Is it a new disease or its CFS ?

[Survivor84]

I get positive test for HSV-2, but just a bit over the range, so I have to re-check. But I cant find information about herpes or papiloma causing our symptoms. I believe my infection was sexually and dont know how this crosses the condom, dont have other explanation, may be some unknown virus, hopefully inofensive, but probably the same that cause CFS/ME, Sjorgen, etc.

Urraco
How did you get this virus?

 

[patient.journey]

They have outbreaks in genital and nose and acyclovir clears it up. For year's

Ok if that is true and it could be there is a direct PCR test so why they didnt take it ?!

Beside they have an out breaks while I and others dont if it was the cause the blisters should be every were in genital or in the mouth ,,,

 

[patient.journey]

if this is in fact HSV, it makes a lot of sense that some of us very readily transmit it via saliva while some of us apparently only transmit it sexually. after extensive research, i've concluded both are transmitted via saliva, but hsv-2 is quite difficult to pass on orally and has less of a chance to cause oral ulcers (as little as 1% in some studies), while hsv-1 is just as readily passed orally and genitally, but has a tendency to only cause rashes/itching/discomfort where hsv-2 will more likely cause genital ulcers.

Omar, you said you were positive for EBV and CMV earlier? any other news on that?

And with Teedot's claim that a person has herpes but tests negative, that is now 3 confirmed cases of this i have witnessed (myself, and dmg on medhelp whom i contact via phone)

My EBV and CMV IgG results are high and they are going up but the question is why ?!

HSV 2 are high accurate while HSV 1 have a percentage that in every 10 cases one will not have a positive tests but they will have an out breaks that and they could test it by swab PCR !

 

[patient.journey]

Absolutely man. Really haven't bothered with the site too much since I first set it up but if it helps even one person find their way to these forums then it's definitely worth the money.

Would love someone to help so I'll try and set up / e-mail you some admin login details within the next 48 hours or so. (Would do it now but it's pretty late and have to be up tomorrow to take my girlfriend to the doctor - getting a whole heap of blood test results back that were taken last week. Will be straight back here with the results!)

As for my results: no, was / have never been tested for HSV 1 or 2. I know my ex of a few years back had a (genital) HSV-1 outbreak at one point but she was - and had been - on Valtrex for years before we met (and I never once had any visible outbreaks of any kind whatsoever). If/when I next get a blood test I'll be sure to check for it though. Not sure if it'll be on the results my girlfriend gets tomorrow (wasn't there at the last appointment) but hopefully (and negative, of course)!

Currently up late - before aforementioned appointment tomorrow - reading up on HPV.

Girlfriend has/or has had every single one of these symptoms over the past few months:

http://www.medhelp.org/cancer/slideshows/15-Cancer-Symptoms-Women-Ignore/399/1

http://www.medhelp.org/cervical-cancer/slideshows/Cervical-Cancer-What-Every-Woman-Should-Know/642/1

Could it all be HPV-related(?)

I will test for HPV soon by semen PCR and mouth PCR too and i wish to rule that out too beside i got this weird thing on my peinle and i need to knw what is it ! as it is not a blister and its in the same shape and skin surface but have a different color , its itchy and huts some times !! i will try to have a biopsy from it if PCR showed negative results ,,,

 

[patient.journey]

I get positive test for HSV-2, but just a bit over the range, so I have to re-check. But I cant find information about herpes or papiloma causing our symptoms. I believe my infection was sexually and dont know how this crosses the condom, dont have other explanation, may be some unknown virus, hopefully inofensive, but probably the same that cause CFS/ME, Sjorgen, etc.

Use a Western blot for confirmation

 

[patient.journey]

here's some of photos of me which may interest those here. Here is photo of one of the bumps I got on my tongue when I over did things.. this is a photo from last week (this was triggered off by moving house).these.

So you tested positive for herpes ?! which type of it and did you try any antiviral ?

 

[collegeusername]

the link shows the high correlation of hsv and hiv, and their research confirmed that hsv also targets the same T cells as hiv and lowers the cd4 count in the same manner. if a person suffers hsv, the environment the hsv has created is conducive to attack by hiv. the two are mutually reinforcing. these are among people who test positive for both hsv and hiv, so i am not suggesting any of us have hiv. im suggesting that perhaps hsv or another member of the herpes family such as ebv or cmv is producing conditions to assist other viruses in infection and enhancing the attack.

in the first few months i also had mouth ulcers very similar. i never had any bumps like on your tongue though. how easily do you transmit it via saliva? one encounter or multiple required?

 

[urraco2012]

Urraco
How did you get this virus?

I made the mistake of ended the night drunk in a brothel with some girl. I think I had some previous contact before use the condom. Well, 3 weeks after this encounter start all my symptoms. I dont know if I already had HSV or was after this encounter but I dont think this is relationed with all the other symptoms like neck pain, ear pain, headache, swollen nodes, fatigue, diarrheas, rash, lack of appetite, weight loss, low fever, etc etc etc.

 

[urraco2012]

Use a Western blot for confirmation

Unfortunatelly in my country you cant test whatever you want if doctor says its not necessary, specially trying tests like Western Blot tha its not routinely used. I'll have to re-test next month, but do you think the answer is in some kind of herpes?

 

[Hip]

here's some of photos of me which may interest those here. Here is photo of one of the bumps I got on my tongue when I over did things.. this is a photo from last week (this was triggered off by moving house).

Below is a photo of what is possibly herpes (people and doctor thought that by looking at my photo of it) I get on roof of my mouth (also happens when I over do things and get run down a bit). My CFS specialist wont treat this unless I have more then 6 outbreaks in a year (last year I had 2-3 outbreaks of this). I cant find a doctor willing to put me on antivirals for this stuff.

I think the doctor is probably right about your mouth ulcers being due to herpes simplex, Tania. This type of herpes simplex-caused mouth ulcer flare up is known as herpes stomatitis.

If you perform a Google image search on herpes stomatitis, you see very similar mouth ulcers.

I noticed that the virus I caught (which as we discussed before, seems very similar to yours, and is likely an enterovirus) spread to lots of friends and family, and several of those people who contracted my virus got a severe outbreak of herpes simplex cold sores on their lips the day after they caught it. By severe, I mean almost their entire lip area around their mouth was covered in cold sore lesions.

My own blood tests, taken a few years after I caught my enterovirus, still showed reactivation for herpes simplex I (I had herpes simplex I from childhood). I also know one other person who, after catching my virus, then constantly got recurrent herpes stomatitis in their mouth. If they take lysine, though, it keeps the herpes stomatitis mouth ulcers at bay. Something you might try.

So clearly this enterovirus I caught suppresses the immune system in such a way that allows herpes simplex virus to reactivate.

 

[taniaaust1]

So you tested positive for herpes ?! which type of it and did you try any antiviral ?

Nope I havent tested positive by herpes.. doctors havent tested me for herpes!!! They wont give me anything for it at all unless Im having AT LEAST SIX outbreaks per year (my CFS specialist Dr Del Fante said that).. Last year I only had 2-3 outbreaks.

It has always been very hard for me to get doctors to do the tests I need (they hardly test nothing.. I havent even managed to get one to do a natural killer cell function test. I tested positive for carrying CMV and the test said it didnt rule out reactivation..but that wasnt followed up by doctors either. (and then I had the severe issues with HPV in the past to the point that doctors suggest I get an abortion). I also a carrier for toxoplasmosis. I couldnt even get a tilt table test done for my severe ANS issues and still havent ever had one of those (thou I have ALL the autonomic issues Dr David Bell talks about occurring in ME/CFS.. I know due to my own self testing. I cant get the treatment Im needing for my severe POTS.

Secondly.. its very hard for me to get to a doctors clinic for testing when I outbreak in these things.. they come and go sometimes quite rapidly.. so by the time I book in to a clinic and get a ride there.. the outbreak isnt showing up. (It used to be a 2 and a half week wait to get in with my GP).

So doctors have just told me what they think via photos Ive taken of myself and no one has ever given me anti virals. I had severe EBV when younger.. so who knows if that is reactiving at times too.

 

[taniaaust1]

in the first few months i also had mouth ulcers very similar. i never had any bumps like on your tongue though. how easily do you transmit it via saliva? one encounter or multiple required?

Its like any transmissionable thing.. transmissionable one encounter eg just drinking out of my glass.. gave someone ME/CFS and they've been sick now for over 2 years.

 

[taniaaust1]

I think the doctor is probably right about your mouth ulcers being due to herpes simplex, Tania. This type of herpes simplex-caused mouth ulcer flare up is known as herpes stomatitis.

If you perform a Google image search on herpes stomatitis, you see very similar mouth ulcers.

I noticed that the virus I caught (which as we discussed before, seems very similar to yours, and is likely an enterovirus) spread to lots of friends and family, and several of those people who contracted my virus got a severe outbreak of herpes simplex cold sores on their lips the day after they caught it. By severe, I mean almost their entire lip area around their mouth was covered in cold sore lesions..

Thanks.. I did then find a photo which looked much like what I get in my mouth. What I dont understand is that if it is herpes simplex of the cold sore type of herpes why dont I get it on my lips? I know I do carry that kind of herpes as I during childhood had herpes (cold sores) on my lips a few times but I havent had any there since I got ME/CFS (as an adult). Getting on roof of mouth and tongue..and not lips.. just seems weird.

There is also a freckle that appeared in my mouth when I had that outbreak.. freckles appear in mastocytosis which I strongly suspect I have that or mast cell disorder going on too... this freckle I believe just disappeared after the outbreak as I couldnt find it in my mouth when I looked later on (and didnt have it appearing on photos then either). Maybe thou Im flaring in mast cell stuff as well as herpes whenever I get run down. I'd love to know what my NKC function is doing (my white blood cells have often been only "just" within normal range.. almost out of normal range low).

 

[Hip]

What I dont understand is that if it is herpes simplex of the cold sore type of herpes why dont I get it on my lips? I know I do carry that kind of herpes as I during childhood had herpes (cold sores) on my lips a few times but I havent had any there since I got ME/CFS (as an adult). Getting on roof of mouth and tongue..and not lips.. just seems weird.

I would think these herpes simplex outbreaks occur within the mouth, and not on the lips, just because the original enterovirus that we likely caught infects the roof of mouth and the pharynx. So those areas will be where the enterovirus still lives, and where it causes immunosuppression, and therefore, those areas will be where the herpes simplex outbreaks occur.

That's my theory.

 

[hivlikevirus]

I will test for HPV soon by semen PCR and mouth PCR too and i wish to rule that out too beside i got this weird thing on my peinle and i need to knw what is it ! as it is not a blister and its in the same shape and skin surface but have a different color , its itchy and huts some times !! i will try to have a biopsy from it if PCR showed negative results ,,,

Any more details on this? Where abouts / how long has it been there etc etc? Try and find some related / similar images on Google, perhaps?

My girlfriend and I have had sex several times in the last few days but today we are both incredibly sore / irritated. My symptoms look / sound exactly like:

http://en.wikipedia.org/wiki/Balanitis

and my girlfriend - yet again - has thrush and 'a really sore labia'. I also seem to have been getting more and more papules around the head of my penis, too(?) Fatigue is still extreme: crashed at midday - two hours after waking up - and had to have a 4 hour nap before I began to feel even remotely alive.

Anyway. Potentially going off topic. Girlfriend's test results. (Sorry ladies.) Will get them scanned in tomorrow or so but the main gist of it / items of note:

• 'Abnormal', significant reduction in lymphocytes: 1.4 compared to 1.8 in November 2012 and 1.9 in January 2011 (normal range should be 1.5 - 4.0).
• Reduction in white cell count: 5.7 compared to 6.6 and 8.4
• Reduction in monocytes: 0.2 compared to 0.4 and 0.5
• 'Depleted iron stores.'

The rest were all glucose / thyroid / liver and allergy tests and more or less normal / probably irrelevant. No test for HSV I'm afraid.

Other than that the appointment wasn't of much use. Doctor had one of his trouser legs tucked into his sock the whole time and got carried away with neurology, insisting the one-off seizure was probably some form of epilepsy and the white tongue, fatigue, pins and needles etc etc - IN BOTH OF US - was all a red herring. Was nice but didn't respond / not sure if even listening when we told him about the mutual brittle nails, sore throats etc etc etc. 'Go and see a neurologist.' Maybe he was just distracted by the whole seizure thing (probably shouldn't have even mentioned it but it was on the other doctor's notes from last time) and the idea of a virus causing it all is simply out of the question. Wasn't my appointment and didn't want to push it. So yeah, what the hell, girlfriend's calling a neurologist for an EEG tomorrow and I'll chase some of my own stuff up elsewhere.

On Sherezade's recommendation we're also gonna follow up on the some of the blood allergy tests (moderately positive to: house mites / dust allergins / food panel - wheat etc) and get some further testing done on those, and I'll try and get a more up to date CBC done on myself, too (hopefully as well as some HSV testing). Goodbye, life savings(!)

@ Tania, I too had pretty bad EBV when I was younger (15) - maybe it's never quite left me and all of this is some bizarre / contagious re-activation... Did any of you other guys ever have / test for EBV in the past at all?

 

[urraco2012]

I tested positive for EBV in the past, but I didnt have symptoms when I caught it. Maybe this virus is relationed with this or give the conditions to suffer other infections.

 

[Survivor84]

Hello everyone, how are we today? I called the national health institute, there number is 301 496 4000. They have an undiagnosed disease program. I sent for an application. If you get a referral from your doctor that provides all tests and options you have tried you may be eligible. The are located in us, Maryland. Now despite were you are from, they may provide transportation for you. Maybe if we all applied at around the same time we would have a better chance. Just an idea. Maybe someone will take us seriously.

 

[Sushi]

Hello everyone, how are we today? I called the national health institute, there number is 301 496 4000. They have an undiagnosed disease program. I sent for an application. If you get a referral from your doctor that provides all tests and options you have tried you may be eligible. The are located in us, Maryland. Now despite were you are from, they may provide transportation for you. Maybe if we all applied at around the same time we would have a better chance. Just an idea. Maybe someone will take us seriously.

I know 3 ME/CFS patients who have been accepted into that program--they all had very bad experiences and came out with no diagnoses after a very stressful week. And no, they did not listen to the patients and did not work effectively together. Other types of patients have probably had better experiences though.

Sushi

 

[Survivor84]

I know 3 ME/CFS patients who have been accepted into that program--they all had very bad experiences and came out with no diagnoses after a very stressful week. And no, they did not listen to the patients and did not work effectively together. Other types of patients have probably had better experiences though.

Sushi[/quote
Sushi, with this HIV like illness, this has been going on for several years, nobody listens it seems, we are not getting anywhere with regular doctors, we need go to someone of more power. Do you have any suggestions?

 

[taniaaust1]

Any more details on this? Where abouts / how long has it been there etc etc? Try and find some related / similar images on Google, perhaps?

My girlfriend and I have had sex several times in the last few days but today we are both incredibly sore / irritated. My symptoms look / sound exactly like:

http://en.wikipedia.org/wiki/Balanitis

and my girlfriend - yet again - has thrush and 'a really sore labia'. I also seem to have been getting more and more papules around the head of my penis, too(?) Fatigue is still extreme: crashed at midday - two hours after waking up - and had to have a 4 hour nap before I began to feel even remotely alive.

When I had bad thrush (before ME/CFS).. my boyfriend got very red and sore too.. He developed papules where you are saying you have the issue..it was horrible..they even went weepy as he was that sore.

Other than that the appointment wasn't of much use. Doctor had one of his trouser legs tucked into his sock the whole time and got carried away with neurology, insisting the one-off seizure was probably some form of epilepsy and the white tongue, fatigue, pins and needles etc etc - IN BOTH OF US - was all a red herring. Was nice but didn't respond / not sure if even listening when we told him about the mutual brittle nails, sore throats etc etc etc. 'Go and see a neurologist.' Maybe he was just distracted by the whole seizure thing (probably shouldn't have even mentioned it but it was on the other doctor's notes from last time) and the idea of a virus causing it all is simply out of the question. Wasn't my appointment and didn't want to push it. So yeah, what the hell, girlfriend's calling a neurologist for an EEG tomorrow and I'll chase some of my own stuff up elsewhere.

Ive struck the same thing and was told thou my EEGs dont show epilepsy, I got told that its possible I have it still as for some it isnt diagnosed unless one is having the EEG done while actualy having a seizure. So I was told to get to the hospital while having one. How stupid is that.. if Im having a seizure there is no way I can do anything let alone get myself to the hospital for a scan during it. I myself thou think that whole seizure thing is probably another ME thing which has its OWN FORM of seizures which arent epileptic ones as after all we dont have epilepsy but ME.

Her EEG test is a chance to educate a doctor. Take with you when you go to get the results of the test, some info about the abnormalities in these which ME patients get to show the doctor if she has these things going on, AFTER you've actually seen the test results with your own eyes. Insist for a copy of these to see. The ME abnormalities found on EEGs are "non specific" ie caused by other things too and Ive found that doctors tend to just ignore non specific abnormalites if they are there.. often not even telling the person about them!!! (I found out about my abnormalites years later when I got copy of my tests). Two out of three of my EEGs showed the common ME (non specific) abnormality.


There is info on this and the abnormalities found in ME in the canadian ME/CFS consensus document. (there is a link to this at the SA ME/CFS society website on their main page).

The abnormally low iron storage (I have that too, thou I eat meat and a lot of it.. 2-3 times daily).. my CFS specialist has told me he sees that a lot in his ME/CFS patients. His theory is we are using our iron up at a faster then normal rate.. to replace damaged cells.