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Avatar universal

Lymes question

I was wondering if Lyme Diease can be dormant without even knowing you were bit by a tick, I dont ever recall being bit by a tick, I dont even go in wooded areas or live around where theres deers, I have dealing with nerve caused from taking a medication but was suggested to get a Lyme test done, I got the IgG/IgM Borelli test done it came back NON-Reactive , that test was done here in Canada, but someone told me that Lyme can be dormant , was wondering if that is only if someone had a deer tick that had some symptoms that went into remission and was dormant , cause I never ever had these symptoms until I came off a Medication which is common from others these symptoms I am dealing with. I had an ANA test done , every blood work imaginable , MRI, Cat scans, Ultrasounds, X-Rays , all came back perfect. My GP told me that if I had Lyme based on the many symptoms I am dealing with it would of shown up on my blood work for Lyme Diease. I was wondering if Lyme can be Dormant , what are the possible causes of it being triggered? I Never ever had anyt fatique at all ever, I have more energy then anything, I never had Headaches, I Never had flu-like symptoms, I never had any fevers, Nor Chills, I read the fatique is the most common symptom, I never had any skin rash , lessions, Bullseye , so I am trying to figure this out. I am in the process of recieving a Lymes Kit from Igentics from CA, I just hate to waste  the money if I am trying to look for something that snot there. My GP said its unlikly that I have Lymes and that the higher the possibility what I am dealing with is from that medication as a Neurologist and Neuro surgeon also in writing said it caused from the medication. Just want to know someone elses opinion. Thank you
133 Responses
Avatar universal
Hello and welcome --

I will go through your message making comments (below) in this message window, but the short answer is yes, you could have Lyme, and yes, I would get the IgeneX tests done, just as you are.

That's the short answer; here is the long one:

-- "I was wondering if Lyme Diease can be dormant without even knowing you were bit by a tick, I dont ever recall being bit by a tick, I dont even go in wooded areas or live around where theres deers,"

Many of us never saw the tick that bit us, and the ticks are everywhere, not just where deer are.  There is some thought that mosquitoes and dog ticks can also carry Lyme (and I got something other than Lyme from a dog tick, in a city park across the street).  You do not need to be a forest ranger to get Lyme.

-- "I have dealing with nerve caused from taking a medication but was suggested to get a Lyme test done, I got the IgG/IgM Borelli test done it came back NON-Reactive , that test was done here in Canada,"

I'm not clear on what you are being treated for, but someone thought your symptoms sounded enough like Lyme to order the test.  The Western blot/ELISA tests you probably had for Borrelia (=Lyme) are not very accurate, and about half the time they miss an infection, esp. if it has been a while (months or longer) since you were infected.  These standard test results are usually reported by the lab according to a very high standard that was developed not for diagnosis, but for tracking the spread of Lyme across the continent, meaning that several indicators of Lyme are ignored, so that you may well have Lyme but the tests aren't very accurate, and the way they are interpreted often ignores evidence of infection.  

It also sounds like you were probably not tested for other infections that the same ticks carry perhaps half the time, but that's a different conversation.  Starting with Lyme testing is a good first step.

-- " but someone told me that Lyme can be dormant , was wondering if that is only if someone had a deer tick that had some symptoms that went into remission and was dormant , cause I never ever had these symptoms until I came off a Medication which is common from others these symptoms I am dealing with."

It is indeed possible and even common to have been bitten and gotten infected but to have few if any symptoms, because a healthy immune system can often beat down the infection and hold it in remission for a long time ... until another illness of some sort arises that puts stress on your immune system, and then the Lyme bacteria can start to act up and give you symptoms that are noticeable.  It's like not having enough police to contain all the bad guys in the neighborhood.

I think that is what happened to me ... I felt tired and out of sorts for a year or more, and the soles of my feet were sore in the mornings, but nothing bad enough to send me to the doctor.  Then I must have been bitten (again) and was suddenly very ill, and finally then diagnosed with Lyme and another tick disease (babesiosis, like malaria).  Lyme is sneaky, and it's often that we do not know when we were infected or what we have, until a knowledgeable doc comes on the scene.

-- " I had an ANA test done , every blood work imaginable , MRI, Cat scans, Ultrasounds, X-Rays , all came back perfect.  My GP told me that if I had Lyme based on the many symptoms I am dealing with it would of shown up on my blood work for Lyme Diease."

With respect, docs put way too much faith in the common Lyme tests (W.blot and ELISA), which are often inaccurate.  Lyme is supposed to be a clinical diagnosis, aided by test results, but docs are too accustomed to relying entirely on the tests and ignore the suffering patient in front of them.  Happens to many of us.

-- "I was wondering if Lyme can be Dormant , what are the possible causes of it being triggered?"

Triggers can be a re-infection with Lyme through a new tick bite, or through a new bite with a co-infection that overloads your immune system and allows the earlier Lyme symptoms to show strongly.  There is much that is not known, and it is like the old days of medicine before docs all became scientists first and physicians second.

-- " I Never ever had anyt fatique at all ever, I have more energy then anything, I never had Headaches, I Never had flu-like symptoms, I never had any fevers, Nor Chills, I read the fatique is the most common symptom, I never had any skin rash , lessions, Bullseye , so I am trying to figure this out."

I'm not clear on what your current symptoms are.

-- " I am in the process of recieving a Lymes Kit from Igentics from CA, I just hate to waste  the money if I am trying to look for something that snot there."

Good for you.  IGeneX tests in a different way from the usual Wblot/ELISA tests, and can pick up older infections that the Wblot/ELISA tests don't.

-- " My GP said its unlikly that I have Lymes and that the higher the possibility what I am dealing with is from that medication as a Neurologist and Neuro surgeon also in writing said it caused from the medication."

Do I understand correctly that your neuro thinks you are having a medication reaction?  Neuros are generally not believers in Lyme, so this is not terribly surprising.  They are taught that Lyme is hard to get and easy to cure with a couple weeks of antibiotics, but that has been shown  inaccurate in more recent research.  

I am not medically trained, but here is what I do in a similar situation:  get the test results,  take the doc's comments under advisement, and then take the test results to a Lyme specialist for a second opinion.  I would likely NOT tell the current docs that I was planning to see a Lyme specialist, because the docs may then not want to see you again, fearing getting involved in what the docs deem malpractice, and you may need those docs again later.  No point in making enemies.

Lyme specialists can be any kind of MD, but infectious disease docs and neurologists in particular are sadly not often Lyme-aware.  

If you search online for "Alberta LLMD" or wherever you are or can get to, you may find some leads to a Lyme specialist.  LLMD is NOT an official title and is used only among us patients to denote an MD who things progressive thoughts about Lyme.  No doc calls him/herself an LLMD.

Also you could send an email to

             contact [at] ilads [dot] org

and request a referral to an LLMD in your area.  That is the main organization for LLMDs.  Their website also has information about Lyme research and diagnosis.

There is also a group called 'canlyme' that may have a referral function or some hints on finding an LLMD in your area.

I hope this has been helpful -- please let us know if we can help further or if you have any questions .... and let us know how you do!  We've all been where you are.

Take care --
Avatar universal
You don't describe your symptoms so I can't give any feedback on whether they are consistent with Lyme or not.  But it is true that the initial blood test is frequently a false negative.  It was for me.  

Also, Lyme can go dormant without you even seeing a tick.  The larvae and nymphs are tiny and can easily be missed.  I did have an initial illness with fever, chills, hoarseness and malaise, but I had a week of strong penicillin and it went away.  I didn't realize I had Lyme and that because of the insufficient antibiotics, it had just gone into hiding. For nearly 5 years, I would get these bouts of terrible fatigue and oppressive "heavy head" as I called it, once or twice a year for 1-3 weeks each time.  Finally, I developed chronic symptoms, starting with fatigue, light sensitivity, and chronic shortness of breath.  Every person with disseminated Lyme has their own unique story of disease presentation and progression.

I know it can be difficult to find a Lyme treating doc in Canada.  If you think Lyme might be a possibility, I personally would go for an IGeneX Western Blot and a PCR test.

Have you checked your symptoms against the Burrascano checklist?
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
1763947 tn?1334058919
I agree with Jackie and Rico, yes it cal lay dormant and even a big stress factor in your life can bring it to life. My test were negative until IgenX fount my Lyme and the co-infection bartonella. My first tick bit, not sure if I had others, was 18 years ago. I had fatigue and aches and pains, even passing out but I was misdiagnosed with other ailments until something major happened in my life which brought on the Lyme full force.
If you could tell us your symptoms, we could probably tell you more but it is important to remember that Lyme mimics lots of other diseases.
1763947 tn?1334058919
Sorry about the typos, I have big time brain fog and memory problems, I might be thinking something but it doesn't come out as what is written.
Avatar universal
Thank you everyone for replying, I am gng to explain my symptoms as best as I can , well first off I would like to brief my story so you have an understandment what happened to me. It started in August 2009 , I was on vacation in Florida , I was taking OTC sleep aid Nytol for years every nite abt 50mg , I worked two jobs ,well anyway when we went on vacation we were gone for a Mth, so I stopped the Nytol while I was on vacation ,after abt 2 weeks stopping them I noticed burning and itching on a private area, shortly after abt 2 weeks after I went back home after out vacation and went back on the Nytol, back to work it went away. Then in Nov 20 2009 (stoppped taking the Nytol again), I resigned from my one profession and stared to focus on our Home business , we went back down to Florida for the winter for vacation, abt Dec 8 2009 exact date I started to experience that burning ,itching again , as time went on it had gotten worst , I couldnt barley walk it was so painful , couldnt wear clothes either, I went to the Docs down Florida was tested fir EVERYTHING!!!! couldnt find what was causing it , one Doc said Vulvodynia , they gacve me antibiotics, steriod creams, Premarin cream, etc...was given  Gabapetin for 2 weeks at the end they decided to give me Clonzepam/Klonopin and told me it will stop the burning, I never ever took any medications prior to that in my entire life!!!! . Well abt 3 mths taking that perscribtion and stopping taking Gabapetin for 2 weeks I started to experience burning on my legs I had a first panick attach, I had a convulsion , now I also want to mention I NEVER ever went outdoors other then walk in the community , the same as when I was home in Canada , never walked on trails , go to any parks etc... never hike, dont garden nothing , anyways back to my story , so I went to my GP and he told me to increase my dosage of the Clonozepam  from 1mg to 1.5mg , so I did as these drugs are extremly dangerous they are anti seizure medications I didnt know at the time , I just want that pain to stop, and was told it was gng to stop taht pain . Anyways long story short around 4 1/2 taking taht perscribtionand wasnt getting anywhere my GP told me to just stop them cold turkey, there is a web site called the heather ashton manual , you can google , as well as google Clonozepam withdrawl syndrom, it takes along time to recover from down regulation of Gaba Receptors that the drug did . I am 26 mths off that drug and still suffering immensingly, well I was always having good days where the symptoms wax and wane and fgelt great throughout a mth , but in Januray of this year I took a turn for the worst appearantly its not uncommon as I am on a support Forum called benzo buddies.org , anyways then someone freaked me out and told me all kinds of info abt Lymes , well I got a dog abt 1 year ago, and I have walked him , we went to a doggie park , I called them they said theres no known case of Lymes in taht area. When I was in Florida in November 25 2009, I took Childrens Benadryal and had a severe reaction with electrical voltages surging throughout my entire body and spams, Restless leg syndrom all over my entire body along with every symptom I had came on OVER the top for 5 days straight, then finally subsided , they in Dec I went into my hottub again and was putting my neck and shoulders by the jets and I started to have severe I mean severe muscle spasms all over in my hands feet etc... and I went down hill since thenMy GP believes me without a doubt that I am experiencing Benzo w/d /recovery, anyways my symptoms are as listed.....

Anxiety -I never had that before in my life
Bone pain all over my entire body
my neck/shoulders/face extermly stiff -I can turn my neck no problems but it very tight
Electrical stinging sharp sharp stinging throughout my entire body , I have this sensativty symptom if I scratch, rub any part of my body it triggers that stinging all over not one part of my entire body literally does not sting , its now wqhen I yawn , , turn my neck, even wiggle my ankles I sting all over, my fingers hurt so bad from the stinging , its like my fingers are broken , at times I feel like I am walking on crushed bone, I get deep muscle burning on top of all that , I have relly bad insommia, I have cramps all over my body , I am in constant pain 24-7 now, I dont get any breaks from this pain anymore. I even got reved up from taking magnesium, and Vitamin D3 .

What I DONT HAVE

I never had fatique
I never had chills
I never had fever
I never had body aches, but I do feel like my muscles are bruised from all the stinging

Thank s for listening
Or Joint pain
Avatar universal
Thank you for the details -- others can respond on the specifics, but based on all your comments, I would still suggest that you consult a Lyme specialist.  Your history is complicated by various medications your well-meaning docs gave you, which add medication-reaction symptoms on top of illness-generated symptoms.

Ticks that carry Lyme+ are pretty much everywhere, including Canada and Florida.  In your situation, I would find a Lyme specialist, even if it means you have to travel to do so.  
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