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Gennel 07-23-2012 09:34 AM

Please help!! Husband horribly sick for 3+ months and no diagnoses!!!
I just joined in the hopes that someone could offer advice. My husband has been sick for 3 months and he's only getting worse. Let me explain his symptoms and what his labwork shows.

He had Coxsackie virus. Had high fevers around 103.0 for about a month,fatigue
Swollen& painful neck lymphnodes. His white blood count was low at 2.9
His WBC was rechecked today and they are still low 3 months later. Doctor says its no longer Coxsackie and some things found in bloodtest suggest an immune disease. We thought lupus since he is at risk for it but doctor said nope ,lupus won't give you fevers for 3 months.
Symptoms he has:

Fevers everyday or every other day 100-102.4


All over joint pain


Night sweats

Sometimes nausea

Weightloss 20+ lbs

He was sent to an oncologist and today that doctor discovered a very swollen and painful lymph node in left collar bone. He was about to order a biopsy but is going to wait for a gallium scan result. This would show any abnormality in lymph nodes. The only thing they had t
Him on was 10 mg Prednisone which he was taken off like 2 wks ago.
They are doing another catscan since this doctor feels that prednisone may have
Caused swelling to temporarily go down and not show up in catscans
we have tons of prayers for him and have faith that god will guide us with what is wrong . I'm sorry if I'm babbling but I've done plenty research online and the collarbone lymph node worries me the most.

Any ideas,advice???

They did an ANA TEST WHICH was positive, cd3 cd4 which showed a possible immune disease, I'm honestly afraid and he is terrified
( he is having new symptoms for about a week now, his vision has become blurry. He would use magnified glasses 1.75% magnification to read but now in the past 4 days or so he says has to use them 24/7. We FaceTime our daughter on our iPad and he was seeing her face blurry so he had to put his glasses on!
Plus today he had to return to work after missing a month but his health is getting MUCH worse, his feet are swollen and his shoes were really tight. I pressed on his feet but it does not leave indentation. It's like tough

Also another thing is I THINK he may have Raynaud? His fingers become pale and super cold, his toes become very pale as well and he had some toes spasm really bad a few days ago.

He had a Galium scan done and results are in, hopefully we get some kind of diagnoses because he is getting worse daily. He went from 210-215 now weighing 185 lbs in 3 months.
He always feels clammy all over and is always sweaty

Gennel 08-16-2012 08:15 AM

Re: Please help!! Husband horribly sick for 3+ months and no diagnoses!!!
Well he was referred to this hospital for 2nd evaluation and opinion.
The biopsy was sent to a lab with cancer specialists I think it's called Moffat? 
Well he was seen by an oncologist and nurse practitioner there.
Thank God I brought all the labwork that was done 2 months ago. The nurse practitioner was
EXTREMELY thorough and immediately pointed out some important things that the the infectious disease doctor failed to clearly see or explain!! June 11 labwork showed that he was POSITIVE for Epsteinbarr virus and several strains of coxsackieb viruses.
The infectious disease doctor here only told us that he had been "exposed at some point with Mono". But the test showed his level was 8.0 and it should
have been 0.0 - 0.8!! So this virus was fully active along with Coxsackie !
She personally suffered from Mono a few yrs ago and was hospitalized for 4 wks and it took her 6 months to recover! So she can only imagine the havoc these 2 viruses were causing his immune system.

They went ahead and checked for any possible swollen lymph nodes and he had none,
Also his fevers stopped about a month ago. A few of these facts leads this oncologist to think that it's highly unlikely that it's lymphoma but wants the final pathology report to confirm it. She said that if it was lymphoma he would still get fevers and he wouldn't be improving how he is.
The obvious reason for him very slowly improving is because his t-cells were 316 and 333 at one point due to a chronic virus. She said herself that some viruses are prolonged beyond what most doctors think. I was glad to hear this and glad to know that I wasn't crazy when I read his Epsteinbarr results as being very high and my husband thinking I read the results wrong!!
They took into serious consideration that January of this yr he had a tooth infection with a small abscess that 2 weeks of antibiotics did NOT clear, his lymph nodes became swollen then and by May25 th or so the tooth was taken out, he caught the virus/es within that week and things went downhill fast causing another lymph node to swell to 2.4 cm.

She will call me with the results instead of making us drive 2 hrs.

 I just want the pathology to come back already so we can put our focus on just rebuilding 
His immune system.
He continues to feel much better and on week2 of feeling a whole lot better with the exception of his right ankle still swollen and pain ranges from 5 during the day and like 8-9 at night

ladybud 08-16-2012 08:36 AM

Re: Please help!! Husband horribly sick for 3+ months and no diagnoses!!!
Thank goodness he is starting to feel better! A month without fevers is good progress. The lab tests for EBV are somewhat complex, and one must be very familiar with them to determine current vs past infection. If it turns out to be lupus, EBV is thought to trigger lupus in some people, and the Prednisone may have knocked it into remission. I am glad they finally got a biopsy, so you will answers soon. You have been thru a bad 3 months, and are due for a break!

Gennel 08-23-2012 03:01 PM

Re: Please help!! Husband horribly sick for 3+ months and no diagnoses!!!
Well his pathology report is back!

It took nearly 3 weeks! It was sent to Moffet lab a known cancer specialists/ pathologists. They found it was NOT lymphoma it is Kikuchi- Fujimoto disease and at a glance it looks like lymphoma. Many people are misdiagnosed with lymphoma when in fact it's this. It's rare and it's benign and usually runs its course in 6-7 months. It's main symptom is several swollen lymph nodes that are painful, the rarer symptoms are fever,nausea vomiting which he did have.
Research shows this develops after EVB which he did have.

I thank God, we thank God!! Now he's just rebuilding his immune system.

It's been 4 months , lots of trips to the ER , several hospitalizations. He caught several viruses because his immune system was so weak. Epstein Barr virus, CoxsackieB .
One crazy thing is that he tested positive for Dengue Fever, something that comes from the Caribbean. The infectious disease doctor refused to admit it was even possible to get that in Florida. I t old him the university hospital had a woman diagnosed there plus there have been confirmed cases in key west Florida! He said no no he probably traveled out of us. Lol my husband hasn't left the state in a gazillian years lol. But I didnt argue I just told him to keep this in mind when a patient comes in and is difficult to diagnose with these symptoms.

ladybud 08-24-2012 01:10 AM

Re: Please help!! Husband horribly sick for 3+ months and no diagnoses!!!
So glad for you both that this is benign and self limited. I have never even heard of this disease, but with a name like that, I'll remember it. Hope his recovery is faster than the predicted time.

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