Son Diagnosed 5 years ago - Help!

Discussion in 'Lyme Disease Archives' started by kimvic, Jun 2, 2009.

  1. kimvic

    kimvic New Member

    My son was diagnosed and treated for lyme 5 years ago. He had lyme titers taken after antibiotic course and titers went down. So we figured he's cured. Now he always complains about aches and pains in knees, back, etc. He is very tired but could be due to taking Accutane for acne. I was told by his doc that once he was finished with antibiotics he didn't have lyme's anymore. But now I am beginning to wonder if he still has it. Is there a test that he can have done?
  2. Nanie46

    Nanie46 Moderator

    Hi and welcome,

    It is very possible that your son is having lyme symptoms. How old is he?

    Most Dr's, unfortunately, follow the IDSA guidelines for treating lyme which only recommends short term treatment. Once the treatment is complete they declare the patient cured.

    It sounds to me like your son needs a good Lyme literate MD (LLMD) who follows the ILADS guidelines. A good LLMD would be able to evaluate your son properly and determine if he needs treatment. He would also evaluate for common tick-borne coinfections.

    A western blot IgG and IgM done through Igenex lab in CA is the test of choice, however it shows exposure to lyme, and we already know he had past exposure. I think I would let a LLMD decide if he should be tested. (www.igenex.com)

    IgG shows past exposure and IgM shows active infection, although sometimes people are so sick that they aren't even making antibodies anymore.

    Also, the criteria for reporting the western blot as negative or positive are only reporting criteria, not diagnostic criteria.

    There is no test that is 100% accurate. Alot of LLMD's don't even bother with lyme titers.

    I will attach some important information to read........


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

    the above paper has lots of valuable info written by a Lyme expert. Symptom list pgs 9-11.
    Good info on other associated coinfections like bartonella, babesia, ehrlichia, etc.



    http://www.lymepa.org/Basics2007v1.2Rev.pdf


    good symptom list in the back of the above booklet


    http://www.ilads.org/insurance.html

    the above article is a must read, explaining the two standards of care IDSA vs ILADS.


    http://www.ilads.org/files/ILADS_Guidelines.pdf

    the above paper is the ILADS guidelines.


    I strongly urge you to go to lymenet.org....click on flash discussion...sign up for free like you did here.....click on the seeking a Doctor board....and post a new topic stating something like this.....Need a Pediatric LLMD in Maryland (or whatever state you are in)...if your son is grown, then omit the pediatric part. Someone will send you a private message with names of LLMD's, since we never publish their names.

    There are not alot of LLMD's, let alone pediatric ones.

    For people with chronic lyme though, a good LLMD who is ILADS trained, is necessary. Most don't take insurance, so many of us pay out of pocket for our treatment.

    Also, go to lymenet.org's Medical Questions board and post a new topic there also, such as "New here, son had LD Rx 5 years ago, now c/o knee & back pain and fatigue... help please". That subject line will get people's attention and get you some responses.

    Be as specific as you can about your son's past treatment...type, duration, etc. in the body of your post. Ask questions.

    Lymenet.org is a very active board with alot of intelligent people including people who have children with lyme...so they can probably direct you better and you will find alot of support.

    I can be found on lymenet.org as Dekrator48.

    Oh, and when you post on lymenet.org, please be sure to make your paragraphs only 1 or 2 sentences and then leave a space like I am doing here.

    Many people who have lyme have alot of neuro symptoms and have trouble reading long paragraphs with no spacing.....thanks!

    You are a great Mom for recognizing that your son could have chronic lyme. Keep posting and asking questions here and on lymenet.org.

    All the best to you and your son!

  3. kimvic

    kimvic New Member

    OMGoodness! That is so much information. I really, really appreciate it. I will be sure to start to explore these resources. I will definitely look for you on lymenet.org.

    Thank you again