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Terente
04-05-2009, 06:33 AM
Happy to find such a place! I,m 38 years old,not diagnosed yet,have an appointment tommorow with a reuhmy.Here is where i stand..had chickenpox last december followed by a throat infection.Days after that some goosebumps started to go on all over my body.Another month and some red skin on my back then on my hand and feet face and scalp.In March i got off with mild fever one night and one armpit gland bumped,hurting a little.blood test showed wbc 11.2000 doctors said body fighting an infection, ANA positive at 1:80.Lost weight,lost appetite..Fever gone within 2 days after antibiotics.Then i start to sweat even during the day my skin felt hot then sweating and cooled off.Right now sweating not that much,have episodes but in the morning feel dizzy and even during the day.Took 3 days off work as i felt weak from antibiotics,did not eat a lot and lost 12 pounds.Even before,my skin was red on and off but i felt like tick skin.I feel better now,bump under armpit start go off,no joints pain (yet?).Not sure about butterfly..but i did noticed some redness on my cheecks. Is this some kind a flare..are they symptoms..looks like my family doctor think so although she did not tell me nothing just sent me to a reuhmy..

Bless you all!

sick n tired
04-05-2009, 07:01 AM
Hey Terente,

Welcome, I am sorry that you have been feeling so poorly for so long, It sure does look like some sort of flare. It is good that you are getting in to see the Rheumatologist so soon, though.

Be sure to make a list of your symptoms since he will want a thorough accounting. No symptom is too trivial. (It has taken me a year to even realize that) It usually takes time even years to be diagnosed... for many it has been a long time and they are still waiting.

Please keep us posted....

mountaindreamer
04-05-2009, 10:17 AM
hi terente,

welcome with open arms to our home,

i am so glad that you are seeing a rheumy tomorrow. the dr. should be able to give you some knowledge about what is going on. he/she will probably take a lot of blood work, so may not make a diagnosis this soon.

like sickntired said, take a list of symptoms with you, also, these symptoms do not have to be present right now. symptoms often come and go and that is why they are called intermittent.

let us know how your appointment goes tomorrow. do you have someone going with you? this person could take notes so that you can refer back to them later....it is so hard to remember everything that the dr. says.

Terente
04-05-2009, 10:54 AM
hi terente,

welcome with open arms to our home,

i am so glad that you are seeing a rheumy tomorrow. the dr. should be able to give you some knowledge about what is going on. he/she will probably take a lot of blood work, so may not make a diagnosis this soon.

like sickntired said, take a list of symptoms with you, also, these symptoms do not have to be present right now. symptoms often come and go and that is why they are called intermittent.

let us know how your appointment goes tomorrow. do you have someone going with you? this person could take notes so that you can refer back to them later....it is so hard to remember everything that the dr. says.

I had 3 blood tests done,still waiting the results on the last one.first time meeting a specialist though.I will post the meeting tommorow and how it goes for everybody.Happy to find so many nice people in here!
On the funny side of the my story,first time when my armpits went inflamed and fever and no appetite..lots of bad things went thru my mind and Lupus seemed a funny one to have than the others with this symptoms.Now my armpits start to go of little by little,fever gone long time ago,i dont think the antibiotics that i was prescribed were of any help...but docs at urgent care did not now what is it..an infection they thought since my wbc then was 18000,a little elevated as they said.Still feel tired,feel good after a nap,anybody encounter sweatness on and off? And i am a smoker...a habit i realize will have to go...i find that i,m uncommonlly dizzy after i have one.
Cut on them o lot and most likely i will quit.This lost of appetitte made me feel weak,i force myself to eat something and lost like 14 pounds in 2 weeks i will say.Anyway best of luck to you all and talking to people with same condition means the world .Its my first flare and i.m a little put down too..lets hope for shiny days!

mountaindreamer
04-05-2009, 12:26 PM
hi terente,

i too am a smoker, have cut way back in an effort to eventually quit. I too have noticed that i get dizzy after a smoke....hmmmm

hope you are having a great day.

Terente
04-05-2009, 03:22 PM
Thank you for support,i guess i,m unstable emotionally since its my first encounter with this disease.I will post tommorow after i see the doctor,I guess every piece of information shared helpS!

Thank you all!

mountaindreamer
04-05-2009, 04:04 PM
hi again,

i failed to answer your question about sweating. yes, many people suffer from going from cold to sweating.....i especially sweat at night, then i get cold...is a vicious cycle.

good luck tomorrow, let us know what the dr. says.

take your list of symptoms, and be strong....you have friends here.

Terente
04-06-2009, 01:34 PM
Hi all again,

Went to a specialist looked at my 2 bloodwork and he said as far as he thinks is a mononucleosis EBV virus infection,with all the symptoms that i have had.
I got another round of bloodwork wordered next week,I do feel better today,no anemia .Still not a lot of appetite , guess i`ll post when i have new results.I just half calmed ,I wanna see how it goes from now on i guess.
Bless you all and i will post further!

mountaindreamer
04-06-2009, 07:31 PM
hi terente,

glad you got some answers today....now you can learn as much as you can, and contribute to improved health. please let us know how things progress.

get some rest, i hope each day finds you feeling better.

ssingh
04-07-2009, 10:00 AM
If it is EBV virus infection, It will take long time to get back to normal. Even I have lupus. In my case my lupus was under control. then I had Shingles infection (same family as chickenpox). All of sudden I had similar symptoms as your loss of appetite and loss of weight. then I was tested postie for EBV. my all lupus markers were coming normal but i was keep feeling bad. After 1 year I start to feel bit better now.

Terente
04-07-2009, 11:23 AM
If it is EBV virus infection, It will take long time to get back to normal. Even I have lupus. In my case my lupus was under control. then I had Shingles infection (same family as chickenpox). All of sudden I had similar symptoms as your loss of appetite and loss of weight. then I was tested postie for EBV. my all lupus markers were coming normal but i was keep feeling bad. After 1 year I start to feel bit better now.

Thank you for reply!Being so freaked out i went and i took and hiv test today,came back negative,good so far.My simptoms now are sweating on and off ,dizziness and anemia cleared out , still lymph nodes under my armpit and lack of appetite(being so worried?).does it take more than 2 week for nodes to clear out after EBV?

ssingh
04-07-2009, 11:50 AM
I still have small lymph node under armpit but they do not hurt. In my case it could be "lupus Reactive Nodes". Lupus people get them. But they were only discovered after the EBV thing. If you google EBV and lupus tou will find lots of stuff

Terente
04-07-2009, 05:15 PM
I still have small lymph node under armpit but they do not hurt. In my case it could be "lupus Reactive Nodes". Lupus people get them. But they were only discovered after the EBV thing. If you google EBV and lupus tou will find lots of stuff


I,m reading now,but why do i sweat...on and off and i start to have some funny feeling in my fingers and palms tingling&itchy.No appetite whatsoever..

Terente
04-07-2009, 05:40 PM
I,m reading now,but why do i sweat...on and off and i start to have some funny feeling in my fingers and palms tingling&itchy.No appetite whatsoever..

Gues its related with Raynaud disease ,so many faces of this disease uh

ssingh
04-07-2009, 07:26 PM
I use to sweat and feel cold stuff like this

froggal
04-08-2009, 12:13 AM
terente
Good luck to you I hope you find answers soon. That is the hardest part. . . waiting for them to tell you what is wrong. It will work out and hopefully soon they will know exactly what is going on!

Terente
04-08-2009, 06:03 PM
terente
Good luck to you I hope you find answers soon. That is the hardest part. . . waiting for them to tell you what is wrong. It will work out and hopefully soon they will know exactly what is going on!

I discovered for the first time today,rash on my face the butterfly kind of.I,m going to tell this to the doctor..I dont have any joint pains,but i`ve has skin rush sunburn like for 2 months up until this happened.Is this that type of skin lupus?discoidal or whats the name?

Terente
04-08-2009, 06:06 PM
and what i realized is when my skin start to have that sunburn sensation is when i start to sweat and cool off.

Terente
04-08-2009, 06:31 PM
Sorry for so many posts but another question i cant find the answes...are flares on lupus discoidis the same as |SLE? Shouldnt they be just skin related?

mountaindreamer
04-08-2009, 07:16 PM
hi terente,

there are a couple of members who suffer terribly with skin issues from lupus. I don't, so i am no expert....hang on, someone will be here soon who can answer your question.

Terente
04-09-2009, 05:07 PM
I keep posting as i promised. I went to work yestarday and today, i work as an assembler for Toyota,so go go go job.Felt tired when i came back but after a 2 hour nap i,m good.I kind of feel exactly like i felt before all this episode happened,no more nodes under armpit,i do sweat still on and off and my skin got back to sunburning feeling mild stuff.So i might have been like that for a while but i didnt realized,my first doctor said i have dermographism.
the rash in the face appeared mild when i came home today and i think i had it before but i blamed it on my protective glasses that i have at work and the fans blowing in my face.Last night appetite came back from nowhere and i ate good but as soon as i went to bed dissapeared again,start to worry again.One question,is fruit yogurt ok to eat? Seems the only food that i can eat now and drink orange juice? Anybody any ideea?

Terente
04-10-2009, 11:51 AM
Frustrated,still sweating at night,i gues under my ribcage start to feel something after 2 days of work and no rest,some brainfog today on and off easter, weekend and my family doctor not there,dont know where to begin and where will it end.

Terente
04-11-2009, 10:21 AM
Small question again,my nodes under armp were gone for 2 days and they seem to come back and go in mild form.Is this how they behae?

Saysusie
04-12-2009, 03:19 AM
I've read all of your posts and will try, as best as I can, to answer your questions:

You mention that your doctor diagnosed you with EBV infection. EBV, is a member of the herpesvirus family and one of the most common human viruses. When infection with EBV occurs during adolescence or young adulthood, it causes infectious mononucleosis 35% to 50% of the time. Symptoms of EBV & infectious mononucleosis are fever, sweating, sore throat, and swollen lymph glands. Sometimes, a swollen spleen or liver involvement may develop. Heart problems or involvement of the central nervous system occurs only rarely, and infectious mononucleosis is almost never fatal. Although the symptoms of infectious mononucleosis usually resolve in 1 or 2 months, EBV remains dormant or latent in a few cells in the throat and blood for the rest of the person's life. EBV also establishes a lifelong dormant infection in some cells of the body's immune system. Symptoms can last only a few days or as long as several months. In most cases, they disappear in 2 - 6 weeks.

After primary infection, EBV maintains a steady low grade latent infection in the body. Continuous infection can cause continuous sweating. This latent infection is normally kept in check by the cellular defenses which, if impaired by immmunocomprised disease (such as Lupus), may lead to the reactivation of the virus to cause clinical disease. In a few cases, lymphoproliferative lesions and lymphoma may develop. These lesions tend to be extranodal and in unusual sites such as the GI tract or the CNS.

I hope that this has been helpful to you. What treatment has your doctor discussed with you for EBV?

Peace and Blessings
Namaste
Saysusie

Terente
04-12-2009, 11:33 AM
I've read all of your posts and will try, as best as I can, to answer your questions:

You mention that your doctor diagnosed you with EBV infection. EBV, is a member of the herpesvirus family and one of the most common human viruses. When infection with EBV occurs during adolescence or young adulthood, it causes infectious mononucleosis 35% to 50% of the time. Symptoms of EBV & infectious mononucleosis are fever, sweating, sore throat, and swollen lymph glands. Sometimes, a swollen spleen or liver involvement may develop. Heart problems or involvement of the central nervous system occurs only rarely, and infectious mononucleosis is almost never fatal. Although the symptoms of infectious mononucleosis usually resolve in 1 or 2 months, EBV remains dormant or latent in a few cells in the throat and blood for the rest of the person's life. EBV also establishes a lifelong dormant infection in some cells of the body's immune system. Symptoms can last only a few days or as long as several months. In most cases, they disappear in 2 - 6 weeks.

After primary infection, EBV maintains a steady low grade latent infection in the body. Continuous infection can cause continuous sweating. This latent infection is normally kept in check by the cellular defenses which, if impaired by immmunocomprised disease (such as Lupus), may lead to the reactivation of the virus to cause clinical disease. In a few cases, lymphoproliferative lesions and lymphoma may develop. These lesions tend to be extranodal and in unusual sites such as the GI tract or the CNS.

I hope that this has been helpful to you. What treatment has your doctor discussed with you for EBV?

Peace and Blessings
Namaste
Saysusie

Treatment was to....rest.Now as of today Sunday my nodes under armpit,they are the only ones inflamed but not something you can see on the skin its inside and not firm and they come and go as they want,feel smaller.Still some sweating once in a while and at night somehow .Appetitte seemed to be back little by little and today i felt smething around my nose like the rash i had 2 days ago..but just feelings so far no red rash.
As fo my mono the infectionist said...the result was rest..and can linger for months...but i dont think that mono is what i went thru so monday i`ll be back to my family doctor and ask for full and specific bloodwork .
I will like to thank you a lot for your response as being new of this i,m kind of in panick mode.

Terente
04-13-2009, 03:07 PM
Treatment was to....rest.Now as of today Sunday my nodes under armpit,they are the only ones inflamed but not something you can see on the skin its inside and not firm and they come and go as they want,feel smaller.Still some sweating once in a while and at night somehow .Appetitte seemed to be back little by little and today i felt smething around my nose like the rash i had 2 days ago..but just feelings so far no red rash.
As fo my mono the infectionist said...the result was rest..and can linger for months...but i dont think that mono is what i went thru so monday i`ll be back to my family doctor and ask for full and specific bloodwork .
I will like to thank you a lot for your response as being new of this i,m kind of in panick mode.

update: Went to my family doctor today again ,the 3rd round of bloodwork wich was done last week,came like that: red blood count normal,kidney,liver normal,all normal,wbc still 18000 like a weekago...result and i`ve been dissmissed my body is fighting mono and i should wait another month and do another round of bloodwork tommorow for EBV.
SO IM NOWHERE. UGH

SassyAuburn
04-13-2009, 04:20 PM
I'm not one to push pills, and don't know if they would prescribe it with a WBC so high, but might you ask about Prednisone? It certainly helps with the appetite, helps inflammation of the skin and although the side effects can be "ugh", if you get through that then your general overall feeling can be much better.

I'm no doctor but was wondering if that had been discussed.

Also, don't forget, if you don't feel like your dr's are testing enough or the right things, or you just aren't feeling better from their suggestions, don't hesitate to get another opinion. I used to feel I would "hurt the doctor's feelings" and he'd be mad at me, but then I realized my body was more important than his ego!!

Good luck, keep us posted.

Saysusie
04-14-2009, 02:14 PM
Ditto to everything that SassyAuburn said!!!


Peace and Blessings
Namaste
Saysusie

Terente
04-14-2009, 06:03 PM
I think she mentioned that she would give me some steroids to feel better but she said that would only mask the symptoms.That was 2 weeks ago before i went to specialist.I inquired about the wbc count and when all this started wbc was 11200 and after a week 18000 and stayed there.Doctors said its normal when body fights infection and its not really really alarming if red cells liver and kidney,urin and pallets are all ok.Ab out armpits nodes they go small and then i can feel them again and so on.Only under armpits...she said they react to infection.So whatever i had to say everything was explained thru mono.I took another bloodwork today for mono soecific,takes about 2 weeks for results to be back..but in the mean time? ugh.
Seeing another doctor how? I,m in Canada..you have a familly doctor here or hospital,specialist by appoinment only.how can i get another opinion?

Saysusie
04-15-2009, 09:59 AM
Can you ask your family doctor to refer you to a specialist? In that way you might be able to get a second or even better opinion? I'm not sure how things work in Canada, but it seems that there should be some way for you to get another opinion. :unsure:

Peace and Blessings
Namaste
Saysusie

Terente
04-16-2009, 06:05 PM
Fifth rounds of bloodwork today,nothing major showing up on previous 4 other then a ,,virus,, Immaging came in for lungs bones and chest,all good.
Just a short update,will post further.Thank you all for support,really makes a difference when somebody talks to you!

Angel Oliver
04-17-2009, 02:23 AM
Sending you gentle hugs.xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

mountaindreamer
04-17-2009, 06:32 AM
hi terente,

this is another frustration that we face with our illness. We suffer pain, unfamiliar symptoms, worry about what it might be, go to the dr. and then to get tests done.....only to be told "it must be your lupus".

so sorry that you did not get any answers from all of the tests, but at least you know that your organs are in tack and working.

hope you can rest today,

Terente
04-17-2009, 04:40 PM
Just got 4 weeks off work,as i,m not able to be up for it anymore.My temperature body kind of low in the morning.I gues i,m waiting for my 4th and 5th round of bloodwork results and any other symptoms that may arrive.

froggal
04-17-2009, 05:44 PM
My thoughts are with you!! Like I said before, it seems to me that waiting is the hardest part of this awful process! Dont lose faith! Sometimes it takes awhile to get solid answers but eventually they will figure it out!! We are always here to talk, listen, and be supportive.

mountaindreamer
04-18-2009, 12:04 PM
terente,

when making your symptoms list, be sure to think back and list any that you might have previously had. Not all symptoms come and stay, most go away and then we forget about them.

reading through some of the posts in the lupus symptoms section might help you remember some symptoms of the past....it sure worked for me.

lucky7
04-18-2009, 12:08 PM
Me too Phyllis! You're right, some do fade and i would forget about them if i hadnt charted them. :nah:

Terente
04-18-2009, 07:56 PM
i,m sweating on and off with flashes,red rush apear on my skin and i can feel on my back also,i can feel my lymph nodes..i dont know where i am.

mountaindreamer
04-19-2009, 10:57 AM
hi terente,

do you find that most of your sweating then cold happens at night...Most of us suffer from this, but appears to happen more during the night.

the red rash is irritating. I will deal with these if i have gotten too hot, especially if shower was too hot. The dr. can prescribe some cream for you, but i don't know of any way to get rid of the rash. We have some members who really struggle with skin rash, and i am sure they will be along to help with this.

hope you have found out where you are....feeling lost is so frightening.

Terente
04-26-2009, 10:05 AM
Back to posting.Doctor called to let me know that enzymes on my liver are back to normal,previous blood work showed a litlle elevated.Over the last week symptoms as followed: Body temperature back to normal,spleen hurt for 3 days now it doesnt,short of breath,feel like something goes up my neck and my ear hurt a litlle.Monday i,m back to doctor.

Terente
04-27-2009, 05:34 PM
Where to start. WBC count droped to normal 8500.ANA from a month ago 1:80 titer nucleolar pattern,wich i dont kow what it means.Tested positive to EBV in a specific blood test serology.A month and a half now,still sweating on and off and in the morning it takes me some time to bring my temp body up to normal.Tests for creatinine and all other were done and came back ok.
Still feel on and off some skin stuff,nothing like before .So where am i,what tests should i request??

KathyW1958
04-28-2009, 03:55 AM
Hi Terente,
Welcome to the site. This is a wonderful site. I hope that you get to feeling better and that you do not have Lupus. We are all here for you and hope that you keep posting. There are a lot of wonderful folks that come in here with great advice. I just want to welcome you to the site.

Hugs
Kathy

Saysusie
04-28-2009, 11:10 AM
Terente;
I wish that I had concrete answers for you:grumpy:

Antinuclear antibodies are a unique group of autoantibodies that have the ability to attack structures in the nucleus of cells. The nucleus of a cell contains genetic material referred to as DNA (deoxyribonucleic acid). The ANA (antinuclear antibody) test is performed on a patient's blood sample as part of the diagnostic process to detect certain autoimmune diseases, such as Lupus. Serum from your blood specimen is added to microscope slides which have commerically prepared cells on the slide surface. If your serum contains antinuclear antibodies (ANA), they will bind to the cells (specifically the nuclei of the cells) on the slide. Then, a second antibody that is commercially tagged with a fluorescent dye, is added to the mix of your serum and the commercially prepared cells on the slide. The second (fluorescent) antibody attaches to the serum antibodies and cells which have bound together. When viewed under an ultraviolet microscope, antinuclear antibodies appear as fluorescent cells.
If fluorescent cells are observed, the ANA (antinuclear antibody) test is considered positive.
If fluorescent cells are not observed, the ANA (antinuclear antibody) test is considered negative.
A titer is determined by repeating the positive test with serial dilutions until the test yields a negative result. The last dilution which yields a positive result (flourescence) is the titer which gets reported. For example, your titer of 1:80 is considered positive.
There are An ANA report has three parts:
1) positive or negative
2) if positive, a titer is determined and reported
the pattern of flourescence is reported An ANA report has three parts:
positive or negative
3) if positive, a titer is determined and reported.

ANA titers and patterns can vary between laboratory testing sites because they all may use different methods to report. However, these are the commonly recognized patterns:
* Homogeneous - the total nuclear fluorescence due to antibody directed against nucleoprotein. This is the common finding in Lupus.
* Peripheral - fluorescence occurs at the edges of the nucleus in a shaggy appearance. Anti-DNA antibodies cause this pattern. This is also common in Lupus.
* Speckled - results from antibody directed against different nuclear antigens.
* Nucleolar - (Your Result) results from antibody directed against a specific RNA (Ribonucleic acid ) configuration of the nucleolus or antibody specific for proteins necessary for maturation of nucleolar RNA. This is seen often in patients with systemic sclerosis. It is not uncommon for Lupus and Sclerosis to be overlapping diseases, occuring simultaneously.
Statistically speaking the incidence of positive ANA (in percent) per conditon is:
Systemic lupus erythematosus (lupus or SLE) - over 95%
Progressive systemic sclerosis (scleroderma) - 60-90%
Rheumatoid Arthritis - 25-30%
Sjogren's syndrome - 40-70%
Felty's syndrome - 100%
Juvenile arthritis - 15-30%

There are many Lupus patients who also test positive for EBV. There is a definite relationship between Epstein-Barr virus (EBV) infection and the development of Lupus. Also, it has been found that the development of Lupus can re-activate dormant EBV viruses.

I hope that this information has been helpful to you.

Peace and Blessings
Namaste
Saysusie

Terente
04-28-2009, 01:54 PM
Thank you Katie for your warm welcome!
Deeply apreciate Saysussie answers,well documented !
I want to explin in a few words why i am posting like that...
I,m 38 years old,never had even a slightly health issue in my life and from january when that chickenpox struck...hell came loose.All those symptoms are unfamiliar to me,i didnt even new where my spleen,stomach or liver is...but i guess life throws stuff at you and you have to fight it some time.
God almighty have a plan for everybody and we have to run in life according to what HE plans.
So dont think i,m crayzy,i,m just a pannicked guy for now:):laugh: