posted
Visited Dr. H on east coast (the best one) and mainly discussed with his female PA. Everything is great. But I got some surprise answers (to me anyway):
1) Congenital is possible but normally the child will have to be very sick the first 5 years, not just with settled symptoms. I have read so many stories on this site, seemingly suggesting the opposite.
2) Kid's Complaining about leg pain is really growing pain, especially if this happens at night time.
3) Lyme is hardly sexually transmitable.
Any thoughts?
Posts: 822 | From midwest | Registered: Apr 2009
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posted
I don't think anyone knows everything about this.
He might be right, but there are other people who know more than I do, that disagree.
Posts: 984 | From US | Registered: Dec 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
The opinions that were expressed to you were most likely those of L and not of Dr H.
Even if Dr H said those things, they are not all true.
Lyme is in essence Syphillis. Read some on that being sexually transmitted. Lyme is most certainly in bodily fluids.
Congenital Lyme can be seen years to decades after birth. If an adult can become symptomatic out of nowhere (inferring they were a-symptomatic for years) why can't kids?
It surprises me you heard these things, but they give different reasons all the time for a myriad of their own reasons, often times to protect their own interests because of the size of their practice (which is necessary)
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
"Hardly" isn't the same as "not." Apparently, at the New Haven conference, the common thread in all of the presentation was that the doctors and researchers know no more than us.
The offices of Dr J, Dr S (former ILADS pres), and my doctor have all told me that is an STD. You should check out my link. One poster even believes his son passed it to his girlfriend by kissing; not sure what to make of that one.
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sutherngrl
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posted
I know another LLMD that says it has not been proven that it is sexually transmitted. He didn't say it wasn't though, just not proven. I see couples where both have and where only one has it. So you can't prove it was passed sexually or if the other partner just was bitten.
I do think kids have growing pains. I did as a kid and didn't have LD then. My grandkids do and they don't have LD.
Don't know much about the congenital part. I think some ppl think its been passed down when actually they may have all just gotten bitten by infected ticks. Like when a whole family has it, maybe it was passed down.... or maybe they all just took a hike or went camping or just cooked out in the back yard.
In many cases it would be hard to prove. If your baby is born ill thats another thing. That would for sure be congenital. If they are not and you don't have them tested right away and when they are several years old and get sick, how do you know they weren't bitten by a tick?
Until someone can absolutely scientifically prove these things, then no one really knows for sure.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Hoosiers51
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posted
Syphilis causes oozing genital sores that are considered "very infectious." Lyme does not cause infectious sores on the genitals. Considering people use their genitals when they have sex, I'd say there is a distinction.
They say you can still transmit syphilis without the sores, but I do not know how common that is, so I won't comment on how sexually transmissible Lyme may or may not be. So I'm not saying Lyme isn't sexually transmissible, but that I can see why the Lyme-is-similar-to-syphilis argument doesn't hold much weight. It holds weight until you talk about how it's spread.
I also have heard soooo many things on this site that seem to contradict what LLMD's have told me. It does kind of upset me, and I think patients should be choosy with what they believe from the forums.
I think Lymenet is an AMAZING resource that has changed my life for the better, but you just need to pick and choose what you believe, especially what you believe without a shadow of a doubt.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Pinelady
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posted
Agree. Until they do all studies from larval ticks
to say its not is wrong. They should say could be.
If it is transmitted ovarily it should be suspect.
extracts from 42 pools (total of 950) of larval A. americanum collected in Southwest Mississippi were tested for the presence of E. chaffeensis and Rickettsia species. Of these extracts from pools, nine of 37 (24%) were PCR positive for a Rickettsia sp., most often, R. amblyommii; none had evidence of E. chaffeensis,
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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quote:Originally posted by djf2005: The opinions that were expressed to you were most likely those of L and not of Dr H.
Dr. H himself told me the same thing regarding sexual transmission.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Hoosiers51
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Also, if you are concerned about children having Lyme symptoms, pick up the Lyme Times magazine "special issue" called the Children's Issue (blue cover). It's available at www.lymedisease.org.
After reading that, there are a LOT of warning signs a child may have Lyme (congenital or otherwise). The magazine makes it sound like these congenital kids have many symptoms, not just one or two.
I lost my magazine, so I can't look up the statistics, but I don't think pain was the most common manifestation in children. Children with Lyme, especially congenital, seem to be very ill (my impression after reading this magazine which is a resource for parents, chock full of studies, facts, etc).
So if I had a child that only had pain, I wouldn't be too convinced, I'd just keep my guard up and maybe treat to be cautious. But I wouldn't say pain is a sure sign. It seemed like a lot of the kids had all kinds of problems, like headaches, fatigue, etc etc etc. They are sick like we are.
I'm SURE there are exceptions to this, and when you are dealing with Lyme and kids, it's always best to be safe rather than sorry, and treat young. Remember, I'm not a doctor. But I'm just trying to say that I see where Dr. H is coming from, after doing some of the reading that I did about children with Lyme.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I was also surprised that they took her blood for IgeneX at the office, fully aware that she was on abx up to that morning. Isn't there needs to stop abx for 2 wks before drawing blood?
I had so many things in my mind and I forgot to question that until later of the day...
Posts: 822 | From midwest | Registered: Apr 2009
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Hoosiers51
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posted
My previous LLMD would take my Western Blots without taking me off meds, and I would still test very positive. (current LLMD hasn't retested yet)
I don't understand why some doctors take patients off meds to do the WB. It is the antibody response they are measuring, so it shouldn't matter.
Posts: 4590 | From Midwest | Registered: Jun 2008
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sutherngrl
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posted
No need to stop as far as I can see. I tested positive while I was on antibiotics.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thanks all. It's comforting to know that the blood work can be done without stopping meds.
I have to say that everyone in Dr. H's office has the most graceful manner. We were there for literately more than 3 hours, longer than I expected.
Posts: 822 | From midwest | Registered: Apr 2009
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quote:Originally posted by onbam: [QB] "Hardly" isn't the same as "not."
"Lyme is hardly sexually transmitable" makes no sense to me.*
Is it or is it not?
I say it is quite possible.
*or did the PA say "hardly ever"? That would make more sense. (though I would still disagree)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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ping
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posted
I completely disagree with all 3 statements, whomever might have stated them, in the manner in which they're written here.
Unfortunately, I'm living proof that all 3 are incorrect.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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sutherngrl
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posted
Ping, I totally understand how you can prove the congenital transfer; child is born..... test positive and is very ill. No other way a newborn could have gotten it. Well unless you have animals in the house and child becomes ill after coming home from hospital.
Not saying its not sexually transmitted, and wouldn't be surprised if they discover that it is. But I just don't think its been proven.
I still think your partner is just as likely to have gotten bitten by a tick as to have had it transmitted sexually. That still remains to have been proven.
I have LD, proven clinically and by testing. Hubby does not. So say he gets sick next week. That does not prove he got it from me. Even if we both became ill within a week or a month or a year of each other, still doesn't prove we got it from each other. So how can you say for sure its sexually transmitted?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I think (opinion only; I don't know any more than anyone else here) that since Lyme prefers to hang out more in our tissues and not so much in our body fluids, that if it can pass sexually, it will do so more rarely than other diseases that are more present in the body fluids.
If they have so much trouble finding Lyme bacteria in blood and spinal fluid, then it may be just as rare in other body fluids.
Studies HAVE found it in different body fluids at some time or another.
On the other hand, many Lyme sufferers live with a partner for years who never gets infected. If it were easily passed, then I think we would hear a lot more stories about infected partners than we do.
I think the reason you hear "there's no evidence" is because no studies have been funded, not because a study has been done and found that it can't be transmitted sexually. We just don't know for sure.
I don't know anything about kids' symptoms, except that it's heartbreaking that little babies and kids get this.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Hoosiers51
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posted
Here is a more direct link to that magazine issue available to buy ($15...well worth it):
I think this is important for every parent that suspects Lyme to read. Also important for anyone who is advising others online!
Just want to say that I believe it's always best to err on the side of caution. Also, trust your intuition as a mother.
But also, it's important to be armed with the facts, the opinions of professionals, etc...so you don't let fear or let things you read online (that may or may not be true) cloud your judgment.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Tracy9
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posted
I think LightATtheEnd explains it well. It is my personal opinion that sexual transmission is unlikely, from everything I have read and the many couples I know where one person has beeen infected for years and the other is not. It has never been PROVEN to be sexually transmitted, as far as I know by any study.
However it has been proven in many studies to be congenitally transmitted. On the ILADS website, these studies are shown on a presentation, so you can find them right there.
My friend's baby's cordblood tested positive for Lyme (not Sara/Luvdogs, her sister.)
Both my children have congenital Lyme, and yes, they were both very sick from the day they were born; from epilepsy to innumerable ear infections, asthma, obstructive sleep apnea, growth hormone deficiencies, behavioral issues, depression, anxiety, ADHD, asthma, mastioditis, sensory integration disorders, strep throat, learning disabilities, the list just goes on and on.
They have had multiple hospitalizations, surgeries, illnesses, medications, throughout thier lives.
As for the leg pain, they have complained more of migrating joint pains, not just leg pain.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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WildCondor
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posted
They likely meant to say sexual transmission is possible, but rare. It can happen and does happen but is uncommon, make sense?
Most kids do show signs within 5 years of birth or are born autistic (Lyme induced) once treated properly they can return to being a normal kid.
After seeing over 20,000 patients I'd say the info you got is accurate.
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posted
Good to hear that majority here think the saying is reasonable, though I understand nothing can be proven to a Tee.
I truly appreciate your stories and thoughts. They help me to stay sane - that has been kind of hard lately.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
All of this jives with what my LLMD told me.
Posts: 252 | From New York | Registered: Apr 2010
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ping
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posted
quote:Originally posted by sutherngrl: Not saying its not sexually transmitted, and wouldn't be surprised if they discover that it is. But I just don't think its been proven.
I still think your partner is just as likely to have gotten bitten by a tick as to have had it transmitted sexually. That still remains to have been proven.
I have LD, proven clinically and by testing. Hubby does not. So say he gets sick next week. That does not prove he got it from me. Even if we both became ill within a week or a month or a year of each other, still doesn't prove we got it from each other. So how can you say for sure its sexually transmitted?
A microbe can be sexually transmissible without causing infection / illness each instance in which a person has sex.
As for my partner, he had no sx's either and now has 2 beautiful sons.
I still disagree with all 3 statements and those of us who have lived with trans-generational TBD's here in TX, spanning a period of about a century, or more, would disagree also.
[ 05-28-2010, 11:32 AM: Message edited by: ping ]
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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IckyTicky
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posted
All I know is my husband has Lyme and no tick or rashes that he knows of..and didn't feel sick until after 9 years of us being married. I know all three of my kids have Lyme.. the oldest probably got it from a tick. But my younger two don't know what a tick looks like and my youngest started with neuro symptoms as a baby.
I'd say it's far liklier that they got it from me, than ALL my family getting bitten by individual infected ticks.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
I personally know of a several people who have given lyme to their spouse and several others who have given birth to children born with lyme.
Sad but it seems that it can be sexually transmitted and is possible to transmit to children before birth.
I mean it makes sense it is a spirochete like syphillis and if something can get in the cells and all the organs there is going to be a chance it can be transmitted sexually, just don't know how often?
Paulette
-------------------- Paulette
Staying positive - One Day at a Time! Posts: 10 | From DFW, Texas | Registered: May 2010
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