I’ve been friends with her since I was nine years old. She never really wanted to have kids, but when her other friend had a baby, and she found out I was trying to have a baby, she decided she didn’t want to be left out. She and her husband tried for two months and then changed their mind…too late, she was pregnant. She just had her baby boy. Here’s a picture. He’s really really really cute.
I got the call today from the lyme doctor and I do NOT have any coinfections! This means that I will not have to take any other crazy antibiotics, and also means, according to lyme dr., I am clear for conception. Husband doesn’t think it’s possible that it would be safe to get pregnant while on all these antibiotics, so I have a call in to Dr. Stricker’s office to make doubly sure. But this is the best piece of news I’ve had in months!
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.
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.
My hair is falling out. Not in big clumps, but when I wash it, a LOT more comes out in my hands than before. This has been happening for a few weeks now. The only thing I’m doing differently is taking Synthroid and Folgard. I googled “synthroid and hair loss” and discovered that hair loss is a side effect of synthroid.
So I need to change medications. I can’t stop taking it altogether, I mean for the first time in my life I’m not cold every second of every day. I realize now how painful the cold used to be for me…like someone was slapping me all the time. Now when a cool breeze hits, I can actually enjoy it. Ah, the little things.
But I really don’t want to lose all of my hair.
I saw a hematologist, Dr. Rosove at UCLA who was recommended by Dr. Stein, to check out the blood clotting issues. He ran the anticardiolipin antibody test again. It was negative.
So…wtf? Do I have it or not? Is Dr. Stricker’s test more sensitive? Or just wrong? I tend to lean towards the latter considering the screen was negative when I had it done in December.
He also said the fact that I am homozygous for the MTHFR gene mutation means nothing. He is also totally opposed to Dr. Stricker’s protocol.
Well, one last opinion will be obtained from another OB that we are consulting with. I am just not comfortable with Dr. D. First, he’s a he and I just don’t feel like he has any idea what I’m going through. Second, I sort of want a fresh start. My husband really liked Dr. D. so he’s a little upset, but I’m sure he’ll like Dr. Park at Good Samaritan just as much. So we have an appointment with Dr. Park on June 23rd where we will undoubtedly get yet another opinion on all of this stuff. I think that will be enough opinions.
I was perfectly healthy just a couple months ago. Now I have Lyme disease, Hashimoto’s disease, gene mutations and blood clotting disorders. It’s amazing what a few tests will do to a person.
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.
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.
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.
Dr. Danzer
Dr. Danzer was of the general opinion that there’s not enough evidence that any of the immunology stuff really does anything. He was most concerned about the Humira and said he would not recommend it. He used to give his patients IVIg but doesn’t anymore, his biggest complaint about it is that it is expensive and unproven. He is also concerned about LIT because there’s a small chance that I could contract a crazy disease from my husband that we don’t know to test for yet. He agreed with the Lovenox, baby aspirin, Dexamethasone (although he would prefer prednisone) treatment, as well as the Folgad. He said he also recommends the IVF with PGD, says I’m the perfect candidate.
Dr. Stein
Dr. Stein said she actually brought Dr. Beer to Los Angeles and was one of his biggest champions. She has attended countless seminars, etc. on Dr. Beer’s protocol. She used to include NK’s and all the other tests in her recurrent miscarriage workup. However, she is no longer a believer. She said the results proved to be too random. It would appear to help some, but not others, for no apparent reason. She believes fully that chromosomes are where the problems lie. She thinks that with PGD testing a great number of miscarriages have been prevented. She has concerns about Dr. Beer’s treatment protocol…she is concerned that LIT may cause me to have serious problems later if I need an organ transplant (it would be more difficult for me to find a match). She believes that my problems are the MTHFR / Factor XIII, APA….blood clotting issues. She strongly advises to stick to the problems we have discovered that are known, and leave the immune stuff out of it. She also said that the immune tests always reveal a problem, they are never totally clean for anyone.
Recap
Summary of opinions from four reputable doctors–Dr. Stricker, Dr. Stein, Dr. Chung. and Dr. Danzer:
IVIg – 1 for, 2 against, 1 no strong opinion either way
Humira – 1 for, 3 against
LIT – 1 for, 2 against, 1 no strong opinion either way
Lovenox/dex/aspirin – 4 for, 0 against
Folgard – 4 for, 0 against
IVF with PGD – 3 for, 1 against
Ultimately this is all our decision, as all the doctors said they would support us whatever we decided to do. We think we’re going to first try the Lov/dex/aspirin starting CD6 and wait on the rest. We are also struggling with whether to do IVF…we don’t like the idea of having to decide that some embryos are good and some are bad. We shouldn’t be making that decision. It’s so hard because I’ll be 41 in November and the clock is ticking, it would be so easy to do IVF, look at everything and weed out the embroys that will not make it. But what if one of the embryos tests positive for downs? I don’t want to have to decide not to have that baby. Plus there’s the whole question of when the soul attaches…having this type of power over life makes me very uncomfortable.
Well, we don’t have to make a final decision today. We’re waiting on the lyme results which will come back next week so this cycle is out (if I have Lyme, I’ll have to have antibiotics which I couldn’t do if I was pregnant). So we have a couple weeks to decide the IVF thing.