I see A Infectious doctor next week to confirm Lyme.
what are the odds on only having one band ? Can I have Lyme with one?
can you tell me what you have had come back in you test results?
Posts: 47 | From maryland | Registered: Jan 2009
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
oh no, here we go again with the awful, awful band 41.
Here's the thing: it may or it may not mean lyme. Some people say NO it does NOT mean lyme. Some people say, YES it does, as long as you don't have syphilis or gingivitis..... and then there's people who believe that just about anything makes someone have band 41 in their blood like a menstrual cycle or eating certain foods, etc., which I find a little um... extreme and probably NOT the way it works...
In my opinion, I think band 41 means a lot more than most people give it credit for. But that's just my opinion and I'm no doctor... BUT you'll get lots of replies about this meaning either/or. I suggest you do a search titled "41" or "band 41", make sure you use title only in the search and under medical. You'll get MANY past discussions about it.
Where in Maryland are you? I was going to suggest if you're close enough, there's a lyme support group meeting in DC on Sunday.
-------------------- 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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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
In the beginning band 41 was as said by those who studied it Borrelia .Read newbie links
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Band 41 is the Ab's that attach to ("attack") the flagella.
Syphillis is the most closely related bacteria to Bb. It has the same morphology when it comes to the flagella.
There's only a few bacteria that have that same kind of flagellum that syphillis and Bb have. So many people think its VERY determinative of Lyme...cuz you'd think you would know if you could've been exposed to something like syphillis or you'd know you would have it already maybe. Although it takes years before syphilli sbecomes symptomatic as well sometimes many years.
It's possible that your body is making another kind of Ab that just so happens to closely match the Ab's that are normally made against the flagellum of Bb and Syphillis.
Chances are tho, it wont be a perfect match, so it wont bind tightly like a REAL Bb or syphillis Ab.
So next question should be: Is your POSITIVE result for band 41 a: (+), (++), or (+++) ?
If its IND, or even a single +...then there's a stronger possiblity that the band is just cross-reactivity.
If it's a STRONG POSITIVE signal, then it will appear as" ++, or +++
With a strong signal, thats a sign that your body is only able to make that 1 type of Ab against Bb presently if its IgM or over your lifetime (Give or take.) if its IgG. Due to it's highly immunological evasiveness (Bb's.), 1 type of Ab being found is common.
Bb has lots of mechanisms that hide it from being identified by our immune cells and humoral fatcors.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
James, Thank you for educating me about band 41. My LLMD told me that Band 41 really doesn't matter. My 41 was +++ so I guess it can be significant!
posted
well my story is I KNOW I have Lyme. I have had bells palsy 2x and have had lots of other problems.
I went to a neruo the other day who I have to say was the best I have seen yet!
He said he would put his money on lyme. that my case and symptoms match. but he said see the ID doc and he will decide.
he said they will have to do a spinal tap (MAYBE)
But My ent doc put me on leviquin(sp?) for 10days and now that i am off of that my head pain finally left that's a blessing... but my hips are killing me had them checked and yes just arthritis. keep in mind I am 34 and have it in every joint......
But when will it return ..I have heard that the urine test is more accurate then the wb and i know the CA lab is good i was hoping i didn't have to spend out of pocket yet.
this test seem like such a mystery... I have been fighting for 6 months know and i will win..
This ID doc better say I have it or I will go postal!!!!!! Posts: 47 | From maryland | Registered: Jan 2009
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Pooh, If you haven't had the Igenex WB yet, I would do that immediately! The other labs are not as good. Get the WB and find a good LLMD, I know how miserable the symptoms are.
Also spinal taps often miss Lyme, and they can be harmful to your body (leave you with pain).
posted
and I noticed your time line I like to hear your story. why was it so long for you to get diagnosed?
Posts: 47 | From maryland | Registered: Jan 2009
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posted
Approximately 50% of healthy volunteers have tested positive for band 41. This band alone certainly does not exclude lyme but it also is not diagnostic of lyme.
Regarding the reference to Dr. C's take on band 41, we need to keep in mind that this LLMD really only sees people that likely have lyme to begin with. The majority of LLMDs would not agree that band 41 is diagnostic of lyme.
I have done an exhaustive amount of research on this as both of my kids tested positive for band 41 (they are healthy...knock on wood).
HOWEVER, it isn't to say that these LLMDs wouldn't make a clinical diagnosis of lyme but it wouldn't be based at all on band 41 but instead symptoms, exposure, etc.
Again, I'm not suggesting anyone rule out lyme based on such test results as the tests are horrid. However, nobody should assume they have lyme based solely on band 41 being positive.
Posts: 561 | From mass | Registered: Jul 2007
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adamm
Unregistered
posted
If you have 41 without any symptoms, then yes, perhaps you should abstain from treating. But if you're experiencing any illness at all and syphilis and leptospirosis (very rare) have both been ruled out, then you need to find an LLMD.
Unfortunately, corrupt public health authorities have been lying about the disease since it emerged in the 70's and terrorizing physicians who give patients the straight scoop on it, so there are perhaps only 50 physicians nationwide who can be counted on to help the millions of Lyme victims out there. It's truly an atrocity of the greatest magnitude. You should read up on what you're quite possibly up against and post in Seeking A Doctor to get on the right track.
Good luck, Adam
lymecryme.com lyme-info.net underourskin.com
Spinal taps are next to useless in the detection of Lyme, BTW.
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Regarding the reference to Dr. C's take on band 41, we need to keep in mind that this LLMD really only sees people that likely have lyme to begin with.
Maybe you should go read the thread. I was NOT referring to what Dr C said about Band 41.
This is what I was referring to:
VITAL INFORMATION ON BAND 41!!!!
From a seasoned poster:
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."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Yes...spinal can miss. Everything can miss....10 times negative. Positive after 2 months on ABX.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
From KS: "Approximately 50% of healthy volunteers have tested positive for band 41. This band alone certainly does not exclude lyme but it also is not diagnostic of lyme."
I've said this before and I'll say it again, how do we conclude that these people are truly healthy? How do we not know that these people just look and seem healthy at the time but are harvesting/carrying lyme and just don't know it yet? We all know that the tests aren't conclusive, so even if these people test negative, that doesn't mean anything.
I know I carried lyme for over 10 years and looked and seemed healthy to everyone who knew me, and I also felt healthy a good bit of the time. And even NOW after I am very ill, I still test negative with only band 41++ present. My immune system is completely trashed and won't make antibodies to anything except to this band.
Also, everyone that I've known that had 41 present did have lyme, even if it wasn't 'obvious' and they seemed healthy at the time.
There are many LLMDs who believe 80%, if not more, of the population have lyme disease and co-infections, but don't know it because it's not giving them problems or very noticeable problems at the time.
-------------------- 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
Yes spinal tap is GARBAGE! Just gotta do it to rule out.
Very low % show Borreliosis in spinal fluid.
Also, I think that urine test may be questionable too.
I havent heard of ANY decent test except the WB...and the WB has to be interpreted by an EXPERT! Says so at the botom of the Test results:
"Diagnosis should not be based on test results alone. Results should be interpreted in conjunction with clinical symptoms and patient history."
And an expert is NOT an MD...or even an infectious disease specialist. Not even Dr's that are/have treated patients w/ Lyme before.
It takes a Dr. that has treated MANY patients with Lyme dz SUCCESSFULLY if u ask me.
Cuz my PCP here in Vegas says he currently has 14 patients w/ Lyme. He's fairly clueless. He actually listens to me tho...thats priceless!
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
Pooh bear, have you had nerve conductance test done then from ur neuro?
You should have general neuropathy then? Upper and lower torso? If its advanced you will. I dont know how long youve been sick.
That is usually a qualification (Perpheral Neuropathy.) for usage of IV abx by insurance co's.
It can be used as a symptom to help get ur Dx., but u need an LLMD.
Ur Infectious disease Dr is prob. gonna tell you you dont have Lyme. I can almost guarantee it. There IS NO definitive way for you right now. You'll have to get a little help from God, luck etc... Sometimes these tests liek urine and blood PCR based ones will come out positive...but very rarely.
Be prepared for a (-) dx. Just so ur not too let down.
Next step is LLMD for you. Travel to get to one if necessary.
If you treat Lyme for a while with abx, your WB profile may change. Especially your IgM may change first. Then they'll have to give you your dx.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
I have been experiencing this nerve pain in my head from the last bells on aug 08
the neruro said it was trigeminal sensory neuropathy. funny thing is the ent gave this antibiotic for 10days and now the pain has decreased to a level 2 ..
was it because of the meds? oh and i had sinus surgery on Dec 3 to help the pain and was on antibiotic then to. is it related????
no nerve test yet.
I have aching joints ,headaches, trouble swallowing, tired, ringing in ears, bells 2x, facial twitching, that's just a few....
why is the id do so different then the llmd? please help me understand....
how long do you need to stay on meds and how long before you notice the effect of the antibiotic making you feel better?
oh and i don't think i will be doing the spinal it doesn't sound like the way to go...
Posts: 47 | From maryland | Registered: Jan 2009
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
poohbear, lyme takes a lot time to treat. Not always, but usually more than two years. Some people have been on treatment for 10 years... it's a very long road unfortunately. But you can get better!
ID doctors weren't educated very well on lyme... that, or they are not treating people and therefore telling everyone they are negative because they don't want to have their license's put on the line. Long story - do research.
LLMD's are LYME experts and know how to treat this stuff and for how long and what to look for, etc. You can find an LLMD buy going to the 'search for a doctor' section of this page and posting that you need to find an LLMD in your area.
If you go to an ID doctor, you can, and they may start you on a very low dose of Doxy (but will say that a 2 week course of Doxy will cure you), but that is all they will do for you, IF they do that. Some will outright turn you away. So just be prepared for either way it goes.
-------------------- 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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