My MRI report states, periventricular, juxtacortical, subcortical white matter t2 hyperintense lesions. Signal abnormality is also noted in the corpus callosum posteriurly. Differential would include ischemic, demyelinating, infectious/inflammatory causes. What does this mean? From what I'm researching this could point to MS but I've also been tested for Lyme, which came back negative and know that means nothing and have heard that Lyme can be misdiagnosed with MS.
"Differential would include ischemic, demyelinating, infectious/inflammatory causes"
I can explain this part...
Ischemic means the lesions are caused by restricted blood flow - this occurs in lyme, don't know about MS
demyelinating - if positive, that means MS, if negative, that means not MS bus possibly lyme
infectious/inflamamtory - the only infections that can get in your brain and potentially cause lesions are lyme, syphillis, streptococcus, and some viruses ( but the viruses cause acute encephalitis as far as I know, so you would really know about them).
As far as the stuff about lesions goes, it is just telling you which parts of the brain they are in. Lyme disease can go to any part of the brain. It loves going to the corpus callosum in children, among other places, but I don't know if the same applies in adults.
Sorry that's not a perfect explanation, but that's all I know on this.
Do you want to give a full symptoms list? We could probably give you more info and suggestions that way.
Wow, thank you so much for getting back to me soo quickly!!
I have so many symptoms over the years, it started about 15yrs ago, I went to a doctor due to extreme fatigue and memory loss, brain fog, couldn't remember a damn thing!!
He did the normal blood work, nothing showed up and he said I was depressed and put me on antidepressants. I remember thinking, hmmm...I'm not hopeless, sad, suicidal, just feel like crap. I've been on and off all different antidepressants over the years but weaned myself off over a year ago. One of them is used for arthritis and fybromialgia pain, since then, had back and knee issues, xrays last year showed degenerative arthritis of my spine and not much showed on the knee.
I've always been fatigued and brain fog but lately really bad, nothing has helped that and just assumed that's the way it is. I don't really go to doctors much because feel they just prescribe pills to mask things, not improve anything.
However, a few months ago started having dizzy spells on and off, then 4 weeks ago woke dizzy, not just a spell, it was constant, that I didn't want to ignore. It lasted 4 weeks, I've been on Ceftin for about 2 weeks and the dizziness it gone for the most part now.
Test so far, reg blood work, nothing's off, except for vitamin D on the low scale of average, thyroid is fine, Lyme negative, went to ENT, no issues there, he suggested MRI and neurologist. In the meantime I did find a LLMD, she did other blood work and stated everything neg except one of the bands shows slight possibility for Old Lyme but not conclusive and B12 is a bit low and it's my decision if I want to continue with treatment for Lyme. Another symptom that started this past winter, numbness of my fingers, as I'm typing my index finger is going numb but it happens on and off. Now with the MRI, my regular doctor has the results since Monday and isn't calling me, so I went to the imaging center last night and picked them up and have no idea what this means. Thanks again!!
Try not to freak when seeing the term 'lesions' in connection with your MRI. We just had a marathon discussion here on this site about the use of that word. It's the commonly used word to describe fuzzy areas on an MRI, but it has such an alarming tone to it that it really bugs me.
So don't get wigged out about lesions, okay? It just means, in an MRI, a fuzzy area.
Here's the deal: MRIs are not particularly diagnostic of Lyme. Lyme and MS are two completely different ailments, but most docs don't understand Lyme and keep looking at it through the lens of MS.
There is another test that Lyme docs like to use called a SPECT scan, which looks for areas of low blood flow in the brain. This is specific to Lyme, meaning it won't show up in other conditions, so using a MRI (which shows up fuzzy spots for very different diseases, without differentiating among them) is not particularly useful.
Your brief description of your LLMD's reaction didn't give me a lot of comfort. Here's one issue: when you've perhaps been infected as long as you have (15 years!), your immune system is likely no longer reacting to the presence of Lyme, and it is the reaction of your immune system that the usual Lyme tests measure. So you can still have the infection and the tests show nothing at all.
There are two possible approaches to get around this situation: (1) have PCR testing, which looks not for your immune system reaction to Lyme but instead for bits of Lyme DNA in your blood; this test is done by IGeneX, which many docs diss, but Lyme specialist know is very useful; and/or (2) have an antibiotic challenge, meaning you are given antibiotics for a brief period of time, which willl wake up your immune system to produce antibodies to the Lyme that may be present, and then re-test; after a while, your immune system just gives up making antibodies against the infection, assuming that the bacteria are all dead, which they may not be, just hiding.
If your current doc has not done either of these approaches, I quietly take copies of all your test results to a new doc for a new look. Not all Lyme docs are created the same, and it's a hotly contested area of medicine, so you gotta be suspicious. I went through 20 docs before I got a diagnosis ... or more accurately, I got a positive Lyme test, but the doc said it must be wrong and IGNORED IT!!! So that's when I went on the hunt for an LLMD, and got diagnosed.
There is no standard for what makes an LLMD: it's a state of mind, and there are some real goofballs out there.
Also, you have gotten infected again recently with another dose of Lyme or a co-infection, which can make you feel worse. There's no rule that says ticks can't bite somebody who got bitten before.
You've suffered long enough -- be aggressive! NJ is definitely Lyme country, and yet many docs still don't get the concept.
I am guessing that your current doc, in saying that the Lyme tests are negative, may not have done anything more than a Western blot, which is notoriously inaccurate. It is not supposed to be the final word.
Get copies of all your tests and keep a set for yourself. You don't have to tell your doc you are going for a second opinion; the tests are yours, you paid for them, just always keep a set of your own bec. getting them later can be difficult just bec. medical staff is lazy ... er, overworked.
Email to --
contact [at] ilads [dot] org
-- and tell them your location and they will send you LLMD names. I'm not medically trained, but I've lived through Lyme and I would definitely get a fresh look from a different doc.
Let us know how we can help -- you are clearly a strong person to have been through all you have already -- you can do this! You deserve to get the best help available. Take care --
Yeah, I'm glad you said that because I'm not too impressed with the LLMD so far, I was hoping for at least something, not just it's up to me....so gonna think about that and yes, the current doc only did the W. blot. This is frustrating, UGH!! and I've only begun to look into it, can't even imagine what you guys have been through!!
I live in Northern NJ, tick haven, lots of woods, used to do a lot of hiking and have had horses and dogs all my life....
OH, I don't know if I've been reinfected and it's possible only recently been infected, I have no way of knowing if that's what it was 15yr ago.
But now that I think of it....last year in FL around this time I was on vacation and woke up with what I thought was a spider bite on my leg, which then got a huge red ring around it, not the bullseye, and I went to urgent care there and they said it was a staph infection and put me on antibiotics. But supposedly there's no Lyme in Fl, right??????
Although we don't post the names of docs here in the open (to protect friendly LLMDs from the miserable anti-LLMD squads out there), you might also post a new message titled something like "Seeking LLMD in New Jersey" or whatever area you can easily get to, and ask for a reply through private message (PM) on this website.
There is an LLMD in Montgomery Cty MD that is probably too far from you, but his LymeMD blogspot is worth reading, just because he thinks out loud about Lyme, and that's quite refreshing. It helps me formulate and frame my own questions and issues.
The ILADS website also has good stuff on it, tho much is aimed at docs. Depends on your tolerance for medical jargon Burrascano's guidelines posted there are good reading, if you're up for it. ILADS is the main voluntary group for LLMDs, but as you're finding, the field is in flux, and so you gotta watch the watchdogs. Like being really really sick isn't enough!
Hang in there -- you're making the right moves imho -- stay in touch --
Sounds like you're asking good questions. I would say your "LLMD" isn't really Lyme Literate if she thinks that a negative test excludes it. Mine told me that the most likely patients to test false negative have had it for a lomg time and/or are very sick. It can mean the immune system isn't putting up much of a fight anymore.
Did she test you for coinfections? (IGenex is the best!) They can complicate the picture and some need to be treated with different abx than used for Lyme.
It does sound like you had a tick bite in Florida. The defined ring is indicative of Lyme, and the bite is often mistaken for a spider bite. Be sure to tell any doctors you see about it. It could be that you picked up a coinfection on top of a long standing Lyme infection and your immune system could no lomger keep up.
A doctor in Yale's Lyme group recently put out a map of the eastern US with concentrations of deer tick populations. It showed almost nothing in Florida, but I saw a CDC map of tick populations that showed nearly all of Florida has Ixodes ticks. The Yale doc said that any positive Lyme test results in the south should be highly suspect unless the patient had recently travelled to a Lyme endemic area. Yeah...tell that to all the people in Florida who get Lyme every year! I personally think it rises to the level of malpractice to tell doctors to ignore positive test results in a patient with symptoms. Heaven help those of us who test negative!
Re: the MRI... The "lesions" can be caused by several things and MRIs are not always useful in diagnosing Lyme. But I do believe they are significant if you have Lyme symptoms. Essentially what you see in your MRI is consistent with what LLMDs have seen in some Lyme patients..
When he saw my 20-odd small lesions, my first neurologist was really stumped. He said it sorta looked like MS, but not really. He went looking for more signs of MS, cancer, and sarcoid. I came across Lyme Disease as a possibility when I googled "MS like lesions" and found a list of known causes on an NIH web page. I didn't have the symptoms of any of the other possibilities, so I started researching Lyme and found that all of my symptoms could be explained by Lyme.
My MRI and my on line research is what convinced ME that I had Lyme. (Then I had to find a doctor who thought so, too!) The good news is that a couple of my lesions have shrunk in the last 6 months. I highly doubt they will all heal completely, but I am not worried about it. I have recovered most of my cognitive abilities and that's what really matters. The brain has a remarkable ability to work around a problem and form new connections.
I hope you find a really good ILADS doc soon! If that one band that you showed is borrelia specific, that should be enough for an LLMD to start treatment, given your symptoms.
Hiya! I definitely think you should follow Jackie's advice in pursuing the lyme diagnosis. Don't abandon that possibility until you are totally sure it really is negative. I agree with the others that any rash with a ring sounds lyme-like.
I also think you need a good ILADS doctor to guide you through a test for bartonella. Bartonella has the same symptoms as lyme, but usually causes worse brain symptoms. Plenty of ticks carry bart but not lyme. Some strains of bart cannot be lab tested so you may need a good doc to sift through symptoms and give you an antibiotic trial.
Another condition that fits all your symptoms and brain lesions is vitamin B12 deficiency. It is amazing how useless most doctor are at diagnosing it. Most people are ill for years before getting a diagnosis. The blood test may say lowish when really you are atrociously deficient. There are various genetic polymorphisms that mean people cannot convert inactive B12 (as absorbed from food) into, and between, the various activated forms. That means you could have B12 shots and still not get better. If you are taking oral B12, it will most probably not get into your blood stream. I can suggest a doctor who frequents another forum and who is really helpful at explaing all this (which I am not!), he is called Richvank and if you send him a PM on this forum http://forums.****.me/index.php I am sure he will make some suggestions about tests you may want to ask for. I am called Athene on that forum, you can tell him I sent you!
You guys are all awesome and I'm so glad you're here!!
The LLMD tested for the following:
Assay serum Iron, one of the iron came back a bit low
Vit D, 25 Dihydroxy
Ria Assay for B-12, came back a bit low
Antibody, Lyme disease
Serum iron binding test
She stated one of the bands showed "something" that could be "old" Lyme but didn't say which one and I didn't ask. I'm learning I have to start asking everything!!
I don't have the lab report, so I don't know levels but am having it sent to me.
The LLMD didn't rule it out, just said it's my choice if I want to continue on antibiotics. I guess I was just hoping a LLMD would give me a bit more of whether or not she felt that whats going on. Noncommittal either way doesn't help, just her honest opinion would suffice. Yeah, I know some of them are very cautious and with good reason.
To me, and I am so not a high maintenance patient, I swear....lol, she just seems uninterested and cold.
I emailed my MRI results to her< the LLMD, on Wed, since my reg MD isn't getting back to me and she called yesterday and said she'd take a look and let me tomorrow, which would be today.
I know I'm not the only patient for these docs and there's a lot of people sicker than me but really??? A week and a half to get someone to discuss my MRI results with me is a bit much!! So anyway, I set up an appt with my reg MD for today and will discuss what he thinks. I'm assuming if he thought it was all good the nurse would have just called to tell me that...
Went to my MD today to discuss MRI results, he says MS, that he doesn't believe it could be Lyme, next steps neurologist. LLMD never even bothered getting back to me. So done with her. Ugh, I don't what to believe, very confused but not ready to accept MS, not that Lyme is a picnic but I think if I had to choose I go with that...hmmm...maybe not...anyway, thanks guys!!
I pretty much AM in your situation. I have been told MS by 2 Neuros, an MS Specialist, and a regular Ophthalmologist, but none of them addressed the fact that I have run a fever more than 1/2 the time since I worked a forest fire in 2002. I don't know if I got bitten then or not, but it makes sense to me that ticks and other biting insects would have been in a frenzy with their home on fire. I haven't felt good since then, but I definitely got bit by something in Oct. of 2011 and got a rash that looked a lot like the Bart Scratch Rash. After some steroid treatment for the rash, that was the start of about 3 months of hell for me health-wise, but again, no mainstream doctor seemed to think the bite was worth pursuing beyond a worthless ELISA test.
The LLMD I went to see actually took these things seriously and started me on ABx.a few weeks ago. I have been herxing something fierce! I actually had to take a break this week in order to be able to work the 2 days per week I am trying to maintain. I hated to do it, but I felt like I had a hangover combined w/ the flu and had just started an exercise program! And I have a physically demanding job w/ irregular hours. Once my body caught up with flushing out the dead bacteria, I felt amazingly better than I've felt in months...maybe years! I'm definitely not back to normal, but there has been a true improvement.
I have many risk factors for MS: I am Scottish, I spent my teen years in Northern Idaho, and my dad was Dx w/ "Atypical Parkinsons" for years, but his Dx was recently changed to MS instead. All of these things really up my odds greatly, so my having MS is not out of the question at all, but since they strongly suspect that an infection of some sort causes it to start up, it seems logical that for SOME people Lyme's could be the catalyst. And if I really do have MS, it doesn't mean that some &^%$ tick wouldn't take the opportunity to bite me anyway! I am choosing to treat the Lyme's/co-infections first and see if that will put an end to the MS or MS-like symptoms. It just seems more logical to me to try to take care of the infection than to try to regulate my immune response TO an infection.
If you were unlucky enough to get a LLMD that isn't going to be a good match for you, I still think it would be worth it to give this one, one more chance or find another LLMD. Just a thought :)
I hate to throw fuel on a fire, but consider the possibility that your father has Lyme.
I have relatives in No. Idaho and watched an uncle descend into what they were calling Alzheimer's, but you could see in his eyes he knew who everyone was, but simply could no longer turn his thoughts into words. He would sit and listen to everyone talk, and tears would run down his face because he could hear and understand, just not respond. He was a real Woodsy Owl and lived on a lake, so tell me he wasn't ticks from head to toe.
There is some thought out there that the apparent epidemic of Alzheimers in recent years may instead be Lyme. "Atypical Parkinsons" that was reinterpreted to MS in your father? Sounds like the docs are reaching. Anecdotally: my family tends to live well into their 80s and 90s, and while my great-grandparents and grandparents and great aunts and uncles who lived their whole lives in the woods in various parts of the country got old and sometimes frail and cranky, they never got Lyme symptoms. NONE of them.
So, I have difficulty accepting the ease with which MS diagnoses are doled out these days. I would do what you are doing: treat for Lyme and see what happens.
It's good to hear that you are feeling better as the bad stuff washes out of your system. That's very exciting news! I work hard on having a healthy diet and taking vitamins etc. these days, and it really does make a big difference. I gave up sweets entirely, since the bacteria seems to love the sugar ... but I do eat fruit liberally, most apples and bananas, and bananas esp. have a fairly high sugar content. Oh well. I also avoid dairy and soy and wheat, and if I eat something that has any of those in it, I can really feel the difference the next day or two. Those may be allergies particular to me, but it does show that diet matters.
Good for you in what you are doing -- it is what I would also do in your situation. Sending you all good wishes and thoughts -- keep us posted!
We all agree that we need to check into Lyme's for my dad. Unfortunately, there are no LLMD's in Idaho and the nearest one is nearly 400 miles away with a long waiting list! We made an appointment, but getting there is going to be very difficult. Dad just recently went into a nursing home and that is one reason they finally changed his Dx: Parkinson's meds make him worse, not better. We have told the Drs. this for years but instead of believing us, they always labeled him as non-compliant w/ Rx. Now that some medical professionals documented how much worse he gets w/ the Rx, they changed the Dx to MS. What is weird to me is that he has never even had a tremor, slow progression and went to at least 5 or 6 Neuros over the last 20 years w/ no prior knowledge of each other. Parkinson's and MS kept coming up all along and I'm not sure why Parkinson's was finally settled on, but I've never been convinced.
That is horrible about your uncle! That sounds pretty "atypical" for Alzheimer's, too, to be there mentally but not be able to talk!
I eat very healthy, usually, but I can definitely tell the difference if I slip up and eat gluten! The aches and pains really pick up. My daughter made biscotti and has it under a cake dome on the kitchen island. It is pretty hard to resist, but I am at the top of my pain threshold already! Watch out for bananas during mosquito season. For some reason, eating bananas attracts the little boogers!
Sorry Gambs 1, I didn't mean to type so much on your post :)
I'm sure you've tried this, but thought I'd mention it: I just googled 'llmd spokane' and got lots of leads ... not that they necessarily 'lead' anywhere, but in some areas the LLMDs just hide out. Also the contact [at] ilads [dot] org may have some listing for an LLMD. Just a thought. Best wishes to your family --
No, no evoked potential test yet (had to look that up ;) I haven't been to the neurologist yet, going to make an appointment this week.
My Mom has a friend that was also diagnosed with MS and turned out to be Lyme, he is very active in the Lyme community now and gave us the name of his LLMD.
So, the plan is to follow up with the neurologist, since my insurance will cover that and also make an appt to see her friends LLMD :) and hope to get some more info soon.
In the meantime, the dizziness that went away is now back, started again today. I felt pretty good for a few days, then yesterday exhausted and weak again and today dizzy.
I've been taking the Ceftin for almost 4 weeks, could it be that it started to help and now going into a herxing type thing or would there be no relief and just go into the herxing before feeling any better?
Valky, so sorry about your Dad, hope your able to find someone closer!! I read some good stuff about coconut oil helping Alzheimer, as well as, a bazillion other things, it's worth a try...
Thanks everyone and hope you're enjoying your holiday weekend!!
Sounds like you need a doc who has ears. Unfortunately most of the serologic tests available for diagnosing Lyme have a very poor specificity. MRI's and spect scans are a little more diagnostic, but again need a radiologist capable of disseminating between Lyme, MS, or small vessel ischemic disease, Again unfortunately most radiologists are pressed for time and perform only a perfunctory exam.
It is extremely important to differentiate between Lyme and MS as the treatment regimens are vastly different. If you have a Lyme infection, or even one of the co infections, and you are treated for MS then things may become drastically worse or irreparable damage could occur.
Diagnosis of Lyme is based mainly on clinical exam, if you cannot find a good Physician well versed in the diagnosis and treatment of lyme, then find the best diagnostician you can. If at any time you feel your physician is not hearing what you are saying, excuse yourself and go find another.
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