UPDATE on my son's treatment for LYME: good news, bad news

Discussion in 'Fibromyalgia Main Forum' started by victoria, Jan 20, 2006.

  1. victoria

    victoria New Member

    Just to recap:
    My then 17 yo son was diagnosed last May with chronic as well as active Lyme.... this was after having problems with anxiety/depression starting at 15 and then showing last winter most of the physical symptoms I've had -

    internist agreed there was something wrong as he had abnormally low BP/pulse and had lost weight that he really can't spare, but didn't know what really to advise us as all the regular blood tests showed up normal plus had others done for hemachromatosis and some other possibilities.

    Since I have herxed on the Marshall Protocol and experienced positive changes, and the fact that lyme shows up often in familial clusters, and the fact that he spent his life running around our 40 ac, I figured the best bet was to get him tested for lyme.

    Well, tests done last May were positive for chronic as well as active, but at least he didn't show up as having anything else that is commonly associated with Lyme. He has since been on abx, and while he has done a little better, it hasn't been all that big of a difference.

    He is now 18, is able to work full time at an easy job (had gotten his GED last winter as it was impossible for him to deal with regular school due to his symptoms), but doesn't have much energy to do much else IMO from what I've observed... but wants to work for his own self esteem at least for now.

    He was retested for Lyme plus several associated diseases like bartonella, etc., plus mycoplasma, in December, and we got the results today -

    The GOOD NEWS is he has no other infections other than Lyme! :)

    The bad news is the tests show that the Lyme is still an active infection :(

    They changed his antibiotics again, one is augmentin as they feel that it often works better on the brain in particular... and of course he has another one or 2 abx to take/alternate. If he is not doing better in 2 months he will have to go on an IV for antibiotics;

    So, all I can say is, watch out for those dang little ticks no matter where you live or travel!

    And I strongly advise people to get tested!

    All the best to everyone,

    PS: for those who are new, no - I have not been tested myself - as we have no health insurance, we are paying out of pocket for son... so far the tests alone have run up to $7K in past 8 months... the most expensive part so far of treatment.
  2. kalley167

    kalley167 New Member

    I hope that this round of meds gets it under control and his finally feels better.
    Just watch the augmenton as it contains sulfi and some people break out because of it. God Bless.
    [This Message was Edited on 01/20/2006]
  3. Countrymom

    Countrymom New Member

    Healing lyme by stephen Buhner, I think that is the spelling.

    It has a great herbal protocol for lyme.
  4. victoria

    victoria New Member

    I have that book on order actually...

    but ya know, when an 18 yo is taking so much as it is (he is taking supplements to build immune system as well as abx) it's hard to know if he's going to be willing to add anything more...

    all the best,
  5. victoria

    victoria New Member

    bumping up

    seems like more and more are getting dx'd...

  6. alaska3355

    alaska3355 New Member

    your son sounds similar in many ways to mine. Same age- mine turned 18 last spring. My son had to also drop out and get a GED...couldn't get up early enough for school or focus. He's now in college, but we're being very careful with his schedule so he doesn't get too sick to go. He has improved with Cortef, for his adrenals. And we have also paid several thousand dollars on his tests and treatments...some was covered by insurance, some wasn't. That was out of pocket. I hope you'll be able to get the care you need, such as being tested for lyme. You need to take care of yourself too! Love, Terri
    p.s. My son has lost weight too- 25 pounds.[This Message was Edited on 01/24/2006]
  7. Mikie

    Mikie Moderator

    I am glad your son does not have other infections and I pray the ABX work for him. It's so hard to see such young people with these illnesses.

    Love, Mikie
  8. kcollins

    kcollins New Member

    My son 20 yrs old also suffers with anxiety and depression and we would like him to be tested for lyme disease.
  9. Angel6801

    Angel6801 New Member

    Praying for you and your son. It is hard to see a child getting so sick and is young at the same time. I'll pray for you and your son.
  10. victoria

    victoria New Member

    You know how you feel when you 'finally ' get a firm diagnosis.... and then that euphoria quickly disappears when you realize that there is no easy cure or may not even be one... at least that is the way I am feeling right now, I am really worrying about him, perhaps prematurely tho.

    We are discouraging him from school right now as I don't think he would get the full benefit from it, his short term memory is not very good... gets us into arguments cuz he thinks he understands something, then later I realize he didn't, and/or he doesn't even remember me explaining it...

    I also read in the last 2 weeks about that Florida State U. star quarterback (who was found mumbling and wandering down the street in the middle of the night saying he was God half-undressed, & found to have Lyme after nothing else showed up after a month in hospital being tested - lyme test was test of las resort) - he was doing IV abx since last summer, came back to school, and was hoping to try out again for football...

    --well, this young man has decided he doesn't have the energy/health to do it after all :( and he has decided to focus on his health and his studies as he wants an MBA, which of course are the most important things... but what a disappointment it must be for him. But it shows how long it can really take to get well with this DD, even when he got the best of care his parents could find...

    Terri & Kathy - my son is 5'8" and was 135 lbs, went to 125#, has gained a couple back at least... they did the full panel thru Quest Labs of the Igenex tests plus the 5 most commonly associated tickborne diseases, plus mycoplasma. The interesting thing is that his initial blood test thru the internist didn't show an infection, whereas they do now after taking abx for 6 months.

    I don't know that anyone knows exactly where Lyme is or isn't, geographically, and isn't unheard of actually anywhere.... there are always anomalies. What's to prevent a tick from hitching a ride on a pet of someone moving to Alaska from New England, say...

    If my son hadn't turned up positive beyond a doubt, I would've probably just kept testing him for various things... the problem is the Lyme can show up as false negatives tho :(

    -I wish you and your son luck, one really seems to need it to come up with a diagnosis with some of these diseases, sadly! let alone a 'cure'!

    all the best,
    [This Message was Edited on 01/24/2006]

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