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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
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Ah, THAT Dr Harris.

He's right in what he says.  Everybody is different, and no one can diagnose you over the phone anyway.

Clearly there is something going on with you, and the trick is to find a doc who will walk through all the possibilities with you and do the tests that seem reasonable.  I know that doesn't give you any answers, but this is just a website and we're not docs.

Someplace like the Cleveland Clinic may be able to help, since they are well known for their expertise (and may be relatively close to you), or if you want to be sure it's not tick-related, think about going to NYC to Columbia University's Lyme research center.

Sometimes teaching and research hospitals are good places to go with complicated and mysterious ailments, but not always:  it depends on the docs themselves.

I agree with Rico above:  I wouldn't take only one of two prescriptions -- each one has a different purpose.  That may be one reason you are hurting all over so much.

About the bands and which ones mean what, there is some difference of opinion in the medical community, so if you've seen somewhere that band 18 doesn't mean Lyme, then that is someone's opinion.  If all this stuff were figured out already, we wouldn't be on a website trying to piece it together for ourselves, right?

Sorry not to be more help -- rather than try to freelance this yourself, I would keep looking to find an LLMD I could work with and felt comfortable with.  I went through 20+ docs before one of them finally tested me for Lyme, and once I had that test, I took it to an LLMD and got diagnosed also for a co-infection, then was treated for both.

I understand how awful and desperate you must feel, because I've been there, but rather than try to diagnose it yourself, I would in your situation find a doc I felt I could work with and go from there.  Taking bits and pieces of opinions from all over is not going to give you usable answers, because unless you're a doc, you don't have the background to integrate it all into an action plan.  

We all wish you well --
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thank you very much
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Was woundering your thoughts >>>> \When Igentics do a Lyme test are they measuring the Chemical in our brain/body, what is it their actually measuring any thoughts on this? Do anyone here have just nerve, neuropathy only with the Lyme? thank you
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To my understanding, IGeneX can run the standard Western blot/ELISA combo test, but many docs use LabCorp because they are comfortable that it is reliable.

What IGeneX can do (that other labs can't) is a PCR test that looks for Lyme bacteria DNA in the blood and not your immune system reaction to Lyme bacteria (which is what W.blot and ELISA look for).  Therefore the PCR is a direct test; W.blot and ELISA are indirect tests and are less certain.

I think of it as looking for a burglar in your house:

Western blot/ELISA will show you a stranger's footprints on your carpet, but PCR will give you a photo of the burglar standing in your living room.

[Anybody, please correct me if I'm wrong here.]
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... and to your other question:

some people get more nervous-system involvement from Lyme than others do.  

Depends on the strain of Lyme, on your own immune system, and on the interference from other infections (babesia, bartonella, etc.) that you may also have, as well as possible other factors.
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This is the latest test I did suggested by Dr Harris from Igentixs

Note: If a patient’s Western Blot is positive by either IgM or IgG and has only
bands 31 and 41kDa, there is a chance that it is a false positive due to presence
of antibodies to viruses or other spirochetes. Therefore, confirmation of band
31kDa is recommended – Test 488 for IgM and Test 489 for IgG. Addition of this
test improves specificity to greater than 97%.

Code 488 is the one he suggested
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1530171 tn?1448133193
Jackie you are right on ...well almost.
The photo proving that the burglar has there was actually generated
by amplification (making millions of copies) of his small DNA sample, found on the beer bottle. lol!
"POLYMERASE" is the enzyme  involved in the DNA duplication when a cell divides.
The duplicated DNA in the PCR testing is used as a template,
for mass replication, starting a "CHAIN REACTION" that will produce-thru multiple stages- millions of  DNA copies, useful for identifying, difficult to detect micro-organisms.
This PCR testing alone, sets IgeneX apart from other labs for effectiveness and accuracy.

Neuropathy and other neurological involvement would be impossible
to attribute directly to LD, in the presence -or just suspicion- of other
co-infections or conditions.
LD, the great imitator, can really complicate one's life, by mimicking any
disease-or just about.

On a different note, this thread is getting too long.
Could someone please start a new one, where this can
be continued?
Take care.
Niko





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Laboratory testing

Several forms of laboratory testing for Lyme disease are available, some of which have not been adequately validated. The most widely used tests are serologies, which measure levels of specific antibodies in a patient's blood. These tests may be negative in early infection, as the body may not have produced a significant quantity of antibodies, but they are considered a reliable aid in the diagnosis of later stages of Lyme disease.[83] Serologic tests for Lyme disease are of limited use in people lacking objective signs of Lyme disease because of false positive results and cost.[84]

The serological laboratory tests most widely available and employed are the Western blot and ELISA. A two-tiered protocol is recommended by the Centers for Disease Control and Prevention (CDC): the sensitive ELISA test is performed first, and if it is positive or equivocal, then the more specific Western blot is run.[85] The reliability of testing in diagnosis remains controversial.[3] Studies show the Western blot IgM has a specificity of 94–96% for patients with clinical symptoms of early Lyme disease.[86][87] The initial ELISA test has a sensitivity of about 70%, and in two-tiered testing, the overall sensitivity is only 64%, although this rises to 100% in the subset of people with disseminated symptoms, such as arthritis.[88]

Erroneous test results have been widely reported in both early and late stages of the disease, and can be caused by several factors, including antibody cross-reactions from other infections, including Epstein-Barr virus and cytomegalovirus,[89] as well as herpes simplex virus.[90] The overall rate of false positives is low, only about 1 to 3%, in comparison to a false negative rate of up to 36% using two-tiered testing.[88]

Polymerase chain reaction (PCR) tests for Lyme disease have also been developed to detect the genetic material (DNA) of the Lyme disease spirochete. PCR tests are susceptible to false positive results from poor laboratory technique.[91] Even when properly performed, PCR often shows false negative results with blood and cerebrospinal fluid (CSF) specimens.[92] Hence, PCR is not widely performed for diagnosis of Lyme disease, but it may have a role in diagnosis of Lyme arthritis, because it is a highly sensitive way of detecting ospA DNA in synovial fluid.[93]

With the exception of PCR, there is currently no practical means for detecting the presence of the organism, as serologic studies only test for antibodies of Borrelia. High titers of either immunoglobulin G (IgG) or immunoglobulin M (IgM) antibodies to Borrelia antigens indicate disease, but lower titers can be misleading, because the IgM antibodies may remain after the initial infection, and IgG antibodies may remain for years.[94]

Western blot, ELISA and PCR can be performed by either blood test via venipuncture or CSF via lumbar puncture. Though lumbar puncture is more definitive of diagnosis, antigen capture in the CSF is much more elusive; reportedly CSF yields positive results in only 10–30% of patients cultured. The diagnosis of neurologic infection by Borrelia should not be excluded solely on the basis of normal routine CSF or negative CSF antibody analyses.[95]

New techniques for clinical testing of Borrelia infection have been developed, such as LTT-MELISA,[96] although the results of studies are contradictory, and there is no study assessing the diagnostic sensitivity and specificity of the test.[97] Others, such as focus floating microscopy, are under investigation.[98] New research indicates chemokine CXCL13 may also be a possible marker for neuroborreliosis.[99]

Some laboratories offer Lyme disease testing using assays whose accuracy and clinical usefulness have not been adequately established. These tests include urine antigen tests, PCR tests on urine, immunofluorescent staining for cell wall-deficient forms of Borrelia burgdorferi, and lymphocyte transformation tests. The CDC does not recommend these tests, and a 2005 review by Aguero-Rosenfeld, et al. in Clinical Microbiology Reviews stated their use is "of great concern and is strongly discouraged".[92]

In addition to laboratory testing on patients, ticks can be tested after removal from the host. Several laboratories perform PCR testing on live or dead ticks for a panel of tick-borne diseases, including Borrelia, Babesia, and Ehrlichia.[100]


This mentions abt the PCR testing it also can be flawed , also I read that the Western Blot also can show as a false positive to other infections ,

Erroneous test results have been widely reported in both early and late stages of the disease, and can be caused by several factors, including antibody cross-reactions from other infections, including Epstein-Barr virus and cytomegalovirus,[89] as well as herpes simplex virus.[90] The overall rate of false positives is low, only about 1 to 3%, in comparison to a false negative rate of up to 36% using two-tiered testing.[88]

I had a Cold sore at the time of testing , it meantions abt Herpies 1 and 2 , can give a false positive
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http://en.wikipedia.org/wiki/Lyme_disease
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http://www.marioninstitute.org/biological-medicine-network/resources/videos/dr-thomas-rau-lyme-disease-talk
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Labcorp CD57 test results verses Igentics CD57 , are they both compadiable for the CD57 Results or should we just have the test done Igentics , I had my CD57 done by Labcorp are they as effective
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dorment yes i think so..
i went off medication end of june last year by end of july my stabbing bone symptoms started.

i had a bug bit that was an pea size bull eye, no sickness, didn't spread.. black fly i thought.. then hubby got tick bit rash fever in july.

so iwas either .. it was a tick on me, or a dorment thing,as my immune system dropped when i went off the meds..

or i got it from hubbys sperm? oral sex?

IDK but this is all ridiculous  conspiracy at this point.!
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My recent Lab work I had done ....

These are my latest test results I had done with in the past 2 weeks...I had to  FAST
Glucose serum Fasting...4.6  Normal range 3.6-4.6
CRP ...60 ...normal range  50-100
eGFR .....>90 ...normal >60
Bilirubin.12 ,,,normal..<23
sodium...139...nor..135-45
potassium...4.2..nor 3.3-5.1
chloride...102...95-108
alkaline phos...66...35-122
ALT...18....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)

And I just got my recent test results back from Igentixs for CO-INFECTIONS , I had the New complete panel co-infection test done , it came back NEGATIVE , they used the same blood sample I sent them for testing of Lyme and the Lyme came back Positive , but Co-Infections came back NEGATIVE , all my other test results above were done by my Family Dr , all came back Normal except the CH50 complement total, I am not sure what to think of these tests results , anyone understand the CH50 Complement total testing , I guess the Tests coming from Igentixs being Negative for c0-infections is a Positive thing as it was the same blood work they used for testing for the Lyme , and that came back positive , so the c0-infections testing must be accurate right ? I would appreciate any thoughts , thank you .

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About half of those who test positive for Lyme do not test positive for co-infections, so yes, it is possible.

Do you know which co-infections you were tested for?
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Yes, some people have to repeat the tests for co-infections several time. My Babesia took 3 tries, I knew I had it from drenching sweats and air hunger.
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test was for BABESIA MICROTI  IgM <20 NEGATIVE    IgG 160 IS NEGATIVE

EHRLICHIA ....SAME AS ABOVE

A.PHAGOCYTOPHILUM ...SAME AS ABOVE

BARTONELLA HENSELGE ...SAME AS ABOVE

Jackie when you said Yes it is possible , do that mean its possible I DO NOT have co-infections ? I speak to a friend of mine on the phone she was a MD , she had Lyme , and is very knowledgable abt Lyme , she told me that it does not sound like any of my symptoms are related to Borteilla , she said it dont even sound like I even have any co-infections based on my symptoms .
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test was for BABESIA MICROTI  IgM <20 NEGATIVE    IgG 160 IS NEGATIVE

EHRLICHIA ....SAME AS ABOVE

A.PHAGOCYTOPHILUM ...SAME AS ABOVE

BARTONELLA HENSELGE ...SAME AS ABOVE
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test was for BABESIA MICROTI  IgM <20 NEGATIVE    IgG <40 negative
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My lab test was IgM was <20 , and IgG was <40 for all the co-infection tests listed above
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These are my latest test results I had done with in the past 2 weeks...I had to  FAST
Glucose serum Fasting...4.6  Normal range 3.6-4.6
CRP ...60 ...normal range  50-100
eGFR .....>90 ...normal >60
Bilirubin.12 ,,,normal..<23
sodium...139...nor..135-45
potassium...4.2..nor 3.3-5.1
chloride...102...95-108
alkaline phos...66...35-122
ALT...18....< 36
Hemoglobin..150....115-155
hematocrit...0.45...0.33-0.45
RBC...4.69...3.60-5.01 X 10E12/L
RBC INDICATES....MCV...96....80-99
                            MCH...32....27-32
                            MCHC....333...320-360
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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
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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
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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?
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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.  
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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?  
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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
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Jackie can Lyme cause degenerative changes in our spine in such a short time, cause disk bulging , etc.... or can it just be normal wear and tear of our back? txs hun , also


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
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Unfortunately I haven't done any reading on spine problems from Lyme -- it does like to live in cartilage and other areas of blood flow, but perhaps someone else here can speak to that point.

If I understand your question correctly, I don't think the different tests IGeneX ran on your blood would affect each other -- when blood is drawn for different tests, the tests are run on different samples of the blood, not all mixed together, as I understand the process.  Therefore the results would not depend on what the other tests were.  Does that make sense?
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Glad most of your blood work is good. That is a very good sign. But it doesn't mean much in regards to whether or not you have Lyme. It is very unlikely that an IGeneX positive would be a false positive. (You can't put much into what Dr. H says over the phone as he can't examine or diagnose you. He can only speak in generalities. You are not a generality. You are a specific individual with your own history and symptoms.) )

That is a very good sign that you tested negative on coinfections. Lyme is easier to treat without any coinfections. And if your MD friend who knows Lyme well says you don't seem to have symptoms of coinfections, that is also a big plus.

From my understanding, Babesia and Bartonella are the two most likely coinfections to produce a false negative.  They can be "hidden" until some time into Lyme treatment when they flare up and show symptoms. Many people have initially tested negative for either of these and then later, tested positive.  Even the CDC acknowledges that Babesia is hard to find in lab tests. And a national expert on Bartonella at North Carolina State is working on a new culture test because Bart is known for false negatives.

I was lucky. The only evidence I showed of Bart was a lot of neuro Lyme symptoms, lots of GI problems, and anxiety. All can be attributed to Lyme, so I am glad I showed up on the b. henselae test.

At this point, you can set the issue of coinfections aside. If you proceed with Lyme treatment and a few months in find some new symptoms consistent with a coinfection, them definitely get retested.  Otherwise, just say "Whew, dodged that bullet."

You do have the complexity of recovering GABA receptors. I would guess that Lyme is somehow complicating your presentation because of that. You may never find a doctor who can tell you how Lyme behaves in a person with this issue, as there might not be any others out there just like you. That is one of the tricky things about Lyme, everyone has their own unique history and presentation.

Knowing how Lyme just gets worse over time (in spite of short term variations in symptoms), I would encourage you to go with the positive Lyme results and start treatment. I don't think you can compare yourself to other Benzo patients anymore as you are different. You show Lyme antibodies.

I did notice that your general immune system numbers (esp the IgG counts) are on the low end of normal. That was true for me, too. An allergist/ immunologist ran these basic immune tests on me as I was headed downhill with weird symptoms last year, and he pronounced my immune system "stone cold normal."  We'll, in hindsight, I realized that "stone cold suppressed" was a much more accurate description.  Both Lyme and the short courses of prednisone I had previously been given were suppressing my immune system.

Hang in there. I remember when I was also in that stage of wondering if I really had Lyme and whether or not to jump into the deep end of treatment and the costs associated with that. It can seem daunting. But as someone who has been there, I can only say how glad Zi am to have made the decision to go to my LLMD and get treated. I can finally see the light at the end of the tunnel and know I am really going to feel good again, soon!
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And I forgot to mention, if you Google "Lyme syrinx" you will see other cases of links between Lyme and a syrinx. (I saw a patient"s post about Lyme-like symptoms and a syrinx on another message board before.)

Also, I have seen many anecdotal stories about Lyme patients who developed degenerative discs (or worsening discs) after getting Lyme. There does seem to be a connection.  Lyme is well known to like low oxygen environments, especially connective tissue, and spinal discs are indeed connective tissue.
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thanks , I am struggling to know what treatment to go with, I ordered samanto and found there's a link to quinolones , that can cause tendon damage , it's derieved rom the same plant , I am so scared , every day the pain is getting worst , I am gng out of my mind with this pain , my LLMD appointment is not until the end of November that's thevearliest , by then it will be too late the damage will be done permanently, I have a lot of severe nerve pain
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What do I do in the meantime waiting to get my appointment , any suggestions , I tried the doxy for two weeks , the stingig was getting worst , it's in my mouth , ears, nose ,eyes ,it's everywhere literally , it's always triggered by any stimulation is that a Lyme symptom , what else do I do
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I am so sorry... I have no idea what to suggest for you given your nerve pain. Did you ask the LLMD's office to put ou on a cancellation list to try to get in earlier?  Call them and tell them about the pain and ask what they recommend that you do. Hopefully, they'll be sympathetic.
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A suggestion:  magnesium supplements.

I just searched

                   magnesium nerve pain

and got a fair number of links.  I found magnesium to be VERY helpful with the aches and pains of Lyme etc.  There is a lot of junky magnesium on the market, and I read to look for any variety that ends in "-ate", because it is most absorbable.

For example, magnesium malate or aspartate or orotate or citrate.

I take a variety called "Magnesium CAO", which is short for citrate, asparate and orotate.  It works well for me, but everyone's body chemistry is different.  

Lyme uses up magnesium in the body, and that lack of magnesium can lead to muscle and joint aches and pains.  Others here have also used magnesium supplements, and the higher the quality, the better .... meaning, get a good brand, not just whatever is cheap.

Hope you feel better.  Let us know how it goes, okay?
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1530171 tn?1448133193
Hi!
I haven't been around lately. Extremely busy!
Best way for magnesium supplementation, superior to any other method
and without any digestive issues, is Transdermal Magnesium using "Magnesium Oil".
Magnesium oil, made from MgCl (magnesium chloride) flakes and hot water 50-50. Place in plastic spray bottle when cooled down and spray all over body and rub. Avoid sensitive areas as it might sting a bit.
Leave on for 20-30 minutes and then shower.
Great way to supplement, feels good and also pain relief remedy.
Do daily for a couple weeks to build up Mg stores, then do every other day."
Cheers!
Niko
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(Magnesium capsules are easier and work fine for me.)
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I read an article abt Healing Lyme by Vitamin C and Salt, also in that article I also read taht anyone having Lyme or any infection for that matter that their WBC is usually elavated , which is almost always possible as thats the way the body fights off any infection and increase of WBC , is that correct? Well, if so I was looking back at my Lab work before Benzos and after , it has always been in the Normal range , it has never been elavated , theres has to be some indication in our blood work that would indicate theres something gng on in our bodies if we are dealing with Lyme , it just dont make any sense especially if its an active infection right?
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Not always. My WBC level became chronic low this past winter.  

Prior to this past winer, my WBC was in normal range so too other CBC counts, but I had Lyme for 10+ years.

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This don't make any sense, if we have an infection our bodies should show some indication through our blood work, if someone had west Nile virus, syphliss, HIV, all other infection it's Hunan nature it will show something out of the ordinary in our lab work, this don't make sense , then maybe Lyme is over rated and it's has nothing to do with Lyme and there's something else gng on besides Lyme or neuro transmitters Are off?? It's an infection in our bodies if it's Lyme ,they say people take abx for long term and start to feel good ,but when they come off it they are sick again, maybe it's because of the abx s/x and nothing to do with Lyme ,I am confused
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1763947 tn?1334058919
Lyme can hide in its bio film and lay dormant for years like mine did. I was bit 20+ years ago, was sick but not enough to stop working,my blood tests were normal.  I had constant low grade fever but it wasn't until 2 years ago that I became very ill and all my blood tests were out of whack. I was in Texas, then, for 2 years, where Lyme doesn't exist (ha) so nobody could figure out what was going on. I knew I had Lyme but nobody believed me. I had to move to FL and see an LLMD who tested me with igeneX labs to get positive results for Lyme and 2 co-infections.
If you don't continue with treatment before you are cured, the bugs can go back in their biofilms and hideout for some more time before showing themselves again.
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I am much like mojogal, I was sick since late 90's but well enough to work, to socializing, etc..until two years ago.

As for sick again due to abx side effects?

It still doesn't explain why they got better while on Abx.

For instance I had chronic skin slough off, peeling off, and atrophy of skin problems for ten years. I was tested negative for fungal infection, for autoimmune diseases, and for typical bacteria infections.  None of dermatological medications worked.

Then all of suddenly on Rocephin IV--it all went away.  It even impressed my dermatologist.

Now Rocephin has no immune modulators components to it, thus it does not affect immune system itself, let alone autoimmune diseases.  Rocephin also does not affect fungus.

What Rocephin does affect is bacteria with cell wall. Rocephin is cell wall inhibitor. In other word, It sort of  stripe the cell wall out of bacteria so it'll die.

So obviously I am infected with some kind of bacteria that does not show up on routine labs work.  

My dermatologist do not have any other explanation.  

When Rocephin IV was discontinued after 4 weeks, some of same atrophy symptoms of skin came back a litte. The logical explanation is infection has not been eradicated completely.

Borrelia and bartonella, few others are known to put blinders on the immune system so it does not see there are unwanted bugs in the host's body, thus no signs of "infection" in lab workup until infection works it way deeper and deeper into body.

The words what we know about Lyme disease complex is same as what we know about HIV 20 years ago...Science is way behind.
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1763947 tn?1334058919
Very well said!
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Your question about how we can show normal results on blood tests that generally show signs of infection is a common assumption about the human body: that our immune system will always act a certain way when we have an infection.  Many doctors believe the same thing because that's what they were taught.

But that is just an assumption, not a proven fact. Just like it was an accepted "fact" taught in medical schools for decades that bacteria could not survive in the stomach. It was 17 years between when Dr. Barry Marshall announced his discovery of h.pylori as the bacteria that causes stomach ulcers and when the Royal College of Physicians in Australia (the country where he made his discovery) recommended testing for h.pylori in patients with suspected ulcers.  Dr. Marshall was ridiculed and dismissed for years. Now he has a Nobel Prize for his work.

Note: there are still some old timer doctors who prescribe antacids for suspected ulcers and advise their patients to avoid stress, even though it has been over 25 years since it was demonstrated that 2 weeks of abx cures most ulcers.

And there's also the example of Mad Cow Disease. Most doctors believed an infection could only be caused by a living organism, including viruses, bacteria, parasites, and fungus.  The doctor who proposed that a rogue protein could replicate in the human body and cause disease was dismissed as a crank. And yet this theory was proven right in what is now known as Variant Creuztfeld-Jacob Disease

Borrelia is not like any other bacteria we have seen before. And yet so many doctors who continue to assume that their beliefs are facts rather than assumptions refuse to consider that a human can have a chronic infection and not show expected signs of it. But Borrelia has been observed doing some amazing things, like suppressing the immune system and hiding out in places the immune system can't find it, only to reemerge later after the immune system stopped making antibodies for it.

There are some bold researchers who are now convinced that underlying, undetected infections are most likely responsible for Chronic Fatigue Syndrome, Multiple Sclerosis, and some other (if not all) autoimmune disorders. (Read about MS and the Faroe Islands to see how an infectious condition could be the root of MS.)

Assumptions (or expert opinions) mistakenly seen as "fact" can result in a lack of progress in scientific fields for decades. There are examples in history, archaeology, medicine, physics, and other fields. It is a human failing not restricted to medicine to adhere to what we were taught even when evidence shows up to contradict it.

With only two exceptions, every blood test I took was completely "normal" right up until I was hospitalized because I was so incredibly sick. (My exceptions are a persistent slightly below normal eGFR on my kidneys and a slightly high TSH on a thyroid panel when I was really sick.)

My WBC count was always normal, as were my general immune function tests. I was also normal on my RBC counts, on my pulmonary function tests, and in a chest x-ray even though I couldn't take a deep breath and was so breathless when talking, people had trouble understanding me. And yet zi had two neurological infections rampaging through my body causing horrible symptoms and illness. (Lyme and possibly also Bart are impeding the signals to my breathing muscles. I am just glad they weren't blocked completely, otherwise I wouldn't be here anymore!)

You can see why so many doctors were stumped in trying to figure out what was going on in my body. They were all operating on their mistaken assumptions that my test results would show expected signs of an infection if I had one. Well, finally an IGeneX Western Blot and a b.henselae test did.  

I think Max Planck was right on the money when he said:

“A new scientific truth does not triumph by convincing opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it. ”
― Max Planck

I sadly suspect that it will take an entire generational turnover in the medical field before we have widespread understanding and acceptance of tick borne diseases. Until then, we sufferers of tick borne diseases have to look out for each other, as most of the doctors out there will not.


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1763947 tn?1334058919
This difference, my out of whack blood tests and others normal blood tests are what is causing most doctors to be stumped by all that Lyme and co-infections can do to an individual.
If we could make docs understand this point and take us seriously and the CDC changing their Lyme guidelines, then we might get somewhere.
I often wonder if I was able to get Lyme/Bart's/Babs treatment earlier, while in Texas, I wouldn't be so sick now.
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Brilliantly said, Rico.
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can you please contact me. I am exactly the same as you. Electrcial stinging over my entire body.. to the point of screaming..
732-752-4485 I hope you read this..
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Welcome to MedHelp Lyme --

Unfortunately the person who started this chain of messages three years ago has not posted for quite a while, so s/he may not see your inquiry.  You could try sending a private message through this site, but it may not go through after such a long time.

Also, the rules here do not allow posting of addresses or telephone numbers, so do not be surprised if your message above is removed.  

You could instead post a new message at the top of the page with a short statement of your current symptoms and any treatments or diangnoses you have had, and then those who are reading this page currently could possibly have suggestions for you.

Sorry you are suffering!  You are in good company here, however, and encourage you to post further.  All good wishes to you --
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Is there any way you can contact me , I am going through the exact same thing, I am at screaming level with this electrical sharp all ove the body stinging, I had the electrical sensations like lightening through me too.. I really need to talk with you..
732-752-4485 the other day I could not hold. I could not hold one more second I was screaming as I do everyday.
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do your rashes look like an insect bite but are not and then turn large white welts?
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Have you considered seeing an immunologist?  My Lyme doc was an immunologist by training, and that background and experience can give the doc an edge in figuring out your ailment.  Best wishes -- keep us posted!
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