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Posted by AliG (Member # 9734) on :
 
A few of us are trying to determine if Band 30 = more aggressive CNS/neuro symptoms.

If you're positive on band 30 please tell if your symptoms seem neuro/CNS heavy or otherwise.

Note: IND is acceptable for this survey(we don't buy duck), but please state POS or IND. [Big Grin]

Also, please make a note if you have known co-infections in case they may affect the symptoms.

One more request: please also note if you've travelled to Europe, (since it can be STD, you may want to say you've travelled if you don't recall a bite but had sexual contact with a European, I don't need to be that specific [Roll Eyes] [Big Grin] )

Thanks in advance, all replies appreciated!!! [kiss]


-----------------------------------------------
Tally:

# of Responses: 15

IgG 30 POS/IND: 11
IgM 30 POS/IND: 10

++NEURO = YES: 14
++NEURO = .NO: 0


.CO-BABESIOSIS: 8
.CO-BARTONELLA: 2
CO-ANAPLASMOSIS: 1
CO-ERLICHIOSIS: 1
CO- RMSF: 1
CO-MYCOPLASMA: 1

European Travel: 2

[ 24. August 2007, 11:11 PM: Message edited by: AliG ]
 
Posted by AliG (Member # 9734) on :
 
I'll start!

me IGG 30 pos = [dizzy]

I have Babs too.

In Europe 1978 & 1984

[hi]

[ 24. August 2007, 11:16 PM: Message edited by: AliG ]
 
Posted by northstar (Member # 7911) on :
 
Would you want to specify both IgG and IgM results?

And what about clinical vs. lab dx vs. therapy response for co-infections?

N/
 
Posted by AliG (Member # 9734) on :
 
quote:
Originally posted by northstar:
[QB] Would you want to specify both IgG and IgM results?

OK but those not using IGenex would likely only have IgG results for band 30. I know Quest only reports 3 bands for IgM. Not sure if that's really pertinant to band 30 reflection on neuro symptoms.

quote:

And what about clinical vs. lab dx vs. therapy response for co-infections?

Is that an entirely different topic than the band 30?

I'm not understanding what you're asking me. Sorry. [Frown] Is it in relation to this thread?

[confused]
 
Posted by Michelle M (Member # 7200) on :
 
IgeneX IgM band 30: IND
IgeneX IgG band 30: IND
Babesia WA-1 positive by Sonoma County

All neuro person,

Michelle
 
Posted by Michelle M (Member # 7200) on :
 
quote:
Originally posted by AliG:
Is that an entirely different topic than the band 30
[confused]

Seems unrelated, but might prove to be interesting since babesia in particular features neuro symptoms.

Michelle
 
Posted by AliG (Member # 9734) on :
 
Thanks Michelle!

My theme song for the day....
"I'm just a ball of confusion" [dizzy]
[lol] It looks like one of those days for me. [Roll Eyes]
 
Posted by Michelle M (Member # 7200) on :
 
Daughter Georgia, 15, CDC positive by IGeneX but negative for coinfections. Neuro involvement, Bell's Palsy, also muscular/knee problems.

IgM band 30: IND
IgG band 30: IND


Michelle
 
Posted by Sojourner (Member # 9424) on :
 
Two daughters: Igenex results

10 yr old---IGG 30 +
15 yr old---IGG 30 ++


Both were/are neuro
15 yr old Bartonella Hensalea and Quintana Positive
 
Posted by sometimesdilly (Member # 9982) on :
 
if i understand north, ali-

she's asking if both IGG and IGM are relevant. i think both definitely are, for lots of reasons.

but i am lost by the second part of what's there, north. i think ali is just trying to link a specific lab band - 30- with neuro-symptoms self- experienced.


---
for the poll, Ali"

tested 2- 3 times by igenex for co-infections- neg. .

positive- 30 IGG
neg IGM.

always primarily neurological symptoms (5 years).

dilly
 
Posted by AliG (Member # 9734) on :
 
quote:
Originally posted by Michelle M:
Seems unrelated, but might prove to be interesting since babesia in particular features neuro symptoms.

Michelle

Could we maybe go there after we determine if band 30 is significant to neuro symptoms? Hey! Maybe whatever in the borrelia triggers band 30 might be related to it's interaction with Babesia!??

Or maybe North, you could run another thread on that subject while this is in progress? That might get too complicated, trying to match stuff up?

It seems like it would really complicate the thread, especially if we ARE dealing with others who are predominately neuro-afflicted.
 
Posted by davidx (Member # 8326) on :
 
Hi-

When I was first tested through Igenex I had IGM band 30: ++

I have neuropathy symptoms and the doctors feel that it is also in my CNS.

I also tested positive for bart and babs.

Just for reference, here are my IGM IGENEX results from Oct/Nov 2005 so maybe someone can draw some conclusions from these results!

IGM
18 ++
22 -
23-25 ++
28 +
30 ++
31 +++
34 ++
37 -
39 +
41 ++
45 +
58 +
66 ++
73 -
83 -
93 +
 
Posted by sometimesdilly (Member # 9982) on :
 
Ali-

maybe rewording the post? so that those who do NOT have pos 30 post too, as negatives, and whether or not they are neuro?

dilly
 
Posted by AliG (Member # 9734) on :
 
I'm not sure that would work because those who SHOULD have band 30 positive, may still TEST negative. We couldn't definitively exclude a negative band 30 to mean it's really negative. I think that info might just serve to confuse me more. [dizzy]

I think I'm trying to identify the neuro nature of the disease with regard to band 30, since someone had the positive band in disease contracted in OHIO and they feel it can't indicate a european strain.

I think perhaps this may have neurological severity comparable to the European strain B.Garinii. Maybe that caused the confusion over the band's identity?

[confused]


HEY! Look at ME! I'm like the CDC [Eek!] I'm excluding the symptomatic and obviously-infected because they tested negative. [Roll Eyes]

No offense intended. It's just that, to me, your negative test is meaningless. You may very well have something that needs antibodies at band 30, you're just not making them or have them too tangled to isolate.

Actually that makes me kind of the opposite of the CDC. [Big Grin] Please don't feel left out, after 15-20 more tests, you too may make it into the band 30 club. [Razz] (Sorry, not nice at all! [shake] ) Just know that I still love you whether your 30 is positive or not!


OK - I'm sorry, I'm positively moronic. I really don't know what's wrong with me today. Maybe it's the switch to Amoxicillin? I'll have at least another week and a half on just amoxi, so if I get worse please feel free to slap me! [bonk]
 
Posted by AliG (Member # 9734) on :
 
Hi David, I'm just curious, Did you not have IgG tested or did it come up negative?

[confused]
 
Posted by cbsoapfan (Member # 12055) on :
 
IgM 30 is ++
IgG 30 is +

I do have neurological symptoms
 
Posted by LocalMan (Member # 11648) on :
 
Heavy CNS/Neuro symptoms...at least as far as I'm concerned! Shaking, shooting & stabbing pains, numbness, cognitive/sensory overload, emotional probs...but I digress.

4 months after recent symptoms started (4 years after initially treated) but before current Abx:

WB for Borrelia burgdorferi (via Igx)
IgM
30+
IgG
30+

also Tested positive for Babesia FISH RNA
(via IgX)

LocalMan
 
Posted by TerryK (Member # 8552) on :
 
IgM 30+

Yes, neuro

Babs and Bart (rash showed up after treatment started for lyme but bart tested negative).

I think both babs and bart can cause neuro symptoms.
Terry
 
Posted by LocalMan (Member # 11648) on :
 
For my own curiousity,
How do you define "CNS" involvement...is there a diagnostic test for that, ie spinal tap, or is it inferred by symptoms? I have nerve pain over my body, but have not had a spinal tap. Brain MRI with dye showed negative for MS, but no spinal fluid taken (yet).
Also, does babesia trump lyme with 30+ band involved..or is it all the same !@#$ed up !@#$ ?
LocalMan
 
Posted by MamaWolf (Member # 10578) on :
 
IGeneX IgM band 30++

Definite heavy neuro/CNS symptoms...but not all neuro.

Also have Babs and Bart.
 
Posted by Geneal (Member # 10375) on :
 
My Mom had band 30++ for IgM, as well as other Lyme specific bands.

She says she is without symptoms. I notice some memory issues though.

I am neuro, but only had a Quest WB with IgM band 23 only show up.

Go Quest!

Hugs,

Geneal
 
Posted by sometimesdilly (Member # 9982) on :
 
ali sweetness--

i still think you need to collect any and all answers about 30 that could help establish whether or not testing positive for 30 is linked to primarily neuro symptoms.

there may be lots of folk who test negative for 30 but who are entirely neuro, for all we know.

i may very well be missing a big concept here, but it seems like the result is definitely skewed if only positive 30's are asked to show up.

dilly
 
Posted by AliG (Member # 9734) on :
 
quote:
Originally posted by LocalMan:
For my own curiousity,
How do you define "CNS" involvement...is there a diagnostic test for that, ie spinal tap, or is it inferred by symptoms? I have nerve pain over my body, but have not had a spinal tap. Brain MRI with dye showed negative for MS, but no spinal fluid taken (yet).
Also, does babesia trump lyme with 30+ band involved..or is it all the same !@#$ed up !@#$ ?
LocalMan

CNS can be tested through spinal tap, I believe you can get false negatives there too.

Nerve pain, attention deficit, memory problems, confusion, disorganized thinking, rages and depression are some CNS symptoms that come to mind.

Babesia definitely worsens severity of CNS symptoms, IMO. I'm not sure how it plays into the deal yet, that's why I've asked for co-infections too.
 
Posted by AliG (Member # 9734) on :
 
quote:
Originally posted by Geneal:

I am neuro, but only had a Quest WB with IgM band 23 only show up.


Maybe you need to do IGenex or Quest drawn on a Tuesday? [Roll Eyes] Or maybe with further Tx it will turn up. Mine did after about a year and only through IGeneX, not yet with Quest.

I started all this with just a Quest band 23 in the beginning.
[Roll Eyes]
 
Posted by Polaris (Member # 11391) on :
 
Igenex

IGM: +30 ,++31, +58, IND41.

IGG: IND39, IND41

(IGG from one year ago: IND31, IND39, +41, +58)

I have neuro, vascular, and musculoskeletal symptoms.

I was told by MD that I don't have lyme.
 
Posted by cantgiveupyet (Member # 8165) on :
 
IGG band 30 positive

Severe neuro symptoms initially(burning, numbness, bladder signal issues), with sudden onset of symptoms.

main symptoms now are IC (bladder) tight pelvic muscles, memory problems

I cant get a coinfection to show up except for mycoplasm pneumonia IGG(if that counts as a co)
 
Posted by AliG (Member # 9734) on :
 
Dearest Dilly-

I think I'm confused. Geneal is what I'm thinking of as an example here. She has band 23, we KNOW that's Bb. She has no other positive bands and we know she should have more. We don't know what else should show up. We don't know if her 30 should be +/-.

There are other diseases that could have negative Lyme bands, hopefully anyone neuro on here has ruled out the other diseases.

What exactly are we looking for? Should we start another thread to see if negatives are mostly arthralgic? Do we want to see if mostly neuro = mostly negative?

I'm afraid I think I just don't get it. Sorry [Frown]

[confused]
 
Posted by sixgoofykids (Member # 11141) on :
 
IgG 30 +

Clinically diagnosed with babs.

I have all kinds of symptoms -- joint pain, muscle aches, disorietation, trouble reading blocks of info, get lost driving, poor short term memory, air hunger, night sweats, heart palp, TMJ dysfunction, insomnia, hair loss, etc.
 
Posted by Michelle M (Member # 7200) on :
 
quote:
Originally posted by sometimesdilly:
i have never heard anyone relate 23 as having a thing to do with babesia. my llmd never made that connection.


I think she said it was definitely Bb, as in borrelia burgdorferi, not Babs.


[Wink]

Michelle
 
Posted by cordor (Member # 9449) on :
 
Igenex results:

IGG band 30 = IND
IGM band 30 = NEGATIVE

The bands that I have consitently tested positive for are 39 + 41.
Also tested postive PCR for Lyme (1st time)

I am one of the unfortunates who has also been diagnosed with ACA.
WAS in europe in the mid-70's, but do not remember any bite.
Cori
 
Posted by sometimesdilly (Member # 9982) on :
 
thanks michelle.

right. Bb, not babs. geez.

i think this brain day isn't my
best for figuring out how to a good study.

my first clue should have been when my son opened up the refrigator and said, mommy? why is this dirty big can of fishfood here?

it was empty, maybe i put it there instead of the trashcan? [Eek!]

its dusk- time to close up the pod for the night..

dilly
 
Posted by northstar (Member # 7911) on :
 
IgG 30 indeterminate (+/-)
IgM 30 negative


Neuro since day one, with strong joint involvement during first year of treatment (joint stuff was not pre-dx).

North.
 
Posted by AliG (Member # 9734) on :
 
Polaris,

THOSE "MD"s are more commonly referred to as "ducks" here. They quack. [Roll Eyes]

I sincerely hope you know better now and have found a good LLMD by posting in "Seeking a Doctor" and are on your way to getting well.

Sorry for the run-on sentence. [Roll Eyes]

[group hug]
 
Posted by chamade (Member # 11472) on :
 
30 negative on IGG and IGM...only neuro symptoms.
 
Posted by AliG (Member # 9734) on :
 
quote:
Originally posted by northstar:
IgG 30 indeterminate (+/-)
IgM 30 negative


Neuro since day one, with strong joint involvement during first year of treatment (joint stuff was not pre-dx).


Ahhhhh, very interesting North! So major joint involvement came & went during treatment but Neuro is still unresolved.

I only had bouts of joint involvement here & there, My neuro stuff has been and still is a much tougher nut to crack.

I had learned early-on that when I had a joint issue, it resolved if I moved it a lot to get the blood flowing in there & flush out the inflamation.

I wonder if I don't have many issues with it now because I respond very quickly at the slightest hint of joint pain? I have yet to figure out a way to fix my head. [dizzy] [bonk] [dizzy]
 
Posted by AliG (Member # 9734) on :
 
quote:
Originally posted by cordor:
Igenex results:

IGG band 30 = IND
IGM band 30 = NEGATIVE

The bands that I have consitently tested positive for are 39 + 41.
Also tested postive PCR for Lyme (1st time)

I am one of the unfortunates who has also been diagnosed with ACA.
WAS in europe in the mid-70's, but do not remember any bite.
Cori

Dear sweet Cori, my angel! [Smile]

I'm so sorry about the ACA [Frown] Have you found anything that helps yet? I had been meaning to try to research and get an understanding of the nature of it. I'm going to have to try to make that another project.

Did you have neuro symptoms too? Or was it predominately joint pain?

Did DR.E Suprax you too? (They were supposed to be having success with it in Europe) or have cephalosporins been a problem? It didn't help me at all. So I don't think you missed anything if he didn't. [Roll Eyes] I actually felt consistant worsening over 2 wks on it.

I have to PM you about the rash because I have had weird rashes periodically appear on my foot and hand. No ducks could explain them. I did all kinds of crazy things to try to get rid of it.

I'm not sure if something I did got rid of it or if it just coincidentally, spontaneously resolved. Each time it appeared, I tried a ton of things because I couldn't remember what I thought may have worked before.
[confused]

I was in Europe in 1978 and 1984, don't remember any bite either but was horrifically ill with super-high fevers & raw sore throat for the week in 1984. I assumed it was strep because of the throat stuff. It may have been. (I just realized the possibility of STD Lyme, so I thought I'd also mention that I haven't travelled any europeans [lol] )

Maybe I should research Afzelii & Garinii?
Afzelii is ACA, Garinii is supposed to be more neuro. I'm guessing that if you have Afzelii, your symptoms are not very neuro?

This is all so confusing. There's just too much to need to know. [shake]

[ 24. August 2007, 11:19 PM: Message edited by: AliG ]
 
Posted by AliG (Member # 9734) on :
 
Hi Chamade,

Have you had any bands come up positive yet? If so, which ones please? [Smile]
 
Posted by AliG (Member # 9734) on :
 
ANOTHER QUESTION......

Has anyone else here on this list been to Europe besides Cori & me?
 
Posted by cordor (Member # 9449) on :
 
Hey Ali- I will tell you that my main symptoms are most definately neuro. In fact, I was diagnosed with MS in 1991 based on neuro symptoms and brain lesions. It seems most likely that it has been Lyme all along.

Even with treatment (although not adequate in length-because of my reactions to abx)...my main complaints and symptoms are pretty much 80% neuro symptoms.
 
Posted by cordor (Member # 9449) on :
 
and can't take suprax (allergic to ceclor, bactrim, macrobid, etc.)
 
Posted by JRachel11 (Member # 12891) on :
 
Positive band 30 from Stonybrook, Igenex and Quest labs.

Positive for Babesiosis at MDL/Igenex/Stonybrook

Many Neurological Symptoms: Seizures, Demeylinating Polyneuropathy, Encephalitis, Severe headaches, Total Paralysis. ....All Neuro.

Interesting topic [Smile]
 
Posted by pineapple (Member # 11904) on :
 
Yes, I was positive on 30 and many, many others. What does that mean?

I have both - really neuro and some joint involvement

Are labs following our specific positive bands and correlating those to symptoms and specific strains of Borrelia? 'cuz I'd like to know which I'm dealing with, especially since I read that tick borne relapsing remitting borrelia strains can cross with Bb on the WB.
 
Posted by AliG (Member # 9734) on :
 
Thanks JRachel!


CORI!!!!! [Big Grin]

I THINK IT'S THE LAVENDER!!!!!!!!!!

I read a study the other day that said it increases the Cardiac Flow Velocity Reserve (or something like that, I'm not sure if the words are in the right order).

In the study they used 4 drops of Lavender essential oil in a liter of water and did a 30 minute steam every day. I forget what the percentage was and not sure if I'd know how that info applies.

It probably wasn't anything I did to the rash. The lavender I've been using must somehow force the blood out into the capillaries that feed the skin to keep it from atrophying!

I've been hooked on the stuff. I don't know if I've ever had a rash since I've been using it. I don't think I have. I buy a Lavender organic essential oil body spray at the health food store.

I spray it on my pillows, it helps me breath better & helps me sleep. I spray it in my car when I need to cover up smells. It is the one fragrance I can tolerate among my boxes of cleaning supplies, bushels of room sprays and shelf of perfume bottles that make me want to vomit & make me violently ill!

I have several small vials of the essential oils as well. Sometimes if I run out of the spray I mix some in water in a spray bottle. I also use it as an insect repellent. Works great against mosquitoes.

If my house smells stale I spray it around the rooms.

A few drops of the oil can also be mixed with almond oil and applied to the skin. It's to harsh to apply undiluted. If the skin is raw or irritated I wouldn't apply it, just breath it in.

This might be worth a try! [Big Grin]

There are a few kinds. The ones that say calming are usually a softer sweeter scent. The ones that say activating are usually "Spike Lavender" and are more antiseptic in smell. Neither one bothers me, but I prefer the spike mixed with another one rather than by itself.

[Big Grin]
 
Posted by Charolette (Member # 13008) on :
 
Hi all,

I hope I don't throw a wrench into this, as I don't have a positive band 30... but was most probably infected in 'Europe' (UK / Ireland / European spouse / lots of travel / lived there in the 1980s / etc) and have the following 9-bands and co-infections:

Igenex IgM :
18 ++
23-24 +
28 +++
34 ++
39 +
41 +
58 +
66 +
93 +

Co-infections (tested 12 and 18 months after having started Lyme treatment):

Bartonella henselae* IgG - Cat-scratch disease
Bartonella quintana* IgG - Trench fever (which is spread by sheep and cattle)
* tests done at the LLT-Melisa Lab in Germany

Babesiosis - clinically diagnosed almost 12-months after starting Lyme treatment; Igenex FISH test positive 18-months after starting Lyme treatment of abx and Chinese herbs.

My symptoms were predominantly cognitive function; muscle pain / co-ordination / weakness; night sweats; and severe weight loss (>10%)
 
Posted by trueblue (Member # 7348) on :
 
IgM band 30 IND (Igenex) in 2005. It had been negative since I began being tested in 1993.

In my 2005 testing I surprisingly seroconverted and had a whole slew of IND and a smattering of + IgM response.

I have only had one positive test in all these years. 1998 IgG Igenex:

18 +/-
*23-25 +
37 +
*41 +
58 +

(oops, I lied mt first postive tests were LUAT circa 1996)

My initial tests were all band 34 only and later moved to 35.


I am primarily neuro and have always wondered about an different strain than those living near me. My sx were more nuero and I responded differently to treatment.

I was in England in 1974-ish and again in 2006 (after the testing). I don't believe we did much playing outside on a high school trip in 11th grade. mostly bus tours.
 
Posted by zil (Member # 12048) on :
 
My Igenex IGM results-----------Positive
I met Igenex criteria for positive with the two starred bands 34 and 39. I don't know what the + or ++ means. Band intensity? I do have neuro symptoms along with many others.

18 kDa ++
22 kDa -
**23-25 kDa -
28 kDa ++
30 kDa ++
**31 kDa -
**34 kDa +
**39 kDa +
**41 kDa IND
45 kDa -
58 kDa +
66 kDa +
73 kDa -
**83-93kDa -


My IGG result: **31 kDa IND
**39 kDa IND
Everything else was - (negative)
 
Posted by AliG (Member # 9734) on :
 
Pineapple,

Not a lab, just very curious. Trying to see if we can determine anything significant by the band.

An explanation of the WB stated that Band 30 is common in European strains and one California strain.

Someone said they picked it up via known tick-bite in Ohio and had NEVER been to Europe, so we thought maybe not European indicator? Alas, perhaps they had the California strain?!

We were a little confused [dizzy] and are trying to make sense of it.


Charlotte,

No wrench thrown! [Big Grin] Bb does exist in Europe. It's just that B.afzelli & B.garinii are not supposed to be here. [Smile]

Thanks for the info.


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" [lol]

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! [group hug] [kiss]


Zil-

Yes, band intensity. IND is REALLY light and +++ is REALLY dark.

Thanks all for the input!
 
Posted by sometimesdilly (Member # 9982) on :
 
'morning Ali..

your box is full, by the way.

and yes, i went to europe many times for my job from the late 1990's through 2002.

i was in vienna and prague 2-3 weeks before i got extremely sick, found EM, and was diagnosed with LYme in 2002.

delicately signing off this time, dilly [Big Grin] [Big Grin]
 
Posted by AliG (Member # 9734) on :
 
Morning Delicate Dilly [Big Grin] ,

Nice of you to join me. [hi]

I just figured out tha band 25 seems popular with the California strain. I'm going to post the info in my Igenex results for "Sixgoofykids". I wonder if her tick was a stray.

[confused]

I'll go try to clean my box. [Roll Eyes] Thanks!
 
Posted by perplexed (Member # 1913) on :
 
30 positive on IGg band neuro and other symptoms....eyes, tachycardia, Gerd, Lyme arthritis, polymyalgias, skin rashes etc.

I have chronic lyme disease confirmed by LLMD.

Hugs, Perplexed [bonk]

....................
"Frogs have it easy: they can eat what bugs them." (Barbara Johnson)
 
Posted by map1131 (Member # 2022) on :
 
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
 
Posted by trueblue (Member # 7348) on :
 
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" [lol]

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! [group hug] [kiss]



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 [Eek!] ) 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]
 
Posted by Jamiet (Member # 11601) on :
 
30+ WB IGG at Igenex...
30- WB IGM

SERIOUS Neuro symptoms....SERIOUS..!
 
Posted by Allie (Member # 10778) on :
 
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
 
Posted by AliG (Member # 9734) on :
 
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! [lol] [Wink]

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?
 
Posted by mjo (Member # 7876) on :
 
Dad's first IGeneX IgM Band 30 +/- or IND
IgG " " +/- " "

6 mos later (after IgM " " +
abx challenge) IgG " " +

Lots of neuro problems--diagnosed with Alzheimer's.

Good post.

Davidx That's one heck of a positive blot!
 
Posted by mjo (Member # 7876) on :
 
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!
 
Posted by sometimesdilly (Member # 9982) on :
 
anyone else going to join the 30 club?
 
Posted by Marz (Member # 3446) on :
 
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?
 
Posted by Marz (Member # 3446) on :
 
Forgot to mention I got lyme in Germany and am negative for band 30, but IND for band 31 and do have neuro symptoms.
 
Posted by Marz (Member # 3446) on :
 
Forgot to mention I got lyme in Germany and am negative for band 30, but IND for band 31 and do have neuro symptoms.
 
Posted by pmerv (Member # 1504) on :
 
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)
 
Posted by Beverly (Member # 1271) on :
 
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.. [group hug]

[ 27. August 2007, 11:39 AM: Message edited by: Beverly ]
 
Posted by Marcie (Member # 10070) on :
 
First igenex tests
IGM IGG
30+ 30+
31IND 41+++
39+ 39 IND
39 IND 58 +

Second Igenex Test

IGM IGG
23-25 + 39IND
30++ 41++
39+
41IND
66+
83-93 IND

I have babesia and have mainly neuro symptoms. I suspect bart too, but don't know for sure.
 
Posted by improver (Member # 8380) on :
 
Fisrt igenex test had 30+ second test 30-

First test had 9 pos. bands igm second test had 41 ind and thats it.

Still sick, and do have some neuro sx
 
Posted by map1131 (Member # 2022) on :
 
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
 
Posted by tory2457 (Member # 10384) on :
 
IgG 30+

Mostly neuro stuff.

Diagnosed with MS for 20+ yrs.

In treatment 10.5 months, getting better, but started having joint pain, numby toes and ankles.

Doc says neuro related, but will go away.
 
Posted by AliG (Member # 9734) on :
 
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?
 
Posted by sfcharm (Member # 9392) on :
 
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
 
Posted by bettyg (Member # 6147) on :
 
IgG 30 indeterminate (+/-)
IgM 30 negative


Neuro since day one, with strong joint involvement

also CNS symptoms


in europe in 1984
 
Posted by TO LIFE (Member # 12371) on :
 
Bumping Up
 
Posted by pattilynn (Member # 8065) on :
 
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.
 
Posted by Boomerang (Member # 7979) on :
 
HUbby negative on band 30. Only neuro symptoms now.
 
Posted by KauaiGoddess (Member # 11782) on :
 
IGeneX Western Blot

(before treatment)

IgG band 30: -
IgM band 30: +

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
 
Posted by sometimesdilly (Member # 9982) on :
 
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
 
Posted by AliG (Member # 9734) on :
 
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. [dizzy]

Thanks for sharing!! [group hug] [kiss]

I had lost this thread & even forgot what I called it [dizzy] , so thanks for pulling it back up again!

[hi]

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. [Roll Eyes] [shake]
 
Posted by perplexed (Member # 1913) on :
 
IgG 30 Positive Quest Lab 2 tests

Highly neuro and muscular skeletal

Hugs Perplexed [hi]
 
Posted by tic chick (Member # 9156) on :
 
IgG 30 neg
IgM 30 pos

Neuro Bb

Europe in 2000 but, no "relations" / European. [Big Grin]

Tic
 
Posted by kelmo (Member # 8797) on :
 
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.

Kelly
 
Posted by Cobweb (Member # 10053) on :
 
IGG band 30 non reactive -
IGM band 30 non reactive -

Camped [Eek!] throughout Europe one summer many moons ago.

Overall test results in 2004
AB screen value 3.8 (positive 1.2 or greater)
IGG Positive
CDC Positive
IGM Positive


Do I have neuro lyme? Well, I have been diagnosed with encephalitis and neuroboriolisis-so probably yeah.
 
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