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Change of plan

I decided to stop taking my antibiotics. I’ve also stopped taking the Lovenox. Clearly, neither helped me keep a pregnancy, so what’s the point?

Since Saturday (the day of the stopped antibiotics) I’ve eaten all manner of sugar, bread, dairy and caffeine. It’s somewhat out of control, actually. But it’s been several months, so I’ll give myself a break on this one. It will even out after I see my herb guy tomorrow and admit to my failings…he’ll guilt me back into shape.

I saw a general internist-type doctor for the first time. My husband is convinced I need a captain of the ship, as it were…someone to oversee all the specialists. This Dr. spent a lot of time with me, reviewing my medical history, examining my reflexes, heart, etc. He ordered some blood tests and referred me to an allergist because, get this, he thinks my allergies to our cat (who I adopted just before marriage) is the source of my immune system problems and miscarriages. Interesting theory, but after a search on the interweb (which, as we all know, is the definitive medical source), I found no such link. Appointment isn’t until first week of January, so will have to wait to find out.

In the meantime, I’m in the middle of the two week wait, sans Lovenox :O

Here’s a question for anyone who feels qualified to answer it: How can you trust your doctors when they all give you different opinions?

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I need a vacation from my vacation

My husband and I have never really had a vacation. We didn’t have a honeymoon after we got married. So this last weekend we scheduled a 4 day getaway to the beach. Nothing but relaxation and rest for 4 straight days.

Thursday was a great day, they upgraded us to a suite! It was literally bigger than our house. Unfortunately, it smelled like old lady perfume and moth balls. Thursday night my allergies started really bothering me so we asked for foam pillows and took the feather comforter off the bed.

By Friday my allergies were so bad we asked for a different room. They gave us a new suite that was just as big but no old people perfume. Unfortunately, by this time I realized my allergies weren’t allergies at all, but a cold…a bad cold.

Friday night we bought me some Nyquil, but because there was a small possibility I might be pregnant, we decided to get a pregnancy test and take it before I took the Nyquil. We were trying to forget about the wait, weren’t going to test at all, just let things unfold. But because I was sick and had to take the medicine, there really wasn’t a choice.

o I took the test. And it was positive! We couldn’t believe it. We were so excited. Finally, not thinking so much about it actually worked! I wasn’t going to do it, but I looked on my iphone app to see what the due date would be, what sign the baby would be. A Leo born August 6th.

We ordered up some room service and watched a movie. Every so often my husband would point to me and smile. High fives. I didn’t care so much that I was so sick.

Then I went to the bathroom and there was blood. My husband tried to convince me it was normal, that it was just spotting. But it wasn’t.

And then I got cramps.

I never would have known I was pregnant again if I hadn’t gotten sick. Such a cruel, cruel trick. We’re trying to figure out what to do now. I was taking the Lovenox, so it wasn’t a clot. Was it the Lyme? A co-infection? Should I start the other antibiotic? But that means taking 3 months off. Three months is a long time. And if the reason is just that I’m old, then continuing to try every month is the best thing to do, not take time off.

It’s getting harder and harder. And when I think it can’t get any harder than it is, it gets harder still.

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At least I don’t have swine flu

Well, I woke up this morning 10 percentage points lighter on the “ability to conceive” scale. But I had some very nice birthday wishes from family and friends, so there’s the bright side.

Had my 2 month appointment with Lyme doctor Sunday. I saw Dr. Thoring this time instead of Dr. Harris. Dr. Thoring is putting me on some better Magnesium supplements (why I wasn’t given these before, I don’t know…two months of crappy supplements = wasted time). He said if my restless leg problems don’t resolve after a week on these, I probably have a co-infection. If I have a co-infection, I have to take three months off of baby-making to take another antibiotic that is not baby friendly. When you’re 41, the dog-years theory applies so three months is really actually like 5 years. I’m really hoping the new supplements make me better. I ordered them on Monday and they said it would be one or two days max but they’re still not here.

I also complained about my hair falling out (which it is doing again) and Dr. Thoring suggested I try Armour Thyroid instead of Synthroid. Any google search will reveal a massive controversy about this subject. I called Dr. Stricker’s office and first they said it’s not available so stick to Synthroid. Then I told them Dr. Thoring has some, so can I just get a prescription. They were very defensive, espousing danger and full of warnings. Look, if it might make my hair stop falling out, it’s worth a try. I’ve begun imagining myself like Little Edie in Gray Gardens, dancing around with a towel on my head.

The new supplements plug up the afternoon no pill-popping hole so I’ll have to update my regimen. I also have to set the alarm an hour before I get up just to take my thyroid medicine (whatever that ends up being) so that I can wait an hour to take the probiotic/saccharomycin/herbs and then wait another hour to take my antibiotics/olive leaf/fish oil with my breakfast. I’ve reached the point where there aren’t enough hours in my waking day to take all of the shit that I have to take.

I started the Lovenox shots this week and something happened two days ago that has never happened before: I pulled the needle out and I was bleeding where the needle came from. Then immediately there was this hard lump under my skin the size of a quarter. A call to the pharmacist and some online sleuthing put me at ease as evidently this is a known side-effect. Why it had never happened before, and why it was happening now, I haven’t a clue. But it’s normalish, I’m fine, and I hope it doesn’t happen again. Plus there’s the lovely accompanying big purple bruise.

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Pass the tequila

My hip feels great. It’s not even three weeks since the surgery and I’m about 95% back to normal, except it’s better than normal because I don’t have the crazy hip pain anymore. I actually went grocery shopping today pain free. It’s absolutely amazing.

Went to my herb guy, Majid, on Wednesday. He said I’m 50% better overall than when I first went to see him a month and a half ago. He also said that my ph balance is good and the hormones look good and if we want to start trying to get pregnant again we can. I’m trying to decide what level of commitment I’m up for…do I start the lovenox? Do I go back to acupuncture? I have to say it was pretty great this month just knowing I was not pregnant. No tests, no wondering, no counting days, no contemplating due dates. I was simply not crazy this month. It was a nice respite.

I think this month we should not try to get pregnant, but at the same time not try not to. This is what my sister-in-law did and guess what, she’s pregnant. My friend with the new baby suggests drinking more. She, as well as many people she’s talked to, were evidently really drunk when they conceived. It sounds counter-intuitive (and somewhat harmful) but maybe it’s worth a try. I’ve tried everything else.

I have my next lyme dr. appointment next Sunday on November 8th. I recently read the most up-to-date information regarding lyme and pregnancy and the concensus is that I have to be on antibiotics the entire pregnancy or risk passing lyme to the baby which can cause several problems which include everything from heart, brain and lung damage to death. So I guess I’ll be on antibiotics either until I have a baby or reach meopause. Great.

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More drugs

Had the second IUI on Sunday morning. This one did not hurt as much for some reason, much to my delight. But the doctor said I need to take the progesterone…so I get to add that into the daily drug mix. Now we wait….

Also drove out to Malibu Sunday afternoon for my follow up lyme appointment with Dr. Harris. It’s been two months since I saw anyone and I’ve been having some crazy stomach problems, just an ever-expanding belly. Nothing fits me.

Dr. Harris said I’m not meeting expectations, meaning I’m not getting better which I should be after three months. He also had some thoughts about why my legs were bothering me so much, said it might be a coinfection (even though I tested negative for all of those earlier). He said negatives are not as reliable as positives and my symptoms point to a coinfection. That could also explain why my legs are getting worse, not better, with treatment. He said that because I might be pregnant and the coinfection antibiotic is a Class C drug (not safe for pregnancy), we will have to wait until I am not pregnant to start treatment. In the meantime, I have to up my dose of Magnesium…more pills, yay.

He also told me to add a few things to my daily drug regimen to help with the stomach: Saccharomyces, acidophilus and something else I can’t remember the name of that I have to order. I’m also taking Diflucan for 3 days starting yesterday. I go to the herb guy, Majid, tomorrow. He has worked with lyme patients before and I think he’ll be able to help me with what food I should and should not be eating. For the time being, I’ve been ordered off of potatoes, rice, pasta, sugar, bread, all the things I love the most. I’m eating a lot of salad (no croutons). No more Starbucks cafe mocha, no more sandwiches, no more of my favorite Thai food, no more french fries.

Did the crew thing for the Avon Walk on Saturday and I’m paying for it today…my legs and hip are REALLY sore. Every time I have to get out of my chair I groan like an old man.

Did I mention that Receptionist is having a girl? The whole mail area is decorated with “It’s a Girl!” signs and pictures of ultrasounds. They’re starting to paint the nursery tomorrow. And when I hear all of this I’m so jealous and it makes me feel really bad 🙁

But what makes me feel worse is that not only are my lyme symptoms still bad, but the medicine to make me feel better is causing a whole host of additional problems on top of everything else. In essence, I feel worse after being treated for three months and now I can’t eat anything I like.

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Starting IUI

So today was the first appointment with USC Fertility to get the whole IUI process going. Exam, blood test, ultrasound, the whole nine yards. Everyone is very impressed with how I keep my medical records…everything is in a binder all tabbed and indexed. I guess that’s unusual.

We talked about clomid and injectables. Clomid is a pill that makes more than the usual one egg “drop” which increases the chances of pregnancy from about 6% to about 25%. Injectables are for people who just haven’t gotten pregnant and it REALLY increases your chances of pregnancy, and of multiple pregnancies. I had 17 folicles in my right ovary and 8 in my left. If I did the injectables I could end up Octomom, which is not ideal. So we decided to go with the Clomid…I take 2 tabs each night for 5 days. Then on cycle day 10 I start testing in the afternoon with the ovulation predictor kits. Once it’s positive we go in the next day for the “transfer.”

They tested my FSH which was 7.5. They get worried that the eggs are all dried up if the number is over 10, so this is good news for me. That plus the “above average” number of folicles gives me some better than average odds for my advanced maternal age.

Other than that, my legs have really been bothering me. They feel like they’re hooked up to an electrical outlet, especially if I walk any distance longer than 10 feet. Something to talk to the lyme doc about at my next appt. That and the fact that my belly is all big again from the antibiotics. Gotta lay off the sugar.

GOOD NEWS: My new insurance, Cigna Open Access, not only pre-approved another 6 months supply of Lovenox, they have already shipped me a 3 months supply and it only cost $40. Suck it Blue Shield.

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Daily Regimen

meds-710551

Mostly because of the lyme, but also because of the MTHFR, Hashimotos and ACA, I have a lot of shit I have to take every day. Some I can’t take with others. Some I sholuld take with others. Some I have to take on an empty stomach. Some I have to take with food. It’s daunting to keep track of everything but I finally scheduled it all in.

  • 7am (empty stomach) – probiotics (3), calcium/D/mag (2)
  • 8am (with food, at least 1 hour after previous batch) – amoxicillan (2), zithromax (2), olive leaf extract (2), fish oil/DHA (2)
  • 11am (2-3 hrs. after food, 1 hour before food) – synthroid (1)
  • 1pm (with food) – amoxicillan (2)
  • 6pm (with food) – amoxicillan (2), olive leaf extract (2)
  • 10pm (empty stomach) – probiotics (3), baby aspirin (1), claritin (1), prenatal (1), calium/D/mag (2), folgard (1), lovenox (shot)

When I was a kid my mom made me take vitamins every morning. There were about 10 of them and I HATED taking them but I got good at taking everything at once. I swore I’d never swallow that many pills again. Joke was on me. At least I can take each batch all at once.

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Shooting Up

Had my second lyme appointment on Saturday (or first follow-up). It was with a different doctor. I discussed with him my concerns about baby-making at this stage of the lyme game. He suggested I wait six months to see how I do on the antibiotics. I suggested I not. He called in the expert who said it was ok for me to try to conceive now. I like the expert.

The expert changed my medication–took away the Ceftin and added amoxicillin in its place (more baby-friendly). I was told that I could breastfeed if I was not having symptoms.

News Flash: Husband does NOT have lyme! So that’s great news.

I started the Lovenox on Friday night. It was really hard to stick myself with that needle. It’s like the thing that prevents you from breathing under water was preventing me from jabbing a sharp needle into my belly. I eventually did it though. It went in slow and burned a little. Then after I took the needle out it hurt worse for about 15 minutes, like someone was pinching me really hard or something. Last night was a little easier. We’ll see how it goes.

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Love my new OB

Met with Dr. Park on Tuesday (Husband couldn’t come, he’s been wrestling with a really bad case of the flu and a room full of pregnant people is probably not a good place for him to be). She was as fantastic as I had hoped. Very encouraging, very interested, very willing to help us. She thinks the positive result on the anticardiolipin is significant, especially when you add in the MTHFR. Even though the other two tests were negative, she wants to err on the side of caution and agrees with the anticoagulation protocol (baby aspirin, lovenox). Can’t take dexamethasone with Lyme, so don’t know if something else will take it’s place yet…have to ask Dr. Stricker. She thinks the IVIg, LIT and Humira are not a good idea, much like the other doctors we saw. She agreed that I can start the Lovenox on cycle day 6 and so if the coinfection blood test results come back negative, we can start up again in a couple weeks.

Dr. Park suggested I get a mammogram before I get pregnant just in case so I have an appointment on Monday. She also wants me to see the perinatologist Dr. Mullin because the lyme and blood clotting issues (plus my age) make me a high risk patient. I tried to make a “preconception” appointment but it’s $450 and insurance doesn’t cover “preconception” appointments. I told them I’d call back when I’m pregnant.

Dr. Park did say that it’s entirely possible that I’d have to be off work after 20 weeks. She said that with her patients who are always used to go-go-going, it’s difficult for them to slow down. I told her that wasn’t a problem with me 😉 But the problem is that I haven’t had a full time job since getting laid off in March. I had two prospects that kept stringing me along (the first for 2 months, the second for a month). We don’t have enough money saved for me to stay not working after the baby is born. And it doesn’t help that we’ve spent over $9,000 with all of these medical tests…kind of ate through the savings we did have. So I’m freaking a little about all of that. I guess I don’t really have to worry about it until it happens though, just try my best to get back working and know that we will work it out when it happens. I was worried about this same thing a year ago and it turns out I didn’t need to be because we lost the baby. So you never know how these things are going to go. I worry too much in general.

Started taking the second antibiotic, Ceftin, which tastes like…um…something really really horrible. So now I’m on 500mg of Zithromax and 1000mg of Ceftin daily. Seems like a lot of antibiotics. I haven’t really noticed a lot of change, maybe a little change. My mood is definitely improved and that makes everything else less awful.

Dr. Stricker prescribed the brand name Synthroid (I’d been taking the generic) hoping it will stop my hair from falling out. We’ll see.

The bird’s nest outside my window was full of action last week. Mama was feeding the baby at a feverish pace. Whenever Mama would come close, baby bird would tweet as loud as it could. At first I could barely hear it, but then it got very loud as the baby got bigger. Now the nest is empty, no more action. But I hear baby bird tweeting around the house outside and that makes me happy.

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Antibiotics…Check!

We flew up to San Jose this weekend to meet with Dr. Harris’s physician’s assistant, Yvonne, at Pacific Frontier Medical Group in Redwood City. Our appointment lasted over 90 minutes. Yvonne explained my test results to us, stating that I definitely have active Lyme disease. We went over all of my symptoms, she drew some more blood to test for “co-infections” which you can also have when you have Lyme, and she prescribed a course of antibiotics and probiotics.

Yvonne said that if I do not have any co-infections, we can try to conceive right away…the antibiotics she has prescribed are Class B and it’s ok to take when you are pregnant. In fact, even if I were to wait until symptoms resolve and I feel “cured” she would still likely prescribe a course of antibiotics during the entire pregnancy to prevent transmission of disease to the baby. So unless I have a co-infection (which we’ll find out about in the next 2 weeks) we’re back in action!

I have a follow-up appointment in 4 weeks in their Malibu office (which they occupy only one weekend per month) with another doctor. In the meantime, I will start the antibiotics and also will have the appointment with Dr. P (the prospective new OB). I really really really hope the treatment works because I can’t imagine caring for a baby/toddler while I feel this way (which, if I haven’t already said, is like a 75 year old).

In an extremely interesting turn of events, my husband may also have Lyme and/or a co-infection. He has all of the symptoms. They drew his blood also and we’ll have the results back in 2 weeks. It’s possible that together we are the perfect Lyme storm, passing disease back and forth (which is not proven, but believed possible). “What’s the secret to your marriage?” “We used to make each other sick, but we saw a doctor and got rid of it.”

By the way, there is a bird’s nest right outside my window. I watched daddy Mockingbird build the nest, mama Mockingbird finish it up, and now I can hear baby Mockingbird calling for food when mama arrives with a treat. It’s very sweet and makes me feel optimistic.