Please tell me

Discussion in 'Lyme Disease Archives' started by vcamlin, May 30, 2008.

  1. vcamlin

    vcamlin New Member

    That someone else here has weird sensations and sharp stabbing pains (totally different sensations) in their neck and collarbone. My rib cage is really sensitive and there is a reallyyyyy sensative spot on my right hand side of my ribs where I can't even sleep on it most of the time. The thing that bothers me the most is my neck and collarbone stuff. It's a tight feeling and almost feels creepy crawly, if that makes sense? It never stops. The shooting stabbing pains come and go and pop up in different places in my neck and collarbone...they don't bother me as much as the constant stiff/tight/creepy crawly sensations in my neck. It makes me almost panic and it often makes me cry because it's so annoying and scary. I have headaches often and I always feel tired. My throat is ALWAYS sore and my ears hurt often. Anyone else? I'm on Doxy 100mg 2x daily...I don't feel any better yet. What the heck is going on with me? I feel like such crap and it is scaring me. This has been going on since Feb/March and I'm at my wit's end with feeling this way.

    I'm having a hard time understanding why Igenex tests come back with their "own" positives? And why there's this underground world of people that have LD who have to pay hundreds/thousands for treatment for LLMDs. I just can't wrap my mind around this.

    Sorry, I'm having a bad day. :(
  2. wld285

    wld285 New Member

    I am not new to "illness". Been sick over 30 yrs. Diagnosed with CFS and osteo arthritis. I am new to my Lyme diagnosis though. Have been on Doxy also since Nov. with a few breaks in between for testing.

    Finally came to the realization I need to go to a real LLMD if I have any chance of feeling better. I have not had any improvement on the doxy either, actually feel worse while on it.

    That comes to your next post, herxing is a reaction from the antibiotics working on the Lyme and they do not like it. Can be anything from severe fatigue, muscle and joint pain, flu like symptoms, sore throat, headaches and on and on.

    good luck!

  3. vcamlin

    vcamlin New Member

    I had no idea about Chronic Lyme. It's really sad. I had no idea that so many people suffer and have to pay so much money to a doctor that insurance won't cover. I'm going to get the Igenex test soon, and that's going to be expensive...let alone finding an LLMD. My body is doing all sorts of weird stuff and it's scaring me. I've got little twitches and weird muscle sensations (almost like the feeling of the beginning of a Charlie Horse).

    I am having a hard time with this. This whole thing is just sad, you can't get treatment because the tests/labs suck?? I don't even know if I have Lyme yet, I'm scared that it might be something more serious but on the other hand, this feels terrible and it just seems so chronic...has anyone gotten better or totally cleared from this thing? I never knew what this could do to you. It HAS to be something bacterial that is messing me up, my inguinal lymph node swelled up soooo big that they had to remove it and it coincided with the bite on my back. I am a true hypochondriac (a real one) and having all of these weird sensations and stabbing/burning pains is setting me off into panic mode. It's so hard to sit here and feel all of this. My mind wonders into what else it might be. :( I really feel bad for everyone with this disease....I just never knew...

    But my whole family has become very aware of this problem with their own search on the internet. There needs to be better help, tests, and awareness about this.

    I came in with a swollen lymph node and told my doctor about the bite which took a while to finally heal and she pretty much blew me off. What if she had started doxy right then? Would I be feeling this crap?

    I have a neurologist appt on Wednesday and I'm scared, then one with an infectious disease guy....I guess I will go to them until I can get to an LLMD. I need to rule out other things too.

    That reminds me off a question, but I will make a new post.

  4. bunnyfluff

    bunnyfluff Member

    Lyme is very political. The truth about this epidemic is being hidden from ppl.

    Igenex does not always provide a positive result. Everyone in my family has now been tested. Our results vary, but we do all have lyme, and some co-infections.

    Igenex is a specialty lab, and a more sensitive test. Join us at some of the other message boards, and we can help you to understand some of this stuff.

    There are ppl that have recovered! That is the good news. You can read their success stories.


    Sorry, my posts are being edited by someone else to remove information. Evidently there is a problem I am not aware of.[This Message was Edited on 06/01/2008]
  5. buttercakes

    buttercakes New Member

    I felt just like you before I was diagnosed,Once I seen A LLMD and was properly diagnosed, it gave me peace.Please dont put off an appt. with a LLMD, Thats where you will get your answers,diagnosis,treatment and peace. I know it is expensive,but its the only choice we have to get properly treated. Take Care and good luck.Sandie
  6. vcamlin

    vcamlin New Member

    Thanks for the kind words. I am prone to panic/anxiety and feeling all of these weird sensations in my body is making it worse. This is really hard to deal with. :( The not knowing is terrible.
  7. buttercakes

    buttercakes New Member

    You'll go broke going from one mainstream doc to another, I actually had a doc go off on me, telling me there was no such thing as chronic lyme, he said if I already had 1 month of doxy then I was cured!!! yelling at me, He said
    "get the he## out of my office". Sooooo all of us lymies know what your doing through. Please, the only advice we can give at this point is get to a LLMD asap. Then take it from there.
    This is the first step towards healing. You will feel so much better just knowing whats wrong. please trust us, We have all been where you are. Sandie