Quick Update – Could Not Walk, Wheelchair Soon

23 Mar



Quick Update – Could Not Walk Wheelchair Soon

The last month has been one of the worst for me. I feel like what little progress I made in 2 years has relapsed. My spine and neuro symptoms are getting worse. I will be seeing a new LLNP/GP next week for more MRI’s on my spine and hip. Still a lot of severe pain all over and down my spine so I will be looking for something stronger than Dilaudid and Norco like maybe Fentanyl patches. I have already tried every pain killer known except for Tapentadol which seems just like what I already take. Tired of crying myself to sleep. Some of the pain is non-lyme old injuries.

Tonight I was trying to get up and walk and my brain and eyes were looking forward yet my body would not move or I would walk backwards. It was very strange to have my body and brain not on the same page. I could take steps but very short and my legs were like noodles. I started to slur my speech and talk very slow (which is not unusual). It just seems more frequent now like maybe my spinal stenosis is choking my spine finally, my neuro is worse from lyme or my old lower back injuries are doing damage.

For months now I use the walls and counter tops to hold me up as I walk. I have hyper POTS so I also faint or black out a lot. I am a “fall risk” and I feel a walker is not enough support so I would like a wheelchair. I have been doing my best to avoid a wheelchair but I think it’s time to get one for those bad days. I was already bedridden 2 years ago and could barely walk before starting treatment.

With so many medical issues (fibro, pots, lyme, lupus, spinal stenosis, c-spine herniated discs…etc) it is hard to say if this is 100% lyme related. I do believe that the lyme caused my herniated discs in my c-spine. I know a lot of my neuro issues like turrets twitches in my head, tremors, unsteady balance…are lyme and TBD related.

It’s scary to know that the rest of my life could be in a wheelchair especially if my stenosis and spine get worse but I am still at peace with all my illnesses and I will push on with a smile and continue to support others. It’s not the end of my life, it’s just a new beginning and new challenges. I want you to fight this disease with me and never let it define you or make you want to give up. Keep up the fight fellow warriors and hold your head up high.


– Hope you find a reason to smile each day. Take care for now….





14 Responses to “Quick Update – Could Not Walk, Wheelchair Soon”

  1. Bill March 23, 2013 at 4:56 am #

    You are a brave man and an inspiration to so many of us. While it may sound corny to say, by sharing with others we are all pulling ourselves away from isolation and perhaps this will help to ease our suffering just a tiny bit. Thinking of you as usual…

    • 49erBry March 24, 2013 at 12:13 am #

      Thank you Bill, my Lyme sister Jewels is my inspiration and she has survived death so many times. If she can do so can I is how I feel and when I have a bad day I think of her struggle. I hope you are having a peaceful night. Take care my friend.

  2. Jeff March 23, 2013 at 10:44 am #

    hang in there, i know the pain very well. i spent many hours laying on the floor in the past crying from it as well, but its not as bad anymore although i have no life and few friends. ive had spine tumor removal and neck disc surgery and lumbar fusion all because of the lyme. i can easily fall back into the loss of coordination leg buckling and memory problems without antibiotics and probiotics and antifungals.
    what is your treatment.where are you located?
    ive been on many meds. now on vanco and mepron.
    are you able to get antibiotics?i know when i took pain meds all my symptoms became worse from toxicity and withdrawel when i tried to stop.
    you will get better,it just takes time.i know its not easy but we can all heal from this.take care, Jeff

    • 49erBry March 24, 2013 at 12:21 am #

      I have been on treatment about 2 years and all antibiotics, antimalarials and herbals. I recently just decided to try the homeo route after the candida scare. Right now tonight I am back on clindamycin and minocycline. I am going to try Mepron again soon. I have tried almost all the abx so far. I’m sorry you are going through so much and I hope things will get better for you. Lyme is a disease that once you have it forever it takes each piece of your body with it. Hope you are having a better night. Stay strong.

      • Jeff March 24, 2013 at 12:05 pm #

        Thank you, im really hopeing you will get well soon. i think what has made me the sickest in my heart, mind and body are the doctors that have abandoned me along the way because they were afraid of not knowing what the hell they were doing and even told me they didnt want me to develop a superbug. im dieing from one because of that stop start mutation of bacteria.i live in fear of abandonment by my doctors. how many times they have pushed the dose so high only to make me sicker instead of a gradual increase and stopping at a dose that makes me able to function. its not a kill kill kill kind of thing. its about giving a dose that helps and letting the patient adapt and have good days during the treatment.10 years ive suffered really bad since being dropped in an elevator and having the dormant disease wake up. Docs made me feel so damn alone and without hope for years saying i needed a shrink and physical therapy.well i finally found two shrinks and both are big lyme docs.thats what i needed all along. they know when someone is screwed up from an infection.
        one time years back i was admitted me to the hospital when the burning in my spine eyes and intestines was so bad and they all laughed at me saying how healthy i looked because i was a gym rat for years till this sudden illness. the yale staff tried to get me to admit myself to the mental ward saying we can run test and help you this way by admitting you. yah, like i wanted that on my record so i couldnt get insurance again. lately i see my old infect disease doc on tv channel twelve talking about lyme like he knows what the hell he is talking about. he abandoned me and allowed me to relapse till i couldnt walk at all.he refused to treat me when i was in trouble. there are some real cruel selfish ignorant docs out there. we got to keep fighting and sharing treatment info.
        the homeopathy that you did may have actually helped you but it can be hell for some weeks from it .i hope you will not need a wheel chair and will continue to get well. take care, jeff

  3. Julie Trombley March 23, 2013 at 9:00 pm #

    Could this downward spiral be caused by the herbal treatment you’ve been doing?

    • 49erBry March 24, 2013 at 12:10 am #

      My downward spiral started when I stopped antibiotics unfortunately. I just needed a break but now I see I cannot risk taking one. The vials seemed to work for a bout a week. Since then no herxing.

      • SHERRY SMITH March 24, 2013 at 7:53 pm #

        After reading about your new symptoms, I will pray to Jesus to heal you every day forever . Sherry Hang on he is with you.

      • SHERRY SMITH March 24, 2013 at 7:58 pm #

        I have had Lyme too since 1995. I cry myself to sleep many nites too. May God be with us all and heal us .

      • 49erBry March 25, 2013 at 10:48 pm #

        Thank you and same to you. I am sorry you are suffering. Let’s keep hope alive. take care

  4. Elizabeth L March 28, 2013 at 11:14 pm #

    All those symptoms you described are familiar to me. I had them for three years, of which one year bedridden not walking or waking poorly. The wheel chair is helpful for bad days. But I have to tell you, it is not for the rest of your life. I am fully recovered now. I dont know which treaments you had so far but I hope you are being treated by a Lyme literate MD. Take one day at a time and never loose your faith.

    • 49erBry March 29, 2013 at 12:41 am #

      Thank you. I don’t think it will be for life I won’t let it be. I think it’s my spine and spinal cord. Still need to get some new MRI pics and find out. I am so glad to hear you are fully recovered.

  5. Tina March 29, 2013 at 5:24 am #

    Thank you for your encouraging word. I have these moments as well. I have been dealing with Lyme since 1996. I have had many years of good health, but every new and then relapse when I get lazy about my diet. It’s hard when the costs add up and people don’t believe you. I have been able to have good health through diet and herbal treatments. Here is my blog about what I have been doing. The biggest key for me has been my diet and being extremly strict.i had the Carroll intolerance food test done. The other thing that really works for me is Ubv ozone treatments. Good luck and keep fighting!www.lifewithahintoflyme.blogspot.com

  6. Deborah Taylor October 22, 2017 at 10:01 pm #

    Hello , God Bless You.I have chronic Lyme too. It is heart wrenching that you go through so much. I do too. However, my disease with Lyme has not been addressed yet. It’s because I need to travel for care. Not real far but to Seattle from Olympia. It’s going to happen though. It’s so difficult dealing with numbness and numb hospital staffers. I know you have insurmountable courage though!😃. Man, years ago now my brother in law who suffered a rare lung condition used to have so many issues. I hope someday doctors in emergency room settings will have to be held accountable for their bias and ignorance about Lyme or other diseases. I thought they were trained well?😉. Hay, what I hope you can find are extremely moments and days of calm happiness . I am sorry that you have suffered si greatly. Why don’t those extra smart doctors figure out a way to end the lives of ticks? Oh boy! I think some other bug or frog or bird could possibly be used to combat them altogether. Oh you have hairspray, that works. Have a better night. I’m praying for you. Deborah Taylor

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