posted
Where do I start? My husband and I have lost 3 of our 4 children to an unexplained illness. Very long story. Babies had uncontrolable seizures immediately upon birth. #3 was/is extremely healthy following working with Dr. Klinghardt - thought it was an infection of some kind. I tested postitive for HHV6 and CMV. Did antivirals, fish oil, glutathione IVs. We thought we were in the clear with baby #4 who was born in Feb. 2004 - he passed away in May that year. With him found that I have high levels of an old chlorinated pesticide in my breast milk.
Now pregnant with a little girl - due at the end of July. Have been doing the same protocol that I did when pregnant with healthy #3 w/ Dr. K. Just tested positive for Lyme Disease. We have never had any clear answers as to what was wrong with our other children. Infection? toxins? Conventional medicine could never find anything wrong - every test came back normal - and there have been hundreds of them. They ended up calling it genetic - we have no history on either side. I have never bought into that theory.
Now we're wondering - could it be Lyme? If so, how did it miss our 3rd child, and what can we do about it now?
So far am doing calendula, noni, propolis, astragalus, and considering Zithromax.
Has anyone out there ever enountered a situation like ours? Any thoughts, input, experiences would be greatly appreciated. The clock is ticking......many thanks.
Posts: 2 | From Woodburn, Oregon, USA | Registered: Jun 2005
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posted
Oh my deepest condolences on your losses! I can't imagine the pain you must experience. And the tremendous fear and frustration with the lack of answers. You are tremendously brave and I'll send out good thoughts and hopes for the latest baby.
I'm just a newb here but Treepatrol puts out a lovely newbie list with references for pregnant and nursing mothers with lyme. Look for it. I hope those wiser and more experienced will have more help, but know that you have my sympathy and good hope for your future and that of your child.
Posts: 8 | From Pasadena, California, USA | Registered: May 2005
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posted
Hi Shelli, Welcome to LymeNet. So, so sorry your family has had so much to endure. My heart goes out to you & your husband.
Since you are expecting & just tested positive for Lyme disease, please call or Fax the Lyme Pediatrician in CT. He has treated over 7,000 children with Lyme & is familiar with congenital Lyme. He is absolutely wonderful!!!
Dr Charles Ray Jones New Haven, CT Phone 203 - 772 - 1123 Fax 1 - 203 - 772 - 0682
Drs' names are not given on LymeNet unless they have given permission. Dr J has.
I am so sorry for you and your husband's losses. If everything else has been ruled out, it would not hurt at all to get you and your husband tested for Lyme. There is a lab in California that is very reputable for testing for Lyme.
It isn't 100% positive but it has been proven that Lyme can be passed sexually and through utero.
E-mail me and I can give you the information you need for getting tested at this lab. You can call them and they can tell you the information you need to know as to why to get tested by them.
God Bless.
Maria - firsttwin
Posts: 164 | From Rising Sun, MD, USA | Registered: Apr 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Sorry about your babies maybe a call to Dr Jones may help. Pediatrics Dr. Charles Ray Jones, Pediatrician (203) 772-1123 FAX 1 - 203 - 772 - 0682 111 Park Street, New Haven, CT
Newbies List 06/21/05
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Page 1.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
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.
posted
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.
Posts: 703 | From Almost Heaven | Registered: Aug 2004
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
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
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
Shelly-Since your in Oregon, I suggest you get in touch with the Oregon Lyme Disease Network. www.oregonlyme.org Posts: 1918 | From Central, Oregon | Registered: Apr 2002
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
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
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
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
Posts: 2098 | From San Diego, CA, USA | Registered: Sep 2002
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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]
Posts: 2 | From Woodburn, Oregon, USA | Registered: Jun 2005
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
The Lyme bacteria causes immune suppression. This allows old infections that our body has held in check to resurface-like HHV6 and CMV.
Posts: 2001 | From NJ | Registered: Mar 2005
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
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
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."
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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cafe67
Unregistered
posted
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!
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