Seeking Help In Raleigh, NC

Discussion in 'Lyme Disease Archives' started by pdavis39, Jan 29, 2008.

  1. pdavis39

    pdavis39 New Member

    This forum was provided by a member on another site. . I'm the mother of an 18 yr old son and we suspect he may have been infected years ago. I really respect the training and education our Dr's have achieved, but bottom line is that they are human too. I'm realizing more and more you really have to become your own advocate for getting answers..especially with something like these where there is so much controversy. After two plus years of Dr appts...numerous tests and tons of prescriptions.... the final word from the specialists my son has seen is " we know something is going on...we don't know what it is... but come back in six months and maybe it will present itself more clearly ". My thought is .. how much more presentation do you need ??
    Here is an 18 yr old who in approx two years has gone from being strong, active and athletic to having days where he can barely get across the room he's in so much pain, can barely sleep most nights, his entire left side is numb/weak/painful and not it's starting on his right side. I see now that we'll have to be our own advocate in getting a diagnosis and treatment.....hence the reason I'm writing here. Any suggestions or guidance will be appreciated. We live in the Raleigh, NC area.

    Many Thanks
    P Davis
  2. mollystwin

    mollystwin New Member

    I copied this from one of Victorias' posts:

    There are various organizations that can help. Here's a few that can:

    http://www.aldf.com/physicianReferral.shtml

    http://flash.lymenet.org/scripts/ultimatebb.cgi
    (here you post on the board listing your area, others will respond via pm)

    www.lymediseaseassociation.org/referral


    It's very important to find a doctor who knows how to treat lyme disease. It took me years to figure this out. It breaks my heart that your son is so ill.
  3. victoria

    victoria New Member

    Hi I saw your message to me on my other post here. I'm so sorry to hear about your son. It is so hard when it's our kids. We're in Georgia and travel to the Carolinas to see my son's LLMD, who sees pts from all US states plus pts from overseas.

    Yes, my son was dx'd at age 17, from all signs/symptoms we figure he's had it for more than 2 years prior, but hard to say how long. No bulls-eye rashes, that were observable at least. He tried for 2 years to go to HS, but at the end of 2 years didn't even have enough credits to say he'd finished one year, so he dropped out and was able to work on his GED successfully even tho his memory is so bad. However, almost 3 years later, he's still not ready to take on college or any other type class.

    Altho none of the standard tests showed anything abnormal, his pulse was as low as 46, BP was abnormally low, he lost weight, lots of pain and numbness (arm would go to sleep even from BP cuff). His internist here had no idea of what to do next or where to send him even. That's when I got a referral from people in Atlanta area thru LymeNet Flash, who told me to go out of state and not waste our time/money here.

    Thankfully he did show positive 2X 6 months apart on the Western Blot, and both times according to the CDC's surveillance/tracking standards (which few do and even the CDC says is not necessary for a diagnosis). I am hoping this will help get him SSI eventually... plus the fact it gave him a firm dx he couldn't be in denial about. (The WB should be done by iGenex, the most reliable, but only 70% at best.)

    Signs and symptoms are different for everyone as I'm sure you know - but it is definitely in the Carolinas as well as here ... hard to go into a lot right now but if you look up my early posts on this board, you'll be able to read my son's story.

    Here is a link to a great article published in May 2005 in the CFIDS Chronicle, right after my son was dx'd. The doctor interviewed has a website, altho he's had to move after being harassed by medical board, but he is one of THE best 'top guns' (so to speak) in treating lyme:

    http://www.anapsid.org/cnd/diagnosis/lyme-and-cfids.html


    Hope this helps a bit, let me know.

    all the best,
    Victoria

    [This Message was Edited on 01/31/2008]
  4. victoria

    victoria New Member

    Besides reading at the main sites for chronic lyme, here is also a free online newsletter that talks about various approaches, plus their old issues are also available:

    http://publichealthalert.org/

    best,
    Victoria

  5. Renae610

    Renae610 New Member

    Your son is blessed to have a mom who will take up this fight. It is not an easy one but our kids are worth it and more!!

    My daughter became chronically ill in Feb. 1999 (grade 6) after a flu shot. She got a tick bite over a year later. She finished 8th grade only. She developed CFIDS and I thought that was all she had because the Western Blot tests (done 3 times) came back negative. Last year the IgeneX test, Red Lab, SpectraCell, and LabCorp came through with a FULL diagnosis!!! See, it paid to be persistent til you get the information you need so that you can treat effectively.

    If IgeneX gives you a positive on Lymes, an LLMD can help and/or if your son is unable to tolerate meds as my daughter is, contact (in N.C.) The Green Pharmacy and Renewal Enterprises (look them up on the web) and call them. They do the Dr. Lee Cowden (TX) Nutramedix herb protocal. There are other protocals too. There's a book about the top 10 treatments for Lymes. There's the Marshal plan, Buhner's book Healing Lymes, using Rife Machines, etc.... but Cowden's program seems very highly respected and much used. So, first get accurate testing, then research to see which protocal best fits your son's specific needs.
    [This Message was Edited on 01/30/2008]
    [This Message was Edited on 01/30/2008]
  6. pdavis39

    pdavis39 New Member

    Thank you very much Tom. I will definitely follow up on this lead. Hope you are doing better.

    PD