Hello again,
I don't think the lab actually tried to type the virus. I think they just wanted to rule out bacterial infection or anything that would prove to be a treatable, immediate threat. Once those aforementioned results came in, and I was chock-full of acetominophen and painkillers, I was out the door!
One of my professors had a theory that the fever could have been caused by coccidyomyocosis, since we live in the low desert. Interesting theory...
My diarrhea has been fairly manageable from my perspective, still a few times a day. My weight continues to be stable at 115-117 pounds. I have still been feeling febrile on occasion (only was able to take my temp on one of those occasions and it was around 100 degrees F) and some malaise, and still spilling protein in the urine, but no other major issues.
I see the nephrologist on Monday and will get the results of my 24-hour urine. Hopefully the proteinuria will prove to be minimal. Thank you for checking in, and I'll update you! : )
Hello,
Any word on the type of virus? PCR? Viral culture?
How are you feeling?
Have you met with the nephrologist yet?
~•~ Dr. Parks
This answer is not intended as and does not substitute for medical advice. The information presented in this posting is for patients’ education only. As always, I encourage you to see your personal physician for further evaluation of your individual case.
Hi Doc,
The CSF was clear, colorless, no WBCs, no RBCs, protein 28 (no units - but not marked "high" or "low") and glucose 73 (marked "high").
My CBC and chemistries revealed a slightly elevated glucose (110), low WBC (3.1), high bands, low BUN, and slightly low potassium and calcium. My ALT and AST were slightly elevated.
I was discharged after the tap results came back with "some kind of virus." Which I'm sure is possible, although that crazy fever threw me for a loop.
Hello,
I hope that you are feeling better after the febrile illness, the complication following the LP and the Fleets experience--quite an ordeal for you.
Can you tell me what other testing (and results) that came from your LP? For example, protein, glucose, pressure, viral panels, etc.?
At your discharge from the hospital, what was the working diagnosis?
~•~ Dr. Parks
This answer is not intended as and does not substitute for medical advice. The information presented in this posting is for patients’ education only. As always, I encourage you to see your personal physician for further evaluation of your individual case.
Just a brief update - I came down with a 105-degree fever a couple weeks ago that persisted for a few days, combined with a headache, so was sent for a lumbar puncture (no meningitis). The LP resulted in a crushing spinal headache and severe vomiting every time I was not lying completely flat, so I was in the hospital several times getting IV caffeine and Dilaudid, Zofran, morphine, percocet, you name it...I eventually had two blood patches. Am well on my way to recovery now but that was a miserable experience.
What I noticed is that after getting all those painkillers, I actually found myself impacted for the first time in my life, which necessitated treatment with a Fleet enema (also a first). Now that all of that is out of my system, I am again having several bouts of diarrhea each day. I was hopeful there for a minute.
I am doing my 24-hour urine collection now and have an appointment with the nephrologist in two weeks. I am hesitant to take the Lotronex after seeing what the painkillers did!
The multiple posting is a bug in the site. The Medhelp elves assure Swampy that it will be fixed soon, but it happens all over the site.
Dear Sarikate:
The next steps make sense. As you have likely read regarding Lotronex, be cautious and attentive -- significant side effects in some people.
I agree -- you should consider a conversation with your Endocrinologist to get their perspective on PTU and your renal insufficiency.
~•~ Dr. Parks
This answer is not intended as and does not substitute for medical advice. The information presented in this posting is for patients’ education only. As always, I encourage you to see your personal physician for further evaluation of your individual case.
Not sure why that posted four times, sorry!
Hi again,
I saw the nephrologist today and he wants to do the 24-hour urine test before proceeding with a biopsy. ANA, C3, C4 were all normal. My GFR did decrease to <90 which supposedly categorizes me as stage 2 CKD but I know that doesn't necessarily anything on its own. I will see him for a follow-up in mid-April and he will then decide whether the biopsy is necessary. I guess it's just watchful waiting for a while.
If the proteinuria is not heavy enough to warrant biopsy, I might ask my endo about discontinuing the PTU to see if this kidney issue is drug-induced (especially since I've read that 30% of anti-thyroid-drug-treated Grave's patients have spontaneous remission upon discontinuation of the drugs).
In the meantime, with my diarrhea, I might try Lotronex. Could be worth a shot since nothing else seems to have worked wonders!
Hi again,
I saw the nephrologist today and he wants to do the 24-hour urine test before proceeding with a biopsy. ANA, C3, C4 were all normal. My GFR did decrease to <90 which supposedly categorizes me as stage 2 CKD but I know that doesn't necessarily anything on its own. I will see him for a follow-up in mid-April and he will then decide whether the biopsy is necessary. I guess it's just watchful waiting for a while.
If the proteinuria is not heavy enough to warrant biopsy, I might ask my endo about discontinuing the PTU to see if this kidney issue is drug-induced (especially since I've read that 30% of anti-thyroid-drug-treated Grave's patients have spontaneous remission upon discontinuation of the drugs).
In the meantime, with my diarrhea, I might try Lotronex. Could be worth a shot since nothing else seems to have worked wonders!
Hi again,
I saw the nephrologist today and he wants to do the 24-hour urine test before proceeding with a biopsy. ANA, C3, C4 were all normal. My GFR did decrease to <90 which supposedly categorizes me as stage 2 CKD but I know that doesn't necessarily anything on its own. I will see him for a follow-up in mid-April and he will then decide whether the biopsy is necessary. I guess it's just watchful waiting for a while.
If the proteinuria is not heavy enough to warrant biopsy, I might ask my endo about discontinuing the PTU to see if this kidney issue is drug-induced (especially since I've read that 30% of anti-thyroid-drug-treated Grave's patients have spontaneous remission upon discontinuation of the drugs).
In the meantime, with my diarrhea, I might try Lotronex. Could be worth a shot since nothing else seems to have worked wonders!
Hi again,
I saw the nephrologist today and he wants to do the 24-hour urine test before proceeding with a biopsy. ANA, C3, C4 were all normal. My GFR did decrease to <90 which supposedly categorizes me as stage 2 CKD but I know that doesn't necessarily anything on its own. I will see him for a follow-up in mid-April and he will then decide whether the biopsy is necessary. I guess it's just watchful waiting for a while.
If the proteinuria is not heavy enough to warrant biopsy, I might ask my endo about discontinuing the PTU to see if this kidney issue is drug-induced (especially since I've read that 30% of anti-thyroid-drug-treated Grave's patients have spontaneous remission upon discontinuation of the drugs).
In the meantime, with my diarrhea, I might try Lotronex. Could be worth a shot since nothing else seems to have worked wonders!
Thank you so much, I admire your thoughtfulness and the quick turn-around time with your answers; it is obvious that you are invested in others, even your cyber-patients!
No other questions for now; I'll see what the nephrologist says on Thursday and will keep you updated. Thanks again.
My advice is for you to explain exactly what is going on with regard to the "night sweats" and the dermatologic eruptions or "rashes."
With regard to periodicity of the night sweats, it really depends the cause--for example, we classically think of the night sweats associated with TB and the night sweats may not be every single night.
As for the differential diagnosis for "easy bruising"--that's a long list. What you are describing could represent vascular fragility in terms of capillaries that are easily damaged with very mild trauma. Nutritional deficiencies of vitamins that are associated with endovascular health are a possibility: Vitamin C, Vitamin E. The vasculitides are also on the differential list. Another idea that comes to mind based on your possible history of nephrotic syndrome--if you are spilling protein in your urine, it is possible that this could explain the "bruising" problems.
Usual test for Vitamin K deficiency is the PTT (Prothrombin Time) test. Although, there are specific serum tests for Vitamin K. (http://www.aruplab.com/guides/ug/tests/0099225.jsp).
Any other questions to discuss before your appointment(s)?
~•~ Dr. Parks
This answer is not intended as and does not substitute for medical advice. The information presented in this posting is for patients’ education only. As always, I encourage you to see your personal physician for further evaluation of your individual case.
Thanks for your support. A couple questions before I see the docs this week: I hate to bring up every little symptom because it just makes me feel like an alien, but it is hard to figure out where these things are coming from. For instance, the rashes I had this week, which have since resolved. Secondly, the fact that I have been having night sweats a couple nights a week. If these were "true" night sweats or at least clinically relevant, wouldn't they happen every night?
One more thing, do you know how to test for vitamin K deficiency? I have serious bruising issues; I will bruise in odd places like my chest and back. I had a PTT and PT and bleeding time done and all were normal, so could this be another manifestation of malnourishment?
I appreciate your help!
Dear Sarikate:
Thanks for providing the additional details.
Please keep me informed as more testing comes in from your treating physicians and as things change or improve with your symptoms.
Are there any specific questions that I can try to answer for you at this time?
~•~ Dr. Parks
This answer is not intended as and does not substitute for medical advice. The information presented in this posting is for patients’ education only. As always, I encourage you to see your personal physician for further evaluation of your individual case.
Hi Doc,
As far as nutritional strategies go, I am essentially just trying to pack as much nutritional punch as I can. I eat things like oatmeal. lactose-free milk. peanut butter, basmati rice, steamed veggies, berries, bananas, salmon, whole grains. I don't notice that any foods make the symptoms better or worse. I will have the diarrhea even during periods of fasting or low intake, although stimulating the gastrocolic reflex is well-known to "set me off."
Have not had a 24-hour urine; I've been hearing that a random P:C ratio is just as good and have gotten mixed messages about whether I actually need to have this test done. I will ask about it next week.
I don't have my results on me right now, but if I recall correctly my albumin was borderline low, but I think still WNL. No anemia, and ferritin levels are good. The only thing I can think of is that my mean platelet volume (MPV) was slightly low.
I had fecal leukocytosis and and occult blood on several occasions but most recently, in the past couple of months, this test has been normal (always a bonus). The most CBCs have shown that my white count has not been recently elevated, and there's been no eosinophilia throughout the years (I remember looking closely at that because of the relationship of eosinophilia to things like Strongyloides stercoralis, which I came into contact with in Africa). I think my neutrophils have been a little whacky on occasion, but nothing has been consistent or evidently troubling to my physicians on the CBC.
Nocturnal symptoms were watery diarrhea and abdominal pain. Again, comes and goes.
I've wondered about asking for a BOLUS of IV Flagyl/Cipro, I am that desperate. I have been taking VSL#3, a fancy new probiotic (FDA approved for treatment of UC/IBS, although I'm sure you know that already)! It was after starting this that I noticed my weight stabilized. Not sure if those two events are related, but it's worth a shot.
Sarikate,
I am happy to hear that you have been able to keep your weight steady over the last several weeks. What is your strategy at this point? What types of foods result in the fewest amount of symptoms?
Have you had a 24-hour urine test? (like you mentioned above, difficult to interpret a spot/random creatinine)
You mentioned your total protein...what was the value for albumin on your CMP?
Are you anemic? If so, what type of anemia (mixed, microcytic, macrocytic)?
What is the differential pattern with your "leukocytosis" when your white count is elevated (eosinophils, neutrophils, etc)?
What "nocturnal symptoms" are you experiencing?
The reason why I asked about the specific dosage and regimen for your treatments with Flagyl (in my previous postin) is because it is well-known that in certain parts of Africa and India, there is partial resistance of giardia to flagyl. So, giardiasis can become chronic if definitive high-dose Flagyl is not initiated. And, based on your history that you describe, you did improve with IV therapy of Cipro and Flagyl...curious!?
Even so, as you mention, this probably would not explain the protracted course of your illness and the significant morbidity that you describe.
You're welcome for the dialogue. Keep the conversation going if you like.
~•~ Dr. Parks
This answer is not intended as and does not substitute for medical advice. The information presented in this posting is for patients’ education only. As always, I encourage you to see your personal physician for further evaluation of your individual case.
Thank you, Dr. Parks! To answer your questions:
1) My current working diagnosis...that's a good question. I don't think my current GI has an "official" diagnosis at this point. All of my paperwork says "chronic diarrhea." I've had lots of conflicting opinions on the diagnosis because most of the doctors believe IBS cannot present with such profound morbidity (including weight loss, nocturnal symptoms, leukocytosis and melena, etc.) but then again, the symptomatology does not fit "nicely" within any other disease parameters either.
2) My nephrologist has not ventured a guess about the proteinuria, although he ran through a laundry list of potential causes, including glomerulonephritis, etc. He mentioned the possibility of doing a renal biopsy; I will be seeing him next week and will know more then.
FYI, I had a random urinary creatinine done in the hospital (208 mg/dL) but there is no reference range listed on the lab report so I am clueless as to how to interpret. Also, I noticed on my CMP that my serum protein level was low (5.7 g/dL with a reference range of 6.0-8.2).
3) Celiac disease has been ruled out by multiple biopsies and I also had the Prometheus celiac and IBD blood panels done; both were negative.
4) I was treated twice with oral Flagyl and Cipro in Africa. This was because my symptoms kept returning while I was there. Once I got back to the U.S., I received IV treatments of both and felt better for a while. However, I was intermittently symptomatic for the next 2-3 years (i.e. I would have some days where I would be in the bathroom 15-20 times a day with watery diarrhea; these days occurred 4-5 times a month.)
Another important tidbit is that I traveled to Ecuador, Peru, and Bolivia in early 2003. When I was in rural Bolivia, the diarrhea became more acute, usually between 15-30 times a day, and this continued every day for four weeks. I had no pain or fevers at that time, however. A local doctor there treated me again with Flagyl/Cipro, again I noticed improvement, and upon returning home the cycle started again. Intermittently severe symptoms, followed by brief remissions, etc.
In 2005 I started losing weight very rapidly and that was what prompted me to see a GI and start the whole work-up. Since I started medical school in September, I've lost a good 20 pounds more. However, I have maintained my weight between 115-118 pounds for the past couple of weeks and that is heartening!
Thanks so much for your help, I know this is a lot of information to keep straight!
Hello. As you described in your posting, you have experienced quite a protracted illness. I'd be happy to have a dialogue with you regarding your illness / symptoms.
As you have discovered through your research, there are well-documented descriptions of IBS and IBS-like symptoms that follow infectious diarrhea (viral, bacterial, or parasitic).
What is your current "working" diagnosis? Is it IBS?
Does your nephrologist think that you have nephrotic syndrome?
Has gluten-sensitive enteropathy (Celiac Disease) been ruled out?
How much time passed after your symptoms began in 2000 until when you were treated with flagyl and ciprofloxacin? What dosage and treatment regimen did you complete (how much flagyl for how long)? Did you undergo multiple rounds of flagyl?
You stated in your posting that for the last three years you have had profuse watery diarrhea. Does that mean that from ~ 2000-2005 that you did not have significant symptoms?
I hope this is helpful and I look forward to seeing your response to the questions.
~•~ Dr. Parks
This answer is not intended as and does not substitute for medical advice. The information presented in this posting is for patients’ education only. As always, I encourage you to see your personal physician for further evaluation of your individual case.