Topic: Recent info from Dr. B on band 41...this is HUGE!
tickbattler
Unregistered
posted
I just attended a lecture today in PA where Dr. Burrescano spoke. It was WONDERFUL. There will be DVD's available in a few weeks at lymepa.org.
Probably the most important thing for me was that he said that Igenex now is able to do a monoclonal antibody test to determine if band 41 is specific to lyme. This can also be done for bands 31 and 34 (which I thought were specific to lyme).
So, from what I understand, if you a get band 41 but a negative lyme test, you can get your blood tested to determine if that positive band 41 is caused by lyme.
Has anyone else heard of this or done this testing?
My 2 year old had only band 41 show up as positive, and we are not sure if she has it, so I'm going next week to do further testing!
posted
Yep i was there too. Im so glad i went. There was so much good info. Dr. B is the man.
He never went into specific symptoms but derek was able to catch him afterwards and ask about the derealization.
So i guess the chronic derealization is related to Bartonella. Its good to have the best llmd in the country answer this question weve been wondering for so long.
djf2005
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Member # 11449
posted
yeah as joe said, he did not speak of it during his lecture but i got him afterwards.
anyway, i described the symptoms and he didnt even hesitate when he said bartonella.
i also asked him if he thought it possible to be co infected with just one organism such as bartonella and no lyme and he said "it would be nice, but we just dont see that"...
so there it is. dp and dr=bartonella
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
What do you mean by derealization. Is it the feeling like you are not really there. I am not sure if that makes any sense to anyone but that is how I can explain it. I get this often.
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posted
Wondering if monoclonal antibodies can detect all the various strains of Bb?
As you may recall, Yale had a patent on a lyme test that involved band 41, but they used just a part of the flagellin which is what 41 is detecting, the flagellin. Can see this and more info on the lyme cryme website:
disturbedme
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posted
Are you serious??!?!?! Band 41 has been the bain of my existence FOREVER. I MUST do this then. Both my husband and I have had band 41 only ever show up. Luckily, he isn't as sick as I am (knock on wood). But this is amazing news. I have to schedule to have blood taken from IGeneX soon then.
Now all I have to worry about is getting a test done and not having any bands show up this time. Knowing my luck, that WOULD happen.
They can't use blood from a year ago can they?! LOL. I know this is probably a dumb question, but I'm just curious how long they keep blood.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
This information was originally posted by Lymenetter Aligondo Bruce. I reposted it last year under Dr C's Western Blot Explanation.
Posting it here for present info and future searches.
+++++++++++++++++++
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 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.
----Aligondo Bruce
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TerryK
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posted
http://en.wikipedia.org/wiki/Derealization Derealization (DR) is an alteration in the perception or experience of the external world so that it seems strange or unreal. Other symptoms are feeling as though one's environment is lacking in spontaneity, emotional colouring and depth. [1]
It is a dissociative symptom of many conditions, such as psychiatric and neurological disorders, and not a standalone disorder. It is also a transient side effect of acute drug intoxication, sleep deprivation and stress.
Depersonalization is a subjective experience of unreality in one's sense of self, while derealization is unreality of the outside world.
Depersonalization and derealization are often used interchangeably, although evidence suggests they have distinct neurobiological mechanisms. Chronic derealization may be caused by occipital-temporal dysfunction.[2]
These symptoms are common in the population, with a lifetime prevalence of up to 74% and between 31-66% at the time of a traumatic event.[3]
I get a feeling of derealization when my rocephin shot starts to wear off. I do have bart.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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They can't use blood from a year ago can they?! LOL. I know this is probably a dumb question, but I'm just curious how long they keep blood.
No, you need to have the blood drawn on a Monday or Tuesday so it does not sit around in the post office over the weekend...so I think a yr would be too much to ask!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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disturbedme
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posted
Lymetoo - LOL! I thought as much.
Anyway, how would that work? I have my blood taken and *if* the band 41 came up, I'd then call and ask them to do the monoclonal testing for it? Or I'd have to have MORE blood taken for that?
Sorry. I'm clueless.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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seekhelp
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posted
My main question..does it matter about band 41. Most of you say symptoms only and treat regardless. I thought LLMDs believe this. Wouldn't this really change things? I assume IGenix wouldn't charge MORE money for this confirmation, right?
if it's a Lyme bloos test, wouldn't it be right for them to do their best to identify the meaning of a bad as part of it if they charge $200?
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Angelica
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posted
I would call the lab and see how long your blood will last there because I am sure they have it refrigerated unlike the post office. It may last for awhile.
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posted
Disturbed... You may not have to worry about it if you have 5 or 6 other bands show up!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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tickbattler
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posted
distrubed - I don't know exactly how it would work. Dr. B was talking so fast that he mentioned this quickly as a good advance in testing and that was it. I'm going to call Igenex on Monday to find out.
I was wondering the same thing about how long they keep your blood. It might keep if it's refrigerated. I'll ask about that too.
Band 41 is very significant for me since it's tough to determine if my 2 year old really has symptoms.
She is sometimes cranky after naps and itches her scalp and entire body a lot. She had a strange rash this summer that my ped says she sees a lot. However, it went away with abx treatment, so I'm suspicious. I unknowingly had lyme when I was pregnant with her, so I'm worried that I gave it to her.
Dr. B did talk about the importance of exercise (as much as you can tolerate) and also diet and supplements. He said that you need all of that in addition to abx. He didn't distinguish between aerobic exercise and weight lifting, as he does in his guidelines.
He hopes to publish updated guidelines this fall.
One question I have that perhaps you all who attended can help with....He clearly stated that you need to treat bartonella before babesia. It wasn't clear to me what the reason for this was.
He did mention that you couldn't take Levaquin along with the drugs that are used to treat babesia. I think he said that you couldn't take it with Mepron!
I remember seeing an earlier lecture he did about BLO's which said you couldn't take levaquin with zithromax or other drugs in that class because it makes the Levaquin less effective. I guess he has changed his mind on this one. This still doesn't explain why bartonella needs to be treated before babesia. DOES ANYONE KNOW THE ANSWER TO THIS? Thanks!
Another important point he mentioned was that the number one reason for treatment failure for babesia was that the dose of Mepron was not high enough. It is not very well absorbed and the pills are not as good as the liquid. Apparently you are now able to check your blood levels for Mepron to see how much is in your system. He recommends doing this if you are not improving. He also said the best treatment is a combo of mepron zith and artemesia.
disturbedme
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posted
Lymetoo - I doubt HUGELY that that would ever happen. LOL. I've had two Western Blots done and have only ever had 41 show up. IGeneX only showed 41++ and then a year later, LabCorp showed 41, both IgG.
If I ever had five or six bands show up.... yeah, I don't see it possible with me. LOL. My immune system is just.... bad.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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disturbedme
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quote:He also said the best treatment is a combo of mepron zith and artemesia.
What about people who cannot take zith???
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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tickbattler
Unregistered
posted
distrubed - he did mention alternatives for zith as clindamycin and gentamycin. He said doxy is not compatible with atoquavone (mepron).
gemo - I'm not sure why you would need to retest since he have had a positive lyme test. I think the band 41 info is more useful for those who are trying to determine whether they have lyme.
quote:Originally posted by gemofnj: I am confused.
My Igenex test was IGG negative and IGM negative (technically) but did have IND on 31, 39 and 41++. I was CDC positive in the beginning with #23 and #41, IGM.
So does this mean I should get retested??
Not unless you think you don't have Lyme.
Many would kill to have a CDC positive test!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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disturbedme
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posted
quote:Many would kill to have a CDC positive test!
AMEN to that! It would be so much nicer than having to constantly doubt your diagnosis because of a negative test.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Gem... Go read Dr C's explanation... once again!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
about Depersonalization and derealization:
be VERY careful not to toss these terms around for your regular doctors as they carry psychological labels.
Nothing is wrong with that if the term is being used accurately.
Some patients use the terms for brain fog and such severe fatigue and sleep deprivation that life is like a weird dream state.
Very few doctors outside of lyme specialists would know this connection to TBD (or bart) and it could harm your chances for fair treatment once this label is put in your chart at your GP's office. And, once in a medical chart, there is never a way to really correct or set the record straight.
It can be a bit (or a lot) of a more intense brain fog, however, if brain fog will work as a term, that's enough for the GP.
Lyme/TBD doctors are, of course, interested in the most precise description of what is going on.
posted
Do most of us with positive bands showing up on a Western blot show a positive 41 band? I did.
Posts: 13171 | From San Francisco | Registered: May 2006
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suki444
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posted
Tickbattler Can you clarify...is Dr B advocating we treat the Bartonella first with Levaquin?? Then do Babs treatment with the usual - Zith Mepron etc?
DOES anyone know why he thinks Bart has to be treated first?
posted
I have a feeling that IGeneX is getting a ton of calls on every possible thing, and it may be interfering with their work as they are a small lab. Check their website first and ask your own doctor these questions before calling.
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Rianna
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[QUOTE]Originally posted by suki444: [QB] Tickbattler DOES anyone know why he thinks Bart has to be treated first?
My LLMD always states that Bart/babs MUST be treated at the very beginning normally with a Lyme med although zith/mepron is not your only babs option. For me Malarone (4 pills/day) without a macrolide worked way better than mepron/zith.
I believe most LLMDS now insist bart and babs are treated at the very beginning with Lyme treatment alongside.
dmc
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posted
Yale says don't pay attention to band 41 because it means nothing. Yet they have patented a test for lyme that only uses band 41. They also claim the test is over 94% accurate. Patent link http://tinyurl.com/yslooc
In the this link, page 5 at the top right, one paragraph down, Dr Steere says that if you have band 41 this means that you either have gum disease, syphilis or lyme disease.
He also states that you can tell the difference between these illnesses by a clinical diagnoses.
posted
He said don't do levaquin with mepron? That's what I'm doing... did he say why? I think other people have been doing this combo too.
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Lymeorsomething
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posted
So does Dr. B think that both bands 31 and 34 can cross react? And to what? They've been prominent bands for me and I've never had the vaccine.....
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Angelica
Unregistered
posted
Treating bart from day one of treatment is difficult because it seems it is not always diagnosed from day one of treatment.
I know that was my case and I have yet to treat bart. I was diagnosed in 2006 and I guess they were not treating bart first in those days.
Looking back on it my bart should have been diagnosed right away with the history of my symptoms but my first LLMD was not big into diagnosing bart.
It all gets so very confusing. I wish the bart testing was better because I think the clinical diagnosis for it is still too often over looked. I feel that is what happened in my case. I had to really diagnose my bart myself.
I don't know if enough newly diagnosed lymies understand you don't need to have the classic burning feet and bart rashes to still have bart.
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quote:Originally posted by seekhelp: My main question..does it matter about band 41. Most of you say symptoms only and treat regardless. I thought LLMDs believe this. Wouldn't this really change things? I assume IGenix wouldn't charge MORE money for this confirmation, right?
if it's a Lyme bloos test, wouldn't it be right for them to do their best to identify the meaning of a bad as part of it if they charge $200?
I think they should charge more money. I would if I were them, especially if it's a fairly exclusive service.
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
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seekhelp
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posted
Sometimes I wonder as it seems nearly everyone on Lymenet hits a positive 41 kDa band. It just seems too prevelant to be that specific. I don't imagine gum disease causes muscle spasms and other neuro symptoms though!!
I have asked myself a million times how labs such as Quest, LabCorp, and other non-IGenix labs continue to receive reimbursement from companies and accreditation if they are so grossly inaccurate in their testing.
Standards never seem so disparate in other businesses. It's a hard concept to grasp. Now, if the positive results were backed up with PCR positives or antigen tests, which maybe they are, it is easier to comprehend.
I guess I'm not knowledgeable enough to really ever "get it."
quote:Originally posted by dmc: Yale says don't pay attention to band 41 because it means nothing. Yet they have patented a test for lyme that only uses band 41. They also claim the test is over 94% accurate. Patent link http://tinyurl.com/yslooc
In the this link, page 5 at the top right, one paragraph down, Dr Steere says that if you have band 41 this means that you either have gum disease, syphilis or lyme disease.
He also states that you can tell the difference between these illnesses by a clinical diagnoses.
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tickled1
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I never directly treated bart or babs, at least not that I'm aware of unless something I've been on covered it.
What I'm wondering now is, I'm getting a lot better and am left with just a few symptoms. Is not treating bart and babs going to come back to bite me in the butt later even if I'm steadily improving?
I tested negative for bart and babs although I know that doesn't mean anything. I did have air hunger and burning feet.
So far I've done:
6 wks. Doxy 8 wks. Ceftin 10 wks. Zith and now I'm on Biaxin and Plaquenil for about 3 mos.
I only had band 41 as well. I'm more concerned about my 2 year old b/c there's a chance she could be congenital. She also has band 41. She seems very healthy overall but there are a few things here and there that make me wonder.
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disturbedme
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laura - I definitely think you should cover bart and babs treatment. And no, what you have been on does not cover those two.
I think you should cover them especially since you have the burning feet and shortness of breath. I think if you do ignore them they will probably come back to bite you in the butt. And from what I've heard and from what many, many people here have said, it seems co-infections are usually worse than just the lyme by itself, so you want to be as thorough with this disease as possible.
Why hasn't your LLMD brought co-infection treatment up??? It seems s/he would have done that by now.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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tickled1
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posted
I guess since I've tested negative and I'm improving she hasn't gone there. She's a great dr. but not sure if she follows ILADS protocol exactly.
She takes insurance though which is huge. I CAN'T afford an LLMD that doesn't take insurance.
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tickbattler
Unregistered
posted
OK, I just spoke with Dr. Harris, the founder of Igenex about the new testing capabilities that Dr. B briefly mentioned in his talk.
Unfortunately, it turns out Dr. B didn't have the full correct info and the new testing does not relate to band 41, but instead bands 30 and 31. It does sound very useful, however. I will start a new post about this this describing it in detail.
richedie
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posted
Why is it so hard to prove that these A$$***** are so full of BS and hiding the truth? The woman who wrote Cure Unknown spoke at the conference this past week as well, has evidence of these people admitting chronic Lyme, so why can't this be used as evidence?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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