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Certain HIV positive, but negative tests (Page 57)

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December 4th, 2012
Experienced User
I am now even feeling something wrong inside my brain. There are some tissues feeling "cool" inside.

Tony, do you mind to share more alberto's experience? What does he mean by reduction of symptoms? He couldnt walk before and he regain the walking ability? Or what are the symptoms diseapeared?

I need to wait one more week to go.
The doctor there send me paper where after 4 treatments done their hiv patients got 90% viral load reduced. I am really looking forward to this
I just do not want to wait.
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replied December 4th, 2012
Extremely eHealthy
Not waiting is important
Hope,

Yes, I experienced brain / head problems as well, myself and one of my girlfriends had problems remembering words when we spoke. HTLV's effect on the brain and spinal cord is well documented.

Alberto seldomly writes to me, but he is a big advocate of hyperthermia. He introduced me to the paper by Hatanaka suggesting it as a treatment / cure for HTLV, and wants to treat himself, his wife, and his child with it. His severe fever from a urinary tract infection alleviated his HAM symptoms (difficulty walking) for a year. To be clear, he is not in a wheelchair, but has trouble with his legs, has trouble walking, along with his wife and child - this breaks my heart.

Your point about not wanting to wait is most important - Alberto has been infected for seven years, and now has leukemia, which makes this disease as bad as (or worse than) HIV/AIDS in terms of the amount of time to disease progression and death.

When I spoke to the hyperthermia center on the phone, they said that they would provide the treatments to me at a cost of $1,000. They also sent me the papers that you mentioned, explaining how the treatment works, and I noticed that they mentioned "leukemia virus" in their papers. This is important because any treatment that any of us pursue to treat this illness is a step in the right direction. Hope, you are doing us all a great service by taking this journey and spending your time and money on this treatment - I would do the same if the treatment center wasn't so far away from me. Again, please send us updates and experiences on your treatment. Because you are the first to treat the virus this way, you will be like the first person walking on the moon for all of us.

Best wishes.
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replied December 5th, 2012
Experienced User
So my GF is have menstrual problems.. she has missed her period for 3 months.. and she got her test results today that her hormone levels here abnormal and will have see see a specialist in that department.. my question is HAVE ANY OF YOUR GF/WIFE'S EXPERIENCED ANYTHING LIKE THIS? I'm pretty scared..

My symptoms are still the same.. I keep getting folluculittis on body and throat thing.. I'm also get hot/cold flashes on my body mostly feet and legs.. I have an appt with my doctor on Monday and I hope she can do tests I ask for.. I'm so tired of this..

I will update you guys on our app's and results when I get them..
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replied December 5th, 2012
Extremely eHealthy
D-man,

Sorry about your GF, this disease definitely messes with the menstrual cycle.

Best wishes.
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replied December 6th, 2012
Experienced User
My GF has an appt with a endocrinologist on Dec. 18.. maybe they can figure out what's causing her symptoms..

Has anybody tested for MRSA? I'm gonna ask for that test on Monday and hopefully Mycoplasma
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replied December 6th, 2012
Extremely eHealthy
D-man,

Perhaps your endocrinologist can look for elevated levels of inflammation markers? Since the disease survives by causing inflammation, it would be helpful to test for inflammation.

Best wishes.
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replied December 10th, 2012
Experienced User
there is a hospital in chung hing (china) will be researching china aids like disease conducting at the end of dec. WHOEVER interested please leave me message. U will need to go china and paid for ur own loving expenses.
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replied December 10th, 2012
Extremely eHealthy
Hope,

Your offer is appreciated, but most of us aren't anywhere near China. That's also why getting the Hyperthermia treatments are problematic - you're probably the closest to the Hyperthermia Treatment center geographically than any of us.

Best wishes.
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replied December 10th, 2012
Experienced User
My doctor appt was a joke.. she didn't listen to anything I said.. only suggested I change wash soap and drink prune juice! Really? Now I have to give a poop sample to see if my h pylori is gone.. also I have 2 appts one with an ent doctor and one with a gastronalagist.. will see what they say.. I tired of not being taking serious and wasting money..
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replied December 11th, 2012
Extremely eHealthy
D-man,

I appreciate you continuing to try with the doctors, that helps because it confirms that there's no doctor out there than can figure out what this is. I'm still convinced that it's HTLV after six negative tests (1 PCR, 5 antibody) after being sick over a year. Doctors dont know what this is, and many people have died from it, over the last few years I read that a group of friends with this all died one by one of lymphoma (caused by HTLV) without testing positive for HTLV. My thirty friends and I could become that group; as far as I know, the doctors didn't do anything for that group, and I feel they wouldn't do anything for my group neither.

We could spend the rest of our lives writing in this forum how the doctors are not helping us. We all know that we are sick, and we are not crazy. We don't need doctors, we need treatment instead. I've discussed a few treatments (Xeljanz, Azacytidine, Hyperthermia), and tomorrow at 1pm I am going to be on a call with a group from another forum to speak love with Doctor Todd Rider - he is testing an approach that will work on ANY virus called DRACO. I don't care what country you are in, what kind of exposure you had, THIS IS THE TREATMENT FOR US. I'm going to try to raise investment money to make this a reality for all of us.

Best wishes.
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replied December 11th, 2012
Experienced User
please let him know we are wilig to go for undertable trial
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replied December 11th, 2012
Extremely eHealthy
Hope,

We had the call a few hours ago and it was GREAT - Doctor Rider spoke about the current status of his research and what it would take to develop a treatment for ANY virus. I made sure that I meantioned HTLV, and he seemed interested in that as well - I also mentioned that myself and three dozen of my friends (you guys included) need this treatment. The next step for the group I am working with is to establish a corporation to provide money to his research. He claims that it will take about three years to fully complete testing and would cost about 1.5 million. I will let you know how things develop from this point on.

Best wishes.
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replied December 16th, 2012
First post. Been trying to resist for a while now but ...just can't any longer.

Posted on alternative forum 9 weeks ago (3 weeks post 'low / minimal risk' exposure):

Quote:
3 weeks ago - whilst in Indonesia - had [minimal / low-risk] exposure'.

24 hours later -> onwards, I've had (unprotected) sex with my girlfriend numerous times. Several weeks have passed and I have since had *every* 'standard' single seroconversion symptom (fever / diarrhea / sore throat / hives / muscle ache / fatigue). I'm not sure if this is (hopefully) just due to over-research / guilt / anxiety BUT:

My girlfriend - who is completely unaware of the situation / therefore not even remotely anxious - has also had all of the above, PLUS blood in urine, bladder incontinence, mouth ulcers AND weight loss of >1kg in less than a week.

If not what-I-really-*really*-hope-this-isn't, what could it be...? Ideally just flu + UTI + hayfever(?) I had mono 8 years ago but surely I couldn't only just be passing that on now?

For the record: I had a full blood/urine/swab STI test at the 8 day mark (all came back completely negative), but after recent research I've discovered that would be far too early to be conclusive anyway, right(?)

Please advise / help. Have resisted posting this for 3 weeks now but it's at the point where I am literally CONSUMED by this worry and completely sick to my stomach. Many thanks in advance.


After being shut down by pretty much everyone 'you had no risk' 'it's just anxiety' etc etc etc: posted this on yet another forum 1 week later / 4 weeks post-exposure:

Quote:
45 days ago - whilst traveling across Indonesia - I had what I believe to be a very high risk encounter.

After about a week or two of being back - and after multiple instances of unprotected sex with my girlfriend - we both began exhibiting symptoms.

First came the fever / diarrhea / sore throat / runny nose / itchy hives / muscle ache / numb lips / minor torso / facial rash and fatigue. These have been plaguing us daily right up until this very moment. We are both also often covered in bruises despite not doing anything even remotely physical / labor intensive during the day.

(The muscle ache / fatigue / bruising in my case is so severe I literally feel like I can barely walk, or lift my arms. This is regardless of eating well - when I do have an appetite - and always getting between 8-12 hours sleep each and every night.)

I've convinced myself several times this is / was all just due to over-research / guilt / anxiety but then that wouldn't explain my girlfriend's symptoms (who had absolutely no idea that there might be an issue / or what the symptoms might be).

She was the first to have oral ulcers and thrush - both oral and vaginal and has also had bladder incontinence, extreme weight loss (mine isn't quite as bad) and blood in her urine. Pins and needles is a frequent occurrence in our hands and feet - mine maybe once an hour or so / particularly after waking up - and my girlfriend 'four, maybe five times a day'.

We both had full STI and UTI blood & urine tests at the one week and four week mark and EVERYTHING has come back negative. Everything.

Today - 40 days since exposure - and the reason I'm finally resorting to posting this - is because things, in my mind, have become significantly worse. I woke up - as usual drenched in sweat - and noticed an extreme, dark-red looking rash has appeared up on one of my palms (the small ones I've seen on my chest are usually quite faint and disappear after a few hours).

Several hours later my girlfriend fainted and seizured - for almost a minute - right in front of me. Her eyes rolled back in her head and even when she did finally come round it took a good few minutes for her to even know where she was or what had happened. This has never, ever happened before. She insists she is fine - 'I'm just run down', with an innocent - wonderful - but breaking smile on her face.

I am absolutely positive / terrified this is early HIV Encephalitis - why else would NOTHING be showing up in any tests that could possibly explain ANY of this? Nothing. No STDs / UTIs / vitamin deficiencies / mono / bugs etc etc etc?

I've told them I feel our immune systems aren't the greatest right now (which would explain the antibody results) but the doctors just say that regardless, there's nothing they can do right now as the fact is: the tests *are* both / all still coming up negative. They haven't offered any other explanations or treatment. 'Come back in two weeks / at the 6 week mark'. Obviously I will but for now I just feel hopeless. Hopeless, desperate and suicidal with anxiety.

Right now my girlfriend is sleeping next to me - beautiful, my world - but pale, gaunt, a raised itchy rash on her neck and face, and white / cracked skin in the corners of her mouth.

Please. Are there any tests - other than the viral load (which they won't do) - that might show anything / finally get us - her - started on treatment? Please.


Posted two weeks after that / six weeks post-exposure:

Quote:
Hi guys, just a quick update.

Six week test results came back:

-----------------------------

'HIV 1/2 Antigen/Antibody: Not Detected (not sure on generation - trying to find out)
Heb B surface antigen: Not Detected
Hep C antibody: Not Detected

HAEMATOLOGY
Haeomogloben 159 g/L (130-180)
Red cell count 5.4 x10^12/L (4.5-6.5)
Haematocrit 0.48 (0.40-0.54)
MCV 89 fL (80-100)
MCH 29 pg (27-32)
MCHC 332 g/L (310-360)
RDW 12.8 (10-15)
Platelets 218 x10^9/L (150-400)
White cell count5.5 x10^9/L (4.0-11.0)
Neurophils 3.1 x10^9/L (2.0-7.5)
Lymphocytes 1.8 x10^9/L (1.2-4.0)
Monocytes 0.5 x10^9/L (0.2-1.0)
Eosinophils <0.1 x10^9/L (0.0-0.5)
Basophils <0.1 x10^9/L (0.0-0.1)
IM screening test: Negative
Atypical mononuclear cells NOT seen. The erythrocytes and platelets appear normal in morphology.

Syphilis Serology
Rapid Plasma Reagin (RPR): Non reactive
Syphilis antibody (EIA): Non reactive

Neisseria gonorrhoeae PCR
Specimin: First void urine
Neisseria gonorrhoeae DNA: Not detected

Chlamydia trachomatic PCR
Specimin: First void urine
Chlamydia trachomatis DNA: Not detected'

-----------------------------

Girlfriend's tests were a lot simpler (think they were just for HIV and HEP B/C) but also came back negative.

Had her post-seizure MRI last week too but it's going to be another 2 weeks (and another $300) before she gets consulted on the results(?!) Absolute joke.

But yes, anyway. I know 'six week results are 95%+ conclusive' / no-one here - or on any of the other boards - has ever seen a six week negative turn into a positive but...

Something is wrong with us. Something is still wrong with us. Today marks (almost) the 8 week post-potential-exposure / symptoms mark.

On top of everything mentioned in the last thread (symptoms both my girlfriend and I have been experiencing):

Sore throat
Mouth ulcers / thrush
Crippling fatigue
Muscle pain / aches
Swollen lymph nodes
Itchy Skin
*Blood in urine
*Mysterious kidney-bean sized lump underneath chin/top of neck
*vaginal thrush/discharge
(*girlfriend only)
Night sweats
Hives
Miscelleanous rashes
Bruising
Pins and needles
Chills
Temperature
Rash on right palm etc etc

Things have only become worse.

The ever-frequent hands & feet pins and needles has - on occasion - actually become painful. A few nights ago the pain actually woke me up: the normal tingling sensation in my fingers (can feel it now writing this) spread all the way up to my inner elbow and actually felt like a pins & needles ...cramping almost(?) Subsided after a few minutes.

Both (still) often covered in random itchy hives (had a very itchy cluster on my bottom a few days ago); frequent mouth ulcers (some painful, some not); diarrhea / stomach cramping / (still / persistant) sore throat / girlfriend has very itchy / dry lips / face(?); slight fungal infection (brown crust) on right thumb nail and right big-toe nail(?)

Left lymph node still feels like it's trying to escape out of the side of my neck.

Most worrying at the moment is the dizzyness / confusion / frequent feelings of sudden vertigo / panic though. Have both been getting sudden feelings of intense dizzyness - especially after eating and/or hot showers / standing up too fast etc etc. Very unusual / have never had anything like this before. Have never had anything like any of this before.

Short term memory is also particularly bad right now. Maybe it's just anxiety. Maybe it's all just anxiety. Normally very alert girlfriend keeps forgetting to lock the car doors / turn the gas off / loosing her train of thought mid-conversation etc etc; I have huge difficulty focusing on / remembering pretty much *anything*.

Speaking of (all of the above / plus, coupled with the intense fatigue): I quit my job yesterday / first day off today. Just couldn't cope.

(If this isn't what-I-really-hope-it-isn't (still can't say it); then I just know it's still going to be something really, really bad. When else - amongst *everything* else - are pins and needles ever contagious?!)

At the very least though, if - by some miracle - this ISN'T HIV related then ****, it's the biggest indicator that symptoms truly, cannot ever be relied upon. In an ideal world this will hopefully just be a miracle story where there was possible exposure / *every* possible symptom (in TWO people) / a complete loss of faith and then still a negative result.

Not sure what I'm hoping to achive by writing this thread just... ugh.

Plan for the next week or so is to just get ridiculous amount of sleep and go for another test at the 8 or 9 week mark.

Suggestions, advice...(?) Has anyone ever seen or heard of anything similar(?) Maybe worth mentioning we're both still really quite young and (at least, were) incredibly healthy / worry free.

(Hope these threads don't come across as too repetitive; I KNOW testing is the only reliable / worthwhile thing to do right now but... just need somewhere to organize my thoughts.)

Thanks in advance.


Update (here only) 9 weeks post-exposure:

Still symptomatic. All of the above - still - PLUS: back pain (both lower, middle and upper), stiff neck, eye floaters, heat intolerence, dry mouth, eye twitch, entire-face twitch (have just discovered if I fill my mouth with air / protrude my lips so-to-speak, my entire face literally twitches. Substantially. Visibly.).

Girlfriend - as Depressedman mentioned at the top of this page - is also several days late for her period. Hopefully it'll come soon but if not then I'm really going to panic.

This isn't just in my head. The fact that there are others - my girlfriend, you guys, your partners - also going through this just confirms that. What the **** happened to the original posters? What's going to happen to us? Are they dead(?) Am I dying?

If I am actually infected with this - this, something - and it's as contagious as it seems to be (EVERYONE around me seems to be getting sick right now. EVERYONE) then, ****, I truly don't think I want to live anymore. If I've single-handily done to this to my girlfriend. If she's not going to be able to live her life / have children because of this.

I created a website (.com after my username) because I'm SURE this is a serious issue and it needs attention but I'm so aosidjaklsjdtired I can't even focus on the coding. What is happening to me(?) What is happening to us(?) How do I make this stop(?)

Can anyone also confirm just how contagious this actually is, please? I've already stopped sharing food / drinks / kissing / hugging family / friends etc but do I actually need to isolate myself completely?

This is ruining my life. My life is actually over.
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replied December 17th, 2012
Experienced User
@hivlikevirus

You seem to be experiencing most of the symptoms I was going thru about 7 months ago.. things have gotten a lot better for me.. because life used to be hell and all the symptoms were driving me crazy.. like the pins and needles is the worst feeling in the world, like you feel something bad has taken over your body. And light headed ness and lost was difficult at work.. but I'm not getting a lot of thow symptoms now.. it's crazy how they leave and then others thow up and then it's like a cycle when they all come back.. Right now I'm dealing with sensitive joints, throat thing, leg muscle aches,follucullitis or little red bumps on skin that itch then dry and leave dark spots on skin, also lower left stomach cramp.. my left foot is get hot flashes it's so weird and scary.. my girlfriend has missed her period for 3 months now.. and also has blood in urine. Which doctors diagnosed her with a bladder infection.. I'm still scared I don't know what's going on.. but me and her both treated negative for hiv after 3 months.. and then I tested again at 7 month's and still negative.. please try testing for MRSA or Mycoplasma.. that's what I'm trying to teat for.. also teat for H pylori some of us treated positive for that.. good luck my friend and thanks for sharing your story..
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replied December 17th, 2012
Experienced User
The hiv like virus we talking about is htlv. I had all your symptoms if you go back to my posts. The werst thing with this virus is there is no conclusive window period and test to rule this out. Many people in this forum including my self have tested negative for htlv, but still keep worrying coz all our symptoms what we experience match to htlv. Its all time will tell what we have.
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replied December 17th, 2012
Experienced User
The hiv like virus we talking about is htlv. I had all your symptoms if you go back to my posts. The werst thing with this virus is there is no conclusive window period and test to rule this out. Many people in this forum including my self have tested negative for htlv, but still keep worrying coz all our symptoms what we experience match to htlv. Its all time will tell what we have.
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Users who thank adviseme for this post: TonyDewitt 

replied December 17th, 2012
Experienced User
Hi

hivlikevirus

I exactly have all of your symptoms and perhaps some more. Although for me it started a couple of weeks after it all.

What shocked me that I also have a kidneybeansized node below my jaw high on the neck. I also have swollen lymphnodes in armpit groin and neck.

Tested negative after 3 months and I dont feel like I have infected any others.
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replied December 17th, 2012
Experienced User
My story and testing history:

Broken condom where the girl was a high risk and she tested negative the day after
Protected sex with other girl
Unprotected oral sex

Symptoms:
Fever feeling
Rash on face
Sore throat in the beginning then it went away and recurred and lump feeling in throat
Red broken bloodvessel spots with loss of pigmentation
Red spots which got itchy than form into a dry bump spot with sometimes smaller bumps around it
Foncilittes
Joint pain and backpain
Arms legs etc are very easily ''sleeping''
SWOLLEN LYMPHNODES ONE TO THREE CM neck arm groin DONT HURT WHEN I PRESS HARD ON IT
PAIN AROUND LYMPHNODES BUT NOT THE LYMPH NODES ITSELF
Weird lump below my jaw on my neck WHICH HURTS WHEN I PRESS HARD ON IT
Other rashes
Left bowel pain where I have days where I cant walk because of the pain
Right body pain around my liver
Eyesight has gotten worse
Very weird thoughts
Bad short term memory
Floaty feeling

Tested negative for other stuff as well
Normal bloods
Tested negative hiv duo up to 3 months

homeopath tested me and said I have a mycoplasma after a couple of tests.
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replied December 17th, 2012
Extremely eHealthy
@hivlikevirus,

I agree with AdviseMe - all of the symptoms you listed have been experienced by me & my girlfriends. Like you, I also created web pages (HTLVhelp dot com) and the HTLVhelp face book page - feel free to check them out.

As AdviseMe said, you can test as much as you want. Personally I spent ten thousand dollars at two different doctors (one a disease specialist and the other a cancer doctor). Once you are past the golden three month window for the HIV antibody test, do not test for HIV anymore - many people did, and it was always negative, so that's a waste of time and money. I know that it's hard to get HIV out of your mind, and also at the same time realize that we are all part of a new epidemic of a virus that was discovered a few years before HIV, called HTLV.

I've been sick with this since early November, 13 months ago. I know exactly who I got this from, and frankly, I should have known better, but I was upset about things in life, so I had unsafe sex with someone who is a complete dirt bag. Everyday I thank God that it's not HIV, and everyday I curse the medical community for hiding HTLV from the public. AdviseMe also knows who he got it from, and we are both absolutely convinced that it's HTLV, the symptoms are too similar for it to be something else. Other people in the forum are trying to prove other diseases, and I appreciate their efforts because our combined efforts at testing, diagnosis, and treatment are more than the sum of the parts. However, I know that we all have HTLV, but like everyone else, I can't absolutely prove this. I am focused on treatments, both herbal and medical, and of course the ultimate goal of curing this disease for all of us.

Two people on this forum are the rock stars, DFrank and Hope, the first because he's been sick with this for years and is apparently surviving and doing okay, the second because he's going to have the Hyperthermia treatment done to see if this cures / lessens the disease.

More importantly, other groups like us have existed before in the last decade, they wrote into TheBody site that they were dying one by one of non-Hodgkins lymphoma. As much as I'd like to say that our current suffering / pain / symptoms would be the worst of this disease, we really have to think about the possibility of being paralyzed with HAM (like Derrick on the HTLVhelp face book page) or dead from ATL in as little as 7 years (I've had email contact with Alberto from Italy who is in the early stages of Leukemia from HTLV, and also a lady on the HTLVhelp face book page).

The main points:

(1) The medical community does not give a crap about us; we could go to 1,000 doctors and scream and that will not make a difference.

(2) HTLV is completely ignored, not only in terms of diagnosis, but also treatment. In other words, no one tests for it, and there's no medication for it.

(3) We are exactly like the people with HIV in the early 80's; like them, we have to figure this out for ourselves, because like them, no one cares about us or this disease.

Per #3, I've outlined a few treatment options: XelJanz, Azacytidine, Hyperthermia, and DRACO. The first two would require a doctor who is a friend / relative who cares enough to want to save your life. The third requires a trip to central Russia, and the fourth requires $3 million dollars to complete research & development. Fortunately for us, we have some hope in these treatments, whereas the people who have been infected before us were simply watched as they physically deteriorated and died.

Best wishes.
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replied December 18th, 2012
****, there really are hundreds of us. Dread to think of all those without internet / knowledge of this forum that are just being dismissed daily by healthcare professionals as over-anxious / hypochondriacs, too. This is real. This is real. as,ljkdklasjdlaksjd

Don't have time to think / write as long a reply as I'd like to but just a few things (thanks for all the replies btw):

Depressedman, were you using condoms with your partner post-exposure? (I am right now, but if it doesn't make a difference...) And how long post-exposure did you test positive for h pylori?

adviseme: if I recall correctly, they screen for HTLV every time you donate blood, right? Might be a cheap / effective way for us all to test for that. Or too dangerous / irresponsible(?) Remember reading that's what they did in protest in China, too (post similar HIV-like-virus outbreak a few years back). Still don't think anything ever came of that though.

msamsamsa: do you know what happened to your other two partners (the protected and unprotected oral)? Any symptoms at all? How long ago was your exposure? Sorry if this has all been answered before, I've skimmed through most - if not all - of this thread but it's hard to keep track of who is who. If/when I start feeling a little more ...with it I'm hoping to try and copy / paste all / seperate stories to a new site / host. (The one I paid for last week *is* up and running but already ridiculously / incredibly slow. Have no idea how to resolve it. My once perfectly-functional brain really is just not working.) Also, which type - or, any further details - mycoplasma did you test positive for? What was the outcome / what did they say / are you on any medication or anything for it?

TonyDewitt: Girlfriend(s)? Do they know quite what's going on or...? Do you have a rough idea of how you transmitted it? I'm becoming more and more concerned that anything / everything I touch is becoming a tranmission hub. Not healthy. HTLV can be spread by surface / saliva / air contact, right(?) Also, the person you got it from: do you know their current condition by any chance? Do you have any links to those aforementioned non-Hodgkins lymphoma posters?

Hope none of these questions are too personal, just... so little time. Trying to understand. Thanks again guys, glad I found you.
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