i feel so illigit

Discussion in 'Lyme Disease Archives' started by boscosmom, Aug 12, 2008.

  1. boscosmom

    boscosmom New Member

    b/c my results didn't say "positive" except for the IFA 1:80 titer.
    and then my markers on some bands but, not enough to be positive.
    how many others are like me???
  2. sorekitty

    sorekitty New Member

    I feel like telling people, "Ah yeah I sorta have Lyme disease but it's complicated, Duh!"

    I have my results below and both responders were so certain I had lyme. If you count the IND as ++ then I guess I do. So how are we supposed to count the IND? I am happy to have the possibility of getting well but this is the most confusing disease.

    What are you doing for it at the moment? I have to clear up a lot of digestion problems before I can go for the anti-biotics. I just want to be healthy, ya know?

    take care, Molly
  3. boscosmom

    boscosmom New Member

    me...i only had the 31 and 41.
    then the IFA was read as positive but, i think other things can cause that.

    i have a lot of neuro symptoms!

    that really scare me.

    i am on doxy 2x a day starting on sat. hopefully this works.
  4. boscosmom

    boscosmom New Member

    my 41's were positive (+)
    and 31's were ind
  5. sorekitty

    sorekitty New Member

    So are you saying that if you were me you would feel confident in telling people "I have Lyme disease"? I am still having a difficult time understanding all this and my brain isn't working so well these days either.

    Thanks for your support.
  6. boscosmom

    boscosmom New Member

    i guess we both have the same test, essentially...since i also have the positive IFA titer (1:80) but, i worry too.
    i called dr. harris from igenex yesterday and he said...that all these thing put together: my IFA, 31 and 41...mean lymes at a percent of 98% reliability...so i guess i should be more confident too.
  7. buttercakes

    buttercakes New Member

    I know how you feel, But the Dr. would not tell you that if it were not true. Please go to a LLMD, and let him
    diagnosis you by symptons and tests results. I tested negitive 3 times before I got my positive. Good luck, Sandie
  8. boscosmom

    boscosmom New Member

    i have such neuro symptoms for 3.5 years now...and every neuro we have seen (and i went to mayo and barrow neurological in phoenix) and they say no neuro diesase...but, never tested for lymes till now.
    i was a field biologist (fresh water fishes) so i have had many a tick crawling on me.
    not to mention the white footed mice we had in our beautiful denver garden district home when all this started.
    i am on doxy now and my head feels clearer and better...then whamo...i'll have a tremor in my arms and hands (internally) that i never had and my eyes, nose and mouth dry up at once (had that before) but, it is worse on the bad times now...and all these cold/chilly spells.

    does this mean the med is working?

    ty so much, sc
  9. buttercakes

    buttercakes New Member

    Your respondeing to the doxy, thats even more proof that it is MOST likely Lyme. I know how you feel, I have been there, trust me! You have so many Lyme symptoms, and have tested negitive on almost every other possability. My LLMD started treating me based on symptoms, it was me who insisted on the Igenex test, but he was sure it was Lyme.
    I needed the valadation for my own peace of mind, so I truely know how you feel. A lot Lymies never get a positive from Igenex, so their good LLMDs treat them based on symptoms.Your positive on band 41, that band has to be gum disease,syphillas or Lyme, if its not the first of the two than it has to be Lyme. If you go to a good LLMD he will help you understand, and treat you, and you will improve, that will be your confirmation. I will support you any way I can. Sandie
  10. Daisys

    Daisys Member

    I can one up you here.

    All my tests came back negative. Then I was put on doxy to maybe kill some bugs, and what happens, parts of them get into the blood stream on the way out and the immune system sees them. That's the chance that a challenge test will come back with a positive. Mine didn't.

    But, my history, and my reaction to doxy looked like I surely must have it. So, my LLMD just started treating me for it.

    Then he ran a CD57 test. CD57 is the name of a white blood cell that seems to become depressed only by lyme disease and not any other disease that they know of at this time.

    It's common for people to have about 200 in a test. 60 or under are considered to be lyme positive. This is very controversial, and many don't use this test except to track progress. Mine came back 50. So, my LLMD felt it to be proof, and I'm so glad he did.

    Once the lyme itself seemed to get under control somewhat, Babesia raised it's ugly head, and now I'm being treated for that. (I guess this is common. It floored me.)

    I'm showing progress that is very encouraging to my doctor. He feels, without promising, that I very well could be in remission in about a year--full energy and no pain. At that time, I'll have some herbs (not yet formulated) to keep me from relapsing.

    Well, if I can't be cured, I'll take the controlled remission. :)
    [This Message was Edited on 08/16/2008]
  11. boscosmom

    boscosmom New Member

    so what else would cause my positive IFA?
    i have been tested for syphyllis...even in the spinal fluid...plus i would have given it to my children or hub by now surely...anyway, it was totally neg...blood and sf.

    also, just went to the dentist...i asked specifically about gum diseae...he has this little needle test and he said i rank high on VERY healthy gums...so that is good.

    i also had the 31 so i wonder if that is an indicator of something.

    gosh i am so hard headed and afraid...
    i think b/c i feel so much worse on the left side...like i have symptoms on both but, they are amplified on the left.

    even the left side of my throat and face...like hot or cold liquid is hard to feel on the left even.

    a lot of times i feel crooked...i guess that is a balance thing.

    i'm just scared...i go to the doc on wed.

    ty all so much, sc
  12. buttercakes

    buttercakes New Member

    If you have a clean bill of health from your dentist, test negitive on syphilis then it ONLY can be LYME. Band 31 proves a Lyme infection of 1 year or more. also, My right is my worst side. (pain,weakness ect..) Sandie
    [This Message was Edited on 08/18/2008]
  13. boscosmom

    boscosmom New Member

    ty again.
    i am just so worried...
    my left fingers feel wierd like hard to coordinate some and even my left eye will have a punched sensation like it is swollen and the lid seems to blink slower or i just can't feel it b/c my hub says it is normal.
    even my left jaw feels tighter and slower to chew.
    and the left side of my throat is more numb.
    i am so scared and yes, i have been checked upside down for ms...
    i did have a slightly positive ana when all this started 3.5 years ago but, now the doc is saying that could have been from the lymes.
    do you have that?
    how long were you tested from when your symptoms started?
    my 31 was IGG does that make a difference and it was IND...does that make a difference?
    should i get the extra test to confirm the 31?
    what is the CD57 the others spoke of?
    i am so scared b/c our children are little and i have all this weird stuff.
    also, it is sometimes such an effort to talk...like not from the vocal cords but, b/c my lips and tongue feel numb and it feels so weird and requires too much energy.
    then the dizziness and head pressure and delay feeling in my left leg (which was my first symptom with the dimming vision)...and still everyone, including specialized neuro's say i am totally normal LOOKING>

    UGH! do you or anyone else have all this????

    i am just worried.
    ty sooooo much,

    oh and for 3 years i was dxed with fms and cfs...go figure...that was mayo clinic...ha

  14. buttercakes

    buttercakes New Member

    Everything your saying, I have experienced with the Docs. they all said nothing was really wrong with me, Just FM and CFS. I have had EVERY symptom you are discribing!! Really!! I got NO where until I seen my LLMD. I had symptoms for about 10 years and was told it was FM and CFS.
    But here is the clencher, 7/07 I was out in the woods and was bit by a tick, I had the rash and flu like symptoms, thats when I went to a LLMD and had my Lyme test done and began Treatment. I also had a positive ANA. The CD57 test,from my understanding, shows how your body is handling the disease. I honestly know what your going through, I was suicidal at one point, Lyme is a serious disease and will get MUCH worse until you get help. If I were you, I would be running to a LLMD for treatment. Have you had a consult with one yet? Please my dear, instead of trying to convince yourself that it is Lyme, and wasting all your energy on stress, put yourself in the hands of a LLMD, this is your next step, you owe it to your health and your kids. I check this board everyday, and will help you in anyway I can. HUGS, Sandie
  15. kellyann

    kellyann New Member

    i went to a crazy rmeumy. I tested pos. on the igenex test.
    but according to her you treat lyme with 2 weeks abx and thats that! No such thing as lyme disease according to her.
    She is nuts. I tried asking her what if I had been biten years ago and did not know it and as a result that is where my pain and sickness comes from: hence lyme disease. She would not have it, she said I had fibromyalgia and that was the end of it! I was so pissed I only scored 2 out of 18 on the fibro score - I was done listening to her nonsense. By that time I'd have rather she not even touch me. Her attitude was that I was soooo stupid to even think I had Lyme. I won't go back there ever again.

  16. gapsych

    gapsych New Member

    I can see why you would be indecisive. I think you should say what you feel comfortable with.

    My question with this whole Lyme thing is, why do so many people get bitten and never get Lyme.

    My theory and it is just a theory, is that our immune systems are compromised by ME/CFS and that is why some people end up with Lyme.

    BTW, I just learned something new. Just because you respond to antibiotics does not mean you have Lyme.

    Confusing isn't it?

    Take care.