At the Hope to Heal Lyme Conference in Reston, VA (2005), Dr. Burrascano
and Dr. Jones both spoke about Lyme and pregnancy. We all are thankful they are doing this research and continue to help mothers and children.

A while back I promised to report anything I heard about this topic.. and I will do so now for those with Lyme who are considering becoming pregnant. This is only a small portion of the report. Please order a recording of the programs for more detailed information.

**Any stage of active Lyme can affect the fetus at any stage of pregnancy. Problems include- miscarriage, still birth, serious birth defects, apparently healthy babies who become ill later on, and sudden infant death.

Study of 66 women concluded:

If the mother is kept on appropriate antibiotic therapy for the duration of the
pregnancy.... (IMPORTANT- Antibiotics should begin **BEFORE** conception and be continued until AFTER delivery), then no adverse fetal outcomes were reported that were related to Lyme disease.

No adverse effects for the baby from the antibiotic therapy.

Breast milk can carry the Lyme spirochetes and can possibly be infectious to the baby.

Serious post partum depression is VERY common and should be expected.

Parents MUST arrange for help at home for at least the first month after delivery.

Mothers MUST follow a rigid schedule. Antibiotics can be specific for the
mother and safe.. and can include orals, IV's, and/or injections.

Antibiotic levels must be monitored regularly if orals are used.

NO breast feeding.

At delivery the babies cord blood and the placenta should be tested for Lyme,
Bartonella by PCR and culture if possible.

Babies urine must be tested monthly for Lyme by PCR.

LLMD to follow babies progress.

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Notes from Dr. Jones, who has treated over 7,000 children with Lyme disease.

Over 300 of these children have Lyme as a result of trans-placental or breast
milk exposure to Lyme. These children have gestational or early neonatal Lyme disease from their mother's undiagnosed, untreated, or inadequately treated Lyme disease. These children had a myriad of problems which
improved or resolved with prolonged oral or IV antibiotics. Of the 300 children, several have been off antibiotics and are doing well, so far.

Mothers of gestational Lyme disease children have frequent miscarriages. Most of their pregnancies are difficult and most of the children born have manifestations of the disease at, or shortly after birth.

40 percent have gastroesophageal reflux with vomiting and coughing

80 percent irritability

60 percent have low grade fevers, pallor, and dark circles under their eyes

72 percent have fatigue and lack stamina

23 percent have secondary rashes and 45 percent had other rashes

30 percent had eye problems: posterior cataracts, myopia, astigmatism, conjunctival erythema (Lyme eyes), optic nerve atrophy and optic neuritis and/or uveitis

40 percent have a history of frequent upper respiratory tract infections and otitis, starting in infancy

20 percent have abdominal pain

40 percent have history of noise, light and skin sensitivity

50 percent have arthritis and painful joints

18 percent have developmental delay, including language, speech problems and hypotonia

80 percent have cognitive problems, learning disabilities and mood swings

30 percent have cavernous hemagiomas

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8 of the 66 pregnancies resulted in Borrelia burgdorferi and Bartonella henselae positive placentas, umbilical cords, and/or foreskin remnants.

Those with positive PCR's were treated with 6 months of oral antibiotics and are without symptoms 3 months to 4 years later. There appears to be increased evidence of cavernous hemagiomas in children exposed to treated and untreated Borrelia burgdorferi during pregnancy.

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Dr. Jones described mothers with Lyme who don't have proper treatment can
have ``horrendously bad, horrendously horrible'' pregnancies.

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Thank you so much for this report and getting yourself to the conference despite how you were feeling!!

I'll be looking forward to the report on tape when it's available.

Smiles.....lightfoot

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]

quote:

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Originally posted by pippy:

If a woman has been treated for lyme, is on abx during pregnancy, does the pregnancy make the lyme worse even if she is on treatment or on treatment in remission?

I would expect the post partum problems, just because of the hormones and stress of childbirth.

---

Dr. B mentioned that many women actually feel better during pregnancy. I have heard this elsewhere of women with fibro and other conditions, that it sometimes disappears during pregnancy.

But, Dr. B also warned about post partum problems. I think he said to make sure that you have help around for the first month after delivery.

Don't rule out breast feeding your infant. You can have the breast milk tested as well. Perhaps you can get it tested from Igenex even before the delivery so you know. there is a good chance if you are getting proper abx that there may not be spirochetes in the breast milk. at least maybe not live ones.

I guess some women are able to do this safely.

Hey pippy.. Long time no see! Hope you are feeling better. You asked, "If a woman has been treated for lyme, is on abx during pregnancy, does the pregnancy make the lyme worse even if she is on treatment or on treatment in remission?"

I can't answer that question... so sorry. I don't even know if it was discussed.. or if anyone knows the answer. I would think it would also vary in each individual case. That may be a question to ask either Dr. B or Dr. Jones?? Good luck!

Aniek.. hey there! You said.. "Dr. B mentioned that many women actually feel better during pregnancy. I have heard this elsewhere of women with fibro and other conditions, that it sometimes disappears during pregnancy."

As Dr. B was leaving the conference I handed him a note. I let him know how to fix that problem, once and for all.

HA! OK.. I offered a thought for him to consider. MY theory is.. while pregnant, women produce more Progestrone and less estrogen. I think it is the drop in progestrone right after child birth that causes the post partum depression and other problems. I know I had that problem. VERY good while pregnant.. couldn't be better. But I was horrible directly after child birth. Then I finally "came around". When I got Lymed bad... I started having the same type of feelings eventually. It took years to figure it out. Doctors kept pushing estrogen on me and I kept getting worse and worse from it. That was something they didn't believe because they LOVE to push estrogen on women.

Anyhow.. I took progestrone finally and snapped back to life REAL quick and found the first relief I had in YEARS. Of course it isn't the same for all women.. but so many BIG TIME ducks missed that little ditty for so long.. I wonder if that MIGHT just help folks? Might be worth a try? I also feel more women should perhaps try progestrone. My blood work didn't seem to pick up a lack of it.. but it was VERY depleted in my system. I used the natural progestrone... and it worked wonders.

Christine.. good to know it might help you. If you are seriously considering making babies.. PLEASE be sure to get the best help possible. And please either buy or borrow a copy of the doctors presentations before hand so you will have more information. This was just an overview. I wish you the best of luck.

Hey hey Nuke.. good to see you lighting up the board. You said.. "As soon as Dr. D. clears my blood free of active Lyme my husband and I want to expedite trying to have a baby."

Warning.. you may not like my answers.. and I am sorry if that is the case. But.. you asked the questions and I will share my thoughts on this subject. Pay me no mind if you chose.. but I would be remiss by not pointing out a few things.

As Dr. Jones strongly points out in his presentation.. there is no test to determine if a person is free of Lyme. It is a crap shoot at best. And the problem is.. an innocent child and you yourself would be the ones to suffer if luck wasn't 100 percent with you. If ANY doctor tells you that you are free of Lyme disease.. tell them to prove it.. and once they do... then make your decissions.

You said.. "I know I will always carry the antibody, so is breastfeeding completely out of the question even if Lyme is not in its active stages?"

Nowhere did ANY of the doctors suggest.. in ANY way that breast feeding is acceptable during this process... for ANY reason. BOTH doctors advised against it. If a woman were to be lucky enough to have a healthy baby in the first place.. my thought is WHY take another risk? If one woman has what appears to be a healthy baby after breast feeding.. that is wonderful.. but NOT the norm. And there is NO guarentee the baby will remain healthy or won't be affected later. Since there are many alternatives... and the risk is so great for causing life long problems... you might want to play it safe for the babies sake.

You said.. "Another question is does Lyme damage the uterus and create infertility. I am trying not to get discouraged here so I hope there is some light at the end of this tunnel."

From what I understand and have read in the past.. this is a possibility. My suggestion would be to see ONLY the best doctors before you try to concieve. I am not able to address that question any better than that.. sorry.

You said.. "I definetly need the Zoloft because I have had so many of the "why me" days and it seems like everyone I see is pregnant but me."

Perhaps you might consider waiting until you are in a better "mental place" before considering taking on the enormous responsibilities of raising a child? Having a child while you are suffering so badly from depression that medications are needed doesn't seem to be the best time to bring a child into this world. Raising a baby.. and I speak from experience.. is NOT an easy thing to do RIGHT. You may want to wait until you are in a better place so the baby will have the best of your love and attention. Of course that is MY opinion.

I would NOT give up hope.. not at all. I would work towards goals that would offer you and the baby the best of everything... and then hope that a portion of your efforts rings true when all is said and done.

I do hope that helps. Good luck!

Does La Leche League have any advice about breastfeeding with Lyme? I am such a strong proponent of breastfeeding, I'm not sure what I would do if I knew beforehand that I had Lyme.

Colostrum is so beneficial for health. The attachment and emotional benefits of nursing are so great...I nursed all 3 of my kids for 2-3 years.

But then again, two of my children have Lyme, maybe even three. Only one has really been sick and she has diabetes too (not caused by Lyme).

I think it is preferable to have children with Lyme than no children at all. I treasure my children, Lyme or no Lyme. Maybe it induces guilt to know ahead of time and then bear children, but, looking back, I still have no regrets.

There must be a way to safely nurse...I'm in menopause so this isn't personally relevant but my heart goes out to you guys and I hope there are some answers soon. We need more research!

p.s. I had trouble having my 2nd, took 4 years, and I did have one miscarriage; for a period of time i also didn't ovulate at all. Dont' know how much of anything was Lyme...eventually had 3 kids, but at ages 35, 40 and 42!

My daughter contracted Lyme via breastmilk even tho I was on abx.

La Leche League will not advise this, even tho I gave them Doc J's writings (at the time)..they will not till it is I guess more 'widely acknowledged'.

They feel if Mom is on abx, baby is covered.

This just isn't so..they also feel the spirochete would not infiltrate baby's system
through the digestive tract..also not so..

All it takes is a small amount of spirochetes making it through the systems and able to replicate.

I mean, we all know even on the best treatment with the best Docs, we have no guarantee of eradicating these infections from bodily fluids. At least, not definatively in a limited time frame.
This, even if you know what infections/co-infections you've got.

I'm not down on La Leche, and I am a big supporter of breastfeeding..
but, this illness is far too easily transmissable to risk it.
Doc J's office and staff are adament, because of how many cases they've seen it happen in.

I'm only writing this as food for thought for Moms to be, not trying to be contentious at all.

Even my own LLMD told me it was OK to nurse..
La Lache said OK,
Pediaitrician said ademantly it was OK..
but..I couldn't find one study, not one..that prooved it was OK.
There aren't any..just one was done that tested 50 mother's milk, and found spirochetes in the milk.

So -- they all just do not know enough to say it's OK. In the womb, baby has our immune system working, and with adequate treatment throughout, they do very well. Outside the womb, they are developong thier own immune systems.
Colustrum is a key strenghtener..but the system is a new developing one, and if the colostrum comes with infection...

Then my daughter got very sick, I found Doc J on a wing and a prayer who knew to stop immediately as many cases he has documented transmission via breastmilk..

and my milk was tested at Bowen, positive..
positive milk PCR at MDL,
positive urine and blood PCR for previously pisture of health ten month old baby..
autistic tendancies hit, rapid onset..

(My very first post here was that Summer of 2002,
I think it was a sreaming headline with about 50 exclamation points. I was so devastated because my instincts were strong, and I uncovered this thing like an investigative reporter or something.
I was very distraught by the advise I was given over the weeks I asked proffessionals and continued to nurse.)

Baby responded to abx with initial Herx, and after 2 years continuous aggressive treatment, has been very well, no symptoms.. off abx for about 8 months.

as much as I love and advocate for nursing..I would tell anyone to never risk it, until allot more is known and done about the diseases.

Mo

NUKEGIRL & PIPPY - i am in the same boat as you. We had been very focused on trying to conceive for the past 2 years, until i was just diagnosed with Lyme a month ago. We were actually starting to look into IVF. It was totally heartwrenching to accept that we have to put this on hold for god knows how long and wonder if this is ever going to happen for us. Yes, it seems that everyone around me is pregnant; very tough. I'd love for us to support each other... feel free to email me: [email protected]

quote:

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Originally posted by pippy:
Hi Tincup,
I seem to have miscommunicated....I was not at all advising that someone should just go out and do whatever it takes to have a child because they want to regardless of their health. Not at all! If that were so (God forbid), I would have done that long ago. If it were not such a HUGE thing I would not have waited like I have.

My point was that I understood the poster's frustration and sense of loss. It is a deeply painful and very very personal problem. Unless a woman has expereinced it, it is not possible to truly understand. Which is not dissing those that can't, its just one of those things that is like that.

I'm old fasioned too, and there are lots of children who need homes as well. Having your "own" child is not what its all about, at least for most people, myself included. But for those for whom it is very important, and one of their dreams, I don't want to deny them their grief. It is a loss.

Infertility is a serious hidden disease that does not get the respect for how painful it can be. Insurance companies tend to use that arguement to deny patients treatment. Sounds like another disease I know that gets the rodney dangerfield treatment....

---

Thanks for explaining that in more detail. You are right. I was the one not understanding. Thanks for setting it straight. I edited out the information I posted to you.

Thanks again..

Thanks for the report. Please tell me how I can get the recording you speak of.

Thanks

I not only gave it to him in utero, but futher strenthened it by breastfeeding him...very sad. It breaks my heart every time I think of it. but i didn't know I had it. It breaks my heart more to alll those who DO know they have it and stll choose htis route...

I can't believe I lost two children to lyme and my son will be this way forever because of it..it's a horrible disease...Dr jones said that the abx woudn't have helped...so what do you believe...

your body is never free of active lyme..so waiting for it to happen is silly...it is always there..there is no way to test...so it's alway a crap shoot...just like lyme patients can't give blood....why woudl you pass your lyme blood onto a baby?

jmho

Husband got bullseye in 2001 and treated 21 days) I got reinfected by ticks last year as old lyme symptoms seemed to be coming out.

I am currently under treatment right now... but am getting nervous for my daughter (6.5yrs). She is extremely smart and funny, but today I am home sick with her.

EXACTLY one month ago to the DAY, she had runny stool. This coincidence is freaking me out. At what age and what treatment and testing is done for a child with suspicion of in utero lyme. I also breast fed her.

I had a great pregnancy, giving birth was 18hr w/pitocen. I fear that she also may have been so "colicky" because of my milk" or that she could have been in "lyme pain".

Any documentation or current articles. Also, Dr. J contact information?

dr. jones can be reached at 1-203-772-1123, and his office staff is great at helping or giving you research to look up .

Did you use the progesterone cream, or pills?

Dr B told me, when I asked why I feel worse always second half of my monthly cycle (or from right before my period to right after) he told me it is because of raised Estrogen, which lowers immunity, resulting in increased symptoms.

So, it makes sense if it is the same after pregnancy.

I also felt better during pregnancy, but I did have a complicated pregnancy with threatened miscarriage throughout - but did have a daughter.

This was followed by 2 miscarriages at just about 12 weeks, later. Infertility since then (1999).

Any comments/suggestions would be helpful!

brodius