Aa
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
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 --
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 --
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
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
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.
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.
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.
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
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
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.
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.
Your symptoms are definitely neurological. I don't know anything about the medications you were on, but it sounds like your nervous system is in hyperdrive, overreacting to stimulus. Your experience with Children's Benadryl sounds like you are overly reactive to antihistamines, again showing oversensitivity. (I get restless legs with some antihistamines...it is a known side effect in some people.)
Twenty six months should be plenty of time to get over withdrawal from a drug. That your doctor told you to quit cold turkey when the literature clearly says to decrease dosage and wean yourself off, doesn't say much for your doctor's knowledge.
Have you had your immune system checked to see if it is either overreacting, or lower than average? (A basic IgG/IgM test....it can be high or high-normal in autoimmune conditions and low or low-normal in immune suppressed people. Mine with Lyme and Bartonella was low-normal even when I was very sick.)
I would also encourage you to get checked out for tick borne disease for multiple reasons. One is that Bartonella can cause the anxiety, muscle and bone pain. Bartonella has been documented in at least 15 different insects. You can get it from the bite of any of them, or from a cat or dog scratch. It is not exclusive to ticks. You might check out the earlier post on this forum about the Bartonella checklist. IgeneX is your best lab for finding it. Many people who habe it test false negative, which is where an experienced LLMD comes in.
Your other symptoms could all be caused by Lyme (which can also cause anxiety and muscle pain and drug/chemical sensitivities).. You do not have a typical presentation, but then everyone has their own unique story to tell. You haven't had many chances at exposure, but it is not impossible. I didn't have many risk factors either, and I still got it. As long as you don't know what you have and doctors haven't helped so far, it is worth checking out Lyme and possible coinfections.
P.S. There is no single "required" symptom of Lyme. While most people have fatigue, some don't. While joint and muscle pain are also common, I haven't had either one.
Also, don't take any more Nytol or any other antihistamines. These so-called safe OTC drugs can be dangerous for some people.
Twenty six months should be plenty of time to get over withdrawal from a drug. That your doctor told you to quit cold turkey when the literature clearly says to decrease dosage and wean yourself off, doesn't say much for your doctor's knowledge.
Have you had your immune system checked to see if it is either overreacting, or lower than average? (A basic IgG/IgM test....it can be high or high-normal in autoimmune conditions and low or low-normal in immune suppressed people. Mine with Lyme and Bartonella was low-normal even when I was very sick.)
I would also encourage you to get checked out for tick borne disease for multiple reasons. One is that Bartonella can cause the anxiety, muscle and bone pain. Bartonella has been documented in at least 15 different insects. You can get it from the bite of any of them, or from a cat or dog scratch. It is not exclusive to ticks. You might check out the earlier post on this forum about the Bartonella checklist. IgeneX is your best lab for finding it. Many people who habe it test false negative, which is where an experienced LLMD comes in.
Your other symptoms could all be caused by Lyme (which can also cause anxiety and muscle pain and drug/chemical sensitivities).. You do not have a typical presentation, but then everyone has their own unique story to tell. You haven't had many chances at exposure, but it is not impossible. I didn't have many risk factors either, and I still got it. As long as you don't know what you have and doctors haven't helped so far, it is worth checking out Lyme and possible coinfections.
P.S. There is no single "required" symptom of Lyme. While most people have fatigue, some don't. While joint and muscle pain are also common, I haven't had either one.
Also, don't take any more Nytol or any other antihistamines. These so-called safe OTC drugs can be dangerous for some people.
Yes, your symptoms are many of the symptoms I have from Lyme and Bartonella . I agree with everyone to find a LLMD. After 2 years of treatment, I still get the muscle aches, electric shock like pains and anxiety but it reduced drastically, I also have other neurological symptoms. I am in FL now and yes you can get Lyme here as far as Canada goes, I wouldn't be surprised. Our CDC is finally admitting it is more of an epidemic than they knew and more people are reporting it because they now know what it is. Same could go for Canada. It may just not be reported.
To avoid the illness progressing, I would see an LLMD even if you must travel.
Let us know how you are doing.
To avoid the illness progressing, I would see an LLMD even if you must travel.
Let us know how you are doing.
Quote from Ricobord ...."basic IgG/IgM test....it can be high or high-normal in autoimmune conditions and low or low-normal in immune" , I had that test it came bacl NON-Reactive , I also had an ANA test done in Florida and Canada , that test was done 3 times since Januray this year came back Negative , that test was for Auto-Immune Diease , can Lyme symptoms stay steady steady 24-7 , as with Benzo Recovery it can definatly , someone mentioned that 2 years in W/D should be more then enough time for recovery , not in Benzo Recovery its not , some people take up to 5 years to compltly recover, one lady never had never ever had a break from any symptoms they were 24-7 up until 3 yeras and a mth after her 3rd year off she woke up one morning and every symptom were completly gone 100% , its known to do this, I guess what I am concerned abt is that I always had symptoms that waxed and waned every Mth , I had days where I felt 95% recovered , only to get hit again with all the symptoms all over, so very discourging , we question everything every day what else can be wrong , anyways it was ONLY after taking that Childrens benadryal once I got a increase intensity of symptoms that they were so intense I never thought I would make it through the nites, it lasted for abt 5 days, then they calmed down , then a few weeks after that I went into the Hottub and the pressure from the water of the jets reved all the symptoms up so severly that I only then started to have bone pain throughout my entire body , I never had that before, right now it feels like my face is ready to explode there is so much pressure on my face entire face, its like something is pushing the muscles to expand, my legs are extremly heavy as weel as my arms it feels like the bones are expanding , so extrem,ly painful, my neck , shoulders, arms , hands everywhere feel this way , my hands feel so huge it feel ackward picking anything up yet they dont even look swollen at all !! , I was wondering doing anything physical like walking , excercising or do light housework make the Lymes symptoms get more intense as it do for Bnezo Recovery ? I am so confused I never thought anything abt Lymes diease as I had no reason to suspect it ever , as far as the Bartonella I dont have any symptoms to that either, I have no or had no marks on my body that would give me any indication I was biten by anything , or was anywhere to get a tick bite , I am severe pain with the burning tonite as the muscles feel like they are being pressure and compressing my nerve endings literally , I am so much pain . Thankl you everyone for posting and replying,.
Also I would like to know can have Lyme Disease can causethe same symptom wide spread all over your ENTIRE body all the same time 24-7, I have the Bone pain , muscle tightness all over my ENTIRE body and I mean all over private areas everywhere, along with the Electrical/stinging /burning ENTIRELY all over every and I mean every part of my entire body, mouth, eyes , ears, nose , private ares both ends, head ,everywhere, I scratch I get spasms , It triggers all the symptoms more intesnsly , even just a massage, just wiping myself after gng to the BR my muscle go weak or I get spasms all over, I get intense stinging all over, every symptom of the stinging , burning , electrical ,my body is experienced it goes in my mouth with the exact same intensity , is taht Lymes symptoms , I had that a mth just after stopping Benzos .
Lyme and the other infections carried by the same ticks affect everyone differently, and the symptoms can come and go over time.
The first thing is to find a knowledgeable MD.
The second thing is to get a proper diagnosis.
The third thing is to get the right treatments.
Then go have fun!
Yes, we can and do recover. Sometimes it takes longer for one person to start to feel better than another, but you don't know until you try.
The first thing is to find a knowledgeable MD.
The second thing is to get a proper diagnosis.
The third thing is to get the right treatments.
Then go have fun!
Yes, we can and do recover. Sometimes it takes longer for one person to start to feel better than another, but you don't know until you try.
I am so sorry to hear how much pain you are in. I can't imagine how hard it has been for you. I really don't know anything about the medication you are describing, but with a 5 year excruciatingly painful withdrawal, I would think your doctor would have warned you before you started the meds.
What might help point you in the right direction is to get tested for Lyme at IGeneX. I did the full Lyme and coinfection panels. I thought I had a particular coinfection, but it turned out I had a different one. I didn't remember a tick or a rash either. (Eventually I figured out that I did see a tick - thought it was a small scab- and a rash - thought I had missed a spot with my sunscreen, but it was 6 years earlier!).
Some people hike for years and never get Lyme. Some people walk through some leaves once and get it. Lyme and ticks are carried by mice, squirrels, rabbits, numerous birds (incl pheasants & turkeys and migrating birds), and about a dozen other mammals besides deer. If you have been anywhere near anyplace these birds or animals have been, you could have been exposed. The belief that you can only get it walking through a meadow in Connecticut is sadly out of date.
The immune system function test I described produces numbers as results, not "non-reactive". It sounds like you had a Lyme screening test, either an ELISA or an IFA. They produce either "reactive" or "non-reactive" results. I was negative/non-reactive on this test, too. But I showed Lyme specific antibodies in my IGeneX Western Blot. You might also ask for a CD57 test. I don't know if IGeneX offers it, but LabCorp does. The CD57 immune cell is only known to be suppressed in HIV and Lyme.
If you do have Lyme, it is certainly treatable. You would need to find an LLMD, as it is extremely difficult to find a mainstream doctor willing to prescribe the long term antibiotics necessary for treatment of late stage Lyme.
What might help point you in the right direction is to get tested for Lyme at IGeneX. I did the full Lyme and coinfection panels. I thought I had a particular coinfection, but it turned out I had a different one. I didn't remember a tick or a rash either. (Eventually I figured out that I did see a tick - thought it was a small scab- and a rash - thought I had missed a spot with my sunscreen, but it was 6 years earlier!).
Some people hike for years and never get Lyme. Some people walk through some leaves once and get it. Lyme and ticks are carried by mice, squirrels, rabbits, numerous birds (incl pheasants & turkeys and migrating birds), and about a dozen other mammals besides deer. If you have been anywhere near anyplace these birds or animals have been, you could have been exposed. The belief that you can only get it walking through a meadow in Connecticut is sadly out of date.
The immune system function test I described produces numbers as results, not "non-reactive". It sounds like you had a Lyme screening test, either an ELISA or an IFA. They produce either "reactive" or "non-reactive" results. I was negative/non-reactive on this test, too. But I showed Lyme specific antibodies in my IGeneX Western Blot. You might also ask for a CD57 test. I don't know if IGeneX offers it, but LabCorp does. The CD57 immune cell is only known to be suppressed in HIV and Lyme.
If you do have Lyme, it is certainly treatable. You would need to find an LLMD, as it is extremely difficult to find a mainstream doctor willing to prescribe the long term antibiotics necessary for treatment of late stage Lyme.
Can anyone tell me can you get reved up symptoms intensify from drinking caffine, or just taking magnesium, or even Vit D3 , as it did to me , I am really scared to death abt this
Being fearful is a symptom of Lyme -- it affects the brain and mood. I was certainly jumpy and emotional.
And because body chemistry is messed up in Lyme, it seems reasonable that there could be a strong reaction to various chemicals, whether food, drink or medication.
Maybe stop the coffee as a first step (it's a stimulant) and talk with your doc.
And because body chemistry is messed up in Lyme, it seems reasonable that there could be a strong reaction to various chemicals, whether food, drink or medication.
Maybe stop the coffee as a first step (it's a stimulant) and talk with your doc.
Thank you , I dont drink caffine , I tried green tes a year ago it reved me up , I was wondering dng anything physical cause symptoms to get intense, I have severe neurlogical symptoms
Here's the bad news: green tea has almost as much caffeine as coffee.
Lyme does affect the neurological system in a major way, tho more in some than others -- it's one of Lyme's tricks, to show up differently in different people at various times.
Anxiety is a major part of Lyme misery in many of us -- it certainly was for me. The neurological type of Lyme can inflame the brain and nervous system, while in others Lyme focuses on the joints and muscles.
You could try taking magnesium (Mg) supplements -- Lyme uses up Mg in the body, and it is easy to become deficient. Muscle cramps, irritability, anxiety, heart palpitations -- all those can be affected by low Mg. I know, it sounds like it couldn't have such a great effect, but it can. Mg carries the electrical signals from the nerves through the muscles, and that affects all the bodily messages internally.
I have read that any kind of Mg ending in "-ate" is most absorbable in the body. I take a variety that includes Mg citrate, orotate and aspartate, and have previously taken Mg malate. It's very soothing to the nervous system. Be sure to tell your doc you are taking Mg supplements, tho, so s/he can take that into account.
Lyme does affect the neurological system in a major way, tho more in some than others -- it's one of Lyme's tricks, to show up differently in different people at various times.
Anxiety is a major part of Lyme misery in many of us -- it certainly was for me. The neurological type of Lyme can inflame the brain and nervous system, while in others Lyme focuses on the joints and muscles.
You could try taking magnesium (Mg) supplements -- Lyme uses up Mg in the body, and it is easy to become deficient. Muscle cramps, irritability, anxiety, heart palpitations -- all those can be affected by low Mg. I know, it sounds like it couldn't have such a great effect, but it can. Mg carries the electrical signals from the nerves through the muscles, and that affects all the bodily messages internally.
I have read that any kind of Mg ending in "-ate" is most absorbable in the body. I take a variety that includes Mg citrate, orotate and aspartate, and have previously taken Mg malate. It's very soothing to the nervous system. Be sure to tell your doc you are taking Mg supplements, tho, so s/he can take that into account.
My neuro symptoms were so severe they misdiagnosed me with MS. I know how scary that is. Hyper anxiety too.
Hi thank you again , I tried Magnesium , natural calm , it reveed the stinging and electrical so severally , I only tried Green Tea twice in 2 years since stopping that perscribtion , someone mentioned they thought I was suffering 5 years in an ealier post , but I was only on that persribtion for 4 1/2 Mths only not years and I have been off that medication that intially caused this now 26 Mths , I asked a question earlier not sure if anyone noticed that question , do excercising , or evening dng lite housework cause symptoms to increase with anyone ? I just got back from ER and was tested for everything , liver/kidney/inflammation / CBC test , EEG , complete panel of blood work all came back Perfect!!!! I was tested for MS , had an MRI done was negative, I dont know why yourDr would say you have MS that is detected by an MRI , sory to hear that .
Tests I had today ....
Ordered : Lytes ....sodium,potassium,chloride,Total CO2, Anion Gap, glucose random, urea, creatinine,glom filt rate...all normal
Total Protien...albumin...normal
Calcium... ca (corrected), phosphate , magnesium,amylase...normal
Bilirubin...Total Bilirubin , alk phos...normal
CBC...LKC,ERC,HB,HCT,MCV,MCH,MCHC,RDW,PLT,LYM#,MON#,NEUT#,EOS#,BASO#.....ALL NORMAL
ALT ,AST,CK,TROPONIN I ....ALL NORMAL
http://labtestsonline.org/understanding/analytes/cbc/tab/test
Ordered : Lytes ....sodium,potassium,chloride,Total CO2, Anion Gap, glucose random, urea, creatinine,glom filt rate...all normal
Total Protien...albumin...normal
Calcium... ca (corrected), phosphate , magnesium,amylase...normal
Bilirubin...Total Bilirubin , alk phos...normal
CBC...LKC,ERC,HB,HCT,MCV,MCH,MCHC,RDW,PLT,LYM#,MON#,NEUT#,EOS#,BASO#.....ALL NORMAL
ALT ,AST,CK,TROPONIN I ....ALL NORMAL
http://labtestsonline.org/understanding/analytes/cbc/tab/test
Is this a good reason that just maybe just maybe it copuld be Benzo w/d as its still common this far off verses Lyme
I am gng to still get the Lymes test done , I am just scared to get it and scared not too .
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