Update

Specific Illnesses & Conditions
21

The Lyme debate really does confuse the s**t out of me. The description for the video Lisa shared does sound like something from the x-files

“The truth about Chronic Lyme disease and evidence proving that Lyme disease was created by the government and leaked into Connecticut, spreading throughout the rest of the country.”

Hard to take anything seriously when you hear of it described like that.

Still people who end up going down a different path do so because they are looking for hope when the current medical practises fail them. I know my Lyme diagnosis has left me really confused. I am still pursuing my Mav diagnosis for now and also going to see a rheumatologist.

I think posts like this are good. I like to get both sides from people who are passionate about their different views.

22

Hi guys,

A recent article (3 Sept 2013) from Science-Based Medicine written by Dr Harriet Hall.

[size=130]Does Everybody Have Chronic Lyme Disease? Does Anyone?[/size]

“The belief that chronic Lyme disease exists is not supported by the evidence. It is a disservice to patients with unexplained symptoms to paste that label on them and treat them with potentially harmful long-term antibiotics. They are suffering, and they deserve our compassion and the best that science-based medicine has to offer, not bogus treatments by charlatans or well-meaning but misguided LLMDs.”

There’s a lot of comments (730+) to read after the article.

http://www.sciencebasedmedicine.org/does-everybody-have-chronic-lyme-disease-does-anyone/

This is a very good read and linked from the article. It helps us to understand the psychopathogenesis of this type of disease thinking in the desperate, hopeless and vulnerable.

[size=130]Contributions of Societal and Geographical Environments to “Chronic Lyme Disease”: The Psychopathogenesis and Aporology of a New “Medically Unexplained Symptoms” Syndrome[/size]

In the final analysis there is a struggle over who defines a new and emerging disease: patients, their chosen clinicians and advocacy groups, or the biomedical establishment’s physicians and scientists. It is clear that the scientific community faces a formidable challenge. Unexplained suffering and fear of the unknown are far greater than fear of even the worst, incurable disease and drive these patients to extreme measures. Dealing with the phenomenon of chronic Lyme disease, a new constituent of the MUS syndromes complex, requires an appreciation of its complex psychopathogenesis. We need to appreciate and study the aporology of MUS conditions— to describe and heal the sense of being lost, hopeless, and vulnerable.

Scott

23

— Begin quote from “nabeel”

Scott - the link does not work for that book

— End quote

Thanks Nabeel. I guess it’s only free if in Australia! I’ll see if I can copy some bits out of it and paste it here. Will get to it tonight hopefully. Thanks

24

BB,
why are you continuing mavlisas conspiracy theories, are you one and the same person?
are you all from lymeville too
I like this forum precisely because it doesn’t go off to lala land
It’s hard enough not to come across like a nutcase in everyday life
maybe you feel this gives you purpose but it’s actually a drag.
I’ve been bit by ticks, i’ve had a round red rash on my leg like psorias
but i’ve also been bit by a dog and i don’t have rabies
pumping yourself full of antibiotics you’re just contributing the the rise of drug resistant superbugs,
which is bad news for those who actually require these drugs

25

— Begin quote from “Rebzi”

BB,
why are you continuing mavlisas conspiracy theories, are you one and the same person?
are you all from lymeville too
I like this forum precisely because it doesn’t go off to lala land
It’s hard enough not to come across like a nutcase in everyday life
maybe you feel this gives you purpose but it’s actually a drag.
I’ve been bit by ticks, i’ve had a round red rash on my leg like psorias
but i’ve also been bit by a dog and i don’t have rabies
pumping yourself full of antibiotics you’re just contributing the the rise of drug resistant superbugs,
which is bad news for those who actually require these drugs

— End quote

BB and MAVLisa are not one and the same person, however I share your other concerns.

What I have seen on this forum, having been here for a while, and which concerns me, is a pattern. Every now and then there is a fashionable new cause for what ails us, instead of migraine. Right now it’s chronic Lyme, in the past it’s been maladjusted hormones, CSF leaks, misaligned necks and any number of things. Predictably, proponents of these ‘causes’ are always indignant or outraged that others don’t share their insight into the ‘true’ cause of their migraine symptoms. Chronic Lyme has the added bonus of being a worldwide conspiracy. Frequently Big Pharma is involved, quite often toxins, medical science has failed us, yada yada yada. Not surprisingly the treatment is equally as radical - in this case it’s long term antibiotic use which, as you point out, is bad news for everybody.

I’m not a fan of this idea that there are ‘both sides’ to this debate. That implies that there’s a 50/50 split on accuracy, validity and medical consensus and there’s just not. It’s a false dichotomy. And no amount of passion in the claims made by individuals will tip the balance.

Chronic Lyme is a fringe diagnosis not supported by mainstream medicine. Ditto long term antibiotic use. It’s that simple.

What puzzles me is the psychology of the convert. If someone has truly found the cause of their own suffering that is great, but the vast majority of us on this board have vestibular migraine. It’s a vestibular migraine board, after all.

26

— Begin quote from “Rebzi”

…pumping yourself full of antibiotics you’re just contributing the the rise of drug resistant superbugs, which is bad news for those who actually require these drugs

— End quote

This is an extremely important point Rebzi raises that I think gets easily lost in all of this. It’s so incredibly irresponsible for these Lyme literate whatevers to be loading people up with abx for months on end.

“The World Health Organization has identified antibiotic resistance as one of the greatest threats to human health and today … relatively few of us understand how our behaviour – our misuse and overuse of antibiotics – contributes to the problem of resistance … it’s clear that we all need to rethink the way we use antibiotics or we risk losing one of the most important advances in modern medicine less than 100 years since its discovery."

http://www.nps.org.au/media-centre/media-releases/repository/Join-the-urgent-fight-against-antibiotic-resistance

S

27

Agreed that people who overuse anti biotics will develope resistance to it and subsequently it can become dangerous for them. What about the big pharma companies that r promoting the safety and use of anti depressants? They are being prescribed like candy in the United States for minor issues and to kids as young as 6 years old(i read this an article). Why isnt anything being done in medical field to stop this?

28

Scott, if you can’t be 100% sure about LD how can you be 100% sure that VM/MAV exists? There is no testing, it is simply based on symptoms that we get a diagnosis of MAV. I understand this is your forum and you have put a lot of effort into it, and everyone appreciates that here I can tell. But everyone just wants to get better, and if someone has pursued Lyme as a last resort and is now getting better with ‘Lyme’ treatment, isn’t that all that matters? So many people on here are on treatment for VM and aren’t getting any better, are spending all this time going through med after med after med. We just want answers and to get better. If it is simply VM then why do people not always get better through migraine preventative treatments?

BB - In one respect though I think if you do have Lyme, then a Lyme board is a better place to be on. Not a Migraine Board, especially when there is so much animosity and hostility about LD. I’m sure you’re already on other boards and thank you for the update but sometimes arguing black and blue is just not worth it. If you know in your heart that you have Lyme, that’s great and I am happy for you to be getting the help and treatment that you need. But maybe other than the occasional update, this forum isn’t the right place for you anymore. Especially when there are people practically telling you that the reason you are sick isn’t valid.

x

29

Katie,
I couldn’t have said it better myself. Thank you. If anyone here ever does want to peruse Lyme disease please feel free to message me … I am willing to share my story and success!
Mm thank u for your kind words!! Xo :slight_smile:

Wishing the best for all,
Lisa

30

Hi Kate,

What I meant is that in life there is always a degree of uncertainty about everything. I was talking in the scientific sense. Even something as solid as the theory of gravity could have additional understanding added to it down the track that we don’t know now. However, gravity is there. It is fact. There is a mountain of evidence behind it that has accumulated for centuries.

Migraine is also fact and there is a mountain of evidence that supports it as well as expert opinion from specialists and scientists who have studied at university level and have continued to expand on the accumulated knowledge over at least 100 years. Chronic lyme disease on the other hand is not supported by science and evidence. As Victoria very clearly explained it is another nonsense diagnosis put out by an industry of self-appointed so-called lyme literate doctors. The notion of being “lyme literate” and to suggest that an actual specialist in infectious disease is not is totally absurd in the extreme yet people buy into this. The people who are usually most prone to getting sucked in in the migraine community are the ones who are having the toughest time reining in their symptoms. I really do understand how this can happen because it happened to me as well with a “Migraine Cure”. If you read the paper I posted above it discusses the psychopathogenesis of this phenomenon.

Nobody said solving migrainous vertigo was easy. For some it’s not and so the temptation despite the evidence and the advice of specialists like Baloh is to look for something else. Desperate people want something more tangible to hang on the wall and say, yes that’s me. And so, in the current climate, a test like Igenex becomes that compelling piece of paper for them even though it is not a reliable test (it reports positive results for Lyme disease that can’t be confirmed by other labs).

Finally, BB’s case is particularly jaw-dropping - to me at least - because she represents the near perfect migraine patient. Hers was not a particularly tough case from what she has written here over the past year. It’s this simple: the history is there, she was diagnosed by a specialist and then responded extremely well to a migraine medicine, Topamax. She felt so well, she forgot she had VM. That’s a slam dunk and yet, incredibly, she has been made to believe that she should instead be loading her body up with antibiotics for months and months, a potentially dangerous therapy for a number of reasons. I don’t know how I can explain this more clearly.

Scott

31

There are a group of Lyme people posting on so many forums that is tiring for those who truly need support of other things. Lyme does not cause everything.
If you have Lyme, you can still have MAV.

It seems like they get together and post to one forum or another until people get tired of them and they get asked to kindly stop or move on.

Thank you Scott for trying to maintain.
S.A.L.

32

Thank you Scott for trying to stop this lyme theory. I think so many forums I am on regarding MAV have been overtaken by lyme. I still would love to hear a success story. I did read much of what you posted and tried to understand the links to the studies. I agree that even if you have lyme, the idea of an active infection that can be treated by antibiotics, is unlikely. I think one of the papers explained that the symptoms some of us are experiencing would be more of the result of having had lyme in the past. And in that vain, lyme can cause migraine or other weird symptoms, but there is no active infection to treat. Just symptomatic treatment such as the MAV meds. Is this rationale correct? trying to understand this confusing subject and I do think it is great we are discussing this here. The MAV facebook site also has lots of lyme posters that are definitely causing a lot of confusion over there fyi.

33

— Begin quote from “rockergrl”

And in that vain, lyme can cause migraine or other weird symptoms, but there is no active infection to treat. Just symptomatic treatment such as the MAV meds. Is this rationale correct? trying to understand this confusing subject and I do think it is great we are discussing this here. The MAV facebook site also has lots of lyme posters that are definitely causing a lot of confusion over there fyi.

— End quote

Thanks Rocker,

It’s certainly plausible that Lyme disease or ANY bacterial infection or other disease could be acting as a complicating cofactor for a chronic migraineur. This is standard migraine management and is something a specialist should help a migrainuer to assess. The key here is that it could act as a trigger; it does not cause migraine. If I lived in an endemic Lyme area and had good reason to think I had a Lyme infection complicating my migraine problem (i.e. had other very clear non-migraine stuff going on – for example I might have had a rash or have ongoing joint pain) I would simply get tested by validated testing. If it came up positive I’d follow the guidelines and use antibiotics for the specified amount of time (around 4-6 weeks max I think it is). And then I’d be done. However, I’d have to have something really compelling going on to make the jump to Lyme disease. As was said earlier, just because a dog bites you doesn’t mean we’ve all got rabies.

Yes, I know FB has been saturated by the Lyme army. It’s unfortunate because some get sucked into the vortex.

S

34

— Begin quote from ____

At times your assessments have seemed to me to be very VM-centric - where everything that everyone is feeling is being caused by VM.

— End quote

Thanks for your thoughts on this LOVE. I’d like to know where you think I was “VM-centric”. I do my best to lay down my argument based on evidence and expert opinion not based on any bias (at least as best I can) or trying to win any points. I just don’t care about that. If I’m wrong about something that as far as I know is factual, I will freely admit it because I learn too. If you see bias in what I have said I want to know about it. If suddenly we found out tomorrow from some massive amount of new compelling evidence that this was not migraine, I’d simply change my mind. I’m not wedded to this.

Look, I certainly don’t think everything ailment in this world is migraine, that would be absurd, but the evidence stands very solid that the vast majority of people that show up with unexplained dizziness – especially females – who have had other peripheral and central causes excluded (a neurological examination and that may include brain MRI, CT of the temporal bone, vestibular testing, audiological testing, etc) by a specialist are almost certainly dealing with migraine. That’s not my opinion or bias. It’s fact. People who have trouble treating the disease tend to venture off into alternative explanations that Baloh advises to avoid for which there almost always isn’t isn’t one and they waste their time and money. I’ve seen it over and over and over again for years on this forum and the Healthboards forum.

Sure I cannot make someone see the light and that’s OK but what I don’t like happening here is people spreading misinformation like BB has done on two occasions. That’s essentially what kicked this off in this thread. There’s an entire internet of that junk out there. We definitely don’t need it here.

S :slight_smile:

35

— Begin quote from ____

At times your assessments have seemed to me to be very VM-centric - where everything that everyone is feeling is being caused by VM. When I first came on the site, that is what I thought about some of the things you had said. I understand more of what is being said now, and when you follow someone’s comments on this site, I supposed you can present a logical assessment…but everyone has to know that you are not the last word in the matters and I know you know this too. It seems like some people are coming at you with the attitude that you misled them, because you sound so confident in the matter. Well, simply put, it’s their responsibility to weigh things out and decide for themselves.

— End quote

LOVE, if you refer to Scott as VM-Centric, I am lead to believe that you have completely misunderstood Scott and his mission here. If you’ve been on mvertigo for as long as many of us, you would know that he is a man of principle, integrity and science. He is 100% NOT biased. The statements that he makes are not his opinion. They are strictly based on scientific and factual evidence that he so rigorously gathers for all of our benefits. And to compare him to a parent of a grown child is quite accurate. Because a concerned parent would always try to help their child no matter what. They don’t just give up or “chill out”. Parents always have a responsibility to help their children. For example, if I had a grown son who is a drug addict, would I suddenly quit trying to help him simply because he does not listen? No, I would never give up. I would continue to find out how I could help him. My pursuit would be relentless. Scott is like that with us and like many grown children, some will not listen. But those of us who do have benefited immensely from his relentlessness. And if he can help some of us sort through the confusion, than he has done all of us an invaluable service. This is our lives and our health we are talking about.

I’ve seen so many people on here get sucked into other diagnosis and eventually come back here even more frustrated and down. Believe me, I can personally understand how when you are feeling as sick as many of us get, you become completely vulnerable and desperate. That desperation can lead us down a different path. I get that! And so I don’t fault anyone for doing that. Whenever this happens, Scott will go in search of answers. His opinion on Lyme is based on scientific facts or in this case, the lack of scientific evidence. He is not married to VM. I guarantee you if someone comes to him with compelling evidence that what we all have is something different, he would be the first to accept it. But VM is not a mystery diagnosis. It is NOT HARD to diagnose someone with VM. It is actually quite common. Its certainly complicated to treat, but not hard to determine if we have it. It is a diagnosis of exclusion, family history and easily identifiable symptoms. So to try and go down an alternative path, is not going to be beneficial to most people.

When I say that VM is easy to diagnose, this is not my opinion. This is based on what I have learned from one of the top MAV docs in the world. He said to me, “Migraine Associated Vertigo is easy to diagnose and complicated to treat” So when I hear people that constantly question what they have when their symptoms are so obvious, it baffles my mind. I had a lot of confidence in Dr. Fife. Him plus finding mvertigo truley saved my life. The plethora of information here and feeling confident that they came from factual evidence assisted in my getting well. Here is an article that Dr. Fife wrote about MAV that I find very informational and easy to read.

Scott is not trying to be right or have the last word on something. He is only trying to report the facts. And as the admin to this site and someone who cares, he holds up to his responsibility to feed us with the facts. And I for one hope he doesn’t get derailed by those type of comments because his wealth of information is priceless and can help so many people. I too love that we are engaging in this conversation about MAV vs. Alternative Treatments/Medicine. I have personally learned so much and continue to learn more.

Peace

36

Honestly … Everyone needs to chill out
Love your attitude is horrendous… I had to bite my tongue and not say anything to you the last time you said something.
This entire thread is bogus… Move on and realize I am getting well with this treatment even if you don’t approve !!

37

Hi Love,

No one said or thought anything you wrote was hostile. Not sure why you might have thought that. I didn’t get that at all from your earlier post. I was just curious why you had the feeling or feeling of tone you described and the VM centricity and you explained it. I don’t think I brought up anything personal about BB that she hasn’t written to everyone here before. It’s nothing new or weird. I made the comment to explain to Lou why I thought her case was particularly concerning.

If I said “useless statement” (I couldn’t find a specific example but might have said something along those lines) it would have been in response to someone saying something like “MAV is Lyme, MddS is Lyme”. Those sorts of comments are nonsense and really really unhelpful. That is probably what I said. I stand by that.

I think we can all safely say that 2013 has been the year of Lyme disease in the MAV community. :? It’ll pass. It always does.

38

I’m sorry love but it just sounds like you’re going round in circles. The only person that is arguing with you is you! I don’t see any hostility towards you at all on this thread. So I’m a bit confused where your hostility is coming from.

It saddens me to hear anyone say that when they visit this site and hear people complain of their sufferings, you no longer want to read. That person may desperately need a word of encouragement or glimmer of hope at that moment. This is a source for support. I can attest to getting the most incredible support here. It really helped me get through some unbearable days where I was bedridden and paralyzed by this terrible illness.

This is an ugly illness. The best thing we can do for each other is not argue and really reach out to help one another. Like Todd said, “Make love, not MAV”. Haha

39

Love,

This is definitely dirty laundry now and OTT. You are now yelling in bold caps. Time to be removed from the GD forum. There is nothing hostile about Mavprincesse’s posts.

I only wish to respond to this:

— Begin quote from ____

You: It is NOT HARD to diagnose someone with VM
Me: If this were the case, so many people wouldn’t be having so much trouble getting a diagnosis. I see it plenty on the site.

— End quote

I agree with what Fife is saying here and glad MP raised it by linking to that paper for us again. Of course not every case is crystal clear (though ironically BB’s case appears to be) but a neurologist who knows his or her stuff will usually see it and not be thrown off by all of these alternatives that pop up here from time to time. In the past the bigger problem was being misdiagnosed with Meniere’s and then being subject to a potentially irreversible procedure. Not totally surprising because VM and Meneiere’s closely resemble each other in the early days of Meniere’s.

It’s the treatment that can be most challenging and why so many people are here trying to manage this better. There’s also an element of people learning to accept that they are migraineurs in the first place and why some specialists direct their patients here to read others’ stories. It helps to counter the migraine denial. There’s likely a whole sea of people out there who respond well to treatment and move on with their lives. I don’t think mvertigo is any way representative of the migraine population as a whole (approximately 1/3 of whom experience vertigo).

S

40

Chocolate anyone?