Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Hi all.
I am kind of overwhelmed right now.
I need advice on what to do. Don't worry, I won't make my decision based on anyone's advice.
But I would just like to know what YOU would do if you were me.
I know that many women with Lyme can and do have healthy babies.
I would not consider abortion unless I thought there was a good chance that this baby will not turn out healthy. I am very sick though.
I know how sick I am. I am really sick. My CD57 is 15. I herx a lot when I take new abx, in a way that tells me that the infections are still there.
Sometimes I feel so weak that my teeth chatter and I shake.
I have had a CDC positive Western Blot. Positive for Babesia as well, even recently. The CD57 was recent too.
I have been more or less disabled with this for almost 8 years. I am not a mild case.
Really I just want advice on if I should keep this baby.
I don't want people to give me advice because they are trying to be optimistic and make me feel better, I want REAL advice.
I do NOT want to knowingly bring a child that suffers like I have suffered into this world. (i am a lot better now than i used to be, if you can imagine)
I hate to say this, but I think if the child were very sick I would have wished I had an abortion early on in the pregnancy, not to spare myself the inconveinence, but to spare the child the suffering.
I know this should be a joyous time, but unfortunately it isn't. When I read the test I started saying, "no...no...no...no..." really forcefully, because I don't feel healthy enough to have a baby, and all I could think of was the suffering I would be causing someone else (the baby).
Can I please get some people's advice on what you would do if you were me? (stay pregnant, have an early abortion, etc)
Feel free to PM me. I cleaned my mailbox the other day some, but I will clean it out more so that no one's message will not go through like usual with me.
Thanks for listening.
PS--I am 25 and married. Money is not really an issue because I know my parents would pay for whatever I needed, and my mom would come stay with me if I needed her to as well. I also do have health insurance.
I am moreso just worried about the child, and I am young so I have time to have children later on when I'm healthier.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I have a question too. I started my Malarone before I got pregnant. It did seem to help me some overall (though I suppose it is possible I got pregnant first, i THINK i just got pregnant last week)
But then, it seems like after I got pregnant, I've been feeling a tiny bit better overall.
My masseuse sort of does this thing where she feels my feet and gauges my energy level, and this week she said, "wow, your 'energies' are higher all of a sudden, this is odd."
So basically I also think after I got pregnant, I got an even further boost, aside from the boost from the Malarone.
I am still very sick though. Today I missed an important event and cried over it, because I couldn't get up the strength to go.
But overall, my face looks healthier and my cheeks are rosier now.
So my question is: If you are a woman with Lyme who gets pregnant, and you start feeling better rather than worse during the pregnancy, does that indicate anything good for the baby?
Like the Lyme women who feel better during pregnancy have a lower rate of transmission?
Because it is starting to look already like I am going to be one of the people with Lyme that feels so much better while pregnant.
I have been more calm, and looked healthier too.
Or, conversely, is that a BAD sign, like the women who feel bad are the ones that have the healthy babies? etc...
posted
I have no advice, since I'm so young and have no experience in this area, but I did just want to tell you that I will be thinking about you. You'll remain in my thoughts. <3
Could Dr. H help with this decision in any way? Past doctors and LLMDs? Anyone who knows your body, your infections and your situation...
I believe in the end, that you'll know in your heart what's best for you and the baby.
If I can do ANYTHING, please let me know.
Posts: 710 | From West Coast | Registered: May 2008
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posted
I hope you don't mind, but I wanted to do something to help (since you've been so helpful to me in the past) and I did a search on pregnancy and lyme and I found this yahoo group for pregnant lyme patients and patients who are trying or thinking about getting pregnant:
I know that this is a personal and difficult decision, especially when you are ill.
According to my LLMD (who been treating over 25 years)-- most of his patients who continued antibiotics during pregnancy had healthy, happy babies.
I'd also recommend calling Dr. J in CT, I know that he sometimes follows pregnant woman and consults on their treatment, etc.
I agree with LittleLymie, in the end I think you will know what your heart's desire is.
I hope that if it is at all possible, you are able keep your baby. I say this as the mother of 3 children, who I can't imagine my life without.
Praying for you.
Posts: 371 | From CT | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thank you so much LL!!!
Yes, I think I will call Dr. H on Monday, and also call my old LLMD since it was only 3 months ago that I last saw him. Hopefully he won't be offended that I started seeing another doctor.
Then I think I will also try to get in touch with Dr. J as well.
At least I'll make some calls. I will report back here when I get input from the doctors.
Yes, I have seen that PregLyme group before. About 4 months ago when I was wondering if babies would ever be safe, I checked it out.
Thank you for the info. Believe it or not, I think I trust the people here a little more because they know me better, but that would certainly be a good place to get info.
THANKS again!!
EDIT: When I said the people here know me better, I didn't mean better than the doctors and hence I would take this advice over doctors' advice....I meant the people at Lymenet know me better than the people at PregLyme. Just wanted everyone to know I'm VERY open to learning from the LLMD's I will be contacting.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
JKMMCO9,
Thank you for the prayers. They are GREATLY appreciated. Thanks for letting me know what your LLMD says too.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
What an emotional time this must be for you with lots of emotions from all angles.
First, I would retake the test. Several times, different brands of test strips.
Then, is there a more accurate test at a ob/gyn's office ?
--
Breath. You have some time. You've been given excellent advice and I think you need to see a doctor who can help you determine if your body can work with you on this. We can't know as we can't see you and we don't have the experience of having seen hundreds (or thousands) of other patients.
Dr. J, I hear offers great advice for lyme patients who are pregnant.
Don't think you have to make any sort of decision right now. After retaking the test and while you wait to talk to the doctors suggested by others above, just take some time to be still with yourself, your thought and your intuition.
This is not a TV program that has to be wrapped up in 22 minutes. Just breathe for now. (After asking why we find out upsetting news on weekends? - so that we can take a breath first and gather our thoughts.)
You are taking the right step in getting referrals to expert LLMDs who can best guide you in this matter.
Hugs galore to you!
Posts: 48021 | From Tree House | Registered: Jul 2007
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Hoosiers51
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Member # 15759
posted
Thanks Keebler!!!! (((hug)))
I think I am also going to have to go to an OB/GYN soon anyways, so I will get the pregnancy blood test to confirm.
I am pretty sure that I am, because now the symptoms from the last few days all make sense.
When I first wrote that post about the spotting, I was saying that we use precautions, but then I remembered that about 5-6 days ago we did not. The reason not that day is because by my calculations that was the day I was supposed to get my period (day 26 for me), and my breasts were sore that day (my PMS red flag), so I figured it was very low risk.
And then when I look at those symptoms I mentioned (the spotting, the cramping, and now bloating and digestive gurgling), it is starting to make sense.
Still, it is very bizarre.....but I do know that my mother was also very fertile.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Antibiotics make birth control pills less effective. (But you probably know this already.)
And, as for other precautions, there is no one way that is 100% effective.
What is that saying? Something like life is what happens when your plans took a day off?
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yes, all my plans have definitely taken a day off! To say the least.
Okay, I better go to bed now......!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Geneal
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Member # 10375
posted
I had a feeling.
Congratulations!
See your Ob as soon as possible.
I was put on pregesterone for the first trimester
Due to cramping and such.
It helped to support my pregnancy.
You must be so excited and maybe overwhelmed.
Remember this....
God gave you this miracle for a reason.
You can have a healthy baby even if you are sick.
Talk to your LLMD and Dr. J.
Sending prayers your way.
Congratulations again.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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hshbmom
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posted
CONGRATULATIONS HOOSIER FAMILY! What great news. I'm thrilled for you.
...just a word of encouragement.
My niece has two perfectly healthy children after having Lyme undiagnosed for over ten years. She was in terrible shape and nearly died several times before she was diagnosed and early in her treatment.
She still deals with Lyme symptoms daily, but she's on her feet being a great Mamma.
I'll have to find out more details but I believe she was on antibiotics for her entire pregnancy with the first, but I don't think she was for the second.
They tested the baby's cord blood at Igenex and also did the urine test (LUAT??) every couple of months for a long time.
Her LLMD consulted with the pediatric LLMD to learn how to prevent Lyme.
She was advised not to breastfeed, which was a very difficult decision.
Your baby is not doomed!
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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hshbmom
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posted
...since you asked for advice about whether you should have an abortion, I would advise you not have an abortion.
I would watch the baby closely the first year or two and treat if anything hints of Lyme. What would that hurt even if it's not Lyme?
Babies can be treated. Get the pediatric doctor's advice. You're probably in the shape you're in because you went undiagnosed and improperly treated. But, you're educated about Lyme and wouldn't neglect your baby's health.
You might want to consult a high risk obstetrician. They probably won't realize the risk involved unless you educate them, but they are more skilled at watching for subtle abnormalities.
Hoosier I'll be praying for you and your precious little one..for safety and good health.
Most women with Lyme have a supression of symptoms during pregnancy, but can crash after delivery. You would want to plan ahead so all you have to do once the baby is born is take care of yourself and the baby. Set up a honeymoom nest in your bed and only get up to go to the bathroom or for a change of scenery. You can have a basket with all of your baby supplies right on the bed, including a drink for you. Let others treat you like a princess.
Let your mom and friends take care of the rest of the stuff...such as cooking and cleaning. Let them pamper you and help you recuperate as fast as possible.
Congratulations!
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
Congratulations! I believe a baby is a blessing from God and you have been blessed for a reason.
That said, I did unknowingly at the time, pass lyme and co-infections to my two children.
In my opinion, it is important that you get some form of treatment during your pregnancy. It would not be to get yourself well at this point, just to prevent lyme and co. from passing to the baby.
My kids see Dr. J. and he has treated many pregnant women. He has even used Mepron safely to prevent babesia from passing to the baby. And I believe Amoxicillin is used to prevent lyme.
But since I'm not a doctor, this is not medical advice. Dr. J's office can help you.
I did feel better at the beginning of my pregnancies and worse towards the end. After delivery, I crashed - sleep deprivation was very hard on me.
I wasn't in treatment, so maybe things would have been better if I was.
I wish you the best of luck. This is a special time for you!
Posts: 581 | From CT | Registered: May 2008
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Vermont_Lymie
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Member # 9780
posted
Congratulations!! You have gotten such great advice above, that I just want to wish you the best.
It is your decision, and you will make the right one with your family.
My llmd uses amoxy with pregnant patients, but of course your doctor would need to advise you on this......
Posts: 2557 | From home | Registered: Aug 2006
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Geneal
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posted
Remember California Lyme?
She nursed her baby for over two years on amoxi.
Without any issues of passing it to her baby.
Just a thought.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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dmc
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posted
To me, that's wonderful news. Congratulations!!!
My sister didn't pass it to her 4th child. Her LLMD had her on Ceftin during pregnancy. She didn't breast feed.
Didn't know she had LD with her first three. Had horrid Post Partum Depression which her LLMD said common in those who have LD after delivery.
I think that's cause the immune system suppresses during pregnancy then "reactivates" after derlivering. Similar to those w/ MS.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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I think you should definitely talk to your LLMD, my LLMD has worked with Dr J, so I know a little bit about things.
Your baby can be tested at birth and if positive for Lyme treated. Many women with Lyme wind up miscarrying due to low progesterone so it is important to look into this.
You also need to condsider the meds you are on now and if they are safe for a developing fetus
I personally would keep it, but I'm almost 40, so my situation is quite different!
Of course it is your decision, but a realistic talk with your LLMD would be prob the first step
Also, the trauma to your body (structurally)from giving birth could also make Lyme worse - You might want to look into cranio osteopathy to address that (different from cranio sacral)
Good luck what ever you decide. I'm always here if you need to talk more
xo Abby
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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posted
Not sure, but I think you need to be concerned about transmitting babesia or possibly the mystery protozoa as well as Lyme. Definitely get good medical advice.
Hoping for a good outcome and congratulations.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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feelfit
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Member # 12770
posted
(((((hoosiers))))))
AS someone above has said, I believe that your intuition will tell you what to do. I would be still and listen to that.
Also as Keebler has said, take a breath, there is time. Weigh everything. Your doctor should have a good feeling for your degree of functionality and whether or not he/she feels that you are healthy enough to go through the process of carrying a baby.
Wishing you peace and comfort, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Dawnee
Unregistered
posted
To be honest, even the healthiest woman can never be certain that her baby is going to come out healthy. I believe all unborn children should have a chance at life.. whatever life gives them. And thats all I'll say about it.
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Hoosiers51
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posted
Just wanted to say thank you for all the responses. I have read them all.
It means a lot! I will continue to update, either here or in a new thread, as my health allows.
I am feeling kind of rough right now actually...feeling fever-ish, so I am going to start a new thread about that and also about Amox to try to get some replies. I am not really well enough tonight to thank everyone individually, but it feels good to see such an outpouring of support and kindness.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Tracy9
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Member # 7521
posted
How are you holding up? Give us an update....
When I think about the lives my children have led with congential Lyme, undiagnosed, there is NOTHING that is so bad they would have been better off unborn.
As issues have arisen and we have learned,we are (actually just beginning to) address them. But nothing, nothing at all they have gone through has ever made me question thier existence.
Like Dawnee said, I think more of children who develop cancer or leukemia, which no one can predict, and spend their whole lives suffering and in treatment and many ultimately die.
Lyme isn't like that. Most lymie kids have a few issues, and get treated. Their lives aren't horrible. Even with all my kids have been through, at 19 and 13 they are very, very happy children who know some amazing things about life they never would have learned if they hadn't had challenges.
In fact I have to honestly boast that my children are absolutely exceptional. They know what is important in life, and value and cherish their health. I don't know how to put it into words, but I think all their challenges as they developed and continue to develop gave them soem extraordinary lessons.
For instance, my 19 year old doesn't party, drink, smoke, or do drugs. He is an EMT and Firefighter (the youngest ever) for our town's volunteer fire dept. He did all this on his own. He actually signed up before he turned 18 without even telling us first. He worked his BUTT off in firefighter school and EMT class.
He was so sick with Lyme (from a bite, chronic, he was actually infected) that he missed most of the last two years of high school and didn't graduate. He managed nonetheless to get into Diesel Mechanic school and graduates in October.
He has had the SAME job since he was 17, the only job he has ever had, and been promoted several times. He never misses work, and is never late.
I really believe my son learned from struggling with Lyme disease (which again, in his teens was from a bite, though I'm sure madeworse by being congenital) NEVER to abuse his body with stupid things like drugs and alcohol, as well a strong desire to be a helper and a healer.
He does get his thrills racing dirt bikes, which I hate, but is safer than motocross or many other things. And, better than partying and doing drugs.
Ryan's congenital issues were never identified as such until long after he became a chronic lymie from a bite. Now in retrospect, we know his seizures and learning problems were from congenital Lyme.
But overall, even with challenges, as any kid can have, my kids have had a great quality of life and are very happy. I don't think congenital Lyme, even if your baby got it which it probably won't, is so debilitating that it is better not to be brought into the world at all.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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posted
OOPS, we were writing at the same time, as we so often do!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Dear Hoosiers51, I live near you, so feel free to PM me with your phone number if you need someone to talk to. We are about the same age, even! I certainly understand how afraid you are. With the Celiac Disease, I have thought about adoption. It is genetic, and I wonder if it would be fair to bring a child into this world knowing they would inherit it. If Lyme is an issue as well, that complicates it further. HUGS!
AZURE WISH
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Member # 804
posted
(((hoosiers))) I am sorry that this specail event was not delivered on your time scheldule and created worry instead of the joy that I know you wanted it to be.
I hope the drs can help you make a decision thats right for you.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I've found it difficult to write you regarding your current situation, but I felt it best to be candid both for your consideration as well as any other woman who may be reading this that finds herself in the same situation. This is an incredibly serious risk based on probability -- the odds really are stacked against you and this child.
The danger to your health is significant. Miscarriage and still-birth is common, You have a co-infection (and who knows what else) that may be passed, your immune system is probably shot, there have been just as many cases of women giving birth to children infected as there have otherwise who received proper antimicrobial care while pregnant. You will be unable to breastfeed. The child may be born with developmental deficits or deformities. If the pregnancy does proceed safely to it's conclusion, I do not suspect you will be in any position to care for the child for quite awhile based on your report, which is another potential issue to consider -- it's a heavy burden to assume.
I spoke with my partner about this situation. It has come up in the past and we've both agreed the risk is unreasonable. She has Lyme Disease, Babesia as well as a host of other infections and is as sick as you presently appear to be.
If your beliefs contradict this advice and you feel the need to proceed with the pregnancy, I won't morally judge the decision.
If you choose to go forward, you also need to understand that you will need to see an extremely competent Lyme Disease specialist who deals with this specific circumstance. When the child is born, the blood, placenta, cord and everything else needs to be tested. I seriously do not recommend self-treatment during this process. Dr. C and Dr. Jones are my recommendations if you proceed.
I highly respect you for coming forth and asking these difficult questions, and asking for advice -- I would have had a lot of difficulty doing the same.
Please private message me if you wish to contact me. I will not see posts you make in this thread. I'll avoid further discussion here in order to avoid inflaming a sensitive topic.
It is an unfortunate circumstance.
Sincerely, Michael
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I am going to try to get pregnant this summer. I believe that we can have healthy and happy babies!
I am 95% certain that I had lyme (undiagnosed) when I had my son 4 years ago (the 22nd is his 4th birthday). I breastfed him for 20 months. He is amazing. Happy, healthy, and extremely intelligent! He has no lyme symptoms at all! If he does show anything in the future, I will be aware and treat.
I am also pretty certain I had babesia and bartonella. Definitely babesia- had the drenching night sweats.
I have decided to treat with amoxy when pregnant and have decided to breastfeed. I thought I wouldn't breastfeed, but then I read the ingredients on formula and seeing how well my son is, I have decided to do it with the next pregnancy. Actually after hearing pregnancy stories over and over it seems to me that the ones who breastfed, have very healthy babies.
I was going to go with what Dr. J recommended until I heard from some other moms on the pregnancy lyme group who said he was seeing 50/50 chances. He is using zithro/ceftin or zithro/omnicef. My LLMD has 3 children with lyme and her deceased husband treated tons of pregnant moms with amoxy and they did not pass it on to the babies. My LLMD recommends breastfeeding. She said that is why all three of her congenital lyme children are so well (she believes).
Congratulations! Please do as keebler said and take a deep breath. It will all work out okay.
Please keep us updated, Maureen
Posts: 871 | From NJ | Registered: Mar 2007
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posted
I also wanted to say that I know lots of women (even some personally) who did not have any relapse after giving birth, so don't believe that you will not be able to care for your baby.
I received no treatment at all with my son (didn't know it was lyme) and I felt amazing during the pregnancy and after the birth. I didn't start feeling awful until after I started weaning him from breastfeeding, but because I didn't know what it was, I didn't know how to treat it.
This time I will be prepared.... and I am not convinced I will relapse.
Posts: 871 | From NJ | Registered: Mar 2007
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posted
i have been blessed with 3 beautiful boys. we did have difficult pregnancies- will say that. progesterone eary on saved my last 2. We have also had the exprericene of 2 misscarriages that were just as devistating to me as mu hubby.
i did not get dx till 8/08- pretty sure all 3 will have congenital lyme. our oldest 12, is worring me and his is on test list next, this month if can get it.
my younger 2 seem healthy, active, WAY too much energy, play all day. now we know, so we can begin to take precaution wiht them and there health and lyme
pls. have high risk/ ID/Lyme lit OB/GYN-- you will need this. i fell into the hands of mine by divine intervention at its best. on 2nd child we did have placenta/cord sent for what we thought was every test under the sun- all-. Trying to find out now if lyme or any co-s were tested then but he will be 9 in sept- those are destroyable records and we did not know then
i felt better during my preg. the symtpoms i was having went away- felt better. but, had preterm labor with all 3 with my 3rd old labor began at 20 wk most dr will not tx, say is non-viable. my ob did tx, we did subcutaneous infustion, fetal home monitoring, the works. very strick bed rest, even with shower schedule.
after delivery, at diff points iwth all 3 my body crashed back out and symptoms progressed each time. then, we were tx "auto-immune" for lupos and poss. chrons based on sympotms. so, went back to my rhum each time and tx's were incrased each time. of course, now i know this is why things are pretty bad for me now
your body, will respond accordingly to what will happen. if you mis-carry then your body was unable to support another life.
if you do carry and deliver, then you have been given a blessing in my motherly, honest opinion. The human body was of intelligent design, we have good dr's who save lives daily- but listen to your heart, pray VERY hard and listen is my sugesstion to you. I could not imagine our lives iwth out our boys, and i can not imagine what would be the case if i was pregnant tommorrow. i honestly think my body would miscarry from my exprience.
my heart goes out to you when this is a time that should bring great joy, i have been there when the news was terrifying. My 2nd son- i was bewing worked up for lymphoma and the blood preg test was + the eve before my surj for biopsy. when the surj called me i was freaked. i though if i have cancer, how can i have another baby?? we had one son at the time
we will start testing our boys now, oldest this month hopefully as me and hubby + (and mother in law) but-- my stance is God will not lead me to this without carrying me through it. i just have days i need to repeat that more often
i ended up on abt during last 2 pregnancies for odd stuff, dental abcess that recurred, upper resp infections- just this and that and was on abt off/on ....praying this kept kids protected.
glad to know you have help--- you will need it, i think that is a very good choice on your part.
best wishes, my prayers to you and your husband. May God work this out the way his plan is for you and your family.
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
One more word of caution -- if you continue with the malarone you need to make sure to supplement with folinic acid. The 2nd ingredient in malarone is one of the anti-folate meds used for malaria.
Hubby takes 4800 mcg of folinic acid daily (2 pills 3 times daily). Uses the Source Naturals brand called MegaFolinic. It is my understanding that by supplementing it may even keep protozoan from becoming resistant to the meds.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I just want to say thank you for all the responses. Since it's late and I'm tired and should get rest, I couldn't possibly respond to all of these fabulous posts in a way that would do them justice.
But please just know that I am reading them all and taking everything that is said here to heart. No advice is bad advice, because I am trying to make an educated decision and weigh everything. No information is bad info, if that makes sense.
Especially since I will mostly be listening to my doctors too, so it's not like there is a lot of pressure on anyone here.
I was initially feeling better (the last week or two), but today it seems I am feeling a little worse. I just HAD to take a nap from 8-11 PM because I couldn't stay awake, which is very unlike me in the evenings. My dark circles under the eyes were horrible when I got tired at 8 PM, and then when I got up, they looked better.
Also, I had a slightly elevated fever starting around 6 PM, which does happen to me at night sometimes even before the pregnancy. I'll get hot to the touch, etc. Blah.
But I have had more muscle/joint symptoms popping up today. It almost seems like the Lyme is not in my brain as much, and now it is moreso like a new case of Lyme where you feel achey and your joints hurt.
Does anyone know if that is a good or bad sign? Seems scary because maybe the Lyme is moving around now, but also seems good because maybe pregnancy is strenghtening my immune system so my body is fighting the Lyme more and this is a herx. Scary, I know.
I will be talking to the doctors Monday. I will get on Folic Acid ASAP. Thank you.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
And yes, the fatigue is completely normal in early pregnancy! I remember being soooooo tired, taking naps during the day. By the 12 week mark, it usually goes away. But I remember thinking that I hadn't felt that bad since my Chronic Fatigue Syndrome diagnosis! My SIL who is pregnant who doesn't have Lyme was very very tired in her first trimester.
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
hi. i think you are incredibly brave to come here and pose your questions so candidly and forthrightly. i'm sorry that what should ideally be a joyous event has come at such a difficult time in your life.
since he and i are outnumbered on this thread, i just want to say i agree with everything metallic blue wrote. without any disrespect intended, it seems many of the folks who responded here are pro-life/anti-abortion. i don't believe moral/political beliefs should get in the way of what is ultimately a very private & individual decision on your part.
if you decide to keep the baby and continue on with this pregnancy, i am behind you one hundred percent, and i give you my congratulations now. that said, here are my honest thoughts:
you are very ill, as you said yourself. while you may enjoy a temporary improvement of symptoms during pregnancy (this is very common, as pregnancy suppresses the immune system and acts as a sort of natural steroid in order to protect the fetus), after you give birth you will most likely crash quite hard. whether or not your baby is born healthy, i think a good question to ask yourself is whether you'll be able to properly care for your child without further compromising your own already precarious health.
if it were me -- and i'm not as ill as you anymore, though i was previously, and i'm certainly not well -- i would have an early abortion. obviously, however, your decision is yours alone and i think if you sit with yourself quietly and listen to your intuition, your innate inner wisdom, you'll know what to do. this is not a race, nor a decision that needs to be made within the next 48 hours. you have some time.
good luck. my thoughts and love are with you, as well as my deepest respect.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
While it is certainly important to consider the next 20 - 25 years for your strength, if you have lots of personal, physical and practical support around you, that VILLAGE to help whatever circumstances that might arise, that is something to add to your list of what's in your favor.
Even if you don't have that "Village" if this feels right to you, is it possible to create that community around not just yourself, but the entire community you live in so that it can be more of a sense of real community as in times past?
I have a friend who is very ill with CFS (yeah, I know it could be chronic infections but that does not go very far with her or her doctors) . . . but she could afford to hire live-in nanny. So, she has some of the joys of motherhood but it's sort of a shared situation with her, sometimes, more of a manager and others doing the one-on-one physical stuff.
Her husband is a hands-on Dad, but he's at work 6 days a week. And there are times he resents her having no energy at all to even talk to him.
As the car pooling stage has arrived (with cutbacks and less hours for the nanny) my friend finds herself as the taxi driver stage - to all the lessons and group meetings and play-dates. It is really exhausting her.
And it seems the kid really needs to talk all the time when in the car - and has some engaging questions and my friend just can't carry on a full conversation. Still, the child is growing into a remarkable human being: kind, inventive, delightful. She may resent her mom's lack of strength but, as she matures, that will come into perspective.
I think because they choose to have no TV (only select videos) that is far easier because the kid does not expect everything she sees on TV or think everyone is perfect. She goes to a private school that avoids as much focus on brands and media hype, too. It helps keep expectations to a more manageable level for the child.
Remember that you are getting treatment, so maybe this will be something that can narrow in and refine your treatment path so that your brain and body will be able to engage fully in days to come. This is the important part - you have a chance at getting better - although I know you have to be realistic about the time-line.
There is much to consider and I know that you will be able to have the strength to assess this from a realistic approach (with some intuition added - and that is far different from wishful thinking) -- with care, your emotional health can handle whatever you decide is best.
Take care, now.
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[ 04-20-2009, 02:14 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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I'm sorry you feel that you are so ill that you are thinking of terminating your pregnancy.
As someone else already stated, as the mother of a child with Lyme disease, there is nothing about their illness that would ever make me wish for a second that they were unborn. Yes, sometimes it is a struggle, but it is so, so worth it!!
Babies with Lyme can be treated, Dr. Jones has treated babies as young as 2 weeks old. My friends daughter was treated by Dr. J from age 1 month- 1 year, and she is now 100%!
I know it is scary, but try not to think of the "what ifs" and focus on enjoying your pregnancy and preparing (as best anyone ever can!) for becoming a mommy
God bless!
Posts: 27 | From New York | Registered: Oct 2008
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I can only tell you my experience and hope it helps you feel better about whatever decision you choose to make.
I have a beautiful 5 year old daughter that I wanted desperately BEFORE I knew I had lyme. I gave her lyme. I found out about my lyme recently (Nov. 08) and have been treating since. I got her and my husband tested.
They are both positive for lyme.
I breastfed for 14 months. And, my doctor said there is NO REASON to deprive a child of breastmilk. Even if you have lyme. It is likely that the child will get lyme in the womb anyway. My daughter never got sick until I quit breastfeeding.
And, I think had I have been treating for lyme when I had her and when I was breastfeeding, she would be ok. (But, I am not a doctor!!)
My preganancy was rough. I was tired all the time, I had a sinus infection most of the time, I had heartburn, my feet were so swollen I could barely walk, but I still love her dearly.
My daughter is a little slower learning, but I read with her often. She is better at math. She cheers and dances, and she is the light of my life. Even when I am sick, and she sits in bed with me and I feel so inadequate as a mother, I love seeing her smiling face!!
I would love another child, but right now I feel it is unfair to the child I have, my husband, and myself. I don't think I am strong enough to handle everything that is on my plate now, much less another child even though I would love to have one.
But, you are already pregnant, and I think that you know your body and your physical condition best. Only you know if you can carry a child or not. And, I think a child without a mother will always feel like he/she is missing something.
And, if that child does have lyme, he/she will surely need you there because no-one can take care of their children like their mother.
My daughter is being treated, and she is tired a lot. But, if you saw her, you would never know she had lyme.
Good luck. Get lots of rest. ***Oh, there is some thyroid condition that will make you feel better during pregnancy, but have terrible post natal depression.*** Hashimoto's disease Check that out!!
Good luck to you, I hope my post makes sense.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thanks for all the advice! Still reading them all. Still means a lot and is helping me think things through rationally. If pregnancy takes a village too, this is definitely my village.
I have started taking more naps during the day....seems my body is really starting to live up to the first trimester symptoms list. Hopefully that is a good sign.
I am doing alright today....spoke with LLMD, and they switched me to Amox and Zithromax, but the more I read, I may ask to be put on Omnicef and Zithromax instead. And we still need to decide if we want to try Mepron too. That will be a big decision.
They said transmission of Lyme is not too likely if I am on the meds. They said the health of the mother is not as much of a factor as whether or not she is on proper treatment.
I am of course a little worried that it depends on who you ask, but no sense obsessing right now when I should be getting sleep.
Left Dr. J a message, still hoping to hear back. I will be more comfortable deciding things after speaking with his office.
Thanks again! Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
When I gave my response, it had nothing to do with a pro-life or pro-abortion standpoint at all.
I have read other posts from you indicating that you did want to have a child one day, so I know it is important to you to have a family. I DO NOT believe that lyme should get in the way of that.
As you said, transmission is not likely if you are on meds. I just wanted you to know that even though I did most likely have lyme when I had my son, he is a happy and healthy 4 year old today! I did breastfeed him for 20 months too!
I wish you the best of luck with everything, I just do not want you to base your decision on this doom and gloom that you will have a horrible relapse after birth or most likely have a sick child. I do not believe that that is the likely scenario if you are on treatment.
I was not even treated when I was pregnant with my son. I felt great during my pregnancy and did not relapse at all after the birth. I am having a positive outlook and believing the case will be the same for me with my future pregnancies.
If you do decide to go forward with the pregnancy, I just want you to know that the odds are in your favor of it all working out.
Also, when I did get really sick (I may have been re-bitten then too, because I did find a tick on me when my son was a baby), I felt like crap, was working, and had a baby to take care of- it STILL all worked out!
I was grateful to have him to take care of when I was sick. He brought happiness to my life in my worse time of darkness. He made me smile, laugh, and was a hugh inspiration for me to get well and have more children!
I did not have the help you will have, I had a 2 hour commute to work both ways, and lots of other crap to deal with and guess what.... today.... I am in remission!!!!!
Good luck with everything. This truly is a happy time, despite you having lyme....
Maureen
Posts: 871 | From NJ | Registered: Mar 2007
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Has your son been tested? I only ask because I didn't realize my daughter was sick, until I finally found out I was sick.
She tested with several major Bb bands.
I am having her treated.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Are there any Moms out there that have babesia whose children also got babesia from the pregnancy? (sorry, I know this is a delicate topic) I am just wondering what kinds of babesia symptoms show up in an infant or child, and what they are like if the child does not get Lyme, just babesia.
I have been trying to look for this info on the Yahoo group PregLyme, but it is sooooo difficult to naviagate. I have been to that site multiple times, and I still don't understand the structure.
When I search for a term, it brings up posts where you have to click on something separate for each response, but each thing you click on lists all the previous responses too. Maybe it's just me, but it's so confusing I can't even use the site.
I keep thinking we need a section on LymeFriends or Lymenet for pregnancy. Something that is actually easy to read. It would be nice for women to know the risks, and how they can prevent those risks.
Also, I have PM'ed people on PregLyme and I don't seem to have an "inbox" where the messages go. That is another worry. I'm not sure I would know if someone even wrote me back.
I feel like there is no where I can go to to ask specific questions about pregnancy and Lyme. I don't want to clog the "Medical Questions" Forum here with my questions. Dr. Jones doesn't see adults, even pregnant adults, from what they told me.
He will speak with my doctor, but "I" would actually like to talk to someone. I completely understand that he can't, because he is so busy. But, I wish there was somewhere else I could go.
Sorry I just need to vent. Thanks.
Posts: 4590 | From Midwest | Registered: Jun 2008
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I belong to the yahoo Preg Lyme (not pregnant, just hope to be one day)
anyway, any responses you get should go to the email you set your Yahoo account up with
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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posted
I am not sure how accurate this is, but I do remember reading a post on the pregnancy lyme group a couple of months ago from a woman who had lyme and babesia while pregnant and was treated with heparin for babesia. I had never heard of this treatment for babesia, so it completely stood out to me.
I do take heparin during a pregnancy because I have some blood clotting issues (maybe it was lyme related, but either way, I will do the same thing in my next pregnancy) so that really stood out to me that that could treat babesia as well.
Maybe someone else has some input on this. I have also read of some women now on mepron, but not sure how safe any of that is.
My babesia is in remission, so I will just take amoxy while pregnant.
Maureen
Posts: 871 | From NJ | Registered: Mar 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am a Mom with babesia who has a child who has it from me.
Both of my children have congenital Lyme.
Only one is symptomatic for babesia.
She did 6 months of one malarone a day.
No more babs symptoms.
I didn't know I had Lyme in my pregnancies.
I didn't think I could have children.
God blessed me with two beautiful babies.
I wish I would have known about the Lyme so that
I could have given them a better opportunity to not get it from me.
However, I have never felt like I was a "bad" mother
For unknowingly passing it to them.
They are happy, healthy and at times, very sassy.
No problems with school at this time.
I had one miscarriage. Supplemented with progesterone for next two.
Had two beautiful babies. No physical deformaties.
No mental challenges.
Make sure you are drinking your 8 glasses of water a day.
Get rest if you need it.
First trimester was the worst fatigue ever.
I remember it well.
Morning or evening sickness is a good thing.
I had both.
This will pass too.
Sending prayers to you and yours.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I had Lyme when pregnant with my daughter. I didn't know I had it at the time, so I did not treat.
She came out just fine.
My LLMD has given me suggestions for what to look out for. He asks about her every time I visit with him.
She probably has antibodies, so I am just very careful not to stress her system. I don't want to trigger anything, if I can help it.
One thing I did do was delay her vaccine schedule by a few months with lame or airhead excuses, e.g., out of town for a couple of months, oops I forgot, stuff like that.
I didn't want to incur the wrath of the doctor, but I wanted her to be bigger and stronger before taking any chances, especially with the heavy duty shots, like the MMR.
So far she is doing fine.
Hope you are feeling well.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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