my head is spinning from these posts. The last thing I want to do is debate. Please just know I am coming from a good place when I bring up the possibility of Lyme for others. I do know that it is indeed an epidemic (sadly) and testing is extremely inaccurate. All the information is out there to read and make your own decisions. I respect others who might not believe that this is the case. I am not going to engage in debates. I will periodically check in, of course, and if anyone wants to find out more about Lyme, please PM me. I truly want to help.
— End quote
Lisa,
I couldn’t agree with you more. It is such a shame that this thread has been hijacked by a troll. Scare mongering, conspiracy theorizing and alarmist paranoia have no place in what should remain a thoughtful and reasonable discussion about Lyme and its possible role in activation of migraine or as an illness which may mimic migraine.
Your sincerity has never been in doubt and your input and perspective always welcome. You have suffered more than most and we are all cheering you on and wishing you every success. I hope you continue to keep us updated on your progress.
Scott - like I said I am not going to engage in debating back and forth. But would be remiss not to share this info. This speaks specifically about Australia and if ever wish to find out further info specifically to Australia (and for others residing in australia) I’m sure contacting this society would provide far better info than I ever could.
Thanks Lisa. What Vic wrote goes for me as well. It’s a shame cranks and kooks sometimes show up with their nonsense and derail things. Please be careful if you head down the road of long term antibiotic use. While I’m not convinced there is a neurological long term form of this disease, I sincerely hope the treatment does the trick for you. You’ve been in the wars with this junk for too long.
Hi Scott,
Can you please explain why you don’t believe there is a long term neurological connection to lyme. My doc who originally tested me for lyme said the same thing (I think) but I was so dizzy at the appointment I could not understand his explanation at all. I do know he will not test me anymore and told me I do not have lyme. He got very technical and beyond my level of comprehension also to be honest. Can you break it down for me? I really want to understand both sides so I can make an informed decision. When I read on the internet there does seem to be two very strong sides to this debate, many with very STRONG opinions, that seem cult like so to speak. Thanks!
I don’t know for certain that there is no such thing as chronic Lyme disease; I am very skeptical is all. There are a lot of cranks out there promoting nonsense about this (see Nazi stories for example). The Infectious Diseases Society of America, the Centers for Disease Control, the National Institute of Allergy and Infectious Diseases (run by the National Institutes of Health), and the American Academy of Neurology all agree that there is no such condition as “Chronic Lyme disease”. In other words, there is no convincing evidence and so they don’t endorse it. Others disagree and that’s cool.
Scott/rockergrl- Definitely worthwhile to read this. lymeinfo.net/hearings.html. It’s 300+ pgs long (top transcripts) but worth the read if you’re questioning chronic Lyme. If can’t read all, read through first three sections.
Bloody hell, I absolutely cannot physically read all these posts.
But I can say that I am really concerned that there is so much bloody mumbo jumbo about Lyme all over the internet, and I don’t understand any of it.
What I do understand though is that and what I think I conclude is…
a) Some doctors don’t believe that Chronic Lyme Disease exists. Which is to say, “That does not mean you are not suffering, you are. Just as someone who survived meningitis suffers from a seizure disorder due to the meningitis. I would not consider him to have chronic meningitis and continue to treat him with antibiotics. He needs anti-seizure medications.” …So instead of having chronic lyme, you are left with under lying other health conditions, perhaps such as vestibular migraine…? So we now treat migraine.
That is my stab in the dark at a possible theory on chronic Lyme if indeed it ‘doesn’t exist’ as so many say.
b) If you treat with a shit load of antibiotics, you might end up killing off good bacteria and screwing yourself up more…
In short, how is anyone who is diagnosed with Lyme, supposed to know what the hell to do for the best and who to trust?
MM - I couldn’t agree more. It is soooooo confusing
I posted this yesterday. lymeinfo.net/hearings.html
If you can’t read it all - it is 300+ pgs. I would suggest trying read the second transcript pg 27-62 and see if it helps to clarify things at all. It did for me as helped me understand reasons why there is denial of chronic Lyme without having to read through conspiracy theories, etc. I found it helpful. Hope it doesn’t make your head spin even more
Scott and Lisa… thank you so very much for all the info. I suppose we also get our beliefs about lyme based on the doctors we interact with. Unfortunately (or fortunately) none of my docs believe in chronic lyme being the cause of my vestibular migraine symptoms. I bet if I saw a LLMD they would disagree with my docs… And MM, I think you said it best. So confusing… who do you believe? I like the idea of a post lyme disease syndrome. I think that makes the most sense to me. And the downside of long term antibiotics is definitely something to also consider.
Lisa and those who have doctors that believe in chronic lyme… please get well! And come back and tell us you are cured. I will pray that happens to you. It really would be great to have another treatment other than these damn migraine meds. And another explanation. This illness is so frustratingly difficult. These symptoms are so hard to define for so many of us.
Great discussion. I have learned so very much… yet still feel so unsure. I guess it also depends on our personality and level of risk taking to pursue such a treatment? Good luck!!!
Again, from the veterinary side there a few things that really concern me about the human medical field’s approach to lyme. We routinely screen dogs for tick borne disease. 25-30% test positive for antibodies to at least one disease (we see mostly lyme and anaplasma and rarely erhlichia in this area). Of those 25-30%, roughly 10% develop symptoms. That’s means that 2-3 % of the population! Its known that dogs with coinfections are more likely to get sick and be more sick.
We do not treat every do with antibodies, only those that get sick and those with coinfections. Dog’s almost always develop polyarthritis, high fever etc. with lyme. They do not appear to get a neurological form but can get a fatal kidney disease where antibody complexes form in the kidneys. This is not responsive to abx and is not found in humans. Interestingly enough cats seem immune to lyme.
When we do treat lyme, the dose is 4x the dose used in humans! I saw a dog who was treated by another clinic at a lower dose and what do you know, his symptoms persisted.
There is question about chronic lyme in the veterinary world too. Some dogs present over and over with symptoms. They typically respond to antibiotics so reinfection is also quite possible.
My last concern is that we have numerous safe vaccines on the market. There are non currently available for humans. Also, snap tests are available that can be used in clinic. So obviously the veterinary profession recognizes the prevelance and importance of tick borne disease. We learn about these diseases as well as parasitic diseases that appear to be minimally covered in medical school.
I guess it concerns me that more research isn’t being done and the whole thing isn’t taken more seriously.
When you say you don’t believe in chronic lymes the same can be said for chronic mav. I brought up mav to my neurologist and he said no, that only occurs in episodes and dismissed me. He wrote in my chart that he suspected chronic daily migraine but offered no treatment and told me to go see a counsellor for stress. I asked my regular doctor about trying a preventative. And what do you know within days I started feeling better and within weeks I am able to drive and work part time. Was completly homebound before. So the proof is in the pudding. If people with chronic lyme symptoms respond to longterm antibiotics then who am I to argue that. People should stop being so proud. There is so much we don’t know and when the human medical field tries to pretend they know everything, they miss the mark whether it be mav, lyme or otherwise.
Good ponts you raise but from my point of view you are drawing on a false analogy here assuming that because dogs suffer with Lyme disease to the extent you describe that therefore the human medical field is failing we humans for apparently not going after Lyme disease with the same vigour as vets have in dogs. There are likely a whole host of reasons why it may be worse in dogs – the most obvious being that they’re covered in fur and spend a lot of time sniffing around the ground which is obviously very good for ticks. Only this week a study came up cautioning the use of the mouse model in extrapolating disease to humans. Indeed, billions of dollars may have been wasted. This article discusses this:
When you say you don’t believe in chronic lymes the same can be said for chronic mav
— End quote
Again, a false analogy in my view where the differences outweigh the similarities. We could pick any disease with this logic and, based on case reports alone for that disease, say that we know there is a chronic migraine state (even though my doctor didn’t acknowledge it), and therefore there could be a chronic state for disease X which we should take seriously and treat it with a controversial therapy (long term antibiotic use for example). Migraine and Lyme are not in the same ballpark. Nobody in the broad medical community would dispute there is such a thing as chronic migraine. This is well-supported in the science literature. What was missing for vestibular migraine was diagnostic criteria. More evidence is still needed before they can include chronic VM in those criteria, but there is evidence and they acknowledged it. Conversely, according to a number of medical review bodies there is no evidence to support chronic Lyme disease.
Hi Scott,
My boyfriend is a researcher and works with mice and he is always telling me that very few experiements can ever be extrapolated to humans so I agree that it might be a jump to compare lyme disease in dogs with humans. In fact, I am not sure we are all that related to dogs physiologically. With regards to chronic migraine, especially when it relates to rocking, didn’t Dr. Cha say that this was Mal de Debarquement? Many of my docs also said there is not chronic migraine, although some say there is. And the strict definition does say it is episodic doesn’t it? Thanks
LeAnne – thank you for that information. Such a clear explanation. IMO, The handling of chronic Lyme in humans is the most disgraceful of episodes in the history of medicine.
I had posted this link in an earlier post. lymeinfo.net/hearings.html They are the transcripts from two different NY Lyme disease state hearings on Chronic Lyme Disease and Long-Term Antibiotic Treatment. This is over 300 pages which is quite hard to read when we are feeling so ill. But, it can be informative to even read the first few testimonies for anyone questioning the existence of chronic Lyme.
I have yet to see double-blind, placebo-controlled studies on chronic vestibular migraine, yet thankfully this forum has recognized the existence of chronic VM symptoms.
What’s important isn’t whose right or wrong, but for us ALL to get well. No one deserves to live in misery. and, I am thankful for the doctors (heroes) who are treating chronic Lyme and saving lives each and everyday.
I think it is very important to get this right because of the treatments involved and the potential to waste a great deal of time and money. As we know long-term AB use is not something someone should sneeze at unless it’s absolutely necessary (I get that you’ve been down every avenue and so are preparing to do so and it makes sense. There is reasonable doubt given your history, where you live and the test result). There are major risks for resistant bugs developing in the person being treated long term and in the broader community where AB use is not warranted (RTIs for example). And then there’s other dx’s that pop up such as CSF leak which involves an invasive procedure – and with that comes considerable risk. And so for me, at least, I would want to know what the odds are of actually having disease X (prevalence and incidence) and that what I’m doing is supported by evidence. Those are my principles that I’ve always stood by. So far it’s served me well and made me well again. The one time I dropped the ball, it cost me $2.5K. :?
— Begin quote from ____
Many of my docs also said there is not chronic migraine, although some say there is
— End quote
Any physician who tells you there is no such thing as chronic migraine doesn’t know what they’re talking about. There’s systematic reviews on this stuff about the global prevalence for a start.
[size=130]Global prevalence of chronic migraine: a systematic review[/size]
I wasn’t trying to imply that dogs and humans are the same. Obviously not. In fact l I think lyme in dogs is a lot easier to recognize and treat because it almost always presents the same, polyarthritis. It’s a lot more straight forward. I was trying to point out the high prevelence of exposure. The general population of humans is not screened for antibodies so it’s hard to know exposure rates but I would suspect they are underestimated. Most people don’t notice tick bites because deer ticks can be the size of a pinhead.
From what I understand there is no argument that when untreated lyme in humans can progress to neurological disease and other syndromes. The debate is how to diagnose lyme and whether a short course of low dose antibiotics is effective or if longer, stronger doses are needed.
There also doesn’t seem to be any argument about chronic migraine, it’s chronic mav that appears to be controversial. Most doctors aren’t even aware of mav in general. And my neurologist was under the impression that it only occurs in episodes. I know how frustrated it made me feel when my doctor offered me no help and said that my condition didn’t exist when clearly I am now responding to meds. I would imagine someone with lyme who does not respond to traditional treatment and is left disabled would feel pretty discouraged as well. And if they were treated with long term antibiotics and recovered I can see how they might be fanatical about telling their story and making others aware. And I would think they would have to be in a really horrible place to be willing to try risky and controversial therapy in the first place.
I don’t understand why everyone is so anti-lyme when people with mav are faced with similar challenges in being properly diagnosed and treated. We are all just trying to get better. The medical field is constantly evolving. We would be appalled at how many conditions were treated 100 years ago. Who knows what we will be saying about lyme disease and treatment 100 years from now
Wow!!! Hi everyone, I haven’t been on here in ages. I have been in touch with Lisa so I am aware of her recent diagnosis but I have to comment here somewhat on her behalf, I think she will be okay with that As she said in her initial post she would not be pursuing Lyme treatment if she was not so chronically ill. She may be one of the .00001% that has chronic Lyme. I do believe that Lyme is much, much more prevalent than anyone realizes but it just does not affect some as much as others. With that said, IF MAV treatments have failed and you have been sick for a very long time then perhaps it is time to look into Lyme.
BTW, I am doing well. I am so sorry I don’t post much anymore. I have been on topamax since August and while I am only on 25mg’s, topa and Zoloft have really helped me. I am not 100%. But I am functional, and I am happy for the most part. I have some bad days where the vertigo can be very bothersome but I am not bedridden. There are a lot of things I can’t do anymore, for example, I will NEVER go out on a boat again but there are so many things I can do again. I am thankful to the Lord that I have my life back. I do however, always feel that there is motion in my right ear, it never seems quite right. It often seems that there is air trapped in there. It’s very odd. I wonder if it will ever go away as it has been almost two years now.
Anyhow. there is hope. I could have never gotten through those terrible, scary, dark days I had last winter without the support of so many of you’ll and I wish you’ll so much health and happiness!
And BTW, I know that so many people give Scott so much grief over his (sometimes) very strong opinions. However, he has put soooo much of his personal time and energy into helping others with this terrible condition. He really does care so much.
Please pray for Lisa, I am so thankful that she has found the true root to her symptoms and so hopeful for her recovery. God knows she deserves it. xoxoxo
Elisha, Lovely to hear you are doing as well as poss. Never know when we don’t hear for a while whether that is good or bad news! Also thankful Lisa has finally got a diagnosis after her determination to not ‘give up’ on her search for an answer to the dreadful debilitating illness she is living with and we are all praying that the treatment will give her her life back.
Yup, we appreciate Scott keeping us ‘on the straight & narrow’ - he spends a lot of time explaining things! Makes this forum such an interesting place to visit.
Barb
Hi Leanne – let me be VERY CLEAR. Nobody here is anti-Lyme. This disease exists and it is not pretty for some people. However, the Infectious Diseases Society of America, the Centers for Disease Control, the National Institute of Allergy and Infectious Diseases (run by the National Institutes of Health), and the American Academy of Neurology, the European Federation of Neurological Societies, the European Union of Concerted Action on Lyme Borreliosis, the Canadian Public Health Network, and the German Society for Hygiene and Microbiology all agree that there is no such condition as “Chronic Lyme disease”. And so I think there is pretty good reason to take this aspect of it with a grain of salt.
The point is for people to keep their heads screwed on straight about it and not start worrying that there is an epidemic of Lyme-infected dizzy people walking the earth. There are bigger fish to fry for the large majority of people with a migraine history and dizziness/ vertigo.
Maybe anti- lyme is the wrong way to describe it. But I find it interesting that Lisa posts she is going to start lyme treatment and that if people aren’t getting better then they may want to consider lyme disease as a potential cause for their symptoms. And wow, it starts this huge 80 some post debate. People seem to have very strong feelings about this topic. I don’t know what the truth is, whether there is or isn’t “chronic lyme” but I am willing to keep an open mind about and know of several people in my own community who have been or have a family member who has been severely affected by the disease.
Ultimately I feel that when Lisa wrote her post her heart was in the right place. I know she hasn’t taken this lightly and has obviously done her own extensive research before going down this path. But apparently this topic opened up a big can of worms
And when I wrote my posts I was just sharing my own personal experience with the disease and that based on my experience I would suspect that the prevelance in humans is much higher than it is thought to be. And also that we use much higher doses in vet med which upon reading more about the disease in humans are similar doses to what the controversial ILADS recommends vs what the cdc recommends. I find this all very interesting and hope as we learn more about the disease there won’t be so much controversy and people with lyme will get appropriately treated (whatever that may be).
