LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I did not test + on band 41 on either of my main stream elisa or western blot with my GP, but when I got tested from Llmd from Igenex I DID test + for 41.
2 of my kids tested + with 41 from their GP elisa (no other testing done yet)
My LLMD is telling me band 41 "almost everyone has" and is not lyme specific.
Is this true in your eyes? I can't fin info about what each band means and I am very curious Thanks in advance!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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posted
Band 41 represents the detection of the antibody for the flagella of the bacteria. The Flagella is a lash-like appendage that protrudes from the cell body of a variety of bacteria used for locomotion.
A number of common bacteria including the very common ulcer-causing Helicobacter pylori and those that cause Periodontal disease have flagella.
So the presence of some common bacteria can cause a positive on the Band 41. Band 41 is only meaningful when its present in combination with other Borrelia surface protein antibodies.
Many have questioned its usefulness in the Lyme Western Blot but it has remained since the original 1995 Dressler study that drove the IgG criteria.
So the detection of the flagella band 41 in the absence of other Borrelia specific surface antigen antibodies probably is due to another bacteria flagella.
Many people including myself have seen different results from different labs. Based on my own experience, Igenex seems to have a lower threshold of detection than labs like Labcorp.
Posts: 51 | From California | Registered: Aug 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- From your past posts, one of my replies:
You had the EM rash 14 yrs ago. Proof, all by itself.
You have classic symptoms of chronic lyme
Your previous test shows: 23 Bb IgG present. That is lyme specific.
Your recent test shows 23 present. Again, that is lyme specific.
Dr C s Western Blot explanation is discussed here - lots of detail about what it all means:
Reasons for False Negative (Seronegative) Test Results in Lyme Disease -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Based on many things you have posted, I'm quite sure the doctor you see is NOT really a LLMD. He is not ILADS-educated, that is very clear.
First, you are getting solo treatment. It should be combination.
Second, he seems to be insistent on talking you OUT OF "having lyme." There is no need to focus on that outdated detail about that band #41 when your past & fairly recent tests, history & symptoms are so clear. He's not well educated in this area.
He also seems to be caught up on the CDC criteria, which is so very wrong in so many ways.
Also, seems to be ignoring assessment for coinfections - and also failing to give you suggestions for support for liver / adrenals as most LLMD do.
Now the fact that you are getting some extended antibiotic (even if just one) implies that he may not be strict IDSA but he's far closer it seems than what would benefit someone with lyme.
Single Rx prescription of a single antibiotic without an antiprotozoal in the plan can cause chronic lyme (re: cystic form) and also set up resistance in other ways.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
[ 10-27-2013, 03:39 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I know that you've posted about budget roadblocks to finding an ILADS-educated LLMD. Some detail here may be of help:
Financial HELP and relevant information -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Lisa, anyone with band 23 has lyme. It only presents when a person has lyme. Some people with 23 and 41 also have FL1953.
You need a lyme literate doc (LLMD). One who follows ILADS protocols. They have WAY more knowledge on the subject of lyme and company than ANY type of doc out there, including top ID docs.
The reason for this is because anyone other than an ILADS doc is following a pitifully out dated guideline to identify lyme, so lyme is missed or dismissed as all in your head, a virus or they think you're a hypochondriac. They are stuck in an outdated program, have closed minds, and can't find their way out. Unfortunately most people know nothing about this. Following anyone's advice who is not an ILADS doc will leave a person stuck in downhill spiral.
You can go to www.lymediseaseassociation.org and they will email you some names. Also, you might want to pick up a copy of Cure Unknown, Weintraub. It explains it all.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Posted below Dr C's WB explanation are many valuable comments. Take time to read those. One of them is this gem:
-
VITAL INFORMATION ON BAND 41!!!!
From a seasoned poster: (NOT Lymetoo)
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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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Fabulous post Lymetoo!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
The 41 kPA band shows that the body made an "anti-body" that was the correct length to match up with the left-over "tail" of most ALL spirochetes (borrelia) that results when the 'kete' dies & breaks down. It binds to the lil' "propellor" & the body then discards the package.
A "+" result for the "41 band" on a standard Western blot assay (IgM OR IgG) means nothing. Even common borrelia on the flora of the mouth (they behave themselves & don't cause issues for the carrier, like "Lyme") will also trigger "41-kPa-length" antibodies.
There's supposedly a test to determine whether the positive 41 band was induced by borrelia Burdorferi (Lyme), but I'm not sure how accurate it is.
Some of the bands are "Lyme specific" & the seasoned LLMD will take a + result on ANY *Lyme-specific* band into serious consideration when diagnosing a patient who is suffering symptoms consistent with Lyme disease.
After all, the only way one's body would have any anti-body present that's Lyme-specific is to be exposed to borrelia Burgdorferi, receive blood from a host who was exposed, recieve it from the mother during pregnancy, or- arguably- be the recipient of a Lyme vaccine, which contains segments of the borrelia.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
[QUOTE]Originally posted by Keebler: [QB] - Based on many things you have posted, I'm quite sure the doctor you see is NOT really a LLMD. He is not ILADS-educated, that is very clear.
First, you are getting solo treatment. It should be combination.
Second, he seems to be insistent on talking you OUT OF "having lyme." There is no need to focus on that outdated detail about that band #41 when your past & fairly recent tests, history & symptoms are so clear. He's not well educated in this area.
He also seems to be caught up on the CDC criteria, which is so very wrong in so many ways."
Keebler- he did diagnose me with lyme. I was refering to band 41 more for knowledge. Since my 2 kids had that band I was wondering- that's all.
Now that fact if dr is true LLMD- I am very much questioning that for the other reason you mentioned, like my liver pain, thyroid distrubances, lung pain, etc.
but I am confused here a lot because when I asked this forum if lyme drs treat stuff like this I was told by all the responses that I'd have to go to a regular md for other things even if caused by lyme
I may be incorrect here with myself, but that is what I recall. This is all still so hard for me to "get it all" together since I am so affected in the brain
I hope this makes sense
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
miyamotoi , thank you for this info. this is interesting because my daughter who has band 41 only on limited WB has terrible terrible teeth.
And I have been diagnosed with "possible to develop" epylori. (waiting for clinic GI apt Nov. 11!!!)
So these may be showing up from those things?
I know I have lyme & co, but that 41 could show up from that or other things- interesting.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
catgirl, interesting about FL1953.
I don't think I heard of that one. Great, more to worry about.
I have contacted LDA a few times for referrals, but it is so limited with only giving 3 out within 30 days!!!! and if all those three are a bust (which some have been!) then I have to wait so long to even search again and then they might be of no use too.
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-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I just did LDA search again and only selected LLMD. They told me dr. G. B. - I have contacted him and found him to be very strange and full of himself and he was actually feeding me things I wanted to hear like how we are amazingly both Lithuanian and other things in common -
like he was TRYING so hard to get me to come to him. He said I needed to come that Friday because since the tick bite and EM were on my breast I have a high likelihood of developing breast cancer
and that I needed his help immediately or I will die. yes, he actually said that. So he was my best buddy for 20 minutes on the phone and then sent me to his office person and she COLDLY told me the price and
that no payments were accepted. This was when I first searched so I was traumatized by the cost. Plus, we had so much in common and I was his buddy, but he didn't care ENOUGH to let me come "be saved" since I couldn't afford it!!!!!!!!!!
this is inexcusable in my book.
another fault with that referral system is that while any dr can be an ILADS member- since my CURRENT lyme dr is! that doesn't meant they treat in ILADS way.
I have also seen this first hand in a local lyme support meeting- they had guest nuro speaker and he touted giving a talk *FOR* ILADS, but I found several flaws in his testimony of experience, and I am NEW at all this!!! Plus he gives steriods all the time!
AND all the drs I have ever contacted (about 20) all say they know of ILADS and Dr B and all the top dogs, but they will not tell you their actual protocol unless you go to see them
shame shame, it is easy to see why so many people think this whole lyme thing is a scam for drs to get rich!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Yeah, I'm with you, I would be concerned about the guy selling it. It's good you are wise to docs like the neuro speaker too. What a disappointment he had to be.
I had a hard time trying to find out which protocols the docs were using as well. They really don't know who is on the other end of the phone though. You could be anyone trying to take them down. They are simply protecting themselves.
I ultimately had to travel out of state to find someone decent, as the docs in my state don't believe lyme exists. They have their heads up their a******s.
Keep in mind that there are very few of these docs and tons of patients like us. I settled on one because he could see me quickly. He did help me too. I went through several before I found one that I like. Yet, each one helped me get to a certain level in my lyme treatment, so I am thankful for all of them. It's a journey, for sure.
Sorry to scare you about FL1953. Just wanted you to be aware. We all have something. Healing for me has been slow, as lyme and company are multi systemic diseases and difficult to differentiate at times as symptoms overlap.
Did you post for a doc here in Seeking? That might be a better avenue for you. You can also ask people to send you a private message about the doc or what they've heard.
We need to protect all lyme docs here, as they are putting themselves on the line because the idsa has ridiculously old guidelines, which the cdc and insurance companies follow. They don't like that the docs are not following their flawed model, so they try to shut the docs down. Lymetoo's post really did say it all.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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another fault with that referral system is that while any dr can be an ILADS member- since my CURRENT lyme dr is! that doesn't meant they treat in ILADS way.
- VERY true. Getting names HERE or from a SUPPORT group is much better.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Hi Catgirl, yes, I posted here several times about PA drs and specific Drs here and close by states. The best one(s) are not affordable to me. Makes me very sad.
From my search earlier to LDA I got the name of a woman I haven't heard of and turns out she is a lyme social worker/counselor that deals with children and advocating to schools AND PARENTS (if you can believe that one)
She was so great. I talked to her for an hour and she gave me a dr lead that her husband is being treated by that isn't that far- less than an hour.
anyway, this woman was unbelievably helpful and most enjoyable to speak to! yay!
He is not ILAD but I will call him and see what he's about.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Lymetoo, I did post about Drs here and the ones that sound hopeful I got such mixed reviews about from ppl here, and the one that I feel drawn to, dr. S in DC is so much money that I'd have to divorce my husband to go to her!
tsk tsk. I will not give up!
Now that I have rested my brain, I will read your lengthy post above!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
and there is a problem with docs "saying" they are ilads when they arent...
ilads is working on that
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i think we know who the lyme soc wker is and yes -she is great...my kids went to her 12 yrs ago
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
after reading all above I feel like I have been raped. I am feeling a little numb to all this- from these so called drs that hide and lie. and some days think why bother going on- just die already.....
Why did this happen to me? what am I supposed to do? I am a firm believer in "reason for everything" and I am determined to figure my reason out.
I just hope God gives me enough strength to do it!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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