Saw new doctor

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by gb66, Jun 22, 2013.

  1. gb66

    gb66 Active Member

    I saw another doctor yesterday. I've had CFS/ME and FM for over 30 years and never had it addressed by any of the doctors I've had over the years. They do acknowledge the FM but not the CFS/ME, which causes the worst of my stymptoms.

    I always dread starting with a new doctor because there's so much to tell to bring them up to date. This doctor was different. He listened to everything I said and gave me all the tests I asked for. Spent 30 minutes with me. This is the first time I've been tested for Lyme even though I've told many doctors about the bites i received at the time of the onset of these illnesses. He said Lyme is not in this area but I may have some of the other tick- borne infections. I was on a deer crossing when I was bitten by something on my abdomen. I had several large, red, puffy rashes that appeared days later.

    I became very ill at that time with, what I now know to be symptoms of Lyme or CFS. I don't know what lab he's sending it to, but if it all comes back negative, I'll request a more thorough testing. I've learned a lot on this board! When we were talking, he said I obviously have a medical background. Well, my "backgroud" comes from experiencing years of suffering and lots of research and belonging to this board.

    The lab tech said she had never seen the amount of tests ordered on a patient that he ordered for me. They took 10 vials of blood, had to do each arm, but it's worth it if I can find out anything about what's going on. I've tried for years. Even if I never get well I would at least like to know what I have. GB66
    Nanie46 likes this.
  2. mbofov

    mbofov Member

    BG66 - am very glad too you found a doctor who will listen! Good luck with this and keep us posted -

    Mary
  3. mrstyedawg

    mrstyedawg Member

    Almost 30 years ill myself.
    I, too, just found a wonderful doctor.....He spent one and half hours with me. He too is testing me for lyme. Had my first test for lyme from Wester Blot.......the test showed I was negative on some, positive on some, and indicative on some. I am now having a more thorough lyme test done by Advanced Laboratory Svcs. The test is quite expensive and insurance will not pay for any lyme testing. This disease is really for the rich. lol

    We are going to have to start a 30+ club!!!!
    I pray that we will get some answers finally!
    Andrea
    Nanie46 likes this.
  4. Nanie46

    Nanie46 Moderator

    gb66,

    I'm very happy to hear that you found a Dr who listens. From the short history you described, it sounds very possible that you could have tick-borne diseases. There are many of them to consider. They can all cause fatiguing illness.

    When I finally went to a Lyme literate MD for an evaluation, I was so shocked when he spent 6 1/2 hours with me. My appt was for a 4 hour initial eval, but it took 6 1/2 hrs. It was absolutely the most thorough eval I ever had. He even examined my fingernails and toenails with a magnifying glass.

    Tick borne diseases are very complex, especially when they went untreated and became chronic.

    It is very important to remember that testing is not reliable for Lyme and some other tick-borne diseases. Many people with Lyme have only had negative test results for many reasons....immune system is not functioning properly so antibodies are not present, different strains of borrelia may not be detected, etc.

    If I had relied on a test result and the Drs who told me that I did not have lyme based on those negative test results, I would never have been properly diagnosed and treated.

    I have many links to info on tick-borne diseases if you need anything.

    I pray you get answers soon and will have new hope for recovery.
  5. Nanie46

    Nanie46 Moderator

    gb,

    Also, I have read many posts on lymenet from people who had lyme, whose Dr told them that Lyme was not in their area. Lyme really knows no boundaries. This fact is reflected in the first statement in this link:

    http://www.ilads.org/lyme_disease/about_lyme.html

    You probably already knew that, but so many Dr's do not.
  6. gb66

    gb66 Active Member

    Thank you Lydia, Mary, Andrea and Nanie. I hope to find out something soon. I know these tests can take more time than some other bloodwork does though. If it comes out negative, I'm going to request another one. Should I get the IGNEX or the Advanced Lab done next?

    I believe Lyme disease can turn up anywhere. I was in the woods, on a deer trail, bitten by some insect, had large rash and got extremely ill. Can't be that much of a coincidence. I will keep you posted. Thanks again. GB66
  7. Nanie46

    Nanie46 Moderator

    gb, The advantage of the new Advanced Lab Lyme culture is that it looks for the actual bacteria instead of relying on our sick bodies having an antibody response. It's up to you, though.

    http://www.advanced-lab.com/faq.php

    I did find my clues in my Igenex western blot, which had some positive Lyme specific bands show up, even though it was read as officially CDC and Igenex negative. When I had the Igenex western blot done, the Advanced Labs test was not yet available.
  8. mrstyedawg

    mrstyedawg Member

    gb66,
    I have had the Igenex Western Blot......My dr. is now sending me for the more advanced testing done by Advanced Lab......Cost around 550.00. Very expensive, but I am going for it. Your rash definitely sounds like lyme.....Hope you have answers soon.
    Andrea
  9. gb66

    gb66 Active Member

    I got my copy of the lab report today but I'm not sure what tests he ordered in relation to the Lyme and co-infections. I don't think this is a Lyme test though. The report says Ehrlichia Chaffeensis IgG Ab is 1:64. Ehrlichia Chaffeensis IgN is 1:16.

    Nanie, I hope you can tell me what, if anything, this means. I also have very low Vit. D level. It's 15, and normal is 30 to 80.
    He wants me to take 10,000 units for the next ten days (D-3). For thyroid, the TSH is 4.720, Free T4 is 1.11, Free T3 is 3.41, C-Reactive Protein is 3.2, RA Quant. is less than 10, A1C is 6.0.
  10. IanH

    IanH Active Member

    This test says you have antibodies to E. Chaffeensis. Was this the infection you got years ago/ What was the treatment? You shouldn't have the infection now though, if you were treated. however who knows what legacy such an infection leaves since it does infect/affect the lymphocytes and the neutrophils (as well as monocytes). Such infections generally produce pain and fatigue as well as digestive tract disturbances.

    Sounds like your new doctor is thorough.
  11. Nanie46

    Nanie46 Moderator

    Ehrlichia Chaffeensis is a coinfection spread by ticks. It is also called HME: Human Monocytic Ehrlichiosis.

    You were exposed to it according to your test results.

    You can read about it on pages 25 and 27 of the following paper:

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

    You can also read about it here:

    http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=917&Itemid=576

    More info here:

    http://www.lymedisease.org/lyme101/coinfections/ehrlichia.html

    If you were properly treated for it, it could be resolved. If you were not treated for it, or were undertreated, you could still have HME in a chronic state.

    Since you have or had one tick-borne infection, it is possible that you could have late stage lyme disease also.

    I took 10,000 IU of Vit D3 for 2 years with no side effects. It boosted my Vit D level to 80. I decreased my dose to 5,000 IU and my level dropped to 60. My LLMD wanted my level at 80. I have to wonder if 10 days worth of it will help that much.
  12. Nanie46

    Nanie46 Moderator

    Hi gb,

    My best advice to you would be to find a good LLMD or LLND. Let me know if I can help you at all.
  13. gb66

    gb66 Active Member

    Nanie and Ian, Thank you both for your replies. I am going to ask my doctor about ordering the Lyme test from Advanced Labs. I will have to pay for it though because I'm pretty sure Medicare doesn't. I'll check on it though.

    Nanie, There are no LLMD's in my area. I've checked on it several times. I believe this current doctor will put me on antibiotics. I'll see him in 3 weeks. GB66
  14. Nanie46

    Nanie46 Moderator

    gb,

    You're welcome.

    If you'd like, you can send me a private message about your location and I will check to see if there is someone new or who is closest to you. I have the list for the USA and sometimes there are lyme literate Dr's not on the list who come by way of personal recommendation from people on lymenet or through a local Lyme disease support group.

    The concern about your Dr treating you for late stage tick-borne diseases is that it is very complex because of all the body systems that have been negatively affected for many years which need to be addressed, the different forms of borrelia that the bacteria morphs into that must be addressed, and multiple infections are usually the norm, etc. Treatment in the chronic stage is different than the acute stage.

    He is probably not lyme literate and would likely follow short-term IDSA guidelines instead of ILADS guidelines.

    It takes much more than taking an antibiotic or two for several weeks or months to recover.

    I only wish you the very best. There are tens of thousands of people in your same situation who have been undiagnosed for many years because Dr's are not properly educated about tick-borne diseases.

    It took me 21 years to get a proper diagnosis and I had to do all the research myself.


    Here are the basic treatment guidelines written by an ILADS LLMD, which I would recommend reading:

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


    Here are some links to FAQ's and other info about the Lyme culture test from Advanced Labs:

    http://www.advanced-lab.com/faq.php

    http://www.advanced-lab.com/spirochete.php

    http://www.advanced-lab.com/downloads/Borrelia_Requisition_Form.pdf

    http://www.advanced-lab.com/news/AdvancedLabBooklet.pdf