posted
Here's a link on congenital Lyme. There are more. Just look for the little word "search" up above and click on it. Then type in congenital lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Number #1 get a NEW doc,preferably a LLMD to see you since a positive test is positive.
There are a couple of them in your state,area.
Then have your baby looked at also.
YES, congenial lyme exists.
Your motherly instincts are GOOD,,,keep it up mom!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yes, it does exist.
I'm not sure if it is always passed, but it can be passed from mother to child.
There is a very informative "special edition" of a Lyme magazine that is dedicated to children and Lyme, and it has articles by well-known Lyme experts.
It gives symptoms to look for in children, treatment, etc.
I recently ordered it, and I think it cost $10 including shipping, but it is a donation. It was well worth the $10 in my opinion, to have that info.
I am not affiliated with this organization, so I am not "selling this," I just have Lyme and was recently pregnant so my Lyme doctor suggested I order it. The pregnancy ended in miscarriage however, so I cannot give you advice based on experience.
You'll see a row of magazines on the bottom, and the third one from the left has a blue cover and says "Children" on it. Click on it, then click "Order Issue" at the bottom of the page.
It is called "Lyme Times Children's Treatment Issue #42."
Treating early is definitely your best bet. You would want to treat before the age of 5 I believe. Personally, I would treat as soon as I could if my child had Lyme. Children who are treated young respond much better to treatment than adults, in general.
So your child will probably not suffer as much as us adults do with trying to treat this disease if you treat it early.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Holly, all three of my children have it. I didn't know I had Lyme until after they were a few years old.
I can't say I noticed symptoms when they were babies. My Ped said I couldn't pass it on to them.
We are now in the third month of their trtmnt and it is doing wonders. Find an LLMD.
Posts: 262 | From ohio | Registered: Jul 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Unfortunately, from what I understand the answer is yes.
Have you watched Under Our Skin yet? There is quite a bit of relevant information concerning this subject in this documentary.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
YES, it can be passed. There is irrefutable proof that it can be passed despite what the IDSA states. Not only can lyme be passed, but other infections as well.
Take this CDC bulletin issued in 1985 to your doctor. Aside from all the BS in the bulletin, this is what they say. "Transplacental transmission of B. burgdorferi has been documented in a pregnant woman with Lyme disease who did not receive antimicrobial therapy." http://tinyurl.com/rbrz2n
In addtion, there are many autopsy reports of newborns with lyme that prove beyond a doubt that it can be passed in pregnancy. Another case of absolute proof and yet the IDSA refutes it. AND, they get away with it. INSANITY!!!
You can't really blame your pediatrician who is not a lyme specialist and is listening to the IDSA who are supposed to be "THE" top notch Infectious Disease Society (snort!!).
Babesiosis and a Bartonella like organism (BLO) are two common co-infections that are often seen in lyme infected patients that can also be transmitted to a fetus.
From ILADS: "As in Lyme Disease and Babesiosis, Bartonella may be transmitted to the fetus in the infected pregnant patient." http://tinyurl.com/wrres
There have been no long term studies that follow children who were born to Bb infected mothers to determine the state of their health as they grow up and reach adulthood. There are a few studies that focus on one specific problem, for example congenital heart defects. So, if a child does not have a congenital heart defect then no problem.
The other issue is that we don't know how congenital lyme disease will show up on tests. Is it similar to a person who was bitten by a tick or is it even harder to detect antibodies or other signs of infection?
It could be that a child who acquired bb in the womb does not make antibodies because their immune system does not see it as foriegn invader. So many questions, so few answers. The CDC and IDSA don't seem to be very concerned at all and have no plans to further study fetal transmission issues to my knowledge. Even if they do, it won't be the type of study that would track all health issues of children born to chronic lyme disease patients because they don't beleive in chronic lyme.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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tickbattler
Unregistered
posted
Yes, it does exist. There are many on here who think they passed it on. I may have passed it to my three children, but they also had tick bites so I will never know. They had a lot of ear infections, had colds lasting 2 weeks, and seemed to always get sick. My boys were slow to start talking. Most of their symptoms came around age 2 to 3, so I think they were most likely infected by the ticks.
I would research this more and even consider going to see Dr. J in CT. (That's who my kids see.) The wait is about 6 months to get in, so I would try to find someone local sooner for an evaluation. That LLMD can even consult with Dr. J if needed.
Dr. J told me that kids who are born with lyme often have poor muscle tone and are slow to reach developmental milestones. But there can be many ohter symptoms as well. I'm sure others will respond.
I know it is heartbreaking, but if your baby does have lyme, with antibiotic treatment she can be cured. My kids are all doing better with treatment.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My daughter was born with low muscle tone. Everything else has been fine. No one has known the cause. She was behind in all physical developmental milestones by a year or so. She's steadily progressing though.
My wife is in absolute denial about the possibility and won't listen. Therefore, I can't worry anymore.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
thanks guys for posting info, links ...we are still trying to learn more for our kids as well.
LLMD believes in congenital and sexual. i was first dx, then hubby + this feb or so?? , then his mom got tested and +. all of us with lyme, RMSF, and bart. me with babs clinically dx only...and starting to wonder if that was correct?? anyway, now on bart tx and making headway.
i truly think my hubby is case of congenital transmission from HIS mom, and from him to me.
his moms side has had lots of health issues esp. his grandfather who died young- kept having clots then would loose part of limb , piece by piece until double full amputation. then had one go to brain. brothers/uncles with vascular prob.
hubbys grandpa was american indian (decendant of tribal chief)- recent studies show increased incidence of RMSF in indians- low reporting due to not using western med. system.
anyway, great info- helps me too. we are worried about our oldest esp., the other 2 (ages 8,3) do not have symptoms.
trying to learn if the antibiotic approach is best, or go with natropathic/homeopathic first and then see about use of antibiotics if need to....VERY hard to know what is the right thing to do, and dont want them to go through the pain i have. feedback appreciated
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
I have been talking to her b/c we live in the same area -- I will make sure your very informative comments did not scare her away!
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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posted
Oh no.....not scared away. Just busy with my three girls.
Of all things, I had to take poop samples to the Dr. office for my kids because my 5 month old had worms in her diaper. Plus she has had periods of vomiting and diarrhea over the last couple weeks.
Here are the things going on with the baby:
Food allergies/sensitivities (gluten, dairy, strawberries, tomatoes, bananas so far). I am breastfeeding and she reacts when I eat those things.
Latex allergy.
Periods of vomiting and diarrhea.
Worms/parasite (where in the world does a 5 month old get that?)
Other than that she is a very happy healthy baby. Her muscle tone is great and she is growing and developing perfectly.
Maybe I am just a worried mom as I know lots of babies have allergies but it is in the back of my mind that she contracted something from me.
Thanks for all the replies and help. it is great to have a place to turn for support.
Posts: 94 | From Kansas City Area | Registered: Jun 2009
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I don't know for sure if I DO have Lyme or not. I did test positive 2 years ago on IGM (2 out of 3 bands reactive) and negative on IGG (2 out of 10 bands reactive).
I was told I DIDN'T have it at that time by an ID Dr. Was dx with Rheumatic Fever.
Was also dx with Rheumatic Fever by Rheumatologist.
My symptoms have returned 5 times in the last 2 years after ABX each time.
ID doctor was surprised my symptoms kept coming back. Told me I must have a deficiency in my immune system.
I have a lot of joint pain and fatigue right now along with other symptoms and still am unsure of the real cause.
I see a new ID Dr. (not LLMD) on Monday so curious to see his take and the situation.
My baby has a LOT of food allergies, has been vomiting and has had diarrhea.
I saw worms in her diaper last week and she is now being tested for parasites. (she is ONLY 5 months old!!!)
I am so confused right now and mentally exhausted. :-(
Posts: 94 | From Kansas City Area | Registered: Jun 2009
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posted
YES, my LLMD says yes and wants me to test my three kids. I just got diagnosed this week but have been sick 19 years.
My oldest child is 12 and has had symptoms from birth. Enough that we all know something is wrong but no Dr has helped. Will test her next month.
She has always had pain and GI issues. She also sleeps a lot. As a baby, she took two 3 hour naps a day and then would sleep through the night. Has bursts of intense emotion (normal at 12, not so much at 5, 6, 7...) Gets very sick in the heat. Doesn't tolerate exercise well...
My boys both have ADHD and were that way from birth. They have never slept well. Other than that they seem much healthier than my oldest. All three have struggled in school. Dr wants them all tested.
I don't know about sexual transmission but I suspect it. I would like my husband tested at some point too.
I wish you much luck. It is hard to know something is wrong with your baby but not have help for it.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Maybe the parasites are causing the symptoms for your baby? Your baby could get parasites from cats or dogs or possibly from playing outside where animals have deficated.
Also from being in contact with a child or adult who is infected. Your whole family probably needs testing and possibly treatment for parasites. Parasite testing is poor so probably safer to just treat everyone.
A good example of how bad parasite testing can be - we thought my dog had parasites. Took poop to the vet repeatedly for testing. No parasites. We had just walked in the door from the vet after being told no parasites when our dog vomited a huge pile of writhing worms on the carpet. Disgusting!!! My understanding is that testing is even worse for humans.
Which bands on your IgM were positive? Where did you have the test done? Lyme is a clinical diagnosis. I would not even bother with an ID doctor for lyme disease. They follow the IDSA guidelines. You need an LLMD for a proper evaluation. You have no time to waste given that you are symptomatic.
Read the book "Cure Unknown", written by a well respected Science Journalist. It details some of the history and science of Lyme disease. Very easy to read and will help you understand the issues (political, diagnostic, treatment) with Lyme disease. It's nothing to fool around with.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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My baby is only 5 months old so she is not playing outside. We also have no pets at all.
My other two girls are usually very good about washing and sanitizing before touching the baby but I know they could have still passed something to her.
I did test positive for a parasite over a year ago but wasn't treated for it.
My oldest has had gut issues since she was a baby so she may have it too. I did send off tests for all three kids so we will see what the tests show.
I am going to be retested as well.
This is what my WB showed 2 years ago from LabCorp:
-----IGM-----
23 KD REACTIVE
39 KD NON-REACTIVE
41 KD REACTIVE
B.BURGDOR. AB IGM WB POSITIVE
------IGG-------
18 REACTIVE
23 NON-REACITVE
28 NON-REACITVE
30 NON-REACITVE
39 NON-REACITVE
41 REACTIVE
45 NON-REACITVE
45 NON-REACITVE
58 NON-REACITVE
66 NON-REACITVE
93 NON-REACITVE
B.BURGDOR. AB IGG WB NEGATIVE
I was told I didn't have Lyme and was DX with Rheumatic Fever as a result of chronic Strep infection.
I was uneducated about Lyme at the time and believed what the Dr. told me. Now I know more and am exploring Lyme as a cause to my symptoms.
Posts: 94 | From Kansas City Area | Registered: Jun 2009
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posted
Well, the baby's parasite test came back negative. Doesn't make any sense.
Posts: 94 | From Kansas City Area | Registered: Jun 2009
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posted
My mom has Lyme and believes she has since she was little. I have Lyme and so does my brother. So do both my sons. I would say it does exist!
Trust your instints and be an advocate for your child. It took me a long time to find someone to believe me and test them. But I never gave up.
(HUGS) Amy
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
My kids have congenital lyme. The older one has been sick (swollen lymph nodes, sensory integration disorder and more) for his entire life. Oh, and asthma.
My son Ezra died at 20 weeks gestation. I had no clue.
My son who is 5 was hospitalized with "suspected catch scratch fever" when he was two. They never tested though, because IV antibiotics "turned it around".
My kids are positive for lyme and bartonella, and I have a clincal diagnosis.
The younger you can get help, the better. If we would have treated when the little guy was 3, he would be on a road to recovery instead of seriously immune compromised.
Dr. C is Mo is deemed to be excellent with children. We see a doc here who works with kids with autism with biological causes (hence lyme). We are lucky.
I wish you well. Call Dr. C. and get that little baby in! Great you aren't so far away from him.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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quote:Originally posted by jentytib: So you DO have Lyme?
Now my youngest complains his legs hurt. How do I know if it is Lyme, growing pains or something else. Ya know?
There is NO such thing as "growing pains". That is a lie doctors tell you when they don't know what they are doing.
I was always in severe pain from my joints ever since I can remember. Nothing but pain. I did not complain much cause I though it was normal.
This is something you need to address right away. I spent 17 years in severe pain, no doctors listening to me, and believing it was 'growing pains'. Now, despite going through treatment and feeling better, becoming healthier, the pain in my legs will not go away. Most days I have trouble walking, and its just from the pain, nothing mechanically wrong with the joint. I am unable to work.
Get him checked! Joint pain is never something to mess around with.
Your baby has a lot of the symptoms of parasites. Call the people at humaworm and ask them if they have any idea how to treat your baby or know of someone who does.
They are very nice there and very informative. 662 345-0319 I think their hours are between 8 and 3pm Missouri time. BELIEVE WHAT YOU ARE SEEING.
Lab tests for parasites are very unreliable as stated by some e-mails I received from Lymedocs.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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My mom had "growing pains" since she was like 4 yrs old! Now we all have Lyme! Go figure...
My sons pediatrican likes that word too. I took him in for rib pain and that is what he said.
Whatever! I don't buy it...
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
Oh yeah. . the docs told my son his seriously enlarged lymph nodes were NORMAL and his pains in his leg were just growing pains.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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julielynne4
Unregistered
posted
I haven't read any of the responses to this post - but I wanted to answer you because I have had lyme for 25 years (I am 36) and I just finally got diagnosed this past fall.
I have four children, all of whom have recently tested positive for Lyme. They all got it from me. I believe it can be transferred via the placenta, as well as breast milk.
My children all have had numerous symptoms since birth. Don't listen to your doctor. You need a Lyme Literate Medical Doctor. Most mainstream doctors will say there is no way your child could have it. They are SOOOOO wrong.
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I had my first child born healthy, and I was healthy at the time. AS I became more sick, I had my second child who has been plagued her entire life with anxiety, nighmares, lots of neuro stuff, ....then was bitten by a tick in her childhood ......I'm sure she was born with lyme becuase as a baby she had so much terror..
Then child number three, still no lyme diagnosis but was just diagnosed with FMS and had to leave my job. Did not plan that pregnancy...but SURPRISE, I was pregnant.
Four months into that pregnancy, I was told I had no amniotic fluid, and the baby's kidneys didn't work. I was told she would die. I carried her another three months and then went into labor. She died in delivery.
Years later after my lyme diagnosis, I was looking op fetal implications in mothers with lyme, and found this kidney defect my stillborn daughter had. Got goosebumps all over and cried.
Fourth child born with no ostensible problems. But she was infected in Connecticut when her daddy let her jump in the raked leaves. Never saw a tick on her, but two weeks later,,
Two weeks later she couldn't walk or move her mouth, raging fever, she was only 3, and she told me her feet burned and pointed to her knuckles and told me they hurt...she had a sore throat...symptoms of lyme galore, and the doctor would only diagnose her with ear infection!!!
I couldn't get more antibiotics for her, and one and a half years later she would wake up in the morning to tell me she couldn't feel the bottom half of her body.
We ran to Dr. Jones and stayed with him until we moved away from Connecticut, down to Alabama.
I'm rambling....so sorry.
Yes, lyme can be congenital, as all the above posts have declared...
Dump your doctor and find someone who will do valid testing and consider treatment...someone who takes you seriously.
Mary in Switzerland
Posts: 1032 | From North Carolina | Registered: Aug 2003
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
sorry- skimmed thru posts, so am not sure if this has already been said.
my son definitely had congenital Lyme, tho we did not know that for years more.
i also breast fed, exclusively for the 1st year and beyond, then for much longer still.
for months i too thought that my son's extreme distress - non-stop screaming and crying, unable to settle, vomiting, etc. had to do with food allergies, especially since the onset of all these symptoms was sudden and right after i had chinese food with lots of brocolli.
but nope, food allergies had nothing to do with what was going on.
the poor baby was in pain from severe acid reflux. i established that fact by demanding that his woefully uninformed pediatrican stop throwing "colic" nonsense at me and give an alternative explanation.
ALL my son's GI symptoms disappeared within 12 hours of taking a script for acid reflux, no matter what i ate.
i'm not commenting on whether or not either of you have Lyme, just know from experience that food allergies aren't the only possibility, and boy oh boy, most peds are CLUELESS about b-feeding.
hope things improve soon for both of you- i know the kind of pain you are both in.
dill
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Holly, Thanks for posting your test results. Many would say that LabCorp is not a very good lab for lyme testing. In my opinion, IgeneX is the best. They specialize in TBI's, test for 2 strains instead of one and test all of the significant bands unlike LabCorp.
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
This is true regardless of whether it is IgG or IgM.. But again, there is no universal agreement on the significance of these bands."
You have 3 bands that he lists. In the end, lyme is a clinical diagnosis.
posted
Thanks Terry. I would also be surprised if I don't have it.
I recently tested positive for Rocky Mountain Spotted Fever. The recent WB came up negative. I haven't actually seen the report yet.
I do know that there was one positive band on each IGM and IGG. I see the Dr. next Monday and will ask for a copy of the results.
I understand that I could have both LD and RMSF but my current symptoms match up to Lyme.
Posts: 94 | From Kansas City Area | Registered: Jun 2009
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posted
My 2 sons (now age 18 & 22) have congenital Lyme. They became too sick to go to school in the 8th grade & 3rd grade.
The 22 year old graduated from high school, but he is too ill to go to college.
The 18 year old is able to go to 1 class a day and a homebound teacher came to our house for the other classes. He will graduate on his IEP goals next year.
They have been to 2 of the best LLMDs.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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lymeparfait
Unregistered
posted
Yes its congenital.
Sometimes it only tests positive in their DNA, and they may have no symptoms or very mild symptoms.
Most often, they are born with a compromised immune system along with the bacteria, many viruses and infections that come as co-infections with lyme in the mother. These are passed as well as heavy metals and chemicals. It is never just lyme.
In babies with compromised immune functions, it appears that giving them their required vaccines may set off a series of problems for some infants in their first few years of life, sometimes believed to cause autism and learning disabilities.
It is imperative to know before conceiving if you have lyme as a woman, I believe. In order to get treated, and be treated while pregnant for the best health outcome for you children.
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posted
Just adding my 2 cents. I've read that it is, and LLMD said it is. I am hoping to test my kids soon. Just no $$. I'm going to ask DR if we can start treating them without testing.
I've been sick 20 years and just got diagnosed. All three kids have serious symptoms. Have had since birth.
All had protein intolerance and had to be on hydrolyzed formulas because of vomit/diarrhea and colic. The twins never slept - still don't and they are 9. They have severe ADHD - overwhelming.
Daughter is very symptomatic, like me. Dysautonomia, headaches, very bad stomach aches, mood issues, skin issues...
I feel terrible. And, because I'm sick, I'm overwhelmed by their issues and feel out of control.
Take care of your baby now. Mother's KNOW when something is wrong.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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posted
Yes, definitely. My lyme doc and I think I am cogenital and my three children as well. Only two had very blatant symptoms as infants. One the ped said was an incessant crier. He cried all the time until he was six months old. They could never find anything wrong.
My second child was admitted to the hospital twice before she was six weeks old. Both times the ped thought she had meningitis. The spinal taps showed nothing both times. Both times she was given aggressive IV antibiotics. She started to get better as soon as the abx started and all symptoms resolved by the end of three days of treatment. I suspected some sort of infection but was told there wasn't.
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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posted
Hang in there folks and stick with your gut instinct.
My daughter was likely congenitally infected (unknowingly) with symptoms of severe constipation and sleep disturbance. Then she was reinfected by a tick bite at 2. Although she was treated with amox she never resolved and it took us years to figure out that she had babesia.
But the good news is: she was treated with zith/mepron for 2 years and she's off med and she'd doing GREAT. A MILLION times better. All the pain, all the neuro, all the digestive, all the psyche stuff is GONE.
Yes, she still has strange complaints (she said her heart hurts when she goes on the trampoline?). But she is SO MUCH better than she was.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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Everything else has been fine. No one has known the cause. She was behind in all physical developmental milestones by a year or so. She's steadily progressing though.![[shake]](graemlins/shake.gif)
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