AliG
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posted
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.
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 )
[ 24. August 2007, 11:11 PM: Message edited by: AliG ]
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AliG
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I'll start!
me IGG 30 pos =
I have Babs too.
In Europe 1978 & 1984
[ 24. August 2007, 11:16 PM: Message edited by: AliG ]
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northstar
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Would you want to specify both IgG and IgM results?
And what about clinical vs. lab dx vs. therapy response for co-infections?
N/
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AliG
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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. Is it in relation to this thread?
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Michelle M
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IgeneX IgM band 30: IND IgeneX IgG band 30: IND Babesia WA-1 positive by Sonoma County
All neuro person,
Michelle
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Michelle M
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quote:Originally posted by AliG: Is that an entirely different topic than the band 30
Seems unrelated, but might prove to be interesting since babesia in particular features neuro symptoms.
Michelle
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AliG
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Thanks Michelle!
My theme song for the day.... "I'm just a ball of confusion" It looks like one of those days for me.
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Michelle M
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posted
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
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Both were/are neuro 15 yr old Bartonella Hensalea and Quintana Positive
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sometimesdilly
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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
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AliG
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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.
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sometimesdilly
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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
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AliG
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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.
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?
HEY! Look at ME! I'm like the CDC I'm excluding the symptomatic and obviously-infected because they tested negative.
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. Please don't feel left out, after 15-20 more tests, you too may make it into the band 30 club. (Sorry, not nice at all! ) 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!
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AliG
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Hi David, I'm just curious, Did you not have IgG tested or did it come up negative?
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posted
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
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TerryK
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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
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posted
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
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Definite heavy neuro/CNS symptoms...but not all neuro.
Also have Babs and Bart.
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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Geneal
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posted
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
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sometimesdilly
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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
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AliG
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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.
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AliG
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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? 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.
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I have neuro, vascular, and musculoskeletal symptoms.
I was told by MD that I don't have lyme.
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cantgiveupyet
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posted
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)
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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AliG
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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
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sixgoofykids
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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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Michelle M
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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.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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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
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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sometimesdilly
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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?
its dusk- time to close up the pod for the night..
dilly
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northstar
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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.
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AliG
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Polaris,
THOSE "MD"s are more commonly referred to as "ducks" here. They quack.
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.
-------------------- 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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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.
-------------------- 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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AliG
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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!
I'm so sorry about the ACA 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. 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.
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 )
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.
[ 24. August 2007, 11:19 PM: Message edited by: AliG ]
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AliG
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Hi Chamade,
Have you had any bands come up positive yet? If so, which ones please?
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AliG
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ANOTHER QUESTION......
Has anyone else here on this list been to Europe besides Cori & me?
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posted
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.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
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.
Posts: 339 | From nowhere | Registered: May 2007
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AliG
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posted
Thanks JRachel!
CORI!!!!!
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!
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.
-------------------- 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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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:
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%)
Posts: 7 | From Canada | Registered: Aug 2007
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trueblue
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posted
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.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
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.
My IGG result: **31 kDa IND **39 kDa IND Everything else was - (negative)
Posts: 383 | From Ar | Registered: May 2007
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AliG
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posted
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 and are trying to make sense of it.
Charlotte,
No wrench thrown! Bb does exist in Europe. It's just that B.afzelli & B.garinii are not supposed to be here.
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"
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!
Zil-
Yes, band intensity. IND is REALLY light and +++ is REALLY dark.
Thanks all for the input!
-------------------- 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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sometimesdilly
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posted
'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 Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
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posted
Morning Delicate Dilly ,
Nice of you to join me.
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.
I'll go try to clean my box. Thanks!
-------------------- 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
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
.................... "Frogs have it easy: they can eat what bugs them." (Barbara Johnson)
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UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[Roll Eyes]](rolleyes.gif)
![[kiss]](graemlins/kissing.gif)
![[dizzy]](graemlins/dizzy.gif)
![[hi]](graemlins/hi.gif)
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Is it in relation to this thread? ![[confused]](graemlins/confused.gif)
![[lol]](graemlins/lol.gif)
It looks like one of those days for me. ![[Eek!]](eek.gif)
I'm excluding the symptomatic and obviously-infected because they tested negative. ![[Razz]](tongue.gif)
(Sorry, not nice at all! ![[shake]](graemlins/shake.gif)
) Just know that I still love you whether your 30 is positive or not!![[bonk]](graemlins/bonk.gif)
![[Wink]](wink.gif)
![[group hug]](graemlins/grouphug.gif)
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