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Certain HIV positive, but negative tests (Page 51)

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September 26th, 2012
Experienced User
Hey guys, sorry! Had to take a break for a while and deal with some other life issues.. I've still been doing pretty good, but as we all know something is still not totally right with my health.. I'm going back and reading the posts I missed, so forgive me as it might take a couple of days to get a graspe on what's been going on with you guys.. I've been experimenting with my diet and some supplements... I stopped taking the candidia clear product and my good super strength probiotic, and I noticed a difference for the worst. I recently started taking them both again and immediately noticed that I feel better!! Probiotics are a great antiinflamitory, and have many other positive health qualities. Make sure you get them from the fridge section of your health food store, and that they are above 40 billion cells... By far this has been the most bennificial supplement for me. Everybodys body reacts differently to different things(that goes for viruses,parasites,bacteria, and even the medication and supplements we take to combat them). So what I suggest to you guys while we all try and find out what is happening to us is to treat the symptoms. Deffinetly I think we all are having a problem with a proper flora balance(candidia) for what ever reason. I've been experimenting with some erbs, and other supplements, and I notice when I combine them all my symptoms get worse. I've recently been suffering from dizziness and brain fog or confusion, trouble concentrating, but just the last week I went back to the initial protacal that made me feel better and it has started working already.. Diet is very important. Stay away from refined sugars, wheat products, especially white flour.. I want you guys to check out the sore throat mood virus, if anything else you can find some good treatment options... I can tell you guys what has made me feel better, but can't make you do it, you have to take a stand I try what ever remedies that will help you feel better until we can find out what is wrong... I've researched, and think there are new entro viruses out there that could be making us ill. New ones, that the CDC hasn't recognized yet, but I think it's just a matter of time. The new things going around seem to be more contagious than HIV & htlv.. I'm finding more and more people that are ill with similar symptoms, but don't know why.. Tony, I'm concerned with your positive Lyme antibody test, and personally think it could be part of your illness.. Especially with your joint and back pain, also trouble with your eyes hurting.. Also there are so many viruses out that they can't even recognize, I'm positive there is a new one( HIV like virus- like in china that seems to be more contagious than sexual contact, and the sore throat mood virus, that also seems more contagious) its time to look outside the box( its not HIV) but something new maybe.. Please take my experience and advice and look into the treatments for your symptoms! If you can suppress them and feel better it will make it easier for you to fight and focus on what is wrong.. For example when I used to go to my GP, I felt like crap and had no energy to fight with him that something is wrong,and that I'm not crazy, but when I feel better I can focus more on the facts and match his brain power. As you all know they will push you aside, and label you with bs stuff like CFS and fibromyalgia, ect. Unless you put up a stand and tell them it's bs. I'm back on the band wagon and will be checking in regularly...... Also hopefully in the next couple of months I will do more testing / cd4&8 counts , Lyme, and for tony htlv pcr! Hang in there guys! Thres no quick fix for now, but try some supplements and try and feel better... Have so much more to say and I will.... God bless!!
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replied September 26th, 2012
Extremely eHealthy
DFrank,

Thanks for catching us up on what's going on with you - clearly there's a cause & effect with your candida & probiotic treatments, and your diet. Fortunately you've spent enough time suffering to know what works and what doesn't work for you, and we can certainly benefit from your knowledge - the only other person I know who's been sick as long as you is 'OverStressed' from the Phoenix Rising forum - at least his doctor was honest enough to say that MANY patients are sick like us, and that there's something new or different out there virally, it just hasn't been identified yet. Thanks again for continuing to keep us informed on your progress, you're the official point man for the group!

Best wishes.
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replied September 26th, 2012
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Here's an excerpt from "JamBasher" on TheBody site regarding his suffering with HTLV:

And for anyone interested. Its my first post. Great site, helping probably millions of people. Wonderful work!

This is maybe not the right place to do this but still:

There seem to be the rather frequent occasion of people suffering from long lasting symptoms, many related to HIV and still repetitively testing negative.

Especially with people complaining of

Parasthesias
other mild neurological symptoms
Leg weakness
Dry eyes
Dry mouth
Dry skin
Gingivitis
Aphtous ulcers
Periodontal disease
Photosensitivity
Floaters
Joint paint
Generalized swollen lymph nodes
Persistant Rashes resistant to treatment
Palmar/plantar erythema = red hands and feet
Concentration difficulties
Shortness of breath
Chronic cough
Night sweats
Weight loss
Urinary tract infections and so on.
Some times also opportunistic infections like candida

You should think about HTLV infection. Even though it is considered mostly an infection where only few percent of the patients get symptoms, more and more studies from the areas in Brazil and southern america in general are showing that it is related to a lot of smaller problems and not only Leukemia and myelopathy.

Understandably the list is long, but still often people who have some of the symptoms have more. Especially the amount of small neurological symptoms and some oral symptoms that one would expect much later in the course of HIV are sometimes present early. Also with Palmar erythema, which would extremely rarely present it self in an early HIV infection

One aspect here is that most of the problems caused by the virus are though to be caused by the virus itself and autoimmune reactions caused by it. And even though some of the symptoms would seem like opportunistic infections caused by weakened cellular immunity, they are often though to be caused by the virus itself or because for example of insufficient saliva production in the mouth, dry mucous membranes in general, the bladder having problems emptying fully etc.

It seems some people are reporting a lot of these symptoms, many times when palmar erythema = red palms is associated, people seem to go for "HIV/Hepatitis C co-infection" asking about late seroconversion etc. having read about the "red fingers syndrome".

I have been researching this matter for a while now, since I see it a serious health problem, with a small chance of expanding. I also unfortunately happen to sufferer of many of the afore mentioned symptoms and have HTLV infection. The symptoms are persistent and started slowly after the beginning of the infection. In most cases so mild that it takes years to develop any problems even if they arise, but some people get symptoms a lot faster. I don't read about these diseases anymore. I know more than I would like to.

Just something to think about. It is an infection spread like hiv, but since its largely only found in endemic areas, which apart from Japan are rather poor, not a lot of information about it exists outside those areas. Very little is known about the science behind it and there is no specific treatment like for HIV. Especially with the false assumption that most carriers are completely asymptomatic and if they are not they are very very ill stated in many places can cause serious problems preventing the spread of the virus since most doctor who have even heard of it would not think that a test would be relevant. That is also one of the reasons the need for research is not considered that great.

I know this forum is not the place to rant about such things, but anyway, increased awareness is good. And since this is an infection so rarely screened for, it is bound to spread a little in the states, going relatively unnoticed.

The actions that limit the spreading of HIV limit the spreading of HTLV as well luckily, but even then people get infected with HIV every day.

Not to scare people, just to make a point. This has devastated the lives of many the life of many, many others will be affected.

Then my story. Read on if into drama. Otherwise, just get tested if you feel like it might be warranted. I generally don't like people listing their problems on the Internet. But now I know that when one has problems, one wants to list them sometimes. I don't want to list them to my family or friends to make 'em feel bad. Instead if listing them here would help at all, just with the hope that one person get spared from infection or the life long / years long mental strain of being clearly sick, thinking its hiv and repetitively testing negative, being told by doctors to get counseling. In many cases HTLV might not be the cause of the problems, but then again, its said to infect around 20-25 million people world wide and some of them experience more problems than others. That must be more common than "late hiv seroconversion, rare strain or body not producing antibodies" as many people are speculating here. When I got sick, both me and my gf got tested for hiv, after that I knew it was not hiv. No need to obsess, tests are good.

I happened to be unlucky I guess, very much so. and suffer from a large constellation of symptoms straight from the start. Having been completely healthy before, now in half a year after the infection having lost 7kg, have constant dry eyes and mouth, dental cavities, rapidly receding gums, chronic headache, problems urinating, impotence, hand tremor, chronic pan-sinusitis resistant to treatment that had to be operated on quickly because it spread to the sinuses around the eyes and deeper in the head. shortness of breath. I have also developed anhidrosis / hypohidrosis, I can barely sweat at all anymore. And this too is progressive. I get hot very very easily. I have night sweats every night, but without sweating. So I just wake up, feeling very hot and having tachycardia, feeling like my body is trying to sweat but no sweat comes my skin stays dry. So I lie awake for 2 hours without the blanket or take a cold shower, big deal. Cant do sports anymore either, my heart rate rising to 150 from just walking. I used to be a national level athlete. I was studying, doing great, loved my life, every bit of it. I was 22 when I got this, from my girlfriend, we had both been tested for all "possible" stds, just because we wanted to be smart. I don't know whether I got the transmission in oral sex, or improperly used condom, I don't care.

Physical problems can be accepted, if one has good friends around them and a realistic attitude. My biggest problem is serious progressive problem concentrating and remembering things. I don't really feel like talking to people anymore since, my attention is has problems understanding them. I'm having great difficulty reading as well, I read one paragraph and forget what it said, read it again again and so on. Used to be an A-level student. Just writing this was a nightmare, but if it helps anyone its worth it.

Because of all this there is not a single aspect of my life I can continue. Studies, relationship, sports, future plans. I have accepted this and try to do things I still can, hopefully at least one of them matters. This post might not help anyone, but it just might. Moderators delete, if you wish.

I don't write to get pity, I understand that me getting this unlucky doesn't make the disease anymore serious world wide. And as with HIV and other stds one often brings them on themselves by their actions. Yet I can say I have developed a great sympathy for all HIV sufferers around the world having read about these things. As with all people who are sick. No one deserves this kind of stuff.

In summary the problem here is that of a very very severe illness, not as severe as HIV, but in the western world, where HIV treatment is available, the problems caused by the infection may pose similar problems to people infected that a treated HIV infection would. It has to be addressed that when the problems become serious, no treatment to actually reduce the viral load or so is available yet.

Keep yourselves protected..
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replied September 26th, 2012
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Here is another example of HTLV white washing by the medical industry - the poster, 'gromov' on the ExpertLaw Site:

Kaiser Medical Negligence

Hello, I am seeking legal advice,

I am in tug war, this is exactly the way to put it with Kaiser Permanente. They are refusing to give me necessary tests to help diagnose my condition. They are also refusing to take into evidence laboratory finding that I did on my own at commercial laboratory, by saying that they can't interpret my lab results. As a result time keeps on dragging and I am walking around with untreated and undiagnosed infection/s that continue to damage my physical and psychological health.

I am infected with viral Hepatitis B. And I also being heaving for a period of one year, oral fungal infection, and lower lip swelling (Angioedema), and being heaving persistently enlarged submandibular glands(salivary glands), eye floaters, and I have being heaving frequent urination urges as well. I also was suspected of an HIV infection, but so far during the course of a year all tests have been negative. However two different HTLV tests revealed several reactive bands, documenting reactions to what is believed viral molecules related to this virus. So my status is Indeterminate. And I need further more specific testing to determine my status. All this effects my quality of life and causes profound emotional stress.

Kaiser Infectious Disease doctors continue to downplay theses findings, by stating they can't interpret these results, since they consider them investigational even thought these blood tests are in clinical use since 1998 and are in use by blood banks. I am being told since I am negative on their screening test for both HIV and HTLV I should not worry about it. Also Kaiser physicians don't seem to notice any of my symptoms, swollen salivary glands, coated tongue, yet when I went to emergency room at local hospital they have noticed all these symptoms. And I was told that my doctors are fooling around with my health. I even took pictures to show what I am experiencing, all this is being ignored. I feel like when I see a doctor at Kaiser as if I am buying a car, all I hear is You don't need this test, You don't need that test Plethora thickening on chest x-ray normal, no need to worry about, two nodules visible on thyroid gland ultrasound most people have that I am being constantly told that everything is normal. Show in writing who diagnosed you with swollen lymph nodes I brought my sputum sample that I collected into a water bottle for my primary care provider to look at and maybe send it to the lab because I periodically cough up this nasty looking stuff. My primary care provider looked at it and said I don't know what this is I asked him to send it to the laboratory for analysis he refused, so I ended up walking out and disposing a specimen that probably had some value.

I am being told indirectly that I have a mental problem, comments are made like I spend to much time on the internet obsessing about my illness, that most of what I am experiencing is normal. On treatment for Hepatitis B and Indeterminate HTLV status, seem to be experiencing opportunistic infections, immune system tests are not so great. If this is normal then I don't know what is not according to their standards? All this is insulting to hear coming especially from doctors, sure I do have an anxiety problem walking around in with all this filth in me and for one year I lived in anticipation and preparation of the worse possible outcome. To do all the necessary tests on my own I don't have enough money, not to speak if I need treatment it costs thousands which is why they are refusing to test me further. I have health insurance for which I pay three times as much what a regular person does because of chronic Hepatitis B, and I still can't get help, it is getting hopeless for me. I am 33 years old and I don't feel like being alive. I am being abused by Kaiser physicians. All my written communication attempts at getting me tested further for HTLV virus so far got me nowhere. In a letter response from Kaiser Medical Review committee I got this response: Request for HTLV testing using RIPA essay has been denied. The decision was based on: Test patient is requesting HTLV RIPA, is not medically indicated as it has not been shown to change or alter the treatment plan. makes me think I am dealing here with the common cold. What about stopping the transmission of HTLV, and patient counseling? They are in violation of WHO, and CDC standards as to how my case should be handled. They send me to another doctor that tells me he is in agreement with the previous one, and that I am fine and that they don't know what I am talking about regarding my symptoms. Everything is going the route that I am a mental case. It is becoming unpleasant for me to visit their doctors.

I am seeking legal help from an attorney who specializes in Kaiser cases, I want to expose these people. I don't want to suffer anymore health damages just because all they care about is profit. I have concrete facts and necessary medical documents to prove my case.

Sincerely,

Alexei in Southern California

(949)291-2417
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replied September 26th, 2012
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Another upset patient (who is a doctor himself) asks about HTLV (see question #4 below) and is shot down again on the MedHelp site:

cmiles2

Apr 03, 2010

To: Dr. H

Hello Drs and I hope you are having a good weekend. I also wanted to ask you a couple other questions. I am an optometrist so I do know about relevant and irrelevant symptoms. I am still having: lump in throat, pain in right groin in morning only, red cherry spots on skin, left abdominal pain, muscle spasms, and LOTS of new floaters OD>OS. I have had my other partner(ophth) take a look and he sees nothing of importance on dilation. I have had multiple partners (female) in past years. As I told you before, I have had DNA-PCR testing around 6 weeks post last exposure and EIA test done at 26 weeks which was negative for HIV 1/O/2. I also had previously done, rapid testing by fingerprick around 15 and 21 weeks. My questions are, 1)can I be 100% confident of no HIV infection despite persistent symptoms. 2) If I was infected prior to this last exposure, wouldnt I show antibodies by now? 3) Could any medications(finesteride/ fluconazole (100-200mg/day for about 5 weeks)) affect these latest tests? 4) Could it be something odd like HTLV I/II? 5) Should I test again for HIV or anything similiar. I would really appreciate your knowledge on this. I had one other thing to add but cannot for the life of me remember it. If so, will you allow me to return for that point? Thanks and have a safe and Happy Easter weekend.




Edward W Hook, MD

Apr 03, 2010


As a health care proivider, I am suprised that you are asking me to repeat myself. This will not change the answers.

1. See earlier answer. You do not have HIV.
2. Yes, you woul dhave antibodies.
3. No, these medications would have no effect on your test results.
4. No
5. No need for further testing.

EWH
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replied September 26th, 2012
Experienced User
Tony,

Reading above posts just known that you are infected with lyme. You should really seriously consider if your symptoms are caused by mycoplasma fermentans infection. It could cause all the symptoms we are experiencing.

Rheumatoid arthritis and psoriatic arthritis
Chronic Fatigue Syndrome
Fibromyalgia and Polymyalgia Rheumatica
Gulf War Syndrome
Autoimmune diseases such as lupus, scleroderma, vasculitis, multiple sclerosis and Sjogrens.
They have even been implicated in precipitating Hashimotos thyroiditis, Graves Disease, uveitis, appendicitis, Crohns Disease, ulcerative colitis and heart attacks.

Research by Dr Cecile Jardin (a French surgeon now based in South Africa and specialising in the treatment of chronic fatigue) has shown that the most common symptoms of chronic mycoplasma type infections include:

Sweats 28%
Chest pain and palpitations 47%
Bruising 48%
Visual disturbances 58%
Depression 62%
Recurrent sore throat 69%
Sleep disturbances 71%
Muscle and joint pain 73%
Memory and concentration impairment 80%
Headaches 80%
Fatigue 87%
Symptoms are caused by the release of 3 types of toxins into the blood:

Endocytokines that cause inflammation and pain.
Neurocytokines that produce neurological symptoms including the demyelinisation found in multiple sclerosis and psychiatric symptoms such as depression and anxiety.
Allergens causing allergies.
Mycoplasma infections can be occult. That means they can be asymptomatic and lie dormant until another bacteria, virus, parasite, stress or toxin activates it and causes the symptomatic phase.

It is contagious by means not only sexual contact, but also by saliva, air, etc.
Mycoplasma/ lyme infections can escape the attack from immune system due, that is why patients are not having fever and they are complainning muscle stiff and joint pain but CSR remains normal which is not clinically identified by doctors. These pains are actually come from the toxins released from mycoplasma.
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replied September 27th, 2012
Experienced User
I really want to test for Mycoplasma! Its a possibility.. I'm feeling a lot better these day.I guess I've adapted to my new way of living.. but I will go test for new possibilitiesas soon as I get some extra money. I'm pretty behind on my clinical bills..


Good to hear from you Dfrank.


Isthereanyhope can you please test for Mycoplasma! It will be very helpful

Right now I'm on some detox pills. I'm trying to see if it works.. supposed to clean up your system from parasites (worms) and improve your immune system. I'm on my 2nd day and 8more to go.. illl update if I see any. Improvements
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replied September 27th, 2012
Experienced User
D-man,

I was suggested very strong medication for parasites/worms. It's called Mintezol. I don't know may be prescription only.
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replied September 27th, 2012
Experienced User
D-man, glad you are feeling better!! Wandering what you have done to improve your health?
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replied September 27th, 2012
Experienced User
personnaly, I couldnt test for mycoplasma. There isnt such test labs in hong kong.

However, I contacted one of the member fromn the group "the chinese fear of aids".

He went to have a test in japan and get this mycoplasma fermentas tested positive.
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replied September 27th, 2012
Hello Everybody,

How are you these days? 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. You can browse about oral hairy leukoplakia.

I related my case with this. You can see online about the symptoms and the cause of it. Probably this might be helpful. The treatment is using antiviral med i.e acyclovir. I started this med yesterday.

I am 100% sure by one thing, all of us have viral infection, nothing else. I did wbc count 3 times. In february 3.4, in june 2.8. Now I did the 3rd test and the result is a bit better than the previous results, i.e. 3.7 its still low though.

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 hanging on our researches guys.

God bless us!.
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replied September 27th, 2012
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DarkGuy,

I agree that the cause is viral - ask your doctor to perform a Western Blot test for HTLV.

Best wishes.
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replied September 27th, 2012
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The high proportion of indeterminate results of the screening test for human T-lymphotropic virus (HTLV) infection has been a challenge worldwide. In this study, 60 persons with seroindeterminate results for HTLV were followed until their serological status was defined. At least two independent serological tests (EIA and WB) from sequential samples were performed at an average interval of 4.4 years, totaling 141 serum samples tested. Seroconversion occurred in 12 individuals (reactive by EIA, positive by WB and PCR), and 48 were classified as false reactions (non-reactive EIA and negative PCR, but indeterminate WB). The seroconverter group had epidemiological features similar to those seen in HTLV-1 carriers, and the average time of follow-up for seroconversion was 4 years. In the group with false reactions, the most frequent indeterminate WB pattern in the samples was the presence of p24 alone. This pattern was absent in the seroconverter group, suggesting that p24 alone is an indicator of false reactivity. In contrast, the presence of p19 and p24 seems to be an indicator of true reactivity, since this pattern was frequent (66.7%) among the seroconverters and much less common (10.4% of the first samples) among the individuals with false reactions (P=0.0001). Thus, HTLV infection may be suspected when reactivity to p19 and p24 is observed. Individuals with an indeterminate WB pattern should be followed-up and retested. The improvement of the HTLV algorithm screening of blood donors has been necessary to reduce inconclusive results and to avoid unnecessary follow-up to define the status of infection. J. Med. Virol. 82:1746-1753, 2010.
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replied September 27th, 2012
Guys im sorry bother you all im having persistemt lymph nodes of 1cm for 8 weeks now and wel i had a six week negative i wanted to know how reliable is this ....tyvm
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replied September 28th, 2012
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Albertoto,

Taking the HIV antibody test at 3 months will conclusively tell you what your HIV status, but at that point, STOP TESTING FOR HIV. Everyone else here has gone beyond 3 months and are negative, even though we are all sick with VERY SIMILAR symptoms.

Best wishes.
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replied September 27th, 2012
Experienced User
I'm not sure if we all are suffering from the same thing because some of our symptoms are different. I don't know if it's viral because viral diseases don't stay the same and persist without going in to sleeping periods.. all are symptoms continue to be the same and in the same locations.. I'm not saying it's not a virus but could also be bacteria or fungus or mites of some sort.. so let's keep our research open to anything..

Dfrank.. I started feeling better after I got my 7+ month hiv negative result
It made me realize that it's not gonna be the end of my life. So now I'm back in the gym and eating healthier and not thinking about dying anymore.. and I have just accepted my new condition. . I still feel the symptoms but I brush them off. I exercise and go out with friends.. working overtime .. that's right now..

Alberto.. we all had major and minor symptoms and all kept testing negative to this date.. will you share your story with us? It doesn't have to be detailed. Only wanna know your risky exposure.. what tests have you done?
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replied September 28th, 2012
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D-man,

I am happy that you are taking better care of yourself and have stopped testing for HIV - please try to convince the newbies that THREE MONTHS IS CONCLUSIVE for HIV testing - you're living proof of that!

I disagree with you that our symptoms are different, I recall my symptoms matched what DFrank and others experienced, especially with respect to back & walking problems (classic HTLV symptoms). I'm open to discussing any alternative diagnosis, but in the meantime I am going to continue to test for HTLV, since like HIV, there are three different tests for it: antibody, Western Blot, and PCR. DFrank's willing to take the HTLV PCR test once his schedule clears up. And I'm going to recommend that the group take the HTLV Western Blot test. If we are truly dedicated to getting to the bottom of this mystery, testing is what we have to do.

Best wishes.
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replied September 28th, 2012
Experienced User
Hi everyone!

Did H.Pylori blood test yesterday. It'll take couple of days for results to return. There's also stools test as well. It can be used for confirmation. Major pros - it's not invasive.

My next scheduled testing will be a HIV Combo ab/ag @ 4 month mark. I'm going to test till 6 months mark at least. Just to rule out HIV forever and stop worrying.

Does anyone experience morning sweats while waking up?
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replied September 28th, 2012
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Jason,

I've experienced sweats during the night, and now when I wake up my groin is sweaty to the point where my underwear is damp. This is a sign that whatever it is, our bodies are fighting it. Please don't keep pursuing HIV, once you are beyond three months, you are in the clear for HIV. We all have done that & we are all HIV negative, which is the good news thank God.

Best wishes.
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replied September 28th, 2012
Experienced User
Thank you for these words Tony!

Unfortunately my CD4 count is very low. I need to keep testing for some time to stay sane. The 4th HIV test will be the hardest ever.

Yes the groin is sweaty. 100% same here.
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replied September 28th, 2012
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Jason,

You're done with HIV testing - three months is the end of the road. You're HIV negative, don't waste any time or money on HIV once you're passed the three month point. The fact that we have similar symptoms also supports my point - neither of us have HIV.

Best wishes.
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replied September 28th, 2012
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Here's an excerpt from a CDC document showing the different criteria for determining HTLV positivity by different organizations (note that p24 is widely used in these tests, and that p24 is shared by both HTLV & HIV viruses):

CRITERIA FOR INTERPRETATION OF HTLV WESTERN BLOT TESTS

Public Health Service (PHS) Working Group - p24 and gp46 or gp61/68

Association of Public Health Laboratories (APHL) - p19 or p24 and one env* band

Consortium for Retrovirus Serology Standardization (CRSS) - p19 or p24 and gp46 or gp61/68

World Health Organization (WHO) - One gag** and one env band

Cambridge Biotech - p24 and gp46 or rp21e

Genelabs Diagnostics - HTLV-I
p19 (with or without p24) and
GD21 and rgp46-I

HTLV-II
p24 (with or without p19) and
GD21 and rgp46-II

* env bands = gp21, gp46, gp61/68
** gag bands = p15, p19, and p24
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replied September 28th, 2012
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From Journal of Virology Methods, 2011 May:

Because of the large number of WB-indeterminate samples and the cost of the WB assay in Brazil, it is proposed an algorithm that employs two antibody tests for screening and then real-time PCR to confirm the results, followed by testing any PCR-negative samples with the WB assay. This strategy reduces costs and improves the accuracy of the diagnosis of HTLV-1/2.
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replied September 28th, 2012
Experienced User
Dear Tony,

I understand that the false negative rate for HTLV is high. However, Don't you think that, as long as we are having much symptoms, why, even the PCR test, shows negative?

What do you think if some bone marrow can be obtained for a more accurate test? (Will all the virus be concentrated in the spinal cord)
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replied September 28th, 2012
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Hope,

Look at my last post (the one right before yours). In Brazil, where HTLV is taken VERY seriously, they're recommending a FOUR stage testing approach:

1. DOUBLE antibody testing for HTLV.
2. PCR testing for HTLV.
3. Western blot testing for HTLV.

The patient is only considered HTLV negative if all four of these tests are negative. Based on this approach, we should all get a Western Blot test for HTLV.

Best wishes.
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replied September 28th, 2012
Extremely eHealthy
PS: I just read that HTLV infection causes platelets to go high, and I've got it in writing that my platelets are high.
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replied September 28th, 2012
Experienced User
Dear TONY,

I understand the standard. But according to my understanding, this algorithm is to reduce cost. I quote the passage here.

-------------------------------start of quote------------------------------------
"The ability to confirm the diagnosis of human T-lymphotropic virus types 1 and 2 (HTLV-1 and HTLV-2) in at-risk individuals in So Paulo, Brazil by Western blotting (WB), conventional polymerase chain reaction (tax and pol PCR) and real-time PCR (pol) is compared. Seventy-three blood samples that were reactive in HTLV-1/2 serological screening enzyme immunoassays (EIAs) were evaluated. HTLV-1/2 was confirmed in 53 blood samples: 48 were positive by WB, 41 were positive by PCR and 42 scored positive by real-time PCR assays (37 of 48 WB-positive samples plus five WB-indeterminate samples that were further confirmed by sequencing). Although WB was able to detect more cases of HTLV-1/2 infection, the real-time PCR assay was able to discriminate between these two viruses and confirm an individual HTLV-1/HTLV-2 diagnosis in two HTLV WB-untyped samples and five WB-indeterminate samples. Because of the large number of WB-indeterminate samples and the cost of the WB assay in Brazil, it is proposed an algorithm that employs two EIAs for screening and then real-time PCR to confirm the infection, followed by testing any PCR-negative samples with the WB assay. This strategy reduces costs and improves the accuracy of the diagnosis of HTLV-1/2."
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My understanding is:

1) go through two times AB test. If both negative, the patient can be screened.
If any of it is positive, then
2) Go through PCR. If PCR is positive, then patient is infected. If not
3) Go through Western Bolt. If it is positive, then patient is infected.
This is my understanding

I want to bring out another point for concern (may be totally invalid), if the virus is active and causing so much symptoms for that long, it should have reflected at any of the test you taken.

Assume that your immune system does work, ab test should have given you the answer.

If you immune doesn't work, Virus must be active inside your body and PCR should, theoretically, have given you the answer.

I guess you must also come across information where by the proviral load is a marker of disease progress. If this is true, the chances of HTLV undetected for both test, especially you have gone through multiple times of them, should be really slim, theoretically. (Especially PCR.)

I agree that we should carry on testing. However, it is reasonable enough for you to look for other possibilities. (For me I am still trying to look for PCR, and if there is, western bolt). With the fact that your are lyme infected, many people who are lyme infected are co-infected with many mycoplasma strains and bacteria. However, to look for a mycoplasma fermentans test might be even more harder than looking for a htlv test.
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