Hi guys,
All of the Lyme disease posts have been moved to the “Other Illnesses” forum. Feel free to chat Lyme over there.
Thanks,
Scott
Hi Scott:
I respectfully disagree. The illnesses are related in that they mimic each other. And there are many folks on here who are very ill seeking answers (like I was).
Moving it to another, less mainstream, forum where it will be buried and forgotten isn’t helping people who are trying to get answers.
I realize it is a distraction of the conversation for folks who have true MAV. But this is a “General Discussion” forum, where I thought all topics were acceptable.
Hi bcb1200,
Last night every single post was getting taken over by ‘this coule be lyme. Get tested’. There is a reason why there are different categories on a forum. Just because you think more people are going to read it in the General Discussion section is not a reason to post it there and to not post it under other illnesses. If people are searching for answers and want to go down the Lyme route then they can look in other illnesses.
Hi,
Thanks for your input. This is a migraine forum first and foremost. The Lyme threads are anything but buried or lost. The first 8 threads in the Other Illnesses forum are all about Lyme disease with combined hits equalling over 5,000.
There’s no reason why a thriving Lyme discussion can’t continue there (as it clearly is) and no reason why people cannot go there to participate if they choose. It will come up on a Google search just as sure as if it was in this forum.
Thanks
I agree the Lyme was overtaking and it should be moved to a different section.
But perhaps it could have it’s own section titled Lyme Disease or at least have Lyme Disease as a heading under other illnesses - it’s not actually listed at the moment.
Yeah i agree. It was going Lyme mad. If people want to look into Lyme they know they can go to the other illness section and get some great advice.
— Begin quote from “missmoss83”
I agree the Lyme was overtaking and it should be moved to a different section.
But perhaps it could have it’s own section titled Lyme Disease or at least have Lyme Disease as a heading under other illnesses - it’s not actually listed at the moment.
— End quote
I agree. I think on this “General” board there should be a sticky at the top encouraging everyone to rule out all differential diagnoses including Labyrinthtis, Meniers, Lyme, etc.
And I lyme only section would be useful.
I wouldn’t go as far to say “Make sure you rule out other diagnosis” as a sticky though BCB…
We have to remember this is a MAV forum for vestibular migraine.
It’s tricky.
I think you need to be very careful with this ‘encouraging everyone to rule out all differential diagnoses’ I think if you have had an MRI and have been seen by top doc then you should accept your diagnosis. If after time you’re not seeing any improvement then maybe start to question your diagnoses with your doctor.
I believe Lyme is rare compared to Migraine associated vertigo so the chances are you have the correct diagnoses. Dr S who is probably the best MAV doc in the UK has only seen 5 patients who had Lyme. I think Lizzie might be the 6th. I think he told me that he has been doing this for over 10 years
— Begin quote from “robertgreen99”
I think you need to be very careful with this ‘encouraging everyone to rule out all differential diagnoses’ I think if you have had an MRI and have been seen by top doc then you should accept your diagnosis. If after time you’re not seeing any improvement then maybe start to question your diagnoses with your doctor.
I believe Lyme is rare compared to Migraine associated vertigo so the chances are you have the correct diagnoses. Dr S who is probably the best MAV doc in the UK has only seen 5 patients who had Lyme. I think Lizzie might be the 6th. I think he told me that he has been doing this for over 10 years
— End quote
Sorry…completely disagree.
There are 40,000 reported cases of lyme in the USA each year. The CDC estimates 9 out of 10 go misdiagnosed. That means 400,000 likely cases each year, 360,000 of which have no clue they have the disease. Instead, they are told they have Fibromyalgia, Chronic Fatigue, MS, Lupus, Parkinsons, Crohn’s, Meniers, Labyrinthitis, MAV, and some folks are just told it is all in their head.
The rates of lyme infection is much higher than rates for HIV, west nile, EEE, and most other infectious diseases.
Problem is most docs aren’t aware of this, including Dr. S.
He must be lying then!!
I don’t think it’s fair to guestimate numbers of likely cases.
Lets go with reported cases. That’s what counts.
The problem is there’s probably no figures for MAV right?
Bcb1200, why do you disagree that lyme is rare compared to migraine vertgo?
— Begin quote from “robertgreen99”
Bcb1200, why do you disagree that lyme is rare compared to migraine vertgo?
— End quote
I didn’t say it wasn’t rare to MAV. I said it wasn’t rare, period.
There is a perception out there (and here) that Lyme is rare. When in fact there are 400,000+ new cases a year 360,000+ who are completely unaware and told they don’t have it.
Again, 40,000 new cases reported each year in the USA. And the CDC estimates only 1 out of 10 cases gets reported.
— Begin quote from “missmoss83”
I don’t think it’s fair to guestimate numbers of likely cases.
Lets go with reported cases. That’s what counts.
The problem is there’s probably no figures for MAV right?
— End quote
Reported doesn’t count when the CDC clearly states that 9 out of 10 cases doesn’t get reported. You have to use estimated to get a scale of the problem.
Here is a handy chart: underourskin.com/sites/default/f … -2009.jpeg
The cart was put together by the team who made the film “Under Our Skin” but used CDC data.
— Begin quote from ____
I didn’t say it wasn’t rare to MAV. I said it wasn’t rare, period.
— End quote
Oh ok sorry that was my only point 
i am grateful i saw a posting about lyme on this mav board because i would have never known about it. i do have mav but i think i have another thing going on in my case.
i find out soon if i do have lyme disease and am thankful i learned about it here and for all the other knowledge i have gained here about mav.
I’m going to just say my piece and hope that it is respected as my opinion, and out of caring & not at all an attack. I think that posting about Lyme on here is actually irellevant. While some people who suffer from MAV might have Lyme too, which further effects their dizziness, Lyme disease alone would not cause the symptoms we all suffer from.
The doctors are not ignorant to Lyme, they are aware of it. Does it not hit home that the only way people are being diagnosed is by PAYING for a blood test over the internet? while i’m sure these tests are accurate, there is no way to prove that we wouldn’t all have an aspect of lyme from somewhere in our life.
My only point is that we all need to get better, but in order to do that we need to focus on one thing at a time. Worrying about the fact we aren’t getting better, and is that due to lyme, isn’t going to help. Yes i agree that it’s worth looking down that route IF you may have been in contact with lyme areas. . . but until you get to the stage of having tried all the meds, that seems an extra stress.
I have 3 other conditions and i don’t choose to suggets they might be the reason for my vertigo on here, although two of them are being invesigated. That is my only point, and i hope it’s understood.
WTC x
I respect your thoughts and know they are coming from a good place. you clearly know my stance so I won’t reiterate much. But, I did want to indicate that my husband, a neurosurgeon, was IGNORANT when it came to Lyme. now he is NOT. What he was taught was completely WRONG! What you are saying is just not true. All I can do is urge you to do your own research on Tick-Borne Illness and then see if you feel the same. Lyme and coinfections can most certainly cause these symptoms. If you don’t wish to research this further, I respect that as well.
And, I am all for Lyme posts being in one section. Think it is a great idea. However, the issue is that when people log onto mvertigo, so many immediately click on General Discussion and never even see the page where “Other Illnesses and Conditions” exist.