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JohnB

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  1. ok.. i think thats what ill do. When i said strange thing to get i mean strange to have such a horrible reaction to it. I no doubt am not having sex with someone until i know them on a deeper level. I am going to build my relationship up with them first then when the time is right i will take her in to get tested and i would get tested to ease her mind as well. This has been the biggest eye opener. Sex is crazy, if only we couldve waited til we got married to enjoy how life wouldve been so much more simpler.
  2. 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!
  3. 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
  4. 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?
  5. 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.
  6. 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.
  7. 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.
  8. 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..
  9. 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
  10. 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...
  11. 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
  12. 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.
  13. 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!
  14. 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.
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