Stressed Lyme Titer vs. Lyme WB

Discussion in 'Lyme Disease Archives' started by Shalome1990, Jan 20, 2009.

  1. Shalome1990

    Shalome1990 New Member

    I was diagnosed by the FFC in October with Lyme/Ehrlichia.

    I am in Florida, no LLMD. I was sent to an infectious disease doctor. He said that everyone who comes to him and says they have lyme, don't. He said when he tries to re-create the results with his lab, they are always negetive.

    My Igenex showed IGM - 5 bands (but not the five that they need for CDC)
    My Igenex showed IGG - 6 bands positive/CDC postive

    Can anyone give me a simplified version of why the new test said negetive for both IGM and IGG? I asked him for the test that showed the specific bands. The lab said they did not do a Lyme WB, but a Lyme Titer. What is the difference? I would have thought that I would at least show positive for IGG.

    I have a LLMD apt. in March, and it is about 17 hours away. I am not going to cancel it, but why oh why is there such controversy???
    Is it just because this lab doen't know anything about Lyme?
  2. Nanie46

    Nanie46 Moderator

    Hi,

    There are several problems here.....

    1. Your Dr does not know anything about how to diagnose lyme.

    2. Regular labs do not have the sensitivity, specificity and accuracy to produce good results
    on these tests. They also do not test and report all bands which is incomplete and flawed. These labs use the CDC criteria for diagnostic criteria. It states right on the CDC website that these criteria are meant for surveillance only and should not be used for diagnosis, yet labs and Dr's do this all the time.


    3. Lyme is a clinical diagnosis based on history and symptoms and sometimes supported by labwork. It should never be excluded based just on labwork.

    Lyme titers miss most cases of lyme. It is merely a screening tool that is worthless according to Dr Joseph Burrascano, a leading lyme expert.

    Western blots are looking for antibodies matching the different parts of the lyme borrelia spirochette. Each part has a different weight, which are the band numbers.

    Dr Burrascano says that you should see at least the 41KD and one of the specific bands. 18, 23-25, 31, 34, 37, 39, 83 and 93 are the species specific bands.


    It is absolutely necessary that you read Dr Burrascano's paper titled "Advanced Topics in Lyme Disease-Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses", October 2008.

    You can find it at:

    http://www.betterhealthguy.com/images/stories/PDF/LYMDXRX2008-October.pdf

    It is very comprehensive so I advise you to start by reading pages 3-11.

    Pay particular attention to page 7...."diagnostic hints", and "diagnosing later disease".

    Dr Burrascano says that "The ELISA (lyme screen) is not sensitive enough to serve as an adequate screen, and there are many patients with lyme who test nagative by ELISA yet have fully diagnsotic western blots."

    He also says, "Because Bb serologies often give inconsistent results, test at well-known reference laboratories." (like Igenex)

    It is also necessary that you print the Dr's entire paper, highlight those points and others, and take it to that uneducated Dr. Show him the info yourself and leave it with him to read.

    That paper is just the tip of the iceberg as far as available info. Also go to www.ILADS.org.

    It is going to be up to us to educate many of the Dr's, but first you must educate yourself so that you know much more about lyme than the Dr. Otherwise you may never get proper treatment. I am glad you will see an LLMD, too bad it's so far. Did you try lymenet to find an LLMD in FL? Yesterday their site was down, but should be back up soon.
    [This Message was Edited on 01/21/2009]
    [This Message was Edited on 01/21/2009]
  3. Shalome1990

    Shalome1990 New Member

    I agree that the doctor is clueless about Lyme. He was too arrogant for me to even think I could try to help him learn anything.

    Is ELISA the same as the lyme titer he ran?

    I am sure I have Lyme disease. I knew something was wrong for so long, but I did not know what. The Fibro and Fatigue Center in Atlanta was finally who gave me the order for the Lyme WB and the co-infections panel. (I didn't even know what Lyme was at the time!) I am so thankful for that!

    On the IGM I was positive on 23-25, 31, 34, 39, and 41. (CDC and Igenex positive for Lyme)
    On the IGG I was positive on 18, 31, 34, 41, and 66. (Only Igenex positive for Lyme) That is why I didn't understand how the Lyme titer was negetive. I tried to find out what their criteria was, but they pushed me out saying that they could not talk to me, they would call me later. (No call)

    I did try lymenet to find a doctor and I did get a list. The one closest to me is no good, he only treats with colliodal silver. The next closest one is in LA and he doesn't treat children.

    There is a lady who runs the tallahassee lyme group and she goes all the way up to PA for treatment. She is 70 years old and has had lyme since she was 30. She said that she feels better now than she did at 30!! She has sent many folks to this doctor with good results. (He has had Lyme)

    So, I am going that far because I don't want to have to explain what I have, I just want someone to treat me and help educate me even more. I am so tired of seeing doctors who don't know, or just don't care.

    Since I have fibro/fatigue, my PCP always wants me to talk to a counselor. "Supposedly they can help with chronic issues." Well, she is from CT and she can't believe that doctors here do not know about chronic Lyme!! Actually, because of me, she is going to have her sister with Fibro/Fatigue tested for Lyme.

    So, I told her....only through Igenex and test early in the week!!!
  4. Nanie46

    Nanie46 Moderator

    Hi again,

    Yes, the lyme ELISA is a lyme screen or lyme titer. I am not surprised that it was negative. It is a very poor, insensitive test.

    I live in PA and I plan to call a LLMD on my list from lymenet as soon as I get my Igenex results. The one I plan to call also has lyme..Dr S.....I believe his whole family does. He is about 2-2 1/2 hours from me, so I hope he is taking new patients. I wonder if it's the same one you are going to go to.

    I am excited to hear that you finally got a correct diagnsosis and will get proper treatment.

    I plan to educate alot of Dr's in this area if I get the proper diagnosis and treatment. It's a travesty that so many people are suffering and Dr's don't have a clue.
  5. munch1958

    munch1958 Member

    See failure of testing Lymecryme.com

    Be sure to read the Dearborn Conference paperwork.
  6. Shalome1990

    Shalome1990 New Member

    I am going up where you are!!!

    I bet we are seeing the same doctor, because my doctor has Lyme too!!!

    When you called, does this doctor only work M, T, W?

    If you go, please tell me how you like him!!! I would love to know before I invest so much time!!

    I plan on doing my fair share of education around here too!!

    I wish you the best at your apt.

    Munch, I look at every single thing you post about lyme. It is always good information!!
  7. Nanie46

    Nanie46 Moderator

    Hi,

    Dr S. is in the town of B in central PA. He is actually seeing me on a Sunday, but the nurse...his wife, did tell me that they only work several days a month. The whole family has lyme.

    She was really nice on the phone and gave me alot of info on what to expect from my first visit, a 4 hour evaluation.
  8. Shalome1990

    Shalome1990 New Member

    I am almost to the top of PA (near Erie), almost in Ohio actually.

    But, I hear my Dr. S is good too!!

    I hope you have good results!! If you can, try to keep in touch, I will tell you what the doctor tells me, and you can tell me what your doctor said. Maybe we will learn more, faster!!

    But, it is funny to know that my Dr. S from PA has lyme too!! Small world!!

    LOTS OF LUCK TO YOU!!!

    Shalome

  9. Nanie46

    Nanie46 Moderator

    Hi,

    Thanks so much, and I am glad you are getting a good Dr too. Yes, please keep in touch about your treatment and progress, and I will too.

    How far is your Dr S from you?

    Best of luck for a full recovery!!!!!!!!!!
  10. Shalome1990

    Shalome1990 New Member

    I have to drive 17 hours!!

    It will take us 2 days. 10 hours the first day, and 7 the next. I hate driving!! Well, I don't like being in the car for so long, but I don't like other drivers either!!

    In March, do you think it will be snowing in PA? My daughter wants to see snow so badly!! :)
  11. Nanie46

    Nanie46 Moderator

    Hi,

    That's alot of driving, but worth it if you can recover. My LLMD's office told me I would have follow-up appts every 4 weeks until I'm stable, usually about 6 months, then less often.

    How often will you have to drive all the way to PA?

    It is possible that it could be snowing in March, you just never know. I'd send you some snow in the mail except that it would just be water til it got to you! lol.
  12. Shalome1990

    Shalome1990 New Member

    They said we would have to come back every 3 months for the first year, then every 4 months for the second year, 2 times the third year, and once every year thereafter, unless we were having really bad issues.

    It is a lot of expense, and we really don't have the money at all, but we are just getting worse here. I can't tell you how much money I have spent trying to cure my "chronic fatigue/fibromyalgia"!!!

    We live day to day, honestly. I am hoping that tax money will pay off our CC so we can put the gas, hotel, and food back on the card..... :(

    But, I am still looking forward to seeing a real LLMD. Then I might be able to go back to work, which would be soooo worth it!!
  13. Renae610

    Renae610 New Member

    I heard there's a good clinic near Atlanta, GA. I'm checking that out because I know of 2 gals who were VERY sick and almost better now!!!
  14. Shalome1990

    Shalome1990 New Member

    Hey, how are you? Long time, no talk too!!!

    Can you tell me about the clinic when you find out? I have a doctor in Marietta GA right now. That is like 18 miles from Atlanta.

    Let me know, ok???!!!

    Thanks,
    Shalome