How is Chronic Lyme best diagnosed?

Discussion in 'Lyme Disease Archives' started by bct, May 22, 2006.

  1. bct

    bct Active Member

    I'm a prime candidate for Lyme. I've been bitten many times by ticks, both adults and nymphs, over the last 35 yrs. of living in the woods.

    I've had bull's-eye rashes. I have been dxd. as having CFS. My doc. thinks that since I don't have joint pains that I couldn't have Lyme. I do have peripheral neuropathy, chronic macro-cytosis, and have had idiopathic hematuria, and other stuff too tired to remember now.

    My elisa and western blots have all been negative, both on blood-work and spinal fluid. Should I agree with my doc. that I don't have Lyme and just CFS, or should I take the time, money, and energy looking for a LLMD?

    I DO know that Lyme is a clinical diagnosis.

    Hope someone can help me.......

    Thanks,
    Barry



  2. victoria

    victoria New Member

    I would definitely seek out an LLMD... the more time that goes by, the harder it will be to get rid of it. The average amount of $$ people spend to get a 'firm 'dx is around $65K btw...

    And anyway a doctor is supposed to treat based on clinical picture, which you clearly fit. Not everyone has the same exact symptoms, as I'm sure you know.

    all the best,
    Victoria

  3. redsox10

    redsox10 New Member

    Barry,

    You need to get tested for Lyme through IGENEX labs. I owuld find a LLMD right away.

    If you go to lymenetdotorg. Go to the forums and post a message in the find a doctor section. I am on the east coast and do not know any doctors by you.

    My daughter was diagnosed with CFS for 2 years before her lyme diagnosis.

    Good luck!
  4. jarjar

    jarjar New Member

    I tested positive for Lyme and have no joint pain. Went with the CFS label for ages....Grew up getting bit by ticks all the time. Get the Igenex Western Blot taken. Seek out a good LLMD. The majority of the cfs and FM patients on this board are just a lyme case that hasn't been tested properly.

    jar
  5. hopeful4

    hopeful4 New Member

    You really are a prime candidate for Lyme Disease. Wish you could win the lottery instead. I'd place a bet that you have it, and probably co-infections, too.

    Your best bet is to find an LLMD and go there ASAP. The LLMD will take into account your symptoms and history including as you said yourself:

    "I've been bitten many times by ticks, both adults and nymphs, over the last 35 yrs. of living in the woods.

    I've had bull's-eye rashes."

    The blood test you need is from IGENEX lab, their Western Blot.

    Remember...a negative lab test does not mean you don't have Lyme. Only that the borrelia burgdorpheri were not found in that particular sample. Often, when not being treated, the Bb hides in the tissues. For many people, once they start taking antibiotics or other treatment, that is when the Bb appears in the blood sample.

    If you want your life back take whatever time, money and energy you have, find an LLMD, and do some further reading.

    You can find a lot of info and a forum at lymenet dot org. Also, go to ilads dot org, and lymeinfo dot net.

    Please read:
    DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES by Joseph J Burrascano, Jr., M.D. Updated September, 2005 found at ilads dot org

    Best wishes,
    Hopeful4

  6. bct

    bct Active Member

    I'm sorry to be tardy in replying. Went to town yesterday and am exhausted today.

    You have all pushed me in the direction I have felt was the necessary one to take. And I REALLY NEEDED that push, so again, thank you.

    I will seek out a LLMD.
    I WILL get an Igenix test.
    I WILL persevere.

    I will keep you informed of my progress if I feel it is of any value to anyone.

    Love to all,
    Barry
  7. jarjar

    jarjar New Member

    Do you live close to San Francisco....If so I may know of a good doc for you for lyme.
  8. bct

    bct Active Member

    I live about 200 miles N. of San Francisco. What is the name of the doc. there that you rec. as LLMD?

    Info. much appreciated.
    Barry
  9. jarjar

    jarjar New Member

    We had the best lyme expert in Texas who is a LLNP, have to leave the state because of pressure from state government. She was working once a week with a VERY famous lyme m.d dr. sticker before she had to leave.

    Dr. Stricker no longer accepts new patients. Last I had heard Ginger is accepting new patients and is working full time in Dr. Strickers office. Their office is in the Union Square area. There are many of her patients from Texas that continue to see her in SFO.

    You can do a search for Dr. Striker Lyme and track him down to try to get an appt.

    Ginger had lyme herself at one time and recovered.

    If you have problem finding number let me know and I can track it down.

    jar
    [This Message was Edited on 05/25/2006]
    [This Message was Edited on 05/25/2006]
    [This Message was Edited on 05/25/2006]
  10. bct

    bct Active Member

    I see you were dxd. for a number of yrs. with CFS.

    What test did you have to dx. Lyme, and had you been tested for it previously. In other words, did you ever get any false negatives?

    Thanks,
    Barry
  11. redsox10

    redsox10 New Member

    HI Barry,

    I just wanted to respond to your post.

    I have 2 kids with Lyme. Ages 26 and 17. My 17 year old was diagnosed with CFS for 2 years before her diagnosis of Lyme Disease. My son was recently diagnosed last fall with Lyme disease but has had symptoms of headaches, GI problems for years.

    My daughter had a negative ELISA. She has a western blot done at IGENEX along with PCR testing. She is positive for Lyme and Babesia. After 18 months of treatment for lyme she is much improved. She has a long was to go but is so much better than 18 months ago.

    Go to igenex web site. They are very helpful if you call. They will send youa kit. Ask for western blot IgG and IgM. You will need your doctor to sign the lab slip to order the test and IGENEX will send you a mailer to fedex it to them with instructions. Make sure you get a copy of the results from your doctor.

    It took me a few months to take this route with my daughter. She was diagnosed with CFS by one of the top CFS specialists in the country. I know we are on the right road. There is no doubt in my mind that a high amount of CFS is in fact Lyme Disease.

    Hope this helps. May healthier days be in your future.
  12. jarjar

    jarjar New Member

    She is correct on the test to ask for. Last year they added a new test for people first testing for lyme. Don't take it as its not needed and will save you money. Take what was mentioned above.

    I had an ELISA test taken in 04 and my doc said you don't have lyme and I filed away the paper work. A year later I pulled it back out and the test said my results were inconclusive and I need to do a follow up with a Western Blot. Of course I took the Igenex Western Blot and here I am.