posted
Here's a little background before I ask my question...
I became suddenly and severely ill(following bulls-eye rash) in March of 2006. Almost a year later I was clinically diagnosed with Lyme Disease and started oral antibiotics.
I kept getting worse due to emergence of co- infections and treatment resistance. For two years I was very close to death, primarily bedridden, and couldn't walk due to Lyme arthritis.
During 3rd year of treatment I started to slowly get better after introducing detox regimen and supplements along with treatment. Also around this time I started having SEVERE chest pains dianosed as costochondritis.
During the fourth year I reached a plateau. My llmd thought Babesia was the reason for my treatment resistance so we started treating for babs and other co infections. It seemed to be effective for awhile but then I reached another plateau.
At that point I was about five years in. Then the costochondritis chest pains started occurring more often. The frequency of attacks went from once every few months to once a month, then twice a month, then once a week, then 3 times a week.
The last one (at the end of August 2011) was so painful I collapsed and my husband rushed me to the er. I couldn't walk and was pale and drenched in sweat and shaky.
A blood test revealed high liver enzymes and ultrasound showed cholecystitis (gallbladder disease).
My gallbladder was on the verge of rupture from stones and I could have died if I hadn't gone to the hospital when I did.
I was admitted to the hospital, started on IV Zosyn around the clock and 3 days later had laparoscopic cholecystectomy.
I was kept in the hospital for 3 more days than is standard because my recovery was more rough than expected.
For the last 3 days I was in the hospital I remained on IV Zosyn around the clock so received a total of 6 days of 24/7 IV antibiotic treatment. I herxed severely and had tremors and neuro chaos.
I expected that my surgery and phsyical trauma would leave me in worse condition for awhile but after I left the hospital my symptoms of Lyme and co infections completely disappeared.
The most surprising aspect was that my nerve pain/lyme arthritis completely vanished. That had been one of my most intense and consistent symptoms.
Before that my pain averaged an 8 out of 10, 24/7 from the onset of my illness. Also my nausea, neuro symptoms, fatigue, etc, vanished as well. I never expected it to last at the time.
Now its 5 months later and I'm still without any symptoms whatsoever. I'm going off all of my Rx meds and functioning with only one nap for an hour a day. I used to sleep 18-21 hours a day which usually consisted of 3 naps, each one at least two hours.
I am still on treatment for Lyme, just to be safe, but not as aggressive as before. I no longer have any herx symptoms even on treatment that used to cause a massive herx reaction.
My llmd says I'm in remission and he thinks that my infections were already weaked from treatment and the IV Zosyn and removal of the infected organ gave my body a huge advantage.
I'm well aware that remission doesn't mean I'm cured and that relapse is extremely common. My question is, will I ever be able to get pregnant without passing on congenital Lyme? If I am on treatment during pregnancy will that protect the baby?
I'm not in a hurry to get pregnant right now or anything but I do want to start having children sometime in the next year or two if there's a way to protect the baby from any remaining infection.
My llmd told me that if I stay in remission for at least a year, then get an IGENEX test and another six months later and if both tests are negative, then I should be ok if I take a prophylactic during pregnancy.
But in general doctors don't always have the same opinion on any given issue so I'm not accepting his opinion blindly.
I will definitely go to at least one more llmd before I'd make the decision to have a baby but I want to acquire as much information as I can anyway.
If anyone has any information/experience or knowledge regarding pregnancy after Lyme, I would really appreciate any insights.
-------------------- Infected with Lyme and co-infections March 2006
In remission since September 2011 Posts: 3 | From Sunshine State | Registered: May 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, treatment for the mom can protect the baby from lyme but you'd also want to be sure of the other coinfections.
As you are in remission, that's excellent. Congratulations.
You might add this to your test list as I think it would be much better assurance if you feel the need to test lyme again before conception:
[ 02-09-2012, 12:31 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Do a search for Dr. J's Pregnancy Protocol.
I believe the current plan is treating pregnant mothers with Zith and Omnicef for the duration of the pregnancy.
Dr. J says if this is done there is a 99% change the baby will be uninfected.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- So, you've been in remission since this past Sept. and " . . . still on treatment for Lyme, just to be safe, but not as aggressive as before. . . ."
At the point where you may no longer need to stay on Rx, you might consider certain herbal supplements such as those in Buhner's book "Healing Lyme" -
Many in "transition" seem to find that a very specific herbal protocol (or even just rotation between a few key herbs) can keep them in a steady and strong remission.
[ 02-08-2012, 01:43 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You might want to copy and save this thread for additional options for "transitional" ease and strong remission. I like this interpretation that word: RE-Mission. New start.
ADRENAL SUPPORT, and MITOCHONDRIA support would be key. Scroll down for those links. ---------------------------------
Links to many articles and books by holistic-minded LL doctors of various degrees . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
I posted my notes from Dr. J's talk at recent lyme conference. He says how a pregnant mom with lyme should be treated to prevent transmission of lyme to fetus. Hope this helps you.
If you follow his advice (he is the world-wide expert) you could get pregnant now according to him.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-- In additional to TF's link: --------------
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
If I knew what I know now, and had a chance for a do-over,
I would take the antibiotics during entire pregnancy AND breastfeeding. After that, you could see about getting off.
JMO- I passed to my daughter (had NO idea) and it is sad- she's the light of my life, means the entire world to me, but I wish to God she were healthy.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I don't have much advice for you, but wow, what a story! Amazing.
I did give birth to 3 kids who don't appear to have lyme, though I have never had their blood tested. They are 2, 5, 8 yo, doing great. I have had Lyme for 27 years, though most of that time was remission. I thought I was still in remission during my pregnancies but my Lyme had started acting up again, I just didn't recognize it at the time.
Please do be guarded during your pregnancies, and keep seeing your LLMD -- pregnancy itself may provide the opportunity for relapse. I had no idea of this at the time, but my llmd thinks pregancy was the trigger that brought me out of 17 years of remission. A bulls-eye rash appeared during my first pregancy, out of the blue, hadn't seen anything like that in 17 years...and another bulls-eye during my 3rd pregnancy... Many new Lyme symptoms too, in addition to the old familiar ones.
Still, my kids seem OK, even though I did nothing during my pregnancies to protect them. I really wish I had had a clue! LLMD told me to watch closely for lyme symptoms when they go through puberty.
-- Lyme since 1986, plus Bartonella WB: 8/10 bands present
Posts: 33 | From USA | Registered: Aug 2011
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Well, I disagree with Dr J. In my years with lyme, I've seen plenty of mothers give birth to infected babies while on his protocol. I am one of them. I took my omnicef and zith faithfully twice a day for the entire pregnancy. My son got lyme and co from me.
Now, I had only been 6 months into treatment at the time I concieved and I feel that the longer you have been treated, the better chance of NOT passing it. That being siad, I think it is always a risk.
My husband and I will not be having any more biological children due to Lyme and Co. But, we are planning to adopt.
Posts: 1104 | From N.California | Registered: Jan 2008
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manybites
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posted
I was about to say the same thing.I have had lyme and co before I had my son.I did not knew that.
He was born with lyme and co infections.
I also have my daughter with lyme and coinfections.I told her to never have children but to adopt.
I suffered just sseing my son suffer and you can not even give them the high dosages of anything until they become adult.The dosages my son got for babesia is not strong enough.
I spent and suffered trying to treat him the last 3 years.I live him to death but just knowing he will suffer from coinfection even if he kills lyme is not fair.
Bartonella is even worst than lyme.And I do not beilive you can kill it and very high risk you will pass it to your baby .This is just my sugestion.
Posts: 1379 | From disable | Registered: Aug 2011
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The information that was provided was very helpful, especially the ILADS links to Dr. Jones protocol. I also appreciate the warnings that no matter what, it may still be a risk. That is why I asked on this forum. I knew I'd hear both sides of this issue and that is what I need to make an informed decision.
If there is a chance that I could still pass Lyme onto my baby, I don't want to risk it. My husband and I have discussed surrogacy as an alternative. Again, thank you so much for taking the time to share your information and experiences with me.
-------------------- Infected with Lyme and co-infections March 2006
In remission since September 2011 Posts: 3 | From Sunshine State | Registered: May 2011
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I just had a healthy lymer free baby in august! I did omicef zith and switched to bicillin zith.
Posts: 3905 | From USA | Registered: May 2007
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posted
Thank you LymeFaerie for posting this thread & to everyone that responded. There is a lot of good information here.
As I near remission after approx 2 years of treatment, I'm starting to think about family planning options. Ideally I would love to have my own children but I fear about passing the disease. I'm trying to do all my research now so I can make the best decisions for my family. I really feel for you LymeFaerie. These questions and decisions weigh on my mind everyday. I wish you the best of luck and health.
-K
Posts: 44 | From Midwest | Registered: May 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Hopeful_K.
99% chance of NOT having Lyme by following Dr. J's protocol.
I'd say those are pretty good odds. Fret not.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Thanks bcb1200! Your feedback gives hopeful_K HOPE!!!
Posts: 44 | From Midwest | Registered: May 2010
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I watched the DVD 'Putting Lyme Behind You' One LLMD, who has been treating Lyme since 1988, said
she has had 10 women get pregnant, all were put on antibiotic protocol for pregnancy,
out of the 10, only 1 had a baby with Lyme.
That's 10%.
Just thought I'd share that- and, having children is the best thing that's ever happened to me- You will never regret the children you have, but maybe the ones you never did have. Peace.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
LymeFaerie - what an amazing story - I am in awe of your strength and so happy for your success.
You ask a question that I ask myself every day. I'm fairly certain that I had lyme/babesia when I conceived both of my children. They both have lyme/babesia now. We are all being treated.
Would I have intentionally conceived then if I had known that I was infected? Who knows.
The good news, though, is that this is the "best" possible time to have lyme (I say this sarcastically) since there finally are LLMDs out there who can guide you through the process if you decide to go ahead.
Although we've had major issues with my older daughter (she also has PANDAS and bartonella from her own tick bite), she has still been functional and able to live a "normal" life. My younger daughter had only complained of minor joint pain when we decided to test her as a precaution.
It's a very personal decision, but even adoption and surrogacy are not without their own inherent risks. I can't begin to tell you how many people I know who I suspect have lyme and/or co-infections - and this is something that genetic testing for adoption or surrogacy will NOT test unless you request it.
Posts: 348 | From NJ | Registered: Sep 2011
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