Hello Zena

Discussion in 'Lyme Disease Archives' started by mrdad, Mar 3, 2008.

  1. mrdad

    mrdad New Member

    I just read your reply to to David's Post. I indicated to
    him that I was diagnosed recently through a visit to the
    Igenex Lab in Palo Alto. I just started a 28 day regiment
    of Doxycycline via my N.P. If your would be kind enough to
    give me the name of your Doc, I'm in SF and may very well
    be looking for a Lyme Expert in the near future. My daughter,
    now at Grad Student in Portland is 30 y.o. who had been diag-
    nosed with Lyme while yet in High School. Early intervention
    was instrumental in her ability to lead a more "normal" life.

    Do you mind my asking if you are seeing Dr Stricker on Sutter St. in SF?? I just Googled his name and found his website.

    Regards,
    MRDAD
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    [This Message was Edited on 03/03/2008]
    [This Message was Edited on 03/03/2008]
  2. mrdad

    mrdad New Member

    I've also found a Specialist here in SF who was the Doctor to
    Amy Tan, the author "The Joy LucK Club" and other works.
    I found his name through a reference to Amy's website via a
    person on this one. I think it is important that we check
    the credentials and credibility of any person(s) and info.
    found here.

    Interesting to learn that they have determined your onset of Lyme in a confident time frame of your early youth! Igenex
    indicated that MY Lyme was "old" meaning more "than a year"
    but rather indeterminate beyond that. Curious as how they
    were able to determine the more "precise" onset time in your
    case? Maybe Victoria would have th e answer to this question
    as I would not expect you to know the difference either.

    Thanks Zena, my daughter is doing fairly well. She had
    choosen years ago to go on with her life and "ignor" the
    Lyme issue in her life. They caught it early, so the intervention meant a great deal. She has choosen a "wholistic" approach to her medical needs and it seems to
    work for her. (?)(?)

    I appreciate your reply and wish you all the best in your
    quest for "wellness".

    MRDAD
    [This Message was Edited on 03/05/2008]
  3. victoria

    victoria New Member

    says the only way you can possibly determine how long one's had it is either because of a)remembering a bulls-eye rash OR 2) by symptoms... as often it goes 'underground' without a rash and maybe not even flu-like symptoms.... and one can be symptomless for years until something (like other infection(s) or physical trauma) seems to galvanize it into starting problems.

    My son's LLMD, also considered one of the top LLMDs, told us there is a band on the iGenex test that can show if one has had it at least 2 years, which my son showed, sorry I can't remember which number it is right now... will try to find that reference.

    all the best,
    Victoria

  4. mrdad

    mrdad New Member

    Yes, I thought the answer was based more on memory than on science. Interesting that they can determine the band
    for age. I suppose that's how they determined mine was
    "at least a year" old. In reality, I believe about 30>35
    years much like Zena's Lyme background!

    Thanks again to both of you Girl's!
    MRDAD
  5. zena01

    zena01 New Member

    I had Osgoods Schlatters (sp) disease in both knees when I was 12. Bliewies article on lyme mentions Osgoods in that his patients with lyme from their teens had had a diagnosis of Osgoods - that was one of the things I read in that when to suspect lyme article that made me know I had it. Plus, my knees never really got well and I've had problems with them off and on ever since with too much bending, stairs, horseback riding, etc. When I complained my knees still hurt after I was "supposedly" well, the doctor told my parents that the Osgood's had ran it's course, she shouldn't be having any problems still, so basically I learned to shut up about it.

    I've had problems with my knees ever since. I guess lyme really likes the knees and it is one of the first places to start. I had no known tick bite. I did get Chiggars while traveling when I was 12. My family hunted, fished, camped. I used to help skin the deer they'd bring in and my brother and I even picked ticks off our sheep (heck, who'd heard of lyme disease?) I rode horses in the woods daily. I guess lyme is endemic now on the oregon coast and we spent a week there from age 4 to 18 and I've certainly went back. ALthough lyme became "known" in 1975, I guess they found it on a slide of mouse blood from 1895 so it's been around a long time.

    I had a very bad flu at age 12, also bad stomach problems than and for years, getting diagnosed with colitis at age 18/19 and had that problem until starting pain medication a couple years ago-great side effect by the way! (they said I may have or have had Bartonella from my Igenex test andt he stomach problems)

    I've had upper respiritory infections yearly or more often since childhood, at age 18/19 liver problems with no cause found and many other times over the years - (hepatitis scares with nothing further found), Costochondritis in 85/86? so 25?, feet pain what they call gelling phenomonem (sp) in 87 and on and on. Bursitis, tennis elbo, tendonitis, off and on and on entire life.

    Anyway, once home for a couple weeks after my first dr. appoint with llmd i called to ask about one of the supplements and asked if they had narrowed down how long I'd really had it and the nurse looked at my file and told me that based on my history, they think I was probably infected at the onset of my knee problems at age 12 and said something about my test results showing old infection. My theory? I was probably really was infected at 12--but that I've probably been reinfected -- who knows how many times perhaps the year I got fibro 2004??? My boyfriend since 2000 is a hunter and I used to go with him so am around dead deer and elk...(fleas and ticks abandoning ship) We also used to go to the coast a lot.

    Although he's not sick I think I want him tested. from the article I just read on this board I certainly don't want to get half treated and get it back!!!

    zena
    [This Message was Edited on 03/05/2008]
    [This Message was Edited on 03/05/2008]
  6. foggyfroggy

    foggyfroggy Guest

    I left you a message over on the other board - we live within a few miles of each other I think. Small world!

    Thanks for the name of your LLMD. Was he the closest you could find or did you consider others and decide he was the best option?

    Thanks,
    Gretchen
  7. mrdad

    mrdad New Member

    Victoria, thanks so much for your answer to my question concerning Lyme "onset" determination. It's helpful to the
    understanding of related things.

    Zena, your background explanation was both interesting and
    informative. I take notes on things I wish to research (i.e)
    "Osgoods" etc. The Chiggar bites, I assume, where received on
    the East Coast as it is my undertanding that they are not to
    be found on the West Coast. I was wrongly diagnosed with them
    until the Doc did some further research and determined they
    were "Buffalo Nat" bites on a trip to the Sierra! I still
    have the scars from the 'lil buggers!

    I'm sure Lyme has been around "forever". I suspect that "they"
    will find that it's not just the Tick transporting this
    ailment.(?(?) My daughter was a Certified Vets Assistant and
    she may have gotten the disease from one of the animals she
    attended. (?)(?)

    I have similar symptoms from an "unrelated" blood disorder.
    Hemochromatosis (Iron overload). A genetic disorder normally
    of Northern European origin. It can be detected through a
    simple blood test checking for iron levels. Doesn't hurt to
    have it looked for in your next blood test. It is one of the
    10 most common and least diagnosed diseases in medicine!
    As I mentioned, the symptoms are nearly identical to Lyme
    including fatique, brain fog, muscle and joint ache etc.
    This is why my Doc(s) where less than receptive to having\me tested for Lyme. So I did it on my own, thank God!

    I wish you all the best in your efforts to become well!
    I'm sure we will be in frequent contact and longtime friends
    on the Board!

    Have a Great Day!
    MRDAD
  8. victoria

    victoria New Member

    Isn't it amazing how so many doctors refuse to believe one might have more than 1 thing causing problems? Especially when symptoms are not fully resolving!

    IMHO, this is due mainly to health insurance providers' pressure and/or laziness on the doctors' -- and/or lastly, the pt's part.

    all the best,
    Victoria



  9. mrdad

    mrdad New Member

    I don't mean to interrupt your message to Zena, but a short

    question as to "ifin'" you saw my urging to get the Igenex

    test done as you may find a more determinate evaluation of

    your possibility for A Lyme connection in your illness.

    Your everyday contact with the horses and other animals over

    the years certainly points to a "definite maybe"! It sure

    helps to have "definition"!

    My Son is up your way visiting his Mother and Sissy in Port-

    land and Eugene! He MAY be dropping in for a little lunch

    to the Willamette on the way through!

    Huggles,
    MRDAD
  10. foggyfroggy

    foggyfroggy Guest

    You can interrupt me anytime my friend! I hadn't seen your post to me; I shall go rootle around and find it, but I have had the Igenex test - not once but twice!
    The first time they ran it I came up positive on a few bands and indeterminate on several more. My doctor at the Seattle FFC didn't feel that she was comfortable treating for Lyme as Igenex called me indeterminate. Of course, I've been lacking in determination my whole life ;-)
    The second test, taken just a few months ago showed only 2 bands indeterminate and no bands positive. Go figure! So now I'm thoroughly confused. The weird thing is that I was treated for Lyme by a 'healer' last year who 'reads' peoples' 'vibrations' and also looks at saliva samples. She said I had Lyme without a doubt (I had not suggested it to her either), and treated me with electrified water. Now, I am the worlds biggest sceptic, and have a science degree for a reason, but like everyone here I would eat ground glass with a spoon if I could just get better so I paid for a year of this. Very expensive. She now pronounces me healed of Lyme and says it will take a while for the nervous system to repair itself. Hmmmmm. I have all the same symptoms as ever. No particular improvement. I think I've been snookered, how 'bout you? LOL. I am not in the least angry or resentful though, as I made the decision to try it.
    The amazing thing about her though is that she knows what I am thinking without me telling her. She knows stuff about my childhood she could not possibly know. She really believes this stuff works, but how it could, and how she could even believe it does is beyond me entirely.

    Oh well, now I've written a book and rambled on endlessly just to tell you I already took the test lol!

    I had a doctor appt yesterday though, and talked my doctor into letting me try Doxy for one month. I start at 200 mg to see how I tolerate it then go to 400 for 3 weeks. He was very testy about prescribing it and is utterly convinced it will not help at all, but it's a start at least. My worry is that Burresco says that with Neuro Lyme you need high doses and maybe intravenous to touch the stuff, so this may not tell me anything.
    How are you feeling with yours? I hope this will be the turning point for you; you've dealt with this stuff for darn well long enough!

    Big Hugs,
    Gretchen


  11. mrdad

    mrdad New Member

    Thanks Gretchen! You know, there are so MANY people on the
    Board who have been ill for years and years, yourself included. I was fortunate that this illness waited years to
    manifest itself and I had that time in a state of positive
    health! Until recently, I was able to do some very creative
    things that were intrinsically rewarding! I miss that now, but
    I'm not depressed or feel "cheated".

    I maintain a great deal of admiration for people such as yourself who have battled a multitude of illnesses and yet
    find the strength and courage to arise each morning and at-
    tend to family and duty!

    I do wish you could find a Lyme Doc in your area. I'm on
    200mg of Doxy a day for 28 days. I don't know what effect, if
    any, it will have. We all pretty much "play it by ear" don't
    we? But it sure helps to be informed and work in the direction that promotes are goal(s)!

    I'm learning a lot on the board as well as other sources of
    information. I think a lot of this is "trial and error" even
    for the specialists, as each patient has a unique set of
    veriables in the illness. You seem well informed and both
    of us have to be our "own best advocates".

    Huggles,
    MRDAD
  12. victoria

    victoria New Member

    You can say THAT again:

    'I think a lot of this is "trial and error" even for the specialists, as each patient has a unique set of variables in the illness. (ALL) of us have to be our "own best advocates".'

    Especially when you consider the different strains of Bb react differently to each abx... and then add in the likely co-infections...

    It's like a new mystery I think with each patient for these doctors!

    all the best,
    Victoria