Lymes and Nephrotic syndrome

[Kerkoke]

I recently saw a post on here where someone was asking the question connecting these two problems together....I am wondering what other people have come across?  My daughter was diagnosed with Minimal Change Disease...which of course is idiopathic.  I am wondering if Lymes could have been her "cause".  Any thoughts or theories or?  would be greatly appreciated!


This discussion is related to Nephrotic Syndrome - Tick Bites?.

[Ricobord]

One more thing... steroids suppress the immune system. People who've had steroids don't necessarily produce sufficient antibodies to show a positive on an antibody test.

I really encourage you to get your daughter to a LLMD (Not an infectious disease doc) who will test her at IGeneX and do a full assessment.  Not everything that looks like Lyme is Lyme, but I have zero trust in mainstream doctors to accurately find Lyme when the CDC protocol for testing is negative.  They have been taught to follow the tests, even though extensive evidence shows those tests frequently produce false negatives.

The cost of a LLMD and IGeneX testing might put you off.  I encourage you to go anyway. Your daughter's health is worth it!  It's not a waste if you spend the money, the LLMD concludes it's not Lyme, and you have peace of mind that you haven't missed it.  I encourage you not to leave this stone unturned. If it is Lyme, then it's treatable!

[cave76]

It IS heartbreaking to hear of ill children/teens---- our hearts go out to you both.

You mentioned an ELISA test coming back negative. Since the best/only lab that does specialized testing for Lyme doesn't use the ELISA I know that the test wasn't sent to Igenex Labs.

Consequently----- that test result doesn't mean much at all. ELISAs have an error percentage of between 30 and 60% but they're used by all the labs that aren't Igenex!

So---- what does that mean? It means you still don't know if your daughter has Lyme or not. I'm not saying I think she does (or doesn't) but it's unknown.

I know you have other issues worrying you right now-----the kidney disease---- and you may think that Lyme is small potatoes. In a way it is-----but once your daughter gets the kidney problem (mostly) resolved perhaps it might be time to investigate Lyme further?

[cave76]

The Case Reports, above, are published under Creative Commons licensing so the full abstract (or the entire article) can be posted here.

I post it here so other members can read it.

What I find curious is this sentence in the abstract:
"However, in infected dogs, Lyme nephritis is present in 5–10% of cases"

So----- does that mean that dogs were investigated more thoroughly or often than humans? (They wouldn't be under the IDSA constraints!)

I know that animals and humans don't always react in the same ways but----- since naive beagles are often used in research and because we can't put humans through the same tests that are used on dogs/beagles-----that's all we have to go on.

Here is the abstract:

Case Reports in Nephrology
Volume 2012 (2012), Article ID 294532, 3 pages
http://dx.doi.org/10.1155/2012/294532
Case Report
Minimal-Change Disease Secondary to Borrelia burgdorferi Infection
Ewa Kwiatkowska, Edyta Gołembiewska, Kazimierz Ciechanowski, and Karolina Kędzierska
Department of Nephrology, Transplantology and Internal Medicine, Pomeranian Medical University, 70-111 Szczecin, Poland

Received 21 November 2011; Accepted 26 January 2012

Academic Editors: E. Comploj and K. Hirayama

Copyright © 2012 Ewa Kwiatkowska et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

Lyme borreliosis is a chronic illness caused by tick-transmitted spirochete Borrelia burgdorferi. Borreliosis can be extremely threatening if it is not diagnosed and treated in early stages. Kidneys are not typically involved in the disease. However, in infected dogs, Lyme nephritis is present in 5–10% of cases. It is associated with rapidly progressing renal failure.

Histopathological examination shows mesangial proliferative glomerulonephritis with diffuse tubular necrosis, (Dambach et al. (1997)). In available literature, there were reports of human's glomerulonephritis associated with Borrelia burgdorferi infection.

These cases refer to membranous and mesangial proliferative glomerulonephritis (Kirmizis and Chatzidimitriou (2010), Zachäus (2008), and Kirmizis et al. (2004)).

In this paper, we present the case of minimal-change disease (MCD) as a result of Borrelia burgdorferi infection.
******************

http://www.hindawi.com/crim/nephrology/2012/294532/abs/

[JackieCalifornia]

Because steroids are contraindicated in Lyme disease, I would check with a Lyme specialist before proceeding with steroid treatment.

Lyme being a bacterial infection, and steroids suppressing the immune system which would fight a bacterial infection, taking steroids when one has Lyme can cause further problems by sidelining the body's natural reaction to attack a bacterial infection such as Lyme.

Best wishes -- let us know what you find out and how it goes, if you have a moment.

[JackieCalifornia]

Just sent you the following as a private message, in case the 'bot here blocks the URL;

----------------------------------------------------------

This topic is beyond my understanding, but the article may be of interest to you.  

I note in passing that the author(s) cite in passing to Alan Steere and some of his colleagues, which may or may not color the article's conclusions .... since Steere & friends are well known for viewing Lyme as a not-a-big-deal after a couple weeks of antibiotics, but referencing that view may not affect the larger point of the article.

http://www.hindawi.com/crim/nephrology/2012/294532/

(if the 'bot blocks the url, you can search for the name of the article and it should pop up)
---------------------------------------------
Case Reports in Nephrology
Volume 2012 (2012), Article ID 294532, 3 pages
http://dx.doi.org/10.1155/2012/294532

Case Report
Minimal-Change Disease Secondary to Borrelia burgdorferi Infection

[Kerkoke]

Our last appt I asked if we could test for it...the Elisa came back negative :(. Not that I want her to have it but really would like a "non idiopathic" cause.   Again she is relapsing with high protein in her urine with edema and is now back on prednisone.  Have an appt with new doc tomorrow and another new doc on the 15th....hoping for good results and opinions....having your child sick is awful when she should be enjoying high school and homecoming, not drugs with weight gain, sigh....

[Marinella82]

I have gotten Autoimmune Autonomic Neuropathy from Lyme and that is considered a rare autoimmune disease so anything is possable.

[cave76]

I'd never heard of that disease------ so I had to go reading up on it a bit.

I find it hard to add to Ricobord's excellent and concise reply.

I did go searching a bit on PubMed and other sites for it. I used Nephrotic Syndrome for a search term also since they may be related in some sense. Also MPGN.

[Other search terms, which I did not use, are Nil disease; Lipoid nephrosis; Idiopathic nephrotic syndrome of childhood. ]

" MPGN (membranoproliferative glomerulonephritis) has been associated with a number of chronic infectious
etiologies.There have been only two cases reported in the literature so
far showing association between MPGN and LD. It is possible that
immune-complex type MPGN and NS may be manifested as a late
complication of LD. "

http://www.kidney.org/news/meetings/clinical/pdf/Abstracts2008/GlomerularDisease/Rawal_MPGN932.pdf

*******************************************
"Received August 21, 2012.
Accepted September 24, 2012.

Abstract

The association of membranoproliferative glomerulonephritis (MPGN) with Lyme borreliosis has only been reported for the C1q-negative subtype. A 64-year-old male presenting with rising creatinine, nephrotic syndrome and monoarthritis few months after a tick bite was noted to have mixed cryoglobulinaemia, a positive borrelia western blot and ‘full-house’ pattern MPGN with interstitial granuloma. Findings resolved with prednisolone and doxycyclin therapy. The histology is consistent with MPGN secondary to cryoglobulinaemia, which has most likely been caused by borrelia infection. ‘Full-house’ pattern MPGN may result from Lyme borreliosis through cryoglobulinaemia and may be treated successfully with the appropriate antibiotic therapy."
http://ckj.oxfordjournals.org/content/6/1/77.abstract
*********************************

Here are just two (of many more) articles that show a possible connection between MCH and Lyme.
http://www.medhelp.org/posts/Maternal/Nephrotic-Syndrome---Tick-Bites/show/860640
http://ndt.oxfordjournals.org/content/26/9/3054.full

What breaks my heart and gets up my nose TREMENDOUSLY! is how doctors/hospitals don't go the whole nine yards in trying to diagnose. The saying "One nail, one hammer" definitely applies there. I'm finding it more and more difficult to swallow the 'we've looked everywhere' excuse when the 'everywhere' is only their area of expertise or, more likely, their particular agenda. And the habit that doctors often have of closing the chapter on MCH (fini, done, moving on) and then  reading about other diseases, like Lyme, in another chapter and never connecting the two! Arghhh!

If someone like me, no real medical training, can find those articles------ then why not Dr. G_d?
I don't mean to  imply that the child DOES have Lyme------ but it is definitely a possible. And a full investigation should be made.

I'm so sorry for your daughter and you. I'd be willing to find more articles that might possibly connect LD to MCH or other kidney problems if you would like  me to.

[Ricobord]

I don't know anything about Minimal Change Disease, except what I just read on Wikipedia.  I do know that tick borne diseases can affect the kidneys.  Since one theory on the original of MCD is infection, it is certainly worth getting her a battery of tests for possible infections.  It's possible her doctors will scoff at Lyme as a possibility, but even if they do run blood tests, she can easily test false negative.  Unfortunately for some Lyme patients, most doctors have been taught that a negative excludes it.

Lyme Disease can occasionally affect the kidneys. Mine have shown stress for a while. I think some of the stress is from all the medications I've been on, but I think the reason they're not handling the medications well is because of the infections.  I also have Bartonella and Babesia.  Babesia is also known to affect the kidneys.  (Note: Babesia tests are quite unreliable. I think about half of Babesia patients test false negative.)

I saw a nephrologist at one point, and after telling her about some case studies I read where Lyme caused kidney trouble, she proceeded to give me a speech about how Lyme doesn't affect the kidneys, and so it must from be my medications.  I just stopped talking at that point because she clearly wasn't listening. I would have respected her opinion more if she'd acknowledged it was possible.  I didn't make up those case studies! (There's at least one in PubMed where they label it "Lyme nephritis."  There's another one out of Poland.)

The red flag I saw in the Wikipedia entry is that MCD is often treated with oral steroids.  If your daughter has ANY other symptoms that aren't explained by the kidney issues, then I would get her thoroughly tested for infections before starting her on steroids.  If she does have an infection, the steroids can make it worse.

For Lyme testing, IGeneX is the best.  They find many cases that other labs miss because they look beyond the overly strict CDC testing protocol.

[mojogal]

I have not heard of minimal change disease being connected to Lyme. I have hear it connected autoimmune diseases, which Lyme is not.

Good luck