning around like that after being in a hole for a while. It is SO good to hear. It gives me hope and encouragement and faith in this journey for health that I am on and in seeking my turnaround. It feels like they are better than before and I hope that I will be better than before. Is that possible after having Lyme for 4 and 1/2 years? I don't know but that is what my hope and my heart are set on. I also feel impatient now. I want to hurry up and be better already. After I see this miracle take place in my friends life, I am ready for mine. But my path is a different path and my journey is a different journey. When I started getting really sick (in the head I might add with all-encompassing anxiety) I would pray and cry out to God to heal me. I thought I was doomed for life. I didn't know what had happened to my brain but things weren't right anymore. Well, one morning, before I was barely awake and still laying in my bed, I felt God gave me a song. It wasn't a religious song. My mom and I will sometimes get spontaneous songs that we haven't heard in years while praying for certain situations. Well guess what my song was? It was George Harrison's "I Got My Mind Set On You". This song helps stay my heart and mind when I feel impatient with the process and I remember God is letting me know it is going to take TIME, a whole lot of precious time, it is going to PATIENCE and a whole lot of spending MONEY! When God gave me that song, he gave me my path and because of it, I just keep walking that path, until the day I feel ALL better! Here are the lyrics:

I got my mind set on you
I got my mind set on you

I got my mind set on you
I got my mind set on you.

But it's gonna take money
a whole lotta spending money

It's gonna take plenty of money to do it right
child.
It's gonna take time
a whole lotta precious time

It's gonna take patience and time to do it
to do it

To do it
to do it
to do it
to do it right
child.

I got my mind set on you
I got my mind set on you

I got my mind set on you
I got my mind set on you.

And this time I know it's real
the feeling that I feel

I know if I put my mind to it
I know that I really can do it.

You know, the last lines just really hit me.  I never really noticed them before.  I know if I put my mind to it, I know that I really can do it.  

Those are AMAZING WORDS! If it is God, which I believe it was, then this is telling me that if  I put my mind to it, then I CAN do it.  So I am believing in being all better - no matter how much patience, time and money it costs.  If you haven't noticed, I am encouraging myself in this post.  But this is what we need to keep moving on, keep taking the medicine, the vitamins, keep strong in the midst of not seeing results as fast or as soon as we want to.  

Keep the faith.

Here is a link to the song "I've Got My Mind Set on You"

http://www.youtube.com/watch?v=f61q-Y5EOxE

Still here!

Just wanted to say I am "still here" and still plugging away at my protocol. We went away to SeaWorld for the weekend with some cousins and had a great time. We took my four kids (between the ages of 4-9) and met up with their 4 kids (between the ages 2 and 10) and we walked around SeaWorld from 10-4pm and then from 7-11pm. I carried my 60lb daughter for a long time as she was tired. I couldn't believe I could do it! I cheated and had 2 diet pepsi's for energy that day but I still I didn't expect myself to be such a trooper. Going into the day, I didn't know how I would do. Normally on any event, good or bad, that requires energy and excitement of any sort on my part, I will generally feel "wired" for about 2 days after the event and not be able to take a nap or wind myself down. I was never this way before I got sick but after I got sick I found myself being "overexcitable" with negative or positive emotions depending on the event and unable to wind down. So the good news with this trip is that I took a recovery nap right away, and then another the same day and then another the next and today I didn't need a nap. It was a normal recovery from an intense weekend. No overexcitablity. No intensely wired feelings. I was just able to rest. Right away. And that is a step in the right direction. Or a step backword to the normal me before all the lyme attacked my body. Whichever way I look at it, I am pleased with this progress towards the me I know and have always known.

A Quote

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.

Plugging Away

Well, I am plugging away at the antibiotics and things are going well other than the yeast/candida. It is mostly under control and almost unnoticeable now. Right now I am taking Doxycycline 200mg 2x day and Rifampin 600mg 1x day. My LLND had me taking Rifampin 2x a day but after reading Singleton's The Lyme Disease Solution where he recommends taking 600mg 1x day I have been doing that. I have not yet started the third antibiotic that is part of my beginning Lyme protocol. I have had yeast issues so I am taking Fluconozole for that at 150mg 1x day. I have to take Fluconozole for 2 weeks straight and then I will add in the third antibiotic (Tinidazole) as well as diminish Fluconozole dosage to 3x a week. I take it first thing in the morning. Then I wait 2 hours and have breakfast and take my Doxycyline. Then I wait another 2 hours and take other supplements. Then another 2 hours I have lunch and my second round of Doxycyline. Then I wait another 2 hours and take Chlorella to help detoxify my gut. Then around 5:30, 1 hour before my dinner, I take Rifampin on an empty stomach. I read that Rifampin and Fluconozole can cause drug interactions so I take them far apart. It is challenging because everything has to be seperated. No anti-fungals and antibiotics at the same time. My LLND had me taking Nystatin as well at 3 a day but it caused pretty intolerable bladder pain for me. I read that it can do that so when I have my next appointment with her I will let her know that I don't think I can take it. The Fluconozole is pretty tolerable for me though. I don't have the intensity of pain in my bladder area that I did when I took both Fluconozole and Nystatin together. My bladder pain began the very day I started taking the antifungals. I usually get it for a few days every month before my period but it has greatly diminished the past 6 months. This month it came back with a vengeance but again I think it was the Nystatin. Will wait another month and test that theory. So for right now no Nystatin for me. The bummer of it is is that Nystatin is supposed to not be absorbed by your gut so is a good medication to take long term but it doesn't seem to be working for my body. We shall see. It feels crazy putting all these medications in me. I don't like it at all. My initial excitement has worn off. The honeymoon period of taking antibiotics is over. Now I am a little disillusioned (already!) with all these antibiotics. But I am determined and I am committed to getting better. So this is the path I choose as it is the best I know.

A Quote

"Hope is like the sun, as we journey towards it, casts the shadow of our burden behind it".

This is so true. Hope is what fills my heart every day. As I take my antibiotics and vitamins and minerals and supplements. I journey towards it every day!

Insurance Paid!

Well, I have Aetna and they can be tough. Just type them into the internet and see how many bajillion clinical policy bulletins come up of what they will NOT cover. Anyways, a couple of months ago, I was tested for Lyme using the Western Blot IgG and IgM by Igenex and when it came back positive my LLND tested me for all the co-infections. The initial Western Blot tests were $200 and the subsequent co-infection tests totalled to be about $1000. My insurance pays 80% out of network fees and guess what...they reimbursed me $835 with $50 still pending! How cool is that? I have heard patients having a hard time getting testing payed for with Lyme so I was expecting them, because they are so stringent in their policies, to come back and say we aren't paying for any of it, especially because it was an out of network Lyme lab. So I was just really happy yesterday when I picked up my mail, opened the letter from my insurance company and low and behold $835 in my name! It is always nice to hear a little good news!

Lonely but Blessed

Often my house is a mess. I don't commit to being on committee's or involved with my kids school. I complain of sickness alot. I have one friend but I am sure she thinks I am a hypochondriac. Even my husbands family may. But I know myself before and I know myself after. Fortunately, I have gone the completely alternative route but still using MD's and I have saved myself the stress, for the most part, of dealing with doctors who are unsupportive. I have also sequestered myself somewhat to caring for my children, my husband, my home and my health and only involving myself in the kids activities. It is enough for me to do that with a traveling husband and four kids under the age of 9. I do this to protect my energy levels and also from exposing myself to relationships where I can't give at the same level and therefore subject myself to being unfairly judged. I don't know anybody here who barely even knows what Lyme disease is. When I have talked about it, they asked if it is contagious. "No" I say. I think I just need to keep my mouth shut about it for now and keep the mystery alive as to why I never really involve myself in to much. I fully intend to engage in relationships and activities when I am feeling better but right now all my extra energy goes into my kids. And we move alot so friendships take a lot of time and work and I just haven't had it. The last placed I lived, I was blessed with a next door neighbor who had Lyme and she knew all about what I was going through. I didn't even know I had Lyme at the time but she was right there encouraging me when I felt sick all the time. We helped each other with one another's children and were just there for each other to talk. I am a Christian and she is a Christian too. We would just walk outside and talk to each other. How blessed is that? But here, I don't have that so I feel lonely. But it is okay. I am getting better. The good side is that I am home all the time with my kids. I don't have the energy to pursue other ambitions and as a result I have shared so many fun and good times with my kids that I probably wouldn't have had I been out conquering the world. I get to take my daughter to the bookstore (she's 4) and shopping and to the zoo and all those fun laid back things that stay at homes moms can do. When I think about how much time I have spent with my children it makes me feel rich and blessed and happy and fulfilled. I am looking forward to more energy in the future but I am so enjoying the treasure of time I have with my children that is in the now.

2nd Fourth Week of Treatment

I haven't been writing alot because I have been recording most of my thoughts in my daily journal. I got particularly stressed this past week about a friend situation in which a friend asked me to do a favor and I said, "Yes, what is it" and it ended up she was asking me to be on a fundraising committee which she knows I don't particularly care for in the first place. Because I had already said yes to the favor without knowing what it was I felt obligated. My husband came home and really discouraged me from doing it, because I am being treated for lyme and it is bringing on symptoms and also because we will be moving internationally in a few months and I have to begin preparing for that. I ended up e-mailing my friend and letting her know that I wasn't going to be able to do the committee after all. So I have had anxiety over that for the past week just about. It doesn't help that I am moving into the my 2nd fourth week of treatment (week 8 total) and that I am feeling anxiety and depression from that. It seems I had heightened feelings of worry, anxiety, fear, panic the last fourth week so I am just trying to ride this out. I think it is playing with my emotions and making me excessively worried about situations that would cause much less worry if I wasn't being treated right now. But I think anxiety during the 4th week is my "herxheimer" reaction because it seems to be quite specific. Time will tell! I haven't had this type of anxiety for a long time for those of you who might have read how I had successfully treated it in the past. It is like a feeling of whirring in your stomach, almost adrenaline like, but layered with fear. I have only had that feeling when I seem to get sick every year in May - which now I am coming to think it is the Lyme acting up then (that is the month when I first got sick 3 and 1/2 years ago). Right now, I am giving myself more of the sprays that I take to help off-set the heightened anxiety that I feel with the antibiotics. I have to say though, I don't feel the anxiety often, just mostly the fourth week which I am taking right now as a good sign that the antibiotics are killing off some bugs. I have found myself wanting to be creative with dinners again and cook meals for my family. Not that I didn't make dinner, but I would always just make very simple dinners, no recipes. Basically, buy hamburgers and throw them on the grill type of dinner. Since antibiotics, I have tried new pot roast recipes, made pumpkin muffins a couple of times and I think a few other new things. So it is not all bad, just occasionally which is to be expected.

Yeast and LLND Appointment Update

So my LLND (Lyme Literate Naturopathic Doctor) is prescribing me 2 weeks of daily fluconozole followed by taking 3 fluconozole pills for every week thereafter that I am taking antibiotics. She said if yeast is a problem this early in my antibiotic treatment it is going to be there all along. I am also to delay adding in my third antibiotic, tinidazole, until I am done with the 2 weeks of fluconozole so I need to go pick that up from the pharmacy. The appointment was rather short, just reporting to her symptoms and then arranging the treatment above. However, I did tell her at the beginning that I felt embarrassed that I had e-mailed her twice with worries about my daughter having lyme (she turned out to be negative) and also having the diabetic like symptoms that have for the most part passed. I think that I just am feeling more worried and panicky than normal because I am treating the lyme now and she said that the lyme can do that. Boy, do I know. It isn't bad bad though like I have had it in the past. It is just up but I guess that is a good thing. I just have to be aware and be careful not to over-react and understand this is how it is making me feel.

Bad Girl!

A few days after I got sick on Monday of this week, I started feeling ravenously hungry. Hungrier than I have ever felt in my life. I ate a TON of food that day. A TON! When I woke up the next morning I thought through how I had been frequently urinating, way more than normal, I felt thirsty all the time and I had been ravenous for a couple of days all the while I was losing pound after pound. I typed in my symptoms and up came diabetes and I just cried. I feel like I really want to treat the Lyme Disease with antibiotics but how am I going to continue if it is bringing on diabetic symptoms. I e-mailed my LLND and she let me know that she didn't think it was diabetes that was causing the intense hunger, frequent urination and thirst. Phew. I think she's right but after having had so many things go wrong with my body I tend to fear the worst-case scenario. I was sick with some sort of bug this past week as well which can cause the symptoms I was having - known as transient hyperglycemia so I should not worry. Could just be from by body fighting the Lyme.

So, my appetite has still been much higher than normal although not as intense as it was a few days ago. My weight seems to be dropping a bit. So much so that I snuck two pieces of pizza this morning (BAD!!! I know) but I felt so hungry and they were there and I just ate them! Now I will have to delay taking my doxy this morning because I ate CHEESE pizza!!! I was all set to go down and make eggs for breakfast and low and behold - two boxes of cold Pizza Hut pizza were staring me in the face from our Friday night pizza movie night and I was overtaken (also I knew in the back of my mind I could take another fluconozole pill to fight off the yeast...bad!!!) My yeast infection is coming back - there have been little itty bits of sugar (in the taco sauce) and refined carbs (tortillas) that I have snuck this week. I know I am terrible. It is really hard to eat no sugar, no refined carbs and no milk! I just found that they had milk proteins in the taco sauce I was sparingly using! Ugh! I was trying to find something without milk that I can eat when I take my doxycycline. Unfortunately I have misplaced my Lyme Diet book and may need to end up buying another one because it has meal ideas in it. I don't want to replace it because it is now $29 on Amazon so I am waiting to see if it turns up somehow, somewhere but it has already been 2 weeks so it may be time to purchase another copy. I need to go and get more hummus because I left mine out overnight. That was the one thing that was a good standby. I would just take some celery and carrots and dip them in the hummus and be good to go. It was filling and tasty so that is on my shopping list now.