HealingWell
Search Close Search
☰

Kidney GFR out of range!!! Advice

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/29/2018 1:26 AM (GMT 0)
Has anyone had that issue?


Interesting it's happening now. When I was taking antibiotics daily for about 2 years, it was in range.

Now I'm taking them 8 days a month and my kidneys wanna pack it in?

The range : > 60

Prior to this test, my value has been from 103 to 65 (usually between 68 and 95 )

Yesterday it was 57.

At a glance...doesn't look to be worrisome. But when you read about it (kidney foundation)

90 is Stage 1 kidney disease

89-60 Stage 2 kidney disease

59-45 Mild to Moderate Stage 3 kidney disease.


Why is the range set at 60???

Because the tests between 60 and 90 aren't accurate/reliable....or something like that.


I'm wondering if the Rifabutin is making the difference....or the Dapsone?

I did read about Rifampin causing acute Kidney disease...where it resolved after discontinuation.

My Dr. doesn't do the Creatinine and other kidney functions. I'm seeing her tomorrow and I'm asking for those and a re-test for the GFR

I also read an indicator is if you have WBC and Protein in your urine.
I haven't done a pee test in a while but a couple years ago I remember that it did show wbc and protein and maybe even rbc.

And the past couple of weeks, I've felt a 'shift' for the better...thought I was getting close(r)....
Posted 8/29/2018 1:34 AM (GMT 0)
.....this is freaky


about a month ago...I was watching a story of someone donating a kidney to save a life.

I looked at my husband and asked if he'd give me one of his...if I needed it.

He said "In a heartbeat"
Posted 8/29/2018 2:17 AM (GMT 0)
awww u got a sweet 1...they filter a lot ...ask dr j but see if you can add chanca piedra and palo azul tea , cranberry will change ph but likely crystals need be flushed , are you drinking at least 1/2 your body weight in oz of purified water a day ?
Posted 8/29/2018 2:33 AM (GMT 0)

bluelyme said...
awww u got a sweet 1...they filter a lot ...ask dr j but see if you can add chanca piedra and palo azul tea , cranberry will change ph but likely crystals need be flushed , are you drinking at least 1/2 your body weight in oz of purified water a day ?

Doing the calculation - I’m a bit shy - I’m going to up my water intake.
Posted 8/29/2018 2:38 AM (GMT 0)
gfr is estimated on creatinine levels or something based on race/ age . the nephrologist said he'd have to do a scan with dye to see vasculature on kidneys if it had been detached after bactrim. i opted out
Posted 8/29/2018 3:09 AM (GMT 0)

bluelyme said...
gfr is estimated on creatinine levels or something based on race/ age . the nephrologist said he'd have to do a scan with dye to see vasculature on kidneys if it had been detached after bactrim. i opted out

Creatinine: 96 (45-90)

Yah - I had dye injected into my vein to highlight my pituitary gland on an mri once.

Don’t want to do that again.

Some celebrity’s wife had a bad reaction to the gadolinium and took several years for her to get her health back.

Edited: I DID have Creatinine tested.
Posted 8/29/2018 3:58 AM (GMT 0)
My GFR has done that a handfull of times during treatment. My LLND has had me pull back on treatment and take this ghastly tasting stuff called Two Treasures. It's made by Heron Botanicals in Kingston WA. They have a website. It happened with Mepron.
Posted 8/29/2018 4:17 AM (GMT 0)

jrpsf said...
My GFR has done that a handfull of times during treatment. My LLND has had me pull back on treatment and take this ghastly tasting stuff called Two Treasures. It's made by Heron Botanicals in Kingston WA. They have a website. It happened with Mepron.

Because it happened kind of quickly on this protocol...I'm wondering if it really is from the Mepron....my kidneys just had enough of that yellow paint.
I had only done one week on the persister protocol when I got tested.

That reminds me - I need to send my test results to the J clinic Nurse.


Jrpsf - did you have other kidney function tests done with the GFR? like creatinine and BUN?
Posted 8/29/2018 4:33 AM (GMT 0)
Yes, Full CBC panel and creatinine and bun were fine on mepron. I get blood work every 30 days.
Posted 8/29/2018 5:31 AM (GMT 0)
I lied - Creatinine was tested... and it’s out of range too.
Posted 8/29/2018 12:58 PM (GMT 0)
Girlie - I've posted on this recently in dealing with same issue. My GFR and creatinine levels have been "off" for years.

GFR seems to stay about 57-58. When I backed off on protein, that number went up to as high as 68 and last was 59. LLMDs I have seen have never seemed worried.

Recently have gone through a lot of testing on kidney, including imaging, because of, yet another, experience with frequent urination. The frequent urination has gotten much better after several months. All kidney imaging showed normal sized kidneys with no artery blockage.

My creatinine levels have been as high as 1.64 (1.27 high normal for my age and sex). When I lessened protein, it also helped creatinine levels, which do effect GFR. Last couple have been at 1.17 and 1.30.

Some of my symptoms of Lyme and co-infections have gotten a little better, except for anxiety in morning and low-grade fever EVERY afternoon between about 2:30 pm and 6:30 pm. Like clockwork.

But kidneys seem to have gotten better and imaging is showing no damage. about to have another blood test done for GFR, creatinine (comp panel) and other tests. My guess is they will be better.

Have read a lot on this and have seen past posts with same issues. Understand it is worrisome. Maybe for your peace of mind, have it checked out with GP and nephrologist, if your insurance covers it well.

It's always something, so we just knock it down one by one. Don't know what your protein intake is, but that and meds overwhelming kidneys may be playing big role.
Posted 8/29/2018 4:25 PM (GMT 0)

running wild said...
Girlie - I've posted on this recently in dealing with same issue. My GFR and creatinine levels have been "off" for years.

GFR seems to stay about 57-58. When I backed off on protein, that number went up to as high as 68 and last was 59. LLMDs I have seen have never seemed worried.

Recently have gone through a lot of testing on kidney, including imaging, because of, yet another, experience with frequent urination. The frequent urination has gotten much better after several months. All kidney imaging showed normal sized kidneys with no artery blockage.

My creatinine levels have been as high as 1.64 (1.27 high normal for my age and sex). When I lessened protein, it also helped creatinine levels, which do effect GFR. Last couple have been at 1.17 and 1.30.

Some of my symptoms of Lyme and co-infections have gotten a little better, except for anxiety in morning and low-grade fever EVERY afternoon between about 2:30 pm and 6:30 pm. Like clockwork.

But kidneys seem to have gotten better and imaging is showing no damage. about to have another blood test done for GFR, creatinine (comp panel) and other tests. My guess is they will be better.

Have read a lot on this and have seen past posts with same issues. Understand it is worrisome. Maybe for your peace of mind, have it checked out with GP and nephrologist, if your insurance covers it well.

It's always something, so we just knock it down one by one. Don't know what your protein intake is, but that and meds overwhelming kidneys may be playing big role.

Thank you for posting! Good to hear that you've had improvement and it's not permanent.
That makes me feel better!

I've been in range for the entire 4 years of treatment - including two years of daily antibiotics....so I'm finding it odd that now my kidneys are affected. (Only taking meds 8 days a month)

I'm seeing my 'regular ' today to discuss.
Posted 8/29/2018 6:59 PM (GMT 0)
I'd check that if your numbers were ok on mepron. If they were and this happened that quickly on the dapsone then you might be allergic or not your body may not tolerate it. That happened to me on sulfa drugs.
Posted 8/29/2018 7:28 PM (GMT 0)

jrpsf said...
I'd check that if your numbers were ok on mepron. If they were and this happened that quickly on the dapsone then you might be allergic or not your body may not tolerate it. That happened to me on sulfa drugs.

Yes, my numbers were good on Mepron.

Either Dapsone or Rifabutin.

Do allergic reactions cause kidneys to fail though? I didn't get anything else to indicate an allergic reaction...I would think I'd have some kind of noticeable response - ie rash...or?
I'm thinking maybe Dapsone (plus Daraprim for a couple days) was just too toxic?
Posted 8/29/2018 8:37 PM (GMT 0)

Girlie said...

jrpsf said...
I'd check that if your numbers were ok on mepron. If they were and this happened that quickly on the dapsone then you might be allergic or not your body may not tolerate it. That happened to me on sulfa drugs.

Yes, my numbers were good on Mepron.

Either Dapsone or Rifabutin.

Do allergic reactions cause kidneys to fail though? I didn't get anything else to indicate an allergic reaction...I would think I'd have some kind of noticeable response - ie rash...or?
I'm thinking maybe Dapsone (plus Daraprim for a couple days) was just too toxic?


Allergic may not be the right word to use. One of those drugs may be toxic for your body. Most people are fine with Sulfa drugs. I'm not. When we narrowed down that it was the sulfa drug that was causing the issue I mentioned it to my mom. She told me she also has issues with sulfa meds. That makes me believe that genetically I can't process them properly. That may be the case for you in this instance.
Posted 8/29/2018 9:06 PM (GMT 0)

jrpsf said...

Girlie said...

jrpsf said...
I'd check that if your numbers were ok on mepron. If they were and this happened that quickly on the dapsone then you might be allergic or not your body may not tolerate it. That happened to me on sulfa drugs.

Yes, my numbers were good on Mepron.

Either Dapsone or Rifabutin.

Do allergic reactions cause kidneys to fail though? I didn't get anything else to indicate an allergic reaction...I would think I'd have some kind of noticeable response - ie rash...or?
I'm thinking maybe Dapsone (plus Daraprim for a couple days) was just too toxic?


Allergic may not be the right word to use. One of those drugs may be toxic for your body. Most people are fine with Sulfa drugs. I'm not. When we narrowed down that it was the sulfa drug that was causing the issue I mentioned it to my mom. She told me she also has issues with sulfa meds. That makes me believe that genetically I can't process them properly. That may be the case for you in this instance.


I did react to Bactrim - with some blisters.

I'm wondering if too much Licorice can be harmful to the kidneys. A day prior to the test I binged on Licorice candy...
Posted 8/29/2018 11:18 PM (GMT 0)
Saw my Dr (GP) and she’s having me do the creatinine and gfr again. She doesn’t want me to wait 4 weeks for my next scheduled lab test,
She asked if I fasted prior and I had - she figures I may have been dehydrated to cause the wonky numbers

Hope she’s right.

The J clinic hasn’t contacted me about the results.
Posted 9/2/2018 5:36 PM (GMT 0)
As mentioned before, my GFR and creatinine levels have been off for a number of years.

When things get worse, frequent urination has me going all day and night. During the most recent episode of that (months), my numbers really went out of whack and tests actually showed protein in 24-hour urine. Only once. Also, other showed diluted urine and some electrolytes were low. This also happened last year with frequent urination.

It seems I was drinking so much water to compensate, it caused more problems. When I didn't, dehydration played a role. Catch 22.

Since the protein in urine showed in mid-late June, it has not happened again. Kidney scan shows normal size and no blockage. Urine tests normalizing. Getting another blood panel and urine done this week as i am still paranoid about it. But kidney specialist said things aren't showing signs of kidney disease.

Point is, seems one problem leads to another. Since more herbs and treatment, at least some tests are better. Dizziness is still a problem, as well as afternoon fever. But it's hard not to worry, which doesn't help us.

Lot of others have had low GFR and high creatinine. Die off too much for kidneys? Meds/herbs? Always a guessing game.

The dehydration your doctor mentioned sounds very feasible.
Posted 9/2/2018 5:41 PM (GMT 0)
Thanks for your input running wild. Good to hear what your kidney specialist said. That must put your mind at ease.



I will prob do the re-test tomorrow or Tuesday...so tired of getting those tests done...I have a phobia of any and all needles...have had to ignore that since treating lyme.

It didn't help when the lab tech hit a nerve...and kept doing the draw. I had nerve pain in my wrist area for several months after that.


I checked back to 2014 - all lab tests for GFT/Creatinine and never out of range before.

Keeping my fingers crossed.
Posted 9/2/2018 5:59 PM (GMT 0)
It's hard not to be concerned. Think after having Lyme and so many tests, not to mention how many doctors treat you like you're crazy before diagnosis (and some after), can put some PTSD symptoms in us.

Even though the kidney specialist said things are okay, I still get concerned when symptoms like back pain, dizziness, etc... are there. Then I have to remind myself about Lyme and how much it can do.

That's why I am looking forward to the blood test this week - to add to peace of mind. You knowing someone else, or a number of people, have have similar can add to yours. Or at least make it better.
Posted 9/4/2018 10:13 PM (GMT 0)
Any update Girlie?
Posted 9/4/2018 11:10 PM (GMT 0)
Lol - going tomorrow morning - I keep putting it off.
Posted 9/4/2018 11:23 PM (GMT 0)
Wishing you luck Girlie! I bet it is due to dehydration as your doc said.
Posted 9/5/2018 12:39 AM (GMT 0)
Being a Physician Assistant for 36 years I can tell you one lab result does NOT make a diagnosis. I've seen my own values vary as well. Continue to hydrate well and follow up.
Posted 9/5/2018 1:12 AM (GMT 0)
Good luck Girlie!
✚ New Topic ✚ Reply
12