Lymes question

[desperate199]

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

[desperate199]

Thank you Jackie, I will keep you posted , I was also wondering what your thoughts on the Negative test results I had from Igentixs for co-infections , do you think its a false negative even though they used the exact same blood work they tested me for Lyme? or it can possibly be a definate negative ?  I would appreciate your thoughts on this . I will keep you posted hun txs again xxxx

[JackieCalifornia]

Oh my, you really are going through a lot.  I am so sorry!  But good for you for continuing to pursue answers and solutions.  

About Lyme in the UK:  it really is there, just as it is in the US and elsewhere, but the National Health Service in the UK is like the IDSA here:  they don't want to believe it, so they don't.  A quick search for 'lyme disease uk' brings up many sites and articles.

Good for you for continuing to work on figuring out what to do and how to get better.  As complicated as Lyme itself is, it sounds like you are carrying even more issues.  I have not, in the years I've been posting here, seen anyone with a situation like you describe.  A quick google search on the subject of benzos and downregulation etc. as you mention brings up many things, some going back 20+ years, so the situation you describe is not new to the medical world, tho the docs seem in general to have difficulty too often in integrating Lyme with other symptoms and conditions.

I wish I had information to pass along, but you've mentioned Harris at IGeneX and Eva Sapi and others, and they are certainly the experts in the field as far as I know -- so it sounds like you are pressing ahead on all fronts already.

Best wishes to you -- let us know how you progress and what you figure out, okay?  

[desperate199]

Hi Jackie, no my friend said it dont sound like symptoms I have for Bartonella, ,or babesia, coinfections, she said I probably dont have any co-infections based on my symptoms. Yes, the Lyme testing came back Positive but co-infections was negative . Dr Harris from Igentixs told me taht it dont always mean you have Lyme it means I have been exposed to deer tick , but it does notmean its symptomatic, I am trying to figure whats what with me, as I menationed it takes 2-3 years to reupregulate Gaba receptors from the damage done by Benzos, Roico meationed in a previous post it shouldnt take 2-3 years to go through withdrawl from a medication , hes right it doesnt , but this is not withdrawl , I am not recovering from s/x off a medication this far out, my Brain has been damaged from medication from Down regulation of GABA , and it takes 2-3 years to upregulate GABA receptors to the orginal way it was meant to be. As Dr Eva Sapi took 3 years to recover from the same medication , that was way before she ended up with Lyme , as for her she had noticed a tick bite , so she never had Lyme while on or before or after that medication. I am just trying to rule everything out before I start dng treatment for something I have or dont have , I am only looking for all possibilites and as much information as I can, I dont want to add fuel to the fire sort of speak and cause more complications then I already have. Last week I had 3 good days in a row , not exact symptom free, but alot more managble then I had been in awhile, I was even eating carbs, had a few sweets and nothing happened I never got any symptoms intenify at all, was evn dng alot of physical things , no new symptoms ever ever appears , symptoms had always been the exact same , mostly nerve pain of every fiber is active , almost like I have small fiber neuropathy , its evry inch literally all over my entire body , mouth , nose, ears, eyes, sensative ares everywhere, its been coming and gng with intensity every day, I feel like I have inflammation all over every inch of my body , all tests came back normal as I posted my lab work I had recently , then its the bones feel like their swollen if that makes any sense, I go on the site where I was orginally for Benzo support group and I noticed people just off at the 2 years mark and experiencing just recently more intense symptoms and new symptoms as far off as I am , there are lots , a few from the UK , that never been exposed to Lyme in their arae at all is also dng badly this far out as I am, so I just dont know what to think is it Lyme or Benzos I am dealing with , or is it a syrinx I have in my neck , which I had an MRI done it is the exact same size it was in 2005 . Its called a syrinxomelia , something spelled like that.  

[JackieCalifornia]

Okay, so if I understand correctly, your co-infection tests all came back negative, but your IGeneX Lyme test is positive.

Your friend, the doc who had Lyme, doesn't think you have Lyme.  Did she say why she has come to that conclusion?

[desperate199]

IgG ...12.3 .....7.2-16.9
IgA...3.13-...0.69-3.82
IgM...1.04....0.63-2.77
C3 COMPLEMENT...1.11....0.88-2.01
C4 COMPLEMENT...0.32....0.16-0.47
CH50 COMPLEMENT TOTAL....>400...112-350 CH50 UNITS ....OUTER LIMITS >400
IgG SUBCLASSES
IgG1....8.20....3.82-9.29
IgG2...2.94....2.42-7.00
IgG3...0.42----0.22-1.76
IgG4....0.128...0.039--0.864

Out of all these test results it was only the CH50 Complement TOTAL was off (high

I had to repost it , all my lab work didnt paste from the first time I posted it

[desperate199]

RDW....13.4...11.5-15.5
WBC...7.6...4.0-11.0 X 10E9/L
PLATELETS...309...145-400X10E9/L
MPV...7.8...7.4-11.3
DIFFERENTIAL WBC'S
NEOTROPHILS  5.32...1.80-7.00 X1-0E9/L
LYMPHOCYTES 1.44...1.00-3.20 X 10E9/L
MONOCYCTES...0.61...0.00-0.80X10E9/L
EOSINOPHILS...0.08...0.00-0.40X10E9/L
BASOPHILS...0.08...0.00-0.02X10E9/L
CHEMISTRY...
HOMOCYSTEINE...8.....5-5.15