Differences of Opinion?

Posted on January 30, 2013 by justme

My Home Health Nurse

Yesterday, when the nurse came to do my blood draw, she was able to get the blood to flow back out, but it was really slow. She said I need to mention it to them when I go back to the doctor.

She was also telling me about all of the Lyme patients that they have in their care and again reminded me that there are only two doctors in the entire state that they know of that will treat it. That just absolutely blows my mind. I know there are more than that because I’ve personally dealt with three now but two of the three are completely under the radar.

She also told me about one of their patients who is going to be doing hyperbaric oxygen treatments (HBOT). Lyme hates oxygen so the theory is if you overload them with an oxygen rich environment, they will die. I decided I’ll ask about this when I go back. It would be incredibly inconvenient because you have to go for two hours a day, five days a week for up to 12-14 weeks, but if it works, it will be worth it. The other thing will be whether insurance will cover it.

My Doctor Visit with NP

When I went today, I said something to them about my PICC line moving slow and they said it probably has developed a small clot at the end. The word clot kind of freaked me out but they said it wasn’t the break off and kill you kind of clot – my words, not how they said it. She said they would send me back to the infusion center after the appointment.

I told her about the new neurological symptoms that are cropping up now that I haven’t had before. She told me to think of it as the Rocephin is getting into places where the Doxy was not so it’s a good thing. I’m trying to convince myself of that but it’s hard when you don’t feel good. She is now estimating that I will have to do six weeks instead of four weeks. At this point, I want the whole 12. The bad part was getting it put in place so I may as well get all I can out of it now.

I also asked about the HBOT. She kind of rolled her eyes and said she didn’t believe in it. I was shocked she said that because I knew it was one of their patients who was doing it. So I just told her what the home health nurse said. And she said they do have someone who is doing it but she doesn’t believe in it. It was then that I got the first hint that she was possibly treating patients differently than the MD was. So I wonder what else they disagree on? Definitely interesting.

I asked about seeing the doctor and she told me they have opened a new office near where my office is. I am currently working from home when I have to go to the doctor (once a week) because it’s 45 minutes from home (and my work is 35 minutes in the opposite direction from my house). Only the doctor is at that location, who I actually haven’t seen yet since I’ve only been seeing the NP, so I think I am going to go to see the MD next week. And then I’m going to ask every single question I’ve asked the NP about treatment to see if the answers are different. Maybe this strict treatment timeline is just the NP’s belief?

Getting the PICC Moving Again

As for the PICC, I went back to the infusion center and she played around with it, pushing heparin and moving my arm at different angles, until she got a good flow again. Then they sent me on my way.

So far, everything is going well with the PICC minus that one little hiccup. It’s not as bad as I thought it would be to do the treatments. I just need a blanket when I do them because I absolutely freeze! Our biggest thing is remembering to take the meds out of the fridge so they can be at room temperature before I infuse them.

The Tally…

Oh and it’s the end of the month so it’s time for another tally. Last month, the total was $7,113.80. This month, it’s $23,021.33!!! My IV meds and supplies are being billed at $4,000/week! I was told this will fluctuate each week but holy cow! And of course the bill for my PICC placement was in there as well as all of my thyroid/adrenal labs.

My insurance has covered all but $1,329. These totals don’t reflect prescriptions I get from the regular pharmacy or the supplements. I’d estimate that’s another $4,000 right now, of which I’ve been responsible for about $600.

First Blood Draw with PICC Line

Posted on January 22, 2013 by justme

The nurse came today to change my dressing and draw blood. I think they are going to start coming to see me at work instead from now on. It will be easier for them and for me.

Because I’m on IV meds, I have to have kidney and liver function checked on a weekly basis. This will show them how my body is tolerating the medications. I was rather amazed at how easy it was to draw blood from my PICC. She hooks up the syringe and instead of pushing like I do with the saline, she just pulls back and out comes the blood.

So, finally, there’s a positive to the PICC, I don’t have to get stuck!!

She sends off the blood and the doctor’s office will have my results when I go in two days. As long as everything shows okay, then we just keep doing what we’re doing.

The nurse was funny when she took my blood pressure. She looked at the machine kind of weird and then asked me if I felt okay. I replied honestly and said no, I feel like crap. She said my blood pressure was really low (98/68). I laughed and said that was my normal.

Then she changed out the dressing and oh my gosh, it felt so good when she was having to do the cleaning because it was kind of like my arm was getting scratched! The itching hasn’t been too bad so far but I’m also taking antihistamines daily to try to keep it at bay too.

I’ll go back to see the doctor in two days but assuming all is okay with my blood tests, I doubt there will be much to tell.

My First Infusion

Posted on January 17, 2013 by justme

The nurse came by last night to help me do my first treatment at home. She attached an extension line to the part that is hanging out at the top in the picture (see it here) so I can easily reach it with my right hand.

The infusion is pretty easy to do. My meds were delivered by the pharmacy via an overnight delivery (they’re refrigerated) along with all of the supplies. Other than lots of sterilizing and cleaning, I basically have to remember SASH – saline, antibiotic, saline, heparin. That’s the order that I do everything. From start to finish, it took about 40 minutes. The actual drip takes about 30 minutes so I’m sure it will get a little faster as I figure out what I’m doing.

She was surprised at the way they sent me the medication. She said most people can’t get their insurance company to approve it. It basically is like a little ball and it’s pressurized so I don’t have to have an IV pole or anything like that. I just hook it up and it runs through on its own.

She gave me a phone number to call tonight to talk to a nurse so she can walk me through it over the phone to make sure I remember all of the steps.

Within about 45 minutes after I finished the treatment last night, my head got very woozy and I felt like I had a sudden onset of the flu. I know what that is – another herx! I didn’t expect it to start so quickly so it caught me off guard. I have felt pretty bad today and while I have vacation time and could technically take off, I don’t want to use it this early in the year, especially without know what may lie ahead.

As far as how the PICC line feels, it is very weird. I feel like someone is squeezing my arm and I can feel where the line is from my arm into my chest. I can basically trace it out for you. If I try to lay on my side, I get that little heart flutter so I’m assuming it’s making the line move when I switch positions. Very uncomfortable – doesn’t take me but a second to switch positions to make that stop!

Everyone says I will get used to the line and not really notice that it’s there any more. I’m more worried about the adhesive allergy. The nurse is going to check on some other coverings we can try to use as well.

And last, washing my hair is going to be a challenge! I can’t get my arm wet so taking a shower is out and it will be difficult for me to flip my head over the tub and manage to keep my arm dry. I called my hair stylist and she said it would be $25 to wash and dry it. A few people at work called their stylist for me as well and the cheapest we found was $20. Being that I would have to go a MINIMUM of twice a week (should really be 3-4 times), there’s no way we can do that. So my husband is going to be a sweetheart and wash it for me.

It’s about time to do infusion #2….

Proud Owner of a New PICC Line

Posted on January 16, 2013 by justme

We got to the hospital this morning at 9am and checked in. Not too long after, they took me back to get me prepped for the procedure. The nurse came in to talk to me and said they do multiple PICC lines a day and it’s not that big of a deal.

Easy for him to say!

As different people came into the room, they asked me why I was getting a PICC. When I said Lyme, they all asked me if this was my first one. So I got the idea that some people have to have this done several times….which made me wonder about the whole strict timeline I was told for treatment. They asked me about who my doctor was and when I told them, every single person said I was in good hands. If anyone could help to get me over this, it was her. So that made me feel much better about things.

I was doing okay relaxing as the team who inserts the PICC was running a little behind. But when the doors opened and they rolled in their cart, my stomach instantly started doing flip flops. I made sure to remind them that I’m allergic to adhesive and there was also suspicion I was allergic to ChloraPrep as well (what they use to clean/sterilize the skin). They questioned me on that because they didn’t know anyone with that particular allergy. But she agreed to use alcohol and betadine just in case. She said she was going to do a test patch later with the ChloraPrep.

So the team got all dressed out basically in OR gear and made my husband do the same with a mask. They draped me with a sterile sheet, covered my hair and then got started. They used an ultrasound machine to find the basilic vein in my left arm a few inches above my elbow and told me to take a deep breath. They used a numbing agent so after the initial stick, I just felt a lot of pressure and weird sensations. I had my head turned away from her and at one point, she asked me to turn towards her. I was like nooooo…..this is the only way I’m staying calm is by watching this machine on the other side of me! LOL But I turned my head and just closed my eyes.

It was all done in a few minutes. And not near as bad as I had imagined that it was going to be. They sent in radiology to check the placement with a chest x-ray. After waiting a bit for it to be read, they came in and said the placement was not right and it needed to be in further. So they came back in and threaded it further into the vein. It was just more pressure.

Then she placed the dressing and that was that. She also did do the ChloraPrep patch test on my lower arm and within a few minutes, I was ready to scratch my skin off! So I quickly washed it off and we confirmed that allergy!

They gave me the instructions for care which besides keeping it sterile includes keeping it dry (no showers!) and not lifting anything with that arm. She said some people use Saran wrap to cover their arm so they can take a shower but if it gets wet, the dressing has to be changed immediately as infection can set in quickly and the line goes straight to your heart. So any infection can be very serious.

She told me to watch for any heart flutters as that would mean the line has shifted and is “tickling” my heart. If that happens, I have to go back to the hospital for an x-ray to check the placement. See why I didn’t want this thing?!

This is how the PICC line looks:

Aren’t you jealous?

The nurse should be here soon to help me do my first infusion at home. Let the fun begin!

Time for the PICC Line

Posted on January 15, 2013 by justme

UGH, this is not how I wanted the day to go. When I went in and told her my symptoms seem to be worsening, I’m having a really hard time with the nausea and I’ve noticed a roughly four week cycle with flares, she said it was time to pull out the big guns.

Yep, the news I’ve been dreading – it’s time to have the PICC line put in.

I completely lost it when she said that and just absolutely cried my eyes out in the exam room. I am terrified of having the PICC line placed, I’m scared of the higher risk of infection (it basically goes to your heart!), I’m worried about having it in around a toddler who won’t understand, I’m worried about if I’m going to be able to continue to work with it, I’m worried about how my skin is going to react to the adhesive….

I guess I’m pretty much worried about everything!

She has an infusion center in her office so she sent me back there to get my first dosage today. I walk back there and they have big comfy recliners with IV poles everywhere. There’s a TV and several people were in there having treatments all at the same time. Meanwhile, I was a blubbering mess and couldn’t even talk I was crying so hard. I’m sure the nurse who started my IV thought I had lost my ever loving mind that I was bawling like a baby over a needle stick. But I wasn’t even worried about that IV, it’s what comes next.

I have horrible veins – they’re small and deep – so she had to put the IV in the crook of my arm. I had to sit there for 30 minutes with my arm completely straight at a weird angle while the medicine dripped in. They have to do one infusion in the office to watch for an allergic reaction.

After it finally finished and I calmed down a little bit, they gave me my instructions for tomorrow. I have to be at the hospital at 9am. I’ll have the PICC in place for a minimum of 4 weeks and up to a maximum of 12 weeks. They’re estimating I’ll need it for 4-6 weeks. During that time, I’ll do daily infusions at home and a nurse will come to our house once a week to change the dressing. My infusions will be 1 gram of Rocephin which should take about 30 minutes a day to do. It’s possible they will have to increase me to 2 grams at some point. All of my supplements will stay the same.

The ONLY good news with this that I see right now is that the nausea should be taken care of and no longer be an issue for me.

I came home, cried some more and called my boss to get the day off tomorrow for the procedure. Everything I’ve read online says it’s not bad, it’s just sore and feels weird for a week or so after it’s placed.

I’m sure I won’t sleep tonight. Wish me luck.

LOVE My New Doctor

Posted on January 14, 2013 by justme

Oh my gosh, this appointment was so completely worth the wait. I FINALLY was able to see the doctor who I made an appointment with last September about my thyroid and adrenals.

He was so nice and he spent over an hour talking to me. He explained everything and I asked him a million questions about thyroid, adrenals, gluten, and, of course, Lyme. Best of all, he didn’t freak out when I mentioned I have Lyme disease. In fact, he’s treating several patients with it! I was so excited when I heard that, I could have jumped up and hugged the man. This gives me another alternative if my ID doctor drops me after 12 weeks! And he said that he treats for a minimum of six months, longer if needed.

As we were going over everything, he said he agreed with my Cortef dosage for the adrenals and he would have dosed the same way based on my tests from last October. He didn’t, however, agree with my thyroid dosage. He said I could get the same effect if I waved the bottle under my nose every morning! LOL

So he gave me a new prescription for it and I will add one pill every two weeks until I get to four pills a day (1 grain in the morning and 1 grain mid-day). He also reviewed all of my supplements with me and made a few tweaks with them.

Then came time for more blood tests. He’s checking thyroid again as well as a ton of other things. I asked him if he would check my vitamin D levels again since I’ve been supplementing that for a while now and he said he would check anything I wanted to have checked. Have I mentioned how much I love him?! When it was all said and done, he took 8 vials of blood so that should be some pretty extensive reports!

He also agrees with my other doctor that the adrenals will likely turn around once the Lyme is under control. It’s possible the thyroid will as well but not as likely. The same goes for the gluten – it’s going to be a wait and see kind of thing. He’s going to test me for gluten intolerance so we’ll see how that ends up coming back.

I go back in eight weeks to have my levels checked again to see how my body is reacting to the changes in my meds. He’ll send my blood tests by mail with notes on them of any additional changes that need to be made.

All in all, it was a good day on that front. Now, back to the ID doctor tomorrow for a Lyme follow-up. I’m not expecting great news there.

I Made It To Vegas

Posted on January 9, 2013 by justme

When the possibility of having a PICC line was first brought up, I didn’t want it (I still don’t). But the one thing I said was I just need to be able to hold out until after my conference in Vegas.

Well, I made it. But the nausea is just completely beyond ridiculous. I called the doctor’s office twice asking for more Zofran and nothing has been called in. I have been babying these last few pills I have.

The food choices in our hotel were so limited, we didn’t have a car and the hotel was off the strip. So I finally just gave in and started adding a few veggie carbs (potatoes, beans, etc). It seemed to help my stomach some so I at least could keep my antibiotics down. I don’t know why they’re not calling in my prescription for the Zofran. I’m freaking out a bit about adding the carbs since it’s not part of the Lyme diet but I figured it’s more important to be able to keep my medication down.

It’s been 8 weeks since I started the antibiotics so technically only four weeks to go before they end my treatment. I keep asking her what happens if I’m not better and she keeps saying that some damage is permanent and you just have to learn to live with it. That terrifies me. I ask every time I go in hoping for a different answer but it’s always the same.

Everything online says that you should continue treatment for 2 months past the last symptoms. I haven’t had two days without symptoms so I don’t know what I’m going to do if she just pulls the plug on treatment. I sincerely hope that isn’t why I haven’t received a call back from her.

I am so stressed out over the possibility of them ending treatment before I’m better and having to switch to a doctor who is self pay. I have no idea how we will be able to afford that. But if I don’t get better, I won’t be able to work at all and then we won’t be able to afford anything! And of course, stress isn’t good for Lyme so then I’m stressing out because I’m stressing out!

One thing I have noticed is that my symptoms seem to be coming in flare-ups every 3-4 weeks and it coincides with my period. I’ve never had any PMS type symptoms so I know it’s not that. And my symptoms aren’t gone the rest of the month but I can basically count on being knocked on my butt during that time period.

I’m really nervous about going back next week. I feel like I’m starting to go backwards. The floaters are getting worse and the brain fog is really bad. I’m mixing up words and forgetting things so much that I just try not to get involved in a lot of conversations at work. I write down every single thing someone says to me at work so I won’t forget.

I just don’t know if I can tolerate another four weeks of these oral meds with my stomach the way it is. I’m down a total of 50 pounds now – granted, part of that was intentional, but lately it has not been.

I guess we’ll see what she says when I go on the 15th. Also, on the 14th, I go to the thyroid doctor (finally!) who is covered by insurance and highly recommended by people on a thyroid forum that I found. So hopefully he is going to help me as well and not freak out that I have Lyme.

Oh, I don’t think I shared that story yet. I went back to my primary doctor for a totally unrelated issue and in the middle of the appointment, I mentioned that the integrative doctor she sent me to had found what was wrong – I have Lyme. She looked up at me, closed her laptop and walked out the door without saying a word. I sat there for a minute waiting and then figured out she wasn’t coming back. So I went to the front to get my prescription and left.

Bizarre! And the perfect example about how controversial Lyme treatment is! I will be requesting another NP or the MD when I go back to that office!