Been diagnosed with Stage III Lyme Disease, then told I wasn't. Told I fall under MS, then told I don't = so confused. Please share your thoughts about these MRI results: "There are minimal periventricular hyperintensity and several small scattered T2/FLAIR bright signals in bilateral frontal, and right parietal matter without mass effect or contrast enhancement. The midline structures including corpus callosum and the region of pineal gland are unremarkable. There is about a 4 x 3 mm mildly T2 bright signal in the right-sided petrous apex abutting the vestibule of the inner ear. There is mild mucosal thickening of bilateral ethmoid sinuses and in the right maxillary sinus.
Small T2/FLAIR bright signals in bilateral cerebral hemispheres are nonspecific but could represent CNS infection such as Lyme Disease. Other considerations would include migraine, ADEM, vasculitis, drug induced toxicity, and demylinating processes."
Greetings. Sorry to hear you're getting whipsawed by the medical profession.
There is a huge fight going on about Lyme and how prevalent it is or isn't, how serious, how to diagnose, how to treat, etc.
I'm not medically trained, so can't comment on your MRI result, except to say generally:
-- A Lyme specialist would likely not rely on an MRI to diagnose or rule out Lyme. It's like looking in your throat to see if have have a sprained ankle. A Lyme doc would more likely use a SPECT scan.
-- The report you quote from is a typical download from a radiologist covering the waterfront. At least the rad doc mentioned Lyme! That's progress.
-- Since you have a Lyme doc (the one who diagnosed you with Lyme), I'd take the test results and go talk with him/her about how he/she reads them. There may be absolutely nothing there in the report that contradicts a diagnosis of Lyme.
There are many docs who do not 'believe' in Lyme, and are happy to put patients on tranquilizers, painkillers, psychotherapy, steroids, and all sorts of stuff that doesn't treat the bacterial infection that Lyme is.
Seriously: go see the Lyme doc. If you have decided not to go back there, why is that? Did you not like him/her, or trust him/her?
Above all, don't freak out. Lyme messes with the brain chemicals and thus with emotions, so you're entitled to feel freaked out for all sorts of reasons, but hang on. Let us know a bit more about your experience so far and maybe we can, from our lay perspective, give some comments.
Deep breaths. It will be okay. I've been kinda where you are.
My sister had a difficult case of lyme's disease. She eventually had to go to an infectious disease doctor so you may want to consider that as well rather than a regular GP if that is who you are seeing.
Hi -- My only response would be to say that your sister was very lucky -- infectious disease (ID) docs are often hard core against the concept of Lyme disease as anything serious or requiring more than a couple weeks of antibiotics. One of the first investigators of what became known as Lyme was an ID doc, and he is still high up in the IDSA (Infectious Disease Society of America), where the standards for diagnosing and treating Lyme are, from what I read and what I went through, deficient and out of date, to put it mildly.
There are, I am sure, ID docs who are enlightened about Lyme, but they are rare if they exist. Lyme specialists can come from any discipline, but any doc who adheres to the diagnosis and treatment guidelines of the IDSA is, in my experience, unable to adequately appreciate, diagnose and treat Lyme disease, due to institutional blindness and stubbornness.
A regular GP can be a fine Lyme doc: it's a state of mind and attitude, not the letters after your name.
Interesting. In her case she didn't get relief from the antibiotics they were giving her even after a couple of weeks. This is why she sought out an infectious disease doctor. Her body was not responding. From what you have written, she was lucky, he turned out to be very good. I believe the end result was to change the antibiotic to something else and take it for a longer period of time. Although she still suffers from joint pain especially her hips. I hope you all feel better soon.
Sorry to stick my nose in here, just ignore if I'm being annoying, but ...
-- did any of the docs test for diseases other than Lyme? Perhaps half of the ticks that carry Lyme also carry other similarly awful diseases that need separate testing, diagnosis and treatment. These are very serious diseases all on their own. Been there.
-- the body can hold Lyme in check for a long time, but the bacteria are chugging along in the body, staying happy, waiting for an opportunity such as another illness which distracts the immune system and allows Lyme to go crazy, so feeling well may mean the bugs are just slumbering. Some people have more body pain and less neuro involvement, and your sister may be one of those, but bacteria don't respect the blood/brain bacteria, so it's not two separate infections but instead (from what I read) a difference in manifestation. That doesn't mean the infection will not resurrect and manifest in new ways later, which argues for accurate diagnosis and full treatment.
-- the fact that your sister continues to have joint pain is something I would not ignore. Lyme bacteria, to evade the immune system, often hide in areas of low blood flow, such as cartilage, thus joints.
-- I would suggest you read at the ILADS [dot] org website, esp Burrascano's guidelines, and also anything at the Columbia University Lyme research center website. Not trying to stir up trouble or anxiety, but a smoldering disease is still a disease that may awaken to very bad effect. I personally have to wonder about the current epidemic of Alzheimers and whether it is related to the spread of Lyme and related infections. Will spare you my further ruminations on that topic.
Would be a pity to allow a smoldering Lyme or other infection(s) carry on in your sister, when treatment is doable. Just sayin'.
On the upside of a scary MRI...it is atleast objective evidence that something is wrong, so it is less likely that you will get labelled as crazy. My MRI was looking like MS, which sucked.... but in hinesight... it wasn't just subjective symptoms that I was trying to convince the doctor that I was ill with.
What are you symptoms like? Do they fit any of the MS patterns?
I will certainly pass the information on to my sister as she does have a lot of joint pain. About a month ago she had joint pain everywhere. Almost like a fibromyalgia. She did go to the doctor's and i think they did another lyme test which was negative. I suggested possibly a strep infection since I had one at one point without a sore throat but horrible joint pain to the point where I could barely walk. I too thought it was lyme disease but turned out to be rheumatic fever. Now I have a heart murmur all of a sudden and I'm wondering if the rheumatic fever is the cause of that. In any case, thank you for the information and I will give the website to my sister. Take care!
Thanks for all of your comments. I don't see the original doctor that diagnoses me with Lyme becuase I am no longer affiliated as an Army dependent. She referred me ot various other physicians who cannot seem to agree on what is going on. It seems I will need a Spianl tap to be more sure but no one seems to want to actually conduct one. I don't understand why they are so hesitant given my history. My most recent MRI shows that previous lesions are not gone, so they want to take a "wait & see" approach. Still battle serious fatigue, joint pain, headaches, ect, but I have gotten to the point where I dismiss my symptoms which I am sure is NOT a good thing. Just tired of going around and around with no definitive answers!
You're quite welcome ... many of us here have been through the mill and so are happy to share what we've learned, both the hard way and otherwise.
From what I read, spinal taps are NOT useful to diagnose or rule out Lyme, because spinal fluid is not where Lyme bacteria congregate. It might rule out other possible illnesses, but would not be useful to confirm or rule out Lyme.
A Lyme specialist would know that, and would also know what other tests to order and how to interpret your history and symptoms. If you need help finding ways to find a Lyme specialist, let us know your geographic area and might have some suggestions.
In any event, Lyme won't just go away by itself. It sometimes goes underground when your immune system suppresses it, but the bug is still doing its dirty work.
Re fibromyalgia -- from what I can tell (and I'm not medically trained), this is a catchall, made-up name for a 'syndrome'. A syndrome is a collection of systems. Fibro = fibers, as in muscle fibers; myalgia = pain. Duh. You'll notice the commercials for medications to use for fibromyalgia say that fibromyalgia 'is thought to be caused by overactive' nerves or muscles or whatever. In other words: it's a collection of symptoms that they don't understand and have no understanding of, but they are tired of people complaining, so they gave it a name so people will shut up and go away and take their painkillers. Sure, all of that's possible, but these same docs sneer at Lyme as a cause of anything significant. Hmm.
You say: "She did go to the doctor's and i think they did another lyme test which was negative." The tests are NOT accurate perhaps half the time for many reasons. A Lyme specialist takes history and symptoms into account, and also knows how poor an indicator the tests are. I'd find a Lyme specialist for a work up.
You say: "I have a heart murmur all of a sudden and I'm wondering if the rheumatic fever is the cause of that." From what I read, yes, heart problems can definitely be related to rheumatic fever. You should talk to your doc about that, it's important. I don't know any more than that, but it can progress and and needs to be considered carefully.
I'm not a doctor, but hte lymne diagnosis sounds correct to me.
I had a similar MRI in early 2010. I had 2 small spots / FLAIR of T2 intensity along with some suggestions of atrophy in some areas.
My Neurologist wanted to do a Spinal tap. But it was around this time that I found my LLMD who gave me an IGENEX western blot and I came back positive (after I was negative on the regular lyme tests.)
I've been in treatment for the past 19 months and am 95% back to my old self. The best part..my brain MRI is now NORMAL. My SPECT is still a bit abnormal (although improved) so I continue to treat.
I do not recommend going to an Infectious Disease Doc. I would find an ILADS trained LLMD as fast as you can as they are the only ones who can rule out and properly diagnose / treat Lyme and other tick borne infections (Bartonella, Babesia, Erlichia, etc). I have Bart and Babs too.
Suggest you do a web search for Dr. Burrascano's treatment guidelines and read up on Chronic Lyme Disease. Lymenet and other sites are good resources, in addition to this thread.
Just know that lyme is controversial. Your Neuro obviously doesn't know squat about it. I would get away from them and don't do the Spinal. As Burrascano says...Spinals are to look for OTHER things....NOT Lyme Disease.
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