???

[JohnB]

???

[mr_hopp]

Hey JohnB,

 

I haven't heard of this kind of thing being related to herpes. I know it sounds like the timing is too perfect for it not to be related to the "questionable one."

 

I searched the web for this issue and found a response that Terri Warren (one of the top herpes researchers in the world) had for someone with a similar situation as yours. Looks like she shares the view of the 9 doctors ...

 

"My opinion (and it is just that) is that all this pain is very unlikely to be caused by HSV 2. Yes, some people have nerve pain with herpes, but it is almost always, (in my experience) intermittent and not constant like you are describing.

 

I have certainly had patients who have continuous pain somewhere below the waist, but there is almost always another explanation.

 

To me, these sounds far more like a musculoskeletal problem of some kind rather than herpes. It doesn't sound like the suppressive therapy is making a difference, right?

 

I'm assuming you've had imaging done of some kind in the area to rule out things like disc issues?"

 

http://bit.ly/PSiPnn

[fyrefenyx]

It could also associated with nerves stemming from your sacral plexus. You could follow up with a neurospecialist or try acupuncture too. You've also been tested for every std/sti too?

[JohnB]

thanks adrial, I appreciate your research. I think i probably read the same thing from terry warren, i just didnt know her credibility. Its nice to know that she is one of the top researchers. Thinking if this were to be h, it would be a well warranted stigma. It just seems like im alone and that no one is believing me that i have this pain and that it is all anxiety driven. My problem is work with heavy equipment and if i mess up i could kill myself or someone very very easily. Therefore i cant take anxiety meds or depression meds, or pain meds to help deal with neuropathic pain. its a touchy thing and now going into the busy summer season i dont have time for dr appointments so im getting very worried.

 

Yeah i did 10 days on valtrex 3x a day at 1m, and it didnt seem to help one bit. I think that is the standard shingles treatment. Also had the mri of my back and yeah no disc issues. I used to get back spasms 5 years ago once and a while but nothing like this and the pain was usually in my middle back then.

 

Ive been tested for everything guys can be tested for, im wondering if some of it could be related to a type of hpv but the girl i was with had a swab and nothing came back. Its sad that there is no hpv test for guys.

 

Ive thought about accupuncture as my chiropractor brought it up as possible help. Hes stumped too with all of my pain.

 

 

[WCSDancer2010]

@Johnb

 

You say you work heavy equipment - I'm a massage therapist and I'd suggest you may have Pudendal Nerve Entrapment Syndrome. Repeated mechanical injury from bouncing around in many of the heavy trucks and machinery could easily cause this... I'd stronbly suggest that you get to a MEDICAL massage therapist - someone who understands myofacial release techniques and similar manipulative modalities. They need to work the area of the space between sacrotuberous and sacrospinous ligaments and all the associated areas/muscles.

 

Acupuncture may work too... esp in conjunction with massage ;)

[JohnB]

I'll try that dancer thanks, I'll have to see if there is one in my area. Hopefully there will be, one of the downsides of living in the sticks! I got in for a neurologist appointment, but not until June 5th!

[Sparklepony]

Just throwing my opinion in here. I don't think it's herpes related. I think that if it was even the slightest bit related that one of the nine doctors would pick up on it.

 

Kinda to touch on what tNd mentioned:

http://en.wikipedia.org/wiki/Superior_gluteal_nerve. I was a CNA for awhile and we had patients who had issues with this. While not every single case was cut and dry since pain tolerances, body reactions, age, physical shape, and physical activity could cause variations, it seemed like everything based off of pain in the area your describing. It seems like its more frontal pain and irritation than in the back of your legs.

 

I would definitely look into what Dancer suggested too. With pain like that it could be any number of things.

 

 

 

[JohnB]

Yeah I just have the burning in my face too, and it feels like a swollen throat all the time. Idk maybe a lot could be related to anxiety. Idk I'm so stressed it's really bad. It's all that could make sense or some other type of viral infection.

[JohnB]

now that im over the fact that i dont have herpes, about 99% sure i have HTLV.. The only thing i havent tested for. This time i do have all the symptoms. Herpes would be a blessing compared to this

[WCSDancer2010]

Well, just as you were *sure* you had Herpes, don't get yourself too worked up that you have a definite diagnosis until the Doctor tells you you have it. I see that it can be passed by sexual intercourse but from what I can tell it usually stays latent and I can't find anything that says it shows up as fast as your symptoms.

 

It seems that you are convinced that you got your symptoms from the girl ... it's very, VERY possible that the two things are not at all connected.

 

Go see your Dr - see if they will run the tests. If they say it's negative...believe them and continue your search ...

 

I'm sorry you are going through this ... I'm sure right now ANY answer is better than not knowing....

 

(((HUGS)))

[JohnB]

yeah.. to get out of this mess i would take herpes anyday ill tell you that. Yeah i wouldnt think it would show up that fast either. Its progressively gotten worse this past week with burning in my elbows and hands and even my tongue a bit, along with the swollen throat feeling ive had for a month. I just cant imagine these two things not being connected.. There really isnt a whole lot of info out there on it. All of it seems to be really old. My hands are now shaky and my mouth is incredibly dry. This is all crazy. My back pain and my genital region burning is still there but it is less.

 

THe not knowing part is tough. I would have to think it is a virus of some sort. I just hope its not one that will put me out of work and unable to support a family. All for one night i barely remember...

[JohnB]

also found out her mom had a blood transfusion in the 80's... I wonder if they tested people for htlv after they knew about it all

[WCSDancer2010]

I think you need to get to a Dr and refuse to leave the office until they take this seriously. *suggest* the htlv and request the test but tell them you want them to start testing you for EVERYTHING that might be at all related. Tell them it's getting worse. Don't harp on the possibility of it being from your one night stand... just tell them to figure it out ... it could be an imbalance in your hormones, in vitamins, or a virus, or some kind of disease that suddenly decided to come on. It may just be by chance that it happened after the one nighter. To only focus on that is actually keeping you from the possibility of a diagnosis. Just get in there and get them to start testing you for ANYTHING it might be.

 

(((HUGS)))

[JohnB]

yeah i took the htlv test on monday, hopefully have the results back soon. This is one of the toughest points in my life and i am so incredibly scared. With the way my body is reacting and my future forecast is so scary. I am at an all time low and i dont know how i will be able to get through this. It is incredibly tough, I betrayed myself and my morals. I feel sick non stop. There is no support for this at all. The constant pain is taking its toll. I dont know why i did what i did. It seems unfair, i dont understand why this is happening to me. Theres like no information on htlv and the cdc and government make it seem like it doesnt exist. I called an std hotline to talk to someone about it and they basically laughed at me. Said they never heard of it and that all this pain was in my head. Im tired of everyone thinking that. All for one night that i barely remember, i gave up my family, my job and my health. Everything good in life. I dont know how i will ever recover. All i can say to anyone worried about herpes is i wouldnt be too worried about it,. Not a big deal compared to this. I would say this is worse than hiv..

[WCSDancer2010]

I am at an all time low and i dont know how i will be able to get through this. It is incredibly tough, I betrayed myself and my morals.

 

So here's the deal - you certainly are not helping yourself by continually beating yourself up about your ONE transgression. Honey - we are ALL human ... we ALL make mistakes. And constantly looking in that rear-view mirror is more likely to have you end up in a wreck or throwing things out of alignment..... you HAVE to look forward, forgive yourself, and be kind to yourself if you want to get to the bottom of this. And you HAVE to stop looking for an STD for the answer to all this if that test comes back negative.

 

There is *some* reality to the Dr's thinking this is in your head ... because the human mind is a VERY powerful thing my friend. And when we are convinced we "deserve" a punishment, we can actually cause ourselves to become sick.

 

My father is a classic case ... we had to put my step-mom in an Alzheimers unit and my father is totally convinced she is having sex with some guy there ...claims that he's overheard everyone talking about it, claims they were saying he's in there every night ...claims the guy admitted he was... Now, to try to convince him otherwise we have a "nanny-cam" in her room so we can see who comes and goes. And in nearly 6 months - no sign of the guy and she never leaves her room at night (which is when my father is convinced this is happening). And he STILL can't believe it's not happening even with all the evidence to the contrary. I posed my theory to him that he feels he "deserves" to have her cheat on him because he allowed the family to put her in that "prison" as he calls it. While he didn't disagree, he still want's me to continue to monitor the nanny-cam images (at great time expense to me).

 

So I can see where they are coming from. So let me pose this idea to you. Talk to yourself as you would a friend - forgive yourself as you would a friend - if necessary, have a ceremony to let go of the guilt. Do whatever you need to in order to put that in the past. If this test comes back negative, find a new Dr - give them your symptoms, DON'T mention anything about the woman ... just give facts about when it started and the progression of the symptoms. Then trust them to get to the bottom of it, and see what happens. You can mention what has been tested for, just so they know, but don't make any reference to your suspicions ... at least, not unless you find something that is completely unrelated to anything to do with a STI ... I mean, there's tons of other things like MS and other nerve or musculo-skeletal things that should be being looked at. (BTW, did you test for Lyme? I know you got the symptoms in the winter but like Herpes you could have been carrying it for a long time without obvious symptoms).

 

I can't imagine how frustrating this is for you.... but if you want to salvage what you can of your family and health, you HAVE to stop beating yourself up. I mean, really .... you are emotionally beating yourself up and your body needs you to stop so any REAL disease can become more apparent ...

 

(((HUGS)))

[willow]

Chin up john! And hang in there!

Im not saying u r making up the pain in heard.. but i agree with dancer, you need to stop beating yourself up for this!

 

Take a breath, and tell yourself this " I am strong. I am amazing. I do Not deserve any punishment."

Dont forget that, you are a good person!

and you deserve happiness, as well as comfort.

 

I myself have seen 9 different doctors befor i finalky found one that is willing to do a blood test for hsv, ...9...

 

The emotional torture you are putting youself through is imp, worse than the physical torture you feel

Im sorry you are going through all this right now, dont give up though! There will be someone who will figure out what is going on, unfortunatly it might take time..

 

Xox

[JohnB]

Thanks dancer and willow. My insecurities through all this with my ex has also played out kind of like your father dancer. Today has been better for a few reasons. First off i no doubt have a clear negative herpes test so i know its not that. So ive read also that there is a strong correlation between EBV (mono) and sjogrens syndrome. Mono is a virus and so it can affect your nerves like that and sjogrens syndrome is the dry mouth and dry eye stuff. Im really thinking that could be a possibility. I should have my EBV and my CMV test back tomorrow. Ebv would be a little easier to cope with. EBV and Sjogrens can both cause nerve pain and the swollen node pain and also possible issues with the thyroid. That could all make a little more sense than some rare htlv. I called other hotlines today. They really make me feel better. I wish there were more hotlines out there for people. I called one in florida where they say htlv is more prominent. and they never heard of it. I cant imagine i would be the first clinical case of it up here in minnesota. Also called other ones in the south too, maybe like 5-6 total and none of them knew what i was talking about either. So theoretically i should be alright. We will see though pending results. I wish there was more information out there for people who are suffering from htlv. they say there are 500,000 people in the us with it. Yet the cdc and the govt basically denies its here. Does it have to reach epidemic status before peoples voices are heard? kinda sad really! I suppose there are a lot of diseases that are neglected because they dont affect the masses.

 

Yes i did test for lyme. Even though most clinics only test for a few strains. My uncle was tested 3-4 times and was negative, before he went to clinic that tested for all 7 strains i believe. He has constant pain from it as well.

 

Its hard not to beat myself up for it. It was a strange thing how it all went down. Im hoping to get out of this and be ok without anything serious. Yes i keep telling myself that i am a good person and dont deserve it and that i can get through it. Either way i have to, I'm just really hoping its nothing serious. I could handle EBV or CMV. It would be hard to handle htlv as it would affect my career. But i would have to because that would be my cards. Hopefully it doesnt take too much time as work is picking up and i wont have much time off after next week until september.

 

I should get my ebv and cmv test tomorrow. I hope one of those is positive and then have the negative htlv test. Then my mind can be at ease and i can just be treated for it.

 

 

[JohnB]

Sjogrens could also explain my lips burning and that irritating pain on the tip of my penis. With the bumps on my corona of glans and the bumps on my lips that could be the sjogrens messing with the production of oil from the sebaceaous glands. I feel like i am getting closer to my answer in all this without the dr's help mostly.

[WCSDancer2010]

I'll be crossing my fingers for you ... keep us posted...

 

[JohnB]

ok, htlv came back negative. Thank the lord. Ebv came back negative as well. CMV came back positive. Hard to say but im thinking that this is what did it. Most people already have cmv as a child and dont have much for symptoms. however when an adult catches it ive read it tends to be more worse. So as i previously stated i think i contracted cmv and have sjogrens syndrome so i had a bad immune response to it. Thats as best i can come up with the results i have so far. And since all tests are negative i have to accept that. This is good news.

[JohnB]

my dr doesnt seem to think that i should be concerned of passing cmv onto someone else. Should i be concerned about this or should i just brush it off. If i sleep with my ex again should i be worried about her catching this off of me? shes on bc and i know she hasnt slept around, i should be ok to not wear a condom?

[WCSDancer2010]

Well, CMV isn't something any of us know about here... my 2 trusted sources are Mayo Clinic and the CDC ..

 

http://www.mayoclinic.org/diseases-conditions/cmv/basics/definition/con-20029514

 

http://www.cdc.gov/cmv/overview.html

 

According to the CDC, 50-80% of adults have cmv by the time they are 40.... interesting that we are not told about this one because it is spread by sharing forks/drinks/saliva/sex .... so you could well have had this for quite some time...

 

It seems that anti-virals are used for this one too and they recomend you wear a condom for sex. That's about all I can tell you ... your Dr should help to fill you in.

 

At least you have an answer and it's not the worst of what the possibilities are ...

 

 

(((HUGS)))

[JohnB]

Thanks for everything dancer! It's kind of a strange thing to get. It's weird cause I mean I could transfer it via oral and there'd be no way to control it. Obviously I don't want to put anyone through what I'm going through but really there isn't a way to

[JohnB]

Protect someone fully. My immune system is depleted for some reason and the dr's aren't sure why I have such bad reaction to it. I don't plan on having sex anytime soon but I think if I get on te antiviral medication valganciclovir 900mg/ day for 10 days. It should clear it up. Hoping so, so close to be getting rid of the pain!

[WCSDancer2010]

It's kind of a strange thing to get.

 

Sounds like if 50-80% have it it's not uncommon at all ... it sounds like you are one of the few that is actually affected by it...that most people just carry it and never have any signs.... so I wouldn't overthink it .... use protection and let people know you've had it but odds are they are already carrying it ....