A Thought on Restoring Harmony

I for one, am deeply saddened to see so many good people who care so much about themselves and their board brethren at odds over the issue of what level of prominence Lyme should have on this forum. Losing great contributors like Muppo should be prima facie evidence that something is broken.

In my mind, the facts are that this IS a forum primarily dedicated to information sharing regarding Migrainous Vertigo and that needs to be preserved. Scott and others have worked too hard and have established a “brand” if you will to have its primary focus become less clear. At the same time, it is undeniable that over an admittedly small sample size there is a seemingly disproportionate number of people who are receiving Lyme diagnoses and responding to treatment. I also think Lisa is correct in that Lyme is going to turn out to be a larger problem than was originally suspected, but that remains, for the most part, to be seen. As I see an ancillary goal of the forum being to provide people who are suffering with the tools to inform their treatment and recovery, a more prominent, but not usurping, place for the discussion of Lyme for those with intransigent symptoms seems consistent with the overall mission.

Perhaps it would be a compromise to acknowledge Lyme as something deserving of a section separate and apart from “Other Illnesses” where it can be missed too easily. A separate “sticky” On the General Discussion page under the Topics section, say right below FAQs Answered by Neurologists, would allow those who see the topic to peruse and decide if they might benefit from discussion in that thread. Assuming she were willing, Lisa could be deputized to determine which posts from elsewhere in the forum would be worthy additions to that thread. The goal would be, in part, to have more direct access to Lyme discussion for those who wish, while seeking to keep the primary discussion thread to VM and related issues.

It would be great if we could find a way to accommodate both needs, place them in their relative positions, and get back to the business of great information sharing and support.

Just my views of course,

Andy

I agree. This conflict is really upsetting and I think that sounds like a very good plan.

I think that, at the heart of this issue there is pure well meaning goodness on both parts. Unfortunately, both Lisa AND Scott are trying to protect us all from making medical mistakes that can be life altering. At the same time, neither can be sure that their stance is absolutely the RIGHT one, as the research has not completely come to bear an answer as yet.

Lisa is convinced that Lyme is the culprit for many of our problems, and I understand that frame of reference. If you spend enough time researching Lyme you can find yourself becoming very paranoid about the disease and its carrying vectors (ticks). At the same time, the symptoms and problems associated with Lyme can be so vague that they can just as easily be explained by very real diagnoses such as migraine, multple sclerosis, mono-nucleosis, rheumatoid arthritis and others–not to mention the less well understood and often pushed aside diagnoses of chronic fatigue syndrome and fibromyalgia. Lyme is real, but evasive, and it is not always the reason for feeling dizzy or migrainous–though sometimes it very well IS the reason.

Scott, on the other hand, has quite a lot of experience and research supporting the existence of and treatment for VM, though this disorder was only recently recognized as “real” by the overarching medical communities that we now look to for treatments. VM was very recently as voodoo as is currently Lyme, chronic fatigue and fibromyalgia today. The greatest difference at the moment is the controversy over long term antibiotic use and its possible harm versus benefit to overarching human populations–the one receiving the treatment as well as the general population who can be infected by rapidly evolving bacterial populations adapting to the onslaught of constant antibiotic presence in their environment. Treating all VM as though it were possibly Lyme can be detrimental in many ways, dangerous to many, not just the one being treated–and if the disease at the heart of the issue is neurological in nature, the antibiotic treatments will achieve nothing beneficial beyond possible placebo effects in early treatment and could actually cause harm.

Both of these people want to help, and I appreciate their desire to do so. Here is where things get contentious–only doctors–whether they know the answers for sure or not–only doctors, who have the scientific and qualitative data regarding YOUR case in front of them have the ability, along with your input and guidance, to determine your diagnosis and treatment. We are all online–often thousands of miles away from one another, determining our opinions based off of biased, typed snippets of information shared in short spurts on this forum. Under no circumstance can a person tell you that what you are experiencing is definitively Lyme disease or definitively VM or definitvely anything else based on the information we share here. What we CAN do is offer our own experiences–and what I always liked about this forum is that it shared RESEARCH BASED INFORMATION from which we could all compare our physical experiences and share with our doctors/treatment providers. Personal biases, feelings and emotional toil aside, these RESEARCH based and EXPERT inputs provide information from which we can base our OWN thoughts and ideas and share them with our care providers. From there–Thank God, we have each other to comiserate on our personal experiences and weirdness–because Lord knows–this thing–Lyme, VM, MS, or whatever you’ve got–can be WEIRD.

When we are sick, we obsess over ourselves and our illness–and we see our own issues in everyone else. I believe that Lisa feels that her breakthrough is the answer for many because it has been her guiding light as late, and she eats, sleeps, breathes and spends all of her time surrounded by Lyme information. The one thing that frightens me about the Lyme issue is that, even when ALL evidence indicates that you don’t have Lyme (and I mean ALL)–there are many resources that will tell you that you do ANYWAY and that you simply cannot move on to other possibilities because it’s most likely Lyme and there’s just no way to find or fix it. That is possible–but with VM, it is also quite possible that you actually are not suffering from Lyme, but from migraine–and that there IS a treatment for you–and that holding on to the idea that Lyme is the ONLY possible answer will prevent you from ever moving forward and getting well. I think that it is possible that this has been Scott’s concern for us as well. It isn’t that he is “against Lyme” or the idea that Lyme exists, but is afraid that if everyone closes their eyes to the possibility that it could be migraine that they close their eyes to a very good chance of successful treatment over time.

And, Scott–please know that if I have spoken for you and have done so incorrectly, I apologize (you as well Lisa).

If there were an actual area for Lyme–and people could go there of their own free will and not be “culled” and/or recruited–and if the area were filled with information that illustrated research based details helpful to those who may be experiencing neurological symptoms of lyme–I think it would be a service. But it is difficult–as there are a lot of cultish based “research” beds out there as well. Research for Lyme needs to come from sources that are agreed upon by experts in the field–as have those that have been reviewed and agreed for the VM site.

In my humble opinion–these do not reflect the opinions of anyone but myself–please do not think of this as anything but that…

Yours,
D

Hello everyone,

Just my 2 pennies worth…

  1. LISA
    I can see why Lisa got suspicious about her PMs not going through. But I do not agree with her subsequent rant calling out Scott. That was wrong, though given the history, not unexpected. However, like Dolf perfectly states, I strongly believe that Lisa as well as Scott, are both very passionate people- passionate about their condition and about helping others. It’s important not to confuse this passion and desire to be well, with anything other than that. In the context of an internet forum, these things often unfortunately explode in this way as we rely on non-verbal communication.

In Lisa’s defense however, I would like to say that I have seen an entirely different side to her- she has been extremely willing and open to talking to me about Lyme, and I credit her with helping a lot of people if they decide to go down the Lyme testing route. I am thankful to her for that and I know there are others on this forum that are too.

I am also thankful to Scott for creating this forum, and for also being a source of enormous knowledge and kindness.

  1. LYME ON THE FORUM
    I agree with Andy. I would like to see a Lyme section somewhere on the main page, not hidden in other illnesses. Though I understand it IS an ‘other illness’ perhaps we could make it less of something to have to dig around for. Maybe an announcement on the main page to look in ‘other illnesses’. I’m not sure.

3)SCARING OFF NEWBIES
Forums flare up like this regularly, however it’s not great to scare aware newcomers. What I don’t see as helpful is making loads of threads about leaving or about the topic- this is only impounding the subject, particulary the threads about leaving- just leave if you want to- you don’t need to announce it thereby bringing further attention to the subject/fuel to the fire. I feel it’s a little selfish. Can we try to stick to one thread perhaps and move on? How would you feel if you were a new person visiting here? You are sick and want advice.

My head hurts. :-s

MM
X

— Begin quote from "missmoss83"

3)SCARING OFF NEWBIES
Forums flare up like this regularly, however it’s not great to scare aware newcomers. What I don’t see as helpful is making loads of threads about leaving or about the topic- this is only impounding the subject, particulary the threads about leaving- just leave if you want to- you don’t need to announce it thereby bringing further attention to the subject/fuel to the fire. I feel it’s a little selfish. Can we try to stick to one thread perhaps and move on? How would you feel if you were a new person visiting here? You are sick and want advice.

— End quote

MM whilst you’re entitled to your opinion on the posts on this site, I can assure you my post about me leaving the forum is anything but selfish - what do I have to gain? If you want to make comments like that, do so in a PM to me directly. Newbies reading my post is nothing compared to them reading the posts between Scott’s fan base and Lisa’s fan base and the war they’re having with each other. If you dont want to ‘compound’ the subject, then dont comment. Period. It was a big decision for me and if I want to let other people on here, who I care about and try to help, know that they wont find me so readily available, I will do so.

Andy, I appreciate your words and fully support a section dedicated to Lyme and fully support Lisa managing that section (assuming her ‘embargo’ gets lifted).

Scott this is something, as owner of this site, I think you should consider seriously. It would be good to see you and Lisa as a united front focusing on different areas rather than coming to this site to see you both at loggerheads. I want to be part of a forum where we’re all trying to do good by each other, not tearing strips. Its extremely upsetting.

Andy, maybe if this gets approved, you would be so kind as to keep me informed? Dolfnlvr - also well written, thank you.

Peace out - Muppo x

An harmonious resolution would be wonderful!
Barb

@dolfnlvr - what a fantastic summary! you have put into words exactly what I have been trying to and couldn’t this past few weeks. Thank you for that.

@muppo - I do not want to cause any friction here, but using the term “war”, in my view is totally incorrect. This is not a war at all. Lisa has an extremely biased view on Lyme which she has tried to force on everyone that she possibly can and Scott has tried taking a diplomatic approach to the whole situation.

I do not believe a “united front” is the correct way forward either. This is not a forum about Lyme, this is a forum about Migraine and its vertigo equivalent. If we make this united then we better bring in all of the other neurological illnesses as well… fibromalgia, parkinsons, MS etc… then the forums will turn into healthboards.com. We are then totally missing the point of the forum in the first place.

I am not convinced about this Lyme epidemic admittedly, but if it turned out that Lyme was the reason behind all these weird symptoms I would be fully behind it. Until that is proven, however, we have to try getting treated for what we know and have been diagnosed with.

Lyme has its hundreds of various websites and forums out there as well as the possibility to post in the “other illnesses” section of these forums.

In my view this forum has been managed in the most diplomatic way possible, but I think the correct action has been taken now due to the severity of the continued persistence of the Lyme community

Thanks Scott for your continued effort and time on this amazing and informative forum :smiley:

— Begin quote from "Muppo"

MM whilst you’re entitled to your opinion on the posts on this site, I can assure you my post about me leaving the forum is anything but selfish - what do I have to gain? If you want to make comments like that, do so in a PM to me directly. Newbies reading my post is nothing compared to them reading the posts between Scott’s fan base and Lisa’s fan base and the war they’re having with each other. If you dont want to ‘compound’ the subject, then dont comment. Period. It was a big decision for me and if I want to let other people on here, who I care about and try to help, know that they wont find me so readily available, I will do so.
Peace out - Muppo x

— End quote

Sorry I thought you had left?

You’re not the only one who announced their departure. And I’m not the only one who said this action is selfish.

So much for ‘peace out’.

Richy,

With all due respect, the difference is that it would be hard to find a neurologist who was not familiar with the implications of MS, Parkinsons, etc., so one can be confident those are being taken into consideration in the ordinary course in a workup relative to vertigo. Lyme is not in the same category, ESPECIALLY for those outside of the US. Planting a seed for those who are grasping, without suggesting Lyme should become the focus of the forum, does not seem to me to be unreasonable.

Just my view,

Andy

Hi All,

Thanks for the thoughtful replies. Much appreciated. This is what is happening:

  1. Lisa will no longer be a member here. She’s gone. I had no problem with her talking about Lyme disease as a topic even when she was wayward on her reinvented definitions of migraine and her over-the-top characterisation of Lyme disease. Over the months, however, she has become increasingly rude, disrespectful and a pain in the ass – not just to me. The forum does not need that nor will it be tolerated any longer. It’s time for Lisa to consider creating her own platform where she can promote whatever it is she wishes to tell the world.

  2. Lyme disease will remain in the Other Illnesses forum. There is no excuse for people not finding this information either by searching the forum itself, using Google which is how people first arrive here or by simply clicking the Board Index link and exploring the other forums. Muppo went to great lengths to organise it after all. There are literally thousands of Lyme posts here now, all of which are indexed on Google. Don’t be lazy. Do a search for “Lyme migraine vertigo” and look at the top hit. Lastly, if the people here who believe they are dealing with Lyme disease want more discussion in the forum, use it! I haven’t seen any activity in the Other Illnesses section for weeks – possibly 3 months. I have specifically set up an area there under Announcements where people who say they have Lyme disease are listed so that we can observe their progress over time.

  3. People, particularly women, who present with unexplained vertigo, dizziness and other strange neurological symptoms should begin by investigating migraine FIRST once other common central and peripheral causes have been ruled out such as BPPV, vestibular neuritis or MS by a medical specialist and not an alternative quack. I had a recent PM from someone who was about to fork out $1000 for a Lyme test before she had even been checked out for migraine. This is NOT a good outcome and definitely not best practice – and was the result of what she had read here from guess who? Something to keep in mind.

This forum is vibrant and healthy thanks to all of you and remains well-respected by organisations such as Johns Hopkins. I will do my best to keep it that way in an effort to get migraine education out to as many people as possible. I’m certain we will now see and end now to the negativity that was becoming too problematic.

Best all,
Scott

— Begin quote from "missmoss83"

Sorry I thought you had left?

You’re not the only one who announced their departure. And I’m not the only one who said this action is selfish.

So much for ‘peace out’.

— End quote

Yawn. Goodie for you :slight_smile:

RichyF - I couldn’t disagree more. But hey, we are where we are now.

Banning Lisa was over the top and could’ve been managed way more effectively and privately. Scott, what was the point of ‘locking the PM thread’ when if you don’t want everyone reading this crap - why not delete the entire post? There have been plenty of derogatory attacks of Lisa posted that then get conveniently edited and deleted afterwards so thus just leaving her responses shown and painting her in a worse light. If y’all want to write stuff about each other - leave it up or don’t write it at all.

— Begin quote from "apace41"

Lisa could be deputized to determine which posts from elsewhere in the forum would be worthy additions.

— End quote

Sorry, but you’d have to pull my cold dead hands off my Mac before that day ever came. Mvertigo would turn into the Walking Dead of Lyme lunatics within weeks. I wouldn’t let Lisa moderate a chook raffle let alone a forum on mvertigo.

— Begin quote from "Muppo"

… thus just leaving her responses shown and painting her in a worse light.

— End quote

Nonsense. Let me take a wild guess who briefed you before you wrote this bollocks … :shock:

Muppo – I am really over these pointless, junk posts on the forum that you are now becoming a major contributor to. I’m trying to move us on from this ridiculous episode as are many others. These are exactly the types of posts that keep bringing down the mood here that you were complaining about to begin with. Garbage in = garbage out.

I’m leaving that thread there so that people can see why MAVLisa finally got the trap door. If it is removed all kinds of bullshit will be written about how Scott is against Lyme disease and so banned Lisa or Scott was mean to Lisa and said this or that … yadda, yadda and I’ll waste endless amounts of time explaining the same thing over and over again.

— Begin quote from "Muppo"

Lisa … could’ve been managed way more effectively

— End quote

I don’t work at this forum in my free time to manage someone’s bad temper, paranoia and obnoxious behaviour. It’s an adult educational support forum, not a kennel.

This is just dirty laundry. Her banning is final, action I should have taken in May.

— Begin quote from "Muppo"

— Begin quote from "missmoss83"

Sorry I thought you had left?

You’re not the only one who announced their departure. And I’m not the only one who said this action is selfish.

So much for ‘peace out’.

— End quote

Yawn. Goodie for you :slight_smile:

RichyF - I couldn’t disagree more. But hey, we are where we are now.

Banning Lisa was over the top and could’ve been managed way more effectively and privately. Scott, what was the point of ‘locking the PM thread’ when if you don’t want everyone reading this crap - why not delete the entire post? There have been plenty of derogatory attacks of Lisa posted that then get conveniently edited and deleted afterwards so thus just leaving her responses shown and painting her in a worse light. If y’all want to write stuff about each other - leave it up or don’t write it at all.

— End quote

I think you’ve successfully shown your true colours darling, well done.

Woooo maybe you can campaign for my ban darling MM. Yawn yawn.

Thread closed.

Hi Muppo,

It’s been ages since you’ve been on the forum (which maybe is a good sign that you’ve recovered!!) but I was curious if you are still on gabapentin (or do you take it with something else)?

I just started out with gabapentin after two failed trials with topa and nort (I couldn’t take them because of side effects).

I think it’s doing some good stuff already at 100mg 3x a day but I think I’m going to have to go higher to get more relief…

Best,
Liv