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Help, my baby tested positive at one month old
I can't tell you how much I need support right now. LLMD called and said my four week old baby is positive by PCR Cord Blood at Igenex. I am sick over it, physically sick. I have read that PCR cord blood can be contaminated with the mother's blood and I'm hoping that's the case. I want to get a Western Blot. I don't know. Help.
Hope,
I send you a big hug long distance and a psychic cuppa tea and sympathy.
Glad to hear you got some pharmaceutical assistance for the trying times. Can someone go with you to CT? An extra pair of hands when you are dealing with so much could really help. I've reached a point sometimes, where nothing was going right and I had no way to make it go better. Fortunately the last time it happenend, a dear friend was right there and saw the confusion and anxiety I was in, and just stepped in and took care of it. I am the world's MOST independent person, so this was a new thing for me, but the help was just what I needed. If you can get your meds balanced before your trip, that will help too ... just be sure you have an ample supply before you fly!
Yeah, the price of the docs. The only thing worse would be not having the docs around. Just think of it as the best money you'll spend for a long long time.
The day of your appointment is March 17? St Paddy's Day. We're all Irish on that day, aren't we? (It turns out I really am part Irish, I just didn't know it till recently) -- and the luck o' the Irish will go with you and the little one on the trip. My Irish genes say so.
Keep us posted ...
I send you a big hug long distance and a psychic cuppa tea and sympathy.
Glad to hear you got some pharmaceutical assistance for the trying times. Can someone go with you to CT? An extra pair of hands when you are dealing with so much could really help. I've reached a point sometimes, where nothing was going right and I had no way to make it go better. Fortunately the last time it happenend, a dear friend was right there and saw the confusion and anxiety I was in, and just stepped in and took care of it. I am the world's MOST independent person, so this was a new thing for me, but the help was just what I needed. If you can get your meds balanced before your trip, that will help too ... just be sure you have an ample supply before you fly!
Yeah, the price of the docs. The only thing worse would be not having the docs around. Just think of it as the best money you'll spend for a long long time.
The day of your appointment is March 17? St Paddy's Day. We're all Irish on that day, aren't we? (It turns out I really am part Irish, I just didn't know it till recently) -- and the luck o' the Irish will go with you and the little one on the trip. My Irish genes say so.
Keep us posted ...
Took my baby to two places this week and the first place couldn't draw on a baby and they sent me to the hospital who REFUSED to draw blood and send it to Ignenex. I was pissed and had a meltdown. Now I feel that I am experiencing postpartum depression as a result of all of this Lyme mess. I wasn't eating, was dry-heaving, not sleeping, etc. Went straight to my psych and got some meds. I'm coping, but not happy. Thank God for helpful family and friends.
Good news: I got her an appt. with Dr. J in Connecticut on March 17th. He happened to have an opening. Bad news - the price. Wish me luck that I can push thru my panic, anxiety and depression on this plane trip to CT.
Good news: I got her an appt. with Dr. J in Connecticut on March 17th. He happened to have an opening. Bad news - the price. Wish me luck that I can push thru my panic, anxiety and depression on this plane trip to CT.
Yes I try to walk every day, but you're right, it's hard. Thanks again for the support. I am up late and must go, but your post is priceless. Thanks again
I understand about the anxiety. I think part of it is an effect of the illness, and part of it may be acquired as a result of our long journey through the medical profession's confusion and denial regarding Lyme+.
If you are feeling well enough, can you do some exercise of any kind just for a short while each day? Exercise has always been one of those things that was at the bottom of my list, because I didn't need it to release tension: attacking a problem and resolving it was the best way for me to do that, whether it was at work or at home.
But along comes Lyme, and well ... you know how it goes. Even the most focussed mind can't find a quick solution to the problem. Thus anxiety. This means I entirely understand the disease-produced anxiety and the situational anxiety worrying about your baby ... so what can you do to release some of the anxiety? Anything physical, as wiped out as you are. I don't remember if you're a born exercise person, but if not, it's the best suggestion I have right now to help you get through the day.
Hang on, things will be all right. You are smart and strong, and you will do everything possible to take care of your family. Take care -- stay in touch, okay?
If you are feeling well enough, can you do some exercise of any kind just for a short while each day? Exercise has always been one of those things that was at the bottom of my list, because I didn't need it to release tension: attacking a problem and resolving it was the best way for me to do that, whether it was at work or at home.
But along comes Lyme, and well ... you know how it goes. Even the most focussed mind can't find a quick solution to the problem. Thus anxiety. This means I entirely understand the disease-produced anxiety and the situational anxiety worrying about your baby ... so what can you do to release some of the anxiety? Anything physical, as wiped out as you are. I don't remember if you're a born exercise person, but if not, it's the best suggestion I have right now to help you get through the day.
Hang on, things will be all right. You are smart and strong, and you will do everything possible to take care of your family. Take care -- stay in touch, okay?
Thanks Jackie, trying to do something positive each day....my anxiety is on full blast though. will update
Hope,
I can imagine how you are feeling ... and all the hormonal gyrations your body is going through after pregnancy and birth -- it's a lot to handle. And then having this Lyme thing hanging over it all makes it even harder.
I'm not very good at this coping technique, but it might work for you: allowing yourself [1 hour] a day to focus on the Lyme concerns, get down and wallow in them, write down lists of what you're worried about, focus on it, plan what steps to take to deal with the concerns, etc. Then when the hour is up, set the lists aside to work on again in tomorrow's session, and go tend to your family with your heart lighter and your mind focussed on nurturing. Your baby needs you calm and reassuring -- you know how the little critters pick up on everything even though they can barely see at this point and sure can't talk. But they feel, and they feel how you are feeling just by the way you hold them. Taking care of your baby this way will also help you, perhaps.
One of the things I hate most about Lyme is the way it messes with my sense of well-being. I can deal with a lot of bad stuff, but not so much when my state of mind is anxious and fearful, and that's a little gift Lyme brought to me. It's slowly going away over time, but I still have my moments, and if I had a new baby, I'd for sure be anxious esp with health issues overhanging it all.
If you do meditation or mild exercise or anything like that to help you focus and relieve stress, now would be a really good time to try it, for you, for your newbie, and for your family in general. I'm not saying you are responsible for bringing bad feelings to your family, because you are not ... just that there are ways that might help you cope with the bad things the *bugs* have brought. You are a good mother or you wouldn't be worrying so much, but take some stress off yourself if you can, okay?
Keeping all good thoughts for you -- J.
I can imagine how you are feeling ... and all the hormonal gyrations your body is going through after pregnancy and birth -- it's a lot to handle. And then having this Lyme thing hanging over it all makes it even harder.
I'm not very good at this coping technique, but it might work for you: allowing yourself [1 hour] a day to focus on the Lyme concerns, get down and wallow in them, write down lists of what you're worried about, focus on it, plan what steps to take to deal with the concerns, etc. Then when the hour is up, set the lists aside to work on again in tomorrow's session, and go tend to your family with your heart lighter and your mind focussed on nurturing. Your baby needs you calm and reassuring -- you know how the little critters pick up on everything even though they can barely see at this point and sure can't talk. But they feel, and they feel how you are feeling just by the way you hold them. Taking care of your baby this way will also help you, perhaps.
One of the things I hate most about Lyme is the way it messes with my sense of well-being. I can deal with a lot of bad stuff, but not so much when my state of mind is anxious and fearful, and that's a little gift Lyme brought to me. It's slowly going away over time, but I still have my moments, and if I had a new baby, I'd for sure be anxious esp with health issues overhanging it all.
If you do meditation or mild exercise or anything like that to help you focus and relieve stress, now would be a really good time to try it, for you, for your newbie, and for your family in general. I'm not saying you are responsible for bringing bad feelings to your family, because you are not ... just that there are ways that might help you cope with the bad things the *bugs* have brought. You are a good mother or you wouldn't be worrying so much, but take some stress off yourself if you can, okay?
Keeping all good thoughts for you -- J.
Thank you Jackie and Carrie, your words of encouragement are so needed right now. I am beside myself.
I suspect many people have Lyme and/or co-infections, either from being bitten or from pre-natal exposure, and that a lot of those people never figure out that they have Lyme, because the symptoms can be so very subtle.
I think my family had it for several years, from camping and getting lots of bites, but I didn't get really terribly ill until I got bit again with babesiosis (like malaria). There may be a 'tipping point' where a re-infection or a new or co-infection suddenly overwhelms the immune system, and BAM you're really sick.
That means that there are lots of people walking around with Lyme etc. who aren't showing enough symptoms to cause them to go through the whole diagnosis routine those of here have done.
That doesn't mean testing and treating shouldn't be done, only that getting an infection isn't the end of the world, since we are fortunate to have LLMDs and meds that work.
I think my family had it for several years, from camping and getting lots of bites, but I didn't get really terribly ill until I got bit again with babesiosis (like malaria). There may be a 'tipping point' where a re-infection or a new or co-infection suddenly overwhelms the immune system, and BAM you're really sick.
That means that there are lots of people walking around with Lyme etc. who aren't showing enough symptoms to cause them to go through the whole diagnosis routine those of here have done.
That doesn't mean testing and treating shouldn't be done, only that getting an infection isn't the end of the world, since we are fortunate to have LLMDs and meds that work.
Hi Hope.
First, congratulations on your baby!!! That is so exciting. You were very smart to have your baby tested. I'm not sure what PCR is though. Can you or Jackie tell me.
I often worry about my children. I was just recently dx with Lyme. I began having neuro symptoms after gallbladder surgery and was being looked at for MS and even have 20 lesions on my briain but nothing to indicate MS. First question my MS doc asked me was "have you had lyme disease".. TONS of tests.... I'm 48 now but know for a fact that I was "attached" by a tick when I was young (13 or 14). I often wonder about my kids and if I should have them tested. They are now 25, 22 and 16. I've read that lyme can be passed from mother to baby and I nursed all of my children. I do not know what to do. I'm going to ask my Lyme doctor when I see him in March for a suggestion.
I honestly did not know much at all about Lyme before my DX and am still learning. I can tell you that it makes me SICK to realize just how underdiagnosed and dismissed that this disease is. I feel like I need to somehow be an advocate for Lyme and get involved somehow so that people realize how serious this can be.
By the way, my children are fine and are showing no symptoms, but I still wonder. We've gone camping every summer for a week and did I EVER think about a tick...NO, NOT EVER!!! I'm scared now for my health and for my kids. But....I haven't mentioned anything to them because I don't want to get them worried....like you, I don't know what to do...
Anyway, ENJOY your newborn baby....stop worrying as best as you can. You CANNOT undo anything, so you just have to move forward and you are a great Mom to be researching but remember to enjoy yourself and your new baby too.
Keep us updated.
First, congratulations on your baby!!! That is so exciting. You were very smart to have your baby tested. I'm not sure what PCR is though. Can you or Jackie tell me.
I often worry about my children. I was just recently dx with Lyme. I began having neuro symptoms after gallbladder surgery and was being looked at for MS and even have 20 lesions on my briain but nothing to indicate MS. First question my MS doc asked me was "have you had lyme disease".. TONS of tests.... I'm 48 now but know for a fact that I was "attached" by a tick when I was young (13 or 14). I often wonder about my kids and if I should have them tested. They are now 25, 22 and 16. I've read that lyme can be passed from mother to baby and I nursed all of my children. I do not know what to do. I'm going to ask my Lyme doctor when I see him in March for a suggestion.
I honestly did not know much at all about Lyme before my DX and am still learning. I can tell you that it makes me SICK to realize just how underdiagnosed and dismissed that this disease is. I feel like I need to somehow be an advocate for Lyme and get involved somehow so that people realize how serious this can be.
By the way, my children are fine and are showing no symptoms, but I still wonder. We've gone camping every summer for a week and did I EVER think about a tick...NO, NOT EVER!!! I'm scared now for my health and for my kids. But....I haven't mentioned anything to them because I don't want to get them worried....like you, I don't know what to do...
Anyway, ENJOY your newborn baby....stop worrying as best as you can. You CANNOT undo anything, so you just have to move forward and you are a great Mom to be researching but remember to enjoy yourself and your new baby too.
Keep us updated.
Hope,
What does the LLMD say should be done, in case it's not cord blood contamination? Begin treatment right away?
I am so sorry to hear this, but you cannot blame yourself. I know you are worried about your baby, but you are wise and strong, and you know what to do about getting diagnosis and treatment. If your baby does have Lyme, you are totally prepared to fight the fight --
I have a dear friend who had Lyme when she was pregnant, but didn't know she was infected, and her baby got it too, but it took them quite a while to realize it. The baby is now a young woman and she is FINE -- smart, and sweet, and lovely in every way. And that was without knowing about the Lyme for some time, so there was no prompt treatment.
Does your LLMD suggest that you get the Western blot? Is that so you can be treated as well?
I can imagine how heartbreaking this is, but your knowledge and wisdom will carry the day. Your baby is lucky to be *yours*.
Best always -- let us what transpires and what the doc says, okay?
What does the LLMD say should be done, in case it's not cord blood contamination? Begin treatment right away?
I am so sorry to hear this, but you cannot blame yourself. I know you are worried about your baby, but you are wise and strong, and you know what to do about getting diagnosis and treatment. If your baby does have Lyme, you are totally prepared to fight the fight --
I have a dear friend who had Lyme when she was pregnant, but didn't know she was infected, and her baby got it too, but it took them quite a while to realize it. The baby is now a young woman and she is FINE -- smart, and sweet, and lovely in every way. And that was without knowing about the Lyme for some time, so there was no prompt treatment.
Does your LLMD suggest that you get the Western blot? Is that so you can be treated as well?
I can imagine how heartbreaking this is, but your knowledge and wisdom will carry the day. Your baby is lucky to be *yours*.
Best always -- let us what transpires and what the doc says, okay?
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