Thursday, September 18, 2008

All I got was a 41band!

The 41 band is non-specific. It is meaningless by itself. Haven't we all heard this?  The 41 band cross reacts with other spirochetes. Maybe not. Early studies, with Allen Steere as a co-author, showed that the 41 band was the band that was most prevalent and showed up earliest in the course of Lyme infection. The CDC considers it specific. It is one of only 3 IgM bands tested in their surveillance test. IgeneX considers it specific, it is marked with a double asterisk. Peer reviewed literature regarding the topic is scant. It is generally, and incorrectly assumed that the CDC standard can be relied upon for laboratory diagnosis of Lyme. There may be cross reactivity with syphilis we are told. Maybe.  How many syphilis patients have I seen in my suburban practice in the last 20 years? One. The patient tested  positive for syphilis and the Lyme 41 band was non-reactive. Syphilis is easy to rule out and  extremely unlikely to be confused with Lyme -- unless a patient has both.  And other spriochetal diseases? Literature suggests the 41 band may cross react with leptospirosis, rat bite fever and relapsing fever.  These diseases are very rare, may cause life threatening illness and look nothing like Lyme disease.  It is reported that the 41band cross may reacts with dental spirochetes. The primary dental spirochete is Treponema denticola. Oral spirochetes are part of our normal flora and typically are not antigenic (our immune systems recognize these spirochetes as non-pathogens and an antibody response does not occur).  The DNA structure of the dental spirochete is very different from that of Lyme. The 41 band corresponds to antibody reaction to a 41 kd Lyme flagellar protein. Equivalent flagellar proteins from T. denticola are of 38,53 and 72 kd weights. If the Lyme Western Blot is properly performed the proteins should not cross react. The non-supported claim that the 41 kd band is only spirochete specific, not Lyme specific is repeated over and over again without supporting source material.

Lyme Western Blots should be performed by a reference laboratory. The test is labor intensive and not automated.  There is ample opportunity for human error. The 41 band may appear more often because of laboratory error.

Please know that Lyme disease is not a laboratory diagnosis. The laboratory supports our diagnostic impression and is adjunctive.

There are numerous new and emerging species and strains of Lyme for which the Lyme Western Blot will reliably produce a false negative.

Genetic factors limit the ability of many sick patients to mount an antibody response to Lyme.

A 41 band cannot easily be dismissed.  Since the test was ordered I assume the diagnosis was clinically suspected to start with.

In Maryland and Virginia statutes require that doctors inform patients that Lyme tests are inaccurate when the test is ordered.

The CDC criteria is for surveillance, not diagnosis.

To date, lab tests for Lyme all have flaws.

In the right clinical setting, an isolated 41 band should not be ignored. Lyme patients may have no bands. Alternatively, a 41 band may indicate exposure  in a patient who is asymptomatic and therefore does not have Lyme disease.

Lyme disease may cause disability or worse, the epidemic is out of control and more cases are reported every year.

If a doctor says you don't have Lyme because you only have a 41 band don't believe it.  Late diagnosis can have disastrous consequences.  Consider another opinion.

Updated 7/6/18

16 comments:

dogdoc said...

All we got on the chronic neuroborreliosis patient intially was the 41 band- even though bands were found in CSF and he seroconverted with treatment to be a full CDC positive with lots of bands.

pjeanneus said...

Presented by Dr. Gregory Bach, at the International
Scientific Conference on Lyme Disease, April, 2001.


OBJECTIVE:
Lyme disease, being a spirochete with pathology similar to syphilis, is often found difficult to treat due to the spirochete invading sanctuary sites and displaying pleomorphic characteristics such as a cyst (L-form). Because a significant portion of sexually active couples present to my office with Lyme disease, with only one partner having a history of tick exposure, the question of possible secondary (sexual)vector of transmission for the spirochete warrants inquiry.
Additionally, sexually active couples seem to have a marked propensity for antibiotic failure raising the question of sexually active couples re-infecting themselves through intimate contact.

METHODS:
Lyme spirochetes/DNA have been recovered from stored animal semen. Recovery of spirochete DNA from nursing mother's breast milk and umbilical cord blood by PCR (confirmed by culture/microscopy), have been found in samples provided to my office.

RESULTS:
Surprisingly, initial laboratory testing of semen samples provided by male Lyme patients (positive by western blot/PCR in blood) and the male sexual partner of a Lyme infected female patient were positive approximately 40% of the time. PCR recovery of Lyme DNA nucleotide sequences with microscopic confirmation of semen samples yielded positive results in 14/32 Lyme patients (13 male semen samples and 1 vaginal pap).

ALL positive semen/vaginal samples in patients with known sexual partners resulted in positive Lyme titers/PCR in their sexual partners. 3/4 positive semen patients had no or unknown sexual partners to be tested. These preliminary findings warrant father study. Current a statistical design study to evaluate the possibility of sexual transition of the spirochete is being undertaken.

Our laboratory studies confirm the existence of Lyme spirochetes in semen/vaginal secretions. Whether or not further clinical studies with a larger statistical group will support the hypothesis of sexual transmission remains to be seen. A retrospective clinical study is also underway.

We are reviewing the medical records, collecting semen samples of patients who were previously diagnosed with current and previously treated Lyme disease are being asked to provide semen,pap and blood samples for extensive laboratory testing.

CONCLUSION:
With the initially impressive data, we feel the subsequent statistical study on the sexual transmission of the Lyme spirochete will illuminate a much broader spectrum of public health concerns associated with the disease than the originally accepted tick borne vector.

Lyme report: Montgomery County, MD said...

I have read the study presented by Dr. Bach at a conference. I believe you are completely missing my point. If you had carefully read my blog you would understand my arguments regarding this presentation and its implications.
The conclusion that "our laboratory studies confirm the presence of Lyme spirochetes in semen and vaginal secretions" is not supported by the results. Franky it simply is not true. Please remember: PCR for Lyme is more likely to occur after patients have recieved antibiotics. Positive PCR tests show the presence of DNA only. This frequently means that pieces of dead Lyme spirochetes have been identified. No spirochetes have been demonstrated in these fluids. No dead intact sprirochetes have been identified: certainly no live motile spirochetes capable of causing infection have been demonstrated. All the discussion about statistical analysis is nonsensical. It doesn't matter how many semen/vaginal secretion samples are PCR positive for Lyme or how you manipluate this sort of data through statistical methods. Even if one wanted to suggest that the study suggests the presence of L-forms of the bacteria, there is no evidence that L-forms have infectivity! Tick bite exposure is irrelevant. Sexual partners are in the same environment and are exposed to the same risks. If both partners are being treated how can one purport that this is the cause of antibiotic failure. Lyme is usually very hard to treat.These generalities and innuendos are entirely unsuppported. To make this study revelant one needs only find one single live spirochete in any of these seminal or vaginal fluids. Of course this still would not prove that the diease is sexually transmitted. Positive DNA PCR does not equate with living organisms. The conclusions of this presentation are not warranted based on the infromation provided. This sort of report would never be published in a peer reviewed journal. Drawing spurious conclusions based on faulty logic, and passing along such things through the grape vine, is very detrimental to the cause of docs and patients who are fighting hard to expose the well established realities of chronic Lyme disease.
seriously.

pjeanneus said...

You state that a PCR positive test does not indicate that the actual spirochete is present, just DNA. You also state that PCR is more likely to be positive following treatment with an antibiotic. I would agree with you IF you were saying that antigen is found in urine more often following an antibiotic challenge. However, my background of testing for mycoplasmas would indicate that antibiotics will kill off bacteria which then tend to hide in deep tissue rather than in blood and urine, and the antibiotics will kill bacteria in blood and semen so that a PCR will be negative. Indeed, it is generally considered a waste of time to do a PCR on spinal fluid for borrelia for this very reason.
But, to make the point regarding PCR positive results from semen let me just post this article regarding PCR positive results for syphillis in semen.
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=108231
PCR can detect the DNA of dead organisms, but the latter are eliminated by the host relatively quickly (15 to 30 days) as compared to elimination of live treponemes (>120 days). PCR results correlated well with RIT results. These data suggest that PCR-positive specimens obtained from an untreated patient(s) or collected weeks after treatment indicate persistent infection. They also show that the process of elimination of T. pallidum from primary sites of infection is prolonged and incomplete.

I hasten to add that, like you, I wish the evidence did not exist that b. Burgdorferi is sexually transmitted. Unfortunately this is not logical nor supported by what little current research exists.

Thanks for all you are doing here to support patients who desperately need help with chronic Lyme disease however they got infected.

Lyme report: Montgomery County, MD said...

If you are correct, we are not talking about T. pallidum. We know that it is sexually transmitted. Bb needs to be injected into the blood stream. There is no mechanism of sexual transmission that fits the science as we currently understand it.

Most of Lyme patients have regular sexual partners who do not appear to be infected.

Hepatitis C, A blood borne pathogen is not sexually transmitted.

Lyme can live in the bladder. It cannot be known what the DNA of Bb found in these fluids represents. Viable forms of Bb need to be seen in these fluids to confirm the hypothesis. This should not be difficult to do.

pjeanneus said...

I think you want to make the point that borrelia is not sexually transmitted based on documented experience. You write that we know
T. pallidum is sexually transmitted. Of course, this was my point. They are both spirochetes.

You compare this to HCV which you claim is not sexually transmitted. That is an error even by US government standards.
http://www.guideline.gov/summary/summary.aspx?doc_id=9685&nbr=5194&ss=6&xl=999
Surveillance data also indicate that 15%-20% of persons reported with acute HCV infection have a history of sexual exposure in the absence of other risk factors.

But if we both want to say that borrelia MAY be transmitted sexually I think we could agree for now.

The problem with saying that most Lyme patients' regular sexual partners do not appear to be infected is not getting us anywhere for a couple of reasons.
1. Probably borrelia is not EASILY sexually transmitted.
2. Most people living in the same area or home are exposed to the same insects.
3. Symptoms of Lyme disease vary widely and might not be recognized for years in ones sexual partner.
4. Chronic fatigue syndrome which is probably at least partly due to borrelia infection in a huge percent of those diagnosed is found in increased numbers in non-genetically related family members at a higher number than in the general population. (CDC studies in Wichita, KS

As to what DNA antigen really is when found in urine samples I suspect a reverse western blot on any positive urine samples would help diagnose this more accurately and can be done at IgeneX where the urine antigen tests are done.

When patients diagnosed with Lyme ask me about safe sex, I tell them, "You have been having sex with your partner for awhile now. It is too late to worry about it." If they are dating someone then maybe get treated and use protection for a year or so.

End of story.

Lyme report: Montgomery County, MD said...

Quick comment

Lyme report: Montgomery County, MD said...

Quick comment: Lyme PCR is negative in spinal fluid and blood before patients have been given antibiotic therpay and after they have been given antibiotics. It lives in tissues and avoids body fluids. After an antibiotic challenge there are no studies which demonstrate antigenemia. PCRs of spinal fluid are still negative. It appears that killed Bb is excreted through the urinary route. Perhaps these are organisms which previous inhabited the bladder/prostatic tissues. Higher Bb antigen capture in urine after antibiotics occurs. Perhaps organisms die in the normal course of events, show up in urine and contaminate genital secretions. Reverse WB tests show antigen. Other hypotheses could be suggested. My point is that one needs to demonstrate viable, motile spirochetes microscopically or culture spirochetes from these fluids before this theory can have any traction. YOU MAY BE ENTIRELY RIGHT. IT IS SEXUALLY TRANSMITTED. My main point is that we do not know: When LLMDS tell patients that it (may be) sexually transmitted it reduces their credibility and the credibility of other efforts to get information about this horrific epidemic into the public arena. There is much we know about this disease based on hard scientific evidence and clinical studies, that is systmatically denied by mainstream medical sources. Let us try to educate others regarding that which is known. Theoretical issues like sexual transmission should be kept on the back burner and not openly discussed. Even if patients are told: "there is a theory that Lyme is transmitted sexually," what they may take from this is that this (as it becomes reformulated in their minds) is that sexual transmission is a known major route of Bb transmission. This information will be spread far and wide. Ultimately it will come home to roost. The source of this "information" leaves himself open to being discredited by folks who wish to discredit the entire "Lyme movement."
As I said at the start. Let's be careful about what we say. Why give the others "ammo" which can be used against us.

I used the HCV as a poor example. We know it is rarely transmitted sexually. This is not the case for HBV, for which sexual transmission is the rule. One cannot draw conclusions based on the biological behavior of similar organisms.

We agree more than we disagree.
I would like physicians to be as precise as possible; because we are dealing with a controversial topic. More research may in the future, shed light in this area. For now I tell my patients that it is not known to be sexually transmitted. This might be enjoined with a general disclaimer: There is much which we currently do not know about Lyme disease.
What is discussed amongst the informed is one thing. That which is said to patients and others need to be filtered differently.

BamaLori said...

I finally got my IgeneX test back and it has been impossible for any of the doctors in Alabama to consider that Lyme exists here, as they keep telling me.

My Western Blot shows IND for Bands 31 and 41 on the IgM, and band 41 on the IgG.

My doctor who finally ordered the test for me cannot read the results, except that according to the CDC guidelines, it is a negative report. I asked him after seeing the result sheet, what does this "clinically significant finding mean?"

He replied, they just want you to do more useless tests so they can make more money off of you, forget about it. I asked him to call IgeneX, for an interpretation, several times a week for three weeks, his reply was always the same, they will not call me back.

I did my own research regarding band 41, based on the CDC research; it seems to me that this is the primary indicator for Lyme.

I contacted a support group advocate and she gave me some tips on my diet such as eating 3 pedals of raw garlic a day, oregano and coconut oil, and avoid ALL sugar.

I am easily finding foods to avoid these days, as limiting the foods I eat makes it easy to find the ones that make me feel sick the next day, or cause severe headaches. Granola is one of those foods I must avoid now. Dont know why...also I have found that even Tylenol causes me severe edema. I awake in the pre-dawn hours having to pry my wedding bands off with even that now.

This new selective diet has been very helpful and has got my feet back on this planet. I no longer feel "trippy" and my IBS has improved, as well as my appetite.

I am up to at least 2 meals a day now. Before, it was hard to even keep 1/4 of one meal down. I have found that I do very well with steamed soy beans (edame), salads, plain yogurt, sushi, and occasionally mexican food. Processed foods are very bad on me.

I thought I felt like eating some Hardee's french fries one day...what a mistake that was. I was sick for 2 days after one small order.

I can eat potatoes if I cook them baked, especially sweet potatoes, sauteed in coconut oil or brocolli, steamed with butter, lemon, and fresh raw garlic.

I am still suffering from pounding outside ear pain, that awakes me, insomnia, headaches, that require me to pull my hair from it's roots to relieve severe pain, hot flashes, body pain and fatigue, muscle tension, numbness and pins and needles sensations in my arms, legs, hands, and feet; but my brain fog and ability to walk, talk, have a near normal BM, and drive are improving.

Just to feel in my right mind is such a relief. Is it possible that the Lyme is in remission, and I just had a bad bout of it? Will it return again severely? Is my diet helping the symptoms or is it just the phases of the illness?

I have an appointment with an LLMD this week coming up but I have read a lot of scary things about long term antibiotic use, on Medline and other medical journals; especially Rocepherin.

Is it possible that I can manage this disease, if in fact it is Lyme with a strict diet?

I have seen others get well with dramitic improvement of nuero symptoms like I have with the antibiotic treatment. Is is a hit or miss situation?

I am highly allergic to nearly all medications these days, especially antibiotics, such as Bactrim, Leviaquin, Omnicef, Tetracycline and others.

They all make me rash and itch profusely, bruising myself from scratching and causing doubling over, cold sweating, IBS..that is liquid... even with taking benedryl every few hours.

For a week on Bactrim for a staph infection (which I have never had before) I took 2 benedryl every 2-3 hours! Still no help.

I will have to drive 7 hours to see an LLMD.

There is so much controversy surrounding chronic Lyme treatment, as I read both sides of the issue. I am inclined to believe that mainstream medicine is all out for the almighty buck and love to profit from our decades of suffrage. Prescribing expensive antidepressants, unneccessary surgeries and causing more suffering and mental anguish without offering up a single diagnosis.

I have been told, so many times, it is all in my head. I believed them for a long time...not anymore.

I have had it for 10 years now, and it is affecting my brain. I was diagnosed with Lyme in 1998. I was told I was cured in 2 weeks with Tetracycline.

I forgot about it and did not attribute my multiple symptoms over the years to it. There was no "Google" in 1998, so I used to trust my doctors.

Mistakenly, I went to the Birmingham VA 2 weeks ago, thinking surely with this DNA test they would treat me right away, but no....I was told you don't present like Lyme, and even if it were, it is too late to do anything about it. They then said I am Bipolar, accept it -and the only choice I have for treatment is to medicate with mind altering drugs. I am convinced that these medications caused me to suffer with Tardive Dyskensia, as I lost the ability to talk or sit still.

It took three months to detox my body from this crap and regain my brain function. I sought out acupuncture, massage, and ayurvedic diet advice. This helped tremendously. I still cannot tolerate taking any form of supplements or pill based detoxifying agents, so I am doing it with food, water, and teas.

These anti-psychotics, such as Geodone, Lamictal, Lithium, Cymbalta, Lyrica, and more... cause me to become psychotic and they do not ever believe me.

They say I am having a manic phase...that only starts with the introduction of anti psychotics? Come on...give me a break!

Finally I took my husband with me, and he verified my horror stories, now they think we are both crazy. Great.

I refused to accept the new medication Abilify, angrily. Now my 3 scheduled VA appointments have all been canceled by the doctors this week...hmmmm. They state they only treat with medications, I said fine, give me some Rocephrin then! They said no, we don't treat with that, you need psychiatric medicine.

These "all in your head" medications have nearly killed me several times and I wish I were dead for months following severe adverse reactions to all of them.

Any advisement on band 41 and 31?
Should I continue with my Nazi diet and forget the long term antibiotics? I want my life back!

I will update at the end of next week, please feel free to email me.

Sincerely,
Lori from Alabama

Lyme report: Montgomery County, MD said...

With regard to the oregano, garlic diet I have this to say: I believe
it was the famous physician William Osler who once said: "When new treatments are developed, use them quickly before they stop working." The placebo effect works about 40% of the time but its effects are short lived.
Chronic Lyme remains the most controversial disease, perhaps in the history of medicine. Mainstream doctors and LLMDs inhabit parralel universes which rarely intersect. You need to read
"Cure Unknown" and see "Under Our Skin." You also need toread the ILADS guidelines and the IDSA guidelines and then decide what makes sense to you.
The 31 band is associated with a particular protein on the surface of the Lyme bacteria. It is quite specific. An IND band from IgeneX is likely to be a low level positive. Other labs only report if bands are present. They do not quantify the reactions. If you do a lot more research you will discover that you are dealing with a complex and nuanced subject. The clinical assessment is what matters, not lab results. It is best that you doctor will not interpret the results. If he did, he would in my humble opinion, give you treatment which would be of little benefit.

Lyme report: Montgomery County, MD said...

Dr. Kilani said that everyone has a positive 41 band. It's due to a dental spirochete. Is it?

Melissa B said...

Dr. J,

Thank you for your insightful blog posts.

I would greatly appreciate links to research showing that band 41 is only cross reactive for "spirochetes" not other flagellated bacteria or viral infections. Likewise, I would love to see your research showing that the periodontal disease spirochete is not actually cross reactive for Band 41.

The issue is frequently arising in children who have already been diagnosed with PANDAS/PANS (thus, they also have a clinical presentation for Lyme Disease). PANDAS/PANS doctors are routinely dismissing a positive 41 band as negative for Lyme.

Considering that the treatment options for PANDAS/PANS is different from Lyme Disease, it is important to discern whether or not there is a Lyme Disease infection, particularly considering steroids are routinely used with IVIG.

Jasmine Colon said...

My name is Jasmine.This is what I'm going through now. All tiders were normal but 41. I was treated in 2 years ago for Lyme because of tider 41 being present now I feel it's back but I keep getting negative results so Dr. Says I have an auto immune disease from a positive ANA but I know its Lymes. No one believes me. They think I'm crazy. I need help. I don't know what to do.

Lyme report: Montgomery County, MD said...

I am looking here because this 10 year old post is still very popular. The bigger problem is that many with Lyme will never test positive because they are infected with a different Lyme species, of which there are many. The test is based only on the typical Lyme bacteria, B. burgdorferi and only one strain, B31.

Lyme tests are very helpful when positive but may be unhelpful or worse (if not interpreted properly) when negative.

A doctor should know what a test means before ordering it. Not happening much.

My door is open.

Unknown said...

Thank you for all of the Lyme insight. I am a somewhat frustrated Lyme patient, that after 12 years of daily unexplained intense head and neck pain along with a host of other symptoms, I have been diagnosed with Lyme. However all of the diagnostic testing is not supporting the clinical diagnoses very well. Reactive on the western blot for band 41/93 but on the igenex band 41 and ind on band 31. I do have several other bacterial infections and HHV-6 as well as cocksackie. More tests have come back and I get those results tomorrow. It seems a lot of sick folks that are suspected of having Lyme have a band 41 reactive. I have a family member diagnosed with Lyme and being treated by a very experienced doc that says if you have clinical symptoms and 1 band reactive you have Lyme. My family member is feeling much better after a couple months of treatments 2 times a week at this clinic. Thanks again for the information I am using this for a discussion with my Lyme doc.

Amanda Bordeau said...

Looking for more information two of my three children are testing positive for IGG 41