tingling getting worse

Discussion in 'Lyme Disease Archives' started by nyssagirl, Sep 16, 2008.

  1. nyssagirl

    nyssagirl New Member

    I have had tingling in my let hand and arm for years, but lately it is getting much worse. I have a wrist support that helps with it sometimes. I just wondered if anyone has found anything that helps. It has been so bad lately, it gets on my nerves so bad I feel like I could scream.
    Also have been reading a lot of posts from people who have had a multitude of sinus infections over the years, as I have. I have taken so many antibiotics for those infections.
    I have lyme and am not on any treatment now. It got so expensive I just gave up on it. I have had it for many years and didn't know what it was until a couple of years ago. I was diagnosed with FMS in the 80's. Then tested positive for Lyme later.
    Hugs to all of you who are out there suffering, it is good to know that we are not in this alone, so this site is a blessing.
    Lynda
  2. buttercakes

    buttercakes New Member

    Have you ever had an EMG test? I was having the same numbness, tingling & pain in both arms & hands.

    I went to a Neuroligist had an EMG done, And found out I have Neuropathy in both hands and arms.
    He believes my Lyme Disease is the cause. How long did you
    treat your Lyme before you stopped treatment? Sandie
  3. nyssagirl

    nyssagirl New Member

    Thank you for your reply, Sandie,
    No I haven't had an EMG and haven't heard of neuropathy. Were they able to do anything to help you with it?
    I was on and off antibiotics that made me dreadfully ill for probably a couple of years. I took the shots for as many months as I could afford. I wasn't really seeing any improvement. I really think I have had it so long that the treatment wasn't doing any good.
    Are you on treatment?
    Lynda
  4. buttercakes

    buttercakes New Member

    Yes, I am treating my Lyme, its been 8 months of non stop Abxs with some improvment.

    I still have a lot of ups and downs. If you google Neuropathy there are a ton of sites to choose from, with good info.

    If you go see a Neurologist he or she can run test to see if you have Neuropathy. I take Neurontin to control the pain.
    Do you by any chance, have neck pain? Sandie
  5. victoria

    victoria New Member

    has had neuropathies in both hands/arms, Carpal tunnel, etc... and legs if he stood too long. Over the long haul these symptoms have gotten better, but took a long time. Durrently they've been returning as he's been off abx, he needs to chelate heavy metals and some other things... so not sure what will be next.

    But yes, it's definitely a part of Lyme & Co. (Lyme & Co-Infections).

  6. nyssagirl

    nyssagirl New Member

    I don't have what you call neck pain, but can't lay on my right side for any length of time at all, because my neck feels like it is out of place.
    I thought this probably had to do with the lyme, thanks for helping me out on that.
    I have taken neurontin before. I still have some. Maybe I will try it again and see if it helps. It is worth a try. I am on Ultraset now, but maybe I could switch over for a couple of days and see.
    Lynda
  7. buttercakes

    buttercakes New Member

    I also see a chiropractor, that gives me the most relief, but it is only temporary relief.
    Sandie
    [This Message was Edited on 09/17/2008]


    Victoria, Did your son have an EMG? just curious.
    Sandie
    [This Message was Edited on 09/17/2008]
    [This Message was Edited on 09/17/2008]
  8. nyssagirl

    nyssagirl New Member

    I have tried a chiropractor, but when he works on me it makes me worse, I can barely stand for anyone to touch my left side. I am glad that it helps you, though, that is great!
    I layed down this afternoon and took a nap and got some rest and feel like I can keep going again. One day at a time...I have to keep remembering that.
    I went to physical therapy for a while. It took the therapist a long time to get me better and then it didn't last..so I gave that up. It did help for a while, I am thinking of trying that again. I just dread driving in to Bend (34 miles) one way twice a week to get it done. It is on my mind, though.
    Lynda
  9. victoria

    victoria New Member

    no, other than a myriad of blood tests and a full stress test when he got an abnormal EKG after he felt his heart was acting strangely, nothing else.

    BTW, between the 1st EKG (that was abnormal) and the subsequent stress test, he loaded up on magnesium, which lyme loves apparently... and the stress test came out totally normal TG 36 hours later. Actually he felt better within hours of taking a high dose.

    The abx protocols really helped to lessen his neuropathies... they're just not totally gone and keep reversing if he doesn't stay on abx, which he can't do right now. Not sure what's going to be next, hoping the chelation will help in some way.

    all the best,
    Victoria
  10. buttercakes

    buttercakes New Member

    Lynda, Sorry you cant get any relief, I just hope I can continue to get the temporary relief with my chiropractor.
    Have you tried laying on a heating pad? That helps too.


    Victoria, That is very interesting. I know your son has been through H###. Why cant he take Abxs right now?
    Sandie
  11. nyssagirl

    nyssagirl New Member

    Sandie, I got up feeling pretty good this morning. I slept well lastnight, that really helps! My heating pad is my best friend. Sometimes I alternate with ice. I have a tens machine which sometimes helps also. I have some pain patches, I have tried to use so many times, and they break me out and make my skin itch. Instead of taking the Ultracet, I got up and took a neurontin this morning, to see if it would make a difference in my day. Hope you have a good day.....knowing that we are not alone in this helps me.
    Victoria, I am so sorry your son is having to go through all of what he is dealing with. It must really be rough for a kid to deal with, and equally as hard for you, trying to figure out what to do next for him. Doesn't seem fair.
    Good thought go out to the both of you today.
    Lynda
  12. buttercakes

    buttercakes New Member

    I'm glad your having a good day! I love my good days, when ever I have one, I try to get out and do something constuctive, or just fun. My heating pad is my best friend too. Lynda, If you dont mind me asking, how long did you try treating your Lyme? and what Abxs did you take? This disease is harder to get over then I thought, I have been on Abxs 8 months, but still have alot of fatigue and pain issues. So far, I have not talked to anyone who feels they are cured, have you? Sandie
    [This Message was Edited on 09/18/2008]
  13. nyssagirl

    nyssagirl New Member

    Hi SandieI don't mind you asking at all. But....I can't remember what kind of antibiotics I was on. Steve Harris in California, a LLMD, put me on two. I got very sick and he adjusted them a number of times. Then I got so I was herxing so bad, he sent me to Tigard to a naturopath who tried me on two shots of stong antibiotics. I took them for quite a while, but didn't see any improvemnt. The shots didn't make me sick like the pills did, but I had to pay out of pocket, which was a killer. I was probably on treatment for a year and a half.
    No, I haven't heard of anyone that has been cured. It was my understanding, that you don't get cured from Lyme. Some people that I have read about do get better, though.
    I have times when I feel pretty good and then go downhill for a while and then if it gets bad, like it has been now for about three weeks, I start getting worried that I will stay this way. I have to keep remembering that it is an "attack" as I call them, and that it won't last forever.
    I am on antidepressants, but I really get depressed when this happens. I haven't had any anxiety attacks for a long time and that I am so thankful for!! I have medication for that in case.
    Have you dealt with depression and anxiety also?
    Lynda
  14. victoria

    victoria New Member

    Thanks. He can't take abx right now as he need to chelate LOT of heavy metal - where he got them all we have no idea as our profiles came up differently and we've lived in the same house since just before he was born! He's now 21 and yes it is rough when you're young...

    Anyway, he's pulsed abx for lyme, bartonella, & babesia, but when off too long, symptoms return slowly but surely. Trying to look into alternatives to maybe pulse in between abx, not sure what to do. But for now he's chelating every other day and using the MMS in between.

    I do believe the infections stay in the body, otherwise why would there be an obvious herx?! But as to how to get rid of them when they have so many varieties within themselves, plus seems like there's many other opportunistic infections both bacterial and viral... it feels like a maze.

    all the best,
    Victoria



  15. nyssagirl

    nyssagirl New Member

    What a mystery about the metals. You are right, it does seem like a maze, that is why I haven't been doing anything but taking B12 shots and trying to stay away from sugar and eating sprouted grain bread, etc. I just felt like I was going around in circles all the time. I have had my condition for so long and have been to so many Dr's and been so disapointed and treated like a mental case so many times, that I just try to get along the best I can. I am 63,though, not 21, that makes a huge difference.
    I respect you for trying to figure it all out, it can't be easy. You are like most of us Mother's, we would go to almost any length to help our kids and grandkids.
    Lynda
  16. nyssagirl

    nyssagirl New Member

    Sandie,
    I was going through my lyme disease file and found out what antibiotics I was on. I was taking Zithromax 250 mg and 2 Plaquenil 200 mg.
    Lynda
  17. buttercakes

    buttercakes New Member

    Wow... Those are some powerful Abxs, I have been on Doxy,
    Amox., Biaxin, Bactrim, Malarone and Bicillian injections.

    Im starting to get discouraged, the fatigue and pain are still with me. I have made improvments in other areas though.

    I went out on medical leave in 6/08, and am not even close to returning back to work.

    The more people I talk to, it seems to be the same story
    very few completly recover.

    The Abxs make me sick too, Im like you Lynda, very sensitive to meds.

    My Doc. wants me to stay on Abxs until I can go 3 months symptom free. I wonder how long that would take?

    Im thinking of trying a Rife machine, I know someone that is using one now and she feels its helping her.

    Another friend is on Cowdens protocol, and thinks it is helping, so maybe thats another option, only problem with that, it is expensive.

    About anxiety and depression, yes, mostly alot of anxiety,
    but depression is getting worse due to the way I feel.
    I take Xanax and Paxil.

    Lynda, Have you tried any alternitive therapies?

    Take care ,Sandie
    [This Message was Edited on 09/19/2008]
  18. buttercakes

    buttercakes New Member

    It does feel like a maze, How is he handling the Chelation?

    My Doc.tested me also, I have Arsnic and Mercury and a few others I cant remember. I have not been able to treat yet, due to money issues.

    Does your son remember getting bit, BTW, how is Mexico?

    Sandie
  19. nyssagirl

    nyssagirl New Member

    I took the bicillin injections, two a week for quite some time. I went to the Dr and had them give them to me. Are you on them now? I have never tried iv's. I have had to take so many medications in my life time I just hate putting anything else in there. I worry about my liver, do you?
    I have heard of a rife machine, but don't know anyone that has used one. I will have to look it up and read about it. I am glad it is helping your friend.
    By alternative do you mean herbal treatment?
    It is hard when you are sensative to meds. I have acid reflux problems and stomach problems, the antibiotics just tear my stomach up. Nexium helps me with it, though.
    Maybe you should ask the Dr. how long he is going to try you on your treatment, if he knows. I suppose it depends on your progress. I know it is easy to get discouraged.
    This doesn't matter and you don't need to answer, but I wondered what state you are in. I am in Central Oregon.
    I wish I knew someone here who has this disease that I could talk to.
    I have thought about trying acupuncture. I have heard that some people actually get help from their pain with it. I don't know how expensive it is.
    Lynda
  20. Daisys

    Daisys Member

    I'm sorry you're having troubles.

    One very important point I'd like to make, and then I'll comment on your case, with what little I can.

    LLMDs put their license on the line when they treat lyme. It's a good practice to never post their names on the internet.

    Please edit and just use Dr. A, or Dr. S, or my LLMD. Right under your name when you post is a small red edit/delete. You press edit, and then can make the change.

    Really, the medical establishment would try to put someone out of business if they knew they were treating us the right way because it is not popular.

    I was told by my LLMD that the ones who are in the society called ILADS are there because either they, or someone they love has lyme. That's why they risk their careers to treat us.

    I feel very protective about them. They are few and far between, and many have lost their license to practice medicine. It's ok to treat acne, TB, AIDS and some other illnesses with long term ABX, but lyme is not considered to be one of those by the medical powers that be.

    OK, now to your business. I did have tingling in my right shoulder, arm, and wrist. One doctor told me it was carpel tunnel, and showed me an exercise. You hold your elbow with one hand and place the held arm perpendicular to a wall. Turn your hand down and press against the wall. This forces the bones apart, and helps alleviate carpel tunnel.

    I have been doing it, and it worked for me. However, I am being treated for lyme, and getting better, so I don't know how beneficial that will be for you.

    Before I knew I had lyme, I took Olive leaf extract, thinking it was good for viral illnesses. It turns out to be antibacterial too. I'm now taking 6 a day, by doctor's orders, 2 with each meal.

    I use the one this site sells. It's under $10 for a bottle of 60. Maybe you could take as much as you can afford until you get help.

    Coconut oil also is very good for being antibacterial and antiviral. I don't have as bad a case as many I read about, and I wonder if it's because I was taking these things.

    Oh, I was also taking Oil of oregano, also from this site's catalog. Another good supp for our illness. I don't see it in the catalong, but they do keep things after they stop putting them in the catalog sometimes.

    I was taking some of those things for years, then got diagnosed with lyme disease. Now I'm taking them as part of my lyme treatment. They're not a cure, but may help with some of the symptoms.

    I know everyone is different, but I think I've had this for at least 30 years, and I didn't get pain until 2 years ago. I had CFS fatigue, and FM soreness and insomnia though. So, I feel like maybe I slowed the progress down with what I was taking--no proof, of course.

    I know some get a lot sicker than me who are being treated, so I guess it really depends on the bite, and how many different issues need to be addressed.

    I have heavy metals (mercury and lead), babesia, and lyme.

    I sure hope you get help from someone, somehow soon.
    [This Message was Edited on 09/20/2008]