Can you message me first? I can't start a private conversation with my iPad. I will give you a couple of Fl Dr names.
Yeah, and we'll be partying when Lyme is just some annoying infection people *used to* get, but don't anymore. Heh. ;) You go, mojo!
Thanks all, very much appreciated! And Mojogal, yes please I'd love to know the name of your doc, please share thank you!!
Holly Heck we've been on here a long time, lol
I am seeing a new Dr here in Fl if still is in need of a recommendation
PS I just did a search online (via google) for
--- florida lyme disease association --
and got some quite interesting hits. It's not just a list of organizations, but also some commentary about various groups and approaches etc. Might be helpful --
Sorry about your husband's ailments -- and good for you for 'working the problem' -- thinking through and looking for the various possibilities.
In addition to suggestions Mojogal may have, the doc who ran the PCR test at Univ. of North Florida might have some ideas. Docs who *really* understand Lyme are a fairly small bunch and are often quite aware of others who see the Lyme world the same way.
You are right that there are some oddball Lyme docs, partly because there is still so much unknown and being discovered as time goes on. It's a common aspect of any new field, so you're wise to keep your eyes open. Know also however that nonLLMDs who think Lyme is nothing to get concerned about are often vocal about their views and make it seem that there are no good Lyme docs nearby, when really the Lyme docs are just keeping a low profile.
The doc at UNF who ran the positive tests may have some recommendations. Can't hurt to ask that doc for suggestions/referrals. Word of mouth is often quite efficient, and joining (online or in person) local Lyme groups can be helpful too.
Best wishes to you and yours --
Hi there - my husband is currently going through the same hoops. Doctors here don't know much about Lyme so they keep leaning toward an MS diagnosis (even though they call it "Demyelinating Disease" right now). Hes got "lesions" on the brain that have come and gone in the past two years. To a lot of drs who are ignorant in dealing with Lyme, this is enough to chalk it up to MS. He had only one band on his Western Blot and a weak positive on a Lyme titer test, to docs this is considered a negative result. However, a PCR test done by the University of North Florida showed positive results for LB. My question is - does anyone know of LLMD(s) in Florida, preferably the south, who aren't semi-quack? I feel like so many of the so called LLMDs are alternative and strange. We just need a good doctor who knows what he/she is talking about and can help us. Any advice is so very appreciated!!! Thank you!!
Thanks Rico, I agree with you about the Barts and thanks for the info. My LLMD says that same thing to me, that the brain is amazing and we don't use most of what there is so it will adapt and I have to be positive that those multiple lesions like things will go away.
I wouldn't be surprised if Bart had something to do with the 'lesions' seen in some Lyme patients. Bart is also a neurological infection. I have found that as my anxiety decreases with anti-Bart meds, I am less worried about things like the lesions. I have heard that even people who still have lesions after treatment recover their cognitive function. The brain is quite adaptable and forms new connections when it needs to. I play word games and read as much as I can to exercise my brain. I can tell I am absorbing and retaining more information than I used to, and I am less forgetful than even a couple months ago.
Don't worry. You will get better! :)
Good! You go, girl. :)
Sending you good brain waves ---- keep us posted!
Your are right, that is why I am anxious for my LLMD to get a hold of the MRI results and go from there. In Texas I was diagnosed with Lupus, and vasculitis which I am sure it not the case. The doctor actually kicked me out of her practice because every time I came in, more was wrong with me and she saw that my blood tests were abnormal so it wasn't like I was making things up. Instead of saying, I think you should find another doctor who might understand things better she actually kicked me out making up some BS that made no sense, to get me out. Good ole SA, TX. One of the many reasons I hated it there. I am trying to be positive and not let those names like lesions make me crazy. I just want to get better and now with an LLMD, I believe I am on the right track.
You didn't direct your comment to me, but it looks to me from a less-than-thorough run through the google search results for 'lyme brain lesions' that there are many people with the same question -- 86,100 hits on google, to be precise.
One of those hits is an article from 1996 in the European medical journal 'Brain', entitled "Inflammatory Brain Changes in Neuroborrelosis", which speaks of MRI results etc. (brain.oxfordjournals.org/content/119/6/2143.full.pdf). At that time, now 15 years ago, SPECT scans did not exist, and the terminology and reliance on MRI were established then and persist now. Lesions was the word that applied to the known illnesses, and so the word has persisted, despite advances in understanding.
For something more up to date, see
which (despite its URL) is not just about spinal fluid but has a short paragraph on each of MRI, SPECT scans and PET scans and their uses in Lyme. Here are the two paragraphs on MRI and SPECT, in full, but without the accompanying photos of scan results:
'Unlike SPECT and PET images which assess brain function, MRI captures the physical structure of the brain. Inflammatory abnormalities in the brain are also assessed with MRI scans. In children with neurologic Lyme disease, the MRI may reveal white matter hyperintensities suggestive of inflammation or areas of demyelination. Up to 40% of adults with Lyme disease may also have small white matter hyperintensities, but it should be noted that the number of hyperintensities increase with age – even among patients who do not have Lyme disease. In addition, certain factors such as ischemic disease or a history of smoking may result in an increased number of hyperintense areas. [photos not included here]
'The white matter hyperintensities are sometimes called UBOs or "unidentified bright objects". In some patients, antibiotic treatment results in a diminution or disappearance of these hyperintensities. Certain MRI sequences, such as FLAIR, are best able to detect hyperintensities. These MRI images in Lyme Disease may appear similar to the demyelinated areas seen in the "white matter" of the brain MRI of patients with multiple sclerosis. The brain MRI of the young patient at the left revealed MS-like lesions in this individual with a fully positive IgG Lyme Western blot indicating immune reactivity against the agent of Lyme disease. Because an MRI scan uses a very powerful magnet, patients with pacemakers or other metallic implants should not get an MRI.
'b. SPECT Imaging
'Single Photon Emission Computerized Tomography (SPECT) is an imaging device that provides a picture of the functioning of the brain. The advantage of SPECT imaging is that it is widely available and relatively inexpensive (compared to PET imaging). SPECT machines with several "heads" allow for increased imaging sensitivity. In Lyme Disease, the most common finding is of heterogeneous hypoperfusion diffusely throughout the brain. This pattern cannot be distinguished from diseases with a similar pattern, such as Lupus, chronic cocaine abuse, or other vasculitic inflammatory disorders. This pattern of heterogeneously decreased perfusion is different from what one would see in patients with primary depression or Alzheimer's disease. Approximately 70% of patients with chronic Lyme disease will have multiple areas of hypoperfusion.
'Although the pattern [in photos not included here] looks like a vasculitis, such a pattern could be produced even if the blood vessels were normal if the nerve connections to the blood vessels were functioning abnormally. In other words, a SPECT scan cannot tell you whether the problem is due to your blood vessels or due to nerve cell dysfunction. SPECT scans also are limited in that the images obtained are rated relative to a part of the brain that is presumed to be working normally, such as the cerebellum or deep gray matter. This may not be true in Lyme Disease. This lack of "absolute quantification" limits the firmness with which one can draw conclusions regarding a SPECT image. Although SPECT imaging may be considered a helpful adjunctive tool in the differential diagnosis of Lyme Disease, it does not and cannot "make" the diagnosis of Lyme Disease.
'SPECT imaging is also used to determine whether the heterogeneous hypoperfusion has diminished over time, perhaps due to treatment. Repeated SPECT scans should be done at the same medical center to allow for a fair comparison across images.'
So bottom line is: the term 'lesions' will continue to be used for historical reasons and because nonLLMDs who do not use SPECT scans and think only in terms of MRI and nonLyme diseases will continue to use the term 'lesions' as well.
HOWEVER do not be frightened by the term. It's just a word, and what counts is finding a doc who knows and understands Lyme, regardless of the vocabulary employed.
Could it be the kind of co-infection that causes some to have lesions and others not? I had migraines for years but none of the docs in Texas mentioned that. Now I find out I have Barts and all my symptoms match that including the stomach issues and neuro issues. Lyme is so varied as to what each person can have, its very confusing. I remember now being in the ER in Texas and the doctor had the Brain MRI scan and tells me well these aren't bad, they are smaller then other lesions I have seen. Well that didn't make me feel better because I rather not have any lesions or whatever they want to call it at all. Then when they said white matter is dead and will never return, well that is really scary. I felt like early onset Alzheimers.
If it is any consolation, my MS doc used the word 'lesion' to describe similar fuzzy white spots in the white matter of someone with migraines. It is not solely an MS term. She qualified the term as generic and that what I have is differentiated from MS lesions. She also said it indicates damage, we're just not sure of the nature of the damage. So, I do indeed have about 20 'sores' in my brain.
In gemeral an MRI is a lousy diagnostic tool for Lyme. i expect that doctors order them when a patient has neurological symptoms they don't understand. In my case, it truly helped in the diagnosis as up until the MRI, no one had any clue what was wrong with me (I didn't have the common symptoms of muscle or joint pain.) It was only after I started researching what can cause brain lesions that I came across Lyme. However, no one knows why some Lyme patients develop lesions and others don't, even with neurological symptoms. No one knows why some heal and others don't. Some may have already had the lesions from migraines in the past.
I have read of people whose lesions didn't heal, and yet they fully recovered from Lyme. I have concluded they just don't matter, and I am not going to worry about it.
Thanks for tolerating my rant. I kept getting interrupted so it's twice as long as I intended, but glad it wasn't entirely incomprehensible.
That's how I feel about it too, I can take the idea of swelling that will go away with treatment, but the idea of a 'lesion' is too freaky esp when it's not. Or maybe I just fixate on the 'lesion' thing. Dunno.
Docs are not very familiar with Lyme think in their usual way, which is to use MRI rather than SPECT, same with wanting to do spinal/lumbar tap, which really doesn't show much re Lyme.
I'll be quiet now.
... and you hang in there!
Jackie, I really appreciate what you say. Since my MRI was taken in good ole SA,Texas where they didn't know anything about Lyme, when my LLMD gets the results, I am going to mention what you said. Being told white matter in my brain is damaged and wont ever come back is scary, Lesions on the brain does not sound good either but whether its multiple lesions or swelling, something caused the impaired memory and the inability to walk or open the fridge door and that is what I am concerned with, not the name of what I have. I want whatever it is to go away. It is a much better chance for it to go away with treatment for Lyme rather than an autoimmune disease.
Part of the difficulty with this terminology may be that nonLLMDs are more likely to (1) perform MRIs, which produce (2) fuzzy spots on the results which look to a nonLLMD like (3) MS (multiple sclerosis).
MRIs are not particularly diagnostic of Lyme, but here we are using MS and MRI terminology for Lyme.
That's what bothers me. If the only tool one has is a hammer, every problem looks like a nail. Just because some hands you a hammer doesn't mean you are about to strike a nail with it ... you might be lining up try to drive in a screw or a hook or something that a hammer has no useful relation to.
Lesions in MS are apparently different from what are being called lesions in Lyme, and it is that unfortunate crossover in terminology that is concerning. "I have a lesion" gets interpreted as it would in an MS diagnosis, when the disease process in MS is quite different from that in Lyme.
SPECT scans, which are the diagnostic weapon of choice for many/most LLMDs, show brain perfusion, meaning blood flow. Swelling of the brain, as occurs in Lyme, narrows the blood vessels, which lessens blood flow, which causes some of the symptoms in Lyme and shows up on the SPECT scan as low perfusion = low blood flow. This happens in Lyme and (to my knowledge) does not happen in MS.
Picky? Yeah, maybe. But I am concerned that leaving people with the impression that they have 'lesions' in their brains when what they have are the brain equivalent of shoes a size too small is doing a disservice.
If you define a lesion as an undifferentiated fuzzy spot on an MRI, that's understandable, but the term 'lesion' gets used to mean a sore, a problem, a bad thing. That is what I am concerned about and objecting to.
'Lesion' *can* mean just a fuzzy spot, but in MS it has implications beyond a mere fuzzy spot. That's what I am concerned about -- that more meaning is put onto the term 'lesion' than is warranted in a case of Lyme, and leads people to think they have tumors or growths or sores or something other than low blood flow. It's two different mechanisms, and to use the term 'lesion' to mean both (1) the demyelination (that is, actually damage to the brain tissue) that occurs in MS as well as (2) the undifferentiated fuzzy spots of swelling found on an MRI in Lyme leads to confusion about what is going on in the brain -- esp since an MRI is a lousy way to diagnose/track a Lyme infection.
Given that an MRI is not particularly diagnostic of Lyme, why use MRI terminology on the lousy results that come from an MRI performed on a person with Lyme?
I would far rather understand that my brain is slightly swollen and the blood flow is reduced slightly, thus producing some of my Lyme symptoms, than think that I am walking around with a sore or a blob or something icky in my brain.
Why use MS terminology from an MS-related diagnostic test when what we are talking about is not an autoimmune disease (MS) but an infectious disease (Lyme)? (I think this confusion comes from the turkeys at IDSA who think there is an autoimmune component to Lyme that isn't cured with a couple weeks of antibiotics.)
Lyme is caused by a bacterial infection. MS is autoimmune. Using MS terminology in talking about Lyme diagnosis and testing perpetuates the mess that the medical community is in and makes it harder for patients to follow the music.
Sorry if this sounds like a scolding or a lecture, but I want to put the point on the record for anyone who might stumble on this email chain going forward. The implications of poorly applied terminology affect the perception and understanding of Lyme, its diagnosis and its treatment.
Cheerio! Your cranky pal J.
My MRI was done in Texas and was some how misplaced when I moved to FL so my LLMD is getting a copy. I do remember that the report said brain lesions with some white matter damage. I was told by the doctor in Texas (which I don't put much faith in) that the white matter damage won't ever come back. My LLMD said once she sees the report she can tell me better but usually the Lyme lesions could go away with treatment. I just know that I could not remember anything and could hardly walk when I had the MRI done. Now, after some treatment my memory is better and I can walk with a cane for times my balance is still off. I also had muscle weakness last year and haven't had it this year at all.
Can you define a bit more what your doc means by 'lesion'? The definition I find online is: "A region in an organ or tissue that has suffered damage."
There has been some back and forth here on this site about 'lesions', and I've objected somewhat to the use of the word, because to my understanding, Lyme disease does not produce directly damaged tissue like a sore or defect, as in MS: instead it causes swelling that reduces blood flow to an area of the brain.
MS causes lesions; Lyme causes swelling. When the swelling goes away with treatment of the underlying disease, then brain function improves.
Pasted below are portions of a (now ten-year-old) paper from the ILADS website, entitled 'Controversies in Lyme Disease Neuroborreliosis', by Audrey Stein Goldings MD (a neurologist apparently still practicing in Dallas TX ... wonder if she is still treating Lyme?):
=========following is from Dr Goldings' article=================
The objectives of this article are to cover issues related to Lyme disease that are not even-handedly addressed in the current literature. It will:
-- Present a practical approach for making the diagnosis of neuroborreliosis,
-- Explore the other side of the post-Lyme syndrome (i.e. the likelihood of chronic ongoing infection),
-- Discuss the relationship between MS and Lyme,
-- Critique the current regimens published for treating neuroborreliosis, and
-- Present my own approach which may differ from some leading authorities.
I. NEUROBORRELIOSIS: MAKING THE DIAGNOSIS
Because of difficulties in making the diagnosis of neuroborreliosis, the physician will need a familiarity with the most common forms of presentations, which will be emphasized. The following points will help evaluate the patient for neuroborreliosis:
-- For most patients, systemic features of disease coexist with, or predate, neurologic manifestations.
-- Both central nervous and peripheral nervous system involvement is frequent with Lyme disease and typically occur together.
-- Laboratory data may or may not confirm the diagnosis, and other disease in the differential diagnosis must be evaluated thoroughly in cases where diagnostic uncertainty exists.
-- Although history of exposure to B. burgdorferi should be sought, for various reasons, patients may not remember a history of a tick bite, or the pathognomonic rash particularly if the disease is presenting years after the exposure.
-- Early on, personality changes, psychiatric symptoms, or cognitive manifestations may be the first, and occasionally the only, symptoms that the patient or family is aware of.
CLINICAL DESCRIPTIONS OF NEUROBORRELIOSIS
CENTRAL NERVOUS SYSTEM
THE ASSOCIATION BETWEEN MULTIPLE SCLEROSIS AND LYME DISEASE: THREE DIFFERENT SCENARIOS
1) LYME CAN LOOK LIKE MS BUT SYMPTOMS AND PATHOLOGY RESIDE OUTSIDE THE CENTRAL NERVOUS SYSTEM
Lyme may present as a MS-like illness, but on many occasions the pathology is not actually in the CNS. Since chronic Lyme symptoms often are predominantly shifting, vague, behavioral-psychological, psychiatric, and, as mentioned, neurological, they are likely to conjure up the diagnosis of MS in patients and physician alike. However, the existence of pathology outside the CNS should rule out the diagnosis of MS. Some of the vague symptoms that can be mistaken for MS include those that are better attributed to peripheral nervous system damage, as part of the mononeuritis multiplex that may occur. This might cause numbness, tingling, facial weakness, diplopia, etc. The diagnosis of MS cannot be made in the absence of CNS symptoms and signs. MRI and CSF findings would also help support the diagnosis of MS. In addition, a significant CSF pleocytosis may occur with Lyme disease, which should not be present with MS.
===>>> 2) OTHER LYME PATIENTS DO HAVE CNS LESIONS, BUT THESE ARE GENERALLY DISTINCTLY DIFFERENT, CLINICALLY, AND PATHOLOGICALLY FROM MS
Patients can have CNS lesions in the brain or spinal cord with Lyme disease. The European literature includes many more cases than the American for encephalomyelitis, strokes, etc. In those cases where there is focal involvement of the brain or spinal cord, it may be more difficult to distinguish neuroborreliosis from MS. Again, a brisk CSF pleocytosis would help diagnose Lyme and the specific aforementioned test for CNS Lyme antibodies. Simultaneous appearance of peripheral nervous system abnormalities or arthritis should suggest the diagnosis of Lyme.
3) ANOTHER GROUP OF PATIENTS HAS MULTIPLE SCLEROSIS AND LYME
There are some patients who have a clear-cut preexisting history of MS before the onset of Lyme disease. The Lyme appears to accelerate their clinical course. For others, it appears to be the initiating infection that triggers the MS. These patients are most likely genetically predisposed to MS and the Lyme bacteria exerts its major effect by “turning on” immunologically directed CNS injury. It is not uncommon to get a history of the onset of an exacerbation of MS related to infections, so Lyme exacerbating MS would be expected. HLA Class II molecules determine the intensity of the immune response to pathogenic foreign or self-antigens. With MS, the HLA-DR4 DQw8 haplotype has been associated with chronic progressive MS and the HLA-DR2 DQw6 haplotype has been associated with susceptibility to both chronic progressive and relapsing or remitting MS. It is possible that in genetically predisposed patients of certain HLA types that infection by Lyme bacteria would cause a high production of cytokines that would mediate the demyelination and destruction of oligodendrocytes.
Most recently, researchers are studying positive outcomes when antibiotics that are most useful in treating Lyme disease are used to treat “MS.” ...
[[Audrey Stein Goldings, MD is a private practice neurologist in Dallas. She is member of ILADS and a founding member of the Board of Directors.]]
==================end of article excerpt=================
My not-very-well explained point is: don't get hung up on the idea that you have 'lesions' or 'sores' or 'holes' in your brain or central nervous system.
Lyme doesn't operate in the same way that MS does, in many respects. The term 'lesions' gets used around here a lot, and it makes the infection site sound like the nasty scab I would get when I fell off my bike.
Lyme is much more subtle than that and messes with body chemistry in its own unique way and hides in areas of low blood flow, like cartilage, worming its way through body tissue.
In some ways, I suppose that's worse than having a boo-boo in the brain, but it's just not the same as MS, which is a demyelinating disease: "Demyelination is the term used for a loss of myelin, a substance in the white matter that insulates nerve endings." That is not what Lyme does.
So I don't have an answer for you, except that I'm not sure that it helps to think about Lyme in a way that it doesn't actually work. Inflammation, yes. Lesions, no. Sorry!