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Certain HIV positive, but negative tests (Page 107)

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June 5th, 2014
Hi Tony,

This doctor I'm seeing has a private room at the Immunology and Institute of Infectious diseases in WA and he seems to be on the ball being a HIV specialist physician.
I told him of my symptoms over the last 2+ years and the grief I've suffered plus I'm at the end of my tether and he seems caring enough to pursue my illness further. Not like the other so called doctors who don't give a crap and just want to get paid.
I do have increased oil production due to my hair being a lot more oily compared to before the incident and I wash my face a couple of times a day.
I'm 38 and used to be mega fit but due to body pains I've slowed down a lot and couldn't even contemplate exercising like I used to.
I do have slimy mucous faeces from time to time and my throat doesn't seem to quit no matter how my yoghurt and inner health probiotics I take.
Cheers
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replied June 5th, 2014
Extremely eHealthy
You're lucky that you found that doctor, since most doctors would ignore everything you are saying, tell you that you are crazy, and send you to a psychiatrist. Our symptoms (oil, pain) are very similar indeed.

Best wishes.
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replied June 9th, 2014
Experienced User
hi TD,

how are you now? hope you are fine.
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replied June 9th, 2014
Extremely eHealthy
Thanks for asking Feng - the usual pain & suffering.

Best wishes.
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replied June 9th, 2014
Experienced User
Hi Downenout,

what do the doctor and you find about the virus?
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replied June 10th, 2014
Hi Feng,

I'm still awaiting the doctor to get back to me with the results. I'm back at work so it will be at least in a weeks time.
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replied June 10th, 2014
Experienced User
Hi Downenout,

thanks for your reply. wish have a good result.
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replied June 10th, 2014
Black dots all over the body ...
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replied June 11th, 2014
Extremely eHealthy
Yes, one of my girlfriends had the same thing.
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replied June 12th, 2014
Experienced User
Hello everyone- just a quick note. I am almost at 2 years and while I am technically better, this thing comes back hard.

For me it is eye pain, chest pain, testicle pain and fatigue. - seems to phase in and out for me. Probably my immune system fights and wins then stops an the virus comes back.

Also very weird, small blood spatter in stool from irritation - I guess.

Anyway, my doc asked me to wait 6 months before going back so.... I have a little more time before I try again.

This thing is so so strange.
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replied June 12th, 2014
Extremely eHealthy
WS,

In addition to the anal blood, I even had blood coming out of my ears. You have to keep in mind that this virus makes the immune system crazy, so each of us can experience different symptoms. Try the supplements that I suggested, they go a long way in calming symptoms, especially the pain. The doctors aren't going to do anything for us until we have full blown LGL leukemia, like Doctor Loughlin's cohort. And even then they are going to say it's not a virus LOL. What an absolute joke these doctors are.

Best wishes.
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replied June 13th, 2014
Experienced User
agree. doctor doesn't do anything, but also say it is caused by your stress.
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replied June 13th, 2014
Extremely eHealthy
Feng,

True - when they can't explain an illness, they blame it on stress and insanity, which is unfair to the patient.

Best wishes.
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replied June 24th, 2014
Experienced User
Hi guys, how are you now? wish all of you are well.
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This post has been removed because it did not meet our Community Guidelines.

replied June 25th, 2014
Experienced User
I also have the issue with the blood in stool. All kind of weird symptoms.

I approaching the 3 years mark with this illness and I am still feeling some of the symptoms I felt from the initial stage.
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replied June 26th, 2014
Experienced User
me too.

I approaching the 2 years mark with this illness and I am still feeling some of the symptoms I felt from the initial stage.

do we have hope or not?
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replied June 30th, 2014
Extremely eHealthy
I try to remain hopeful.
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replied June 30th, 2014
Experienced User
Hi TonyDewitt,

what medicines do you use now? do they release your symptoms? can you share it to me?
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replied July 3rd, 2014
Hi All,

Well I went back to the HIV doctor and basically his superiors flat out refused to do a Western Blot which is a real shame.
They did a PCR DNA and another Ab which came back negative.
My ANA came back with 20 units and anything over 7 is pos, with a speckled but homogeneous pattern. ENA came back negative so god knows. Everything else came back with in the limits.
My symptoms match Sjogrens Disorder (I believe it to be secondary which is very common in people with HTLV, Hep C, EBV) but didn't appear in the ENA. Very frustrating.
I have just had another series of tests performed today including anti-DNA, CPK, ANA etc with a different lab so will see what happens and have an appointment with a Rheumatologist on the 17/7.
The HIV doctor did say you probably won't agree but he doesn't think it's HTLV and I've pretty much given up on the idea of getting a western blot to find out for sure.
I suppose the good thing to come out of this testing is the 2 lots of positive ANA's so all of those other doctors who said it's all in my head can chew on that.
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replied July 4th, 2014
Extremely eHealthy
Thanks for sharing your results with us - it's insane that they won't do a Western Blot test, since if you did take that test & your protein bands lined up with Doctor Loughlin's group, then we'd have a commonality - for this reason, you taking the WB test is vital.

Best wishes.
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replied July 7th, 2014
Experienced User
My girlfriend was suffering from severe headaches last year. They found a small tumor but now that she got tested last week the tumor has grown significantly. I'm so scared I believe this is all connected. I hope everyone keeps fighting for answers. I'm in a really tough and hurtful stage right now. Just when I thought we were getting better. This comes up..
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replied July 8th, 2014
Extremely eHealthy
D-man,

I'm very sorry about your girlfriend's tumor - like you, I fear that all of our symptoms are connected. I have a lump on my ring finger that I am afraid to have a doctor look at.

Best wishes.
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replied July 10th, 2014
Experienced User
Hi Depressedman,

I am sorry to hear that. take care, hope everything will be ok.
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replied July 15th, 2014
Hi guys, found this thread very interesting. I'll Let you in on my story. I'm a 20 year old male from the UK. Had unprotected sex with a a woman in her forties, unfortunately she bled quite profusely during the intercourse resulting in my penis being bathed in her blood(apologies for graphic description). Had a fever for a couple of days at 6 weeks and haven't been right since. Tested negative for everything at the GUM clinic: all the blood bournes and bacterials. I also had a CBC at 9 weeks post exposure which was all normal. I was so depressed for months thinking I had HIV but I had two negative DUO tests at 6 and 13 weeks. The health adviser recommended I should get on with my life and forget about my symptoms suggesting they were of psychological origin. I did this for a period but then I began to question why my lower back still ached along with my general malaise and weakness. Had blood drawn for a HTLV antibody test yesterday as I have been having problems urinating and have been constipated over the last few days. Has anyone on this forum actually tested positive for HTLV-1 after one time exposure. Female to male transmission seems to be very rare sexually. Also I find it difficult to believe that by some extraordinary chance that I was infected I am experiencing these symptoms this early. Been to my GP several times who says that these symptoms will all go away with time - what? Chances are astronomical that it's HTLV however people do get struck by lightning, can't see what else this could be at this point. I'll post my results in the next few days. Cheers Guys, I wish you well from the UK!
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replied July 24th, 2014
Extremely eHealthy
DT100,

1. We are ALL make, and ALL sick after ONE time exposure.

2. Backache is a classic symptom.

3. Chances are astronomical? At least three people in my family are sick like this, and we don't even associate with the same people, so this has nothing to do with the chances of being struck by lightning.
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replied July 15th, 2014
testsRwrong Hope you are keeping well, I am new to the this forum but i to have unexplained symptoms like you and i think i got this many years ago,So i was wondering if you have got any answers to your symptoms and if so could you help me,i live in the uk many thanks in advace..
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replied July 16th, 2014
Negative HTLV 1/2 antibody tests. I think I will take these at face value and accept I have not been exposed to this particular virus! I know a lot of you are skeptical about the antibody test but if it were the virus causing my symptoms surely they'd be at a detectable level in my blood stream. Not sure where to go from here really but i take solace from my negative test results. May opt for a PCR in the future but I'm fairly confident with regards to my results. It's very scary to have to face with one's impending mortality, it also makes yo realise that you must cherish each and every day! My love goes out to all of you guys.
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replied July 16th, 2014
Experienced User
Guys, I am seeing my 3rd infectious disease dr. tomorrow

Question: does anyone have any skin issues? What kind? Hiv can cause these types of skin issues, does htlv ? Any other diseases that cause this?
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replied July 23rd, 2014
Experienced User
Hi wyomingscared,

I have skin issue: red spot, Itching Searing.
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replied July 24th, 2014
Extremely eHealthy
WS,

My skins issues are:

1. Oily.
2. Itchy.
3. Lesions that don't heal for a long time (nose, face, arm, neck, head, chest).
4. Sebhorric Dermatitis around the bridge of my nose.

HTLV is highly involved with the skin, recall that it causes Mycosis Fungoides, which is SUBCUTANEOUS T-cell lymphoma, meaning it affects the T-cells that maintain your skin.

Best wishes.
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replied July 30th, 2014
Experienced User
- a 100 of new birthmarks all over my body
- pimples on my sides
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replied July 24th, 2014
Experienced User
So yesterday me and my GF were at the Mayo Clinic Hospital in Rochester Mn. She was sent there by her doctor due to the puitery tumor that is growing in her head. Well we also let the doctor know all the new and strange symptoms she has been experiencing for the past 2+ years.

Headache (migraine levels)
Numbness and tingling on right side of body (arm ,hand, leg and foot)
Water retention (feet and hands feel swollen) some times
Weight gain. (30lbs) I have also gained about 20lbs myself
Skin problems (red bumps, itchy, acne , stretch marks
Muscle and joint pain more than usual ( keep in mind my Gf has Lupus)
Constipation
Pelvic sensitivity
All I can think of that we explained to the nurse .

Doctors and nurses seem very intelligent and caring.
They drew blood for testing and took another head MRI and pelvic area ultrasound.
That was all in one day. Spent all day at Mayo Clinic. (So big)
We didn't bring up std or blood born pathogens. Only to not take there attention or to stop taking us serious . so I hope they can focus on her symptoms and find out what's wrong .

She goes back today to speak to the surgeon. And possibly receive the lab results. I will let you guys know what they have for us. Thanks for your time.
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replied July 24th, 2014
Extremely eHealthy
D-man,

Best wishes to your GF on her treatment and recovery.
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replied July 24th, 2014
Experienced User
Wyomingscared please share your results.

Keep in mind my gf already suffered from lupus which affects her immune system . so this is affecting her twice as fast.

I've been having diarrhea for the last couple weeks and headaches. So I will be going in for an ct scan on my liver and stomach. And an MRI on my head as well. In case I'm suffering from a overgrowth of the puietery gland or another abnormal thing.. I was starting to accept my new issues and just live with them. But now I'm so scared. That its slowly damaging certain organs.

All I think about is dying. And making memories to leave behind for my loved ones. I'll talk to you guys soon..
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replied July 24th, 2014
Extremely eHealthy
D-man,

Same here, I keep hoping that I will linger on with the pain & suffering from this disease, but I can't forget people who have died from this illness. Look at Doctor Bob, he suddenly wasn't feeling well, went to the hospital, and was dead two hours later. It doesn't seem fair that our lives can just end like that.

Best wishes.
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replied July 24th, 2014
Experienced User
Thank you for your help and love Tony..

Well my Gf situation is a huge mess. I will up date you guys when I figure out what's going to happen. But in the meantime I've been researching other STDs that we have missed. On the CDC website. A few stuff we have not been tested for guys. Please look into it. Here's a list.

Granuloma inguiale
Proctitis , Proctocolitis , Enterites
Epididymitis
Pid (pelvic inflammatory Disease)
Gonoccal infections
Cervicitis
Nongoncoccal urethritis
Uretritis

ALL THESE ARE TREATED AND CURED WITH "DOXYCYCLINE" 100MG. FOR ATLEAST 10+ DAYS. PLEASE EVERYONE TRY AND GO TO YOUR DOCTOR OR STD CLINIC. AND REQUEST A 2-3 WEEK PRESCRIPTION OF DOXYCYCLINE. MAKE UP WHATEVER STORY NEEDED. IM SURE ATLEAST ONE OF US WILL BE CURED. IF NOT ALL. PLEASE EVERYONE TAKE THIS VERY SERIOUS. IM GOING TO MY CLINIC ON MONDAY.

2-3 WEEK PRESCRIPTION OF "100MG DOXYCYCLINE" TWO PILLS PER DAY..
GOOD LUCK MY FRIENDS.
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replied July 25th, 2014
Extremely eHealthy
You're very welcome D-man & please let us know how it goes.
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replied August 1st, 2014
Experienced User
Wish your all the best D-man. Currently I still have all the symptoms. Also much more numbness and I feel my balance has worsened, falling etc.

Good news I got a medicine for my chronic blocked nose. ''Nasonex'' seems to be working for that for me. I failed some other ones, but this one works.

Very interested to hear what Mayo clinic will say, because I was hoping to go there too.
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replied August 1st, 2014
Experienced User
Also would like to point out that for some people an autoimmune disease might be the case. Stress can trigger this. I am NOT saying your symtoms might be caused by stress. I am saying it might be that stress has caused an autoimmune disease to flare up. I read that this is possible, so just throwing it out here.
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replied August 1st, 2014
How about airborne ebola
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replied August 1st, 2014
12 Monkeys
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replied August 1st, 2014
I know I have a virus which causes secondary sjogrens disorder maybe HTLV or some other variant but the ultimate is airborne ebola. I read the hot zone back in the 90's and it scared me but now another ebola outbreak possibly the worst one yet with infected people on airplanes it makes you think the end is closer than we think. I need to buy a reliable truck so I can disappear off the grid if needed and you people over there take care.
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