western blot was negative

Discussion in 'The Watercooler' started by Jena, Apr 30, 2011.

  1. Jena

    Jena New Member


    so i figured i'd finish sharing my supposed lyme disease tale. the second round of testing the western blot came back negative. unfortuntely. was kinda hoping that was it.

    spoke to the dr. and the hospital. they said alot of times the first round of blood tests come back positive because their sooo sensitive, yet thats why they do the second round of tests to make sure and confirm.

    long story short that isnt' it. so i'm off to neurologist on friday this coming week, for the ms possibility.

    funny to say too bad i isnt' lyme, right? lol. its just that you can take medication for. anyway neuro guy came recommended. i wasn't going to go, i figured alot of bad junk going ondidnt' want to process any new diagnosis's yet thought better of it. figured it's time.

    let you know what neuro guy says :)
  2. InsaneCdn

    InsaneCdn Well-Known Member


    "I complained that I had no shoes, until I met a man who had no feet."

    Can't imagine having this hanging over your head, with all the other stuff going on. Yet... it could be me next - or any one of us. Biggest thing is to not get stressed out... (hahahahahahahahaha!!!)

    Seriously - thoughts go your way!
  3. TerryJ2

    TerryJ2 Well-Known Member

    Well, all you can do is test, rule out, test, rule out, until you figure out something.
    So sorry you're hurting.
  4. Jena

    Jena New Member

    past few days i've actually been ok. whatever it is went into total complete remission....... it's starting to come back tonight. yet i had a few days where i just totally felt like me. which was nice.... :)

    i'm not really that worried, we've ruled out alot of stuff, not that much left now but the ms. took care of the circulatory issue i was having also by taking some natural stuff for the most part. hey if it's ms, ppl live very long very productive lives with it. yes there are some in wheelchairs and that is very sad yet there are many who are very active. we have a mom here who has it actually....
  5. TerryJ2

    TerryJ2 Well-Known Member

    Wow, remission? That's neat. If only you knew why and could duplicate that ...
  6. Marguerite

    Marguerite Active Member

    Jena, I do understand wanting it to be something identifiable and treatable. But I am very glad for you that Lyme was ruled out.

    I've had similar symptoms for 27 years now, and I still have no label that all doctors agree on. But it hasn't stopped me treating the symptoms and managing my condition. I also have relapses and remissions, although I spent many years with the condition turning chronic.

    I'm not saying you will have decades of tis - hopefully you will begin to recover fully soon.

    A medical conference I went to once, had a specialist in emergency medicine speaking. He said that most of the time, patients came into the ER with life-threatening conditions which were not identifiable, but certainly required immediate intervention to save lives. And the people were admitted, treated and eventually discharged without ever having a confirmed diagnosis. These people had been treated and were better. While it might have helped to have a label, it wouldn't necessarily have changed the outcome.

    From the patient's perspective this is not satisfactory. But it can be a comfort to know that treatment and medical supervision can continue, often effectively, while you continue to look for explanations.

  7. Jena

    Jena New Member


    they never tested you for ms?? if you have vision issues, extremities that get freezing cold, burning in legs, and severe joint pain, dropped foot loss balance...... marg you should get tested. there is a protocol now for ms that can help slow down the disease. i won't manage it with medications...... doctor gave me stuff for the joint junk, there's nothing for the vision or days i peel myself out of bed lol. i take alot of herbal stuff and vitamins that help somewhat.

    we'll c i just dont' want the mri. the thought of being contained in the tunnel is freaking me out...... umm i'm claustrophobic. or used to be. i used to fear flying yet i beat that recently on my own, i tackled heigh issue........... yet the tunnel UGH. 30min in there also!!
  8. Marguerite

    Marguerite Active Member

    My neurologist keeps saying, "I'm sure this is MS..." but the tests are always negative. No vision issues either. But otherwise, it resembles MS.

    I don't like the MRI tunnel either, but I defeated it with logic. I analysed it thoroughly. They can't risk patients not being in perfect condition in the tunnel, so there is absolutely no way you will be suffering from any genuine confinement. For example, part of the fear of small spaces is, not being able to breathe. But when you're in the tunnel they pump air through so much that there is a constant breeze on your face. Plus they have it miked in; you can yell for help if you find it too much. I find if I close my eyes and visualise myself feeling the breeze on my face while standing on the top of a mountain overlooking the ocean, I can manage. I work on visualisation, I practice it over the week before the MRI, and it really helps. My first MRI I was told to bring a tape for me to listen to. I brought in a radio play I like, but the triphammer of the MRI machine drowned it out. I could hear the words and phrases but only dimly. But I know the play so well, I was mentally reciting the lines along with it. It did help.

    The tunnel can't hurt you. It is made of one solid piece of rigid plastic so there is no way it could collapse on you. In fact, if there was a major earthquake or whatever while you were in the tunnel, you would be safer in there than anywhere else. And as I said - the ventilation is brilliant. See, the tunnel is not a blind ended thing, it is an open-ended tube. And if it's looking at your spinal chord as well as your brain, it will move you through further, so your head is likely to be out the other side.

    Another thing you can do is visualise the machine studying your body. Visualise the images building up, slice by slice. Mentally put yourself out with the technicians, studying the screen.

    All sorts of mental tricks can help you cope. But I find meditation/visualisation can work brilliantly. It takes practice, but it really is useful. I've had to have bone scans too. Not quite as confining as MRI, but I had to lie motionless for a lot longer and there is still a ring sort of thing that passes over and around your body. Again, visualisation helped me relax physically and put my mind elsewhere during the test.

    You can also use distraction - try to mentally inventory your pantry. Or compose a crossword. Or a series of haiku.

  9. Jena

    Jena New Member


    so the doctor doesn't feel that you should start on the drug regimen? n vision issues are good. i stay calm through them yet it's a bit rough if i'm driving with difficult child.

    good tips on the tunnel......... i'm giong to have difficult child in there with-me she has to come ofcourse. i'll probably be more worried about her while i'm in there. thing is with ms i've come to learn even if you dont' have lesions you still have it. there is no true test to determine if you have it. it's more of a ruling out thing.
  10. DammitJanet

    DammitJanet Well-Known Member Staff Member

    They thought for awhile I had MS too but ruled it out when no legions were found when they did the MRI's when I had the meningitis. Before that I simply couldnt do the MRI's at all because of severe claustrophobia.I have attempted both the open and closed MRI even with enough benzo's in me that I shouldnt have been able to walk but I couldnt handle them.

    I, like Marg, do use medication to handle what is going on with me. I couldnt even have any form of quality of life without it. This certainly isnt what I wanted and I have done everything I could to keep myself on as low a dose of pain medication as I can be for as long as I can be because I know this is a life long condition. This means I have had surgery, had multiple consults with an ortho to have shots of this gunk into my knees to replace cartilage, had cortisone shots in so many places, and taken all kinds of medications but this hasnt meant that I could put off pain medications forever. I am now going downhill on a very fast pace. Not real sure why. Suddenly lots of my joints have started to act up.

    I really hope you dont have something bad and that it is treated easily. I honestly wouldnt wish what I am going through on my worst enemy. My last 15 years have been hell. I havent been in good shape for over 20 years but I really got bad 15 years ago when I was in a car accident. If I had known then how hurt I actually would end up being, I certainly wouldnt have settled...lol.
  11. Marguerite

    Marguerite Active Member

    Even though the results are negative, MS is my (cautious) working hypothesis. It is linked to my immune system in that whenever I am sufficiently exposed to a viral illness, I get a flare-up, especially in pain.

    Janet, I have some possibly encouraging news for you - I have tried, over the years, to cut my pain medications back with minimal success. When I was on prednisone two years ago I was able to cut back from 140 mg to 100 mg, but as soon as I went off prednisone my pain increased and I had to go back up, to 120 mg. But whenever I notice pain not so bad, I cut back.

    What tips me off - when I'm late taking my pain medications (it's a single daily dose, sustained-release) and I don't get reminded by pain to take my medications.

    When I lost weight, I found my pain levels also eased but not immediately. I'm not sure if there is a link. I had lost a lot of weight then i was put on prednisone and I began to gain again.

    Now, over Christmas I was able to cut back to 100 mg. Wahoo! Then when I saw the pain specialist in early March, I told him I was planning on trying to cut back further - a lower dose than I had taken for years. That same day I was late taking my pain medications and was not reminded by pain, so I started the next day - 80 mg. of course, pain was a bit worse but I managed breakthrough pain with an increase in less-strong medications. Over the next few weeks, I cut back on the lighter medications and once I was off those too, I cut back again on the strong stuff. I've done this over the last three months - I had my three monthly appointment with the pain specialist a few days ago and was able to tell him that I am now down to 50 mg a day. That's a lower dose than I was started on, way back 15 years ago.

    I'm not telling you to do this as well - I have tried over the years and not been able to. But it's working for me now, who knows why. The pain specialist was delighted but agreed with me - I may not be able to cut it out completely, because I AM still in pain. But any reduction is a good thing.

    I currently have a cold, so the viral attack has triggered an increase in pain. But I just upped my dose by 10 mg for one day, then went back to 50 mg a day.

    My prescribed capsules contain 100 mg. Cutting back has meant opening up the capsules very carefully, and dividing the contents between two empty capsules. Ironically I feel more like a junkie while doing this, than when I was taking 140 mg a day! When I drove sis-ini-law and mother in law to the airport I had to take my medications, and was having to break up my capsule, in public, while trying to use mother in law's walking frame as a bench. ONly mother in law decided to wander off, leaving me alone in the airport terminal with raw opiates being juggled from hand to hand! And on Saturday as I headed out to my meeting, I left early because I knew the rain had flooded the roads and it was going to be a tricky drive. But I was late taking my medications (an indication I can begin cutting back below 50 mg). I stopped on te side of the road to split my capsule. But I fumbled, and 50 mg of tiny white beads fell all over me, the floor, the seat... and I didn't want to lose any, it's very hard to get the dose right if I lose some. So I carefully began to pick up every single little bead. I finally got them off my scarf, swept together the beads on the car seat, then very cautiously got out of the car to begin sweeping them up off the floor of the car, which was wet, of course (from my wet shoes). Just as I was bending over through the open car door, the heavens opened. A massive torrential downpour began in seconds, and by the time I got back into the cr with the door shut, I was soaked. I had to sit there and wait for it to stop before I could go back to what I was doing. I did finally get it all picked up, but I was late for my meeting.

    Next time I get my prescription, I'm asking for 50 mg capsules. I didn't last time, because I am nervous, worried I might have to suddenly increase my pain medications again and would find myself caught short.

    The point of my long saga - even after being on this for 15+ years, with dosage increasing, if you take this purely to manage pain and you're careful to not eliminate your pain entirely, you CAN reduce the dose, once your pain begins to lift.

    My main worry now - my GP has suddenly begun treating me as if I am a recovering addict, and I am not. I do accept that I am habituated to the medications with a built up tolerance, but cutting back when I ca is eliminating that. But my GP is talking about how wonderful it will be to get me off these medications, and she didn't want to hear when I said that I am still in pain, I may need to stay on these medications at some level for the pain, and it does NOT mean I have been taking too much all these years. It just means what it is - I can cut back now. And I am glad. Don't second-guess or get critical.
    The problem with her thinking I'm a recovering addict - it means other prescriptions I need OCCASIONALLY, such as Valium (for muscle spasms, mostly at night and not that often) she is very reluctant to prescribe. I hate having to argue for medications I've had no trouble getting in the past. I rarely take Valium, I usually have to throw away some of the pack when it date-expires.

    But anyway - have hope. I was always told, and now am living it, that if you take strong pain medication purely for pain, you do not get addicted.

  12. Jena

    Jena New Member

    Janet yes me too with the mri..... i have some really old xanax not sure if it'll even work. yet i'm bringing that as well. we'll c what he says. did they do the other tests on you? they can do some other junk that isn't the mri to get closer to the answer, which may help alleviate your discomfort. that's the whole thing there are medications to decrease the disease if that's what you have.

    i don't take anything for pain besides aspirin when it gets really uncomfortable. the leg twitches at night, burning legs and ice cold feet are annoying. yet i am tryiing to get used to it. i just keep pushing each time it hurts and work thru it, or try to. like even gardening this weekend, i can only go for so long and than i'm like ok time to get up walk stretch i'm like an old woman.

    i wasnt' going to go this week, the cost as well as enough bad junk going on here, yet i thought time to just nip it in the butt and handle it.

    Marg you should try some herbal remedies and vitamins to help. if it is ms it can mess with your circulatory system also. i found this new thing for circulation it's called weird name i know Lovely Legs... it's Diosin and it adds oxygen to your blood helps open the blood vessels etc. i've added in alot of vegetables with high antioxidants also spinach, i eat blackberries and blueberries.

    yoga is very helpful for the pain. Janet i have no clue if you would ever even attempt it yet a beginners tape or one that is especially for those in pain with issues etc. can be really helpful. it's all due to the positions it has to put your body in the blood flow is able to get to different parts it normally doesnt. google the benfits of yoga you'll see what i mean.

    to me it's just a diagnosis, i already have all the junk. getting that will be helpful because it'll help me know how to treat it better. i hope i dont' flake on the mri though. difficult child couldnt handle her's it's sooo loud. i got more freaked by the closed door to the mri room than the tunnel. lol
  13. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Marg...I am on a very low dose of pain medications now. I got on methadone and they put me on a very low dose but I dont know if it is working as well now as it was in the beginning but that is just the knee joints to be honest and Im not sure if anything is going to touch the knees. I probably cant medicate that pain down enough and still be awake...lol.