Wednesday, April 4, 2012

Better Days Ahead




Well, my short break turned into a long one, but not for depressing reasons. When I ended my IV treatment early this year, the hearing issues I was experiencing cleared up almost immediately, (we're thinking it was an issue with the antibiotic itself) and surprisingly, I began to improve on my own.

I've said many times that the people who have had success with Lyme treatments are not hanging around the internet talking about Lyme Disease; They are out living and moving on. Most want to leave the disease behind and not look back. Over the past few months, that's exactly what I was doing--living a (mostly) normal life with my family.

We were blessed with an early spring here, and I can't begin to describe how grateful I feel to have been able to run with my kids outside, take them to parks, do simple tasks like grocery shopping or running mundane errands. These activities did not leave me bed-ridden for days or weeks afterwards. On a personal level, I was able to reconnect with old friends, make some new friends, go out on a few dates with my husband, and even shop for some clothes that don't have elastic waistbands!

My husband found a new job that he loves, and with the help of our part-time college student, I've been able to care for the boys much better than I've been able to in the past while Mike is at work.

Unfortunately, I began a setback about three weeks ago, but I'm refusing to let it get me down. With the help of a new doctor, I am getting back on meds (antibiotics and herbals), and I will continue to hope that a day will come where I will experience more healthy months than sick ones.

I've received many kind notes lately asking about my whereabouts and if I will continue this journal. The answer is yes, I'd like to keep this open to help and hopefully share some stories from other women who have gone through a Lyme pregnancy. In the meantime, I'm compiling a list of FAQs I often answer and will be posting them within the next few days.

Thanks for your patience and support. It's helped tremendously.

21 comments:

  1. So glad to hear!!!!! I have been thinking about you and wondering how you and the fam have been!

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  2. Thanks for the update. How's the little one doing?

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  3. Thank you for this blog. I am beating this lyme at the moment and want to have a baby soon, but waiting for my body to be much stronger. Thank you again for your input on the subject/pregnancy and lyme.

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  4. Ady Glazer-IsaacMay 18, 2012 at 10:05 PM

    Hi Sara, I wanted to start by saying thank you for your blog, I have always thought that I never wanted kids, however my "clock" must be ticking becasue for the last few months the thought of having and wanting a baby creeps up on my mind almost every day and is immediately followed by "but what if I pass the Lyme to the baby?"
    I'm 29 now and have been dealing with Lyme since I was 23. I was miss diagnosed for 2 years with all my doctors telling me "Lyme doesn't exist in FL. I was then put on prednisone for those 2 yrs to control the severe arthritis. Anyway, I finally found a LLMD in the Tampa, FL area who tested me thru Igenex and I came back SCREAMING positive (thanks to the steroids) and started IV antibiotics. I did many combinations of 2-3 different antibiotics at a time (oral with IV). After 9m of IV I was sooo bad I couldn't walk anymore, my mom would have to carry me from room to room, shower with me, etc. I was getting worse and had had it. I at that point started looking into alternative treatments and I fell onto the Rife Machine. Have you ever looked into it? I purchased one and started using it, within about 5-6m I was 75% pain free! Do I still have Lyme? Yes, but it's manageable. I also take supplements and drops to help give back my body what the prednisone and antibiotics stripped from me as well as what the Lyme likes to munch on.
    Another question I have for you....you mentioned that there is a difference in chances of passing to babies with 1 and 2 antibiotics, does it matter which 2 prego safe antibiotics works best for Lyme? I know that not all antibiotics kill Lyme.
    Well thanks again for your blog, I hope that you are doing well as is your family.

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  5. Hi Sara,
    I thought I have read every Lyme blog out there... and then today in a desperate internet-land search, I found yours. I am truly glad I did. I had Lyme for about 2 years, got diagnosed (finally), and have been treated for the last 9 months. I found out last night I am pregnant. As typical with my life, this is highly unplanned and I'm not sure I have quite wrapped my head around it yet. Coincidentally, today was also going to be my last day on both oral (alinia/factive alternating) and IV abx (Vanco 1.5GM BID). My LLMD said that I will be "fine" during pregnancy, but will be monitored, but didn't prescribe anything to me. Will you please tell me which two oral antibiotics your LLMD suggests? My OB is willing to prescribe, but isn't familiar enough with the disease (then again, who is?). I am only 4 1/2 weeks along, and in a panic state as I wouldn't dream of putting my worst enemy through Lyme (babesia, bartonella), much less my own child.... thank you...

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  6. Hi ladies, Thank you for the well wishes, and I apologize for the delayed responses.

    ktag: Little guy is doing just fine. We've had both boys tested at this point (IGeneX), and so far no symptoms or positive results for both IgG and IgM bands (past exposure or active infection). We believe that the initial cord blood positive was from me. We all know how unreliable the tests are to begin with, so for now we are just grateful to have two healthy boys and we won't look for problems unless something comes up. :)

    Ady: I'm sorry to hear that it hit you so hard. I understand completely (especially the not being able to walk and needing assistance with everything), and I'm happy to hear that your darkest days are over. As for the abx during pregnancy, I'm not sure there are "best" ones out there. You hear about some people making miraculous recoveries after 6 months of orals, and you hear about some who are still sick after years of different IV abx. I think it's just what works best for you, as long as it's pregnancy safe. Doctors are agreeing more that abx DON'T work for many people, but I think the idea behind the abx during pregnancy is that, in theory, it will protect the fetus from new infection. I remember my doctor saying, "I know you hate Zithromax and it doesn't do anything for YOU, but it's for the baby." Is that scientifically proven? Not yet. I did it anyway because I felt it was better to be safe than sorry, and my babies are healthy. I wish I could tell you whether that was luck or due to the treatment. You can email me for more info or more on the abx I used. Good luck!

    Jennifer: Congratulations! You must be filled with so many different emotions right now. I just got your email and will respond shortly. Please try not to panic! You're going to get through this just fine. :)

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    1. Can you send me the 2 antibiox you too during pregnancy? I am newly pregnant and had a miscarriage n November and am so nervous that it was Lyme that killed my previous baby, and trying to figure out what to do

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    2. I have treated Lyme for 14 mos with antibiox 3 yrs ago, and then herbs, and now rife machine for 4 months. I stopped rifing because was nervous the herxing would be too much for baby. But don't we herx with antibiotics too, and then pass on an atrocious gut to baby? If it means it is more likely my baby will live, of course I will do it, but my home birth midwife will be horrified at how long I have to take them. :) I am not currently seeing a doctor, so also have to figure out who to go to. Any insight or advice or research would be so much appreciated! I can hardly find any information on Lyme and pregnancy, and no one wants to give advice to a prego woman!

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  7. Do you ever post updates anymore???

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  8. Sara,
    My heart goes out to you and I hope you are feeling better as I haven't seen a newer blog post than April. I am going through the testing phases right joe with my newborn and my heart is in knots, desperately hoping he is ok and I haven't hurt him. I have sent you an email hoping you will share doctor's contact info. Sending you positive thoughts. Danielle

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  9. Thanks for sharing your story.

    Sheryl @ www.lymeandback.blogspot.com

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  10. I really wana thank you for providing such informative and qualitative material so often.
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  11. Please let us know how you are doing!

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  12. How are you and the family doing? Hopefully great!!! Are you done blogging?

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  13. Hi all! Doing very well, thank you! Both of my children are as healthy as can be (knock on wood) and I was recently considered to be in remission (something I once thought was impossible for a Lyme patient at such an advanced stage). I apologize for not keeping up with this blog. I am still interesting in blogging, and though I move at a snails pace, I try to respond to all of the questions you ladies send me about Lyme and pregnancy. I will update soon, and please feel free to email. Hope you are all well.

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  15. Hope you are still in remission. Anything specific you would attribute to attaining remission? Just curious…

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