UPDATE: Going to doc on Friday. What tests should I ask for?

Discussion in 'Fibromyalgia Main Forum' started by abbylee, Nov 2, 2005.

  1. abbylee

    abbylee New Member

    <b> Please read my last post at the bottom of this thread for update. </b>

    Please help me. As many of you know, I've been feeling awful lately. The only tests my doc has ever run have been standard cbc, etc. From some of your posts, I know there are other tests I should have for fms. Please tell me what I need.

    thanks so much,

    abbylee
    [This Message was Edited on 11/06/2005]
    [This Message was Edited on 11/06/2005]
  2. Pianowoman

    Pianowoman New Member

    As well as the standard CBC with WBC and Differential, you should have a Sed. rate done ( ESR). I would also ask about liver function tests. If your Doc. will go for it, viral studies can be very helpful as well.
    I agree with the thyroid suggestion too.

    Kathy.
  3. AkaPosh

    AkaPosh New Member

    For me it has been since the birth of my youngest child who just turned 6....Many Dr's later finally they are checking my thyroid. So yes ask for that test. From what I have learned your thyroid can cause many of the Fibro symptoms.....It is done by a blood test as well as ultra sound....ask for both.
  4. 57Wagon

    57Wagon New Member

    don't forget Lyme disease
  5. karatelady52

    karatelady52 New Member

    Yesterday I talked to the nurse at the Fibromyalgia and Fatigue Center and she said almost all the the FM/CFS patients who come in there have viruses and many have lyme. Doctors don't routinely check for either.

    The lyme needs to be a Western Blot by Igenex and not the Elisa which has a lot of false negatives.

    Many doctors say that we all carry the Epstein-Barr virus along with others but when the titers are higher than normal which means they are active in your system, they drag you down and can cause a lot of the symptoms of FM/CFS.

    I am taking an anti-viral called Artemisinin along with a slew of supplements and abx's for lyme disease. My regular pain specialist never tested me for any of these things. I don't think she would have even is I had asked. All she did was make me "comfortable" with pain meds, accupuncture, massage, destressing, pressure point therapy, pressure point injections --- you name it, I've tried it.

    Sandy
  6. abbylee

    abbylee New Member

    I'm making a list. Are there any others?

    abbylee
  7. hopeful4

    hopeful4 New Member

    I don't know if you have been following any of the posts about the Fibromyalgia and Fatigue Centers (FFC). This is from an earlier post I wrote.

    I went for my first appointment to the Cleveland FFC in March. I believe that one of the strengths of the FFCs is not just the tests they perform, but the ability to interpret them correctly for people with FM/CFS.

    Often, we may test within the “normal” range for something, but when the whole picture is looked at, for us it is in fact, not normal. So please take that thought into consideration.

    At the first visit, I had many vials of blood taken. Three weeks later, I received a copy of the results – 18 pages worth! Then, the doctor called me for a one-hour phone consultation (I live out of state), going through each test, and interpreting it for me in a way that I could understand. It’s possible that due to a person’s medical history, they may have some different tests done. Then, a treatment plan was given.

    First Visit Labs
    Test Name (I don’t know what some of the abbreviations stand for):

    Comprehensive Metabolic Panel – 17 tests (sodium, potassium, chloride, carbon dioxide, calcium, alkaline phosphatase, AST, ALT, Bilirubin, glucose, urea nitrogen, creatinine, bun/creatine ratio, protein-total, albumin, globulin-calculated, a/g ratio)

    CBC w/Diff and Plt – 21 tests (WBC,RBC, hemoglobin, hematocrit, MCV, MCH MCHC, RDW, platelet count, platelet sufficienty, neutropyilis-absolute, lymphocytes-absolute, monocytes-absolute, eosinophils-absolute, basopyils-absolute, total neutropyils %, total lymphocytes %, monocytes %, eosinopyils %, basopyils %, RBC morphology)

    DHEA Sulfate
    FSH
    Homocysteine, CVD
    LH
    Sex hormone binding globulin
    TSH
    T4, Free
    T3, Free
    Thyroglobulin AB
    Thyroid Peroxidase AB
    Lipoprotein (A)
    Cortisol, Total, Serum
    Magnesium, RBC
    Heavy Metals, Blood (Mercury, Lead, Arsenic)
    Cortisol, Free
    Pregnenolone
    Fibrinogen, QN
    ALK Phosphatase, Bone
    ACTH, Plasma
    IGF Binding Protein-3
    Interferon-Alpha, EIA
    Iron & TIBC, Serum (Iron, TIBC, % Saturation)
    Cardio CRP
    Hemoglobin A1C
    Insulin, Serum
    Vitamin B12, Serum
    Ferritin
    Progesterone
    Estradiol
    EST, Westergren
    PTT
    IGA, Serum
    IGG, Serum
    IGM, Serum
    Folate, RBC
    Thyroid Studies: Triiodothyronine, Reverse
    Somatostatin
    RNASE-L Activity
    NK Cell Activity
    TSH Autoantibody
    T3 Autoantibody
    N-Telopeptide (NTX), Serum
    T4 AB
    VAP TM Cholesterol Test
    Aldosterone, LC/MS/MS
    IGF-1
    Osteocalcin, Human
    TBII
    TBG
    Testosterone, Free/TOT, LC/MS/MS
    Testosterone, %, Free
    Testosterone, Free
    Testosterone, Free/TOT,LC/MS/MS
    Testosterone, Total

    Next, as a result of these labs, I was given certain supplements and prescriptions from a compounding pharmacy. I was also sent for a second set of labs:

    Candida albicans panel
    C. Pneumo AB (IGG, A, M)IF
    CMV IGG AB
    CMV IGM AB
    Epstein Barr Virus AB Panel
    Lyme Disease IGG, WB
    M. Pneumoniae (IGG) Titer, IF
    M. Pneumoniae (IGM) Titer, IF
    Babesia
    Coxsacki Type A
    Coxsacki Type B
    EBV Early Antigen
    Echovirus Serum
    Ehrilichia Chaffeenis ABS
    HHV6
    Lyme Disease IGG/IGM
    Nasal Swab for Coag Net Staph
    Poliovirus Type 1-3

    Most recently I had another test done for Lyme's disease, the Igenex Western Blot, which is considered more accurate than the previous test I had. I should be getting the results back soon.

    Out of all of these tests I have been diagnosed with:
    Low T3, very low estrogen, very low progesterone, low pregnenolone (almost none), low cortisol, low testosterone, low DHEA, low WBC, high RNase (indicates infection), very low NK cells (immune system), systemic candidiasis, and Mycoplasma pneunomiae.

    Just sharing this info to show you the scope of testing and the many layers of possible concerns that need to be addressed.

    Good luck at your Dr. appointment.
    Take care,
    Hopeful4



    [This Message was Edited on 11/03/2005]
  8. abbylee

    abbylee New Member

    Do you mind sharing your treatment plan, or some of it?

    Thanks,

    abbylee
  9. jfrustrated

    jfrustrated New Member

    if not already on your list, add:
    vit D3
    iodine levels
    active iron levels

    *nb - not just have blood tests, see if your doctor will order saliva and urine tests, and even poo tests. Some of these you can do at home.

    Good luck.
  10. jimbbb

    jimbbb New Member

    Abby,

    Get you 25D (inert precusor) and 1,25D (active hormonal form) done just for good measure.

    Then bring them over to the Marshall Protocol people for an evaluation. Some of the others already mentioned that are good to include too -- SED rates, ACE.

    Be sure the blood is frozen immediately after being spun down for the 1,25D test since that level deteriorates quickly if not kept frozen.

    The nice thing about 1,25D test is, if it is elevated then that is all you really have to know -- it is an indication of systemic inflammation in most cases and the actual name of the disease is unimportant. Also if you have some Th1 type disease you can also acquire a lot of additional co-infections of bacteria, virii (heck spores molds and funguses too) that take up residence in the compromised immune system. But don't worry too much about those -- get the main one and the rest will disappear.

    jim
    [This Message was Edited on 11/03/2005]
  11. abbylee

    abbylee New Member

    I had no idea that there were so many tests, Do any of them prove fms?


    abbylee
  12. hopeful4

    hopeful4 New Member

    How did your appointment go?

    This is the treatment protocol used at the FFC. Of course, it is individualized according to the needs of the patient. They use a combination of vitamins, minerals, herbs, compounding pharmaceuticals/bio-identical hormones, and prescription medications. They also utilize intravenous therapies.

    Component One: Stabilize the patient

    This is a component in which pain and sleep disturbances are addressed. This may include the use of, sleep medications, pain medications and antidepressants. This is in general a temporary “stop gap” phase because as the treatment progresses and the underlying problems are addressed, the medications that “mask the symptoms” are no longer needed. Unfortunately, the overwhelming majority of patients are never brought past this stage by their doctors. This is because this component is the limit of training for most doctors, but it really should only be the first step.

    Component Two: Mitochondrial enhancement

    This component is actually integrated throughout the treatment program and tapered as the patient returns to normal functioning. The mitochondria are the energy producers of the cells and are critical for normal functioning. But they are shown to be poisoned in these conditions, leaving the cells starving for energy. Many things can poison the mitochondria including hormonal deficiencies, toxins and infections. Mitochondria dysfunction may be the common denominator and underlying mechanism that explains the symptoms of CF/FM. In addition to the treatments above to rid the body of the offending agents, specific nutrients can be given to jump start the mitochondria and get the body functioning again. These can also be administered orally or via an intravenous route.

    Component Three: Balance the hormones

    There are a number of hormonal deficiencies with these conditions that must be addressed to assure successful treatment. Unfortunately, these hormonal deficiencies are often missed or poorly treated because doctors have come to rely on standard blood tests that require an intact pituitary and hypothalamus for diagnosis and dosing of hormone levels. There is, however, severe hypothalamic and pituitary dysfunction with these conditions, making the standard blood tests inadequate. Some typical hormones functions, not just levels, that need to be evaluated include thyroid function, growth hormone, testosterone, aldosterone, cortisol, DHEA, pregnenolone, estradiol, progesterone, among others. When they are properly treated and balanced, tremendous results can be achieved.

    Component Four: Treat the infectious components

    There are multiple infections that either may be the cause of CF/FM or contribute to the dysfunction. Because of the immune dysfunctions, there is often more than one infection that must be addressed. Potential pathogens include a variety of viruses such as Epstein Barr (EBV), Cytomegalovirus (CMV), Human Herpes Virus 6 (HHV6), Enteroviruses, such as Coxsackie, Echo, and Stealth virus. Bacterial infections include intracellular organisms such as Mycoplasma, Chlamydia pneumonia, Borrelia Burgdorferi (Lyme Disease) and Ehrlichia. A number of yeasts such as Candida and parasites must also be evaluated. Infections with many of the above organisms will also further suppress the immunity, often resulting in further infections with other organisms. Thus, many organisms must be evaluated and treated along with an assessment and treatment of the immune system. If a poor immune system is not addressed, successful eradication of the organisms is not likely, even with the most potent treatments. Treatment may be administered with oral medications or via an intravenous route. A combination of IV and oral medication in conjunction with immune modulation is extremely powerful.

    Component Five: Address Unique Etiologies

    There are a number of problems that must be addressed in select patients. For instance, some individuals have a coagulation defect that is set off by a chronic infection. This results in the laying down of a fibrin coating on the lumen of the vessel causing impaired oxygen and nutrient transfer. This can result in fatigue, muscle aches and “brain fog”. If suspected, diagnosis requires specialized testing. If not treated, not only are the cells starved for oxygen and nutrients, but it is very difficult to eradicate any infection because they will “hide” in the fibrin coating. Also, if the organism is one that produces neurotoxins, this must also be addressed. These substances can remain in the body and continue to cause symptoms long after the organism that produced them are gone. Special testing and protocols must be done to rid the body of these tiny toxins.

    Component Six: Maintenance

    Here is where the patient is weaned to just a few core medications and supplements to remain symptom free and maintain their health. Significant recovery or complete resolution of symptoms is the rule rather than the exception when a multifaceted treatment plan is instituted.

    Take care,
    Hopeful4
  13. ilovecats94

    ilovecats94 New Member

    Abbylee

    I hope you make sure your insurance will cover all those tests before you have them done. If they don't cover them all, you'll be stuck with a mightly large bill to pay.

    Don't forget to consider that.

    Hugs,
    Faye
  14. hopeful4

    hopeful4 New Member

  15. morningsonshine

    morningsonshine New Member

    This is great, i'm suppose to see a new doc. this month and had no idea what to ask for. Would like to hear more about this FFC place, Mikie mentioned it to me also. Sounds expensive tho, but might be worth it to finally get a handle on just exactly what i'm dealing with, instead of guessing. Do they have a good lymes test there?
  16. abbylee

    abbylee New Member

    Thank you all so much for listing all of the tests I should have.

    I showed him the list, and he said most of those tests were done years ago when we were with Kaiser. Funny..I don't remember getting any results but I remember very little anymore.

    He ordered the usual, with a couple of addins, but he pretty much said that until more is known about fms, I'm stuck with what I have.

    Long trip for so little.

    abbylee
  17. abbylee

    abbylee New Member

  18. karatelady52

    karatelady52 New Member

    The Fibromylagia and Fatigue Centers ARE finding out why we have FM. Its not something you have to be stuck with. They are finding we have viruses, lyme disease, toxins, parasites, systemic candida yeast, etc.

    FM and CFS are not really a diagnosis. They are a syndrome of something underlying that is causing the problem. As you can see from the treatment plan Hopeful4 gave you, they routinely look for these problems so you can get well and many are getting well from those I've talked to at the centers.

    Sandy