Me again

[nervousmummytobe]

Hi guys I have posted numerous amounts but just need some advice and a general
perk me up.
If you don't know I was bitten week ten of pregnancy and noone knew what my
symptoms were until I went to BS after research when NHS told me I was just
anxious ? I tested igenex positive igm at week 30 of my pregnancy ... So
basically lyme went undiagnosed and therefore untreated throughout my second
trimester . I was treated from week 30 up until 40 weeks when I had my baby .. I
was treated with amoxicillin.

Anyway , everyday I am in fear and worry for my baby! Any issue I point to lyme
! I hate the fact that I could have passed this on? He is a beautiful happy
little thing and I feel so guilty and upset that I could have passed this on! He
is so healthy and I am told it does not always pass but what are the chqnces??
Anyone I speak to did pass it on I am yet to hear a positive story ;(

I can't enjoy him without constantly worrying ! What of his future is full of
illness and pain I just couldn't bare it

His cord and placenta was igenex pcr negative - w blot cannot be performed on a
baby unit one year old. I really worry but is there any chance he was spared ?
The only treatment I had was ten weeks amox after the lyme had been u treated
for 20 weeks ! I caught lyme first trimester which is really bad ! I'm going
crazy and I just wanna be able to enjoy him :( I'm scared he might have lyme

[nervousmummytobe]

I also done the placenta PCR and was negative

[nervousmummytobe]

Hi hope ! Thank you so much for your comment.

Do you think I should still be optimistic even if I qs only treated for 10 weeks as I went undiagnosed throughout pregnancy! Was bitten at ten weeks and only started amoxicillin at 30 weeks ;(

Thanks so much for your story

How is your lyme ?
Are you still in treatment.
X

[JackieCalifornia]

Hope!  So good to hear from you and that you are plowing ahead.  See, there is a reason you were named 'Hope'!  :)

Big hugs to you -- come say hi when you can, but mainly take care of yourself and your family.  Yay!

[Hope75]

Hi, I haven't posted on here for a while.  I used to be a regular.  I had a baby Jan. 14th, 2011.  I was being treated since 2009 for a positive Igenex IgM.  The last tick bite I recall was embedded ticks in my scalp in the 1980s.  Anyway, I was scared to death to pass this on to my child, so I feel your pain.  Also, anxiety is my main symptom, alongside my peripheral neuropathy.

Dr. J in DC treated me with amoxicillin and I unfortunately forget the other during the pregnancy.  When I had my child, her cord blood was tested by Igenex.  There are two PCR tests.  One came back positive.  I was DEVASTATED.  I went into post pardum depression and could not function or care for her for about a month.  It was awful.  The pregnancy was great, i felt great.  Labor was not so hot, and her Apgar scores were low because she had meconium staining and the umbilical cord wrapped around her neck.  They had to call the NICU team in to get her to breathe.  She has a LARGE port wine stain, which is a neurological issue with the capillaries.  It is actually classified as "giant" in size.  We are having it lasered off.  

So, after my freak out, we scheduled an appointment with the esteemed Dr. Jones in CT.  We flew there on St. Patrick's day.  He checked her over, fully, and had NO concerns, even with the positive PCR!  He said the PCR is cord blood, so it's my blood mixed in, AND, it could be dead bacteria because the PCR tests for genetic material, so it could be dead or alive.  They even gave me abx in my IV during labor.  He said, "go home, enjoy your baby, this is NOT a lyme baby."

He's the man, the guru of pediatric Lyme, right?  I still worry!  But, I am happy to report that at 2 years of age, she is on target or above for all her development.  She has no problems.  She's healthy!!  And she had a positive PCR!  

Hang in there girl, I understand your anxiety SO well, but so far so good for me and my little girl, so I think the same will happen for you.  I will try to check back in here more often, because I really owe it to the others like yourself, to offer my experience.  

I hope that helps.  Take care and enjoy the bundle of joy!!

Hope

[Ricobord]

I hesitated a bit in posting this link, as I don't want you to read it and get really stressed about everything that COULD happen to a Lyme patient.  But I figure information is power, and is very useful when used wisely.

This article is the most thorough I've ever seen on the effects of Lyme on a body, particularly a child.  It is a series of possibilities, not a list of symptoms of any one person. It may or may not be complete. Early manifestations might only include a handful of symptoms.

Because the doctor featured in the article specializes in pediatric tick borne disease cases, she focuses on manifestations in children, which can be a bit different than adults.  She describes what to look for.

I thought it would give you a reference to look at if your son shows anything that seems worrisome in his future development.  It really isn't useful to just sit and read the whole thing as it's long and involved, especially if you're feeling anxious. Scan it when you're feeling calm.

The one thing I'll point out is that she recommends cord blood testing for newborns with Moms with Lyme, which you did.  But she also recommends testing monthly after that.  Seems rather frequent to me, especially if cost is an issue.

http://www.publichealthalert.org/Articles/scottforsgren/corson.htm

[Ricobord]

Sounds like you're getting the treatment you need.  I can relate on preferring the side effects of Amoxicillin to Doxy.  Me, too.  The up side of Doxy is that is does a better job of killing the spriochetes.  I am glad your doc is already talking about cyst busters.  It sounds like your regular doctor is of the old belief that you have to have it more than a year for it to be "late stage."  That's just not true.  

Be sure not to have calcium rich foods within two hours of the Doxy, or the Doxy isn't very effective.  I wonder how many people failed the early course of Doxy for a Lyme infection because no one told them about calcium.  

According to WebMD, the top ten calcium rich foods include:

1. Cheese

2. Yogurt

3. Milk

4. Sardines

5. Dark leafy greens like spinach, kale, turnips, and collard greens

6. Fortified cereals such as Total, Raisin Bran, Corn Flakes (They have a lot of calcium in one serving.)

7. Fortified orange juice

8. Soybeans

9. Fortified soymilk (Not all soymilk is a good source of calcium, so it's best to check the label.)

10. Enriched breads, grains, and waffles

These diet changes are because of the medicine, not because of what Lyme does to your body. In general, when you're fighting Lyme, you need to ensure you eat really healthy so your immune system has what it needs for the fight.  Saturated fat, sugar, and highly processed foods actually hinder the immune system.  Most of these foods on the list are really healthy.  You just have to limit them to lunch or late evening snacks because of the Doxy.

[mojogal]

I never changed my diet but I never eat sugar anyway and I have heard that isn't good for Lyme. I do take a variety of supplements though along with antibiotics.

[nervousmummytobe]

Thanks for your positive words
Have u changed your diet. Do you have to? I haven't really :/

[mojogal]

I think you are doing the right thing. There are people on this forum who are cured and I personally know of people who are cured. So yes, it does go away.

Just don't go right off the meds when you feel better. Most LLMD say to stay on it for a bit even if you are feeling better to make sure it is really gone.

Like what happened to me recently, my Lyme was hibernating, I felt better and thought I was cured of lyme. My LLMD took a CD-57 blood test and it showed I still had Lyme. It wasn't until something stressful happened that the Lyme came out of hiding and the symptoms came back.

Take care!

[nervousmummytobe]

Thanks guys!
I know I have anxiety I always have done even before the lyme so I'm a real anxious one now lol? I will look into meds with the doctor !

I feel really good lately... It's weird though because I can have no symptoms for a good while and then I will have 2 days of real bad fatigue twitching aches pains shooting pains floaters and then it goes :s

My treatment is still on going ! I was taking the amoxicillin when pregnant and carried that on for an extra month ... I then started doxy at 400mg p day ... To be honest I prefer the amoxicillin less side effects but the doxy seems to be whacking it out ? Maybe putting it into hiding though who knows? I also take a herbal antibiotic called artesunate . I started with gse also!

All in all I'm feeling pretty hopeful in regards to my healing. I see the specialist on march 5th and I think she wants me to start a cyst buster along with 2 other antibiotics . I will probably take them for three months and reassess I'm not gonna come off until I have no symptoms that includes even a minor twitch!

Does it go away completely? Some say no which makes me sad.

My gp who refuses to treat me thinks I'm mad still taking the pills as he said I only had it 5 months before diagnosis but I still had a lot of signs of late stage neuro lyme

[Ricobord]

I typed in a reply on my phone two days ago...looks like it didn't make it.

I wanted to encourage you to go to all to your doctor about the anxiety. Even if you did or did not have anxiety before Lyme, it could be a post-partum body chemistry issue.

I also read an article recently where an LLMD was quoted saying that anxiety in a Lyme patient who didn't have anxiety before usually indicates a coinfection of either Bartonella or Babesia.  I have had both coinfections, but my anxiety pretty much went away after about five months of abx for Bartonella. (I tested positive for b.henselae, the most common version of Bartonella.)  You might consider getting tested (again, if you already have) for both.  Sometimes, they are in hiding until after the Lyme is treated.  

I didn't think I had Babesia after four different herbals had no impact.  But once most of the Lyme symptoms were gone and we tried two anti-Babesia herbals at once, I had a noticeable herx reaction (air hunger, shortness of breath, fatigue, headache). I've since had even stronger herxes to A-Bab and CryptoPlus and two prescription meds.  There is no doubt now that I have Babesia. Oh, lucky me.

I guess my point is, these coinfections can lay low, and then spring forth at a later time. Since you're having trouble getting past the anxiety (now I know what that feels like!), perhaps it is not psychological.

And I am confident his life will not be filled with illness and pain!  You know what to look for, you're planning on tests, and that is the most you can do.  Odds are good he'll be fine.  Any one of us could have a life changing accident whenever we get on the road, but we can't live in fear of leaving the house.  Hang in there!

How are YOU feeling, physically?  Are you still on amoxicillin?  I hope you're feeling good.

[mojogal]

Hi, I was going to say the same thing about the anxiety as Jackie.

I know Lymie's who kids did not get it and one that did get it. They never tested the cord blood with IgeneX like you did. I would have some peace of mind that the results came out well.

My kids are in their 20's and time goes by so fast. You want to enjoy your baby. If your anxiety is caused from Lyme you may want to get retested and if necessary, treat it.

I had to be treated but it has helped me so much.

Let us know what you decide. Take care.

[JackieCalifornia]

To my understanding, Lyme does not always cross the placenta to reach the baby, so things may be just fine, and if the baby seems fine, then cherish that and go with it.  Do the appropriate follow ups for testing on the little one as your docs instruct, but don't borrow worry, as the saying goes.  The baby will pick up on your anxiety, and now is a time for you both to bask in the glory of babyhood and motherhood.

Part of your anxiety maybe from Lyme itself -- if you were not fully treated, the anxiety may be a symptom of that.  Have you been retested since your treatment to be sure you are cured?  If not, it is something I would do.  That you used IgeneX for testing the baby is a good sign, and I would also have my own testing done there if I were in your situation.  You deserve to feel content!  

Let us know what you decide to do -- peace of mind is worth a great deal -- and so is confirmation of your own health.  Take care!