posted
My wife was diagnosed with Lyme disease three months ago. At the time, she was breastfeeding our 7 month old daughter. The md prescribed an antibiotic which would have turned our daughter's teeth grey and possibly also caused bone problems. I found this out by doing my own research. After we told the md this, he prescribed Ceftin instead. The treatment went fine but the md said just to be safe we should have a spinal tap done to make sure the Lyme did not get into the CNS. We had the spinal performed and the md called us a few days later and said everything was ok that it came back negative. This was 3 months ago. Just this week, my wife goes to the md for a routine follow up and the md asks her if she got the results from the Lyme specialist. My wife was confused because the md had already given her the results. The md said, however, that he did not have the results and that we need to get them from the lyme specialist. So we get the results from the lyme specialist and it turns out the they were positive and that the lyme has gotten into my wife's brain where it has gone untreated for the past three months. She was ordered to start iv immediately and to cease breastfeeding. The lyme specialist says that if the lyme had injured her brain that she would have had symptoms already. At this point, however, we are very skeptial of our doctors.
I have three questions: (1) can the brain get injured if it is exposed to the disease for three months even if symptoms dont show; (2) are there any treatment optins that would allow my wife to continue breastfeeding during the iv process and (3) can anyone recommend a good md in the ny area? We live 90 miles north of nyc. Thanks.
Posts: 1 | From hurley, ny | Registered: Oct 2006
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posted
OH MY GOD...how awful!!! I'm no doc, but check out what exactly a positive in spinal fluid means before you determine things yourself. I had sever neurological symptoms and was untreated for nearly 1 year due to the same incompetence of some doctors and I had NO lesions or any injury to the brain and a supposed negative spinal fluid test, so one doesnt necessarily go with the other. No symptoms for her is a GOOD sign! How far are you from NJ? The doc I go to would be thorough and very mindful and knowledgeable about not only your wife, but the baby. Dont freak out yet... But I dont blame you...this whole Lymes thing is scary...especially when you also have your baby to think about! If you put a post on the "seeking doctors" and ask for a LLMD in your area, you'll get lots of feedback. Also you might want to check out infectious disease specialists within large established hospitals...sometimes their technology is far better than a single doc. Just throwing it out there! Hang in... Christina
Posts: 45 | From NJ | Registered: Sep 2006
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You can look for a good LLMD by posting in the "Doctor Seeking Section" here.
Have to agree with the above poster that unfortunately the spinal taps have a low yeild for picking up LD>
Also when you find a LLMD make sure her doctor tests & treats for co-infections too. When you get bite by a tick it most often carries other diseases other than lyme.
One last thing. If she is on & has been on antibiotics please make sure she is taking good pro-biotics spaced at leasr 2 hours apart from her abx. To replenish her good flora.
Please read the newbie link at the top of the page in medical here. Theres alot of good information.
posted
I had a negative spinal and I still had many many neuro symptoms.
I was told spinal can give false results just like blood test can.
Posts: 374 | From NJ | Registered: Aug 2006
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bettyg
Unregistered
posted
quote:Originally posted by madonna:
My wife was diagnosed with Lyme disease three months ago.
At the time, she was breastfeeding our 7 month old daughter.
The md prescribed an antibiotic which would have turned our daughter's teeth grey and possibly also caused bone problems.
I found this out by doing my own research. After we told the md this, he prescribed Ceftin instead.
The treatment went fine but the md said just to be safe we should have a spinal tap done to make sure the Lyme did not get into the CNS.
We had the spinal performed and the md called us a few days later and said everything was ok that it came back negative. This was 3 months ago.
Just this week, my wife goes to the md for a routine follow up and the md asks her if she got the results from the Lyme specialist.
My wife was confused because the md had already given her the results. The md said, however, that he did not have the results and that we need to get them from the lyme specialist.
So we get the results from the lyme specialist and it turns out the they were positive and that the lyme has gotten into my wife's brain where it has gone untreated for the past three months .
She was ordered to start iv immediately and to cease breastfeeding.
The lyme specialist says that if the lyme had injured her brain that she would have had symptoms already. At this point, however, we are very skeptial of our doctors.
I have three questions:
(1) can the brain get injured if it is exposed to the disease for three months even if symptoms dont show;
(2) are there any treatment optins that would allow my wife to continue breastfeeding during the iv process and
(3) can anyone recommend a good md in the ny area? We live 90 miles north of nyc. Thanks.
Madonna, so glad you found this 24/7 educational/SUPPORT board!
I'm so sorry to hear about your wife and baby. You've gotten some good advise above.
hopefully, the Moms with congenital babies with lyme might see this post this weekend, and chime in especially about the breast milk.
My NON-LLMD opinion would be NO; wife still has the lyme spirochetes in her, and that would go from the milk to your baby.
I hope others will comment SOON for you.
I'm sending you a private message, PM, with my 19 pages of newbie links/advise to help you all.
Prayers being sent to your entire family now/later! Bettyg
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Madonna.
Interesting name choice for a husband!!
1. If your wife is going to have IV treatment for neurolyme, I can't imagine it will be OK to continue breastfeeding.
2. If your wife was possibly infected during or before pregnancy, baby should be checked out. You don't give us much history; are you certain when she got bitten?
3. Wife should definitely see an LLMD - she may well have not only lyme but co-infections well out of the realm of knowledge of your MD, who actually sounds like a reasonable fellow! These can really complicate treatment and make for misery.
4. Lyme disease spirochetes can travel to the brain really fast. Spinal taps are negative 70-80% of the time in people with neuro lyme, so pay that no mind. You say, "...even with people who show no symptoms." Makes me wonder why your wife would jump into IV instead of orals?
Normally, unless there's severe neuro stuff going on, most LLMD's don't start off with IV.
Can you tell us more background?
Best of luck - and remember, it can be beaten!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I was thinking the same thing about the name choice, Madonna.
I agree with all of the above -- lyme gets into the CNS really quickly, so most of us have it there. That is not necessarily a reason to worry overmuch, as it can be treated with aggressive abx, etc.
The child, however --- I'd want to get the child tested asap! You mention a lyme specialist -- is this someone who is really, truly knowledgable about lyme? Has your wife been tested for co-infections (which can also be passed congenitally?)
I'm about 90% certain I was born with lyme. I've had a heck of a lot of health problems and emotional problems and neurological problems, etc. from it, and am only now getting treated, as an adult. If your child tests positive, it is important to know that, as it may affect development severely.
After my dx, I insisted that my mom (who has been chronically ill for years) get tested... we were both CDC positive.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by run4fun: Also you might want to check out infectious disease specialists within large established hospitals...sometimes their technology is far better than a single doc. Just throwing it out there! Hang in... Christina
Surely Runs4Fun means well here, but unless you're incredibly lucky with infectious disease doctors, please note that they are usually the worst possible choice for treating lyme!
Runs4Fun, have you been reading LymeNet lately? I'm just curious why you would refer a person with lyme disease to an infectious disease doctor in a large hospital setting??
By a quick perusal of our front page and the new Infectious Disease Society Guidelines, you can quickly see exactly see what the they have in mind for lyme patients. Barely any treatment, and if that doesn't do it, you're (a) mentally ill, (b) drunk, (c) malingering, (d) never had lyme to begin with, (e) blah blah blah blah.
Large hospitals -- especially those inhabited by infectious disease DUCKS -- are the absolute worst place for treatment!
Please ONLY settle for an LLMD. You are going to get the run around elsewhere and waste precious time trying to educate someone instead of getting your wife better.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
I'm confused as to why your wife being told she had lyme three months ago, and being put on antibiotics continued breast feeding? Didn't the doctor tell her to stop then?
I ask this only because I had Lyme disease while pregnant and was on orals and then IV and had many complications to deal with, and breastfeeding was NEVER even entertained.
You need to find another MD and fast. Run from this person if they allowed your wife to compromise the health of your child in that way.
I would get in contact with DR. F at Columbia Presbyterian and have your child evaluated. He will probably send you to another doctor for the necessary medical testing and then reccommend treatment in conjuntion with that doctor.
Dr F was a life saver for my family. I was getting the necessary treatment but my boy wasn't. That all changed when he got involved. Later when my boy was school age he once again came to our aid and got the school system off my back.
I wish you and the family luck. Read "Everything You Need To Know About Lyme Disease" by Karen Vanderfhoof - Forschner. There is another book with the same title (by a different Karen..hmmm?) which I need to check out because that is odd. The author and I had a special bond being we were both in the same boat as mothers of very sick babies. She helped me tremendously in finding a doctor for my son, and in a roundabout way the LLMD I have now.
You will get a good idea of what to look for in a child with congenital Lyme. Their are many who claim it doesn't exist. Myself and karen are very important to the Lyme community as we have documented cases. Most people aren't that lucky. You and your wife might be.
Please get the book, get in touch with Dr. F, and get the ball rolling for the future of your family.
By the way Karen Vandenhoff - Forschner definitely helped in saving my son's life. He was a mess before I met her.
Karen if you read this thank you.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
hmmm, first madonna says md gave abxs, then md ordered spinal, md called with results, then wife goes to md months later md asks if she got results from lyme specialist
so when did she go to lyme specialist? Was it before spinal? Why would a LLMD not mention the risks of breastfeeding? Why isn't/was she on abxs if they have a "lyme specialist"?
Just alot of hmmmmms.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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