I’m tired and confused!! i don’t even know what day of the week it is let alone understanding Lyme or Migraines!!
I don’t think anyone really understand either of them!!
Good Night. I am having a kip at my desk!! 
— Begin quote from “Victoria”
— 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.
— End quote
I know it matters- in my opinion, chronic lyme exists.
I said ‘who cares’ as in, that person was once bitten by a tick and not treated at the time. They are now left with a set of symptoms and are ill from them. You can call it chronic lyme as I believe you should. My “who cares what you call it” was directed to those, i.e Scott, who beleive it doesn’t exist- what do you suggest you call the set of symptoms these people now inhibit???
I know what the argument against ‘chronic lyme’ is.
You say that that scenario is similar to the meningitis patient who suffers seizures since he had meningitis. You don’t say he has ‘chronic meningitis’. You say he has a seizure disorder.
But what would you refer to it in lyme? There is a constellation of symptoms. So chronic lyme fits much better and is indeed indicative of what the problem is.
— Begin quote from ____
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.
— End quote
I want to address this one–without arguing whether Lyme is real or not yadda yadda yadda…
Migraine is a mechanism that lives inside every human being. It is a reaction that appears to occur when a chemical cascade begins in the brain that affects the sensory receptors in the–shall we call us victims? Every human on earth can experience a migraine reaction. The difference between humans is how high our “trigger” threshold is, and what sets it off. Some people may never actually experience a migraine reaction because they will never experience the combination of triggers that would set off the cascade effect in their brain. Others, like us, who have lower thresholds, can experience cascades for a myriad of reasons.
Some of us may have been born with a low threshold–others can acquire a low threshold by experiencing a trauma (head injury–infection–illness–unkown trauma etc).
LYME DISEASE can be the infectious trigger that initiates chronic migraine. (So can meningitis, a bad spinal tap, spinal block, horrible head injury, mild concussion, really bad flu, high fever, you name it).
Here is the part that everyone needs to recognize and be very cognizant of–and a point that not many Lyme Literate MDs recognize or are themselves aware of so you NEED to be prepared to bring it up yourself–just as you had to be informed all along. EVEN IF YOU FIND THAT YOU HAVE LYME DISEASE–this does NOT mean that treating the Lyme will cure your migraine symptoms—and continuing Lyme treatment with antibiotics for months and years if the only symptom left is migraine is likely NOT the best course of action.
Think of it this way (and PLEASE recognize that I am NOT dissing a Lyme diagnosis) if Lyme triggers migraine and lowers your threshold–then you can TOTALLY get rid of the Lyme bacteria but still be left with the debilitating migraine symptoms. And if you never treat the migraine–you will continue to have the symptoms.
Don’t misunderstand me–late stage, untreated Lyme does exist, and needs treatment. If your tests are positive, then go right ahead and get treatment. But recognize in the Brulosconi (sp?) symptomology chart that if the ONLY symptoms you have are neurological–consider the fact that you may have a co-morbid diagnosis of MIGRAINE–and that continued treatment with antibiotics cannot cure, or releive those symptoms!! Treat BOTH–as far as I know there is no dangerous drug interaction between topomax (or triptans) and antibiotics.
And if a Lyme Doctor won’t even consider migraine as part of the spectrum–then he/she hasn’t done his/her homework–research has PROVEN that Lyme disease can increase Migraine activity in patients!!! Especially optic and atypical migraine during acute phases of infection and when there is neurological involvement–I can find the research report on that if you prefer–I’ve read it–it was one of the NIH one’s even!!
D
According to the IHS chronic vestibular migraine does not exist…
I really don’t see the point in turning these Lyme diagnosis threads into a debate. If there needs to be a debate, then open up a “Lyme Debate” thread and all rants and raves can be placed in there.
If a qualified health professional has diagnosed someone with Lyme due to conclusive tests then let them crack on with getting the help they need and give them support. This constant battling within their threads is not helping anyone…
Dolf;
Makes complete sense. Treating lyme may not rid you of your migraine, if lyme was your migraine trigger.
But considering Lyme produces many of the same symptoms as migraine, it wouldn’t be unreasonable or ridiculous to hope that your migraine was a misdiagnosis and that your symptoms are caused exclusively by lyme, not migraine.
Yes, you could have both coexisting, but it’s not unreasonable to suggest it could only be Lyme.
Look at the symptom check list they run through;
lymenet.org/BurrGuide200810.pdf
CHECK LIST OF CURRENT SYMPTOMS: This is not meant to be used as a diagnostic scheme, but is
provided to streamline the office interview. Note the format- complaints referable to specific organ systems and
specific co-infections are clustered to clarify diagnoses and to better display multisystem involvement.
Have you had any of the following in relation to this illness? (CIRCLE “NO” OR “YES”)
Tick bite N Y “EM” rash (discrete circle) N Y
Spotted rash over large area N Y Linear, red streaks N Y
CURRENT SEVERITY CURRENT FREQUENCY
SYMPTOM OR SIGN NONE MILD MODERATE SEVERE NA NEVER OCCASIONAL OFTEN CONSTANT
Persistent swollen glands
Sore throat
Fevers
Sore soles, esp. in the AM
Joint pain
Fingers, toes
Ankles, wrists
Knees, elbows
Hips, shoulders
Joint swelling
Fingers, toes
Ankles, wrists
Knees, elbows
Hips, shoulders
Unexplained back pain
Stiffness of the joints or back
Muscle pain or cramps
Obvious muscle weakness
Twitching of the face or other
muscles
Confusion, difficulty thinking
Difficulty with concentration,
reading, problem absorbing
new information
Word search, name block
Forgetfulness, poor short
term memory, poor attention
Disorientation: getting lost,
going to wrong places
Speech errors- wrong word,
misspeaking
Mood swings, irritability,
depression
Anxiety, panic attacks
Psychosis (hallucinations,
delusions, paranoia, bipolar)
Tremor
Seizures
Headache
Light sensitivity
Sound sensitivity
Vision: double, blurry, floaters
Ear pain
Hearing: buzzing, ringing,
decreased hearing
Increased motion sickness,
vertigo, spinning
Off balance, “tippy” feeling
Lightheadedness, wooziness,
unavoidable need to sit or lie
Tingling, numbness, burning
or stabbing sensations,
shooting pains, skin
hypersensitivity
Facial paralysis-Bell’s Palsy
Dental pain
Neck creaks and cracks,
stiffness, neck pain
Fatigue, tired, poor stamina
Insomnia, fractionated sleep,
early awakening
Excessive night time sleep
Napping during the day
Unexplained weight gain
Unexplained weight loss
Unexplained hair loss
Pain in genital area
Unexplained menstrual
irregularity
Unexplained milk production;
breast pain
Irritable bladder or bladder
dysfunction
Erectile dysfunction
Loss of libido
Queasy stomach or nausea
Heartburn, stomach pain
Constipation
Diarrhea
Low abdominal pain, cramps
Heart murmur or valve
prolapse?
Heart palpitations or skips
“Heart block” on EKG
Chest wall pain or ribs sore
Head congestion
Breathlessness, “air hunger”,
unexplained chronic cough
Night sweats
Exaggerated symptoms or
worse hangover from alcohol
Symptom flares every 4 wks.
— Begin quote from “RichyF”
According to the IHS chronic vestibular migraine does not exist…
I really don’t see the point in turning these Lyme diagnosis threads into a debate. If there needs to be a debate, then open up a “Lyme Debate” thread and all rants and raves can be placed in there.
If a qualified health professional has diagnosed someone with Lyme due to conclusive tests then let them crack on with getting the help they need and give them support. This constant battling within their threads is not helping anyone…
— End quote
Good point!!! I’m saying no more. Well, for now anyway. I need to do some bloody work.
LOl thanks all, I agree with Richy, MM and Rob to be honest, I don’t think any of us can determine with absolute certainty whether chronic Lyme or chronic migraine exists and the physiological mechanisms that underly them, I believe they both do due to a mutitude of reasearch and the professional opinions I have received. All i know is that I have a massive constellation of chronic neurological symptoms, ancd I finally feel I have reached a proper, sensible, evidenced diagnosis and the last thing I want is to have that thrown into question…so I will follow what i think is right and let everyone else make their own minds up. xx
I agree Lizzie. You have to do what feels right for you and given the test results you have had it would be foolhardy not to at least attempt to treat the Lyme before you consider proceeding with trialling migraine meds. Loads of people, myself included in the past, have taken long courses of antibiotics for acne without any particular problem so I don’t think you should worry too much about that. (I know there is an argument for people not taking antibiotics if they don’t need them as it could affect their long-term efficacy but I am referring to the risks in relation to an individual). Anyway I wish you luck Lizzie and know you will keep us posted with your progress! We are all learning here and lots of things are still uncertain and unknown xxx
Lizzie - I couldn’t agree more!
I am much too sick to debate, but I worry if I don’t post things about Lyme every so often it will be pushed to the back, and newcomers will not see the info. I wish it wasn’t true, but it is indeed prevalent worldwide (and ticks can be present in urban/suburban parks/gardens, etc., so even if someone thinks they weren’t in an endemic region, that doesn’t rule out potential exposure). It hurts me to think of others suffering as I did, and not at least ruling out this plausible cause of multi-systemic symptoms. I never want to scare others, but I think the scariest thing in the world is living like this and not getting well,and continuing to decompensate. What has been very interesting to me is that so many of us don’t just have dizziness, but so many other neurological symptoms as well as overwhelming fatigue. I hadn’t realized that in the past. This definitely opened my eyes.
i am far from elated about taking long-term antibiotics. But, sadly, that is my only option if I want to live again. the choice is easy.
Lastly, I never said that migraine doesn’t exist or migraine symptoms do not exist. What I am talking about is what caused my 1x per year headache to manifest into chronic debilitating dizziness (rocking), as well as numerous neurological symptoms, bone-crushing fatigue, etc. So, yes, this is a migraine forum, and what better place to figure out causes of debilitating neurological symptoms (including migraines and dizziness). The goal of any forum is for people to get well.
Wishing Lizzie and everyone all my very best!
Thanks Scott, the paper you posted is interesting. It doesn’t make any denial of chronic Lyme disease though, in fact it actively acknowledges late stage manifestations of the disease. It’s no surprise, given the extensive funding of the authors by diagnostic labs, that it focuses heavily on the necessity for serological tests to back a diagnosis. I am also entirely unsurprised that given the heavy funding of the authors by the CDC that they underplay the severity of Lyme.
They talk a lot about the ‘development of reliable serologic testing’ – and advocate ‘higher-sensitivity enzyme-linked immunosorbent assays (ELISA) followed by standardized Western blots’ which is what I was tested by so this, if anything, firms up my trust in my IGG and IGM sero-positivity.
They say, to quote, ‘the difficulty with syndromic definitions is that they typically lack biologic precision’ so from this it would suggest they don’t advocate deeming a set of symptoms common nor rare to Lyme, so dizziness cannot be deemed a rare manifestation of the condition if this recommendation is to be followed.
Likewise, they state ‘No clinical features, except erythema migrans or possibly bilateral facial nerve palsy—in the appropriate context—provide sufficient specificity or positive predictive value’ – so this would suggest that no specific set of symptoms can define the disease…so neurologists dismissing lyme dizziness is surprising if this is to be taken as a reliable recommendation.
They make multiple unsubstantiated comments, one that particularly stood out…’many patients with early Lyme disease are seronegative. However, the vast majority of such patients have a characteristic skin lesion called erythema migrans, the consequence of early cutaneous B. burgdorferi infection at the site of the tick bite’ – they give no evidence to back this claim of ‘vast majority’ nor any indication of what ‘vast majority’ actually means….is this anecdotal, who knows!!
They also state that ‘Although patients with very early Lyme disease may be seronegative, seronegativity occurs rarely—if ever—in individuals with later manifestations or chronic symptoms of B. burgdorferi infection’ – so they acknowledge that chronic disease does exist!!!
The authors assumptions that improvement on antibiotics is due to other bacterial infections, a placebo effect or concurrent neuro-modulating effects of antibiotics seems to be almost entirely conjecture in my opinion (clutching at straws??)…the placebo trial they quote is one I’ve read before, it has a tiny sample size…
I completely respect your concern about long term antibiotic usage and Lyme hysteria Scott, I agree with you. That is why I was so wary of embarking on it until I was 100% sure. I also respect that you don’t believe chronic Lyme disease exists…I just don’t agree. I agree that migraine is probably the cause of almost all the dizziness of people here on the forum. I don’t think chronic, persistent 24/7 dizziness due to migraine is common though. I am no doctor and it is my opinion entirely, but I think that there is a danger of dumping patients with neurological symptoms but no specific neurological pathological findings i.e. MRI lesions or focal neurological dysfunction etc into the migraine category as it’s a diagnosis of exclusion….
Big relief Lyme is not considered fatal tho hey!!
Maybe if I improve it will highlight that I was right about my specific case…I hope so.
Thnaks Jem and Lisa. xx
You’re welcome, Lizzie.
I’m very familiar with the article posted and Dr Wormser’s confounding studies, such that his disease definition is narrow to say the least and patients are followed for limited amounts of time. It is crucial to study the methodology of his studies. I think this quote says it all. Those ill with chronic Lyme symptoms are described by Wormser as experiencing “the aches and pains of daily living.”
In the interest of people getting well, it is bothersome that this is referred to as “lyme madness” and the Wormser article was strategically placed on the top of the forum where newcomers “can’t miss it.” But, of course, this isn’t my forum so it sadly is what it is. But, I hope that others will have the good sense to research Lyme on their own, and draw their own conclusions, as several have, thank goodness.
Dolf – great post by the way. Bang on as far as I’m concerned.
MissMom – I think you just listed every symptom known to man/ woman!
— Begin quote from “RichyF”
According to the IHS chronic vestibular migraine does not exist.
— End quote
Not true.
— Begin quote from ____
A chronic variant of vestibular migraine has been reported. A distinction between chronic vestibular migraine and comorbid psychiatric dizziness syndromes seems particularly challenging in these patients. In the future, following additional research, chronic vestibular migraine may become a formally recognized category of a revised classification.
— End quote
What this means is that the Committee for Classification and the Migraine Classification Subcommittee of the IHS don’t yet have enough evidence yet from clinical trials or observational studies to make guideline recommendations even though they acknowledge it has been reported. When more evidence is available (as we had been waiting to allow the now included recommendations for VM) they will appear, no doubt. Conversely, “chronic Lyme disease” is a term which is used by a small number of practitioners (often self-designated as “Lyme-literate physicians”) to describe patients whom they believe have persistent* B. burgdorferi* infection, a condition they suggest requires long-term antibiotic treatment and may even be incurable. Although their definition of chronic Lyme disease clearly encompasses post–Lyme disease syndrome, it also includes a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to* B. burgdorferi* infection.
This from the New England Journal of Medicine (NEJM, Volume 357(14):1422-1430. October 4, 2007):
— Begin quote from ____
Chronic Lyme disease is the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections. Other examples that have now lost credibility are “chronic candida syndrome” and “chronic Epstein–Barr virus infection.” The assumption that chronic, subjective symptoms are caused by persistent infection with* B. burgdorferi* is not supported by carefully conducted laboratory studies or by controlled treatment trials. Chronic Lyme disease, which is equated with chronic B. burgdorferi infection, is a misnomer, and the use of prolonged, dangerous, and expensive antibiotic treatments for it is not warranted.
— End quote
S
Ok I give up. You are right, chronic lyme doesn’t exist, I’m never going to get better, my antibiotic treatment will be a dangerous waste of time and there is no hope (as years of migraine meds and lifestyle changes have done nothing). I am saddened that an honest and balanced description of my appointment, intended to inform others has ended with this relentless need to discredit what I was finally feeling was an answer to years of suffering. I don’t really understand the motivation.
This discussion is not getting anywhere and is not helping anyone.
We can all post articles and links to back up our side of the arguement
I think it might be a good idea if the lyme stuff is put to bed
:mrgreen:
Robert – it is certainly not my intention to “back up my side of some argument”. The intention is to get at the truth or as close to it as possible.
That’s what we do here. To do that we look at the best evidence we can which requires accessing the science literature or listening to expert opinion.
DL – I don’t think anything here discredits what you’re doing (or Lisa). You have a test result that shows Lyme disease. Your physician is going to trial a few months of ABs and reassess. As written in AJM, “Scientific evidence has advanced sufficiently over the past 2 decades. Diagnosis and treatment of this infection are now generally quite straightforward. Legitimate biologic questions remain to be studied, with answers that may well be relevant in the study of other disorders. However, the existence of these remaining biological questions does not negate the fact that the approach to diagnosis and treatment is now well defined.”
My guess is that if nothing changes he’ll conclude that Lyme disease is not the problem. He never said he was putting you on long term antibiotic use from what you’ve posted. If you have a bacterial infection it will rid you of it and hopefully mean that any migraine activity you may have will go with it. I thought what he proposed for you sounded totally sensible.
This person was treated in the same manner you’re embarking on and seems it worked for her. Just concentrate on that and forget about the extreme Lyme stuff out there.
http://mvertigo.cloudapp.net/t/i-was-diagnosed-with-lyme-disease/3639&p=32605&hilit=lyme#p32605
If you want to read any more about the categories of chronic lyme disease see the new article in the sticky from NEJM. If you’ve had enough just leave it.
S
Ok thanks Scott, fair enough, sorry for getting uptight, it’s just hard when i feel like I need to trust in this diagnosis and go with it. I’m not saying I want to hid from the truth but there are 2 sides of the great Lyme debate and the truth isn’t clear, IMO, as yet. x
No worries DL. Maybe stop reading about this for a while if it’s doing your head in and just see how it all goes on the ABs for a few months then reassess the situation if you’re not happy with the outcome.
Looks like we both posted at the exact same time!