Question for Scott

Hi Scott,

I have been in contact with the expert Neurologist based here in Zurich University Hospital. I mentioned our website and also the fact that neurologists have answered a series of questions about MAV directly for the forums.

He would be happy to answer a series of questions we may submit to him, but firstly wanted to check it was ok with you and also whether we should use the same questions used in the sticky or gather a load of fresh questions from people on the forums,

Dr Straumann: http://www.neuroscience.ethz.ch/research/motor_systems/straumann/index

Cheers
Rich

Richy
Did you actually have a test in one of those machines on Dr Straumann’s website? I would have run a mile - make that 10!
Barb

Hi Richy,

Yeah, of course it’s OK! Good work! Always glad to have the input of another specialist on this forum. Tell him I said thank you and really appreciate his time.

Have to have a think about the questions.

What do others want to ask?

Actually here’s something that comes to mind: How does he handle other potential diseases that might be mimicking VM? How does he rule out some of these unusual things we’ve seen on the forum lately such as Lyme or CSF leaks or whatever? I assume as Jen posted yesterday he simply uses differential diagnosis to boil it down to what is most obvious for most people. In other words, if there’s a migraine history and it runs in the family it’s a no-brainer but I wonder what would make his alarm bells go off and start looking for other things. Would it require multiple failed medicines? I don’t know – it’s probably a silly question. The answer already seems obvious to me.

  1. Differential diagnosis
  2. If NOTHING makes any impact after a big effort with lifestyle and meds, start looking for rare conditions that sit way out on the fringe.

Given the above is probably pointless, another thing that comes to mind is chronic VM. I’d like to know his thoughts on it – does he think it’s simply part of the spectrum? Why is it still not clearly recognised? I’ve seen hundreds come through here over the last 8 years. My thinking here is as I posted yesterday: external trigger sources can be responsible as can physiological problems or viruses … and then some just have a really shitty case of VM. A bad hand of cards dealt. I wonder if he would agree?

Sorry … thinking out loud and rambling.

Scott 8)

Nice one Richy, really good work. I wonder if we could ask Dr. S if he’d agree to do the same…or has someone already asked? Agree with Scott that it’d be interesting to ask exactly how they confirm the migraine diagnosis and rule out other potential conditions, especially given the wide variety of symptoms forum members share…but also perhaps as you say Scott it is due to the commonality of migraine?? and faimly history. I’d be interested to ask which concurrent symptoms would a neurologist consider NOT to be migraine related, i.e. are even things like muscle twitches, sore eyes etc all part of the migraine host of symptoms…I’d be keen to know what/when a neurologist would look to other causes. Maybe we could include a question about the prevalence of long term chronic MAV type symptoms in comparison to classic forms of migraine too to clear up all the debate on that topic (and given the publication of recent paper on the topic). Thanks again rich. xx

ok great… What I shall do in that case is start a new thread gathering questions from everybody, i will most likely start it tonight when home.

I will include the questions you have both already asked and then once we have a full list of questions, maybe we can narrow it down to 10 or 20, don’t want to swamp the guy haha.

Till later, cheers all

Sounds good Richy.

Maybe make it the Top 10 or 12 questions for 2013! Let the thread run for about a week so that everyone sees it.

First and foremost–SCOTT–I don’t think your questions are silly at all!!! They are asked often, but we never get our answers, and are always hopeful that a new voice may offer a new perspective!!!

Second–can you PIN, STAR, BOLD or otherwise mark the thread to ensure its identification as IMPORTANT on the board?

Third–in case I don’t get to see the thread later I have a HUGE question–it may not make the list, but still:

Has there been any research that connects migraine activity or vestibular dysfunction with the autonomic nervous system or autonomic dysfunction? Does a history of autonomic sensitivity (fainting, low BP, BP irregularity, heart arrythmia etc) often coincide with migraine or vestibular dysfunction? Has there ever been a statistical analysis completed to investigate the overlap between patients presenting with dysautonomia and migraine/migraine variants?

Thanks

Scott - With all due respect, you are providing incorrect information here. Lyme is a worldwide epidemic. For you to state that it is “rare” or “unusual” is misinformation. It is an epidemic that is growing rapidly with every passing year. and, yes, worldwide, including the UK. My only goal is to help people, and I know that this forum is very research based, which is what drew me to this forum in the first place. So, I beg of you to do the proper research before providing such incorrect information, as I know your main goal is to help those suffering with vestibular symptoms. I’ve always been so thankful for all the research that you do to help us. that is no small feat, and I greatly appreciate it.

Rich - i am sorry to take up your thread with the above, but I did need to clarify. I am so thankful that you are trying to help us by contacting this doctor. Such good questions for him, but I just wanted to forewarn that he likely isn’t an expert in tick-born illnesses and might not have the correct information regarding ruling out such infections. I think about you frequently and know with your determination you will get well.

Lisa,

I’m going by what the Centres for Disease Control and Prevention (CDC) have reported.

Cases state by state to 2011:

http://www.cdc.gov/lyme/stats/chartstables/reportedcases_statelocality.html

This CDC map (2011):

Fast Facts
In 2011, 96% of Lyme disease cases were reported from 13 states. Lyme disease is the most commonly reported vector-borne illness in the United States. In 2011, it was the 6th most common Nationally Notifiable disease. However, this disease does not occur nationwide and is concentrated heavily in the northeast and upper Midwest.

Read this article from Science-based Medicine. These people weigh up all of the evidence out there on a whole range of topics and give a balanced view.

[size=130]Lyme disease—who is credible?[/size]

There is also an entity often referred to as “chronic Lyme disease“. This entity isn’t widely accepted in the medical community, but is strongly advocated for by a vociferous group of patients and doctors who believe that Lyme disease can cause all manner of very late-onset symptoms.

The controversy is a nice model for many similar controversies: the science doesn’t support the existence of the disease, but a dedicated group of activists, including some scientists and physicians, feel their extensive experiences more than make up for lack of data. What some of us have problems with is not only the lack of data, but also the willingness of people who believe in this to go about trying to prove it in unconventional ways, for example, relying on lab tests that are not validated. It certainly doesn’t help their cause that they attract a lot of kooks, but of course, it doesn’t really matter how many kooks the chronic Lyme folks have on their side; what matters is data, and if their data are the most convincing, their hypothesis wins.

And the chronic Lyme folks certainly believe that there are dark forces arrayed against them. You see, these folks think that Lyme disease causes all sorts of problems, and that there are many solutions, including long term antibiotic therapy. The data so far do not support this hypothesis. And this is where it gets interesting.

So the Infectious Disease Society of America (IDSA) has recommendations on the treatment of Lyme disease, which are shared by all the other relevant mainstream medical societies, and these guidelines specifically recommend against the long term use of antibiotics for supposed chronic Lyme disease … in the mainstream of science-based medicine, this is essentially a non-issue. No significant evidence has yet shown up to overturn our current approach to Lyme disease. This hasn’t stopped the chronic Lyme advocates.

So, in this debate about “chronic Lyme disease”, who is credible? Is it the experts in the field who have looked at the preponderance of data? Or is it a movie producer citing an ethics article which contains incorrect statements of fact and is written by a non-expert in the field who was banned from NIH funding for falsifying data?

http://www.sciencebasedmedicine.org/index.php/lyme-disease-who-is-credible/

Read the comments too – some from doctors by the looks of it.

I am not having a pop as I don’t know either way but what makes you say it is a worldwide epidemic and that it is not rare?

From the NHS in the UK:

Lyme disease is the most common tick-borne infectious disease in Europe and North America. People who spend time in woodland or heath areas are more at risk of developing Lyme disease because these areas are where tick-carrying animals, such as deer and mice, live.

The Health Protection Agency (HPA) estimates that there are 2,000 to 3,000 cases of Lyme disease in England and Wales each year, and that about 15%-20% of cases occur while people are abroad.

Population in England and Wales is about 56 mil. So if my maths are right the chances of getting it is:

0.00535 which is half a percent so it is extremely rare.

— Begin quote from "robertgreen99"

0.00535 which is half a percent so it is extremely rare.

— End quote

That’s actually 0.005% or another way to look at it is 5 chances in 100,000. But that’s not quite accurate because this value fluctuates depending on which area you’re in, especially the US. In Delaware for 2011, the worst case scenario, the incidence was about 85 per 100,000 which is about 3x less than the odds of having Meniere’s disease. In most other states apart from the northeast it’s negligible.

Hi Scott and Rob,

I get why you both say what you say but I feel that Lyme is massively mis-understood and (in the US particularly) a hugely political disease, I honestly don’t sit either side of the fence in terms of my opinion re: it’s commonality. I am sceptical about my own Lyme diagnosis despite the positive blood tests, but I don’t feel that epidemiology released by the CDC will give a true representation of its prevalence, but this is only my opinion…

A link to the UK Lyme Disease Association 2008 conference here allows access to powerpoint presentations on the topic given by Dr. David Owen and others regarding Lyme. Dr. Owen uses the CDC figures but couples this with saying, quote ‘the debate goes on re: under or over diagnosis, but a condition which causes non specific and variable symptoms and lacks a sensitive diagnostic test would be expected to be under-diagnosed’. There are some good presentations to review…

lymediseaseaction.org.uk/wha … es/2008-2/

I guess at the end of the day it doesn’t matter whether Lyme is rare or not, it matters whether people do or don’t have it and whether they need treatment. I think that can only be decided by a patient and their doctor and weighed up due to likeligood of exposure, symptoms, family history of migarine etc…

l xx

I don’t know much about Lyme or about its prevalence worldwide but I understand that part of the issue with it is that many people who have it are undiagnosed or misdiagnosed for long periods of time. A lot of this is down to inaccurate and insubstantial testing. Therefore it is thought that there are a lot more people with Lyme than official figures suggest. I think that is why some people believe there is actually an epidemic out there and many more people have Lyme infections than is known or realised at this point in time.

Hi Scott,
Thank you for posting that article. It is so ironic because I did go back to my doc who originally told me my testing for lyme was negative, and he basically said exactly what was in that paper. He would not have me do further testing for all the reasons explained. He also said although he was sorry that I am not much better and he could not help me, he cautioned me not to go to these expensive lyme docs as many of them prey on desperate folks (like me). I am not saying others on the forum don’t have lyme but I am saying that we are a vulnerable group desperate for answers…sadly :frowning:

Scott - The findings that you are citing are based on highly inaccurate testing. The below letter explains things well. It is written by a top Lyme expert. IMO, doctors who treat chronic lyme disease are true heroes. This is written by a brilliant doctor whom I had the pleasure of meeting and who has been saving lives for over 30 years.

"Physicians who have cared for persons with chronic
Lyme disease have faced harassment at a minimum and for
some, their careers have been ruined. Researchers who have
seriously dedicated themselves to the scientific study of
chronic Lyme disease in humans and/or animals have often
found themselves attacked or marginalized. To persist in
their researches would have resulted in virtual career
suicide and some have been forced, by exigencies of
survival, to leave the field. Laboratories that test
extensively for Lyme disease, including use of direct
detection methods such as PCR, have found themselves
subjected to concerted smear campaigns and harassed.
Whereas PCR is a well-accepted method in virtually all
other infectious diseases, its clinical use for Lyme
disease has also been marginalized. Direct detection
methods developed more than a decade ago by some of this
country’s finest physician-researchers and biomedical
research scientists (Dorward DW, Schwan TG, Garon CF.
Immmune Capture and Detection of Borrelia burgdorferi
Antigens in Urine, Blood, or Tissues from Infected Ticks,
Mice, Dogs, and Humans. J Clin Microbiol 1991;29:1162-1170
& Coyle PK, Deng Z, Schutzer SE, Belman AL, Benach J,
Krupp L, Luft B. Detection of Borrelia burgdorferi antigens
in cerebrospinal fluid. Neurology 1993;43:1093-1097 & Coyle
PK, Schutzer SE, Deng Z, Krupp LB, Belman AL, Benach JL,
Luft BJ. Detection of Borrelia burgdorferi-specific antigen
in antibody-negative cerebrospinal fluid in neurologic Lyme
disease. Neurology 1995;45:2010-5) have been moth-balled, I
believe, for political and medical socioeconomic reasons.
Seronegativity, a well-recognized feature of
spirochetal disease (e.g. in syphilis) is held to not need
consideration despite early recognition of this phenomenon
in Lyme disease, ironically, by a signer of the 2000 and
2006 IDSA Lyme disease guidelines (Dattwyler RJ, Volkman
DJ, Luft BJ, Halperin JJ, Thomas J, Golightly MG.
Seronegative Lyme Disease. Dissociation of T- and B3
Lymphocyte Responses to Borrelia burgdorferi. N Engl. J Med
1988;319:1441-6).
That there is no active support by the Federal
government for training programs for pathologists or
support for pathologic laboratories for in-depth pathologic
study of tissues from humans with chronic Lyme disease
using all available methods (and which, hopefully, might
develop new and superior methods) indicates a choice to
remain in ignorance. There could and there should be one
or more such laboratories of highest scientific calibre
where such methods could be made available to clinicians
and researchers and their patients, comparable to the Armed
Forces Institute of Pathology, which has been known for
excellence in the study of syphilis.
A key formative influence in the creation of the
National Institutes of Health was Metropolitan Life
Insurance Company (Harden VA. Inventing the NIH. Federal
Biomedical Research Policy 1887-1937.Johns Hopkins
University Press. 1986. pp.57-59,114 & 122). It would be
naïve not to consider the possibility of ongoing behind the
scenes influence of the insurance industry on N.I.H.
policy.
Honest review of the worldwide peer-reviewed
scientific literature reveals an abundance of evidence for
the existence of chronic Lyme disease in humans and
animals. Much of this evidence was presented to the Lyme
Disease Review Panel of the Infectious Diseases Society of
America on July 30, 2009. Regrettably, the panel chose to
sustain the 2006 IDSA Lyme Disease Guidelines. IDSA
leaders were defiant from the outset asserting the
Connecticut Attorney General could make them review the
guidelines but that he couldn’t make them change them. In
retrospect it was a serious strategic error to leave the
review process within the hands and ultimately under the
control of the IDSA itself.
The standard of care set by the IDSA 2006 Lyme disease
guidelines is one of medical neglect of persons suffering
from chronic Lyme disease. However, such guidelines are
indeed useful. They serve to shield from liability
physicians who neglect persons with chronic Lyme disease.
By misusing CDC case surveillance criteria as the sole
basis for a clinical diagnosis of Lyme disease, these
guidelines serve the insurance industry very well indeed
because such cases represent but the tip of the iceberg of
actual cases of Lyme disease, whether acute or chronic.
Denial of the possibility of seronegative Lyme disease,
likewise serves the insurance industry well and also such
simplistic constructs for Lyme disease also serve those
4
physicians who cannot wrap their minds around the true
complexity of this illness.
The medical profession and the United States Public
Health Service, predecessor to the CDC, have a long history
of medical neglect of persons suffering from spirochetal
infection. The profession and the USPHS were completely
unable to reform themselves from within in this regard.
It required moral and political intervention from without
to bring the Tuskegee Experiment to an end with Senator
Edward Kennedy’s hearings in February and March, 1973
before Committee of Labor and Public Welfare’s Sub-
Committee on Health (Jones JH. Bad Blood: the Tuskegee
Syphilis Experiment – a tragedy of race and medicine. The
Free Press. New York. 1981 pp. 213).
The Tuskegee Experiment involved about 400 subjects.
Lacking the taint of racism, nonetheless the “mainstream”
handling of chronic Lyme disease affects far more people;
it would be a fair estimate to say, Tuskegee X 10,000 in
the United States alone. Furthermore, the standards held
out by the CDC and the IDSA have worldwide influence.
Canadians are unable to get care for chronic Lyme disease.
We are seeing significant numbers of persons with chronic
Lyme disease forced to leave Canada for care.
State legislators have begun taking matters into their
own hands and the states of Rhode Island, Connecticut,
California, New York, Massachusetts and Minnesota have
passed laws or promulgated policies protecting physicians
who treat persons with chronic Lyme disease. Are these
legislators stupid? Are they dupes of Lyme activists? Or
can they see what is so obvious to the patients and to any
good clinician, that Lyme disease can be a chronic
infection that often requires a long-term treatment
approach? Furthermore, as the disease spreads and more and
more individuals are affected, legislator’s staffers, their
wives, their children and they themselves are experiencing
the effects of chronic Lyme disease.
In the fullness of time, the mainstream handling of
chronic Lyme disease will be viewed as one of the most
shameful episodes in the history of medicine because
elements of academic medicine, elements of government and
virtually the entire insurance industry have colluded to
deny a disease.
This has resulted in needless suffering of many
individuals who deteriorate and sometimes die for lack of
timely application of treatment or denial of treatment
beyond some arbitrary duration.
I am forwarding by mail copies of two of my abstracts
and several published articles concerning such individuals
for each panel member as I do not have these in PDF format
(Liegner KB, Rosenkilde CE, Campbell GL, Quan TJ, Dennis
DT. Culture-confirmed treatment failure of cefotaxime and
minocycline in a case of Lyme meningoencephalomyelitis in
the United States [abstract]. Programs and abstracts of
the Fifth International Conference on Lyme Borreliosis,
Arlington, VA, May 30-June 2, 1992. Bethesda,MD: Federation
of American Societies for Experimental Biology; 1992:A11.
& Liegner KB, Duray P, Agricola M, Rosenkilde C, Yannuzzi
L, Ziska M, Tilton R, Hulinska D, Hubbard J, Fallon B. Lyme
Disease and the Clinical Spectrum of Antibiotic-Responsive
Chronic Meningoencephalomyelitides. J Spirochetal and Tickborne
Dis 1997;4:61-73 & Liegner KB. Lyme Disease: The
Sensible Pursuit of Answers. (Guest Commentary). J Clin
Microbiol 1993;31:1961-1963 & Liegner KB & Jones CR.
Fatal progressive encephalitis following an untreated deer
tick attachment in a 7 year-old Fairfield County,
Connecticut child. [Abstract] VIII International Conference
on Lyme Disease and other Emerging Tick-borne Diseases,
Munich, Germany, June 1999 & Liegner KB, Shapiro JR,
Ramsay D, Halperin AJ, Hogrefe W, Kong L. Recurrent
Erythema Migrans Despite Extended Antibiotic Treatment with
Minocycline in a Patient with Persisting B. burgdorferi
Infection. J Amer Acad Derm 1993;28:312-4.).