Good luck Lizzie and hope you see improvement from the antibiotics. I am glad the appt was worth it and I know you will keep us all informed of your progress xx
Good luck Lizzie and MavLisa too. I have to say that I have been watching the lyme threads so carefully as I am only getting a teeny bit better over time and am looking for answers too. I don’t have the means to go to US lyme docs and the ones that will see me with insurance say I don’t have lyme and that treatment after the intial stages with antiobiotics doesn’t make sense. This one doc told me that even if I did have lyme which according to my blood tests they did indicate I did not, would be fruitless with antibiotics, and that I should just try to treat the symptoms I currently have. I then tried to find evidence based on science and asked a friend who is a PhD and has access to such papers and he said that no studies show long term antibiotic use better than placebo when chronic lyme was looked at. I don’t know the details of these studies but I found this very upsetting as I too am desperate. Maybe there are just not enough people with lyme fighting for this? I don’t know. But I think that for now I hope that Lizzie and MavLisa prove the research wrong and then maybe lyme should be in the diagnostic options for MAV.
Rockergrl - thank you very much. If you are up for reading, I would read, “Cure Unknown,” by Pamela Weintraub or anyone that wants to learn more about the history to this controversy, testing, diagnosis, treatment, reasons lyme causes multi-systemic issues, etc. It reviews research throughout 30+ years. If anyone does end up reading this book, I am very curious to hear what you think. Rockergrl - completely understand what you are saying. My husband and I thought the same exact thing, but obviously do not any longer. This also helped me to understand the reasoning behind the controversy by looking at both sides. lymeinfo.net/hearings.html
And, of course, if you do not wish to research further, I completely understand. Good luck to you as well!
In a similar vein to what Victoria has said, I wanted to mention that though many neurological symptoms can be attributed to the mechanism of migraine acting within the brain, such as pins and needles, muscle twitches, fatigue, visual disturbances etc, these symptoms can also be caused by a wide variety of other pathologies. Muscle twitches can be caused by MS and Parkinsons etc.
So rather than look at a set of symptoms, it seems more sensible to look at the underlying cause. In me the underlying cause is clearly Lyme, it may be triggering a set of symptoms attributable to migraine and even migraine type activity in my brain., but the root cause/trigger is the Lyme bacteria. I think that’s what makes migraine such a frustration as there is no definitive diagnostic test, it is a diagnosis of exclusion, so the genetic links, previous classic migraine etc need to be considered. As the exact physiological mechanism of migraine is not fully understood the Lyme bacteria may even be causing the exact same processes within the brain to occur (such as blood vessel spasm and depression at a cortical level)…so for this reason even if people on this forum have an identical set of symptoms to me it doesn’t mean they have Lyme disease…mine was discovered in the context of my risk of exposure and my positive blood tests…I wouldn’t have even looked into it if it hadn’t been for my risk of exposure and my non-response to migraine meds…hope this makes sense!!
L xx
P.S thank u all so much for wishing me luck. xx
— Begin quote from “RichyF”
From a scientific point of view isn’t Lyme more feasible than VM? VM is a diagnosis of exclusion and patient history, which means there is no 100% test to prove you have VM, only a very likely diagnosis.
From this point of view, the fact that you can test for Lyme is possibly more accurate than a VM diagnosis???
— End quote
Hi Rich – just because there isn’t a “migraine medical test” per se doesn’t mean it is less plausible than, say, Lyme disease. In fact, the opposite is true when comparing these two when trying to figure out the root cause of vertigo and dizziness once the other potential peripheral and central causes are ruled out (e.g. BPPV or MS).
Science has isolated migraine genes and continues to do so. While the mechanism of migraine is not fully understood at every level, it is understood broadly enough to make sound recommendations on how to manage it very well for most people (i.e. trigger avoidance and migraine lifestyle) and which meds to take. For example, Verapamil is a calcium channel blocker. Migraine is thought to be a channelopathy for some and it so it works for some people, better for those with aura. And then of course there are very strong indicators that are practically diagnostic for this such as a woman’s period setting it off and migraine in the family or episodes of light and/or sound sensitivity. At the end of the day it is differential diagnosis that will get you to the answer reliably most of the time.
There is also very strong epidemiology for migraine. We KNOW that it affects a large percentage of the population whereas Lyme disease does not by comparison (orders of magnitude of difference here). Migraine has been documented for thousands of years. It is extremely rare for Lyme disease to produce dizziness – that according to Prof Rauch and colleagues. Given the large prevalence of migraine I’d be much more inclined to believe that a person with proven Lyme disease who experiences dizziness also has migraine as the root cause of the spinning head.
I have to counter one point here. If Lyme rarely caused dizziness or vertigo then I doubt a leading Lyme specialist with over 20 years experience, who has trained in the US would list ‘vertigo, imbalance, dizziness and lightheadedness’ as diagnostic criteria on a symptom grid. I can’t imagine it’s not based on extensive research and experience with a diversity of patients over the years.
Hi DL,
I’m posting a paper tonight published this month in The American Journal of Medicine titled "Common Misconceptions About Lyme Disease:. It’s a good read.
S
Lizzie has been bitten by a tick, has the symptoms of Lyme and has had blood tests that strongly prove she has Lyme. Treating Lyme is a no brainer
Lizzie, Didn’t you say you took antibiotics before and you felt slightly better? Surely that is a good sign 
It sounds like nobody truly understand Lyme or Migraines
Scott - I don’t really get your argument regarding Lyme. Are you saying it doesn’t exist? Or are you saying it’s the migraine causing the dizziness with someone who has Lyme? If that’s the case do you believe Lyme is causing the migraine or are they just unlucky and have Lyme and migraines and there is no link
Just putting my oar in … having worked as a veterinary nurse for 10 years in find it very hard to believe that anyone could get bitten by a tick (or have one hang on for any length of time, i thought to get Lyme they had to remain attached for a period?) and not feel it or be aware of it!!
I’m sorry, i must have missed the part that says if Dizzylizzie was aware or not that she had gotten bitten but as far as i know most ticks are quite large and i am sure you would feel the initial bite!
Dee- you are wrong. You do not necessarily notice a tick bite. That is plastered all over the research.
Scott- I understand you’re mindful that everyone with a migraine diagnosis here doesn’t get whipped up into a frenzy and run off now convinced they actually have Lyme. As we’ve said before, it’s important to remain logical and calm.
However,as Rob points out, in Lizzie’s case, it’s a no brainer- she was bitten by a tick, as her doc points out, she has a strong history of being in tick evident places ie region of the US, scientific agricultural background, etc, she has arguably slightly different symptoms than some of us here such as pulling in the face and tremors (though I recognise some of us do have these too) and she has positive blood tests for lyme- as Rob says, treating lyme is a no brainer.
But there still seems to be a great animosity from you regarding Lyme.
She’s talked about it logically and yet you’re saying Lyme is a rare cause of dizziness. It’s not.
What do you expect Lizzie to do? Because its coming across that you expect her to say "Ok, I’ll ignore the diagnosis, I will not take the antibiotics, I’ll keep trying the migraine meds and hope they do something’…
Forgive and correct me if I’m wrong, but I would like to understand your view on Lyme so perhaps if you could just explain it in a very very basic straight forward couple of bullet pointed, very plain English way.
The only question I have regarding it is, does Lyme CAUSE migraine, or does migraine and Lyme coexist? As Rob asks. But that’s not a question to you, it’s a question for the doctors who probably don’t know. The only thing to do is to treat Lizzie and see what happens… If Antiobiotics clear a lot of symptoms but not dizziness, maybe that would indicate the answer and then you treat the remaining dizziness with a migraine preventative and at the end of it, you have a fully functioning non Dizzie Lizzie.
Lizzie- sorry your thread has been hijacked to discuss Lyme AGAIN. It should be full of well wishes. xx
— Begin quote from “robertgreen99”
Scott - I don’t really get your argument regarding Lyme. Are you saying it doesn’t exist? Or are you saying it’s the migraine causing the dizziness with someone who has Lyme? If that’s the case do you believe Lyme is causing the migraine or are they just unlucky and have Lyme and migraines and there is no link
— End quote
Nope, never said it doesn’t exist. It absolutely does exist but I don’t believe there is “chronic lyme disease”. I’m trying to inject some rationality into this because it has caused some major angst for a few people.
My personal opinion after reading some lit and having some discussion with a neurologist is that it is very rare for Lyme to cause dizziness all by itself and my inclination would be that such a person with Lyme and dizziness probably has migraine too (as in Lyme could trigger migraine). That’s my opinion. Others may think otherwise.
Apologies - i just looked it up and it seems they can bite without you feeling it - if one hang on though perhaps you would notice it in some cases? Anyway yes i was wrong there.
— Begin quote from “scott”
— Begin quote from “robertgreen99”
Scott - I don’t really get your argument regarding Lyme. Are you saying it doesn’t exist? Or are you saying it’s the migraine causing the dizziness with someone who has Lyme? If that’s the case do you believe Lyme is causing the migraine or are they just unlucky and have Lyme and migraines and there is no link
— End quote
Nope, never said it doesn’t exist. It absolutely does exist but I don’t believe there is “chronic lyme disease”. I’m trying to inject some rationality into this because it has caused some major angst for a few people.
My personal opinion after reading some lit and having some discussion with a neurologist is that it is very rare for Lyme to cause dizziness all by itself and my inclination would be that such a person with Lyme and dizziness probably has migraine too (as in Lyme could trigger migraine). That’s my opinion. Others may think otherwise.
— End quote
There is an argument as to whether ‘chronic lyme’ exists or not. But if you say it does not exist, you cannot argue that there are obviously residual symptoms left over from what was untreated lyme in the past. Who cares if you call it chronic lyme, or something else. Whatever you choose to call it, this person is now sick. And needs to get better.
Dr Owen specializes in Lyme and see’s patients all the time surely he knows if Chronic Lyme exists and that it can cause dizziness
This Neurologist might be great but he doesn’t specialize in Lyme
I just find it hard to believe that Lyme is causing a migraine that makes you constantly dizzy without a headache!!
being dizzy 24/7 because of a migraine without a headache is quite rare IMO
Anyway we could be here all day discussing this one. We are all going Lyme mad!!
Read the misconceptions paper. Hopefully that will cure the Lyme madness. 
— Begin quote from “robertgreen99”
I just find it hard to believe that Lyme is causing a migraine that makes you constantly dizzy without a headache!!
being dizzy 24/7 because of a migraine without a headache is quite rare IMO
Anyway we could be here all day discussing this one. We are all going Lyme mad!!
— End quote
But Rob, Lyme can cause migraine, “Borrelia burgdorferi (agent in Lyme disease) can cause chronic inflammation in the nervous system that can trigger migraine headaches”
And we know that you can have migraine without headache- I’m not certain that is actually that rare… Don’t forget, headache is 1 symptom of 100s of migraine symptom so it is plausible.
So I do think it’s possible that Lyme could CAUSE migraine. But that doesn’t in turn mean you don’t have Lyme.
You’d hope that by treating the lyme, you’re treating the migraine too.
LYME. MIGRAINE. WHATEVER. I just hope everyone gets better.
I am so frigging tired, I can’t keep my eyes open and I’m downing lucozade by the gallon and it’s having no effect.
— Begin quote from “scott”
Read the misconceptions paper. Hopefully that will cure the Lyme madness.
— End quote
Where is it?
I just made it a sticky. You can’t miss it. S
— Begin quote from “missmoss83”
. Who cares if you call it chronic lyme, or something else. Whatever you choose to call it, this person is now sick. And needs to get better.
— End quote
It matters, fundamentally. There’s no point treating migraine with anti biotics just like there’s no point taking a tricyclic for Lyme.