posted
My Daughter is pregant and has lyme and Bart, she has been sick most of her life, she is 21, she started getting ill at 12, didn't receive a diagnosis until she was 16 has been on everything from orals, herbs, natural remidies, IV,IVIG.
We started to see some improvement after 6 months of IVIG, but we were denied further treatment. Then we discoved she was pregnant.
I am worried sick about her and the baby, anyone with any experience please help. Merrygirl has been wonderful but she has so much to handle I feel bad to keep bothering her.
Posts: 200 | From Massachusetts | Registered: Apr 2007
| IP: Logged |
posted
Dr. J., the best Lyme-literate pediatrician, has developed a protocol for pregnant women with Lyme which can be followed with one's own doctor. Women have gone on to have healthy babies.
PM sent with Dr. J's contact information.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
posted
Your mailbox is full - I can't send you info.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I don't know if it's too late for this, since she is pregnant, but when you get denied for further IVIG treatment, you should fight back!!
I did, and I won (for now anyway). I had to make a complaint through my state attorney general's office health bureau. And since my insurance company denied port care and everything all at once, my case was an emergency, which helped to push it to the top of the line. But in my state at least, they do respond quickly anyway.
I would pursue this again, if it's ok when she's pregnant, which it might not be (don't know). Or afterwards. Since it helped her.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
I treated for lyme while pregnant. My daughter is 12months old. The pregnancy went really well, it was after that things went bad. It has been a year and I am still not where I was before pregnancy. I had a bad flare up after she was born and the whole year has been flare ups. My daughter is doing good with no lyme symptoms. If you have any questions feel free to p.m. me.
Posts: 323 | From Michigan | Registered: Sep 2006
| IP: Logged |
posted
I don't suppose abortion is an option? Why risk all the trouble for both Mom and baby? (Sorry if this offends religious people. Just trying to be practical.)
Posts: 702 | From North Eastern USA | Registered: Dec 2009
| IP: Logged |
posted
How very sad that human life has no value or is not worth fighting for just because it presents a "hassle" in a person's life.
Killing an unborn child is certainly NOT the answer! "Practical" is just the coward's way of getting rid of something they just don't want to deal with or because it's not convenient!!
Whoever said life was fair or that we won't encounter any struggles?
As I said before in my previous post, women have gone on to have healthy babies. The "hassle" is most definitely worth it!! You can do a search about this and read their personal testimonies.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
posted
My pregnancy was very good. I felt well (the best I have felt, before and since I became ill) and I was treated throughout my pregnancy. I think treatment during pregnancy and after if mom chooses to breastfeed is critical. I did bf and was encouraged to by my physician but knowing what I know now I do not think I would make that same decision.
It is very sad someone would even suggest abortion. Sick puppy, I assume from your comment you are not a mother and I hope you have people surrounding you that feel your life is worth the "trouble"
My little one is going to be 2 in June she is healthy and I feel very thankful. I cannot even imagine how I would handle it if she ever became ill. The guilt would be overwhelming but I can't go there.
I did have a flare after she was born and I am still ill now but she is who I look to, to see just how special life is. Her love of life makes me want to be here to see it.
Not much "practical" help on my behalf, although contacting Dr. J is a good idea. They sent me a package with info on pregnancy and lyme.
The post partum period is difficult and even now, I am sure caring for 2 young children has put a strain on my body while struggling with a chronic illness.
That said, my kids have been my light in a dark time. I just spent half an hour going over the logistics of the Easter bunny with my 5 year old, what could be more healing for the soul than that?
All the best to your family
Posts: 199 | From Niagara Falls | Registered: Dec 2009
| IP: Logged |
posted
Mrs. Scampi, I will keep you and your daughter in my prayers.
I don't think it's right that ppl jumped down sickpuppy's throat re: abortion. This decision is horrendous, especially for women with severe health issues who otherwise might not even think of this as an option.
My personal reality is that of having a very sick daughter. The thought of her getting pregnant sends shivers down my spine. We went through our savings to get her healthy, and she still has a long way to go. But, it isn't about the money, eventhough God knows so many of us here have gone broke in the quest for wellness.
It's more about the reality of the situation. The thought of my daughter's health relapsing due to pregnancy and the thought of a baby being born with this damn disease is devastating.
If this was our scenario, we too would get counsel from the great Dr. J. Beyond that, I don't know what we would and wouldn't do.
I don't have the answers. All I know is that no one has the right to judge anyone else. Walk a mile in someone's shoes before you say something --that's my motto.
And BTW, your perspective when you have little kiddos is a lot different than it is when your kids are older. Parenting a 5-year-old is a lot different than parenting a 21-year-old. But you don't know that til you're there, which is a good thing.
~Alana
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
| IP: Logged |
"I don't think it's right that ppl jumped down sickpuppy's throat re: abortion. This decision is horrendous, especially for women with severe health issues who otherwise might not even think of this as an option."
It seems to me you may be the one doing the jumping.
I assumed sickpuppy's suggestion was not from personal experience. And although I do respect ones decision and right to decide to abort a baby that is not what this post was about.
If Ms Scampi had asked should my daughter have an abortion? then the response is appropriate. but she didn't and I believe ms scampi's daughter is 21 years old so that is a decision that is her daughters to make
I was trying to send a message that all our lives are worth the struggle, that little babies life included and even though it can be difficult for me it has been a blessing.
How do you think her daughter feels if she is reading this post? If she has decided to keep her baby and to come on here and to say abort your baby is insensitive.
"walk a mile in someone else's shoes" I am very ill with lyme disease, I had a pregnancy while ill. I did walk in those shoes I know what that is like.
I am not sure I understand where you are coming from in regards to my perspective of parenting but I think I can give a good perspective to Mrs Scampi on what it is like to be ill with lyme disease and parent young children as that is what I am doing right now everyday while I struggle with this disease.
I reread my post unsure if I may have written something that could have been taken the wrong way and do not think I did. I was only trying to comfort her and tell her my experience.
Posts: 199 | From Niagara Falls | Registered: Dec 2009
| IP: Logged |
I don�t know if I was the one doing the jumping, but it really doesn�t matter.
You say that you assumed sickpuppy's suggestion was not from personal experience. And that�s part of the problem. We don�t know each other personally and we shouldn�t be making assumptions about each other.
I don�t know if anyone can say what this post is about, other than Mrs. Scampi. She is a longtime member here who posted that her young daughter who has a long history of tick-borne illness was pregnant. She is reaching out to us. And some of us here have responded.
I don�t think any of us mothers would pose the question �should my daughter have an abortion.�
All I know is that it�s hell to be sick and pregnant. And I maintain that no one has the right to judge anyone else.
I do not advocate abortion, for the record. I have no idea how Mrs. Scampi or her daughter feel reading my post.
I am not in any position to advise a young woman what to do�I just posted my OWN thoughts and opinions. Perhaps my opinion is insensitive, but then again, having an older child, perhaps my opinion is well-received by those whose kids are in their 20�s.
I respect and admire you because you�ve �been there and done that.� You didn�t write anything that could be taken the wrong way. Please don�t think that your efforts and dedication to your children are diminished by what I�ve posted.
Yes, all our lives are worth the struggle, including our little babies. Our babies grow up to be young women.
As a parent of a sick daughter, I can honestly say I do not want to see her go through the hell and struggles of being sick and pregnant.
She was once my little girl. I was you 20 years ago.
I wish you and your kids a blessed Easter and/or Passover. And I wish Mrs. Scampi the same.
Mrs. Scampi, I hope this finds you and your daughter in a good place. God bless.
~Alana
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
| IP: Logged |
I want to say I rarely reply to posts on here. I am not sure why but I do ask questions in my own post. I don't have as much knowledge as some and so in the past have felt my input may not be useful.
When I saw this post I thought I have experience with this and I saw an opportunity to give back and help someone. Since so many people take the time to help me and answer my posts.
I am feeling discouraged and wish I had just kept with lurking. I don't have any fight in me, not even up for a debate to be honest. Need to keep my energy positive.
Mrsscampi, I hope you get some more helpful responses and your daughter gets some comfort in knowing that she can have a healthy baby.
Posts: 199 | From Niagara Falls | Registered: Dec 2009
| IP: Logged |
posted
So the topic is not who is pro/con abortion here but how to help this mother's concern about her daughter's unborn child. Staying like an adult is really the way to be when we have serious illnesses here, not "arguing" like children- just my two cents. I apparently have had lyme for well over 25 years. My daughter is 15. Now that I found out I'm positive she too will have to have a test, however at 15 years old she's very healthy, I have hope that she will be ok and if not, we will deal with that too.
Posts: 17 | From Vermont | Registered: Mar 2012
| IP: Logged |
posted
I offered the abortion idea because... A) I lost a baby which involved 2 trips to the ER and a near death experience for myself. At the time, I did not know I had lyme and co. It took me a VERY long time to recover and after all this I got fired from my job. It also set the stage for my downward spiral. B) I've heard from people who have congenital lyme that they wish they'd never been born C) I have many days when I do not wish to be alive D) How will this young girl provide for herself and baby, even if the baby is not sick. E) I don't think having a baby at any cost is right for everyone.
Finally I shouldn't have posted my idea since it took us off point. Please forgive me. I should've know better.
Mrs. Scampi, I'm sorry about your situation and my heart goes out to you.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
| IP: Logged |
posted
I appreciate all the posts on this thread. They are all very REAL and really convey the pain and suffering of Lyme. I'm so sorry to hear about your terrible experiences, sickpuppy. I hope there comes a day when you feel much better.
Mrs. Scampi, I very much feel for you. My daughter has lyme and is 22 and I worry a great deal about any future pregnancies. I truly hope you can get some advice from Dr. J in CT. That is what I would do.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
| IP: Logged |
posted
It is difficult to remove the emotion from this discussion. SickPuppy, I appreciate your courage to represent an awful choice. The discussion is not complete without it.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I am here foryou mrsscampi, you are not bothering me, I pmd you my email since I am not here as often as before.
I hope to hear from you..
everyone should try not to judge one another. Everyone is entitled to feel how they want.
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
posted
There is a book titled The Silent Saboteur by Dr. Nordquist.
In it, it discusses the extreme importance of dental care and there is some info in regards to pregnancy about it.
In short, make sure she does not have bleeding gums. This is very important.
Also, don't use tradional toothpaste. They do nothing. Traditional toothpaste does nothing to kill the trillions of spirochetes that live in the mouth.
Besides what's mentioned, I use those xylitol packets and use that as toothpaste. Traditional toothpaste that contains xyltiol is not really effective IME so I just use standard xylitol packets used for toothpaste and this has worked well for me
posted
By the way, while I can't find the info right now, Dr. K also talks about the extreme importance of avoidance of EMF in pregnancy where one sleeps.
In short, have her turn off the fuses in the room to where she sleeps.
Additionally, if possible turn off WiFi, remove cordless phones as almost all are on 24/7 even when not placing a call), and other measures to reduce EMF exposure.
Also, avoidance of antibiotics in the childs first years are very important. Use of antibiotics will kill the beneficial bacteria which are greatly responsible for eliminating mercury from the body.
Posts: 52 | From USA | Registered: Sep 2011
| IP: Logged |
posted
sickpuppy, my heart goes out to you and I hope that you are currently doing OK. Thank you for sharing you heartbreaking experience. I am sure that was extremely difficult for you to do.
I am so sorry to hear that you have days you wish you weren't alive. Please know that by your heartfelt post, you surely have touched many, myself included.
I don't know anyone who has congenital Lyme so I can't comment on that. But what did occur to me was your point regarding how will this young girl provide for herself and her baby even if the baby is not sick. Not to mention that IF the baby is sick, the mother might not even know til months or years later.
You are so right, having a baby at any cost is not right for everyone.
Marypart, I too appreciate all the posts on this thread. You are right..they are all very real and convey the pain and suffering of Lyme. You and I are in the same boat. We have daughters in their 20's and can very much relate to Mrs. Scampi and her situation.
jmb, you are SO right. It is difficult to remove the emotion from this discussion. Like you, I appreciate sickpuppy's post and her courage to represent an awful choice, but the discussion is not complete without it.
And merrygirl, I am glad to see that you chimed in. You are right, we should not judge one another.
The most important thing though is how MrsScampi and her daughter are doing.
MrsScampi, please give us all an update as soon as you are able.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
| IP: Logged |
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I've stopped reading this about 1/2 way through...
Back to the original question..Dr. J's protocol is good at preventing transmission during pregancy. He states you need to be on 2 antibiotics and if you are for the entire pregancy there is almost zero chance of transmission.
The drugs of choice are Zithromax and Omnicef
or
Zithromax and Amoxicillin or Bicillin
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I reslly think the least of their worries are toothpaste and emf's
this is an example of why I don't come here much!
bleeding gums are pretty normal in pregnancy due to increased blood volume
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
IT is incorrect that there is zero chance of transmission in this protocol.
Do not be decieved...there is still a great risk of transmission. I took my ceftin and zith faithfully every single day of my pregnancy. MDL tested cord blood, forsskin and blood and my son tested negatvie.
Within 2 months, he was sick. He is now three years old and going through lyme treatment a second time.
Personally, from what i have seen on this board over the course or 5 years, Dr J is wrong if he tells you there is nearly zero chance of transmission. I have seen it happen over and over again. I have seen Dr J give conflicting information regarding many things over the years.
Don't get me wrong, he's a great LLMD and I'm glad we have him, but I personally, don't think he is the "god" he has been made to be here on this site.
Please don't flame me for saying that, it is my opinion only.
That being said, I don't think my son would have been born if I hadn't done all those meds during the pregnancy. So, I would do them again in a heartbeat.
Posts: 1104 | From N.California | Registered: Jan 2008
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Sometimes (especially in my case) these things are not planned. I had an iud in because I was too sick and didnt want to get preg. Guess what? It moved and I got preg with the darn thing in.
So Pregnancy was extremely difficult. Lots of Complications. I suffered every single day. I thought we would both die.. happy to report we didnt. She appears healthy. Cord etc neg.
Its no joke. I would not have done it on purpose. If it happened again, I dont know what I would do!
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I think people need to stop being so judgmental on pregnancy. Leading llmd's say it is doable with the right treatment protocol. Some folks claim their kids still got it. Others like sixgoofykids never were on treatment during pregnancy and all 6 of her kids are fine.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
| IP: Logged |
I hope she and her daughter are getting information/comfort/reassurance from everyone's posts and opinions.
No doubt, all our thoughts and prayers are with them.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
| IP: Logged |
I am happy to report we went to see the OBGYN and had an ultrasound, and he has all limbs,head is normal size everything seems fine, Also went to LLMD and he said he has had 2o pregnant women in his practice and all of them had children with no lyme.
I know there was some very negetive post on here, and believe me you it took me a lot not to post what I thought about them.
But I must add this wasn't done intentional it was accidential, after she started receiving the IVIG she was starting to live somewhat normal, and that is when it happened.
I am a firm believer in God and I hope and pray each day to him for the baby to be healthly, maybe just maybe this little boy will bring my daughter some happiness!!!!!
And thank you to everyone that has been supportive especially Merrygirl.
Posts: 200 | From Massachusetts | Registered: Apr 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic