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Certain HIV positive, but negative tests (Page 39)

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July 22nd, 2012
Thanks darkguy I wish you good luck, how long your risk is and is this your first HIV test? Do not worry HIV symptoms are related to allot of other things too, I hope your symptoms might be due to stress or some other miner things God bless you, I know my results are not normal, that's why lab send my result to Dr. To make on comment on that, I am hopeless, but now it's too late can not do any thing, just can only waiting to get know my punishment of my mistake.
God bless us all.
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replied July 22nd, 2012
Thanks onechanceplz,

Its my 8th HIV test. I did one stupid mistake last september. After that time, i am suffering every and all symptoms of HIV, but all tests came back negative. I am certain that I am infected by it from that bad incident. But I don't know why tests are come back negative. I am counting hours to see my result.

Thanks again.
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replied July 22nd, 2012
Extremely eHealthy
Guys,

Once again, none of us has HIV. Not because HIV isn't a real problem, not because HIV isn't contagious, not because we couldn't have gotten it doing what we did. But because we did test for HIV, repeatedly, and all of those tests were negative. We either have some variant of HTLV that won't show up on tests (especially after three years for DFrank), or it's something else. DFrank, I don't know how you've lived with this for three years, frankly I'm ready to go into a nut house - you're a better man than I am.

I'm miserable everyday with pain, all over my body, but especially in my lower back - even turning over in my sleep requires major effort. I can't walk right, and break a serious sweat even with the lightest efforts. I really hate the thought that the rest of my life will be like this (or God forbid worse). Sadly, some of the people on this forum are even sicker than me.

Best wishes.
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replied July 22nd, 2012
Experienced User
I've already been down your road of what do I have, and all the symptoms. I was really sick like you guys the first half of my second year of exposer. To the point that I was supper depressed and hopeless enough to try and end my life. I went in the hospital( not a good one). But enough to help me get back on my feet. I took their antidepressants which may have helped me mentally, but my physical symptoms never went away. I ignored the symptoms like my doc and family suggested, to no avail the pain was worse than ever . We have something, what I don't know for sure. I have a very great and understanding girlfriend that has helped me through this. The last 8 months were the worst with the painfful symptoms, but my mind was in a much better state, as I was over the " oh my god I've HIV or something and imgonna die" period. I quit taking my anti depressents 5 or 6'months ago and noticed no difference in my mental state and the physical symptoms were the same. Hence to say that depression was not causing my symptoms. All I know is I researched what could be making me have symptoms of HIV, and finally came up with candidia infection. For what ever reason it has worked for me. I felt better right away, and now after a month on the anti candidia program my body aches are subsiding. Slowly they were getting better, but still had a lot of aches and pains towards the end of work. Now that is starting to Go away. I have had my girlfriend push on my mid spine were it was hurting and oh so sensitive, and now feels normal again. Why? I will eventually find out if there is a underlying cause if I had a candidia infection, but at this phase it was more important on what I could try or do to try and make me feel better, no matter what the cause! I almost feel back to normal for the first time in over two years. So there is hope, and I want you guys to hang in there,as I think we can figure this out. I have good health insurance, so easy for me to see multiple doctors, and I will. Til eventually I get some answers. Anyway what I'm saying is I have been through what you guys are going through right now, the hopelessness the pain all of it. I am now beyond that. And it took a long time, but now I have hope. So guys please try the diet, and supplements, it is worth a shot, can't hurt, nothing to lose. I will call the doc tomorrow and discuss my negative results and ask him a few questions. Not a better man tony, just more experienced because I have been sick longer. The research you have done, and the HTlv petitions and site you set up are something I wouldn't have done. Great stuff! Hang in there and try an stay positive, I know it's hard, because when I was at my worst, I was like " easy for you to say" I wil pray for you all and keep you updated with all my info.
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replied July 22nd, 2012
Experienced User
One chance, have not had those tests yet, but will request cd4 and cd 8 counts. To make sure my immune system is strong. And will request my Lyme disease test also. Keep us xinformed of your results as Iam interested in why your tests are not good.
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replied July 22nd, 2012
Extremely eHealthy
onechanceplz,

I hear you on your concerns, we've all had your same thoughts about our lives, and our families. DFrank is right that you need to pull your head together, we've all freaked out over this from time to time, God knows I have at least one breakdown a week. One of the members of this forum contacted me and said he was thinking about suicide - I did my best to talk him out of it, and I hope that my words to him stopped him from killing himself. I hope you get the point as well - all the people with far worse diseases than us are doing their best to enjoy their lives. We need to do that too - yes, I want to beat myself up for my mistake, but doing that isn't going to help. You have a son that you're worried about, well I have TWO sons that I am worried about. I was honest with them about being sick, and they understood and certainly don't hate me. We're all in the same boat on this forum and luckily we all have each other to validate this illness and discuss testing & treatments - imagine if any of us were alone without this forum? We'd really believe that we were crazy and would be living in a much worse hell.

As far as testing goes, doctors and labs and medical authorities all disagree about HTLV testing windows. Sadowsky said HTLV antibodies might NEVER develop, so he recommends HTLV PCR testing. Zunt said anyone testing HTLV antibody positive beyond six months is "extremely rare". Blood banks use 51 days as the HTLV antibody window - what a joke. Meanwhile we're all suffering - has anyone noticed that your handwriting ability is impaired? I can't even fill out a simple form legibly.

I'm going to suggest an alternative explanation for our symptoms besides HTLV - it's controversial, but some people believe that Lyme disease can be sexually transmitted. Because it's in the same family as syphilis, some people believe that sex will transmit Lyme disease. Because our symptoms are very similar to Lyme disease, that's a possibility. Unfortunately testing for Lyme can be as tricky as testing for HTLV.

Best wishes.
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replied July 23rd, 2012
Extremely eHealthy
DFrank,

Thanks for the kudos on the my research efforts and petitions, I do appreciate your recognition! Thankfully your experiences and test results have benefited us all - knowing that you survived three years of this hell and are getting better gives the rest of us real hope. Like you, I have medical insurance, and I've racked up almost ten thousand dollars in bills in eight months.

Looks like we both mentioned Lyme at the same time, my infectious disease doctor wanted me to take pills for Lyme, but I didn't because the pills required me missing meals, and honestly food is the only thing that keeps me alive. I've read that the on-line Lyme community suggests intravenous treatment for long term Lyme disease, I'd rather try that than take pills that cause me to miss meals.

I had T-cell counts done early in my illness, and the numbers were high (around 1200), so of course the doctor declared that I had "superman t-cells", meaning no way did I have HIV - that's the good news. The potential bad news is that HTLV makes your T-cells overproduce (which could lead to T-cell leukemia), so high T-cell counts could be as bad as low T-cell counts. The test that can be performed to determine if any of these T-cells are "clonal" (i.e. non-functional cancerous copies) helps the doctor determine if you are moving towards T-cell leukemia. I realize this is scary stuff, but I'd rather have all of you know about the potential down side of having high t-cells counts instead of assuming that a high t-cell count means everything is great (like my first doctor), who at that point gave me the name of a psychiatrist, who I never saw, and never will see.

Best wishes.
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replied July 23rd, 2012
Experienced User
My girlfriend just got another tests done.. H Pylori and HIV and they both came back negative at 5 1/2 months.. So now I dont know wats wrong with us or wats giving us these syptoms...

Dfrank, im sorry I havent started the diet.. Im so depressed and stressed that im just eating unhealty and drinking everyday.. Ve gained alot of weight 20lbs . Im so tired of living this way..

Im goin to test for everything at 6 months again to finally rule out all the most known stds..
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replied July 23rd, 2012
Thanks tony & drank, my son is only 18 months he even can not talk yet, my wife is only 22 years old and I belongs to a country where HIV & HTLV not exit much, I am in uk from 9 years, my visa is finishing in march 13, in my country medical treatment is so difficult even for dezises like this we have no Dr because we do not have patient, if people came to know someone is affected for something like that they hate them, if I diagnosed for something bad like that people even my family will hate me, and my son will always be called the son of who has or had HIV or HTLV, his feature his happiness and life will be missreable because of my misstate same will be happen with my lovely and caring wife, her rest of life will be so difficult, I do not know how can I face all this.
I have oral thrush from last 5 months, first time I got it after 7 week of my risk, and now it's 4 time it's comming again, I still have rash, I am still getting eassy bruses on my skin, I have eye and spinal cod pain, I have sore legs specially when I sleep it hurts allot, I have no energy in my body, I am seriously thinking to kill my self before I get any bad news, at least my wife and my son will not get bad reference because of my mistake.
God bless you all.
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replied July 23rd, 2012
Experienced User
Ok depressed, I was thee same way, depressed and craving comfort foods, sugar,burgers fries, exctera. I was a little over weight and felt like crap. I had to decide, am I gonna continue to feel tis way or am I gonna change it! My girlfriend recommended a cleanse, and a diet change, I had already researched the candidia diet so what did I have to lose. It was very hard at first, but when I started feeling better, I was like wow this is working . It was very hard, as the stuff in your body craves the sugars and carbs. I to depressed went down the road of comfort foods, and alcohol, but now have changed..if I need a drink to take the edge off I have a good vodka and club soda( no yeast and not a lot of sugar) and that's a couple at most not ten. Soon enough you will realize that you have to take a stand on your own, cause the docs don't think your sick. There is no pill to get a quick fix. We have to do it the hard way. One chance, you need to hang in there and think of your children, trust me I have two, and my suicide attempt was horrific for as well as my family, and now I am so glad I was unsuccessful!your condition could be something simple and not devastating as your test results have shown so far, so be strong and wait for your results. If the lab shows something abnormal then your doctor will be more abt to looking in to it.
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replied July 23rd, 2012
Extremely eHealthy
onechanceplz,

I share your symptoms, and I share your suffering - no way am I going to kill myself over this illness, and neither should you! DFrank is turning the corner on this thing after THREE YEARS, seeing doctors and figuring out what makes him feel better, and if you follow the advice in this forum, you will feel better too!

It's not HIV, it's something that people have never heard of. If it was rapidly fatal or debilitating, DFrank would have been dead or in a wheelchair by now, but is he? No, he's feeling better than ever, and looking forward to being healthy. Pull yourself together, I see people like DFrank & Ustas working hard to get better, and you could follow their example and get better too.

Best wishes.
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replied July 23rd, 2012
Hello guys,

My HIV test result came back NEGATIVE again(for the 8th time). Thanks God for this. So I am ruling out HIV from my mind starting from this time. But all my tests were by elisa no pcr test. Anyway i ruled out hIV now and am researching on other possible causes including HTLV.

Good luck guys.
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replied July 23rd, 2012
Extremely eHealthy
DarkGuy,

Congrats on both your negative HIV test and ruling out HIV from your mind permanently. Not only does that give you some peace of mind regarding HIV, but also that allows you to focus on what's truly making you ill, which will allow you to heal and feel better in the long run.

Best wishes.
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replied July 23rd, 2012
hi my results come back which are not goood i hav high cd8 and t cell counts i do not know what it mean, went gum clinic and showed my cd4 and cd8 counts bu they said i am hiv negative and nothing to worry, but i have allot of symptoms with this result.

WHITE CELL COUNT 8.85 x10^9/L 3.0 - 10.0
LYMPHOCYTE IMMUNOPHENOTYPE
WHITE CELL COUNT 8.85 x10^9/L
Lymphocyte count 2.58 x10^9/L 1.2 - 3.65
Lymphocyte percentage 29.2 %
CD3 percentage 84.90 % 57.22 - 86.8
CD3(T Lymphocytes) 2.19 x10^9/L 0.87 - 2.51
CD3(T Lymphocytes) 2190 cells/uL 870 - 2510
CD4 percentage 37.10 % 29.0 - 61.0
CD4 0.96 x10^9/L 0.44 - 1.47
CD4 957 cells/uL 440 - 1470
CD8 percentage *47.70 % 15.89 - 40.37
CD8 *1.23 x10^9/L 0.29 - 1.05
CD8 *1231 cells/uL 290 - 1050
Please note change in reference range.
CD4/CD3 percentage 35.90 % 30.58 - 60.81
CD4/CD3(Helper T Lymphs) 0.93 x10^9/L 0.56 - 1.46
CD4/CD3(Helper T Lymphs) 926 cells/uL 560 - 1460
CD8/CD3 percentage *45.30 % 9.8 - 36.47
CD8/CD3(Cytotoxic T Lymph) *1.17 x10^9/L 0.25 - 0.99
Please note change in reference range.
CD8/CD3(Cytotoxic T Lymph) *1169 cells/uL 250 - 990
CD4/CD8 ratio 0.79 0.54 - 2.97
BIOCHEMISTRY
C Reactive protein 2.0 mg/L <5.0
ENDOCRINOLOGY
25 OH Vitamin D *27 nmol/L
Interpretation of results:
Deficient <25 nmol/L
Insufficient 25 - 50 nmol/L
Consider reducing dose >200 nmol/L
IMMUNOLOGY
Epstein-Barr virus screen
(Interim Report)
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replied July 23rd, 2012
hi let me explain abnormal results, as under.
CD8 percentage *47.70 % 15.89 - 40.37 (ABOVE LIMIT)
CD8 *1.23 x10^9/L 0.29 - 1.05 (ABOVE LIMIT)
CD8 *1231 cells/uL 290 - 1050 (ABOVE LIMIT)
Please note change in reference range.
CD4/CD3 percentage 35.90 % 30.58 - 60.81 (ABOVE LIMIT)
CD4/CD3(Helper T Lymphs) 0.93 x10^9/L 0.56 - 1.46 (A/L)
CD4/CD3(Helper T Lymphs) 926 cells/uL 560 - 1460 (A/L)
CD8/CD3 percentage *45.30 % 9.8 - 36.47 (ABOVE LIMIT)
CD8/CD3(Cytotoxic T Lymph) *1.17 x10^9/L 0.25 - 0.99(A/L
Please note change in reference range.
CD8/CD3(Cytotoxic T Lymph) *1169 cells/uL 250 - 990(A/L)
CD4/CD8 ratio 0.79 0.54 - 2.97 OK
BIOCHEMISTRY
C Reactive protein 2.0 mg/L <5.0 OK
ENDOCRINOLOGY
25 OH Vitamin D *27 nmol/L (LOWER LIMIT)
Interpretation of results:
Deficient <25 nmol/L
Insufficient 25 - 50 nmol/L
Consider reducing dose >200 nmol/L
STILL WAITING FOR TESTS RESULTS AS UNER
IMMUNOLOGY
1. Epstein-Barr virus screen
(Interim Report)
2. HUMAN HERPRESS VIRUS-6
I THINK THE RESULT ,MEAN I AM HTLV1/2 AFFECTED OR GOT CFS (Chronic fatigue syndrome), God knows better
but i do not know what to do next.
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replied July 23rd, 2012
Extremely eHealthy
onechanceplz,

Is it possible that your lab results are showing that your immune system is being overstimulated by HTLV? I'm not a doctor, just making an educated guess. We could all take those same tests, and probably have the same results as you, and the doctors would shrug their shoulders and tell us that we are stressed out. I'm sorry that you, me, and everyone else is going through this.

Best wishes
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replied July 23rd, 2012
Hi tony I do not know what will be end, but I see HIV doctor today they said I am HIV negative do not worry about cd4 or cd8, I ask htlv he said we do not do, I ask PCR for HIV he said no, go home and relax, you are fine, but I know I am not fine, my cd8 is too high limit is up to 950 and I have 1250 nearly, I am waiting for htlv result too, I called today st merry hospital toled them I have high cd8 count plz do htlv PCR test for me, they again refused and said they can not do PCR test if antibody test negative, and told me to ask my result on Thursday I once again asked for window period and get the same reply it's 3 month, so I am negative 7 month HIV & 29 week htlv but then y my cd8 are too high that is my question but no Dr want to listen to me, so now I m going to my Gp to send me to specialist to find out about for CFS.
Just keep me in pray I am dieing every single minute with pain, symptoms and guilt to put me and my family in this situation .
God bless us all.
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replied July 23rd, 2012
Extremely eHealthy
onechanceplz,

You have to sort this out and get yourself to a stable point - I know that's much to ask, but here's what you have to do:

(1) Stop worrying about HIV - we all tested for it multiple times - none of us have it.

(2) Focus on taking better care of yourself - try DFrank's diet, my supplements, etc. Anything that you can do to make yourself feel better is the right way to go. Frankly hyperthermia (heating the body) works wonders, so take a hot bath, jacuzzi, sauna, etc.

(3) If there's another disease causing your problem (HTLV, Lyme, etc.) only time will tell. Do your best to keep your head together.

Best wishes.
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replied July 24th, 2012
Experienced User
Tony, have you tested for Lyme, what's your story with that, I heard its hard to get a diagnoses.
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replied July 25th, 2012
Extremely eHealthy
Dfrank,

There's alot of information on the forums that says that Lyme is hard to diagnose. For me, it's the opposite, I lived in a wooded area 25 years ago, so I have Lyme antibodies. Because of this, the doctor wanted me to go on antibiotics back in November, but they were hard to take because they interfered with eating (I was ten times sicker back then so I couldn't skip meals).

Of course being that sexually transmission of Lyme is still not accepted (like HTLV), there was no way I could link my symptoms to Lyme, since my illness started after a sexual encounter on November 7th. If Lyme were treated like a possible STD, then that would explain why over a dozen people I had sex with (including two women only performed oral on me without ejaculation) are sick.

I heard that treatment is much harder, since most people aren't cured with the simple two week dose of oral antibiotics. The more successful treatment is the intravenous antibiotic, which I would rather go for, since it allows me to still eat & not skip meals.

If I drop dead from Lyme because I am worried about HTLV, that would be unfortunate. The only way for me to really know is to go to a doctor that specializes in Lyme, since most doctors are ignorant about Lyme, its testing, and its treatment (much like HTLV).

Best wishes.
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