Jump to content
ACN Latitudes Forums

Scared ... Need some cheering up


Recommended Posts

Hi everyone am new here and looking for some advice

 

When I was ten weeks pregnant I was bitten by a tick but I had no idea about lyme I generally don't look for things on the Internet so I didn't think twice .... Soon after I got random symptoms but nothing that made me give up work ... Symptoms like muscle pain and fatigue .

 

Fast forward 5 months (30 weeks pregnant) I got a positive on a lyme test and was give 1500 mg amoxicillin for the rest of my pregnancy - so ten weeks of antibiotics before I have birth ... I had an undiagnosed case from week 10-30 of pregnancy .. So for half of the pregnancy my boy could have been exposed .

 

I ordered igenex newborn kit which tests cord and placenta via pcr this was negative .. Pcr isn't known to catch many cases so I was not hopeful but since have heard how tissue ( placenta) pcr is quite accurate although of course not fully .

 

My boy is healthy from what I can see , he babbles smiles and is generally a great boy. I can't enjoy this time with him as I'm always worrying ... Forums online tell me he definitely must have it others say 50:50

 

I will retest when his immune system regulates and no longer carries my antibodies so maybe when he's 1 .

 

In the mean time I want to enjoy him but I can't as I'm always worrying about our future . I'm in treatment with doxy now 400mg daily and artesunate .. I'm on my 7th month of treatment and improving daily

 

A few q's

 

Anyone had an undiagnosed lyme inf during pregnancy and child was healthy?

 

Is this a death sentence for him if he does have it(scared by online cases) ?

 

Would ten weeks of abx during pregnancy make a difference?

 

Thank you guys

Link to comment
Share on other sites

Hi everyone am new here and looking for some advice

 

When I was ten weeks pregnant I was bitten by a tick but I had no idea about lyme I generally don't look for things on the Internet so I didn't think twice .... Soon after I got random symptoms but nothing that made me give up work ... Symptoms like muscle pain and fatigue .

 

Fast forward 5 months (30 weeks pregnant) I got a positive on a lyme test and was give 1500 mg amoxicillin for the rest of my pregnancy - so ten weeks of antibiotics before I have birth ... I had an undiagnosed case from week 10-30 of pregnancy .. So for half of the pregnancy my boy could have been exposed .

 

I ordered igenex newborn kit which tests cord and placenta via pcr this was negative .. Pcr isn't known to catch many cases so I was not hopeful but since have heard how tissue ( placenta) pcr is quite accurate although of course not fully .

 

My boy is healthy from what I can see , he babbles smiles and is generally a great boy. I can't enjoy this time with him as I'm always worrying ... Forums online tell me he definitely must have it others say 50:50

 

I will retest when his immune system regulates and no longer carries my antibodies so maybe when he's 1 .

 

In the mean time I want to enjoy him but I can't as I'm always worrying about our future . I'm in treatment with doxy now 400mg daily and artesunate .. I'm on my 7th month of treatment and improving daily

 

A few q's

 

Anyone had an undiagnosed lyme inf during pregnancy and child was healthy?

 

Is this a death sentence for him if he does have it(scared by online cases) ?

 

Would ten weeks of abx during pregnancy make a difference?

 

Thank you guys

 

 

**Congratualtions on your healthy, beautiful baby! Wonderful the Igenex tests came back negative- my advice- take that to heart, and enjoy :-)

The famous Dr. J, premier and most experienced Lyme pediatric Dr., has some recent lectures with statistics:

He states that even an infected, NEVER treated pregnant mother has about a 50% chance of passing Lyme and co. in utero-

that fact is true for me personally, as I had unknown, untreated chronic Lyme with 2 pregnancies -

and one child is completely healthy and neurotypical,

and the other child was born very distinctly different- suffering -

we have been treating her health issues for 4 years, she is almost 8,

and she is presently doing well- typical classrooms with good grades, has friends- no pain.

I also treated myself (with 2 LLMD's) for 18 months with extensive antibiotics, herbs, supplements-

been off all since January, and am doing well, too.

There is hope :-)

Enjoy your baby!

Link to comment
Share on other sites

My DD (now 11) has had problems since birth - most of the symptoms Dr J lists for congenital lyme - and our LLMD feels that she was indeed born with lyme. The immune system is so important for keeping lyme in check. My feeling now is that DD11's poor response to vaccinations (loss of speech and fine motor control beginning 4 days after the 15 month MMR) was probably the result of her infection(s). That her immune system was overwhelmed by the combination of vaccination and infection, resulting in autistic-like symptoms, which, by the way are resolving, even at this late date, with treatment. Please educate yourself on the problems which can be caused by multiple vaccination. If I had it to do over again, I would insist on at least separating the MMR vaccination into it's single components and spreading out the injections.

 

It sounds like you are using a LLMD for your treatment. You have a good resource there, both for yourself and your son. Keep the LLMD up to date with your son's milestones, and they should be able to reassure you whether all is well, or if something needs to be addressed.

Link to comment
Share on other sites

Rowing Mom made some excellent points-

If you google Dr. Sears delayed vaccination schedule, I think there is excellent information presented.

Also, be aware it is possible to pass Lyme and co. through breast feeding - although the mother being treated while doing so negates that possibility-

I tried to find to copy and paste here Dr. Jones ILADS speech where more details were given about signs in a baby-

my own daughter had these red flags:

Inconsolable colic, high sensory irritability, late to achieve physical milestones - late to sit, never crawled, late to walk.

 

Anyway, speaking from my own experience, sometimes it is best to stay off forums and read worst case scenario's- it can become consuming. I understand it can be a fine line between educating yourself and knowledge- and living the life in front of you and counting the blessings.

Glad you have an LLMD, and best wishes and progress in your own treatment-

Link to comment
Share on other sites

Did signs show up from birth? Xx thanks again

Yes. DD was sensitive to light/sound/touch from birth, with excessive startle response and much crying (ie screaming for hours during car rides, but would stop when the car stopped). Although she slept fairly well at a young age, while she was awake she was constantly moving, as though uncomfortable. She did not crawl, but stood and walked at 9 months. She was quite hypotonic and always sat in the W position. She suffered from febrile seizures from 6 months to 6 years. She was on the lower end of the growth charts and did not grow much hair for quite a while. Other than that she was meeting all of her milestones, and more, before the 15 month MMR.

Link to comment
Share on other sites

Thanks for the replies

Does anyone believe its possible to have a healthy baby even when mother has undiagnosed active-infection?

 

Does anyone know how dr j came to the 50 50 conclusion?

 

I'm part of another forum and these women have been treating themselves as their children for years and non of them are improving it seems by the posts .. This scares me . They all lead a pretty bad life and have a 'life isn't worth living' approach again this scares me .

 

My whole thinking is reviled around lyme at the moment and I can't escape that mentality

Link to comment
Share on other sites

I'm part of another forum and these women have been treating themselves as their children for years and non of them are improving it seems by the posts .. This scares me . They all lead a pretty bad life and have a 'life isn't worth living' approach again this scares me .

 

For me, if me and my kids were all well I would be busy living life and not still here searching for answers. There are lots of success stories out there, but these forums are full of people still searching for answers.

 

I'm certain my oldest son has congenital lyme. He was born angry. I know it sounds dumb to say a newborn is angry, but he was. Within the first days it was clear something was really wrong - he was absolutely utterly miserable. He was always extremely agitated, arching his back and stiff, fighting everything. He hated being swaddled, rocked, cuddled, etc. He cried so much, but large movements would soothe him, like the baby swing on high, or bouncing roughly. I won't say he was inconsolable, but the effort to console him was exhausting. In retrospect, sensory issues were severe right from birth, but it took us a long time to recognize them because we had no previous experience with babies or with SPD. In many ways he was the opposite of Dr. Jones list - he wasn't floppy at all, always stiff and fighting. He hit all milestones extremely early, fighting and screaming with absolute determination along the way. So I don't know what to make of his list, or of our situation.

 

I hope and pray that you will be able to enjoy all the moments with your baby without being consumed by the fear of lyme. It is not an easy road, but it is treatable, and you are already on top of it - already testing at birth, and educated on what to look out for. It sounds like you are doing everything you can, so knowing you've got your bases covered, I hope you can start to enjoy your baby. I wish you all the best!

Link to comment
Share on other sites

Thank you! I'm sorry about your son. Is he in treatment now ? X

 

We did 12 months of high-dose combo abx. It was nothing short of a miracle. He was happy and healthy and doing things we never imagined he would/could. Then we had to stop everything except amoxicillin (complicated reasons). He began to decline while only on amoxicillin. Then we had to stop that too, and he is in a psych nightmare of debilitating OCD, severe agitation and mood lability, etc. He is non-functional right now. But a lot of the physical symptoms never came back, so I guess we made some headway. Now we are having a difficult time deciding what to do next.

Link to comment
Share on other sites

Hi we have been treating DD9 for Lyme that went undiagnosed for almost 2 years. I won't lie to you, there have been some very rough patches. But as we enter into year two of treatment DD is doing so well now. My husband said last night, she looks so good she is glowing, its amazing, what is it? and I said she is getting healthy! Adding supplements and herbal anti micrbials have helped. I did only abx for about six months because I was really nervous about anything outside the mainstream and I also wanted to let some stuff die off so she would not be overloaded. We see an amazing integrative MD I am happy to PM you who is in connecticut. She has really gotten DD through the last mile here. I don't know what the future holds, if we can get DD fully better or if she will have to fight this forever. It sucks but it is what it is. I pretty much only use these boards because I find some of the other baords extremely depressing, and some of the treatments I will just never get comfortable with, for example inhaling silver - there are people that are really, really sick - the sickest of the sick, so its the worst possible outlook. Sometimes there are other things at work. I only use other boards if I have a very specific question that I can't get answered anywhere elsewhere. I do sometimes allow myself to feel sorry for myself, less so now but I find it helps if I let myself do it for 10 minutes or so, and then I can move on. It does make me sad that this happened to my DD but I find solace in helping others not just here but with friends and family. Because of my sharing information two other people I know of have been diagnosed and gotten help, and I am helping another mother with PANDAS. I also will not discuss the situation with anyone not on board with me, its too draining for me to spend any energy "convincing" anyone. People can recover from Lyme, it may be different and a "new normal" but recovery is possible. Use these boards as we are all going through/been through it. You may want to read the book Cure Unknown, it has a lot of information and I found it extremely helpful. Hugs to you.

 

And yes 10 weeks of abx could make a HUGE difference. Not to compare to AIDS, but there was a baby born in the US recently HIV+ and they infused 3 hours of AIDS antivirals right after birth and the baby is completely NEGATIVE for HIV, this is only the second case they were able to cure. So yes I think that makes a huge difference. If your baby is the way you describe then I would take that as a huge positive sign. Just monitor and enjoy your baby and the best to you with getting yourself well.

Edited by Hopeny
Link to comment
Share on other sites

I only treated last ten weeks of pregnancy even though I got bitten week ten - so for ten weeks I didn't have lyme ... Then got bit and had lyme for 20 weeks and then treated with what research tells me Is an average dose of amoxicillin - so technically half of my pregnancy I had untreated lyme and the other half I was either not infected or being treated ( could have been in adequately treated ) ... Do you think he could have escaped it ? I always heard getting bitten in pregnancy is much worse which was my scenario

 

Hope/ how are your children doing? Do you live normal lives or is lyme a big big part? Are thy congenital

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...