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Certain HIV positive, but negative tests (Page 109)

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August 14th, 2014
Experienced User
Also, I just wanted to quickly update you on this. I'm taking 1 to 2 saunas daily (brief sessions, like 10-15 min each) and my symptoms are kinda getting better. I decided to walk daily, too. And I'm taking multivitamins and biotin. I ordered Fucoidan, too.

I'm trying to fight.
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replied August 14th, 2014
Extremely eHealthy
J,

If it helps you, here's a list of what I am taking. When at one point I missed my daily dose for a few days, the pain became much more severe.

1. Vitamin C (1,000mg, antiviral).
2. Pau D'Arco (antiviral).
3. Licorice root (antiviral).
4. Olive leaf (antiviral).
5. Garlic tablet (antiviral).
6. Multivitamin.

I'm also a big fan of Curcumin/Turmeric, I was taking 2,000mg daily, but ran out; I had been buy 300 dollar orders - but I ran out of money. It has been listed as having anti-HTLV efficacy, along with licorice and olive leaf.

I've read about Griffithsin, which is made from red algae, similar to fuciodan, which binds to the glycoproteins of viruses such as HIV & SARS. If anyone finds a vendor, please let me know.


I also am a big believer in the heat approach, I take a hot bath at least once a day, twice when I can, with half a cup of bleach to clean out my pores as a prophylactic against those horrible skin disorders.

Best wishes and keep fighting.
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replied August 14th, 2014
Experienced User
Thank you Tony for your kind help. Please keep in touch.

I just ordered Allithiamine from the UK. It's kinda like Prosultiamine, so I'm expecting decent results.

We need to win our battle. I refuse to see my life changing due to an incredible no-sense accident.

Best wishes to you.
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replied August 14th, 2014
Extremely eHealthy
J,

You're welcome, and yes, I also see the hypocrisy of those who just expect us to shut up and accept horrible suffering and death. This must have been what people felt like in the early 80s with HIV. Like you said, we need to win our battle, my life has been destroyed by this thing, and I want it back. Some days the desperation and isolation get so bad that I do feel like giving up, Robin Williams style. If only doctors would recognize our illness & help us, I'd have some hope.

Allithiamine is mentioned on the HTLVhelp face book page. When I tried ordering Prosultiamine, my pharmacist told me it's impossible. Does that sound like a conspiracy to you, that a possible treatment for this (in the form of a Vitamin B variant) isn't available?

Thanks, and best wishes to you as well.
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replied August 14th, 2014
Experienced User
I totally understand you. I mean, it's only been 5 months since my exposure, and my life is over already. I used to be a top worker in a top company (and formerly, an A-level student), I had everything in front of me, and now I have nothing. Lost my job, not seeing friends cuz I don't feel like seeing anybody, family wasted by what is happening.. etc..

Life has always been mean to my family, especially towards my mother. She lost her mother when she was 21 (cancer), she's diabetic since she was 4, now her son has an untreatable disease… and she has it too (my dad accidentally used my toothbrush…and now all of my family has the symptoms).

The only reason why I haven't committed suicide yet is that I love my parents. I have only them in my life now, and I can't abandon them. Also, I have rediscovered the faith in God (I had many signals in the last months, after the exposure…. I used to be very doubtful about God before everything happened. But now… I changed my mind) and I don't wanna go to Hell….. but, yes, if the disease will ever get unbearable, I will consider suicide as an opportunity.

But before that, I wanna have a diagnosis, I wanna talk to my doctor, ask her if she can give me any therapy (AZT, corticosteroids or whatever) and see how it goes. I'll try. As hard as I can.

Keep in touch,

ciao
J
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replied August 14th, 2014
Extremely eHealthy
The best you can do is ask a doctor to give you TDF (Tenofovir), or the new improved (more powerful, less side effects) formulation, TAF. TDF being packaged with other anti-retrovirals as Truvada.
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replied August 14th, 2014
Experienced User
Ok, thank you. I'll try. As I said, I'm gonna be hospitalized in September, and I'm sure I'll be able to get some therapy. Italian Health System provides good assistance. The only problem is finding the right doctors. Luckily , mine is one of the best ID in the country, and she's very caring. Let's pray and hope for the best.

Also, please don't give up with your fight and with updating your FB page. It makes us stronger. And remember that, as time passes, we're more and more (unfortunately). So, one day this disease will get recognition. I'm sure about it.
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replied August 14th, 2014
Extremely eHealthy
You're in Italy? I was in touch with guy there named Alberto, who unknowingly infected his wife & child. The last time I heard from him, he had gone full blown Mycosis Fungiodes after being infected with HTLV for 7 years. I hope that he isn't dead.

Best wishes.
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replied August 14th, 2014
Experienced User
That doesn't sound good at all…
Well, I'm pretty sure we're more than we think. Many people are not aware of their serology, that's for sure.

I'm about to go to bed. So talk to you soon.

Anyways, it's amazing how life can bring you unexpected things and how you realize how lucky you were before…

ciao
J
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replied August 14th, 2014
Extremely eHealthy
Amen to that.
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replied August 15th, 2014
Experienced User
Tony, did u get hyperthermia treatment in Russia ? How much does that cost? Do you think getting that treatment once / twice per year would consistently improve HAM symptoms ?

Thank you,

ciao
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replied August 15th, 2014
Extremely eHealthy
J,

No I didn't, but one of our forum members did, he said that it didn't help.

Best,
George.
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replied August 16th, 2014
Experienced User
I'm really looking forward to getting hospitalized in September. If doctors are unable to find significant issues, I'll talk to my doctor about this and hopefully I'll get some treatment. My life has dramatically changed. Luckily my family is supportive. But I feel punished excessively. Especially considering the way I've always behaved in my life.
Hopefully one day in Heaven we will all get some benefits after this suffering.

Btw, vitamins and sauna do really help, as well as walking every day.

Hope everyone is doing ok.
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replied August 18th, 2014
Extremely eHealthy
J,

We all feel punished excessively. I was trying to live a good life, and be careful. Like Richard Engnath said, if we knew this thing existed, we would have known to avoid it. But since it was hidden from us, it is the fault of the medical industry that we are sick because they withheld this information from us.

Best wishes.
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replied August 19th, 2014
Experienced User
You're totally right. This is gonna become the new epidemic, since nobody is able to diagnose it, nor cares bout it.

have a good day,
ciao
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replied August 19th, 2014
Experienced User
USA ppl text me .. We can start group txting and support group texting. And put all updates on this site.
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replied August 20th, 2014
Experienced User
is anyone going on with doctors to find out what's wrong ? has anyone find a doctor who's really willing to help ?
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replied August 20th, 2014
Experienced User
Just got my package with 500 capsules of Allithiamine (B1 vitamin). I'm expecting to notice improvements. Will let u know how it works. Keep fighting, best wishes.
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replied August 20th, 2014
Experienced User
first day: i know it's pretty early to talk about results, but trust me, Allithiamine worked very very good. I had one of my best days since exposure after taking this vitamin.

Tty soon guys,

ciao
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replied August 20th, 2014
Extremely eHealthy
J,

It's great to hear good news, especially for those of us who have been suffering for years. Thank you.

Best wishes.
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replied August 21st, 2014
Experienced User
Well, I would say a big "thank you" to you, TD. For your efforts and willingness to spread your knowledge. God bless you.

J
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replied August 21st, 2014
Extremely eHealthy
J,

I appreciate your thanks, it's very validating and gratifying. Imagine that not too long ago I was vilified and mocked for my beliefs.

Best wishes.
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replied August 21st, 2014
Extremely eHealthy
J,

I appreciate your thanks, it's very validating and gratifying. Imagine that not too long ago I was vilified and mocked for my beliefs.

Best wishes.
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replied August 23rd, 2014
Experienced User
Thank you, Tony.

I would also suggest everybody to try Kefir, which proved to be very effective against Htlv. I'm gonna get it today

http://www.ncbi.nlm.nih.gov/pmc/articles/P MC3064404/


Good luck everybody,

ciao
J
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replied August 27th, 2014
Extremely eHealthy
Thanks for the information.
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replied August 27th, 2014
Experienced User
you're welcome TD. I made it a couple days ago and it's helping me to feel a bit better. Kefir is the most powerful probiotic available. It diminishes CD8 activation, thus decreasing inflammation. And it reactivates CD4 in the intestine.
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replied August 27th, 2014
Extremely eHealthy
J,

Both of those advantages are important - recall that HTLV survives by hijacking the inflammation response that it causes, so reducing inflammation is important because reducing inflammation reduces the ability of HTLV to survive. This is the purpose of Janus Kinase (JAK) inhibitors recently approved for Arthritis (i.e. Xeljanz) - by interfering with the normal inflammation signaling, inflammation is turned off, thus Xeljanz has anti-HTLV efficacy. I was wondering if it was possible to completely turn off inflammation response for long period of time, such as a week, could that eradicate HTLV?

And intestinal benefit is important also, since retroviruses infect and disrupt the intestinal tract and its related lymph nodes, allowing opportunistic Candida (yeast) infections to become out of control. Such benefit should result in better stools, less mucous, less malabsorption, etc.

Best wishes.
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replied August 27th, 2014
Experienced User
TD,

I don't think that reducing inflammation would be enough to eradicate HTLV. The main problem with HTLV (similarly to what happens with HIV) are reservoirs - I'm guessing they are located in brain, intestine, and lymph nodes. You can't get rid of retroviruses without clearing reservoirs. However, reducing inflammation is crucial since it allows to decrease the incidence of symptoms. HAM/TSP is caused by inflammation and provirus in the peripheral blood. If you decrease inflammation, you make the progression of HAM much slower. This would also be beneficial with respect to ATLL. (The faster the HAM progression, the more likely the development of ATLL)


So yes, I think we gotta live with this. But empowering the immune system would be very important in prolonging survival and quality of life. We know that and we can do that by cooperating and adopting the right measures. Something is inside us. But personally I don't wanna give up.

Best wishes and keep in touch.
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replied August 23rd, 2014
Experienced User
Thank you Tony !

I would also suggest everybody to try Kefir. It proved to be very effective against Htlv.

www[DOT]ncbi[DOT]nlm[DOT]nih[DOT]gov[SLASH ]pmc[SLASH]articles[SLASH]PMC3064404

Here's how to make kefir at home:

www[dot]culturesforhealth[dot]com[slash]ke fir
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replied August 25th, 2014
Experienced User
Hi All,

So I started my 'therapy' with Allithiamine, Curcumin, Fucoidan, Q10 Enzyme, Selenium, Multivitamins. And I'm getting much better. I still feel some leg weakness sometimes, but it's improving. Allithiamine made the difference, as well as Vitamin C.

I made kefir today and i'm waiting for it to be ready to drink.

I don't know, like, everything is still unbelievable. But I'm trying to do my best to move on with my life.

ciao
J
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replied August 27th, 2014
Extremely eHealthy
Definitely I give the thumbs up to Vitamin C (antiviral), Curcumin (demethylation agent like Azacytadine), and Allithiamine (reverse transcriptase inhibition agent). If the authorities allow Prosultiamine to be imported, that would be a powerful weapon as well.

Best wishes.
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replied August 29th, 2014
Experienced User
Hi TD, Hi all,

Some good news from research:

http://www.ncbi.nlm.nih.gov/pubmed/2516348 2?dopt=Abstract&utm_medium=twitter&utm_sou rce=twitterfeed

God bless Japanese people for their efforts.
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replied August 29th, 2014
Extremely eHealthy
They have no choice - the percentage of people with HTLV is higher in Japan than anywhere in the world. At least they aren't in denial that it exists, and are doing something to battle it.

Best wishes.
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replied August 29th, 2014
Experienced User
TD,

do you think Japan has the possibility (knowledge, money…) to develop antivirals for this disease?
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replied August 29th, 2014
Extremely eHealthy
J,

They are one of the most technically advanced countries in the world, so if anyone can do it, it's them.

Best wishes.
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replied August 29th, 2014
Experienced User
Let's pray for them to get there, then.

thanks and have a good day,

ciao
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replied August 29th, 2014
Extremely eHealthy
Amen to that.
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replied August 29th, 2014
Experienced User
TD,

do you think Dolutegravir (Tivicay) might work against Htlv ? It's claimed as a very innovative antiviral in terms of Hiv suppression.
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replied August 29th, 2014
Extremely eHealthy
J,

You have to be very careful when attempting to treat HTLV with HIV medications, both in terms of efficacy and side effects (not to mention cost). All things considered equal, you would think that HIV medications would be an automatic cross treatment for HTLV. There have been studies in that area (I've posted a lengthy article on on the HTLVhelp face book page of every drug tested against HTLV). Unfortunately, the bottom line is that very few HIV drugs are effective against HTLV.

However, one medication that seems effective against HTLV is TDF (tenofovir, previously known as PMPA), which is a component of Truvada, the pill containing both TDF and emtricitabine. They did such a great job on the original PMPA development that is accidentally treats Hepatitis-B also (they deserve a Nobel Prize for that alone). Coincidentally, Truvada is being offering as PrEP (pre-exposure propholaxis) for high risk individuals after trials have shown that taking the pill once everyday has 100 percent effectiveness against HIV (this to me is nothing short of spectacular and miraculous).

So, if (BIG HINT TO EVERYONE) you go to your doctor and lie that you are sexually involved with an HIV positive person, you can be prescribed this pill as a Prep medication. I know everyone's situation is different, so those of you with great medical insurance (e.g. DFrank) would be able to afford this before the rest of us.

However, the better situation is to be taking TAF instead of TDF, since it is even MORE effective against viruses and LESS damaging to kidneys. AIDS groups have lobbied for TAF to be sold separately to combat HIV, but the company's looking at profits and not people's suffering. My gut feeling is that TAF will replaced TDF when the patent runs out on TDF in 2017.

For me, I cannot wait that long, the daily pain I am in is driving me insane. Not having anyone (a doctor, relative or friend) who understands what this feels like in terms of suffering and despair is incredibly overwhelming. I thank God that we found each other, especially guys like yourself, Scared, DFrank, Ustas, JB, WS, AdviseMe, et al. Eventually I am going to have to go the Truvada / PrEP route, risk damage to my kidneys, in hopes that this horrific pain & suffering goes away or at least minimizes.

To get back your original question: Dolutegravir (Tivicay) is an integrase inhibitor, and so far no integrase inhibitors have been shown effective against HTLV. We could hope that this one would be different, but testing would be required to validate that hope.

Meanwhile, TDF is a reverse transcriptase inhibitor, and apparently works against HTLV in a manner similar to Azacytidine (another powerful but expensive drug). Out of the classes of HIV drugs - NRTIs, NNRTIs, Protease inhibitors, and Integrase inhibitors - the latter two don't seem effective against HTLV, which is good news because those two classes are the most expensive.

Best wishes.
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Users who thank TonyDewitt for this post: jammy88  jammy88 

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replied August 30th, 2014
Experienced User
many thanks for your exhaustive explanation
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replied August 29th, 2014
Experienced User
TD,

do you think Dolutegravir (Tivicay) might work against Htlv ? It's claimed as a very innovative antiviral in terms of Hiv suppression.
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replied August 30th, 2014
Extremely eHealthy
You're very welcome
Smile
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replied August 31st, 2014
Experienced User
hey TD,

I was looking at some info concerning JAK inhibitors.. Looks like there's gonna be a lot of drugs available in the next 5-10 yrs. Whatu think ?

from Wikipedia:

Approved drugs
Ruxolitinib against JAK1/JAK2 for psoriasis, myelofibrosis,[3][4][5] and rheumatoid arthritis.[6] approved by the U.S. Food and Drug Administration (FDA) in November 2011 for myelofibrosis.
Tofacitinib (tasocitinib; CP-690550) against JAK3 for psoriasis and rheumatoid arthritis.[7] US FDA approved in November 2012 for rheumatoid arthritis.

In clinical trials
Baricitinib (LY3009104, INCB28050) against JAK1/JAK2 starting phase IIb for rheumatoid arthritis[8]
CYT387 against JAK2 for myeloproliferative disorders[9][10]
GLPG0634 against JAK1, for RA and Crohn's disease
GSK2586184 against JAK1, for Psoriasis and ulcerative colitis, but discontinued in SLE [1]
Lestaurtinib against JAK2, for acute myelogenous leukemia (AML)[11]
Pacritinib (SB1518) against JAK2 for relapsed lymphoma and advanced myeloid malignancies,[12] chronic idiopathic myelofibrosis (CIMF)[13]
TG101348 against JAK2; phase I results for myelofibrosis are published[14]
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replied August 31st, 2014
Extremely eHealthy
JAK inhibitors are effective against HTLV, but they can be dangerous. For two years, they've been advertising Tofacitinib (Xeljanz), the first approved JAK inhibitor. Included in the advertisement is a warning about risk of lymphoma.

Best wishes.
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