Diagnosed with MS with lesions...but could it be lyme?
I am a 25 year-old-female and have been in acceptance of my MS diagnosis (just started on drug/Copaxone treatment), but now I'm thinking that I want to definitely rule out lyme? My symptoms started in early august during an extremely stressful time and they included:
Tingling up and down my legs and groin, tingling lips and tongue and left side of face and dizziness that came in waves. I have tingling in my feet that comes and goes as well. The first nuero I saw did not deal with many MS patients and wanted to diagnose me off of the MRI. The MS specialist I saw after said that my MRI, although it had 19 lesions, did not have the typical/classic look of MS and had me do further more testing. All my other exams came back normal except my spinal tap came back positive for antibodies/one band (I haven't actually seen these results myself).
I had an MRI done in October and these were the findings. Also, I want to note that the specialist mentioned that the MRI report was written up by the radiologist with the assumption that I had MS, as opposed to trying to diagnose me.:
There are approximately 19 white matter lesions involving subcortical and perventricular regions of bilateral hemispheres and left brachium points, which most likely represent demyelination related to known multiple sclerosis. Four of the subcortical white matter lesions at the right parietal, superior right occipital, and left parietal lobes and one right periatrial white matter lesion exhibit contrast enhancement, which most likely represent scute/early subacute demyelination.
No lesions on the spine.
The dizziness has gotten much worse/is constant where it gets a bit scary. I am super fatigued and can sleep 10 hours or longer without a problem. And in the past 3 weeks, I've had horrible ear issues, including pressure in ears, ringing in ears and an EXTREME sensitivity to noise (these ear/hearing issues all started in the past 3-4 weeks),
Please let me know your thoughts I really appreciate it.
Welcome -- sorry to hear about all you are dealing with. No one here is medically trained that I know of (I'm surely not), but we are glad to give you some ideas.
There are a number of posters who have passed through here after an MS diagnosis with the same questions you raise. You might search within in this forum (I think you can do that?) and see what they have said and the thought process they followed.
You seem already aware of the split in the medical community about whether Lyme is the functional equivalent of the sniffles (a few weeks antibiotics and you're good to go) or requires more thoughtful analysis and treatment. Neurologists and infectious disease (ID) docs are particularly found in the 'it's sniffles' category, and the IDSA (Infectious Disease Society of America, the main doc group for infectious diseases) set the diagnostic and treatment standards that all other docs tend to look to ... like if my car has a problem, I will take it to a mechanic and not to a cook to diagnose and fix it.
Unfortunately, the IDSA is controlled at the top by some of the original investigators of Lyme disease (Steere and Wormser being two names you might see in the literature) who have not updated their views of Lyme and its co-infections, altho research has continued over the decades and more has become known.
There is a competing group called ILADS, International Lyme and Associated Disease Society, which is the main group for MDs who view Lyme more seriously. ILADS is scoffed at by the IDSA crowd, and patients of ILADS docs are often not treated very well by the IDSA bunch -- the IDSA docs truly believe the ILADS docs are committing malpractice and want nothing to do with them, which leaves the patients out in the middle. (You will also see the term LLMD used -- it is NOT an official title or degree, and docs generally do NOT call themselves LLMDs, which is short for Lyme Literate MD -- it's shorthand we patients use to denote a doc who thinks Bigger Thoughts about Lyme.)
MS seems to be a common diagnosis made without serious consideration of Lyme, again because Lyme is not viewed as a serious or persistent illness after a couple weeks of antibiotics is given.
Lyme bacteria however have certain characteristics that allow it to persist in the body and evade detection by the immune system, as well as having a very long reproductive cycle ... most bacteria reproduce within a couple of hours for each generation, and it is when reproducing that bacteria are most susceptible to being killed by antibiotics. With Lyme's long repro cycle, however, it take more than a couple of weeks to hit them when they are reproducing and vulnerable. Altho nonLyme docs scoff at this point, the standard treatment for tuberculosis (TB) and leprosy (aka Hansen's disease), which are both caused by slowly reproducing bacteria, is a good 18 *months*. Thus the treatment concept is accepted in mainstream medicine, but is stubbornly not applied to Lyme.
Another factor is that the Lyme ticks often (maybe half the time) carry other diseases that need separate testing and treatment from Lyme, including bartonella, babesiosis (like malaria), ehrlichiosis, and some others. NonLyme docs are often not aware or not interested in diagnosing or recognizing infection with these; I don't know why, but have had the experience myself of being dismissed without treatment even in the face of positive, document infection.
Neurologists naturally look to the spinal fluid and MRIs as aids in diagnosis, but Lyme is difficult to detect with these methods. Therefore, as the old saying goes: absence of evidence is not evidence of absence. You can be infected, but the test is not designed to find what you have.
Docs often start with the Western blot and ELISA tests, which are NOT very accurate, but nonLyme docs treat them as the last word. A Lyme specialist will know that the tests are lousy and factor that in with your history and symptoms. Lyme docs also use a test which looks in your blood for DNA bits from the Lyme bacteria (called a PCR test), which is direct evidence of infection; the W.blot and ELISA tests look instead for your immune system's reaction to Lyme bacteria, and the tests often miss seeing that immune reaction for several reasons.
Long story short, I would in your situation find a Lyme specialist for a consultation. The worst you will find out is that you do NOT have Lyme, and then you can go back to dealing with the other docs and their diagnoses.
In the meantime, be aware that nonLyme docs may prescribe steroids (like prednisone) to suppress your immune system, because as I understand it, MS is your immune system attacking your own body. Lyme is the opposite: it is bacteria attacking your body, and suppressing your immune system is the LAST thing that should be done.
Finding a Lyme doc can be tricky, because in some areas they can't practice because IDSA docs have a stranglehold on the state and local medical boards and won't tolerate a doc who thinks bigger thoughts. You appear to be in California, which is good news, bec. docs are protected here and can practice as they see fit. There is a California Lyme Disease Association (CALDA) with a website that might give you some leads to a doc near you; some people also travel to No.Calif. to see docs up here, but it's a hassle. Also try searching
LLMD Los Angeles
and see what you get --
Keep your guard up, there are some quacks out there, but also excellent docs. I'm living proof of that.
Let us know how we can help -- stay in touch! Best wishes --
PS if I didn't say above, ILADS has a website at ILADS [dot] org. Lots of interesting stuff, including several documents called 'treatment guidelines', written largely for MDs, but very accessible to those interested. This will give you an idea of an LLMD's worldview. Not all LLMDs agree with each other or with ILADS, but that's a good thing, because this is cutting-edge medicine, and we don't need more medical orthodoxy getting in our way.
Don't get bogged down by the guidelines etc., but know that they are there when you feel like reading up on some aspect or hunting down a symptom you are having. Lyme (particularly in combination with its coinfections) is different in everyone and different in each of us over time -- so don't be dismayed if your symptoms don't exactly fit. Lyme is a tricky beast, that's for sure.
Thank you for the advice! The more I think about it, the more I think that lyme may be a possibility.
I haven't had classic MS symptoms that remit (I went in because of tingling and dizziness). They've been fairly constant and it was all of the ear issues that I'm having now that got me thinking about Lyme. I went to an ENT who thought that my symptoms sounded a bit like Meniere's (I've been having ringing and pressure in both ears, along with sensitivity to sound) so he put me on a steroid (Prednisone) and the symptoms all got worse and my dizziness got MUCH worse.
Anyway, the neuro who diagnosed me with MS didn't really have any idea when I told about the ear issues, but I am seeing a MS specialist at USC at the end of the month. I am hoping that s/he can take a look at everything and give me her thoughts, and I'm going to mention lyme and how I'd like more testing done.
Can anyone suggest any LLMDs in the Los Angeles area? Should I just wait to see what the specialist says before seeking out a LLMD?
Good, glad to hear you are following up independently.
The fragmentation of medicine into specialities as well as the willful blindness of the medical profession as a whole when it comes to Lyme are significant barriers to be dealt with in finding diagnosis and treatment for whatever is ailing you.
I always was open and honest with all my docs about my other physical ailments and history, so they would have a complete picture, as only makes sense ... until I got Lyme and learned the hard way that docs who don't believe in Lyme as anything serious can have a seriously negative reaction when the disease is even mentioned to them. By all means, tell the MS doc, but watch carefully for her response, both verbal and facial and physical. It's a real study in body language: often a slight sneer, as though a bad smell had just entered the room; often a physical retreat, as in backing up a step or two (hard to do in a small examination room, but they manage); frequently a leaning back into the chair, as a form of withdrawal; and almost always, the 'dead eye', where the skeptical look could kill like a laser.
After any of those reactions, the docs displaying them made clear they did not wish to see me again. Actual comment: "Call my office in three weeks and leave a message that you are fine."
Neuros are some of the staunchest Lyme deniers out there, and MS specialists are neuros. By all means, see the neuro, have the conversation, but be braced for a shutdown. You say you are going to mention Lyme and how you'd like more testing done. That's when the doc starts showing you to the door. I'd put money on it.
But you have to try, and you may find a miracle: a neuro who doesn't blow off Lyme and also does not reject you as a nut case. I'm not trying to discourage you or bring you down, just relating the experience of many of us here.
I don't believe in concealing anything about my medical history and situation from any of my docs, but wanted to warn you of the reaction you may get. There is a recent post on this site by poster "drsdonthelp" about her experience when she went to a nonLLMD specifically for an evaluation of her possible allergy to penicillin. The nonLLMD went off the deep end -- it's worth reading before you go to the doc.
So you may tell the new neuro what testing you'd like done, but chances are she won't bite. And most especially she likely won't test through IGeneX or other labs that have something other than the standard junky tests, and if you get her to order the tests, she may well not know how to read them or prescribe according to what an LLMD would do.
There is a very interesting recent post at a weblog called LymeMD comparing and contrasting the different Lyme tests and what the issues are. The author is an MD who specializes in Lyme; he rambles a bit but is always interesting for insight into Lyme.
Not trying to discourage you, but just to educate you about the lack of respect and understanding nonLLMDs have for LLMDs and for Mother Nature's tricks.
Let us know how you do -- hoping for the best for you! Hang in there.
PS about finding an LLMD in Los Angeles ... meant to say:
I'm not in that part of the state and don't know of anyone to recommend in So Calif.
Try the ILADS website for a referral.
Also, the website LymeDisease [dot] org has a link to a national referral website to find an LLMD. LymeDisease [dot] org is the new name for what used to be the California Lyme Disease Association, but don't know how tied they are to California-based information.
I don't know what part of So Calif you are in, but you may hear about a doc in Thousand Oaks (on the 101, southern edge of Ventura County, inland from Malibu) named Trevor Marshall. I read up on his methods several years ago, and he seems very fringe to me. As skeptical as I am of mainstream medicine, and as aware as I have become about Lyme being on the cutting edge of medicine, Marshall's methods and approaches still seem a bit far out there to me. I won't go into them here, there's plenty online if you are interested, but it seems very cult-like. I believe his theory has to do with breaking the chain of chemical reactions the Lyme bacteria need to reproduce, and part of that approach is total sun avoidance for a long period of time (a year or more? I forget now) as well as taking a medication called Benecol (sp?). I have not been able to sort out the science behind the method, and would not go there without more understanding of it.
That said, there are doubtless other MDs in So Calif who are more along the lines of mainstream ILADS approaches, meaning primarily antibiotics in various combinations over a fairly long period of time. The first issue is whether you have Lyme and/or other diseases carried by the same ticks. LLMDs use different tests from LLMDs and also know to test for other possible infections based on your symptoms. Sorry if I am repeating what's posted above, including what I may have posted but forgot I did. :)
Lyme is confusing for patients and docs alike, but some of the docs don't know they are confused. Therein lies the problem.
Hang in there, wear your skeptical hat, let us know if we can help. Oh, and be prepared to be scoffed at by nonLLMDs -- that's part of the drill. But it doesn't mean you're crazy or nuts ... it means modern medicine has a really big ego that gets in the way.
Take care -- you sound well equipped to deal with the situation, let us know how we can help.
You definitely need to get checked out for Lyme. 19 lesions is a high number for someone who recently developed MS-like symptoms. When my neuro ordered my brain MRI, he said he'd be surprised if I had MS as I didn't really fit the profile, and that if I did have MS, I'd probably only had 1 or 2 lesions. Well, I have 20! But, they were not brighter with contrast, as they should be for an MS diagnosis. My neuro did a lumbar puncture looking for signs of MS, Sarcoid, and cancer, and then added in a Lyme test when I requested it. He knew nothing about Lyme, despite the fact that nearly all my symptoms are neurological.
The bad ringing in your ears and noise intolerance do not sound like MS at all, but are consistent with Lyme. I have had both as well. I kept thinking that mainstream doctors would diagnose me, but they didn't. After 12 doctors, I finally went to an LLMD where I was diagnosed and have begun treatment. I'm already feeling better, which is the first time I've had any improvement in over 15 months of downhill slide.
Oh, yeah, and I really went downhill fast after I got a shot of prednisone and then a 4-day oral prescription. It was for presumed 'asthma' (I have noticeable shortness of breath and I often struggle to take a satisfying breath.) Steroids are a disaster for Lyme patients, and that fact that your symptoms noticeably worsened after steriods is a major red flag for Lyme.
Hope you get a diagnosis soon! Don't be discouraged if a doctor tells you you don't have Lyme. Find another one! I tested negative twice before I got tested by IGeneX. I was CDC negative, but IGeneX ruled me positive. Ultimately, it's a clinical diagnosis, which is why you need to see someone who knows Lyme well. Good luck!
Thank you for the comment. I am eager for my appointment with the MS specialist to see what she has to say. Yes, there have been so many small variables that have me doubting MS at this point.
After the 5 days on Prednisone, I could barely get out of bed because I was so dizzy and my symptoms but I started feeling better a few days later.
Some of my other symptoms/new developments include:
twitching, anxiety, weakness/tingling on the left side of my face (most of my symptoms are on the left side), brain fog, etc.
What I have noticed, which I am not sure if this is consistent with anything, is that my symptoms seem to get worse when I eat something high in sugar, like when I add sugar to my coffee or when I eat dessert. Does that make any sense to anyone?
I just saw an MS doc last week just so I could say an expert confirms that I don't have MS. She was kind and listened well, but I could tell she doubted the Lyme diagnosis I got from my LLMD. She wants me to see an in house rheumatologist and an ID doc. I've decided not to see either one. I am confident I have Lyme and I cannot see anything good coming out of an appointment with either of them. I am not CDC positive on the Western Blot, and even if they did agree I have Lyme they would offer me 3-4 weeks of antibiotics. I've had this for 6 years and the only hope I have to be cured is long term antibiotics from my LLMD.
After 9 mo and a MS DX with treatment I still feel its lymes? I have been to 3 nuros all said lessions on brain and symps lead to ms Unfurtunatly I went to UOFC inchicago and hooked up with the guy who developed Betaseron, guess what heput me on! Asked about lymes and he gave me a look ? In anycase I have been getting test done at I genex they spoilked several so I have to take again test 865 said it was hi nitrates? had a simular test done locally and all neg for infection soI ordered the CD57 I recived a alert thatmy levels are low like 20 and the other was 1 is this test significant? the nuro asked whos;s the doc that ordered it I said your talking to him, I think he was a little takin back that I was able to order my own test? Have several lessions white matter in brain non on spine? he wants another mri of the spine, he did order me some doxy to see if it helps thats more than the other6 dx would do. I was bittenserverl times over the past 10 yr's never thought much of it till my symptoms Dixzy off balance trouble walking brain fog all the classic MS and lymes symp I am anavid hunter gatherer and had been bit many times, but these guys only want the money DX.
But I just saw, on Igenex web site, about the CD57:
" While the test may not be 100% specific for Lyme
disease, it does appear useful for monitoring patients with chronic, persistent Lyme disease who are receiving immune supplements."
I don't know what immune supplements means but if it means the Betaseron that you're taking, if you are, then there might be a good reason for doing the CD 57.
About Betaseron----- are you saying you're taking that medicine? It a pretty hefty drug and I hope you bypass all the side effects.
What test, from Igenex,----- You said #865---high nitrates? Can you explain, please?
It certainly sounds as if you might have Lyme disease. I hope you continue to pursue that.
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