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Updated 06/21/05
Posted by Kara Tyson (Member # 939) on :
I am sorry for your loss.
Have both of you been tested for Tay-Sachs? Although it is known as a "jewish" disease, it isnt.
It is a disease in many groups of people--including Cajuns who live in the St. Charles, Louisiana area (who never have been Jewish).
Most ob's/ geneticist wouldnt think of running the tests unless the couple is Jewish, missing possible victims to this awful genetic disorder. The disease normally moves slower than what you are discribing but coupled with Lyme..you just never know.
Just a thought.
Kara
Posted by Biting Back (Member # 6018) on :
I'm so very sorry for your losses. Since you tested positive for lyme, the best thing you can do for your baby is to take the zithromax and follow-up with an experienced LLMD. I lost 6 babies and discovered last year I'd had lyme all along.
Will be keeping you and your family in my thoughts and prayers.
Posted by Linda LD (Member # 6663) on :
Sheli,
You and your husband have my heartfelt sympathies and prayers. You are very brave.
Both my children were born with LD. One had undiagnosed bellspasey at 6 weeks. The other was failure to thrive after being born over 8.5 pounds.
I urge you to follow cbb's advise and call Dr. Jones immediately.
God bless,
Linda
Posted by Lishs mom (Member # 2344) on :
Shelly-Since your in Oregon, I suggest you get in touch with the Oregon Lyme Disease Network. www.oregonlyme.org
Posted by Linda LD (Member # 6663) on :
Shelli,
CALL BOTH!!!
Call Dr. Jones--he will help you through this--you have to press through with an emergency message and just tell the folks that answer what you told us.
Dr. Jones is a national treasure.
L
Posted by tabbytamer (Member # 3159) on :
Shelli,
So sorry for all your pain and loss.
As you can see, there are many wonderful people here that are willing to share their experiences and suggestions.
Let's do everything we can to keep you and your baby girl well. Also, as you learn about Lyme, you will find out about signs and symptoms you can watch for in your baby #3.
Dr. Jones is the pediatrician to see regarding Lyme. He used to be able to even answer questions over the phone for open-minded doctors, in case a trip to Conn. is out of the question right now.
There is also a program called Angel Flights that offers free flights for children for medical reasons.
Welcome. Glad you found us. If it is Lyme that has been affecting your family, try to take comfort in knowing that there is something that can be done to help.
------------------
Tabby
Posted by Shelli Nanez (Member # 7499) on :
quote:
Originally posted by Biting Back:
I'm so very sorry for your losses. Since you tested positive for lyme, the best thing you can do for your baby is to [b]take the zithromax and follow-up with an experienced LLMD. I lost 6 babies and discovered last year I'd had lyme all along.Will be keeping you and your family in my thoughts and prayers.[/B]
Posted by janet thomas (Member # 7122) on :
The Lyme bacteria causes immune suppression. This allows old infections that our body has held in check to resurface-like HHV6 and CMV.
Posted by pq (Member # 6886) on :
This is horrible! My sincere condolences for your great loss!
Posted by pq (Member # 6886) on :
This is horrible! My sincere condolences on your great loss!
Posted by janet thomas (Member # 7122) on :
Do I understand that until just recently you were unaware that you have Lyme disease?
Were you ever tested before?
Women who have Lyme are often advised to take amoxicillin before and during pregnancy.
Lyme may be sexually transmitted. Has your husband been tested?
Posted by janet thomas (Member # 7122) on :
Save the cord blood and have it tested for Lyme-not sure which test-maybe PCR-igenex or MDL or Bowen or all of them-Sometimes valuable time is lost waiting for test results when Lyme treatment is needed.
I spoke to another mother, can't remeber who, who had the cord blood saved and sent to Florida to be saved in a freezer in case future testing was needed.
I am not a doctor, just a Lyme patient who reads a lot. This is not medical advice. Perhaps you should strongly consider starting antibiotics now at a sufficient dose. And also consider if the baby should begin antibiotics treatment ASAP after birth.
Posted by seibertneurolyme (Member # 6416) on :
I vote for staying with Dr K and go see Dr J if you want a 2nd opinion.
In my experience most LLMD's only treat tick-borne infections and don't address viruses and pesticides and other infections or toxins adequately. Your current doctor (Dr K) appears to be trying to treat more than just the tick-borne infections.
Dr K is very experienced in treating Lyme and yes it is unfortunate he did not make this diagnosis sooner, but as they say "lyme is the great imitator."
For info on Dr K's Lyme protocols go to
http://www.neuraltherapy.com Click on articles and protocols.
Bea Seibert
Posted by cafe67 on :
Shelli - don't know what to say, So sorry does not cover it. Just know you are not alone. Wow. this really made me think back and wonder!
I lost a child at 8 months gestation (no explanation) and 13 weeks (down's). Found out I had strep B, which can sometimes pass through mucus plug or baby can contact when passing through birth canal.
One screeing test came back neg. One pos for strep B?
Both boys were born with infections, though? and jaundiced. Treated with antibiotics at birth.
I always wondered if there was more to it though now that I discovered I have lyme.
I had iv antibiotics during births for last two births and probably saved both my two boys.
God bless you and prayers for your baby girl, you and your husband!