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Certain HIV positive, but negative tests (Page 50)

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September 22nd, 2012
Experienced User
Tony, Ustas, Scared, Adviseme,

It seems I'm in deep trouble. But the more time passes the more I think this is not HIV. I had three HIV Combo tests @ months 1, 2 and 3. And HIV-1 PCR RNA Viral Load test @ month 3. All came negative. It's been almost 4 months from exposure I live in fear. And now I understand this is probably something else. I have bunch of symptoms, most of them just like yours: conjunctivitis, tonsillitis, swollen lymph nodes under my jaw, itchy elbows and knees, night sweats and some arthritis feeling in the knees, and now the new one - acid in my mouth. My CD4 is very low. I don't know how to handle all this. And the fact that medical treatment in my country is poor even worsen the situation. I'm trying to gather everything in one piece and start to move in the right direction away from this chaos. I think I need to order HTLV-1/2 antibodies test. But since only 4 months passed from the exposure it will be less informative I guess. Tony, what do you think?
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replied September 22nd, 2012
Hello Everybody,

How are you these days? That worst day, sep 26,(My exposure date)is coming. the worst day in my life. Guys still am suffering mouth problems. The hairy like white thing is still persist on my tongue. I couldn't scrap it. I do research online and i found out the information about oral hairy leukoplakia.

I related my case with this. You can see the symptoms and the cause of it. Probably this might be helpful. The treatment is using antiviral med i.e acyclovir. I will start this med by next week.

I am 100% sure by one thing, all of us have viral infection, nothing else. I did wbc count two times. In february 3.4, in june 2.8. Now I did the 3rd test and the result will be available on monday. I will et you know the result.

Guys i want to do cd4, cd8 counts. But my doctors are not voluntary to do that. Guys can you tell me how to calculate cd4 and cd8 count from wbc count?

Keep handing on our researches guys. God bless us!.

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Users who thank darkguy for this post: TonyDewitt 

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replied September 22nd, 2012
Extremely eHealthy
Jason,

Clearly you don't have HIV, since you tested negative through three months. You are sick like the rest of us, and none of us have HIV (since we also tested negative past three months) and have been suffering for a year or more.

HTLV testing is nothing short of insane - the antibody test is not conclusive. The latest research indicates that if you want to be fully tested for HTLV, you should take the antibody test & the PCR test & the Western Blot test. I know that's much to ask, but if we're going to get a handle on this illness individually or as a group, it's what we need to do. The last time I was in touch with DFrank, he said that he would get a PCR test on his next doctor's appointment. Since he is coming up on three years sick, he's a good indicator of what's going on with this illness.

Best wishes.
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replied September 23rd, 2012
Experienced User
Tony,

These tests do not necessarily have to be performed at the same time right? Does the sequence matter?
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replied September 23rd, 2012
Extremely eHealthy
No, the sequence does not matter, and they don't have to be done at the same time. However, you should wait until the six month point to have the testing done, especially the AB & WB tests, since doctors make a big deal about "six month window".

Best wishes.
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replied September 23rd, 2012
Hello Everyone,

Who is administering this forum? Who removed my post here? I posted my point Yesterday(i.e april 22)that I got from my online research. But it is removed by someone. Really bad habit.

Tony, really i want to know who did that.

Guys, I think we are researching to find out the causes that we are suffering from. But some people are doing something stupid, i.e. removing others' post here.
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replied September 23rd, 2012
Extremely eHealthy
DarkGuy,

I've had posts removed in the past, two causes could be:

1. You put a link in your post - don't do that.
2. Someone who disagrees with you complained about your posts (I've had two different people make trouble for me like that).

Best wishes.
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replied September 23rd, 2012
Tony,

thanks a lot dear. I added a link on my post, so that is why it is removed. I got the reason now. Thanks again.
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replied September 23rd, 2012
Experienced User
Hi guys,

Hope you are all feeling great.

Any post that were removed, they were done so by Adminstrators for some form of violations.

If you've done a HIV test at three months, you can bet that the test at six months will be the same as the three months. Rejoice my friend, you don't have HIV. Go party my friend.

Having lots of small bumps on my face that takes a long time to go away.don't like to see them.
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replied September 24th, 2012
Extremely eHealthy
Ustas,

Thanks for your well wishes! I hope you are feeling great as well. We are all way past the three month window period for HIV, so none of us have HIV thank God. As sick as I might feel, I am still grateful that it is not HIV - it certainly could have been, I screwed up royally. If it was HIV, I would not be one of those lucky people who doesn't progress to AIDS, I would have been dead as a doornail.

Regarding the bumps on your face, I suggest the following:

(1) Eat yogurt daily (I have a cup for breakfast); this fights yeast infections that can manifest as skin problems.

(2) Use shampoo such as Head & Shoulders - it contains pyrithione zinc, which prevents seborrhic dermatitis (most likely the cause of your facial bumps). Make sure you get some on your face when you are shampooing.

(3) Take curcumin tablets - this is the spice tumeric in tablet form, I am currently taking 4,000mg daily, but can go up to 12,000mg daily if needed. Curcumin interferes with the lifecycle of HTLV by affecting NF-kB pathways. Frankly when I miss a dose, I feel miserable; Curcumin is the most potent of all the homeopathic treatments for HTLV.

Best wishes.
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replied September 25th, 2012
Experienced User
Tony,

Did you have any idea regarding the treatment of AZT +VPA. What do you think?
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replied September 25th, 2012
Extremely eHealthy
Hope,

The problem with most drugs is that they are not approved, or only approved for limited conditions, such as VPA & AZT. The reason that Tofacitinib will be a block buster is because it is approved for arthritis, colitis, and psoriasis. Not only would it be easy for a patient to claim to have any of these conditions, but most HTLV infections do cause they conditions anyway, so it's a winning situation for anyone seeking Tofacitinib as a HTLV treatment. On November 21, 2012, go to your doctor and say "I have arthritis", and you can Tofacitinib for your HTLV treatment.

Best wishes.
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replied September 25th, 2012
Experienced User
Thanks Tony.

My doc may be able to prescribe VPA + AZT to me for trial.
Which one do you think is a better choice?

(Tofacibnib will introduce immunce suppression, isn't it?MY WBC is low currently. I am abit reluctant of that)

ANOTHER QUESTION Is, why not you have a PCR test on htlv?
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replied September 25th, 2012
Extremely eHealthy
Hope,

Before going on ANY drug therapy, you need to find out what the benefits (good part), and side effects (bad part) of the drug(s) that you're taking will be, so you can make an informed decision. Also, what do you expect to get out of taking this medication?

For HTLV sufferers, they would want a reduction / elimination of symptoms, especially with respect to leg & back problems (HAM). Also, HTLV sufferers need to take anti-HTLV medications to prevent death by ATL, a rapidly fatal leukemia, since waiting for the leukemia to arrive is too late.

If you refer to the HTLVhelp page on face book, you will see there that two other drugs were researched and have potent effects against HTLV: BMS-345541 and Purvalanol-A. Why don't you ask your doctor about taking these? Or at least compare and contrast these to what you were thinking of taking?

Best wishes.
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replied September 25th, 2012
Experienced User
Dear Tony,

Thanks for our info.
My doctor is considering a general approach for hiv-like virus.

My back and leg is definitly having problem. however my immune is greatly suppresed as well. So I am considering an early approach to kill the virus.

The big problem is before getting proofed for a specific infection, the doctor is reluctant to put a very specific therapy on me. But I have a feeling that I really can't wait.
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replied September 25th, 2012
Extremely eHealthy
Hope,

Unnfortunately, HIV drugs don't seem to work on HTLV. However, research papers show that Tafocitinib, BMS-345541 and Purvalanol-A, and Azacytidine are all active against HTLV. Again, any negative side effects associated with each drug must considered versus positive effects. For example, Azacytidine cured a patient in Greece with HTLV in 8 months, but the drug is very hard to tolerate. However, I would personally trade 8 months of being miserable for a lifetime of being free of HTLV.

Best wishes.
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replied September 25th, 2012
Experienced User
Thanks again tony.

As for Azacytidine, my main concern is its cost. I have heard that this is extremly expensive. Is this the case?

Second, the hiv-like therapy approach, We are thinking of the valproic acid + AZT approach. Altough not yet proven on human, Looking at it results in baccoon, it should produce some good result close to using Azacytidine?
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replied September 25th, 2012
Extremely eHealthy
Hope,

All drugs are expensive, including ones for HIV. Eight months of Azacytidine could cost $56,000. Tofacitinib could cost more than $25,000 per year. Again, have you considered the side effects of the drugs that you want to take?

Best wishes.
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replied September 25th, 2012
Experienced User
Why AZT Hope?

This is very old HIV medication with some serious side effects. I know HIV positive people (who can not afford brands) buy quality HIV generics online. They are 5 - 8 times cheaper.

Tony,

Regarding homeopathic HTLV suppressors other than Curcumin, are they effective?
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replied September 25th, 2012
Extremely eHealthy
Jason,

Yes, I've been feeling much better since taking curcumin - I've been taking 4,000mg of it each day, half in the morning, half at night. Since curcumin interferes with the HTLV lifecycle (NF-Kb pathway). Try it, you will definitely feel better.

Also, even though AZT is a very old medication with serious side effects, it's the first medication used in situations where an effective treatment doesn't exist, as was the case in the early days of cancer, HIV and now HTLV.

Best wishes.
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replied September 25th, 2012
Experienced User
Thanks Tony!

Have already ordered Curcumin. I'm thinking regarding Fucoidan and Green Tea Extract tablets mentioned in previous posts.
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replied September 25th, 2012
Extremely eHealthy
Hope,

Here's a few articles that deal with AZT and / or HDAC inhibitors:

Medical article title: HTLV-I and AZT - die another day

In a retrospective analysis, they demonstrate that there was a perfect parallel between the p53 status and the response to AZT treatment: all patients carrying a wt-p53 gene responded to AZT and went into partial or complete remission. By contrast, AZT had no effect in ATLL patients carrying a mutated p53 sequence.

It is estimated that several thousand ATLL patients pass away each year. Until this work, it was unclear why some AZT-treated patients enter remission while others die. This very nice study provides for the first time a rationale for treating or not treating HTLV-I ATLL patients with AZT. Patients with a mutated p53 gene might therefore be treated with alternative drugs, such as arsenic trioxide, which target both the Tax protein and the NF-b pathway.

Medical article title: Targeting HTLV-I latency in Adult T-cell Leukemia/Lymphoma

Adult T-cell leukemia/lymphoma (ATLL) is highly chemotherapy resistant. The combination of AZT and interferon (IFN) is a first line treatment option for the leukemic forms of ATLL. We and others have demonstrated AZT/IFN can effectively suppress ATLL long-term; however, these drugs fail to eradicate malignant ATLL clones. At our institution we have recently established a clinical trial for ATLL using AZT/IFN in combination with the inexpensive histone deacelytase (HDAC) inhibitor valproic acid (VPA) during the maintenance treatment phase. Histone acetylation can result in HTLV-I promoter activation and viral transcription. We hypothesized that HDAC inhibitors would re-activate latent HTLV-I in ATLL cells harboring intact provirus and help eliminate residual disease after cytoreductive treatment. We have exciting preliminary data which suggest we can achieve this. So far, we have enrolled 13 subjects with acute-type ATLL in our study. We observed a serial decrease in clonal ATLL disease followed by molecular clearance by multiplex PCR in one subject after VPA treatment. We had not seen such effect previously in long-term responders treated with AZT/IFN alone. Using fresh ATLL cells from this subject we augmented HTLV-I expression and induced cell death ex vivo after treatment with the newer HDAC inhibitor vorinostat. We are currently testing other newly available HDAC inhibitors in our pre-clinical models. The dual anti-neoplastic and viral inducing roles of HDAC inhibitors can be exploited in the treatment of ATLL. This exciting approach may help advance the cure for this disease. We will present our interim clinical trial results at the conference.

Medical article title:
AZT and interferon-alpha treatment induces a high response rate and reduces HTLV-1 proviral load and VEGF plasma levels in patients with adult T-cell leukemia from North East Iran.
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replied September 25th, 2012
Experienced User
Dear Tony,


Generally, how you feel abut taking Curcumin?

It improves you in muscle stiff?
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replied September 25th, 2012
Extremely eHealthy
Yes.
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replied September 25th, 2012
Experienced User
Tony,

I understand what you mean, I will discuss with doctor carefully with the choice of med.

Currently, One weird thing for me is my WBC count actually drops low. Lymphocyte count also lower than reference. It doesnt look like HTLV, where both index should go up? (But my symptoms are really HTLV-like)
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replied September 25th, 2012
Extremely eHealthy
Hope,

We'll never be able to figure out what is wrong with us without repeated testing. I found an article that recommends repeated testing for people who are experiencing HTLV symptoms but still test negative. Currently I am on my 4th antibody test (10.5 months post exposure), having had a PCR test (4.5 months post exposure). If any of us eventually test positive for HTLV through antibody, PCR, or Western blot testing, we won't be fixated on WBC counts anymore.

Best wishes.
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replied September 25th, 2012
Experienced User
tony,

if you can get tested for

1. mycoplasma fermentes and other stains may be considered
2. XMRV?
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replied September 25th, 2012
Extremely eHealthy
Hope,

XMRV testing is very expensive, and still controversial. I'd rather stick to HTLV testing until I see something there. If you eventually test positive for something, please let us know.

Best wishes.
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