Seeing new doctor in 2 weeks...which testing to have

Discussion in 'Fibromyalgia Main Forum' started by ktp812, Oct 18, 2010.

  1. ktp812

    ktp812 New Member

    I have been sick for 6 years and have had tons of testing done. Been treated for Lyme and Bart for 2.5 years with no resolution of symptoms.
    I am seeing a internist/holistic doctor in 2 weeks whom I saw a few years ago and he did alot of testing on me then.
    But I am wondering if there is any testing I could have done that is directly related to CFS. I have done alot of reading and alot of tests people had I never did so I am hoping to get some of that done so we can maybe determine if I do have CFS which is what they believe now.

    I also was hoping someone could let me know where to have this done. My doctor did all the basic tests for virus's and stuff but not the C4a/C3a etc...
    He also uses HBOT therapy which I have never done.

    I would be very appreciative if someone could give me some test names that might help me figure this out..I am pretty sure I have CFS from the Lyme but I am not a doctor and shouldn't be diagnosing myself! Thanks...
  2. AllWXRider

    AllWXRider New Member

    One infection can overwhelm the immune system and open the door for others. XMRV was only found in 65% of patients. I'm being tested for HERV-18 as part of a double-blind study. This means that I am blind to my results too.

    "Syndrome" is an important word: the medical community is un sure, about what causes fatigue and a treatment plan.

    I went to a Infectious Disease Specialist, she told me that after 5 months of Lyme treatments, I should be feeling significantly better. I wasn't.

    If you haven't read: From Fatigued to Fantastic: 3rd Ed, by Jacob Teitelbaum MD, it answers a lot of questions you didn't know to ask. Makes the doc visit much more productive. The SHINE protocol helps me:
    Hormonal balance DHEA, pregnenolone, testosterone, estradiol, thyroid components (RT3, free T3, free T4), cortisol, aldosterone et al.
    Infections treat all of them
    Nutrition - rebuild the body's building blocks
    Exercise - even if its just stretching for now. Think lymphatic flow.

    What supplements are you on?
    Artiminisin broad spectrum anti viral/bacterial/fungal
    Olive Leaf Extract ""
    "All CFS patients must continuously treat for candida" -Teitelbaum
  3. ktp812

    ktp812 New Member

    I was seeing the doctor for 3 years and then got frustrated and stopped..but he is the only doctor I have found who actually will listen and cares and who totally did everything to help me. I think there are some blood tests though that I haven't had done that could be important in getting a diagnosis. I had CD-57 for Lyme done and I think there is one for CFS as well.

    I am on levoxyl and cytomel for my hypothyroid and 2.5mg of cortisol. I exercise as much as I can and take sleep medication. I have not read the book but my doctor uses his protocol's.
    I have been on so many supplements in the past I can't remember them all but as of now I am just on the basic..calcium, magnesium, fish oil, vit D and B2.

    I am under no doctor's care at the moment because my pcp was uninterested in me and never bothered to refer me to someone who could help. This has been going on for so long now and I am getting I just don't want to repeat the same testing. My Lyme doc tested me for everything you can imagine in the virus and bacteria area. I have had MRI's, sleep study, spinal tap, ACTH, DHEA, cortisol, and countless other tests.

    I would like to go into my appt. with an idea of what he could test me for that might help him come to some idea of if this is CFS which I totally believe I have. I am going to order the book today..

    I want to add that I never had a positive test for any of the virus's linked to CFS..nothing ever showed in any testing I had. I did become sick after a 24 hour flu twice in a 7 day period.
    I have debilitating PEM and unrefreshing sleep...along with the constant fatigue/exhaustion as my worse symptoms. Thanks.....
  4. AllWXRider

    AllWXRider New Member

    What anti infective supplements are you taking?
    Body temp?
    Blood pressure?
    PEM? Sorry, what's that?
    Swollen lymph nodes? armpits, under the chin, behind lower lip?

    Cytomel is pure T3, it hits the body hard with, sometimes, too much T3. My wife does much better with time released compounded T3. Cytomel drove her from Hyper to Hypo all in the same day.
    I do quite well on Armour. I was on 90mg only, wife needed 180mg. I'm now down to 30mg after supplementing with potassium iodide (Lugol's or Iodoral 12.5mg). See Dr. Brown's book

    What infective panels came out negative? Bring all lab paperwork with you to next doc appt. save you time and money. Ask old doc's medical assistant for labwork.
  5. ktp812

    ktp812 New Member

    Luckily the doctor I am going to see has every test ever done on me. He was working with my Lyme doctor so they both had copies of all the tests..I was seeing him for 3 years prior.
    I have normal BP usually 118/68 but my temp runs in the low 97's usually 97.2 sometimes lower.

    I am not on any other medications or supplements. I am not under a doctor's care for CFS. I am only seeing an endocrinologist..

    I will list out all the virus/bacterial tests I have had if you are interested. It is a pretty comprehensive one-
    HSV-1 and 2
    Murine Thyphus
    Methylmalonic Acid
    Immunoglobulin G
    IgG subclasses 1-4
    M pneumonia
    Q fever

    Many others which I don't want to take up space listing. I am looking for specific testing for CFS if there is such a thing.
    I have never had a positive test or elevated titer on anything....

    I have been exercising since before I became ill..use to be a runner. I now only walk about 4-5 times a week. I get more exhausted when I have to use my brain such as my job, shopping, or social activities. PEM is post external malaise...