To everyone who responded to a recent post about Lyme as a transmissible health issue, thank you very much for your response.
A check-in with an LLMD this week brought a familiar and welcome reply--apparently, Lyme is not normally a transmissible health issue.
This is certainly an area where it is important to be cautious, and to be as respectful as possible of one's partner. And yet, it was a relief to learn there may be ways to find a balance between being realistic about one's potential limitations, and returning to a fuller, more joyous life again.
Posted by Nal (Member # 6801) on :
I hear ya. One thing I wanted to share though. My dh tested borderline positive for Lyme. Means either he had it first with no symptoms and transmitted it to me (unlikely) or that I transmitted it to him (more probable).
Also, my youngest tested very borderline. She is totally healthy but I also transmitted it to her.
You definately have to live life. Just be a little cautious doing it.
Nancy
Posted by bettyg (Member # 6147) on :
Liz, I don't believe what your LLMD said, not easily transferable! We've all been reading this board long enough that is just FALSE.
Also, L.D., the SCIENCE, POLICY, & REGULATIONS book by Marcus Cohan stated it WAS transferable, and he has medical documentation to back it up.
Best wishes to you. Posted by pmerv (Member # 1504) on :
They don't really know much about transmissability yet. Bb seems to pass in utero but maybe rarely. There is no predictable abnormality in babies born to moms with LD. Many babies seem fine. There doesn't seem to be more birth defects in endemic areas than non endemic areas. How often does Bb pass and what are its effects? No one really knows.
Bb has been found in breastmilk and other body fluids but no one has proven that infection can be initiated by only a few spirochetes. AThe immune system may kill them. Ticks inoculate hundreds or thousands of spirochetes at once. Of course it may just mean that LD started from one or 2 bacteria takes years to come on, so no rash, flu-like illness, etc. But this is not known, either.
No one has studied whether Bb survive in stomach acid, so can babies get LD from breastmilk? No one really knows yet.
Some drs think the partner may have acquired LD sexually, but s/he also is exposed to the same environment so may have been infected that way.
There is a lot to learn, and just because a dr does not think Lyme is transmitted human to human, does not make him/her unreasonable, just cautious. The important thing is not how you got it, but whether you can get treated now that you do have it.
Posted by Jon (Member # 9123) on :
So there is no concrete scientific evidence showing lyme can pass through saliva, or other bodily fluids?
With all the unknowns out there for us lyme-folks I think this is the cherry on the cake.
Do you people still continue to kiss? Or engage in protected sex, or oral sex without the fear of passing this on to your partner? I can't believe in our day and age we dont know for sure if this ilness is an STD or not, absolutely ridiculous.
Posted by david1097 (Member # 3662) on :
The point of this is NOT "EASILY". Some things are easily transmisable, Lyme however I am pretty sure must be transfered in a fluid medium that is condusive to spirocete motility.
Don;t forget that when Bb is placed in distilled water, it goes immediatly into cyst form. It is also killed by sunlight. In cyst form there is no way for it to penetrate cell walls so that the only way for it to get into the body would have to be through some open wound. There are however a lot of ways that such a direct transmission may occur.
Futher to this if Bb is ingested the stomach would likely wipe out the organism, after all that is one of the reasons we have a highly acidic stomach. Lesions or wounds in the mouth are a different story though. Its when the stuff gets directly into the blood that we have a very big problem.
Just for the record I do believe strongly that human to human transmission does occur, especially in cases of heavy bacterial burden. As a precaution my feeling is that it should be checked for or at least watched for, on the other hand It is not a universal occurance. It is also accepted that the transmisability is bascially zero once antibiotic treatment has started.
I guess it goes somthing like this "trust but verify"
Posted by lymie tony z (Member # 5130) on :
personally,
I think it has to be transferable...it's a spirochete...like syphilis...
Anyone who knowingly has relations with someone unprotected is being irresponsible...period...
Liz, your asking a younger man to take on an older woman with a terrible disease that may be transmitted to himself...is that love or being selfish....
Think how sick you are...you want to give that to someone you supposedly love?
zman
Posted by riversinger (Member # 4851) on :
Hey folks! Don't forget that this is only addressing Bb! Bartonella, at least, is known to be transmissable through cat scrathes, fleas, and lice, so may be a whole different story as far as human transmission. Problems with babesia, ehrlichia, and mycoplamsma are likewise not yet known.
It seems the wisest course is to be reasonably cautious, just as you might be with the possibility of all the OTHER known STDs that could also be a factor in a new relationship.
Posted by Carol in PA (Member # 5338) on :
Tony, They haven't started dating yet. So they're not even to the point of holding hands.
And who knows what diseases this guy may have?
Carol
Posted by ping (Member # 6974) on :
Hello liz28 -
Plese excuse my assertiveness but regarding the rather negative answer on transmissibility - Don't bet on it!...
Borrelia is most certainly congenitally transmissible much of the time and I'm living proof; if you want to call this "living". My grandmother was patient zero and remained ill all her life. Both of her children were born with illness, esp. my mother and both my brother and I have Bb. Regarding sexual transmissibility, you bet! A well known Lyme doc in TX found abundant evidence and wrote about it in an article published by a major medical journal. The words "after repeated exposure" suggests that it may take more than once, but of the couples he tested, a very large percentage of both partners were infected.
If you would like more info on the article, please email me and I'll assist. It may take me a week or so to reply, but, I'll answer.
A couple of interesting markers this MD told me personally of that are not uncommon in congenital Lyme children at birth (and which I have BTW)... Lazy eye/poor eye muscles, curvature of the spine (if only slightly, mottled or splottchy skin somewhere on the body, chronic ear infections, chronic pulmonary infections (croup, in particular) and the list goes on.
Better yet, ask Dr. J. He sees lots of Bb babies.
ping "We are more than a container for Lyme."
Posted by Jon (Member # 9123) on :
ping:
I can see how this can be transmited from a Mother to her newborn child.
However the possibility of it passing through protected sex seems miniscule to me.
For the people who say that people who are treated with antibiotics can almost never transmit this disease, could you provide any scientific, peer reviewed articles to confirm this?
Posted by Mo (Member # 2863) on :
There's no proof that any of these infections cannot be transmitted.
There's some compelling info that raises a level of probablility --
Plus ... there are many other things that can be, or for that matter -- things you could pick up from HIM.
I do not agree with any notion that you should not be relating if you have Lyme!
I think safe sex is imperative in any case.. perhaps a new look at methods and protection should you be married ..
at which time you can 'marry' in health concious living, awareness and more.
Mo
[ 10. June 2006, 05:34 PM: Message edited by: Mo ]
Posted by AP (Member # 8430) on :
SOoooo.... no one on this board has sex. Wow. Fun.
Personally, I am 24, childless, and unmarried. My committed boyfriend, who has been to every doctor's appt and support group meeting since day 1 of this disease and who plans to marry me when all this is through has heard both sides of the story from medical professionals (doctors (LLMDS)) and unprofessionals (us, though sometimes we forget, we're not MDs). He still choses to climb into bed and get "frisky," because when it all boils down to it, there's no supporting evidence it can be transmitted through bodily fluids.
Posted by pab (Member # 904) on :
quote:Originally posted by Mo: There's no proof that any of these infections cannot be transmitted.
There's some compelling info that raises a level of probablility -- Mo
Mo,
Do you know Dr. J's opinion on this subject?
I discussed it with him 3 or 4 years ago and was wondering if he still had the same opinion about it?
Posted by elle (Member # 7721) on :
"Lyme is not normally a transmissible health issue"
Well . . this is such a subjective statement with no teeth.
No . . as I pass the people in my church tomorrow morning there is little chance that me or my husband or my 4 children will transfer lyme disease to any of them . . . to that end I agree with your LLMD.
After I was bit in late June 05, and I had lyme, babs, ehrilicia & bart, I was undertreated for a few weeks by my reg pcp (at that time) with doxy. For a few days, I felt good for the first time in along time and my husband and I had more than just casual contact or chance meeting, it was intentional. The next day my husband broke out in a bullseye rash in a place normally covered by clothing. Within a week, he had achy joints and a sore throat.
Two months later I had my first appointment with a LLMD who said no unprotected because . . .
My husband was tested through Igenex and he was CDC positive.
Casually transmitted. . no
Transmitted . . absolutely
elle
Posted by AP (Member # 8430) on :
I want to add that my bf was tested "just in case" for LD, and tests came up negative. he's never showed a sign.
Posted by lymednva (Member # 9098) on :
I've had this stuff for at least 40 years, according to my best guesstimate. During that time I was married for 24 years, now divorced. He thought I was "faking" all my symptoms, and that was before they were really bad.
We have three children, all of whom are now adults. Only one may be showing signs of Lyme, my middle child.
My ex, who could certainly use something to bring him down a few notches, and my other two kids, one of whom is now 30, show no signs and are both active adult athletes. My oldest completed an Ironman distance triathlon last fall.
I was ill when I was pregnant each time, and for years before then. I just thought that's how everyone felt. I nursed each of my children, the middle one the longest. I was finally diagnosed a couple of months ago.
My middle child has bipolar disorder. He's been a difficult one since he was born, so that could go either way. I believe BP disorder can show signs for years before it finally rears it's true ugly head. Of course, we all know Lyme can do likewise.
Right now he needs to stabilize since his most recent hospitalization and find another job that has better health coverage (Kaiser now). After all that settles down we can look at the Lyme issue together.
Unfortunately not much is simple with this diagnosis, even knowing if you have it! Posted by GiGi (Member # 259) on :
Urge the LLMD you are referring to contact me or my doctor. With this mind-set, he is not lyme literate. It is amazing to me, how many of the doctors and other practitioners I know in the various clinics seem to be not all well any longer either! I am very leery in this regard.
We have a report from a group of researchers in Germany who have collected samples from public telephones, post office door handles, etc. and have grown Lyme relatives in Petri dishes from every single swop they took.
A well known scientist/researcher has confirmed at a medical conference recently that a relatively new discovery of cellwall deficient borrelia can be transmitted in every way - , by ticks, by saliva, kissing, sexual intercourse; it can be passed on by touching your fingers to your lips and then touching a table and someone coming along and picking it up. I am quoting the person.
They found that this form stays very prolific and alive for as long as 72 hours, even in the sunlight. The person described it in detail and called it "very, very highly contagious". For security reasons, they cannot ship the substance from one lab to another any longer.
Many people are "infected" or exposed. How the individual person handles the infection/exposure is a different story -- some go on unaffected without a trace of illness, some feel like many here do and want to "die". Just watch the crowds with open eyes and see how many are really well.
From my vantage point and my own personal experience, these bugs are highly contagious and we will never take it lightly. They took too many years out of my life and my husbands life, and though our children remain untouched by the disease, they suffered with us.
These bugs are going to be a bigger and bigger challenge for us - no DEET and no Frontline is going to stop that. It's wake-up time!
Take care.
Posted by AP (Member # 8430) on :
Buy me a bubble. I'm going to chose to live in fear.
You know how many other horrible diseases come off of telephones and such? Give me a break. Next you're going to tell me it's airborne. I heard that from a lady and about peed my pants laughing. WTF?
Posted by mycoplasma1 (Member # 6377) on :
Come on we all know this is contagious. My Lyme Dr. in NY -Tops in the field - even said to me yesterday that he is sure this is a germ warfare agent from Plum Island (transferred by ticks, mosquitos, fleas etc..). I already knew this, but was surprised to hear it from him.
Posted by lymex5&counting (Member # 7202) on :
I wonder how Lyme Literate your Dr really is?
My internal medicine Dr and my LL. Everytime they
see me say.
"Now you are using protection, everytime, right?"
And they always say "Please get your tubes tied.
You don't need anymore babies with lyme."
I have had a tubal.
But just shows you how adament they are.
BECAUSE THEY KNOW!
Lyme x 9 all congenital or sexual transfer.
Posted by Hides1 (Member # 6348) on :
I agree that it can be transferred sexually and through breastmilk. My husband and I go to the top LLMD in NY and when he first met us he sat us down and said we must use protection otherwise we will keep reinfecting each other. All three of my children have the dreaded disease with coinfections, etc. I have to believe it can be transferred through the birthing process and breastfeeding for a couple of my kids.
I urge those who aren't taking precatutions to please do so for the sake of your loved ones. And if you think your loved one doesn't have it yet it could just be a matter of time until that person's immune system can't handle it any more and symptoms start to come out. Just because a partner isn't sick now doesn't mean he won't be in a few years. We all know testing isn't accurate and a negative could be a positive. Why take the risk????
Posted by JimBoB (Member # 8454) on :
Since SO FAR, it is ALL heresay, I think it is up to the individuals WHAT they want to do as far as protection or no protection.
I have had Lyme for over 6 years. My wife has NO symptoms at all. She just got bit by a deer tick, removed it a day later, and had no red rash. I gave her a bottle of Tetracycline just in case, but I doubt IF she has taken any, knowing her.
I did notice today that she IS putting on long pants now when working outside in her flower gardens. And she is tucking them in her socks. So all my preaching to her is doing something good.
But I have sent her articles on possible sexual transmission for months now, and she has said nothing about it at all.
IF there is a problem, maybe it would be that she would be giving it back to me, since I am the one who contracts things so easily.
But one thing is for sure, I am not going to stop living and be living in total fear every day on something that is STILL ONLY a theory.
And that IS what it is so far. We STILL have NO real studies on it that I know of. And I haven't heard of anyone who is worried enough to do so. WHY? Evidently it is NOT much of a risk or problem in the powers that be eyes.
Jim
Posted by lymie tony z (Member # 5130) on :
Hey there Carol...she would'nt be asking if they have'nt even held hands...
Jim Bob....you mean those "powers that be" that don't even recognize lyme as a chronic disease???
Oh ya...let's believe what they have to tell us....
which is a big nothing....Even the best lyme literate doctor does'nt know everything there is to know about this disease and co-infections...
Not all ticks carry this disease....so maybe your wife is safe....I sincerely hope so...
But hey BOB, what if she comes down with Parkinsons,ALS,MS...and never get's the joint pain,or rash...then what are you gonna say???
Furthermore...like AIDS carriers...there just maybe a gene that lets folks carry the disease and not get sick from it!...NOW that's a theory...
We in the lyme community should POLICE ourselves from spreading this disease...like not giving blood donations or body parts etc....
We should also take steps to prevent sexually transmitting this disease....
I personally don't even like shaking hands in church for fear of passing my bumps,psoriasis,morgellons or "contact dermititis" as my dermatologist duck refers to it>
Look...all I'm really saying is...we lymies have a moral obligation to prevent the spread of this disease...whether it's a WMD,tickborne,sexually or casually transmitted and so on...
Don't be afraid of it; don't think you're a dirty person cuz you have it; if you can have sex by all means enjoy it...BUT be mindful of your obligations.
Protect your loved ones...IF you REALLY LOVE them.
Hey, Mo....GEEZ...I think we FINALLY agree on something.......whahooo! LOL
zman
Posted by AP (Member # 8430) on :
zman, you're telling people not to be afraiid of the disease, but at the same time not to shake hands in church????
If it was up to most of you, those of us that have this disease would have it forever. We'd never get rid of it. From what I keep reading, it seems a lot of people enjoy being sick, which is ridiculous. I'm pumping as much crap into my body, taking whatever organs need to come out, not fearing CT scans because of "free redicals" and crap because I want to get better. And I will.I'm off these drugs in 2 more months. Then I have a life.
A life where I will make babies, and because i am a responsible adult, have them tested for Lyme, and treated accordingly while it's still early. I'm not a fool, I've just chosen to embrace my disease. When people walk up to me, in public, because, I'm not afraid that I am going to cause a mass outbreak of this disease by sneezing in a public place.
If this disease is so contagious and hard o get rid of, why aren't we all put in quarantine? Wht don't our LLMDs wear full biohazard suits GiGi, does yours?
This hub hub about it being sexually passed from partner to partner may or may not be true, but it's not going to scare me, or my boyfriend out of loving eachother dearly in every way possible.
Posted by duke77 (Member # 5051) on :
quote: Jim Bob....you mean those "powers that be" that don't even recognize lyme as a chronic disease???
Oh ya...let's believe what they have to tell us....
which is a big nothing....
Ditto. Just because "They" say it isn't possible doesn't mean it is not. We all know how much money and research is going to Lyme. That is why it hasn't been tested more.
I am not saying Lyme is as contagious as the plague or TB. But I do believe it is totally possible to pass it to someone through bodily fluids as well as many other insect vectors other than a tick. Lyme is the second most common infectious disease and if they counted all the actual cases it would be number one by far. I really don't believe that if was just passed by ticks there would be that many people infected. We have all read research stating that they cultured BB in breast milk, semen, saliva, fleas, biting flies, mosquitos, etc. They claim they are not sure if it is transmittable it is just found there. This is a highly adaptable, amazing, unique bacteria that scientists don't know the half of. The general consensus claims they only way the bacteria can be passed to humans is through the stomach and saliva of a tick. I find that very hard to believe.
Posted by TerryK (Member # 8552) on :
I wrote the following for my husband's website:
In a presentation at the International Scientific Conference on Lyme Disease in April, 2001, Dr. Bach stated that based on his findings, the possibility of sexual transmission needed further study.
Dr. Bach found that in a significant number of couples, both partners presented with Lyme disease although only one had a history of tick exposure. He also noted that sexually active couples have a remarkable propensity for antibiotic treatment failure and that the possibility that couples may be re-infecting one another through sexual contact should be considered.
The CDC states: "While alternate modes of transmission remain theoretically possible, it is clear that the great majority of Lyme disease cases are due to tick-borne transmission. Given limited resources, we feel it is prudent to focus resources on preventing illnesses due to known modes of transmission rather than diverting them to evaluate rare or non-viable alternate routes. Gains made in preventing primary infection through tick bites will also necessarily reduce any risk of illness that might exist due to secondary (sexual and transplacental transmission." Centers for Disease Control and Prevention (CDC) Response January 16, 2004 to Lyme Disease Association Health & Human Services Meeting, DC, November 2003
While we do know that it has been proven that transplacental transmission occurs, there are no reliable figures as to how often it occurs. Since it is not known how often it occurs, why is the CDC assuming that the great majority of transmission is tick borne?
Sexual transmission has not been studied enough to know how often it occurs either. One doctor, who has conducted his own studies states that it undoubtedly occurs and needs further study in order to determine the real numbers.
Terry
Posted by mountainmoma (Member # 6503) on :
I dont think it is fair or very nice to call others on this board irresponsible for how they express their love and sexuality. There are many of us who have not passed on Lyme to our children or lovers. We have no controlled scientific studies to base such assertions on.
I am not ready to stop living my life in a loving manner. I am glad to have found love again, I also recently have a new boyfriend.
And Jon, yes, at least some of us people still kiss and engage in unprotected sex. Of course, I have been treated for the past 2 years.
But, my youngest child nursed for a year while I was sick and her father and I were still together, with lots of unprotected contact, before I had an accurate diagnosis, and after, before I knew there was any controversy.
Posted by spiral (Member # 9217) on :
the american red cross will not accept blood donations from a person with Lyme --
Posted by bettyg (Member # 6147) on :
Duke, please hit the enter button more and double space between each paragraph so we neuro lymies can read. We thank you for your consideration.
quote:Originally posted by duke77:
quote: Jim Bob....you mean those "powers that be" that don't even recognize lyme as a chronic disease???
Oh ya...let's believe what they have to tell us....
which is a big nothing....
Ditto. Just because "They" say it isn't possible doesn't mean it is not. We all know how much money and research is going to Lyme. That is why it hasn't been tested more.
I am not saying Lyme is as contagious as the plague or TB.
But I do believe it is totally possible to pass it to someone through bodily fluids as well as many other insect vectors other than a tick.
Lyme is the second most common infectious disease and if they counted all the actual cases it would be number one by far.
I really don't believe that if was just passed by ticks there would be that many people infected.
We have all read research stating that they cultured BB in breast milk, semen, saliva, fleas, biting flies, mosquitos, etc.
They claim they are not sure if it is transmittable it is just found there. This is a highly adaptable, amazing, unique bacteria that scientists don't know the half of.
The general consensus claims they only way the bacteria can be passed to humans is through the stomach and saliva of a tick. I find that very hard to believe.
Posted by GiGi (Member # 259) on :
AP,
"If this disease is so contagious and hard o get rid of, why aren't we all put in quarantine? Wht don't our LLMDs wear full biohazard suits GiGi, does yours?"
No, he doesn't have to wear a biohazard suit, because he has Lyme Disease himself and many that come in have it too.
But at the same time, many, many carry these microorganisms in their body and yet, they are not ill and they live a perfectly normal life.
I am now well and have been for years and I do not live in fear and I move freely among people. Relapse never enters my mind.
The best defense is to clean up our body. The bugs are going to be with us - many live with them and do not get ill.
My doctor says it in these words: "The Detoxification Axiom -- For each unresolved psycho-emotional conflict or trauma there is an equivalent of stored toxins and an equivalent of pathogenic microorganisms. To successfully detoxify the body, the three issues have to be addressed simultanously.
The triad of detoxification: Detoxification of the physical body - Treatment of latent mircroorganisms and parasites - Treatment of unresolved psycho-emotional issues.
Sometimes we need to listen to ourselves.
Take care.
Posted by JimBoB (Member # 8454) on :
I agree GiGi, that sometimes we need to listen to ourselves. AND then think about what we are actually saying.
But I reiterate, UNTIL they come up with actual studies, it is pure conjecture. YOU-all do not KNOW for SURE HOW some of you got your Lyme. I NEVER saw a tick on me, but did see a red rash on the TOP of my left foot. (but solid, not a target type). AND I always wear shoes and socks, except in bed or in the shower. I had NO feeling of a tick on me, nor any pain or itching at the time.
AND since MAYBE mosquitos transfer it also, there is NO escaping it here in Wisconsin then.
AND I do agree that it is most likely transmitted through blood transfusions, since it is in the blood. Otherwise, why have blood tests for it?
IF it is transmitted through Semen or other sexual fluids, then, the whole world is in big time trouble. Since the majority probably already have the bug and don't even know it. AND are transmitting it as we read this.
SO, then I guess THIS is what the Bible talks about when it says: "And they will grow faint out of fear, not knowing the way out". There is NO hope for mankind except Armegeddon, to survive this, IF that is the case. AND it could be.
But IMHO there are a lot more things that we need to fear. A LOT more.
I hear what you all are saying. BUT you have NO proof, FOR SURE, of it. You cannot say for sure you weren't bitten by a flea, or fly or tick larvae, or mosquito, or? Nor can you say that YOU didn't give it to another person first, or that maybe THEY gave it to you first, or that maybe NEITHER of you gave it to each other; since either may have gotten it elsewhere, maybe even while you were sleeping.
Jim Posted by lymie tony z (Member # 5130) on :
YO AP, You remind me of someone on the off topic board who misquotes me and does'nt read all that I write accurately...
So anyway, you all go ahead and do whatever you want to do with your disease and your bodies and your loved ones...
this is america after all...anyone can be as obstinate as they wish...
anyone can be in denial if they wish...
But hey ya know...when ya come back on this board say a year or two later and wonder why you and your sexual partner are not well...hmmmm...
copy this discusion and put it in a drawer for yourself later...
OH yeah and when you're still ill and now have to care for a sick child....you'll be having a just peachy lifestyle...
I hope it never happens to you or anyone else out here...on this board or not...just remember...there's a reason this disease is called an INFECTIOUS disease.
There's a reason(as yet unknown) why so many of we lymies never saw the tick, or rash or whatever it was that transmitted this disease to us...
Y'all want to take the chance? Go right ahead!
I personally will not...
Liz28 originally came on this board to ask our opinion about this disease being sexually transmitted...why?
Cuz that's why this board exists... It exists cuz there isn't enough known about this disease in mainstream medicine or even in lyme literate medicine...
We on this board have nothing to gain by giving our heartfelt opinions and advice to one another...
A lot of us are here because there are too, too many unanswered personal questions about this disease...and so we impart our personal knowledge and experiences to those who seek same...
Aids was only supposed to come from monkeys....
Then it was only a HOMOSEXUAL disease...brought on by GOD to punish abhorent behavior...
but then heterosexuals got it...OMIGOD...now it's ARMAGEDDEN time.......
WHATEVER...
We live in a communication age...if we choose to ignore the information passed to others around our globe then we're missing a great opportunity.
zman
[ 13. June 2006, 06:27 AM: Message edited by: lymie tony z ]
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on something that is STILL ONLY a theory.