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Certain HIV positive, but negative tests (Page 59)

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January 1st, 2013
Experienced User
Amen brother.
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replied January 1st, 2013
Experienced User
U too man and the rest as well. My first day of new year was awful. Had a temperature of 38 degrees and have a nasty cough, which I probably caught from someone. At least I hope thats the case, but since a friend of mine had it when I saw her I think that has to be it. Been in bed for most of the day now. When I lay in bed the acid reflux is very annoying, couldnt sleep last night, as it was worse than ever before. Tried eating yoghurts etc, but so far nothing. Just heard my father has the same issue since today, so I think its really from the friend who had the cough since my father has it now as well one day after me.
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replied January 2nd, 2013
Experienced User
Depressedman

The doctor requested the Mycoplasma IGG and IGM antibody test. It did not specify which mycoplasma.
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replied January 2nd, 2013
Experienced User
fever of almost 40 now
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replied January 2nd, 2013
Experienced User
Such a shame, doctors dont want to help me any further in this country though i have 100% text book symptoms of HTLV.
Reply from my Doctor below.
hi Jack. i just checked and had a discussion today with the director of the viral ref laboratory and he reviewed your two previous tests. they are unequivocally negative. the screening tests is the elisa for htlv1 and htlv 2. he has reviewed your results and says his test is state of the art and does not recommend and will not do further tests. ie he uses the murex as the second test not the lia
anyway, you have a negative test and do not have htlv1 and i can get no further testing on this for you.
regards.
dr jack lambert
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Users who thank adviseme for this post: TonyDewitt 

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replied January 8th, 2013
Extremely eHealthy
AdviseMe,

I appreciate your frustration with the medical community - we all could have symptoms of HTLV, and we all would be told by doctors that we don't have HTLV. The bottom line is that the testing for HTLV does is NOT conclusive. The current HTLV tests aren't looking for the right proteins, antibodies, etc. When the New York blood supply performed a test for the TAX protein of HTLV, they found ten percent of the donors had it! TAX is a protein only specific to HTLV, so why hasn't a TAX test been deployed? The answer is that the medical community STILL is NOT taking HTLV seriously. They believe that if they ignore it, it will go away. So far, they're wrong, with more than 25 million people infected, and countless more also infected, this disease is NOT going away. It will eventually overshadow HIV both in terms of the number of people infected, and the number of deaths. Imagine how many people have ALREADY died from HTLV, who had their deaths written off as some non-HTLV cause such as "sepsis" - this exactly what happened to Doctor Bob, God bless him. How ironic is that, to be a infectious disease doctor, and die from HTLV, and have people still to this day be in the dark about HTLV's role in your death? His life partner, Doctor Steve, is also a doctor, and doesn't even have the satisfaction of knowing what killed Doctor Bob. How insane is this world? How do we change this?

We need to be a voice, not only for those people who have died, but also those people who are still alive, but are heading towards being crippled, leukemic, and dead. If we don't make enough noise about this, we will end up the same way - forgotten and dead.

Best wishes.
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replied January 2nd, 2013
Experienced User
Do you guys think I should get my bloodtested during my fever? 40 degrees is not yet dangerous for a day. But maybe it gives some information.
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replied January 2nd, 2013
Experienced User
Temperature back to normal luckily Smile
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replied January 2nd, 2013
Extremely eHealthy
M,

High temperatures kills germs, especially HTLV:

1. Alberto from Italy had a decrease in symptoms after a sever fever.

2. Hope is going for hyperthermia treatments in Russia.

3. I've advised AdviseMe to take hot baths, keep warm, etc.

If you have a fever, you should thank God. We are more likely to be suffering with lower body temperatures, which results in more viruses and bacteria multiplying.

Best wishes.
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replied January 2nd, 2013
Experienced User
Hi Tony

Yes Im curious what will happen after this. I think it was just a cold virus. However, even though fever is a good thing, I was still kinda worried since it was increasing really fast and I know that 42.7 is deadly.

I will let you guys know my progress.

Thanks all for making a part of this thread, it really helps a lot.

Thanks
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Users who thank msamsamsa for this post: TonyDewitt 

replied January 5th, 2013
Experienced User
Ustas have you started your meds?? If so have you noticed a change?
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replied January 6th, 2013
Extremely eHealthy
Here's the page from ArupConsult dot Com regarding HTLV testing:

Indications for Testing
Clinical presentation of adult T-cell leukemia/lymphoma (ATLL) or HTLV-I associated myelopathy (HAM) in patient with risk factors (eg, IV drug use, multiple sex partners, residence in endemic area) or undiagnosed myopathy or myelopathy
ATLL subtypes and diagnostic criteria
Laboratory Testing
Required evaluation for ATLL (according to Shimoyama criteria, 1991)
Peripheral blood smear - ATLL cells present
HTLV-I testing
HTLV-I antibody testing
HTLV-I and -II antibodies by EIA/Western blot is initial test
HTLV-II antibodies significantly cross-react to HTLV-I antigens
Populations such as parenteral drug abusers infected with HTLV-II may test positive for HTLV-I antibodies due to antibody cross-reactivity
Asymptomatic patients with HTLV-I antibodies
May be infected and should not donate blood
May not have ATLL or tropical spastic paraparesis (TSP) and may not develop ATLL, HAM, or TSP
Proviral loads correlate with infectivity
HTLV-I, II PCR - use to resolve untypable or indeterminate HTLV Western blot results when there is a strong suspicion of HTLV infection
CSF studies
Protein - increased
Cell differential - lymphocytic pleocytosis
HTLV antibodies - positive
Oligoclonal bands - positive
Bone marrow exam - generally not required
Histology
If diagnosis not obtained by above, perform lesion biopsy (if present)
Immunophenotyping
Minimum testing should include CD3, CD4, CD7, CD8, and CD25
Most ATLL cells lack CD7, CD52 with diminished CD3
CD4+ T-cells express CD2, CD5, CD25, CD45RO, CD29
CD7 and CD26 negative and CD3 expression diminished
Imaging Studies
CT - recommend neck, thorax, abdomen, and pelvis to exclude extranodal disease
Upper gastrointestinal endoscopy
Central nervous system evaluation by CT/MRI if neurologic signs evident
Prognosis
Poor prognosis risk factors
Serum LD elevated
Serum calcium elevated
Age 40
Three or more lesions
Additional - thrombocytopenia, eosinophilia, high IL5, p53 or p16 deletion
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replied January 8th, 2013
Extremely eHealthy
Wikipedia posting regarding HTLV:

HTLV infection in the United States appears to be rare. Although little serologic data exist, prevalence of infection is thought to be highest among blacks living in the Southeast. A prevalence rate of 30% has been found among black intravenous drug abusers in New Jersey, and a rate of 49% has been found in a similar group in New Orleans. It is possible that prevalence of infection is increasing in this risk group. Studies of HTLV antibody indicate that the virus is endemic in southern Japan, in the Caribbean, South America, and in Africa.

Best wishes.
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replied January 8th, 2013
Extremely eHealthy
Here's the abstract from a paper titled "Reexamination of human T cell lymphotropic virus prevalence", releaseed in 1997, which is 15 years ago.

In the United States, blood donors are being
screened for infection with human T cell lymphotropic viruses I and II (HTLV-IyII) by serologic means, which detect antibodies to the structural proteins of these viruses. Because patients with mycosis fungoides (MF) usually do not have such antibodies even though their cells harbor HTLV-I Tax and/or pol proviral sequences, it was questioned whether the prevalence of HTLV infection among healthy blood donors may also be underestimated by current means of testing. To examine
this possibility, a study on specimens of relatives of mycosis fungoides patients (MFR) was begun. In addition, to collect data more expeditiously, a cohort of former injection drug users (IDUs) was tested by routine serologic methods, as well as by PCRySouthern blot analysis for Tax, pol, and gag proviral sequences and Western blot analysis for antibodies to the Tax gene product. To date, 6y8 MFRs and 42y81 (51.8%) of HIV-negative IDUs proved to be positive for HTLV, whereas routine serology identified none of the MFR and only 18/81 (22.2%) of the IDUs. Among the latter test subjects, the incidence of HTLV-I also proved to be 10 times higher than expected. Therefore, it is likely that among healthy blood donors infection with HTLV-IyII is more prevalent than is currently assumed. Since Tax is the transforming sequence of HTLV-IyII, testing for Tax sequences and antibodies to its gene product may be desirable in blood transfusion and tissue donor facilities.

If the Tax antigen had been included in such
serologic tests, 23 of 81 (28.4%) would have been considered positive. However, the largest number of infected individuals, 39/81 or 48.2% was detected with the use of the primersy probes for HTLV Tax in PCR/Southern blot analysis of PBMC lysates. Therefore, like patients with MF, a significant number of IDUs also harbor defective or variant rather than complete proviral sequences, at least as detected by currently available methods.
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replied January 11th, 2013
Experienced User
What else could it be?
Hello- thank you for this post. I engaged in insertive oral. And thought I was fine at first, then convinced myself I had HIV but then received multiple negative antibody tests after 12 weeks and negative dna test. But crazy symptoms.

My dr thinks it is just anxiety but - I know it is not

My list
Lupus
Addison's
Leukaemia
Lymphoma
Htlv
Hiv- negative at 12 weeks
Ebv - past infection , unknown
CMV-negative
Hep a-c - negative
Syphillis - negative
GC - negative
Chlaymedia - negative
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replied January 11th, 2013
Extremely eHealthy
W,

When you listed Lupus and Addison's, does that mean you've been tested for those?

Best wishes.
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replied January 11th, 2013
Experienced User
Try getting tested for "Mycoplasma" and "Mrsa" and "LGV"

What are your symptoms?
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replied January 11th, 2013
Experienced User
I have not been tested yet... Have to convince my dr that I have a problem. I think she thinks it is stress. Thank you for the suggestions. I will see if dr will do so.

Symptoms:
Eye pain
Fatigue
Malaise headache
Testicle pain
Chest pain
Rapid heart
Difficulty breathing
Joint pain
Muscle aches
Loss of appetite
Erectile dysfunction
Tingles
Anxiety
Difficulty sleeping
Night sweats
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replied January 11th, 2013
Extremely eHealthy
W,

Yes, doctors assume stress when they can't figure out what's wrong. I've been sick at different times with EBV, JCV, HHV8, Parvo, and HTLV, and the doctors were only able to diagnose EBV. The other times they were useless in determining what's wrong.

Best wishes.
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replied January 11th, 2013
Experienced User
Thank you tony - do you know anything about hiv? Most forum/ dr's say I am ok after 3 month test -

I just wish dr's would do the darn tests - so I can know what to do next.
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replied January 11th, 2013
Extremely eHealthy
W,

You're welcome, but please realize that HIV is not the only potential health problem that you can have. Yes, the three month HIV test is conclusive, but other viruses have longer window periods (Hepatitis), and some have unknown window periods (HTLV).

Best wishes.
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replied January 12th, 2013
Experienced User
Does anyone know of a good place to learn about htlv? After the initial infection - do people go back to normal for awhile? Or do they always have the fatigue/ symptoms? I read that only 1/20 actually have symptoms. Anyway - trying to learn what to do next and if I have there is a chance of normalcy again.
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replied January 13th, 2013
Someone just posted this over on hivlikevirus;

"I have this disease and I strongly believe it is the result of either HSV-1 or HSV-2 from reading up in the nearly 9 months I have been afflicted. Very few diseases cause peripheral neuropathy and nerve damage simultaneously with enduring rashes (transient viral rashes are extremely common), conjunctivitis and eye-swelling, oral ulcers and irrepressible sore throat, etc.

95% of all people contract the poliovirus without so much as a sniffle, but of the 5% who acquire symptoms, 1% or more will die or become crippled. This is the nature of viruses. In a world of almost 7 billion inhabitants, we are the 1% of herpesvirus sufferers who cannot fight this disease off."

Would / could explain a lot - especially considering most of our 'low risk' encounters. Have any of you considered / tested for it at all (whether negative or not)?

PS. Got my 12 week HIV tests back yesterday. Negative. Thank God...
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