Any help leading to dx is much appreciated.
I had read the post about being dx with MS and then getting a second opinion which turned up Lyme. I have been diagnosed with MS based on brain MRI with multiple lesions, peripheral double vision, balance issue, and cognative disfunction. I have talked to folks about both diseases and it seems like symptoms over lap. I'm awaiting results from Lumbar Puncture and MS panel blood work. I fear that these test aren't going to lead to a dx. What are the most definitive test for Lyme? and for those that are familiar with MS - same question.
For Roman12:12- what was it that convinced your second opinion dr. to diagnose Lyme and not MS?
i'm sooooo sorlry that you are this position. when i was there it was a very hard decison to make and a very scary time. but i'm glad i did seek out the second opinion, as MS treatment is exactly the oppositie of what lyme's patients need, that medicine will make anyone suffering with lymes so much worse. i know maureen had that happen to her and she had many problems due to it.
anyway i'm getting of the point. warning..this is probably going to turn long, hope you doin't mind. i have a lot of info that influenced my decison.
um i guess really what mae me and my family search out for a llmd was that i fought lymes once before as a teenager. i was severely ill, missed 2 1/2 years of school, and was hospitalized a few times as well. i had to fight then (1991-late 1992) to get treatment. went through all of Mayo and they wouldn't treat for lymes. must have seen about 35 docs in different specialities and have every possible test done to me. they were ready to commit me and throw away the key. but we finally found a doc who was willing to try treating for lymes even though all of my lymes tests from mayo were negative. and i finally felt some relief. it took me 3 long years of iv's, pulsed, and having relapses to finally be cured - or so i thought in late 1995.
so having gone through that we knew how the med community views lymes and also i knew how it felt to have lymes, and my family knew as well what it looked like. at the time last year when my symptoms rreally began showing up, mainly the vision, headaches, and photphobia and balance/cooridination issues i had no idea that it could be lymes again. that it could be a relapse from my firts lymes.
i had my mri's done, a spinal tap, eeg, ms panel, and about a billion other tests run including 3 lyme ELISA tests (all negative) and the docs were all telling me ms. they were building a strong case for ms, but there was no absolute test that showed MS. the lseisons looked like they could be caused by MS, but they couldn't say for certain. my eeg results were very abnormal, showing that the lesions in the three aresa of my brain had caused delays and damage in fuctioning, suggesting MS. the ms panel was negative, but the said it doesn't always show up especiall if the flare is over. i don't really understand that test still. also my spinal tap was negaitve for both lyme and ms, but agin they explained that away. my opthoneurologist said that when i los my vision and then continued to have vison disturbances it was most likely a bout of optic neuritis, one of the big precursors to MS. so with all this round about evidence they had built up a semi good case for MS. they told me to come back in 3 months, they would rerun the MRI's, do some more scans and blood work, and see if i'd had another flair and then start treatment for MS.
but by this time my symptoms were progressing fast and i didn't want to wait 3 months and get sicker. i was having memory and speech problems, my joint were swelling and red, i was throwing up and lsing weight, i couldn't sleep but was exhausted, and som uch more was spinning out of control. i was scared and so was my family, but i still i needed to be convinced that this was lymes. my family was adamant about it. i think if it had not been for them pushing to aleast see an llmd, i would be living with a diagnosi of MS and recieving the wrong treatment or else i would be dead. i thank god so much for their tenancity. because at that time i had 3 neurologists and my family doc telling me it's not lymes, it's MS. i didn't want to have lymes again. i couldn't see lymes in what i had. it felt different this time. but my family saw it. and they told me, "it won't hurt to at least see the lymes doc. all he can do is say it's not lymes and if it's not then you can start MS treatment." so i agreed, thank god.
so we saw dr crist in MO and he ran the blood tests that saved my life. if you are going to have lymes tests done it is EXTREMELY important to have an accurate lab handle them. most lyme tests are run at clinic facilities using the ELISA titer test and it is only correct i think 64% of the time, and many factors affect the results even more so; how long you've had lymes, what type of lyme's it is, and so on. even worse is the fact that those labs save money buy using cheap lyme antigens to base the test results on, so that is another reason why the tests are so inaccurate and often give false negaitves.
in my opinion and my lllmd's opinion one of the best tests to run is the western blot, the IGg and the IGm, through a lab in california called IgeneX. where so many docs had said i had MS and not lymes, my western blot results both came back screaming lymes to the high heavens. i tested positive for almost every single band there is to be tested for. i promptly sent a polite but "you were wrong" letter to my neurologists with an attached copy of my lymes test results with all the positive bands of the tests highlighted in bright yellow so they couldn't miss them! needless to say i havent' been back to see any of them.
i am definitely not well yet, i've had 4 rounds of iv's and about 7 months of orals, and am set to start a new round of iv's soon - this delay is another story for another thread.......but i am at least 20% better then i was last year at this time. last year i couldn't lift a gallon of milk to save my life, couldn't get out of bed i was too weak, and couldn't stand to be in a room where anyone wasn't whispering or the drapes had all been drawn down tight. i was living on pain meds. it was hell. but i can't imagine how much worse i would have been off if i hadn't taken the time to get a llmd's opinion. i think i probably would've been dead by christmas last year, it was that bad and that scary.
i hope this helped you some what. i don't know whehter you have MS or lymes, but i would really suggest seeing a llmd if you can just for an extra head in the mix. it sounds like lyme to me, based om my experience but i'm not a doc. and i know how terrible MS is, my brother in law has suffered with it for the past 10 years and it breaks m heart to see him in the middle of a flair and how it has changed his life. i really hope you can get the help and info you need and make a informed decision before you go into treatment either way. if you have any more questions or anything let me know, i'm glad to help.
let me know how things turn out and what you decide. i'll be hoping for the best. take care.
"Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12
wow your story sounds like mine...except not as long. I've been to like 15 drs. been out of school for a year. Most dr.s' think im just crazy/or making up symtpoms. Yesterday i had a dr. basiclaly look me in the face and say i was lying about symptoms im just depressed....the nerve of some of these drs. Thats a really moving story tho. That gives me more confidence to keep pursing and not give up. Thanks for sharing. I thought i was the only one that was really suffering. And not being able to have a normal life...*go to school, hang with friends, work, ect*.
To make a long story short. I had and was diagnosed lyme 19 yrs ago. Treated 10 days. CURED!!! Ha..
Then several yrs later fibromyalgia, but not lyme. No way. I was cured, Test neg. Received diability on FM.
Then about 4 yrs ago went to neuro with vision problems. Found 3 white matter lesions on MRI. Told maybe MS. For 2 yrs maybe MS. Then sent to 2nd neuro and he said, probably MS after seeing my records from the first neuro and my MRI. He did want to see if I had any lesions on my spinal cord and since I had neck surgery a few years earlier, I could get the MRIs of my spinal cord. I was to take them at my next visit.
2nd time I saw him, he didn't remember the first time 2 wks earlier. Took a very quick look at the spinal MRI and and told me there was nothing wrong with me. I was just getting older and like his wife looking for problems. Well after he was finished with his put down, I told him to look at his notes from the last visit. He did alot of back pedaling. Told me we'd wait another 6 mo and then retest. That was the last time I saw him.
A friend then convinced me to see a LLMD he was seeing because he knew I had had lyme before. I tested all indeterminates on Igenex, positive for babesia, bartonella, and mycoplasma. They forgot to include erlickia in the test.
You may not have lyme. It may be MS. But check out both thoroughly. Seeing a LLMD is a good idea. Lyme is the great imitator. And so good at hiding. Let us all know what you find out.
I hope and pray you find the right doctor and the right diagnosis.
Last edited by Pearlscale; 08-25-2006 at 08:14 PM.
The following user gives a hug of support to Pearlscale: shiffma64 (11-04-2010)
To all of you that responded, THANK YOU
Wow- the roads you have been on for answers. I'm so glad all of you haven't given up. I guess I'm just starting my road.
I saw my neuro last Thursday. My Lumbar puncture was conducive for MS. I had more than 1 'O-band'. My VEP test was negative for optic neuritis. That's a good thing. So, based on my MRI and LP he says Probable MS, but won't officially diagnose it. He also will not consider medication at this point and won't entertain the idea of Lyme's test. He sent me home with Diet regimen and reduce stress in my life. Yeah, those will help but where is the treatment? He did agree to refer me to UCSF MS clinic for second opinions because I wasn't comfortable with no med treatment. But, I want a second opinion before I jump into meds of any sort.
Question back to all of you-
Having positive MS 'O-bands' and multiple brain lesions, Sould I be comfortable with MS diagnosis? It sounds reasonable to me, but I know 4-5 people with Lyme that are screaming at me about the possibility of Lyme.
I'm in Northern CA with few Neurologist that specialize in either disease. Should I still pursue Lyme test?