Continual Blood in Urine (from Kidneys)

I have been monitored for microscopic blood in my urine since early 2000. The doctor I was treating with back home always seemed to believe it was due to celiac/gluten intolerance as we could never find anything conclusive.... hmmm.. cpni???

I am now out of state with a urologist who has been treating me for 4 years.  Every time I have had an appointment there has been blood in my urine.  

 I just came from a visit with her (my urologist).... all has been tested (cystoscopy, kidney x-rays, urine cytology). Today, I pushed her for a "what are we going to do or conclude" about this?  The only confirmation that we have is that:

1) there are no cancerous or squamous cells; (which is great)  and,

2) the blood is definitely coming from the kidneys.

 I do have a hyperdense renal pole cyst, but she is not concerned about it nor does she believe it contributes to this problem.  I, of course, brought up CPN..... she knows I am on long-term ABXi... doesn't know much about the bacteria, but I could tell from our conversation she didn't understand about how it could be cryptic, nor does she believe in long-term ABXi.

 I gave her some printouts to review; BUT.... she is hesitant to (personally) refer me to a nephrologist and suggested my gp try to refer me since he is treating the CPN.  Per my urologist she stated the nephrologist would probably want to do a kidney biopsy.  I am in no pain, just want to be sure nothing is overlooked?

Are there any non-MSi'er's with similar problems that cleared after a couple of years on ABX?  I am leaning toward just monitoring this and praying it improves after I am more heavily into pulsing.

I already know I have an infectious spot in my colon... logic and the process of elimination leads me to want to believe this is CPN.

Any thoughts or input?

Wellness to all,

jeanneroz

I don't have any experience of this, but I would opt fot the wait and see option.   Epecially since the specialist does not seem concerned about it.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Jeanneroz,

My daughter has been in the hospital for a severe bacterial infection for nearly 2 weeks now and when I first brought her to the ER, the Dr said her urine was definitely full of blood. It's been that dark color off and on and I'm not sure if they've actually tested it for blood or they've just gone by the color. When I first saw it, I thought it was porphyriai... ?

She's on all sorts of IV abxi and oral ones too and I'm pretty sure her urine color changes from normal color to a more orange-red color are associated with die off as they keep culturing her blood.

I'm also concerned with what abxi they're using (mainly bactricidals) and wondering what sort of long term chronic problems will result after this.

If anyone has any suggestion on this part, please let me know.

Anyway, I wanted to let you know that my daughter's bloody urine changes almost daily or even during the day as she is being treated and the cultures change nearly as often from negative to positive so I think this is similar to what you're seeing in your urine and will prob clear in time as you resolve your infection. Just my thoughts. Smile

MPi for 3 1/2 yrs. NACi 1200 mg/2x day, Iodoral 25 mg, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Reenie, thanks for your input...I am hoping this does go eventually go away.   I'm sorry your daughter is having to experience what she is going through and hope they get it resolved. Is she still in the hospital?

I wish I would have requested the urine cytology to additionally check for CPNi bacteria (if they could).  The report states:

"Negative for malignant cells or dysplasia.  Broad cast(s) indicating severe renal tubular dilatation.  Dysmorphic erythrocytes indicating moderate glomerular and/or renal tubular bleeding.  Fungal spores and hyphae."

I'm wondering if there's any chance the  "fungal spores and hyphae" are actually CPN or if the cytology definitely confirms its a fungus.

Michele... thank you, too,... since I am not in pain I most likely will "wait and see".  My urologist isn't concerned about the renal cyst but she doesn't have a clue about the above. 

Jeanneroz ~CPN diagnosed and started protocol  4/2007, also have  HHV6, EBVi.  CFIDSi/FM diagnosed: 6/07; Protocol:  200 mg/doxyi daily~ 250 mg AZITH M/W/F ~1st Tindi pulse 4/17/08- 1 250 mg. tab for 2 days. supplementsi<

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

jeanneroz,  I would focus on the "fungal spores and hyphae" part of that report.  I would think that the blood could be entering the kidneys through the hyphae.  Do you have any symptoms of yeast overgrowth these days besides that part of the report?  If you're not currently doing the Whole Approach protocol these days, maybe it would be a good time to get back on it again.  Full circle---you recommended it to us, and now I'm recommending it back to you!

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Cypriane,

Thanks for those thoughts on the hyphae..... the wiki link <on hyphae was interesting and your comment that the blood could be leaking from them seems logical.....

I haven't had any symptoms of yeast (other than a BV.....hmmm an inbalance of the vaginal flora causes by abxi?).  I just started the wholeapproach (bentonite, psyllium and capryol combo) again this past week for my colon problems.  I need to be more diligent with this. Thanks for reminding me and thank you for your input re the hyphae!

Jeanne

Jeanneroz ~CPN diagnosed and started protocol  4/2007, also have  HHV6, EBVi.  CFIDSi/FM diagnosed: 6/07; Protocol:  200 mg/doxyi daily~ 250 mg AZITH M/W/F ~1st Tindi pulse 4/17/08- 1 250 mg. tab for 2 days. supplementsi<

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

A few years ago I had blood in my urine. I had testing at a nephrologist. At the time I hadn't heard of Cpni. Jeanneroz, thanks for bringing this up. Maybe it is porphyrins. Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Hi Jeanne, I will put on my thinking capi this weekend.  So glad you shared this with the group.  Hoping to hear more from you here again.

Louise

CFSi. CPnPositive. BbPositive. WheldonCAP began6/24/07. NACi,Doxyi, Roxi,FullTiniPulses. Intermittent Cholestyramine,1-2packets, at bedtime,most often with pulses,and as needed, for Phorphoria & liposacaride Endotoxini Die-OffExperiences.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Hi Jeannie,

thanks for the update.  I am glad you don't have any pain & the specialist doesn't seem too concerned.  You have some ideas noted above which sound logical.  I haven't been able to think of anything to help other than keep the yeast down to a dull roar!

By your writing it seems like you are doing better in the fog department!

Blessings, you are in my prayers.  Have you read any of the Jim Eldredge books?

CFIDSi/ME 26yrs, FMSi, IBSi<, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

I had a lot of Urine problem caused by CPNi. Thats for sure can cause bad urine problems. I wasnt bleeding in urine, but i did bleeding a lot in colon a lot before. Now it is much better.
doxy200, azith250, NACi 2400, Metroi 1250(once a month), supplementsi, vitaminsi.

Comment viewing options

Select your preferred way to display the comments and click "Save settings" to activate your changes.