posted
My wife started to get really sick in March. Dizzy, reallly tied, achy all over, then her eyes started to move uncontrollaby, and her shoulder started to jerk. We were getting no where when someone suggested DR. C in New hampshire. He did Lyme tests and works with DR. Donta. Our normal doctor says he thinks everyone has Lyme. She has a negative test and then Dr. C did a Western Blot then sent to Stonybrook. It came back indeterminent, she only had 3 bands. He said that it meant she had more than a 90% chance of having Lyme. She started taking Plaquenil and Biaxin. How do we know if we are on the right track. It was only 3 bands. What do you all think??
Posts: 46 | From Middlesex, VT | Registered: Jun 2005
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posted
It depends what bands they were. Some bands are Lyme-specific; others cross-react with others.
My recommendation would be to have her tested by Igenex (www.igenex.com), generally regarded as the best Lyme lab in the country.
Call them, explain your wife's case, and they can recommend which tests should be run and send you a kit. You will then need your doctor to sign the lab orders.
In the meantime, I would think that you would want to continue treatment.
Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
You need to read DR C of Missouri's explanation of the Western Blot. He explains about the equivocal bands, or "indeterminate" as it's now called. They can be very important.
Bands 18 and 28 are outer surface proteins and band 41 is the most common borreliosis antibody.
janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
18 is lyme specific - I'm not so sure everyone has been exposed- My daughter tested negative-2 western blots 6 weeks apart-only a 41 band-41 is specific to spirochetes but not lyme-most people have spirochetes in their mouth
it appears you are on the right track- an experienced Lyme doc is very important-see support groups on the left for docs in your area
here's an explanation of the western blot-
Melissa Kaplan's Chronic Neuroimmune Diseases Information on CFS, FM, MCS, and more... Last updated November 4, 2003
Interpreting the IgG & IgM Western Blot For Lyme Disease
Melissa Kaplan
WORK IN PROGRESS!!!
The IgG and IgM Western Blot provides results in a way that lets us visualize the patient's antibodies. It is more sensitive and specific than the ELISA and EIA (that is, it is more likely to show positives where the ELISA/EIA showed negatives). The IgG and IgM WB should always be used when the Lyme IgG/IgM antibody serology has returned an equivocal or positive result.
If the patient is highly symptomatic of Lyme, there is actually no point in doing the ELISA or EIA serum tests, as they do not have the sensitivity or specificity of the Western Blot that is needed to have a prayer of detecting Borellia burgdorferi (Bb), the organism that causes Lyme disease.
In a sane world, wherein the CDC and AMA really did their jobs in protecting the public health and ensured the quick and proper diagnosis and treatment of patients infected with tick-borne infections, they would not bother with the ELISA and and similarly worthless tests and would, as you will read about below, pay attention to all the Bb specific WB bands when it came to Lyme testing. Alas, we live in this world, where, despite the publication of research from around the world, the CDC and AMA continue to ignore them, and recommend treatment protocols that result in undertreating active and latent or chronic infections, resulting in more people being sick and disabled by this disease.
Contrary to what many insurance companies believe, the IgG and IgM Western Blot for Lyme disease are not the same test. Some companies will deny one and pay the other, claiming they are the same test or duplicative of one another. IgG and IgM are two completely different antibodies.
IgM antibodies are the first antibodies to be produced in the body in response to an infection, and is produced in great quantity. IgM antibodies are large, up to six times larger than the IgG antibodies. IgM antibodies, when present in high numbers, represent a new active infection or an existing infection that has become reactivated. Over time, the number of IgM antibodies will decline as the active infection is resolved.
IgG antibodies are produced once an infection has been going on for a while, and may be present after the infection has been resolved. Generally speaking, the presence of IgG antibodies to an organism when accompanied by a negative IgM test for the same organism means that the person was exposed to that organism at one time and developed antibodies to it, but does not have a current active infection of that organism. When it comes to Borrelia burgdorferi (Bb), the organism responsible for Lyme disease, that is not necessarily the case.
To recap, depending on the numbers,
IgM is a sign of a current infection. IgG is a sign of a current infection, or of a past exposure to or of a past infection by the organism. Bb can hide in the brain and cerebral spinal fluid (CSF) andm by altering its surface proteins, can remain invisible to the immune system for a long period of time. Once the immune system figures out what it is and starts making antibodies to it, it shifts is surface proteins once again, fooling the body into thinking the infection is over.
Bb can also turn itself into undetectable cysts and various other forms (called L-forms) which also help it elude the immune system. If the immune system can't see it, the immune system can't make and, or only insufficient antibodies, which all contribute towards making the organism impossible to detect by any testing methodology, including WB. Thus, blood and urine tests for Bb can be negative, even if the patient is "challenged" by being given high dose injections of antibiotics to try to trigger a reaction from or partial die-off of Bb that will cause it to show up in the blood or urine.
When a false negative is returned on a blood sample, it is called seronegative. There are many reasons why a seronegative result may be obtained. A seronegative result does not mean the person does not have an active or latent Lyme infection. It just means that this particular test was negative. that is why all the symptoms presented by the patient must be taken into consideration when making a clinical diagnosis, and why other appropriate testing should be done to rule out other causes for the wide range of symptoms being presented by the patient.
As can be seen from the table below, The CDC's criteria for what constitutes a positive result is very conservative. As a result, it is believed by those who have been treating Lyme patients for years, and by those developing other, more sensitive tests, that the CDC criteria miss most cases of borreliosis and, as a result of that underreporting, grossly understate the incidence of Lyme in the United States.
IgG considered positive if at least IGenex: 2 @ bands present CDC: 5 # bands present IgM considered positive if at least IGenex: 2 @ bands present CDC 2 #bands present
Band IgG IgM
18 kDa .# p18 flagellin fragment 22 kDa Immunogenic integral membrane lipoproteins. Cross-reactive with other spirochetes/bacteria. Depending on source, may be specific for Bb or cross-reactive. [Coleman] 23-25 kDa @ # @ # OspC. 25 kDa is specific for Bb 28 kDa .# OspD, Oms28. Specific for Bb 30 kDa # OspA substrate binding protein 31 kDa @ @ OspA 34 kDa @ @ OspB. Specific for Bb 37 kDa . . p37, FlaA gene product. Specific for Bb 39 kDa @ # @ # BmpA. Specific for Bb 41 kDa @ # @ # FlaB 45 kDa .# [Flisiak]; appears for HGE [Ravyn] 58 kDa # 66 kDa # p66 Oms66 Hsp outer/integral membrane protein 73 kDa .. .. 83 kDa . . p83 high molecular mass protein. Specific for Bb 93 kDa @ # # an immunodominant protoplasmic cylinder antigen, associated with the flagellum. Specific for Bb
Abbreviations: Bb Borrelia burgdorferi Bmp Bacterial membrane protein Fla Flagellin HGE Human granulocytic ehrlichiosis kDa kilodalton = molecular weight Oms Outer membrane-spanning Osp Outer surface proteins p Protein
Limitations and Notes The bands in the above table apply primarily to the U.S. species/subspecies of B. burgdorferi. For band information on European and other species, please see Art Doherty's And The Bands Played On.
Positive (+ or +/-) IgGresults on Bands 31 or 34 kDa may occur after vaccination in otherwise uninfected people.
IGenex considers the IgM equivocal if only one of the @ bands are present.
Band Markings When reporting bands, the reporting laboratory marks each band with the following indicators of intensity:
- Not present + Low ++ Medium +++ High +/- Equivocal = indeterminate (there, but not as intense as Low)
Coleman JL, Benach JL. Characterization of antigenic determinants of Borrelia burgdorferi shared by other bacteria. J Infect Dis. 1992 Apr;165(4):658-66
Flisiak R, Wierzbicka I, Prokopowicz D. Western blot banding pattern in early Lyme borreliosis among patients from an endemic region of north-eastern Poland. Rocz Akad Med Bialymst. 1998;43:210-20.
Ravyn MD, Goodman JL, Kodner CB, Westad DK, Coleman LA, Engstrom SM, Nelson CM, Johnson RC. Immunodiagnosis of human granulocytic ehrlichiosis by using culture-derived human isolates. J Clin Microbiol. 1998 Jun;36(6):1480-8.
Tylewska-Wierzbanowska S, Chmielewski T. Limitation of serological testing for Lyme borreliosis: evaluation of ELISA and western blot in comparison with PCR and culture methods. Wien Klin Wochenschr. 2002 Jul 31;114(13-14):601-5
quote:Originally posted by hwilsonvt: What does that mean??
That's why I gave you the link!!!
Here's an excerpt
"In regards to the outer surface proteins, think of it like the skin of a human. On the outer surface of the Lyme bacteria are various proteins. As they have been discovered, they have been assigned letters, such as outer surface proteins A, B, and C."
posted
According to the articles you have to be off the antibiotics for 10-14 days before having a second test. We are 1 day away from one month and there has been no severe Herx reaction.
Posts: 46 | From Middlesex, VT | Registered: Jun 2005
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
You already have a positive test!
Why spend more money for more Lyme tests, save it, you'll need it for Lyme treatment and testing for co-infections.
Lyme often needs long treatment, I suggest you consider having your wife stay on antibiotics until seen by a Lyme expert.
quote:Originally posted by janet thomas: Lyme is a horrific disease, do not take it lightly. Give it an inch, it'll take 100 miles.
Your expert doctor cannot interpret a Western Blot! Did you read the explanation of the Western Blot test. Band 18 ALONE indicates Lyme.
The expert doctor said in his mind it is definate but the CDC does not say that and our normal PCP says LLD we are going to says everyone has Lyme. The company that did the test did not call is positive so we are worried it might be something else.
Posts: 46 | From Middlesex, VT | Registered: Jun 2005
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posted
I did not have a big herx until my 5th month of treatment. I am following Dr D.s proptocol and making a lot of progress.
Never mind the test. We know they are unreliable. I had 2 positive tests and the Drs. at a big hospital still tried to convince me I didn't have Lyme!
How many of they symptoms on the various checklists does your wife have? That is the best indicator of whether she has Lyme.
Dr. D. says there is much less herxing with P&B but wait till you start Tetracycline, fasten your seatbelt. At the end of my first month of tetra I herxed for 2 weeks. Then I started to get better and then just as I finished the 3rd month came dramatic improvement. Just because something doesn't seem to be working doeasn't mean it isn't. Dr. D. says you often don't know something is working until you complete 3 or 4 months of it.
Be patient and keep on reading and asking questions.
posted
I'm somewhat familiar with Dr. C. in NH, and I would assume he had the testing done at one of the proper labs, like Igenex or MDL. I also thought he relied on a clinical diagnosis as well as a blood test. I'm not discounting the importance of being tested, but the clinical diagnosis is just as important if not more important.
Are you familiar with the online support group in VT? There are several people that go to Dr. C. who post messages regularly. The link is: http://health.groups.yahoo.com/group/VTLyme/
quote:Originally posted by sweet pea: I'm somewhat familiar with Dr. C. in NH, and I would assume he had the testing done at one of the proper labs, like Igenex or MDL. I also thought he relied on a clinical diagnosis as well as a blood test.
Yes, he does use clinical. He even said if the tests came back negative he was still going to go forward with antibiotics due to her symptoms and all other options do not look like the cause. I have been trying to get into that group to discuss these items. Thank you for your help.
Posts: 46 | From Middlesex, VT | Registered: Jun 2005
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You are on the right track if you read literature put out by Socs who study tick-bourne diseases and work to treat patients to efficacy. www.ilads.org is a data base..an international medical society publishing work on TBD's. You'll also find allot of PubMed studies around the world on borelliosis.
As for PCP's and such making the generalizarion that Lyme specialists think everyone has Lyme.. two things come to mind..
one is..do they have a difinitive diagnosis for your wife's symptoms? can they definitively rule out an infectious cause? is their answer that she has vague and varied 'syndromes' for which nothing can be done but symptom relief?
in other words...how can a Doc readily and arbitrarily discount Lyme and other tick-borne infections without comprehensive analysis, data, and real answers as to why your wife is suffering?
Just food for thought when you hear that stuff. Many Docs are uneducated and a little intimidated by the ever mounting evidance that Lyme is way more prevalant than many have acknowledged, and some fear malpractice suits in the case of patients who were diagnosed with Fibro, CFS, MS, ALS..and in reality had an active infection that went untreated and got progressively worse.
Some Docs are very well intentioned, but simply lack expertise in the area. Either way their advise can be dangerous to patients who do have an active, progressive infection.
No - everyone does not have Lyme, but Lyme literate doctors can take clinical evidance, results of many types of tests, exposure, response to abx (which isn't always immediare, takes time).. ect, ect into account, and with all that, they are able to rule Lyme in or out with a much higher degree of efficacy than a five minute discussion in which it is flippantly dismissed.
The more you read, the more you'll see.
You will have more certainty as time goes on as to whether your wife is on the right track.
Doc D is one of the leading Doc's/researchers, and anyone working with him will have good a very good knowledge base from which to evaluate, treat, and monitor.
Meantime, it also requires patient awareness, because treatment is not simple.
The other thing I think of when PCP's discount Lyme so readily.. is..if you had a specialized illness of any sort, would you trust your care to a GP?
If you had hreart problems.. would a podiatrist have the qualifications to make judgements on your case?
Even the majority of infectious disease specialists do not have any experience treating Lyme to efficacy and say it does not persist. There are scores of peer reviewed pieces of medical literature that say it can.
You have to seek out experts in the area for answers, and they can also help you rule these infections out, should that be the case.
(btw, I had an EM rash, which is diagnostic of LD, and rapidly increasing neurological symptoms following a long flu..and confirmed Lyme via DNA in the blood..and yet I only had band 41 showing until I was further into treatment, then more bands appeared. The WB is testing for antibodies.. your body putting up a fight. Oftentimes, the folks who are most ill are not producing antibodies to the disease, which is why they are ill. The CDC croteria was origionally set up for reporting purposes, not diagnostic. Even they say diagnosis must be clinical, yet many Docs look to those guidelines as diagnostic. If you study literate analysis of the Wastern Blot in Lyme and other, it's clear that the CDC analysis of 'positive' and 'negative' makes no medical sense whatsoever.)
All the best to you and yours,
Mo
[This message has been edited by Mo (edited 14 June 2005).]
Posts: 8337 | From the other shore | Registered: Jul 2002
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cafe67
Unregistered
posted
I was really sick - same symptoms, very achy - especially my knees. My eyes were ok, Although I couldn't focus in the dark. shaky on the inside rapid heart beats. Felt like I had the flu for 9 months.
ER 2x - neuro, regular doc, endo - all said I was depressed/anxiety - 5 quarts of blood - all tests came back fine - that's when I started to suspect Lyme.
My test was IND by Igenex and my LLMD treated me and I can tell you I have made VAST improvements!
I can make it through the day without a nap or having to lie down everytime I did a load of laundry.
I took my kids swimming last night and actually played with them for an hour.
I'm hungry, the inside quaking stopped, my heart beats are more regular - my blood pressure is back to 117/75.
You can do all the tests you want and think it's something else. But when you start to get all test back (MS, AR, echo) fine then really take it seriously that it is lyme.
Some things that were wierd were high calcium, low potassium, very high epestein-Barr titer, slightly high Thyroid, then tested fine, adrenals were off, high cholesteral (I usually have very low cholesteral.
Hope this helps - I was wanting to deny it too because my test was Indeterminate. Can you be indeterminately pregnant?
1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
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