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!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Chronic Kidney Disease and ME/CFS

Discussion in 'Latest ME/CFS Research' started by Sing, Mar 12, 2011.

  1. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    422
    New England
    The article below was news to me, though it came out in the journal for Invest in ME from Autumn, 2007. It sounds very important for us to have tests like the GFR for kidney function.


    CFS/ME MAY BE MAJOR CAUSE of CHRONIC KIDNEY DISEASE IN NON-DIABETIC POPULATIONS
    By Dr. Tae H. Park

    OBJECTIVE OF STUDY:
    To prove that CFS/ME is a major cause of chronic kidney disease (CKD) in the general population.

    DESIGN:
    Cross-sectional study

    PATIENTS:
    Participants are 20 years of age and older 400 CFS/ME patients

    There is a sudden increase in occurrence of non-diabetic, chronic kidney disease patients in the last 3-4 years. In one report (Class et al), 39% of the non-diabetic population showed GFR below 80ml/min. Among them 14% showed GFR below 60ml/min. We collected data from our 400 CFS/ME patients who meet the Fukuda criteria of 1994 and calculated the GFR using the Cockcroft-Gauld formula.

    The results which we found in our study are striking. Among our 400 CFS/ME patients we found 88% of the patients showed GFR below 80ml/in and 46% GFR below
    60ml/min. If we subdivided stage 3 CKD patients (GFR below I60ml/min) then 38.4% showed GFR between 55-60, 33.6% showed GFR 50-54, 29% showed GFR 45-49.

    In stage 2 CKD classification (GFR below 90) our study showed 84.7% of CFS/ME patient met stage 2 criteria. Among stage 2 patients we further subdivided patients.
    The result is as follows - GFR 60-65 is 43%, 65-70 is 45%. Even in stage 2 classification we found 88% of CFS/ME patients were close to CKD. What this means is that these CFS/ME patients will be CKD patients in the near future without any diabetes or hypertension. A recent report showed 80% of CFS/ME patients are not diagnosed yet, with only 20% being diagnosed.

    If we bear these facts in mind, and if many of CFS/ME patients are misdiagnosed as having a psychiatric disease or as having HIV, then these non-diagnosed
    CFS/ME patients would contribute to a major risk factor of CKD in general populations. We suggest that every CFS/ME patient is checked for s-creatinine based GFR and that this is recorded. Furthermore, one should avoid medication like Nonsteroidal anti-inflammatory drugs (NSAIDs) to control pain and most importantly to avoid many tests using contrast media - CT scan, intravenous pyelogram (IVP) especially coronary angiography, even if they havenon-specific chest pains.
  2. Inflammarydiseases

    Inflammarydiseases

    Messages:
    1
    Likes:
    1
    Dr. Edward Hyman found indolent coccal bacteria present in urine of patients with a variety of different inflammatory diseases and when he killed the bacteria through antibiotic therapy, confirmed through daily clean catch urinalysis, the symptoms disappeared. Dr. Hyman died in 2003 and his work has been ignored by medicine.

    He published three peer reviewed articles in the 1990s, each setting forth the scientific proof for his discoveries: his huge Gram stain urinalysis improvements in his "Method" paper, the scientific proof using mathematics to prove why very low bacterial counts routinely occur for certain coccal bacterial, found in urine of inflammatory disease patients, and his "Marker" paper demonstrating the use of bacterial parts in urine a a marker for the inflammatory disease process.

    Dr. Hyman successfully treated hundreds of inflammatory disease patients over three decades. He successfully treated a number of chronic kidney disease patients and a number of chronic fatigue patients. I know such from personal knowledge, since I represented him for 20 yrs, during which time he tried to raise funds to conduct studies proving his work, and I used him as an expert in litigation involving attacks on his work. I know well the scientific basis supporting his work.

    How long will medicine ignore the obvious? How long will medicine let patients suffer needlessly? Hopefully this group will raise hell with the medical scientific community to get them to conduct the necessary studies to confirm Dr. Hyman's discoveries and to publish those results, with the hope some physicians will begin treating inflammatory disease patients, giving them back quality of life.
    merylg likes this.
  3. pamb

    pamb Senior Member

    Messages:
    168
    Likes:
    20
    Edmonton, AB, Canada
    Do you have links to Dr. Hyman's papers? Thx. This really does sound interesting.
  4. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    773
    Are you suggesting the CFS is caused by the bacterial infection, or that the bacterial infection may be a consequence of immune dysfunction in CFS?
  5. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    422
    New England
    Chronic Kidney Disease

    I want to add the following:

    1) Dr. Tae Park, who presented the study mentioned above on the association of ME/CFS and Chronic Kidney Disease, runs his own clinic for ME/CFS in Seoul, Korea.

    2) The National Kidney Foundation here lists the following as common symptoms with Chronic Kidney Disease:

    What are the symptoms of CKD?

    Most people may not have any severe symptoms until their kidney disease is advanced. However, you may notice that you:
    feel more tired and have less energy
    have trouble concentrating
    have a poor appetite
    have trouble sleeping
    have muscle cramping at night
    have swollen feet and ankles
    have puffiness around your eyes, especially in the morning
    have dry, itchy skin
    need to urinate more often, especially at night.
  6. ballard

    ballard

    Messages:
    64
    Likes:
    48

    I heartily agree with Sing that anyone with CFS should have their kidney function tested.

    I'd include an imaging test to check the size and condition of the kidneys, too. The earlier kidney disease is detected the better chance of slowing or stopping the damage. :D

    Also, many of us take NSAIDs which are known to cause kidney damage.
  7. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    773
    It looks to me as if chronic kidney disease patients are being misdiagnosed as having CFS.
  8. toddm1960

    toddm1960 Senior Member

    Messages:
    155
    Likes:
    3
    Rochester, New York
    What treatment is Dr. Park using and or what treatment did Dr. Hyman use? I wonder if this should be a treatment even if you don't have kidney damage?
  9. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    422
    New England
    What to do about kidney damage

    I think one might have kidney disease/damage misdiagnosed as ME/CFS or one might have both conditions. It makes a lot of sense to me that over time, whatever is causing ME/CFS can also be damaging the kidneys.

    Don't know what Dr. Park uses for treatment, as I have only read this summary from the Invest in ME journal from 2007. I imagine that if you have an active infection in your kidneys or bladder, that would be treated, but if what you have is kidney damage, from ME or whatever source, or kidneys which are too small to handle the load, that what you'd do is not to use prescribed or OTC drugs, or supplements, which damage the kidneys. Tylenol and the NSAIDS do, along with many other medications. I googled the names of what I use, then added "and kidneys" in the search box.

    I also imagine that not overeating or eating more protein than you really need would also help. Reducing the strain and backlog of material to be filtered is good because then there is not so much toxic material circulating around in the blood while it waits for a downsized kidney to deal with it.

    This is my bird's eye view of the issue right now, but I haven't conferred with a doctor or specialist as yet.
  10. WillowJ

    WillowJ Senior Member

    Messages:
    2,935
    Likes:
    2,365
    WA, USA
    Tylenol is also potentially harmful to the liver. However, both kinds of medicine are fine to use as long as your doctor knows you are using them so they can check your organ function.

    Testing kidney function is a standard test that is (or should be) done at your normal physical even for a healthy person. If you are using NSAIDS or any prescription medicine, they should make double sure to test your kidney and liver function.

    As long as your kidney and liver function are fine, you should not need to change your diet or avoid tests or needed medications. Please don't avoid tests--that seems not good advice, particularly avoiding heart tests when we also tend to have heart issues. Except I do avoid contrast dye, but I'm allergic.

    Even for totally healthy people (in the USA anyway) they will normally run creatinine, BUN, and now GFR to test your kidney, and Aspartate (or alanine) aminotransferase and biliruben for liver. I have known doctors to ignore a high reading, so double-check these yourself that none are flagged (or look them up on the Internet to see what other labs set for normal). I guess albumen contributes to picture of organ function as well.

    Other than the NIH link, these are just the first ones that came up on my search...

    http://kidney.niddk.nih.gov/kudiseases/pubs/yourkidneys/#tests

    http://www.worker-health.org/liverkidneyscreen.html

    http://www.mhchealthcare.com/index.php?/liver-function.html

    http://arthritis.about.com/od/diagnostic/a/kidneytests.htm

    http://www.healthtestingcenters.com/liver-function-test.aspx
    huh, interesting you can order these yourself

    http://www.faqs.org/health/topics/26/Kidney-function-tests.html
  11. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    422
    New England
    My doctor explained today how NSAIDS can damage the kidneys--kill off part of it. This happens when you take NSAIDS while in a state of dehydration. I expect that I/we can be dehydrated without realizing it, while apparently drinking a lot of fluids, due to another problem for me and some others: Partial Central Diabetes Insipidus in which the pituitary is not issuing the hormone to conserve salt and water in the body, and so, one is peeing and thirsty much more than is normal. My kidney function has already gone down and I have stopped NSAIDS.
  12. Daffodil

    Daffodil Senior Member

    Messages:
    2,778
    Likes:
    759
    WOW thanks for posting this. many people have suggested NSAID's to me over the years but i have never taken them. i am on tenofovir, which is probably contraindicated for people with kidney disease! dang
  13. Glynis Steele

    Glynis Steele Senior Member

    Messages:
    400
    Likes:
    84
    Newcastle upon Tyne UK
    Hi all,

    I don't know if this is relevant but here is a link regarding d-lactic acidosis, from Kidney International, "Perspectives in Clinical Nephrology". Many of you will know about the Sheedy paper where higher amounts of d-lactate producing bacteria were found in CFS patients, so this might be of interest.

    http://www.nature.com/ki/journal/v49/n1/pdf/ki19961a.pdf

    Glynis x
  14. Emootje

    Emootje Senior Member

    Messages:
    280
    Likes:
    95
    The Netherlands
  15. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    422
    New England
    Thanks, Everyone, for helping with good ideas and links I hadn't seen. With my low GFR (49 or 53 when a healthy adult has 90 and a rock bottom healthy value for the elderly is 60), I have been cutting back or eliminating meds which are hard on the kidneys. I haven't been sent to a Nephrologist or gotten that much info from my PCP yet, so I'm trying to find out on my own.

    I am wondering if the anti-fungals and antibiotics I took over a period of months when my bowel function was so bad and one doctor thought I had chronic lyme. I'd also had giardia several times years before, from exposure to contaminated water while camping, and been treated with Flagyl, which is very effective but toxic. My immune system was down then, I suspect, because I always got these infections even when no one else did. Camping or third world travel--my body couldn't handle those worlds of challenging microbes.

    My focus has been on what mistakes I have made via taking certain medications--and this may be part, even all, of the cause of the low kidney function I now have. But I can see from your information that it could be the primary dysfunctions of ME/CFS, such as low blood volume, etc. which could be causative, and not only the treatment of its symptoms by drugs.

    Nevertheless, I and others here with wearing-out kidneys, need to know the causes so we might protect ourselves better.
  16. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,606
    Likes:
    1,237
    Florida
    I haven't been diagnosed with chronic kidney disease but I have a history of kidney stones and chronic UTI's. I've had trace amounts of blood in my urine most of the time since getting CFS/ME in 1990.

    AZO with probiotics stopped the incontenance and it keeps the UTIs under control but I need to take 2 of these at least once a week. The probiotics found in AZO are said to be 35% stronger than the ones found in yogurt. I haven't taken this probiotic on it's own yet. Cranberry juice tears up my stomach so this is a good option. Regular AZO causes burning in bladder.

    O.forminges is a bacteria that is missing in anyone with kidney stones so there's a definite bacteria connection. They can't package o.forminges but it appears to be made in our bodies from good bacteria. I'm experimenting with taking 2 Megaflora once or twice a day and it seems to be helping my oxalate issues.

    not sure if this helps but wanted to give it a shot ... tc ... x

    ETA ... I forgot to mention that one of my first ME/CFS symptoms was waking up with a morning bladder spasm.
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,749
    Sth Australia
    Ive no idea what my kidneys are like or what my results are on kidney tests if Ive had them ... but I'd think that there is a high chance we are at high risk for kidney issues due to all the supplements and meds we need to take. How many of us havent taken pain killers regularly at times for this illness... not many of us.
  18. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    422
    New England
    Flouride and Kidneys

    I learned today that people with kidney disease, low kidney function, are only able to excrete a small percentage of the fluoride they ingest and can end up with bone disease from excess fluoride and worse kidney damage. It is important therefore, if you have low kidney function, to avoid fluoridated water and products as much as possible. Apparently avoiding fluoride can help heal the kidneys and improve their functioning too. Here is one of the many sites which came up via Google: http://www.fluoridealert.org/health/kidney/ This risk is apparently not well known.
  19. valentinelynx

    valentinelynx Senior Member

    Messages:
    194
    Likes:
    67
    Tucson
    I think I should point out that by the time you have the symptoms of chronic kidney disease, your creatinine level will be high enough that even a regular family practice doctor could tell you have a serious problem (and they would jump on it or be at risk of obvious malpractice). Creatinine is a basic lab done whenever you have basic labs done: the "Chem 7" is: sodium, potassium, chloride, CO2, BUN, creatinine and glucose. BUN and creatinine are specifically for diagnosing kidney problems. This is not to dismiss Dr. Park's findings. It is possible to have a low GFR, which would show as a mildly elevated creatinine, and have this overlooked as "slightly high" or "high normal". Bottom line is I don't think you can blame the standard symptoms of CFS/ME on kidney disease. However, we may be at higher risk of developing kidney disease. Makes sense in light of low circulating blood volume.
  20. GaryK

    GaryK

    Messages:
    71
    Likes:
    28
    Canada Niagara Falls
    I would also like to add something to this interesting topic. I'm being checked for Pheochromocytomas and neuroendocrine tumors, which are not easy to find. Many cases with Pheochromocytomas and neuroendocrine tumors are usually found Near the Adrenal Glands ..located on top of both Kidneys. They can be found as well in the Pituitary/brain area and as well Lungs, Liver and as well your Thyroid!

    Some symptoms are as follows fluctuating Hypertension like spikes in Blood pressure and stress/adrenal is very abnormal. Palpitations,sweating, nausea, anxiety and tingling in the extremities. Also an interesting symptom is Orthostatic Hypo tension with systolic blood pressure dropping greater than 20 mm Hg or a fall in diastolic blood pressure greater than 10 mm Hg upon standing. (RING A BELL?)

    These tumors are usually benign but some are cancerous. They are very slow growing type tumors and are sometimes difficult to find.
    One of the test for this is a 24 hrs Urine Test looking for primary Catecholamines which are dopamine,epinephrine (adrenaline), and nor epinephrine.

    800 cases a year are reported in the USA every year. Keep in mind they are difficult to find. I have a friend who after two years of many tests finally found the tumor near the Pituitary gland and is benign and can't be operated on.
    This type of hypertension cant be treated with normal type of Blood pressure meds.

    Any ways I give you food for thought on this rare disease.
    I also think its possible that ME/CFS can be connected to this disease as well (my opinnion)

    I'm studying the type of cells these tumors are found. (Enterochromaffin cells)

    So with this discussion Kidney Disease and ME/CFS it may not hurt to get checked for this disease.

    GaryK

See more popular forum discussions.

Share This Page