posted
Would like to know other's experiences of being diagnosed with Lyme and then getting pregnant? I was diagnosed with Lyme Summer 2012 and was not getting better on 3 months antibiotics. In fact no change in symptoms at all. Until in November, we found out I was pregnant and soon after all my symptoms vanished. I was back to almost 100% for the first time in a year! Last month, we lost the baby at 12-14wks and I'm wondering if others have had this kind of experience? My symptoms are now coming back slowly but no where near as bad. Is this normal for Lyme? Thanks
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Kudzuslipper
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posted
Islander, I am so sorry for your loss. I have no experience, but know hormones are a powerful thing.
Posts: 1728 | From USA | Registered: May 2011
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I wasn't aware that I had lyme but I was having migraines and some other symptoms regularly and when I got pregnant they seemed to go away. I believe I had lyme dating back to high school days (though I have no way to confirm that). Only once I was bit again and developed an EM rash did severe symptoms crash down on me.
Not sure if you are on to something here. I'm curious about other experiences.
Posts: 274 | From United States | Registered: Feb 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Some people do seem to have less symptoms during pregnancy. The antibiotics you should take during that time are different. The loss of the baby could certainly be related to lyme.
Posts: 2888 | From USA | Registered: Mar 2004
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I don't know about lyme, but a lot of autoimmune problems go into remission when you're pregnant. The immune system changes with pregnancy.
I remember hearing a doc talk about it once. Basically, the body's immune system would view a fetus as foreign invader if it didn't change.
I also had a friend with fibromyalgia and her symptoms went away while pregnant.
Posts: 2839 | From California | Registered: Jul 2012
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I have heard about this with other illnesses as well. Before I knew I had lyme I was diagnosed with CFS and did see some people on the CFS groups mention that same thing. They said their symptoms went away while pregnant but then came back after the baby was born.
My cousins wife had the same experience with her rheumatoid arthritis. With her first child she was in total remission with her arthritis but then it all came back after the baby was born. Then unfortunately she didn't have the same experience with her second child. In fact with her second child she felt much worse during pregnancy than usual. She had a tough time until the baby was born.
So this definitely can happen. Who knows why. As someone else said...hormones can be very powerful.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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I have had first hand experience with this. I had been sick prior to my pregnancy with my daughter for a few years. Bouncing from doctor to doctor and being handing the same old "depression" or "it's in your head excuse". Fast forward to 2 1/2 years later, I was finally diagnosed with lyme last summer.
While I was pregnant with my daughter (whom was a complete surprise) I had no idea I had lyme. My symptoms pretty much vanished. I started to feel good again other than some pregnancy related aversions. That lasted through the end of my pregnancy when my cardiac symptoms returned, but nothing else. I was finally rid of my body aches and pains, head rushes, brain fog, panic attacks and all other symtoms.
About 6 weeks after my daughers birth, I finally started my menses and with that, my symptoms began their return, all of them. And I slowly slid downhill from there on out.
Now i'm being treated with bactrim and doxy and hoping to see some improvement soon.
Hormones can be wicked. I'll be undergoing a hormone study because I have PCOS and now some female problems to accompany all the other pleasantries this disease brings.
I do hope you are doing well and can find some help here and peace. And I would certainly go for hormone testing and likely thyroid too. That wacky little gland has a whole lot to do with our hormones.
Wishing you the best!
Posts: 132 | From Central New Jersey | Registered: Feb 2012
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YinYang - I'll be sure to keep updating, maybe I am on to something, but I think everybody's body is different right?! So who knows!
Judie - I was also originally diagnosed with CFS/Fibromyalgia and have heard more about that going into remission during pregnancy and sometimes curing it completely. I heard the same theory re the immune system etc.
Pam 08- Like I said to Judie, I too was originally diagnosed with CFS like you. Are you now on antibiotic treatment? And for how long? Before pregnancy I was on doxy for 3 months and noticed no change, herx or improvement. It makes me question whether it's really Lyme, although my iGenix came back one of the most positive results the lab Dr had ever seen!!
Jessig627 - Thanks for sharing! How is your daughter, did you have her tested for Lyme too? How old is she now? My misscarriage was 5 weeks ago and my menses are back and have brought symptoms back with them too. I'm definitely going to see a hormone specialist and get a full panel of tests done as I also have PCOS! Maybe there's a link?! I had my Thyroid tested a few times by different Drs TSH, T3 & T4 and it came back normal, so who knows. I'll keep you updated. Are you noticing any improvements on the doxy yet? That's what I'm back on again. What is Bactrim?
All the best everyone, so helpful to know we're not alone!!
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
"My cousins wife had the same experience with her rheumatoid arthritis. With her first child she was in total remission with her arthritis but then it all came back after the baby was born. Then "
this happened to a freind of mine also...it was a long time ago. she never had a second child and the RA txed with steroids disabled her
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I don't know if this matters, but maybe if someone reads this down the line:
I did not have remission during my last pregnancy. I was chronically infected with Lyme and Bart, had no idea, no treatment.
I got horrible migraines- for 6 months straight every day, rarely, rarely having them not pregnant. Extremely fatigued, etc.
I thought it was all due to my advanced age. After birth, anxiety hit me like a bus.
Did not find Lyme until 4 years later.
-------------------- 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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I had lyme & co's back in 1998 and was never dx. When I got pregnant the first time all my symptoms went away. I went on to have 3 pregnancies and 11 years in "remission".
My dr's think the only reason my lyme came back was due to another illness triggering it. It's very similar to an autoimmune disease in that way.
I also had a miscarriage and know for a fact it didn't have anything to do with lyme (there was a chromosomal disorder).
If you had a strongly positive iGenex test, I would feel pretty positive that it's lyme & co's. Thankfully you can take amox while pregnant if necessary. Best of luck to you
posted
FamilyFive, thanks so much, that's really helpful to hear. The more I read the more I'm convinced that I really am dealing with Lyme. It was the stress of getting married and planning a wedding that triggered my symptoms (on our honeymoon!) but I think I was bitten about 18months earlier. Hope you're doing well now? Do your kids have any symptoms?
Suprise - Wow! Everyone's journey is so different! I hope you're doing ok now, getting a dx is half the battle with Lyme I'm learning! If you had symtoms and believe you had lyme while pregnant, do your kids have symptoms?
I'm interested to know other's experience and thoughts on whether Lyme passes to a baby during pregnancy... we don't know whether we should try to conceieve again while I still have Lyme?
Thanks everyone, love and all the best to you all!
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
It's a sensitive subject, the passing of Lyme while pregnant and/or breast feeding.
I am really sorry for your loss- God bless, it must have been very difficult.
My 2 younger children, who I had Lyme with while pregnant, and no treatments, no idea I was infected:
1 child is healthy, completely neurotypical- I did not breast feed her for personal reasons at the time.
The other child, who I did breast feed, tested positive for Lyme, we went through PANS (auto immune disorder) and high functioning autism.
It is very serious, the mother having Lyme and co-infections, untreated or not treated, while pregnant or breast feeding.
-------------------- 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
Suprise, thanks so much for sharing your experience and how your children are doing. Loosing our baby was so difficult and it sounds like you have struggles of your own. I guess breastfeeding/pregnancy with Lyme gets complicated, and there's really no testing been done so far as I can find to know what really goes on from a medical perspective. That's why it's so good to hear personal experiences. Thanks again Anyone else??
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
islander, according to Dr. Charles Ray Jones, foremost pediatric lyme specialist in the world, lyme passes to babies in the womb, no doubt about it. He has said this for years. I don't think it is in dispute among lyme doctors.
I listened to a talk he gave about a year ago at the 2011 Lyme Conference in Toronto on the subject. Here are my notes for you to review. He tells the antibiotics the pregnant mother must take to prevent lyme from passing to the unborn child.
2011 ILADS Conference, Toronto, Canada
Pregnancy & Tick Borne Diseases: Gestational Lyme
Dr. Charles Ray Jones 10/28/11
Impulsivity is an earmark of children born with lyme. Lyme is a multi-system disorder. It can wax and wane and change. It likes collagen (valves), nerves, and joints; it is almost always tick borne
HIV, CMV, any infection in mother can be transmitted to the fetus.
If lyme is transmitted, you will see severe hypotonia (floppy baby), child will be irritable, tire easily, sensitive to light, noise, skin. The hypotonia will cause trouble sucking due to the lips being floppy. This can improve as time goes on. 30% of these children will have developmental delays.
Tissue PCR biopsy is more likely to be positive rather than a test of bodily fluids (blood, urine, spinal fluid, etc.). Test placenta and foreskin remnant.
Some of these children are classified as autism spectrum early on due to their failure to progress. These children do NOT experience regression as is often seen in autistic children. If antibiotics help them, it points to lyme as the true diagnosis.
He described 2 patients. One little boy ran around his office. He had never spoken. It was doubtful that he could understand what others said. But Dr. J. noticed that the boy made good eye contact with him, which autistic children will not do. He took his face in his hands and said to the boy, �I am going to unlock your brain.� The next time the child returned, he ran to Dr. J., put Dr. J�s hands on his face and said, �Thank you for unlocking my brain.�
The other boy had committed a long list of crimes, the most serious of which was attempted murder of his mother, and was about to be removed from his home due to his crimes. The boy announced that nobody was taking any blood from him. Dr. J. gave him a choice--either give blood or have a wrestling hold put on him. He put the hold on the child lightly and the child asked for him to stop. Then, he jumped into Dr. J�s lap and hugged him (while Dr. J. patted him down for contraband) and cried profusely for about 2 minutes. When asked why he was crying like this, the little criminal said, �Nobody has ever given me a choice before!� This boy was diagnosed with lyme thanks to the persistence of his mother.
Treating the pregnant mother: There is less than 1% transmission of the illness if the mother is treated with 2 antibiotics during the pregnancy; 25% rate of transmission if she is treated with just one antibiotic; and 50% rate of transmission if she is not given antibiotics at all.
It doesn�t matter what trimester the mother becomes infected. These are the statistics.
A baby born with babesiosis is in really bad shape. He told of one with heart and numerous other serious problems who was given numerous transfusions at birth, plus atovaquone and azithromycin and is now well. It took 1 week to see great improvement.
Some medications he suggests for the pregnant mother include 1,000 mg amoxicillin every 8 hours for months, also mentioned IM (intramuscular injections), ceftriaxone (? not sure of this--something that started with �ceft� but not ceftin), etc.
The mother can only breast feed the child if she is on antibiotics. Then, yes, it is fine to breastfeed.
He mentioned that a lab known as Advanced Laboratories can now culture for the lyme bacteria. Western Blots test only for exposure, so the Advanced Lab test is a much better test.
He said that a father can infect a mother. In in vitro fertilization, a father infected the embryo, but it was not part of a study, just anecdotal.
He quoted Dr. H., �If the mind doesn�t know, the eyes don�t see� to explain how lyme can be missed in these children so that they are misdiagnosed.
One month of amoxi should be given to the mother if she is bitten while breastfeeding.
To treat bartonella in children, give them zith and/or Bactrim, ciprofloxacin in an older child.
Antineuronal antibodies can be found in infected children. If they are found, treat the child with antibiotics. The child can have strep antibodies also. He uses various meds including IV Gamma globulin, if needed.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, thanks for these notes, interesting stuff. Back while I was still pregnant we listened to a lecture from another Dr as part of the 2012 ILADS Conference in Boston. It was great and she offered some helpful information for anyone else thinking through these issues I think you can still buy the session on the ILADS website.
-------------------- - Posts: 19 | From BC | Registered: Feb 2013
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posted
i felt great while pregnant also, didn't know I had Lyme then. I now know why, and I know the immune system switches while your pregnant to fight more bacterial not viral infections. It's pretty amazing how our bodies work.
Posts: 908 | From Albany | Registered: Nov 2008
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posted
I am so sorry for your loss. We lost a baby in november when I was only 7 weeks pregnant, and at the time I naively believed Lyme was gone after 3weeks of herbal treatment by a naturopath (after 14 months of antibiox were not effective). I now wonder if Lyme had something to do with it, but I know there is no way to tell. I do not know if my 3 kids have it; my youngest is kind of hyperactive and has asthma, but naturopath said she did not have it. I do not trust her diagnosis anymore b/c she said mine was gone. We also have mold issues in our house too I am pretty sure, so that will make asthma and other issues too. I did breast feed all of them, not knowing at the time I had Lyme, but it is good to know there is a protocol to help keep from passing it on.
I wld like to be pregnant and am having trouble figuring out who to see/what to do. I love being pregnant and feel great also besides the nausea, so that is interesting that Lyme symptoms "recede" then.
Posts: 8 | From Ohio | Registered: Feb 2013
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posted
Bekahnerk, sorry for your loss too. I think it's important to know that Lyme absolutely can be passed along through pregnancy. The more I learn the more I'm sure in my decision that I'm not going to try to get pregnant until we can hopefully get rid of this disease in my body. I first got symptoms of Lyme on honeymoon and have had them for over a year now, so we're young and think it's smart all round for us to wait a while. I hope you can get to the bottom of your health problems and find a dr who can help. I also was on a herbal protocol for Lyme for about 4-5 months before abx but it didn't do anything for me, but then neither are the abx right now! I'm hoping to see an LLMD soon! All the best
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