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Certain HIV positive, but negative tests (Page 117)

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February 14th, 2015
Experienced User
looking for answers
hi tony an jammy, have been trying to find out about htlv, theres not a lot of info on it, other then its mostly in the poorer countries an therefore big pharma has little interest, i was hoping you guys could answer some questions i had, god! i hope this is not what i have, have tested the heck out of hiv 11 times in 13 months, so im done with that an no one in town will test me for it anymore, hep a,b,c 4 times lymes desease cmv,ebv, an all the normal stds all neg, so im looking for answers, my doctors told me they don't know what to test me for an don't know where to start, what a joke an they take your money an say have a good day, one gave me pills an said take these for 2 weeks if you still have problems then good luck. they just don't care so its up to me to figure this out,it very well may be htlv,this lady was from w Virginia where all the bases are an decease comes in there from everywhere, have the gray/white tongue so its messed with my immune system ringing ears just started stomach problems red eyes, stiff neck dry skin, stools all wrong, is what i have now.
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replied February 15th, 2015
Experienced User
Hi therider,

Sorry for your illness. I can tell, these are all autoimmune reactions to an infection. Finding the cause will be really hard. At the moment, just focus on treating symptoms. The list TD has provided is very useful, so you might want to consider it.

Best wishes.
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replied February 15th, 2015
Experienced User
I really believe its htlv an where I live the doctors have not even heard of it, they all check for the normal stds an if neg for all that which I am that's as far as they go,where can I find this list td has jammy, like to read that, I was reading back to 2012 in here an you had posted all of these unheard of stds I checked them out an I don't believe I have them from my symptoms,but it was really helpful, man I had no idea how much desease you can catch from an encounter with someone, an my sex was protected,but when you get close to someone with something who knows, I know one thing im going to keep riding til the end.
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replied February 16th, 2015
Experienced User
Vitamins B1-B6-B12 are highly suggested for treating HTLV infection, together with other antivirals - such as Lysine, Vit.C, etc… Please go back to page 116, where TonyDewitt has posted an appropriate list of supplements which are worth taking.
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replied February 16th, 2015
Experienced User
Please consider testing for Brucellosis, too. I'm not saying that you have this bacteria, but it's better to exclude every possibility.

Best
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replied February 16th, 2015
Experienced User
thanks jammy I will im really unsure whats going on an the doctors wont, help me the caring has gone out of medicine. when I hear my doctor say what do I test for? I don't even know where to start, tells me he don't care, an takes my money an does not do his job. I really appreciate the help.
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replied February 17th, 2015
Experienced User
has anyone gotten or knows how to,get rid of there stiff sore neck pain? been over a year, I feel fine just have a grey/white thin coat on tongue in morning that brushes off, neck feels fine in morning starts to stiffen in afternoon,an these ears ring thank god its tolerable just alittle background noise an you cant tell they are ringing except for when I go to bed, otherwise I have always felt good energy high no pains, hope the bottom don't fall out on that knock on wood.
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replied February 17th, 2015
Experienced User
therider,

for ear ringing try 3-5g melatonin before bedtime. Stiff neck can be'treated' with vitamin B/C, Curcumin and Lysine. Omega 3 can help too.

Best
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replied February 19th, 2015
Extremely eHealthy
J,

Great supplement suggestions, thank you. Also please note while everyone is free to test for everything, some of the things that you might test positive for are a result of the immune suppression. In other words, they are SYMPTOMS of a larger disorder, not the actual cause of you being ill. Many people here had celebrated finding out that they had test positive for common infections, only to realize later that once they treated those common infections, the underlying sickness was still there.

This is a very complicated disease, Im sure if we made a list of every disorder it causes, that list would be over a hundred entries long, everything from thyroid problems to salivary problems to paralysis to every cancer, lymphoma and leukemia possible.

Best wishes.
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replied February 19th, 2015
Experienced User
jammy you are awesome! thanks again for the help, it means a lot,i just noticed my knees crack a lot when I move them up an down,something new, an something new my tongue must be swelling I have teeth marks on tongue,some things go away others appear it just don't stop,i still feel good an no pain, jammy I saw a article new highly contagious hiv like mystery virus in china it infects all things with a backbone, even cows, pigs,dogs,cats my people are wearing masks they say salvia can infect people as well,with this, guy was talking about his knees cracking an I thought my god, you will not test pos on a hiv test with this they say, the doctors are saying these people are nuts, but its wiping out families.let me know if you have heard about this an your comments, thanks again
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replied February 20th, 2015
Experienced User
hi pal,

yes, I know about HIV-like Chinese virus… I'm sure I don't have it, but it's a terrible disease leading to cancer. It will take decades for scientists to isolate this pathogen. Meantime, a lot of people will keep dying.

You're welcome for the support - we're all in the same boat, so I'm glad I can at least help somebody. I've felt pretty useless since I got this disease.
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replied February 19th, 2015
Experienced User
I'm upset I stopped getting emails telling me when you guys post! WTH?!
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replied March 4th, 2015
Experienced User
hey pal,

Haven't heard from you in a while. How ya doing mate?

Best
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replied February 20th, 2015
Experienced User
Hi guys,

concerning my moles - which I was telling you about last week - the situation is getting worse.

I'm afraid I could have mastocytosis, which is a pre- cancer-leukemia disease… of course Htlv would fit perfectly in it.

I'm going to my GP today and probably will ask to get tested for tryptase level in my blood.
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replied February 20th, 2015
Experienced User
I had a long talk with my GP, and she said mastocytosis is a good hypothesis. So we'll test for it - although she said the test is not always reliable.

She also told me to repeat the infectious and rheum. diseases tests. She hopes that something comes back positive in the next months.

FYI, she also said that mastocytosis is usually virally-induced. Even for that, treatment usually include interferon / corticosteroids. She is not really in favor of immune suppressors, that's why she hopes that some infections come up positive. But I'm losing the hope…


PS: mastocytosis is usually associated with myelodysplastic syndrome, what a coincidence !
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replied February 20th, 2015
Extremely eHealthy
J,

I'm glad that you are smart enough to connect the dots between neoplastic disorders and HTLV - unfortunately, most doctors cannot. Speaking of anti-neoplasticity, a cell protective compound called cepharanthine, an alkaloid from stephania cepharantha hayata, has been used in Japan, you might want to see if it's available to you.

Best wishes.
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replied February 20th, 2015
Experienced User
JAMMY!you my friend are far from useless so get that thought out of your head, I m going to put you on my pray list. I have a lot of healthy friends with cancer as well, one never knows either way, keep that chin up,was out in garage today its only about -20 below here getting new whitewall on Harley 3 more months it rolls again, rode til end of dec this yr,cold don't stop me need good roads,i will ride nothing is stopping that from happening, an when I do, all worries vanish, jammy I hope to inspire you to do the same. tony sure had a good post on people thinking they have a certain decease to find it was the result of something bigger, being a new here I too found myself wishing I had just a candida infection to kill it an find theres something more, I was in shock when reading that article on mystery virus in china, its like a cancer flu going around, now this lady I had protected with is from Virginia by all the naval bases which scares me because this could be anything,could have come from most anywhere,so ive opened up my search worldwide, im searching to see where our navy all travels what ports, that's how I found that article the story behind the story,an with our northern an southern borders in us now open who knows what else is here, god if I knew then what I have learned now, I would have run for my life that night. Fact is there is a lot of deseases floating around out here just waiting , everyone be aware!!
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replied February 21st, 2015
Experienced User
Thank you my friends for your kind words of appreciation.

I got recently insulted in other websites, so that's a nice relief. You know what I mean, cuz we are all living a nightmare. One day we'll get better, I promise.
I'm not letting you guys end up crippled or dead with cancer. It's time to act, to do something and share all the knowledge we have. That's the only way to win this.

Yesterday at lunch I had a big cry with my parents; they perfectly know what I'm going thru - and I'm pretty sure they're infected too, but I don't wanna think about it too much because it's a huge thing for me.
It's still a difficult time, but you guys help me to have hope. It means a lot.

Have a Good weekend everybody,

J
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replied February 21st, 2015
Experienced User
Jammy its better to let feelings out then keep them in,Ithink everyone has these moments in time of a serious health crisis.I was doing more research an I fell off my chair,do you know there are 5 strains of htlv?,an siv,an stlv,5strains, an ptlv 3 strains there are cancer flu type viruses everywhere, they are eating all this so called bushmeat an get the virus then the family all has it then our service guys port there an of course do what they do an these viruses end up in the states,in our people who then travel around speading them,an before you know it we them them half a globe away, an there bodies are more adapted to the virus then ours from the generations ours are not, if anyone has info I these stlv,ptlv,siv, type strains I would like to hear it, I cant believe all the decease im finding I could have anything I bet theres no test for a lot of this,jammy I want to mention too, go online an read about the bob beck program, I use it an it helps me a lot, esp with energy, study it let me know what you think I also use the silver, an I make it at home never get sick!, been outside most of the day snow blowing we have a sunny 26 degree day awesome fresh air just sun on the face an fresh air in the lungs can do wonders for ones mood jammy,so when feeling bad go for a walk in the woods, or park with some good tunes an you will feel better,your still a player in the game of life, hold onto that.
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replied February 22nd, 2015
Experienced User
hi pal,

you're definitely right, there's no reliable test for our condition and we can't 100% be sure of what we have - which is very scary. I believe I'm infected with an unidentifiable retrovirus, very similar to HTLV, or maybe HTLV itself. I'm very convinced this is my case, but I know I will probably never be able to prove it. I guess I'll die before having the opportunity to demonstrate the root cause of my disease.
I hope posting on the net about my condition can help future generations, and possibly some good Doctors - who actually care about patients' health more than average. I want to believe there are still good people on this Earth. I hope I'm not wrong.
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replied February 22nd, 2015
Experienced User
Here I copy and paste from another website:

A reply from an institute specialized in HTLV to a patient showing clear symptoms of Sjogren's Syndrome after a sexual encounter, testing negative to all STDs:

Dear xxxx

Sorry to hear about your xerostomia.
Your results for HIV are all clearly negative and supported by the normal CD4 and CD8 counts.
You have had one HTLV screening test which is negative. This was done many months after the sexual contact that concerns you and therefore should have been positive if you had been infected with HTLV-1 at that time (or before).
You may be aware of a literature relating to Sjogren’s Syndrome and detection of DNA sequences that resemble the HTLV-1 Tax gene, in the absence of HTLV-1 antibodies. It is not clear whether this is a true finding but it might in your unusual case be worth pursuing. Also, have you undergone biopsy of a salivary gland?
In the first instance I would suggest repeating the HTLV serology - with a different assay, if that is still negative then requesting HTLV-1 DNA PCR (using primers that amplify the Tax gene) would be the next step to exclude the possibility described above.
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replied February 22nd, 2015
Extremely eHealthy
J,

I had mentioned the PCR test with tax primers on this forum over a year ago as a medically published test, but at the time the people on the forum refused to accept that.


Best wishes.
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replied February 22nd, 2015
Experienced User
INTERESTING ARTICLE FOR THOSE OF YOU EXPERIENCING SICCA SYNDROME SYMPTOMS:

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Is Sjgren's syndrome a retroviral disease?
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Nikolaos V Sipsas*, Maria N Gamaletsou and Haralampos M Moutsopoulos

* Corresponding author: Nikolaos V Sipsas [email protected]

Author Affiliations
Pathophysiology Department, Laikon General Hospital and Medical School, National and Kapodistrian University of Athens, Mikras Asias 75, Athens - 11527, Greece

For all author emails, please log on.

Arthritis Research & Therapy 2011, 13:212 doi:10.1186/ar3262

The electronic version of this article is the complete one and can be found online at: http://arthritis-research.com/content/13/2 /212


Published: 13 April 2011
2011 BioMed Central Ltd
Abstract
Circumstantial evidence suggests that retroviruses play a role in the pathogenesis of Sjgren's syndrome. Such evidence, derived from studies of patients with Sjgren's syndrome, includes the following: the presence of serum antibodies cross-reactive with retroviral Gag proteins; the occurrence of reverse transcriptase activity in salivary glands; the detection of retroviral antigens, retrovirus-like particles, or novel retroviral sequences in salivary glands; the occurrence of Sjgren's syndrome-like illnesses in patients having confirmed systematic infections with retroviruses such as human immunodeficiency virus-1 (HIV-1) and human T lymphotropic virus type 1; and the beneficial effect of anti-retroviral treatment on the occurrence of HIV-1-associated sicca syndrome. Additional evidence is provided by animal models.

Introduction
Sjgren's syndrome (SS) is a chronic disease affecting mainly the exocrine glands, but any organ or system of the body can be involved. SS can occur alone or in association with other autoimmune rheumatic diseases. A great deal of evidence supports the autoimmune nature of the disease: aggressive tissue infiltration by lymphocytes, a plethora of circulating autoantibodies, antibodies that cross the placenta and induce disease in the fetus, female preponderance, familial clustering with other autoimmune disorders, a strong association with specific human leukocyte antigen (HLA) alleles, and common clinical features with other autoimmune rheumatic diseases, such as arthritis, Raynaud phenomenon, and serositis [1]. Therefore, researchers characterized SS as autoimmune epithelitis [2].

SS is characterized by lymphocytic infiltration of the exocrine glands, such as salivary and lacrimal glands, where lymphocytes are not normally found. Lymphocytic infiltration leads to glandular dysfunction and the main clinical manifestations of SS (that is, oral and ocular dryness) (xerostomia and keratoconjunctivitis sicca). About 30% of patients with primary SS develop extra-glandular manifestations, including Raynaud phenomenon, peripheral neuropathy, vasculitis, hypergammaglobulinemic purpura, and hyperviscosity syndrome, as well as involvement of thyroid, lungs, kidneys, and liver. The worst outcome in a lymphocytic infiltrative disorder, such as SS, is the development of a lymphoproliferative disease, especially B-cell lymphoma, which occurs in approximately 5% of patients with SS. Anti-nuclear anti-bodies and various serum autoantibodies, such as anti-SS -A (Ro) and SS-B (La) antibodies, are usually detected in patients with SS [1].

The pathogenesis of primary SS is a multi-factorial process leading to damage and dysfunction of the exocrine glands and other target organs. Environmental factors (such as a viral infection) affect the exocrine glands and stimulate dendritic or glandular cells to activate the HLA-independent 'innate immune system', which uses Toll and Toll-like receptors that recognize pathogen-specific epitopes. This process leads to up-regulation of adhesion proteins and production of chemokines by the local epithelial cells, which become activated and act as antigen-presenting cells [3]. Lymphocytes migrate into the gland in response to chemokines, adhere to vascular adhesion molecules, and interact with dendritic and epithelial cells. Local production of cytokines, especially type I and type II interferons (IFNs), leads to perpetuation of the immune response and continuous stimulation of T and B cells, which may lead to gene mutations in B cells and lymphoma development. Overproduction of immunoglobulins, production of autoantibodies, and memory lymphocytes are also consequences of the aberrant activation of cellular immunity. Subsequent activation of tissue damage mechanisms, such as apoptosis, results in chronic inflammation of the affected glands, fibrosis, and loss of normal function [4].

Viruses can trigger autoimmune reactions in both humans and experimental animals through several mechanisms. The most important mechanisms are the virus-induced neoantigen expression, the molecular mimicry between viral and host antigens which results in the production of autoantibodies or cytotoxic T-cell clones (or both) targeting host tissues, and finally abnormalities in cytokine production which are caused by the viral infection. Although the etiology of SS is multi-factorial, it appears that environmental factors trigger the syndrome in genetically predisposed individuals. Viral infections are the best candidates for the role of environmental triggers, and a number of observations support this notion [5]. For instance, the La/SSB antigen is increased in the nucleus, cytoplasm, and cell membrane of cells infected by viruses. The La antigen, a target of autoantibody production in SS, is involved in processing viral RNA. Similar increased concentrations were observed in acinic and conjunctival epithelial cells of patients with SS but not in healthy controls or patients with rheumatoid arthritis. Recent studies revealed a major role for activation of the type I IFN pathway in the pathogenesis of SS, as evidenced by the increased circulating type I IFN activity and an IFN 'signature' in peripheral blood mononuclear cells and minor salivary gland biopsies from these patients, a finding that further supports the idea of viral involvement in SS pathogenesis [6]. Early studies pointed to Epstein-Barr virus and cytomegalovirus as the triggering agents of SS. During the last decade, retroviruses [7] and enteroviruses [8] came into the spotlight.

Retroviruses are capable of infecting cells of the immune system, leading to destruction or stimulation of T cells, increased production of antibodies, and ultimately to heavy immunosuppression, making the patient vulnerable to opportunistic infections and malignancies, such as lymphomas. Several lines of epidemiological, serological, and experimental evidence have suggested that retroviral infections - especially those due to human T lymphotropic virus type 1, human immunodeficiency viruses (HIVs), human intracisternal A-type retroviral particle (HIAP-I), and human retrovirus-5 (HRV-5) - are implicated as the triggering factors for the development of SS (Table 1). The aim of this review is to summarize the existing data on the role of retroviruses in the etiopathogenesis of SS and delineate possible implications for the development of more effective treatment strategies.

Table 1. Studies providing evidence on the role of retroviruses in the pathogenesis of Sjgren's syndrome
Human T lymphotropic virus type 1
Human T lymphotropic virus type 1 (HTLV-1), the first human retrovirus to be discovered [9], causes two usually fatal diseases: adult T-cell leukemia/lymphoma [10] and HTLV-I-associated myelopathy (HAM) [11], the latter of which is also known as tropical spastic paraparesis. HTLV-1 is endemic in southern Japan, the Caribbean, South America, the Middle East, and southern Africa and is estimated to infect 10 to 20 million people worldwide [12]. Seroprevalence in endemic areas ranges from 3% to 5% in Trinidad and is as high as 30% in southern Japan [12].

In the '80 s, an association between SS and HTLV-I infection was suggested by clinical reports and experimental data from murine animal models [5]. Initial clinical reports described some HTLV-I-infected patients who had tropical spastic paraparesis and who developed an SS-like illness [13]. Another report showed the presence of an antigen reactive with a monoclonal antibody to HTLV-I p19 in the minor salivary glands of patients with SS [14].

The possible association between HTLV-1 infection and SS, suggested by these initial observations, led to serological studies for the prevalence of antibodies to HTLV-I in patients with primary SS. In a study conducted in the Nagasaki Prefecture of Japan, which is endemic for HTLV-I infection, Eguchi and colleagues [15] examined serum samples from 36 consecutive patients with primary SS and found - by enzyme-linked immunosorbent assay, particle agglutination assay, and Western blotting - that 13 (36%) were positive for antibodies to HTLV-I.

In another study, among 74 SS patients from the same area, the HTLV-1 seroprevalence rate was 23% (17/74), significantly higher than that among blood donors (3%, or 916/27,284), whereas the difference between patients with systemic lupus erythematosus (SLE) and blood donors was insignificant. Salivary IgA antibodies to HTLV-1 were common among seropositive patients with SS (5/7), and this might be due to increased viral activity in the salivary glands. These antibodies were barely detectable in patients with HAM (prevalence of 1/10) or in healthy carriers (0/11) [16]. In response to the above-mentioned report, Coulderc and colleagues [17] studied 11 patients who had primary SS and who were living in a non-endemic area (France), and detected anti-tax antibodies in 2 to 5 serum samples (depending on the technique), a finding suggesting that tax sequences of HTLV-1 might be implicated in the pathogenesis of SS. The detection of antibodies to HTLV-I proteins in SS patients from both endemic and non-endemic areas might suggest that other endogenous retroviruses are the etiological agents and that the occurrence of antibodies against HTLV-I is due to cross-reactivity between endogenous retroviral and HTLV-I proteins.

Sasaki and colleagues [18] examined the T-cell receptor (TCR) Vbeta gene usage by the infiltrating lymphocytes in the labial salivary glands (LSGs) from the HTLV-I-seropositive and HTLV-I-seronegative (idiopathic) patients with SS. The authors found accumulation of HTLV-I-infected T cells expressing TCR with a conserved motif in both HTLV-I-associated and idiopathic SS [18]. In another study among HTLV-I-seropositive patients with SS, HTLV-I proviral DNA in the LSG was detected by polymerase chain reaction (PCR) and the localization of the viral DNA in the LSG was examined by in situ PCR hybridization [19]. The cellular DNA extracted from the LSG contained full HTLV-I proviral DNA, which was present in the nucleus of the infiltrating T cells but not in the epithelial or the acinar cells of the salivary glands. Furthermore, the viral loads in the LSG were approximately 8 to 9 103 times higher than those in the peripheral blood mononuclear cells. These studies, taken together, support the hypothesis that HTLV-1 -infected T lymphocytes infiltrate the salivary glands and initiate the pathogenetic mechanisms of SS.

The association of HTLV-1 with SS was indirectly shown in another Japanese study, which reported a high prevalence of SS in patients with HAM [20]. Ten consecutive patients with HAM were studied; according to the preliminary criteria for SS which were proposed by the European Community, definitive SS was diagnosed in 6 patients and probable SS was diagnosed in 2 patients. In a follow-up study from the same investigators, definite SS was diagnosed in 13 out of 20 patients with HAM [21].

Serological studies prompted the search for HTLV-1 genes in salivary glands of patients with SS. Two groups, one European and the other Japanese, have independently confirmed the presence of HTLV-I genome in salivary gland tissue from patients with SS [22,23]. In both cases, only the tax gene was detectable, whereas pol, gag, and env genes were not present. In the Japanese study, the HTLV-I tax gene, but not the HTLV-I gag, pol, or env genes, was detected in LSG samples from 4 out of 14 patients (29%) [22]. Similarly, European investigators, using in situ hybridization and PCR, detected the tax gene, but not the gag, pol, or env genes, of HTLV-I in LSG sections from 2 out of 9 patients (22%) with SS and from none of the control subjects [23]. In a follow-up study, the same group [24], using PCR, studied LSG tissues from 50 patients with definite SS and from 58 controls (32 patients with LSG associated with other inflammatory processes and 26 patients with normal LSG). The tax gene of HTLV-I was detected in LSG from 15 out of 50 patients (30%) with SS but also in specimens from 9 out of 32 patients (28%) with LSG involved by other inflammatory processes (3/9 graft-versus-host disease, 5/19 extravasated cysts, and 1/4 sarcoidosis) and from only 1 out of 26 patients (4%) with normal LSG. A 652-base pair region, sequenced in 2 patients with SS, was 98% to 98.5% homologous to the canonic sequence of tax HTLV-I. Once more, HTLV-I gag, pol, and env genes were never detected. The findings of the European study support a non-specific role for the HTLV-1 tax gene in the pathogenesis of SS since low numbers of copies are detected also in other inflammatory processes.

Interestingly, in a report from Japan [25], an HTLV-I endemic area, HTLV-I tax sequence was detected in LSG of only 3 out of 17 seronegative patients (18%) with SS, which is unexpectedly less frequent than in patients from Europe, which is an HTLV-I non-endemic area. More-over, PCR revealed that the copy number of the HTLV-I tax in the gland tissue of these seronegative patients was very low and therefore unlikely to be sufficient to promote an inflammatory reaction in the tissue. These findings might argue against the involvement of HTLV-I in the pathogenesis of SS in Asian seronegative patients. The discrepancies between the European and Japanese studies suggest that HTLV-1, along with other environmental and genetic factors, might be a cofactor in the pathogenesis of SS.

It is possible that the failure to detect retroviral genes, other than tax, is the result of technical malfunctions or contamination issues. However, the similarity of the results deriving from two independent groups points to an alternative explanation: patients with SS were infected with a defective virus in which all genes, but tax, have been deleted. Defective HTLV-I proviruses have been shown to contribute to the pathogenesis of hematological malignant diseases, such as mycosis fungoides and HTLV-I-associated T-cell leukemia [26]. It is noteworthy that both studies, in contrast to the above-mentioned serological studies, failed to detect serum antibodies to HTLV-I in any of the studied patients with SS. The cause of this discrepancy is not clear; possibly, production of antibodies to HTLV-1 characterizes only a subgroup of patients with SS.

Human immunodeficiency virus-1
Early after the outbreak of the HIV epidemic, cases of an SS-like illness were reported among HIV-1-infected patients [27]. A few years later, the sicca syndrome associated with HIV-1 infection was defined as a discrete disease entity named diffuse infiltrative lymphocytosis syndrome (DILS) [28,29]. DILS, a disorder affecting a subgroup of patients with HIV-1 infection, is almost indistinguishable from SS, with bilateral parotid and lacrimal glandular swelling, xerostomia, and keratoconjunctivitis of varying intensity, frequently accompanied by persistent CD8 peripheral lymhocytosis and visceral infiltration by CD8+ T lymphocytes. This disorder differs from SS in that in the former the infiltrate in the salivary glands consists predominantly of CD8+ T cells (in contrast to primary SS, in which the infiltrate consists predominantly of CD4+ lymphocytes), anti-Ro and anti-La autoantibodies are seen less frequently, males are three times more likely to be infected [30], there are commonly numerous extraglandular manifestations such as lymphocytic pneumonitis, and there are different HLA associations (HLA-DR5 and DR6) [29]. The differences between DILS and SS might suggest different pathogenetic mechanisms. However, the predominantly CD8+ infiltrates in DILS might be explained by the fact that HIV-1 infection is characterized by CD4+ lymphocytopenia and a relative CD8+ lymphocytosis. The excess of males in the Greek cohort of patients is also expected since the majority of HIV-1-infected patients in developed countries are males.

The prevalence of DILS among HIV-1-infected patients differs in published studies among different ethnic groups, a finding suggesting that HIV-1, along with genetic factors, might trigger the pathogenetic mechanisms of sicca. In a predominantly male, Greek cohort, the overall prevalence was 7.79%, which is more than 2.5 times higher than that observed in normal Greek adult females [30]. In a larger cohort from the US, where different definitions and methodology were used, the prevalence of DILS was only 3% [31]. In contrast, a histological study of minor salivary glands from 164 HIV-positive or -negative patients from Cameroon or the US showed a DILS prevalence of as high as 48% in patients with HIV infection from Cameroon but of only 6% in patients from the US. This striking difference was attributed to the fact that all African patients were treatment-nave whereas 76% of American HIV-positive patients had received anti-retroviral therapy [32].

These data underline the impact of highly active anti-retroviral treatment (HAART) on the prevalence of DILS. A successful HAART reduces viral replication, viral load in the peripheral blood falls to undetectable levels, the number of CD4+ T lymphocytes increases, and finally reconstitution of the immune system occurs. In a follow-up study, the prevalence of HIV-1-related SS dropped from 8% in the pre-HAART era to 1.5% (2 out of 131 patients) after the introduction of HAART [33]. Similar data were reported in a study from the US, where the prevalence of DILS had dropped significantly in the post-HAART era [34]. This beneficial effect of HAART on the prevalence of DILS is indirect evidence that HIV-1 contributes to the pathogenesis of the HIV-1-associated sicca. If the virus per se infects the salivary glands triggering the pathogenetic mechanisms, it is quite logical that inhibition of viral replication and reduction of viral load lead to a reduction in the prevalence of DILS. However, a researcher from Italy reported that, in a cohort of 150 HIV-1-infected patients, 4 developed an SS-like illness, with positive salivary gland biopsy, 6 to 48 months after initiation of HAART [35]. In other words, an SS-like syndrome was rather a complication of HAART. These contradictory data on the e effect of HAART might reflect the complexity of the pathogenetic mechanisms involved in the sicca syndrome associated with HIV-1 infection.

Other retroviruses
The presence of a syndrome resembling SS in a subgroup of patients with HIV-1 infection was another indirect piece of evidence that retroviruses might be the triggering environmental factor for the development of SS. Therefore, there was an effort to detect antibodies to retroviral proteins or retroviral antigens or both in HIV-negative patients with primary SS. In a pivotal study, Talal and colleagues [7] performed immunoblotting against HIV-1 proteins by using sera from 47 HIV-1-seronegative patients with primary SS. Moderate-to-strong reactivity, suggesting the presence of serum anti-bodies, was found in 14 patients (30%). Of 120 normal subjects, only 1 showed moderate positivity. All 14 positive SS sera reacted against p24 (gag), which is a group-specific protein, but failed to react against gp41 or gp120 (env). Interestingly, only 1 of the 14 sera reacted against Ro (SS-A), and 1 other reacted against La (SS -B). These data suggest the presence of a subgroup of SS patients who resemble patients with HIV-1-induced SS-like disease. It should be noted that, in a subsequent study, serum antibodies to the p24 gag protein of HIV-1 were detected in 22 out of 61 patients (36%) with SLE, a finding suggesting that reactivity to retroviral proteins is a phenomenon not specific to SS [36].

The reactivity of SS sera against only a group-specific antigen of HIV-1 raised the possibility that the retrovirus implicated in the pathogenesis of SS was not HIV-1 per se but an HIV-1-like retrovirus. Garry and colleagues [37] reported that an HIAP- I that is antigenically related to HIV-1 has been identified in lymphoblastoid cells cocultured with homogenates of salivary glands from patients with SS. HIAP-I shares a limited number of antigenic epitopes with HIV-1 but is distinguishable by morphological, physical, and biochemical criteria. A second type of human intracisternal A-type retrovirus, HIAP-II, was detected in a subset of patients with idiopathic CD4 lymphocytopenia (ICL), an AIDS-like immunodeficiency disease [38]. Most patients with HIAP-II-positive ICL were also antinuclear antibody-positive.

A subsequent report showed that sections of the minor salivary glands from 31% of patients with primary SS contained an epithelial cytoplasmic protein reactive with a monoclonal antibody to the p19 group-specific antigen (gag) of HTLV-1 [14]. Serum antibodies to HTLV-1 were negative, confirming that the antigen was not part of HTLV-1. The antigen showed properties consistent with an endogenous retrovirus in that it was absent in healthy tissues or resting cells.

Similar results were reported in a study from Japan, where retroviruses were sought in LSGs and peripheral blood mononuclear cells from patients with SS by immunoblotting assay, immunohistochemical assay, PCR, reverse transcriptase (RT) activity assay, and transmission electron microscopy [39]. Sera from 5 out of 15 patients (33%) with SS reacted against the p24 (gag) antigen of HIV-1. LSG biopsy specimens from 7 of the 15 patients (47%) with SS contained an epithelial cytoplasmic protein reactive with a monoclonal antibody to the p24 antigen of HIV-1. RT activity was detected in the salivary gland tissues in 3 out of 10 patients. Transmission electron microscopy revealed the presence of A-type-like retroviral particle epithelial cells of salivary glands. These data suggested the presence of an unknown retrovirus that is similar to HIV- 1 in the salivary gland and that might be involved in the pathogenesis of SS in a subpopulation of patients with SS.

Another group, using a PCR-based strategy, detected novel sequences spanning parts of the protease and RT open reading frames of a retrovirus in salivary gland tissue of eight patients with SS [40]. The sequence is related to that of type B and type D retroviruses and was present in a sucrose density gradient fraction corresponding to that of an enveloped retrovirus particle. The researchers suggested that the sequence represents an infectiously acquired genome, provisionally called HRV-5. However, a follow-up study failed to show an association of HRV-5 infection with SS [41]. Out of 55 salivary gland samples from SS patients tested by nested PCR, only 2 were positive for HRV-5 proviral DNA. One possible explanation could be that, owing to the extremely low virus load in minor salivary glands, the number of HRV-5-infected patients may be underestimated.

Animal models
An autoimmune exocrinopathy with histopathological findings similar to those of SS was observed in HTLV-1 tax transgenic mice [42]. After the insertion of the tax gene, the animals develop a spontaneous sialadenitis characterized by focal proliferation of ductal epithelial cells within the major and minor salivary glands followed by lymphocytic infiltration. A direct association between the expression of tax protein and the extent of the histological damage of the salivary glands was noticed. In another animal model, exocrinopathy resembling SS was induced in mice injected intraperitoneally with another murine retrovirus, the LP-BM5 murine leukemia virus [43].

Therapeutic implications
Steinfeld and colleagues, on the basis of the accumulating evidence for a role for retroviruses in the pathogenesis of SS as well as the clinical observation that the administration of zidovudine (AZT) in some patients with DILS led to diminution of parotid gland enlargement and overall improvement of sicca symptoms [44], undertook an open-label study evaluating the efficacy of AZT in seven patients with primary SS [45]. AZT, the first anti-retroviral agent to be approved for the treatment of HIV-1 infection, is a thymidine analog that reduces viral replication by inhibiting the viral RT. Treatment resulted in significant improvement in all subjective manifestations as well as the objective parameters of ocular dryness. The clinical benefit persisted in 5 out of 7 patients 1 month after the end of therapy [45]. Owing to the possible placebo effect, a common bias in open-label studies of drugs in primary SS, the results of this study should be interpreted with caution.

On the basis of these promising preliminary data, Gescuk and colleagues [46] conducted a placebo-controlled, randomized, double- blind study of lamivudine in primary SS. Lamivudine is a synthetic nucleoside RT inhibitor that inhibits replication of human retroviruses. Sixteen patients with primary SS were randomly assigned to receive either lamivudine 150 mg twice daily or placebo for 3 months. Treatment with lamivudine did not result in significant improvement in the primary outcome measure of unstimulated whole salivary flow or other secondary measures, including minor salivary gland biopsy focus scores. However, the study enrolled small numbers of subjects and thus might not have been powered to detect subtle differences.

The contradictory results for these two RT inhibitors may be due to the fact that retroviral infections can be treated effectively not with a single agent but with a combination of active anti-retroviral agents. The fact that the prevalence of DILS has been reduced significantly in the post-HAART era [33,34] points in this direction.

Conclusions and future directions
Circumstantial evidence suggests that retroviruses are candidates for the initiation or maintenance of autoimmunity in SS. Such evidence includes the presence of antibodies that are cross-reactive with retroviral Gag proteins in patients with SS, the detection of retroviral antigens in patients with SS, the isolation of retrovirus-like particles or novel retroviral sequences from salivary glands of patients with SS, the occurrence of SS-like illnesses in patients having confirmed infections with known retroviruses such as HIV-1 and HTLV-1, the beneficial effect of HAART on the occurrence of HIV-1-associated sicca syndrome, and the occurrence of RT activity in salivary glands of patients with SS. Additional evidence is provided by animal models; HTLV-1 tax transgenic mice develop sieladenitis characterized by lymphocytic infiltration.

On the other hand, serum antibodies that are cross-reactive with retroviral Gag proteins have been described in other autoimmune diseases, such as SLE. None of the patients with SS has signs or symptoms of a systematic viral infection and there is no evidence for vertical or sexual transmission of a virus in patients with SS, all of which are characteristics of well-known retroviral diseases such as HIV-1 or HTLV-1 infection. The hypothesis that the culprit is a defective retrovirus, not able to cause systematic disease or to be transmitted, remains to be proven.

In conclusion, existing evidence suggests that retroviruses, along with other environmental and genetic factors, might play a pathogenetic role in a subpopulation of patients with SS. Future research should better define and characterize this subpopulation, delineate the implicated pathogenetic mechanisms, develop new diagnostic tools to accurately recognize patients with retrovirus-associated SS, and design new therapeutic approaches, possibly using combinations of newer anti-retroviral agents.

Note
Autoimmune Basis of Rheumatic Diseases

This article is part of a series on Sjgren's syndrome, edited by Thomas Drner, which can be found online at http://arthritis-research.com/series/Sjogr ens webcite

This series forms part of a special collection of reviews covering major autoimmune rheumatic diseases, available at: http://arthritis-research.com/series/abrd webcite

Abbreviations
AZT: zidovudine; DILS: diffuse infiltrative lymphocytosis syndrome; HAART: highly active anti-retroviral treatment; HAM: HTLV-I (human T lymphotropic virus type 1)-associated myelopathy; HIAP-I: human intracisternal A-type retroviral particle; HIV-1: human immunodeficiency virus-1; HLA: human leukocyte antigen; HRV-5: human retrovirus-5; HTLV-1: human T lymphotropic virus type 1; ICL: idiopathic CD4 lymphocytopenia; IFN: interferon; LSG: labial salivary gland; PCR: polymerase chain reaction; RT: reverse transcriptase; SLE: systemic lupus erythematosus; SS: Sjgren's syndrome; TCR: T-cell receptor.

Competing interests
The authors declare that they have no competing interests.

Acknowledgements
NVS acknowledges financial support from the Special Account for Research Funds (ELKE) of the National and Kapodistrian University of Athens, Greece.

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replied February 22nd, 2015
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VERY INTERESTING ARTICLE ON SJOGREN'S SYNDROME AND RETROVIRUSES:

Is Sjogren's Syndrome a retroviral disease?

Abstract
Circumstantial evidence suggests that retroviruses play a role in the pathogenesis of Sjgren's syndrome. Such evidence, derived from studies of patients with Sjgren's syndrome, includes the following: the presence of serum antibodies cross-reactive with retroviral Gag proteins; the occurrence of reverse transcriptase activity in salivary glands; the detection of retroviral antigens, retrovirus-like particles, or novel retroviral sequences in salivary glands; the occurrence of Sjgren's syndrome-like illnesses in patients having confirmed systematic infections with retroviruses such as human immunodeficiency virus-1 (HIV-1) and human T lymphotropic virus type 1; and the beneficial effect of anti-retroviral treatment on the occurrence of HIV-1-associated sicca syndrome. Additional evidence is provided by animal models.
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replied February 22nd, 2015
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Jammy you are right its a retroviral decease, and there are so many now in these animals people are eating along with other deceases, tests just don't work. an with people traveling all over it speads fast the world is truly a small place these days. an some of these animals an people can be co-infected with a retroviral combo ,of ptld,ptlv,siv,stlv,htlv,hiv, who knows .I am shocked at all the deceases im finding,due to the eating of bush meat,an other animals which gets spead to humans an then spead though contact with each other an not just from sex either. that's where these deceases are coming from the infected animals,even pets can get them an then pass them on to you. An beaware there are many more, viral deceases other then the ones I mentioned that can spead this way as well, ebola for example.Jammy I have no answers, only many questions,which will go unanswered an the medical doctors where I live have no clue,cannot help me as well.Im doing my very best to avoid direct contact with people. Jammy keep us posted with your mole situation.
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replied February 23rd, 2015
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Very interesting article for the all of us:

LIST OF DRUGS CAUSING MITOCHONDRIAL DAMAGE

Please follow the link:

psychrights(DOT)org(SLASH)Research(SLASH)D igest(SLASH)NLPs(SLASH)DrugsCauseMitochond rialDamage(DOT)pdf
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replied February 26th, 2015
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Non-HIV AIDS
Idiopathic CD4+ T-lymphocytopenia, or ICL, is an immunodeficiency syndrome in which human immunodeficiency virus, or HIV, cannot be detected. Because HIV is the causative agent of acquired immune deficiency syndrome (AIDS), ICL can be referred to as Non-HIV AIDS. As in AIDS patients, Non-HIV AIDS patients exhibit reduced numbers of CD4+ T-lymphocytes, and many Non-HIV AIDS patients have developed the opportunistic infections or otherwise rare cancers associated with AIDS.

Non-HIV AIDS patients may comprise perhaps one percent of all AIDS patients. While the majority of Non-HIV AIDS patients do not belong to any of the risk groups such as blood transfusion recipients, male homosexuals, and intravenous drug abusers in which AIDS was first identified, some Non-HIV AIDS patients do belong to these groups. This suggests that Non-HIV AIDS may also be transmissible.

Research conducted at Tulane University Medical Center suggests that Non-HIV AIDS is associated with a retroviral particle called Human Intracisternal A-Type Particle-Type II, or HIAP-II. Antibodies to this particle have been found in a high percentage of patients with Non-HIV AIDS. Tulane has patented HIAP-II, and Autoimmune Technologies is licensing HIAP-II technology in order to develop screening and diagnostic tests and therapies for Non-HIV AIDS and to study the possibility of generating vaccines against Non-HIV AIDS, autoimmune disease, and AIDS.

For information about diagnostic testing, go to the Non-HIV AIDS Laboratory Test Page.
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replied February 27th, 2015
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Idid some research on your post jammy, I hope you know you floored me on this! I never heard of such crap theres another cancer causing virus out here that there is no test for, An just where the heck did this come from,whos cooking this stuff up? I tested 11 times over 1 year they all told me I was nuts I was 100 percent neg an now I get blind sided by this it is but its not crap, its like its raining cancer out here,an my sex was protected, an I have many of the signs as you an tony,an all neg tests. I don't know what to think bout this on now wow!! an they were telling all of us we are crazy,no wonder why this stuff is speading no one really know whats going on out here,an I m not a drug user never was have not done all this risky stuff,they just think certain groups are becoming infected but that's not true all groups are now effected by these diseases,theres so many of them out here, an now if someone is told as was I you are 100 percent neg of all these diseases, are you? this is nuts. thanks for the post jammy this JUST BLEW THE DOORS OFF EVERYTHING!
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Users who thank therider14 for this post: jammy88 

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replied February 27th, 2015
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Hi pal,

I know, that's very shocking, at least as much as knowing that autoimmune diseases are almost always transmissible. We live in a World full of disease, there's always danger out there.

Best
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replied February 27th, 2015
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Im still in shock over your post jammy, an I checked it out an it was true I never heard of such a thing, an they are telling people you are 100 percent neg after 90 days, this changes all that, an just what do we have? im really confused, now. why is this not headline news,you may have found the answer for us.question is what can we do about it now?
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replied February 27th, 2015
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Non HIV AIDS is a group of different diseases which Doctors are still not able to diagnose and which cause the same symptoms of AIDS.

There are a lot of people suffering from "Chronic Fatigue Syndrome" or similar things. Well, they're usually people who got some sort of unknown / undiagnosed infection, who then get crippled / unable to perform daily activities / etc..

It's a complex problem.

Autoimmune diseases are a big part of it. You'll notice that autoimmune diseases are transmissible as well. This is because they're normally caused by infections.

My opinion is that we're dealing with something being part of it.
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replied February 27th, 2015
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Where the heck did you pull this out from jammy? I have never heard of such a thing, are they saying you have all the symptoms an problems of hiv/aids without having the disease is that right? my god really!!!how is this possible? first Ive seen this, im going to check it out.so all those people they have been telling that they are crazy are not??? are they finally trying to tell us something else is out here but theres not a test for it! I hate to say this but im starting to get pissed.I was told after 11 hiv tests over 1 yr cause I wanted to be sure im 100 percent neg. What are they saying now? I want your thoughts on this jammy
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replied February 27th, 2015
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wow! another awesome post jammy you are on a roll, this is super good info,I never thought of this an autoimmune disease yes I know is a infection but did not know you can spead it, such as chronic fatigue an others, that's a shocker so all these hiv neg, people can catch who knows what chronic condition, from being in close contact with a infected person.let me know if im correct in thinking this jammy,an many of these end up going to some kind off cancer,
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replied February 28th, 2015
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Well, yes, I believe my condition will cause me several autoimmune issues. And I'm also aware that I'm infectious, which is very depressing.
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replied February 28th, 2015
Experienced User
Not to mention the c----word as well jammy, im sure this is why my doctor looked at me an said test for what? I don't even know where to start! he also stated there are unknown virus strains out there, all my tests are neg over the last yr, have simular symptoms as you an the rest of the guys,an after your amazing posts,im in a daze,an there are no tests for this ICL, so when you get sick they treat symptoms right, I mean what else can you do? I m going in first part of march to get the blood tests done again, all was in normal ranges last aug, don't see how it could be now after a year. my main symptoms now are dryskin,my tongue is alittle swollen ringing ears,stomach,stool issues,white/gray tongue. all the rest came an went quickly,in first month.Ihave never been in any pain an symptoms are all very mild, I KNOW we are right on this is a retro-virus, jammy an its not leaving,an there may not be a test for it,let me know if you agree. where are you at with symptoms,jammy and how far out from exposure im 13 months.
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replied March 1st, 2015
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Hi friend,
I hope you had a good Sunday. Are you still working, with all of your symptoms ? I had to quit my jobs 6 months ago 'cuz of my health issues. I hope I can get back to work in a couple of months.

I've been dealing with severe chest pain for the last 5-6 days - it's more like a bone pain, I've never had anything like that.

By the way, the only thing we can do is boosting the immune system and possibly trying to find a Doctor willing to follow our health status. We all need an open-minded Doctor, who is willing to deal with the infectious etiology of several diseases. I'm glad my GP is like that. I hope I'll get able to find good specialists, too.

Oh, I'm in Italy and I'm almost 1 year from my exposure. My 'anniversary' is on March, 7th, the worst day of my life.

Best
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replied March 1st, 2015
Experienced User
jammy im sorry to hear about your chest pain is it a nasty chest cold? Italy should be warm its been 16 degrees here all month if not below zero, I took time off work jammy to run to all these doctors in hope of figuring out what I have been testing every month for last 12 months im into my 13 month since exposure,which had to be from a single French kiss,which she was told not to do,now these experts claim this is low risk yea right, im gong back to work soon wasted enough time with doctors that cant figure this out or don't care to,im getting blood work done first part of march before I go we will see if after 1 year counts have changed, but my doctors not going to care either way,im glad you have a caring doctor there jammy,i hope you feel well soon an get back to work as well that will help make your life seem more normal take some focus of this, I will let you know about how things are going for me an what im doing,an yes bringing up that immune system is key, take care enjoy the weather there it should be warm in Italy here its been high of 16 degrees all month if not -10-15 below,hard to stay healthy in the cold but I have managed so far. get some sun that helps alot
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replied March 2nd, 2015
Experienced User
Hi pal,

no, its not a chest colds, thats why Im worried. Its sternum pain, I'm afraid it might be something bad. I hope its not cancer. Maybe its just some random inflammation, but I'm going to my GP in a couple of days if it doesn't go away.

Thank you for all of your advice
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replied March 2nd, 2015
Experienced User
In the sternum in that bone? that's strange, its 3 am here im going over every virus there is known I have printed 47 pages,lol oh I can sleep good during day but not at nite since my exposure,go figure im dramatized,over this,some of these viruses could be as tony stated in his last post the cause of something bigger so im keeping that in mind, I want to test for more when I go in for blood work, if I come up with something good ill let you know, im going to test for the virus you had stated as well,I tell yea this testing is expensive,Im going to say a prayer for you jammy, that that pain is maybe just some indigestion or something, you just never know whats next?if my ears did not ring I would feel better,so far I have not lost any weight,my arms an legs look same don't seem to be losing muscel mass, I hope you are holding up the same.
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replied March 2nd, 2015
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Hey rider,

I understand your issues with sleeping at night. I had the same during the first months from exposure. I'm dealing better with it now thank to melatonin. You should try it, it's an immune modulator and it's proven to have anti-aging and anti-cancer properties.

As for the muscles, I lost some mass and I know it's due to the disease. But I need to do more physical activity in order to compensate a lil bit. Probably taking CoQ10 is beneficial.

Please let us know about your test results.
Concerning my pain, I wouldn't be worried if I'd be healthy, but… I know that this infection can lead to other, more important issues - such as cancer. That's why I get concerned as soon as some new symptoms appear.

Best,

J
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replied March 2nd, 2015
Experienced User
jammy I have been using the melatonin per your advice on a earier post the 5 percent I take a half pill cause otherwise its in my system til noon next day,i didn't know it was anti cancer anti aging thou that's a plus,going back to work this week,these doctors here will never figure this out, an all I can do is guess,an test,if I ever tip over someone will have to figure it out then.I did everything as well as you have to try an figure it out,The doctors don't want to deal with trying to figure anything out no time,dont care so it is what it is. Was thinking about what you said about you chest I bet it is alittle inflammation I hope your doing better,its a awesome 15 degree day but very sunny im loving that.I made a appointment for more lab work at a private lab since doctors don't want to see me on this anymore,so I should have those results next week mon or sooner,how are your folks doing?
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replied March 4th, 2015
Experienced User
rider,

I'm glad you're trying melatonin and I hope it has good effects on you.

I went to the GP and I have lungs inflammation. I got prescribed something and I'll be ok in a few days.

This disease is like living a constant hell. I'm scared of thinking about my future, I try to live the present but it's tough, indeed.

Best
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replied March 13th, 2015
Active User, very eHealthy
So when do you take melatonin (night time only?). I read before it's good to use for some time only though, like 1-3 mos (i forgot), but not too long.
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replied March 4th, 2015
Hi, im from Mexico and i just found this forum and i was surprised by this thread, i've never heard of htlv before and... well i don't know what to think now... i been suffering from many simptoms that you described here and i'm another negative tests collector.
I don't know where to start but i'm going to describe my expusure first... it was sex with a sex worker, i used comdon but as i was a little drunk i could not hold an erection the entire time so the comdon sliped a little bit during withdrawal, it sliped more than the half of the shaft so i placed again and continued, i didn't eyaculated, i finished as the time i paid for just ran over, i took away the comdon and it was not broken or anything as far as i remember, she also preticed oral sex to me with the comdon before penetration. two days later i noticed a very little wound at around the half of my shaft, it was already with a scab and i don't know if i got it during or before sex with the SW. It was it, a week later i started to get a little paranoid as it was the first time i had sex wit a sex worker so i did an elisa test and a vdrl 8 days later which of course came back negative, around two weeks later i started debeloping some siptoms, muscle aches, tingles in my body, litle pain lower back, joint aches, malayse, evrything was really mild, not really painfull but of course i was really worried so i went to a place where they give free rapid tests and orientation about hiv and std's, i get a rapid test(24 day before exposure) which came back negative, i talked to them about my worries and syptoms and they recomend me to have a 4th generation test at a lab so i took it the next day, i was indded 4th gen abbott, and from there i keept practicing tests very often most of them 4th generation, as my symptoms keep beeing present, my last test was at 6 months and it was negative, during all this time i had many symptoms and thats is why im wooried, even if everybody tells me im fine i just can't thrust my tests because of all those weird things going in my body...
Here a list of those, some still present, some came together and other separately:

-Muscle aches(still present from time to time, not painful)
-Bone aches, not sure if it is actually in bones but feels like(still present from time to time, not painful)
-Tingling in armas, back, legs
-Lower back pain
-Joint aches(still present from time to time, not painful)
-Peeling fingertips(still present)
-Lack of hunger
-Lack of focus
-Problems to sleep
-Weight loss
-Floaters in eyes(still present)
-A little fever and throat pain around 4 months after exposure that disapeared with medicine and antibiotics whithin a week(probably a comon cold/flu)

I have a total of 16 negative tests between day 8 to 6 months:

3 vdrl
1 hep c
1 hiv rapid test
2 elisa
9 4th gen tests

I don't use hard drugs, i don't have cancer, never got blood transfusion so i don't know what is happening, i hope is something else or stress...
This week im going to do another 4th gen test at more than 8 months(237 days after exposure) I hope it came back negative again but some of my symptoms are still here, so i don't know what to do...
Thanks, any advice or comment on my situation will be really helpful, thanks, im going to read all posts to understand better and BTW sorry for my bad english, thanks in advance, i will let you know the results of my next test!
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replied March 4th, 2015
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Hi Paparanoid,

'welcome' to this forum. I'm sorry for what you're dealing with.

I'm not able to tell what you have. I can just tell you that you're not crazy, and there's obviously something out there which is not being caught by normal tests.

Please have a read to all the posts and let us know what you think in relation with your personal experience.

Please hang in there.

Best.
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replied March 4th, 2015
Experienced User
jammy you had thought it was inflammation an after thinking about it I thought same im glad that's all it was,yes this is all real confusing,Hang in there jammy.paparnoid; sorry to hear about your situation,if you had that many hiv tests as we all have,out past 90 days its not hiv,those very sensitive tests,you can continue to test if you like as I did out to 1 yr,but they will all be neg.we are all looking for answers all we have is many questions,do as jammy stated go back read the posts they are very helpful in understanding the situation you are in then we can talk.
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replied March 5th, 2015
Experienced User
hey jammy have you tried donating blood? there suppose to check for all these viruses in the blood supply, if they find something they send you a letter or call you in.
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replied March 5th, 2015
Experienced User
hey rider,

no, I would never try donating blood. I know something's wrong with my blood, and I'm pretty sure they wouldn't be able to catch it with normal tests. I prefer to keep testing in hospitals.. I would never want somebody to get this disease.
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replied March 5th, 2015
Experienced User
that scared49 guy said he did this an never heard anything from these folks that check the blood.an he infected his wife as well,what ever happened to this guy? anyway me an my doctor got into a fight today, I called my main hospital to get all the costs of my tests I wanted which they were happy to give me,an stated that the doctor an lab would have no problem providing me with the results, my doctor refused to order the tests,he had no reason to refuse this it was okd by hospital corp office,he just does not want to deal with me or what I may? have so im demanding a new doctor,no one is coming forth,an my ins is just for this hospital,so its not like I can go anywhere.I cant get the tests or care I need even with the money to pay. How can I know whats going on without these tests, theres no help here just death panels.you are lucky to have a doctor to help you there jammy.
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replied March 5th, 2015
Experienced User
jammy has your skin gone dry an is the texture different? im not liking this my skin was always oily an young looking, lips are dry, that doctor must have gotten a talking too my tests are approved by hospitals corp office. he saw them as un required.by him!
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replied March 6th, 2015
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Hi rider,

I had changes in my skin (many more moles; higher tendency to develop dermatitis etc…), fingernails (vertical ridges) and hair (relevant hair loss during onset).
To ease nails and hair symptoms, I take biotin (belongs to vitamin B family). For dermatitis and to ease skin inflammation, Omega 3 is my favorite.
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replied March 6th, 2015
Experienced User
It's always hard to find the right person, when your health is involved.

In the U.S. it's even worse, cuz HealthCare system is private and much more complex to deal with. I lived in California in 2012 and I myself had some troubles with some Doctors - unfortunately, I had a recurring EBV infection and I had a bad time even there. But then I recovered, thank God.

Now I'm again with health issues, much more serious this time. Italian Doctors might be more willing to test you for some diseases (not always), but they're generally less competent than the American ones. Their 'ego' is still huge , tho.
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replied March 6th, 2015
Experienced User
jammy my nails have those lines too have noticed more of those red pin head type dots on me, just got my blood drawn for those tests doctor to read next week, stopped at another clinic where they are doing more lab work an had taken blood on tues they said the lab had tested my blood for all the wrong stuff I said they did that last time an forgot to test for other stuff I wanted as well that's why im testing again to begin with. jammy this is a joke over here, they cant get anything right,now I carefully went over all my tests I wanted today an said don't mess this up.there were all asking if I traveled anywhere or felt I was infected with ebola,i said you cant even figure out what I got now what would you do if I had that, lol.I do have a full bottle of biotin so I will add that to my daily vitamins, its still below zero here,going to warm up next week. how are you feeling now jammy ? is chest ok?
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replied March 7th, 2015
Experienced User
Thanks for asking, man - much better now, the cough syrup did an amazing job.
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replied March 6th, 2015
Experienced User
hey jammy doctors nurse calls me tells me they want me to get colen checked I told him sure right after you figure out whats really wrong with me an its not the colen, they wanted it done last august an just got around to telling me now,lol.you just cant make this stuff up jammy,I told them that im just now getting the tests I wanted do in august but were refused,thats if they test for right stuff or don't lose results which they have done to me in the last 2 months.Jammy was watching a movie that made me think of our situation,go on youtube an watch it its free, THE LOST FUTURE, I think you get a kick out of it lol.
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replied March 7th, 2015
Experienced User
Hi guys,

this post is just to share with you my feelings. Today, March, 7th, is my 'anniversary'. One year ago I got infected and my life changed forever.

I had the most difficult time of my whole life in the past few months. I thought I was gonna die, either for the disease itself or as a suicidal. Well, I'm still here and I'm about to turn 27 (in a couple of weeks…).
Many things have turned for the worst and life isn't as easy as it used to be. I had an amazing job, I was fit, sociable, healthy and had enough money to live by myself and save for the future. I had a lot of plans, many dreams which will probably remain unrealized.
12 months later I'm a skinnier guy with less certainties and many more fears. If the Devil exists, it did an amazing job in scaring me and making me live a nightmare. I don't know if I will ever wake up. But I thank God I found this forum and I keep fighting my battle - like the all of you.
Vitamins and supplements have become my daily medicine, together with rest. I temporarily quit my job, but I hope I can get it back in a few months. Working in the office is still affordable.
Symptoms come and go.There are many up and downs with this disease, and you never know how the next day will look like.
I thank my parents from the bottom of my heart - they are the ones who protected me, who cried with me (poor mom, I made her feel miserable with this disease), and who still believe I will have a certain kind of future. I pray to God everyday for forgiveness and for making my family as happy as it was before this hell started.
Doctors have never helped, and they probably never will. Immunosuppressors are not a kind of treatment I want to afford now. I believe in boosting my immune system and taking care of this viral syndrome.
I guess one day - by God willing - we'll all feel a bit better, but I can't be sure about it.
I'd like to know about the people who started this topic. How are they doing, etc. It would be an invaluable help and positive contribution. TonyDewitt, thank you for always being there with your precious advice. Also, I have to thank several other members in here, who have made me feel less miserable throughout all of these months.
I'm still here, and I will be for a long time. Cuz I don't give up.

Thank you,

J
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replied March 7th, 2015
Experienced User
Jammy IM glad to have a broader view on where your life is at today. yes many doors open an close in ones life,an with most diseases a lot of doors you wanted to open,will remain closed, take the time now to reflect on what you want to get out of life,even if its something simple,like riding a motorcycle, or helping others in dealing with this disease whatever it may be? I know for a fact you are good at that,an you are a smart guy,wasnt rocket science to figure that out even from where I am,an yes tony had lots of good info as well,from all the reading ive done an trying to figure this out for myself, I am amazed at all the disease out here,i had no idea, even coming in close contact with others, you can catch many diseases, an that does not mean having sex either,an that's a warning to all you folks that may be reading this an not infected.keep fighting the good fight jammy keep helping others,an others will help you.
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replied March 8th, 2015
Experienced User
jammy, hope all is well we had a nice 30 degree day here as spring nears,played basketball for 4 hrs with my sons,was nice to have a normal day, my bike will roll soon some are out now.should hear for the doctor soon to see where my blood tests have me at,have you heard about the antiviral effects of olive oil,which is all around you there in Italy,an hemp, an apple cider vinegar,an coconut oil, read up on these an combos of these let me know what you think, im gong to try coconut oil its also good for skin an nails an hair,as well as antiviral, an the olive oil. find something that makes you happy jammy some hobby, some cause your family an pour yourself into it,no garrantees in life,some folks get minutes,some hrs, some several yrs,an some lucky ones a life time, its what you do with the time you get that matters jammy!
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replied March 10th, 2015
Experienced User
Thank you therider. Smile I definitely want to fight. I'm too young to give up…
cheers,
J
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replied March 10th, 2015
Experienced User
THIS IS FOR ALL THE PEOPLE THINKING THAT HTLV CAUSES SYMPTOMS ONLY AFTER 20-30 YEARS…

Intern Med. 2015;54(1):75-8. doi: 10.2169/internalmedicine.54.2950. Epub 2015 Jan 1.
Human T Lymphotropic Virus Type-1-associated Myelopathy Manifesting Shortly after Living-donor Renal Transplantation.
Nagamine Y1, Hayashi T, Kato Y, Horiuchi Y, Tanahashi N.
Author information

Abstract
A 38-year-old woman experienced numbness in both lower extremities and spastic paralysis a few months after undergoing living-donor renal transplantation. The patient was negative for human T lymphotropic virus type-1 (HTLV-1) antibodies prior to the procedure; however, she was diagnosed with HTLV-1-associated myelopathy (HAM) based on positive serum and cerebrospinal fluid antibody titers after the surgery. Because the donor was also positive for HTLV-1 antibodies, the infection likely originated from the transplanted kidney. Clinical and imaging improvements were noted following the administration of interferon-. HAM has been reported to occur after living-donor renal transplantation; however, there are no previous reports of onset within such a short period.
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replied March 10th, 2015
Experienced User
JAMMY;Got 61 degrees tomorrow the rider, rides nothing on my blood tests from last week yet? hope they didn't lose them,ill call over there,or maybe? ill ride over there that sounds better.was reading about the lipid membrane of these viruses, they say if you can damage it your body will then be able to kill an dispose of it? think about that jammy,I know I don't have hiv which has a thicker membrane then most all viruses that's why its so hard to get rid of esp in the bone marrow,an reservoir areas of the body,I want you to check out this artemisinin with sweet wormwood, its a very powerful an natural antiviral,from china used since 200 bc there.it comes in 100 mg caps,90 per bottle its also used to treat marlaria,cancer,lyme disease,babesia,etc, amazon sells it an people have left comments,it may help ? check it out its inexpensive as well im going for it,what happened to your pal from mexico? maybe he got lucky an it was something that could be treated. an that's what we need jammy a treatment plan I did test for all stds an all test neg as well as lymes disease an hep,a,b,c but my symptoms same as all you guys,are we going to let this virus outsmart us jammy?not without a fight!!!!!!!
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replied March 11th, 2015
Experienced User
jammy got my blood work back today all my levels are normal ranges except my lymphocytes which was 5 points higher then the norm but the doctor said he has no cocerns in reguard to my blood counts, all I can do is watch my blood levels an t cells,at this point he thinks im really nuts now,I wouldn't be questioning if I didn't think somethings up? but what?so confusing.Iwas reading some of your old post from another that rash you had is not related to a retrovirus,an many viruses give very similar symptoms,an you said you were in bed 4 months,which is not normal,you need to talk to your work friend an look back at there exposure,how does your blood work look? id trace it back, that could be like a tick,bug,like smokey mountain fever,lymes disease, that kissing bug disease. check into that stuff,that rash was really strange.
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replied March 12th, 2015
Experienced User
Hello friend,

well at least you still have 'normal' blood work. Which of course doesn't mean you're doing just fine. Neutral

Did you see my skin rashes? pretty weird, huh? Well, Lyme Disease was negative in my cerebrospinal fluid. I don't know.


There's an old article (published in 1991), which related Chronic Fatigue to an HTLV-like virus, identified thru gag- PCR. I believe I'm infected with something like that. Which wouldn't be good at all.
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replied March 12th, 2015
Experienced User
jammy if you ask my doctor he would tell you im fine im just nuts,an who would you believe? yes tests are normal,yet,have not turned! lol yes I have read where chronic fatigue an several other chronic problems are all apart of that an other retroviruses, my doctors getting pissed, he said hes not doing any more un required tests on me, the nurse states im putting his license at risk , my take is I have the money do what tests I want because he don't know what to test for or where to start,lol, maybe ill do what you have done give up testing theres no point if theres no treatment.yes my lymes was neg too,thats rash is not any retovirus type rash, I don't know what the heck that is,do you feel like your getting better jammy?you know if you are depressed those symptoms are like a viral symptom too,so you have that to deal with as well,which I believe anyone in our shoes is too some degree or other,I still want your feedback on this artemisinin w sweet wormwood,have you checked it out? im going to give it a shot ill let you know down the road if its doing anything, don't forget im on that beck plan so I do the electro pulsing blood cleanse,that may be why I have better blood results? I got some gingko its suppose to help cure ringing ears, ill let you know if it works. how are you feeling overall now jammy
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replied March 13th, 2015
Experienced User
hi man,

I'm feeling better, thank you. Well, I don't know about artemisinin. What I know is that some supplements can help prevent cancer - so this might be the case. We cannot know in advance what will happen to us. But I guess we can do something to help our body fight what's inside us.
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replied March 13th, 2015
Experienced User
I ordered that turmeric with curcumin for an anti inflammatory also for pain an stiffness, so im adding that. as per your advice, my legs just started to have alittle tingling going on no pain im just wondering if somethings going on there? don't pay to go to doctor he already don't want to see me anymore on this. due to all neg tests already. how are your muscles an joints feeling im only going into 14 month, really!! where that decade go jammy oh yea you posted that awesome article explaining it all too well! good job jammy!
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replied March 13th, 2015
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TR,

Good move on the turmeric/curcumin - it is a demethylating agent that works well against HTLV.

Best wishes.
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replied March 13th, 2015
Experienced User
Hi Tony, nice to hear from you again. Hope you doing ok, despite everything.

Therider: I absolutely agree with TD on curcumin. Very good supplement. As for what concerns legs tingling, I suggest the following:
- Vitamin B complex (B1, B6, B12)
- Palmitoylethanolamide
- General supplementation for nerves health.
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replied March 13th, 2015
Extremely eHealthy
J,

Thanks, and also I agree with your Vitamin B complex suggestions, since they protect nerves - recall that Prosultiamine is a Vitamin B derivative and very important against HTLV. While I've never heard of Palmitoylethanolamide, seeing that it is a nuclear factor agonist, recall that nuclear factor kappa beta (NFKB) is part of the HTLV lifecycle, since it thrives on inflammation.

Regarding turmeric/curcumin, go heavy on it, when I could afford it I was taking up to 2,000 mg daily, it did wonders for inflammation and especially a big improvement in my bowels - studies have concluded that taking 6,000 to 12,000 mg daily had no ill effects on people.

Best wishes.

PS: Worth mentioning that my bowels have been usually shot since this nightmare began, so I am grateful to God when I do have a good bowel movement. This might seem unimportant, but remember than your gastro intestinal health is very important not only for nutritional absorption, but also because 70 percent of your immune system lives there. Do everything to protect your GI tract (supplements, yogurt, probiotics, healthy diet) and you will enjoy the benefits.
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replied March 13th, 2015
Experienced User
Agree with everything.

Concerning Palmitoylethanolamide, the neurologist suggested me to take it. So far it was the best advice I got from a Doctor… It greatly relieved my neurological symptoms.

Here's the link concerning the HTLV-II-like virus and CFS. It was published in 1991, so it might not be very updated…but still can give an idea of how difficult isolating viruses can be.

"Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome"
www(DOT)pnas(DOT)org(SLASH)content(SLASH)8 8(SLASH)7(CLASH)2922(DOT)full(DOT)pdf
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replied March 13th, 2015
Active User, very eHealthy
Oh yes! I was typing a reply when i signed in, but my text is gone=(. Anywa, just to say those anti-inflammatory supplements like turmeric are sure helpful, just as other 'food' like ginger, garlic, virgin coconut oil. I only read from this thread today but a little here and there, and do not claim to know about what you guys are really going thru. Just that anti-inflammatory diets are hopefully helpful, and esp to renew blood cells, i hear the green cereal grasses like wheat and barley are esp useful much like spirulina, wc i dont suppose you have prohibitions though? And spirulina is not expensive, but very nutritionally dense food of the eskimos/other cultures too? A pity, but i cant retrieve my earlier typing and have to cut this short. Hope you get better all.
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replied March 13th, 2015
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J,

I'd love to post that article you mentioned (which related Chronic Fatigue to an HTLV-like virus, identified thru gag- PCR) on the HTLVhelp face book page, can you perhaps send me the link to it please?

Thank you.
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replied March 13th, 2015
Experienced User
see post above Wink
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replied March 13th, 2015
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Btw, as this is a very long thread i cannot really read all, may i ask at this point, when you have checkups, are there foods your doc(s) prohibit right away or say to avoid? Am just interested. Tnx.
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replied March 14th, 2015
Experienced User
Hi samm,

lactose is surely to be avoided (it can trigger several reactions in one person's body).

As a general rule, fruit and veggie diet is preferable. Omega-3 foods can be very beneficial, too.

You can find better indications on diet a couple of pages backwards.

Best,
J
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replied March 15th, 2015
Active User, very eHealthy
I see, thanks. So how do you take probiotics aside from the tab/cap form when yogurt is not recommended? And fermented foods ok? Like kimchi, soy products...
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