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Certain HIV positive, but negative tests (Page 86)

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July 11th, 2013
Experienced User
Hey guys...just coming back for quick update. I have taken another HIV test at 14 weeks now an its negative. As is all Hep tests and HTLV antibody test. Also CBC test shows as normal. however symptoms still remain. Also still have major issue with brutal headaches. Working with Infectious Disease now. First time doctor was not dismissive of HTLV and did acknowledge possibility. also said symptoms fit many other virus infections so far. I will keep you posted on all pertinent information. i pray for all of us and wish everyone the best. Also I am willing to pay for test if Resp can get them for us. I am also wlling to travel anywhere in the US regarding this. Also it really boggles me that no girls are talking about this. As i mentioned before, the doctor did make an odd comment about a few different guys coming in with symptoms like ours with no obvious cause but no girls. Strange...anyway will keep you posted
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replied July 11th, 2013
Experienced User
Hopefully the infectious doctor can help. My symptoms are getting worse. My ears are constantly ringing and have oral problems. Dirty tongue and dry mouth. Back and neck is sore. I feel dizzy and disorientated and unballanced. This is all after 6 months exposer. My bowels seem normal. Eyes are also red.

What's ur current symptoms and how long since exposure?

When was your htlv antibody test taken?

I also can't believe why no girls have come in and I actually still talk to the girl I had exposure to. She's from work! And has no visible symptoms..
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replied July 11th, 2013
Experienced User
Hi everyone,

Did anyone ever experience night sweats? I haven't had any in a while but after the exposure I did a few times. Also is anyone having leg and knee pain? My legs are always sore like if I kneel down I have to pull myself back up. Also still noticing a decrease in muscle mass as well. Rib pain, and pain under my right rib cage. It's difficult for me to sleep on my sides at night also. Now recently I've been having pain in my kidneys as well. I went to the lab today my dr. ordered a kidney function test I should know the results tomorrow hopefully. Also I still have itchyness on my upper chest collarbone area as well that comes and goes.


Tony,

I got your message man and I'm sorry I missed your call I was already sleeping. I've been taking double doses of zquill to help me sleep at night. I have insomnia really bad. I'll give you a call tomorrow evening if that's ok.
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replied July 16th, 2013
Extremely eHealthy
Scared,

In the beginning, I had severe night sweats, so bad that it left a permanent outline on the mattress where I slept. Ditto for leg & knee pain, muscle waisting, and pain in my liver (same location as your right rig cage pain). I can sleep on my sides now, but in the beginning I could not. Also I had THREE MONTHS of insomnia in the beginning, I was praying to God that I could sleep, and now I finally can. Now I can sleep well but need to change sides a few times each night. Same for the chest itchiness on the collarbone area. One of my girlfriends got the dreaded chest rash, so everyone keep an eye out for that.

Again thank you & everyone else who has the resources to keep going to the doctors and getting tests done. After the hematologist screwed me over 2 months ago, I pretty much gave up on doctors.

Best wishes.
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replied July 11th, 2013
Experienced User
::::
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replied July 12th, 2013
Experienced User
Hi everyone!

I am feeling pain in my legs these days. My partner is also having these issues. This pain is muscle pain and i feel burning sensation at nights.

What is happening, i don't know.
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replied July 12th, 2013
Experienced User
~~~~~
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replied July 13th, 2013
Guys, I'm back from Brazil and finally had a chance to talk to the Dr. responsible for the Gene ID. Here is a summary of my conversation with him.

Gene ID S/A is a partner of the the Blood Center from Riberio Preto in the HTLV project. Despite the news after the initial results of the project, they still have a long way until they are able to launch in the market. Basically they created a company to focus solely on the manufacturing of the diagnostics kits (PCR) and this new venture made a partnership with a private lab which is also being prepared to perform this type of exam. Therefore, it's still early until I can provide you an estimate when the kit will be ready to market, particularly due to the uncertainties related to the registration of "in vitro" diagnostics products in Brazil, which is always challenging and full of surprises.

They don't have partners overseas yet, but he expects to start planning something by the end of 2013. They recently created this spin-off and are still looking for investors to help structure the business so that they seal deals with the brazilian goverment.

In essence, the kits aren't available yet, and they are in a clinical stage II at best. I'm sorry the news are not as good as we all had expected, but I'll keep in touch with him to understand when they expect to do new trials.

Personally, and I think I shared this with someone from this forum, I wouldn't set my hopes very high in getting a result that's very different from what some of us have gotten with tests here in the US. Why ? The objective of the development of this test is to have a cheaper alternative to the imported PCRs kits (which cost $170 a pop - import rates & expenses in Brazil are outrageous - trust me, I deal with it every day) and faster and more accurate results than the WB, which can take more than 3 weeks in Brazil.

Keep in mind that although Brazil is starting to chase the HTLV diagnostic, other countries like US & Japan are far ahead in the research of the disease and therefore are the reference to what Gene ID is trying to develop.

We have a great community here and we should stick together. Let's keep searching and sharing information. Knowledge and communication seem to be our single weapons fighting this unknown ailment.

Stay healthy.

RE
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Users who thank REsperanza for this post: Definatelyworried 

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replied July 16th, 2013
Extremely eHealthy
RE,

Thanks for doing all of the leg work on this - while I am very disappointed that this test is not yet available, I am sure that it will be used soon since HTLV is such a big problem in Brazil. I disagree with the comments about the test's accuracy, since it was developed mainly for the reason that current testing was NOT accurate enough, meaning tests that the medical industry is currently relying on are just not as good as the one that's being developed. And yes, the reduced cost of the test is an added bonus, since poor countries like Brazil are looking for cheaper tests. Another disagreement - the USA is NOT ahead in the research of HTLV, the USA won't even admit that HTLV is a public health problem.

Best wishes.
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replied July 13th, 2013
Experienced User
Resperanza,
You came through for us, thanks.
That directly and fully answers the questions I had about the Gene ID test from Brazil.
I hope your trip to Brazil was good and I'm glad you made it back safe.
I'm continuing my research, daily.
If i ever feel I could give you some info that could help you I definately will.
Your post are always extremely interesting.
Thanks.
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replied July 13th, 2013
Experienced User
I feel like this bacteria, fungus, (worms, parasites) got out of control and rare so our body doesn't know how to deal with it. A lot of my symptoms are lighter or gone nos. But new ones always appear.. here a list of my most painful or annoying symptoms.

Upper back pain (muscles in the middle of shoulder plates)

Hips are sensitive and painful (I can't run or eleptical) muscles are also sensitive and weaker

Throat is dry feels like a hairball I'd stuck there.

Itchy skin all over body including testicals and butt.

Digestive system is not right. But if I blow my nose sticky mucus comes out. And I have have a large solid poop, my throaght and h ead clears up a lot! So I'm thinking its in my stomach.

Tingling hands and feet. Like arthritis sometimes.

I can get depressed at any moment I feel the symptoms and shutdown and turn to alcohol.

Skin scars easy. Even with mosscito bites.

Gained 20lbs and I can't lose weaight even with 4 days at the gym and eating better.

Mostly feel my right body side is inflamed or affected more. Feet ankle, hip, ear pain.



What I suggest we all test for:

MRSA

Chagas disease

Worms, parasites

Mycoplasma

H. PYLORI (I tested positive for this)

All Heps and syhillis again..


PLEASE TAKE THESE DISEASES SERIOUSLY AND A BIG POSSIBILITY. LETS TEST FOR THESE..

THANK YOU ALL STAY STRONG
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replied July 15th, 2013
Experienced User
Hi Depressedman

Your symptoms fits the bunch of China-Aids-Like disease well. Including symptoms subside after certain amount of time with a few persistant symptoms.


There are also people who's symptoms gone completely.

Female tend to have much lesser symptoms or no symptoms at all.

Those with less symptoms have a relatively better blood work - Higher CD4 and CD8 counts. They normal get through the "acute period" much faster.

I know a few guys who has no more symptoms. They do not know the reason as no specific treatment was done.

In my opinion this might not be HTLV, because our blood were sent to serveral research center for ANY virus detection but nothing was found.

I suspect this is something that when it goes into the body it punches your immune system hardly. But it comes once. After that your immune are being burdened by other pathogens and cannot come up again until your body slowly clears out some of these pathogens.

Looking at the patients with lesser symptoms, I would think this is something that normal human can overcome by their own body. We are a group of people with partial immune dysfunction leading to severe symptoms.

Due to the fact that some patient "recovered", I would think what we need to do is to boost up the immune system to fight against this illness.

Currently I am going to take thymosin to increase CD4 and CD8 counts. May consider interferon as well. Hopefully it helps my immune to battle this nasty stuff.
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replied July 13th, 2013
Experienced User
Hey guys, how are you all doing?

I'm having strange feelings in my feet and burning sensation in legs. Still having abdominal problems as well.
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replied July 13th, 2013
Experienced User
Pretty much the same. Stiff neck dirty tongue an legs feel weak an sleepy. Do u guys have phlegm and dirty tongue or ears ringing?
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replied July 13th, 2013
Treatment of idiopathic CD4 T lymphocytopenia with IL-2
Has anyone here very low CD4/CD8 yet ?


Idiopathic CD4 T lymphocytopenia (ICL) is an unusual immune defect in which there is an unexplained deficit of CD4 T cells, leading to fungal, parasitic or other serious opportunistic infections. Current treatment efforts are directed at eliminating infections. Here we describe the use of a novel treatment, subcutaneous polyethylene glycol (PEG)IL-2 injections, in a woman with this disorder, who had chronic severe mycobacterial disease which led to repeated hospitalizations, and advancing respiratory insufficiency. For this patient, PEGIL-2, 50 000 U/m2, has been given by weekly subcutaneous injections for 5.5 years. This treatment has resulted in marked (and still continuing) long-term immunological improvement with normalized T cell functions and increased CD4 cell numbers. She has had substantial clinical improvement with clearing of mycobacterial disease, reducing hospitalizations and improved lung functions. The improvement seen in this patient suggests that low-dose IL-2 is a safe and practical therapy, which might be useful in other subjects with this potentially serious immune defect.
Keywords: lymphopenia, T cell, IL-2 treatment, Mycobacterium chelonei, Mycobacterium avium
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replied July 14th, 2013
Experienced User
Resperanza,
Not only is a low cd4/cd8 number indicative of immune and health abnormalities, but also having too high of a cd4/cd8 number is of concer just as well. Even with a normal cd count, something could still be wrong. However a normal cd count is always desireable in any situation.
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replied July 14th, 2013
Experienced User
Resperanza
I'm actually thinking of ordering this test very soon.
Have you had a cd4/cd8 test performed?
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replied July 13th, 2013
Experienced User
Do they test for cd4 and cd8 in regular blood tests?

I have not been aware of any blood abnormalities as yet
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replied July 13th, 2013
nope , it has to be requested by your Dr. Find a Infectious disease Dr. and tell him to include the CD4/CD8 (along with Ig subclasses) to a regular ID panel. I suggest you provide a few reasonable symptoms (i.e. avoid psychosomatic & non-specific symptoms such as sweating, flushing, palpitations, or those classic "butterflies.")help him justify the test to your insurance. I hope it helps.
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replied July 13th, 2013
Experienced User
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replied July 14th, 2013
Enterovirus Testing

There are a number of difficulties in testing for the presence of enteroviruses in the body in the case of chronic infections. This is because in chronic enterovirus infections, very few viral particles are present in the blood or tissues, and so only very sensitive laboratory tests are able to detect these infections.

ARUP Lab micro-neutralization tests are the only blood tests that are sensitive enough to be able to detect the very low levels of enterovirus antibodies typically found in chronic, long-term infections. If you suspect you may have the virus described on this website, these ARUP Lab micro-neutralization tests are probably the best ones to take.

Dr John Chia found that this ARUP Lab micro-neutralization antibody test is highly sensitive and specific: the test is able to detect the very small quantities of enterovirus antibodies that are present in the blood in chronic enterovirus infections, and furthermore, this test will determine which specific coxsackievirus B serotypes you have (it tests for all 6 Coxsackie B viruses), and which specific echovirus serotypes you have (out of the 5 echoviruses tested). These tests can be ordered directly from ARUP or ordered through Labcorp (if ordered through Labcorp, write on the form to specifically send this test to ARUP). The ARUP Lab coxsackievirus B1 to B6 antibody test is here, and the ARUP Lab echovirus antibody test is here.

The immunohistochemistry enterovirus test is a more sensitive (but unfortunately less specific) way of detecting chronic enterovirus infections. The immunohistochemistry test is more complicated, as it requires a tissue sample that must be collected from a stomach biopsy using an endoscope. The tissue sample is then tested for the presence of enterovirus VP1 protein. Dr John Chia has pioneered this approach for detecting chronic enterovirus infections in ME/CFS patients, and with this technique he has consistently demonstrated the presence enteroviruses in the stomach tissues of ME/CFS patients. This immunohistochemistry test can detect all types of enterovirus, and it is the most sensitive test of all, but it unfortunately does not determine the specific types of enteroviruses you have, whereas the ARUP micro-neutralization does determine the specific types of enterovirus you have.

Taking a enterovirus CFT test (Complement Fixation Test) for chronic enterovirus infection is NOT appropriate. The enterovirus CFT test is fine for testing acute enterovirus infections (in the first 10 days of infections), but it is of no use whatsoever for chronic enterovirus infections.

More details on the ARUP micro-neutralization test and the immunohistochemistry test can be found on the Enterovirus Foundation web site.
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replied July 14th, 2013
Experienced User
..
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replied July 14th, 2013
Experienced User
..
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replied July 20th, 2013
There is report said: the people infected this disease are always the Asian.
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replied July 20th, 2013
I suggest that you should ask the government for help!!!I think it's the best way !
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replied July 20th, 2013
The disease had occurred 10 years ago!
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replied July 20th, 2013
Some people say that the virus is made by some country,and it is a conspiracy.
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replied July 14th, 2013
Experienced User
Has anyone got ringing ears??
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replied July 15th, 2013
Experienced User
..
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replied July 20th, 2013
Hi I am from China.I was infected the disease too! We ask our government for research ,but they think that we just be afraid of AIDS.The patient don't agree with the government" opinion.We organised many patient to the CDC,but they always perfunctory us.
Mann patient has got cancer and die at last! It's terrible!!!!I hope we try our best to find what Virus or bacteria it is!!!!

The following is the information about the disease:

The China Area:The first infected person appeared about in the year of 2000.Because of Long incubation period and high hidding of the virus,ToMarch 2011, medical cases of this illness appeared in Beijing,Shanghai,Guangdong,Zhejiang,Hunan, Jiangsu etc.Now the number of the infected persons estimated is above one hundred thousand in above 20 provinces all over China.
Part one: pathological features
The persons Infected infected by the unknown virus have many features like the HIV infectors,but they examine many times at longest 3 years and find they are not HIV infectors. Clinicalreports show that they don’t have many common organic diseases.So they are called the negative HIV infectors.
After we infected this "unknown virus",flu-like symptoms first appeare,high fever or low-grade fever ,drowsiness and nightmares,severe throat discomfort,rhinitis,otitis media may also occur.Usually in the arm and chest skin blood appeares purple points.Skin indentation is not easy to subside, can also be rash.Mandibular lymph nodes, severe groin and armpit lymph nodes will be out.At the same time we feel weak,easy sweated.We have red eyes, dry mouth,more yellow urine with foam.After further deterioration,fatigue, weakness, insomnia, anorexia, nausea, dazed mind, weight loss ,oral ulcers, white fur, skin with white dust ,ring joints , numb hands and feet , hairs out of body,swelling finger joint will appear.Then we can’t see things clear, floaters will appear. And we have a pain on lymphatic vessels. Our body skin become black , grease comes out form the skin,body joints can’t function well and will make a sound when joints move, especially our feet, shoulders. Muscle flashing, thymus atrophiny will appear,too.After we infected about in 1 to 2 years, sternum will collapse, skin become dry like zombie,skin nodules, Ulcer will appear.
After having a high fever, women will have a lung infection and lung markings will appear.About half a year later, the infectors will have a pain on ribs,most of their sternum will collapse.Woman infectors will have sagging breasts,man infectors will have erosive gastritis.Their fingernail will become thinner,or even fall off.All of the infectors feel their liver uncomfortable.Reports show that their liver function,blood are unnormal.Cause of different Constitution,many infectors will have some different pathological features.But after infected in 2 weeks to 3 months, the infector’s family will have the same pathological features,or they say their family are infectd.
Pictures about pathological features:

White tongue with villus


The HIV test report.


The red Typhus

The festered fingers.


The deformated patellas, legs, feet


The collapsed sternum


The collapsed sternum positions from the 5th sternum to xiphoid.


The diaphragm shrinks.


Serious Hair loss



Fungal skin infections


Parasites from eyes


Part two: routes of infection
Routes of infection about this illness is body fluid,including blood ,saliva,even sweat.Many of the peopel get infected because of dirty sex or having meals with infectos who are not known about this illness.Almost every infector has the same pathological features to AIDS.The fact that infectors’ family will have the same or similar pathological features after living with the infectors in 2 weeks to 3 months shows that common life will spread this illness.

Part three: family protection
From many infectors experience of their own, if only they found that they have the same or similar pathological features, firs,they want to protect their family form infecting. Isolation is their best choice,but that deeply hurt their family.So most of them choose to eat along,wash along, not share utensils,not use the same toilet.And many of them keep their home dry,clean and even don’t talk closely.

Part four: Medical examination report
Laboratory tips
1 Medical examination report show that the infectors are infected by 8 different virus such as EB,HHV6, HHV7,several Fungi Spores, bacteria, Neisseria gonorrhoeae, Candida, Lo Xuan bacteria Helicobacter and so on.However, they still can’t find the real pathogens.
2. After being infected,most of the infectors’ T-lymphocyte subsets from the blood change a lot, Laboratory data show that T-lymphocyte subsets get loss. CD4:350 to 450;CD8:190 to 250. Routine blood test shows that many test items are unnormal,.Such as that the rate of lymph increases, the rate of neutrophils and Mean platelet volume fall down. Urine and stool tests shows there is blood in urine and stool. Thyroid gland is also unnormal.Part of the infectors have kidney crystals.After being infected in several years,part of the infectors’ CD4 will raise.However,part of the infectors CD4 will still falls down,but CD8 will raise.
The infectors whose CD4/CD8 is inverted will have “better” pathological features;Whenever,the infectos whose CD4/CD8 is “normal” will get different pathological features.


Detection of fungi.


Detection of Mycoplasma Chlamydia.


Detection of the virus of EB.


Thickening of lung texture


Detection of lymph is serious abnormal.


Abnormal inguinal lymph

Part five: Diagnosis and treatment
From so far as we know, no one of the ten thousands of infectors has been cured and no detection reagents can be used on this unknow virus or pathogens.However,now there are some scientists are studying a item they called “How to identify a kind of acquired immune deficiency bu unknow pathogens”.Some Dr. think this illness is caused by rare syndrome virus,some forigner scientists think this this unknow virus or pathogens can cause the same pathological features to AIDS,but they still not find the pathogens.Although there are many different ideas,now the infectors can’t get effective treatment.It is said there are some medicine can be used on this illness,but we still don’t know that medicine clear.But we are trying so that we could live longer and even save ourselves’ life.Though different media,we reflect this situation to all of the study agencies and departments for help us to find the real pathogens and to cure this illness.Now there are some medicine to inhibit of the rapid deterioration of condition,such as antibacterial drugs and herpes type injection.However,if we stop use these drugs, we will get worse.
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