Igenix Lyme test negative---but ?

Discussion in 'Lyme Disease Archives' started by grace54, Apr 18, 2007.

  1. grace54

    grace54 New Member

    just received my results. Thought I would be relieved but the indeterminates have me wondering as Igenix says they indicate clinical significance and recommend retesting in 4-6 wks. Here are my results. Any comments welcome, Thanks

    Igenex IGM result -neg
    CDC/NYS results- Neg
    18kda-
    22kda-
    **23-25kda-
    28kda+
    30kda+
    **31kda IND
    **34kda-
    **39kda IND
    **41kda+
    45kda -
    58kda +
    66kda -
    73kda -
    **83-93kda -
    Igg results Negative

    all - except
    **31kda IND
    **41kda +
    58kda+
    [This Message was Edited on 04/18/2007]
  2. mollystwin

    mollystwin New Member

    Ugg! I think with one more IND or + on a double starred band and they would have said positive!!! I think these results don;t tell you for sure that you don't have lyme. My doctor says that if your immune system is low, you may not have antibodies to the bands, but it doesn't mean you don't have the bacteria. Someone with +++ in more bands isn't sicker than one with hardly any, their body just produces more antibodies.

    I hope someone else comments on these results too because I am not an expert, but I think some LLMD's would treat with a result like this. Maybe you should show these results to a LLMD to see what they think??

    There is a new test coming out that tests for the antigent not the antibodies, so it should be more conclusive. I think this test is now available, but I have not heard of anyone with experience taking it. Maybe there is hope for future testing.

    I'm sorry you don't have more definate answer. Good luck!!!
    [This Message was Edited on 04/18/2007]
  3. grace54

    grace54 New Member

    You know how we are with questionable things, we like to be assured one way or the other. When we suffer like we do it is nice to eliminate all we can.
    I have read some stuff by some leading Lyme DR's and they will treat with one positive band. If I would have had one more double * band instead of indeterminant the test would have been positive.
    I will rest on this for a while and decide if I will retest. I just learned the new Florida lab is covered by Medicare as Igenix is. They havn't changed their web-site yet to note that though.

    I thought the Dr that sent in my blood sample was Lyme literate but he is not so I don't think he would treat me as his opinion was that I don't have Lyme. One day at a time with this stuff :)

  4. grace54

    grace54 New Member

    No CD-57. I should know what it is but I don't
  5. bunnyfluff

    bunnyfluff Member

    by the test that checked for the Lyme DNA and it was still neg., but I still DO have Lyme!! It can give a false neg if you have ever used Abx since you have gotten Lyme~ you can have it since you were a kid and have it activated by virus, a car accident, stressors, etc (kinda like CFS?!?).

    I went to a Holistic D.O. who is a microbiologist who looked at my blood *live* on the slide with me, and we saw the Lyme. Try taking the Samento and see if it helps. You'll know in a week if you have Lyme or not.

    ALL of my joint pain is already gone.....I have struggled with it DAILY for 6 years!!! My brain fog had been so bad I could no longer remember my own address! I have energy again....I can't tell what a difference this Dx has made in my life!

    I finally feel like I have gotten the answer. I know that the tests will tell you that you do not have Lyme, they told me that too. But I had it all along. I'm here to tell you that I think CFS and FMS are a myth. They are just Dr's and patients who stop looking for answers.
  6. jarjar

    jarjar New Member

    I just bumped up Chootiks post on reading lyme test. I see the same lyme doctor that is mentioned in the post. He would be treating you for lyme with your results since it is also based on clinical diagnosis. All your cfs or fm symptoms along with a test result like that would be a red flag for a lyme doctor. Have you shown these results to a lyme specialist? If not you need to.
  7. grace54

    grace54 New Member

    Yes I read that and it is interesting. I don't have a Lyme DR in my area so I doubt if anyone would treat me based on the negative results.

    Bunnyfluf. that is an interesting account of your Lyme and i t inspires me to not give up.In fact I am cosidering treating myself with Samento. I should be able to see if it is helping or not as the ABX's really tear me up.

    It remuinds me how dificult this illness is and how we have to be our own advocats
  8. mollystwin

    mollystwin New Member

    Build up slowly adding a drop every day or so. The herxes can kick your butt! But then you know it's working!
  9. grace54

    grace54 New Member

    Thanks for the tip you are very helpful. I forgot to ask how you were doing with the Lyme thing, are you herxing and all that good stuff. Hope you get better:)
  10. mollystwin

    mollystwin New Member

    Yes, I've been herxing and all that good stuff. My candida is flaring due to abx as well. I hope to get that under control now that I've had my mercury removed.

    I have good days and bad days. Still working, but only two days a week when I am able to.

    Please keep us posted on how you are doing. And best wishes.
    dar
  11. munch1958

    munch1958 Member

    I saw Dr. C yesterday (the author of Chootik's post on how to read the WB). I am Igenex negative but I now have an official diagnosis of Lyme. It ONLY took $100,000+ and 6 years from the tick bite with a baseball sized rash to get this diagnosis because there is NO LYME IN ILLINOIS.

    Doctors forget that I have hiked, camped and traveled on a motorcycle to WI, IN, MN, IA, WY, MT, MI, FL, NY, SD, ND, NB, CO, KS, OH, PA, MO, AK, Ontario, British Columbia and Alberta and many states in between over the past 15 years. Some of these states are highly endemic.

    My results are very similar to yours. IMHO, repeating the test is pointless unless you need a positive outcome for your insurance company (or Medicare) to pay for treatment. Try finding a LLMD in your state. Most of them are cash pay but don't let that stop you from getting treated.

    You may want to contact the Michigan Lyme Disease Association. They were very helpful when I was searching for a doctor in Illinois:

    MLDA
    35431 Brush St.
    Wayne, MI 48184
    1-888-784-LYME(5963)

    Dr. C. would like to see Igenex fold bands 30 and 31 together so it would read **30-31 because 30 and 31 are a variant of the same outer surface protein A. If they had done this I would be IgM positive.

    He also said that any kind of reaction on band 39 is a long standing Borrelia infection (1 year +). I'm IND on both IgM & IgG. I'm also IgG positive for band 58. Note it's one of the bands on the CDC/NYS criteria. Some doctors think it's important while others say it's meaningless. The ones that do think it's important says it's a heat shock protein the allows the Bb to survive at high temperatures.

    9 cross-reactive for Borrellia (Bb)
    12 specific for Bb
    18 unknown
    20 cross-reactive for Borrellia
    21 unknown
    22 specific for Bb, probably really the 23/25 band
    23-25 outer surface protein C (OspC), specific for Bb
    28 unknown
    30 unknown; probably an outer surface protein; common in European and one California strain
    31 outer surface protein A (OspA), specific for Bb
    34 outer surface protein B (OspB); specific for Bb
    35 specific for Bb
    37 specific for Bb
    38 cross-reactive for Bb
    39 is a major protein of Bb flagellin; specific for Bb
    41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
    45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis)
    50 cross-reactive for all Borrellia
    55 cross-reactive for all Borrellia
    57 cross-reactive for all Borrellia
    58 unknown but may be a heat-shock Bb protein
    60 cross reactive for all Borrellia
    66 cross-reactive for all Borrelia, common in all bacteria
    83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
    93 unknown, probably the same protein in band 83, just migrates differently in some patients

    You could also try the protocol from Stephen Harrod Buhner's book (ISBNs0970869630) Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections. I was able to borrow this book from the library. The herbs he recommends are andrographis, Cat's Claw, Revesterol and Smilex (Sasparilla). The average price for each bottle of herbs was about $10 or less.

    [This Message was Edited on 04/20/2007]
  12. mollystwin

    mollystwin New Member

    Great advice Munch. I'm so happy you are getting treated and by such a good doctor.

    Grace, my doctor is in Romeo Mich. I know you are up north, but you used to drive to Troy, this is not much farher. If you want more info, let me know. You could at least fax him your results or talk to him over the phone to see what he thinks.

    The Mich lyme association is also a good source. My sister talks to them at times. They have a website you could check it out to see what they think as well.

    Good luck and God Bless!!
  13. grace54

    grace54 New Member

    Thank you all for the good info. From my research I have read that bands 30-31 are the same so that would have made me positive also.

    I have prayed for answers and some healing and I seem to be still moving towards the Lyme angle of this fibro/fatigue stuff. I really won't be content until I treat it.

    I would like to get a cinventional confimation for all concerned- DR's , Ins. etc.

    I talked to a lady friend that has Lyme,in fact her husband and son also have it. She has treated hers with cats claw and a couple other things. She feels she is mostly over it and was treated by a DR who had it as well as his wife. She said one of the things that helped the most was the Orgone Zapper. I have heard of others on here that use it for infections of all kinds.

    I believe my next step is to have my DR retest with the Florida Research-Bowen labs. I have heard their procedure picks up more Lyme than others and now they take insurance plus reuslts are available within 72 hours.

    It seems nothing is black and white with these DD's. I guess I am grateful to be able to pursue a diagnosis, we are our best advocates.One thing I do know is that it makes things easier to have others who support and encourage like we have here.:)
  14. munch1958

    munch1958 Member

    I faxed my Igenex WB results to Dr. C in Springfield, MO with a little note of explanation and my phone number. My note said I used to have a photographic mind but it's run out of film. Sad but true!

    Based on my NEGATIVE results his office called back and said they would treat me for Lyme. They also said there was no need to repeat the WB because they would gather all of the info they needed to make a clinical diagnosis when I came in for the office visit. They told me to go back on ABX if I had any left.

    If a WB shows even ONE significant Lyme antibody most LLMDs treat for Lyme. Dr. C did a study of 700 Bb patients and found that 97% got better with long term antibiotics with just one positive band! I like those odds.

    Of course, I liked FFC's treatment stats before I went but quickly realized that they know next to NOTHING about Lyme. It is my belief that those that do not get well on their protocol have infections that they missed.

    I've had CF/MCS since 1981! I have done just about everything and have improved as far as I can go. I've done the food allergy rotation diet. Candida treatments. Antivirals. The Krebs cycle (mitochondrial support). Many detox regimens and nebulizing glutatione. I've titrated up on T3 and maxed out on hydrocortisone. These things work for awhile but I crash.

    According to the letter I received from the FFC doctor treatment is toxic so she will only treat patients for Lyme if they are Igenex positive. The first paragraph of the letter says the test stinks. Then they used it to justify taking me off of Doxy. Quite a double standard!
  15. grace54

    grace54 New Member

    Thats interesting about the FFC and Lyme. I was never suspected of any infections at the Troy, Mi center. It was from the members on here encouraging me to check for Lyme that I got motivated to look into it.

    I even mentioned to the DR recently that they need to check more patients for lyme as I had heard they were missing some. She was surprised I said that but I thought it was important. I didn't mention that I was being tested.

    With the short time I have been researching Lyme I can see many DR's are not well educated on the subject. But I am convinced that the way these bacteria are able to conceal themselves under the radar, If I was a DR. treating fibro/fatigue I would be remiss to not check all my patients as I have read too many stories of negative test results and years of suffering before someone figures out Lyme is present.

    That is another reason I want a positive diagnosis so I can educate a few DR's that have dismissed me for years. That idea of faxing a DR is something I will look into. I am convinced I would be treated by a good Lyme DR at this point but the way I am feeling at this point it would be tough driving as far as I would have to, but maybe I wouldn't have to show up to be treated, maybe my willing Dr up here would treat me useing another's protocol. I apreciate everyones feedback, it's not easy being our own DR:)
  16. mollystwin

    mollystwin New Member

    Munch went to the same FFC that we did in Mich. We both sent them a letter explaining why we were not returning and that we had lyme. Dr. M then sent us almost identical letters as why we didn't have lyme and that we did not understand it.

    She never even saw my results. Mine were definatly positive, said so on the bottom of the test results. I sent another letter saying so and encouraging them to use ignenex, but they won't. I know a current new patient who is there who asked for one. Dr. M told her that Ignenex won't do a test unless a quest shows up something positive. I thought maybe my friend misinterpreted the dr, but another person said the same thing!! I heard about this from the postings on the mich lyme board.

    If it turns out you do have lyme, which I'm pretty sure you do, will you notify FFC? I think it's really important to let them know because they are misdiagnosing many patients. And when they do get a lyme diagnosis there, they are not getting proper treatment. The Michigan Lyme Assoication has been notified of this and has stopped referring patients there. I'm just worried about those who are not aware of lyme and don't get a proper diagnosis.

    I feel very guilty because I was interviewed by Detroit Free Press last fall and in the article they mentioned the FFC. As a result of that interview, many people have made appointments there and have contacted me about it to thank me for the article. After what I've been through since Fall, I would never recommend anyone go there. I'm just hoping they get thier act together about lyme so they can help more people.

  17. grace54

    grace54 New Member

    You bet I will notify FFC from the top down. When I mentioned to the Dr that they might be missing lyme patients she said not down here we dont miss any, .So I guess the dR wont admit you have lyme yet. I am seeing the familiar Dr. stubborness and ego again. This is the kind of attitude that allowed us to suffer so long when DR's dismissed our fibro/fatigue.I have a sense that the DR.T protocol is not being followed by everybody.

    I wouldn't feel bad about referring anyone to the Ffc's.As we all know their testing can pick up things other DR's miss and they do help many people. If people like us voice our concerns to the right people they might change their policy.Also as DR T says even a blind squirrel occasionally finds acorns meaning they have a good chance of stumbling onto a cause of our illness simply by chance.I think you did a good thing.

    I know in my case I didn't get any help from the many DR's until I went to the FFC. They surely are not perfect but I expect they will get better with time. I'm glad you contacted them, keep up the good work:)

  18. munch1958

    munch1958 Member

    Grace: I read on another thread that you used to live in upstate NY. My sister lives in Corning. I agree it's a beautiful area but I'm partial to places where my cell phone doesn't work.

    If you got many insect bites as a child too who knows what bit you. I was a heathen child that spent all of my time barefoot and semi-clothed outdoors. I've had times where I had so many bite marks it looked like I had the chicken pox. Insects just LOVE me and the bite marks swell up.

    Have you looked at the CDC's interesting but pointless map? http://www.cdc.gov/ncidod/dvbid/lyme/riskmap.htm

    This is based on CDC reporting criteria. Everyone estimates that there 10-20 times more cases of Lyme that are not being diagnosed. I'm certain people like me with negative tests are not showing up on the map! I do sense a cover up because some of these areas get a lot of tourist dollars.

    Did you get an infection panel at FFC? I think it's crazy that their policy is to run the Quest WB first. Band 41 was positive on my Quest test which is how I got the Igenex WB. That's almost as bad as the two tiered testing with ELISA followed by the WB. No wonder we can't get a diagnosis!

    The doctor didn't even check with me to see if I herxed on the Doxy she prescribed after the Quest came back with just one positive band. In the letter she sent to EDUCATE ME she brags about attending conferences with the owner of Igenex and other ILADS board members. Why isn't she using the ILADS point system? I score 12 points or better.

    POINT SYSTEM
    . Tick exposure in an endemic region 1
    . History consistent with Lyme 2
    . Systemic signs & symptoms consistent with Bb infection
    (other potential diagnoses excluded):
    . Single system, e.g., monoarthritis 1
    . Two or more systems 2
    . Erythema migrans, physician confirmed 7
    . ACA, biopsy confirmed 7
    . Seropositivity 3
    . Seroconversion on paired sera 4
    . Tissue microscopy, silver stain 3
    . Tissue microscopy, monoclonal IFA 4
    . Culture positivity 4
    . B. burgdorferi antigen recovery 4
    . B. burgdorferi DNA/RNA recovery 4

    POINT SYSTEM DIAGNOSIS
    . Lyme Borreliosis Highly Likely
    - 7 or above
    . Lyme Borreliosis Possible
    - 5-6
    . Lyme Borreliosis Unlikely
    - 4 or below

    Since I got the two $100 coupons from the FFC, I have asked for a treatment plan. I want to see what their protocol is and compare it to the one I got from Dr. C.

    My chart is on the doctor's desk for review. I also faxed medical records showing a physician documented insect bite. I don't think she'll back down about misdiagnosing me unless she has more info. I also let them know I flunked the neurotoxin test used at Dr. C's office.

    I'm lucky because my husband remembers what I used to be like before the tick bite in 2001. He drives or flys me to my appointments. Convincing him to go to MO after 7 trips to Troy was not easy. Ater my appointment with Dr. C, we both walked out of feeling like there was hope for a cure.
  19. munch1958

    munch1958 Member

    Hi Dar!

    You can't take back your last breath! I keep reminding myself of that. I too feel guilty about recommending the FFC. I'm tempted to delete some of my old posts on the fibro board.

    I don't delete them because maybe the FFC will help just one person who has plain old garden variety CF or FM. That would be like deleting someone elses hope.

    Everyone is different and some people have been helped. What works for some people does not work for others. We just weren't in the lucky percentage.

    My estranged older brother was planning on going to FFC for his fibro. I was responding to the treatment and looked like a different person last spring. He was going from doctor to doctor because no one could find out what was wrong with him.

    I sent him the info on FFC and he realized he had fibro. His doctor put him on Elavil and he got some badly needed sleep. After digging into his medical history, I quickly realized that he's got Lyme not fibro. Now he has to keep upping the dose of Elavil and he's gaining weight like crazy. He's looking for something else but won't be going to FFC.

    His fibro started after a hunting trip in WI. He had 3 negative tests for Lyme that were probably done by Quest.
    The tests were done while he had a rash the size of a football that he describes as being like prickly heat. He probably was not positive since he had just been infected.
    If he had the rash he's got Lyme.

    I was able to spot a rash that looked just like my rash in Dr C's office. He had two full size posters of pictures. Every one looked different depending on the person and location of the bite. Some don't even look like a bulls eye.

    My mother's fingers are so twisted with arthritis that the top joint is permanently curled. She can barely walk. I've been bugging her about asking her doctor for ABX to see if she improves. She was tested for fibro by a rheumy but doesn't have any tender points.

    I'm starting to wonder if she was bit by a tick in the Ozarks where she used to live as a teenager. My entire family has such lousy health. Could we have gotten something in the womb?

    I went on a trip to the Ozarks when I was 11. That winter I developed a rash that looks very much like acrodermatitis chronica atrophicans. This rash was supposed to be eczema but it was never cured by prescription hydrocortisone. It did go away when I began taking ABX for chronic ear infections.

    It almost sounds crazy but I think I was bitten more than once. The second tick bite I got caused the brain inflammation episode. Encephalopathy is supposed to be a late stage thing. I've got to start reading Lymenet more.

    My older sister needs a knee replacement because her knee has no cartilage left. My younger sister almost had surgery on her neck last year. It's sore, stiff and she has headaches. She's getting acupuncture and chiro treatment because her insurance wouldn't pay for surgery.

    My youngest sister has endometriosis like me. She keeps getting skin cancer on her face and has had 4 surgeries including plastic surgery. On top of the 3 endo surgeries she had she's very frustrated.

    My younger brother has bad asthma, GERD and allergies. I think he's got fibro too. I've thought for years that we've all got the same thing (migraines, neck and joint pain, GERD, eye problems, and insomnia). 6 out of 6 siblings with questionable symptoms.

    I've been thinking about your theory about the Bb lying dormant until menopause or another stressor comes along. It makes sense! I'm going to send you and Molly more details about my Dr C visit. I'm dying to go ride my bicycle.
  20. mollystwin

    mollystwin New Member

    Wow, your family sounds like a bunch of sickies, just like ours!!

    Molly and I were talking yesterday and we were wondering if perhaps lyme is like EBV and mycoplasmas and Herpes virus and all those stealth pathogens. Maybe everyone gets exposed, but only those who have weaker immune systems get sick. Just a theory we were discussing.

    Thanks grace and munch for making me feel better about recommending FFC. I hope they do help those that went because of the article. I don't know why dr m is so stubborn! I just heard again today that she will not treat a husband of one of her patients who has a positive ignenex because she says he doesn't have lyme! Igenex says it's positive and she says no! Go figure!

    I hear these things on the Mich lyme board. Mich FFC is getting a bad rep for their lyme treatment. I really hope they shape up soon because they could be helping so many other lymies that really need good doctors!
    [This Message was Edited on 04/22/2007]