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Posted 4/4/2014 12:08 PM (GMT 0)
There are also people who are married and the spouse doesn't get it, so it's just a coin toss I guess. This would mean it's spread much easier, person to person than aids or hepatitis C. It's like catching a cold from someone.....
Posted 4/4/2014 2:25 PM (GMT 0)
Hi Maine and Roots.

I would say it probably falls in the neighbourhood of not being nearly as easy to be transmitted as the flu, cold, or other airborne. But at the same time yes you are right, it is probably easier to spread than HIV or hepatitis C. Maybe more like Hepatitis B?  That is it could be potentially spread by bodiliy fluids.  Now if the bodily fluids got on your skin?  Maybe in wouldn't spread, but maybe it would?, but what if they got in your mouth, genitals, eyes, or a surface where the bacteria can get easier access.

I think there are also variables here in transmission such as infection load of the person who has lyme ,where is the infection in their body, how long the person has had the disease, the health of the person, the health of the persons immune system, or even whether the person is treating the disease, if the person has been successfully treated, or not treating the disease.

Again, couples have had it where only one has it like the woman, and the man never gets it. For that maybe the woman has had it for awhile, and maybe was somewhat treated, the immune system kicked in, and now the lady only has a brain infection. So will it be transmitted sexually or even in a tear ? Probably not.

Now let's go for the example of a person that had it, was treated aggressively, was on antibiotics for a year or so, treated with ILADs guidelines, and successfully went into remission. Will that person likely spread it even with the right conditions for the bacteria? Probably not.

Now let's take someone who has had it for 2 years, can't afford treatment because they don't have the money or resources, doctors won't treat them because they don't believe in "Chronic Lyme". Now this person has a high infection load, is untreated, not treating the disease, the Lyme has even knocked out their immune system. Now is this person infectious? Yes I am saying they are. Some of us might get defensive on this position because we don't want to worry about being "infectious" to others because of the seriousness of this disease. We want to think oh it only comes from a tick bite. Then we ended up catching it from somone else who was untreated, don't know what the hell we caught, go from doctor to doctor for who knows how long, finally find out about Lyme disease. Then they say well do you remember a tick bite? No I don't remember being bit by a tick (happens in around 50% of cases), oh well you must have been bit by a tick. Oh okay, then the person just believes the doctor that they were bitten by a tick.

I'm not saying it happens all the time, my case was rather very unlucky. But this DID happen to me and I am not making this story up, have no reason to make it up, and my life has literally been turned upside down because of the impact of this! Sure enough I have Lyme disease! And I know for a FACT, there was no bug bite. I am not an outdoors person, I live in freezing cold nothern Alberta Canada, and I got sick from this contact of meeting someone with untreated chronic Lyme disease with bartonella! But still instead of saying it only comes from a tick, if we can say no there is a chance of it being passed on then people will be more aware of it, and reduce the risk of it being passed on to others. I myself have been extremely cautious, washing my hands, using hand santizer before I touch other peoples stuff, and I have been treating aggressively with antibiotics, and trying to keep everything as clean as possible. Am I likely to transmit it? I am going to say it is likely I won't if I don't keep this up.

So do you see all those variables? It makes it pretty complex. We would prefer to have a clear cut answer, is it or isn't it? My Mom is even well I didn't catch it how come I'm not catching it, I just say, Mom, I am on so many darn antibiotics I doubt you will catch it from me. But then she argues, well you still have the disease in you so you must be able to transmit it.  Agian I just think no I'm on so many herbs and anti-microbials.  But then again maybe she is right too, but I don't want to spread this to my Mom and feel like she is at risk.


So this is the complexity of the argument.

Yes there is a feeling of panick if you can spread the disease because this can be very very serious. I remember when my friend told me about Lyme disease and how she was infected I was having nightmares of being in the middle of the woods... No I wasn't scared of a bear or getting lost, I was freaking out because I thought I would get bit by a tick and catch Lyme disease! Then I read oh 'it's from a tick bite, and not caught person to person' , I did my research so thought casually meeting my friend was no big deal and didn't even fear it. My life has not been the same since, and hear I am about 4 and a half months later and I am still ill! Juggling all these medications it is actually unbelievable!

And people just think it's unbelievable that this happened! The consequences, how it was transmitted, all this! And ya actually I kind of agree it is unbelievable, I can't believe I have had this health catastrophe and have to take all these medications myself after being so healthy all my life, but this is what happened and I know it happened like this. To add to the unbelivability of it, I appear to be fine from those that are around me. No I'm definitely not okay. Slowly healing though, and trying to deal with the illness at this point in time is all I can do. Maybe try and tell my story to others to prevent it from happening in the future.

Post Edited (LymePickle) : 4/4/2014 12:47:15 PM (GMT-6)

Posted 4/4/2014 8:33 PM (GMT 0)
Hi LymePickle

I just stumbled upon this thread, it has been a bussy week...

Your story amazes me, but also worries me in some kind of way, in fact, I have many questions to ask you.

I feel there is a combination of many assumptions, a lot of 'ifs' and a large quantity of coincidences that may have lead to your actual infection. I have been on this forum for a while and this is totally new to me.

Besides ticks, there are other insects and Arthropods that can pass these infections: bed wants at home or in a hotel, at a friend's hous, fleas (my former dermatologist assured me that many many households have fleas), lice (many schoolchildren have lice), dust mites (pillows, mattresses, carpets, furnished furniture), and then in warmer climats or seasons: mosquitos, horse flies, ticks. It is almost impossible to not come in contact with these vectors, you would have to live in total isolation. (I'm well aware that not all of these insects and arthropods carry these infections, please, I don't want to scare anyone smilewinkgrin )

It could be possible you caught some viral infection just a few weeks before, taking incubation time into account, you could have been falling sick the night you met your friend. You could have been infected with Lyme before, but you could have been asymptomatic, or not noticing anything that is too much of a change. The symptoms could start to show after this possible attack on your immune system, because of a stressing factor?
My Lyme symptoms started showing up after EBV, which was then the cause of Hodgkin's Lymphome. From then on, my immune system just collapsed and the **** hit the fan.

I'm certainly going to ask my dr about this. I hope I'll remember, cause I have 1,5 month to go until I will see him again. He's pretty well informed about Bartonella, I hope he can give me an answer.
What did your dr tell you exactly when you presented him the theory of your infection?

I was a bit upset and also stunned by what you wrote, this could make anxious people even more anxious: have you read anywhere that the bacteria could spread through touching the clothes worn by someone with LD, Bartonella or Mycoplasma? I'm just very curious if there has ever been proof of something like this?
~and if I didn't get it from her tear then I got it from the germs on her finger when she touched my phone. Or from germs I got on her clothing from hugging her but the tear makes the most sense~

Looking forward to your response

MarieLS
Posted 4/4/2014 8:53 PM (GMT 0)
The fact that you got sick 48 hrs later is unusual. When most people are bitten by a tick or the sort, they get sick a few weeks later, not within a day or two. And like traveler said, the Bb does not live outside the host -

and for those of you questioning if it could be transmitted by saliva, I too was wondering the same thing.

But I also read somewhere that the lyme bacteria cannot survive the digestive enzymes in the saliva - so I thought I would bring that point up.

It is very hard for so many of us to pinpoint where or when we got bitten, especially if we didn't have a tickbite - so we search for other possibilities.....

I did indeed have a tickbite, but my kids did not - and they all have lyme - I originally questioned if it could be transmitted via saliva, but I don't think it can, however I am still not 100% convinced!

just wanted to throw my two cents in =)
Posted 4/4/2014 11:23 PM (GMT 0)

MarieLS said...
Hi LymePickle

I just stumbled upon this thread, it has been a bussy week...

Your story amazes me, but also worries me in some kind of way, in fact, I have many questions to ask you.

I feel there is a combination of many assumptions, a lot of 'ifs' and a large quantity of coincidences that may have lead to your actual infection. I have been on this forum for a while and this is totally new to me.

--> hi Marie I am happy to share my story. Yes lots of variables but there are lots of people who mysteriously get sick. Then they finally get diagnosed with Lyme disease and go with the doctor in that they may have got bit by a tick.

Besides ticks, there are other insects and Arthropods that can pass these infections: bed wants at home or in a hotel, at a friend's hous, fleas (my former dermatologist assured me that many many households have fleas), lice (many schoolchildren have lice), dust mites (pillows, mattresses, carpets, furnished furniture), and then in warmer climats or seasons: mosquitos, horse flies, ticks. It is almost impossible to not come in contact with these vectors, you would have to live in total isolation. (I'm well aware that not all of these insects and arthropods carry these infections, please, I don't want to scare anyone smilewinkgrin )

-->Hi Marie. I think the bulk of these infections originally originate from mice or rats which we all know are probably among the most diseased animals on the planet. We generally complain in Canada about our long cold winters but it's a blessing in the sense that it does help keep diseases like this down. People argue that it should have come in from a vector, but it has spread with no vector between mice. There are studies that show this. Also Stephen Buhner also mentions the possibility of transmission in bodily fluids and that spirochetes have been found in tears and other bodily fluids. I think if happens and I know for sure other people have claimed that too. We have a tendancy to think the doctors are always the experts, but I think really they are not. They just are like anyone else and know what they know from their experiences. Unless they are a doctor specializing in a certain field.

It could be possible you caught some viral infection just a few weeks before, taking incubation time into account, you could have been falling sick the night you met your friend. You could have been infected with Lyme before, but you could have been asymptomatic, or not noticing anything that is too much of a change. The symptoms could start to show after this possible attack on your immune system, because of a stressing factor?

-->No I've received my flu vaccination for years and was upto date on all other vaccinations. I've had EBV but that is a kind of herpes virus that virtually everyone gets anyways. I think it would be the Lyme knocking out the immune system that would cause a relapse of this virus rather than the virus letting out the Lyme. Just my own thought, but I had this virus already in my body for years. Probably since l was a teenager.

My Lyme symptoms started showing up after EBV, which was then the cause of Hodgkin's Lymphome. From then on, my immune system just collapsed and the **** hit the fan.

I'm certainly going to ask my dr about this. I hope I'll remember, cause I have 1,5 month to go until I will see him again. He's pretty well informed about Bartonella, I hope he can give me an answer.
What did your dr tell you exactly when you presented him the theory of your infection?

-->my general practitioners and ER doctors I saw said no this could not be transferred like this. They said if it was we would have epidemics of this. Well we do have epidemics of this actually. Also my family doctor said if that is the case I would be one in a million and the likelyhood of that happening is so low. Well I guess I defied the odds. My Lyme literate doctors also had an opinion. They both said they don't think it could be transmitted like this however they both agreed nothing is impossible. My LLMD did make the remark that 50% of people don't recall a tick bite or have a rash. My LLND did mention that he has treated someone with Lyme who ALSO claims to have caught it casually. So there we go I'm not the only one. They did both agree that I have Lyme . You can ask your doctor but you know what? Truth is they don't know.

I was a bit upset and also stunned by what you wrote, this could make anxious people even more anxious: have you read anywhere that the bacteria could spread through touching the clothes worn by someone with LD, Bartonella or Mycoplasma? I'm just very curious if there has ever been proof of something like this?

--> I don't think it is that infectious and I think if you did a load of laundry that would kill any Lyme germs for sure. Also bartonella would probably die in the laundry too. Mycoplasma is a bit more infectious than the other 2, but according to my LLMD it's not as big of a deal and the majority of the general population already has it. Normally our immune systems would keep it in check. But of course in Lyme disease if just adds to the illness. Mycoplasma can be passed by a simple sneeze.

~and if I didn't get it from her tear then I got it from the germs on her finger when she touched my phone. Or from germs I got on her clothing from hugging her but the tear makes the most sense~

-->I believe it came from her fingers and then onto the surface of my phone. I believe if it would come in contact with clothes the clothing material would have an absorbing effect on the germs. But surfaces like glass or plastic or skin are a bit more likely to transmit this kind of germs.

Looking forward to your response

MarieLS

And yes I'm so sure this happened "casually", there is no other place that this could have come from. please keep in mind though she was untreated with a higher infection load. I'm not trying to scare people or make anyone anxious, just trying to bring more awareness from my experience of contracting this hopefully preventing something like this from happening in the future. If I was more mindful of this I could have at least been far more cautious. I met her fearing no risk of transmission.
Posted 4/5/2014 12:05 AM (GMT 0)

Chapelle said...
The fact that you got sick 48 hrs later is unusual. When most people are bitten by a tick or the sort, they get sick a few weeks later, not within a day or two. And like traveler said, the Bb does not live outside the host -

and for those of you questioning if it could be transmitted by saliva, I too was wondering the same thing.

But I also read somewhere that the lyme bacteria cannot survive the digestive enzymes in the saliva - so I thought I would bring that point up.

It is very hard for so many of us to pinpoint where or when we got bitten, especially if we didn't have a tickbite - so we search for other possibilities.....

I did indeed have a tickbite, but my kids did not - and they all have lyme - I originally questioned if it could be transmitted via saliva, but I don't think it can, however I am still not 100% convinced!

just wanted to throw my two cents in =)


Thanks for your 2 cents in Chapelle.

Keep in mind it was a combo of Lyme, Bartonella, and Mycoplasma that got me sick. I started getting mild symptoms 24 hours later on the surface it infected me (my lips, so mild lip burning), and it was 72 hours later when I had full blown symptoms. But when I say full blown symptoms I mean that is day one of the meningitis, insomnia, anxiety... Now these are all primarily Bartonella symptoms. At first I thought the bartonella symptoms were Lyme symptoms, but I have since learned to distinguish between them. There may have been lots of germs from her tear, maybe this was more potent of infection load that even a tick bite?! Maybe that's why I got sick so quick. I know it's the infection load that causes the symptoms.

Also, it doesn't live well outside of its host but that doesn't mean it just dies instantly. It has been found and cultivated from bodily fluids. I know Lyme generally oxidizes easily like an apple going brown after it is bitten, but how long until that point that it dies? Or does it just go into a cyst and get itself protected only to rebirth as spirochetes inside another host? We don't really know, but what we do know is that I caught Lyme disease in this kind of condition where it was passed on outside of a host environment.

Also I had someone tell me our tears have salt in them and bacteria can't really live well in our tears, tears also have enzymes lysozymes that break down bacteria as well. But apparently Borrelia likes tears and viscous fluids.

I have not been bitten by any ticks. I'm still certain that this is how I got infected. Maybe I'm just the unlucky one that defied the odds, or maybe it happens more often than we think and we like to just think it came from a tick. We have to keep in mind Lyme Literate doctors consistently are finding only around 50% do recall a tickbite. This statisitic is even coming from Germany where they do their studies as well. Also only 50% remember the EM rash. I think it goes to show it does happen. In some areas they are saying only 30% remember a tick bite! Now that is getting to the point where maybe it's not just coming from ticks.

If all your kids got Lyme? See I spoke with my Lyme Literate doctor and he also said he has treated a patient who caught it from their roommate who recently got bit by a tick. It may have happened?

Lyme Literate Doctors are also finding between couples, they keep reinfecting each other if they both don't get treated, just like other STDs. But then some Lyme Literate doctors meet people where this is not the case even among couples. I think it does happen but there is just lots of variability.
Posted 4/5/2014 1:50 PM (GMT 0)
yeah, my kids all have it (definitely non-congenital) - this all happened in the fall, but I am asking myself what actually happened?

1 - Did everyone get a tick on them and get bitten?
2 - Did two of us get a tick bite initially and then the tick got mixed up in the laundry and bit everyone else?
3 - Did only 2 or 3 of us get a tickbite, and then it was transmitted via sharing utensils and cups, etc?

We will never know!! My husband has yet to be tested
Posted 4/5/2014 5:19 PM (GMT 0)
I think the laundry would kill the tick and the germs so it's not in the laundry. The high heat of the dryer even would cook the tick.

Did everyone catch just Lyme or were there any co-infections? And did you all get the same kind of infection? Or was it a mixed bag. To me it sounds like you caught just Lyme.

I think ya we will never know but we can still be cautious about it in the future and consider the possibility of transmission from person to person. With treatment I like to believe it is not going to be transmitted person to person. One good side is at least treatment has started early.
Posted 4/5/2014 9:26 PM (GMT 0)
Let's not forget that these infections are spread by all kinds of insects. I don't believe that anyone can say that they have never been bitten by a mosquito, spider, ant, flea, horsefly, deer fly, sand fly, chigger or bedbug. And considering the smallest of nymph ticks is the same size as any period on this page, we can't even say for absolute positive that we have never had a tick attach either. If you think so, take a look at the size of the period again - please.

Please don't take this post wrong - it's not about proving anyone wrong, it's about making people aware that the possibility of getting these infections from incredibly small insects is very high - even if they believe they aren't in an area where Lyme is prevalent. How many of us have had a mosquito bite we were aware of until it started to itch?
Posted 4/5/2014 9:50 PM (GMT 0)
I know Traveler, you are right. Its just that we have been on SO many hikes over the years with the kids - it was so hard to believe that on this one hike we all got bitten. I even thought, well maybe one of the kids got bitten over the summer on a different hike, but then that wouldn't match up to the timing of the symptoms - b/c we all came down with lyme symptoms pretty much around the same time. What I really think happened was this - we did get lost on the trail, and went down the mountain the wrong way - there were tons of bushes and thorns, and probably tons of ticks too!!!
Posted 4/5/2014 11:26 PM (GMT 0)
I still think there is a difference between someone who has Lyme disease that is untreated compared to someone who successfully treated it. Obviously the person who treated it or treating it is not infectious. The person who is untreated can potentially infect others.

They are capable of cultivating Lyme spirochetes in Petri dishes that are even exposed to the air! It's tough to grow them and make more because Lyme is a slow growing germ and is very fastidious in the sense that it requires certain conditions to grow. But the germ isn't instantly dead the second oxygen touches it. If they are in fluid that helps protect it a little more from oxygen.

My story of the tear that I got Lyme disease is the truth. I'm standing by my story of this source of infection because that's how it happened. I would hate for this to happen to another person. People are going to argue it sends unnecessary fear and precautions and the thought of "being infectious". I think precautions should still be taken by both those with the illness and those around someone who has it, especially if they are not even treated.
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