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Certain HIV positive, but negative tests (Page 121)

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May 16th, 2015
If this is a mycoplasma it might be Mycoplasma Fermentans Incognitus which has been found in many people with Gulf War Syndrome. The most effective treatment that has been found has been a combination of an antiviral called Famvir and an antibiotic called Doxycycline. I am going to be tested for this mycoplasma in a few weeks and will report back.
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replied May 16th, 2015
Really almost certain this is it now. This matches my and all of the symptoms of most of the people in this thread, and I bet most of you haven't been tested for it:

"Acute/primary systemic mycoplasma infection can present with numerous and various life-threatening symptoms such as (night) sweats, neuropathy, rash (cheeks, trunk, etc.), pharyngitis, sleep disorder, heart palpitations, sensation of terror and/or irritability (hypothalamus controls emotions such as rage, fear and pleasure), muscle and joint pain, sensory and reflex hypersensitivity (e.g. sound intolerance), parkinsons-like twitching, motor disorder, adenopathy, confusion and anxiety, coagulated ejaculate, spleenomegaly, bleeding gums, rapid weight-loss, nausea, racing metabolism (thyroid/endocrine), sepsis (overwhelming infection), diarrhea and bowel disorder, shaking, weakness, temperature fluctuations, chills, drooling, blurred vision, metallic taste in mouth, numbness in extremities and back of head during attempted sleep, crippling spine, neck and back pain, difficulty turning neck, skin irritated by fabric coverings, and elevated herpes antibody titers."
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replied May 16th, 2015
Experienced User
I had all of these symptoms and this is certainly worth investigating further. I need to find a good ID center here in Italy. I got tested in a hospital that was supposed to have a great ID facility, however Doctors were not willing to believe my story…
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replied May 18th, 2015
Experienced User
Just a quick hello - sorry for the long delay. Basically, I am back to the new normal. Which is so much better than the initial year.

I tried so many doctors but so far none have any interest . I check here to see about any break thrus - I am sorry to all the new folks - bottom line for me is that you will get better but it will always be with you. And I think we will all keep having issues and will die earlier than normal or earlier than we would have

I think what we need is someone to map our genes including viruses. - This will help us identify what it is
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Users who thank wyomingscared for this post: jammy88 

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replied May 19th, 2015
Experienced User
Hi wyoming,

many thanks for you message. I totally agree with you.

I'm going to a dietologist in a few cuz I want to get my ideal weight back - I'm 57 kg now; I used to be 62 kg (height : 173 cm)

I agree that we might feel better, and probably die earlier to due lymphoma/leukemia.

Now the big deal is: what do I do with my life? Do I start a relationship with someone, 'forgetting' what I have? I don't know, I'm so confused. It just makes me really sad.


thank you
J
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replied May 19th, 2015
Extremely eHealthy
WS,

Well stated, and I am glad to hear from you Smile

Best wishes.
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This post has been removed because it did not meet our Community Guidelines.

replied May 19th, 2015
Experienced User
jammy! you bet you can have a relationship an family too, on yahoo news on the 18th there is a gentleman who is hiv + he has 3 young kids all hiv - an wife hiv - coming forth saying yes there is life after hiv + an Im living it trying to reduce the stigma that surrounds being infected,with a contagious disease. good for him!! don't let this stop you from being you an keep you from a life worth living! go for it jammy, just make sure your partner knows all the risks involved. others are doing it look on you-tube, I do agree I have something that will cut my life short so im living faster !!
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replied May 19th, 2015
Experienced User
hi TR,

thanks for the nice words. I agree on the HIV part, but this is not Hiv…. this is something else and we don't have drugs to reduce viral load or infectiousness.

At the moment, the only approach I/we can have is the typical 'wait and see'. How long is this going to last for? Just depressing. :-/
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replied May 20th, 2015
Extremely eHealthy
J,

My infectious disease doctor told me that the only approach for HTLV is "wait and see". In other words, like you said, no drugs to reduce viral load nor infectiousness, no matter how sick or close to death we are. We need SOME kind of treatment, otherwise we are just waiting for the grim reaper.

Best wishes.
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replied May 21st, 2015
The mycoplasma post patient zero put on interests me. Can be passed sexually & via insect bite.. Have an appt with ID specialist in June & will ask about this. Have had a look and symptoms match mine entirely.. Certainly something I'd never heard off nor tested for. Have tested to death everything else with a negative / normal result, as most of you have. Who knows hey? After neg neg neg I hope something gets a positive result along the way...
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replied May 22nd, 2015
Experienced User
Well stated Scared,

we're all hoping to get a kind of diagnosis, sooner or later. Hopefully this happens when it's not too late.
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replied May 27th, 2015
Mycoplasma is also airborne. Extremely contagious.
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replied May 27th, 2015
Look in your mouth with a flashlight and look for what are called "Crimson Crescents" (see photo below)

https://img3.wakelet.com/images/B/P/0/Hptw zd.jpg

These are thought to be the hallmark symptom for Mycoplasma Fermentans and are found in many Chronic Fatigue Syndrome Patients.

"One hallmark symptom of systemic mycoplasma infection, which results from abnormal stimulation of cytokines, involves a chronic red discoloration of the anterior pharyngeal pillars. Often referred to as 'crimson crescents,' this phenomenon can be easily detected by a patient with a flash-light and mirror; Standing in front of the mirror with your mouth open wide, you can point the flash-light into the mirror so that the beam will reflect back into your pharynx."
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replied May 28th, 2015
Experienced User
I have had this condition an still have the dark red area around back of throat was burning for months after exposure now still dark red can this not be a cause of a underlying disease? as well? trust me id love you too be right here, I so much rather have something they can treat then not anyone care too comment? rider, zero I do hope your right! im goin to ck further in this when I go in in july
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replied May 29th, 2015
Experienced User
Tenofovir alafenamide versus tenofovir disoproxil fumarate, coformulated with elvitegravir, cobicistat, and emtricitabine, for initial treatment of HIV-1 infection: two randomised, double-blind, phase 3, non-inferiority trials

Dr Prof Paul E Sax, MDcorrespondenceemail, David Wohl, MD, Prof Michael T Yin, MD, Frank Post, MD, Edwin DeJesus, MD, Michael Saag, MD, Anton Pozniak, MD, Melanie Thompson, MD, Daniel Podzamczer, MD, Prof Jean Michel Molina, MD, Shinichi Oka, MD, Ellen Koenig, MD, Benoit Trottier, MD, Jaime Andrade-Villanueva, MD, Gordon Crofoot, MD, Joseph M Custodio, PharmD, Andrew Plummer, MS, Lijie Zhong, PhD, Huyen Cao, MD, Hal Martin, MD, Christian Callebaut, PhD, Andrew K Cheng, MD, Marshall W Fordyce, MD, Scott McCallister, MD, for the GS-US-292-0104/0111 Study Team
Study investigators are listed in the appendix .
Published Online: 15 April 2015


Summary

Summary
Background
Tenofovir disoproxil fumarate can cause renal and bone toxic effects related to high plasma tenofovir concentrations. Tenofovir alafenamide is a novel tenofovir prodrug with a 90% reduction in plasma tenofovir concentrations. Tenofovir alafenamide-containing regimens can have improved renal and bone safety compared with tenofovir disoproxil fumarate-containing regimens.

Methods
In these two controlled, double-blind phase 3 studies, we recruited treatment-naive HIV-infected patients with an estimated creatinine clearance of 50 mL per min or higher from 178 outpatient centres in 16 countries. Patients were randomly assigned (1:1) to receive once-daily oral tablets containing 150 mg elvitegravir, 150 mg cobicistat, 200 mg emtricitabine, and 10 mg tenofovir alafenamide (E/C/F/tenofovir alafenamide) or 300 mg tenofovir disoproxil fumarate (E/C/F/tenofovir disoproxil fumarate) with matching placebo. Randomisation was done by a computer-generated allocation sequence (block size 4) and was stratified by HIV-1 RNA, CD4 count, and region (USA or ex-USA). Investigators, patients, study staff, and those assessing outcomes were masked to treatment group. All participants who received one dose of study drug were included in the primary intention-to-treat efficacy and safety analyses. The main outcomes were the proportion of patients with plasma HIV-1 RNA less than 50 copies per mL at week 48 as defined by the the US Food and Drug Adminstration (FDA) snapshot algorithm (pre-specified non-inferiority margin of 12%) and pre-specified renal and bone endpoints at 48 weeks. These studies are registered with ClinicalTrials.gov, numbers NCT01780506 and NCT01797445.

Findings
We recruited patients from Jan 22, 2013, to Nov 4, 2013 (2175 screened and 1744 randomly assigned), and gave treatment to 1733 patients (866 given E/C/F/tenofovir alafenamide and 867 given E/C/F/tenofovir disoproxil fumarate). E/C/F/tenofovir alafenamide was non-inferior to E/C/F/tenofovir disoproxil fumarate, with 800 (92%) of 866 patients in the tenofovir alafenamide group and 784 (90%) of 867 patients in the tenofovir disoproxil fumarate group having plasma HIV-1 RNA less than 50 copies per mL (adjusted difference 20%, 95% CI 07 to 47). Patients given E/C/F/tenofovir alafenamide had significantly smaller mean serum creatinine increases than those given E/C/F/tenofovir disoproxil fumarate (008 vs 012 mg/dL; p<00001), significantly less proteinuria (median % change 3 vs 20; p<00001), and a significantly smaller decrease in bone mineral density at spine (mean % change 130 vs -286; p<00001) and hip (066 vs -295; p<00001) at 48 weeks.

Interpretation
Through 48 weeks, more than 90% of patients given E/C/F/tenofovir alafenamide or E/C/F/tenofovir disoproxil fumarate had virological success. Renal and bone effects were significantly reduced in patients given E/C/F/tenofovir alafenamide. Although these studies do not have the power to assess clinical safety events such as renal failure and fractures, our data suggest that E/C/F/tenofovir alafenamide will have a favourable long-term renal and bone safety profile.
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replied May 29th, 2015
Experienced User
jammy; lol, what are they saying in my language which is simple? hows everyone doing anyway? im doing good, legs are feeling alittle weaker,after my big move,so I don't know whats up? but I feel well no pains otherwise,hope you other guys are good as well rider
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replied May 30th, 2015
Experienced User
Hi everyone

Just a reminder
I was tested positive for mycoplasma a couple years ago (it's in my previous post). However, I can't tell which one of the mycoplasma infections I was present with. It was a general test that was done it didn't specify the type.
When I took the result to my doctor, he shove it off. He said almost everyboy has it because it like the flu virus.

Hope we will be better soon.
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replied May 30th, 2015
Experienced User
Hi ustas,

i think your Dr. needs to reconsider his statement. Mycoplasma must be treated with antibiotics.. It would be interesting to know if you would feel better after such a treatment.


@Therider: the article talked about TAF vd TDF. TAF is the 'new Tenofovir' and is much less toxic than the previous one. Apparently, it is active against Htlv, too.

Best
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replied June 24th, 2015
Extremely eHealthy
TAF should be approved any day now, I'm going to be first in line to get that stuff!!!!

Best wishes
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replied May 30th, 2015
Experienced User
thanks for giving me the simple version of your article jammy was wondering where you where going with al that, now I know,I have don't some reading on this mycoplasma infections, very small bacteria,hard to treat an kill, can take several months of antibotics,an a certain type of antibiotic to kill then they test again to see if they got it,but if left untreated can it go on for years or many months like in our cases,I did have one doctor give me two weeks of strong antibotics an stated if this don't kill whatever you got then its something else, I said what else could it be she said I don't know.like what all these doctors say! an they keep your money for no results,rider
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replied May 30th, 2015
Experienced User
@ustas / TD / anyone else : do you guys still have dark circles under eyes? how did u get rid of it? any vitamins supplements / cream for face?
Does your face look a bit better now?

thanks !
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replied June 24th, 2015
Extremely eHealthy
I still have dark circles under my eyes, no idea how to treat that. My face does look a bit better, in sicker pictures my face was bloated.
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replied June 2nd, 2015
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PHARMA & HEALTHCARE 6/01/2015
Novartis, Juno Killer T-Cells Show Promise In Another Blood Cancer
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The genetically altered, cancer-killing T-cells known as CARTs showed dramatic results in non-Hodgkin lymphoma as the two leading players, the Swiss drug giant Novartis and the Seattle upstart Juno Therapeutics, pushed forward with new clinical trials.

The new results are to be presented at the annual meeting of the American Society of Clinical Oncology by academics working with both companies.

“I’ve had patients wheeled into the office in wheelchairs that are now leading normal lives,” says Stephen Schuster, MD, the Robert and Margarita Louis-Dreyfus Associate Professor in Chronic Lymphocytic Leukemia and Lymphoma Clinical Care and Research at the University of Pennsylvania, who is working with Novartis. “It’s spectacular therapy.”

The Penn group is presenting data from 19 patients with NHL that had failed treatment with chemotherapy and the cancer drug Rituxan. These patients have no treatment options and often fail bone marrow transplants.

In one type of NHL, called diffuse B cell lymphoma, 6 of 12 patients saw their disease reduced (called a response), including five who had a complete response, meaning that the cancer became undetectable. In a second type, called follicular lymphoma, all seven patients had a response, and in six patients it was a complete response. Schuster says the complete responses are “durable.” He adds: “I could actually see this replacing transplant in lymphomas.”

Schuster says that Novartis is planning a large, multicenter trial to test the cells in diffuse B-cell lymphoma. Novartis’ existing trial, in acute lymphoblastic lymphoma (ALL) , is running in the U.S. but no patients have yet been dosed in Europe, according to a company spokeswoman. She says the company has a “stretch goal” of filing with the Food and Drug Administration for approval in ALL next year and in diffuse B-cell lymphoma in 2017.

Juno is presenting similarly impressive data. In a dose-ranging study using CART cells developed at the Fred Hutchison Cancer Institute in NHL, 12 of 19 patients (63%) had a response.


But the data became even better when researchers used chemotherapy drugs to deplete white blood cells before they gave the treatment. Then, the Juno CART resulted in complete or partial responses in 6 of 7 patients, an 86% response rate.

However, two patients who got a very high dose of the Juno CART died. Juno says that no deaths occurred at doses that will be used in future trials, and that it has no plans to move this particular genetically engineered cell into studies that would lead to FDA approval.

Juno is also starting a multicenter trial of its cells, although that will be based in the U.S. Another CART company, Kite Pharmaceuticals, is in the process of starting a trial, too.

“The CART cell data I think is really exciting,” says Julie Vose, a hematologist/oncologist at the University Nebraska Medical Center and the president of ASCO. “We have to figure out which patients are responding to it. It is potentially a toxic therapy, and we want to utilize it only in those patients that really need it.”

She says that it is in the multicenter trials that we’ll really get a sense of the potential of these cells. Her medical center is participating in trials with Kite and Juno.
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replied June 5th, 2015
Active User, very eHealthy
How are you guys... drop by the other forums sometimes too. Someone might need ur line or advice there.
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replied June 5th, 2015
Experienced User
Hello all- very exciting news in USA today -

Virscan can look for 206 viruses - 1000 variations with a $25 blood test

Howard Hughes medical institute

Take a look - I am going to do this as soon as possible
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replied June 6th, 2015
Experienced User
Wscared yes I read that yesterday in yahoo news, I thought when its available here I would do the same deal, I think that's awesome would have saved me thousands over last 1 1/2 years paying doctors to shake head an say I don't know? , what do I test for I don't even know where to start, that's a quote by the way, should make jammy happy. if you get yours done before its available by me let us know what test all consists of therider
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replied June 7th, 2015
Experienced User
I had my blood work done and the results are back.


15 months after infection, my C-Reactive Protein is getting higher - still in range, but much higher than a year ago. It's now 0.29, while it was 0.01 in july 2014 (maximum accepted value is 0.50).

Other values are pretty normal, although the leukocyte formula is not as it should be.

No gammopathies, apparently.

I don't understand what is going on…

Going to see my GP tomorrow.
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replied June 7th, 2015
Experienced User
you should be doing the happy dance jammy if levels are still in normal ranges, I just ran into a friend at a store he said did you heard I said hear what? hes got cancer in all his lymph nodes they were the size of golf balls an he was a very healthy guy always even normal people are getting a lot of cancer jammy, so smile be happy with those results, an get ready for this new viral test for 25 dollars
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replied June 8th, 2015
Experienced User
Hope you guys know a little French. If u need translation just ask me. Good news regarding ATL treatment. From Japan, of course.

5/06/2015


Sciences de la Vie
Un mdicament contre le SIDA efficace pour traiter la leucmie cellules T de l'adulte


Le lymphome ou leucmie cellules T de l'adulte (ATL) est un cancer d une infection des lymphocytes T par le virus T-lymphotropique humain (HTLV-1). Ce virus est particulirement prsent au Japon, o plus d'un million d'habitants sont porteurs. Parmi eux, environ 5% dveloppent un lymphome, et les traitements existants contre cette maladie sont peu efficaces.

Le HLTV-1 et le VIH prsentant certaines similarits, l'quipe du docteur Kohei Tada de l'universit de Kyoto a test diffrents mdicaments efficaces dans le traitement du SIDA sur des patients victimes d'ATL. Parmi eux, il est apparu que la molcule Abacavir, un inhibiteur de la transcriptase inverse, tue slectivement les cellules T devenues cancreuses cause du HTLV-1 et empche ce dernier de se rpliquer.

Les chercheurs comptent lancer une tude clinique ds l'automne 2015 dans l'espoir de dvelopper une chimiothrapie base d'Abacavir efficace contre l'ATL.
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replied June 11th, 2015
Experienced User
So my GP told me that everything should be fine in terms of retroviral infections. HIV and HTLV cause monoclonal gammopathies, and I don't have any gammopathy . There was a gammopathy at onset of symptoms - highlighting an infection - but it is now solved. So in my case it is something else.. but nobody will never know what.

However, by looking at my bloodwork which is perfect, GP said the issue is finally resolved or in progress of resolution.

I hope to get my weight back and I hope I can restart to live normally.
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replied June 11th, 2015
Active User, very eHealthy
Goodness, batch of spirulina just arrived, so delayed for some reasons. At least its here now. I hear some suck on it as candies wc colors the mouth, tho when theres flake form, it can be added to meals like oats or shakes.
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replied June 11th, 2015
Experienced User
JAMMY that's awesome news for you an your family!!!!! im so glad you have to be feeling so relieved . wow what a weight lifted, im still feeling good riding hard! but something deep down I fear is not right, when that viral test ill try that keep a eye on blood work an keep enjoying every moment!! the rider
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replied June 12th, 2015
Experienced User
Thank you my friend,

I hope this is truly the end of a nightmare. I agree with my GP on the gammopathy thing - with HIV or Htlv I would have had a monoclonal one - , however I'm still scared since my symptoms have not totally resolved yet. Particularly, weight loss and fat loss in face is pretty scary. I hope the dietologist can help me.
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replied June 12th, 2015
Experienced User
Good luck with that spiraling, samm00.
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