-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Sick for 15 years before diagnosis. Have been in treatment for 2 years. First drug combo was Zithromax/Mepron.
posted
been treating for 12 weeks, had symptoms on and off since 1986 but been worse for the last four years. been on doxy and artesunate.
Posts: 65 | From Sussex UK | Registered: Apr 2010
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posted
For those of you who replied to this post, how were you dx'd, given the length of time that you were ill? Oftentimes, the Western Blot test will show a false negative with chronic Lyme Disease.
The reason I ask is that I have been dealing with neuro symptoms since July 2002. I did have flu like symptoms in May of that year (and I do live in East LYME, CT). I now have numerous lesions on my brain, which my new neuro says is not typical of MS and she is trying to rule out "imitators", including Lyme Disease.
First neuro in 2002 kept saying he was going to test for Lyme but never did. Western Blot tests in 2007 and 2010 both came back negative. Have not seen details of 2010 test, but no reactive bands at all on 2007 test.
If this is Lyme, is there any way to get the bacteria out of hibernation to produce positive test results? I've read that a short course of abx can sometimes coax out the bacteria which can lead to a positive dx???
Are there any studies out there that show brain lesions can/will disappear after abx with chronic Lyme? If so, would much rather have dx of Lyme than MS!!
-------------------- Audrey Posts: 19 | From East Lyme, CT | Registered: Feb 2007
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posted
Who did the WB test? Was it IGeneX? If not, you might retest with them. Because there was a vaccine temporarily on the market that used two of the most specific Lyme bands, most testing leaves out these important bands. IGeneX does not.
I had a CDC positive Western Blot with IGeneX.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Symptoms for 27 years before diagnosis. Asked a local duck to super pretty please draw blood (well his lab in-office) so I could send it off to Igenex.
He agreed. When I first looked at the results I thought it showed negative. (I still knew I had it, though.) I looked closer (brain was BAD affected by Lyme at that point) and I saw it was barely IgM positive.
Called a local LLMD and basically begged him to see me. He didn't require a positvie WB test, just my history alone and my current symptoms alone could have given me a diagnosis.
I had just hoped I would have a + result because I was terrified he wouldn't see me without one. lol
Anyway. Been in treatment for almost 2yrs now. Doing TONS better, but still not 'well' by long shot.
SmurfyMom Congenital lymie, as are my kids, my brothers, my mom and her siblings, and we suspect my grandmother!
Posts: 155 | From Texas | Registered: Oct 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
4 months sick before treatment started - after going from healthy to a symptoms explosion after cortisone shots.
Been in treatment going on 4 years - still symptomatic.
Fist abx Amoxi then a couple months later Biaxin added.
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
It sounds like I'm very junior compared to the crowd. My symptoms started in Feb with dizziness and some GI issues. Then turned into vision / ear issues like inner ear. Looking back, I had a similar event in November which I ruled off as a stomach bug. And I now realize I've had random, odd muscle aches in my legs off an on since the fall that I thought were just cramps.
My joints are okay.
My Labcorp Elisa came out negative in March. Did 10 days of Amoxy in early April (1-10) and then had blood drawn for Igenex on April 14. I am IgM positive with bands 23-25,31, 34, 83, and 93. IgG negative. 31 and 34 mean I've had it at least a year, but symptoms were only for 4-6 months. No steroids. Suspect I got it in 2008 or 2009, but who knows. no rash or bite. MRI was "normal" except for suggestion of some atophy in parietal lobes. EEG normal. Brain spect, abnormal but no diagnosis (duh..I have Lyme.)
Hoping for a quick treatment, since I"ve only been symptomatic for a few months. But who knows.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
2007 Western Blot test was done by Quest Diagnostics. No detailed test results from most recent test; will have to find out. Probably Quest, because they appear to be the lab the hospital used for most of the other tests.
-------------------- Audrey Posts: 19 | From East Lyme, CT | Registered: Feb 2007
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posted
i for the last five years kept looking up my various symptoms on the net after having no joy with my gp, lyme kept appearing in the results. whatever i looked into always steered towards lyme being a possibility.
after getting nowhere here in the uk with our nhs system i found a private clinic that test for lyme by sending blood from the uk to igenex. My western blot with igenix was positive by their standards for igm but negative igg.(bands 18ind,34+,39ind,41++,93+) To back up these results blood was then sent to the melisa clinic in germany (www.melisa.org )where they tested again for lyme and also for co infections.
my lyme result with melisa was borderline but co infections were positive for bartonella, ehrlichiosis.
Posts: 65 | From Sussex UK | Registered: Apr 2010
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posted
Symptoms started in 1975, diagnosed in 1999. Igenx positive western blot. Still being teated, doing much better but forever chronic. Neuro lyme is my big problem.
Also I heard abx doesn't break the brain blood barrier, you must detox first. There is a great article on detoxing in "General".
Keebler , any opinions on this?
Posts: 161 | From midwest | Registered: Jul 2007
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I am not really sure. If the bouts of High blood pressure I had, the back pain, the preterm labor (it was stopped thank God, my 3rd child, other pregnancies normal), or the constant sinus infections, and bronchitis for the first time in my life had anything to do with Lyme then at least since 2004. My avalanche of symptoms came in December of 2009. Before that between April-Oct I lost 25 lbs, and had some other symptoms, but they were spaced out, and kept changing, I didn't like them together at first.
I got Dxed because I was lucky enough to know someone who already has lyme. My husband said maybe that's what it was so I asked my friend, and my symptoms mimic what her mom experienced in the beginning. Saw one doc she tested me I came up pos for ehriclia, but everything else negative. Put me on one month doxy, then dropped me like a bad habit because I didn't want IVs quite yet.
Found new LLMD who doesn't need tests but I wanted Igenex so am waiting for results now. He said walking textbook case of lyme. Again on doxy for now, but am going to ask for a switch at my next appt.
Still herxing and having really bad days every 33 days or so. But on a daily basis the pain is better then it was. I think I still have a long time to go though...
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I tested through Igenex and Fry Labs 18 years after my exposure. Was sero-negative by both CDC and Igenex standards, but with a few indeterminate bands on both IgM and IgG. With my symptoms, that was positive by my doc's and my standards.
Tested positive for Babesia microti and Baronella henselae.
Had no more Babesia symptoms after one year of treatment. Still working on Lyme, Bart, yeast.
posted
-How long did you have symptoms before you were diagnosed and got proper treatment?
Had stomach issues all last year... waved it off. graduated traveled the country working came back home and symptoms got so bad I couldnt function. Moved to New York in January for a new job which was hell... Thought I was going to pass out everyday. Found my first LLMD last month (April 2010) been in treatment one month and feeling much better! I know this is weird. Still have some symptoms but I can function again.
Stop abx this week to take a week off then retest. diagnosed 100% clinically never had a reactive band show up.
-How long were you on treatment (or have you been on) 1 Month
-What drugs did your doc put you on first? 1500 mg of amoxil 1 week then 3000 mg of amoxil teamed with probenecid after that.
Posts: 286 | From St. Louis | Registered: Dec 2009
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Symptoms started September '09. Started treatment in late January of this year. Been on Amoxicillin and Azithromycin, about to start 2 weeks of Flagyl followed by 2 weeks of Ceftin and Azithromycin
Not sure how long I've been infected. Tested Igenex AND CDC positive. No Bite or rash
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
i got sick 7 years ago, when i was 15, and i just started doxy about 6 weeks ago.
Posts: 220 | From Kansas | Registered: Mar 2010
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