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Certain HIV positive, but negative tests (Page 104)

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January 30th, 2014
Experienced User
So the possibility of lymphoma in my head has increased with my immuglobin results and symptoms. There are do many types.

And viral causes have been linked.

But ... When I read about htlv - it says 7 to 50 years before it is a problem, even with hiv , lymphoma is a late stage disease not early.

I am at 1.3 years. Any one found anything about rapid progression?
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replied January 31st, 2014
Extremely eHealthy
WS,

Since HTLV does not have a reliable test, no one knows how long someone has HTLV before developing lymphoma. A coworker's brother (a doctor himself) died from ATL, which is caused by HTLV, and everyone was in complete denial that HTLV was the cause, they focused on the cancer and ignored the virus causing the cancer.

At least with HIV, the death certificate will say "lymphoma caused by HIV". With HTLV, that will never happen, furthering the cover up on HTLV.

Best wishes.
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replied February 6th, 2014
Extremely eHealthy
Doctor Loughran in Hershey, PA, while still not convinced that HTLV causes LGL Leukemia, wrote the following:

The frequent reactivity of patient sera to HTLV-I/II gag protein p24 and to env protein p21e, however, suggests that a deleted or variant form of HTLV-I/II may be associated with LGL leukemia.

Article: www dot ncbi dot nlm dot nih dot gov/pubmed/8207960

See if your doctor will at least perform the P24 and P21e testing to at least partially prove that we have HTLV before it kills us all.

Best wishes.
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replied February 6th, 2014
Experienced User
Have u had any of these blood tests tony?
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replied February 6th, 2014
Extremely eHealthy
WK,

No I have not. I had an appointment with another doctor yesterday, who I warned up front that I am tired of being told that I am crazy, explained all of my horrible symptoms, and blamed everything on HTLV. He was the first doctor to say that he had previously diagnosed people with HTLV, and that my symptoms matched theirs. However, he forbade me from describing my muscle wasting as a wasting syndrome, even though I have seen my muscles shrink since I became sick. He then recommended that I see another doctor (one who treat difficult cases such as Gulf War Syndrome) and charged me $225 for the discussion. When I told him that I didn't have $225 for his consultation, he asked if I had a credit card, and when I said no, he told me to mail him a check (I dont even have a checking account). So the good news is that he is willing to discuss HTLV and recommended another doctor, but the bad news is that he doesn't want me to talk about my wasting syndrome even though it is my BIGGEST and most obvious symptom. People have noticed that I am losing muscle mass, that my pants are falling off of me, etc. I would not be surprised if people are talking about me having AIDS, between the wasting syndrome and skin disorders that I am experiencing.

Best wishes.
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replied February 13th, 2014
Tony,

In a previous post you mentioned among others Tenofovir. Did you try this?
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replied February 8th, 2014
Experienced User
Tony,

I had the same problem with wasting and lost aprox 10% of my bodyweight during couple of months after exposure. Switching to a high protein diet helped me to gain weight back and maintain. Can only suggest drink whey protein isolate shake (1 or 2 scoops of protein) within 30 min after wake up. Casein protein shake before bedtime. Eliminate sugar in any form. Eat mostly vegetables, meat, fish, eggs, nuts and seeds, little starch and fruits. Currently I feel my self very good in terms of energy, my body weight, muscle mass and fat. They are balanced like never before. What an irony, right?


PS. I have increasing pains in my knees right now. And seems nothing can do about it.
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replied February 8th, 2014
Extremely eHealthy
JB,

Thanks for the tips - the tricky issue about retroviral infections with respect to wasting is losing muscle mass versus gaining fat - personally, I've done both. So be careful when you say that you've gained the weight back, since I am heavier than I have ever been (fat), but my muscles have shrunk. This virus interferes with mitochondrial energy processing, making these huge changes in my body occur, none of them good. Your elimination of sugar goes a long way to combat yeast infections (candida), which run rampant in all of your orifices (penis, ass, and mouth), along with your intestinal tract and skin and eyes. Probiotics (e.g. yogurt) help combat candida as well. Recall that DFrank was heavily vested in anti-yeast practices, since the virus allows yeast to flourish via immuno-suppression.

Best wishes.
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replied February 8th, 2014
Extremely eHealthy
PS: Look for scaly looking reflections in your skin as a sign of candida (yeast infections) - me & one of my girlfriends have that, especially below the knee. Scared & I also have itchy collarbones.
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replied February 8th, 2014
Experienced User
Tony,

I've lost some fat and gained muscle mass. So Yes, I'm heavier then before too and my shirts and t-shirts doest fit any more. My t-shirt size was M all my life now it's L. But jeans (W size) transitioned from 32 to 30 just like yours. I think high protein diet and some sports did this transformation. I will definitely continue this program.

Regarding skin. It seems there's small herpes on my left knee. I think this is due to immuno-suppression. I have it some times on different parts of my body like arms or legs. May be two or three times a year. I take L-Lysine in high doses during these herpes out brakes.

Also I heard about Neem capsules which is very good at skin problems. I'm going to test this remedy soon to fight many small pimples on my torso and shoulders.
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replied February 10th, 2014
Extremely eHealthy
JB,

The rash on your knee might be the candida (yeast) infection I mentioned - have it looked by a dermatologist so that it can be definitively diagnosed.

Best wishes.
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replied February 8th, 2014
Hi All,

I have just found this forum and I'm relieved there are more people in the same frustrating situation (I don't mean that in a bad way) that I can talk to .
I had a moderate exposure risk over 2 years ago and have seen over 15 doctors as well as an ENT and tested for virtually every STD known including HTLV 1/2 CMIA neg post 2 years. I'll have to go through them all later. I noticed intense itching straight after and less than a week I developed a bad cold.
I have had various symptoms but the longest lasting is definitely the sore throat like something is in there but can't cough or spit it out and the itching drives me nuts.
I'm surprised I haven't been sacked at work because I'm finding it hard to keep motivated knowing I have this condition to which I'm convinced is HTLV or a variant which won't show up on any test.
Anyway I've endured the disdain of GP's and STD helplines and one thing which really pissed me off was I spoke to a B2 clinic specialist nurse of 25 years and she hadn't even heard of HTLV. I also spoke to a STD testing clinic and they had to look up on the net about it.
When I was getting blood taken for the HTLV CMIA the person taking the sample didn't even know what it was.
I'm sick of arm wrestling with doctors about getting tested and I feel like I'm losing the battle.
I plan to get a HTLV PCR soon so hopefully I can put this latest obsession to rest. First it was HIV (8 tests out to 14 months). Treponemas HBV HCV FBA etc.
All I can say is I'm sick of feeling like crap and a human pin cushion.
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Users who thank Downenout for this post: Definatelyworried 

replied February 8th, 2014
Funny thing is Dr Tan online was how I discovered HTLV (wasn't happy there was another killer virus like HIV) when 15 doctors didn't even suggest it after me incessantly asking for full STI screens. Woeful.
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replied February 9th, 2014
Experienced User
Hi TonyDewitt and Downenout,

If your description is right, and htlv is hardly to test out, can we test Reverse transcriptase firstly? Firstly HTLV is Retrovirus, we should prove Reverse transcriptase is positive or negative. is it right?
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replied February 10th, 2014
Extremely eHealthy
Feng,

For a long time I asked everyone to get Western Blot and PCR testing, and never heard back from anyone about that. Part of the Western Blot test is the testing for HTLV's individual proteins p21e and p24 (p24 is also part of HIV), mentioned in Doctor Loughran's paper about everyone dying of leukemia.

Again I have to emphasize that this virus is going to kill us, either by myelopathy, or cancer, or sepsis. In the beginning, it's hard to focus on the long term because the symptoms are so horrible, but after a while you see the big picture.

Best wishes.
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replied February 9th, 2014
Does anyone understand this? http://jcm.asm.org/content/38/11/4049.full
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replied February 10th, 2014
Hi Feng,

Sorry mate but I'm not quite up to speed with the intricacies of the RT PCR.
I know there is a real time PCR and a Reverse transcriptase PCR but I'll have to read more about it. It all seems a bit overwhelming and like you need a degree in medicine to understand it.
All I know is at this stage (post 2.5 years) I'm yet to find an answer to my problems and losing faith with modern testing. Hopefully I'll gain some closure soon because I'm really struggling with it all.
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replied February 10th, 2014
Hi Tony,

Would you agree a htlv qualitive rt-pcr test would be sensitive enough to be accurate or am I wasting my time because there is a lab that I know will do it. Is the quantitive rt-pcr a more accurate test?
Thanks
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replied February 10th, 2014
Extremely eHealthy
No, you are wasting your time. I did HTLV PCR testing, and asked everyone else to do the same. No luck.

Best wishes.
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replied February 11th, 2014
Experienced User
Hi everyone,

I've no idea how to get the HTLV Immunoblot/Westernblot testing where I live. The only option available for me is Antibody (which is negative post 1.5 years). Probably the one will be tested with the Blot if his Antibody test is positive. But once you are negative they wont do the confirmation test.

P.S. I was unable to find any lab that capable to perform HTLV PCR testing either.
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replied February 11th, 2014
Extremely eHealthy
JB,

All of the major labs do PCR testing (e.g. Quest). You'll have to get a doctor to order it, along with the Western Blot (they just don't give it to everyone).

Best,
George.
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replied February 11th, 2014
Experienced User
hi everyone,

can you know similar website like this to discuss our problems, I would like to look at it. thanks a lot.
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replied February 13th, 2014
Hi Tony,

What is the most accurate/ conclusive test available for HTLV. I know you mentioned LIA but apparently this Lab in Western Australia does 13 different tests.

Kind regards
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replied February 13th, 2014
Extremely eHealthy
D,

If your lab does 13 different tests, please list them for us.

Best wishes.
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replied February 13th, 2014
Hi again Tony,
Rang the lab again to find out what HTLV tests they do and she wouldn't tell me. She said go see a doctor but half of them don't even know and none of them care about it.
I really want to find out once and for all if it's HTLV or not.
Thanks
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replied February 13th, 2014
Experienced User
Google search, htlv.registry
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replied February 13th, 2014
Extremely eHealthy
D,

Everyone on this forum would like to find out if it's HTLV or not. I know it is, based on my symptoms. Like you said, doctors either don't know or don't care about HTLV. Take the Western Blot and tell them that you want to see each of the protein bands (p24, p21e, etc). That's a good place to start. The World Health Organization has criteria for each of these bands in determining a patient's HTLV positivity / negativity:

HTLV-I antigens include three gag proteins (p19, p24, and p53) and 1 env protein (gp46). According to the criteria proposed by the World Health Organization, reactions with both HTLV-I gp46 and more than one of the gag proteins were scored positive.

Best wishes.
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replied February 16th, 2014
Experienced User
I know about a guy in LA, he did the HTLV immunoblot and got p19 p24 reactive and then HTLV Inno-LIA which returned with env gp46 I/II, env gp46-II. His doc was unable to interpret the results as he said. I'll try to reach him and update the info.
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replied February 21st, 2014
Extremely eHealthy
World Health Organization's criteria for HTLV positivity
JB,

Based on the World Health Organization's criteria for HTLV positivity, your friend is positive for HTLV:

HTLV-I antigens include three gag proteins (p19, p24, and p53) and 1 env protein (gp46). According to the criteria proposed by the World Health Organization, reactions with both HTLV-I gp46 and more than one of the gag proteins were scored positive.
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replied February 13th, 2014
Experienced User
Good news, immunologist ruled out immune disorder and multiple myeloma .

Now back to the id dr to discuss lymphoma and other diseases.
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replied February 13th, 2014
Experienced User
Hi wyomingscared,
where do you get the news?
can you give me the website or test results? thanks a lot.
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replied February 13th, 2014
Extremely eHealthy
How were you tested MM? I ask because long term HTLV infection leads to MM.

Best wishes.
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replied February 14th, 2014
Hi All,
Just took the western blot after dealing with a rude arrogant doctor. He seemed pissed off I straight out asked for the western blot and was trying to diagnose myself and was doing the "it's all in your mind, smoking is causing your sore throat" etc. At least the lady/nurse at the blood collection centre was more helpful but she wouldn't give me the name of the associated HTLV tests. Must be a confidential thing to stop people ordering all the tests.
Well I've done my best and I can't tell you how sick I am dealing with GP's.
I'll keep you guys posted of the results probably in around 2 weeks (going back to work).
All the best to you all and a special thanks to Tony for all the info you've sent me.
Kind regards
D.
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replied February 14th, 2014
Extremely eHealthy
D,

You're very welcome and thank you for sharing your absurd experiences with medical people with us - we've all been there. No one in the medical industry wants to admit that HTLV is spreading from endemic to non-endemic populations. None of us were warned about this disease, and now we are suffering with it. Now they're concerned about people dying from Multiple Myeloma, but won't admit that it's caused by HTLV. This is the greatest inhumanity of the 21st century.

Best wishes.
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replied February 15th, 2014
Tony,

I agree and the only word I can sum it up with is "woeful".

All the best everyone.
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replied February 16th, 2014
Experienced User
Hello everyone..just checking back in.I'm still having very weird skin problems..especially around the mouth and nose and torso..for the moment....the headaches, body pains and digestive problems are low level..and taking daily probiotics appears to have helped some but i'm still nowhere near my old self. Still nothing showing on any tests. Going to pick back up with Doctors soon. Its very weird...fyi ..I've gotten fatter as opposed to smaller like some of you....
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replied February 21st, 2014
Extremely eHealthy
Goose,

Your skin problems are shared by me, especially around the nose. The wasting & gaining is hard to get your head around, because as muscles are shrinking, we're also gaining fat. The virus wastes muscles and interferes with mitochondrial energy processing, so it's possible to both waste muscle mass and gain fat at the same time. The doctor earlier this month refused to allow me to call this a wasting syndrome (but thats EXACTLY what it is), and charged me $225 for the appointment, I can't even afford to pay his bill, and for what? All he did was tell me to exercise LOL. Sometimes I don't know what to make of these doctors, and his happens to be a doctor that I have respect for.

Best wishes.
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replied February 18th, 2014
Experienced User
2yrs later I'm still dealing with these symptoms.. I actually forgot how I use to feel since these symptoms have changed my life..

UPDATE:
New Doctor did all std testing again .
Gohnerria/clymamidia
HIV
Hep abc
Syphillis
Blood work
Diabetes

ALL NEGATIVE OR NORMAL

Also today I had an a test done. They stuck a tube with camera to look at my throat and stomach. They said everything looked normal but they took a sample for a biopsy and I should get those results soon.

Also my liver and pancreas levels wer mildly high. So doctor is requesting a scan of my gallbladder and liver. Hoping it's not pancrititis

I will let you guys know the updates..


Johnpeters: can you please gives us an update? How are you and your family doing now?



Symptoms to date:
Itchy skin
Cold/hot tingles/flashes on ankles wrists face.
Throat issue
Muscles sore easy
Congested head, throat , stomach rumble,
Stool change to frequent light , dark
Penis can itch and tingle and testicLe pain
Follulittis
Weight gain
Depression
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replied February 19th, 2014
Experienced User
Hi Depressedman,

your symptoms are all same as mine. and all do all std test last month, it is all negative. actually most of us is infected by sex, though mine is oral sex with protected condom, firstly we admit we are sick, and the virus is related to sex. so we should investigate it according to sex. BTW, I don't know it is htlv or not, now htlv test doesn't prove it is htlv or not, so we should do not hang in a tree, we should thought and examine it in another aspect. thanks a lot.
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replied February 21st, 2014
Extremely eHealthy
Feng,

Everyone here is entitled to different beliefs, and everyone here knows what my belief is. If you or anyone else have other ideas and can prove them either through testing or treatment, then God bless you. Meanwhile, I'm on the path for what I believe this is. I will find a doctor who can scientifically prove that this is HTLV, and I will find a doctor who can prescribe me with tenofovir alafenamide fumarate as soon as it becomes available. While practices like exercise, diet, and sleep help, we are not doing anything to stop this virus from killing us. If we are going to survive, we must eventually take some antiviral medication.

Best wishes.
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replied February 23rd, 2014
Experienced User
Feng,

My test was just a standard immune test. - then about 8 others to test the sub antibody results
I am feeling ok overall - sore abdomen and lymph nodes.

I am starting to hope for just Cfs. But not convinced yet. New appt with id dr in 10 days
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replied February 23rd, 2014
Extremely eHealthy
WS,

Consider taking the following tests:

1. Autoneural antibody.
2. Flower cell blood smear

Best wishes.
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replied February 27th, 2014
Experienced User
Hi TonyDewitt,

how does htlv infect? do you think it is infect though oral sex, and the oral sex is protected?
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replied February 27th, 2014
Experienced User
I don't think it is a Cfs, most of us are related to sex.
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