map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
April 04 Ingenex
Band 30
IgM+/- (with 10 other bands between +++ and +/-)
IgG-neg along with all other bands
Neuro sx strong at testing. Last 6 months nearly no neuro sx.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by AliG: TRUE!!!!
You even throw up your test band in a different manner than is usual. Who starts out with 34 & moves to 35? Don't you know you're supposed to get 41 and 23 early on! You must've missed too many days of "band practice"
Hey LLMD said they were having success with Suprax in Europe when he put me on it. Maybe that's why you found it helpful?
I asked LLMD about what happened to me on it. Wouldn't you know it Cephalosporins can cause a weird panic attack-like thing in about 1% of the population.
You're not the only odd one!
Ha! It took me 2 years to get a band 41! I had been treated and relapsed and was being retreated by then. Hmm... (It took over 3 years to get a 23-25.)
I went from 34 to 35 + 57 to 35, 41, 57, 60... All from BBI NorthAmerican
Ali, about the Suprax, it made me feel good and I could tolerate it. (Big bonus in my book!) But on it's own, I did backslide, in time. It was a reasonable maintanence ABX for me.
I did make headway taking it with Zith.
Afterwards, I just used it when I was starting to slip. It was mt fall back ABx like a lot of people use Doxy (I can't tolerate Doxy except in the Doryx form and relapse quickly on it).
Cephalosporins(sp?) work on Lyme but not coinfections (eg. Babs) so...
As for European vs more local strains, my opinion is it's all mixed up anyway. People travel, birds travel, (for cripes sake, deer swim ) because some strains are more prevalent in some areas is irrelevant, you could get anthing anywhere. Oh, yeah, that part is just my opinion but I'm pretty sure the thing about deer swimming is true.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Igenex band 30 IGM positive/ IGG negative -- I'm almost all neuro and I think I probably got bit in Eastern Europe in 1992.
I'm CDC negative.
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Wow, interesting!
OK Pam, everyone here wants to know what you've been doing the last 6 months, who you work for & what you're gonna try to sell us!
Seriously though, have you still had other symptoms over the past six months, but no neuro Sx? If so, what type are remaining?
How long have you been Txing?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
My original IGeneX WB band 30 + on both IgM and IgG.
Lots of neuro involvement believe I was still suffering from Erlichiosis-encephalitis at the time of this test.
Retest after 6 mos of abx Band 30 IgM ++ and IgG IND Now know I have Babs too.
I love the "We don't buy duck"!! Perfect!
Suggestion for the next question to ask when you tabulate results. "How many of the band 30 folks with neuro involvement and + or +/- were originally given doxycycline?"
Good post! Interesting. Please keep this open. Others please push to top. Thanks!
Posts: 422 | From Luck home | Registered: Sep 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
anyone else going to join the 30 club?
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Since bands 30-32 are all OspA, could they all be causing neuro symptoms?
I see that only band 30 is a "substrate binding protein" (whatever that means)of the three OspA bands. I'm wondering if that makes a difference?
Posts: 1302 | From USA | Registered: Dec 2002
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Forgot to mention I got lyme in Germany and am negative for band 30, but IND for band 31 and do have neuro symptoms.
Posts: 1302 | From USA | Registered: Dec 2002
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Forgot to mention I got lyme in Germany and am negative for band 30, but IND for band 31 and do have neuro symptoms.
Posts: 1302 | From USA | Registered: Dec 2002
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
IgM and IgG + I don't have much neuro stuff.
And, Zil, I'm sure the number of + indicates band intensity. I have all the way from - to ++++ on mine ( 4+ for 31 kDa, 3+ for 34)
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi all,
I have an IND on band 30 on my IgM, nothing on my IGG. My son is IND on band 30 on both IgM and IGG. Our tests were done through IGeneX.
We both have neuro symptoms and Babesia, with some joint pain tho.
Hugss to all..
[ 27. August 2007, 11:39 AM: Message edited by: Beverly ]
Posts: 6641 | From Michigan | Registered: Jun 2001
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I have babesia and have mainly neuro symptoms. I suspect bart too, but don't know for sure.
Posts: 323 | From Michigan | Registered: Sep 2006
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First test had 9 pos. bands igm second test had 41 ind and thats it.
Still sick, and do have some neuro sx
Posts: 413 | From nj | Registered: Nov 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I can't say what finally cleared my neuro sx. I've been doing many different alternative treatments for over 4 yrs.
Yes, I continue to have pain. Joint, bone, muscle and soft tissue. Some days controlled, some days not. I still have low energy. If I control my life and activity I can control my fatigue.
If I over do it I can recover from that fatigue in a couple days. Fatigue is no longer cripling me.
Brain fog, twitching, creepie crawlies, electric shocks are gone. If I go into a fog it's gone in minutes. Used to be, I stayed in fog 24/7 and would only come out of it for minutes every once in a while.
Zero abx in 4 yrs.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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In treatment 10.5 months, getting better, but started having joint pain, numby toes and ankles.
Doc says neuro related, but will go away.
Posts: 158 | From PA | Registered: Oct 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by pmerv:
IgM and IgG + I don't have much neuro stuff.
I just want to clarify, both + for band 30, right?
What are your symptoms mostly?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Band 30 IGM negative, Band 30 IgG ++ Positive. I was also positive IgG positive by CDC.
I have severe neuro issues with myoclonus, twitching, seizures, vertigo, vision, etc.,
I'm under the impression however that many of my neuro issues are bartonella related. I had a situation where ferrel cats took over my backyard for upwards of a year.
It was after that time that I got really ill. I think the constant cleaning up after them (never got close enough to get scratched) might have put me in a position to have gotten bit by some of their fleas.
Also visited Europe (Ireland, London, Paris) one month before I got very ill. I honestly don't believe I got ill over there.
Looking back I think I had symptoms going on for a few years (bells palsy 03) and then in July 05 two months after my Europe trip I took a 10 day course of prednisone and all of my lyme symptoms and coinfections let loose.
It then took one full year 15 Dr.'s and $80,000 in insurance monies to get a diagnosis of lyme and Erlichlia. Barb in San Francisco
Posts: 281 | From san francisco | Registered: Jun 2006
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bettyg
Unregistered
posted
IgG 30 indeterminate (+/-) IgM 30 negative
Neuro since day one, with strong joint involvement
posted
I only had IGM drawn (Igenex). 30+, 39 IND, 41 IND. I have horrible neuro symptoms...weakness, numbness, tingling, twitching, burning nerve pain, MS type symptoms with all normal neuro testing. My bullseye rashes were in 1992.
Posts: 340 | From Ohio | Registered: Oct 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
HUbby negative on band 30. Only neuro symptoms now.
Posts: 1366 | From Southeast | Registered: Sep 2005
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re-tested band 30 IgM after one month on Zithromax still +.....
Severe Neuro & CNS symptoms...main complaint....
Babs test neg. (panel from IGeneX)...but LLMD strongly believes I have Babs...possible Bartonella too...never tested for Bart.
Never in Europe...or sex with with European
Bullseye rash in June 2004
Fawne
-------------------- Energy flows where attention goes~ Posts: 302 | From Kauai | Registered: May 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Ali-
hope you don't mind if i post this-
i asked Dr. J about the significance of band 30. he said it used to be a primarily European strand, but that was as long as 20 years ago.
Also, he doesn't think there is a direct link to band 30 and neuro-Lyme.
There is some disagreement whether or not 30 may be a "31 waiting to happen;" in his opinion, not.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Not at all Dilly! When you had told me what he said I was going to ask you to post your input. I guess I must have forgotten what I was thinking.
Thanks for sharing!!
I had lost this thread & even forgot what I called it , so thanks for pulling it back up again!
The other thread with all the links to the different band descriptions might be helpful right about now, I'll have to see if I can find it. My DD cave me her nasty cold, so don't count on me finding it today.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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-------------------- Adversity is the diamond dust heaven polishes it's jewels with. � Robert Leighton
Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time � all faiths welcome! Posts: 309 | From S.E. Mass | Registered: Apr 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Wow, makes perfect sense. My daughter had band 30 and 41 when tested two years ago.
She is, at this moment, reading a book and bouncing her leg up and down to beat the band. Neuro all the way.
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) because some strains are more prevalent in some areas is irrelevant, you could get anthing anywhere. Oh, yeah, that part is just my opinion but I'm pretty sure the thing about deer swimming is true. ![[Big Grin]](biggrin.gif)
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