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Certain HIV positive, but negative tests (Page 48)

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September 16th, 2012
Extremely eHealthy
Hope,

I had one CD4 test in the very beginning, and my T-cells were over 1100 (a classic HTLV sign) - that was 9 months ago. More recently I went to a cancer doctor (since HTLV can cause leukemia) and had $2,000 in blood tests done. He said everything looked in range, with a slightly elevated sedimentation rate. How long have you been sick? When were you exposed?

Best wishes.
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replied September 17th, 2012
Experienced User
3 months. TB ALSO GOT REACTIVATED
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replied September 16th, 2012
Extremely eHealthy
Dr. Holodniy,

I've read many posts where people are asking about the possibility of HIV with respect to negative or undetermined testing, especially when P24 testing is involved. At the risk of sounding flattering, your site is best place for *any* questions to get answered, so I'd like to ask a question here and now that has gotten routinely shot down on the other sites (POZ, MedHelp, etc): Why isn't HTLV ever considered as an alternative diagnosis to HIV? Since HIV & HTLV share P24, since they are both retroviruses, since they both transmitted in the same manner, since they both cause very similar symptoms, why wouldn't people testing negative for HIV antibodies and/or somewhat reactive to P24 ever be considered for HTLV? The number of people infected with HTLV is astonishing for a disease that is never mentioned (almost in the ballpark of HIV infections, with many HIV patients co-infected with HTLV), and is especially high within the IV drug user community. Why can't doctors (present company excluded I hope) talk openly about HTLV? Ironically, the only person who has given the whole picture of HTLV is Rick Sowadsky on this site, who's not even a doctor (great thanks to Rick, since without his candor, I'd never know about HTLV). So I'd like to understand from your perspective please why this is - why is HTLV swept under the rug, so to speak? And, more importantly, what can we do to change that denial, so that HTLV is considered a public health issue as much we do for HIV, Hepatitis, etc?

Thank you in advance for your compassion & thoughts.



Response from Dr. Holodniy

I have no issues with HTLV 1 and 2 testing. They are tested for in every donated unit in blood banks in the US. Clinical testing would have to be more nuanced, based on the clinical history, physical findings, and epidemiology (prevalence and incidence) in the specific community.
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replied September 17th, 2012
Experienced User
All this my recent WBC count.
some are very low, few are sloghtly higher.
Not sure what to make out of this result.


CD3 lymphocytes 60.5 - 76.9% 73.62%
CD4 counts 441 - 1372 cells/mcl 917.31 cell/mcl
CD4 lymphocytes 29 - 44.19% 49%
CD8 count 326-763 242.34 cell/mcl
CD8 lymphocytes 25.2- 42.8% 12.95%
CD4/8 ratio 0.74-2.58 3.79
Total leucocytes count 4000- 11000 cells/cu, 4343.55 cells/cu mm
Absolute Lymphocyte count 1000-4000 cells/cu, 1872.02 cells
Lymphocates% 20-45% 43.10%
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replied September 17th, 2012
Extremely eHealthy
AdviseMe,

What does the doctor say about these labs?

Best wishes.
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replied September 17th, 2012
Experienced User
There was a greek case where by a woman's HTlv has been cured? isn't it?
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replied September 17th, 2012
Experienced User
adviseme.

yuor situation is more alike those suffering in china.

I m from Hong Kong. My wbc looks something similar to yours. Altough our symtoms looks alike htlv, the WBC count doesnt match. I guess we are not htlv infected.
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replied September 17th, 2012
Experienced User
Tony my doctor dosent think that these lab reading is important, he says its just bodys reaction and dosent wants to get stuck with lymphocate counts. But my reaserch says with HTLV the cd4 cells go higher and CD8 cell are below minimum with HAM TSP infection. Maybe i am worng. Tony what is your thought?

Hope i wish this wasent HTLV, and none of catch HTLV from this one incidence of our, but else could it be if it is not HTLV. I havent got information about HIV virus in china.Chinese authority confirmed it isnt true.
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replied September 17th, 2012
Extremely eHealthy
AdviseMe,

I agree with you about the effects of HTLV infection on cell counts, it's the opposite of what HIV does to cell counts. Seeing that your CD4 / CD8 ratio is 3.79 is the opposite of what HIV does, HIV infections keep that ratio below 1.00, plus your CD4 counts are over 900, which is again the opposite of what HIV does. Since we're way past worrying about HIV as a group, we need to consider other causes. If it's not HTLV, then we really have a mystery on our hands.

Best wishes.
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replied September 17th, 2012
Extremely eHealthy
Hope,

There was a 58 year old male patient in Greece who was apparently cured of HTLV using azacytidine. Although the doctor gave the credit for the cure to azacytidine, the patient was also given a bone marrow transplant after 8 months of azacytidine treatment, so it's difficult to know if the azacytidine alone cured the HTLV, or if the bone marrow transplant was part of the curing HTLV. We won't know for sure until someone does a clinical trial of azacytidine for treating HTLV.

Best wishes.
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replied September 17th, 2012
Experienced User
In fact, is there any possibilities if we get infected by some other reare disease...such as mycoplasma fernites infection..
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replied September 17th, 2012
Extremely eHealthy
Hope,

Regarding alternative infections, anything is possible. We have already ruled out HIV with dozens of HIV tests. The only way we are going to rule out HTLV is by taking PCR and Western Blot tests, since HTLV antibody tests are not conclusive (per Sowadsky from TheBody site). We are all experiencing the same symptoms, including some classic HTLV symptoms (e.g. back and leg pain via HAM).

Best wishes.
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replied September 17th, 2012
Extremely eHealthy
Update: I got banned from MedHelp for the THIRD time, apparently even writing "thank you for your input" in response to HTLV discussions results in being banned.
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replied September 17th, 2012
Extremely eHealthy
Background

Although patients with idiopathic CD4+ T-lymphocytopenia and serious opportunistic infections have been described previously, the clinical and immunologic features of this condition have not been well defined.

Methods

We studied in detail five patients with idiopathic CD4+ T-lymphocytopenia. The studies included serologic testing, culture, and polymerase chain reaction for the human immunodeficiency virus (HIV) types 1 and 2, serologic testing for the human T-cell lymphotropic virus (HTLV) types I and II, lymphocyte phenotyping, immunoglobulin quantitation, and lymphocyte-transformation assays, as well as attempts to isolate a retroviral agent. The results were compared with those in HIV-infected persons matched for CD4+ T-cell counts and with those in normal controls. We also studied the spouses of patients and the blood donors for one patient.

Results

In these five patients, there was no evidence of either HIV or HTLV infection. All the patients had both low percentages and low counts of CD4+ T cells, with relative increases in percentages, but not counts, of CD8+ cells. Numbers of B cells and natural killer cells were generally normal. As compared with HIV-infected persons, our patients had lower percentages and counts of CD8+ cells and more lymphopenia. CD4+ counts were relatively stable over time. Instead of the high immunoglobulin levels seen in HIV infection, these patients had normal or slightly low levels of immunoglobulins. The lymphocyte-transformation response to mitogens and antigens was depressed. Results in spouses and blood donors were normal.

Conclusions

Idiopathic CD4+ T-lymphocytopenia differs from HIV infection in its immunologic characteristics and in its apparent lack of progression over time. Nothing about the immunologic or viral-culture studies performed in these patients or about their family members or blood donors suggests that a transmissible agent causes this condition.
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replied September 17th, 2012
Experienced User
Hi guys, I went to the orthopedic today about my back pain they took some x-rays and Dr. didn't see anything. I told him about some of my symptoms intermittent night sweats, severe middle back pain, lump feeling in my arm pits, and itching especially at night. He ordered a MRI for me thank god he says he wants to find out whats going on. My questions, 1. Would the x-rays have shown anything seriously wrong such as infection or cancer? 2. What if the MRI comes back negative should I rule out anything seriuos? 3. If there is something really wrong such as a spine infection or cancer mass will the MRI deffinately pick it up. I know you guys aren't drs. Just need some guidance. I will post the MRI results as soon as I get it done.

EVERYONE, is anyone experiencing abdominal issues, itching, especially at night, lump feeling in the arm pits, nightsweats, mucus in stools, different colored stools, light colored stools, lump feeling in throat, dry mouth seems worse if I carry on a conversation, random stomach pains all over, red back of throat tonsil area, these are my most current symptoms. September 25th will be 10 months post exposure.

I wish everyone the best, and don't give up we know something is wrong just keep after these drs. make them do their job. I will be praying for everyone.
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replied September 18th, 2012
Experienced User
BACKGROUND: Since 1988, all blood donations in the United States have been screened for antibodies to human T-lymphotropic virus type I (HTLV-I). However, the sensitivity of current serologic tests for the detection of HTLV type II (HTLV-II) antibodies and the diagnostic utility of direct tests for HTLV-I and -II using polymerase chain reaction (PCR) are poorly defined.

STUDY DESIGN AND METHODS: Five hundred sixty-nine HTLV-I- or -II-seropositive and 687 age- and sex-matched seronegative samples from a high-risk population at an inner-city emergency department were selected. All samples were tested with four HTLV enzyme immunoassays (EIAs), one Western blot assay and one type-specific Western blot assay, one HTLV type-specific EIA, and a research HTLV-I/II PCR kit.

RESULTS: Sensitivity of the various EIAs ranged from 95.1 to 99.5 percent, and specificity ranged from 97.2 to 99.4 percent. PCR performed in duplicate without selective retesting had lower sensitivity (85.1 %) and specificity (88.0%). However, PCR detected 20 (3.2%) HTLV-I-positive and 47 (7.5%) HTLV-II-positive samples among the 627 samples that were negative in all EIAs. The type-specific EIA and PCR assay had the highest rate of concordance in classifying samples as either HTLV-I or II, with the type-specific EIA and type-specific Western blot having the next highest rates of concordance.

CONCLUSION: In this sample set from a population at high risk for HTLV-II, screening with HTLV-I/II PCR had lower sensitivity and specificity than that with EIAs. However, 4.1 to 10.8 percent of samples were PCR positive but seronegative for HTLV-I or -II, and their true infection status remains undetermined.

What does this mean, is EIA test more sensirive than PCR or other way round?
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replied September 18th, 2012
Extremely eHealthy
AdviseMe,

The research I've done on HTLV testing revealed that a THREE tier test is needed:

(1) HTLV antibody testing.
(2) HTLV PCR testing.
(3) HTLV Western Blot testing.

According to the author, that's the only way to conclusively rule out HTLV. I know some of us have had 2 out of three of these tests, but no one has had all three (as far as I know).

Best wishes.
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replied September 19th, 2012
Experienced User
Tony, All these test together will rule out HTLV but how long after 6 months, 1 year, 2,4,year ?
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replied September 19th, 2012
Extremely eHealthy
AdviseMe,

They didn't assign a window period to any of these tests; my interpretation of this is that they are being so stringent with the (triple) testing because they acknowledge how difficult HTLV testing is.

Best wishes.
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replied September 18th, 2012
Experienced User
scared i am experiencing alot of your same symptoms!

throat thing (feels better if gargle listerine)
stomach pain
itchy body (noticed more when hot ot humid)
sensitive lymph .nodes
back of head pain (sensitive)

my girlfriend is getting very itchy skin also! and now is finding random circular dry itchy spots (mites? ring worms? parasites?) im also getting itchy spots and lower stomach im getting red marks that look as if i scratched but i dont scratch..
my girlfriend has an appt about the spots on her body, im hoping that will prove to her doctor that something is going on, maybe they can test her skin under a scope, and also check her blood or stool since our stools have changed..

my skin getts really itchy at nites and after showers.

i will post up her results, talk to you guys later...
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replied September 18th, 2012
Extremely eHealthy
Scared / D-man,

(1) Itchy skin - my girlfriend and I went through the itchy phase, it was so bad that it would wake me up in my sleep! It's not as bad nowadays, but in the beginning, my girlfriend scratched herself until she bled!

(2) Throat - phlegm and difficulty swallowing / discomfort.

(3) Abdominal issues - now gurgling and numbness, in the beginning severe pain.

(4) Nightsweats - limited to groin area (resulting in damp underwear), in the beginning sweaty legs as well.

(5) Stools - mucus & different colored stools.

(6) Eyes - red often, floaters constantly!

(7) Back pain - severe in the middle pain (daytime), dull pain in my lower back (at night).

(Cool Sebum - excessively oily skin on my face and scalp.

September 7th is 10 months post exposure for me, so we are 18 days apart on exposure, Scared.

From the online research I've done, damage to the spine by HTLV should be viewable by a MRI. Since you are lucky enough to have a doctor that wants to find out what's going on, tell him that you're worried about HTLV attacking your spinal cord, and ask him if that's something he can see with an MRI.

Best wishes.
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replied September 18th, 2012
Experienced User
Hi everyone,

I have itchy sink as well after a shower, abdominal pain, abdominal gurgles, mucus in throat, joint pain, headache, red eyes, acne problems, weak feelings at times.

Hoping the best for everyone.
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replied September 18th, 2012
Experienced User
Tony, adviseme, d-man, ustas, Casper,

I really think we might be infected with the same thing. Going back looking through some of the posts our symptoms seem pretty much the same. This is driving me completely insane we know something is wrong what the hell can it be? I'm hoping and praying this MRI will give me some answers to what's going on. My appt. is set for Monday sept. 24th at 3:30 p.m. I'll let you guys know the result as soon as I get it. I know in my heart we got infected with some kind of virus based on our symptoms. Just keep hanging in there guys any tests I get I'll post the results good luck and god bless everyone.

Tony, does HTLV affect the liver? Just asking because of the itching, abdominal, and different stool changes.
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replied September 19th, 2012
Extremely eHealthy
Scared,

I'm glad that you see the same pattern of viral infection versus symptoms in all of us - this is no picnic for any of us, we are suffering physically and psychologically.

HTLV affects every organ you can think of, since every organ interacts with T-cells. At one point my liver was so sore, I couldn't even lay on my side. I'm in much less pain these days, thank God.

Itching is the result of any viral infection, stool changes can be anything, along with abdominal problems.

If we're going to take HTLV seriously, we need to test for specific symptoms of it. MRI scans of the spine and brain can show demyelination that could be caused by HTLV. If we start taking Tofacitinib when it get approved on November 21, 2012, and that resolves our symptoms, would that prove that we have HTLV?

Best wishes.
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replied September 19th, 2012
Experienced User
HTLV cannot be ruled out
Apprantely this guideline from Labtestonline states HTLV infection cannot be ruled out any time or with any test.

What does the test result mean?
HTLV testing is usually done in a stepwise fashion and usually includes an initial test followed by confirmatory testing, depending on the results.
If initial HTLV testing is negative, then it is unlikely that the individual has an HTLV infection and the person's symptoms are likely due to another cause. Typically, no further testing is necessary.
If someone has HTLV-I or HTLV-II antibodies on both initial and confirmatory testing, then it is likely that the person has an HTLV infection. If the person also have symptoms linked to an HTLV-associated condition, then it is likely that this infection is the underlying cause.
A person with positive initial and confirmatory results but no symptoms, such as someone who has been tested because they are the mother of an affected child or the sexual partner of an affected person, or someone whose donated blood was positive and confirmatory testing is also positive, is likely to have the infection. However, in the vast majority of cases, they will never develop an illness. These people can, however, pass the infection on to other people and should take necessary precautions.
Those who have a positive initial HTLV-I/II test and a negative confirmatory test likely have a false positive and not an HTLV infection. Those with an indeterminate confirmatory test result should be retested in several weeks to determine if they have developed antibodies. If the confirmatory testing is negative or still indeterminate, then it is unlikely that a person has an HTLV infection.
A positive HTLV-I/II molecular test indicates that the person tested has an HTLV-I or HTLV-II infection. If the molecular result is negative, then the person is less likely to be infected, but it cannot be ruled out as the amount of virus in the blood may have been too low to detect at the time of the test.
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replied September 19th, 2012
Experienced User
Dear advice me,

The main concern is that your blood work doesnt match htlv infection. Your WBC should go up instead of going down.
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replied September 19th, 2012
Experienced User
Hope, my CD4 is 915 slightly higher but still in range, however cd8 240 is very low. What was your cd8 count and cd4/cd8 ratio? HTLV infects White blood lymphocates.

Tony what was your cd4/ cd8 rato and Cd8 count?
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replied September 19th, 2012
Extremely eHealthy
It was a while ago, but I recall that my count was over 1100 and the ration was over 1.0; with HIV, the count is low and the ration is less than 1. Of course, that was 9 months ago, I don't know what the numbers are now.

Best wishes.
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replied September 19th, 2012
Experienced User
Scared, Tony, Adviseme, D-Man, Ustas,

gyus i believe what Scared said , we have exactly the same thing , i'm just started to get depressed & lose hope of finding what we are suffering from "it have been almost a year for me" and still no cure for what we all suffering from,
i will visit my doctor (ENT) on 26 of Sep , i will ask Him a full tests for everything.again..

IDK what to do guys & i start to lose hope ,
please guys all hang in there , we gave each other strenth throught thin , we are supporting each other all the time..
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replied September 19th, 2012
Extremely eHealthy
Casper,

I agree that we all have the same thing too, and yes, for me it will be a year on November 7th. If your doctor is willing to go the mat on HTLV testing, ask for the PCR & Western Blot tests for HTLV.

Best wishes.
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replied September 19th, 2012
Experienced User
casper , scared , tony , ustas

i was so itchy last nite i couldnt fall asleep.. most itchyness in my groin and in my butt. i feel so dirty these days, butt why only itchy in moist areas like the groin and butt? seems like a case of "Overgrowth of Fungus" (candida) or "parasites" or worms or mites of some sort.. please look into those symtoms and they match ours..

i really starting to think that its "not" a virus, becuase our symtoms never leave and they have stayed the same, wouldnt a virus atleast leave or be asleep for a while? i honestly feel like its some bacteria that has got in us and is probably in our stomach giving us these illnesses and symtoms, becuase we did test positive for H.Pylori so there could be other things we havent tested for,

all i know is that if i keep my nose clear, and when i empty my bladder, i feel alot better! like im ejecting garbage out thats making me sick, so if i feel better when i clear my mucus and bladder (good poop) dont you think its sonthing in my digestive tracts?

my Gf is at her appt right now, il let you guys know what her doctors say, shes been getting spots on her arm, ive never had ring worm but they look like raised circular bumps so i think its worms or some kind of bug!


also i never told you guys but i had.a bald soot after my incident and now its going away slowly! Ringworms? syphillis? thats the only two i know that give you bald spots, i get myfimal sypillis resuts in friday, WORMS GUYS PLEASES RESEARCH IT MIGHT BE IT,

Thanks for reading DEpRESSEDMan and very itchy these days, feels like bugs,insects crawling under my skin
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replied September 19th, 2012
Extremely eHealthy
My girlfriend got the same raised bumps, I really think that everything we are going through is result of a suppressed immune system from HTLV:

1. Candida / yeast infections of:
a. mouth
b. intestines
c. skin.
2. Back pain
!**@!
4. Raised skin bumps (staph infections).
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replied September 19th, 2012
Experienced User
All, please perform ur white blood count. Cd4 cd8 count should tell what way our body is moving due to infections.
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