posted
Does a negative LP indicate the absence of neuro lyme? I tested positive on Western Blot, so now I'm confused.
My neurologist (non LLMD) was delighted today to announce I don't have Lyme in spite of a positive Western Blot, loss of vision for 4 weeks, memory loss, cognitive impairment, and migraines so bad and so long (10 weeks) he immediately treated with narcotics. Now, via email (he will not return phone calls and has declined an appointment for me to come in an understand what his treatment plan is) he informs me he plans to discontinue pain management and treat for "ordinary headache" relying solely upon the Lumbar Puncture. Why the sudden 180? Why deny access to antibiotics?
What can I say to my primary care physician tomorrow to help him take over short-term pain management and initiate IV antibiotic therapy? Are there any journal articles that might help him feel comfortable? I am not a pill chaser. I do not want a PICC line for fun. I want to get back to work and my life.
ANY help is appreciated.
Posts: 8 | From New York, NY | Registered: Oct 2009
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quote:Originally posted by NYC-Lyme: Does a negative LP indicate the absence of neuro lyme?
NO!!!!!
Spinal taps are about 20% accurate in finding Lyme. Trust the WB!!!!!
I'll be back later with more.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Your neurologist was wrong for doing that test for lyme if all he was looking for was lyme.
The Western Blot, together with history and symptoms suggest you need to ind an ILADS-member LLMD.
Most neurologists go by the IDSA and CDC criteria and guidelines which are horribly inaccurate and deny research of many good lyme literate MDs (LLMDs). ILADS is the professional group to which the best lyme doctors belong.
One of the leaders in ILADS for many years is the author of this piece below.
This explains why a LP is such a poor test. Plus, they can be very painful and you could have a tremendous migraine for weeks afterward needed someone to care for you, at least for many tasks.
And, they are expensive. Even if you do not pay out of pocket, someone is making money from a test that does not work to dx lyme.
AND - even if they found lyme the neuro will go by IDSA standards for treatment and you'd get 9 days' worth or 3-4 weeks max of one medicine alone.
Not enough.
=================
From:
ILADS Treatment Guidelines for the management of Lyme disease
Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells. The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%).
An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum. The proposed index of 1.3 would be expected to have even worse sensitivity.
. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
IMHO, he's full of it! My neuro doesn't know diddly about Lyme, won't treat for it, either, even though I am also positive. Luckily, I have an LLMD who is all over it!
It would be at least a start. ALso, check out the ILADS website: www.ilads.org, there may be more info there.
GOod luck, and hang in there!!!
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I know this is a lot of stuff to read. It can serve as a reference for you . . . I'm not sure what you've seen in the past and this is a good representation of the basics.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
-
-===========
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UOS wins top award at International Health Film Festival
UNDER OUR SKIN was just awarded ``Best Feature Film-Silver Award'' at the 1st International Health Film Festival in Kos, Greece. The tiny island in the eastern Aegean sea was the home to Hippocrates, father of medicine. Over 80 films competed and were juried by industry professionals as well as physicians.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests. . . .
- at link.
-
[ 10-13-2009, 07:33 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Lymetoo, and the other members that posted while I was typing, are right, just wanted to add my voice here.
I am fighting the flu right now so my resources are not to hand at the moment, but there are reputable research articles available that describe the limitations of PCR testing for Lyme in tissues, and the even greater limitations in Cerebrospinal Fluid (CSF from Lumbar Puncture).
It sounds like Lymetoo will be back with more for you, but you can also begin looking through google scholar and PubMed for relevant articles. Wish I could link you to some offhand but in bed at the moment, and all my research is on my other computer.
Please treasure your positive Western Blot result - it is a rarity. A recent Johns Hopkins study found that the current Lyme testing (ELISA and WB) missed 75% of true Lyme cases.
The current testing is terribly inaccurate (heavily weighted towards false negative), and the CDC recommends that Lyme is a *clinical diagnosis*.
PCR can prove the existence of the organism, but it's like dipping your cup in a lake and expecting to find a fat lake trout in it when you bring it back up. The numbers of Lyme spirochetes in CSF is generally very low. They do prefer the tissues.
Your Neurologist is sadly in the dark with regard to Lyme testing and diagnosis, and isn't even on the same page as the CDC. This is the norm, for now.
The testimony from the IDSA Lyme Guideline review panel, July 30, 2009 - Some ILADS doctors presented research in hopes of changing the IDSA guidelines.
Most of them feel that if THEY cant find it in THEIR test it CANT be real.
I diagnosed a nurse with MS in 1996 (I had zero lyme awareness at that time).
The local neurologist said it couldn't be so. He apparently was convinced a chiropractor cuold not get that right. The case was so obvious I have always said a 3 year old should have gotten it right.
And after going with patients to observe them being examined by neuros my respect for them went WAY WAY down.
Chuck him. Ignore him. And yes, certainly tell others in your area so they do not go to him, even with a referral from other docs.
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quote:Originally posted by NYC-Lyme: Why the sudden 180? Why deny access to antibiotics?
What can I say to my primary care physician tomorrow to help him take over short-term pain management and initiate IV antibiotic therapy? Are there any journal articles that might help him feel comfortable?
The sudden 180 is because he does NOT want to treat you for lyme. Keebler gave you some links to explain the controversy surrounding Lyme.
Your PCP probably will not help you...but I believe nenet gave you a link to info from Dr B .. his guidelines would help your PCP.
Go to Seeking a Doctor here and ask someone to help you find an LLMD.. a dr who knows all about Lyme disease and its coinfections.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Others have said this above, and you really need to act on this advice:
You have lyme. It causes the symptoms you list.
You need a lyme literate medical doctor for the proper treatment (antibiotics). That is a necessity.
Chuck the neurologist. He will not get you better, and is ignorant of the serious neurological nature of lyme/tick-borne diseases.
Best wishes to you, hope you can get the proper medical attention and treatment soon.
Posts: 2557 | From home | Registered: Aug 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
NYC-lyme, everyone contemplating going to a neuro should read your post. This is the game the neuros all play on people with lyme symptoms.
It was done to me also, and many others before us. (I had positive lyme test. Neuro ordered lumbar puncture and it was negative. Neuro told me I didn't have lyme in spite of a brain scan he ordered that stated "lyme cannot be ruled out" and 2 unidentified bright objects that showed up on the scan.)
Turns out I had not only lyme, but also babesiosis and bartonella. Tested positive for these with Igenex once I got to a good lyme doctor who followed the Burrascano lyme treatment guidelines.
The doc is the key to getting well from this disease from hell. The doc is the key.
You need somebody who has treated hundreds if not thousands of cases of lyme. You need somebody with a lot of expertise in treating this disease. Period. It is complex beyond belief.
It has been 4 1/2 years since I completed my lyme treatment and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
I still hang around here to help point new people to the way to get well from this disease.
I tell everyone to skip the infectious disease docs and the neuros. Neither of these want to diagnose anybody with lyme, and they will do whatever they can to just treat you like you are mentally ill and dismiss you.
They believe lyme is rare--very, very rare. And, they also believe it is easily treated with 30 days of antibiotics.
As long as these specialties believe these 2 untruths, they are useless to us. So, you have to "cross over" to the lyme literate docs names you get from lyme support groups and sites like this one.
Also, a Boston TV station did a great show on lyme disease a number of months ago. Here is the link to it: http://www.kettmann.com/Lyme
When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
What neuros wrong?? That never happens
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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This is the same story over and over with Neuros. They don't believe lyme can cause brain problems. And, when they hear someone talking about lyme, they dismiss them as having psych problems.
The bigger question is why are you wasting your time trying to convince these Drs that you have lyme and to treat it? GO TO A LLMD!
Do you want some novice who is unconvinced that you have lyme experimenting with your health?
You and your Dr should read Cure Unknown by Pam Weintraub and see "Under Our Skin" the documentary about lyme. Maybe buy it and let your PCP watch it at home.
No, forget that. GO TO A LLMD! (Did I mention that? )
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
I found the following in an article I came across when researching articles for my appeal.
Diagnosis of Lyme Borreliosis. 2005. Aguero-Rosenfeld, M., et al. Clinical Microbiology Reviews 18(3):484-509
Under the heading: "Detection of antibodies in cerebrospinal fluid."
includes the text:
"There are currently no FDA-approved tests to measure intrathecal production of antibodies in CSF.
Determination of intrathecal production of antibodies can be accomplished by measuring the CSF/serum index of B. burgdorferi sensu lato antibodies.
Intrathecal B. burgdorferi sensu lato antibody detection in patients with neuroborreliosis in the United States seems to be less frequent than that in such patients from Europe. A factor contributing to this discrepancy may be the difference in B.burgdorferi sensu lato species causing neuroborreliosis in Europe and the United States."
Essentially what that says is that (at least in 2005) there was no standard lumbar puncture test regulated by the FDA, but the Lyme Disease pathogen can be detected in spinal fluid.
The reason that it is less common to get positive results from spinal fluid in the US than Europe may be cause we have a slightly different strain here and they're not testing for the right one.
I don't know if that helps... but I can certainly commiserate on how horrible neurologists can be and how poor their bedside manner is.
But, you should try to find a doctor who is familiar with neuro-lyme problems. The diagnosis is difficult. Mine came with (a) a positive W-blot, (b) the classic cycle of symptoms flaring every 4 weeks or so that I had kept tract of for months while trying to get a diagnosis, and (c) the likelihood of exposure. Any LLMD worth his or her salt should be able to put the pieces together if they are there.
You might know by now, but neuro problems are hard to treat, even with a PICC. All the more reason to find a doctor who is willing to work with you and willing to work holistically on what the problems are.
There's a lot of great information on this forum, too, about how to find a doctor, what sort of medicines you can expect, and the worst of possible side effects (not that you will necessarily have any issue that bad).
And after all of that, you can always post more questions!
Good luck!
Posts: 36 | From Corvallis, OR | Registered: Jul 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would say he does not want you as a patient at
all. I would seek a LLMD posting in seeking LLMD in
xxxxx where they will help you find what you need.
There are many here to help you once you start
appropriate treatment. Prayers for a easy road.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
Abstract Excerpts:
Background
The long latent stage seen in syphilis, followed by chronic central nervous system infection and inflammation, can be explained by the persistence of atypical cystic and granular forms of Treponema pallidum. We investigated whether a similar situation may occur in Lyme neuroborreliosis.
. . .
Conclusion
The results indicate that atypical extra- and intracellular pleomorphic and cystic forms of Borrelia burgdorferi and local neuroinflammation occur in the brain in chronic Lyme neuroborreliosis.
The persistence of these more resistant spirochete forms, and their intracellular location in neurons and glial cells, may explain the long latent stage and persistence of Borrelia infection. The results also suggest that Borrelia burgdorferi may induce cellular dysfunction and apoptosis.
The detection and recognition of atypical, cystic and granular forms in infected tissues is essential for the diagnosis and the treatment as they can occur in the absence of the typical spiral Borrelia form.
==================
The first article has much attention on both lyme and Cpn (Chlamydia pneumonia, another chronic stealth infection):
Thank you so much for this great reply and the citations to back them up. This has helped me work with my primary care physician to get past the neurologist and on to a ID with a strong recommendation for IV ABX. I've got some hope for the first time in a while.
Posts: 8 | From New York, NY | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- That ID, I hope s/he will be open to full treatment. But, even if you get stared with a short course, it will give you time to find an ILADS LLMD. Most LLMDs are booked far ahead for appointments.
Be sure to read the guidelines posts in all the stuff above. Be sure to get your liver support and probiotics in place. (See Burrascano's Nutritional supplement list.)
Most IDs are of the IDSA camp and won't treat more than for one month. You might also find out about the boss for the ID. Can that ID think/work independently or is s/he tied to a clinic. Most IDs in a city (even if in their own private office) are sort of under the rules of a larger group of IDs and if one strays, they are reprimanded. At least that is the way it works in my state.
To see what most IDs offer, you can search "IDSA" Lyme "Treatment Guidelines"
An ID is not likely to consider other tick-borne infections.
Not to rain on your parade, but if you can from start, try to find a LLMD who is member of ILADS.
Not all go exactly by the ILADS (or Burrascano's) guidelines but they all KNOW about them - and the other ILADS research so that you can have the best individualize protocol possible.
Now, sometimes, an ID (who is almost always an IDSA member) will also be a member of ILADS or at least "ILADS-educated" - that would sure be helpful.
Best of luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ebbakarin,
Thanks for that article . . .
From that, this stands out:
" . . . The reason that it is less common to get positive results from spinal fluid in the US than Europe may be cause we have a slightly different strain here and they're not testing for the right one. . . . " -
Posts: 48021 | From Tree House | Registered: Jul 2007
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WildCondor
Unregistered
posted
Neurologists are usually clueless, and spinal taps miss most Lyme, that is why they are rarely done. I would run from that Neuro (who sounds dreadful) and go to a LLMD who will decide if you have Lyme or not.
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