I must have late stage lyme because I was diagnosed 10 years ago with RA when I was in CT. I have since moved to Montana 5 years ago. My symptoms for lyme are all RA-like.

I am still trying to shift into Lyme mode. I keep telling myself I need more proof that this is what I've got. I've been thinking it's RA for 10 years. I'm getting a western blot and possibly PCR testing for backup, but until then I keep thinking I don't really have Lyme and I don't need to worry about bf-ing.

I'm trying to decide if I should emergency wean!! This is very hard for me, because I'm still in denial that it is even Lyme. I've only done the Bowen test so far and there are no LLMD's out here that I can find that can tell me what this really means or what I should do!

Because I've had this for so long - does that lessen the chance of my passing it on to my daughter??

I'm going to get my breastmilk tested, but that will take a couple weeks for results.

So, my question really boils down to this:

Can anyone give me some encouragement on whether or not I should wean - is the lyme bug any less transmittable because I've had it for so long??

Please help (I need a kick in the pants)

Thanks and best to you,
Ellen
 

I'm reposting my experience and info here from SC's thread.

I'm not certain whether risk of transmission lessens if you have had it longer..how has your RA been treated?

Be sure to run your WB at IGENEX, and your PCR's for Lyme, Bartinella, Babesia and Mycoplasma at MDL. These are the most accurate labs for tick-borne diseases, and still..not conclusive, as oftentimes the diagnosis is a clinical one. The testing leaves room for error even at the best labs, much more so at the noit so good labs.

With the Bowen test, you have reason to be very alert to this, and get a thourough evaluation including testing, and a good look at Dpc B's symptom list that I link to below.

Can you get to an LLMD?

I would think, from what I now know after reading all I can on LD, that there is still a risk even if you have long time infection, even if there may be a lesser one.

The baby could carry infection for some time, and then stress to the system, or a tick bite..could bring the infection to a symptomatic level.

The best thing to do would be to contact Doc Jones' office, and speak to his staff re: what to do now, and about how to evaluate the baby, and what to look for.

I would also be sure to read all you can in the post below, and at www.ilads.org and any literature from Lyme specialists archived here..in order to figure out the big picture for you, and possibly the baby.

This has been essential in my ability to gat effective care for me and my children.

All the best in knowledge and guidance..and also, trust your instincts,

Mo

PS:: glad you're in Montana now, isn't that the state with little or no Lyme?

*****Here's my other post on breastfeeding, which I also direct to your question:

SC,

Ugh. I remember how this feels. I know how hard it is to have to consider weening before you wanted to.
You need to seriously consider it, though, for the health of your child. The germ load would be increased as you nurse. I'm sorry to have to say that.

I was also told by ped, as well as my LLMD, that there was no risk (ped said) and the LL said he thought it should be OK if I was being treated.

This didn't turn out to be true. I was with an EM rash when my daughter was nine months old. By ten and a half months, she had symptoms. She is two and a half and still in treatment.

Dr. Charles Ray Jones is the inly pediatric Lyme specialist in the country. He has treated 6000 children with Lyme, and also has overseen numerous pregnancies where Mom has Lyme.

Babies fair well during treated pregnancy, however nursing is contradicted. The baby does not get enough protection even if you are on abx.

If you call his office 203-772-1123, or if Doc C does..Doc J's staff will advise you to stop nursing, and also to test the milk, and perhaps run urine PCR's on baby at MDL.
You can tell them yout test results, and if you have any symptoms (according to Dr. B's Guidelines here: http://www.ilads.org/burrascano.pdf

They can also give you information on what to look for, and the means by which to monitor, evaluate, or treat the baby if necessary.

This is a tough decision, but you must make a fully informed one, and ultimately protect the baby from further risk.

Blessings,
Mo

[This message has been edited by Mo (edited 08 June 2004).]
 

My lactation consultant suggests that it would be beneficial to my daughter for me to nurse her while I am treated but I plan to contact Dr. Jones today to see what he suggests.

I am guessing that I contracted Lyme during childhood. My symptoms are mild and they are the same as they have been for many years. I never would have been tested if my mother, husband and brother had not been diagnosed in the last few months. I got worried when that many people close to me were positive. The CDC says there is little to no risk in this area!

I am curious about any opinions you are forming as your situation is very similar to mine. I am praying for guidence for all of us!
 

I've stopped breast feeding for now. I'm still pumping in case I somehow determine I really don't have lyme (I've only taken the bowen test so far and don't know if I can be fully diagnosed with just that).

I talked to Dr. J's nurse also, she said it can be in my milk, so even though that's not what my Ped. said, I'm not taking any chances.

However, I wonder if I already gave it to my baby, wouldn't the other immune factors in my milk help her deal with this illness.

seems like right after I stopped nursing she started to break out all over her face and now her arms and chest - looks like exzema. I really wish I was still nursing, but I just don't know.

I'm getting my milk tested (PCR) so if it comes out positive, I know to start treating her. If it's negative, I still won't nurse until I've done more research - which I haven't had a chance to do yet.

Best of luck to you. It's such a tough decision.

Ellen
 

See if you can run the milk at Bowen, They use a bigger sample than PCR so it in theory should give a more accurate result.