My daughter recently had her first Western Blot and had only 1 positive band on 41. She has some symptoms and we started treatment, but I was wondering:
Is there anyone here who started with only one positive band, and later came up with more bands after a course of treatment?
Is there a chance that one band isn't a Lyme diagnosis?
Posted by timaca (Member # 6911) on :
Yes, there is a good chance that lyme is not the correct diagnosis.
Was your daughter also checked for things such as EBV, HHV-6, Cpn, enterovirus?
Best, Timaca
Posted by Nicole_Denise (Member # 20620) on :
Did your daughter have an IND bands?
Also- from what I've read, although band 41 isn't specific to Lyme, it is specific to spirochettes.
My doctor said that the other things that would show up there would be syphillis and gum disease.
I had just band 41 ++ and 39 IND, but my doctor still thinks I have Lyme (and agree).
So- it might not be Lyme disease- but don't rule it out. After all, Lyme disease is a clinical diagnosis. You can have a totally negative test and still have LD.
Are you seeing an LLMD?
Posted by thejoje (Member # 19976) on :
She had IND bands on the IgG--31 and 30. She is being tested for mono bec her main symptom is fatique. I will ask about HHV-6, Cpn and entero as well.
Posted by thejoje (Member # 19976) on :
Also, the 4 other members of our family have LD.
Posted by sutherngrl (Member # 16270) on :
I just had band 41 and my doctor believes it is Lyme Disease.
Posted by Leelee (Member # 19112) on :
I concur with Nicole_Denise. Plus, with the two IND bands and other family members infected with Lyme, I would suspect Lyme.
My Igenex WB had several + bands, but the Western Blot I had done a month before that at my PCP's office was negative, even for Band 41. She used LabCorp or Quest, I believe.
My niece had only Band 41 on her LabCorp WB, but when re-tested with Igenex a few weeks later had more bands too. Both of us definitely have Lyme and co-infections.
Hope that helps.
Posted by TerryK (Member # 8552) on :
quote:Originally posted by thejoje: [QB] She had IND bands on the IgG--31 and 30.
Those are very important! An "IND" is a weak positive.
Be sure to read Dr C's Western Blot explanation .. 6th topic in Medical.
Posted by Lymetoo (Member # 743) on :
VITAL INFORMATION ON BAND 41!!!!
The number of people exposed is in the millions. The reason you can't get treated is they have decided that only early disease merits diagnosis and treatment. The bacterium itself is the most bizarre human bacterial pathogen known, and is poorly understood.
They don't know how many people are carrying a permanent relapsing brain infection. you can't get diagnosis or treatment because they have to pretend it doesn't exist and use labels like 'post lyme' and 'CFS' etc. for those who manifest illness.
Look at what Steere did in his 1992 study which is the foundation for the CDC serodiagnostic standard. He and others often look back on this and refer to a 'normal' control, but in fact the control was taken from sick people...MS sufferers, CFS sufferers, in sum, conditions which could have been caused or complicated by late Bb infection. Moreover, he threw in 25 syphilitic patients which constituted 20% of the control. Hoever, syphilis itself has an annual US incidence of 3 per 100,000.
This statistical chicanery, which fudged the result at 41 kDa on Bb blot by many multiples, is significant, because syph serum will cross react at 41 kDa to Bb western blots. It allowed them to 'swift boat' the importance of the reaction to 41 kDa, which is the earliest and most consistent human ab response to Bb infection, being present in all stages as opposed to the rest of the proteins which are variably expressed according to stage, tissue type, even temperature.
Flagellin {41kDa} is necessary for Bb to survive under all conditions, and is constantly expressed, including in late CNS infection. Yet they chose to swift-boat this response.
Why? It's for political and economic reasons. telling the truth about diagnosis and treatment results in mass panic and probable economic collapse/political revolution. it's likely a bioweapon. North American disease is different from European disease...lack of CSF antibodies, for instance.
A much larger range of serum resistance to host species in wild{allows Bb to infect a much wider range of species, important in disease spread and maintenance in wild}. The CDC has found that Bb 31 goes intracellular in CNS cells.
Telling the truth threatens the careers and livelihoods of the very individuals who control this issue and who have actively lied and deceived and otherwise operated a scientific propaganda campaign for the past 15+ years, profitting from the campaign as they went.
Lyme disease, which in the US also perhaps includes other pathogens notably a bioweaponized bartonella, threatens the entire establishment. If late disease was rare, we'd be able to get treatment. Unfortunately, the EIS/CDC,DOD totally screwed this up and tried to make money off of the disease, making profitability their first priority as opposed to protecting the health of americans.
Think about this...Allen Steere wouldn't listen to Polly Murray in early 90's when she reported a big incidence of neuropsychiatric disease in lyme. She had to call Fallon. Now, Fallon has overwhelming evidence of a serious disabling relapsing brain condition which is not easily treated.
Global hypoperfusion on spect/pet ain't normal folks. Don't you think the CDC etc. should be breaking their balls trying to figure it out? Instead, we see nothing at all, only continued attempts to deny illness and obstruct treatment.
Obviously, they know what is going on, and have determined that the best course is to do nothing, to cover up, knowing that in doing so, they are condemning large numbers of people to perpetual diagnostic and treatment hell.
Think about it. It's a horrific scandal and I'm not sure how much longer these *******s can keep control of it.
---- posted by Lymenet member Aligondo Bruce
Posted by TerryK (Member # 8552) on :
Just want to mention that we've been told for years that band 41 cross reacts with spirochetes that cause dental infections.
From the first link I posted. "Current papers like to say that the 41band cross may reacts with dental spirochetes. Does the evidence support this? The answer is no."
No need to read the second link since tutu posted the text.
Terry
Posted by Pinelady (Member # 18524) on :
2 years ago I had one band unidentified in IgG
region for which my doctor said I did not have it.
I had him do the test. And I am guessing it was
the notorious 41...I wish I has pursued that
one band so I would not have been sick so long for
which treatment is going to have to be a lot
longer. Expect a years worth. So don't give up on
Lyme. It very well could be.
Posted by hope4sofia (Member # 20577) on :
I have found this thread very helpful.
I tested positive on band 41 and IND on bands 31 and 39. I was discouraged that my test wasn't more clear.
What causes and IND band. Is it like a low positve?
Posted by n.northernlights (Member # 17934) on :
In other labs, they only report bands that are stronger than the reference band, I think I remember reading. Igenex also reports the bands that are equal to the reference band, and calls it IND. anyone, am I right? (and what about the bands that cliearly are there, but weaker?
Posted by Nicole_Denise (Member # 20620) on :
Hmm. The way it was explained to me was that a negative meant there was NO band- ie nothing showed up.
A positive was a clearly identifiable band. And IND was in between.
I haven't heard anything about "reference" bands-after all, wouldn't nothing be the reference? You shouldn't develop the immune system response to Lyme disease if you don't have Lyme disease.
Posted by thejoje (Member # 19976) on :
Thank you all. Your replies have been incredibly valuable.
There is nothing quite like others' experience to help light the way.
Posted by kitty9309 (Member # 19945) on :
Positive and negative controls are always run as comparisons with each test.
Not only are they references, but they confirm that the test was set up and run properly.
Posted by Nicole_Denise (Member # 20620) on :