DX with CFS but believe is LYME. Test ranges have changed and need help

Discussion in 'Lyme Disease Archives' started by 2sic2mooov, Nov 20, 2008.

  1. 2sic2mooov

    2sic2mooov New Member

    I became sick about 8 years ago with symptoms they attributed to thryroid problems. I had a growth start to quickly increase in size even though thyroid levels were normal. They removed part of thyroid and 2 months later I got a "killer flu". They connected all of the symptoms to that flu because I crashed so hard after. (BUT did not remember i had symptoms 7 months earlier) . The docs did a lyme test just to be sure and it came back as borderline. I believe the count was something like 1.19 and you had to be 1.20 or higher to be positive. So, they put me on strong antibiotics for about a week and then redid the test just because it was considered borderline. It came back as 1.0 the second time and they said I was negative for LYME.
    I want to know if being on the antibiotics for those few days before the second test could have SKEWED the 2nd test?

    Now it is almost 8 years later and this spring my husband and I demanded another test just because i was in a HUGE flare and my husband is convinced I have lyme. This time the test came back I believe at .60, but this time I notice that the cutoff range for a positive is 1.0 or over. Somehow in the past 7 years the lab has changed the range for dx lyme with this test?
    If this is true, then by todays standards, the first test I had would NOW be considered positive and the second one would be borderline. (last one would be neg?). CONFUSED as all getout!!!

    On a post on CFS board a person believes she got her Lyme from her husband via sex transmission. Is this possible?

    Also, am wondering if others have been passed by for even initial lyme testing bc the doc thinks you live in an area that cant possibly be holding Lyme. They said, "you live in town and couldnt possibly have been exposed" But I lived on the edge of an out of town subdivision where deer drank out of our kiddie pool. I grew up on a farm, hunted myself, and even though I don't hunt often...my husband and son, and brothers do and they do always bring deer home.I am just wondering if docs are always so quick to make assumptions and that is how many people end up sick for years unnessessarily? And how many times do some people get testing that says negative result and then finally it comes up as positive? Can you bring in an old test result from years ago and compare to todays standard and get docs to look at that?

    Sorry am rambling, but I am really getting tired of the runaround! Thanks for any info out there!
    Eileen
  2. Pwr2Heal

    Pwr2Heal New Member

    Hi Eileen,

    What lab did your Lyme testing? It sounds like LabCorp or Quest which are not very accurate. I would recommend you having Lyme testing done by a Lyme expert lab such as Igenex (www.igenex.com). If your current doctor(s) won't order this test for you, find another doctor that will. You may need to find an LLMD (Lyme Literate MD). LLMD names are generally not published on the internet, but you can post on any Lyme board and ask people to email you privately with name of an LLMD in your area.

    Antibiotics often cause a MORE positive Lyme test result. I'm not sure if you need a particular kind of antibiotic or if a week is long enough to cause a borderline result to go positive, though. An LLMD can help with that.

    I believe that there are no studies that prove Lyme can be sexually transmitted, but many people seem to believe it's possible. Other bacteria can be sexually transmitted and I believe that Lyme can be found in body fluids, so I personally see no reason it couldn't potentially be sexually transmitted. Just because there are currently no studies to prove it doesn't mean it doesn't happen.

    Yes, it's very common for people to be told they couldn't have Lyme because they don't live in an area that has Lyme. This is another reason to see an LLMD as they don't say these ridiculous things but go by the person's symptoms and test results instead.

    And yes, it's also not at all uncommon to have negative test results that eventually come up positive. Often the more sick you are the less your body is able to make antibodies to the Lyme, so the tests checking for antibodies are negative. Once you start on some treatment (a few weeks of antibiotics, for example) your body may start to make antibodies to the Lyme and a subsequent test can be positive. This is common.

    I hope you are able to find a better, more helpful doctor who can help you determine whether you have Lyme or not and put you on appropriate treatment if needed.

    Good luck to you and best wishes, Amy
  3. 2sic2mooov

    2sic2mooov New Member

    I have been lost in this fight to find what we are convinced lives within me. And every year gets worse and worse. I am now having almost mini stroke like spells that only last a minute but are frightening. I am not even the same person I was a month ago.

    I did find the name of a doc in Wisconsin by going to the ILads group. But the wait to see the doc is 9 months. I am just so disappointed and getting deeper into a hole. I do have other things going on like some gastro stuff and also an H-pylori infection. They said antibiotics would treat it, but i got so sick on it. I wonder now if i was feeling the die off of some bacterium. My husband went into doc this weak and showed her lots of info we wanted to work on...she sent us to a Rhuemy doc siince they still think I have CFIDS. I am just bouncing from doc to doc gettin worse. I guess I wont get any real answers til the LL doc can see me and help us straighten it out.

    THanks for helping me try to figure out the antibody portion. Cant get that becasue i hear all talk about certain 'bands' in testing. Some day i will know the language unfortunately....
    Hope you had a good Thanksgiving!
  4. Renae610

    Renae610 New Member

    Could you possibly see the LLMD in MN?

    My daughter had no bull-eye rash. She had 3 Western Blot tests and one ELISA test for Lyme -- all negative. So I thought she only had CFS, until no treatments were working! I found the LLMD here. We didn't have that long of a wait to get in. She was diagnosed with CFIDS, FM, HHV6A, CMV, as well as Stage 3 Chronic Lyme (IgeneX Lab) and coinfections, several nutritional deficiencies caused by Lyme (SpectraCell lab), and RedLab was excellent in proving what no other labs could. An important test is the CD-57 to measure your killer cells; I hear that this test is now thru LabCorp. But you can get this all done with the LLMD in MN. Don't go deeper in the hole -- you deserve help!! Come over the border!! <smile>
    [This Message was Edited on 11/28/2008]
  5. munch1958

    munch1958 Member

    The Elisa test misses 85% of all cases. This was done on purpose at The Dearborn Conference. Please read the section on "Failure of Testing" on Lymecryme.com. You can read about the Dearborn Conference there too. This describes in great detail why no one is allowed to have Lyme Disease.
  6. kellyann

    kellyann New Member

    I am reading one of the most informative books on lyme disease I've ever seen. It's called "Cure Unknown" by Pamela Weintraub. I wholeheartedly suggest you read it. I am sure you can find previews of the book on amazon.com. Anyone can get lyme no matter where they live. As long as deer are around. My husband came in last night saying he saw two young does at the bottom of our driveway. My heart just sank. I can just imagine the disease spreading across my property. Yes, deer are beautiful creatures but I sure don't want them near me. Funny....when I first moved here I had planned to put out deer salt licks to atract them. Jeez.

    Kellyann
  7. FooDog

    FooDog New Member

    See the award winning film Under Our Skin, visit the web site www.underourskin.com

    Yes, there is a concern that Lyme is sexually transmitted.

    Lyme is not only only Borrelia cause by ticks bites, it includes a number of coinfections, babesia, bartonella, mycoplamas, viruses, bateria, etc. It may be that Lyme disease can be caused by a group of these infectious agents.

    The infections and inflammation and effects on the nervous system can possibly lead to Fibromyalgia, Chronic Fatigue, and other diseases. Or having one of these other diseases may be the reason why you can't clear the infections causing Lyme. It is a chicken and egg problem.

    ALS, MS, and other neurological diseases have been thought to have potential for Lyme to play a role. Harvard researchers found 70% of Alzheimer's patient brain tissue samples stored there tested positive for Lyme.

    There are a number of tests, you don't say which one. CD57, Western Blot, PCR? The problem is that tests are not always definitive, you can have a false negative.

    Lastly, it may be that not only tick bites cause Lyme, spiders and other insects are likely to carry a similar cocktail of infectious agents in their bite.
  8. Shalome1990

    Shalome1990 New Member

    I think my husband and daughter got my Lyme. I have had it for 20 years, not knowing and they are both experiencing symptoms, I just had them both tested, I will not know until 12-20-08, and I had both of their tests sent to Igenex.
  9. Shalome1990

    Shalome1990 New Member

    I have Lyme and Erichilosis and supposedly no where near "Lyme Country". I think I got it while I was a child in North Carolina. That is the only time I could have gotten it. That is why my health dept. wanted to know where I have lived because they were suprised, I am in Florida now.
  10. Howdedo

    Howdedo New Member

    Please view www.ilads.org; www.lymediseaseassociation.org; and lymepa.org.

    They have some really good videos you can view online at lymediseaseassociation.org and lymepa.org has a downloadable booklet that a lay person can understand along with a good checklist of symptoms. ILADS is international lyme and associated disease society and most lyme literate doctors are members of ILADS. I think all three sites have dr. burrascano's treatment guidelines.

    Hope this helps, but i noticed u had a lot of replies already.

    Bill
  11. mrdad

    mrdad New Member

    Sorry that you've been going through so much for so many years! CFS and Lyme are not
    necessarily, mutually exclusive. My belief is that people with Lyme most often (if not always)
    have CFS. It appears to me to be a symptom or of Lyme itself! CFS can be caused by many
    other reasons too, but seems to "fit well" here. CFS may have many other underlining causes.

    Huggles,
    MrDAD
  12. munch1958

    munch1958 Member

    http://i261.photobucket.com/albums/ii42/munch58/outcomesoflymeinfection.gif

    Some people get SLE (Lupus), some get Lou Gehrig's disease, some get MS, some get Alzheimer's. I think it depends on your genetic weaknesses or where the bacteria does the most damage.
  13. LISALOO

    LISALOO New Member

    I have the same issue. 9 months wait in WI. But even to get one in MN they put me on the wait list and that was 2 months ago. I called to ask how much longer, they said summer! That was for Dr. V
  14. Renae610

    Renae610 New Member

    Have you seen Dr. V before? If so, I think you can get in sooner.
    She was on medical leave, came back a couple hours a day to start, and now I think she's back full-time... so might be getting people in sooner?
    While you wait, I would strongly recommend that you see the Lyme-literate N.D. in the Twin Cities! His biofeedback is a great help! E-mail me for further information (see my profile for address). [This Message was Edited on 02/23/2009]
  15. Renae610

    Renae610 New Member

    Would you inform me, what were the results of the Lyme testing in December for your husband and daughter?

    Care about you and your family!!,
    ~Renae[This Message was Edited on 02/23/2009]
  16. Shalome1990

    Shalome1990 New Member

    Hi, nice to hear from you!!

    My husband is CDC positive for IGM on the Lyme WB. He is CDC and Igenex Negetive for IGG on the Lyme WB.

    My daughter, who is five, is negetive for both. However, on the IGM she had bands 31, 41, 58 show positive. And on the IGG she has 31 +, 41 ++, 45 +, 58 +. So, I am still going to take her for treatment and speak to the LLMD about her. Her Ehrlichia test showed IGG positive for Ehrlichia. I feel like she has both Lyme and Ehrlichia just like me.

    We leave this weekend for the big trip!! 17 Hours. But, I am so excited that I can't stand it!! I just want to make sure I am prepared!

    Regards,
    Shalome
  17. LISALOO

    LISALOO New Member

    No, I have not seen Dr. V before. But her wait list was shorter than anyone in WI. I called two weeks ago and that's when they said I'd still be waiting until ummer.
  18. Renae610

    Renae610 New Member

    Hi! I just sent you an e-mail! Hope it helps!

    ~Renae
  19. Renae610

    Renae610 New Member

    As I said before about your diagnosis after so many years undiagnosed, I now say about your husband and daughter-- It is GREAT to finally have the ANSWERS, knowing what is causing illness!!!! I pray safety for your travel this weekend and that the doctor visit will greatly benefit you all!! (where/who is this doctor, if I may ask?) I've heard from a few gals who have been recovering nicely from treatments at CHC (e-mail me if you want the name/location).

    Keep COURAGE and HOPE singing in your heart!! <smile>!!

    ~Renae