Am I the only one on the planet ... ??

Discussion in 'Lyme Disease Archives' started by rooftile, Aug 29, 2007.

  1. rooftile

    rooftile New Member

    Got Neuroborelliosis, got FM, got ME, and probably everything else that's going.
    Bed-ridden, spoon fed, liquids only.
    Too much pain, can't be touched, can't bear clothes, bedclothes.
    Rampant runaway inflammation, the slightest injury causes huge swelling and more pain - and doesn't go away, ever!
    Early days (2 months) of abx, had the ivermectin for microfilial worms, no sign of any improvement, maybe worse if anything.
    I feel like I'm the only one like this.

    If there is anyone out there remotely like me? Better still, anyone been there, done that, got fixed?

    I would love to hear from anyone who can give me some words of encouragement.
  2. rooftile

    rooftile New Member

    Thanks for the encouragement and kind words, when I start improving I'll let you know.
    We don't use 'Lyme' in the UK except as an easy abbreviation.
    Neuroborelliosis is prefered by LLMDs in the UK if your nervous system is affected (like shot to hell!)
  3. victoria

    victoria New Member

    is probably a better name to be taken seriously unfortunately. The spin 'doctors' are busy turning Lyme into a fad disease sadly.

    Hang in there rooftile, my son has herxed badly altho not as bad as you; you do need to feel worse before you can get better unfortunately, or the meds are not working.

    27 months later he (usually) doesn't have anywhere near the pain he did (unless herxing) or brain fog. He is now using mepron and other meds to treat very likely babesia as he gets weird head sweats and his neuro problems have been difficult to get rid of.

    If you don't mind my asking, what was ivermectin used for specifically?

    I have seen how difficult this is, I hope you make it through without losing hope...

    All the best,
    Victoria

  4. rooftile

    rooftile New Member

    Hi Victoria
    This is to treat worms - look up 'river blindness' on the internet. Only 3 pills, one a day on the 1st, 7th and 11th day - supposed to kill em all. Seems like the worms associated with borellia live in the lymph glands and it is their larvae that get everywhere (see elephantitis). So a normal parasite cleanse which just clears the gut won't touch them.
    Regards
  5. rooftile

    rooftile New Member

    Hi Molly
    So you know all about not being able to bear clothes too - I found shoes the hardest of all. But that was before I got this bad.
    All my pain seems to be associated with imflammation of the tissues and especially the blood vessels.
    If I get the slightest knock the affected bit swells up and won't go away. My doc says this is the duff immune system overreacting ...
    Is/was yours the same?

    Rooftile is my nom de plume because that's all I can see from my bedroom window. And I am far too sick to do this myself so my hubby does all the typing and stuff - so a little masculinity may creep in.

    Regards
  6. victoria

    victoria New Member

    and a big HELLO to your husband - he's one sweet guy to be reading/typing for you!!! You are blessed with good support obviously!

    all the best,
    Victoria

  7. Kittey

    Kittey New Member

  8. tansy

    tansy New Member

    in that although I have been as bad as you are, I was not bedridden for years at a time. The pain bit used to get to me, not only could I not stand anything touching me it meant hugs were agony too. Pain that went on relentlessly has now gone down to a more bearable level despite additional mechanical problems.

    For now the runaway inflammation seems better controlled but that may change if I go ahead with scheduled surgery.

    I was Dx with neuroborreliosis and I guess it was by the same UK LLMD. Actually I like being able to use that term as well, since my neuropathies are obvious the neuro bit seems to fit.

    My orginal Dx was ME and apparently that still stands, I have CPn too.

    I have not been able to afford consultations and tests for some time so have not been tested or treated for fillial worms. I opted for the Cowden protocol and now use some of Stephen Buhner's recommendations.

    Though severe I was not as bad when I started as you are now. I am better now than I have been for some years. Everyone can see the difference.

    Hang in there because it takes time; the early stages are the worst; and most of us feel worse before we start to experience improvements.

    TC, Tansy
  9. downwithlyme

    downwithlyme New Member

    Unfortunately, it's part of Lyme. Don't ever give up though. It will get better. I promise. I was also bed-ridden, muscle spasms, seizures, tremors, terrible joint pain. The joints were so bad that there was no fluid in between any of them. Needless to say, they would pop out of socket if I rolled over wrong in bed. I had broken bones in my feet jut from walking. I was on quite a few different antibiotics. I would also Herx in a bad way. I had to stop treatment immediately because all the toxins in the body began shutting down my kidneys and liver. They could not keep up. I would wait to feel a bit better and then back at it. It's a very vicious circle. The great news is that you will get better with proper care. The Herxing will become fewer and farther in between. They will be less intense. You will feel better. It is, however, a long road. I lost out on the first 2 years of my baby's life along with my quickly growing 11 yr old. I wish I could give you more of a glimmer of hope. I know it doesn't sound like much. But, hang in there, take only minute by minute. That's all you can do for now. Stay determined to kick this little bug's butt. Any venting you would like to do or any questions, I would love to be able to help. It's my way of trying to give back to our Lyme community. Thank you for taking the time to read my reply. I know you don't
  10. Chootik

    Chootik New Member

    Hi Hon.

    So sorry you are going through ruff times! I also have NeuroLyme and had terrible Palpatations for about 1 1/2 years untill I got started on a good Mineral and Vitamin B supplement and started the Anti-Babesi antibiotics.

    What everyone has said is true.. you will get better! I know that might be hard to believe now but eventually little by little you will see improvements and you will feel better. I don't know if any of us will ever be 100% again, that's hard to tell. But at least we can be functional again which is still good.

    Anyways, if you get a chance to respond, I do have a question about "Ivermectin" and the warms you mentioned that live in the LYMPH system if one has Lyme.

    I have never heard that!! Can you tell me where you found this info?? I'm really interested because since I got sick (4 yrs ago) I've had a sluggish Lymph system and have these 2 bumps behind my knees and it hurts sometimes. Needless to say I've done many Lymphadic messages and I jump on a Trampline but it's still there and I'm still sluggish. So if this could be something that can help me, then I'm on it. :)

    Anyways hon, I wish you all the best. Hang in there and keep posting. This web site is a life saver and most people are really nice and helpfull.

    Lots of hugs
    Maryam
  11. highcotton

    highcotton New Member

    Rooftile, I am so very sorry that you're so sick with this--

    if you are up to it, can you explain this worm stuff?
    Is it primarily Lymies, or does everybody have these?

    In any case, If you are killing them, no wonder you feel so bad!

    The year before I got ME, I picked up a parasite in Mexico and was treated for it. My doc at the time said it was something 'that you usually see in dogs and goats," not people.

    I wonder how many beasties we are all carrying around??


    peace and take care,
    highcotton