1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
Discuss the article on the Forums.

A LOT of totally incorrect/wrong information and advice given

Discussion in 'General ME/CFS Discussion' started by leokitten, Oct 18, 2013.

  1. rosie26

    rosie26 Senior Member

    Messages:
    1,017
    Likes:
    1,268
    NZ
    leokitten please take your time. Just when you are able. It would be helpful to others.
    peggy-sue likes this.
  2. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    And to add my usual bit...:)

    When you are sitting, keep your feet raised, (or better still lie down).
    It reduces the amount of work your heart has to do against gravity to get the blood back up in absence of the muscular pump being operational.

    Use your own knowledge of of your physiology in these little ways - because it all helps to reduce the amount of energy you are using just keeping your body going.

    All these little bits of "savings" add up to a great deal when put into practise all day, every day...

    Also, use your knowledge of the body to help to work out pacing.

    Brain work, and physical work, eye/seeing work, listening work, leg work, arm work, digestive work, temperature regulation work...

    These little things will help make your resting much more effective - but can be applied in general.
    rosie26 likes this.
  3. SOC

    SOC Moderator and Senior Member

    Messages:
    5,286
    Likes:
    6,274
    USA
    I suspect the question is "What treatable infections or conditions have you been diagnosed with?" We all know antivirals and abx are not prescribed for ME/CFS; they are prescribed for specific infections. I think the poster was asking which infections you have that you are managing to get treatment for.
    Valentijn, rosie26 and vamah like this.
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,504
    Likes:
    1,853
    Midwest, USA
    Infections and anything else. What tests were positive and how are they being treated? What tests were negative would be instructive, as well.
  5. leokitten

    leokitten Senior Member

    Messages:
    143
    Likes:
    304
    Washington, DC
    Hi all, I quickly made a starter list of lab tests only so far (no clinical tests like tilt table, etc), please excuse me if I forgot anything I will add to it if I did:

    HSV-1,2 IgM IgG
    EBV VCA IgM IgG
    EBV EA (R+D) IgM IgG
    EBV EBNA IgM IgG
    EBV PCR
    HHV-6 IgM IgG
    HHV-6 quant PCR (whole blood)
    CMV IgM IgG
    CMV PCR
    Enterovirus Ab panel
    Coxsackie Ab panel
    Parvovirus Ab panel

    Borrelia burgdorferi (Lyme) IgM IgG
    Babesia microti IgM IgG
    Anaplasma phagocytophila IgM IgG
    Mycoplasma pneumoniae IgM IgG
    Mycoplasma pneumoniae PCR
    Chlamydophila pneumoniae IgA IgM IgG
    Streptoccocus pneumoniae panel (14 serotypes)
    Toxoplasma gondii IgM IgG
    Helicobacter pylori IgM IgG
    TB
    Ova and parasite stool and smear
    Comprehensive stool analysis (for yeast, etc)

    IgG Subclasses panel
    IgA Subclasses panel
    ANA w/ titer
    Cardiolipin antibodies IgA IgM IgG
    CPK
    RF
    Natural Killer (NK) cell functional assay
    Immunoglobulin E

    TSH
    Total and free T3 T4
    Thyroid antibodies panel
    24-hour cortisol, urine
    24-hour aldosterone, urine
    ACTH
    Adrenal antibodies panel
    Total and free testosterone (men)
    LH
    FSH
    Prolactin
    IGF-1, IGF-2

    CBC w/ diff
    CMP
    ESR
    Vitamin D, 25-Hydroxy
    Fasting glucose
  6. leokitten

    leokitten Senior Member

    Messages:
    143
    Likes:
    304
    Washington, DC
    See list in this thread
  7. leokitten

    leokitten Senior Member

    Messages:
    143
    Likes:
    304
    Washington, DC
    See starter list in this thread
  8. leokitten

    leokitten Senior Member

    Messages:
    143
    Likes:
    304
    Washington, DC
    See starter list in this thread
  9. Ema

    Ema Senior Member

    Messages:
    3,309
    Likes:
    3,532
    Midwest USA

    I think this is a pretty good starter list.

    I might add that most of us seem to be low cortisol and a urine cortisol test is better at catching excess than deficiency. I would choose a saliva test personally coupled with a serum test and ACTH stim test if warranted.

    I would also feel comfortable testing aldosterone in serum.

    I would also add RT3 to the thyroid tests and estradiol and progesterone to the sex hormone labs, noting that these are best done in cycling women on day 21 as well as DHEAs.

    I would also consider a fasting insulin level.

    If supplementing large amounts of Vit D, I would also check for Vit D receptor dysregulation which can cause the active form of Vit D, 1, 25 D to spiral upwards out of control.

    I would also add iron, serum and TIBC/UIBC, and ferritin and B12 to this list along with a lipid panel.

    A methylation panel by Vitamin Diagnostics might be helpful.

    If anyone has any blood left after all this, magnesium can also be helpful since many of us are low.

    Ema
    Sing, beaker, bigmama2 and 5 others like this.
  10. leokitten

    leokitten Senior Member

    Messages:
    143
    Likes:
    304
    Washington, DC
    Of all the lab tests I've been able to do so far I have:

    EBV infection (Focus Dx: VCA IgG 1:5120, EA (R+D) IgG >= 1:640, EBNA IgG >= 1:640)
    CMV infection (Focus Dx: IgG 11.4 was 20.4 before)
    HHV-6 infection (Focus Dx: IgG 1:1280)
    Mycoplasma pneumoniae (IgG > 5.00)
    Candida albicans overgrowth (positive stool test)
    Low cortisol (24hr test)
    Low-normal NK function (13 LU)
    Low ferritin
    Low vitamin D

    There are way too many negative tests to list, everything else lab-wise so far has been negative except here are some weird things that have been going on:
    • TSH has been decreasing quickly ever since I fell ill in January (measured many times in these months, has gone from 2.0 to now 0.7. In normal people TSH shouldn't change much at all in such a short period only slowly as you age). My free and total T3 and T4 are always in the high end of lab reference range so I seem to be becoming hyperthyroid because of this disease. Maybe this is some kind of adaptive response or dysregulation due to something else or maybe because an infection is causing some kind of thyroiditis?
    • Cortisol I wish I knew before I fell ill, I want to know whether it is the disease that is causing it to be so low. It was measured twice after I fell ill in January and has just gotten lower. Also wonder if this is an adaptive response, dysregulation due to something else, or due to infection.
    • ANA was 1:40 early on in the disease when my body seemed like it was fighting everything like crazy, now is negative, probably due to a huge immune response that resulted in some autoimmunity but now has settled.
    • 24-hr Holter monitor showed 800 PVCs/day early in the disease and I knew it because my heart was going nuts literally a week after falling ill I could feel it in my chest. This lasted for a few months and went away on its own without treatment, now no more PVCs.
    I'm treating it with:

    Valcyte (900 mg AM + 450 mg PM/day)
    Famvir (1000 mg x 2/day)
    Immunovir (500 mg x 2/day)
    Diflucan (200 mg/day for 6-12 weeks, then will do Nystatin after while still on Doxycycline)
    Doxycycline (100 mg x 2/day for 6 months)
    Hydrocortisone (5 mg/day)

    I have a CBC w/ diff and CMP every two weeks. Plus I take literally so many supplements every day too many to list here, basically everything I've researched that one needs to take for methylation/folate cycle, glutathione depletion, vitamin deficiencies, mitochondrial dysfunction, hypercoagulation, immune support, anti-yeast, etc etc. you guys know the drill.
    bigmama2, catly and Little Bluestem like this.
  11. Ema

    Ema Senior Member

    Messages:
    3,309
    Likes:
    3,532
    Midwest USA
    Did you test thyroid antibodies? It is possible to swing hypo to hyper in autoimmune thyroiditis.
    I think it probably is the disease causing the dysregulation as it is a fairly common finding in our population.
    Infection is a good guess because infections are intricately tied to cortisol metabolism in ways that are not totally understood (at least by me!)
    However, I would be wary of Diflucan because there are rare reports of adrenal inhibition (reversible) at doses as low as 200 mg.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2585724/
    leokitten likes this.
  12. leokitten

    leokitten Senior Member

    Messages:
    143
    Likes:
    304
    Washington, DC
    All my thyroid antibodies are negative.

    The low cortisol happened months before I started taking Diflucan, but thank you for the heads up though it is a very rare complication.
  13. Ema

    Ema Senior Member

    Messages:
    3,309
    Likes:
    3,532
    Midwest USA
    It's amazing to me how often supposedly rare complications show up in our population!

    I didn't mean that the Diflucan had caused the low cortisol, but that it *might* worsen it at doses higher than 200 mg. People with AI are often advised to take no more than 100 mg of Diflucan a day as a precautionary measure. Since you don't have AI, this may or may not apply.

    I know several people that alternate Diflucan with an OTC product called Candistroy.

    Ema
    Sea and leokitten like this.
  14. leokitten

    leokitten Senior Member

    Messages:
    143
    Likes:
    304
    Washington, DC
    Thank you Ema for all of this valuable information. I will definitely have a look since we know Candida can become resistant to Diflucan after a while and its good to alternate therapies. I forgot I also take large amounts of probiotics every day at the right times spaced far away from the antibiotic therapy.

    People should also know that melatonin potently inhibits cortisol production so those of you who are using it as a sleep aid at night if you are taking larger dosages it will definitely negatively affect your cortisol the next day!
    Sea and Ema like this.
  15. Wayne

    Wayne Senior Member

    Messages:
    2,199
    Likes:
    1,294
    Ashland, Oregon
    Hi Leokitten (and welcome to the PR forum),

    I just discovered this thread a few minutes ago, and have only read the first 20 or so posts; lots to catch up on. Just to mention briefly, I learned recently that different probiotics have differing degrees of mono-, di-, and polyglycerides, and that many pwCFS don't do well with di- and poly-glycerides, supposedly because they can keep the gut from healing. I believe there's information here on this board about the "Specific Carbohydrate Diet". --- Looks like a lively discussion going on here. Perhaps I'll catch up in a few days (if I'm lucky! :)) and try to contribute a bit.

    Regards, Wayne

    P.S. --- BTW, I do agree with your premise about how important it is to be aware of how much totally incorrect/wrong information and advice is given. To me, it's a pervasive problem that we need to confront at every turn in our lives, whether it has to do with health, politics, religion, etc. Many people often like to portray themselves as extremely knowledgeable in areas they really have little or no good perspective on.

    I've noticed little of that kind of attitude on this board however, with most posters sincerely trying to help others in whatever way they can. In posting here, it seems to be a given (without always explicitly stating such), that we're all so different, and that what works well for one person may or may not work for others.
    Sing and leokitten like this.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,837
    Likes:
    5,682
    Albuquerque
    leokitten

    I see you had low Vit D3. I'd second Ema's comment about checking more into that before doing high dose supplementation. There is an unusual pattern in a percentage of us where Vit D 25 is low and Vit D 1,25 is high. If you supplement on the basis of the low D 25 you can run the risk of raising Vit D 1,25 to a dangerous level--dangerous in that it often rises in tandem with calcium.

    Checking for SNPs in the Vit D receptors is another way to go but it won't give you information about what is actually happening now with your Vit D levels.

    Sushi
    leokitten likes this.
  17. leokitten

    leokitten Senior Member

    Messages:
    143
    Likes:
    304
    Washington, DC
    Sorry to ask, since the receptor and SNP tests are more difficult to get, why not just get a 1,25-Dihydroxy Vit D3 test in addition to the 25-Hydroxy?
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,837
    Likes:
    5,682
    Albuquerque

    That is the way I would go. Most any lab will test for Vit D 1,25, but most insurance doesn't pay for it. Still, it isn't a "break the bank" test.

    I had the receptors tested only when being evaluated for GcMAF.

    Sushi
  19. leokitten

    leokitten Senior Member

    Messages:
    143
    Likes:
    304
    Washington, DC
    Also forgot to add something very important to this list of strange changes in lab results:
    • Right after falling ill I lost my appetite completely for months, eating made me nauseous and many times vomit and even the thought of food made me feel ill. Even so, every time they measured my fasting glucose in the first months of the disease it was always in the 90s-100s which is abnormal. Then after this phase and more recently my blood glucose not fasting even just two hours after eating a big meal is always in the 60s.
    This disease caused a cascade of dysregulation. All of you know that TSH, thyroid hormones, cortisol, glucose, all of these are affect each other and are intimately related. For example I am pretty sure my glucose is low because cortisol became low...

    I wonder what is the first domino to fall right in the beginning of this disease before I knew what was going on and got any labs?
  20. Sea

    Sea Senior Member

    Messages:
    717
    Likes:
    818
    NSW Australia
    One of the things that works against researchers finding this critical info is the criteria that we be sick for six months before a diagnosis of ME/CFS is considered
    rosie26 and SOC like this.

See more popular forum discussions.

Share This Page