Chronic Kidney Disease and ME/CFS

[Sing]

Thanks, Gary K for your information and Valentinelynx too. I would never blame ME/CFS on chronic kidney disease but just see the low kidney function as a consequence of having ME/CFS for years, and also from taking various medications to treat it. Something to keep a careful eye on as we get older.

 

[valentinelynx]

Re: pheochromoctyoma. One of the zebras of medicine, but one that does occur. Who should be "ruled out" for pheo? People with hypertension. This is particularly true if blood pressure medicines aren't working, or if the hypertension is episodic and associated with the symptoms GaryK mentioned. BP can be very high (250/150) which causes headaches and chest pain if you aren't used to it. (Yes, I've seen people with untreated hypertension who are "used" to this!) I would think that having high BP and high heart rate at the same time would be a clue to excessive epinephrine/norepinephrine as released by these tumors, but don't see that mentioned (of course that combination also associated with fear and pain!). Not all pheo's are epidosidic releasers of these hormones, though, so persistent hypertension is possible, too. Once suspected, you have to find where they (or it) are in the body, which can be the hard part. Embryologically they are associated with the adrenals, which is why they'd be near the kidneys in most, but not all cases. Bottom line, if you have hypertension and these other symptoms, might be worth looking into. No high BP, no, forget it, it's not pheo.

 

[GaryK]

Thanks valentinelynx,

I find this adds to more interesting info on the pheochromoctyoma and erratic hypertension issues. You are so right it can be hard to find . In my case I do hope they at least can get a trace of it. I am also wondering if this has led to my Hypothyroidism starting.

GaryK

 

[mtnbibliophile]

Thanks for all this information. I just learned that I've had Chronic Kidney Disease for over a year. IMPORTANT NOTE: do NOT rely on your doctor to notice this, especially if you have more than one doctor. An isolated result under 60 doesn't mean anything by itself, but you and your doctor should make sure to re-test it frequently for the next several months. It should NOT be completely ignored, as two of my doctors did in the last several months.

Basically, a GFR that remains under 60 for three consecutive months qualifies you for a diagnosis of Chronic Kidney Disease.

GFRs (Glomerular Filtration Rates) appear on most standard Complete Blood Count tests, so you can keep track of them on your own. If you want to go back to previous blood tests and check but there's no GFR stated, it's almost certain that BUN and creatinine will appear. There are websites that show you how to convert those to GFRs.

The National Kidney Foundation website states twice on its introductory page that early detection makes a huge difference in the success rate of treatment, so please make sure to keep an eye on this.

A few of the key symptoms of CKD are not related to CFS/ME, such as dry or very itchy skin, so it's a good idea to be aware of those indicators too.

 

[Strawberry]

This is so interesting to come across today! I was told 25 years ago that my kidneys were damaged from excessive Ibuprofen use. I don’t take pain pills, and try to avoid anything that affects my kidneys. I was just put on Amlodipine and was noticing some issues, and through google found that it isn’t good for people with lower kidney function. I have not ever had blood tests ran since 25 years ago? And to think it could be the cause?

(from one of Sing’s posts)
feel more tired and have less energy YES
have trouble concentrating YES
have a poor appetite SOMETIMES
have trouble sleeping YES
have muscle cramping at night YES
have swollen feet and ankles NO
have puffiness around your eyes, especially in the morning NO
have dry, itchy skin YES
need to urinate more often, especially at night. NO

Need to go knock on my doctors door.

 

[WillowJ]

yes, never rely on your doc. Always read your tests yourself. Stuff gets missed. Sometimes they think they called you. Sometimes some other reason.

GFR "normal" values may vary based on your own personal info.

I think your doc gets an F for never testing kidney function once in 25 years, even after you started having symptoms, Strawberry.

Blood and UA testing is needed to check kidney function.

 

[wastwater]

I have blood in my urine mircoscopic from time to time with no explaination I think it maybe due to having a collagen building block missing ie genetic

 

[Valentijn]

I have blood in my urine mircoscopic from time to time with no explaination I think it maybe due to having a collagen building block missing ie genetic

I've had traces of blood in every urine sample since I got sick. But it can happen due to inflammation, which I've had the entire time.

 

[trev343]

@Valentijn don't you find it peculiar that Mycotoxins specifically Ochratoxin A (found in 83% of CFS patients by Dr. Brewer) causes renal damage? I think the link to mold illness is getting stronger.

 

[Valentijn]

@Valentijn don't you find it peculiar that Mycotoxins specifically Ochratoxin A (found in 83% of CFS patients by Dr. Brewer) causes renal damage? I think the link to mold illness is getting stronger.

Uh, no, since none of the tests done have specifically indicated kidney damage. And it's one of the more basic things which even useless doctors routinely test for, and it would've been picked up if it was happening regularly in ME patients.

 

[tuhumom]

I feel for everyone with kidney problems. It's almost impossible to find honest answers when you are trying to get better. Fortunately, I came across some natural remedies that reversed my kidney disease and saved my life. This is one of the places where I got some good information.

Best of luck to everyone!

 

[CFS_for_19_years]

I feel for everyone with kidney problems. It's almost impossible to find honest answers when you are trying to get better. Fortunately, I came across some natural remedies that reversed my kidney disease and saved my life. This is one of the places where I got some good information.

Best of luck to everyone!

tuhumom, can you share what those natural remedies were that reversed your kidney disease?
How did you know you reversed your kidney disease - did you see improvement in lab values such as creatinine and GFR?

 

[knackers323]

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.

Anyone looked into Dr Hyman and his theory's, treatments?

 

[knackers323]

Anyone looked into Dr Hyman and his theory's, treatments

@Elph68 what do you think?

 

[knackers323]

What do you make of this @Elph68[/USER

This is the same kind of bacteria your talking about isn't it? Have you tried a test like this or a pcr test, where they look for the DNA of the organism in your blood? I know a test like this is available. It may help you get it recognised by the drs?

Does anyone know if abnormal eGFR levels may be an indicator of this?

Anyone had abnormal eGFR levels?

 

[Elph68]

@Elph68 what do you think?

Hey Knackers .... I better check this out.

Cheers

 

[South]

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 did a study on this, on patients with Gulf War illness who had fatigue, cognitive dysfunction and somatic pain. I haven't had time to find out if the study led to treatment for other people by any other doctors though:

http://www.cnn.com/US/9702/19/gulf.war/

http://www.gulflink.osd.mil/medsearch/Treatment/DoD67.shtml

 

[knackers323]

Could this be a cause for frequent urination?

@Elph68 have you had a chance to look into this yet?

 

[November Girl]

I just checked my labs. I have GFR numbers for the last 2.5 years, with a total of 5 tests. I had a GFR of 50 at the beginning. It continued to increase to a high of 64 in January 2016.
The next test was May of 2017. I showed a GFR of 50. Over the years, I've taken a lot of supplements. I'm sure some of them helped the kidney function. I suspect it will continue to improve if I cut back on the NSAIDS
I've also taken a lot of NSAIDS, particularly in the year before the last test, where my GFM was down 4 points to 60.

My PCP said that 60 is about normal for my age, which is also 60. Of course most people slow down and feel worse with age, so normal doesn't mean good. I have 2 non-CFS medical conditions that require the use of NSAIDS. I hope to be healthy enough in the near future to go through the lengthy process to correct my TMJ. Right now I couldn't handle the necessary weekly trip to the dentist. Ironically the NSAIDS I take to keep the ear pain tolerable also trigger a bit more deterioration of the joints on each side.