LYME question please - help:(

Discussion in 'Lyme Disease Archives' started by ladybugmandy, Jul 16, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i am new to this board. i always post on the CFS boards because that is what i have. i contracted EBV and probably HHV 6 and have been sick ever since.

    all my tests show that i probably have a virus(es) and the antivirals are helping somewhat.

    i have been tested for lyme by 2 specialists, once at lapcorp and once at igenex. both were negative.

    i really really don't think i have lyme. i never camped or did anything like that. i do not remember any tick bites.

    the problem now is...that i am going to NYC to see a doctor who i thought was going to give me a spinal tap and look for HHV6, which is what i wanted. but he looked at my records and is now saying i had possible lyme exposure! i dont see how thats possible. my tests were always negative.

    i found something in my old results that looks like this:

    Abs. CD8-CD57+ Lymphs 42 LOW reference interval 30-360

    and also

    CD19+ Lymphs 27.1 HIGH reference interval 3.3-25.4

    does anyone know what this means??

    thank you
    sue

  2. Nanie46

    Nanie46 Moderator

    Hi,

    I can't specifically address those lab results, but I think it would be wise to consider lyme and associated coinfections.

    Lyme is never, never ruled out by just a negative lab test. This is a mistake that Dr's make all the time.

    Also, the official result of your western blot can be CDC or Igenex negative, yet the band results can indicate lyme. The positive or negative result is only a measure of whether that patient's result should be reported to the CDC.....it is NOT a diagnostic criteria.

    Plus, many lyme patients have never had an officially positive test.

    I can't remember if you have already posted your past western blot results from Labcorp and Igenex. Is it possible for you to post them?......would need to see each band result.

    For 21 years I only considered viruses as the cause of my illness. I took antivirals also.

    I wish I had considered the bacteria borrelia burgdorferi as a cause long ago.

    Ticks can also be found in grass, gardens, trees, leaves, etc...not just in the woods. Pets can easily bring them in the house....so can a Christmas tree.

    Ticks are infected by mice. The mice carry them around. Then they find their way into the grass, etc and can be moved around by deer.

    It is probable that other rodents and small animals can also carry lyme and carry ticks around.

    No one is immune from the chance of lyme and common coinfections.

    We often have more than one infection.

    I may have given you this info before, but if not, you should read this paper.....


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    I do not remember a tick bite or a rash...and neither does my daughter.

    I never even gave ticks a thought until I started researching lyme in Oct 2008.

    From what I have read and seen in people that I know, I believe that many people are infected with lyme, bartonella and babesia.

    Usually they just get individual diagnoses like migraines, arthritis, insomnia, FMS, CFS etc and never discover the real cause of their illness.

    Have you posted any of your questions on lymenet.org's Medical Questions board?

    Forgive me if we have already discussed this, but I can't remember who all I have referred there.

    There are alot of intelligent people on lymenet.org who can provide information.

    I hope you get some real answers and recover.
  3. victoria

    victoria New Member

    Tests for Lyme and other stealth pathogens (including viral) are not the most reliable. If he wants to do a Western Blot, make sure he does it thru IGenex as they specialize in WBs.

    Lymenet is a great resource, also please check the sticky up at the top for official sites and others ... there are lots of sites with the best info, such as ILADS and CanLyme.

    And true, you don't have to go camping or walk in the woods. Deer are so rampantly overpopulated, that despite the findings in one place that a certain type of mouse was the primary vector, certainly deer are at the top of the list. One island offshore of New England culled the number of deer, and the number of lyme cases dramatically dropped.

    Given that deer are commonly sighted nowadays everywhere... and the ticks drop onto other animals as well-- including birds... I don't think you have to go camping or very far 'afield' to be exposed.

    I also wouldn't doubt you have HHV6 etc. Unfortunately most of us have more than one 'bug' and/or type of 'bug'. Lyme and other similar infections can take years to manifest fully and/or show up on a test, if ever. I envy those who are definitely positive for some of these things on culture, yet have no symptoms. I wish they would study them!

    Please post back with the results, whatever they are?

    all the best,
    Victoria

  4. Renae610

    Renae610 New Member

    Each one of us is a "microbial soup". Blood tests are not always adequate to prove what microbes are affecting your health. The standard tests do not find some chronic infections.

    You could have been infected with lyme unknowingly because it can be transmitted in more ways than a tick bite, including passed on from your own mother or your spouse. By the time you had symptoms and were tested, your body had likely stopped making antibodies and lyme is hiding out in the tissues--so the tests are negative.

    We believe IgeneX is the best blood test, but if you are still confused, then find an alternative professional like Dr. J in KS who is trained in "energy medicine" and can detect the "frequency" of lyme, coinfections, HHV6, parasites, or whatever you have. He detected the frequency of a coinfection in my daughter that IgeneX had missed! Not only that, but he can counter those bad-bugs with opposing frequencies. He also used techniques to close gaps in my daughter's energy fields and she has energy to go now! He can find (with his energy diagnosing) which products, dosages, therapies and detox methods will work best for you. And in two weeks, my daughter is turning a corner toward wellness for the first time in 10 years. This is high level science and the doctoring of the future. Don't waste time and money on anything else.
    [This Message was Edited on 07/17/2009]
  5. maps1

    maps1 Member

    I Live in Toronto, like you, never been camping, like you, have been nowhere where ticks were known like you. I had exactly the same reaction to having lyme as you do. Please do not rule it out.

    I have HHV6, Epstein bar, CMV.

    I know you have spent a lot of money on treatment and gone through h*ll like the rest of us. If I am not speaking out of place I would recommend the following:

    - Read through Dr.Burrascanos treatment guidelines
    - Watch the video "Under Our Skin" (cried all the way through that one)
    - Take 10days or so of antibiotics (read in above treatment guidelines it improves the chances of positive Igenex tests)
    - Call Igenex for test kit
    - Wait ten days or so after finishing antibiotics and follow instructions in Igenex kit.

    I tested positive for lyme but as I did not believe it I decided to also test for co-infections a few weeks after the initial test. Out of the ten tests I came up positive for only one, Babesia but for me that was a big one.

    All my distress with rib pain, ice cold, sweats over the years is babesia!! and of course plus lyme.

    Have not posted for quite a while as emotionally and physically very lost and exhausted.

    I was on 1 week of 200mg doxy then 3 weeks 400mg until I could not stand it anymore, 3 weeks off. Now two weeks 200mg and 400mg weekends.

    The reason for this is that I found a great doc in Toronto but had to wait 2 months to see him so have just been making do. I have seen him but no lyme treatment yet, which I understand as all he has in my file is the Igenex results.

    He took 14 viles of blood, testing for west nile, western blot lyme, babesia, bartonella plus the ontario governemt test for lyme, babesia, bartonella. Also cardiogram, full body bone scan and head MRI. The MRI is a long wait - November so going to ask to see him again without that result - if not I will look into cost of private MRI.

    He treats a lot of lyme and said he sees good improvement in a few months.

    It is only this week that I am finally getting my head together, I now know I have found my illness, I can stop fighting, I can stop experimenting and start moving forward. I am done with this nightmare, I now have a diagnosis and a treatment, the stress, anxiety and depression is gone

    I was so ill and drained I decided to do intravenous vitamins, once a week for four weeks, twice for the next month and then once a month. I have seen some major improvements from the doxy and probably the vitamins:

    - Rib pain has subsided to very manageable
    - Head a lot clearer
    - Abdominal pain gone 90% of time.
    - Everyday I see improvements my body actually seems normal (does not last but at least it is happening).
    - Babesia symptoms have gone but I don`t think it was the doxy and I am sure they will be back.

    Sue, you have tried so much you have nothing to loose and everything to gain.

    I agree with all above after being sick for so long how could we not get loaded down with all kinds of other things.

    I will be thinking about you and hoping that this might also be the answer.

    regards maps

  6. Renae610

    Renae610 New Member

    Can you ask the doctor who ordered those tests to explain what those results mean?
    Otherwise an LLMD should be able to tell you. I do know that the CD57 test is a measure of natural killer cells. In normal healthy people, it is usually over 200, but with chronic lyme disease, it is often well below 60. This is an important indicator, about how well your body is fighting off infection.

    Hope this helps.
  7. Renae610

    Renae610 New Member

    Good to hear your health is improving!