Someone please help me asap. Scared.

Discussion in 'Lyme Disease Archives' started by vcamlin, May 24, 2008.

  1. vcamlin

    vcamlin New Member

    I really don't know if I can go into the whole story without totally boring everyone. Long story short (short as I can).

    Early Jan/Late December I was out in the bushes on the boonies taking our Christmas lights down. There are TONS OF MOSQUITOES AND DEERS out there. Early to middle Jan (now it's hard to remember exactly when I found it)but I found a painful infected type groin (inguinal) lymph node right around where I was bitten. I looked it up on the internet. I never knew about LD, the only thing I could really find was stuff about lymphoma which sent me into full blown "lose it" mode because I have a 2 year old little boy who is my WORLD.

    So, they say come back in 4 weeks if the lymph node doesn't get smaller, it only got bigger. I had to have the whole thing taken out in April. My doctor NEVER tested me for Lyme even though I had a weird rash but it was on a tattoo that would have covered the typical bull's eye rash. I did have a definitely quite large/gross bite/infected bite on my very very lower back.

    7 months later, I changed doctors, because I am SO fatigued. My neck and collar bone mostly have stabbing pains in them and I have prickly feelings mostly in my neck which is weird, headaches and sometimes I feel like my hands are going asleep. I have a constant sore throat no matter what. I have weird rashes underneath my arms now that the dermatologist thought were strange and so did my reg. new doctor that I switched to.

    There's sooooooo much more that I can say but long story short. I FINALLY 6-7 months later, I got tested for Lyme. I tested positive for the antibody (which I read that most people do, is that true????) Then I tested only for 1 band, band #41 out of the 3. You have to have 2 of the 3 to test positive. BUT, I have also read that if you don't get tested fairly quickly that this can lead to a false positive. Can someone tell me if that's true?

    They have been giving me benzo's out the bu** saying it's anxiety, but I'm NOT ANXIOUS. However, for some reason, it's masking the pain I'm in. Has anyone here ever tested positive for just one of 3 bands and still had LD?

    Now they have given me so many benzos that I have a tolerance that it's starting not to work. I couldn't even repeat how many I have taken in a day/week/month. It's unbelievable. I'm so desperate to get rid of what seems to be Lyme or PN. Or both. Who knows. I see a Rheumotologist on Tuesday at 9am. My pcp says they specialize in this stuff, is that true? I don't know who to trust any more.

    Now I have a bad benzo addiction. And I wasn't even a drug seeker/taker in the first place. :(
  2. vcamlin

    vcamlin New Member

    Okay, I will get ALL my paper work out regarding this because I have lots of it! They DID test me for other bands for something with a long B. word....I think you'll know what I'm talking about. I didn't have enough of those either. Lapcorp did the testing. Crap, now I can't see your post, I only see mine, so it's hard to refer back to yours...but I'll try to remember. I live in FL., Tampa area and like I said Lapcorp did the testing. I saw no where on the sheet of paper about ELISA, but I'm assuming that's the standard test for testing for antibodies for LD. I tested positive for the antibody, but they say almost everyone does, is that true? No, they didn't run both the IgG AND Igm test, I think it was just the IgG, but I could be wrong I will look at my papers later and tell you exactly what it said. No, they did not run co-infection panels on me. Could it be possible that what ever bit me right on my lower back right where my backbone is could spread into my spinal fluid and went to my brain/CNS. I'm having lots of PN symptoms. Bad Neurological symptoms. And how the heck do they test you for that anyway? So many questions I know but if ANYONE KNOWS, please help. I'm already a chronic worrier and true hypochondriac, so this is driving me nuts and Tuesday can't come fast enough. If I posted twice before in my first post sorry, I didn't read the note about taking it 3 min to appear.

    Okay, that's enough of my BS for now! Anyone who can answer questions, please help. Thanks sooooo much for replying. :)

    Have a good day.
  3. vcamlin

    vcamlin New Member

    How do they treat LD? They gave me Lyrica but it's a new rx and haven't had a chance for it to work because the benzos were interfering. I don't get how they treat it. I already feel like I've got lots and lots of symptoms of LD. I don't want it but I just feel like I do, if not, I've got something that is causing burning stabbing sensations in my neck, collarbone, along with a sore throat that will NOT GO AWAY. Yeah, maybe it's Fibro. But all of these symptoms coincided with this bite. Not right after the bite, but I've read about the progression and symptoms of the disease by month and all makes so much sense. It follows the pattern perfectly.

    So, how do they treat this? I'm in pain. And that, my friend, DOES cause me anxiety.
  4. buttercakes

    buttercakes New Member

    Different natural protocols, Most of the lyme people See A llmd (lyme literate medical doctor)and start them on Antibiotics right away, and yeast meds too. What state do you live in? Sandie
  5. vcamlin

    vcamlin New Member

    ...and felt very ignored. I live in FL. I will to the stupid Rheumy doc tomorrow to see what he has to say. I'm losing my hearing. Not like deaf hearing but something is up. It's been gradually getting worse. My doctor said that you can't die from this, is that true? It can just make life hell? You just live with the neurological symptoms for the rest of your life or do they go away in time? The only symptom that I don't have that makes me think that maybe I don't have Lyme is that my joints don't hurt yet. My knees don't hurt....and they said that's like the main thing that points to Lyme? Do your knees hurt? I don't have swelling either....but sometimes I think that my hands look swollen sometimes...especially in the morning...but that could be from anything I guess. Maybe salt intake? I'm scared. I'm I going to end up an invalid? I'm forgetting stupid stuff, bumping into things...my balance is off. I'm not on benzos anymore at this point. It's been like 2 days now. My vision is getting more blurry. Sometimes I feel like my heart feels weird, almost like it hurts, but I'm too young and eat too healthy-ish for a heart attack, right? Maybe it's just stress but trust me, I've been in VERRRRRRRRRRY stressful situations and never felt this feeling in my heart. Who knows. My blood pressure is good most of the time. I need to get it checked again.

    Anyway, they started me on Amoxicillin <sp? and then stopped it and put me on Doxycycline (sp too!) on a 30 day supply....2 pills a day.

    Like, I don't get it. If I don't have Lyme then the hypochondriac in me wonders if I have brain cancer. I'm just so scared to know. I almost hope it's just Lyme and that's a sick way to think. I don't want to end up retarded (not to use that word lightly - I don't want to offend anyone).

    What are your symptoms? How long have you guys had it. How soon did they catch it and did your symptoms go away?

    *sigh*
    So dang scared. I've got this little 2 year old. :(
  6. buttercakes

    buttercakes New Member

    I know exactly how your feeling, Lyme is serious. You need to get to a llmd asap. Your symptoms sound like classic lyme symptoms. I know its hard, but try not to get yourself all upset, that will only make your symptoms worse. How many mgs of amox. are you on? go to lymediseaseassociation.org for a llmd referal in Florida.
    I was diagnosed 1/08 and have been on anitbiotics since than.
    I have made improvements overall, but not completly better. It takes along time, depending on how long you have had it. My symptons sound alot like yours, my knees only bother me when im in a flair up,(its not my main symptom)My main ones are fatigue, fibro pain, brain fog, rashes, vertigo and the list gos on.... Try to stay calm,
    there is help for you. The people on this board are great. I give them credit for my diagnosis and treatment. we are all here to help you. Sandie

    [This Message was Edited on 05/26/2008]
    [This Message was Edited on 05/26/2008]
  7. vcamlin

    vcamlin New Member

    This better not be brain cancer or something. It doesn't sound like it would be, right? I'm sorry, I'm just so scared. And yes, I will look for a Lyme Specialist. I think maybe my vision is so blurry from taking so many meds. I had to take Vicodin and my Lyrica today and my vision so sooooo blurry. I hope that's all it is, it's usually not that bad.

    Anyway, I hope my journey for an answer isn't a very long one. My mental threshold is wearing very, very thin. :(
  8. victoria

    victoria New Member

    Please look down the board here for my post titled:

    LYME LINKS, INFO & PROTOCOLS SITES == please add on!

    or copy/paste
    immunesupport.com/chat/forums/message.cfm?id=4482&B=LymeDisease

    There are lots of good links there that will give you good info... iincluding how to find a good LLMD.

    I know how confusing it can be at the beginning, but you'll need to educate yourself so you can evaluate your treatment options as you go along. Take heart, you're not alone in this!

    all the best,
    Victoria

  9. vcamlin

    vcamlin New Member

    What does LLMD mean again? I just looked over my lab work again and it looks like they did do the IgG and ImG or whatever it is. So, I guess I don't have it? My WBC is high (not too high, My Neutrophils are high. What the heck could this be if this isn't LD? I'm so scared. I did have a terrible cold which I still have when I went to get my blood work done. I guess that might be it?
  10. vcamlin

    vcamlin New Member

    I see what LLMD means, I scrolled up and saw it. Sorry.
  11. vcamlin

    vcamlin New Member

    Rheumy says that I need to have my brain scanned. :( HE says I don't have LD and my problems are purely neurological...or more. He mentioned HIV and MS. Not something you say to a hypochondriac. :( How does a LLMD clinically diagnose you? Like, what do you they do that the lab test didn't find. All mind found was the antibody and positive band 41.

    Can anyone share their stories about how their lab test came back/how they were diagnosed/what roads they went down to finally get an answer.

    It's sick but I almost took comfort in the fact that it was just Lyme, because I had been through an ovarian cancer scare and then RIGHT after that, a Lymphoma scare. Now this. I don't have HIV. I've been married for 3 years tomorrow and dated the same guy for 5. And I've had HIV tests since I was married AND pregnant. I don't know why I wasted my money there. He's testing me for autoimmune stuff now.

    I would LOVE to hear your stories about how you were diagnosed. Gosh, I feel like you guys are all I have as my family, hubby/mom/brother, are kind of "tired of it" because there has been too many health scares that I overreacted to....supposedly. Getting tested for 2 kinds of cancer when you have a 2 year old is kind of a big deal, but whatever, I'm emotional, what can I say? Next step? I'm going to try to find the doctor that you are talking about...right now.

    Looking forward to your replies. You are really helping me through this. Thanks for everything.
  12. mollystwin

    mollystwin New Member

    Brain scans can have lesions from lyme as well as from MS. So you may want to have this done.

    What do the rest think???
  13. buttercakes

    buttercakes New Member

    I seen a rheumy also before I had my lyme diagnosis,and like you said, it is a waist of time and money. He said it was likely MS or lupas, well it was not either. I ran around town from doctor to doctor like a mad woman trying to find out what the heck was wrong with me. I finally seen a dermatologist who knew what he was doing and said "I
    think you have lyme disease" that was the day I started getting somewhere. He gave me 1 month of doxy(antibiotics)
    and told me to get to a llmd asap. I started on this board
    and the people here directed me on what to do. The first thing was to make an appt with a llmd. (which I did) I had an Igenex lyme test done and it was positive.My llmd started me on more antibiotics and supps. to boost my immune system up. I have been in treatment since 1/08 and slowly improving. If you go to lymediseaseassociation.org
    they can give you a referal to llmd so you can get tested.
    We are here to help you, as much as we can. keep us posted Sandie




  14. vcamlin

    vcamlin New Member

    Do these LLMDs do something different or run different tests than regular docs do? I don't get it. I did have the WB test and it did come back negative. And how do they "treat" it?

    I called the ONLY person I could find today that my insurance covered. He's an infectious disease specialist and they said he does LD cases. Is that okay? Am I heading in the right direction? I'm getting freaked out because my vision is blurry, could be from meds, but I'm not used to it because I really have perfect vision.

    I'll look up that link. Maybe I'm hoping it's Lyme and not a brain tumor or something. I always think the worst. I'm getting so sad and frustrated. I just want to cry.
  15. vcamlin

    vcamlin New Member

    Did ANYONE here just get the normal Western Blot and boom, it was positive? Or did you have to seek out other ways to prove it was positive because you "knew" something was wrong?

    I really would like to hear some stories on how you got your diagnosis exactly, before you went to the LLMD.
  16. buttercakes

    buttercakes New Member

    Hello again, A llmd means Lyme Literate Medical doctor which means he has studied Lyme disease and very knowledgeable about it. Regular mainstream doctors dont know enough to treat it, or they treat it incorrectly. A LLMD will most likely use Igenex Labs, they are 70% accurate in their testing. Quest labs are only 30% accurate.If you want to you can call Igenex or go to their web site(WWW.Igenex.com /800-832-3200)for information. The treatment for lyme disease is longterm antibiotics.
    A LLMD will do the testing for you, all you have to do is get to one. Hang in there and keep us posted. Sandie
    [This Message was Edited on 05/27/2008]
  17. lymelights

    lymelights New Member

    One band you can mean you are positive. Best descripton of testing I found is here: http://tinyurl.com/257mr8
  18. vcamlin

    vcamlin New Member

    I LLMD is a long drive away, first of all. And the receptionist says that it costs "hundreds" just in the beginning. Can I ask what you all paid for yours? I'm stuck.

    I called and got my labs faxed to an infectious disease specialist but they said it is up to their discretion if I get to be a patient of theirs or not. I WANT TO TALK TO SOMEONE ABOUT THIS. This is outrageous.

    LLMDs start out in the HUNDREDS? Well I've spent over a grand trying to find out what's wrong w/me including co-pays and meds....I'm broke now. I'm so pissed and upset. What am I to do?
  19. vcamlin

    vcamlin New Member

    I found a guy 2 hours away who wants $875 an hour plus the extra $5-600 in that Igenex testing (or whatever it's called)

    Does that sound right? I can't afford this.
  20. buttercakes

    buttercakes New Member

    On my first visit to my LLMD it cost me about 385.00, 2end
    283.00,3rd 150.00,4th 75.00. I go 1 time per month, if the visit doesent go over 1/2 hr. its 75.00. I have gone into debt to get well,but its worth every penny. I know its expensive, but what other choice do we have? I hope you can find one thats more affordable good luck, Sandie