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    Old 03-13-2007, 03:47 AM   #31
    ryebeach
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    Re: Complications

    Quote:
    Originally Posted by Pearlscale View Post
    Summary: Sat night, chills sweats face numbness, shooting neck pain, nausea, horrible reflux and pain (every 2 hrs taking carafate to numb digestive tract) splitting headache. Then Sun morning 1 1/4 hrs of hard tremors.
    Mon still having relux chest pain, very light tremors. Call to my LLMD told me to go to PCP. By the time I got in to see her, hard tremors, splitting headache she sent me to ER at larger hospital next county over. Thought possible stroke. Cat scan ok. Potassium very low, liver slightly elavated. Had potass drip and oral, morphine, ativan and told it was all because of my potassium. See PCP in 2 days.
    Tues called PCP and told her. She wanted to see me. Potassium ok Wanted me to see neurologist. Set appt for Mon for neuro. Want me to see digestive health spec next week then called back. My liver had jumped from 60's last night to 162 this am. 12 hrs. Shes very concerned. Wants adbom ultrasound and moved digestive spec up to Thur.

    Not sure what is going on. Thought a brain thing now looks like a liver thing.
    Need prayers....Marsha
    hi pearl
    I have had several episodes of what you describe minus the face palsy Mine have started from onset itching and twitching to full blown like yours It is absolutely brutal I don't understand your your resistance to having to take the pain medication When I have had mine if I catch them early I take some liquid benedryl one of my xanax and a pain pill and this reduces the effect so it does not continue into the extreme then I try to sleep it off and usually it is gone within 6 hours What I do to stop this at home sounds more or less what they did for you at the ER the neck pain is really unbearable into my jaw thought Oh Shoot this is it if you know what I mean From what I have read this is sometimes the result of our Lyme not pleasant I know Mine has lasted up to 6 hours headache tremendous hurting in my ears tremors jumping and jerking of legs muscle in legs feels like it is collapsing burning in feet shooting pain in legs Just laying there moaning and not knowing what was next Was going to go to ER a couple of times but with treatment of lyme I believe this may happen from time to time and i find most drs don't know what they are dealing with My son has had a seizure disorder for almost 30 years from post meningitis and a stroke and I see him go through the twitching and jerking part quite often so I guess it doesn't scare me so much and they usually treat him at the ER with Adivan Have you tried the recephin IV yet I know you have been battling this for quite some time Mine is getting much better probaly 70% better than when I was on the oral stuff I have been on it since Mid Dec They upped the pain meds so I have not reached the point you are talking about in three weeks My Aunt in Ct survived this Lyme from the 70's when no one knew much about it and lived to a ripe old age of 78 which is good for my family so I figure we will beat this too
    My Thoughts and prayers are with you and wish you luck
    Keep us posted
    Ryebeach

     
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    Old 03-13-2007, 05:09 AM   #32
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    Re: Complications

    Ryebeach and all my other lymie friends.
    Thanks for the encouragement.

    I can't take pain meds. Doesn't matter what I try it will send my chest into spasms and I mean horrible spasms that lasts for hours. Over the years I have tried many, each one did this. I wish I could take them. Tylenol and advil is all I can take. The baclofen I am on now seems to help some. It is for seizures.

    I tried the IV rounds last year. Due to blood clots, I had to stop the IV and go to orals. My problem is that I can't take much without it affecting my liver. Have to stop and start never quite getting enough in to do the job. Not able to take more than 2 or 3 treatments a week. This last time, had to stop due to high liver functions.

    I was diagnosed last week by the neuro with demylinating disease of cns from lyme disease.

    Found out yesterday that the neurologist did some kind of blood test that checks the muscle damage. Results should have been in the hundreds but mine were in the three hundreds. Also I had a positive ANA test. Every red blood cell test they did was to high. The nurse said the neuro wanted to see me asap. She was going to call and get my MRI set up (insurance has been the hold-up) and call me back.

    I go back to the lyme dr end of this month after they have gotten all these other tests done.

    I'm trying to stay positive, but this is tough.

    Prayers....Marsha

    Last edited by Pearlscale; 03-13-2007 at 05:13 AM.

     
    Old 03-14-2007, 07:35 PM   #33
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    Re: Complications

    Hi Marsha and all,

    Got back from the neuro a couple of hours ago and I was mostly hoping for a solution to my dizziness and immobility. He never did want me to go on the antibiotics for Lyme but admitted that I had tried everything else to figure out the MS so I did it and after being off the IV abx. for 8 months and now off the orals too, I'm worse than before. I talked to my LLMD and he said to take a break for a couple more months and decide what to do and I'm going to kick and claw to get healthy. I think right now I'm fighting allergies and that's been a bother all my life.

    Here's what I propose: Good diet, good stretching, good attitude, GREAT prayers for all of us and lend an ear and a loving spirit to share.

    I'm wanting to hear good news from all and my good news tonight is that I'm not quite as dizzy as I was this morning. Hang tough, my partners in healing!


    Tronni

     
    Old 03-15-2007, 06:50 AM   #34
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    Re: Complications

    Marsha....

    Praying that things start picking back up for you SOON!!



    Tee Dee....

    That's one thing we all had or are having to do ....

    FIGHT HARD ....this is some nasty....stuff!

    Hugs to you both!!!


     
    Old 03-15-2007, 10:11 AM   #35
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    Re: Complications

    Tronni
    What did the neuro say? You proposed 4 things. I agree with 3. The 4th is stretching, can't do that. The way my muscles are hurting, I cannot stretch. If I even to try to stretch when I wake in the morning, they will tie in a knot. It may have something to do with the muscle damage test they did. I will find out more Monday.

    Jojo
    How you doing? It is really hard to hold on right now, but giving up is not an option. So I just hold on tighter and pray harder.

    I did go have an MRI yesterday of my brain. I have it here, but am not sure how to read. I know before the neuro showed me white spots that were lesions. But that was one picture on one large film. This has 12 on one film, so they are small. I do see alot of small white dots. But I won't jump to conclusions. I'll wait until I see Dr Kraft on Monday. I know a positive ANA is a definite sign of autoimmune disease. Mine was positive.

    I ache and every muscle hurts. My tremors have almost stopped. Still have my headache. My lyme Dr knows whats going on, but he is on hold until I get to the bottom of this.

    Has anyone ever had a positive for autoimmune disease with lyme? I think the lyme has caused my immune system to start fighting my own body. But from what I understand, there is no cure, I just have to pray that my immune system will straighten itself out.

    Prayers....Marsha

     
    Old 03-15-2007, 10:36 AM   #36
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    Re: Complications

    Marsha....I just want you to know that my test ALWAYS showed positive on the ANA test...and I AM SOOOO MUCH BETTER! So YES there is hope...

    Remember Lyme is an immatator disease! I had every darn doctor that I went to tell me I had this or that...and what it all boiled down to is that I had Lyme and Chlamydia Pnuemoniae (which I am being treated for now) and Epstein Barr Cytomeglovirus and the usually herpes....SOOOO I am on Valtrex for those now too.

    All I am trying to say is I know you are worried and you feel like POOP! The white matter on your MRI I have heard other lymies having this...think it is all par for the course....

    I am wondering do you think you could of been reinfected here lately? I remember you were doing so well around Christmas. and then Bham you've got those headaches and muscle spasms...BAD again...just wondering about that....

    Hold on tight to that rope...

    So Glad you have your Hubby and family standing by you...that helps a little...

    Let us know how things go for you on Monday....

    Hugs to you!




     
    Old 03-16-2007, 09:01 AM   #37
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    Re: Complications

    You're right about the stretching, Marsha. I used to stretch for several minutes before getting out of bed - I had a small towel on my nightstand that I'd hook over my foot, hold on to and then bend my knee and press against the towel to straighten my leg. That ability has left me and now stretching consists of standing at a counter with my wheelchair behind me and bending my knees and standing back up. I make it sound simple but it's a chore, often causes spasms and I don't do it unless my husband or one of the kids is there. I know you have terrible pain and I truly pray for your getting relief from that.

    The neuro basically said, try to stay (in my case GET)strong and positive because maybe new things for MS and lots of other maladies will come out. We did discuss my lesions from the MRI I had last Aug. and I had lots of lesions - the little white pinhead-sized white dots -but nothing much had changed from the MRI done 2 years before and he counted that as positive. I've also read that maybe most people have brain lesions and maybe they are more common than doctors realize. One more thing to add to our confusion.

    I'm hanging on to the rope right next to you and know how difficult it is. It doesn't help to know that letting go is not an option but I hope it helps to know that there are lots of us hanging on with you and for you, too.

    Jojo, thank you for being there for all of us, also, You're in my prayers and I appreciate your support and kind words.

    With a big gentle hug,

    Tronni

     
    Old 03-16-2007, 06:55 PM   #38
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    Re: Complications

    Jojo
    Thanks for the post. I have done so much research on ms/lyme disease. I know I have not been reinfected. This is the 4th flair of this type. The first was before I ever saw Dr Jemsek for lyme. Each one is worse than before. The last one took about 4-5 months to get over. I know that the Mayo clinic did a study on lesions recently and found spiroketes in some. I also know there are those that believe that clamyadia p can cause lesions/ms. Also virus and trama, among others.

    The neuro I am seeing believes that lyme can cause ms/demylinating disease. I see him Monday. I feel that if I have more lesions, then I either haven't beaten lyme or have and ms is in control. The neuro says he believes dead lyme can cause ms.

    You're always there with encouragement. Thanks.

    Tronni
    I will post to you. I want to ask you some detail questions.

    Prayers....Marsha

    Last edited by Pearlscale; 03-16-2007 at 07:18 PM.

     
    Old 03-17-2007, 05:17 AM   #39
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    Re: Complications

    Tronni
    I started a new thread to ask you questions. Prayers...Marsha

     
    Old 03-17-2007, 11:55 PM   #40
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    Re: Complications

    Quote:
    Originally Posted by Pearlscale View Post
    Ryebeach and all my other lymie friends.
    Thanks for the encouragement.

    I can't take pain meds. Doesn't matter what I try it will send my chest into spasms and I mean horrible spasms that lasts for hours. Over the years I have tried many, each one did this. I wish I could take them. Tylenol and advil is all I can take. The baclofen I am on now seems to help some. It is for seizures.

    I tried the IV rounds last year. Due to blood clots, I had to stop the IV and go to orals. My problem is that I can't take much without it affecting my liver. Have to stop and start never quite getting enough in to do the job. Not able to take more than 2 or 3 treatments a week. This last time, had to stop due to high liver functions.

    I was diagnosed last week by the neuro with demylinating disease of cns from lyme disease.

    Found out yesterday that the neurologist did some kind of blood test that checks the muscle damage. Results should have been in the hundreds but mine were in the three hundreds. Also I had a positive ANA test. Every red blood cell test they did was to high. The nurse said the neuro wanted to see me asap. She was going to call and get my MRI set up (insurance has been the hold-up) and call me back.

    I go back to the lyme dr end of this month after they have gotten all these other tests done.

    I'm trying to stay positive, but this is tough.

    Prayers....Marsha
    Marsha,

    I am not going through half the things you are going through but I do want you to know this. I too had an abnormal ANA test last year. That scared me to death. My liver enzymes were slightly high too. They thought I had an auto immune disorder. I've done two ANA tests since then, one just a few weeks ago and they were negative. Sometimes medications can cause you ANA to be positive/abnormal and sometimes healthy people have abnormal/positive ANA tests. I'm just trying to give you a little hope hun. Hang in there

    Chantel

     
    Old 03-18-2007, 12:01 AM   #41
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    Re: Complications

    Quote:
    Originally Posted by Pearlscale View Post
    Tronni
    What did the neuro say? You proposed 4 things. I agree with 3. The 4th is stretching, can't do that. The way my muscles are hurting, I cannot stretch. If I even to try to stretch when I wake in the morning, they will tie in a knot. It may have something to do with the muscle damage test they did. I will find out more Monday.

    Jojo
    How you doing? It is really hard to hold on right now, but giving up is not an option. So I just hold on tighter and pray harder.

    I did go have an MRI yesterday of my brain. I have it here, but am not sure how to read. I know before the neuro showed me white spots that were lesions. But that was one picture on one large film. This has 12 on one film, so they are small. I do see alot of small white dots. But I won't jump to conclusions. I'll wait until I see Dr Kraft on Monday. I know a positive ANA is a definite sign of autoimmune disease. Mine was positive.

    I ache and every muscle hurts. My tremors have almost stopped. Still have my headache. My lyme Dr knows whats going on, but he is on hold until I get to the bottom of this.

    Has anyone ever had a positive for autoimmune disease with lyme? I think the lyme has caused my immune system to start fighting my own body. But from what I understand, there is no cure, I just have to pray that my immune system will straighten itself out.

    Prayers....Marsha
    Marsha,

    I've been doing vaccine immunization shots. Have you ever heard of it? They give it to people with MS, Chronic Fatigue and Fibro. It is supposed to boost your immune system and help you feel better. It helps with the brain fog too. I've only been doing it for a week so I can't tell you much but the doctor I see has like a 90% success rate with people getting better. Maybe ask about it where you live. I will definitely keep all of you posted on my progress. If I can help someone feel better, I will.

    Hugs,
    Chantel

     
    Old 03-18-2007, 10:05 AM   #42
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    Re: Complications

    Hi Chantel,

    Very interesting about those shots you're taking. I followed Marsha to the new thread that she named "Tee Dee" and tried to answer some of her questions there. You can take a look at that and if possible, can you give us a little more info on those shots?

    Hope they really do the trick for you!

    Hugs and prayers,

    Tronni

     
    Old 03-18-2007, 05:11 PM   #43
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    Re: Complications

    Dear Marsha,

    I pray that you get answers to these questions about what's going on. I can't remember if you ever mentioned it, but have you ever seen a naturopath? I've always wanted to but I just can't handle it right now.

    I was just wondering if there are ways you can increase your immune system's fighting power. I take something called "AG Immune" made by BodyWise International. I aso have a bottle of Ninja Red in my fridge waiting for me to drink it.

    I've been thinking about you a lot lately. Maybe you can investigate ways to put some boxing gloves on your immune cells and kick some butt.

    Immune suppresant drugs? What about nulasta? Can you afford a visit to the Jernigan clinic? What about seeing an M.D. or an herbalist for an immune building protocol?

    Just my thoughts.

    Thinking of you often my friend. Someday you'll be posting fishing stories and making us all jealous!

    Hang in there Marsha. I'm saying prayers for all of us.

    Mickie

    p.s. Maybe you can try different anitbiotic/antiviral cocktails to see if there's an underlying infection that hasn't been detected?

    Last edited by 6Blues; 03-18-2007 at 05:14 PM.

     
    Old 03-18-2007, 07:58 PM   #44
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    Re: Complications

    Mickie
    Maybe tomorrow I'll have some answers. See the neuro again. (I'll have answers just hope they are ones I want to hear) The nurse has already give me some results and I have the MRI films to take.

    I'm still hanging onto the rope with you on one side and Tronni on the other.

    Prayers...Marsha

     
    Old 03-19-2007, 09:03 AM   #45
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    Re: Complications

    Hi Mickie and everyone else on this thread,

    Reading these posts, it occurred to me that we're all going through terrible things right now and that all of us are struggling to hold on. Reading about everyone else's problems, many of them similar to my own, it feels as if there's a guiding force telling us all that we're not alone and that maybe being mindful of that is a tool we can use to hold on tighter. I'm stepping up my prayers and instead of waiting until I'm in bed tonight, after I finish this post I'm going to sip a cup of tea, sit in a window to soak up some healing light and pray for all of us. We can do this. I'll be checking this thread as often as I can and am going to concentrate on this one since most of us have been posting here.

    I'll go to the MicBlues thread and make a note there.

    With much compassion and good wishes for relief,

    Tronni

     
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