So last week, the lyme doctor said she wanted to redo my blood tests to see how aggressively she could treat me. I went back on Friday to have my blood drawn. The nurse, in all her infinite wisdom, stuck me on the inside of my wrist to draw blood. It hurt!! I know I don’t have great veins but I’ve never been stuck there….ever. At that point, I was starting to miss my PICC!

I went back today expecting to get my results. When I got there, the nurse said that she couldn’t find them. Come to find out, she didn’t draw the blood in the right tubes so the lab canceled the order when they received it. Nice.

So I had to have blood drawn again – this time she went in my hand. It hurt as well but not near as bad as the underside of my wrist (which is still bruised!).

The doctor stuck her head in briefly and asked how I was doing. I told her I wasn’t feeling that great and my knee is really bothering me. Most people have joint problems as a major symptom of Lyme but my knees haven’t bothered me in a long time. She didn’t seem to care and just kind of nodded. The nurse said she wasn’t charging me for a visit so I guess that’s why the doctor didn’t say much to me.

Now, I have another week of waiting to get results. The good news is that the increase in the doxy hasn’t caused any major nausea yet or a big herx reaction. I did take two long naps last weekend but I think that was from being exposed to gluten when I went to eat lunch on Saturday.

I went to the mall after lunch and literally within a matter of minutes, I went from feeling okay to feeling like I had the flu. I had ordered a bowl of gluten free soup but when it arrived, it had several tortilla strips on top (which are not gluten free because of cross contamination). I didn’t think much of it and just fished them out. Well, I will never do that again!

I barely made it home and then fell asleep for several hours. And I’m not a napping person. Unless I’m incredibly sick, I don’t sleep during the day or in the car or anything like that. I doubled up on my probiotics and drank a ton of water for several days to try to flush it out. I have no idea if that really works but I feel better than I did on Saturday.

So from now on, I will be very careful about what I eat and any potential cross contamination issues. Eating out was already difficult but now it will be near impossible. Oh well, we’ll save money, right?

Hopefully my blood tests won’t be canceled again and next week I’ll actually have results to report!

For nearly two weeks, I have felt great. In fact, the past four or five days, I have felt normal. As in before Lyme normal. It has been absolutely amazing. I haven’t really even said anything to anyone because I didn’t want to jinx myself with it. But it has been really great to get a glimpse back at what normal is.

Many times when I would go to the doctor for check-ups, she would ask me how I felt as a percentage in relation to how I was before I got sick. And I would always come up with some random number. But I felt like I didn’t really know what normal was anymore so it was hard for me to judge.

Now I remember. And when you feel good again, even if it’s for a short bit, you realize just how bad you actually felt before. And it was bad.

Yesterday, I didn’t feel quite as great. Not bad, but not as good as I had been feeling. Today, it hit me full force again. The brain fog came rolling back in and the headaches started again. It has been quite some time since I’ve had a headache. Before my treatment started, I was having headaches daily every afternoon without fail. So that is certainly an unwelcome return.

I’m hoping it’s just a fluke with today because this isn’t even going along with the cycle of my period (I’m on day 17 of my cycle). So I don’t really know what is going on but I’m hoping for the best. I don’t go back to see my Lyme doc until the first week of May.

Fingers crossed….

Even after finding out last week that someone stole my social security number to file their taxes, I’m still feeling pretty good! I mean, what can you do? I followed all of the steps for identity theft and now I just wait. Getting upset won’t accomplish anything and is just more likely to make my Lyme flare-up so I’m trying to stay calm about it. I’m almost scared to throw this out into the universe but how much more can be piled on me?!

I’ve been without my PICC for right at a week now and it feels SO GOOD! After a lot of finagling and phone calls last Tuesday, I finally was able to get the nurse out here to pull it for me on Tuesday night. I was really nervous about having it taken out but it was no big deal. So we took a nice little picture of me holding the line (with my arms outstretched – it was long!!) and said goodbye to that thing for good!

I had to leave it bandaged up for two more days after it came out since I was going to be flying. They were a little concerned about the air pressure on the plane and then of course all of the germs. So I kept it covered while I was gone.

It was funny though what I did. While the PICC was in, I didn’t get it wet a single time. A lot of people take chances with it by covering it with saran wrap and taking a shower. I was too scared to do that so I always took a bath with my arm propped up on the side of the tub. My left arm was washed with baby wipes for 12 weeks!

When I was in the hotel when I was out of town, I climbed into the bathtub and the first thing I did was stick my left arm under the water. It still had the bandage on it and I kind of freaked when I did it. Luckily I had another bandage so I just switched it out. The only thing I can think is that the tub was reversed from the one in our bathroom so instead of my left arm being up against the wall, it was towards the bathroom. I couldn’t believe I did it though!

It was SO nice to be able to take a shower and wash my own hair! I have tried not to claw at my skin too badly. It is still very irritated from the adhesive and I bet it’s going to be red for a while.

But overall, I actually feel good. It scares me a little bit to say that because I’m kind of waiting for the bottom to drop out. For about two days after I started the Doxy and the PICC was stopped, I felt about 50% of “Lyme normal”, not “normal, normal” if that makes sense to anyone but me?! But then it was like everything just started looking up.

And my boss agreed to buy me an air purifier for my desk so it is on order now too. I’m hoping that will help, even if it’s just a placebo effect with it!

I’m hoping I have turned the corner and this is the beginning of very good things!

So back to the Lyme doctor today. She said I was only her second patient to lose their gallbladder during treatment. Not exactly the kind of record I want to set! She also said I’m her ONLY patient to not have neurological symptoms clear on 12 weeks of Rocephin. Lovely.

Why do I always have to be the person who is outside the norm?

I did tell her that my head was very clear in the hospital after surgery so she said maybe it was due to the stress dose of the cortisol for my adrenals. She thinks it’s possible that my adrenals are playing a bigger role in making me feel badly. Maybe she’s right but sometimes I think she’s just trying to find an excuse! But I get all of the results from that soon (they’re suppose to be in the mail) so we’ll see what they say.

Regardless, my PICC line comes out next Tuesday. I will do my last treatment on Monday and then the home health nurse can come by to pull it out on Tuesday. I will be so happy to have this thing out of my arm. For one, I want to be able to take a shower again and wash my own hair! And two, I want to just sit there and scratch my arms for hours! haha

After the PICC comes out, I go back on Doxycycline and I can expect to be on it for three to six months before she tapers me off. We are going to start at 200mg and see what happens. She told me to expect to feel badly for the first week or so after the PICC comes out because of coming off of that medication and starting another so I’m bracing for that.

She also wants me to continue with B12 shots weekly and add Ginseng and Gingko Biloba as well as doubling my CoQ10. So another trip to the vitamin shoppe. They should put up a statue in my honor in that place!!

I don’t go back to see her for a month so it will be nice to have a little break from the doctor’s visits!

Well, luckily for me she at least told me today that I don’t have to come back for two weeks! These weekly follow-ups are a little tough to schedule and I would LOVE to have just one week where I can say I don’t have ANY doctor appointments!

Anyway, she received all of my testing from the cardiologist and she does not agree with him that it isn’t Lyme related. Lovely. I told her I followed up with the thyroid doctor and he doesn’t think it’s my thyroid either. So I guess we have 2 out of 3 votes for Lyme. And being that I didn’t like the cardiologist or anyone in his office, I’m more inclined to side with them. Regardless, unless there’s a block, they can’t do anything about it. We just have to treat the Lyme.

The good news is that all of my other blood tests are showing perfectly, even with the increase in Rocephin. Everything with my liver, kidneys and CBC is spot on. So at least that’s one thing that’s perfect! Crazy though that these tests can look so good when I feel so bad!

I told her the chest pain was continuing and is mainly at night. She doesn’t seem too concerned with it since my heart tests were normal. I asked about my gallbladder but she said that if it was my gallbladder, the pain would be on the right. I’ve seen some people who said their pain was on the left with it too. But she’s the doctor so I guess I’ll trust what she’s saying.

As for treatment, I think I mentioned before that it looks like I’ll be going the full 12 weeks. May as well at this point, just about another month to go! She said after my IV treatment ends, I’ll be going back on oral meds. She mentioned I may go back on the Doxy or she sometimes uses Zithromax. So I guess we’ll see about that when the time comes.

TWO whole weeks without a doctor’s appointment now! I hardly know what to do with myself! 🙂

Well, as I predicted, it was a huge pain to get her office to call in the doubling of my medication. I called the pharmacy last week to let them know to expect the order. And in the past, they’ve just sent me my meds anyway (apparently her office is notorious for this lack of follow-up). But because this was increasing the dosage, they couldn’t do it without an order.

When I went to the cardiologist office last Friday afternoon, I stopped in to ask them to please fax the order so I could start doubling my medication. It just so happened that the doctor was standing there in the hall. She looked up at me and smiled and then asked what was wrong?

I told her I was on my way to the cardiologist but her office hasn’t faxed in my orders so now it would probably be Monday before I even get my medication. She was mad! And told them to fax it right now.

The NP also happened to be standing there and she didn’t even acknowledge my existence. So I’m not sure if she’s mad I switched to the doctor or if the doctor said something to her about the heart issue that has been missed. Whatever, I really don’t care.

The pharmacist himself called me on the way home from the cardiologist appointment and was talking about how frustrating it was that I needed the medication but they couldn’t get her office to respond. I told him I had just personally gone to the office to check on it and he said he would start calling again first thing Monday morning.

Well around mid-morning on Monday, the pharmacy called to let me know they had the order. So I was able to do Monday’s dosage and Tuesday’s dosage (1 gram each) together last night. It took about an hour to do 2 grams. Once I get this new shipment today, it will at least be easier because I won’t have to do the sterilizing, etc between switching out the medication.

After doing the doubled dosage last night, I definitely felt it in my head. MAJOR brain fog. I’m sure this will last for a few days as my body adjusts to the new dosage. Hopefully it will only be a few days – I’m still trying to save my sick and vacation days.

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!