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Posted 3/25/2012 10:56 PM (GMT -5)
Hi everyone,

Thanks for your posts which have been interesting and informative.

I recently switched doctors and thought I'd start afresh by getting a thorough lab done. Though I'd never noticed a bite or exhibited symptoms, I requested a lyme test because I'd never had one yet live in Massachusetts/New York and know so many people who suffer from the disease. My doctor reluctantly agreed and when the results came back we were both surprised that I tested positive - for both the short-term and long-term antibodies. I've since taken a month of antibiotics.

However I don't seem to have any symptoms and wonder if this is possible? Is the lyme dormant? And if so, will it attack my body later in life? I'm an otherwise fairly healthy 30 year old female. If I were to become pregnant would there be any danger of it emerging?

Any insight would be appreciated!
Posted 3/26/2012 3:57 AM (GMT -5)
I think it is possible to still be infected and have an asymptomatic/dormant form. Was there any way that you caught the infection really early? This may be unlikely if you had an IGG response show up on your western blot.

I too know of quite a few people who have caught things early, taken a month of antibiotics, and appear to get better and not develop any chronic or persistent symptoms.

I'm not sure why some people develop more severe cases of Lyme and others seem to improve on a month of treatment. Maybe it's because of the length of time before diagnosis/treatment, certain strains being more serious, the presence of co-infections, unique characteristics of certain people that make them more susceptible, or being reinfected multiple times, or maybe they really haven't been "cured" and have just put Lyme into dormancy.

I would suggest contacting a LLMD and asking him/her what they think you should do. Since you had a positive WB you may want to go in just as a precaution so you don't allow it to progress to a more serious state. I definitely waited too long with active symptoms and kept taking steps down healthwise. Now I'm having a very hard time taking any steps back up even with treatment.

How long has it been since you stopped your month of antibiotics? Was it doxy? Did you have a known tick bite?
Posted 3/26/2012 8:47 AM (GMT -5)
There is one school of thought that the bacteria Borrelia burgdorferi and other strains is present in a lot of people. And it's not new -- they identified it in the "Ice Man" mummified remains they found in the Alps.

The opinion is not the presence of the bacteria that makes for the disease, but the inability to fight it; either because of other pathogens weakening the system, stress and environmental factors or a genetic inability to rid the body of toxins.

The tests mostly used these days look for antibodies to the bacteria -- but mostly people are made sick when they are not producing antibodies!

The general wisdom is to treat beyond the cessation of symptoms, which you have done, in that you did not have symptoms. Like any other person who has been exposed to Lyme, you will have to be vigilant. Any kind of life-changing event (even if it is happy one like a wedding or pregnancy) could set it off.

Of course, you would do well to consult with an LLMD, and especially get an opinion about how best to manage your pregnancy health.

But don't let this hang over you like some sword of doom. Life is full of challenges all over the place, don't let this slow you down!!

So glad you are feeling well, keep it up!
Posted 3/26/2012 12:13 PM (GMT -5)
Dear Summer3 and Achievinggrace,

Thank you for your feedback. I have to admit, having close friends who have suffered no end because of lyme disease it does hang over me like a sword of doom!

Can you recommend a resource to locate LLMDs in the MA/NY area? What more can they do aside from testing and prescribing antibiotics?

And AG, could you explain in greater detail what you mean by life events setting off the lyme?

Thanks again!
Posted 3/26/2012 3:53 PM (GMT -5)
I agree. I believe we are in contact with many different strains of bacteria and theh either lie dormant for life or activate now and again. Our immune systems are meant to keep these things in check which is why when we are overwhelmed with stress, these things seem to come to the forefront. Once our bodies get overwhelmed and no longer work effectively, we get sick. Or when our bodies are in contact with too many toxins, bacteria or environmental stressors, our immune systems cave in.

You say a fairly healthy 30 year old, do you have any symptoms at all??
Posted 3/27/2012 6:13 PM (GMT -5)
None that I'm aware of... and I went comprehensively through the very thorough list on this forum as well as other sources online...
Posted 3/28/2012 8:55 PM (GMT -5)
Just sharing my opinion - Do you have any symptoms whatsoever? The testing is absolutely known to cause false positive just as it causes false negative....When it comes to Lyme a lot of times it is a clinical diagnosis. For example, Hep C test is also known to do this, but if you don't have any of the Hep C symptoms (of course with Hep C you follow up with the confirmatory testing) then no need to rely on the test. So, if you are saying you have no symptoms (swollen knee / joints, rash, etc) then most likely you had a false positive. The test is SO sensitive that it can actually pick up antibodies that are not even related to Lyme, its a very sensitive test in a good and bad way, so if you showed a few reactions but you aren't having any symptoms clinically then you don't have Lyme most likely. Why search for something that isn't bothering you. I mean I know what you are saying, you are afraid if it bothers you down the road. But really would you want to subject yourself to antibiotic treatment just based on a test that is known to cause false positive. I would say if you don't have ANY symptoms of Lyme then the test is no good, good luck.
Posted 3/30/2017 10:19 AM (GMT -5)
Hei Neurogurl,

In 2006 you posted about an issue "Palinopsia", after 11 years can you please share your experience with me ? Was that finally diagnosed to be Palinopsia/Eye related issue? Or it was linked to other disease? Please share your experience with me! I have had trails in my vision for 9 months now! I can see the trails everytime there is a motion in a dim light. Is it really Palinopsia? or ? I have done MRI of brain which came normal, and I have been at 4 different eye doctors with no proper answer, just the last eye doctor said it can be due to irregular cornea of my eyes. However according to my search on internet irregular cornea should not cause after immages! Please help.
I just found you in this forum that is why I am asking this question here, however Palinopsia might not be relevant to this forum.

Regards
Nana1988
Posted 3/30/2017 10:31 AM (GMT -5)

Neurogurl said...
Just sharing my opinion - Do you have any symptoms whatsoever? The testing is absolutely known to cause false positive just as it causes false negative....When it comes to Lyme a lot of times it is a clinical diagnosis. For example, Hep C test is also known to do this, but if you don't have any of the Hep C symptoms (of course with Hep C you follow up with the confirmatory testing) then no need to rely on the test. So, if you are saying you have no symptoms (swollen knee / joints, rash, etc) then most likely you had a false positive. The test is SO sensitive that it can actually pick up antibodies that are not even related to Lyme, its a very sensitive test in a good and bad way, so if you showed a few reactions but you aren't having any symptoms clinically then you don't have Lyme most likely. Why search for something that isn't bothering you. I mean I know what you are saying, you are afraid if it bothers you down the road. But really would you want to subject yourself to antibiotic treatment just based on a test that is known to cause false positive. I would say if you don't have ANY symptoms of Lyme then the test is no good, good luck.

First of all, this is a really old thread. Please do be aware of this.

Actually, this is not true. The testing is so insensitive that it often misses up to 50% of those that actually have the infections.

Not only that, but Lyme can most definitely present with symptoms other than a swollen knee or joints or a rash. The identifying bull's eye rash is found in only 10 - 20% of those with these infections, so that can't be counted on either. I've had Lyme for over 45 years total, and have never once had the bull's eye rash.

That's the thing - these infections are so misunderstood and there is so much misinformation out there that you have to know the sources where the information is coming from. And, without getting into any conspiracy theories, we can't even trust the information from the CDC on these infections - because they are following outdated information. They follow IDSA (Infectious Disease Society of America) treatment standards and information and those were removed from the National Guidelines Clearinghouse some time ago - replaced by what we follow here - ILADS (International Lyme and Associated Disease Society) treatment standards.

So, if you want real, good, scientifically solid information, please either stay with us or go to www.ilads.org/

​
ILADS vs IDSA:
​​http://www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/​​


​​http://archinte.jamanetwork.com/article.aspx?articleid=226373​​


​​http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/​​
Posted 3/30/2017 10:35 AM (GMT -5)

Nana1988 said...
Hei Neurogurl,

In 2006 you posted about an issue "Palinopsia", after 11 years can you please share your experience with me ? Was that finally diagnosed to be Palinopsia/Eye related issue? Or it was linked to other disease? Please share your experience with me! I have had trails in my vision for 9 months now! I can see the trails everytime there is a motion in a dim light. Is it really Palinopsia? or ? I have done MRI of brain which came normal, and I have been at 4 different eye doctors with no proper answer, just the last eye doctor said it can be due to irregular cornea of my eyes. However according to my search on internet irregular cornea should not cause after immages! Please help.
I just found you in this forum that is why I am asking this question here, however Palinopsia might not be relevant to this forum.

Regards
Nana1988

Hi Nana1988,
Welcome to the Lyme forum! I realize that this is not likely the forum you normally post in, but I did want to comment on something in your post.

" I can see the trails everytime there is a motion in a dim light."
These are known as 'tracers' here in the Lyme forum. We get them a lot, as well as seeing spots (sometimes they have color to them and sometimes they don't) as well as other visual things.

Obviously, without talking to you more and finding out what other symptoms you may have, I'm not saying you have Lyme - only that we know that symptom here.
Posted 3/30/2017 11:52 AM (GMT -5)

springsjean said...
I agree. I believe we are in contact with many different strains of bacteria and theh either lie dormant for life or activate now and again. Our immune systems are meant to keep these things in check which is why when we are overwhelmed with stress, these things seem to come to the forefront. Once our bodies get overwhelmed and no longer work effectively, we get sick. Or when our bodies are in contact with too many toxins, bacteria or environmental stressors, our immune systems cave in.

You say a fairly healthy 30 year old, do you have any symptoms at all??

Personally this is my intuition as well. I think I harbored these pathogens since I was a kid, lowly symptomatic but high-functioning until I got mono at 24 and that's when I went down. I wish we had better testing because then we could figure out how many asymptomatic cases there are, how many of those cases eventually develop certain conditions or problems (like higher rate than general pop w/o the pathogens, conditions like fibro, RA, CFS, neuro-degen stuff), and how many never go on to have any problems. And then we could figure out if even having these pathogens but being asymptomatic still puts one at much higher risk for certain conditions and or manifestation of illness down the line, and what the stressors and triggers might be for launching these pathogens from their dormancy (I think there is a general thinking that stress, new pathogens, environmental factors can all serve as triggers which makes sense to me especially given my own case).

Personally I would rather treat these things if I knew I had them but was asymptomatic in order to hedge my bets because I think they can manifest decades down the line especially as we get older and immune system weakens and BBB gets more permeable. But a good question is can these organisms just be part of the normal flora for many people who harbor them and how often do they remain unscathed from the actual pathogens throughout their lifetimes.
Posted 3/30/2017 12:00 PM (GMT -5)
Agreed, Sebreg!! On all of that!
Posted 3/30/2017 12:11 PM (GMT -5)

Traveler said...
Agreed, Sebreg!! On all of that!

yay! haha I realized how old this thread was after I posted but it is such a fascinating topic to me, I really hope we can get answers to some of these questions because I think it could prove hugely beneficial for human health and helpful for a variety of conditions by expanding our understanding of the role chronic pathogens might play in human health and what activates them if they have been dormant for a while. The key, the holy grail is getting gold standard diagnostics for this stuff so we can properly identify who has what!
Posted 3/30/2017 12:19 PM (GMT -5)
Now, if we can only get that gold standard testing!!!!
Posted 3/30/2017 1:27 PM (GMT -5)

sebreg said...

springsjean said...
I agree. I believe we are in contact with many different strains of bacteria and theh either lie dormant for life or activate now and again. Our immune systems are meant to keep these things in check which is why when we are overwhelmed with stress, these things seem to come to the forefront. Once our bodies get overwhelmed and no longer work effectively, we get sick. Or when our bodies are in contact with too many toxins, bacteria or environmental stressors, our immune systems cave in.

You say a fairly healthy 30 year old, do you have any symptoms at all??

Personally this is my intuition as well. I think I harbored these pathogens since I was a kid, lowly symptomatic but high-functioning until I got mono at 24 and that's when I went down. I wish we had better testing because then we could figure out how many asymptomatic cases there are, how many of those cases eventually develop certain conditions or problems (like higher rate than general pop w/o the pathogens, conditions like fibro, RA, CFS, neuro-degen stuff), and how many never go on to have any problems. And then we could figure out if even having these pathogens but being asymptomatic still puts one at much higher risk for certain conditions and or manifestation of illness down the line, and what the stressors and triggers might be for launching these pathogens from their dormancy (I think there is a general thinking that stress, new pathogens, environmental factors can all serve as triggers which makes sense to me especially given my own case).

Personally I would rather treat these things if I knew I had them but was asymptomatic in order to hedge my bets because I think they can manifest decades down the line especially as we get older and immune system weakens and BBB gets more permeable. But a good question is can these organisms just be part of the normal flora for many people who harbor them and how often do they remain unscathed from the actual pathogens throughout their lifetimes.

Sebreg - my husband and 2 of 3 kids test positive (elispot) and the one who was negative on elispot has some lyme bands through Igenex. No symptoms.
Posted 3/30/2017 1:34 PM (GMT -5)

k07 said...

sebreg said...

springsjean said...
I agree. I believe we are in contact with many different strains of bacteria and theh either lie dormant for life or activate now and again. Our immune systems are meant to keep these things in check which is why when we are overwhelmed with stress, these things seem to come to the forefront. Once our bodies get overwhelmed and no longer work effectively, we get sick. Or when our bodies are in contact with too many toxins, bacteria or environmental stressors, our immune systems cave in.

You say a fairly healthy 30 year old, do you have any symptoms at all??

Personally this is my intuition as well. I think I harbored these pathogens since I was a kid, lowly symptomatic but high-functioning until I got mono at 24 and that's when I went down. I wish we had better testing because then we could figure out how many asymptomatic cases there are, how many of those cases eventually develop certain conditions or problems (like higher rate than general pop w/o the pathogens, conditions like fibro, RA, CFS, neuro-degen stuff), and how many never go on to have any problems. And then we could figure out if even having these pathogens but being asymptomatic still puts one at much higher risk for certain conditions and or manifestation of illness down the line, and what the stressors and triggers might be for launching these pathogens from their dormancy (I think there is a general thinking that stress, new pathogens, environmental factors can all serve as triggers which makes sense to me especially given my own case).

Personally I would rather treat these things if I knew I had them but was asymptomatic in order to hedge my bets because I think they can manifest decades down the line especially as we get older and immune system weakens and BBB gets more permeable. But a good question is can these organisms just be part of the normal flora for many people who harbor them and how often do they remain unscathed from the actual pathogens throughout their lifetimes.

Sebreg - my husband and 2 of 3 kids test positive (elispot) and the one who was negative on elispot has some lyme bands through Igenex. No symptoms.

So will you be treating the child with no symptoms...?
Posted 3/30/2017 2:13 PM (GMT -5)
They were tested about a year ago and we did a month of abx with some herbs. They had no reaction whatsoever. My husband also did a month of abx. Nothing either. I am not willing to give them additional abx, especially since there's no way to gauge treatment if there are no symptoms. Plus, the abx could possibly do more harm than good. I will just always know if they do get symptoms to consider Lyme. Honestly, I truly think a lot of people will test positive. And I don't know if it is inaccurate testing or just that most are exposed to it. That is just my opinion based on my family.
Posted 3/30/2017 2:39 PM (GMT -5)
It's really difficult to know what to do in these cases, isn't it?
Posted 3/30/2017 2:42 PM (GMT -5)
I personally believe that a lot, if not most people, have been exposed. But I also think that most are asymptomatic. I am of the school of thought that if you are not having symptoms, don't treat it.

Pregnancy may trigger it, but I would be much more concerned about passing it on to my child, which is entirely possible. You can take antibiotics during your pregnancy to help prevent that. The challenge is finding an OB who will agree to that and is familiar with what protocol to use.
Posted 3/30/2017 2:52 PM (GMT -5)
Yeah, i could have passed it to them. But my doc told me they likely would have autism like sx. They are all socially fine, good grades and active in sports. And no issues with pregnacy/births.

My 2 girls have very low cd57 (30 & 50) and my son is close to 200. He was the negative elispot, but lyme specific bands on igenex. My husband (positive elispot & labcorp wb) has cd57 close to 200 too.

Really makes you wonder...
Posted 3/31/2017 6:47 PM (GMT -5)
Totally understand your thinking k07 on not treating if asymptomatic, this is a very personal choice. And there are risks especially to the heavy-duty antibiotic route. I think I've just been so burned by these infections that I am quite suspicious and paranoid of these organisms ha! so I view things from that prism!!

Better diagnostics will really help disentangle these situations and potential links between the organisms and if they are causally linked to various health conditions down the line in a person's life, or are cofactors. Or do they just remain benign and operate as part of the normal flora for a large subset of people? Right now we just don't know enough. I can't wait for the answers though, wherever the evidence ends up it will be nice to have clearer answers on the subject.
Posted 4/1/2017 6:49 AM (GMT -5)
I will be SO glad when this all makes sense. Just wish those better diagnostics would hurry it up. Every time something new pops up they say, should be ready in 2 years. Ugh, I'm not a good waiter. You'd think lyme would have taught me more patience by now!
Posted 4/1/2017 7:44 AM (GMT -5)

k07 said...
I will be SO glad when this all makes sense.

Ya know, things really fell into place for me after reading the recently-released book "Unlocking Lyme" by Dr. Bill Rawls. Everything I'd learned about Lyme and Co's all finally "clicked" for me (and this is after reading 15-20 books on Lyme and accumulating over 300 links on the topic).

My LLMD and my research tell me that it's the health of the immune system that makes the difference between those of us dealing with symptoms and those who are asymptomatically infected.

Dr. Rawls writes of "System Disruptors" - factors that disrupt the immune system and set the stage for chronic illness. Here's some general info on the topic:

/rawlsmd.com/featured-posts/chronic-immune-dysfunction-lyme-disease

Dr. Rawls' writings just make sense to me.
Posted 4/1/2017 7:57 AM (GMT -5)
I read that book too. It does make sense to me, but then it also goes against what my llmd says and how he is treating me. I'm going to give the abx 6 months. Rawls says once we get better testing a lot of people will find out they have lyme. When that happens I think we will naturally have to address why not everyone is sick.
Posted 4/1/2017 11:51 AM (GMT -5)
What I wonder about people who test positive but don't have symptoms is:
If they don't treat and ten years (for example) they become symptomatic - is it now more difficult to treat because it's been with them longer?

Does it continue to grow even when no symptoms are present?
If so - then maybe treating with positive test result is warranted.
Or at least a 'challenge' - with herbs or abx for a couple weeks- to see if a herx happens?

Or when it's asymptomatic - it is just dormant and not proliferating?
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