Tag: Lyme Disease

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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.

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Lyme Tyme

I found another doctor, Dr. Harris, who specializes in Lyme. He has office hours in Malibu once a month. I called to make an appointment and the first available in Malibu was not until July, but the first available at his office in Redwood City (near San Francisco) is Monday! We’re meeting with his Physician’s Assistant, but they work closely together. Plus I don’t want to wait any more.

We’re flying up Saturday night, staying at SIL’s house with her husband and 18 month old charmer in Monterey. I’m so relieved to be getting this taken care of sooner rather than later. I had a dream that I found out I was pregnant at 9 months. I was so horrified because I hadn’t started the treatment for Lyme. It was “I Can’t believe I Didn’t Know I Was Pregnant” meets “Mystery Diagnosis.” I really have to start watching less TV.

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More Waiting

So I thought I would just go pick up the antibiotics, start taking them, and within two weeks we would be able to ttc again.

I was wrong.

I have to see a lyme specialist. There aren’t many in California. There aren’t any in Los Angeles. Strangely, Dr. Stricker is the expert in California but he is in San Francisco. Wanting to get the antibiotics going as quickly as possible, I called to make an appointment…maybe we could go up this Friday, get things moving quickly enough to ttc next cycle.

First available appointment is August 19th. Plus there are more blood tests, more waiting for blood test results, and then more waiting while I take the antibiotics. Forget next cycle, forget the next 3 cycles. Doesn’t he realize that every month that passes my chances of having a “live birth” drastically decrease? I tried to explain that to the person who I was making the appointment with. She said she would let me know if there is a cancellation.

Such a huge setback. I’m so discouraged.

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Lyme Disease

So it turns out I have lyme disease….

I don’t remember getting bit by a tick, but evidently that’s not uncommon. I also didn’t know there were ticks in California, but evidently there are ticks with lyme in Griffith Park.

At least this will explain why my body feels like a 75 year old’s, all the aching joints, stiff muscles and restless legs. I’ll find out about the treatment tomorrow. I was told that lyme disease could have affected my ability to stay pregnant. I also learned today that if I hadn’t been diagnosed and treated either before or during pregnancy, it’s likely that the baby would have been born with lyme and it could have wreaked havoc. Just read this

Freaky.

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I don’t have TB

Time to celebrate I guess. I do not have TB. So I guess the Humira is a go.

AND, Dr. D’s nurse agreed to draw my blood for the Lyme test tomorrow morning. More drawing, more FedExing.

I started the Synthroid this morning. I don’t feel thinner but I do feel like I may have had a bit more energy today. It’s probably in my head, but who cares.

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Purpose

I’m hoping that writing this blog will help me to be less crazy. I’ll let you know how it goes.

I’m 40, married. I am a new patient of the Alan E. Beer Center in Los Gatos–more specifically, a patient of Dr. Raphael Stricker–for the purposes of having a baby…hence the name of this blog. I plan to document my trip on the AEB train here, partially to help others who are considering jumping on, and partially to get all of this out of my head (see comment re: “less crazy,” above).

How I Got Here

At 39 I started not trying to not get pregnant. After 4 months, a positive test. We told 20 people. After the first ultrasound at 6 weeks, my OB Dr. D. said the baby was not growing as much as it was supposed to. He said to come in next week for another ultrasound. At that ultrasound, we saw a heartbeat! But still not growing at the rate it should be…and not really looking right either. He said come back in 4 days for a definitive go or no go. After an extremely long weekend, everything was smaller than it was before…the worst sign. I had a D&C that Friday at 8 weeks. Dr. D. said to keep trying, odds are in my favor that the next time would be just fine. Strangely, it seemed like everyone I talked to said they had a miscarriage before having their lovely boy or girl. I was sure next time would be fine.

Five months later another positive test! Although I was certain this one would work because we had gotten our miscarriage out of the way, we only told 5 people. But before I could have my first ultrasound, I miscarried at 5 1/2 weeks. Doctors charmingly call this a “chemical pregnancy” because it happened so early and was never confirmed by a blood test or ultrasound. Regardless, I had been pregnant, had felt all of the pregnancy symptoms, had already started picking names like an idiot, and now was not pregnant…again. Dr. D. said to keep trying, odds are in my favor that the next time would be just fine…buuuut that’s what he said the last time. I asked for some blood tests…I didn’t know which ones, but I was sure there were some that I should be having. So Dr. D. ordered some and told me the results were all good. Keep trying.

Two months later I felt pregnant again! I just knew I was, even though it was too early to test. But then, a few days went by and the symptoms went away and I got my period. Even without the test, I knew. But maybe I was insane…starting to make things up like an insane person. This is how the mind plays…what fun the mind has.

Two months later another positive test! We told 2 people. But before I could have my first ultrasound, I miscarried at 5 weeks. Another “chemical pregnancy.” Dr. D. said to keep trying, but in the meantime maybe I should see a fertility specialist. He referred me to Dr. C. He added an optimistic “at least you can GET pregnant!” I hated that….the goal is not to get pregnant, the goal is to have a baby. It’s an insensitive remark. Try not to use it yourself.

By the time I got in to see Dr. C., I was pregnant again. I took a blood test that day and the HCG was only 9. So I was pregnant, but then not so much. I started my period the next day, which was at almost 5 weeks.

Dr. C. ordered an HSG (where they shoot dye into your girl parts and take xrays) to make sure my uterus was normal which, by the way, sucked. Very painful for me. And the f-tard radiologist that performed the test was an inconsiderate a**hole. Dr. C. also ordered a chromosome analysis of both me and my husband to make sure that we could actually have a kid together. $2,000 later, both tests were normal. Dr. C. diagnosed us as being in the “unexplained infertility” category and said we should just keep trying, eventually the odds were that we would have a “viable pregnancy followed by a live birth.” Live birth. That sounds weird.

This diagnosis and advice just didn’t seem right to me. Not to mention the thought of going through the “pregnant…..not pregnant!” rollercoaster again made me want to hurt someone. It was wreaking havoc on my body and on my psyche. I get all excited for a week or weeks and then am totally depressed. It’s an impossible situation.

AEB Clinic

My sister-in-law had suffered through 3 miscarriages and then found the AEB Clinic. After treatment with them, she had a beautiful baby boy. Although she said she could never be 100% sure that their treatment resulted in their boy because of all of the opposing opinions regarding immunology and pregnancy, it obviously didn’t hurt. She mailed me the book and I signed up online. I mailed my medical records and waited.

After having received everything, it only took a little over a week for AEB to call me with instructions about what tests I had to have. They emailed me a bunch of test slips for blood work…some I could get done at a lab locally, some had to be done at their lab which meant I had to have my blood drawn and then FedEx it to them priority. That’s right, I had to FedEx about 30 vials of blood, some my husband’s, most mine. They also wanted me to do an endometrial biopsy which is alleged to be more painful than the HSG. I opted to wait on that one.

Blood Tip

It’s not easy to find someone who will draw your blood and then give it to you. Most labs will not do it. I had to coax the nurse at Dr. D’s office to do it for me. But first I had to call Dr. D’s lab and have them send over all of the vials that I would need because there were so many and Dr. D’s office didn’t just have them lying around. Dr. D’s nurse drew the blood from me and my husband and then I had to write our name, date and time, and roll up each vial in a paper towel and put them all in a zip-loc bag. Then I wrapped the bag in bubble-wrap and put it into a box along with the test slip and my credit card info.

FedExing Blood

We tried to do it the right way, we called FedEx ahead and told them what we wanted to ship. They told us we could go to the “hub” and do it from there. So after we had all of our blood drawn, we get to the hub and they tell us we needed the “dangerous goods” expert and he wasn’t there and wouldn’t be there until after the cut-off for that day’s shipment. I wasn’t about to have 30 vials of blood drawn again, so we went to a different FedEx and kept our mouths shut. We went out for a celebratory cocktail and the blood arrived just fine the next day. My husband got worried the last time we did this, because the FedEx label specifically says we’re shipping to a lab. But they don’t ask what it is and I don’t tell them. I also didn’t fill out the part where it says “are these dangerous goods”…both times so far the FedEx employee just checked “no” without even asking. So maybe not totally ethical/moral, but did I mention I would have had to re-draw 30 vials of blood? I’m not condoning the practice, just recounting my story.

Dr. Stricker Conference Call

It took about 3 1/2 weeks between shipping blood and having my conference call with Dr. Stricker. A couple days before, AEB mailed me the results of all my blood tests, just enough time for me to drive myself crazy on the interwebs trying to figure out what it all meant. But it was worth it because while I was 100% wrong on one or two of the tests, I had a lot of information and was able to ask informed questions while I had the Dr. on the phone.

Another tip…record the phone call. I have a Mac and I opened up Garage Band and started a new track. I put the phone on speaker and held it near the internal mic on the computer (full credit on this one goes to my husband, the genius). There were so many things he said that I just couldn’t remember afterward, even though I was taking notes. It was so great to be able to go back and listen to what he said. By the way, he was really great. He didn’t go over each test, he just started off by telling me each of my diagnoses. Then he told me his suggested course of treatment. When he was done (about 25 minutes later) he asked if we had any questions, which we did…many. He was very patient and answered all the questions we had. I like Dr. Stricker.

My Diagnosis

  • positive for two copies of the C677T mutation
  • positive for two copies of the Factor XIII V34L Gene Polymorphism
  • Thyroid Peroxidase antibody = 318
  • positive for Anti-Phospholipid
  • Antibodies – IgG-Cardiolipin
  • Anti-ssDNA = moderate positiveAnti-Histone = weak positive
  • Leukocyte Antibody Detection Test = TCells IGG = 5.9%, BCells IGG = 14.2%
  • Natural Killer Cells = too high
  • TNF/IL10 = too high

This all means that my blood clots too much, which could have caused the miscarriages…blood not being able to get to implanting baby causing it to sort of die on the vine, so to speak. I also don’t have enough of the antibodies that I’m supposed to have, which could have caused the miscarriages…my body was attacking and killing my baby. I really think that with all of these problems I never would have had a healthy baby, no matter how many times we kept trying. Such a tragic alter-universe.

My Protocol

  • 2 cycles of Leukocyte Immunization Therapy (LIT) to boost my TCells and BCells (antibodies)
  • 2 shots of Humira to suppress cytokine production (whatever that is)
  • daily Synthroid to get my thyroid in range

Levels should be ready for baby-making in two months. Not 3 weeks ago I came across a stash of condoms and considered tossing them, thinking “what could we possibly need these for?” For some reason I kept them anyway. Good thing.

On Cycle Day 6:

  • IVIg treatment to lower the NKCs (Stricker’s opinion this is the most important thing of all for me)
  • Lovenox 1x day (bloodthinning)
  • Baby Aspirin (bloodthinning)
  • Dexamethasone (bloodthinning)
  • Folgard (MTHFR makes it so I can’t process folic acid properly…this is mega-folic acid dose)
  • Progesterone (because why not)
  • Prenatal Vitamin (of course)

Positive Pregnancy Test:

  • Another IVIg and every 3-4 weeks through first trimester Lovenox increases to 2x day
  • aspirin, Dex, Folgard, Progesterone, vitamin, Synthroid all continue

More Blood Tests

Following Dr. Stricker’s call, more test slips from AEB. My husband and I each had to have 3 more vials drawn and then we FedEx’d them to Chicago to test for DQ-Alpha. They used to do this test in the first run of blood work, but now they only do it for people who need LIT, which we do. We also had to both get tested for a battery of infectious diseases in preparation for the LIT. We did all that yesterday. I also had to get a TB test because Humira can like kill you or something if you’ve had TB.

Lyme Disease?

Dr. Stricker also thinks I may have Lyme disease, which is weird. So I have to get tested for that. That’s a whole process because not only do I have to find someone to draw my blood and give it to me so I can ship it to IgeneX lab in Palo Alto, the blood first has to be either “spun” or “separated,” something I am evidently unable to do myself. I’m talking to Dr. D’s office about helping me with that now…ah, blood is fun. If I have it, I’ll have to do at least 2 weeks of antibiotics…not sure how that will mix with the Humira which suppresses the immune system. Will get more info. if the test ends up positive.

IVF?

Dr. Stricker also suggested we do IVF because of my, ahem, age. He said that my egg quality might be bad and even if everything else works, I could miscarry because of a bad egg. If I do IVF, they can look at the eggs and pick the best ones to increase the odds that things will work the first time. Otherwise, I will have to take all these drugs for 3 weeks until I get my period and then start all over again a week later…sounds daunting. We’re not sure yet what we’ll do. Cost is definitely an issue considering I was laid off in March, and Dr. C’s office hasn’t gotten back to me on what IVF will cost. I’ve heard anything from $10k to $100k.

Sister-In-Law

I’m so grateful for her help in this. I wouldn’t know about AEB without her and would just “keep trying” like the other doctors said to do. I am also grateful for her insight and information. She and her husband are smart, educated, level-headed people who don’t just go off doing crazy things. Their insight and advice has been invaluable and I wish everyone knew someone who has personally gone through the AEB process successfully. The message board is helpful but doesn’t really have the whole process in one place. It’s mostly just specific issues as they come up. Hopefully, even if you don’t have a SIL like mine, the first-person account on this blog will make you feel like you do.

Next Steps

So I’ll start on the thyroid medicine tomorrow which will hopefully increase my metabolism and make me less depressed. Now we wait to see what the blood tests say and when we can go to Mexico for the LIT. Such a great time to go, what with the swine flu and all. Very exciting.