posted
It's been a while since I have been hanging out here, because thank god I have been feeling better. Just as a little background I was ELISA and Western Blot (CDC) positive back in 01-02. My general doctor misdiagnosed my first Lyme symptoms by at least a month (I know that's much better than what many of you have been through). By the time I was treated I had terrible joint pain, excruciatingly painful headaches, and Bells Palsy. I received insufficient amounts of doxycyline, and was having flair ups. I was able to keep my life together and got really lucky when I met a Lymenet forum member on a musicians forum (plexipalace.com). He recommended I ask my doctor for Minocycline which I did in 05 and I now feel 95%. Thank You!
Now the nightmare. My wife and I have been trying for a long time to have a baby and in May we got the good news that she is pregnant. In late June my wife was gardening and noticed a very small tick on her leg. We removed it and sent it to a lab which reported the tick was Lyme free. We told her doctor about the tick and he agreed to check for Lyme during her next HCG and Progesterone blood test. Sadly those results were positive (LYME DISEASE Ab. 1.3 & LYME Ab. , IgM 2.86). Returned to her doctor last Wednesday and I coordinated a phone consultation between him and Dr. J in New Haven. My wife presents with absolutely no Lyme symptoms other than those of a healthy pregnant woman (slight fatigue & nausea). My doctor told me Dr. J said on the call not to treat until the Western Blot results are in, which should be Monday. My wife's doctor ordered the Igenex kit which should also get in this week.
Not to muddy up the water, but my wife has a long history of CFS, seeing a chiropractor for back pain, occasional mood swings and depression... Really makes me question the possibility of partners sharing the disease.
What I don't understand is why not just start treating her immediately as a precaution? Also, does anyone know how serious it is for a pregnant woman to Herx?? If she presents with no symptoms do you think it's possible the Lyme bacteria reached the baby in the embryo and or fetus stage of development, I've read all the horror stories and am very concerned???
Posts: 31 | From NY | Registered: Jul 2005
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posted
This isn't much of a wait, so maybe just chill out until then, if possible. Test results are not entirely reliable, as you probably know by now. Some people have it but come up negative. It may be that having a positive western blot will help reinforce your local doc in treating her. And protect him from the medical board. Possibly that is the thinking at this point.
The CFS thing though, certainly does raise some questions on its own.
Women who are treated thru their pregnancies can produce healthy babies. Not always, but frequently. If you get to where you want some medical lit as backup with the doc and to read yourself, let me know by private message and I will send.
Posts: 8430 | From Not available | Registered: Oct 2000
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
I am starting a lyme group (check General Support). If you and your wife are on long Island come on down and meet with us. First meeting is July 11th at 7:00 PM.
I was infected while pregnant and would be happy to share my experiences with you in person.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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posted
Your wife could have gotten Lyme from the tick that bite her or she could have gotten it some other time in her life. My flu-like illness occured when I was eight and I started experiencing Lyme symptoms 13 years later.
The fact that she was diagnosed with CFS makes me believe that she could have had Lyme the entire time. Everybodies symtoms are different and Lyme can lay dormat for years and reactivate at any time.
Normally something triggers this activation and her increased hormone levels caused by her pregnancy could have done this. I would say that you should find a LLMD so she can start taking antibiotics ASAP.
I know amoxycillin can be used in women who are pregnant and I am sure there are others. You don't want to risk your child having Lyme by not starting treatment and test results take weeks to process so she really shouldt wait that long.
Good luck with everything, LuLu
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
SOunds like she got it from a tick to me!! For every one you see, how many don't you catch???
Magic Acorn- I had NO idea that was a support group- I thought you were having a party!!!! Boy can i be dense, espcially because I come here first thing in am with first cuppa coffee (brain juice*)!!!!
Um, have her go on amoxicillin! I was on it through pregnancy adn it is one of 3 drugs used in pregnancy safe re Lyme- ceftin, IV rocephin, Amoxicillin- you can breastfeed on it too. I have been on 3 years with healthy baby and breastfeeding too- many local women also have done this- no babies with problems!!!
best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Thanks for all the feedback. Just heard back from our general doctor and the results of the Western Blot were negative (0 bands). Now I'm even more confused. A positive Elisa and negative Western Blot? Could it be that the Elisa was false positive?? Her gums were recently bleeding; maybe gum disease triggered a positive Elisa... I suppose we will know for sure when the Igenex screening is performed and those results are in.
Posts: 31 | From NY | Registered: Jul 2005
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
If I were her, I wouldn't wait on the antibiotics until the test results are in.
Why give the little critters more time to get established? Then, you could be looking at years of treatment and a child in real trouble.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Bleeding gums in pregnancy can be normal. It is usually due to the increase in blood volume and progesterone. It usually happens when she will brush or floss. Dont worry about that too much.
I am not a doctor just a woman who has 2 children.
Posts: 3905 | From USA | Registered: May 2007
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posted
I just got the Western Blot results faxed to me. The doctor told me no bands were positive. Everything says Nonreactive or Negative except for : LYME DISEASE 41 KD IGG Reactive A. What does that mean?
Posts: 31 | From NY | Registered: Jul 2005
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posted
41 is a non-Lyme specific band. Was that an IGeneX test?
I had Lyme through 5 pregnacies and didn't know it. I did become symptomatic during the pregnancies, but we attributed it to the pregnancy itself (no joint pain at the time).
I have one daughter who tested slightly positive and has recently started treatment. She has minimal symptoms and is feeling a little better so far (it's been a couple weeks).
Take it one step at a time ... both your wife and your child will be okay. I look at my kids and think that I'm glad I didn't know I had Lyme because I might not have had all of them.
I'd rather have them and have them have the possibility of Lyme than not have them at all!!! Besides, they've all been bitten by ticks themselves ... so the kids can get it anyway, just like we did.
It's going to be okay. If she has it, you caught it early. I believe she can take amoxy while she's pregnant, but that will be up to her doctor.
Have her get a water pik, it will help with the gums.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
We finally got the Igenex results today, and it's not good. IGM: 18++, 28++, 30++, 31+, 34 IND, 39+, 41+, 58+ (CDC Positive). IGG: 18+, 31 IND, 41 ++. She just started 875mg of Amoxicillin 2x per day as per Dr. J. The blood for the Igenex tests was drawn on July 9th and fortunately she started with 500mg 2x per day of Amoxicillin on the 10th as a precaution. She had no herxing with the 500mg 2x per day....
If this is a recent infection, than the exposure without antibiotics is low. A tick was found on her June 9th and Amoxicillin started on July 10th. On the other hand, given my wife's medical history it is possible she has been dealing with this for many years.
The only thing we can hope for is the same success the mothers who post here have had taking antibiotics for the entire pregnancy and breast feeding.
I would like to send out a heart felt thanks to the entire lymenet forum community. I would have never found out about Dr.J, Igenex and dealing with Lyme and pregnancy...
Posts: 31 | From NY | Registered: Jul 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am sorry to hear about your wife and Lyme disease.
That was a pretty positive Western Blot.
So glad you did an Igenex test....think what could have been missed.
Congratulations on the pregnancy.
I believe my four year old son was infected by me....and possibly my five year old too.
Glad your wife will get treated during her pregnancy.
Sending you both (and your bundle of joy) positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hello,
Here are some medical references for your research:
posted
Dr.J recommended that my wife see Dr.H in Hyde Park to treat her current infection more thoroughly, including testing for all co-infections. He also thought I should be treated for my minor chronic problems and to also be tested for co-infections.
I was very impressed with Dr.H's practice and JF, whom our appointment was with. After hearing my wife's story and reviewing her medical documents JF felt it is possible that she has been infected for twenty years. He is trying to petition our insurance through her OB/GYN for IV Rocephin treatment. Have any of you heard of pregnant women treating Lyme with IV? She is feeling the Lyme effects in a major way now that the amoxicillin dosage has been bumped up. She is ramping up to 1500 mg, three times a day of the amoxicillin and will then start azithromycin.
I told JF about my chronic Lyme symptoms: moving joint pain, headaches, occasional night sweats, and floaters. He prescribed omnicef, plaquenil, and azithromycin. I'm on the omnicef and plaquenil now and seem to be tolerating it with the exception of one minor herx. I'm down to the occasional floater and the joint pain in my left hand and right ankle has stopped. This weekend I add the azithromycin.
Still waiting for our co-infections results...
I really wish I spent the money when I was first diagnosed with Lyme on a competent LLMD. If your on the fence and can somehow swing it financially go for it.
Posts: 31 | From NY | Registered: Jul 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I just want to send you guys some encouragement.
I have two kids who were born while I had had undiagnosed lyme for ten or twenty years. They are great kids!
My little one may have had some lyme problems, but they cleared up after she was treated extensively with antibiotics for ear infections as a baby.
In any case, you guys are the lucky ones. Thousands of people are infected by lyme and they never know it and never will. They have to stuggle throughout life and never understand what hit them.
If your kids have any trouble, you'll know what the problem is and you'll know what to do.
You also know what to do to relieve the symptms your wife is experiencing, whether you do it now or later. You are going to be okay!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I also was infected prior to my three pregnancies. That was back in the 70's and early 80's and I have had Lyme since I was a child, but didn't know it.
Now, as adults I believe that one has had Lyme since infancy, for sure. He is now dx'd with Bipolar Disorder. When he gets off COBRA and into a new job I will push for him to see me LLMD.
My youngest has shown minor symptoms since childhood, but we just thought they were attention seeking behaviors.
When she had conjunctivitis multiple times a couple of years ago, about the time I was finally dx'd with Lyme I began to put it all together.
My oldest seem to have missed it, so far. I only breast fed him for a few days and stopped due to problems and a non-supportive doctor.
He is a multi-sport athlete (triathlons, marathons, etc.), has just completed his second Master's degree in an intensive program while teaching school the entire time, and has not shown signs yet.
I'm hoping it may have missed him.
I wouldn't trade my kids for the world. If I unknowingly infected them, of course I am sorry about that, but I had no clue I was ill.
I thought the way I felt was how everyone felt, until I got so bad I couldn't teach any more. That was in 2001.
I'm glad to hear you are both getting treatment now. I wish you both the best. It sounds like you are doing what you need to do to protect your unborn child.
Best wishes to you both, and hang in there on the tough days. It does get better!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I just wanted to say you are both in GREAT hands all the way around. We all know Dr. J is the BEST for the kiddos!
I see Dr. H (L is my PA), and I have gone from 15% to 80% in 7 months!!!! Dr. H is my hero! So are my hubby and kids who have had to deal with me, my illness, and all the household duties while I've been sick.
You'll both get better. Your baby will be fine. I have six kids and have had Lyme for 35 years. Only one of them has it (so far ... the other seem healthy), and she has a minor case of it. She's being seen by Dr. H and will most likely only need 4 months of abx, then we'll switch to herbs. She has had ticks on her own, so it's not a proven, congenital case.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks for all the replies and of course the positive messages. Were on the right track and that's really only because of this excellent community.
Kind of curious to find out your thoughts regarding a pregnant woman taking IV Rocephin. Dr.J and Dr.H are both on board. In fact JF petitioned our insurance company through my wife's OB/GYN and they have agreed to pay for it. My wife's biggest concern is the danger of a blood clot with the picc line....
Posts: 31 | From NY | Registered: Jul 2005
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tailz
Unregistered
posted
My LLMD says that Lyme and coinfections are indeed sexually transmittable, and I believe him.
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posted
I go to a respected LLMD who said "PROBABLY not" when I asked if Lyme is sexually transmitted.
Yep, it means they just don't know!
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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posted
Just wanted to let everyone know that our son was born February 16th. Mother and child are home and doing very well with no complications. Most importantly the entire MDL maternal tick born disease kit came back negative. That includes PCR testing of breast milk, cord blood, placenta, fore skin remnant, amniotic fluid as well as a few other tissue specimens I can't remember. It's a credit to this community for helping us get in touch with Dr.H and Dr.J and of course they're expert diagnosis and treatment. We're not out of the woods and we'll need to keep an eye out for any issues but the test results are extremely encouraging. Lastly, I hope our story will be a positive one for people exposed to Lyme and interested in having a family or already pregnant with a diagnosis. The best advice is to get a quality LLMD and treat for the entire pregnancy (my wife was on IV Rocephin for two months and Omnicef the rest of her pregnancy and beyond) as well as the post-birth breast feeding phase. Good Luck!
Posts: 31 | From NY | Registered: Jul 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh my... this is fantastic news!
Congratulations to you all!
I am so happy to hear this and love that you came back to let us know how you are doing! Thank you!!!
In your new "busier" world... if you get time.. all updates will be appreciated!
Now go hug that little one for all of us.. and your dear wife too!
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Awesome news! Congratulations! I'm so glad you two took matters into your own hands and ignored the obviously crappy initial western blot in favor of a decent test! So MANY are stopped right there and never go further in search of an answer.
Enjoy that baby!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Congrats on the new baby!
Glad to hear mother and child are doing so well.
Keep us posted.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Have not been doing a good job keeping this thread updated. Hope this helps someone!
Well, it looks like the Lyme drama is back:( Wife has back slid and has a positive WB for a current infection. She is once again being treated by JF at Dr.H. Our son seems to be OK but a couple of things have us concerned. This past summer he complained about knee pain three times and he has dark bags under his eyes even though he gets a good amount of sleep. His verbal skills are higher than any of the kids in his pre-school class, yet he has a hard time with puzzles... He seems to also be a little emotional. Tough to use those as examples as all kids can display those behaviors. But there is some troubling news regarding igenex results. Were leaving what comes next up to Dr. J. Here are the results from 2010 and 2011:
2010 IGM: 41+, 45+ (Negative test result) 2010 IGG: 39 IND, 41 +++, 45+, 58+, 66+ (Negative test result) 2011 IGM: 39 IND, 41 +++ (Negative test result) 2011 IGG: 30+, 31 IND, 39++, 41++++, 58+, 66+ (POSITIVE test result)
Posts: 31 | From NY | Registered: Jul 2005
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posted
Thanks for the update. I'm sorry to hear both your wife and son are dealing with this.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
So sorry about your family.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
Thank you for the kind words. I'm glad were at least aware of the situation. Now we have to be vigilant.
Posts: 31 | From NY | Registered: Jul 2005
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