kat0465 and others: lyme information

Discussion in 'Lyme Disease Archives' started by Nanie46, Mar 4, 2009.

  1. Nanie46

    Nanie46 Moderator

    Hi kat0465,

    Igenex lab in California is constantly developing updated testing methods to stay at the forefront of diagnosing lyme and other tick borne diseases.

    The experts agree that testing should be done at a reference laboratory that tests for ALL bands on a western blot. That would be Igenex lab. www.igenex.com

    Igenex tests for these bands on IgG AND IGM: 18, 22, 23-25, 28, 30,31, 34, 39, 41, 45, 58, 66, 73, 83-93.

    Other labs do not test for all bands. They usually test for 10 IgG bands and only 3 IgM bands.

    That is incomplete testing. These labs leave out some bands that are very species specific (meaning you would only make antibodies to these proteins if you were exposed to the borrelia burgdorferi bacteria).

    The experts agree that all species specific bands must be included in a western blot.

    In addition, Igenex developed their testing methods using many different species of borrelia bacteria. Other labs used only a few species. This means that many cases of lyme will be missed because the test did not detect that species that the person is infected with.

    There are many species of Borrelia bacteria that differ by geographic location around the US and the world.

    Take a look at your previous western blot and see how many bands were tested for on the IgG and the IgM.

    Then there is the problem of "reporting criteria". The criteria that these other labs use to say if the test is positive or negative is not meant to be a diagnostic criteria.

    The CDC developed that reporting criteria many years ago. It even says on their website that it is for surveillance purposes, and not diagnostic purposes. It is flawed according to the experts, since, for one, the criteria does not report all bands...leaving out some very species specific ones.

    I highly recommend you do not waste time or money on testing from other labs...and don't waste any money on a lyme screen/titer. The experts say it is worthless.

    I would get an Igenex western blot IgG and IgM which are test #188 and #189 on their patient test request form. You can call them and get a free test kit sent to you to take to the lab on a Mon,Tues,or Wed since it is 2-day fedex'ed to Igenex.

    The test must be prepayed and can then be submitted to your insurance.

    Then get a copy of the test. It can indicate lyme even if the overall interpretation of the test is negative....that's a reporting criteria. The results must be reviewed band by band by a LLMD according to the experts info on how to read a western blot.....see these 2 links....

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

    on page 7 of the above link, Dr B discusses western blot results in an excellent way.....and....

    http://www.publichealthalert.org/Articles/jamesschaller/western%20blots%20made%20easy.html

    the above link is to an article "western blots made easy" and is excellent.



    It is also very important that lyme is a clinical diagnosis. It is not based on just a lab test. It is made according to a patient's history, symptoms and supported by labwork.


    Lyme is a bacterial infection (Borrelia burgdorferi)...a spirochete that is the most complex bacteria identified to date. For this reason, do not get hung up on names. I was hung up for years thinking I couldn't have lyme because I knew I had fibro.

    I knew for sure it was fibro because I had read extensively about it over the years and I fit the description to a tee.

    The big question is what caused it??? Something causes a chronic fatigue syndrome or a fibromyalgia syndrome. An infection is a common cause. Other infections should also be ruled out, such as parvovirus B19 etc.

    Since Dr's have not bothered to identify the cause of your illness they tell you there is nothing they can do except treat your symptoms! I was not satisfied with that answer. I knew there was a cause. All along I thought it was viral in my case. It turns out it was bacterial.

    I think it confuses people that lyme is called "lyme". Lyme is a town in CT where the disease was first noticed in a large pediatric population. Think of it as a bacteria only. That is why it should be considered as a possible cause of fibro or CFS.

    Borrelia burgdorferi infection (Bb) can also mimic other illnesses such as MS, lupus, Rheumatoid arthritis, Alzheimers, Parkinson's, ADHD, autism, psychiatric disorders, and others. It is called the "New Great Imitator".

    It is possible to have a positive ANA with Bb infection.....here's one link to read...

    http://tinyurl.com/b8bgf5


    In section #18, page 7, of the following paper, it states "The clinical features of chronic lyme disease can be indistinguishable from fibromyalgia and chronic fatigue syndrome. These illnesses must be closely scrutinized for the possibility of etiological B. burgdorferi infection."......see link below...


    http://www.ilads.org/files/ILADS_Guidelines.pdf


    There is also alot of other important info in that paper about clinical features in section # 18, testing limitations in section #16, seronegative lyme #17, new chronic lyme presentations #14, failure of a short course of antibiotics #11, symptoms #9, a problem of definitions #4, and the need for new guidelines#3, etc.

    I am also going to provide links to some other really fantastic information. Take your time and read through it. The more you learn the better.

    An article titled "Fibromyalgia, chronic fatigue syndrome and lyme disease".... link below....

    http://www.canlyme.com/fibrocfslyme.html


    An article called "Quest for a diagnosis"...link below...

    http://www.publichealthalert.org/Articles/laurazeller/questforadiagnosis.html



    An article called "New Ideas about the Cause, Spread and Therapy of Lyme Disease"..link below...

    http://www.samento.com.ec/sciencelib/4lyme/Townsendhowens.html


    I know that is alot of information, but it's all important.

    I think it would be worth your time to go see the LLMD close to you. Other Dr's do not know how to recognize Bb, properly test for, interpret results of testing, diagnose or treat Bb.

    There are also some very important tick borne coinfections that are very common. They must also be ruled out by a skilled LLMD....Bartonella, babesia, ehrlichia, anaplasma and other.

    It is common for people to have Bb and at least one other of these coinfections that add to the symptoms, and complicate diagnosis and treatment. Again, only a skilled LLMD will understand these illnesses.

    Good luck to you, whatever you find out, I hope you get answers so you can actually treat the cause of your illness and recover.





  2. kat0465

    kat0465 New Member

    you pretty much answered all my questions, i think i'll be seeing the LLMD. from what i've read, it's worth the price to pay to just see whats going on for sure. i can remember being bit by ticks as a child, and if memory serves me correctly, i was sick from then on.Unfortunately, i wasent cared for well as a child and can remember having high fevers and just being left like that, it's a wonder it didnt kill me.
    although my fibro Doc is great,i'll be seeing the doc in La for this testing. thanks again for your time, i sure appreciate it!!
    Kat
  3. Nanie46

    Nanie46 Moderator

    Hi,

    You are very welcome. Your history of tick bites makes it very probable that you have lyme and other coinfections.

    I am glad you are going to see the LLMD. Please keep me updated.

    Maybe you will also have the hope of recovery.
  4. munch1958

    munch1958 Member

    Why is the main board being so picky about posting anything to do with Lyme on the main board? I've had many a post deleted. If the info isn't there people are not going to know what the root cause of their illness is! It will never ocur to them to look into LD. Have you complained about this?
  5. Nanie46

    Nanie46 Moderator

    Hi,

    I feel your frustration!!!

    I think the only reason that a "few people" have a problem is just because there is a separate lyme board. They simply do not get it though, that fibro and CFS are syndromes that have a root cause which can be bacterial, viral, etc.

    It's amazing how many people will be stuck forever with their FM or CFS diagnosis with no hope of real recovery since "the cause is unknown".

    I have complained that a few people should not be allowed to cause others' posts to be deleted just because lyme is mentioned as a possible cause of their problem.

    I have explained that all possible causes must be available to people to consider, and that people will not know enough to go to the lyme board without the information in the first place.

    The moderators say that first it was the "mold wars" and then the "lyme wars". I say it is not a war at all except for the few people who purposely post argumentative/negative replys allowing the post to get "out of control". They also hit the "report this post as inappropriate" button as if we are discussing pornography or something. It's ridiculous and juvenile.

    Please feel free to complain also.