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Certain HIV positive, but negative tests (Page 63)

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User Profile
February 9th, 2013
Extremely eHealthy
D-man,

I understand your frustration and desperation, we are all feeling the same way and are in the same nightmare! There's not a day I don't regret what I did on November 6, 2011. Most of us are suffering with this for over a year, some even for multiple years (DFrank). There's also not a day that I don't curse the medical authorities for not warning us about this - how could they keep this from us as a society for 33 years?

My body hurts so much, and what's worse is that I know this thing is going to kill me. This isn't herpes where you have a rash now and then, this is a disease that wrecks your immune system and causes leukemia and death. Even the lucky victims get to spend the rest of their life in a wheelchair - what kind of crap is that? My point is that focusing on the symptoms is small potatoes compared to the big concerns - death from leukemia and paralysis from HAM (HTLV associated myelopathy) are the major concerns.

Like HIV, HTLV can causes menstrual problems for women. I know because I infected women after the doctor gave me the "you're crazy" diagnosis - yet another dereliction of the medical industry's duty - telling someone who is clearly sick that he is fine, so other people can get infected too.

Obviously AdviseMe & myself know this is HTLV - it has all of the symptoms. The fact that symptoms started for us right away has nothing to do with it being a virus or not a virus. Sorry, but the post that said all viral infections don't show right away is wrong - every virus behaves differently in everyone's body, e.g. people can be dead from Ebola in days.

We can use this forum (Im surprised that the 176 pages of entries haven't been deleted by the "authorities") as long as they'll let us, and we can post complaints about our symptoms and possible diagnoses. BUT it's not going to change the fact that we have this and it's not going away. So I am asking for all of you to consider what we should really do to get this disease further down the road. I started HTLV related petitions on SignOn.Org that couldn't even reach 50 signatures. I started the HTLVhelp site with the same hope. Same for the HTLVhelp face book page. None of those efforts have gone anywhere - I understand that some of you are still in shock and denial about this. However, if 100 percent of us don't push for HTLV to be recognized as a disease, all of my efforts / money spent will die on the vine.

I really need all of you to sign the petitions on SignOn dot Org AND to get your friends to do the same. I really need all of you to use the forum on HTLVhelp dot com or HTLVhelp on face book if they pull the plug on the enormous forum we've created here. Otherwise what's the point of us logging in everyday complaining about our symptoms? Don't all of you want to be recognized as having this disease? Don't all of you want accurate testing? Don't all of you want to be treated? Don't all of you want to be cured? I already know the answers to all of these questions is an emphatic yes, so let's consider moving forward with this, otherwise we're just a bunch of people complaining on the internet while waiting for death to come for us. Each of us needs to be an advocate for this disease, it's what it will take for us & this disease to stop being ignored and start being dealt with.

Advocacy is just part of the effort - we also need to start taking medications to see what will stop this disease. So far my research has turned up two different medications - Azacytidine (Vidaza) and Tofacitinib (Xeljanz). Vidaza would require a sympathetic hematologist, and Xeljanz would require a sympathetic rheumatologist. By sympathetic, I mean that the doctor would have to care about you enough to not give you the "crazy" label and prescribe the drug to see if it resolves the disease. So start networking to see if you can find friends of friends / friends of relatives / ANYONE willing to give you either of these. These drugs are very expensive, but so is your death and your funeral.

Those of us who have good medical insurance (Scared, DFrank) are in the best position to try these drugs. Im going to see if I can get an appointment with a local rheumatologist so I can try Xeljanz - Im not saying it will be a cure, but the pain is so bad as I am typing this post that I want to kill myself just to end the misery. Anyone who can get Vidaza to treat HTLV is literally walking on the moon, since it did cure a patient in Greece after 8 months. Imagine being cured of this horrible disease after 8 months of Vidaza, AND being only the SECOND person EVER in history to have received this treatment? Wouldn't that be a fine day! If we don't start taking treatments for this disease, we're going to eventually die. Look at Alberto in Italy, he's got leukemia from HTLV in only 7 years - how will I even know if he's dead? Im sorry for playing the death card, but we have to snap out of the rashes and soreness complaints and ask ourselves "do you want to die?". After you answer that question, I want you to commit yourself to being an advocate for the disease and a test patient for the drugs that I mentioned - I can't do this by myself! Otherwise our lives and our suffering and our deaths will have meant NOTHING, and will be completely covered up by the authorities. Is that how any of you want to leave this world? Another "mysterious" death by sepsis, like what happened to Doctor Bob? Imagine the irony of one of the greatest HIV advocates (and a doctor, and partnered with a doctor) in history dying from sepsis and they STILL can't accept that he had HTLV AND that it killed him - there is nothing more insane in this world than what happened to Doctor Bob and how it was so poorly handled. Doctor Bob is us, and we are Doctor Bob - we don't have HIV, but we do have what killed him. His death alone should be enough reason for us to get this disease out into the light.

Please be honest with me about your feelings - would the embarrassment of having HTLV stop you from being an advocate or test patient? I really want to understand why all of my efforts to galvanize us towards recognition and treatment of HTLV have failed.

AdviseMe, you make an excellent point, most people never even heard of HTLV until I mentioned it on this forum. Furthermore, your point about HIV originally being called HTLV-3 proves that HTLV was recognized BEFORE there was the term HIV even existed.

Best wishes.
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replied February 9th, 2013
Extremely eHealthy
D-man,

I understand your frustration and desperation, we are all feeling the same way and are in the same nightmare! There's not a day I don't regret what I did on November 6, 2011. Most of us are suffering with this for over a year, some even for multiple years (DFrank). There's also not a day that I don't curse the medical authorities for not warning us about this - how could they keep this from us as a society for 33 years?

My body hurts so much, and what's worse is that I know this thing is going to kill me. This isn't herpes where you have a rash now and then, this is a disease that wrecks your immune system and causes leukemia and death. Even the lucky victims get to spend the rest of their life in a wheelchair - what kind of crap is that? My point is that focusing on the symptoms is small potatoes compared to the big concerns - death from leukemia and paralysis from HAM (HTLV associated myelopathy) are the major concerns.

Like HIV, HTLV can causes menstrual problems for women. I know because I infected women after the doctor gave me the "you're crazy" diagnosis - yet another dereliction of the medical industry's duty - telling someone who is clearly sick that he is fine, so other people can get infected too.

Obviously AdviseMe & myself know this is HTLV - it has all of the symptoms. The fact that symptoms started for us right away has nothing to do with it being a virus or not a virus. Sorry, but the post that said all viral infections don't show right away is wrong - every virus behaves differently in everyone's body, e.g. people can be dead from Ebola in days.

We can use this forum (Im surprised that the 176 pages of entries haven't been deleted by the "authorities") as long as they'll let us, and we can post complaints about our symptoms and possible diagnoses. BUT it's not going to change the fact that we have this and it's not going away. So I am asking for all of you to consider what we should really do to get this disease further down the road. I started HTLV related petitions on SignOn.Org that couldn't even reach 50 signatures. I started the HTLVhelp site with the same hope. Same for the HTLVhelp face book page. None of those efforts have gone anywhere - I understand that some of you are still in shock and denial about this. However, if 100 percent of us don't push for HTLV to be recognized as a disease, all of my efforts / money spent will die on the vine.

I really need all of you to sign the petitions on SignOn dot Org AND to get your friends to do the same. I really need all of you to use the forum on HTLVhelp dot com or HTLVhelp on face book if they pull the plug on the enormous forum we've created here. Otherwise what's the point of us logging in everyday complaining about our symptoms? Don't all of you want to be recognized as having this disease? Don't all of you want accurate testing? Don't all of you want to be treated? Don't all of you want to be cured? I already know the answers to all of these questions is an emphatic yes, so let's consider moving forward with this, otherwise we're just a bunch of people complaining on the internet while waiting for death to come for us. Each of us needs to be an advocate for this disease, it's what it will take for us & this disease to stop being ignored and start being dealt with.

Advocacy is just part of the effort - we also need to start taking medications to see what will stop this disease. So far my research has turned up two different medications - Azacytidine (Vidaza) and Tofacitinib (Xeljanz). Vidaza would require a sympathetic hematologist, and Xeljanz would require a sympathetic rheumatologist. By sympathetic, I mean that the doctor would have to care about you enough to not give you the "crazy" label and prescribe the drug to see if it resolves the disease. So start networking to see if you can find friends of friends / friends of relatives / ANYONE willing to give you either of these. These drugs are very expensive, but so is your death and your funeral.

Those of us who have good medical insurance (Scared, DFrank) are in the best position to try these drugs. Im going to see if I can get an appointment with a local rheumatologist so I can try Xeljanz - Im not saying it will be a cure, but the pain is so bad as I am typing this post that I want to kill myself just to end the misery. Anyone who can get Vidaza to treat HTLV is literally walking on the moon, since it did cure a patient in Greece after 8 months. Imagine being cured of this horrible disease after 8 months of Vidaza, AND being only the SECOND person EVER in history to have received this treatment? Wouldn't that be a fine day! If we don't start taking treatments for this disease, we're going to eventually die. Look at Alberto in Italy, he's got leukemia from HTLV in only 7 years - how will I even know if he's dead? Im sorry for playing the death card, but we have to snap out of the rashes and soreness complaints and ask ourselves "do you want to die?". After you answer that question, I want you to commit yourself to being an advocate for the disease and a test patient for the drugs that I mentioned - I can't do this by myself! Otherwise our lives and our suffering and our deaths will have meant NOTHING, and will be completely covered up by the authorities. Is that how any of you want to leave this world? Another "mysterious" death by sepsis, like what happened to Doctor Bob? Imagine the irony of one of the greatest HIV advocates (and a doctor, and partnered with a doctor) in history dying from sepsis and they STILL can't accept that he had HTLV AND that it killed him - there is nothing more insane in this world than what happened to Doctor Bob and how it was so poorly handled. Doctor Bob is us, and we are Doctor Bob - we don't have HIV, but we do have what killed him. His death alone should be enough reason for us to get this disease out into the light.

Please be honest with me about your feelings - would the embarrassment of having HTLV stop you from being an advocate or test patient? I really want to understand why all of my efforts to galvanize us towards recognition and treatment of HTLV have failed.

AdviseMe, you make an excellent point, most people never even heard of HTLV until I mentioned it on this forum. Furthermore, your point about HIV originally being called HTLV-3 proves that HTLV was recognized BEFORE there was the term HIV even existed.

Best wishes.
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replied February 9th, 2013
Experienced User
We'll guys not good,

That trip was a total waste, I drove 2 hrs. to this hospital for nothing. I told him all my symptoms and all he did was run this scope through my nose down my throat to my voice box. He said he didn't see any masses or leisions (which is a good thing) and anything that concerned him, just some mild inflamation. He prescribed me some nasal spray and some reflux medication the same thing the other ENT Dr. that I've been seeing has done. I was in there maybe 20 minutes I was so pissed off. He told me he wanted to come back in 3 months. Man a 100 mile trip for pretty much nothing, he seems to think its throat reflux. Just something else to be depressed about I'm sorry guys I really thought I was going to figure something out.
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Users who thank Scared49 for this post: TonyDewitt 

replied February 10th, 2013
Parvovirus,JC, EBV, HHV8 are not dangerous for people.
for HHV8 http://www.biotrin.com/HHV8_FAQ.html

for parvo http://www.cdc.gov/parvovirusB19
/fifth-disease.html

and JC http://en.wikipedia.org/wiki/JC_virus

for EBV http://en.wikipedia.org/wiki/Epstein%E2%80 %93Barr_virus
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User Profile
replied February 11th, 2013
Extremely eHealthy
D85,

While Parvovirus, JC, EBV, and HHV8 are not dangerous for people, they do cause serious pain and suffering on the order of months to years - I know because I contracted all four of them. After that initial suffering, the long term effects of these viral infections can be cancers - Burkitt's Lymphoma for EBV, Kaposi's Sarcoma for HHV8, PML for JC, and whatever long term Parvo does (I believe it affects the bone marrow. Thanks for your links, so that people can judge for themselves what your idea of "dangerous" is.

Best wishes.
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replied February 10th, 2013
tony,

Have you tested positive htlv
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replied February 10th, 2013
tony,

Have you tested positive htlv..take the western blot, if neg..lets end this
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replied February 10th, 2013
Experienced User
Hi

Back again, symptoms have not getting any better since I started with medication.

I am 20 years old for what it is worth.
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Users who thank msamsamsa for this post: TonyDewitt 

replied February 10th, 2013
Experienced User
Tony,

You are absolutely right. I had never heard of htlv. I think many of us were so concerned about hiv and our symptoms we are looking for anything to explain it.

My biggest issue is finding a dr to work with. They do not believe any of the symptoms especially if the standard tests do not point to something.

Since my initial symptoms I have improved dramatically. Primarily now just poor appetite and ED. I have been taking garlic, b12 and probiotics.

Can not say if this has helped, only that this is what I have done so far. Also I spoke to a couple of people who had a similar situation and they advised their symptoms also went away after several months.

My biggest concern as you say is if htlv causes leukaemia. Or what ever this is.

So to answer your question ... Why is there limited traction, I think the first step is finding a dr to help with the process. Then finding a reliable test. And finally getting individuals to try different treatments.

I am very sorry many here in this forum are still in pain.

Has any one found a quality dr who they trust and believe?
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Users who thank wyomingscared for this post: TonyDewitt 

replied February 10th, 2013
Experienced User
Tony,

You are absolutely right. I had never heard of htlv. I think many of us were so concerned about hiv and our symptoms we are looking for anything to explain it.

My biggest issue is finding a dr to work with. They do not believe any of the symptoms especially if the standard tests do not point to something.

Since my initial symptoms I have improved dramatically. Primarily now just poor appetite and ED. I have been taking garlic, b12 and probiotics.

Can not say if this has helped, only that this is what I have done so far. Also I spoke to a couple of people who had a similar situation and they advised their symptoms also went away after several months.

My biggest concern as you say is if htlv causes leukaemia. Or what ever this is.

So to answer your question ... Why is there limited traction, I think the first step is finding a dr to help with the process. Then finding a reliable test. And finally getting individuals to try different treatments.

I am very sorry many here in this forum are still in pain.

Has any one found a quality dr who they trust and believe?
|
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replied February 10th, 2013
Experienced User
Hey guys, is anyone having lighter colored stools, dark eyelids, extreme fatigue, muscle pain and weakness, upper, middle, and low back pain between shoulder blades?
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Users who thank Scared49 for this post: TonyDewitt 

replied February 11th, 2013
Yes. I would like to discuss this with you. Same type of symptoms.
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Users who thank needurhlp007 for this post: TonyDewitt  TonyDewitt  TonyDewitt  TonyDewitt 

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replied February 11th, 2013
Extremely eHealthy
Scared,

I would say that your symptoms are the same ones that I and everyone else are experiencing. You previously mentioned leg pain and fingernail lines, I have that as well.

Best wishes.
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replied February 10th, 2013
Experienced User
Tony,

You are absolutely right. I had never heard of htlv. I think many of us were so concerned about hiv and our symptoms we are looking for anything to explain it.

My biggest issue is finding a dr to work with. They do not believe any of the symptoms especially if the standard tests do not point to something.

Since my initial symptoms I have improved dramatically. Primarily now just poor appetite and ED. I have been taking garlic, b12 and probiotics.

Can not say if this has helped, only that this is what I have done so far. Also I spoke to a couple of people who had a similar situation and they advised their symptoms also went away after several months.

My biggest concern as you say is if htlv causes leukaemia. Or what ever this is.

So to answer your question ... Why is there limited traction, I think the first step is finding a dr to help with the process. Then finding a reliable test. And finally getting individuals to try different treatments.

I am very sorry many here in this forum are still in pain.

Has any one found a quality dr who they trust and believe?
|
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Users who thank wyomingscared for this post: TonyDewitt  TonyDewitt 

User Profile
replied February 11th, 2013
Extremely eHealthy
WS,

Thanks for the validation! And yes, finding a doctor to work with is the BIGGEST problem. Most doctors won't even discuss HTLV, never mind work with you.

And thank you for seeing what I am trying to get the group to focus on - the possibility of leukemia / death / paralysis - this is the big picture.

I like your answer - and I hope that as a group we can follow your answer - doctors, RELIABLE testing, and trying different treatments.

I really don't think any of us will be able to find a doctor to deal with this.

But thank you for focusing on what I've been trying to get all of us to focus on - not what's immediately in front of us, but rather the end game.

Best wishes.
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replied February 11th, 2013
Extremely eHealthy
Scared,

I know how much time & money you already spent tracking this down, and I really appreciate everything you've done, especially talking to me on the phone. You know that I think this is HTLV, and unless we pursue that as a possibility, we'll never know.

NH,

With all due respect, I've spent ten thousand dollars on testing for EVERYTHING (Scared has spent more Im sure). I've can't even pay the bills for the tests I've already taken, and now bill collectors are hounding me.

Everyone,

NH has suggested that I get the HTLV Western Blot or similar test, and I think that's a great idea, but I'd like everyone on this forum to get the test, not just me. We need to know as a group how many of us are positive / negative for HTLV, and that test will look for HTLV specific proteins. I understand this takes a certain about of balls / bravery to do this, but I feel this is better than arguing as NH implied. Please reply if you are willing to do this / not do this. Again this must be Western Blot or similar test, the standard antibody test has tested negative on me 6 times, and the PCR test negative once.

Best wishes and thanks for your anticipated help.
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replied February 11th, 2013
Extremely eHealthy
Scared,

I know how much time & money you already spent tracking this down, and I really appreciate everything you've done, especially talking to me on the phone. You know that I think this is HTLV, and unless we pursue that as a possibility, we'll never know.

NH,

With all due respect, I've spent ten thousand dollars on testing for EVERYTHING (Scared has spent more Im sure). I've can't even pay the bills for the tests I've already taken, and now bill collectors are hounding me.

Everyone,

NH has suggested that I get the HTLV Western Blot or similar test, and I think that's a great idea, but I'd like everyone on this forum to get the test, not just me. We need to know as a group how many of us are positive / negative for HTLV, and that test will look for HTLV specific proteins. I understand this takes a certain about of balls / bravery to do this, but I feel this is better than arguing as NH implied. Please reply if you are willing to do this / not do this. Again this must be Western Blot or similar test, the standard antibody test has tested negative on me 6 times, and the PCR test negative once.

Best wishes and thanks for your anticipated help.
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replied February 12th, 2013
Man I am sorry to say this but this is just paranoia, you tested 6 times and did a PCR test what more do you need? did you know that the transmission rate from male to female is like 60 per cent and from female to male is 1 per cent?
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replied February 12th, 2013
Extremely eHealthy
D85,

Where do you get these statistics from? LIKE 60 PERCENT? 1 PERCENT?

Look man, everyone Ive been with since the doctor gave me my "crazy" diagnosis has gotten sick - that's 100 percent. Like NH said, put your money where you mouth is & get the Western Blot test.

Best wishes.

PS: If this forum becomes too much of a pain to use, there is a great HTLV friendly forum at forums dot phoenixrising dot me - also, the site I paid for, HTLVhelp dot com.
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replied February 12th, 2013
I read them from different sources, I will try to search again for the links and share them
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replied February 12th, 2013
"HTLV-1 can also be transmitted through sexual contact. Heterosexual transmission
is able to introduce HTLV-1 infection into previously uninfected groups. Transmission from
man to woman is more frequent (60%) than woman to man (0.4%)."

http://cdn.intechopen.com/pdfs/22399/InTec h-Human_t_cell_lymphotropic_virus_htlv_1_a nd_adult_t_cell_leukemia.pdf
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replied February 12th, 2013
Extremely eHealthy
D85,

I appreciate your link, sources, etc. But we aren't talking about HIV here, which has been heavily researched and understood. We are talking about HTLV, and like AdviseMe has said, no one in the medical industry really knows about it or cares to know about it. I have actual doctors asking ME to tell them what the window period is, and how many people are infected, including Jay Lalezari (sp), a top AIDS researcher. Dude if he is asking ME to teach HIM about HTLV, then we are in BIG trouble. Again, I put forth the suggestion that EVERYONE in this forum get the Western Blot for HTLV, and so far only WS has been nice enough to volunteer. I'm asking that everyone be HONEST about the results, including specific banding for proteins P19, P24, etc.

Thanks to everyone for your help, since I can't do this alone.
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replied February 12th, 2013
My link was concerning HTLV. and from different souces on the intenet i read it is not easily transmitted from women to men. If you have symptoms related to HTLV how can a test not detect the virus, if you have symptoms really elated to it it means you body has reacted?

Personnally the symptoms I have. the day after the fellatio I started to urinate frequently and it lasted for some time, then stopped than came back. And now it is rather ok compared to before. at 11 weeks i noticed that my tongue was a little white and sometimes was back to normal red. Also I feel sometimes mild discomfort in my upper leg area.
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replied February 13th, 2013
my link is about HTLV. "HTLV-1 can also be transmitted through sexual contact. Heterosexual transmission
is able to introduce HTLV-1 infection into previously uninfected groups. Transmission from
man to woman is more frequent (60%) than woman to man (0.4%)."

http://cdn.intechopen.com/pdfs/22399/InTec h-Human_t_cell_lymphotropic_virus_htlv_1_a nd_adult_t_cell_leukemia.pdf
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replied February 12th, 2013
ok I found the Study which looks serious, in addition I read that transmission is very low from female to male from a French website.

Here is the Link EVERYONE should read http://cdn.intechopen.com/pdfs/22399/InTec h-Human_t_cell_lymphotropic_virus_htlv_1_a nd_adult_t_cell_leukemia.pdf

Look at page 30: "HTLV-1 can also be transmitted through sexual contact. Heterosexual transmission
is able to introduce HTLV-1 infection into previously uninfected groups. Transmission from
man to woman is more frequent (60%) than woman to man (0.4%)."

So guys please try to relax with regard to HTLV or do a test. I was also stressed about it but after reading I got calmer and I may do a test just for peace of mind.
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replied February 11th, 2013
Extremely eHealthy
Scared,

I know how much time & money you already spent tracking this down, and I really appreciate everything you've done, especially talking to me on the phone. You know that I think this is HTLV, and unless we pursue that fully as a possibility, we'll never know.

NH,

With all due respect, I've spent ten thousand dollars on testing for EVERYTHING (Scared has spent more Im sure). I've can't even pay the bills for the tests I've already taken, and now bill collectors are hounding me.

Everyone,

NH has suggested that I get the HTLV Western Blot or similar test, and I think that's a great idea, but I'd like everyone on this forum to get the test, not just me. We need to know as a group how many of us are positive / negative for HTLV, and that test will look for HTLV specific proteins. I understand this takes a certain about of balls / bravery to do this, but I feel this is better than arguing as NH implied. Please reply if you are willing to do this / not do this. Again this must be Western Blot or similar test, the standard antibody test has tested negative on me 6 times, and the PCR test negative once.

Best wishes and thanks for your anticipated help.
|
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replied February 11th, 2013
Extremely eHealthy
Scared,

I know how much time & money you already spent tracking this down, and I really appreciate everything you've done, especially talking to me on the phone. You know that I think this is HTLV, and unless we pursue that as a possibility, we'll never know.

NH,

With all due respect, I've spent ten thousand dollars on testing for EVERYTHING (Scared has spent more Im sure). I've can't even pay the bills for the tests I've already taken, and now bill collectors are hounding me.

Everyone,

NH has suggested that I get the HTLV Western Blot or similar test, and I think that's a great idea, but I'd like everyone on this forum to get the test, not just me. We need to know as a group how many of us are positive / negative for HTLV, and that test will look for HTLV specific proteins. I understand this takes a certain about of balls / bravery to do this, but I feel this is better than arguing as NH implied. Please reply if you are willing to do this / not do this. Again this must be Western Blot or similar test, the standard antibody test has tested negative on me 6 times, and the PCR test negative once.

Best wishes and thanks for your anticipated help.
|
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User Profile
replied February 11th, 2013
Extremely eHealthy
Scared,

I know how much time & money you already spent tracking this down, and I really appreciate everything you've done, especially talking to me on the phone. You know that I think this is HTLV, and unless we pursue that as a possibility, we'll never know.

NH,

With all due respect, I've spent ten thousand dollars on testing for EVERYTHING (Scared has spent more Im sure). I've can't even pay the bills for the tests I've already taken, and now bill collectors are hounding me.

Everyone,

NH has suggested that I get the HTLV Western Blot or similar test, and I think that's a great idea, but I'd like everyone on this forum to get the test, not just me. We need to know as a group how many of us are positive / negative for HTLV, and that test will look for HTLV specific proteins. I understand this takes a certain about of balls / bravery to do this, but I feel this is better than arguing as NH implied. Please reply if you are willing to do this / not do this. Again this must be Western Blot or similar test, the standard antibody test has tested negative on me 6 times, and the PCR test negative once.

Best wishes and thanks for your anticipated help.
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replied February 11th, 2013
Experienced User
Hi,

Why do I see a lot of double posts recently? Is it just me, or do others also see this?

Best wishes.
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replied February 11th, 2013
Experienced User
I am willing to take a western blot test. I even asked my doctor. She will not do anything probably 5 more weeks. She wants to rule out hiv at 6 months. Even though I have a dna, 12 week and 18 week negative.

Also... I would prefer a way to test anonymously via labcorp or quest.

What about the researchers who are trying to prove viruses cause cancer? We would be ideal test candidates and these drs at least might believe us.
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replied February 11th, 2013
Experienced User
I am willing to take a western blot test. I even asked my doctor. She will not do anything probably 5 more weeks. She wants to rule out hiv at 6 months. Even though I have a dna, 12 week and 18 week negative.

Also... I would prefer a way to test anonymously via labcorp or quest.

What about the researchers who are trying to prove viruses cause cancer? We would be ideal test candidates and these drs at least might believe us.
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Users who thank wyomingscared for this post: TonyDewitt 

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replied February 11th, 2013
Extremely eHealthy
WS,

Thanks for being willing to take the Western Blot test. Waiting until the 6 month mark is good idea as a timeline for testing goes.

I'm not sure about testing anonymously, but realize that even if you test positive for HTLV:

1. Your medical records will not be made public.
2. Since no one cares about HTLV, no one will make a big deal about you being positive, unlike HIV.

The medical community is fully aware that viruses cause cause through overproduction of cells - HPV, EBV, HTLV, etc all cause cancers. But we'd have to have cancer first, which is why I went to a cancer doctor last summer (no progress). But I like the way that you are thinking, since we do need to find SOME DOCTOR who believes us.

Best wishes.
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replied February 11th, 2013
Experienced User
Hi LICF/Tony/Scared and All, i am not sure if lips HTLV test is commercially viable . But some thing i would like to have at some stage. This is the only way i think we can rule this out iy has 100% sensitivity.
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Users who thank adviseme for this post: TonyDewitt 

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replied February 11th, 2013
Extremely eHealthy
AdviseMe,

I totally agree with you about the conclusiveness of the LIPS test, but if it's not available, we can't use it.

Best wishes.
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