only had first test for lyme

Discussion in 'Lyme Disease Archives' started by bettydroop, Mar 13, 2007.

  1. bettydroop

    bettydroop New Member

    and it was only positive two bands out of the five. They were 28 and 45 ???? I mean I have no idea what this means. Dr at FFC said we COULD do next test but might not be neccessary? I mean I have all these different Lyme symptoms. Should I do the next test? What does "HGE markers" mean -? I think it was written next to the number or something.

    Thanks - and more thanks



    Betty the droopster
  2. mollystwin

    mollystwin New Member

    Please do the igenex test. It's very important. I just quit FFC because they failed to diagnose my lyme disease. I spent over 10,000 with them over 10 months. I kept asking for an igenex test because my twin sister has lyme but they kept telling me I didn't have lyme.
    I went to my sister's doctor for an igenex test, and guess what, I have lyme disease!!!! It's been so frustrating. FFC tries, but most of those clinics are not lyme literate. Some clinics are better than others from what I understand. But if your dr is telling you that you don't need more testing, he/she is mistaken.

    Insist on the test. Don't take no for an answer!! I didn't show anything on any bands on my first test. Lots of bands showed on my ignenex test.
    [This Message was Edited on 03/13/2007]
  3. victoria

    victoria New Member

    sometimes the best way to tell is to try a trial of abx for a month... if you react, you know. Also sometimes only after trying abx does a test finally show positive if one has had it for a long time.

    The average $$ spent to get a dx of Lyme is about $65,000 I have read... I forget how many years. All I know is that most get sicker before they find out.

    Also, besides reading the info here, check out ilads.org, and their links, including lyme net flash, people can tell you who the good LLMDs are.

    all the best,
    Victoria

  4. bettydroop

    bettydroop New Member

    thanks for replies! Should I go to a infectious disease specialist ? Where should I go? I have been to FFC and they HAVE really helped me BUT>> I really think I need this test- especially after the good advise here.

    I have searched around and so far - all I have come up with are naturopaths, and some of those sites I looked at were kinda "different" in a way - I just want a more mainstream Dr. for now, to do the testing and abx if I need them. Seriously have Nothing against them as I am in a more "alternative" type of health field myself, and I think they can be the BEST- really! I am so confused right now- where should I go? Would that be any different than the FFC?

    Thanks for any info - you people are wonderful.
  5. mollystwin

    mollystwin New Member

    Will the dr at FFC give you the Igenex test? You could try asking them and then when you get results go from there.

    Good luck!!
  6. monicaz49

    monicaz49 New Member

    what are ur symptoms
  7. bettydroop

    bettydroop New Member

    HI thanks... for asking.

    Well been to FFc of course, tested and found to have 2 bands "reactive " for Lyme what ever that means... also the typical co infections Myco something and EBV and I think a chronic Pnumonia and low thyroid (have been treated for that) low cortisol ( take cortef and it helps- finally SOMETHING helps me- but of course -still no where near) and I dunno if I got it all but you get the pic. The Pneumonia is where it all started for me. I went right into those symptoms of pain exhausted all the time, etc, been to Rheumy diag's with Fibro and then FFC gave me the diag of Chronic fatigue.

    I came over here from Fibro board (lyme) thinking that there just has to be something like that wrong even though I only tested the "two bands" for Lyme- (28) and (45).

    I have completely emmersed myself for the last few days into the lyme and have heard different "thoughts" on it so to speak and I am worried, really worried. "THEY" want to stop all long term antibiotics- saying basically that Lyme disease is BS- and If you even were to have this rare disease... you only need a month of abx tops and long term its not good. They even say that people or sites that say "find a lyme Literate Dr" is also BS. I dont understand all the politcs here, I dont understand why there all these problems! Its NOT helpful!!!! I have read alot about the alternaive medicine and long term abx so I have some opinions anyway.

    I decided that I am going to go in and ask for the next Lyme test (is it Western blot? -see here I get confused too because I hear diffenrt opinions on even the CORRECT test to take) at the FFC BECAUSE>>> ICANT FIND a LLDR or whatever here in Seattle. I did find afew I guess but they seemed (only to me ) way out there and was hoping to see a infectious disease specialist or something like that. They funny (maybe not funny) thing is, is they made it out (from what I searched) in different articles nad such that we have had VERY few cases even in Washingotn! Now, I am NO expert here but I have lived here all of my life...gone camping and all of that, and all of the Western part of Washington state ARE WOODS RIGHT!!!! Helllooo... plus, by the looks of it, these teeny tiny little ticks are teeny tiny! I couldnt believe it! No one would really even see these things. Almost like a piece of fuzz or dirt or something. Anyone could have been bit and NOT know it! Its so scary.

    So sorry -I realize that I am rambling- Thanks to this board I am going in next week as soon as they can get me in... ( calling monday though) and take that test! I just gotta know.

    I have to find out, I was thinking today that if I feel like this at 39 yrs old, what will I feel like when I am say 55? Maybe 100- cause I already feel like I am 98.

    I just realized MOnica.... I didnt even answer your ? Well along with all the other cfs and Fibro symtoms, I have discovered muscle twitching and eye floaters (came out of the blue ) and the way my pain is- was described somewhere I read- and is exactly like mine. I can be fine one minute even and the very next in pain. It travels (typical fibro ) but the way it changes so freq was like lyme symptoms. It changes SO fast- its so strange.

    Anyway THANKS SO MUCH for reading- I know how much energy it takes sometimes!

    Betty droop -- Karen
  8. victoria

    victoria New Member

    it might also be helpful to read what's in the library here about CF/FM and lyme. Also be sure to check out ilads.org and their links, also look for lyme flash net as they have a doctor referral section incognito for good LLMDs. Also www.lymediseaseassociation.org has a lot of info and doctor referrals.

    Unfortunately lyme treatment has become a political battle with all sorts of positions being taken, so it is necessary to educate one's self as much as possible.

    hope that helps.

    All the best,
    Victoria
  9. suexi

    suexi New Member

    I can relate to the confusion you are going thru...
    I did the western blot(ordered the kit & took it to my pcp). She basically said it was positive but I could tell that she really didn't know didly squat about Lyme or how to read the results(not really anyway).

    Recently I talked to a very good lyme specialist over the phone(whom I faxed my results to). He said: "your western blot is positive but its weak" "BUT from ALL my symptoms I have, he said "YES" that I have Lyme.

    Unfortunately, prior to that i went to another so called "lyme specialist" and he ordered the PCR. Which I strongly feel at this time, that I DID NOT need so I'm not going back to him.

    I'm going to be soo happy when i get the bill FOR That.omg. *sighs*

    So in my opinion, get the Igenex Western blot, then get to a good LLMD. Unfortunately, anything good where I am is too far.. I would have to fly... And i'm just not up to it right now.

    Good Luck to you,
    If you have any more questions, just ask & i hope i can help.
    Susan

    [This Message was Edited on 03/19/2007]
  10. Hootie1

    Hootie1 New Member

    I gave blood and had the igenex test sent overnight last Wednesday (3/14). I was told that the blood was refrigerated and today I got a call and was told that I needed to give them a payment via credit card... no problem, however, I was concerned that the blood should not sit that long. I was told that the blood needed to be taken M-T-W. Here it is Tuesday of the next week- will it still be good?

    I have such a problem trusting any company anymore!!! I swear..nothing seems to be done right the 1st time! He said that it should take about 2 weeks for the results. We'll see. The problem is that if it comes back negative now, I will be worried that maybe the blood was not handled correctly.
  11. suexi

    suexi New Member

    I'm sure everything will be ok..

    Here is what I did; My dr. told me to get it drawn on Monday then go straight to the office to have it shipped out; I think they said if i remember correctly that it would take less than 1 day to get there. I assumed right after they got it, they ran the test.. I could be wrong, maybe they just stuck in the frig..??

    My dr. also put an icepack in there just to be safe...

    So everything was ok.. and it turned out positive..
    Susan
    [This Message was Edited on 03/20/2007]
  12. Chootik

    Chootik New Member

    Make sure if you're fed-exing it you either have the proper packing slip and packaging or don't tell them what it is.

    They gave me such a hard time with this, I had to go back to the Dr. office get the corect box for it and then get the correct paking slip for it and it took for ever. Needless to say I learned my lesson.

    Good luck.
    Chootik