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Certain HIV positive, but negative tests (Page 40)

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July 25th, 2012
Experienced User
Tony, have you tested for Lyme, what's your story with that, I heard its hard to get a diagnoses.
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replied July 25th, 2012
Drank you did cd4 and cd4 counts what were your results, what you will advise for me.
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replied July 25th, 2012
Extremely eHealthy
DFrank,

In addition to what I told you about Lyme, I will say that the recommendation to is to go to a Lyme Literate Medical Doctor (LLMD), since typical doctors don't know enough about Lyme (and HTLV for that matter).

Best wishes.
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replied July 25th, 2012
Extremely eHealthy
D,

To follow up on your "candida cleanse" therapy, I wanted you to know that "candida cleanse" is mentioned on the HealingWell site's Lyme Disease forum, on their "New To Lyme" page. Also mentioned on the same page are MANY of the symptoms that we are experiencing - definitely worth reading.

Best wishes.
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replied July 26th, 2012
Experienced User
Thanks tony I will check it out. I called the doc on Monday again and didn't hear back yet. One chance , I have not had my cd 4 or cd 8 counts checked yet, but will ask next time I see the infectious disease doctor, and will let you now. At least your counts are high and not low, so with all the HIV tests you've had, think you can for sure rule out HIV like tony said. From what I understand these numbers can fluctuate often, and high numbers can mean you have some infection, but not HIV. And also they say that stress can also effect these numbers. Don't get me wrong I think you have some kind of infection as the rest of us, but the stress of it all can make it worse. Still feeling good, and on the diet and supplements. Depressed and scared, how you guys doin? Keep us posted. Tony I will talk with my infectious disease doc about Lyme, but hopefully I can find a Lyme specialist. Doubt there are to many or none in Hawaii. I did travel to Colorado and canada for fishing trips ??? Don't know but will investigate. Will keep you posted on my results as I get them.
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replied July 26th, 2012
Drank & tony, I went my Gp today with my privately tested results of CFS, she said my EBV is previous infection, I showed my cd4 & cd8 counts, she said I do not know how to interpret these results, so she said she want to refer me infection desese Dr, with these reports, she asked me if I had HIV test and I said it is negative 24 times in 7 month.
I also went st. Merry hospital for HTLV result, they said that is negative, and they can not do any more test for me, because I am 7 month negative, they said not to come back for any test, because window period is 3 month, I also went gum clinic with my cd4 & cd8 results, but they refuse to test me again for HIV and refuse to coment on cd4 & cd8 count, they said we did not order cd4 & cd8 counts so we can not comment on that, if you are HIV antibody test negative 7 month so you do not have HIV.
So drank & tony I do not have HIV , HTLV, CFS, so what I have?
2, why my cd8 are too high?
I read that stress can increase cd8 + tcells, but can stress can gave allot of symptoms I do not know?
3. You know I am married man what should I do now? I can not stay away from my wife any more otherwise she think I do not love here any more, my family is suffering too, how you guys maintaining your lives, plz help me.
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replied July 26th, 2012
Extremely eHealthy
DFrank,

You're still the beacon of hope for the rest of us, since you've been sick almost three years and are starting to feel good. Common sense dictates that we all should at least try to follow your diet & supplements, on the hope that we will feel better too.

Lyme is unfortunately the red headed step-child of infectious diseases, just like HTLV. The similarities between HTLV & Lyme are:

(1) Doctors don't know how to accurately test for either of them.
(2) Doctors don't know what specific symptoms to look for in either of them.
(3) Doctors don't know how to effectively treat either
of them.

I'd like to hear from the forum members outside the USA to see if Lyme occurs in their areas as well. Since we all got sick through sex, the only way that this could be Lyme is if it was possible to transmit Lyme sexually - that's still a very controversial topic. Although they have detected Lyme in sexual fluids, they won't say for certainty that it's transmissible sexually. If you read the page that I mentioned, Lyme symptoms match MANY of the symptoms that we're experiencing, and if we could have gotten it through sex, that could be our problem.

The bottom line:

(1) None of us have HIV - no way, no how.
(2) We could have Lyme or HTLV, both of which are hard to test for, diagnose, and treat.
(3) Following DFrank's diet & supplements might help us feel better.

Questions:
(1) Are any of us feeling better, feeling worse, feeling the same?
(2) Since we've all mentioned spouses & sex partners, how many of them are sick and how are they doing?
(3) Are any of us willing to try DFrank's therapy?

DFrank,

I know that you said that you have good medical coverage, and I know this is a big favor to ask of you, but could you get a PCR test for HTLV please? Since Sadowsky wrote that this is the only conclusive test for HTLV, I was hoping you'd be able to get this test done please.

Thanks for everything you've done to help us.

Best wishes.
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replied July 26th, 2012
Tony & dfrank, you didn't reply my last post, dfrank plz tell me your diet and supplements, and for everyone who is feeling sick long time with negative results if they are married or having partners, how you guys maintaining your lives, are you guys not scary to gave this problem to your partners or not, plz read my both posts and reply me, st merry hospital htlv dept refuse me to do any test after 7 month then y you guys are still worry for HTLV? Who ever say on research that only PCR test can find HTLV is he or she is a doctor or like us?
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replied July 26th, 2012
Extremely eHealthy
onechanceplz,

We are *all* in the same boat, and yes, I have days when I completely go crazy about this - today is not one of those days thank God.

Yes, I am worried about giving this to others, and yes, I have have guilt about the dozen others that I've given it to.

Yes, I am still worried about HTLV - Sadowsky on TheBody site (he works for the department of health for the State of Nevada, where I'm sure many STDs exist) wrote that the HTLV antibody test is NOT conclusive. You can look up his notes on HTLV, where he said only PCR testing is conclusive.

My advice to you is to take the PCR test for HTLV, even if you have to PAY for it yourself - look on the web to find a lab that is willing to perform this test.

Best wishes.
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replied July 26th, 2012
Tony thanks to tell me more about u, but if you think because of you some people get the symptoms, so why you do not ask them to do test for HIV or HTLV, you said some people never develop htlv antibodies but it's not for everyone so if you didn't develop antibodies what's about others you had sex they have symptoms, did they not build antibodies too?
You said once you already tested htlv PCR test you were negative and you said in your last post PCR for HTLV is conclusive so why you not trust on PCR for HTLV?
You ask me to do PCR test for htlv, but no one offer PCR test in whole uk, I try to search but could not find any, only st. Merry hospital london can do PCR test but they said if you are htlv antibody test negative we do not do PCR test, I have all 100% symptoms with cd8 bad results but still they even refuse me to do any more even antibody tests for htlv, they said we are doing research on htlv and window period is 3 month, I should belive on st. Merry hospital not the Internet , they said my 7 month htlv negative so we are closing my file no more test needed.
Now I am hanging in the air, they said I need mental help, they think I am crazy, and wasting their time and mony.
I am more then happy to pay for test, PCR htlv, but no one even private labatories not offer this test, even 99.9 % people do not know what is htlv?
So thats all my story, now you tell me what should I do.
DFrank you r sick from 3 years what your dr think about u, do they think you r fine or not 3 years are long time why not you do your cd4 & cd8 counts if they are fine I think you should stop worring, you can not waste your whole life worring that you have HIV or htlv or etc.
I know I had and have symptoms but how long I investigate about that, I paid 300 for cd4 &cd8 counts but no one even want to interpret that test, if someone know any place in uk were I can test htlv PCR so plz let me know, I am hopeless , my life, my job, my family everyone suffering, dfrank I do not know how you dealing all these, you might be a brave man, who handle all this for up to 3 years I might die before three years if I keep feeling sick, and wonder of HIV , HTLV or any other serious deseas, God Bless us all, and forgave us for our mistakes.
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replied July 26th, 2012
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onechanceplz,

All of us on this forum are living a strange life - we all know that we are sick, but no one will believe us, and furthermore, I (and others) have been told to see a psychiatrist. This is as much a nightmare for the rest of us as it is for you. Look at what DFrank has gone through for the past three years, and others too.

We could be the tip of the next big epidemic, but for now we are the crazy people whose "anxiety" is causing our "illness". Maybe someday people will look back at us and say "we shouldn't have ignored those guys, they were trying to tell us that something is out there spreading like wildfire".

I gave this to over a dozen others, and at least three of those others are very sexually active, and they are going to give it to hundreds of people. There is nothing that I can say to these people to make them believe that I have something, or that I gave them something, until something shows up on my testing, it's that simple. I am going to continue to test for HTLV every two months until something turns up. I am also going to find a Lyme specialist to see if I have that. That's all I can do. If I lose my ability to walk in the meantime, that would be terrible. If I get cancer in the meantime, that would be terrible too. But without a test or a doctor backing me, I am in limbo, just like we all are. We should all keep in touch either here or on the HTLVhelp site in case one of us is unfortunate enough to progress to worse symptoms. I think it's important for all of us to know each other's ongoing health.

If you look on the internet, you should be able to find a private lab that will do HTLV PCR testing. Also consider testing for Lyme. That's the best diagnostic advice I can give you.

Best wishes.
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replied July 27th, 2012
Experienced User
Tony I will ask for the HTLV test and see what he says, will copy the article from that doc you suggested that only pcr tests are accurate and show it to him. One chance all my supplements and info I provided on the bottom of page 37, so check it out.! Let me say this , I felt the worse of the worst, felt like I was dying. To the point I would try and prepare for work with pain killers and stretching, and then would just say f- it and tuff it out. Any normal person that felt the way I did in the morning would have immediately called into work and went straight to the doctor, but I tried that and didn't work. So just kept trying different things, luckily I found out about candidia and the supplements and diet regimen have helped me greatly. Like i said iam not

sure that is my underlying cause of my illness, but the therapy is working. I will still be



investigating the cause of my illness until I get answers. Will not accept the docs protacal of your depressed or anxiety, cause I tried that treatment protacal, and it didn't work. So don't let them push you away and say your crazy. Some thing is ailing us, and will eventually surface. So keep trying, and if you have exhausted one doctor then move to the next.
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replied July 27th, 2012
Experienced User
One chance, should check out my previous posts, I was closer to death than any of us that I know of, but decided to hang in there and fight. I was like you scared, hopeless, and worried that I may have given this to other people. Also my girlfriend is still having some symptoms like I had in the beginning, stomach pain and dizziness. Not as much, but also she has not been as strict on the diet as I am. The wired thing is when we were on vacation. We really didn't have hardly any symptoms. And she said she ate whatever and drank whatever the second half of the two weeks after I returned home after the first week. So we still have not completely ruled out environmental things either,'but anyway will keep you guys posted. Good luck and hang in there! I'm not sure how you want to handle with your wife wanting to have children ( unprotected sex) but seems like the docs have checked you for the major diseases and nothing, but that something you have to decide.
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replied July 27th, 2012
Extremely eHealthy
OneChance,

Please give serious thought to what DFrank wrote - he was through the worst of this, worse than any of us, and he's learning to live with it and get better. Same point regarding his spouse - they are dealing with the illness. That doesn't mean that you're not allowed to be upset about it, it just means you can't give up. If you are serious about having a baby, I would recommend that you not breast feed - HTLV is supposedly spread from mother to child that way, just like HIV.

Here's a copy of the article from TheBody written by Sadowsky regarding HTLV for future reference:

Thank you for your question. The following is a GENERAL review comparing when tests will detect infection with Human T-Lymphotropic Virus Type 1 (HTLV-I) infection, and when symptoms from this virus generally appear. HTLV-I is a different virus than HIV, and HTLV-I does not cause AIDS. You will also note that the testing times associated with this virus, and the times when symptoms arise, are different from those of HIV.

Testing

Antibody testing and PCR tests = These are different tests than HIV antibody tests and HIV PCR tests. Antibodies against HTLV-I are often produced by 40 days after infection, with a range most commonly between 20 days to 90 days. Some people may take longer than this to show positive. For example, some people may take up to 6 months to show positive, and one study even suggests that it in some people, it may take years for detectable antibodies to develop. Therefore, if a person is showing symptoms possibly due to HTLV-I (see below), but they test antibody negative, then special tests can be done (most often PCR tests) to make a diagnosis of HTLV-I. Because of the difficulties in doing PCR tests (high cost, very time consuming, occasional false-positive results, etc.), PCR tests are not recommended for routine screening of HTLV-I. But PCR tests can be used in persons who are suspected of having an HTLV-I associated illness, but test antibody negative.

Symptoms

In some people, HTLV-I causes "HTLV-I Associated Myelopathy/Tropical Spastic Paraparesis" (HAM/TSP), a neurological disorder. In other people, HTLV-I causes "Adult T-Cell Leukemia" (ATL), a cancer of the immune system. Occasionally dermatitis, joint disorders and various other problems have been associated with HTLV-I as well, but HAM/TSP and ATL are the most common HTLV-I related disorders. Luckily, most people do not get these diseases, and most do not show any symptoms of infection. HAM/TSP = Symptoms of this neurological disorder generally appear 3 to 5 years after infection. Symptoms can include limb weakness, inability to control your bladder (incontinence), impotence, lower back pain, a tingling pins and needles sensation, and other neurological symptoms. It is estimated that less than 1% of people with HTLV-I will develop this disorder.

ATL = Symptoms of this form of leukemia most often appear 20-30 years after infection with the HTLV-I virus. It has been estimated that up to 5% of people with HTLV-I will get leukemia. Symptoms of ATL include swollen glands, an enlarged liver, abnormal liver function tests, an enlarged spleen, skin lesions, bone lesions, and sometimes an increased level of calcium in the blood. Because leukemia damages the immune system, opportunistic diseases may be seen as well. Once ATL has been diagnosed, the life expectancy is often less than a year (although some people may live longer). So although ATL may not begin until literally decades after infection, this form of leukemia can kill a person within months after the symptoms begin.

In summary:

You will note that most people who have HTLV-I do not show any symptoms at all. And even when symptoms of HAM/TSP and ATL are seen, they are similar to the symptoms of many other illnesses. Therefore having these symptoms alone does not indicate infection with the HTLV-I virus. HTLV-I (and the illnesses associated with this virus) can only be diagnosed by a doctor through various laboratory tests.
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replied July 27th, 2012
Extremely eHealthy
I don't know if you've seen the news, but they claim to have cured two more people of HIV using chemotherapy & a bone marrow transplant. This was the same approach used in the treatment of the patient in Greece who was cured of HTLV. So interestingly, both HIV & HTLV (retroviruses) are treatable and curable using the same approach (chemotherapy & bone marrow transplant).
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replied July 27th, 2012
Tony your risk is 8 month now, what symptoms you still have, yo already tested HTLV 1/2 PCR negative, why not you & specially Dfrank do CD4 & CD8 counts if you do CFS profile test that will be batter it might possible you guys have mono or CFS and you can know with cd4 & cd8 where is you immune system and how is working?
I start getting rashes after 10 day of risk, and then get every single symptom of HIV , HTLV, EBV, Mono, CFS, me, and allot more.
Tuesday 24th, I tested insti HIV insti 1/2 & 4th generation HIV 1/2 both come back negative .
Today I ask private lab if they can do PCR test for HTLV1/2 they said they can but 365.00 for test, I tested antibody htlv1/2 negative on 19/07/12, now thinking when I go for PCR test right now? Or after a month or two latter? What you guys advise me.
I still have oral problems, and no energy in my legs, and specially in night time my legs hits allot, I can not sleep due to soreness of my legs, I can not stand or walk longer, now my Lowe back pain is batter, but still some time getting shingles rash whic come and disappear after 30 minutes time, God bless us all.
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replied July 27th, 2012
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onechanceplz,

DFrank's testing is entirely up to him, I don't know what a CD4/CD8 count test is going to prove for him, me, or you for that matter. I had mono about 20 years ago, and as bad it as it was, it is a picnic compared to what I am going through now. My ongoing symptoms are stiffness and pain in my lower back & legs, which sounds like HTLV, but could also be Lyme.

As far as HTLV testing is concerned, there's no consensus on when to test, how to test, etc. I've exchanged emails with doctors and test labs on the topic and no one seems to know. DFrank is a special case because he's three years out on this, so he has a greater chance of finding problems (and solutions).

Again DFrank, thanks for letting us impose on you in this sense. We would all be much worse off without knowing that someone like yourself has been dealing with this for such a long time.

Best wishes.
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replied July 28th, 2012
Experienced User
Hey guys google " sore throat/mood virus". And also " waking up feeling hungover without drinking and tell me what you think.
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replied July 28th, 2012
Experienced User
I don't know what to think or believe anymore, or who to trust, but I just came from thebody.com. All the doctors were some dr's. said that htlv is an old term for hiv, and other dr's. said that htlv has only been found in japan. Plus they said that htlv in the U.S is very uncommon, which means that hardly anybody has htlv that is living in the U.S. go to www.thebody.com, and type in htlv in the search colom. I just don't believe that we're dealing with htlv. It maybe something else simler to hiv, but I don't think it's htlv. Maybe it's an STD that no one has heard of, or maybe the hiv tests aren't detected the hiv antibodies like it's supossed too. I still keep coughing up white mucus, and I don't have a sinus infection, cold, or flu.
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replied July 30th, 2012
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DFrank,

Interesting stuff on "sore throat/mood virus" and "waking up feeling hungover without drinking" - I certainly feel that way when I wake up. One poster wrote that Candida can produce alcohol, which can result in that hungover feeling. But again we have to ask ourselves are we only experiencing a system Candida infection, or is an underlying immune suppression allowing the Candida to thrive in our bodies?

Best wishes.
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replied July 30th, 2012
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I wrote to Dr. Jay Lalezari, who is a leading HIV / AIDS researcher, regarding the lack of research & treatment for HTLV, here's his reply:

Sorry, but we haven't done any work on HTLV. I have never heard that 25 million people are infected with it?
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