Wednesday, March 31, 2010

A video of me getting ready for my bicillin injection

Monday, March 29, 2010

On vacation from Lyme Disease

I have been taking some time off from having Lyme Disease.  Oh, you didn't know you could do that?  Ya, I'm on vacation from Lyme Disease.  Okay, okay, it's not like I planned it.  I have just been having good days.  Yesterday was my 11th good day in a row.  JEALOUS?  Well if you have Lyme Disease, maybe you are.  :)  So today is day 12 & so far I feel just fine.  My legs are weak & achy, but hey, you get what you get and I'll take it as long as I don't have to be in bed all day. 

Anyway, I have been feeling good & living.  My parents came and put in the rest of the garden.  YAY!!  And they are coming back again next Saturday to finish off the watering system.  If and when I ever move I can just move the garden with me.  It's brilliant!!  I have done tons of laundry, gone grocery shopping with the fam & made my kitchen sparkle.

I am shooting an interview for a Lyme Disease public service announcement.  May is Lyme Awareness Month.  I am so happy to be involved you have no idea.  It makes me feel like I am actually DOING something.  They will be here to shoot some time around the 1st.  YAY!  Here is the link.  You can help too:  Lymenaide

Oh and P.S.  My blood work is being sent to Igenex today for my Western Blot panel.  PLEASE pray for a positive.  Please. . . .  I'm nervous and these next 2 weeks are going to drag.

Monday, March 22, 2010

Well, I had a good weekend

I have been feeling good for the past 5 days.  I love that.  Back in bed today.  I probably over did it.  Oh well. 

Friday night I went out on a much needed dinner date with my husband.  The kids went to their moms.  It was nice to get out.  Food was good.  Then Saturday my father & mother came over & my hubby & dad built me an organic raised garden!  I am thrilled!  It took the entire day & they are only about 60% done.  Have one more box to build & they will do it this Saturday.  They gated the area off so my 3 dogs can't pee on everything. 

Dad & hubby putting in organic soil                                   Finished product

In the first box we have 2 kinds of lettuce, yellow squash, zucchini, two kinds of tomatoes, yellow & green peppers, spinach, & swiss chard.  I have a nice raised pot with parsley, cilantro, & basil in it. 
It was nice hanging out with my parents.  It's been a long time.  And this was a realy nice gift from my parents.

Then Sunday I went to a park picnic to celebrate one of my sis-in-laws.  We were just celebrating her, because she is just that special :).  I brought her flowers, because I thought she might love them.  And I think I was right.  I figured, every gal loves flowers.  But we had to leave early because my friend from the Bay Area came down for an overnight visit before their trip to Disneyland.  It was great to see her, her husband, & their two kids.  I adore her children!  It was so nice to spend time together.  Glad they came on one of my "good" days because today I am not feeling so hot.  My muscles are SORE all over.

On the Lyme Disease front, I am getting a second opinion from an LLMD I didn't know existed in Malibu (not the LLMD that travels TO Malibu).  He takes my insurance!  WOW!!  So I will be seeing him on Wednesday @ 2:30pm to discuss the PiCC line & my protocol.  We shall see if he will become my new LLMD or not.  I feel guilty though, like I am cheating on my current LLMD.  I love her and I know she wants the best for me.  But it has been too much of a challenge to get everything with the PiCC line situated & I am not too confident in her confidence (if you know what I mean).  I just need to get better!!

I have may active viruses & my intuition tells me that these are a large problem for me.  I have MCV, EBV, HHV, Q Fever, and I may be missing one.  What does one to when they have these viruses activated in their body?

Monday, March 15, 2010

Lime Green Ribbons Across America - Pass it on

This letter is going around Facebook.  It is perfect timing, I am going to wear my lime green ribbons & now I have the idea to put them on my tree in my front yard.  I may just make some tee shirts:

Today, I am writing to you as a plea for help. We as Lyme Disease patients and Chronic Lyme Disease patients are forbidden to receive the proper treatments necessary improve our quality of life and in many cases keep us from death. Doctors across America are ignoring their Hippocratic Oath that they took upon decided to become a doctor. They are REFUSING to treat Lyme patients.

As a Chronic Lyme patient we often hear things such as: "It's all in your head". "You will just have to learn how to live that way'", "Oh, we will not treat Lyme patients here"- even thought it is within their field. "Sorry, there is nothing more we are ALLOWED to do for you...we know what you need, but we aren't ALLOWED to treat you!" Yes, this is real. You ask how do I know. Well, these are just a few of the many things that have bee said to me!

I ask you: Would this be said to a Cancer patient? How about an AIDS patient? No! Why? Because they are well known disease...Lyme is not...YET! However, the CDC states that Lyme could be 10x more prevalent in the US than AIDS. Why, because many people do not know what Lyme is and how is affects you. Ask those in the Blood Banks, they know it is in the blood bank supply. And what is being done about it? Nothing!

May is Lyme Awareness month and we are looking for you to help bring about change. We hope that you and every one you know will help us in getting the word out, and stop the suffering we have to endure as patients without rights. For the thousands who have died, those dying, those bed-ridden, those hanging on to the daily tasks that we can complete. WE are pleading for you to help us. We are asking for you to tie a lime green ribbon around your tree, and pass this note on to friends and family, ask your local churches, schools, and businesses to do the same. There isn't anyone who doesn't need to know the dangers of having a simple tick or horse fly bite, and what it can do to you. You could get Lyme and be fighting for your life or the life of a loved one. Go to to learn more.

We need to stop the madness of the IDSA. They are ignoring all of us, telling us we can not receive treatment. We are not crazy! We are not going to shut up, sit back and die because of their ignorance. Thousand of us already have died- I don't and refuse to be another one to add to that list and I don't what the hundreds I have meet to suffer any more either. We want our right to treatment the way our Lyme Literate Doctors KNOW how to treat us! We will not stop our effort until we get our rights.

For now, those of us that can afford to live pay from $4,000 - $7,000 a month for medications to help beat this disease. We will go through our life savings to walk away after our Lyme Literate doctor's treatment as a normal functioning human. We will go through up to $150,000 to do this because our insurance will not cover our treatments. They don't recognize our disease because of the faulty IDSA guidelines. We have to go to the few Lyme Literate Doctors, but we can not speak about them to our insurance companies otherwise we put them at risk of the insurance companies and medical boards attacking them. This is all due to only a handful of IDSA Board Members who will not listen toscientific evidence that proves them wrong.

Please consider tying a ribbon or ribbons around your trees as a simple way of support our cause. You CAN help us stay alive! You can prevent those of us that have Lyme from developing Lyme-induced Parkinson's, MS, Lou Gehrigs, ALS, Alzheimer's, and many other diseases that present themselves as real disease.

If doing this can prevent one person from suffering the way I have...I have done my job. However, it is my desire to help save thousands of people with this disease get the justice they deserve.  Can you please tie a lime green ribbon around your tree and spread the letter around?  With your efforts they can make a difference.

Thank you,

Allison Caruana

Creator of Rally Against Lyme Ignorance- Facebook group

Saturday, March 13, 2010

An open letter to people that love someone with Lyme

I found this on my new lyme friend Casey's blog Ranblings of A Lymie :

Dear Family of a Lyme Disease patient,

I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.

I am one of you.

For more than 6 years my daughter has suffered through this ugly, dark disease.

She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).

She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20's, one of the most productive and exciting time of her life.

We have taken her to every known medical specialist in southern California as well as three different General Practitioners.
She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).

For the first 4 years of her struggle, I was not a good parent, even though I thought I was.

My daughter didn't have any outward sign of her illness. She looked "normal". After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back "normal".

I was, and sill am, one of the world's biggest cynics and skeptics (I'm originally from Missouri - so "Show-Me").

Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.

You can't possibly be this ill and not have something tangible to show for your symptoms.

You're either just faking it or your lazy or it's psychosomatic or your trying avoid the real world.

Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.

That's the way I approached her illness. It's time you took control of your illness and will yourself well.

I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.
My daughter and I have both suffered because of my ignorance (I'm not saying all of you are ignorant, I'm saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.

Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc.

If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more "traditional" illness, like Lupus or Multiple Sclerosis or Cancer.

I've done all the study, I've been with my daughter at all of the appointments, I've watched the misery she's been through.

Hey they just can't help the way this disease treats them. It's not their fault.

We as family members need to be there to support them. They don't need our pity. They don't need our skepticism. They don't need our criticism.

They need our understanding.

If you as family members will take the time to study this disease, you'll see that it is real. The little buggers who have invaded their bodies are real and they are making our loved ones sick.

Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the Internet as well as new books being published everyday on this disease.

We can't possibly understand the way they feel, not unless we have the same bacteria in our bodies.

My daughter has a long way to go before she's back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.

She certainly doesn't need someone who claims to love her causing her any more pain than she has already.

Families. from one who has been in your shoes, please let them know you love them.

Let them know you're there to help them.
Let them know that there's no way you can possibly understand their pain, but that you will try to understand their illness.

I think one of the most important things I've come to learn is that my daughter's disease may be God's way to teach me a lesson.

I'm not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.
I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing.


Friday, March 12, 2010

I haven't been posting . . .

I haven't really been posting.  Why you ask?  Well, since my last LLMD appointment, I have been super stressed.  So much going on, trying to shop around for the best prices of every new med.  To decide along with my LLMD on the best protocol for me.  To get the PiCC or just go with finding a nurse to put in an IV catheter every Monday & take it out myself on Friday.  The PiCC scares the crap out of me.  I don't know why.  Not just the procedure to get it, but of the possible problems that can go along with it.  The risks.

I have two weeks of Bicillin shots left.  4 to be exact & by then I will need to either have my PiCC line already in place or have a nurse lined up & all my drugs in my house.  Drugs cost money.  But the way I have it worked out (I hope), I should be able to get by with $1000 a month for the drugs & $300 for my supplements.  We shall see.  I have called around to different pharmacies.  I am definitely going with for my IV Rocephin needs.  I am going to do the gravity drip and it should be costing me about $25 per day for generic plus shipping from Florida (about $100 a month).

Dealing with all of this has caused me stress.  My husband has been SO good about keeping all the financial stress off of me.  He has been bearing all of the burden since mid-October when my LLMD said, "NO STRESS".  And working his butt off & raising two teenagers that are both in sports, lessons, tutoring, & have social lives.  He's amazing.  When I feel good enough, I will run out to pick up one of the kids or drop them off if it's not too far a drive.  I make sure to do that whenever I can.  Today I spent about 4 hours designing a new flyer for our real estate business.  It felt good to help.   We used to go hang the flyers together, but I can no longer help him with that.  So we've hired a friend to do it for us.  $150 per 1000 flyers.  So about $300 per month.  You have to spend money to make money.

So now it comes down to getting the final details together.  Struggling to get my insurance company & my doctors office to get things straight.  Even though I am not CDC positive, I am trying to get my insurance to pay for the PiCC line & 30 days of antibiotics.  It would help tremendously.  If they don't okay the PiCC line, I will have to come up with about $2000.  I know someone that paid for their own & that's what they paid, so I figured it will be about the same.  We will just come up with the money.  It will happen.  It always does.

So anyway, I haven't really thought of a way to articulate what I have been going through, and that's the reason for not posting.  So many things to figure out . . .  makes me worry.  Makes me cry sometimes.

Saturday, March 6, 2010

Rough ride

I've been having a hard time the past few days.  I have 3 weeks to come up with the money for a PiCC line, or to get my insurance to agree, and the money for all the medications.  I am losing it.  So is my husband.  This is just too much.  I just wish I had someone to make the best decisions & advocate for me.  I'm not even that sick right now.  But I just can't take it.  I need a vacation.  I want to get away.  The beach would be nice.  I feel like screaming.  Can I cuss?  Do you care if I cuss?  If you called me right now, I would be cussing.  Sorry.

Thursday, March 4, 2010

New protocol

So in less than 4 weeks I am to stop my Bicillin LA injections.  It has done great things for me, however I have hit a plateau and it is time to move on to the BIG GUNS.  IV Rocephin.  Along with 3 other oral antibiotics.  Oral antibiotics are a nightmare because they make you feel like crap.  OH JOY.  And how we're going to come up with the money for all of this??  We have no idea.   Moving on to bigger & stronger antibiotics has always been the plan.  And i knew it was coming but . . . .  I will find a way to make this work.  I have to.

I called my insurance company yesterday & told them that I have Lyme Disease, but I am not CDC positive and that I have been paying for all of my treatment out of pocket.  And that I need a PiCC line & IV Rocephin.  The customer service person said that I need my doctor to call and say that it is medically necessary and that it should be approved.  I called & talked to my LLMD's assistant today.  I hope she relays the message and they get on it soon.  I hope this works.  Otherwise I either need to raise the money to have the PiCC line put in myself (yet no one knows how much that will cost) and I need to order my drugs outside of the US (Canada).  I read online that the US Government won't "persue" me if I only purchase 90 days worth at a time from Canada.  Same maker, it's just that the Pharma companies & US Government greedy people (politicians) don't get their share of the money.  I have no problem with that!

If I don't get the PiCC line, I have a few RN's that have agreed to volunteer their time to give me IV's in my home.   But at 3-4 days a week for 6 months, that can really mess up your veins.  Lucky for me, my friends came together & contacted their contacts & found some people that are willing to help me free of charge.  People that don't really even know me.  :)  Makes me SMILE from ear to ear.  But all of this is scary.  And I have been crying a lot because I am afraid of what will happen to me if everything doesn't work out.  And the added stress I have put on my husband.  We have no idea how we will pay for any of this.  I just feel so guilty.

Monday, March 1, 2010

Please help! A Public Service Announcement for LD awareness month.

Please click the link below to see how you can help.  They definately need donations, videos, pictures, and Lyme Disease stories.  May is Lyme Awareness month & this project needs to be out on the TV screens by then!!

Click here not to read more!

I have my LLMD appointment tomorrow.  I hope I remember to ask my doc everything that's been on my mind.