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Certain HIV positive, but negative tests (Page 118)

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March 13th, 2015
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If you read carefully that article, the possibility of horizontal, CASUAL transmission of HTLV is mentioned. It is underlined that the patients involved in the study hadn't had any risky exposure typical of retroviral infections.

That would explain why many people with CFS are normal people with a normal life, usually with Masters Degree and everything. This is also aligned to the experience of people in this forum. Low risk exposure --> infection.
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replied March 14th, 2015
Experienced User
JAMMY! WOW ANOTHER AWESOME POST! if you read back I said from start my exposure was from this woman putting her tongue in my mouth but a second ,an I pushed her away.she was told not to do that.an I had stated this is very infectious,whatever it is like a flu cancer.I could tell you were happy to here from tony,i keep checking my eyes my god if they swell that would be horrific,an they may be alittle I do have more swelling now,no pain yet. like you said its day to day never know what you are going to get.one think for sure its not getting better.
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replied March 14th, 2015
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Hi man,

Glad you appreciated the article.

Btw, my eyes are swollen. My dad has very swollen eyes (I infected him thru accidental toothbrush sharing. Of course he infected my mom thru sex). We all have much different faces right now.

I hope they can make it to die without getting leukemia or cancer. They're 58 and 52. Hopelly this virus takes 30 years before hitting them hard. They do not have many symptoms - at least neurologically - but they have some (itching, red face, lack of energy in the morning, etc..)

I hope I don't see my family falling apart. This is the main reason why I would kill myself, but I swore to myself and to God that I'd take care of them till the last day of their lives.
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replied March 14th, 2015
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Another article proving the effectiveness of Curcumin. A couple of weeks ago I was discussion with my GP the possibility of my issues being caused by mastocytosis (with viral trigger) and she was considering that a lot. This article says that Curcumin can inhibit mastocytosis. So I'm definitely going to increase my daily dosage.

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The Journal of Immunology, 2013, 190, 59.18
Copyright 2013 by The American Association of Immunologists, Inc.
59.18
Frequent ingestion of the curry spice curcumin inhibits mastocytosis and suppresses intestinal anaphylaxis in a murine model of food allergy (P6034)
Clinton Mathias,1Sagar Shah,1Rebecca Statham,1Amos Gambrah,1Elizabeth Henchey,2 and Sallie Schneider2,3
1Pharmaceutical and Administrative Sciences, Western New England University, Springfield, MA 2Pioneer Valley Life Sciences Institute, Baystate Medical Center, Springfield, MA 3University of Massachusetts at Amherst, Amherst, MA

IgE antibodies and mast cells play critical roles in the establishment of allergic responses to food antigens. Curcumin, the active ingredient of the curry spice turmeric, has anti-allergic properties, and thus may have the capacity to modulate mucosal mast cell activation and function during allergic responses. Here we show that frequent ingestion of curcumin inhibits mast cell expansion and suppresses intestinal anaphylaxis in a murine model of ovalbumin (OVA)-induced food allergy. Intragastric exposure to OVA in i.p. sensitized BALB/c mice induced a robust IgE-mediated response accompanied by enhanced OVA-IgE levels, intestinal mastocytosis, elevated serum mMCP-1 and acute diarrhea. In contrast, mice exposed to oral curcumin throughout the experimental regimen appeared to be normal and did not exhibit intense allergic diarrhea or a significant enhancement of OVA-IgE and intestinal mast cell expansion and activation. Furthermore, allergic diarrhea, and mast cell activation and expansion were also suppressed in mice exposed to curcumin during the challenge phase alone, despite the presence of normal levels of OVA-IgE. This suggested that curcumin may have a direct suppressive effect on intestinal mast cell homeostasis and function during food allergy. In summary, our data demonstrate a protective role for curcumin during allergic responses to food antigens, suggesting that frequent ingestion of this spice may modulate the outcome of disease in susceptible individuals.
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Again, I remind you guys that mastocytosis can be associated with myelodisplastic syndrome (pre-leukemia condition).
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replied March 16th, 2015
Extremely eHealthy
J,

Thanks for the reference to Curcumin/Tumeric - I just posted an article to the HTLVhelp face book page describing its anti-cancer and anti-inflammatory effects, here's a quote (note the dosing amounts, along with references to nuclear factor kappa beta, STAT3, and AP-1, which are related to HTLV activity):

A/Prof Sethi says curcumin is possibly the only drug that can be given at high doses—up to 12g—without any toxicity.

"It can target most of the oncogenic proteins like NF-kB, STAT3, AP-1," he says.

A/Prof Sethi says it would be ideal to combine curcumin with other drugs or natural compounds, like piperine, an alkaloid found in pepper to increase its bioavailabilty.

"If we combine it with piperine we see viability increase by 2000 per cent 45 minutes after administering the curcumin," he says.

Best wishes.
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replied March 14th, 2015
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Interesting article on viruses causing CFS:

www(DOT)ncf-net(DOT)org(SLASH)library(SLAS H)jcfsvirus95(DOT)htm


I quote from the article: " In recent years the following RNA and DNA viruses have been investigated in connection with CFS:

1. EBV
2. HHV-6
3. Coxsackie B
4. HTLV-II-like virus
5. Spuma virus
6. Hepatitis C
7. HHV-7
8. Stealth virus
9. Virus-like particles resembling retrovirus"
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replied March 16th, 2015
Extremely eHealthy
And HHV8
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replied March 24th, 2015
Extremely eHealthy
And JC virus.
And Parvo B19 virus.
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replied March 14th, 2015
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jammy I just got hit with all the swelling as well around eyes, under one arm, in left groin area, my back which has then gone to legs. you need to find us all an island, lol. I still feel good, never been sick yet, the blood looks good, but as you said appearance is only a deception,to whats really going on. I HOPE best for your parents there jammy,an you of course whatever this is you don't have to have sex to get it.more awesome articles keep up the good work jammy.
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replied March 14th, 2015
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Thank you , my friend. I'm sorry for your issues. Please focus on supplements and vitamins. They work very good in easing your symptoms, I promise.

Nice weekend to u

J
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replied March 15th, 2015
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Electrophysiological analysis shows dizziness as the first symptom in HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP).

Labanca L1, Starling AL, Romanelli LC, Sousa-Pereira SR, Carvalho LN, Fernandes DR, Carneiro-Proietti AB, Utsch Gonalves D.


Abstract
Dizziness is a symptom in HAM/TSP and may occur due to vestibulospinal tract dysfunction. This tract can be assessed by an electrophysiological test called Vestibular Evoked Myogenic Potential (VEMP). The aim was to correlate the result of VEMP generated by acoustic stimuli and dizziness in individuals with HTLV-1-asymptomatic infection and HAM/TSP. VEMP was recorded from the sternocleidomastoid muscle of 60 HTLV-1-negative adults (60 8 years) and 60 individuals infected with HTLV-1, 30 being asymptomatic (59 8 years) and 30 with HAM/TSP (59 8 years). In all groups, 90% of the participants were women. VEMP was generated by acoustic stimuli (short tone bursts), with an intensity of 118 dBHL and band-pass filter from 10 Hz to 1500 Hz and presented 200 stimuli at a frequency of 1000 Hz with a record time of 60 ms. Of 60 HTLV-1-negative individuals, 14 (23%) reported dizziness; VEMP was normal in all. In the HTLV-1-asymptomatic group, 11(37%) complained of dizziness (P=0.31); VEMP was altered in 4 (40%) subjects with dizziness and in 1 (5%) without dizziness (P=0.00). In the group with HAM/TSP, dizziness was reported by 17 (57%) subjects (P=0.002); VEMP was altered in 11 (64%) with dizziness and in 5 (38%) without dizziness (P=0.15). Dizziness without an apparent etiology in HTLV-1-asymptomatic carriers deserves attention in terms of a possible subclinical spinal cord involvement that can be clarified through spinal electrophysiological tests. Damage of the vestibulospinal tract seems to occur in the early stages of HAM/TSP.
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replied March 15th, 2015
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[Rinsho Ketsueki. 2015;56(2):210-215.]

Adult T cell leukemia-lymphoma with allo-HSCT after treatment for pulmonary involvement with Mogamulizumab.

Kawashima I1, Sueki Y, Yamamoto T, Nozaki Y, Nakajima K, Mitsumori T, Kirito K.
Author information

Abstract
Adult T cell lymphoma-leukemia (ATL) is a highly aggressive disease and allogeneic hematopoietic transplantation (allo-HSCT) is the only therapeutic option for achieving a cure. However, some ATL patients cannot undergo HSCT. One of the important reasons for restricting HSCT in ATL is the high incidence of pulmonary complications associated with ATL including opportunistic infections, infiltration of ATL cells, and HTLV-1 associated bronchopneumonopathy. Herein, we report an ATL case with pulmonary infiltration of ATL cells successfully treated with allo-HSCT after improvement of pulmonary function with administration of the anti-CCR4 antibody mogamulizumab. To our knowledge, this is the first ATL case showing improvement of pulmonary invasion of ATL cells after treatment with mogamulizumab. In addition, this case suggests that mogamulizumab treatment might be useful as a bridge to allo-HSCT in ATL patients.
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replied March 16th, 2015
Experienced User
Has somebody here tested for Monoclonal Gammopathy? I'm scared to test for it….
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replied March 16th, 2015
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theres no treatment for whatever we have right?
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replied March 16th, 2015
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I guess there will be some approved treatment in 10-15 years. However, at the moment only our symptoms can be treated, not their cause. Which is the same that happens with Rheumatological diseases.
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replied March 16th, 2015
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10-15 yrs ill be dead!lol I just had my blood done so I don't have any thing going on there yet an I going to do blood work once a year, due to fact theres no treatment,im sure you are good as well jammy we are not that far into this yet, what I mean to say is you don't have this monoclonal gammopathy, which are proteins in blood causing cancer.what you need to do is head for the beach an relax in the sun,that would be a good treatment for you,take your folks with you.I bet you feel better when you get back?
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replied March 17th, 2015
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good job on keeping yourself checked periodically. I guess this is the only thing we can do, together with having a good lifestyle and diet.
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replied March 17th, 2015
Experienced User
Today I went to the Dermatology department to get a mole removed. I got told I have many moles, but they don't look dangerous at the moment.

However, for the first time I got told to go to a Hematologist - in relation to my ongoing symptoms.

God Help. Sad
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replied March 17th, 2015
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jammy , yes getting my blood work done will tell me a lot about my health an where I am an,what direction im in,Im trying with your help an the supplements put a program together, an hold this off long as i can. I always had several moles on my back been watching them so far so good,how are you folks holding up over there? I got my inflammation pills two days after order see how they work purchased a 4 month supply.
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replied March 18th, 2015
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Good job man, hopefully the pills work good. Best wises my friend.
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replied March 18th, 2015
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turmeric curcumin 1300 mg cap strongest I could find tony said to go heavy on them so for first week im taking three a day morn,noon,bedtime, after 3 days now the, muscles in my legs stopped shaking not easy to go to sleep with that sensation,an the stiffness is way better,tongue feels alittle better as well,plan is to take two a day.if it helps with digestion that will be big plus too,otherwise I still feel good an am in no pain at least, but as so stated jammy its day to day.so yes the pills are a big plus.as tony had said.jammy I had read where people like me an you, go to doctor to monitor our blood an try to keep it in the normal ranges as best one can,cause if elements in the blood get away from us we are doomed.thats why its so important to what your counts,jammy I hope you are doing well on your end,im holding up ok here,an get out there an enjoy that sun on your face an the air in your lungs.
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replied March 18th, 2015
Extremely eHealthy
TR,

Glad to hear that the turmeric/curcumin is helping you, some manufacturers combine peperine (i.e. pepper), since it increases the bioavailability of the turmeric/curcumin. Recall that turmeric/curcumin is important because it acts as a demethylating agent, which is the same effect provided by cancer drugs Azacitidine(AZA) and Decitabine(DAC), see article titled "Transient Low Doses of DNA-Demethylating Agents Exert Durable Antitumor Effects on Hematological and Epithelial Tumor Cells".

Following this pattern, ANY supplement that has demethylating effects should be taken daily.

Best wishes.
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replied March 18th, 2015
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J,

Look for high platelet counts, that's another symptom caused by this virus.

Best wishes.
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replied March 18th, 2015
Hi all, I have been in touch direct with TD re issues that have been affecting me. The initial details are below:

I had a sexual encounter in Portugal with a British female who spent her time in England and Portugal, stupid last drink in a bar before heading back and she appeared from nowhere. The sex started protected & ended up not (during sex female removed the comdom and in the heat of the moment I completely messed up). The offer and subsequent drunken take up by me was in retrospect to flaming easy. Abroad with the lads moment and regret my actions / stupidity beyond belief.
I have tested for all STI inc HIV (which was an obvious concern) at a UK gum clinic all negative. Tested for HIV right up to 5 months. All 4th gen and I completely accept that HIV is not my issue. Due to symptoms continuing & online research I came across HTLV (via sites like this, the body, freedom health). Symptoms appeared very quickly. 4 days post exposure physically shaking in bed and night sweats for 2/3 nights. Then nothing for around 6 weeks, then 1 - 1 1/2 weeks of sleep issues, night sweats, fatigue, burning sensation which then stopped. Since that time I have developed a number of symptoms consistent with HAM (weight loss 12 stone 8 to 12 stone, twitching leg muscles, muscle mass reduction, lower back pain, bloodshot eyes, dry mouth & gum reccession & not normal bowel movements. Due to which I requested a HTLV test as a result of concern due to symptoms & having read about htlv. This test was requested a full 6 months post exposure. This was carried out a NHS UK hospital & a serology antibody test was conducted. The result was negative. But due to symptoms a number of tests were also ordered.
There is a national centre for retrovirology in London which specialises in HTLV (imperial collage hospital London) which has 3 satellite offices. The doctors I initially saw had little knowledge of HTLV but in fairness requested the antibody test which was sent to a regional centre for testing. It went to one of the specific centres as only these offices deal with the tests within NHS hospitals.
These included:
Full Blood Count: all normal though sodium / iron levels slightly low
Liver & Kidney Function Tests: normal
Normal inflammation marker
Every kind of routine blood test: Normal
Full Body CT scan: Normal
Head MRI: Normal
Colonoscopy: Normal, slight inflammation but no concern
Consultant mentioned heading towards Post Viral Fatigue / CFS but not sure about this diagnosis...
Have seen the team today and they have said they are looking towards referring me to infectious disease team to see if they will look at HTLV in more depth due to their lack of knowledge. Infectious disease team can authorise WB & PCR test as normal doctors are unable to get these authorised. Major difference from here to others places in the world NHS care / tests & treatments are free to all at point of entry due to taxes etc paying for it. Therefore specific routes have to be followed for tests to be authorised.

I am now 10 months post exposure and weight remains the same 12 stone (no matter what I eat), sleep issues, twitching legs, red eyes which are not itchy / or sore / or inflamed and sometimes improve but not to the crystal white pre exposure. Gum recession which is worsening though dentist every time says nothing be concerned about just gloss and brush though I know my own body / teeth and know they have receded a fair bit!. No matter what I say / do everything done returns with "normal" or "negative" results which is leaving doctors confused and me concerned. Obv I am anxious / stressed over it all but Won't accept that is the cause of this. I was a perfectly healthy young man (36) prior to this... I am married and confession to my wife was not easy and now she is at a point due to volume of negative everything, who is saying to move on and it's in my head which is kinda what I think the doctors are thinking. I am hopefully of the referral to infectious specialist can turn some unturned stone. Thought long and hard before posting on the site but thought I would out it out there.

Regards all

Scared 1010
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replied March 19th, 2015
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Hi Scared,

I'm exactly where you are.. similar symptoms (very mild at the moment, mostly dealing with fatigue and some legs issues; a lot of new moles on my body), every Dr. said it's 'nothing to be concerned about', blah blah… but my GP is a young woman who has knowledge on autoimmune diseases and unknown infections, so she's following my case.
I got referred to a Hematologist, and I'm sure I'll find out what I don't want to know (i.e. having monoclonal gammopathy). Like you, I was 'diagnosed' with Post Viral CFS, which is not a diagnosis.

Hopefully somebody will help us at some point. I'm definitely scared,too, like your nickname says.

Best
J (italy)
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replied March 19th, 2015
Extremely eHealthy
J,

Scared's post reminds me of another Scared (Scared49), who used to post here regularly. Yes, it's incredibly sad that one moment of lapsed judgement could turn into a lifetime of suffering and death. Add the doctor's apathy towards our plight, and that makes it ten times worse. The one thing I realized about this epidemic is that it is not insolated to one (endemic) region of the world, it's everywhere.

Best wishes.
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replied March 19th, 2015
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TD,

I saw the posts of the 'old' Scared. I wonder where he is now and how he's doing - as well as the other guys who initially posted in here.

I have a question for you: I'm trying to find a research center where they test for retroviruses and try to isolate them. My belief is that somebody would be able to find some gag/env/tax protein in my blood with adequate testing. Thus, I'd get able to start ARV's. Are you aware of any Centres like that? (possibly, in Europe) Alternatively, which kind of Health Department should I refer to ?
Also, what are your personal plans to improve your health and better manage your condition? Are you going on TAF in a few months?

Thanks a lot,
J
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replied March 19th, 2015
Extremely eHealthy
J,

I have his phone number, but he stopped returning my phone messages.

The International Retrovirology Association comes to mind, they are based in Europe and not in denial about HTLV.

TAF is due to be approved Nov 5th, which is the 4th anniversary of my demise.

Best wishes.
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replied March 19th, 2015
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Tony I do have the peperine in these pills I can feel a small burning sensation in my sides from these pills hope that's a good thing I pulled out my complete blood count lab report an rechecked my platelet COUNT ITS 254 according to my sheet from lab it must be between 150-450 my lymphocytes were all that was out of place they were44.6 an should be 17 - 38 so im high there an tony is those not the cells that the body sends out to attach it self an cause cancer?, otherwise all is good there at 14 months, my muscle twitching is gone due to turmeric/curcumin thanks to you guys im better there an my sleeping which has been bad from start of this nitemare is getting better as well with thes pills,as I no longer have to take anything to fall asleep, heard some noise in the room got up my dog has now tipped over having seizure, is he infected? you know how they are always licking you or biting at something,he is having blood work done an full work ups at vet, whats going on here? can dogs get this virus ? this is turning into a real dam mess, now I have to keep me an him from everything!! an these doctors here have no clue nor take the time to even care, I tried to see these infectious disease doctors here but when they see all my tests an labs refuse to see me because im not pos,for anything, I told them then its something else you need to figure this out, that's where the jump ship. jammy you are so lucky to have doctors who care enough to put the time into you here if its not something simple goodbye is what you get,
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replied March 20th, 2015
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Hi pal,

I don't think your dog can catch a human virus, except for the flu and a few others I think. I'm sorry for what he's going thru. Hopefully he will be doing fine soon.

I know what you mean about Doctors. The majority of them just doesn't care. I found a good GP, but she's only a 'simple' GP. I'm finding it hard to get in touch with caring specialists - which is a big issue.
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replied March 20th, 2015
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Hi pal,

I'm sorry for what is happening to your dog. Is he doing better now?
I don't think it's possible for him to get infected with human viruses - except for the flu and few others - , particularly retroviruses.

I hope you get better soon. You're right, I found a good GP. Unfortunately, specialists are much less caring and interested in my case.

I'll pray for the all of us. Something good needs to happen.
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replied March 19th, 2015
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ASSOCIATION BETWEEN PRION DISEASE AND RETROVIRUSES… Sad

Prions and retroviruses: an endosomal rendezvous?

Aarthi Ashok1 and Ramanujan S Hegde1,a
Author information Article notes Copyright and License information
This article has been cited by other articles in PMC.
The past two decades have seen the emergence of endocytic pathways as highly regulated systems for the sorting, selective degradation and recycling of nearly all cell-surface membrane proteins. At the centre of these pathways are complex endosomal structures known as multivesicular bodies (MVBs) that house intraluminal vesicles (ILVs) formed by invagination and budding from the limiting membrane (Fig 1A). The ILVs contain membrane proteins from the Golgi complex and cell surface that are destined typically for degradation after the fusion of MVBs with lysosomes. This constitutive fate of ILVs is universal to eukaryotes and represents one of the main pathways for membrane protein degradation (Katzmann et al, 2002).

Complex multicellular organisms have elaborated on this basic MVB pathway, evolving additional regulatory mechanisms to retrieve and re-route MVB components to non-degradative fates (Fig 1B). Interest in the regulation of MVBs has exploded in recent years with the realization that many viruses, including human immunodeficiency virus 1 (HIV-1), exploit these transport pathways for their assembly and release from cells (Morita & Sundquist, 2004). This area of protein transport could attract another field of researchers—the prion protein aficionados. Intriguing new studies indicate a potentially key role for MVB pathways in prion transmission and metabolism, reinforcing the central importance of protein transport pathways as the molecular basis of various diseases.

Prion diseases are transmissible neurodegenerative disorders (Aguzzi & Polymenidou, 2004) in which the central player is the widely expressed, glycosylphosphatidylinositol (GPI)-linked cellular prion protein (PrPC). The terminal stages of these diseases are characterized by the accumulation in the central nervous system of an abnormally folded and aggregated form of PrPC known as PrPSc. Exogenously acquired PrPSc mediates the conversion of host-encoded PrPC to PrPSc, leading to both PrPSc accumulation and the generation of more infectious units. Clearly, the mechanism of PrPC to PrPSc conversion and the pathways of PrPSc spread within and between cells and organisms are of utmost importance to understanding prion disease transmission. However, surprisingly little is understood about how PrPSc is released from or transferred among cells.

Fevrier et al (2004) demonstrated that PrPSc-infected cells in culture discharge both PrPC and PrPSc into the extracellular medium in association with exosomes, the name given to ILVs released after the fusion of MVBs with the plasma membrane (Fig 1A). PrPSc-containing exosomes were enriched in prion infectivity, raising the provocative, albeit speculative, idea that exosomes are important carriers of PrPSc between cells and tissues of an infected organism. Implicit in this hypothesis is the prediction that manipulation of the pathways leading to exosome generation should markedly influence both PrPSc release and its infectious spread. As some of the most active research in MVB transport is being carried out by virologists, studies in this field might offer insight into the cellular release of PrPSc.

Retroviruses including murine leukaemia virus (MuLV) and HIV-1 have been found to bud into endosomal membranes by hijacking the same machinery used for the generation of ILVs (Morita & Sundquist, 2004). On delivery of MVBs to the plasma membrane, viral particles, similar to ILVs, are released from the cell. The obvious advantages of this mode of viral assembly are the minimal exposure of viral proteins to extracellular immune surveillance during budding and the opportunity to acquire host endocytic proteins that might contribute to immune evasion by viral particles. It has been suggested that these viruses have even evolved mechanisms to avoid degradation by inhibiting the transport of MVBs to lysosomes while temporally and spatially regulating their release at the plasma membrane (Fig 1B). Thus, retroviruses seem to subvert the endocytic transport pathways markedly to stimulate MVB formation and release at the cell surface. Could this influence the cellular release of PrPC and/or PrPSc?

The recent findings of Leblanc et al (2006), published in the 21 June issue of The EMBO Journal, suggest that the pathways of viral release and PrP release might indeed intersect at the MVB. These authors used a combination of immunoelectron microscopy, immunoisolation and co-fractionation methods to show that both MuLV and HIV-1 infection of cultured cells markedly stimulates the release of PrPC. MuLV infection also stimulates PrPSc release, and this was inhibited by budding-incompetent MuLV. The released PrPCand PrPSc were found largely in association with viral particles and cellular exosomes. By using a transwell co-culture assay, the authors could further show that virus-stimulated release of PrPSc led to increased infection of target cells. These results indicate that retrovirus infection stimulates the release and spread of PrPSc, potentially by modulating MVB transport pathways.

The authors speculate that retroviruses, perhaps endemic in certain flocks of sheep, might act as (presumably non-obligatory) co-factors in the infectious spread of prions. Validation of this provocative suggestion must await future studies. Nonetheless, the combined work of Fevrier, Leblanc and colleagues provides the field of prion transmission with a new cell biological focus: the highly regulated endocytic pathways of intracellular transport. The rapidly emerging intricacies of MVB formation, transport and exosome release might help to reconcile otherwise disparate observations on prion infectivity. In the discussion below, we consider a few of the more intriguing recent findings to exemplify how the framework of endocytic transport might point towards testable hypotheses for future study.

An apparent requirement of cell-to-cell contact for the efficient intercellular spread of PrPSc (Kanu et al, 2002; Liu et al, 2002) seems at odds with exosome-mediated transfer. However, the sites for exosome release are unlikely to be random and might be stimulated by extracellular cues that are still poorly understood. In the case of viral release, local fusion of MVBs at sites of close cell-to-cell apposition (virological synapses) is thought to mediate efficient infection of nearby cells (Morita & Sundquist, 2004). Thus, an analogous mechanism of stimulated, focal release of PrPSc-laden exosomes might explain why in some cell types or under certain culture conditions, close juxtaposition of cells is necessary for the spread of PrPSc (Fig 1B). We speculate that such a directed intercellular transfer of PrPSc-enriched exosomes might be pertinent early in the course of prion infection, when PrPSc is robustly replicated and spread throughout lympho-reticular tissues and lymphoid organs (Aguzzi & Polymenidou, 2004). Consistent with this idea, most examples of regulated viral and exosome release involve cells of the immune system (Morita & Sundquist, 2004), making them attractive model systems for studying the regulation of exosome dynamics and perhaps PrPSc spread.

If PrPSc is recruited into ILVs and can be stored in MVBs (or constitutively degraded through lysosomes) until stimulated to be released, an appropriate stimulus could release bursts of infectivity. Two studies have shown that inflammation, induced by either lymphofollicular mastitis in sheep (Ligios et al, 2005) or nephritis in mice (Seeger et al, 2005), can induce PrPSc release in milk and urine, respectively. It is tempting to hypothesize that inflammatory signals can stimulate exosome release and hence promote local PrPSc spread. This is a particularly appealing idea because immune cells have already been shown to regulate MVB formation and exosome release on stimulation by extracellular stimuli. Although the mechanisms involved in stimulation of exosome release and the role of inflammation in this process remain to be clarified, the predictions are both specific and testable.

Finally, the endo-lysosomal system has long been implicated not only in the normal turnover of PrPC, but also in the (albeit rather slow) degradation of PrPSc. Because both PrPC and PrPSc transport intersect in endosomes and lysosomes, it is widely thought that the conversion of PrPC to PrPSc occurs in these intracellular compartments. Examination of this idea requires a mechanistic understanding of how PrP is sorted in MVBs under normal circumstances. This step is not only presumably a decisive event in the constitutive degradation of PrP in lysosomes, but also a point of probable divergence in PrP transport during the course of disease.

An intriguing aspect of sorting in the endocytic system is that the oligomerization state of proteins has been shown to alter their transport itineraries markedly (Marsh et al, 1995; Vidal et al, 1997; Wolins et al, 1997). For example, both the oligomerization and aggregation of cell-surface molecules have been shown to cause their prolonged retention in endosomal structures through the inhibition of recycling mechanisms. It is thus plausible that PrPSc, by virtue of its oligomeric structure, could modify the cellular transport of PrPC in such a way as to evade degradation and perhaps facilitate replication in a sequestered, partly denaturing and immune-privileged environment. In such a scenario, lysosomes are ‘bioreactors' for the replication of PrPSc, an idea suggested many years ago for the scrapie agent by Laszlo and colleagues on the basis of morphologic analysis of infected brain (Laszlo et al, 1992). Clearly, testing these ideas will require not only a quantitative and mechanistic understanding of PrPC biosynthesis, transport and metabolism, but also the tools to manipulate individual steps experimentally. The illumination of MVBs as a potentially key branch point in the transport pathways of PrPC and PrPSc opens up a range of possibilities for future work on prion disease transmission and spread.
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replied March 20th, 2015
Experienced User
Jammy thanks for the kind words, I was being extremely careful with him, as I am where ever I go, I wear gloves a lot,dont cough or split, do not get close to anyone an always sanitize my counter tops, all my surfaces, an my computer,even my lite switches.all my plates, forks cups throw away,It is terrible to not not if or what is going on inside you or if you are contagious, but if you guys are I must be,an getting anywhere within 4 ft of a lady again forget it.The vet drew the blood today I want him gone over carefully, they give the dog better care, an do a far better job on him then the doctors I have.what a terrible thing to have to say our pets get better care then we do.I hope you are right that he is not contagious but til I know whats going on have to keep him from all animals an people.I did read that these retroviruses from these monkeys can infect anything with a backbone, an came from monkeys to begin with. hope im wrong jammy.
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replied March 22nd, 2015
Congratulation!
I live in Singapore, I went to take a hiv test in DrTanAndPartners.com yesterday. Waiting the result! Bless me!
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replied March 23rd, 2015
Experienced User
sgcherry, has it been 90 days since your exposure? if so you can trust those test results, the new generation of hiv tests are very sensitive an are very spot on,DONT BE LIKE ME AN NOT TRUST THE RESULTS I tested for a whole year every month, til I finally felt I was neg an did not have hiv,but I do have something,even thou all my std tests were neg,an my blood work after 14 months is normal,an I feel fine an don't look sick,If you read older posts from all the guys who have been here you will get a better understanding of what we are all going thur,most of the people here still do not know the cause of our troubles,an together we are trying to figure it out an help treat each others symptoms, you will find jammy 88 an tony d, top notch for words of wisdom, they are the best to seek advice from. follow up with us when you get your results,at 90 days,good luck im wishing you to be hiv free.I don't wish any of this on anyone. jammy my dog has good blood but we know that don't mean anything,has neurological issues out of no where? so go figure? something is very not right here.
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replied March 24th, 2015
Experienced User
@ TonyDewitt:
Do you think we might be at risk for Prions Disease? There's an association between leukemia and prions disease; and between retroviruses and prions disease.
This idea terrifies me.
I recently read an article concerning a woman who had gotten a viral encephalitis of unknown etiology and 20 yrs later died from prions disease.
This will eventually be us in 2040, I guess.
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replied March 24th, 2015
Extremely eHealthy
J,

I think we have a retrovirus, it's going to do major damage to our entire bodies if we don't stop it. Yes, prions are deadly and terrifying, but we aren't at a risk factor for prion infection, whereas we are at risk for a retroviral infection.

Best wishes.
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replied March 26th, 2015
Experienced User
TD,

I totally agree with your retrovirus theory.

I was just asking about prions because they're apparently caused by retroviruses. The woman I read about caught a viral encephalitis in South Africa and died from prions disease 20 yrs later. Also, several ME/CFS sufferers are found to be carriers of prions in their brain. If HIV and MLV can cause prions disease, I believe also HTLV might do the same.
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replied March 26th, 2015
Extremely eHealthy
MS was long thought to be a genetic disorder, until a MS patient contracted HIV, thus requiring anti-HIV medications. The result of taking anti-HIV medications was that the patient's MS syptoms (severe paralysis) completely resolved. So don't let anyone tell you that endogenous retroviruses aren't real.

Best wishes.
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replied March 26th, 2015
Experienced User
You have a lot of knowledge, and many Doctors should learn from you. The World would be a better place.

I've personally been saying for months that people with Lupus, Sjogren's and other Rheum. disease are likely to have retroviruses. Out of 10 'top' Italian Specialist Doctors, the only person who clearly talked to me openly about this argument was my GP. I guess something's wrong with the way ordinary Medicine treats diseases. Immune suppressors can be very dangerous in similar cases… suppressing an already compromised immune system is not a great idea.

We gotta keep being optimistic. Thanks for your constant and precious contribution, TD.

Best
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replied March 24th, 2015
I had anal sex
Hi,
15days back i had anal sex while entering my penis condom got broken, i asked that gay partner he said he is negative , after 15days of exposure i have tested ag/ab combo it was negative but am still worried its like killing me plz let me know how safe i am.
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replied March 26th, 2015
Experienced User
Good luck on your test.
Unfortunately, there is no Doctor in this thread. Also, we're dealing with something different than HIV, so we can't help you further. Hope you'll be negative. Best
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replied March 27th, 2015
Hi to everyone and thanks jammy88 and therider14 for your kind words on my las coment.
I got the results of my las hiv test(4th gen abbott architect) passed more than 8 months of my risk and happily still negative, but unfortunately i still have symptoms like joint/muscle aches, dry skin, dry/peeled lips, floaters in eyes, red pimples in arms, peeled fingertips, and recently got like a patch of scaly/dried skin in forearm... I don't know where to start in trying to diagnose what i have, maybe get tested for other deseases or go to dermatologist.
I don't know... Also im gonna find out where i can get tested for htlv in my city.
It has been like one year since i don't train and really need it but i'm afraid that with the intensity of it my sipmptoms could get worse, i have practicing muay thai, boxing and MMA for around 4 years and i used to train like 6 days a week, 2 or 3 hour per day, it was a big part of my life but as many of you, after this nightmare started our life has changed in many ways, i want to move on but im still so scared and tired of all of this, i don't even had sex since all of this started, the other day i met a really nice girl at a bar and we ended up making out and she asked me to go to her place but i gave an stupid excuse and walked away, i'm so scared of passing whatever i have to another person that i cannot start a relationship, of course i will never have sex without comdon but still so worried of passing it to another one, it is frustrating, i feel my life is in sort of paralysis state.
I will try to start again with all my activities, eat heathier, and try to not worry that much, i want to believe that all is in my mind and im kind of hypocondriac as many people had suggested me or to anxious, stressed and depressed that my symptomes comes from that...
I guess all of you guy had thought that also but symptoms speak for themselves.
I will really apreciate your advices regarding which tests i can practice, where to go from here or what to do next in order to find out whats happening.
I have been reading the posts(not all yet) and it has been helpfull but quite overwhelming too to be honest hehe.
Thanks guys, i hope all of you are doing well and find out whats going on.
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replied March 28th, 2015
Experienced User
Hi Paparanoid,

thanks for the kind words.

If I were you, I'd start testing for CFS-causing viruses, such as EBV, CMV, HHV-6/8, HTLV 1-2, Parvovirus etc…

If everything turns to be negative, you'll need to look somewhere else. Neutral

You should try to find a sympathetic Infectious Diseases Doctor, or a Rheumatologist. If you have neurological symptoms, you could also ask a Neurologist to prescribe some virology tests for you.

I wouldn't exclude Lyme and other bacterial infections. Unfortunately, those symptoms can be due to several pathogens.
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replied March 28th, 2015
Experienced User
paparanoid; keep reading all the posts tonyd an jammy who really out does himself him some good info here, read jammys post from august he lists a lot of uncommon stds most people have never heard of, you may want to investigate them as I have,do test for what jammy tells you,keep in mind as tony d had posted a lot of symptoms can be caused by something else an not the underlying disease itself,if you tested out to 8 months for hiv an are neg you do not have hiv, if you have not tested for HEP A,B C I would do that an all the common stds as well, DO NOT LET WHAT EVER YOU HAVE KEEP YOU from living your life,you are still in the game player, get out there,crying an whining will not change a thing, its sure as hell not going to keep me off my Harley ill tell you that, not going to keep me off the water,this summer my boat will roll out as it always does,no one knows what the next day brings enjoy! that go. for you too jammy, now that that's over, do you have symptoms of white tongue? any swollen lymph nodes in neck, under arms, groin area, stiff neck ? if not that is a good sign, as these rep an infection. let us know your progress, don't get bent out of shape you don't even know what you have yet, an until you do I don't think I would kiss or go near any ladies, who knows you may end up with more troubles. everyone here has tested a lot with no results, we all have similar symptoms, its very hard too say what you may have at this point you have too do more testing,but as for me im thinking some sort of retrovirus, good luck rider
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replied March 30th, 2015
Experienced User
My current and ongoing symptoms:

- Black moles coming up everywhere on my skin
- Itchy skin sometimes at night
- Fatigue
- Numbness


Got told to go to a hematologist, but:
1- I'm scared of hearing the words "you have a monoclonal gammopathy" (especially cuz there's no treatment for it; just a 'wait and see' approach)
2- I feel hopeless
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replied March 30th, 2015
Experienced User
jammy where is your numbness in your feet an arms?does your numbness prevent you from doing anything? are those all your current symptoms? mine are white tongue since beginning, mild stiff neck, digestive issues,my dry skin is much better now,but skin texture not the same ,had some itchy eyes but it comes an goes,swollen glands under arms.which comes an goes.do not feel sick nor tired, but im sure not guy I was 14 months ago.I also know whatever I have there is no treatment plan for, getting boat out Friday me an sons going fishing, I keep pushing,an pushing on hard doing what I love I encourage all to do the same,I know you wont give up jammy,all I can say is enjoy!!!! an keep pushing
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